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Thoughts on NY State Senator Thomas Duane's Impassioned Speech on Behalf of People Living With HIV

By Bonnie Goldman

July 22, 2009

I was somewhat active in the HIV activist organization ACT UP in the early 1990s. I witnessed ACT UP's continually inventive, passionate activism in packed weekly meetings at Cooper Union in the East Village in New York City. At these meetings, deeply committed people came up with ways to rectify injustices. Every week, a new series of actions were planned. It was inspiring to be involved, particularly because many of our actions had the intended effect.

I was brought back to those times this month by none other than New York State Senator Thomas Duane -- New York's first openly HIV-positive, and first openly gay, state senator. A recent video of a speech he gave on the floor of the Senate is being passed around the Internet. When I began watching it, I was immediately mesmerized. In it, Duane tries to convince New York's State Senate not to kill a bill meant to help low-income people living with HIV. The bill states that people who are living with symptomatic HIV or AIDS, and who are receiving housing assistance or an emergency shelter allowance, will not be required to pay more than 30 percent of their income in rent and utilities.

According to the HIV/AIDS advocacy organization Housing Works, "Poor people living with HIV in New York who receive housing assistance are being forced to put all but $330 of their monthly income toward rent. The lack of a rent cap leaves tenants $11 a day to live on. No other New Yorkers receiving rental assistance are forced to pay such an onerous share of their incomes."

While I listened to Duane spit his words out in bitter anger, I kept on thinking: We need more people like him.

  • We need people to scream and yell about the number of women with HIV who are dying -- the clinical term is "lost to care" -- in Mississippi, Brooklyn and elsewhere, after they successfully have HIV-negative babies. I don't know if I can handle covering another study that demonstrates the shameful lack of care for people living with HIV in the U.S. South or in the inner cities. When will money and resources go to help these people?
  • We need people to scream and yell about the fact that the majority of people in the developing world who need HIV treatment are still (!) not getting it -- and that the majority of those people who are getting it are getting drugs that we in wealthy countries no longer use because they are too toxic, such as Zerit (stavudine, d4T).
  • We need people to scream and yell about homophobia -- particularly since the connections among homophobia, depression and HIV are quite clear. When will we be unafraid to teach kindergarten children that it is OK if someone is gay?
  • We need people to scream and yell about the fact that teen girls throughout the U.S. still can't negotiate sexual safety because, 25 years into an HIV/AIDS pandemic, we're still too puritanical to teach them the facts of life in plain English.
  • We need people to scream and yell about the insulting music videos that convince young men that prison culture is cool, that knocking up girls is cooler and that their sexual partners should all be passive objects who don't require the consideration of condom use.
  • We need people to scream and yell about women's equality in the U.S. and globally, and to take a stand so that the dream of women's empowerment can be realized. (Jimmy Carter's recent, eloquent speech makes this point beautifully.)
  • We need people to scream about the fact that HIV/AIDS stigma is prevalent everywhere and no one is doing anything about it. Most people living with HIV in New York, in the U.S. and around the planet do not share with their friends and relatives that they are HIV positive because they are afraid of being treated badly by an ignorant world.

Was Tom Duane overindulgent? Yes. But in his ranting he touched on so many critical issues that desperately need to be remembered and acted on: the early years of HIV, when hardly anyone would even touch someone with HIV; the still-abysmal state of HIV care in U.S. prisons; the urgency of increasing affordable housing for people with HIV.

He ranted and raved -- and, ultimately, he moved his fellow New York state senators out of their stupor. They voted for his bill (although it still must pass the State Assembly, and then the governor has to sign it).

But the approval of the bill is beside the point. It's Tom Duane's passion that caught so many people's attention, since it is a rare passion. Look at that video: As Duane's diatribe goes on, you can clearly see a bored man and chatty woman sitting behind him. They are visibly unmoved by this screaming man. They are unmoved by his emotion -- and maybe even by the predicaments faced by people living with HIV.

Their obvious boredom reminds me of the many times I tried to inspire others, even my relatives, to AIDS activism. In response, I got the same bored, dead looks. This was a subject that they clearly were not moved by. For them, HIV happened to "other" people -- and these "others" were not their kind.

HIV/AIDS remains a cause that doesn't move many people. And really, it never did, even back in the late 1980s and the early 1990s, when hundreds of thousands of people in the U.S. died from AIDS. Even when I dragged my dying brother around from doctor appointment to doctor appointment, few outside the medical profession were moved by his predicament when they discovered that he was infected with HIV.

This is still true today. In the malls of America, there is no one collecting transportation money to help poor Southern women afford a life-saving check-up at their local AIDS clinic. No one is tabling in U.S. malls to help gay teens -- many of whom are filled with self-hatred because of our homophobic society -- learn sexual negotiation skills. We live in a country where our leaders tell us to shop, rather than to advocate, stand up for injustice, scream, yell and change the world.

Even as the deaths from HIV have abated in the U.S., even as HIV becomes more effectively treated, it's still a disease that not many people are moved by. And as HIV/AIDS decimates many parts of the former Soviet Union, Africa, Asia, and the Caribbean and beyond, most people in the U.S. couldn't care less.

As I sat and listened to Tom Duane, I watched that bored man behind him. His face remained expressionless as Tom Duane spat, "You're not killing my bill, you're killing people!" AIDS activism needs more Tom Duanes. We need Tom Duanes to set fire to our HIV prevention efforts and to finally address HIV in the South and in the inner cities.

We need Tom Duanes to change the future of young women and young gay men coming of age in the era of AIDS, but who are being blindsided by a pandemic that we've forgotten to explain to them, much less taught them how to survive.

We need Tom Duanes to inspire young people to not only care about HIV in their own lives, but to be moved by the tragedy occurring overseas.

We need Tom Duanes to restore an urgency to HIV/AIDS activism that is sorely needed, but that was long ago lost.

To read more about Tom Duane's New York State bill, read this article from Housing Works.

To take action on housing for people living with HIV/AIDS in New York City -- the epicenter of the U.S. epidemic -- click here.

Copyright © 2009 Body Health Resources Corporation. All rights reserved.

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On My Mind

Bonnie Goldman

Bonnie Goldman

Bonnie Goldman was's editorial director from its founding in 1995 until January 2010. Previously she was a book editor, journalist and HIV/AIDS activist.

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