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Number 68




"Fine" by Alison Stine "Dancing Without Music" by Kobbie Alamo "That Girl in the Wheelchair" by Rebecca Molloy


EXploRiNG THe EXpeRieNce oF DisaBiliTY THRoUGH LiTeRaTURe aNd THe FiNe ARTs



Some Common Misperceptions of Disability
Gail Willmott 4

The Minyan
Joel R. Burcat


The Rules of the Game
Sharon Peerless


Alison Stine 6

Getting Coffee
Laura McKittrick


A Second Chance
Sandy Palmer 32

My Mighty Friend

Kimberly Sue McLaughlin


Artistic Melange
Sandy Palmer 46

Dining Out Scenarios
Peter L. Pingerelli


Having an Impact
Kurt A. Hoffman


Dancing Without Music
Kobbie Alamo 20

The Caregiver
Michael Smith 11

That Girl in the Wheelchair
Rebecca Molloy



Strange Behavior
First Responses Jennie Chapman Linthorst

18 19

Reboot The Slur
C.R. Reardon

24 59

Kevin White, Inside Out Square, 2010, computer art, 8” x 10”

At St. Coletta’s School
Jerry Hauser


Hors d’oeurve
Lenore M. Montanaro


Silence in the Storm

A daughter’s poem to her Dad who has aphasia


Breanna L. Beauchamp

Greg Moglia


It Was Like This:

after the poem of the same name by Jane Hirshfield 50 51 Barbara Crooker


Locus Mentis Everyday Miracle
MaryAnn L. Miller

matthew lyndon wells


The Lamb
Mark J. Havlik




Curbing My Fear
For Ginny John Thomas Clark

Stuart at Work Michael Northen 2

(After Sherwood Anderson)

55 55


PUBLISHER Gary M. Knuth, President/CEO United Disability Services EDITOR-IN-CHIEF Gail Willmott, M.Ed. MANAGING EDITOR Lisa Armstrong ART COORDINATOR Sandy Palmer EDITORIAL ASSISTANTS Lynne Came Veronica Duesenberry Paul Gustely EDITOR-IN-CHIEF EMERITUS Darshan Perusek, Ph.D. HONORARY EDITOR Phyllis Boerner ART CONSULTANT Jennifer Wexler Director of Visual Arts VSA, Washington, D.C. MANUSCRIPT REVIEW PANEL Fiction Review Mark Decker, Ph.D. Bloomsburg University Bloomsburg, Pennsylvania Poetry Review Sandra J. Lindow University of Wisconsin-Stout Menomonie, Wisconsin

KALEIDOSCOPE (ISSN 2329-5775) is published online semiannually. Copyright © 2014 Kaleidoscope Press United Disability Services, 701 S. Main St., Akron, OH 44311-1019 (330) 762-9755 Phone (330) 762-0912 Fax email: Kaleidoscope retains non-exclusive world rights to published works for purposes of reprinting and/or electronic distribution. All other rights return to the writer/artist upon publication. We request credit for publication as follows: Previously published by KALEIDOSCOPE: Exploring the Experience of Disability through Literature and the Fine Arts, 701 South Main St., Akron, OH 44311-1019 Indexed in Humanities International Complete and the MLA International Bibliography non-Master List. Listed in International Directory of Little Magazines and Small Presses, Magazines for Libraries, and The Standard Periodical Directory. KALEIDOSCOPE is a member of the Council of Literary Magazines and Presses (CLMP). Submissions: Email or online submissions preferred. If submitting hard copy, send copies of originals with SASE. The editors do not assume responsibility for returning submissions without ample return postage. Address all correspondence to the editor-in-chief.

KALEIDOSCOPE, published since 1979, explores the experience of disability through literature and the fine arts. Fiction, painting, photography, pencil sketches, sculpture, poetry, nonfiction, book reviews, and theater are all featured in various issues. Unique to 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, and healthcare professionals, among others. The material chosen for KALEIDOSCOPE challenges and overcomes stereotypical, patronizing, and sentimental attitudes about disability.





eople with disabilities often remark that the perceptions of others about their disabilities have very little to do with the realities of their lives. Sometimes such assumptions are harder to deal with than living with the disability itself. I believe these inaccurate perceptions are due to a lack of knowledge and direct experience as well as a discomfort around those who are in some way different from the “norm.” Perhaps there is also an underlying, unconscious fear within those who are considered “normal” that their lives could suddenly be changed, forcing them to confront coping with a disability. One of the most common misperceptions of disability is that we are “helpless” and unable to articulate our own needs and desires. I would presume that nearly everyone with a disability has, in the course of conducting the business of everyday living, been faced with public encounters in which people speak past us to another person, leaving one with the feeling of being invisible. Here are a few examples from my own experience: 4

In a restaurant, the waitress directs this question to my companion—“What does she want to eat?” In a clothing store, the sales clerk asks my friend—“What size does she wear?” In a new doctor’s office, the receptionist says to my father (who was there only because he provided my transportation)—“Why is Gail here today? I need someone to answer questions for her in order to compile a chart.” When undergoing a medical procedure, made more difficult due to my spasticity, the doctor says—“If you can’t cooperate any better than that . . .” as if I was deliberately trying to make his life difficult. I think the people I understand least and have no patience with are doctors and other medical professionals. I believe they should know better. (In my younger days I would have verbally put a doctor in his place, if warranted.)

Years ago my father taught me, by example, how to handle most of these encounters. If a question was directed at him that he knew I was capable of answering, he would simply remain quiet and, after a few seconds of awkward silence, I would respond. For the waitress, or clerk, or doctor, etc., there was always a moment of surprise and confusion as they realized they should have been addressing me. Over the years, my dad and I had our act down pat. I also taught my friends to respond by saying—“ask her” or to remain silent and allow me to do the talking. Peter Pingerelli’s essay, “Dining Out Scenarios,” presents several similar situations and details how he has chosen to react over the years. You will see that he makes a distinction between simple ignorance and outright prejudice. My own strategy for confronting such common misconceptions revolves around whether or not an encounter is of a fleeting nature in which I am unlikely to interact with an individual again, or whether the person is some-

one I will likely encounter often or with whom I may possibly develop a close relationship over time. If the latter is the case, then I feel it is important to make an effort to correct any apparent misperceptions regarding my competence and abilities. It seems to me that we do have to learn how and when to pick our battles. Over the years I have learned to save energy and emotion by deciding not to die on every hill. If we think in terms of a spectrum of common reactions to the experience of disability, on one end there would be those that embody the view of helplessness or hopelessness and on the other end are those reactions which characterize individuals with disabilities as heroic, extraordinary, or inspirational. Within the disability community people often distance themselves from any notion of being perceived as special or as any kind of role model of presumed heroism. (After all we are just living our lives as best we can along with everyone else on the planet.)

