Why We Protest

Watch the news report (via YouTube) from "The Trouble with Jerry" protest at the offices of Academy of Motion Picture Arts and Sciences by disability activists who believe the recent Hersholt Humanitarian Award to Lewis validates the legendary comedian's out-dated attitude toward people with disabilities. The protesters are articulate and thoughtful.

And then read some of the comments, and you'll see why it is sometimes difficult to have a rational discussion about the place of disability in society.

Judging by Appearances

From Charles M. Blow's column "Nation of Cowards?" in today's New York Times. I've always believed that a significant element within the dynamic of prejudice against people with disabilities is because many of us are identifiable by sight.

Project Implicit, a virtual laboratory maintained by Harvard, the University of Washington and the University of Virginia, has administered hundreds of thousands of online tests designed to detect hidden racial biases. In tests taken from 2000 to 2006, they found that three-quarters of whites have an implicit pro-white/anti-black bias. (Blacks showed racial biases, too, but unlike whites, they split about evenly between pro-black and pro-white. And, blacks were the most likely of all races to exhibit no bias at all.) In addition, a 2006 study by Harvard researchers published in the journal Psychological Science used these tests to show how this implicit bias is present in white children as young as 6 years old, and how it stays constant into adulthood.

Disability Advocates Protest “Humanitarian” Award Recipient

The news release below is now circulating. As a frame of reference, I heard a Hollywood reporter say yesterday that there is some significant opposition in the film community to Lewis being awarded. The opposition arises from his attitude toward people of homosexual orientation. The irony might be amplified, at least as far as the disability community is concerned, if (as reported) Lewis appears using a wheelchair.

... from a news release.

Los Angeles, Ca. - Disability community leaders from across disability advocacy will protest the decision of the Academy of Motion Picture Arts and Sciences to grant Jerry Lewis the Jean Hersholt Humanitarian Award at this Sunday's Oscar Awards ceremony. Lewis has described disabled individual is “half a person” and referred to a wheelchair as "a steel imprisonment."

For more than two decades, disability rights advocates have objected to Lewis' portrayal of life with a disability as tragic and pathetic. In response, Lewis snarled, “You don’t want to be pitied because you’re a cripple in a wheelchair? Stay in your house!”

Dismissing the disability community's objections, the Academy has decided to proceed with the award. In a letter to the activist group The Trouble with Jerry, Academy director Bruce Davis compared Lewis’ insulting, outdated attitudes to "some scratches in the paint job... of a Lamborghini."


"To outsiders, Jerry Lewis may be perceived as a humanitarian, but to us Lewis personifies one of the biggest barriers facing people with disabilities: outdated attitudes," said author and activist Laura Hershey, a protest organizer. "While the Motion Picture Academy has chosen to award Lewis the Hersholt award due to the money he has raised on his MDA Telethons, we counter “The cost is too high. Money can’t buy respect,” said Hershey.

Over 30 organizations endorse The Trouble with Jerry campaign, and to date over 2600 individuals have signed a petition protesting the award.

Demonstrations will take place during Oscar weekend in Los Angeles and around the US. Local LA protest schedules and locations are as follows:

• Friday, February 20, 12 noon, Motion Picture Academy, 8949 Wilshire Boulevard, Beverly Hills.
• Saturday, February 21, 12 noon, Kodak Theatre, Highland & Hollywood Blvd.
• Sunday, February 22, 2:00 p.m., near the Kodak Theatre, Hollywood & Vine

Correspondence between The Trouble with Jerry and the Motion Picture Academy, as well as some history of disability rights protests against Jerry Lewis, and current protest information, can be found at the protest group's website.

Not Cool but Convenient

The new power chair, Ol' Number 8, fits on the lift that elevates me into our Ford van -- at least now after 2 inches have been trimmed off the foot rests.

The beast is heavier also, which lead to the discovery that the lift wouldn't lift it -- a problem that was solved when the artist restoring my wife's 1959 Ranchero discovered there was a specific pressure setting for the hydraulics. Adjust pressure. No. 8 is carried upward 40-inches or so.

This on a lift I've owned for 15 years and which should have been regularly filled with diesel fuel (hydraulic fluid) during the winter. I should've read the manual front to back, in that all that has been done in maintenance is re-filling the reservoir with No. 5 automatic transmission fluid, as specified.

Back to the chair -- which has no pockets. I need pockets. I carry a pair of pliers, a screwdriver, and a 5-inch folding knife. In fact, Ol' Number 8 has only single pillar supporting the armrests, and thus gives every appearance of being built so that the pilot might hang a plastic shopping bag from it.

