It's difficult to write about life as a person with a disability, especially personal perceptions of failures or limitations or restrictions as exampled by the preceding post.
Disability, in a sense, is a world with a greater gravity. Simpler things become more important. Life grows heavier, sometimes more consequential when confronting the minutiae of day-to-day existence. I complain about not being able to change a flat tire. I am angry, frustrated, and fraught with guilt. My existence grows more weighted with self-absorbtion.
And then there is this: a writer friend reads my story and says, "If its any consolation, I don't much like asking for help either."
Yes, of course. Obviously. People prefer independence, the ability to make choices and accomplish tasks. Ever self-aware person, disabled on not, can see it in the lives of people who live in this same world. The van upon which my wheelchair lift is mounted is a truck-style one-ton chassis. A flat tire? My wife, the only driver in this marriage, is not strong enough to change the tire on the vehicle she calls "Mrs. Jumbo." She grows angry because she must call for service.
A clearer metaphor of the nature of disability dependence, I suppose, can best be illustrated by regarding it as the tightening the circle of independence.
I'm lucky. Once seated in my wheelchair, I need no assistance, unless of course the chair has a flat tire. It is only when I need in or out of the chair that the noose of independence becomes tangled in the roots of need. Whether in bed or in wheelchair, I am there until I ask or receive assistance to move from one to the other.
For me, a person who moved from physical independence to physical dependence, the idea of limitations required a recalibration of emotions, a reconstruction of self, ethical lessons to comprehend how self fits into and relates to the world. It is a thing that didn't come easily. It may be a thing -- considering the anger, frustration, and momentary self-pity a flat tire can bring -- that will never be fully accomplished.
What I forget, I think, is that, as another writer said, "... independence is an illusion." That means, in turn, if I intend to tell you that my illusion of total independence -- to be free of asking for your help -- is different from another person's, I will have set myself apart from the mainstream. I will have segregated myself, which is the last place any person with a disability should want to be.
During one of my laments, a friend, a priest, once suggested to me that I might live as an occasion of charity (charity, in the Biblical do unto others as you would have done to you sense of the world). Another writing friend, more rationalist than mystic, put that difficult concept into secular terms, "Humans are meant to live socially, giving and receiving from each other. Perhaps you get to be more human--or experience humanity more--than the average American."
I wrote Seven Wheelchairs: A Life beyond Polio because I wanted to speak a truth about living with disability. The longer I live, though, the more I have begun to think that living with a disability is simply a different way of living.
"Everybody Hurts," R.E.M.