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ALEIDOSCOPE
EXPLORING THE EXPERIENCE OF DISABILITY THROUGH LITERATURE AND THE FINE ARTS
Number 73
Summer/Fall Online 2016
ALEIDOSCOPE
Summer/Fall 2016
Number 73
EXPLORING THE EXPERIENCE OF DISABILITY THROUGH LITERATURE AND THE FINE ARTS
Contents
The Leper
Olaf Kroneman
Coincidence
EDITORIAL NOTE
Coping with Change
40
Learning to Embrace
New Possibilities
Linda S. Slusser
49
POETRY
Bob Johnston
Boundaries
Saving the Good Doctor
PERSONAL ESSAY
Air Burbles and Other Oddities
32
Sandy Palmer
Shirley Adelman
10
L. F. Young
FEATURED ART
Liz Whiteacre
Stutter
16
Ash
Jake Wolff
13
Jerry Hauser
FICTION
The Shellshock Letters
Glenda Barrett
War Everywhere
Susan Kennedy
52
Ruth Z. Deming
FEATURED ESSAY
Forward Momentum
62
14
D. E. Harris
I Am Different and
It Must Be Duly Noted
46
Rainbow Girl
in Autism Classroom
Peter L. Pingerelli
15
20
The Piano
Caitlin Barasch
Wheelin
57
Glenda Barrett
22
A Meditation
on the True Self
Lynsie Mae Buteyn
59
18
19
19
Michael S. Morris
Threshold
30
Kevin Heaton
A Reader Implores
a Modern Poet
31
31
Will Leadbeater
43
43
Darren C. Demaree
predacious wind
43
e. smith sleigh
44
Goldi-lock-less
44
The Gloriosas
CREATIVE NONFICTION
Making Sense of the Noise
27
45
45
Marketable Phenomena
Fall
58
64
Sean J. Mahoney
Nancy Scott
Pendulum
Urban Portraits 3:
The Pigeon Feeder
51
61
63
Parkinsons
61
Yuan Changming
Sheryl L. Nelms
Relativity
58
Stigma
58
Leah Vitello
Find Me a Box
Julia C. Spring
63
65
Mike Traber
BIOGRAPHICAL NOTES
66
Staff
PUBLISHER
Howard Taylor, President/CEO
United Disability Services
EDITOR-IN-CHIEF
Gail Willmott, M.Ed.
MANAGING EDITOR
Lisa Armstrong
ART COORDINATOR
Sandy Palmer
EDITORIAL ASSISTANTS
Lynne Came
Angela Miller
Kathleen Sarver
EDITOR-IN-CHIEF EMERITUS
Darshan Perusek, Ph.D.
HONORARY EDITOR
Phyllis Boerner
MANUSCRIPT REVIEW PANEL
Fiction Review
Mark Decker, Ph.D.
Bloomsburg University
Bloomsburg, Pennsylvania
Poetry Review
Sandra J. Lindow
University of Wisconsin-Stout
Menomonie, Wisconsin
EDITORIAL NOTE
POETRY
Glenda Barrett
Boundaries
Never sure why, but Ive always
liked gates, worn wooden ones
that enter grassy pastures,
ornate gates leading to mansions,
and metal ones at cemeteries.
Even though I liked their looks,
I had no idea how to be a gatekeeper.
In my own life for many years,
I left my gate standing wide open,
and allowed everyone to enter.
Some people who walked through
were hurtful, took advantage,
and demanded their own way,
making me resentful.
With age and wisdom I learned
to keep my gate locked tightly,
and take my time in deciding
who and when I wanted to enter.
No whiners, complainers, or folks
without compassion could come in.
I learned the word, No, was
not a bad word but a good one.
Some didnt want to understand
and walked away puffed. I found
being a gatekeeper was really hard,
but the rewards were well worth it
because thats when I found respect.
Shirley Adelman
War Everywhere
It is Spring.
A rabbit made his home
In my yard and did not run away,
When I spoke to him. I hold onto
This picture in a dark, windowless
Room with six TVs blasting-----Death notices:
For patients plugged in
To bags of diluted poisons.
FEATURED ESSAY
Forward Momentum
Susan Kennedy
We arrived at the rental shop breakfasted and prepared to hurt. After checking
in and tucking away the provided ferry
tickets, my husband and I waited with
other riders for instruction. I spied rows
of bicycles at the far end of the room.
Okay, listen up, a guide said, holding a pointer to a large map of the Bay
Area. No riding until you reach the
path in Aquatic Park, she said and
tapped a nearby square. She traced
routes and indicated photos around the
perimeter to highlight landmarks with
the poise of a seasoned lecturer. She
wasted no effort, pausing only to raise
her dark eyebrows. A tech will make
sure your bike fits you. Please wear
your helmet. She set down her pointer.
6
after eye surgeries. A year after an uncertain summer, we nudged each other
forward, paddling through the rapids
of loss in our proverbial lifeboat. Most
boats in life row steadier with pairs
the work halved and the joy shared. No
struggles, no life.
ALEIDOSCOPE
Gail Willmott, Editor-in-Chief
Kaleidoscope magazine has a creative focus that examines the experience of disability through literature and the fine arts. A
pioneer in the field of disability studies, this award-winning publication expresses the diversity of the disability experience from
a variety of perspectives including: individuals, families, friends, caregivers, educators and healthcare professionals, among
others. The material chosen for Kaleidoscope challenges and overcomes stereotypical, patronizing, and sentimental attitudes
about disability through nonfiction, fiction, poetry, and visual art. Although the content focuses on aspects related to disability,
writers with and without disabilities are welcome to submit their work.
