Edwin Cameron is one of my heroes. He is a judge at the Supreme Court in South Africa, openly gay and living with HIV. Edwin Cameron is probably the only person openly living with HIV in a high profile public position in Africa (and as far as I know the world).
In his autobiography, ‘Witness to AIDS’, he speaks eloquently about stigma. Here is an excerpt:
“…Why is there such stigma? Stigma often accompanies those diseases that are seen as incurable, deadly, transmissible and disfiguring. But it seems to mark most severely those conditions when the affected person is seen as responsible for getting the disease.
AIDS fits all those categories. As the new drugs become increasingly available, the stigma from incurability will surely wane. […] As more and more people are diagnosed and speak out, the stigma from silence will also wane.
But there remains something even harder to grapple with. The most inaccessible, the most intractable element of stigma is the disfiguring sense of shame that emanates from the internal world of some with HIV or AIDS. This sense colludes with external stigma, overcoming efforts to deal with the disease rationally, keeping those with AIDS or HIV in involuntary self-imposed isolation, casting a pall of contamination and silence over the disease.
What causes this shame? I don’t know. Without special expertise in behaviorism, psychology or the human soul, I can only cast within myself for some inkling of the truth. And my conjecture, neither novel, nor dramatically revealing, is that it is to do with HIV and sex. HIV is a sexually transmitted infection. Perhaps other sexually transmitted infections leave similar feelings. I do not know, since (perhaps ironically) the only one I have ever had is HIV. That has been my fortune, where life’s forces have taken me.
Why does sex leave shame? Perhaps it lies in the embarrassment that arises from exposure of what one thought was utterly private and intimate. Perhaps to admit to having a sexually transmitted infection is to be caught out in an act of sexual intimacy, with all its attendant embarrassment – and shame. Pregnancy, too is a sexually transmitted condition. Women made to wear the scarlet letter in the darker days of sexual oppression might have experienced a comparable sense of shame. But pregnancy is a condition, not an infection. A pregnancy, even one unwanted, even one deemed illicit, holds life and hope and the possibility of growth and fullness. Infection with HIV offers none.
Certainly for me some of the internal shame seemed to come from the fact that my HIV came from a sexual act. In my case it was male to male penetrative sex. When my doctor told me that I had HIV that Friday afternoon in 1986, I was a gay man recently come out. Though always in my practice and social and political life, I expressed myself as resolutely open and proudly gay, perhaps my sense of shame derived from the fact that my virus was homosexually transmitted. Or so I thought.
But this was wrong. As the African epidemic took hold and spread, it became clear that I was not alone. For millions of heterosexuals Africans with AIDS or HIV it is no different. Their shame about HIV is as intense. Even women who say that they married as virgins and remained celibate within their marriages express shame at their condition, and experience the difficulty of speaking out about having HIV.
Perhaps therefore the internal stigma is connected with the merely sexual – not homo- or heterosexual. Perhaps in our deepest selves we feel that a sexually transmitted infection shows other that we have been ‘caught out’. The infection leaves a mark, a stain, a print, linking us back to an act so private, so intimate, so sacrosanct, so emotionally and spiritually unguarded – the moment of sexual coupling – that its external manifestation in an illness, its exposure to the world, is deeply embarrassing and therefore shameful.
Perhaps we still regard ourselves as guilty of some sort of sin of sexual contamination, as marked by moral inferiority, by an uncleanness or exposure of body, and hence a sense of moral inferiority. Some religious moralists inflame all this. They forget that AIDS is a disease. We all do.