January #109 : Founder's Letter - by Sean Strub

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The English Patients

A Bitter Pill

2004 Fight for Our Lives

Strange Days Indeed

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A Shot in the Dark: The Flu-Vax Scandal and Tips

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The HIV Life Cycle

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What is AIDS & HIV?

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January 2005

Founder's Letter

by Sean Strub

A Christian Taliban has staged a coup d’état in our former democracy, reelecting George W. Bush along with an ugly cast of “moral values” crusaders, most notably Tom Coburn (Okla.) and Jim DeMint (S.C.). The political devastation will be profound and permanent, but the immediate damage will be felt most by people with HIV and those at greatest risk—the young, the gay, the addicted and poor people of color.

We know the road ahead will be difficult. The next four years are sure to further weaken science-based prevention efforts, such as condom education, in favor of religious dogma that holds the prospect of salvation higher than the potential for survival. Our AIDS service organizations (ASOs) will sink further into disarray, suffering from Bush’s funding cutbacks and program restrictions—and their own failure of courage. The moral responsibilities most HIVers recognize—protecting our sex partners against HIV by disclosure and/or condoms—will increasingly become law, subject to punishment if not met.

To make matters worse, many HIVers feel more isolated than ever from their communities, not to mention their ASOs, even as they face AIDS stigma greater today than at any time in the past 15 years. We are the pariahs, and we know it. It is open season on demonizing people with HIV, whether as serial-infecting “AIDS monsters” or the crystal-crazed gay dude with HIV or the junkie scrounging for a fix. Pick your stereotype—we’ll all pay the price. But if we feel isolated, even abandoned, by our community, we have also abandoned ourselves—by forgetting the history that enabled our survival. The single most important principle of PWA empowerment—codified in the historic 1983 Denver Principles—holds that people with the disease should be visibly involved in all aspects of policymaking as it relates to care, treatment, prevention and public policy. That was once an incontestable given—one we had fought and died for—and service providers, government agencies and politicians actually sought out our participation.

Today, that principle of inclusion is given a token head-nod but little substance, even by our leaders and allies. A prime example is John Kerry’s presidential campaign. Caught up in the belief that every specific progressive agenda needed to step aside in favor of a unified effort to defeat George Bush—and compelled by Kerry’s own courageous record and positions on AIDS—we went invisible. We were good soldiers, refusing our traditional place at the campaign’s policymaking table. That was a mistake. And it is a mistake we repeat daily, nationwide, where HIVer presence on the boards of the ASOs we founded has become little more than tokenism. If we do not control our organizations, we do not control our destinies.

It will be easy to rage at the Christian fundamentalists who claim moral superiority in making policies that will diminish, even destroy, PWAs. But more difficult—and useful—will be regaining our old influence in the national AIDS-policy debates, in protecting our interests, in pressuring our allies to battle our enemies in Congress and the White House. To accomplish this, we must be visible, we must be vocal, and we must participate in every decision affecting our lives. Reclaiming this power starts in the hearts and minds of people with HIV rather than in the appointment books and Rolodexes of executive directors and national leaders, no matter how effective and committed they are.

This political work must become, like taking our meds, a daily part of our lives—not every four years on Election Day, nor even at the occasional demo or ASO meeting. It is said that all politics is local. But for people with HIV, in the current emergency, all politics is viral. The empowerment we need must start at the most intimate level—in taking responsibility for our own health, for the health of our sex partners, our fellow activists, our ASOs and community, ultimately even our nation. For it is our nation. And we want it—and our power—back.

-- Sean O'Brien Strub, Founder, e-mail: seans@poz.com




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