By the time I reached adolescence, if anyone approached me espousing any of those “super special” sentiments, I would immediately feel my ire rising. I vehemently refused to accept or even acknowledge those kinds of comments. This reaction to such expressions continued well into my thirties. However, as I have journeyed into the second half of my life, a change has slowly occurred within me. It is not that I seek such accolades or believe them about myself. It is rather that now I quietly acknowledge the possibility I might have a positive impact on someone close to me or perhaps even a stranger simply by living my ordinary life. Kurt Hoffman’s concise essay, “Having an Impact,” makes this important point in an extremely powerful way. Additionally, a recent contributor to Kaleidoscope remarked: “In the disability community, we do not want to be seen as inspirational, but I seek to inspire and expect to be inspired.”

This issue of Kaleidoscope also includes strong pieces of fiction which reveal ways in which people with disabilities are sometimes perceived and treated even within their own families. There is also a selection of poetry and beautiful art by very talented artists. I hope you enjoy the selections you will find here.t

Gail Willmott





sat on the little plastic chair in the examining room, being studied by a woman in duck scrubs. I had just made her life more complicated. She and her pencil were struggling with the Personal History section of my forms; under Neonatal Defects, she’d had to circle yes. “I was born with a hearing loss,” I heard my voice say, hollow-sounding in the examining room. “I’m partially deaf.” I knew something was wrong. It wasn’t the baby; what we could tell of the baby, the kidney bean shaped smudge on the ultrasound they would give me; the technician, who looked to be no more than high school-age, printing out a sheet of three perforated images, like commemorative poses from a photo booth: baby smudge upside down, baby smudge right side up, baby smudge sticking out its tongue for all I knew. But it wasn’t the baby. It was me. Something was wrong with me.

At least it was according to the prenatal nurse. I could tell by the way she paused with her pencil. I had given her a urine sample—standard every visit, to test for drugs. They had taken blood, and now, there was this form. Had I ever been pregnant before? No. How many miscarriages? None. Did I smoke? No. Drink alcohol? Not really. Was this a planned pregnancy? Sort of. I’d stopped taking birth control pills a few months before, and I remember, that first month, I was weirdly disappointed. I was sad to tell my husband; there was another month to wait. But

the next month, after the strange fever, after the headaches, after my husband and I had decided to skip an out-ofstate trip, after we had gone to the drugstore in the college town where we live and, to the horror of the undergraduate working the counter who usually handled orders of cigarettes and razors and gum, bought a pregnancy test, after it was positive, my first response—I’m so sorry, baby—was Oh no. I crept out of the bathroom. My husband had fallen asleep watching TV. It was April, already dark by dinner. My husband woke up just as I stood in the doorway with the stick in my hand. His eyes opened, focused, then widened. This was a terrible idea. A baby. Unprotected sex. Sex in general. I wanted to have a baby, I did. I wanted to be a mother. I just didn’t think it would happen so quickly. Nearly everyone I knew had struggled to conceive a child. Weren’t we supposed to struggle? Wasn’t this supposed to take months, if not years, years in which I could finish my degree, get a good job, make some money and do everything else I ever wanted to do first? “This is not a good time,” I said. “It’s never a good time for a woman to


have a baby,” the chair of the English department where I studied would say to me, and she was right. In subsequent weeks, when I would change doctors not once, but twice, in the hope of finding someone who wasn’t terrified by the prospect of a disabled pregnant woman, I would learn to keep going. To give them all the information before they had asked for it, before they’d have a chance to panic, circle things, shuffle forms. I’d learn to say: “There’s no family history of deafness or any other disability. I’m the only person in my family to have a disability—none before me, none after me. It doesn’t cause me much of a problem. I’m fine, just fine,” I’d say helpfully, as an afterthought. Still, they panicked, circled things, shuffled forms. “Did this show up in your mother’s ultrasound?” the doctor at the first practice asked me. “I don’t know,” I said. “I don’t think so.” The truth was, I found out later, my mother hadn’t even had an ultrasound. It was 1978. No one had ultrasounds. The truth was, how would a hearing loss show up in an ultrasound? Still, they looked for it, or tried to—to look for something. After the first ultrasound at nine weeks to confirm the pregnancy, I had a second at nineteen to make sure nothing was wrong, and a third at twenty-four weeks to re-confirm nothing was wrong. I really didn’t want to do the third one.

I had been reading up, doing research— never a good sign in a patient, I could tell from the doctor’s tight lips. This wasn’t just any ultrasound the doctor wanted me and the baby smudge to get. Since I’d been indentified as disabled, this ultrasound was the high-powered, extra intense, multiple hour Level 2 ultrasound. Shortly before giving birth, in a flurry of last minute, readying activities that included grocery shopping, cleaning the house, organizing the pantry and every single closet, I had gotten the car washed. When I rolled up to the auto service center, an employee gave me a menu through the open window: Regular Wash, High Powered Wash (that included rims and undercarriage), or Super Powered Wash (I couldn’t afford this one, so I didn’t read on for the specifics). The menu was laminated. This was the Super Powered Wash of ultrasounds. It was not 3-D, the slightly sketchy technology that allows one to see her baby from all three sides, it was 4-D, which I didn’t think was possible in the laws of space and time. It was so detailed, a special technician was needed to read it, to interpret the map of my squirming insides. I would have to have it done in Columbus, the big city, two hours away, at the university hospital. I made the appointment, then worried about it. It was only my hearing loss that prompted the doctor to order the Super Powered Wash of ultrasounds. I had no other risk factors. I have never smoked or done drugs. I was under thirty-five, exercised sometimes, and was taking vitamins. There was no bleeding, no cramping. I had low blood pressure, lots of throwing up and headaches and

