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Michael and I in 1981
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by Mona Shaw
World AIDS Day hit me harder this year
than it has in decades. I don’t know why.
I jotted down these memories as they came to me. This is not a historical account of all that
happened even in Iowa during that dark time. It’s not even the tip of the
iceberg of all that took place. They are just a few things that I remembered
during a day of deep and painful grief.
Imagine awakening one morning and
realizing more than 30 of your friends have died. Friends your age and younger.
Vibrant adults in their 20s, 30s, and 40s.
Now imagine that isn’t the hard part.
Imagine your friends were killed, not by a crazed gunman, but by the president
of the United States, while an entire nation stood, watched, and did nothing.
And, it’s not just your friends, tens of thousands are dying across the nation.
And, still, nothing is done.
Imagine being criticized for caring about
them. Imagine being punished or persecuted for trying to get others to care.
This was my first direct experience of facing
the reality that some lives don’t have value. It’s not that bad if they die,
perhaps even preferable.
I remember the first time I heard about
it in the early 80s on NPR. It was a
mysterious disease that had killed a few dozen gay men in California. Very soon
the disease was called GRID, Gay Related Immune Deficiency. Like others, I
wondered if this wasn’t an overaction and a reason to criminalize sex between
members of the same sex. When my best friend Michael picked me up for lunch, we
talked about it and agreed it was probably just Anita Bryant drivel trying to
scare us from having sex.
Very soon, members of the LGBT community
would learn that the matter would shed far more horror than we could have ever
imagined.
By February
1, 1983, 1,025 AIDS cases were reported, and at least 394 had died in the
United States. Reagan said nothing. On April 23, 1984, the Centers for Disease Control and
Prevention announced 4,177
reported cases in America and 1,807 deaths. In San Francisco, the health
department reported more than 500 cases. Again, Reagan said nothing.
We knew
then, we had to save ourselves. Up until then gay men and lesbians were rather
separatist. This galvanized us. Lesbians were among the first to organize care
for men affected.
I cannot
overstate how homophobia brutalized the discourse and the efforts of the
day. To show sympathy for those dying
was considered support for gay people. Few wanted anywhere near that scarlet
letter, no matter how they may have personally felt. Most dismissed the crisis as getting involved
in controversial politics. We were told it was unreasonable for us to ask, let
alone expect, their support. The disdain for such a request was palpable.
Ironically, we were accused of only caring about ourselves.
The dying
men were political collateral damage. Not only was there no compassion for
them, the hatred for them and all gay people exploded exponentially. A
significant source of Reagan's support came from the newly identified religious
right and the Moral Majority, a political-action group founded by the Rev. Jerry Falwell. AIDS became the tool, and gay men the target, for the
politics of fear, hate and discrimination. Falwell said "AIDS is the wrath
of God upon homosexuals. It’s God’s way of weeding his garden." Reagan's
communications director Pat Buchanan agreed that AIDS is "nature's revenge on gay men."
I
remember being outraged after hearing Falwell say that one morning on the
radio. I exploded in the presence of a faculty member in my office.
“Come on,
Mona,” he said. “If you want people to respect your opinion, you have to
respect theirs.”
I was
furious. “I’ll be damned if I ever respect that opinion. How many homophobes
are dying because they’re homophobes?”
“Now
you’re just being ridiculous,” he said, “That’s why you people aren’t getting
any traction. You have too much anger and hate.”
You learn
very quickly if you’re a serious activist, that playing nice is the thing that
never gets any traction. You must rattle cages. You must cause trouble. That’s
the only thing that ever effects change. Once these efforts break a crack in
the opposition, the “reasonable” people like to show up and take over. But they
won’t make that crack.
What
happened in those years flows through my soul forever now like a sea of sorrow
and despair. And hope. And love. Nothing happens without hope and love. Memories will surface at unexpected times
seeming non-sequiturs of justice that have yet to disclose their connection.
I
remember.
