Sunday, December 13, 2009

Imagine no one has to imagine

There are questions I've heard so often about my disability that Meredith once put together a FAQ list for me to hand out. But not every question made that list.

One of the other questions I've been asked is "What's it like to be a quadriplegic?" usually followed by "I can't imagine!"

My answer to that is no, you probably can't imagine, although you may try , with the misguided help of maudlin movies about disability, on the one hand, or inspirational tales of people climbing mountains, on the other. You'll read stories about quads who want to die and stories about quads who help others find better ways to live. You may tap into societal myths and assumptions about disability, through no fault of your own because we are surrounded by them. You may base your ideas on the few disabled people you've met and generalize from there how it is to live with a disability. And, sadly, you may avoid being around disabled people because you are so worried that you'll say or do the wrong thing as you try to imagine what it's like for them.

To all that I say - please, don't imagine what it's like. You're bound to go wrong with that approach. Living with a disability is a personal experience, shaped in part by economic, class, race, gender and other issues. It is also based on personal response. Some people adapt, others do not and there's a whole range in between.

This is not to say we should judge anyone's personal response to living with a disability. We don't go around condemning nondisabled people for how they respond to life, so why should we judge disabled people for how they respond to living with a disability or, for that matter, for getting things done differently?

But we do as a society. And the doing things differently part is still a huge issue when it comes to many of the assumptions, that begin with the unfortunate word itself - dis-abled. Nothing could be further from the truth of my experience. In fact, I've accomplished more since I acquired my disability than before.

For example, I do some things differently at work, but the way I do things at times (and this is a little known fact) is better than the way I used to do them when I was nondisabled. I take more copious notes, for example. One colleague was amazed to discover the level of detail that my method of taking notes provided one day when we needed to find information out quickly. In minutes, I went through hundreds of pages of documents in a way I never would have discovered if I didn't use assistive technology.

The point is, it's wrong to assume that living with quadriplegia (or any disability), is a disadvantage in every way. It's wrong to think of it as black and white. It's wrong to assume that doing things differently results in an inferior product.

We must get rid of the Sunday night TV movie mindset too, which has for years trapped disabled characters in a story arc that resembles a comic book superhero. Adjusting to living with a disability is not exciting enough, I suppose, to show on the big screen, so Hollywood has to embellish. The truth is that, just like nondisabled people, I have good and bad days. I also get tired, get the flu, get good news, see friends, and experience everything nondisabled people do. The everyday mundane details of my life, which I don't blog about because it would bore you to tears, would never sell a book. Do you care what kind of coffee I drink? Does it matter to you that my cat woke me up at 4 am by banging a door repeatedly because he was out of food? Probably not.

It is only in getting to know and being around someone who is living with a disability that the "I can't imagine" approach gets fixed - or cured- as some of my friends would say. When you see a disabled person in a cubicle next to you or speak with her over coffee and they become a neighbor, a friend, a colleague or a committee member, then you don't have to imagine what it's like.

That's the day I dream about. Imagine when no one has to imagine because we are living shoulder to shoulder.


Liz said...

Interesting post. I am not normally in a wheelchair. Last winter I broke my foot and spent time in a soft cast. My husband and I were in a big box store one day and so I got one of those little scooters, so I wouldn't have to walk everywhere. It was an interesting experience. I'm short, but I could reach a whole lot less while sitting in the scooter. I felt nearly invisible, to tell you the truth.

I know this is about a mental illness instead of a physical one, but "Blessed with Bipolar" talks about living with bipolar disorder -- and the author is not offended by being called crazy, screwy, loony or any of those other synonyms for the mentally ill. (I'm not sure I would feel the same, by the way.) He finds gifts from God in his disorder -- 36 of them, as a matter of fact. He feels you can use the disability, the disorder really, as a means to succeed -- you can not only survive it, but also use it to be a success. Interesting stuff.

Ruth said...

Thanks for your comment. You raise yet another good point about diversity within the disability community. There are those who believe in God, those who don't, those who have visible disabilities, those with invisible disabilities, etc. All more reasons for not generalizing a "correct" or "right" or even "better" way to live with a disability - any more than we place that kind of judgment on the nondisabled for that status per se.

Liz said...

I so agree with you -- people are people, and to generalize about any "group" is to miss the individuality we all have. I have a sister who is a nun. And many years ago (before her order went to "regular" clothes, so she was in her habit), we were all out to brunch. And someone came by and said something along the lines of "bless you for all you do." And the woman left. Now, I know she had the best of intentions, but how demeaning to assume that all nuns are wonderful, prayerful people without a negative thought in their heads! I assure you, my sister can be quite the sassy girl. Everyone has their individual foibles.