It is Hattie Lee Brown’s surprise retirement party. When she walks in, the lights blast on to reveal a sea of faces that light up when they see Hattie’s beaming face.
Music starts to play—“I’m Every Woman”—and bouquets pile into Hattie’s arms. A sash announcing Hattie Lee, First Retiree is draped across her shoulder. Hattie is sixty-eight years old; she’s been at ASCNYC for the last sixteen of those years. Hattie’s worked everything from reception to case management to data entry -- and now she’s ASCNYC’s first retiree.
It was 1996 when Hattie first stepped into the waiting room of ASCNYC. Back then, she wasn’t looking for a job—she was seeking help. Hattie remembers bright lights, a warm atmosphere, and Fulvia, the receptionist – now in upper management – greeting her with a kind smile. I’m never leaving here, she thought. They’re going to have to kick me out of that door.
Hattie learned she was HIV-positive in 1992. She took it as a death sentence. I’m dying, so what? she thought. I’m going out and getting high.
Hattie used drugs for seven years. As a child, Hattie had a vivid curiosity, a desire to experience everything life had to offer. Her mother once told her that experience was the best teacher, and she took that advice to heart. Unfortunately, Hattie’s curiosity led her to try heroin, eager to see what the fuss was about. She loved it. Her body relaxed and entered into a state of euphoria, shimmering in the air like a plane of light. Living in Harlem where she grew up, people were always coming in and out of her house to get high.
After a crack binge in 1992, she hyperventilated. With Hattie’s heart going twice its normal rate, everything outside of her body felt thick and slow. In this moment, Hattie thought she was going to die. She stood in the middle of the room, looked at the ceiling, searching for any remnants of clarity. She prayed, for the first time since her HIV diagnosis, for her life. Please God, she said, please Lord don’t take me now. If you let me live I swear I will never touch that stuff again in my life.
By August 1992, Hattie got clean. She never touched drugs again. She earned a business certificate and stayed sober. She knew it was time to start taking care of her health too, and so she decided to seek help. That was when she went to ASCNYC.
Over the next sixteen years later, Hattie returned the kindness and care that she received at ASCNYC. She started off like any other client, with a case manager who helped her stabilize her medical care and apply for the benefits that would sustain her recovery. She attended groups and eventually enrolled in Cycle 6 of the Peer Recovery Education Program (PREP). Soon after graduating, Hattie got a paid internship at ASCNYC as a Peer Educator. Eventually, the stability she achieved at ASCNYC encouraged Hattie to go to college, and at the age of 60, achieving stability and with ASCNYC’s support, Hattie went to college, and graduated with her Bachelors in liberal arts at the age of 64.
Hattie never felt a desire to go back to drugs, because being at ASCNYC provided all the excitement and euphoria I could ever want, she said.
At the retirement party, people clamor to tell Hattie the impact she’s made in their lives. Finally, Hattie’s son John gets up to speak. He affirms his mother’s two decades of sobriety, and he says how proud he is of her as a living example that it’s never too late to get a second chance to reclaim your life. “Seeing mom get clean and get her college degree in her sixties inspired me to continue going to medical school.”
As Hattie settles into retirement, her youthful joie de vivre shines through the wisdom and strength she’s gained over the years. Even as she ages, her energy seems to multiply. She plans to come back to the agency for educational groups so that she can keep up with developments in healthcare, and has already signed up for a work program for senior citizens.
It’s her party, and Hattie gets up and dances, moving like a girl in her twenties. Watching her feet skip and slide, it’s clear that the journey is far from over. If anything, it’s just begun.
Sean Strub is an activist, entrepreneur, writer, advocate for LGBT rights and for those living with HIV/AIDS; he is the founder of POZ Magazine, Mamm, Real Health, and Milford Magazine; he has put a giant condom over a congressman’s house as part of a protest and has also run for congress himself. He is an AIDS survivor of 25 years and an aficionado of historic preservation. He is Executive Director of the SERO Project, a non-profit advocacy organization combating HIV criminalization. And here at ASCNYC, we are proud to be honoring him as a “Positive Changemaker” at our Unmask AIDS gala.
Sean, where did you grow up? What was your family like?
