Monday, December 09, 2019

Speak For Yourself

On Sunday we decided that we needed to inject a tiny a bit of class and culture in a weekend Netflix 'Dynasty' haze. To meet that end we went to see Shakespeare's "A Winter's Tale" which was being broadcast live from England. It was playing in a movie theatre neat us, Shakespeare and popcorn! We arrived to find the disabled parking quite flooded from melting snow so we stopped at the ramp leading to the theatre and Joe got the wheelchair out and I got in. He turned to help me get through the doors when someone appeared saying, "I'll hold the door for you." Joe said, "No, we're good, we have this routine down. "It's okay, I don't mind." Joe again, "Please just let us do this on our own." No, I'm waiting for my brother in law who is in a wheelchair too."

And then she said it, "So I know what it's like."

I hear this freaking phrase far too often. People speaking of 'knowing' what disability is like because they, pick one:

1) had to use a wheelchair when they broke their leg.
2) had a relative of some sort who had a disability.
3) went to a training where they had to undergo a simulation of disability for 15/20/45/60 minutes.
4) once worked at a camp with disabled children.
5) presently work with adults with disabilities in some capacity.
6) saw this documentary or psa about disability, and oh how it made me cry
7) have a child with a disability - of any age.
8) once saw a person with a disability across the street.

This is theft.

This is silencing.

This is erasure.

I don't care if you worked with, lived with, parented a person with a disability you don't "know what its like." You know your experience, but that's YOURS not mine. A parent doesn't "know what it's like for their child;' a staff doesn't 'know what it's like for the person they serve; and using a wheelchair for a week or two doesn't give you the slightest clue as to "know what it's like."

Speak for yourself. Your experience is valid and valuable in the discussion of disability but your experience is just yours. Disabled people who live 24/7 with their disability are the only one's who "know what it's like." But even there. I know what it's like for me, I know what my disability means and doesn't mean. But I speak only for me and my experience. I do not speak for and cannot speak to the experience of someone who has a different disability and different life realities.


In any and all situations you need to 'speak for yourself.'

And, no one else.


Myrthe said...

This reminds me of a long-term substitute teacher I had last the year before last.
For context - we have four special eduaction divisions in my country. Vision, hearing, physical/intellectual, and behavioural/psychiatric.
I went from regular ed to behavioural special ed, and from thereon to a mixed program (class periods in normal ed, and a special ed homeroom. It was a really terrific program).

The substitute teacher had at one point in her career spent several years working in physical/intellectual special ed. She was bragging about her special ed expertise..
To a classroom that had only 9 people in it (the other half hadn't turned up).. four of which had been in special ed. (I don't think she knew that or even knew our school had that mixed program)
We didn't think her special ed experience made her special - after all, we knew special education was a lot more normal than she seemed to think.

That was the first thing.

The second thing was that when I turned up in a wheelchair one day (I don't remember if I broke my leg or busted my stump, but it came down to that I couldn't wear my prosthetic) and she stood next to my desk and put her hand on my shoulder. First, that wasn't alright because she didn't ask. And because it wasn't a brief pat, it was like she was leaning on me, so she absolutely had to ask. Second, because she had never touched me before and it felt infantalizing that the day she was touching me was the day I was using a wheelchair.
I asked her to stop.
She then asked whether she could pet my wheelchair.

I sent her a very stingy email later that day emphasizing the ridiculousness of her requests and she told me that she meant it very positively and that she knew how to interact with wheelchair users because of that several-years-in-special-ed.

Uh, no.
If people feel violated by the way you're interacting with them.. you're not interacting with them right.
It really is that easy.

ABEhrhardt said...

I hate to quash well-intentioned offers, but the people who make them need to learn to listen as much as those who are totally thoughtless, or maybe more - misinformation is sometimes even worse than total ignorance.

I am constantly having to tell well-meaning people not to yank a door I'm leaning on for support away from me!

Michael soucie said...

That was great Dave in all the times I've been with you I witnessed that all too many times, even a gesture or well meaning comment in the end should be kept to their self unless you actually ask for help then you are capable of doing what you're doing without them.

Andrea Shettle, MSW said...



She wanted to pet a wheelchair!?!! ... Does your wheelchair have fur or something to pet? Whut?

I'm amazed, it's pretty rare these days for me to hear of a completely new (to me) way for abled folks to do silly things, but here we are!

Unfortunately, stories of well-meaning people yanking away a door someone is leaning on for support is not such a new story, for me or anyone else listening to plenty of disabled folks I'm sure. But, that must be so aggravating, and I'm sorry you have to go through that so often!

Myrthe said...

Andrea - no, it was the push-handle, which is some kind of hard plastic. (My cushion cover is topped with velvet, though! Very soft. It's a pity there are pants between the cushion and my skin.) And (though she touched the push-handle before she asked) I'm not sure if she was just leaning on it and calling it petting as a joke, or if she was stroking it. (She was spiritual of the 'ask the dating persons in the classroom about their zodiac signs to check their compatibility' so it wouldn't surprise me if it was the latter.)