Author's introduction:
I grew up in a world very different from the one I now inhabit, a world of schools and camps for people exiled from other places. We were exiled because of disability. We called our ghettos the Crip World -- although many of its inhabitants weren't "crips" at all but had other kinds of disabilities. I myself was (and am) a crip. A proud, hard-core capital letter Crip, in fact.
It was a strange world, to be sure, and it had profound effects on everyone in it. From a shockingly early age, I came to think that making sense of this world should be part of my life's work. However, none of my analyses, expositions, or polemics ever captured it. Maybe because that world didn't really, at bottom, make sense.
So, abandoning the goal of rationalization, I engaged in simple story telling. For years I regaled friends and family with tales of the Crip World. More than once, I was told I should write them down. But memoir didn't work either. I turned to fiction. When I created a young woman named Jean and started telling a story through her, I started to think, for the first time, that I might be able to say what I want to say.
Jean is17 years old, entirely accustomed to life with significant physical limitations: due to cerebral palsy, she cannot walk, dress, or feed herself, and her speech is difficult to understand. Her loving parents have succeeded remarkably well in giving her a "normal life." She is a good student in a public high school. Everyone in her home town says she "fits right in" and is "just like a normal girl." Now her parents have decided it's time for her to experience being away from home. Thus, she lands in the middle of the Crip World -- to spend ten days in a place called Camp Courage. It is a place with its own language, customs, traditions, arcane knowledge, and humor. With Jean, the reader learns about games in which losing is not permitted, BM charts, and a peculiar, stunted kind of sexuality. And with Jean, the reader joins a different kind of human community.
In essence, Accidents of Nature is a coming of age story with a peculiar crip sensibility. For most people, coming of age means taking responsibility, assuming control, acting autonomously as an independent moral agent. For Jean coming of age involves those things, and more. Coming of age also means recognizing what she cannot control. It means surrendering the easy optimism by which she has always negotiated her place in the world. At age 17, she is forced to confront fundamental limits and fears that most people face, if at all, as they approach old age. Her story is a quiet drama of the unsettling of a self, the unbalancing of an equilibrium.
By the end of the story, Jean has realized that disability will fundamentally alter her life, but she has no way of knowing how. As she undertakes her voyage toward womanhood, she knows she is traveling into the unknown, even into the unknowable. She sets out to find "a new kind of trust that lives with open eyes."
In mainstream media, literary fiction, and ancient myth, disability typically functions as a metaphor for something else. It may be something to cure -- to prove the healer's miracle-making power. A mark of the Spirit -- or of the Devil. A redemptive force. A test of character. Or just a cheesy plot device.
My aim is to tell a real human story about characters who have disabilities -- to make us subjects, not objects. I want to tell a story from our perspective. As a social institution, Camp Courage was created by Normal World for people with disabilities: therefore, the rules, the formal programming, the structures of life reflect mainstream stereotypes about disability. However, as a community, Camp Courage is created by people with disabilities. Whenever powerless people make a community, there are interesting, unintended consequences (e.g., as described by Eugene Genovese in Roll Jordan Roll: the World the Slaves Made). Shifting the point of view inevitably produces a story that is wholly new.
I am presenting here three excerpts from the manuscript in its current incarnation. Each is followed by a brief comment.
Harriet McBryde Johnson
May 1999
Accidents of Nature
In the middle of North Carolina, there is a beach that has no ocean. Eons ago, the sea was there; the impact of surf and wind built up huge dunes. Then the ocean withdrew, foot by foot, behind silt the rivers laid down. Today, a coastal plain, over a hundred miles wide, separates the sand hills from the ocean that made them.
Now the sandy land is overlaid with golf courses and planned communities. Before the real estate boom, it was thought best suited to timber. Camp Courage was built on a forty-five acre tract that had been planted in pine forty years before. Once planted, the trees were left alone by absentee owners.
With active management, they would have been thinned at regular intervals. The weaker ones would have been taken. The others, judged more likely to thrive, would have been nourished. The resulting regiment of uniform, straight trunks, would have been ideally suited for the market, with just enough space between them to bring in machines when it came time to turn them into logs.
With neglect, however, they grew dense. Roots plunged deep to reach the water that filtered through the sand. Trunks twisted toward the sun; limbs were so entangled that it was hard to say where one tree ended and another began. Low to the ground grew a struggling crowd of seedlings, waiting for a chance to spring up when wind or disease took down one of the big old trees. Some made it. Spindly young pines shot up amid the old growth.
In the deep shade below the smallest trees grew a hardy crop of weeds: nameless grasses, leaves, and vines not planted by design but accidentally sown by wind and animals. The weeds could do without sun. Their short roots found nourishment enough in the musty layer of decaying plant matter. They got their living from their own remains.
Most of the tract was covered with those woods. A single dirt road cut through the trees and brush, to wind up and down and around the dunes. Not counting the lake, Camp Courage occupied about three acres. There the pines had been thinned and cleared of underbrush. The remaining trees had plenty of room to thrive. Periodically, they were inspected, trimmed, fertilized, and protected from parasites. However, at this stage no amount of management could change their basic nature. Thin and thick, twisted and shapely, bent and straight, they remained, unrehabilitated.
