Tuesday, March 19, 2013

Comment on a Comment

An interesting comment was left yesterday, although I have to say all of my comments are interesting, that asks a good question, "just what the hell do we want?"

Here's part of that comment: Times we lament "Why don't people see me?", as at the art museum when they stand in front of the chair - and other times we don't want to be noticed or pointed out. It's hard to find a balance. Sometimes you don't want folks to notice the difference - as you are an adult like other adults, other times you want consideration for your needs. 

 It's true, of course, I have written about the invisibility that comes with disability - the fact that people step in front of me at museums and my magic disappearing act in line ups. In fact at the parade, I experienced two very different phenomena ... being singled out like I wrote about yesterday AND having people step right in front of where I was sitting on the curb. It was odd being highly visible and completely invisible at the same time.

So what is it I want? (I do not presume to speak for anyone else.)


In the case of my being at the museum, or being stepped in front of, all I want is ordinary courtesy. The same courtesy that is shown to others. Those people who stepped in front of me did it without any concern for the fact that they were blocking my view. They most decidedly did NOT step in front of other people standing. Once, and I kid you not, a couple apologised to Joe for stepping in front of him, and then stood right in front of me as if the spot was vacant. I just want the same courtesy shown to me as they show to other people.

In the case of being singled out for attention, all I want is the same degree of attention that is given to other adults. The generic wave to a group of people watching - not a specific 'how do you do little man' wave directed at me because of the fact that I'm in a wheelchair. If you aren't pointing out other adults then don't point out me. It's fairly simple.

So I guess, in fact, I want ordinary courtesy and ordinary acknowledgement. I don't really want anything more or less than that. Sometimes ordinary looks extraordinary - I want accessible bathrooms - because I want to pee - and that takes adaptation. I want accessible parking - because I want to be able to get to where others go - and that takes  adaption. But that's all with adapting environments.

I don't really want adapted social interactions. I want those to be typical and ordinary. I want the same courtesy as others, I want the same degree of anonymity as others expect.

I know this all looks like 'WHAT I WANT.'

So let me say that I also think that I need to be equally courteous. I need to expect the same treatment and deny the 'pity-privelege' ... 'oh please go ahead of me' or 'I'll take you next even though others have been waiting' ... it took a while to work up the courage to say 'no thanks, I'll wait my turn' ... only because I didn't want to be thought rude. So I want from others and I want for others.

One of the things I like about having a blog is this kind of dialogue that gets me thinking and allows me to be challenged by the respectful comments of readers. I have astonishingly nice commentary here on Rolling Around in My Head - even when people disagree or ask questions, it's all done with ...

courtesy and consideration for the feelings of others.

And that, folks, is all I want.


Anonymous said...

I admit, I have let people who appear to be struggling go ahead of me in line. I have done it for people who have a grumpy child, pregnant women,people with only a couple items when I have a cart load, elderly people, and for a person with a disability. The person with a disability was using a walker, and appeared to be very tired, slumped over and shifting their weight about as if they were uncomfortable. I didn't do it out of pity, but out of courtesy. I have been in pain and still had to go about my day so I could empathize.

I'm 41 and was raised that you give up your seat on the bus, let others go ahead if they seem to need it. Maybe I have offended people in the past, but I have never got anything other than a positive vibe. I'd rather err on the site of politeness, courtesy and respect. I get what you are saying Dave, that you want to be treated like everyone else, but wouldn't it be nice if everyone was treated with compassion and empathy? that it was the norm?

I hear people in Walmart mumbling about the screaming kids that are in there (Have you ever been in a walmart when there wasn't a screaming kid? lol)and I think, instead of bitching about it, maybe think about why the kid is there. Maybe he is sick and mom or dad needed to get him his meds after being at the ER all night. Maybe parent works all the time and has only this moment to get the weekly shopping done and juniour just has to suck it up?

I'm an able bodied fat chick and if I appeared to be struggling, I would hope someone would let me go ahead, lol.

Anyway, just some food for thought. I love your blog and the perspectives you present.

Anonymous said...

There is a version of the Golden Rule which says: "Do unto others as they would have you do unto them."

That's all I need - and it is indeed (un)common courtesy.

For those of us with a 'hidden disability' like ME/CFS, though, it is sometimes hard to tell what we need - for someone to put themselves into your position requires that they KNOW what that position is.

But to have someone stand in front of you in your wheelchair blocking your view of the parade, well, that just takes the breath away, doesn't it? What universe do THEY live in?

