Find your mirrors

The first step to loving your disabled identity

I’m disabled.

That’s been true for over 20 years.

And yet, it’s only in the last four that I’ve been comfortable describing myself that way. That I’ve claimed my spot within the disability community. That I’ve made friends with other disabled folks. That I’ve taken on the mantle to advocate for — and build community with — disabled friends.

So, what changed?

There is actually a pivotal moment that led me here, believe it or not. And it was one of rage and discomfort. Had it not happened, I’m not sure if I’d be here, writing this piece, looking back on the last few years of building this space.

Then again, maybe I was primed for a pivotal moment. Maybe, finally, enough time had passed and I was ready to shift how I related with my disabled body, my disabled identity. Maybe I was ready to open my world up to a different perspective — one that didn’t rely on me hiding things, or making my needs smaller to make other people more comfortable.

What actually happened was that I was three months into a new job, and the ops team decided that it was a good idea to plan a company-wide beach volleyball event at a sandy beach that I wouldn’t have been able to get around in independently.

(If you weren’t aware, sand is public enemy number 1 for wheelchairs. Followed closely by gravel.)

When I raised this concern, they responded saying “Oh, but there are beach wheelchairs at the venue!”

My heart sank.

A beach wheelchair — seen here — is more like a recliner with big inflated wheels. Yes, it gets the job done in the sand, but it is not at all self-propelling.

So in that response, they were suggesting that I:

A) Transfer out of my own wheelchair and leave it goodness knows where at a venue I didn’t know.

B) Entrust my colleagues with moving me around the space — colleagues I had only started getting to know.

C) Rely on these colleagues to get me places, including wherever we would be eating food and the restroom.

I still cringe at the thought of it.

The thing they also didn’t address in their response, which to me is even more important, was that even planning the event was exclusionary.

What do you mean you have a visibly disabled employee and you’re planning an event around a sports activity that they can’t participate in?

And even if you didn’t, why plan an event around something that could be exclusionary to folks who haven’t disclosed their disability?

I was furious. At the response. At the fact that I had to say something for it to be recognized as problematic. And because no matter where I worked, there always seemed to be a version of this exchange.

I quit that job shortly thereafter, and for the first time, one of the biggest reasons was that I didn’t feel like my access needs would ever be fully (or even partially, really) cared for.

Leaving ended up making me reflect on everything else I had been through at other jobs. The covert ableist comments, the lack of accessible infrastructure, the not feeling that I had space to raise any concerns, the praise when I pushed through my discomfort to still show up as a good employee.

It also made me realize how few people in my life actually knew what I went through. I never thought that it was something I could (or should) unload. Or, rather, I felt like it was so par for the course that it didn’t merit raising.

The spark to start Seated Perspectives came from there — from the desire to teach the non-disabled folks in my life what it meant to navigate life as a disabled woman and wheelchair user. But getting started also gave me the permission to start following and connecting with other disabled folks, which I hadn’t done at all in the 16 years since becoming disabled.

Wild, no?

But also, not really. Because to me, becoming disabled when I was 14 and going to boarding school very soon after, where the goal above anything else was to fit in, the safest thing I could do was to stay distant from my disabled identity and the community that would have nurtured it.

The only way I would ever find my way into it was by making an intentional choice. And what a great choice it was.

Following other disabled women, getting to know their stories, reading their work — all of this reflected my own stories back to me in a way that I had never had access to before.

I distinctly remember the first book I picked up in this process: Sitting Pretty by Rebekah Taussig.

So many parts of Rebekah’s stories were mine, too. They resonated deep in my bones as something true and core to who I am. The parts of me that I myself didn’t share because I had no one to receive them. Or so I thought.

It was a deeply revelatory experience. I cried more than once as I read it. Because for the first time, ever, I felt seen and understood.

I felt camaraderie with another human being in the deepest of ways, because we had shared experiences.

And no one had shared those experiences with me before.

So now, when people ask me what advice I would give to my younger self if I could, or what advice I would have for someone who is newly disabled, it’s simple.

Find your mirrors.

Find the people who will tell your story back to you.

Learn early that you are the furthest thing from being alone. There is a whole community out there of people who have been through the same things, who have already solved the day-to-day challenges, who have unique and inventive ways of doing things, who completely understand what you’re feeling and why — and who won’t judge you for feeling it.

And the thing is: you will need to seek this out yourself.

The way the world works now makes it very easy for us to believe that we are alone and that we need to navigate the hardships and “overcome” on our own to be worthy.

That’s supported in common discourse, how people view disabled folks, the narratives around disability, and who and what stories the media chooses to showcase.

There’s a reason I was able to keep it up the way I did for 16 years…and a reason I can look back on it and call it survival.

Now, all I regret is that I didn’t look for my mirrors sooner. But I’m so glad that I did it, even if it was late.

Part of why I’m building the Disabled Joy Collective is to facilitate this finding of mirrors. Yes, it will be a place centred around sharing and celebrating disabled joy, but also centred around the knowledge that being able to see and connect with other disabled folks that get it is a huge part to creating disabled joy.

If you’d like to get on the waitlist, the link is here. Being on the waitlist means you’ll get updates over the next few weeks and early access when doors open at the end of the month.

The first 150 folks who join are also going to get reallyyyy cute stickers in the mail.