THE FUTURE OF PEOPLE WITH DISABILITY

IN THE WORLD

HUMAN DEVELOPMENT AND DISABILITY

REPORT TO THE CLUB OF ROME

by RAFAEL DE LORENZO GARCÍA

Ankara, October of 2002

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PROLOGUES

A Timely Report

H.R.H. Prince El Hassan Bin Talal, President of the Club of Rome

When in 1968 Aurelio Peccei founded the Club of Rome, he wanted to create an
organisation that would serve as a forum to animate debate about the
opportunities and challenges facing Humankind at the many crossroads of the
future. Of the challenges ahead, those that awoke perhaps the most interest spoke
about preserving the dignity of each person, and making the changes, in both law
and private and collective conduct that would help us build a more just world
inspired by a sense of solidarity. The new world would be a place where our human
and cultural diversity would be prized, while the inhabitants of the planet would
strengthen ties through solidarity with each other and with future generations.

For this reason, when the Club of Rome commissioned Rafael de Lorenzo to draw
up the report on the future of people with disability throughout the world that is
published here, its motivation was to elucidate new perspectives for disability in
the world today, and to identify the steps of the journey that people with disability
must travel towards effective integration into the life of the community. This
journey will require specific measures to combat discrimination, reinforced with
positive action to promote the inclusion that we are all working towards. While this
itinerary will reward people with disability in their to claim to their unalienable
equal rights, it will also give us a model that can be used to defend the value of
human diversity, and that can be wielded to fight against exclusion on the grounds
of any type of personal difference.

Hence, the Report that Rafael de Lorenzo presented to the Annual Conference of
the Club of Rome in Ankara in the fall of 2002, and that was approved after the
incorporation of the suggestions arising from its analysis and debate, provides a
text that speaks not only of the emancipation of people with disability, but of the
emancipation of each and every one of us. The Report is not only a vindication of
the rights of the disabled, it is a manifesto to endow all human beings with the
wherewithal to give the best of themselves to our common cultural, social and
economic heritage. As the author reminds us in his final considerations, we cannot
afford to squander the resources that each of us nurtures inside.

It was, therefore, a source of satisfaction for the Club of Rome to receive the early
edition of this Report printed in Spanish thanks to the generous and on-going
support of the ONCE – the National Organization of the Blind of Spain – and its
Foundation. This first version immediately conveyed the unequivocal message that
we must all strive to build a collective heritage that will only be strengthened
every time we treat each other as fellow human beings. Our collective heritage
grows every time we work to ensure that nobody’s personal circumstances will
ever constitute an insurmountable barrier to inclusion and to the solidarity we owe
each other. It is also a source of satisfaction to know that behind the Report is all
the enthusiasm of the exemplary institution that is the ONCE and its Foundation,
and the dynamism of the Spanish Chapter of the Club of Rome that have backed

2
the author every step of the way in this endeavour, that has fully met each and
every one of the difficult expectations it entailed.

Thanks are, therefore, due from the Club of Rome to the author and all of the
people who assisted him along this intellectual journey that will help us continue to
think globally while acting locally to promote the wellbeing of each and every one
of our fellow human beings and of those who will succeed us in the future.

The Report of the Club of Rome --- the ONCE and the ONCE Foundation in
their fight for the integration, equality and dignity of people with
disabilities

Miguel Carballeda Piñeiro, President of the ONCE

Carlos Rubén Fernández Guitiérrez, Vice President of the ONCE and

President of the ONCE Foundation

The National Organisation of the Blind of Spain is celebrating its 65th anniversary
and the 65 years it has worked for the social emancipation of the blind and the
severely visually impaired in Spain. It was fifteen years ago that the ONCE
created its Foundation as its vehicle for cooperating with people with other, non-
visual disabilities to work for their social integration as well.

All of these years of experience in working for integration and equality have taught
us that convincing society of the full dignity of people with any type of disability is
a truly arduous task that sometimes seems to be so complex that it is almost
impossible to fulfil. However, when people with disability accept the crude reality
of their lives and, always aware of their limitations, decide to fight to overcome
them, their willpower to succeed almost always vanquishes the difficulties they
face. When the families of people with disabilities and associations in the Disability
Movement decide to take action together and in a proactive way, people with
disability make their voices heard loud and clear, and they succeed in carving out
a niche for themselves in society. When social policies make the necessary
resources and the right conditions available they help attenuate the disadvantages
linked to disability, and make a real contribution to promoting integration. When
society and each and every one of us shoulder our responsibility from an ethical
and human standpoint, forming common cause with our fellow human beings,
society is transformed. It begins to recognise and respect each of its members, no
matter what their personal characteristics may be. It is then that we can see
ourselves reflected in each other, and truly do for others as we would have them
do for us. When all of this becomes reality, the sense of utopia will melt away to
become a real, palpable society where each of us has a place.

The ONCE and its Foundation are highly satisfied with the report on the The
Future of People with Disability in the World because of the wealth of
analyses it offers from many different perspectives, very much in line with our own
philosophy, culture and practical reality. We would like to express our thanks to
the Club of Rome for deciding to take on board the problems facing people with

3
disability. Special thanks must go to Ricardo Díez Hochleitner, the then president
of the Club and Isidro Fainé Casas, the President of the Spanish chapter for their
tremendous support since the beginning of this project until its completion. Our
thanks are all the more heartfelt for their having entrusted the task to a man like
Rafael de Lorenzo, who has worked untiringly on the ONCE’s project in its fight for
the social integration and equality of people with visual or any other disability,
from the different positions of responsibility he has held within the Institution. We
are proud to have been able to contribute to the successful completion of the
Report. We are all the more pleased that this work could be done under the
leadership of a member of the ONCE, as it will constitute a relevant Spanish
contribution to the worldwide debate on the subject of Disability. Also crucial to the
success of the project has been the work of the excellent Technical Committee,
headed by José Manuel Morán, with a team of professionals who are often close
collaborators of ours. This Report is firmly rooted in the vision of the ONCE, its
members and the vast majority of people with disability.

Thanks to the efforts of all of its members, the ONCE is making strides in
improving the quality of life of people with disability, helping them move towards
the social integration that materialises the principle of human dignity. As an
independent organisation, the ONCE provides a wide range of programmes and
services specifically designed to meet the needs of its members. It strives to
demonstrate that a well organised Civil Society can meet these needs with great
efficiency, but with a big dose of human understanding as well, acting with great
professionalism, but from the heart. This is achieved by articulating mechanisms
for cooperation with social movements and Public Authorities to continue
advancing along a path still plagued with uncertainties and pitfalls, but also full of
opportunities and hope. Along these lines, and among other objectives, the ONCE
Foundation has succeeded in creating some 50,000 jobs for people with different
types of disabilities over the last 15 years. This has required a change in mindset
and an evolution from the era of the passive policies that bred resignation,
dependence and social exclusion to the era of self-determination, independence
and the social inclusion of people with disability and the organisations that
represent them. Finally, through our extensive experience, with our successes and
disappointments, the ONCE and its Foundation make common cause with the
struggle of people with disability everywhere and stand four square behind the
ambitions and objectives expressed in the Report, with the commitment to
continue working, together with many others to reach the ideal we all cherish of a
life with dignity for people with disability. We would like to convey a positive
message of hope that it is possible to advance towards our goals in a real and
effective way, as our own experience has borne out. The results of our efforts are
palpable, although we cannot rest for a moment because, as one of our more
emblematic slogans says, “We still have a long way to go”. We are firmly
committed to keep working in close cooperation with the social movement and
public and private institutions in our own country and in the international arena to
continue to advance towards our objectives.

Madrid, November 2003.

4
The Report on “The Future of People with Disability in the World” and
the Spanish Chapter of the Club of Rome

Isidro Fainé Casas, President of the Spanish Chapter of the Club of

Rome

When at the end of the last decade, the ONCE Foundation intensified its
collaboration with the Club of Rome and its Spanish Chapter, it was easy to
foresee that this collaboration would lead the Club to expand its interest in the
issues affecting people with disability. It was clear that before long, it would
begin to study them more explicitly along with others more traditionally in line
with its work. This was not an entirely new tack, of course, as since its
inception the Club has always been concerned with issues regarding human
dignity. However, by focusing more directly of this subject, it wanted to
contribute to helping to relieve the crude reality that people with disability
must face, marked by social exclusion and exclusion from all spheres of
collective life. This Chapter was aware of the threat that this involves to human
dignity and the impediment to the development not only of the people who are
victims of discrimination, but of all of society that, through the exclusion of
some of its members, forgoes the valuable contributions they could make.

To the expectations of harvesting a wealth of knowledge on this new subject,

we must add the enthusiasm for this new initiative of the Club’s then
President, our colleague and the Honorary President of our Chapter, Ricardo
Díez Hochleitner. His sensitivity and enthusiasm for all projects that contribute
to accelerating human development, without discrimination or exclusion, was a
guarantee that soon this collaboration would start to bear fruit. That is why,
when I had the pleasure of hearing, at the Club of Rome’s Annual Conference
in Vienna, four years ago, how the Club commissioned Rafael de Lorenzo to
prepare the Report that is being published now, those expectations were
coupled with a firm commitment, both personal and on behalf of the Spanish
Chapter to give all the support we could to the endeavour. The Chapter, thus,
provided enthusiastic support, and as advances were made available,
communicated them promptly among its members.

Hence, the Chapter felt sure that these early debates and publications on the
integration of people with disability in today’s society would contribute to the
work it was already carrying out on such issues as immigration, sustainable
development, solutions to unemployment or problems in these times of
economic uncertainty and scientific development. It became clear that the
concerns of people with disability when they contemplate the future differ very
little from those of everyone else. It also became clear that anyone at some
point in life may become the object of exclusion on the grounds of one
difference or another. We became convinced that we could not look forward to
a future without fear until we overthrow forever the double standard that
condemns some people to social exclusion.

Since the very beginning of this endeavour, then, with Ricardo’s sensitivity,

5
heightened by his fond family memories, together with Rafael’s personal
commitment and expertise and the Club of Rome’s ongoing concern for the
quality of human life, there was no doubt that very soon, we would have
before us a Report that combined innovation, rigour, commitment and
proposals for the future. The Report would be able to take advantage of the
valuable experience of the Disability Movement in Spain and the fight of its
members for effective and full integration, thanks to the active, intelligent and
innovative leadership of organisations like the ONCE Foundation.

The aim of the Report was to reflect the full gamut of experiences of the
disabled, since the fight for inclusion is not limited to the labour market and
educational opportunities, but permeates every aspect of life. It advocates
exploring every opportunity as our cultures change their mindsets, and these
changes are reflected in our countries’ legislations, and as our societies
become aware that the problems that affect people with disability are problems
that affect us all.

This Report, whose publication is made possible through the organisational and
financial support of the ONCE and its Foundation since the very beginning, is
articulated around the idea of promoting the social inclusion of people with
disability through a combination of anti-discrimination measures and
affirmative action. The scope of these efforts, however, goes well beyond the
collective of people with disability, to benefit all members of society. The
Report that is presented here reaches much further than was originally
anticipated. These pages convey not only the personal commitment of the
author, but his professional insight and his vision of the future when he
stresses that we cannot renounce the ethical aspects of the inclusion of all
members of society and the value of human diversity. In this diversity, where
every human being can be who he or she really is, without fear of rejection by
others, as the Report concludes, there can be no progress in the pursuit of
human quality unless the inalienable rights of each and every person are
upheld.

When this happens, at last the centuries' long struggle for true equality
between all human beings, no matter what their capacities and unique features
may be, will be over. The chapters of this Report are, therefore, not only a call
to stop discrimination against people with disabilities, but also a manifesto that
speaks of the contribution that each of us can make, from our very diversity
and differences, when we give of ourselves for the benefit of our cultural,
social and economic heritage. As Rafael de Lorenzo states in his closing
remarks, we cannot afford to squander the resources that we are all capable of
contributing.

Finally, all of these ideas dovetail with those of our Chapter of the Club of
Rome, a Chapter that has always been aware that at this human crossroads, it
is our responsibility to endeavour to make reality the human revolution that
Aurelio Peccie talked about in one of the Club’s first Reports, “Testimony of the
Future”. If today’s men and women are to fulfil their potential, people must be

6
transformed, so they can respond to the requirements of the twenty-first
century, and initiate from within themselves the spiritual renaissance that we
all long for.

With this new awakening will come new values and sources of motivation that
will lead to spiritual rebalance and solidarity with our fellow man. This will allow
us to re-establish what Peccei described as supreme goods and necessities,
that is, love, friendship, understanding, solidarity, a spirit of sacrifice and
hospitality. The closer these goods and necessities bind us to our brothers and
sisters from the four corners of the earth, the greater our collective gain.

As this Report sets out in its conclusions, beyond references and proposals to
forge a more humane future for people with disability, we must commit
ourselves to promoting on-going affirmative actions to support human
diversity, and to recognize it and defend it as part of our common heritage.
This will allow us to acquire a new wealth to treasure in our hearts, expressed
in the will to see ourselves reflected in our fellow men and women, and to treat
each other as we all deserve, with human dignity, independently of each one's
position in life.

7
 THE FUTURE OF PEOPLE WITH DISABILITY IN THE WORLD

HUMAN DEVELOPMENT AND DISABILITY

REPORT TO THE CLUB OF ROME

TABLE OF CONTENTS

Chapter One INTRODUCTORY ASPECTS..................................................... 13

1. PRESENTATION.............................................................................. 13
1.1. Background....................................................................... 13
1.2. Methodology...................................................................... 15
2. THE REASONS FOR THIS REPORT..................................................... 16
3. THE PRINCIPLES BEHIND THE REPORT.............................................. 17
4. THE PREMISES OF THE REPORT........................................................ 27
5. THE CONTENT OF THE REPORT......................................................... 19

Chapter Two DISABILITY AND THE NEW DILEMMAS FOR HUMANITY 20

1. EXPECTATIONS AND UNCERTAINTIES FOR THE NEW TIMES................. 20

2. EXPECTATIONS OF PEOPLE WITH DISABILITY.................................... 27
2.1. The realities of disability: A portrait in grey............................ 27
2.2. The roads towards a modern society..................................... 29
2.3. Society and the perception of disability..................................34
2.4. Human Development and disability....................................... 37
2.5. Equality and participation in an inclusive society..................... 42
3. THE REALITY OF DISABILITY AT THE BEGINNING OF THE
21st CENTURY............................................................. ..................43
3.1. The concept of disability...................................................... 43
3.2. Statistical realities at the beginning of the 21st Century..........44
3.3. Legal Realities.................................................................... 50
3.4. National Policies and people with disability............................. 55
3.5. Social changes and disability................................................ 57

Chapter Three THE OPPORTUNITIES THAT EXIST

AND THAT CAN BE CREATED......................................................................60

1. DISABILITY IN THE PERSPECTIVE OF HUMAN RIGHTS......................... 60

1.1. The rights of minority groups............................................... 60
1.2. Non-discrimination and positive action, the keys to guarantee
the rights of people with disability........................................ 61
2. EDUCATION AND LIFE-LONG LEARNING FOR ALL................................ 63
2.1. Integrated education.......................................................... 64
2.2. Education. What are our aims?............................................. 68
2.3. Training in the Information Society....................................... 70
3. OPPORTUNITIES AND EXAMPLES OF INCORPORATION INTO
THE LABOUR MARKETS.................................................................... 72
3.1. Changes in opportunities for employment.............................. 74
3.2. The option of sheltered employment..................................... 75

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 3.3. The transition to mainstream employment: innovative formulae
for the inclusion of people with disability in the mainstream
labour market.................................................................... 76
3.4. Quota systems................................................................... 77
3.5. Economic support for companies and workers........................ 78
3.6. Self-employment................................................................ 79
3.7. Supported employment....................................................... 80
3.8. The role of the different social agents.................................... 80
3.9. Social responsibility and company ethics............................... 81
3.10. The new dimension of non-discrimination in employment......... 84
3.11. Challenges and opportunities in employment.......................... 84
3.12. Tapping new opportunities................................................... 87
4. SOCIAL PROTECTION AND SOCIAL SERVICES.....................................87
4.1. Social Security as an instrument of social cohesion................. 89
4.2. Social services, fundamental for the welfare of individuals and
society.............................................................................. 90
5. EXPECTATIONS FOR TECHNOLOGICAL CHANGE AND SCIENTIFIC AND
MEDICAL ADVANCES...................................................................... 91
5.1. Innovation, design for all and user participation......................91
5.2. Medical advances and disability............................................ 99
5.3. Medicine, society and disability........................................... 101
5.4. Genetics and the discovery of the “Book of Life”....................104
5.5. Bio-ethics as a protection against dehumanisation.................106
5.6. Desirable objectives.......................................................... 107
6. PEOPLE WITH DISABILITY ALSO HAVE THE RIGHT TO ENJOY LEISURE
AND CULTURAL ACTIVITIES........................................................... 110
6.1. A society for all citizens..................................................... 110
6.2. Leisure and culture as determining factors of quality of life.....110
7. THE LIFE OF THE CITIZEN AND ACTIVE PARTICIPATION IN POLITICAL
DEVELOPMENT............................................................................. 116
7.1. The life of the citizen......................................................... 116
7.2. The Disability Movement and associations representing people
with disability................................................................... 118
7.3. The ways groups are articulated......................................... 119
7.4. Political action in the Disability Movement............................ 120
7.5. The content of representative political action........................ 122
7.6. Parallel actions................................................................. 126
7.7. Financing representative political action............................... 126
7.8. Social responsibility.......................................................... 127
Chapter Four QUALITY OF LIFE BASED ON SOLIDARITY…………………..129

1. THE NEED TO RECREATE VALUES IN A CIVILISATION AT A

CROSSROADS............................................................................. 129
1.1. A solid social environment................................................. 132
1.2. A transforming humanism that fosters the development of
Humankind...................................................................... 133
1.3. The value of diversity........................................................ 134
2. THE ADVANTAGES OF SOCIAL COOPERATION................................... 135
2.1. Citizens with a social conscience......................................... 138
2.2. Moral and economic competitiveness of solidarity..................138
2.3. The Disability Movement and cooperation in a spirit of
solidarity........................................................................ 140

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3. COMPETITIVENESS AND SOCIAL COHESION: OPPORTUNITIES FOR
INTEGRATION AND INCLUSION THROUGH SOLIDARITY..................... 142
3.1. Globalisation that benefits all citizens.................................. 142
3.2. The non-profit sector and the Social Economy: Initiatives for
inclusion.......................................................................... 145
3.3. Opportunities for cohesion in the Interactive Society............. 147
Chapter Five ROADS TO THE FUTURE…………………………………………….150

1. THE DEVELOPMENT OF THE NEW MAN AND HIS RELATIONSHIP WITH

FUTURE GENERATIONS: THE VALUE OF THE ETHICAL REFERENCE OF
INCLUSION................................................................................. 150
1.1. Inclusion as a defence for personal dignity........................... 150
1.2. Promoting solidarity as a way of building a civilised society..........
.................................................................................. 151
1.3. Ethics in favour of human diversity: From civilisation
to decency....................................................................... 153
2. PROPOSALS FOR DEBATE AND ACTION ON DISABILITY AND HUMAN
DEVELOPMENT............................................................................. 154
2.1. New strategies for confronting old problems......................... 154
2.2. The general framework for action with regards to people with
disability: evidence, principles and criteria........................... 157
2.3. Some proposals for positive action...................................... 172
3. RECOGNISING HUMAN DIVERSITY IS THE KEY TO A MORE
HUMANE FUTURE......................................................................... 180
Annexes REFERENCES AND SOURCES..................................................... 183

BOOKS, ESSAYS, ARTICLES AND REPORTS.............................................183

OFFICIAL DOCUMENTS........................................................................ 188
SOME WEB REFERENCES FOR INFORMATION ON DISABILITY....................190

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ACKNOWLEDGEMENTS

The Director of this Report would like to recognise and sincerely thank the people
and institutions without whose trust and collaboration it would have been
impossible to begin and conclude this work.

I would like to begin by expressing our personal thanks to the Club of Rome, its
Executive Committee and, most especially, Ricardo Díez Hochleitner, for the trust
they placed in the Director of this Report and for the special sensitivity shown
considering the fact that he is, himself, a person with disability. Likewise, we
would like to express our sincerest thanks to the Fundación ONCE de España, to
José María Arroyo Zarzosa and Miguel Carballeda, the outgoing and incoming
Presidents of the ONCE and the Fundación ONCE, and to Carlos Rubén Fernández
Gutiérrez, the President of the Fundación ONCE, for their institutional and material
support, which were of great assistance to the Director of this Report and his team
of collaborators. We would also like to thank the Spanish Chapter of the Club of
Rome, and especially its Chairman, Isidro Fainé, for their constant support.

The list of personal thanks would be endless, as we have had many, extremely
valuable contributions in drawing up of this report. Therefore, to make sure that I
include everyone, I would like to express my thanks to all those who have
contributed either directly or indirectly to the Report, with specific mention of my
closest collaborators on the various levels involved.

In the first place, my most sincere thanks to the experts designated by the Club
for their contributions to the Report, specifically Ricardo Díez Hochleitner, Ruth
Bamela Engo-Tjega, Alicia Bárcena, Ashok Khosla, Patrick M. Liedtke and Keith D.
Suter.

In second place, my deepest acknowledgement to the group of international

experts who, from the outset, contributed with their expertise, giving us such
different perspectives from different personal, cultural and regional attitudes. This
group was formed by Nicola Bedlington, a specialist consultant in disability from
Nyon (Switzerland); Jerome E. Bickenbach from the Queen’s University in Ontario
(Canada); Miguel Ángel Cabra de Luna, Director of International Relations of the
Fundación ONCE (Spain); María Soledad Cisternas Reyes from the Universidad
Diego Portales in Santiago (Chile); Michael Fox, of Access Australia; Thakur V. Hari
Prasad from the Rehabilitation Council of India; Luis Leardy of the Fundación ONCE
(Spain); Joshua Teke Malinga of the Pan-African Federation for the People with
Disability (Zimbabwe); Ryosuke Matsui, of the International Rehabilitation
Committee for Asia and the Pacific (Japan); Constantino Méndez Martínez, General
Manager of the company Fundosa Social Consulting (Spain); Barbara Murray and
Susan Parker, from the International Labour Organisation; Gerard Quinn from the
National University of Ireland; Antonio Remartínez, of Bioingeniería Aragonesa
(Spain); Stefan Trömmel, of the European Disability Forum; Lisa Waddington of
the University of Maastricht, in Holland and Sid Wolinsky, specialist in disability of
the World Health Organisation and member of the group of Defenders of the Rights
of People with Disability in California (USA).

It is, likewise, necessary for me to mention here, and to acknowledge the splendid
work carried out by the Technical Committee created by the Director of this

11
Report. The dedication, commitment, professional approach and efficiency of this
Technical Committee was such that each one of its members deserves to be
considered a co-author of this report, although the Director of the Report accepts
full responsibility for the results of this effort. At the head of this Committee, the
technical coordinators made a notable contribution, José Manual Morán Criado,
Vice-chairman of the Spanish Chapter of the Club of Rome and Antonio Jiménez
Lara, specialist consultant on disability and also a member of the Spanish Chapter
of the Club, were always available to help the Director of the Report; the Secretary
of Communications, Clara Eugenia Calvo Arrojo, a lawyer, who, together with her
general tasks in the Committee, was responsible for coordinating the work of the
international experts. Our most sincere thanks to the three of them and very
especially to José Manual Morán for having been capable of transmitting to the rest
of the team the necessary enthusiasm to lead this project to a successful outcome
and for having been a true means of salvation at time when the project seemed
about to flounder.

The list of the members of the Technical Committee, all of whom were Spanish, is
not very long but it was a group of people characterised by their excellent
professionalism. Not only did they made this report possible, they all contributed
to an unforgettable personal experience through the numerous meetings which
were held, the contrast of viewpoints and the integration of the different
contributions, all of which led to an invaluable and enriching experience. The men
and women in this team, besides the aforementioned technical coordinators and
secretary of communications, were José María Alías Martín, Chief of Documentation
of the press agency Servimedia; Mercedes García-Camino Burgos, Director of
Innovation of the Asociación Telefónica de Asistencia a Minusválidos and
collaborator of the Fundación Telefónica; Rosa María de la Parra González,
economist and Luis Cayo Pérez Bueno, Technical Director of the Spanish
Committee of Representatives of People with Disability.

Finally, I would like to express my thanks to my personal secretary, María José

González Arribas and to José Manuel Morán’s personal secretary, Purificación Val
Pérez, who contributed with their always excellent work in preparing texts,
arranging meetings and shuffling agendas that always seemed to be at
loggerheads. I would also like to add my very special recognition of the translator,
Paul House, who was faced not only with a specialised text plagued with the jargon
of the world of disabilities, but had to work whilst incorporating last minute
changes and corrections. It was his unflappable nature and professional approach
that made it possible to complete this adventure within the programmed time
limits. My thanks to Sallie Russell who revised the final version.

And last, but certainly not least, this list of acknowledgements would not be
complete with mentioning Jesús Campos, The Director of Ediciones del Umbral,
and all of his team who once again deployed all of their professional know-how and
made room in their crowded publishing schedule to take on one more task for a
friend. It was they who brought on board the excellent bookbinders Miguel Ramos
and his team who moved heaven and earth so the book could be presented on the
occasion of the European and International Year of People with Disability in 2003.

12
 Chapter One
INTRODUCTORY ASPECTS

1. PRESENTATION

1.1. Background

Since its creation, one of the major areas of concern of Club of Rome has been
the dignity of all human beings and the quality of life of the inhabitants of this
Planet. The Club has always known that the future of Humankind will depend
on our peaceful coexistence, in a world where the differences between the
members of our large human family are accepted, and where no human being
is excluded or limited because of his circumstances or abilities. Thus, when at
the end of the nineteen nineties, the then Chairman of the Club of Rome,
Ricardo Díaz Hochleitner, invited the Organización Nacional de Ciegos de
España (ONCE – the Spanish National Organisation of the Blind) to collaborate
with the Club via its Foundation, he stressed how decisive it would be for
human progress to make disability visible, bringing it out into the open, and
making it possible for people with disability to become integrated members of
every aspect of our economic, cultural and social life. His invitation made it
possible for the first time for a person with a severe visual disability, Rafael de
Lorenzo, to lead the Club in a debate about the new horizons for people with
disability in the modern world, and to consider the social values and paradigms
that will be necessary to assist people with disability in their efforts to become
an integral part of society.

From the ensuing debate and dialogues, in which the sensitivity of Ricardo Díaz
Hochleitner and the willingness of the members of the Executive Committee to
become involved were always evident, it was almost a matter of course that,
on the occasion of the annual meeting of the Club of Rome in Vienna in
November 1999, Rafael de Lorenzo’s proposal to draw up a report on The
Future of People with Disability would receive such a warm welcome. In his
address to the Club, the essential content of which has been included in this
report in the section entitled Expectations for New Times, he suggested that a
Report be drawn up along the lines of others drafted for the Club of Rome,
such as Aurelio Peccei’s work on Human Quality, which examines technological
advances and other major changes that have taken place in recent years.
Rafael de Lorenzo proposed to continue to show how these changes should not
be allowed to affect the essential message implicit in those earlier works,
where the principle theme was the preservation of human dignity, the defence
of human rights and the promotion of human development in an environment
of solidarity.

Taking into account the advances and new issues that conform today’s social

13
context, the Report in question would aim to contribute to the development of
new values and propose new ways for inter-personal cooperation. Its
objectives are to promote better understanding of how people interact and
forward the idea that today, through cooperation, people can find mutual
support and understanding. It would seek to convince society that diversity can
be an instrument for development and a way to build a more just social and
economic order, without sacrificing efficiency. Likewise, the Report would
forward proposals for preventing discrimination and exclusion, and emphasise
that the future we seek, where people with disability will be full participants in
all aspects of society, must be based on a new paradigm that defends and
promotes human diversity.

In order to achieve these objectives, it was proposed from the outset that the
Report be structured in four major thematic sections, as follows:

1) An overview of the situation of people with disability in today’s

society and their integration in the different aspects of daily life:
Special emphasis would be placed on the fact that these
circumstances vary significantly from the economies and societies
of less advanced countries to those which are relatively more
developed. This initial overview should, likewise, emphasise that
while international bodies have made recommendations to
promote the inclusion of people with disability in society, these
recommendations are not reflected in specific policies or practices.

2) An initial inventory of opportunities for the integration of people

with disability in the economic and social order, specifying
solutions and tools, some of which are already available and
others that will be developed once the adequate policies and
programmes to make this integration effective have been defined.
In this section, special attention is paid to integration in the areas
of education and labour, and to participation in the social and
political spheres.

3) A reference to the importance of incorporating disability into

collective life, with an analysis of the implications of this shift that
will require developing new values to promote cooperation, while
establishing that competition and social cohesion are not
incompatible.

4) A final section dedicated to mapping the paths for the future of

mankind based on solidarity, as invoked in our Objectives. This
section includes proposals which may help prevent the polarisation
of society with the creation of first and second class citizens,
encourage cooperation, facilitate the distribution of scientific and
medical advances throughout the world and uphold the dignity
and quality of human life.

14
In view of the foregoing, the Club of Rome asked Rafael de Lorenzo to prepare
the report in question. A meeting, attended by Ricardo Díez Hochleitner, then
Chairman of the Club of Rome, Uwe Moeller, General Secretary of the Club and
his assistant, Helmut Trumpfheller, was held in Madrid in November 2000 to
establish the timetable and methodologies. The General Secretary of the Club
issued a series of considerations, among which we should like to emphasise the
consideration that while the report should be made from the standpoint of
disability, it should also include broader horizons. This focus does not mean to
imply that the problems of people with disability should be confused with those
affecting other groups at risk of exclusion, but that the social integration of all
groups of people can only enrich our world. In this sense, the report
endeavours to defend the right to equality, and promote a spirit of solidarity
with all groups of people.

Finally, The Club of Rome’s General Assembly held in Ankara at the end of
October, 2002 approved the draft report. The final version of the text thus
includes the suggestions that arose during the Assembly’s debate and in
discussions with members of the Executive Committee, Patrick M. Leidtke and
Keith D. Suter. These changes were incorporated at the beginning of the
following year, and the revised version of the report was ready for publication
in the spring of 2003.

1.2. Methodology

The Director of the Report made the following proposals as guidelines for the
Report:

1º) a group of international experts would be consulted concerning

the subjects forming the backbone of the Report. These experts
would be asked to provide written contributions in their areas of
expertise, and this material would then be incorporated into the
report;

2º) once the Draft of the Report had been drawn up it should be
reviewed by the experts designated by the Club of Rome and by
other professionals, whose suggestions and contributions would be
used to improve and fine tune the text; and

3º) by counting on appropriate collaborations, the real situation of

disability in the different countries throughout the world should be
documented by making use, especially, of the statistics provided
by international organisations and agencies.

At the same time, a Technical Committee was set up. This committee was
responsible for specific tasks involved in compiling and writing the Report and
for integrating all the different contributions received. The Executive
Committee has played a decisive role in supporting the work of the Director of
the Report.

15
2. THE REASONS FOR THIS REPORT

When, in the autumn of 1999, the Club of Rome accepted Ricardo Díez
Hochleitner’s suggestion to commission a Report on The Future of People with
Disability it was aware that this subject had a growing importance in the world
today, for two reasons. In the first place, because people with disability are
desperately in need of special consideration to prevent social exclusion. People
with disability have every right to demand that an end be put to discrimination
and to demand the necessary support to enable them to make the most of
their abilities and knowledge, and to contribute, along with the rest of society,
to human development. In the second place, because there is a tendency, due
to scientific and medical advances, towards an ever-larger aging population,
and this phenomenon will give rise to a different kind of disability. The
disabilities of the aged can also lead to exclusion and may limit the possibilities
for the aged to continue to lead socially active lives.

These arguments are based on the fact that there is a growing number of
people who do accept that their personal potential should be limited by their
circumstances: To this end, the Report must be a testimony, as a paradigm of
what men and women can do, of the efforts being made to help people over-
come, both individually and collectively, their disabilities. Likewise, it must
bear testimony to the scientific and medical advances and technological devel-
opments supporting these efforts. Moreover, the Report should emphasise the
perception of disability as a problem that can be approached and solved; it
should stress the policies implemented in the social, economic and technologic-
al spheres aimed at promoting inclusion. Therefore, to speak of disability and
the future of people with disability specifically means to insist on arguments
against a dual track society and against indifference, in favour of a search for
innovative, far reaching solutions. These solutions should serve the needs of
the disabled community and of other collectives at risk of exclusion, as large
numbers of the world’s population suffer from the effects of social exclusion.

The issue of Disability is included in many charters on human rights and it is a

point of reference for inclusive societies. However, there is a gap between the
official declarations and resolutions made by international organisations, and
the application of these principles and standards in daily life. This only
highlights that not enough is being done to counteract the problem of
exclusion. This, at the end of the day, only limits the potential of society as a
whole, wasting, as it does, the capabilities and dreams of people who are often
excluded simply because nothing is done to put human advances and
resources at the service of everyone.

Finally, modern society must develop a new paradigm that accepts disability as
a form of diversity, and that promotes cooperation by applying technical
advances to improve the standard of living for all, in a spirit of solidarity. It
should show how human will, rather than scientific advances or standards, can
give these people back their hopes and dreams, providing an environment
propitious for personal development and integration.

16
3. THE PRINCIPLES BEHIND THE REPORT

This Report ultimately strives to broaden the perspectives of human quality,

using the phenomenon of disability as a starting point, and intends to show
how the integration of people with disability can enhance the potential of
society as a whole. Thus, the Report is based on the principles of transforming
humanism, geared towards the development of Humankind. Essential to
development are the principles of equality, solidarity and cooperation, and
these can only be established through training, employment and full
participation in society.

In keeping with these ideas, the Report was drawn up in the understanding
that to make these principles reality, it is necessary, in the first instance, to
take an inventory of how people with disability live today in the different parts
of the world. Once this assessment is made, it will be possible to act on the
external factors that limit the quality of people’s lives and, more specifically, on
the internal limits imposed by cultural perceptions, traditions and values that
must be transformed. The authors believed it would be more constructive to
formulate proposals and suggestions for debate, rather than to provide a mere
quantitative or geographic description of the current situation of disability in
the world. However, for a meaningful debate to take place, it is necessary to
truly understand the reality of people with disability, depending on the type of
disability they experience and the context of their socio-economic
circumstances and of the technical developments that affect them. It is in this
context that the concepts of design for all and universal access are introduced,
with the proviso that these, in and of themselves, are not sufficient to
overcome inequality or to guarantee inclusion.

The Report includes a reflection on how diversity can enrich society as it can
contribute to our collective intelligence through shared learning and
interaction, and it emphasises the specific contribution that people with
disability can make to social development and the development of human
awareness.

4. THE PREMISES OF THE REPORT

For analysis of the current situation confronting people with disability,

whenever available, the Report drew on proven statistical data. The review was
based on the study of international regulations and recommendations and led
to the conclusion that, in general, the problem has been well diagnosed, but
that the application of specific solutions has been poorly attended to.
Furthermore, given the different situations and the gaps between mainstream
society and underprivileged groups, it is not possible to make generalisations.

Likewise, in accordance with the objectives of the Club to produce a document

that focuses on disability but that takes a wider stance, the Report considers
the importance of conserving, and taking advantage of human diversity. The

17
objective of this reflection is to increase awareness of the need for solidarity,
and to strengthen commitments for the defence of equality and mutual support
of people throughout the World.

The Report also makes reference to the economic aspects that have an impact
on the lives of people with disability, highlighting those affecting certain groups
in danger of exclusion, with special mention of the elderly. This, however, does
not imply that we are equating disability and old age, or the disabled
community with other collectives at risk of exclusion from our social and
production systems.

To these considerations we should add that, any Report undertaken under the
auspices of the Club of Rome, should of necessity reconsider the historical
context we are living in. We should clarify our commitments to Nature, and the
commitments future generations will have to take on. This means it is
necessary to think about the material resources we are leaving, especially with
regard to the cultural and moral values we are passing on to the next
generation. Therefore, it is always necessary to bear in mind the problems of
poverty and its sequel of social exclusion. Issues affecting natural resources
must be considered, along with the notions of the governance and cohesion of
complex and interconnected systems, although these are not explicitly
developed in the pages of this Report. Reference must also be made to the
concept of sustainability, especially its newer dimensions, which so directly
affect human dignity and quality of life, the development of new awareness,
the construction of networks of cooperation and the processes of collective
learning.

Likewise, in a Report of this kind, attention must be paid to the trends detected
in consumer habits, cultural manifestations, lifestyles, family models, leisure,
work and ways of participating in social and political life. Uncertainties should
be pointed out together with the opportunities that are opening up for
everyone, provided that all people can be integrated socially and be the
protagonists of their own lives and participate to the full in their communities.
It is, therefore, necessary to consider the maelstrom of changes that the
population is living through, and to identify which of these are vital to the
process we are advocating. It is especially important to identify those that
have a positive effect on solidarity and equality and those that, to the contrary,
contribute to human unrest.

The Report, thus, examines disability from all of these angles, and from the
perspective of the problems and the challenges facing the human race.
However, the Report also hopes to provide some insight into how we can usher
in a new era, based on the ethics of solidarity and respect for diversity, where
it will no longer be necessary to clamour for a change in the values required to
build and live in a world that embraces all people, no matter what their
circumstances.

18
5. THE CONTENT OF THE REPORT

After a brief presentation and the introductory considerations outlined in this

first chapter, the content of the Report is organised in four main sections.

The second chapter is headed “Disability and the new dilemmas for Humanity”.
It contains a reflection on the anxieties and expectations with which Humanity
contemplates the future. A synthesis is made of the situation of people with
disability throughout the world today, followed by a discussion of their hopes
and expectations in the context of their particular circumstances, factors that
vary depending on their economic, social and cultural status. A review is made
of the long road already travelled by people with disability to achieve full
recognition of their rights, with an analysis of the way society perceives
disability; the statistical and legal realities of people with disability throughout
the world are discussed, along with national policies on disability and the way
that social changes, and the challenges brought about by these changes, affect
people with disability.

The third chapter, headed “The opportunities which exist and which may be
created”, is an examination of the different areas that are relevant to the
participation of people with disability (education, employment, social security
and protection, technological change and scientific and medical advances,
leisure and culture activities, social life and participation in development). It
examines various solutions and instruments which are already available in our
societies and which could be better distributed if the policies and programmes
to make them effective were put into practice.

The fourth chapter, “The quality of supportive life”, is a reflection on what the
experiences of people with disability can contribute to society as a whole,
especially with regard to the development of new values such as solidarity,
cooperation and equality. These experiences can be put to profitable use to
help construct a transforming humanism that will spur the development of
Humankind and create a society where competition is not in conflict with
cohesion. An in-depth examination is conducted of “social capital” and its
effects, and an analysis is made of how social cooperation can help establish a
more dignified society in which everyone has the right to full citizenship.

The report concludes with the fifth and final chapter in which an examination is
made of the road still left before us if we are to build a future in which
solidarity, and acceptance and respect for diversity form the basis of a more
equal and just social order. A series of proposals are made for future debate
and actions in the area of human development and disability.

19
 Chapter Two
DISABILITY AND THE NEW DILEMMAS FOR HUMANITY

There is sufficient historical evidence that human development does

not necessarily go hand in glove with material progress. Even in
times of economic expansion, there are people who are unable to
take part in society’s prosperity. People with disability are generally
among this group, and their desires and hopes to take part on equal
footing clash with the circumstances they are forced to live under.

People with disability have already come a long way towards

achieving full citizenship, in a process that has included the efforts
of their families, the associations that represent them, professionals
and institutions. However, there are still many physical and social
barriers that prevent their full participation in society. Besides an in-
depth analysis of the way in which society looks at disability, this
Report provides a review of the statistics that quantify disability
throughout the world, and looks at the legal realities that affect
people with disability, different national policies on disability and
the way that social changes and the challenges these changes bring
about affect the lives of people with disability.

1. EXPECTATIONS AND UNCERTAINTIES FOR THE NEW TIMES

In light of the principles underpinning current thinking on human development,

and in compliance with the premises laid down for the Report, it is necessary
from the outset to state that if we are to encourage integration, and if a multi-
cultural society is to truly flourish, it is not sufficient to assume that the
recognition of differences and the creative potential of diversity will
automatically be embraced as a human value, if we fail to examine all the
facets involved. Very often differences between people do not merely arise
from cultural differences or differences in beliefs, or from different levels of
income and social standing, but from other inequalities which have their origin
in a person’s functional capabilities and development.

This means that the risk of creating first and second class citizens stems not
only from different levels of material resources, but that discrimination may
also ensue from the barriers erected by our social and cultural habits and
production systems that can exclude people with different personal capabilities.
And exclusion has a double negative impact: On the one hand, it diminishes
the people who are its victims, who may react by limiting their own
expectations of life. However, on the other, it deprives society itself, which is

20
unable to tap the potential of some of its members, in this case of people who
live with some kind of sensorial or mental limitation or who, at the end of their
lives, find that their faculties have deteriorated.

Concerns of this nature are not new to the Club of Rome. It has always held
that sustainable development is not enough, but rather that it must play an
integral role in a human development which permits each person to reach
his/her highest potential in accordance with his/her capabilities. Sustainable
development must also eradicate the different risks of exclusion.

As Aurelio Peccei pointed out in Human Quality, the evolution or involution of

existing and latent human capabilities does not have to occur simultaneously
with material progress. It should not, therefore, seem strange that even in
periods of unprecedented economic expansion there are people who are unable
to find a way to take part in this prosperity.

Among these people are those who suffer from serious disabilities and who
want to work but who cannot find jobs. What is a lost opportunity for them is
also a wasted opportunity for the rest of the world, and solving this conundrum
is a challenge that goes beyond the merely economic aspects of the problem.
As Ricardo Díez Hochleitner pointed out in his Spanish extension of the
aforementioned report, the evolution of Human Quality requires not only a
broad vision of the problem as a whole, but also of its moral and ethical
connotations and a permanent reference to the values of liberty, equality and
justice. These are references that, as Aurelio Peccei pointed out in Testimony
on the future, have their key manifestation in the quality of people, their
capacity to face extraordinary challenges, and their ability to make the most of
the equally extraordinary opportunities of their times.

The Club of Rome, while never losing sight of this human perspective, has
been analysing the consequences of unlimited growth and technological
change, the difficulty in governing ever more complex systems, new economic
and financial systems and the limits of social cohesion in human development.
These consequences, together with those derived from the revolution we are
witnessing in information processing and in market connectivity, are increasing
the risks of polarising society and opening the door to new forms of exclusion.
New social patterns are emerging in response to these changes, while patterns
that do not comply with models defined by economic productivity and
profitability are being discarded.

In this process, however, Humanity is becoming aware that it is impossible for

Man to maintain a relationship with Nature that ignores these limits and their
ultimate consequences. We have, furthermore, begun to learn that problems
are interrelated and that overpopulation and the scarcity of educational and
material resources are not isolated phenomena. We are beginning to see that
the consequences for future generations may be more catastrophic than they
appear now, and issues like conserving bio-diversity have, accordingly, become
important. However, humankind has yet to realise that, in this confusion where

21
progress and underdevelopment, opulence and abject poverty live side by side,
no system of values is being developed to help assimilate technological
advances, so they can favour everyone. Solidarity between people is lacking as
well, as it is only by sharing wealth and opportunities that we can forge the
axis of sustainable behaviour patterns. It is absolutely necessary to adopt
values that promote the idea that equality in diversity is possible, and that
equality must be a part of all aspects of life. It is only with this conviction that
we will be able to take advantage of the spiritual potential that all members of
society have to offer from the time they are born to the time of that they die,
whatever their human condition may be.

For this reason, the new dilemmas facing Humanity are not only technical and
economic, but they are interpersonal as well. Humanity must seek to discover
“the other” and share with each other a common destiny enriched by the
differences of each individual. It is of paramount importance that we re-think
the model of development we want to follow.

We have just reached the end of a century characterised by enormous social

and technological advances that have ushered in improvements in
communications between individuals and between societies. These changes
have been so rapid that it is almost impossible to assimilate them. At the same
time, the foundations have been laid to create a new world order based on
global dimensions, on-going interaction and the internationalisation of
fundamental factors in our traditional models of political, social and economic
organisations. These advances have led to a growth in activity and
consumption heretofore unimaginable. This growth, however, has not been
socially neutral. It has brought with it negative and undesirable consequences
such as imbalances between the different parts of the world, environmental
tensions, social inequality, cultural shock and conflicts between the values of
different societies and groups. These confrontations have become all the more
extreme following the tragedy of 9-11, although this has, unfortunately, not
been the only recent drama.

Thus, while it is true that economic and technological growth has allowed
unprecedented levels of well-being which have benefited broad social layers, it
is also true that, in general terms, it has led to a polarisation of the human
population. While some people live in prosperous, developed societies, others
live in abject poverty and are victims of all manner of discrimination. More
than 1,000 million people are excluded from today’s prosperity and there are
uncountable regional and local conflicts that are rooted in poverty and despair
for the future. This situation is not confined to the countries of the third World.
Some 15% of the population of the industrialised world lives below the poverty
line.

This situation is all the more contradictory if we bear in mind that the economic
and social model of the post-war years was based on the pursuit of economic
growth, harmonious social development, full employment and the elimination
of social conflicts through the implementation of the Welfare State. The

22
philosophical basis for this model was the search for equality, the practice of
solidarity and the exercise of a regulatory power by the State through justice,
equality and by developing in the citizens a sense of belonging to a society that
shared cultural values, and whose purpose was to promote integration and
happiness.

Today’s challenges are globalisation, interdependence, diversity and

uncertainty. However, we must be careful not to speak of globalisation or
diversity in abstract terms, but with reference to people, human values, the
development of individuals as subjects of this progress and fair and balanced
growth. Only then will we be able to choose the paths of progress and
solidarity at the crossroads where we stand now. These are the paths that we
will have to walk if we wish to recover our belief that men and women can
shape their own destinies.

At this crossroads, we must understand that differences between people are to

be valued, and that they must be integrated into the weave of society. Here,
Humanity must ponder which way to go to avoid leaving underprivileged
people in the backwaters of history. However, here, we have the opportunity of
making the right choice, by relying on our technical knowledge and tools.
Furthermore, we have learned that mechanical repetition of the past is no
guarantee of success in the future. We know that all processes must be
governed from the perspective of the risks involved in any change, and
although there are methodologies that can be used to change directions, there
is no guarantee that once chosen the path we take is the right one.

Another factor in our favour is that progress in medicine and technology is so

spectacular and effective that, if new discoveries can be applied, many natural
disabilities can be overcome. Once this is possible, the consequences of illness
and poverty can be halted, and the most varied diversities can be effectively
integrated. Developments in management techniques and information
processing will make it possible for all citizens to make significant contributions
with their knowledge and skills. In the case of some disabilities, this will mean
using technical equipment and instruments that complement the person's
capabilities to communicate or execute actions that will make it possible for
him to take part actively in social and economic life.

