April 6th 2019 (Twitter Thread on Disability and Consent)

CW: Disability, Consent, Ableism, PTSD

A thread I read yesterday got me to thinking about my interactions with people in the outside world – especially on the bad days.

Specifically, to the different ways people respond to various mobility aids and my particular flavour of broken.

Forearms crutches leaning against a walker, two single handed canes in between that and a wheelchair.

See, there are good reactions and bad ones, and if you haven’t stopped to think about the person you are interacting with as a PERSON rather than as a disability, you might do something you think is good and…

Years back, Mister Tea and I had gone to the grocery store.  It was a wheelchair day.  And it was a day when I was struggling a bit with the wheelchair.  This was before I had one that was properly sized for me, and it was a ponderous creaky wobbly old hospital issue chair.

Terrible to use, frankly, but I still loved it, because it gave me the capacity to move when my legs refused to work.

This particular day my shoulders were subluxing and resettling on almost every wheel spin, so my path to the front of the grocery store may have been painful to see.  It was slow.  I probably looked like it hurt.

I’m good at hiding it, but let’s face it, no matter how much practice you have, sometimes pain leaks.

I go into this depth of description to explain why I understand what was done.  It was the wrong thing to do, but I do understand why it was done.

I’d just gotten to the ramp up to the door, and suddenly I’m moving.  Someone has grabbed the handles on my chair and is pushing it.  I can’t see them.  All I know is that someone has grabbed my chair and it HAS to be a stranger, because Mister Tea understands my stubbornness.  He never just decides for me where I’m going, what I’m doing…

I have PTSD.  I don’t like being touched.  I’ve gotten better about it over the years and can handle and appreciate hugs from friends.  But I still can’t handle it from strangers.

Greyscale image of a clouded sky, presaging a storm  Text over it says "Trust no One.  This is what PTSD tells us.  PTSD lies, not everyone wants to hurt us."
I look forward to the day I need this reminder less frequently.

It was a short distance.  My momentary kidnapper (And yes, I am using that word) got me up the ramp, deposited me like a delivery for sale, and walked off.

No interaction.  There’s a part of me that figures that human may have been grumpy that I didn’t say thank you.  Because he’d helped me, right?

Wrong.  What he’d done was take away my personhood.  What he’d done was make it so that I spent the time until Mister Tea got to me shaking.  Trying to shove the panic laced with humiliation back into one of the boxes in my head.  Dancing on the bleeding edge of a panic attack because I’d been made to face just how vulnerable I was that day.  And I had been touched without my consent.

Let me say that again, just to make sure it sinks in.

I had been touched without my consent.

“But, it’s just your chair!” you might say.

There’s nothing JUST about my chair.  When I am using my wheelchair, it is an extension of my body.  It IS my legs.  And you wouldn’t just go grabbing someone who was having an extended coughing fit and slinging them over your shoulder to get them into a building, would you?

Now yes, I’d been struggling.

If he’d asked before grabbing me…  to be honest, I would have said no.  I do have a streak of stubborn that can be impressive.

But if he’d asked, he would have put the decision in my court.  I could have chosen whether or not I wanted the assistance.  And that’s the step a lot of people skip.

It’s as if once we have assistance devices, there’s a blurring of the concept of having any rights of our own.

That probably-thought-he-was-being-a-wonderful-human-being is the primary reason that unless we know for certain that I will actually NEED help with the chair, we don’t put the handles on my current one.

To keep random humans from deciding their desire to help trumps my right to choose.

There are a lot of other incidents – some on my own, some with Mister Tea – and I could probably spin this thread out with bad examples and ranting until the tweets were in the hundreds.

Instead, I will pull one of the rarer positive ones.  One where a group of people were more aware.

Mister Tea and I had gone to see a movie.

I was using my forearm canes.  I probably should have been in my chair, but the day was borderline, and I do have the aforementioned stubborn streak.

When the movie was over, we’d both headed to bathrooms.

Where I made a mistake.

I have a thing about the accessible stalls.  I like leaving them for people with wheelchairs or service dogs or…  you know, people who need them.

I figured that I was on sticks that day, rather than wheels, so I didn’t need it.

My error caused one of the most complicated toilet experiences I’ve ever had, and also ended with one of my cane-tips getting wet.

I dried it off as best I could, but the paper towels by movie theatre sinks are terrible for absorbency, and headed back out to find Mister Tea.

I was doing fine …  until I wasn’t.

Image of a red 20 sided die, with white numbering.  It has landed on a 1.
Chronic Illness makes these more common.

Moved a bit too energetically, because one leg had mostly shut off, and you’d be surprised how much effort it takes to move that kind of dead weight.  Having a bit of speed and momentum behind it helps.

And the wet cane tip slipped out from under me.  I went down.  Hard.  The sound my knee made when it hit the ground was definitely more than just the bone vibration carrying through my body.  Other people heard that.

And I have EDS.  So, while I mitigated the fall a little because my joints can do more than they should – it made my positioning a bit comical.  If it hadn’t hurt so much, I probably would have been laughing because I knew how weird it must look.

And if I didn’t laugh at my body’s ridiculousness from time to time I’d probably go mad.

I could hear people around me, some were talking to Mister Tea, some to each other, but there was one chap who’d been the closest when I fell.

From the way his shadow was shaped (I hadn’t actually looked up yet, was still sorting out the aftermath of the fall and trying to school my features into something other than “That REALLY hurt”) I could tell he had started to move to catch me or help me up.

And then stopped.

Which made my day.  It was an enjoyable movie.  But it was this interaction that made my day.

Then he ASKED me if I needed help.

Which is so rare it almost made me cry.

I thanked him for the offer, said “No, I just need a few minutes to sort things out.”

And that was that.  There were still concerned humans, including that one, sort of semi-circled around me, but no one had automatically moved in.  No one had grabbed my shoulders to lift me up (which has happened) – they just wanted to be sure that if I did need help, or if a call needed to be made, or… the option was there.

I managed to lever myself back up, as three out of four limbs were still mostly functional, and Mister Tea and I left the theatre.

So, I guess the point of this thread is – please remember that just because someone is disabled, it doesn’t mean they need your help.  Or, more importantly, they would probably appreciate the option to CHOOSE whether or not to have help.

There’s been a lot of discussion regarding consent recently.  And I approve of the dialogue.  I just hope that it comes to a point where it covers consent for all people under all circumstances.

So that maybe I won’t have to worry about having that kind of panic attack at the grocery store ever again.

On the right side of the image, a shoulders down shot of a human in a wheelchair.  (Wearing boots, denim and a black jacket.)  Left side of the image has the text:  Easy rule for touching a person using mobility devices:  ASK FIRST! (The mobility devices count as part of the person.)
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