FAIRNESS FOR DISABLED WORKERS (AT LAST)?

In the last week of August, just in time for Labor Day, Vice President Joe Biden announced that the Obama Administration would pursue requiring federal contractors to fill at least 7 percent of their workforce with people with disabilities.

He was speaking at the American Legion convention, but the news resonates for all disabled Americans, not just the veterans he was addressing.

The specific target of 7 percent will give teeth to what has been a vague affirmative-action goal since President Nixon signed the Rehabilitation Act of 1973.  It follows upon President Obama's earlier promise to make the federal government itself a model of equal opportunity employment.  But this additional step is particularly meaningful because it fulfills a 40-year-old bipartisan promise to, as Biden said, "help ensure equal rights and employment opportunities for veterans and people with disabilities."

I was not yet 10 when the Rehab Act became law, but I was already a wheelchair-user.  I was born with a neuromuscular condition called spinal muscular atrophy, which rendered me quadriplegic.  The Rehab Act was the first far-reaching piece of legislation defending the rights of folks like me.  It took four more years, and nationwide protests and sit-ins, for one of its most important provisions—Section 504, which requires equal access for the handicapped in federally funded institutions and programs—to become codified.  As a result, I was able to attend almost any college I wanted.  At least in theory.  The law went into effect in 1980, the very year I graduated from high school.

Of course, that transition wasn't easy and this one won't be either.  At the time, some universities were frank about the challenges of accommodating a student in a wheelchair.  "It'll be damn difficult," one admissions officer told my father.  Others bent over backwards to avert a lawsuit, even accepting me before I had actually filed an application. 

I ended up at Harvard, one of its first—if not the first—quadriplegic freshmen admitted.

After all these years I assumed that the Rehab Act had done its job.  It had gotten stuffy old places like Harvard to accommodate students like me.  I did not know about federal contractors, about Section 503.

Some might say that in clarifying and enforcing Section 503, which merely required federal contractors to "develop and implement a written affirmative action program," the Obama Administration is fixing a problem that didn't exist.  To me, though, it's more accurate to say the president went out of his way to bring people with disabilities into parity with other minorities and women.

Indeed, the issue was barely on disability-rights activists' back burners.  A hotter concern has been the UN's Convention on the Rights of Persons with Disabilities, to safeguard disability rights internationally.  Or how to stop Medicaid from shunting recipients into expensive, neglectful nursing homes instead of allowing them home-based, self-directed care--a cause the president seems to favor, in his support of the Olmstead ruling.

But employment disparities should not be overlooked.  In June, the U.S. Department of Labor estimated that unemployment among employment-age people with disabilities was 14.2 percent, almost twice the 7.6 percent for the rest of the population.

Granted, some disabled people may be easier to employ than others.  In fact, an earlier Labor Department proposal for enforcing Section 503 called for a lower threshold of just 2 percent for the most severely disabled.  But we have to face the fact that there is still unwarranted prejudice.  Even with my Harvard degree, I never could find a job.  Instead, I took freelance writing assignments.  Voice-recognition computers certainly upped my productivity.  I'm using it to write this.

So it might take a little creative thinking, flexibility and technology to meet these employment goals.  Is flex-time an option?  Can some of the work be performed at home?  People who live with disabilities tend to be expert problem-solvers and self-starters.

My hope is that the new standard will help people with disabilities take control of their own lives and reduce their dependence on government subsidies. More than that, I hope it will help show the nondisabled coworkers what we're made of.  After all, the point of diversity and full inclusion is not just to benefit the marginalized.  It is to create the kind of synergies that can only come from expanding one's boundaries, from welcoming the new and different, and allowing the cross-fertilization of ideas. 

It's unfortunate this important piece of civil-rights progress was overshadowed by the following day's tributes to the 50th anniversary of the March on Washington.  It's surely something Martin Luther King would have supported.

###

The New "Ironside": Good or Bad for Crips?

When NBC announced a reboot of “Ironside” was coming this fall, you might have dismissed it as just the latest Hollywood rehash.  But for wheelchair-users like me, it’s either cause for celebration or an omen of despair.

