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The POZ Army

| 9 Comments

I must admit, I've become deeply cynical about people with AIDS. I hate that I feel this way. The community I've always felt a part of - Americans living with HIV - has, in my mind, become impotent. Stigma seems to rule us, and we now find it easier to compartmentalize or hide this significant health challenge we all face.

Maybe it's not cynicism I'm feeling, as much as a deep sense of loss. I mourn the days when we were bound by anger and willing to fight together for our dignity and our place in the world. We used to suffer far more external stigma than we do today, but it only made us angrier and stronger. We'd yell out to all who would listen and to those who tried not the listen, "WE ARE PEOPLE LIVING WITH AIDS."

The stigma we live with today seems far more internal than external, as if we no longer feel we deserve to be heard or respected. We wrap ourselves in stigma, convinced that being uncloseted will lead to lesser rather than fuller lives.

Silence = DeathI mourn the days when we would stand up and be counted. We would organize and act-up. We had power. Some of the very first AIDS organizations were local People with AIDS Coalitions. People with AIDS San Francisco was the first, when Bobbi Campbell and Dan Turner started meeting in Dan's house in the Castro hills in 1982. Then came People with AIDS New York (later called the People with AIDS Coalition), with Michael Callan, Richard Berkowitz, Phil Lanzaratta, Artie Felson and others leading the way.

Then, in June, 1983, people with AIDS from New York, San Francisco, Los Angeles, Minneapolis and Houston came together in Denver to strategize. They wrote a manifesto - a blueprint for a people with AIDS self-empowerment movement - which would come to be known as The Denver Principles. (For a great read of this history, and the text of this manifesto, click here).

From there, the National Association of People with AIDS (NAPWA) was born; many of us founded the first AIDS service organizations in each city and state; we were instrumental in ACT UP. And we changed the world.

Anyone living with HIV today owes their life to this self-empowerment movement. Conversely, most of the issues we all still deal with, like treatment access, a rising rate of new HIV infections, and overwhelming stigma, are all made worse by the waning of this movement.

I mourn the waning of our power.

But recently, I've found reason for hope. There's a project in the works that has the potential to revive our self-empowerment movement. As before, this project is being driven by people living with HIV - people like Sean Strub, Regan Hofmann, Tim Horn, and Frank Oldham. AIDSmeds.com, POZ Magazine, and NAPWA are all involved, along with nearly 400 AIDS service organizations (and counting) around the country.

It's called The Denver Principles Project - a three-part campaign to recommit our community to the principles of self-empowerment, raise awareness of the Denver Principles amongst service providers and the communities they serve and to build a large national membership for NAPWA to give them the voice and authority they need to be most effective.

Imagine if we could turn NAPWA into the MoveOn.org of people with AIDS. Imagine if NAPWA could sit down with a senator or president and say "we represent 100,000 Americans living with HIV - all NAPWA members - and we demand to be heard." Imagine if tens of thousands of us participated in anonymous surveys and an ongoing database that could finally provide a true picture of the issues we face. Imagine if 100,000 of us could be called to action when important legislation is up for a vote or when someone attacks our dignity with stigmatizing falsehoods (I mourn the loss of highly effective ACT UP phone zaps).

All of this could happen if each of us was willing to join together, stand up and be counted again. This isn't about telling the world you're HIV positive - the NAPWA membership list will never be disclosed or sold. If you're HIV positive and can't afford the $35 membership, NAPWA will find sponsorship funds to cover your fee (just check the "I would like to be sponsored" option during the sign-up process). If you or your family and friends can afford it, please join and donate so NAPWA can sponsor as many members as possible.

I joined today. The goal is to have 100,000 of us join by December 1st, World AIDS Day. You can join here.

I want to shed my cynicism and believe in our power to create change again. Trust me, there is nothing like the feeling of true self-empowerment, and our collective action is the only way to achieve it.



Peter on:

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Comments on Peter Staley's blog entry "The POZ Army"

Outraged DC AIDS Activists Demand Emergency Plan & Doubled Funding

HIV+ DC Residents in Civil Disobedience Demand More Attention the Potholes!

Responding to new data that shows that 3%—and likely much more—of the District of Columbia’s population is living with HIV, AIDS activists today risked arrest to confront District officials. In front of the Wilson Building, District residents living with HIV and their allies demanded that DC double the budget for HIV/AIDS related programs and create an emergency plan to tackle the epidemic. Carrying coffins the activists then shut down traffic demanding that the mayor take people living with AIDS as seriously as he has taken pot holes in the last week.

“As someone living with HIV in the District I am appalled that year after year we hear worsening statistics and yet the many ‘wake up calls’ from the Mayor and the City Council haven’t translated. We need an emergency plan and at least twice as much money for programs to really address the epidemic,” said George Kerr, co-chair of the AIDS activist group DC Fights Back.

Activists demanded a clear emergency plan that identifies the gaps in the DC HIV/AIDS response, sets firm goals and timelines, and sets out the budget needed for a full response. They taped these demands to the front of the Wilson Building and gave the district 40 days to prepare the plan—until April 29th—promising they would return with larger, bolder actions beginning that day until the plan becomes reality.

“We will not wait any longer—we will not be silent any longer—while people in our communities continue to die from AIDS,” said DC Fights Back Co-Chair Larry Bryant. “We need a full emergency response: from testing to substance abuse treatment to housing. If the Mayor can get every pot hole filled within 24 hours we do not accept people on waiting lists for housing or DC children being needlessly born with HIV decades after this became completely avoidable.”

They noted that mayor Fenty this month announced an emergency pothole plan. "Potholepalooza. Nine trucks, going around D.C.," Fenty said announcing a new hotline and 48 hour turn around. Activists note that people living with HIV/AIDS are waiting months on waiting lists for services they need including over 300 waiting for housing. As trucks roll out to fill pot holes, outreach efforts and HIV/AIDS programs are being cut at the Whitman-Walker clinic.

This week the District released data showing that DC clearly has the highest HIV rates in the nation and, were it a country, the District would rank 23rd in the world between Nigeria and Rwanda in HIV rates. Rates for Black men now reach 7%.

“This report shows yet again that decades of racism and discrimination have resulted in racial disparities in the HIV epidemic,” noted Bryant who himself tested HIV positive in 1986. “We have to fight the racism, sexism and homophobia that continue in DC and stigma in our media, churches, clinics, and communities that blame people for their illness.”

DC Fights Back members commended the work of Dr. Shannon Hader of the HIV/AIDS administration but noted that no public health official could succeed in the face of this kind of epidemic without relentlessly strong political leadership and sufficient resources.

“AIDS is not a just a health crisis—it is a political crisis,” said Kerr. “DC is the capital of the wealthiest nation in the world: we will no longer stand by while bureaucracies get in the way of care and politicians make statements of outrage that aren’t backed by emergency action and money.”

DC Fights Back (DCFB) is an all-volunteer network of activists, people living with HIV/AIDS and allies in DC.

More info: www.dcfightsback.org.

PHOTOS
http://www.facebook.com/home.php?ref=home#/album.php?aid=18513&id=1082470202&ref=mf

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

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.

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

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.

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 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

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 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

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This page contains a single entry by Peter Staley published on March 23, 2009 3:24 PM.

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