By Denis Joe
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We were introduced to Nondumiso Hlwele, Bongiwe Mba, and Thobani Ncapai, three members of Bambanani, and the artist Rachel Gadsden. Last year, Gadsden won awards from the International Unlimited London 2012 Cultural Olympiad Commissions to create Unlimited Global Alchemy, and her work with Bambanani is part of that commission. Bambanani was formed in 2002 to participate in the creation of memory books and boxes aimed at helping people come to terms with their HIV diagnosis. The group went on to work on the Longlife Project, which recorded the life stories of women who were participating in a Médecins Sans Frontières (MSF) pilot antiretroviral programme.
Before the discussion began, we were shown a film featuring three members of Bambanani talking about their experiences of coping with HIV. The film also featured Gadsden talking about her work with the group. Nondumiso Hlwele started using body-mapping techniques both as therapy and as a means of getting people to talk about their experience of being HIV positive, and was the inspiration behind Bambanani. She spoke about her work and about her role as a mother, which, she said, was her greatest comfort in life.
In Thobani’s film segment, he spoke about the struggle for affordable anti-viral medication. He went on to talk about the number of people who are unable or unwilling to accept the fact they have the virus, noting that many sufferers, especially men, were ‘in denial’. Bongiwe spoke about her personal struggle to reveal her HIV diagnosis to the members of her church, who came to be her mainstay. Rachel Gadsden spoke about her work, and how she was inspired to ‘speak out’ about the issues surrounding HIV. She said that she empathised with the struggles faced by members of Bambanani, and spoke about her own ‘invisible’ disability.
What was interesting about the Bambanani members who spoke on the film was how much they emphasised a lust for life: Bongiwe spoke about her life with fellow parishioners; Nondumiso spoke about her work as an artist and her joy at seeing her child growing up; Thobani had set up a much needed undertaking business in his town. In fact, the impression that was given by these individuals was that despite their HIV diagnosis, they were getting on with their lives. So, I was somewhat confused as to why the Bambanani members saw themselves as ‘disabled’. And this was the first point that came up in the discussion when Gadsden informed us that Nondumiso wasn’t even aware that she had a disability until she had been informed by the artist.
In fact, this was not a normal disability. This was an ‘Invisible Disability’. It was the very covertness of the condition that created the bond between Gadsden and the Bambanani members that made the venture of Unlimited Global Alchemy so important. It was also noticeable that whereas the Bambanani members talked openly about their HIV, Rachel Gadsden spoke vaguely about her own disability. It was not some sort of voyeuristic curiosity that had me wondering about the British artist’s ‘invisible’ disability, but that Gadsden was making so much about her affinity with the Bambanani group members condition.
I was left wondering about the term ‘disability’ (a term that replaced the more precise term ‘handicapped’) as applied to a group of people who, because of a genetic or medical condition, were disadvantaged in the quality of life that the rest of society enjoyed. Perhaps the most notable thing about the Paralympics was the extent to which prosthetic and medical technology had advanced, to a point where disabled people can have as full a life as other members of society. It is not unthinkable that even sensory deprivation may become more enabling with further technological advancements.
As the Bambanani group’s expressed the need for more anti-retro-viral medication illustrates, a drug regime can help to ‘normalise’ the lives of many who would once have experienced HIV as a death sentence. Yet all these advances are being made at a time when the term ‘disability’ is expanding to include a greater field of conditions—not only medical and mental health issues, but even banal traits such as shyness or addiction. It seems that self-diagnosis is king; that individuals should perceive themselves as disabled is enough for it to be so.
During the post screening discussion, there was much talk about invisible disability, conditions which are not immediately perceptible by the outside world, but are viewed by the sufferer as holding them back from living a fulfilling life. I found myself thinking about the 1950 Henry Koster film Harvey, in which Elwood P. Dowd (played by James Stewart) enters a relationship with an invisible six feet tall rabbit. No one actually believes that the rabbit exists. One of the telling moments in the film occurs towards the end, when Dowd’s sister is taking him to a sanatorium to receive a ‘cure’ that will stop him from seeing Harvey. As Dowd gets out of a taxi, and is entering the sanatorium, the cab driver tells his sister about all the other people he has driven to the sanatorium to receive the same medicine, warning her that Elwood will become ‘just a normal human being. And you know what stinkers they are’. It strikes me that this same contempt of ‘normality’ may well be a factor in the drive to expand our view of what constitutes disability in our own times.
The audience for this discussion was small, maybe because the event took place during a weekday afternoon. What was apparent from the audience contributions was that each member seemed to have been involved in NGO work at one time or another. Many spoke of their work with sick people in Asia and Africa; people whom they once may have characterised as suffering the effects of poverty, they now see as disabled, and this view seemed to be accepted unquestionably.
What also arose during the discussion was a disturbing approach that charities have adopted towards the populations of poorer countries. It seems that neither poverty nor politics (international or domestic) is the driving force behind the hardships that the disadvantaged groups in those countries face; rather it is the attitude of other people that is seen as the problem. It seems that charities no longer work to improve material existence; instead, it is accepted that the role of these organisations is to educate the ignorant masses.
It is understandable that the members of the Bambanani group were frustrated by the attitudes they faced because of their HIV status. And their desire to challenge the discrimination is both laudable and courageous. However, in the mouths of the comfortably well-off Western campaigners, the talk of South Africans as being ‘in denial’ and the need for greater education struck me as no different from the justification that the empire builders of old used to legitimate their colonisation of poorer countries.
It was difficult to ignore the patronising assumptions that many of the speakers made about the people in South Africa and other countries. It is no exaggeration to say that in earlier times, this sort of portrayal of people would have been seen for what it is: racism! Polite, well thought-out, but racism nonetheless.
It seemed that the accounts given by the three Bambanani members, about their work in combatting discrimination, counted for little. Whilst Bongiwe’s account of her struggle to tell her fellow church members about her HIV status may appear insignificant, it was nevertheless an example of how people will combine to help others in their distress. Yet many in the audience seemed more comfortable with the negative view of people (especially dark-skinned people) as ignorant and uncaring. I have to say that I found the accounts given by the Bambanani members to be quite inspirational, and it would be a great injustice if their work, and their obvious belief in their fellow community members, becomes overshadowed by the misanthropic prejudices of ‘enlightened’ Westerners.
But what of the art itself? The Body Maps as part of the ‘the creation of memory books and boxes aimed to help people come to terms with their diagnosis, to disclose their HIV’ are nothing special. Some show a degree of artistic skill but are no better or worse than many of the works produced through the process of art-as-therapy. We see it in works produced in health projects by people with mental health problems or addiction problems: yes the work may well be impressive from a craft perspective, but is it art?
Art as activism (or vice versa) is not really concerned with dialogue or with something that seeks appreciation for itself alone. We are not expected to engage with the works, their sole purpose is to inform. Its audience is restricted to fellow activists and the creators are not seen primarily as artists (either by the audience nor the artists themselves) but are perceived as alcoholics, addicts, HIV sufferers, etc. Our response can really be nothing other than a patronising one; as if we were looking at a painting a child had brought home from school. While a work may be pleasing to look at, I would have to agree with the late Robert Hughes when he wrote: ’..the fact that a work of art is about AIDS or bigotry no more endows it with aesthetic merit than the fact that it’s about mermaids and palm trees” [Culture of Complaint, OUP 1993. P. 186].
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Written under a Creative Commons License, with edits: https://creativecommons.org/licenses/by/1.0/
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