Which brings me to the point: I stumbled across a Google ad that keyed on the ugly words "wheelchair bound," but when I went to the site to protest, I could not find the term. It apparently was a keyword inserted by a web-guru intent on covering every base. Sellers rarely insult customers.


But I found this gadget -- this hanging basket, among the products listed to offer wheelchair users means of carrying necessaries. It's interesting that the price for this little drapery in the form of a hanging pocket is entirely reasonable. I have found otherwise -- reacher sticks in medical supply stores cost three times those found in discount stores. That's why my present backpack (which is unreachable for me to store my necessaries in and instead is used by my family as a convenient tote) is a Wally Word special that cost fifteen bucks.

As noted, until I strike the lottery, I prefer convenient over cool.

Stem Cells, a Cure, and a Choice Too Late

Obama keeping stem-cell advocates waiting
By Marie McCullough
Inquirer Staff Writer

Within days of taking office, President Obama was expected to sign an executive order to remove Bush-era federal funding limits on embryonic-stem-cell research.

Now that days are turning into weeks, proponents of the research are looking for explanations while insisting that Obama's support has not wavered.

Rep. Mike Castle (R., Del.), a congressional champion of the research, said that last week, he explicitly asked White House officials about it.

"I believe there will be an executive order lifting the funding ban," Castle said. "My speculation is that it will happen in a few weeks. . . . They've had a lot of things to deal with. I see no bump in the road."

Read the remainder of the story in the Philadelphia Inquirer here.

"Do you think you might try such a treatment someday in the future?" a friend asked me.

Would I try stem cell therapy? I don't know. I think Christopher Reeve was in some of that advance research stuff for spinal cord injury, and he surely didn't look well in his last days.

There's a major contrarian element amongst disability activists about research. It is not so much opposition as it is frustration over every politician and charity being hot to trot over handing out the bucks for "cure research" while ignoring the idea that access and accommodation are grossly underfunded. The frosting on that cake is that it becomes easier to ignore access and accommodation by pointing to all the funds being spent on cure.

Cure is sexy -- "Rise up and walk!" -- but accessible bathrooms are prosaic.

I'm not one of the sorts who claim "Disability is beautiful. I don't want to be cured." I think disability as a condition is normal by application and different by degree.

All the same, I don't know what stem cells would do for me as a polio-injured person. If it would restore vital capacity to a normal range, I would probably sign up today. If I lived near a research hospital where I might participate in an experiment with stem cells, I might sign up simply to do something positive for science.

Of course, I am dealing with A Thing that Happened, while people who have MS or similar conditions are dealing with A Thing Happening. People with MS, I think, would be more likely to benefit from stem cell therapy.

So there you are: a definite "Maybe, but it really kinda sorta depends" ... answer.

In some way, I suppose, I don't think about it much because after 50 years it seems fantastical thing that I might walk again. I prefer to live somewhere near the edge of reality, a place where I can concentrate upon the joys within reach.

"I'm Not Sick! I'm a Crip!"

I don't know how many times I've wanted to yell that, a choice not taken only because I was schooled in good manners by parents of southern heritage.

The most recent time came when I sent off an essay to a major metropolitan newspaper that features pieces about people's "Lives."

Ah, a market, I thought. A place to fly the crip flag and remind folks we're all in the same boat.

The response?

... this is nice but not really the right form for Lives. We really do stories or chronicles of something that happened, as opposed to essays. We also have a diagnosis column that runs every month in the magazine (written by a doctor) and the paper has the weekly health section, so we've been doing less health-related stuff than we used to do, and it makes it that much tougher to get on the page.

I do not mind the rejection. The piece I wrote was in fact an essay about "what is" rather than about "something that happened," but I am again bemused that disability is almost automatically interpreted as a "health issue."

Of course, the idea may be so deeply ingrained in societal perceptions of "normalcy" that it will never change. I do know I've been writing about life in a wheelchair for more than ten years, and I can see little progress.

Jerry Lewis and Half a Reward

Jerry Lewis, the slapstick half of Martin and Lewis and the driving force behind the Labor Day MDA Telethon, is not a popular figure among disability activists. The reasons are complex, but in my opinion, valid. And deep -- deep enough in fact for a petition to be " ... launched to object to the Academy of Motion Picture Arts and Sciences' announcement that it will give Jerry Lewis its Jean Hersholt Humanitarian Award at the Oscar Awards ceremony on February 22, 2009."

The odd thing is that this opposition is often greeted with derision by other people with disabilities.

Read the reason -- and notes from the opposition -- here on Josie Byzek's "Tremors of Intent" blog at New Mobility Magazine.

