The Nightmare Wait for a Wheelchair
Editor’s Note: This blog post was written by Tom Landy in March 2024. Since then, the Manitoba government has announced new funding for the Manitoba Wheelchair Program. By sharing his story publicly, Tom helped bring much-needed attention to the critical issue. His story highlights the complexity of procuring a specialized wheelchair in Manitoba. Tom’s wheelchair is set to be complete in the coming weeks.
It's weird, but whenever I sleep and have dreams that I can remember, I'm never actually wheelchair-bound, despite being confined to one since I was about two years old. As I was born with a rare degenerative illness called Spinal Muscular Atrophy, I couldn't walk at all or sit without support for long periods. While my hands and arms did have some mobility in them when I was younger, I didn't have enough strength to push a manual wheelchair myself.
I don't recall how it happened exactly, but in 1980 when I was only four, I became the youngest recipient of a motorized wheelchair in Canada.
That wheelchair just became a part of me, most likely because I was so young. It was second nature to me almost instantly and I didn't think about it all that much. I went to regular schools and even though I was different than the other kids, no one treated me like I was or if they did those instances were very few and far between. Most people thought it was cool since they had never seen anything like that. Sometimes it was an advantage, even, as I was one of the best goalies in street hockey or handball around mainly because of my sheer size compared to the other children until they got bigger.
For a variety of reasons from body changes to outdated technology to general wear and tear, wheelchairs must be replaced every so often. My first chair is long gone now, and I've had a few since then. As my condition deteriorated, my current chair started becoming so uncomfortable that I could only sit in it for maybe an hour or two tops. It was also getting difficult to find parts for my model.
So, in 2019, both myself and my occupational therapist (OT) knew it was time for a replacement and I embarked on another journey for a new wheelchair.
Having been through this process a few times in the past I kind of knew what to expect - or at least I thought I did. An application for the wheelchair has to be filed by a medical professional. Funding has to be requested for expensive pieces of equipment. Several meetings are necessary to hash everything out and to ensure the modifications all come together at the end to benefit my overall health. I'm well aware that this is not something that happens overnight. However, I wasn't expecting the absolute nightmare that would follow - and continues to this day.
Before I get into that, though, let me first say that I know that we had a COVID-19 outbreak in the middle of all of this and that slowed normality down to a crawl. In-person meetings were postponed to reduce contact. I get that. But during this pandemic, many of us also adapted by working from home, video chatting, etc., to still keep things going. Unfortunately very little of that happened in my experience.
I was notified on February 9, 2022, that the application for my wheelchair was "officially submitted". That's right, we're talking two years later. I still have no explanation as to why it took this amount of time just to file paperwork for a wheelchair, especially when one would think that that isn't something that would be held up by a worldwide health scare.
The severity of my illness has also left me pretty much a quadriplegic now. Even though I still have feeling everywhere I can barely move on my own anymore and that means I need specialized equipment. I have to drive my wheelchair using a sip-n-puff mechanism where I blow or suck into a straw-like device to maneuver my chair around. Devices like this require additional funding. Not only did they make me take a "driver test" to get the product when I'm very familiar with these units as I've been using similar ones for over 25 years, but it took another year for that approval to go through and finalize the wheelchair order.
There is often some debate whether said equipment is an absolute must-have or not and I find that mind-boggling, to say the least. If an OT or doctor says a physically disabled person needs a specific piece of equipment to improve their well-being, that should be it. End of story. Questioning the validity of a request and making the recipient jump through hoops for no reason only causes more delays.
There is so much more red tape I had to go through (and still am) that I just can't cover it all here, as I am limited by word count. But after taking my story to the news last summer hoping for change, I was so disheartened that very few seemed to even take notice. One positive is that Manitoba Possible did contact me personally almost immediately after being in the press offering help to provide me with a wheelchair, but that wasn't the problem. Manitoba Possible had already promptly approved my wheelchair order once it got to them a couple of months prior. And just recently the government gave them more funding to expand their department, and I am happy about that.
But that's a small drop in the bucket and more needs to be fixed. A lot more.
When I think back to my childhood and young adulthood, I felt that there was a good system in place and that the people working within it to help people with disabilities genuinely cared. If you asked me how I feel about that now, I would say that the system is severely broken.
We are supposed to be living in an inclusive society, and to be honest, I have never felt more excluded or neglected in my entire life. It shouldn't be this way, but it is a harsh reality.
I believe we need advisors who have first-hand experience being severely disabled. OTs have training and are very knowledgeable in many things, but they haven't been in our shoes. If a disabled advisor was brought into the loop to say what works and what doesn't, I think this would do wonders. Not only that, it would provide employment to those who have a very hard time finding jobs.
Although I do have my new wheelchair now since last September, it's sitting in the corner, aging. I still can't use it until the seating contractor makes it usable for my unique body structure and that won't be until the summer if I'm lucky. Mismanagement, lack of organization, poor communication, and more are all contributing factors to that.
The part of me that made me mobile has been missing for four-plus years and I'm sure feeling it now.
About the Author
Tom Landy, born and raised in Winnipeg, is a passionate advocate and writer with a love for movies and board games. He shares his home with a mischievous Morkie named Chewie, who has more than lived up to his name by chewing through countless shoes