Map of life expectancy at birth from Global Education Project.

Monday, April 18, 2005

Disability Rights (and Wrongs)

I was fortunate to be a student of the late Irving Kenneth Zola. Irv was one of the founders of the sociological study of disability, and of the very non-academic disability rights movement. He had multiple disabilities himself, but as a young scholar it hadn't occurred to him that his disabilities constituted a social status or that they suggested a field of study. This awareness really grew out of his much broader work in the sociology of health and illness.

Irv discovered in his dissertation research that physicians are influenced in their diagnostic labelling by patients' ethnicity and gender. Then he made substantial contributions to the sociological theory of illness. He was hired to document a Boston community called the West End prior to its destruction in the name of urban renewal. He discovered that there was a sharp increase in diagnoses of disease -- including psychiatric disorders and hospitalizations -- among West Enders in the diaspora. But it wasn't because of post-traumatic stress disorder. It was because their new lives could no longer accomodate their physical and mental conditions. People lost their natural supports: neighbors and extended families who offered mutal assistance and accepted their oddities; local businesses that doubled as places for social contact, or let the mentally disabled daughter pick up groceries to be paid for later; employers who had gradually accomodated to progressive physical limitations over the years.

I suspect, although Irv never explicitly connected the dots, that it was this experience which him to the insight that disability is not a property of individuals, but a function of the interaction between individual and society. Wheelchairs would not be confining if the built environment wasn't filled with curbs and steps. Blindness would be much less of a limitation if we didn't depend so heavily on visual means for recording and trasmitting information. Even more important are attitudinal barriers. If we are uncomfortable around people with disabilities, or make assumptions about what they cannot do, we are discriminating. In fact, ability and disabilty are continua, ultimately social constructions. (After all, I'm severely disabled compared to the Boston Celtics, if the standards of ability are defined by NBA scouts.)

As I can confirm from teaching medical students, young people today generally have no idea how much the world has changed thanks to the disability rights movement and the Americans with Disabilities Act. It was once unusual, indeed almost unheard of, to see people in wheelchairs on the city sidewalks, working in offices, shopping, eating in restaurants, going to movies and concerts and ball games. People diagnosed with mental retardation were locked up in institutions that the courts would not have condoned for criminals. Today, these same people would be living in their own apartments, working, dating and getting married. Our physical environment and our attitudes have changed so radically it's difficult to imagine the United States of only 30 years ago. Of course, we have much further to go and most of the world has even further.

I was surprised and saddened, then, to see a faction of the disability rights movement coming forward to endorse the cynical, hypocritical campaign of religious charlatans to prevent Michael Schiavo from making decisions about the treatment of his brain damaged wife. The fundamental principles of disability rights are equality, empowerment, autonomy. Society and each one of us should honor everyone's potential, value and support each of our strivings. These principles, sadly, did not apply to Terri Schiavo. Although her parents could not accept it, empowerment, autonomy, potential all were lost to her 15 years ago. Her husband did his best to honor her autonomy by respecting what he understood to be her wishes. Certainly the choices of what appliances should invade our bodies, how and whether our lives should be sustained, are in the bedrock of our autonomy.

The choice for Terri Schiavo to die was not based on any prejudice against people with disabilities, or failure to recognize her worth and potential as a human being. It was based on an honest assessment of her situation. It poses no threat and in no way devalues people with severe disabilities who, as moral agents, lead lives of meaning and purpose in spite of physical obstacles and prejudice. The disability rights movement's most important contribution to the culture was in making us define human worth and dignity in new ways. Asserting that human worth and dignity accrue to all human DNA in living cells, even where there is no human consciousness or agency, is to deny and defile everything Irv struggled for.

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