Image description: A drawing of a finger pointing to the letter 'C' on an alphabet communication board. |
Once done and paid, the driver returned to his seat and we were off. I like chatting on the bus. I do. But a lot of others don't. So I am careful when trying to engage someone in conversation. It's easy with those who have buds in their ears and eyes on their phone. That's a world I daren't disturb. I asked her if she, like me, was going home. She shook her head and then made motions in front of her. "Ah, you are going swimming," I said. She nodded. I asked her if she was going to the Y downtown. It's near me and it made sense that as she was headed in my direction that might be her destination. She shook her head. I thought of other places downtown for a second and then realized I knew no other places. "Where are you going then?" I asked.
She looked down at the communication board. It struck me at first that she was asking permission to use it, but she wasn't, she was indicating that the answer would require the communication board and the question was about me - am I going to accept her way of communicating. I'm guessing she's asking because she gets the answer 'no' a bit. I just nodded. She pulled it out. She pointed to three letters and I knew immediately where she was going. It's 14 letters if you count the space between the words, so I guessed she wouldn't mind me stating the name of the pool. She nodded.
From there I learned her name, and she mine, we talked about how long each of us had been in the city and where we were from originally. I learned that she is very proud of her Canadian provincial identity and that, while she loves Toronto, she needs to go back home regularly. We talked, back and forth, right up till I arrived home. The trip flew by, as it always does when in conversation with another passenger. That's my selfish reason for WANTING to have a chat - I get home quicker.
I said goodbye and wished her a nice swim. She said goodbye and wished me a nice evening.
Nothing really remarkable happened.
That was until I was telling someone about the trip and meeting her, I had mentioned it to this person because she was from the same province had the same kind of provincial pride about her heritage as did the woman on the bus. I made some joke about the province and the people. But instead of, as she would normally do, brushing the joke aside, she did something different that I found very odd. She told me that it was really, really, nice of me to have had the conversation on the bus. Somehow the woman's use of a communication board made the conversation extraordinary and that it said something extraordinary about me.
That wasn't the first time that happened. I tried telling a couple of other people and both of them saw the conversation in a way that it hadn't been experienced. No matter how I tried to present the conversation as a conversation, the mention of the woman and her communication board, turned the conversation into an act of charity, an act of giving.
I was afraid of even writing it down here, 'Are people going to think that I'm writing this so they think I'm presenting myself a man of great kindness who speaks with people who have communication devises?" So, I want that to be the point of this post. What is there about this particular conversation that turns a woman with dignity and humour and wit into an object of pity. Even from other disabled people?? Even from 'US'?
I know that I could tell the same story and leave out the fact that she communicated through a communication board. But why would I, why should I? Do I need to sanitize herself of herself? Do I need to make her fit for presentation to the world? If that's who she is, that's who she is. She wasn't ashamed of her board. Why should I suggest shame by eliminating it from my description of her and our conversation. It's really just a freaking alphabet isn't it?
It annoys me to see all these stories on the Internet, you know the ones, where people get all sorts of praise because they simply acted decently with someone with a disability. They become 'Saint for a Day' and they beam with divine light from pictures they take to memorialize their kindness. Disabled people do not exist in order for people to prove their humanity.
And a conversation with a woman on a bus is just a conversation with a woman on a bus.
It says nothing about me.
It says nothing about her.
You learn nothing about me.
You learn nothing about her.
It's just a conversation, not an act of charity.
Damn, I await the day when the entrance of disability into a story doesn't change it from a story into a parable. I await the day when the existence of a person with a disability in a story doesn't make it always have a moral. I await the day when people with disabilities can be in a story without it saying a single, damn, thing about the story teller.
Just playing devil's advocate here: The buck stops with us. If we don't want to make a big deal about the communication board, we should not mention it to anyone. Most people want to please, and often echo what we say to them. You mentioned "communication board" to someone, and so did they.
ReplyDeleteFrank, I welcome any kind of advocate here, the devil's included!! My point, though, is that I should be able to describe her communication style, in the same way that I describe someone as a wheelchair user, it's just fact. The issue isn't that the people I told mentioned it back, it's that they found something 'special' about me because of how the communication happened. I've heard people congratulate staff in a store for speaking with me so nicely - my disability made them 'nicer' for just being decent. That's the issue for me.
ReplyDelete" people get all sorts of praise because they simply acted decently with someone with a disability. They become 'Saint for a Day'"
ReplyDeleteThank you for writing about this Dave. I get very frustrated when I see news stories with this kind of slant. It continues the idea of someone as an "other". I remember hearing you speak "many" years ago about the comment "you must be very special to work/live/be a parent to "those kind of people". You went on to say something along the lines of the hidden meaning is that only special people could put up with that, and I'm not special so keep them away from me. (I'm paraphrasing so I hope I haven't distorted your message, but that stuck with me at the time).
It's about being seen as fully human, I think. Not as 'less than' non-disabled people, but not as 'special' either. I've done jobs where people say 'oh, that's so wonderful, I could never do that" and I usually say that we all have different talents. There are lots of things I 'could never do', and it's wonderful we are all different. I don't want to be seen as 'special' because I am able to be present with people who are suffering. Clairesmum
ReplyDeleteI think that there definitely is an artificial elevation going on here. But I also think that in a world where there is so much unkindness--intentional or unintentional--kindness is worth rewarding.
ReplyDeleteI'm not "inspired" because you had a conversation with the woman, but I do think it was kind of you to give her the opportunity to share her opinions and humor and wit with you. It should be routine, and we should all do that, but we don't.
However, one person's kindness can remind us to be more kind ourselves, and that's the part of your actions that's worth a little attention, I think.
Brilliantly stated Dave...and Frank V just proved the point of your article.
ReplyDeleteFor some reason it's hard for people to see disability as it is. A normal part of humanity.
I wonder if mentioning the communication board is also important because it identifies augmentative communication tools as a way that some people communicate. Many folks would not have noticed the board or known what it was for. By describing a reality where this is a way that some people communicate, it presents an experience of which many are unaware. In addition, given the wide-spread erroneous assumption that folks who are non-verbal lack intelligence or anything to say, seeing examples that disprove this fallacy can only benefit all of us. While it is certainly not the responsibility of folks with disabilities to educate everyone else, the erasure of the communication board's presence only obscures the diversity of human experience and of ways in which we can communicate with one another...
ReplyDeleteWell I mean I learned you like to have bus conversations. But other than that...
ReplyDeleteThe other side of the coin is that you were wonderful because you did something - nice. And you're disabled, so it's inspirational. That's 'inspiration porn.'
ReplyDeleteYou could not have mentioned the conversation properly if you hadn't written that she obviously loved her device - and you couldn't have said that if you hadn't mentioned she HAD a communication board.
I think I would have liked to learn how her device worked, if she was willing to demonstrate - I wish the kid with CP down the block used his when he goes out. It is hard to get to know him. It is too fragile to go with him, though, and I don't get out much, so we've never communicated much. I wish we did.