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How I Revolutionized My Understanding Of Life With HIV

Shannon

By Shannon Finucane

It’s not all popping mollies and slurping sizzurp for the post-antiretroviral-cocktail generation. HIV remains a significant threat to public health. Yet it no longer occupies the same place in our culture when it did 20 years ago. I am a member of the generation born at the height of the HIV/AIDS epidemic that is now reaching adulthood. Most of us are aware of the virus, but it was something we had to arbitrarily learn about in school, the same as having to memorize the four bases of DNA. It was never something we truly got to understand from a human perspective.

I remember vividly the annual high school assemblies with World War II vets recounting the scene as they freed concentration camps. I was never able to personally experience other significant parts of 20th century history. By failing to create a personal dialogue about HIV/AIDS and the people who are still living with it, my early schooling aided the stereotypical perceptions of the virus and made me feel immune.

That changed for me this summer during my fellowship at GMHC, the world’s oldest HIV/AIDS prevention and service organization. Until the first day on the job, I had never met someone who was HIV-positive. Some may conceptualize HIV as just another chronic illness, but I quickly learned that it is much more complex. This disease has taken the lives of millions and continues to do so today. However, the faces of those infected are no longer iconic images of emaciated white gay men. HIV knows no boundaries. It affects all racial and age groups—from grandmothers to the young adults I met at GMHC who are my peers in the same age range.

During my fellowship, I participated in the Action Center and Outstanding Beautiful Brothers (OBB) programs. Both revolutionized my understanding of HIV. These programs provide group meetings, which are critical resources for people at elevated risk of infection or who are already HIV-positive. At the meetings participants discuss the challenges they encounter on a daily basis and create life-saving social support networks. The honesty and openness of the participants allowed me to learn about the true challenges they face staying alive.

I also attended weekly Action Center meetings just for women, which turned a small conference room into a hotbed of conversation and structured discussion about current public policy issues. These meetings are also a critical resource where GMHC clients shared employment opportunities and how to navigate the often cumbersome network of social services for people living with HIV/AIDS. Long-term survivors who have participated for years are the matriarchs of the group and there are also newly-infected woman attending for the first time.

My first women’s Action Center meeting was intimidating because I had no idea what to expect. Yet the women were welcoming and enthusiastic to share their lives with each other—and me. I will never forget their stories. One participant discussed how she mistook early signs of HIV for hot flashes, only to learn her unexpected diagnosis from her doctor. Another vented her frustration about how hard it is to find affordable housing. Most talked proudly about their families, their grandchildren’s birthdays, and their children’s college graduations, just like women in my own life.

These women revolutionized my understanding of what living with HIV is actually like for far too many who are also forced to deal with significant life challenges, such as living at or below poverty level, fear of disclosing HIV status to family members, healing from domestic abuse—and more.

Another key experience was my afternoon attending a meeting of participants in OBB. I sat down in a room full of young men my own age. Many reminded me of my friends and college classmates. The only difference was that they sought out support services at GMHC.

I attended the meeting so I could document the role OBB played in their lives. Unexpectedly, I left reflecting on the significant challenges some of my peers face every day. Many were excited to have their voices heard and they all reinforced the vital importance of the program.

One young man shared that OBB became his family when his own wouldn’t support him. Another broke down as he shared his attempt to get infected intentionally as a solution to the difficulties in his own life. He believed that becoming positive would help him secure stable housing after he had to move away from his unsupportive family. His situation is just one example of the epidemic of homelessness and hopelessness among LGBT youth, contributing factors to increased HIV infection rates among young people of color. However, it was not until he participated in OBB that he heard the down side of being positive. His OBB brothers became his support network and helped him through his difficulties. Other members in the group shared how inspirational his story was and that it motivated them to join OBB.

Hearing their stories made me reevaluate everything I thought I knew about HIV. If people like them had talked to me in high school, my perception of the virus would have been totally different.

Thousands of my peers under the age of 30, particularly young gay and bisexual men of color, are becoming infected at alarming rates. In fact, young adults in my generation are now among those most vulnerable to new HIV infection. The reasons are complicated.

However, based on my recent experiences I realized we are not being adequately educated about HIV, and in the age of the sequester our access to critical services like HIV testing and effective prevention programming continues to decrease.

To help fight the epidemic, individuals who are HIV positive should be embraced as vital agents of change. By sharing their journeys they can facilitate therapeutic outlets for everyone with HIV. They could also be powerful tools in prevention education that demystify HIV and shed light on the many faces of today’s epidemic.

The most important lesson I learned from my time at GMHC is summed up by one client’s sincere statement, “our illness is not all we are.” This reality was missing from my school health textbooks. It is of vital importance for everyone to remember.

