Paige Rawl was 12 years old when she told her best friend that she has HIV. She’s had the virus since birth — her mother unknowingly contracted it from her father, who eventually left the family.
"I didn’t really fully understand what exactly I was telling my friend at the time," Rawl, now a college student, told me. "I didn’t really understand what having this disease could mean until after I started getting the reactions from other people."
Those reactions were devastating. Paige’s admission quickly spread through her Indianapolis middle school. Rawl’s schoolmates — even her friends — responded by mocking and ostracizing her. They refused to use the water fountain after her — afraid they’d get the disease, too. She was beat up and called names. Rawl went to the school counselor for help. Her advice to Rawl? Tell her friends that she didn’t have HIV after all.
More than one in three Americans holds at least one wrong belief about HIV transmissions
"For me, that was bad," Rawl said. "This was someone I thought I could go to."
The last straw came when a soccer coach at the school asked Rawl about her condition in front of the entire team.
"My mom confronted my coach," Rawl said. "The coach made a joke to my mom that the team could use my HIV status to our advantage, because the players on the other team would be scared to touch me, and I could score goals."
Rawl withdrew from school and was homeschooled until college.
"It was really hard, because I was so involved. I did show choir, soccer, and all that," she said. "So homeschooling for me was really hard, but it was something I had to do because the bullying got so bad."
Misconceptions about HIV remain
Rawl’s experiences aren’t unique — many of the 1.2 million people living with HIV in America face similar cruelty and misunderstanding from their communities. I wanted to learn more about their experiences, so in 2014, I contacted advocacy groups to connect with people living with the disease. I interviewed eight HIV-positive people, with a range of ages, sexual orientations, races, and backgrounds. These interviews, of course, don’t represent everyone living with HIV or AIDS. But they provide a glimpse into just how harmful the persistent misconceptions around the disease can be, even for some of the most optimistic people living with HIV.
There was a consistent theme in these interviews. After people were diagnosed, they quickly learned that proper medication can make the disease less deadly and more difficult to transmit. Indeed, HIV isn’t the death sentence it was in the 1980s and early 1990s. The age-adjusted death rate among people diagnosed with HIV and AIDS dropped by 93 percent between 1987 and 2010, according to the Centers for Disease Control and Prevention. A large part of that, the CDC explains, is attributable to the development of highly effective antiretroviral medication.
The big problem for these HIV-positive people instead came through the stigma attached to the disease. Three decades after the rise of HIV terrorized the world, many misunderstandings attached to the disease remain — from misconceptions about whom it affects to confusion about how it’s actually transmitted.
More than one in three Americans, a Kaiser Family Foundation survey found, hold at least one wrong belief about HIV transmissions. About 27 percent don't know it can't be spread by sharing a drinking glass, 17 percent don't know it can't be transmitted by touching a toilet seat, and 11 percent don't know it can't be caught by swimming in a pool with someone who is HIV positive.
"When people see me, they’re often surprised when I tell them I have HIV," said Danny Harris, from Little Rock, Arkansas. "You can tell they’re taken aback, because we still live in a state here that thinks you can get it from kissing someone or sitting on a toilet seat."
These misunderstandings could affect public health
The stigma surrounding HIV makes life more challenging for people with the disease. The people I interviewed described being afraid to tell their families about their status, and concerns about how the disease affects their friendships and romantic relationships. The stigma also poses public health risks: Advocates and researchers are concerned that these misunderstandings could cause the disease to spread further.
"There’s issues around stigma and homophobia," said Amy Lansky, an HIV researcher at the CDC. "That might deter some young men from seeking HIV prevention services and testing."
A 2009 survey found that one in three people living with HIV still experiences high levels of discrimination due to the disease. Worse, those reporting the highest levels of stigma also report poor access to medical care. The stigma, in other words, correlates with less prevention and care for HIV.
The stigma also appears to make doctors wary of recommending HIV testing. In a 2011 survey, black doctors, who are more active in black communities in which HIV is more prevalent, said three of five barriers to offering routine testing for HIV are related to social stigma. Physicians said they're particularly concerned that patients may perceive a test recommendation as accusatory or judgmental.
"Living in Arkansas, being HIV positive communicates a lot of things. It communicates that he’s gay, he’s nasty, and he’s having random sex with all kinds of different people."
This problem can extend further, after someone is tested for HIV. Jimmy Walker, from Little Rock, said his doctor in Atlanta, where he lived at the time, offered little support after he was diagnosed.
"The doctor came that morning and said he had run a full gamut of tests to see if I contracted any kinds of diseases, and he told me all of those came back fine — but my HIV test came back positive," Walker said. "Then he walked out of the room and left me there."
Several of the people I interviewed also said that their doctors didn’t give them adequate information after they were diagnosed. They instead resorted to friends, peers, and the internet. For some of the subjects, talking about HIV is so stigmatized — even treated as a joke — that people can’t discuss where to get help.
Tommy Luckett, from Little Rock, said she wasn’t aware of the Ryan White HIV/AIDS Program, a federal program that helps low-income people obtain antiretroviral medication, until she chatted with a Tennessee-based friend online.
"I felt fear, like I was going to die," she said. "I didn’t know what I would be able to do, because I knew that I didn’t have the money to pay for any medication. I had already heard about how expensive the medicines were."
Luckett’s friend suggested that if HIV/AIDS support services exist in Tennessee, they surely exist in Arkansas as well. That led Luckett to the Ryan White Program in Arkansas, which helped pay for her treatments from then on. But without that one friend online, Luckett could have been left helpless — largely because the mere discussion of HIV can be so taboo.
Advocates and officials work to fight the stigma
The discrimination people with HIV face is compounded by a troubling reality: More and more young gay and bisexual men are contracting HIV.
A 2014 CDC study found that among all groups, annual HIV diagnoses between 2001 and 2011 increased the most among 13- to 24-year-old boys and men who have sex with men. Previous CDC studies also found a 22 percent increase in new annual HIV infections between 2008 and 2010 among the same group, and youth ages 13 to 24 accounted for more than one in four new HIV infections in the US in 2010.
For advocates, part of tackling this alarming trend is dismantling the stigma attached to HIV.
Part of that is undoing anti-gay attitudes attached to the disease, which came about because HIV is more common among gay and bisexual communities. These attitudes can make it more difficult for gay and bisexual men with the disease to get proper care. A 2011 review of the research from the National Center of HIV found gay and bisexual men can delay getting treatment because they’re uncomfortable with their sexuality and are cautious of exposing themselves to any potential discrimination from health care providers.
Danny Harris confronted these attitudes in Little Rock. "Living in Arkansas, being HIV-positive communicates a lot of things," he said. "It communicates that he’s gay, he’s nasty, and he’s having random sex with all kinds of different people."
Another part of the stigma is that people only get HIV due to careless behavior and somehow deserve the disease. But Rawl has lived with HIV since birth. One of the men I interviewed was raped and contracted the disease. Many of the people I talked to were monogamous at the time they caught HIV, but their partners were either disloyal or didn’t know they were HIV-positive.
By breaking down these barriers, advocates and officials hope to open up discussion about HIV without the stigma attached to it. That could open more people to the idea that they might have the disease and should get tested for it, which can be a major hurdle — particularly for younger populations. A 2012 CDC survey of high school students found nearly 60 percent of young people with HIV are unaware of their infection, which obviously makes them much less likely to take proper medical precautions that would make the disease less transmittable and deadly.
Other times advocates take on the idea that the disease is still as fatal as it once was, which might scare people away from talking about the disease or thinking that they could have it. Harris travels across Arkansas to help people living with HIV. At first, he struggled about whether he should come out as HIV-positive. "After a while, I began to think it through and decided it was better that it be known," he said. "I could demonstrate with my own testimony and my own life that HIV doesn’t win unless you give it the victory."
Advocates and officials hope to open up discussion about HIV without the stigma attached to it
To some degree, it seems this advocacy work has succeeded since the 1990s. The CDC’s Lansky points out that overall diagnoses and infections are down by one-third between 2001 and 2011, but most of those improvements were among injection drug users and heterosexual men and women. She said it’s now a matter of doubling down on efforts and building on progress made over the past few decades, particularly by targeting seriously at-risk groups like young, black, gay, and bisexual men.
For the CDC and advocacy groups, breaking the stigma and starting a more open conversation are the first steps. Then people can be guided to testing, told about drugs like Truvada that help prevent the spread of infections, get educated on the importance of other protection like condoms, and put on medication that reduces HIV viral loads and, as a result, reduces the disease’s deadliness and ability to spread.
