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particularly the role of people with AIDS
and HIV. Grassroots community efforts are
often dismissed, minimized or ignored.
Historical truth is always more complex
than the simplified--and sometimes
manipulated--version of popular history we
are led to believe. The epidemic's history
has been, to an extent, commodified,
rewritten to serve some agenda.
I think it is important to have as many
first-person accounts, especially from
people with HIV who were on the frontlines,
so our experiences get documented and
preserved. And as time passes, there will be
more archives available, with documents
from those years that will tell an even fuller
As we get more perspective, the epidemic
and our response to it, is understood in new
ways and that's a good thing.
The ongoing theme to your AIDS
work, in fact, has been a respect and
focus on people living with the virus
themselves. You carry that banner
I don't think the LGBT community, or
people with HIV, have gotten the credit we
deserve for what we did in those early years.
How we came together to love and care for
each other was something remarkable. We
should the world our very best face and
what we did then should be celebrated
and recognized as a model, worthy
of emulation in many kinds of
situations. I also know that
it was other people with
HIV who comforted me,
educated me and enabled
me to survive.
The book is a reclamation
on your body --- from shame
about it, from infection, from
the sexual abuse you suffered. Do you
think it's a common challenge for gay
men to love their physical selves?
The title, "Body Counts," is an intentional
double entendre, referring to the loss of life
from the epidemic, of course, but also my
personal lifelong struggle for control of my
body. It has had many enemies: the Catholic
church which taught me that they owned
my body, sexual abusers who exploited me,
a government that sought to control my
sexual expression, HIV itself and even the
drugs to treat HIV. It has gotten better over
time, but shame-shedding doesn't happen
in an instant, it is incremental and I suspect,
for me, will be a lifelong process.
I can't imagine revisiting some of the
trauma you describe in the book, such
as childhood sexual abuse and a rape
by a roommate. Was it brutal to write?
I wouldn't call revisiting those memories
brutal, but it was at times emotionally
draining. Ultimately, it was healthy for me
to process pain, hurt, guilt and shame that I
had carried for years.
You write that it took 20 years to
recognize the rape for what it was. Do
we have a problem as gay men seeing
ourselves as victims of this sort of
When it happened I didn't even think of
the word rape as having any applicability
to men. I was still so ashamed of my
sexual desire and also conflicted about the
degree of responsibility I bore for what
happened. For many years I blocked out
the sexual abuse and sexual violence I had
experienced; it made me uncomfortable to
think about because I didn't think there was
anything constructive I could do with those
memories except feel bad about them.
Now I can look back and see that while
I may have been precocious in some ways,
I was incredibly naive and vulnerable in
other ways. In the process, I not only
forgave those who hurt me but I
ended up, quite unexpectedly,
forgiving myself as well.
You were absolutely
on death's door for a
few years, and squeaked
through in time for new
medications to save you. And
you were outright deﬁant about
showing the Karposi's Sarcoma (KS)
lesions that covered your body during
I think if more of my identity and
self-worth had been found in my body
I might have been more likely to pursue
cosmetic treatments for the KS. And the
objectification of bodies is practically in
the DNA of gay culture. Even as I began to
accept my own body, it was within a context
that clearly told me the body I had wasn't a
gay ideal. I'm skinny, have no chest and am
not especially athletic.
On the other hand, not conforming
to that ideal, not being as invested in it,
made it perhaps a bit easier when my body
become so obviously ravaged by AIDS and,
especially, Kaposi's Sarcoma. Less of my
self-identity was in my body, so its decline
didn't degrade my self-worth as much as it
might have for others.
I didn't treat the visible KS lesions
because I knew there were no treatments
that would slow their growth and I already
spent too much time in doctor's offices.
That was almost unimaginable to many
people who were horrified that I had visible
lesions and took no steps to even disguise
them with makeup.
I make the mistake of assuming
people know that AIDS advocacy
changed the entire patient/physician
dynamic, or that our response to what
we endured will forever be remembered.
Obviously that isn't necessarily so, and
why books like yours are important.
There is an understanding that AIDS has
been different, in many ways, and has had
a profound impact on the culture, society,
the healthcare system, drug development
and approval processes, even geopolitics.
I don't think it is widely understood how
different the epidemic might have been
had it not been for the self-empowerment
movement, or how truly radical those early
PWA pioneers were.
While ACT UP has been an important
part of my life and advocacy, so too has
the advocacy that precedes ACT UP, that
set the stage for our movement. That
earliest history hasn't been as well studied
or understood and I tried to give some
attention to those years in "Body Counts."
Randy Shilts' "And the Band Played On"
provide an important and detailed view of
the early years from his vantage point in
San Francisco; the story from those years in
New York hasn't been nearly as thoroughly
explored. Also, "And the Band Played On"
was written before ACT UP came on the
When you ﬁrst arrived at the ofﬁces
of a coalition of people with AIDS, you
write about having found a place you
belonged, at last, even after having
begun a business career and worked
in politics. What about it struck you so
Total solidarity. I felt so welcome and
safe that it enabled me to overcome the fear
of stigma. That's what I've tried to do for
others ever since.
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