Shannon Finucane is a Jeannette K. Watson Fellow who interned at GMHC during the summer of 2013. She is a student at The City College of New York. Her article was originally posted on The New Civil Rights Movement on August 17.

Where Has All the HIV Funding Gone?

Janet Weinberg I am outraged. We all knew sequestration was coming, but most people really did not know what those words meant. For GMHC's clients it means cuts to the food that they need in order to take their medicine. It means less support for mental health and substance abuse to deal with the very issues that were part of the reason that they are living with HIV and AIDS. It means cuts to the staff who are here to assist clients to secure benefits so that they can take their medicine, go to doctors and potentially not infect others because their medicine is working so well.

These cuts were already severe enough during recent years as HIV funding has dwindled. Many do not understand why we actually need more funding to accomplish the president's goal of an AIDS-free next generation. But alas, just when we thought we'd seen the last of this year's cuts, we got hit even harder.

In early August, every organization in New York that has Ryan White funding (which was specifically set up to take care of people with HIV) was hit with a cut of about 15 percent. Why it was cut is the most unbelievable part of this story. The Health Resources and Services Administration (HRSA), which is the primary federal agency for improving access to health care services for people who are uninsured, isolated, or medically vulnerable, made a formulaic error in New York's funding during 2010, 2011 and 2012. In dealing with their own error, HRSA decided to take back $18 million in funding to AIDS service organizations in New York. All I know is that when I make a math error, I usually am stuck dealing with the consequences.

Who is paying for the consequences here? That would be our clients. Ironically, Ryan White funding is the funder of last resort. This means that the person who is eligible to receive services provided by Ryan White funding are not eligible for public or private insurance. To quote Felix Lopez, GMHC's Legal Services Director, "If Ryan White were alive today, he would not be entitled to services under Ryan White funding." The clients we see under Ryan White are often living on $12 per day after rent and utilities are paid for. It is these very clients who are hurt the most by this terrible decision. What does 15 percent in cuts mean to GMHC, and of course our clients, you might ask? Well, it means a lot. Here is what this latest onslaught has done:

These cuts are profound. Did our legislators fall asleep at the wheel? How could they allow HRSA to collect on their math error during a year of already deep cuts? I am baffled.

Where were HRSA, our senators and Congress people when I had to stand before some of the most amazing and resilient people to tell them about why we had to cut their services, how services were cut, and what they could no longer count on? I also had to explain that every AIDS service organization is suffering with these cuts. Our clients wanted to know what they should do about this. How can they help GMHC stop the cuts? These very same clients saw that I was close to tears when I had to tell them that we had less food to offer.

When I walked out of the room, several clients followed me. They stopped me to ask, "How can we support you?" The fullness of generosity, kindness and love from our clients never fails to amaze me. How lucky I am to work with GMHC's clients who are worried about me when each one of them just received another undeserved harsh blow!

So I ask our elected officials, "When will you ever learn?"

Stephanie Valerie's Courageous Testimony at the Opening Ceremony of the 28th Annual AIDS Walk New York

Stephanie

Good morning. My name is Stephanie Valerie and I am honored to be here. May tends to be a difficult month for me. Mother’s Day reminds me of my mother and my daughter, both of whom I’ve lost. And on May 1, 1997, I found out I was HIV-positive.

When I heard the news about my HIV status, I was devastated. I wanted to die. Thankfully, I called a friend and she told me about GMHC. The staff gave me some wonderful information.

At that point, I knew I needed to tell my mother and my son about being HIV positive. And my mother said to my son, “Listen to me from now on. You don’t have to listen to your mother anymore because she will be dead soon.”

My self-esteem plummeted. I was so desperate to be loved, I made some unfortunate and unhealthy decisions. In 2011, I returned to GMHC and became a client. GMHC became my home. I started going to the support groups.

I joined the Action Center where I have learned about the public policy issues affecting people living with HIV and AIDS. Now I go to meetings and share my story with elected officials and their staff. And with the support of GMHC and a twelve-step program, I have been clean for 14 years.

Last year, I became homeless. GMHC helped me find supportive group housing. Now, I am in my own apartment and it is a wonderful feeling to put the key in my own door. My life has changed dramatically. Today is not a sad day for me. It is a coming out day for me. By speaking to you, I am doing something that I thought would never be possible: I am walking with my head up, held high.

And I want you to know my son, Shad, is here. He flew here from Chicago to be with me on this incredible day. I have gone through a lot with my son about my HIV status. But now, he is my biggest supporter. We will be walking together. As you walk today, please know that I am so grateful for your help. I love GMHC. Thank you very much.