Knowing first-hand how bad the misconceptions about HIV can get, Rawl has made it her life's calling to do the advocacy work, dissolve those stigmas, and start honest conversations about the disease. She travels the country to tell her story and what she’s overcome, and she hopes her memoir, Positive, which came out in August 2014, will help spread her story further. The education effort can get personal at times: Rawl sometimes has to convince parents of boyfriends that the disease isn’t as dangerous as it used to be.
"I think this generation, our parents, grew up when the disease came out and scared people," she said. "So they have a lot of that on the back of their minds, and they need more education on what it’s like now."
German Lopez:You realized that you’re HIV-positive at 12. What was it like for that to happen at such a young age?
Paige Rawl:When I first found out, I didn’t really understand what the disease really meant or that there’s a stigma out there. When I told my best friend at the time, it spread throughout the entire middle school and I started being bullied. I really started to understand the disease, and understand that there’s a stigma out there and some people are never going to accept me for it. After everything I went through, though, I realized that having HIV shouldn’t define me.
German Lopez:When a lot of people find out, they immediately think their lives are over. Were you too young to react in that way?
Paige Rawl:I was too young. I thought that being HIV-positive was like having asthma. I didn’t really fully understand what exactly I was telling my friend at the time. I didn’t really understand what having this disease could mean until after I started getting the reactions from other people.
German Lopez:Is the deadly aspect something you think about today?
Paige Rawl:Today, I just look at it like it’s any other disease. I just take this one pill a day. I feel like HIV is one of the diseases that is a lot easier to live with now. It’s easier than some of the other diseases that are out there.
German Lopez:So for you it’s more a chronic illness than a terminal illness.
German Lopez:You mentioned how coming out to your friends caused your status to spread through your school. Is that reaction — the bullying — something that you’ve seen a lot in your life?
Paige Rawl:Yeah. After coming out, I lost a lot of friends because of it. I was frequently beat up. I had a nickname that I was given. It was really hard for me. I was surprised at how people were treating me over something I was born with.
I believe everything happens for a reason, so all of it gave me a reason to go out and educate people so other people wouldn’t have to go through what I went through.
German Lopez:How did your friends explain those kinds of reactions to you? They were young at the time, but it seems shocking they just immediately turned on you and started bullying you.
Paige Rawl:They just didn’t want to be around me, they didn’t want to hang out with me, and they were telling other kids not to drink after me because they’ll catch the disease. I think it was a lack of education; they just didn’t understand or know how to treat or be around someone who is HIV-positive.
There’s so many negative things out there about the disease. I think they just took those, and that’s what they ran with.
German Lopez:How did school officials handle all of this? Were they aware of it?
Paige Rawl:Once I went to the school counselor. All she really told me is that I could deny I’m HIV-positive. For me, that was bad. This was someone I thought I could go to, but I didn’t really receive the advice I thought I should be given.
They thought I was just having problems. The kids who were making fun of me were supposed to be the good kids, with good grades. So the school counselor told me that they couldn’t suspend one bully because she’s a straight-A student. But the thing is I was a straight-A student until I started going through all the bullying.
German Lopez:So what did you end up doing? Did you change schools, or did you start getting homeschooled?
Paige Rawl:After going to the counselor numerous times and after everything I went through, in my eighth grade year I withdrew from the school. I was homeschooled. It was really hard, because I was so involved. I did show choir, soccer, and all that. So homeschooling for me was really hard, but it was something I had to do because the bullying got so bad.
German Lopez:Did your grades noticeably drop during the bullying?
Paige Rawl:Yeah. During my seventh grade year, I started having stress-induced seizures for nine months because of the bullying. So I missed a lot of school, and my grades started going down noticeably.
German Lopez:How did your parents react to all of this?
Paige Rawl:My mom was always there for me. But I didn’t fill her in with everything that was going on at school. I never told her I was going to tell my best friend; it just happened. So she didn’t even know I was having these problems until she was called down to my school. But I know it was hard for my mom through all the seizures and failing to get in touch with the school. She was just trying to find a way to help me through it.
But she was there for me. I was able to talk to her. Once I was homeschooled, she actually stopped working because she had to be home with me everyday.
German Lopez:How did your mom’s boyfriend deal with all of this?
Paige Rawl:He was supportive. Any time I had to go to the hospital, he was there.
Him and my mom are very protective of me. They were always making sure that nothing bad is going to happen to me. They were both very supportive and protective.
German Lopez:In the aftermath of all of this, do you have new friends to fall back on?
Paige Rawl:I just finished my freshman year at Ball State University, and I have friends that I hang out with all the time. I’m back to getting my straight A’s. So everything for me is going well. I’m always going to have the effects of what I went through, but it helps to have this support system.
German Lopez:Have you told your current friends about your status? How did they react?
Paige Rawl:I’m actually very open about my HIV status. I speak all across the country to schools and different events. So it’s kind of hard for me to find a friend that doesn’t know about it. It’d be really surprising if I did, especially since I’ve spoken at my college about my HIV status and what I went through.
I like to get my HIV status, whether it’s friends or dating, out right in the beginning. That way if they have a problem, it saves me the trouble in the long-run.
German Lopez:Do people react positively nowadays?
Paige Rawl:Usually, they do. I’ve had a couple problems in the past year, but I think it was just guys being ignorant. It wasn’t really people that I considered my friends.
German Lopez:Not to dwell on the negative, but I’m curious why those people still stigmatize you. What do you think?
Paige Rawl:I don’t know if it’s a lack of education or ignorance or people just wanting to be mean.
One time, walking back to my dorm, I was called "the HIV girl" by a group of guys. For me, it was hard. I was like, I’m in college. They’re adults now, and there shouldn’t be any of that going on. It’s surprising that at that old they’re still trying to say that I’m different from everybody else.
German Lopez:If they see it as a serious disease, then they’re making fun of a sick person. To me, that seems so bizarre and backwards.
Paige Rawl:Yeah. It’s very weird. There’s just a lot of ignorance out there.
German Lopez:Has your status had an effect on your romantic relationships?
Paige Rawl:It’s never really been the guy. It’s just once they tell their parents that they’re dating someone that’s HIV-positive, their parents start to get anxious and nervous and not okay with it.
German Lopez:Do the parents start intervening in the relationship?
Paige Rawl:Yeah. They ask a lot of questions. They want to make sure that everything is okay.
I think this generation, our parents, grew up when the disease came out and scared people. So they have a lot of that on the back of their minds, and they need more education on what it’s like now.
German Lopez:When you describe to them how it works now, how do they react?
Paige Rawl:They’re more surprised that nowadays it can be that controlled. Once I go and explain how the disease is nowadays, how I take one pill a day, and how my viral load is undetectable, they loosen up a little and start to understand this isn’t such a big deal.
German Lopez:Have there been any cases in which the parents refuse to change their minds about it?
Paige Rawl:I luckily haven’t had a situation like that.
German Lopez:Since you’re publicly open about it, I’m curious if it’s affected other aspects of your life. Has it affected you in any social settings, like church, some clubs you’re involved in, or sports?
Paige Rawl:During my eighth-grade year, there was a moment — my last straw before I left the school — when my soccer coach approached me and said, "By the way, I heard you have AIDS. Is that true?" I told him no, because there’s a difference between HIV and AIDS. But I was so young, and the fact she asked me in front of other players made it terrible.
My mom confronted my coach. The coach made a joke to my mom that the team could use my HIV status to our advantage, because the players on the other team would be scared to touch me, and I could score goals.
That’s when I decided this isn’t where I should be going to school.
German Lopez:That sounds horrible. Was that the last bad experience in that kind of social setting?
Paige Rawl:I’ve always had people say I can’t do something because I’m HIV-positive. But when someone tells me that I can’t do something because of my HIV status, it just makes me try to do that and more. In a way, it’s made me want to be even stronger.
German Lopez:Your mom is HIV-positive, too. Do you think that helped you cope with it through all of these issues?
Paige Rawl:It has helped. It’s better to have someone who went through what I’m going through. I wrote a memoir that’s coming out this August, and my mom was there for all of it. Not only is she dealing with my HIV journey, she also has her own journey.
German Lopez:Tell me about your memoir.
Paige Rawl:It’s titled Positive. It’s coming out August 26. I’ve always wanted to write a book sharing my story. It tells my story from when my mom contracted the disease to everything I’m doing now. I hope it helps people who have been a victim of bullying because of their HIV status or any other reason. I try to show them and help them and let them know that it’s okay to ask for help.
