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 ...

"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.

    

 

(Click here for musical number from the 1982 film, with Punjab & other stereotypes.)

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?

Guilty pleasures

1. Amazon.com. While I was shopping online for some stuff for my daughter, I came across a DVD of old black-and-white mystery movies. Four movies on one disc. It was about the price of a rental. I added it to my cart.

2. Old black-and-white movies. So last weekend my wife and I popped the DVD of old mysteries into the machine. We had seen (and liked) "The Kennel Murder Case," with William Powell as private-eye Philo Vance, before, so we skipped right to something called "Eyes in the Night." It starred Edward Arnold as wealthy private investigator Duncan "Mac" Maclain, whom I'd never heard of. Well, not only was it a pretty good little flick, but Mac happens to be blind. Now, before the PC police get on me, the disc did not have Closed Captioning or Descriptive Video. Nevertheless, I thought the depiction of disability was pretty cool. He doesn't have superhuman hearing or smell, but he is constantly under-rated, especially by the bad guys. He does things like turn off the lights to disorient the bad guys. Naturally, the darkness has no effect on him, so he can knock them all out. Which is improbable, to be sure, particularly because Edward Arnold was pretty pudgy. But as I say, he's not superhuman. At one point he's rescued by his well-trained guide dog. (I wonder if all the movies on this disc involve dogs. I'll lecha know. )

3. Old TV shows. The blind detective led me to think about "Ironside," the old wheelchair-using detective series I loved as a child. And not just because Raymond Burr was even pudgier than Edward Arnold! I discovered the first three seasons are on hulu.com … and I've been addicted to them. I realize it's totally unrealistic--the dude ends up in all kinds of places, including, say, the second floor of a two-story house, with no explanation as to how he got there. In fact, he never calls ahead to check on access, which was even more of a necessity in those days than now. And the things he's able to do with his upper body and arms make me wonder why he's not using crutches instead. But there is a ramp in his apartment/office. And he does have a lift-equipped van (a lift-equipped truck, actually, in the first two seasons). By the end of the series, a decade or more later, I think he was driving the van himself, though I don't recall any hand controls shown… Again, not the best depiction of disabilities, but I can't help loving it. Something about seeing this guy in a wheelchair living a more-or-less normal life--bossing everyone around, no less!--feels good. Or maybe it's just nostalgia.

If you have favorite disability portrayals, or other guilty pleasures you care to share, please send them to me at bmattlin@post.harvard.edu

HALLOWEEN'S FREAKS

Welcome, NPR listeners!

As will soon become eminently clear, if it isn't already, I'm a poor blogger.

Lately, I've been using this site primarily to push and preview my book-in-progress, MIRACLE BOY GROWS UP.

But today, I'm going to print the original full-length script of my recent NPR commentary, as read and recorded at NPR West studios last week. Not much different from what was broadcast, except the intro.

As always, please click FOLLOW on the right, follow me on TWITTER, friend me on Facebook, watch my book promo on YouTube, or drop me an e-mail (as long as it's kind).

The more of you, the better to convince publishers to put my book out there.

Thanks for dropping by.  Keep in touch…

HALLOWEEN'S FREAKS

For me, Halloween can be an odd, unsettling holiday.


I have a severe, highly visible disability. I use a wheelchair that I drive with my mouth, and my spine is hopelessly curved. Sometimes people stare at me.


I never thought about a connection between disabilities and Halloween till I learned of the once-common fear of deformities--the limping, hunchbacked, hook-handed, or one-eyed monsters of ancient fairytales and old HORROR movies.


Even the word "creepy" comes from the same word as the oldest term for folks like me, the politically incorrect "cripple."


When people with disabilities weren't feared, they were often gawked at in carnival freak shows. Or objectified for their noble suffering, like Tiny Tim. As if we really had any choice about it.


As a kid, I tried not to think about what people might make of me, sitting in a wheelchair in my Batman or Lone Ranger costume. A hero who can't walk? Why not? Halloween is a celebration of the imagination, after all!


Sure, some kids teased. But I often scored more candy than my brother, who is not disabled. I saw no reason to complain about being treated differently.


Yet as an adult I began to feel uneasy about the creepy exhibitionism of Halloween, the way it encourages staring at all things weird. I can't help wondering if Halloween doesn't promote ridiculing differences, even a kind of conformity.






