My name is Ryan Lythall. This is my first column for Ottawa Life Magazine, so I wanted to introduce myself. My story is a bit different than most.
In 1975, I was born with a rare Neuromuscular condition called Nemaline Myopathy. NM causes muscle weakness, speech impairments, and respiratory problems. For me, I have all three characteristics of Nemaline Myopathy.
When I was six months old, I was at home when I suddenly stopped breathing. My Mom rushed me to the Childrens Hospital Of Eastern Ontario. The Doctors and Nurses worked hard to save my life. Soon afterwards, the decision was made to cut a hole in my windpipe to insert a Tracheostomy Tube. Another tube is connected to it, which connects to a Ventilator. A Ventilator is a machine that pushes air into your lungs. I still use it at all times.
Back then, very little was known about Nemaline Myopathy. After several tests were done, the Doctors gave my Parents a grim outlook. They were informed that I would only survive a year. Clearly, the Doctors were wrong.
Nobody knew what to do with me, or where to put me. My parents weren’t able to look after me, and back then, wheelchair accessible housing didn’t exist. So, it was decided that I’d live at CHEO for the time being. That time being turned into nineteen years. From 1975-1994, CHEO was my home.
When I think about my time there, I have mixed feelings. The staff treated me well and made sure that my life was as “normal” as possible. I had all the best toys of the 80s, and I made tons of friends. My family visited often, and eventually, I was able to attend school away from the Hospital. One of the downsides of living in a hospital though was losing a lot of friends due to medical reasons. I’m thankful for CHEO. Without them, I wouldn’t have survived.
When I was seventeen, talk started about where to put me next. I was getting too old to live there. Higher-ups approached me with two choices. The first option was to send me to a long term care Hospital, and the second option was to have me live in a group home. None of those choices appealed to me. So, I chose a third option. I wanted to live on my own, in my own place.
The following two years were spent writing, and delivering letters to politicians at all levels of government. My goal was to prove that it would cost less for me to live in my own place instead of in a long term care setting. The other issue was that I needed to have 24/7 care, mostly due to the fact that I require a ventilator.
I don’t recall the exact day that I found out that I got the green light, but I’ll never forget the day that I left CHEO, and moved into my own place. The date was March 16th, 1994. CHEO threw me a party.. My mom was there, as well as some of my friends, staff, and a few media outlets.
When I first moved out, I was extremely nervous. I no longer had the safety net of the Hospital. After a while though, I adjusted, and have never looked back.
After living, in what felt like a bubble for nineteen years, I felt like a stranger in a new land. In some ways though, I still felt confined.
As I started exploring Ottawa, I noticed that there were places and events that I couldn’t attend due to barriers. Many places weren’t (and still aren’t) wheelchair accessible. I remember wondering why it was like that, and that something had to be done.
My first big project was convincing Bluesfest to install a platform so that people using wheelchairs could see the shows, at least on the main stage. Since 2010, the platform has seen a steady increase in people using it.
In 2018, I decided to run for Mayor. My main platform was to improve wheelchair accessibility, as well as to make public transportation truly accessible to all. Even though I didn’t win, I did manage to get 1115 votes, and I brought further awareness to the issue of wheelchair accessibility. My fight still continues.
In September 2019, I started writing a monthly column for Centretown Buzz. Each month, I write about wheelchair accessibility and issues related to people with disabilities. I also often attend Transit Commission meetings at City Hall, and I’m a member of the ParaParity group. ParaParity is a group that is trying to get the same level of service on Para Transpo as OC Transpo riders receive. I will explain that further in future columns.
Speaking of which, I’ll be writing here about similar topics, but more in-depth, and more frequently. I’ll also be discussing current events and how it relates to people with disabilities, and much more.
If you have a topic in mind, or you just want to reach out, or give me feedback, I’d love to hear from you. I’m very active on Social Media. You can reach me on Twitter at @rolling_enigma.
