Mobility Empathy

By Mark E. Smith

I asked a buddy of mine how he like his accessible van dealer, and he gave me an unforgettable answer: “They remind me of my wheelchair dealer. Every time I go to either one, even though they’re surrounded by equipment needing immediate service, it’s like they’re just sitting around playing cards on a Tuesday afternoon.”

While there are many terrific mobility providers, my buddy is on to a reality about some providers that runs deeper than most realize. After all, one would think that with wheelchairs so critical to consumers’ lives, providers would scramble to get each job done as quickly as possible. So, then why do some providers seem so sluggish – that is, seemingly playing cards on a Tuesday afternoon while you’re stuck in bed waiting for your wheelchair?

For those types of providers, the answer is quite blunt: They simply don’t recognize the critical role of wheelchairs in our lives. See, I don’t think that sluggish providers merely lack professionalism. Rather, I believe that sluggish providers lack a far more crucial trait: Empathy.

As one who’s used a wheelchair my entirely life, nothing has proven more alarming to me than when my wheelchair has failed – that is, whenever it wouldn’t turn on, or an error code appeared, or the batteries suddenly died. The realization that my life had just come to a halt, that I was entirely helpless, and that my independence was gone always ushered in my most disconcerting emotions. For those who don’t have a disability, I explain the feeling of a suddenly-dead wheelchair as like that of being in the middle of a Nevada desert, countless miles from a town, on an unpopulated road, in 110-degree heat, with no cell phone, and your car simply dies in its tracks – now what do you do?

I didn’t grow-up in the greatest of families, where I experienced and dealt with some very harrowing experiences. But, none ever placed the sick feeling in my stomach like when my wheelchair simply stopped working. Why is it that I could handle a volatile home life with seeming nerves of steel, but the minute that my wheelchair wouldn’t turn on, my heart raced and I felt alarmed?

Because the entirety of my life has depended upon my mobility – it’s that simple. Even as an adolescent, I knew that as long as I could move via my wheelchair, I could handle anything. If Mom was having one of “those kinds of nights,” I could roll to the phone and call for help. If I needed to get to the store to buy my little sister and me food, I could do it. And, most importantly, I could get myself to high school each morning, no matter what went on at home. As long as my power wheelchair worked, I had control in my life.

However, the minute that my wheelchair died, I was helpless and vulnerable. My sense of control was gone, all abilities lost. I felt my pulse quicken, the blood seemingly rush from my head, thinking to myself, Please, Lord, not now….

And, I can never forget that feeling, never shake it. I can’t help but wonder, then, if the career path that I chose in working with mobility products – and, more importantly, toward serving my fellow users – had something to do with my subconsciously wishing to control the one aspect of my life that I never felt completely in control of: My mobility?

Of course it did. In fact, in not only wanting to avoid feeling that raw pit in my stomach for myself by preventing my own mobility issues, I’ve built a life that strives toward ideally helping others avoid that feeling. I take it personally when I learn of anyone, anywhere, with any wheelchair that has an issue. In fact, the pit in my stomach is rawer than ever, where I feel my gut wrench every time I see a message board post, receive an email, or get a phone call that someone’s wheelchair isn’t working, where I recognize that one’s life may have just come to a screeching halt without mobility – and it resonates within me, where I just want to help. I suppose that my experience is a lot like the fact that recovered drug addicts make the best recovery counselors because they see themselves in their clients, knowing their struggles first hand, with absolute empathy for what others are experiencing.

And, that’s what I think some providers lack – that is, the empathetic reaction to mobility issues that’s needed to truly pour oneself into one’s work. Sure, some providers are terrific, while others are downright terrible. But, there are some in-between who aren’t bad people, they just don’t get it – they don’t recognize that one’s life can come to a halt when one’s wheelchair isn’t working – and it hurts their business and harms consumers.

What can a consumer do, though, to help a provider have some semblance of empathy? In my experience, simply trying to make a real connection with such providers – saying, I’m going to be stuck in bed until you get my chair fixed. I’m sure you can imagine what it would be like to be stuck in bed for a week, so I trust you’ll do whatever you can to get my chair back to me in a day or two… – is worth a try. Providers don’t always register the importance of a wheelchair in one’s life, but sometimes when we sincerely, patiently try to explain it to them, it works wonders.

No, one doesn’t have to have a disability or first-hand knowledge of what it’s like to be stranded by a dead wheelchair to be a great provider. However, having empathy – as in realizing how one would feel if stranded in the Nevada desert by a broken-down car – certainly wouldn’t hurt. See, empathy doesn’t have to come from an identical experience; rather, empathy comes from simply appreciating the plight of others, and sincerely striving to be of assistance.


Author: Mark E. Smith

The literary side of the WheelchairJunkie

6 thoughts on “Mobility Empathy”

  1. Mark,

    I really enjoy reading your postings!

    My wife and I gave birth to our baby girl, Annabelle, in August. She has level T5 spina bifida and has not moved her legs up to this point.

    I want her to be independently mobile at the same time and to the same degree as typical children (ie; when they learn to stand / walk etc.) but I have not had much luck in finding infant / toddler mobility equipment.

    Can you point me in the direction of “first wheels” so-to-speak for children?

