A Support Group Thrives in Brooklyn
"If I wasn't in the group, I would be having fights on the street," said Lydia, a fresh-faced 12-year-old who belongs to Project Hope, a Brooklyn support group for teenagers whose parents have HIV. "I was getting arrested all the time. People would step up to me and I would have to fight."
Project Hope is part of the supportive counseling services of the Special Treatment and Research [STAR] Program, an HIV clinical and research project run out of the State University of New York at Downstate in Flatbush. The program runs 10 support groups, serving 250 Brooklyn residents living with HIV, as well as adolescents who have family members with HIV. These HIV support groups are the main source of HIV groups in north and central Brooklyn, including East New York, Bushwick and Brownsville.
The support groups have been funded by federal Ryan White Title I monies totaling $240,000 a year for the past eight years. Along with 24 other Brooklyn AIDS projects, the project was told in November that they would not be refunded, effectively shutting down all 10 support groups.
The prospect of the groups being shut down was a shock to its members. Clients signed petitions in support of the program, wrote their local politicians and spoke at hearings on Ryan White funding. The threats to end the funding brought the group members face to face with what their support groups meant to them, as well as the value of their fellow members in their newly formed communities.
Fortunately, an additional $5 million in Ryan White Title I funds were found in late January. Out of this money, Project Hope and the Brooklyn Group Support Project, the adult support program, were refunded. Though the crisis has passed, the men, women and teenagers who make up the program had a lot to say about their support groups. This is their story.
"When I found out I had HIV 18 months ago, I thought I was going to die soon, I thought I should take a lot of drugs and call it a day," said Altamease Whetstone, a plain-spoken woman in her 40s. "This group is my home away form home. We can talk about stress and depression. We love our group - it is a safe haven."
In a roundtable discussion in a nondescript conference room at SUNY Downstate, Altamease and four other members of the Tuesday co-ed support group bared their feelings. In turns serious and humorous, the members explained how they survive HIV and gain strength from each other.
"I look to the future positively after being in this group," said Simon, a former property manager of Indian descent. Simon tested positive in July 1996, and lost his lover of 10 years several months later. "If I wasn't here, I'd be staring at two walls in my apartment," he said with a faint smile.
"I was very naive when I found out I had HIV in 1991," said Gracie. "I was visiting my boyfriend in the hospital, he had TB. Somebody said to me, 'You know, this is an AIDS ward.' I never went back.
"When I was diagnosed, I was still getting high," said Gracie. "Now I don't drink, I don't get high. Here I can express my feelings. Nobody in my family has HIV."
"My five brothers died of AIDS," said Altamease matter-of-factly. With horrifying effect, her brothers all died in the early 1990s.
"I distrusted people," said Sidney, a quiet man with a dry wit, after he found out his status. Sidney said that a deacon in his church was jealous ofthe fact Sidney could speak in tongues, so he told other parishioners that Sidney had HIV.
"I agreed to come to group," said Sidney, "and I get to know a bit about each person. I still don't talk that much in group, but I've been sober for four months now."
Railing against HIV Stereotypes
Sidney railed against the stereotypes that people with HIV come in contact with everyday. "I eat at my family's house and I wash my own dishes. Then they wash them over again. It hurts when your own mother does that." Sidney said that he was able to bring that pain to group, discuss it, then resolve the issue with his family. "It is sort of like Narcotics Anonymous," referring to the 12-step program, "but it is our own group."
"I haven't disclosed to my family yet," said Nefertiti, a young woman who wore a stylish hat and kept her sunglasses on indoors. A four-year veteran of the group, Nefertiti didn't say much, but kept a watchful eye on the conversation.
Very often, the group's collective wisdom about living with HIV and dealing with the social service bureaucracy is priceless. "The people in this group gave me good information on housing," said Gracie, who is presently staying at a women's shelter while she looks for permanent place to live. Recently, one advocacy group was offering apartments. "The members told me that I had to show up at 7 a.m. and that only 13 people were taken a day," she said. They gave me the information that I needed."
"Margo and Cathy are good for information too," said Altamease of the two staff members who run the group. "If they don't know something, they will find it and relay the information. Many people don't take the time to do that."
