Being Poor Is a Full-Time Job: A Narrative of Applying to Be Disabled

It's funny. It's actually easier to live with HIV/AIDS than it is to deal on almost a daily basis with the systems and the individuals employed by those systems that are "helping" me and others living with this disease. Although I am not happy to have this disease, I have come to various realizations about HIV/AIDS. I have been living with it for more than twenty-five years. AIDS and its physical consequences I can handle.

The health-care discussions/debates/dramas are concerned with the future of health care in the United States but I see little discussion about the present system. The issues are framed about insurance and access to healthcare but precious little speaks about the quality of the healthcare system now. Also I see little about the surrounding service systems, including the public assistance/benefits systems that can be an integral part of the health-care system. Call this my small part (a rock thrown in the name of "the cause") in this discussion.

Public health care is a means of managing populations. Foucault describes this process of population management in the current era as "governmentality." Governments, therefore, are "no longer essentially defined by its territoriality, by the surface it occupies, but by a mass: the mass of its populations."¹ The mechanisms to control and manage this mass include government agencies, policies and processes that record and intervene in these lives, including public health, education, and health care. I write this narrative in the context of the struggle for the Affordable Care Act in the United States, as I applied for years to be labeled "disabled" and therefore able to access benefits and social support systems.

Through the Rabbit Hole

Not too long after the turn of the century, I stopped working at a regular job. I had labored in the fields of nonprofit for most of my working history. Several things came together in what one could call my own personal "perfect storm." Unemployment, several out-of-the-blue health crises, an intense personal drama or two, and a subsequent severe depression made me decide to leave those fields of professional endeavor. I was planning a relatively content single life blissfully unconnected from any sort of politics and community involvement in a large apartment with two cats, a few ghosts, very little money, and lots of books and music. I was depressed and couldn't find work. When unemployment ran out, I went to the HIV/AIDS Service Administration (HASA).

The entire public assistance system was not new to me. I had grown up surrounded by people on disability or welfare. Yes, I remember hiding from the social worker, translating for my grandma who did the Latina old lady act (she acted as if she didn't understand English even though she taught me to read … in English). I also remember the food: the lunch meat, the powdered milk, and the brick of cheese. Once a month, they would set up distribution in the laundry room of the housing projects I grew up with. Crates of cans and boxes of stuff with generic labels. I did have some familiarity with the system. At least, I thought I did.

This time around, there had been some changes. First, I had to go to the offices in midtown Manhattan. I thought this was an improvement from the dirty-walled, claustrophobic, and thoroughly unprivate meeting spaces I was used to. Instead this space had a large institutional green-colored waiting area that had both the air conditioning and CNN blasting all the time. You were never allowed to lower the volume or change the channel.

AIDS is no longer a disease of beautiful gay men tragically wasting away. That waiting room is filled with, on a good day, people with severe mental illness, people with a frightening concept of fashion, people with a unique grasp of the English language, people with appalling hygiene, and people with serious drug and alcohol problems.

I do understand a little of my HASA caseworker's pain...