The New Yorker Profile:  Becky/Rebecca

 

Many scenes have come and gone unwritten, since it is today 4th September.  A cold grey blowy day, made memorable by the sight of a kingfisher and by my sense, waking early, of being again visited by ‘the spirit of delight’. “Rarely, rarely, comest thou, spirit of delight” That was I singing this time last year; and sang so poignantly that I have never forgotten it or my vision of a fin rising on wide blank sea.  No biographer could possibly guess this important fact about my life in the late summer of 1926.  Yet biographers pretend they know people. [Virginia Woolf, Diary, quoted by Quentin Bell]

      They don’t, or at least they ought not to.  All that they can claim is that they know a little more than does the public at large, and that, by catching at a few indications given here and there in recollections or writing, they can correct some misconceptions and trace, if they are very skillful or very lucky, an outline that is consistent and convincing, but which, like all outlines, is but tenuously connected with the actual form of the sitter in all lights, poses, moods, and disguises.

      To know the psyche of Virginia Woolf, and this is what she is in effect asking of a biographer, one would have to be either or God or Virginia, preferably God.  Looking from outside, one can go no further than what I have called the outline and for the rest one may guess, one may even build upon one’s divinations, but never for a moment allowing oneself to forget that this is guesswork and guesswork of a most hazardous kind.                                      [Quentin Bell, Virginia Woolf, A Biography]

 

Throughout my writing of this—what?—teacher’s memoir? homage to TNY? postmodern study in writing forms combined with stories about my students and showcasing of their writings? —the old saw, “Do as I say, not as I do,” has nipped at my heels.  I’ve already expressed earlier in this book my worry that, what with my emphatic teaching toward the power of narrative and scene over exposition, I might, in my own chronicle, have leaned too heavily on the expository line, telling and telling, droning on.  Also, in my use of The New Yorker as model, text, and schoolmaster for my students, shouldn’t it also serve as template for my own writing? I’ve been content, and in fact proud, to use student essays to teach for me by way of their respectable illustrations of the sort of literary quality they’re encountering in The New Yorker.  Squint my eyes and I can see many of these student pieces there—between the covers of the venerable magazine.

Mainly the student essays I’ve used have been, because of constraints of space, New Yorker short forms—Talk of the Town wannabe’s primarily.  But I also could have allowed student examples to illustrate New Yorker long forms—the immersion vitality and deep informational underbelly requisite for the recurrent Reporter at Large, Letter from…, Annals of…, and the distinctive New Yorker Profile.

What little I’ve done with long form illustrations has been circumscribed more by issues of space, reader attention span, and book publishing constraints than by any lag in my enthusiasm for student examples of long forms.  I have slipped in a few. Anna Robinson’s “Picture of Cannon,” was submitted to me under the rubric of Profile, and Julia Moris’s “Coney Island Rhapsody,” came to me as Annals of Place.  --A few others, but there are dozens, if not hundreds more I’d have been so proud to have used.

But now I think it’s high time that I challenge myself to attempt what my students have no choice but to write (if they remain in my classes). All term, every term, I prompt and prime my students toward their final project—a research essay (not to be confused with the dread academic research paper, but having at least as much rigor).  One such extended research form they might choose is the Profile a la TNY, a form that so far surpasses so-called journalistic profiles that it bears little resemblance to their sketchiness.  It’s People Magazine’s profile to the tenth power, and then some.

David Remnick, in the introduction to his New Yorker Profiles collection, Life Studies (2000), further pegs the distinctive features of The New Yorker Profile as having “something sidelong and ironical, a form that priz[es] intimacy and wit over biographical completeness or, God forbid, unabashed hero worship.”

Knowing this, and more, about common denominators of The New Yorker Profile, I realize even before I begin that I will break with some of the conventions.  I admit at the outset, for example, that I very well might slip into hero worship in Becky’s profile.  I confess that Becky is one of my heroes.  Also, my Profile of her will likely be longer than current New Yorker Profiles.  This is partly because I will make use of extended quotations, justifying my practice of doing this by claiming that I want to honor Becky’s own words, rather than cutting away from her writings (and the writings of others) to offer interpretation.  Interpretation strikes me as once or twice removed from the source. I want to let Becky speak, first hand instead.

Even leaning on her, it is with some trepidation that I try my hand at a Profile of my once and forever student, Becky Keeley.

 

Becky/Rebecca

 

I first met Becky when she backed into my class a little bit late; it was not till later that came to know Rebecca, as well.  I need to explain.

My class that term was to be held in an almost attic of a room on the fourth floor of the Ray B. West building, a building where English students and teachers hang out, a building not then up to disabled access standards (or, Becky would say, existing sub-standards).  To be honest, I’m ashamed to admit that initially I did not even know how Becky got herself and her motorized wheelchair up to that hard-to-reach room where I’d just carried twenty-five New Yorker issues, along with my ridiculously unrealistic boxful of books and supplementary materials.

 Becky offered a quiet apology for being late; I nodded and smiled to acknowledge her courteous explanation for tardiness, then I continued, for some reason, holding forth about “proxemics,” the study of cultural comfort levels for proximity as a signifier in communications. What I probably meant, though, more accurately, was “body language” which more generally serves as a level or nuance of communicating.  Who knows why I was talking about this—probably related to something our class would be encountering in The New Yorker, that “odd” text I was introducing.  I remember using an example I thought quite good. “Imagine entering a crowded elevator,” I suggested, “and instead of facing outward, along with everyone else on the elevator, you faced the lot of them.  Wouldn’t that feel odd and uncomfortable to you and to everyone facing you?” I asked, thoughtlessly.  Becky, at this point, with her characteristic forthrightness said, “That’s what I always do.”

So this was the first of her wake-up calls to jolt me—to jolt us all from habituated thinking and blithe assumptions.  Becky’s response papers, as they began coming in to me, challenged things in The New Yorker too.  One response essay I remember especially well. In it Becky takes to task the assumptions that most ads make—of a sort of mythical readership norm. No—more than that.  This was among the first of many of Becky’s writings in subsequent years to make me begin to be aware of how little most of us project into or empathize in the least with the worlds of disability. The second New Yorker issue that my 1994 class received, happened to be a theme issue on film—the cinema world with its glitz and glamour.  Looking at Becky’s annotations of her readings in the magazine helps me to realize, now, how much of culture shock my use of the magazine presented to most of my students.  Take Becky’s brief comment on Harold Brodkey’s “Variations on Sex,” for example:  “Many stars exude their own personal sexiness, but when they start aging, there goes their demand on the silver screen.”  Or her note on John Lahr’s “The VooDoo of Glamour”:  “The glamour of stars seems to hold us spellbound, even as their definition of glamour evolves.  What does glamour mean to them and to us?”  What does it, indeed, if you’re in a wheel chair and you can’t fit the images of glamour that film presents?  I take myself back to this March 21^st, 1994 issue, and I try my best to put myself in Becky’s shoes, as I read again, but newly, these lines from Lahr’s piece:  “Glamour saturates our landscape, leaving us to struggle against the omnipresent tug of the ideal.  We encounter glamour in advertisements, on billboards, in magazines, and occasionally even in the flesh, but for most of us glamour’s first and strongest reality has always been on film.”

In fact, it is this issue of glamour that Becky takes to task in her second response essay for the term.  The paper I remember and have kept from that first exposure to Becky’s otherwise view also gave me a touch of her often sardonic humor, as she ridiculed a couple of ads.   Bemused by my choice of “text,” Becky challenges, obliquely, the appropriateness of using The New Yorker in an academic setting.  It’s not unusual to get knee-jerk reactions against the ads, but Becky’s half amused and self-mocking, half disgusted recoil over the ads had a separate reason from most I encountered, which were mainly expressions of dismay over costs of luxury items; Becky’s objection, though, related to exclusion, not only of the great unwashed middle class and the poor, who “are always with us,” but also exclusion of people who are disabled (for want of a better word) from the posh and insular world of advertising. After her brief annotations of her considerable and seemingly tolerant and unruffled readings in the issue, Becky gives vent to some of her pent up feelings:

 

“How’s your classes?” my friend, Bonnie, asks between munches of her warmed-up pizza.

“Okay,” I answer, “I have one class without a textbook.  We read The New Yorker magazine.”  I should have said, “study” instead.  Her curiosity is piqued.  Bonnie wants to know what this hallowed magazine has to offer to those of us trying to elevate ourselves to higher knowledge, and perhaps—just maybe—to those seeking the skills to allow us to get a job that will provide more money and satisfaction than flipping burgers at the local grease joint. 

“Well,” I begin my attempted explanation, “our professor tells us TNY is a high class literary magazine about people and our world.  And I must admit, what I’ve seen is several stories above, say, Good Housekeeping.”  I go on to expound on what little experience I’ve had with TNY in the two weeks it has been thrust into my hands. 

However, a sour taste clings to my mouth.  I am wading through the many pages of the March 21st, 1994, Oscar edition.  I am searching for flesh and blood people, but it seems that most are solid gold, touched by the Midas finger of Hollywood…

Ah ha!  I find the consummate idol for this issue on page 64.  Here is an advertisement that fills two-thirds of the page—a bronze sculpture of a sun worshiper, complete with her orange (I hate orange) bikini, lounging on a deck chair.  She wears sunglasses, and a glass and pitcher (coordinated to match her blue striped beach towel) rest beside one of her hands, hanging limp on the arm of the chair, and on her outstretched bronze leg, a magazine lies open.  (No, it is not The New Yorker, or surely she’d be alert and intent on reading it.)  Did I mention that this sculpture is advertised as being life size?   What would you DO with such a sculpture, I wonder?—prop it up beside a pool you don’t have; place it in the middle of an immaculate garden on one’s estate?….  However, I have no knowledge of such grandiose possessions.  In fact, I don’t own a beach towel or lounge, unless you could count my wheel chair as a sort of a lounge.

 

Becky goes on in this sardonic vein, and concludes that if, by some magic, she could be that perfect sun worshipper, the swimsuit she wore would NOT be orange. So in this seemingly flippant little response paper, Becky voices the recoil that most of the students in my class must feel, so far removed are they from the world of wealth and glamour.  But she also suggests the recoil that disabled readers and viewers likely feel, since they are additional steps removed from the unrealistic ideals we’re asked to swallow.  Becky has provided me with, over the years and in many ways, the realization that our failure to empathize with disability is, at least, two-fold:  We not only fail to imagine specific ways someone with a disability must struggle with things we take for granted, but we also fail to see ways in which disabled individuals feel as we feel. Most accounts of disabled lives, writer Nancy Mairs notes, “fail to reflect the ways in which [disabled] life is indistinguishable from any other sort: fueled by the same appetites, fraught with the same anxieties, replete with the same delights.”

Mairs, in her Waist High in the World, does such a fine job of requiring us to think of varieties of disabled individuals, not classes or types of “the disabled.” She also contemplates the possibility that she might have written, as some had advised her to do, without revealing the fact that she has MS.  Mairs is an excellent writer—brilliant and scholarly and entertaining as well—a rare combination.  It’s true, she does not need to turn to autopathography, as she calls it, to make her way as a writer.  But she observes that her “work has always been deliberately and deeply grounded in [her] own experience,” and, she continues, “that experience is all I reliably have that no other writer can give.  There are readers—not a lot of them, perhaps, but even one is enough—who need, for a tangle of reasons, to be told that a life commonly held to be insufferable can be full and funny.  I’m living the life,” she informs us, “I can tell them.”  

