Gotham Gazette

The Place for New York Policy and politics


Living With HIV: The Housing Assistance Myth

Vocal NY protest 2010

In 2010, the author, James Lister (left), was arrested protesting cuts to the 30% rent cap he discusses below

I am writing to tell you how it really is for one of the 10,000 New Yorker’s living with full-blown AIDS who qualify for rental assistance through the HIV/AIDS Services Administration (HASA).

After surviving the very drawn-out and humiliating disability approval process, imagine my surprise when I was told by HASA that my disability income would be “budgeted” at $330 a month, $10.84 a day. I was told “everyone” has that budget. Still, it did not make the reality of $10.84 taking care of every life expense, except rent, easier.

I decided that 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 anticipating these necessities are not up for negotiation: 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) doctor’s 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, and this was the way to make my hard-earned entitlement of $10.84/day work to that end. An extravagance I “saved up” for used to be something like a vacation, now it is shoes.

Unfortunately, sacrificing everything in my life, including haircuts and shaving, deodorant, new sheets when they wear through that some think are necessary, 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 about the time I applied for disability, but I still had to buy shoes.

I have constantly lived in the very unhealthy state of relentless fear I could fall behind in rent due to an emergency expense and lose the apartment that has been home since July 1, 1979.

My medication regime has 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 could not manage my medications being homeless.

My Mother died on April 4, 2009. I am a native of California. That is where my Mother died. I could not reconcile paying for an airline ticket to bury my Mother because I could not calculate how I would pay for the fare on $10.84 a day. I could have charged the fare to my credit card, but how would I make the payments and not be overtaken by the interest or pay that off and fall behind on my rent?

It was one of the worst days of my life when I was forced to make the decision that I, the oldest child and big brother to three, could not bury my Mother. My Father died on January 30, 2011. Even though the budget has increased to $12.36 a day, I still could not reconcile paying for airfare.

The expectation from what I was told while paying taxes for 35 years, and paying taxes twice as a sole proprietor for 20 of the 35 years, and paid compulsorily, not voluntarily, was there would be a safety net if the unthinkable happened. Well, the unthinkable did happen and that safety net, I am told, cannot support me. 

James Lister is a volunteer for VOCAL-NY.