My Disability Activism - Part 1

by Jared Wayland

It took me a long time to become comfortable enough talking about my disability. I am 33 years old now, and I really didn’t start talking about it openly until about 3-4 years ago. Though I have been living with Spinal Muscular Atrophy III my entire life, it started to show itself around the age of 13. As you can probably imagine, this came as quite a shock to have been diagnosed at such a young age with a life-altering progressive disease. Early on, I did whatever I could to almost "hide" the fact that there was anything different about me. I avoided using mobility aids, as I felt they made me look "more disabled," I avoided talking to anybody about my disease or experiences, and just tried to continue on with my life as "normal".

The years between diagnosis and age 29 were tough. As my SMA progressed, it became necessary for me to start using a single-point cane, and eventually using a wheelchair or scooter for longer distances and more unsteady terrain. Again, I didn’t like using these mobility aids. I guess it made me feel like I stood out or something, and looking back at it, I guess it did - and I think those years between adolescence and full-blown adulthood were the catalyst for what I try and do today when it comes to disability activism.

In September of 2017, I was walking in my bedroom (without my cane because I thought I didn’t need it) and I fell and broke my tibia and fibula. To make a very long story short, I spent the next 6 months bedridden, in and out of hospitals and rehabs - and the injury left me no choice but to use a wheelchair 99% of the time. During this whole broken leg fiasco combined with how much I relied on my wheelchair, I started to realize even more so than before just how inaccessible most places are, and how many wheelchair users were treated unfairly in so many different settings. With this in mind, I started to share my experiences in the hospital on Instagram, and people gravitated towards it. It wasn’t pretty, but it was real - and the experiences I was going through were experiences that so many people had gone through, both disabled and otherwise.

In the years that have passed since, I have made a conscious effort to share my experiences living with a disability with as many people as I can. I have been fortunate enough to speak at disability-related conferences, sit on hospital boards, share my story in newspapers and magazines, and even become a brand ambassador for some amazing companies and organizations (including Quantum Rehab!) I never thought that just by showing my daily life I would be able to encourage and help so many others with theirs.

I still have my days where I feel like nothing is going my way and sometimes even question, "Why me?" Why did I have to get diagnosed with this disease? And it took me a long, long, long time to get to this point, but when I have those days, I try to remind myself that I am just like any other person in the world, only I am living with a neuromuscular disease. Stay tuned for future blogs where I’ll go into some detail about the disability activism work I’ve done, and some of the things I’ve been fortunate to be involved with!