My Disability Activism - Part 2

by Jared Wayland

This is the second part of Jared Wayland’s two-part series on disability activism. You can read part 1 here.

As I’ve written about previously, I feel that one of the most important things I can do as someone living with a disability is to share my experience with others. While it took me a very long time to become comfortable in my own skin enough to share my lived experiences, I am very glad that I took that leap!

In 2019, I shared my story with a local Niagara newspaper in hopes to bring some much needed attention to available treatment for Spinal Muscular Atrophy, and the troubles I was having gaining access to the treatment. This article is what really got the ball rolling in terms of my disability activism. The article was released and people seemed to take interest - in fact, it was one of their most shared stories of the year! I was hearing from people all over Canada telling me about how they could relate to my story or how glad they were that I shared it, and shortly after the paper requested a follow up article.

It wasn’t long after both of these articles were released that Muscular Dystrophy Canada approached me to ask if I would be interested in speaking on a panel at their upcoming national conference in Toronto. Given the positive feedback on the previous articles, I jumped at the chance to share my story and journey with the entire Canadian muscular dystrophy community and supporters. My fiancee and I ended up speaking about my experience as an adult living with muscular dystrophy and the role she plays as not only my partner, but also my primary caregiver. Again, I was overwhelmed by the response, and it was then that started to feel as though I was part of something bigger - that I was giving back to the community that had given me so much support without me even realizing it. Speaking at this conference kickstarted my amazing relationship with Muscular Dystrophy Canada that I still have to this day. This past November, I was asked to be one of the hosts for a day-long virtual conference about living with a neuromuscular disease and the transition to adulthood. This was such an amazing experience for me to connect with so many new people who were dealing with many of the same things that I had experienced during those difficult years from teen to adult.

Fast forward to present day, and my inbox is consistently filled with requests for speaking engagements or partnerships related to my disability. I try every chance I can to fulfill these requests and bring as much attention to disability-related issues (often specifically related to Neuromuscular Diseases) that I can. This past month in conjunction with Rare Disease Day, I was fortunate enough to combine TWO passions of mine - disability activism and pizza! A local pizzaria approached me and wanted to know how they could help - so I created a pizza for them based on a family favourite, and for the entire month of March, they donated $8 from every pizza to Muscular Dystrophy Canada. Great eats for a great cause!

I am extremely grateful to have a platform like Quantum Rehab gives me, so that I can share all of these experiences here, and to continue to give people a glimpse into my Life At iLevel!