The Mystique of Disabled Existence

Published: Jul 02, 2020

To able‐bodied people, wheelchair users have a certain mystique. They’re constantly asking us about how our bodies do or don’t work, whether we can have sex, why we haven't just killed ourselves yet. But despite their intrusive questioning, there is one area that ableds seem to be absolutely certain about: the existence of ultra‐convenient readily‐available accessibility modifications and mobility aids.

As wheelchair users, how many times have we been told to “put some chains on that thing!” As we struggle through the snow? How often is it suggested that we get a hand‐bike so that we can cycle to work like our coworkers? If I had a nickel for every time someone suggested I attach some tried‐and‐true motor to my chair, I’d have enough money to pay someone to invent it.

People are constantly sending me links to articles and videos to supposed life‐changing mobility aids that can climb stairs or move over rough terrain. They tell me that things can’t be that difficult with a constant stream of new, convenient doo‐dads being put out in the world. Hell, when discussing how difficult it is to find a single‐story home in Seattle (existing or custom), the suggestion was made that I simply build a multi‐story home but also put an elevator in.

Here’s the thing though: has anyone, wheelchair‐user or otherwise, actually seen any of these so‐called solutions in person? The stair‐climbing wheelchair? The magical snow tires? The super fast motor? I haven’t. As for the elevators and hand bikes, I can count the number I’ve seen on one hand and I’d need way more fingers and toes to show you the price tag.

Despite their near non‐existence or insurmountable financial cost, people keep telling me I just need to “get me one of those…” and continue to cast my existence and the problems that come with it in a mythical light.

An elevator for your house starts at around six‐thousand dollars. If you want one that doesn’t look like the rickety stair‐lift at your local Eagle’s Club, it’ll cost you upwards of sixty‐thousand.

The price of an average, entry‐level bike is four‐hundred bucks. If you want an accessible hand bike, you’re going to start around a grand.

Custom wheelchair tires can vary anywhere from two to five thousand, often times costing more than the chair they’re attached to.

That stair climbing chair? Eleven grand. Want something that’s a little more “every day”? That’ll cost you seventeen grand. Just need a motor for your day chair? Six grand and it weighs fifteen pounds.

Now, some folks might be thinking “sure, it’s expensive now, but the price will come down as technology improves and more people buy these devices”. But with an employment rate of roughly 7 percent (before COVID) and rules governing the amount of money disabled people on SSI can have in the bank (no more than two-thousand dollars), most wheelchair users can’t even save up to buy one of these devices. And no, insurance won’t cover any it.

A lack of accessibility is not something we can just “tech” our way out of and disabled people should not expected to purchase access to a world that everyone else gets for free. Talking about mobility aids you’ve never used or seen when someone is trying to explain to you the barriers they face in their day to day life due to a lack of accessibility isn’t helpful, it’s dismissive. Quit doing it.