ju»t o u t ▼ M p to m b tr 1 0 9 2 ▼ 13
W orking in the worst of times
The decimation caused by the AIDS epidemic on the gay men's community is taking a terrible toll
by Rachel Timoner
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ric Rofes is the executive director o f
Shanti Project, a large non-profit
f ^
agency serving people with AIDS in
m
, San Francisco. He is also a board
member o f the National Gay and Les
bian Task Force.
Rofes attended the June '92 International Con
ference on AIDS in Amsterdam and took the time
to talk with Just Out about his impressions o f the
conference and
thoughts on the
epidemic.
m j
What are the
primaryfunctions
o f the Interna-
tionalConference
on AIDS?
____________________________
Speaking
—
from my own perspective, I find the International
Conference helpful because it’s one o f the few
times during the year that researchers, doctors,
community-based organization representatives,
people with HIV infection and activists come
together in one place. There can be a very pow
erful cross-fertilization there. There can be a lot
of education that takes place. Sometimes what
happens is the medical researchers and the doc
tors don’t really talk to the activists, the people
with HIV or the community-based people, but
ideally than can really be a rich mix.
We heard a lot o f news about the reported
cases o f AIDS that are not accompanied by HIV.
What do you think o f those findings?
Well, I am probably one o f the few people
heading up an AIDS institution in this country
who will say it on the record, but I do not believe
that anyone has ever proven at Amsterdam or
•before that HIV causes AIDS.
I believe that this will nag on the United States
and AIDS research until people begin to investi
gate some of the alternate theories. To me this
report called up years' worth o f low-level discus
sions that refute that HIV alone causes AIDS or
that HIV itself can cause significantly anything.
Anecdotally, for all the years I ’ve been doing
this work (since 1985), I have known people with
AIDS who are HIV negative consistently, both
for the antibodies and the virus.
So what does that mean? To me it means that
in the rush to make progress on AIDS research, I
am scared that questions may have been answered
that we weren’t ready to answer yet, and I ’m
scared that there might be some wasted years
when we should have pursued some alternate
theories.
.
fensive and didn’t answer the question.
Another big story coming out o f Amsterdam
was about gpl60, the new vaccine therapy that
early studies show may stabilize T-cell counts.
What do you know about that?
I went to the panel on gpl60. This year there
were the preliminary results of six studies in
different parts of the United States. They were
simply supposed to be reporting on whether gp 160
was toxic -w hether they died, this kind of thing.
I was very heartened by the fact that all the
reports showed that it wasn’t toxic, that it didn’t
seem to cause any problems. Butm ore important,
there were significant signs o f stabilization o f T-
cell counts. In two reports there was evidence of
diminishing o f the viral load, meaning there’s less
active virus, HIV, in people’s bloodstreams. One
of the studies showed that o f people who were on
gpl60, none o f them became symptomatic who
w eren't symptomatic already.
This seemed like really good news to me. I
talked to a lot of the doctors, and they also were
excited and optimistic. It was the one medical
presentation I attended where there was any hope,
any excitement, where we were talking about
extending life more than two or three months.
That made me happy.
You mentioned before that you fe lt the work
ing relationship between doctor and researcher
types and activist and community organizer types
was better at this conference than in past confer
ences. Could you elaborate?
I feel like this was the conference that was
I do not believe that anyone has ever proven at
Amsterdam or before that HIV causes AIDS.
V.
. ■
____ ______ : ............................... ^
I’m not saying that HIV is not the cause or that
people don't need to be safe around sex. I ’m not
a scientist, but as a lay person, I have not read
anything that convinces me that that story’s over
with.
What do you think o f the U S. government's
immediate response that the report did not have
sufficient evidence to cause alarm?
People who have nothing to hide should be
able to deal with challenge more calmly. Why,
anytime anyone speaks about alternate theories,
you have either the federal government, an AIDS
doctor or the AIDS medical research establish
m entjum ping down their throat as if it’s heresy.
In fact simply saying what I ’m saying will make
some people think that I’m crazy, but I really
believe in science as an open field of inquiry. The
U.S. government response was inappropriate, de
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most successful at bringing both community-
based service providers and activists into the
running of the conference. More people were part
of key panels and key planning committees. We
were still outnumbered by the docs and research
ers, but it certainly felt like we had more.
You gave a presentation at the conference that
was cited in U S . magazines about the issue o f
relapse in HIV-negative gay men. Can you ex
plain your ideas?
I believe that significantly large numbers of
gay men are seroconverting right now. And
they’re not seroconverting because they’re drunk
or because they don’t know what’s safe or not safe
or because they’re not educated, empowered
people.
I ’ve had 10 friends since the start of this year,
in San Francisco, go from negative to positive
status. Most of them feel a tremendous amount of
relief.
I don’t believe this has been documented yet.
I believe that people are underestimating how
much it’s happening, and I believe people don’t
want to look at what’s going on.
I think that when we look at prevention efforts
targeting homosexual men in the United States
we need to look at those things. While most AIDS
prevention work today still focuses on getting
information to gay men and supporting gay men
in using that information, very little deals with the
psychological factors that might lead us to
seroconversion and the mental health stress we
are under.