Could I write about Becky without mentioning her cerebral palsy?  Becky, too, “is a fine writer—brilliant and scholarly and entertaining” and I certainly have come to regard Becky for her incisive and original insights, her warm and loving ways, her wry sense of humor, her compassion—qualities that I believe would make up her essence without connection to her cerebral palsy, but qualities that are undoubtedly informed, honed, and intensified by her disability. In my writing about Becky, I could try not to disclose her physical challenges, and so, in her own candid writings, could she, but a centrality of her would then be missing, and ever so much would need explaining. When have we EVER seen an ad using a real disabled subject?  And how often in the cinema world do we see real people with real disabilities playing roles?  In her book, Carnal Acts, Mairs—always sharp, vigilant, and outspoken—ponders the same advertising world question:

 

For months now I’ve been consciously searching for representations of myself in the media, especially television.  I know I’d recognize this self because of certain distinctive, though not unique, features:  I am a forty-three-year-old woman crippled by multiple sclerosis; although I can still totter short distances with the aid of a brace and a cane, more and more of the time I ride in a wheelchair.  Because of these appliances and my peculiar gait, I’m easy to spot even in a crowd.  So when I tell you I haven’t noticed any woman like me on television, you can believe me.

…I once asked a local advertiser why he didn’t include disabled people in his spots.  His response seemed direct enough: ‘We don’t want to give people the idea that our product is just for the handicapped.’  But tell me truly now:  If you saw me pouring out puppy biscuits, would you think these kibbles were only for the puppies of cripples?  If you saw my blind niece ordering a Coke, would you switch to Pepsi lest you be struck sightless?  No, I think the advertiser’s excuse masked a deeper and more anxious rationale:  To depict disabled people in the ordinary activities of daily life is to admit that there is something ordinary about disability itself, that it may enter anybody’s life.  If it is effaced completely, or at least isolated as a separate ‘problem,’ so that it remains at a safe distance from other human issues, then the viewer won’t feel threatened by her or his own physical vulnerability.

 

Why should all of this matter?  Mairs suggests some of the reasons why: 

 

This kind of effacement or isolation has painful, even dangerous consequences, however.  For the disabled person, these include self-degradation and a subtle kind of self-alienation not unlike that experienced by other minorities. …Imagine a life in which feasible others—others you can hope to be like—don’t exist….Everyone else is ‘there’ sucking breath mints and splashing on cologne and swigging wine coolers.  You’re ‘not there.’ And if not there, nowhere.

 

Then Mairs goes on to suggest another idea—one that Becky has already made me think about.  This last summer, I taught workshop sessions for a group of “senior citizens” who come to my little university town each summer to flee the heat of their Arizona retirement communities and, moreover, to edify themselves by taking university workshop sessions, such as the ones I taught.  I had selected, as our subject of study, some of the works of Eudora Welty, primarily her One Writer’s Beginnings, which I hoped to use as inspiration and springboard to their own writing.  I had invited Becky to speak to the class at the end of our two-week session.  She had earlier taken a university literature class I’d taught, for which Welty’s One Writer’s Beginnings had been one of the texts.  Becky cast the paper she presented to the summer citizen class as a letter to me and to them.  She talked about some of Welty’s choices—choices that some would view as limitations and barriers—“disabilities” of a sort; Becky also talked of her own disability that might be viewed as dis-abling and in-valid entirely.  Not so, said Becky—her words, like Welty’s words, were free: 

 

For some reason, if a person doesn’t possess a so-called and arbitrarily defined “ideal” body, people presume that my mind doesn’t work either.  The written word can stand apart from the body and can escape physical limitations.  However, like Welty, who never erased the fact that she was from the South, I don’t necessarily want to leave behind my experiences connected with a disabled body.  In fact, I believe this voice needs to be heard, because disability is inherent to life.  Those who do not live with a disability at some point of their lives are in the minority, rather than in the majority.  I am willing to bet that all of you in this workshop know the feeling of having your body betray you in some respect, if I may use that word.  But even physical betrayal can be explored and redeemed by words. Welty writes of her mother’s teaching her not to be afraid of growing old and having the mortal body give way to time: “She was teaching me one more, almost her last, lesson: emotions do not grow old.  I knew that I would feel as she did, and I do.”

 

Mairs comes to a similar observation:

 

But this denial of disability imperils even you who are [now] able-bodied, and not just by shrinking your insight into the physically and emotionally complex world you live in.  Some disabled people call you TAPs, or Temporarily Abled Persons.  The fact is that ours is the only minority you can join involuntarily, without warning, at any time.  And if you live long enough, as you’re increasingly likely to do, you may well join it. The transition will probably be difficult from a physical point of view no matter what.  But it will be a good bit easier psychologically if you are accustomed to seeing disability as a normal characteristic, one that complicates but does not ruin human existence.  Achieving this integration, for disabled and able-bodied people alike, requires that we insert disability daily into our field of vision:  quietly, naturally, in the small and common scenes of our ordinary lives.

 

Some who are disabled do not work through issues so pragmatically and philosophically as Mairs does. Some are downright angry.  Andre Dubus, the writer who lost one leg and the use of his other leg in a highway accident when he was trying to help a stranded motorist, also questions (in his essay collection, Meditations from a Movable Chair), grappling with the false and token nature manifest in the few efforts to acknowledge that our world is not made up of perfect bodies and minds.  Dubus often felt rage and he didn’t mind voicing that rage.  (He died far too young, not many years ago, and I marvelled that The New Yorker, which often printed his stories, did not honor Dubus with a Profile, or at least a Postscript.) Having read a feel-good newspaper profile about a quadriplegic who recovered use of his hands and was being given hope that he could walk again, Dubus asked himself,

 

Why, as I ate cereal and read this story, did I feel rage instead of gratitude?  I wanted to yell at someone…but who?  The reporter and his editor? That newspaper favorably reviews restaurants the quadriplegic cannot go into… The newspaper would not review a restaurant that was accessible only to Caucasians or only to men.

 

Then Dubus addressed the very question I pose and the one implicit in Becky’s response. Where, in video land and cinema world is a true portrayal of disability?

 

A few years after my crippling, I bought a video of The Men, and watched Marlon Brando playing a paraplegic.  At his wedding, he stood from his chair, holding on to the pew beside him.  Alone on my couch, watching him stand, sweating, on paralyzed legs, I laughed aloud at this dangerous mockery of those of us who cannot; whose spirits are willing, whose flesh will not.

 

Dubus then asks us to consider some hard details:

 

The quadriplegic’s arms and hands cannot push a wheelchair; his confinement and his mobility will be a chair with a motor.  They weigh two hundred and fifty pounds.  Who will carry him up even one step?  And why would he want to be carried?  When you are carried, your helplessness and the very meatness of you slap at your soul.

 

And, starkest of all, Dubus requires of us that we visualize the unspoken:

 

The quadriplegic will be forever dependent on someone.  He cannot sit on a toilet, he cannot wipe himself, or shave, shower, make his bed, dress.  He will use a catheter.  He cannot cook.  He will not feel the heat of a woman, except with his face.

 

Once Becky confided that her friend Jane had told her, sardonically, “Hey—don’t you think for a minute that we are excluded from the world of sex.  Lots of people like to have kinky sex with cripples.”  Such raw sarcasm might seem foreign to Becky’s saintly demeanor. But what gives us the right to mandate angelic roles for disabled individuals?  Even in their portrayal on the screen, we might find it a healthy thing to see characters not always portrayed as passionless. David Denby, writing about the film “The Shipping News,” tires of Hollywood “sad sacks” and of the celluloid “maudlin.”  Denby recalls, longingly, that it can be played otherwise, as in Daniel Day-Lewis’s portrayal of the Irish artist, Christy Brown, who suffered from cerebral palsy.  As Denby puts it, Christy so portrayed “was neither weak not good; he was brimming with anger and sexual desire.”  Why should that be a surprise? Over the years, Becky has been willing to show me something of her normal anger and desire.    It was not until we had come to know each other very well that she revealed to me that there is “Brave Becky,” but there is also the “Rebecca” side of her—the person who asks why she cannot know love and romance and independent ways—the one who feels anger over the ignorance and prejudice which throw unnecessary impediments in her path and in the way of countless other people with disabilities.  It’s that Rebecca who tells me how after she graduated in English, cum laude, when she went to the employment bureau, the very woman whose business and training it was to match skills of disabled applicants with jobs, suggested to Becky that she could be a greeter at Wal-Mart.  And it’s Rebecca who recently spunked-up (in a letter to the editor in the local newspaper) to Logan’s mayor, who managed to royally offend many in the disabled community. Becky has been vigilant and activist in her efforts to improve disabled access in public places in our sometimes clueless town.  Jane, the friend of Becky’s who has severe, spastic CP, having invited the mayor to accompany a group of disabled advocates as they ranged the town, later confided to Becky, who had not been with them, that the mayor, for image sake, reluctantly agreed to come along. And for image sake, too, asked if he might traverse the designated spots in a wheelchair, as if that publicity stunt would give him true insight into the inhibiting, relentless, confining necessity for a wheelchair.  That presumption was bad enough but not so offensive as the insensitive comment the mayor made when asked how he was enjoying the ride. “Hey, this is fun; it’s better than walking,” he said blithely.  To that flippant comment, Becky and her friend wrote in their letter to the editor:  “We can appreciate the sentiment of this statement.  However, some of us do not have the privilege of that option.  We use our wheelchairs and other assistive devices day-in-and day-out to improve our mobility—not for joyriding or for show.  This statement and other mannerisms during the time the mayor spent with us appeared to us as very patronizing.” This letter, shown to the mayor before its publication, of course, did not sit well with him.  He demanded that it be toned down and, in effect, required an apology from its authors.  “Boy, oh boy!” Becky wrote me, confidentially, about the incident, “we weren’t following the nice, sweet, disabled woman script!” Nevertheless, Becky and Jane rewrote the letter and came in their wheelchairs (how else?) with apologies and a new version for the mayor to approve.  (That “approve” might be read as “censor.”)  The ironic thing is that the first letter, through no fault of its authors, was the one published in the newspaper, and the further irony is that both young women authors were hurt by their families’ reactions even more than they had been by the mayor’s huffiness.

Much earlier, Becky came forward in the local paper with similar directness and honesty, with a features essay that not many would dare to write publicly.  Bathroom topics aren’t usually aired in hometown newspapers, but Becky dares to defy conventions.  The title, added by an editor at The Herald Journal and prosaic as can be, but accurate, at least, reads, A Girl Ought To Be Able To Find a Restroom. Then Becky’s essay unfolds with her unstinting candor:

 

“Excuse me, could you tell me where I can find this room?” I asked a passerby as I showed her the scrap of paper on which I had scribbled down the room numbers of my new classes.  I was already ten minutes late for my literature interpretations class.  Beyond knowing the whereabouts of the Kent Concert Hall and the Morgan Theater, I wasn’t at all familiar with the Fine Arts building.