Looking Ahead to the 23rd Latex Ball and Remembering My First House Mother, Avis Pendavis

BY LUNA ORTIZ

As we approach the date for the 23rd Latex Ball, I remember how I got started in the House and Ballroom community. I remember and cherish the legacy of my first house mother, Avis Pendavis. Back around Thanksgiving, 1988, I was hanging out with youth from the Institute for the Protection of Lesbian and Gay Youth (now known as the Hetrick-Martin Institute). We were eating, talking and getting to know each other, and I saw some of the youth vogueing. I became really excited and wanted to try it myself. I met Avis that night, and she changed my life. She invited me over to her house a week later, and brought me into the House and Ballroom community, making me a member of the House of Pendavis--one of the most distinguished and legendary houses around. Avis was just an incredible person. She was determined that her kids would succeed. She wanted her house children to finish school and get jobs, to protect themselves and be as healthy as possible; rather than focusing solely on winning prizes at the balls. I am so lucky to have had her as my house mother. She made me into the person I am today and was the architect of my approach to empowering my house children.

One of the programs that Avis was most passionate about was the Latex Project. She talked about going to meetings downtown. Only later did I learn these were the initial planning meetings with GMHC to create the Latex Project, which spawned both the House of Latex and the Latex Ball. In those days, GMHC was the only agency working on HIV and AIDS in the House and Ballroom scene – though there was always controversy. Some people in the community saw GMHC as an agency that catered to gay white men, and not to youth of color. The project helped change the perception of who GMHC served – the Latex Ball assured people that “we matter” and that GMHC cares.

As a youth, the Latex Project gave me a sense that I could do something for my community. Volunteering with GMHC gave me the opportunity to be more outspoken. I started as a peer educator, helping with the Latex Ball, and eventually became a member of staff at the agency. GMHC empowered me and let me become someone that people, from all over the country, could come to when they learn their HIV. My story is out there and Latex made me a beacon. Together we work to make the community healthier. As a result of the Latex Project and the Latex Ball, more people in the House and Ballroom community know about HIV and AIDS – what is safe and what is not. We do not preach at people, we share with them how to be safer and take better care of themselves. People listen to us more when we use this approach.

As I became more active in the community, and more active in the Latex Project, I competed in categories and became “Legendary.” I walked in the schoolboy category in my first ball in 1990, then moved on to Drag, Face and Drag, Runway, finally finding myself in Butch Queen Face. When my beloved mother Avis died in 1995, I formally joined the House of Latex, where Arbert, my new House mother, and Torrence, my new House father, helped me grow. My mentor and gay father, Hector Xtravaganza recruited me over to his House in 1997, and I continued to compete. I moved from Xtravaganza to the House of Blahnik for 4 years, and then was approached by Trevon Khan about opening a NYC Chapter of the House of Khan. I finally became a house mother myself, and am still active, having served as the Overall Father of the House of Khan, and now as the Grandfather of the House of Khan. I’ve also been inducted in the Ballroom Hall of Fame; both my gay parents Avis and Hector are Hall of Famers. The ballroom scene is about traditions, family and love.

What makes the Latex Ball special? First and foremost it is inclusion of health education and HIV testing, which remains free (to people attending the ball, or by coming by GMHC during our normal business hours). When the Latex Project was created, it started out as distributing information at different balls, which was important as the scene lacked information on HIV. We wanted to change that. When we formed the House of Latex, the members of the house were no longer just peer educators attending a ball, where people did not always know them, and they had little role. As members of the Ballroom community, they were now active participants in the balls. The Latex members walked categories, normalizing the fact that they were there, and made them more approachable.

The health fair at our Latex Ball is one of the most important parts – connecting members of the House and Ballroom community to services at GMHC or one of the other community-based organizations tabling at the fair.

This year is going to be a big one for the Latex Ball. With our new venue, and new organizers serving on the planning committee, I predict a big success. Together, we will walk and judge the categories, and make sure that everyone knows that they matter. Now that the House of Latex is inactive, other Houses such as Ebony, Balenciaga, Mizrahi, Khan, Prodigy and Garcon, among others, have picked up the banner of Latex and are educating their members. They come together through the Latex Project and compete at the Latex Ball – raising the visibility of the House and Ballroom community, while helping us save lives. The Latex Ball is successful and the largest ball in the world because we came together, collaborated and continue to embody the spirit of Avis Pendavis, and the late Arbert Santana Evisu. GMHC made the commitment to the House and Ballroom community 23 years ago, and we keep that promise every year, despite the funding for the ball being cut. Now we have to raise funds by sponsors and ticket prices.

I continue to honor the memory of Avis by working at GMHC, and keeping the Latex Project alive. Her memory burns bright as we continue to make the community stronger. I am so grateful for all of the Houses who participate and remain committed to help us in the fight against AIDS.

I hope to see you pumping the runway this weekend!

See more Luna at the Luna Show on Youtube, learn more about the Latex Ball at MyBallroomLife.com and on their Facebook page, and buy tickets to this year's Latex Ball here.