Lessons I’ve learned as a newly disabled person

I have arthritis. 

Osteoarthritis to be more precise. For those who don’t know, osteoarthritis is a type of arthritis brought on through the wearing down of cartilage in one’s joints, usually because of some type of injury or repetitive movement.

In my case, two things in particular led to the development of my arthritis: one leg being shorter than the other and flat feet. And not properly being able to afford proper treatment (both my parents, and later, me) for most of my life accelerated the degeneration of some of my joints.

I first started experiencing joint pain over 30 years ago, when I was 20 years old. It first started manifesting in the ankle of my shorter leg when I was on my feet too long. Luckily, I’ve had desk jobs for most of my working life, although I have worked in retail, as a gas jockey, as a carpet cleaner, and as a delivery driver. Working at a job where I sat most of the time helped to slow the degeneration of my ankle joints.

However, unbeknownst to me, during the same time, the cartilage in my knees had been deteriorating over the ensuing decades, mostly because my flat feet had forced my knees to accommodate the lack of arch support. Carrying excess weight for several years didn’t help either.

A year ago this month, I was in an accident that threw me off a scooter and my right knee slammed into the ground. The attending physician at the emergency department I visited later that day said after viewing my X-rays that I had hardly any cartilage in my knees and I had shattered what little cartilage that was lingering.

The next month, I had a similar accident, but this time, my left knee hit the ground first.

I went to a physiotherapist and an orthotics specialist for treatment. I got brand new orthotics to replace the 13-year-old ones I was still using. And the physiotherapist told me that I had to avoid any activities that cause knee flexion (bending), such as squatting or kneeling. I also needed to avoid high impact activities, such as jumping or running, and was to avoid carrying heavy loads.

My knees now make it difficult to walk long distances, stand for long periods, or drive on long road trips. Wearing knee braces helps somewhat, and I carry a portable, collapsible stool with me if I’m going to be somewhere where I need to wait for something but there will be nowhere to sit.

For example, at this year’s Pride Parade, I brought my stool along so I had somewhere to sit while we waited at the staging area for half an hour before the parade started. I wore my braces while I marched, and I used my stool several times at the party and the park as I waited for my family to check out various activities there. Even then, I was pretty sore by the end of the day

When my parents came out to attend our oldest child’s wedding, they brought a transport wheelchair with them that they had in storage. As of this writing, I’ve used the wheelchair 5 times in the last 2 months. 

I also have been dealing with some head issues since March, which result in my having a headache, dizziness, or lightheadedness every day for. the last 6 months. Which makes it difficult to bend over, which I need to do since I can’t squat to pick stuff up.

My injuries and head issues, in combination with asthma, scoliosis, and kyphosis, have made it challenging (although not impossible) to live a normal life. 

When I planted our garden, for example, this year, I had to plant over the course of a week, rather than in just one afternoon.

And over the last few months, as I have moved around the world as a newly disabled person, I’ve learned a few things.

First, Lethbridge Transit sucks for disabled people. The seats are not designed for people with back issues and there is not enough room between rows for people who are tall and can’t bend their knees. Trying to make connecting transfers on a system where buses don’t wait and you can’t run is tough. We also have less seating at bus stops.

Last month, I took the bus grocery shopping on Heritage Day. My normal bus was not operating, so I had to catch a different bus, but their on-time performance is pretty bad since they redesigned their routes. I had to wait 30 minutes for my bus home. There was no bench at the bus stop where I was waiting, even though there used to be. Rather than standing for 20 minutes, I chose to walk to another stop to see if they had a bench. The place I thought of also lost their benches, so I had to sit on a retaining wall. That was the day I started bringing my collapsible stool with me every time I went shopping.

Second, roads in Downtown Lethbridge are not designed for wheelchairs, even for crossing. There are many crosswalks where the transition between the roadway and the curb is quite uneven; I’m talking about the ones with curb cuts as well. These require leaning back in the wheelchair to get the front wheels up while also propelling it forward in order to try clearing the lip. And that’s not including the various sidewalk cracks and potholes that make using a wheelchair uncomfortable.