The old Raymond Burr series about a tough-as-nails paraplegic ex-police chief was never exactly enlightened.  But as a disabled kid in the 1960s and 70s, I clung to it with near religious fervor.  For me, Chief Ironside was a model for refusing to be defined by others’ limited expectations.  I came to rely on him as a kind of lifeline.

I never could walk or even stand, but like the hardboiled cop I didn’t want to be underestimated.  I felt determined to live a full, active life--to strut my stuff.

So I welcome the return of “Ironside,” but with a note of caution.  Will the producers screw it up?

To be sure, the original program had flaws.  It never talked much about the Chief’s disability.  Yet that was partly what made the portrayal so appealing.  It was simply an aspect of his character.  It didn’t define him, just as mine wouldn’t define me.  I knew his fictional physical limitations were different from my real ones.  But for me, just seeing a guy in a chair who was fearless and in charge was revelatory and redemptive.

The old show had other shortcomings, too.  Ironside rarely had to explain himself to others, as I was always having to do.  “I can’t walk,” I would answer nosy strangers.  “I was born this way. … It’s a neuromuscular weakness called spinal muscular atrophy.”  On “Ironside,” no one asked because everyone knew.  He’d been shot in the line of duty. His reputation preceded him.  

He also had a knack for materializing on the upper floors of buildings with no elevator, and apparently never had a problem finding an accessible bathroom.  Late in the series, he even drove his own van without adaptive hand controls! 

Nevertheless, the show introduced me, and much of the world, to a wheelchair-accessible van, complete with automatic lift.  Ironside's office had a built-in ramp and speakerphone, too.  I didn't have any of that, and you'd better believe I wanted it all.  The empowering paraphernalia had the effect of magic, especially compared to the other prominent image of disability on TV in those days--the pitiful kids on telethons.

Granted, my memories are hopelessly tinged with nostalgia, as will be my appraisal of the new version.  I’m bound to tsk-tsk every little difference—such as moving the series from San Francisco, a source of endless plot lines in the days of Haight-Ashbury hippiedom, to New York.  And switching the composition of Ironside’s hand-picked team, if not eliminating it altogether, seems a no-no.  In the original, his crew included one of TV’s first female police officers (two of the first, actually, considering a cast change in year 4) and a smart young African-American man who frequently faced down racism as he rose from the Chief’s assistant to a full-fledged attorney.

Not to mention the casting of the lead role.  Instead of a heavyset, gruff-yet-avuncular old white guy, we now have his opposite in buff, middle-aged Blair Underwood (who, like Burr, became famous playing a TV lawyer). 

But none of that matters.  The new show could still win me over.  Yes, some will complain about a nondisabled actor once again portraying a paraplegic.  Even that doesn’t faze me, though, if he plays it well.  And by well, I mean realistically.

Indeed, a touch more disability realism than the original managed would be most welcome.  No, it shouldn’t overwhelm the story.  We don’t need to see Ironside’s bladder and bowel procedures.  This isn’t a documentary.  But every now and then, couldn’t the new Chief wrestle with equipment failure, pressure sores, strangers’ stupid questions, or architectural barriers?

Let’s face it: Simply presenting a tough guy on wheels isn’t enough to impress anyone anymore.  Not in the age of Stephen Hawking, “Push Girls,” or “The Sessions.”  Audiences are smarter than they used to be.  To get the willing suspension of disbelief, you've got to infuse some convincing details.

Better still, the new show could have a social conscience.  It could address the economic and political inequities people like me face. 

But let’s not get carried away.  If it doesn’t do any harm, that might have to be good enough.  Of course, I could be pleasantly surprised.  I never imagined we’d see so many people in wheelchairs riding city buses as we do today, or that Michael J. Fox would return to prime time with Parkinson’s (as is happening this fall).  Disability inclusion has come a long way. 

Perhaps the original “Ironside” helped make this progress possible.  Its new incarnation could play a similar role, as long as it recognizes its potential to open people’s eyes to life’s possibilities.

THE INSANITY OFFENSE

Scapegoating the Mentally Ill
(A work-in-progress, on the slow course of progress...)

The current national discussion about gun control, though plainly necessary and important, takes a dangerous turn when it sets sights on people with mental illness.

