When she was released from prison in 1994, Housing Works Inc., an AIDS organization in New York, hired her. It was there that she began her activist work and she calls it "the best work I have ever done." She not only supported people with HIV; she marched in New York City, Albany and Washington. But she was more than an activist.
A few years after she was released, she co-authored a book detailing how to set up an AIDS counseling and education program in prison similar to the one she had worked with at Bedford Hills. The book, called Breaking the Walls of Silence, was published in 1998. Prisons in many other states use its curriculum today. Windy was not finished. She decided that to do the work she wanted to do, she would need a degree. She got her B.A in 1999 and then her master's in social work in 2002. Windy has managed to help hundreds of people in her work and now that she's moved to Georgia, where she's working as a social worker, she's working hard to make changes there as well.
How long have you been working with people living with HIV?
I have been working with people with HIV since 1988.
Can you describe how your work has changed since you first started?
My work has changed a great deal compared to 1988. Today, I can find literature that addresses issues or questions about HIV/AIDS; 20 years ago I did not have a clue, and science did not understand the magnitude of HIV or AIDS. But the most important factor is that today people with this virus have rights and can make choices. They can live long healthy lives and they can also die with dignity. When I first started this work in prison many of my friends and peers suffered and were treated like animals; their lives were short and lonely. They had to confront ignorance, discrimination, stigma, lack of support and lack of medical information, making the process more difficult for those infected and affected.
In 2005, we people infected and affected still have to confront stigma and discrimination, but there are more supportive services in place and more laws to protect those infected.
There are more resources available and that makes a big difference. Also, collaboration between agencies allows the referral process to be faster and gives the clients options. In terms of ignorance and discrimination, we still have a long way to go, but it is much better than in 1980-1990.
If I were to follow you over the week, what would I see you do at work? Please give details of all the things you actually do.
I hold clinical sessions, organize trainings for staff and clients, facilitate groups, visit clients in the hospital, track clients for six months and then for the one-year assessment, research HIV/AIDS information for clients and staff, travel to other states to network and educate other providers and attend meetings. Sometimes I cook a meal for my clients and set up a table in my office and we talk about the future. I do pre- and post-test counseling and testing, prevention and education events at colleges and health fairs, collaborate with other provider events and escort my clients to the events. I facilitate a laughing therapy session for my team, anything that can help us relieve stress. I facilitate prevention and education groups in-house. I help clients move to a new apartment or visit the jail, if needed. I am presently organizing a donation campaign. If you decide to follow me for a week, please be ready -- I wear many hats. I have been called Speedy Gonzalez for a reason.
There are more resources available and that makes a big difference. Also, collaboration between agencies allows the referral process to be faster and gives the clients options. In terms of ignorance and discrimination, we still have a long way to go, but it is much better than in 1980-1990.
How did you end up in Georgia?
I moved to Georgia because my partner and I wanted a house that we could afford. Also my partner needed a warm environment because of her medical issues.
What are you doing there?
I work as a social worker for the IMANI Expansion Program at Integrated Life Center Duo Diagnosis In-Out Patient Treatment Facility. Also, I work as a consultant for Emory School of Medicine SEACTE ( Southeast AIDS Center for Training and Education).
Do you like it?
Some days I like it and some days I do not. It's pretty homophobic here. It has been a hard journey. Basically, I had to start all over again. In the South, what's important are connections -- who you know -- and if you are the new kid on the block, then it's going to be hard. My strategy has been to get to know the clients, provide good services and be consistent with my work. Once the client knows my work, everything will fall into place. After all, it is all about the people I serve.
Is it different working in the South than working in New York? How?
Yes, New York has so much and we should not take it for granted. In terms of information, interventions and programs, New York is 10 years ahead of the South. Please believe me when I tell you that people with HIV/AIDS in New York have so much compared to those in the South. In the South, people with HIV/AIDS who are prisoners do not have the rights they should. While in prison doing time, those prisoners with HIV/AIDS are segregated from the population. These prisoners are doubly punished just because they are ill. There is a lot of stigma and discrimination; they do not have a voice. I found out that a person with HIV/AIDS released from a prison here cannot apply for Medicaid or any type of assistance. They lose their right to federal government assistance forever. They can go to a free hospital. Twenty-five percent of the people I help have been formerly incarcerated.
What do you like most about your job?
