Yesterday was a day that I spent quietly reflecting on what has transpired over the past 10,229 days. On June 5, 1981 a few words in the Morbidity and Mortality Weekly Reportchanged my life forever. With the Headline “Pneumocystis Pneumonia—Los Angeles” the story began:
Epidemiologic Notes and Reports
“In the period October 1980-May 1981, 5 young men, all active homosexuals, were treated for biopsy-confirmed Pneumocystis carinii pneumonia at 3 different hospitals in Los Angeles, California. Two of the patients died. All 5 patients had laboratory-confirmed previous or current cytomegalovirus (CMV) infection and candidal mucosal infection. Case reports of these patients follow…”
The news of this new “gay cancer” had the same chilling effect that other major life events have on us. I remember where I was when I heard the news, much like the memory of where I was when President Kennedy was killed, or the Space Shuttle exploded, or more recently when the Twin Towers went down. I remember the chatter at the bars and in the gay newspapers (remember–this was long before the internet). Information was scarce and people were scared. The gay community was being vilified, our elected leaders were silent and the virus marched on.
Having come out as gay several years earlier, I had friends and family members who wanted to talk about it, but didn’t know how to. Very early in the crisis we started to see the emergence of stigma and discrimination unlike anything I had ever witnessed.
In looking back at this period it was the death of a political naivete; thinking that our elected leaders were really interested in protecting the health and welfare of all of the citizens of this country.
Granted, my lens hadn’t widened much beyond the confines of southern Wisconsin at this point, yet I even saw Madison’s progressive tradition challenged by the arrival of this new and mysterious “gay” disease. People were frightened. Going to Rod’s or any other gay bar became less a time to have fun and more to see who was sick. Cancer became the code word for the yet unnamed virus.
During the course of the next 24 years I lived in the Arizona, New Mexico and Washington. I saw friends who had AIDS excited about the prospects of AZT mono-therapy, only to suffer horrendous side effects and eventual virologic failure. I saw friends with alarms set for every four hours so they could take their AZT on time. Walk down the street of any major city and there was evidence around very street corner of the devastation caused by AIDS. Funeral Home and crematory ads became a regular addition to the advertisements in gay newspapers throughout the country.
We saw the coming together of the gay community during the early years of this crisis; a community supporting one another; a community talking about things that dare not speak their names in the corridors of power: Condoms, Needle exchange, AIDS Activism, Safe sex, safer sex, etc. We went to funerals even when there was the very real prospect of protesters outside of the churches or synagogues. We demanded fast tracking of medications through the bureaucratic pipeline. We kept up the drumbeat around the fact that this is a VIRUS we were dealing with; nothing more, nothing less. A virus that knows no bounds and would, eventually begin impacting other segments of our population. We look back now and realize that HIV doesn’t give a damn about your sexual orientation, color of your skin, dollars in your wallet, age or gender. It’s simply a virus looking for a host.
We also witnessed during the early years of the epidemic the coming together of AIDS support organizations. The organizations, usually loosely formed by a cadre of volunteers, delivered groceries, became buddies, advocated for and helped those dying live their final days with dignity.
We saw the birth of Cleve Jones’ idea when he suggested that quilt panels be made for those lost to AIDS. Many years later we were in Washington, D.C., on the Capital Mall and the quilt stretched from one end to the other. It was the last time the quilt would be displayed on the Mall—it had simply gotten too large.
And, we celebrated the day that the Associated Press carried the article on August 14, 1998 that the San Francisco “Bay Area Reporter” had no AIDS related obituaries. The headline read “For Once, No AIDS Obits” and began with ” The news in the Bay Area Reporter this week was the lack of news. For the first in more than 17 years, the gay weekly contained no obituaries of AIDS victims. As of Friday, no AIDS death notices had arrived at the newspaper for almost a week and a half…. During the explosion of AIDS cases in the mid-1980s, the paper averaged a dozen obits a week, and they covered two or three pages. One week, there were 31 obituaries.”
In the late 90′s we thought we were close to a “cure”; the advertisements in national gay publications for various medications showed healthy, vibrant young men climbing mountains; sending the message that you just had to take a couple of pills a day and everything would be fine; that AIDS had now become manageable.
We saw pockets of communities decimated during this time. Living in DC during the late 90′s I saw the ravages in the African American Community and more often than not when I would go to my doctors appointment at Georgetown Hospital’s HIV clinic the majority of the other patients in the waiting room would be married, African American women.
As a person living with AIDS I saw a shift in our collective consciousness as a community when triple combination therapy (HAART) became a reality. The urgency in our community was gone. We saw AIDS service organizations failing to adjust to the new realities of the disease; failing to realize that their mission needed to change to support clients who were going to live. No longer were they simply midwifes for the dying.
Some of this was predictable and understandable. The apathy around HIV/AIDS today is a large result of burnout; we simply got tired of being the ones doing battle. In the last eight years we had a President who, while supportive of international AIDS efforts, ignored his own backyard as witnessed by the fact that close to four percent of the population of Washington, D.C.,is HIV infected.
Despite this, there is a resurgence of hope. There are the stirrings of the HIV/AIDS community coming together to confront the apathy that has grown over the past decade. We are calling our elected and appointed leaders to task for their failures to adjust to the changing nature of the epidemic. We are mobilizing and not allowing ourselves to be marginalized as embittered dissidents.
A history lesson is needed for many leaders of today’s AIDS movement. We have staff and elected leaders in many AIDS organizations who were not born or were in diapers when the MMWR appeared in June, 1981. We have many in leadership positions in the AIDS organizations who have no clue what it was like to pick up a gay newspaper in Washington D.C., or any other large city and see the obituaries taking up half of the paper. We have leaders who have never walked through the vastness of the AIDS quilt and witnessed the lovers, mothers. fathers, sisters, and brothers standing over the panel they lovingly made in remembrance of the loved one lost to AIDS. We have leaders of our AIDS movement who have no idea of the side effects caused by the very pills that have made AIDS “manageable”; the same leaders who are neglecting the issues confronting an aging HIV/AIDS community.
So, I quietly spent yesterday quietly reflecting on this important date and hoped against hope that there would be some public acknowledgement of the past 10,229 days by our elected leaders and those who have assumed leadership positions at our AIDS Service Organization. June 5th is the real World AIDS Day. It’s a day to reflect on lives lost, dreams realized and challenges ahead. All our community got was more of the same: Silence.
When someone asks me why I am so passionate about these issues and why I am willing to take a public stand and subject myself to the scorn of many for speaking my truth I give a simple and direct answer: I have no choice. Like it or not I am part of the history of AIDS.