"I knew if I gave in to suicidal thoughts, I’d be letting down the people that love me."
German Lopez:How did you feel the moment you found out you’re HIV-positive?
VanDerek Foster:I was at my doctor’s office. I had been going for two or three weeks to figure out what was wrong, because I had been having some problems.
It came to a point where I couldn’t work anymore. My job at the time — at Publix — depended on me being on my feet and walking around and helping people, and I couldn’t walk around. I decided I can’t work anymore, and I had to leave.
Back at the doctor, he called me in to give me my test results. He had asked me if I thought I could have AIDS, and I told him no. He brought me in the next week, and he’s like, "Your test results came back positive." I took a deep breath and said, "Okay."
I just accepted it in my head. Him asking me if I think I could have AIDS set me up so I could be okay with it. Well, I thought I was okay with it. I didn’t feel numb, depressed, or sad about it.
German Lopez:A few people have told me they were accepting or optimistic almost from the start. Did you approach your diagnosis in the same way?
VanDerek Foster:At first I did. But after having it settle for a while, I think my optimism was a front so people didn’t get sad around me.
When I told people, the first thing I told them was, "I’m going to tell you something, and the last thing I want you to do is cry, because that would not help me." And only one person broke down and cried.
But I had my moment when I cried. It didn’t last long, though.
German Lopez:How long after you found out did that happen?
VanDerek Foster:It was the following Saturday.
I cried because I knew I wasn’t going through it alone. My mom was here. Me being sick was just more stress on her. That thought made me break down, because the last thing I want to do is put more stress on my mom. I didn’t want to do that to her.
German Lopez:How did your mom react to all of this?
VanDerek Foster:She reacted surprisingly well. She was at work when I told her, so I think she couldn’t break down and cry. But even after then, I haven’t seen my mom cry about it.
She’s taken me to all of my appointments. She’s tried to go in with me and talk to the doctor, but I have this thing inside the doctor’s office.
German Lopez:Would you say she’s been supportive then?
German Lopez:How about other family members? Have you told them?
VanDerek Foster:Yes. I’d say that about 65 percent of my family is very supportive.
German Lopez:Is there a certain segment of your family that isn’t supportive, like your dad’s side?
VanDerek Foster:Yes, it’s my dad’s side, including my sister and probably my cousins.
German Lopez:Why do you feel that way?
VanDerek Foster:Well, I haven’t told them. But I suspect they would react negatively.
Not too long ago I told my dad that I’m gay, and he had a negative reaction to it. I told him, and he just walked away. That was the last time I spoke with him — in 2012. So I can only imagine how he would respond to this. I probably would be better off not telling him.
German Lopez:So do you plan to ever tell him?
VanDerek Foster:Not now, at least. Probably later on. Maybe when I have a clearer understanding of how he would react to it.
German Lopez:How about your friends? Have you told them?
VanDerek Foster:I have three best friends. One of them, who I feel fortunate to have in my life, is also HIV-positive. He’s been very supportive and helpful. I told my other friends as well, and they’ve also been supportive. They all check on me and make sure I’m mentally and physically okay.
I lost 50 pounds, so I had to go through a wardrobe change. Some of my friends actually bought me new clothes and made sure I’m okay financially as well.
German Lopez:Did your friend who’s also HIV-positive help you through the situation?
VanDerek Foster:He definitely did. I probably wouldn’t have been so understanding of my situation had I not been so understanding of his. I would have broken down if he had not been here to help me.
German Lopez:I know a lot of people react negatively at first because they assume they’re going to die. Do you think your friend shielded you from that reaction?
VanDerek Foster:He definitely did, because he was one of the first people I told. Initially he told me, "Be calm. I’m here for you." After an hour of talking, he began asking me what I’m going to do with medication. He told me about the different medicines that are available. It was just a great talk. So he helped me understand what was really going on.
German Lopez:Has your diagnosis affected your romantic relationships?
VanDerek Foster:In my most recent relationship, I told him about it right after I was diagnosed. We tried to make it work, but I don’t think he understood what was going on with me.
I was hospitalized for pneumonia a week after I got my results. While I was in the hospital, he called me and told me he felt abandoned. It was a slap in the face. How did he feel abandoned when I was at the hospital going through this? He thought I should make a greater effort to be with him. So I ended up calling it off.
German Lopez:How sick were you when he told you that?
VanDerek Foster:I had been sick for about a week. I went in on a Tuesday. My cousin had come over, and she asked me if I was okay. I said no, but I couldn’t take my temperature because my thermometer was broken. So she told me to go to the doctor.
My fever was 102 or 103 degrees Fahrenheit. The doctors immediately rushed me in. I had trouble breathing because I also have asthma, and I had problems keeping down food. I was there for about three days, until my temperature dropped.
In the end, I found out I was no longer HIV-positive. I had AIDS, because my white blood cell count was so low.
German Lopez:How did you feel at that point?
VanDerek Foster:It changed the frame of the issue for me. But, at the time, I had that same understanding reaction I had back at the doctor’s office. I’ve never been the type to cry, because I hate the type of vulnerability it causes.
German Lopez:Through all of this, the person you were with at the time told you he felt abandoned. How did you feel about that?
VanDerek Foster:It was ridiculous at the time. That’s probably when I felt the most emotion. He was also in the hospital for his diabetes, but I couldn’t get up at the time and go see him.
German Lopez:Have you been any relationships after him?
VanDerek Foster:I’m talking to someone now. He knows I’m HIV-positive. He says he’s okay with it, but I’m a believer in actions speak louder than words. We haven’t even had sex yet. So I’m waiting to see where we are at once we’re comfortable enough to have sex with each other.
German Lopez:Have you told any other communities you participate in, like church or theater group?
VanDerek Foster:I haven’t been back to church since Easter. That was before I had been diagnosed, but I had lost a lot of weight. One of the people jokingly asked if I had AIDS. After that, I decided I’m not going back.
When I found out about my status, that joke made me feel worse about the situation.
German Lopez:Have you found any supportive communities?
VanDerek Foster:There’s this group here called the ELITE Project. They’re like a big family for me. They’re a group with AIDS Alabama, and I go to them regularly for counseling. It’s somewhere I can get away from home, and where gay youth can just be ourselves.
German Lopez:Have HIV/AIDS affected your job at all?
VanDerek Foster:I’m self-employed at the moment. I do graphic design and photography.
It has affected me. I can’t stand up for more than 30 minutes, because my HIV works to make my asthma worse. So if I stand up for that long for my photography, I’ll fall back.
German Lopez:How have you dealt with that?
VanDerek Foster:It’s hard. I used to be active. Now, I’m just at home or always sitting. I can’t do too much running. It really has affected how I live my day-to-day life.
German Lopez:Do you expect that to get better over time?
VanDerek Foster:My doctors said it could go either way. It’s a matter of time to see if I get better.
German Lopez:I assume that worries you a lot.
VanDerek Foster:Kind of. I could really benefit from having a job if I don’t get disability.
German Lopez:How are you paying for your treatments right now?
VanDerek Foster:My mom’s insurance.
German Lopez:So are you looking for another job?
VanDerek Foster:I’m looking for another job as well as doing my design. I’d like to work at a call center, as a receptionist, or somewhere else I could sit.
German Lopez:A big aspect of HIV is the stigma that follows it. Have you run into problems with that?
VanDerek Foster:On social media, I’ve had someone attack me for having HIV. It’s very disheartening. It was a person I considered a friend. He also made a joke about someone looking like they belong on an HIV-positive dating website. It made me wonder what he would say about me behind my back.
German Lopez:Do those kind of reactions make it harder for you to be open about your status?
VanDerek Foster:No, it doesn’t. I can’t do anything about another person’s ignorance, so I tend to let it go and move on from it.
German Lopez:Given that HIV diagnoses are rising among young gay men, what would you say to someone who was just diagnosed?
VanDerek Foster:Whatever you do, don’t lose who you are. It’s easy to for you to just lose yourself and give in, but you have to find something to hold onto. With me, it was my friends. I knew if I gave in to suicidal thoughts, I’d be letting down the people that love me. So I’m trying to hold on to all of those things.
"People are ignorant and not accepting of it. They think you have a plague they can get by touching you or whatever."
German Lopez:Walk me through when you were first diagnosed with HIV — where you were, how it felt.
Leslie:I went to my annual test and mammogram. I did like I normally do my yearly. And when the results came back, the doctor had called me into the office. So when I went to the office, that’s when he pulled me into his office and he told me that my blood work came back positive for HIV.