I don't have a mental illness and can't claim to understand the many varieties and ramifications of that diagnosis.  But I have a physical disability, which can be just as stigmatizing. 

 

I was born with spinal muscular atrophy, a genetic neuromuscular weakness.  I'm a lifelong wheelchair-user with pretty much no use of my concentration-camp-thin arms and hands. 

 

Sometimes when people see me they become a little afraid.  I don't want people to fear me, and I don't think we should fear people with mental illness either.

To be sure, the need to cut gun violence is paramount.  And I'm not against background checks to screen gun buyers for a criminal record.  Recidivism among violent offenders is alarmingly high.  That's a very different kind of precaution, though, from targeting those who rely on meds to keep their thoughts and emotions aligned.

I concede that mental illness enters the debate only in the context of preventing sufferers from falling through the cracks, to help them as much as to avert a future disaster.  This is not a modern-day witch hunt.  Yet I can't help feeling that the notion of using mental illness as a guide to identifying those who might be likely to commit violence one day just smacks of the disability equivalent of racial profiling. 

As someone who was not expected to live to adulthood because of a physical condition, but is now a 50-year-old husband, father, Harvard graduate, author and professional journalist, I don't put much stock in using a diagnosis to predict what people are and are not capable of. 

The fact is, the majority of people who are diagnosed with a mental illness are nonviolent.  Murderers, no doubt, are not in their right minds.  Yet many fatal shootings are never connected with a pattern of mental illness.  Gang killings, to name one prevalent variety, may be motivated as much by drug use or peer pressure as anything else.  Not to mention jihadists, who kill with religious fervor but rarely go for psychological evaluations.

To me, the assumption that the mentally ill have especially itchy fingers stems from age-old stereotypes.  Back in the 14th century Geoffrey Chaucer wrote that "cripples" were "crafty," in the sense of sneaky.  Where would nightmare tales be without disfigured, limping, one-armed, hunchbacked, peg-legged, hook-handed, and eye-patched fiends?  These are the forebears of the modern "psycho killer"—a dysfunctional, deformed mind and body signifying a defective soul.  

Science has been in on it, too.  Through the 1970s serious academic studies attempted to link particular physical traits with criminal behavior.  At some universities, college students were routinely photographed in various states of undress to document their proportions—the ratio between their heights and their head sizes, and other minutia—in an attempt to forecast their fates.

Don't get me wrong.  We must do all we can to curb gun violence.  But in our rush to solve a virulent problem, let's not resort to what is really nothing more than a form of scapegoating.  We might as well single out people from a particular neighborhood or socioeconomic subgroup that has a high murder rate—yet that would be unthinkable, wouldn't it?  Focusing on those with mental illness should be just as abhorrent.

###

http://www.youtube.com/watch?v=vdp42fYKFZ8

THE KING'S SPEECH DISABILITY

A quick note, then it's back to work:

Just saw THE KING'S SPEECH--finally. A fine, fine film … dramatically, cinematically, tonally, textually, texturely, musically, lightingly, mood-wise, etc., etc. The best picture Oscar was well deserved.

But…

From a disability-consciousness perspective, sorry to say it bothered me.

Now, this is a SPOILER ALERT, but by the end, King George VI is not so much cured of his speech disability as empowered to cope with it better. That's the good news.

Throughout much of the film, however, his stammering seems a sort of stand in for or emblem of the abuse he's endured from his stern father, teasing schoolmates, and others.

Does being forced to use your right hand when you're naturally left-handed, for instance, and other indignities, cause speech impediments? Really?

Of course, the movie doesn't say as much outright. And it is based on a true story. But I presume we don't actually know what exactly went on in the Prince of York's speech therapy sessions. Did all these personal matters truly get discussed? Much of the time, his treatments look more like psychotherapy than vocal rehab.

I guess that's the point. Throat exercises weren't enough. It took a combination of silly things like rolling around on the floor AND confidence-building psychoanalysis to make poor Bertie ready physically and emotionally to wear the crown.

Am I off-base here?

(In some sense it reminded me of GOOD WILL HUNTING. Which was a different kind of coming-of-age movie about a magical therapist, minus the physical impairment.)

