My hip is feeling better right now. I know it’s there, but tonight it is not grinding away at wit and goodwill as it sometimes does, and for that I am grateful. In an interview recently I was asked if artists today have responsibilities to those who come after us. I said something about doing our best work, about setting the bar as high as we can. But what I wish I’d said is what I hope: to keep the knives sharp and the guitar tuned, to leave the door open, not to drink up all the liquor or breathe up all the air. After that...
Poet of Cripples
Let me be a poet of cripples,
of hollow men and boys groping
to be whole, of girls limping toward
womanhood and women reaching back,
all slipping and falling toward the cavern
we carry within, our hidden void,
a place for each to become full, whole,
room of our own, space to grow in ways
unimaginable to the straight
and the narrow, the small and similar,
the poor, normal ones who do not know
their poverty. Look with care, look deep.
Know that you are a cripple too.
I sing for cripples; I sing for you.
Normal
Across Oak Park Avenue
is a city park, lush
and busy, where men play softball all
evening, too far away
to watch, their dim voices
drifting across the green. Their cars line
the streets as far
as I can see. Sammy and I,
Robert and I, Hoffmann and I call out
the makes and models
as the cars pass. Dodge Dart.
Chevy Nova. We are seldom wrong—Corvair,
Pontiac GTO—we who drive
wheelchairs and banana carts—
Mustang, VW, Rambler American—who have not yet
rounded second—
’57 Chevy! My dad had one of those—
who watch out windows a world so soft—T-bird—
so fair—Corvette—
so normal—Ford Fairlane—
a world going on, going by, going home.
Poems with Disabilities
I’m sorry—this space is reserved
for poems with disabilities. I know
it’s one of the best spaces in the book,
but the Poems with Disabilities Act
requires us to make all reasonable
accommodations for poems that aren’t
normal. There is a nice space just
a few pages over—in fact (don’t
tell anyone) I think it’s better
than this one, I myself prefer it.
Actually I don’t see any of those
poems right now myself, but you never know
when one might show up, so we have to keep
this space open. You can’t always tell
just from looking at them either. Sometimes
they’ll look just like a regular poem
when they roll in...you’re reading along
and suddenly everything
changes, the world tilts
a little, angle of vision
jumps, your entrails aren’t
where you left them. You
remember your aunt died
of cancer at just your age
and maybe yesterday’s twinge means
something after all. Your sloppy,
fragile heart beats
a little faster
and then you know.
You just know:
the poem
is right
where it
belongs.
From the Surgeons: Drs. Sofield, Louis, Hark,
Alfini, Millar, Baehr, Bevan-Thomas, Tsatsos,
Ericson, and Bennan
6-10-60. History. This child is the second of three
children—the other two are perfectly normal. He was the product
of a normal pregnancy and delivery. At birth it was noted
that the left lower extremity was shorter than the right. The child
had a fragmentation and rodding of the left femur
for stimulation of bone growth. Prior to that procedure a 2” discrepancy
existed. This procedure was repeated in 1957 and again in 1958. Prior
to the procedure in 1958 a 2” discrepancy was again noted. The child’s
early development was normal. He has, of course, been periodically set back
in his physical progress because of the surgical procedures.
6-10-60. Physical Examination. Head: There is nothing
abnormal about the head. Left lower extremity: There appears
to be only a very moderate degree of atrophy in the left thigh, but
this is explainable on the basis of his surgical procedures.
Gait is moderately abnormal but caused only
by the leg length discrepancy.
7-28-61. History. He began sitting at six months of age, walked
at one year, and began talking at about one year of age. There have been
some periods of regression following the early surgical procedures. The boy
is attending school and is apparently well adjusted.
7-28-61. Physical Examination. Examination reveals a slight
compensatory scoliosis. This is corrected by equalization of leg lengths.
This boy walks with a left short leg limp. He is able to run without difficulty,
and can hop on his right foot, but he is unable to hop on his left foot.
When performing the duck waddle his left leg leads the right.
12-7-62. Neurological Examination. Deep tendon reflexes
are physiological. There is a slight diminution of the left knee jerk
as contrasted with that on the right. No sensory loss nor pathologic reflexes.