The first thing I like about my job is that I am not being micromanaged. This allows me to be flexible and creative. The second thing is that I do not have an excessive caseload, which allows me to provide good quality services and more in-depth counseling with participants. The third is that I have an open-door policy in my office. Now who can do that in this day with all the demands of paperwork? The clients get appointments for their individual sessions, which provides structure. By the same token, they know that they can walk through the door at any time and not feel rejection or judgment. They know that the workers care, and this brings out the best in them. I am a firm believer that if I am treated with dignity and respect, then that is what I will give in return. Many of the clients start the day at the office, so it helps me observe their mood or affect and see if there is a need for intervention. The open-door policy has clinical advantages in terms of outreach to the client before a problem gets out of control. It gives me an early start. If I am not available, there is always someone at my office, whether it is the nurse or the peer support.
What's the worst thing about your job?
The worst thing about my job is having to deal with insensitive co-workers who pass judgment on clients. In my opinion, working in the field of HIV/AIDS is more than a job and a paycheck. Those that choose to work in this field must have compassion and treat clients with respect and dignity. I find that those people who mean help often forget the purpose of their work. HIV/AIDS is not about color, religion, lifestyle, wealth or looks, HIV is about a deadly virus that is rapidly spreading and causing suffering and pain to people all around the world. Too often those who are disenfranchised face stigma and discrimination by the same people who should be helping.
How did you get involved in addressing the needs of the women with HIV at Bedford Hills?
When the group started, I was invited to be part of it since I was the president of the Hispanic Committee and I was dealing with Latino issues. Also I was ignorant about HIV and did not understand the significance of the virus and what the women were going through. I became more aware about HIV/AIDS when I had to confront my own medical issues. The hospital refused to do a medical procedure that I needed while I was at Bedford Hills if I did not take the HIV test. I was forced to take the test if I wanted the procedure. It was not a choice and the process was not kind. Part of my denial came from the fact that I was lesbian, so I thought HIV did not apply to me. I was wrong! It applies to anyone who has sex. "You know about yourself, you do not know about your partner." Also I was ignorant and scared of the unknown. I took the test, but I brought a buddy with me to help deal with the results. During the time we waited, she shared with me whatever information she had about HIV.
What exactly did you do?
After my experience with testing, I was invited by the woman who was my buddy to attend the first Spanish workshop. My peer was Latina, born and raised in New York, so her Spanish was not that great. I attended with the purpose of participating in the first Spanish workshop on HIV, but I ended up running the workshops and later on translating all the materials to Spanish. I quit my afternoon program in the graphic department and landed a job at ACE as a Spanish outreach peer specialist. I was part of the cosmetology program in the morning and this particular group was my first target because no one wanted to cut the hair of the women who were presumed to have HIV. I challenged the women by having a person suspected of having HIV in my chair and cutting her hair. At that time, it was difficult because we did not have all the information, and the information seemed to change every day. My job at ACE included working as a case manager for inmates with HIV/AIDS in re-entry, official barber for the infirmary and the special housing unit, counselor on call 24 hours a day, and a facility interpreter and translator.
What exactly did the ACE program do?
The AIDS Counseling and Education Program was created by women in a New York State prison to meet the needs and fears that had developed with the AIDS epidemic. We believed that no women should be discriminated against or stigmatized, isolated and treated cruelly because they were ill. The program offered a supportive environment, peer counseling, a buddy program, a quilt project, medical interpreters (24 hours a day), case managers, a barber, IPC assistance (an infirmary), individual counseling, memorial services and family counseling. We received a state grant that allowed us to hire a civilian to make outside contact and to make phone calls and faxes, collect information and escort community-based organizations to come and educate us.
Can you talk about some of the women you cared for in the prison. What year was this, and what was it like to have HIV in jail?
I was not in a jail; I was serving my time in the only maximum-security facility in the state of New York. In 1991 I was the official barber for the infirmary and the special housing unit. I visited the ladies at the hospital once a week to do their hair and makeup. One of the ladies requested that I do her hair and makeup every week, (and) sometimes I would sneak in during the week for a second treat. She was so happy and glowing when I did her hair. No matter how sick she was, she was still so happy to have her hair done. The night before she passed away, I did her hair; the only thing I could think about was what she said to me every time I did her hair and makeup -- "I want to be pretty for heaven."
Tell me about the book you wrote.
