Life with a complex disability, like SMA, is obviously challenging. Your brain always has to be 2 or 3 steps ahead in order to anticipate challenges that the inaccessible world loves to throw at you. It’s like playing an endless game of Whack-A-Mole at Chuck E. Cheese. You know those little heads are going to pop up somewhere. So, all you can do is keep slamming the mallet down on the board hoping you earn enough tickets to buy a Slinky at the counter.

As I’ve discussed before, my custom power wheelchair is a big part of this effort. It’s the object that makes my life— my independence— possible. At the beginning of this year, I began the arduous process of getting a new wheelchair. Insurance requires that many steps be completed before an order can even be processed— and all of it must be done sequentially. Like a really complicated, and really French, pastry recipe. The kind that takes hours to make, you eat in two bites, and leaves you hungry afterward.

I have a Type A personality. I like to get stuff done. This trait has come in handy because such attention-to-detail is why I’m still alive and thriving 35 years after most doctors thought I would be dead.

But, this ‘wheelchair vortex of hell’ doesn’t always reward such preparedness. Because, no matter how on top of things I am, I am still at the mercy of a large medical bureaucracy. The bureaucracy lets unsigned forms sit on desks. The bureaucracy denies claims because one date is mistyped. The bureaucracy doesn’t pick their own nose without a memo telling them which finger to use.

Just a few weeks ago, insurance finally authorized my request for my new wheelchair. This was after several paperwork delays that literally made me scream. But, with this authorization, the DME (durable medical equipment) company was then able to place the order with the manufacturers.

You’d think I’d be ecstatic. You’d think I’d be over-the-moon with happiness… you know, just like R. Kelly is in a room of underage girls.

But, I was not. For I knew that my current wheelchair had to survive until the new chair arrived— because insurance would not authorize repairs to an existing wheelchair while a new wheelchair is being ordered. So, I would be majorly screwed if my current wheelchair took a crap in the meantime. Therefore, each bureaucratic delay increased the probability of this happening.

And, last week, the laws of probability finally caught up with me. A motor fault brought my wheelchair to a halt.

Needing to have a functioning wheelchair, I had to do a painful thing. I asked the DME company to order a new set of motors. The DME company understands my pain and kindly agreed to give me a cut rate, but it’s still more money than most people pay for their first crappy car.

To be honest, I actually cried. I sat and cried because I was going to have to find a thousand dollars to fix a device that allows me to live. It’s demoralizing. And it makes me feel very, very small. In an inaccessible world— a world where I have to be smarter, wittier, and more prepared than everyone else— I still have to scramble for this most basic thing.

I applied, and received, a disability grant to help me pay for some of my replacement motors— and I set up a GoFundMe to cover the remainder of the cost. The sad thing is, I shouldn’t have to do any of these things. Wheelchairs are a life-sustaining medical necessity and they need to be categorized as such by Medicare and other insurances. Too many disabled people like me face these exact hardships. Unfortunately, some are forced to stay in bed for days/weeks (putting their health and safety at risk) in order to wait to find the money to pay a bill that their insurance should be covering. It’s a story that happens too often.

No one should have to GoFundMe for a wheelchair. No one should have to peddle to others for something like this. Yet, we are forced to do it every day— in some form or another. It’s so Dickensian. So 200-years-ago. Yet, nonetheless, here I was, like little Oliver Twist, holding out my small pail—

“Please, Sir, I want some more.”

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