I
remember David Ellingsworth, getting royally pissed at me for calling a recent
political win, “a start.”
“I am out
of time, Mona! Don’t you get that!”
We were
at an AIDS fundraiser at a local gay watering hole called 6:20. I watched him sing, “Stormy Weather” with his heart on
his sleeve. I grabbed him and hugged him when he was finished.
“I’m so
sorry,” I wept, “I’m so sorry.”
“It’s
okay,” he patted my back, “I’m sorry too. It’s just so goddamned hard.”
I
remember holding his mother Carol by his lifeless body in his coffin. She was
inconsolable, but brave. She patted my back the same way he had.
Not
everyone was lucky enough to have a mother like Carol. Many who died were
rejected by their parents. Some died alone. Others were held by those who stood
in as their surrogate families. There
were many, many saints.
I often
stare at a photograph of my closest friends during the 70s and 80s. We're
camping up it with coconuts
shells in our shirts at a barbecue in the 80s. There are eight of us. I’m the
only one in the photo still alive.
I
remember the first memorial service I went to for a friend named Kerry Grippe in 1986. Kerry was
a member of the piano faculty at the University of Iowa School of Music. A
bottle of hand sanitizer was hung on his office door after he disclosed his
diagnosis. His lover, also a good
friend, Allen Greedy gave me a framed fabric painting because I read Kerry’s
poems at the service. Allen died about a year later.
Kevin
Reeves was another close friend. We lived together. He was the best surrogate
father my older son ever had. We were the First Family of Theatre. We had the
sign on our front door. It was non-stop singing and slapstick in our home.
Parodies of songs, often at my expense. He could sing, act, and played a mean
piano. He killed Thomas Jefferson in his performance in “1776.” He promised me
he’d be careful. He promised me. We lost him in November 1996.
I
remember the first World Aids Day. Then it was called “Day without Art.” There
was a choral and orchestral concert that day being given the University of Iowa
School of Music. I was the School’s P.R. director. I knew the choir director
couldn’t cancel the concert, but I asked him if choir and orchestra members
could wear red ribbons.
“Oh,
Mona, don’t do this to me,” Bill Hatcher said. “I don’t feel comfortable using
my concert to make a political statement.”
“Bill,” I
said, “People are dying. We have to do something.”
We looked
at each other silently for a while.
“Oh,
screw it,” he said, “If anyone wants to wear a ribbon, it’s okay with me.”
When I
sat in the audience that night, practically everyone on stage was wearing a red
ribbon. I wept, of course. I felt a corner may have been turned somehow in the
struggle.
I know
Bill took a hit for his decision, as did I for instigating it. I am confident neither of us regrets the
decision today.
I
remember going to my third funeral in a week. I usually went to funerals with
my close friend, John Harper, a gay man and a faculty member in the English
Department. I sat in the car thinking
about not getting out. John looked at my quizzically.
“I don’t
think I can hold another grieving mother in my arms right now,” I said. My
bottom lip was quivering like it does in the cold.
“Sure,
you can,” he said, “We have to.” And he took my hand and held it through most
of the funeral.
Thank,
God, John is still with us, and we have a lot we remember. I remember John
returning from a trip to San Francisco in the late 80s looking pale and
stricken.
“It’s
like a holocaust,” he said. “The windows of clubs are totally papered with photos
of the dead. There are thousands. Death is everywhere. It’s swallowed
everything. I’ll never be the same.”
Survivors
guilt among gay men was a very real thing. “Why him and not me?” was often
heard. I remember Ozzie Diaz Duque reading a poem he'd written about it and one the many, many vigils.
I
remember a woman becoming furious when the word “holocaust” was used to
describe the epidemic or gay men in concentration camps in Nazi Germany. “In
the holocaust,” she explained, “People were killed for no reason.”
I
remember sitting and trying to list the names of friends I’d lost. I got to 33 and
had to stop. Only to remember several more later in the day.
