Choices.
They are good right?
I know they are.
But there are the 'disability choices' that I have to make. These are, often, the hardest kinds. In the split second before making them, I sometimes envy the easy way the non-disabled live with choicelessness.
I was in the hall yesterday morning. It was Monday. It felt like Monday. My bus pick up time was ridiculously early, at least 20 minutes earlier than normal. This has me in the hallway, up and showered and shaved and dressed, at 5:55 in the morning. In my chair I am making sure that my footrests are firmly attached and that Joe has remembered to put my lunch bag on the back of my chair.
One of my neighbours came out of her apartment. She looked like I felt. She nodded in dim awareness that we were there, turned and trudged down the hallway. Choicelessness. Easy, simple, choicelessness. She's non-disabled, she has no choice but to be non-disabled. She turned and walked down the hallway.
Me, I am realizing as it nears time to push off down the hallway that I have a choice. I can push myself. I can ask to be pushed. Or, thirdly, yes a richness of choices, Joe and I can push together.
My brain wants me to be independent. Every other part of me wants to just be disabled and let Joe push me down the hallway. It's easier and faster.
And aside ... I am often referred to as lazy when I'm in my manual chair pushing myself somewhere. People who walk using the big strong muscles of the legs thinking it's easier, easier, to push a wheelchair. They have no idea how much extra work it takes, how much more effort goes into it. Lazy freaking walkers.
Another aside ... I am almost never called lazy in my power chair. Neither chair is an experience in lazy lounging - one involves the significant work of pushing, the other involves the significant work of driving on narrow sidewalks full of oblivious two-footers. I think that because my power chair is so tall, and I sit tall in it, it's harder for someone to verbally and physically look down on me.
Anyways, back to choices.
I've seen other people with different kinds of disabilities make the same kinds of decisions, the 'will I be disabled today' kind of decision. There is a coffee shop we sometimes stop at which employs people with intellectual disabilities. I was there one morning, just after they opened. A bleary-eyed young woman with Down Syndrome was working the till. I ordered a tea and paid with the only bill I had, a 20. She punched in the numbers, saw the big number representing the change I need to get back. She slyly looked over at a non-disabled co-worker, trying to decide if she should just work up the energy to give me my change or ask for help. She made my change.
I said to her, "I saw what you did there, you almost asked for help." She blushed and laughed, "You saw that?" I said that I had seen it and that I only noticed because sometimes I have to decide to be disabled or not. "My mom still makes my bed," she said and began to laugh, in seconds we were both howling as I understood the implication of her statement.
Yesterday, I made the decision to push myself. As I do most mornings. The mornings where I choose otherwise, I'm not proud of ... but then, what the hell ... it's my choice.
6 comments:
This is priceless: 'sometimes I have to decide to be disabled or not'
I live my life half disabled. I do as much as possible, walk when I can, use the walker and the orthotics when I must, a cane or walking sticks, too.
But if I can pretend NOT to be disabled, I often do it.
But it COSTS me a huge amount NOT to be disabled. Pain is a constant companion when I try to be normal, with the exhaustion that comes of expending ten times as much energy doing what a 'normal healthy person' does, as you say, without even thinking about it.
Because I still remember her, even 25 years later, my non-disabled self. And I miss her, even with all I've learned from NOT being her any more (good practice for getting old, BTW).
You don't have quite my choices. I can still 'pass' for a short time. Interesting thoughts.
Alicia
as a non disabled person, i know i can sometimes act in a way that my husband will offer to do what i would rather not do...i try not to indulge that part of me too often, tho....your writing is great, i felt like i could just see the expression on her face when you spoke to her....
I'm never sure which choice to count as the "win." There are all kinds of little things throughout my day that I can do myself if I need to, but it takes me forever, and/or costs an enormous amount of strength and energy, which may result in not being able to do the next "little thing" later on. So I have to decide every time, am I going to grit my teeth and do it myself, or am I going to swallow my pride and ask for help? Which one feels harder to do right now? Which is the smarter choice this time? The "right" choice usually isn't obvious, and even less obvious to the outside observer.
Good one. Thanks, Dave. And Kristine. I have explained it as not being on automatic pilot - making decision after decision, - choice after choice, etc., throughout everyday.
I was only in a manual chair for 4 months, but it made a huge impact on my life. I will never forget the hard work. How so very tiring it was. The sore arms, shoulders and blistered hands. How hard it was to constantly negotiate and not clip people or things with my legs straight out in front of me. I remember how vulnerable I felt being pushed, especially by young people my age who thought it was a lark (and sometimes pushed me ahead or let go). Terrifying. I remember using "disabled" washrooms and crying, having to have people in because I got "stuck" with lack of space or adequate bars. I remember the physical pain when others bumped into me. I remember the transfers to other places to sit and lay with no "helps". I remember the complete lack of understanding what I need and what it takes. I will never forget. I never let anyone else forget if they are building something or designing a building. Self preservation is never laziness.
I don't know if you've ever heard of Spoon Theory, but I'm reminded of that, reading this. Wise words. I'm recently having to learn to make that choice myself.
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