When did you realize that you were HIV positive?
I had finished a graduate program at the New School in New York. I had accepted an offer to do graduate work at Stanford. And so I was in transition, moving from New York City to Northern California.
A relationship I had been in in New York ... you know, there were some suspicions that things might have been not what I thought, in terms of their status. And then upon getting to California, I started noticing some symptoms that seemed a little abnormal. I had done HIV work previously, at least as a volunteer and that kind of thing. So I was probably a little more aware and educated about the virus than some people.
However, I was new to California; didn't know anybody. And so I deferred my sort of six-month annual checkup, was abstinent, didn't do anything, just because I wasn't sure about me. When I'd gained what I thought could have been a support network I tested. And it wasn't so much a shock, because there were some things going on in my body, some night sweats and, you know, lymph nodes, and a bit of weight loss, as well.
Did you think you were at risk?
I was with someone who was also very much connected to HIV work, on the medical side, actually. So I think there was a bit more trust, in that situation. You know, we're both educated. And I think there's a different aspect to the epidemic, because there's a lot of shame that comes with being educated and being upwardly mobile. And I think a lot of people that we lose, it's not so much that they're down and out and don't have help; they're too educated, and too proud, to seek help. And that was the case with the person I was seeing at that time.
It was my HIV diagnosis that prompted me to go back to him and say, "Look. It's too long in denial and it's time for you to figure out what's going on." You know, I didn't want to shame him or make him feel guilty. And as I was saying, we were 90 percent safe. I think 90 percent safe had worked for me for seven years. So, I was like, hey, there may be a slip-up here or there. If I'm topping there's less of a risk. Just, a lot of things; even as I was educated, there were just some common mythologies out there, around who was more susceptible, you know. And so, you know, slip-ups that happened here or there had pretty much kept me safe for that period of time.
For how long were you with this person?
It was a short-lived. I was probably dating him for maybe eight months. And then of course the decision to go to California for school, you know, that kind of ... once I knew I was doing that, we continued to see one another. But the relationship was kind of dissolved in preparing for the departure. You know, I wasn't going to stay in New York.
What year did you find out that you were positive?
June 27, 1999. I remember that.
That's 12 years, almost.
Yeah. Yeah. It was a Pride weekend, and a week before my birthday. Usually every year I'm marking not only my birthday, but sort of my other birthday -- which is the amount of years I've been living with the knowledge of my HIV status. So I've probably been positive, obviously, longer than that, as well.
When you heard the words that you were positive, what did you think?
You know, it sounds a little odd, given what I've said, but there was almost a sense of relief. Because I knew the things that were going on in my body. I had a negative test. And I had thought something, maybe, before, and my test came back negative, in December of '97. So it was just kind of weird.
When you are a black, same-gender-loving male -- and so many of the messages around the epidemic are that that's who is going to get it. Or you still live with the resonance of certain religious messages, that this is the lifestyle you choose; this is what's going to get you. You know, it was almost like the Boogeyman stopped chasing me at that moment. You know: I have it so what do I need to do to live? As opposed to: I'm obsessed with trying not to get it.
I had dated positive men; the ironic thing is, I had dated positive guys. And that's not who infected me. So the lesson from that, and something I relay to other people, is that you may, in fact, be safer with someone you know is positive than someone you're not sure is negative. And so that was the ironic thing: I had dated positive guys before. They were transparent with me, open. We practiced a lot more safely because of that. But you know, in this situation of presumed negativity we sometimes took risks, or took chances ... you know, "90 percent is OK."
What was your support network like when you found out you were positive?
It was in Northern California. I think a lot of it for me was I was in an area that I felt had a lot more awareness and, just, sensitivity to that issue. And so that was definitely helpful. I was at Oakland at the time, and people were very supportive, generally.
I didn't really have intentions on disclosing, initially. But I did some work at a youth center, the SMAAC (Sexual Minority Alliance of Alameda County) Youth Center in Oakland, at the time. And they were doing a session. The question came up: What would you do if you found out you were HIV positive?
And I'd never heard so many suicide methods. And here I am, maybe two months into being HIV positive.
How old were you?
I was about 26, 27 -- I had just turned, 27. So, statistically, I was in that population of YMSMs (young men who have sex with men), or a little bit over that, in terms of when I was infected.