I was like, "Are you sure you got the right person? Do it again." So he redid it, and the same results came back. I was just devastated. I couldn’t believe that it actually happened to me. I thought I was being safe. The only person I was being intimate with, we had used protection.
I just felt like killing myself, because I know people are ignorant and not accepting of it. They think you have a plague they can get by touching you or whatever. It was like, my life is over, it’s a done deal.
German Lopez:A lot of the people I’ve talked to have worried about the stigma mainly because of how it reflects on their sexuality. As a straight person, did you feel a stigma as well?
Leslie:I just see it as being across the board. Nobody is a stranger or immune to the stigma. That’s about as much thought as I’ve given it.
German Lopez:How open are you about being HIV-positive?
Leslie:I disclosed to my immediate family, because I got sick back in 2003 or 2004. I got really ill, and the doctors weren’t expecting me to survive, so it was disclosed then.
German Lopez:How did your family react?
Leslie:My kids were mad. They felt that my husband at the time had given it to me, but that wasn’t the person that actually gave it to me. My sisters, one of them basically lost it. My mom was pretty much the same.
German Lopez:Do you know the person who gave it to you, and do you know if he was aware that he was HIV-positive?
Leslie:I haven’t talked to that person. I don’t know if he knew or not. But I mean, why do me like this? I had been with this man since my little girl was eight months. I felt betrayed.
German Lopez:Was your mom upset?
Leslie:She was hurt. Like I said, the whole family was hurt because it started to touch home. Everything you instill in your child, you want them to make the right decisions, and things just happen.
German Lopez:Has the stigma been a problem in your family at all?
Leslie:When I went to visit my aunt and cousins in Atlanta, we sat down and talked. I explained to them, "You can touch me, you can hug me, I’m still the same person. The only thing different is I have to take medication, I have to take care of myself, and my health comes first. But I’m still your cousin, I’m still that same person. I haven’t changed." I had to let them know that you can’t tell someone has HIV just by looking at them.
German Lopez:Do any of your friends know?
Leslie:No. I have friends, but I don’t feel I need to disclose that information to them, because I’ve looked at how others have disclosed their HIV status and how they’ve been treated. So I’ve told my family, and nobody else knows.
German Lopez:Are you worried your friends and community will reject you?
Leslie:Yes, because Arkansas is really small. Ignorance is bliss.
In the end, I do have kids, so if someone finds out here, what kind of retaliation would be done to my children? I look at it from that aspect, because I do have grandkids as well. It’s just safe with my immediate family, and I’m comfortable with that. I don’t want anyone else to know outside of my position.
German Lopez:What have you seen with other people coming out that’s made you so worried?
Leslie:My sister’s sister-in-law died from AIDS. I saw how her mother treated her, and that was really hurtful. I have another friend that’s HIV-positive, and I’ve seen how his family does him. I don’t want to be treated like that. Like my doctor said, I’ll probably outlive some of these people that don’t have HIV/AIDS. But it goes back to us being in a small state, people run their mouths, and not everyone is accepting.
German Lopez:So what kind of effect has this had on your relationships? What relationships were you in since you were diagnosed?
Leslie:I was married in 2002, and I got divorced in 2005 or 2006. That’s it.
I just don’t let any male friend get close enough to me to be in a serious relationship, just because of my status. If you start divulging certain information, how would that person take it and use it against you? So I just kind of shut down with the relationship issues. I just talk with others just to keep my mind off of it.
German Lopez:Did you disclose to your husband, and did you guys take precautions?
Leslie:He found out when I got sick.
German Lopez:So he didn’t know until then?
German Lopez:Did you feel bad about that?
Leslie:Yes and no. I mean, we were using condoms. After he found out, my mom told him to get tested. So I don’t know if he did or he didn’t — I don’t even know how to get in contact with him now. There was a lot of stuff that led up to our divorce, and we had to get a restraining order. It was just really hard.
German Lopez:Another aspect of living with HIV is whether it could affect you at your workplace. Do you feel that’s impacted your job at all?
Leslie:I work at a stressful job. I have to be mindful of how it affects my immune system. So I try not to stress as much, but it’s hard. I am undetectable, but the stress can cause me to get sick.
German Lopez:Have you ever gotten sick and had to call off work because of stress?
German Lopez:So would you say it’s affected your work at all?
Leslie:No, it hasn’t affected my work. My meds recently got switched, and the doctors did that on a Friday to see how they would work through the weekend. I was a little nauseous, but other than that I was able to go back to work.
German Lopez:Given your concerns about the stigma, what would you say to anyone thinking about disclosing their status?
Leslie:Make sure that that is something they’ve thought through. Once that’s out there, there’s no way to take it back. Especially if you have kids, you have to really think about that. Just be mindful that once it’s out there and people know it, are they going to be compassionate or are they going to look at you like you have a plague?
German Lopez:You’ve mentioned your kids a few times. Is that the biggest fear with the stigma for you? What do you think would happen to them if you said something?
Leslie:I just think everyone’s going to treat them bad. Saying things like, "Oh, her momma’s got the package." I don’t even want to put my children through that. That’s why I don’t tell people.
German Lopez:Do you think it would feel good, personally, to come out to people?
Leslie:I would like to be able to tell people. Then I could be a good spokesperson for the issue, because I am a people person. But not everyone is understanding.
I kind of talk to a few ladies that I’ve crossed that I see are promiscuous, and I let them know that HIV/AIDS is real, it don’t care who you have sex with, and this is something you can have for the rest of your life.
German Lopez:It sounds like it still weighs you down every day.
Leslie:It does. I ask myself everyday, "Why me?" I wasn’t one of those people they talk about that had sex with everybody and anybody. I was just having sex with one person.
But I deal with the cards that I’m dealt. I try to stay upbeat and smile.
"I could demonstrate with my own testimony and my own life that HIV doesn’t win unless you give it the victory."
German Lopez:What was it like when you found out you were HIV-positive? How did you feel?
Danny Harris:My infection happened due to an act of violence. When I started getting sick after the event, I kind of suspected that’s what was going on. I had the doctor give me the diagnosis.
It was January when I was attacked, and in June I was sick, and I had the diagnosis by the end of June.
My initial feeling was a numbness. I didn’t know what to think, because I didn’t have any type of education on it. I didn’t know anything about it. I wasn’t prepared to deal with HIV. I just had a feeling of being lost.
Even after seeing the doctor on that first day, I was left without any type of resource or information to help me to deal with it.
German Lopez:Especially given how your infection came through an act of violence, I imagine that must have made the whole event feel much, much worse.
Danny Harris:It took a while, because I was dealing with those types of things. There had been years with just battling within me: Are you gay? Are you straight? Are you gay? Are you straight? I never really fit in.
When I was physically attacked, I knew it was wrong, and I hated that it happened, but at first there was a lot of confusion with how to deal with any of it.
Since I didn’t really have anyone to talk to, it just sat there in a state of confusion for, I’d say, at least year.
German Lopez:How long did it take to start talking to people?
Danny Harris:By the end of that year, there was a support group that I was recommended to. We could talk to each other on an intellectual level. They helped me find my way through that confusion and helped me to make a solid base underneath all of it, so I could deal with all of the above.
I would say it was within two years before I started talking to a lot of people.
German Lopez:That’s a long time. How did you feel during those two years, keeping it secret?
Danny Harris:I felt insignificant. I felt there was no purpose for me in life anymore. Everything that was near and dear to me was no longer available to me. I was trying to figure out what the rest of life was going to be like.
I had a particularly bad experience with the Department of Health that led me to believe that everybody would now know about my status. So not knowing what it means or what it represents except for death, it was just not something I could sort through.
German Lopez:Once you started treatment, how did that change your perspective?
Danny Harris:Through the conversations with this man who helped me at the support group, he helped me understand what it meant. When I saw my numbers begin to change, I began to feel better. My perspective began to change, and I began to understand that this was something I could work with, deal with, manage, and actually overcome.
German Lopez:Once you started feeling safer with the disease, did you start coming out to your family?
Danny Harris:I waited until 2010. I have four children, and I have several brothers and sisters. We’re all very close, and we’ve always been close. We have a little group on Facebook that’s just for us — a private room. I went on Facebook and made the announcement to everybody, so I could make sure that everybody got it at the same time and got the same message.
By then, I was completely understanding of what was going on, I knew where I was at, and I knew what I could accomplish. So I was willing to make that disclosure to everybody.