"You know, it's not all problems," said Simon. "We have fun here, too." Simon recounted how he didn't know what common gynecological problem, pelvic inflammatory disease [P.I.D.], was, and how with much humor the group educated him.
Honorary Cross-Dressing Man
Margo St. John, a facilitator for the group, also is the target of barbs. "I run both the men's and the women's groups," she said. "The men accept me, but they tell me that I am an 'honorary cross-dressing man.'" The members broke out laughing at Margo's comment.
The group also addresses issues like sexuality. "At first, I was not comfortable coming out as a gay man to the other members," said Simon. "Now I feel accepted sexually."
"In the group, everybody respects each other," said Gracie. "I learned about gays from Simon and I am more tolerant, and Simon accepts me as a female."
At one point, Altamease addressed her old heroin habit. "I'd made myself a pin cushion long enough, so I went on methadone maintenance." Several years ago, she kicked her heroin habit and kicked out her drug-using boyfriend when he wouldn't quit.
"I look at the world differently now... I want to do something constructive." Old associates still invite Altamease to get high, but she has no time for them. "I spend time watching my grandchildren...I've got 15 of them and I love them all. I don't consider myself sick," she said of her HIV. "Sick is lying in a hospital bed."
"A lot of people here would have problems going to support groups in Manhattan," said Sidney, of the possibility that the group was going to be shut down. "There are mothers and grandmothers here that have to pick up kids. There are sick people who can't handle the stress of the trains."
For Sidney, the sheer size of other support groups was a turn off. "I went to this one group, you see. They said to me, 'Hey, sit over here.' We were in a circle of 200 people."
"For me with a new group, I would have to start all over," said Sidney. "I don't think I would open up again. I think that if our group shut down, some members would start getting high again." Many of the adults in the support groups have battled drug and alcohol addiction.
"Only Crazy People Need Therapists"
Margo is also the assistant coordinator of the adult support programs. She said that when the groups seemed doomed in the fall, she scrambled to make a list of alternative programs for people with HIV in Brooklyn and Manhattan. Margo found that most other support groups were connected to a larger program or were for very specific populations.
"At other groups, there services are often linked -- you might have to see the program's therapist. Our program is just group support -- you don't have to commit to a clinic or to other parts of a program."
In the list of other programs that Margo compiled, there are specific HIV support groups for gays and lesbians, ex-offenders and Latinos. Very few support groups seemed to meet the broader needs of the Brooklyn African Americans and West Indians that make up the STAR Program.
Margo, a native of Grenada, has noticed that there are some cultural differences in the way West Indians and African Americans address their HIV status. "I find West Indians to be more trusting and there is more shame when it comes to looking for help -- they think they are begging. They tend not to seek proper services because they think they are not entitled." West Indians also have problems with therapy and counseling. "The idea is that only a crazy person would see a therapist.
"There is a lot of shame --West Indians tend not to tell there family members. HIV is a total secret. Their main release becomes the group."
Amanda is from a small African country that has been torn apart by civil war. She showed up at the office with her two-year-old son in tow. She handed him an apple and sat down to be interviewed. The boy was beautiful, with shining brown eyes and a winning smile that he has gotten from his mother. Amanda and her boy were dressed in their Sunday best.
"I've been in the women's group for two years," she said. "It really keeps me going on with my life. I know I am not alone."
Fighting Isolation and Finding Strength
Amanda came to the United States four years ago with her year-old first child to be with her husband, who is from the same country. She found out then she was HIV positive. Her life is made very difficult by constant strife with her husband. Amanda is isolated outside the group because she has no family here and there very few people from her home country in Brooklyn.
"I've been admitted to the hospital twice. Both times I had nothing, but people from my group came with necessities like underwear and a toothbrush," said Amanda.
"Mom!" said her son suddenly. He handed her the apple, she turned it over and he started chewing on the other side. "In my group," said Amanda, briefly showing her brilliant smile, "sometimes we are happy and sometimes we are crying. Other times everyone is confused if someone is in pain.
"When you sit in the house with nothing to do, you don't know where you are going. When you go back to group, it makes you feel strong."
By going to the group in the hospital, Amanda has been able to coordinate medical visits there as well. In the support program, she has also discussed her options of who will care for her two children if she can't.
