Weird around Wheelchairs; Thoughts on Disability Etiquette

“What size is she?”

Early in our relationship, The Boy and I had wandered into a store. I’d expressed an interest in some T-shirts that were on sale and as a sales clerk expressed an interest in helping me, she asked The Boy the above question. She did not ask me. She asked the person standing next to me.

People get weird around wheelchairs. I have a theory that it originates in childhood admonitions to not stare at those who are different. However, since parents forget to accompany this excellent piece of advice with an alternative lesson on how to actually interact with those who are different, many people are at a complete loss for what to do. For some, it translates into avoidance. Not staring becomes not looking at. This was confirmed to me by my friend Ken who, as a teenager, borrowed a wheelchair in a mall to “see what it was like.” He told me that people don’t have eye contact with wheelchair users. Before that conversation, I had no idea that eye contact among strangers was normal! I thought nobody looked at each other. Then I realized that people don’t look at me.

For some, the avoidance become so strong that they will twist themselves into a pretzel to avoid interacting with me. I can’t tell you how often sales clerks have directed their assistance to the person with whom I was shopping or how many times I’ve heard a waiter ask my mother or sister “what would she like?”

Then there are people who don’t avoid, but still seem to assume that I’m not quite a real person. This usually translates into a belief that since I, as a seated person, is the height of a child, I should be spoken to like one might a child. Often accompanied with a bent over position, hands placed on knees. I’m surprised they don’t offer me a cookie while they’re at it.

A few weeks ago, I popped out to get catfood. The clerk in the pet store spent the entire visit talking to me as if I were three years old, her sentences rife with Okays, drawn out and rising at the end as Okaaay?, just the way many people speak to toddlers. “I’ll just get that for you, okaaay?” and “insert your debit card when it tells you to, okaaay?” and “I’ll go first and open the door, okaaay?”

I left at high speed to avoid smacking her.

My wheelchair may mean that my head is the same height as that of a child, but in actuality, I’m an adult with a brain. Well, not every day – living with RA, chronic pain and fibromyalgia occasionally means my mind vacates the premises, but most of the time, I can at least fake being a responsible adult. The above-mentioned purchase of cat food would seem to support this claim, wouldn’t you think?

Erasing this ridiculousness from our world requires a two-pronged approach. First, giving people the tools to break down their pre-conditioned discomfort without blame. If you were never taught to eat with a knife and fork, I can’t blame you for not having table manners. The same goes for disability etiquette. If you were taught not to stare, but never what to do instead, is not your fault that you’re acting like an idiot.

Oops. Was that out loud?

Easter Seals has published an excellent guide to disability etiquette that covers a variety of situations and disabilities. It tells you how to best to speak to someone who is hearing or vision impaired, how to avoid getting a stiff neck – and giving it — when speaking to someone in a wheelchair, how to offer help and how to show respect. It should be mandatory reading for pretty much everyone. Even if you are comfortable around people with disabilities, I’d bet you’ll learn something.

Secondly, having conversations with parents about what to teach their children will deal with the next generation and how it includes people with disabilities. Kids are wonderful. They’ll come up to you and ask why you use a wheelchair and after you answer, that’s it. You can then move on to talk about balloons, Pokemon and unicorns. To them, the wheelchair is either a nonissue or a tool for fun – you can ride on the back! (Also applicable for those who are child-like – hi, Ken!)

It’s the parents who are the problem. Many times, I’ve had the beginnings of a good conversation with a child, only to be interrupted by a parent apologizing profusely while they pull the child away, in one fell swoop teaching their offspring that disability should be avoided. Instead, hover in the background to check that the person with a disability is comfortable answering questions and otherwise don’t interfere. If your child has questions afterwards, teach them what to do instead of what not to do.

As for me, I’ll continue trying to gently educate people who approach their interactions with me awkwardly. If they’re trying, I’ll try, too. You create more change with kindness than when you bite their head off.

That said, The Boy and I have agreed that the next time we’re in a store and the sales clerk asks him what size I am, he will blithely reply “I don’t know. I just take her clothes off.”

Of course, that’ll freak them out about disability and sexuality, but that’s a post for another day.

This post also appears on CreakyJoints.


Anonymous said…
Good morning, Lene. I was just catching up on your recent posts and wanted to say hello and how much I enjoy them. I especially enjoyed the last post and pictures of flowers. Here in Dallas we haven't been as hard hit as other places, but its been an interesting winter nonetheless. Thanks again for such thoughtful, enjoyable posts.
AlisonH said…
I guffawed so thoroughly that I had to read the beginning and end to my hubby to explain--priceless!

And yes, absolutely, on all points. Me, I'd have been looking that sales clerk dead in the eye with just enough of a smile to be friendly but firm and going, You have GOT to be kidding me.
Anonymous said…
Starting when my daughter was around 7, I'javascript:void(0)d give a store clerk a check and they would give HER the change and receipt, even though I was closer. Arthritis isn't catching, you know.
When I took her to Children's Hospital for some tests and the nurse told her "Ask your mom" as if I needed a translator or something. Hey, I'm right here!
And people who grab their children and YANK them away, even though they weren't in my way. I promise, I'm not going to run your kids down.
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Anonymous said…
Thanks for writing frankly about this topic. Sometimes it's so hard to be empathetic about those who are "different" and we have to learn to put ourselves in their shoes (or wheelchairs). We have a special education professor who has her students put on blindfolds and try to navigate around the building (with help) so they can begin to understand what it's like to live with a disability. Not the same as living with a real disability but at least it builds some understanding. When I was at the American College of Rheumatology conference last October, I visited the booth on a pharma company and was reading some literature on the RA drug I'm taking. A sales rep approached me probably thinking I was a doctor. I told her that I was a RA patient who was taking her company's drug. She took a step back, like I was contagious, and said "I'm sorry and hope that you get better." It's hard to understand without lived experience. I love the fact that you don't hold back and speak boldly about these issues. Andrew
Jods said…
Funniest but not -funny- at- the -the -same -time, thing I've read in ages Lene. I my job includes caring for and hanging out with some fun loving young men (under 19)who need electric wheelchairs and full assistance for everything. We go out sometimes to the movies/footy etc and I see what you are describing. It's widespread and pretty upsetting. Keep being you Lene. Shock as many people as you can I reckon! Or just run them down. 😊😊