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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.

See Also
10 Black HIV/AIDS Advocates Who Are Making a Difference
More HIV Activist Profiles and Personal Accounts

Reader Comments:

Comment by: Harvett (East cleveland, OH) Mon., Sep. 21, 2009 at 12:23 pm EDT

I truly think that they want people to die with no dignity, This horrific disease is so political, they need to stop covering it up and cure this disease. I have watched too many people suffer with this.
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Comment by: Anthony (Fort Lauderdale, FL) Mon., Jul. 27, 2009 at 7:45 pm EDT
I cried when I watched Senator Duane scream my pain. As an HIV positive man, I find it painfully true that the world has become complacent with HIV/AIDS. Do they (the world in general) realize that we are dying? Not just the gays. Not just the Blacks. Not just the non Christians, but the world. I have been fighting this disease for 14 years. I needed help for 7 years and could not get it. I sold all my possessions and almost took my life from the pain and frustration, not just physical but emotional as well. I am very open about my status and am doing what I can with what is available but need others to come to the front line, say yes I am HIV +. They need to tell the world that it is not only the disease that kills but the treatment, the loss of physical self, the emotional burden, the constant pain, the loss of friends,the loss of family and pure ignarance and failure to recognise the impact of this disease. I created a social group for HIV + gay men here and openly welcome those that are not positive so that we CAN educate. I welcome all discussions regarding my status and keep nothing private. I feel it is my responsibilty to teach and to bring awareness to where there is not.
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Comment by: Scott Berry (Bangkok, Thailand) Mon., Jul. 27, 2009 at 3:35 pm EDT
I was also touched by Senator Duane's speech and his story. Like Bonnie and many who've commented here, his speech reminded me of times past and friends/family lost in horrible circumstances. My deepest respect to all of you. Senator Duane's speech was powerful not just because of the anger expressed but also because it was carefuly timed. He delivered the speech in the midst of political powerbroking that was undermining the success of the Bill. He realized that those around him had lost sight of the immediate and genuine hardships of PLHIV (if they were ever aware of it in the first place). His choice to use anger was wise and considered - he put the hardships of PLHIV in the foreground and achieved the passing of his Bill. I fear that without that sort of wisdom, anger and fury can be a self indulgence that we can little afford - they get 'old' very quickly and may ultimately achieve nothing (at best) and the opposite of what we're aiming for (at worst).
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Comment by: Brian (CT) Thu., Jul. 23, 2009 at 10:20 am EDT
Yes, you are right we all need to scream. Let's stop talking, and start being about it (A CURE).
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Comment by: John A. Frederick (Albany, NY) Thu., Jul. 23, 2009 at 9:02 am EDT
Senator Duane's passion is something that we don't hear, see or have enough of, that is for sure. I am proud that he is representing me, and so many others with HIV/AIDS in the NYS Senate. He is a tireless and vigorous advocate for us, and for others who have no voice.

Now as the new Chair of the Senate Health Committee, he has new found responsibilities and abilities to make positive changes in our lives. We are so blessed to have him standing up for us every day, not just in this speech, but every day in so many ways that people don't even know about! He is a hero of mine, that's for sure.

To be fair to the people behind the Senator, this speech was given about 3:00 in the morning, after they had already been there late the night before.
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Comment by: alivenkickn (Darmstadt, Germany) Thu., Jul. 23, 2009 at 8:59 am EDT
This speech is really touching. I never heard anything like that before.

Tom Duane is a very coureagous man - my deepest respect!
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Comment by: Michael (Cologne, Germany) Thu., Jul. 23, 2009 at 4:20 am EDT
Good to have him in global activism against HIV/AIDS. I am very touched and feel deep respect for Senator Duane. It is so important that people with HIV/AIDS themselves speak out.
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Comment by: Richard (concord, NH) Wed., Jul. 22, 2009 at 9:05 pm EDT
Many years ago, long before Senator Duane, a courageous young NH State Representative revealed his HIV status on the floor of the NH House during a debate on an anti-gay marriage bill.

This Representative, Corey Corbin, made, as reported by the Concord Monitor Newspaper, one of the most touching, poignant and heartfelt speeches ever uttered on the floor of the House.

I don't know where Corey Corbin is now, but I do know, having heard him speak several times, that the HIV / AIDS community may have no better spokesperson than former Rep. Corbin.

I wish someone connected with an HIV / AIDS advocacy group would find this pioneering man and get him on board!
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Bonnie Goldman

Bonnie Goldman

Bonnie Goldman was TheBody.com'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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