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HIV and AIDS: language and the blame game </h2>
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<span class="authors pf-author"><a href="https://www.opendemocracy.net/author/alice-welbourn">Alice Welbourn</a></span> <span class="timestamp"><abbr class="published" title="2015-07-27T09:43:09+01:00">27 July 2015</abbr></span> </div>
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<div><p>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. </p></div> </div>
<p><span class="wysiwyg_imageupload image imgupl_floating_none caption-xlarge"><img src="https://dy1m18dp41gup.cloudfront.net/cdn/farfuture/lQAKXy53VJgTKNlZS1UVSTpsRYl1BZBLgQfykDgU4gQ/mtime:1437921837/files/imagecache/article_xlarge/wysiwyg_imageupload/521587/VolunteersVancouver.jpg_large.jpg" alt="A group of about 50 people posed for a photo wearing matching t-shirts" title="" class="imagecache wysiwyg_imageupload caption-xlarge imagecache imagecache-article_xlarge" style="" width="460"> <span class="image_meta"><span class="image_title">Volunteers at the International AIDS Conference, Vancouver, 2015. Photo: ICW Global, all rights reserved.</span></span></span>While attending
the International AIDS Society Pathogenesis <a href="http://ias2015.org/Default.aspx?pageId=723">Conference</a> in Vancouver last
week I posted on my facebook page:</p><p>"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..." </p>
<p> One of many kind responses
came from Martha <a href="https://opendemocracy.net/5050/martha-tholanah/hiv-disclosure-changing-ourselves-changing-others">Tholanah</a>: </p>
<p>"Mindfulness in use of
language is important. Am I "lost to follow-up" or have I been "bullied out of care"?
#ComplexitiesInDealingWithHumanBeings." </p>
<p>Global HIV policy is full of dehumanizing, aggressive, militaristic and <a href="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">combative</a> phrases which are deeply depressive,
not soothing for the soul. For instance, we people with HIV are often just
called “<a href="http://www.who.int/hiv/topics/comorbidities/about/en/">PLHIV</a>”
or “<a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4270359/">WLHIV</a>”
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 “<a href="https://www.opendemocracy.net/5050/alice-welbourn-louise-binder/compulsion-versus-compassion-hiv-treatment-for-women-and-children">Option</a>”
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. </p>
<p>Some UN documents, such as
the 2013 WHO HIV treatment <a href="http://apps.who.int/iris/bitstream/10665/85327/1/WHO_HIV_2013.9_eng.pdf?ua=1">Guidelines</a>, seek for us to “<a href="http://apps.who.int/iris/bitstream/10665/85327/1/WHO_HIV_2013.9_eng.pdf?ua=1">achieve</a>
viral suppression”
and if we don’t, health staff – even
some male activists with HIV - brand us as “<a href="http://timesmediamw.com/75000-people-defaulting-art/">defaulters</a>”, “failures” “wasting resources” and
worse, with their targets and goals unmet. Susan Sontag wrote of this “blame
the victim” mode long <a href="https://en.wikipedia.org/wiki/Illness_as_Metaphor">ago</a>
and nothing has changed. Even the phrase “lost to <a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3427970/">follow</a>
up” and “<a href="http://www.thebody.com/Forums/AIDS/Resistance/Q173547.html">treatment-naïve patients</a>” 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 “<a href="http://america.aljazeera.com/opinions/2015/3/blame-research-design-for-failed-hiv-study.html">lying</a>”. 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 <a href="http://america.aljazeera.com/opinions/2015/3/blame-research-design-for-failed-hiv-study.html">blame</a>.”</p><p>Other language that
depresses includes the on-going <a href="http://ias2015.org/default.aspx?pageId=833">reference</a>
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. </p>
<p>Last week at the Vancouver <a href="http://ias2015.org/Default.aspx?pageId=723">International AIDS
Conference</a>, one plenary presentation on a cure even talked of the virtues
of “shock and <a href="http://ias2015.org/Default.aspx?pageId=752">kill</a>”
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, <a href="http://www.aidsmap.com/Shock-and-kill-approach-awakens-latent-HIV-in-test-tube/page/1434634/">militaristic</a> language when we could talk about
“reduction” or management” of the reservoir instead? </p>
<p>In response to our frustration
over negative language, including that of the “Global
Plan Towards The <a href="http://www.who.int/reproductivehealth/publications/linkages/hiv_pregnancies_2012/en/">Elimination</a> 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 <a href="http://www.jiasociety.org/index.php/jias/article/view/17990/722?search=Dilmitis">Society</a>, 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. </p>
<p>The Global Plan above has as its four
strategies four “prongs”. As I explained in a <a href="http://rhrealitycheck.org/article/2013/06/09/the-pillars-and-possibilities-of-a-global-plan-to-address-hiv-in-women-and-their-children/">speech</a>
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 <a href="https://opendemocracy.net/5050/nell-osborne/against-coerced-sterilisation-resounding-victory-in-namibia">country</a> level. <span> </span>In that speech I offered
alternative language also. </p>
<p>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 <a href="http://salamandertrust.net/index.php/Projects/Dakar_Workshop_Sep_2013/">Dakar</a> 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. </p>
<p>Language, as <a href="http://georgelakoff.com/">Lakoff</a> 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. </p>
<p>Militaristic, combative language is
widely used in relation to cancer too – “<a href="http://scienceblog.cancerresearchuk.org/2014/12/25/the-enemy-within-50-years-of-fighting-cancer/">beating</a>” 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 <a href="https://en.wikipedia.org/wiki/Silent_Spring">chemicals</a> 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 <a href="http://steingraber.com/bio/">caution</a> and in very small quantity. Bugs were here before
us and will outlive us. To imagine otherwise is folly indeed. </p>
<p>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’. </p>
<p>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 <a href="http://atulgawande.com/">Gawande</a> and Deepak <a href="https://www.deepakchopra.com/news/article/978">Chopra</a> 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. </p>
<p>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. </p>
<p>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. </p>
<p>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. <br></p><p><a href="https://www.opendemocracy.net/alice-welbourn/hiv-and-aids-language-and-blame-game">https://www.opendemocracy.net/alice-welbourn/hiv-and-aids-language-and-blame-game</a><br></p><br clear="all"><br>-- <br><div class="gmail_signature">**************************************<br>N.b.: Listing on the lgpolicy-list is merely intended as a service to its members<br>and implies neither approval, confirmation nor agreement by the owner or sponsor of the list as to the veracity of a message's contents. Members who disagree with a message are encouraged to post a rebuttal, and to write directly to the original sender of any offensive message. A copy of this may be forwarded to this list as well. (H. Schiffman, Moderator)<br><br>For more information about the lgpolicy-list, go to <a href="https://groups.sas.upenn.edu/mailman/" target="_blank">https://groups.sas.upenn.edu/mailman/</a><br>listinfo/lgpolicy-list<br>*******************************************</div>
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