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As a long term AIDS survivor who was a community journalist, and a former member of PWAC-Denver and San Francisco's ACT UP/Golden Gate, I firmly believe that AIDS service organizations were the downfall of community activism and that any revival of community organizing would need to be scrupulously separated from full time, paid, organizations. During the mid-to-late 1990s, San Francisco's AIDS organizations grew into massive bureaucracies that pushed out most of the GBLTs and People with AIDS who founded them. Instead, HIV-negative heterosexual social worker types now manage many HIV organizations and view the clients with disdain. Stereotypically queer behavior such as going to sex clubs and drag are being repathologized as “sex addiction,” “transvestic fetishism,” and “gender identity disorder.” People with AIDS who make legitimate complaints or who question their HIV care are labeled with “personality disorder[s].” The community “representation” on the CARE council largely consists of hand-picked clients who are beholden to one or more organizations. (One community member even participated despite her being in a locked psychiatric facility run by an AIDS behemoth.) At the same time, AIDS activists were marginalized, deliberately conflated with AIDS denialists, or offered financial incentives to follow the “party line.” In my case, my law school scholarship was conditioned on my no longer criticizing the AIDS Foundation. Many other excellent AIDS activists wore themselves out fighting with agencies over matters ranging from salaries to completing, on their own behalf, escalating demands for proof of income, HIV status, residency, etc. The result was AIDS organizations that engage in social engineering of the communities that are supposed to help while increasingly employing people who view AIDS as a source of income and not a subject for activism. No ASO will meaningfully challenge government initiatives as long as their main source if income is the same government agency. Nor will they sit by while AIDS patients criticize their sinecures.
I agree with your comments, but think perhaps the ire has died, partly due to the fact that those of us living with this disease for so long, have learned how to adapt to the side effects of the meds. Long Term survivors, I feel, believe we are now simply experiencing a chronic yet manageable disease. We have learned how to ignore any stigma. There can only be a stigma when we allow ourselves to be stigmatized! Where I feel we need more action is in educating people who may be leaning toward the denialist/dissident/Re-Thinking movement. The leaders of that movement seem to be more entrenched since the passing of their "quiet fighter", Christine Maggiore. It is almost as if their "rationale" has become even more bizarre and less rational (if that's even possible). I am afraid for those scared, newly diagnosed, or even those who have been on meds for a while and have become discontent with the side effects. Instead of taking control and changing meds, they listen to the nutcase denialists and go off their meds completely. Until it is too late, as it was for Christine Maggiore. Peter, I totally support you regarding your post. I also feel there is a bigger danger out there and that is the misinformation and complete lies put forth by the denialists/dissidents/Re-Thinkers. JTD
I live in the Daytona Beach area and am very interested in the efforts to create a statewide HIV advocacy organization for and by people with HIV and AIDS to address issues. The current structure of Ryan White services decision making in my area is driven by uncaring bureaucrats with little or no regard to people living with HIV/AIDS. The consortium which is supposed to coordinate these decisions lacks a consumer caucus and resists the creation of one at all costs. Participation is discouraged and drowned out through parliamentary jibber jabber. I want to be empowered to make decisions as to how my Ryan White services are directed! Thanks in advance for any information regarding statewide advocacy organization!
I signed up today. Peter, I agree with you. The movement for HIV/AIDS health care and rights has diminished from what it once was. All there is now are some lukewarm attempts at protests for gay marriage rights. So many of these rallies lack any spark or imagination. The cause is just but the messenger is half dead on arrival. So many people have died, an entire generation of glbt people from HIV/aids. That might have something to do with our lack of empowerment. I have been poz for 25 years and I am a little weary. Hiv is still such a huge stigma to carry. You do not see makeovers on Oprah for HIV folks. Nor are there apartments and homes redecorated for people with HIV on HGTV. Are they any out HIV media on CNN or MSNBC or working for a mainstream newspaper? I do not know. Maybe the Denver principles will become the new moveon.org. For that to happen we need leadership and I wonder about that.
Hello Peter, I wholeheartedly support your comments and views. I have signed on to the Denver Principles Project, join NAPWA and intend to be in Washington, D.C. next month for AIDSWatch2009. I applaud Housing Works's CEO, Charles King for his recent stances that will foster consumer being real stakeholders and front and center in all decision making as it relates to the health care and wellbeing of all PLWHA. I have started grassroots discussion in New York on a campaign that will garner support from our political leaders in Washington that would mandate consumers being a participating members on Boards of Directors of all those Service Providers Organization receiving Ryan White Funding. I believe that this is a winnable campaign and can be started with the H.E.L.P. Committee of Senator Kennedy. I currently receive my HIV services from the Gay Men's Health Crisis, Inc.(GMHC)-NY and believe that this organization needs to be in the forefront of such a campaign. Currently, GMHC Board of Director Chair, Odell Mays II and the senior management staff of the agency doesn't support such an initiative. My question is how does the agency square that position and still support the Denver Principles Project. J. Sellman, Secretary GMHC Consumer Advisory Board
Contributions to my life, and the quality of it I can now enjoy because of your efforts, Peter and others, is undeniable and sublime. This article, however, it a bit too self indulgent for my taste. Contributions though essential do have a half live. Bemoaning the past is folly.
Thanks for the great blog entry Peter. I could not agree with you more. That is why I and Dab the AIDS Bear Project was one of the first to sign on the dotted line. Luckily here in Florida, we are in the process of starting up a statewide HIV advocacy organization for and by people with HIV and AIDS to address issues. I know DC Fight Back and other groups are doing the same. But we need more people with HIV and AIDS standing up, speaking out and getting involved. Wishing you health, hope and happiness. big bear hug, Daddy Dab
Nicole
I agree with 100% ! I am newly diagnosed and feel like someone is pulling the hairs on the back of my neck to stand up and be counted and be heard. I am supposed to be going to a class this week on "when to disclose" because I disclose all the time and get the stigma all the time but its okay. The way I see it is if Rosa Parks hadn't refused to sit in the back of the bus or other people who have stood up for our civil rights where would we be today. I'm not contaminated, dirty, cheap, promuscuitive, bitter or mad or any of the other things people have said about me. I was recently treated horribly by a hospital, I was segrated and labeled by a local police department after being arrested on a minor traffic ticket, I am glad for all these things because they are teaching just how IGNORANT people really are. I hope to one day have my beautiful face on TV so everyone can see that I'm normal, intelligent, sensitive kind compassionate caring and careful. I hope to help prevent the spread the of this disease because I truly BELIEVE one person can make a difference just by doing small things. AND my dream is to eliminate the stigma and set my fellow captives free. Because secrets keep you sick. We should not have to live like the Jews once did during WW2 and hide any more. This is a free country isn't it? Do we not have an African American President? I think the time is now to stand up and show what BEAUTIFUL Human beings we are PEOPLE LIVING WITH HIV MUAH
April 28, 2009