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Stepping Up to HIV Stigma in the U.S. South

An Interview With Monica Johnson -- Part of the Series This Positive Life

January 28, 2014

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How did you start to find other people?

Well, I was actually a part of a Ryan White II service agency. And the director at that time and I were good friends. My son was the first infant client. And so they just wrapped us up; took us in; did a lot for us at that point. And I had met a lot of different people, through groups and through events. And she had sent me to a couple of conferences. Because my son and I, actually: Before he passed, he had gone to an AIDS, Medicine & Miracles retreat with me in Oakland. And we met a lot of other people; found out, you know, you truly are not alone.

Did that, and then when he passed the director had not left then; but the director ended up leaving shortly after that. She should still be there because the director that they have now is not the friendliest, and, you know, really don't want to work with everybody.

When that happened, then I was still trying to be a part of there. Because, basically, the first director, you know, I told her ideas and, "OK, this is what I think." And so I would go to the new director, tell him, "I really think this would be good. This is how we should do it."


"But you're not a ... I'm a BCSW," (a board-certified social worker). They didn't really know that I went to school. I had a degree, too. But the degree didn't matter. Because if you look at our region, we are the largest geographical area in the northeast corner. So we had people that were coming from, like, probably four hours away, to come to a one-hour group. And the reason I'm saying four hours is because a lot of them had to catch a Continental bus. That's when we still had Trailways. So it stopped at every little city. It's a production to get over here. If they brought their kids (if they had kids) the organization didn't want the kids at their building. So for the kids, they had another outside site set up, where they would have to ride the bus in, then get on a city bus, drop their kids off at this location, and then come to this group; then do a reverse to get back. And it's a one-hour group.

I'm like, I wouldn't come to that! That's crazy! And they didn't feed. And everybody who knows me: If you feed me, I usually will show up. So that just would never work for me.

I kept telling him, you know, "Try A, B, and C." And I wasn't a board-certified social worker, so they didn't like my ideas. So it was kind of like, I never wanted to start my own agency. Because I thought it would take away T cells, basically. I was kind of forced to.

How did that start? And what sorts of services did you start with?

When we started, we actually started with just a women's support group. When we first started it was just women.

This is in Columbia, Louisiana?

No. I never did it in Columbia because the service hospital, the hospital where all the services take place, is in Monroe. Monroe is like the hub. So I always wanted to do something that was centrally located, something people would show up to. And I wanted to pick a place that -- everybody knew the name of this agency. They knew it was an AIDS service organization. I didn't want it to be there because, you know, most of the people were people of color. And they worried about stigma.

I had people at that time who, when my story was outed -- because people found out about my son before he died. And so my husband's job told the world for us. And they asked me to leave town. They asked me to get out, all that. The people that knew that, because it was on the news and in the newspaper; they didn't want to be seen with me, because they were afraid -- "If they see me with you, they gonna think" -- you know, at that point.

So, I never wanted it to be where they were afraid to come. First, I actually did it at a church -- because anybody can go to church, for any reason. And then we eventually moved it to the local Charity Hospital, where most people received services. So you could be going to see somebody; you could be going to blood work; any reasons. There are a lot of reasons you can come to the hospital. So we moved it to the hospital.

"I was a volunteer, outside of just being a client. So they had several clients that I would bring food bags to and do stuff for in Columbia. And they said I brought HIV to 'their town.'"

Going back a little bit, before we continue with your work: When folks were asking you to leave town, it sounds as if you stayed where you were.

No, I didn't leave. I stayed. They said, "Well, you brought this to our town." And at this point, I was actually volunteering for the AIDS service organization that was in Monroe. And I had a car so I was going back and forth to Monroe. So I was a volunteer, outside of just being a client.

So they had several clients that I would bring food bags to and do stuff for in Columbia. And they said I brought HIV to "their town." So. I'm like, "OK."

Did you keep on experiencing that kind of backlash? Or when you were like, "I'm not going," were people just, like, "OK," and backed off?

