Project Hope is part of the supportive counseling services of the Special Treatment and Research Program ("STAR"), 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 they wouldn't be re-funded, 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 made the group members realize how much 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 re-funded. 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.
A Home Away from Home
"Eighteen months ago when I found out I had HIV, 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 forties. "This group is my home away from home. We can talk about stress and depression. We love our group -- it's a safe haven."
During 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.
Gracie confessed her naiveté when she first found out she had HIV in 1991. "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," she said. "Now I don't drink, I don't get high. Here I can express my feelings. Nobody in my family has HIV."
Such was not the case with Altamease, who matter-of-factly informed the group, "My five brothers died of AIDS." With horrifying swiftness, they all died between 1991 and 1993.
Sidney, a quiet man with a dry wit, revealed how he distrusted people after he found out about his status. A deacon in his church, jealous that Sidney could speak in tongues, told other parishioners Sidney had HIV. "I agreed to come to group, 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."
Hot Topics and Helpful Advice
Sidney railed against the stereotypes that people with HIV come in contact with every day. "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." He was able to discuss that pain with the group, then resolve the issue with his family. "It's sort of like Narcotics Anonymous," he said, referring to the 12-step program, "but it's our own group."
"I haven't disclosed to my family yet," said Nefertiti, a young woman who wore a stylish hat and kept on her sunglasses indoors. Though a four-year veteran of the group, Nefertiti didn't say much, but listened intently to the conversation.
Quite 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 a 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.
"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'll find it and relay the information. Many people don't take the time to do that."
Honorary Cross-dressing Man
Simon is quick to point out that it's not all problems. "We have fun here, too." He went on to recount how he didn't know what pelvic inflammatory disease -- a common gynecological problem -- was, and how the group humorously educated him.
Margo St. John, a facilitator for the group, is also the target of good-natured barbs. "I run both the men's and the women's groups," she said. "The men accept me, but they tell me that I'm an 'honorary cross-dressing man.' "
Issues like sexuality are also addressed by the group. "At first, I wasn't 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," concurred Gracie. "I learned about gays from Simon and I'm more tolerant, and Simon accepts me as a female."
Drugs are also discussed, as evidenced by Altamease, who spoke of 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."
Sidney commented on the potential problems a shutdown of the group would have caused. "A lot of people here would have problems going to support groups in Manhattan. There are mothers and grandmothers here who have to pick up kids. There are sick people who can't handle the stress of the trains."
The sheer size of other support groups was another turn off. "I went to this one group and they said to me, 'Hey, sit over here.' We were in a circle of 200 people."
Many of the adults in the support groups have battled drug and alcohol addiction. "I think that if our group shut down, some members would start getting high again," said Sidney.
"Only Crazy People Need Therapists"
Margo is also the assistant coordinator of the adult support program. 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, discovering in the process that most other support groups were connected to a larger program or were for very specific populations. "At other groups, the 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 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 who make up the STAR Program.
As a native of Grenada, Margo has noticed 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're begging and tend not to seek proper services because they think they aren't entitled." West Indians also have problems with therapy and counseling. "The idea is that only a crazy person would see a therapist."
Shame is also a factor; many West Indians tend to keep HIV a secret from their families. Therefore, the group becomes their main system of release.
Fighting Isolation and Finding Strength
Amanda is from a small African country that has been torn apart by civil war. She and her two-year-old son showed up at the office, dressed in their Sunday best. She handed him an apple as she sat down to be interviewed. The boy was beautiful, with shining brown eyes and a winning smile that clearly he inherited from his mother.
Amanda came to the United States four years ago with her one-year-old child to be with her husband, who is from the same country. It was then she found out she was HIV-positive. Constant strife with her husband makes her life very difficult, as does her sense of isolation caused by a lack of family here and very few people from her native country. But inside the group it's different. "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." Twice when she was admitted to the hospital she had nothing with her, and group members came through with necessities like underwear and toothbrushes.
"In my group," said Amanda, briefly showing her brilliant smile, "sometimes we're happy and sometimes we cry. When you sit in the house with nothing to do, you don't know where you're going. When you go back to group, it makes you feel strong. I don't feel comfortable in Brooklyn. I feel most comfortable in the STAR Program and at this hospital."
Going to the group in the hospital has enabled Amanda to coordinate medical visits there as well. In the support program, she has also discussed the difficult topic of who will care for her two children in the event she can't.
Talk of the Teens
Sheila Crandles is the social worker who supervises both the adult and adolescent support group programs under the STAR Project. The support groups started in 1988, with a group for the caregivers of children with HIV. 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 re-funded was that the members helped do it themselves -- they traveled long distances to hearings in Harlem and they wrote letters," said Crandles. The lobbying of two 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 a 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," explained Marianne Gunther, program coordinator of Project Hope and a licensed art therapist. "Art therapy provides the kids with another medium to express their emotions." For example, using shadow puppet techniques, the teens 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," Marianne said.
There's also the Homework Program which consists of help with homework and games for kids nine to seventeen. "We do some homework, if we're lucky," Marianne admits with a laugh.
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, with topics ranging 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'm glad to get that off my chest."
Aaron, a tall, sensitive 16 year old from Bushwick says, "I don't feel alone with Teen Talk." Both his parents are HIV-positive and he has been attending the group for three years. He talked of how frustrated he was with his mother, "She's always in bed and she doesn't have any energy."
Gradually the group picks up speed and becomes more animated. Mike, a teenager who wears his hat turned backwards, smiled and, shooting a look at Verne, an 18-year-old girl who is the group elder, said, "What we talk about depends on how honest some people are."
Verne took the jab in stride. "We talk about music, fashion, AIDS."
"We talk a lot about killing and fighting people," said Richard, a gangly wool-hatted youth.
"Some of us exaggerate, and we know who they are," needled Mike, whose statement was met with some good-natured laughter.
Twelve-year-old Darnell spoke of how Verne was like a sister to him, "Sometimes she chases me."
It was Aaron who brought up one of the more pressing questions facing teenage boys today: Should he continue to pay for his girlfriend on dates, even if he's now broke? His parents gave him some money, but he has spent it all on her.
Verne responded, "Sometimes I want to pay for myself. Other times, he'd better pay."
"Teenagers relate better to other teenagers," observed Gillian Williams, one of the adult facilitators of Teen Talk, who sees herself as a combination of referee and mediator who keeps the group going. "The group has really grown together in the past two years. There's a definite pecking order, though. Older members get more respect."
She and the other counselors follow up on individual teenagers who may be in crisis. "In our group, there are real extremes -- kids with psychiatric diagnoses and some pretty well-adjusted kids." For example, one teen group member was thrown out of junior high school for hitting a teacher; another attends a prestigious Brooklyn high school.
According to Gillian, the family situation of the teenagers varies on a case-by-case basis: about half have no other relatives they can live with. The counselors have talked to some of the parents about permanency planning, and what will happen if the parent dies.
Project Hope keeps Lydia off the rough streets of Cypress Hill, where she lives. She usually shows up on all three days of the teen groups, and sometimes shows up on the other days to talk to the counselors. "My friends say they understand, but they don't. Their parents aren't sick."
Aaron underscores the devastating effect the denial of funding would have caused. "For two years before I came to group, I told no one about my problems. 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."
To contact the Brooklyn Group Support Project call (718) 270-2758. To contact Project Hope call (718) 270-3284 or 3285.