Sit Awhile In My Shoes

Sitting in my shoes

I had just finished speaking to a class of elementary students and was leaving the school when a young child came up to me and said “It must be really cool being in that chair”. I was at a wedding reception once when a middle age woman said she thought the chair was pretty neat. She obviously had had too much to drink so I ignored her remark. I know an institution of higher learning that has students spend a day in a manual chair in order to get some sense of what it is like to be so confined. An organization I belonged to had a fundraising dinner to get money to purchase handcycles. When I arrived children and adults were riding handcycles in the street laughing and fooling around.  When they hit the curb they just stood up and moved the bike. I went berserk. I dropped off the board of directors the next day. A psychiatrist I was seeing after my accident said to me once he wished he could trade places with me for a month. He believed he could gain an understanding of what it is like to be in a wheelchair. I know many people feel awkward around individuals with disabilities, but come-on, except for the elementary student, what were the others thinking? If you know your time in the chair is limited there is no way you can understand what it is like. How can an able-bodied person ever understand what it is really like to be disabled?

Living with a disability is not cool, nor is it a game that can played at. It can’t be understood by spending a few hours or a few days in a wheelchair. You must live it to truly understand it. How do I explain to someone the overpowering feeling I get to move my legs? How do I convey the “impulse- like” electrical charges running down my legs telling me they want to move? I had my son cross my legs once when this was going on but it made no difference. How do you explain this to anyone when you are not supposed to have any feeling below your arms; or that I feel so cold most of the time that I wear a knit hat in my house? I can’t even explain that to myself. One of the worst times I experienced was one night, (that’s when my bogymen come out) when the bed motor that raises my torso was not working. I woke up early one morning and had to lie in bed for 5 hours waiting for morning not being able to move or access the things on my hospital table. I just about went crazy. We live in a different world that no one can fathom unless they live there too. Maybe I’m being too harsh, but this is my perception.

1 Comment

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  By SingingWheelchairDude, March 15, 2011 @ 5:56 pm

  Rich, you are so right — people simply cannot easily understand what it is like, and I think because they simply do not experience the world as we do. I have muscular dystrophy and use a big power wheelchair all the time. When I roll up to a building — a diner, for instance — I never look at the stairs — I hardly even see them now. I am focusing my attention on finding the ramp from the street to the curb, or gauging this steepness of the ramp to get in the door, or the width of the door itself. Generally, lacking close, personal experience with wheelchair-users, not one of these things is in the mind of an average able-bodied person. And even such experience doesn’t work all the time — my friends in the choir I sing in are very sensitive to my issues, but I am the one who has to tell them what my issues are. Even they — persons of good will who like me — do not even see these things. The way I look at it, most people can’t be blamed for their lack of consciousness and understanding — they are constitutionally unable to see the world in our way. Whether or not they wish to be taught — that then is the problem.

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