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Action = Life

Who Speaks for the AIDS Community?

March/April 2005

A note from The field of medicine is constantly evolving. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

Jeff Graham
The simple answer is, You do. We all know that HIV is not a one-size-fits-all disease. Therefore, isn't your view just as valid as my view, or the view of anyone else whose life and work revolves around HIV?

Even though our community is built upon the self-empowerment of people living with HIV, most people will answer that question in a very different way. They will point to someone associated with a specific AIDS-related service organization, or the person who has the loudest voice, or the person who's the easiest to get along with, or even the person with the biggest check-book, as the designated speaker for the AIDS community.

This question has been a hot topic of conversation among advocates since this past election. Charges abound that certain organizations are in the pocket of the pharmaceutical industry or that some organizations are using partisan politics to silence the voices of others or are preaching messages based more on pandering to a specific ideology than in speaking truth to power. How can everyday people find their voice to speak out on AIDS while empowering our agencies and institutions to support us?

While these conversations are as old as the AIDS activist movement itself, recently these conversations have begun to take on a new intensity. Ensuring that responsible spokespeople are speaking to our issues has never been more important than in this time of waning support for domestic HIV issues, reduced government and philanthropic funding, and a desire among the general public to move its attention to the next disease. The conversation then becomes one of determining which people speaking out on AIDS are the most responsible in representing a community whose diversity is unlike any other.

The answer lies not only in who demands rights, but in who is willing to take responsibility for maintaining them. It's always much easier to complain about a problem than it is to roll up your sleeves and try to solve it. It's also about maintaining a certain amount of legitimacy. Is someone's opinion formed out of habit, or by talking to a variety of people and listening to what they say? Are the advocates using their personal experiences as a starting point to look at the multiple issues affecting the HIV community, or are they looking only to get their own needs met? Are people who actually depend upon government-funded services being consulted in crafting both legislation and legislative strategy?

These are the questions that people living with HIV must be asking of those individuals, agencies and institutions that claim to speak on your behalf. Don't be afraid to hold us accountable when you disagree with what we say. That is the best way to keep your spokespeople responsible. But don't forget to speak out yourself. That is the best way to get others to listen.

Creating a United Response -- The Campaign to End AIDS

In an effort to address both the concerns of the current state of AIDS advocacy in this country as well as make room for a new generation of activists, more than 120 energized activists from 25 states and the District of Columbia participated in an intensive two-day planning summit in early January. The outcome of this summit was a call to organize the Campaign to End AIDS. According to HousingWorks, one of the organizations that sponsored the summit, attendees at this historic summit organized around an answer to the following "big question":

How do we draw upon our collective wisdom, strength, passion and drive to structure, implement and deliver all that is needed to bring into being the March to End AIDS in a manner that revitalizes and mobilizes the AIDS activist movement across the United States?

Although many details about the outcome will be determined by a series of workgroups formed at the summit, organizers did decide on some specific timelines for action. First: to build support for this year's annual AIDSWatch, May 2-5, in Washington, D.C., and then use that as a springboard to organize an even larger national action in late September and early October. The campaign is off to a strong start with the hiring of seasoned organizer Susan Birmingham as the coordinator of this effort and the release of the following outline of activities for both this spring and next fall:

1. AIDSWatch Events

  • A super-charged AIDSWatch is envisioned in May 2005, whose goals include getting at least one person living with HIV from every state and territory.

  • AIDSWatch will include a half-day advocacy toolkit training on organizing for activities to take place in October.

  • A public demonstration will occur; working details describe the "Walk a Mile in My Shoes," where thousands of shoes of positive people from around the nation will be delivered to an appropriate target.

  • Participants should plan to be in D.C. from Monday, May 2, through Thursday, May 5, although congressional visits will be completed by Wednesday, May 4.

2. October Events

  • Caravans will be organized leaving various parts of the country in late September to arrive in the nation's capital by October 8, where a variety of activities will occur.

  • Activities in Washington, D.C., include advocacy training, a concert, direct actions, demonstrations and specific activities involving youth, faith-based communities, communities of color, etc.

Organizers are asking folks from throughout the country to take the initiative to help with planning this event. The organizers have established an e-mail list and are actively recruiting folks to serve on any number of committees that will be needed to ensure the success of the campaign. If you would like to learn more or become involved, please visit the Web site.

But First, There's AIDSWatch, May 2-5

AIDSWatch, a project of the National Association of People with AIDS (NAPWA-US), is the largest AIDS-related advocacy event in the United States. Each year, people living with HIV and their advocates come to Washington, D.C., for four days of training, networking and taking the needs of the AIDS community directly to members of Congress. The event centers on the belief that members of Congress must hear from people living with HIV and their allies about the importance of robust federal funding and support for domestic and global AIDS programs.

People living with HIV and AIDS have survived four years of essentially flat funding for all domestic AIDS programs. Global AIDS dollars have increased; however, the U.S. still provides far less than our fair share. Proposals to "reform" Medicaid will likely be on Congress' table. Fundamentalist ideology threatens to hijack HIV prevention programs, both here and abroad. The Ryan White CARE Act is up for reauthorization. Strong participation at this year's AIDSWatch is more important that ever before. With so many new faces in Congress and within the administration, getting the message out about the challenges facing the AIDS community will be crucial.

If you are interested in registering for AIDSWatch, please visit our Web site or contact NAPWA directly at While our plans are still being developed, AIDS Survival Project does hope to raise sufficient funds to provide a limited number of travel scholarships for AIDSWatch.

A note from The field of medicine is constantly evolving. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

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This article was provided by AIDS Survival Project. It is a part of the publication Survival News.
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