My first HIV related protest was in Tampa, Florida in the early 1990's. A group of us living with HIV marched down Bayshore Blvd. towards Tampa General Hospital carrying coffins, urns, and the memories of loved ones. We drew chalk bodies on the sidewalks representing the friends we had lost along the way. We begged for healthcare, for medication, for respect - hoping someone, anyone would hear us – hoping someone, anyone would listen – hoping someone, anyone would help us.
Too many died too soon. The pain and fear were unbearable, but we stood as a community - a united front. Always supporting one another - as there were few who dared to support us. This was even before ACT Up formed in our area. We were a group of people who were willing to stand up for ourselves and for others and face what the world had to offer.
I am not even sure if anyone else from that time is still around. My health rapidly deteriorated and I found myself lost in a system of care . . . that did not care. Homeless, dying, and afraid. This was the truth for many. That is . . . how it was . . . then. You fought when you could and then you disappeared. Too sick to continue, you often found yourself alone in a hospital room where they slid the food trays across the floor because no one was willing to come into your hospital room – to breathe your same air. Those living with HIV today can never image the horrors many of us had to endure in the early days of this epidemic. I wish I didn't remember – I wish I could forget.
There were very few women then who were willing to come forward. And at times, I felt like the only woman in the world who was living with HIV. It was difficult then and is still difficult today.
But today, I am saddened to see the dividing lines drawn in the sand. The inclusion or exclusion of people because they do not fit the right age, size, shape, color, or sexual minority status, seems to be commonplace - even within the HIV community.
Although I do not want our history of isolation, pain, and death to be repeated - I do long for the days when we, at least, accepted one another and worked together as a team - without trying to alienate each other and without drawing lines in the sand. I would love to see those days return.