August 24, 2010
Welcome to This Positive Life Video Series! We have with us, Ron Crowder, Executive Director of Street Works in Nashville, Tennessee. When Ron tested positive in jail back in 1991, he wasn't surprised. Being an injection drug user who was sharing needles, he knew he was at risk. Yet, being diagnosed in a time when AZT was the only medication available, Ron, 57, never lost hope nor has he allowed an AIDS diagnosis to stop him from giving back and educating Nashville's African-American community about HIV.
Tell me when you first found out you were HIV positive.
I found out I was HIV positive in 1991.
1991 was the dark years.
Yes. I was actually in jail, and I had had some teeth removed. The dental hygienist in the jail dropped one of the instruments and it pricked her on the leg, so they asked everyone who had saw the dentist that day in jail to take an HIV test. So, that's how I found out.
What did you know about HIV when you found out?
Actually, not a whole lot. You know, everybody who had HIV was going to lose a whole lot of weight; that was my knowledge of it at that time.
Did you start praying? Did you get religious?
Well, no. I've always been, sort of grown up in the Church, so my thing was, you know, hey, it is what it is. You know, I knew the risk. I knew I was an injection drug user. So I kind of reserved myself to pretty much prepare myself to die, at that point. I just didn't want to die in jail. I had just gotten a new eight-year sentence, so once I found out I was HIV positive I positioned the Court for a suspended sentence, and got it, after only four months into the eight-month sentence. I think they was kind of like, OK. They didn't want to deal with anybody HIV positive at that point.
What jail was this? Where was this?
Could you tell us what you were in jail for?
Yes. It was either worthless checks, or . . . no. It was drug possession for resale. Possession.
I see. So you got out of jail, and then what did you do?
Well, I got out of jail, and I started back shooting drugs, for only a very short period of time. And then I went into treatment.
So you were sharing needles, basically.
Yes, I was. Yes, I was. And the fact that I knew I was HIV positive and sharing needles; that's what consciously I wanted to clean myself up with. Because I didn't want anyone else to get infected as a result of me sharing needles.
Did you get treatment? Did you get whatever was available?
AZT at that point. Because, at the time, I had heard somebody say, you know, it was better to take something than not to take anything. But I had very, very low knowledge of the disease itself. A year or so later after then I started doing the work. I started educating myself. And that's what made me found the agency. Because there wasn't a whole lot of education, particularly to the people who was becoming infected the way I did -- you know, out on the streets, injecting drugs, or doing all kind of risky behavior. Particularly in communities of color -- we didn't have a lot of education. All we knew, mostly about HIV at that point was, it was gay, white men.
Can you tell us how you think you got infected?
Oh, I know how I got infected -- by sharing needles.
Did you know the people were positive afterwards? Is that how you found out?
No, I never. I could never. Because I shared needles with so many different people, because I was an IV drug user, there was no way I could pinpoint who, in fact, actually infected me.
And there was no needle exchange back then.
And there is not really any. The state has still maintained that needle exchange doesn't work.
Needle exchange wasn't really popular nowhere in the country then.
So what miraculous journey did you take to survive?
Actually, I'm a pretty open person, and I was pretty open with my status from the word go. [phone ringing] So I guess it was just an act of God that kept me healthy all these years. Over the years, the people that I did shoot dope with, just about all of them are dead.
Did you do anything different? Did you take vitamins? Did you work out? Did you juice?
I've done all of the above. I've taken plenty of vitamins. I used to swim a couple of miles a day. I used to get up and do a thousand push-ups every morning. I've done everything humanly imaginable . . . eat a lot of fruit . . . I've done everything. I've done juices. I've done herbs. I've done everything that I thought would keep me living.
I see. So, your drive to live: do you think that's part of how you survived?
Oh, yes. Oh, yes. I think that anybody give up the . . . and also, I think that the fact that I have been so open. I think the stress of people trying to keep HIV a secret, particularly minorities . . .. Minorities has not done well with the fact of an HIV diagnosis. They don't want anyone to know. They take it to their grave. And I think that what has helped me is, I've always, from the word, from the jump, from when I first got the diagnosis, I went public.
What bad things happened to you, as a result of going public?
Nothing. Not to my knowledge. Not a thing.
You don't think people avoid you?
No. No. If they did, they didn't do it in such a way that I was aware of it. So, no. I'm just an open person.
So you think the people who are fearful of telling others, they might not understand what actually happens when you tell people? They just . . . you know. Or maybe you live in a weird kind of world where people are really nice, and accepting, and tolerant. And most people aren't that lucky.
I think that the fact that I don't care what people think about me; I think those who judge don't matter, and those who matter don't judge . . .. And I've always lived with that concept in mind, and moved forward, you know? When I first got the diagnosis, I was, like, OK; I'm going to be dead in a few years, so I may as well max out all my credit cards and run up all the credit, and just leave it. And here it is, what? Almost 20 years later . . . and I'm in a whole lot of credit card debt.
Do you still owe money from back then?
No. It's a joke. It's a joke.
Tell me when you started getting . . . I guess the first question that's really important is, what was your CD4 count when you were diagnosed?
Actually, my CD4 count has always been around 500. Always. And it's still around 500 or 600.
You're still very active.
Very active. I work 12, 14 hours every day. Recently married.
Let's talk about that. Tell me how you found love, being HIV positive. Do you find it's a particular challenge?
It wasn't for me. Again, I think people have this notion that your life is going to dramatically change because you're HIV positive. And I don't know if I'm extremely lucky, or I'm extremely unusual, or what. But life has been . . . hey, the same for me. I've always had a girlfriend. I've always just lived life as it comes, you know? And once I tell the female partner that I'm HIV positive, and educate them, it doesn't seem to be that big of an issue.
