By Keirnan Bray, student, Kamloops
Hi, my name is Keirnan, and I am a Grade 9 student in Kamloops, BC. I have a very rare disorder called Lesch-Nyhan syndrome that affects my muscles, my speech, and my body movements. I am in a wheelchair, and I need support with everything I do. People treat me like a baby and use a baby voice when talking to me; I have to remind them that they should talk to me like a regular person. People assume that I am not smart because of how I look and because I cannot speak clearly. On a day-to-day basis people underestimate me, but with support I get stuff done. There are a lot of barriers and challenges that I face every day in my life and in my education. Like many people with disabilities, I have to be an advocate daily, in big and small ways, to feel included in my school and community.
On a day-to-day basis people underestimate me, but with support I get stuff done.
Most people have no idea about the struggles people with disabilities face every day. Some common difficulties that people with disabilities experience are things like steps going into buildings, getting through busy hallways, and finding automatic door buttons. There are also social challenges like being underestimated all the time, not being included in school sports because other kids don’t really think about you, and friends forgetting that a wheelchair doesn’t fit into a regular car, so you get left behind. Accessing a fair education is a challenge—not because of unfairness, but because people don’t realize some of the barriers I face. In bad weather, getting to portables can be unsafe or very messy. I could use Zoom to join class from another room, but then I don’t have access to my teacher or my peers. It can be very embarrassing to be stared at when I come into class late and have to move furniture around to fit at a desk. These things are the opposite of inclusion—these barriers are very isolating.
In the last two years I have discovered a lot of barriers that I didn’t know existed. I decided things needed to change so that I could have the same access to education as all of my peers. I never thought of myself as someone who could make changes happen, but there were changes that I realized needed to happen for real inclusion in my classrooms and school community. I did some research and have written two proposals to my principal asking for changes at my school that support true inclusion for myself and other students. I have learned a lot about becoming an advocate for inclusion and equality, and I feel like I’m getting really good at making a difference in other people’s lives.
My first proposal was in Grade 8. There were a lot of people who didn’t understand me and I wanted to make some new friends. I wrote a proposal to my principal to start an adaptive video game club at my school. I wanted to promote a feeling of community, connection, and inclusion with my peers. A community group heard about my proposal, and they bought me an Xbox and all of the adaptive gaming gear I needed for my club! The club has been very successful. I met lots of new people from my school, made some new friends, and some people learned more about me and now understand a bit more about who I am and why school can be hard for me. We are building a sense of community at school and that feels amazing!
By being an advocate, I have learned a lot about myself, I’ve gained confidence, and I’ve realized that I want to help people. I want to help people with disabilities have the confidence to speak up, but I also want to help my community change how they think about challenges and barriers to inclusion.
In Grade 9, I had some health, safety, and accessibility concerns. I wrote another proposal to my principal asking how I could help them make changes at my school to give me safe and fair access to my classes with the goal of making my life easier at school, but also to make things easier for future students here and hopefully at other schools in Kamloops. Now they are aware of physical accessibility challenges with the portable ramps, they are looking at getting more automatic door buttons, and the principal even asked me for input about the height of the water-filling stations and if they were too high for someone in a wheelchair. They also now understand the need to shovel or plow the door that the bus drops me off at because it’s hard for the bus ramp to come down to get me safely off the bus when there is snow in the parking lot. Plowing and sanding wheelchair accessible doors has to be a priority when it snows.
It’s not fair asking people with disabilities to point out the barriers to inclusion and access. The people in charge, and society in general, should be more aware of problems and challenges for people with all kinds of needs, but I also understand that they don’t have the same experiences that we have. I had to become an advocate for myself and other people to help my community understand how hard people with disabilities have to work to have equal access. I just found out that Kamloops has an event called An Amazing Race to Inclusion where teams do tasks that help people to understand the barriers and challenges that people with different abilities experience every day. I have a team of friends and I have challenged the admin at my school to participate to have fun and to gain a new perspective on inclusion and accessibility.
By being an advocate, I have learned a lot about myself, I’ve gained confidence, and I’ve realized that I want to help people. I want to help people with disabilities have the confidence to speak up, but I also want to help my community change how they think about challenges and barriers to inclusion. You can start making changes in small ways and affecting a few people at a time, but if those changes grow, even slowly, then more people begin to understand, and changes start to happen naturally.