One of my children had a little problem. He was afraid that I was dying. It’s taken a while to help him understand that it doesn’t mean death anymore.
German Lopez:Were your parents around for this?
Danny Harris:No. My parents had already passed away.
German Lopez:What was the general reaction from your family? Was it supportive? Was it what you expected?
Danny Harris:I’ve had nothing but support from my family. They don’t make an issue of the HIV, nor do I. I’m just Danny, and I’m living my life, they’re living their lives, and when we get together we enjoy ourselves. They’re not timid with touch or hug; they let me play with their kids; and they let me play football. There’s no hesitancy.
But my family is all professionals. There’s a minister, a schoolteacher. They’re all professionals. They have a little bit of background to know that it’s not something to be afraid of.
German Lopez:Has your family always been supportive through these kind of tough issues?
German Lopez:How about your friends? How did they react to it, if you told them?
Danny Harris:At first, I was more afraid of disclosing to my friends and my peers and the people I worked with than I was with my family. I didn’t ever want to be perceived as a victim or that I was something less than everyone else. Since 2010, I’ve actually been working in the HIV outreach field, and I was still hesitant to disclose my status for fear of those very reasons.
After a while, I began to think it through and decided it was better that it be known. I could demonstrate with my own testimony and my own life that HIV doesn’t win unless you give it the victory.
German Lopez:So did you take longer to tell your friends then?
Danny Harris:I would say it took until 2011 for me to become more open with the people I work with. At that point, I took an outreach position, so I was traveling the state working with support groups, doing HIV testing, and working with people who didn’t know their status or were finding out their status. At that point, I was a perfect source for them. They could look at me and see I was nothing but Danny. There’s nothing there that they could fear.
German Lopez:So how did your friends and coworkers react when they found out?
Danny Harris:I’ve not had anyone who’s been negative about it. But I work in the HIV field. So for somebody to be negative to that, it would have been hypocritical toward what we do.
German Lopez:How about your romantic relationships? What kind of effect has this had since you found out?
Danny Harris:At first, dealing with the Department of Health, I was led to believe that I was not allowed to have sex anymore. The doctor never would broach that subject, so I always felt that it was wrong for me to even think about it. What if I infected someone else?
Since that time, I’ve had one relationship. I was with a gentleman who was also HIV-positive, and he was a long-term survivor.
At this point, I only date other positives. We discuss it going in, and it’s not an issue. Since people know who I am and what I do around the area, they already know going in.
German Lopez:Are you still nervous about dating someone who’s HIV-negative?
Danny Harris:Yes. If I meet someone I really like, I always worry about that. Do they know? How are they going to react? That’s why I generally try to date positives and tend to make it easier for myself.
German Lopez:Have you come out to a bigger community, like a church or theater group?
Danny Harris:I was a member of a Methodist church here in Little Rock. I was actually facilitating one of the Sunday morning classes, and the subject I was teaching worked well with my personal story, and I took the opportunity to just share with the class. There were about 30 people in the room, most of them older, and I could see in their faces that about half them dealt with it okay and about half of them did not. A couple of them discontinued coming to the class. I didn’t feel like it was accepted as well.
German Lopez:How did you feel about that?
Danny Harris:I’ve been in church all my life, and I’ve seen the best times and worst times. It seems like in the faith community we often wind up shooting our wounded. We don’t want to be reminded that we’re all flawed and we all have problems and we all have issues to deal with.
To them, living in Arkansas, being HIV-positive communicates a lot of things. It communicates that he’s gay, he’s nasty, and he’s having random sex with all kinds of different people. That’s what it communicates to that type of group here in Arkansas.
So I knew going in that it would probably be a difficult thing for some of them. But if we’re going to change the stigma, we have to make the disclosure.
German Lopez:The strange thing to me, though, is your infection came through an act of violence. Did you tell that to the group, and did they still react that way knowing that information?
Danny Harris:Yes. It’s still the same.
German Lopez:Why do you think that is? Do you think the stigma is just too strong?
Danny Harris:I think it’s because I’m a man. They just don’t perceive that men are attacked. They don’t see an act of violence or rape in a situation like me — that somehow I should have been able to stop that.
German Lopez:That seems like blaming the victim to me.
Danny Harris:Yeah. That’s what I feel in my heart is the main problem.
German Lopez:It must not be easy.
Danny Harris:I understand that that’s part of it. I’m trying to be one to break down those stigmas. At 52 years old, what else can I do with this? I’m just a grandfatherly old man.
When people see me, they’re often surprised when I tell them I do have HIV. You can tell they’re taken aback, because we still live in a state here that thinks you can get it from kissing someone or sitting on a toilet seat.
When I tell them that, they see a different side to HIV that they’ve not been shown. All they’ve been shown is the movie Philadelphia. All they’ve seen is the death. I’m showing them it’s about living and achieving and finding purpose in life.
German Lopez:How would you say this all affected your religious perspective?
Danny Harris:I’ve always been a little more on the liberal side in my interpretation. For me, I don’t that have a lot of stomach for organized religion anymore. I think we kind of missed the boat — we made churches irrelevant because we’re not reaching the people that are hurting, the people that religion is what they need.
Matthew chapter 25 talks about the parable of accountability. The judge says, "Well done. When I was sick, you came to see me. When I was hungry, you fed me. When I was naked, you clothed me." The judged asks, "When did I do that?" The judge says, "When you did it to the least of us you did them to me." As I see it, that’s the basic part of ministry — when you find ways to take care of the most basic needs of people and doing it in the right attitude, with the right heart. That communicates so many things to people, and that’s what I do.
German Lopez:In a way, do you feel like you’re making up for what the organized sections of your religion aren’t doing?
Danny Harris:Absolutely. I go places they don’t go or won’t go.
German Lopez:What do you make of the recent uptick in diagnoses among young people? What do you tell these younger clients when you talk to them?
Danny Harris:I try to be as real as I can. I do a lot more educating than counseling. I try to help them understand the way HIV is transmitted — the bodily fluids that are involved.
Then we talk real about what kind of sex you’re having, how you’re having sex, and some basic instructions on how to most protect yourself. If I go in and just say, "Okay, slap a condom on," most of them will immediately turn me off. You talk about condoms, but you need to talk about other things you can do to mitigate the risk.
I just get as much information as I can out there to continue to reduce the risk. Hopefully along the way the light will go off inside their minds.
German Lopez:How much success do you see with these consultations? Are these younger clients actually reducing their viral loads, as far as you know?
Danny Harris:The medicines work. We know that. If you’re taking your medicine, your viral load is going to reduce and go to undetectable.
When I talk to especially the younger generation, and they tell me their viral loads aren’t coming down, I just don’t take their answer. I tell them, "You’re not taking your meds."
It’s a simple process: if you take your meds, your viral load is going to come down. It’s just a matter of finding the right kind of medication that works with their lifestyle.
"I knew right then that my life had to change dramatically, because HIV was not going to kill me, it was not going to be what took me down."
German Lopez:How did you feel when you were first diagnosed?
Jimmy Walker:I was at Atlanta at the time, and I had just graduated from college as an adult. It was a pretty big accomplishment for me. I felt really sick, and I couldn’t really figure out what was going on. I went to the hospital, was there for four days. The fourth day, I finally got someone to talk to me because no one had said anything to me the whole time I was in there.
The doctor came that morning and said he had run a full gamut of tests to see if I contracted any kinds of diseases, and he told me all of those came back fine — but my HIV test came back positive. Then he walked out of the room and left me there.
I was shocked. My first response was to text my partner to tell him he needs to come to the hospital. But I didn’t really break down.
Since I was 19 years old when I moved away from home to be gay and get out of the South, I had a lot of friends and had seen people dying from AIDS at the time with no treatment.
I had got tested very regularly ever since then — since around 1989. So when the test came back positive, I was shocked.
I didn’t really let it affect me, but it affected my relationship. I had a lot of things I was dealing with. I was addicted to meth at the time. I knew right then that my life had to change dramatically, because HIV was not going to kill me, it was not going to be what took me down. From there, it was a process of putting one foot in front of the other and doing the right thing.
German Lopez:You mentioned you had just finished college when you found out. Being diagnosed must have been a devastating contrast to your achievement.
Jimmy Walker:It was just bad. As a matter of fact, my diagnosis and my addiction affected everything from that point. My degree was in fashion design, and my options for successful work in that field were New York, Miami, and Los Angeles. I knew I had to get out of Atlanta, and I just couldn’t make a decision to move to one of those cities knowing what I was up against with my health and my addiction at the same time and think I could survive. I knew that I had to get someplace away from the drugs, and I had to find a healthy environment. So it was just a wasted education.