I was born in Iowa City, Iowa, the third of six kids. We lived on a small acreage in the country, with sheep and horses, until I was nine years old, then we moved into a university neighborhood in Iowa City.
You came of age during the sixties and seventies. What was that era like for you?
The political assassinations of the 60s and the Vietnam War defined my childhood. When I was nine I was convinced that electing Eugene McCarthy as President (in 1968) was our only hope. I plastered my black Schwinn one-speed bicycle with blue and white McCarthy daisy stickers. That same year, I wore a black armband to school and got sent home by the principal. I would sneak out of the house at night to watch the student riots protesting the war, and refused to say the Pledge of Allegiance.
The first sense of communal political action I ever felt was singing “We Shall Overcome” during the November 15, 1968, Moratorium to End the War in Vietnam march.
My emerging political consciousness, in addition to the anti-war protests, was also influenced greatly by feminism and the fight for reproductive rights. I became active in campaigns for women running for office and developed a consciousness as a feminist long before I recognized myself as homosexual. It was during college that I first started getting interested in and involved in LGBT activism, especially after the 1979 March on Washington for LGBT rights.
You were in your twenties when the HIV epidemic started. Some people feel invincible at that age. Did the beginnings of the epidemic change that?
The first few years, 1981 to 1984, AIDS felt temporary, like it would go away any day once a cure was found. Then around 1984, I realized my life had been hijacked by the epidemic as I was absorbed into the community’s activism and advocacy. In my late teens and early twenties I was busy and doing interesting things, but didn’t have any kind of long-term plan or explicit ambition. I responded to what I felt I had to do, rather than what I might have wanted to do. I loved antiques and architecture and historic preservation; absent the epidemic I might have made a career in that kind of a field, although I’m sure I would have still been involved politically.
You were diagnosed with HIV in 1985. Was the diagnosis a surprise?
Not a surprise. I knew whatever this disease was that it had something to do with me from the beginning, when the five guys who died in Los Angeles were linked sexually. They had shared three initial symptoms—weight loss, swollen lymph glands and night sweats—that I was already experiencing. I got tested not long after the test came out and while it was expected in one way, it was still a shock and surprise. Most of my friends and family were supportive, but not all. There were some friends who dropped me and that hurt then. Still does. Lots of stigma and offensive incidents, but mostly those came from fear and ignorance rather than hatred or judgment.
It must have been unbearable to see so many people close to you die from the virus.
I’m not sure what it feels like not to be surrounded with constant loss. Since moving to New York in 1979, I’ve had six roommates; five are dead. I’ve lost two business partners and a dozen employees. The partner I expected to spend the rest of my life with died in 1988; an untold number of other boyfriends and acquaintances died. I couldn’t begin to count the number. People who were near the epicenter of the epidemic reacted in different ways, some were drawn to it and became activists and caregivers, others were repelled by it and went away, emotionally, sometimes physically.
Treatment for HIV didn’t appear until well after you were diagnosed. What was it like to go from dying of AIDS to living with AIDS? How did it change your work?
I was always living with AIDS, even when I didn’t expect to live much longer, so that didn’t really mark the difference. The difference was the expectations of a future. The tremendous sense of urgency that marked my life through the 80s and mid 90s, that I had to hurry up and achieve whatever it was that I was going to achieve on this earth quickly, before I died, went away and I became more accepting of each day, of the reality that we all have only a short time and that my life purpose isn’t to solve anything but simply to live it as best as I can.
You’ve said that HIV stigma is worse today than ever. How?
The “AIDS community” is not as cohesive or broad-based as it once was, so there isn’t as much support or as much of a loving embrace for those who are infected that there was once. The disease today is seen in much more racial terms and has exposed the racism inherent in the culture, including in the GLBT community. When people with AIDS were seen as the walking dead, there was some measure of sympathy. Today we are increasingly viewed solely or principally as viral vectors, potential infectors. Some people see our longer lifespan as meaning we’re around longer to infect others. The epidemic isn’t in the media as much and when it is, people with HIV are often depicted as predators, AIDS monsters or a drag on society.
Combating this image of “AIDS monsters” is the mission of the SERO Project, a nonprofit advocacy organization you started dedicated to battling HIV-related stigma surrounding HIV criminalization. Why was HIV criminalization implemented? Why is it wrong?
