This article first appeared in Mademoiselle Magazine, February 1993, written by Chip Brown. Photographs by Mary Ellen Mark. It is a throwback to understand the gravity of the HIV / AIDS Epidemic in the 1990s
Dying Young: AIDS Among Teens
In the last two years AIDS cases among 13- to 24- year-olds rose at a faster rate than those in any other age-group. If teenagers don’t learn to face AIDS, losing their virginity could mean losing their lives.
This is what you don’t see, what’s missing from the clinical reports and the grim statistics and somehow always seems to get lost in the homophobic uproar about values and morals: a young man, a child really, edging gingerly into a conference room at the Adolescent AIDS Program at the Montefiore Medical Center in New York City. He’s thin and tall with slender hands and clement eyes; his name is Steven, and he’s just turned 20, and when he got sick two years ago, he lost his voice. “I sound like Kermit the frog, “ he says in a raspy whisper. And as he begins to talk about his life, the reality of AIDS takes shape not in the numbingly abstract terms of social policy and scientific research, but in the particulars of a human story, the story of a young man whose future is so gravely foreshortened that even as the time approaches for him to prepare a will, a part of him is still on Sesame Street.
Steven grew up playing stickball and two-handed among the boarded-up buildings of Melrose Avenue in the South Bronx, not far from Montefiore. He was an only child. He didn’t know his father other than that the man did drugs. “I was hatched,” he says. “I’m an eggling.” His mother was a strict Baptist. When Steven failed a class, she cut off TV and radio, and kept him home from church. First grade was when he knew he liked men. He started having sex when he was 12, but had no one to talk to. It was not until high school that he learned of AIDS.
“I had no information,” he says, “It was very hush-hush. There weren’t many cases of AIDS. Only the old queens got it, young people didn’t get it. I contracted gonorrhea when I was 13. My mother thought it was gallstones, and when they told her she nearly passed out. ‘Boy, what is your problem? Are you married? You should not be having sex. Who is the girl?’ The thing was, it wasn’t a girl, so I didn’t say anything. At the time my mentality was to go out and get all I could get, and that’s what I did. I like to be held. Older men would be tapping on my window. If you had nice eyes you came to my house.”
Five years later, he was hospitalized with headaches so painful he couldn’t blink his eyes: an outbreak of parasitic toxoplasmosis, the result of a suppressed immune system. “The doctor told me ‘You’ll never see your nineteenth birthday.’ He gave me no sympathy, no encouragement. It was just ‘You’re gonna die.’ “And so he missed his high-school graduation, lying in the hospital for two and a half months. His weight dropped to 60 pounds. “I never did so much crying in my life, I cried night and day, and night, all day, every day. The nurses would come in to talk and I threw the covers over my head.’
His plans fell apart. “I was going to go to college and study business administration. I’m an office person. We used to play office when I was a kid. I was always the receptionist. That I could sit behind a desk with my name and telephone and a typewriter and make a living…”
A look crossed his face that seemed to say, What could be more wonderful than that? His high school diploma hangs proudly on the wall of his room. He still hopes to go to college somewhere, ideally out of town so he can get away from his family. “They feel if they don’t say anything, it will go away, “ he said. He says he’s not scared-or wasn’t until a friend recently died of AIDS. And thanks to Magic Johnson, he knows he wants to help fight the disease by talking about it.
“People are so close-minded. I thought if he could do that then maybe I could go a step or two further, maybe I’ll be able to stand up and talk about it. Some days I can’t even get out of bed. But when people tell me I’m gonna fail, I set out to prove them wrong. It’s given me an inner strength, I can’t describe it. I always say I’m built to last. You know the three little pigs, the one who made his house with bricks-well, that’s me, I’m built of bricks.”
When Karen Hein, M.D., set up the Adolescent AIDS Program at the Montefiore Medical Center in 1987, her colleagues jokingly called it the Emperor’s New Clinic because there were no patients. Today the clinic has treated more than 80 infected teenagers. Two thirds of the patients are male, most of them African-American or Latino. Like Steven, many of them are local kids who grew up nearby on the mean streets of the Bronx. They had no idea they were the first wave of what AIDS researchers now fear is an invisible legion of HIV positive adolescents-fears that are informed by an onslaught of remorseless statistics.
