Twenty years ago, when 30,000 people with AIDS were at risk of dying homeless on the streets of New York City, AIDS housing activism was born. “In 1988, activists took over the Human Resources Administration Commissioner’s office [in New York City] to demand they honor an injunction to take a plaintiff living with AIDS out of a shelter and put them into single-room occupancy housing,” Charles King, cofounder and CEO of Housing Works, explains. In 1990, Housing Works grew out of ACT UP/New York to provide housing, job training and other services while organizing homeless people with AIDS to fight for their rights and survival.
Now, a coalition of activist groups led by the New York City AIDS Housing Network (NYCAHN), Gay Men’s Health Crisis (GMHC), and Housing Works – the HASA For ALL campaign – is fighting to expand the city’s unique guarantee of rental assistance, a nutritional allowance, and transportation for people living with AIDS to all low-income New Yorkers living with HIV.
The HASA For ALL battle began in 2006, when activists successfully pressured the city’s health department to release data on the health of homeless adults. AIDS was the primary cause of death for women in the shelters and the second leading cause of death for men, accounting for 11 percent of all shelter deaths. But people with AIDS weren’t supposed to be in the shelters. A 1998 lawsuit brought by activists guaranteed medically appropriate, same-day emergency housing assistance to homeless people with an AIDS diagnosis through the city’s HIV/AIDS Services Administration (HASA).
|About 700 AIDS activists demonstrate in support of HASA For ALL at New York’s City Hall, September 25, 2007 (photo courtesy of Housing Works).|
According to Sean Barry, co-director of NYCAHN, the problem is that “people who didn’t have an AIDS diagnosis and didn’t qualify for HASA because of that are dying because the bad conditions in the shelters worsen their health so quickly – before they can go through the bureaucratic process to get HASA benefits once they do get sick.” Housing Works estimates that 7,000 low-income people living with HIV would benefit from HASA For ALL, including an estimated 800 individuals in the shelter system.
“It took me two years to get on HASA,” Alan Perez, coordinator of the Legislative Action Group at GMHC, says. “I had to stop taking my meds just to get on it. A lot of people are doing something to get sick, especially people who are in the shelter system. They should be in permanent housing.”
The irony that people with HIV who are doing relatively well are making themselves sick just to get needed help is not lost on activists. They developed a cost-benefit analysis revealing that, despite an estimated $68 million per year price tag, HASA For ALL would save the city money in shelter and hospital costs, keeping people with HIV healthy – and preventing as many as 66 new infections each month.
Assisting People With and Without HIV
The idea is a sort of “prevention for positives” approach, but activists appreciate that HIV negative community members need permanent housing as well to protect themselves from HIV and the many other hazards of being homeless. Young trans and gender non-conforming people, as well as men who have sex with men (MSMs), are especially vulnerable, explains Johnny Guaylupo, intake outreach coordinator at Housing Works.
“Many trans people don’t get services – they’re rejected because the services aren’t trans-friendly.” Guaylupo says. “There’s only one shelter for LGBT people [in New York City], with 17 beds.” He explains that trans people and MSMs rely on their social networks for support. “One friend may be eligible for HASA and get an apartment. Other friends stay there, and they have to provide some contribution. Some end up going to sex work. Often there are drugs involved – cocaine, crack, crystal. And they earn more money if they have unprotected sex.”
|NYCAHN’s Shirlene Cooper and Charles King of Housing Works speak on the steps of City Hall as HASA For ALL legislation is introduced inside, January 30, 2008 (photo courtesy of Housing Works).|
Trans and gender non-conforming people are even more vulnerable while transitioning from living as one gender to another, a period during which they particularly need quality healthcare. “Friends call me and say, ‘I hear that Housing Works has a transitional housing program,’ but I have to tell them it’s only for people with HIV. If they had stable housing, they could take care of their transition and focus on their healthcare. Illegal hormones are not safe, and [without healthcare] trans people are not getting tested for HIV on a regular basis.”
As a teenager, Guaylupo needed HASA himself. “My grandma raised me,” he says. “I had gone through a transitional moment as a teen by saying ‘I’m gay.’ My grandma couldn’t handle it. I went to my aunt’s, my mom’s. I tested positive for HIV at 17 and tried to commit suicide. I was working at McDonald’s as a manager, and sometimes I was up until 4 am there. When I was 19, I was given an AIDS diagnosis. I got housing assistance to pay for rent so I could [quit my job and] go to school. I did two years of college. Some people may need it just for a little while, to get back to the life they had before.”