I am co-author of Breaking the Walls of Silence: AIDS and Women in a New York State Maximum-Security Prison (The Overlook Press, 1998). This book introduced the AIDS Counseling and Education Program model, the history and struggles of women in a state prison facing the AIDS epidemic. It included the grassroots organizing efforts inside a prison and the obstacles or barriers encountered by the women in establishing a program to deal with HIV in a prison at a time in which society had only begun to learn about HIV. It also included many women's voices affected by this program. The book also presents the AIDS Counseling and Education curriculum, which many agencies around the country have used to start similar peer support programs.
What have been your greatest successes in your work? Greatest failures?
My greatest success is when a client who does not speak any English takes control of his or her life and ends up working right beside me. Or when one of my clients understands that he or she can make it -- that is, they are empowered -- and graduates as a certified peer support person and comes back to facilitate one of my groups. I always incorporate harm reduction in my practice; it helps me engage clients who are actively using IV drugs when they return on their own every week to get clean needles. If my clients come back for a second session, that is success for me.
My greatest failures are when I do not recognize that I need to take care of myself before I take care of anybody else. In 1996, I got heat exhaustion while working for Housing Works and I passed out and hurt my back, neck and head. Rather than taking care of myself, I continued to work. I never stopped working until the doctor told me I had a brain tumor. I worked in pain for a year and a half, and I was out a lot and I didn't take care of myself, so I could not be there for my patients. I eventually had to leave for two years because I had a brain tumor.
What did you do when you worked at Housing Works?
I worked as a scattered site case manager doing home visits and hospital visits; getting entitlements; organizing events for clients; and helping clients get housing, move into apartments and learn basic independent-living skills. I also advocated, worked as an activist and escorted clients to Albany and Washington to advocate for their own rights.
What kind of population did you work with?
Homeless people, substance abusers, gays, lesbians, transgendered people, children and families, blacks, whites, Latinos, all kinds of people from all walks of life.
What is the biggest challenge you face as a case manager/social worker? Would other people in your profession give a similar answer?
My biggest challenge is being able to keep a healthy balance in my life so I can be consistent with my work. I think many providers struggle with this issue. Providing care to people with HIV/AIDS is very demanding in terms of overwork, lack of resources and the political moods that affect services and resources for these people. This makes our job more frustrating and stressful. In many instances we get so involved that we forget to keep our balance.
Do you feel people walking into the clinic today feel less stigmatized by the disease?
No, there is a lot of stigma and discrimination.
What are the particular needs for young women with HIV?
Many lack working skills, education and housing. Plus, mostly, they have children and no child care.
What percentage of those who visit your clinic are immigrants?
Three percent are Latinos, with the majority coming from Mexico. I found out that many agencies get grants to reach out to Latinos, but they do not have the manpower to fulfill the demands. Therefore their efforts are not what they should be. There is a lot of turnover of Latino providers because they cannot keep up with the responsibilities. There is little time to provide good-quality services when you have 130 clients or more in your caseload and you are the only person who speaks Spanish.
Do you feel immigrants are more or less stigmatized by the disease?
They are more stigmatized and it is harder for them to get quality care.
From which community do they have greater difficulties getting support?
In the South, where I am now working, immigrants have difficulty getting support from everybody. Many people feel that immigrants take their jobs, others think that immigrants do not have the right to the American dream, and if they are here, at least they should speak English. The Latino community can be the most judgmental because they believe HIV/AIDS is a disgrace and a shame and "Only people that are bad get HIV."
For the most part, what do you think is the biggest risk factor for HIV?
In my opinion, the biggest risk factor is sex -- the lack of willingness to talk openly about sex and the miseducation in this society about what is normal versus what is deviant make prevention efforts fail. We should be able to openly talk about sex and how to protect ourselves. The clients know if we are uncomfortable -- how can I do a good job if I am not comfortable with myself? As providers we must be open and willing to talk about sex and openly explore sexuality issues and behaviors. In my office, I have a poster I put together with close-ups I found on the Internet of genitals infected with sexually transmitted diseases. It is located in an area in my office that everyone can see. Half of my battle is won if the clients lay their eyes on it. Society needs to be educated about sexual risk behavior. I think the approach should be blunt, with posters and advertisements that really talk about the issues. When I moved to Georgia 16 months ago, I heard people talking about being cured and undetectable viral loads, just like Magic Johnson. I could not believe it! I feel like people are minimizing this epidemic and holding on to false hopes.
What is the most important/memorable/useful thing you have learned from the people you work with?
This is an easy one -- I learned from my clients to take care of myself, although sometimes it is difficult, but I know that I want to be around for a long time and continue to do the work I love.
