A homecare worker with a ring through her nose greets me at the door to Ilka Tanya Payán's high-rise apartment in Manhattan's West Fifties. Payán is bustling around her bedroom, preparing for an afternoon in the AIDS clinic at St. Clare's Hospital, which services this mostly Latino neighborhood. Dressed in plain white slacks and a white knit top, however, with minimal jewelry and makeup, she looks as if she's on her way to a ladies lunch at Le Cirque. Green-tinted cat's-eye sunglasses with tiny rhinestones at the tips and a long green coat complete the ensemble. With matching handbag and shoes, Payán is ready to face her world.
She bears little resemblance to the auburn-haired spitfire who captured the media's attention in October of 1993 when she announced to a roomful of television cameras that she had AIDS. An outspoken activist, actress and lawyer, and a member of New York City's Human Rights Commission, Payán had no idea of the impact that her statement would make. The star of a popular telenovela, or Spanish-language soap opera, in the late 1980s, she had been characterized as Latin America's Susan Lucci. Her monologue about the issues facing Latina women had toured the Spanish-speaking world, and Payán had worked with many Spanish-speaking theater companies. Remarkably, she had also been a successful immigration lawyer who wrote a weekly column on immigration issues for El Diario/La Prensa, the largest Spanish-language daily in the United States, and had started a successful program at Gay Men's Health Crisis (GMHC) to help immigrants with AIDS.
The woman who had made that announcement, which ran as the lead item on all the New York City news programs, conveyed a sense of feistiness as she talked about her decision to come out about her illness. Surrounded by her daughter and members of her community, she was a pillar of strength. A month later Payán was invited to be one of the speakers at the annual United Nations World AIDS Day Symposium. Resplendent in a purple brocade evening gown, her hair flowing around her shoulders, Payán gave a lectern-pounding speech which shook the crowd up and once again garnered all of the media attention. "I am here today because I look beautiful," she declared angrily at one point, "but I am not the real face of AIDS. AIDS is an ugly and terrible disease." Looking back on the incident now, Payán says that the speech was written to be delivered in calm measured tones. She laughs, recalling, "I delivered it with draaama. But you know, I was sitting there with all of these celebrities and VIPs, and no one had any anger or sense of urgency [about AIDS]. It made me so mad that when I got up to read it, I just wanted to shake them all, to say, 'Look, people are dying!'"
The person walking next to me today, however, is quiet and restrained. Her frailty shows through on the street, like she's a bird out of its nest. Glimmers of her former persona come through, though, when she tells me about going to a wedding shower for her niece. "I've lost about 25 pounds," she says. "I wore this little Chinese embroidered jacket and sat around posing all afternoon, like a model in Harper's Bazaar. But I do miss my butt. I had a beautiful butt -- I'll show you pictures, really -- but now it's gone." About six months after her announcement, Payán had her first opportunistic infection, and since then has been through a nightmare round of PCP, MAC and streptococcal pneumonia. She has been hospitalized for three long stays, the memories of which still make her shudder. How does she feel, I wonder, now that she looks like a person with AIDS? "I remind myself that I am still me," she says. "Besides, think of all the clothes I can fit into now."
The Cardinal Spellman AIDS Pavilion is a cramped collection of rooms gerrymandered together in St. Clare's Hospital. One has to walk through parts of the clinic to get to the waiting room, where a television set blares daytime talk shows full of drama and conflict. Most of the patients are young Latino men and women, some with babies. Payán puts on a surgical mask and hands me one. We look like aliens, and I find it hard to breathe. "I never take chances anymore," she says, "I don't care what people think. I need to protect myself." A woman recognizes her from the telenovela, and she is polite and gracious. She asks her shrink if I can sit in on their session. "I want you to see everything," she says, patting my hand.
Payán has 30 minutes for therapy, down from 45 because of recent Medicare cutbacks, and she makes the most of her time. She tells him about a recent panic attack after she misplaced her Prozac for several days, and he explains that it doesn't stop working that fast. "I woke up on Sunday with this pain, this emotional pain which started in my stomach and seemed to permeate my entire body. I was immobilized by it," she tells the analyst. She talks about the problems that her daughter is having with denial, and about feeling deserted by her ex-husband, with whom she is still close, because he is moving to San Antonio. "My daughter is always there for me in a crisis, but she's not around on an everyday basis. It's as if she doesn't want to get too attached to me, because then it'll hurt less when I'm gone." Yet, despite the pain she is describing -- the emotional issues surrounding her disease, especially with her family -- Payán is laughing and flirting with her therapist.
There are several paintings on the wall of her living room, each of which depicts a solitary thatched house surrounded by lush greenery and animals in the bright colors of the Caribbean. "That's my dream house," she says, "It's like the place where I used to spend my summers, before I came to New York." Ilka Tanya Payán was born in the Dominican Republic in 1943. Her father was a doctor, her mother an engineering student who gave up her studies for him. When her mother died in childbirth two years later, Payán's life became shrouded in tragedy. "My grandmother raised my two sisters and I," she says quietly. "She hated my father for what he had supposedly done to my mother. She wore black for the rest of her life, and treated us as her daughters." Payán's father had three wives and three mistresses, producing no less than 17 children, all of whom know each other. Her grandmother supported the three little girls by baking pastries, running a milk distribution center and distributing lottery tickets. "My grandmother would never walk down the same side of the street as the hospital where my mother died," she recalls, "And, to this day, I have never been to my mother's grave or my grandmother's. There was a constant denial of the reality of death."