I'm surprised that you are willing to brave crowds. It is your right to go wherever anyone else goes - but I find being surrounded by people, people who become less caring and more boorish the more there are of them, very scary. Especially since I get tired very quickly, and have trouble standing and walking - but can look completely 'normal.' Taking my walker is always a difficult choice because it takes extra energy just to handle it.

I admire you for your willingness to try even as I have trouble emulating you.

John R. said...

Question and advice please!

I was at a rock and roll show this past week and was standing in "the pit". It was fairly crowded and lots of people were standing at the stage,belly-up. THe stage was at approx four feet high.....In comes a young man, with a high tech power wheelchair, using a respirator and with a ton of adaptive stuff attached. He was with who appeared to be his parents. He was assisted in to the pit and slowly made his way to about 10 feet from the stage. THis is a very loud and raucous rock and roll band who was performing and this fellow was obviously, like me, appreciative of loud and rockin' music. Lots of dancing and cheering and moshing (that is like dancing but not)

....several people moved from his way so he had at least a slight view to the stage but a few people were oblivious to his presence, stood in front of him and moved in front of him and occasionally bumped his chair, his adaptive equipment and were just plain rude. A few times I saw his companions move him one way or another, but he continued to stay for the show, watched the racy dancing going on to his left side and seemed to have a good time.

Here is my question, should I have asked the rude and oblivious people in front of him, after I conferred with him, to step aside so he could have a complete view of the stage. At his level and height in the chair, he was blocked. He did not seem to mind but I know if I was in his vantage point for the show I would have been disappointed. Should I have advocated with/for him??

John R. said...

Princeton Posse said...

Hi John R, No need for you to step in as an advocate, as I think you mentioned, he had others with him. Anyone else have an opinion?

Heather Simmons said...

Dave, I love your blog, because it's about your everyday experiences written in an everyday tone. (I'm trying to do the same at my blog about voice disorders). Have you met the Inclusive Design team at OCADU, headed up by Jutta Treviranus? They are doing some leading edge work in the field of disability and adaptive technologies. I could make an intro if you'd like. Heather heathersimmons@rogers.com

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Kristine said...

Completely agree! Totally and completely. And saying that we want "ordinary courtesy, no more, no less," in my mind, doesn't mean there isn't room for compassion and kindness. Compassion/kindness don't have to--and shouldn't!--go together with condescension and pity. If someone offers me a cut in line or something, there might be a reason that I'll graciously accept, or if it's unnecessary, I'll graciously decline. I'm certainly not offended by the offer, as long as you're not offended when I refuse.

For example, when I'm approaching a place like Starbucks, somebody will often come up and ask if they can open the door for me. That usually gets a "Yes, thank you!" Now that I've entered the Starbucks ahead of them, I'll usually turn and invite them to go in front of me in line. It seems like the polite return of the gesture. No big deal. And all totally different from the condescending person who feels the need to put on their kindergarten teacher voice to tell me how inspiring I am for going to Starbucks all by myself, or the overbearing person who forces their help on me after I've smiled and clearly, but politely, declined.

We discuss and analyze this stuff like it's this complex science, but it all seems mostly simple to me! Treat people with respect. Just like the posters in every elementary school classroom tell us. :)

Utter Randomness said...

I think there's a huge difference between being noticed and then treated with courtesy and respect and being stared at and treated like you can't do anything for yourself.

Unfortunately, the transit company in my city is going the wrong way with this. Their policy is that if you need time to get to a seat, or even to get to something to hold on to, you have to ask for it, except that policy doesn't seem to apply to the elderly. I even had one driver last week stomp on the gas as soon as I got on the bus and refused to acknowledge that I fell at all. The policy of having to ask for basic courtesy is apparently based on the advice of a focus group of people with disabilities. I cannot believe that any group of people with disabilities would recommend a policy that has people being injured because they didn't ask for safety and common sense.

I think there should be a balance found between automatically helping someone, whether or not they need it or whether or not you're actually doing the right thing (don't even get me started on people who hold the door from inside the frame, if I wanted to get hit in the back of the head with the door, I wouldn't have asked you to hold it), and only considering the safety of people who ask for it.

I don't mind asking for help, but I definitely mind asking for safety and common courtesy, if that makes sense.

Sorry if this rant is sort of off topic.

Anonymous said...

I love the term you used Dave "adapted social interactions". I think that speaks volumes.