Wednesday 29 June, 2016 13.00 EDT
Chatty CATIE: Who is Your AIDS Icon?
5 PHAs pay tribute to the people who inspire them.
Interviews by RonniLyn Pustil
Louise Binder, 65
Brian Farlinger was a lawyer who worked for the Canadian Bankers Association before he was diagnosed with HIV. He became a leader in the early HIV activist community and was one of the founders of AIDS Action Now!, which did much of the groundbreaking work for treatment access in this country. He passed away in 1995.
There’s no question that Brian had a profound influence on me. He brought a unique integrity to the work he did. He clearly was not doing this work for himself; it was really selfless and he thought about it in terms of what would bring the best result for the most people. Brian came from a well-to-do family and could have done anything with the remaining years of his life; he didn’t have to take on AIDS activism but, at great personal cost, he did.
One thing that will always stand out in my mind: When the first protease inhibitor trials were coming to Canada, the drug companies were not prepared to give any compassionate access to the trial. Brian held out, saying, “you can’t bring these trials to this country unless you help out those who are really sick.” He withstood some criticism at the time for what he did, but ultimately the companies did allow compassionate access and this became the gateway for all the compassionate access programs that all the drug companies then put in place. That saved a lot of lives because protease inhibitors turned out to be so important to our treatment and survival.
Toward the end of his life Brian became blind with CMV and was very fragile, but he still travelled to conferences and speaking engagements, dragging an IV pole around with him. He gave this community everything he had. He sacrificed his own health and survival for the rest of us. And he was egalitarian—he didn’t make distinctions between different groups of people with this disease. It didn’t matter if you were a gay man or a woman or whoever you were, the important thing was your compassion and commitment to this cause.
Underneath Brian’s businesslike demeanor and reserve was a great humanitarian and a selfless, compassionate human being who would go to any lengths to help people in need. My admiration for him is profound.
Gogo Boukar, 46
HIV+ since: 1997
My AIDS icon is a man called Jean Marie. I met him at the AIDS Committee of Ottawa when I was seeking support there. He was a handsome, elegant and alluring man. Jean Marie was proud of who he was and where he came from.
Jean Marie was a black HIV-positive gay man who experienced three-dimensional discrimination. Despite his situation, he never stopped fighting for his rights as a human being—he fought until his last breath. I consider him my icon because he showed me that no matter how much I can contribute, it will make a difference in someone’s life.
Jean Marie told me, “Don’t let my story be forgotten. You are a witness to how I was treated. Please tell the world what happened and that no one deserves to be discriminated against that way.” He said that no one should have to suffer the way he did and that I have to remember that, so his pain wouldn’t be in vain. From that day, I said to myself that Jean Marie’s voice would be heard through mine until my last breath.
Jean Marie’s personality and his experience shape the way I advocate and stand up for people who are voiceless. He made me believe in my strength. If the work that I do won’t ease people’s pain and make their lives a little better, I have to stop and ask myself what I should do to make it right.
I am deeply sorry that I didn’t have enough resources to help Jean Marie. I am sorry that I did not have more courage to fight hard for him. I am sorry that I didn’t scream on the top of Parliament Hill so the decision-makers would listen. I am sorry that he had to endure all of those injustices. I am sorry that nobody cared enough for him because of what he represented. I am sorry that I didn’t have the power to make decisions about health equity for all people, no matter where they come from or what their social status, gender or sexual orientation.
Although Jean Marie is not here today, he is remembered all the time because his legacy is the work that I and so many others are doing today.
Deborah Norris, 55
There is one group of people that stands out in my mind as my icons in the HIV movement: Living Positive’s Edmonton Persons Living with HIV Society. It was my lifeline when I was diagnosed.
I will never forget walking into one of their Monday night support groups in 1992 and being overwhelmed by the joy and fun and compassion in the room. For the first time since being diagnosed, I felt like I was going to be OK. Sure, there were people there who were very sick, and there were limited treatment options—we only had AZT back then. But in spite of the fact that many people—our friends—were dying, we were there for each other. And not willing to give up.
There were activists like Dana King, one of the founders of Living Positive, who died in 1992; Ken Ward, who fights to this day for the care and support of Aboriginal people with HIV; Wayne, Maggie, Jim, Sherry, Chance, Cornie—the list is long—all people who showed me that it is possible to live with this disease and that if I fought for my life, I’d be OK. They taught me to question everything and to stand up for myself. They were, and are, HIV warriors. They fought—and some continue to fight—against the stigma and discrimination that continues to be leveled at people living with HIV.
I am fortunate to have had such strong mentors in my life and I credit them for my being alive today. I carry on their example by continuing to educate people about HIV and reduce stigma by speaking out. Their legacies live on.
Bruno L., 31
HIV+ since : 2002
It may not be very original, but my AIDS icons are Bernard Hirschel and the Swiss Federal AIDS Commission, which took a position in 2008 about the minimal risk of HIV transmission associated with an undetectable viral load.
Before 2008, I was afraid of starting antiretroviral therapy for various reasons: the cost, the fear of forgetting to take my meds, side effects, long-term problems related to travelling. Hirschel’s announcement transformed my relationship not only with the medication (by helping me see it as a positive part of my life) but also with my body. Finally there was room to think of something other than the virus.
If I had the chance to meet him, I would want to thank him. I would say: Thanks to your research, I now have greater control over my life. Mainly, I feel that this knowledge allows me to reverse the power relationship and vulnerability I feel when disclosing to an HIV-negative partner. If I am rejected because of another’s ignorance or fear, I can tell myself that I’m not the one who missed out. On the contrary, my self-knowledge allows me to experience relationships that are ultimately far more satisfying.
Sandy Lambert, 54
My AIDS heroes are the warriors who have gone before us and the warriors on the ground who are now doing the work. The warriors who have left us, who died of AIDS and have gone into the spirit world, are the ones we can’t forget. They are the ones who came before us and they had struggles like we do. When I have meetings, I usually invite them in to give me some guidance.
The warriors on the ground are all across Canada. They are living with HIV and doing very difficult, groundbreaking work—in education, HIV awareness, being the guinea pigs, trying out new drugs, fighting stigma and discrimination. Many of the warriors come from remote communities and are still dealing with that stigma.
All of the warriors have affected me. In the Aboriginal community, we’re family. If I’m in Vancouver and another warrior is in Iqaluit, we still support each other, even if we’re strangers.
I am one of the warriors.