Of Harrison Ford, Brendan Fraser & Jerry Lewis

http://extraordinarymeasuresthemovie.com/

The new movie "Extraordinary Measures" has my mind running in circles.

No, this column is not a film review. Sorry.

I'm not actually writing about the movie itself, but what it calls to mind for me.

As engrossing as the Harrison Ford and Brendan Fraser flick may be, let's face it. It's at least partly about a medical breakthrough … about how even life-saving treatments are sometimes only possible with mega-funding. Especially for rare conditions, where the payoff of success--the profit potential--is dubious.

Sad but true.

Yet what's bugging me is the way this message echoes the Muscular Dystrophy Association's mantra. You know, "Send money or these kids will die!" Or words to that effect.

I've never liked that message, the implied threat. I feel it exploits kids with disabilities, turns them into one-dimensional objects of pity.

Well, guess what? MDA IS claiming a role in the true story on which "Extraordinary Measures" is based.

The true story involves the development of Myozyme, the only FDA-approved treatment for the rare, progressive neuromuscular condition called Pompe. Which affects one in 40,000 people, according to www.pompe.com--depleting their muscles until they become too weak to live. Myozyme isn't a cure, but it can slow Pompe enough to save lives.

It turns out MDA really was one of the behind-the-scenes funders of this life-saving intervention. I double-checked.

"Many organizations and individuals who worked over many decades on Pompe disease should take credit for Myozyme," Lori Gorski, associate director of corporate communications at Genzyme Corp., the Cambridge, Mass.-based pharmaceuticals concern that developed Myozyme, told me by e-mail. "The MDA helped support patients who took part in clinical trials of Myozyme and also sponsored early research in Pompe disease."

OK, but the irksome thing for me is this: For decades, one consistent primary theme of the disability-rights movement has been that we're fine as we are. We don't need fixing. We need acceptance, accessibility, respect, integration, education, employment ... NOT a mad search for medical miracles.

Of course, there's nothing wrong with medical interventions that extend or sustain or improve our lives. In fact, I have personally benefited from numerous scientific advances. Who hasn't?

And to be fair, some people DO want to be cured of their disabilities. Especially those in chronic pain or facing imminent death. Prominent disabled folks like Michael J. Fox and the late Christopher Reeve even lend their names to foundations devoted to finding cures.

But I can't help feeling that focusing one's energies on medical remedies for what are truly societal problems is, at best, a distraction--a misdirection. If you're fighting a disease, you're not advocating for disability rights.

Courtesy www.ADAPT.org

Am I unfair? Oversimplify-ing? Surely, it's possible to believe in disability rights AND support medical break-throughs at the same time. Yet I just don't know how a person with a disability can get on with his or her life if he or she is obsessed with finding a cure. Maybe it's me. But isn't the medical message intrinsically saying, You're not good enough as you are? It's not okay to have a disability?

(I think of the African-Americans who used to employ poisonous chemicals to try to straighten their hair and bleach their skin. Malcolm X himself did this, before learning it's the wrong way to rectify the problems of racial injustice.)

I've finally come to partial closure on this. It came to me when I was watching TV and there was a commercial for a new Alzheimer's drug.

What came to me was: there are so many disabling conditions! So many worthy targets for pharmaceutical research. How is one to choose which is most worthy of scarce R&D dollars?

It's great that these treatments exist, and more are on the way. But we're never going to solve all the medical problems. There will always be some people with disabilities. Polio is all but cured, for instance, but you can't stop people from breaking their legs while skiing, or contracting multiple sclerosis, or getting age-related infirmities.

The disability-rights movement seeks to make the world better for all people with any type of disability. Our mission is therefore broader than any clinical lab's can ever be.

After all, what happens to those facing chronic pain or imminent death while they're waiting for a cure? Or those who aren't interested in one.

What's more, a more tolerant, accessible and inclusive society benefits everyone.

Enough! I welcome reactions from readers.

Who's is the most unemployed?

Before USA Today published my op-ed, a fact checker questioned my assertion that the unemployment rate for people with disabilities exceeds that of African-Americans.

