Guest author Shannon Finucane says that Americans need “to create a personal dialogue about HIV/AIDS and the people who are still living with it,” and warns we “are not being adequately educated about HIV, and in the age of the sequester access to critical services like HIV testing and effective prevention programming continues to decrease.”
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.
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