Pausing to pay tribute

Published 01, Dec, 2011

Poz prevention worker Megan DePutter on World AIDS Day: “I feel the urge to pause and reflect and say - to those who have worked for a better future for us all, to those who have died and to those living with HIV - thank you.”

Pausing to pay tribute

This disease will be the end of many of us, but not nearly all, and the dead will be commemorated and will struggle on with the living, and we are not going away. We won’t die secret deaths anymore. The word only spins forward. We will be citizens. The time has come.

— Tony Kushner, Angels in America, Part Two: Perestroika (1992)

I was born in 1981, the year the first case of AIDS (then identified as GRID) was documented. Growing up during the AIDS pandemic meant that I was not immune from the danger, fear and loss associated with the pandemic. But as a mere child, I was also protected from the worst.

This week, ACG screened the documentary film We Were Here. (An excellent review of the movie by John McCullagh can be read on PositiveLite.Com). What is captured in the film, beyond the magnitude of death, suffering and loss from the AIDS epidemic? The incredible will, the selflessness of people who were affected, infected, and dying - and their creative, spirited, unstoppable drive to make change and save lives.

We Were Here reveals just a few of the civil rights attacks on gay men and HIV positive people in the 1980s. There were discussions around quarantine, unethical research practices, the closure of bathhouses, testing without consent, and job loss due to HIV. The civil rights attacks were not limited to the States. In Canada, activists fought the same forms of discrimination, including bathhouse closures, restrictions on blood donation, and attacks against gay men’s sexuality, just to name a few.

AIDS Activism hasn’t just been about life and death, it has also been about protecting people’s human rights – the right to self-determination. Early AIDS Activism changed so much, beyond the scope of the disease; it changed the way health care and support services are provided in America, and in Canada.  When the Denver Principles were written, “people with AIDS” were identified as more than patients – as agents, as people - who needed to be in control of their health care, treatment, sex life, and their destiny. At this point the role of health-care providers was clarified – “to serve people, whether the treatment is AIDS or anything else.”

While reading “AIDS Activist” by Ann Silversides (on Michael Lynch and AIDS Activism in Toronto), I was struck by how fundamental AIDS Activism has been in shifting to a more inclusive, ethical, patient-centred kind of research and treatment. When a federal government created an Ad Hoc Task Force on AIDS, the chairman responded to complaints that the Task Force did not contain members of risk groups by saying that having interest groups involved in scientific, technical discussions would not be appropriate. When Ontario developed an Advisory Committee on medical service needs, the question was again raised if the gay community would be represented. Ontario Health Minister Larry Grossman replied, “We have an advisory committee on cancer and we don’t have cancer victims on it.”

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Enough said. Reading this reminded me of how far we have come towards recognizing people living with HIV as citizens. Through the Denver Principles, the Paris Declaration, the UNAIDS endorsement of GIPA, we have, in conjunction with better treatment and greater awareness of the social determinants of health, helped to align civil and human rights with medical and social service delivery.

The impact is extraordinary.

How different my work would look if I was working here at ACG 15 or 20 years ago.  On ACG’s website, a peer blogger who blogs by the name Church Mouse has been documenting her experience of love and loss and living with HIV in the ‘90s. In one post, “The Soldier Within,” Church Mouse describes disclosing her status to her mother… with her support worker by her side. I can’t help but imagine what a different role the support workers and volunteers at ASOs played then – something I will never experience. Today, in 2011, a great deal of my work in Positive Prevention involves creating workshops and training courses that promote health and wellness among people living with HIV. In a way, most of my work focuses on the top two tiers of Maslow’s hierarchy of needs: esteem and self-actualization.  I am grateful for those who have made room for this to be possible.

There is one more reason for me to be grateful to those have fought in the AIDS war.  Like all of you reading this, my life has been deeply enriched by people in it who are living with HIV. I am grateful for the HIV positive people in my life who make me laugh, inspire me, support me and who have taught me much more than anything I could ever have hoped to learn in graduate school. People living with HIV are my friends, mentors, co-workers; they are my community.  It has occurred to me that without the AIDS activists who struggled in those early years, I would not have the same people in my life today. It is an eerie feeling, and I can only resolve it by expressing gratitude for the energy, commitment and dedication of those whose hard work has allowed my life to be enriched by so many people living with HIV.

The story is not over.  Today we are fighting criminalization, stigma, rising infection rates and the ever-stubborn “isms” and “phobias”. We don’t know what the future holds for those aging with HIV, there is still no cure, no vaccine and meds that are not exactly side-effect free.  We have a lot of work to do. And yet I feel the urge to pause and reflect and say - to those who have worked for a better future for us all, to those who have died and to those living with HIV - thank you.