nausea in the first few weeks, which are actually good signs (the sicker the mother, the stronger the baby). And this baby, this smudge I was starting more and more to think of as an actual baby, was strong. I knew it. That first day in the doctor’s office, I was also diagnosed with an ovarian tumor, a fibroid tumor at the top of my uterus. It was non-cancerous, but it lowered my chances of ever getting pregnant to thirty percent. This pregnancy, therefore, was a bit of a surprise. The doctor asked me if I had struggled to conceive, and frowned a bit when I said no. She explained, however, patiently sighing, that I would probably miscarry. I didn’t. I switched doctors. I found myself telling the story of my body again and again—not only telling, but reassuring, sticking up for the solidness of my own form. I smiled, tried to keep my voice casual. Really doesn’t cause me a problem. I speak just fine. Most troubling, I had to justify my body to every single medical professional I saw during my pregnancy. I had to answer the incredibly personal question: why hadn’t I had my hearing fixed? After all, hearing losses can be fixed, right? There are cochlear implants now. Don’t they mean, like blind Gordy with his seeing visor in Star Trek, with the right technology attached to their heads, the deaf can now hear? Not exactly. 7

For one thing, every hearing loss is different, as every body is different. In my particular case, it’s extremely complex: at least three separate surgeries, performed by only a few specialized surgeons, none of whom live in a state anywhere near me. One of the surgeries would involve drilling a hole in my head. Recovery time could take a year or longer. Insurance may or may not pay for this (the last time I checked, they wouldn’t). The surgeries may not even work. One specialist I consulted years ago advised against it. I would have no idea where the sound was coming from, he said. It would be confusing and disorienting. It would make me sick.

it would stick out so much, eventually popping all the way inside out like the thermometer on a done turkey, it showed through my shirts, alien, odd. My students’ eyes drifted down. I slapped a band-aid over it, pushing it in, smoothing the front of my shirt.

old railroad tracks that crisscrossed the state like veins, flatten the land, and pave it for two wheels, strollers, and bikes, I avoided the paths, fearful of the cyclists who would buzz me, shouting out shortly before they passed so close I could feel the brush on my shoulder, “On your left!” But I couldn’t hear them coming, couldn’t hear them move up behind me on my left side, my deaf side.

* * *
When I first found out I was pregnant, I cried and worried and yelled. I felt guilty. I felt irresponsible. It was not only that I felt I wasn’t ready, that I felt too young and selfish and overcommitted, it was that I felt aberrant. I was dangerous. I was imperfect. I was marred. Who was I to think I should try to have a child? What if my child ended up like me? How could I do this to someone I’d never even met, someone innocent, someone who didn’t yet know what it was like? Because I knew. I knew that being deaf had a huge impact on me, especially when I was young. At school, there were kids, kids who were cruel, kids who were kids, who called me freak. It got better as an adult, but not always. I was usually straining at dinner parties and job interviews, being thought of as absent-minded simply because I missed sentences. My first boyfriend’s mother thought I was flighty. My eventual good friend thought I was always mad at her in college because she sat on my left side—my deaf side—in class, and I never answered her, missing everything she whispered during lectures. And what did I miss? The inner ear is also responsible for balance and so, despite years of ballet training, I was always crashing into things, the skin on my left side bruised as fruit. I broke toes and a foot. I dislocated my knee. When the town councils of Ohio voted to tear up the

* * *
How could I bring that down upon a baby? Growing up, I didn’t know any deaf children. By adolescence, I had met only two. I first met Lauren when the principal made an announcement about her lost purse over the intercom. She had left it in the girls’ first floor bathroom, then returned to find it gone. It was white leather with fringe—that I remember him saying clearly over the speaker as I sat in homeroom. Why do I remember? Because it wasn’t the purse that mattered, he stressed repeatedly. It wasn’t the little money. It was the hearing aid inside. The principal was outing her as deaf. He didn’t say it was Lauren’s, but somehow, everyone knew. I knew. Finally, I was bold enough to say hello to her. Later that year, she called me aside during a prep rally, and told me beside the bleachers that pulled out of the wall like beehives that Alex, her ex-boyfriend, did like me, but he had asked Rachel to go with him first. Later, we bonded in chemistry class, struggling over our unknowns. Much later— now—we are still friends. I’m not sure when I told her about me, about my hearing loss, but it became one of the threads that bound us.

How could I do this to someone I’d never even met, someone innocent, someone who didn’t yet know what it was like?

More importantly, I’m happy with the hearing I do have. I’m happy with my body, imperfect though it may be. I’m happy the way I am. But explaining this to doctors who were not hearing specialists, coming out as disabled to them—disabled and pregnant—made me feel ostracized and alien. Pregnancy was alienating enough all on its own. Strangers felt they could touch my body, comment on my weight, how many times I must be going to the bathroom. I was watching my body change daily into something I didn’t know. One morning, I realized I no longer recognized my belly button. It was just . . . different, a little lopsided, a little doughy, a little poking out more. Soon


Another girl, I met at the arts academy where I took ballet and mopped the floors instead of paying tuition. I don’t even remember her name, only that she was a redhead, deaf in her right ear, as I was in my left. When I told her about me—it may have been one of the first times I told anyone about me—she joked that between the two of us, we had perfect hearing. But I wasn’t like her, or Lauren. I didn’t wear a hearing aid; my condition can’t be helped by one. My deafness was even more secret—even a flick of hair wouldn’t give it away.

what I miss, how, in having to fill in the absences, the silences of sentences, I’ve learned to make my own music, my own language. I waited for the woman to jump in. I waited for a me too, or some kind of contribution of her own experience. We were the only deaf people there, as far as I knew. I waited to hear from her.

