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Up until four or five years ago I was a person who walked everywhere in St. John’s. I didn’t like to sit still very often, so whenever the sun was shining I would find myself walking towards the harbour to spend the day browsing local shops at the top of wooden staircases, sipping on lattes in downtown cafes, and exploring little side streets to take photos of colourful homes. I always did this spontaneously and on my own—just me and my music. I never had to think about where I was going or what I would do. I’d figure that out along the way.
I didn’t know back then that I had hypermobile Ehlers-Danlos Syndrome or that I would be a full-time wheelchair user in just a few years time. I didn’t realize how sacred the memory of those strolls through the city would become to me.
Now as a wheelchair user in St. John’s, I have to calculate almost every move in advance. I can’t just pop into every random shop or cafe I want to visit; I have to look them up first and maybe even call to see if my wheelchair will get in the door. I have to worry about sidewalks and whether or not I will be able to get my chair down a curb cut without breaking it (which has happened a few times). It’s no longer just me exploring on my own because I’m afraid to go out without my husband or a friend. And for good reason. There have been many times when I’ve tried to run errands or just go enjoy my city and I’ve gotten stuck. With every sidewalk crack that my chair brings up in, every step I wheel up to that could be a ramp, every door I can’t open on my own, I joke that it’s all a learning experience.
Sometimes I can shake it off no problem and still have a great day. But sometimes it upsets me and takes awhile to overcome. On those days I usually return home and write a post about what happened for Access YYT, my social media account dedicated to discussing accessibility and disability rights with a focus on my experiences in St. John’s.
Those posts usually receive great engagement and make me feel like I’m making a difference in my own small way. But if I’m being honest with you, I just don’t want my life or my body to always be someone else’s learning experience. I don’t want my day out with my best friend to be a lesson in the importance of accessibility. I don’t want to feel like I have to come home and write a vulnerable post about all of the ways I felt othered, left out, or unsafe in just one afternoon.
Sometimes I just want to go for coffee or a beer. I just want to browse some shops. I want to blend in with the crowd. I just want to exist in the city I call home without having to micromanage every move I make. I don’t want to call ahead for a ramp to be put down for me. I don’t want all eyes on me as my friend tries to haul me and my wheelchair into a candy store. I don’t want to have to map out where the closest accessible bathroom on Water Street is and pick a restaurant based on its proximity to that. I don’t want a stranger to come up to me at the mall and ask me why I’m in a wheelchair because they feel entitled to my medical history.
I don’t want to keep explaining why all of those things chip away at me.
Why would I want my life to be reduced to a series of teachable moments? Why would I want to feel so desperate for change that I continuously share my grief and embarrassment with a sea of strangers online?
Please don’t get me wrong, I will still write the posts. I will sit in front of my laptop and push myself to once again hit “publish” on another story that I cried my way through writing. And I will do it because people tell me that sharing my lived experience makes them care about accessibility. I will continue to put in the emotional labour in order to explain to government officials, city councillors, business owners, event organizers, and anyone else who will listen how they can make meaningful changes that will provide disabled people like me a sliver of access to our province. At times it will be too exhausting so I’ll need to take breaks, but I will always return to advocate some more.
But indulge me for a moment so I can share a dream that I have.
Picture this: we live in a city—a province—that has already considered our access needs. Of course there are ramps, automatic doors, braille menus, and safer pedestrian crossings, among other things. I go out with my friends for a day of exploring St. John’s and I don’t have to hold back tears on a Duckworth Street sidewalk because everything around me is so inaccessible. I just exist in my city the way everyone who isn’t physically disabled does, because the infrastructure is there to allow me to take part in society alongside them. I’d be really happy to wake up someday in a St. John’s like that and to find there is no longer a need for Access YYT. But that honestly feels like a pipe dream at the moment.
I know it will never be perfect. No matter how much advocacy the disabled community does, we will still be expected to make compromises. I will keep hearing excuses when there is no ramp in sight. I will keep telling the city to paint yellow lines on the edge of sidewalks for blind pedestrians and those with low vision, and they’ll likely never pick up a paintbrush. I will continue to find myself sitting at the bottom of steps outside local businesses who promised me they were wheelchair accessible. “We just have the one step and thought that was accessible!” I will still hear them say.
But I would be lying if I told you that things aren’t getting a little better. More people are paying attention now. I’m not saying that’s because of me—there are so many amazing disabled advocates out there (hello, Anne Malone) who are doing far more than I do. The discussion of accessibility feels a little trendier these days. My posts are shared with a large audience now, especially compared to just two years ago. I have a little more hope than I did last summer when I showed up at a pedestrian mall that was being praised for its accessibility and I couldn’t navigate it in my wheelchair.
But things aren’t moving quickly enough. We are incredibly behind and need to build momentum.
You might be reading this and wondering what you can do to help. You might feel like this is a conversation that doesn’t involve you because you’re non-disabled. But I assure you, we need all hands on deck.
We need non-disabled allies who can advocate for us in the spaces we can’t get into. We need you to familiarize yourself with accessibility enough that you can feel confident pointing out something that could be improved, and we need you to address it so we don’t always have to. Follow disabled people on social media. Read books by disabled authors (“Sitting Pretty: The View from My Ordinary Resilient Disabled Body” by Rebekah Taussig and “Disability Visibility” edited by Alice Wong are two amazing books that will teach you so much about disability and accessibility). Amplify our voices. Do something.
Just think, if you simply ask a business to include a ramp or to move some shelves around so a mobility aid user can better access a space, you could be saving someone like me from one more upsetting experience that I’ll come home and feel the need to write about.
And if you’re someone in a position of power in this province, dedicate some time and resources to better understanding accessibility needs and to ensuring that you’re actually doing your part to make Newfoundland and Labrador a more inclusive place for the disabled community. Follow through on the accessibility plans and projects you announce in response to social media backlash about inaccessibility, even when the topic isn’t trending any longer. Be proactive rather than reactive. Actually listen to us when we tell you what we need.
Disabled advocates are out here offering up our lived experiences as lessons for you, free of charge. We’ll continue doing it because our quality of life depends on it, but we’re tired.
Please just take a moment to learn from us.
Lisa Walters is a disability advocate and writer from St. John’s. She is the founder of Access YYT, a social media platform that highlights accessibility and disability awareness in Newfoundland and Labrador.
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