    Thank you for your insightful blogging and thank you for your help.



  2. Most simply can’t relate to how bad being stuck in bed for a week is. They’re thinking, “Oh, I’d LOVE to lay around for a week, and not have to get out of bed!” When they “lay around for a week,” they’re not actually STUCK there, completely dependent on everyone else for every little thing.
    The desert analogy is the better one…

  3. Mark, I am not 100 % wheelchair bound yet, I can still get up and take a few steps with a walker. But I experienced parallel feelings of helplessness when I got stuck in 30 degree weather in our outdoor porchlift. The painful lesson I learned is not to go to pick up my mail without my cellphone. Luckily help came within
    30 minutes at which point I felt like an ice pick!

  4. Great article, Mark, and right on the money. In my own experience, with one exception (a small local provider) the wheelchair repair services don’t seem to have any real consideration for us customers. I constantly encounter people who don’t give a second thought to saying things like “well we can’t come around until next Friday to have a look” or,“ it will take two weeks for the parts to come in from Fresno”. It pretty much seems to be business as usual: make the insurance company happy, get the money in, pay the salaries. Unfortunately, standard business attitude in much of the country.

  5. Mark we get alot of that sluggish attitude with Pediatric dealers, there are only two in our area and we improvise alot until they get around to doing a simple seat adjustment with foam. I sometimes they think of our daughter as just another job instead of a whole person who is uncomfortable or in pain due to her position in the chair.

  6. Thank you for writing this article. It *really* hit home for me.

    I have a caring provider, but my Q-6000 was originally due in something like July of 200*7* (though I wasn’t able to finish paying for the co-pay and upgraded motors ’til October 2007). It was delivered with its Motion Concepts tilt seating when I was able to pay for the speed upgrade in October of 2007. First off it arrived without the transit tie-downs I was promised, nor the attachments for my crutches (though the provider of their own kindness did jerry-rig something for my crutches with a loop of velcro and a piece of plastic). It got less than 2 miles per charge. I complained and was first told the batteries needed to burn in. Then I was told the batteries were bad. Then the provider replaced the batteries, and then took the chair back and (after about three battery replacements and after finally confirming that yes, the chair had only EVER gotten less than two miles per charge) proceeded to replace every single electrical component they could reach. The chair was returned to Pride, who advised that the batteries were bad (though of course they weren’t, and had been tested and replaced numerous times). I wasn’t given a loaner electric chair until August or September of 2008, and so was in my manual from 2007 when the chair was supposed to be delivered, until then. The loaner I was given, is an Invacare and while it is perfectly functional and infinitely better than my manual, it is still not nearly as good as the chair that I had ordered (which had the speed upgrade, etc.) My insurance company paid for the chair, but I’d paid out of pocket for the upgraded motors and controller, and for the tray table for my computer for work (which also never worked with the chair, turning out to be incompatible with the armrest), etc. The provider conferred with both Pride and Motion Concepts, and each said the other was at fault for the charging problem (though the two were supposed to be compatible). This went on for literally over a year. It was only this April 2009 (please note I’d been complaining since 2007, and the chair had *never* worked) that they finally got both Pride and Motion Concepts on a conference call (I don’t know if the delay was the responsibility of the provider or of one or both of the vendors). At this point, it is now the end of May 2009 and the latest word from the provider is that they’re going to install a separate controller (I don’t know if also a separate charger) for the tilt/recline functionality, which removes one of the cool features of the upgraded electronics I’d purchased, and adds another device to one of my armrests (which will add something else to be careful of in bus and air transit etc.). I also have no idea when it will be ready, but the chair was originally paid for by October of 2007 and this is May of 2009 and I still don’t have a working chair.

    The people at the provider have been caring and kind, and the repair team seems legitimately knowledgeable and dedicated to helping me — I honestly believe that my chair came up with a strange and unusual problem — but at what point over fifteen to seventeen months would it have been reasonable to have expected to have had a chair that met the specs I’d paid for instead of a loaner that goes about half as fast, barely makes it up my ramp incline, etc? It honestly does seem a little bit of an excessively long wait.

    In another industry, I would’ve expected the provider to have provided me with a different one if the original didn’t work, long before this much time had passed, loaner or no loaner.

    But again, they’ve been friendly and caring when I’ve called for status – it’s just that I still don’t have my chair. It was never delivered in working condition in the first place.

    Okay, wrong place for this rant. Just that your article really brought this to the surface for me.

    I struggled in my manual chair for almost a year with NO electric chair (which caused me a great deal of pain and some trouble at work due to exhaustion and therefore diminished productivity and more frequent illness), because they weren’t able to locate a loaner with the seating that they felt I required (special positioning, tilt, etc) — they thought it better to leave me in my manual than to lend me a sub-standard electric ( ! ). Trust me, I’d’ve rather had a van seat than stayed in my manual (!). Then the electric they leant me — I’m very very grateful to have it, it’s given me my *life* back, but it’s not what I’d paid for, and it for example isn’t able to just run to the store, it’s able to take me to a bus that goes to the store. So that works, but it’s not the same level of freedom. Don’t get me wrong, I’m still very grateful to have it.
    Okay, I’m not making sense anymore, sorry.
    Thanks. ~Entropy~

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