When asked to identify their gravest concerns, citizens throughout the world
named human cruelty which, when witnessed, is seen with repulsion, natural
disasters which remind us of the frailty of our social and economic structures
and unstable employment, or the fear of being unable to earn a living. Our
societies are organised around employment and useful occupations, and many
of our moral values and principles are based on the relationship between
individuals and productive activities. Having a job means carrying out a socially
valued role, being recognised as an individual with rights and obligations, being
at the centre of the virtuous circle of social well-being, whereas being
unemployed brings with it discrimination and the risk of social exclusion.

23
While the value we place on employment is undeniable, we must not forget
that there are people whose physical or mental limitations condition their
participation in our normal production processes where the objective is to
maximise productivity and minimise labour costs to achieve maximum
profitability. We must adopt new values that place Man, with his needs,
differences and expectations in the centre of these processes, as opposed to
our system that is driven by the value of maximum economic profit. This is
coherent with the ideas of human rights and diversity which appear in other
sections of this Report. Certain activities, considered today as marginal work,
should be given the “value” they deserve, although not necessarily according
to the logic of the market. People with disability can provide services to the
community which are not subject to the laws of supply and demand, (business
consultancy, training, telephone help desks, Internet, making web-sites...).
Employment should be adapted to suit the abilities of people with disabilities,
rather than focusing exclusively on production levels that are unattainable for
many people.

We must restore the human values inherent in work, and work must be seen
as a vehicle for people to develop relationships with others, independently of
each one’s capabilities or social origins. Work must become the vehicle that
places the new opportunities made possible through economic development
within the reach of all members of society. In this context, the potential of the
new technologies, especially communications and information technologies,
becomes a tool with incalculable power that should be used to augment the
well-being of all members of society. In the process, however, we should be
very careful not to create first and second citizens.

In view of the foregoing, it is easy to see how a dual track society can be
created, and how exclusion occurs when a person’s disability conditions his
existence. It is appropriate at this time, to make explicit reference to a large
section of our communities, people with disability, who comprise approximately
ten percent of the world’s population. Society continues to turn its back on this
collective, and the expectations of people with disability of becoming fully
integrated members, both in developed and underdeveloped societies,
continues to be very low. Thirty years after the United Nation’s vigorous plans
to help improve policies and programmes for the prevention of, and attention
to disability and rehabilitation and integration of people with disability
everywhere, it is still necessary to make our voices heard in our demand for
fair and supportive treatment for this sector. Standards for integration and
practices to prevent discrimination must be adopted, so that people with
disability the world over can enjoy all the opportunities open to other members
of society.

Modern societies are more than ever aware of this situation, and many
countries have included the eradication of discrimination and the promotion of
integration in their constitutions and legislations. However, these are formal
aspects that do not necessarily contribute to real and effective integration. The
inability of the Public Authorities and of the different social groups to promote

24
effective integration is a manifestation of the social inefficiency of the systems
we have created. It is a clear example of how the moral values and standards
we use in our public discourse and rhetoric are not those we apply in our
business affairs or our daily lives.

The development of a cohesive and inclusive society requires the effective and
real application of the principles of equality and solidarity as the clearest
expression of the values that sustain the human condition. However, it is not
just a case of achieving the formal recognition of these principles and
enshrining them in the legal frameworks of our societies. Rather, it is a
question of ensuring that these principles lie at the very root of our daily
practices and our moral sense of living together. It is a question of promoting
attitudes, values and practices that will provide people with disability access to
all the circles of activities, occupations, rights and obligations that are part of
the life of any member of society.

Many people acclaimed the European Parliament when it declared that the
exclusion and discrimination of people with disability was a violation of
universal human rights. Respect for, and the promotion of, human rights and
human diversity have been traditional characteristics of the societies of the
most prosperous areas in the world, and form an essential part of the common
values of their cultures. People with disability must be made to feel that they
can exercise the right to be themselves and to be so shoulder to shoulder with
their fellow citizens. For this to happen it is necessary to stimulate a spirit of
initiative and to banish attitudes based on resignation and the acceptance of
the limitations that our social condition, disability or old age may determine.

Values, such as mutual support for each other and individual freedom, must be
adopted so we can build new horizons based on diversity, so that all members
of society can feel themselves to be unique, and yet a part of a supportive
society. To leave these values as a legacy for future generations is as
important as passing on an unspoilt and unthreatened environment. Such a
legacy, based on fraternity, will provide a new spirit to promote substantial
changes in our daily attitudes and practices.

To achieve this goal, we must first be aware of the reasons for the exclusion
that many people with disability experience and that feeds a sense of
helplessness. We must have a clear idea of how people with disability are
treated differently with regards to education, work and leisure activities in
different societies and cultures. Likewise, we must be aware of what
technology can do to readjust the balance of these differences, what policies
can be implemented to nurture the expectations of all citizens, how services
should be organised and what commitments should be taken on by the Public
Administrations and private organisations when confronting the demands of a
population whose life expectancy far exceeds even the wildest dreams of
industrial and rural civilisations of the past. All of this requires an analysis of
the current situation so we can identify opportunities and threats. To do this
we need the courage to imagine in the first place, and to go forwards in the

25
second, towards a new model of society that, rather than valuing and
promoting uniformity, is based on the dignity of each individual and her right
to control her own life. It is the responsibility of all of us to take part in, and
guide this process, but we should remember that the Public Authorities have a
specific responsibility to this end.

An effort must be made to explore the new possibilities open to us.

Technological developments are providing new opportunities that must be
oriented towards strengthening the values that will lead to a just society. This
goal is well within our reach, and we should be optimistic about the efforts that
have already been made by many people with disability, and the dedication of
the many people who are committed to the process of integration. This work is
already bearing fruits.

Thus, the Club of Rome's contributions must include a new collective reflection
on the future of Humanity and, specifically, on human development and people
with disability. This reflection cannot ignore the Gordian knots invoked by
Federico Mayor and whose undoing holds the key to the future. The knots are
tight and, in some cases, tighter for those with sensorial, motor or mental
disabilities. Yet, a way will be found to undo them, if we succeed in putting all
our knowledge and technical skill behind the pursuit of a new human frontier of
integration for all those who do not choose to be excluded.

We must also bear in mind that technical know-how and economic capacity will
be insufficient in and of themselves to help advance towards this future. As
Aurelio Peccei and Daisaku Ikeda point out in Before it's too late, the greatest
problems of our day are still spiritual and ethical ones, and cannot be solved
merely by applying material and cognitive means. These problems pulsate in
the innermost being of every person. It is only when we renew our values that
we will be able to aspire to an understanding of these new challenges and to
face them with the serene hope that comes from knowing that if we better
ourselves, recognising ourselves in all those who surround us, we will be
capable of overcoming the threats of the future. Only thus will we be able to
free ourselves from these knots of exclusion and discrimination which prevent
many people with disability from becoming part of active life. Only thus will we
bring about their complete integration.

Hence, any study, any action undertaken in an attempt to achieve these

advances, must be based on promoting the development of each and every
person. The most significant aspect of this human adventure will be the quality
of the actors. However, the only way to ensure quality, regardless of equal
opportunities (which would, at least, be something), is to first witness the birth
of a new humanism that will ignite a spiritual rebirth inside all of us, kindled by
our capacity to dialogue with people who are different from ourselves. This will
be a new humanism from which no one will be excluded and in which disability
and other expressions of human diversity, with their challenges and
contributions, will enrich the quality, capacities and resources of all of society.

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2. THE EXPECTATIONS OF PEOPLE WITH DISABILITY

2.1. The realities of disability: A portrait in grey

In recent decades, many of the obstacles that have long barred the social
integration of people with disability and other minorities have been overcome,
in a process that has drawn together the efforts not only of the protagonists of
these changes, but of their families, the associations that represent them and
specialised professional institutions as well.

Yet there is no doubt that social barriers and physical obstacles still limit the
participation of people with disability in today’s society. People with disability
have far fewer opportunities to lead a fulfilled life, because they continue to
face difficulties in acquiring such fundamental social tools as an education or a
job. Many are excluded from vast areas of society, finding them utterly
inaccessible because of their impairments.

However, what we tend to forget is that the greatest barrier to integration is

within our own minds. Frequently, when we think of people with disability we
merely focus on the disability, the element that makes the person different.
We conjure a generalisation based on this single aspect, and ignore the other
characteristics, circumstances and qualities that make up the person. With this
mentality, it is easy to forget that all members of society have the same value
and the same rights.

Overcoming this barrier within ourselves will help promote a fairer society,
where primary elements are fairly distributed. These primary elements include
freedom of speech, freedom of movement and the freedom to choose a
profession, but the most important of them, beyond any doubt, is self-respect.
Fully exercising the right to freedom of movement and the right to freely
access all social spaces is, to a certain extent, the key to developing a sense of
self-respect and personal fulfilment.

We must ask ourselves whether a society that still harbours institutions and
situations that are a source of humiliation for some of its members can be
considered fair. Social exclusion is a reality even in the most developed
societies, where economic progress and formal democratic development are
unable to guarantee social justice. The European Disability Forum (EDF) states
that, although not all citizens with disability of the European Union are socially
excluded, the systematic discrimination they suffer and the social, educational
and labour barriers they must overcome mean they are much more vulnerable
to social exclusion. Together with social exclusion come poverty, both in
economic and social terms, and isolation, of the person with disability and her
family. Various studies carried out in Europe have identified three factors that
raise the risks of social vulnerability:

1)Low income, related to insufficiencies in the social welfare system

27
 and difficulties in obtaining employment.

2)Additional costs related to disability.

3)Barriers erected by discrimination and exclusion from social

services or activities.

Furthermore, the correlation between a person’s level of education and training

and social exclusion is well known. Once again, the place where we live,
accessibility to infrastructures, priorities of local, regional and national policies
are external factors that all help determine whether a person with disability will
be able to receive a truly inclusive education, with all the advantages it entails,
or whether he/she will be condemned to the circuits of discrimination where
opportunities are reduced for all persons who have disabilities.

The ideal of reason in the social world is not, therefore, welfare, but justice... to decide what
is fair does not, then, depend on individual characteristics, but requires the discovery of
universally extendable minima, without which human beings find it difficult to live a truly
human life. The ideals of welfare are questions of individual options. The ideals of justice, on
the other hand, are requirements that society should satisfy for each of its members, unless it
is to fall below the minimum limits of morality.

Adela Cortina, Professor of Ethics and Political Philosophy in the University of Valencia (Spain)

All citizens should be able to interact with their environment independently and
under equal conditions. The largest number of people possible should be able
to use a building, a public space or means of transport unaided by others, and
all public installations should be designed and built to make this possible.

It is obvious that when an environment is designed with the concepts of

universal access and design for all, it serves the needs of the entire population,
and not only those of people with disability who might otherwise be its
principle users. An accessible lift has enhanced lighting and is larger, its
acoustic information system gives complementary information to everyone, not
only to people with impaired sight and, more importantly, it is used mostly by
people who have no disability at all. Therefore, why do we still have
architectural barriers? Why do we continue to design environments, cities and
buildings without thinking of those, ninety percent of the population, who have
shown that they prefer designs that are accessible and more comfortable for all
of us? An accessible place is a place that is easy to use. It is a place of
convergence, a meeting point, because it is a place we can all share.

Creating environments that can be shared by all enhances competition. In our

new knowledge-based society, pooling expertise, the product of participation,
the sum of the capacities and potential of the general public all generate value.
However, accessibility goes beyond access to the built environment. We need
to promote a less visible, yet more complex type of accessibility to all the
products and information systems available in society, and it is in this context
that the concept of design for becomes most meaningful. When a design is

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made for persons with severe disabilities, everybody benefits because the
system will be easier for everyone to use. Systems and products designed with
these criteria are simpler to learn to use, and they generate a lower rate of
error. All human beings generally seek the greatest efficiency with the lowest
effort, and these kinds of designs respond to this desire.

Society creates obstacles when it is not adjusted to the diversity of all its members.

Towards a society for everyone: long term strategy for promoting the application of the World
Programme of Action Concerning Disabled Persons to the year 2000 and following.

However, experience shows that for the concept of design for all to become the
norm, it is not enough to improve the quality and usability of products. It is
also necessary to make the market more sensitive, to improve standardisation
processes and to pass legislation making it mandatory for all products and
services to take into account the requirements of all the members of the
general public.

But there is more to it than this. Current public opinion calls for a more
ecological society, where we all form part of an open ecosystem that places
equal value on all its elements, considering each one essential to the survival
of the system. A society with room for everyone, that respects the
environment and its inhabitants, one that is sensitive to the requirements of
the elderly, of pregnant women, of the sick, of immigrants who do not know
the language or the culture, of persons who, for whatever reason, find
themselves in a vulnerable position is a truly integrating society.

In view of the foregoing, we should ask ourselves whether we have really

advanced towards the restitution of the rights of all groups; whether we are
really moving towards a more decent society which will treat all its members
with human dignity.

2.2. The roads towards a modern society

Accepting the idea of impairment as something that can be prevented or

modified has been a giant step towards a modern society with new attitudes
towards disability. Today, we have at our disposal mechanisms to help
overcome human and social problems; we have the knowledge and skills to
change past problems, and we attempt to modify inappropriate habits and
customs. Vaccination and prevention campaigns geared towards eradicating
certain disabilities have made substantial inroads, while other measures help
palliate the disabling effects of an impairment. These have all contributed to
gradually enlarging the horizons of social integration.

However, even at the beginning of the 21st Century the figures speak for
themselves and show just how much we still have to do in this field. Bearing in
mind that the socio-economic conditions of the less-favoured groups
significantly increase their risk of suffering from a impairment, how can we

29
make advances in prevention when fifteen percent of the population in
industrialised countries live below the poverty line or when, of the 4,600
million inhabitants of the developing world, almost 1,000 million have no
access to drinking water, and 2,400 million have no access to basic health
services? What can we do about disability when, according to the conservative
figures given by Kevin Bales, there are 27 million people living in slavery
throughout the world? How can we broaden the horizons of integration when
there are still so many countries in the world where human rights are ignored?

The principle of equal rights for people with and without disability implies that the needs of
each and every individual are of equal importance, that these needs must be made the basis
for the planning of societies, and that resources must be employed in such a way as to
ensure, for every individual, equal opportunities for participation. Nevertheless, when we
relate this statement to the situation of disabled people around the world, it becomes
extremely relevant. The needs of disabled people are not taken into account in the "planning
of societies" and the resources are not employed to ensure "equal opportunities for
participation".

If I, after thirty years of work in the international disability field, were to choose one word to
describe the situation of disabled people, I would without any hesitation say "exclusion". By
international standards of classification there are at least 500 million disabled people in the
world. Due to several factors, the number is expected to rise. Millions and millions of disabled
people in developing countries lack access to education, have poor health conditions, are
poverty stricken and socially isolated. It is a well-known fact that there is a close link between
disability and poverty. Disability leads to poverty; poverty leads to disability.

Beng Lindqvist, Special Rapporteur of the United Nations Commission for Social Development
on Disability.

Just as poverty causes disability, disability causes poverty. Data from the '90's
show that the average family income is significantly lower if the main
breadwinner suffers from a disability, because people with disability are
generally under-employed, and must content themselves with precarious
labour. In the United Kingdom it has been shown that there are proportionally
fewer people with disability than non-disabled people who are home owners,
and that people with disability are more likely to be poor when they reach old
age. Sixteen percent of all people with disability in the United Kingdom are
poor, and this percentage increases to fifty percent if the statistics take into
account not only the level of income, but also the additional expenses incurred
in connection with the disability.

The risk of unemployment continues to be two or three times higher for people
with disability compared to non-disabled people, and all studies carried out to
date demonstrate the significant role played by employment in preventing the
risk of social exclusion, and all its implications for people with disability.

Throughout this long journey, which is still far from its final destination, certain
events have played a crucial role:

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Although not all persons suffering from disabilities have always been the
victims of discrimination (the war-wounded have generally been an exception),
traditionally the physically handicapped, the mutilated, the blind or people with
mental impairments were relegated to marginal social positions and poverty. It
was only after the ideas of the Enlightenment started to take hold, and the first
modern democracies were born that this situation began to be considered
unfair. The disabled were forever socially under-age, in contrast with other
people who came of age and gained full rights as citizens. This imbalance
eventually began to be seen as unsustainable. The Age of Enlightenment
assigned a new role to the poor and the socially unproductive and offered
people with disability assistance, although not full citizen’s rights. With the
arrival of our modern Social Security systems, the invalid became the object of
protection and began to receive social and healthcare as well.

The period between the Wars brought with it another paradigm, the paradigm
of rehabilitation. This was a significant change that gave people with disability
a new role. They became patients or “clients” receiving medical assistance and
treatment to correct or modify their physical, mental or sensorial state. It was
during this period that more rehabilitation services became available for people
with disability.

The paradigm of rehabilitation helped overcome the traditional focus of

disability centred on the opposition between the “abled” and the “disabled”, the
capable and the incapable. It was the beginning of the modern approach,
where impairment was seen as something that could be modified, requiring a
multi-professional therapeutic and rehabilitation approach.

This move forward did not mean that earlier models had been supplanted, but
rather that they co-existed; and although innovative ideas took hold,
fundamentally in professional circles, the social environment continued to be
firmly anchored in obsolete notions.

An example of the scope of the paradigm of rehabilitation is reflected in the

attitudes of the International Classification of Impairments, Disabilities and
Handicaps proposed by the WHO in 1980. For the first time, this system makes
a much more specific distinction between the organic situation, the functional
capacity and the relational problem, and evaluates these factors from the
perspective of the paradigm of independent living. This change unquestionably
produced a revolution in the world of disability.

The growth of the movement that advocates independent living for people with
disability has meant leaving behind the rehabilitation framework and beginning
to demonstrate that people with disability can manage their own independent
lives away from medical institutions and services. This movement has begun to
take hold in Europe, and has prompted new focuses and concepts that have
clear social repercussions. Among these is the principle of mainstreaming,
proposed by professionals working with people with mental impairments, that
forwards the idea that these patients have the right to be considered and

31
treated in the same way as everyone else. The term “mainstreaming”,
however, has been difficult to define, possibly because of the ambivalence of
the word itself.

In the field of mental impairments, in the United States the new "paradigm of
the mentally retarded" has had, and continues to have, a great deal of force.
Although it shares certain positions with the principle of mainstreaming, over
the years, it has spurred the development of an innovative methodological
body for understanding this impairment.

The attempt to integrate people with disability into the mainstream of all
aspects of life led to dismantling special education systems in the USA. In
Europe, mainstreaming in education has been considered, and is a measure
that became more widely accepted with the paradigm of independent living.

Mainstreaming does not solve all the problems but if it is applied well it does not create
additional barriers and it solves many problems. The better the mainstreaming, the fewer
special services are required, although certain essential services will always be required for
the people with disability who cannot take advantage of mainstreaming.

Stefan Trömmel, Director of the European Disability Forum.

The most significant feature of this movement is that it comes from the bottom
up with the primary aim of de-institutionalising people with disability. People
with disability want to define the kind of integration they desire, identify the
professional services they consider necessary and have the power to organise
their own programmes. This movement arose as a natural extension of the
demands and conquests of other minorities in North America, and it is one
more aspect of the fight for human rights. It can only be understood in this
context, which is where it currently continues to thrive.

The period between the Wars also gave rise to the science of Ergonomics with
its systematic focus on the relationship between man and his workplace and
man and his environment. Ergonomics has made a significant contribution to
the modern design of space and aids for people with disability, and has been a
major influence behind the concept of adapting work to man. This shift in focus
has been influential in helping people with disability gain employment. The
congress on Ergonomics and Disability held in 1982 in Lorient (France) coined
the concept of “situation disability”, defined as the lack of harmony between
man and his environment, where both elements are seen to either attenuate or
accentuate this imbalance. If disability presents an obstacle to resolving a task,
and if there are technologies that can either help overcome these obstacles, or
create new ones, disability can be conceived of as a dialectic, or a changing
concept. It is clear that obstacles can be eliminated or minimised by designing
environments that are compatible with the tasks to be carried out by a specific
person. The concept of Ergonomics proposes that the environment and the
activities carried out in it be adapted to the person, and not the other way
around, as has been the norm to date.

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This change in thinking, where the environment is adapted to the needs of the
person, can serve as a bridge between the paradigm of rehabilitation and the
paradigm of independent living. This concept considers the individual as
possessing certain needs, forces, skills, deficits and limitations within the
context of the environment where the individual is working and living. In turn,
this environment provides certain resources and opportunities to help meet the
demands and expectations of the individual and help optimise her relationship
with her surroundings. The emphasis now encompasses not only the capacity
of each individual, to include her environment, seen to either facilitate or
impede the development of her activities. Some environments are truly hostile
to many people (the elderly, people with disability, children, etc.). Others form
a necessary part of human activity (schools, work centres, museums,
theatres...), and yet, as a result of their inaccessibility, erect barriers to true
participation. Analysing our environments in these terms helps put things in
their place; it is clear we must all share responsibilities and become aware of
the part each one of us must play, both individually and collectively, in this
process.

These are the ideas behind the concept that has been coined "Design for all”.
This concept places the actual needs of persons with disability at the very core
of all design processes. It provides a vehicle to help all citizens satisfy their
rightful demand to participate in society, by adapting all the necessary
products, systems and objects so they can be used by the greatest number of
people possible, irregardless of their different levels of ability and capacity in
different situations.

Design for all means that a large majority of the services, objects and systems
available in society will be appropriate for almost everyone, whether they are
disabled or not. When design for all is applied systematically, there will only be
a minimum number of people with disabilities who will be unable to use
products and services and who will need more personalised forms of
intervention. Design for all can have a very interesting impact on standardising
markets. It will help reduce production costs, on the one hand, while, on the
other, everyone will be able to benefit from products designed with the intent
of providing greater comfort and security and that will be easier to learn to
use. From a market perspective, logically, then, the most successful products
will be those that are the easiest to use, and that do not present a constant
challenge to our capabilities.

In recent years, a very simple but far-reaching concept has been gaining
ground that proposes that impairment be seen as a difference. This concept
dovetails with the environmental approach that defends diversity as our
heritage. It envisages a society where everybody has a place, where there is
room for all kinds of diversity, and where all human beings can develop their
full potential. These approaches are inspired in the articles in the United
Nations’ Charter for Human Rights.

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Associations of people with disability and the Disability Movement itself have
also modified their ideas as the general paradigms of disability have shifted; at
times they have lead the way to change, while at other, they have adapted to
new ways of thinking. While it is too early to evaluate this process in depth, it
appears that the associations that have most evolved and innovated at a
national and international level have been inspired by the ideas forwarded by
the movement for independent living.

Over the years, instances of collaboration between public and private entities
have provided numerous examples of good practices. The declaration of the
first International Year of Disabled Persons in 1981 upon the initiative of the
United Nations brought in its wake the first European Programme in favour of
persons with disabilities in 1983. The ILO’s Agreement 159 of 1983 made
professional re-adaptation and employment obligatory in the ratifying
countries. It placed the ideas of equal opportunities and equal treatment within
the broader context of labour legislation, going well beyond the context of
professional re-adaptation. Equal treatment is understood not only on a formal
level, but in terms of the adaptation of the work place, considering that true
equality is not reached by merely employing a disabled worker if the
environment, machines, tools or procedures have not been adapted to
accommodate the worker’s characteristics. The Americans with Disabilities Act
(ADA) of 1990 is an example of what legislation can contribute to achieving the
objective of equal opportunity. This piece of legislation clearly defines what
discrimination is and establishes fields of action and a calendar for compliance.
The 1993 Standard Rules on the Equalization of Opportunities for Persons with
Disabilities provides an integrated, holistic focus on the question of disability
and examines requirements for participation, specifying measures for
execution. Under another important aspect, it contemplates the creation of
supervisory mechanisms.

These, and many other milestones, provide necessary instruments to point the
way along the arduous road towards empowering people with disability so they
can exercise their legitimate rights like everyone else.

However, it will take a long time for the more positive models of action to
firmly take hold in society. For people with disability and other minority
groups, such as immigrants, the progressive and open aspects of these
paradigms still co-exist with the prejudices and more closed attitudes
associated with the traditional model.

2.3. Society and the perception of disability

Institutional efforts to promote a more mature awareness of what disability is

have borne little fruit. The same can be said of laws, which, in and of
themselves are not enough to reinforce social change, and alone rarely achieve
what they set out to do. New strategies must be developed to provide positive
and active images of disability, to replace the traditional view that disability is
associated only with pain and incapacity.

34
We tend to form our own images of other people, images which have little to
do with their actual reality or experiences. This mental mechanism hinders
fluid inter-personal relationships, and leads to misunderstandings, prejudice
and rejection. If we complacently accept the image society has traditionally
projected of disability, we tend to think of disability as associated with pain,
solitude, fear and helplessness. Is it any wonder many people shun forming
relationships with people with disability? Who is going to want to get close to
precisely all those things that non-disabled people spend their lives trying to
avoid? We turn our backs on our fears, and rejection and running away
become defensive mechanisms.

Despite the good intentions of people, unfortunate terms are often used to describe persons
who are seen as being different. Words like «cripple» (person whose leg movement is limited)
or «vegetable» (person with limited movement in arms, legs and the muscles of the neck)
reflect the mixture of rejection, lack of knowledge and compassion with which people
consciously or unconsciously refer to the persons with disability.

There are people who suffer from an intellectual disability who are labelled mistakenly as
«imbeciles», «retarded» or «spastics». Persons with mental illnesses often suffer from the
most extreme forms of rejection as a result of the attitudes of others. In fact, a special term
has been coined to describe this extreme rejection which often arises from our fear of
disability and which is projected against people with disability: the term is «stigma».

Susan Parker, Council for of Rehabilitation. International Labour Organisation (ILO).

We should remember here that the concept of social exclusion extends far
beyond economic considerations, and that poverty in social relationships is also
an important part of the lives of people with disability. Privation of social
support, the product of negative social attitudes, manifests itself in the
stigmatisation and abandonment that compound the negative aspects of
disability. It significantly reduces the opportunities of people with disability to
contribute productively to society, and raises the risk that these people will
become trapped within the circle of poverty.

We live in a society that values aesthetics and physical appearance above

ethics and the deeper meaning of things. Our society has erected a false image
of what is “normal”, and promises happiness or unhappiness according to how
closely we match that image. Society itself generates frustration and suffering
based on our physical appearance. Proof of this is the fact that diseases like
anorexia and bulimia have become typical of our times.

But what happens in the case of a person with a “poor” appearance, who
nonetheless has something to offer? Then, we perceive a second element,
usefulness. We can accept someone with a negative appearance provided they
are useful to us. And almost without realising it, we accept and teach that we
should be valued if we have the right appearance or if we can be useful, and
we accept discrimination when, through the passing of time or for other
reasons, a person no longer fulfils either of these two circumstances.

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Research has shown that society at large knows little about disability and
disabled people. The few aspects that we are aware of tend to have a more
negative and selfish expression than a positive one. It is, therefore, necessary
to place the emphasis on the abilities of people with disability rather on what
they are unable to do.

This society, which shies away from contemplating important aspects of life
such as solitude, pain and discrimination, which uses language as a kind of
buffer, which endeavours to promote the “politically correct”, is avoiding
holding very necessary debates. What strange process leads our politicians to
publicly condemn rejection of, and discrimination against people with disability,
and yet allows the persistence of environments, built facilities and systems
that only emphasise this discrimination? What makes them take on values that
favour one race or aesthetic quality over another, or support actions that
conflict with the laws they themselves have created?

We must begin to seek and value the essence of the person, the only element
that will withstand scrutiny both in disabled and abled people, in people with or
without an “acceptable” appearance, of a given race or another. Only then can
we correct the distortion in society's perception of people with disability and of
other minority groups. Laws promoting and prohibiting certain forms of
behaviour are a fundamental element, but they are not sufficient to fight
against exclusion and modify attitudes firmly rooted in social behaviour.
Parallel interventions are required to create synergies that will help change the
attitudes and behaviour patterns that stand in the way of the integration of
minorities into mainstream society.

Once we accept that disability arises from the interaction between personal
circumstances and social factors, such as the greater or lesser accessibility of
appropriate technical aids, the problems associated with disability can only be
addressed by overcoming the social disadvantages affecting people with
disability. A tool conceived to achieve this goal is "positive discrimination”,
whose transfer to national and international legislation has given mixed results
over the last three decades. The aim of positive action is to ensure substantial,
and not only formal, equal opportunities for the members of the different
groups that are victims of social disadvantages. Positive action involves the
elimination of barriers, impediments, obstacles or any other circumstances that
limit or restrict these collectives’ access to equal opportunities.

In its importance, the agenda of discrimination does not cover all the aspects which prevent
people with disability from fully enjoying their human rights. It is an indispensable tool, but it
should be frankly accepted that although effective legislation may open doors, it cannot help
the people to go through these doors if other requirements are not resolved. In other words,
concern for formal freedom must be shown in the necessary means for exercising this
freedom. We should not forget the importance of obtaining economic, social and cultural
rights for the people with disability. And I am not referring to social policies which put the
people with disability into cages of gold with passive attention as was the case in the past.
No. I am referring to a social policy which endeavours to provide support to truly maximise

36
 formal freedom.

Gerard Quinn, National University of Ireland

Ensuring equal opportunities for people with disability means providing them
with the means to lead a full and dignified life, where they will have complete
access to cultural and recreational activities and enjoy all the benefits of the
information society. It means creating an accessible space where we can all
live together, and redefine our concept of disability through mutual awareness.

2.4. Human Development and disability

To make sweeping statements about the expectations of people with disability

would be pretentious, and for various reasons. The first is the enormous
heterogeneity of disabilities themselves which elicits a vast range of social
responses and attitudes that make it virtually impossible to speak of a single
group. Society reacts differently to a person with a physical impairment than to
a person with an intellectual impairment, not to mention the most extreme
case of people suffering from mental illness.

Secondly, the circumstances surrounding disability differ vastly from one

person to another, depending on her socio-economic and cultural development.
This, in turn, will be greatly influenced by the culture of the place where the
person lives. Because of these factors, the problem of disability is a relative
one: It depends, first of all, on socio-economic and cultural realities and,
secondly, on the technical means available to compensate for impairment.
Over time, obstacles change, and often when one is overcome, another is
detected; they become confused and it is difficult to know how to deal with
them separately, making it necessary to keep our guard up at all times and be
ever vigilant to detect new factors of isolation.

The development and implementation of the new information and

communications technologies is a perfect case in point. Over the last twenty
years, strides in communications and computer sciences have led to synergies
between these two fields, making available solutions and services that are
changing the lives of millions of people throughout the world. Nonetheless,
these advances have not always been applied to fields like physical
accessibility, crucial in enhancing the level of social inclusion of people with
disability. Instead, we are faced now with new forms of discrimination and
inaccessibility, and the threat of exclusion from the information society hovers
over all those who do not conform to a single pattern.

Technological development is, therefore, an ambivalent gift. On the one hand,

it provides enormous possibilities for improving the daily lives of people with
special needs by providing innovative support services. New technologies hold
the great potential of helping to compensate for impairments and providing
alternative capacities. And yet, a bi-product of these advances has been the

37
appearance of new, previously unknown barriers that are threatening to leave
behind all those who do not adapt to their requirements.

We firmly hold that there is no reason to resign ourselves to accepting new

barriers with each technological advance. We further believe that these
barriers are not an intrinsic bi-product of technology, but rather of social
attitudes and practices. Data on the subject seem to corroborate that although
there is a perceptible change in the way society is approaching the
phenomenon of disability, negative attitudes and images are still all too
prevalent. The idea that fighting for the rights of people with disability is
fighting for a better and more respectful society is an ideal that has yet to take
firm hold in society at large. A feeling of confrontation still persists, and rather
than thinking about what we can all achieve together, we tend to see
differences between us as obstacles. Far from impeding cooperation, we must
remember that diversity enriches social interactions.

Various authors, including Joshua Malinga, world chairman of Disabled Peoples'

International, and Soledad Cisternas, lawyer and director of the Legal
Programme on Disability in Chile, share the opinion that democracy is not
possible while there are people dying of hunger, while exclusion prevails and
while there are people who are barred from such basic things as education, or
even access to the general transport system. They believe that there can be no
democracy when barriers of all kinds diminish the possibilities of social
participation and integration, or set too high a price on achieving these goals.

There are many myths that limit progress of people with disabilities. Several of
the most prevalent myths are: People with disabilities are not capable of leading full and
productive lives which contribute to the country. This is the myth o f helplessness.
Second, churches or private philanthropy can and should handle the problem. This is the
charity myth. Third, countries at a difficult stage of economic development cannot afford
to deal with disability issues. This is the myth that people with disabilities must be given
a low priority.

Sid Wolinsky, Disability Rights Advocates. California (USA).

How can we explain a world like ours? And if it is really so, what can we do to
change it? We must strive to understand these issues and begin to lay the
foundations for new forms of relations.

Another prevalent attitude seems to distinguish between mild and severe

disabilities when considering the rights of people with disability. There are even
people with a certain level of academic training who do not fully accept that
seriously disabled people are able to do any productive work with any level of
quality.

As with all myths, these persist because people suspect they may hold a tiny
grain of truth. In fact, even when misguided, these arguments are often put
forward in all sincerity. To counter this process that undermines the potential
of people with disability, it is very important for leaders in the disability

38
movement to visit other countries to see for themselves what achievements
are possible.

These ideas must be used to inspire a global process that generates a

universal value system that will call for technical advances to be placed at the
service of integration for all. Under this system the ideas of diversity and
equality should be seen as forming a necessary binomial in all aspects of life.
We are beginning to understand that the ills of society do not reside so much
in technical development but in interpersonal relationships, that is, in the way
we treat each other.

A society’s values are reflected in its rules and laws and in the services it
renders its citizens. A society that discriminates against, or excludes persons
with disabilities or other groups at risk, clearly shows that it values these
people less. A society that takes into account the needs of these groups shows
that it is a society based on decency that understands that providing
opportunities for all its members contributes to social quality.

There is no doubt that progress in telecommunications and, more specifically,

the Internet have given minority groups a showcase to make their problems
more visible on this world wide screen, providing a forum to denounce
discrimination and draw attention to the values of equality, respect and
inclusion.

We can visualise the process of inclusive globalisation as a natural consequence of the

evolution of humanity towards technological progress. During this process, a new concept has
been brought to light, the human family. It is a concept which contains relevant ethical
implications, provided that, in using the idea of the family, we are thinking of links and ties,
fraternity and solidarity and, why not say it, human love. A family should be aware of the
reality and needs of each and every one of its members, and it should also be concerned with
promoting each of its members by creating the appropriate environments.

Each member of this large family has the same rights, rights which do not lose their force as a
result of the imperfect actions of a some of its members, in other words, society in general.
The promotion and defence of human rights is a central question for this large family, and it
finds itself now at the point where it should place the rights of minority groups at the same
height as those rights which are traditionally recognised by doctrine.

María Soledad Cisternas Reyes, Lawyer and Political Analyst. Director of the Legal Programme
on Disability in the Diego Portales University, Santiago (Chile)

Under the auspices of its Development Programme, The United Nations has
endeavoured to gauge the state of human development throughout the world,
presenting its findings in the Human Development Report 2000. The indicators
of development chosen were quality of human life and well-being, with the
understanding that if well-being encompasses living with substantial liberties,
human development is integrally linked to strengthening capacities that
broaden the range of things that a person might be, or might do with his or her
life. The index of human development incorporates very elementary aspects of

39
quality of life, such as "living a long and healthy life, being well informed and
enjoying a dignified standard of living...”. These aspects are tied to the concept
of collective rights which include the rights of the different minority groups.

The United Nation’s report, nonetheless, recognises that overall advances in

human development are not always accompanied by progress in human rights.
An analysis that concentrates solely on the aspect of human development may
mask the vulnerability of certain individuals or groups within society. For this
reason, when identifying priorities for action, the Human Development Report
states that the "objective of this new century should be that all people might
enjoy all rights in all countries”.

We believe it would be very useful to include disability among the indicators of

human development, as this would provide a snapshot of a significant group of
people whose reality continues to be “invisible”. It is paradoxical that the index
of human development has omitted indicators related to disability, since the
United Nations has repeatedly declared that disability is a human rights issue,
and estimates that 10% of the world's population is disabled.

If there is to be a revolution in the human rights of people with disability,

certain fundamental values will have to be taken seriously and applied to the
benefit of all citizens. Referring to human rights may seem lofty and
theoretical, but we would feel these issues much closer to home if we were to
suddenly find that we could not exercise our right to an education, to enter a
public building, to use public transport, to have a private life or to take our
own decisions. These are violations people with disability face day after day.

Human rights fundamentally exist to help achieve human dignity. The shift in
the disability paradigm away from the medical assistance model towards the
social model based on rights has changed the way people are considered, from
object to subject. The idea that people with disabilities are a problem is giving
way to the idea that they have rights and that their problems generally arise
from their interaction with their surroundings. The change towards a social
model based on rights has shifted the focus away from trying to change the
person with a disability, to adapting society’s response to his needs.

The United Nations Organization spoke for the first time of human rights in
relation with people with disability in 1975, when it promoted the Declaration
on the Rights of Disabled Persons. Later, in the ‘80’s it launched the World
Programme of Action concerning Disabled Persons. The approval of the
Standard Rules on the Equalization of Opportunities for Persons with
Disabilities in 1993 was a further advance. Two important aspects of the Rules
are that they incorporate a supervisory mechanism and designate a Special
Speaker responsible for overseeing their application. Although people with
disability are far from exercising their full rights today, a giant step has been
taken in the right direction. While only a short time ago, people with disability
considered themselves the victims of an unfair situation in which they felt
helpless, today, we have begun to consider this situation a violation of their

40
human rights against which they can now take legal action.

There is a close relationship between the development of human dignity and

the defence of diversity and social integration:

The concept of dignity involves the notions of integrity, decorum, honour and
excellence, all of which are severely deteriorated when a human being or
group of people see that their rights are threatened or restricted. Violations of
this nature give rise to erga omnes obligations, in virtue of which every
member of society, from her own particular position or role, must help to re-
establish these rights. The dignity of the social mass can only be measured by
the way it respects and protects the dignity of all of society’s members. To put
it another way, we cannot speak of a society founded on human dignity if, at
its core, it tolerates the violation of the rights of certain individuals or groups.

By championing this concept, people with disability are slowly contributing to

the development of human dignity on an individual and social level. Slowly yet
steadily, society is beginning to seek solutions to combat the various
manifestation of discrimination on the grounds of disability: the dearth of
educational opportunities and openings in the labour market, the lack of access
to information, barriers in the physical environment and in communications,
the lack of access to culture, transport and sports, the barriers to participation
in public and political life and the absence of people with disability in the
decision-making process, to name but a few areas where discrimination is
patent. This discrimination is further compounded by the absolute invisibility of
the sector, as has already been pointed out. Evidently the timid, yet growing
public awareness of disability we are witnessing today is contributing to the
development of human dignity, and is slowly forging societies that pay closer
attention to the quality of the relationships between their members. We must
work hard to internationalise these concepts and make them emotionally
acceptable, if we are to truly give value to diversity and advance towards a
society that is more cohesive and richer in content.

A society based on decency is a one whose institutions do not humiliate the

persons under its authority, and where its members do not humiliate each
other. Along the road towards such a society, it is first necessary to eradicate
cruelty, and then humiliation. In a society which is not decent, a society which
tolerates the privation of freedom and equality, humiliation is the bi-product of
a split between first and second class citizens.

If it has a sense of decency, a society will strive to ensure that all its members,
including people with disability, lead dignified lives. Such a society will
eliminate barriers and make sure that no one is forced to renounce culture,
recreation or the services of the information society. It will encourage all of its
citizens to exercise their right to active participation. A society based on
decency will redefine the concept of disability, and will take the measures
needed to guarantee equality between all its members. By enforcing the
human rights of groups at risk of exclusion, a society creates a place for

41
everyone, fostering each person’s participation within the community. But
before this can happen, it needs to articulate adequate control mechanisms to
guarantee the dignified treatment of all human beings.

2.5. Equality and participation in an inclusive society

Through the definition of their needs on these pages, we have gained some
insight into the expectations of people with disability. These can be summed up
simply as the desire to participate in society under conditions of equality.

People with disability want to claim their right to enjoy the opportunities life
offers any individual, on equal footing with their fellow-citizens; they want to
prepare themselves to take part in life by getting a sound education, and
eventually find the employment that will consolidate their social integration.
They wish to take an active part in the life of the community, and when they
stake these claims, they are fully aware that they are not only claiming their
rights, but are willing to take on the civic obligations they entail. People with
disability are fully prepared to contribute to society, accepting that equal
citizenship means equal responsibilities. These aspirations simply express the
desire to be part of the mainstream, which means the full participation of
people with disability in all of society’s economic, social and cultural processes,
within a framework that rests on freedom of choice.

This perspective, which stresses self-determination, integration, equal

treatment and the value of diversity, implies that equal rights, human dignity
and self-esteem must be placed at the heart of any debate about disability.
When this happens, the focus of these debates will move away from the
individual, to focus on his/her surroundings. This new approach springs from
the idea that human diversity is a significant aspect of any society, and that a
policy for opening up spaces for diversity, besides being ethically necessary, is
a positive factor for both society itself and the productive processes of our
economies.

These aspirations justify the demand that all processes for participation be
open to disabled children and students, with special emphasis on education
and training. When we examine the accessibility of these areas today, we see
that the instruments designed to facilitate participation in collective activities,
like transport and communications networks, have excluded people with
disability in the past. This situation must be corrected, and a new evaluation is
being made of the different physical, attitudinal and communications barriers
that prevent the effective participation of people with disability. Society must
become aware that the ultimate consequence of excluding people with
disability is that their talents are wasted. It is, therefore, of the utmost
importance to eliminate these barriers, most particularly in the area of
employment, the most basic stepping stone to full social participation.

Exclusion and discrimination on the grounds of disability violate various

universal human rights, particularly the right to equality. Structural

42
discrimination and exclusion due to disability debilitate the competitiveness of
economic systems and the cohesion of our social systems. Society as a whole
is affected when the talent and potential of people with disability are not
adequately recognised.

Traditionally, the political response to the phenomenon of disability has been to

provide social compensation through charity and benefits, a treatment that
places people with disability at the edge of society. Specialised social services
have also been offered, and while they are well intentioned, they have failed to
promote the integration of people with disability in community life. This
situation is being recognised as clearly unsustainable. The change in our
concept of disability is driven by the recognition that the best way to
encourage human diversity is by creating economic and social processes that
are inspired in the equality of all members of society, and that are open to all.
The fundamental principle of equality, understood as access to equal
opportunities, is currently considered the necessary point of reference for
economic and social structures and the basis for the recognition of the rights of
people with disability.

Finally, the ambitions of people with disability are not limited to seeing their
demands for participation and equality vindicated; they want to help bring
about an inclusive, supportive and fair society for all. They long to overthrow
the double standard that condemns large numbers of individuals to live outside
the reaches of progress, and they claim a more egalitarian distribution of
wealth and opportunities between the different countries and regions of the
world. They know that it will only be in a society that respects the dignity and
the rights of all its members that no one’s expectations will be thwarted.
People with disability are willing to help build this society. To all those who, like
themselves, feel or have felt discrimination they offer the value of their
experience, their strength, their will and their reason.

3. THE REALITY OF DISABILITY AT THE BEGINNING OF THE 21ST

CENTURY

3.1. The concept of disability

Before any solutions can be proposed to deal with a problem, it is important to

first try to define it and attempt to comprehend its magnitude. In the case of
disability, a review of past definitions helps understand how the concept has
developed over time. The United Nations’ “Declaration of the Rights of Disabled
Persons” used the term impaired to refer to “all disabled people who, entirely
or in part, are unable to attend to the needs of a normal individual or social life
as a result of a congenital impairment or impairment of another kind with
regard to their physical or mental faculties”. In its International Classification
of Impairments, Disabilities and Handicaps (ICIDH), the World Health
Organisation (WHO), on the other hand, distinguished between impairment,
disability and handicap. Impairment was understood to mean “the permanent

43
or transitory - psychological, physiological or anatomical - loss of structure or
function”. Disability was “any restriction or impediment in the functioning of an
activity caused by an impairment in form or within the area considered normal
for a human being”. Finally, the term handicap was reserved for “incapacity
causing a disadvantage for a given person, which limits or impedes the
fulfilling of a function which is normal for this person in accordance with his/her
age, sex and social factors”. This definition of handicap is a synthesis of the so-
called "medical model”, in which disability is seen as a problem or defect
inherent to the person, caused by an illness or health problem, and the "social
model", in which disability derives not only from a condition specific to the
person, but from the interaction between the person and his social
surroundings as well.

More recently, the terms disability and the disabled have tended to substitute
handicap and the handicapped, and the latter are falling into disuse because of
their negative connotations. Following this trend, in its new International
Classification of Functioning, Disability and Health (ICF), the WHO adopted the
term disability to include the terms “impairment”, “limitations in activity” (the
“disability” of the ICIDH) and “restrictions in participation” (which in the ICIDH,
was denominated “handicap”).

In most countries the definition of disability makes reference to a value of

functional limitation, usually expressed as a percentage. Thus in Greece, for
example, Act 1.648 of 1986 defines disabled people within the context of
employment as all people aged between 15 and 65 whose possibilities for
professional activity are limited as a result of a chronic physical, mental or
psychological illness or disability, causing impairment greater than 40%, who
are registered with official employment services.

The Persons with Serious Disabilities Act in Germany considers people with
disability people whose capacity of integration in society is limited by the
effects of a physical, mental or psychological situation which is contrary to
what is considered normal. Germans with serious disabilities may, upon
request, receive an identity card, provided they have a minimum disability
level of 50%.

The term “people with disability”, according to the Americans with Disabilities
Act (ADA) in the United States is applied to any person who has a physical or
mental impairment which substantially limits one or more activities.

3.2. Statistical realities at the beginning of the 21st Century

All policies developed by individual states or international or supranational

bodies should be based on a statistical appraisal of the number of people
affected, an exhaustive analysis of the segment of the population involved and
an inventory of the problems of the groups of people for whom the policies are
developed. Since general and specific statistics about disability are very poor
quality, the Human Development Report 2000 of the United Nations

44
Development Programme (UNDP) made important inroads when it called for
major improvements in collecting statistics on human development in the
future. This declaration is particularly significant since the United Nations’
document does not mention among its indicators the subject of disability in
any of its varied aspects.

An indicator we could use to broach the subject of disability from a global

perspective is the Human Poverty Index (HPI), a multi-dimensional
measurement of poverty that includes, in a single index, privation in four basic
areas of human life: a long and healthy life, knowledge, economic provisions
and social inclusion. However, this approach does not give the full picture,
since privation of a long and healthy life, for example, is measured by the
percentage of inhabitants who have been born and who do not expect to live to
the age of 40; privation of knowledge is evaluated by the rate of adult
illiteracy; and privation of economic provisions is measured through the
percentage of the population who have no access to health services or drinking
water, and the percentage of children under the age of five who are
moderately or severely underweight.

