Saturday, October 25, 2014

Conversations about Inter-Abled Romance, part 2


Perhaps he sensed my hesitation.  "I didn't think too much about it," he said then, "but it upset me if I thought about it."

He continued his story, letting me know that everything had changed.  It changed because of his blog.  Shane practically lives in his blog.  For people with mobility impairments, the computer can be like a passport to the world.  And you can visit incognito—no one need know about your disability, or at least about the extent of it, about what you look like and how you talk and how you breathe and how you eat, all of which can be labored for someone like me.  And someone like Shane.

Of course, Shane holds nothing back from his blog.  That's part of its magic.  He's able to shape the way his disability and his life experiences are presented, and he does so with self-aware, unsentimental, unabashed gusto.

"Two or three years ago I got an email from this girl who said, Hey, I read your blog and I love it, blah blah blah," he explained to me.  "I kind of rolled my eyes like I do whenever I get one of those emails.  I just thought about moving on.  But she mentioned that she was local—fairly local …  About an hour or hour-and-a-half away.  She said that she would really love to meet me and hang out."

Shane's expectations were muted, tempered by experience.  "There was no suggestion of anything [more] at that point," he continued.  "So honestly, just for the hell of it, I sent her my number and said, Hey, let's text.  That would be fun … I didn't even think about it when I did it.  I just did it and I moved on …"

What developed was a virtual friendship, conducted entirely online and by phone.  "We sent texts back and forth," he said, " and a few days later we start talking about relationships, and I explained to her my whole difficulty with having a girlfriend because I rely on other people so much, you know, and that's kind of a turnoff for most young people.  At least [that's] the way I've experienced it.  And she came back and was very forward about it.  She just said, Honestly, all of that means nothing to me.  I would love to get to know you on a deeper level.  So I went with it.  And one thing led to another and she came over and we hung out."

The friendship stayed platonic over several more visits—she always visiting him, at his parents' house, because he lacked independent mobility.  His family did, however, allow him a high degree of privacy.  It wasn't unusual for Shane to spend hours in his bedroom on his own with his computer, so why not leave him alone in his room with a visiting friend?
Even when talk with that friend turned to kissing and beyond. 

Monday, October 20, 2014

Conversations about Inter-Abled Relationships

Lately I've been toying with an idea for a new book.  The proposal is to explore relationships between people with severe disabilities and their able-bodied partners.  My assertion is that we enjoy a level of closeness that other couples, if they knew, would only envy.
 
Here's an opening salvo …

I Didn't Want To Break Up If I Was Never Going To Find Someone Else

So many terrific young disabled folks—of both genders—feel not just rejected but utterly overlooked and ignored in our sexed-up culture.  Today the battle cry of disability activists invariably includes the testy assertion, WE ARE SEXUAL BEINGS!  It's a tremendous leaden loneliness. And they're not wrong to want equal access to …  all things.  That's the ultimate litmus test of civil rights. 

###

To get an accurate picture of the current climate, I asked a young man with a disability similar to mine about his romantic exploits.  Shane Burcaw is a 22-year-old blogger and author of the young-adult memoir Laughing At My Nightmare.  As charismatic and funny as he is to read, his biography could give one a different impression.  He lives at home with his middle-class white parents and younger, nondisabled brother in suburban Pennsylvania.  He uses a motorized wheelchair and weighs just 64 pounds.  Like me, he was born with SMA type 2. 

To skip over the boring scientific parts about SMA, just scroll down a few paragraphs.

###

SMA is a broad diagnosis broken up into four distinct types, depending primarily on the age of onset.  Mine became evident when I was about six months old, which is on the cusp between types 1 and 2.  (Type 1, sometimes called Werdnig-Hoffmann Disease, manifests in infancy, even at birth.  Half the babies diagnosed at birth die before age two; their hearts and lungs become too weak to go on.)  At six months, I wasn't sitting myself up the way my older nondisabled brother had.  When I was put into a seated position I tended to fall over.  Doctors told my parents I'd never be able to cry very loudly because I lacked the necessary breathing capacity.  That, Mom concluded, was the first clue that doctors didn't know what they were talking about.