“Let me see—it’s down this hall,” said my new-found guide.  I followed, thinking to myself that I had already been down this hall at least twice in my search.  “It’s a dance studio; down these steps.”

“Could you go tell Dr. Smith that Becky Keeley is here, and that I can’t get down the stairs in my wheelchair?  The woman was cordial enough to deliver my message.

Looking at the few stairs separating me from my classroom, I thought to myself, “A dance studio.  Well I can see why they didn’t think they needed to make it wheelchair accessible.” 

Two guys from the class had followed the gracious guide up the stairs.  “We’re here to help you down.  How do we carry this thing?” the taller of the two asked as he bent to see how he could lift my motorized scooter.

“No, no,” I laughed, “it’s far too heavy.”

“Well, shall we carry you? “ the other fellow tentatively asked.

“I can walk if you hold on to my elbows like this,” and I proceeded to show them how to hold my arms to give me enough support so I could concentrate on moving my feet.

“Well, here you are,” Art Smith proclaimed as the three of us entered the room.  This wasn’t the first class I’d had from Professor Smith, and we were good friends, which made the situation less awkward than it might have been with a stranger.

“Well Becky, what are you doing taking a class in a dance studio?” Art Smith asked with a twinkle in his eye.

“You don’t exactly look like a dance instructor,” popped out of my mouth, followed by an eruption of my own laughter.

Behind the laughter, though, I considered how ironic such a question was for me.

When I was a little girl, a dancer was what I most wanted to be when I grew up.  In my eyes, a dancer was the epitome of grace, beauty, and poise—a person who had complete body control and awareness and who could make something exquisite out of motion and space.  I desperately wanted that kind of control, because I had, even then, to work so hard to do things, to have motion.  I hated it when my legs went into spasms after a long day in metal braces and heavy orthopedic boots.  I so wanted to swap those hateful boots for dainty pink satin ballet slippers.

I should explain that I was born with cerebral palsy.  My muscles do not receive the correct messages from my brain, which is why I have a trusty sidekick, my motorized scooter.  I do not consider myself “confined” to a wheelchair; it’s just a part of my life to help me tackle the world better. 

From time to time I fantasize what my life would be without CP.  I can see myself taking dance classes in a studio like the one I had to have help entering.

Frustration and anger usually rise whenever I ask myself questions like that though, so I pushed the questions from my mind that day.  I knew Art Smith, like so many other instructors and professors, would do his best to help me participate and explore my options in his class.  Yet after four years at USU, I also knew the campus still offered challenges in accessibility.

Looking back at my first day at USU, I remember how my stomach seesawed between the excitement of embarking on a new adventure, and the disquiet of leaving behind the familiar,  I scurried around trying to find my classes.  I hadn’t thought of scouting out accessible restrooms before that day, figuring that such things would simply exist and present themselves.  I didn’t really think about it further than that assumption until in the afternoon, when nature began to call.

I had to get some things from the Merrill library before my last class of the day.  Looking at the clock, I realized I had just enough time to find the women’s restroom  before class.  I looked in the women’s restroom on the main floor—no accessible stall.  Perhaps the accessible restroom was elsewhere, as is often the case.  “Where are the handicapped restrooms?” I asked the librarian.

“Oh, I’m sorry.  There isn’t one,” she answered, a bit embarrassedly.

“That’s OK.  Can you tell me where the nearest one is then?” I asked, trying to lessen her embarrassment.

“I believe there is one in the Eccles Conference Center.  It’s the building with all the glass windows.  Or there’s one in the Old Main.

“Thank you,” I said, even though I had no idea where the Eccles Conference Center was, and besides, I realized I had no time to look for it before my next class.  

In “Introduction to the English Major,” Dr. Smitten went through the class requirements and began to tell us of all the opportunities open to people who have an English degree. 

Yes, I want to be an English major! I wanted to scream.  Now please quit talking.  I have more “pressing” matters than to dwell on my successful career armed with an English degree from USU.  I thought about leaving, but first-day-of-school intimidation kept me miserably sitting there.

“Please help me make it,” I silently prayed, looking at the clock.

Finally, the second hand reached twenty after three.  I had made it through class.  I slammed my notebook into the basket on the front of my chair and rushed out.  I raced down the hall, frantically looking for the restroom.  I felt cursed—no restrooms in sight.  I sped out onto the elevator in the annex connecting the Family Life and the Ray B. West buildings.  When I reached the first floor, I gratefully spied a custodian.  “Can you tell me where the nearest restroom is?”

“Go in there,” he replied, point to the Family Life building, “and turn right.”

At last, a restroom, I thought as I banged open the door.

But the worst was yet to come.

No stall with handrails, and no time to figure out how to keep my balance without them as I sometimes do.

I couldn’t hold it any longer—it had been eight hours since I had used a toilet.  I felt the warm gush between my legs, glad now that I was the only person in the restroom.  I grabbed some paper towels and tried to clean myself up.  I hoped that with my sitting down it wouldn’t be obvious.

Coming out of the restroom, I knew that the only person I wanted was my mom.  I was supposed to meet my older brother and go home with him, but I just couldn’t bring myself to do that.  I knew he would probably understand, but I couldn’t face him right then.  I found a pay phone out in front of the building.

“Hello, Dad, I need to talk to Mom.”  Why couldn’t Mom have answered the phone?  “Mom, come and get me.  No, I can’t come home with Paul.  I couldn’t find a bathroom.”  My voice cracked as I struggled to keep it under control.

“We will be right there.  Give us twenty minutes.”  

I hung up the phone, wondering if I would feel better if I cried.  No such luck, though; my eyes burned, but no water came to wash everything away.

Even at home in the bathtub, I couldn’t wash away the shame. This is something that happens the first day of kindergarten, not college.  “Here I am 18, and I wet myself.”

For one crazy moment, blaming myself for the disaster, I thought about never going back. 

Then I began to wonder how many other freshmen had worried about finding a restroom they could use that first hectic day, and I began to recognize that it had not been my fault.  Nevertheless, I had a hard time accepting that this happened on my first day of college.  Soon after I had noted all acceptable restrooms on campus.  However, just because a restroom has a white and blue sign on the door doesn’t mean it’s wheelchair friendly.    

Although I appreciate the arm rails and the supposedly large stalls, backing out finds me taking up all the room between the stalls and the wash basins, leaving no room to turn around.

One time I had a friend hold open a restroom door for me, but she had another appointment and could not stay.

She asked me if I would be able to get out, or if I wanted her to wait.  I assured her I would be fine.  I sat back down in my motorized scooter and started to back out of the stall.  ‘I stopped counting the failed backwards attempts.  A little-used restroom in a building rarely used for classes held me captive.  “What if I have to stay here all night?  What if I die here? I thought as I backed into the wall for the umpteenth time.

Finally, I got the door propped open, but I couldn’t hold the door and back all the way out.  Fortunately, a person was passing by this obscure restroom and I volunteered her to hold the door.

After looking at my watch, I found I had spent half-an-hour in my yellow-tiled chamber of horrors.

I wish that architects and designers were required to test their accessibility designs by using different types of chairs and devices used by people with disabilities.  I would like to see them navigate some of the ramps they devise as well as navigating the restrooms that they declare “handicap accessible.”

This next year, I will graduate with an English degree from Utah State University.  I am eager top see what I can do with my degree, and see if Dr. Smitten was telling the truth, on my first unforgettable day at USU, with his promises of glowing prospects.

I suppose I could say, as the poet Robert Frost did, that I’ll “take the road less traveled by,” and as I go along in life, I’ll be sure to check out, in advance, the restrooms on that less traveled road.

 

I considered it important to present all of this paper of Becky’s, just as it appeared in our local newspaper.  Otherwise, most of us do not have the imagination to visualize the details of such human necessities and the difficulties that present themselves to disabled people at every turn. 

I also wanted to present all of Becky’s details, not only because few have the imagination to envision the details of difficulty in others’ lives, but also because, I am in a position to present the subtext and the subsequent.  One of the sad ironies is that when Becky graduated, her first job was with OPTIONS for Independence, an organization whose goal is to address these very details, Becky found that she spent most of her time measuring restroom stalls.  This was a job break that Dr. Smitten hadn’t mentioned or, I’ll wager, even envisioned.

By way of one of Becky’s letters to me, I know, too, of one of the things that   prompted Becky to come out of the [water] closet about her embarrassing experience had been a letter she had received from a “woman friend” of hers who, Becky wrote, “wants me to write how I deal with CP for a book she is writing.  I found out that she wants one to two pages, at most.  I’m a little mad—she obviously doesn’t want to know how it really is—she wants feel-good clichés.  But I told her I would do it before I realized how little she wanted.  I know right now, that with that sort of limit, she’ll get only Chicken Soup stuff.  But then that’s all she wanted in the first place.” Characteristically, though, Becky created her own honest venue, and told it as it is.

Becky is not only bold and outspoken, she is also a pretty young woman; her blonde hair curls softly around her face, and her beautiful blue eyes accentuate her attractive, china doll features and complexion.  She is slender, with curves in the right places and with right proportions. When she’s not in her motorized wheelchair, she uses a collapsible, portable wheelchair that fits in the back of a sporty little red Pontiac, for which she has a license to drive.  When she comes to visit me, she calls from the car on her cell phone. “I’m in your driveway,” she tells me, and I rush out to help get her chair out.  I’m learning the ropes, but wonder how she does it alone (which she does); it’s hard for me to do, even with her assistance.  Once we have the chair out and reassembled for use, Becky works her rigid feet and legs past the gas and brake pedals.  When her feet are pointed out the car door, she pulls herself stiffly up, twists to get her back toward the chair, and then falls heavily into it.  Summers, we get together often, having informal backyard seminars with mutually decided upon subjects of study at our picnic table.  But winters when we get together, we meet at a restaurant, and talk over lunch.  Once, I invited her into our house, since she reminded me she’d never been inside.  I felt terrible about how she had to do it, since our house is hardly accessible to anyone with a limiting physical disability. (I’ve recently learned, enviously, that new housing codes in at least two U.S. states are now requiring disability standards.) But Becky good-naturedly crawled up our back steps, delighting our two dachshunds, Basil and Woolf, by coming down to their level.

Because I want to be sensitive in every way I can to what Becky struggles with, I’m trying, as best I can, to learn what is now known about cerebral palsy.  I had assumed, according to once conventional wisdom about CP that the disorder always could be traced to an error in birth and delivery.  I’ve learned recently that birth trauma or even malpractice can no longer be named as the sole cause. Head injury, jaundice, Rh incompatibility, and rubella (German measles) have also been noted as possible causes.  It is now known, too, that CP may be congenital or acquired after birth.  Yet the dated medical belief that the condition is solely resultant of birth complications, according to a pediatric doctor friend of mine, persists to the extent that any doctor who delivers a baby with cerebral palsy is almost automatically likely to be sued.

