Walk a Mile in My Shoes….Thoughts on Growing Up with a Disability

(I wrote this in 3rd grade in London, England).

About My Life

It feels horrible to be different from other people. So I sometimes wish that I could blow up the world. I have spina bifida and it feels so awful being crippled that I wish I could go outside and shout my head off. I can’t run very fast. It is fun to go to school because the children are nice to me, and I am good at art, reading, spelling, and science.

I go to a special gym class and Mr. Elliot tells me about things I don’t think I can do, but I can. I have to go to the hospital in a couple of days to have an operation and I feel sad because I hate operations. You get a shot at the beginning. It’s horrible to stay in the hospital because you have to stay there overnight and I feel lonely at night in the hospital without my mother. I don’t think it’s fair that other people don’t have that many operations and I wish I didn’t have to. I’ve had fifteen operations already. They are awful. Some people think I am brave to go have an operation and I am. Once in America I had to stay in the hospital for five weeks. I had two horrible operations on my stomach.

I hate it when other people look at my braces because it makes me think that they’re going to say something mean to me about them. Sometimes they do, and I hate it because it makes me feel different. I just don’t like feeling different. It was horrible going to the school in Germany because people teased me a lot and I didn’t have any friends. They called me a cripple. It’s not a nice thing to be called even though I am one. They like me better at ASL than at the school I went to in Germany.

I don’t think my family hates me for being crippled. I think they worry about me a lot. I worry about myself a lot too. I worry that I’m never going to get these braces off and that I’ll have to wear them forever. I am almost ten years old. Whenever I get these braces off – if I ever do – I wonder what it will be like to wear regular shoes instead of braces. I love my family and they love me. I don’t think they mind the way I came. I like to play outside except when it’s freezing cold out.

I like to go to Nantucket and wade in the water. Nantucket is in America in the Atlantic Ocean. I love it there because it’s fun and we get to go outside whenever we want to. I would like to know how to swim, but I don’t like swimming lessons because I think I might drown and it makes me feel scared with only one person to hold on to and not my own mother.

I feel a bit nervous when I meet new people I’ve never known before. I’m shy sometimes. I don’t like being shy at all, but it’s hard not to be. I get an awful feeling when I’m shy – I feel like my face is pick and everybody’s looking at me. Some people ask me why I have braces on my legs, but I’m too shy to tell them. I just go past without telling them. Once somebody said I had plastic legs and it made me feel awful. Maybe they do look plastic, but I don’t think so. I hate the way my legs look – there’s lots of scars on both of them. One of my feet is curving in and I have to have an operation. I think my legs are too thin and I don’t think they’re that strong.

It is horrible to be handicapped because I feel that no one can understand what it’s like to be handicapped except somebody who is.

PS. I don’t feel the same way that much anymore, and I know how to swim now. (Three years later, in 6th grade).

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