40 Years of HIV/AIDS A Critique
In an excerpt of Audre Lorde’s Litany for Survival, she writes:
We were never meant to survive.
And when the sun rises we are afraid
it might not remain
when the sun sets we are afraid
it might not rise in the morning
when our stomachs are full, we are afraid
of indigestion
when our stomachs are empty we are afraid
we may never eat again
when we are loved we are afraid
love will vanish
when we are alone we are afraid
love will never return
and when we speak we are afraid
our words will not be heard
nor welcomed
but when we are silent
we are still afraid
So it is better to speak.
remembering
we were never meant to survive.
1981 was a magical year for me. Alexander Godunov and Judith Jamison performed “Spell” as guest performers at Alvin Ailey American Dance Theater’s opening night gala. Dream Girls was on Broadway, Dianna Ross had a hit called I’m Coming Out, and Tom Browne had an R&B hit called “Thigh High” (grip your hips and move). I cheered as a University of Oklahoma Cheerleader in the Sun Bowl as Oklahoma beat the University of Houston 40–14. Life was good. I still believed in a world with the world had endless possibilities. However, By the summer of 1981, I heard about an illness that was primarily affecting white and Black gay men in L.A., New York City, and San Francisco. The sickness called GRID (Gay-Related Immunity Deficiency Syndrome) was infecting and killing gay people. Many Black gay friends believed we had no worries if we did not sleep white. They were wrong.
1981, Ronald Reagan was the U.S. President. Reagan did not utter the words AIDS until four years into his administration. Poor leadership and a deadly epidemic are a catastrophic combination. Imagine HIV/AIDS in a Trump administration. Reagan’s silence and neglect killed many Americans. By 1985, Rock Hudson has died, Elizabeth Taylor had created AMFAR and become an international AIDS ambassador. The life span of a person diagnosed with HTLV III during that period was 18 months. HIV changed the trajectory of my life. I had just begun to live. My house and everything around me was on fire.
By 1985, I left Oklahoma and joined the U.S. Navy. I believed I was insulated from HIV/AIDS for a period of my life and had escaped the burning building. In the Navy, I served as a medic and a hospital administrator. I worked in a Neonatal Intensive Care Unit (NICU). During that period, I was the “go-to” medic if an IV or PIC line failed. Through osmosis, I had inherited had my mom and grandfathers’ skillful medical hands. In the Spring of 1985, the commanding officer of the hospital moved me to an administrative role. My new role included leading the quality assurance and education and training department of Norfolk Naval Hospital. A rare duty for an enlisted medic. My Responsibilities included hospital-wide medical education of all staff and nursing education departments. That transfer also coincided with the Department of the Military’s decision to move any service member testing positive for HIV within a three-hundred-mile radius of a military hospital or U.S. duty station. Portsmouth Naval Hospital was one site selected to receive Navy and Marine, service members. Portsmouth Naval Hospital received hundreds of sailors and marines from 1985 to 1987. AZT did not provide much treatment. It was toxic, darkened the skin, and made wooly African diaspora hair baby soft fine. Taken it may have been helpful to some, but It also made your appearance changes noticeable.
These new residents of our hospital wards introduced me to my destiny. Essex Hemphill writes in his poem, “For My Own Protection,” about the revolutionary idea of starting an organization to save the lives of Black Men. That idea fueled my work. Those deaths and early losses motivated me to create my very own self-care cocoon. I studied nutrition, eastern medicine, read self-help books. In the absence of therapeutics and a cure, I tried to pour into every service member’s information to save their lives.
From 1987 to 1995, I met and befriended many sailors and marines who died from HIV complications. To date, all that I met at Portsmouth Naval Hospital have all died from AIDS-related complications. I watched HIV/AIDS suck the joy out of their once beautiful bodies and spirits. I watched families disown their flesh and blood. I watch them disappear from my social circle. Shame, self-isolation, and disappointment controlled their lives. I heard their last words. I held their hands as they died. I spoke at memorial services. Attending funeral services felt like, I too, was erased and disowned.
Coping with the trauma of loss was not easy. How could family turn their back on their flesh and blood? Their families said, “don’t come home,” the church said, “don’t come here,” and their weak-ass friends said, “I don’t’ know you.” I am still haunted by each one of those deaths. I remember sharing their anxieties and feeling their pain as they slowly fade away. I still feel guilty about their deaths. The pain of losing my friends was a horrible burden.
Watching these men die was like watching Leontyne Price sing her last aria or Kobe Bryant shooting his last free-throw against the Utah Jazz. I wanted to run away and hide, but I could not walk away from my friends or emotions. So, I boldly smiled and held their hands as they faded away. How could anybody still ascending life, die so soon? My brothers for life, Tony, Marv, Richard, Leroy, and I laughed and cried as one. When Marv and LeRoy died, they were abandoned by their mothers. They left me to assist with the planning of funeral and memorial services. In the case of Marv, I remember putting a call out to members of my fraternity Phi Beta Sigma, Incorporated, for assistance with an Omega service. I never felt so proud having brothers from Washington D.C. to Houston show up in Greenville, S.C., to do what brothers do. We buried our dead. I also remember the hatefulness and experience of mothers turning their back on their sons. Just awful. How could a mother turn her back on her child?
My friend Richard died surrounded by loving friends, a dedicated mother, a sister, and cousins. Tony died feeling the anger and rage of his mother. I still live with survivors’ guilt over their deaths. This dark period forced me to examine my personal support network and stimulate my spiritual journey towards self-healing and self-love. I had internalized their pain, shame, and isolation. I needed to discover my personal self-care. I am also haunted by the many black gay men who abandoned friendships and talked badly of infected people. The latter is still occurring 40 years later.
