Author: CognizantClay

During the month of September, I had the honour of participating in an event called Squad Up. For those who don’t know, Squad Up is a charity gaming event that allows you to fundraise and raise awareness for Duchenne Muscular Dystrophy by playing your favourite games. It takes place annually in September as it is World Muscular Dystrophy Awareness Month. The event is organized by Jesse’s Journey, Canada’s only charity that is dedicated solely to Duchenne awareness, fundraising and research.

As of September 27th, Squad Up has raised $20,000 for Duchenne research. It’s not too late to donate! The event runs until the end of September. Not only that, you can donate to Jesse’s Journey at anytime. You can do so here: https://www.jessesjourney.com/donate/. Thank you so much to everyone who participated and supported a great cause!

I had the honour of interviewing Caroline Casey. She is one of the leading disability advocates in the world. She is diagnosed with Ocular Albinism. Despite the fact that she has very low vision she is a very determined and confident woman. During the interview we discussed inclusion in the workplace, life experiences and how people can continue to fight worldwide disability exclusion and discrimination.

I left the interview feeling very content. She truly has a way bringing confidence to people. She loves my name and what I’m doing with my blog. She told me how she once kissed a boy from New Zealand named Clayton and she has loved the name ever since. “He was such a great guy. He was a renegade.”

She is very open and honest about the fact that she was part of the problem with disability exclusion. Waiting until 28 to admit that she had a disability was one of the hardest things she ever did. The first thing she did after this life altering choice was go to India to ride an elephant, solo, 1,000 KM across the country. Kanchi was her name. Caroline says that Kanchi was one of the main influences who taught her to accept her flaws. As a result she is the first female elephant handler from the West. She always wanted to be Mowgli from the Jungle Book and was one of her main influences growing up.
The thing that struck me the most about Caroline was her resilience. She has never let her disability stop her. She worked for Accenture for several years before she “came out of the closet” at age 28. The fact that she was able to be “successful” in life before even admitting to herself and to others that she was disabled is inspiring in it’s own right. She was afraid of not “fitting in” which in a nutshell is why she was so afraid to open up about her disability.

She believes that everyone needs to speak up about discrimination against the disabled community. She says that people need to stop assuming things about disabilities. “Ask questions. Use compassion, empathy and kindness. We don’t need to be fixed. We just need you to listen. There is so much more to us than how we look.” She believes the current generation has the power to change the perception of the disabled community. Caroline holds true that her generation did not have the resources that oura does for change.

Her company The Valuable 500, was founded to empower disabled people in the workplace. The end goal is to get 500 signatures from CEO’S of large companies and to get them to enforce policies and agendas that serve disabled individuals.

I will forever be grateful for the opportunity. I recommend checking out her Ted Talk and also her interview with Molly Burke. You will not be disappointed!

I believe everyone has a story to tell. Through empathy, kindness and understanding we can help each other get through the difficulties life throws at us. My goal for my journey is to teach people how amazing the disabled community can be.

My name is Clayton Theriault. I was born at Oakville Trafalgar Memorial Hospital (OTMH) in Oakville, Ontario, Canada on September 13, 1992. I was your typical healthy (or, so it seemed) newborn boy. Soon after I arrived home my parents noticed I was in a state of discomfort. I would squirm a lot and I constantly cry for the majority of the day. Doctor’s originally said I had Colic but my mom wasn’t having it. Between the age of 9 months and a year I underwent multiple tests. First, a CPK (Creatine Phosphokinase) test. My CPK level was 26,000. For reference a normal CPK level is between 39-308 U/L (Units per Litre). I then underwent a muscle biopsy. The biopsy came back positive for Duchenne Muscular Dystrophy.

As a young boy I was your typical Canadian kid. At a glance you would never know I had a disability. I loved the Toronto Maple Leafs, Spider-Man and Winnie The Pooh. Throw in air guitars, apple juice and McDondones (McDonald’s) and singing and you have a pretty “normal” kid. My catch phrase was “Nanks fo dat” (Thanks for that).

