A Lone Activist Survives an Urban Shelter System

—As told to Suzy Subways

May / June 2008 • Issue 8

An HIV positive homeless activist talks about life inside city shelters, being kicked out of one for his activism, and delaying HIV treatment because he’s homeless.

The shelters are like warehouses for men. Guys who go to work have to fill out a “late return.” And you can fill out the paperwork, but if the person on duty doesn’t put it in the proper place, you lose your bed. While I was living in another shelter, I finished an HIV treatment education class at a local AIDS service organization and completed a building maintenance class, but it was very hard for me – that and keeping my doctor’s appointments, because I’m HIV positive.

The people who work at the shelters put everybody in a classification that comes from Narcotics Anonymous – that you can’t manage your life so somebody has to do it for you. “You’re here, so you must have a problem. We’re gonna strip you down and build you back up, and we’re gonna make you the man that you couldn’t be.” They treat you like you’re on drugs, even if the problem is just that you’re having trouble with your wife, and you have a home, if you could just patch things up. People might have mental health problems, you might have HIV, or have had a disaster, like a fire. But I’m 45 years old – you can’t strip me.

I think people who work in this capacity need to listen. I would let people express themselves, and I think I would get a better response. Rather than “Shut up, let me tell you what I want you to do.” They provoke people. A guy could come there and be at his exceeding limit, and they’re not trained to notice anything like that. Something could trigger him, and he goes into a rage. I’ve seen suicides in the shelters.

Getting Kicked Out for Activism

They want to manage your money. You use the shelter’s address, and you can get your welfare benefits. You pay shelter fees, and then you put most of the rest of the money into a savings plan. A few months ago, I needed carfare to go be with my wife, but they said I had to pay those shelter fees or they were going to kick me out. My wife has cancer. I felt that saving money would mean nothing if my wife was to pass away.

I had to involve some higher-ups, so I talked to a gentleman at my city councilperson’s office. After that, it seemed like I was on a blacklist. Two people the next day were badgering me. They come around in the mornings and say, “get out of bed.” I was getting dressed, and the one woman said, “I better not say nothing to him, because he’s going to tell the politicians on me.” I didn’t say anything back.

The day I had a colonoscopy, I went back to the shelter and they had cut my locks, packed up everything and had it in a big tub, and said, “You’re out of here.” A person comes into the shelter with all they own, their worldly possessions. And I said, “Look, I’ve got this note from my doctor, I need to rest,” but they kicked me out. I had to lift my belongings. They said, “We feel that you’d be better suited somewhere else.” The present place I’m at, it’s cold as ice. It’s a gymnasium. This is just for the winter initiative – it’s going to dissolve at the end of the month.

Living with HIV in the Shelters

I’m putting off going on HIV medication because I’m in a shelter. At this point, my CD4 count is getting pretty low. Every month, my doctor says, “You’re going to have to go on it either way, but I think we could hold off.” The problem is, if I started a regimen and wasn’t consistent with taking it, I’d have to start on something else. I was reprimanded for keeping my depression medication in my locker. They hold your medication. One time, I said, “Miss, I really need my medication.” She got on the phone, and it seemed like a personal phone call. Then she says, “Okay, okay, in a minute. I forgot about you, wait ’til I come back.” So I went out the door, because I had to make an appointment. Had I been on HIV meds, I probably would have blown my regimen. See, that would aid in you forgetting to take your medicine at all.

Sometimes my medication has been stolen, and we would suspect by the staff, because they had access to it. Most of the staff are ex-addicts. They forget where they come from and return back to where they were, in their state of mind. I was told that certain meds go for $5 per pill. One time, at another shelter, I came down with scarlet fever and went to the hospital. When I got back, I never got my medication back. It was like the second or third time, and the Medicaid HMO wouldn’t replace it. Had I been on HIV meds, that would have messed me up. It’s not made for a person who has to adhere to taking their meds on the regular.

There’s so much unprofessionalism, it’s a shame. I’m trying to protect my anonymity, because nothing’s confidential in the shelter. People sometimes are caring, but you’ve got some people that are just plain old mean. If their way to hurt somebody is to let their business out, then they’ll do that. That could crush somebody. These people that work there, they gossip. And you could be sitting right there and overhear what they say about people. When you take your meds, the way it’s supposed to be is that only one person is allowed in the room, so nobody knows what you’re taking, but it’s not like that. People are standing right there. I don’t even think they go by HIPPAA [patient confidentiality] laws.

They didn’t try to gear me to any programs for people living with HIV. As a matter of fact, I took one of the HIV resource books to my case manager, but I just got the feeling that she took it and put it under somewhere. After that, I felt like the other case managers knew my status.

There was a guy – I haven’t seen him – I think he passed, just maybe a few weeks ago. His name was Jerome, and I think the guys looked out for him pretty good. That really hit me close to the heart, because I’m HIV positive, and I would guess that he was at a really bad stage of AIDS. A shelter like that is no place for a person like that. He was so frail you had to help him get dressed. I dream about the magnitude of this thing, and it gets me really choked up that people have to suffer like that.

Solidarity and Organizing Among Homeless People

People get homeless, and at that time, the barriers drop and we come together and help each other. It’s amazing. You really need a belt, and a guy takes the belt off his waist if you’ve got an interview or something. It’s not the shelter giving you clothes – it’s other guys giving you clothes. It feels good when guys in the shelter say, “How’s your wife doing? Is she getting around alright?” These are guys that, if you looked at them, you’d never think they had it in them like that – big, tough guys. You’re all depressed, but you’re sitting in there, and you find something to laugh about. I guess that’s what lets you know you’re still alive.

Most of the shelters, they’re going to be making them leave soon, because they’re in a family section and nobody wants to see homeless people. This is the next thing that’s coming up. They’re refurbishing an old hotel to make condominiums around the corner from one of them, so that shelter’s not going to be there in a couple of years.

During the mayoral election, I went out with a local advocacy group and got people to vote. We had a homeless rally at City Hall, got the candidates to come out, and shot some questions at them. The only idea they had was transitional housing. If it’s privately run, that’s like a slumlord. You’re going from living with a bunch of men to living with fewer men. If you had your own little room, in a sense you’d have your self again. In order for people to take care of themselves mentally and physically, be nourished, take their medicine, you name it, every person should have a home. That’s just one of your rights.

I’ve got to be with my wife. I want to have my granddaughters over and play with them on the floor. Without all that, I’m like this fourth class citizen. I have no sense of belonging, in a place that gets paid for me to sign my name, but I can’t stand in front of the building. They say, “Go walk down the street.” Well, all of us stay here. But it’s like I’m some kind of protester when I open my mouth. Because I knew enough to go and see somebody, they were like, “Oh, we don’t want him, because if what he’s got is catching, we’ll be in real trouble.” But that’s what they need. You can’t be a lone activist and have some punch.

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Filed under African Americans, displacement and gentrification, economic justice, housing, people with AIDS in leadership, Philadelphia, Solidarity Project, stigma, treatment access

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