POETRY
Liz Whiteacre
PERSONAL ESSAY
grow. It was this nerve pain that would haunt me for months
during my recovery. The nerves, as it was explained to me,
were sending the wrong messages to my brain because they
were new and developing memory. A light touch on my
foot would feel like a red hot knife cutting deep into flesh,
or the message would be sent to the brain that my foot was
on fire and being electrically shocked. I was taking so many
pain pills and medication to help quiet my rapidly misfiring nerves, that I was in a fog most days. The pink color was
not returning to my foot as was expected, and an infection
turned nasty. Five months after the first operation, I went
under the knife again, this time to remove an infected big
toe. After another two weeks of little to no improvement with
the circulation in my lower right leg, we (my surgeon and
I) decided to proceed with a below knee amputation. I was
told of this possibility at the very beginning, and I had been
mentally preparing myself for the last few weeks for this end
result. By then the nerve pain in both feet was so bad, especially in my right foot, that I agreed immediately. Just please
take my pain away.
Fast forward a bit and its been five months since The Operation. Thats what I will always call it. That day I became
a one-legged man. My stump, that portion of my leg just
below my knee that was beautifully sculpted by the surgeon
into a nice round end, had healed enough that I could start to
introduce some weight to it again. The thoughts of getting up
and out of that wheelchair danced in my head.
Before I was forced into this life detour, I would have had
questions if I saw someone with an artificial hand, or if I met
someone with an artificial leg. I would wonder how they put
that thing on, what in the world held it on, and how did they
manage in their day-to-day lives? But I would never ask. I
was much too embarrassed to ask to have a look at something so personal. Thats why I am writing this essay, to let
you into my personal space, just for a little while.
Prosthetic devices are as varied as the injury itself. Firstly,
it must be looked on as an assistive tool and nothing more.
Today, these devices are made of titanium for its strength,
and aluminium for its lightweight properties, and electronics
in some cases, that actually have computer brains at their
core to make them operate as close as possible to the real
limb or hand or foot. Once the limb is completely healed, the
first step to getting an artificial leg is to make a mold. The
process is the same for any device and each prosthetic is as
11
What most people think is that the stump of the leg fits into
the socket and bottoms out into the rounded cup at the end.
What actually happens is the leg is sandwiched between
the ridged sides of the socket, and is supported at the knee
joint, so the stump and end of the leg float in the socket,
and the only point of contact is at the very strong knee joint.
While putting weight on the leg, the pressure is transferred
to the side of the knee, and when the step is finished, weight
is then transferred to the good leg, and the patient is walking. Dealing with the initial pain of bearing weight on a
limb so severely mutilated was very tough at first. Every
step was agony as I struggled with learning how to control
and once again master my balance. I had lost all my upper
body strength, and because my diet was not restricted, I
gained about sixty pounds while lying around in bed unable
to move for so long. Extra weight was not my friend, and
losing it was now imperative.
At this stage of my rehabilitation I had mastered the twowheeled walker. Slide hop. Slide hop. It was awkward with
one leg, but it was mobility, and it got me out of the wheelchair once in a while. The rehabilitation gym was well set
up for the task of training patients with a multitude of disabilities. A set of parallel bars was the first thing to master.
Like a child learning to walk for the first time and holding
onto the coffee table for support, I let my arms take most of
the weight so as to tolerate the pain. Eventually week after
week as I gained strength and mobility, I was able to let go
of the bars. I was also retraining my brain to once again get
used to the extra weight on that side of my body, and even
stepping sideways and backwards had to be relearned and
programmed into my brain once again.
12
POETRY
Jerry Hauser
Ash
Even while I am cold with you up here,
I cannot believe that there shall be
no more rich laughter from your throat.
That we shall not again recline in the clover
and carry its scent into our dreams.
Is there no way that you will comprehend?
Is there nothing to renew? Must it be finally
expired on this evening of wet wind and no sun?
On this high rise above the water we stand
and watch the weeds lift on the waves
and wallow in the troughs.
I have finally lost the will to speak with you.
I feel my words are useless.
What could be said is heavy echo.
I feel my words are frivolous.
We are together for the moment but apart
and cannot find the linkages.
Does my silence injure you? It hovers
near me like a peering referee.
I have lost the urge to speak it out with you.
A candle gone down with holy days
and celebrations.
Ash of incense tablets
(once burned sweetly into speaking).
I reside within the metal burner.
Cold and finished.
13
FICTION
POETRY
p.s.
We have now transformed into a new department. My correspondence will now be dictated by my secretary from our
new department: Veteran Affairs.
is restricted
shed never
get anything
constructive done.
15
PERSONAL ESSAY
Stutter
Jake Wolff
17
18
Michael S. Morris
POETRY
Michael S. Morris
Michael S. Morris
19
FICTION
My wife . . . is gone.
Big surprise.
At the other end of the bar, a young man cleared his throat.
The bartender went to him and took his order. She had
her bread and butter on display, with a long, thin knife of
cleavage down the middle. He tipped her generously, as the
young men always did.
The rag went limp in her hand. Im sorry. But what does
this have to do with me?
20
His bony hand shot into his pants pocket and he pulled out a
crisp, sealed envelope with nothing written on it. He passed
it to the bartender. Will you take it now?
She held it up. I guess. What is it?
He cleared his throat, coal dust from an ancient mine. Your
inheritance.
My what?
But he only smiled, rose from his barstool, and shrugged
into his coat.
Thank you for taking it off my hands, he said.
Inside the envelope, hed placed the key to his safety deposit box down at First National Bank and a note explaining how to withdraw the childless sum of money he had
amassed.
