How do we build community with disabled people?

Today, I want to talk about community. And while that usually means focusing on the disability community, what I actually want to address in this newsletter is how community leaders can better build community with disabled people.

Let me start with a story. 

For those of you that don't know, I'm part of a choir community called Chorus Studio. Chorus Studio is literally one of my favourite places in the city, and I love that I get to go there every week and engage with so many wonderful people. 

A couple of months ago, the studio director, Rebecca, reached out to me because she was looking into planning a retreat-style event as a new offering for the studio. She shared some of the details of what she was planning and wanted to know whether I felt like I would be able and comfortable to participate in an event like that one. 

If I'm honest, it took me a while to answer that email. It wasn't until Rebecca followed up that I felt like I could, really. But I took a deep breath and responded as honestly as I could, sharing what I thought the barriers to me participating fully would be and answering any other questions she had. 

When I got Rebecca's response and read through it, I felt myself exhale and relax my body. I had been holding a lot of tension because I expected that my answers would be burdensome and throw off the planning for this event. 

Instead, the email I got showed me that not only were Rebecca and her team open to hearing me, they took everything I said as valid. They believed me and understood me. And Rebecca even thanked me for sharing as candidly as I did, because ultimately, it showed trust. 

My response to the response was filled with emotion. Because it was a very emotional thing! 

“Thank you for making it so easy and worthwhile to be open and transparent about it all. Not going with the flow or just saying yes to things out of fear of missing out is still new and vulnerable to me — and I so appreciate having you and the community as a place where I can practice that and feel safe in doing so. (I can feel my brain rewiring itself right now and it’s a very emotional thing.) I have a lot of gratitude to sit with.”

It's an exchange that will sit with me forever. And it has been instrumental in changing how I feel about speaking about my needs and sharing my experiences.

So, why did I hesitate in answering that email, when I already had such a good sense of the type of person Rebecca is and the intentionality behind everything she and her team does at the studio? 

The answer is rooted in past experiences. I have very rarely been part of a community (whether that's a workplace or some other group) where people have taken my needs into consideration when planning events or outings. And usually, when I am given space to say something, it's either too late, or it feels really cumbersome and uncomfortable for me to say something. 

What was so different about this experience, was that I was given space to raise concerns before anything was planned. And my opinions and lived experiences mattered as part of the planning process. 

This is what building community with disabled people looks like. Thinking about their needs as you know them, but also taking a humble and open approach and asking for input because you know you don't know everything.

Rebecca and I had a chat about this exchange a little while later, and she said something that stuck with me. She said that while she really appreciated how beautiful our exchange was, she was saddened by the fact that it was such a rare occurrence. How could it be that in the 18 years or so of me being disabled I've only ever experienced the space to be transparent without fear just a handful of times? 

That, friends, is the unfortunate reality of systemic ableism. It's everywhere, regardless of how well intentioned people may think they are. Being inclusive takes more work and effort, yes, but it's so, so worth it.

Thanks for reading!