Discovering the benefits of my situation

What's better than having your own confetti cannon legs? You and your partner both have them! One of my friends suggested that this could be a scene at the end of a fairy tale. That's the kind I want to read. (Michael East Photography)

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Happy 2020!

It has been so nice to be in Kingston for the past month with no travel. The holidays were low key and exactly what I needed.

I am not one for resolutions, but I do appreciate time to set goals for the coming months. This year, I want to focus on continuing to advocate for myself and for the disability community. I want to do this through speaking up for myself, saying no to things that I don’t really want to do, saying no to people who want me to work for free (pay disabled people, other marginalized people and artists!). I will also continue advocating through international travel to deliver performances, talks and my course about coaching movement-based practices in an adaptive way. I have heard the term radical inclusivity/accessibility, and that is what I am striving for. It involves going beyond simply obeying accessibility “laws” (that were likely written by non-disabled people). It involves asking disabled people what they need and including them in everything.

Part of what I have been doing over the past month is running Kingston Circus Arts and preparing for our annual student showcase. I am committed to inclusive performance, so here’s what we have lined up for Feb. 8: aerial silks, trapeze, aerial hoop, rope, juggling, partner acrobatics and more. Renee McKinley is doing ASL interpretation, and the whole show is enhanced for blind and partially sighted audiences. We are offering a touch tour at 6:15 p.m. The venue is wheelchair accessible and it will be a relaxed performance in that you are free to talk, make noise, move around, etc. The lighting and music will not be high intensity. It’s an all-ages show and the suggested price is $15 for the event that gets underway at 7 p.m. at 1377 Midland Ave., Unit 460.

On another note, I am starting to think about a future project that involves dissecting an art form that, in my opinion, is extremely ableist (discrimination in favour of non-disabled people). I won’t get into too much detail yet, but suffice it to say that telling disabled people that their bodies are disfigured and ugly (and this is one of the least offensive parts of it) is absolutely not OK. The fact that this is happening today … in 2020 … and that some people who teach this (and do not consult with disabled people) are thriving, is really quite disgusting. This is leading to a permeation of ableism in society.

Fairy tales are also a culprit. This was brought to my attention recently. Think about how every disabled character in a fairy tale is either considered “hideous” or is evil. What is that teaching kids?

And then there is television. Non-disabled people play disabled roles all of the time. This means no work for us, and it means that our stories are told through a non-disabled lens.

If so many of the ways that we take in information are telling us that disability is bad, we can’t help but be influenced by it! This is what I want to see change in the coming year.

What can we do? Involve disabled people in everything. Ask us to be in your show, your project, your anything. Giving us space to tell our own stories of disability rather than non-disabled people sharing what they think it is needs to happen. It is the only way that we are going to be accurately represented. Having a non-disabled person pretend to be disabled needs to be a thing of the past. There are so many talented disabled people who can tell their own stories, why not hire them and help to change the narrative?

At the time of my accident, I wanted to die. I thought that using a wheelchair was the worst possible thing that could happen. I was ableist and I didn’t even know it. I had built up stories that came from the information I received from the world around me that told me that disability was bad and to be feared/pitied. I had a much harder time accepting my situation because of this negative narrative around disability (and nearly took my life because of it).

Disability happens to all of us at some point if we live long enough. So why not tell the truth about it? Everyone’s experience is different because we are unique. I personally am thriving and have discovered many benefits to my situation. I have connected to a community of people who all experience life in a society in which they are an afterthought at best. Let us change the script so that when it happens to you or those around you, it’s not so unnecessarily difficult like it was for me. We find ways to adapt and with society on board and including us, it will get easier and easier.

Thanks for reading! I would love any feedback, questions and comments!

On a lighter note, here are a few silly moments that happened recently:

“You might be an amputee if …

You hear: “Your foot made a funny noise and I think it might come off.”

You might be an amputee if …

You ask: “Foot on or off for this photo?”

You might be an amputee if …

You hear: “This is the only place where it’s normal to find feet lying around all over the place.”