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.