To be clear, spinal muscular atrophy is a group of genetic disorders with varying degrees of severity.  The latest statistics indicate that one in every 6,000 babies is born with some version of it.  SMA might not be noticeable at first.  Symptoms can strike anyone of any race or either gender at any age.  Or you might be a carrier and not know it.  One in every 40 people has the gene, or some 7.5 million Americans.  If two carriers sprout a child, the kid will be a carrier and has a one in four chance of actually developing SMA.  Which is why my siblings don't have it, though it tends to run in families.

The U.S. National Institutes of Health explains the cause of SMA as "a loss of specialized nerve cells, called motor neurons, in the spinal cord and the part of the brain that is connected to the spinal cord (the brainstem). The loss of motor neurons leads to weakness and wasting (atrophy) of muscles used for activities such as crawling, walking, sitting up, and controlling head movement."

Everyone who has it is different.  In my case, the progression of the atrophy plateaued when I was about six years old.  That is, the rate at which I continued getting weaker slowed.  But—as I learned with great shock and a deep-seated sense of betrayal in my late-20s—it never stops completely.

###

Shane is palpably aware of the steady progression of his SMA—not daily, to be sure, but unavoidably.  I confess that, at first, I was turned off by his blog and book's implications (the blog bears the same name as the book).  The very idea of "laughing at my nightmare" doesn't seem to serve the cause of greater disability inclusion.  Don't we want to get away from pity mongering, the notion that we're ghoulish nightmare visions?  But now that I've gotten to know him and his work better, I've had a change of heart.  Maybe he's actually turning the stereotype on its head.  What's that old philosophy about how accurately naming something removes its power?  By turning his circus spotlight on that nightmare stereotype, he's helping lift the mystery and fear.

Shane's charm is certainly overpowering.

"Two or three years ago, I had never had a romantic relationship," he told me.  "I grew up with, you know, I had tons of friends, lots of friends who were female.  But it would never go any further than that.  I never pushed it with any of them because I didn't want to hurt relationships that were already perfectly good.  So at that point I was just kind of, like, whatever, maybe I just won't have a girlfriend.  Ever."

At that I didn't know whether to laugh or cry. 

To read more about my conversation with Shane, check back here in a couple days…

Monday, September 22, 2014

"TOMORROW," IT SEEMS, IS STUCK IN 1977


A friend in theater recently emailed me a perplexing question.  He's working on the touring company of "Annie" – you know, the musical – and wanted to discuss the curtain call.  "There is some debate as to whether FDR bow in his wheelchair.  What do you think? Is there something ableist about an able-bodied actor leaping out of a wheelchair?"

While you ponder that, I should explain that I saw "Annie" on Broadway in the late 1970s, when I was a kid.  I was so young (read: ignorant) that I had never even heard of The New Deal before.  I saw the first movie version in 1982, when my younger brother was a kid, and the 1999 Disney remake with my kids.  My kids were also in a school production a couple years ago.

So I know the delightful, irresistibly sappy kid-friendly musical all too well.  And it is to be commended for showing FDR in a wheelchair, an accurate and important historical milestone for those of us who use wheelchairs. But honestly, I don't recall ever noticing how the FDR character bowed at the end.

To my friend, I first said "I dunno" but then, on second thought, I DID know.  Maybe it was the word "leaping," but I realized I would personally be offended if I saw the FDR character rise from his chair unassisted to take his bow.  To me, it would feel as if the actor were saying, "Don't confuse me with one of them!  (I can do dance parts, too.)"

After all, I said, does Daddy Warbucks remove his bald-head wig to clarify he's not actually folliclly challenged? Does Annie herself toss off her red curly wig and binder to announce she's really a busty 21-year-old blonde (or whatever)?  Is it not customary for actors to stay in character during the curtain call?

He accepted my answer.  But then… 

Then my friend came back with this: What if the wheelchair isn't onstage during the bow?

Again, I reflected.  That helps, I said – just seeing him in a standing position, not actually in the act of standing up from his wheelchair (which the real FDR couldn't do unassisted anyway) – would remove some of the sting.  But I'd still prefer to see him remain in chair and bow while seated.

Well, my friend is not the director or producer.  He has no real power over such decisions.

And what was the final decision?  FDR would only stand up from his chair while the curtain is closed.  He would exit the stage, leaving the empty wheelchair behind.  Then, once the curtain was open, he would walk in to take his bow, then sit back down in the wheelchair to join the company.

