Sunday, November 09, 2008

I Cease To Be



This picture was taken moments before the tragedy.

To begin ...

We had a big day planned. Ruby and her Dad were down for the weekend and we were going to a movie, going shopping, cooking, eating, reading big books with big pictures ... yep, a big day. We got to the movie theatre about ten minutes before the movie was to start. After selling us a ticket the clerk told us that the elevator was broken down and sure enough we looked over to see a line-up of people with disabilities waiting for the repairs to be completed.

I joined the line up and grew increasingly impatient as the start time of the movie approached. I'm never late for movies. I like the previews, I even kind of like the ads they play. I'm paying for the whole shebang. Finally the manager shows and heads down to the basement to reset the elevator's computer controls. Um, OK. Now the line is very long. I had no idea that people with disabilities made up such a large portion of the movie going public. I had no idea we were such an economic force. Really. It was a long line.

One of the theatre staff walked by and made reference to all the 'wheelchairs' waiting for the elevator. Now I'd been quiet about the elevator status, after all these things do happen. But, I was extremely pissed about being referred to as a 'wheelchair'. I am not my chair. It's the person in the chair that bought the ticket and will see the movie.

When the manager rode us up in the elevator, he'd stayed on to take everyone up, I told him that I was extremely annoyed about being referred to in a manner that was literally depersonalizing. He apologized, gave me a wack of coupons for free movies, and sent me on my way. Joe and I rushed to the theatre and got there after the previews but before the movie. Mike and Ruby both waved as we came in and we settled in for the adventure.

Afterwards, Ruby decided to ride with me as we headed to the car and Mike took this picture as Joe paid for the parking. We then were off shopping. Joe parked the car and he and Mike got out to unload my wheelchair from the trunk. I knew instinctively that something was wrong. I openned the door and called to Joe. He came round to me looking ashen. My wheelchair had broken. Just broken. One of the cross bars underneath had snapped off. It was fine when we put it in the trunk but it was broken when we arrived.

We drove immediately home so I could start calling round to wheelchair sales places to see if I could get another chair. My chair is a bit wider than usual so I had little hope. While I called Joe, Mike and Ruby went to finish shopping. I couldn't go with them.

Today, still no chair, I can't go where we'd planned today. I will be home.

I will not be ...

I will not be at Chapters.

I will not be at Tim Horton's.

I will not be in the mall.

I will not be at Cora's.

I will not be ...

Suddenly, I do not exist.

Suddenly, I am nowhere that I planned to be.

Suddenly, I feel social death.

Suddenly, I just am not ...

Perhaps I was wrong to complain at the theatre. Perhaps I did a disservice to the woman who called me a wheelchair. But you see I had thought that I was not my chair.

But maybe, really, I am.

18 comments:

Glee said...

Now you are speaking rubbish Dave! Get yr perspective right man! hug.

But a crummy debilitating event that's for sure - heart sinking.

Glee

Heather said...

it is so precarious isn't it? To hang on to a good sense of yourself is very hard to do. One moment it's great and you feel affirmed and you have your place in the world and then, in the blink of an eye, a comment, a look, or an accident or 'event' (like a broken crossbar on a wheelchair) hits you at your heart and all of the walls start tumbling down. I am sorry.
I don't know you Dave but I would like to be able to assure you that you are indeed much more than a "wheelchair" and that what you do through this blog teaches, encourages and inspires us. Through your writing we get a strong sense of a whole person who has passion, insight and courage. I don't want to down play the importance of your wheelchair in your life...but it facilitates your living...it doesn't define who you are.
I hope that while you wait for the repair you find some balance in your perspective and other enjoyable, life affirming, companionable things to do. I hope too that the frustration of your situation doesn't leave you in that dark place of questioning and doubt.
Thank you for all that you are...

Belinda said...

I am so sorry that you are literally grounded and hope there is somewhere you can rent a wheelchair today or tomorrow.

The photograph! It is absolutely beautiful. You look besotted, in love; as you should be with little Ruby.

Lisa said...

I am sorry Dave, you are definitely more, much more than a wheelchair. However, I can't imagine how debilitating it must feel to know you have to suspend your plans because of a broken wheelchair.
Lisa

Andrea Shettle, MSW said...

Dave,

Sorry this happened to you. But, no, of course you're NOT your wheelchair.

I know this is advice-giving after the fact, but might it help to have a back-up wheelchair on hand, at least at home? (Which wouldn't help when on the road, I know) A friend of mine who uses a wheelchair usually tries to keep her old wheelchairs (and gets them repaired as needed) when buying a new wheelchair, just so she can have some sort of back-up on hand even if it isn't a perfect or ideal wheelchair.

Reading how devastating it can be for you to be without your wheelchair for even short periods of time makes me think of the millions of people in developing countries with mobility impairments who also need wheelchairs in order to have any true independence or mobility -- but who don't have them. There are people in developing countries who are essentially trapped at home, in bed, 24/7 for year after year, all due to the lack of a wheelchair.

As much as I feel for you right now, I'm also so glad that you don't have to join their ranks: in time, you will have a functioning wheelchair again. And until then, you are obviously able to remain connected to the world via your computer --an option not available to the people with mobility impairments who also happen to be among the 1.6 billion people in developing countries who still, today, in the year 2008, have no access to electricity.

(More info on wheelchairs in developing countries at http://www.whirlwindwheelchair.org/, including a collection of articles, papers, and photos.)

I hope your situation will be remedied swiftly.

Andrea Shettle, MSW
wecando.wordpress.com

OneSick said...

It was lucky the chair chose to break when it did. How much worse could things have been had it broken with you in it?

One Sick Mother

Andrea Shettle, MSW said...