They were products of what is called the natural law of survival of the fittest. But their fitness was not defined by human needs, or market forces, or any grand design. In truth, they did not survive because they were fit. Rather, they were proven fit because they survived. They survived by accident.
Comment: Most of my readers say I should scrap the prologue and jump into
the story proper. I'm kind of attached to it.
I'm generally very sparing with metaphor. I think this story calls for
straight forward narrative. I stick very closely to my central character's
specific perceptions -- through the five senses -- of people, places, things,
and events. However, for whatever reason, I like opening with this long
metaphor, to nail down some of the central themes and to establish a certain
attitude toward disability. I hope I've communicated the idea that disability
is something that just is. But at the same time, I hope to show that
disability is, in its own way, a source of strength and beauty.
As I landed in my chair, the plastic sling seat burned through my cotton-polyester clothes. My shoulders were sticky with my father's sweat where I'd taken his arm to get out of the car.
A girl in shorts came to the car. "I'm Sue, the senior counselor in Jean's cabin. Carole's around here somewhere." She handed my mother a clip board with forms to fill out.
"Pleased to meet you," my parents said in unison. I sat in silence beside the car as the sun beat down on my head.
"Has Jean ever spent a night away from home?" Sue asked.
"No," my father answered.
"Well, only when we were with her, on family trips and whatnot," my mother said, working on the forms on the hood of the station wagon.
My sister Cindy stayed in the car, sprawled in the back seat.
Sue said, "We have a lot of first-time campers this time. Jean'll fit right in."
My mother smiled, a little nervously. "Well, I know she will. She always does. You know, she's in public high school. Going to graduate next year."
My father beamed. "With honors, I might add. Beta Club. Key Club. I-don't-know-what-all Club. And perfect attendance for seven years in a row--" He was teasing me.
"At any rate," my mother interrupted, "we thought it would be good for her to have an experience away from home. Away from us too. She needs to find out she can survive without us. She's never let cerebral palsy hold her back." My mother smiled her worried smile.
I shrugged. For myself, I felt no need to prove anything. But if this is what my parents wanted, I could indulge them. While I was at camp, my family would be sleeping in a tent on the beach.
"I know you'll have a great time, Jean," Sue said.
I stuttered.
Sue rushed to cover the lag in the conversation. "Hey, that's a really cute outfit, Jean." It was a culotte suit in a funny print -- the words NO NO NO repeated all over.
My Dad grinned wide. "Like I told her this morning: just look at those clothes to remember what to tell the boys at camp!" He rubbed my head the same way he'd rubbed it when he made the same joke that morning, the same way he always rubbed his best dog. He always made dumb jokes like that, and I always laughed. I laughed again, but I hoped the talking would end soon and they would get me out of the sun.
My mother handed Sue the clip board. "Take a look at these."
Sue showed them where they had to sign. They signed. Along with the intake forms, I was handed over in the sandy parking area. My Mom bent down. I tilted my head back for a kiss that smelled like face powder and felt like lip stick. My Dad gave me a noisy smack on the forehead and a friendly slap on the back. "Now try to behave yourself, girl," he laughed.
I wondered if it would be this hot the whole time.
That was it. I should have had a spaz attack, but I didn't. There should have been a strong emotion of some kind, but there wasn't. Ever since that August in 1970, I've pressed hard to squeeze something out of my memory, but I always find it dry. I have to accept it. When I leaned back to receive good- bye kisses from my Mom and Dad, all I felt was hot.
Comment: I genuinely love Jean's caring, clueless parents. They have no
idea what they are handing her over to.
Excerpt from Day Seven (night):
By now, the drill was easy. I undressed in the cabin. Sue
covered me with a beach towel and ran me across the path.
First, the toilet. Then, the sink. I opened my mouth to my
toothbrush. Sue brushed and held a cup of water with a straw. I
took in some water and spat it out. She rinsed the toothbrush,
brushed away the larger chunks of tooth paste, and took a wet
washcloth to my chin and neck. Next, to the shower.
"Sue!" It was Peggy Jo screaming from outside. "Come
quick! It's Denise! She's having a seizure!"
"I'm leaving Jean here!" She bolted out the door.
I was left in front of the row of showers.
I could see that inhibitions had broken down during our time
at camp. The first night, the counselors had given showers fully
dressed. Now, most were stripped down to bra and panties, and
some were naked. All of the campers were completely exposed.
I looked away, but soon I was tired of studying the stripes
on the beach towel on my lap. I decided to look at the people in
the room, naked or not.
They were a strange assortment of bodies. I had become
accustomed to them in their summer clothes, even in bathing
suits. But seeing them naked was something else.
