Life on wheels presents unique challenges when combined with visual impairment, as Monika, living with MPS I knows firsthand. Her journey to obtain and master the use of a powered wheelchair reveals both the complexities of assistive technology and the determination needed to maintain independence.
Obtaining a powered wheelchair proved to be her first hurdle.
“It was quite a challenge getting my powered wheelchair. Because first I was told I was not allowed to legally get one because of my site impairment. We had to contact the Canadian national Institute for the blind and work with my occupational therapist and my social worker to explain that there are tools and techniques that would allow me to be able to navigate.
I had to go through training. Make sure the chair was a good size fit for me and that I wouldn’t damage my back or my neck or my legs. I had to customize the joystick to work with my curved fingers. And then the tricky part was driving it. They helped lead me down hallways to reach a room. In this room there was brightly coloured walls, ramps, and sort of practice sidewalks that you could go on. I followed the instructor who walked a few feet in front of me and gave me vocal cues. We went up and down ramps. Turn tight corners. And I had to go towards a wall and stop before hitting it. We then did a practice run outside.
My mom learned how to give verbal directions. And I had to use my ears to learn when it was safe to cross the street. Listening for cars, bicycle bells, or audio signals from crosswalks. I also use smells as we went by. Like if there was a flower shop, I could smell roses. Or a pizza parlour would have pepperoni and cheese. You must practice counting the number of times you cross a crosswalk to measure the number of blocks you go past.
For navigating around my house – since I’ve lived in the same house for about a decade, I know each hallway and door frame. We put Christmas lights around the doors so that I could make out the big blurry lights and focus on aiming for the middle. We also painted the ramps outside of bright neon orange so I can tell where the edges are. It was a struggle though; I still have to be careful not to fall off of sidewalks or get stuck in drain ditches!
There is a new company called LUCI Mobility. They are coming to Canada next year and they are working on these sensors that you can install on a powered wheelchair. These sensors will automatically stop your chair if it senses you’re about to hit something in front of you. And if you’re about to drop off a sidewalk or a ledge it will stop your chair. This is very for people with either site issues or neurological issues. I’m excited to be able to try these out at a local conference or convention once it’s available.
However, I also had to fight to keep my manual wheelchair. Because here in the Eastern Townships, there’s only a very small handful of stores and restaurants along with public buildings that are wheelchair accessible. I can count them on one hand.
So, they wanted to take back my manual wheelchair in order to exchange it for the powered wheelchair. I told them this was not possible because then I would not be able to take my wheelchair to places like carnivals, restaurants, or local clothing stores. Because each of these places have at least a few steps to get into the building. so unfortunately, now manual wheelchair is mine to keep I will no longer be covered if anything breaks on it.”
While technology evolves and powered wheelchairs become more sophisticated, Monika’s need to maintain both manual and powered chairs highlights a simpler truth: accessibility in the community still has a long way to go. Her experience shows that advocating for accessibility starts with speaking up – whether it’s working with healthcare providers to get proper equipment, contacting local businesses about adding ramps, or reaching out to disability organizations for support. These individual actions, combined with community education, can help drive the changes needed for a more accessible future.