I can’t get into that store/library/bathroom. Again.

Written one year ago today for Disability Pride Month

We are more disabled by the society that we live in then by all bodies in our diagnoses.

⁣When I first heard those words by Stella Young in her revolutionary TED Talk (transcript available at link), it changed my life. I grew up with and in the medical model of disability, the one that views illness and disability as wrong, something to be fixed and if it can’t be fixed, a failure to be hidden. It's the origin of much of the stigma and the foundation for a society that sees health as the norm (rather than the privilege it is) and accessibility as a nice thing to have, rather than a right.⁣

Switching my thinking to the social definition of disability changed everything and it might do the same for you. When you see disability as a result of the barriers in your environment, rather than an isolated personal issue, it blows up your worldview. And it shifts the responsibility for inclusion in a way that could truly change our culture. Instead of the disabled person being in charge for creating the accessibility and change they need every single day (trust me, it’s exhausting), placing that responsibility where it belongs — those in charge of the environment — is likely to create more access, and at a faster speed, as well.

I believe in being part of the solution, contributing my lived experience and professional expertise to ensure that any changes made will actually work for the disabled community. But understanding that I am not responsible for the entirety of the solution was, quite frankly, an incredible relief.⁣

Your disability is defined by an inaccessible society. What could you do if your community was accessible?⁣

Added: my countdown to my power wheelchair is about 40 days or so. I will get measured any day now. It will greatly aid my accessibility. But not completely. I am going to maximize for a lightweight and small profile chair, but it might be too bulky for some doors (I fear; might be an unnecessary fear), some store aisles, and some tastes. In my current chair, I had an ugly run-in with a fellow Starbucks customer, and there was plenty of room. We both approached the napkin/sugar station at the same time, and he barked at me, “Damn! You don’t expect to get run over getting coffee!” I wasn’t anywhere near him; I had stopped to let him go first. I am actually overly careful when I am in my chair or using a store scooter. I was aghast, and as I do, I froze. So he “kindly” repeated himself more loudly, and leaned in, as if I were also deaf as well as using an assistive device.

All kudos to Starbucks. They told me if I or they ever see him again, they will inform him he is banned from that particular store for harassment. He didn’t realize that store has a strict accessible to all policy, but also that I write there often; they know me like Norm at Cheers.

But I worry. Am I going to gently zoom around a corner at a bookstore and meet someone else who thinks my assistive machinery shouldn’t be there? It’s scary.

Also: it is okay to allow your children to ask me questions. They are going to want to know why that lady is sitting down, or want to say that my bright indigo push covers are pretty, or blatantly ask me what happened or if I like my chair. This is so much preferred to staring and whispering! If they can talk to me, and see that there is nothing frightening about what is going on with me, they are more at ease around the disabled, and they have learned compassion, and a valuable lesson about how to gently and politely interact with strangers. It is also okay for you to do it. Tell me you like my chair. Ask me if I need assistance. The days of discretely looking away and “not noticing” the disabled are long gone. I’m just a person sitting down, that’s all. Far less disruptive than my fainting and dislocating something, or having a cardiac event in public, and hey, I get to choose my own seat. Trust me, I am moved and humbled every time someone holds a manual door for me. (All doors should be accessible; push bar or especially pull doors can be incredibly daunting from the seated position.) One word of etiquette: just ask before pushing my chair. When I am in it, it’s like a part of my body. If you wouldn’t touch my back to escort me, don’t. Same goes for when I am not in it: if you wouldn’t be comfortable moving my car without asking, don’t. It’s a very personal thing.

[Accessibility description: a photo of oxidized bars on the banister by concrete stairs. Text: “my disability exists not because I use a wheelchair, but because the broader environment isn’t accessible.” – Stella Young.]