On his way out into the frigid night, he thought of Emma.
Emma in braces.
Emma in glasses.
Emma in college.
Emma someday having children of her own.
Always wanted great-grandkids, the old man thought, smiling. Wonder if Ill be able to look down and see themif
well be able to see them. Wonder if that old story is true.
He walked home through the empty streets of Santa Cruz.
The fog was clearing. When he reached the rickety Victorian he shared with his wife, he loaded a single red shell into
his shotgun and went up the stairs to the master bedroom.
Bunny was there, staring through him. He took her by the
cold hand.
I dont know exactly where youve gone, he said, but
Im coming. And I think youll be proud of me, Bunny. I
think youll be real proud.
He climbed into bed with his wife.t
21
FICTION
The Piano
Caitlin Barasch
22
Nothing interesting anyway, he says,
tossing it at me. Starlet this, starlet
that.
You say that every time!
He grins and shrugs. How was
school?
Who cares? Its almost over.
Hey, that doesnt mean you shouldnt
care.
My mom waves her spoon at me.
Emma, can you set the table, please?
I nod and grab some forks and placemats and napkins and spread them
across the table. My dad busies himself
filling glasses of water. Silence has
settled and I dont make eye contact
with either of them. We sit and I inhale
the food as it melts in my mouth.
I am on my last bite, so very close and
so very full, when my mom turns to my
dad and says, Have you heard anything?
He shakes his head. No. I would have
told you.
Im worried. She puts down her fork.
Im really worried.
Honey, he was in his own house. Hes
probably still there.
About his mental state, Peter.
Hes probably just as crazy as he was
before, I say, and swallow a mushroom.
23
24
But I do remember
those days when Jim
was just a little quieter
than everyone else, a
little slower . . . but
a man who always had
something interesting and random to say
about the world.
25
26
CREATIVE NONFICTION
Eff. Ha. Ree. Stoh. Livia draws out each syllable in attempt to teach me how to say thank you in Greek. She
smiles kindly at the woman who owns the small shop were
standing in near the Modiano Fish Market in Thessaloniki.
We have stopped in here because my feet are killing me.
Already, a mean red blister has begun to form on the back
of my left heel. I hope this blister wont bug me the entire
month Im in Greece. The shop owner reminds me to zip up
my bag, motioning with her hands, and sends us on our way
with a pair of nude hidden sock liners in my hands.
27
There are four degrees of hearing loss: mild, moderate, severe, and profound.
28
Adjustments, called mapping, are an essential part of cochlear implant therapy. Trained audiologists use a computer
program to adjust the speech processor in order to improve
hearing.
There it is: the Blue Hole, also known as the Giola Lagoon.
I am surprised by how small but dazzling it is. Compared to
the shimmery deep blue water, the lagoon is green. Blue
Hole is a misleading name. Standing at its lowest point,
I can see its shapecircular but tilting up and up as the
rocks rise. It concaves downward into the water and I can
see rocks piled at the floor. It is like looking into a kaleidoscope.
It doesnt take long for me to want to jump in, my thrillseeker side beckoning to emerge as I watch other people
dive, cannonball, or slide in. Livia fiddles with her camera,
switching it to what she calls the sport mode, which will
capture photos of us jumping in. I look at Diana, grin evilly,
and beg her to jump with me. We make our ascent up the
flat terraced rocks to the midway point between the low end
touching the sea and the heart-dropping highest point. The
lagoon looks as if it was carved into the rocks. It is seducing to the eye. Dianas blue swimsuit shimmers in the hot
sun and I can almost feel the anxiety emanating from her
being, so I take her hand, make her take a deep yogic breath
with me, and jump. We slam into the water and it envelops
us entirely, cold spray everywhere. As usual, I have forgotten to plug my nose, and seawater clogs it and gets into my
eyes. We resurface, and I see our friends cheering, hands
waving in the air. It is like a silent film where excitement is
written only on faces and bodies. Diana and I smile giddily
and high-five.
As an undergraduate, I taught two classes of first-year students. Im sure most people doubted I would be able to hear
my students, but in my first year of teaching the seminar,
I did well and was asked to return the next fall. Instead of
having everything work against me, I adapted to my environment by being transparent about my deafness and by
arranging my students desks in a semi-circle so I could see
all their faces.
29
30
Kevin Heaton
Threshold
Cataracts draw milk cream
across his eyes, concealing lucid
saline pools seasoned with hindsight
and dream residue. They spillway
into bottomless furrows retracing
the errors of his life, irrigating hoary
stubble, and wrinkling the crumpled
leaves of an ancient scroll; one page
yet unscribed. Gnarled, arthritic
fingers unfurl musings long ago folded
into a pensive hope chest, and pin
them to a quickened heartbeat.
Iridescent rainbow beams knit kestrel
wings to shadow bones; piercing
a tattered veilrevealing the limpid
essence of immortality.
POETRY
Will Leadbeater
Will Leadbeater
31
FEATURED ART
ith permission to leave the grounds of the addiction treatment center where shed spent the
last five months in rehab, Debra Purcell took a
liberating walk down the sunny streets of Boynton Beach,
Florida, and ventured into a Walgreens store. With less
than $4 in her pocket she wandered the aisles looking for
something crafty and cheap. Poster paint caught her
eye. Fueled by boundless energy, she wanted to keep busy,
do something for others, and express some creativity. Poster
paint seemed perfect. Little did she know, that seemingly
insignificant purchase would have a huge impact on her
32
life. She dipped the brush in the pigment and began to paint
and paint and paint. She gave most of her early creations
away but kept a box with bold flowers and cheerful huesa
clear representation of her joyful spirit with no hint of the
dark place from where she emerged. She enjoyed giving
her creations to people and relished the smiles on their
faces. A friend would later declare, You are an artist. She
disagreed but he had planted a seed that would eventually
sprout. Surrounded by supportive people who cultivated
her growth and encouraged her creativity, eventually, she
started to believe.
