Friday, March 07, 2008

Risk and Inspiration: my disability identity

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 fa├žade.

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.


cheryl g. said...

Well yeah, why not go for the 5K? I'll come over and wait at the finish line with O2 and coldpacks. I totally get the choosing risk thing. It has played a big part in my various broken bones and traumatic injuries over the years.

To practice double bass, would sitting on the walker seat be better than in the chair? I'm not sure of the mechanics since the only instrument I still play (and not well) is the harmonica.

Lene Andersen said...

we all find ways of challenging ourselves, whether we are able-bodied or have a disability. I'm sure there are many things that I do that others could call stupid or reckless - hell, that I myself call stupid (it's taken six weeks to heal from my latest stupidity). I think it is human to challenge yourself, to push your boundaries. Risk is relative to your situation - I'm not going to do a 5K, but I am going to take risks in other ways. I'm going to live my life like everybody does, push myself and take risks like everybody does, but how I choose to express that might look different because I have a disability. Or maybe it won't.

Hmm. Now I have to go think again. Must you make my brain hurt so?

Gaina said...

Don't pay attention to a damn thing ANYONE says on You Tube, unless you find it useful and/or cheering. The people who just go onto YT to have a go at others are the ones who are totally ineffectual in thair real lives so they hide behind a computer to make themselves feel 'big' again.

You should definitely come over to Live Video, because they are mostly older or otherwise more mature vloggers and are very supportive - we've even started a few communities over there that are spawning some great friendships :).

I get really annoyed when the adjective 'brave' is thrown in my direction. I know people mean it as a compliment but sometime's I want to say 'Bravery suggests having a choice about doing something dangerous or something safe, and consciously choosing the dangerous thing because you think it's the right thing to do. This is NOT my choice, therefore I AM NOT BRAVE! OKAY!?'.

Sometimes hurting yourself is not worth the challenge. There are other ways that challenge your intellect without jeapordising your body that are just as rewarding (maybe even moreso?). I can't begin to imagine what it's like to go from being a full-on athlete to a disabled person in such a short amount of time or the frustration that holds for you (mainly because I'm a) disabled from birth and b) kinda lazy! haha) but there comes a point where you say to yourself 'is this really doing me any good or am I simply trying to prove a point that doesn't matter in the big scheme of things?'.

I know that when my self esteem was at its lowest, I could be incredibly petty to the point of downright hurtful and that was my way of taking control, and dealing with the obsession I had to make sure people knew I wasn't mentally deficient. Once I found a new way to look at myself (ie, stopped giving a flying fuck about my need to control and the people who were too ignorant to find out how intelligent I am!) I saw what really mattered, and as a consequence became far happier, and easier for others to deal with.

Do you think you might be able to handle a 'handcycle' better? My wheelchair is really hard work and I'm a lot stronger than you, so I'm thinking of getting a handcycle that clips to the front. I saw one being used on You Tube and it's actually looks like there's a lot less 'hauling ass', and the peddling takes the strain.

Neil said...

Hi all:

Gaina's handcycle question is interesting, and something I wondered about. They have derailleur gears, bu they would still require upper body strength. I've seen a couple of them here in Regina, and they're so low that I would worry about not being seen by traffic.

I've lusted for several years after a Greenspeed recumbent trike myself, and that would be as low of lower than and hand trike. And yes, I'd be scared to ride a recumbent trike on the streets here: our traffic is just NOT bicycle-friendly.

See if you're interested in very funky and expensive pedal power.

Beth, I dearly wish I could do the 5K with you; I would happily take to a wheelchair to keep you company, and to challenge myself.

I want a video of the double bass challenge, and I promise I won't laugh!

Much love and many virtual hugs...

Neil said...

Forgot to mention that I picked up Blood Price (the book) from the local library today. And the kids loved your squirrel lap dance video!

Cheers; and now I'm off to expand my literary horizons.

Dawn Allenbach said...

*snaps fingers in the air* Go on with your bad self!

OK, seriously now. I literally groan when people call me "inspirational," "brave," "courageous," or the like. I'm not doing what I do to inspire a bunch of ABs who can get into the vodoo shop or the restaurant or drive themselves to the vet or even wipe their own butts. I'm living my life in the way that seems best for me and what I want. I like doing research. I like learning. I like teaching.

And fine, I'll admit it -- I like going into a classroom on the first day and watching my students' eyes widen and their mouths drop open. It makes me giggle.

And you can always count on me to say cut the shit. Or the cheese. Or the pumpkin pie. Whatever.

Michael said...


Sorry, I had to.

Actually, I am using you as an "inspirational challenge." Specifically, if you can go to Japan, I can go to South Korea.

Yeah, yeah. Not quite what you are talking about. But you are someone that I am looking up to, because I'm looking at you and seeing everything they are doing and th thin king at myself and seeing what I'm not doing.

I need to do more of what I'm not doing.

My first thought when you mentioned doing a 5K: I wonder if she's got a hand cycle? And I see that gaina has the same idea. I wonder if she's talking about the "Dragonfly" by Rio Mobility?