So you're hearing all these messages about suicide.
Yeah. And I'm sitting there, like, "OK; I've been positive now for two months. And I'm planning to live with this. I'm going to fight." And I know I could have said, "Oh, I know this friend, and he's decided he's going to fight, and live."
I was like, that's not going to be compelling. It's always ... we always talk about HIV sort of one-person-removed. And I was like, "That's not working." So I decided at that moment that I was going to come out to them about having tested positive. And I said, "You know, I'm not looking to jump from the Golden Gate Bridge. I'm consulting with my doctor, and I'm going to fight this. And I'm going to live with it."
And they had a moment. Because I'd been a mentor to them. And they were concerned: "Oh, we're so sad."
And I was like, "Don't be sad for me." And I knew at that moment that there were probably young men in that group who either were already positive, or who might become positive. And so I wanted to really shake that up, shake up that idea that that's how you deal with an HIV status -- that you think of a way to die -- and really fight that stigma and shame that's so often associated with HIV that it actually prevents a lot of people from getting tested, or from getting into care. And so that was a decision that changed the way I dealt with it after.
What was your linkage to care like once you found out that you were positive?
I had the best doctor, ever, may he rest in peace: Dr. Robert Scott. He passed away in '09. But he told me the first time I went to see him -- because I'd gotten an earlier prognosis from a doctor who was kind of fresh into HIV care, at a general kind of hospital setting, that if I didn't get on some medication really quick because I had a super-virus, that I wasn't going to be here in another year or two. So that was a little scary. My first T cell count was 192; so I was below 200.
So you must have been living with this disease a lot longer than you thought.
Well, no. Because my last negative test was in December '97. So that's why they projected that it was probably a super-virus, because you don't progress from a negative test result to 192 T cells in a year and a half. So they were concerned. That's why he said, "Well, you know, obviously if you've got a virus that's progressed at that rate, you've got to get something done fast."
But I think Dr. Scott approached me from a very different space. He was a same-gender-loving doctor, physician. That was helpful. Because on the other side of the industry there was somebody I could relate to who knew his stuff, but who also talked with me with compassion, who told me there was nothing wrong or bad about sex. He'd always ask me, "You got a boyfriend yet?" And I just did not expect that in a care setting. I expected to encounter some of the same shame and sort of being shameful about situations. And he just totally made it a comfortable place, and really helped build me back up.
Once I had started to feel good about myself again, my health got better. And so that was really; that's a big part of the health piece that I don't think people talk about ... is how when you don't feel good about yourself, you're not going to adhere; you're not going to take your medication on time; you're going to skip doses. You're going to get caught up in other behaviors and cofactors, like alcohol and drug abuse, that make it really challenging.
I think my primary care physician is a big part of why I'm still here. He told me at the first visit; he said, "Let's look at it this way. This is the worst your health is ever going to be." And I believed him. And that's been true. Like, I have not ... that 192 has gone up to as high as 1,200, and is now at 800; so I've never, you know ... And it's because, it's primarily because I believe I'm worth it. There's a lot more work for me to do.
Yeah. So let's talk about your music. Let's talk about some of the books. And let's talk about some of the activism that you've done.
Definitely. Back in, I think it was, 2005, we started what was called Brave Soul Collective, which was a kind of grassroots art ... artists who are using the arts to effect change around HIV/AIDS. And that was already in line with what I'd been doing. I had already been a part of a rap group called DDC, which was a pioneering queer hip-hop group, and so I had already started doing music. My first book, Red Dirt Revival, was kind of the book ... when I put that book together, I didn't expect to be here. This was kind of: this is going to be the book I go out on, and so I'm going to tell everything; I'm going to be honest; I'm going to be transparent; I'm going to talk about the real issues.
I put the book out, and my health got a lot better.
So you had gotten sick during this time?
It was just not ... I hadn't received the results of being certain that the disease was going ... I was taking Crixivan; that drug made me sick. It was improving my stats but I was not feeling well a lot of the time. And so I just wasn't sure. And so I wrote that book in that period of uncertainty.
I had seen my mentors -- Marlon Riggs, Essex Hemphill, all these other men that I admired and was drawn to, late '80s, early '90s -- they were all gone. Like, all of my direct mentors, many of my direct mentors, had passed on from HIV. So I was, in some way, even though I wanted to believe Dr. Scott; I was preparing: well, if I do go out of here, what's the message I want to leave behind?
