June 21, 2011
This is Kellee Terrell reporting for TheBody.com, and welcome to HIV Frontlines. Today, we will be speaking with Monique Howard, the executive director of the New Jersey Women and AIDS Network (NJWAN) in New Brunswick, N.J. Good morning, Monique. Thank you for joining us.
Thank you very much, Kellee. Thank you for having me.
So, let's get started. When did you begin working in the HIV field? And why?
Well, it's a long story. And just to give a background of who I am, and how I got here: I graduated from college in 1989, and I started working in a reference laboratory, which is now Quest Diagnostics; it was, at the time, MedPath Labs in Peterborough, N.J.
I worked in a laboratory specifically identifying microbacterium, which is the organism that causes tuberculosis, or TB. That's my specialty. We were getting a lot of specimens from the largest city hospitals in New York, and large urban hospitals in New Jersey. And we started noticing that my department and virology were sharing a lot of the same specimens. Virology was doing antigen testing for HIV and a lot of the HIV tests, as well, very early on.
My specimens that they would borrow would be positive for HIV antigens, and their specimens that they would borrow from us would be positive for TB. So we were starting to look at the relationship between TB and HIV. This was '89, '90, and '91.
Low and behold, since we're grunge workers in the basement of a whatever, no one pays us any attention. But we saw that there was an interconnectedness between HIV and TB. When I first started working at the lab, we had 60 specimens on an average day to test for TB; 100 was a high day. And by the time I left, which was about three years later, 220-250 specimens were the average day, and 300 was a heavy day.
So we quadrupled the amount of specimens that were coming in, and then we also quadrupled the number of specimens that were positive. I really was interested in: What is this HIV thing?
I was born and raised in New York, but the impact was a lot bigger then than media was paying attention to. I went back to get my master's degree. I have a master's in public health, community health education, because I really wanted to look at, or examine, the role HIV was playing, particularly in communities of color. Because that's where these hospitals were. Most of the people that were using the city hospitals at the time were in communities of color, people of color.
That's where I started. Took some fabulous classes. Had a wonderful internship at Newark Beth Israel Hospital in New Jersey. So, I started working with women and HIV-risk-reduction programming at that time. And then worked with some federally funded researchers who created curricula around HIV-risk reduction, pregnancy prevention, and all the other issues that fall under the umbrella of sexuality.
I went back for my doctorate in education with a focus on human sexuality in program design; happened to have come across NJWAN along the way in my travels. I did my first workshop at one of their conferences in the early '90s; was excited that the organization was there; and ended up on the board, and in the position of executive director. I've been here since February 2003. It's been a wonderful ride thus far. The organization does phenomenal work. That's kind of how I got here. I've always been interested in the role that I can play in helping communities of color address the issues of HIV.
What does the New Jersey Women and AIDS Network do for its clients?
New Jersey Women and AIDS Network, or NJWAN, has been around since 1988. It was started from a small group of service providers because they understood the role that HIV was going to play in the lives of women, particularly women of color, in the state of New Jersey. And so, very early on, it started out as a type of service providers' organization. It was around capacity building -- although that wasn't the word to use at the time. But it was to provide women-serving organizations with the skills to manage the influx of women that were going to come in that were HIV positive, and to provide AIDS service organizations with the skills to provide services to the number of women that were going to be coming in.
And then the numbers began to increase disproportionately, and service providers were not able to handle the number of women that were infected. We became then a service-providing organization. So by the end of the '80s, we were providing a program called Sister Connect. Sister Connect was a support group/life preparation course that was six months long that met twice a month for about four hours. The question is: Why did it last four months? Because that was the amount of time a woman had from diagnosis to death. And Sister Connect was the bridge between that. We still have some graduates that are alive; so we have some graduates that are 23, 24 years into the making of NJWAN.
That's what it did. It provided a level of support and encouragement and empowerment that other organizations didn't do. And so my work here is not necessarily just about creating a program, but creating a program that embraces women and supports them throughout their life of HIV, and living.
It's so interesting because you're talking about the late '80s, and having these programs for women. And yet, the media really didn't make the connection that HIV was a women's issue during this time.
