Pushing Limits: Disability as an Unexpected Gift

Visitor — Fri, 01 Jul 2016 18:38:34 +0000

Bravo to the Oxford University Press blog for publishing the following feisty piece about Paul Longmore's Telethons book by director Catherine Kudlick:

http://blog.oup.com/2016/07/disability-telethons-charity/

This year, a San Francisco Bay Area radio station, KPFA, will offer a scholarly book as a gift in its July 2016 pledge drive. Sure, these pleas for listener contributions often give away books, along with the iconic tote bags and baseball caps. But this particular book is not the usual token of appreciation.

Ironically, Paul K. Longmore’s, Telethons: Spectacle, Disability, and the Business of Charity exposes the problematic history of fundraising and charitable giving. In fact, the book–and the gift– push us to look at the real damage that’s done when pathetic and tragic images of disabled people are used to raise money.

A film such as the recently-released “Me Before You” that celebrates a disabled man taking his life to unburden his non-disabled personal care assistant isn’t about someone’s choice to end his life; it’s actually an example of having too few choices for how to think about disability. We’ve been brainwashed by programs such as the pity-inducing telethons which, because of their monopoly for over a half-century, eclipsed other stories, other images, other possibilities for living as a person with a disability.

In their heyday, everyone knew of the telethons that dominated American television for a half century. Over the years, they slowly faded away from popular culture until the last one aired with barely a whimper in 2015.

A portmanteau of “television” and “marathon,” telethons first took root in the 1950s, primarily to raise money for disability-related charities. Initially, these over-the-top, cheesy variety shows were local and lasted just a few hours. But quickly they grew into a national phenomenon that sometimes ran nonstop for over 40 hours (remember, only a few channels and no Internet!).

Despite kitschy programming, telethons were serious (big) business for disability-related charities such as March of Dimes, American Arthritis Foundation, United Cerebral Palsy (UCP), Easter Seals, and Muscular Dystrophy Association (MDA). Among other things, they influenced how Americans thought about generosity, corporations, healthcare, and disability.

To be sure, thanks to the billions of dollars they raised, telethons genuinely helped some people. For example, they made it possible for someone to get a wheelchair when they couldn’t afford one, attend summer camp, and of course, helped fund medical research. And they put people with disabilities, long hidden away at home, in public in ways unprecedented in history. Indeed, thanks to the programs, many people with disabilities discovered other people like them for the first time.

But the good was far outweighed by the toll it took on disabled people. The organizations raised this badly needed money by playing on viewer’s emotions to show disability as horrific and creepy, as in this video where a man plays the part of a stalker. Meanwhile, people with disabilities were cast as helpless and pathetic victims of tragedy. Taking a page right out of Victorian sentimental literature (think Tiny Tim in Charles Dickens’ A Christmas Carol and other tales of woeful afflictions), children and their families made desperate pleas to viewers. Or they were heroic, brave overcomers who did everything they could to prove they weren’t really disabled. Whether victims or heroes, people with disabilities had no voice other than to reinforce messages of the able-bodied hosts and celebrities who depended upon disabled people to be victims of tragedy.

Since viewers never got to meet disabled people who thrived and actually lived full lives, it seemed perfectly okay to help fund medical research that would eliminate them, all of them. Equally problematic was the unrealistic goal of curing all disability, and the reality that people with disabilities would always be part of even the most modern societies. Put another way, the programs left little room for disabled people who would go on living, often even happy with their lives.

Indeed, watching the programs you’d wonder if many disabled people ever grew up. This was because disabled children proved effective fundraising tools, to the point that they became part of the entertainment as they struggled to walk across the stage to much applause. Years later, some recalled their crutches being taken away so that their struggles appeared even harder to the spell-bound audiences. Many remembered hosts smiling down on them as they heard parents and others exclaim how hard they made life for everyone.

The issue of course isn’t that people need help that generous souls can and do provide—it’s more how that help is awakened, what images media trot out to reinforce existing prejudices against disabled people. Without positive examples of individuals thriving and shaping their world, little wonder that the protagonist in “Me Before You” would decide to end his life and that viewers would applaud this as death with dignity. But change is in the air. Even if mainstream media continues to promote films like “Me Before You”, social media offers more options. Campaigns such as “This is What Disability Looks Like” on Facebook and #SayTheWord on twitter promote complex, interesting, unexpected views of disabled people from a disability perspective. Meanwhile, university programs and courses and grassroots film festivals question how people with disabilities have been and can be represented. There are also calls for seeing disabled people as a political constituency as well as Crip the Vote.

