When I think about what it was like for me growing up disabled, I particularly think about how my life was marked by big changes. I have experienced two powerful transitions in my life. While it hasn’t always been easy, it was worth it to keep knocking down challenges one by one and marching ahead.
Let me start with the first transition.
At six months I was diagnosed with CP (Cerebral Palsy). This disability affects people differently. Some people might have trouble with speech and walking, and for others it can affect their whole body.
For me, two parts of my body don’t work properly: my legs and my fine motor skills.
When I was diagnosed with CP, nurses came by the house so my parents could learn how to take care of a child with special needs. My mom told me that it was a struggle as she had me when she was nineteen, but in the end we made it together as a family.
For the first couple of years of my life, I was in a wheelchair and I couldn’t crawl in the normal way, with knees bent and hands firmly pressed against the ground. Instead, I crawled flat on my tummy.
A doctor decided that I should go for surgery on my hips and my hamstrings so that I could bend my knees and not be as stiff in my muscles.
In the summer of 1996, when I was six years old, I went for surgery. My six-year-old mind didn’t understand what was going on. All I remember was the pain that I felt afterwards and the color of the cast I was in. It was pink. My legs were outstretched straight in front of me and while the pain was really bad, I didn’t realize that a transition had taken place.
It would be one of the first transitions that would change my life forever.
When it was time to get the cast off I remember the kind doctor greeting me with his smile and telling me that I did well. I remember the ticklish feeling I experienced when he took both casts off, but I also had a sense of relief.
Slowly, I made the transition from a wheelchair to a walker and I always tell people that surgery made it possible for me to walk. It was a defining moment of my life and I am grateful for it. People can still have meaningful and fulfilling lives without walking, but I felt it gave me the opportunity and freedom to be more independent.
The second transition that I made was going from a special needs school to a regular school which had a mix of people. This was my first time in a school that had individuals without disabilities. It was a whole different world.
For as long as I could remember, I had been surrounded by people with special needs. I wasn’t aware that there were kids my age that didn’t have disabilities, so when I transferred in the sixth grade after I moved, I was a little scared that people would pick on me and not accept me for being different.
Despite having some great times at the special needs school, I didn’t realize how much it had sheltered me and delayed my development. I was very behind my peers when it came to telling time, counting money, and even handwriting.
I didn’t learn these things until grade six when my T.A. sat down and taught me from the ground up. I didn’t have many friends at the time either, so I felt very alone and isolated. That special needs school was my safety net so to have that gone from my life was scary.
To make the transition into a regular school system easier, I met with a social worker every Tuesday to talk about various things going on in my life. Such as friendships, relationships, home life, and school work. That social worker was like a friend I could talk to about anything and everything, and it made me feel better.
As time passed, I met more people throughout high school, and it surprised me that we shared similar interests. While at times I still felt like I didn’t fit in, it was slowly getting better and my whole world had opened up. My special education teacher in high school gave me a book called The Barn at Gunlake. She gave it to me because she felt I could identify with the main character.
I did. I was inspired.
It’s important to keep in mind that disabled peoples’ lives are affected by their disabilities, and authors should write us as whole human beings, neither ignoring our differences, nor emphasizing them. If authors do this, we will have more characters that we can genuinely relate to and connect with.