No. We had a lot of stuff that actually happened after it came all the way out: I would go into the drugstore. They would disinfect the counter before I could walk off. I walked up on people talking about me.

And it was OK. You could say what you wanted to say about me. But if you said something about my baby: That's when I had to let the dogs out. Because, again, I don't care. You don't know me; and you really don't know him. So I told a couple of, I guess, influential people, people who thought they were important, or whatever: "I don't care. Like, love, hate me; you will respect me always."

So, you know, if I'm walking down the street, I had people that would cross the street. Cross! Them your steps. Them not my steps. I don't care." So, eventually, a lot of people came around.

How big is the town where you live?

It's about 10,000 people.

What do you think are the biggest needs, as far as HIV care and prevention and access to treatment and testing, in your area?

In our area I would say the biggest need would be more education.

We don't have an ID [infectious disease] doc where I live. So I guess I would want somebody. For a few years, I was going to Washington, D.C. I was in a study and so I was going to D.C. to the doctor. I would say, "I have a doctor's appointment. I'll be back in two days." Because I would fly out for the day; and then they would bring you right back.

And I cannot tell you how many times people who, I would say, were semi-educated; they went, "Why are you going all the way to D.C.?" I'm like, "Because, you know, we don't have a specialist here. And I'm going to see somebody who knows."

"Well, I don't understand. You can just see anybody."

I'm like, "OK. I guess if your heart stopped beating, you're going to go see a gynecologist, right?"

"Well, I never thought about it like that."

"Well, think about it." After a few of those, it got better. But we still don't have an ID doc.

So, education. Continuity of health care. The hospital that we do have, the Charity Hospital, is a teaching school. So those people rotate in, and rotate out. And that's where, I'll probably say, 90 percent of the people that are living with HIV go in the area. And they actually have one doctor who has taken it on, and she is absolutely wonderful. But she is just a medical doctor, an internist -- no specialty. She's just taking care of a lot of people, and she does a wonderful job. I just personally would -- if I had a choice, and I'm having a heart attack, I want to see a cardiologist.

What's the journey been with your organization, HEROES? Based in Columbia; doing your work in Monroe, off-site. When was it founded? And what has its growth, or its history, looked like?

We got our own 501(c)(3) in 1999. But we were incorporated. We started about three, four years prior to that. We just had a fiduciary agency the first three, four years. And then I got a contract from the Office on Women's Health; actually, part of the contract was built in, where we had a mentor organization. We were the mentee; they were the mentors. And we had to put in our proposal what were our biggest needs, and what did we want to accomplish within -- it was a year, a 12-month thing. And in our 12 months, one of the things we said: We wanted our own 501(c)(3). Because, of course, we were giving money to the other agency for writing a check that we could write ourselves. And so they helped us get our 501(c)(3), April 1999. So we have got our own 501(c)(3).

Two years prior to that, my adopted son was getting ready to start elementary school. And there's no after-school activities or nothing for the little kids to do, but just hang out. And that's what most of them do. And even when they become grown, the big kids didn't know that, you know, at a certain point, you got to let it go. Big kids hanging out with the little kids. You know, a lot of drugs, a lot of teen pregnancy, a lot of stuff going on. So I was trying to figure out what I could do to keep my son off the street; so I started an after-school program, because I wanted to make sure he was off the street.

In time it grew faster. And one of my friends who works for the Office on Women's Health told me early on; she said, "Always give them what they want to get what you want out of it." And everything that we did, we provided HIV education and prevention education. So we started an after-school program, you know, that did academic enrichment, personal and social skills, health, sexual health.

All of the parents went through an orientation. We told the parents what we were going to talk about. It was not an abstinence base, at all; it was "you got the facts." So we gave it to 'em like it was. We had about 70 kids that came to our after-school program. You know, we had a waiting list for our after-school program.

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This article was provided by TheBody. It is a part of the publication This Positive Life.


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