This year’s Scotiabank AIDS Walk for Life is on Sept. 22. It is 32 years into the uncovering of the epidemic, and things have changed considerably and not changed at all.
I was diagnosed with HIV in 1995. I was probably infected in 1984, during the earlier days of AIDS when we had little information about safer sex or transmission of the virus. Those were the dark days of the AIDS pandemic — gay men getting sick and dying. There were jokes back then: “What does GAY stand for? Got AIDS Yet?”
People with AIDS often committed suicide rather than deal with the pneumonias and cancers that ravaged and disfigured their bodies.
In Victoria, in one year, I knew of five people who had died. Five people in one year for a young man in his 20s is unbearable, and to this day I can become overwhelmed with grief that lies hidden inside me until some small thing lets it out.
I’ve said that I stopped counting at 10, but I never stop counting.
In the 1980s and early 1990s, AIDS was unsuitably treated with highly toxic levels of AZT, but it was the only option back then. Little did people know that the drugs that were intended to help them were hastening their demise. By the mid-1990s, treatments were much better and with the introduction of protease inhibitors and new classes of treatment, people who were on the brink of death were revived and their lives became more vibrant.
But the dead remained dead. There was no resurrection for them, no magic pill to make it all better. They are memories now, and their faces and laughter all grow dimmer as the years progress.
HIV is not like any other disease. Although it’s become more manageable, there is no cure, only treatment. Some of the treatments can in turn cause other physical ailments: diabetes, fatty liver, heart conditions, facial deformities and overwhelming fatigue, to name a few. But the most sinister aspect of HIV is not the virus, but the way society views those of us living with it.
Unlike other illnesses, HIV carries with it a level of stigma and fear that is not associated with other diseases. Women with breast cancer are not shunned by the general population, but are embraced as heroes and survivors. People living with HIV are more like modern lepers — people would like to see us either dead or locked away somewhere to “protect” the uninfected.
To many, we are the “untouchables” — dirty and loathsome. HIV is no longer seen as the warm and fuzzy image of gay men dying in hospital rooms while Princess Diana holds their hands; it’s seen as a bunch of “junkies” shooting up in back alleys and littering the streets with used needles.
In truth, HIV is both and neither. While the treatments have improved and the dark days are over, the level of ignorance about HIV persists and people still die from the disease. HIV is about all the things we hate to discuss in Western society: sex, drugs and death. One in five people infected with HIV today are unaware of their status.
Forty-four per cent of new infections are still found in gay, bisexual and other men who have sex with men. More young men are becoming infected. More First Nations people are becoming infected. More women are becoming infected.
And the people who are living with HIV are seen as the vectors of disease. The Times Colonist series on HIV was fabulous reporting, but the comments of readers were more telling: The vitriol and hate in many online comments unmasked the prejudice that exists in our “enlightened” community. This hatred is one reason why so many people living with HIV remain firmly in their closets. The message is clear to us: We are not welcome here; we do not belong.
And so we walk. We walk to remember the dark days when so many vibrant people were lost. We walk to celebrate those living with HIV who currently contribute to our community. We walk because we must walk.
Most often the media pay little attention in a world where HIV is seen as an illness with not much “sexiness” to it; and the AIDS Walk is often overlooked as just one more event against the plethora of so many other worthy causes. But in the end, HIV is about the need to care, to overcome our intolerance and fear and to remember — remember the people who have and continue to bring vibrant colours into our lives.
The teachable moment is not lost on those who have their eyes and minds wide open and their hearts ready to hear.
Michael Yoder is the facilitator of Positively Connected, a social and support group for gay and bisexual men living with HIV, a program of Victoria AIDS Resource and Community Service Society. He has been living with HIV for almost 30 years.
