We are in tumultuous times. Just a few years ago, President Obama and Secretary of State Clinton were talking the "end of AIDS" and a few governors even advanced plans to address that lofty goal. Today, we wonder whether at the end of this year we still will have access to the health care we need as people living with HIV. Our representative organizations are largely silent, tense, waiting to see what will happen.
For decades, non-profit organizations were a loud voice in politics and advocacy. At the start, government agencies were slow to recognize HIV and even slower to respond. Community groups were the central service providers and advocates in the HIV epidemic. We invested our lives in these groups, trusting them to speak for us. We felt integral to these community organizations. The world of HIV non-profits has changed dramatically in the past 10-15 years. Many of the small, focused and LGBT-people of color groups have closed. The reliance on governmental funds led shifting political concerns to influence public health funds away from small non-profits and towards medical providers. Other HIV organizations have become clinics or merged with a larger clinic. Lastly, more and more HIV organizations no longer have HIV in their name or mission statement.
(Andrew Spieldenner Ph.D. photo by Linda Cherfas)
I do not blame these organizations for their survival choices. I am acknowledging a field in flux. Advances in science and knowledge have transformed the ways that governmental organizations and service providers envision HIV prevention and care. There are more tools available, including better treatments, leading to more emphasis on clinical interventions. While these clinical interventions are promising and exciting, they fail to address the context of our lives -- such as trauma, lack of support, the need for work and housing, the ways that we manage our hurt, mental health challenges and sexual and reproductive health, just to name a few.
Today, I am waiting to see exciting new leadership emerge in the remaining HIV field. I am part of a generation of HIV activists who have left the professional part of the field. At HIV non-profits, I was employed in a variety of positions: management, evaluation, fundraising and policy analysis. I now work as a professor at a university. I still engage in HIV advocacy and community building as part of the largely volunteer group, the United States People Living With HIV Caucus. I am a gay man of color openly living with HIV, and I no longer see a place for my kind of leadership in HIV agencies.
The precarious position we are in
I still see HIV organizations that do not have any mechanism or system through which people living with HIV can provide meaningful feedback. Many agencies bring their community advisory boards together regularly for dinner and a good time, not to deeply understand the direction of the agency. Criticism is heard as disloyalty, and often people living with HIV are fearful of our tiny place at the table being taken away or our services being impacted. While I hear service providers scoff at this, I wonder why they can't recognize the precarious position we are in.
To read the complete article by Andrew Spieldenner, Ph.D., visit TheBody.com, here.
Andrew Spieldenner, Ph.D., is assistant professor of Rhetoric at Hofstra University, chair of United States People Living With HIV Caucus and research director of the United States implementation of the HIV Stigma Index.