The notion of birth injury as causal was first suggested in the 1860’s by an English surgeon named William Little.  Little wrote the first medical descriptions of this affliction in children, suggesting that the condition could always be traced to oxygen shortage for the delivered baby, a shortage that would damage the infant’s brain tissues that control movement.  Early on, Sigmund Freud disagreed with Little’s postulate, and subsequent medical studies suggest that there is no single cause.

Nor is cerebral palsy, itself, a single chronic disorder, but rather an umbrella term that applies to a whole group of disabilities that manifest themselves in various symptoms, including difficulty with fine motor tasks, difficulty maintaining balance or walking, and in some types of CP, involuntary movements.  Cerebral palsy may cause profound disability or relatively mild, with all gradations in between. Of the identified types of CP, including spastic, athetoid, and ataxic, Becky has been diagnosed as having the spastic variety, meaning that her muscles are stiffly and permanently contracted.

And in terms of treatment, here too there is no such thing as one size fits all.  Each case must be analyzed and addressed individually.  In cases where there are seizures and muscle spasms, drugs can sometimes help, and special braces can sometimes compensate for muscle imbalance.  Much is done with physical therapy and speech therapy, both of which have been a large part of Becky’s growing up.

As for ongoing research, a good deal of the emphasis is on prevention, involving studies of fetal development, but research studies of improved treatment, including therapies, surgery, and drug assistance are also receiving attention.  In this last category, for example, experiments with minute amounts of the familiar toxin called botulinum, the toxin responsible for botulism poisoning, in which the body’s muscles become paralyzed, are injected in tiny amounts.  Some claim that this toxin has shown early promise in reducing spasticity in specific muscles. One mother of a CP infant, though, may voice other mothers’ unease with these new and sometimes extreme procedures.  This mother, Alison, who has made it her business to do concerted study about the CP that her infant son, Julius, must struggle with, writes, “Actually Matt and I are untrusting of all the surgical and pharmaceutical interventions that are presently accepted in medicine and readily available for Julius….Severing shortened tendons, lengthening tight muscles, injecting botox poisoning, implanting baclofen (muscle relaxant) pumps are all practiced procedures that seem to ignore the source of the problem, addressing only the physical symptoms of the injury, and not the brain injury itself….”

What if, one day, Becky could shed some of the problems that keep her dreams remote. Would she choose to take medical risks?  As it is now, Becky’s hard realities present stark contrast to what I am privileged to know of Becky’s dreams.  We so-called “normal” and abled folks not only fail to think through the nitty-gritty details in the lives of people who are (arbitrarily) defined as disabled; we also generally fail, completely, to imagine their dreams.  Becky’s writings for me and for other teachers and friends over the years reveal her recurrent dreams of being a dancer—whose extraordinary physicality makes for the polar opposite of physical disabilities.  Martha Graham once called her dancers “the athletes of God.” 

One of Becky’s very early response papers for me (in 1994, when she took that first Advanced Writing class from me and responded to a piece on the March 28^th issue of TNY on the White Oaks dance project, in which critic Arlene Croce considers dancers who are no longer young, by ballet’s stringent standards.  Baryshnikov, then forty-six, finds in modern dance a tolerance for age that ballet would not sanction.  He is able to surround himself with kids, and yet still command overarching awe.

 

Reading “Behind White Oaks” …brought back memories.  When I was a little kid, I was going t o grow up to be a dancer, not just any dancer, but a ballerina!  I told my mother that I had it made, because I already walked on my toes.  Because of my condition, Cerebral Palsy, my muscles were tight (They are still.), making it difficult to walk flat-footed.  In fact, I had to wear orthopedic boots with metal braces to keep my feet and legs how they ought to be.  I hated those braces; they were so heavy and ugly, I thought.  I dreamed of having pale pink, satin ballerina slippers.  My parents told me that being a dancer would take hours and hours of practice, but I was not deterred by that.  After all, didn’t I spend hours and hours doing my therapy and exercises, and hadn’t I endured three operations to correct some of the deformities of stringent muscles?  But of course my dreams would remain remote. 

However, that does not mean my dreams did not resurface at times. I don’t know how to explain it—I have always loved dance, even though I’ve of course never studied dance technique.  I suppose if I were to learn too much, that little girl in me will start asking, once more, for those dancing slippers—slippers that she will never have in this lifetime. 

I don’t know why I’m telling you this, Professor Cannon.  I guess I’m testing if writing is indeed therapeutic.  Sometimes when a certain melodic air fills the empty space, I can almost envision how I should be up on my feet, following the music into some enchanted realm.  I guess this dream is my own version of the happy ending fairy tale….

I normally don’t tell everyone about these strange glimpses.  Most people just don’t understand; when I venture to explain, they get this peculiar look of pity in their eyes, as if I’ve just lost my marbles.  I don’t want pity, and I’m not really lamenting loss of the dream. It was never really mine to lose. And besides, I find that self-pity is the most debilitating of handicaps…. I try to focus on living out what Emerson observed:  “What lies before us and what lies behind us are tiny matters compared to what lies within us.”…

These dancers at White Oaks capture the idea—they’re still dancing.  They may have to modify and go into new realms because of their limitations, the element is still there.  The mind knows no limitations except those we place there ourselves.  I still have that; I have always had that.  I might not get to those magical realms through dance, but I might find the door to an equally wonderful world through writing filled with perhaps more splendor and depth than in the world that is closed to me….  However, just as dancing well takes hours of practice and refinement, writing similarly takes such commitment.  So I take my course, “along the edges of dream and of real time.”

 

So Becky ends this response essay with a quotation from Croce’s review—a fitting expression, it turns out, of Becky’s own dual dance between dream and reality.  And bit by bit, I begin to understand the combination of dream, realism, and determination that Becky encompasses.  And, I began a friendship with this young woman that would open my thinking to new understandings and new dimensions of love. Her postscript offers me invitation:

 

P.S.  Professor Cannon, I don’t know why I get so personal.  I guess I’ve just hit a wellspring and I hope you don’t mind its gushing all over you.  In my book (if you’ll accept my metaphor) you are a kindred spirit, as Anne of Green Gables would say.  Please bear with me when I get too personal; somehow I think you will understand what I’m trying to convey.

 

On the reality side, only rarely does Becky stand, with the help of a walker, forearm metal crutches, or, if someone is strong enough, supported by that person’s arms.  On the dream side of the ledger, consider how one of Becky’s early papers, “Dare to Dream” begins—a paper that remains one of my favorites, both because of its text and because of the subtext that only she and I (until this writing) are privy to. 

 

Dare to Dream:  I Could Have Danced All Night

“Can I dance with you out of your chair?” Kirk asked me during a lull in the music.  He must have seen the incredulous expression on my face.  “Kristi told me that at the last church dance your cousin, Rita, had gotten you out of your wheelchair to dance.” 

I nodded. “You will have to help me,” I replied, hoping I sounded as if I danced every day.  All the while I was thinking, “Yes, but that was my cousin, not Kirk Schroeder—the most sought after guy in the junior class!”

“I won’t let you fall,” Kirk assured me, as he gently reached down and pulled me up away from my chair.  “You’ll have to tell me what to do.”

“Just put your arms around my waist, so I don’t lose my balance,” I responded as he steadied me, his arms going around my waist, as I’d instructed, but not fully imagined.  “This is not good for my hormones, but I like it,” I thought as I settled into his embrace.  I could tell he was a champion wrestler, because there was no way I was going to fall from his hold, as I had done when Rita and I were horsing around.

Other couples glided by, surprised to see me out of my wheelchair, and they flashed us their broadest smiles.  I couldn’t quite believe it myself.  It seemed as if, by some magical spell, I had shifted reality and found myself in a fairy tale.

Like most every other young girl, I grew up listening to fairy tales, and thrilled when the handsome prince fell in love with the beautiful heroine.  I dreamed of the day when I turned that magical sixteen years, and that handsome prince would come and take me to the junior prom or some other high school dance.  It never occurred to me that my wheelchair might get in the way.  After all, the handsome prince always saw through disguises and loved the heroine anyway.

I have never thought of my wheelchair as a disguise—just that I am more than a “body” in a chair.  I have Spastic Cerebral Palsy, which means that my muscles do not work properly.  Because of a fibrous umbilical cord, I am told, I did not receive enough oxygen, resulting in brain damage in the area that controls my muscles.

Unfortunate in this birth mishap, I am, though, fortunate in that my parents have, from the first, worked hard with me to help me reach potentials physically and psychologically that they had been told by the then medical establishment I could never reach.  I remember doing countless hours of physical therapy, for example.  And when I complained, my mother would say, “Becky, we just have to do your therapy.  You want your muscles to work, don’t you?”  I couldn’t argue with that, so I would lie down on the mat and do those dreaded exercises.  I soon learned that habitual self-pity was not one of my options.  I have always considered myself to be like everyone else, except that I move differently. 

That’s apparently not the way others see me, though.  When I entered high school, I decided I must let go of those fairy tales set in mythical time and place.  It was high time, I thought, to confront my reality—that I might not be asked out.  After all, I was not what you’d call the ideal cheerleader. 

Coming from a religious family, I was taught to pray about whatever problem happened to be bothering me, no matter how small.  However, my mother also taught me that prayer should be more than a wish list.  While I was growing up, Mom had a quote by C.S. Lewis tacked to the kitchen bulletin board:  “Prayer doesn’t necessarily change things for you; it changes you for things.”  Sometimes I didn’t like what that quotation inferred—I just wanted the problem to disappear at the snap of my fingers.  In my experience, my prayers of this nature had little effect. I didn’t necessarily pray for a date, because that would still place my happiness on something external.  Instead, I prayed to be genuinely happy and excited for my friends, as they began dating, rather than for something that likely would not be granted me.

Little by little, I shifted my fantasies from focusing on myself to visualizing my friends in prom dresses or going to football games with some dreamy hunk.  It’s not that I didn’t want to go on dates; I did.  In fact, I had a secret crush on Greg, Kirk’s older brother.  Sometimes during lunch hour, I would spy him—dark, wavy hair fallen over his eyes, his head bent over the book cradled in his arms.  It intrigued me that those very same arms could pin down almost any opponent.  Between him and Kirk, the Mountain Crest Mustangs didn’t know defeat on the wrestling mats.  Any foolish girl’s heart didn’t have a chance either—especially if she happened to dare to dream from a wheel chair.

Kirk did have many of my friends’ hearts a-flutter.  They would tell me how they secretly wished that Kirk would ask them out, and that by some miracle, he would fall in love with them.  I would sympathize with them, because I could see how a girl could fall for Kirk. With that ready smile of his, eyes that reminded me of melted milk chocolate, and thick, curly, black hair, I thought he was even better looking than Greg.  Though he played sports all the year round, he was no jock; instead he widened his circle of friends beyond some exclusive clique.  I knew Kirk better than Greg, because we were in the same year in school and had some classes together.  However, because of my own insecurities, I felt safer having a distance infatuation with Greg.  Kirk could have anyone he chose as his girlfriend.  Why would he pay attention to me?  I was his friend, of course; however, when it came to Kirk, I prided myself on having my realistic, face-the-facts outlook dominate the romantic dreamer in me.