New Yorkers with stories like Guaylupo’s are organizing all over the city to demand HASA For ALL. Guaylupo works with members of a day treatment program in East New York, Brooklyn, training them in community organizing skills, leading discussions about HASA For ALL, and taking the group to demonstrations. Perez talks to clients who were turned down for HASA because their CD4 cell counts were too high and brings them to City Hall to advocate.
Shirlene Cooper, co-director of NYCAHN, says, “All of our members know how to speak to the media and elected officials. It’s best to have the person who’s directly affected tell their representatives what they need.” A formerly homeless woman living with AIDS, Cooper was trained years ago in NYCAHN’s POWER Academy (People Living with HIV/AIDS Organizing for Welfare Equal Rights). “I was able to be the spokesperson, and I was able to pass that on. All of our members can do that extremely well, after going through POWER Academy. They can organize better than me.”
Disappointing Opposition from a Presumed Ally
But Mayor Bloomberg and the health department oppose HASA For ALL, saying there isn’t enough money. Even Christine Quinn – the speaker of New York’s City Council, whose support activists had every reason to expect based on her longtime support of AIDS housing activism – opposes the HASA For ALL legislation. Last September, Quinn released a statement that said, “I am concerned this bill could set a wide-ranging precedent that would require additional costly benefits, diverting limited resources to an unnecessary mandate instead of allowing us to target funds where they are most needed.”
“We met with Speaker Quinn three times,” Cooper says. “She said it cost too much, so we showed her the cost analysis. She said she didn’t know if housing was a prevention tool, so we asked Angela Aidala, associate research scientist at Columbia University, to do a presentation for her – and we even got David Holtgrave, a former senior CDC official, to meet with her.”
With sponsorship by City Council member Annabel Palma, the bill is now being introduced. Cooper believes that it can pass even without Quinn’s support. “If we get at least 35 of the 51 council members to support it, there’s nothing she can do. I spoke with my councilmember and told him that my community in Brooklyn has the highest rate of HIV/AIDS among African American women in the country, and I’m one of those statistics. I said, ‘This is your borough; you need to come out and support this.'”
New York City may be the major U.S. battleground where housing as a vital part of HIV prevention and treatment is being fought for – backed up by substantial, convincing research. One thing is for sure – activists around the country and the world are paying close attention, knowing that the New Yorkers’ experiences with this fight will provide many useful lessons for their work.
“Go to the NYCAHN website or contact me,” Cooper suggests to organizers who want to learn from the campaign’s efforts. “We’re willing to give any support we can. We’ve had a lot of groups come here, sit in on our trainings, and visit welfare centers with us. New York is the only state with HASA, so we show visitors what the single-room occupancy housing is like.”
In addition to HASA For ALL, NYCAHN is working with the new Anti-Gentrification Network in New York City, along with FIERCE, the transgender, lesbian, gay, bisexual, two spirit, queer, and questioning youth of color activist group, FUREE (Families United for Racial and Economic Equality) and Organizing Asian Communities. The Anti-Gentrification Network is affiliated with the Right to the City Alliance, which formed nationally at the U.S. Social Forum last year “to build a united response to gentrification and the drastic changes imposed on our cities.” Led by local groups, the Alliance, in turn, is connected with international struggles for human rights and democracy, and against displacement.
Like HIV, homelessness is stigmatized as if it’s an individual failure. Right-wing talk of “personal responsibility” has obscured the connections between lack of housing, free-market policies and social neglect. But activists are pushing for big changes to prevent both homelessness and HIV. “New York is becoming way too expensive for low- and moderate-income residents,” King says. “This is happening all over the city, not just in Manhattan. People get forced out of housing that becomes more expensive. This is not going to be addressed purely through the market – government and civil society need to step in and create places for people to live.”
The HASA For ALL campaign meets on the last Monday of every month. Organizations, low-income HIV positive New Yorkers, and their allies can join the campaign. For more information or to get involved in the effort, call Shirlene Cooper at (718) 802-9540 x.18 or e-mail cooper (at) nycahn.org.