One of the best-known AIDS activists in
the country, Sean Strub delivered the
keynote speech at the Campaign to End
AIDS’ 5th Anniversary event this week in
Washington, D.C. Strub gave a fiery call
for today’s activists to tap into the
power of the Denver Principles, the 1983
document that Strub calls the “Magna
Carta” of health-related
self-empowerment. The speech also
details Strub’s plan to create a Denver
Principles Empowerment Index to be
available online that will hold AIDS
groups accountable for their involvement
of the people they serve. Below is the
full text of Strub’s speech.
Sean Strub’s comments at the Campaign to
End AIDS 5th Anniversary Kick-off event
April 19, 2010
Eastern Market, Washington, DC
For those of you who don’t know me, I’ve
been HIV positive all of my adult life.
Like so many others, I acquired the
virus when I was a young person, back in
1979 or 1980. At one time I weighed
about thirty pounds less than I weigh
now, I was covered with Kaposi’s sarcoma
lesions and was very sick. I’m somebody
who was fortunate enough to have access
to and respond well to combination
therapy when it became available in
1996. I’m probably healthier today than
at anytime in my adult life.
Today I work with the Center for HIV Law
and Policy on a campaign to combat HIV
criminalization, and I’m also involved
with the North American chapter of the
Global Network of People Living with HIV
and AIDS.
I’ve been asked to talk about the Denver
Principles and their relevance today.
The first question is, Why do we revisit
the Denver Principles? It’s very simple,
they’re the foundation of the People
with HIV Self-Empowerment Movement. They
show us how earlier activism influences
our struggle today and what we can learn
from that experience.
The Denver Principles are also the
foundation of building a grass roots
movement, one led by people with HIV,
into a powerful voice. They also give us
an opportunity to participate in the
broader global movement towards the
Greater Involvement of People Living
with HIV and AIDS– greater and
meaningful involvement, sometimes called
GIPA.
Self-empowerment is what enables us to
demand resources from government for
treatment, care and prevention.
Self-empowerment is what gives us the
authority to speak to complex ethical
considerations with research and
treatment; like pre-exposure
prophylaxis, the proposal to give HIV
meds to those who are HIV negative but
believed to be at high risk of acquiring
HIV; or the “test and treat” proposals
that we’ve been hearing so much about
lately, that propose to test everybody
and put virtually all of those who test
positive on treatment, whether they need
it or not.
With “test and treat” we’re asking or
recommending to people with high CD4
counts, again, for whom there is no
demonstrated benefit, to go on lifetime
treatment, to participate in an
experiment, for a presumed “community
benefit” to prevent the spread of HIV
rather than individual benefit. We don’t
know whether above 500 CD4-cells it
makes sense to start treatment or not.
But “test and treat” advocates want to
put those people on treatment, despite
the absence of conclusive evidence that
it will benefit them and with a very
significant chance that it could harm
them substantially.
Self-empowerment enables us to fight
stigma, discrimination and
criminalization, and most important of
all self-empowerment helps us to live
longer and healthier lives. I am alive
because of self-empowerment. I am alive
because of the Denver Principles.
The History of the Denver Principles
The Denver Principles were created in
Denver, Colorado in 1983. It was the
Fifth Annual Gay and Lesbian Health
Conference, and it was the first
national gathering of people with AIDS
to organize and strategize politically
and empower themselves; there had been
some local activism in New York and San
Francisco and elsewhere, but there had
never been an occasion where people with
AIDS came from around the country and
got together and said, “We’ve got to
organize as people with AIDS.”
Twelve or thirteen people gathered at
the conference in Denver, they couldn’t
afford to pay their way there; their
tickets were bought by some other people
with AIDS who had resources and some
people who supported them. They didn’t
come representing organizations; they
were just people who were struggling to
survive, struggling to make sense of an
epidemic that had so profoundly
stigmatized them. They were very ill and
the political and cultural environment
was terrifying, including talk of
quarantine. It was a very frightening
time.
They met in a hotel room and wrote a
powerful manifesto we know today as the
Denver Principles, I refer to it as the
manifesto that launched a movement. This
manifesto was inspired by the Women’s
Health Movement, and it was inspired by
traditional healing systems in
communities all over the world, drawing
on the collective wisdom of a community,
not just experts imposing their wisdom
on a community.
There is plenty to be learned both ways.
We need experts and I don’t diminish the
importance of experts, but we need to
listen to ourselves, and we need to
listen to each other’s experiences,
because there is so much for us to learn
and to share with others from that. In
writing this document, they argued and
debated about what was important, what
they needed to say. And so they wrote a
manifesto that outlined the rights and
responsibilities of people with AIDS and
guidelines for health care providers and
others.
