The Right Not to Work: Power and Disability

Article excerpt

I have a confession to make: I do not work. I am on SSI. (1) I have very little work value (if any), and I am a drain on our country's welfare system. I have another confession to make: I do not think this is wrong, and to be honest, I am very happy not working. Instead I spend the majority of my time doing the activity I find the most rewarding and valuable, painting.

The very first thing that people ask me when I say I am a painter is "Do you sell your work? Are you supporting yourself?" I actually do sell my work, but I do not support myself from these sales. I hate this question and I feel ashamed no matter how I answer it. This is because I always feel like this question is a test; a test to see whether my lifestyle and hobby are legitimate; and money is the gauge of this legitimacy. Is money really where all value lies? Are my art and my lifestyle really less meaningful because I do not support myself financially?

Due to my disability (arthrogryposis multiplex congenita), I paint holding the paintbrush in my mouth instead of my hands; I use an electric wheelchair for mobility. When I first realized that due to my impairment I might be unable to work in a traditional job, I was worried about my financial future, but it never occurred to me to worry about my life's value as a "nonproductive" citizen. However, I think that I am unusually fortunate to have been raised with a belief in my own inherent value, because many disabled people seem to carry a deep "non-working guilt," even if they are successful in other areas.

This became even more apparent to me last September, when I participated in my first protest for disability rights. The event, a two-week, 144-mile march from Philadelphia to Washington, D.C., was organized by one of the disability movement's most prominent groups, ADAPT (American Disabled for Attendant Personal-care Today). ADAPT has been at the forefront of disability rights for over twenty years. This was not only my first action, it was also my first time to be completely surrounded by other disabled individuals. At first I was very intimidated. However, once I got beyond the panic of camping out in parking lots and traveling on the highways with two hundred of the most physically challenged individuals I'd ever met, I decided to use the time to research the disability movement and to hear other disabled people's perspectives. There were two points that came to fascinate me over the course of the march. The first was simply the lack of press our efforts received (we were barely mentioned by national news and virtually ignored by the left-wing media). The second was more subtle; it was the guilt I realized many activists felt for not working, even amongst those who were physically unable to have what could be considered a regular job.

Before they came to focus on institutionalization, ADAPT was at war with the public transit authorities. ADAPT (originally American Disabled for Accessible Public Transit), started as a project of the Atlantis Community (2) in Denver, Colorado, in 1983. Their goal was to make public transportation accessible to persons with disabilities, so that those people who had managed to live outside institutions could also participate in their communities. For seven years ADAPT blocked buses, closed off streets, and participated in numerous other forms of civil disobedience across the United States, to protest for the right to ride. ADAPT's peaceful direct action demonstrations eventually paid off when they helped to pass the Americans with Disabilities Act (ADA) in 1990, which requires that public transit be accessible. Clearly the next issue to fight for was attendant services, so that there would be more disabled people living independently in their own communities who would have the freedom to utilize the new lifts.

And that is what the September march focused on: the "stolen lives" of the nearly two million people who are currently "warehoused" in nursing homes and Intermediate Care Facilities for the Mentally Retarded (ICFMRs). …