Sunday, October 09, 2011

Welcome Wagons

"Hello," she called out. I turned to see a really attractive woman, my age, scooting towards me. "May I see the controls on your chair," she asked. I turned so that when she arrived she'd have a good view of the joystick and box. One look and she said, "I thought so."

She then told me that she'd just received her new chair and the controls were unwieldy. She demonstrated all the movements it took in order to set the speed and how it required great effort on her part to make any of the adjustments. She had been told that her controls were now standard and that it was what everyone wanted. That led to a real discussion.

I told her of the man who had stopped me outside Metro, to ask about my tires. His tires were narrow which caused him to slip in the snow, mine are wide and give me great traction. I told her that I was inordinately proud of my tires at that moment. Glancing down, I saw that she had good wide tires with a strong tread on them. I said, "Hey, there ma'm, you've got a nice set of tires on you, yourself there." She batted her eyes and looked all coy and said, "Why, I blush."

We howled.

I wished her well and she went one way, I another.

Later, I saw her paying for something at the cash point in the pharmacy. She hadn't noticed me but I called out, "I just knew you did drugs!"

"I know, I look the type."

Again, we laughed.


A day or two later I was leaving the liquor store and I saw him sitting quietly near the entrance. He was clearly waiting. I wanted to go speak to him, but didn't. When I saw him again in the grocery store, I had to. I rolled up and caught his attention.

"May I ask you a question?" I asked.

He nodded and I continued. "As you know they've installed these weird bars in the liquor store which are supposed to be wheelchair friendly but make it impossible for me to get into the store through the main entrance. I complained but they told me that they were designed for wheelchairs and wheelchair users can get through. I told them I couldn't. They said I could. I insisted I couldn't. They said that every other person with a disability could. And further more, I was told, they'd had no complaints. I didn't seem to get them to understand that I was actually making a complaint so that wasn't true." I was surprised at the way this all poured out of me but it did. And it felt good.

He listened to all of this and then told me that he, too, couldn't get through the bars and that he used the exit and simply asked people to step aside so he could get in. I told him that I did the same but I resented a store being accessible, becoming inaccessible yet claiming accessibility. He told me that I might want to consider going to the Human Rights Commission. But his face showed what I felt, weariness with the struggle. We continued talking and he noted how I rode high in my wheelchair while he rode quite low. "I can ride higher," he said, flipping a button and rising in his chair, "and I can tip back," flipping another button and slowly tilting. My chair only rolls, which is all that I need.

I thanked him for his time and was off. It was terrific to feel unburdened for a few moments. To be able to talk with another about his experiences, to be able to share a moment where explanations don't need to accompany questions, was simply freeing.

Next time I was in the liquor store, I found the manager. Now I knew I wasn't alone, that others had been forced into entering the exit, I felt a renewed vigour for the fight for accessibility. It's amazing how the non disabled can convince the disabled that our experiences aren't valid, that we are alone in our need, that we are somehow the cause of our own inaccessibility. A moments kinship changes that.


Most often when I'm out and about and see or encounter others who use chairs, or walkers, or canes, I note them only because they are in my field of vision. I note them slightly differently because of their slight differences. I note them because it means that suddenly I'm less alone in my world. But, though I note them, I have no real need to talk to them or seek them out. Some seem to even feel a little uncomfortable when our eyes connect, like they are telepathically saying, "all we have in common is the chair, don't presume anything further." I get that and it's true.

But there are moments, like the two above, when disability seeks disability. When one needs to speak to another member of the diverse community of disabled people. Like any minority, there are more differences than commonalities within the group itself. But those commonalities do shape a world view and inform experiences. Those commonalities give common ground. And sometimes they are cause for connections.

In those moments there is no real need for introduction. One simply begins, one simply expects acceptance, one typically receives openness. I have been approached many, many times by others in wheelchairs to be asked a question about my chair, about accessibility, about the best way to get from here to there. These encounters feel as if, in that moment, we let the struggle for inclusion and welcome fall aside and say, "Hey brother," or "Right on sister." Aloneness drops away and a kind of frankness about the world as it is becomes possible.

I always leave refreshed or renewed in some way.

I am grateful for the disability community. I give thanks for the moments where I am less alone.

(Image of a turkey holding a Canadian flag with the words 'Happy Thanksgiving, eh!' printed beside the turkey. Turkey looks happy, probably because this blogger is vegetarian)


ms k said...

when i was using a wheelchair (i have fibromyalgia, and some times have been worse than they are at the moment) i felt very alone. i was pushed (from the side, most often by shopping carts operated by goobs stuck in their own minds), i was fussed at for being in the way, i was ignored by waitstaff who expected me to sit silently while someone else ordered. (i got rude. i'd say "and i'll have a waiter/waitress who recognises me AS A PERSON WHO CAN ORDER FOR HERSELF!")

community is wonderful, no matter where you find it. your exchanges with the woman you spoke of gave me the giggles...disability doesnt mean you cant have a LOT of fun in your days! :D

Beth said...

