Sunday, December 29, 2013

Answering the Impossible Question - Part One

In a heated discussion several weeks ago, when I was trying to discuss access to someone who thought that a store with only one step was accessible, this question was shouted at me: Just what do you disabled people want anyways?

I figure when I stop being 'Dave' or stop being 'the other person in the conversation' and become 'you people' the chat is pretty much over.

Funny, I can feel some of you trembling right now, but not to worry I'm NOT going to try and write anything that attempts to answer the question "WHAT DO DISABLED PEOPLE WANT?" I am aware of the fact, and am reminded from time to time, that I am NOT a spokesperson for 'people with disabilities' or 'people who are gay' or 'people who are fat'. It's impossible for anyone to speak to the collective experiences of a 'people,' I resolutely remain simply a person who is each of those things who writes in a personal, not collective, voice. I'm going to give you some examples of what I want as a person with a disability - complete with examples. This is going to be a five part series. Here are the first four things I (that's me, Dave Hingsburger, speaking in my own voice about my own perspective) would like:

Yesterday we went to the Royal Ontario Museum to see several exhibits, one of which was the Wildlife Photographer of the Year exhibit. When we showed our membership upon entering the museum I asked the young woman where we'd find the exhibit. She gave me directions. Now there are several different pathways to get to the exhibit but the directions she gave me put me on the one accessible pathway. She didn't say, "Oh wheelchairs go ..." She just answered my question with information that would work for me as a wheelchair user.

1) I would like to be able to ask for information and get information that is pertinent to me as a person who uses a wheelchair. It's astonishing how often I ask for information and am given generic information that works for everyone but me. I've been sent to stairwells that I'd tumble down and die if I tired to navigate. I've been sent to washrooms that are not accessible. I've been directed to places where there is simply no possible entrance.

Getting on the elevator I got in a politeness tussle with a man who insisted that I get on first even when I said, "We'll all only fit if I get on last." Then he said, "I'll take the next one." I said, "There's no need there's lots of room, it's just that you need to get on first." Finally he got on and then when I backed in he said, "Oh, I see why you wanted me to get on first.

2) I would like to be seen as an expert in my own disability needs, my own space needs. If I say, you need to get on first, or could you open that door, not this door, I'd rather not have an argument or discussion of any kind about it.

While on the elevator another fellow, who had heard me say that we were going to the Wildlife exhibit began to chat with me about the exhibit. He was enthused about it, was going back a third time, talked about how spectacular it was. Asked what my interest was in seeing it. Listened to my answer. It was a delightful chat between two enthusiastic museum goers. He got off first, as I'd asked him to, and as he left he waved a cheery farewell as he spirited off to the exhibit.

3) Chatting about something held in common, person to person, that doesn't devolve into a discussion of my disability in any way - why that's just lovely.

In the exhibit, which we got to moments after it opened - we do this to avoid crowds. There were about 15 others there looking at the spectacular display. Really spectacular display. Within about ten minutes we'd figured out each other's pattern of viewing pictures and accommodated everyone for pace and space. I thanked others, others thanked me, for consideration.

4) Civility and common courtesy comes, at least in part, from a willingness to adapt to those around you. It was odd, to the point of being shocking, for others to recognize that while they were adapting for me, I was also adapting for them. Negotiating space and pace is something that is never done for one person in a crowd - although the way people talk about it you'd think that when they do it for me, it's adaption, and when they do it for each other it's not.


Tamara said...

I like that the 3 out of the 4 examples were positive. And I like that the other one figured it out and said it aloud. Looking forward to Part Two ...

I do agree that the world of disability is very diverse; and when I read about what all moms of kids with disabilities want, I generally find I'm not well represented.

william Peace said...

As a person with a disability I want one thing: equality.

Moose said...

It never stops to amaze me how other people think they know better than you (the generic you) what you need.

Personally, I find that it comes from some combination of self-absorption, lack of a will to listen, the need to be "right," and the need to get accolades for how awesome they are for helping the poor suffering crippled person.

Nope. I'm not bitter. Not at all.

Anonymous said...

Yesterday, going into the library, someone insisted on holding the door, even though I asked him not to. "It's alright!" he said and wouldn't move. And looked shocked when I told him that "No, it's NOT alright".

It might seem rude, but I also have severe cigarette allergies, and I do not like people that I don't know standing so close to me. He might mean well, but he could also send me to the ER. And I don't like needing to explain that each and every time.

Why do people who want to help NEVER ask me what I want? Is it that hard to say "Would you like me to hold the door?"

B. said...

Thanks, Dave. Such a familiar list. It's so nice to know that I am not alone in getting the treatment. This is a big subject. The first word that popped into my head after thinking about the question 'what do I want?' was respect (for everyone as the rule not the exception).

clairesmum said...

You...a person...Dave.

much better than "you people"

Ron Arnold said...

I find mindful awareness is a necessity in life. It's not really 'taught' by any societal institutions that I'm aware of - yet, mindfulness of self and mindfulness of others would go a long way toward 'getting there.'

Mindful people are generally good at self-organizing and adapting to the environment (including other people) around them. (Google self-organization in Hanoi traffic on you tube.) Granted - there are exceptions - I mean mindfulness doesn't mean squat if there's no elevator around when you need one.

An aside: It's been a long time since I've seen you in person. (I'd gone to a number of your presentations in the 90's.) I'm glad I stumbled upon your blog and plan to come back frequently. I have always appreciated your perspective. : )