Before William Way, there was the Penguin Place, Philadelphia’s LGBT Community Center. The center took on a number of projects for the community, but probably the most enduring was the Philadelphia AIDS Walk. In 1987, a group of volunteers from the center decided to organize a walk-a-thon to support area AIDS agencies and to raise public awareness about the disease. Since that first walk the event has grown to be a major event on our city’s calendar and has raised almost $16.7 million for HIV/AIDS public awareness, prevention, and care services for people living with HIV disease as part of the AIDS Fund’s mission.
This year, the Walk is vitally important, as the COVID-19 pandemic has made it extremely difficult for many of the 30,000 people in the Philadelphia region living with HIV/AIDS. The AIDS Walk raises money for more services than I have room to list: buddy programs, health information, testing & prevention, medical care, and a whole lot more. Your support this year will also go to provide small grants to help those most vulnerable. A little help with utility bills, food, health insurance or rent, goes a long way. This week’s portrait, Jay Johnson, has come a long way with 3 decades of participating in the annual event. Johnson was at the first walk 33 years ago and has only missed a handful since that date. Johnson is the Director of Volunteers at ActionWellness, another one of the city’s nonprofits working to make a difference for people with chronic diseases.
Tell me a little about yourself.
I was born and raised in Philadelphia. I grew up in West Oak Lane and I currently live in West Philly. I’ve been here for 30 years. I live here with my partner of 15 years, Ronaldo, and our four furry children.
I sneaked a peek at your FB page and saw that cats were a running theme.
Yes, all our cats are rescues. I never dreamed I’d have four, but two of them were brothers and we didn’t have the heart to separate them. The last one showed up at a block party and jumped into my friend’s lap. He took it home but the next morning he realized, “I can’t have a cat!” so we inherited that cat as well.
Did you have pets as a kid?
Yes, I was raised with dogs. Cats are a newer thing. My mother was terrified of cats, so when I moved into my first apartment, my aunt gave me a kitten as a housewarming gift because she said it would help keep my mother away so I could be truly independent!
[Laughing] That’s a fun aunt. What did the folks do?
My mother was a homemaker, but she would take kids in as a sort of daycare for a while. She’s deceased. My father was a social worker for the US government, and he just turned 86!
Is that where you get your activist and altruist nature?
I’d say yes, though my grandmother was a nurse, which was my first career. I did that for 35 years until I was laid off and decided to try a new avenue by coming to ActionWellness. I just celebrated my 10th anniversary working for them this month, and I was a volunteer for 10 years before that.
What inspired you to get involved as a volunteer?
Back when HIV first hit Philadelphia, there were so many people dying, including friends of mine, and they were dying alone. As a healthcare provider working in a hospital, I saw people who were dying of what was called “The Gay Disease” were not being taken care of because the healthcare workers were afraid of it. The oath that they took to care for all just went out the window. There were only a handful of us who would actually take care of people with HIV/AIDS. I wanted to do more, so I also joined our buddy program.
You hear the horror stories from back then. What’s the most egregious thing that you remember?
People being brought in and put in a bed and no one attending to them. Food trays left outside their doors because no one wanted to take the food in. A total lack of care or concern. It was really bad; I lost respect for a lot of my colleagues. They took an oath to take care of sick people and to do no harm and they just decided to ignore it and refused to help people. The fact that they got away with it was really upsetting. There were no consequences for them not doing their jobs.
And now we’re in the middle of another pandemic, but there’s a whole different mentality, no stigma and in fact, though it’s much easier to spread, you have the knuckleheads who don’t seem to care enough to wear a mask when they used to practically wear a hazmat suit just to talk to someone with AIDS.
So nursing, bravo, I can’t even watch an episode of Grey’s Anatomy because I’m too squeamish.
Yeah, you have to have a special calling for it. I’ve done all sorts of nursing, from Med Surg, to the O.R., I’ve worked in the E.R., and cardiac care, but my longest stint was in oncology.
What’s your craziest nursing story?
Oh, so many! Um, one of the most memorable ones was on a Sunday afternoon, I got a call from the labor and delivery nurse saying that they had a pregnant prisoner in the maternity ward…and that she had escaped!
[Laughing] Yes! The staff needed a urine sample so the prison guards took her to the bathroom and stood outside. They were supposed to check any area where a prisoner would be left alone, but they figured, “It’s a bathroom, you go in, you come out.” But they didn’t realize that there was a second entrance. She’s said she was going to run the water to encourage herself to go, but after the water had been on for a while, they finally peeked in on her and she was long gone. It was total chaos. Witnesses said they saw a very pregnant woman running down the street in a hospital gown! The guards begged me not to contact the police, but I had to. As soon as I called 911, you would have thought we declared WWIII. There were swarms of police everywhere, helicopters, they shut down the area around the hospital, it was crazy.
That is crazy. Changing gears, as we mentioned back in the day, there was a big stigma with having the disease. It’s gotten a little better. What was it like for you back then?