Not perfect but not bad, I thought.  Still, I wondered why he of all the actors should break character for the final curtain.

It turns out the director is none other than Martin Charnin, who directed and wrote the lyrics for the original Broadway production back in 1977 and has been more or less involved in its production ever since.  Yes, he's the man responsible for the words to "The Sun'll Come Out Tomorrow" and "It's A Hard-Knock Life."  Gotta admit, they're catchy tunes.

Martin Charnin

Anyway, Martin does have the power, and he said this is how the FDR character has always taken his bow – since the original production. 

Who am I to argue with success?  It's not a big deal, right?  Or is it?

I asked my friend, What about the mysterious turbaned assistant, called Punjab in the original movie (played inexplicably, though well, by Trinidad-born Geoffrey Holder)?  He was taken straight from the original 1930s comic strip, but I can't recall if he appeared in the original Broadway show, perhaps under another name.  Anybody in the Blogosphere know?

At any rate, he was an offensive stereotype and is not part of the current production.
    
 


This led me to wonder how certain ideas and images become unacceptable while others can still slip by almost unnoticed. Many racist stereotypes have gained a degree of attention, of outrage, but equally offensive images of disability go by almost unrecognized.

To be fair, no one is suggesting that the FDR character NOT have a wheelchair. That was somewhat groundbreaking in 1977.  And seeing the actor standing at the end doesn't take away from that.  But for me it still jars a little. 

Note that this isn't the first time such questions have been raised.  Several years ago it was the cause of much debate in the design of the FDR Memorial in Washington, DC.  The designers eventually decided – wisely, I think – to only portray the president in a seated position.  In the main statue, you can't actually see what he's sitting on, but the smaller, lesser statue does show him in his homemade wheelchair.

Too bad that, 16 years after the Memorial debate, such questions can still arise. My young friend knew enough to be concerned, which I appreciate, but less enlightened folks still have no idea that there's even an issue.  (I wonder what the new movie starring Jamie Foxx will be like in terms of challenging stereotypes.)  Or am I being ridiculous?

What do you think?

Wednesday, June 18, 2014

BRIGHT LIGHTS, BIG DISAPPOINTMENT *

(*With all due respect to my good friend @JayMcInerney)

You are not the kind of guy who would be in a place like this at this stage of Obamacare.  With your biography, you could've been its poster child, but now you're in danger of becoming one for the opposition.

By now, everyone has an Obamacare story to tell.  While the Administration touts the 8 million Americans who signed up, many for the first time, others grumble about bureaucratic nightmares, abrupt cancellations, or online-exchange glitches. You've suspected the truth probably lies somewhere in the middle, but now you feel you've been had. You—an informed consumer who advocated for such reforms for years.

You hate yourself for writing this, providing fodder for antagonistic Republicans.  It gives you what psychologists call cognitive dissonance.  As a self-employed professional with pre-existing conditions up the wazoo—quite literally, actually—you craved the basic fairness of the Affordable Care Act.  Before it, your only option was an outrageously expensive PPO that paid 70 percent of in-network doctor bills and 50 percent of so-called "customary rates" for out-of-network services.  For this you forked over the princely sum of $10,408.80 a year in premiums. 

But as a "high-risk patient," you were grateful for what you got.  You were born with a neuromuscular weakness called spinal muscular atrophy; you've never walked or stood, and your lungs are so weak that a bad cold could kill you.  People like you can't be too choosy about their health insurance.  Employers rejected you, though you'd graduated from Harvard with honors.  The only work you could secure were freelance magazine assignments.  As an independent contractor, you had to secure your own coverage.  But when you aged out of your parents' policy, in the late-1980s, you couldn't buy health insurance at any price.  So you joined organizations—the National Writers' Union, the Media Alliance, etc.—just to score a group plan that didn't require a medical examination.  Still, carriers kept dropping you.  They called you too expensive.

The Clinton Administration brought passage of the Health Insurance Portability and Accountability Act, which enabled you to purchase insurance without any pre-existing-condition exemptions if you had proof of prior coverage.  A terrific help, this is how you ended up with the pricey PPO.  You clung to it for years. 

But last October you received word that it was ending, thanks to the ACA.  No worries.  You would be automatically shunted into a new policy that slashed your premiums in half and cut your co-pays to practically nothing.  Even when the application process faltered, you defended the new order.  Friends and family held you up as an example of its success.