Not that she doubted it to be true. She simply needed a source. I LOVE fact checkers; some may say they're a nuisance, but I for one feel better when my writing is thoroughly vetted for accuracy before it goes out to the public.  I gave her more than she bargained for.

First, I conceded, it is true that the Bureau of Labor Statistics found that unemployment among employment-age Americans with disabilities was 13.8%. But the same body also reported that African-Americans had an unemployment rate of 10.1%--until the economy worsened. Then unemployment for African-Americans rose to 13.4%, as of February 2009, as measured by the U.S. Department of Labor and reported in many places such as Los Angeles Times, March 21, 2009: "The overall unemployment rate for blacks in February climbed to 13.4%..."

There is no such recent government measure for people with disabilities. 

What's more, experts point out that the government statistics reflect only those who are still actively seeking employment, leaving out the many folks who have given up. 

The difference can be staggering, as several academic estimates demonstrate.

Among them:

Annual Disability Statistics Compendium 2009, from Hunter College's Rehabilitation Research and Training Center on Disability Statistics and Demographics:

     "In 2008, of the 18,995,085 individuals with disabilities ages 18 to 64 years living in the community, 7,418,740 individuals were employed—an employment rate of 39.1 percent. In contrast, of the 168,584,148 individuals without disabilities ages 18 to 64 years living in the community, 130,970,538 individuals were employed—an employment rate of 77.7 percent... —an employment gap of 38.6 percentage points."

The most recent U.S. Census Bureau release has similar results.

U.S. Census Bureau: "Americans with Disabilities 2005," issued December 2008:

  "Of the population aged 21 to 64, 28.1 million people (16.5 percent) had a disability, and 45.6 percent of this group was employed ... [compared with] 83.5 percent for people with no disability."

Another, somewhat older, source --
Cornell’s second Annual Disability Status Report, October 4, 2006:

     "Only 38 percent of nearly 21.5 million people with disabilities between the ages of 21-64, or what is determined as ‘working-age,’ were employed last year. That figure compares to just over 78 percent of people without disabilities.

     "... The report also found that in 2005, people with disabilities made an average of $6,000 less for full-time work than those without disabilities.

     "Similarly, median household income was $35,000, about $26,500 less than people without disabilities. People with disabilities were two–and-a-half times as likely to live in poverty than those without."

Perhaps it's simpler to ask the experts, I thought. So I tried to get a relevant quote from an actual person knowledgeable in the area. I got two good ones.
Andrew J. Imparato is president and CEO of the American Association of People with Disabilities, in Washington, DC. Andy confirmed: "Even with the narrow definition of 'unemployment,' the rates for the disability community are higher than the rates for African Americans."

The other was Prof. Paul Longmore of San Francisco State University, who basically said the same thing.

In the end, because of space limitations, we agreed on the simpler though rather unsatisfying word "rivals." I now fear it may have sounded like disability unemployment is slowly catching up, which of course is not so. The reason I accepted the rephrasing--actually, I proposed it--was that I was thinking, when it comes to bragging rights for which minority group has the highest employment rate, most people think it's black Americans but in fact people with disabilities give them a run for their money, so to speak. We're rivals for the title of most unemployed.

OK, that's more than anybody needed to hear on this subject. Apologies. (Those of us who are underemployed clearly have too much time on our hands!)

MLK & People Like Me

Here's my original, long version of the Martin Luther King Day op-ed that appears in today's USA Today.  This is almost as originally submitted (I added one small detail):

How often am I stared at in public, even in this enlightened age? Showered with prescriptions for healing myself or, worse, prayed over? As if there were something wrong with me.

On the other hand, how many times have people told me, "When I talk to you I forget about your disability. You don't seem like a disabled person."

Which I take as a compliment, though what exactly a disabled person is supposed to seem like I don't even want to think about.

Still, both situations beg the question, What are people's assumptions about someone like me?

It's a question I imagine Martin Luther King must have pondered, too. I'll bet there were some whites way back at the beginning who were surprised he didn't talk like Rochester! And that's one of the reasons I believe we disabled owe a profound, personal debt to the civil-rights leader, second only to that of African-Americans. (And if you're black and disabled, you're doubly indebted.) Both groups are familiar with being under-valued.

