June 16, 2014
A Haven for the Affected
by Jawanza Williams
A member of a program for HIV-positive youth shares how they're fighting stigma.
I awoke one day and found myself halfway across the United States in a strange and sleepless city, where everyone seemed to smoke cigarettes and dine on Starbucks coffee. I’d found myself alone in New York City, courting the streets of Manhattan the way I dreamed I would as a child. But I had never considered that my very survival would depend on the generosity of the city. I never considered being HIV positive at 23 years old.
When I was first diagnosed, in January of 2013, I expected the routine: “Alright Mr. Williams, everything looks good.” But when the nurse walked into the room baring my rapid HIV test results, her disposition was something entirely new to me: it was heavy, silent and final. “Your test came back reactive.” There must be some kind of mistake. Surely, false positives happen, why not to me? Oh, no, this is really happening. What have I become? I don’t deserve this; I’m not that kind of person.
After the nurse shattered my life and altered its course completely, she politely handed me a card with directions to an HIV-specific clinic, the only one in the area. She said a few encouraging words and sent me on my merry way. I smiled and I left. I was totally and seemingly irrevocably devastated. My dreams were awash in the crimson fluid of shame and death—the incomparable lies of HIV/AIDS stigma.
Being diagnosed with HIV was the motivation I needed to take control of my life, because it reminded me of my mortality. I decided quite abruptly to move from my home in Texas to New York. A friend of mine who is aware of my status suggested that I seek care at the Spencer Cox Center for Health (formerly known as the Morningside Clinic), part of Mount Sinai Health System’s Institute for Advanced Medicine.
I’d had a difficult time in Texas securing treatment because I fell under the troublesome umbrella that most people my age face—I had no insurance. I did not (and still don’t, even post-Affordable Care Act) qualify for Medicaid in Texas. So, I was subject to ADAP (the AIDS Drug Assistance Program), which in Texas is hardly comprehensive as compared to the system in New York. When one has HIV it is critical that treatment is easily obtained, especially for socio-economically deprived populations, and Texas is not an example to follow in its commitment to its HIV-affected residents.
|Members of YAP (Photo by Marissa Kaiser)
At the clinic I was welcomed with informed and, more so, inviting arms. I felt safe for the first time post-diagnosis. Katie Poulin introduced herself to me. She is the founder of the Young Adult Program (YAP) that immediately changed my perspective on HIV/AIDS and those affected by the virus. Poulin founded YAP in 2007 as a response to the changing face of HIV. Many of the individuals Poulin works with in YAP were born positive.
As a result of the blessings of modern antiretroviral medications, children are generally no longer born with HIV in the developed world. Many of the organizations that catered to HIV-positive youth began to slowly close simply because the population of positive children were growing up. This posed an issue for advocacy and continued support for those young people affected. Poulin was interested in re-creating an environment that would provide similar attributes that the YAP summer camps did. It was an ambitious idea, new and uncharted territory for Poulin. In short, it worked.
YAP, being reserved for people ages 16 to 26, with an option for an extra year of involvement for members aging out to become YAP Leaders, quickly became more diverse than Poulin initially anticipated. The number of men who have sex with men (MSM) joining YAP began to grow quickly. This created an interesting and powerful effect. Previously, people born with HIV were generally kept together—separate from people who contracted the virus at a later stage in life.
Naturally, the psychological difference and reality of those born positive, as compared to those who contracted the virus later, is totally different. In YAP this convergence of different experiences is an element that makes the program so successful. The inherent duality enriches all of the members because it allows for a conceptualization of HIV/AIDS and its physical, psychological and social ramifications that would be otherwise absent in our lives.
The YAP experience is something otherworldly in terms of its power to help its members cope with diagnosis and remain in treatment. A typical day at a YAP meeting is introduced by a health-conscious meal, followed by a Socratic go-around, where each member shares their name, diagnosis date and a brief discussion about what may be going on in their lives, both positive and negative. This is a moment that is very special for the members because it allows a moment to be comforted, encouraged, understood or to simply vent—HIV-related or not. We support each other, completely.
This exchange is like a ritual for the group that grounds the members, and allows them to reflect on themselves, others and potentially work through issues that they are experiencing. The subjects that typically come up through the go-around system are expansive, and the spectrum wavers from housing complications to if, how and when to disclose one’s status to other people.
Poulin uses the promise of a warm meal, Metro Cards and child care to encourage participation because the meetings take place at the clinic where all of the members receive treatment, so, subsequently, YAP members are significantly more likely to see their doctors and adhere to their regimens. Poulin’s YAP has effectively removed the typical barriers to treatment for young adults like me.
Being involved with YAP, members quickly become like family. We have birthday celebrations, which means a lot when one is HIV positive. Once a month Poulin coordinates an outing for the members to spend time together while having a great time, which facilitates a natural bonding. Jelani, a YAP member, recounted that YAP “has helped me overcome my fears, keep my head on straight, to stay positive and to not let anyone get me down.” Maree, another member, reflected that, “YAP is my second family. It helped me cope with HIV in so many ways; it made me realize that I’m not the only one. Going to YAP makes me feel comfortable to just talk about it and not be judged.”
YAP has also become a center of advocacy for HIV/AIDS-related situations. YAP members have worked on several projects that address HIV/AIDS-affected community experiences. For instance, YAP members have created several pubic service announcements that address stigma. Currently, we are working on raising funds to create new video public service announcements using an Indiegogo crowd-funding campaign. We are working closely with Kenny Shults and Victoria Sterkin of Connected Health Solutions on a project called MyMediaLife. They are helping guide the group in creating a poster campaign that will address stigma and HIV criminalization.
Watch this video for more about the campaign:
Poulin typically brings in speakers who are knowledgeable about situations that the YAP members are collectively affected by, and this exposure further helps the group evolve. Recently, Robert Suttle and Reed Vreeland of the Sero Project, a nonprofit organization that directly advocates against HIV-specific laws that are outdated and contrary to modern scientific knowledge, visited the group and opened our eyes to an issue that is incredibly relevant to us.
These outside involvements to the YAP program have an immeasurable value to the members. Many of these projects can be cited as experience for resumes; they are focused on creating a better world for HIV-affected people and they encourage critical thinking. These projects help normalize HIV, and the list could go on.
YAP is a fluid and sustaining program that continues to deliver for its members and the HIV/AIDS community. Without YAP, I cannot be sure that I would have an undetectable viral load, would have been able to cope with my diagnosis, or would have gained such a breadth of knowledge, support and friendship. I credit Poulin, YAP and its individual members, in part, with my very survival. The HIV/AIDS epidemic is not what it was 30 years ago, but it is still very much a scar that far too many people have to hide, ignore and fear; YAP saved me that agony. With these video campaigns, we hope to save thousands from the stigma that lives and breathes too easily in today’s rhetoric.
Jawanza J. Williams is a member of the Young Adult Program (YAP). Please email Katie Poulin at email@example.com for more information.
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