There is clearly an imperative need to incorporate indicators and verifiers

which include disability in any evaluation of Human Development at an
international level. It is only with an analysis with this degree of detail that it
will be possible to form an idea of the actual situation of this significant group
of people, to date ignored in this important international analysis. This
oversight only serves to perpetuate the traditional invisibility of the sector.

It is absolutely necessary for some “key indicators” to be drawn up at a European level,

which, accepted by all the Member States, would show the level of social inclusion of people
with disability in comparison with other groups and/or the population which is not disabled,
and which might be used to evaluate the effects of social policies to fight against exclusion
and the vulnerability of the group.

The use of generic or imprecise indicators makes it impossible to perceive people with
disability as a group which is especially vulnerable to the risks of social exclusion. Therefore,
it is necessary to define precise and specific indicators, agreed upon by the organisations of
the sector, which will allow us to evaluate to what extent people with disability participate in
social life under equal conditions with the rest of the population.

A series of key indicators should be developed for areas of priority inclusion and, especially,
access to employment, access to lifelong training and access to the information society.
Establishing 3 or 4 key indicators, accepted by all, for each one of these four areas of social
participation, would provide a flow of manageable information and would provide us with data
for carrying out comparative analyses with the different reference groups.

Carlos Rubén Fernández Gutiérrez. First Executive Vice-President of the ONCE Foundation.
Spain.

Collecting statistical information about the realities of disability is simple

45
enough when considering small groups of the population in specific
geographical areas. However, it becomes far more complicated when we try to
approach a regional, national or supranational scale. For this reason, there are
many statistical data on disability in developed countries, while there are many
fewer on the supranational level, or for developing countries that lack the
structures to collect them. What is more, collecting statistical data on disability
comes up against the taboo of recognising disability, since people
understandably are reluctant to identify themselves with a condition that will
breed social discrimination in numerous societies diversity is not recognised as
a source of social wealth. We cannot forget either that in some cultures the
idea still persists that disability is socially unacceptable (for example, in many
areas of Asia, disability is seen as punishment for a sin committed in a
previous life).

Another problem with statistics on disability is their interpretation. Since no

single concept of disability is universally adhered to, the statistics give different
results within the same geographical area. For example, in the case of Great
Britain, based on the definition of general disability as a “limiting, long-
standing illness", 21% of the population over the age of 16 has a disability
(data from the General Household Survey of 1985). However, if we use the
definition of disability based on limitations when carrying out a series of daily
activities and on conditions of health, only 14% of the British population over
the age of 16 was disabled in 1985.

Before the World Health Organisation drew up the International Classification

of Impairments, Disabilities and Handicaps (ICIDH) in 1980, there were no
internationally comparable statistical systems because the concept of disability
was applied differently in each country. An exception was the Organisation for
Cooperation and Economic Development’s (OECD) early attempt at
standardisation at the end of the seventies, which generated the so-called
“OCED long-term disability list". Both the ICIDH and the ICF have been
designed to overcome this problem by providing uniform definitions to be used
in the collection of data.

One of the principle objectives of the new International Classification of

Functioning, Disability and Health is to use more positive language with the
introduction of terms such as “activity” or “participation”. Another is to include
a broader definition of disability. The new Classification distinguishes between
problems associated with performing specific activities, problems related to the
“body/structure system” (previously called “impairment”) and problems
affecting participation (“handicap”).

In 1988 the United Nations created the Disability Statistics Database (DISTAT),
the fruit of the collaboration between the United Nations Statistics Office
(UNSO) and the Research Institute of the University of Gallaudet. This work
represents the first serious attempt to identify and compile statistical data on
disability in different countries. However, when they began the project, the
research partners found that only 95 countries or geographic areas had

46
statistics for the years 1975 to 1988. The available material was thus used to
compile the first United Nations Disability Statistics Compendium, published in
1990, providing information on 55 countries or geographical areas. Twelve
years later, the database contained 177 national studies from 102 countries,
data which is currently being duly tabulated and analysed by the UNSO.

The United Nations also created the Washington City Group, to promote the
collection of statistical data on disability, and help countries draw up their own
statistics on the subject. Another major objective of the Group, which held its
first meeting in February 2002, is to reinforce the use of statistics when
drawing up policies for disability aimed at achieving full social participation and
improving the quality of life of people with disability.

A recent study by the World Health Organisation estimated that between 7%

and 10% of the world's population, or between 500 and 600 million people,
have some kind of disability. Approximately 80% of these people live in
developing countries, where only 1% and 2% of the population have access to
basic rehabilitation and health services. According to the United Nations
Disability Statistics Compendium the percentage of the population with
disability varies between 0.2% and 20.9% of the population depending on the
country. This discrepancy is obviously due to a lack of homogeneity in criteria
when collecting statistics, rather than to differences from one place to another,
which doubtless do exist in the case of different disabilities, but not in the
proportions suggested by these data.

Recently, Peter Coleridge, author of the estimations made by the World Health
Organisation, suggested that in developing countries 4% of the population has
some kind of disability whereas this percentage increases to 7% in
industrialised countries due to their older demographic structure. The United
Nations Development Programme (UNDP), on the other hand, estimates that
the global percentage of disabled persons is 5.2% of the world’s population.
The UNDP divides the countries of the world into three categories, depending
on three dimensions of human development: longevity, knowledge and living
conditions. Cross references of these data with statistics from the DISTAT
database show that the countries with high human development have a
disabled population of around 9.9%; in countries with medium human
development the figure is around 3.7%; in countries with low human
development, the figure is 1%. Despite differences in the age structure that
explain these discrepancies in part, it is obvious that many disabilities are not
included in the statistics of the less developed countries.

Developed countries

The high life expectancy enjoyed by the population of developed countries

raises the rate of disabilities, since the risk of acquiring a disability increases
with age. The population in these countries has sufficient economic resources
and welfare provisions to guarantee generalised access to scientific and
medical advances to prevent numerous disability-causing illnesses.

47
Furthermore, these same advances mean that people with disability can enjoy
a better quality of life and may have a longer life expectancy compared to
other parts of the world.

In the United States 22.5% of people between the ages of 45 and 54 have
some kind of disability; of these, 13.9% suffer from a severe disability,
although only 3.6% require assistance in order to lead a normal life. According
to data from the United States Census Bureau from 1997, of a total of 267.7
million people, there are 52.6 million North Americans (19.7% of the
population) with some level of disability; of these, 33 million (12.3%) have a
severe disability. In the United States, 3.8% of the population, or 10.1 million
people, require the assistance of another person to perform daily tasks. Similar
percentages have been observed in surveys and studies carried out in other
Western countries.

Only two years ago, the European Union appointed a group of experts to
establish the conceptual unitary bases required to draw up common statistics
among the fifteen Member States. The EU calculates that some 10% of the
European population (approximately 38 million people) have some kind of
disability. Since 1994, there has been a module on disability in the Eurostat
Households Panel survey with standardised data for all the countries in
Western Europe. Data on disabilities have also been provided by the
Eurobarometer nº 54.2 of 2001, which shows that 6 out of every 10 Europeans
know someone with a disability, and that 97% of the population of the fifteen
States feel that something should be done to ensure the full social integration
of people with disability. It is hoped that the European Year of People with
Disabilities in 2003 will provide opportunities to understand better the reality of
people with disability in Europe.

In Spain, the recent survey carried out by the National Institute of Statistics,
the Institute of Migrations and Social Services and the Foundation of the
National Organisation of the Blind in Spain (ONCE) shows that 9% of the
Spanish population (3.5 million people) have some kind of disability. In
Germany there are 6.5 million people who are severely disabled and duly
recognised by the country’s different Administrations; of these, 2.25 million are
between the ages of 15 and 60.

Latin America

In a recent meeting of the Inter-American Development Bank an exhaustive

study was presented on disability in Latin America. The first difficulty in
collecting data in these countries was the variation in methodologies used,
which made it difficult to compare the data from the different sources in the
region. Because of these restrictions, the study is more a collection of national
statistics than an analysis of the reality of the region from an overall
perspective.

The estimated prevalence of disabilities in Latin America reflects a wide

48
spectrum ranging from 1.2% of the population in Colombia to 13.1% of the
population in Peru. In some of these countries there is conflicting information
which makes it difficult to discover the real disabled population: in Colombia,
for example, the National Administrative Department of Statistics
(Departamento Administrativo Nacional de Estadística) calculated in the census
of 1993 that 1.2 % of Colombians have one disability or another. However, the
National Health System (Sistema Nacional de Salud) estimated that the
proportion of the Colombian population with disabilities was 23.8%.

Africa

According to the DISTAT, the percentages of the population with disabilities are
lower in developing countries due to the definitions used for disabilities and
because there are far fewer elderly people. In Africa, the few statistical sources
available give very different ranges of figures. For example, in Ethiopia 18% of
the population under the age of 15 is disabled (according to a national source
for the years 1979-80), whereas in Malawi only 3% of the 1987 census
suffered from a disability, and in South Africa it is estimated that the
percentage of the population with disabilities is 5%.

According to data from the World Health Report, published by the WHO, only 9
of the 53 African countries for which data is available have a life expectancy for
children born in 1999 greater than 50 years. For the first time, this
international organisation has calculated life expectancies for children free from
disabilities born in 1999 based on a new indicator, the Disability Adjusted Life
Expectancy (DALE), which measures the years that the child should live in
"perfect health". The charts of the WHO show that the number of years of life
expectancy in conditions of perfect health which are lost as a result of a
disability is significantly greater in poor countries, due fundamentally to the
structural limitations which have a greater effect on children and youths. In
regions with a higher level of health, 9% of life expectancy is affected by
disability, as opposed to 14% in poor countries.

Only between 1% and 2% of the African population with disabilities, calculated at

approximately 700 million people, have access to attention and rehabilitation services. 80% of
the people with disability in Africa live in rural areas and the majority are women who suffer a
double discrimination or, to put it in other words, a double disability: that of being a woman
and that of being disabled. And it might even be a triple discrimination if we add the fact that
they are black. As we have mentioned before, the majority of disabled people in Africa do not
live for very long, especially if they suffer from a serious disability, because there are no
medical installations, there is nothing much to talk about, there are no wheelchairs or
equipment in those areas of Africa suffering from wars or conflicts nor in Central Africa.

Joshua Malinga, Chairman of the Disabled Peoples' International. Bulawayo (Zimbabwe).

Asia

49
In the Asia-Pacific region there are striking contrasts between the developed
and the developing countries. There are also wide variations between the
estimates of disability given for one country and another. According to the
estimates of the number of disabled people in The Asia-Pacific Region (1993-
2002) over the last decade, 18% of Australians and 19% of New Zealanders
had a disability of one kind or another in 1996.

On the other hand, the number of Chinese people with disabilities was
estimated at 4.9% (1987), and the number of people with disability in India
was estimated as being as low as 1.8% (1981). The lack of infrastructures,
cultural diversity and the use of different definitions mean that in India, in
1991, the National Sample Survey stated that 1.9% of Indians suffered from a
disability that affected one of the following areas: sight, hearing, speech and
mobility; in a different sample for the same year, it was estimated that 3% of
Indians between the ages of 0 y 14 were mentally retarded.

According to the United Nations Economic and Social Commission for the Asia-
Pacific Region, almost two thirds of the people with disability — some 400
million people — in the world live in South and South-East Asia, and most of
these are imprisoned in poverty and suffer from discrimination. For the United
Nations Commission, the impoverished living conditions of the people with
disability in South-East Asia constitute a vicious circle where poverty and
disability are both the cause and consequence of one another: poverty is
generated by disability and many suffer from disabilities as a result of poverty.

3.3. Legal Realities

The Madrid Declaration reaffirmed that people with disability have the same
fundamental rights as the rest of humanity, echoing the first article of the
Universal Declaration of Human Rights. However, before all citizens will be able
to exercise their rights, all the world’s communities and societies must
celebrate the diversity of their populations, and specifically guarantee
measures that will allow everyone to enjoy all the civil, political, social,
economic and cultural rights recognised by the various international
Conventions.

While noticeable progress has been made on this front, the struggle for people
with disability to fully exercise their liberties and rights has yet to be won:
They continue to fight to overcome discrimination, to embrace equality, to free
themselves from poverty and live with dignity, to achieve the freedom they
need to fulfil their potential as human beings, to exchange fear for a sense of
personal security, to overthrow injustice, to gain true freedom of speech,
participation and association and to be free to hold a dignified job without
exploitation.

Diversity is currently seen as one of humanity’s assets; multi-cultural

expressions are valued and human solidarity is prized. These advances
notwithstanding, "...even with the new standards, discrimination and inequality

50
continue to be present in almost all countries in the world."

People are born with certain basic rights, but neither the realisation nor the enjoyment of
these rights is automatic. History shows us how people have had to fight for their rights. The
cornerstone in this fight has always been political activism.

The new debate on human rights places emphasis on the importance of these rights in all
normative areas. The focus of development based on rights is converting human rights into an
integral part of development processes and policies.

The indivisibility of human rights has been accepted as a principle, thus displacing the concept
which reigned during the cold war and which divided human rights into two groups: Civil and
Political Rights and Economic, Social and Cultural Rights. There still exists a latent tension
between some of these rights, for example, there is tension between the universality of
human rights and their specific cultural nature; between national sovereignty and the
supervision of human rights by the international community within individual countries;
between the indivisibility of human rights and the need to establish priorities due to
limitations in resources; between the ratification of international Treaties and their application
at a national level.

Human Development Report 2000. United Nations Development Programme

The 20th Century was marked by social, scientific and economic advances that
raised the average life expectancy. According to the United Nations, the
world’s population reached 6,100 million people midway through the year
2000, and its current growth rate is 1.3%, or 77 million people a year. Over
the last century, people with disability have experienced significant social and
cultural changes, going from being considered passive subjects maintained by
a paternalistic society, to becoming active members of society. The strong
disability movement has been successful to a certain extent in putting disability
and diversity on the economic and social agendas, and this has lead to the
adoption of numerous international resolutions and agreements. Thanks to
technological advances applied in the field of rehabilitation and to the
adaptation of the workplace, people with disability can now make an important
contribution to society’s productive capacity.

From the economic point of view, the traditional separation between

rehabilitation and assistance has proven to be unnecessarily expensive and
unproductive. One the one hand, the services provided by institutions incurred
unnecessary high costs, and on the other, the tendency to isolate people with
disability economically and socially from the rest of the population was
burdensome and counterproductive.

The evolution of the policies of the United Nations and other international
organisations to improve the plight of people with disability has helped shape
the legislative measures that have been applied in many countries. These
policies express, in fact, some of the most advanced points of view in the field.
The legal standards that protect and enforce the rights of people with disability
find their origins in the recognition of human rights, and their legal definition
through the recognition of fundamental rights. As a result of these advances,
more value has been given to social and economic rights and, most

51
particularly, to the right to work, to social protection in situations of need and
to the right to a worthy dwelling. In many countries, these rights are protected
by specific instruments to facilitate the integration of members of
underprivileged groups.

A first set of standards for the protection of people with disability is enshrined
in the international documents that recognise the equal rights of all members
of society. Of particular note at an international level are The Universal
Declaration of Human Rights of 1948 and the International Pact of Economic,
Social and Cultural Rights of 1966. At a European level the European Social
Charter of 1961, the Treaty of the European Union, and the Charter of
Fundamental Rights of the European Union of 2000 have been particularly
useful. The importance of these texts stems from the general objectives they
establish; these have, in turn, served as the basis for other texts such as
Resolutions, Recommendations, Agreements and Reports, that address the
subject of disability in more detail.

It was during the last quarter of the 20th Century that the United Nations began
to direct more attention to the plight of people with disability. Through the
Declaration on the Rights of Disabled Persons of 1975, and the preceding
Declaration on the Rights of Mentally Retarded Persons of 1971, the Member
States took on the commitment to take measures to help improve the standard
of living of citizens with disability. Policies included promoting full employment
and the necessary conditions for progress and development in economic and
social affairs. Thanks to others aimed at protecting the war-wounded and the
victims of labour-related accidents, the international community seems to be
becoming aware that it must do more to safeguard the rights of people with
disability.

The great value of the first of the Declarations mentioned above is that it
recognises that people with disability “have the right to enjoy the measures
destined to allow them to achieve as much autonomy as possible” and the
right to “medical, psychological and functional attention..., education, training
and professional re-adaptation..., to aids, advice and placement services and
other services which will ensure...their social integration or re-integration”.
Perhaps it was during the work on these documents that the importance of the
organisations representing people with disability was recognised for the first
time: these organisations were extensively consulted during the process, and
were able to make substantial contributions to the documents developing the
rights of disabled persons. But the great quantitative leap in the intervention of
the United Nations came with the General Assembly’s proclamation of 1981 as
the first International Year of Disabled Persons. The slogan for the Year was
“Full Participation and Equality”, and during the proceedings, the period
1983/1992 was proclaimed the United Nations Decade of Disabled Persons.
These initiatives laid the groundwork for the adoption of measures of all kinds
to promote the social integration of people with disability.

Among these measures was the United Nations’ own World Programme of

52
Action Concerning Disabled Persons whose objective was “promoting efficient
measures for the prevention of disability, promotion of rehabilitation and the
realisation of the objectives of the full participation of people with disability in
social life and for the development of equality”, which “means opportunities
equal to those of the rest of the population and an equal participation in the
improvements in the conditions of life...”. This important programme is a
milestone in the role of the United Nations in its fight for a fairer world for
people with disability. In its Article 21, the Programme recognises that
rehabilitation measures by themselves are not sufficient, as it is often the
person’s environment that determines the impact of a disability. This article
states that often a disabled person’s environment denies her the same
opportunities as the rest of the population in such fundamental aspects of life
as education, employment and housing. Numerous other recommendations
were presented during this period with the aim of facilitating the execution of
the World Action Programme. Of major importance among these was the
Resolution that approved the Standard Rules on the Equalisation of
Opportunities for Persons with Disabilities in 1993.

Any policy for social integration must include employment as a key element.
This has been widely recognised by international organisations, especially the
International Labour Organisation (ILO) which has worked to develop legal
instruments to protect the right to employment.

Some of the instruments passed by the ILO are general in their overall scope,
but include people with disability in their provisions. This is the case of
Convention nº 111 and Recommendation nº 111 on discrimination in
employment and occupation, both approved in 1958, in which discrimination in
employment is prohibited on the grounds, among others, of disability. On
occasions, the ILO’s instruments constitute legal standards, although more
frequently, they provide sets of guidelines that can be used by individuals and
groups to fully develop opportunities in obtaining employment, and achieving
acceptable working conditions. Convention 111 falls under the first category. It
is a legal standard which is directly applicable in the States which ratified and
published the agreement. It is interesting to note that it is not only aimed at
protecting against discrimination, but also promotes measures to directly
counter the effects of discrimination. It legitimises the use of these measures
and considers them non-discriminatory when they are aimed at overcoming a
disadvantage or disability.

The ILO’s Convention 159 concerning Vocational Rehabilitation and

Employment (Disabled Persons), of 22 June 1983, and the accompanying
Vocational Rehabilitation and Employment (Disabled Persons)
Recommendation, 1983 (No. 168), contemplate a series of positive measures
which, along the lines of Convention 111, cannot be considered discriminatory
with respect to workers who are not disabled (article 4 of Convention 159). The
philosophy behind these instruments is that the resources available to people
with disability should be, as far as possible, those normally available to the rest
of the population. While this principle calls for mainstreaming issues related to

53
disability, it does not exclude attention to the special needs of the disabled
through specific services or programmes.

The Council of Europe has also addressed the question of disability. After
approving the Partial Agreement on Social Affairs and Public Health, the
Council set up a Committee to examine and promote the professional re-
adaptation and re-integration of people with disability, and these initiatives
culminated in the European Social Charter of 1961. Article 15 of the Charter
requires the Member States to adopt measures to provide professional training
and professional and social re-adaptation through employment, either in the
mainstream or the protected labour markets, by offering incentives to
employers. The new focus inspired the initiatives of the Council of Europe,
brought together in Recommendation R92-6 concerning "A coherent policy for
the rehabilitation of people with disabilities " (adopted by the Committee of
Ministers of the Council of Europe on 9 April 1992). These are similar to those
laid down in the Standard Rules of the United Nations. From an initial approach
centred on physical and therapeutic re-adaptation, where the medical field
played a crucial role, more global aspects began to be considered. These were
aimed at the social integration of people with disability at all levels. Yet, the
far-reaching aim of these efforts does not stop at ensuring that people with
disability enjoy all their rights and freedoms; it goes further, by placing people
with disability at the helm of their own re-adaptation, and claiming recognition
of their right to be different.

Although the major thrust of the European Union has been economic
integration, its creation has helped social policy advance steadily. The Treaty
of Amsterdam introduced an explicit provision into the Treaty of the European
Union in its Article 13, addressing the fight against discrimination in various
fields, among others, in the area of disability.

The new Treaty of the European Union requires an annual examination of the
situation of employment and requires the transposition of directives into
national policies. The European Strategy for Employment, established in the
current Treaty of the European Union, states that the Common Directives for
Employment, approved by the Council, will be the general framework for co-
ordinating the employment policies of the Member States, which must write
and apply National Plans of Action in favour of Employment, supported by the
Structural Funds. The four cornerstones of the European Strategy for
Employment are:

a)To improve the capacity of citizens to join to labour market,

especially with regard to the long-term unemployed and youths.

b)To develop the entrepreneurial spirit.

c)To encourage the capacity of adaptation in both workers and

companies.

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 d)To reinforce policies for equal opportunities.

In 1996, the European Commission issued a Communication entitled “Equality

of opportunity for people with disabilities - A New European Community
Disability Strategy”, which was approved by the Council by means of a
Resolution in December 1996. This document concentrates primarily on
eliminating the environmental barriers that constitute obstacles to the full
social participation of people with disability in the labour market, rather than
on the functional limitations of people with disability themselves. According to
the Eurostat Household Panel Survey of 1996, the probability of having a job
or business is 62% for Europeans aged between 16 and 64, but only 46% for
persons with a mild disability, and 24% for the seriously disabled.

In the year 2000, the Commission approved the Communication “Towards a

Barrier-Free Europe for People with Disabilities”, and within the document’s
non-discrimination package, it adopted a Directive that calls for setting up a
general framework for equality in employment and occupation. The Directive is
an important advance in the fight for equal opportunities for people with
disability. It will oblige the Member States to establish an adequate framework,
not only to protect people with disability against direct discrimination, but also
to implement positive action against indirect discrimination of people with
disability. It is a Directive that will surely be far-reaching in its scope as, once
it is transposed into national legislation, it will make it compulsory for
companies to adapt the workplace so that workers with disability can carry out
their tasks normally.

In America, the Organization of American States approved the Inter-American

Convention on the Elimination of all forms of Discrimination against Persons
with Disabilities on 7th June 1999. Twelve countries had ratified this convention
at the time of this report.

In the 21st Century, people with disability will have recourse to an

International Agreement for the protection and promotion of the rights and
dignity of disabled persons under the auspices of the United Nations, whose
General Assembly approved a resolution in this sense, on 30 th November 2001.
This resolution was presented by the Government of Mexico, with the support
of 24 countries. In order to draw up this agreement, it was decided to establish
an open ad hoc Committee in which all the Member States and observers of
the United Nations could participate to promote the preparatory work for the
Agreement.

3.4. National Policies and people with disability

The majority of national policies on disability are based on the World Action
Programme and the Standard Rules of the United Nations. Industrialised
countries usually have more advanced policies on disability than developing
nations, although in both cases the traditional services and strategies for
assistance are being complemented by non-discrimination legislation and

55
legislation to guarantee equal opportunities.

For example, in the United States, where the disabled population registers an
unemployment rate of 70%, the ADA, Americans with Disabilities Act, was
drawn up. This piece of legislation has made major advances in the area of
non-discrimination. Its intention is to provide guarantees for disabled persons
in economic and social areas by explicitly protecting their right to employment,
access to public services and to telecommunications. In order to avoid
discriminatory situations in access to the opportunities offered by new
technologies, the President of the United States presented the Freedom
Initiative at the beginning of 2001, as a tool to facilitate social and labour
integration in a new labour market characterised by the adoption of new
technologies.

There is a similar law in Australia that ensures that people with disability have
the same rights, options and opportunities as the rest of the Australian
population, including the right to take part in the activities of the community
and the right to dignified employment. This principle states that all
discrimination against people with disability is illegal, as laid down in the
Disability Discrimination Act of 1993. Great Britain passed a law in 1995 that
makes it illegal to discriminate against people with disability in any way with
regard to employment, the provision of goods and services and the purchase
and rental of lands or properties. British companies and service providers must
take reasonable steps to ensure that there is no discrimination against people
with disability.

In Denmark, the principle of equal treatment for people with disability was
approved by the Danish Parliament in 1993, enjoining all public and private
authorities and companies to respect this principle.

Developing countries have the furthest way still to go. Of the 16 countries with
low income levels that replied to the United Nations survey between 1995 and
1996, 75% stated that they had policies in favour of people with disability,
compared to 94.49% of the 39 countries with medium incomes, and 81.7% of
the 24 countries with high incomes. Despite their limited resources and recent
political histories, these countries have adopted the most advanced aspects of
policies for people with disability, taking into account the recommendations of
the UN in its World Action Plan, the Standard Rules and the recommendations
of the World Health Organisation and the ILO.

However, there are many cases where these relative advances in the social
integration of people with disability have not become reality. In 2001, the
Internet newspaper Disability World published a report which denounced the
low level of access of the 60 million Chinese people with disability to university
education. The dozens of universities in Beijing have only admitted 236
students with disability in the last five years and, according to the reporter
Miriam Donohoe, in Beijing thousands of Chinese students must submit to a
medical examination prior to University entrance. The Ministry of Education has

56
published directives which indicate the standards for physical conditions
required in all candidates for further education. These provisions establish that
people with even relatively unimportant impairments are barred from studying
certain subjects. For example, people whose legs have a difference in length of
5 centimetres or whose backbone has a curve of more than 4 centimetres
cannot study marine sciences, agriculture, forensic medicine, civil engineering
or geology.

According to the Report “Victim Assistance” drawn up by Handicap

International in 2000 on the damage caused by anti-personal mines, only 1
out of the 69, fundamentally developing, nations where there had been
incidents linked to this kind of weapon, has explicit policies or legislation for
people with disability. Some countries include articles in their Constitutions to
protect people with disability from different kinds of discrimination, but they
have no specific legislation, or have insufficient means to enforce these
articles. Other countries have recourse in common laws with specific
amendments to guarantee equal opportunities.

3.5. Social changes and disability

The social and demographic changes that swept the 20th century gave rise to
new ways to structure and organise society. The role of women has been
redefined, masses of people have migrated from farming communities to cities,
our life expectancy is longer and we enjoy better quality of life thanks to
medical and technological advances.

Towards the end of the 19th century, women began to assume a new role in
many aspects of society, and brought down the barriers that had kept them
out of public life, from political spheres, to the labour market. This process,
however, was far from homogeneous throughout the world, and the cultural
and religious characteristics of different societies dictated the rate at which
women conquered new frontiers. Within the European Union, for example,
there are still more women in the labour market in Scandinavia than in the
Mediterranean countries. A comparison of the role of women in developed and
developing countries reveals even more striking differences. Men and women
play similar roles in public life fundamentally in economically developed
countries, whereas in developing countries, the role of women in public
spheres continues to be secondary.

There are approximately 300 million women in the world who suffer from some
kind of physical or mental disability. In developing countries three quarters of
the people with disability are women, and between 65% and 70% of them live
in rural areas. Although women with disability account for 10% of all the
women in the world, the health and rights of this collective are frequently
overlooked altogether. Women with disability are discriminated against on two
accounts: first, because they are women, and find themselves barred from
many jobs, or are the victims of unequal treatment in other areas; second,
because they are disabled. Furthermore, it is women – with disability or not -

57
who are expected to care for dependent members of the family, thus providing
essential social services that should be the responsibility of the State.

Women with disability should be able to enjoy all human rights and these
should be guaranteed by international laws and customs. However, in many
cases the reproductive rights of women with disability, the right to equality and
to non-discrimination, the right to marry and to found a family and the right to
physical integrity are not respected by national legislation. The personal
development of women with disability can be thwarted in the face of this lack
of guarantees.

Medical advances and improvements in assistance have increased the life

expectancy of the population. This has contributed to the ageing of society as a
whole, while improving the survival rate of people with disability who have
generally had a lower life expectancy and worse quality of life.

As was recognised by the governments meeting in the Second World Assembly

on Ageing in Madrid, Spain, in May 2002, the world is experiencing an
unprecedented demographic transformation. In the first half of the 21st
Century, the number of persons over the age of 60 will increase by more than
600 million to almost 2,000 million, and it is estimated that the percentage of
persons aged 60 or more will more than double, going from 10% to 21% of the
general population. This increase will be greater and quicker in developed
countries, where it is expected that the elderly population will multiply fourfold
in the next 50 years. According to the 1995 report of the United Nations
Population Fund, in the early ‘50’s, in developed countries couples were having
an average of 2.8 children; the average is currently 1.6. In less advanced
regions, this rate has decreased from 6.2 children per woman in 1950 to a little
below 3 at present and, according to estimates, the figure will be reduced to
less than 2.1 by 2045. In the last 50 years, the sharpest fall in the birth rate
has occurred in Latin America (from 5.9 to 2.7) and Asia (from 5.9 to 2.6). The
decline has been less rapid in North Africa and the Middle East (from 6.6 to
3.5), and much slower in Sub-Saharan Africa (from 6.5 to 5.5).

This demographic transformation means that our societies have to face the
challenge of providing increasing opportunities for the general public, but
especially for the elderly, if they are to get the most out of their abilities and
participate fully in all social aspects throughout life. In developed countries, the
elderly share many needs, and have many similarities with people with
disability, and we must bear in mind that in these countries the ageing of the
disabled population means that new, specific requirements will appear, such as
early retirement, tutelage of the mentally disabled and the need to care for
more dependent members of society.

All of these changes have coincided with an intense process of urbanisation.

The percentage of persons who live in urban areas increased dramatically in
the second half of the 20th Century, particularly in less developed regions. It is
estimated that by 2005 more than half of the world's population will live in

58
urban areas; in less developed regions this threshold is expected to be met
before 2015. This process of urbanisation is, in many areas, taking place
without any kind of planning and is characterised by a lack of structures and
resources.

In developed countries, the majority of the disabled population live in urban

areas with adequate access to social aid services, with appropriate economic
levels and significant levels of accessibility to their surroundings. In less
developed regions, on the other hand, the majority of people with disability live
in places where access to social services and rehabilitation is difficult, where
there is a lack of infrastructures, where the urban areas are not subject to
controlled planning and where no attention whatsoever is given to ideas like
“design for all”.

59
 Chapter Three
THE OPPORTUNITIES THAT EXIST AND THAT CAN BE
CREATED

Access to education, employment, social, health and cultural

opportunities, transport and information is, among other things, a
basic right that many people with disability are unable to exercise,
or cannot exercise under the same conditions as other people.
Disability is, therefore, a question of human rights, and non-
discrimination and positive action are key elements to guarantee
these rights.

Slowly but irreversibly, societies have found ways to combat the

many forms of discrimination suffered by people with disability. This
Report examines the different areas relevant to the participation of
people with disability in society (education, employment, security
and social protection, technological change and medical and
scientific advances, leisure and culture, and active participation in
citizenship and development), showing solutions and instruments
that are already available in some of our societies and that could be
widely disseminated through the right policies and programmes.

1. DISABILITY IN THE PERSPECTIVE OF HUMAN RIGHTS

1.1. The rights of minority groups

While the globalisation process is contributing to strengthening the principles

upon which inclusive democracies are founded, it is also exposing the fact that
majority rule often overlooks the rights of minority groups. Today we have
before us a challenge, which also presents an invaluable opportunity:
Extending to all social minorities the same rights that the majority has
enjoyed. The rights of the majority have traditionally been more readily
recognised by doctrine, so the task before us is to develop a theory of human
rights capable of including those aspects that are specific to each minority
group. This may mean compiling a catalogue of the rights of each group,
detailing their specific characteristics, because, while all groups of people share
points in common, certain aspects peculiar to each one will require greater
theoretical and practical precision.

If this goal is to be reached, all of society’s members, as one human family,

will have to make a concerted effort to uphold the rights of minorities,
including people with disability. For this to be effective, formal and material
protection will have to be specifically granted minority groups.

60
Today our societies have become aware of particularly vulnerable groups--
women, children, ethnic and racial minorities--and have made their defence a
priority. However, it is striking to see that in many countries ethnic and racial
minorities number far fewer than people with disability, yet their influence on
public opinion, policies and the assignation of resources is far greater than that
of the disabled. This can be explained by the work of a well-synchronised
international movement operating through different worldwide networks that
has been successful in promoting the rights of these minority groups.

1.2. Non-discrimination and positive action, the keys to guarantee

the rights of people with disability

Many people with disability are unable to exercise their basic human rights
when they are denied access to education, employment, healthcare, culture,
transport and information, among other things. It is precisely because they
cannot exercise these rights to the same extent as other people that disability
is now recognised as a human rights concern.

In two of its articles in the section entitled “Equality”, the new Charter of
Fundamental Human Rights of the European Union makes specific mention of
people with disability: In the first, it prohibits discrimination, and in the
second, it recognises the right of persons with disabilities to enjoy measures
that favour their social integration.

In the framework of the United Nations, the human rights aspects of disability
have also been consolidated. A current proposal is underway to draft and pass
a United Nations Convention covering the rights of the almost 600 million
people with disability in the world.

The call for a specific Convention concerning the rights of people with disability
constitutes the most significant international initiative in the disability sector to
date. The creation of this instrument would advance the legal, political and
conceptual framework for the field of disability, combining the elements of
non-discrimination with positive action. When this work is successfully
completed, it will constitute a veritable landmark in the history of people with
disability and it will be especially relevant for people with disability in
developing countries.

In its final report of August 2002, the Ad Hoc Committee responsible for
analysing the proposals concerning the creation of the Convention recognised
that the initiative would be a substantial step towards allowing people with
disability to fully and effectively exercise all of their human rights.

A specific Convention is important for the following reasons:

− A Convention would draw the world’s attention to the fact that people
with disability possess the same human rights as the rest of society.
Although the disabled are not usually formally excluded from generally

61
 accepted human rights, in practice in many countries, rights do not
seem to apply to people with disability, or at least, to certain groups of
people with disability.

− A Convention would provide the necessary tools for people with disability
to access the complete range of human rights: civil, political, economic,
cultural and social rights. Currently a series of barriers prevent access to
these rights, and only a Convention that takes this reality into account
will be able to stop the systematic violation of these rights. An example
of how human rights are violated can be seen in the right to vote. It is
not only a question of eliminating legislation that prohibits people with
disability from exercising this most fundamental of human rights, but
also of making all the necessary changes in the electoral processes so
that persons with disabilities can exercise this right under the same
conditions of privacy as other voters. Each one of the human rights will,
therefore, have to be analysed from the viewpoint of a person with a
disability, identifying each of the barriers for the different groups of
disabled people so that they will be able to exercise these rights in the
same way as the rest of society. This will means promoting measures to
eliminate the barriers which prevent this from happening today.

− A Convention would provide a special mechanism for supervising and

monitoring the effective implementation of its content. This would
require periodic reports from the Member States, and a review of
complaints from individuals and NGOs concerning the violation of human
rights.

− A Convention would significantly strengthen the role of the Non-

Governmental Organisations representing people with disability in
ensuring that their members are able to exercise their rights.

This Convention would provide a formidable instrument to change the image

society holds of people with disability. People with disability must be seen as
holders of the same human rights as everyone else, and society must make
whatever changes are necessary for them to be able to enjoy these rights
under the same conditions as their fellow-citizens. It is not a question of
charity; it is a question of human rights.

With regard to this last point, a proposal has been made to grant people with
disability a specific right: free access to rehabilitating technologies. Given that
highly efficient technological aids would lead to greater social integration, the
importance of this human right and its promotion in all areas would help
provide access to these technologies to all disabled persons for whom they are
out of reach.

In many countries, full or partial financing is restricted to a limited catalogue of

technical aids for rehabilitation, and technologies of the most recent
generations are usually not covered because of budgetary constraints. Since

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people with disability often have no access to these technologies, they are
unable to avail themselves of their benefits. This situation is widespread and all
too common even in countries with medium to high degrees of development.

The challenge is to turn this right into a political priority throughout the world.
Governments must understand we are not requesting a luxury, but simply
asking for the basic needs of millions of human beings to be met: There are
technologies that would go a long way to alleviating the problems of many
people with disability, but that are beyond the grasp of the people who require
them. Granting this right would be the final decisive step in our move towards
a high quality collective life based on human cooperation and solidarity.

2. EDUCATION AND LIFE LONG LEARNING FOR ALL

Education is a fundamental aspect of social integration for everyone, and it is

no less so for people with disability. This has been recognised in international
documents and declarations made by various organisations: the United
Nations, UNESCO, the World Bank, the Organisation for Cooperation and
Economic Development, the Organisation of American States, the European
Commission, etc.

Nonetheless, in the area of education, there is still

a lot of work to do. In developed countries like the United States, Canada,
Australia or Western European countries that have been trying to eliminate
barriers for a number of years, despite an increase in the number of students
with disabilities taking part in higher education, people with disability are still
under-represented in educational circles compared to the general population.
The percentage of students who abandon their studies or change centres is
significantly higher among people with disability than the rest of the student
population. Furthermore, it is a fact that students with disability tend to choose
post-graduate courses of study that take less time to complete.

As an example of what is happening in Europe, according to data provided by

Eurostat referring to 1996, only 9.3% of persons with serious disabilities carry
out university studies in the European Union, as opposed to 17.7% of persons
who suffer from no disability and 14.2% of persons who declared themselves
to be slightly disabled.

This inequality is still greater in less developed countries. For example, in

Central America the statistics confirm that people with disability receive less
education, and drop out of education earlier than people without disability.
Despite the efforts that have been made to correct this situation, educational
opportunities are still limited for people with disability due to shortfalls in the
programmes offered, and participation rates are, consequently, very low.
Illiteracy is likewise higher among people with disability. At the other end of
the spectrum, the higher the level of education, the fewer people with disability
are enrolled. The UNESCO, with data for the year 2000, states that in Central

63
and South America, only between 1% and 10% of disabled children, depending
on the country, have access to primary education. Integration in mainstream
schools is practically non-existent and this situation is even worse in rural
areas.

2.1. Integrated education

Not only are the levels of education for people with disability generally lower
than those for persons without disability, people with disability are rarely
integrated into the mainstream educational system. They are blocked by
physical obstacles, such as architectural barriers and other, more
transcendental barriers, such as a lack of sensitivity towards the special
educational needs of students with disability or their acceptance in the ordinary
classroom. Few imaginative measures have been deployed to make this
integration reality and few proposals have been forwarded to establish the
mechanisms necessary for education in inclusive environments. These
difficulties persist from early education throughout the entire cycle.

Efforts and policies geared towards mainstreaming education have been

significant in the majority of Western European countries and the United States
since the nineteen sixties and seventies. However, there are still appreciable
differences between what these countries recognise as special educational
requirements. These may go from traditionally defined physical or mental
disabilities, to difficulties in learning and disadvantages derived from poverty
and other kinds of social exclusion.

In developing countries, different religious or aid-promoting organisations have

followed the old model of segregated education and, when governments have
accepted their responsibility for the education of children with disability, they
have continued along the same lines. The situation improved somewhat
following the publication of the Standard Rules, when governments began to
increase their budgets for special education, although in-depth reforms aimed
at integrating education have yet to be implemented.

However, if schools are to become truly integrated and inclusive environments

that respond to the special educational needs of children with disabilities, a
major change in attitude will have to take place in all the organisations
involved. The UNESCO, with its contribution Education for everyone, has
already established integration, participation and the fight against exclusion as
the keys to achieving equal opportunities in education for children with
disabilities. The “Declaration of Salamanca and the Framework for Action on
special educational needs”, approved in the UNESCO conference of 1994,
details these principles, along with a series of directives for action on the
national, regional and international levels. This document continues to provide
guidance and benchmarks for organisations changing their policies to favour an
integrating educational system.

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 “The main aspect of the Framework of Action is that schools should accept all children
regardless of their physical, intellectual, social, emotional, linguistic and other conditions.
Both disabled and gifted children should be accepted, children who live in the street and
children who work, children from remote settlements or nomads, children from linguistic,
ethnic or cultural minorities and children from other discriminated groups or less-favoured
regions. All of these conditions give rise to a series of challenges for the school systems. In
the context of this Framework of Action, the term “special educational needs” refers to all
children or youths whose needs derive from their capacity for, or difficulties in learning. Many
children have difficulty in learning and therefore have special educational needs at some time
in their school career. Schools have to find a way of successfully educating all children,
including those who are severely disabled. It is generally agreed that children and youths with
special educational needs be included in the educational plans drawn up for the majority of
children. This idea has given rise to the concept of the integrating school. The challenge facing
these integrating schools is to develop a teaching programme focussed on the child, which is
capable of successfully educating all the children in the school, including those suffering from
serious disabilities. The merit of these schools is not only that they are able to provide quality
education for all children; the creation of these schools is a significant step towards changing
attitudes of discrimination, creating communities which accept everyone and integrating
societies.

Declaration of Salamanca and Framework for Action on special educational needs. UNESCO.
1994

Likewise, the OECD declared inclusion to be the best option for students with
special needs.

Thanks to these advances, integrated education has begun to receive more

attention in various countries. As a reference, the UNESCO report of 1995
concerning special educational needs states that the number of countries which
expressly contemplate integration in their education policies was 92% of all
those providing information. This figure dropped to only 75% in 1998.

Despite promising examples of good practices in integrated education, we must

continue to work to systematically integrate educational systems to obtain the
results pursued. There is evidence of the difficulties experienced by disabled
students and their families when they are included in mainstream schools, but
there are also many cases that demonstrate the benefits of inclusion when the
associations for people with disability, parents and specialised teachers all
work together to design new formulae and models.

Furthermore, the heterogeneity of the disabled population is at once a difficulty

to be overcome, and an opportunity. No one educational pattern adapts to all
disabled people, and different needs require different remedies. An open and
flexible school must be creative if it is to offer solutions based on the principles
of integration, individualisation, and mainstreaming. Additionally, schools must
respond to the special educational needs of all their students in order to allow
each one to fully reach his or her capacities and potential. Each and every
child, whether with or without disability, has unique capacities and potential
that must be fully developed.

It is unlikely that special education schools will disappear, but their role will be transformed

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 and they will be converted into specialised environments for students with serious
disadvantages. They will also serve as centres of resources for orientation and training, which
will contribute effectively to normalisation (families, members of the community, service
suppliers, professionals, bureaucrats, Administration, etc.) and the planning of installations
and programmes for person with serious and multiple disabilities.

Dr. Thakur V. Hari Prasad, Chairman of the Rehabilitation Council. India.

Technological aids, methodologies and strategies that are oriented to the

individual needs of each child in the classroom greatly facilitate the
participation of children with disability within a less restrictive environment.

Experts have collaborated to develop initiatives to promote inclusion in

mainstream schools. Through these, pilot programmes incorporating good
practices have been tested in schools or groups of schools and specific
strategies have been assayed. Simple strategies like training a group of
teachers who, in turn, become instructors for certain special skills like sign
language are producing good results. Other simple measures have been
proposed, such as adequate remuneration for teachers, support for specialist
teachers so that they can cover the needs of certain students as a first step to
their inclusion in the ordinary classroom, opening more training facilities to
better prepare new teachers to work in inclusive settings, developing the right
teaching materials and sharing experiences and information on improved
practices. Other crucial resources can be found through the inclusion of
parents, associations for people with disability, professional associations and
specialised institutions in the mainstream educational process.

This educational focus is also supported by research conducted in less

developed countries. Studies by the World Bank in Asia have shown the
personal, social and economic benefits of including students with special
educational needs in the mainstream. Furthermore, figures show that disabled
students can be educated successfully and more economically in these ordinary
centres rather than in specialised institutions.

In the future, it is not likely that special education centres will be closed,
although their role will be changed. They will become specialised centres for
students with serious disabilities, and will act as training centres for families,
members of the community, service providers, professionals, the
Administration, etc., with a focus on effective mainstreaming. They will be
used as planning centres for programmes and installations for persons with
severe disabilities.

Students with disability are not the only ones who will benefit from
mainstreaming. For the educational community as whole, there are obvious
benefits to be reaped from sharing knowledge and skills on a regular basis,
through teacher exchanges between ordinary and special education settings.

In countries where mainstreaming is widespread, successful integration is at

times difficult because there is not enough support in the classroom. Because

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of these problems, some parents have turned their backs on integration and
opt for special education to ensure that their children receive the care they
need. Integration requires an individualised curriculum which must be devised
by the centre’s teachers, tutors and administrators. When adaptation is
impossible, specific parallel classes should be given, but always with the
purpose of ensuring that children with disability spend as much time as
possible with other students.

The problem of integration does not stop after successful mainstreaming in

primary education, but must continue throughout secondary and higher
education as well. Opportunities for integrated education must be available for
students with disability at all subsequent levels and special attention must be
paid not only to educational aspects but to physical accessibility as well. It is
paradoxical that on too many occasions a student with disability who has
successfully completed primary and secondary education with far more effort
than his non-disabled peers suddenly comes up against a final, insurmountable
obstacle in the form of architectural barriers that prevent him from accessing
further education.

Mainstreaming does not benefit students with disability alone. Specialised

professionals have traditionally stressed the advantages of integration for
students with disability, but they have often overlooked the benefits for the
rest of society. Globalisation is eliminating frontiers of all kinds: from political,
racial, religious, ideological to physical perspectives. This means we will have
to adopt new systems to help us learn how to live together with people who
are more and more different from us, yet who through this diversity bring
different experiences and talents. Successful adaptation to this new reality will
mean an exponential increase in our ability to take full advantage of
globalisation, and to grow as supportive individuals living in a global
community.

When in September 2001, the Director General of the UNESCO, Koichiro

Matsuura, announced the launch of an emblematic educational programme
focused on inclusion, this sent the disabled community a ray of hope that
progress will be made.

Likewise, the Madrid Declaration, on the occasion of the European Congress on

People with Disability held in Madrid in 2002, proposed Non discrimination +
Positive Action = Social Inclusion, a theme that is especially applicable to
education.

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 Schools should take a relevant role in distributing the message of understanding and
accepting the rights of the people with disability, in helping to dissipate fears, myths and
erroneous concepts and supporting the efforts of all the community. They should widely
develop and distribute educational resources to help students to develop an individual sense
of respect for their own disability and the disabilities of others, and they should help to
recognise differences more positively.

It is necessary that we achieve education for all in terms of full participation and equality.
Education directly conditions and influences the future perspectives of personal, labour and
social plans, and so the educational system should be a key place for personal development
and social insertion which will permit that, in the future, children and youths with disabilities
will become more autonomous, and as independent as possible. The educational system
should be the first step in achieving an integrating and non-exclusive society.

