Sunday, October 04, 2015

The Disability Voice

I heard his voice. Not because he was yelling, or because he was being unduly loud, but because he was speaking with quiet emphasis.

I knew, without seeing him, that he was a wheelchair user. Not because he, or the party he was speaking to made reference to the chair, but because of the words he was using.

I could not hear the other person but I knew that they were a non-disabled person desperately wanting to help. I knew this only because of the tone and the words of the person whose speech I could hear.

We were grocery shopping and I was coming up an aisle that would end just where the fridges are for milk when I heard him speaking. He spoke with the "disability voice" which combines these features:

-- gentle insistence that rose to firm insistence that was precisely calculated such that it couldn't be considered rude

-- just the right amount of gratitude for an offer of help that was being turned down

-- a tone of voice that said both 'I appreciate your offer of help' and 'I don't need your offer of help'

-- weariness at having to say the same words over and over again

-- a slight, almost not noticeable, anger that didn't know where to go because he was turning down someone's determined and insistent kindness

I came round the corner, and sure enough, there was a man with a disability with a bag of three bags of milk in his hands and a store basket on his lap. He looked over at me, I looked at him, he said, "Hi, how are you?" like we were old friends. I greeted him back. At that the other person said, "Well, if you are sure you're OK, I'll leave you to talk to your friend," then quickly left.

"Thanks," he said.

"No biggie," I said.

He put the milk into the basket and off he went, without needing a lick of help.


Saturday, October 03, 2015

Jeopardy Bound

Photo description: cartoon of a person tied into a wheelchair with the words: Wheelchair bound? OR Person who uses a wheelchair
Joe and I settled in to our Friday night, luxuriating in the idea of the weekend ahead of us. Alex was his usual charming and genial self, he's part of the reason we like this show, and the game was fast, with the champion making mincemeat of his opponents. Then, out of nowhere, a clue is read out which used the phrase 'wheelchair bound.' It happened too quickly, it's impact so immediate, that I didn't catch the entire clue.

I caught enough of it to know that the term was used descriptively, in the present tense, and wasn't referring to the dim dark past where terms like that were routinely used. Before I could react with words, Joe reacted with a more guttural form of 'egad!' Somehow, without any real reason, we thought Jeopardy would be more evolved in its understanding of language and of the impact of language.

Here's a show with a huge reach, using language which depicts disability in an archaic manner. Our fight for language which represents us rather than demeans us is far from over. As a wheelchair user myself, I find the term 'wheelchair bound' offensive primarily because the image it brings to mind is inaccurate. I am not bound by the chair, I'm freed by it. It gives me the life I live. But I don't need to tell any of you that, do I?

I posted this on Facebook when it first happened and many have suggested that I write Jeopardy. I have done so.

I'm now asking you, if you saw the show and that kind of language bothers you as it does me, or if this blog is enough to motivate you, drop them a line. The show was on October 2nd ... so ... here's the link: Jeopardy

Friday, October 02, 2015

Without Legs!?!

Image result for down syndrome climbs everest
Photo Description: Teen With Down Syndrome on Everest
You know, sometimes people otta just freaking use Google before they speak. So some dude from the tourism department of Nepal in talking about their wish to ban disabled climbers from the mountain said: ‘Climbing Everest is not a joke. It is not a matter of discrimination – how can you climb without legs?’



It's been done.

Over and over and over again.

I'll admit I don't get why anyone, disabled or not, wants to climb Everest. We went to see the movie Everest and that was quite enough of an adventure for me. But, in the end, it doesn't matter that I don't get it. What matters is that people want to do it, even though it's dangerous, and that people are often quite changed by the experience.

The decision to ban a whole group of people based solely on a prejudicial notion of who disabled people are and what disabled people can and can't do, is, quite simply, offensive. What's even more offensive is that the facts of the matter don't matter. Disabled people, of all stripes, have climbed Everest. Even, and this will shock the whole of the Tourism Department ... people without legs!!!

