Disabled Joy

“I think I’ve learned to adapt.”

I was sitting in the kitchen with my husband cooking dinner last night when I said these words.

I’ve adapted really well to life post transplant.

“I don’t have days where I wish I wasn’t disabled,” I said, “I have many days where I wish the world wasn’t so ableist. I’ve adapted, and the world continues to deny my strength.”

A person I follow on instagram posted this morning, in an entirely unrelated context, why we focus so much on how we adapt and move through the world and the differences we all have, and why don’t we just let kids be kids? Why don’t we just let people be people?

I live in a world where the ways I move and exist in the world aren’t widely accepted. My existence makes people uncomfortable. My existence when I choose not to fit into the role I’ve been handed - the inspirationally disabled, forever grateful transplant recipient - makes people uncomfortable. I’m just trying to live my life, and everyone seems to be getting caught up in the how.

Cody and I watched Quest for Camelot last night. The first time I watched it was give or take 15-20 years ago in the teen room on the pediatric ward of my local hospital. The walls were painted orange, the sofa was oversized and plush, and if I close my eyes I can still smell the unique scent of antibacterial wipes and IV dextrose.

I’ve been thinking about those days a lot these days. Memories come back in flashes and fragments, hazy enough to almost feel like it was another lifetime. And in a way it was.

As I was watching this movie, I found myself unexpectedly getting emotional. If you haven’t seen it, I won’t spoil it but one of the main heroes in the film is blind. This ends up being his strength. It’s not something he has to overcome, or learn to work with throughout the course of the movie. He is the hero he is because he’s blind, not in spite of it.

And as we watched this movie, cuddled up on our very own orange, thrifted sofa, Cody asked me if this blind hero had possibly lended notes to Top: the blind heroine in the animated series Avatar: the last Airbender.

I love seeing really good disability representation in media, and as I reflect on my childhood I realize I was lucky to see a lot of it. Fictional men and women whose disability was their strength, and not something to be overcome.

Living life in a disabled body has taught me new and unique ways to interact with the world. Like how the hero in Quest for Camelot learns to fight by listening to and sensing the world around him, communicating with nature in a way that extends beyond just vision. Like the heroine in Avatar, who uses vibrations to see, which she then uses to bend earth itself. An entire way of relating to the world that wasn’t there before.

When I slow down long enough to really be present in my disabled body, I’m opened up to a new world. The world of Japanese soil, medicine that flows through bears, the microscopic becoming and unbecoming of the rotifer. I experience the world through strangers, plants, animals and fibres. I speak and can move the earth.

It’s a gift I wish I could give to the world who seems to only see disability as existing in one dimension.

Let me tell you about disabled joy…

The way I experience the world now, the deep connection I have to the undercurrent of life, the kinship I have with plants and animals and dirt, the webs I’ve been able to spin because the insight I have from living on the rupture line is one you can’t get anywhere else, it’s something I wouldn’t trade for the world. The ways in which I understand death and life, pain and suffering, becoming and unbecoming, defies language, and cannot be learned through study. It’s a gift.

One I’m repeatedly told is wrong. Because my adaptations make others uncomfortable. Because how I move through and interact with the world doesn’t fit within societal norms, so I must be the one that’s wrong. Because disability has always been defined as something to overcome, instead of the thing that makes a hero.

The body holds the key. Embodiment is the key. Diving deep into this disabled existence is the key.

I could tell you, but then again, would you believe me?