Declaration of Madrid. 2002.

2.2. Education. What are our aims?

The ultimate aim of any educational process is to equip people with the means
to live independently and autonomously, and this is no less true for people
with disability. Integration means that people with disability will join the labour
market and participate in all of society’s day to day activities in the same way
as the rest of the community. As everyone else, they seek an education that
will allow them to do this.

Financial restraints are often cited as an excuse for not providing people with
disability the services they need. Economic excuses are brandished to explain
the difficulties people with disability experience, and to justify the
government’s inertia in taking the necessary steps to confront them.

Nonetheless, these arguments show that the cost of improving the education
and training of people with disability is not sufficiently understood. The savings
derived from having fewer people living on state pensions, as opposed to
allowing them to work and live independently, have not been analysed in
sufficient depth. Compared to the expense of maintaining dependent citizens,
the cost of integrating people with disability into the educational system and
the labour market is minimal, especially when we consider that people who
work contribute to society. The social and economic gains would redound to
the benefit of all.

Fortunately, in recent years, significant advances have called into question

established beliefs about the productive capacity of people with specific kinds
of disabilities. Thanks to these changes in attitudes, many people with
disability now have more opportunities for employment and integration. And
results have proven that, with the appropriate education, people with disability
can acquire the same skills, and develop the same talents, objectives and
aspirations as anyone else.

Access to better education is beginning to be understood as a prerequisite to

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access to the labour market, and not only as a desirable goal in and of itself.
Success depends on adequate training, combined with a thorough analysis of
the needs of the labour market, to ensure that people with disability offer
competitive skills. In some countries, like Sweden, the institutions receiving
subsidies to train people with disability are required to conjugate these two
factors, and some are being converted into fully fledged training centres.

These developments have led us to question whether training provided in

special centres for specific disabilities are really meeting the needs of the
disabled population. Can preparation in a sheltered environment, to work in a
sheltered environment really prepare people with disability to get, and keep a
job in the mainstream labour market?

Improvements in basic education for people with disability must be

accompanied by a rigorous analysis of the labour market to pave the way to
eventual integration. Unemployed workers with disability should become
familiar with the mainstream labour market as part of their training, and vice
versa. Contact between the market and disabled workers would elucidate the
training strategies that need to be designed to improve conditions for these
workers, and transfer the concepts of integration and inclusion from the field of
education to the labour market. These measures would serve to gradually
phase out niches currently reserved for sheltered employment, retaining only
those filled by the severely disabled, and open the door for people with
disability to jobs under the same conditions, rights and obligations as the rest
of the active population.

Another form of education, known today as “life-long learning”, is

indispensable for anyone who does not wish to run the risk of being excluded
from the labour market. Before gaining employment, workers must acquire
basic skills, but they must also keep abreast of changes in their profession if
they are to keep their jobs. On-going training must be guaranteed for the
employed to help them maintain and perfect their professional capacities, and
avoid being expelled from the labour market. People with disability are even
more at risk than others in this respect. Courses must be offered to all
workers, including people with disability, to help perfect skills or acquire new
ones and new technologies in the specific context of their current labour
activities.

The training process for people with disability should be considered as a single,
continuous experience, where itineraries must be designed to help a person
progress from acquiring the most basic skills, through to the most specialised.
Training should really be thought of as a combination of life-long learning
processes, especially adapted for people with initially low levels of instruction,
with modules that teach skills and qualifications according to a logical pattern.
Programmes need to prepare people to specialise within a family of jobs. To
sum up, educational processes designed for people with disability must begin
by filling in the gaps left by the deficiencies in the general educational system.
After people have been brought up to par, they should concentrate on learning

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an occupation. The special difficulties of groups of people who have a high risk
of failure must be taken into account when designing programmes: Courses
must be adapted to all kinds of disabilities; modules can be made longer, and
given to smaller groups of students; intensive contact with new technologies
must be provided; the skills necessary to get a job can be taught through
simulation of the labour market in the classroom; students’ progress must be
constantly evaluated in light of their opportunities to get a job. In other words,
training must be focused towards joining the labour market.

A high percentage of unemployed disabled workers have no training at all. Neither do the
great majority of the people with disability who are unemployed have a profession, nor have
they taken part in vocational training programmes. Public institutions have always preferred
to push this situation aside through assistance techniques which assume the failure of the
system as being inefficient, without taking into account that there are other roads which, even
when they move away from the general training and placement processes, are better adapted
to the real circumstances of these disabled persons and which, following a specific process,
lead to integration. More than twenty-five percent of the people with disability without
standard training find work after taking part in vocational training programmes.

Constantino Méndez Martínez, Director General of Fundosa Social Consulting, a company

specialising in training and employment for people with disability, belonging to the Fundación
ONCE (Spain).

We must accept that people with disability may need to learn at their own rate
to achieve the same qualifications as other students, although this should
never be reflected in the certificates awarded for the skills obtained. Diversity
and difference have begun to be accepted as the new paradigms of reality, and
they should also become the principles of public action and practices to
promote integration and fight exclusion. An adequate training strategy is one
that teaches us to "learn how to learn" individually and on an on-going basis.

Likewise, it is important to encourage measures to help people with disability

evaluate their own situation as, often, they are unaware that their level of
education or training is insufficient to allow them to reach the labour market.
Overcoming these deficiencies will help them increase the probability of finding
employment and, consequently, of becoming socially integrated with equal
rights and obligations.

Another aspect to be taken into account is that people with disability must
learn the techniques necessary to find a job. They often need someone to
teach them to fill in a form or write a letter, to speak on the telephone or
prepare for an interview. Many countries provide training in these areas, for
example, through government employment offices, and some countries
provide training for people with disability who are looking for work using
similar techniques as those taught to the long-term unemployed.

2.3. Training in the Information Society

The Information Society presents us with new challenges and new

opportunities. There is no question that new technologies will have a major

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impact in promoting the inclusion of people with disability in the new
Interactive Society. The growing importance of telecommunications and
information technologies means that today's societies will be connected more
and more through networks. The relevance of these networks will be
determined by the social and economic applications that pass through them,
thus turning the new technologies and their applications into the pillars that
sustain today’s organisations. Another important asset of the new information
technologies is that they facilitate on-going learning, and it is clear that
organisations become more efficient the more they learn. However, to be
successfully applied, knowledge must be managed in real time, and it must
reach all of an organisation’s members simultaneously. Different personal
conditions and circumstances should never be a reason to exclude anyone from
participating in these crucial processes, since they contribute to shaping the
thoughts and actions of each society or human group.

The development of collective intelligence is the principal capital gain to be

obtained through investments in cables and programmes. Without this
capacity, the new information technologies would loose much of their potential.
However, developing human capital is not something that can be improvised,
nor can it be done merely through material investments. It requires slower
processes that involve all the different actors who will ultimately be the true
driving force behind the growth of this new social capital - knowledge.

In this context of growing opportunities on the one hand, but with the
increasing risk of creating a dual track society that accentuates exclusion, on
the other, certain users of the Information Society run the risk of encountering
barriers to accessibility and equality. If we ignore this segment of the
population, our collective intelligence will be mutilated, and we will miss the
opportunity to build a truly Cognitive Society, sustained by the contribution of
each and every one of its members. We cannot, therefore, simply reject what
10% of the population has to offer. Nor can we ignore members of society with
age-related disabilities who have particular difficulties in accessing networks
and the services available through them.

If we wish to achieve the objective of living in societies that place high value
on education and employment, and nurture a better, fairer and more
supportive quality of life, we must pay special attention to disability when
building the Information Society. It is only by taking into account the needs of
all that we will be able to exploit these new opportunities to the fullest.

Policies that train people with disability in the use of the new technologies and
their applications in the Information Society must be encouraged and
developed. People with disability must be prepared to take advantage of the
new professional horizons that will open up. Furthermore, specific measures
must be adopted to encourage the participation of these special users who,
after all, expect to share in all the opportunities engendered by the Learning
Society. One of the immediate benefits these new networks and applications
offer is the possibility to learn interactively, by pooling experiences and

71
expectations. So, care must be taken to ensure that we pave the road to a
Knowledge Society that is supportive and finds room to nurture the ideas and
hopes of all of its members.

The Digital Opportunity that President Clinton backed was developed very
much with this focus. Another good programme in this field is e-Europe, which
has been sensitive from the outset to the principles exposed in the Manifesto
on the Information Society and People with Disability, drawn up by the
European Disability Forum. This document reinforces the idea that people with
disability should be leading players in the Interactive Society, and not merely
the passive subjects of palliative aid programmes designed without any real
knowledge of their circumstances. The Manifesto addresses issues ranging
from education, employment, legislation, market forces, social utility,
accessibility and availability.

Sufficient funds must be earmarked to incorporate the concept of design for all
into all new technologies if we are to keep from creating a digital breach that
leaves some members of the community behind. The new technologies will
have to be deployed with the intention of facilitating access to all. Otherwise,
we will miss our opportunity to build a new society where everyone has a role
to play in the development of collective intelligence. Accessibility is the key to
allowing our collective intelligence to reach its fullest potential, because it is
only then that all people be included in the process.

One of the bi-products of the new technologies is that they will allow us to
manage the development of personal capacities, and this will enhance the
employability of all members of society. However, there is a downside to the
new technologies that we must not forget. With the accelerated rate at which
we are all expected to adapt to the rapid changes taking place around us, it
would be very easy for anyone to acquire a functional disability that restricts
active life, and anyone of us we may suddenly find ourselves on the other side
of the digital divide.

Promoting an inclusive digital society is much more than a gesture towards

people with disability. It is a way of dispelling unfounded social prejudices, and
a safeguard against forfeiting the contributions of certain members of society.
Our collective intelligence will be regenerated and broadened in the measure
that the networks permit the access of as many individuals as possible, with
the confidence that this will contribute to the welfare of all, without exclusion
or discrimination. Quite apart from being an affront to the human dignity of
anyone who is left out of this process, any exclusion or discrimination would
result in the impoverishment of society as a whole.

3. OPPORTUNITIES AND EXAMPLES OF INCORPORATION INTO THE

LABOUR MARKETS

The basic problem

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 It can be affirmed that disability generally brings with it a state of impoverishment. In fact,
the deteriorated economic situation of many of people with disability is tied directly to the
difficulties in access to work, despite the fact that many people with disability are sufficiently
capable of carrying out productive activities which are compatible with their condition. In
other cases, the contracting of people with disability has even led to the employer's ignoring
the level of minimum salaries, especially in the case of the mentally disabled.

Not even the setting up of reserved labour quotas with economic and tax incentives for the
employer has managed to overcome the basic problem, which is the employers' lack of
awareness of the potential and talents of many of the people with disability who are looking
for employment, which shows a deep-rooted sub-cultural mentality.

I can't avoid mentioning that, in the face of this dearth of jobs for people with disability, the
phenomenon of the micro-company has slowly been taking on among people with disability,
showing the business acumen of some members of this group. On occasions, they also
contract other disabled workers, showing that they are more assertive in the application of
the rules of equality, evaluating their workers as exceptional, satisfactory, normal or poor in
the same way as any other employer would do with a worker who was not disabled.

María Soledad Cisternas Reyes, Lawyer and Political Scientist, Director of the Legal
Programme on Disability at the Diego Portales University, Santiago (Chile)

The ILO estimates that there are some 386 million disabled people in the world
who are of working age. These are people who have the potential to join the
labour market and to contribute to the development of their communities as
employees, independent workers or businessmen and women, and that is
precisely what they wish to do.

Some businesses have begun to discover this potential. Many governments

have passed laws, established policies and developed programmes aimed at
assisting people with disability who are looking for employment, helping
workers who become disabled maintain their jobs or facilitating the re-entry
into the labour market of workers who have lost their employment as a result
of disability. In instances where governments have failed to act, organisations
that represent people with disability have become the champions of
employment for people with disability, aware of the gravity of the problem.

Nonetheless, the reality remains that many of the people with disability who
can and wish to work find themselves unemployed. The unemployment rate
among people with disability is considerably higher than in the remainder of
the active population, reaching 80% in some countries. Furthermore, when
people with disability work, they frequently occupy jobs that pay less and offer
few possibilities for professional promotion. The end result is that many people
with disability live in poverty and their potential contribution to their families,
companies and society is lost.

Second Class Citizens

As a group, people with disability are second class citizens in the workplace practically
throughout the world. Due to a combination of factors, including lower levels of education and
training, together with a generalised series of prejudices, people with disability tend not to

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 work, or they do so in jobs that require little specialisation and have poor salaries.

In general, the situation regarding employment for people with disability is bleak. The
combination of inaccessible public transport, architectural barriers and the barriers caused by
the attitudes of others, chronic unemployment and the lack of sufficient resources to help
people with disability all means that the employment of disabled persons is very much a
marginal activity. Furthermore, an important obstacle to progress is the lack of any general
understanding as to the true capacities of men and women with disability, and this is true
both for people with disabilities and people without. This creates a vicious circle, because, just
as there are relatively few people with disabilities amongst the active population, there are
also very few models of productive persons with disabilities.

Some countries have legal requirements which theoretically oblige companies to contract a
certain number of disabled workers. However, if they do not comply with these laws, the fines
are generally so small that the laws are virtually ineffective. Even multinational conglomerates
which generally contract men and women with disability in some companies do not do so in all
countries.

Sid Wolinsky, Disability Rights Advocates. California (USA)

This situation prevails because employers often believe that people with
disability are unqualified for work, so disabled workers are not given the
opportunity to prove them wrong. Other reasons include the fact that many
people with disability have not had access to education or professional training,
the auxiliary services they require are not available, legislation and policies in
their countries do not facilitate their incorporation into employment and
buildings and transport are not accessible. Likewise, many people with
disability have accepted a certain culture of passivity, inspired by the
circumstances that surround them, that leads many to think that they have
nothing to offer the job market and are doomed to depend economically on
subsidies or on their families.

These and other obstacles are preventing many people with disability from
finding jobs that will allow them to earn a living, maintain their families and
contribute to the national economy. This is a great waste and an enormous
loss, not only for people with disability and their families, but also for the
business sector and society as a whole. It is a palpable and unjustified loss of
human talent, a situation that short changes us all.

3.1. Changes in opportunities for employment

Thanks to the activism of the disability movement, significant changes in

employment policies for people with disability have been introduced in recent
years. More emphasis is now placed on providing labour opportunities and
more resources are dedicated to ensuring access to jobs in both the
mainstream and sheltered markets. These changes are due, to a large extent,
to the pressure exercised by people with disability themselves and their
organisations, which defend full inclusion and equality. A second important
factor to explain these changes is an increasing awareness that the difficulties
people with disability face when trying to obtain or keep a job are due more to
the way in which the job is structured and organised than to the person’s

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disability per se. With the right measures, these obstacles can be overcome. A
third reason for these changes is the fact that governments and other agents
are becoming convinced that the exclusion of people with disability from the
workplace is an unacceptable economic waste.

As a result of these changes in labour policies, in many countries people with

disability currently enjoy a wide range of options for employment. They hold
jobs in sheltered workshops, Public Administrations, supported employment
settings, non-profit organizations, in the mainstream labour market and as
self-employed workers.

The costs of passive policies

The costs of subsidies to income for people with disability who are of working age are very
high in those countries which have these kinds of subsidy. The costs of these subsidies
calculated in recent years account for 6 percent of the GDP in Holland, 3.5 percent of the GDP
in Germany and 2.5 percent of the GDP in France. In the United States, Social Security pays
around 1,000 million Dollars a year to people with disability.

These costs have increased greatly in recent years. In the United States, the two most
significant aid programmes for people with disability of working age increased by 59% during
the nineties, with an increase from 4 to 6.3 million of persons receiving benefit. It is
estimated that if one percent of these 6.3 million people were to return to work, a saving of
2,900 million Dollars would be made.

Besides the direct costs of paying subsidies to people with disability, there is also a significant
cost for the national economy, derived from the fact that many people who can work are
excluded from the labour market. The annual value of the GDP which was lost due to total or
partial disability was estimated at 45,800 million Canadian Dollars in 1993, which represented
7.7% of the total Canadian GDP for that year (Health Canada, 1997). A study carried out by
the World Bank used the same method as that used in Canada to calculate the loss in GDP for
the whole world and the figure was between 1.37 and 1.94 billion American Dollars (Metts,
2000).

Barbara Murray, International Labour Organisation

3.2. The option of sheltered employment

While sheltered employment continues to fulfil a role, innovative steps must be

taken to favour the transition from sheltered to ordinary employment for those
who are able to make this change. These measures are crucial to overcome the
segregation imposed when people with disability are confined to the world of
protected workshops and other sheltered situations. However, as any change
in values tends to be slow, companies in the mainstream labour market will
continue to resist and erect barriers to the incorporation of people with
disability. Just as the road to full equality between men and women in
employment, access to managerial posts and equal salaries is proving to be
long and arduous, the road to the incorporation of people with disability, and
particularly of women with disability, into the mainstream labour market will be
even longer.

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Sheltered employment will no doubt continue to constitute a step towards the
mainstream labour market and remain a viable option for many disabled
workers, particularly those with severe or mental disabilities. For these
reasons, it is imperative to improve the quality and competitiveness of
sheltered employment.

In many countries, special employment centres, protected companies or

vocational centres are effective instruments that provide employment to the
severely disabled who would otherwise be excluded from the labour market.
Providing adequate training for workers with disability and for the people who
supervise them will be a key strategy for the future of sheltered employment.
New forms of employment will also have to be created to diversify the services
offered by these centres. On the other side of the coin, however, the significant
role played by vocational centres as training resources for mainstream
employment should be recognised. These pre-labour centres are an invaluable
niche for workers preparing for employment in the mainstream setting.
Appropriate regulation of the sheltered sector is, therefore, crucial to achieving
the ultimate goal of employment for people with disability.

For persons with certain kinds of disabilities (fundamentally persons with

mental impairments), a protected workshop may be an excellent starting point
for discovering skills. It provides an environment where workers can acquire
job experience, while discovering what kind of work they are best suited for.

3.3. The transition to mainstream employment: innovative formulae

for the inclusion of people with disability in the mainstream
labour market.

Experience shows that the integration of a significant number of disabled

people into the mainstream labour market is an objective well within reach. A
wide range of measures have been developed to assist this process. These
include quota systems that reserve employment for people with disabilities in
public and private companies, training or vocational guidance, subsidies and
tax incentives for contracting disabled workers. There are many measures or
formulae that can enhance the employability of people with disability:

1The social agents must be more actively committed by supporting

formulae like "enclaves of employment” or “supported
employment”.

2Companies often decide to outsource part of their production

processes or peripheral services by means of subcontracting. The
flexibility afforded by these practices can facilitate employment for
people with disability.

3In many countries there is a legal obligation on the part of companies

to reserve a certain number of jobs for disabled workers or,

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 alternatively, to pay a contribution to a special fund that promotes
employment of the disabled. Yet, there are other ways to support
employment of people with disability: contracting supplies or
services from a sheltered workshop, or making an economic
contribution to public-use foundations working in the field of
disability. In some countries, the public procurement of goods
and services must meet conditions that ensure compliance with
anti-discrimination legislation and regulations governing reserved
employment by the companies supplying the Public
Administrations. It is necessary to continue to explore all forms of
collaboration with the business sector in general, through
temporary employment agencies, for example.

4Many disabled workers do not adapt easily to ordinary employment

and are more comfortable working in the Social Economy, through
"self-help" schemes and specialised placement companies.

To achieve the objective of integrating more and more disabled workers into
the labour market, priority must be given to business initiatives that
incorporate measures that fight against social exclusion by creating
employment. Successful initiatives should always combine economic viability
with the objectives of creating employment and improving living and working
conditions for people with disability.

3.4. Quota systems

To promote employment opportunities for people with disability in the

mainstream labour market, various European countries and, more recently,
certain Asian countries, have introduced quota systems which oblige
companies to reserve a percentage of posts for disabled workers. Firms that do
not comply with this obligation are liable to fines or must contribute an amount
of money to funds destined to finance professional rehabilitation and
employment promotion activities.

These quota systems do not exist everywhere. Some countries, like Sweden,
Denmark, Norway and Finland, consider that the quota system contradicts
their doctrine and traditions, and prefer methods aimed at persuading
employers to offer employment opportunities to people with disability and
providing people with disability seeking employment with the necessary
training to enhance their skills, together with other complementary aid. Other
countries, like the United States, Canada and Australia, fundamentally
endeavour to ensure equality in access to employment and non-discrimination.
Unfortunately, existing quota systems are not universally upheld, and
governments and authorities remain impassive in the face of these violations.

The reserved quota is not uniform and the percentage of posts reserved for
disabled workers varies from one country to another. The quota usually

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oscillates between 2 and 6% of a company’s pay bill; it may be calculated on
the basis of the total number of employees in the company regardless of the
number of work centres, or it may be applied in accordance with each work
centre. Likewise, the quota normally only applies to companies with a
minimum number of workers, usually between 25 and 50, as it is generally felt
that small companies should be exempt from this obligation. In those countries
where there is a quota system, a distinction is generally made between the
public sector (employment provided by Public Administrations or organisms
that report to them), and private employment (provided by employers from
the private sector). The public sector usually has higher reserved quota than
the private, because it is expected to have a greater moral obligation and
commitment with regard to the incorporation of disabled workers.

Generally, reserved employment is established by a legal disposition, especially

when this provision requires discriminatory treatment against workers without
disability, or positive discrimination. For the most part, positive discrimination
is accepted provided it is based on a justifiable cause and that it is governed
by sufficiently high legal standards. Nonetheless, while the obligation is
established by law, in some countries collective bargaining procedures afford
the social agents considerable room for manoeuvre with regard to establishing
quotas in the different sectors or companies.

The debate on the efficiency of a legally reserved quota is an old one that is far
from resolved. On the one hand, where they exist, these legal provisions are
not strictly enforced, a situation that might seem to imply that the
incorporation of people with disability into the mainstream workforce has been
a failure. However, it is also true that the very existence of this legal
instrument to promote employment, has given disability activists a powerful
weapon that they can adapt to the realities and circumstances of each
individual country. In countries where a legally reserved quota does exist, the
organisations of people with disability generally defend it, despite its limited
effect. And in spite of its limited effectiveness, the reserved quota has opened
the door to positive discrimination measures in different areas of labour
legislation, and has settled the debate as to whether this kind of legislation is
admissible.

3.5. Economic support for companies and workers

Employers have a crucial role to play in promoting mainstream employment

opportunities for people with disability. Companies must also be instrumental
in developing programmes to keep employees who acquire labour-related
disabilities and in designing strategies for the re-entry of people who have lost
their jobs due to the onset of a disability.

Economic incentives to encourage companies to hire disabled workers or keep

them on the workforce provide important instruments to promote employment.
Just as it has been recognised that training and guidance in finding

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employment are better investments than maintaining dependent citizens, this
new focus is a result of the understanding that it is more effective to transfer
as many resources as possible from passive policies (economic subsidies for
situations of need and/or unemployment) towards measures that encourage
employment. Subsidies for hiring people with disability have three purposes: to
compensate for lower performance levels or the costs involved in hiring
disabled workers; to stimulate contracting people with disability; and to cover,
in part or totally, the costs of adapting the workplace to suit disabled workers.
Subsidies can take many forms, from direct subsidies or aid with salaries, to
tax rebates or lower Social Security contributions.

An alternative way of encouraging compliance with the directives on non-discrimination

against people with disability in employment begins with the use of the directives in public
acquisitions. Public organisms which award public tenders could demand that tenders will only
be accepted from those companies which comply with the directives existing on non-
discrimination. In view of this requirement for the compliance of contracts, the social factors
(and of the environment) could be evaluated together with the economic criteria (for
example, price and quality) when taking decisions regarding the acquisition of tenders.

Lisa Waddington. Maastricht University, Holland.

Workers may also benefit directly from subsidies. They can receive aid to open
their own businesses, become otherwise self-employed or work under a Social
Economy regime, acquire equipment or instruments necessary to improve
mobility or receive adapted training.

3.6. Self-employment

Self-employment provides a fundamental formula to join the active population,

particularly in developing countries where a large part of the workforce is self-
employed in either formal or informal sectors. Nevertheless, although self-
employment has a lot of potential for people with disability, particularly with
the advent of tele-working and e-mail, little or no attention has been paid to
this alternative until very recently.

As part of their public employment services, many countries offer economic aid
to people with disability who wish to start their own businesses. While
undeniably helpful, these measures are not enough to ensure the success of a
new enterprise. Apart from technical training, the entrepreneur will need to
acquire skills in fields such as management and accounting, and the disabled
businessperson may also need technical assessment and aid, and access to
credit lines to purchase special equipment and materials. Public employment
services can provide direct assistance to back these initiatives, or they can
direct disabled entrepreneurs to the places where they can find the answers to
these issues.

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3.7. Supported employment

In the past, it was very difficult for people with disability to make the move
from sheltered work settings to jobs in the mainstream labour market. While
there have been cases of disabled workers who have been able to transfer
experience acquired in a special centre to the ordinary market, there are many
fewer than we would like to see.

Recently, a new option known as "supported employment" has begun to be

explored. This consists of accompanying the person with a physical,
psychological or sensorial disability who requires support and supervision when
finding, learning and maintaining a job. Supported employment facilitates the
change from a sheltered setting to normal employment. In the beginning,
supported employment programmes were aimed at people with intellectual
disabilities, but experience has shown that this alternative is valid for any
disabled person who is unable to access the ordinary labour market without
assistance. As a result of these programmes, supported workers who make the
shift successfully after a trial period are being contracted as permanent
employees.

Supported employment programmes have proven to be an effective way of

facilitating the transition towards mainstream employment, and they may also
serve as a valid alternative for people with disability who have difficulties in
finding or keeping a job.

Supported employment combines the personal aid given by tutors with other
kinds of assistance. For example, a support agent may visit the workplace,
either at regular intervals or upon the request of the employer, to prevent or
rapidly solve any problems which might arise. The extent of supervision and
aid provided depends on the needs of each person.

3.8. The role of the different social agents

Unfortunately, to date social agents like trade unions and professional

associations have done very little to reinforce employment of people with
disabilities, despite the primordial role these organisations have in regulating
the labour market through collective bargaining and participation in the “social
dialogue”. Although some very praiseworthy actions have been taken in a few
countries, the trade unions and professional organisations have generally
ignored the labour aspects associated with disability. People with disability
have been treated as invisible members of society with regards to
employment, and the organisations for people with disability have increasingly
had to step in to fill this void. Unfortunately, this has given rise to
misunderstandings and rivalry between the trade unions and the disability
movement.

The social agents must become more involved in expanding labour

opportunities for people with disability. They should use their leverage to

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request and set up programmes aimed at the inclusion of people with disability
in the labour force. They should also use their consolidated social position to
ensure compliance with the standards and regulations in force affecting
employment and people with disability. In an effort to overcome their mutual
misunderstandings, the trade unions, professional organisations and
organisations representing people with disability should make the effort to
cooperate and eliminate unnecessary confrontations.

3.9. Social responsibility and company ethics

In recent years, within the European Union and in other European countries, it
has become obligatory for all companies participating in public tenders to
prove that they uphold all existing standards for non-discrimination. When
evaluating tenders submitted by potential suppliers, consideration is no longer
given exclusively to economic aspects, but to the companies’ social track
records as well.

The historical precedents for this attitude go back to the 19th Century in the
United States and United Kingdom. Then, certain religious communities like the
Quakers began to express their social and ethical responsibility by linking their
financial activities to “ethical investments”. They opposed participating in any
investment related to the slave trade or the production of alcohol. The first
ethical investment fund with social responsibility, as we understand it today,
was created in the United States in 1971. The Pax World Fund responded to
the demands of investors to exclude North American companies that benefited
economically from maintaining the war in Vietnam. In the United Kingdom, it
was during the fight against apartheid in South Africa that these funds were
first introduced.

Ethical Funds are having a direct influence on business behaviour and social
and ethical responsibility. In countries where they have been implemented,
these funds have become consolidated and they have a relevant impact on the
trends of the financial market. According to reports provided by EIRIS, in the
United Kingdom, data for 1999 indicate that the figure invested in these funds
was 4,255 million Euros, rising to around 6,074 million Euros in 2000. In the
United States, the capital invested in these funds increased by 60% between
1997 and 1999, reaching some 145,000 million Dollars by 1999.

In the United Kingdom, the ethical criteria applied to determine which

companies are eligible to be included in a fund most commonly call for the
exclusion of the tobacco, alcohol, armaments and nuclear energy industries,
and companies that do not uphold human and animal rights, sustainable
development and environmental management. Positive evaluations are given
to companies that have established labour relations programmes and promote
labour health and safety, women's rights and the rights of ethnic minorities in
managerial posts.

Ethical funds and social responsibility transmit the message to the public that

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investment decisions need not be governed exclusively by the criterion of
economic profitability, but that they should take into account issues like social
responsibility and ecology as well. Companies that adhere to these criteria
also convey the message to their employees that they are valued according to
parameters that integrate economic, social and environmental aspects.

The Global Reporting Initiative has designed the Guide for the elaboration of
Sustainability Reports to provide a uniform format that companies can use to
furnish information to the government and society at large about the
economic, environmental and social aspects of their activities, products and
services. Since it was launched in 1997, the Global Reporting Initiative has
made an effort to design and establish a global framework to provide
information on aspects related to sustainability. The reports should include
economic, environmental (impact of processes, products and services on air,
water, earth, biodiversity and human health) and social aspects (including
health and safety at work, stability of employment, labour rights, human
rights, salaries and labour conditions in external operations).

In response to the pressure exerted by groups in Civil Society seeking to

promote sustainable development, social considerations are becoming more
and more important in the business sector. In fact, international quality
certification bodies have begun to draw up social responsibility standards.
According to a recent study, 70% of all Europeans consider that the company,
as a social institution, has responsibilities that go beyond strict economic
activities; they believe businesses have an increasing responsibility to
contribute to improving the societies in which they conduct their activities.

Companies have developed different types of programmes to respond to the

expectations of all of their stakeholders. They are establishing internal codes of
conduct, making economic contributions to different social programmes, hiring
workers with disability, sponsoring community initiatives and social campaigns,
supporting the management of social organisations, making donations in kind,
conducting marketing campaigns for a cause and participating in voluntary
work.

Bearing these considerations in mind, the SA 8000 standard was established in

1997 by the Council on Economic Priorities Accreditation Agency (CEPAA). The
panel of experts was made up of members of organisations that represented
the entire spectrum of stakeholders in business (trade unions, manufacturers,
retailers, academia, NGO's and consultants and certification organisations).
This standard is aimed at the manufacturing industry, although it is also
appropriate for the services sector as well. A company with different work
centres must apply for the certificate for each one of them to ensure that they
all comply with the standard. Likewise, subsidiary companies are not audited
automatically as part of the certification process, but must participate in the
certification procedure independently.

The SA 8000 standard requires that certified companies comply with national

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legislation and any other applicable law, and that they respect the principles
established in a series of international instruments, including various
agreements and recommendations of the ILO concerning forced labour and
slavery, the right to collective bargaining, equal wages for men and women
carrying out the same work, minimum age limits, safety and health at work,
rehabilitation and employment of workers with disability, the Universal
Declaration of Human Rights and the United Nations’ Convention concerning
children's rights. When one of these subjects is addressed by both the
standard and the applicable legislation, the most demanding directive prevails.

In July 2000, the United Nations launched the World Pact on Social
Responsibility. This initiative was promoted by Kofi Annan in the World
Economic Forum held in Davos (Switzerland) in January 1999. Adhesion to the
World Pact is voluntary and is aimed at providing a general framework for
promoting collaboration between different social actors to strengthen social
responsibility, through committed and creative business leadership. The Pact
calls for companies to adopt universal principles in the areas of human rights,
labour standards and the environment. Apart from businesses, the Pact has
been signed by the United Nations, different workers' associations and non-
profit organisations, among others. Its objective, according to Kofi Annan, is
“to contribute to the adopting of values and principles which give the world
market a human face”.

In the European Union, the debate on the social responsibility of companies

began in 1995, when Jacques Delors, the then President of the European
Commission, and a group of European companies published a manifesto of
companies against exclusion. This led to the creation of a European network,
CSR Europe, to foster a dialogue between companies with the intent of sharing
good practices on aspects related to social responsibility.

Five years later, in the Council of Europe in Lisbon in March 2000, corporate
social responsibility was placed at the top of the European Union’s political
agenda. For the first time, the Heads of State of Europe made a call to
companies to show a sense of responsibility to help comply with the European
Union’s new strategic objective of becoming the most competitive and
integrated economy in the world. In July 2001, the European Commission
adopted a Green Paper, and a year later, it adopted a Communication on the
European strategy for corporate social responsibility, which was aimed at
promoting the contribution of the business community to sustainable
development. In this Communication companies were asked to take on a new
social and environmental role in a global economy. The Communication further
established a multi-lateral European Forum where all the stakeholders of the
business sector, social actors, business networks, Civil Society, consumers and
investors were able to exchange ideas about good practices and establish
principles for codes of conduct. They also worked on identifying objective
evaluation methods, validation tools and social labels to use to monitor
business practices.

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In spite of these developments there is very little mention of persons with
disabilities in connection with international and European political actions to
develop social responsibility. In the Green Paper mentioned above, companies
are asked to manage their resources with responsible, and specifically apply
non-discriminatory contracting practices to facilitate the entry into the labour
market of “ethnic minorities, older workers, women, the long term
unemployed, and less favoured persons”, without specific reference to people
with disability, who often suffer from multiple situations of discrimination.

3.10. The new dimension of non-discrimination in employment

As mentioned above, some countries (the United States, Canada, the United
Kingdom, etc.) and some supra-national organisations (the European Union)
have taken steps to promote employment for people with disability by
establishing specific legislation to help combat discrimination. This recently
developed approach goes further than “affirmative action”. It is based on the
idea that on many occasions people with disability are unable to access jobs
because of discrimination against them on the grounds of their disability. This
is a violation of their rights to equal opportunities. Legislation has, therefore,
been passed to give citizens with disability, their legal representatives and the
organisations representing them legal and administrative tools to allow them to
exercise their rights. With these new legal weapons, Public Administrations can
no longer turn a blind eye to discrimination.

These measures, which in essence turn non-discrimination into a universal

right, are proving to be effective in countries where they have been
implemented, although they alone will not be a major factor in getting people
into the labour market. Non-discrimination, if it is to have its full effect, must
be complemented with affirmative action, and articulated with material content
to bring people with disability closer to the elusive world of employment.

3.11. Challenges and opportunities in employment

The social and economic changes ushered in as the Information Society takes
root promise to be as revolutionary as the steam engine or the Industrial
Revolution were in their day.

Structural changes always represent a special danger for vulnerable groups,

whose livelihood is more easily eroded. However, this is not unavoidable. When
problems are anticipated, the dangers that accompany them can be seen as
challenges, and threats turned into opportunities.

Automation has eliminated many tasks previously requiring intensive unskilled

labour. It has also increased the demand for better trained workers. The
impact of automation on the employment of people with disability depends,
among other factors, on their level of qualification and their special needs
resulting from their disability. For many unqualified workers with disability,

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technological changes have had a negative impact on their employment
opportunities as they used to have access to jobs that no longer exist or are
slowly disappearing.

In counter balance, the advent of the Information Society has brought with it
myriad opportunities that may help create jobs for people with disability. First,
the new tools being developed, the information and communications
technologies, are simplifying the tasks involved in many traditional jobs, and
this is creating jobs for people with disability. The Information Society is also
generating new economic activities, and with them, new types of employment
that will be suited to many people with different types of disability. Thus the
consolidation of the Information Society will expand the range of work that
people with disability are able to do.

However, the benefits of these developments are not being shared equally
among people with disability. This is partly because, in order to be able to
benefit from these new employment opportunities, people must have a certain
level of training and education and the financial means to access then.
Furthermore, the very speed at which the new technologies are developing
may constitute another obstacle. For example, the transformation brought on
by the Internet from a text-based medium to a multimedia environment has
meant that people with visual disabilities can access web pages by using a
screen reader. However, people with post-locutive hearing disabilities, who
have no difficulty dealing with text-based web pages, now experience difficulty
when trying to access multimedia web pages that have not been adapted for
this kind of disability. Unless the accessibility requirements of these people are
taken into account, they will be locked out of the web, and will not be able to
use the Internet at work. We are only just beginning to realise the importance
of making the Internet accessible to all users and, currently, standards are
being drawn up which will guarantee true universal usability. These standards
will be extended to cover new developments and connection platforms, for
example to access the web from a car using a telephone or a walkman.

Another crucial factor will be guaranteeing the financial means for people with
disability to gain access to new technologies. Today, many disabled people do
not have the wherewithal to purchase the equipment necessary to connect to
the “digital community”. The so-called "digital divide" may only be bridged if
there is a genuine effort to ensure computer literacy among all citizens. It will
also be necessary to make sure that all citizens can acquire the necessary
computer equipment or, at least, have access to this equipment through, for
example, setting up centres for computer networking. For this to become
reality, the right telecommunications infrastructures will have to be put in
place.

The service sector constitutes another major source of employment

opportunities for people with disability. Not only does this sector employ an
increasing number of people in detriment to the industrial and agricultural
sectors, a growing number of workers are involved in the production, handling

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and transmission of information. The service sector requires good intellectual,
rather than physical qualifications, and this may offer tremendous
opportunities for people with physical or sensorial disabilities. Currently, many
industrial processes are guided and controlled by computers, which means that
people with disabilities may also work in these fields.

The labour situation of people with disability in Japan

Although there are a number of measures in place in order to facilitate employment for people
with disability, the real working opportunities for the majority of disabled people are still very
limited.

Japan has long enjoyed a much lower unemployment rate (between 1% and 2%) than other
developed countries. However, as a result of the recent, prolonged recession and the
restructuring of companies and industry in general which has lead to many changes in the
traditional working practises, the unemployment rate increased to 4.5% at the end of the
year 2000. This has had an adverse effect on the labour situation of the people with disability.
The government must now actively create employment for the growing number of
unemployed including those with disabilities.

Technological innovations focusing on microelectronics has lead to an increase in industrial

robotics and the automation of office work. These innovations have started to have a varying
influence on the labour situation. A great deal of the machinery is now less accessible to
people with disabilities, so they are increasingly susceptible to the negative impact of
technological innovation. However technological development has also brought with it some
advantages for the people with disability through the development of machinery and devices
which provide possibilities of working in tasks that were previously closed to the people with
disability. Amongst the future measures which may facilitate things for the people with
disability we can include the development of professional rehabilitation programmes, including
programmes for developing capacity in order to face the changes thrown up by technological
advances. It is, furthermore, necessary to continue researching into the positive use of
technology for the people with disability.

The number of workers in the industrial sector is set to continue declining as a result of the
prolonged recession, the restructuring of companies and the increase in labour costs. New
opportunities for employment for the people with disability will have to be found in the
tertiary sector. So we must make sure that they are provided with the necessary training in
co-ordination with the educational institutions and the employers. There is a lot of room for
improvement in the training opportunities for the people with disability and in the integration
of this kind of training with standard training programmes.

Ryosuke Matsui, Vice-president of R&D for the Asia Pacific region. Tokyo (Japan)

Moreover, other ways of generating employment must be pursued through the

Social Economy, local initiatives, and new activities relating to needs emerging
in our market that have yet to be covered. The development of the new
information and communications technologies has made it possible to work out
of our homes, a particular boon for people with reduced mobility. This new so-
called “tele-working” is precisely one of the most promising options for people
with disability, who are no longer constrained by the usual difficulties (mobility,
transport, accessibility, etc.) that limit their working options. Tele-working can
also be performed collectively in specially equipped areas (tele-working
centres), and this opens a range of possibilities for organising co-operatives
and non-profit organisations that can hire people with disability.

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New sources of employment are being targeted in the field of recycling and
other industries that protect the environment, in community services, tourism,
Internet services and activities that cover specific niches, and these all offer a
wealth of areas to develop employment for people with disability.

3.12. Tapping new opportunities

Recent improvements in training and the development of these new veins of

employment have had a positive impact on people with disability worldwide. In
the last few decades we have learned to focus on the abilities and potential of
people with disability, and this collective has found new opportunities while
society in general has been enriched by their contributions. During this period,
many widespread yet groundless beliefs about people with disability have been
questioned, and this has helped overthrow barriers that traditionally have kept
people with disability from being considered full-fledged members of society.
We now understand that adequate training, the proper adaptation of the
environment to accommodate a person’s disability and, above all, satisfactory
social organisation based on integration and cooperation all lead to being able
to take full advantage of the many benefits that people with disability can offer
society.

The advantages of fully tapping the potential of people with disability are
considerable. From the axiological perspective, allowing each member of the
human family to contribute to society helps us ascend the ladder of evolution
to create the more advanced society we all aspire to. This is true from the
productive point of view because the integration and human cooperation model
allows greater independence and autonomy for people with disability and their
families, through providing many disabled people with the opportunity of a
dignified job in keeping with their limitations. The psychological and material
benefits that this provides are clear, and this in turn benefits society as a
whole.

This conviction must act as the motor for change within our value system.
Once we, as individuals and as members of society, can accept that the
differences and limitations of people with disability do not in any way alter the
essence of equality and dignity, nor diminish the rights of this collective, we
will have made a quantum leap towards a way of life genuinely based on
solidarity.

4. SOCIAL PROTECTION AND SOCIAL SERVICES

The United Nations’ Declaration on the Rights of Disabled Persons (1975)

states that people with disability have the same unalienable rights as everyone
else, and that these include the right to security itself and to medical,
psychological and functional treatment; the right to Social Security; the right
to have their specific needs taken into account in economic and social plans

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and the right to be informed of their rights.

Laws have been passed that specifically protect the rights of people with
disability, but coverage is not equal in all countries. It is precisely in the areas
of medical attention and social security where protection is most variable.

In many places of the world, people with certain types of disability do not
receive the care they need. This is partially due to the fact that the disabled do
not constitute a homogeneous group, but have diverse needs and require very
diverse services. Our social protection systems are not necessarily equipped to
deal with all situations. Furthermore, even when many disabled people share
similar needs, their access to the services available is unequal, just as is the
quality of the services themselves. Sadly, in too many cases, people with
disability become the victims of discrimination in many societies, and the
seriousness of this discrimination or inadequate attention to their needs is
heightened in the less developed countries.

Logically, each society has its own capacity to levy taxes to raise the funds
needed to meet the community’s needs. In countries with the least capacity, it
may simply be impossible to offer the population adequate social services.
While this is the case of countries where large segments of the population live
below the poverty line, it is also the case of countries where the lack of
satisfactory social attention is due to other factors, generally to political
policies. Some governments that have not been democratically elected relegate
the question of attention to social groups at risk of exclusion to a secondary
position. In other countries, social services may not be available because the
laws providing them have not been put in place. Finally, sometimes care is
inadequate because the procedures established to provide it do not take into
account the real needs of the target group, or when policies are set and
programmes designed without consulting the ultimate users. Often these
policies ignore the fact that the needs of disabled people are not always the
same, but in constant flux. When this happens, the target groups are just
passive spectators to the process. The problem is compounded in the many
countries where social services are provided in a very fragmented way, leading
to inefficiency and inflexibility in the assignation of resources. For these
reasons, some needs go unattended, while in other instances, there is
insufficient funding to provide the programmes required.

Another obstacle to the provision of care may be physical, such as

geographical isolation: the social service centres may be located in areas of
difficult access for many people, for example, those with physical disabilities,
the elderly, etc.

There are, therefore, many factors that obstruct the creation of an adequate
network for social protection. We must find ways to overcome these barriers
to guarantee satisfactory services, including access to quality medical
attention, and to the general protection which should be guaranteed to all.

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4.1. Social Security as an instrument of social cohesion

Social Security is an important instrument to promote social cohesion, as its

aim is to protect all citizens throughout their lives from various contingencies
such as illness, unemployment, maternity, family responsibilities, old age,
disability, etc.

However, in many countries, the coverage provided by the Social Security

system is far from universal, and many collectives (those working in
agricultural or the informal sectors, the self-employed, the unemployed...)
receive no benefits. A plethora of insurance schemes, each one with its own
financing and protection programme, vie for the citizens’ custom and this
accentuates inequalities in coverage.

Inequality in this field is not exclusive to underdeveloped or developing

countries. Notorious imbalances in the organisation and delivery of these
services have also been denounced in the most developed countries. In some
of these countries, the Social Security system is structured in such a way that
it can be really difficult for people with disability to earn enough money to pay
their contributions and conserve their rights to a pension.

A country’s pension system is essential to guarantee the welfare of its citizens

with disability. However, many disabled people find that even after working
and paying their contributions, they have greater difficulty than other workers
in reaching the levels necessary to receive a pension. Certain legal
requirements can act as obstacles if, for example, workers must demonstrate
that the onset of the disability was prior to the moment when they started to
pay their contributions, or if they have to prove that they are suffering from
injuries that did not exist when they started working or that these injuries have
worsened, etc. People with disability only ask to be treated like any other
citizen, and this burden of proof is often unjustifiable and adds insurmountable
obstacles to getting adequate coverage. The remedy for these instances is to
enforce the general rule that applies to all workers, and establish that a worker
is eligible for compensation the moment a disability is acquired. Why should
people with disability be treated differently? Furthermore, the disabled are
sometimes excluded from facilities that other workers enjoy in certain Social
Security regimes. Early retirement is frequent among workers in certain
sectors where the tasks to be carried out involve hardships. Miners, fishermen,
airlines workers etc., all enjoy a significant reduction in the number of years
they must work to be eligible for a pension. However, normally people with
disability enjoy no such regime, even though working with their disability
subjects them to hardships, or when their disability means they will be working
fewer years.

There is another problem in that a large segment of the disabled population

never joins the work force because of the seriousness of their disability. When
these people and their families are protected by Social Security, they usually
receive a limited non-contributory pension that is lower and with poorer

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coverage than contributory disability pensions covering similar cases. People in
this situation should be entitled to access to the contributory system,
independently of their working capacity or professional activity.

In many cases legislation is too restrictive or only provides for incomplete

coverage. People with disability may be barred from access to certain facilities
that are only available when a certain level of disability is reached, even when
the person has no access to remunerated work. In some cases people are
afraid to accept part-time work because this may mean they will lose their
allowance for disabled children or that their pension rights will be reduced. It
would be much more realistic to introduce favourable mechanisms so that
people could receive non-contributory benefits while at the same time
undertake a limited form of remunerated work.

4.2. Social services, fundamental for the welfare of individuals and

society

Social services help ensure the welfare of individual citizens, while they foment
social integration and the development of society as a whole. Their success is
proportional to the way they are deployed to meet the needs of individuals and
recognised social groups. The concept behind our social services should be
broad to include such basic needs as nutrition, safe drinking water, housing,
public health, education, assistance in finding employment, transport, security
and participation in the social and cultural life of the community. Special
services must be devised to meet the needs of collectives with problems
derived from age, or who are unable to work for various reasons. Social
services must also protect the family in times of illness, maternity leave and
other circumstances.

