Alisha Lee writes of her struggle to be a regular 16 year old in a world where rules and negative attitudes are some of her greatest barriers.
I am 16 years old and live in Ontario, Canada and have congenital muscular dystrophy. I know it will happen [death] to me earlier than to a regular person. In 2005 I had to get a tracheotomy. I’m on the ventilator all night because when I sleep my muscles relax to the point where I’m inhaling but I’m not exhaling. During the day, if I’m really upset or my meds aren’t working, I can’t breathe so I am on it all day. I can still go to school because the battery lasts eight hours. I can still talk when I’m using the ventilator. I’m limited in the use of my hands, but I can do a little – like I can use my iPod, which is really good. I use my laptop through something called DrivePoint. I use the joystick on my chair to navigate the mouse and click on what I want. There’s an onscreen keyboard and I have to click each letter. It’s slow but I feel lucky to have it. My wheelchair is electric. If I didn’t have it, I would need someone to push me everywhere, which I would hate.
Every morning, I wake up and my dad gets me ready. I usually choose what I am going to wear. If I have a nurse a couple of days in a row, she will put the outfits I chose together in my closet so in the morning I’m not scrambling around for clothes – my dad doesn’t like doing that. About 2 years ago he started saying, “No, you have to tell me what to do.” As I got older, he said, “You need to have more responsibility since I’m not doing these things for me.” He wants me to feel like I am in charge, so he said,”You tell me exactly what you”. He says this is direct care, that I should make the decisions.
At school, I have to go to the room with all the kids in the disabled class, it’s my home room. There’s one other person who’s like me. She has spina bifida so I hang around with her a lot and we talk. I have some other friends at school. We’ve been in the same [mainstream] classes together and some of them started talking to me when they saw that I’m able to do the work and be in school in a regular environment. There are other kids who ignore me because of the kind of situation that I’m in.
My first class is geography so the educational assistant (EA) takes me upstairs. The EAs write my notes and transcribe for me if I’m doing tests or quizzes. If there are group projects and people are getting together after school to do them, I can’t go to their house. Usually they’ll just give me a portion to do and if I have any questions I’ll email them or Facebook them. That’s one of the ways people have gotten to know me. There are three girls who I’m really close with now because we’ve been in math, science, and geography together. Now we talk on the computer. We’re going to a concert together at the end of summer.
There is always an EA in class with me, and my nurse is there all the time. It can make it difficult to have a friendship. I’d like to go to the cafeteria for lunch and sit with my friends. One day, Carolyn, my nurse, and I actually went to the cafeteria; we didn’t come back to the disabled class. I got into trouble but it was so much fun because my friends and I know so many people in the school. We had a great time – this big table full of people – it was so much fun. And then my nurse fed me and after she went somewhere else where she could see but not hear me and she just let me hang out with my friends. Once I asked to go to the cafeteria and the EA said, “OK, let’s go.” But they brought the whole [disabled] class. That defeats the purpose, as far as I’m concerned.
What’s important to me in life is trying to be as regular as I can be, up to the fullest point, do everything I can – and don’t waste time or sit around moping. Being a regular teenager is very important to me. The nurses have been helpful for that. Ever since I’ve had nurses I’ve been able to go out more. I ask them and they say, “Sure, no problem.” I don’t have to rely on my parents, so that’s a big thing. There isn’t a lot of romance in my life, although there are lots of guys I am interested in. But I think when they look at me, they see the chair. I want to be a lawyer or something to do with the computers – I love computers – maybe graphic design. I’m still looking into it. When I turn 18 I don’t have funding for nurses anymore, I get a Personal Support Worker (PSW) instead. I’m on a waiting list for independent housing. I’d like to travel, to see Paris and Jamaica.
I know that the system in Canada is better than lots of places. My parents don’t have to pay for my health care, and the nurses are covered. But I think that people who need funding to make things accessible should get it I really, really need to have a place to live that is accessible and they keep declining my parents saying they make too much income. They both work hard, but it isn’t enough to take care of three kids and do the renovations to make our house accessible. More places should be wheelchair accessible. It really bothers me that there are so many things I could do if things were built differently. What I wish is that we had a world where everyone could be regular without being stopped by things like stairs or rules that pretend to be in their best interest.