I began to pour my life into the thought and idea of saving my brother’s lives. Their pain and survival became my raison d’etre. That passion connected me to the center of the Black Gay Liberation moments and movements of the 1980s and1990s, and on into the 21st century. I attended the first international HIV/AIDS Conference in Montreal, Canada, served on the board of Black Gay and Lesbian Leadership Forum, founded Black Gay Support Group in Atlanta, Georgia, (Second Sunday), Co-Founder of the Black AIDS Institute, and the National Black Justice Coalition. Each effort was in memory of my friends and a step toward liberation.
Some observations: During the eighties, Black Gay advocacy occurred between the east and west coast. Fear, stigma, and religious dogma framed the prevention narrative. People who were infected were considered dirty, over-sexed people with low morals. This narrative harmed our prevention efforts and made the job of prevention and advocacy more difficult. Many Black Gay Males who committed to early HIV/AIDS leaders carried a double stigma. They were outcast by the black community, and the Black gay community was skeptical of their politics and motivations. In others words, they carried the burden of being too gay or too white adjacent. During the late 1980s and early 1990s, we witnessed a record number of HIV/AIDS public sector agencies founded and funded by the CDC. We also witnessed many of these same agencies because of the malfeasance of lack of community support fail.
Over the past forty years, several regionally and nationally significant Black Gay HIV/AIDS organizations no longer exist because of poor governance, undercapitalization, under-leveraged programs, and management misconduct. Many of the funded national social justice organizations are no longer providing HIV/AIDS prevention services, and communities of color are still struggling to address the HIV/AIDS epidemic. Many of the organizations were fiscally undercapitalized and structurally unevolved. These organizational models as constructed were not sustainable. The characteristics of many of these organizations included passion-driven leaders. Some of them lacked the management skills needed to navigate an organization from emerging to a fully evolved and sustainable nonprofit organization. The credentials of a few of the early organizations lacked range and knowledge of public sector structures.
While passionate and focused, many of these organizations lacked global social and political capital and influence to address the disease's totality comprehensively. Many of these organizations had faith-centered messages that led to further to further marginalization and stigmatization of HIV-infected individuals. HIV stigma in faith communities is still a barrier to effective prevention, education, and general community awareness. Although millions of dollars have been spent on public information campaigns, stigma, fiscal malfeasance, institutional mismanagement, and community marginalization still impact organizational effectiveness. Organizational effectiveness affects institutional capacity, influence, and the long-term ability to acquire financial resources and external influence. No one wants to give help to a failing or inferior agency. These deficiencies rendered many organizations incapable of keeping up with the community’s demands for management accountability and transparent leadership. Many of these limitations resulted from inadequate leadership, poor governing boards, and a lack of strategic planning. If organizations wanted to provide additional services, they would need to look to other funding strategies.
HIV/AIDS stigma has created barriers for Black Gay HIV/AIDS organizations and their ability to grow beyond local, state, or federal obstacles. Many of the challenges; included poor external stakeholder messaging and structural capacity. These deficiencies and poor institutional characteristics led to poor governance practices, ultimately leading to instability and failed organizations. Many federally funded community-based organizations could not galvanize external unrestricted monetary resource support to address HIV/AIDS complexities effectively. For example, a limited resource to adequately address housing, health care access, and education barriers. Not a recipe for a successful organization.
After 40 years of an HIV epidemic and HIV fatigue, the landscape has not changed much. Black Gay Men are still overrepresented in CDC Epidemic surveillance data. Organizations are still facing the challenges of stigma, bias, other social inequities. During the 80’s ad 90’s we represented around 35% of new infections. According to a CDC brief, “published research does not provide definitive answers about why new HIV infections among young, black/African American gay, bisexual, and other men who have sex with men (MSM) have increased.” This statement is problematic. They are supposed to fund “effective” HIV prevention strategies. The CDC still does not know after 40-years why infections among Black Gay Men have increased? This lack of knowledge is a limitation of social science. I also believe it’s a governmental and a community failure.
Dr. Joseph E. Lowery, Co-Founder and President Emeritus of the Southern Christian Leadership Conference, often said, When America gets a cold, Black America gets pneumonia. What has changed in 40 years? Not much. Structural inequities are still plaguing black and brown communities. Many organizations continue to suffer from a lack of social and political capital. COVID-19 has effectively and efficiently demonstrated what many who live in my community already knew. There are still two Americas, both separate and equal, one for the rich and one for the poor. More succinctly, it might be said, two Americas: the served and the underserved; Or the served and the ignored.
I am happy HIV/AIDS is no longer listed as a top ten disease by the World Health Organization (WHO). Pharmaceutical therapeutics continue to extend the lives of those who are infected. HIV/AIDS is now considered a chronic and treatable disease. However, the structural and human inequities have not improved the outlook for Black Gay Men. Black. We are still overrepresented in the contemporary HIV/AIDS health statistics and underrepresented at the local and national leadership levels. I see glimmers of individual and institutional successes, and that gives me hope. I wish for the complete eradication of HIV/AIDS.
My legacy over the past 40years has included hosting a Black Gay Man’s HIV/AIDS Capacity Building Conference on the campus of Brown University in June of 2001, assisting George Bellinger, Jr., Dr. Diana Williamson, and Phil Wilson found the Black AIDS Institute, and founding Second Sunday, a Black Gay Organization based in Atlanta, Georgia. I believe all these entities have impacted the culture and have improved the quality of lives of people living with and impacted by HIV/AIDS.