Purcell grew up in Northeast Ohio and describes herself as
a sickly child who often had sores in her mouth, gastrointestinal issues, and headaches, among other seemingly unrelated symptoms. Examinations by physicians, and even a
mother gave her $250 and put her on a plane. In rehab she
says, I woke up each day with a bad attitude. My bed was
up against the wall. I put Post-its [with affirmations and
positive quotes] all over the wall, and even wrote on the
wall so that when I opened my eyes, I would see them. She
needed help and knew she couldnt fix the problem on her
own saying, I think it was Einstein who said something
like, The mind that creates the problem cant fix it. My
mind had taken me into a depression and by myself I was
not going to get out of it.
Once she had completed The Watersheds 90-day rehab
program she moved into one of their halfway houses and it
was there that apartment manager and friend, Sean Farley,
first declared that she was an artist. After eleven months of
sobriety, she was hired as the alumni coordinator at the center (offering continuing support to people who completed
the program). A coworker suggested she submit her work
for consideration in a recovery art show. She was hesitant
but submitted one painting and braced herself for rejection.
Instead, she received affirmation. They wanted to see more
of her work. Her paintings were displayed in the Freedom
from Bondage exhibit. It was her first show and she was
thrilled. The sprout of creativity had pushed its way through
adversity and began to bloom.
33
After returning to Ohio, one of the first paintings she completed was Lakewood Painted. Its a charming representation of the area she now calls home. The bright, cheerful
image depicts Lake Erie, homes, businesses, churches, and
even her own apartment building, showcasing the diversity
and vibrancy of the rich, close-knit community. The painting is one of her favorites and has won national and international awards.
Over time I have grown spiritually into my paintings.
When Im painting Im joyful, having a spiritual connection
with my higher power. The self-taught artist has a distinctive, detailed style infused with vivid color, palpable energy,
and usually a dash of whimsy. She uses acrylics on canvas,
incorporating line, shape, repetition, rhythm, and elements
of pointillism.
35
Debra Purcell
37
her painting Regatta Town included in Dutch-Argentine artist Lorena Kloosterboers book, Painting in Acrylics: The
Indispensable Guide. The textbook is used in many college art programs around the globe. She was surprised, and
initially somewhat skeptical regarding the validity of the
email, when Kloosterboer contacted her directly requesting
the inclusion of the image in her book. What an honor for
the self-taught artist to have her work appear among those
pages. The original painting of Regatta Town is now owned
by Ronald McDonald House of Cleveland.
Hyper as a child, she is an enthusiastic adult who tries not
to let her illness hold her back from engaging in life. She
says, I see color as the soul of the painting. The form is
the body that brings the soul to life. When Behcets drains
her energy and enthusiasm, painting seems to rejuvenate
her in the same way that the colors bring her paintings to
life. There are days when she struggles to lift her head off
the pillow but she has found it is essential to practice grati-
39
FICTION
The Leper
Olaf Kroneman
The mask covered the affected areas of her face. She didnt
want anybody to see the deformity, especially her children.
At one of her clinic visits, she told me her girls glimpsed
her face and cried. Since that time, she wore a mask.
Now she worked from home, only required to go to the office once a week. She wore the surgical mask, telling her
coworkers it was because the medications lowered her resistance to infection.
It had been over a year.
Allison had acquired a disease called sarcoidosis. The
disease causes a type of inflammation very similar to leprosy. Its rare in Caucasians, but fairly common in African
Americans. It usually attacks the lungs and responds to a
low dose of steroids. Patients with sarcoidosis usually make
a complete recovery.
Allisons case was different. Her disease was very aggressive and affected her kidneys. She required dialysis, but
with a large dose of steroids, she recovered and was able to
come off the kidney machine.
She was in remission now, except for the skin on her face.
Rarely, sarcoidosis attacks the skin.
Allison came in for her clinic visit. All her labs looked
good.
40
It is on paper, I said.
My wife cried.
Im Dr. Larco.
Thats me.
I dont like to be threatened.
Its not a threat. Its a courtesy.
Youre angry.
41
I have a heart.
Dont you want to see her? Get a good look at her face?
Its the same type of inflammation. It causes the same facial destruction, I said.
No, he shouted.
Im a doctor, I run this HMO. Im not Mother Teresa taking care of the lepers of India. Its a good thing Mother
Teresa didnt work for an HMO.
Listen, I said. My friend is a plastic surgeon. He goes all
over the world, fixing cleft palates of children in poor countries. He said he would do Allisons surgery for free. He
said its a simple procedure and he can restore her face.
You know, Dr. Larco, that the doctors fee is a fraction of
the cost. Its the hospital fee thats the problem. The hospital
wont do anything for free.
But theyre a not-for-profit hospital serving the greater
good.
He laughed, Youre an idealist.
No, I said. Im a doctor taking care of his patient, like
you used to be. Im going to drop the dime on you.
What do you mean, drop the dime? He was breathing
faster into the phone.
42
POETRY
e. smith sleigh
Darren C. Demaree
Darren C. Demaree
predacious wind
the rumble of thunder
can be heard
out there on the horizon
that changes
from gray to grayer
a fall wind blows
across the landscape
across time
in my window
across my table
a thieving cold tempest
shakes the trees
and deprives them
of their leaves
and me of the green
my senses depend upon
this gusty rumble brings
a winter wind to my gate
bare trees to my eyes
and a chill to this house
that penetrates
way down to the bone
it bares skin and soul
and leaves you to mull
the death that marauds
through winter
reverberating
43
POETRY
Goldi-lock-less
Im no stranger
to this phenomenon
of shedding
parts of me
for the benefit of the disease.
