Tuesday, February 09, 2010

Coming To Terms

When in Scotland lecturing, during one of my breaks I spoke with a guy with a disability who had attended my lectures several times over the years. He, unlike me, was born with his disability and therefore has a lifetime of experience with what it means to be disabled and what it means to live with a disability. I respect that. I wish I had more social contact with my 'elders' in the disability community.

As we were chatting he had a caution for me. He said, "You've got to be careful not to become grateful for what should simply be expected." I assured him that my character was never thus, and when I spoke, I was being entirely honest with how I saw myself and how I predicted my development as a person, or rather as a disabled person. I thanked him for his advice.

Last year Joe and I flew in and out of Chicago airport making connections between cities. Our experience there was so incredibly humiliating. Airport personnel making sure I was degraded in every way possible. When we landed, I waited until I was in the car and then I cried. Joe simply quietly put his hand over mine and we went home.

When we were getting ready to fly to Edmonton, I began to have sleepless nights and cold sweats. I wanted to go. I wanted to do the work. I had specially prepared something I wanted to say. But deep down I was terrified of the trip. Not the travel but the interactions that travel required. I have lived a life of facing personal fears and demons, so I just gritted my teeth and decided that I was going, hell or high water. The evening before travelling we set the alarm but it was nerves that woke me.

Travelling to the airport I 'fessed up to Joe that my nerves and short temperedness had been as a result the anxieties born on the trip through Chicago. He just nodded and I could tell that he was worried too. Well, we got to the gate and were greeted professionally and ably assisted. Nice like. Everything went smoothly. Wonderfully even.

We landed, took a deep breath and I said, 'Yeah, but there's the trip back.' So, we dug down, did the work, had a wonderful time with both the host and with the audience. Thought maybe it was mattered we'd hauled butt to Alberta. Set the alarm but once again was wakened by anxiety.

At check in the Air Canada staff actually joked with us as they answered our questions and checked us in. At the gate we boarded without incident. On landing my wheelchair was there and waiting for us. We were back. No drama. No horror stories. Just pleasant interactions, capable service from people who clearly knew how to provide service to those with differences and disabilities.

So here I am, right where that fella from Scotland predicted I'd be, grateful for simply getting what people should expect - normally. It seems that part of living with disabilities is simply dealing with the day to day challenges of getting by. But the greater part is simply dealing with the vagaries of attitudes, biases and prejudices of those encountered along the way.

I shouldn't be grateful for the fact that I wasn't subjected to hostile or negative attitudes. But I find that I am. And I think, maybe, I'm OK with that.


Anonymous said...

Yeas, I agree with that guy in Scotland - but I think a fair amount of the people who work in the service industries still need lots of positive feedback ...if it's deserved...to continue improving what others take for granted. Conversely, those who humiliate and make life difficult should be named and shamed each time so that everyone, not only those who have a disability, can boycott that particular business and express their support too. Everyone likes to feel 'rewarded' for their good efforts and hates to be 'shamed' so maybe it would change some attitudes - who knows?

Belinda said...

Our friend Susan actually became, and had fun for a while as, a "secret shopper." These are people who get paid for going out and having dinner somewhere or shopping somewhere, and giving feedback to companies on customer service. I think that might be a great sideline for some people who read this blog. It might actually change things.

Andrea S. said...

To "Anonymous" at Feb. 9 4:11 am:

I see your point ... but I think you may be missing Dave's.

There is a difference between demonstrating appreciation for a job well done, or properly done, which is what you're talking about here, and the kind of "gratitude" that I think Dave is talking about here.

Sometimes non-disabled people expect and even demand that disabled people demonstrate, not merely proportionate appreciation, but a kind of groveling gratitude that we are allowed to exist, that they deign to treat us with something resembling humanity, that they actually bother to extend to us even half the respect or service that everyone else receives automatically. If we fail to demonstrate what would seem an over-the-top kind of gratitude from anyone else receiving twice the level of service, some non-disabled people respond with hostility.

Fortunately, we aren't always held to these kinds of expectations. In fact, for many people with disabilities, these expectations are the exception rather than the rule. (Please do note that "many" does not mean "all.") But it does happen. And because decent service happens more rarely than it should for many people with disabilities, when we actually receive it, we do sometimes inevitably find ourselves feeling a sensation of gratitude (not just appreciation) that, for once, we were treated with some modicum of dignity and respect.

But to unquestioningly accept our own sensation of overwhelming gratitude for a level of service that should seem ordinary is to unquestioningly accept the idea that we shouldn't ever expect anything better. We may feel the sensation, but that doesn't mean it's okay: too often, the kind of gratitude that puts us in tears or elicits other extreme reactions is a sign that we are missing too much the rest of the time, not a sign that we have received something special.

It is possible to deliver positive feedback where it is due, to people in the service industry or elsewhere, and even demonstrate a certain level of proportionate appreciation without giving in to the more extreme levels of disproportionate gratitude that I think Dave is talking about here.

Kristin said...

I think it can be both ways. While decent treatment SHOULD be the norm, you can also be thankful for it and appreciate it when it happens.

I LOVE Belinda's idea of secret shoppers as a sideline.

Mary said...

I feel you. I have a similar temperament, one of the reasons I love your blog so much! I've also faced a lot. When I start to pity myself, the "Haven't I had enough suffering for one lifetime? I have a list of people right at the front of my mind who could benefit from a little suffering! Pick one of them for once." variety invariably prevails.

Plus, as a very fat person, I've encountered the "ew, gross" variety of discrimination my whole life. Being a fat person on a scooter magnifies it by an order of magnitude. Because now I'm doubly undeserving, triply if you count my lack of wealth.

I try to gently call people on it when they humiliate me, assuming or pretending that they didn't mean to do it. "You know, most disabled people feel ashamed when staff do X." Or not so gently: "You realize that responding to my reported eating habits with "that can't be true, calories in, calories out' you called me a liar." Note the lack of question mark - this is a statement.

BUT - I don't always have the luxury. When traveling there's no time, in medical visits you might not have access to another expert or the ability to wait another six months to visit another, at a hotel you might be to exhausted...

And I'm not always in the mood to do disability 101.