Disability Manifesto

I promised myself when I started this blog that I wouldn’t make it about disability. At the same time though, I promised myself that I would use this site to say the things that I wanted to say. So, even though I haven’t written much of anything here yet, I wanted to write this. I wanted to say this because if I never write another word in this blog again I want these words out there. I want Google to rip them from this site and carry them to the four corners of the web. If you hear nothing else I ever say, then I still need you to hear this.

Today, for one moment, I wished I wasn’t disabled. You have to understand that in 35 years, this is the first time I can ever, ever recall having that thought and the moment I had it I was so incredibly pissed that circumstances had actually driven me to the point that I would think it.

My wheelchair is dying. In wheelchair terms it feels like a mere babe–18 months old in a lifespan that should last anywhere between five to ten years. The gearboxes in both motors are failing and, after spending the morning in the waiting room of the wheelchair repair shop, I was told that they couldn’t be saved.

Now, I love my chair. I’ve loved all my wheelchairs. The one I’ve got now is the fifth power wheelchair I’ve had since I got my first one when I was six years old. According to the odometer on this chair I’ve put over 5100km on it since I got it. You put in that much mileage with anything you own, I guarantee you form a bond with it. And, of course, when that thing you own is all that separates you from independence and being barely mobile lump on the floor, the health and welfare of this inanimate object starts to become the centre of your world. Most people miss that when they see the chair. They see it as a prison. The common expression is of being “wheelchair bound”.

I, however, have only ever seen it as freedom.

So, imagine my shock and frustration today when I was told I might have to pay $8000 to heal my dying wheelchair. The gearboxes are three days out of warranty. The repair shop believes that they can convince the wheelchair company that, since the problem was reported prior to the expiry that it should be covered within the warranty. However, even the possibility that I might have to pay that enormous sum of money shook me to the core.

I’m self employed. I have no medical benefits that cover wheelchair repairs. Of course I budget for the basic maintenance on the chair like new tires and a new battery, but nothing like this. In fact, I had been banking on the fact that this was a nearly new chair when I started my business last year. I would have time to build up my client base and my income before I needed to be seriously concerned about parts on the wheelchair failing.

And so there I was… lying on the couch tonight, staring at my beloved crippled wheelchair and thinking about what disability was going to cost me. And here’s the thing… I can live with being short and somewhat ill-formed. I can live with the potential of broken bones and pain. Hell, I can even get through the stares and the stupid comments that random strangers make when I’m making my way through the world. All of that I can deal with and have dealt with a hundred times over.

What I can’t deal with is when I feel like I’m being stripped of my choices.

How am I supposed to live my life and strive to be the person that I believe I can be, when I am I tied to the financial burden of this wheelchair? Note that I say financial burden of the chair and not the actual chair itself. The chair is freedom. Potentially having to clean out my savings to keep that freedom… that is what will keep me up at night.

Because really, what are my options? What are the options of any person with a disability who has expensive medical equipment that has to be serviced?

Option 1: Don’t work. No seriously. Don’t get educated. Don’t try for employment. If you live on disability benefits (aka welfare) for the rest of your life, then there will always be a government agency to pick up the tab for your chair. It probably won’t be the best chair. It probably won’t have those little extras that take you from surviving to actually living, but hey… at least you’ll always have a set of wheels under you even if it takes two weeks to get permission from the government to repair anything above $250. Oh yes, and you get to live in poverty for the rest of your life. Lucky you.

Option 2: Work, but you can only work at particular companies that have a particular set of benefits. That cool start up with the cool ideas that wants to hire you? Bad idea. Don’t work from them. They don’t have medical or they have such wimpy medical benefits that their insurance company shrieks in terror at your wheeled approach. You aren’t someone that might need benefits at some point, you are guaranteed to need them and need a lot of them. So you have to go work for some big company or organization or government–somewhere that has enough people that your repeated claims for new tires, new batteries or hey, an entire new wheelchair (only $26,000), are just a drop in a very, very large bucket. Have no interest in working for a big company, organization or government? Too fucking bad. Aspiring to a career path that’s more likely to make you a perpetual contractor as opposed to a permanent employee? Ditch it. You didn’t really want to be that kind of working artist, did you…?

Option 3: Become self-employed! Yes, by working for yourself you can set a schedule that best accommodates any pesky personal medical needs that come up. For instance, bad back day? Crash on the couch with a heating pad for a couple hours and then pull a late shift. Not a problem and your clients will never know the difference. Oh yes, and you’ll generally make more money when you are contract which means that, again, you can choose the hours you work and the hours you put in for some medically beneficial exercise time or pursue other personal goals that are important to you.

OH WAIT NO… if you’re self-employed, you’ve got no medical coverage! In fact, if you go to organizations that would ordinarily offer medical coverage to budding entrepreneurs, they won’t take you because you’ve got a permanent disability.

Anyone else sensing a theme here?

I read something years and years ago that has become my grounding principle in understanding my disability. It is the hinge-pin to my personal manifesto.

It is not my medical condition that disables me, it is how society treats me that disables me.

We gain strength through the power of choice. What we choose makes us who we are and right now I feel my choices are being severely limited due to forces beyond my control. This isn’t like choosing whether or not to buy a car or a bicycle. This isn’t about choosing whether to rent your home or to buy. I have to have this very expensive piece of technology in order to function at all, but in order to have it society requires that I must build my whole life around what’s required to finance it. 

How is that right? I shouldn’t have to choose my career path based on paying for my wheelchair. I’ve worked my ass off for years to get where I am right now. I have a home I own. I have a business I’m building. I have goals and aspirations that I damn well want to fulfill during my time here on this earth. This is my fucking life and when I think about it being taken out at the knees by this of all things.

No. I won’t allow it. I will not allow society to take all that anger and frustration and turn it back on myself. I didn’t do this. My body didn’t do this. My mutated genes and fancy medical condition didn’t do this. There is nothing wrong with me and everything wrong with a system that would make me, even for a fraction of a second, want to wish away a fundamental part of who I am.

I don’t have any answers tonight. Neither Option 1 or Option 2 have any great appeal to me, certainly not after the time and effort I’ve put in to building the life I have right now. Still, the wheelchair will have to be serviced and, according to the repair guys I spoke with today, the imported lower quality parts that the wheelchair companies have been putting into these chairs of late will likely need to be serviced more often than I had originally banked on.

Something will have to change… I just don’t want it to be me.