In fact it all began
with lost hair
in the sink.
Even before the diagnosis
I knew
something was wrong
but I didnt want to be right.
Then came
the first medication
and more missing strands.
At age 27 I was losing:
my hair
my vibrance
my strength,
like Samson.
And now my drain is again
draining me,
littered with strands
that refuse to stay locked
in place.
They want
Out.
And who can blame them?
44
Nancy Scott
Find Me a Box
Kurt is capable of living in the community
and taking care of an apartment,
the mental health worker assured me.
Nine months later, Kurts fingernails
are bitten to the quick. Hed punched holes
in the bedroom wall, smashed windows,
burned holes in the carpet with cigarettes,
and tried to strangle his fianc, who left him.
Are you taking your meds? I ask.
None of your business, Kurt says.
Then he says, No, they make me crazy.
Have you seen your worker lately?
when he says he wants to die.
No, he replies, theyre all crazy.
Your landlord doesnt want to renew the lease,
I tell him gingerly, not wanting to disrupt
his frenetic pacing for fear he might get violent.
Never mind, Kurt says. Nobody cares.
Just find me a box, a big one, and Ill live there.
Instead I found him a shiny new apartment.
Back on his meds, he charmed the landlord.
Nancy Scott
45
PERSONAL ESSAY
I Am Different and It
Must Be Duly Noted
Peter L. Pingerelli
46
that I am different:
Peter is lame.
Peter is crippled.
Peter is handicapped.
Peter is disabled.
Peter is wheelchair-bound.
Peter is differently-abled.
Would any of these labels have changed the baristas thinking? Wasnt living with a disability already a life she could
never imagine? Maybe Ive too often been preoccupied
with how disability has caused me to be labeled.
In a general context, Adam Alter shares this concern in Why
Its Dangerous to Label People. Like so many human faculties, its adaptive and miraculous, but it also contributes to
some of the deepest problems that face our species. (Alter,
2010)
These tendencies to categorize and label will likely continue in perpetuity; one day I will no doubt hear: My DNA
chip profile, A1 is superior to your alpha I. We are now
discovering thousands of new genetic labels ready to categorize everyone. I fear themes explored in the movie
GATTACA will be sending us all into corners.
Consider that what was good in the past might turn out to
be bad today. In art, our perceptions of physical beauty
have changed with time (Haughton, 2004). Images of human physical perfection created by Renaissance artists
during the fourteenth through the seventeenth centuries are
unlikely to be found on the covers of todays fashion magazines. Yet both contemporary and Renaissance artists had a
similar goal: depict the idealized and unattainable physical
characteristics of humanness. Botticellis Venus, Rafaels
St. Catherine of Alexandria and Vanity Fairs Madonna are
each enhanced expressions of beauty. Perhaps, one day, an
artist will render the beauty of physical disability.
At least for now, disability remains a bad category of
humanness. Society prefers cures over acceptance. Sure,
Id welcome a cure for my disability, but living must go on
despite the current paradigms of what is beautiful or normal. For me, the notion of redirecting my personal action
plan based solely on the flurries of perceptions I encounter
is absurd. I find it paradoxical that society and culture continually rely upon constructs of human normality while our
very existence, as a species, would cease without an ability
to express variance. Didnt Charles Darwin tell us that adaptation is a path to survival?
When we see an individual who uses a wheelchair or has
some other visibly perceptible disability, it automatically
triggers us to conceptualize what it means to be a disabled
individual. The barista had to contemplate my disability
before deciding she couldnt imagine living like me. And, to
assist her, society has created its word list for disability.
Often the words are subtle, used to imply an individuals
lack of ability to perform a task at hand. Common words of
this lexicon include weak, unreliable, impractical, and incompatible. Not surprisingly, I often hear these words early
in a discussion when someone describes me as handicapped
or disabled.
In Galvins report, The Making of the Disabled Identity: A
Linguistic Analysis of Marginalization, she asserts:
. . .that the interaction between knowledge and
power which constitutes our identities, whether
they be positive or negative, is mediated by
language, that, indeed, because language is built
on the process of othering it constitutes a
naming process which defines identity through
difference. Our words are very powerful tools of
representation, which are accorded even more
potency when they are taken for granted as
transparent symbols of reality (Galvin, 2003).
48
I only needed to review my medical history to see an expanded word list describing my nature. Peter is severely
weakened by . . . suffers from . . . affected with . . . predisposed to . . . afflicted by . . . confined to . . . burdened
by . . . stricken by . . . and a victim of an unfortunate disease. Ive had my lesson on societys primary tool, language, and how it views my life. So now how do I proceed?
Ive discovered a partial solution by examining how to live
with the routine of just being me, by dispassionately allowing the world to experience my imperfection.
I found battling categorical thinking often involved a significant effort, occasionally at the expense of my personal
aspirations. So I began to accept that categorical thinking
was often an unalterable aspect of being human. I decided
my time was best invested in discovering and practicing my
personal abilities and skills, whether ordinary or extraordinary, in order to live my best life.