THE KING'S SPEECH is ultimately about overcoming an affliction, is it not? No one else is made to change their ways, to meet him halfway, to accept or to accommodate. Perhaps that's a just sign of those times, the 1930s. You had to adapt to society's expectations or get out of the way.

But think of the dramatic effect if at least one person had said "let's change what WE do to be fair to you and your speech disability." Instead, he himself has to change--to work at making others more comfortable with him.

Now, I DID like the bit about Hitler being a good public speaker. Fluent, strong speech doesn't make you a good person.

Nevertheless, it further struck me that it's Bertie's wife Elizabeth who first gets him the help he needs. Either no one else felt he needed help before, or cared enough to try, or everyone else dismissed him as hopeless. We're made to see her actions--the inciting incident of the storyline--as an expression of love. She, in effect, saves him.

I wonder if that part is true-to-life. It's a nice, romantic notion. But how many of us with disabilities have learned it is, in fact, entirely up to us to resolve our problems--to fight for what we need and deserve, whether that's a specific technological aid or plain old justice!

No matter how supportive those around us may be, they can't fix us or solve our issues. They can't lead us in pursuing rehab, finding appropriate assistive devices, or seeking equality. In fact, those around us who do care often become understandably exhausted, lose patience. Why not? They have that choice. They can even walk away from the frustrations.

Whereas we can't. When your life or quality of life is on the line, you don't give up.

***

On a happier note, I was delighted to receive a pleasant e-mail about an NPR piece I recorded several years ago. I'm glad people are still finding it useful. He asked me to share a link:
http://network.crcna.org/content/disability-concerns/will-people-have-disabilities-new-heaven-and-earth#

Of Dragons and Disabilities

Over the weekend I saw "How To Train Your Dragon," the new DreamWorks cartoon and box office sensation, with my wife and our younger daughter. I'll spare you my rant about wearing 3-D glasses -- and my hope that this latest trend doesn't last.

What I loved about this movie was a completely overlooked, unexpected subplot detail.

Nobody told me there was a disability theme in the story.

One of the main adult characters, the Viking leader's no. 2 guy, is a double-amputee who keeps fighting, one of the bravest and most loyal of all. Not that he's an overcomer super-crip type. He just blends in. In fact, I didn't even notice his replacement limbs until halfway into the movie. Then, the primary cute dragon-cum-pet needs a prosthetic rear wing. Finally--well, I don't want to give away the ending. Let's just say another character acquires a prosthetic aid toward the finale, too, and after a pause it's no big deal. No rousing, uplifting, inspirational hoo-ha, and no tears. It's not glossed over, either, because accommodations must be made (and nobody can make them as well as the injured person himself, which certainly rings true for me). They all work together for the good of the mythical half-Norse, half-Irish (huh?) island kingdom, with full inclusion for those maimed in combat.

Wow! Very cool.

I hope it teaches kids something about the value and acceptability and normality of assistive devices, prosthetics included. You know, in a way the story is dead on. Historically disability and war have always been closely linked. One of the earliest known references to disability-related hardware comes from an ancient Sanskrit text that tells of an Indian warrior named Queen Vishpla, around 3000 BCE. A battle injury led to the amputation of one of her legs. An iron leg was made to replace it, and she returned to fight again. (See the Disability History Timeline)

Motorized wheelchairs might not have been invented if not for the veterans of World War II--improving upon designs putatively sketched by George Westinghouse in the late-19th century and, later, British engineers during the first World War, for injured soldiers and civilians. In the early 1950s a Canadian inventor named George Klein supposedly perfected a model motorized wheelchair for WWII vets, which in 1956 became mass-produced by a California folding-wheelchair manufacturer called Everest & Jennings. Though those early chairs were notoriously slow, E&J dominated the wheelchair market for the next 30 or 40 years. (See A Chronology of the Disability Rights Movements)

So hooray for the understated disabilities theme in the dragon movie! Overall, the story ain't bad either. But next time, if I had it to do over again, I think I'd go for the 2-D version. The tickets are cheaper anyway.

University of Southern California/Rancho Lifestyle Redesign

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.