I was diagnosed with HIV in 1991. I made the decision to get tested after my best friend died. His partner and I were the only ones who took care of him in the 6 months before he died, and we were with him at the end. His family just could not handle it, and though they did support him financially, we were the ones who were physically there for him. A lot of friends disappeared, so it was just us. I’d been his partner at one time and I’d been with other people who later died of AIDS, so I needed to know my status. If I was positive, I wanted to prepare myself and my family, because back then, a positive result was almost always a death sentence. I remember the day I went to get my results, the counselor told me they were positive and I said, “Okay, thank you” and left. It was Labor Day weekend and a friend of mine was coming to town and we were going to Rehoboth. He was the first person I told and I didn’t know how he was going to react, but he said, “Girl, you’re too bitchy to die!” and that was that.
And here you are all these years later, still bitchy?
[Laughing] That part was slander! I’m never bitchy.
Still, it must have been scary.
Yes, I immediately contacted my best friend’s infectious disease doctor and my primary care provider who was my colleague at the hospital. In those days you did NOT want your employer to know your status, but my PCP was wonderful. We kept it under wraps.
But I understand that at the time you were part of an ad campaign for HIV/AIDS testing.
Yes, but that was an ad for people to get tested and it didn’t identify me as someone with HIV/AIDS. I was just a hired actor as far as people knew.
But then you did go public…
Yes. 10 years ago I volunteered to participate in a study based on the Berlin Patient who was the first person to be cured from HIV. This study involved taking my white blood cells, genetically altering the cells and re-infusing them back in. I initially had a very bad reaction when they first transfused the cells back in. I was for the first time on the opposite side of things in the hospital, watching them bring the crash cart in and everything. It was very scary but it was a good thing, the reaction meant my body was responding. Though it was not effective for what they were trying to do, it will have implications well beyond treating HIV. The study just ended for me, they followed me for 10 years and it made international news. That was my second coming out. The story went worldwide and people who I’ve known for years learned for the first time about my status. The response that I got was phenomenal, all positive!
So you’ve been participating in the AIDS Walk for ages, how have things changed?
Well, it used to be much bigger. In the beginning days of the walk, there were huge numbers of people who came out. It was a longer walk and there was a lot of activity around it. In recent years the crowds have dwindled and it’s been a smaller event. Some of it is because people are not dying from the disease in great numbers like they used to, which is a good thing, but we still don’t have a cure for it, so we still need the funds and we still need people to participate. And of course, this year it’s virtual, which is the biggest change. I’m excited about the way they’re going to be doing it. People can walk at home, on a treadmill or in their neighborhoods. It’s a 5K walk, and we will be raising awareness about HIV throughout the region. Anyone raising over $50 will get an AIDS Walk Philly 2020 tee shirt. I think it’s going to get more people engaged, I’ve already surpassed my goal for fundraising. It’s a beautiful way to walk for and remember those who have passed and to help those who need it now.
What’s on tap?
Starting at 8 a.m. on October 18 there will be an on-line broadcast with messages from the AIDS Fund, our partner organizations, and special guests. People are encouraged to walk on their own at home or outside, socially distanced, and properly masked. Throughout the broadcast, we’ll be giving out information about the current state of HIV prevention, care, and treatment in our community. Some of the emcees and guest speakers scheduled are Stephania Jimenez of NBC10, Cherri Gregg of KYW NewsRadio, Pierre Robert of WMMR, Reverend Dawn Duppins, and there will probably be other special surprise speakers that day.
What will you be doing?
A good friend of mine, Susan Cohen and I are going to walk together. She’s in her mid 70’s and we’re going to walk from the Grey’s Ferry area to Center City and back.
Bravo! Okay, crazy questions, any tattoos or piercings?
I have a left nipple piercing and a tattoo of a red moon or some people say red sun on the left side of my chest. When I got my nipple pierced, it wasn’t a thing. So much so that I had to use my earrings for nipple jewelry. I remember being on the beach shirtless in AC and everyone oohing and awwing because they’d never seen anything like it.
Song that gets you motivated?
Anything disco. My favorite satellite station is Studio 54.
Burn, baby burn, those were the days! I feel bad for the younger kids these days, we had so much fun dancing the night away. I don’t know what they really do now.
Yes, though you had to be somewhat closeted, we found each other and built a community. It’s nice that everyone can be so open now, but it feels like we lost some of the communal aspects.
Definitely, it was like being part of a secret society, a cool one! What’s the first thing you look at in the morning?
Probably my TV! I wake up and turn the news on to see what’s been happening. I’d fall asleep with it on but my partner isn’t able to sleep with it, so I use a timer to turn it off at night. But then it goes right back on in the morning and stays on!
The last show you binge watched?
Oh, so many, from “The Golden Girls” to “Law and Order: SVU.” There was a Netflix show called “Sex Education” that was good and several Netflix movies, I can’t remember the names though. And all the medical shows and police dramas, “Chicago Med,” “Chicago Fire,” “Chicago PD,” all of them!
What’s a fashion style you wish would make a comeback?
Bell Bottoms, Dashikis and platform shoes!
And finally, complete this sentence – Frankly my dear…
I want you to enjoy life. Because that’s something I try to do every day. I try to enjoy life and embrace it, because tomorrow is never promised to you. I don’t want to have any regrets when my time comes.
If you’d like to support Jay and ActionWellness in their efforts go to www.aidswalkphilly.org/.