How disabled is disabled enough?

We all deserve community.

The other day, I was talking to a friend about how she relates to the disability community — or, rather, how she doesn’t.

She has had a chronic illness for over five years now, and she weaves in and out of feeling disabled depending on whether or not she has a flare.

This is what she said to me:

“I often find myself dancing in between “ally” and part of the disabled community and struggle with it a bit because my body doesn’t “look” disabled. And so, [the disability community] is often a space I feel like I don’t have a right to.”

Because her chronic illness isn’t always present and “disabling,” she doesn’t feel like she has a right to claim space within the disability community.

She doesn’t feel like she can claim that identity, at all.

Even though her chronic condition does disable her (which is really the only definition).

When I told her about this community space I want to build for disabled folks — the Disabled Joy Collective — she asked me if I would feel ok with someone who has a dynamic disability joining.

That broke my heart a little. Because having stayed away from the disability community for such a huge part of my disabled life, I know how incredibly lonely it is to navigate you disability on your own.

It’s lonely and it’s exhausting. And the very best cure for that is community.

While she acknowledged that part of this feeling was likely due to her own internalized ableism and understanding of what it means to be disabled, it got me thinking.

As much as disability stereotypes harm people who are perceivably disabled, they also harm disabled folks that have chronic illnesses and “invisible” disabilities.

They also harm those who are temporarily disabled, and those who have yet to become disabled.

Society’s narratives around disability tell us that disability has to be these things to be “valid,” It has to be perceivable, tragic, incapacitating, permanent, and something that needs overcoming in order to participate or succeed.

Alternatively, it needs to be inspirational.

And if you’re disabled but don’t tick all those boxes, it’s more likely that you aren’t going to be comfortable (or interested in) adopting that identity.

OR, even if you are comfortable, you come up against systems and policies and people that tell you you aren’t disabled enough.

So where does this leave people who don’t fit the commonly held understanding of disability?

Often, they convince themselves they’re not actually disabled, and don’t seek the support they need. They put their heads down and navigate it on their own.

They also miss out on the opportunity to be part of this amazing disability community filled with stories, shared experiences, and resources.

Also, their needs are dismissed by employers or medical professionals that believe the harmful disability stereotypes I listed earlier.

It feels like a pretty massive lose-lose that we could remedy by continuing to normalize disability and by inviting more people into our spaces.

We need to keep reminding people that it’s OK to take up space as a disabled person — and most of the community will welcome you.

You’re worthy of participating and being in community with everyone else. You deserve to have your own experiences mirrored back at you so that you don’t feel as lonely or as tired. (This is coming from someone who held herself back from community for 17 years.)

I’m starting to dream up a new community space for disabled folks centred around disabled joy and I’d love to bring you along.

Let me know in the comments if you’re keen to learn more about it and I’ll add you to the email list where I’ll be sharing all the updates as I create it.