"In my mind, one of the worst things that anyone could have done was to say that AIDS is a manageable disease. In my life it’s never been quite manageable."
Bob Leahy: Thanks for talking with us Sean. Let’s talk first about the photos you posted on Facebook – photos of a man dying. Tell me what you know about them.
Sean McKenna: Well, my neighbour’s husband a year ago was built like a brick shit house, one of those people that would sit by the pool and everyone would stare at. In the fall of 2015 he went in for routine back surgery and ended up with a staph infection and with his body unable to fight it off, it led to his death. I don’t think it’s so uncommon to be honest. Our bodies have spent so long fighting off a disease and then another one comes along and we can’t take it. That’s how I took it.
Did you have any qualms about posting the photos - because they are pretty shocking.
Well, the one picture of his husband lying dead in bed swaddled in clothing reminded me very much of the Benetton ad.
Me too. For those who don’t know about that ad, talk about that for a minute.
It was published in 1990 or so. The poor guy in the photo is very, very gone. There is a father coddling his dying son. I remember that photo having an impact on me. So I saw that my friend had posted the 2016 photos on his Facebook page and I thought “that’s awfully brave” and I asked him if he would let me post them in an anonymous way and in a way that would draw attention to the plight of long term survivors. For three years I have been trying to get services for long term survivors in a city that has more AIDS cases than any other city in the world. The fact is that nobody really knows the long term effect of these drugs.
And you wanted to make the point that people are still dying in 2016. That of course got a lot of people talking and sharing on Facebook. What did you think of the reaction?
I expected it to be huge. My post was shared 227 times and there were a lot of comments. Commenters were shocked that this still happens. And then I have had people tell me to take it down. But his husband wanted it done. It was on his own Facebook page. He posted his entire progression from hulk to dead person on his Facebook page. That combination made me feel comfortable about posting it. People need to see that. People don’t realize that’s happening. That’s what enrages me. People think that PrEP is going to cure AIDS. It’s not.
I think you expressed disappointment that although your post was shared a lot, there were some people missing from the conversation.
I believe there is a hierarchy of entitled white gay men here in New York who have managed to make AIDS their profession who have done well – and those are the people who didn’t share the post. There may be people who think I may be fear mongering but that wasn’t my point at all. If I had made the photos black and white everyone would have assumed they were from 1982. They are identical. But we were willing to look at them, to put them out in public and to help the people who were affected, but now there are a limited number of long term survivors actually dropping off, it doesn’t seem so important to some people as, say, PreP and trans issues – and I don’t see why we can’t share the docket. I don’t see why long term survivors have to take a back seat to everybody else
That kind of leads in to my next point. You posted a link to an article from Beta.org “Can we say goodbye to the word "AIDS"? which suggested we need to re-evaluate the use of the word “AIDS" - that maybe it’s an obsolete term. Of course that one didn’t sit well with you at all. We chatted about it on Facebook.
I don’t entirely disagree with you that there is an impact (on potential service users) when we use the word “AIDS". But I know from my long term survivor friends that they want to keep the term. It’s an Acquired Immune Deficiency Syndrome. It is what it is.
One of the arguments against using the word “AIDS” rather than HIV is that HIV is inclusive of AIDS. AIDS is not inclusive of people who are HIV-positive. And there may be people who want HIV services but are turned off by their being termed “AIDS” services. AIDS is a stigmatized term that comes with a lot of baggage. I think you have to acknowledge that it does have the potential to impact optimal service delivery, say for the newly diagnosed.
I believe it can scare a few people away. But nobody changed the name of cancer, no one wants it but we still use it.
What would you say to AIDS Service Organization then who have “AIDS” as part of their name who are thinking about a name change?
I think it’s disrespectful and disgraceful to change. I think that for the people who died from it and the thousands and thousands and thousands living with it, it’s disrespectful. It just adds to the stigma by saying ”this is so stigmatizing we are hoping to take it away.” Plus it confuses the fuck out of people. And I would argue that “HIV” isn’t any less stigmatized a term anyway.
I’m not sure about that. But I wanted to talk about the “normalization” of AIDS, sometimes referred to as “the end of AIDS exceptionalism”, a trend to make HIV more in line with other chronic manageable conditions like diabetes. Talk to me about that.
In my mind, one of the worst things that anyone could have done was to say that AIDS is a manageable disease. In my life it’s never been quite manageable. I understand that it worries people that AIDS gets more funding than other diseases, but if people knew how much we have learned about other diseases through what we have learned about AIDS and how to respond to it, I think they might think differently. A lot of other diseases have profited from AIDS funding.
And in learning from the community-based response which is I think regarded as a model.
I think we have set a pretty high bar. The community was never so beautiful.
Now I wanted to move on to your work with long term survivors and I know you made the 2016 POZ 100 list for your work with GMHC in trying to reinstate a buddy program for long term survivors after a lapse of many years.
They still have buddies waiting for people who want to have buddies. But I think that is going to change. People are losing their lovers and their support systems and their families. We are in an age where we do end up alone. We are also in an age where there is complete lack of respect for long term survivors. The people who are running AIDS organizations now are so much younger than us and don’t know . . I put pictures up because the pictures speak volumes. I could never say in three years of jabbering what those pictures say. And I see as we get older a second wave of AIDS coming and my long term survivor friends agree with me. There is just nowhere for us to go for help.
What if I were the devil’s advocate and said that yes, this is an aging population, some of them coming into their 60s, 70’s and 80s, and multiple health problems and other life challenges would be expected, with or without AIDS.
I think that shows a disgusting lack of respect again. We are not taking about anybody. We are talking about people who fought off a disease for 25 years, to die of a heart attack because their heart has been through so much already. It’s not a normal heart attack
So you are painting long term survivors as requiring help. But if we shift it around, they also have the ability to contribute, in that they hold the history of the epidemic for example, they have wisdom beyond their years sometimes.
But you can’t share that with anyone who doesn’t want to listen.
But are they just care-receivers?
I believe them to be in need of care. Beyond that I believe they have paid their dues. They have played their role and deserve respect and care now. That’s my platform. I don’t care if they ever want to do another lick of AIDS work in their lives. I think people need to remember that until there is a cure we are all going to end up as long term survivors. We need to take care of each other.
That’s a good note on which to end. Sean. You are an interesting guy to talk to, for sure, even if we don’t see eye to eye on everything, but we disagree respectfully. And I so believe yours is a hugely important voice. Big thanks, Sean, for talking to PositiveLite.com. It’s much appreciated.
About Sean (from HIV Plus) On his Facebook page, in interviews, blog posts, videos, and the 2013 book The AIDS Generation: Stories of Survival and Resilience, Sean McKenna has shared his own story about living with HIV to reiterate that people are still dying of AIDS complications, and more importantly, many are still living with low CD4 counts, high viral loads, and multiple illnesses that characterize what some advocates prefer to call stage three HIV.
Now in his mid-50s, McKenna believes he contracted HIV in 1982, although he wasn’t diagnosed for over a decade, and by the time he got into care the virus had become entrenched in stage three. As someone living with AIDS, McKenna wants to end the ignorance and stigma that still surrounds the diagnosis.
Last year, the activist was named to the Poz 100 list in recognition for helping staffers revive the Buddy Program at New York's GMHC.