There was Yvonne. Every morning she put a clean sock on her
stump and strapped her leg on and became one of the crowd. No
one noticed the artificial leg sticking out of her shorts. But
here, attached to a naked body, otherwise normal, even beautiful,
it became strange again. Standing in the shower, she unhooked
the leather harness and tossed the plastic leg aside. She peeled
the white sock off her stump. Balancing on a grab bar, she stood
there, naked, one-legged, and started the shower. Sitting on a
shower bench, stump jutting outward, she soaped herself and
rinsed and squeezed shampoo into the palm of her hand. She
rubbed shampoo into her hair, just like a two-legged girl with no
thought of a stump. And why not? She was a one-legged girl,
that's all. She had to be used to it.
There were other shapes. There was an interesting back,
with a big fleshy bulge. Dangling from the body were tiny legs,
frozen in their infant state. On another bench was a camper with
a severe spinal curvature. Her back was so twisted that she sat
on her side. Her breasts rested on her lap like two pillows on a
mattress.
I stopped seeing people and saw body parts. Knees that
looked enormous because the shin muscles were gone. Skinny,
useless limbs. Humps, bumps, and knots. Bags, tape, and gauze.
Stomachs with holes in them, and plastic tubes through which
urine and feces could escape. And places where parts were
missing.
At the far end of the room a spazzo showered alone. There
was something boyish about her body; the female parts seemed out
of place. There was no softness about her. Over the whole body
-- the neck, the chest, the stomach, the hips, the arms, the legs
-- the flesh was firm and muscular. She looked like an athlete.
The discus thrower. As the spazzo moved under the shower, the
muscles of back, arms, and legs rippled. Ridges rose and fell as
the voluntary muscles struggled against the resistance of
involuntary spastic motions. I could plainly see her big muscle
groups at work beneath the tight skin.
Tight fingers gripped a wet washcloth. The arm
straightened, flexing against its own resistance. It dragged the
washcloth across a bar of soap on the bench beside her. She
scraped the rag over her other arm and batted it at her neck and
trunk. Then she leaned forward into the falling water. Still
holding the limp cloth, she tried to stick up one leg.
With that effort, the spazzo lost control. One arm and one
leg jerked out, and the hand sent the soap flying off the bench.
As the soap continued its trajectory across the wet tile floor, a
counselor crouched down and caught it on the fly.
It was truly an elegant catch. I saw the nude, perfect body
of the counselor crouch down, her knees and hips bend in perfect
harmony, her heels rise from the floor to touch her buttocks, her
weight shift to the balls of her feet. At the same instant, her
toes spread out and pressed the floor with unbearable loveliness,
a slender arm instinctively reached out, and perfect fingers
scooped up the soap. Just as gracefully, she stood up, her feet
firmly planted on the floor. She took three long steps, then
leaned over in an arabesque and dropped the soap on the bench
from which it had been shot. It made my heart ache.
The spazzo looked up and grinned her thanks. In that face I
saw the same silly grin I always saw in photographs of myself.
The natural grin of a spazzo. And then I knew: that absurd body
was exactly like my own.
The rest of the room no longer existed in my consciousness.
The familiar noises of the bathroom -- human voices talking,
laughing, hollering, showers running, johns flushing, the screen
door slamming -- merged into an indistinct din. My whole self
concentrated on the image of the spazzo, wet and shiny under the
harsh fluorescent lights.
Whether it took hours or seconds, I couldn't have said: the
spazzo finished her shower. The perfect girl counselor came to
help the spazzo from the shower to her chair. As the counselor
supported her, the spazzo pressed her feet on the floor to stand
up. The counselor wrapped a beautiful arm around the spazzo's
back and walked with stately, measured steps.
I couldn't take my eyes off their feet. The counselor's
feet caressed the wet tile floor. Their every movement asserted
confidence, comfort, and control. Those feet were at home in the
world. Beside them were two alien feet, strangers stomping
against the tile. The parts of those feet didn't work together.
The spazzo carried all her weight right on her heels. The ankles
were completely rigid. The toes stuck straight up. They were
the feet of a Fool.
Watching it in motion, I despised that spazzo's body and my
own. The normal girl's body was made up of lovely curves, a
perfection of balance and proportion. Her movements reflected
the harmony of her physical composition. She produced arcs and
waves as she moved. Separate movements flowed elegantly into a
whole action; it was like music. She would be a worthy subject
for a great artist. The spazzo was nothing but straight lines
and angles. Her pieces moved separately and sequentially, when
she could get them to move at all. For her portrait a stick
figure would do.
By the time the spazzo plopped into her wheelchair, the air,
normally hot and steamy as a sauna, had been transformed. It was
electric. A powerful energy was at work, but not the kind of
force that knocks its objects flat or blows them to bits.
Rather, its action was invisible. I was the object of two
opposing forces in perfect equilibrium, a magnetism borne of
fascination and horror. Thus attracted and repelled, suspended
between two poles, I was powerless to move. It could be called
inertia. But, sitting still and silent, I was hardly a body at
rest.
Comment: I've worked very hard on this section. It's a turning point
in Jean's shaking-up -- in her redefinition of who she is. I want it to
be emotionally engaging, dramatic in its silence and stillness. I also
want the reader to see those naked bodies. First of all, I want the
reader to see them as Jean sees them. But at the same time, I want the
reader to see what Jean herself cannot yet appreciate -- that these
bodies are, in their peculiar ways, really beautiful.