Fast forward to my school days. I loved school. I have always been a curious person. My thirst for knowledge was a constant. I spent a lot of my time reading and searching things on the internet. I asked my parents questions all the time. It got to a point where my mom would tell me, “go do a project.” It has been an inside joke since I can remember.

Duchenne Muscular Dystrophy is a progressive muscle wasting disorder. As I got older I began to fall more often. My weakness was becoming more apparent as I got older. I remember at age 7 I noticed it was getting harder and harder to keep up with my friends. It never really bothered me. I had a lot of friends and they encouraged me to keep pushing despite my challenges. They never judged me for being slower than them. My favourite thing to do was play sports. My favourites were hockey, soccer and a simple game of catch. When playing hockey or soccer I would always play as the goalie to avoid fatigue. My friends and I played catch as teams. I was able to catch quite well but when it was my turn to throw the ball I would usually hand it off to someone else to throw it for me.

At the age of 10 I began using a walker to get around. When travelling longer distances I would use a manual wheelchair. At age 11 I got my first electric wheelchair. I loved it. I remember feeling a sense of independence. I was able to go on bike rides with my friends, play street hockey and basically go where ever I wanted.

One day in grade 7 while I was in the washroom I tripped and sprained my ankle. I was used to falling but I knew something wasn’t right. I was in constant pain and I was unable to walk on it at all. After about a month my parents and I knew I was never going to walk again. This is typical with people diagnosed with Duchenne Muscular Dystrophy. I may have only walked for 12 years but I will be forever grateful for the opportunity to run around, play sports and just be a kid.

High school was a whole different ball game. In grade 9 I was quite the shy guy. A lot of my childhood friends had moved away or gone to a different school. I didn’t have very many friends. I started out eating in the cafeteria. To be honest, I hated it. I felt judged by a lot of my peers. This was a very new feeling for me. For the first time in my life I felt ashamed of my disability. After a few agonizing months I began eating lunch with my Educational Assistant, Tom Dykes and some of the other teachers. Mr. Donaldson, Mrs, Campbell and Mrs. Lee. At first I felt like a loser. However, as I got older, I appreciated having a good relationship with my teachers. It made me a much more mature person.

Throughout the 4 years of high school my career path changed four or five times. At first I wanted to be a zoologist. Then, sports management. Believe it or not even becoming a fashion designer crossed my mind. Then one day I learned Mr. Dykes ran a youth column with the local paper, The Oakville Beaver. I always excelled at English so I decided to give it a shot. I wrote an article about NHL goalies in grade 10. I absolutely loved it. Being published in a newspaper wasn’t exactly a new thing. I had been featured before for my work as a youth ambassador for Easter Seals. This was different. Being published for my writing was something I was extremely proud of. I had found my calling, journalism.

After high school I attended Sheridan College from 2011 until early 2013. I was enrolled in the Print Journalism program. I lived in residence at the school and boarded with my friend Liam. Liam is diagnosed with Cerebral Palsy. It was my first time living on my own. Being able to share my experience with a fellow disabled person was amazing. I learned so much about myself. I had more friends than I could count. I still keep up with most of my former classmates on Facebook. There are however three good friends I still talk to regularly and hang out with. Eli, Josh and Imran.

I never graduated from the Print Journalism program. Despite that fact I am so grateful that I had a memorable college experience. The feeling of shame I had in high school went away. I learned that just because I have a disability it doesn’t mean I can’t have a fulfilling life. I also learned how liberating it is to live on my own.

Fast forward to present day. I am the founder of Cognizant Clay. I founded it to raise awareness for the disabled community. I interview prominent figures in the disabled community and others who work with charities and advocacy groups. I believe everyone has a story to tell. Through empathy, kindness and understanding we can help each other get through the difficulties life throws at us. My goal for my journey is to teach people how amazing the disabled community can be.