I'm not quite sure they've made it in the 2011s, either. But what was going on in the '80s is: Unfortunately, we spent those 10 years hunting, looking for the needle in the haystack, and what was the real connection. And is it these people? Or those people? Or whose people?
Women, we're nurturers by nature. That's what we do. We nurture, and we take care of. And so when we're sick we put it on the back burner to take care of other people. We were infected with HIV, but we were taking care of our loved ones, and the majority of them are males who were infected with HIV. So that's what we were doing. And women's health issues don't get the attention that generic health issues get. By that I mean the other health issues that affect both males and females.
But the women-specific ones do not get that level of attention. And so the attention was brought to the four Hs: hemophiliacs, heroin addicts, homosexuals, and the ...
Haitians, yeah. That's where the attention was. So the attention was not on women. And it still isn't.
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.
And so when women do receive some type of attention, it's an attack. But, yeah. We're just always back-burnered. Why? I don't know. That's historically how things have been. The thing that I'm challenged by is that women's groups can't get together for one unified voice of, "Listen to me; I'm talking now." From that, you can hear our individual issues. But we're not even being heard as a collective.
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.
Right. No, it's true. Some of the programs in the salons are set up that way; a lot of times, when you are dealing with older women, not all of them are very comfortable talking about sex.
I interviewed someone a couple of years ago who said, "Well, we have to talk about heart disease, and then we have to talk about breast cancer. And then we kind of stick HIV in there." And it's just, like, really? This attitude still exists in 2011. It just really, really amazes me how far we've come, and how far we haven't.
Yeah. I don't know if we're not angry enough; we're not frustrated enough; we're not taking to the streets about it; we're not asking our elected officials about it; we're not asking our neighbors; we're not talking to our doctors about it. There's just nothing.
Yeah. It's sad. It's frustrating. It's really frustrating. It just isn't on the radar anymore. I mean, it is, but then it's not. I just don't know how seriously people take it. And I also think that there's a lot of misdirected blame around gay men, down-low men, being the ones that have brought it into the community, and the women are just completely taken advantage of -- it's pitting one community against the other, which is very counterproductive.
Now, the agency, we are doing something. And so one of the programs that we have, which is our HIV awareness campaign, "I Stand With NJWAN," is about that. It is about bringing awareness to HIV. And I'm from a research background, so I know that awareness doesn't equal behavior change. But you can't work on a behavior change piece if you're still in denial that HIV exists.
And so, bringing HIV 101 education, and information and awareness about HIV, to the streets is critical, as is trying to sign up people, hold roundtable discussions around HIV and the issues that are surrounding HIV, and bringing the awareness to outside of our choir. Because all AIDS service organizations, we all have a choir. And when we have an event, our choir comes; but how do we bring it to the masses? We just need to be really creative and strategic on how we educate the everyday folks about HIV and AIDS. So that's one of our programs.
We also have a theory-based Safer Sex Boot Camp, which is a really intensive HIV 101 program intervention that teaches skills -- teaches communication skills and condom use skills -- to reduce the risk of contracting HIV. So those are some prevention initiatives that we have going on that we're hoping work. And some of our data does demonstrate that people are reducing the number of partners that they're engaging in sex with, increasing the times that they engage in sex and use a condom, or bringing up the topic. That, in and of itself, for many of the women that we work with, is a big thing -- that they can even bring up the topic of HIV.
That leads me into the next question around what are some of the challenges and obstacles that women and your clients face in talking about condom use? And actually treating and dealing with prevention with women who are positive and negative?
From the prevention perspective, it's still: Can women carry condoms and not be thought of as a slut, or promiscuous, or however?
will.i.am says it's tacky to carry condoms.
And you know what? The thing is that it brings you back to Charles Barkley who said years ago that he's not a role model. Part of me understood that. He just is going to work. His job just happens to be playing basketball nationally, internationally. But he's not a role model. He should not be the man responsible for raising your child. But his voice, whether he wants to acknowledge it or not, is significant.
