Monday, September 16, 2013

The Missing E of Disability

Being on Facebook now, oh how I had resisted, I find myself much more informed and aware of what's going on in the world of disability than I was before. As most of the people who have 'friended' me know me because of my work and writing, most of them are connected in some way to the disability community. By browsing through the various posts I become aware of news and information that, previously, never would have made its way into my consciousness.

I am also exposed to all sorts of short, mostly inspirational, films or commercials or clips, about disability. Yesterday, after we had our batch of Banana Bread (made with 7 year old Cuban Rum) in the oven and before we began to make a monster stew, I spent time watching three or four videos in a row. Some were better than others but I did notice something - they all showed, in one way or another, an adaption that had been made, or devised, which made living easier for the disabled person at the heart of the video. To the narrator these little adaptions were astonishing in their cleverness. (I should clarify, that each was clever.) But what has never been properly presented is that 'inventiveness' is at the heart of living with a disability.

Everyone I know with a disability, no matter what the disability is, spends much of their time figuring out how something will get done. It seems like a life-long process. Conquer one thing, and another comes along. I have written before about how my apartment is full of adaptations, many very clever, that make it possible for me to do what I need to do. Adaptation simply is part of disability culture, the disability experience.

I have always believed that those, 'ride around in a chair for an hour to experience how hard it is to be a disabled person' kind of exercises are both patronising and counter-productive. You cannot take a 'tourist' approach to difference. I believe asking someone to write a paragraph without using the letter 'e' is a much better exercise. I know I've written about this before, but I want to revisit this. The whole time the pen is in hand the mind is thinking and evaluating, options - that's life with a disability.

Try it now. Translate this sentence into one that doesn't use the letter 'e':

My home is my castle where I eat and sleep.

It can be done, it takes a little time, it takes evaluating options. When its done, it will probably be different from other adaptions - but that's the way it goes with adaptations.

I'd love it if people started to understand from these clips that while someone's disability is unique, the fact that they live with clever adaptations is not. It just is. I bet every single person with a disability can ream off ways that they approach living with a disability, the adaptations they make. It's part of our experience, it's part of our, dare I say it, culture.

I saw a clip yesterday where a fellow without arms had come up with an adaption which allowed him to eat without assistance. It was cool, it met his needs exactly. It was clever, like all adaptations are.

We are the community of people with disabilities we adapt and we go on.

That's who we are.

That's what we do.

It doesn't make us 'special' as individual, it makes us interesting as a community.

Anyways, how you doing at your sentence without the 'e'? Post it in the comments and tell me if you found it a bit of a mental work out.



Anonymous said...

I luv this! ;)

Sarah said...

My spot is my domain in which I find food and naps. A definite mental workout!

Dave Hingsburger said...

Sarah, well done! And completely different from mine. I wanted to wait until someone else took on the challenge ... here's how I rewrote that sentence:

My crash pad is my lair in which I can chow down on food or curl up and nap

Celine said...

Ma maison - my spot for tasty snacks and looonnnng naps.

Liz said...

Yours are all snappier than mine:

"My habitation is my mansion in which I sup and nod"

Belly (Liz McLennan) said...

My digs: a cozy location for supping and catching forty winks.

Does it still count if I changed noun and verb tenses?

If not, I submit: My digs: a cozy location in which I sup and catch forty winks.

What a brain-teaser! Do you have any more?

Anonymous said...

My family building is my stronghold in which I munch and nap.

Wow . . . loses something in this type of translation . . . kind of like some "adaptations," eh?

Deb said...

I'm not even trying the brain teaser, I just want to know where you get fresh monster for your stews? I haven't been able to find monster in the local supermarket. Do you get yours at a specialty deli? ;)

Colleen said...

Hi Dave:

This is a very interesting approach. You have to be a good problem solver and adaptable.

I was kind of distracted by the banana bread with rum in it. My banana bread recipe isn't nearly that interesting. Are you sharing?


Louna said...

In my rooms I find all my luxury; I nourish my body and shut down at night.

I certainly did not reach the elegance of some other adaptations, but English is not my first language. I believe I once heard a French author wrote a book without e's, and this letter is at least as common in French as it is in English, if not more.

As for the exercise, it felt more like a game, a brain teaser... Then again, I already live with a disability.

Carolyn said...

My mansion is my manor a location at which I fortify and nap.

Anonymous said...

Heres a fab recipe for banana bread
This is a fab way to cook a banana loaf

Dave Hingsburger said...

I love the examples but what I was wondering about was how closely this excercise mirrors the experience of living with a disability. If we can't do it the 'normal' way we have to figure another way of doing it. Disability, and adapting to it, is as much a mental exercise as a physical exercise.

Anonymous said...

My crib is good to munch on snacks and for napping!

Kristine said...

I inhabit a royal spot with food and nocturnal trips to my subconscious world.

I've done basically this same exercise in teacher trainings, to help us understand what school is like for kids with learning disabilities. We were asked to write a paragraph about our summer vacation without the letter E. While we were trying to write, the "teacher" kept shouting out directions to remember a good topic sentence, and strong supporting details, and reminding us how much time we had left... It didn't take long at all for everyone to just want to give up. I hadn't thought about it at the time as an analogy for physical disability, but I think it's a good one! Life often feels like a crazy series of adaptations, that become almost natural after you've already figured them out, but they took some brain twisting in the first place, and it's CONSTANT. Nearly every moment involves some sort of adaptation, or just a worry or thought process, that other people wouldn't think about. Seems like a fun puzzle for a few minutes, but quickly becomes so fatiguing....

Rod E. Ruff said...

A banana and a cup of rum can go a long ways prior to blog writing. ;)

Princeton Posse said...

Today's tour of schools for adaptation starts now.

Ettina said...

My building is my fort, in which I fill my stomach and go unconscious.