Scott Kramer, LCSW, is another New Yorker I’m proud to call a dear friend. Five years ago we bonded over stories about HIV, as both he and my father were diagnosed in 1988, at a time when there wasn’t much hope, nor treatment options. Scott and I both share a Boston college experience, he at BU and me at Emerson. He moved to NYC ten years before me, in 1990, and just like me he struggled to find work eventually landing a gig in graphic design, but it was his passion to find his true calling—through an online assessment test—which brought him to a new career as a psychotherapist in private practice in the West Village. Scott has taken his experiences living with HIV and has used that to help empower others as they go through their own personal journey.
Candy Samples: When I first met you, you
were already practicing, and you had invited me to one of your groups to view the documentary about ACT UP, How to Survive a Plague. How did those groups come about?
Scott Kramer: I thought, there’s got to be more ways to engage people, more ways to build community for people. Because what I’ve learned throughout my years in practice is that people are really terrified of meeting people. Seriously afraid of rejection. People living with HIV deal with a lot of rejection all the time. Historically speaking, people, in the early days, would like to serosort—meaning, date someone who is of their same HIV status. And while that was happening, there were other people that were trying to date anyone at all.
There was a lot of stigma. There was a lot of rejection of people who were living with HIV. And so I decided there was a need to build community and reduce that fear and stigma. And out of that came Hi-fIVe Flicks which you came to, the movie group.
You talk about stigma. Do you find that is a focus in your practice—to reduce stigma, reducing that fear?
Absolutely! There’s huge fear from people living with HIV to disclose their status especially on apps to potential romantic partners, simply for fear of rejection. Many people who are newly diagnosed remember when they were negative and remember, perhaps, not being very accepting of people who were positive when they were on the other side of it. And so now they understand what it’s like in terms of being rejected and rejecting others. That stigma is very real but it also prevents people from even trying to meet other people, whether they are positive or not.
We don’t know who is positive. Not everyone is so out about their status. There are a lot of times when people may not even reach out to someone because they think automatically that they will be rejected. They feel badly about themselves. They feel like the words that they don’t like to hear—dirty, unworthy, unlovable. The things that we think of when we’re newly diagnosed: “How am I ever going to love someone again? How is anyone ever going to love me?”
And so through reduction of stigma and fear, maybe those people can take one step closer to reaching out to someone—the person on the other side of the bar, the person whose picture they like on an app or a friend of a friend.
It’s 2019 and the stigma is still there!
I can tell you that when I was on an AIDS charity ride, on the crew, and there was a group called Pos Peds. Pos Peds carry an orange flag that they can attach on their bicycle. I decided as a Pos Ped crew that I would wrap the flag on my belt—and it was visible and I was really proud of that because I wanted to bust stigma to show that other people could bust stigma, too, and they could maybe feel more comfortable. There was someone I was on the crew with and he came up to me and said, “I’m positive also. I’ve been positive for a number of years, but I’m still not out about it. I still don’t want people to know.”
I said, “That’s fine. You do what you have to do. Would you like one of these flags? You can hold on to it, you don’t have to show it.”
At closing ceremonies, he pulled me over and showed me there was just the smallest triangle of orange showing from the flag on his belt. No one could see it, but he knew what he was doing. And that is a stigma buster for himself. He put one foot outside of his comfort zone and that was huge for him.
Do you think the advent of PrEP, PEP, U=U, knowing that we have the science on our side, has the power to reduce stigma?
Absolutely! Because now it can become a non-issue if someone can achieve an undetectable viral load. That’s not possible for everyone, but for those who can, now there is no chance of transmission, ZERO chance of transmission of HIV from someone who has an undetectable viral load to someone who is not living with HIV. Game changer.
So what that means is, with the advent of U=U and PrEP, with those two things, that’s like a double layer of protection—which is even more effective than condoms.
What it does really, is PrEP gives us options. And U=U gives us more options. It’s wonderful because people have choices and they can make their own choices about their own sexual health which hasn’t always been the case. Before it was condoms or no condoms.
I remember getting the C. Everett Koop (US Surgeon General 1982–1989) mailing about HIV/AIDS in the eighties.
You were doing your homework! I missed that whole part. In the mid-nineties, that’s when I was diagnosed with AIDS, in 1995. It was just before the cocktail. I wasn’t getting any medical treatment at the time. That is not a good idea—it’s very important to get tested and know your status. But this was my journey back then, when we only had toxic medications. For about 10 months I took AZT and other lesser known medications that left me with a pretty severe case of peripheral neuropathy, which affects my legs and my walking. It got so bad at one point that I actually had to have a walker and never thought I’d be able to walk again. But then, slowly but surely, six months later it started getting better and better but I still have it somewhat. But I can walk. I’m mobile. I can walk in the AIDS Walk and it’s no problem.
Funny you mention the AIDS Walk. I always describe you as CandyWrappers adjacent. You walk with us but you have your own fabulous team, Invincible–The Pat Benatar Team.
I’ve been doing it since the year 2000. It’s more of a virtual team now, I don’t recruit that many walkers. I just do it to raise awareness and raise money for AIDS Walk and all of the beneficiaries and yes, I do walk with the CandyWrappers every year now, because CandyWrappers are awesome.
I’ve always said that AIDS Walk is a great entry-level into activism. You’re surrounded by so many supportive people that are all there for one cause, one mission.
Absolutely. And I always thought that it’s the amount of people that are there that means so much. It means so much because that’s what you see on TV. But also, it means so much for people living with HIV, to see so many people caring. We don’t see that on the apps. We can be scared to see it in person. We can be scared to disclose to anybody—our bosses, our family, our best friend. But with AIDS Walk we can see twenty thousand people literally surrounding us. We can hug any one of them because they are there really to support people living with HIV. It’s a beautiful thing and that, that is a way to build a community.
It’s a common goal to raise awareness and eliminate stigma. Whether it was the eighties, nineties or early 2000s—it’s still there. With your practice, you are literally taking your practice to the bar here in Astoria. Tell me about that.
The Hi-fIVe group has now evolved into community outreach—Hi-fIVe Talks. What that looks like is I will go to a bar, write on Facebook about where I’ll be and I will sit there and talk to anyone about HIV. I’ll start a conversation so people know I’m there to talk about HIV, and anyone can come up and talk about anything around HIV. Whether they know someone and lost someone to HIV, whether they’re thinking about dating someone living with HIV. Whether they’re thinking about getting tested or going on PrEP. Or they just found out they’re positive or they’ve been living with HIV for a really long time and just want a hug. Any of those things. Whatever it is, you can always talk to me about HIV.
You say outreach, I say ministry.
Candy Samples is a singer/songwriter drag artist in New York City. She has released two EPs and several singles on iTunes and is currently working on her first full-length album. In her spare time, she fundraises and raises awareness for many different HIV/AIDS organizations. She is a fierce ally to the HIV/AIDS community and encourages all to use their “Powers for Good.” For more information, log on to: www.samplemycandy.com.