Self-advocacy is one of the most important ways in which people with intellectual

disabilities have a voice of their own. The words of Jackie Downer, a self-advocate,
encapsulate all that self-advocacy has the potential to be. Her words emphasise that
having a voice of your own is immensely personal and therefore is important to different
people for different reasons. Through her words, the importance of people with
intellectual disabilities having a voice of their own, is emphasised.

In explaining self-advocacy, Jackie says, "Broken down it means 'speaking for yourself',
'communicating in other ways', but it's personal. For me it means that I can speak for
myself. It means I've got a voice and even without a voice I can communicate in other
ways. It means yes and no- most important- 'No, I don't want tea, I want coffee, I don't
want sugar'- all the things we take for granted. It means people must listen to me, I can
take a risk, I can have a relationship, that can be hard. I can think for myself, I can go
to the shop with support and if I need help, people can help me…." (Jackie Downer in
Goodley 2000:81).

'Speaking for yourself'

Self-advocacy, or having a voice of your own, is fundamental to both asserting yourself

and exploring yourself. This is important because it is directly linked to building
confidence and self-esteem. It is important to have the possibility of talking about your
life and your experiences so that who you are can be validated by others. In this way
having a voice of your own has the power to construct your identity.

'I've got a voice and even without a voice I can communicate in other ways'

It is important to emphasize that having a voice of your own does not necessarily mean
having a literal voice. People who are non-verbal are able to communicate themselves,
their likes and dislikes, their wants and needs, in ways other than words. For example,
taking a person by the hand to show them where they want to go, pointing to pictures,
symbols or photographs. This is important because self-advocacy is sometimes criticized
for only being relevant to people who have mild to moderate intellectual disabilities. It is
necessary to acknowledge that all people, even those with severe intellectual disabilities,
can communicate and express themselves.

'It means Yes and No'

Having a voice is important as a means by which you can communicate to others who
you are, what you like, what you don't like, etc. It is important because it means you
can make choices about your life and about what is important to you. As Jackie's words
express, it can be about seemingly small things, like whether you take sugar in your tea,
or about bigger things, like where you want to live. If you have your own voice then
other people are less able to make assumptions about you and your life. This is
especially important for people with intellectual disabilities who have traditionally been
seen as incapable, as not having their own opinions, desires and wishes, and as being

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dependent on those who look after them. In this way having a voice of your own gives
you power.

'People must listen to me'

Self-advocacy is important because people can speak out publicly. If people have a voice
of their own they can comment on the services they use, can define how they want to be
known- as people with intellectual disabilities rather than 'handicapped', can campaign
for issues which are important to them, for example the closure of institutions or how
money is spent in day services, can advise on the creation of new policies and services,
etc.

'I can take a risk, I can have a relationship'

Self-advocacy is partly about knowing your rights as a human being. This is vitally
important in a society which still discriminates against people, who have the label of
intellectual disability, owning their own home, falling in love, getting married, having
children and working in ordinary workplaces. If you have a voice of your own you can
assert the right to take a risk, to choose again and to learn from your mistakes.

'I can think for myself'

One of the most important consequences of having a voice of your own is that it has the
power to challenge how people with intellectual disabilities are thought about in society.
They have traditionally been seen as a group who were incapable of thought, of action,
of being able to live their lives as others do. This has led to their discrimination,
segregation and isolation. If this perception is challenged, then people with intellectual
disabilities will be nearer to being included and treated as equals in our society.

'I can go to the shop with support and if I need help, people can help me'

Finally, having a voice of your own is important because people with intellectual
disabilities have traditionally been dependant on carers, professionals, and parents, for
knowing what was best for them. If people have a voice of their own then the power
relationship is significantly altered. It does not deny that people with intellectual
disabilities need help and support, but emphasizes that they can define what kind of help
they need, when they need it and for how long. It is thus acknowledged that all people
have strengths and weaknesses and that no one individual can be either totally 'capable'
or 'incapable'.

Through Jackie's words it can be seen why it is important for people with intellectual
disabilities to have a voice of their own. Having a voice is important for everyone, but for
people with intellectual disabilities it is crucial due to their segregated, isolated and
discriminated against, position in society.

Many people with intellectual disabilities are listened to, experience little control over their
not lives

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and feel they are not treated with respect.
This is
often the result of under-estimating their
abilities.
Many family members and professionals still
see people
with intellectual disabilities as children and
do not
allow them the freedom to take decisions,
of People with Intellectual Disabilities and
their
Families, supports it in its work.
The European Platform of Self-Advocates is
lead by
a Steering Group of five persons with
intellectual
disabilities. The platform:
helps people with intellectual disabilities to


make decide
mistakes and exercise some control over more by themselves;
their lives. tells other people about the abilities of


Inclusion Europe believes that family people

members and with intellectual disabilities;
professionals have a crucial role to play in supports groups of self-advocates at local


giving and
persons with intellectual disabilities national level;
opportunities to works for more accessible information and


express what they want and to take their own websites.