I didn’t
only hold grieving mothers because their child had died. I held one after a
woman at his funeral told her, “You must be heartsick knowing that your son is
burning in Hell for all eternity.”
I
remember flying off the handle at “liberal” Iowa Senator Tom Harkin who did
vote for the Ryan White Bill, then later reassured a disgruntled constituent by
explaining the aid was for those who hadn’t “gotten AIDS on purpose.”
I
remember standing at vigils in all kinds of weather while we read the names of
those we’d lost. Many I did not know. At each vigil, the list was longer. It took hours to read it.
I
remember being told I had “gone too far,” when in a speech in Des Moines I
referred to our governor, Terry Branstad, as “murderer,” because he resisted
any funding in Iowa for AIDS treatment or research. I still stand by those
words.
I
remember giggling with Rick Graf about his large poster on a street corner in
Iowa City. The poster was a chart of AIDS funding and listed several items. At
the top, above the figures, were the words, “in Millions of Dollars.” There
were two columns, one for federal funding and one for state funding. Each item
had a great big “Zero.” Rick irritated as many people as he charmed in this
day. He had a talk show on Public Access called, “Silence Equals Death: So,
I’ll Just Keep Talking, Thank You.” Rick
died in 1995.
I
remember the AIDS quilt. I remember traveling to D.C. for its last complete
showing on the Capitol Mall in 1992. (It turned out there would be one more.)
My best friend lived there. I stayed at his place. Michael had AIDs.
My
bargaining with God had failed. I told God that I would give everything I had
to the movement if he would just spare Michael.
Like with
all justice movements, you don’t get anywhere without some civil disobedience.
ACT-UP had stepped up to the plate on that one, and we joined several actions.
My favorite was when several thousand of us wrapped a red ribbon around the
White House. It took a lot of ribbon.
Afterward, there was a rally in a green space behind the White House. A
woman was distributing Xeroxed copies of George H.W. Bush, who was still
president.
“Why are
you giving me this?” I asked the woman.
“It
rained last night,” she said, “You may want something to sit on.”
We put
more hope in Bill Clinton, who would soon be elected, than he would come to
deserve.
We sang
while waving our fists in rhythm.
“Nah,
nah, nah, nah, nah,
“Nah,
nah, nah, nah, nah.
“Hey,
hey, Goodbye!”
I meant
to join in during the “Die In.” But as I began to lie back, I saw Michael. He
was lying motionless, his eyes closed. I chose to just look at him instead. I
knew I was losing him. I didn’t want to lose a moment of looking at him while I
could.
Michael
was/is the best friend I will ever have. I knew that then. I know that now. He
was one of the friends some never get. He got me. He loved me so much and
unconditionally. He thought I was “It.” He would go along with my every Quixotic
mission, and he promised me as long as he had a place, I had a place. We had
been close since we were 15. We lived together, ate together, slept together,
lost in love together and hitchhiked together. He saved me time and time and
time again. He was my safety net, my soft place to land. I could not, would
not, imagine a world without him.
Michael
died on the phone with me. I was supposed to visit him the following weekend,
when his lover Aaron phoned me in a panic.
“He’s in
horrible pain! He’s waiting for you. I can’t take it. He wants to die at home,
but I have to put him in the hospital! I can’t do this!”
I asked
Aaron to give me a minute. I spun in the room in the worst kind confusion. I
called Don Engstrom, a friend whose advice I trusted. His partner Rick Graf had
died the year before.
“I think,
Mona,” Don said, “He needs you to tell him it’s okay to go.”
I phoned
Aaron back, and asked him to put the phone to Michael’s ear.
I told
Michael how much I loved him that he was the best friend I’d ever have. I told
him I didn’t want to lose him, but that I would be okay. That if he needed to
go, it was okay. Then the phone went dead.
In about ten
minutes, Aaron called back.
“Michael
asked me, ‘Did Mona really say that?’ I told him you had. Then he closed his
eyes and died.
It was
December 26, 1996. We were both 45.