With this in mind, I began engaging in controversy when
it worked for me; right now I needed the barista to make
an acceptable cappuccino, not convince her to contemplate
what it would be like to live in a wheelchair. I would decide
which battles to fight in order to equalize myself.t
Works Cited:
Alter, A. (2010, May 17). Why Its Dangerous to Label
People. Retrieved June 15, 2012, from Psychology Today: http://www.psychologytoday.com/blog/alternativetruths/201005/why-its-dangerous-label-people
Galvin, R. (2003). The Making of the Disabled Identity: A
Linguistic Analysis of Marginalisation. Disability Studies
Quarterly, 23 (2), 149-178.
Haughton, N. (2004). Perceptions of beauty in Renaissance
art. Journal of Cosmetic Dermatology, 3, 229233.
Macrae, C. N., & Bodenhausen, G. V. (2001). Social cognition: Categorical person perception. British Journal of Psychology, 92, 239-255.
Scully, J. L. (2008). Disability bioethics: moral bodies,
moral difference (feminist constructs). Lanham, M.D.: Roman and Littlefield Publishers, Inc.
FICTION
Coincidence
Bob Johnston
I must have said that fifty times in those first two months.
Not that I really believed it, but thats what youre expected
to say at AA meetings. And the conditions of my probation
called for three meetings a week. What a comedown!
I was a partner in Briggs, McDonnell, and Price, the biggest
advertising agency west of New York. Not bad for a kid
named John Joseph McDonnell from the wrong side of the
tracks in Peoria. After high school, I put in a couple of years
at the U, majoring in tennis and girls. Then I headed for
Chicago and got a job with the Paul Briggs agency. Worked
my way up, brought in a couple of big accounts, made it as
a full partner before I was thirty.
One of the smartest moves I made along the way was
marrying Jena, a 1950 debutante with the face of a movie
star and a figure to match. And not incidentally, she had
inherited a sizable chunk of old money. The inheritance
included a hundred acres of prime real estate south of Hinsdale, next to the country club. We sold off most of it, kept
ten acres for ourselves and built our dream house. Four
thousand square feet, Olympic size pool, and a tennis court
with grass that was every bit as good as Wimbledons center
court. Not that I had much time to use it.
Five years and two kids later, Jena was up to her ears in big
charity projects, and I was the life of the party at the country club.
I came back to a Well done from Paul and the same old
feverish life at the agency. But on the next day I skipped my
Winos Club meeting and took the first train that stopped
in Hinsdale. Had a quick meal at a diner next to the station,
then drove over to an AA meeting in the east end of town.
It was nearly seven oclock when I walked into that church
basement, and the meeting room was already filled with
smoke and warm bodies. I recognized Andy, the country
club manager. Then Brenda, one of my neighbors, spotted
POETRY
Yuan Changming
Urban Portraits 3:
The Pigeon Feeder
No one knows
When the old man started to do this
But every evening he would pop up
From nowhere, coming
To the foot of a statue at the square
With a dusk-painted container
To feed the pigeons
Cooing and flapping around
Like wantons returning home for supper
Each time he would take extra care
Making sure each bird got its fair share
Whether it was warm or chilly
Windy or rainy until one day
He finally failed to appear
Then another day, a third . . .
Later, he was found stone dead
On his lonely bed, in a rented room
Definitely bigger than a cage
But containing no other furniture
Not even a desk, a chair
Only some bird food
Left on the window ledge
Two small paper boxes
Full of receipts from pawn shops
And a noteTo Whom It May Concern:
Please continue feeding the pigeons
51
FICTION
52
When Dr. Helen returned to work, I could see immediately that she was a different person. If Lenny had been
forty-two, then she must be somewhere in her late thirties.
She looked like an old woman. Huge bags under her eyes
sat like purple cushions, waiting to be smoothed down.
Between her eyes she seemed to sprout deep furrows overnight. She dressed only in black and wore a pin on her
green hospital gown with a tiny black ribbon attached. Fran
told me the Jews wore that as a symbol of loss.
One afternoon, I knocked on her door. I knew she was in
there but there was no answer. Cracking open the door a
little, I peeked inside. She saw me.
Eddie, she said startled. I was just taking my vitamins.
She held a dark-colored bottle of Raspberry Snapple in her
hand, popped the pills in her mouth, and leaned her head
back.
What is it, my dear? she asked.
Dont rightly know, I said. IWhat can I do to help you
get over your loss?
Did you hear Rabbi Greenwald? she asked. Nothing but
time and work will help. Im going to throw myself into
work. Ill give you more assignments, if you like.
I nodded and let myself out the door.
King. As the wind blew the white curtains like the sails on a
ship, I began to pray.
Dear Lord, I said. With your goodness and mercy, let me
and Mama learn how to help Dr. Helen.
The gospel music station played on the AM radio.
Mama, wheres your fancy paper? I asked.
Lord have mercy, she said, as she got painfully up from
the sofa and went over to the desk in the living room that
held color photos to bursting on top and reached inside the
top drawer.
56
PERSONAL ESSAY
Wheelin
Glenda Barrett
57
POETRY
Julia C. Spring
Relativity
slow I am seen by
the slower as swift by the
swifter as speed bump
Julia C. Spring
Stigma
distinguishing mark
of social disgrace letting
all others feel whole
Fall
What the waxwing must have seen
was distance twinned, cumulonimbus
tethered to sky, not glass
the hit, the spin, the fall, the feathers
loosed.
In the privet, songbirds gorge
on berries. You inure yourself
to clashing trills, to the living losing
focus,
tape yellow ribbon
to the glass, gather the fallen
bird. I watch you stroke its ivory belly
as if it were your child, watch
what you cannot withhold.
Previously published in Suisun Valley Review,
Issue 25, #1, Spring 2008.
