Historically in the fight against AIDS, services for women have not been as high a priority as those for men. Yet, women have been at risk all along. Fortunately for HIV-positive women, Iris House is one nonprofit that continues to care about the quality of life for HIV-positive women and their families.
Judge a book by its cover.
From the outside, Iris House is an unassuming, industrial-looking building in Spanish Harlem. Inside, there is a house full of compassion, laughter, activity, and love. Founded in 1991, through the help of the Manhattan Borough President's Office, Iris House was the first community organization dedicated to providing free services for HIV-positive women and their families. The goals of Iris House include supporting individual functioning, improving the health and quality of life of the participants, educating public officials about issues that affect women who are HIV-positive, and advocating for changes in policy that affect women living with the virus.
Marie St. Cyr, Executive Director of Iris House, explains: "The mission of Iris House is to give women the power to make decisions and change their lives. We are the support for these women. It's important that everyone who works with these women affirm their power and strength. When a woman decides to come to Iris House, she is making a decision that is bigger than herself. She is making a decision to confront her family and her community. Often, her decision is not only about helping herself, but also her children and her family."
Ms. St. Cyr came to Iris House as Executive Director in 1993, after working with the Human Rights Commission as Deputy Commissioner. Her experience in the AIDS field prompted the Board of Directors to her approach her: they were particularly impressed with her work focusing on discrimination issues. Ms. St. Cyr, a contemplative woman from Haiti, stops to think about the challenges facing her clients. "There has been an increase in clients. Many women and children now need our services. Currently, there are problems with welfare reform. I have to say that the level of service delivery is not equal to the need."
She believes that women are at increasing risk for HIV infection for a number of reasons. "Women are not receiving the prevention information that they should have received. There are also communication and cultural factors that result in their being the last to receive important information. What I have seen at Iris House is that there is an enormous effort among women to speak with other women and take comfort from supporting each other. It's an honor to work with the development of women's programs."
A proud and dedicated staff
Gloria Morales, Director of Social Services, has worked at Iris House for the last year and a half. "When I had the opportunity to work here, I chose Iris House because I found that the work was very rewarding. Since I began, I have seen an increase in the number of women that are living with HIV, women who come from all parts of New York. I always say that the women of Iris House are very strong and powerful because they have overcome difficult situations. It is a pleasure to see that after stabilizing, clients become community educators and are powers of example for other women living with the virus. This makes a big difference."
Sandra Matos, a young woman from Puerto Rico, is one of the child care workers. Like many of the staff at Iris House, she chose to work with women who are HIV-positive for personal reasons. "I have many friends and family members who have been affected by this disease. It is truly a pleasure to work here because I can support and dedicate myself to working with children and families with HIV. I like to help people and it is an honor to serve my community." Mayra Sanchez, secretary at Iris House, adds, "Of the five job offers that I had, I picked Iris House because I lost a cousin to AIDS two years ago. I knew nothing about AIDS, and I came here to become better informed, I am happy to be here with a staff who is focusing on and united around the mission of Iris House. Women always think that this (HIV) can't happen to them, and then they are the first to become infected and affected."
Frances Reteguiz, assistant to the Executive Director, also chose Iris House for personal reasons. Her sister died of AIDS in September of 1996, and many of her family members are currently living with HIV. She states, "There is still a problem in the community of not protecting yourself during sexual relations." Marie Martial, the soft-spoken cook from Haiti, adds, "I think that many women do not have access to protection, and out of ignorance, are not aware that HIV can happen to them."
Greg Loverde, another child-care worker, and one of the only men working at Iris House, explains, "This is the first job that I have had where I don't mind getting out of bed in the morning and coming to work because I like working with the children. As part of my job, I arrange special events for the kids, like going to the circus or baseball games."
Carla Basinait-Smith, who is in charge of the scattered site housing program, explains, "My experience at Iris House has been wonderful. It is the first place that I have worked where I believe in the mission of the organization. I appreciate the clients and the work that I do." Marie Martial, the cook at Iris House, adds, "Iris House has a caring and welcoming atmosphere; the staff that work here love the clients and want to help them in every way."
Jamila Matthews, who has always worked as an advocate with high-risk populations, has worked as a Case Manager at Iris House for the last two years. She is preparing for the one-year sobriety anniversary of one of her clients, Alice (Dell) Williams. "When I went shopping for the party, the salesgirl asked if it was my anniversary, and in a way, it is. When I tell people that I am a case manager for women living with HIV, they say 'How sad.' What they don't realize is that I meet women with energy that I admire, who teach me, and who I have a good time with. At times they give me advice. They inspire me. They help me as much as I help them. I see women living with the virus, not dying from it. They obtain jobs, start school, and it's very healing."
