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Thursday, October 14, 2010

Me and My Wheelchair: A Love Story

Every morning I wake up my black lab greets me with great enthusiasm bordering on a giant celebration. Tail waging, excitement coursing through every fiber of her body she lets me pet her head for a while. She then looks at me, directs her attention to my wheelchair and looks back at me. No doubt she is thinking "let's go have fun"--get up and we can play ball. Sadly, I disappoint her and me every morning. This little ritual I play out with my lab makes me miss my wheelchair--it is a visceral pain. I am in some ways in mourning. I miss my wheelchair, I miss the power it gives me to be independent. I miss the feel of upholstery against my back. I miss pushing against the tires and the intimate knowledge I have as to how I can direct it's forward thrust. Why I even miss the dirt I collect during the day on the wheelchair frame-an absence my lab misses as my tires clearly pick up smells that are utterly fascinating. I miss watching a scary movie and the way I slightly rock back and forth. I could go on but I miss my wheelchair more than anyone can imagine. Sure some other wheelchair users will get my sense of loss, people like Simi Linton who in my Body Politic wrote about her "cherry red" power wheelchair she named Rufus.

As I grimly greeted another day bed bound, I thought how many people are there in the world that I could share my views with. Not many, precious few in fact. Certainly not the average American. Nope, for most people without any knowledge of a wheelchair they see it as a mechanical device--at best. A wheelchair is a thing, a product, an inanimate object. Worse yet, many see and associate a wheelchair with inability, physical incapacity. Here, think Grandma, Grandpa and all the elderly cannot do. The symbolic association with with a wheelchair is not positive--it is the ultimate symbol of weakness and disability. This makes me crazy--how I wonder can the average American be so stupid. I love my wheelchair--every piece of it. It is a part of me, akin to my leg or arm. I cannot envision life without it. It is a vibrant positive part of who I am. When it breaks, I am devastated--how could such an integral part of me fail. Such mechanical failures are very rare, most easily fixed. But such thoughts remind me of how I feel when my body becomes sick--yikes, I wonder, why did my bodily systems fail.

So here I lay tapping out my words on a key board loving looking at my wheelchair. I wonder what my son would make of such thoughts? Surely the old man has lost his wits. He may be right in his thoughts but I think not. I think my obvious and intense feelings for my wheelchair reveal the great divide between those who use a wheelchair and those that do not. We are talking about a cultural gulf the size of the Grand Canyon. I firmly believe there is a disability culture as unique and fascinating as any other subcultural group. Not all crippled people are members--some are not happy nor do they embrace disability culture. The reasons for this are many and varied starting with the overwhelming stigma associated with disability and wheelchair use. But some of see through this cultural bias--we understand it for what it really is--bigotry plain and simple. Frankly I am letting my emotions fly or as some in the body art community would say "letting my freak fly". I am acknowledging my love for a fire engine red wheelchair with its plain black upholstery, one brake, four wheels and superb ride. It is a part of me I cannot envision life without. Hence I mourn its temporary loss and look forward to the day we are reunited. And I know that day grows closer every day. My wounds are heal well and I am making steady progress. In fact, the wound care nurses characterize them as "beautiful". Of course, I look forward to the day they do not exist and know that day will come in the next few months. Then and only then can I be reunited with the most lovely wheelchair on the face of the earth.


FridaWrites said...

My dog sniffs my wheels deeply too to determine where I've been without him--no longer interested in my shoes.

Wheelchairs are blessings, really.
Especially the newer designs, both for manual and power wheelchairs. They really can be enabling.

I am really concerned about the Medicare changes in January that will take wheelchairs away from people while they're in the hospital--not sure if the rule applies to nursing homes too. Really, when they're that used from beginning to end of the chair's durability, they need to remain with the user.

Court said...

A wheelchair to me is synonymous with power, so it's easy to understand you are mourning such a loss. When I see a person using their wheelchair, I see a person looking to upset the power dynamic imposed by TABs.

Some days I still find it hard to use my scooter (mentally) because of the social implications from TABs, but in reality using my cane is more of a prison, in that I don't have the same freedom and will end up tired, falling and in more pain.

Your loss is great and love of your wheelchair more than justified.

Court said...

P.S. I sent you an email a few weeks ago and was just wondering if the email on your profile is correct.

Becs said...

One of my friends who was born with a disability was never offered mobility aids. Driving a car for the first time opened her eyes to her independence. It didn't take much convincing later for her to realize that wheelchairs are good things. They've gotten even better as she's gotten older and her mobility is diminished.

emma said...

This is a beautifully written post and I think if more people read it it may go some way to help them understand that a wheelchair is much more than an inanimate object (this includes me).

Greg said...

It took me a few years to see my chair like this, but I feel the same way.

My lab does the sniff test

william Peace said...

Court, Since I found the wound my usually spotless record in replying to email is, well, not so spotless . Please resend and I will reply. Yes, the email on my profile is correct.
Firda, Wheelchairs are indeed a blessing. I wonder when the next big break through will come in manual wheelchair design. All current designs in large part still stem from the rigid chair revolution of the 1980s. Sure materials are different but the basic structure is the same.
Greg, It does take time to fall in love with a wheelchair and the very idea. Like it or not we absorb dominate sociocultural norms and it takes time to overcome this bias. For me, 30+ years post injury, I discard all media reports about wheelchairs and simply love the damn things!
Becs, That is so sad to be denied adaptive equipment. It highlights the stigma still attached to wheelchairs and other so called durable medical goods.

strangecripple said...

I feel you on this! (Yes, I'm crazy behind in blogging, YET AGAIN). I love my wheelchair. Even though this one is bordering on far too old, it creaks, I have to replace every bearing every 3 months..I love it. I hate being away from it. It got temporarily lost when I was hospitalized in the spring, unable to come with me in the ambulance from one hospital to the other, and I was very upset. Everyone kept saying "but you can use a loaner one"- sure I can, but its not mine! And I just plain hate being away from it when it breaks- I feel trapped, I feel out of place. Thats part of why I've learned to fix most of it myself! :)

beauregard said...

my wheelchair's name is Michaelangelo. He's my lover, my best friend. I have lots of friends but he's the only one who gets me. He's been breaking a lot lately I have to do temporary fixes every day. That's because we're homeless and we move around a lot. Go through the woods, up mountains, across rivers, anywhere we want.

Anna said...

Everything has a reason. I have no wheelchair but I am suffering much with schleroderma but I always see things positively.

Electric Power Wheelchair