Third, there are a lot of places that are not that accessible to wheelchairs. Mary and I visited the Southern Alberta Art Gallery for Free First Fridays last month, and honestly, the experience there was pretty good. The access button for the front door was easy to use, the threshold of the front door was pretty smooth, and there was lots of room to manoeuver in the building, in both the hallways and the exhibit spaces. The elevator to the second floor was also easy to use.

Take my church, however. They do have access buttons at some of the doors, and the hallways are pretty wide, except when they’re filled with people between meetings. There is no way to get a wheelchair up to the podium though in the main worship space; although they do have a wireless mic to sort of accommodate that. All of the washrooms have doors but none of them have access buttons to open them. You have to open the door manually while also trying to get your wheelchair inside, and two of the washrooms have two doors to get through.

A local comedy club we attended this summer is located downtown but is in the basement. There is no way to get a wheelchair downstairs. Even if you could, it’d be difficult getting around the tables and seating. It wasn’t too bad getting downstairs once we got there, but climbing those stairs afterward were a bit of a challenge.

When we drove our 21-year-old to Winnipeg to attend school, we stayed at a hotel in the south end. There was no access button to open the door to the lobby, there was a lip between the parking lot and the threshold of that door, and there was no elevator to the second floor. Even if you managed to get a wheelchair into the building and stayed on the first floor, you couldn’t navigate it around the seating in the breakfast area in the mornings.

Or how about LCI, the high school where our 14-year-old attends. We visited the school last night for the Meet the Teachers night for parents of Grade 9 students. There was only one accessible entrance into the large gym, where the event was being held, and there was only one accessible entrance into the building to get to that gym entrance. The parking lot near that entrance is staff parking only, so we had to park on the road and Mary had to push my wheelchair through the parking lot to get to the door. I pressed the access button, but the door wouldn’t open. Turns out that the only accessible entrance was locked. Luckily, someone eventually saw us out there and let us in, but we were late to the meeting because of it. Once inside, there was nowhere designated for wheelchairs and trying to navigate in the narrow aisles to find somewhere to situate the wheelchair was a challenge, especially as people were trying to slide past the wheelchair in the six inches between me and the hard, wooden seating the school had set up. Eventually, we found a spot by the audio–visual area that had been set up for the event. After the presentation, they situated the teachers around the gym, most of which was occupied by the seating. This created tight crowds around the perimeter as people were trying to get to the teachers. When you’re able-bodied, you can just slide sideways past people. You can’t do that in a wheelchair.

Which brings me to the fourth lesson I learned.

I became invisible to a lot of people last night at LCI. People lining up to meet the teachers didn’t realize that I was in line waiting to meet the teachers, so we ended up having to wait longer. As well, most of the teachers primarily spoke to Mary. After I noticed this, I tried to be a bit more assertive to make sure I was included in the conversations.

When it comes down to it, honestly, the entire idea of inaccessibility is one of invisibility. Disabled people are often invisible to too many able-bodied persons and so spaces and meetings aren’t designed with them in mind.

The fifth lesson I’ve learned is that some people don’t believe I’m disabled. I’ve had so many people express shock seeing me in a wheelchair when they last saw me walking. I had one person doubt my need for a wheelchair because they saw me post a photo of myself in which I was standing.

One final lesson I’ve learned is that the workforce is designed for able-bodied persons. It’s not designed for people who can’t be on their feet for long periods, who can’t bend their news or carry heavy loads, or who can’t sit for long periods. Especially if those people are 50 years old. Employers want young, able-bodied people, and the disability benefits that are available pay a pittance, which means that disabled people either need to take a job that worsens their condition, live in poverty on government benefits, or become self-employed (and all the precarity that comes with that).

Oh, one more thing. I think it’s ridiculous that extended health insurance plans cover transport wheelchairs but not self-propelled wheelchairs. A self-propelled wheelchair would allow me a lot more freedom and autonomy when I do use a wheelchair, but they’re so expensive that I’ll need to save up for one.