In the last two years, AIDS cases among 13- to 24- year-olds have risen 77 percent. While the total number of adolescent AIDS cases is still relatively low-about 9,000 nationwide-people in their twenties account for over 20 percent of all AIDS cases, and given latency periods of up to 11 years, it’s clear that most people with AIDS in their twenties were infected with HIV in their teens.
“My level of concern is so high not because of the number of AIDS cases-it’s the setup,” said Dr. Hein. “We estimate only about twenty percent of adolescents even know they’re carrying the virus. An at-risk youth at this point is anybody in this country having unprotected sex.”
Other sexually transmitted diseases reflect the potential devastation of HIV. One of six teens will become infected with an STD by the age of 21, according to the Washington-based Center for Population Options. Women-a disproportionately high number of them adolescents-are now the fastest growing subgroup of AIDS patients. The virus is thriving on the lethal complacency or people who insist on thinking of AIDS as a gay disease of a plague that only affects inner-city intravenous drug users.
HIV risk to adolescents is heightened by many factors, but virtually all of them point to the nature of adolescence itself, that tumultuous period of rebellion and experimentation when identity and sexuality are just unfolding and behavior is often driven by a hormone-leavened sense of invincibility. A period of taking risks, not skirting them. And therein lies the problem.
Unfortunately it’s impossible to talk meaningfully about AIDS without talking about sex and sexual identity. While nearly every state now either requires or encourages some sort of program for AIDS-and -sexuality education, moralistic factions have hamstrung the efforts to give teenagers explicit information. Prevention efforts are paralyzed by the political tension between those who say they are realists trying to fight an out-of-control fire and moralizers who say fighting the fire is making it worse, and probably caused it in the first place. A group of doctors in Dallas files a brief attempting to restore anti-sodomy statutes; meanwhile the high-risk act of unprotected anal sex is becoming a popular method of birth control among heterosexual teenage girls.
In New York City, which has the highest concentration of adolescent AIDS cases in the country, the Board of Education has barred a pamphlet prepared by the city’s own department of health because it shows teenagers how to put on a condom. Much political effort was required two years ago to get condoms distributed in the public schools. Last spring, the board took a step back, and demanded outside AIDS educators sign a “loyalty oath” promising they would devote the bulk of their AIDS education classes to stressing abstinence.
When outreach workers Miguel Rivera and Maisha Uzuri James left the Mt. Sinai Adolescent Health Center (Kerry Washington, STAR Theater member pictured here) on a September afternoon, they headed north of 103rd Street, up through the poor precincts of Spanish Harlem, where saving lives means buttonholing teenagers and pushing condoms. Each of them is lugging a satchel laden with boxes of Lifestyle condoms, some of the 20,000Mt. Sinai distributes yearly.
The pair introduced themselves to a group of young teenage boys lounging on a stoop and gave a quick spiel about the hospital’s adolescent clinic. The boys eyed them warily. Miguel, in his late thirties, was born in Puerto Rico, but grew up in the area. Maisha, at 18, was one of Mt. Sinai’s young “peer educators” - a growing cadre of young people who have emerged as some of the most effective apostles of AIDS education and prevention.
“Do you need any condoms?” Miguel said. The kids’ faces lit up; they smiled, a little embarrassed, and took the packages self-consciously, except for one of their mates who said, boldly, “I’ll take two.” Everyone laughed. “Stay safe,” Miguel said. “Stay safe.”
Further up the street, another stop. “Excuse me-” Miguel starts but the teenager, older than the last bunch, recognizes him. “Yeah, I know I know,” he says. “I need some.” Miguel slaps some condoms in his hand.
“Okay?” “Okay.” “You sure?” The kid nods. “Stay safe,” Miguel says.
Up Madison Avenue, toward 125th, from knot to knot of teenagers gathered outside housing projects and boarded-up buildings and asphalt playgrounds, Miguel and Maisha move like Mr. and Mrs. Santa Claus, passing out condoms and counsel. They make no moral judgments, but take the world as they meet it. In that part of New York, it’s not uncommon for kids to be having sex at age 11-long before many of them know the risks.
Adolescents everywhere are shedding their virginity at increasingly younger ages-the average is now around 16. Why this is so, and what should be done about it, is the subject of much debate. Scientists now believe that better diets cause puberty to come earlier than it once did. Social critics cite the influences of a culture that uses sexual imagery to grease the consumption of sneakers and beer and perfume-everything except condoms, as some AIDS educators have wistfully noted.