How do you maintain a positive outlook and avoid burning out?
First of all, I realize that I cannot save the world! What a relief! Second, I learned to work with my clients the way they are! What a relief! Finally, I love my work and that is a beautiful thing! I avoid burnout by taking care of myself, keeping boundaries between my work and my personal life, doing fun things with my friends and getting professional counseling. One of the things that helps me keep a positive outlook is that I see my interactions with each of my clients as a learning process for both of us. I do not perceive myself as above my client or as the expert; I respect my client's expertise. This attitude helps me be more relaxed and allows the client to be comfortable during our interactions.
If you weren't working as a caseworker, what would you be? Why?
Most likely I would have been a lawyer. That was my dream. I love to advocate for others and I like a good argument. I also feel that those without resources are not treated fairly and equally.
What do you think are the biggest problems people living with HIV face today?
The biggest problem is the lack of interest and education in the area of politics. Especially in the South, people with HIV/AIDS are not involved enough. They do not want to rock the boat. There are few agencies in the South encouraging people with HIV/AIDS to find their voice and to get involved in changing policies. It is extremely frustrating because those infected and affected do not understand the power of voting and the importance of challenging their political representatives. I was outraged when I moved to the South and found out that an individual infected with HIV/AIDS has to wait three or four months to get medical coverage! When I worked in New York, believe me, nobody would walk out of my office without medical coverage!
Is it easier to give care, for instance, for the uninsured?
No, it is not easy. For the uninsured, it is a frustrating, degrading process; there are long lines with overworked providers and, in many instances, shame and guilt are placed on this group.
Do you see a lot of women now? What are their lives like? What kind of services do they need that are different than the services men need?
I do not see many women. There is lot of shame, guilt and lack of support for women in the South. Many of them do not disclose their HIV status to their families, because they are afraid they would not understand. Some work very hard; sometimes they work two jobs to be able to support their families. I find that many of these women need day-care services for their children, gynecological help, housing, dental services and transportation. In many instances, these women do not have medical coverage, which makes it very difficult for them to get treatment. In many instances, these women do not make enough money to put a balanced meal on their table.
Do you work with any particular population of people? If so, can you describe it in detail?
My clients have a dual diagnosis of mental health and substance abuse issues, and they are also HIV positive.
My caseload is 85 percent African-American gay men with this dual diagnosis. According to my clients, religion plays a big role in their lives. Many of them have been raised by families that are extremely religious and would not accept or deal with homosexuality at all, making the process of disclosure difficult. In many instances, they will not disclose that they are HIV positive and so they face HIV/AIDS without family support. Another challenge is that many of them have been sexually molested as children or raped. Drug abuse is their escape from the pain and a way to deal with their feelings. Also, this triple diagnosis (mental illness, substance abuse and HIV/AIDS) is a challenge for many of my clients, specifically in the area of adherence to treatment. There is a great deal of mistrust toward treatment, especially as it relates to their mental health diagnosis.
Since you have worked in HIV from the very beginning, can you describe your experience in the initial years?
My experiences in the initial years were more filled with anger, frustration and sadness. My passion has been to build from those experiences. At that time, every prisoner was assumed to have HIV/AIDS. I will never forget when we were organizing a meeting and the list was stolen and every name on that list was identified as women with AIDS. Actually, the list had the names of the women who were organizing the event. It was stressful and nerve-racking, and we lived in fear that the program at any given time will be shut down by the powers that be. Although the superintendent was fully supportive of the work that was being done, she also had to face her boss and the unhappiness of the workers who could not understand why prisoners were allowed to do this kind of work. After all, prisoners do not deserve any special care. For us, every minute was crucial because we always worked as if it was our last day of work.
How did you deal with witnessing so many people dying?
I became a workaholic. I worked harder in understanding who I was, worked three jobs and volunteered for three more. I was on call 24 hours a day. I wrote poetry, knit, talked, cried and I had moments where I reflected. And in these moments of reflection, I began to understand politics and policies.
To whom would you dedicate this award to if you could?
I am dedicating this award to women who have passed away in correctional facilities across the country due to AIDS complications and to women who are incarcerated and are using their time to support those women infected with HIV.
Where did you grow up?
I was born and raised in Puerto Rico. My only memories of my mother, who died at the hands of her batterer, are of defending her as she was beaten. I grew up in San Juan, Puerto Rico. My family is originally from Fajardo, located on the east of the island.
What did you want to be when you were a kid?
I wanted to be a lawyer.
