So I have this disability. You do too. Or perhaps some day you will. But just so we’re in agreement: no one’s perfect. (I hope you weren’t feeling perfect. I don’t want to be your buzz kill.) If you are perfect (against all odds) you are unrepeatable, even with genetic counseling.
Being physically different is also unrepeatable. No two people with a disability are alike; no two people who have the same type of disability are alike. This matters as each disabled person, each man, woman, and child, represents a unique soul. What is a soul? Its the engine of amazement. Everyone has a sense of wonder. With wonder comes empathy. “What is a friend,” asks Aristotle, “a single soul dwelling in two bodies.” Accordingly the soul is the seat of astonishment and houses our ability to understand and share the feelings of others.
I backtrack: no two people with a disability are alike; no two people with the same disability are alike. No two blind people experience blindness the same way. In fact, there’s no such thing as “the blind”—the identifier breaks once you know real people who experience vision loss. There is more than one way to be blind. My pal Leo sees through his own periscope. He is the commander of a private submarine--the USN Leo and though his sighted options are limited, they're still fair. He drives his car in a gated community in Arizona largely because he can still do it. Sometimes he honks his horn. And though he's looking through a tube, the day is glossy and brilliant as old Kodachrome. Leo can tell you that while blindness is not always a preferred experience it's often more interesting than sighted people suppose. For some of us the colors are beyond compare.
Another friend--I'll call her Karen--(not everyone wants to be known for folly) runs through a field in Nebraska though she sees only light. But the light is so gold, so dappled and evanescent that her description makes you want to cry. The average sighted person can learn from her how daylight spins between brown and yellow tonic, the drafts she drinks between the clock and the sun. Just run beside her.
Sight is an immoderate thing, never static. It is, perhaps, the dearest sense. The flickering light of a fire, shadows on a hearthstone; the laughing element of sun on water; early morning eastern skies; the cold and steady light at mid ocean--many blind people know these things. Nowadays more blind people see something of the world than is commonly understood.
A phrase I like when thinking about disability is “presume competence”—in fact I like the idea so much I use it when thinking about everyone. Every soul, the engine of amazement. The house of empathy. I first heard the phrase when I came to Syracuse University to teach in SU’s Center on Human Policy, Law, and Disability Studies.
There's a very interesting article from 2011 at US News by Meryl Davids Landau which highlights the work of progressive college admissions deans who are seeing the advantages of disability inclusion on their campuses. Here's a taste:
"Some 45 college admissions deans from across the country gathered at Stanford University this past June to learn about high-achieving dyslexic applicants. Experts shared the latest research, and well-known figures—including California Lt. Gov. Gavin Newsom, financier Charles Schwab, and Delos "Toby" Cosgrove, a heart surgeon and CEO of the Cleveland Clinic—described their experiences coping with the disability.
"Our goal is to help colleges realize that, because of their intelligence, out-of-the-box thinking, and perseverance, these students can add luster" to their schools, says Sally Shaywitz, the Audrey G. Ratner professor in learning development at Yale University who helped organize the event."
From a disability studies perspective this is a hopeful sign. They key phrase that Professor Shaywitz offers is "to help colleges realize"--for surely, as those of us in dis-studies have long known, neuro-atypical students and colleagues have spent their lives outside the box and thereby bring fresh thinking to the classroom and the work environment each and every day. I would add though, that this is not simply true for high achieving students with dyslexia--it also holds for nonspeaking people with autism, blind students, students with profound poly-trauma.
A recent special issue of Disability Studies Quarterly devoted to autism and neuro-diversity edited by Ralph and Emily Savarese highlights the remarkable insights and imaginative atypicalities of autists and is critically important reading. I like what Jamie Burke, a Syracuse University alum (and autist) says in an epigraph to the issue:
"I must send forward my bold appreciation for taking the soul of this topic … to be shared among the many and diverse hearts who will attempt a new understanding. It can be very lovely when curious old patterns of comprehension shift to a more connected and true demonstration of the improved focus. My deep thanks, then, for the spirit of change and challenge."
“Taking the soul of this topic” is the key. Amazement and empathy. And let’s be bold, when amazement and empathy are at work (as the soul would have it) we also achieve curiosity.
One of the ways to achieve the curious soul is by imagining yourself in someone else’s body. Every one of us can easily imagine having a different body than the one we currently have. Now as a blind person I walk about, meeting and greeting people who are inexact to me. This is an aid in “seeing” them. But the presumption of competence is also about feeling—the soul insists it can be inside of anything. You could be a man or woman, but you could also be among the trees and beasts. St. Augustine wrote:
“[T]he soul by its presence gives life to this earth- and death-bound body. It makes of it a unified organism and maintains it as such, keeping it from disintegrating and wasting away. It provides for a proper, balanced distribution of nourishment to the body’s members. It preserves the body’s harmony and proportion, not only in beauty, but also in growth and reproduction. Obviously, however, these are faculties which man has in common with the plant world; for we say of plants too, that they live, [and] we see and acknowledge that each of them is preserved to its own generic being, is nourished, grows, and reproduces itself. (Augustine 1950b: Greatness of the Soul, 33.70)”
To presume competence is to presume life itself is encoded with harmony and proportion which we are often insufficiently aware of. But to presume competence is also to understand the soul is both simple and complex. Augustine again:
“When we come to a spiritual creature such as the soul, it is certainly found to be simple in comparison with the body; but apart from such a comparison it is multiple, not simple. The reason it is simpler than the body is that it has no mass spread out in space, but in any body it is whole in the whole and whole also in any part of the body. Thus when something happens even in some tiny little part that the soul is aware of, the whole soul is aware of it because it does not escape the whole soul even though it does not happen in the whole body. And yet even in the soul it is one thing to be ingenious, another to be unskillful, another to be sharp, another to have good memory; greed is one thing, fear another, joy another, sadness another; some of these things can be found in the soul without others, some more, some less; countless qualities can be found in the soul in countless ways. So it is clear that its nature is not simple but multiple. (On the Trinity, VI.2.8)”
When I imagine myself in another’s body I understand their joy, sadness, localized aches, for the soul “contains multitudes” as Walt Whitman said.
Being physically different in unrepeatable. Soulful. At once simple and yet more complicated than customary thought allows.
Empathy. Not sorrow. Imagination. Not presumption.