I was born with a neuromuscular conundrum called spinal muscular atrophy. I never walked, stood, or had much use of my hands. When I lived past the age of two it was declared a miracle. Later, when I graduated from Harvard, got married, fathered two daughters, and began publishing articles, I was judged heroic, inspirational!

I was only living my life, doing the best I could, yet my accomplishments defied expectations.

King knew all about defying expectations. He proved that to move out from the shadows into the mainstream of society, sometimes you have to defy expectations.

To be sure, King wasn't thinking about the disabled per se, but he was prophetic in defining what's become a central theme of the disability-rights movement. Specifically: unfair treatment and prejudice do far more to hold us back than our actual physical conditions.

The concept permeated his speeches—perhaps never more clearly than in the preamble to his famous "I Have A Dream" oration. His people, he said, had been "sadly crippled by the manacles of segregation and the chains of discrimination."

Indeed, those of us who nowadays only use the word "cripple" as a sort of rebellious slang have suffered more from segregation and discrimination—evident in the architectural, attitudinal, financial and legal obstacles that are still only starting to crumble—than from our disabilities. This is an important point for two reasons. First, it tells us where to focus efforts to effect fixes—i.e., on access barriers, not physiological conformity. Second, it gives people with disabilities permission to feel okay about themselves just as they are, perhaps even engendering a little disability pride.

Believe me, it's hard to build self-esteem, let alone achieve parity, when you're made to feel inadequate for biological traits beyond your control. King's message teaches us how to stop feeling ashamed of our differences.

Make no mistake: there is a legacy of shame. Just as African-Americans were shunted to the margins of society, not so long ago we disabled were housed in attics, basements and institutions. Handicapped kids were sent to segregated special-ed schools, and many just stayed home. Why do polite wheelchair-users in old movies always cover their legs? Why did all blind people used to don dark glasses to conceal their unseeing eyes? Granted, some of that was for practical reasons--cold laps and light-sensitive eyes. But all of it, all the time?  You longer see these things as you used to. Have they simply gone out of fashion? Have we forgotten that, until the early 1970s, U.S. cities as progressive as Chicago actually barred visibly disabled people from appearing in public, under what were known as the Ugly Laws?

What's more, both blacks and the disabled were once considered genetically inferior. (Some people with disabilities still are.) There were laws curtailing our reproductive freedom, ostensibly to protect the gene pool, and many disabled people were forcibly sterilized.

Even today, people with disabilities—the nation's largest minority group—suffer higher unemployment rates than African-Americans.

The historical and current similarities are stirring. Which is why Martin Luther King Day should have special meaning for people with disabilities. Besides showing us how to organize and agitate for equal rights, King gave voice to the simple yet revolutionary notion that we're good enough—valuable, even—as we are. And as such we deserve better.

The more we celebrate that message—internalize it and get it across to others—the better off we'll all be.

(From http://www.martinlutherking.org/)
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Pondering Pendergrass' Passing

(http://teddypendergrass.com/)

Is anybody else bothered by the coverage of the death of the late, great Teddy Pendergrass?

Here's part of the New York Times' obit:

  "Pendergrass, who was born in Philadelphia in 1950, suffered a spinal cord injury in a 1982 car accident that left him paralyzed from the waist down -- still able to sing but without his signature power. The image of the strong, virile lover was replaced with one that drew sympathy.

     "But instead of becoming bitter or depressed, Pendergrass created a new identity -- that as a role model, [friend and longtime collaborator Kenny] Gamble said.

     "''He never showed me that he was angry at all about his accident,'' Gamble said in a telephone interview with The Associated Press. ''In fact, he was very courageous.'"

Sympathy? Courageous? Didn't become bitter or depressed? It may all be true, but I for one want to call out the cliché police! (Better idea: the stereotype police!)

Why are able-bodied people always so surprised, amazed and inspired when people with disabilities don't crumble, don't weep themselves to death? Why is every counter-example, every instance of people with disabilities actually coping and not feeling sorry for themselves (at least not publicly), seen as heroic and inspirational? As an example of individual pluck--instead of, you know, the real reality of disability. If so many of us are doing it, it can't be that exceptional.