By all other accounts—every single blood draw, blood pressure number, urine sample, temperature, Doppler reading, tissue sample, pelvic exam, and ultrasound—I was having a remarkably healthy pregnancy. The fibroid tumor had shrunk, all but disappeared. I was gaining weight, the right amount. My blood sugar was fine. I felt physically and emotionally great. It was just my deafness; that was all. But deafness is not catchy. It’s often not hereditary. On the contrary, over ninety percent of deaf children are born to hearing parents, myself included. I didn’t tell the doctor this. I protested—but in the end, I clammed up. Like so many women bullied in prenatal care, I gave in. I compromised and agreed to a regular, anatomy ultrasound—the mere High Powered Wash of ultrasounds—at the local clinic. It would end up taking an hour. It would end up making me sick. I lay on my stomach in the dark room, my shirt pulled up. Beside me on the monitor, black and white images undulated and swirled, just inside my peripheral vision. I felt nauseous, light-headed, swooning. I took breaks twice, going into the bathroom to wash my beaded face. “This happens all the time,” the technician said cheerfully when I returned from the bathroom the second time, wiping my mouth with a rough square of tissue. “Women always get sick from this.” “Has anyone thought to ask why?” my husband said. The technician didn’t know. She angled the monitor away from us when the sex came into view—we were opting not to find out, to be surprised—and laughed when the baby did a summersault, saying, “You’ve got a wild one on your hands. A real active one.”

* * *
A few years ago, I gave a talk at a university a few hours south of where I lived, and the woman who invited me had a hearing loss. She confessed this to me, surprised, when I told her about my own. By then—by now—I am casual about it; I am open right away with strangers. It is easier that way, to have the reason ready if I miss things, to let them know at the start. “I’m deaf on my left side. Can you stay on my right?” I asked her as we trudged up the hill to the university, our breath fogging in the cold. She looked shocked, stopped, and told me about herself. I noticed only then the very pale, almost invisible hearing aid tubes coming out of both ears. Her white-blonde hair, which she kept very long and down, hid them completely. It was a brisk February morning. I was just weeks from getting pregnant. Later that day, after the talk, we sat at the celebratory bar for the perfunctory drink with students and professors. I told everyone about my hearing loss as we walked in and stared at the table, trying to figure out seating arrangements. Later, it came up again when we talked about music in language. I talked about

My deafness was even more secret—even a flick of hair wouldn’t give it away.

But she kept silent: a tight, obvious silence, her arms folded, not looking at me. Finally, I realized she was hiding, hiding her deafness, hiding it from them. The rest of the department—her friends, her teachers—didn’t know about her hearing. I understood. I took a drink, looked away from her, swallowed and said nothing.

* * *
Walking into the ultrasound, I was scared. I had opted out of the Super Powered Wash, canceling the appointment in Columbus. But at my next checkup, the doctor had come in screaming. No handshake, no hello. Her first words to me as she marched through the doorway, white coat flapping like a lost cause, were: “What the hell do you think you’re doing? You’re acting completely irresponsibly.” I had to have the ultrasound, she said. “Something could seriously be wrong.” Her evidence for that, for something seriously wrong? My hearing loss.


We all held our breath and gasped a little as the image of the profile appeared, flicking into view: rosebud lips, small upturned nose. It had to be a girl, my husband would tell me later he had thought when he saw the profile. The baby was so lovely. Finally, it was done. No one called with news from the doctor’s office. In a few weeks, when I had my regular appointment, I asked about the ultrasound. What had they seen, and what were we going to do about it? I understood checking for a heart defect, problems with internal organs that might need to be treated with surgery right after the baby was born (or even before). But the technician had spent ages trying to get a clear shot of the mouth; the baby kept holding his or her fists up, covering the

mouth, like a boxer. When I asked why, the technician said she needed to check for the non-life-threatening condition of cleft palate. Why would we need to know that, four whole months before the baby was born? Four months of worry, four months of guilt, four months of nothing we could do? Why, for that matter, would we need to know about a hearing loss? What if my own parents had found out about me before I was born? What would they have done? Having a hearing loss, being the physically imperfect person with a disability that I am, has enriched my life in many ways. It has made my life, made me into the person I am, given me greater empathy, caused me to have to slow down—to listen harder, to listen more

than I talk. Being deaf makes me respond to the world differently. To listen, I must slow the world down. I must wait. I wanted to wait and meet the baby on his or her own terms. I wanted to listen. I wanted to be all right with what would come. The doctor shrugged. “We found everything we needed to, and didn’t find anything we didn’t want to,” she said simply. Then she scheduled me for another ultrasound. Just to really make sure nothing was wrong. After that, I changed to midwives. My son was born on New Year’s Eve in the morning right before dawn: imperfect, himself and just fine.t




The Caregiver
Ironically, They sent a member Of the disenfranchised To place a sweet bouquet of flowers Upon my breakfast tray. Her hair of blackest black, She wears in cornrows like a crown, Her leather coat, Worn smooth in spots, Is very much of last year’s cut. She smiled at me, a smile So freely given, that I returned it Without pausing to consider How she might feel At such a liberty. Our fingers momentarily entwined, then parted, Freeing them to wave From ’round the corner Around that same corner The hospital was awakening. She will return, my precious caregiver, Bearing little gifts that make fears flee. She must now return to her own nest of fears. Is there a caregiver there To cast some petals in her path?





nticipation primes my senses. I’m ready to savor delicious cuisines and sociality. Occasionally, though, circumstances prevent me from completing a satisfying meal. I know the controversy that dining out sometimes brings, creating its incompatibilities with my appetite and companions. Should I dine out tonight? Shall I confront the crowd? In the end, I decide to dine out anyway.

carpeting, I catch the rest of myself before my head hits the ground. My biology and gravity are collaborating to embarrass me again. But in an instant my dad sweeps his hand under my arm and helps me to my feet. Everyone is watching. My little sister Dina is crying. Paul is always friendly to our family. He asks if I’m OK and brings a wonderful appetizer platter. We enjoy our meal. For the rest of the evening, I do not give much thought as to how the consequences of my disability affect my family. I only feel humiliation for myself. Later, I better understand that my family takes that fall with me.




