HIV and AIDS: language and the blame game | openDemocracy

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HIV and AIDS: language and the

blame game
ALICE WELBOURN 27 July 2015

The negative and dehumanizing language used by scientists discussing

global HIV policy is sapping the soul of those on the receiving end. The
call for an alternative language of nature and nurture must be heard.

Volunteers at the International AIDS Conference, Vancouver, 2015. Photo: ICW Global, all
rights reserved.

While attending the International AIDS Society Pathogenesis Conference in

Vancouver last week I posted on my facebook page:
"Have retreated from IAS2015 for a breather. Too much negative language
about "loss to follow up", "defaulters", "failure to achieve viral
375suppression",
"shock and kill" strategies against HIV reservoirs is damaging to this soul..."
Share

One of many kind responses came from Martha Tholanah:

https://www.opendemocracy.net/alice-welbourn/hiv-and-aids-language-and-blame-game

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"Mindfulness in use of language is important. Am I "lost to follow-up" or have I

49
been "bullied out of care"? #ComplexitiesInDealingWithHumanBeings."
Tweet

Global HIV policy is full of dehumanizing, aggressive, militaristic and combative

0 For instance,
phrases which are deeply depressive, not soothing for the soul.
we people with HIV are often just called PLHIV or WLHIV short for
people/women living with HIV. This reduction of an individual to a bunch of
letters feels very dehumanizing and I cant think of any other health condition
where the individual is so reduced to an acronym. Similarly we are widely said
to have been infected or to potentially infect others. In a18
word document
thesaurus this translates as impure, contaminated, perverted, infested..
That doesnt feel great. I have written before on openDemocracy 50.50 of the
euphemism of Option B+, a strategy which starts pregnant| women on HIV
treatment for life the day they are diagnosed, which is not an option for them only their governments.
Some UN documents, such as the 2013 WHO HIV treatment Guidelines, seek
for us to achieve viral suppression and if we dont, health staff even some
male activists with HIV - brand us as defaulters, failures wasting resources
and worse, with their targets and goals unmet. Susan Sontag wrote of this
blame the victim mode long ago and nothing has changed. Even the phrase
lost to follow up and treatment-nave patients also make us sound somehow
well nave, careless and thoughtless, as if there might not be key intentional
reasons for our failure to return to a clinic. In a recent trial in South Africa,
where it was discovered that young women participants had not in fact made
use of a tablet and gel that were being trialed when they said they had, they
were deemed by the researchers to have ruined the trial by lying. As
Professor Ida Susser explains: when a study fails, we must be careful not to
imply that the subjects are at fault. My analysis of the study suggests, rather,
that research design was to blame.
Other language that depresses includes the on-going reference to HIV/AIDS
as if they are one and the same. Ever since HIV medication was introduced in
the mid-1990s, HIV has no longer been a death sentence for those of us
privileged enough to access treatment when we need it. Yet this phrase is still
used repeatedly by those who should know better.
Last week at the Vancouver International AIDS Conference, one plenary
presentation on a cure even talked of the virtues of shock and kill tactics of
using an aggressive regime of early treatment to suppress the HIV reservoir
which builds up in our bodies after we first acquire HIV. Why do we have to use
such combative, militaristic language when we could talk about reduction or
management of the reservoir instead?
In response to our frustration over negative language, including that of the
Global Plan Towards The Elimination Of New HIV Infections Among Children
By 2015 And Keeping Their Mothers Alive, known widely just as the
elimination plan, a number of us women living with HIV wrote an article for the
Journal of the International AIDS Society, to explain why we found such
language so debilitating and harmful and to offer alternative, blame-free,
woman-positive, language instead. This has slowly gained traction in some
corners. But it is yet to be adopted by mainstream HIV scientists, for whom
perhaps numbers rather than language are more their comfort zone. Yet, many
of us on the receiving end of such language feel battered and bruised by how it
saps our souls.
The Global Plan above has as its four strategies four prongs. As I explained in
a speech in 2013, prongs remind me of pitch-forks and botched abortions rather
than of a global strategy to care and support for women living with HIV as they
prepare for motherhood. The potential ramifications of the use of such language
