Positive since 1986
In the late 1970s and early 1980s, homosexuality was starting to be accepted by mainstream America. It was spoken of in conversations, and a tolerant attitude was starting to prevail. Meanwhile, a menacing disease started to show itself. In the discos, the purple lesions became the new outfits of our dancing partners. Our friends who had been healthy one week were dying in hospital beds the next, while we, the healthy, remained silent. Lies and half-truths became the norm, and fear became our constant companion.
Before I even knew what really was happening, I became one of the many infected by this disease. On June 15, 1986, I stopped at the doctor’s office; he told me at 25 I should not have shingles, a neurological disorder that affects the elderly, not a 25-year-old athletic male. He said, “You probably have HIV; we will give you the test.”
Fueled by uncertainty, misunderstanding, fear, stigma and moral judgments, we allowed the discrimination to create a blanket of oppression. I, like many others, hid the disease like a secret cloak that would and in some instances did destroy lives. We watched as our friends dwindled away, allowing them the lies that they chose to tell, never challenging them or looking for the truth. We feared we would be next. On two different occasions I stood quiet as another one of my friends discussed their disease, not sharing that I too was infected.
So began a journey of loss and sadness, fueled by uncertainty and despair. I hid my head in the sand, and ran out of state, only to come back to a community ravaged by a disease. I wondered what had happened to everyone and where I would fit in. I feared for my community, which seemed a skeleton of what it had been before I left. I stood empty and alone with my community and our loss.
All my friends who had shared in the process of coming out and growing up were gone. All the people that I want around my heart are gone. They are forever sketched in my mind on beautiful canvas of tranquility, and the place they have in my heart is just a safe memory, like a trophy on a shelf. Others are memorialized on a panel that sits in a storage unit, too big to be shared in its entirety with the world again. They are a symbol of what and whom I have endured. But they as people, as a tangible realness, are gone.
A new community developed out of need, like a club whose only requirement for membership was being HIV positive. The Ohio State University had the AIDS Clinical Trial Group, a research facility that also provided blood work that would remain off one’s medical record. It was like a secret journal of an individual’s progression toward death. Grassroots organizations started to form, such as the Columbus AIDS Taskforce, the Ohio AIDS Coalition, and others. The infighting within the organizations and the need for services created a passionate yet sometimes volatile situation. The community was divided, and conflicts played out in meetings and personal agendas.
Unlike today, with medications and treatments that attack the virus and its replication cycle, during the early days of the epidemic, medications and treatment were more concerned with keeping an individual healthy. I have evolved like the virus. Back then I was on highly active antiretroviral therapy, taking AZT seven times a day, getting nauseous and feeling better just in time to take another pill.
I participated in my first healing weekend, and I found the support I’d been looking for in a new community of individuals who wanted to live with the disease, not die from it. I became a public speaker and was honored as speaker of the year. I continue to lecture at schools and universities, creating a bigger community through education. I spoke openly and honestly, no longer hiding behind the cloak of stigma, fear and discrimination.
When I am asked about my community, like the treatment of HIV, it is larger than only dealing with those that are HIV positive. My community is everyone living with or affected by HIV and AIDS. Today we have stepped outside the box, and are treating individuals who are HIV negative with PrEP to ensure that they remain negative. It is through open dialogue without embarrassment or contempt that we can create a level playing field.
Under the blanket of oppression, stigma and discrimination no longer will we lay. We have created a new community of unity and strength. We are no longer defined by a disease that once seemed like a moral judgment. Today we are a community united in the attempt to eradicate this disease. With the tides turning and equality spoken on the tongues that once only whispered of hope, we have come together and taken our place at the table. We as a community have asked and fought for a place of equality and acceptance. We are vocal in our pursuit, fueled by commitment and passion, covered with the memories, blood and sadness of those that came before us. We are the voice of those who died.
We must remain vigilant in the fight for the end of HIV infection. With no apologies, fear or judgment, we as HIV-positive individuals should stand firm and create a world without HIV and AIDS. We are a new community standing at the front of the parade of life as we laugh, care, and share.
What three adjectives best describe you?
Advocate, outspoken, caring.
What is your greatest achievement?
Speaker of the year
What is your greatest regret?
What keeps you up at night?
If you could change one thing about living with HIV, what would it be?
People’s fear about disclosing
What is the best advice you ever received?
Life is a stage and not everyone can be in your front row.
What person in the HIV/AIDS community do you most admire?
What drives you to do what you do?
Making and being a change
What is your motto?
I am where I am supposed to be, because I am where I am.
If you had to evacuate your house immediately, what is the one thing you would grab on the way out?
Nothing is as important as the people in it.
If you could be any animal, what would you be? And why?
Beaver—behind the scenes, but making all the changes.
Editor’s Note: Graig Cote was a 2015 POZ 100 honoree: http://www.poz.com/articles/poz_100_c_d_2991_28023.shtml