HIV specific criminal statutes were passed ostensibly to slow transmission of the virus, but the research shows they don’t do that and a growing body of research shows they actually contribute to further spread of HIV. It is wrong because creating a viral underclass in the law—with different criminal statutes for different parts of the population, based on immutable characteristics—is wrong, whether the immutable characteristic is based on gender, sex, race, genetic makeup or viral status.
It is also wrong because it is horrific public health policy, discouraging people from getting tested, disclosing or accessing care. You can’t be prosecuted if you don’t know your HIV status; so it has become “take the test and risk arrest”. Yet we know most new infections are transmitted by people who do not know they have HIV. Criminalization undercuts the most basic message about sexual health—that we all must ultimately be responsible for ourselves—by creating a disproportionate responsibility for safer sex and creating an illusion of safety for those who are negative or haven’t gotten tested. It also imposes a horrific injustice on those prosecuted. People with HIV are getting decades-long sentences for not disclosing even when they use condoms, have an undetectable viral load and don’t transmit HIV. It is an outrageous injustice.
You are also the founder of multiple magazines: POZ, Mamm, Real Health, and Milford Magazine. What motivated you to start your first magazine, POZ?
Everything in the media and popular culture defined AIDS as a death sentence, “inevitably fatal”, “dread disease”, “100% fatal”, “terminal illness”, “no hope for survival”, “without a cure”. While my life was immersed in loss, I was also surrounded by people with AIDS who were leading vital lives, falling in love and breaking up, getting promoted and starting businesses, loving relationships.
I wanted POZ to help people with HIV see the life they could live today, even while managing the burden and impositions and pain of a life-threatening illness. I also wanted to create the concept of an “AIDS survivor”, which was considered an oxymoron at the time. Yet a woman who lived five years past a breast cancer diagnosis was considered a “survivor”; how long did people with HIV have to live before they were considered survivors? That’s what we sought to accomplish with POZ.
You’ve done a lot of things in your life, from putting a condom over a senator’s house to owning a hotel to writing books. What are you most proud of?
The people I’ve helped mentor and create careers and better lives for themselves and others. I’m proud of the writers, editors, photographers and illustrators who created POZ. The resilience of people with HIV, most of whom must manage many burdens in life; HIV is just one on a hierarchy of oppressions, something those who are privileged often don’t understand.
Oh, so many things. But I think combating criminalization, and milder forms of stigma, is critical. We have wasted a lot of time and money on anti-stigma efforts that are ineffective; what we know works is empowerment of people with HIV and that’s where we need to return if we are serious about reducing HIV-related stigma.
On certain weekday evenings, the creaky metal gate of an old church in East Village opens to welcome a group of young men into a safe space. The men leave something at the door—a macho facade, a burden, or a natural stoniness against strangers—as they enter into the meeting room with tall windows that look out onto 9th Street. The high walls are painted, hung with photos and rainbow-colored drapes; by the door, multi-colored condoms spell out the year 2012.
At the front of the room is Franklin, a quiet guy who doesn’t seem so different from the rest of the people there, except that when he speaks, the hubbub of the room dims to silence. He was hired on earlier in the year as an mPowerment Trainer by ASCNYC to help run SWAG (Sexy With A Goal, an intervention for young men who have sex with men), the group that is meeting tonight. Tonight, Franklin announces, the topic is anger. The men start to talk, and Franklin sits back, only speaking up occasionally to guide the conversation and remind rowdier members to give others a turn.
It wasn’t so long ago that Franklin was sitting on the other side, a shy kid from the Deep South who was completely out of his element in New York City’s gay scene, but who had come to rely on SWAG for the few hours a week he could forget about his baggage and just be himself. Around the time he started going to SWAG, Franklin still felt like he didn’t belong at ASCNYC. He had fallen down on his luck, and was living with an abusive boyfriend when someone recommended the agency. The lobby had scared him, bursting with a colorful array of clients and loud personalities—he had never been comfortable in crowds, and he didn’t feel like he was supposed to be there.
Franklin had always felt different. As an infant with a heart murmur, Franklin’s parents kept him safe inside the house. He remembers his childhood staring out of the window in his farmhouse in Garfield, Georgia, watching the rest of his family work or play outside and wishing he could be there with them. Despite his mother’s careful precautions, however, there would be things that she was unable to save him from. When Franklin was four, a cousin staying with his family started to abuse him. The abuse continued daily until the cousin finally moved out—Franklin was eleven.