By the beginning of my junior year, I focused on my friends’ dates more and more.  As a result, they often came to me when they needed someone to listen to the highs and lows of teenage angst.  Through this rather backdoor approach, I felt part of things and not so isolated.  But about two weeks before homecoming, I had a peculiar feeling that a surprise was in the air.  I brushed this notion off, thinking that if a surprise did come, that would be great; I do so like surprises.

A couple of days later, I wheeled into my extra-curricular religion class.  Everyone was excited about homecoming, so it took a couple of minutes before my teacher had the class’s attention.  Brother Bybee tried to maintain a sense of seriousness, but broke into a broad smile as he announced, “Before we start, I have a special guest in my office who has something for someone in our class.”

The whole class turned toward the door to see who our visitor might be.  The door opened slowly, and in limped Kirk on crutches, balancing a small vase with fresh cut roses form his mother’s garden.  Wrestling will always be his first love, I thought, as I noticed his blue and white cloth wrestling shoes, although wrestling wouldn’t be starting for two months.  Considering the fact that Kirk had only used crutches a week, I thought he was doing remarkably well, as he slowly made it up to the front of the class without spilling a single drop of water from the vase.  I knew how hard it is to walk with crutches while trying to carry something.

I looked around the room and saw the excited anticipation from most of the girls.  A hum started to fill the room, as students started whispering back and forth.  Kirk placed the vase on the small table as he laid one of his crutches against it and reached into his back pocket for a paper.  Picking up the vase, he turned around, showing his nervousness by shifting weight from one foot to the other.  “These roses are for someone here, and I have a very important question to ask her.”  Kirk’s eyes scanning the room, he continued, “I wrote this poem for her to ask her if she will accompany me to the homecoming dance.  Kirk then unfolded the paper and began to read his poem, his voice wavering a bit.

What a romantic way to ask a girl out, I thought.  As I listened to his poem, I tried to deduce which girl he would be asking.  It can’t be Kim, because he took her to the junior prom last year, and besides, Ed has already asked her. Kristi will be heartbroken.  She was hoping that Kirk would ask her, and she’s not been in this class.  I’ll bet it’s Jenny.  She’s a cheerleader and a good friend of Kirk’s. By this time, Kirk had gotten to the last stanza of his poem, and I couldn’t remember any of it.  I was just anxious to see if my deduction was correct.

“Now these roses are for this person, and I hope she will answer yes.” Then, looking straight at me Kirk limped toward me, placing the roses on my desk in the second row. 

“Me?!” I asked, in astonishment, looking up at Kirk as he nodded yes.

“Yes, for you—now don’t fall out of your chair!” Brother Bybee boomed from the back of the room, his voice sounding a bit more raspy than usual.

“Will you go with me to homecoming?” Kirk asked me directly, never breaking eye contact with me. 

I needed to know if this was some sort of warped joke.  Searching intently into his dark eyes, everything else faded from my awareness except Kirk and me and the fragrance of roses.  Without words, we exchanged the gift of trust.

Everything was waiting for me to say something, so I blurted out the first words I could grab: “Do I have to answer now?”

With that question as my reply, Kirk grinned and laughed a little. “No, but sometime before the dance!”  With that, he turned and went to get his other crutch, then he made his way to the door.

As Brother Bybee came forward, I noticed that he had tears in his eyes, suggesting reason for his raspy voice. “Okay class, let’s get on with the lesson.”

But his instruction had little effect, as my classmates expressed their excitement. “How are you going to answer him?” someone called from the corner of the room.  I just shook my head, because I was still trying to take it all in.  Finally, taking my gaze from the soft rainbow of the roses, I looked around the room.  I noticed many of my classmates had tears in their eyes. I turned to Jenny across the aisle, wearing her bright orange and navy blue cheerleading outfit.  Tears were streaming down her cheeks, but they didn’t wash away her smile.  Noting the incongruity of her tears and outfit, I wondered why she wasn’t cheering.  This is happy!  Why are you crying? I asked silently.  I felt a little odd, because the last thing I wanted to do was cry.  I felt more like singing at the top of my lungs.

The fairy tale magic remained even after Kirk brought me home after the dance.  No pumpkins or mice appeared at the stroke of midnight, only the feeling of singing.  I understood perfectly what Eliza Dolittle, in the musical, My Fair Lady, must have felt.  The words to the song, “I Could Have Danced All Night,” filled my head, as I tried vainly to fall asleep.  I wished life were a Broadway musical, so that I could break out in song without looking as if I had fallen off my rocker.  Instead I offered a simple prayer, expressing my gratitude for such a beautiful surprise.

 

   This youthful, romantic essay has its place and merit in Becky’s writings, even though I think it’s an essay she would not write now.  Even at the time she wrote it, she was aware that a publication venue for it might be something of the Chicken Soup ilk—pabulum and treacle for the soul.  And, in fact, at the suggestion or urgings of someone, Becky did submit her essay to a Guideposts publication, “Angels,” where it was accepted and eventually, bowdlerized and watered down, published as a half-page summary of the original, and with the heart cut out of it. That wonderful opening dialogue—the creation of the scene at the homecoming dance, with Kirk’s strong arms holding Becky as they danced, slow dancing in the realization of her dream—is gone, the original title is gone, all of the unexpected details that take Becky’s story out of the generic realm are gone.  And all that is left is a vignette that fits the Guidepost editors’ notion of what constitutes “inspirational.”   

I think, with a naughty perversity, how appalled the Guidepost and Chicken Soup folks would be over the subtext to Becky’s essay, one that questions pat happy endings and Pollyanna resolutions and that, contrary-wise, considers inequities and disappointments that often dash the magic of dreams. I am responsible for part of that subtext and for unleashing Rebecca’s own alternative views to her romantic essay. 

As Becky was preparing her original essay with the hope of having it accepted for publication, she sent me versions and revisions.  At the end of what Becky had hoped might be the last of her revisions, I had ventured to pen a question that had been nagging at me:  “I have two hard questions, Becky,” I had written at the end of Becky’s revision.  “You may or may not want to shift the tone of this wonderful essay from glowing to dark. 

“First, why did Kirk make a show of the invitation?  For your pleasure, or for his own glory?  And why did the dance have to end, meaning why did he not take you out again?”

After I mailed this version with my questions, I did not hear back from Becky for a fair while, and I began to worry that I had overstepped my bounds.  Although Becky was long out of my class and though I had hoped that we now had a friendship that dismissed the hierarchy that places teacher somehow above student, and though Becky, herself had questioned the rosy premises of pabulum stories crafted to reinforce disabled stereotypes and feed “inspiration” to those who would like to believe that all’s right with the world of disability, those who want their consciences with stroked by implied assurance that nothing need be done—still I fretted.  I love Becky, and would not hurt her for anything.

For a week I wrung my hands over having written potentially hurtful commentary on Becky’s simply beautiful essay, then I wrote, begging her forgiveness.  In reply, Becky sent a letter that indicates a measure of her patience.  Like it or not, she is, in my book, something of a saint.  Her letter of December 1^st, 1997, reads, in part:

 

You have never betrayed me, but rather encouraged me to find my voice and speak of my experiences because they have just as much value as any.  I appreciate and respect when, in various of my essays, you have called me on writing happy clichés about having CP.  Sometimes I’m so used to being the saint on the stone cathedral for people to look up and gather inspiration from so they can be on their merry way, that I fall into a kind of pattern language to fit what I think it is they (the world at large) want to hear.

One of my mother’s teachings urges that we always smile and answer “fine” when people ask us how we’re doing.  If we do that, Mom suggests, often God will make it so (or we ourselves will.)  I guess sometimes I take that to an extreme and tell people what   they want to hear.  Sometimes I need to remember that truth needs to be spoken for my benefit, as well as for the ultimate benefit of others.  You wanted that truth in all of my essays, I believe.

It was so refreshing and meant so much to me when you realized that Rebecca had left some gaps in the essay about going with Kirk to the dance.  When I tried to voice my less glowing feelings and thoughts, I was told I shouldn’t be ungrateful (not in these precise words, of course, but meaning them.)  Even while I was dancing with Kirk, I wondered if there was ever going to be a man who I wouldn’t have to stop dancing with.  The theme song for the dance was “Right Here Waiting for You,” and I realize that it wasn’t Kirk’s theme; it was mine.  Will I always be on the waiting end and in the waiting place? 

In my essay I tried to be faithful in writing about that experience, touching honestly on many of the emotions I had felt in being asked out, and then how I had felt during the dance.  Becky handled things marvelously, while Rebecca was storing things to be sorted out later.  It was only afterward, when everyone was going on about how wonderful Kirk had been to take me out that I saw it kind of go to his head.  Then my less than sanguine feelings rose to the surface….

 

I turn to the conclusion of her letter—a conclusion that opens up my exposure to Becky’s philosophical stance, a matter of continuing revelation for me, as our friendship deepens and she reveals and articulates her views.

“Now, one more thing that really made me think,” Becky writes:

 

I believe all humans have a huge capacity to blunder when dealing with others.  Everyone lives in “another country,” our separate countries of individual selfness.  Why must mine be thought so different?  Anyone could find herself with new citizenship in the “country of disability;” even Superman is not alien nor exempt.  I think truly alien would be living this life without contact with disability or weakness of any kind.  Such a person would truly be living on another planet.  Why can’t others speak for me if they are sensitive and well attuned? 

 

But Becky does not need a spokesperson; she speaks so truly and powerfully for herself and for those who live in her “country of disability.”  I certainly do not presume to speak for her here; rather I hope to honor her words and thoughts and philosophies as I have collected them.  It must be clear to any reader that I have a treasure trove of Becky’s words that I can only begin to tap in this Profile.  And some of her words that she has made me privy to, I will not reveal, respecting the confidential assumption with which they were given to me.

           As I revisit and ponder all of these words from Becky, I presume to believe that I understand her philosophy about disability, and furthermore presume that I can begin to see how someone who is what we label disabled, forms philosophies and tries to cope not in an isolated way, but very much by way of the philosophies of those who work most closely with her or him. Those who live in “the country of disability,” perhaps even more than those who live far from it, formulate their life stances in symbiotic ways.  I see, for example, how Becky’s mother has influenced, not only Becky’s physical well being (by way of therapies, medical assistance, schooling, and physical surround), but she has also been pivotal in the formation of Becky’s philosophy of life.  Points of contrast, in literature and life, help me to consider varieties of philosophical stances, as I try to formulate my own philosophy about disability, and, I suppose you could say, about inexplicable affliction in human lives—the Jobean dilemma—the hard stuff about why bad things happen to good and innocent people.

