Last week Governor Cuomo and Mayor de Blasio reached an agreement that will have far-reaching effects on low-income New Yorkers living with AIDS who qualify to receive rent assistance from the City. It reverses a decade-long injustice that was created by the Giuliani Administration and continued through Mayor Bloomberg’s time.
In federally subsidized housing or rental assistance programs, low-income tenants are required to pay 30% of their income (usually from SSI or SSD) as rent. Ten years ago, the Giuliani administration found a loophole and began to take up to 70% of the disability income of people living with HIV/AIDS, leaving most with $330 a month or $10.84 a day to pay for everything else – groceries, clothing, transportation, laundry, household and personal hygiene items and all the other things necessary for day-to-day living.
This issue immediately became the rallying point for many people in the HIV/AIDS community. Led by VOCAL-NY and others, activists sprang into action getting support from NYS legislators led by Senator Tom Duane, Assembly Member Deborah Glick and City Council members led by former Speaker Christine Quinn, to pass a bill that established a 30% rent cap. The community was jubilant.
I was at the victory party celebrating the win when former Governor Patterson’s staff called to say that despite all the work, he vetoed the bill after pressure from the billionaire Mayor Bloomberg. Celebration quickly turned into despair. It was a moment that I will never forget. In 2010, I participated in civil disobedience along with 17 other colleagues including former Senator Tom Duane, Charles King of Housing Works, and Kimberly Smith of Harlem United and others to protest Governor Patterson’s veto. While our arrests were largely symbolic, it sent a message that we were not going to stop until this terrible social injustice was reversed.
James W. Lister, a former business owner, is one of the people directly affected by the lack of a rent cap. I invited him to share his story. James worked for 35 years before becoming disabled from complications of AIDS. He reluctantly applied for disability and, after a very humiliating process, was finally awarded approximately $1060 per month in disability benefits – a system he had contributed to all of his adult life. While $1060 monthly is very little in NYC, he knew he could survive and pay the rent on the apartment he has lived in since 1979. Then the City dropped the bomb that would change James’ life. They budgeted him from $1060 to $330 monthly – less than $11 per day.
James shared this with us:
I decided, by the time my status had progressed to full-blown AIDS and I had lost over 200 friends, acquaintances, and intimates, I would not die before my parents. Given the parameters of my hard-earned entitlement of $10.84 day, I stopped every aspect of living except for the necessities: bath soap, shampoo, laundry soap, fabric softener, the cost for washers and dryers, toothpaste, toothbrush, mouth wash, dental floss, dish sponges, dish washing soap, light bulbs, telephone, cable TV, internet, transportation to (the increasing list of) doctors’ appointments, co-pays and deductibles for doctors and tests and for (the increasing number of) prescription medications. I was not going to die or become homeless. Before AIDS I had saved up for vacation, now it was shoes.
Unfortunately, sacrificing everything in my life, including haircuts, shaving, deodorant, new sheets and towels when they wear through, did not go far enough and I was forced to collect bottles and cans for cash to survive. I had already started wearing clothes from friends who had died.
I constantly lived in the very unhealthy state both from AIDS and the relentless fear I could fall behind in rent due to an emergency expense. I could not bear to lose the apartment that has been my home since July 1, 1979.
My medication regime had grown from three medications two and three times a day, to 30 medications one and two times a day, plus a weekly injection. There are two and a half shelves in my kitchen cabinets that are devoted to managing my medications. I knew I couldn’t do this if I was homeless.
But things got worse. My Mother died on April 4, 2009 in California. I could not afford the plane fare to attend her funeral or bury her. My Father died on January 30, 2011. I could not bury him either.
Being forced by the City to pay more than 70% of my disability robbed me of so much – things that most of us take for granted, like the ability to buy a newspaper or meet a friend for dinner, the ability to buy new pants when the old ones wear out or stock up on groceries when bad weather is predicted – but when it took away my ability to properly mourn the death of my parents, that was the final straw.
I’ve worked alongside VOCAL-NY, Bailey House, Housing Works, GMHC and other groups to demand that the city and state cease taking a lion’s share of the benefits I earned as a taxpayer for so many years. If 30% was the standard in most federally subsidized programs around the nation, why did NYC have the right to be so greedy and lawless? I never asked for them for anything more than I was entitled to by law. This week’s victory is welcome but bittersweet. I’ve lost so much, it will take time to reconcile how much I and others have suffered.
What’s next? Getting the 30% rent cap has consumed much of my life for over a decade. While I look forward to the first time my income goes from $330 a month to $927, I know that there’s still a lot to fight for. Housing is key to stopping the epidemic. The homeless are 10 times more likely to become infected. Stable housing is vital to helping those of us who are already infected to have access to care, manage our medications, and get mental health and other services so that we can live whatever time we have to the fullest.
Already I can start to dream of the future – something I never let myself do before when I was constantly pennies away from homelessness and complete poverty every day. Now I can let myself plan to be there when my nephew Joe, who is in 5th grade, graduates from college. I wasn’t able to bury my parents but I’m damn sure I will be there to see and celebrate the youngest generation of my family. And when I get my first check for $927, I may even go to California to visit my parents’ grave.