After his cousin left, Franklin turned inwards. Because of the abuse, Franklin had developed a roiling animosity towards all men, directed first and fervently at his father. He believed his father hated him—shy and small, he could never be “manly” like his father wanted him to be. Angry but not wanting to show it, Franklin stayed away from people, going on long walks through the woods with the dog, writing poetry, or playing country music in his room.
Then, around the time he was in the fourth grade, something strange happened. He had his first crush—on a boy. He couldn’t understand it, because for so long he had hated men. He started to hear the word “gay” used derogatively, but didn’t quite know what it meant. When he finally looked up the definition in the dictionary, the realization sunk into his stomach like a heavy stone: that was him. He was gay.
Please take this away from me.
Franklin prayed. He wrote letters to God, pleading, hoping that miraculously, he would wake up one morning to find that he was “normal.” Raised in a deeply religious family, he had been told since birth that being gay was a sin, that gays would end up in hell. He hurt himself, burning the hot metal shell of an old civil war bullet into his flesh, giving himself frostbite, rubbing his skin with an eraser until it hit the vein. Nothing worked—he was still gay—and soon it seemed that only option to escape his gayness was to end his life. He was sitting in his room holding a kitchen knife to his chest when his little brother accidentally barged in, and thankfully, stopped him from going further.
Ironically, it was when Franklin joined the military that he would start to become comfortable with his sexuality. Compared to Georgia, men in the military were openly and unabashedly gay. Franklin met his first boyfriend, a guy named John who would share fireguard duties with him, staying up all night and talking, not waking up the guards for the next shift so that they could spend more time together.
His parents found out about John when one night, Franklin's father saw him asleep in his bedroom with John's arms around him. He had left the army by then, and John had come to visit as a friend. That evening, a panic attack had come on and John had held him, like he always had, until they both fell asleep. The next time John came to visit, Franklin's father refused to let him see John. That was when everything came out—Franklin's childhood, his cousin, the abuse.
Though Franklin knew his father was a deeply religious man, he had also never seen him so angry. Franklin's life had been distorted and unalterably changed by his childhood abuse, but that night he defended his cousin against his father's anger, saying that he was just a child at the time who didn't know better.
Today, Franklin still forgives his cousin. He believes that when a person lashes out, it is because they are hurting inside. He does wonder how he would have turned out if all of that had never happened—perhaps he would be more outgoing, more relaxed, more eager to take advantage of his talents and skills. But he also wonders if he would be as empathetic or as strong a person as he is today. He is now able to take the obstacles of life in stride, knowing that nothing is insurmountable. Franklin relates to those around him, understanding that a vulnerable person could be hiding behind any type of exterior.
He is also finally starting to feel comfortable in his skin. He’s reconciled with his father, with God, with himself. He stuck with ASCNYC despite the initial discomfort. Going to SWAG every week not only gave him a safe space where he could be gay without judgment, it helped him come to terms with his own vulnerability. It was his friends at SWAG who supported him to leave his abusive boyfriend and become more involved in the agency. Franklin started to volunteer at ASCNYC. Seeing the good work that was done beyond SWAG, he completed the Peer Recovery Education Program and became a Peer. As a Peer, Franklin became the leader of the group that had saved him. He sends out SWAG alerts and initiated a “food for thought” section that summarizes the discussion of the previous meeting. When a staff position opened up, he was encouraged to apply. Though hesitant at first, he remembered everything he’d gained from the group, and got the job.
In the church on 9th Street, Franklin stands at the head of the group. The setting sun slants in through the windows as he reminds the members to be respectful of each other and the space. Because he is naturally soft spoken and reserved, some are surprised to see him so adamant and passionate at SWAG. “People need what we have here,” he says, his voice firm with certainty. Franklin, though small of stature, expands his quiet presence with SWAG beyond the tall ceilings of the room.
"I really feel like this is where I'm meant to be. I was meant to go through all the things I went through to be here."
- Ashley Johnson
It was another night in the city. Ashley was at the bar chatting up this guy who’d been eyeing her from across the room, and she could tell, easy, he was interested. She named her price. They agreed to meet up at a parking lot down the way.