But that incited a level of bravery with my creative projects that I wouldn't have had. I probably would have been in hiding to some degree. I'd always considered myself fairly out.
Out in what way? As same-gender-loving? Or out as HIV positive?
Same-gender-loving is odd for me, because I'm both-gender-loving. I'm gay identified, but not gay, if that makes sense. I say that because I don't run from the gay label. It's not something I'm ashamed of. But it's also a little dishonest of me. And it brings about a shame about the relationships I've had with women if I just claim to be gay and I don't acknowledge my sexuality. So in more recent years, I've been saying gay identified, or that I'm bisexual.
But, yeah. But even that is sort of a, you know ... how do you go out of one closet and back in another? And so dealing with HIV was, yeah, it was another closet. Do I stay and hide it, or do I decide to just be out and transparent about my status?
But, yeah. The book was ... the book was kind of a tell-all. You know, I remember the day it came out and I just remember being, like, "Wow, it's out there." And people know things that happened to me. I talked about being molested as a kid, which men don't talk about. I talked about domestic violence in my home, and how it implicated family members. My mom, my dad, who've since kind of reconciled around the truth of that story, have been working towards really having a good, honest, real relationship with one another.
But it really took some rough stuff to come out, and let's work through this. So, let's not pretend. Let's do the work. Let's not pretend that certain things didn't happen growing up.
Working with black MSM, what have been some major issues that you've seen around prevention and condom use?
There's a disjunction between the number of people who are infected in the black MSM community and the shame that exists, and the shaming that exists, in the community. For example, that people even still whisper and chat and say negative things about people being sick in a club -- where probably a third of the people are HIV positive ...
So you're saying there's even AIDS phobia within a gay context?
Oh, there's huge AIDS phobia within the black gay culture. And it's ironic because there are so many people who are infected. And oftentimes that AIDS phobia is internalized. So you have people that are positive that are saying negative things about people who are also positive. Because, again, it sort of pushes the speculation maybe away from them.
In being visible and out, it's been good pressure. I think I'm always very cognizant about appearing or looking healthy, so people that follow my little Facebook workouts and the exercise ... that's not just about vanity and, like, I just want to show my pictures. It's like, no; like, I work out. And there is that pressure to present this healthy body that's not Magic Johnson. I'm not Magic Johnson status; I'm Tim'm West. So it's a little bit different. I think people can relate a little more. They connect. I've had positive guys go, "I'm going to start working out again."
And I think that's good. You know, like, taking control over your health and your body, and using it as a motivation to be strong. So I think that's been a good thing, in terms of the way that my family has reacted to it. They're still working through some of the sexuality stuff. Like, you know, I think it's easier when I'm single, and I have been for a few years now. I think when I've been partnered, you know, they have to deal with sexuality in a very different way.
And I think just the connection between ... there's a relationship between the homophobia in the black community and the crisis in the black community. You know, we still fail to talk very honestly about HIV/AIDS. Even my sisters, and women, you know, talking about ... real conversations about sexuality, and bisexuality in men.
I've had conversations with women I've dated: "Don't you just -- shouldn't you just -- pick a side?" I'm like, "That's not the way sexuality works. It's not a pick-a-side issue."
Right. It's a spectrum.
It's a spectrum. And, you know, I had this one woman say to me, "Well, you know, if you're dating me then you have double the options!"
I'm like, "We're in a monogamous dating situation. I didn't think I had any options." You know. But there are a lot of associations, or a lot of conversations about black bisexual men, in particular, as DL, as vampires, as hiding. They're gonna get you! And it's created this big rift between black men and women. You know, men who are often infected, some of whom may have led bisexual lives before, and there's almost like, well, who are they? Like, who are these bad people that we need to get?
Mm-hmm. "We need to snuff them out."
Let's have an honest conversation that not everybody's straight, and not everybody's gay, and that there's a space in between that, that because we're not talking about it honestly, we don't create healthy spaces to work together to get at the epidemic. And that's not the only way people are getting HIV; let's talk about women taking more control over their bodies and protecting themselves first, as opposed to leaving it to the man to protect them. But there are just so many things that need to be opened up.
