Tuesday, September 16, 2008

Paul Longmore: An open letter to the disability rights constituency

Via Patricia E Bauer:

Guest commentary:
What Kind of Advocacy Do Americans with Disabilities Really Need?
By Paul K. Longmore

Ever since Sarah Palin’s acceptance speech, the “needs” of children with disabilities have gotten a lot of press. Palin pledged to be a “friend and advocate” for those children. News stories have reported the excitement of parents and other people in the disability rights constituency that disability issues are finally getting some attention. Some of them have decided to support the election of Palin and John McCain. But do the Republican candidates offer the kind of advocacy Americans with disabilities really need? I don’t believe they do, and I want to explain why I am voting for Barack Obama and Joe Biden instead.

Before that, I should probably explain a bit about myself. I know what it is like to grow up as a child with a significant disability. And I’ve certainly known how hard it can be as an adult. I had polio as a boy. I’ve used a ventilator for many decades now and driven a power wheelchair for the last seven years. I have no use of my arms. I employ personal assistants to do housekeeping and aid me with basic personal needs. I struggled for years with oppressive bureaucracies and unfair public policies such as work disincentives.

I recounted those battles in Why I Burned My Book and Other Essays on Disability (2003). Because of the disability rights movement and despite most government policies, I finally achieved my main goal and became a professor of American history at San Francisco State University. Because of what I’ve had to deal with, I also became a disability rights activist and a disability studies scholar.

Looking back, I can see how difficult it all was for my parents and what little support they got. It is understandable that parents of children with disabilities would clutch at Sarah Palin’s promise to be an “advocate.” Many ofthem are increasingly desperate. Last month a University of North Carolina at Chapel Hill study documented the “chilling” rates of “hardship” among middle class as well as poor families with disabled children. They “are struggling to keep food on the table, a roof over their heads, and to pay for needed health and dental care.” (1) Large numbers of adults with disabilities face the same economic hardships.

We’ve made a lot of progress in disability rights, but in some ways it’s even harder financially for people with disabilities and their families than it was when I was a child, a youth, and a young adult. From both my personal experience and professional work, I understand what it’s like for a lot of us. And I think I have some grasp on what sort of advocacy we need.

Would Palin provide that kind of advocacy? Would a President John McCain support the needs, interests, and rights of Americans with disabilities? What about Barack Obama and Joe Biden?

In their convention speeches, Palin, John, and even Cindy McCain focused only on children. The media have talked almost exclusively about children too. What so many people seem to forget is that children with disabilities grow up to become adults. Ninety percent of the 54 million Americans with disabilities are adults. Most acquired their disabilities after childhood.

In addition, the media talk has mostly been about “compassion” not about “issues.” There has been little discussion about issues that matter to people with disabilities of all ages, issues such as health insurance, community-based personal assistance services, education, employment, and civil rights. Research has repeatedly found that voters in the disability constituency — adults with disabilities, parents, and many professionals — decide how they will vote based on candidates’ positions on disability issues. But they are often frustrated in trying to get that information.

In what follows, I summarize and critically examine the information I have gathered about the candidates’ stands. I have gleaned it from online and printed sources as well as contacting some of the leading experts in the various communities that compose the disability rights constituency. Some of the information out there in the blogosphere is wrong. I’ve tried to get accurate and reliable information instead. Sometimes those experts I mentioned set me straight about things I had thought were true that they said were incorrect. It strikes me as significant that as far as I can tell the vast majority of those experts and other disability rights leaders are supporting the Obama-Biden ticket.

The full text of Professor Longmore's commentary is here ...

Paul K. Longmore is a professor of history and director, Institute on Disability, at San Francisco State University.