Reflections from an HIV Advocate's Journey: Tori Cooper

By: Tori Cooper, Founder and Executive Director of Advocates for Better Care Atlanta, LLC

What can I say? I can’t even remember the first time I heard of HIV/AIDS. But I can tell you when it first hit close to home. The way I remember, my mom’s cousin and father died on the same day; one in the morning and one that evening. That’s terribly traumatic. My grandfather died from hard living. He was an absolutely beautiful man with a gentle spirit and a body that couldn’t withstand years of unhealthy living. My mom’s cousin was different. He had lived what seemed like an amazing life in the Big Apple, with fur coats and beautiful cars and glorious apartments in the city. Yet on this very same day, both of their lives ended within hours of each other. Neither of their bodies could any longer handle the pain and decay that had ravaged both of their brilliant light. My grandfather died of organ failure and her cousin died of complications due to AIDS.

I was in middle school and had recently lost my virginity. I remember so vividly because my first time (this time really counted) was on a Saturday while Soul Train was on. My mom dropped me off at my boyfriend’s house (she didn’t know he was my BF) as she visited my grandfather in the VA hospital. Around this same time, my family had traveled from VA to NYC to visit her cousin. She described having to wear all kinds of equipment, that I imagined was like a space suit, just to enter his room. No one could actually touch him, but at least they were able to be kind of close to him and share this space – even if it was through hazmat gear. They way I remember, it was sad, but in my middle school aged mind, it seemed kind of cool too. Soon after these two events, two men whom my mom loved so much lost their lives. Another thing that’s so interesting is how I can remember that the one who drank and smoked himself to death, was honored in a military funeral where the entire family grieved and carpooled to Arlington National Cemetery for a full military home going. The other, who lived a rather fanciful, pristine and glorious life, died among innuendo, whispers and rumors. This was my introduction to HIV.

A few years later, I began to socialize with my new friends. This was all part of my “coming out” phase and I gained so much street smarts. The girls used to tell me, “You won’t get AIDS if you don’t mess around with white men.” And I believed them. That was my HIV/AIDS education. I remember seeing Black folks, who now would be called Trans and Queer, looking great on one Friday and looking like death by the following Friday. I remember when the same folks that we partied with just disappeared.  Eventually, word would get out that they died and that would be the end of it. At some point during the next few years, there were fundraisers at the clubs and folks selling dinner plates to make enough money to cremate our own. This was all part of my coming out years. It was just how life was at the time.

Fast forward, high school came and went. I got to college and discovered so many wonderful things, and sexually, I just flourished! I had my first real love and my first real heartbreak. By 1988, we all knew about HIV. I had actually been tested and received a false positive. This was at a time when it took weeks to get your results. For a short period of time, I figured my life would be over just like those same folks I partied with as an underage teenager in the clubs. For a short while, I didn’t think I had a future. I just imagined that no one would ever remember that I even lived on this earth. And then when I learned that first test was wrong, I was stunned once again. And then came 1989…

By the summer of 1989, I had already visited Atlanta, partied in New York and clubbed in DC. I had joined the military and was attending an affirming HBCU (Historically Black College/University) which made me even prouder to be Black and unique. 1989 proved to be a turning point in the way I saw the world and other people and especially in how I see myself. I learned some truths about myself and found out some inescapable truths that affect every aspect of my life even now. And by 1989, it was obvious what HIV was doing to folks who were just like me. These were folks I had partied with, fought with, made love with and socialized with since I was sneaking out of my parents’ house at 11 and 12 years old. Within the next few years, this plague would ravage Black clubs and queer Black communities. Folks that I consider friends JUST DIED. There wasn’t anything special about it after a while. They JUST DIED. Some had horrific deaths with hospital stays, and skin lesions and were just skin and bones. Others looked kinda sick but seemed to have dodged the bullet, but then suddenly the news was circulating through the community that we had lost another one. But somehow, in spite of 1989, I was still here. Not only was I here, but I was living my best life. But how and why???

Throughout the early 1990s, you could visibly see the plague taking over our communities. My socialization was in the clubs. I partied up and down the east coast – Club Bunz, Hypodrome, Paradox, The Tunnel, Webster Hall, Traxx DC and Tracks Atlanta, Loretta’s, The Tunnel, Scorpios, Equelitas, Octagon, Scandals, the Pyramid, Club Colours, Paradise Garage, Onyx and so many others. I screwed my way from city to city and had fun the whole time. I figured if this inevitable plague was gonna kill me too, I was gonna go out kicking and doing splits. I observed that the HIV epidemic took away all the sissies and punks from Black clubs. Those were my friends. They were the ones who always got the party started. Unfortunately, those were also the ones society falsely blamed for being HIV to Black communities. Well, they said it was punks and downlow men. Punks and sissies took the heat for the Black community. I’m not sure I was ever a sissy. But sissies and punks were my friends. I never thought of myself as a sissy or a punk. I just wanted to be a woman.  House music and Disco suddenly became associated with gayness and just like us, it died out. Men weren’t dancing with men in gay clubs anymore. Isn’t that crazy? The same men had been sissies suddenly were wearing Timberlands and sweatpants. Nobody wanted to be a sissy anymore. In Black communities and Black clubs, that meant you were a part of the problem. HIV was killing us and HIV stigma was killing those of us who didn’t die. I didn’t die even though I was expecting it. But it never happened. I’m still here. And so many others, who probably deserved to be here, didn’t make it. There must be a reason, and it would take me another twenty years to figure it out.

So fast forward, I’m living my life. My ex and I decided I was going to relocate back to Atlanta and we would live happily ever after. When that didn’t happen and we broke up, I was suddenly all alone and still alive. Hmmm aint that something? In Atlanta I saw that folks who were just like me were being victimized on public transportation just for being themselves. I saw that Black trans women were still dying because they weren’t engaged in healthcare like I was. I witnessed Black Trans women being denied jobs, even at places where I worked, because they didn’t look or sound a certain way. Being single, I saw that these men didn’t give a shit about us. It’s like people viewed us Trans women as disease ridden, paranoia driven, sexual oddities and not real people. Black Trans women were being killed and nobody cared. I had to do something about it because I was still here.

I swear to you that God revealed to me in a dream that I was supposed to be doing this work. I was in my 40s, single, Black, Trans and still alive, and He or She “called” me to do the work. So, I’m doing it. I’m doing it for all the punks and sissies and queens and queers who are not alive. I’m doing it for all those who died, when I didn’t. I’m doing it for all of US who are in this fight for health and financial equity and fighting systems of oppression. I’m not a martyr for being an HIV advocate. I’m just old enough and optimistic enough to think that I can make a difference in someone’s life. I’ve for the last 30 years when so many people didn’t. I’ve seen what death looks like. So if I can help one person, especially someone like me, to live to see a 30th birthday, and a 40th and 50th birthday, then I feel that I’m doing what I was called to do. I would be doing a disservice to myself and all of the communities that I represent if I didn’t continuously fight for all of us. This is all part of my journey.



Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.