The pledge gift of a book about telethons from KPFA offers an example of this new thinking pushing through and pushing back. What sweet irony to learn a book that exposes how people with disabilities are exploited for fundraising will help keep “Pushing Limits,” a radio show run by and for people with disabilities, on the air. In this knowing wink among fighters for social justice there’s something much bigger: it’s a fiendishly subversive protest not with bullhorns and signs, but with lifted finger at a whole system that sacrificed dignity in the name of charity.

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Gazing into The Eye of Power

Visitor — Thu, 03 Dec 2015 20:54:23 +0000

By Michael Williams

Michael Williams poses in front of his photo from 1977 at the Patient No More exhibit.

I have been a frequent visitor to the Longmore Institute's Patient No More Exhibit, which opened in July at the Ed Roberts Campus in Berkeley. Every time I go, I marvel how well the exhibit tells the story of how the first piece of Federal disability rights legislation came about.

I played a small part in these events. With my KPFA radio press pass, I was able to move freely in and out of the sit-in at the San Francisco Federal Building while other protestors could not re-enter if they left the building. After weeks without any federal response, a contingent of San Francisco protestors, including myself, traveled to Washington, DC, to directly confront President Carter, Congress, and Health Education and Welfare Secretary Califano and demonstrate on a national stage. My strongest memory of the San Francisco 504 protest in Washington, DC is John King and me crashing Joe Califano's luncheon speech at the National Press Club.

Here's what happened when I got in to Secretary Joseph A. Califano's address at the National Press Club luncheon on April 27th, 1977. (Remember, I had a KPFA radio press pass.) I don't remember the hotel it was in, or the subject of JC's blathering; all I remember is John King, me, Evan White, and KGO cameraman Ray Weiss entering this fancy hotel, taking the elevator to the lower ballroom where we found ourselves surrounded by a sea of guys in suits wielding walkie talkies. I had a slight moment of panic when I thought, Well, if I didn't have an FBI record before, I certainly do now. John and I checked in at the press table, and to my amazement they let us enter the ballroom with no questions asked.

There didn't seem to be any protocol as to where people could sit, so John and I grabbed two seats at a front table right under the dais. We ate the cliché chicken luncheon meal; it tasted just as cliché luncheons found in novels do. The meal ended and Califano began his talk. As I said, I don't remember what he was talking about, but I do remember staring daggers at him all the way through his talk. When the talk was over and the floor was opened for Q&A, John King asked a question that to this day I don't understand the meaning of. He asked why the security level had been raised to yellow. "Is that because of the protests?" I was baffled; Califano was puzzled. Califano said he didn't know of any yellow alert, but the protesters should be pleased in a few days. The luncheon ended shortly after that, and everybody headed for the elevators, included Evan, who got in real trouble for shoving his way onto Califano's elevator. Meanwhile, when I got outside, I wasn't watching where I was going and careened off the sidewalk curb onto the hotel driveway, all of which Ray Weiss caught on KGO's videotape.

That was the end of my association with Joseph A. Califano until the evening of April 15th, 2004, where the Secretary, accompanied by his wife, was appearing in Berkeley at Cody's Books, to plug his memoir, Inside: A Public and Private Life. I was among the scattered few in the audience. As I was listening to his remarks, I wondered if he would mention anything about 504. Well, indeed he did—including that bit about the feared headline, "Dog Bites Cripple."

While he was talking, I was furiously typing something into my speech generating device that I wanted to utter during the Q&A. Califano fielded several queries before I worked up the courage to raise my hand and say this:

"Hello mister secretary, my name is Michael Williams. You and I share a tiny piece of history together. I was one of the people who occupied the federal building in San Francisco during the five oh four demonstrations of the mid-nineteen seventies. I want you to know that the five oh four regs completely changed my life and took me on a path I never thought I could travel. I look forward to reading your book. "*

To my utter embarrassment, my remarks were greeted with vigorous applause by the assembled few. I glanced over to Mrs. Califano. She was staring daggers at me.

The Secretary inscribed my copy of his book thusly:

"For Michael—Who gave us the energy to put out the 504 regulations—Joe Califano"

While he was signing my book, I stole a glance at Mrs. C: She was still staring daggers at me.

*This quote is typed and punctuated exactly as input into my speech generating device for my intended pronunciation.

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