Sticking with talking about African-American communities, can you talk a little bit about your experience being a bisexual, or non-heterosexual, man living in the African-American community?
Yes, I can. It's really just terminology, but sometimes, as we're all finding out, words are quite important.
There was a collective group. For a while we were known as homosexuals, if we can use that word. Somewhere along the line came a concept, or a word, called "gay," which encompassed men who sleep with men to a certain extent. But "gay" seems to have its own culture. Even now, someone will ask me, "Are you gay?" and I think to myself, "Well, I use different terminology. I say I'm in a same-gender loving relationship."
I'm a man who sleeps with men, although that doesn't mean that in 10 years, if my partner were to pass away, I might not find a new partner and she might be a female. I don't know how that fits into the word "gay," so that's one of those things where there's not another word for it.
I think what happens in a lot of African-American cultures is there's an impression of what "gay" is; and it may not be the exact same thing as what is lived out day to day. There are some people in African-American cultures of faith that I taught, who are heterosexual, whose whole concept of what gay was was what they saw in a parade that was televised. Then there are some who thought that there were no black people who were gay.
Then there's the procreation piece. There are people who truly believe that if you can't procreate, then there must be something wrong with it.
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The procreation piece goes back to what people say about the Bible and homosexuality, or non-heterosexuality, being an abomination and all that rigmarole. Do you face any of this in your church?
Oh, of course you do! If you're in a church, of course you do! There are Christians on every side of the interpretation of the Bible. The reason I said "if you're in a church" is that, to me, that denotes that you're talking about using the Bible as your guidepost.
There are many on different sides of the interpretation of the entire book. For me, coming up through faith, I was brought up in the Quaker way. The Quaker way was to use the book as a guidebook, but you were supposed to have some conversations about what certain things mean, because what it might mean to me -- what I'm reading -- would not necessarily be the same thing as for the person next to me. But in a lot of other Christian settings, that's not the way that book has been introduced to people. Therefore, people come up with all kinds of different interpretations that are true to them and authentic to them.
Everyone's entitled to their interpretation, whatever that is. But at the end of all of it -- and this is still Christianity for me -- there are three things that we're really asked to do, three articles that we're asked to do as Christians: loving your neighbor as yourself, loving creation, and doing unto others as you'd have them do unto you. I don't want to go into the whole litany, but those are the three things that our leader has said that we're to do.
I always say if those three things are being done, then the rest of it doesn't matter. I apply that to HIV/AIDS, because there's a whole piece about feeding the hungry, clothing the naked, and doing good works for folks. You can fight all day about what you believe interpretations are, but if you're not involved in care at that level, the rest of it, for me, doesn't matter. That's how I look at it.
Going back to relationships, specifically your relationship with your partner: Is your partner HIV positive also?
No, he's HIV negative. There's a name for that kind of relationship, I can't remember what it's called.
A magnetic couple: one positive, one negative?
Serodiscordant or something?
Yes! A serodiscordant couple. How has your sex life changed since you found out you were positive?
It hasn't. He knew that going in, but we know how to protect ourselves. It's been working for more than a decade, so we've been doing the agreed-upon prevention methods if we're having sexual intercourse.
How did having HIV affect your relationships before you were with your current partner?
For me, for that whole period of time after my diagnosis, I wasn't as active. More or less, anyone I was dating needed to know before we were having sex anyway. That was just a cardinal rule.
It was funny because it sort of gave me that group of individuals that, once you told them, were like, "Oh, I don't know if I can do that." It really also let me know that they weren't the person for me anyway.
How do you decide whether to disclose your HIV status, whether it's someone you're just meeting or a potential partner?
That's actually always a good question. What I do is I decide if it's necessary. My first line of defense is: We're all people living with HIV/AIDS -- everybody is, because we live on the planet, so we're always living with HIV/AIDS somewhere around us. The other real question is: Are you infected or affected? I usually leave the conversation there.
I don't disclose that much unless it's really going to be helpful for that person to know. Everyone always asks me, "Oh, you seem to work so much in HIV/AIDS, are you living with HIV/AIDS?" I just say, "We all are." [Laughs.] Then I just give them that whole answer, and then if they really need to know, I'll know in that moment.
Switching gears a bit: You founded an HIV/AIDS organization, but what were you doing before you were diagnosed? You were pretty young, but what sort of work did you do?
Actually, that's what had brought me to New York. I worked in the banking industry. I just did administrative work, and I did that up until I went into my own self-imposed retirement in 1996. I had applied for social security, and that was in the days when people were saying, "Oh, you better apply before they say no." So I did. They actually said yes! [Laughs.] Right away! So I thought, "OK, this will work for a little while."