GLEE's “Wheels” episode

I might get in trouble for writing this, but I really liked last night's "Glee." It was the wheelchair episode of the Fox network's hit TV series--you know, the one in which the whole group, in trying to learn greater empathy for their wheelchair-using member Artie, spends time in wheelchairs.
It brought up issues such as why it's unfair to have the wheelchair kid travel in his dad's car instead of the club's bus (the school won't pay for an accessible bus). And the lack of ramps around the school.

It even ended with the kid's annoyance that the others are only pretending, that although the fact that they're spending time in wheelchairs seemed nice at first--he goes so far as to start a romance with the girl who stutters, sensing a kindred spirit--the others can always get out of their wheelchairs … a choice he doesn't have. I, too, have always had doubts about these kinds of exercises in empathy.

I acknowledge that, at times, he was a tad pitiful in his isolation and exclusion, but it rang true for me. And he was strong in that he taught the others how to dance in a wheelchair. He was teaching them instead of being helped or pitied, and not in a sappy or inspirational way.

The only problem, in case you haven't heard, is that the actor playing Artie (Kevin McHale, apparently from a band called NLT) does not actually have a disability. He does it well, I think. The way he sits. The way he moves. Could have fooled me. But sadly, no, the actor is able-bodied. And, so far anyway, there hasn't been a scene of him dreaming of walking or anything like that, thank God. He's always in the wheelchair. Which is to say there's no reason for his being played by an able-bodied actor, no excuse for not hiring an actor who can't walk.

Why on Earth not choose an actor/singer/dancer who really does use a wheelchair?

Not that he should have been excluded because he's not disabled. Let me be clear:

I have nothing against nondisabled actors portraying characters with disabilities IF actors with disabilities are also given the chance to portray characters that don't necessarily call for disabilities. If you're casting a doctor or lawyer or cop or whatever, why not use or at least consider an actor in a wheelchair (or who's blind, deaf, etc.)? That would be fair.

Unfortunately, the entertainment industry is not fair. From what I've heard, although the producers of "Glee" claim it's hard to find someone with sufficient talent for their unusual program, they DIDN'T EVEN CONSIDER PERFORMERS WITH DISABILITIES. They can't say the talent wasn't there, because they didn't audition any.

"It was very hard to find people who could really sing, really act, and have that charisma you need on TV," Brad Falchuk told USA Today (linked below). Falchuk is an executive producer of "Glee." Another thing he found hard, the poor dear: "It's hard to say no to someone that talented," he said, of McHale.

Hey buddy, you think YOUR life is tough?

(A familiar tactic: the guilty acting like the victim.)

Would having an actual crip in the role have enhanced last night's storyline? Impossible to say. I thought the story was well done anyway. But the casting is definitely, patently unjust to performers with disabilities. There are so few roles for them, yet so much talent.

Possibly the best current example of an actor with a significant disability in a role that doesn't require it can be seen in the original "CSI," the CBS phenomenon. My old friend Dave Hall, a.k.a. Dr. Robbins, struggled for many years as an actor who uses crutches. He worked, but not enough. Did a lot of radio and cartoon voices. Until "CSI: Crime Scene Investigation" came along nearly a decade ago.

The latest addition to the short list of TV programs featuring actors with real, highly visible disabilities is "Brothers," also on Fox. The comic actor Daryl "Chill" Mitchell is a strong character in an unfortunately mediocre sitcom, it seems to me. Okay, I haven't watched many episodes. And the little bit I've seen bothers my disability consciousness. Look at the background sets, for example. The bar he co-owns with his brother has three steps at the front entrance. How does the dude get in every day? Is there a back entrance? (If this or other access issues were dealt with in an old episode I missed, I hope someone will let me know.)

Here's the point: "Glee" errs in having a nondisabled performer portray a wheelchair-user. That's for sure. It's the disability equivalent of black- or yellow-face. Nevertheless, it's gone further than any other program I can think of in bringing disability issues to the fore. No, its treatment of accessibility and acceptance and such may not be perfect. It isn't everything activists want. But let's put its shortcomings in context, shall we? To some, its gay character, Kurt--is the actor, Chris Colfer, actually gay? I have no idea; doesn't matter, since so many (secretly) gay performers do get work playing straight roles--is fairly stereotypical, too. He likes musicals and talks a lot about his fashion sense. He doesn't really advance gay issues much, does he? Kurt also figured prominently in the wheelchair episode, but to me to less eye-opening effect.

