Strength in Numbers
In “Positive Networks” (December 2013), a group of HIV-positive advocates discussed the topic of networks and the value they can have in our communities.
I think strengthening and increasing the number of networks of people with HIV—including those that are based on a shared experience, demographic or region—is key to combating stigma, especially the self-stigmatization that each of us with HIV must overcome to effectively manage our health care and improve our quality of life.
Networks provide mutual support, help empower and develop leadership, and enable people with HIV to communicate their concerns and priorities through the leadership they choose, rather than the HIV-positive leadership chosen by others.
New York, New York
I agree that networks are primary engines for combating stigma from within. However, I find that stigma is more effectively combated by directly and credibly dispelling the perception of being a biohazardous threat. When it comes to deadly illnesses, the amygdala cannot be bypassed by semantics or protest—that’s basic populism. Positive networks and TasP (treatment as prevention) publicity are needed to fight HIV stigma.
Harlem, New York
In his blog post “Ken Cole Needs a History Lesson” (December 13, 2013), Sean Strub takes the amfAR board chair to task for saying on the talk show Chelsea Lately that 25 years ago the gay community wasn’t speaking up about AIDS because the stigma was so devastating.
You are leaving out two main players in this story. Dr. Arnold Klein was one of the co-founders of the National AIDS Research Foundation. It was David Geffen who got the heads of both organizations in the room and would not let them leave until the two organizations merged and created amfAR.
There were many egos involved, but David knew that the duplication of efforts with one organization on the East Coast and one organization on the West Coast was wasteful, and he knew that in order to move forward there had to be one unified organization. He single-handedly made this happen—I was there.
Kenneth, honey, 25 years ago I (and the largely gay staff and volunteers of the LA Shanti Foundation) had been speaking up and doing the work for years. Big-name straights, by and large, were a little late to the party.
When I saw this interview, I was so incensed I just about levitated off the bed.
Mark S. King, Atlanta
Does the average PWA [person with AIDS] really care about the inner politics and battles of AIDS Inc.? The rest of us couldn’t care less who runs these groups, who takes credit for what, who pisses off which faction, etc. Wear your ribbons, organize your bike marathons, pay yourself $100,000 salaries, spend half your budget berating people for using the terms clean and dirty etc., but just maybe try to spend some time on actual HIV prevention and finding a cure.
I think the problem might be with Ken’s math, not his history. It was 29 years ago, not 25 years that Kenneth Cole first spoke out. In 1985, for his first major ad campaign, he decided to promote AIDS awareness and research—the first person in the fashion industry to do so.
In my memory of events, 1985 was early for this sort of action. GMHC was founded in 1982. Larry Kramer formed ACT UP in March 1987. The AIDS Quilt was also started in 1987.
With all the great work Cole has done and the money raised and donated, it would be especially sad to skew these facts.
Thank you so much for remembering HIV advocate Michael Callen. I went to high school with him, and we all knew he would do something great in the world. Whenever the movie Philadelphia comes on, I watch so I can hear him sing. He called me, out of the blue, knowing that he was dying. We had a wonderful chat, which I still treasure. He and so many died far too early; yet he did make a large difference in the world.
Dealing with Denial
In the op-ed “The Outcome of Denial and Isolation” (December 2, 2013) a POZ forums member recounts the recent AIDS-related death of his sibling.
Thank you for sharing this story. I believe it will give someone that needed push to deal with their truth. Not from fear but from the love that is evidenced in your telling of losing your brother. For some people, fear (chastisement) only pushes them further into denial. Love succeeds where shaming fails.
This is a tragic story. I’ve had HIV for decades, but I take meds and my virus is undetectable, and from a strictly medical standpoint, HIV is indeed no big deal for me. If the person in this story had taken meds, then the infection might have been no big deal for him too. Denial made it a big deal.
Toby, St. Louis
Heart wrenching. The stigma needs to be put to an end, and it needs to start within the gay community now!
Strength in Numbers