Granted, your gratitude waned when you learned the new, cheaper plan excluded your local hospital and its doctors.  But soon, undeterred, you found a competitive policy and made the switch before the cutoff date.  Progress is always bumpy, you told yourself.

You were so innocent.

The weeks that followed were filled with obtaining authorizations for ongoing prescriptions.  Some had to be transferred to a new mail-order pharmacy.  Small hassles, to be sure, but you believed this was a phase that would pass.  Only when your primary physician suggested you consult a specialist—a cardiologist for a routine scan--did a true sense of panic dawn.   "The doctor won't see patients with any of the new plans," the receptionist politely but bluntly informed you. 

Ditto the second and third cardiologist referrals.  Next, your beloved urologist, whom you found only last year after rejecting several others, said essentially the same thing.  Even your long-time gastroenterologist and colorectal surgeon (six years ago you had a colectomy, hence the wazoo reference) blackballed you.

It seemed impossible.  You had been so careful, so sure.  A physician friend explained that the new plans are simply not paying doctors a fair and adequate rate.  Doctors who accept them are losing money.  This is how insurers are making up for what they've had to give up under Obamacare.  Soon, your friend cautioned gloomily, many doctors could go out of business.  It could become practically impossible to find any doctors willing to practice.

You do not believe it.  Obamacare couldn't be the end of medicine as we've known it.  Yet for now, you have to choose between seeing specialists you don't want or paying full-freight for ones you do.  In which case, why have insurance at all?  Then you remember: you don't have that choice anymore.

You are stuck—stuck with a cheap plan that doesn't serve your needs.  It doesn't matter that you went for the "platinum" option, foregoing tax breaks you might have received from the state-sponsored exchange.  It's still no good.  You even asked your broker if there's any kind of supplemental, stopgap policy you could purchase.  She said no.  You can't change anything until the next open enrollment in mid-November. 

Will there be a better choice then?  You can only hope.

Ben Mattlin
Author of Miracle Boy Grows Up: How the Disability Rights Revolution Saved my Sanity
Los Angeles, CA

Saturday, February 22, 2014

TAKE YOUR SEATS

The realization came in the course of searching for a new cushion for my wheelchair.  I use a wheelchair every day, all day long, and have my whole life.  Born with spinal muscular atrophy, a degenerative neuromuscular delight, I've never stood or even tied my own shoes--but I know a thing or two about wheelchairs and have bought cushions before.  This time turned out to be a fiasco.
 
To be sure, I could easily have purchased any number of standard cushions.  Your basic off-the-drugstore-shelf variety, however, wouldn't provide the support and comfort I sought.  My skinny, bony backside requires something more high-end and expensive.
 
From magazine ads and Web chatter I knew there were several new types of cushions on the market.  Until five years ago I used a fancy kind of memory foam.  Then I spent a grueling three months in the hospital, largely due to botched surgery, and developed my first (and so far only) pressure sore—a big, ugly, open wound on my tailbone.  When I at last returned to my wheelchair, my doctor recommended an air cushion to promote healing. 
 
I never really liked it, but it's been okay.  Then, recently, my right leg has been falling asleep.  So it's time to consider a change. Gel-filled? Hybrid foam-air? Latex-topped?  I called the local wheelchair clinic, which turned out to be not what it used to be.  I was asked for a doctor's prescription before making an appointment.  Which I did.  At the appointment, after presenting my insurance card and proffering my $20 co-pay, I was led to a depressing space where a beleaguered employee reviewed my paperwork and declared I needed to speak to someone else, who would call me in a couple days.  "Let me make sure we have your insurance information," he inserted before I disappeared. 
 
Only after driving away did I begin to think about how Blue Cross was going to be billed for a consultation I hadn't actually received.
 
But that was just the beginning.  Days went by, with no phone call.  So I called and emailed.  When I finally spoke to the seating specialist, she immediately suggested I might be underestimating the problem, wanted me to consider getting a whole new chair and possibly a new bed!  "Let me look into cushions first," I insisted.
 
She then proceeded to tell me she'd have to check my insurance before we could talk further. 
 
