[lg policy] HIV and AIDS: language and the blame game

Mon Jul 27 15:08:05 UTC 2015

 HIV and AIDS: language and the blame game
 Alice Welbourn <https://www.opendemocracy.net/author/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.

[image: A group of about 50 people posed for a photo wearing matching
t-shirts] Volunteers at the International AIDS Conference, Vancouver, 2015.
Photo: ICW Global, all rights reserved.While attending the International
AIDS Society Pathogenesis Conference
<http://ias2015.org/Default.aspx?pageId=723>  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
suppression", "shock and kill" strategies against HIV reservoirs is
damaging to this soul..."

 One of many kind responses came from Martha Tholanah
<https://opendemocracy.net/5050/martha-tholanah/hiv-disclosure-changing-ourselves-changing-others>:

"Mindfulness in use of language is important. Am I "lost to follow-up" or
have I been "bullied out of care"? #ComplexitiesInDealingWithHumanBeings."

Global HIV policy is full of dehumanizing, aggressive, militaristic and
combative
<http://www.foreign.senate.gov/press/chair/release/kerry-meets-with-sir-elton-john-annie-lennox-unaids-director-michel-sidibe-to_discuss-aids-research-investments-and-policies>
phrases which are deeply depressive, not soothing for the soul. For
instance, we people with HIV are often just called “PLHIV
<http://www.who.int/hiv/topics/comorbidities/about/en/>” or “WLHIV
<http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4270359/>” short for
“people/women living with HIV”. This reduction of an individual to a bunch
of letters feels very dehumanizing and I can’t 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 a word document thesaurus this translates as “impure, contaminated,
perverted, infested….”. That doesn’t feel great. I have written before on
openDemocracy 50.50 of the euphemism of “Option
<https://www.opendemocracy.net/5050/alice-welbourn-louise-binder/compulsion-versus-compassion-hiv-treatment-for-women-and-children>”
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
<http://apps.who.int/iris/bitstream/10665/85327/1/WHO_HIV_2013.9_eng.pdf?ua=1>,
seek for us to “achieve
<http://apps.who.int/iris/bitstream/10665/85327/1/WHO_HIV_2013.9_eng.pdf?ua=1>
viral suppression” and if we don’t, health staff –  even some male
activists with HIV - brand us as “defaulters
<http://timesmediamw.com/75000-people-defaulting-art/>”, “failures”
“wasting resources” and worse, with their targets and goals unmet. Susan
Sontag wrote of this “blame the victim” mode long ago
<https://en.wikipedia.org/wiki/Illness_as_Metaphor> and nothing has
changed. Even the phrase “lost to follow
<http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3427970/> up” and “treatment-naïve
patients <http://www.thebody.com/Forums/AIDS/Resistance/Q173547.html>” also
make us sound somehow – well – naïve, 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
<http://america.aljazeera.com/opinions/2015/3/blame-research-design-for-failed-hiv-study.html>”.
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
<http://america.aljazeera.com/opinions/2015/3/blame-research-design-for-failed-hiv-study.html>
.”

Other language that depresses includes the on-going reference
<http://ias2015.org/default.aspx?pageId=833> 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
<http://ias2015.org/Default.aspx?pageId=723>, one plenary presentation on a
cure even talked of the virtues of “shock and kill
<http://ias2015.org/Default.aspx?pageId=752>” 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
<http://www.aidsmap.com/Shock-and-kill-approach-awakens-latent-HIV-in-test-tube/page/1434634/>
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
<http://www.who.int/reproductivehealth/publications/linkages/hiv_pregnancies_2012/en/>
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
<http://www.jiasociety.org/index.php/jias/article/view/17990/722?search=Dilmitis>,
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
<http://rhrealitycheck.org/article/2013/06/09/the-pillars-and-possibilities-of-a-global-plan-to-address-hiv-in-women-and-their-children/>
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 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
<https://opendemocracy.net/5050/nell-osborne/against-coerced-sterilisation-resounding-victory-in-namibia>
level.  In that speech I offered alternative language also.

Another concept which is curiously negative is the idea of “ending
gender-based violence”, which is closely connected to HIV for women. In a
West African regional workshop in Dakar
<http://salamandertrust.net/index.php/Projects/Dakar_Workshop_Sep_2013/> 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 <http://georgelakoff.com/> and Johnson have explained
at length, frames the way we think about and shape our worlds. If we use
negative, combative, problem-focused, 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
<http://scienceblog.cancerresearchuk.org/2014/12/25/the-enemy-within-50-years-of-fighting-cancer/>”
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 <https://en.wikipedia.org/wiki/Silent_Spring> but with living
alongside them, accepting them as part of nature’s 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
<http://steingraber.com/bio/> 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 <http://atulgawande.com/> and Deepak Chopra
<https://www.deepakchopra.com/news/article/978> 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.

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 don’t - is folly on a grand scale
indeed.

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

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