decisions. This will help them to build their
own To help persons with intellectual disabilities
identity and thus people with intellectual to
disabilities become self-advocates, you should:
can start to live a life of their own. They will
become
less dependent on parents, brothers, sisters,
1. Ask them about their
or opinions
professionals. Persons with intellectual disabilities can have
Inclusion Europe also believes that most a different
people with opinion than you would expect. Often, people
intellectual disabilities have the ability to have
participate ideas about what is best for another person
and make a contribution to society. It is in that
everyone's this person does not share. Therefore you
interest to develop their abilities in order not should
to miss always ask the persons first what they want.
their positive contributions to the diversity of
our 2. Learn to listen to people
societies.
Among people with intellectual disabilities
with intellectual disabilities
and their In the course of their lives many people with
supporters, these efforts to speak up for intellectual disabilities have learned that their
oneself are opinions did not count. Therefore, they are
called “self-advocacy”. often
careful in expressing themselves. They may
also not
Self-advocacy groups of persons with
have a clear idea about what they want or
intellectual
find it
disabilities exist today in almost all countries
difficult to express it. Therefore, learning to
in
listen
Europe. The last years have seen the
carefully to what is said and how it is said is
emergence of
most
a new profession of supporters and
crucial for family members and professionals
facilitators who
who
have developed the approaches and skills to
want to support self-advocacy.
assist
the autonomous development of self-
advocates. This 3. Provide appropriate
shows how important the movement of self- information
advocacy and opportunities for
has become in recent years.
Many national or local self-advocacy groups expression
have People with intellectual disabilities often lack
joined the European Platform of Self- appropriate information to take a real
Advocates decision. They
(EPSA). Inclusion Europe, the European may not be able to read or may need a clear
Association personal

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explanation of difficult concepts. The their self-esteem may be low. All activities to
provision of strengthen their self-esteem as equal
information in an appropriate and members of
understandable society are therefore important.
form is often one of the biggest challenges
for 7. Ensure contacts
self-advocacy.
with positive role models
Peers with intellectual disabilities who
4. Do not over-protect already have
It is natural and positive to protect other developed more independence and decision-
people making
from harm or from the negative abilities are the best role models for other
consequences of people
bad decisions. But on the other side, people with intellectual disabilities. It is important to
do not facilitate contacts with such people.
learn if they cannot make mistakes and feel
the
consequences. For family members and 8. Facilitate self-advocacy
professionals groups
it is important to treat people with Self-advocacy groups play an important role
intellectual as places
disabilities with respect and neither over- where people with intellectual disabilities can
protect exchange their views and develop positions
them nor expose them to serious regarding
consequences of issues that affect them as a group. Family
decisions which they could not anticipate. members
and professionals should support the creation
5. Provide the necessary and
work of these groups, but be very careful not
training to
To assert one's self takes time and support. influence the contents of their work. Self-
Training advocacy
may be necessary to help people to develop groups are the most effective way in which
this skill. people
Training in different skills and in inclusive with intellectual disabilities can influence
settings is policy.
crucial for the development of a person They should exist in each service and at
throughout local, regional
their lives. and national level.

6. Help to develop self-esteem

People with intellectual disabilities have often
experienced many years of disrespect. As a
consequence,

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Advocacy is speaking up for, or acting on behalf of, yourself or another person. The
other person is often receiving a service from a statutory or voluntary organisation and is
referred to throughout this handbook as the service user.
Advocacy can help service users to:
make clear their own views and wishes;
express and present their views effectively and faithfully;
obtaining independent advice and accurate information;
negotiate and resolve of conflict.
Some people aren’t clear about of their rights as citizens, or have difficulty in
fully understanding these rights. Others may find it hard to speak up for
themselves. Advocacy can enable people to take more responsibility and
control for the decisions which affect their lives.

1. What the person says and wants is the most important thing.
2. Advocacy enables individuals to do more for themselves and lessens their
dependency on other people.
3. Advocacy should help people to make informed choices. An advocate must ensure
the service user is making real choices based on good quality information.
4. Advocates should not have a conflict of interest. So that they can speak up for
someone effectively, there must be no other pressures on the advocate. This is why the
advocate needs to be independent of the service provider.
5. People must have choice about the type of advocacy they use. Service
users should be able to choose the type of advocacy that suits them best
(see Chapter 4 on Advocacy Models). Some service users feel that they need
one person who is willing to act on their behalf whereas others will prefer the
support of a group.

Others will want to advocate for themselves, as far as is possible, with only
the minimum of support. The choice of advocacy model will vary according to
the person's needs.

CODE OF PRACTICE FOR ADVOCATES

1. An independent advocate will not be a member of staff of the organisation providing
the service to the service user.
2. The role of the advocate is to represent the views and wishes of the service user
accurately and effectively.
3. Before agreeing to act as an advocate, an advocate will always check that the role of
advocacy is fully understood and this is what the service user really wants. This may
involve setting out expectations from both sides
4. An advocacy relationship will last for as long as both parties agree.
5. An advocate will agree in advance with the service user how contact will be made,
how often and in what form it will take.
6. An advocate has a right to raise any issue on behalf of the service user.
7. An advocate does not need to agree with the service user, only to respect their view
and express it accurately.
8. An advocate will not take on someone else's responsibilities but they may encourage
someone to do their job more effectively.
9. An advocate will always respect the service user's right to privacy and confidentiality.
10. If an advocate is unsure about what to do because of a conflict of interest, they
should contact their advocacy group or manager for support and advice. The service
user's interests should not suffer because of pressure placed upon an advocate.
11. Advocates will demonstrate respect for equal opportunities in all that they do.

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12. The advocate's first loyalty is always to the service user they work with.
13. Advocates must demonstrate that they are there to encourage and help the service
user manage their own affairs wherever possible.
14. An advocate must be prepared to undertake appropriate training and accept
guidance.
Advocacy Organisations should have available copies of their Code of
Practice for the public.