Celebrating the ADA

Next July 26 will be the 25th anniversary or the Americans with Disabilities Act. It was actually signed by George Bush the First, although he had nothing much to do with it. Here Lawrence Gostin, in JAMA, calls it "the highest expression of American values." I'm not sure what "American values" are these days, but it is certainly a powerful expression of my values, and of Mr. Gostin's.

I entered the doctoral program at Brandeis University just as the ADA became the law. It took quite a while after that for the new law to have practical effect. In fact, what Gostin doesn't really tell us is that it required a social movement to enforce it's requirements. The ADA didn't change our culture, but it was a powerful tool in the hands of those who did. This is a story we scarcely remember today, because the disability rights movement was so successful.

My mentor at Brandeis was the late Irving Kenneth Zola, who you can read about here. Irv was a founder of the sociological study of disability - before he came along it was studied as a form of what sociologists call "deviance," and there was some interest in how people with disabilities were stigmatized. Medical sociology pretty much ignored them, with its focus on Talcott Parsons' concept of the "sick role," which included the obligation to get better and resume one's work and family obligations, which it was generally assumed that disabled people could not perform.

Irv helped found the self-help and independent living movements, and yes, such movements were necessary. Back then people were secreted away in institutions, and if you couldn't climb stairs, or you were blind, or disfigured, or had cognitive limitations, you couldn't work. The movement Irv and others pioneered made a different claim: that society had an obligation to value all of its members and to include everyone as much as possible, and give everyone an opportunity to reach his or her potential.

Despite the law, this required activism, including in many cases civil disobedience. I worked my way through grad school doing consulting for community based organizations, including the Massachusetts Coalition of Citizens with Disabilities. In order to get the ADA enforced, they did wheelchair sit ins and blockades, to force businesses and yes, municipalities, to comply with the law. And they were cultural activists. The most difficult changes were not in the physical construction of public spaces, but in people's attitudes. Nowadays you expect to see people with disabilities in public, at work, in the grocery store, on the bus and subway. You expect those places to be accessible and you expect the people to be welcomed. In case you are too young to remember, 25 years ago, that was not the world we lived in.