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An Eye-Opening Wheelchair Malfunction – by Ben Mattlin

June 28, 2017

One summer some years ago, my motorized wheelchair abruptly stopped working. The joystick that controlled it simply would not engage. The chair was dead.

It wasn’t the first time this had happened, in my lifetime of wheelchair use. And I knew my latest high-tech miracle of mobility was extremely delicate. Fortunately I was home when the malfunction occurred, but the cause was inexplicable. Some quick checking revealed the problem couldn’t be blamed on a loose plug, bad batteries, flipped circuit breakers, or anything else easy. The glitch was microscopic and random.

Born with spinal muscular atrophy, a neuromuscular weakness similar to muscular dystrophy, I’ve never walked or stood. I moved from a baby stroller to a manual wheelchair when I was about three, then got my first power chair in middle school. By my late-30s, my disability had progressed to the point where I lost total use of my hands. For the past 12 years or so (I’m now in my mid-50s), I’ve controlled my chair with a tiny, ultrasensitive joystick I manipulate with my lips—a godsend for someone like me, even at nearly $3,000.

A godsend, that is, until it breaks.

My personal-care assistant could push me manually, but that’s just not the same. Feeling utterly stuck, I aggressively hounded every wheelchair-repair outlet within a 50 mile radius. (Okay, I “hounded” them with urgent phone calls.) There aren’t many that deal with such high-tech stuff as I use. The establishment where I’d originally bought it—imported from Europe!—had gone out of business. I tracked down some of its technicians, however, who were now with a rival vendor about 75 miles away. The first open appointment was two weeks out. I even e-mailed the European manufacturer. I received a prompt response, but shipping parts back and forth would take weeks if not months, I was told. I was getting nowhere. Literally, actually.

Finally, in desperation, I called a local medical supply dealer I’d visited once before for a simpler repair. I didn’t entirely trust the joint. It had seemed sketchy. It was basically run out of a family garage. But the voice on the other end didn’t say no, so I agreed to come in for an assessment.

It was a hot day, and when my attendant and I drove up in my van to the plain brick building on an industrial street, we opened the windows for ventilation. The establishment looked closed, deserted, abandoned. Its few windows were blacked out from the inside. But then unfamiliar music wafted into the van. There was a radio somewhere on the other side of the graffitied garage gate.

We honked, called out. After a moment, a bearded young man in a gray hoodie and glasses emerged from behind the gate and ushered us in.

Once parked within the gate, I had to be wheeled manually out of the van to explain my problem. The young man listened sympathetically, then started fiddling with my nonfunctioning joystick, removing the mouthpiece and examining it as closely as a jeweler might—or as if he’d never seen anything like it before. I couldn’t be sure which.

He didn’t say another word, and I confess to thinking, “Oh no! He’s going to break it!” before remembering it was already broken.

“One minute, please,” he finally said before disappearing into the garage with my precious component in his hand. Why was I so nervous? When he returned he said he might be able to fix what was undoubtedly a short, though it could take hours of trial and error to find it. I thanked him, said I’d call later that afternoon. Before leaving, I asked the young man’s name. “Mohamed,” he answered.

I’m a white guy. A Jewish white guy, to be specific. I have nothing against anyone from any other background, race, orientation, etc. But it was 2005, not so long after the terrorist attacks of 9/11, and my awareness of Islamophobia was still pretty new. I now recognize it for what it is, but then I wasn’t so tuned in. So I’m ashamed to admit that, for a moment there in that alleyway behind a garage gate on an industrial street, my pulse quickened. This was not the Muhammad Ali type of Mohamed. He was of Mideast descent.

Even then, I quashed my foolish anxieties. This was a mom-and-pop business, nothing more sinister. He was probably a nephew or something. Still, my mobility was in this stranger’s hands. But what else could I do?

I was back in my van when Mohamed suddenly ran up. “Wait! I found some loose connections. May I try to fix it?”

I smiled. He climbed into my van and reattached the piece on the spot. And for a moment, the chair actually worked! The connection was still faulty, but it could be jury-rigged until a replacement could arrive. I was no longer stuck. “It’s miraculous!” I said. “Thank you, Mohamed.”

Mohamed smiled at my pleasure. “Well, it seems God loves you,” he said.

Okay, that startled me. Disabled people are constantly prayed for and blessed by strangers. It grows tiresome. I’ve learned to be leery of uninvited religious overtures. This time, however, I felt so profoundly grateful for being “saved,” as it were, from interminable immobility that I decided not to take offense. “And God loves you, too,” I replied.

Looking back, I think now that this experience was an emblematic example of my particular disability perspective. My well-being is often in the hands of others. I’ve hired personal-care aides from all over the world, learned to communicate the most intimate details of my life to people with a variety of accents and customs. What does it mean, in a practical sense, to live with a disability? For one thing, you have to be persistent about making sure your needs are met—that your equipment works, for instance—but it also pays to be flexible, to have an open mind. Having a disability can throw you into scary, uncharted waters. Yet at the same time it can propel you into new relationships and scenarios that broaden your attitude.

When I returned to Mohamed a few days later to install the replacement part, we had a long chat. I’d like to tell you that we’re still friends today, but it didn’t quite work out that way. He moved on. But I’ve never forgotten his kindness and the insights he gave me into my own prejudices.

Ben Mattlin

Ben Mattlin, a Los Angeles-based freelance writer and frequent contributor to Financial Advisor magazine, is the author of MIRACLE BOY GROWS UP and the upcoming IN SICKNESS AND IN HEALTH. His work has appeared in The New York Times, Los Angeles Times, Washington Post, Chicago Tribune, and USA Today, and has been broadcast on NPR’s “Morning Edition.”

You can find his books for sale by clicking the book title links above.

 

 

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