It’s Sunday afternoon and my family arrives at Mom’s favorite Chinese restaurant on Gratoit Avenue. I really do not like the two cement steps leading into the Canton Inn. I grab the shaky banister to steady my climb. It’s an awkward ascent, but fried shrimp, almond chicken, and egg drop soup await. And, I’m sure no one will notice me outside of the restaurant. It’s 1972 and I’m about to start junior high. The days of attending a special school are behind me. My parents fought hard to open that mainstream doorway. The family is dining out to celebrate. The restaurant is crowded. Paul, the owner, leads us to our booth, but the walk from our Oldsmobile Cutlass up those stairs took more out of me than I bargained for. The muscles in my legs are tired, and I’m moving too fast while trying to avoid a waitress coming my way. As my knees smack the 12




Over the years, with various diagnoses, medicine and science have continued to pronounce the nuances of my biology, following me with an unrelenting obsession to categorize and limit my existence. As a youth, my naivety battled against these predestinations. I continuously sought to leave those notions behind. Whether it was images of my unusual gait, scooter or wheelchair, I felt the labels of “disabled,” “handicapped,” and “crippled” sticking to me. And, too often, I found society translated those labels to mean weak, passive, and unintelligent.

My disability had brought its unique brand of customization into my life. And, while dining out created its pleasures, at times, these joys were also tethered to emotional pain and hard lessons.

If strangers continued their attempts to make me feel different and retreat into a smaller place, I would need to work persistently to avoid those consequences.







After the football game ended, my high school friend and I made plans to meet at the neighborhood Taco Bell. As we walked into the fast food restaurant, people around us surely noticed a peculiarity with my gait. I asked Tom, “What do you want? I got it tonight.” A small group of our friends, Patricia, Janet and Suzie, joined us. Within moments, a middle-aged man approached the edge of our table. He stared at Tom. “You are sick, really sick, to let a crippled person buy your food.” Everyone’s gaze shifted towards our table. The man reached into his pocket and pulled out a handful of coins, showering our fast food feast. My anger and embarrassment surged as this man so readily lept from noticing I walked differently into his assumption that I was poor and had a miserable life. My unripe pre-frontal teenage cortex formulated the apt response. “Hey, asshole,” I yelled. “You’re a few bucks short.” He looked back in surprise as he walked out. This man believed he was protecting me. He saw biology stealing my walk, and Tom stealing my money. Perhaps society’s imprint of heartrending telethon images along with its tally boards and donation drumrolls were too deeply embedded for him to act differently. Throughout my life, I continued to encounter the stranger’s assumptions that disability is hopelessness and helplessness.

As I matured, my dining out experience began moving to new levels. I was a sophomore in college in 1980, and a recruiter visited Wayne State’s campus to interview disabled students for summer jobs with the Department of the Navy in Annapolis. The opportunity to serve as a civilian physical science aid was exciting. Gallaudet College in Washington DC became my summer residence.

Throughout my life, I continued to encounter the stranger’s assumptions that disability is hopelessness and helplessness.

I met someone on campus. We were a demure and attractive couple. She was the first person I dated who also used a wheelchair. One night, we dined at a restaurant in Lafayette Square, a short drive from Gallaudet’s campus. The outdoor seating section of the Italian bistro was cozy and romantic. The confines of the small café table seemed to concentrate our attentiveness and anticipation of intimacy. “Peter, you’ve impressed me with your choice,” my date said. Unexpectedly, the maître d’ who originally seated us returned and asked if we wished to move to a different table. At first, I hesitated to respond. My words needed careful planning.


“Why should we move? We just got our salads?” “A customer is uncomfortable with your situation,” he whispered in reply. “What situation?” He did not reply, but opened his arms as if to welcome us into his café.

quite “dedicated” enough to pursue a career in science or medicine. After my lectures, the student union cafeteria was a convenient stop for lunch. As I went through the lunch line, I usually carried my book bag on my scooter’s platform, and balanced my meal tray on its handlebar. Sooner or later it was bound to happen; as I was making my way to the cashier’s island, my tray tipped over and my meal and coffee landed onto my lap and the floor. Gloria, the cafeteria worker who managed the hot food station, came to my rescue. In past visits, she had always asked if I needed help carrying my tray. And, I said, “Thank you, but I’m OK.” With a scolding look she said, “Now, you let me help you.” She brought me a towel, and, as I blotted off my pants, she prepared a new tray of food. She led me to the front of the cashier’s line. As I was paying, a woman’s voice declared, “Hey, that’s not fair. You can’t cut in like that.” I knew that voice from my organic chemistry class. I turned to look at her and asked, “Would you like to trade places with me?” I didn’t need to say another word as Gloria’s verbal barrage to my classmate began: “He just put you in your place. Don’t you dare mess with him. I’ll send you to the back of the line myself.” But I was no stranger to hearing the words my classmate had just spoken. “It’s not fair that you’re in a wheelchair.” “It’s not fair that you’re receiving special consideration as a wheelchair user.” Or, “It’s not fair but that goal is not realistic for a person in a wheelchair.” At times, my emotions ignited as I listened to each of these versions of unfairness. I began to see how an individual could categorize me in any way they chose, perspectives embedded in human nature that would be difficult to change. The meaning of the phrase, it’s not fair, was a concept I thus decided would no longer be part of a narrative I used. I disowned that phrase and let its words and content belong to someone else.

The meaning of the phrase, it’s not fair, was a concept I thus decided would no longer be part of a narrative I used.

I tried to anticipate what convincing excuse the maître d’ would formulate. “I’m so sorry, but you are blocking our main service pathway.” “You didn’t realize this before you seated us?” I challenged him. “Let them find a new place to sit,” I told my date. He walked away, his plan for a table reassignment thwarted. My date and I finished our dinner. The experience heightened the intimacy between us. It was an excellent evening. Perhaps, the customer “experiencing discomfort” by our presence could be appeased with a complementary antipasto platter, or perhaps cocktails for his table would lubricate his tolerance for the unconventional “others” in front of him. In the past, I habitually speculated as to why certain people felt uncomfortable around me. As I grew older, the reasons for their discomfort became less important. At the time, I wondered if the uncomfortable Italian cafe customer feared our uncoordinated eating might sprinkle pasta sauce upon him? Perhaps he was appalled by thoughts of people in wheelchairs becoming intimate? But likely a simpler explanation existed: the realization that, at any time, he too could be transformed into the object of his prejudice.




At Wayne State, organic chemistry was thought of as one of those “weed out” classes for students who might not be 14




“Is she really your girlfriend?” “Enjoy it while it lasts.” “She must be very understanding.” “I hope she’s not taking advantage.”

