Friday, February 12, 2016

HIV and AIDS: Language and the Blame Game #HIVE

July 27, 2015
Volunteers at the International AIDS Conference, Vancouver, 2015. (Credit: ICW Global)
Volunteers at the International AIDS Conference, Vancouver, 2015. (Credit: ICW Global)
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.
While attending the International AIDS Society Conference on Pathogenesis, Treatment and Prevention 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:
"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 phrases which are deeply depressive, not soothing for the soul. For instance, 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 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" 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 don't, 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-naive patients" also make us sound somehow -- well -- naive, 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 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 gender-based 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, 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" 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 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 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.
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.
Alice Welbourn is founding director of the Salamander Trust and is on the steering group of the Athena Network. Diagnosed with HIV in 1992, she is a former chair of the International Community of Women living with HIV and developed the Stepping Stones training program on gender, HIV, communication and relationship skills. Alice is a commissiong editor for the openDemocracy 50.50 platform AIDS, Gender and Human Rights.

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