Being Alive Newsletter, Being Alive/Los Angeles - July 1993
Sean Kinney

Complacency is rampant. Remember every dollar of AIDS care we have today involved a fight. Because gay men were a disposable segment of society, we were given nothing for the hundreds and then thousands of lives we were losing. We are a society of numbers. AIDS attracted Washington's attention because of the thousands who have died (it only took twelve people on a reservation to raise the concern of the CDC) coupled with the fact hundreds went down screaming for medical attention. We owe every element of our care to the activist.

For those who receive their care at 5P21, not one single day should pass that you do not publicly speak the name Mark Kostopoulos in pride. You benefit from his courageous fights. You could not call yourself an informed Los Angeles County citizen and not know Mark had AIDS. He said it loud, he said it often and people listened. What have you done to further the cause of AIDS? Mark is dead, he can't do your work any longer. Your turn!

When Ron Rose and Scott Barry became disillusioned by the AIDS care their community had created, Being Alive was born. When people with HIV share their experiences over the phone, in support groups or at socials their dream is continued. Ron and Scott could always be seen on TV proclaiming the truth of their lives, thus enriching ours. The fight for our voice is still as vital today as it was thirteen years ago. AIDS has changed, we have changed, but we still have a voice.

A new generation of HIV is emerging and taking hold. You are able to take advantage of treatments previously unavailable. We had to sleep on the steps of LAC/USC overnight for treatments you receive today without fanfare. Tomorrow there will be other treatments we are blocked from. Will you join the fight, or watch it on the local news? While ACT/UP can no longer be depended upon to creatively respond, there remains hope in each of us who carry this deadly virus. There is just one trick...you must say it loud and you must say it often.

There is nothing I wouldn't do to further the cause of AIDS. I am damn proud of every protest, every walk, every discussion I have participated in for AIDS. For me AIDS is not a sign of weakness. You cannot know me five minutes without hearing "I have AIDS." Too direct? Think again, lives are depending on it. Did I mention I have AIDS?

Years ago when AIDS was the unspeakable, I shocked a congregation from the pulpit when I shared my newly discovered HIV status. Dave Johnson had made me very aware through his countless public addresses and private discussions the enormous importance of speaking the truth of AIDS in your life. He was right. My journey in AIDS is a very public one and you have benefited from that just as I have benefited from my predecessors.

We must continually look at our history in AIDS and improve. When the infected leaders of our movement die or lose their ability to participate fully, other infected individuals must be ready to carry the banner forward. Two weeks ago Daniel P. Warner died from AIDS in San Francisco. Ten years ago Daniel and others founded the Los Angeles Shanti Foundation based on a San Francisco model. Before moving to San Francisco two years ago, Daniel served as Executive Director of the organization he founded. He used his position to not only bring attention to his journey through AIDS, but to call attention to an alternative from hate and judgement (common ten years ago) to providing a compassionate presence. He built an organization on emotional support. Hundreds of compassionate volunteers supported countless people with AIDS. Since Daniel's absence from the LA scene (replaced by an uninfected individual) it is only too obvious to see the agency's turn from a compassionate presence to just another organization participating in the bureaucracy of AIDS.

They must all know, your family, your friends. Our lives are depending on it. We are not who Jerry Fallwell and his religious right paint us to be. Your silence leaves people no choice but to accept his hearsay as truth. Be creative, be bold, be loud with pride knowing you are furthering the lives of your comrades. There is support all over this country from the PWA Coalitions. We better than anyone know how to talk to loved ones about HIV, because we, like you, live it every day of our lives. Volunteers at the Coalition can guide and support you in ways that uninfected AIDS bureaucrats cannot. But you must take the first step, the rest will follow.

You are the future of AIDS care. The cycle must continue or it will surely be stopped. You are solely responsible to continue what has been done for your benefit. What one man has done for you, you must do for another. Say "I have AIDS" loud, say "I have AIDS" often. Think not of the red ribbon you wear, it is your story they will treasure; it is your story that will invoke a positive response. You are living proof that AIDS can happen to anyone...speak your truth often and very loud.
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