"I don't feel comfortable in Brooklyn," she said. "I feel most comfortable in the Star Program and at this hospital."
Sheila Crandles is the social worker who supervises both the adult and adolescent support group programs that are under the STAR Project. "The support groups started in 1988, with a group for the caregivers of children with HIV," said Crandles. More groups were added as needed, including two groups in Creole, men's and women's groups, a co-ed group and Project Hope, the program for teenagers.
"The best thing about the group being refunded was that the members helped do it themselves -- they traveled long distances to hearings in Harlem, the wrote letters," said Crandles. The loobying of wo Brooklyn politicians -- Congressman Ed Townes and State Assemblyman Vito Lopez - were essential in restoring funding to the support groups.
Project Hope consists of three different afternoon programs-Teen Talk, Art Therapy and the Homework Group and has core group of 12 adolescent members. "We meet in the student lounge of the [ Downstate] medical school, so there is no stigma on the kids," said Marianne Gunther, a licensed art therapist and the program coordinator of Project Hope.
"Art therapy provides the kids with another medium to express their emotions," she said.
Recently, using shadow puppet techniques, the kids in art therapy made a video, a kind of "Star Wars" tale, where a young man was fighting evil. "In the end, it turns out that the boy's mother is sick," said Marianne.
The Homework Program consists of help with homework and games for kids nine to 17. "We do some homework, if we are lucky," chuckled Marianne.
Rough Banter and Feelings
On a recent Tuesday, seven teenagers got together for Teen Talk with two adult facilitators. The kids range in age from 12 to 18 years old. Cookies and juice were passed around and the conversation started flying. Topics range from a parent's health to music to dating.
"In this group, I can talk about how my father gets on my nerves," said Taline, a 13-year-old who often comes to group with her sister. "I am glad to get that off my chest."
"I don't feel alone with Teen Talk," said Aaron, a tall, sensitive 16-year-old from Bushwick. Both his parents are HIV positive and he has been attending the group for three years. He talked of the frustration he has with his mother, "She's always in bed and she doesn't have any energy."
The group picks up speed and gets more animated. Mike, a teenager with his hat turned backwards, talked of the group's social element. "We take trips to Great Adventure and have parties."
Mike smiled. "What we talk about depends on how honest SOME people are," shooting a look at Verne, an 18-year-old girl who is the group elder.
Verne took his jab in stride. "We talk about music, fashion, AIDS."
"Or racism and discrimination," said Taline.
"We talk a lot about killing and fighting people," said Richard, a gangly youth wearing a wool hat.
"Some of us EXAGGERATE, and we know who they are," said Mike. The laughter was good-natured.
"Verne is like a sister to me," said 12-year-old Darnell. "Sometimes she chases me."
Aaron asked one of the most important questions of the end of the 20th century: should he continue to pay for his girlfriend on dates, even if he is now broke? His parents gave him some money, but he has spent it all on her.
"Well," said Verne, "sometimes I want to pay for myself," talking of her own dating. "Other times, he better pay."
Teenagers relate better to other teenagers," said Gillian Williams, one of the adult facilitators of Teen Talk. "I'm a combination of a referee and a mediator. I keep the group going."
"The group has really grown together in the past two years," she said. "There is a definite pecking order, though, with the older members commanding more respect." Gillian said that she and the other counselors follow up on individual teenagers who may be in crisis.
"In our group, there are real extremes -- there are kids with psychiatric diagnoses and some pretty well-adjusted kids." Gillian said that one kid was thrown out of junior high school for hitting a teacher, while another kid goes to a prestigious Brooklyn high school.
The family situation of the teenagers is on a case-by-case basis, said Gillian. "About half have no other relatives they can live with." The counselors have talked to some of the parents about permanency planning, what happens if the parent dies. "Some parents have not told their families they have HIV," she said.
For Lydia, Project Hope keeps her off the rough streets of Cypress Hill, where she lives. She usually shows up to all three days of the teen groups, and sometimes she shows up on the other days to talk to the counselors. "My friends say they understand, but they don't. Their parents are not sick."
"For two years before I came to group, I told no one about my problems," said Aaron. "I think if I wasn't here, I would have committed suicide. I know my life doesn't suck. I don't feel like my life is cursed anymore."
