Subject: The history of the PWA self empowerment movement
From: [email-masked]
Date: Tue, 6 May 1997 19:27:05 -0400 (EDT)

A HISTORY OF THE PEOPLE WITH AIDS SELF-EMPOWERMENT MOVEMENT
	Michael Callen  & Dan Turner
This was originally published in The Sourcebook on Lesbian/Gay Health Care,
V. 2
Published by The National Lesbian/Gay Health Foundation in 1988.
Michael Shernoff & William Scott, Editors

We thought it important to record the founding of the PWA (People With AIDS)
self-empowerment movement now, while our memories are not totally fogged
over. Many who were there are gone now and those of us who are left feel a
responsibility to those generations of People With AIDS who will follow to
explain how a movement was born a movement based on the breathtakingly
obvious concept that People With AIDS ought to participate in the decisions
that directly affect our lives. The founding of the PWA self-empowerment
movement is largely a tale of two cities San Francisco and New York. It is
sad that the first "comprehensive" history of AIDS in America, And the Band
Played On, omits or demeans the PWA self-empowerment movement. And so, to
the
best of our abilities, we will tell our own history herein so that future
generations may understand how we got here from there.
THE SPIRIT OF SAN FRANCISCO
Bobbi Campbell, diagnosed in September 1981, was one of San Francisco's
first
cases of AIDS. He was the first person with AIDS to go public as a PWA. At
the beginning of 1982, Bobbi began an important column in the San Francisco
Sentinel that explained what he was going through and offered
recommendations
for others. Dan Turner was diagnosed in February 1982. Dr. Marcus Conant
suggested that Bobbi and Dan get together to share their experiences. They
met at Dan's house in the Castro hills. The seed of what was to become
People
with AIDS San Francisco-- indeed, the concept of PWA self-empowerment itself
had been planted. Dan remember clearly that Bobbi prominently sported a
button with a simple but powerful message: "SURVIVE."
Cleve Jones asked Dan to speak at Harvey Milk's birthday party. Castro
Street
was closed off and Dan gave his first speech as a publicly-identified PWA.
His message contained three points: "Stay informed. Be cautious, but not
paranoid. And be supportive." The crowd cheered when Dan announced that he
had just run a marathon after completing nine chemotherapy treatments. This
was the beginning for Dan and Bobbi of many public speaking engagements.
Two important events took place at about the same time. Dr. Conant and Dr.
Paul Volberding had requested that Bobbi and Dan attend what proved to be
the
founding meeting of  the KS/AIDS Foundation in San Francisco. (The KS/AIDS
Foundation had grown out of the AIDS Hotline founded by Cleve Jones and Dr.
Conant.)
Shortly thereafter, Bobbi and Dan invited a few other people with AIDS to
attend a meeting of what became People with AIDS San Francisco the first
organization of, for and by people with AIDS (and ARC). In the early days,
Dan, Bobbi and a few others became "star cases," called upon by doctors and
the media to do many public speaking engagements. Out of this grew the
important notion that PWAs should be an integral part of AIDS service
organizations. As a result, People With AIDS San Francisco was asked to
choose which PWAs should be on which boards. Bobbi Campbell was added to the
KS/AIDS Foundation's national Board of Directors and Dan Turner was elected
to the San Francisco KS/AIDS Foundation Board. Bobby Reynolds, who had
temporarily dropped out of the early PWA San Francisco group, was eventually
added to the board of the Shanti Project.
On May 2, 1983, the first of many candlelight marches, led and organized by
people with AIDS, took place. The goal of the march was to bring attention
to
the plight of People With AIDS and to remember those who had died. PWAs who
organized the march included Gary Walsh, Mark Feldman, Chuck Morris and
Bobbi
Campbell (who, according to Dan Turner's diary, gave the "Hope" speech).
This
march was the first time PWAs marched behind a banner proclaiming what was
to
become the motto of the PWA self-empowerment movement: "FIGHTING FOR OUR
LIVES."