Oh, totally off point:

Just wanted to thank you for, not only doing those occasional (even if non-scientific) polls, but also leaving up the results. I recently used the poll results from your poll on "the most frustrating thing about disabilities" in a power point presentation I did. I used it to emphasize that many of the limitations people with disabilities experience are created by our environment, and by other people, not just the impairments themselves.

Although I had seen the poll (and participated) when it was active, I had not copied down the results at the time. I didn't think of it until I was creating the power point presentation. So it was helpful to be able to come to your blog site, scroll down the page, and re-locate that poll so I could refer to it. Thank you, Dave.

See, Dave ... you're more than a wheelchair ... you're also a really great blog site ;-) And, of course, a great companion for Ruby in and out of your chair ... and a great partner (I'm sure) for Joe ... and so many other things besides.

lina said...

ok, firstly, wow has Ruby ever grown - and changed - wow - great pictures! And it sounds like you're in for a crap day....and in a crap mood - can't say that I blame you. And I know by tomorrow you'll remember that you're not a wheelchair...and you were right to be angry - as you're right to feel crappy today. Hope tomorrow is a better day - and maybe today was meant to just be on your own, quiet time is good for all of us.

liz said...

You are not just your wheelchair. You are currently not as mobile as you usually are, the same way a suburbanite is immobilized when his or her car is in the shop. A suburbanite is not a car but a car is necessary for a suburbanite to do the simplest of tasks.

You are not your wheelchair, but your wheelchair is necessary to you.

Hugs and kisses

ntmjbmom said...

Having been "grounded", in a way myself, in a hospital room, for 8 months..tied to the bed as he has put up a brave fight against cancer..I could feel for what it's like to not be able to move about like you are used to.

I missed the normal running about with my other children, and being part of the flow of life.

I know they are very different experiences, but it came to mind when I read your post.

It's so hard to feel powerless..and like I had slipped into an alter-universe that I could look outside the windows and seeing others running about normal life and feel like I was unable to move but three feet from his little frame.

But I've also learned a lot about waiting and the constructive things that can happen in my heart when I am "grounded".

Hope your grounding is quick..and that you are your "mobile" self really soon..but you are still yourself no matter what.

Hugs,
Amy

John R. said...

....I think it is time that we get a Wheelchair Repair Association instituted....In the US we have AAA and that seems to be successful for cars that break down....why not have the same type of organization for wheelchairs and those who use them????? Hmmm, maybe a proprietary endeavor!!!!

otherwise....

I am in constant training mode at my agency when staff refer to the people we support as;

"he's a down syndrome"....
he lives in a "behavior house"....
the "chairs" eat first......
and so it goes...

...the reality is that it is a constant battle to teach people who limit their understanding of people with disabilities with their use of convenient and oh so inaccurate terminology and description words. ....

I am of the belief that staff and the public alike are more comfortable using that type of language because it keeps those with disabilities at a clinical distance......
....it sucks....

you are a man....you use a wheelchair....people need to get it, deal with it, give you access to things and that is it....

the fight continues....we will teach them eventually...

We got your back, Dave!!

Now call, 1-800-ChairRepair

ntmjbmom said...

(meant to say "as my son was in the hospital)

Heike said...

You know, i hate it when people say "wheelchair bound". You are not your chair, you are Dave. But the chair gets you around. Liberates you. So you need the damn thing, and whithout it you are house bound. Hope it doesn't last too long - and try to make the most of it. Is your couch accessible yet?

Anonymous said...

Hello,
I've been reading Chewing the Fat for quite some time (never commented), but finally decided to make my presence known. And I'm very sorry to hear about the broken wheelchair.

But this is as good a time as any to respond to something I've noticed on various blogs. I want to point out another possible interpretation to being referred to as "wheelchairs," like the situation you described. Could it be that the word "person" is omitted not because a wheelchair-user is being objectified, but rather the opposite, that the humanness is so obvious that it doesn't need to be mentioned? Couldn't it be similar to saying "Look at all those cowboy hats!" or having a route designated for "motorcycles only."

Or I think of a situation in which I was insensitive. I was looking for someone I had never met in a crowded lobby, and when we met (I was late), he asked if I had trouble finding him. I replied, "No, I was told to look for the wheelchair, and here you are" (or something like that). Obviously I wasn't denying his humanity, but humanity was something he shared with 100 other people in the room. The wheelchair was what made him easy to recognize. Now, looking back, I see it may have been really rude. And I certainly don't mean to condone it. But at the same time, I wonder if the hurt derived from such statements may sometimes be due to false assumptions about those who said them or the attitudes behind them. I don't know. But it's bothering me, so I decided to share...

Thanks for your thought-provoking blog.
Cheryl in Illinois

Lene Andersen said...

Every day, I walk (!) around thinking I'm independent and out there, part of my community. And then, every now and again, I'll get a flat tire or there'll something else with the chair that'll trap me at home and I realize how fragile my sense of being a person, equal with others is (well, I insist I'm equal, society has a tendency to quibble). It's why I hold forth about not being wheelchairbound (pardon the gagging noise) - I am not bound, this chair liberates me.

Thank you for this post. It's an important one.

p.s. and you were right to complain. Not just because you were right to challenge the words used by an employee of the theatre, but you got coupons!

Anonymous said...

You exist, all right.

Hope it's sorted soon.

Shan said...

Just catching up after my weekend away and....I'm sorry your chair broke! What a thing to have happen during your few days at home.

I hope it doesn't take long to find another.

XO

Anonymous said...

You are not a "wheelchair"

You are the beautiful man, with the beautiful child in the picture.

On another note....wondering why the universe has chosen to "ground" you at this time......