I have been thinking about disability, specifically about risk and my disability identity. I have been accused of being the “inspirational crip,” accused of intentionally trying to be one. And in asking, “Why would anyone think that?” I realized it was not that I had changed my personality once I was in the wheelchair, but rather because I had not. Having a “Who says I can’t do that?” attitude in North America is not uncommon (I think it gets you citizenship for Texas), but is the very aspect which the “plucky crip” news stories always talk about, and thus is the one of the few depictions of disability. And maybe because this is one of the limited ways journalist think the population can relate to having a disability, they paint a “pull yourself up by your bootstraps” as if disability/impairment were like being an immigrant or poverty, and you can somehow “move up” with hard work.
To be completely honest, I have always lived my life so as to be inspirational: I sure the fuck didn’t make and live through all those hard decisions instead of easy ones to get the “big reward”. First off, I’m a Christian who doesn’t believe in heaven. I chose Christianity (non-corporate) because I believe that to be truthful and honest, to try to care after years and years of disappointment, to love others who have hurt you is impossibly difficult (ergo: something I would be interested in doing). To be brutally honest, the person I need most to inspire by my life….is me. I need to know, that as oft as I failed and gave in to my flaws, I spent at least one time more overcoming them (or trying). For me, finishing a marathon isn’t as important as the hundreds of hours of training and the thousands of times, including during a race that my body has begged me to give in, to give up. To make hard and scary decisions in a time when you are afraid, tired and in pain? That’s inspirational isn’t it?
When I was going though my “mid disability crisis” a.k.a. “What to do when I return from Japan?”, Dawn Allenbach told me to: follow your dream and leave your comfort zone (hers moved her 1,000 miles to New Orleans). Which is probably the shortest “cut the shit” phrase I needed. Because disability is about being vulnerable, being limited, knowing you are limited and that much of your life or needs are without flexibility. Because if you need a drug to keep functioning, or an aide to eat or shower or shit, then there isn’t a lot of “whatever!” Risk comes with big consequences. And yet, her advice was: Choose Risk.
Wheelchair Dancer was talking about moving from someone who “uses a wheelchair” to someone who has an identity of a person with a disability. And that’s true, because while I said, when I started using the chair, “This is it, this is where you are.” Well that’s never really true and a year on, I think I do have a disability identity (but then again, ask me in a year) simply because the speed of my dependency, the stripping of control over body and life and the pervasive aspect of my disabilities to my life. This is not to say I didn’t have disabilities before this, it is just I was really good at “passing” and having my public face and my home face which left Linda to support this façade.
And maybe this is just a sign of my “able bodied” thinking but I want to take risk, I want to live dangerously. I am tired too of being a joke. I’m not a joke, even though from the comments on Youtube to my videos of boxing and badminton, evidently to “some” people (almost all males by the way) I am. That seeing me working hard on boxing or playing one on one with an able bodied person in badminton is so funny they comment that they can’t stop laughing or that the able body person should tip me out of my chair or other nifty (and hurtful) comments. Now, did I do those things to impress a bunch of people who watch videos on YouTube? No. But, I think making fun of ANYONE who is trying hard and having good time is tasteless; it is the EASY choice. Because then you don’t have to spend an iota of time thinking about what it might have taken a person to spend that energy (this isn’t about disability but anyone who does anything), to take THAT RISK.
Children choose risk, all the time! I always think the major difference between a child and an adult is that we KNOW exactly how much it is going to hurt if we fall out of that tree (and compound fractures can’t be kissed better). And quite frankly, when stopped being confused by the day to day medical confusion and exhaustion, I remember myself. And in remembering I choose risk, knowing fully the consequences. I guess it took Dawn and Wheelchair Dancer as well as a whole bunch of people with disabilities who use “inspirational” as a bad word to remind me who I am.