On May 23rd, People with AIDS San Francisco met and voted to send Dan Turner
and Bobbi Campbell to a conference in Denver in June 1983. This momentous
meeting provided the spark for what was to become the PWA self-empowerment
movement. The "FIGHTING FOR OUR LIVES" banner made its way to Denver for the
Fifth National Lesbian/Gay Health Conference, which included The Second
National Forum on AIDS and the First National American Association of
Physicians For Human Rights (AAPHR) Symposium. It was at this historic
gathering that the founding of the national PWA movement occurred and the
banner was used in the presentation of the "Denver principles."
MEANWHILE BACK IN NEW YORK
It is important to remember that AIDS was not always called AIDS. In the
early days, a number of names for this plague were proposed.  But, in late
1981 and early 1982, the name of choice was either G.R.I.D. (Gay-Related
Immune Deficiency) or simply "it." One had "it." "GRID," and eventually
"AIDS," were terms sloppily used to cover conditions ranging from
Lymphadenopathy through what is now called AlDS-Related Complex (ARC) to
full-blown or "frank" AIDS. This is an important point to remember since
many
of those who must be considered founders of the PWA self-empowerment
movement
turned out not to have what we would now call frank AIDS. But at the time,
no
one much cared about the distinctions and, as it proved, the energy of those
with Lymphadenopathy and ARC provided much needed continuity from generation
to generation.
One of the first New York City groups of People With AIDS was formed by
Michael Callen and Richard Berkowitz. The call for a group for PWAs came as
a
result of their controversial article in the New York Native in November
1982
entitled "We Know Who We Are." The group was called Gay Men With AIDS. The
stated goal of GMWA was "to support each other by sharing our personal
experiences, our strength and our hope." This turned out to be primarily an
emotional support group as opposed to a political group.  Also in fall 1982,
Mike and Richard met several other people with AIDS at one of the first if
not the first support groups in New York City. It was primarily peer-run
with
non-intrusive assistance from Dr. Stuart Nichols of Beth Israel Medical
Center. This support group included Phil Lanzaratta, the "granddaddy" of the
PWA movement in New York. Phil was New York City's first publicly-identified
PWA. He did a number of TV and print interviews and wrote a seminal
firsthand
account of living with AIDS for Christopher Street magazine. Again, Stuart
Nichols' group was primarily an emotional support group, not a political
group. It seems that we all had our hands full staying alive; it didn't
occur
to us to organize politically.
Some time in the summer or late fall of 1982, several of us PWAs (note: the
acronym PWA hadn't been invented yet; we were "AIDS victims" or "AIDS
patients" back then) became aware of the New York AIDS Network, a group that
met Tuesday mornings at the ungodly hour of 7:00 am at the East Village
offices of the Community Health Project. The Network had been formed by Dr.
Harold Kooden, Virginia Apuzzo and Dr. Roger Enlow, and had grown to provide
the first organized political forum in which to share information and
concerns about AIDS.
Several PWAs in New York were vaguely aware of Bobbi Campbell in San
Francisco. He was the first person of whom many of us had ever heard who was
courageous -or foolish- enough, to publicly self-identify as a gay man with
AIDS. We even he heard he had a weekly column in the Sentinel! How
progressive those San Francisco queens are, we thought. We continued to
follow his career sporadically in out-of-date copies of the Sentinel
purchased occasionally at the Oscar Wilde Memorial Bookstore. New York PWAs
and PWARCs began to express growing frustration at attending too many GMHC
forums in which those of us with AIDS would sit silently in the audience and
hear doctors, nurses, lawyers, insurance experts and social workers tell us
what it was like to have AIDS. It seemed to occur to several of us
simultaneously including Artie Felson. Tom Nasrallah, Bill Burke, Bob
Cecchi,
David Goldstein, Pete Nalbandian, John Bernd and others that there was