Condom use among adolescents has increased in the last few years, but still fewer than half of sexually active young people take measures to protect themselves. What AIDS educators have learned is that it’s one thing to make information and condoms available, another to change behavior.
“When I was younger I always carried condoms,” said Maisha. “I used to get labeled. People said I must be sex-starved, I must have HIV. Now it’s ‘Maisha, can I have some condoms?”
She gave a handful of condoms to a few boys who didn’t seem the least embarrassed to be getting them from a girl. Like Miguel she’d learned to read the streets, making quick decisions about kids, by passing the ones who seemed too young or too old. There were subtle protocols to observe. They had to be careful not to press condoms on kids traveling down blocks frequented by prostitutes, lest an insult be inferred. It was generally easier to give condoms to boys because there was less danger of them thinking you were impugning their virginity. They frequently encountered some of the nation’s 1 million runaways-street kids who have fled abusive families and are feeding themselves with the proceeds of “survival sex,” often forgoing a condom because a john will pay them an extra ten bucks. Preaching abstinence to them is like singing hymns while the church burns. Condoms are invaluable, if as nothing more than a way to get the attention of many kids.
Their targets are supposed to be young people only, but Miguel made it a point to swing by the prostitutes along Park Avenue and 123rd Street.
“Do you have any bleach?” asked one vacant-eyed woman; she wanted to disinfect a needle.
“No darling,” Miguel said, “but here’s some condoms.”
Forlorn-looking women in jeans drifted up, taking as many packs as Miguel could spare. One older woman, 30 going on 60, stumbled along in a narcotic haze, Miguel caught up with her. “Want some condoms sweetheart?” She seemed taken aback, almost surprised. “Thank you,” she said. Eyes that looked as if they had not seen much kindness in their day came briefly to focus on Miguel. “Thank you, “ she said again. “God bless you.”
The centerpiece of the Mt. Sinai Adolescent AIDS Prevention and Treatment Program is S.T.A.R. Theater, which was started in 1988 by a former actress named Cydelle Berlin who went back to school and got a PhD. in human sexuality. The troupe of 11 young actors performs more than two dozen skits on themes related to teenage sexuality. Afterwards, staying in character, they discuss the stories with audience members at high schools and churches and community fairs.
Marc Shelton was in the first class of actors at S.T.A.R. Theater, but unlike the others, he was HIV-positive. The other actors knew of his condition, but he kept it private during performances. Then Ryan White died, and it hit him hard. It made him think it was his turn to stand up and talk openly about being a teenager with the AIDS virus. And so now, sitting in a coffee shop on Manhattan’s East Side, he makes no secret of his T-cell count-110; normal is about 800. Or of the adversity in his life, the times he had to drag his mother upstairs to bed after drinking binges, the confusion he felt growing up in and out of a foster home, shuttling between his parents’ residences. Or of coming out, and acknowledging an attraction to men, an attraction he can trace back to when he was nine, and the tension he felt when his sexual feelings came into conflict with his faith and the scripture that condemned homosexuality.
“For the last two or three years I’ve been struggling with whether it’s wrong or right to be gay,” Marc said. He’s 22 now, a blue-eyed, jug-eared freshman who would often pose questions for himself in conversation and had the air of someone puzzled by his contradictions. He is studying to be a social worker. “Society is telling me it’s okay to be gay, religion is saying it’s wrong. When I was sixteen I told a counselor at school I’m having these feelings about men, they’re not normal. If she had opened the Bible I think I would have followed that path. Instead she said, “It’s okay to be gay, it’s normal.”
The year he came out was the year he got his ear pierced and started having sex. “I didn’t know anything about condoms, no one told me anything about condoms.” He met people on the train, on the street, on the subway. He enjoyed flirting. In January 1987 he tested positive for HIV, having gone to a doctor with a case of mononucleosis. When the bad news came, he shrugged it off, and it wasn’t until a few months later when a friend died of AIDS that the reality finally sank in.
“I went to a local schoolyard and I remember banging my fists on a brick wall, saying, ‘I want it out of me! I want it out! Why me? Why me?”
In time he began to tell his friends. His grandmother bought him a plot in a cemetery. Inspired by Ryan White, Marc trained as a peer educator, went to conferences and sat for interviews.
