Your curiosity is not worth my trauma

“Your stall looks good, you make some beautiful stuff, so, you must have been in a pretty serious accident to turn out the way you are?” This was a new one. Usually they don’t speculate.

I hate that there’s a ‘usually’ for these horribly invasive questions. I hate that I internally rate them against each other. “Yeah, that was bad, but was it as bad as that time the guy cornered me at Centrelink and asked me about my chair with no preamble or small talk?”

I also hate that my fear of being approached with The Question is usually justified and realised. When I was preparing to go to the market, I told my partner that I was anxious – for many reasons, for the fact of the Unknown (being autistic and generally anxious, the Unknown is very scary), for the early morning start, for the experience of displaying my heart in the form of the things I lovingly create and hoping someone deems them worthy of purchase.

But I was also anxious of The Question, the one that often comes up in situations where I’m a sitting duck (frustratingly often, because sitting is my permanent state of being). “Why are you in the chair?”

Usually (ugh, I hate that), it comes under the guise of politeness or semi-self awareness. “I probably shouldn’t ask, but why are you in the chair?” If you knew you shouldn’t ask, why did you?

I used to just answer. I was so shocked by the presumption of The Question that I just blurted it out. Now, I’m not so shocked, and as a result, I’m not so forthcoming.

In this case, I said, “No, no accident. It was chronic illness. And anyway, I don’t want to talk about it. It’s not particularly nice. I would like to be recognised for what I do and what I make, just like everyone else with a stall that you’re speaking to today.”

When I know people have more time, I take them to school. I figure, if they expected me to tell them my story, then they should sit down and hear what I have to say. And I’ve developed a dependable routine that helps people realise exactly what it is they just asked me.

“Before I tell you,” I say, “I want you to think of someone you care deeply about. Then I want you to imagine them becoming wheelchair-reliant. Then I want you to imagine all the different ways that could happen. Now tell me the best one. The nicest one. The one that would be easiest to talk about with a stranger while you’re out and about, minding your business, running errands.”

They can’t.

And they start to realise what it is they asked me. This is not a fun little story that they can hear to satisfy their curiosity and then go about their day, and say to their friends, “oh, I met that lovely person in a wheelchair, interesting story”. This is a story that is inherently painful, a story of loss and grief. A story that has no way of being told without causing pain.

I also ask, “why did you ask me?” Usually it’s because they’re curious. “Do you approach everyone you’re curious about? If someone is morbidly obese, do you approach them and say, ‘why are you so fat? Is it genetics or do you just have no impulse control?’ If you see someone with a scarred face, do you approach them and say, ‘what happened to your face? Were you in a fire, or did someone attack you?’”

“And if you wouldn’t do it to them, why do you do it to me? Why is my medical history your business, but no-one else’s is? Because that’s what this is, you’re asking about my medical history, and I’d really like to know why you want to know, and why you think you can ask me.”

Sometimes I use a simpler approach. I say, “before I answer, how about you tell me one of the most traumatic things about you, and then I’ll tell you about my trauma.” They get uncomfortable, say they didn’t ask about my trauma, and then I ask if they can think of a way to get into a wheelchair that isn’t traumatic. Falling off a unicorn? Crashing into a pile of puppies?

I had an interesting conversation with my cousin recently. She has young children, and she said that when they ask her why someone is in a wheelchair, she tells them, “why don’t you just ask them?” From her perspective, she wanted to teach them that everyone has a story, and everyone is just another person.

But I asked her, “would you give the same instruction if someone was fat? Burned? Pregnant? A different colour? Would you encourage them to approach everyone and ask them why? Or just a person with disability?” And she really had to think about it. She knew her children might ask her why someone was different in other ways, but she probably wouldn’t encourage them to approach that person and ask.

She asked me what my approach would be. I agreed with her that everyone has their own story, but my belief is that it’s their own story, and we don’t need to teach children that everyone needs to share their story, or that children need to share theirs with others just because someone was curious. And to teach children that disabled people can be asked, and will share, because you’re curious, but other people don’t need to be asked, is an accidental othering.

We all have our own stories, and it’s important to remember that. But I don’t need to tell you mine, and I wouldn’t think of asking you yours. If you want to know mine, be my friend. Get to know me. And I can assure you, you’ll find more interesting things about me than just why I’m in a wheelchair, and that curiousity just won’t matter anymore.

If your curiosity is burning you up and you desperately want to know why I’m in a wheelchair, check out my YouTube channel, because I talk about it all on my own terms, when I’m ready to have those conversations. And you have to earn it by wading through videos of me talking about other interesting topics – a lot of hard work for you.

But if you approach me out of nowhere and ask me invasive medical questions, I will take you to school. You have been warned.

Bless.

Nell