HIV Frontlines: Executive Director of New Jersey Women and AIDS Network Talks About Gender Issues and Obstacles to HIV Prevention
June 21, 2011
Listen to Audio (34 min.)
It's just interesting and ironic that we commemorated the 30th anniversary of HIV last Sunday. And the face of AIDS has evolved over the years -- or has been more inclusive over the years. And here we are, still. I mean, if you look at the 30th-anniversary coverage in the media, even women took a back seat to that.
It's extremely frustrating. Why do you think, when it comes to prevention and treating women with HIV, women and gender issues continue to take a back seat?
It's scary to think that we're just not important. But I will relate that to the political climate here in the state of New Jersey. Out of all of the issues to fight over, we're fighting over family planning. Out of all the attention that the budget needs, or that the state needs, or that the economy needs, it's family planning. Even at the federal level, it comes down to the cervix. And that's why we can't settle a federal budget because of family planning money.
It really boggles my mind when I see feminist groups that just completely are disassociated, disconnected, and don't take on HIV. As much as you talk about family planning, and the right to have birth control, you can't talk about unprotected sex and not talk about HIV.
There's no glamour in it. So, in the state of New Jersey, you look at the numbers, and you say that one out of three people that are infected with HIV is a female. Out of that number, 65 percent of women that are infected with HIV are African American.
And so in New Jersey, it's a black and brown disease, and it's a disease of women. Now, individually, those pockets of those people -- black, brown, women and poor -- may get some money. But you put them all together, and you'll get nothing. Our elected officials don't even address issues of black, brown and poor. So there's a myriad of reasons why HIV falls under that. There's no glamour in it. You can talk about pregnancy. You can't talk about the how you got pregnant. And so we still just don't even talk about sex. And when you're talking about HIV, you're talking about a sexual behavior. You're talking about perhaps some drug use behaviors. And nobody wants to talk about those two topics, specifically enough, to address HIV. Because there's no good outcome.
We do international HIV. And that's a lot of what we hear. So we're not even going to address the issues of HIV here in this country. We'll address it outside.
And I'm not pitting the national crisis against the global pandemic. But we're not even getting dimes dropped in the backyard.
No. It's a frustration. It's a huge frustration. But there is a certain mentality of, like you said, "It's not in our backyard." That allows us to deflect. And there's still this belief that oppression, and a history of systematic oppression, does not affect people. And so if you've contracted HIV, the disease is looked at as: You did it to yourself. It's a very moral statement because people just believe, "Oh, you've been given all the information and you still chose to do X. And so, in this day and age, if you have HIV, you did it to yourself. Why should I feel sorry for you?" And this is an ongoing attitude in this country.
The other side of it is, there's still a collective that don't believe they need to even address or be aware of HIV. Because it doesn't happen to my type of people; it only happens to your type of people. So what did you do, if you're from my inner circle, to put yourself at risk for HIV? So there are still doctors that won't test women, white women, from the upper class, for HIV.
Right. A few years ago, I went to a gynecologist. And, for people who are listening, I'm an African-American woman between the age of 25 and 34. And so when I went to the gynecologist to get tested, I said, "Hey, can I get an HIV test?" And she said to me, "Well, what are you doing that you need one?"
What am I doing that I need one? I just kind of looked at her and I was, like, "Nothing." So it is about preconceived notions of who gets it that are based on race, definitely. But I also think that there are issues around class and how well I articulate myself when I go into the doctor's office that made her think: She's not one of those people.
And also, I think doctors who don't know anything about HIV, when they deal with women, they are completely afraid of, What if this woman tests positive? I don't know what I'm going to do.
Right. And I'm supposed to know, because I'm a doctor.
I'm supposed to link her to care; I don't know what to do. The thing is that, depending on what test you take, if you get a rapid test, they have to follow it up -- there are all of these things that need to happen. And I just kind of looked to her, and I was thinking to myself, Is she serious?
Yeah. And I have news for you: That doctor's office is also not going to know what to do with you if you are negative, because they have no, "Hey, keep up the good work," -- they have no message.
Right. There's nothing. There's no conversation around it. And so I wonder -- and we hear this all the time -- how many women get lost in the system because doctors don't necessarily believe that the women that come in are at risk. I mean, what does at risk mean?
Oh. You know what? I write grant applications. I'm one of the grant writers here in the organization. I have no idea what that means. Because if you can find your way out of utilizing a label to describe your behavior, then absolutely you're going to use it. If you engage in any of these behaviors, then you are at risk. And I try my best to ... you have to use the foundation's lingo to get funded, but that's not what I use in my day-to-day.
If you've done anal, oral, or vaginal sex, unprotected, you're at risk. I don't then separate you out into high risk, low risk, and medium risk. Because everybody's definition is going to be different, based on how they assess their behavior.
It's just the psychology of how people make excuses and downplay what they're doing. I've heard people say, "Well, my boyfriend isn't gay, so I'm really not at risk." Really? Or, "I'm not black. I'm not really at risk."
I think that this notion of what at risk means needs to shift. Because I think it's holding us back. But it all plays into the morality around the disease. Because if you're at the highest risk, society looks at that as you being the most amoral. It's very scary.
It is very scary. And unfortunately, the scary piece is not going to go away, because nobody is just talking about it. This is the one virus or disease that nobody is making noises about, not in large numbers. And so the movement that was the white gay male movement in the early and mid-'80s, that piece is gone. And so other communities -- and it is communities; it's the community of people of color that are at risk; in New Jersey it is the community of women that are at risk -- we need to make that same level of noise.
I was at a meeting last week, and we were talking about how other diseases or chronic illnesses can have a day of, "Come out and get your whatever tested." We can't have that day. Nobody's coming, because nobody's coming out to get tested. So the shame and the stigma and the silence associated with HIV continue to put us at risk.
We talked about hiding the HIV testing van, because that's what we wanted to do for National HIV Testing Day, behind a health fair, so that people won't realize that what we really want you to do is get tested for HIV. All the other stuff was incidental. While you got your this and your that tested, there'd also be an HIV test. We are talking about having to hide HIV. And you don't have to hide your testing vans for anything else.
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