Social services have been designed to perform many different functions: some
palliate adverse circumstances, and others are meant to reverse them.
Sometimes social services can act as compensation for differences between
individuals and groups, while others aim to promote the development of the
individual, the community and society at large. Naturally, national contexts
and cultures differ but, generally speaking, when social services are inadequate
that is because the problems they are meant to address surpass their scope, or
because they do not meet the necessary quality standards.

As states in the Report of the Seminar on the means to be guaranteed to

population groups who are under-privileged in their access to social services
(Bangkok, Thailand, 2nd to 6th November 1998), most social services systems
are unsatisfactory for a vast proportion of the population. There are still
millions of people who do not receive adequate social services if they receive
any at all. Manifold factors are to blame. Many countries lack the necessary
resources to provide adequate social services; in others, social programmes
are not priorities when resources are distributed. In some instances, no
mechanisms or processes are foreseen to articulate the sometimes divergent
interests of different segments of the population. In other words, there are no

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viable ways to allow the different social agents to collaborate amongst
themselves.

In other cases, to the deficiencies of the social services, we must add civil
strife, financial crises and natural disasters, all of which undermine the
system’s efficiency and effectiveness. Usually the victims of these situations
are the population’s most vulnerable and underprivileged groups.

People with disability still suffer notorious discrimination when it comes to

satisfying their specific needs. Despite cultural nuances that accompany a
society’s degree of social development, discrimination is blatant. Providing
satisfactory Social Security coverage for all citizens requires social forecasting,
and taking into consideration the diversity and plurality not just of the
individual, but also of the circumstances each one of us may eventually be
subject to. Sharing information and experiences and careful planning activities
are steps that would help initiate much needed reform.

5. EXPECTATIONS FOR TECHNOLOGICAL CHANGE AND SCIENTIFIC

AND MEDICAL ADVANCES

5.1. Innovation, design for all and user participation

The future of people with disability and their inclusion in a society without
barriers and limitations will be greatly influenced by scientific and technological
developments, and their application to everyday life. These, together with
medical advances, will open new horizons that will have a major impact on the
quality of life of people with disability and their families, and will be a driving
force behind the inclusion of people with disability in labour, social and cultural
life. Furthermore, people with disability are not the only ones who will benefit
from these innovations: new technologies will have an important impact on the
quality of life of the elderly and, most particularly, of people who acquire
disabilities in old age.

For these reasons, the now well-known Americans with Disabilities Act (ADA)
calls for a budget to cover all processes of technological development and
application. This law is paradigmatic in many aspects. Its intent is to act as a
vehicle to translate the concept of accessibility into reality, by ensuring that
technology is easy to use and understand from the perspectives of design and
practical applications. The ADA establishes measures to ensure that technology
truly contributes to improving the quality of life of the user by enhancing the
man/machine interface, integrating tailor-made services and solutions and
continually improving the control systems used. Tangible bi-products of the
new technologies should be increased freedom of movement, transport and
communications which will all, in turn, lead to fuller social, cultural and labour
integration.

Particular advances are being made in the field of domotics and this, in turn, is

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enhancing the maintenance, ergonomic, modularity, and functionality features
of assistive technology devices that can now be personalised and adapted to
the circumstances and requirements of the user in his or her home. Other
important changes are taking place in the fields of education, vocational
training, preparation for employment and integration in the social
environment. Real strides have been made in adapting environments to permit
mobility, and in creating spaces where people with disability can participate in
leisure and cultural activities. Technological advances are, further, being
applied to streamline training processes, not only for people with disability, but
for the professionals who will work with them in rehabilitation and social
integration programmes.

Regulating and standardising bodies are playing an active role in promoting

universal access, and the Public Administration is beginning to take on board
the idea that access must become the universally applied norm. However,
these advances will only be successful if people with disability are allowed to
participate closely in their design and implementation. The final objective
must be to create a design for all, and this can only be achieved if the ultimate
users participate in the design and development stages and are closely
involved in the implementation and application of the results. It is only when
this happens that the new technologies will be a decisive instrument at the
service of promoting the inclusion of people with disability in society. It is only
then that they will be able to open new markets.

The steady implementation of new technologies in day-to-day affairs in the

areas of labour, culture and leisure, and the fruits expected from the
consolidation of the Information Society are pushing back the limits of our
horizons. Thanks to on-going innovation, we will be able to create spaces
where all people can participate in social and productive processes, and where
everyone will have access to the new businesses and opportunities that will be
created once the design for all concept takes hold. However, poised as we are
at the start of the new century, we must be ever vigilant to make sure that
innovation is always at the service of social integration, least we run the risk of
creating new barriers that only lead to further exclusion.

In developed societies, innovative technologies are being used not only to

improve a country’s standards of welfare, but to increase its competitive edge
as well, through new opportunities for greater social cohesion and integration.
The new vistas offered by the interactive technologies that make it possible to
transcend the usual boundaries of space and time, will open spaces where
everyone will be able to participate in the social dialogue. This will allow us to
listen to the opinions and expectations of all those who wish to make their
voices heard in designing new, collective projects.

Once again, we must make sure that the new technological applications make
the Information Society a place for inclusion and participation. The dawning
Interactive Society must be one where a person’s knowledge, rather than her
technical or technological capacity, becomes the determining factor.

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Knowledge, furthermore, resides exclusively in the individual and in her desire
to make a daily contribution to the collective intelligence, which, in turn, will
only reach its full potential when it is used to enhance the solidarity and
welfare of all communities.

Our collective welfare will depend, above all, on the development of our
collective intelligence, without which the Information Society would lose much
of its potential. Our capacity to pool this intelligence will depend on how well
we are able to learn and teach, and how well we are able to improve our
capacity for problem analysis, and deploy our creativity to devise effective and
efficient solutions. This, in turn, will determine how well the users of the new
networks are able to find new solutions to old problems. It will, above all,
determine how well we are able to create new opportunities and open new
horizons to satisfy personal interests.

If our Information Society is to be characterised by social cohesion and not

constitute yet another route to exclusion and second class citizenship, all public
bodies and financial and social entities, and indeed society as a whole, must be
committed to this goal. Legislation will have to be passed to make accessibility
mandatory, and technical, industrial and social projects, both public and
private, will have to be conducted to make sure that people with disability
benefit from the concept of design for all. If this happens, technological
advances and their applications, together with the information and
communications technologies will generate new opportunities for integration,
employment and training, and not erect yet another set of barriers to
accentuate exclusion and discrimination.

Training for all, and specifically for people with disability, in the use of the new
technologies will be the cornerstone to achieving this aim. It will also be
necessary to promote measures that enhance access to employment and equal
opportunities for people with disability in the new professions that are being
created through new social and business initiatives. The concept of design for
all is key in this endeavour. Full support must, therefore, be given to initiatives
directed at developing and implementing assistive technologies, and all other
measures that facilitate accessibility, the first step to personal development
and striving for new horizons.

The private sector must begin to recognise people with disability and the
elderly as comprising potential markets, with special needs that must be
addressed. Not only do these demographic segments represent a growing part
of the labour force, as people with disability gradually integrate into the
working world, they will soon represent a strong consumer segment, with
growing purchasing power. Forecasts estimate that by the year 2010, 25% of
the money in circulation will be in the hands of the elderly, precisely a
collective prone to late-onset disabilities.

Experience shows an interesting benefit for businesses that incorporate the

design for all concept in their products. Not only do they satisfy the demands

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of a growing market segment, the public in general perceives these products
as more user-friendly, higher quality and more exclusive than their
conventional counterparts. It is, therefore, in the interest of businesses
themselves to evaluate all their products and services from the perspective of
accessibility to all users, and design out any form of discrimination or exclusion
that may arise from their use.

Other initiatives are being developed specifically to close the digital gap. An
example is the Digital Opportunity initiative conducted in the final stages of the
last American electoral campaign. Its aim was to make society aware that
members with disability have greater difficulty in accessing the advantages and
applications of the Interactive Technologies. The specific objectives of this
campaign are to reduce these differences through positive action and
coordination between public and private initiatives.

Programmes spearheaded by private businesses, educational institutions and

social action groups, supported in part with public funds, intend to go beyond
the mere adaptation of tools and procedures, to make people with disability
the true heirs of the advantages of digital technology. Assistive technologies
are being developed, and the design for all concept has been incorporated to
improve the functionality and quality of products and services, to ultimately
allow equal access to all potential users. Not only will this help overcome
technical and operational discrimination in the use of these products and
services, it will serve to place on the market products and solutions that are
more competitive, multifunctional and attractive to all consumers.

As this first step is being concluded, great care must be taken to implement
the good practices, standards and procedures necessary to eliminate any
existing legal restrictions or previous regulations that affect the acquisition and
provision of accessible services that might destroy the effects of design for all.
Above all, we need to overcome the social limitations that conform to the
maxim that uniformity is better than diversity, because these constitute one of
the major barriers to the integration of people with disability.

Strong foundations must be laid so the new technologies can truly promote the
participation of people with disability in the development of collective
intelligence. When we promote universal access, what we are really doing is
making it possible to tap the contribution that each and every member of
society has to offer, without excluding anyone. Achieving this goal will be a
step towards learning to manage personal development throughout life, with
the implications that this has in maintaining employment possibilities for
everyone. Keeping up with the ever-evolving requirements of today’s
workplace is such a challenge, that at a moment’s notice, anyone may find that
they have a functional disability that impedes participation in active life. The
sobering fact is that at some point in life many of us will have first hand
experience of what it is like to be on the other side of the digital gap.

For these reasons, programmes like those launched in the most advanced

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countries are more than a simple gesture in favour of people with disability.
They are initiatives to prevent any of us from falling victim to unfounded social
prejudices that would prevent us all from contributing to society’s collective
intelligence with our ideas and hard work. However, if we can ensure a
network where everyone has access, these ideas will be renewed and enriched
with a sense of solidarity and striving towards the common good. We must
make this society without exclusion and discrimination possible, lest we
condemn ourselves to an impoverished society which is an affront to the
human dignity of those who are excluded. Everything must be done to prevent
this kind of society from prospering. If it does, we will be closing the door to
new applications and services conceived not just for a small sector of the
market, but that have the quality and versatility to adapt to the needs of each
client. There is a genuine gap in the market where competitive leaders can
step in with services and products that go beyond the worn formulae of
uniformity and exclusion. Diversity and inclusion represent the new frontiers
which will be the differentiating mark of the most advanced products and
services called to be the leaders in tomorrow’s market.

In order to develop these principles, measures must be taken in various areas:

the first is to update norms and standardisation processes to promote universal
access; the next is to develop projects which will get as many people as
possible into the labour market and allow them to fine-tuning their marketable
skills throughout life; finally, every measure must be taken to promote and
consolidate the design for all concept and the application of assistive
technologies. Specifically, the list of priorities should include:

a) Public Administrations should review their procurement practices and

conditions to include the concept of universal access, so that our
Governments can be the first to demand that all the goods and
services they consume are universally accessible or can be adapted
to make them so;

b) With the collaboration of the organisations representing people with

disability, we must write guidelines for the procurement of accessible
materials for the work place and for educational purposes; with the
implementation of these two first recommendations the standard can
be set to promote good practices and in the public, private and non-
profit sectors;

c) Catalogues of the specific needs for each type of disability must be

compiled, updated and made available on line to serve as a
reference for people designing goods and services;

d) Fora must be organised to discuss ways to adapt technological

solutions to the needs and demands of each type of disability. These
fora should ultimately be made open to everyone by being posted on
internet portals specialised in the field of disability in the public or
private domains. They should include discussion about access to the

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 labour market, job-searching techniques for people with special
needs, life-long learning through the use of virtual educational
systems, etc.;

e) The technologies being developed must allow our Governments to be

fully accessible to people with disability when they go “on-line”; once
again, these public initiatives can serve as a showcase of good
practices to promote social inclusion with the full accessibility of all
portals and web sites; to this end, the dissemination of initiatives
like the WAI that focus on the development of web site accessibility
will play a decisive role.

People with disability must take the initiate themselves to complement these
proposals with specific activities if they are to be fully effective. Foremost is the
need to:

•compile a full compendium of the needs to be satisfied by the new

information and communication technologies;

•carry out surveys in as wide a range of collectives as possible to

determine the degree of penetration of current innovative services
and products;

•estimate to what extent quality of life can be ameliorated with the

implementation of innovations currently on the market or soon to
be launched.

What is more, the private firms and institutions working in the development of
innovative technologies must begin to incorporate new criteria to evaluate their
own activities, to make sure they are upholding the ideal of an Information
Society for All. If the new Information Society is to be one of inclusion, very
special attention must be paid to groups at risk of being left behind. Disability
should be a priority, and all projects being designed should incorporate from
the very beginning measures to ensure their full accessibility, and tools that
will allow all citizens to use them fully. Projects should focus on helping people
with disability access not only the labour market, but also the training
necessary to become employed. These measures must adapt to the
requirements of every worker. It is only if these factors are taken into account
at the inception of a project that the Information Society will embrace all
citizens, without creating new obstacles for integration into society and the
workplace.

Tools must be devised that will make it possible to evaluate all business
initiatives from the following perspectives:

a)Is it user-friendly for the immediate users who are disabled?

b)Can these applications be combined with other initiatives designed to

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 promote the integration of people with disability?

c)Does this initiative include procedures that will facilitate the

incorporation of people with disability into the labour force and
their participation in in-house training?

d)Does this initiate incorporate good practices that ensure accessibility?

In order to meet these criteria, every business will have to evaluate whether
its products and services are accessible to all users, and whether they are free
of any element that might discriminate against a disabled user. If they do not
comply, complementary measures will have to be identified to guarantee
accessibility. Companies must, furthermore, be asked to evaluate whether
their new business initiatives enhance the access of people with disability to
the workplace, and to specify the number of jobs for the disabled they plan to
create at any given moment and in the future. Businesses must be required to
evaluate whether they can implement new forms of employment, such as
“tele-working” out of the home, that are appropriate ways for people with
disability to join the work force. Ultimately, companies must evaluate whether
their business plans include measures for all their employees, disabled and
non-disabled alike, to participate in professional development programmes and
update and upgrade their skills; if necessary, these plans should include
formats specifically designed for people with disability, such as distance
learning or other accessible tools.

It is up to users with disability to inform the operators and manufacturers of

goods and services of the features they require, and those they would
reasonably expect to find in future developments. Simultaneously, it is
paramount to make all the necessary changes in norms and standards to
ensure total accessibility. We know only too well that unless there is a
conscientious effort to bring on board and co-ordinate business and
educational initiatives, the different social agents and players in Civil Society
will all go their separates ways, and disabled users will never be able to
participate actively in the market because of the limitations we are all too
familiar with.

All actions undertaken in this area must be adequately coordinated to include

all the users with special needs who, along with the rest of us, hope to reap
the fruits promised by the Learning Society. Every citizen must have the right
to learn through cooperation and interaction with others. Every person must be
given the chance to share experiences and discuss expectations; these are
precisely the things that these new networks and applications are all about. If
we proceed with care and guarantee accessibility, the new Knowledge Society
will be one based on solidarity, and it will benefit from the contribution of each
and every one of its members.

Among the many challenges ahead is the need to adapt existing legislation to
the new reality created by technological development, to ensure accessibility to

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all people. Priority must be given to initiatives that incorporate the design for
all concept and, here, the end users’ input must necessarily play an important
role. This means that the technological solutions as yet to be defined must be
based on the needs and expectations of their ultimate users, and these people
must be given the wherewithal to make their voices heard. Today, little by
little, obstacles to access are, nonetheless, being overcome, as manufacturers
are following the lead of Administrations that have put accessibility on their
agendas and have incorporated into their own good practices the exclusive
purchase of equipment and services that are accessible. These good practices
are laying the groundwork for protocols that look beyond “usability”, and try to
elucidate the meaning of accessibility from a broader perspective. To gain
insight into these issues, designers must consult people with disability and
listen to their needs and expectations.

However, we may fall short of this goal unless we proceed in an orderly

fashion. We must implement procedures that will allow the users of the goods
and services to express concerns about their quality and user-friendliness.
Crucial to this part of the process is the dissemination of the information
gathered from the users so that it can be applied to R&D. With this type of
collaboration between designers, manufacturers and end-users, due attention
can be paid to training the users properly and divulging existing good practices
and positive results. All of these measures will contribute to promoting more
in-depth knowledge about the information and communications technologies.

The driving force behind these changes is the realisation that only user
satisfaction leads to the success of a product or service; and, in the case of the
user with disability, it is she who best understands her own needs and can give
invaluable advice about the requirements of each product and service.
Rehabilitation technology has been a pioneer in seeking the user’s
collaboration and opinions, and international standards, such as the UN’s
Standard Rules, or those derived from the Treaty of Amsterdam (EU), have
been instrumental in facilitating constructive cooperation.

Any project in this area must be built on the principles that put all the players
are on equal footing. User organisations must take the lead; all participants
must be remunerated equally; qualified personnel must have unrestricted
access. Finally, from its inception, the process must be carefully planned with
the involvement of people with disability. Each task involved must be clearly
identified and described, with an indication of the people assigned to complete
it who may be members of the project team, or outsourced. Once it is
completed, a project must be evaluated, and checked against specific
indicators to measure its success.

While these pilot cooperation projects between suppliers and users are
extremely important, nevertheless, user participation can only be effective if
the associations that represent people with disability are firmly committed to
the process. Their work with manufacturers and service providers should be
articulated by agreements that set out each party’s role. Costs and

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responsibilities can be shared within the framework of institutional platforms in
charge of programming activities, training users and promoting R&D initiatives.
With these measures, we can turn the concept of design for all into something
that is more than a passing fad; we can help it take shape in plans,
programmes and specific actions. By extrapolating achievements to other
public and private initiatives that are, at this very moment, constructing the
Interactive Age, we can make sure that we are building an environment that
foments the participation of all individuals or groups, regardless of their
abilities or disabilities.

These efforts are helping to lay the foundation for an Interactive Society in
which people with disability can be active participants and not merely passive
objects of assistance and palliative measures that fail to empower the
individual to act on his own. These ideas have already been put forward by the
European Disability Forum (EDF) in its Manifesto on the Information Society
and Disability, that examined the educational, employment, legislative and
market aspects of disability, in connection with the issues of utility,
accessibility and availability. In its review, the EDF warmly welcomes initiatives
like e-Europe, while recalling that adequate funds need to be earmarked to
promote the design for all concept, if the digital gap is to be stemmed and
nobody left behind. Once the details of the European Action Plan became
public, the EDF urged that the issue of disability be included in all programmes,
not only those that deal specifically with learning and qualifications, in the
assurance that improving the lot of people with disability will help bring about
a society that is enriched by the diversity of its members.

Recently, to push the issue of universal access forward in the Information

Society, the EDF proposed specific actions for each of the partial initiatives
included in e-Europe 2. The EDF’s intention is for people with disability
themselves to be able to make positive contributions to policies and
programmes developed to prevent exclusion. They want to prevent projects in
course from establishing only partial solutions, and falling short of the demand
for diversification, design for all and the full implementation of assistive
technologies.

Within this climate of change, we must also highlight initiatives from the USA
and Canada in pursuit of new frontiers in an effort to close the digital gap
separating people with disability when it comes to using the new technologies.

5.2. Medical advances and disability

As Dr. Gro Harlem Brundtland, Director General of the WHO, has pointed out
“the health and wellbeing of people throughout the world depend, in a critical
way, on the performance of the health systems attending them”. Precisely to
measure the performance of health systems throughout the world, the World
Health Organisation compiled a pioneer analysis in its Report on Health in the

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World 2001. The following parameters were taken into consideration in
drawing up the report:

1The overall health level of the population.

2Inequalities or imbalances within the population.

3The health system's capacity to respond. (The combination between the

patient's satisfaction and the more or less correct functioning of the
system).

4The distribution of the response capacity within the population. (How

people in different economic levels perceive the healthcare they
receive).

5The distribution of the financial costs of the health system within the
population (in other words, who finances the system).

With these indicators, the evaluation looks at different variables, such as each
health system’s level of response to the requirements of people with different
kinds of disabilities. The countries obtaining the best results are those whose
systems have a greater capacity to address the healthcare needs of all their
citizens in accordance with the principles of justice and equality.

On the basis of these criteria, the report showed, for example, that France
provides the best healthcare, followed by Italy, Oman, Austria and Japan.
Likewise, in comparison with other countries, the health system of the USA
spends the greatest proportion of the gross domestic product on health, but
only comes in 37th out of 191 countries. However, the United Kingdom, which
spends only 6% of its GDP on health services, comes in 18th and various small
countries, such as San Marino, Andorra, Malta and Singapore are at the top of
the list.

This report puts the spotlight on the problems affecting health systems
throughout the world and, highlights the most vulnerable groups: the elderly,
people with disability and citizens with low incomes, etc.

The report states that there are large variations in the deployment of health
services, even among countries with similar levels of income and health costs.
This means that health systems can be improved, and with them the health of
the population. Dr. Christopher Murray states that, “Although there have been
significant advances in recent decades, practically all countries fail to use their
resources to the full. This leads to a large number of foreseeable deaths and
disabilities, unnecessary suffering and the denial of the individual's basic health
rights.”

According to the report, the problems in the health systems are more serious
for the poor who, furthermore, when their health fails incur financial difficulties

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because they have no financial protection against illness. Countries should
expand their health insurance systems to cover as great a number of the
population as possible.

In many countries, general advances in health benefit those who are already
the healthiest. It is not enough to protect or improve the health of the
population if inequalities are not reduced at the same time. The health system
must prioritise actions which benefit the most vulnerable members of society
because the objective of good health is twofold: to reach the highest possible
average (the goodness of the system), and the least possible differences
between individuals and groups (justice).

When health systems are not working satisfactorily, that is, when medical
services and advances are not used to improve the standard of health of all
members of society without distinction and, above all, to support those most in
need, these very advances may become a factor of discrimination. This
situation only accentuates the existing gap between society’s different strata.
It is only right that more attention be paid to those most in need, and that
medicine and medical progress should be a means of preventing disability from
being an obstacle to living a full life within society.

5.3. Medicine, society and disability

It goes without saying that medical advances have played an enormous role in
the prevention and treatment of disabilities and in improving the quality of life
of people with disability. Thanks to some of these advances, certain illnesses
that have always led to disability no longer do so. For example, up until
relatively recently, people affected by the AIDS virus were condemned to a
progressive physical deterioration that, after a period of severe disability,
eventually led to death. Today medical treatment allows many AIDS sufferers
to lead a perfectly normal social and professional life. Medicine provides
instrumental, orthopaedic, prosthetic, pharmacological and/or therapeutic care,
which allows people with disabilities to overcome or, at least, compensate for
many of their limitations and to lead a more or less independent and active
life.

However, the relationship between medical advances and disability is complex.

Medical developments may also be behind a general rise in the incidence of
disability because they are lengthening the overall life expectancy and
improving the survival rate of people with serious disabilities. There is an
additional fear that advances in certain areas of medicine may increase the
rejection factor and discrimination towards people who, for one reason or
another, suffer from certain kinds of disabilities. This is the case of medical
advances related to the prenatal detection of possible malformations,
congenital abnormalities or genetically determined diseases. This aspect is of
vital importance. Despite the fact that recent surveys seem to suggest that
there is a change afoot in the social perception of physical, mental or sensorial

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disabilities, “disability” is still synonymous with “impediment”, “uselessness”
and “incapacity” for leading a normal life. Society continues to automatically
assume that people with disability are incapable of leading normal lives and
continues to label them as “invalids”. This is one of the greatest obstacles to
overcome.

As all other social elements, science and technology are developed within a
specific cultural, economic, ethical and moral framework. Scientific and
technological results are used in a multitude of contexts that ultimately define
the concept of health, illness or normality. They thus play a decisive role in
how medical knowledge is used and applied, and set the agenda for the
advances that are now taking place. For example, in the field of human
genetics, solutions and adequate answers will be sought depending on how the
problems are defined. It is, therefore, extremely important to avoid conceptual
errors which will lead to inadequate solutions to the different problems. It is
crucial for society not to make errors in its belief structure with regard to
health, illness or disability.

Having arrived at this point, we begin to grasp the magnitude of the problem.
However, it is extremely difficult to apply any one set of guidelines to explain
and define what disability actually is. Traditionally, disability has been defined
according to two different models: the medical model and the social model.

In the medical model, disability is seen as a problem or defect that in inherent

in the person, caused by an illness or health problem. In this model, disability
is perceived as a deviation from the norm. The objects of medicine with
respect to disability are prevention and cure, or adaptation with aids, care and
rehabilitation. From the political standpoint the object would be to reform
health policies.

As an illustration, many predictive tests or cures that are used in genetics

centre exclusively on the individual and his/her presumed limitations. They
obey medical assessment criteria alone and fail to take into account the effects
and interrelationships between the individual’s social environment and his/her
biological reality. Therefore they only offer medical solutions (prevention, cure
and adaptation) without contemplating social solutions such as acceptance of
differences, equal rights, etc. Although the scientist is not the only professional
responsible for offering social solutions, no scientist, whose work has social
consequences, can afford to ignore them.

The social model of disability is an ideological model based on attitudes. In this

model, disability does not only derive from a condition within the person, but
from a whole series of factors that include the social environment.
Consequently, any response to the problem requires social action. Society as a
whole must undertake the environmental modifications necessary so that
people with disability can fit in as full members. Social change is needed, and
in political spheres the issue of disability must be seen as one of human rights,
similar to those of gender equality and sexual choice. In many cases this will

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mean that standards and regulations will have to be changed or overturned.

The most important scientific and political development with respect to progress for people
with disability in the last three decades consists in the acceptance of a new model of
disability. Currently the concept of disability is poly-dimensional and interactive, and disability
cannot be reduced to purely a biomedical phenomenon but is understood as a result of a
complex interaction between the person and his/her environment.

This change in the conceptual paradigm, which is often called the “social model of disability”,
has opened many doors to a wide range of scientific and political developments. When
disability is understood not only as a question of morbidity that can be explained in medical
terms, but also as a question of the general functioning of the human being, made up of
physical, social and even attitudinal environments, the consequences for the future of people
with disability are radically different.

Jerome E. Bickenbach, Queen’s University. Kingston, Ontario, (Canada)

This conceptual problem exists because all biological reality can be formulated
from both points of view: as a medical issue or as a social issue and a problem
of human rights. For example, in the United Kingdom in the 19th Century,
women were considered to be too dependent and emotionally fragile to have
the right to vote, own property or hold custody over their own children -
medical model. Later, inequality between men and women was overruled, and
equality between the sexes established - social model. Other groups such as
homosexuals and bisexuals are facing the same kind of problems today. They
are fighting to keep from being categorised under a medical model that
prevents them from being considered “normal”; they want to be treated
according to a social model that respects diversity and equal rights. People
with disability are also trying to avoid being labelled as abnormal, and are
fighting to be considered part of the diverse pool of humanity.

There would be no social hostility towards people with disability if we were

conscious of the fact that everybody is exposed to the possibility of a radical
change in his/her relationship with the world, for example, as result of war, an
accident or an illness.

The problem is not so much in the disability itself, but in all that surrounds it,
which is precisely what determines the incapacity of a person with disability to
interact normally. In fact, it is the environment that determines the
impediment. Since cities, streets, transport systems, work centres etc., are not
conceived to include disabled citizens, then these people cannot travel or work
even though they are perfectly capable of doing so.

Disability should not be seen as a problem that only affects people with
disability and their immediate surroundings. Disability concerns all of society,
because the legislative measures and educational and general services that
must be put in place in order to promote the total integration of people with
disability concern us all.

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In the field of disability, psychological studies have shown how a person’s
environment can have a positive or negative impact on the personal and social
development of the individual affected by disability. The environment thus has
a direct impact on her capacity to work, for example.

Disability is often accompanied by a sense of inferiority and social

discrimination. What is really serious about this problem is that its origin is not
within the individual himself but within the group, or the rest of society.
Negative attitudes and prejudices manifest themselves in myriad ways and
places, from the school to the workplace. Sometimes they are camouflaged in
medical terminology, educational jargon, psychological tests or even an
exaggerated paternalistic form of protection.

In order to change the social image that people with disability command, and
indeed, in order to help many people with disability change the image they
have of themselves, it is important to value the person as an individual. It is
necessary to adjust processes to the individual, respecting every person’s pace
in productive or training activities, taking into account everybody’s particular
needs. It is also important to insist that people with disability take an active
role and participate in society by contributing with their individual abilities. As
they do this, people with disability will become more aware of their own reality
and understand, just like everybody else, how best to take advantage of their
own capacities, and how best to compensate for their shortcomings.

The challenge we face for the future is how to reflect back to people with
disability the image that is rightly theirs. That is, that they are people who,
with the right kind of support, can integrate fully into society according to their
individual capacities and abilities. Society as a whole must undergo a deep
transformation in this process.

It is very likely that since birth, the child born with a disability will follow a
different route from that of a child who is born without, and this will affect the
way she develops abilities and intellectual and motor-sensorial skills. However,
just as with any other person, the culmination of this person’s development
and training will be influenced by many different factors: her psychosomatic
constitution, her parents’ level of education, her social environment and other
external factors that will either have a positive or negative impact on the
individual. If this person’s circumstances favour the development of all of her
potential capacities, at the end of the day, the individual will not only learn to
be independent and to live within society, but she will also be capable of
generating and transmitting other capacities.

5.4. Genetics and the discovery of the “Book of Life”

Scientific and medical expectations are increasing at a dizzying pace, especially

since the human genome has been unravelled, and the scientific community

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claimed to be in possession of the key to life which would make it possible to
develop remedies and therapies for many of the ills suffered by humankind.

The Human Genome Project heralded the arrival of a new era in genetic
research. All necessary information for the creation of a human being is
contained within the human genome, and the distortion of this genome is the
cause of many dysfunctions and illnesses. For example, Down’s syndrome is
caused by an alteration of the phenotype of the 21st chromosome. The first
chapter of the “Book of Life” was opened when the complete sequence of the
human genome was mapped, which is the stage we have reached so far.
However, this is just the beginning of our quest. The most difficult stage will be
to interpret the sequence, to know how to “read” the codes and determine how
the genome works, how each element interrelates with others and how they
interact with each other.

While currently scientists are deciphered the complete genome of a growing

number of organisms, including in the not too distant future that of man,
research is moving in the direction of the branch of science that studies
proteomics, or the set of proteins which are reflected in a genome. Many of the
enigmas science faces are found in the structure and the function of proteins,
and the interaction between these proteins and their modifications. In other
words, before the scientific community can decipher the enormous amount of
information uncovered after sequencing the human genome, it needs to
understand, first of all, much more about proteins. This is extraordinarily
complex since a proteoma is a highly dynamic element. Its components vary in
each organism, tissue or cell as a consequence of changes in the environment,
stress, the administration of drugs, the physiological state, etc. These changes
can also be the result of the way the proteins interact in order to form
macromolecular complexes. These variations considerably increase the number
of proteins present at any given time, which, in turn, makes it much more
difficult to identify complete maps of proteins. However, unravelling these
mysteries will give us the key to determining the biological function that the
proteins perform and their more than possible implication in the development
of serious illnesses such as Alzheimer’s disease.

Factors such as our current potential for computation and new bio-computing
tools, together with an unprecedented refinement of analytical techniques,
mean that, in the not too distant future, we will have at our disposal hitherto
unimaginable possibilities. It is through studies in genetics that we will be able
to eradicate illnesses. We will be able to detect an individual’s predisposition to
certain diseases and tailor-make therapies and drugs without adverse
reactions. It will be possible to ensure longevity and replicate organs. Prenatal
diagnosis will allow us to unravel the genetic code at a very early stage of
pregnancy, which may well mean that many of the cases in which an alteration
is detected will be voluntarily terminated. Furthermore, genetic manipulation
may allow us to reduce certain of the phenotypic characteristics associated
with some genetic alterations. It will help us combat cancer, congenital
malformations, muscular dystrophy, etc. We will also be able to act on toxic

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agents, for example through the development of pharmacological therapies to
prevent many alternations, or, at least, to improve the quality of life of people
who suffer from illness or disability.

These discoveries are not without risk, however, because once we gain the key
to the system, just as we will be able to correct errors in the code that cause
disease or alterations, we will also be able to alter the properties and potential
performance of the human species, or to “select risks”. If there were to be free
access to the genetic information of each individual, we could find ourselves
faced with companies that use the data to select their employees. Or indeed,
there might be parents who are tempted by the idea of correcting the genome
of their children in order to prevent illnesses or improve their capacities. The
problem of the control of genetic data is already with us. An example of this is
the case of the companies that seek to patent certain genetic materials
extracted from a person’s body or the manipulation of this genetic material.

For all of these reasons, genetics must be a “therapy” that is accessible to

everyone, and must not become a privilege open only to certain social groups.
If genetic manipulation were to become widespread, it might accentuate social
rejection and discrimination against people, who, because they did not use
these procedures, suffered from some kind of “anomaly”. For example,
imagine for a moment an incredible development in technical aids and
rehabilitation technologies that could dramatically increase our eyesight. This
would be equivalent to creating a new form of disability in those who had not
decided to undergo such therapy. They would have inferior sight and would be
considered “less able”.

All of these scenarios, and many more that may arise, could incite great
injustice and discrimination.

It seems only a question of good sense for humankind to recognise that we all
have different abilities and to protect this diversity, and fight against the
already only too obvious tendency to overvalue “capability”.

5.5. Bio-ethics as a protection against dehumanisation

Bio-ethics—ethics applied to medical and biological advances — will play an

essential role in our changing world in which medical advances, especially in
the field of genetics, are gathering momentum.

The issue is that, in the not too distant future, genetics will allow us to repair,
or help repair, disabilities, diseases and defects as well as reduce suffering.
However, who will decide which disabilities, illness or defect needs repairing?
Who will decide what suffering is? Who will decide what the correct method of
repair will be? How will all this affect our social structures?

A sector of people with disability believe that their human rights are being
seriously infringed by advances in biomedicine, and by the potential new forms

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of discrimination that may be wielded in the name of scientific and
technological progress. The way Genetics is used will determine whether these
advances will serve not solely to treat illness and disability, but also to
discriminate against all forms of life considered “not normal”. Therefore, it is
important for limits to be placed that will guarantee that when biomedical
developments are applied, the rights and dignity of all human beings are
upheld. Instruments like the Council of Europe’s Convention on Human Rights
and the Biomedicine Council of Europe will have a major role to play.

Today it is often standard practice to terminate a pregnancy voluntarily if

prenatal examinations and genetic testing detect characteristics considered
“abnormal”, and therefore undesirable. This may be justifiably considered to be
a new form of eugenics and a clear attack against human diversity.

People with disability are often used as an example to justify the need to
advance in the field of Genetics in order to eradicate their particular problems.
For many, this simply reflects a discriminating medical attitude preventing
people with disability from leading normal lives as active, productive and equal
members of society. Can we afford to tolerate such a degree of
dehumanisation that reduces the uniqueness and value of a human being to
his or her genetic characteristics? Do human diversity, social relationships and
mutual respect mean nothing to us?

Bioethics must safeguard against Genetics and research focusing merely on

eradicating disability, to orient them towards improving our information about
disability, improving treatment of potentially disabling conditions and providing
better support for people with disabilities. Bioethics must prevent future
advances from becoming weapons for “genetic cleansing”, perhaps in the name
of profitability and “social efficiency”, which would mean that far less funding
would be channelled toward satisfying the needs of this collective.

5.6. Desirable objectives

If medical advances are to truly enhance the quality of life of people with
disability and promote social inclusion, a series of objectives will have to be
met. Many of these are transversal to all areas that seek to improve conditions
for people with disability:

Avoid disabling environments.

The inability to interact with one’s environment is much more disabling than a
disability in and of itself. The quality of life of people with disability is measured
not only in economic terms and medical prognoses, but also in terms of social
attitudes.

Prevent disability.

Some strategies must be broad sweeping to limit or eradicate wars, famine

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and malnutrition. Others must be specifically tailored to prevent and combat
diseases, guarantee road safety and safety at home and at work or de-activate
the millions of anti-personal mines that continue to wreak suffering and death
in many areas of the world. Our inability to prevent adverse events is, together
with accidents and infections, one of the greatest causes of disability.

Promote the participation of people with disability and their families in the
design, organisation and assessment of the rehabilitation services.

The rehabilitation itinerary should include such components as counselling and

training in self-sufficiency, the provision of special implements and apparatus,
specialised education and professional rehabilitation.

Improve services and medical care for people with disability.

According to recent reports from the World Health Organisation based on

surveys carried out in member states and in conjunction with the main
associations representing people with disability, the general state of medical
care available to people with disability leaves a lot to be desired. Of the 104
countries surveyed, 95% claim to provide medical care for people with
disability. However, 30% offer no form of rehabilitation, in 46 countries the
primary healthcare services fail to address the needs of people with disability,
and another 30% fail to provide specialised training for care providers who
work with people with disability. With the exception of the nursing staff,
specialists in all other areas (orthopaedic specialists, speech therapists,
psychologists or paediatricians) are seriously understaffed, and are almost
exclusively available only in urban areas. Thus, people with disability often
have to travel long distances to reach centres with adequate human and
material resources.

Intensify research into the prevention and rehabilitation of disability and

training for specialised human resources.

Government collaboration must be articulated on all levels in order to support

scientific and technological research aimed at the prevention and treatment of
disabilities, the improvement of rehabilitation processes and the social
integration of people with disability.

Scientific research is crucial to uncover new resources for the prevention,

detection, diagnosis and rehabilitation of many different kinds of disability.
However, in many countries most rehabilitation technology is imported, and
this increases the cost of services and makes it more difficult for people with
disability to access them. Thus, it is essential for every country to train and
support its own researchers in the field of rehabilitation and in clinical and
technological areas, and sustain research oriented towards the prevention and
the rehabilitation of disabilities.

When assigning research funds, priority must be given to projects in the field

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of disability. Advances in medical research have meant that we are now able to
glimpse solutions to many problems that were once considered to be
irreversible. Now, our knowledge in the fields of Cellular and Molecular Biology,
the Human Genome, Genetic Therapy and Biotechnology must be put at the
service of people with disability.

The rehabilitation of disability often requires the use of prostheses, technical

aids, implants, hearing and visual aids, etc. Research that improves the
technology of these devices while reducing their costs must be pushed forward.

Also foremost on the list of measures to meet these objectives is the training
of medical and paramedical personnel in the area of rehabilitation services.

Co-ordinate medical rehabilitation with social, educational, work and sports

services

The integration of people with disability can be forwarded through specific

cooperation agreements between medical rehabilitation and educational, labour
and sports services. All working-age people receiving medical rehabilitation
should also be given assessment and vocational advice and training to prepare
for a job. This can be facilitated through links between healthcare services and
programmes in the areas of education and employment.

Raise public awareness with information and orientation about disability and
rehabilitation.

It is crucial to disseminate information and orientation about disability and

rehabilitation to the general public to encourage people to participate in
activities relating to the prevention of disability and holistic rehabilitation. To
this end, the following activities should be promoted:

1The use of the Internet by people with disability and their families and the
public at large to disseminate information about situations and
conditions that can lead to disability, their prevention and treatment and
existing services, specialised staff, centres for the sale and hiring of
devices and apparatus for rehabilitation, etc.

2The creation of special centres for people with disability to provide

information and orientation directed to them, their families and the
public at large about disability.

3The Administration of regular tests free of charge for the detection and
rehabilitation of disabilities that can serve as vehicles to raise public
awareness. These should include paediatric check-ups for children with
disabilities, the detection of motor, auditory and visual disabilities,
sports injuries that can lead to disability, etc.

Of further interest would be a health education programme that involves the

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public at large in activities oriented towards the primary prevention of
conditions that generate disability.

6. PEOPLE WITH DISABILITY ALSO HAVE THE RIGHT TO ENJOY

LEISURE AND CULTURAL ACTIVITIES

6.1. A society for all citizens

Leisure and culture, like employment, education, health and housing, are
fundamental rights, inherent to all human beings. And just like the latter, they
should be protected by the criteria of justice and equality for all. A person’s
circumstances and her characteristics like race, religion or the presence of
some kind of disability should in no way affect her enjoyment of these rights.
However, in a world that is ever more global and competitive, where economic
success is our most cherished value, and where both things and people are
measured by their usefulness and productivity, it is increasingly difficult to
achieve what Reinhard Mohn calls “The society of citizens”. That is, a society
that is both supportive and protective, and that offers all its citizens the same
opportunities for participation. History has shown time and time again that
none of a country’s economic efforts or achievements can last unless they are
balanced with the stability of its social structures.

“Everybody has the right to take part freely in the cultural life of a community and to enjoy
the arts and participate in scientific progress and the resulting benefits.”

Universal Declaration of Human Rights, adopted and proclaimed by General Assembly

resolution 217 A (III) of 10 December 1948. Art. 27.1

6.2. Leisure and culture as determining factors of quality of life

Not only do all citizens have the fundamental and inherent right to take part in
leisure activities and cultural life, these activities are important in determining
quality of life, a concept measured by the degree of satisfaction of human
needs, both material and immaterial. And for this reason these are matters of
social justice and human rights. Quality of life not only means living
comfortably; it is only possible in a society whose goals aspire to human
development and the fulfilment of its people and communities.

Leisure and culture are social phenomena that, for the individual citizen,
translate into the benefits of personal enrichment and psychological balance,
and thus enhance a society’s quality of life. They are also crucial on the social
plane because participation in cultural, recreational and leisure activities is
essential to the socialisation process. Leisure and cultural activities strengthen
social cohesion and promote a sense of community. Because they broadly
expand our options to occupy our ever-increasing leisure time, the culture and
entertainment industries play a major role in our lives today. They are an
economic force that generates myriad jobs and activities. But that is not all;

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they play a key role in facilitating access to our cultural heritage.

With its rigid timetables, traffic and traffic jams, innumerable obligations and
duties to be fulfilled, day to day life often proves stressful...Leisure activities
help us achieve a sense of satisfaction which is a clear manifestation of quality
of life. Quality of life is fed by such important things as self-esteem, and the
way we feel about ourselves, in turn, conditions what we do. When we are not
socially integrated in all walks of life, we tend to undervalue our own self-
worth, and take fewer social, academic and professional risks and avoid facing
relationships with others.

The time we spend away from our daily obligations improves the quality of our
lives, basically because we use our personal independence and freedom of
choice, to decide what we want to do, whom we want to do it with and when
we want to do it. All of these parameters are often outside our control in other
aspects of life. Activities such as visiting a museum, participating in a sports
event or going to a play contribute to our sense of well-being. They reinforce
our positive attitudes and relationships with others, because creativity and
artistic expressions all form part of the experience. By satisfying different
aspects of our human, personal, emotional and social potential, these activities
help the individual feel fulfilled. These non-material aspects are essential to the
quality of our lives.

What is more, access to recreational and cultural activities is a natural route to

social integration. For people with disability, participation in these activities
sometimes requires an additional personal effort to overcome the obstacles
created by the disability. However, and more importantly, facilitating the
participation of people with disability by making all spaces accessible really is
the task of all of society. Regulations and ethical standards need to be adopted
to eliminate physical obstacles like architectural barriers, and problems in town
planning, transport and communications. Fortunately, more and more
countries are protecting the rights of people with disability through legislation
that addresses these issues. However, we are still a long way from
guaranteeing complete autonomy and integration.

Under the heading of leisure and cultural activities, we see how once again
accessibility to all environments and design for all are the prerequisites if all
citizens are to be able to fully exercise their rights. If the special needs of
people with disability are taken into account while new goods and services are
being developed, products that everyone can use will be designed and
produced. As a rule of thumb, when designing any space, it should be made to
accommodate a wheelchair to cover the needs of any eventual user.

Since a major obstacle for people with disability when it comes to exercising
their right to leisure and cultural activities is the difficulty of gaining physical
access to places, facilities and equipment, accessibility should be considered
not only a right, but a prerequisite for inclusion. In our society only people who
can move about freely and access all places, facilities and services are

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genuinely integrated into social, economic, commercial, cultural and political
life.

Reality is very far from the ideal of full participation. Let us look at a few
examples:

Tourism

Travelling is an enormously enriching experience. When we travel we meet

other people in the context of different cultures and languages, and experience
the pleasure of using different modes of transport, seeing new cities,
experiencing nature, going on excursions, site seeing, etc.

People with disability have great difficulty participating in these activities

because of the physical obstacles that limit or impede their mobility. Transport
facilities, hotels, cultural buildings, etc. are seldom designed with people with
disability in mind.

Games and sports

Sport is usually associated with the body and physical health, but it is much
more than that. It is a determining element in quality of life and social well-
being. The importance of sports is measured not on the basis of the number of
times one wins but on the enrichment to the person who takes part.

We have known for a long time that physical and spiritual health are intimately
linked, since as the saying goes, “Mens sana in corpore sano”. People take up a
sport not just to improve their physical condition, but because it contributes to
their personal and emotional balance as well. The person who practices a
sport enjoys many benefits:

1When sports activities are practised from childhood they promote many
positive forms of conduct such as respect for ones adversaries,
solidarity, collaboration with others, learning how to lose and how to
win, etc. These aspects are later applied in other day-to-day situations
off the playing field.

2Sport is an important leveller of social imbalances and contributes to the

development of equality among citizens.

3Team sports promote solidarity and are an important stimulus to human

relationships and social integration. Many of the activities inherent to
team sports reinforce inter-personal ties: wearing the same colours and
performing similar actions, spending hours training and sharing dressing
room banter, sharing aspirations and a commitment to the objectives of
the team, working together towards a common goal, etc.

Sport is an area where urgent action is needed to remove barriers to

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participation: most sports facilities are inaccessible; few material resources are
devoted to promoting sports among people with disability (often there are no
special protection devices or orientation for people with special needs); there
are very few professionals qualified to train and supervise people with
disability, etc.

Just as it would be impossible to build a sports facility without first drawing the
plans, it should be inconceivable to do so without taking into account the
eventual use of the installations. A typical breakdown would reserve facilities
for school children for part of the day and space for the elderly or people with
disability at other times. An example of the positive impact these measures
can have on the quality of life of the entire population is the use made of the
sports facilities and equipment built for the Olympic and Para-Olympic Games
in Barcelona, in 1992. The needs of the whole population were incorporated
into the plans and in the finished sports installations. Today, the public at large
enjoys all these facilities. All the efforts to adapt the sports installations in
Barcelona were continued in Atlanta and Sydney for the 1996 and 2000
Olympics.

Since the public at large is unfamiliar with these issues, it is urgent to make
society aware of these problems and understand what needs to be done for
people with disability to effectively take part in recreational activities. As this is
an issue that affects society as a whole, the mass media can have a huge
impact on raising public awareness. The support of the television networks
would be particularly useful because of the numbers of people they can reach if
they broadcast sporting events for people with disability. When society
becomes aware of what the problems are, we will be closer to reaching the
goal of organising sporting activities where everyone, people with disability and
the able-bodied alike, can all take part together in normal everyday activities,
rather than in sporadic events. It is equally important to pass legislation to
facilitate the integration of people with disability into standard sports activities.