German Lopez:How involved were you with drugs at the time?
Jimmy Walker:Over the period of 10 years in Atlanta, my meth addiction progressed to daily use. I was never an injection drug user, although the one time I did stick a needle in my arm was a couple months before my diagnosis. I’m pretty sure that’s where my HIV came from.
When I told one of my friends at the time, all he could focus on was that I used a needle. He just asked me why I did it.
So I was a daily meth user. I was highly functional, but it was killing me.
German Lopez:Have you completely stopped since then?
Jimmy Walker:Absolutely. I left Atlanta in November 2007, and I never looked back. I knew the drugs could no longer be a part of my life, and I’ve stayed sober ever since.
German Lopez:How was the process of coming out to your family? How did they react?
Jimmy Walker:My mother is my best friend. It was hard. I had to tell her face-to-face, since I didn’t want to tell her over the phone. She knew long before I got there that something was wrong. It was eight weeks after I was diagnosed that I was able to get home.
I had a tumultuous relationship with my father, who’s a minister, all of my life, but I had an instant moment of clarity. I couldn’t let my mom deal with it all on her own, so I had to tell my father as well, and it needed to be from me.
It wasn’t easy to do, but it was probably the best thing that’s ever happened for me and my father. We developed a relationship over six or seven years that I just never dreamed would happen, and it happened from that day forward.
For my extended family, it was later in the year that I went to a family reunion. That’s when I really realized I’m HIV-positive, and I had a complete breakdown at the hotel. My entire family rallied and supported me ever since.
German Lopez:The story with your dad seems remarkable. I’ve heard a bit about fears that families will reject HIV-positive members. For you, it seems like the opposite happened.
Jimmy Walker:It did. It goes back to what I told my mom years ago: I had to know because of what I watched. It was so alone. I had to know where my support was coming from. The reason I told them was for that reason only: I had to know if they were going to support me. If they didn’t, I didn’t have time for that.
The reaction was just amazing. As an advocate here in Arkansas, I tell people, "Tell your families. They’ll surprise you." I know there’s a lot who don’t get that support, but there’s so many who can have it if they just reach out.
German Lopez:How did your friends react to the diagnosis?
Jimmy Walker:After my diagnosis, I realized I have to get to get out of Atlanta, get to where it’s safe, and live my life. I changed everything, and my old friends never had anything to do with me again. They haven’t visited me, and they’ve never called me. I’ve never heard from them again.
German Lopez:What happened after the split with your Atlanta friends?
Jimmy Walker:I decided I’d go back to school to get my degree in nursing, so I could be a traveling nurse and wouldn’t have to make any attachment to anybody. I didn’t want to be attached to anyone anywhere. The separation of my friends through the diagnosis was extremely devastating to me, and I just set my life up so I wouldn’t have to worry about it.
I recently graduated with my second degree. It was not in nursing; that didn’t work out. But in the process of being here, I managed to get a job at my doctor’s office. In the course of that job, I got hired by the Ryan White HIV/AIDS Program to be the central advocate in Arkansas.
Part of my job was to start a support group, and part of that curse — not really a curse, but I thought it at the time — was one of the ladies in the group got attached to me and basically made me become her friend. The support group is my family. The people that come to my support group are worrisome as hell, but I know if I needed anything all I have to do is pick up the phone and they’re there.
Now, when I look at the life I was living in Atlanta, it was probably for the best that I left. I didn’t need that influence. I needed a clean break.
German Lopez:How did your diagnosis affect your romantic relationships?
Jimmy Walker:Well, I left my ex in Atlanta. He was a drinker, which I realized pretty quickly. It was all in all a good relationship — except by 8 every night, he couldn’t remember what happened between the hours of 5 and 8. I was a bit disillusioned, but I made a conscious decision to stay in the relationship because I figured people had to settle with what’s closest to what they want.
Over the course of 10 years, he was brave enough to try different things with me. But he was always a little skeptical and afraid of catching something. Once I found out I had HIV, it felt like it had been everything he warned me about. So when I found out, I broke it off without question.
Since then, I dated one guy. Before we were really out of the door, I told him I’m HIV-positive. He gasped and told me he didn’t know what to say. He said he wasn’t sure how he was going to tell me that he was HIV-positive, too. I told him he was an idiot, and he just needed to say it. But that didn’t work out, because I found out he was cheating on me. I actually found out through the Health Department, because they told me that I had been exposed to syphilis.
I’ve tried dating people. It’s not been an issue of being positive. The harder issue is that I’m a recovering addict. I lose more relationships because people don’t want to let go of their drugs.
But right now I do have a serious contender. He’s the guy I’ll spend the rest of my life with, if I have anything to do about it. He’s also positive, and we were both very upfront from the very beginning.
German Lopez:How about the communities you’re involved in? Do they know about your HIV diagnosis?
Jimmy Walker:I went to a church here, and I disclosed to a group there. I didn’t get any negative reactions.
But I don’t go to church there anymore. I don’t go to church anywhere. I get too frustrated. The definition of Christianity is Christ-like, and I fail to see why the leaders of these organizations ever consider that their rules and judgments against their congregation have anything to do with what Christ was like. To put myself in that situation every week and deal with it, I won’t go there.
I still have faith, but it’s not something I go to church for.
German Lopez:Are there any other communities you’re involved in?
Jimmy Walker:The only other community I’m involved in here is the theater community, and that community is pretty strong. The community I’m involved in is issue-conscious, so it focuses on issues facing gays, Jewish people, and black people.
When we were rehearsing Raft of the Medusa, the issue came up. One guy said people transmitted HIV knowing they had the disease. It just blew all over me. I asked him, "Are you serious? You really think people who are HIV-positive try to infect everybody?" I mean, I know there are some people who go out and intentionally try to infect other people. But that shouldn’t be the perception.
That kind of outed me in the theater. It was the first time I came out in a really social way.
They were completely supportive. Through that conversation, the young man pulled me out at night and asked me where he could go because he’s HIV-positive. Suddenly, the whole rehearsal made sense.
German Lopez:One thing I’ve heard a lot is that people are really afraid to come out as HIV-positive. Then they come out, and it goes much better than they expected. It seems like that’s something you’ve gone through too.
Jimmy Walker:Oh, yeah.
The first day I met Leslie, one of my clients, she hated me. But she said one of the things that made her love me is that I act like I want to run down the streets of Little Rock with a big red ribbon on my shirt and tell everyone I’m positive. She said no one in her life was willing to take that kind of stance and support her.
As an advocate, I’m just able to tell people that with treatment your numbers will improve.
German Lopez:In your case, it seems like coming out has been helpful to others on top of being personally gratifying.
Jimmy Walker:Yeah. It’s kind of what I live for. It’s what makes me get up in the morning. It’s what makes me not quit my job. There are days when I want to throw my hands up, but I can’t. Even trying to make a transition — I’m in graduate school now — I don’t think I’m ever going to be able to change my career path. I love what I do. I love being able to get the right information to people. I love letting them know that life can be anything you want it to be.
"Some people still have this antiquated idea that you can’t be around a person with HIV without being at risk. Come on, people."
German Lopez:Take me back to when you first found out you’re HIV-positive.
Tony Walker:Well, I found out before there was really any medication for it. It was pretty much a death sentence. I purposely didn’t go on medication because I felt the medication was doing more harm than the actual disease to people.
German Lopez:Back in 1993, was it much more devastating to find out you had the disease?
Tony Walker:I found out in the summertime. I honestly thought that by the time winter came, I was going to catch a cold or pneumonia and die. I stopped dreaming. I was 25 or 26 years old, and I said screw that. I just kind of sat there and waited for death to happen.
German Lopez:How was telling your friends and family about it?
Tony Walker:I just told them about it. I didn’t feel comfortable telling them until now. I had told my friends and family about my homosexuality, and they were accepting of that. But because of the stigma attached to HIV, I just didn’t think they were going to be accepting of that. Thankfully, I was wrong.
German Lopez:How did you come out to your friends and family?
Tony Walker:I told my family as I started to work with AIDS Alabama.
I had an interesting conversation with an older man, and he told me this story about his brother about how his family found out he was positive after the brother died. He told me, "I wish my brother told me he was sick." I asked, "Well, what would you do if you knew?" He said, "I don’t know. He should have told us. That was a horrible way to find out." Then I pointed out the stigma. But he made a good point: "If my brother had told me he was sick, he wouldn’t have had to die alone."
