Wednesday, March 23, 2016

Not Enough Room!

Image Description: A side image of a head with showing the brain which is full of thoughts like, 'I'm stuck' 'In the way' and 'back up slowly.'
Yesterday I wrote about trying to get into the clinic where I go to get my blood drawn. I described a needless barrier and how people watched while I tried to negotiate through that barrier. I also mentioned how the people in the waiting room and the people behind the reception desk did nothing other than watch as I struggled to get in. Some people, rightfully, commented that I should have, because the opportunity was ripe, spoken up and used my advocacy voice. They are completely right, I knew that from the moment I got in and settled that I could have done that differently and better.

I thought about it a bit and realized that the reason I didn't wasn't because I was intimidated by the fact that it was a clinic and that the power dynamics that come with being a 'patient' are always in play. It wasn't that. I ran back through the incident in my mind and then I realized that my mind was the problem.

I'm not sure that non-disabled people understand the complexities of moving about in a power wheelchair. We all make it look easy because it becomes simply second nature. But every moment that I'm out and driving I'm aware of my speed, the condition of the road or sidewalk, upcoming barriers, the flow of people around me and the need to be careful with my wheels and with the frame of the chair not to bump into or run over anyone. That's just normally. But when I get 'stuck' like I did in the clinic, because I moved in to make room for Joe to come in to help me, my mind is completely full of just moving the chair. I knew that if I did it wrong, I'd be jammed in and it would be really difficult to move.

Further, I felt the pressure of 'being in the way' which is something that is thrust upon disabled people all the time from a world where being 'inconvenienced' is cause for immediate upset and anger. The fellow behind me was clearly bothered by my movement and while that pissed me off, I couldn't process it. I just wanted to get my chair out of where it was and past the barrier and up to the reception desk. That's all I could do. I could do no more.

I don't like the fact that my voice was silenced because, in my mind there was no room for voice, there was no room to consider advocacy, there was room for nothing but the business of being disabled and needing to negotiate space. I don't like that those moments make me vulnerable because they make me silent. I know I need to learn how to always leave a tiny space in my mind for the voice that I need.

But it's going to take a lot of practice.

Shit, more growth necessary.


Glee said...

Yep yep and yep Dave :) Stella Young, our wonderful Stella said "You don't get Proud by being shit. You get Proud by practicing" :)

Jenni said...

Its always easy to figure out things you could have done better, when you have the time and don't have the stress hormones, audience etc.

I think its important to remember you did a good job here. You got yourself out of the scrape which was not of your making. You didn't shout at the rude people who watched you struggle or the huffing man who needlessly put you under pressure. You didn't transfer your disgruntlement at the position of the barrier onto the reception staff who looked at it every day and didn't think about how it might impact people who were different to them. You didn't have to get someone else to 'drive' for you, as many able-bodied people in cars do when parking in a tight spot.

You didn't do it perfectly. But I wouldn't learn nearly so much from a blog written by a perfect person!

Frank_V said...

Nothing irks me more than the words "You should have done x, y, z". Here's a broad hint to society, who callously throws these obstacles in the way of people with disabilities: Walk, or roll around, in our shoes for a while, before uttering "You should...."

Yes, perhaps, as people with disabilities, we should be our most vocal advocates. But consider this: This battle for disabled rights, for accessibility, for acceptance, for services, is a very long relay race we are running, for EVERYONE.

We advocates are not working only for ourselves, but also for the fugure of ABLE-BODIED people who are not yet aware of the day that they will become disabled, through age, accident, or disease.

We advocates get tired sometimes, 'tis true. When that happens, please PLEASE, able-bodied people, pick up the baton we are handing over to you, and help, instead of telling us "You should...."

Andrea Shettle, MSW said...

I think many of us forget that our human brains -- even the smartest, fastest brains -- are still finite. There are only so many things our brains can process at one time. Even if all those things, taken individually, are simple things, they can still add up to a lot if you have to process multiple things simultaneously. And if any of these things, for whatever reason, consume more brain processing power than usual, then something's gotta go. For you, that meant the processing power you needed to consider strategies for self advocacy.

An example I like to use for this is me and Spanish. Being fluent in English, I have no trouble with idiomatic expressions, metaphorical phrasing, sarcasm, etc. when written in English. Same if signed in ASL. But back when I was just starting to teach myself Spanish, for a while I couldn't understand anything in Spanish that wasn't meant to be read in a straightforward, literal fashion in neutral tone. Why? It certainly wasn't because I couldn't understand the concept of sarcasm or metaphorical language. Rather, it was because at that time, I was so new to re-learning Spanish that I had to basically look up the translation/meaning of every word I read. It took me about half an hour to work my way through a simple paragraph. It was a heck of a lot of work, and that meant a heck of a lot of my brain processing power was invested exclusively in just the very basic decoding process: this word = ?, this next word = ?, these words put together = ? (where ? = most literal possible interpretation). Trying to recognize when I should be reading something in a sarcastic tone or as a metaphor or an idiomatic expression all required brain processing power that I just didn't have. My problems with understanding figurative language in Spanish went away as soon as I had built up a basic vocabulary (and learned the more common idiomatic expressions).

But some things will always consume extra brain processing power. It sounds like driving a power chair (or driving a car) is among them, at least for people who don't learn these skills until adulthood or near adulthood. (I wonder if it's different for people who get their first power chair during early childhood?)

h smith said...

It probably isnt different for people who've had their first powerchair in childhood Andrea, because the problem isnt lack of driving skills its that powerchairs are designed very badly for the real world and are not easy to negotiate around obstacles,including bipeds with seemingly no spacial awareness,or in tight spaces. Even the smallest, lightest ones are huge, heavy and unwieldy and the space they take up and the way they move and dont move all make driving them around real world spaces tricky. As much as environments need to change to be accessible the powerchairs themselves could do with a big redesign overhaul.

Unknown said...

traffic jam in your brain, from the heavy barrier in the unexpected place where you were feeling somewhat 'less than', to start with. it's being human, and oh, how we hate to allow others to see us as vulnerable....when we know from our lives that others may ignore our needs (bad enough) or take advantage of our vulnerability to harm us in some way. The visible barrier creates a serious threat that able bodied folks literally do not see. Why the kindness of others seems so unavailable is a mystery beyond understanding. Thinking of you, Dave - and Joe. These events have a powerful impact on both of you, I imagine. Clairesmum

Alicia Butcher Ehrhardt said...

Sorry - didn't mean to be pushy!

My brain needs dialysis in the form of a completely horizontal no-input nap for 1/2 hour out of every three - I wouldn't even be able to make it to work most days.

One of the easiest ways to leave a bit of room is exactly what you did: think about it, so next time you are better prepared. This is called 'learning.'

Most adults don't bother - they're too busy with 'living.'

But being disabled is an almost continuous learning process in a world where we do not fit and aren't wanted, so we keep doing learning.

You're doing fine - we aren't in the high-pressure situation while we back seat drive.

Kelly said...

I have plenty of "missed opportunities" in which I could have advocated for myself but didn't, for whatever reason. One thing I trying to do is address things after the fact, if possible. For instance, maybe you could call or email or send a letter to the office manager at the clinic. Explain about the barrier and the way the staff watched and failed to offer any assistance. Maybe you can fix it before you have to go there again.

northlighthero said...

I always learn so much from what you write, regardless of topic.

Most of what I would have said has been said better by previous commenters - so I'll go off-topic to ask ...

Would you be willing to tell us about changing the Blog's title from "Rolling Around in My Head" to "A Battered Aspect"?