Thursday, January 31, 2013
"You look adorable" said my dear colleague Joanna as I headed to the door.
"I don't feel adorable," I said.
I had one arm in my bright pink and blue striped coat and my head in its tassled hood so that my other arm, in a cast, could jut out in a sling.
Last Saturday I broke the long bone in my arm when I slipped on ice. We live on one of the steepest streets in Toronto. I heard the crack and felt an odd bulging sensation around my wrist. I got out my phone but realized that I couldn't move my right hand to use the alt key. I waited on the cold ice, thinking someone might appear. But they didn't, so I gingerly walked up the 29 steps to our house, holding my right hand in my left.
"I fell and broke my wrist."
It was 6 o'clock and for the first time we'd purchased movie tickets for a show that night at 7.
"Maybe you just pulled something out of place. Let's take a look."
"I can't take my mitt off,' I said, staring at the blood red Olympic mitts I'd borrowed from one of my daughters.
"It hurts too much."
I'm a speed typist but today I was trying to type and format using my left hand. It was painstaking work and I was trying to submit an abstract for a conference on a deadline. The hours ticked on as the most basic tasks -- like highlighting, copying and pasting, even changing a font -- proved too much.
When I began getting security messages from a firewall that prevented me from moving within blogger, I was almost brought to tears by this request from our IT help desk. "Press control, alt, delete."
"I've only got one hand," I squawked as I laid the phone down and did a one-handed finger version of the game Twister.
The family was not used to the new me. "If you're waiting for me, it's because I can't tie my shoelaces."
When my Occupational Health and Safety coworker came by to get a serial number on my adapted mouse he was amused to see the penmanship of my non-dominant hand.
"I was going to e-mail it to you," I said, "but I was having trouble typing."
I dictated the numbers from my chicken scrawl but I noticed that he turned over the mouse to eyeball it himself.
Later in the afternoon, as my pain meds were wearing off, I was setting up our next BLOOM speaker night on Facebook.
Rich Donovan, a former New York Stock Exchange trader who now advises businesses on how to engage the disability market, asked about my arm. Rich has cerebral palsy and attended our school back in the day.
"It makes me think of kids with multiple disability and at what point they just give up," I wrote. Below is the conversation and I'm not fixing my typos (I did delete our scheduling remarks).
and they give up because few expect anything from them
im not sure i agree although expectations are a problem - if u cant find a reliable way for a child to communicate thats a massive demotivator -- i dont think there are any easy answers --
the first root in solving a complex problem lies in the set of possible answers...that set is too narrow today for PwD
you mean no easy answers is too narrow a set? i guess i still havent cracked the code and my son is about to turn 19 and it isnt from lack of effort -
no, i think society has to catch up to you...
of couse it took about 18 yrs for me to come to the realization that i dont control the outcome for my son and all the platitudes i was raised on about anything is possible if you try hard enough were garbage -- perhaps they should use that one on mortality
society still feels that the best solution is to take away all risk...that does nobody any good...once all options are on the table, it is a matter of finding the correct path for 97% of PwD
i wonder whether my son falls in the 3 per cent or the 97
i bet 95% of parents ask that...
i dont think so -- not at this stage -- most parents with teenagers know -- sure, everyone asks when they're babies
as a parent myself, one only wants what's best for the kid...
the question is always defining 'best'.
i agree -- parents can get very confused with what makes them happy vs what makes the kid happy -- just because an experience is different doesnt make it less
ON THE NOSE!
but thats also how the rest of the world works and judges people -- and tells them theyre worth something or not
most folks would be miserable being me...action is what counts, perception is for screenwriters.
what if someone doesnt have the ability to act in order to overcome?
and i detest the word overcome
ok, i hope you are sitting down.
how is that unique to disability?
One could say that comparing a ballerina to a cabbie...
because when u r born with regular or above average abilities you are "gifted" -- life truly is a breeze -- you learn everything through osmosis
i grew up with the idea that intelligence was earned -- now i know that's wrong -- it was just a gift that could be used
i made choices that led me here
luck is earned, you still need to choose a path
but you had the natural intelligence + smart choices ++ ability to express who u are
i had a friend when i was a kid...
im sure you did make choices that made a difference -- but we also have to work with what wwe're given
XXX was/is non-verbal w/ 'severe' cp...
but he understood everything
but what if he didnt understand everything and never found a reliable way of communication
if society was results based, not process based, he would be in a different spot.
again...how is that specific to pwd?
are u saying society is results based but shouldn't be?
no, i'm saying it is process based, and should be results based.
it seems pretty results based to me
in that we need not care how one gets there, just get there
i think that is true for a lot of physical only disabilities whre you can find workarounds
my point is, potential needs to be unrelated to disability...whether one's potential is high or low, true inclusion allows for both
sometimes rehab isnt rehab and technology hasnt progressed to the point its easy for some people to use
we'll get there...when someone paints the right picture
today, the picturee is still spelled CURE
okay im interested in yur point -- but lets say that instead of being able to maximize your intelligence you have to become an olympic gymnast w your disability? how is that an eben playing field
i agree -- cure is about as crazy as saying we're immortal
never will be...by definition
i'm not trying to even the field...i'm trying to tilt it in our favor
but that's where i think you need a different way of assessing value
'we' have been playing by 'their' rules...i have a better game and 1.1 billion people behind me
oooo...i like that one
my son will never graduate high scgool but has taught me more about whats impt in life -- but who wants to listen? we dont even have the words to describe this kind of human value
im writing about a children's rehab model where normal is the benchmark and theyre not even measruring some of the most important things -- they have no way of detecting or seeing them
sure we do...you know the value in your son, the rest of the world just needs to understand something they are not exposed to
i think there has to be a willingness and i dont see it - i see people trapped in and actibg on stereotypes they dont even know they have and would never admit
i wish change happened faster
I signed off knowing I still had to produce this abstract and now I was a wreck (in more ways than one).
An hour later there was a knock at the door. It was my good friend Crystal, a former Holland Bloorview client who sits on a number of committees and has brilliant ideas, some of which she's shared in BLOOM.
She was surprised to see me in my current predicament. "I guess this gives you a sense of some of what this is like" she said gesturing to the hospital halls around us.
I nodded my head, wondering how Crystal, my son and other children had ever survived their multiple surgeries and set backs and gruelling rehab. This was a cakewalk in comparison.
"I can't imagine what it would be like to have your dominant hand casted to strengthen the weak one," I said. "I think I would punch a hole in the wall with my cast."
Of course, as a parent making the decision for my child, I might not have ever had a cast on either hand.
"It's called constraint therapy," Crystal chuckled.
"For a reason," I said.