She had moved back to the city from her mom’s place across the river in Jersey. The first time she ran away from home to live in New York City, her plan of getting a menial job and slowly working up was busted when she started seeing a man named Joe. Joe lived on the streets—he abused alcohol and he abused Ashley, but he was all she had in a city she didn’t know. When he was drunk, he ran into oncoming traffic and Ashley would have to pull him back and talk him out of it, hold his glasses when they fell onto the sidewalk. This time, Ashley knew better. She didn’t get straight A’s all through high school for nothing: if she could learn book smarts she could learn street smarts. She could depend on herself.
Sex work was a better way to survive than dealing drugs, Ashley thought, and she even enjoyed it in the beginning. The first time, she had strolled down 8th Avenue and easily picked up her first customer. She came back and did it again. She never used any substances, and since Joe just the smell of beer made her sick. Remembering how she used to have to sneak out under her mother’s watchful nose, she relished in her newfound independence. The work was hard and barely enough for food and a cheap hotel room, but it was all her own.
The parking lot was empty when she arrived. What Ashley didn’t know was that her client’s friend, who’d been peering suspiciously at her in the bar, had planted the idea in her client’s head that Ashley was a transgender male to female. He arrived at the lot with his friend carrying a bat, and swung hard into her side. Ashley crumpled onto the asphalt.
“You’re a guy,” the men yelled as they beat her with the bat and kicked her. She pleaded for them to stop; she promised she was a woman. To prove it, they used the bat to penetrate her. It was only when she was broken and bleeding that the men scared off and ran away.
But Ashley’s a girl—she looks like one, and any masculine features are due to Polycystic Ovary Syndrome (PCOS), a hormonal imbalance she’s had since birth. PCOS also increases her risk for obesity and diabetes, and makes it hard for her to have children. Her mother had it too, but they were never close enough to talk about these things. For a while after the assault she resented transgender women - not because she was intolerant - but because their lifestyle made her lifestyle hard.
It wasn’t the first time Ashley was assaulted. The other time was in New Jersey. On her way to school, a man came up behind her and grabbed her, tackled her to the ground and tried to rape her. Ashley was a big girl, so she fought him off, and instead of going to school headed to the police station to file a report. When she told her mother, the attempted rape was brushed off like it was her fault. Her mother had caught her going out at night to hook up with older men: because she was already sexually active, Ashley must have deserved it.
Her home in New Jersey didn’t feel like a home. When she was young, her mother worked hospital shifts at night and slept through much of the day. Her love was disciplinary: she made sure Ashley went to the right schools, played the right instruments, joined the right extracurricular activities, and contributed her part to the family’s survival. By the time she was eight, Ashley had learned to cook, clean, starch, and press; a year later, she was also changing her baby sister’s diapers, feeding and dressing her. There were never any men in the house, so she did the handy tasks too, pulling up carpet and putting down tiles.
Though grateful for the life skills, the truth was she felt neglected. She never had too many friends either—kids made fun of her for her early puberty and masculine traits, and besides she was too much of a smart kid, drowning in schoolwork and housework, to be popular. She had an aunt who was like a big sister, but she died suddenly when Ashley was thirteen. The aunt was only twenty-six herself. After her death, something broke in Ashley and in the family. Her mother and grandmother withdrew, and she started acting out. Home life became forced.
She never imagined she would find her family on the streets. Even while homeless, Ashley developed a support network of friends who looked out for her: in times of need they did little things like lend her soap or save her a seat in the soup kitchen. Most importantly, they understood the hardships of homelessness and hoped she would one day get off the streets. When she arrived in the city, Joe had shown her the ropes, introducing her to a constellation of soup kitchens, drop-in centers, churches, and community-based organizations. One of the first places he brought her was to ASCNYC.
As a sex worker, Ashley came back to ASCNYC regularly to restock on condoms and test for HIV. Being around the agency and attending groups, even if it was just to pass the time or get a Metro-card, had educated her on HIV-related medical issues and the importance of prevention. When she got into a relationship, she would come to ASCNYC with her boyfriend to get tested together. Time after time, the tests came back negative.
