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A Personal Perspective on New York City's White House ONAP Meeting

December 23, 2009

"New York taught the nation and the world how to fight," said actor and longtime HIV/AIDS advocate Rosie Perez. She was talking about the critical role that New York City has played in battling for the rights of people with HIV since the dawn of the HIV epidemic. She made her speech in an auditorium at Columbia University on Dec. 4, where she was setting the stage for a White House Office of National AIDS Policy (ONAP) HIV/AIDS Community Discussion. The auditorium was packed with members of New York's HIV/AIDS community -- providers of care and faith, deliverers of services and policy -- who had gathered to express their desires for what the U.S.'s first-ever national HIV/AIDS strategy should entail. I had the honor of being present at this meeting, enabling me to offer you a glimpse into what the experience was like.

A total of 15 ONAP-hosted HIV/AIDS community discussions took place this year throughout the country, along with one related community discussion at a national HIV/AIDS conference. was on hand for the New York City discussion, of course, as well as at the national HIV/AIDS conference in California, where we talked with meeting participants about their speeches and what they believe will be the results of the community discussion process. (You can watch videos of the New York City discussion on our site; the first part of the meeting is at the bottom of this page.)

The mood of the crowd for the ONAP meeting in New York City was reserved and focused. Attendees occasionally broke their game faces to share warm hellos with friends and colleagues, many of whom they likely rarely see outside of meetings and HIV/AIDS conferences. Up on the podium, the ravishing, no-nonsense Ms. Perez was preparing to moderate. She's been a committed HIV advocate for more than 20 years, lending her fame to further HIV/AIDS efforts from fundraisers to public service announcements to local New York protests.

As the moderator, it was Perez's job to keep things moving on schedule by making sure speakers did not talk beyond the 90-second window they were given at the microphone (a rule intended to make sure that everyone in the room who wanted to speak had a chance at being heard). Because Perez is well known and respected in the community, she had the authority she needed to occasionally mow down people's final few words.

Before the speaker portion of the evening began, Perez reminded her audience that despite New York's activist history, "Tonight is not the night to fight." This should be a night for sharing recommendations and solutions with the White House, she said, based on the community's unique, local knowledge. This was too precious an opportunity to use up with attention-getting protests or overly personal, confessional outpourings, she warned. Perez never forgot to thank people for sharing their experiences -- but, as she said in her introduction: "If you do get outta hand, I will be checking you." And we knew she meant it.

As the main event began, people rose from their seats to join the lines of hopeful speakers snaking down the aisles to each of the two microphones that had been set up in the auditorium. Not everyone heeded Perez's warning: There were protests, although they came as the silent raising of strongly-worded signs in the direct sight line of cameras videotaping the event. In addition, a number of people attempted to tell their own stories, though Perez intermittently reminded them, gently but firmly, to stick to offering solutions.

"People need families and communities to embrace and support them as well, and that impulse to embrace and support should come from the top."

Oftentimes, though, I couldn't help but think: The knowledge people have to share is their lived experience. It can't be winnowed down into a collection of statistics of which they're a part. The paths their lives have taken, and the systems they've come up against in the process, matter as much as the "solutions" they've been instructed to offer.

I felt the rawest emotional moments were also the most subtle: the small handful of instances in which someone got up and spoke from his or her own experiences as an HIV-positive person, perhaps for the first time ever. Like the gay, Italian immigrant in the "Campaign to End AIDS" T-shirt, who did not submit a concrete recommendation, but related the story of how his time in Italy and New York City was marred by systems (familial, medical, housing) that had either ignored, spurned or failed him. In cases like his, the speaker may or may not have offered a recommendation, but the takeaway impression was that person's courage in facing down stigma and speaking, sometimes in a barely audible voice, from his or her own truth.

Those speeches testify to the continued need to fight stigma and break the silence around HIV/AIDS, so that people won't feel so much shame that they're self-conscious about going to a meeting in an auditorium on a Friday night in order to be heard and validated. It's wonderful that President Barack Obama and ONAP are listening, because people need families and communities to embrace and support them as well, and that impulse to embrace and support should come from the top.