And will.i.am's voice is very significant. So there's a level of responsibility and accountability that he has when he says something. It's very damaging that he said that it's tacky for women to carry condoms. That's actually very damaging. Because the work we do every day is making women feel OK about carrying condoms, about learning how to use them, and about bringing up that conversation. And so that one comment just destroys the work that we do that saves the lives of women.
Yeah, it does.
And so that shifts all of the barriers right there around our society's support of women who carry condoms, and know how to use them, and will have the audacity to say, "No. I'm not going to have sex without a condom. We can have sex, but it's not going to be without a condom." And having a response to all of the excuses that are out there: "I don't have one with me." "The store is too far away." "It doesn't fit." "It's too big." "It's too small." "It smells." And having responses to all of those that are realistic.
Because we're sex positive, and so, yeah, I want you to have sex at the end of the day. But I also want you to have safe sex at the end of the day.
How do you address the women for whom condom negotiation is damn near impossible? Because I think that this is something that we know exists, but we don't necessarily publicly talk about it. Because, for a lot of people, no matter how much condom negotiation training you give women, and as much sit-down time and therapy that you give women, if their lives are dependent on a man, talking doesn't always change their outcome. And so how do you personally cope, knowing that, doing the work that you do? And what do you guys do? Because so many women are just going to say, "I can't."
Yeah. You know what? You are absolutely right. There's a lot of, I'm not in control of my sexuality issues that many women deal with -- because of violence, or because of just control issues, or just the life issues. Those pieces are really hard. And there is no way that a woman who sits in a class for three hours is going to be the pro-condom woman at the end of the day. But there's a whole slew of baby steps.
So one of the things that we do at the network is, we create a network that you can keep coming back to and call up, and we'll continue to see you and move you toward condom use. So maybe it's not, you use condoms by the end of the month. It's, can you bring up HIV in a conversation? Can you bring that up and still get your need met? Can you bring up an awareness of what's going on realistically in your relationship in two months? Can you bring up a conversation about condom use, and have that be ongoing? Can you talk about testing?
All those pieces are very significant in risk reduction. It's not just, "Hey, you've done my program. You didn't use condoms at pre; you'll be using condoms at post." It's impossible for me to think that's going to happen. But within what's going on in your life, can we get you to a place where you feel better, where you might be able to negotiate at your job for something extra, so that maybe you don't have to rely on this person for cable money?
That's an awesome point, Monique.
Yeah. I mean, maybe you get another job. Maybe you get job No. 2, and maybe you don't have to negotiate hairdresser money. But let's just take those small steps.
I had an opportunity to work with a bunch of moms, because we do education all over. So I worked with moms once. They were multi-cycle public assistance users -- mom, grandmom, great-grandmom, all in the family -- and had no idea that they could function outside of the home in a 9-to-5 job, because they had never seen that negotiated before.
And we held a facilitator training. We trained these women who live in housing developments to be facilitators of a risk-reduction program. And there was 11-day training, from 9 to 5. And those women got jobs. They hadn't known they could negotiate their life, and leave the house, and be gone from their children, and still do all the stuff they did during the day. So it's the baby steps.
And I'm happy to do one-on-one work with women to get them to the baby steps. The relationship issues are really, really critical when you're talking about negotiation of condom use. But you know what? Sometimes, when you talk to the guys, the guys say, "Hey, she never asked."
And then the connections need to be made that if you actually better people's lives, you give them more options, and that's such a huge, critical point around HIV -- is changing the lives, bettering the lives, of people. Economic stability. You know, dealing with gender oppression. And so then the other piece that I wanted to talk about, too, is that you deal with women and work with women, and that's kind of the major crux of what the organization does. How do you involve men in a conversation about safer sex, prevention and HIV testing?
We do it, but not with the same structure as we do with the women. I think that there's a whole bunch of resources for men. And there are very limited resources for women to just come and be. So my focus is in self-determination and allowing women to just come and be, and from that, learn the lessons that can hopefully reinforce or influence life-saving decisions. When we get with the men, it's just kind of the same type: How can we reduce the rates of HIV? But a lot of the work we do is with the women.