Noticing chair to chair seems pretty obvious: if nothing else, you're at the same eye-level while being over 7.

Me, other people out with wheels, I usually at least give the smile and nod. Well, I might not if the person is obviously "not disabled" (such as anyone who looks really defensive about it or anyone recovering from injury). Those people who I think might insist they aren't disabled, I still give a small smile, but not a nod. I acknowledge people my age more, especially those out alone or doing things themselves. We're a rare breed, young adults with wheels, so it's really something to see someone else. And... there's flirting. I became disabled just as my teen years ended, so I really noticed that I wasn't seen as nearly so desirable in my chair. Even though I'm in a long-term relationship, a little flirting is nice when I can get it.

I've been asked about my rollator a lot by others who have one. Mine is different than most in its structure and how it folds. (It's also pretty stylish, if I do say so myself!) I've gotten comments. I've gotten questions about it and where I got it. I've gotten questions and comments about my lovely accessories (basket I made out of placemats, Velcro-attached bag on the frame, and a fold down expandable cup holder -- I love them all!). Oh, also on the decoration I put on the front. (Yes, I take pride in my rollator.)

I comment other people's too, from time to time. Maybe I like the color or love the bag, say.

I once got into a conversation with a woman in a wheelchair that I met in a store using my rollator. I asked her about her gloves because I hadn't been able to find the color and she asked me about my rollator. We got to talking about wheelchair and walkers and rollators... and disease, actually -- something very rare to come up naturally with a stranger. It was nice.

Oh, and I like the incidental seeing people I know from the disability community, the groups I'm a part of. It feels to me like a little more than the standard "Hi, fancy running into you" of people you know from work or school or church. There's also a hint of celebration that we're both out doing something, that we're out in the community living our lives.

Amanda said...

Totally agreed.

Additionally: When those differences involve your brain, this seems to become several times as intense.

I don't mean like... that anyone with the same medical diagnosis that happens to involve the brain is going to be similar to each other.

I do mean, though, that communication has never been easy for me, verbal or nonverbal. When I do interact, all of my energy is going into making sure that I'm using the right words (i.e. the ones that mean what I'm thinking), not giving off something too confusing with my body language, etc. And knowing that no matter how careful I am, none of it will ever be enough to truly bridge the gap, even if I'm met halfway, which rarely if ever happens.

If I'm around other people with developmental disabilities (of any official category), I'm more likely to meet someone who can mutually read nonverbal signals with me. When that happens, it's like an experience becoming three-dimensional for me that is never three-dimensional ever.

In 10+ years in various self-advocacy movements, I've met a handful of people whose body language is mutually comprehensible with mine to an even higher level.

And I've met one person whose brain is configured so similarly to mine that rather than being an exhausting chore, communication just happens and we don't need words (although we can use them, and somehow they're not as exhausting as usual either).

(And before anyone tries to say how rare that is in general -- trust me, it's rarer when your brain type is a minority within a minority. And if you've never had an atypical brain type, I'll just explain that the communication-related isolation goes a lot further than ordinary human alienation. Because it's not about "feeling like nobody understands", it's about not being able to communicate simple concepts -- sometimes not at all, sometimes seeming like you're doing it but you're just repeating words that have nothing to do with what you're thinking, sometimes doing it at least partly right but not without your brain feeling like it's on fire and total exhaustion and the world disappearing and total shutdown or slamming your head into things or something else along those lines.)

And in that situation... it becomes not just about shared experience of what it means to be disabled (including what it means to be disabled in a nondisabled world), it becomes about literally your thoughts and perceptions and communication being cut off from everyone else unless you manage to find someone whose brain is compatible, or at minimum someone who has done a lot of work to learn how to communicate with someone like you.

(And also? People thought to have no communication whatsoever? Often do have ways to communicate with each other on at least some levels. I've had entire conversations with people where we noticed the connection but all nondisabled people in the vicinity were totally oblivious, and that kind of thing goes on all the time under the noses of people who ought to know better.)

Karyn said...

Dave, you have helped me to understand something that I have been thinking about lately. I have an adult son who has down syndrome. When he was a child and we were out places other women would come up and tell me about their adult children who have down syndrome. I never quite understood why they did it.
Now when I see a mother and her child who has down syndrome I have this strong desire to reach out to them.
I think those mothers that approached me were trying to tell me that I was not alone as I am trying to say to other mothers that I am a part of their community also.