I was disappointed at the conference that so
few of the prevention panels acknowledged that
people have a subconscious or unconscious mind.
It’s like Freud never existed; it’s the concept that
if HIV is out there, explain what condoms are, tell
people to use condoms, and they’ll use condoms.
That doesn’t factor in the subconscious or uncon
scious desire not to survive, survivor guilt and the
tremendous stress that gay men in high-impact
areas are under.
W hat is one’s mental health state after 11
years o f watching your contemporaries die; watch
ing a community you helped to build fall apart
around you; taking care of sick people and wiping
the shit off your best friend; burying your lover?
What is your mental health state when you realize
ficult to be in.
When you look at some issues (like the Advo
cate recently raised about cannibalism in the
community), I am struck by how many people
simply say, "Well, all fringe groups destroy their
own.” No one looks at what’s in front of our faces.
The gay community in the last 10 years has been
decimated, and we continue to be decimated.
Those of us who are “survivors" may be walking
around and still in our bodies, may have survived
physiologically, but on a spiritual level, on an
emotional level, on a functional level, we are
severely wounded.
What is it like when a group of wounded
people try to work together and do a project
together? Very, very difficult.
I think new organizing efforts have a very
difficult time in high-impact cities, and not just
because of the issues that are already there; the
issue of race, the issue o f racism, the issue of
gender, the issue of sexism, but because so many
people are desperate and fried and guilt-ridden
and angry and have no place to put it. We don’t
have access to George Bush, so we put it on
ourselves. I think organizing efforts are really
hindered, and I think the participation of gay men
as community leaders is really at risk. And not, as
everyone always says, because so many of our
leaders have died, but because so many o f our
leaders who have not died are so geared and so
angry and so guilty and so under attack that it’s not
-
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How can the Oregon Citizens Alliance be attacking
a population that's already under such attack?
How can people allow that to occur?
it’s not over, it doesn’t look like it’s going to be
over soon, and you’ve got 10, 20, 30 more years
of this kind o f life?
Well, we really don’t know, because no one’s
looking at the mental health state of uninfected
gay men.
I think if you ignore the mental health state of
HIV-negative gay men, those men are going to
become positive. Why are so many HIV-negative
gay men killing themselves? Why are so many
HIV-negative gay men who have been sober
relapsing? Why are they going outdrinking again
and shooting up again? It’s because we’re living
through something as severe as what people lived
through in Vietnam, what people experienced
when the United States bombed Hiroshima, what
people survived in historical situations that are
very concentrated on one population and involve
repeated loss, repeated trauma beyond what the
human spirit is able to cope with. Except in the
case of AIDS, we have the chance to look at it and
see it while it’s happening; but no one’s looking
and no one’s seeing.
What I see is a community of men who are
depressed, who are anxious, who are suicidal,
who are manic, who are hypochondriacs, and all
of these I see in myself and I see in other uninfected
men. These are conditions that can lead to not
taking care o f yourself and becoming infected.
When we [HIV-negative gay men] talk about
it, we are shamed by HIV-positive gay men often
or by ourselves. You know, “What are your
concerns, you’re not infected, why do work on
that?”
It’s a very hard issue to deal with, but I actually
believe that this explains the condition of the gay
community in most cities right now. You have a
gay male population o f infected people who are
scared and angry and have every right to be scared
and angry. And you have a bunch of uninfected
people who are scared and guilty. That creates
organizations and communities that are very dif-
necessarily productive for us to continue in those
roles.
I really feel there needs to be a focused com
munity effort on HIV-negative gay m en’s sur
vival. It is important for some gay men to survive
another 30 or 40 years simply to be able to report
historically what these years were like. There
needs to be an embracing o f that identity, not in a
divisive sense, not in a sertse that says, “I ’m going
to ignore AIDS,” “I’m not going to be a caregiver,”
“I ’m not going to volunteer," “I ’m not going to
give money”-b u t a part of what gets gay men in
trouble these days is that we confuse our gay
identity with HIV status. And I’ll tell you, in the
minds of people in the United States, gay equals
HIV-positive. I think that operates in gay m en’s
subconscious. It’s easy to confuse the two.
I would like to add for O regon-I really do feel
that 50 years from now, when people look back on
this epidemic and understand that the gay male
population is the population most infected, most
vulnerable, most dying and grieving, and they
look at what government did and what the church
did and what politicians did, people will be amazed,
just like they were amazed at the people who sat
there when the Nazis marched through Germany
and Western Europe and Eastern Europe.
They’ll be amazed at how the Oregon Citizens
Alliance can be doing this at this time. How can
you be attacking a population that’s already under
such attack? How can people allow that to occur?
That is not separate from our mental health.
We like to say it doesn’t have any im pact-w e can
beat the OCA and w e’ll be stronger for it-but the
fact is that the message that the OCA gives and the
message that homophobes give and the message
that the Vatican gives says you’re expendable.
You don’t deserve to live.
It has to be implicated. When we look at the
villains of the AIDS epidemic, they have to be
right up there, in Oregon.