“If no other young person is going to do it, I am,” he said. “I feel I have an obligation to go forward and say, ‘Listen, condoms ought to be available in schools to save lives.’ I have an obligation to be there for kids to lean on-I want to be that top notch person.”
I had a few other interviews with HIV-positive adolescents. After one, when we were getting ready to go I asked the young man if he was seeing anybody. He had been seeing someone for “a long time,” he said. And how long was that? “A month and half,” he said. Then it came out that he was not using a condom. Not only was he forgoing a condom, he hadn’t told his lover he was HIV-positive. In Oregon last November, a similar omission led to the conviction of a 28-year-old bartender who had slept with a 17-year-old girl.
Why hadn’t this teenager told his lover? He didn’t know. Yes his silence was wrong, he said, it was inexcusable, it didn’t make any sense. Here he was speaking for publication, what if his friend stumbled onto a copy of the story?
“I don’t know why I haven’t told him,” he said again. “I’ve always said I don't want to harm my partners. I’m being stupid and ignorant, I’m angry at myself.”
What did it say about AIDS that it was easier for him to tell a stranger than someone he loved? It was plain his sense of well-being depended on thinking that he was in control of his life. Was withholding his condition a way of expressing anger he felt at ultimately having no control at all? He brushed away the amateur psychoanalysis. “It all stems down to not speaking out on what ought to be, what should be, what has to be,” he said firmly.
And still he was silent, criminally silent some might say; would the Oregon police consider an interviewer, or a counselor, or a friend who knew this HIV-positive teenager was having unprotected sex an accessory to murder? Was this young man’s silence monstrous? He didn't look old enough to be a monster, or capable of a deliberate intent to harm. What he looked like, in fact, was a kid struggling to come to terms with himself; a kid unable to reconcile sexuality and faith, unable to fathom the incomprehensible idea that he was going to die. Someone else will have to pretend to know what degree of judgment and condemnation is appropriate here, and then maybe they can address the moral failures and silences in government and society-the sins of omission that, where AIDS is concerned, are arguably as monstrous, if not more so, than this kids.
Many HIV positive adolescents being treated at Mt. Sinai and other places do not tell their partners of their status. For the professionals who care for them, this delinquency creates an ethical quandary not unlike the bind of the priest who hears the confession of a murderer.
“It’s the dilemma of the century for us,” said Dr. Berlin. “We have gay kids who don’t tell their partners, we have hemophiliac kids who don’t tell their girlfriends. We struggle with this on a daily basis, because what we want is to protect kids. We try to enlist the support of other therapists, the kids’ friends. In some instances we’ve gotten through, we bring the partner in, we make the phone calls. In some cases, frankly, we’ve lost the kid. They disappear. They go back into denial. They want to be normal like everyone else, they don’t want to feel like lepers. They can’t imagine they have something lethal inside them that could kill somebody else.”
Much of what passes for AIDS education does nothing except promote terror, equating the act of sex with death. How healthy can that be for society in the long run? What kind of adults will come out of that crucible, and what sort of children will they produce, assuming they can bring themselves to procreate? AIDS educators must ultimately help compact the process of becoming an adult, speed up the transition from adolescent innocence to grown-up responsibilities. If wisdom is knowing what you would do again differently, the poignant reality in the age of AIDS is that young people no longer have the luxury of mistakes.
Easily the most heartrending scene in S.T.A.R. Theater is a monologue written by an anonymous 19-year-old girl after she discovered that she did not have a second chance to correct an error. Troupe member Peggy Jo Brenneman performed it one afternoon in rehearsal, taking a moment to let the boisterous room quiet down before she began to speak:
“I was sitting by myself, and I kept thinking ‘What does all this mean?’ I was trying to imagine this virus and what was it doing inside me. Something innocent has been taken away from me, something deep inside of me that is never going to be the same. It’s like being stripped naked, not knowing whether to scream or cry, as you have your youth taken away. I can no longer be a reckless child, I have to be responsible about everything I do...People have actually said things to me like ‘Well you should have known better, what did you expect hanging around with those people.” All of a sudden my private life becomes public, people start asking me a million questions. ‘How many people did you sleep with? How many positions…?’ So I walk around with a secret inside me. I get so exhausted trying not to scare people when really I’m the one who’s so scared inside. Can you imagine what it feels like to be so young and not know whether you’re going to have a future?”
The small audience sat there for a moment in a stricken hush, the sorrow of all foreshortened lives summarized in one.