History will surely record last year as one marking a dramatic shift in the treatment prospects for many people with HIV.
Sadly, 1997 might end up being remembered as the year when public perception of, and sympathy for, people with AIDS underwent a similarly dramatic shift.
Blame, bitterness, resentment and demonization have exploded recently in private conversations, in the media, on-line and in the subtle nuance of relations between HIV positive and HIV negative communities.
Some trends have been growing for years, like how newly infected people today face more “blame” than those who acquired the virus before safer-sex became household knowledge. There are even whispers about a two-tier structure of medical service provision: One for the “old” infections and another, less comprehensive and compassionate, for the “new” infections.
Other developments, like the demonization of HIV positive men who have dared to speak of “bareback” (i.e., condomless) sex, are even more volatile. There is a pent-up desire to discuss this phenomenon, but those who have prompted the discussion have been barraged with criticism simply for raising the subject. Especially if they admit to having had unprotected sex themselves—or worse yet, having enjoyed it.
It would be more useful to put our effort into talking about and finding answers to the most serious unresolved questions: How much does an undetectable viral load reduce the risk of infection? How much risk is there in oral sex? In unsafe sex between two positive persons? Between two partners with the same strain of HIV? Or two partners who both have undetectable viral levels?
But it isn’t just new seroconversions and bareback sex discussions that are changing how our culture views those with HIV. And it isn’t just gay men under scrutiny.
Pregnant women who refuse antiretroviral treatment are called “murderers.” More groups are being coerced into mandatory testing. And the government, prison officials and, sadly, many AIDS activists, seem to have complacently accepted an inferior, if not genocidal, standard of care for incarcerated persons.
Major legislative initiatives this year focus on controlling “us”—people who are positive—by forcing the reporting of HIV positive persons to the government, arbitrary and racist allocation of precious treatment resources, elimination of anonymous testing, forced contact tracing and other counterproductive measures.
People with AIDS on disability are also under assault—by insurers, sometimes the government and often their friends—to return to work “get off the dole” and similar exhortations that imply those who don’t are, deep-down, lazy.
Yet most people with HIV for whom the treatments have provided a dramatic health rebound still face serious side effects and a constantly gnawing uncertainty. But insurers are too often blind to the anxiety, disorientation, irritability, unexpected fast-moving colonic purges, fatigue and other side effects that often disable even those with undetectable viral loads.
Most people on combination therapy begin every single day wondering, “Is this the day my treatment will stop working?” For many, the paperwork and bureaucratic nightmare of getting qualified for disability in the first place is good enough reason to be reluctant to return to work quickly.
Coping with extreme illness or disability is incredibly disheartening. But one silver lining, for some, is the lack of judgment our culture grants the dying. In sickness, I felt more accepted for who I was than at any other time in my life.
I thought it was compassion; others have pointed out to me that the crippled and wounded are infantilized in the eyes of society, becoming less of a person and therefore less of a factor to be dealt with or bothered by or considered in any case.
With the relative return of health, I and others have also returned to a renewed responsibility as well as to the land of judgment, blame, demonization and even greater marginalization. It’s better than the alternative—death—but it does make me wonder why the compassion, understanding and acceptance we grant the dying can’t be part of all our lives, every day.
The lessons of those who are critical of the sexual practices, parenting and disability choices of people with HIV have too often come with a smug undertone that they know what is best for us. They, in fact, have much to learn from ill people about truth, intimacy, passion and finding the validity of one’s own soul. The demon isn’t desire—it’s ignorance, repression and silence.