Ashley stopped doing sex work when she met Malcolm. They had felt an instant connection, and he asked her right away to be his girlfriend. He took her to live with him in his Single Room Occupancy (SRO). They started to talk about their dreams for the future, about getting married and having children. They didn’t use condoms because they wanted to have a baby. Ashley didn’t think it was a problem: she had taken him to ASCNYC near the beginning of their relationship, and they’d watched a video together about HIV and relationships. He was educated; he would tell her.
Malcolm didn’t want Ashley doing sex work, but he also didn’t want her talking to any other men. Eventually, he stopped her from going to ASCNYC, or anywhere else without him. She stayed locked up in his SRO—she wasn’t supposed to be there, so she had to keep a low profile—for most of the day, only sneaking to the bathroom when needed. The room was small and cramped, and she stared at the shrinking four walls daily while she wondered if Malcolm would come home. He was a recovering crack addict, but he also dealt drugs for extra income, and Ashley could never be sure that he’d return in one piece.
Perhaps she would have seen the warning signs if she’d been able to associate with other people. He had told her he was getting benefits from HASA (HIV/AIDS Services Administration), but he said it was for people with mental illnesses. He had diabetes, and though Ashley helped him take his insulin and pills, there were medications that he wouldn’t let her see, saying they were just vitamins that he would sell. Ashley had no reason not to believe him.
He began to lie to her in other ways. His father died and he relapsed. He didn’t make her sleep with anyone for drugs like another crack-addicted boyfriend had done, but he helped her sign up for welfare and stole her checks. He disappeared for days, coming back only to ask for money.
She left him. She found a room with a friend, started going back to ASCNYC. She was there one day, getting tested so that she could get a Metro-card. She knew something was wrong when the results took too long coming back. Finally, a Peer Liaison came in to give her the news.
Ashley didn’t panic. She was well educated because she had come to the agency so often, and she knew she wasn’t going to die. She knew she would get connected to a Case Manager right away, who would help her set up her doctor’s visits and assist with her housing search. She was angry, furious that after having sex with so many strangers, the one to infect her would be someone she loved and trusted in a monogamous relationship, but she accepted it. It was only when she stepped out of the counseling room and someone came to hug her, asking if she was okay, that she broke down in tears.
After finding out that she was positive, Ashley resolved to get back on her feet. She stayed away from sex work and what she described as “negative behavior.” She attended any groups she could to keep busy—women’s groups, creative writing, positive support groups, movie group—and enrolled in ASCNYC’s Peer Recovery Education Program (PREP). After graduating Valedictorian from PREP, she completed a Hepatitis training called HOPE and was brought on as a Peer. She went back to Jersey to repair her relationship with her mom. She moved into an apartment with an old friend she had run into coming to the agency a little bit before she started PREP, who she’d always had a crush on, and they started a loving, healthy relationship.
It’s hard to believe now, with the pieces falling into place, that there was ever a time when she was sleeping on trains, accepting sleeping bags from charities, stopping into public bathrooms to clean up, and strolling the streets for tricks. For Ashley, every step and fork in the path was worth the wear on her feet. That’s because now, as a Peer Educator, when she leads support groups for women through Honoring Everywoman’s Right to Safety (HERS), and facilitates Sisters Informing Sisters about Topics on AIDS (SISTA) interventions, or counsels women in abusive relationships and who are HIV positive, she can truly say that she understands. It’s the kind of support that she could never find in what she calls her “real blood family.” She continues to build her other family at ASCNYC every day through her work as a Peer. “My family is here at ASCNYC,” she says. “My home.”
*Some names have been changed for the purposes of confidentiality.
James Kingstan Wilson’s electric yellow hair and warm smile light up the desk where he sits, with a stack of files in his arms, ready to run from one task to another. Even before he graduated the Peer Recovery Education Program (PREP) in 2011, Kingstan was at the AIDS Service Center of NYC’s (ASCNYC) main office nearly every day, filing paperwork and asking for any work that needed help getting done. Now he’s a Peer Educator and Peer Consultant at the agency, an HIV Testing Specialist, supply clerk, group leader of Words of Wisdom, and Executive Officer of SWAG.