58
PERSONAL ESSAY
As everyone around me formed identities as nurses, executives, lawyers, or therapists of various kinds, I remained
stuck with the identity of the sick girl with moments
where I could play the role of helper, confidant, and maybe
babysitterbut that was a rarity because most of my friends
feared Id faint and drop their child. The perceptions of myself and how others saw me and my place in the world became so warped, muddled, and such a polarity of extremes
that I often couldnt figure out if I was a burden who should
quit fighting so hard to be here or a person who has an essential place and role to those who count on me.
A reconciliation of my identity became clear to me during a
serious hospitalization after my heart went into ventricular
tachycardia (a.k.a. V-tacha potentially life-threatening
heart arrhythmia). Although the V-tach had subsided without going into cardiac arrest, my heart rate was still very
fast and it was just a matter of time before another bout
would ensue from the fatigue of continuously being tachycardic. My healthcare team quickly secluded me from any
stimulation or stress. There was talk of putting me under
sedation, but I was fighting pneumonia and my lung muscles, already weakened from my disease, could not handle
the sedation. I decided to meditate in an attempt to control
those wild beats. A big sign was put up on my door for any
visitor to check in with my nurse and not to enter my room
without his permission, so I was surprised when I heard a
knock on my door.
59
A woman carrying a flute gently entered my room explaining that the staff had asked her to come see me. She told me
she wanted to give me a private concert, but if for any reason I did not want her to, or wanted her to stop, she would
not be hurt in any way. She just loved to play the flute.
I had heard her play at the beginning of my hospitalization,
and had wanted her to play for me then, but my nurse, at
the time, told me she visited the terminal patients to give
them a private concert and then couldnt get to everyone
else. I thought I would only ever hear her at a distance,
but, now, here she was. This was a silent confirmation
of the unspoken feelings that many nurses and doctors
brought in each time they entered my room. There seemed
to be a growing certainty that I wasnt going to make it. I
remember feeling a moment of relief that somehow these
unspoken words were being acknowledged in some way.
My feeling that I needed to prepare for the possibility of not
living much longer was not needless worry, but a very real
possibility that needed to be addressed. Now, this woman
was here, given a role nobody else wanted to play: to actually acknowledge the unspeakable with her music.
For me, it was a concert of surrender. Each note played
revealed the truth of my situation: the doctors didnt know
how to heal me. All that could be done had been done, and
now it was a mystery to all if healing would or wouldnt
occur inside me. It was not up to me or the doctors if I lived
or died. There was some greater force that would make the
call, so I closed my eyes, and silently surrendered to a will I
could not know or understand. I knew then that I was ready
to take the next step. I was free from all obligations. I didnt
even have to stay awake for a concert being given for just
me, or to say thank you for the gift. This simple allowance
to go against all social customs helped me to relinquish my
struggle to figure out who I was and what I was supposed
to do. I laid there stripped of any role or identity, feeling a
sense of freedom that I never knew before.
It was only within this freedom that I could feel an awareness that I was simply experiencing a unique set of circumstances beneath all the socially constructed identities. I was
the only one with my exact experience in life and this, in
60
POETRY
Sheryl L. Nelms
Sheryl L. Nelms
Parkinsons
No definite
test
for
it
swoop
in
the neurologist
says
low
just walk
the straight
line
answer
the nurses
questions
Who is the president
what county
are we in
remember
apple
table
penny
spell world
backwards
and meet
dementia
head
on
61
PERSONAL ESSAY
Learning to Embrace
New Possibilities
Linda S. Slusser
62
POETRY
laugh by spinning down the hallway for the evening cookies. Sonnet still demanded our usual schedule of events and
treats, ignoring my new paraphernalia, and slept with me on
her two-thirds of the bed.
With basic coping skills under control, I still grieved over
pleasures I had lost. No longer could Sonnet and I do
therapy visits; I missed the hospital patients and the first
graders reading to my furry friend. No longer could I run
the obstacle courses to train Sonnet for agility trials, and I
missed my fellow dog enthusiasts. No longer could I easily
leave the house for long periods of time. I missed shopping
for gifts and taking courses at a local college on topics like
illuminated manuscripts or the novels of William Faulkner.
No longer could I enjoy food at home or in a social setting.
Or could I? Different possibilities began to present themselves, and my attitude brightened.
The Gloriosas
Huddling close
like a group of old friends,
they lift
questioning, golden faces
to the bright, fall sunshine;
then suddenly shake
with the onslaught
of a strong breeze,
twisting the graceful petals
into grotesque peaks.
Yuan Changming
63
POETRY
Sean J. Mahoney
Marketable Phenomena
It is rude of you not to declare yourself in grandiose fashion.
We, you and I, fail in communicating but not in embracing.
Intertwined we are. Spooky caduceus. Release me. Release
my satisfactory breath. Breathe in as you release that breath.
That blissful sigh of accomplishment, right? I give you that.
That breath of astonishment and struggle? You bestow that
upon me. For all our misunderstandings I have never denied
your superstar status; how spectacular you are lobe by lobe.
When I see you refracted through my pupil, spread on fibrous
blankets, resting yourself fitfully after the brain pillage, I am
convinced that perhaps, over time, we can negotiate territory.
You eat my cereals; my brown rice and kale, minced ginger,
strawberries and grapes as if you needed garnish for my salad
which is consumed with unexpressed purpose. And blatantly.
Why dont you toss it instead?
Use my Kiss my Face keep prey pretty on the outside. Use
my angled toothbrush. Sleep through me. Smell what I do
and dont smell. Though I doubt we share the same waste
management systems. Where do you toss the used up bits
of me? The dry and desiccated, the leftovers do you have
Ziplocs? A freezer? Do you have a preference for heated
meals or room temperature snacks? If you had a neck, fuck
if you had form even, I would screw your head off and void.