Yes, I know, for most people Halloween is an escape from conformity, but for those of us who don’t quite fit the norm, that's nothing special. In fact, demonstrating that you're not exactly what people expect is pretty much what disabled folks do every day.


When I take my own kids--who do not have disabilities--trick-or-treating, I often attract as much attention as they do. And no one likes being stared at that way.


It's not the same in daylight. When kids see me on the street, careering in my power wheelchair, they often say things like, "Wow! Can I have one of those?"


Hey, my chair IS an amazing, transformative device.


"Cool, isn't it?" I'll say back.


I figure I should do my part to make kids comfortable with people like me. Sometimes I have to tell the adult with them that it's okay, that kids shouldn't be forced to look away. I encourage them to ask questions, to learn.


Maybe I should see Halloween as an opportunity for grown-ups to do that, too. The holiday challenges us to stretch our perceptions. Maybe it can also teach us not to shrink away from the unfamiliar or judge appearances.


This Halloween, I'll try to remember that I really have nothing to fear.

###

Part 11 of "Miracle Boy”

On a half-cloudy November afternoon a girl named Carrie crawls across a classroom tabletop toward me, grinning. Bony and high strung, with long black hair she's always tucking behind her ears, one of many ticks, she's a friend but not a member of my Club. I call my group of best friends a Club, a restricted club, and though it has no benefits other than wheelchair-pushing prerogatives, the other kids seem to like being members. "Hi, Ben!"


"Carrie … what're you doing on the table?"

She inches closer. At the edge of the table she says "hi" again. Then she's practically in my lap. She reaches out and begins unbuttoning my navy-blue corduroys and unzipping my fly—

"Carrie!" Judy yells from across the room. Carrie's white-hot face falls like a startled soufflé as she looks up, unhands my pants. Judy marches over. "Back to your seat!"

Silently, Carrie crawls away. Judy steps closer and closes my pants. No more is said about the incident, and I laugh. Later, when Mom comes to pick me up, Judy tells her what happened. They talk in soft voices. On the walk home Mom tells me to let her and Judy know if anything like this occurs again. Some children have a hard time accepting my handicap, she says. That's not so, I say, not in this case. Mom says she understands it was just play, but still. I say okay, but I'm lying. I don't want to tell Mom or Judy or anyone else if it happens again. If I commented on all the odd things people do around me, I'd never shut up.

For instance, I never tell about Quentin. He's a long-haired, pale-skinned, rangy boy with a taut, satanic grin who frightens me. It's not merely his appearance. It's something about the way he looks at me, or doesn't, with his fanatical eyes. I try ignoring him. He's one of the reasons I surround myself with friends, as a defense. Quentin pays us no mind, and at first I congratulate myself on a strategic victory. All goes smoothly, but only for a time.

***

Part 10 of "Miracle Boy”

And so we return to "Miracle Boy Grows Up."  Here's the next installment --

Walden's old location, at W 88th Street & CPW, courtesy http://www.thecityreview.com/uws/cpw/cpw279.html

“…a high-rise apartment building at 279 Central Park West that replaced the Italian-Renaissance-palazzo-style Progress Club that was subsequently converted into the Walden School.”

I start first grade at the Walden School, on West 88th Street. It's a regular, albeit progressive, private school with a liberal admissions policy. I mingle with kids of all colors, many scholarshipped, many others from the creative elite of the Upper West Side. As the only wheelchair-riding student, I'm a pioneer of sorts. It's not exactly wheelchair accessible—each morning Dad has to schlep me, in wheelchair, up a small flight of steps at the entry, and every afternoon Mom hauls me back down again.



One evening I overhear Mom and Dad talking in the kitchen. They are grateful for Walden. Dad says he isn't sure about its prestige but Mom says it will be fine. Best of all, she says, Walden doesn't see me as a typical handicapped kid. Dad agrees. It's making an exception for me, he says.


Judy, my new class teacher—a tall, slender woman with dark hair and warm eyes as expressive as a cartoon character's—quickly makes accommodations. For example, at the end of the first week she gathers the entire class in a circle and introduces me. Just me! She explains why I use a wheelchair and then says something funny:


"Would any of you like to touch Ben's wheelchair?"