As full to the gills as the room was, Larry Bryant of Housing Works pointed out to me an entirely empty balcony -- large enough to contain care providers and their clients from every HIV/AIDS organization in the city, he commented. He also noted that most of the speakers were not "everyday" HIV-positive people, but rather people who worked at HIV/AIDS organizations. Though I don't doubt that it's important to point out who is absent and what is lacking from a meeting like this, I was still impressed at the range of testimonies that people made.

Buzz phrases were trotted out by multiple members of the same organizations. Representatives from the National Black Leadership Commissions on AIDS, for instance, spoke individually in support of H.R. 1964, the National Black Clergy for the Elimination of HIV/AIDS Act. The staff at Harlem United made sure the phrase "community viral load" would be on ONAP's radar. A lot of people talked about housing and the importance of "cultural competency" -- the ability to relate to people of different cultures -- in delivering HIV-related services and interventions. There was talk of support for needle exchange, nutrition programs and holistic health services. There was also a call for nationwide coordination of care between major federal agencies that serve people with HIV, such as the Department of Veterans Affairs, the United States Housing Authority and the Department of Health and Human Services.

"If there was excitement in the air, it was subdued -- like an internal fire the attendees dared not fan for fear it would go out."

There were reminders of issues that many of us may have forgotten. A speaker working in the Bronx spoke of the persistent importance of pediatric care: What will happen to HIV-positive kids as their numbers dwindle, thanks to current kids growing to adulthood (or, more and more rarely, dying) and fewer kids than ever being born with HIV?

There were nods to familiar contradictions, which were humorous at times only because of their familiarity and stunning irony. One man pointed out the number of erectile dysfunction drug ads a TV viewer is subjected to versus the sparse number of ads for condoms. Another tied the legalization of gay marriage to HIV prevention; he sardonically entreated "every single heterosexual here [to] practice safer sex and use a condom for the rest of your life with every single partner and never be allowed to get married."

There were advocates for the specific needs of older adults, Native-American communities and Asian-American communities. When Joseph Akima of APICHA (Asian & Pacific Islander Coalition on HIV/AIDS) took the microphone, an entire cadre of activists of Asian descent rose as a group to show their numbers and solidarity. Hispanic and African-American communities, incarcerated people, men who have sex with men, women who have sex with women, women who have sex with men, queer youth, sex workers, young sex workers -- representatives from all these communities were present, and if they weren't there, someone was there to speak for them.

If there was excitement in the air, it was subdued -- like an internal fire the attendees dared not fan for fear it would go out. As several speakers noted, this may have been because the HIV/AIDS community in New York is still in shock: After eight years of George W. Bush, in which abstinence-only education ruled the day and precious little attention was paid to the U.S. HIV/AIDS epidemic or its root causes, we now have a president who seems to actually care about and want to hear from the HIV/AIDS community in a substantive way. And while those in our community may rightly argue that Obama's schedule should be filled with HIV/AIDS-related activities until we put a firm, tight leash on the U.S. epidemic, the man is busy. He does have war, financial collapse and bickering health care bill-builders to deal with. He hasn't taken an excessive amount of vacation; he seems to be around.

Further, we have people in the White House who say they will listen and respond. Of course, if they don't, that will arguably be an even bigger punch in the collective face of the HIV/AIDS community than if this White House simply ignored the HIV/AIDS community for the duration of its administration. The HIV/AIDS community might be steeling itself for that big punch, because in our own ways we are all traumatized by how people in authority systematically neglect issues of importance to our communities. It would be pretty radical if the current administration proved us wrong.

So if, as Rosie Perez said when the meeting began, this wasn't a night to fight, then what was it a night for? The overarching theme of the majority of the evening's testimonies was: I'm here, White House, and so are my people. We have a stake in the fight against HIV/AIDS, and we need support in that fight. Maybe this time, the White House will listen, and respond.

What do you believe will happen next? Please add your comments about the community discussion process below, and stay tuned to for the latest on how HIV/AIDS advocates continue to hold ONAP accountable to the U.S. HIV/AIDS community. (In the meantime, feel free to watch our videos of the New York City ONAP meeting; part one is below.)

New York ONAP Meeting: Part One

This article was provided by TheBody.
See Also
More on U.S. HIV/AIDS Policy

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