Then there are the bimbo blonde cheerleaders, the smart nerdy Asian kids, the heavyset African-American woman who sings a mean gospel, the dumb jocks, etc. Stereotypes, all! But in a way the show turns those stereotypes upside down. It makes fun of making fun of people. And it celebrates the differences.

If "Glee" is going to put together a group of minority misfits, isn't it great that it's including disability--at least conceptually, if not in actuality--as part of the mix?

Sometimes it takes a member of the majority culture, an insider, to bridge the gap (open the door?) to integrating a misunderstood minority group into the mainstream. I know this firsthand. Many bigots find it easier to accept me as an equal when they see me being accepted by people like themselves, that is, in the context of my nondisabled family. It's as if, if SHE can accept him, then maybe I can too . Mr. Spock had to have Capt. Kirk to make him acceptable--likable, even sexy--to a mainstream audience. It shouldn't be, but it is so.

Do the ends justify the means? That is, do the benefits of the "Glee" episode outweigh the sins of disability blackface? I'm not an actor, but from where I sit, whether justified or not, the result--bringing into TV watchers' living rooms the concept of the importance of providing a sufficient quantity of ramps and accessible, integrated buses--looks like a good thing, a measure of progress toward integration.

And after all, isn't integration what it's all about?

For more on this subject, see:
http://www.usatoday.com/life/television/news/2009-11-10-glee-wheelchair_N.htm
To view the actual episode (or others), go to hulu.com or
http://www.fox.com/glee/

I AM the health-care debate

The health-care arguments and counter-arguments may aim at and ultimately impact everyone, but perhaps no one more than me. How can I make such a preposterous claim? Simple.

First, I have a pre-existing condition. I was born with spinal muscular atrophy, a severe, degenerative neuromuscular weakness. I've never walked or stood, and have limited use of my upper body.

Having a pre-existing condition is not so big a problem insurance-wise as it used to be. In the Clinton administration, new regulations were passed that basically require insurance companies to accept a subscriber with pre-existing conditions if he or she was covered by another insurance carrier in the past year. This made a big difference in my life. Still, for that coverage, I have to pay an arm and a leg. Yes, even if they're an atrophied arm and leg.

That's largely due to the second reason I'll be deeply affected by health-care reform. Because of my lifelong disability, I've never been able to land a real job. Despite graduating with honors from Harvard College 25 years ago, I've only received temporary, short-term assignments, never full-time employment. Thus I have to go shopping for my own health insurance.

When Obama opponents worry that he wants the government to take over health care, I don't listen. (A) It's not true. And (B), if it were true, I'm not sure that would be so bad. The government couldn't do a worse job than the for-profit insurance and pharmaceutical companies.

When they call Obama's plan Socialist, it's meaningless to me. Considering what rampant capitalism has done to our economy and our health-care-delivery system as I've experienced it, Socialism begins to sound pretty good.

But when the right wing cautions that a government insurance option will lead to rationing of medical services, that's when I take note. I know that when it comes to rationing I'll get the short end. Those of us with significant, continuous disabilities are a bigger draw on the nation's scarce health-care resources. I know that's true. If you're counting dollars and cents, keeping people like me alive and healthy just doesn't add up.

I know this, because I already feel the squeeze of rationing from the managed-care system we have today.

Don't get me wrong. I've been lucky. But the question of whether it's worth providing equal quality medical care for someone like me, a 46-year-old quadriplegic (who also happens to be a husband and father of two daughters), became dangerously clear last year, when I was hospitalized for gastrointestinal infection and septicemia. I was unconscious, inches away from death, I'm told. Before the doctors would perform their magic, they asked my wife, "Are you sure you want us to do this?"

In other words, should should they provide me with the same degree of life-saving intervention as they would anyone else?

So for me, the risks of bureaucratically controlled medicine and rationing already exist. I only hope the Obama plan--or whatever reform ultimately passes, and I do hope something does--will include a provision to guarantee equal access for all, including or perhaps especially the one in five Americans who has a disability.