by Kari Pope
So I was sitting in church one Sunday recently—how I manage to endure life as a practicing Catholic PWD is, as C.S. Lewis would have put it, “another story and will be told another time”—when I found myself unexpectedly provoked by the priest calling “all people…equal in dignity, but not equal in ability.”
It made me flinch. But not for the reasons one might suspect. Certainly I’m no more enamored than many of my decidedly anti-Catholic acquaintances of those passages of Christian scripture which would seem to render us as helpless victims, ruthless villains, or something even further down the ontological scale. But I also—and this is the important bit—harbor no particular illusions regarding my own so-called ability level, despite the fact that, medically speaking, I have a “case” of CP that is classified as “mild.” I walk independently, most of the time. I talk, speaking clearly and concisely enough to coach legions of ESL students through the most complicated tongue twisters I can dream up. I bathe myself—albeit while sitting in a shower chair—and dress myself, even occasionally in heels for dancing in nightclubs. But I wouldn’t be telling you about any of it right now had I not finally learned to master my sense of “survivors’ guilt.”
This, like many phenomena unique to and yet typical of an increasingly collective disability experience, mirrors the experiences of human beings in many communities. You yourself may recognize it from any of the following: Your friend died in the car accident you caused while driving; you flew back from Japan the day before the March 2011 earthquake; you got over the swine flu, yet your cousin in Mexico didn’t. You can’t shake the feeling that you might have done something, perhaps even given your own life, so that another could have been saved. My twin sister once confided to me that, “I used to think that if I had not been born, then you would not have had cerebral palsy.”
I didn’t see what she had meant by that until I began to come to terms with my own lifetime of internalized ableism. Throughout that lifetime, especially upon meeting other PWD, I had been plagued by thoughts such as:
“She uses a wheelchair—why not me?”
“He’s blind and deaf—why not me?”
“She can’t talk and besides that, she drools—why not me?”
Growing up under a medical and charitable model of disability, I was presented with the image of a false god: one called by Nancy Mairs the “handicapper general,” who doles out disadvantages at will while adding or subtracting inherent value based on the “severity” of the disadvantage in question. Consequently, I fell to the idea that such dramatic—and therefore negative—differences in ability should indicate the same such differences not only in quality of life, but also in the grace to live life fully.
So I flinched that day in church, not at Father’s words, but at my guilt upon hearing them as I realized that, “Surely, if dignity is equal, then ability matters not at all!”
Now, lest you imagine that I should therefore either stop going out dancing or else start standing up to shower, let me put it to you as Martin Luther King, Jr., did:
“If a man is called to be a street sweeper, he should sweep streets even as Michelangelo painted or as Beethoven composed music or Shakespeare wrote poetry. He should sweep streets so well that all the hosts of Heaven and Earth will pause to say, ‘Here lived a great street sweeper who did his job well.’”
I love this quotation for the sheer force with which it moves folks to consider the contributions of every person, beyond reference to the biblical, medical, or charitable images that have poisoned people’s perceptions of ability and disability alike for eons. I appreciate the fierceness with which Dr. King dared to dignify a laborer among artists. Yet I find his thought problematic when I consider that he lived in a time at which a PWD’s chances of being hired as a street sweeper—let alone as a painter, musician, or writer—were slim to none. And in our own time, while our chances might be slightly improved, Lateef McLeod, Sunny Taylor, and others have boldly called into question the validity of traditional—read: ability-driven—measures of productivity and success at work.
I now call upon those hosts of Heaven and Earth for a new image: one driven as purely as possible by the dignity of people everywhere. Like many of my friends and colleagues in the disability community, I’m tired of the assumptions about, projections and classifications of disability that turn my honestly-lived experiences into a metaphor for someone else’s pain, struggle, or even triumph. At the same time, I’m not naïve enough to believe—whatever else I may cling to—that honestly living means being accurately perceived. That said I can at least hope for greater accuracy when I ask that, if you insist on making of me a metaphor, then please let it be a metaphor of my own choosing.
As a matter of fact, I seem to have found one already. Some weeks after that day in church, I happened upon this quote from French lyric poet Ponce Denis Ecouchard Lebrun:
“The butterfly is a flying flower, the flower a tethered butterfly.”
I was struck by the elegant counterpoint of two beings outside the scope of humanity, contrasting yet parallel images of beauty that invite me into a world where old comparisons fall away, where guilt does not apply, where I can “live and move and [be]”* on entirely new, entirely dignified terms.
Just now, however, I won’t elaborate on precisely what those terms might be. Rather, I will leave my fellow PWD to ponder whether they, too, have tethered butterfly moments and flying flower moments, and leave all of you to wonder whether I tend to be a flying flower on the dance floor or in the shower. The answers, if anyone ever dares wonder aloud, just might surprise us all.
*Acts 17:28, Douay-Rheims Bible