Alice (Dell) Williams became a client at Iris House after learning that she was HIV-positive. "I was out there. I was lost. After registering with Jamila Matthews, my case manager, I felt that I could receive the help I needed. People here were really supportive and they understood what was happening to me and my situation. It's been two years since I became a client. In those two years, I have seen many women arrive here feeling sad and leave her feeling much better. They receive help. The compassion here is enormous."
"I am a completely different person now than the woman I was before coming to Iris House. When I came here for the first time, I was still using drugs. Now I have a year clean of drugs and alcohol. I have a job and an apartment. Everything is thanks to Iris House and my efforts to help myself."
Dell is currently working as a peer educator in Spanish Harlem and Harlem. Her work takes her to health fairs, methadone treatment centers, and out in the street to conduct outreach. In her work, she meets many people who are still using drugs and are unaware of services that could help them. "The first thing that I would say to any woman with the virus is that she is actually living with, not dying from, the virus. If she has this attitude, she can live a long time. She doesn't have to feel inadequate for contracting the virus. Sometimes when women have it, they feel that they're no longer sexual beings, that society will judge them, and it's not true. There are many women who find it difficult to accept that they're positive. Now I try to talk with all of the women that I meet, especially the women that I meet in Narcotics Anonymous. The majority of them don't know what services are available to them."
The clients are all eager to share their experiences with other women who might be at risk for or living with HIV. Valerie, a new client at Iris House, says that her message for women is to "be strong, stay healthy, and look for places like Iris House. Use the resources that are available." Ada, another client, adds, "When people learn that they have HIV, they think that they're already dead. You're not dead, you're only dead if you don't do what you should do. You can do this. You can live with this virus." Most of the women have seen major changes in themselves and the other women at Iris House since they first became clients. Joining a support group is one of the key elements to improving one's sense of control and hope. As Charlene Hardy, who has been a client for the last nine months, explains, "Find a support group and learn how to live. Many times when we have the virus, we're waiting to die. You can live with this virus. Take medications or receive complimentary therapy. We have to learn to live again, to forgive ourselves for having contracted the virus, to stop using drugs and alcohol, to get help, and we'll be fine."
It's important to remember that this message of hope comes from a woman who recalls that she "...was very depressed. It had been ten years that I had known about my HIV status but had not accepted it. I needed a place to come to receive support, to be around other people, and to learn about the virus. My children also come to the program and the child care worker comes to our apartment every other week."
Ada, another client, explains: "I found out about Iris House through a friend that has since passed away. As soon as I came here, I fell in love, and I have been here ever since. During my time here, I received many peer educator training certificates, and I can give what I learned to others. There is always something to do here, and the staff always helps you to improve. It's a home away from home, and I like that."
A multi-service focus in the house
One of the many services that Iris House provides is a retreat for all the women of Iris House. Says one client, "We left that retreat very united, each one having learned more about the other, which is very difficult for African-American and Latina women. The retreat was very spiritual. Women shared secrets that they had been carrying around for years."
Jamila Matthews, case manager, explains that usually in the course of counseling, women learn that there has been some trauma in their past and that to protect themselves from these painful memories, they have suppressed or denied their experience. "I tell them that it is important to validate their pain. They hide their trauma in order to continue, to take care of their children, but I tell them that they need to recognize their pain and their feelings." The retreat provides a safe place to work through some of these experiences.
Scattered site housing is another service offered to Iris House clients. Carla Basquinait Smith is in charge of this program. It is administered through New York's Division of AIDS Services (DAS).
She explains: "We receive our referrals directly from DAS itself. There are twenty apartments: fifteen apartments for single people and five for families. After receiving a referral, we hold an interview to determine if a person is appropriate for the program, and we provide support: mental health counseling, drug and alcohol counseling, and referrals to outside agencies if necessary. It's a program of independent living. When we have an opening, we normally accept referrals on Wednesdays. It usually takes ten days to complete a referral. Three referrals are made for each available opening."
According to Carla, "If a client does not have benefits, we help her obtain benefits after she has her apartment. Clients who are already receiving benefits like SSI have to pay 30% of them towards the rent."
Women who are interested in becoming clients at Iris House can come without an appointment or call for an appointment with an intake worker. They will then be assigned to whatever services they may need: the nutrition program, support group, case management, etc.
The staff and clients of Iris House are all looking forward to the new building which will be ready in 1998. The new location will be on Seventh Avenue and 138th street. With more space, Iris House can provide even more services to a larger number of women and children. After all, the philosophy of Iris House is centered on the entire family. For more information about becoming a client, call Iris House directly at (212) 423-9193.
Back to the November 97 Issue of Body Positive Magazine.