Saturday, November 29, 2014


Like all romantic entanglements, the reasons for their tensions—tensions, which eventually led the invisible rubber band between them to snap—weren't quite clear.  Or maybe they were entirely too clear.  Telling me about it, Shane struggled for the right words, but his meaning rang with the clarity of breaking glass.

"For a while, she was planning on moving up here to be with me, to be able to help out with all my stuff," he explained.  "She wanted to be the one that takes care of me.  And for an 18- or 19-year-old to be committing her life like that, it's not, I mean—when she asked me for the breakup I was upset, obviously, but I knew it was the right thing to do.  I can't expect her to give up her life for me at this point in her life."

I asked Shane the question he seemed, to me, to have been hinting at: Did she get flak from her family or friends?

"Yes," he replied without skipping a beat.  "Okay, that's another thing.  Probably like three or four months into the relationship, she started telling me about how her sister and the woman they live with [a close family friend/guardian], how they didn't really agree with her being with me.  I've met them, and they're not evil people.  But, like, for instance, once the woman said something like, She's not going to be able to take care of you and provide for you, and all that stuff.  Her aunt was also kind of against it and didn't really understand what she saw in me, because of the wheelchair.  It made [my now ex-girlfriend] so mad.  She was livid at them.  But I think honestly being around them all the time, like, some of their thoughts kind of slipped into her mind.  And she started to see their perspective more than she used to."

There was peer pressure as well.  "Her sister … has an able-bodied boyfriend," Shane explained.  "At their age they're running around having sex all the time.  They drink, they go out.  I think she sees that and even though she doesn't want to be that shallow, she also kind of wants to be a young person.  And I want to give her that."
            It forces you to mature fast—or at least it makes you act mature, whether you feel it or not—having a profound disability. 

Thursday, November 20, 2014


Then came a surprise Christmas gift.  "In December, I was in my bedroom and my brother was home for the holidays—home from school—and he was like, Hey, my friend is coming over tonight, just so you know.  I was like, Okay, that's weird.  He was being a little weird.  And it turns out she comes walking into my bedroom!  She had, like, planned this all out with my family to come visit for Christmas.  I didn't know.  It blew my mind.  So we spent like four days together, which was awesome.  But still just as very close best friends.

"Then she went home and we–I'm trying to remember how it all happened–she came back for her spring break.  So she was here for, like, another week.  And during that time we kissed for the first time.  And it was like a big moment or whatever.  But still … her fears were, she'd lost her mom to cancer when she was, like, 14, and knowing what she knows about SMA she was worried that something would happen to me and she would lose someone else whom she loved so completely, so it was hard for her.  And I understood that.  I can't say to someone honestly, I guarantee nothing will happen to me.  'Cause, you know, I could get sick tomorrow and that could be the end.  So it's tough.  It was probably the toughest part of that relationship with her."

Or at least up until that point.  Tougher moments lay ahead, but not without interludes of sublimity.  "That summer she was here for a while, like a month," said Shane.  "And early on in that trip she finally said, You know what?  I've kind of forgotten my reasons for wanting to hold off on the relationship.  So let's just do it.  So we made it official."

The next eight months were "seriously the best time of my entire life," he told me.  "She came up here, like, once a month. … I taught her how to lift me, so we were able to be intimate.  So that was cool."

Cool though it may have been, there was soon trouble in paradise.  "We had our fair share of problems," Shane acknowledged.  First, there were mobility/transportation inequities.  "Sometimes she would kind of say, like, you know, I'm giving up so much of my life to be with you.  She would say, I know it's not your fault but, like, you don't ever come down to Florida.  And I'm like, it's just difficult.  And she was like, I just want someone that can be here for me and, like, help me and hold me.  Stuff like that.  That was really tough because she knew—we both knew—that there was nothing, it wasn't my fault.  It was just the way things were. 

"We always found a way to work through it.  We had our moments where, intimately, I wasn't able to do everything as good as an able-bodied person might be able to do.  So we had our late-night fights where I'm apologizing and she's telling me not to apologize, but I feel bad and she's saying don't feel bad, but she's obviously upset.  That kind of sucked.  But we got through it. 

"I've never loved someone as much as I loved her.  And I think she would say the same thing about me."

          But happily ever after it wasn't. 


Saturday, November 8, 2014

Conversations about Inter-Abled Romance, part 3

"The first time I taught her how to lift me, that was like a big step in the relationship!  She was nervous but she wanted to try it, because we couldn't really be intimate with me sitting in the wheelchair," said Shane.  "So I told her it's fairly easy.  I don't weigh that much.  I kind of assessed that she was fit enough to be able to do it.  [It's] something I have to think about when I'm talking to new people.  I immediately size them up and figure out if they'll be able to lift me or not.  I don't have any type of lift device in my house or anything."
I asked if this girlfriend had any kind of experience with people with disabilities of any kind.  "None at all," he answered.  "She was in one relationship before me.  But no one who had a disability."
Though it was a new experience for both of them, in different ways, they managed matter-of-factly.  Honesty, open-mindedness, patience, and perseverance got them through.  "We were able to be intimate once I was out of my chair," Shane continued.  "I was 19, and that was the most amazing experience of my life.  It was different [for her], obviously, but she didn't mind it.  I was able to do enough on my own that it worked out."
But that's not the end of Shane's story.  As if in answer to my unspoken question, Shane told me that good sex alone wasn't enough.  "A few months later," he went on, "I was really thinking about us, and all that, and I realized that I didn't really connect with her.  The only reason I jumped on it was because she was the first person who really wanted anything more than friendship with me.  That was really tough.  I didn't want to break up with her if I was never going to find someone else.  I didn't know if she was, like, an oddball. … At first I lied to myself and said, Oh yeah, it's much deeper.  But over time I admitted or realized that she was not a person I enjoyed being around.  So yeah, I had to let her go."
He said his "conscience wouldn't allow me to be with her if it was only for the physical stuff."  Which struck me as a mature observation for a guy who was at the time only 19.  "She understood that I was young and inexperienced and didn't really know what I wanted yet," he reflected, adding that they still talk occasionally.  They're still friends. 
The woman was 22.  I began to wonder if an age difference was a key element to interabled attraction.  After all, ML is three years older than I am. 
Shane soon put me off this thought.  "My second relationship was kind of the opposite of that one," he said with a chuckle.  On his blog, he'd requested volunteers for a nonprofit video project.  "This one girl from Florida was one of the people [who responded] that I selected—and really it was completely business," explained Shane.  "We worked together that summer from a distance.  She stayed in Florida.  And we worked via Skype and texting and email and all that."
She was only 18; Shane was now 20.  Working together, they became close friends.  "Probably my best friend, I would say, that I had at that time [though] we had not actually met in person."
Even after the video project was done, they kept in touch.  "We Skyped every night, pretty much, and it got to a point where I told her that I liked her and she told me that she liked me, more than friends," Shane recalled.  "But because of the distance and some hesitations that she had about everything, including my disability, she just finally said I'm not ready to be in a relationship yet so let's just hold off.  It hurt but I understood and I didn't want to push her."
Then came a surprise ...

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


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


(*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