Monday, December 1, 2008

My viability rating varies

Because I live in an able bodied world, I know that I have a viability rating.

I know that because I see people approve of assisted suicide for those with disabilities, who think they are no longer viable. And because I see and hear acquaintances give periodic reports on how I'm doing.

They say things ranging from "You should be as independent as possible" to "You're so independent, but you like it that way". Such comments have led me to a place of Zen consciousness where I make no decisions based on such casual feedback. At times it's like an Olympic spoof, where people hold up signs with scores from 10 to 1. Images like that make me smile on a good day.

Viable is defined by Merriam-Webster as "1. capable of living"; "2. capable of growing or developing"; and "3. a: capable of working, functioning, or developing adequately <viable alternatives> b: capable of existence and development as an independent unit viable state> c (1): having a reasonable chance of succeeding; (2): financially sustainable.

Breaking this all down in terms of disability is a fascinating project. You have your viable states, in which you are adjudged to be capable - or not- of existing and/or developing independently. I clearly don't qualify for that, since getting something to eat by myself involves help, as I told a friend last night who watched me (i.e. gravity) drop salad onto a plate, amazed at "how much better I was". I explained that gravity and Meredith did the work, that one shouldn't assume that meals pop out of my refrigerator ready to eat, cut up and placed on plates, bowls, trays etc. that I can manage. (Had she arrived earlier when the groceries were delivered, she would have seen how useless all of that is to me until someone able bodied gets the food out of the bags, cuts it up, etc. and at that point I suppose I would have been seen as not being in a viable state.)

It is defintion c(1) that is most amusing to me sometimes, that of having a reasonable chance of succeeding. Now that I have an accessible van, when people ask me if I need help getting into my car, I say no rather confidently, knowing I can manage with the help of assistive technology by myself. Yet getting a dollar bill out - or any task requiring dexterity- can take much longer or be impossible for me to succeed at. And this is what's amusing- is that when assistive technology isn't the answer and human help is needed, I get a low viability score. It's not quite fair, is it, that the 2.0 card is held up when they simply haven't invented a wallet that shoots out dollar bills via voice command?

I could go on and on about how being seen as not being financially sustainable is another problem for those of us with disabilities with staggering unemployment statistics or how ironic it is that the word viable, which comes from the French word vie (life), is applied in a way that denigrates the value of our lives .

We need new definitions for the word viable, ones which don't start with the word "capable". Those put a "cap" on how our abilities are defined, limiting us to the norms of the able bodied world. They lead to terms like "handicapable", where we buy into the idea that any human being has to somehow prove his or her worth. That robs people of their dignity, labels them, scores their performance - or lack of - on a playing field that not only isn't level, but may be one they can't even get on.

I'm no less capable at what I do just because I'm physically dependent on someone else to turn a page so ultimately I can complete my work product. Yet to define a person as being in a viable state only when capable of existing and developing as an independent unit - sends quite the opposite message.

Sometimes after an inane conversation with someone about my level of independence as a person with quadriplegia, I find myself barely able to stop giggling. I'm not proud of that, mind you, because I realize that if you don't live with my disability, part of being viable has not included developing a sense of humor about how our society defines independence. Until we all can laugh at that and embrace the diversity that the experiences of the disability community bring to our world, I just have to accept that my viability rating will continue to go up and down in each and every encounter.




11 comments:

Meredith Gould said...

Well I, for one, am proud of you for giggling. Beats feeling bummed to the point of homicide! (Which of course you couldn't do because it would mess up your legal career.)

Wheelie Catholic said...

As Mark Twain said - Humor is mankind's greatest blessing :) I wonder if he giggled....

jenniferfitz said...

So who exactly are these people? Who grow their own food, do their own taxes, and never, ever, need to hire a lawyer? Among other marks of their total independence. I'd like to meet one. Curious.

All the people I know depend on others to do for them what they can't do themselves. No one seems to really mind. What with that being the normal state of human affairs and all.

Wheelie Catholic said...

Jennifer , you're right of course. Interesting how some things are seen as socially acceptable forms of dependence, while others -alas- are not...

FridaWrites said...

Apparently these Independents also make their own string, weave their own cloth, sew their own clothing, courier their own mail, make their own paper from raw materials found in the woods, find their Thanksgiving cranberries in a boggy marsh, etc. We're all interdependent.

Wheelie Catholic said...

Frida-
hehe a boggy marsh....maybe they're Pilgrims?

jenniferfitz said...

WC, if everyone who told me they were unable to do their own taxes were made to feel embarrassed and ashamed about it . . . we accountants would be a lot poorer ;-). I'm all about interdependence.

(But hey, let's say you were real Pilgrim material -- persistent, demanding, and owing your survival to other people's skill and work . . . that's okay. Human dignity isn't based on whether other people are glad we showed up. It's because we're human, end of story. Which means that, like or not, even these very annoying bystanders who make it their life's work to offend and insult innocent bloggers? They have human dignity too. Pretty cool.)

Jen <-- person who is plaguing the internet rather than doing something useful, like cleaning my kitchen. Human dignity being something rather different than kitchen dignity.

Wheelie Catholic said...

Jen- in all seriousness, as a Catholic I firmly believe each and every human being has dignity.

so all joking aside (however you took my joke)

I agree with you 100 per cent!!!

Bob said...

Which means that, like or not, even these very annoying bystanders who make it their life's work to offend and insult innocent bloggers? They have human dignity too. Pretty cool.)

The folks who are so arrogant as to treat pwd like that don't need protecting IMHO, Jenniferfitz.

jenniferfitz said...

WC, I'm with you.

(And remind me not to play around too much on a blog where people don't know me very well. So easy to miscommunicate. Really I should have just gone straight to the kitchen cleaning.)

Wheelie Catholic said...

Jennifer - Yeah - dealing with comments is not easy - whether leaving them, moderating, or etc. especially while trying to do real life. Or kitchen cleaning. Or whatever...