Wheelchair Dancer said...

Inspirational .... naaaah.

Soul-baringly beautiful and honest.



Elizabeth McClung said...

Cheryl: Sorry to break it to you but I roll WITH the O2 and the coldpack on - that way, I get further before I REALLY get in trouble (and the ambulance drives slowly beside you like a vulture).

The walker would probably be better, actually, I just need to figure how how to transfer unless I am rolled in on it - also, I need to go from "french grip" (lots of micro finger function) to "German grip" on the bow.

Lene: Yes, I think many of us do find ways to challenge ourselves, and I don't think of myself extrodinary except when I run across some people don't and go, "Why are you doing that, it is unnecessary and risky?" And I am like, "Duh!" But you are right, often our "risky" behavour might look a lot like "able bodied" behavoir, which with you are PWD is pretty darn risky indeed.

Gaina: Yes, well, I didn't think they were the Youtube Brain Trust but still, they are OUT there and driving vehicles and in the population so they are a TYPE of person who I would meet.

I agree with you on the Brave thing, becuase as I often say, "Where is the 'chicken exit'?" like they used to have on roller coasters; "Where is the off switch?" It isn't like I signed up for this at "Adult Learning" as an education experience.

Oh, if I didn't do things that don't matter in the grand scheme of things, I would go a bit barky. The difference is I KNOW they don't matter, I don't delude myself that I am doing something magnificient or as I used to tell people I climbed with: "You know....the mountain doesn't CARE if you get to the top. In fact, you will be dead, it will be here 1,000 years from now and it STILL won't care." - yeah, I was SO fun to climb with.

I did use a handcycle last summer and while it isn't "easy" (legs really are stronger than arms, go figure) - it would be better than a wheelchair so yeah, let's cheat a little!

Neil: There are the "efficient" handcycles which are low to the ground and need like the size of a giant truck to haul or store them or there is this evil solid Iron thing I rent called the Mach 3 (probably because it weighs three tons!), which is sort of a wheelchair with an extra wheel on front, like and offroad wheelchair with the petal assembly smack in your face. Not as efficient but WAY easier to store in a bike locker and WAY easier to take off road (I use it as an off road wheelchair, going downhill through tall grass whooping it up!).

Well, I would welcome the company but get yourself some good MP3 music like trance with a heavy beat (or the Imperial March from Star Wars) becuase for 40 minutes you need SOMETHING to keep you on task.

When I get proficient enough to make the double bass makes sounds that I WANT it to make, I will take a video. Promise!

Dawn: well yes, I find it kind of odd when people are like, at my last 5K, "You are so brave!" or "You are so inspirational" - and I am like, " can walk right, then you better get going because I am trying to BEAT you - and think how embarressing that would be so motivate yourself with all that inspiration right NOW." 0 so no, not very patient since, no real secret for manual users - Hills SUCK! So when someone says that my creeping up at 6 inches push is "inspirational" I think, "what, you can't WALK up a single little hill?"

Yeah, I assumed you did teaching which I thought would have some pretty good stories.

Michael: Wait a minute, I've been assuming that if you are going to South Korean then going to Japan MUST be possible (by the way thought of you when I saw that National Treasure go up in flames in South Korea and was like: SUCK!).

Well, I have a lot of down days too, but I think it is good to get a mental zoom back from my life and say, "What kind of stupid ass thing can I do to REALLY piss off all my doctors" - which is actually pretty much what I say. Linda of course went "MAY FIRST!" when she was reading this and then it comes out, SHE is signed up for a 10K for April 28th and hasn't jogged in like.....four months. She is "hoping" pushing me around Japan will count as "Training" - and I am the one who is delusional?

Wheelchair Dancer: Well, you made me think - so I did and this is what I came up with, which I tried to be honest about cause, I dunno, so many people try to shape who we are that I wanted to be who I am - woah, that almost sounded profound - I better back away.

Gaina said...

Micheal: Yes, I have just been looking at the dragonfly! :)

Rio wheelchairs have a you tube channel, in case you haven't seen it (riowheelchairs) and I have just seen a pivot lever attachment for your wheelchair which looks pretty nifty if you have the 'push-ability' but not much strength in your fingers to grip the rims.

FridaWrites said...

Agree with Gaina completely about YouTube. People are just mean there sometimes to everyone about everything (even cute little animals and babies). And though we do have to deal with people like that everyday and have no choice, I hope the world is changing for the better, and it doesn't represent everyone's beliefs. Compare to segregation and what people had to deal with in each interaction. We still have racism, but far more people recognize that kind of reaction is unacceptable.

My husband said another volunteer said something to me about being "brave" on Friday morning and was surprised I didn't react. I just didn't hear her. Frankly, I'm not sure how to react. I'm with Elizabeth--I want the chicken exit.

Dawn, I love to go into places where I haven't warned them first that I'll need a chair or two cleared for me, so that people don't know I'm disabled. Or meet people whom I didn't tell I was disabled. And watch the fast struggle to push down the stereotypes. Less fun is running into people I know, which still happens a lot.