I’m really tired of being disabled and I don’t wanna do it no more, mkay?
Oh yeah, that’s not a thing. I guess I’ll just take a deep breath, use my words, and say, “WTF is the matter with you people without disabilities?” No, seriously, are you all right? Is there anyone I can call?
I’m not really in my Happy Celtic Princess Place today. I just came back for a walk in carwash-like rain, trying to fit in a blood test at the local clinic before I go for my heart monitor later on. The accessibility button didn’t work and exactly nobody helped me. I managed to recruit someone on the way out, though, but he was coming in anyway. Then I went to Starbucks and had a feeling their button still wasn’t working. Another dude was going in and I shouted to him to hold the door and he totally ignored me. I walked in after trying to push the door with one hand and my walker with the other. I immediately said to a barista, “When the button doesn’t work, it’s really hard for people like me.” And she said they were trying to get it fixed. (Yeah, pull the other one.) But at least she saw me on the way out and helped me without asking. So, she gets a free cookie, I suppose.
“Not about us, without us.”
Fellow SpAN contributor and magical spoonie elf Derek Newman-Stille introduced me to this phrase: Not about us, without us. I really love it. I speaks directly into the disaster I experienced this past weekend at a writers conference. I wrote about it yesterday in my author blog called Um, peeps without disabilities, we need to talk. The essence of the incident was that I was on a panel about creating disabled characters in spec fic, and only as we all started speaking did I realise I was the only disabled person on the panel. Not one person prepared me for that and I had to keep my dignity and sense of humour and do my best to give the attending audience the information they wanted. The dynamic of the whole thing seemed to shift so that all the attention turned to me, as people started realising I was the only own-voices author there. Someone even gestured to me every time they referred to people with disabilities in a sentence. I had a visceral response and my mind and body heard, “Like you, Cait. Like you,” every time that hand-gesture happened.
I think I had help from heaven above in order to get through that panel. Fellow SpAN contributor and my bff Talia Johnson was there, and she was getting livid and protective on my behalf. When it was over and the room cleared, I said to Talia, “I fucking need to talk to you!” And we went to a far-away place at the college and I vented while trying to manage my blood sugar. Then we found our friend and SpAN contributor Caro Fréchette and the concern in Caro’s expression just made me start to cry.
So, like, I grew up in a tough working-class Irish ‘hood in Verdun, Quebec. And you non-disabled people made me cry by making me feel marginalised in what should have been my safe space.
Let me make a few things clear:
- Deferring to the token disabled person is not empowering.
- Not warning someone that they are the only representation of own-voices is beyond inexcusable.
- Warning someone at least gives the person with the disability the chance to say whether or not the panel should still go on or be cancelled.
- Consider putting readers as well as authors on a panel. Readers buy the books and they know how they want to be portrayed. (Thanks, Caro, for that reminder.)
- Even if you have done research for your character and have had your content vetted by sensibility readers, you are not own-voices, and should not be the majority of the panelists. I appreciate the inclusion of characters with disabilities, but you need to be invited by us to our table. You are not experts in what it’s like to be us.
- Be humble enough to know you need sensitivity training. Ask us! We’d love to help plan your panel. We can talk about the diversity of invisible and visible disabilities and how that representation would make the panel rock!
Fellowship of the Spoons
The only good thing that came out of this is that several of my spoonie friends have offered me support and encouragement through this ordeal. And a few others and I will work toward ensuring this doesn’t happen again. Hopefully people without disabilities will listen to us and set policies with us about safe spaces and representation. And this should not only be for spoonies, but for any marginalised or own-voices group.
I have disabilities of the brain and of the body. My Irish is in the soul. My soul is not disabled. Therefore my Irish is not disabled. Don’t think you can talk over me on this one. It will not go well. I will not be silent about this. If you’ve ever met me, you’d plainly see that silence is not my forte.
In the meantime, if you do not have a disability, remember that you don’t know what it’s like to be in my space. It’s not your space. You can see it from the outside, but you’ll never know what it feels like. Acknowledge that, and we’ll get along.