I’m at a corner at the start of a quick run for groceries. The opposite light turns red and several cars, a van and a large firetruck stop in front of the crosswalk and I start to move across the street. Halfway – exactly halfway – the chair stops. Not the “clunk, one motor stops, I spin around in a circle” that has happened before. No, stop. Dead. Both motors. No clunk. I push the joystick, heart hammering like a piston. Nothing. I lean forward to look at the display – it’s on, in speed 4, no error message. I turn the chair off, noticing the distinct shake in my hand, aware that the countdown to red has started, that several cars, a van and a large firetruck are preparing to go. That I am seriously in the way. I turn the chair back on, it beeps, I push the joystick and…. it moves. I start breathing again, chanting justgetmeacrossjustgetmeacrossjustgetmeacross and miracle of miracles, it does. I sit on the sidewalk. Tremble for a while. Start weighing options – limp home immediately and call for the repair guy or finish shopping, risking not having any dinner if it’s a while before he gets here? I decide the latter and chant my chair through the grocery store (pleasegetmehomepleasegetmehomepleasegetmehome), get home, Dave the Wonder Repair Guy arrives and checks the error messages. According to the manual, it’s essentially a hiccup in the controller. Normal, what with all the electronics in there. If it happens again, maybe it means I need a new controller. Wait and see.
Now, before I get started on the ranting, let me make it perfectly clear that I am not in any way blaming Dave, The Wonder Repair Guy, who is divinely talented when it comes to repairs, nor am I blaming the vendor who sold it to me. Nor, come to think of it, am I excessively blaming the manufacturer for releasing a model/generation of controller that still has bugs (said manufacturer not being alone in having the 'oops' factor create problems after release of a new model/generation of wheelchairs).
But here’s the thing: after I'd stopped shaking - which took about an hour - I got to thinking. When all was said and done in the sales process, my portion of the cost of this new wheelchair exceeded $10,000. Not surprisingly, this money materialized courtesy of VISA. I wouldn’t mind so much having a crushing debt load that will take me decades, maybe a lifetime, to repay, if only said new wheelchair would act like a new wheelchair. And that's when some part of my brain implemented the sound of screeching brakes. Excuse me?! Over 10k for something that randomly spins out of control or stops? Imagine this was a car – not exactly the same thing, as my chair’s more like my legs, but since it's certainly cost as much as a car, we’ll stay with the image. Imagine a new model of car being released that randomly spins around or stops in the middle of driving somewhere. Would the owners of the car be told that it was "just a hiccup, it's to be expected, what with all the complicated electronics in there", to keep using the vehicle? How long do you think it would take the manufacturer to a) recall the car/part; b) ensure that all customers had a functioning automobile; and c) it being splashed all over the news and be a major public relations nightmare for aforementioned manufacturer?
So why isn't that happening when it's a wheelchair? I'll tell you why. It's because people with disabilities are rampantly un- and underemployed - the last estimate I heard was somewhere around 80%. It's because people with disabilities do not receive adequate social assistance, making them unable to not only pay for the "normal" things like rent and food, but making it utterly impossible to afford the many additional expenses associated with disability. It's because people with disabilities have no money that they have no voice and no power. This is why any initiatives done for people with disabilities have the stench of being charity for the poor cripples. Something to make everyone feel really good about themselves. This is why there is no employment equity legislation mandating that employers be accessible, both in terms of the physical structure and employment systems. It's why nothing is being done about, e.g., WheelTrans being an unholy mess that more often than not is anywhere from 30 to 90 minutes late (more here - link added late due to Monday morning brain). Parallel transit system? My arse! What employer will hire you if you cannot be guaranteed to get to work anywhere close to on time? If you manage to get a job, it is usually one that not commensurate with your abilities, because the education system is so inaccessible that an alarming amount of people with disabilities are not educated to their full potential. Leading to no money and no power and no voice. It's why we don't matter, except to be shoved in a human interest story at the end of the news, featuring either the Horribly Tragic Cripple, the Oh, How Inspiring, Look at the Cripple Overcoming Vast Obstacles or Look How My Contributions to Charity Help the Poor Cripple. And I am sick to death of it.
I am sick to the point of puking of having to ask nicely. I am sick of it being my responsibility to make others feel comfortable in my presence. I am sick of having no money because any money I do have go to paying for things like my wheelchair, miscellaneous supplies, over-the-counter drugs, drugs that aren't covered, repairs to my wheelchair and numerous others of a myriad and varied list of expenses that I only have because I have a disability. I am sick of having to call ahead anytime I want to go out to make sure the place is accessible. I am sick of the fact that most places aren't. I am sick of places that are accessible not actually being so (hint: that button for the automatic door opener? Doesn’t help if it’s up high, placed so the door slams into my chair when it opens or not turned on). I am sick of people like me being mutilated and killed for the convenience of others. I am sick of living in a world that refuses me access to education, to employment, to recreation, to influence in my community, to influence in my government. I am sick of being disabled, not by arthritis, but by the barriers in the society that my taxes support.
I am sick of being negligible. I am sick of being irrelevant.
I am sick of being Other.