“I love to work,” Kingstan says, “so I stay busy.” He found ASCNYC when an agency client introduced him to SWAG (Sexy With A Goal, a program for young MSMs) in October of 2010, a few weeks after he moved to New York City. He had just finished serving in Iraq and Afghanistan, completed his Bachelors in Chemical Engineering, and was looking for a new adventure. He started working at McDonald’s Corporation, earning over seventy grand a year, but soon quit to volunteer full-time at ASCNYC. For the first time in his life, Kingstan felt like he was doing something that truly mattered. “This agency gave me so much,” he says, “and I feel like all of that precedes money.”
As a Peer, Kingstan reaches out to clients who come into the center worn by life and silenced by stigma. He counsels people on risky behaviors and harm reduction. He shares his story to give others courage. “I want to help the little guys out that don’t have a voice,” he explains.
The idea of having a voice is so important to Kingstan that he teaches it to his son, a seven-year-old with a tuft of curly hair and a contagious laugh like his father’s. “I’ll always ask my son his opinion on something, even though he’s a child,” he says. “I never will tell him, you have to do this because I said so.” Kingstan has seen too many people stripped of their voices. “If my son can exercise his voice now as a child,” he says, “when he gets older no one’s going to be able to take that from him.”
Kingstan’s own voice was stolen when he was five. It was in Chesapeake, Virginia; he lived in a small house with his mother, Debra, and two brothers. This was long before Debra got her nursing degree and pulled the family off of public assistance, before she settled down with Kingstan’s stepfather in a nice house and could afford to purchase her sons brand name sneakers. At the time, she was seeing a man named Robert.
Robert was on the couch watching TV, with Kingstan and his little brother lying on the floor, when Debra announced she was going to the store. The air was strange. Kingstan jumped up: something was telling him that he should go with his mother. He begged, he cried, he grabbed onto her legs, but she wouldn’t let him go. “What’s wrong?” she said, “I’ll be right back.” She left Kingstan sitting with his back against the door. That was when Robert told his little brother to go into the bedroom. He looked at Kingstan. “Do you want to play a game?” he asked. “It’s called Mr. Lollipop.”
Kingstan went numb. He watched himself as if outside his body, numb as Robert pulled out his penis, numb as he took him to the bedroom at the back of the house and undressed him, numb as Robert forced himself onto his girlfriend’s five-year-old son.
He must have heard Debra at the front door. Robert picked up a towel and turned on the water in the bathtub. “Get in the bath,” he said. “If you tell your mother anything, I’ll kill you and I’ll kill your mother.”
Kingstan didn’t doubt him. He had seen his mother’s black eyes and the finger-shaped bruises around her neck. Once he had come home from school to find Debra on the floor with arms flailing and Robert standing over her, his hands grasping her neck.
For more than two years, Robert molested him almost daily. It ended the day Robert was arrested. Kingstan was seven or eight then, trying to distract his little brother as SWAT teams surrounded their house and the blocks around it. He never asked what Robert had been charged with, just thankful that he was gone.
He was silent for fifteen years. He finally told his mother while deployed in Afghanistan. Their relationship had been rocky, and when he called her from six thousand miles away to confess, she was devastated. “Why didn’t you tell me?” she said. He said, “Ma, he was going to kill you.” Kingstan had never known his biological father, and so the thought of losing his mother was more terrifying than any abuse. He hid his pain with smiles and laughter—a mask that would become a fixture throughout his life.
When Kingstan started coming to ASCNYC, many at the center noticed his hard work. “It’s really admirable that you’re working in this field and you’re negative,” they would say, “You have such a passion for helping people who are positive.” Kingstan would nod and laugh along, his happy mask in place.
The truth was that he had been diagnosed with HIV over a year ago. He had developed strange lumps on his neck and face, abscesses the size of golf balls. At the hospital, they drained the pus and took some tests. One of them was for HIV.
It was stigma that silenced Kingstan this time. “People think, oh he’s dirty,” he says, “he must have been a drug dealer or he must have been a ho…he must have deserved it.” But Kingstan was none of these things. Shortly before going to Afghanistan he had fallen in love with a man named Jordan. They corresponded during his year in combat, and when he returned Jordan was there, waiting alongside Debra and his brothers. Kingstan picked up his life in Virginia to live with Jordan in North Carolina. Four and a half years later, he discovered that Jordan had been cheating on him with an ex-boyfriend. Still reeling from his heartbreak and recovering from a feeling of worthlessness, a year after he left his first love he discovered that Jordan had also infected him with HIV.
