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Wheelchair Dancer Wheelchair Dancer | 03:35 UK time, Thursday, 16 August 2007

In an earlier prior to my most recent injury, I wrote about my current physical therapy situation:

[My PT these days is mainly in a safe, private space. It's about relief, stretching, realigning, damage control, damage mitigation, performance enabling. I still hate it, but both my East and West Coast PTs and I have come to a semi mutual agreement about what to do. I am mostly safe. West Coast PT wraps anything she's not working on in blankets (of the leopard print variety ... grin). She's got a great office. The East Coast guy works in my home; I choose the music and I get to drink coffee. Neither of them forces anything. Neither of them asks more than I can do.]

Until the shoulder AC separation happened, I thought this was a pretty sweet setup; all my emotional fears had been allayed, and the body stuff was going really well, too. I was on the West Coast when I fell and hurt my shoulder, so I was thinking I would work with my usual person. As it turned out, I couldn't drive 45 minutes to get to her private office. So, I had to start again. At a new place, in a public clinic, with a new person -- who didn't do home visits. I was totally unprepared. And so were they -- but that last part was wholly my fault.

I decided beforehand that I wasn't going to tell them that I was a wheelchair user; they were just going to have to deal. And boy, was that a poor decision. I shouldn't have been driving, but I drove -- I figured 5-6 minutes was nothing. I couldn't push my chair by myself from the parking lot -- I couldn't push it anywhere else either -- no reason why this location was going to make a difference. But, hey, I was feeling tough and angry. Then, I found that no one at the front desk was answering the clinic phone. I needed help getting from car to clinic, but decided not to wait around for it. I grabbed my crutches and walked. But that was a bad decision, too. I was exhausted, in pain, my legs were wobbly and doing the spasticity thing. I collapsed onto a chair, and chaos broke out around me. Immediately, they ran down for my chair, lifted me onto a table, plied blankets and water -- triage was the name of the day. I felt stupid for taking a "like it or lump it" brazen cowboy attitude. It was unnecessary, and I put myself in a worse situation than I would otherwise have been in. I was impressed by how sensitive they were to my feelings and by the care they provided.

After that, things have been going really well. I work only with the lead PT (this is not a privilege, see below), and she has been creative about coming up with a good care program (going to the local rehab center for water work), adapting the exercises because I can't get my chair up to the machines, allowing time to rest in between the exercises, etc. etc. I find this pretty funny. I mean, it's a physical therapy practice, right? In the Bay Area -- crip central... Don't they think there's at least SOME chance a wheelchair user might come in and want to have PT? I mean, stuff happens and not just to athlete-dancers. Not everyone can or wants to go back to rehab as an outpatient.... But no. Even the basic treatment tables are too high to transfer to. Sigh. Guess it's kind of like doctor and dentist offices.

Lead PT is pretty cool about it all; she understands that I am disabled, and she also understands that I am an athlete, with the performance expectations of an athlete. She has done a great job of working with my limitations, but not treating them unless they are directly relevant to the injury and to not falling again. She has also been eager to learn about what I do - we watched some video and I showed some photographs. I demonstrate different movements so she can figure out how to get me back in shape.

Things got even better/funnier when she broke her ankle; she came in with new experiences of how people had looked at her, treated her, spoken about her over her head..... Was this part of my world? Did I know what she was talking about? Was this what it was like to be disabled? Well, no, not exactly... but some of the experiences were similar, I said. She couldn't believe it, had no idea, completely eyeopening... well, duh!!

And, so, with the recovery under control, I have gradually become aware of the effect I am having on the other clients and the other employees. I freak the trainees out! It's not that I am privileged to work only with Lead PT, it's that no one else feels comfortable working on me. The trainees have very little neuro experience; they worry about the spasm/involuntary stuff; they are scared to touch me. They don't work with disabled people often -- the most physically impaired people they have seen are the post surgical inpatients (for some reason, they don't see age-related impairments as disabilities). They've never even seen a wheelchair like mine -- I have a nice chair, a titanium ultralight. But it is not all that unusual, all things considered. It took one guy three sessions to remember you could pop the wheels off and that it didn't fold.

The same cheery chap asked me why I was spazzing more today; I grouchily said it was his job to know that kind of thing. He went to ask. Another one confessed that even putting ice on my shoulder was scary. A third said he was too weirded out to stretch me -- I have a nice mix of hypermobility and spasticity -- getting an actual stretch is always an undertaking. Lead PT has them watch and learn -- but she does ask if I mind. Mostly, I don't. But sometimes, I just want to get strong. I don't want to be teaching these sweet young things about disability and wheelchair use.

I terrify the other clients. OMG. A wheelchair user. A cripple. The office seems to serve three main kinds of clients (there are other people there, but these are the dominant types): high school athletes (some of whom are oh-so-worried about their ability to get a college scholarship -- it makes me sad), middle age sports fanatics (you know, was out this weekend climbing mount everest for a round of golf and I reinjured the old college knee), and older people recovering from illness, injury, or doing maintenance routines.

The young look at me -- I feel that they are thinking this could never happen to them. They are strong, beautiful, sporty: disability? Never.

The weekend jocks? They eye me warily. They know. One day, it might happen to them. Perhaps, they are already on the path; this one hurts more than they had ever imagined. Perhaps, they will never recover. They are most likely to encourage me. "Keep going, there." "Wow, you've got some strength." "Nice chair. Can you go fast?" "You are so inspiring to watch." "You do that sooo well." Puke. Vomit. Hurl. Watch me run over your feet and cripple you. I am mean and evil. I also use them as my benchmark. I am on 2lb weights now, with 3lbs for bicep curls. One day, I am going to kick their little asses! OK. No time soon. But I do spur myself on with that thought.

The older people and I barely make eye contact. And if we do, it is so they can pour out pity and sympathy. For all their trials and tribulations, they've escaped the dreaded wheelchair. I get this; I've slipped over the edge they are working so hard to avoid.

And for all my bravado and mean toughness, I confess that my pride is hurt when someone who looks older or more frail than I turns around, picks up the 10lb weights, and does 3 sets of 10 without appearing to puff/ sweat. When it comes to stereotyping, prejudice, and the body, I am as bad as anyone.

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Comments

This post brought back a lot of memories for me (not really good ones) - but I am glad you articulated your experience. The local sports rehab place had never had a person in a chair before and eventually told me there wasn't anyone there who could "handle" me (This begs the question of what PT is about if not for people who are super able or going to be super able?).

Is the treatment at this new place you hate or that because of change you were forced back into a place you had found people so you didn't have to be there anymore?

  • 2.
  • At 03:02 AM on 18 Aug 2007, wheelchairdancer wrote:

Hi Elizabeth!

The treatment part is going well -- YAY! I'm done with the acute stuff and now I am working on being better than ever. And I don't really hate the work. I can see the results in my dance immediately... what I hate is the spectacle and the structural and personal idiocy (as opposed to being able to work in my home or in a private office).

I still have to figure out what other chair users do for PT ....

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