          Before I wrestle with these issues, though, I have to say that even as much as I clearly love and respect Becky, her philosophic stance regarding her own disability and the disabilities of others is not precisely my evolving stance.  My views on this complex philosophical and theological question must necessarily reflect my own perplexity.  The closest to an expression of how I now feel I find in the words of a young woman I’ve not even met, and whose painful experience I don’t share, except by deepest sympathy.  She’s the Alison, whom I’ve already quoted—the young mother of Julius.  Julius, though her first child, was not her first experience with caring for a disabled child, since Alison essentially raised and now has adopted her kid sister Renee who has Down’s Syndrome.  During Alison’s pregnancy, she tried to do everything right, and by all tests and indications, her little boy would be born perfect.  In a Christmas letter to friends and family, after Julius’s birth, Alison tried to explain, in detail what happened—in this case almost certainly one of the so-called eight percent of cerebral palsy births that resulted from mistakes in the delivery of the infant.  Those details are wrenchingly disturbing and convincing, but it’s Alison’s concluding paragraph that I borrow to express my own current view:

 

…Needless to say, this past year with Julius has changed us in ways we would never have imagined.  Matt will have to speak for himself in this matter, but I, for one, have had all of my beliefs tested and re-tested.  Up until this year I had thought experiences came into people’s lives attached to lessons that needed to be learned.  I thought that our paths through life lead us toward reasons and explanations for suffering, perhaps even toward justifications.  Now I no longer believe this.  Nobody needs these kinds of lessons.  There is no justification for bad things that happen to children.  There is not outcome perfect enough to warrant these experiences, no wealth great enough, and no lesson worth enough.  The support and the love we have received from so many caring friends has played an important role in keeping us from becoming bitter….  It is true that we are better people because of the emotional and even physical places Julius takes us.  Our patience, our love and our endurance have grown as a result, but still this is not justification enough.  While none of us can change this event, I have learned that we are not powerless.  The human spirit (unlike our human bodies) has no boundaries.  Desire is not contained and love has no limits.

 

I do not know if Alison would change any of this concluding paragraph to her last year’s heartbroken Christmas message.  I do see, by way of her ten-page Christmas letter written in a year’s time that in a year’s time, her emphasis has changed from philosophic to pragmatic.  She is making every effort to inform herself about ways she might lessen Julius’s struggles.  Her anger is not gone, but it is sublimated, you might say, to study and to concerted routine and pretty much full-time highly informed work with Julius. Her letter begins:

 

A narrow wheelchair is parked against our kitchen wall.  The chrome frame is baked with a Prussian blue metallic paint.  We selected the color from swatches as if we were buying a new car.  The accessories for the chair include a head rest, chest belt, sun canopy and carry pouch….  Sometimes we use the wheelchair around the house, but Julius is still small enough to be carried short distances so the chair is not completely necessary just yet.  For now , we use the wheelchair mainly as a stepping-stone for Julius, getting him used to its feel, its support system, its restrictive upright positioning which fosters proper growth of his spine and hips.  When the weather was nice Renee would, occasionally, walk Julius in his chair up and down the street in front of the house.  She is completely tender with Julius.  Imagine gentle, Down’s-syndrome Renee scuffling her feet along while she ever-so-slowly pushes baby Julius, who loves to be outside; what a sight.  Overall, though, Julius does not like his wheelchair.  He actually does not like anything that straps him in or ties him down.  I believe his dislike for being constrained stems from his traumatic birth, followed by his entrapping experiences in the hospital.  Even though I try, with great enthusiasm, to entice Julius by referring to his wheelchair as his “go-go chair” and driving him around the kitchen island with a trucker’s sound effects, he still only tolerates the ride for a short period of time.  Most often, we pretend the chair isn’t even there.

 

This is a wise, loving, dedicated mother.  She is doing everything she possibly can to carve out a good life for her damaged child.  She is facing problems and anticipated difficulties as intelligently and confrontationally as anyone could.  Alison is no pushover; she sees through a lot of denial and evasion that the medical community delivers, as may be seen in the way her essay continues:

 

Before settling down to write this newsletter, I re-read my previous letters.  There is a faithful, naïve quality behind my early words.  Phrases such as “developmentally DELAYED” played a role in prolonging my innocence concerning the magnitude of Julius’s injury.  From the time just after Julius’s birth, doctors and therapists said Julius would be developmentally DELAYED.  I was okay with that.  A developmental DELAY is, after-all, workable.  What great matter would it be if Julius didn’t walk until he was six, or talk until he was four? At twenty years old, who would care that Julius was delayed at three:  I could live with a developmental DELAY.

Semantics.  I have come to dissect statements make by caregivers and scientists to better grip what everyone actually means, and I can now argue that the term “developmentally DELAYED” is more suited for the four year old who refuses to use the potty, than to Julius, our precious Jules, who is clearly and sadly developmentally IMPAIRED.”

 

Nancy Mairs also takes euphemistic semantics to task, especially in her much anthologized essay, “On Being a Cripple.”  Her opening paragraphs of that essay give clear indication of how she confronts the world of euphemism, rampant in the world of disability:

 

The other day I was thinking of writing an essay on being a cripple.  I was thinking hard in one of the stalls of the women’s room in my office building, as I was shoving my shirt into my jeans and tugging up my zipper.  Preoccupied, I flushed, picked up my book bag, took my cane down from the hook, and unlatched the door.  So many movements unbalanced me, and as I pulled the door open I fell over backward, landing fully clothed on the toilet seat with my legs splayed in front of me: the old beetle-on-its-back routine.  Saturday afternoon, the building was deserted, I was free to laugh aloud as I wriggled back to my feet, my voice bouncing off the yellowish tiles from all directions.  Had anyone been there with me, I’d have been still and faint and hot with chagrin.  I decided it was high time to write the essay.

First, the matter of semantics.  I am a cripple.  I choose this word to name me.  I choose from among several possibilities, the most common of which are “handicapped” and “disabled.”  I made the choice a number of years ago, without thinking, unaware of my motives for doing so.  Even now, I’m not sure what those motives are, but I recognize that they are complex and not entirely flattering.  People—crippled or not—wince at the word “cripple,” as they do not at “handicapped” or “disabled.”  Perhaps I want them to wince.  I want them to see me as a tough customer, one to whom the fates/gods/viruses have not been kind, but who can face the brutal truth of her existence squarely.  As a cripple, I swagger.

 

Mairs goes on to consider the etymology of the word, “cripple,” an “honest” etymology which strikes her as “straightforward and precise,” in its reference to the loss of use of one’s limbs.  “Disabled,” by contrast, Mairs notes could suggest any incapacity, physical or mental, and “handicapped,” she considers in its original meaning (coming from games, in which some are given a slight advantage to compensate for their disadvantage, giving the illusion of equal starts.)  And the recently coined euphemism, “differently abled,” Mairs dismisses as a foolish attempt to change the facts of one’s condition by changing what it is called, and she makes a comparison of the way “undeveloped” nations have been called, in an ascending scale of semantic wishful thinking:  “underdeveloped,” “less developed,” and “developing,” even while the people in the nation starve on, just the same, their condition not changed one iota by the name changes. 

And finally, after pages of honest consideration of semantics and the reality of what she lives with, Mairs philosophically concludes:

 

…if a cure were found, would I take it?  In a minute.  I may be a cripple, but I’m only occasionally a loony and never a saint.  Anyway, in my brand of theology God doesn’t give bonus points for a limp.  I’d take a cure; I just don’t need one.  A friend who also has MS startled me once by asking,  “Do you ever say to yourself, ‘Why me, Lord?’”  “No Michael, I don’t,” I told him, “because whenever I try, the only response I can think of is ‘Why not?’  If I could make a cosmic deal, who would I put in my place?  What in my life would I give up in exchange for sound limbs and a thrilling rush of energy?  No one.  Nothing.  I might as well do the job myself.  Now that I’m getting the hang of it.”

 

What I would ask Mairs at this point, though, is why does the “Why me?” question imply to her that the question carries a built-in trade-off.  I think that Becky and Nancy could ask that question without guilt and without assuming that their asking of it suggests that if not them, then there must someone else stricken.  My cosmic question would be “Why, in a just world, must there be anyone carrying the burden?” A three-year-old of my acquaintance composed a little song that she sang to herself for most of a day.  The words, in their entirety were, “Life is not fair, life is not fair, life is not fair….”

That’s a pretty cynical summing-up for a three-year-old to make, and probably a less faithful philosophy than Becky embraces.  And I realize that one temptation I will have to resist as I try to chart Becky’s philosophy of disability is that I might present Becky as more angry and rebellious in the face of her disability than she actually is.  I might align Becky with me, as I shake my fist at fate or God or the “shit luck” Raymond Carver sometimes railed against. I might tell her, for suasion sake, of a comment made by a father who just lost his child—a child who had been born perfect and lived six months of his life as a healthy, normally developing baby boy.  Then, inexplicably one night the baby’s brain hemorrhaged, causing profound disability for the few remaining miracle years of his life. At sometime during those years, the baby’s grandfather, meaning well and trying to comfort, offered the suggestion that “we can’t understand Heavenly Father’s motives.”

“If looks could kill,” said the child’s father, “my father would have been struck dead at that moment.  I remember thinking that my Heavenly Father could not have anything to do with this.  I don’t pretend to know answers.  But while I believe that Heavenly Father knows us and loves us individually, I still refuse to believe that He micromanages our lives to the extent that He would think, ‘Gee, I think Brenda and Eric need to learn some lessons and receive some blessings, so I think I’ll strike their innocent baby with a brain hemorrhage.’” 

        Even though I have reams of Becky’s writings that should keep me honest as I attempt to cast her beliefs with fairness, I could, nevertheless, present a composite picture, distorting her faith and acceptance to come out as the questioning that I struggle with myself. A biographer would feel rich as Croesus to have a trove of written testimony to search through in the writing of a life, yet I see that even possession of a subject’s credo, writ large, does not assure an accurate picture.  I count myself fortunate as I look over papers and letters that Becky has put in my trust, even while I confess the conscious or subconscious temptation to distort, to present us as seeing eye to eye.  (To be always “eye to eye,” I would need to be in a wheelchair too.) I realize that Becky has given me a way to chart her philosophy of disability and, in fact, her religious stance in an imperfect world, therefore in an attempt to honor her gift, I will quote her at length, lest I interpret and distort and conflate.

Probably the most dramatic example of what I’m trying to indicate came to me after I asked Becky to write her rebuttal (for I was certain it would be a refutation) of Michael Specter’s September 1999 New Yorker Profile of Peter Singer, “The Dangerous Philosopher.” Singer, then recently appointed to the position of Princeton University’s first professor of bioethics, didn’t take long in fomenting fierce protest against his unorthodox views on everything from animal rights to matters of human worth or worthlessness. (“Worthlessness” strikes me as a justifiable word choice here, since Singer, in his most inflammatory book, Practical Ethics, asserts that “Killing a defective infant is not morally equivalent to killing a person. Sometimes it is not wrong at all.”) I should explain that although Becky is long since out of my classes, I continue to pass along features from various published sources that I think will be of interest to her, and, since I’ve subscribed to The New Yorker for her, I even persist in giving her “assignments,” or at least recommendations along with posed questions for her to address.  I had, for example, suggested to Becky that she read a touching May, 1999 New Yorker essay (“Miracle Kid”) about Max, a severely disabled, disfigured, and malformed little boy, and his mother’s “extraordinary determination to convince herself and everyone around her that to give Max anything less than immediate and complete treatment would be immoral, even a crime.” Knowing that Becky had read this essay may help explain why she is able to begin her Response Paper on “The Dangerous Philosopher,” with an allusion to “Miracle Kid.” In order to “contextualize” (as they say) Becky’s reference to Max, “The Miracle Kid,” I need to tell a little bit about a compelling and touching essay by Lucinda Franks that also appeared in New Yorker.  Franks writes about her nephew, Max, who, according to some (Singer, by clear implication) would be a certain candidate for euthanasia. “The baby had a very rare genetic disorder called Fraser syndrome, which interrupts the development of a fetus’s organs and other body parts. The skin over the eyes often does not split to create eyelids, and the fingers and toes usually do not separate.”  Tiny Max manifested all of these extreme birth defects and then some--“…he had severe hearing loss, and it was assumed that his single, underdeveloped eye could not function…. Moreover, statistics show that the outlook for children afflicted with Fraser syndrome is grim.”  When Penelope, Max’s mother, asked about prognosis, one of the resident doctors whose specialization was to be genetics finally explained, “I can’t tell you.  We’ve only seen these babies in a bottle.” And one nurse, Franks tells us, “felt duty- bound to inform the shocked and grieving father that in some rural hospitals “such babies might be left to die.”--to which information Bernard gave the anguished reply, “This is my son!,” even though Bernard was wondering secretly if that son of his “should survive—blind, deaf, [and probably] mentally impaired.”