In any field of study, graduate school offers academic and intellectual challenges, but life continued to exist outside classrooms, graduate teaching assignments, the library and the laboratory. After long days of research, my fellow graduate students and I would frequent pubs within walking distance of Wayne State’s life science building. I got to know one of our regular waitresses. She was an artist. Brief tableside conversations eventually turned into conversations over drinks at the end of her shift. I listened as she complained about her boyfriend and told me about her “hidden” disability, epilepsy. We met several times for drinks and conversation. I found her direct and to the point. The relationship never went beyond a flirtatious friendship, but I recalled her words. “When people look at you, they can see that something is really messed up. When they look at me, all they see is a great pair under my sweater. I have real problems too.” I learned something new here, the intrinsic vulnerability in all of us. She helped me understand its subtleties. A hidden disability can rarely disguise the emotions we feel.

I learned something new here, the intrinsic vulnerability in all of us.

What has made society so comfortable with de-sexualizing the sick, the elderly, and those with disabilities? Even medical professionals succumb to these perceptions; I have watched my doctors blush over the years when it came to talking about sex. Nevertheless, people with disabilities, are, in fact, capable of enjoying sexual intimacy.







Eating out collaborated to satisfy multiple palates, physical hunger, my desire for intimacy, and expanding my network of acquaintances within the urban community. Downtown Detroit, as well as offering convenient access to Windsor, Canada, offered adventurous cuisines and cafés to explore. I could impress a date, even if my tastes were mismatched with the ability to pay on a graduate student stipend. Windsor was a short drive from Wayne State’s campus via the Detroit-Windsor Tunnel or Ambassador Bridge. Combinations of espresso, gelato, and academic psychobabble on Erie Street in Windsor’s Little Italy were my proven aphrodisiacs. Marinated octopus, retsina, ouzo, and saganaki at Detroit’s Greek Town clinched the deal. Perhaps dating someone who was not in a wheelchair might avoid an encounter like the one with my favorite maître d’ from Washington, D.C. Shouldn’t one person in a wheelchair draw less attention than two? But this proved not to be the case. Waiters, hosts, busboys, and patrons weren’t the least bit hesitant to ask:

Beverly and I started to date in the winter of 1983. On Friday nights, we ventured off campus to the Detroit Institute of Arts and The Detroit Film Theatre which screened newly released foreign films. As with any new couple, we confronted the trials and tribulations of developing a relationship, which included factoring in the issues surrounding my disability. We were married in 1988, and Kayla was born in 1995, then Angela in 1997. As our baby girls grew, we ventured out to dine as a family. Beverly occasionally strapped a baby harness on me while I sat in my rear wheel drive scooter, a new and more stable mobility platform. People who say having children changes everything grossly understate its implications. The pleasure of socializing evaporates. Instead, you listen helplessly as your children describe embarrassing moments to a waiter. Multiple visits to the restroom usually appeased temperamental outbreaks. “Kayla, please sit down at the table.” “I don’t like this chair!” “I need to go to the bathroom!” “I want to go home. When can we leave?” 15

Toddlers are in perpetual motion. While sitting on my lap, Kayla decided to take control of my scooter. This unexpected motion bulldozed the table into Beverly and the adjacent patron. What a delightful time at Hometown Buffet. Wheelchairs could rarely out-compete the attention children drew to our table. Yet, as a young couple, my wife and I were frequently asked, “Are these your children?” We replied, “Only when they behave.”

However, my wheelchair also had a built-in force to alter interactions with strangers with such comments as these: “I’d sure like to have one of those.” “You’re good at maneuvering that.” “Do you have a license for that?” “Do you have brakes on that?” “Do you have a horn on that?” “How fast can you go?” And, the ever popular, “Don’t run over my toes with that.” Perhaps these individuals were seeking a means to soothe awkward discomforts they may have felt, or perhaps it was just curiosity playing its hand. At times, though, I also sensed some were reaching out in this way to discover what attitude I might reveal.




In 1998, I accepted a position with my biotechnology employer and relocated my family to a small town outside of Austin, Texas. During the transition between San Diego and Austin, my wife and I stayed at the Omni Hotel in downtown Austin. While ordering lunch at the café, I asked for a glass of iced tea. When it arrived, I requested a straw. The waiter replied, “In Texas we don’t drink our iced tea with a straw.” “We’re about to move to Texas and I will be starting a new custom. I’m from California and I always drink my iced tea this way. They say your teeth get stained less. And, we all have bright smiles in California.” “And, please bring the longest straw the Omni has to offer,” I said. “Isn’t everything bigger, taller, and longer in Texas?” He broke out in laughter. Learning to navigate the changes in my body and immutable physical limitations was not easy. I understood that in most instances, ninety-nine percent of someone’s initial observations about my disability resided outside of the reality and consequences of what my disability means for me. How could someone tell I couldn’t extend my arm to shake a hand, or that I was unable to lift a glass? My diverse assortment of customized drinking straws continued to capture my favorite beverages including, coffee, cappuccino, wine, a dirty martini and, of course, iced tea.

Sometimes ignorance is too difficult to combat.

As an adult, I now understand all too well how disability affects those who love you. After years of venturing out with Beverly, I began to see how her tolerance has lessened for comments thrown my way. As we walked into the mall one day, we overheard someone ask, “Why is that asshole parking in a handicapped space?” “Let it go,” I told her. Sometimes ignorance is too difficult to combat.







Adaptive technologies continued to facilitate the challenges I faced over the next few years. My wheelchair was now an advanced technological mobility fortress with a sophisticated multi-terrain suspension system and an onboard computer control package for smooth acceleration through my joystick. A flotation cushion secured to my tilting seat system helped to fend off the pressures of gravity.

Since moving to Peoria, Arizona, in 2004, my family and I frequently visited Fry’s Electronics on Thunderbird Road. We enjoyed the superstore and typically dropped into their café for lunch or a light snack. It had always been a good experience until one day in April of 2010.


My abdominal muscles were weak, but with careful planning I could still eat independently. If Bev leaned me over as I braced my forearms against the table’s edge, the shorter distance gave me enough of an advantage. I could bring my face closer to the plate and, with the assistance of a fork, would enjoy what others call “finger foods.” Smaller and lighter plastic utensils have replaced metal forks and knives. Beverly, Kayla, and I ordered lunch: two hamburger slider specials and a turkey sandwich with beverages. While enjoying our meal, my wife returned to the counter to ask for a fork to handle those goodies that sometimes slide out of a slider.

