NEW! If you don't understand one of the words in this article,
just double-click it.
A window will open with a definition from CancerWEB's On-line Medical Dictionary. If the double-click feature
doesn't work in your browser, you can enter the word below:
Kudos
to you, Sean! You managed to not only vocalize the frustration that
many of us in the HIV community have felt for years, but brought
clarity to these issues as well. You asked, and even answered, many of
the same questions that I have pondered. "[w]hy have our leading
AIDS organizations mostly abandoned grassroots activism?" Is it merely
a lack of desperation and urgency? Is it the fear of losing funding by
taking an activist stance? Those that feel no sense of urgency today
are apparently not students of our political system. We are currently
in imminent danger of losing many of the rights and benefits that our
"community" fought so hard to win. You are absolutely right—the stakes
are "more urgent and desperate than ever." We, as a nation, as a
people, as a movement, are allowing the current administration to
define the agenda, which allows them the freedom to make damaging
policy. Their "Orwellian logic," what I referred to in an article
recently as "doublespeak," has permeated our society. In a rush to
embrace "morality" and so-called "family values," our society has
forgotten to explore their true meaning. Anti-science? As we approach
the year 2006, surely this can't be a value our society wishes to
embrace.
My recent involvement with, and
continued commitment to, the Campaign to End AIDS was borne from my own
sense of frustration with the status quo. I'm tired of "a presidential
theocracy that is pushing its morality on America." Sean, you are
absolutely right. "None of this is about promoting public
health." It is about power, pure and simple. But I'm also tired of
being a "token" for the latest round of grant funding, tired of ASO's
and CBO's that are more concerned for their own power than they are for
the quality of our lives. I'm tired of our empowerment being "a slogan
rather than a system." The Campaign to End AIDS (C2EA) attracted me
because it tied the issues of poverty, civil rights and social justice.
It showed that WE can define the public policy debate surrounding AIDS.
Just
as we can no longer afford to allow right-wing moralists to define the
political debate and dictate AIDS policy, we can no longer afford to
allow timid AIDS service organizations to stand by and fail "to address
the emerging crisis." Just as our collective empowerment once gave us
"the political muscle to force change," it can do so again. Let's all
flex our political muscles NOW by joining, endorsing and becoming
involved again in the decision-making processes that directly affect
our own lives. Again, I concur with your message. Only TOGETHER can we
reverse "the disturbing twin trends of increasing stigmatization and
decreasing empowerment." Let's once again embrace the Denver Principles
as our mandate.
"…And how can I ‘Embrace Life’ when
last month, Gary Carriker, a gay man living with HIV in Georgia, was
sentenced to several years in prison. His crime? Not disclosing he had
HIV to sexual partners. None have sero-converted. But that didn't
matter. Nor does it matter, under Georgia and other states' laws,
whether condoms were used. Or how risky or safe their activities were…."
Somebody
takes an AK-47 and fires a clip into the air in random directions. If
none of the bullets hit anyone or damaged anyone, you wouldn't put him
in jail, would you?
I think you're on the wrong side of this issue.
We
could wipe out the epidemic by the strategy of let's get tested
together before we have sex... for sexually transmitted infections.
It
is a very powerful speech that has enlightened me, who works in the
HIV/AIDS field. I was unaware of the Denver Principles, but that
makes a lot of sense. Even though I am HIV negative, I am dedicated to
working in this field.
I too share Sean's concerns about the
direction of HIV/AIDS programming under the Bush regime. Mr.
Bush's AIDS initiative does not impress me except for the fact he has
funded AIDS programs in Africa simply because most people affected with
AIDS in Africa have been heterosexual. However, I think Bush has
done a lousy job of funding in the USA and his abstinence only dogma is
a complete turn off, a waste of resources and is not scientifically
sound.
Again, thanks for reminding us where HIV/AIDS really stands in 2005.
Bernie Berger, MSW Clinical Supervisor Black Coalition on AIDS
That was an excellent speech. I remember the Denver Principles, and
they helped empower me when I found out my status in 1987. Sean is so
right. Unfortunately, it seems that organizations like APLA really
don't care about client representation on their boards. They really
aren't even about client empowerment, as far as I can tell (which is
why I'm not involved with APLA anymore). It's more like a parent/child
relationship, where the clients are supposed to be the grateful kids
who are so lucky that parental APLA et al "takes care of them." Give
me a break. I hate to say it, but when these agencies were mainly
serving gay men, I think there was much greater client representation. I think the mainly Black and Latino populations they
serve now are not even empowered in society, let alone the HIV agencies
they get services at.