But that familiar insurance drill is only part of the problem.  First, there's the ridiculous, dim-witted, inefficient bureaucracy for even the simplest procedures such as choosing a wheelchair cushion.  More irksome still is the arrogance--the way we the customers/patients are so often treated as "cases" or faceless accounts, treated as kindly as witless children, but never respected or listened to.
 
I wanted to shout, "I don't care how trained you are—I've used a wheelchair for nearly half a century.  I am the authority here!"
 
That's when it struck me: I was experiencing a microcosm that illuminates the macrocosm: the plain, simple truth of what's wrong with our health-care system. 
 
It's not Obamacare, frivolous malpractice suits, big pharma, the declining number of doctors, the "brain drain" of young professionals who flee overseas, the aging population, nor any of the other bĂȘtes noires that experts cite.  It's something much more prosaic and closer to home.

If the seating specialist has something useful to contribute, she deserves to be respected and paid for her time, of course.  Yet if I go into a shop--even a high-end one--I don't expect to negotiate for the sales clerk's attention; his or her compensation is rolled into the purchase price of whatever I buy.  Why should choosing a wheelchair cushion be any different?  Why are we treated as something less than customers?
 
I concede that these professionals might have ideas I hadn't thought of.  That's why I contacted them in the first place.  I'm willing to listen.  I only ask that they give me the same courtesy.
 
Granted, this is but one little example.  Still, if this sort of condescending, time- and money-wasting nonsense goes on on such a small scale, imagine what's happening when there's real money involved!
 
Yes, there are bigger concerns—outrageous malpractice suits, greedy drugmakers, physicians who play God, and so forth.  But let's not be blindsided to the everyday, small-time pilfering and patronizing to which people like me have grown all too accustomed. 
 
Perhaps the solution to what ails our health-care system lies not from the top down but from the bottom up.  Tip O'Neill used to say all politics is local.  Maybe the same is true here.  You want to know what's wrong with the system, look no further than your neighborhood wheelchair dispensary.
 
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Friday, November 15, 2013

CHASING INSURANCE


Several years ago I launched this blog as a way to reflect on recent experiences or esoteric discoveries from which I'd learned something useful, something to remember for future endeavors. 

Finally, at long last, I might actually have a post that fits that original mission.

Yes, this is another story about health-insurance reform.  I've been a supporter.  I thought I knew all about it.  I thought we'd have no problems.

Blue Shield told me it would automatically convert me to a new plan that's not only better but would save me about $200 a month!  It sounded so good, I was going to add my wife and daughters (who have been covered by Aetna, which is leaving California).

Then I heard something on the radio.  It suggested checking your new policy's network of physicians to make sure your doctors are still included.  I hadn't thought of that.

Sure enough, the new and better plan had found a legal way to skimp--by shrinking the "network."  None of my doctors would be part of it.

When I called Blue Shield to double-check, I got a confusing answer.  "I don't know," said the customer service agent.  "Our computers might not be up to date.  Call your doctors' offices."

So I did.  The doctors' offices reassured me that they WILL still be part of the Blue Shield Preferred Provider Network.  No worries, right?

Still, the discrepancy bothered me.  I particularly didn't want to be recommending Blue Shield to my family if it was going to suck.

I called Jeni Blumenthal.  She's a local insurance broker.  Why didn't I call her sooner?  Well, I'm the kind of guy who goes directly to the insurers, that's why.  I never used a travel agent either.  (You older folks may remember when there used to be travel agents.)

Jeni instantly understood my problem, practically finishing my sentences for me.  "UCLA--" which is the group most of my doctors are part of "--is in the Blue Shield Preferred Provider Network only for group plans, not individual policies," she explained.

Aha!  In one sentence she had solved a mystery that had been dogging me for weeks!

Blue Cross, on the other hand, would cover the UCLA doctors but did not offer a PPO plan in my area, meaning if I went out of network I'd have to foot the entire bill.  Also, some of my doctors are affiliated with Cedars-Sinai, which I guess is so far away (half-hour drive, in Beverly Hills) that none of the local carriers would cover them!

But, she said, CIGNA was going to be offering a plan in my area that would include all of my doctors.  Details such as price won't be released until next week.

That's assuming, of course, that Washington doesn't change everything before then.  Honestly, health insurance has become like the weather in Boston.  If you don't like it, just wait a few minutes and it'll change.

So stay tuned!

Wednesday, September 18, 2013

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.
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