A woman in a wheelchair looks through a looking glass with a smiling disabled symbol on it

Finding Disabled Joy

Last updated: June 2022

So many of my friends who are disabled have spoken about the magic of being in a room full of people who are just like you.

Having SMA, and working in advocacy and lobbying, I thought I understood that feeling. I’ve been in so many rooms full of people with SMA, or even other neuromuscular conditions, that I thought I knew exactly what they meant.

Being with people just like you

The Harkin Summit, an international summit focused on disability employment and the advancement of disability rights, was hosted in Belfast this year. I was lucky enough to attend in my home city.

Here’s what I learned about attending.

I wasn’t really sure what to expect. I’ve never been to a multi-disability conference like this before, let alone an international one. But as the first morning came, and the people started arriving, it hit me.

Everyone was disabled, like me

I was in a room with several hundred disabled people and our allies. And it was absolute magic.

Over the course of the conference I was able to connect with people who I know have done amazing work and compare notes and approaches, talk about Changing Places, a list of accessible toilets, with anyone who would listen, and network with people I wouldn’t normally see.

And it was as magical as I could ever have dreamed.

SMA can be isolating

As someone with SMA I often do feel cut off or like I’m isolated in my journey. I think that’s part of the parcel of living with a rare disease generally.

But going to the Harkin Summit and living and breathing everything I do professionally, with so many others with similar goals and directions, was a refresher for me. I felt revitalised and fired up. And with the events of the past few years, I was ready for that.

If you find yourself feeling alone in the journey with SMA, here’s my advice.

Advice: find common ground with others

You are not alone. SMA comes with so many elements that cross over to other diagnoses and lived experiences. Whether it’s finding common ground in using a wheelchair, experiences in air travel or even in medical experiences like chest infections. It might not be exactly the same, but someone somewhere will know what you’re experiencing.

My day-to-day life was shook up for a day or two surrounded by incredible people, meeting my heroes like the activist Judy Heumann, who was a major force behind the Americans with Disabilities Act, and with so much disabled joy.

Sharing the joy

This summer I’m focused on finding the disabled joy. I’m going to be fearless in sharing that joy, and all of myself with the world.

We deserve to take up space in this world. Don’t be afraid to take it. If other people have an issue, it’s their issue. Not ours. Although the advocates can certainly help them fix it.

Be who you want to be. There’s a way around so many things that, these days, the sky is the limit. Dream big. Go for all the things you want to. Be a student body representative, learn to drive, figure out public transport or whatever it is you’re dreaming of.

Do it. You deserve it.

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