64
Mike Traber
Pendulum
I
13 pebbles or
14
pebbles in a drawer
in a knobless desk
a desk that stays
when the renter leaves
II
Pebbles from the summer
following pallid months
in pallid rooms
in a concrete hospital
towering along a river
while high school goes on
Stones from the summer
after radiation therapy
the flash that silhouetted
Hiroshima and Nagasaki
is the whirlwind
that may blow life on
Rocks from the summer
following home instruction
one instructor teaching
science without doing
math without figuring
English without reading
III
Damp, dirty heat
began the summer
before leaving the sweltering city
driven west of the border
of New Jersey and New York
two roads make four corners
Four corners make a hamlet
two lanes become one
stopping at a highland hotel
65
BIOGRAPHICAL NOTES
Shirley Adelman is a former high school and college teacher. She has been published in academic, literary, and medical humanities journals in the United States, Canada, South
Africa, and Israel. Most recently her poetry appeared in Canadian Woman Studies, Blue Collar Review, and Cell2Soul.
Adelman says poetry sustained her following treatment for
breast cancer and a concussive accident.
Caitlin Barasch is a literary assistant at Selected Shorts
which can be heard on Public Radio International (PRI).
Her fiction has been published in Hobart (December 2014),
Word Riot (March 2013), Grasslimb (July 2015), and a
book review in DIAGRAM (December 2015). The mental
illness of one of her family members has led her to consider
the world through that perspective.
Glenda Barretts poetry and essays are widely published
and her artwork is online at Fine Art America. Her poetry
chapbook, When the Sap Rises, was published by Finishing
Line Press in 2008, and one of her paintings was published
in Bread and Molasses Magazine. Her disability is a form
of muscular dystrophy.
Lynsie Mae Buteyn started Bridges to Patient Empowerment, a nonprofit that helps empower and inspire people
who are chronically ill and have disabilities. She writes for
that nonprofit and other organizations/publications that help
convey the experience of having a disability. She has congenital dysautonomia, an autoimmune disorder.
Yuan Changming, a nine-time Pushcart nominee and author of seven chapbooks, grew up in rural China. Now living in Vancouver, Canada, he is a translator and also coedits
Poetry Pacific. His poems have appeared in journals and
anthologies in thirty-eight countries, including Best Canadian Poetry, BestNewPoemsOnline, and Threepenny Review.
He has received two awards from Sons of Camus Writers
International Journal.
Darren C. Demarees poems have appeared in numerous
publications, including the South Dakota Review, Meridian,
The Louisville Review, Diagram, and The Colorado Review.
Collections include As We Refer to Our Bodies (8th House
Publishing, 2013), Temporary Champions (Main Street
Rag, 2014), The Pony Governor (After the Pause Press,
2015), and Not For Art Nor Prayer (8th House Publishing,
2015). He is the managing editor of Best of the Net.
Ruth Z. Deming, winner of a Leeway Grant for Creative
Nonfiction, writes poetry and prose from her home in Willow Grove, Pennsylvania. Her work has appeared in publications such as Creative Nonfiction, Haggard and Halloo,
and Hektoen International. A psychotherapist and mental
health advocate, she runs New Directions Support Group
for those affected by depression and bipolar disorder.
66
Julia C. Spring is a semi-retired social worker and lawyer who practiced health/mental health law and has taught
many students in both professions. Her work has appeared
in Blood and Thunder, Musings on the Art of Medicine
(2011), Hospital Drive (Winter 2013), Smoky Blue Arts and
Literary Magazine (Summer 2015), and The Journal of
Healing (Spring-Summer 2015). Spring sustained a spinal
cord injury with initial paraplegia in 1966 and now uses
crutches. Spring says, How people survive and thrive in
our world is the dominant theme of my writing.
Mike Traber is retired. His poems have appeared in several publications, including Passager (2002) and Ariel XX
(2001). Trabers disability is impaired balance and he is also
legally blind. He says I am a native New Yorker of German descent, who tries to keep his mouth shut and his ears
open to other people, their speech, and their cultures.
Mary Ellen Talley is a speech and language pathologist in
Seattle, Washington public schools. She says, My students
constantly challenge, entertain, and educate me as well as
inspiring much of my poetry. Her poems have been published in Spillway (Winter 2014), Floating Bridge Review
(2014), and Main Street Rag (Summer 2012). Talley also
contributed to the anthology Raising Lily Ledbetter: Women
Poets Occupy the Workspace (Lost Horse Press, 2015).
Leah Vitello is a graduate instructional assistant at the
University of South Carolina. Her work has appeared in
Words Dance and The James Dickey Review. She occasionally posts on her blog Home and the Wanderer. Vitello is
profoundly deaf and has cochlear implants. My deafness
is certainly a big part of me, so it naturally appears, though
subtly, in my writing.
Liz Whiteacre teaches writing at the University of Indianapolis. She authored Hit the Ground and coedited the
anthology Monday Coffee & Other Stories of Mothering
Children with Special Needs. Her poems have appeared in
Wordgathering, Disability Studies Quarterly, The Healing
Muse, and Breath and Shadow. She is a recipient of the
2015 Excellence in Teaching Award from Ball State University as well as receiving a Pushcart Prize nomination in
2011 and the Inglis House Award Poetry Award in 2010.
Gail Willmott has been a staff member with Kaleidoscope
since 1982 and became editor-in-chief in July, 2003. She
received both her bachelor and master degrees from the
University of Illinois. This is a career I have loved for
thirty-four years, despite the occasional chaos that ensues,
getting to know our contributors as well as working with
very accomplished and supportive colleagues.
68