What kind of work did your parents do?
My mother passed away very young and I never really got to know my father. I grew up with my grandmother and later on went to live with an aunt. My aunt worked with a real estate agency for 25 years.
When did you decide you wanted to be a social worker?
I felt the need to pursue my education after working as a case manager and realizing that I always had to depend on somebody else to sign a document or to make services decisions and the person affected had to wait for weeks. I needed a certain amount of power to provide faster and better services. As a social worker, I could get an AIDS Drug Assistance Program (ADAP) application completed, signed and advocated with a doctor to get his part done as soon as possible. Why wait for someone else?
My major was community organizing with a minor in administration. My field of practice and specialization is community development, prevention and social justice. I am an award recipient for my field of practice (2002) and for community organizing (2001).
What other jobs have you had?
My first job was at the age of 11 and I tried to sell shoes. My job history includes being a cashier in a supermarket, a counselor, a claim examiner, an advocate, a barber, a graphic designer, a cook, a case manager, a social worker and a consultant.
What made you decide to do this kind of work?
I was affected by HIV/AIDS closely and personally. I have held many hands of women dying. Many of those women nurtured me and showed me by their courage that there was a better way to live my life. The memory of my friends, the women that died while incarcerated at Bedford Hills Correctional Facility and the loss of so many loved ones was the source of inspiration for me to choose the social work profession.
Who were the most influential people in your life, both professionally and personally?
The most influential people in my professional life are the founders of the ACE Program, a group of courageous women at Bedford Hills Correctional Facility in New York State. In 1985, these brave women felt the impact of HIV/AIDS and they chose to do something about it. They met illegally, they took chances that could terminate the little bit of freedom that is allowed to a prisoner, but they did not care. They knew their sisters were getting sick and dying and something needed to happen. They did something about it by creating the first program in the nation inside a prison to deal with the HIV/AIDS epidemic. These women were courageous, professional, compassionate and smart. Their most impressive quality was their sense of ethics. Yes, women in prison can have ethics. They never betrayed the trust and the rights of confidentiality placed on them by their peers. If they did not give up, then I can never give up fighting for what is right.
My partner of 17 years has influenced my personal life in many ways. She is a very special part of my life; her strength, peace, honesty and compassion feed me every day. She brings me up when I am down and she encourages me to continue when I am giving up . She never complains; she is my angel. She never asks for anything. She always tells me, "You can be whatever you want. Just do it."
What do you do in your spare time?
I am writing a book. I write poetry. I am helping to organize a homeowners' association and I do projects in the house -- painting, woodwork, etc.
What is your partner's job?
Cookie is disabled and retired. She is an HIV educator in her own right. She talks to people in the supermarket, the drugstore and to anybody she can get to listen. She bakes cakes and prepares all kinds of desserts for my client events. She always volunteers to help the clients.
Do you have pets?
We have two dogs -- Negrita, which means black little girl, a Labrador, who is eight years old, and Queenie, a seven-year-old Jack Russell.
Where do you live? What do you like/dislike about it?
I live in a suburban area. The community is quiet, clean and warm. The people are warm and friendly. There is not enough diversity.
If you could live somewhere else besides where you live now, where would it be?
I would move back to New York City.
What's the best vacation you ever had?
The best vacation was at Disney World and I was able to nurture the "child" in me.
What's the biggest adventure you ever had?
The best adventure was to go back to school after brain surgery at the age of 42 with a group of young energetic social work students.
What's currently on your bedside table for reading?
Harry Potter, ha, ha, ha.
What book would you say has had the most impact on you?
My favorite book of all time is Pedagogy of the Oppressed by Paulo Freire.
What kind of music do you like to listen to? Who are the artists you listen to the most?
I love rap! But I love music period. I like Jadakiss, Common and Tupac. I like their music because it talks about the struggle of young people in America and the reality of the streets, the devastation of drugs and the unfairness of a system that only works for some. Through this music, which clearly carries a message, I have learned so much about some of the people I serve. I'll never forget in 1994 I had a client with two teenagers, a daughter and a son, and I needed to engage them. Through the power of music, specifically rap, I was able to engage these two teenagers. I listen to all music and I collect CDs.
Is there anything else you think it would be important that people reading this interview know about you?
Please never take the people you serve for granted. They are the experts of their own life, and as service providers we are here to bring positive alternatives, help them take baby steps and facilitate their journeys. We must remember "Behavior is important. but the history of the individual is the essence."