In Defense of Cybernetics

If you’re a member of the SMA News Today Forums, you might know that I trialed the JACO robotic arm a few months ago. When I heard that Numotion was servicing my area of the U.S., I decided to give it a shot. Why not, right? I’m already a cyborg — I may as well go all in and get a cybernetic arm.

My claim was denied. Numotion is appealing the decision, and we’re still waiting to hear back from Medicaid, so the fight is far from over. But arguing in favor of a “medically unnecessary convenience/self-help item” got me thinking about society’s definition of “medically necessary,” and how the definition changes depending on social location, among other privileges.

It’s easy for insurance providers to look at cybernetics, including the JACO robotic arm, and see a far-off, cyberpunk future. But for folks with disabilities, cybernetics are just as life-altering as treatments and medications.

There’s a chance that Evyrsdi (risdiplam) will alter the progression of my disease. But there’s no guarantee.

JACO has the potential to drastically change my life — for the better.

I argued in my appeal that no able-bodied person would dare to claim their limbs as convenient. But that’s exactly what able-bodied folks are implying when they deem cybernetics “medically unnecessary.” If I were healthy, my limbs would have inherent worth. No one would expect me to live without arms or legs. No one would expect me to survive a paralyzing accident and be content with one functioning arm, not when options are available to me. How could they?

But the wheelchair changes things. And that’s what able-bodied folks don’t understand. It’s a failure of empathy on their part — they can’t imagine the restrictions associated with upper mobility limitations. I can spend the next decade arguing in favor of brushing my teeth, or scratching an itch, or opening a door to escape a burning building, but it won’t penetrate the years of able-bodied privilege that separate the healthy from the ill.

I’ve spent 25 years stuck in a body that hates me. And I’m used to it. I thrive in spite of it. So able-bodied folks look at me and shrug, because I’ve survived up until now. But able-bodied folks don’t know the fear and exhaustion and weighty sadness that comprises “survival.”

They don’t see me in the hospital at 4 a.m., fighting for every breath, pale and shivery and severely dehydrated. They don’t see me panicking on the side of the road, because I hit a bump and knocked my phone off and how am I supposed to call for help when I’m stranded and helpless? They don’t see me flinching at every stroke of lightning, every clap of thunder, because if something were to happen — if one of the trees in our backyard fell — that would be it. Game over.

So let’s try a thought experiment. If you’re able-bodied, I want you to pretend that you are wheelchair-bound for a week. (I don’t normally use the term “wheelchair-bound,” but in this scenario, it is absolutely the correct term. You are bound to that wheelchair for the extent of this experiment.) You can’t turn your head. You have some control of your hands, but you can’t move your arms. You are completely dependent on those around you for activities of daily living. You know how your body is supposed to work — you’ve watched people with healthy bodies go about their normal lives for 25 years. But it won’t comply.

Think of everything you do on a regular basis to keep your mind and body healthy. You hydrate. You exercise. You eat well. Now imagine that 95 percent of your daily activities are no longer available to you.

Thirsty? Ask whoever is available to get you a glass of water. Watch them sigh and shift impatiently as they hold the straw to your mouth while you gulp down as much as you can.

Sore? Sorry, you’re out of luck.

Hungry for your favorite food? You probably can’t chew it. If, by some miracle, you’re able to get it down without choking and aspirating, it’s probably diced so small that you’ve lucked out on anything close to flavor.

Live that way for a week. Feel your body waste away. Feel your spirit give in, little by little, until you’re worn out, defeated, a shadow of who you once were. Recall that mental wellbeing, particularly a sense of independence, greatly influences physical health. Remember that hundreds of thousands of disabled folks are denied durable medical equipment devices because able-bodied people with no experience with physical limitations deem them “medically unnecessary.”

Then try some empathy.

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.