Restaurants, cinemas, theatres and cultural activities.

These spaces are also often plagued by accessibility problems that impede or
limit the participation of people with disability because their needs are poorly
understood.

Here, once again, measures must be adopted to permit people with disability
to exercise their right to participate in these leisure and cultural activities.
Physical remedies such as ramps, lifts, special toilet and parking facilities,
wider doors, especially reserved areas, non-sliding surfaces, telephones at the
right height for people in wheel chairs, etc. are all needed. There are lots of
ways to make spaces accessible: signs can be adapted by using tactile
surfaces, sound devices, clear maps, relief and Braille options all at the right
height. For plays or movies, subtitles would help the hearing impaired follow
the plot, while a soundtrack with a description of the action would fill in the
gaps for the blind.

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Information and Communication Technology

New technologies need to be made accessible, and this is all the more true of
technologies that help people with disability participate in cultural and leisure
activities that would otherwise be closed to them. New technologies can also
be instrumental in ensuring the safety of people with disability.

To prevent what we have termed “technological disability”, full access to new

information technologies is fundamental. This is not just a question of making
sure that people with disability have access to the information available on the
Internet, but also to mobile telephones, video games and consoles. The aim is
to integrate accessibility into all of the products available on the general
market, instead of generating an exclusive market just for people with
disability.

The Internet is an important tool to help promote access to culture and

integration through participation. Accessible technology will allow everybody to
consult the vast amounts of information circulating on the web with the added
benefit that when people and communities inter-relate on the web, it is
impossible to identify their abilities or disabilities. The Internet eliminates the
effects of distance and encourages communication, making it the ideal means
to reduce isolation and loneliness through the immediacy of e-mails and chat
rooms. The Internet is the vehicle par excellence to disseminate information
and culture. Access to the web makes it is now easier for people with disability
and their families to keep abreast of medical and technological advances that
can have a positive impact on their health and quality of life; and today,
patients and doctors can use network technologies to communicate directly.
Internet brings current affairs, magazines, newspapers and reports directly to
us, and facilitates distance learning, takes us to virtual congresses, and so on.

Provide more information

All information published about cultural and recreational activities should

include exact up-to-date details about accessibility, so that people with
disability can make an informed choice about the most adequate
accommodation or transport. This information must be readily available and,
as far as possible, presented in different formats, (documents written in a
larger font, cassettes, brochures written in simple terms....) and the content
must be the same for all users.

On the other side of the coin, it is also important for society to be better
informed about disability. The still prevalent negative attitudes about disability
that are basically imputable to ignorance need to be supplanted by positive
ones that reflect reality better. The message to stress is that not only can they
consume and enjoy cultural and recreational activities, people with disability
can themselves also generate cultural products. The focus should be shifted
away from the disability, because with today’s new technical and technological

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solutions, disability should never be an obstacle to participation.

A system for the assessment of accessibility

All of the sectors of the economy that cater to the leisure industry, such as
hotels, transport networks, travel agencies, theatres and cinemas, museums
and other cultural institutions, exhibition halls and conference halls should be
required to provide information about the accessibility of their facilities. This
information will permit people with disability interested in visiting them to
evaluate whether they are adapted to their needs.

These assessments of accessibility should be carried out by qualified,

independent experts to guarantee the objectivity of the evaluation.

Society can no longer turn its back on the myriad obstacles that people with
disability must overcome to gain access to cultural and leisure centres. The
first, and perhaps most difficult, step in bringing down these barriers is to
make these problems known beyond the circles of those immediately affected,
and bring them to the attention of the general public.

The leisure sector now constitutes an economic force that is a good barometer
of a society’s development. The culture industry have become a strong
productive sector that sets the bar for our quality of life, providing citizens with
access to knowledge, innumerable cultural manifestations and all manner of
entertainment. Leisure societies, the bi-products of consumer societies, now
constitute a vital platform where the new knowledge- and learning-based
societies are being configured. After all, these new social manifestations have
sprung from the widespread consumption of cultural products through
communications channels that reach well beyond the walls of our classical halls
of knowledge.

Thus leisure, a vehicle for creativity and innovation, is becoming a decisive

factor for inclusion. Its various manifestations are a strong stimulus of our
collective imagination, fed by the contributions of everyone who has access to
the spaces where cultural and recreational activities take place. By aspiring to
a society whose leisure activities are inclusive, we are defining new ways of
integrating all citizens into collective life, and opening spaces where everyone
can make their contributions to human creativity.

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7. THE LIFE OF THE CITIZEN AND ACTIVE PARTICIPATION IN
POLITICAL DEVELOPMENT

A form of political innovation, creation and experimentation must be kept up regardless of the
political parties and their programmes. Nobody can deny that the day-to-day life of people
has changed since the seventies and my own life is proof of this change. A change which is
due, not to the political parties, but to a great number of other movements. These social
movements have changed our mentality and attitudes as well as the mentality and attitudes
of those people who are not related to the movements themselves. This is extremely positive
and important. I insist, these changes are not due to outdated, traditional political
organisations.

Michel Foucault

We are fully aware that the title of this section reflects none other than wishful
thinking. It, further, suggests a principle that is always dangerous to evoke
when undertaking solvent and rigorous intellectual analysis and social thought.
To speak of “the life of the citizen and active participation in political
development” in a study on disability and its future in the world induces the
error of supposing that people with disability throughout the world (which is
not confined, as much as some people would like to believe, to the western
nations and those that imitate their life style and social organisation) enjoy full
citizenship and participate actively, when they wish to do so, in political
development. The sad fact, borne out by numerous studies and statistics, is
that, as a collective, and throughout the world, people with disability are not in
a position to participate in the social spheres that surrounds them. They are
virtually barred from access to even their most immediate milieus, not to
speak of the widening circles of the municipal, regional, national and
continental stages, because of the acute disadvantages with which they start.
This fact must be faced four square if we wish to produce anything substantial
in the field of disability and political participation. It is this fact that underpins
the following reflection; it underpins it, yes, but it does not condition or limit it.
Taking full measure of reality, weighing it and perceiving it in its genuine
dimensions, however hard this may prove, and in the case of people with
disability it is certainly arduous, is still the best way of bringing about change.
It is the best way to anchor a process that will begin to turn the tables in an
environment marked by dependency and where people with disability are
acutely aware of their existential and vital limitations. However, this situation
is no longer tolerable in our societies. The only way we can overturn negative
realities and replace them with something more positive and appropriate for
our times is if we have exact and as reliable as possible knowledge of what we
wish to change. Otherwise, our acts can only be based on arbitrariness, good
will and good intentions, in other words, all of those stones that pave the road
to hell.

7.1. The life of the citizen

Whenever we approach the issue of disability we find a certain duality at its

core. This duality may well be artificial, since it is impossible to take a cross-

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section of a person, but the image will serve our purpose: The disabled person
is, first and foremost, a person, a human being; a person who circumstantially,
has a disability. In some, or indeed in many cases, society perceives the
disability as a category, constituting the primary and central essence of the
person. That this occurs, and it does far more often than it should, tells us that
something is failing in our social system: Against all logic, this single facet, the
feature that characterises this person’s disability is mistaken for the whole. It
is as though the smaller concentric circle, circumscribed within the larger one
somehow gobbled the larger circle up. This is monstrous, senseless logic, yes,
but a social reality that is human, all too human.

A report that focuses on disability is not the place to dissertate on the role of
the citizen at large in political and social life. We shall leave that task to the
sociologists and political analysts, who claim in resounding terms that it is the
citizens and the organizations representing them that weave the fabric of social
and political life. Suffice it to say that in the citizen participation model – where
the protagonist is the nameless, “average” citizen –the sea of people with
disability, along with all other social groups that are unique or singled-out,
would simply flow into the vast ocean of society, becoming diluted with the
rest of the citizenry. The resulting political mass would not be considered the
sum or product of many subgroups, but as a whole, acquiring its own nature,
identity and profile.

Having established this scene, as we endeavour to fulfil the mandate of our

report and examine disability today and possible scenarios for tomorrow, it is
now necessary for us to take a step backwards and examine the political
process at an earlier stage. For our current purposes, let us say that citizen
participation in general in social and political life is our journey’s final
destination. However, we must detain ourselves at an earlier stop and look
closer at the way people with disability, as such, participate in the political
process. People with disability enter this process with acute singularities, and
this shapes the very way that they participate, giving rise to a particular
“brand” of participation that is recognisable in social and political spheres. It
goes without saying that the singular experience of people with disability in the
political process is never exclusive of other forms of participation, which may
and indeed do take place simultaneously. But it is nonetheless true that on
many occasions the entry of people with disability into the process is unique,
as it is based on the fact of their disability, and for this very reason this
political involvement is of a very deep nature.

Graphically expressed, the disabled person must first ascend the rungs of the ladder to the
plateau of full citizenship, and from there begin the climb to full participation and acceptance
of social and political responsibility.

Luis Cayo Pérez Bueno, Technical Director of the Spanish Committee of Representatives for
the Disabled Persons (CERMI), España

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7.2. The Disability Movement and associations representing people
with disability

The Disability Movement itself often provides the forum where the person with
disability encounters grassroots activism for the first time. Comprised by all
manner of associations created to help the person with disability improve her
quality of life by pooling resources, the Disability Movement represents a
community of interests, and in the most broad sense, provides the primordial
formula for forming groups where people draw together after each individual
has experienced a similar process of consciousness raising:

a)Self-recognition: The person with disability becomes aware of the

personal circumstances that make her different from others and
distinct from the community’s paradigm of “normal”. The person
understands that she occupies a unique position within the social
structure;

b)The second stage is recognising oneself in others. In other words,

becoming aware that the perception and subsequent interiorisation of
the circumstances that make her different are not isolated, affecting
her alone. She becomes aware that other members of the community
she lives in experience similar situations.

c)The previous stage is usually accompanied by a clear awareness that

this situation, this circumstance that is so personal, yet also shared
with others, places the person with disability on many occasions at an
absolute disadvantage and is a determining factor which condemns
her to exclusion, or at least places her at risk of exclusion. Put in
economic terms alone, a disabled person's consumption of goods and
services is greatly inferior to that of a “normal” person. Generally
speaking, the person with disability contributes and receives less than
any other individual within his or her community;

d)The position of disadvantage, extreme disadvantage, that the disabled

person faces, compounded by the treatment received from society,
leads inevitably to the realisation that the disabled person is not only
the one who is most interested in climbing out of this position of
disadvantage, (this would seem obvious) but that she is also the only
member of society who feels this position of disadvantage with
enough intensity and urgency to make it essential to find a solution to
the problem. It is people with disability themselves who must become
the agents of the personal and social process of normalisation. They
must accept to take control of their own destinies, once they have
understood that whatever solutions there may be will never arise
gratuitously, but will be forged as a response to their disabilities and
through their organised actions;

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 e)The next step is the discovery of what we have called a community of
interests. Once the person with disability has recognised her personal
situation and recognised that it, or similar situations are shared by
others, the circumstance of being disabled leads to the discovery of
shared interests (that will be explored in another section). These
shared interests then become the nexus of a union with other people
and provide the occasion to pool resources and take concerted action
to achieve common goals;

f)To all of these elements we must add another of an eminently subjective

character: the will of the individual. The will to form part of a group
which offers a social organisation that becomes the vehicle through
which to act with others who are in a similar situation to alter the
negative aspect or, at least, those perceived as negative that limit or
impede the full development of the possibilities of the disabled
person.

All of these elements, combined in different quantities and doses, come

together to form the nucleus of an association or support group organised by
and for people with disability. Each group is but a small particle, yet when they
join forces, they forge a genuine Movement of people with disability, under the
banner of the circumstance of a disability believed to be sufficiently relevant
because of its effects on the social opportunities of each individual to constitute
the base of an authentic social movement.

It goes without saying that adopting, from among many others, the option of
articulating a group around the circumstance of disability in no way excludes
other options for political action. The innumerable formulae for political
activism open to people with disability, just as to any other citizen, include
such legitimate organisations as political parties, trade unions, volunteer and
non-profit organisations, NGOs etc. While we are fully aware of the importance
of these options, we believe their in-depth analysis is not germane to this
study, whose objective is to explore the way people with disability organise
political and social action through mechanisms that are genuinely built
exclusively for, and run by themselves to improve the conditions of their lives.

7.3. The ways groups are articulated

After explaining what propels people with disability to seek out others and form
associations, let us turn our attention to the ways in which these groups are
articulated. An observation of the Disability Movement reveals that groups tend
to organise around the following criteria:

- the type of disability, or similarities in the original impairment, whether

physical, mental, sensorial or of any other type; people with disability tend to
form associations with others who have the same kind of disability, on the
understanding that people who share a common social position and who suffer
from similar problems with a common cause are best placed to propose and

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search for common solutions;

- location; on other occasions the criterion for association is extrinsic to the

person with disability himself and the nexus for association is the person's
geographical location. In these cases, people with disability join organisations
in their neighbourhoods, cities, regions or provinces, with the conviction that
they share similar problems and that solutions will be articulated through the
Authorities with competences in their political jurisdictions;

- another very common criterion is the objective or the end that is sought by
the association; in these instances, objectives like integration into the labour
market, the acquisition of technical aids and personal assistance services, the
promotion of education, the extension of culture, etc. become the factors that
draw people with disability to specific groups;

- a further criterion for association is the social function of the members of the
group; for example, university students with disabilities at a given institute of
higher education may form an association because they have common needs
as students and shared demands which are best attended to as a group;

- other criteria for forming a group may be ideological principles or creeds;

people with disability who share a set of political ideas or religious beliefs may
organise groups. There are, hence, many organisations of people with
disability in many different countries which are of a political or confessional
nature;

- another factor that may bring people with disability together is a shared
interest in a leisure activity, such as a sport;

- in other cases it is the relationship with the disabled person that forms the
criterion for the association; the parents and relatives of minors with disability
or of people with certain types of disabilities who lack the faculties to represent
themselves may form groups to further the interests of their family members.

These are some of the criteria and factors that lead people with disability and
their families to form groups and associations. This list is by no means
exhaustive, and the factors will rarely be present in a pure and exclusive state.
On many occasions all of these elements coincide and become blurred,
explaining the complexity of the associations of people with disability.
Representing as it does so many different interests, the Disability Movement is
far from monolithic; rather, it is a phenomenon that responds to diverse
purposes, interests and situations, some of which may even be contradictory.

7.4. Political action in the Disability Movement

To understand how the Disability Movement came into being, we need to look
further than the mere sum of all the different associations for people with

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disability at any given time and in any given geographical unit1. Before these
organisations can meld into a real Movement of people with disability, two
factors must coincide: There must a certain unity of action with the aim of
achieving specific objectives to satisfy, at least to some extent, the needs and
demands of the disabled population; and these organisations must truly
represent the disabled population as a whole.

Before examining the type of unity and the actions required for the Movement
to work effectively on behalf of an infinite number of subjects and agents,
grouped in myriad associations, let us examine for a moment another issue of
paramount importance: the question of representation. The Disability
Movement is not the congregation of each and every disabled person living in a
specific area, for example, a State. It is, rather, a representative segment of
the whole which, in turn, is a minority within the larger population, who act,
through the power vested in them, on behalf of the persons they represent to
forward the interests of the group. When anyone acts on behalf of another, a
series of requirements must be fulfilled in order for this representation to be
valid, and to produce positive effects in pro of the persons represented. In this
light, if the Disability Movement is constituted by the actions of an organised
minority of a far larger group of people, the first condition required is for it to
be truly and legitimately representative.

This means that it should have the greatest possible support, not only in terms
of numbers, but also in terms of the strength of its bonds with the segment of
the population it represents. If the Movement's activities are to go beyond
mere rhetoric devoid of content and of real effects, they must be backed by a
well-articulated network at the grassroots level. The active participation of
people with disability in creating and acting through the social organisations
established to this end, and the sheer multiplicity of the groups acting on many
different but complementary fronts, provide the pillars that sustain a solid,
representative movement. However, the evidence shows that these two
circumstances, active grassroots participations on many complementary fronts,
are often not the case. In most countries, the Disability Movement is still
fragile, precarious and unstable; the participation of people with disability
themselves is minimal, the number of organisations limited, and there is
indeed little awareness of the need of creating representative associations. The
reasons for this situation (which we cannot look at here) are many and varied,
but they are closely linked to the lower level of social and cultural development
of people with disability in many countries throughout the world in comparison
to the average citizen in the non-disabled population. This is one of the most
serious deficiencies of the Disability Movement. We must deploy all the tools
at our disposal on all fronts to redress this situation, and the first task is to
stimulate awareness to change the culture of the disabled population itself.

However, the question of representation does not stop here. It engenders

procedural requirements that are of the utmost importance: the legitimacy of

1 For the purposes of this analysis we will generally use the Nation State as our reference, because it is the
geo/political unit most widely used today.

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the representatives who become the spokespeople of the movement that gives
ab initio validity to their actions on behalf of the people they represent. The
representatives of disabled people must be legitimate on two fronts. First, they
must truly represent their constituents in the classical terms of democracy: the
grassroots movement must be able to choose them from among diverse
proposals and candidates, after examining opinions and offers, through direct
election. Once elected, these representatives acquire a commitment to act in
accordance with the promises tendered, under the understanding that their
powers of representation can be revoked in the event that these are not
upheld, or in the event of unjustified actions that are different from those
proposed. The other aspect of legitimacy is not exclusive to the representatives
of people with disability, although it especially concerns them: the
representatives of the Movement should for the most part be people with
disability, just as the Movement itself should be made up of people with
disability. The process whereby people with disability themselves take control
of their social and personal destinies should dispel antiquated notions that,
often with all the best altruistic intentions possible, cast people with disability
as inferior, weaker or limited beings compared to the rest of the population.
Under this antiquated model, others decided things in their name that affected
vital aspects that only the person with disability could legitimately decide for
himself. Of course this second aspect of legitimacy does not imply that people
with disability can be represented solely and exclusively by others with
disability, disregarding the intervention and collaboration of non-disabled
people. What it does mean is that we must re-focus the debate to re-establish
the principle of the right of people with disability to develop and fulfil their own
personalities, whatever their circumstances. In other words, we must reclaim
for people with disability one of the universal human rights.

7.5. The content of representative political action

The political agenda of the Disability Movement is not something that is set in
concrete, nor is it a mechanism centred only on itself. Rather, just as is true of
any representative organisation, its justification resides in the results it can
achieve to benefit the people it represents and on whose behalf it acts. The
principle objectives of the associations in the Movement are to improve the
living standards of people with disability, encourage the recognition and
protection of their rights, promote equal opportunities, prevent all forms of
discrimination and further integration into mainstream society, and these are
the aims they are striving to achieve.

All the political actions undertaken by the Movement on behalf of the people it
represents are aimed at achieving the goals and aspirations expressed by
people with disability. These actions are dictated by the following formal and
material aspects:

A) Formal aspects

− The organised Disability Movement should endeavour to become the

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 universally accepted reference for the defense of people with
disability; it should constitute the platform that represents them at
the national level in each of our countries. It should also provide the
structure to coordinate the sector internationally, representing its
interests, needs and demands and gaining results on the worldwide
level.

− Its role as the platform that unifies all efforts must be effective. The
Movement must, therefore, be recognised and perceived as the
"spokesperson" of people with disability by all Public Authorities, the
different social agents, the general public, people with disability
themselves and Civil Society as a whole.

− As a result of the foregoing, the articulated Disability Movement

should be recognised as the valid interlocutor between the collective it
represents and the Public Authorities with political decision-making
power over the questions that concern people with disability.

− All of the Disability Movement's political activities are directed towards

improving living conditions for people with disability in a spirit of co-
responsibility. Specifically the work of the Movement is organised as
follows:

- Making proposals; the Disability Movement should make

articulate proposals before the Authorities and social agents
(including proposals that affect legislation) regarding the actions
to be taken to satisfy the basic needs and concerns of people
with disability. Society at large must be duly informed of these
proposals. The Movement must not only put forward solutions,
but must demand a rigorous diagnosis of the current situation,
while formulating measures and actions that people with
disability themselves perceive as the most suitable to achieve
the goals established;

- Lobbying; these activities must be in the main directed towards

the Public Authorities, although other groups with decision-
making capacity that affects people with disability must also be
lobbied, such trade unions, employers' organisations,
corporations and institutions, public opinion leaders, etc., making
known the proposals and opinions forwarded by the sector to
ensure support, or at least to diminish opposition to measures
formulated to defend and improve the lives of people with
disability;

- Negotiation; the platforms representing people with disability

must be able to negotiate with the Authorities and other entities
with decision-making power with regard to the proposals for
action that the Movement presents, or concerning any decision

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 that affects people with disability to defend the interests of the
sector at all times;

- Prior consultation and active participation; the Disability sector

must be consulted throughout the decision making process
concerning issues that affect people with disability either directly
or indirectly, and must participate actively at all times; this
function is part of a broader concept, that affects not only people
with disability, but extends to all social sectors and citizens to
create a “civil dialogue”, which, due to its importance, we shall
be looking at later;

- Defence and fight against discrimination; an organised Disability

Movement should act as the watchdog that makes sure that
legislation guaranteeing the rights and liberties of people with
disability is upheld; it must be ever vigilant against de facto or
even legal discrimination against people with disability. This fight
against discrimination will, when necessary, involve promoting
changes in our laws, and demanding legal protection in cases
where this is the last resort to restore a person's rights or
liberties, or overturn a situation of discrimination.

- Raising awareness in society; in a society galvanised by the

mass media, it is crucial to create a visible space from which the
mass media can report objectively, truthfully and respectfully on
the realities of people with disability. This function will help
strengthen the image of the disabled population, portraying it in
a more positive light, and convey a message to the general
public that will promote stronger ties between disability and
public opinion.

- Joint and complementary actions; the disabled sector is not, by

any means, the only segment of the population that is
underprivileged and excluded; rather, it has many points in
common with other social segments (women, immigrants, ethnic
minorities, homosexuals, etc.). It should, therefore, broaden the
scope of its actions to the social sector as a whole, deploying and
sharing strategies and lines of action that reach beyond the field
of disability to take advantage of economies of scale and benefit
all less favoured groups.

B) Material aspects

Apart from the formal aspects that shape the strategies the Disability
Movement should deploy to best represent its constituents, material aspects
should be simultaneously identified to define the content of the action to be
undertaken. These aspects are none other than the areas where the Movement
should focus its activities to combat the social exclusion of people with

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disability, and where it should concentrate its efforts to surmount the obstacles
that bar them from taking part in ordinary social activities.

An objective analysis of the social reality of people with disability in the

majority of countries throughout the world reveals that certain areas are
consistently sources of exclusion and impede the personal and social
development of society's disabled members. These are areas where people
with disability find fewer opportunities to exercise their rights and gain access
to goods and services within the community. They include:

− Employment; without employment and without adequate training for

employment, it is impossible for people with disability to join the
productive sector. While they remain outside productive circuits,
people with disability will never gain the degree of independence they
need to take charge of their own lives.

− Accessibility and barriers of all kinds; physical and mental barriers

limit the scope of action of people with disability, compounding the
initial, objective disadvantages that prevent them for participating
fully in social life.

− Education; this is a particularly important factor for the personal

development of people with disability. A person's education conditions
her access to recognised means of integration, such as employment.

− Health, prevention and rehabilitation; personal development and full

social participation are impossible as long as the basic healthcare
needs of people with disability go unaddressed.

− Social protection and social benefits; these measures should

complement the Disability Movement's own to promote the active
incorporation of people with disability into the labour market. It is,
furthermore, essential to provide protection for people who are unable
to access or maintain employment.

− Attention to people with more severe disabilities; these are precisely

society’s most vulnerable members, and their greater needs require
more attention, not only from the political powers and society, but
also and especially from the Disability Movement itself.

− The digital opportunity (new technologies and the new Information

and Knowledge Societies); these are the factors that will determine
the society of the future: under no circumstances must it exclude
people with disability.

− Women with disability; this segment is not only quite numerous within
the group of people with disabilities, it is also the sector which is
subject to the most severe forms of discrimination, as disabled

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 women are often the victims of discrimination on the grounds of
gender and disability.

− Access to culture and sports; these activities are a recognised and

proven way of achieving social integration and personal enrichment.

7.6. Parallel actions

Through the organisations they have created and that they run, people with
disability have given rise of an articulated Movement entrusted by its
constituents to promote, defend and encourage the development of their
interests. However, the Disability sector does not work in a vacuum, but rather
complements the activities of other organisations working on the same social
issues, but from a broader social base. Its natural collaborators are the
Government and Public Administrations, political parties, employers'
organisations, the mass media, non-profit organisations, the church, and so
on. By placing people with disability in prominent decision-making positions in
these more "generic" organisations, the Disability Movement can further its
aims; it can make sure that these groups are sensitive to the needs of the
disabled sector, and that they do not adopt measure that are damaging to its
interests.

Our analysis has omitted examining the political and social activities of people
with disability in areas where the fact of their disability has little or no bearing,
believing that this type of political participation is beyond the scope of this
Report. Instances of this form of political activism would not illustrate activities
in the field of Disability, but would simply be examples of how citizens take
part in the political process. The study of this phenomenon would fall to the
social analysts and while it would, of course, provide much information of
interest, it would be outside the thrust of a study of the Disability sector.

7.7. Financing representative political action

Most human activities cost money, and those undertaken in the political sphere
are no exception. The work of the Disability sector must, therefore, be
supported by adequate financial resources. While the work of volunteers who
contribute manpower, materials and ideas is invaluable, it is rarely sufficient to
cover all the Movement’s needs. Funds must also be found to coordinate all the
Movement’s interventions, and organise and maintain institutions worthy of the
name that play a vital role in pursuing its objectives. Were the contributions of
volunteers the only resources to be tapped, the stability and strength of the
Movement would be in jeopardy.

The Disability sector must, therefore, explore alternative sources of financing.

Current income comes from membership fees collected by the associations that
compose the Movement, and financial contributions from families or
individuals. However, in the light of the proverbial economic hardships that
people with disability often experience, these sources cannot in and of

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themselves finance all of the Movement’s activities. Public funds from local,
regional, national and supranational authorities are also often available, with
the drawback, nonetheless, that accepting financing from these entities can
compromise the Movement's independence and create relations that are less
than healthy. Public financing, furthermore, is seldom sufficient to cover the
Movement's needs. In some places, the Movement is self-financing by
providing competitive goods and services to the market. Groups offer
assessment services, compile reports, manage social service programmes on
behalf of public and private entities and provide specific services to people with
disability. This model has proven successful as it diversifies sources of
financing, and incorporates professional-level management skills. However,
when organisations become involved in market activities, they run the risk of
contaminating and diluting the essence of the Movement and may lose sight of
the primordial objective of representing people with disability. Furthermore, if
this model becomes wider spread, it introduces the danger of the Movement's
turning into yet another provider of products and services that will eventually
and inevitably apply only market criteria to its activities.

Another source of financing that has enjoyed a certain amount of success in

various parts of the world is obtaining resources via donations or aid from
corporations, foundations and non-governmental organisation (the latter
having made inroads in cooperation between rich and poor countries). Public
fund raising campaigns and other activities sponsored by specific associations
for people with disability have also generated income for the Movement.

As can be seen, the issue of how to finance the Disability Movement is one that
has yet to be resolved. As the different options all present advantages and
drawbacks, perhaps the best alternative is to conjugate them in an intelligent
way, depending on the circumstances of each case, adapting them to bring out
the best, and minimise the risks of every situation.

7.8. Social responsibility

Apart from the volunteer nature and the humanitarian and altruistic spirit that
generally imbue movements like the one in favour of people with disability,
there is an another essential ingredient that should inform the activities of any
social movement: social responsibility. Social responsibility must be the
backbone of all activities undertaken in the interests of an underprivileged
group, and most specifically it must be patent in the behaviour of any
movement’s leaders.

The leaders of the Disability Movement have a direct responsibility towards the
people with disability, the rank and file that they represent. These people
provide the very raison d'être of the Movement, and they must have
guarantees of democratic representation, electing their leaders through due
participation. Once elected, the Movement's leaders are accountable for their
actions, and must be open to critical analysis; they are responsible for
administering economic resources efficiently and efficaciously, and are

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answerable for the decisions that they take. They also have a responsibility
towards financial donors, both public and private, who should require
guarantees that the funds they provide are correctly applied to obtain the
stated aims of the organisations comprising the Movement.

While the activities of the Disability Movement are mainly confined to Civil
Society and the volunteer sector, it is far from exempt from the scrutiny of
mechanisms that monitor its activities, actions and stewardship of resources.
Transparency and accountability are much more than moral and legal
obligations. They are values that reside at the very heart of the Disability
Movement itself.

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 Chapter Four
QUALITY OF LIFE BASE ON SOLIDARITY

The mounting social inequalities, dissatisfaction and human unease

that signal our times contrast sharply with the economic growth and
technological development attained at the brink of the XXI century.
For too many people, the era of globalisation and of the New
Economy is lapsing into the era of poverty and social exclusion.

Ways must be found to foment values and alternative behaviour

patterns that foster human development and allow all human beings
in the four corners of the Earth, to step forward and claim their
rights, liberties, well-being and human dignity.

Mainstreaming disability can provide a new paradigm for the

acceptance of human differences. It can become a model of how to
use the human resources, knowledge, will, hopes and desires of
each and every member of society. This chapter explores the
contributions that people with disability can make to society as a
whole. It examines how their experiences can serve to help develop
values like solidarity, cooperation and equality that can inspire a
transforming humanism that nourishes the development of
Humankind. It outlines the contours of a new society where
economic competitiveness goes hand in hand with social cohesion.

1. THE NEED TO RECREATE VALUES IN A CIVILISATION AT A

CROSSROADS

While in recent years material wealth and technical progress have surpassed
all expectations in rich and developed countries, in developing countries the
number of people without homes, jobs, education, medicine or sufficient
incomes to be able to lead a dignified life has also reached unprecedented
levels. More people than ever live below the poverty threshold and the gap
between rich and poor countries gets wider with each passing year. The chasm
separating the North from the South is so deep today that it is difficult to
imagine it's ever being bridged.

In today’s world, not even the rich countries are able to guarantee a
satisfactory level of human development for all their inhabitants, and entire
sectors of society remain on the fringe of the illusion of prosperity. In the
United States, the world's economic leader, 16% of the population (one person
out of every six) are the victims of social exclusion. In the United Kingdom, a
quarter of all children live below the poverty line.

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This social breach is so profound that it has changed the concept of social
exclusion itself. The original term of social exclusion referred to those
segments of society which were displaced by the system and left at the mercy
of charity organisations. Nowadays, however, the concept of exclusion is much
broader; it no longer alludes merely to these minority segments, but also
refers to a true fracture that has rent the very heart of society, and has shaken
it to its core. It is a like a false note struck in the concert of human concord.

It does not seem to be by chance that the “digital breach”, another false note
in society, is being superimposed on the concept of social exclusion. According
to the UNESCO's World Report on Communication, "history shows that the
countries which do not take advantage of the new information, computer and
telecommunications technologies will inevitably be slowed down in their
development ".

The Internet was one of the great hopes for evening out the imbalances
between the rich and the poor in the world. However, various reports produced
by qualified bodies have confirmed that, far from laying bridges to include the
excluded, the advent of the Internet has accentuated the inequalities: The
richest 20% of the world’s population command 93% of Internet access,
whereas the poor scarcely muster 0.2% percent of the lines.

At the same time, the unrelenting competition businesses are facing today is,
to say the least, disconcerting. The idea that the new economy is a paradise of
highly qualified employment paying high salaries is far from the truth. Almost
40% of the employment that will be generated between now and the year
2006 will pay less than 10 dollars an hour and will require relatively low
educational qualifications. According to Robinson, all big waves of innovation
are immediately followed by the creation of new, competitive companies avid
to prosper in their wake. The result is a dynamic model but one that is
traumatising to human beings. Innovation under these conditions destabilises
the way things are done, and the participants in this new economy live under
chronic stress. The income derived from innovation scarcely stretches to
recover research costs before competitors drive prices down with alarming
speed. This cycle is even shorter in the Information Economy. Today, even the
most quality workers fear for their jobs, and margins are being threatened
from all sides. Companies have begun to opt for a temporary workforce that is
employed part time, and often resort to outsourcing to meet their human
resources needs. (In Silicon Valley 42% of all jobs are precarious).

The United Nations believes that excessive competitiveness, the fruit of

liberalisation and deregulation, is one of the causes of the poverty that plagues
so many societies today, because it often forces the poorest and weakest
companies to close their doors. The American sociologist James Petras has
denounced that during the Brazilian economic crisis, European and North
American multi-national companies snapped up indebted companies for next to
nothing, made many workers redundant and reduced the salaries of those who
remained. The extreme vulnerability of workers, Civil Society and small and

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medium-sized enterprises is such that a regulating mechanism must be put in
place to keep multi-national companies from perpetrating these actions.
Massive redundancies in order to put companies back on their feet, aggressive
competitiveness and the obsession with growth at all costs are perverse trends
that perpetuate the concentration of wealth and the globalisation of poverty. In
this type of environment, it is people with disability and other groups at risk of
social exclusion who are the first to suffer directly when their defences are
eroded, and unfortunately, this is only the preamble to other situations where
social discrimination becomes reality.

The rise in inequality, dissatisfaction and poverty are realities that are in vivid
contrast to the levels of economic growth and technological development
reached at the beginning of this 21st Century. The era of globalisation and the
new economy have also ushered in the era of social exclusion, with an increase
in poverty that has trapped many people without hope of escaping the cycle.
We live in a dual world where a group of privileged people enjoy previously
unheard of wealth and material wellbeing, side by side with an immense mass
of people who are poor, unemployed and the victims of discrimination.

We are not referring to old formulas related more or less openly with charity because we are
speaking about rights, no more and no less: the right to a dignified life, the right to equality
which will disprove the old and antiquated maxim of Jefferson: “all men are born equal, and
that’s the last time they are”. We are, rather, more in line with John Stuart Mill when he
states that “there is no better proof of the progress of a civilisation than that of the progress
of cooperation ". Unfortunately, this cooperation in the field of disabilities is far from being
one of the parameters of globalisation. In fact, it is far from being considered at all: it is
limited to very specific circumstances in limited geographical areas.

Globalisation, as we understand it (a single world, a single, free, egalitarian and supportive

population), does not and cannot consist of the pure and simple imposition of certain global
economic and social conditions, laid down by some unknown force, which we have to accept
passively. As we understand it, globalisation, if it is to be something worthy of esteem and a
factor for mobilisation and the positive adhesion of wills, means that everything must concern
and be a question for everyone, it must be something in which we all take part. In Europe, we
have tried – and I sincerely believe we are being successful – to ensure that disability, a
personal circumstance but with undeniable social effects, which affects 40 million Europeans,
stops being invisible and becomes patent, manifest, because if it is not so, we will continue to
be ignored as a group and as individuals, for diagnoses as well as for solutions.

José María Arroyo Zarzosa, Chairman of the Board of Directors of the Organización Nacional
de Ciegos de España (ONCE) at the time the Report was written, and currently Chairman of
the Once's Business Corporation.

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We cannot accept that there are no alternatives to this situation, that
inequality and injustice are simply inevitable. At this crossroads in the
history of humankind, we must look for different directions and
encourage behaviour patterns and values that enable us to create
alternatives that permit human development. We must ring in an era of
human rights, liberties, wellbeing and dignity for all people in all the
corners of the world. If we really aspire to reaching the plane of
satisfaction, security and real freedom for all the citizens of the world,
we must modify the logic of the three factors that govern the way we
work today, and indeed how we conduct all human activity: the logic of
production and the material use of resources, and strive to make them
reasonable and sustainable; the logic of macro-economic regulation, so
that resources can be shared equally; and the logic of the values and
beliefs that sustain our collective life, so that we can free ourselves of
the general sense of frustration that permeates our lives when material
gain is the only incentive for humankind. To sum up, we need to rethink
the model of development we are aiming for.

1.1. A solid social environment

While public and private prosperity are two of the drivers of social progress,
they do not automatically imply that a higher level of social satisfaction is
produced in times of economic growth. In fact, apparently quite the opposite
occurs. Putnam and Williamson have pointed out that in the United States,
favourable economic development is accompanied by a latent discontent in
public opinion. Surveys that gauge happiness show that figures today are
lower than those corresponding to one generation ago, when income per capita
was significantly lower, revealing that more people than ever are discontent
with the way we live. We seem to be more and more convinced that our moral
climate is crumbling, and the number of clinical depressions has multiplied. The
new economy has not been able to satisfy the hopes it raised but, on the
contrary, the population is under greater stress, since in order to earn more,
we have to work more and we have less time for family and social
relationships. All of these factors are crucial if we are to understand the reason
behind this discontent in a period of economic bonanza. Individual happiness
has more to do with the strength of our social ties than with any other factor,
including income. Prosperity and money alone do not guarantee the strength of
family relationships and friendships. They do not give us happiness.

From a collective point of view, these changes represent a decrease in what

has been called “social capital”. Social capital is made up of the networks
linking people within society and of the rules of reciprocity and trust that these
networks create. In other words, social capital refers to the level at which
people relate to each other. Social capital affects society in many ways, from
how political institutions are run, to the life expectancy of a country's
population. A decline in social capital spells a threat for democracy — and for

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the quality of life of the people — and it is as serious as a sharp reduction in
physical or financial capital.

We are finding out that macro-economic stability, growth in production and

commerce and technological development are not sufficient to reduce poverty
and inequality. A solid social environment is also required. We are learning that
better quality of life will not necessarily accompany a higher income, but that it
depends on increased civil liberties and political freedom, more security and
participation in public life, more education, food, and health, a better protected
environment and a State apparatus that really works. Human development
implies strengthening the capacities and liberties of all members of the
community, and before this can happen the social mechanisms that guarantee
that all citizens can exercise their rights and liberties must be put in place.

Another lesson we need to assimilate is that far from constituting brakes to

development, social equality and justice promote economic efficiency and the
expansion of trade and prosperity in the medium and long terms. So, if
inequalities are to be reduced, and all citizens given access to wealth, we must
implement fair redistribution measures with policies that stimulate the
participation of all in social and economic life. On an international level, a
stable environment is sine qua none before economies can flourish, and
stability can only be achieved if the right regulatory frameworks are in place to
limit speculation and control the financial volatility associated with
globalisation. If we really seek to globalise prosperity, industrialised nations
will have to liberalise trade, but they will also have to accompany these
measures with strong social and environmental clauses. Only in this way will
we manage to give globalisation a human face and make it compatible with a
higher conception of democracy and human dignity.

1.2. A transforming humanism that fosters the development of

Humankind

In counterbalance to individualism, competitiveness and the accumulation of

riches, we should strive to promote values such as solidarity, cooperation and
equality, as these make up a form of humanism that is capable of transforming
human development.

Solidarity is not simply a feeling of compassion or mercy when we contemplate

suffering that affects others near us or far away. It is a firm and constant
commitment to the common good, to the wellbeing of each and every one of
our fellow citizens. Solidarity is much more than a feeling: it is the intelligent
desire and capacity to work in an organised way in favour of the common
good; it is aimed at bringing about lasting social change that will provide the
solid rock on which to build a world where every person can take charge of his
own life within his community. Solidarity will help us build a world in which
everyone will be able to enjoy genuine quality of life based on human values
and support for each other.

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Today, thousands of people show their solidarity by sharing in common
projects where they work hand in hand with others, taking on their needs as
their own. These people understand that it is by joining forces that we can
achieve human development that is based on dignity and that never
compromises freedom. These are the values that will help us shape a better
society, from the private to the collective sphere. The private citizen who holds
these values and puts them into practice elicits reciprocal responses in her
environment which, in turn, generate positive attitudes and feelings, such as
greater self-respect and satisfaction. Likewise, the society or group that
professes and applies these values improves its cohesion and efficiency and is
able to improve the quality of life of each of its members.

The notion of solidarity brings with it the idea of closing ranks with others to
further a common cause. Solidarity requires empathy, the ability to put oneself
in the shoes of another, and from it stems the determination to work together
to nurture a social environment where mutual and collective development are
possible. But if our goal is to build an environment with real quality of life,
where we support one another, then solidarity must reach beyond those
closest to us and our peers. Authentic solidarity permits us to understand
people outside our immediate circle who share our concerns and problems, to
embrace all members of society. It is true that people with disability need to
share a common vision and we strive to help each other achieve our goals;
however, true solidarity makes us "reach out", beyond seeking satisfaction for
ourselves or our immediate group, to endeavour to multiply the possibilities in
life for all people, now and in the future, because the goal of true solidarity is
not to have, but to share.

Cooperation strengthens cohesion within society. A significant and current

example of international cooperation on a very relevant front is the fight the
non-governmental organisations are waging in Africa to compel the
international community, and particularly pharmaceutical laboratories, to
produce medicines to treat AIDS at a significantly lower cost, and eliminate all
the red tape and other obstacles to treatment. A Civil Society capable of
bringing its citizens together around the values it represents generates a
feeling of self-esteem from the mere fact of belonging to it.

1.3. The value of diversity

Solidarity is more than a safeguard of the dignity and rights of the individual; it
stems from the conviction that human diversity is one of society’s strengths.
In a society where solidarity reigns, providing a haven for diversity is not only
the imperative of justice and equality, it is understood as something that is
extraordinarily positive and productive.

Respect for diversity is a prerequisite to real equality, and social inequalities

recede as society accepts that all citizens have the right to be different and
begins to value diversity. A civilised society should feel uncomfortable with
social and economic inequalities, which originate not so much from differences

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between individuals, but from the way society is organised. Policies aimed at
reducing instances of inequality must be put into place to tear down the
barriers that prevent everybody from exercising their rights and actively taking
part.

Traditional economic and social processes have contributed to making diversity

socially invisible, and for a long time society has seen and understood little
about people with disability. Prejudices have occupied the place of knowledge,
and as a result, the problems facing people with disability have gone
unattended, with the belief that they belong to the individual realm and have
no place on the public stage. We now know that if these problems are to be
solved, they must be faced collectively. An example of this necessary process
of solidarity is the case of domestic violence. Domestic violence is no longer
considered something exclusive to the private sphere where it was hidden and
shielded from public scrutiny, to be accepted as a problem that affects us all,
and that must be dealt with from many different angles by society as a whole.

Placing value on diversity in the context of equality and participation, reciprocal

understanding of each other's needs and solidarity when satisfying these needs
all strengthen the foundation we need to build a “society for all”.

2. THE ADVANTAGES OF SOCIAL COOPERATION

More than two thirds of humanity do not benefit from the new model of
economic growth. Ecological imbalances have become more acute and the
statistics that quantify the differences between the rich and the poor should
put us all to shame. The laws of the market cannot distinguish right from
wrong, but are biased towards the powerful to the exclusion of everyone else.
Society appears to be anaesthetised in the face of all these problems, the signs
of the times in which we live.

The constant decrease in the number of people who vote in elections in many democracies is
interpreted by sociologists as a growing divorce between society and politics. The general
public is getting less and less involved not only in politics, but also in other kinds of civic
activities. In the United States, there has been a decrease in the number of meetings of
associations (the average was one a month in 1976 as opposed to 5 a year in 1996) and the
implication of the general public in community activities (7% of Americans dedicated part of
their time to community organisations in 1965, whereas in 1996 this proportion had dropped
to 3%). There has also been a drop in attendance at religious ceremonies. People meet each
other less and receive fewer visitors, (a decrease of around 45% since the sixties) and make
fewer visits on their friends. Family life has also been affected (Americans have 30% fewer
family dinners than they did in the seventies and the probability of parents chatting with their
children or watching television together has been reduced by one third).

Extract by Robert D. Putnam and Thad Williamson. Why aren’t the Americans happy? El País,
7th March 2001, Madrid (Spain)

Federico Mayor Zaragoza, former director of UNESCO, has stated irrevocably

that we must fight the “pessimists” because they have always facilitated
oppression, injustice and barbarism, and has challenged the “silent

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intellectuals” to face up to social inequalities. Gunter Grass sustains that "we
can be defeated in our commitment as a result of indifference". Along the
same lines, Ignacio Ramonet, director of Le Monde Diplomatique, has said that
there is a general feeling among European intellectuals and politicians that is
known as the “TINA syndrome” (There Is No Alternative). Turning these
feelings of impotence around is the first challenge we face. That is where the
transformation will begin: when Civil Society believes in its capacity to stem
these growing inequalities.

"I am convinced that political solutions can also be reached through a humanist approach.
Part of the tragedy of the world is that politics is disconnected from humanism. The question
is, why do we not return to base, to humanist priorities?"

Ruud Lubbers, ex Prime Minister of Holland, maximum figure of the United Nations High
Commission for Refugees (ACNUR). El País Semanal, 27th May 2001, Madrid (Spain)

The second challenge is cooperation. It is a question of changing the “I can’t

do it” spirit to “we can”. In this sense, a movement has been palpable for some
time that reaches beyond specific initiatives and isolated problems or groups.
It is a movement fighting for the inclusion of all those who are waiting for their
human rights to be recognised (women, people with disability, immigrants and
displaced persons...), side by side with people who are searching for a fair,
sustainable development in a healthy environment. This alliance of
heterogeneous groups is the example of a society that is beginning to defend
diversity as part of the wealth of social capital. The ultimate aim of this
movement is to close the gap of exclusion to build a social environment where
there is a place for each and every one of us.

Combating the risk of exclusion is one of the major challenges we face. Each
one of us lives with a degree of risk or social vulnerability, as anyone of us
may be affected by an undesired event that erodes our socio-economic position
and our ability to participate fully in society and influence social exchanges.
How vulnerable each of us is will depend on individual factors, such as our
personal traits and those of the group we belong to. These characteristics
serve as indicators of how we will be affected by adverse events. Coupled with
the protection measures provided by society (social mechanisms that favour
and maintain social integration), they will determine how we respond. Society
must, therefore, meet the challenge of trying to minimise social risk and
providing the necessary safety measures to palliate the effects of adverse
events.

From the conceptual standpoint, cooperation has evolved from the paternalistic
criteria of providing “aid” to the underprivileged, to encompass proactive
initiatives designed to eliminate the precarious situations that lead to exclusion
and to achieve more equitable development. The shift has been away from
addressing specific needs once they have been detected to trying to prevent
their occurring, in a change that reflects a broader concept of solidarity. The
new paradigm calls for taking on other people's needs as our own and working

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together to guarantee human development and dignity.

One of our major challenges today is approaching the phenomenon of

globalisation from the perspective of solidarity to correct the enormous
disparities separating rich and poor countries and to bridge the gap that
separates countries, communities and people who enjoy growth opportunities
from those that do not. Advances in the field of communications have helped
foster an intercultural dialogue that aids us in pinpointing the malfunctions of a
development model that is reaching the saturation point. There is still time to
redirect this development, and correct the deviation which is in danger of
leaving traditionally less favoured groups of society without any possibility of
development at all. Far from an anti-globalisation movement, what is being
advocated is a movement that seeks to divert the current tide away from
creating greater social exclusion, towards models based on equity. This
movement is not exclusive to people with disability, but champions the rights
of anyone at risk of social exclusion.