And certainly Max’s parents might have found encouragement and professional advice to end his life.  Resisting that urging explains a large part of Max’s miracle.  The other part comes from Max’s own remarkable will to survive and more than survive.  Operation after impossible operation, counseling sessions, and enveloping love from family brought Max to his sweet potential, his joy in life and the joy he brings to others serving as eloquent refutation of Singer’s bitter credo. According to Dr. Anne Galloway, a vision specialist who has worked with Max, “ he sees, hears, and even feels tactilely only half of what his intellectual equals do, [Max’s] brain fills in the gaps.”  Spotting Max, now a first grader, on the playground, Galloway observes that “The biggest difference [she] see[s] is his mind.  It has an unusual passion and persistence, and a conceptual beauty.”

In fact, Franks concludes that “Everyone who knows Penelope [Max’s mother] has noticed that she has become both steadier and more lighthearted than she was. ‘The truth is that Max has made me more deeply happy than I have ever been,’ [Penelope] explained. ‘He changes everyone who meets him.  He changes their ideas about beauty, about worth.  He has made every member of our family—immediate as well as extended—grow up and change their life view in some essential way.’”  And Dr. Flaum, responsible for uncovering Max’s one buried eye, and in effect for saving his infant life, offers eloquent refutation of Singer, though at the time, Flaum likely knew nothing of Singer’s argument:  “It’s easy to write people off, say, ‘This one’s so abnormal, forget it.’  Max has reaffirmed that you cannot look at a person and know for sure he has no ability to learn and be a good member of our society.”

As she begins her response to the Singer Profile, Becky also alludes to John Bayley’s touching essay on the deterioration of his wife, Iris Murdock’s powerful mind.  As Murdock was proceeding into her Alzheimer’s losses, Bayley, feeling his way in this new country too, remembered a comment made by a woman whose husband had Alzheimer’s, “Like being chained to a corpse, you know.”  But Bayley refused to acknowledge the woman’s observation as true—not then, not ever.  He never lost sight of the living and vital and beloved Iris.  And as if to affirm this truth without saying it outright, Bayley segues from the woman’s callous comment, to a scene years later and a time far advanced into Iris’s disease. He has driven with Iris to a long-ago trysting place and, implicitly answers the woman, though she’ll never know: 

 

I pulled off the road, stopped the car, and put my arms around her.  A few miles back, I had felt afraid to be alone with her for the first time since we’d met, nearly fifty years ago.  I had found myself with a madwoman, one quite alien and strange.  All that was gone now. She was just Iris—Iris as I had always known her, and loved her.

It was true that we were in darkness, but it was a darkness without fear or hope, a darkness in which we were now traveling together again as one.  And we could go on together somehow, from day to day, from tea to supper, and from supper to bedtime. 

 

Here is an acknowledgement of disability at both ends of the age spectrum, and here are caretakers grateful for their charges and loving them with all their hearts.  And Becky uses both as implicit refutation of Specter’s representation of Singer’s views:  “I received your letter asking for my response to “The Dangerous Philosopher” in the September 6^th issue of TNY.  Upon reading the essay, two other New Yorker essays filled my mind—essays that had touched me the most since the beginning of your gift subscription—“Miracle Kid,” in the May 17, 1999 issue, and “Last Jokes,” in the 1999 August 2^nd issue.  These two essays speak of courage and suffering endured, as well as of laughter and human love.  By stark contrast, Michael Specter’s feature on Peter Singer left me cold….  As I read I felt as if I were trying to swallow something vile in a candy coating.”

Using the examples of this “miracle child,” Max, who Singer would almost certainly have counted as a valueless life, and Iris Murdock, in her changed and mindless state, who Singer would have also have noted as valueless, and, in fact, in both cases burdensome to caretakers, Becky shows how both of these Singer discounted lives prove of immense individual import. She also refutes with her own experience and with experiences of disabled friends and family.  She even uses me, as I age and move from the arbitrary ideal norm.  She also takes the Profile’s author, Michael Specter to task for what she views as his sanguine almost rosy presentation of Singer’s views.  (To this point I had to ask Becky if she could be sure she was not killing the messenger. And the question that plagues me as I write, intensifies as I too wonder how “objective” I should or can be in trying to portray Becky.)  “I wonder what Specter’s opinion of Peter Singer really is,” Becky muses. She goes on to suggest that all the while she was reading “The Dangerous Philosopher,” she detected Specter’s unwillingness to really probe Singer’s thoughts.  Was the author afraid of Singer’s disapproval, Becky wonders, afraid that he, as profiler, would be found guilty of what seems to be Singer’s favorite accusation directed to his critics—that an idea has been “taken out of context?”  Becky freely admits that she came to this feature with her own understandably fierce biases.  She concedes that Specter needed to keep some objective distance, and perhaps that he was simply allowing Singer to create recoil, by his very outrageousness—hoist on his own petard. As with an autoimmune disease, Singer’s arguments may devour their own credibility.  Becky then gives plenty of what she regards as Singer’s shocking and damning quotes:  “The notion that human life is sacred just because it’s human life is medieval…it’s time to stop pretending that the world is not the way we know it to be.”

“My nephew,” Becky counters, “who has multiple and severe disabilities because his brain didn’t form completely, is not, as Singer would declare, ‘a more compassionate’ alternative to a healthy rabbit in the conducting of scientific experiments.  I’m sure that my sister, would agree with Max’s mother when she proclaimed, ‘This it is my son, not just a jumble of damaged parts.’” 

If the metaphor were not so violent, I’d say that Becky has a way of “going for the jugular.”  In paper after paper she’s written for me, and for other instructors, since first she entered that class a bit late, she’s demonstrated to me and to classmates that she can give her readers fresh perspectives.  “Yes,” Becky correctly observes, ‘Miracle Kid’ focuses on Max’s physical struggles and triumphs, however the physical battle hinges on the emotional battle regarding his worth as an individual child—a child with disabilities.  This battleground of the emotions and societal attitudes is in no way a simple one to maneuver.  From the very start, Max’s parents traverse many difficult routes.  While Max’s mother opts for every treatment available to Max, Singer likely would have advised her that ‘according to the total view’ of eliminating pain, killing a disabled child would be ‘right.’  “…I much prefer,” Becky affirms, “the wise counsel Max’s mother received from a nurse when Penelope was unsure about the world beyond the hospital.  ‘You know, before Max is able to defend himself, how you treat and feel about him is what others will feel too….  Let people know he’s here to stay, [that] he’s waiting to join the world.’”  Then, drawing on her personal experiences, Becky writes some things that I wish Singer would read—really read:  “I am touched by the author’s description of the young neighborhood children excitedly welcoming Max and helping in his progress. These children hadn’t yet learned the social attitudes of apprehension towards someone who is a little different.  Many times when I go places, little children want to approach me to ask questions about my wheelchair.  Their parents usually act embarrassed at this and try to shush the child, enforcing the belief that there is something shameful about having a disability.  I would much rather answer their questions; after all, ignorance is a terrible disability.”  Ignorance is a terrible disability—how could she have refuted Singer better, I wonder?

In analysis after analysis, Becky positions herself in the complex and diverse world of disability.  She considers how disabled characters are treated in literature, deconstructing every character from blind Mary in Laura Ingalls Wilder’s Little House on the Prairie books (Her paper cleverly titled, “Losing Sight of Mary:  Disability in the Little House), to Christy Brown in My Left Foot, and Christopher Nolan in his remarkable memoir, Under the Eye of the Clock. (These last two books are books I had lent her, asking, as is my wont, for her take on them, even though I’m not longer teaching, at least not in a classroom setting.) She even examines Dicken’s Tiny Tim, and then Clara, in Heidi.  She considers the heroine, Prudence, in Mary Webb’s sleeper classic, Precious Bane.  I had also given this book to Becky, as a rare example of a disabled heroine who gets her man.  How could anyone forget the end of that romance where Kester, the handsome hero, takes Pru in his arms and plants a kiss on her hare-shotten lips (as Shropshire folklore would name it)?

 

He stooped.  He set his arms about me.  He lifted me to the saddle.  It was just as in the dream I had…. “Tabor on, owd nag!” says Kester, and we were going at a canter towards the blue and purple mountains.

“But no!” I said.  “It mun be frommet, Kester.  You mun marry a girl like a lily.  See, I be hare-shotten!”

But he wouldna listen.  He wouldna argufy.  Only after I pleaded agen myelf a long while, he pulled up sharp, and looking down into my eyes, he said—

“No more sad talk!  I’ve chosen my bit of Paradise.  ‘Tis on your breast, my dear acquaintance!”

And when he’d said those words, he bent his comely head and kissed me full upon the mouth.

 

And in a contemporary criticism class that Becky took toward her Master’s degree, she analyzed Michael Foucault’s theory of “the medical gaze,” in terms of how doctors treat and view disabled patients.  At the formal presentation of this paper, Becky donned a pair of Dollar Store bug-eye, spring eyeball glasses.  Fellow students didn’t know whether to laugh or cry, as Becky read, eyes boinging out, her heavy-duty theoretical paper, compliant with the jargon, though she told me later how she hated that linguistic posturizing:  To give a sometimes turgid example, uncharacteristic of Becky’s forthright prose, here are a couple of passages from her paper, “Finding a Voice:  Theorizing Disability Studies: 

 

The human experience as affected by disability is beginning to come into its own as a legitimate discourse and a pertinent field of study in the academic world.  Study of the disability experience once was consigned only to the medical and social welfare services.  The recent cultural and academic field of disability studies has emerged to question this dismissal to the fringes of discourse and, in some cases a complete lack of an appropriate discourse.  Even within these fringes, people with disability could not ‘speak’ for themselves, but nondisabled professionals ‘voiced’ and defined their [disabled] experiences.

 

Then Becky quotes Kenny Fries, a contemporary disabled spokesman who asserts:   “Throughout history, those who live with disabilities have been defined by the gaze and the needs of the nondisabled world. Many times, those who live with disabilities have been isolated in institutions, experimented upon, exterminated.  We…have been silenced by those who did not want to hear what we had to say.”

