An odd thing happened at the Duty Free.
We were both tired, but we stopped to pick up cheap beer and to 'spend a penny' as my Grandmother used to say. I rolled down the steep ramp and used the momentum to carry myself straight to the car. I locked wheels, swung off the footrests, got up and hoisted myself into the car. Joe went round to take out some of the food cartons that were cluttering up the back seat and after having deposited them, hopped in the car. Just as he was turning on the car and turning around to see if anyone was coming, he noticed that we'd left the wheelchair sitting alongside the car. If he hadn't looked, we'd have driven off without it. The mere thought fills me with horror.
I think this moment represents a huge step in my development as a person with a disability. Really. I do. It's hard to explain but I'll try by telling you another story:
When I first came to Toronto I worked as a classroom assistant with students who had physical disabilities. They were fully integrated into the regular classes in the school but had a segregated home room. The home room provided both a respite from the task of integrating the classrooms of others (difficult work, seldom honoured) and all sorts of adaptive equipment and a huge accessible washroom. There were two classroom assistants, one male, one female and one home room teacher. I wasn't much older that many of the kids in the classroom, having only just graduated from University, and I got along quite well with most of them.
One day, I was walking head of a woman who was powering her wheelchair along behind me, we were deep in conversation. She was the woman who introduced me to the idea of disability pride and the concept of 'embraced identity' for people with disabilities. She was far ahead of her time. So, we were talking. I walked through the door and let it close right in her face. I took a couple of steps and realized, 'Oh, Gosh, I'm supposed to be here to hold doors and make access possible.' I opened the door to find her laughing. She said, 'You forgot there for a minute didn't you?' I admitted that I had. She said, that I shouldn't worry that she simply forgets sometimes too.
When disability becomes fully part of you, it's hard to see it represented as something a concrete as a wheelchair or a held open door. I was in the car, therefore, that's all that was needed. Somehow it was easy to forget something that both is me and isn't me at the same time - something like my wheelchair.
hmmmmm
I just read this over and I'm not sure I'm making any sense at all. But I'm convinced that this happens to all with disabilities. I think I've seen people with Down Syndrome lose their extra chromosome down the sofa cushions. I think I've seen people with cerebral palsy have moments when their cerebral forgets their palsy. Then we all have, 'oh, yeah' moments. And rush to get what we've left behind. Because it's part of us. Because we value what it is and what it means. Because it is who we are even though it isn't what we are.
hmmmmm
I'm confusing myself.
I've decided not to wipe out the post and start again, because I think I'll end up with pretty much the same mess as I have here now.
Thing is - we almost drove off, leaving my wheelchair behind - and somehow I think that's significant.
I get it and I didn't get it.
ReplyDeleteI understood this post but I don't know what I understood.
I like it, it made me smile for some reason.
I think it's significant too.
Dear Dave,
ReplyDeleteI gues what you experienced was a moment of "just being yourself".
Once I wrote about the need to always plan ahead due to my disability and that I almost always am not able to forget that fact that I only have limited resources.
But sometimes I experience moments of just being comfortable with myself, with the people and the situation around that I forget my limitations and my "difference".
These are the times I am just being happy with being me. I dont think about my daily breathing difficulties or my "dodgy ticker".
I forget that I am not able to do certain things without thinking about them.
I am comfortable with being me despite being disabled.
Julia
"mybrainyourbrain": I love your comment! I know exactly what you mean ... even though I don't! :-)
ReplyDeleteDave: I do understand!
I briefly knew a young woman who was deafblind while she was studying at a university I was working at. (I, too, have been a student at this university, though I was simply a staff at the time I knew her.) One day she contacted me by email to ask for my help guiding her from her dorm building across campus to the post office. It seems that she had gone home for winter break and forgotten to take her white cane with her when she returned to school that January. Because when she was home she didn't really need the cane to get around--she was familiar with her home, and was with her family. Then she had left for the airport in a rush at the end of vacation and forgot to take her cane with her, so her family had to mail it to her. Hence, her need to go to the post office to pick it up. I led her across campus, she got her cane, we had lunch together, and she was fine on her own from there because she had her cane again.