This was profoundly historic. It was the
first time, the very first time in the
history of humanity, when people who
shared a disease organized and asserted
the right to their voice, to a place at
the table, when decisions were being
made affecting their lives.
Before that, people who were ill were on
the outside, they had no voice, and they
certainly had not organized politically
to assert the right to that voice. The
Denver Principles manifesto is the Bill
of Rights, The Declaration of
Independence, The Constitution, The
Magna Carta all rolled into one, not
just for people with AIDS, not just for
people with HIV, but for people who are
dependent on a health care system, for
people who struggle with life
threatening illnesses.
In the scope of history, I am confident
that a hundred years from now that the
birth of the people with AIDS
empowerment movement, starting from that
hotel room in Denver with this document,
and running right this room
today—because we are the representation,
we are the heirs to that, those of us
sitting here today—will be seen as a
profoundly, profoundly important event.
After that manifesto was written, it led
to the founding of hundreds of
community-based organizations. Most of
our early AIDS organizations were
started by people who had AIDS, people
who thought they might have AIDS and
their very closest friends and loved
ones. That’s where they came from.
The ideas in the Denver Principles
spread outside the U.S. In 1986 in
Ottawa, Canada, at a World Health
Organization conference, they issued
something called The Ottawa Charter for
Health Promotion. It specifically
references this Denver Principles’ model
of empowering people to improve their
health. In 1994 The Paris Declaration
that UNAIDS organized, and I think
forty-seven countries signed it,
including the United States,
specifically referenced The Denver
Principles. Inspired by the Denver
Principles, the Paris Declaration
defined GIPA, the Greater Involvement of
People with AIDS.
The Denver Principles document begins
with a very important sentence. The
sentence is, “We condemn attempts to
label us as victims, which implies
defeat. We are only occasionally
patients, which implies passivity,
helplessness, and dependence upon the
care of others. We are people with
AIDS.”
Near the end of the conference the group
who wrote this manifesto stormed the
stage without invitation. They took the
microphone, they all stood there behind
a banner that read ‘Fighting for our
Lives,’ and they read their manifesto to
the conference attendees. The room went
totally silent, and then, according to
press reports at the time, the crowd
came to their feet, many were weeping
and began to applaud. For 15 minutes the
guys who wrote the Denver Principles got
a standing ovation. The people in that
room knew that history was being made at
that moment, and today, 27 years later,
we are the continuation of that history.
Let me just break for a moment, is there
a board member or a member of the staff
from the National Association of People
with AIDS here? [silence] Is there a
board member of a member of the staff
from the American Foundation for AIDS
Research here? [silence] Is there a
board member of a staff member from AIDS
Action Council here, the lobby group in
Washington? [silence]
Is my point clear?
[Audience responds loudly, “yes”]
The Denver Principles first established
the right to define ourselves. We
rejected other people’s labels of victim
or patient. We demanded that we be
treated as whole persons, with a respect
for sexual diversity. We asserted our
right to participate, and specifically
this is in the Denver Principles
document—to serve on the boards of
directors of provider organizations. The
Denver Principles’ recognized the
ethical responsibility to inform
partners of one’s health status, of
things that could potentially endanger
another partner. And that’s important
because there is a difference between an
ethical responsibility which also
depends greatly on a person’s ability to
disclose safely. The Denver Principles
asserted our right to as full and
satisfying a sexual and emotional lives
as anyone, and it demanded that we get a
full explanation of treatment and risks,
and the right to choose or refuse any
treatment modality.
So the question is what is the relevance
of this document written in 1983 when
the epidemic, in some ways, was very
different to today?
The Relevance of the Denver Principles
Today
Last year I made myself unpopular at a
briefing the Kaiser Foundation held on a
big survey they conducted. They had all
sorts of media present, and one of their
findings, they claimed, was that there
was evidence that stigma may be
lessening. They based that finding on
their survey results that asked, ‘How do
you feel about somebody with HIV working
in a restaurant and preparing your food,
or caring for your children,” or
whatever. And they were comparing those
responses from today to 10 or 12 years
ago and the numbers were better, people
are not as afraid of working with
someone with HIV or having them prepare
food as they once were. They said this
is evidence that the stigma is
lessening.
I stood up and I said, ‘What your
results are evidence of is that there is
less fear of contagion. Stigma is about
much more than fear of contagion. Stigma
is about pre-judgment! [applause] Stigma
is about marginalization! [applause]
Then, just to make sure I would never
get invited back [Laughter], I said,
‘The next time you want to know about
the experience of stigma for people with
HIV you could start by asking them.’
