Disability Pride and Why It Matters to Me

As readers of this blog know, I was born with spastic cerebral palsy and I was diagnosed with relapse and remitting multiple sclerosis in 2014.

I’ve never known what it’s like not to be disabled. In school, I had a teacher’s aide named Ms. Darch that came with me to all of my classes for elementary and middle-school and up to grade eight. I also had a different teachers aid for my first year of high school.

I would have a study period on my schedule so that I could sit with them and work on my schoolwork. The one that I had for the longest time was Ms. Darch. She was wonderful and was my mother away from home. I could work on my schoolwork with her. She helped me through math homework, showing me how to recognize certain numbers and what they could do.

She took me through parts of language that I didn’t understand. I found having to take Phonics difficult. I was being told to map out a word one way, but I didn’t understand why I couldn’t write it that way. Ms. Darch taught me tricks with spelling. I remember one day that she told me that I could break down words so that I could recognize the smaller words that formed the larger one. The one word I have a clear memory of is the word together. She showed me that I could break down the word together into three small words: to get her.

She would come with me to all my classes and would sit beside me. She would help me with my note taking and took notes of her own so that we could go over everything later. Ms. Darch helped me to memorize the historical facts on the next test, would work with me on my writing and how to structure a paragraph. She even took part in gym classes with me.

I remember during the last year of elementary school, I was particularly upset about the school’s Canadian fitness program that took place twice a year in the Spring and Fall.

Those challenges were so difficult for me. They tested all kinds of physical activity, and I had difficulties with all of them. From what I recall, they had running, jogging and jumping activities and the more points you racked up, the better. You were given a badge at the end of the program that was gold, silver or bronze. Does anyone else remember this?

It didn’t matter how much I practiced, how many stretches I did, how I tried to run faster, jump higher; all I received a participation card. Every damn year. I gave them to Ms. Darch because they were another sign of the fact that I was different. Every other kid got a badge, but I never could manage to get one. It was so damn frustrating. I was trying to prove that I could do everything that I put my mind to, that I could force my body to work like everyone else’s.

 That year, I remember sitting in that auditorium with the whole school. I had a blocked ear that day and couldn’t hear very well and the mic system wasn’t working, so I just made sure to look forward and pay attention. I took in every third word or so. Everyone turned to face me, and I knew that something was going on, but I didn’t know what. I heard the principal say my name and people were congratulating me and teachers were helping me to get to the stage.

I was given a certificate and a bronze badge. I remember being floored, the earth and the room around me frozen in a moment of time and I could hear cheers and clapping. Holding it, I remember looking down at it, the thread shining in the light. People were cheering and I remember crying. Ms. Darch came up to me and helped me back to my spot on the floor. She had sent in all of my participation cards, and they had sent me a bronze badge to celebrate all of my efforts. I still have that badge to this day.

In middle school, there were two other disabled kids at the school with me. There was Denbigh who was severely autistic and there was Michel who had movement, dexterity and walking difficulties. We were given a period together where we would work through different exercises and practice movement. Oddly, with all my issues, I was really good with the balance beam; I just needed help getting up onto it.

During this time, I was taking swimming lessons. My brother and I were taking lessons together at first, but I had to retake almost every level because I never passed the first time. I went up to Survivor level and that was it for me. I didn’t want to disappoint myself every time. My father always got mad at me. “Your brother passed all of his levels the first time. You shouldn’t have to retake every level, Jamie. Why can’t you be like him?”

I remember being so angry at myself. I knew that I didn’t want any special consideration, that I wanted to pass like everyone else did. I could tell when I didn’t pass because the instructor always handed me my results with the blue merit badge. They would hand it to me almost apologetically, knowing how upset I would get. I would usually start crying, no matter how hard I tried not to.

When grade ten rolled around, I told my father and stepmother that I didn’t want a teacher’s aide. I told them that I thought I was strong enough to work without someone helping me. That was part of it, but it was also because I wanted to fit in with the crowd better. The other kids didn’t look to kindly at me having a teacher’s aide. It made grade nine difficult and the other kids were quick to judge. I wanted to transition into grade ten and prove that I could do it to myself and the other kids.

It felt like I was on an island, but thankfully, I had a period of special education every day. The teachers there would help me with my schoolwork, just as Ms. Darch had done. There were lots of other kids with learning disabilities and other disabilities. The island I was on started to fill up. There was always going to be a large portion of the high school population that would ignore or mock us, but we were able to come together in special education to anchor me. To all of those teachers, I am so thankful for you.

I would not have graduated from high school if not for the help I received throughout my schooling. Even with a teachers aide and special education, I struggled, but I did it. I persevered. I was able to find my way through the maze of my mind and my body because I had been given the tools and the tricks I needed to so that I could cope. I didn’t try out for any sports teams, but I did everything on my own. I found a way. Throughout it all, I was never made to feel less than or crippled like I was at home. My father and stepmother made me believe that my disability was something to be ashamed of. At school I wasn’t made to feel like a freak, I was taught that I could do anything. I just had to remember to be proud of myself and not put myself down.

Without the help of my teachers and my mom, I was taught to be proud of who I am. I carry that pride with me today and I know that I’m lucky. There is so much about me to be proud of and I’ve realized that being disabled is part of what makes me strong. I’ve had to fight my entire life and I will continue to fight.

I need to proud of myself and have pride in the fact that I am disabled because the alternative is far worse. I need to celebrate what I can do, even if I have to fight to do it. Disability pride starts with me. Disability Pride matters because if I can’t be proud of who I am and celebrate myself, what is the fight for?

This month, I will celebrate the journey that has brought me here and I will be proud of the work that I’ve done to get here. This month, I will celebrate being disabled and be proud of what being disabled has taught me.