something wrong with this picture. The "real experts," we realized, weren't
up there. It would be akin to having a conference on sickle cell anemia in
which no blacks were asked to participate.
At a momentous AIDS Network meeting in late spring 1983, plans were being
made to attend the Second National AIDS Forum, sponsored by the Lesbian and
Gay Health Education Foundation. Word somehow reached us that Bobbi Campbell
and others in San Francisco were urging that the major AIDS service provider
organizations in the various cities sponsor one or more gay men with AIDS
and
pay all their expenses to enable them to attend the conference.
The idea struck like a bolt of lightning. Until then, it simply hadn't
occurred to those of us in New York who were diagnosed that we could be
anything more than the passive recipients of the genuine care and concern of
those who hadn't (yet) been diagnosed. As soon as the concept of PWAs
representing themselves was proposed, the idea caught on like wildfire (with
small pockets of resistance coming from some factions at GMHC). Part of the
widespread acceptance of the notion of self-empowerment must be attributed
to
lessons learned from the feminist and civil rights struggles. Many of the
earliest and most vocal supporters of the right to self-empowerment were the
lesbians and feminists among the AIDS Network attendees. Credit must go to
Alan Long (recently deceased from AIDS) who, though healthy at the time,
thought it was sufficiently important to support self-empowerment for PWAs
that he personally underwrote the expense of three of us to attend the
Denver
conference.
THE HISTORIC DENVER CONFERENCE
PWAs from all around the country gathered in a hospitality suite hastily
arranged by conference coordinators Fran Miller, MPH; Dan Pfeffer; Helen
Shietinger, R.N.; and Jeff Richards. Present, to the best of our
recollection, were Bobbi Campbell, Dan Turner and Bobby Reynolds from San
Francisco (Mark Feldman had planned to attend, but died just prior to the
conference; his lover, Michael Helquist, though not a PWA, joined us for the
final dinner in Denver to represent Mark's spirit); Phil Lanzaratta, Artie
Felson, Mike Callen, Richard Berkowitz, Bill Burke, Bob Cecchi, Matthew
Sarner and Tom Nasrallah from New York City; Gar Traynor from Los Angeles;
someone named Elbert from Kansas City by way of Houston; and one individual
from Denver whose name we unfortunately cannot recall. Bobbi Campbell
quickly
took charge. He articulated an ambitious political organization of PWA
groups
in all cities  With large AIDS populations and proposed that eventually
these
local groups might organize to form a National Association of People with
AIDS. New York's concerns about the etiological debate were incorporated
into
recommendations reflecting California's political and holistic concerns.
With
amazingly little friction, we came to consensus and drafted what have become
known as the "Denver Principles."  
Bobbi Campbell passed along Mark Feldman's semantic proposition that we
should insist on being called "People With AIDS." Mark Feldman felt
passionately that we should reject the terms "patient," or "victim." After
some initial skepticism about the importance of this point, the New York
contingent agreed to join California in insisting on "People With AIDS" or
"PWA" as the label of choice.
The hard work done, we then decided to storm the closing session and present
our demands. In democratic fashion, we each declaimed one of the points
until
our whole list of recommendations and responsibilities had been publicly
uttered for the first time. San Francisco had brought its banner,
proclaiming
"Fighting for Our Lives."
There wasn't a dry eye in the house, as a Washington Blade account of the
event noted. Ginny Apuzzo, keynote speaker, had to wait 10 minutes to permit
the audience to recompose itself before proceeding. The theme of the Second
National AIDS conference had been "Health Pioneering in the Eighties."
Ginny,
faced with the daunting task of following our emotionally devastating
presentation, opined that if those health care providers in attendance were
the health care pioneers, then those of us with AIDS were truly the
trailblazers.