It's odd to me that our achievements are invisible when it comes to demonstrating that preconceptions and prejudices are outmoded and even dangerous. Instead achievements are turned into inspiration, which is about the viewer, not the viewed, and thus made almost meaningless when it comes to making actual attitude change.

I don't follow the world of climbing. I'm not from Nepal. I couldn't identify Everest from a mugs line up of mountain peaks, but even I know that Everest has been climbed and climbed and climbed again by people with all sorts of disabilities. Eli Reimer, a teen with Down Syndrome climbed 70 miles to base camp simply because he wanted to. But none of this matters because these stories are turned into stories about 'can do it' attitudes and 'conquering' disability rather than demonstration of personal skill and ability, the equalization of dreams, the adaptiveness and creativity with which people with disabilities approach challenges. No, what we've done is motivate some abled bodied person to 'try harder' - rah us. I do wish they'd 'try harder' to see us as flesh and blood people who climbed a fucking mountain.

In tourism guy's mind, we haven't, as a people, climbed Everest.

Which we have.

That's the fact.

The fact behind their inspiration.

Thursday, October 01, 2015

She Said

Photo Description: Child's wheelchair, metal frame is bright yellow.

I was caught in the same line-up.

The wait seemed interminable.

The clerk, slow and bored.

Two spaces ahead of me were a young mother with her boy.

He sat in a jolly, really jolly, bright yellow wheelchair.

He was bored.

I was bored.

We were all bored.

"What's wrong, Mommy," he asked.

"I'm just tired," she said.

After a pause he said, "I wish you had a chair to sit in like me."

She smiled.

The woman between mom and child and me, said, "He doesn't understand what he's saying."






She said.

Wednesday, September 30, 2015

Hmmm, The Future?

As I mentioned yesterday, Joe and I had arranged a leisurely day off between traveling and lecturing. We got up that morning and had time to read, mess about on the computer, linger over tea and breakfast, it was a great start to the day. We then decided that we'd catch an movie, the one we wanted to see started at 11:40 am, a perfect time for us, so as it got closer to the time, we headed out.

And ended up having a very odd, a bit disquieting, but wonderfully hopeful, adventure.

The mall, itself, was perfectly accessible. I mean PERFECTLY. For example, when you pushed the auto door opener, both large doors slowly swept open leaving lots and lots of room to go through.We felted as if the mall had thrown it's arms open to us, welcoming us in. We headed to the movie theatre and saw Everest, a literally chilling movie, and then had a late lunch and wandered about. Here's what we encountered:

- a restaurant that had a sign up stating that they were able to substitute veggie chicken for real chicken in any of the dishes that they had. Their menu was varied and fully catered towards meat eaters, vegetarians and vegans.

- in the same restaurant seating was available at various heights, making it perfect for me in a tall chair.

- a tee shirt store that had all sorts of tee shirts hung up on display, two of which had rainbow flag motifs with the word 'pride' on them

- a movie theatre that had it's accessibility policy displayed right at the box office, including stating that for persons with disabilities who had a support staff, the support staff would not be charged

- staff in store were the picture of diversity, and that picture, as isn't typical, included those who had both physical and intellectual disabilities

It was simply, and oddly, amazing.

I say it was disquieting because I'm not used to being in a place where welcome is just naturally present. Nothing seemed forced, nothing was done to draw attention to the various ways that the mall was inclusive. It just was.

It just was.

As Joe and I were stopped in our tracks looking at the LGBT tee shirts, I said to Joe, "I don't know how to feel, I'm so used to feeling unsafe as a gay person or unwelcome as a disabled person that I don't know how to react to this place. It's disquieting in a strange way."

Joe agreed.

It's like this is the future we imagined, we fought for, and now that we stumbled into it, it's hard to believe it's true.

But it was.

It was hard to leave to go back to the hotel.

