Joseph Shapiro, writing on NPR’s ‘Shots’ health blog, salutes the legacy of disability advocate, scholar and historian Paul K. Longmore, who died Monday at the age of 64. Longmore was a professor of history and director of the Institute on Disability at San Francisco State University. He lived with complications of polio contracted when he was a child.

Longmore emerged on the national stage in 1988, when he burned a copy of his first book in an act of protest against federal regulations that keep many people with disabilities from working and deprive them of public benefits if their incomes exceed certain levels. (Longmore reasoned that he would lose some $20,000 in the yearly federal benefits that made it possible for him to work if his book, The Invention of George Washington, made just $10,000.)

The story of the protest is featured in Longmore’s book, Why I Burned My Book and Other Essays on Disability History. Social Security changed its rules on royalties in the wake of Longmore’s protest, Shapiro writes, but left in place other work disincentives which contribute to widespread unemployment among people with disabilities.

An excerpt:

Most of all, Longmore taught that people with disabilities, themselves, had changed the way the world defined what it means to have a disability. “Previously, disability was defined as a set of limitations in the abilities of people with disabilities to function in society because of some pathology in us,” Longmore said last month, at a San Francisco celebration of the 20th anniversary of the passage of the Americans with Disabilities Act. “The disability rights movement redefined disability as a problem mainly out there in society-not just in our bodies and minds but in society.”

It wasn’t the person with a disability who needed to overcome that disability, Longmore said. It was society that needed repair – whether it meant putting curb cuts at the end of the block, so someone like Longmore could get around in his power wheelchair, or changing Social Security laws so he could publish books and not lose the assistance that assured his accomplishment and independence.

See also:

• A tremendous loss — Not Dead Yet
• Federal employment data for people with disabilities

From the New York Times, Los Angeles Times, Berkshire [MA] Eagle:

Clara Claiborne Park, a college English instructor who wrote deeply personal and poetic books about her quest to understand her daughter’s autism, has died at the age of 86. She was regarded as an international leader in advocating on behalf of people with disabilities and in changing the prevailing wisdom about autism.

Published in 1968, Park’s first book, “The Siege,” chronicled the life of her young daughter, Jessica Park. At the time, autism was barely understood and professionals defined it as a symptom of family pathology or a “refrigerator mother.” Park’s second book about her daughter, “Exiting Nirvana”  in 2001, documented Jessica’s progress.

Jessica Park is now 51 and has worked in the mailroom of Williams College in Williamstown, MA, for 30 years. She is an accomplished artist. Clara Park was a lecturer in English studies at Williams from 1975 to 1994.

From the New York Times account:

["The Siege"] was credited with assuaging the guilt that so many parents of autistic children had assumed, and came to be regarded as an important source of insight for psychiatrists, psychologists, educators and advocates.

“She was one of the first parents who had the courage to share their story at a time when autism was poorly understood,” Dr. Fred R. Volkmar, director of the Yale University Child Study Center, said of Mrs. Park. “Since she first published her book, wider recognition of autism and early diagnosis have led to new treatments and improved outcomes.”

Bridget A. Taylor, co-founder and director of the Alpine Learning Group in Paramus, N.J., a school for autistic children, agreed. “The book really set the stage for families to search for answers; to no longer accept ‘no’ from the establishment, to have higher expectations for their children,” she said. “In many ways it decreased the isolation that families felt, and for many young professionals in the field, the book was an invaluable reading assignment to learn what the experience is like.”

As people with autism spectrum disorders take a more prominent place in society, Los Angeles Times reviewer Sonja Bolle finds a crop of books for kids and young adults that explore their world. These books can help, she says, by perhaps giving us all a better sense of the variety of human experience.

Among her selections:

• Al Capone Does My Shirts and Al Capone Shines My Shoes, by Gennifer Choldenko
• Mockingbird, by Kathryn Erskine
• Anything But Typical, by Nora Raleigh Baskin
• The London Eye Mystery, by Siobhan Dowd
• Marcelo in the Real World, by Francisco X. Stork

An excerpt:

All these novels are worth reading just because they have fascinating characters. Readers might like to enter their minds at least in fiction, and who knows? Perhaps they’d be inspired to take a new look at some of their classmates.

Chicago Sun-Times columnist Neil Steinberg says the word “retarded” may have started out as a clinical term, but it has been twisted into a taunt over the past half century and should be put to rest.

Were developmentally disabled people secure in the mainstream alongside the Irish and accountants, we could happily debate the cultural desirability of mocking them. But given that recognizing their full humanity is a fairly recent development, it seems that we should at least acknowledge that ridicule, though funny in entertainment, is destructive on a personal level.

…In 1953, Dale Evans, wife of cowboy star Roy Rogers, penned a book, Angel Unaware, about their daughter Robin, who was born with Down syndrome. Doctors told her to have Robin institutionalized. Instead Evans, inspired by her deep Christian faith, posed the little girl in family publicity photos. The book sold 400,000 copies in the mid-1950s, and parents who otherwise never let their children out of the house felt comfortable bringing them to Roy Rogers rodeos, because of his wife’s book.

They felt safe there.

I believe that any person with a heart, facing this complex issue, would rather err on the side of those children, would want them, not merely to get out of the house to see a cowboy show, but to also go to school with other kids and work at a job, if they could, still safe and accepted, without their lives being made a hell by would-be wits looking for someone to abuse.

Writing the New York Times ‘Diagnosis’ column,  Dr. Lisa Sanders ponders whether Sherlock Holmes might have had Asperger’s syndrome. The fictional private eye, to be featured in an upcoming film starring Robert Downey Jr., had many symptoms of the syndrome, she says, including an obsessive focus on narrow subjects, mood swings and an apparent inability to relate to others.

Sanders says author Arthur Conan Doyle, Holmes’ creator, trained as a physician and filled his stories with realistic medical description. Could he have based Holmes on patients he observed? “We may never know,” she says, “but clearly Holmes’s peculiarities have a persistent appeal.”

(Movie poster from imdb.com)

From USA Today:

Comedian Howie Mandel answers questions about his new book, “Here’s the Deal: Don’t Touch Me” , arriving in stores today. The book details his lifelong struggle with obsessive-compulsive disorder and attention-deficit hyperactivity disorder.

An excerpt:

Q: In your book, you say any public restroom freaks you out because of the germ factor. You write about not being able to take your daughter into one when she was a toddler. What are some of your other issues?

A: The difference between you and me is that even when I wash my hands, I can’t get it out of my mind that they’re not clean. I have to go back to the sink, I can’t even continue with my day. I have to leave the party, leave work. Those thoughts are so intrusive and on a continual loop that I can’t inhibit it. Everybody has irregular thoughts, but not like this.

Earlier post here.

(USA Today photo)

The [UK] Sunday Times carries an excerpt from Sarah Palin’s memoir in which she describes the “the problems and the joy of living with her special needs son.”

“Did I have enough love and compassion in me to do this? Don’t you have to be wired a little differently to be gifted with the ability to raise a special-needs child, a child who isn’t “perfect” in the eyes of society? I didn’t know if I should be ashamed of myself for even thinking these things.

“I read that almost 90% of Down’s syndrome babies are aborted – so wasn’t that a message that this is not only a less-than-ideal circumstance but also one that it is virtually impossible to deal with? Now, just a couple of hours into this new world, I could not get my arms or heart around it. That fleeting thought [abortion] descended on me again, not a consideration so much as a sudden understanding of why people would grasp at a quick ‘solution’, a way to make the ‘problem’ just go away. But again, I had to hold on to that seed of faith.”

(Photo from the [UK] Sunday Times)