8-28-63. Progress Notes. The mother relates that the boy has been
quite weak, probably from the multiple surgical procedures
done on this thigh. Quadriceps are rather bound down at the knee.
The leg length discrepancy is 3” and it is very difficult
to have a satisfactory shoe lift on this dimension. A long leg brace
was ordered with knee locks and with a 2” pylon extension.
11-8-63. Progress Notes. This boy has received his long leg brace
with the caliper extension today. The brace is satisfactory,
except for the fact that the ankle joint is rigid and
he has a great deal of difficulty getting his trousers on and off
and needs to split the seams.
8-14-64. Progress Notes. This child who is almost 10 years of age
is wearing a long leg brace with a stilt on it, but the mother says
that he objects to this and apparently is undergoing considerable
emotional disturbance. The mother has noticed this since his return
from the hospital at which time he had a repeat fragmentation and rodding.
4-7-67. Physical Examination. Lower extremities: Circumference:
There is obvious atrophy of the left thigh: This cannot
be accurately compared with the right because of the shortness
of the extremity and the dislocation of the patella.
6-6-69. History. The child is in the ninth grade and does fair
and goes to a regular school.
10-30-70. Progress Notes. Final Discharge. The patient is essentially
unchanged since last visit. His leg lengths measured to the heel
on the right measures 101 and 86 on the left from the anterior superior
iliac spine. He has occasional episodes of pain. He is still
wearing the long leg brace with the high lift below
and there was no indication on the mother’s part that she plans
on havi
ng anything done in the near future.
Lost Hyoid
Two hundred bones in the human body,
they wait for me to die so they can tell
their stories uninterrupted—I wait
for different reasons, surround each bone
with my ignorance, phalanges, metacarpals,
spongy hollows in surprising places,
it’s the joints that give the trouble, the twist,
the shout, worn away, worn outside
in, I knew a woman, lovely in her bones,
I jousted with the emperor of bones,
he always wins, talus, fibula, tibia,
calcium and phosphorus are his elements,
and time weeps for no hand, radius, ulna,
humerus—insert joke here—the smallest bone
is the stapes, the stirrup which rides across
your ear—hear? But the lost hyoid connects—
roll this over your tongue—to no other bone.
Kenny Fries
from STARING BACK:
THE DISABILITY EXPERIENCE FROM THE INSIDE OUT
We’ve been shadow spirits lost between our nondisabled (for most of us) upbringing
and our disability lessons in life.—CAROL GILL, Ph.D.
Over two decades ago, when I first began searching for the words with which to begin speaking about my own experience living with a congenital physical disability, a disability I was born with for no known scientific reason, a disability with no medical name except for the generic “congenital deformities of the lower extremities”—one way of saying I was missing bones in both legs. In the summer of 1989, I took the initial steps of finding the language, unearthing the images, shaping the forms with which I could express an experience I had never read about before, so that my experience as a person with a disability could become meaningful to others.
What I remember most about that summer is wanting to throw all those drafts away, not thinking them poems. Not having a role model whose steps I could follow, unsure of my own identity as both a writer and a person who lives with a disability, I felt like one of those “shadow spirits” Carol Gill writes about, unable to meld successfully on the page the nondisabled world I lived in with my experience of being disabled in that world.
I also felt afraid. I felt a fear that Anne Finger was writing about at almost the same time in Past Due: A Story of Disability, Pregnancy, and Birth. In Past Due, Finger recounts her experience at a feminist conference when she talked about her inhumane treatment as a child in the hospital because of complications from polio. After Finger publicly shared her story, a colleague said: “If you had been my child, I would have killed you before I let that happen. I would have killed myself, too.” Finger reacted:
My heart stops. She is telling me I should not be alive. It is my old fear come true. That if you talk about the pain, people will say, “See it isn’t worth it. You would be better off dead.”
If this was a friend’s response to Finger’s experience, how would my friends, not to mention those who did not know me, react to what I had to say? And, after knowing what I had gone through, how could they believe there was so much more to living with my disability than pain?
