I was running Allegheny Women’s Center when the first
reports came in. I remember sitting at my desk in1981, reading the CDC’s “Morbidity and
Mortality Weekly Report,” as I did each week. And there, in the middle of
stories about measles, STDs, rabies, pregnancy, and car wrecks, was a small
item about a cluster of cases in San Francisco. Young, healthy men were being
diagnosed with Pneumocystis carinii pneumonia and Kaposi’s sarcoma, diseases usually associated with older men
with impaired immune systems. All the patients were identified as “homosexual’
in the article.
“This can’t be good,” I thought.
That was the understatement of a life time. All hell broke
loose. It didn’t take long for epidemiologists to determine that the epicenter
of this new pandemic was the gay male community (at the time, along with
Haitians and others), and then the media dubbed it the “Gay Plague.” Once that
happened, the rightwing seized on it as a “gift from God,” and rightful
punishment for sodomy. And gallows humor abounded, with one of the jokes in the
community being, “What’s the hardest thing about having AIDS? Trying to
convince your parents you’re Haitian.”
But there was nothing funny about what happened. My friends
started getting sick, fast – and dying, in pain and isolation. I had to stop
congratulating people on weight loss, because there was always the possibility
that they had AIDS. Health care providers shunned people with AIDS, refusing to
them care. My friend Mary Grace Fitzgerald, a nurse, told of caring for a man
dying of AIDS who started crying as she was helping him. He told her she was
the first person to touch him without massive gloves, gowns, etc., since he had
been diagnosed. Many funeral homes refused to bury AIDS patients, too. And no
one knew exactly how anyone got AIDS (the name alone said that – AIDS stands
for Acquired Immune Deficiency Syndrome, not a disease but a collection of
symptoms – and no one knew how to treat it, let alone prevent it or cure it. It
was an awful awful awful time.
So a despised, powerless, and often hidden community came under
attack by disease and bigotry. So what did they and their allies do? In the
words of the Church Ladies for Choice, “Dress up, Fight Back!” Courageous
leaders like Charles Rinaldo, Monte Ho, David Lyter, and Tony Silvestre got the
Pitt Men’s Study up and running, with the help of Lucky Johns, Randy Forrester,
Sharon Sutton, and many others. The Pitt Men’s Study was the
first safe medical haven anywhere for people who had or thought they had AIDS.
Still active today, the study led the research that eventually moved AIDS from
a certain death sentence to a manageable chronic disease for people with access
to medical care.
But we all took action politically, too. My friend Billy
Hileman formed the direct action Cry Out!, and I was thrilled to be a
charter member. With Randy
Forrester, co-founder and head of Persad, as the most well-known political
leader in the community, we pushed for both AIDs issues and civil rights on a
local, state, and national level. And even though lesbians were among those
least likely to contract AIDS, the lesbian community jumped in to help their
brothers – joining the political fight and providing the community care and
support so desperately needed.
It was hard. Bigotry and fear were rampant. We had to
fight through two different Pittsburgh City Council classes to get sexual
orientation added to the protected classes under the Pittsburgh Human Relations
Commission. One of the leaders of that fight was my dear friend and civil
rights icon Alma Speed
Fox. The Reagan administration was particularly awful, refusing to even
recognize the AIDS pandemic until 2005. I was at a huge demonstration in front
of the White House, where we engaged in civil disobedience. When the police
started to move in, they donned massive and extra thick gloves (think hazardous
waste), which enraged the crowd. People muttered about fighting the police.
Then suddenly a chant began, picked up by the crowd: “Your gloves don’t match
your shoes. You’ll see it on the news.” Everybody vamped and laughed. Then,
when the arrests occurred, the police brought in two buses – one for men and
one for women. My friend, Lois
Galgay Reckitt, who was handcuffed, leaned out the window and quipped, “They
really don’t get it!”
In 1987, when I was press secretary for NOW, the organizers
of the Second National March on Washington for Lesbian and Gay Rights asked the
NOW staff to provide major assistance to"The Great March." The slogan of the
march was, "For love and for
life, we're not going back!" We had all intended to help – after all, then
NOW President Ellie Smeal
was one of the leaders. But we found that so many of the people working on the
march were unable to continue because they had AIDS and had damaged their
precarious health through their non-stop work, that we had to jump in with both
feet.
By the next march
in 1993, the medical research and treatment had begun to change the dynamic, so
an HIV positive diagnosis was not an automatic and ugly death sentence – at least,
for those who had health insurance. Billy Hileman was one of the four national
co-chairs of the march, who gave me the amazing gift of hiring me to coordinate
news media coverage for the march and our issues. We re-framed the debate with
that march, no longer having to defend our lives against AIDS/HIV, but adding
LGBTQ rights to the civil rights agenda of the nation. And our civil rights
movement continues today with marriage equality among other issues.
But while AIDS is no longer a death sentence in the U.S.,
that cannot be said about all of our global neighbors. Poverty is now linked to
HIV, particularly in Africa. Life-saving anti-viral drugs are started too late
or not available. And bigotry and ignorance still prevail.
My close friends are no longer dying in huge numbers, but
too many others are. So I’ll be wearing a different red ribbon pin this World AIDS Day. Mine is
from the American Federation of Teachers, and it combines the red with the
colors of Africa.