Tuesday, September 29, 2015

Necessary Silences

Another hotel room that isn't quite accessible. Another round of adaptations. In some rooms I can do this ... in other rooms I can do that ... in rare rooms I can do both. This time we came down a day early so that Joe and I could have a quiet day together. We don't get many of those so we were looking forward to it. When I saw the room, I knew that there were going to be some real problems. I also knew, from hearing the front desk answer a phone call, that the hotel was sold out. So there was no possibility that we could get another room.

Yesterday morning I tried to do a routine thing and almost fell. Almost to the point that my hear beat wildly in my chest as I grabbed for a bar while praying it would hold. It did. Today, I decided not to do that thing and to do something, not as good but at least possible. I'm here now, ready to go to work.

None of this I told Joe.


He won't know until this mornings drive to the venue about the near fall. He won't know about the adaptations and the decisions I made. Like, I decided not to speak to anyone at the hotel about the problems with the room. Which is something I always do.


Because our day would have become completely about the room and the issues and the problems. And so, I kept my mouth glued shut.

Because sometimes I want him, I want us, to come first. We planned this day. We looked forward to it. And we had a wonderful day. Together.

Now it's work time, now I'll fess up, but only because I'm telling you, and I don't talk behind his back.

Sometimes, my disability needs to take a back seat to my marriage.

And yesterday, it did.

Monday, September 28, 2015

I Am What I Am But He Isn't

I am a proud gay man.

I am a proud disabled man.

Both of these things are identities.

The difficulty is that one of these is much more valued than the other. It is not uncommon for me to read articles that reference sexuality which respect the identity that people feel with how they express their love, how they exist in the world. In fact, that difference, that identity, is often celebrated with flags and slogans and marches down the street.

It is also not uncommon for me to read articles which reference disability which do everything they can to make the 'disability' not real, not important and certainly not an identity. "Label Jars Not People!" is a slogan that's been around for a long time and just won't die. "He doesn't let his disability define him!" "She doesn't consider herself disabled!" These clearly indicate that DISABILITY is something that people are rewarded for disidentifying with and triumphing over. The idea of acceptance of one's difference, unlike every other minority, is no where in sight. Further, the idea that disability as a difference from which a prideful life can be lived is simply laughable to many.

These two things came together in an article and a video that I just read on the LBGT website: Pink News. I'll give you a second to go read it ....

...  OK. Did you watch the video? Read the article?

First, the headline. I've never seen an article about any gay person anywhere on any website that ever said about sexuality, about being gay, "He never let being gay define him." In fact, typically, 'being gay' and identifying, or as it's called, 'coming out' is celebrated. But in the context of his disability, this seems like something that can be said ... in marked contrast to what Paul said in the video, right up front, "I am homosexual." That sounds like a very clear statement of identity, that sounds like he is proud to be 'out' and proud to claim that identity.

Later in the video, it's said that "Paul's family has made an effort not to label their son." Well, that shows too, while Paul speaks openly about his sexuality he never mentions, even when asked a direct question about difference, his disability. I find this disturbing - particularly in a video that is primarily trying to get people to see people with disabilities as worth of respectful language. But when someone with a disability can't or won't use respectful language in reference to themselves or their disability it reeks of shame.

Now I need to be very careful here, this was written and edited by someone other than Paul or his family and it was written to convey a particular message. I don't know what was left on the cutting room floor, or whatever they have now in the digital world. So I don't want to be talking about them in any way, or criticizing them in any way. I'm looking at the product that was created and put out for public view. That product, that video, not the people in the video.

By stating that the 'r-word' should never be said, then creating a video where no other word for disability is shown, the viewer is put in an odd place. Further by suggesting as the video does that people with disabilities need to be respected and then never show how self respect is manifested, the viewer may be led to the belief that the best way to deal with disability is with silence and pretence. Never speak of this shameful thing. When you meet someone with a disability pretend that they aren't.

I admire the intent of the video, I don't like the result.

The headline disturbed me, but then the video explained why they when where they went. In trying to  respect the message of the video, they write about a man with no identity, no pride, no community which to call his own. I think that's unutterably sad.