The expansion of the volunteer social movement is one of the symptoms of

this transformation as a reaction to unfair models. In contrast to the increasing
competitiveness and commercialisation of social relationships, the option for a
lifestyle based on solidarity is becoming steadily more popular. Among the
reasons behind this choice, there are two aspects of particular interest: on the
one hand, a rejection of the current model that breeds fierce competition, the
repercussions of which are beginning to be palpable in all aspects of life,
including health; and on the other, the search for personal satisfaction.
Surveys that examine the factors that contribute to good mental health
highlight that people who dedicate part of their time to activities of solidarity
enjoy greater levels of wellbeing. These people have the sense that they are
working to help develop networks that address specific needs and where
relationships can thrive in a spirit of social generosity.

Social marketing is another exponent of the change in the value we place on

solidarity and cooperation. Large companies have been quick to see how
projecting solidarity contributes to their prestige and even helps bolster the
bottom line. For large corporations, it is both socially and economically
profitable to cooperate in solidarity programmes with organisations from the
third sector. The organisations receiving help are likewise favoured, not only
by the funds they are given, but also by the social "publicity" implicit in these
actions. Finally, consumers have a better opinion of companies that collaborate
with the third sector and show this when they purchase products.

The movement backing the Tobin tax is another practical example of a new
idea of cooperation, based on the increasing social awareness that the
economic results of globalisation need to translate into a better distribution of
resources. It is a question of combining social equity with efficiency in the
public management of resources and of ensuring that the shocking distance
between the rich and the poor does not get bigger. The idea, presented by the
winner of the Nobel Prize for economics James Tobin, consists of levying a

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small tax (0.05%) on all transactions in the international money markets, and
devoting the money thus raised to improving the quality of life of all the
planet's inhabitants.

2.1. Citizens with a social conscience

There is an evident lack of harmony between the non-profit sector where

dynamic organisations are responsive to shifting needs and public institutions
and governments whose unwieldy structures make them much slower in
responding to society's demands. But it is also equally true that both sectors
have room for improvement: The efficiency of both can be increased with
measures to streamline their operating systems on the one hand, and the
moral and ethical efficiency of their actions on the other. Whatever actions
they undertaken should have the double objective of solving a specific issue,
and of generating the bases for a more decent society in which the population
can aspire to full citizenship as described by Marshall:

1Legal citizenship, which includes all the rights of the citizens in questions
concerning the Law,

2Political citizenship, which includes all the political rights, such as the right
to vote or to hold public office, and

3Social citizenship, which includes the rights of the citizens to certain social
services such as healthcare, education, employment, social security, etc.

Citizenship that does not include a broad social component is second-class

citizenship. The first two types of citizenship, legal and political, do not alone
guarantee citizenship for all members of society. In fact, without social
citizenship, legal and political citizenship lose a great deal of meaning, as being
a member of a group with no economic or social power means not having full
rights, not receiving the same treatment before the Law, not having the same
opportunities for being elected to a public post. Without social citizenship, legal
and political citizenship are lame forms of citizenship.

2.2. The moral and economic competitiveness of solidarity

Recognising and valuing human diversity constitute one of the greatest

challenges facing our societies today. It is not an easy task, and will require
overcoming myriad economic and social processes built on preconceived ideas
as to what is normal. These processes have long excluded people with
disability and many other groups from mainstream society, and this has
seriously undermined their opportunities for participation.

A classic example of these excluding processes is the design of transport

systems and public buildings based on the physical characteristics of the
“average citizen”, with a complete disregard for people with motor difficulties,
the elderly or children. Any member of society whose physique is outside the

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"standard" is barred from the opportunities enjoyed by the “average” person.
The result of design practices that are blind to diversity is not only the
exclusion of many people from access to goods and services and participation,
but a simultaneous impoverishment of the overall quality of the design and
efficiency of these transport systems and buildings as well. As the transport
authorities that have put adapted buses in circulation have seen, we have the
technology necessary to eliminate many barriers and are now able to design
spaces where many more people can conduct many more activities with
greater ease, comfort and safety.

In economic terms, structural exclusion and discrimination, as a result of a

disability or for any other reason, undermine the efficiency of the economic
system and of the labour market. A market which fails to take advantage of a
considerable proportion of its human resources can, by no means, be
considered either efficient or fair.

Society as a whole is affected when the capacities of people with disability and
of any other excluded person are neither recognised nor utilised. If people with
disability and other excluded groups are allowed to join the labour market,
employment becomes a reality for large numbers of people. Having a job will,
in turn, give these people greater autonomy and independence, with all the
material and mental wellbeing this engenders. Because there are few channels
to tap this great human potential, it is wasted and our levels of social cohesion
are lowered, leading to a drop in economic competitiveness.

Exclusion and discrimination on the grounds of disability or on any another

grounds actually engender a significant economic burden for the Welfare State.
A good many, if not most support programmes for people with disability and
other vulnerable groups which have been implemented in the past consist
basically in providing for the maintenance of dependent citizens, but do not
consider how to help them become qualified to support themselves.

Reducing the dependence (and the mentality of dependence) that isolates the
person with disability and creates, at the same time, a burden for the State,
would be beneficial for everyone. Changes of this nature would generate
attitudes, opinions and effects that would be highly valuable for society as a
whole.

Developing the social capital of a community so that all of its members can
participate, show their solidarity and feel positive about themselves is a way of
laying the foundation for a better future for all. Developing a strong Civil
Society is closely linked to achieving a healthier society, with better physical
health levels, and where the public feels safer. It has been said on many
occasions that democracy is not possible without participation. This idea can
also be extended to saying that the health of a democracy can be judged by
the level of participation and sense of belonging of its members.

Encouraging respect for human dignity and the integration of diversity are

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concepts that form a part of a global approach. They find their place in a social
model of inclusion that recognises in the diversity of its members the richness
of its ecosystem, and that seeks to sustain and develop this ecosystem as a
way of transferring wealth to society as a whole

2.3. The Disability Movement and cooperation in a spirit of solidarity

The long-standing political response to disability has been to provide social

compensation through charity in a strategy that removed the problem from
society's mainstream and circumvented the need to develop specialised social
services. While proffered with the best intentions, this treatment has only
served to emphasise the problem of exclusion and marginal participation. The
absence of people with disability from the public stage, or their virtual
“invisibility” in daily life has fed popular stereotypes about them that have, in
turn, only perpetuated their social exclusion. An undeniable link can be traced
between these prejudiced attitudes, the denial of equal opportunities and the
inappropriate treatment of people with disability.

Today, this situation is generally accepted as unsustainable. Our thinking has

evolved to our recognition of disability as a form of social diversity, and our
understanding that human diversity can best be harnessed if we create
economic and social processes that uphold the equality of all members of
society. The basic principle of equality, understood in our context as equal
opportunities, is currently considered to be the obligatory point of reference for
all economic and social structures. It is the idea behind the recognition of
human rights for all members of society. Obviously, the principle of equal
opportunities includes, among other things, the principle of non-discrimination.

The organisations that represent people with disability have worked

unceasingly to have disability recognised within the framework of equal rights.
They believe that the focus must shift from the provision of aid, to positive
change in terms of opportunities for employment and participation in society.
Precisely because people with disability yearn to become active members of
the community, the crux of every message and debate about disability must
centre on the issues of human dignity, self esteem and the right to equal
opportunities.

People with disability assert their right to pursue the opportunities life hands
each of us; they want to prepare to step into a relevant social role by getting
the right education and to participate fully in society through employment. Not
only do they claim these rights, they feel it is their duty to contribute to
economic and social development. Citizenship based on equality means more
than the mere right to protection: it also means accepting duties in return.
People with disability claim not only the right to participate fully in society,
they also claim the right to contribute on equal footing. The disability
movement is inspired by the pursuit of fundamental human rights, and this has
led people with disability to demand full inclusion in society, as opposed to
exclusion, independence and self-determination, as opposed to dependence

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and support and as opposed to paternalistic attitudes.

This change in perspective is behind their demand that people with disability
be offered the same opportunities to prepare for life as anybody else.
Specifically, they are asking for all educational and training programmes to be
opened to disabled children and students. However, if this is to happen we will
have to own up to the fact that the instruments that facilitate participation in
daily collective life, such as transport and communications facilities, have in
the past excluded people with disability, and we will have to look for ways to
eliminate these barriers to participation. In response to the demands
articulated by the disabled population, we are now looking at the barriers
erected in our environment that prevent the effective participation of people
with disability. Some of these barriers are physical, others reside in our mental
attitudes while others keep people with disability from using communications
systems; all of them, however, prevent people with disability from contributing
their talents to society. When we talk about overcoming barrier, the area of
employment, a fundamental form of participation in our societies, has become
a crucial matter of concern.

People with disability aspire to nothing other than “integration in daily life”. To
make this a reality, it will be necessary to devise policies that promote the full
participation of people with disability in economic and social processes,
respecting, at the same time, individual needs. Another crucial point is that the
issues affecting people with disability should not be viewed separately from the
rest of society, but should be fully integrated in the mainstream.

The growth and the development of civil societies, the participation of groups and activists
who defend people with disability, the practice of convergence and the inclusion of questions
of disability in the functions of all sectors, together with greater levels of awareness and
improved mechanisms for communication, will be the confirmation of a world without frontiers
for the rehabilitation of people with disability. The existing gap between knowledge and its
application and the property of knowledge among final users will be reduced thanks to the
effective management of knowledge and thanks to changes in management strategies

Dr. Thakur V. Hari Prasad, Chairman of the Rehabilitation Council. India.

Focusing the issue in this way is beneficial not only for all people with a
disability, regardless of its nature and severity, but also for society as a whole.
The fight for the rights of people with disability, like the fight for the rights of
any group that is excluded, is a fight for a better society, one which is more
respectful all of its members. The way people with disability have chosen to
defend their human rights provides a paradigm of how modern societies are
called to accept differences and diversity in a spirit of cooperation. Through
solidarity, we can apply today's technical advances to help achieve better
quality of life for everyone.

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3. COMPETITIVENESS AND SOCIAL COHESION: OPPORTUNITIES FOR
INTEGRATION AND INCLUSION THROUGH SOLIDARITY

In what turned out to be a very turbulent process, the 20th Century tried out
and discarded a series of social theories that all in their way contributed to the
society that we know today. The last century saw the birth of the Industrial
Society with its accompanying advances in production and management
techniques, to ultimately reach the insight that social cohesion is fundamental
to modern collective life. Throughout the century, the different disciplines that
make up the "management" sciences were assayed and honed. Through trial
and error it became apparent that the systems based on Taylorism that initially
increased productivity were incapable of maintaining desired rates of growth. It
also became clear that personal motivation and a sense of collective
satisfaction depended on more than material conditions, and that people had
other aspirations that were more difficult to fulfil. Yet, when these expectations
were met, they contributed to creating wealth, and spurred the distribution of
this wealth through systems of social protection and structures based on social
solidarity.

Likewise, while these gains were palpable in the lives of all workers, and as
new changes were implemented in step with the technological and managerial
advances that made them possible, it became evident that this greater
economic productivity did not automatically lead to a better and greater
distribution of wealth and of the resources available. Just as it eventually
became evident that there were limitations to the Taylorist techniques that had
gotten the industrial society underway, we began to discern that it was
impossible to continue to increase the competitiveness of our markets if they
were rife with social inequalities and if large segments of potential customers
had no access to them. We began to see that the ills that afflict our societies,
a patent double standard and little social cohesion or diversity, actually act as
deadweight that prevent the dynamic expansion of our markets.

Real modernisation is much more that the application of technical advances

and economic fashions. It results from an increase in the competitiveness of
our institutions and corporations, when the rules of efficiency and competition
are well-oiled and when strong systems that encourage social cohesion are in
place. These conditions lead to the accessibility of the goods and services
provided by our public institutions and markets. It is impossible to conceive of
a modern society where these goods and services cannot be enjoyed by the
majority of those who wish to participate actively in the economic and social
life of their communities.

3.1. Globalisation that benefits all citizens

Aware that they must reach as many consumers as possible, open societies
broaden their perspectives through continuous advances in processes and
productivity. And today’s unrelenting technological changes have ultimately led
to the globalisation of markets, projecting them beyond the confines of each

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individual State, so that now it is possible to do business in another country
without actually having to go there. Globalisation, outsourcing from distant
markets and new distribution and mediation formulae have all pushed back
barriers and shortened distances so that we can trade throughout the world
surmounting the impediments of distance and isolation.

These advantages, however, are not experienced by all citizens in the same
way, regardless of their economic capacity or desire to participate in economic
and social life. Nor have these advances reached all the corners of the planet in
the same way, and today, globalisation is limited to the markets of advanced
societies. It is most firmly implanted in places where a larger pool of resources
combines with a sharper awareness that equal opportunities are important and
that the barriers that limit competition and collective participation in the
world's markets must be brought down. Furthermore, despite the globalisation
of markets, what has yet to be globalised is access to these markets, and even
in the most advanced countries very little has been done to correct the
circumstances that lead to the exclusion or discrimination of certain groups,
such as people with disability. Societies, of course, differ greatly from one
another, and the perception of disability is far from globalised. Disability is
seen in a different light in Sub-Saharan Africa than in the European Union. And
indeed countries like Sweden which has been working for years in favour of
inclusion have a different view than their European neighbours’. We cannot
conceive of the same opportunities of access in certain countries in South
America as we can in technologically advanced markets such as California or
the eastern seaboard of the United States.

So the reality of disability is highly varied and cannot be considered in global

terms. If we examine disability in Europe, to give an example close to home,
we see that there are around 40 million Europeans with disability. This means
that approximately 10% of the population of the countries of the European
Union have some kind of disability. In other words, they are blind, deaf,
wheelchair-bound or have a lower than average intelligence quotient. Being
disabled means that, objectively, these people start out with a disadvantage,
of greater or lesser severity, yet a disadvantage nonetheless, when compared
to their fellow-citizens. This means that for people with disability, opportunities
in the fields of education, economics, employment and social development are
greatly reduced.

Translated into day to day terms that speak eloquently, people with disability
are much less likely than their non-disabled counterparts to reach or complete
higher education, unemployment levels among them are shocking, at twice or
even three times the rate of the rest of society, and the few disabled people
who do work generally have jobs requiring little or no qualifications, meaning
that they are poorly paid. If we add to this the fact that, more often than not,
they must put up with prejudices and negative attitudes with regards to their
possibilities and capacities as people and members of society, we contemplate
a desolate panorama which is badly in need of reform if we wish our societies
to be open, modern and barrier-free. Change is all the more needed if we seek

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the economic competitiveness that follows the social cohesion that is, as we
have seen, the hallmark of a modern society.

Above is a snapshot of the disheartening reality that awaits people with

disability in the majority of the countries of Europe. Yet, in less developed
countries and impoverished societies, the situation tends to be even worse.
This harsh reality affects individuals, groups and society as a whole, and it is in
urgent need of solutions. What have the most advanced countries, the
emerging centres of power that generate decisions capable of changing our
lives, done and what are they doing to modify or remedy this situation? When
are they going to begin to apply the norms and regulations established by
international organisations, with all that would mean as a stimulus and
example for the rest of the world?

The answer is that precious little has been done, at least until very recently.
On the one hand, because no special attention has been paid to the problem,
no real policies have been aimed at the disabled population. Likewise, and this
is the crux of the matter, because the political will to build a social Europe has
not existed until now, and because, until recently, we have not been aware of
the cost of social exclusion, particularly as it affects people with disability.

However, recent changes in some countries show that new attitudes are taking
hold, and there is now a political will to strengthen the social dimension of
Europe. Special attention is being lent to the issues affecting people with
disability and concerted efforts are being made, particularly, to help them join
the labour market.

Although they may only be faintly perceived by society at large, the

foundations of a social and employment policy for people with disability are
being laid in developed countries, and both people with disability and the
remaining members of society should encourage this initiative and help it
grow. It is based on the integration of people with disability into the
educational and productive systems and into all levels of social activity. Of
course, these measures alone will not eliminate the multiple barriers that keep
people with disability from participating on the same footing in all facets of
collective life, in education, employment or elsewhere. Nor do they provide the
tools to help each citizen fulfil the kaleidoscope of expectations we all cherish,
with the hope of being the masters of our own lives and to live in environments
where each and every one of us can contribute to improving the lives of our
fellow citizens and of the rest of humanity.

These hopes and concerns for a Society for Inclusion rather than one that
tolerates exclusion are, unfortunately, still in their infancy. What is more, they
are not shared throughout the world in equal measure; in countries where,
even at the beginning of Third Millennium, poverty and underdevelopment
mean that people are unable to live dignified human lives, these values are
scarcely even perceived. In the legislations of many of the most advanced
countries in the world, these values have found no place. When included, they

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are expressed in the vaguest terms that need to be hammered into useful tools
day by day, even in places like the European Union. However, this is the task
before modern societies, endeavouring to define a social dimension where
competitiveness and social cohesion are not irreconcilable, and where there are
no impediments to the human development of 40 million members of the
population.

3.2. The non-profit sector and the Social Economy: Initiatives for
inclusion

A new society that promotes economic competitiveness alongside social

cohesion requires and advanced and precise legislative framework. However,
this alone will not bring about profound social change. Both the protagonists of
this change and the rest of society will have to work hard to establish policies
and practices that support solidarity and cohesion. Mechanisms and business
initiatives will have to be devised to ensure that people with disability have
access to education and employment and participate fully in all levels of daily
life, including leisure, political and cultural activities. The inclusion of people
with disability in all of these spheres must no longer be seen as unusual, but
must be something that is expected as these people begin to exercise their
unalienable rights, just like anyone else.

These practices will also mean that competitiveness will go hand in glove with
the social inclusion we all long for. However, we must understand that it will
not happen merely by trusting in the new opportunities ushered in, for
example, by the technological changes that are creating new, less localised
economies. Gains made both in social cohesion and in opening new markets
will have to be reinforced with specific efforts and plans, together with
specialised policies. These efforts cannot let up until integration becomes the
norm, and specific support becomes redundant.

One of the building blocks to a more cohesion society is the decisive

contribution of the “third sector”, or non-profit organisations (in their different
legal configurations) and companies operating in the Social Economy. On the
one hand, they play a key role in detecting social needs and in providing
remedial services that complement public policies. In other instances, they
step in and substitute official programmes when these fall short of their
objectives. Finally, the non-profit sector is one of the driving forces behind
economic development, as it generates considerable economic activity and
employment in modern society.

In this sector there are important initiatives that are bearing fruits and whose
projections are promising for the first decade of the new millennium. Non-
profit organisations are successfully developing markets and conducting
business without compromising policies based on solidarity. An example is the
Spanish ONCE (Organización Nacional de Ciegos de España – National
Organisation of the Blind of Spain) which is using its business acumen to reach
out to other sectors of disability, with models that can be replicated in both

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institutional and corporate settings and that incorporate business practices that
are as competitive as any in the private sector. It is the goal of the ONCE to
expand its activities to reach a wide range of disabilities through the
Foundation it has created for this purpose. Since its creation, the ONCE
Foundation’s stated corporate mission is to help people with disability reach the
labour market and participate fully in the life of society. It has endeavoured to
demonstrate that this is not only possible and morally desirable, but also
competitive and profitable as well.

Hence, at the beginning of the 21st Century, activities conducted with a social
purpose in the productive sector such as those mentioned above have led to
cooperation projects between institutions and corporations that have helped
thousands of people with disability train for jobs and subsequently become
employed. These are a few examples of how some of the aforementioned
strategies for social cohesion and inclusion have been shaped as active
policies.

The success of these initiatives merely confirms society's receptiveness to the

entry of people with disability. These experiences also prove that corporate
competitiveness is in no way compromised by social solidarity, but quite the
contrary. In these cases, corporations have succeeded in utilising the
capacities of all their workers while adapting production processes to the
capabilities of their employees. This means that with confidence the
experiences gained in these pilot programmes can be extrapolated to the
business sector in general tomorrow. And when the day comes when these
practices become widespread, it will no longer be necessary to maintain special
policies and plans to reinforce the entry of people with disability into the work
force.

Some businesses have adopted practices, as we have seen above, that have
succeeded in implementing economic activities with a positive impact on social
cohesion. These firms pursue two closely bound objectives: optimising their
business results (competitiveness) and conducting activities that are efficient in
building a more cohesive society (solidarity). Their goal is to integrate
everyone, without exclusion, in the economic process and distribute the wealth
thus generated in an egalitarian way. These activities are now being
considered as articulating the "Social Economy", a segment of the economy
that is gathering force in developed countries and that is the very backbone of
developing areas, as it generates more employment and more enterprises
today than the mainstream economy.

In the words of Marcos de Castro, Chairman of CEPES (Confederación

Empresarial Española de la Economía Social - the Spanish Federation of
Companies in the Social Economy), “The Social Economy, and the companies
that comprise it, represents a specific economic sector, with its own
personality, and should be considered as such. Its goal is a business one, to
generate wealth, but to do it for the collective and in a socially responsible
way: it should have a positive effect on all the people who took part. It is

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never based on personal gain, but understands that the economic results of a
business activity based on the efforts of a collective must have positive
repercussions for everyone who participated."

A company in the Social Economy is the sum of the efforts of all of its workers.
These efforts, often unassuming and silent, but no less valuable for it, go
towards getting the job done without losing sight of "the other", our travel
companions on the business adventure. Each worker understands that work
itself, the means to create wealth, belongs to the people who perform it.
People contribute their personal savings and their dreams and, at times,
everyone is called to believe in utopia, in this case a utopia that can be
reached through hard work in a spirit of solidarity and hard work to create
wealth for the group: collective wealth that can be used by the group of
persons who have taken part in the enterprise, as it belongs to everyone.

One of the values of the Social Economy is solidarity, and this means taking a
strong stance. Solidarity is a broad and complex value, rich in nuances, whose
objective is to involve a group of people in finding positive solutions to the
problems that affect them and others: to improve their living conditions,
broaden their personal horizons, and through the achievements of the group,
allow everyone to grow. When it comes to defining what solidarity means for
the Social Economy, it is seen as the need to create economic value for the
collective, or to create companies that generate collective wealth and jobs for
everyone, without exclusion, and that promote social cohesion and inclusion.
The activities of the Social Economy are always directed towards those
segments of the population with difficulties in accessing jobs, whatever the
reason (disability, exclusion, gender...etc.).

Solidarity is so closely woven into the fabric of the Social Economy, that
solidarity is not possible without the company, or if the company fails to
generate wealth. The creation and management of profitable companies is thus
the raison d'être of the Social Economy if it is to live up to its basic principles.

3.3. Opportunities for cohesion in the Interactive Society

It boggles the mind just trying to imagine what science and technology will
have in store for us during this century, and how these advances can positively
affect social cohesion and inclusion. However, we must never forget that these
advances all carry the threat of leaving many people behind by broadening
what has come to be known as the "digital divide". With foresight, the more
developed countries are trying the devise ways of bridging this divide that
gapes between those who enjoy the multi-dimensional features of the
Interactive Society and those who cannot. Efforts are being made in the public
and private sectors to provide the stepping stones to "digital literacy" through
access to the work force and to training.

The new network technologies and their functionalities also provide endless

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leisure opportunities that must likewise be extended to the whole population.
Otherwise, the competitiveness expected from these new digital products will
be undermined if they cannot take full advantage of everything that a barrier-
free society has to offer. Once this becomes reality, inclusion will be the norm,
and we will no longer have to defend it with arguments about its economic and
social profitability.

Before this day dawns, however, we will have to convince the business
community that non-discrimination is not synonymous with a drop in
productivity, particularly in the new knowledge-based economies where
technical aids and design for all will open access to all people, under the most
varied conditions and circumstances, to highly diversified employment that is
adapted to the workers' capabilities. Throughout this process, with a view to
defining policies that can be widely adopted and monitored, the Public
Administrations must break the ground and be the first to promote social
cohesion by overthrowing discrimination and championing inclusion. They
must be the first to ensure the accessibility of their installations, of their
production processes and in the delivery of their services, making available the
technical aids required for people with specific disabilities to use them.

Thanks to strides made in reconciling these concepts, competitiveness and

cohesion are more compatible today than yesterday. This compatibility,
however, does not depend on technical circumstances or the processes
themselves, but rather on the people, institutions and corporations that believe
that these ideas are viable. They must be convinced that it is more profitable
to broaden their business plan to include personal opportunities and benefits
than to stagnate with the limited vision of economic profits alone. This limited
view leads only to the exclusion from active life of all people who do not "fit"
into pre-set situations. And these preconceptions have proven today to be
outmoded in light of the new economies based on collective intelligence,
imaginative outsourcing and the automation of processes.

The affirmations above should be placed in the new social context that is
calling into question the cult of competitiveness which, according to some of its
most enthusiastic propounders, at times requires turning our backs on social
responsibility. The crisis that has shaken our markets since the end of 2001
reflects a lack of confidence that has only been acerbated by evidence of
mismanagement and bad business practices, and is calling into question the
models that advocate competitiveness and efficiency at all costs. People now
are turning to the criteria of corporate governance. Many believe that good
governance means corporations must shoulder their social responsibility, and
be open to the integration of human diversity and respect for different cultures
and for human differences. An example of this shift in focus came during the
European Conference on Social Economy, held in Sweden in June, 2001, when
there was a debate about the need to include clauses on positive discrimination
for companies that, from the standpoint of social responsibility, implement
measures that give preference to disadvantaged groups (hiring people with
disability, helping them keep their jobs, generating jobs suitable for them,

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etc.) and environmentally sustainable projects. As people seem to be losing
confidence in old business model, a new sensitivity is growing that emphasises
that competitiveness is indeed compatible with a commitment to social
progress.

In this social atmosphere, discussions about how to encourage collective

cohesion and integrate all people in the most varied processes of productive
and social life take on a new and attractive dimension. People are beginning to
see that inclusion is a necessary element of social cohesion. More specifically,
the integration of disability can be the cornerstone of a new paradigm for the
inclusion of any kind of difference. This new paradigm will set the model for a
society where no human resources go undeveloped. Through inclusion, we will
learn not squander the human aspirations, hopes, expertise and know-how
that we all hold dear and that can only flourish if each of us is allowed to join
collective life. We must thus create a space where our own personal qualities
can be developed and thrive and where we can all contribute to building a
better life for future generations.

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 Chapter Five
ROADS TO THE FUTURE

Despite efforts to improve their plight, people with disability

continue to be the victims of the social injustices acerbated by the
widening gap between the world’s rich and poor. Many unresolved
issues remain on the agenda: health, accessibility to the physical
environment, education, employment, social and support services,
social protection, leisure, culture, sports, the consumer society, the
legal framework and the framework for participation.

Old problems have yet to be solved and on-going needs have yet to
be addressed. We need to revise our methods of intervention and
behaviour patterns to adopt more appropriate strategies to make
effective the inclusion of people with disability. This struggle is,
after all, none other than the defence of human diversity itself, the
best arm there is against social exclusion.

The last chapter of this Report examines the roads that will lead
towards a future in which cooperation, solidarity and diversity
become the foundations of a fairer, more egalitarian social order. To
define the general framework of action it considers necessary in the
field of disability, the Report draws up a series of broad guidelines
and recommendations.

1. THE DEVELOPMENT OF THE NEW MAN AND HIS RELATIONSHIP

WITH FUTURE GENERATIONS: THE VALUE OF THE ETHICAL
REFERENCE OF INCLUSION

On the threshold of the new millennium, the ambition behind the integration of
people with disability in collective life goes well beyond their mere
incorporation into all the areas of human activity. It seeks to forge a model to
combat exclusion – a model that upholds the rights to personal dignity, non-
discrimination and participation in building a better future for all humankind.
These are the unalienable rights of all members of society, whatever there
individual circumstances. The fight for the social inclusion of people with
disability is in reality being waged to defend human diversity itself. It is paving
a road that will join all societies in their struggle to combat exclusion.

1.1. Inclusion as a defence for personal dignity

The Universal Declaration of Human Rights, in its first article, recognises that
"All human beings are born free and equal in dignity and rights. They are

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endowed with reason and conscience and should act towards one another in a
spirit of brotherhood”. This statement, which is repeated in all regional
Conventions on the matter and in the Fundamental Charters of all countries,
illustrates the most crucial aspects that define human beings.

In fact, it is always appropriate to emphasise the attributes which are the

essence of all people: freedom and equality. No qualities of being, including
disabilities, can alter these two essential and basic attributes, nor can they
diminish the dignity and rights that are unalienable to all human beings. The
accidental differences between people that do exist must, therefore, be
considered in the light of the principle of non-discrimination. This principle goes
so far as to contemplate corrective measures to avoid violating the dignity and
rights of each individual, a violation that endangers the dignity and the rights
of us all.

From the concept of dignity evolve the notions of integrity, decorum, honour
and excellence, which are all severely eroded when any human being or group
of persons finds their rights reduced or threatened. Consequently, when this
occurs, all members of society, whatever their position or role, must assist in
re-establishing these rights. To preserve its own dignity, the social mass
respects and protects the dignity of all. The society that permits the violation
of the rights of individuals or groups of people cannot be esteemed to live with
dignity.

Through their fight for equality, people with disability are very slowly
contributing to strengthening human dignity on both an individual and social
level. Slowly awakening to this struggle, societies are beginning to work to
overcome the shameful situations that have led to the phenomenon of
discrimination against people with disability. Social exclusion of the disabled
has taken on many manifestations, from the lack of adequate access to
education, training and employment, to the lack of adequate access to physical
spaces, communications, information, culture, transport, sports and the arts;
people with disability have barely participated in politics and collective life;
they have been absent from the decision making process. Indeed, people with
disability have been invisible to society. Evidently, their timid but increasing
appearance in the public, national and international arenas will contribute
steadily to reinforcing human dignity and help encourage societies to improve
relationships between their members. On the path towards the consecration of
the doctrine of human rights for people with disability, it will be necessary to
work intensely, both intellectually and emotionally, so that society can
interiorise the value of diversity. This will be a crucial step on the road towards
true social integration and, definitively, towards upholding the dignity of all.

1.2. Promoting solidarity as a way of building a civilised society

The idea of solidarity means joining others to advance a specific cause. A life
based on solidarity is intrinsically connected to the concept and action towards
the integration of diversity and, consequently, human cooperation. In fact, a

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life based on solidarity requires an attitude of empathy, of putting oneself in
the place of others and contributing reciprocally, according to each person's
social role, to complement each other in the pursuit of a specific goal.

In fora on disability, there is a striking sense of solidarity among people

affected by disability. Precisely because they are all different from the norm,
they are more tolerant of others and better able to grasp differences in each
other.

Society at large, however, tends to think of people with disability as truly

“disabled”, and is blind to their talents and skills. The feeling seems to be that
the limitations caused by the disability erase all positive qualities and
attributes. To society, the person with disability stops being a boy or a girl, a
young or older adult, a member of one ethnic group or race or another, male
or female, with a specific religious faith, a member of a political party, a
worker, a member of a profession, a father or mother, a child or sibling or any
other attribute that we use to identify other human beings. All of these
misconceptions make it very difficult for people with disability to integrate in
their social environments.

The problem is that exclusion is not only an attack against the personal dignity
of its victims, it causes social damage as well. It prevents the group from
enjoying the contributions which might have been made by the person
excluded, and prevents the group from utilising the abilities and potential of all
its members. The defence of inclusion means an advance towards a society in
which all members recognise each other as such, and where all contribute to
projects that benefit the group as a whole.

Today, the model founded on democratic principles that advocates social

inclusion and integration tends to affirm the human rights of the various
groups that compose society, as an intellectual state. Now it also intends to
add a legal component to the feeling of human solidarity, without which
compliance cannot always be enforced.

However, once society as a whole, and each member individually is able to

interiorise the fact that the differences that may seem notable between us in
fact do not alter the essence of equality in terms of dignity nor the rights of
people with disability, true integration and human cooperation will have taken
a transcendental and qualitative leap forwards. In the society capable of that
leap, this will produce a natural and intimate tendency towards a lifestyle
based on solidarity.

The social mass benefits greatly when it adopts these behavioural paradigms,
principally because they reinforce the concept of the human family, helping the
collective move up various rungs on the ladder towards a better society.

In statistical terms, it represents the conviction that one of the indicators of

human development is the extension of better living conditions to as many

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people as possible including, naturally, people with disability, who account for
an estimated 600 million people throughout the world. If we calculate the
direct family members of people with disability, then the number of people
closely affected by the phenomenon would be three times higher.

Even in terms of productivity, the model of integration and human cooperation

will produce net gains for society, by affording many people with disability
opportunities for dignified employment compatible with their limitations. This
will endow them with greater autonomy and independence both for themselves
and for their families, with all the psychological and material wellbeing that this
implies. Integrating people with disability into the work force will help society
alleviate the current lack of competent manpower, belaboured by hiring
restrictions.

The best route to the desired model of solidarity, integration and cooperation is
to integrate disability into every aspect of collective life, so that it can become
a daily reality for all citizens everywhere. Disability should enter the
mainstream and cease to the considered an isolated problem and the bailiwick
of Civil Society and the non-governmental organisations specialised in the field
or in minors or racial or ethnic groups, etc. Disability should be put on the
agenda of the trade unions, professional associations, businesses and, of
course, central, regional and local governments, ministries, public services,
parliament and legal systems. While disability should be mainstreamed, it
should also remain on the agenda of specialised international fora and
organisations.

1.3. Ethics in favour of human diversity: From civilisation to decency

People with disability face discrimination that affects every facet of their
personal development. As we have pointed out, architectural and
communications barriers constitute impediments that are particularly
widespread. Unfortunately, in most of the world, the associations of people
with disability have not yet consolidated into strong pressure groups, and to
date they have had only very limited success in lobbying to reverse these
situations. An appeal once again to the paradigm of the protection and
promotion of the human rights of people with disability is appropriate in this
context, and the supranational legal framework will allow us to speak the same
language on this subject throughout the world.

When acts of discrimination are detected, we are compelled to invoke the

rights to equality, mental integrity, honour and privacy, which are always
threatened in these cases. However, if the interests of the person with
disability are to be safeguarded, in certain instances, these rights must be
balanced against others like the right to healthcare, social security, personal
freedom, access to education or access to employment.

The message should place the accent on equality, dignity and freedom. This
message is born from our collective sense of ethics and it requires society to

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act according to high standards of behaviour. Most particularly it enjoins our
political and civic leaders to set the example of ethical behaviour. Thus, our
new collective ethics must go further than simply shunning exclusion, to
actively promote a decent society. This new society will set standards of non-
discrimination and will be ever-vigilant that neither scientific nor technical
advances nor new cultural guidelines create new barriers to integration. We
must, therefore, go beyond the ethics of civility, to the recognition of personal
dignity. We must place a high value on actions based on solidarity and sharing,
to achieve a new social order. Before this can happen, though, it will be
necessary to pass legislation to create the tools to defend dignity and the value
of cooperation.

Only in this way will the models of integration establish the standards by which
everyone, each with his hopes and expectations, may develop all of his social
potential. These new standards will hail diversity and difference and will
recognise the unique value of each individual.

2. PROPOSALS FOR DEBATE AND ACTION ON DISABILITY AND HUMAN

DEVELOPMENT

2.1. New strategies for confronting old problems

Through its analysis of the situation of people with disability throughout the
world, this Report has shown that the attitudes, values and policies that the
international community established decades ago are still in force today. At the
same time, the Report shows that there is an increasing awareness of the
negative impact of discrimination, inequality, inadequate participation and the
denial of rights. These issues are relevant both for the disabled population and
the community at large, and the Report indicates that Public Authorities and
Civil Society understand they must share the responsibility of implementing
change. This change, however, will only be possible through concerted and
continuous action, motivated by the will to intervene and transform social
reality. At the same time, the Report has shown that neither the rhythm nor
the intensity of the advances that have been made and the programmes that
have been executed to date have had a significant enough impact to counter
the disadvantages people with disability face from the outset. Furthermore, in
many cases, legislation has not provided any real arms against discrimination,
nor tools that serve to stem social exclusion. This analysis of disability
throughout the world shows that we continue to be immersed in the same
problems which have, for decades, kept disability on the agenda of
international organisms.

Indeed, it was during the decade of the seventies that disability became a
world concern and, as such, was mentioned in various UN Declarations. The
approval by the General Assembly of the United Nations of the World
Programme of Action Concerning Disabled Persons in1982 opened the door to
the specific provisions accepted by the international community on disability.

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This declaration established the general principles that would be used by the
different governments in developing their own regulations and strategies
aimed at compensating for the disadvantages faced by people with disability.
These measures provided the first tools to recognise the equal rights of the
members of this collective and to establish the principle that they should enjoy
equal access to opportunities as a precursor to full participation in the
community. It would be fair to say that the World Programme of Action has
served as an instrument to standardise and give coherence to all the later
actions proposed in the field. It was the mechanism that set in motion policies
to provide services for people with disability throughout the world, while
orienting the strategies that comprise the main axes of prevention,
rehabilitation and the promotion of equal opportunities.

Thanks to these developments, disability is on the docket of innumerable

legislative bodies and has been brought to be attention of politicians and the
public at large. Something else that is extremely important is that today
throughout the world common values and principles are being propounded with
respect to disability and to human diversity in general. A different question,
but one which is also very relevant, is whether a common strategy is being
followed in the structures of intervention, and whether the methods adopted
and their focus are adequate. We need to evaluate whether enough is being
done to develop programmes and practices aimed at improving the situation of
people with disability, and whether they are being deployed fast enough to
keep up with the problem.

A recapitulation shows that the agenda for disability has not changed for
decades, as though disability were unaffected by the lightning-paced changes
that are transforming the rest of the world, and as though the process of
transformation were not bringing new risks and new threats which loom ahead
of us as both challenges and opportunities. We should stop to reflect that
despite the efforts made to alleviate their plight, the situation of people with
disability in the world continues to be marred by the same social exclusion and
injustice that have existed for decades. These problems are only growing
worse, like the breach that separates wealthy and poor nations. Health,
physical accessibility, education, employment, social services and support,
social protection, leisure, sports, consumption, legal guarantees and
participation all continue to crowd the agendas of all governments when
examining the question of disability.

We are speaking, therefore, of old, unresolved problems and of old,

unaddressed needs. From this perspective it is absolutely necessary to
consider whether the arguments we had adopted and the objectives we had
set ourselves continue to be valid, or whether they have changed with the new
social contexts we must deal with today. This analysis should allow us to revise
our methods of intervention and our behaviour patterns, to adopt the
necessary approaches to design more appropriate strategies to achieve our
goals.

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As the introduction to this chapter states when discussing the value of an
ethical reference for inclusion, human dignity and real equality for people with
disability, these issues continue to be the driving force behind all our efforts.
To reach our objectives, we know we must eradicate all forms of
discrimination, whether it is direct or indirect, and we also know that we must
exercise positive action. The combination of positive action and non-
discrimination should set the pace for all activities undertaken in the field of
disability worldwide by all the social players: Public Authorities, institutions,
corporations, companies, and organised and individual social groups. These
values and principles have been taken up by the international community, and
are expressed in the norms and the rules that it adopts; furthermore, they
have been transposed in the legislations of the majority of countries.

The international community also shares three objectives in this matter: to

prevent disability and reduce and attenuate its consequences; to guarantee full
and active participation in society; and to achieve as a high a level of
independence as possible, based on personal freedom of choice.

We are endeavouring to interpret the new social contexts towards which

society and individuals are developing, to better understand the nature of the
risks and threats these may bring for people with disability. We must devise
appropriate responses to reduce or to eliminate the impact of these threats to
safeguard the interests of those who feel threatened. In the same way, we are
endeavouring to better understand the opportunities that these new contexts
offer, so we can rise to the challenge of improving the living conditions of all
the world's inhabitants.

We know increasingly more about how people with disability live and the
factors that influence their lives, but this increased knowledge does not always
guide our strategies and almost never accompanies our actions. The support of
the international community has been instrumental in making governments
and the social agents more sensitive to the obligations that they should take
on to respond to the needs of people with disability. We have spent decades
working on the minimum requirements in this matter, drawing up multilateral
regulations, social charters, codes of conduct, specific legislation, all manner of
programmes, while the reality that most people with disability face remains
little changed. As a world community, we have taken up values that are
already incorporated into our norms and rules, but not always into our mental
makeup or our behaviour. Our expectations and needs could be satisfied if we
are able to consolidate the commitment of all the social agents behind
improving the conditions that surround the lives of people with disability.

Progress has been made, but it is not enough. To continue moving ahead, we
must forge new strategies that are coherent and realistic. The
recommendations that we forward below are all the fruit of the analysis of the
validity of the principles, approaches, methods, and specific contents of the
policies applied in the field of disability over the last few decades. With these
reflections, our intention has in no way been to be provocative, but simply to

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recast these principles, approaches, methods and practices in the light of the
new social contexts we are facing today.

The contributions and proposals presented in the next two sections aim to
emphasise a series of principles and the specific actions derived from them
which seem to us to be especially relevant. The list is not meant to be
exhaustive, but rather a synthesis of the main ideas expressed in this Report.
We maintain and reiterate the importance of the ideas, arguments, reflections
and nuances contained in the first four chapters of this document. The
inclusion of these last few lines is only to cover the tips of the infinite icebergs
glimpsed throughout the Report.

2.2. The general framework for action with regards to people with
disability: evidence, principles and criteria

The broad suggestions and guidelines presented below are intended to

establish the terms of reference for what we could call a general framework for
action in the field of disability. They are articulated around different subject
groups, beginning with a declaration of the principles inspiring the call for
action, with an exposé of the evidence supporting the position, to finish with
specific recommendations.

1º PEOPLE WITH DISABILITY MUST TAKE CHARGE OF THEIR OWN

LIVES

People with disability themselves must be the point of reference of

any plan concerning disability, and must take charge of their own
lives. The process of integration, with the help of family networks
and social solidarity, requires an increase in the social participation
of the organisations representing people with disability.

A) The person with disability should be in charge of his or her own life
and should be at the centre of this reflection. The disadvantages that
affect people with disability can be modified and reduced, since disability
should be understood as arising through the interaction between the individual
and his or her environment. This relationship is dialectic and modifiable. The
integration of the person with disability in his environment allows him to
interact with it, activate it, transform it, and adapt it to his requirements and in
line with his limitations. Making society's resources available to people with
disability will facilitate this interaction and allow people with disability to make
personal choices about how to live, and what best suits their wishes and
abilities.

The limits imposed by the environment on people with disability must be

minimised and it is the responsibility of all of society to ensure the success of
this endeavour. Changes must be made in areas that play a specific role in
integration such as healthcare, education or employment to guarantee
accessibility, and here the institutions have a greater responsibility. Finally, the

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process of personal choice and achieving independence must have legal
protection and must be promoted through the positive action of the Public
Authorities.

B) Family and support networks should be the co-protagonists of the

integration process. The role of the family has been a determining factor in
the social integration of people with disability, since it provides physical,
material, psychological and economic support in view of the disadvantageous
situations that mark the lives of people with disability. Changing social roles
and the shift away from the traditional family structure have made it necessary
to reconsider the relationship between the responsibility that society has
towards people with disability by aid through the Public Authorities, and the
support traditionally provided in all communities and cultures by family and
support networks. The capacity to lead an independent life is the natural
aspiration and point of reference of all people with disability. Not all societies
are able to contribute decisively to making this aspiration reality, nor can all
people with disability realistically achieve it. The family, therefore, must have
technical support to provide adequate care depending on the type of disability,
and must also receive financial support and incentives to providing care within
the home. Our Public Authorities must help maximise the complementary
nature between services provided by the State and those provided by the
family, and must design programmes and incentives that make it possible for
family members to work outside of the home, while caring for a disabled
member. These measures must be compatible with the right of personal choice
of all citizens in terms of the way they want to live their lives.

C) More channels should be opened for participation in society. Key to

the defence of the interests of people with disability is the participation of the
organisations that represent them in all social spheres, in collaboration with all
the social players and Public Authorities. These organisations have proven their
capacity, and act as networks to defend and support their members. Their role
should be reinforced, with guarantees that they represent their constituents
validly. Their work should be directed through specific channels, and through
their participation in the greater social dialogue, they should be expected to
achieve results.

D) Multi-discrimination erects additional barriers to the integration

process. We are often unaware of the fact that disability can be the cause of
an additional source of discrimination for people who are already the victims of
discrimination on other grounds. The risk of social exclusion that affects certain
segments of the population and minorities can be aggravated if it is
compounded by disability. To be disabled in a society which also discriminates
on the grounds of race, gender, religion or any other condition means that a
disabled person will have to surmount multiple disadvantages. Discrimination
for multiple causes particularly affects women with disability all over the world.
Our governments should espouse special programmes to correct this situation.

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2º PARTICIPATION AND VISIBILITY IN SOCIETY

The more visible people with disability are, the more they will be able
to participate in society. Building a positive collective image of
disability enriches a community’s value system and allows it to
advance towards becoming a fully inclusive society.

A) Visibility of the problems of people with disability strengthens

social co-responsibility and promotes participation. People with disability
have been living in an “invisible society”, systematically hidden from view. The
stereotypes of disability have been believed by the Public Authorities and the
media, the families of people with disability and people with disability
themselves. We must make people with disability and their difficulties visible to
society. The media have an important role to play, and must take this
responsibility on board. At the same time, people with disability and the
associations that represent them should become aware that they have a voice
in society. They need to accept that they must take charge of their own
situations; they must not allow others to make their demands for them or
adopt solutions that will affect them. Governments should make more progress
in finding ways to include people with disability in all decision making
processes.

B) Building a collective image of disability is transcendental for the

community's value system. Once we have rid ourselves of the stereotype of
disability as a stigma it will be possible to establish the image of disability as
being just one more difference in a world which is quickly learning to value and
integrate diversity. The Public Authorities have a role to play in promoting new
images of disability and the media have a major responsibility in assisting in
this task. At the same time, the images and the visibility of the phenomenon of
disability and the active role people with disability can play in society must be
based on improved knowledge of the subject itself. Statistics and qualitative
analyses of the disabled population are vital elements to quantify the scope of
the problem, so the necessary resources can be allotted to combat it. The
Public Authorities must take an active part in all of these advances.

C) Mainstreaming the image of disability. Our collective image of people

with disability is riddled with prejudices and stigmas that induce social
rejection and act as invisible barriers to full participation and integration.
Learning to live with diversity and differences will allow us to understand
disability better, and when this happens the image of disabled people will
become mainstreamed, accepted as yet another natural manifestation of social
diversity. Promoting new attitudes about disability among the communications
media and improving their relationship with people with disability will
contribute to changing the way society views disabled citizens, and will help
bring the image of disability into the mainstream, exactly where it belongs in
an inclusive society.

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3º POSITIVE ACTION AND THE COLLABORATION OF ALL THE AGENTS
ARE FUNDAMENTAL ELEMENTS FOR INCLUSION

Setting the processes of social integration into motion is one of the

most important responsibilities of our Public Authorities and it is
their job to generate the necessary conditions for the cooperation of
institutions, corporations, social agents and society as a whole,
developing coordinated and permanent positive action policies and
implementing programmes between the public and private sectors.