At that point, it made me think about my folks. I wouldn’t want them to find out any other way than me telling them. So I went ahead and made that happen.
German Lopez:How did your status affect your relationships?
Tony Walker:Some people shied away. Other people were like, "Okay, I’m with you."
I’ve been in a relationship for six years with a guy who’s negative. He’s been very, very supportive. We actually adopted a nine-year-old last year.
German Lopez:Even though your viral load is low, do people seem to react with fear?
Tony Walker:Yes. I dated this guy for about two months. Right before we got ready to get closer, I told him and he couldn’t deal with it.
German Lopez:How did your current partner react to it?
Tony Walker:He knew from day one, and he didn’t mind. He had dated someone who was positive before, so he was very educated on it.
German Lopez:So how does that work? Do you just insist on protection?
Tony Walker:When we first started, we used protection. But he kept pressuring me not to use protection, and we stopped for a bit.
At that point, I thought he’s either lying about being negative or he has a death sentence. He told me that he just thought there was a very low chance of him catching it, since my viral load was undetectable.
But then I fell in love with him. I was like, we need to stop this. I told him to go get tested, because I need to know whether or not you’re crazy or lying to me. He got tested, and he was negative. He’s remained negative.
German Lopez:How have people in your community, such as your church, reacted?
Tony Walker:I haven’t made a proclamation at church. But I’ve done some education for high school students. It’s been pretty well received.
The people at my church, though, are involved with the HIV clinic. So they’re better versed on HIV than most people here in the South. So I think once it does come to light, I don’t think it’s going to be a big issue for them to overcome.
German Lopez:From what you’ve told me, it sounds like you were worried about coming out, but those results were never realized. Is that right?
Tony Walker:Yeah. I feel like a total dumb-dumb about it.
I feel like coming out has also helped me show other people that the stigma isn’t really correct. Some people still have this antiquated idea that you can’t be around a person with HIV without being at risk. Come on, people. This is 2014. We should know better.
German Lopez:Do you feel you’re lucky that the reception has been generally positive?
Tony Walker:On one hand, I think I’m extremely lucky. On the other, I think if other people do what I’ve done they’d be happier.
It’s just like being gay. Twenty years ago, it was a very bold move to tell my folks that I’m gay. Twenty years ago, if you turned on the television, you didn’t hear anything good about gay people. But we have become more open with our identities, and it’s being slowly destigmatized.
German Lopez:Do you think it’s important, then, for people to come out as HIV-positive to show that you can be completely normal?
Tony Walker:Most definitely.
German Lopez:What else would you like people to know about your experience?
Tony Walker:The stigma is self-imprisoning. You put yourself in prison when you worry about what people are going to say. The people who care, they shouldn’t matter. So there’s no reason to punish ourselves.
"I have to take a pill everyday, and I have to worry about getting a cold. It’s just little stuff. I don’t brush it off, but I don’t sit in it."
German Lopez:Tell me about the moment you found out you’re HIV-positive.
Maliek Powell:I received a phone call from the Health Department. I thought it was a joke. As much as the caller was asking me for information, I was also asking him for information. He told me to come down to the Health Department, because somebody I had been with had tested positive for HIV. I asked him his name, what office he worked in, his title.
After we got off the phone, I googled that caller, and I looked at the Health Department number just to make sure this was a real call. I called back, and asked for the person who called me. I told him I had to make sure I knew this was a real.
Down here, in the South, when you do hear about HIV, it’s in a joking way. People really don’t take it too seriously. They’re usually saying it to hurt somebody or joking about it.
I ended up going to the Health Department on a Friday. I went with my partner at the time. Of course, we had to wait on the HIV results, and it was a weekend.
But by Monday evening, I didn’t receive a call back. I thought maybe it’s a good thing I haven’t received a call, or maybe it’s not. So I called. He told me I needed to come back in.
At the time, I didn’t have a vehicle to come back in. So I said I need to know what’s wrong, and I already waited the whole weekend. He told me that I was HIV-positive.
As I was hanging up the phone, my sisters and my mother were coming through the door. Before my mom got out of the way, I went out the door and closed it behind me, and I immediately told her. She was the first person I told.
I cried. At the same time, my initial reaction was, "Okay, after I finish crying, we need to figure out what we need to do now."
That’s just how my family is, though. My mom is a quadriplegic. My aunt is an amputee. I just come from a strong background of people. So if something comes up, we take it on.
From then, it was a matter of getting in treatment. I started treatment on the day of my birthday: July 12, 2012.
For a whole year, I went without telling almost anyone. The only people I told were my immediate family, except my sisters. My family is my support team. I used that year as a moment of my personal therapy. I researched. I looked at people who were open about their status, networking with people, talking to people on Facebook.
I knew I didn’t want this to be a secret. Anybody that knows me knows that I’m pretty much an open book: what you see is what you get. I wasn’t going to let HIV define or change me.
I asked people how they got to the point where they were okay telling people they’re HIV-positive. Those were the people I followed. I needed to know what I needed to expect.
A year after I found out, I decided to post my status on Facebook, Twitter, and Instagram. Mind you, this was news to pretty much everybody — except for my support system, my family.
I wasn’t really thinking about reactions. But I got great responses.
From there, I started volunteering for HIV prevention and outreach. I had always been involved in my community. So I had to do that work to prove I’m still Maliek.
German Lopez:You mentioned your family was supportive. Was this true for everyone in your family?
Maliek Powell:My mother’s reaction was that she embraced me. My family in general is very supportive.
Now, my dad is outside the family. Before I spoke to him, I ended up going to the hospital and I had the flu. I called him, and I told him I’m in the hospital. He knew that something was wrong, so it didn’t take him by surprise. But my dad isn’t supportive at all. We’ve never had the best relationship, probably because of my lifestyle.
My mom makes me feel like we’re in this together. My dad, I don’t get that from him.
German Lopez:How did it go with your friends when you told them?
Maliek Powell:I actually told my close friends before it got on Facebook. It was about five of us. They were very supportive. Initially, I think it caught them off-guard. It pulled some of us together, but it pushed some of us apart.
From there, it was a ripple effect. My friends know, my family knows, this guy I’m involved with knows. So then I put it on Facebook.
German Lopez:Have any of those friends that were pushed apart come back since then?
Maliek Powell:Yeah. Everyone that was in my group, all of them are in a good space now.
German Lopez:How about your broader community? I’m thinking church or any other sort of social group.
Maliek Powell:I do go to church. My mom has an outreach ministry, so I know people in her world know. I consider myself a pastor kid almost, because coming up that’s all we hung around. They have been supportive. I haven’t gotten any negativity as far as I know.
One of my mom’s church friends had a fishing show, and she invited me to be in it. Just little things like that help.
German Lopez:Did your status affect your romantic relationships at all?
Maliek Powell:The guy I first told, who’s HIV-negative, and I are kind of on a break. I can say a lot of stuff played a part in getting us to this break, but my HIV status was not one of the issues. My status never played a big part. Then again, this is as far as I know.
Although at one point he told me, "Sometimes I don’t think you have HIV, because I never even see it." I was like, "Well, this isn’t something you can see." He said, "Well, I don’t see you taking your pills or anything."
Before that point, he never had seen me taking my pills because it was something that I tried to keep from him. This was a whole new ballgame. I didn’t want to put too much on him at one time.
But when I first started doing outreach, he was there every step of the way. Really, the problems we had we would have had even if I didn’t have HIV.
German Lopez:Were there any other relationships in this time span?
Maliek Powell:I had a few former relationships come back in my life. One guy in particular that I was kicking it with, I knew that I couldn’t take it to that level. I just wasn’t ready to take it to that level.
German Lopez:One issue I’ve heard a bit about is the perceived stigma. I’ve heard from a couple people that they were terrified to come out as HIV-positive, but once they did they realized there was nothing to fear. Did you share that experience at all?
Maliek Powell:I totally agree. I thought, why did I wait a year? As soon as I posted my status, I just kept wondering that. It could have been easier not going through that year.
German Lopez:You sound fairly happy overall. Do you feel optimistic about how you’re dealing with the disease?
Maliek Powell:I do. Just like anybody, I have my moments. I have to take a pill everyday, and I have to worry about getting a cold. It’s just little stuff. I don’t brush it off, but I don’t sit in it. That was something that I’ve always seen my mom do, and I never saw her sit in her pity. That’s what I have to do. There’s plenty of times when I don’t want to get out of bed, but I don’t sit in it.