Ok, I'm done ranting.
Andrea
I
just read the speech by Sean Strub and have recently become acquainted
with your organization. I have been living in Croatia for three years
and have been diagnosed for one year now. I completely understand the
stigmatisms associated with HIV. Although we know now that HIV is not a
gay disease anymore, the perception here is that if you are HIV, you
are gay and against God. I myself am going to prison and being
deported. Not because I am sleeping with anyone, but because I had a
few bisexual experiences several years ago and my now ex-girlfriend and
high-profile attorney and her partner have brought me up on false
charges of extortion and are sending me to prison. The life I had one
year ago is all gone. I don't feel any differently. I am still healthy.
I am not sick. I tell people that having HIV is not a death sentence.
That having cancer or diabetes can be worse, but the stigmatism is
still there.
And therein lies the problem. People with HIV are
not supposed to be different anymore. HIV organizations don't have to
need board members with HIV anymore. It is just busines. I personally
have asked for assistance from every Human Rights and HIV/AIDS
organization I can find to help get my passport back and keep me out of
prison and the answer is the same. Sorry, discrimination of those with
HIV is no longer considered Human Rights violations because it’s not
supposed to "be" a Human Rights violation anymore. We have learned to
live with those with HIV. Therefore, we have lessened the need for
action.
I am not sure what will happen to me. I am lending my
services to organizations to educate people about those of us living
with HIV. I have not heard from anyone yet. HIV is like cancer. If you
don't have it, no one wants to discuss it. I will do the same with your
organization in offering any help I can do on the Eastern European
front.
Best regards, Tim Pena
Brilliant. Tragic. Perfect. Truth.
Susan MacNeil, Executive Director AIDS Services for the Monadnock Region
Sean
Strub’s article makes some good points but contains an error. FDA did
not bend to religious conservatives in its condom labeling proposals. A
guidance and a preliminary rule were published on February 14 that—to
FDA’s credit—confirmed the effectiveness of condoms to prevent HIV
transmission and specifically rejected the idea that condom labeling
should mention alternatives like abstinence methods. In this case, FDA
seems to be on the right track.
I think Sean’s speech is an example of magical thinking.
Unfortunately,
the problems with the AIDS industry are much larger and much more
embedded than his speech acknowledges. Having seen positive people
embroiled in financial scandals and scams no less so than negatives in
local ASOs and having witnessed positive folks trying to bully
providers into giving out Kemron a decade ago by claiming more
authentic expertise, increasing the involvement of HIV positive people
is no guarantee of any basic change.
Sean’s message is so timely. As much as Vito Russo’s comments from May, 1988 about how people dont 'give a shit.’
Sean
got me to ask what the makeup of Test Positive Aware Network’s staff
and board is. I remember when it was ALL peer-lead and the building was
packed on any given Saturday. Now, with over 20 staff and closed
weekends, AIDS Inc. has taken over.
I also did a search on
media coverage for World AIDS Day events in Chicago's media. The
Chicago Tribune had one, count 'em, ONE story on AIDS, in the Sudan.
That and ADAP, RWCA and Part D for Disaster are why we are restarting ACT UP here in Chicago!
Thank Sean for Acting out.
I
couldn’t agree more with Sean Strub’s World AIDS Day address on the
lack of positive folks on boards (and staff) of AIDS organizations. The
Medicare Part D Prescription Law is a prime example of how lack of
representation is harmful. In an attempt to do something for seniors,
we have a deeply flawed plan that negatively affects people living with
HIV/AIDS. "Our" organizations came into the conversation much too late
or not at all—not seeing it as a problem. The real problem is that our
national organizations & coalitions do not speak for us. But
unfortunately policy makers & the press see them as the grassroots.
I’m suggesting we put our attention to local organizing of PLHA’s and
support the National Association of People with AIDS (NAPWA). They are
the only national organization that can speak for us.
Mike Wonders San Francisco, CA
Regarding
Sean Strub's commentary on what is wrong with our movement: Kudos to
you Sean! You have hit the proverbial nail on the head. I am currently
working on an article regarding the Lifelong AIDS Alliance here in
Seattle. I will forward you the text when complete.