A precocious child, Payán performed in local festivals and says that she looked like a bride at her first communion. When she was 12, a 19-year-old boy fell in love with her, and her family, hysterical at the prospect, shipped her to New York City to live with her mother's relatives. Even as outgoing as she was, Payán was not well-prepared for the move. "All I knew about America was what I had seen in comic books about the malt shop," she says. Payán found herself in the upper Manhattan neighborhood of Washington Heights, which today has a large Dominican population. "But in those days there were three Dominican families. There were a lot of Jews and Irish, and some Cubans -- but they weren't even from Cuba." Payán was a long way from the thatched house of her youthful summers: "All of a sudden, I was on this rock, and I hated it."
Surrounded by her mother's family, she led a heavily chaperoned life where girls were expected to do what their families wanted. "I received an education that was inferior to what I would have had back home, and became a secretary," she says. "I tried to go back [to the Dominican Republic] in the early '60s, and married into a wealthy family. That's when my daughter Gigi was born. But I couldn't fit into that life. I found myself not really belonging in either place, but I came back to New York." Payán returned to the tumult of the civil rights movement, a time when members of all ethnic groups were attempting to discover their roots. "I joined a Spanish theater company run by a Cuban exile because I didn't want to lose the language," she says. "I had no intention of becoming a star, it was all about acting." Payán honed her craft as a dramatic actress, working with several Spanish language companies and doing commercials on Spanish language television to pay the bills.
In 1976 she was tapped to appear in a television series called Roosevelt and Truman with Michael Keaton and Phillip Michael Thomas. The show was canceled after one episode, but Payán stayed in Los Angeles, playing the actress game. It was only by accident that she became a lawyer. After stopping in at The People's College of Law, which had been founded in the wake of the Watts riots, to inquire about Hispanic-themed theater, she found out about a program which sent minority applicants through law school to help their communities. She enrolled. While attending law school she worked with the San Francisco Mime Troupe, juggling her tour schedule with classes. She returned to New York in 1981 with her law degree and the intention of taking over a small struggling theater company with her best friend, Puerto Rican poet Victor Fragoso. But Victor greeted her with the news that he had the "gay cancer," as AIDS was then known.
Unlike many of us, Ilka Tanya Payán knows where and from whom she got AIDS. "The night that Victor told me, I went to the annual Puerto Rican festival, and I smoked too much, drank too much, and I met this man who was a poet," she says. "He was tough and wiry looking, attractive to me, but really when I think back on it I was in a state of shock. My daughter and Victor hated him immediately, which should have told me something. Anyway, a few months later, I discovered that he was an IV drug user, and the sexual part of our relationship ended, although we remained friends." Victor died in early 1982 and it was at his funeral in Puerto Rico that Ilka met his nephew, 16 years her junior, who would become her second husband. She brought him back to New York, where he had trouble fitting into her life.
The law was a booming distraction from her failing marriage. Payán had opened up her own law practice to provide services to the huge number of undocumented aliens who wanted to take advantage of the immigration amnesty offered by the U.S. government in the mid 1980s. Then, when another actor friend became ill with AIDS, Payán's thoughts turned to the poet she had met the night Victor told her about his "gay cancer." She had suspicions about her own health status and decided to take the HIV test in 1986. Her suspicions were quickly confirmed: "The doctor called me, and he wouldn't tell me the results over the phone, so I knew." She went to his office anyway. "He told me, ‘You have five years to live; relax and make your will.' There was no counseling, no intervention, nothing. I don't know how I got home." While she was with the doctor, her actor friend with AIDS had gone to his Santería priest. His diagnosis for Payán was different. "The spirit told him that I would not die of AIDS," she laughs. "I don't know if that means that I'm gonna get hit by a bus or what."
It wouldn't be the first time. In 1987 when Angelica, Mi Vida, the first Spanish-language soap opera created for the American market, was being developed, Payán was preoccupied with her law practice. Still, when a mutual friend recommended that the telenovela's producers consider casting Payán in a small "art imitates life" role as an immigration lawyer, she made time to meet with them. The meeting went well enough that the producers requested a copy of Payán's reel -- videotape of her in previous roles. But then Payán heard nothing. As the weeks without word stretched into months, thoughts of Angelica, Mi Vida left her head until, six months later, a phone call came from out of the blue telling Payán what she already knew: She had not been cast as the immigration lawyer. Imagine her surprise, then, when Angelica's producers instead offered her the part of Carmen Delia, a major character in the soap with a plum role to play in its plot: Super bitch. "The soap had an incredibly convoluted plot, but everyone remembers Carmen. She was truly evil. That's why people loved her," Payán says.
