Thursday, September 8, 2011

The wheelchair was my boogeyman: Is Conductive Education at war with independence?

"It's much harder to work with children once they sat in the wheelchair" says our Conductor Kata and I can understand that sentiment. There's less of a drive to stand, to move, to walk once you adapted to this new setting. We all get comfortable and a little bit lazy sometimes, while they key to Conductive Education is putting your body to work. I guess for that reason my parents have used a stroller with me until I was 12. That way it felt like a temporary transportation device, something that we used to get me from one place to another while I'm learning to walk. To us a wheelchair felt like giving up. When you get to a point that there's nothing else you can do, that you're too big and too old to improve. It was a symbol of resignation and defeat. My parents have also used the concept of "ending up in a wheelchair" as a way to scare me, to motivate me to work harder. As much as I love them and I'm grateful for what they've done for me, I think they made a mistake with this one. For me a wheelchair was something scary and final, something unavoidable and no eight year old should ever have to deal with those thoughts. But, when you think about it, popular culture is pretty much on the same page and has for ages. A wheelchair is so dark and makes you so powerless that even Polyanna couldn't cheer herself out of it. As a consequence, there was never much of a drive to have me do things for myself in the kitchen or outside of the house, so I didn't get used to doing things in the wheelchair.

Conductors in Hungary where the same way. I don't know what they're doing now or how other centers around the world are approaching this issue, but in the Peto Institute in Hungary they would always butter our bread and they would make us sit in the chamber pot although I have been using toilet at home for years because it was faster. We were never learning things other kids  did with their parents every day. To me it felt like the Peto method was at war with itself. Working around your disability in my mind also means making your own sandwich and going to the store and getting things done. At the Institute, outside of rehabilitation there was little to no drive to independence as things were done for us and there was no expectation for us to do them. . I don't know if the idea was that I would magically pick up those every day skills when I started walking. It was my parents who occasionally would bring out products so I would fix my own lunch. We didn't really have a proper set up at home for me being in the kitchen until we adapted it a bit so I can reach stuff from my wheelchair.

Also, the boogeyman, the wheelchair... I could've been so much better, so much faster in it, if it wasn't for that fear of what it means. I first started using it by myself at my highschool indoors when I was 15. Initially, I would insist to transfer before every class. Then at Warsaw University I would go out a little bit by myself or use paratrasit to go stores and cinemas. I didn't use it extensively until I moved to America at the age of 25. I had to become independent overnight, get to places and do things by myself, in that chair. I never had to rely on my muscles as much before, every day was an extreme work out.  My "boogeyman" is tailor made, Swiss. Carbon fiber and titanium. Nothing like those large heavy things you see at hospitals, bright yellow. It is not a sign of resignation it is a manifestation of my independence. It is what enables me every day.
To me being able to do things for yourself while physically improving have to go hand in hand. Otherwise you're slowing your growth. Developing in some areas while staying behind in others.

3 comments:

  1. My children are in wheelchairs. They are four years old. They're new to life, and I am new to this wheelchair lifestyle. I never know if how I handle daily interactions with them and how I act as a liaison between them and the public in general are right or in their best interest, but I wish I had a way to know.

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  2. My "ending up in a wheelchair" was forecast as a far-off future destination for me at age 17. That knowledge changed and shaped how I lived my younger life. 17-year-olds should not have a "bucket list"! The "chair" was my bogey-man too - always there, nipping at my heels - pushing me to move faster, see more, get more done because some (unknown date) in the future I was DOOMED. heh. Eventually, that "scary day" arrived - and it arrived abruptly. Surgery to forestall the inevitable, simple outpatient-surgery-you-will-be-back-on-your-feet-in-two-weeks turned into a near-death experience and, to be honest, 9 months later when I was allowed off total bed rest: being alive and being able to sit up was just a whole lot more important than whether locomotion was by foot or by wheel. Yeah, I had to adapt. I had to learn (and am still learning a decade later) how to do things differently. The chair is a tool. It doesn't make me any different than who I was before the chair. Every day I fight the tendency of the world around me to make me "dependent" simply because I use wheels to get around. There is a tendency for "peds" to think that "wheels" can't do even the most basic things. Sometimes I can't - but the reasons aren't for a lack of ability, but rather because whatever has been placed where I cannot reach it or where I cannot use an adaptive method to complete the task.

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