[Loud Applause]
So why else is the Denver Principles
document relevant today? Well the most
extreme manifestation of stigma is when
government sanctions stigma. We know the
Jim Crow laws, we know apartheid, we
know that when the government enforces
discrimination that this is the most
extreme manifestation of stigma. When we
see how the law treats people with HIV
differently from people with other
viruses, when the law treats our sexual
behaviors differently from others, we
see stigmatization. The HIV
criminalization statues are the most
extreme manifestation of AIDS-related
stigma. If anybody talks to you about
doing something about stigma and they
are not talking about repealing HIV
criminalization statures, then you tell
them their conversation is hollow. We
won’t effectively fight stigma by buying
billboards or ads on the sides of a
buses and then continue to persecute and
prosecute people with HIV under the law.
So why else is the Denver Principles
document relevant today? There was a
time when most of the AIDS organizations
in the country had boards of directors
that were entirely or mostly people with
HIV, or people who thought they might
have HIV. Indeed many of the largest
organizations were founded by people who
were virtually all HIV positive. A few
years ago, on World AIDS Day, I spoke in
San Francisco at the National AIDS
Memorial Grove. I talked specifically
about this issue of representation on
the boards of directors of provider
organizations.
In their wisdom, the people with AIDS
who wrote the Denver Principles
specifically included a provision that
noted the importance of and our right to
serve on the boards of directors of
provider organizations. So before I gave
that talk in San Francisco, I checked
with some agencies and asked how many
positive people are on their boards.
Some just said, “Oh, we wouldn’t
disclose that information.’ Some of them
said, “Well, there’s one, or there’s
two.” A number of them, including some
very large groups, said they had no one
at all with HIV on their board of
directors. At other major agencies the
representation that once had been the
agency’s founding energy and board and
what drove the agency’s growth had been
reduced to only a small number, five or
ten percent of their board. Very often
that was a person who already had other
obligations that potentially posed a
conflict, like they worked for another
AIDS agency across town. We need people
who are HIV-positive to work in the
epidemic, perhaps most importantly in
the delivery of services, so that is
something I support strongly. But we
also need the independent voices who can
come to a board meeting and just speak
the truth about what the real priorities
are, independent of worrying whether
their AIDS-related employer might agree
or not.
Participation on the boards of directors
of provider organizations has declined
to where it’s very nominal or token. Too
often, where there are HIV-positive
people, there is not the commitment on
these boards of directors to provide
them the training and tools necessary to
maximize their effectiveness as board
members. They’ll sometimes find somebody
who will be a compliant HIV-positive
person so they can check that box off,
‘Oh, we’ve got somebody positive on our
board’, without making the commitment to
ensuring that person’s meaningful
participation.
The Denver Principles’ further relevance
today is found in comparing the
empowerment model that started these
agencies initially, where the philosophy
and work was peer to peer, it was people
with HIV, their friends, their loved
ones, people who thought they might be
HIV helping others with HIV. It was an
empowered service delivery model.
Over time the system of service delivery
has strayed farther and farther away
from that initial model to the more
traditional ‘benefactor/victim’ model,
where you get what we give you and you
should feel lucky to have that. Another
reason the Denver Principles is relevant
today involves some of the new
prevention and treatment strategies that
present such serious ethical concerns,
like pre-exposure prophylaxis and the
test and treat strategies that I
mentioned. All of these things are why
it is so important that we revisit the
Denver Principles and use them as a
foundation and guide for our work today.
So part of my mission has been to
educate people about this document and
to share copies of it, and to urge you
to take it back to your homes, to your
agencies, to your friends, to your
support groups, and share the
empowerment message of this document,
because when we organize and assert our
voice we have an incredible authority,
an inalienable right to participate and
to be heard. We cannot be ignored
because we are the people who have the
disease, we are the people who will
thrive or suffer, survive or die
depending on how the epidemic is
managed. There will be others who can
try and co-opt us, but when we are
working together we will not be ignored.
A Denver Principles Empowerment Index
One of the projects that I’m working on
and welcome other people’s ideas and
input on is to translate the Denver
Principles document into an accountable
measure where we can look at service
providers. We are starting with
non-profit organizations providing AIDS
services (there are lots of other places
we could and eventually will go,
including doctors, government agencies,
different places). How do we measure how
consistent their organization and their
service delivery is with these ideals of
self-empowerment, with these Denver
Principal ideals? We’re trying to come
up with quantifiable measures in
different categories, not just to beat
them up and just rant and rave, but to
provide measures of and encouragement
towards incremental progress. There are
lots of people in these agencies who
want to integrate empowerment into their
service delivery but don’t know how. I
met with one director of a big AIDS
service agency in the South. He’s been
around a long time and knew all about
the Denver Principles. He said, “Sean,
look, you know me,” he said, ‘I love the
idea of the Denver Principles, but I’m
running an agency and I’ll tell you we
do a crappy job of using the Denver
Principles into our work here,’ he says,
‘what we need is help, we need best
practices, we need to learn what has
worked elsewhere and how we can use that
here at our agency.” So that’s something
else this empowerment index can do is it
can identify best practices and things
that work and share them with others.