Payán instantly became a big star in the Spanish speaking world. Perhaps she should have been happy, but she wasn't. When the telenovela finished filming, she once again had to confront her life. "Here I was divorced, HIV positive, I felt like I would never have a relationship again." She began going to Body Positive meetings with a friend and delved into the works of spiritualist Louise Hay, as well as a host of natural practitioners. "I am here today because I refused to believe the doctors. But I learned that the only moment is now," she says. "We all want to blame someone for the stuff we didn't do, and no one knows what the future will bring."
She became a volunteer lawyer for GMHC, starting a program to help immigrants with HIV which eventually received Ryan White CARE Act funding, working closely with agencies like New York City's Department of AIDS Services (DAS) along the way. "Agencies like DAS and GMHC came out of white gay middle-class activism because those are the people who know how to function in the system. And there's nothing wrong with that. If this had been a disease which started with women, nothing would have been done," she says. Despite criticisms of GMHC within the community, Payán says that it is still the best agency out there. I ask if it was strange becoming a client of these agencies after being so involved on the other side. "It was easier because everyone knew me, and when I applied to DAS I went to the head of the agency, with whom I'd worked very closely. But otherwise I have been very conscious of not asking for favors. I wait in line for my subway tokens like everyone else. I don't want to take advantage of the system because then how will I know what everyone else is going through?"
Family has always been an important part of her life, and Payán's public announcement of her HIV status caused unforeseen problems which linger to this day. "I had already planned the press conference when I made the mistake of telling an actor friend who was on his way back to the Dominican Republic, and he told the newspapers there and all of a sudden it was on the front page before I could explain things to my family," she says. "My sisters called me, furious. One of my brothers is a general in the army and they said it would affect his position. They asked me to call off the press conference. One of them even said to me, 'Well, it's better if this is just a rumor, because then we can deny it.' Well, I didn't want to deny it!" Although Payán still speaks to her sisters, they do not talk about what she calls "the incident," and has not been to their homes since. "They are concerned about me and ask about my health," she says. "It's just too painful to bring up, so I don't."
The past year has been "the worst time of my life," she says. "My first hospital stay coincided with a story that [abc's]Day One did about me, and I had a little party in the lounge at the hospital. I had Mexican food and arrived late in my kimono with makeup on. But by the second stay I wanted to die. Each time there came a point where I thought I was going to die and begged God to let me die. And he didn't." When the ambulance came to get her the last time, Payán -- cracking a fever of 104.5° -- put a red jacket on, thinking that it would convince the doctors that she was healthy enough to stay out of the hospital. "I avoided accepting the fact that I was sick for a long time, and the knowledge that I might never act again brought a terrible depression," she says. Her mental state lasted for many months. Finally, Payán started taking Prozac. It kicked. "One day I was cleaning out my closet," she remembers, "and realized that I was humming a song. For the first time in a year I was singing!"
She continues. "I gave up the law. That was easy. I don't know if I will ever act professionally again and refuse to think about it. But I have not given up being an AIDS activist." Despite her status as an AIDS celebrity, however, Payán refuses to be the personification of anything. "Words are very important," she insists. "I am Ilka Tanya Payán, not the disease -- I repeat this over and over. I am not going to be treated like I am unique because I have this disease. You know for all of this talk about us being an elite, we're like the citizens of the Village of the Damned. Larry Kramer is absolutely right, this is a holocaust and it is genocide. AIDS is a political issue."
Ilka Tanya Payán is sitting in her living room as the sun sets over the Hudson River, holding a handwritten journal in her hands. It has been a rough week. On Monday she again tested positive for MAC, which means going back on the drugs she hates, and Payán has been fighting with her doctor again. "Sometimes you rebel at the expense of your own sanity and you begin to wonder whether the doctors are right. I'm not sure how long this one is going to last," she says. Despite this recent bout of ill health, she has attended the wedding of her niece, handled a host of visiting relatives, was photographed for the cover of this magazine and appeared on a closed circuit television program in the New York City school system.
Payán smiles as she reads the entries she has begun to jot down about the wild soap opera that is her life. "I'm trying to figure out how to do this," she says. "I want to write a book about my life, my family and my grandmother. I want to write about not really belonging anywhere, because I've never considered myself an American, and yet when I go back to the Dominican Republic they call me americana."
Sitting with her journal, as the sinking sun's rays bounce off the Hudson toward the island she currently calls home, Payán is also making plans for the future. She's departing for a one-week stay in the Dominican Republic, where she will be filmed for a nationally televised special about her life. Then it's on to Puerto Rico, where she is raising funds for an AIDS hospice. But, most of all, when Payán's thoughts turn to the future, they turn to Ilka's Angels, a group of young Latina women who have been inspired by her message to start an activist group around women's health issues. "It's kind of like a combination of the Black Panthers, the Young Lords and ACT UP," she says. "Older people tend to create institutions which ignore the young, and they are the ones who must deal with these problems, hopefully with a new approach."
Payán's own approach is to inspire the group, but she refuses to direct it. She views her role now as an activator. "My job is to try and activate people's heads, and the way that I do this is by saying health is a political issue. Then it's up to them to do whatever with the information. Everyone wants a strong leader, but I want all of them to become leaders, because if you look for one individual to lead you're going to fall flat on your ass."