     "[Gamble said,] 'I feel that he's in a better place now. ... He doesn't have to go through that pain or whatever he was going through anymore.'''

A better place than finishing the movie he was starting (to act or sing in, not watch)? Than continuing to record and perform? Not to mention his charitable work for others with spinal cord injuries, primarily through the Teddy Pendergrass Alliance he founded.

I'm glad you made yourself and some fans feel better, Mr. Gamble, but isn't that an insult to his memory?

For how I feel about the idea that people with disabilities are better off dead because in Heaven they won't have to deal with their "pain or whatever," see my NPR piece, "Are There No Wheelchairs in Heaven?" at http://home.earthlink.net/~bmattlin/id50.html

More and better things tomorrow, gentle readers. For this blog, I mean. Sheesh!

And rest in peace, Teddy.

(PS -- For an excellent disability-eye view of Pendergrass, see the excellent New Mobility magazine cover story from eight years ago, "Teddy Bear Returns," by Tim Gilmer.)

RAMPING UP, so to speak...

My agent said to improve my platform.

It seems the publishers who expressed the most interest in publishing my book held off for one primary reason: I'm not well known. How can I reassure them my book will stand out in the already crowded shelf of memoirs?

For me, this was a new use of the word "platform." As in a platform from which to launch book sales, I guess. If not fame, then a public-speaking circuit or organization that would guarantee a certain number of bucks' coming in.

So rather than going through yet another rewrite to tantalize publishers, my mission became to boost interest in me, who I am, what my story is, and what I've got to say.

The best way for someone like me to do this is to write. And write, and write. I could pretend one of my kids had gone up in a balloon, but that'd send the wrong message. Right?

The Internet makes self-promotion easy and inexpensive. I already had a Web site to serve as a sort of portfolio of published work. The idea being, when I approach magazines with story ideas I don't have to enclose photocopies of clips and tear sheets, as in the old days. I can pitch ideas by e-mail, with a link to my site, which in turn is linked to my writing samples.

I already had a Facebook account, for no better reason than everybody does.

I had thought for some time about blogging but couldn't see the point. If my writing is going to go out to the public, I want it to be for pay. After all, I'm a pro.

Nevertheless, I did have some columns that never sold and probably never would. So I put them on a blog. As I kept writing columns and sending them out, I amassed even more blog material.  Sure, some got published, but the rest got blogged. Gradually, I thought of more and more things that seemed blog appropriate. Nothing worth polishing for print or pitching to an editor. Just stuff I found interesting.

For this most recent NPR piece, my editor asked if I wanted to refer listeners to my blog. This never came up before, my last NPR Commentary being four years ago, when the blogosphere was young. I didn't think much of the blog I had, but why not? Sure enough, some NPR listeners did go to my blog. And they liked it. (At this point, you're probably wondering why...)

Then a friend suggested I link my Facebook page to my blog, to increase traffic. Brilliant! (Thank you, Steve.)

The result: In the five days since my most recent NPR Commentary aired , the number of people who signed on to follow this blog jumped from 1 to 27 and counting. I've added 30 names to my e-mail list of people to notify about future columns, so it's now near 125. I have many new Facebook friends. And a whopping 875 people have visited my Web site!  That's 175 a day, a new record for me, by far.

So, bottom line: Hooray!  I'm encouraged. I'll keep writing essays in hopes of making those numbers even bigger. And then we'll tell publishers, If this many people respond to short essays, imagine how many my book can generate!

Is My Crip Better Than Your Crip?

(from 4wheelchairusers.com)

A friend writes:

     I'm the parent of a 26-year-old young woman with cognitive and physical disabilities. (She had a stroke at birth, and later had the left hemisphere of her brain removed to control intractable seizures.) I'm privately offended by the widespread casual use of the word "retarded" as a synonym for "stupid." I hear this from people with physical disabilities as well as the able-bodied. I also wince a little whenever I hear a person with physical disabilities ranting about how people are confusing him/her with a person with cognitive disabilities just because he/she is in a wheelchair. I completely understand where this frustration comes from. But I don't think the "ranter" understands that he/she is spreading prejudice against people with cognitive disabilities by conveying such a vehement "I'm not one of THEM" kind of attitude.