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should be considered carefully before its us ein global policies. Whilst published
as global level as voluntary guidelines, it often has dire knock-on effects at the
country level. In that speech I offered alternative language also.
Another concept which is curiously negative is the idea of ending genderbased violence, which is closely connected to HIV for women. In a West
African regional workshop in Dakar in 2013, we asked UN staff, government
staff and NGO staff alike what kind of world they dreamt of beyond the end of
gender-based violence (GBV). Their common or unified response was if we
have a world without gender-based violence, then we will be out of a job I
found that response immensely revealing about the self-limiting nature of using
negative language since they were sub-consciously unable to work towards a
world beyond GBV, firstly because such a positive concept had never even
been considered and secondly because realising such a vision would herald
their redundancies.
Language, as Lakoff and Johnson have explained at length, frames the way we
think about and shape our worlds. If we use negative, combative, problemfocused, competitive militaristic language, we think and act accordingly. By
contrast if we use the language of nature, nurture and growth our thoughts and
actions respond creatively and also turn to positive solutions.
Militaristic, combative language is widely used in relation to cancer too
beating cancer, fighting it and, when someone dies, declaring that s/he has
lost her/his battle with it. But such language, I believe, is both unnecessary
and damaging to our souls. I am a great believer in organic gardening, in finding
balance in my plot and in not zapping weeds or slugs with toxic chemicals but
with living alongside them, accepting them as part of natures rich tapestry,
using physical barriers such as gravel, copper strips and old carpet to contain
them instead, so that I can also grow nourishing vegetables safely. If I were to
use any spray I would only use it with extreme caution and in very small
quantity. Bugs were here before us and will outlive us. To imagine otherwise is
folly indeed.
Similarly, I look at my HIV as a part of me which I accept rather than reject. I
live alongside it and around it in my body, with modest HIV medication, rather
than trying to reject or defeat it. It is not a wholly negative experience. I and
many colleagues thank our HIV for giving us many insights into the purpose of
our lives and into the injustices which it has brought so many others around the
world. I have had many good conversations over the past year with my sister,
who has pancreatic cancer. She points out that when people die in the normal
course of events, we do not say that they have lost the battle' to stay alive, but
accept it as normal. Though challenged by her cancer, my sister is not fighting
it: rather she is doing all she can to support her immune system so that it can
best perform its normal function (cancer has been described as a breakdown of
the immune system - the body is hard wired to heal). Recognising better the
impermanence of life, the quality of her life is actually enhanced - this does not
sound like a battle.
A more gentle, holistic response to the containment of disease is needed rather
than the aggressively-charged metaphors which bombard us all. The one
certainty that joins us all as living human beings is our impermanence - that we
will die. Atul Gawande and Deepak Chopra have eloquently argued how our
attempts to assume otherwise are hubristic and there is often more sense in our
seeking to heal rather than to cure ourselves, to find balance in ourselves as
our bodies deal with our ailments.
The language of nature, nurture, roots, shoots, branches, warmth, rain, growth
and creation is something that makes me feel good about myself and others
around me. In my garden I need a toolshed, not an arsenal.
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With our tools, we can join together to create a better world for us all, with
greater equity of income, of social, gender and environmental justice, greater
involvement in political decision-making in all policies that affect our lives. What
will help us along the way is a sense that we have scientists, donors and policy
makers working with us, not against us, seeking a shared vision rather than
chasing their targets, offering us respect, dignity and appreciation of the trials
we face along the way in initiating and continuing with our self-care. We all
need to work together in this garden and we need to respect the workings of the
slugs, bugs and weeds also in our lives.
The forces of nature are bigger than us all and to assume we can overcome
them and to blame people with HIV if we dont - is folly on a grand scale
indeed.
Read more articles on the long running 50.50 platform AIDS, Gender and
Human Rights

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