So with the Denver Principles
Empowerment Index, we’re looking at four
categories in which we’ll develop these
measures. One is in the agency’s
governance and transparency, one of the
examples I cite often is Housing Works,
as evidence of an agency that can grow
large and can integrate empowerment
principles. I’m not saying Housing Works
is perfect, I don’t think they would say
that they’re perfect. But I’ll tell you
something important that relates to
their success. Their by-laws require
that one-third of Housing Works’ board
is elected by its clients and the staff
and volunteers have representation on
the board of directors as well. That
alone is fundamentally different from
almost every other major AIDS service
provider in the entire country.
In addition to the governance structure,
we’ll look at transparency—are the
minutes of the board meetings put on the
web site, are clients and the public
welcome to come to board meetings?
We’ll also look at how they develop
their programs and policies; how are
clients, how is the community they
served involved in those processes? Is
it just experts and staff hidden away in
a room coming out with a document,
without involving clients and community,
and saying, ‘This is our policy?’
Then we’ll consider how they deliver
services. I’ll again use Housing Works
as an example. Everyone knows that
Housing Works has managed to retain a
political identity and activist identity
even as it grew large. Part of the
reason has to do with the philosophy
behind the organization. They believe
that one cannot be empowered around
one’s health care in this country, in
this day and age, unless one is also
empowered within the political system to
access that health care.
And “empowered within the political
system” has range from just being
informed to participating in
demonstrations to showing up here at
this conference, to writing a letter to
the editor, to testifying at a
hearing—but it’s about participating.
And so Housing Works builds that into
how they work with their clients and
measures staff performance based on
their ability to create that engagement
with their clients.
The empowerment index will also enable
the community to create its own
measures, to rate agencies, programs,
providers. There are often factors that
greatly influence our ability to access
care that aren’t adequately considered
by service providers. We know that if
you go to an agency and you’ve got three
different appointments, they sometimes
make them on three different days, and
you’ve got to arrange childcare on three
different days and transportation on
three different days, and take three
different days off of work. If the
agency could coordinate those
appointments for the same day, it would
be vastly more efficient and enable more
of us to get the care we need.
We know that when we go to an agency for
service and the waiting room for clients
is like a waiting room at a prison where
you’re on steel benches and the staff is
behind bulletproof glass and metal
doors, that isn’t exactly welcoming. It
exacerbates a divide between clients and
staff. I can tell you that didn’t exist
in AIDS 25 years ago. It’s a new
development in AIDS.
So there are lots of measures that we
can come up with and the idea is to put
this Denver Principles Index on-line so
not only will there be the objective
measures of looking at their board and
this and that and responses from the
agencies, which we will then have to
lobby them to get them to participate in
it, but also ratings from the community,
any of us can go on and talk about our
experience there or identify other
measures that we think are important.
Another category for the empowerment
index is treatment education. How an
agency first of all develops its
policies around treatment, who they
recommend or don’t recommend for
treatment is important. I don’t believe
in one size fits all treatment
strategies—agencies that have one
treatment protocol for everybody, or
simply manage clients based on numbers
on a lab report. Well why do we need to
show up if they’re doing it from a
recipe; we could just send them our
blood! Many of us survived because in
the early days of the epidemic we could
only learn from each other because we
were the experts.
Well, we are still the experts, yet how
are agencies using our experience today,
do they listen to us or do they just
tell us? From the beginning of the
epidemic we’ve been the guinea pigs for
new drugs. We’re the ones who first
discovered many side effects, like
facial wasting and said, ‘Hey
something’s going on here, the Crixbelly,
buffalo hump, broken fractures, broken
hips, heart attacks, heart problems,
kidney failure. And almost every one of
those side effects were first responded
to by the drug companies and government
officials with “Oh, that is anecdotal”
as a way of dismissing or diminishing
our experience. [Audience members say,
‘Yes.’]
Well ‘anecdotal’ saved my life. We
continue to be the canaries in the
pharmaceutical coal mine. We know what
these things are doing to us before they
know. So those of us who are providing
treatment to us, they need to listen to
us, they need to collect data from us
and learn from our experience and send
that information upstream to regulators,
to researchers, to pharma.
And so with that I’m going to close and
take questions, but I just have to tell
you I am so proud to be here with you,
those of us in this room today, as we
are the heirs to that group that met in
that hotel room in Denver. And as
beleaguered and as frustrating and as
difficult as it is, as lonely as it
sometimes feels, history is going to
look back on us carrying the torch of
hope and empowerment through to another
generation, to another time. That is an
awesome responsibility, but I am proud
to share it with you.
Thank you.
[Loud Applause]
|
|
|
|