“How many in your party?” “Do you prefer a booth or table?” Then at the table, my wife and children received the next question. She politely asked, “Does he need a menu?” My wife responded, “Why don’t you ask him?” The hostess had observed, analyzed and categorized one of her patrons. Her stereotypical toolbox was activated. Something predisposed her to the conclusion that I needed no menu. Decades of dining out have enabled me to differentiate prejudice from default stereotypical responses often associated with disability. While prejudice can often be an insurmountable challenge to address in a short-term situation, sometimes beliefs surrounding a stereotype of disability can be easily disposed. In this case, the hostess was young, and, while my children were uncomfortable with my brief-but-pleasant aperitif to our hostess, a lesson was in order to help her reconsider her notions associated with disability. “Would you like to join us and read the menu with me?” I asked.

I have found ways to navigate the accessibility challenge. That was the easy part.

As one of the workers was about to give my wife a fork, the manager interrupted. “What did you order?” she asked. When my wife responded, the manager said, “That will be ten cents.” Beverly asked, “Are you serious?” “Yes,” the manager replied. My wife returned to our table. “The manager is an idiot. She wants to charge me ten cents for another fork.” Fortunately, before our meal ended a rogue employee brought us a fork and told us that what her manager did was just not right. Interestingly, this situation had nothing to do with my disability. I later learned Fry’s was concerned that too many employees were using plastic forks for lunch. The new policy also punished customers who visited their café. I now prefer to shop at Best Buy.




I have changed over the past four decades, but my culinary outings have continued with their usual set of characters and situations. Social stigmatization, accessibility, and a general fear of confronting the crowds were factors that often preyed upon my thoughts and desire to be around people. Yet I had a decision to make: would I let society’s perceptions restrict my palette and social life? I have found ways to navigate the accessibility challenge. That was the easy part. Venues, menus, utensils, table heights, aisle widths, doorways, and ramp slopes were mutable or could be repositioned. But it took time and experience for me to learn how to confront and travel through the societal maze of perceptions and prejudices that often surrounded me.t




After my daughter’s high school play, we decided to have a late dinner at a restaurant close to home in Peoria. As our daughters managed the double doorway, Bev and I entered. The customary salutations took place, and the hostess gathered information. 17



Strange Behavior
I don’t know the future behind those blue eyes— the ones that sparkle from the tears just shed, blackening the thick eyelashes he inherited from his daddy. I see those eyes carry him to scary places. His head is down, on hands and knees, chasing lines and patterns on the floor. Back and forth, back and forth, on asphalt, concrete, and carpet with shredded pant legs and blistered hands. Those eyes are drawn to spinning wheels. Strollers are turned onto their side as this fifteen-month-old boy stands like a DJ entranced in joy, as the wheels twirl in his hands. Those eyes are windows to a place he only knows. A place that people out there want to label, want to diagnose. But it’s those same eyes that ask to play peekaboo, that search me out in a crowd and recognize me as Ma Ma.

Previously published in the author’s collection. Autism Disrupted: A Mother’s Journey of Hope, Cardinal Publishing House, 2011.



First Responses
I can hear it in their voices, the shaky place inside that doesn’t quite know what to say to a mother that is facing the unbearable. I can hear the relief drip from their forehead, as they thank the Almighty that this crisis did not happen to them. Thanking the divine that for now, their children are spared from the many dangers of this life. I see them go about their normal days where children play, and little worries come and go. I go home to a house full of therapists and celebrate the simple interaction of my son’s hand in mine, as we walk and walk, trying to walk away from what might be.

Previously published in the author’s collection, Autism Disrupted: A Mother’s Journey of Hope, Cardinal House Publishing, 2011.





arla stood at the edge of the dance floor—well, it was actually the three-point line of the school’s basketball gym—watching Brian DeSorto flirt with Jennifer Jacobs with the big boobs. Their exchange put a fist in Carla’s throat. She focused so hard on Brian’s smile and Jennifer’s eyelash batting she didn’t see or hear anyone else. Someone tapped her arm. She knew it was her brother. Him she heard—even in a room with banging drums. He breathed through his mouth and hummed with a vibration strong enough to mix fruitsmoothies. When she’d been little, that vibration comforted her; now it was irritating. Her brother was a big galumph who didn’t get her at all. She ignored him. He tapped her arm again. Across the room, Brain tucked Jennifer’s hand into his and pulled her to the dance floor. His blue basketball jersey caught the light. Jarred pinched the soft spot on the back of her arm. “Ow!” Carla snapped. She spun to face Jarred and signed as quickly as her fingers could fly, “Leave me alone.” Jarred signed back, “Time to go.” Carla shook her head, hair snapping, and darted away through the crowd. She couldn’t believe Jarred hadn’t waited outside. This was her eighth grade dance—she should 20

be able to leave whenever she wanted. So, okay, Mom was working a double-shift and Jarred agreed to drive. But he said he’d meet her at eleven, fifteen minutes away! She had a quarter hour for Brian to notice her. “Lana, quick,” she dashed up to her best friend. “Hide me!” In too-tight jeans, Lana—with a heart as big as the butt shoved into those jeans—grabbed Carla’s arm and yanked her toward the girls’ locker room. “What gives?” “Jarred’s gonna ruin everything,” Carla said. “If Brian sees me, he’ll ask me to dance.” “All you need to do is hit the floor,” Lana said. “Then you’re all anybody’ll see.” Carla smiled; Lana always said the right thing. She made a good look out, too, Carla thought, as Lana peeked out of the locker room. “Coast is clear,” Lana said. “Let’s go.” Carla glanced at the mirror. For tonight, she’d bought new jeans—no name brand, but she thought they looked pretty good. She’d even grown her hair out for the past year— she’d heard Brian liked girls with long hair. Her kinky mass of curls never laid totally straight but tonight the frizzies cooperated. Her lips—well, they were what they were. All in all, though, Carla thought she looked pretty good. Not hot like Jennifer Jacobs, but okay.