A) Positive action supported by the Public Authorities is a fundamental

element in social integration. Society as a whole must participate in
guaranteeing the human dignity of people with disability through non-
discrimination and real equality, and positive action is one way of doing this.
Once a community adopts the principle of positive action, it must create the
necessary legal framework to uphold it, with the conviction that
underprivileged groups must receive special treatment if they are to overcome
long-stranding inequalities and begin to exercise the rights that will translate
into equal opportunities.

The Public Authorities are responsible for taking the measures to prevent
discrimination, but these in and of themselves will not substantially change
inequality, because they are incapable of modifying the reality of people with
disability. Our Public Authorities also need to take positive action and integrate
this principle into all the social processes aimed at promoting the integration of
people with disability.

B) Integration is a responsibility which affects everyone, although in

different ways. It is necessary to redefine the social responsibility of our
Public Authorities, institutions, corporations, companies and of the public in
general regarding the integration of people with disability. It is the
responsibility of the Public Authorities to pass and enforce the regulations
necessary for positive action to be effective, but they are also responsible for
promoting programmes and action plans, for financing them and providing an
example of good practices to be emulated by society. Because the integration
of people with disability must be placed at the top of the social agenda, our
Public Authorities are compelled to exercise positive action. Only from this
leadership position in collective responsibility will the Public Authorities be able
to amalgamate the other social actors to carry out a coordinated and constant
campaign.

C) Work programmes carried out jointly by the private and public

sectors, involving the Public Authorities and Civil Society, are more
effective and more coherent. Policies for social services vary widely from
one country to another. Simply because in some places, the State's obligations
are managed in collaboration with the organised civil sector does not exempt

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the government from its responsibilities. These new alliances between the
public and private sectors to deliver programmes to specific groups of people
have proven to be very coherent and efficient. They are coherent because they
are managed by the representatives of the target population who contribute
their expertise to help devise solutions, and they are efficient because they are
often manpowered by volunteers and by-pass administrative inefficiencies. Our
laws should be revised to establish new spaces where public-private alliances
can thrive and manage programmes with the participation and cooperation of
the organisations that represent people with disability.

4º DISABILITY MUST BE A PRIORITY ON THE SOCIAL AGENDA

In a world where disability is growing and becoming ever more

diverse, closing the social and economic breach between people with
disability and mainstream society will require more resources. These
resources should be a priority in the social spending of governments,
and an ethical reference within the strategies of social responsibility
adopted by companies.

A) Disability is a phenomenon that continues to grow and that

manifests itself in new ways. Advances made in prevention and
rehabilitation reduce the impact and the consequences of disability. However,
disability is a phenomenon that is more and more widespread as a result of
poverty, poor healthcare and poor social conditions for large segments of the
population throughout the world. New factors are contributing to driving
figures up as well; wars, abject poverty and the degradation of the
environment are other direct causes of disability, an unjust condition that
undermines human dignity. The community must be made aware of the
unhealthy working conditions that exist throughout the world, where often the
most rudimentary safety measures are lacking. Paradoxically, greater life
expectancy and the general ageing of the world’s population is bringing
disability to an increasing number of people in the later stages of their lives,
when they struggle to maintain their dignity and independence in the face of
severe impairment. Each one of these new forms of disability requires specific
treatment and additional economic resources, along with new forms of social
intervention.

B) Full and effective participation in society requires making more

resources available to people with disability. Independence and freedom
of choice are the keys to guarantee the full and active participation of people
with disability in society. Disability is a manifestation of human diversity and
the differences between the people who comprise society, and the full
incorporation of every member can only enrich the community as a whole.
However, the full participation of people with disability will only be a reality
when they themselves are allowed to take charge of their own lives. Full
participation means more than exercising civic rights and duties; for people

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with disability, it means exercising the right to equal treatment and equal
opportunities every day. Freedom and participation are not simply formal
questions; if they are to be fully exercised, people with disability must have
the same access to goods, services and opportunities as the remainder of
society. More resources are required if people with disability are to overcome
the initial disadvantages they must overcome to take their rightful place in the
general social context of their communities.

C) Current economic development does not reduce the breach

separating people with disability and the rest of society. The effects of
recent economic growth have not been neutral and, far from contributing to
closing the gap between developed and underdeveloped economies, they have
widened the breach between them. Likewise and closer to home, sectors at
risk of exclusion are now worse off with regards to the rest of the population
than before. The distribution of growth in society exaggerates the differences
between segments of the population. People with disability continue to be
confined to the fringes of society and, in less prosperous countries, they
comprise the most vulnerable segment. For growth to be sustainable, it is
necessary to offer people with disability real opportunities. However, it is also
necessary for us to learn together how to recognise the new risks and
challenges before us if we are to reduce the uncertainties, eliminate the
personal disadvantages and permit progress in human development.

D) Disability should be a priority in government social spending. When

governments reduce their social spending, less money is available for essential
programmes in the disability sector. Prevention and rehabilitation require
significant financial resources from the public purse. New focuses consider
disability the result of the interaction between the person and her
environment, believing that it is now the environment that should be changed
and not the other way around. This attitude, applied to the world of
employment and daily life, has substantially changed rehabilitation policies,
methods and objectives. The field of ergonomy is making decisive inroads in
providing a more suitable interface between the person, his environment and
the activities to be conducted there. Our Public Authorities must support this
work and make it a priority, and if these issues are not addressed correctly
now, they will involve greater social costs in the long term.

E) The integration of people with disability should be included in the

ethical behaviour that informs responsible corporate strategies. The
new directions that the world economy is taking and the rapid process of
globalisation are changing many of the landmarks in our surroundings. The
effects caused by these changes lead us to question whether these processes
are being correctly directed and governed. Their negative effects on protection,
employment, health and the environment seriously affect all of the population,
but they affect the less favoured sectors more seriously still. At the same time,
they betray the public’s belief in the goodness of in progress and sustainable
development.

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Corporations and companies are responding to these challenges by redefining
their ethical positions and conduct. Corporations throughout the world are
assuming their social responsibility, in a strategy aimed at guaranteeing the
acceptance of universal values and establishing practices that are coherent
with these values. The value systems we all cherish and the ethical norms
implanted within our communities and countries compel corporations to act
ethically towards people with disability. Working with the organisations that
represent people with disability, corporations must design and establish
objectives, and identify the actions necessary to guarantee the effectiveness of
the regulations that safeguard the incorporation of this minority. Codes of
conduct that cover corporate responsibility are ideal instruments to give people
with disability access to the positive effects of growth.

5º THE NEED FOR NEW STRATEGIES AND APPROACHES

New strategies and guidelines for disability must be designed to

respond to today's new environments and circumstances. Priorities
should be education and employment to create a solid social network
supported by the principles of non-discrimination, positive action,
mainstreaming and specialisation. The mechanisms designed to
promote these must be appropriate for territorial factors and must
contemplate disability as the right to be different, in a spirit of
respect for diversity.

A) It is necessary to change strategies and approaches. If we accept

that, despite the advances that have been made, inequality still exists and the
agenda to address the problems associated with disability not only continues to
be unresolved, but also has hardly evolved over time, we must ask ourselves
whether we have adopted the right approaches, or whether our strategies are
inadequate and applied to social contexts we do not know how to interpret.
Since the values and norms proposed have been fully accepted by the
international community, it is, therefore, time to question the methods and
strategies applied in the field of disability to redesign new ones that are
adapted to the new circumstances surrounding people with disability.

B) Focusing on the general disability agenda does not prevent us from

setting priorities and time frames to implement each action. The issues
that comprise the international disability agenda are relevant and coherent,
and should be contemplated as a whole. Nevertheless, it is still important to
set priorities and objectives that can be met in the short and medium terms. In
our societies, education and employment are particularly significant, as they
are intricately linked to the processes of social integration. Exclusion from the
mainstream educational process perpetuates disadvantages throughout a
person’s life, as it makes interacting with others difficult, confines the person
to solitude, undermines the person's dignity and causes resentment.
Unemployment further puts the person at risk of social exclusion, making her
irrelevant in the eyes of others, preventing her from feeling useful in the eyes
of society and lowering her self-esteem. Education and employment should be

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given absolute priority in all actions implemented by governments in favour of
people with disability. These are two key factors in the process of social
integration, the pillars that support equality and dignity, the necessary bases
to truly exercise freedom.

C) Mainstreaming is a stepping stone to integration that does not

exclude specialised action. In the world's most developed countries, social
intervention in the field of disability has on many occasions been based on
segregated attention through special services. While this model may be
coherent with the special requirements of specific groups and corresponds to
specific aspects of disability, interventions designed to mainstream disability
and provide services through the general mechanisms available to all members
of society are advantageous from all standpoints. Through mainstreaming,
diversity and differences can be accepted from infancy, in the classroom, in
games, in transport, in personal relationships and over time, can come to be
considered to be quite normal. Similarly, all the goods and services available in
society should be designed to adapt to more heterogeneous needs, taking into
account the differences that exist between individuals. Mainstreaming helps
use economic resources more efficiently, and makes it possible to fine tune the
expert services that must be maintained, providing specialised attention more
effectively in areas where they are necessary. From the outset, therefore,
social intervention regarding disability should include the specific focus and
methodologies of mainstreaming.

D) Disability has different implications depending on the social

environment, and must be addressed in different ways. Sustainable
development must be geared towards the incorporation of people who live in
rural areas into economic and social progress. However, current economic
growth is leading to high concentrations of the population in urban areas, to
the detriment of economic activities in rural settings. At the same time, the
priorities on the governments' social agenda tend to concentrate intervention
in the urban population, leaving people in rural areas to look after themselves
and to rely on their families and inter-group solidarity. Likewise, in rural zones,
fewer and fewer resources are devoted to rehabilitation through healthcare,
education or labour integration services. The consequence of these factors is
that people with disability in rural areas are at a greater disadvantage, and
their problems become more severe because of their isolation, while the
opposite should be true: precisely because of the rural setting it should be
easier for them to contribution to the community's life because of simpler and
easier access.

E) Accepting impairment as a difference will allow refocusing

rehabilitation. It is necessary to revise the concept of rehabilitation to centre
it on people with disability themselves. People with disability must be allowed
to design their own lives, and all the participants in the process must accept
that a disabled person’s impairment is merely a difference. Because it makes
more efficient use of public resources, mainstreaming rehabilitation as far as
possible should be the option of choice. Another important measure is to

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update official standards for the classification of disability, to take into account
situations that affect disability. Advances in the fields of domotics and
ergonomy, will help alleviate some of the functional disadvantages that people
with disability face in their daily lives and work settings.

6º EDUCATION AND EMPLOYMENT, KEY FACTORS FOR INCLUSION

For people with disability, education and employment are the key
factors in the process of social inclusion, the pillars of equality and
dignity and the basis for real freedom.

A) For people with disability, education must be a life-long process.

Participating in mainstream education and training programmes offers many
advantages, provided the system has specialised resources that respond to the
needs of special students. Adapting space, course materials and
methodologies, and providing the teaching staff with adequate training are
factors which will guarantee the success of mainstream education. As the
educational systems are made universal, specialised resource centres will
become more efficient in responding to the specific needs associated with
different impairments. Fora on experiences and good practices which are open
to all the members of the educational community can provide excellent
vehicles to disseminate techniques and knowledge, and to downplay the drama
that many professionals believe is associated with integrating special students
into the mainstream classroom.

Education, understood as a life-long learning process, takes on special

meaning for people with disability. The early learning begun in childhood about
handling the personal difficulties associated with the impairment when
obtaining information and acquiring knowledge should continue throughout life.
The Public Authorities should adapt educational processes to the special
characteristics of participating students with disability. Establishing personal
itineraries is a useful technique that takes into account each student’s unique
rate of learning.

B) It is necessary to emphasise the importance of employment. Access

to employment is an excellent indicator of the success of public policies aimed
at implementing the rules of non-discrimination and positive action. We know
that there are many factors that make it difficult for people with disability to
integrate into the labour force, and we know that discrimination is one of the
major ones in all societies. While some of these factors may be objective,
many others, such as prejudice, seem engrained in society and in the minds of
businesspeople the world over, although there are no objective reasons that
justify them. We also know that training, especially vocational training, can
facilitate employment decisively, although training alone is not sufficient. If we
wish to promote integration into the work force, we must eliminate
discriminatory practices and barriers, and, at the same time, we must use
positive action. Some examples of positive action used in different countries

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include reserved employment quotas, tax incentives for hiring people with
disability and aid in adapting jobs and the work place for people with disability.

C) Access to the labour market has a decisive impact on the process of

integration. While official employment services have an essential role to play
in helping people find jobs, the specific needs of people with disability who are
approaching the labour market are often not met in unspecialised offices.
Public Authorities should, therefore, fund specialised placement services for
people with disability. Proven techniques indicate that often people with
disability require placement services that begin with a diagnosis of their
technical and social skills followed by detailed professional guidance and a
customised vocational itinerary for each applicant that includes an ad hoc
training programme. Many of these itineraries will have to begin with pre-
training activities to teach basic social skills. Teaching active job searching
techniques has also been extremely helpful.

D) Mainstream employment must be the paradigm, protected

employment an alternative. The debate over mainstream versus protected
employment for people with disability is a false one. The ultimate goal of all
integration policies is the fullest integration possible of people with disability
into all aspects of society. Under this premise, efforts must be concentrated on
integrating people with disability into the mainstream labour market. However,
not all people with disability are able to meet the demands of the mainstream
labour market, and this is a reality that must be accepted. Another is that
many people with disability have not been able to obtain the professional
experience required in the job description. To remedy this situation,
governments should support protected employment schemes to provide
professional experience that can ultimately help the person with disability enter
mainstream employment. Protected employment offers a good formula to help
people with disability overcome some of the very real difficulties they
encounter when they try to join the mainstream labour market. In the
framework of protected employment, the Public Authorities should test and
regulate innovative formulae that are adapted to the social and labour
circumstances of each individual country. Today new ways of organising work
and production are being tested and these may provide opportunities for
people with disability to enter mainstream employment. New mechanisms like
occupational enclaves or sheltered employment programmes are good options
as long as they respect the autonomy of each company's organisation and do
not distort their rules of operation. Tele-working is another formula that
appears to offer good perspectives for integration into the mainstream work
force, and is a promising alternative for people with mobility problems or who
live in rural areas.

The Public Authorities must guarantee real compliance with the regulations
intended to promote employment. Quota systems that reserve a certain
percentage of jobs for people with disability in both the public and private
sectors have been seen to be effective, even though the level of real
compliance continues to be low in all countries. The Public Authorities should

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work hard to enforce compliance with these regulations and to strengthen their
formal aspects. When for well-founded reasons an organisation is unable to
fulfill its compulsory quota, it should have recourse to substitute systems to
support the integration of people with disability in the labour force. These
alternatives can include purchasing goods from protected employment centers,
or financing public initiatives that promote the employment of people with
disability. Tax incentives for companies employing people with disability help
encourage placement, while they also make adapting the work place to the
specific needs of the disabled employee seem less onerous. Companies
operating in the Social Economy may become partners with the Public
Authorities to spearhead initiatives to incorporate people with disability into the
mainstream labour force.

E) Not just any job is valid; people with disability must gain access to
quality employment. We have extensively discussed how unemployment
acerbates the risk of social exclusion, particularly for people with disability, and
how their already precarious situation is compounded by many other factors
that affect the quality of the employment secured. Poor quality jobs are
generally occupied by the weakest social echelons, because of their lack of
qualifications and because poorly qualified workers feel they must accept any
job they are offered. Corporations that assume their social responsibility should
include in their codes of conduct initiatives to hire people with disability and to
help them advance through their human resources systems.

7º UNIVERSAL ACCESS AND DESIGN FOR ALL ARE IMPERATIVE

Universal access and design for all are prerequisites before

undertaking any integration process. The implementation of these
new concepts is intended to guarantee that people with disability
have access to the basic functions of everyday life: moving about,
communicating and using all the goods and services available to all
consumers. The opportunities created by the new information and
communications technologies should promote integration, ensuring
that the digital breach does not become a new factor of
discrimination.

A) The concept of accessibility comes into its own in the context of

disability. Accessibility is the basic requirement that precedes any integration
process. Accessibility means that each and every one of the services developed
in society should, above all other considerations, be accessible to all, and
particularly to people with disability. Traditionally efforts have centered on
eliminating physical barriers. New concepts, however, have espoused a more
ambitious scope and are proactive in promoting accessibility. In a society that
is more and more open and globalised, and that is daily more immersed in the
use of communications technologies, the obstacles that bar participation are
not only physical. In today's world there are often huge barriers to
communications and barriers that prevent people from establishing
relationships with each other. Accessibility is a global issue that transcends the

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specific concerns of people with disability. The new thrust of the organisations
of people with disability is, therefore, aimed at promoting the new concepts of
universal access and design for all. The disability movement is pursuing global
accessibility in daily life to guarantee the basic functions that will allow people
with disability to move about freely, locate objects, pick them up, use them
and communicate with others. People with disability are also advocating design
for all which, when applied to the production of goods and services confers
competitive advantages and broadens the potential markets of the companies
that have the vision and courage to introduce these concepts into their
strategies. Design for all can reduce the efforts and costs of having to make
later adaptations of goods and services to accommodate people with disability,
members of the population with low levels of mobility or people with temporary
impairments resulting from old age.

B) While the new information and communications technologies

introduce significant opportunities, they introduce new risks as well.
Thanks to today’s information technologies, we have unprecedented access to
communications processes, and can acquire information and knowledge in
ways and in spaces that are very different from the traditional classroom.
People with disability can use these advances to enhance their training and
employment options.

These technologies open new vistas for social integration and active
participation in society, making it possible for more people to take advantage
of the social resources available. There is, however, a real danger of creating a
social schism between those who have access to these opportunities and those
who do not. It is crucial to implement the right measures to minimize the risks
of exclusion of people with disability and other vulnerable groups, least their
situation deteriorate yet again as a result of the new social stratification that
will emerge through the deployment of these technologies. The Public
Authorities have a decisive role to play in circumventing these risks. Access to
the new information and communications technologies will transform social
reality and will have a significant impact in the coming decades. However, if we
do not act sensibly, and if we fail to pay attention to the less favoured
segments of society, technological advances will also splinter the social
balance. Digital literacy must, therefore, be placed high on the political
agenda, to bring these technologies to every member of society, including
people with disability. If successfully adopted, these strategies will go a long
way to speeding the integration of people with disability into all of society’s
social and labour structures.

C) Access to leisure activities and culture is an essential part of social

integration. One of the indispensable features for the full integration of
people with disability is access to mainstream recreational and cultural
activities. The new information and communications technologies will make a
major contribution to eliminating the barriers that make these facilities largely
inaccessible today. It is the responsibility of the Public Authorities to spearhead
the efforts to provide universal access in these areas, and to manage these

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services according to market philosophy.

Sport occupies a very prominent place in today’s societies because of its

connotations for both health and consumption. The impact of sport in the
media has turned it into one of the greatest information products ever
consumed. People with disability must have access to sport, first of all for
health reasons. Secondly, because of the publicity sport attracts, the
participation of people with disability in high profile events will go a long way
to reinforcing a positive image of disability. The Para-Olympic Games are a
case in point. Not only do they provide people with disability the opportunity to
participate in high level sporting events, they are also a showcase in the mass
media to highlight positive images of people who are different, yet who
overcome all manner of difficulties and disadvantages to achieve their goals.

D) People with disability are the victims of discrimination when they

acquire products that are key to their autonomy. People with disability
often have to acquire products and services as a result of their impairments
and dysfunctions and which, paradoxically, are generally very expensive.
These range from medicine to prosthetic limbs, articles adapted for daily life,
adapted vehicles, appropriate foods, and a whole series of other products and
services that add up to a stiff surcharge over the price paid by other
consumers to enjoy standard goods and services. Numerous formulae, such as
organizing consumer cooperatives and purchasing centres, have been assayed
to help alleviate the burden of these additional expenses. Many countries have
adopted cost-sharing schemes, lowered sales taxes on these items or provided
other fiscal incentives in an effort to make these acquisitions less onerous.
Public Authorities should be aware that disability creates a specific market that
should be appropriately regulated.

8º HEALTHCARE, SOCIAL SECURITY AND SOCIAL SERVICES,

ESSENTIAL FOR THE FULL DEVELOPMENT OF RIGHTS

For people with disability to fully exercise their social and economic
rights, they must be included in mainstream healthcare systems, and
social security and social services. Key references in this area include
the transfer of technological and scientific knowledge, the provision
of specific care and services through mainstream insurance systems
and the inclusion of people with disability in new protection schemes
as dependents.

A) The healthcare required by people with disability should be geared

towards prevention, rehabilitation and attention to the chronic nature
of the impairment. Inequalities in the way healthcare resources are
distributed in developed countries and in underdeveloped ones highlight one of
the major imbalances in human development and dignity. What is more, many
countries fail to use their healthcare networks to the full and often manage
their systems inefficiently. All health plans, but especially those focused on the
prevention of impairment and rehabilitation, should incorporate mechanisms to

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transfer technologies and scientific progress to the weaker societies. All
advances made in biogenetics should be shared, as should technologies in
rehabilitation, within the frameworks of cooperation programmes. The general
increase in life expectancy and overall ageing of the population is bringing with
it levels of disability to new social echelons. Healthcare for the elderly should
include attention to the dysfunctions which occur with age and ensure the
rehabilitation services to palliate or correct them.

Equal attention should be given to health at work. The lack of control over
working conditions and procedures on some jobs is the direct cause of
accidents and professional illnesses, some of which leave workers with
permanent disabilities. The Public Authorities must implement and enforce
prevention and safety measures at work, a responsibility that must be shared
by the companies and all the social agents involved.

B) Social security systems do not take into account the special

characteristics of assuring people with disability. Because insurance
systems vary widely from one country to another, it is difficult to make a
general analysis of healthcare protection throughout the world or formulate
proposals for the future. Generally speaking, however, in systems financed
through workers’ contributions, standardised protection is prescribed for work-
related incapacity, the recovery and rehabilitation phase and selective
employment. In universal systems, subsystems covering the specific needs of
the disabled population often supplement the coverage provided through
workers’ contributions. The evolution of social security systems towards private
or mixed insurance models places people with disability who are unemployed
at a great disadvantage, and makes them totally dependent on the minimum
subsidies provided in each country. The difficulties people with disability
encounter in joining the active labour force, in generating an income and in
assuring their future seriously affect the conditions in which they can obtain
protection for the present or for the future. The option of taking disability out
of the contributory system further places people with disability in the slow lane
for protection and participation in social security programmes. Without denying
the need for special disability pension schemes, the Public Authorities should
test different formulae that combine the contributions disabled workers make
to Social Security plans with non-contributory schemes to compensate for the
fact that the employment patterns of disabled workers are usually shorter in
duration and more irregular than those of non-disabled workers.

The most developed countries are implementing insurance models that cover
many of the needs associated with disability and old age.

C) In most countries, social services are separate from the social

security system. As the gap between rich and poor countries widens, a
constant that remains palpable throughout the world is the close link between
disability, poverty and social exclusion. To attend to this reality, social services
are organised in innumerable ways, each with its own financial structure.
These differences notwithstanding, everywhere in the world, any debate about

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social services for people with disability should be placed within the broader
context of social and economic rights. Social services should support the
priorities of healthcare, training and employment, as they play a decisive role
in helping people with disability make the most of opportunities for full
integration. Public services should dovetail with the support the person with
disability receives from her family, and channels for cooperation should be built
for this purpose. Incentives, such as tax reductions, should also be
implemented to motivate third parties to play a more active role.

9º DISABILITY MUST CONTINUE TO BE AN OPEN SUBJECT ON THE

INTERNATIONAL AGENDA

The international community must share scientific knowledge and

advances regarding disability. In the face of the erosion of social
protection on the coattails of the new world scenario, disability must
be kept high on the international agenda.

A) The international community must share scientific and technical

advances and know-how regarding disability. The acceptance of the
inexorable existence of disability, no matter how prosperous a society is and
no matter how carefully a community controls risks to prevent it does not
relieve society of its responsibility. We are responsible towards the future
generations and towards anyone who is potentially subject to the risk of
becoming disabled and who will have to learn to live with disability. Technology
is providing us with heretofore unheard of scientific capabilities. Research,
especially in biogenetics, holds out great hope even for the immediate future.
The development of the healthcare sciences holds great potential to prevent
disability and to facilitate rehabilitation.

Society must redouble scientific and technical efforts to elucidate the risks that
affect health, and diminish and eliminate them. With the conviction that
disadvantages can be modified, the international community has the obligation
to transfer and share all knowledge and technology that will reduce the
occurrence of impairments and facilitate rehabilitation.

B) The new world scenarios are eroding social protection and opening
up large grey areas in the social structure. Because control over markets
and national economies has shifted away from the international community
and individual states, large grey areas have emerged whose impact on social
protection is already being felt. One of the immediate risks has been the surge
in precarious employment and the re-appearance of unfair employment
practices that we believed had been relegated to the past. We must strive to
make competitiveness compatible with social cohesion, safeguarding the
progress that has been made, and reintroducing security as a value which the
social agents and Public Authorities owe all members of society, particularly
the weakest.

C) Disability issues must be kept open on the international agenda. The

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vulnerability of people with disability compels the international community to
reflect collectively on how to reinforce the formal and practical aspects that will
allow the full exercise of their basic rights. These efforts should lead to the
adoption of action plans on a global level, followed by their systematic and
periodic revision to keep them ever relevant in the context of rapid social
change. The international community should plan its actions carefully in a spirit
of cooperation, and keep the issues that affect people with disability on the
agenda on a worldwide level. It must promote the principles and values needed
to sustain the action programmes it coordinates after agreeing on priorities
together with the national governments. The disadvantages that people with
disability face in many parts of the world can only be overcome through the
concerted action of the international community.

2.3. Some proposals for positive action

As a necessary complement to the consequences of the practical application of

the broad range of principles and criteria exposed above, here follows the
difficult task of translating these things into positive action. These actions are
no more than a selection from the myriad proposals that can formulated in
response to the issues discussed in this Report. We have restricted ourselves,
then, to only the most essential fields and topics where actions and
programmes need to be devised, because these are the areas that have the
most direct and immediate impact on people with disability.

PROPOSALS FOR ACTION

1. Legal protection

1.1.) In order to achieve the imperative objective of ensuring equal

opportunities and the dignity of people with disability, priority must be given
these aspects through the legal protection granted by human rights, and more
specifically by the fundamental rights that extend to all people.

1.2.) A specific United Nations Convention on Disability is extremely important.

This Convention must examine all the conceptual, legal and political aspects
required for people with disability to fully enjoy their human rights, and their
civil, political, social, economic and cultural rights. The NGOs representing
people with disability must be recognised as valid interlocutors when
defending, representing and supervising the interests of people with disability.
A Convention accompanied with the necessary instruments to monitor and
supervise the implementation of its content and to enforce compliance would
represent a qualitative leap forwards in defending the rights of people with
disability. It would serve as a centre of reference for national and regional
legislation and policies. A Convention of this nature would usher in the era of

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visibility and full participation of people with disability in their respective
societies.

1.3.) Every country’s Constitution should include a specific section that

recognises and protects people with disability in the broadest sense. This will
establish a binding principle for the Public Authorities and provide the
framework for the development of specialised legislation. All constitutional
systems should include not only the principle of formal equality, but also the
principle of real and effective equality.

1.4.) Likewise, national Constitutions should protect and legitimise the

participation of all their citizens and organisations created in the heart of Civil
Society, to provide a constitutional framework for social movements to
cooperate legitimately, and not only from a social standpoint, in the processes
of drawing up social policies.

1.5.) Legal provisions should clearly include the principle of non-discrimination

on the grounds of disability, but they should also clearly include the principle of
positive action or favourable discrimination to re-balance the initial and radical
inequality suffered by persons with disability. This will place people with
disability at the starting line under the principle of real equality of
opportunities.

1.6.) Every legal provision on the matter should adequately coordinate the
principle of mainstreaming with specific legislation to attend the special needs
of people with disability which are not covered by the general social services
systems.

1.7.) All declarations, regulations and mechanisms that provide legal protection
for people with disability should be accompanied by efficient procedures and
mechanisms to permit the material, real and effective exercise of their
recognised rights. To go beyond making mere rhetorical declarations of good
will, they should include coherent measures and control mechanisms to ensure
effective compliance with all legal provisions.

2. Education

2.1.) The principle of integration and mainstream education for people with
disability should be legally established so that students with special needs as a
result of disabilities can participate fully and preferentially in the mainstream
educational system. This does not mean that other forms of education for
those students who, due to special circumstances, are unable to participate in
mainstream education should be eliminated. When the principle of integration
in education is effectively established and applied, special education centres,
when they are necessary, should be reoriented towards formulae that promote
mainstream education.

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2.2.) The principle of non-discrimination must be established to ensure the
right to access to education of people with disability, first of all, and to
guarantee their right to pursue the education of their choice and exercise their
academic rights.

2.3.) The educational environment should be conceived, planned and

structured with the criteria of universal access and design for all, to create a
barrier-free environment. The educational system should, likewise, adapt
curricula to meet the specific needs of students with disability whenever
necessary.

2.4.) Programmes for the early detection of the special educational needs
associated with disability must be established, and the educational system
must be able to respond immediately to these requirements once they have
been detected.

2.5.) The educational system should ensure free and compulsory education for
people with disability. Likewise, the parents and/or legal representatives of
students with disabilities, or the students themselves, when appropriate, must
be able to choose the educational model and the kind of education they want
to receive.

2.6.) Special training programmes must be set up for all the personnel in the
educational system (teachers, psychologists, support personnel and other
professionals) who take part in the educational process of people with
disability.

2.7.) All of the new technologies and tools provided by the information society
should be used to facilitate mainstreaming students with disability. Special
attention should be given to distance learning options. Special measures are
needed to make sure that people with disability gain digital literacy.

2.8.) The educational authorities should grant people with disability favourable
treatment in the programmes, study plans and general grants, aid and support
schemes available to other members of society. Alternatively, specific grants or
support programmes should be established for students with disability to help
palliate some of the disadvantages they face with regard to equal
opportunities.

2.9.) The educational authorities need to implement positive action and

support schemes to compensate for the disadvantages suffered by people with
disability, to help them gain access to educational programmes and to
successfully complete them. These measures should be used to guarantee non-
discrimination in terms of access, and as ways of helping disabled students
complete their higher education, where they are clearly under-represented.

2.10.) It would be extremely useful for the UNESCO and similar supranational
organisations on a regional scale to approve binding international legal

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instruments that guarantee education for all, which would establish the
principles and criteria to be followed by all States and Authorities with regard
to educational policies for people with disability.

2.11.) The authorities, the community and society as a whole should

understand that the cost of promoting education among people with disability
is a socially profitable investment. Education is a stepping stone to economic
independence and reduces the number of dependent citizens.

2.12.) The educational system must be geared to preparing people to enter

society’s productive and economic cycles. It must be designed to facilitate
entry into the labour market, thus permitting the economic independence of
people with disability. Other vital elements of the educational system are
lifelong learning options and personalized itineraries.

2.13.) People with disability and their parents, families or legal representatives
should be encouraged to form part of the governing bodies of their educational
centres.

2.14.) Attention to diversity and special educational needs should be

incorporated into the educational system as a criterion of quality.

2.15.) People with disability must espouse the values of personal effort and
striving for excellence, as the driving forces behind socialisation through
education.

3. Incorporation into the labour market

3.1.) Governments and Authorities should reverse the current ratio between
active policies that encourage employment and passive policies to maintain
people with disability because they are unable to join the work force and
maintain themselves. Efforts should focus on promoting employment among
the disabled, while at the same time maintaining and intensifying assistance to
those persons who are unable to get or keep jobs.

3.2.) The legal systems of all countries should include provisions that make
discrimination on the grounds of disability illegal. Since discrimination often
bars access to the labour market and keeps people with disability from
maintaining their jobs, legal and administrative instruments must be put in
place for people with disability to use to exercise their right to equal
opportunities.

3.3.) People with disability must be encouraged to aspire to take an active part
of the productive system as a step towards full social integration. These
processes must be seen as a route towards personal and social fulfillment.

3.4.) Public campaigns should make society aware of the labour potential of

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people with disability. Employers, people with disability themselves and their
families must all shed the prejudices and stereotypes that still hold them back
from achieving their potential.

3.5.) Positive action must be deployed to promote employment for people with
disability. Measures like special support programmes for disabled workers, aid
schemes, tax incentives and reductions, etc., should be used to create new
ways to integrate this collective into the labour market. Different forms of
employment must be explored, from mainstream employment, sheltered
workshops, self-employment, Social Economy formulae, public employment,
etc.

3.6.) It is crucial for the social agents to take a more active role in promoting
employment for people with disability. They are the ideal interlocutors to
supervise compliance with the legal provisions that protect the rights of people
with disability and, because of their longstanding experience in similar
situations, can be particularly effective at the bargaining table.

3.7.) Public Administrations must set the right example in their procurement
practices by acquiring goods and services only from companies that meet their
legal quotas in hiring disabled workers and in integrating them into the
workplace.

3.8.) The workplace must be designed and built along the principles of
universal access and design for all, in order to accommodate all workers.

3.9.) Occupational observatories should be established to detect new sources

of employment with the potential for integrating people with disability.

3.10.) Lifelong learning should be promoted among disabled workers, with

special emphasis on acquiring the skills necessary to be competent in the
Information Society. Just like everyone else, disabled workers need to keep
abreast of developments to keep their jobs and move up the ladder in their
organisations.

3.11.) The Third Sector, both through its social branch (NGOs) and its business
arm (the Social Economy), should give priority to the objective of integrating
people with disability into the work force. This sector has an enormous
potential and real capacity to create and maintain employment even in times of
economic recession.

4. Social protection systems

4.1.) Social protection systems are a fundamental element in improving the

living conditions and quality of life of people with disability. They must provide
adequate coverage for the contingencies which may affect people with
disability throughout their lives, along with a network of social and healthcare

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services aimed at promoting the independence of people with disability and at
ensuring healthcare and support whenever it is required.

4.2.) The different Social Security systems, based either on workers’

contributions or on universal coverage, should take into account the special
requirements of people with disability and the characteristics of the coverage
they require. Measures should be taken to safeguard public insurance systems
and to keep them from evolving into private or mixed schemes that will place
the unemployed disabled population at a disadvantage and make them totally
dependent on minimum subsidies, when they exist at all.

4.3.) The Public Authorities should test formulae that combine insurance
financed by workers’ contributions with coverage from special non-contributory
funds to take into account the characteristics of the more irregular and usually
shorter working life of the average disabled worker. Because it is so hard for
people with disability to access and maintain employment, they have great
difficulty in generating enough income to allow them to ensure against the
future. If poverty generates disability, it is also true that unemployment
generates poverty and excludes people with disability from the social
protection system based on either public or private insurance.

4.4.) Special social services should be developed to respond to situations of

dependency that can arise as a result of age or serious illness. People with
disability should receive priority treatment in these models.

4.5.) Social service systems vary considerably throughout the world, and their
precarious financing is one of the factors that explain the poverty and
exclusion that plague most people with disability in less developed countries.
However, social services have a vital role to play in articulating the social and
economic rights of people with disability throughout the world. They serve to
complement and reinforce healthcare, training and employment services and
promote opportunities for integration.

4.6.) Cooperation between the social services, the families of people with
disability and volunteer workers should be encouraged as a formula to provide
better care for people with disability.

5. Healthcare

5.1.) Each country must enact legislation that establishes the right of people
with disability to adequate healthcare. The health authorities must guarantee
healthcare and medical attention for these members of society.

5.2.) It is necessary to assign more resources to cover health needs in

underdeveloped countries. The great difference in resources devoted to health
in these countries and in the developed world is one of the principal factors in
the imbalance in human development. Healthcare investments in disability

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centre on prevention, rehabilitation and attention to chronic illnesses.

5.3.) Cooperation programmes must be established to transfer technologies to

the less developed countries so that they can apply the same advances in
prevention and rehabilitation as the rest of the world. Likewise, advances in
the field of biogenetics should be shared.

5.4.) The Public Authorities and the social agents must work together in the
field of occupational health. The conditions under which certain jobs are carried
out should be improved to prevent accidents and illnesses which can bring
about disability.

6. Technological change and scientific and medical advances

6.1.) The realities facing people with disability must be considered a priority in
public policies concerning innovation and new technologies.

6.2.) Legal standards and administrative practices must be put in place to

ensure the incorporation of the concepts of universal access and design for all
in the fields of innovation, aid and support technologies and the tools of the
information society.

6.3.) Each country should include in its legislation norms prohibiting Public
Authorities and Administrations from acquiring products, services and tools
based on the new information and communications technologies that do not
incorporate the principles of universal access and design for all. Likewise, aids,
subsidies and incentives should not be awarded to private operators which do
not comply with the regulations concerning the accessibility to their goods and
services.

6.4.) Programmes that promote digital literacy among people with disability
must be put in place.

6.5.) Centres of excellence that study the interface between disability and the
new technologies would serve as points of reference for the authorities and the
private sector alike. They would provide a good vehicle to disseminate good
practices.

6.6.) The medical model of intervention should be progressively substituted for

the social model which takes into account the person and his or her
environment and which transfers the focus of attention from impairments to
the conditions of the environment where people with disability live.

6.7.) Attention must be paid to the new horizons being opened by genetics,
without losing sight of the concomitant threats and opportunities.
Independently of medical advances, we must never forget that the special
characteristics of people with disability deserve the same respect as any other

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human difference, independently of a person’s genetic characteristics.

7. Leisure, culture and sport

7.1.) People with disability must have equal access to leisure activities and
culture. The multiple barriers that prevent them from enjoying recreational
activities must be eliminated, and environments where sports and cultural
products are consumed must be accessible.

7.2.) People with disability must be encouraged to take up sport as a way of

improving not only their health, but their self-esteem. The media should use
sporting events for people with disability to project a positive image of the
collective that would reinforce the incorporation of disability into mainstream
society.

7.3.) Support of the International Para-Olympic movement and the

incorporation of these games into the general framework of the Olympic
Games would go a long way to providing a worldwide example of what people
with disability are capable of doing, thanks to the widespread media coverage
they would receive.

8. Community life and participation

8.1.) The principle of Civil Dialogue must be incorporated into the legislation of
every country in the world. Civil Dialogue provides the channel to consult the
organisations for people with disability before establishing public policies that
will directly or indirectly affect them; it provides the vehicle to make their
voices heard when drawing up proposals and decisions in the field of disability,
and when executing, monitoring and evaluating the programmes implemented.
To this end, platforms must be created to articulate the dialogue between the
Public Authorities and the organisations that represent people with disability on
equal footing on all matters concerning public policy that affects this collective.
Likewise, it is important for the organisations that represent people with
disability to be legally constituted so that they can intervene legitimately in
protecting the rights of their constituents in the face of violations.

8.2.) The best way to guarantee participation is to strengthen the unity of the
Disability Movement, by forming platforms on a continental, state, regional and
local scale to speak with a single voice to defend the rights of disabled citizens.
These platforms should serve as the Movement’s valid spokespersons before
the Public Authorities and Civil Society.

8.3.) The topic of disability should be included horizontally in each and every
public policy that directly or indirectly affects people with disability.
Independently of this measure, specific policies aimed at alleviating or
eliminating the serious disadvantages facing people with disability will also

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have to be established.

8.4.) The organisation of a “World Disability Forum” as a plural umbrella

platform to represent and defend people with disability on a global level would
represent an important step forward. This Forum would represent people with
all manner of disabilities and would group all the different types of associations
in the disability sector to provide a single voice for people with disability the
world over. The Forum would be able to speak clearly and with rigour of the
issues surrounding disability and present a shared strategic vision of the
problems and solutions formulated by people with disability. It would be the
valid interlocutor of the various international bodies and authorities with
competence in matters of disability.

8.5.) It is important to strengthen ties between the Disability Movement and

other social movements to reinforce citizen participation in constructing Civil
Society.

9. Information on disabilities

9.1.) As people with disability represent 10% of the world’s population, better
statistical knowledge of the reality of disability would make it easier to plan
and develop the right policies and programmes to meet their real social needs.
It is very important for disability to be incorporated into the United Nation’s
indicators in its Index of Human Development; it is also important for other
supranational organisations and the different countries to study the
phenomenon with rigorous statistical systems and social indicators.

9.2.) The low level of participation of people with disability in society makes
them virtually invisible, and this has given rise to many of the prejudices and
misunderstandings which, in turn, further bar them from the activities that
foster social integration and personal development. The realities of disabilities,
including the potential of people with disability, the problems they must
overcome and the actions proposed to respond to their needs should be widely
publicised. Understanding these issues is essential if we are to advance
towards a society capable of accepting and prizing the differences which
contribute to its wealth.

3. RECOGNISING HUMAN DIVERSITY IS THE KEY TO A MORE HUMANE

FUTURE

The proposals laid down above must be considered within a context broader
than the mere day to day problems of disability and social exclusion. They
endow us with the keys and levers to unlock a situation where people with
disability, and many others, are the victims of social exclusion in function of
their ability to integrate more or less successfully in society’s production chain.
Today’s society values a person on the basis of his economic usefulness, with
scant regard for his personal dignity, expectations or potential to make a

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genuine contribution to human development. This appreciation contrasts
sharply with the technical capacity we have developed, which, if applied
correctly, would allow us to successfully manage the complex situations we
face today, distribute resources fairly and find solutions that would prevent
social exclusion.

Progress towards quality in human life will be impossible if it does not include
all human beings, and if it does not uphold the unalienable rights of each and
every member of society. It is only by pursuing these goals that civilisations
can consider themselves the depositaries of the best of humankind, which is
none other than the fight for the recognition of the equality of all human
beings, whatever their capacities or unique features. The intent of the
proposals made on these pages is to inspire an authentic cultural change, one
that will kindle in the hearts of all human beings the desire to recognise
themselves in each other and treat others with the dignity they merit as
human being, rather than in terms of their function in the production chain.

But this cultural change will fall short of its goals if it safeguards only the
interests of people with disability, responding perhaps more to feelings of
solidarity or even compassion. It must extend to the recognition of human
diversity and the different conditions and life experiences that characterize
every human being. If it reached only the area of disability, and even if the
inclusion policies and capacitating programmes it were to inspire helped people
with disability integrate into mainstream social, economic and cultural life,
there would still be discrimination against other people and groups. And these
new marginal groups also have the same rights as anyone else and, through
their diversity and differences, have a great deal to offer the cultural, social
and economic spheres of a society which cannot afford to waste the resources
that reside in all human beings.

The resources and potential of each one of us are articulated through the value
of human dignity, and the capacity to relate, give and share that we all have,
no matter how bleak and desperate our existence may seem. Therefore, the
proposals laid down above have not been made only to champion people with
disability in their claim to full social inclusion. Nor do they only seek to keep
from squandering the opportunities, ideas, hopes and desires that all people
with disability harbour in their hearts, and yearn to contribute to building a
future founded on solidarity for all humankind. They have been written with
the knowledge that the future can only be truly humane when personal
differences no longer lead to discrimination and exclusion, when all people feel
and live as equals and when governments, corporations and institutions ratify
this equality in their regulations, procedures and through their actions.

Hence, beyond the references and recommendations for a more humane future
for people with disability, this Report, more than anything else, wishes to be a
call to embrace human diversity. It wishes to vindicate the recognition and
defence of human diversity as an integral part of our common heritage. This
human heritage is forged stronger every time people treat others simply as

181
people, and whenever we endeavour to prevent personal circumstances from
ever constituting an impassable barrier to social inclusion. This heritage will
come into its own when we learn to live according to the principle of solidarity
with others.

182
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SOME WEB REFERENCES FOR INFORMATION ON DISABILITY

International Organizations

(The links are for web-pages which are specifically dedicated to disability on the Website of each
organisation)

United Nations
http://www.un.org/esa/socdev/enable/

International Labour Organization

http://www.ilo.org/public/english/employment/skills/targets/disability/index.htm

World Health Organization

http://www.who.int/icidh/

UNESCO
http://www.unesco.org/education/educprog/sne/index.html

European Union
http://europa.eu.int/comm/employment_social/soc-prot/disable/index_en.htm

Council of Europe
http://www.coe.fr/soc-sp/default_eng.htm

International Non-Governmental Organisations

GLADNET
http://www.gladnet.org/

Rehabilitation International
http://www.rehab-international.org/

Disbled People’s International

http://www.dpi.org/

Workability International
http://www.workability-international.org/

European Disability Forum

http://www.edf-feph.org/

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Handicap International
http://www.handicap-international.org/

CIRRIE – Center for International Rehabilitation Research Information and Exchange

http://cirrie.buffalo.edu/

Inter-American Institute on Disability

http://iidisability.org/

National Organizations in spanish speaking countries

IMSERSO – Instituto de Migraciones y Servicios Sociales (Spain)

http://www.seg-social.es/imserso/

CERMI - Comité Español de Representantes de Minusválidos (Spain)

http://www.cermi.es/

Real Patronato sobre Discapacidad (Spain)

http://www.rpd.es

Fundación ONCE para la cooperación e integración social de personas con minusvalías (Spain)
http://www.fundaciononce.es/

FONADIS - Fondo Nacional de la Discapacidad (Chile)

http://www.fonadis.cl/

Comisión Nacional Asesora para la Integración de las Personas con Discapacidad (Argentina)
http://www.cndisc.gov.ar/

Fundación Braille (Uruguay)

http://fbraille.com.uy/

Oficina de Representación para la Promoción e Integración Social para Personas con

Discapacidad (Mexico)
http://discapacidad.presidencia.gob.mx/index.html

Internet Resources on Disability, in Spanish

DISCAPNET – Web on disability promoved by ONCE Foundation

http://www.discapnet.es/

Solidaridad Digital – e-journal on disability promoved by ONCE Foundation

http://solidaridaddigital.discapnet.es

SID – Disability Information Service

http://sid.usal.es/

Internet Resources on Disability, in English

Institute on Independent Living

http://www.independentliving.org/

Disability Rights Advocates

http://www.dralegal.org/

Women with disabilities

http://www.4woman.org/wwd/index.htm

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Inclusion Europe
http://www.inclusion-europe.org/

WorldEnable
http://www.worldenable.net/

Official website of the European year of People with Disabilities

http://www.eypd2003.org/

Yureable.com
http://www.youreable.com/

disABILITY Information and Resources

http://www.makoa.org/

DISABILITY.DK (Information on disability in developing countries to support NGOs, governments

and others working in the field)
http://www.disability.dk/

Action on Disability and Development website

http://www.add.org.uk/

Asian and Pacific Decade of Disabled Persons, 1993-2002

http://www.unescap.org/decade/index.htm

EDF / FUNKWEB, Universal access website project

http://www.accessibility.lexir.net/

International Disability and Development Consortium

http://www.iddc.org.uk/

World Institute on Disability

http://www.wid.org/

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