     Going even further, it's my observation that some people with physical disabilities are prejudiced against OTHER people with physical disabilities. For example, some of my friends in wheelchairs won't consider romantic involvement with another person in a wheelchair. They see the other person's disability as an impediment, because they want their partner to be able-bodied. Or, they feel insulted by the suggestion of dating within the disabled community, as if they're being asked to stay among "their own kind." That's not the point at all. See the person, not the disability. I thought that was the point.

To which I replied:

(from freedomtodrive.com)

    You're absolutely right about people with disabilities who shamefully put down other people with other disabilities, and too often those with cognitive and psychiatric disabilities are treated as the bottom of the totem poll. Happens all the time, and I don't like it. (Often, even paraplegics put themselves over quadriplegics, for similar reasons.) Sadly, it does seem to be part of human nature. African-American men who are attracted to white women (esp blondes) as status symbols (okay, blondes get put down a lot, too, without justification, and I certainly don't think anybody has the right to tell anybody else whom to date or marry, okay, but let's not get distracted), or more seriously, Hutus vs tootsies and Shiites vs Sunnis, etc...
    Why do we do this?

Well, dear blog readers, what do you think?
  Are people with disabilities prejudiced against other PWDs?
    Is it the same as infighting among other subpopulations?
      And most importantly, can't we all just get along?

***

An update to yesterday's quandary:

I've decided.  I've decided to turn down the Muscular Dystrophy Association's Quest Magazine. Decided I'd feel too onerous a conflict of interest, especially when writing future pieces that criticize the charity and its odious Labor Day telethons.

Anybody looked at Quest Magazine lately? (It is online, but I'm not posting a link here. Search for it yourself.) It does seem much improved, to me, compared to what it used to be, but unfortunately it's still part of an organization I can't stomach.

Feel free to educate me if I'm wrong. Go ahead--just try.

Moral Quandary: Your Help Needed

(Jerry Lewis, at a recent telethon)

Funny thing my recent NPR Commentary generated --

Among the flattering e-mail, which amazed and humbled, was a message from an editor at MDA's Quest Magazine. She wanted to use one of my blog posts as the basis for an opinion column in the magazine. If I could turn it into a good 1000-to-1200-word piece, she'd pay me for it.

Great, right? Maybe.

For those who don't know, I've been a pretty harsh critic of the Muscular Dystrophy Association. I've published columns against the organization and its Labor Day Telethon. I've participated in protest actions against it. It not only promotes pity, but refuses to aid in pursuing disability civil-rights issues. It refuses to divulge information about how many people with disabilities it actually employs, or how much power they have. It certainly doesn't hold its corporate sponsors to any kind of standard for accessibility or antidiscrimination policies. Don't get me started. (For more about this, look here or here or elsewhere, including scrolling down to my archives here).

When I and others have politely tried to get those in charge at MDA to change, our efforts were strongly rebuffed. In fact, we were insulted ... called names.

So yesterday, I told this kind, blameless editor, You sure you want me?

But then I realized the real question was, Was I sure I wanted to work for MDA?

To me, Quest has gotten better over the years. Sometimes I even read it now. But it's still the MDA organ. So I had misgivings.

Here's the thing: What she liked was my Glee blog, below. She liked my evenhanded way of looking at media, specifically media images of disability.

The primary problem is, my primary gripe against MDA has been the offensive, outdated way it's media--especially its annual telethon--broadcast unfair, exploitative images of people with disabilities. (Not sure I got all my adjectives in the right order in that sentence, but I hope you get the idea nevertheless.)

So the only way I could in good conscience write for MDA's Quest Magazine would be if I could criticize the way the organization portrays people with disabilities.

Yes, I know MDA has been wonderful for many families. It provides access to neurologists with expertise, if you don't have insurance to cover the cost. So in that, I might even give it high marks as a medical charity.

I have serious problems, however, when MDA represents itself as a champion of disability rights.

My beef with MDA is not the subject of this blog. Rather, this is a confession. I debated in my head, and out my mouth (sorry, my darling wife, for talking your ear off about this).