Guesting on Victoria's Blog

... on the blog of my writing friend Victoria Mixon.

I am very much a believer in the idea that writing both creates and destroys, a whimsically ironic perception I contrived long ago after I read "We Are Norsemen," a short story by the novelist T. Coraghessan Boyle.

Boyle's narrator is a skald, a Viking poet, and the story chronicles a raid on the Irish coast. At the end of the raid, the skald destroys an illuminated manuscript in the presence of its monk-creator, an irony of the first order since the skald fancies himself an artiste, an intellectual among brutes.

What does writing create, and destroy? For me as an essayist and an author of a memoir, I think I create and destroy truth and illusion. Of course, it is sometimes painful to pull the rug out from under someone's perceptions. A few reader of my memoir believe I fester with toxic anger. I don't, if you're interested. But I don't care to disguise whatever anger lives in me. The anger is true. But at the moment not toxic.

That sort of writing doesn't come easy. For one thing, the rug came out from under some of my own perceptions, For another, there's an element of narcissism that's less than appealing – too much thinking about who I am and what I want to write, about organizing the raw material, about writing it down, and about discovering what it is.

And narcissists lie.

And this leads me back to another writer who apparently influenced me before I knew I wanted to write: the black humorist Peter DeVries. Each time I feel as if the world has failed me – "How dare it!" – I remember a line from one of DeVries' novels. "Human nature is pretty shabby stuff, as you may know from introspection."

I don't except myself. We are, every soul alive, flawed creatures, and I suppose I am saved from disgrace only because I am thoroughly willing to dirty up my own self-image in trying to confront and explain what I know about the world. I'm even willing to appear "shabby" simply to confront the anxieties and insecurities of being alive, being mortal.

Here's a thing you may learn while attempting to tell the truth: it is a fearsome thing, this living, being human on this lost outpost of Infinity, and sometimes it is enough to cramp our guts with a visceral fear so dark that we might rip apart an illuminated manuscript in terror.

My memoir – Seven Wheelchairs: A Life beyond Polio – was in fact an act of creation, an act of affirmation. What I didn't know when I set out to tell my little story is that I would be required to abrade myself down to the point where elementary emotional qualities reign, to burn away illusions and then dig through the emotional ashes to find some sort of truth that you, the reader, did not know.

Of course, there is irony piled upon irony, for as the poet-prophet who penned Ecclesiastes wrote in his first chapter, "What has been, that will be; what has been done, that will be done. Nothing is new under the sun."

But like DeVries, I tend to prefer the sardonic, and so I will pair Ecclesiastes with that lost soul Ambrose Beirce, who surely read the prophets thoroughly enough to agree, and then take it one step further as a writer should, "There is nothing new under the sun but there are lots of old things we don't know."

All that's fine, and I agree. I told no truth that had not been told before. In fact, I could be persuaded there is but One Story, a Truth which is made up of an infinite number of multiple stories. But I destroyed an illuminated manuscript in the process, one decorated with all the figments of my imagined reality.

In fact, I might offer the opinion that unsparing observation, both introspective and external, is the obligation of fiction authors as well, even if a good measure of the human psyche exist in mystery – in illusion – beyond the reach of art.

WBTV Talks about Wheelchair Etiquette

Including the stinky word "bound ..."

The first rule of etiquette when interacting with people in wheelchairs, or power chairs, is to remember that one should not focus on their disability. Instead, focus on the person. Another rule of etiquette is the act of shaking hands, even if their limbs are limited in use. This gesture will set the tone for the interaction and make the person residing in the chair feel more at ease. Another important rule to remember is that one should never lean on or rock the wheelchair. A manual or electric wheelchair may seem to be only an inanimate object, but the truth is the chair is part of them and their body, just as an arm or leg is to someone who is not wheelchair bound.

And so I was bound to reply ...

Please drop "wheelchair bound" as a description of a person who uses a wheelchair. Even after 50 years of using a wheelchair, I cannot shake the image of duct tape, unlawful restraint, and someone wanting to escape. No one is "bound" to a wheelchair.

Nice piece overall, but here are a few more hints.

1. Don't touch the chair. Don't use it as a foot rest in a movie theater or other public place.
2. Don't pat the wheelchair user on the head or shoulders.
3. Don't tell the person he or she is a "hero" or "brave."
4. Don't suggest more fervent prayers might cure their disability.
5. Don't ask "What's wrong with you?"
6. Don't be afraid to allow your children to interact, even to the point of asking a question you might think inappropriate.
7. Keep toddlers who like to 'look with their hands' away from a power wheelchairs control unit. Little hands might grab and the chair might lurch and hurt someone.