If they touch it, she explains, they won't be afraid of it. She is making a kind of case study of me, testing the concept of mainstreaming for her master's thesis.


I'm startled that anyone would be afraid of my chair. Yet right away a few hands shoot up, then more. Soon I'm surrounded by grubby eager fingers. Many of these kids quickly become my new best friends. Within a day I'm appointing a trusted subset to be my first choices for wheelchair-pushing. We make a game of it—they compete to be my Chief Wheeler, and I choose the winners. "You were totally accepted by your classmates because you were so cute and so bright, just like everyone else, except you were on wheels," recalls Judy, my teacher, four decades later.


At the end of the semester she notes on my report card that I have "leadership skills." If so, it comes from necessity. It's a survival skill, a form of gentle manipulation that maybe all handicapped kids learn. Taking charge. Putting people at ease.


One kid, however, isn't so easy to figure out.

[For more, come back in a few days ... and thanks for reading!]

Part 7 of "Miracle Boy"

First of all, readers, I have finally posted a promotional clip for this book proposal. It seems to be necessary these days for authors to double as pitchmen (or pitchwomen).

http://www.youtube.com/watch?v=i0eyffGTHLU

Now, on to the business at hand -- the latest installment of MIRACLE BOY GROWS UP ... (O, that I were in your shoes, encountering these words for the first time!)

***

Finally, finally, finally the door opens and Mom and Dad come out and they're smiling and talking and shake hands with Dr. Spiro, who waves at me.


"So what was that all about?" I ask in the elevator. Dad's pushing me. I'm facing the back wall but it's a mirror so that's okay.


"Just grown-up talk," says Mom.


Mom is intense and coiled-up inside, like something forceful and beautiful wrapped in a tight package. She's about a foot shorter than Dad; Dad's a good six-feet-two-inches, with broad shoulders, though he's not athletic. One of the things Mom and Dad have in common is a great faith in doctors. To them, medical science holds all the answers. "It's not so many years since a man named Dr. Salk cured polio," Mom has told me many times.


I'm not too keen on the idea of a cure for my amyotonia, though. I'm used to my life as it is and any change would be really weird to get used to. I'm not so badly off as many people think I am. I'm not. I'm not like other handicapped kids!


In the car, my chair folded and crammed between the front and back seats, Dad driving, Mom tells me more. We always take the car to Dr. Spiro's because his office is in the Bronx or Queens or someplace like that. "Dr. Spiro is pleased with you. He feels you're doing fine."


"He always says that,” I say, even though it feels good to hear.


"He sees almost no change from last year, which means your amyotonia may be stabilizing. He says it's now called spinal muscular atrophy. You're not losing strength, and you should stay the same your whole life. You know there's no cure still, but you're not getting worse."


You mean I could have been getting worse? I can't recall a time when I had more strength than I have today. I'm told I crawled a little as a baby, which I can't do now, but I figure I was smaller and lighter then. In any case, I don't remember it. I have no sense of lost capacity. So Mom's news ripples past me with little impact.


Mom says we know the worst of it now. She sounds relieved as she says this. From behind the steering wheel Dad adds, "That's good news," in case I didn't understand. If it's such good news, why was I kept out of the doctor's office? And what took so long in there? Just grownups' way of doing things, I guess. I look out the car window. It's getting dark.


If the bad guys pulled up alongside our car now and started shooting, I'd crash out through the window and jump on top of their car. I'd reach inside their window and pull out the driver. If the car started to skid off the road I'd jump off just in time. I'd roll on the ground with guns flaring. They'd run and I'd chase. They wouldn't have a chance. Even if they thought they had me they'd be proved wrong. Just when the bad guys felt I was down and out, I'd shock them by coming up strong and defeating them all, just like I surprise doctors with my strength and intelligence ...


"Of course, you're not going to get any stronger either," Mom says then. "There are no treatments for spinal muscular atrophy, none discovered yet anyway, but that's okay, isn't it? We'll keep hoping, but meanwhile we have to get on with our lives."


I can't read her face. There's a sharp turn at the end of the Triborough Bridge. I know it's coming. It always makes me tip over sideways in my seat, and I silently brace for the inevitable.


***