Mike Donnellan
Good Day, I
just want to make a few comments on the article "What’s Wrong
With Our Movement" by Sean Strub. I found it a good editorial and
obviously fustrating for Sean, and I have also seen various AIDS
Service Organizations in multiple cities over the last 4 years who
almost always "stink." Case managers, social workers, etc.... have
been the same, from below average to failures. It is not hard
to keep "UP TO DATE" and very sad when a client has to inform them of
changes, and they claim they "DID NOT KNOW"? Not good!
I
loved Sean Strub's article "What’s Wrong With Our Movement." I love
POZ Magazine and am very grateful to everyone involved with it. But one
thing—a very important piece—was missing from Strub’s speech:
Personal and social responsibility on the part of people with HIV.
All these nightmare Republicans and religious fundamentalists—they
represent a huge number of people and we can't just demonize them. We
need to reach out to them, talk to them, and try to find common ground.
And one thing that is essential for this common ground to be found is
for HIV+ people to convey to all of the right-wing that HIV+ people
support personal and social responsibility—including the absolute
necessity of disclosing HIV status to all sexual partners. That is 100%
MY responsibility. Just as it is 100% the other person’s responsibility
to ask me.
It is horrible that that man got several years in prison in Georgia for
not disclosing, but it was criminal that he did not disclose, and we
need to let the wider community know that we condemn that kind of
irresponsibility. The fact that none of his partners tested positive is
no thanks to him. (I don't know what the appropriate punishment is for
that, but certainly public condemnation.)
We do need empowerment (I've been positive since dirt) and support and
representation on these boards, but we also need to take responsibility
for our actions and do all we can to halt the spread of the epidemic.
All the publicity about bare-backing, crystal meth, older long-term
survivors losing their will to keep practicing safe sex—this is fueling
the right-wing’s agenda. We cannot hope to combat their hatred and
demonization of us unless we make it very clear to them that we are
committed to being responsible and halting the epidemic. I don’t mean
abstinence, but disclosure is absolutely non-negotiable. Sean's
wonderful speech was fatally flawed for wide distribution by this
oversight.
Lots of unconditional love,
Rayford Kytle
My name is Jessica Mardis AKA "Gabriel’s mom." I was very impressed
with the article written by Sean Strub. I just recently became involved
in OUR movement after attending the C2EA event and I am full force
ahead. I am already involved in C2EA for the upcoming events and a
member of AAIM (AIDS Action In Mississippi). I think it is important
for us to speak out and get people involved. I hadn’t checked out the
POZ website before now, but I am soo glad I [did]. I am now a member of
POZ personals and I truly enjoyed the website. We need access to
accurate information. I also truly believe as positive people we are
more qualified to bring that knowledge to others. I am so glad me and
my son Gabriel went to DC. I look forward to doing more in the future
for "my cause." I also look forward to the article that will be out in
January with the interview I did with POZ magazine. So, to RAP IT UP,
please keep up the great work.
Jessica Mardis
WOW
Sean Strub, what a great article on What’s Wrong With Our Movement. You
hit a lot of issues on the head. I have been volunteering with
organiztions near my home town—I go to test sites and help with that. I
find it strange, almost like a witch hunt. "How many positive people
can we get here?” The more the organization gets, the more that their
grants and other [projects] will be renewed. I have made a decision
that I no longer will get up at 7am and go out on "the witch hunts.” I
am HIV positive and not very well liked in the area of the so-called
HIV community. I am very vocal and this is a no-no!!!! Due to the fact
that positive people in this area still are mostly in denial. This is
due to all the things that you listed. Churches turning their backs,
political leaders turning their backs. In my eyes, they just don’t give a
damn. The State of Tennessee has been blessed to have had Ryan White
funding and will have it till the first of 2006. I urge people to write
the polictal leaders that are involved with funding. I get this back
from some people that are big in the so-called HIV community: "We
should not be concerned about funding, we are OK in the state.” What
narrow minds people have. If one state or one person does not get their
needs met, it SHOULD hurt us all. I have also noticed that
organizations want positive people’s input, but the input has to be on
their terms. It breaks my heart and angers me when I go to World AIDS
Services and see at the most 75 people in attendance. This alone should
show that something is not right. It also breaks my heart when I hear
from the state that HIV cases are on the rise. So where does one voice
in a crowd of many stand? That is the question that I have to ask
myself. Do I try to work with people that do not see the whole picture
or do I give up on [this] type of movement? I, like some, do not want
to be able to state that I did this and I did that for the HIV/AIDS
problem, because it means nothing. Like [someone once said], if you are
doing it to put it on your resume you are doing it for the wrong reason.
What did you think about Sean's speech? E-mail us at news@poz.com and let us know!