"I get the opportunity to be the voice for those who feel they can’t talk about it or feel like they’ve lost hope."
German Lopez:How did you find out you have HIV?
Tommy Luckett:I was losing my hearing. I was getting my hearing test done, and waiting to get my hearing aids fit in. I told the audiologist that my hearing has worsened. She was concerned because it had only been three weeks from getting a hearing test. So she set up an appointment with another doctor.
Going to talk with the doctor, he told me there was some hearing loss for sure, and he used a scope and went inside my nose, and he saw that my left node in my neck was swollen. He gave me a scare that it was lymphoma. I went and had an MRI, and it wasn’t lymphoma.
Then he asked me about my HIV status. I told him I didn’t have it. He set up another appointment, and I had the test done. A week later, I got a call and found out I was HIV-positive.
I felt fear, like I was going to die. I didn’t know what I would be able to do, because I knew that I didn’t have the money to pay for any medication. I had already heard about how expensive the medicines were.
Instead of giving up, I went to others to see what other people knew about what resources are out there. I got online. In talking with a friend in Memphis, she assured me that if Memphis, Tennessee, has resources available for people living with HIV/AIDS, then Little Rock, being the capital of Arkansas, most definitely should.
So I looked it up online, the Arkansas AIDS Foundation came up. I called, and I spoke with a doctor at the foundation who told me that my best route would be to get in contact with ARK Care.
I called ARK Care. They asked me for some personal information to fill out that shows I’m HIV-positive and my financial position. They determined I’m eligible for the Ryan White Program, and with that I would get my medicine, and I would have access to therapists if I needed because I felt depressed or anything. In speaking with ARK Care, they also gave me a list of specialists here in Arkansas that I could choose from.
So I called the specialists, and some of them had appointments two to three weeks out, and that’s what made me freak out. I was like, no, no, no. Then I found a clinic that was sponsoring a study for HIV-positive people, and they told me I could come the next day. That’s what I did, and I became one of their patients. This was months after I found out.
German Lopez:How soon did your family find out?
Tommy Luckett:I later spoke at an LGBT conference — the first one ever in northwest Arkansas. That prompted me to tell the rest of my family, because the only person I had told was my mom.
My mom told me that in time I would tell the rest of my family, but she wasn’t going to do it for me. So it was our little secret for almost a year — until I did the LGBT summit.
I felt okay then. I told the rest of the world, I should tell my family. That’s what prompted me to tell my sisters and my brothers, and they told their children. I have a very, very strong support network as far as my family and friends.
German Lopez:How did it go when you told your mom first? How did she react?
Tommy Luckett:I went in. My mom doesn’t see me often, so she was pretty happy to see me. I put down my bags, and I sat down on these loveseats with her.
I asked her, "How are you doing?" She told me how she was doing, the little health problems she has. And I said, "Well, since you mentioned it, how do I look?" She said, "You look like a girl!" I said, "No, besides that! How do I look? Do I look healthy?" She said, "Yeah. You look fat." So I was like, "Okay, besides that, I have something to tell you." And I told her that I found out that I’m HIV-positive.
She looked at me with silence. It lasted for maybe 10 seconds, and I thought she was uncomfortable.
I told her, "I’m okay, mom. I promise I’m healthy. I’m taking my medicine." I went inside my bag, and grabbed my medicine to show her I am on medication.
Her words to me were, "Okay. Just as long as you’re okay. Continue to do what the doctors say. You know I love you and support you and I’m going to be here." She told me that I could always tell her anything, and I didn’t have to take that long in telling her.
I explained to her that in listening to different people share their stories, some of their family members rejected them. I told her I was just scared, that I know I could always talk to her, but this was different, and I didn’t want to make her see me differently.
I eventually told the rest of my family by phone. A couple of them broke down, because when the family hears HIV, they hear death. So I had to make a trip back home the following Tuesday, so everyone could look at me and see I’m okay. I had to explain to them that the last time they saw me — in Christmas — I was HIV-positive, so nothing was different. And I showed everyone my medicine.
German Lopez:Have you kept it from any other family members?
Tommy Luckett:The only person I haven’t told in my family is my dad. I’m under the belief that my dad is having early onset dementia, so if I tell him, it will be the first time that he hears it because no other family member has told him. But his memory comes and goes.
If my family is talking about it and they mention me, and he goes through one of those bouts where he doesn’t remember I told him, he’ll be hearing it again for the first time. I just don’t want to put him through that.
But I told everyone else. I even told my sisters on my father’s side. They all know. They all love me the same.
German Lopez:Have you told friends outside your family?
Tommy Luckett:Yes. I actually told my best friend before I told my mom. Before I even started my medication, she knew. I told her as soon as I found out. She told me about a serious problem that was going on with her, and I decided I could trust her if I couldn’t trust anyone else.
I also told several other friends. I told my group in Alcoholics Anonymous, because I am a recovering addict. I disclosed to the entire group.
Everybody has treated me with nothing but respect. I’m just one of the fortunate ones, I would say.
German Lopez:You haven’t had anyone with negative reactions?
Tommy Luckett:I haven’t had that yet. No one, not even when I got in a relationship.
I met someone online, and there were two things I wanted him to know. One, I’m transgender. Two, I’m HIV-positive.
I gave him the option to decide if he wanted to pursue a relationship and take the risk with me. That option was taken away from me when I was infected — and I wouldn’t do to him or anyone else what was done to me.
I tried to make the relationship work, but it just didn’t work out. I was in a completely different place mentally than he was.
But I’ve met nothing but positive reactions.
German Lopez:Is that the only relationship you’ve been in since you found out?
Tommy Luckett:Yes. That’s the only personal or dating relationship. After I found out, I just completely shut down as far as relationships. I had to learn what it was like to live positively, and I really wanted to get to me.
I almost didn’t even give this last relationship a chance, because I was in that same head space in which I worry enough about my health, and I don’t want to worry about if we were safe enough.
German Lopez:Do you still feel that way?
Tommy Luckett:Right now, it just hasn’t come up. There is only one person that I’m actually talking and texting to. I met this person when I was in DC, and we’ve only been talking and texting. I haven’t actually been with him, and I don’t know that I ever will.
I just don’t want to feel like someone wants to take care of me. I’m independent. I’m not disabled. I hate that people would make me feel dependent.
I have no want. All of my needs are met, but I have no want. I don’t want for anything. That’s what I’m trying to get people to see.
If nothing else comes from this, I get to be the opportunity to be the voice for those who feel they can’t talk about it or feel like they’ve lost hope. I hope they say, "Well, if Tommy did it, I can do it."
German Lopez:How about your community, like church?
Tommy Luckett:I do go to church. There’s only one reason I haven’t told my church: my former roommate introduced me to the church, and I haven’t told him because he’s a blabbermouth. Any little thing I did when we lived together, he told all sorts of people, even if I told him it was just between us.
Like when I told him I was starting hormone therapy, he told his friends. They were like, "Why doesn’t Tommy just get a breast implant?" First of all, it’s none of your business. Second of all, it’s not what I choose. Third of all, how dare you go out and tell people?
I don’t think he means anything by it. I don’t think he’s doing it in a malicious manner. I just think that’s who he is, and I’ve come to accept him and love him for who he is.
But when I’m ready to tell my church, I will do it.
German Lopez:Do you think your church would be accepting of it?
Tommy Luckett:I really do.
German Lopez:One thing I’ve heard about is that people were scared to come out as HIV-positive, yet when they came out, it turned out to be not be so bad. It sounds like that was your experience.
Tommy Luckett:Yeah, yeah. I had only told my best friend and my mom. Up until February 2014, I hadn’t told anyone else. I was diagnosed in December 2012, so it was over a year until I let anyone else in.
But now, I’m in an entirely different place mentally and spiritually. Whether it’s accepted or not, I’m okay.
German Lopez:Do you regret not telling people earlier?
Tommy Luckett:Yes. I felt so bad. I felt really bad not telling my family earlier. That’s why I made the trip back home and stayed there for two days so they could see me.
I deeply regret not telling my family and the friends I have told, because I’ve been met with the same reaction. They’ll cry, but they’ll see I’m okay. But they may think how long I’ve gone through it by myself, and that makes me sad.
"One time, walking back to my dorm, I was called "the HIV girl" by a group of guys."
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Editor: Eleanor Barkhorn
Designer: Adam Baumgartner
Developer: Nicole Zhu
Special thanks: Uy Tieu, Tyson Whiting, Jon Douglas, Chao Li, and Mike Case