Today, after I did so much work that even I thought I was stupid and overdoing it, I remembered I needed to return a DVD. Oh, did my body tell me how much smarter climbing into bed and “leaving it to Linda” was than doing the 30 minute round trip to the video store (remember when it used to be 11 minute round trip? Yeah, in the wheelchair). So I put on my mp3 player and wheeled to the bass beat and every person I met with a smile and I said “Hi” back and then when they were gone it was back to push, push while I said under my breath, “fuck, fuck, fuck, fuck..” Cause it hurt....a LOT. And since these people walking by didn’t force me at gunpoint to return a DVD, why should I dump my shit on them? I mean, I chose this: so, smile, smile and then do what needs to be done to get the job done (which is a lot of swearing). That was DOWNHILL. Uphill was a lot of checking for people and then laying down my head on my knees but not TOO long in case someone calls 911 (learned that lesson the hard way). Now, thirty minutes of pain and an evening of just a BIT more agony to return a DVD? Is that “inspirational?” Didn’t think so. See, most people when they look closely at what I do, think other words: stupid, slow learner, self destructive. But, I made a choice which said, “You took it out, you return it, cause Linda has been doing a LOT for you lately.” The hard choice.
So as I rolled today, muttering swear words and laying down my head I decided that when I come back, I am going to try and do another 5K in my wheelchair. See, that’s how I think: Wow, these Five blocks each way are REALLY hard.....I should do a 5K. Do I know that whether I finish the 5K or not I will have to be carried off? Of course! Do I do it because it is “inspirational?” OF COURSE! Because I NEED something, something a little stupid and a lot crazy for all those long nights and those seconds and minutes when I will start, for the first time in months, going out and wheeling every day, even if it is for a couple blocks. Because it will hurt, it will hurt a lot and I will pay and pay and I need someone to inspire me to keep going, even though rolling a couple blocks a day isn’t going to inspire anyone else: I need it to keep going. I need to know that I won’t give in, or let down that idealized part of me, which when no one else does, believes in ME. I needed someone who believed in me, and would never quit believing in me and because I didn't have anyone, I created them: me. And I don’t know if that viewpoint is someone who is “just using a wheelchair” or a disability identity or that maybe I am half crazy.
And then, once I get back, I’m going to talk to the person downstairs and then.....I’m going to practice the double bass. I thought of it as I pulled myself into bed back from returning the DVD. And how I am going to play from the wheelchair…..don’t know. I guess in the same way I knew that going to Japan in a wheelchair is REALLY, REALLY hard; I expect like Japan, I will find a way. And so I started to laugh a little (don’t laugh a lot when you are tired with respiratory problems = coughing), as I lay there, waiting to sleep as I thought of going somewhere, and showing up in the chair and then Linda carrying in the double bass. The faces I saw in my (mental) crowd didn’t look inspired: they looked shocked, or uncomfortable, or a little disgusted. Now THAT inspires me. I can’t tell if that vision of “Na Na! You can’t stop me even if I am disabled!” is my disability identity or just my perverse personality.
I never stopped trying to push my limits when I was able bodied. And now...believe me, I have no illusions on the many, many limitations upon me. But when people used to say things were impossible I used to say, “I will find a WAY.” And one thing about being disabled is that I have found a lot of “ways.” Yes, when I lose limb control I open things with my teeth, I am hot stuff with my teeth and zippers. I use my head to pound on the wall to call for help. When I can’t move my head, I try to find SOME body part to tap. I never forget that I am disabled, that I am unable to compete with the able bodied people, that I am dependant but, to use another phrase from former life, “I’m not dead yet.” Which meant, “Unless YOU are planning to kill me to stop me, I will apply all my mind and what resources I have to figure out how to do this ‘impossible’ thing.”
Which, means, the thing which will get me out of the hospital/bed after returning from Japan the quickest is deciding that, “Yeah, why not do a 5K race on May 1st?” That’s how I live and how I get through the pain. And that’s what I blog about. And if you find that inspirational, I’m GLAD, I have no regrets because I DO, it is simply by setting goals that inspire me that I “find my passion” or get the dirty deeds done.
3 hours ago