I'm encouraged by some of the conversations I've had. I'm encouraged that women have started to join the fight. It's a little bit unsettling that it happened more so when they started to see their numbers come up.
Which is something that ... you know, black gay men were dying of AIDS, bisexual men were dying of AIDS for years, and the community really never said anything. It wasn't until black women ... all of a sudden, you see ...
And then all of a sudden we have a crisis in the black community.
... You see a lot of organizations popping up; you see a lot of stories popping up. And so it really kind of says, "Who do we value? Who don't we value?"
So when I see that: it does. It does, because I lost so many people; I lost so many friends. I'm glad that more people are involved and that there's awareness. But I almost feel like if we could find ... for some people, I feel like if they could find a way to save the women and "let those faggots die," that they wouldn't have any problem with that. And that's why we need our sisters also challenging homophobia. Because it ultimately affects them; we need to really bridge these gaps. So whenever I do get to meet with women's organizations in Chicago, I'm like, "Let's work together to do events together. Let's collaborate." Because HIV doesn't discriminate; we do.
That's a really good point. So I just have just a couple questions. What has dating been like for you since you've tested positive?
Whoo. It's been hard. That's been the hardest thing about being positive. I think I got the health bit under control. And, in fact, when I lose control of the health bit it's often connected to some of the stress and anxiety around being someone who is ... I think I'm a born partner. I'm better at everything I do when I have that in my life. But it's been really challenging, especially because I am publicly open about my status. And so I necessarily implicate anybody that wants to get close to me. And someone has to have really thick skin and not really care what people say or think, or there has to be a level of discretion sometimes around my relationships that I'm not always that happy with -- that I kind of have to keep my relationship a bit of a secret. So that's been; it's been a big challenge area.
And do you find that that level of discretion has been for women and men that you've dated? Or do you find it to be more women?
Interestingly, I've found that the women I've dated have been a little bit more comfortable with not caring, you know. Because, one, they're dating a guy who is gay identified or openly bisexual; so they're just, like, "Oh, here's something else about this guy that ..." you know. I think that my status has been challenging in dating women, because some of them want to have children or families; and that becomes a challenge. It becomes very complicated.
Yeah, the whole notion of sperm washing is ...
... Is there.
Yeah, it's there. But for some people, it's not realistic.
And it's expensive. I'm a working class (at best) brother. So, you know? I don't have $10,000 to get my sperm washed so we can have a baby. And I've raised a daughter who is grown now. In some ways I have a family ... so the second family thing ... Whereas, I think, with guys, I think there's also: HIV has been a part of our world for so long that you meet more guys that are a little bit more comfortable with the idea of dating someone that's positive. But, again, people knowing that they're dating someone positive, or someone who's publicly HIV positive, can sometimes present challenges.
So I've had to be patient. I've learned that I can't draw a hard line and say I'm only going to date people that are out, or that are comfortable with me. I don't necessarily know that another activist is the best partner for me. And I think that there are people out there that could potentially be very great partners, but just have a very different way of dealing with that.
So, stepping back from my sort of, you know, soapbox of HIV and activism, it's sometimes meant that I've been a little more reserved about it in certain contexts ... out of consideration for somebody else. I remember, I performed an AIDS Walk in San Francisco in 2009; and I remember getting out there -- there was like 25,000 folks -- and saying, "I'm HIV positive." And at that moment, it felt really intimidating. And I'd been living with it, at that point, for 11 years. But it was, like, wow; they know my HIV status.
In the abstract, we all care about HIV and whatever; but how many people that were there are saying, "Oh, that guy's got a disease"? Or, "I wonder what he did to get the disease?" And all the other things that are associated with that.
But I'm glad I do it. And I think even at that event there were people that came up to me that said, "Hey, I just tested positive last week, and I'm really encouraged by what your did, or your performance." So I'm always reminded.
And I would just hope, where the dating thing goes, that somebody is smart enough to realize they've got a pretty special guy, who can be in integrity about his status, who can speak about it. It's not a self-indulgent notion to ... You know, I personally could care less that anybody knew my HIV status. It's not like, oh, I'm being so selfish; but I just know the power and the impact that it has for people to be able to see someone who has ... I've done speeches at schools and auditoriums, where I've asked hundreds of students if they knew anybody who was HIV positive, and not one hand goes up. And so I get to say, "Well, now you do." And then I tell my story. That's a few hundred more people that can say, "Oh, I know somebody that's HIV positive. And I would have never known by looking at him. And he's this cool, hip-hop guy."