Once again, he told no one. He was close to finishing his Bachelors degree, and so he lost himself in work, pretending that nothing had changed. Even after he came to ASCNYC it was easier to put on his mask than to admit his status.
The mask was about more than just hiding: it was about staying strong and seeing the good in things. Kingstan remembers a time when his family had nowhere to sleep but their car. He woke up in the night to find tears streaming down his mother’s face. “I can’t even take care of my own children,” she’d said. Kingstan comforted her. “Mom, I don’t need much,” he said. “I like this, it’s like we’re on a camping trip.” At school, he put on his A-game, always working hard and trying to do the best he could. He wanted everyone to see that his mom was a good mother. His teachers noticed. His third-grade teacher said to him, “Well, you’re masked pretty well, young man.”
It became harder to pretend that all was well. He started to get sick more often, and it was beginning to affect his work. One day, Jane, an ASCNYC staff member who started out as a client, asked him why he was so sick all the time. After struggling to cover it up, Kingstan gave in. “I’m HIV positive,” he said.
Jane looked him in the eyes. “So this whole entire time,” she said, “you’ve been walking around here like your shit don’t stink. This has been affecting you in more ways than you know. It’s not just your health but mentally, this has been weighing so much on you. You need to start taking care of yourself.” She took his face in her hands. “Son, I’m telling you, this virus does not have you, you have this virus. And you’re going to live.”
Jane told him her story. Through the agency, she helped him connect to a doctor at St. Luke’s Hospital. She sat with him as he opened up his first lab results, explained to him the meaning of T-cell counts and Viral Load, helped him understand that even though he had a clinical AIDS diagnosis, it didn’t mean he was going to die. Not now, not if he didn’t want to.
Kingstan remembers the feel of Jane’s hands on his face, her voice alive with concern and compassion. He had been a part of the agency and seen its effect on people’s lives, but up until that moment he had never quite gotten it. “It was like I saw a light,” he said. “That day, I knew this agency was really a life-saver.”
There must have been at least fifty people in the room when Kingstan stepped up to the podium. It was ASCNYC’s fundraising meeting with Front Runners New York (FRNY), and they were looking for someone to tell their story. Kingstan had never spoken to more than two people at a time about his status, but remembering how hearing Jane’s story had helped him in his time of need, he agreed to tell his.
Though he still struggles occasionally to find the courage to speak, every new day at the center affirms his belief in the need for stories like his to be told. That day with FRNY, he felt like he took in a breath of fresh air. When people came up to him afterwards with open arms, thanking him, he realized that to hoard his testimony was to be selfish. Now he encourages others to share their stories in Words of Wisdom, the spiritual support group that he leads (he is also a minister). “There are so many people who are like me, who are paralyzed by stigma, and they hurt people because they don’t know any better,” he says. “It brings me pleasure to see them have their ‘aha’ moment.” And, just as Jane had helped him find his feet when he was struggling by sharing what she went through, he has helped mentees by sharing his own experiences. “If I can do it,” he once told a young man who, like himself, presented a tough exterior, “anybody can do it.”
Twenty-five years later, the mask is finally coming off. Kingstan’s learned that there are safe spaces where he can be himself at his most vulnerable. At the agency, he feels like people have seen him at his best and at his worst, at the lowest of his lows. Rather than judgment, weakness is met with concern, compassion, and love. “It’s the attitude of ok, you’re going through something,” he says, “but we’re going to dust you off and we’re going to get past this together.”
At ASCNYC, Kingstan has not only found his own voice, he’s also discovered his passion for advocacy, for passing on the gift of voice to the voiceless. One day he hopes to run for public office, fulfilling his childhood dream of being a politician and bringing this clamor to the ears of those in power. He looks out over the main floor of the office and points out the hallways and desks where someone has helped him or where he has helped someone, points out the people who have changed his life. He recalls seeing his mother look at him for the first time during a parent-teacher conference with her eyes full of pride. His heart was beaming. As he watches the people stream through ASCNYC—clients, peers, staff—his eyes overflow with that same look his mother gave him so many years ago, when he was just a little guy who hadn’t yet learned to speak.
*Some names have been changed for the purposes of confidentiality.