Sacred Images – A Meditation on Survivors’ Guilt

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

Cultural Violence and People with Disabilities

by Kari Pope

When I think about the George Hodgins case, the first thing that springs to mind is something I discovered in peace and conflict studies as, “cultural violence.” Why? Well, as I am someone who supposedly inhabits “the top of the disability food chain,” with few overt accessibility needs and few obvious signs of the physical disability I do have, there seem to be significant parts of a collective disability experience that I don’t share, such as the level of physical assistance with activities of daily living that would necessitate continued, regular, intimate contact with a caregiver or personal attendant. Therefore, I feel the most I can say about the story of George Hodgins is that what happened to him only serves to reinforce, to devastating effect, the culture of violence that confronts people with disabilities on a daily basis and that has wreaked havoc on my mind ever since I learned that a term for it existed.

How, you might ask, can such a thing exist? After all, as Clint Eastwood infamously put it, “Nobody doesn’t want to help the handicapped.” But can that really be true when one considers that modern structures were purpose-built to exclude us? That accessibility measures, when added on at all, were added as an afterthought, in accordance with a law that is considered by many in the disability community, even 20 years on, to be “better than nothing” and by many outside it as too costly to implement?  That too many people, their potential either ignored or disregarded by the rest of society, remain trapped in poverty by a system in which the loss of benefits is a constant threat?

But I won’t try to tackle all the issues in a single post. In fact my intention in posting was to reflect on how the culture of violence I perceive pervades my own disability experience. Whilst reflecting I happened upon an article discussing  the importance and impact of “The Black Male Code” in the aftermath of the murder of Trayvon Martin. In it, the author details, among other things, the lengths to which a Black man must go, even today, so as not to appear threatening or dangerous in public.

That got me thinking. I mean, I’m white. I’m a woman. I’m disabled. And I’m in public all the time; I take public transportation everywhere I go. It dawned on me that I’ve seen, even before I knew what I was looking at, the Black Male Code in action: guys going to unnecessary, yet painful, even sometimes ridiculous lengths to make me feel it ease. Remembered compliments, smiles, even nods took on new meaning as I started to wonder, “What code governs my own interactions with disabled and non-disabled folks alike?” Experience and history have taught me that few things are as threatening to a person’s sense of self as disability. I asked myself, “How often have I stayed seated when I could have stood, paid the full fare on the train or bus, or worn trousers or long skirts instead of shorts or mini’s, all in the name of preserving one’s perceptions–and, I admit, my own feelings–of so-called ‘normalcy’? By the same token, how often have I ‘gimped it up,’ in order to assure my fellow cripples that, yes, I am one of you?”

The answer is, all the time. And every time, I have felt like I was a threat to, and like I was threatened by, each group.

For example, I’ve noticed that folks have a tendency to think it’s perfectly okay to ask personal questions. They don’t seem to understand–probably because they feel threatened–that when you ask about a person’s disability, you are asking about their body. End of story. Inquiring point-blank about my ability to stand for long periods of time is not a way to greet me. Asking the name of my “condition” is not the way to find out my name. Translation: If you want to greet me, just say hello. If you want to learn my name, try telling me yours. We’ll both feel a whole lot less threatened, I’m sure.

Being what is sometimes called a “walkie-talkie” among people with CP, I’ve learned that I’m threatening to other people with disabilities, and their families, for almost the opposite reason. Instead of being a threat through being different, I am a threat for being not different–and therefore not disabled–enough. And I get threatened, as I was during a Cerebral Palsy Family Forum at UCLA several years ago, because of that lack of difference, that lack, ironic though it may seem, of disability. Apparently I was too much for one mother, whom I encountered along with her son at this event in 2006. After watching me approach an information booth where they, too, were waiting, she turned to me after I had greeted her son and said, “Oh, you have cerebral palsy, too–barely.” Nothing more.

I wanted to answer, “Hey, look, lady; I didn’t get to choose. Most days, if it were up to me, I’d rather roll around like your son there with his tray full of Spider-man stickers. Which, by the way, in case you hadn’t noticed, I complimented him on. I hope that at some point you’ll teach him to appreciate that, because so far all I’m getting is that you’re teaching him to hate me for being ‘less disabled’ than he is.”

But I didn’t. Because as my own mom always says, “You can’t expect people to get it. You can’t expect people to know and understand.” Such discouragement from the home front I experience also as violence. It’s the constant threat of no protection, no empathy, no opportunity to express myself or to be heard from the tenuous place I occupy in public, on the “disability food chain,” and everywhere.

And so I find myself, until now, locked into a code of silence. Alone with the threats I face every day, I see them as the seeds of a culture of violence that, if left to grow unabated, will ensure that the murder and abuse of people with disabilities, both like and unlike George Hodgins, will continue. And if we, in turn, continue stratifying our disability experiences rather than pooling them for the greater hope and wisdom of a community that strives to not only recognize but also create a shared disability experience, the infighting that keeps us at each other’s proverbial throats will destroy us from within, while hatred, abuse, and death continue to wrack us from without.