And so that really ... every time you do it, you realize it affects a different group of people, that you get to kind of expand people's awareness in that way, and people's sensitivity in that way.
How does your daughter feel about your status? And what was that like, when you talked to her?
She's pretty much known from the time that I've been most active in her life. You know, she's 23 now.
How old are you?
I'm 39. Yeah. So, you know, I think, to a degree, I've kept her out of my personal ... well, my creative stuff. Like, it's only been in recent years -- she's graduating from college -- that I have been more vocal about her being in my life. Because I just didn't want to muddle her life with, you know, "Oh, your dad's HIV positive;" or, "Your dad's gay;" or, "Your dad's whatever." "Oh, Tim'm West is your dad?" You know. So it's cool. She's an activist and a poet and an actress. She lives here in Chicago. It's probably one of the reasons I'm here. We have a great relationship. She's wonderful. So, definitely a motivating force, in that she encourages me to be open and honest and do what I do. So, it's great.
The final question I want to ask is: what would be your messages to someone who's just tested positive, who's feeling at a loss?
I would say it's important to own those feelings. Even though I was saying there was a sense of relief about finding out that what I knew was going on in my body actually had a root ... you know, it's like if I was told I was negative, I would have been really, like, OK, what else is going on? Because there's some crazy stuff going on. So I meant relief in that sense.
But, you know, it's OK to own those moments where you're scared. I definitely think it's important to find a support system, people you can talk to. HIV is really interesting. It really tests your relationships with people. So if you think you've got some good friends, disclosing your HIV status will certainly test that.
But it will also test it in some good ways. Because if people fall off because of your HIV status and don't become stronger friends, and don't learn to support you, then you didn't have very good friends. So that's the other side of it.
With disclosure, I think the great thing about disclosure is that it really shows you who people are. And if you're concerned about not having people to date, or whatever ... it's like now, you know, when I do choose, or when someone does choose, to deal with me on a romantic level, they know. And there's no better feeling than someone knowing and choosing: "Hey, I think that you are certainly worth it," you know? As opposed to living in that shame.
I would tell people it's a disease. It's a biological/physiological thing. It's not a shame/psychological/social thing. And I think sometimes we take on other people's issues.
You know, I don't have an issue with my HIV status. HIV affects my immune system. Really, that's what it is. So if you're bringing -- if someone else is bringing -- their shame and stigma to me, I'm like, "Well, I hope you work out that issue." Because HIV, the way it manifests in my body, is I need to take my medication; I need to stay healthy. It's a health issue; it's not a stigma/shame issue.
And so I think it's important that people really distinguish those things. It's about taking care of your body and your health, and the other stuff that's associated with it doesn't have to your stuff. And if you think about people who are diabetic, or who have other kinds of diseases, and cancer, and how they're not made to feel shameful about those things; I think I try to deal with HIV in that same way.
I think it's also important as an MSM: I contracted HIV in a monogamous relationship. And I think the idea is that, oh, men are sleeping around and being promiscuous, and whatever. You know I have promiscuous friends that are still HIV negative. You know, it only takes one time. But I think sometimes the assumption is that, you know, MSM are just out there, jumping on everything that humps.
In fact, when I did HIV testing in Houston, most of the people that I tested that were positive, that got contracted in what they believed to be a faithful relationship. So I think that we need to talk about. You could be doing all kinds of things in parks; as long as you're using condoms you're safe. And you can be in a relationship, where you're more likely to let your guard down, because you're trusting somebody, or the intimacy you want to feel that closeness and that trust. So, yeah. I mean, what does it mean to want to feel somebody and to be completely connected, with the assumption that you're both negative? That's where a lot of this stuff happens.
And it's interesting when people make those distinctions: "Well, I don't know if I want to date anybody that's positive." It's like, well, you should be treating everybody like they're positive; so there shouldn't be really any difference, you know. Because that's when I became more vulnerable. It wasn't with the positive guys I was dating; it was with the ones I believe were negative.