On the one hand, I'm supposed to be a professional writer. I take commissions wherever they're offered. On the other, writing for MDA would not only cost me cred in the disability community; it would be tantamount to a conflict of interest, especially if I ever intend to publish more words critical of it, its Labor Day Telethon, or its chairman Jerry Lewis. And believe me, Dear Reader, I do. I do.

Now, the Quest editor who contacted me is innocent in all this. And we have not officially concluded negotiations. That's because I haven't entirely made up my mind.

So I open it up to you, my blogosphere pals? What should I do? What would you do? And how much wood would a woodchuck chuck if a woodchuck could chuck wood?

Thank you for the kind words (& keep 'em coming)!

Hooray! To start the New Year off with a bang, my NPR piece was broadcast on Monday morning, January 4, 2010. Judging by the flood of kind e-mail I've received about it, it must have come off all right. I'm gratified and intimidatingly humbled about reaching so many people. Thank you all for listening and writing!

The actual transcript--slightly different from the one on the NPR.org/opinion site--is linked to my professional Web address at www.BenMattlin.com

For anyone who cares, here's the original long version of the Commentary--the one I submitted, before my editor made cuts to save precious broadcast minutes. Read on, keep listening, send links to friends and colleagues, and know that I'm always delighted to hear from you.

A GOOD ENOUGH YEAR

For me, the new year is as much about looking back as looking ahead. At least this time it is.

I turned 47 this past year. That in itself is miraculous. I was born with a neurological nuisance called spinal muscular atrophy. Nobody knew that at first. It can remain invisible for many years. Then it gradually, relentlessly weakens muscles.

In my case the weakening began at about six months. My mother noticed I wasn't developing as my older brother had. I didn't sit myself up, or stay up when put into a sitting position.

We now know that about half of the babies who manifest symptoms of S.M.A. die before the age of two. Their hearts and lungs become too weak to go on.

I was one of the lucky ones.

I've used a wheelchair my whole life and no longer have the strength to hold a pencil. Am I still one of the lucky ones?

I believe I am. Most days I feel lucky. Always have. So why do so many people feel sorry for me?

They don't know me, of course. They don't know that I was lucky enough to grow up in a good family, to graduate from Harvard, to get my writing published, even to marry and father two terrific little girls. I consider myself lucky for a lot of reasons.

Still, people who think they know me from what they see on the outside have said to me, "If I were like you, I'd kill myself."

This is supposed to be a compliment, I think. They mean to commend my perseverance, my pluckiness. So how come I want to say back, "No you wouldn't"?

(Or "If I were like YOU I'd want to kill myself, too!")

Yes, there are some people in terrible circumstances, with painful illnesses, who do want to die. But there are also many, many people living in conditions I don't envy--living in famine, in war-torn countries, or in abject poverty in this country--who retain a stubborn sense of hope and struggle on. People whose lives I wouldn't trade for my own.

It happens every day. Nothing all that extraordinary.

Don't get me wrong. I don't see myself as a kind of modern-day Tiny Tim, pointing out the good in people, cheering everybody up. No thank you. I reject holding myself up as an inspiration, an example of the triumph of the human spirit.

Anybody who really knows me knows that. At home I grouse and kvetch all the time. Why not? It runs in the family. Plus, life is rough. Especially for me, at times.

Like two years ago. 2008. I had to spend most of that year in a hospital bed. A surprise gastroenterological infection required emergency surgery. Then something went wrong under the knife. Myriad dangerous complications ensued. I nearly died.

But here I am to tell the tale. So yes, I do feel lucky. The year just past wasn't anything special. The usual assortment of good and bad. But it was blessedly drama-free, and after its predecessor that was enough to make it a good year.

Sure, I hope for better things ahead. I hope for continued good health for my family and myself. For our country and our world. I hope in the new year to do better than in the year just gone by. To finally get that book contract. To really master Facebook and Twitter. And to do more of these commentaries for NPR.

But even if most of that doesn't work out, I'd still say I'm lucky. Because sometimes just normal life is good enough. And for me, this life--life in a wheelchair--is normal. And that's good enough, too.

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