Even thickets of deconstructionist jargon do not deter Becky’s forthrightness, though, as she takes medical authorities to task for failing to look beyond the disabilities to the individual.  Doctors and medical theorists do not even begin to address the human and social aspects of disability, Becky observes.  She turns to Michael Foucault and his theory of otherness—otherness being equal to powerlessness.  Becky helped me to consider the truth of what she notes—that “castigating illness and disease leads those in power to have more control over those who do not possess the esteemed virtues of the body.”

Becky has immersed herself in the discourse of disability studies and is formidably equipped to take on those who have traditionally held the power.  I smile to imagine doctors who have Becky as a patient. Her doctors will find soon enough that Becky will not be compliant to application of labels or old assumptions; she will not go along with easy comparisons of her body to the “norm” as prized over “defective.”  In fact Becky, I’ll wager will not accept the classification of her body as “defective”—a body to be “fixed,”a body labled “broken,” “damaged,” or “unnatural.”  A doctor with such attitudes will have Becky to reckon with and his medical gaze will be the thing most in need of fixing. Becky, as a patient, will not be patient with the old power structure scripts.  Yet neither does she buy in to the disability analogue to “Black is beautiful,” or “Gay Pride.”  As she goes on to say in her paper “Theorizing Disability Studies,”

 

Though people with disabilities use many of the elements which make up the civil rights discourse, the notion that such discourse fits everyone could create problems…. Would someone with a spinal cord injury resulting in quadriplegia want to ‘celebrate’ having to use a catheter to empty his or her bladder? 

 

Then Becky clarifies by illustration, telling of her bad bathroom experience on her first day of college.  She explains how in her newspaper feature she had wanted to write honestly about usually unspoken details of disability, rather than writing the “feel good,” inspirational, Olympian narratives that people like to hear: 

 

I wrote of not finding an accessible restroom in two buildings, and of wetting my pants.  I was so ashamed because this was something that might understandably happen on the first day of kindergarten, not the first day of college.”  But here’s the point, as she writes it:  “I should have the right to voice this experience, but I don’t want to ‘celebrate’ it.  I want to use my own voice to communicate my experience rather than just parrot back what I think the non-disabled audience want to hear.  I also don’t want to feel obliged to speak the script some disability activists expect me to say, according to their evolving party line narrative of disability discourse.

 

            Becky is her own woman and it’s that complex independence of thought that I celebrate here.

One summer, after I had read Stephen Mitchell’s eloquent and thoughtful translation of The Book of Job, I lent our copy of that book to Becky, along with the challenge that she write a response.  Becky put a huge amount of time and thought into her response, drawing on the literature of tribulation from Milton to C. S. Lewis; from Beethoven and Theodore Roethke to Mother Teresa.  Significantly, she turns to biblical (King James translation) lines that she thinks to be omitted from Mitchell’s poetic translation, revealing what is, at core, her sustaining faith: “For I know that my redeemer liveth, and that he shall stand at the latter day upon the earth:  And though after my skin worms destroy this body, yet in my flesh shall I see God.”  I feel profoundly disappointed that these verses were nowhere to be found in this translation by Mitchell, yet I feel this is not the forum to discuss the reasons,” Becky comments.  But in her brief aside, I believe, rests a centrality of Becky’s faith and her way of coping with her own trials.

Mitchell’s endnote about this passage explains the seemingly drastic departure from the King James words of faith in a personal savior as advocate and ultimate restorer of justice.  Mitchell states, “These famous verses are so filled with obscurities and corruptions that they are ‘impossible of textual solution on any theory’   I have had to omit them and improvise drastically.”  Mitchell’s translation of this passage does not, expressly, affirm the faith that there will be, in an eternal reckoning, an administration of healing justice and retribution. In her voluntary essay on Job, Becky tries to spell out her philosophy as directly as she can. 

 

Sometimes I wonder what I would be like if I didn’t have cerebral palsy…. Oh how I wish …that I would wake up one morning and the physical struggles and societal barriers wouldn’t be there….  I have a hunch that I wouldn’t be who I am, although I probably would have many of the same characteristics.  My mother has taught that all experiences have lessons that we, as individual children of God, need.  I wonder what has more value—living life without the physical challenges, or growing and learning to have faith, patience, and empathy for others.  The Apostle Peter’s counsel perfectly describes my attitude:  ‘Beloved, think not it strange concerning the fiery trial which is to try you, as though some strange thing happened unto you.’ (1 Peter 1:7)

 

Becky goes on to describe three childhood experiences when she felt abandoned and isolated and “different”—at least she felt that way until she turned to what is, in the last analysis, her sustaining faith in a personal Savior—a Savior who, by definition, brings consolation and leaves us never alone.  That faith, I have come to understand, is subtext to all of Becky’s writings.  Although she will question and even rail against insensitivity and unfairness she continually meets, she never rails against God the Savior.  She will question everything from public restroom inadequacies to gaps and stereotyping in literature, but she will never, I believe, question the Lord.  In a paper she wrote for another class from me, Becky demonstrates that her philosophy is not a Pollyanna wash, but neither is it without underlying faith.

 

Jill Ker Conway’s two books bring me to think about my experiences and the choices before me.  Here I am on the brink of graduate studies.  I freely admit that I am confused and feel as if I’m embarking on and uncharted sea, or to use a metaphor more appropriate to this essay, I’m a lost sheep searching for my shepherd and green pasture.

 

(In this essay, Becky has compared Conway’s growing-up days and her family’s sheep herding on the western plains of New South Wales, Australia, with Becky’s mother’s childhood as the daughter of a sheep herder in the Big Horn Basin in northern Wyoming.)

 

In periods between my periods of formal schooling, I worked with people with disabilities.  I liked to see how I might make a difference in people’s lives.  I wanted to do more than just measure toilets to see if they were within the requirements of The Americans with Disabilities Act (ADA).  I also wanted my own “voice” back.  Just because people may have similar disabilities doesn’t necessarily mean that they will have the same views.  While at my job, I was introduced to a lot of material about people with disabilities, much of it technical and scholarly.  Thinking back on my English background, I wondered why there are so few true voices of this particular human experience in literature.  After all, in 1997 there were 499 million Americans with disabilities, and everyone who ever lives might, at some point in life, find himself or herself part of this silent minority…. How do the abundant stereotypes foster this silence and negate individual disabled experience? Why must I have only the memory of “Blue Roses,” a single kiss and a glass menagerie, for example?  Why is it that when Peter pushes Klara’s wheelchair off the cliff that it doesn’t matter because, of course, Klara will walk because of the healthy, natural setting that Heidi’s home provides?  This isn’t how it happens in real life, yet we mustn’t have a sad ending with a person remaining a burden.  How do these and other literary examples relate to real disabled lives, lived in a real world where a Princeton philosopher…advocates death for these “problem” lives, who, he assures us, cannot know happiness?  …I even wonder whether this graduate degree, if I earn it, will help defend me against the prejudice facing a person with a disability who seeks a profession.  The job service counselor “trained” to help people with disabilities might indeed tell me again that a university degree means nothing and ask, again, why I haven’t enrolled in a program to teach me how to wash dishes and clear tables.  If all else fails, I realize, I can always be a Wal-Mart greeter.

 

The outcropping of bitterness may belie “Brave Becky,” but it represents the real and honest Rebecca I have come to love and respect. Rebecca desires romantic love and marriage, but she often despairs of that dream, saying that she guesses she will have to resign herself to being a “Mormon nun.”  A recent letter from her ends with a sad observation that tears at my heart:  “I had thought life would hold more for me than this….”  It is this flesh and blood, real, complex, hopeful and yet despairing person I have tried to represent on paper—an impossibility after all.

The writer of a Profile engages in the dubious art of biography and is subject to the same problems as biographers.  To have a cache of letters and papers from the subject of the Profile, would seem, for instance, to give a biographical edge, and to have living feedback from the subject ought to realize the biographer’s dream.  But it doesn’t turn out that way, unfortunately.  Subjects, no matter how open or seemingly open, keep their privacies, and biographers, no matter how earnest and desirous of “objectivity”—that elusive, impossible dream—cannot dissolve their own biases and beliefs.  Janet Malcolm, who spends her life as a biographer, a fine one, has come to look askance at her own art.  She has come to realize, as anyone who tries honestly to capture a life on the page, there are many “cliffs of fall.” Malcolm has done prodigious immersion research on the lives of Sylvia Plath and Anton Chekhov, for example. Yet even with her commitment to discovering the truth of these two complex lives, Malcolm admits a sort of necessary failure.  Of Chekhov she writes,

 

Chekhov’s privacy is safe from the biographer’s attempts upon it—as, indeed, are all privacies, even those of the most apparently open and even exhibitionistic natures.  The letters and journals we leave behind and the impressions we have made on our contemporaries are the mere husk of the kernel of our essential life.  When we die, the kernel is buried with us.  This is the horror and pity of death and the reason for the inescapable triviality of biography.

 

How can I know the prayers Becky whispers before sleep?  And what right have I to reveal her confessions to me of romantic love and longing.  These are the sort of confidences that a biographer, respectful of her subject, withholds.  Call that bias and slant who will; I am not ashamed to hold my peace regarding certain privacies.

In fact, I have come to see that Malcolm’s real subject, after all, relates to the biographer almost as to the subject.  In her consideration of Anne Stevenson’s Bitter Fame, a controversial biography of Plath, the biographer’s life and its particular play on the subject’s life becomes the point Malcolm most wants to make.  Malcolm quotes a long, candid letter she received from Stevenson, Stevenson having come to the same truth about the elusive nature of biographical truth: 

 

I disagree with Alvarez, with Plath, with Ted Hughes (perhaps) when they contend that the pursuit of the absolute has anything to do with the pursuit of truth.  Truth is, in its nature, multiple and contradictory, part of the flux of history, untrappable in language.  The only real road to truth is through doubt and tolerance…. One more thing.  Although I never contemplated suicide, for a long time in the 1970‘s I was, through my weakness and misery, to all and intents and purposes an alcoholic. I have never confessed that to anyone outside the family, but I think you ought to know that my life has not been that of a nice bourgeois wife and mother.  I left my children in Oxford (no, in Glasgow) in 1971, to the care of their father and grandparents, and went to live with a poet in a sort of a desperate bid for my ‘real’ self.  I don’t know if it was the time that was responsible (the infectious counterculture) or my own New England puritan upbringing.  In any case, I spent ten or so years ‘in the wilderness’—writing Correspondences [about Plath and Hughes] of course.  But—and this is the point—divided.  I now try to forget, as far as possible, those nightmare years.  But I do know firsthand something of what Sylvia and Ted suffered, also…I cannot believe that a biographer who does not understand the pervading madness of S’s time can possibly understand her despair….

 

            What can I, as the writer of this Profile really know about living with crippling disability?  And how can I keep from imposing my belief and disbelief on the portrait I write of Becky/ Rebecca?  I can offer only this study in partials and half-truths, and then hope, after all, that Becky will recognize something of herself in it.