This was around the time when I had gotten ill, too, so it gave me some time to reflect on what I wanted to do next. I realized that I could probably go back to work full time if I wanted to do that. I really had a conversation with myself and realized that I don't necessarily want to do that. It's not that I just want to sit and watch television all day, or go and take trips and things like that. My next thought was, "What could I do?" The thing that came to me was just being of service to other people living with HIV/AIDS and/or the people that are advocates for them. Is there something in that area I can do? That's how I founded the group that we started.
Conscious Contact of New York, Inc., came about because we saw some gaps in service, around 1998. Because I wasn't working full time, it gave me the ability to work with both the City and State Departments of Health and their prevention planning groups. Some of the things that I saw as a gap in service weren't intentional. It was just that the government can only do so much, and they can't do advocacy. Advocacy groups can do so much stuff, but they can't do some other things.
It's all about communication. There was a need to be able to share upcoming HIV/AIDS educational events across the state. That's what we did. We assembled a few people and we started just posting an HIV/AIDS event that will happen in your area here or this area there. That's what we did and continue to do.
What has doing that work taught you?
It taught me that there is still a lot of secrecy around HIV/AIDS in certain areas of the state. Once you leave New York City -- once you leave Manhattan, for the most part -- you have certain areas where HIV/AIDS is still very, very quiet. Once you get out of the five boroughs, Yonkers and beyond, Long Island and beyond, it's still extremely quiet in the more suburban areas. Every time there's an event, you'll get a lot of people who will turn out that want to hear more about it, but it's not on the daily news every day.
The way that we designed ourselves, so that we wouldn't have to have a lot of salaries involved, is we decided that we would be more bridge-builders between communities and existing organizations. It's just been interesting to work with youth through Planned Parenthood, and we're finding that HIV/AIDS and other STDs [sexually transmitted diseases] are still on the back burner for most communities in New York state.
We've all, as you say, been living with HIV/AIDS for 30 years now. Why do you think there is still this silence and secrecy and quietness around HIV/AIDS?
Here's my cynical side: It's a billion-dollar industry that does not want to be shut down. Therefore, if you don't teach people how to eradicate the disease, then you'll always have the disease, so people will still have jobs, organizations will still exist. There really is money to be made. Research will still go on.
I liken it to polio. At the height of polio, you had what you have now with research and this and that, but once we found a cure, do you see polio offices open anymore? The whole infrastructure is gone.
When you look at it in dollars and cents, it's a billion-dollar business worldwide. Multibillion-dollar business, I could say. If you really had a cure -- and not getting infected is a piece of the cure -- and you put that all together for the next generation, all the businesses related to HIV and AIDS would be gone. That's very cynical, but it's one reason.
How do you explain, then, the fact that there's not as much of that silence in cities, as you mentioned before?
I think because in cities, in the five boroughs, you have a little more autonomy speaking about HIV/AIDS. But when you're in a small town area, the moment you talk about it, then it's you whose face is in the newspaper in that area. There's still all this stigma that's attached to it. It's not just from individuals, it's also from institutions. I think that's another piece as to why it's quiet.
Also, it has been 30 years. Some people just want to move on to other issues.
What do you think are the biggest HIV-related issues that need fixing nowadays?
It comes from all different areas, but I do think that at the core of all of it is education about how the disease is prevented and really implementing the education. I think until we do that, we'll still go around in circles about it all the time. I think that we really have to -- and sometimes I don't even want to say the word "educate" anymore. I want to say, "Implement the education that's already out there."
Use the tools that already exist?
Yes. I'll give you an instance: One of the denominations that I work with -- because I work with denominations outside of my own -- they were having their youth summer camp, which draws around 7,000 youth. This is an evangelical denomination. They called us in to help them because this was the first year that they're going to have workshops for the youth -- and when I say youth, I'm talking 13 to 18 -- on sexuality education, and prevention. They called us in to help them create that. Condom use is one preventative method for those who are engaging in sex. Abstinence is another preventative method. There are all these different methods.
They took a vote to let us do the sexuality education, and to do the prevention method about condoms. But their big fear was that they didn't want the families of the youth that were coming to think they were promoting sex. So they decided that we could give all the prevention materials, but we needed to come up with a package that basically had little slips of paper in it that said, "If you were getting this package at a workshop at your church, a condom would be in it. But at this summer camp, we just have these slips for you."
It's always that compromise. Should you give them all the information, or pieces of the information? Some of the kids that are on the planning committee were livid -- not because they were planning on having sex, but they wanted to have the actual condoms so that they could do live demonstrations so kids would know, their peers would know, what this really is. They basically are now saying, "You adults always don't give us all the information. That's why we get in trouble!"
It's always a two-sided thing. For me the issue is because I really do HIV prevention under that comprehensive sexuality education piece. Condoms are a very big piece for us. I can go with this because at least I can say we're getting half the job done.