Now, I absolutely agree with you that in the state of New Jersey where, as I said, 33 percent of the people that are infected are women, and where the highest mode of transmission is heterosexual contact, that there's a man involved in there somewhere. But I think that there's a different level of preparation that we can do, and then bring them in later on.
But we are not even doing the conversation piece. And so, there are women that don't have any place to go to talk about what's going on in their relationship honestly, and to say I may be at risk, but I don't know. So you have to get that piece first, and talking and creating an environment where women can talk openly and honestly about the relationship, about what's going on, about risk and risk reduction, and then getting to still feel good about themselves is important.
And that also talks to the fact that not every woman living below the poverty line is being abused, and is forced.
There's that kind of in-between, when you talk about relationships, and you talk about people not wanting to lose the man that they're with. In so many instances, women have been socialized to not be confrontational, to be more timid, let the man be the man. You know, not really asking the kind of questions that we need to ask.
Right. You don't want to upset the apple cart.
Because if you're too much, he's going to leave. With some of the women who come in, has that been an issue, figuring that they're going to lose a man and not bringing it up?
It's just a part of how we're raised. It is part of our socialization. So, yeah, the idea that you ought to be glad you have a man, that's always going to be there. And do whatever it is you can to keep that one man. Because it's like no other man is going to come.
And so that type of thinking keeps us in relationships way after we know that they're over. No one else is going to come. I might as well stay. No one else wants me, anyway.
Or they keep saying there's not a lot of good men out there; I'd better be happy for the one I have. Or, I'm just happy he comes home.
Exactly. I'm happy he comes home. I'm happy he has a job. And he talks to me, like, "Hello," and that's it.
I just want to also be clear for the audience that this isn't every man.
Unh-unh; not at all. Not at all. And it's not every woman, either.
Right. It's not every woman. We're just highlighting something that's really, really important that doesn't get talked about -- this notion of, you should be lucky you have a man.
And the things that we do to put ourselves at risk to keep one.
It's depressing, which leads me to my next question. How do you cope and deal with your own mental health? Because when you do this work, it can really get to you. What are some of the strategies that you use to deal with your own mental health around this?
Yeah, the work is really hard. Working at this agency, and falling in love with some of the women that I have fallen in love with, that are sick and suffering, and just trying to manage their life, is really emotional and hard. And I leave; I leave heavy.
We have an annual conference. We've been doing it for 22 years. November 3 and 4 will be our 23rd conference, here at Rutgers University in New Brunswick. And I spend most of the day on the verge of tears. And then there are just times when I'm not on the verge, I'm just openly crying. Just to see how HIV has devastated some of the women's lives that I've come in contact with over the years is amazing.
And so it gets hard. I have my extraordinarily silly moments, because you have to laugh. Or else I would spend hours crying. I dig 100 percent into the lives of my family. My spouse and my children are my backbone. And so, literally, when I get in the door, I turn off, and I become Mommy and Honey and that's it. And then somewhere after, when the house is quiet, I turn back on again.
But there has to be a physical on/off switch. And sometimes there are just some days I wake up and I say, "I can't do it today." Or, "I'm going to schedule my nearest breakdown for next week. Please don't bother me. I'm going to have a nervous breakdown on Monday and Tuesday." Unfortunately, you have to schedule it, because you have to see what else is on your calendar.
But, yeah. Exercise. Trying to be healthy. And just being aware of when my cup is full, and what that means. I have women I can call.
Is there anything else that you want to leave the audience with about the network; about the work that you do; about one thing they can do to help a sister, or a mother, or a grandmother, in learning about HIV?
The one thing that we can do -- I'll take that one -- the one thing we can do to save the life of a woman is to embrace each other, and protect each other, and talk about HIV. We don't talk about our lives anymore. And just be honest with our life, and ask for help. The information around HIV is readily available. We spend a great deal of time, as we said earlier, trying to look for an out, or, That's not me; I don't have to worry about it.
That's you. And so, worry about it. Put some thought into it. And do your research and educate yourselves, and then educate someone else.
And with that, this interview comes to a close. Thank you, Monique, for speaking with me.
This transcript has been lightly edited for clarity.
Kellee Terrell is the former news editor for TheBody.com and TheBodyPRO.com.