A lot has happened since I first began to write about my experiences living with a disability. In 1990, the process—which began in 1968 with the Architectural Barriers Act and sections 504 and P.L. 94-162 of the Rehabilitation Act of 1973—culminated in the passage of the Americans with Disabilities Act, called the most far-reaching civil rights legislation since the Civil Rights Act of 1964. As historian Paul K. Longmore points out, with the ADA’s passage, even as the “quest for civil rights, for equal access and equal opportunity, for inclusion” continues, we have moved on to a second phase, which he defines as “a quest for collective identity” in which “the task is to explore or to create a disability culture”:
Beyond proclamations of pride, deaf and disabled people have been uncovering or formulating sets of alternative values derived from within the deaf and disabled experience...They declare they prize not self-sufficiency, but self-determination, not independence but interdependence, not functional separateness but personal connection, not physical autonomy but human community.
As we move away from viewing disability within the confines of the moral and medical models, we are moving toward a social definition of disability. As social scientist Victor Finkelstein so concisely states, whereas in the medical model the “focus of attention is firmly on the physically impaired individual,” now it shifts to where “the focus is the nature of society which disables physically impaired people.”
That the disability experience is not solely rooted in bodily impairment is evidenced by how the definition of disability changes from society to society. What is considered a disability in some societies, for example club—or flat—feet is not considered a disability in others. And what was considered a disability in our culture years ago would no longer be considered a disability today. Consider poor eyesight before eyeglasses, for example. In a preliterate, agrarian society, visual acuity, the need to read print or traffic signs, was not necessary or could be compensated for.
Viewed from this perspective, it is clear that it is the barriers, both physical and attitudinal, that need to be changed, not the impairments or the bodies with which we live. I have asked numerous disabled persons what causes them more difficulty, the disability itself or the discriminatory barriers put in their way. The answer is overwhelmingly the latter.
The experiences of those with disabilities prove that there are countless different ways of moving through the world. But old models die hard. Literature, which reflects the richness of the different ways we conceptualize how we live within the world and the ways the world lives within us, thankfully does not, and should not, conform to the dictates of current political or social discourse.
What differentiates the oppression and discrimination of the disabled from other traditionally marginalized groups is that in one quick instant—a slip in the bathtub, a virus-borne disease—anyone can join us, the disabled (currently estimated at 54 million in the United States). In fact, at some time in our lives, each and every one of us, sooner or later, will be, whether for short term or long, in some way disabled. Because of this, those of us who live with disabilities are viewed with a fear, though irrational, that is perhaps too easy to understand. (And if there’s one thing those of us who live with disabilities understand, it is change.) Ultimately, those of us who live with disabilities are too often treated as unwelcome reminders of the mortality that is the fate of us all.
Over the years, I learned that I was not alone in my struggle to give voice to the disability experience, an experience that throughout history has been marginalized or co-opted, if not ignored. It is my hope that my work is just one step in an ongoing effort to bring the lives of those of us who live with disabilities closer to the center, where a truer understanding of the richness of our lives can be forged.
Excavation
Tonight, when I take off my shoes:
three toes on each twisted foot.
I touch the rough skin. The holes
where the pins were. The scars.
If I touch them long enough will I find
those who never touched me? Or those
who did? Freak, midget, three-toed
bastard. Words I’ve always heard.
Disabled, crippled, deformed. Words
I was given. But tonight I go back
farther, want more, te
ar deeper into
my skin. Peeling it back I reveal
the bones at birth I wasn’t given—
the place where no one speaks a word.
Body Language
What is a scar if not the memory of a once open wound?
You press your finger between my toes, slide
the soap up the side of my leg, until you reach
the scar with the two holes, where the pins were
inserted twenty years ago. Leaning back, I
remember how I pulled the pin from my leg, how
in a waist-high cast, I dragged myself
from my room to show my parents what I had done.
Your hand on my scar brings me back to the tub
and I want to ask you: What do you feel
when you touch me there? I want you to ask me:
What are you feeling now? But we do not speak.
You drop the soap in the water and I continue
washing, alone. Do you know my father would
bathe my feet, as you do, as if it was the most
natural thing. But up to now, I have allowed
only two pair of hands to touch me there,
to be the salve for what still feels like an open wound.
The skin has healed but the scars grow deeper—
When you touch them what do they tell you about my life?