She needed her cane ... her cane was important for her independence and mobility in places that weren't home or otherwise intimately familiar to her ... but she wasn't her cane, it wasn't fused with her identity. Your chair is vital for your mobility, but you aren't your chair either, you're just Dave. Who rides in a wheelchair, when you aren't sitting somewhere else.
I don't know if I'm saying it any more clearly than you did! But I hope it makes sense.
I understood your post and didn't even find it confusing...maybe I didn't understand it! ;)
ReplyDeleteI think this goes along with the post the other day when you forgot to call ahead to the hotel.
I feel like I should say Congratulations but I'm not sure what for. Okay...maybe it is confusing.
Agh, this reminds me of remembering ADHD meds.
ReplyDeleteWho thought that was going to work?
YOU'RE INATTENTIVE, YOU JUST NEED TO REMEMBER TO TAKE THESE PILLS EARLY IN THE MORNING.
I loved this post!
ReplyDelete... probably even more because I have recently arrived at the forgetful stage of my life.
Thanks for this, and for so much more.
I think I get it. Two examples perhaps to clarify if I've got it?
ReplyDeleteWhen I was in college, the first many weeks of class I'd need to know the exact room number and remember very explicitly how to get to and from the class. But as the weeks progressed it'd become almost second nature, until I no longer actually remembered the room *number* just the room (which could be difficult when trying to direct someone else there). It just became so integral that I started to ignore it.
The other is about being trans. Before I had surgery on my chest, I was almost CONSTANTLY aware of binding and needing to be aware of others' perceptions of my gender. One day with my partner in a school art studio, I hadn't worn a binder (can't remember why) and was so deeply in the task of creating art and being with someone I knew I could trust to see me the right way, that I somehow forgot about my physical body. Until the moment a stranger walked in. I'm not sure I would have known that I had had that moment of "bodilessness" unless I had been snapped out of it.
Are either of those what you are talking about?
I followed! My quarter can be sent to me at... just kidding.
ReplyDeleteI advise the honour society I joined on college. At a recent planning meeting, they discussed an upcoming service project - participation with Habitat for Humanity. The secretary is very excited as this is an event she has coordinated and on which she has worked very hard. She was practically bouncing up and down as she asked the other officers if they would be able to attend. Then she asked me, with the same expression of hopefulness and happiness. "I'd love to, and I'm delighted that you asked, but I think I'll leave my spot (limited number of volunteers) for someone else since I'm pregnant and have a disability. But thank you for including me."
I confess, I enjoyed the shock on her face as she gasped, covered her mouth, and said, "I forgot!" (You can't miss the pregnant belly at this stage, nor the crutches that go almost everywhere with me.) The fact that she forgot tells me she sees a whole, complete person who is no less capable in the things she CAN do, and does not see a person bound by limitations and only the CAN'Ts, as those who perhaps don't know us have a tendency to limit us with.
"I am only one, but still I am one. I cannot do everything, but still I can do something. And because I cannot do everything, I will not refuse to do the something I can do." --Attributed to Helen Keller.
I feel that way all the time dave. And then you have that oh yeah moment :D I choose to see that as a sign I am in fact well adjusted :D
ReplyDeleteThis blog has totally awesome readers ... I have really enjoyed your stories and your willingness to wrestle with what I was trying to say. I think that, sometimes, the disabled experience needs to be really talked about so we can understand ourselves through the experience of others. Thanks!
ReplyDeleteI get it. A friend and I once accompanied the ladies from both our group homes to a state park for a cookout. We had a long back and forth about whether or not we could barbecue there. As we came over a hill at the park, me carrying a large bag of charcoal, following by ten or so women with intelletual disabilities, people were staring at us.
ReplyDeleteI turned to my friend and said 'see, I don't think you can bbq here - people are staring at me'. She hesitated for a minute and said 'I don't think they're staring at you.'
Although I viewed the ladies in our group were a collection of individuals, I had totally forgotten that our group might appear a little 'different'.
This post makes sense to me and I think you are right. It does mean something.
ReplyDeleteI got it, one of the pieces of your training on the ethics of touch that has always stuck with me was that sometimes those are not abusers "forget" they are staff as the person shines through not the disability and they are genuinely attracted to the person.
ReplyDeleteUnderstandable (although not acceptable.) Funnily enough its the one aspect most of my colleagues object to the most but that is another issue.
Reading that back I wonder if it makes sense what I have written