It's a privilege to age

On getting older in my disabled body

I was 14 years old when I became disabled.

Outside of the other patients at my rehab centre, the first disabled person I met was a gentleman who my family knew of that had used a wheelchair for the majority of his life.

He had been injured in a boating accident when he was 12, and had spent the next 48 years of his life as a wheelchair user.

There are only a few flashes I remember of the brief time I spent with him inside my great grandmother’s home.

He taught me how to adjust myself to sit tall in my wheelchair and avoid pressure sores.

He guaranteed me that I’d soon learn how to move around the city on my own. I didn’t quite believe him then, but he wasn’t wrong.

He provided an example of what life could look like after years as a disabled person.

And I was so resistant to it all.

Sitting with this man, who had lived a version of what I was living through right then, I was in absolute denial that I would spend the rest of my life like he had.

48 years in a wheelchair felt like such a HUGE thing to me then, just a few months in.

It was inconceivable.

Then, I was sure that there would be some sort of remedy or cure for my spinal cord injury. That I would be back up and walking in no time, back on track to live the life that I envisioned for myself.

I couldn’t understand (refused to understand, really) that I was in the presence of something pretty miraculous.

This man, first injured in the 1950s in Argentina, had lived a full life as a disabled man. He had experience the absolute privilege of aging with his disabled body, despite all the odds that were stacked up against him.

It’s been 20 years since I met him. And he has since passed on. And I think it’s only recently that I’ve fully embraced how much of a gift it is to age in this body.

Because the truth is, as much as I would love to stay in denial about it, my spinal cord injury has potentially reduced my life span. My body is at increased risk of sores and infections, dangerous blood clots, and can be more severely impacted by illnesses that only mildly affect non-disabled folks.

This is true for so many disabled folks, in whatever experience they have with disability. Being part of this community means being witness to beautiful lives that are cut far too short. It’s heartbreaking.

And sure, I could hold this in a place of fear and resentment. I could wallow in the sadness of it — that feeling that I won’t get to see everything I want to. (Sometimes that feeling does enter my chest for a little while.)

But I’m starting to see it as more of an invitation.

An invitation to take care of my body so that it can be here as long as possible. So that I can be present in this life that I love. So that I can continue to witness life’s beautiful moments, but also fully feel the excruciating ones, and share those with my people.

I see it as an invitation to get stronger. To moisturize my skin. To enjoy what I eat. To wear the clothes that feel good. To choose people that fill my cup.

Basically, it’s an invitation to live fully (in the way that’s true for me) for as many years as I have left, with my community.

I’d love to hear from you if you’ve felt the same, at any point, or if you have your own thoughts on the impermanence of living in a disabled body. Let me know in the comments.

PS: As part of this journey to make the most of this life I do have, I’m building an online community space focused entirely around disabled joy. It’s called the Disabled Joy Collective and you can join the waitlist here.