The Body: The Complete HIV/AIDS Resource
Follow Us Follow Us on Facebook Follow Us on Twitter Download Our App 
Professionals >> Visit The Body PROThe Body en Espanol
  • Email Email
  • Printable Single-Page Print-Friendly
  • Glossary Glossary

Say it Loud, Say it Often

First printed in Being Alive Newsletter; updated for Women Alive

January 1997

July 1993: World AIDS Cases = 2,500,000
December 1996: World AIDS Cases = 22 million

LATELY I HAVE been re-acquainted with the ignorance in silence. Once I respected people's right to choose, whether or not, to disclose. Today, I have no patience for those who lie in their silence. Our truth is only told when we each speak the words, "I have AIDS," "I am HIV positive." Silence promotes fear and anxiety from those who do not know.

Complacency is rampant. Remember every dollar of AIDS care we have today involved a fight. Because gay men and drug users 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 fact that hundreds went down screaming for medical attention coupled with the fact that thousands have died. We owe every element of our care to the AIDS activist.

For those who receive their care at 5P21 (the LA county AIDS clinic), 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!

In addition, women with HIV/AIDS who qualify for disability benefits, have solely the AIDS activist to thank for working relentlessly to expand the CDC AIDS surveillance definition to encompass women specific symptoms. When Ron Rose and Scott Barry became disillusioned by the AIDS care system ten years ago, Being Alive was born. When people with HIV share their experiences over the phone, in support groups or at social events, their vision is continued. Ron and Scott could always be seen on TV proclaiming the truth of their lives, thus enriching ours. The fight of our voice is still as vital today as it was sixteen years ago. AIDS has changed, we have changed, but we still have a voice.

A new generation of people with HIV is emerging and taking hold. You are able to take advantage of treatments previously unavailable. The reason you get your AZT, etc. for free is because of those who came before you. We had to sleep on the steps of County hospital 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? We cannot continue to solely depend upon others to creatively respond. Many activists have died, yet hope remains 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. By the way, 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 of 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.

We must use our positions to not only bring attention to our journey through AIDS, but to call attention to an alternative from hate and judgment to providing a compassionate presence.

Being Alive/Women Alive have built an organization on emotional support. Hundreds of compassionate volunteers supported countless people with AIDS. The People with HIV/AIDS Coalition of L.A. needs to continue to take the lead in our community. Our voices must never be replaced by those of uninfected individuals. It is painful to watch so many other AIDS organizations with an HIV negative person at the helm, turn from a compassionate presence to just another agency participating in the bureaucracy of AIDS.

They must all know, your family, your friends. Our lives depend on it. We are not who the religious right paint us to be. Your silence leaves people no choice but to accept 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. You are solely responsible to continue what has been done for your benefit. What one man or woman 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. Sean Kinney served on the Board of Directors of Being Alive and was instrumental in the development of Women Alive. We print this in his memory and those with AIDS who have dedicated the final years of their lives to helping others with AIDS. Women Alive is proud of our history and joins Being Alive in celebrating the 10th anniversary of the People with HIV/AIDS Action Coalition.

  • Email Email
  • Printable Single-Page Print-Friendly
  • Glossary Glossary

This article was provided by Women Alive. It is a part of the publication Women Alive Newsletter.
See Also's Just Diagnosed Resource Center
Telling Others You're HIV Positive
More Advice on Telling Others You Have HIV/AIDS