KEEPING THE SPIRIT ALIVE
We left Denver with the task of organizing a PWA Coalition in New York.
Bobbi
Campbell flew to New York with Artie Felson, Richard Berkowitz and Mike
Callen and together, in the smoking section of that plane, they began to
plot
the overthrow of AIDS. Artie and Bobbi became close friends and, in
particular, began to design a plan for a National Association of People with
AIDS based on geographic representation.
Back in New York, an ad placed in local gay papers led to the formation of
the first political organization of PWAs in New York named, simply, PWA-New
York. Unfortunately, in New York, Gay Men's Health Crisis (GMHC) initially
resisted the notion of a rabble-rousing group of PWAs. In truth, many of the
early PWA activists organized partly out of a frustration with GMHC's
patriarchal (some thought patronizing) us/them approach. GMHC, the largest
AIDS service provider organization, was the longest holdout in terms of
implementing a policy of putting publicly-identified PWAs on their Board of
Directors. After some bumpy starts and some friction, however, peace was
made
and today GMHC and the PWA Coalition New York enjoy a harmonious working
relationship. Indeed, PWA Max Navarre sits concurrently on PWA-NY's and
GMHC's Boards of Directors.
The first safer sex poster to appear in a bathhouse in New York was written,
designed, paid for and distributed by this first People With AIDS
organization. In addition, the PWA groups born at the Denver meeting have
marched in innumerable parades, testified before countless legislative
bodies
and, in general, put a human face on AIDS. In San Francisco, Dan Turner
helped design the wildly successful, second safer sex poster, which drew the
viewers' eyes to the sexy image of two nude men, one black and one white,
embracing. This sex-positive poster changed the focus from a list of  "don't
do's" to a list of what one could do safely.
Back in San Francisco, after the Denver conference, PWA San Francisco
continued to thrive. Debate often raged over whether the group would be more
social or more political and a happy medium was struck. Shanti Project board
member Bobby Reynolds founded the Fun Squad, a group for people with AIDS
and
ARC that, among other things, sponsored massage nights.
On June 26, 1984, the San Francisco's Gay Freedom Day Parade was dedicated,
for the first time, to people with AIDS. PWAs followed right behind Dykes on
Bikes. Everyone cheered as they passed with the now famous "FIGHTING FOR OUR
LIVES" banner. Bobbi Campbell amused the crowd wearing his lavender "AIDS
Poster Boy" T-shirt.
In New York, the original PWA New York came on hard times. Internal
dissension, the deaths of many of the founders and a generally inhospitable
environment led to its dissolution. Out of the ashes of this group, the PWA
Coalition was formed. Today, the PWA Coalition is a thriving organization
with an annual budget approaching a half million dollars. It publishes the
PWA Coalition Newsline,  a 4~page monthly newsletter containing some of the
best writing of, for and by PWAs, PWARCs and our supporters. The monthly run
is 14,000 copies, which disappear like hot cakes upon publication. Surviving
and Thriving With AIDS: Hints for the Newly Diagnosed is in its second
printing There are 20,000 copies in circulation all around the world and a
revised edition is in the works.
The National Association of People With AIDS eventually became an arm of the
National Lesbian and Gay Health Education Foundation. In particular, Bernice
Goodman and Caitlin Ryan deserve credit for keeping the dream of a National
Association of People with AIDS (NAPWA) alive, particularly after the deaths
of Bobbi Campbell and Artie Felson. The birth of NAPWA was not an easy one,
but one must give credit where credit is due. The currently thriving NAPWA'
which includes PWAs from Boston, Chicago, New York, Atlanta, Columbus,
Miami,
Dallas, Houston, Chicago, Kansas City, Seattle, Vancouver, Los Angeles and
San Francisco, is the direct descendant of that momentous meeting in the
mountains of Colorado.
In skits that opened and closed the original production of The AIDS Show,
PWA
and playwright Dan Turner recreated a dinner that took place in Denver to
celebrate the founding of the PWA self-empowerment movement. An ice
breaking,
raucous, sex, drug and rock 'n roll quiz was initiated by Michael Callen and
has continued as a tradition nearly every time PWAs from around the country
gather to discuss political strategy. In Denver, after days of grueling
political debate, we also blew off steam by taking turns being photographed
in various compromising positions while wearing the nun's habit of Bobbi
Campbell, aka Sister Florence Nightmare of the Sisters of Perpetual
Indulgence. We would be remiss if we didn't at least allude to the
conference
romances between PWAs and PWArcs in Denver and at subsequent NAPWA
gatherings. All safe sex, of course. For many, this was an opportunity to
feel what it was like being intimate with another person with AIDS.
In the years that followed, new heroes arose to take the torch of PWA
self-empowerment from the hands of those who fell to this devastating
illness: Bobby Reynolds, Dean Sandmire, Paul Castro, John Lorenzini, Roger
Lyon, Ron Carey and Gary Walsh of San Francisco; David Summers, Griffin
Gold,
Michael Hirsch, Michael Calvert, Max Navarre of New York; Seth Newman and
Alan Kikonis of Boston; Bruce Hall of Chicago; Amy Sloan of Indiana; and
others whose names we have unfortunately forgotten. [NOTE: If anyone has
information concerning individuals who contributed to the PWA self
empowerment movement, please contact Mike Callen or Dan Turner, who hope to
maintain an ongoing history project.
There is no better way to end this brief history of the PWA self-empowerment
movement than to quote in full the 17 principles articulated in Denver in
1983. They are as relevant and powerful today as they were then.
STATEMENT FROM THE ADVISORY C0MMITTEE OF PEOPLE WITH AIDS
We condemn attempts to label us as "victims," a term that implies defeat,
and
we are only occasionally "patients," a term that implies passivity,
helplessness and dependence upon the care of others. We are "People With
AIDS."

RECOMMENDATIONS FOR HEALTH  CARE PROFESSIONALS	
We recommend that health care professionals:
1.Come out, especially to their patients who have AIDS.	
2.Always clearly identify and discuss the theory they favor as to the cause
of AIDS, since this bias affects the treatments and advice they give.

3. Get in touch with their feelings (e.g., fears, anxieties, hopes, etc.)
about AIDS and not simply deal with AIDS intellectually.

4. Take a thorough personal inventory and identify and examine their own
agendas around AIDS.

5. Treat people with AIDS as whole people and address psychosocial issues as
well as biophysical ones.

6. Address the question of sexuality in people with AIDS, specifically,
sensitively and with information about gay male sexuality in general, and
the
sexuality of people with AIDS in particular.