Have you mostly dated negative women?
Yeah I always dated them. Well, I had one woman, my first . . . I don't guess it was my first, but early on; in '95, I was engaged to a woman who was positive, and she died in '95. But she took it to her grave. Even her children didn't know.
I guess '95 was just before the treatment came.
Wow. So you're just out there. You're just not afraid to tell people things.
And so you meet lots of people.
I do. I do. And I think that is what has helped me, that and working. I never even considered going on disability. I never tried it. I've always worked. And I just . . .. Life just kept going as the old one.
It sounds like you've overcome the stigma of HIV. Have you overcome the stigma of being previously incarcerated?
Oh, yeah. Absolutely.
Which is greater, do you think? I know it's hard to measure. Or are they equal?
I guess, to me, I don't let anything stop me. I don't know if I'm weird. I don't know. I've just always been this kind of person that's been open. And, just, my life is an open book. You know: hey, I'm a drug addict; and hey, I'm HIV positive. So, you know, deal with it.
Do a lot of people think you're gay?
Well, meaning, because of the HIV.
Yeah. No, no. I mean, and that's another misnomer about being HIV positive. When I do presentations, the first thing people ask me: How did I get infected? And my question will still be to them: How do you think I got infected? And nobody ever says gay. So, I don't know. I mean, I don't know.
But do you think the source of a lot of the stigma related to HIV, particularly in the African-American community, is the homophobia?
Yes, I do. I do. And the reason: I think that the media didn't do a great job in the beginning. And people are still stuck in that beginning -- what they saw, what they heard, always. I even remember, when I first heard about it, you know, my first thing was, I'm not gay, I'm not messing with any gay people. You know? So I'm not going to get it.
Then, the next thing they came out with: OK, now we're seeing it amongst IV drug users. OK, I had to rethink that then, you know. And I had taken an HIV test before that came back negative. And I was like, oh, God, I got that.
And I went to jail that time, and I had never even thought about it anymore, in between the first time I took the test and the time I was incarcerated.
But you didn't stop the risks.
No, no. Did not stop the risks.
But there was no outreach, either, to you. There was no prevention advocacy.
Now I understand you're doing that kind of work.
So you're going to shooting galleries, and you're trying to help people.
I do exactly the work that needed to be done.
For me, yes.
So it must feel really gratifying. You're saving yourself, kind of.
Yes. Yes. Yes. And it is hard work, but you're right. People ask me all the time, "Why you work so hard? Why you work so much? Take a vacation." And I say, "Listen. If I can save one person from becoming HIV infected, that has a ripple effect." Because if you save one person, you, in fact, save several people. Because then that one person don't infect somebody. So it has that ripple effect.
So what tip would you give to someone who's recently diagnosed with HIV? What would be your advice to them?
Hey, this is not a death sentence anymore. It's almost a chronic illness now. Your chances of getting run over by an 18-wheeler truck is greater than you dying of HIV. Take care of yourself. Change some of your behaviors. Take good care of yourself. And you probably will live forever.
One other question I wanted to ask you was about denialism. I know that, in certain communities, a lot of people say HIV was invented by the government, or that Magic Johnson was cured, or all kinds of stuff.
You know -- and I get that a lot -- and what I tell them is, "Listen. There is a lot of things that we don't know about HIV, but here are the things that we do. So let's stick to the facts. This is what we do know. This is how you get infected." I don't know where it came from, and that's not my job. All I know is that it is here. And this is what we need to do about it. This is what we have to do to protect ourselves. Education is our best tool. Prevention -- that's our way out now.
So you don't get involved in the arguments.
No I don't get into the debate because, hey, people are going to think what they want to think. So I'm not going to argue with them forever, because after the argument, they're still going to think . . ..
How common is it, do you think?
Very. Very. Hear it all the time. And I tell them, "Listen. I don't know where it came from."
Do you tell them you're taking treatment?
And you tell them you're doing OK?
Do you think that's convincing to them?
Oh, yeah, because they see me. They see me. I have friends tell me all the time, "Man, you just look too healthy to have . . .." And I have full-blown AIDS, and been had it since '96. "Well, there's no such thing as . . ." [they say].
When you say you have full-blown AIDS, why? What was your initial CD4? It was 500. But did you have . . . ?
Oh, yeah. It had dropped down to 195 that one time.
And did you have opportunistic infections?
Never had. Never had any opportunistic . . ..
So it's a little legal point. You were 5 beneath 200, and that gave you the AIDS diagnosis.
Yeah. Yeah. And once you get an AIDS diagnosis, you always have it; you don't go back to being HIV. So.
Right. Even if you're pretty healthy.
No matter how healthy you are.
And then I guess I wanted to talk to you about, one thing before we end, is the disclosure. How was it? And where was the first time you told someone else that you were HIV positive?
It may be Atlanta.
And what did they say? Who was it?
I told my family.
Who? Your mother or your father?
My mother, my father -- immediately, once I found out. Now, back then, I was so open I had to kind of back off a little bit. Because I do remember going into treatment and disclosing -- into alcohol and drug treatment -- and the people there kind of started, like, "OK, we don't want to be in the room with him," and all that. And at that time, I think I kind of felt a little of that stigma.
In the recovery places, is that still a problem? That kind of stigma?
Well, see, I don't know. But it's because people don't disclose and they're not as open as I was back then.
I think it's . . . still, in the recovery world, I think HIV is still not really discussed.
No, I don't think it is, either.
Even though that's a population that's at huge risk.
Right. Right. I think I was a little unique in being kind of open way back then. And I think that's what has helped me and kept me healthy all these years.
That's great. Thank you so much for talking with us, and for sharing your story. I hope a lot of people write to you, and share their stories.
This transcript has been lightly edited for clarity.