Now she just needed Brian to notice her, ask her to dance. She opened the door and stepped into the gym, Lana right behind. “Go Jennifer!” Someone shouted. “Check out the dancing machine,” the DJ intoned. “C’mon everybody—get out there and join her!” At the center of the gym, Jennifer gyrated with Brian. For a second, Carla felt pride. After all, she’d taught Jennifer those moves while volunteering at the only dance studio in town. Then she wanted to kick herself. Jennifer had Brian riveted. “Guess I’ll leave,” Carla shrugged. “Why?” Lana asked. “Jennifer’s gorgeous. Popular,” Carla said. “She’s even nice.” Maybe Brian deserved someone like Jennifer, with her big ol’ boobs and oozing niceness, and not someone like Carla. Lana grabbed Carla’s arm. “That’s your move. How’d she learn that?” “I taught her.” “No kidding? Why?” Carla shrugged. How to explain her passion for dance? Dancing had taken all her free time since she was four years old. Now she was good enough to teach younger kids, and the occasional teen who wanted to hip-hop. Whatever the form—dancing, competing or teaching—Carla thrived. If Brian just asked her to dance, she’d blow him away. For a long time she’d blamed Jarred, her giant of a brother who cast such a wide shadow, for all things bad. Sure, tonight he played chauffer, but normally she helped him. Like when Mom bought the TTY phone. Jarred often ignored it and Mom said, “Just answer and take a message, Carla— quit being selfish.”

It wasn’t like Jarred really needed her. But he acted like he did. Waited for her at dance class—watched her, smiling like a dolt. With the speakers cranked up and the bass rocking the floor, he’d shudder and twitch to the beat—well, a hair behind it. Her friends giggled behind their hands and he didn’t seem to notice. So he couldn’t hear, big deal. Being deaf wasn’t a license for jerkhood. Even worse, Jarred didn’t care about being deaf, or about what people thought. He once told her he didn’t want to hear, even if surgery made it possible.

For a long time she’d blamed Jarred, her giant of a brother who cast such a wide shadow, for all things bad.

Oh, why did he always, well, lumber. But tonight, looking her best—and without Jarred—Brian still hadn’t seen her. Carla sighed. “Quit moping,” Lana said. “I’m not. See Jarred?” Lana glanced around. “No—and he’s easy to see; he’s built like a tree.” His being big wasn’t the worst part. When he talked he sounded like a doofus; he didn’t care it embarrassed her. He’d laugh and rumple her hair like she was back in friggin’ third grade. “Go!” Lana pushed her through the door. For a quick flash, Carla unexpectedly wanted her hair rumpled. Then her shoulders slumped. “What for? With Jennifer there, I’ll be invisible.” 21

“Oh get off the self pity train,” Lana snapped. “Go shake your tiny butt and you won’t be invisible. You may’ve taught Jennifer the moves, but they’re imitations of yours. Girl, you own the moves.” Lana picked caramel corn from her braces. “Get out there!” Carla was a dancer because in her heart, in her blood, the beat never stopped. When she danced, she didn’t live in a small town in the middle of nowhere. When she danced, she was someone better, from somewhere better.

“Ooh, you better go get him,” Lana whispered. “Quick!” Hearing Lana’s panic, Carla turned. Then her eyes widened in horror. Jarred! Jarred on the dance floor. Jerking. Twisting in some weird parody of a drunken scarecrow. Moving toward her. Carla’s feet were suddenly planted to the varnished maple floor. Jarred’s body lurched and twitched, his arm reached out. He curled his fingers in a come-here motion, asking her to join him on the dance floor. A bonehead grin smothered his face. Carla swallowed. Hard. Then Jennifer Jacobs danced over. “Isn’t that, like, your brother?” she sing-songed. “I’ve seen him at the studio.” Carla didn’t respond. “Isn’t he dumb or something?” “No.” Not broken from her freeze, simply and instinctively—automatically—Carla defended. “He’s deaf. Big difference.” “Oh,” Jennifer said. “Looks like he wants you to dance.” Carla felt the roots beneath her feet stretch far enough to touch the earth’s burning core. “He’s pretty good,” Jennifer said. “I mean, like, for a deaf guy and all.” The song ended. From the corner of her eye, Carla saw Brian stop moving. His thumbs found his front jeans’ pocket and he shrugged, seeming to notice the other dancer on the floor. Jarred didn’t stop; he hadn’t heard the music end. Carla assumed the stomping feet of all the kids made the floor feel as if the speakers still thumped. Jarred’s jerking body jolted ever closer toward her, his vibrating chest and mouthbreathing now the only sound in the room. No one laughed anymore. No one giggled or sniggered. Everyone stared at her unwieldy brother as he worked his way across the floor, his sneakers adding an occasional squeak to his symphony.

Carla felt the roots beneath her feet stretch far enough to touch the earth’s burning core.

Suddenly Brian spun on the heel of his boot and bent one knee as he swung his other leg out in a loose-limbed, slung back kick. Carla’s breath caught: Brian DeSorto could dance. “Look at that,” Lana breathed. Carla only nodded. Everyone, including Jennifer, backed off the dance floor to give Brian room to move. The DJ slid into Miley Cyrus’ “We Can’t Stop” and Brian cut loose, whipping out a Wu Tang move before sliding into an LA Walk. Carla wondered how he knew the moves, but didn’t really care. The fact was, he did. Her feet itched to join him, but just as she made ready, Jennifer returned to the floor. Brian slapped a goofy smile on his face, flipped a lock of hair back from his forehead, and twirled Jennifer in a tittering spin. Bursts of applause spattered through the teens surrounding the dance floor. Lana shoved her again. “I’m leaving,” Carla said. “Jarred’s only gonna wait so long. Besides, nothing is happening for me here.” Her stomach felt queasy. New clothes, hair, make-up: none of it mattered. She was still just Carla: Carla of the cheap jeans, frizzy hair and big ol’ lips. Then, through misty consciousness, she heard a few sniggers.


Then his eyes caught hers and Carla realized she was wrong. Jarred knew. He knew everyone stared at him. He knew the music had stopped. His eyes flicked quickly to Brian DeSorto, then back to hers. Carla’s breath released in a whoosh: the big galumph even understood she’d wanted to dance with Brian. He curled his fingers one more time before coming to a halt a few feet away from her. Gently, he signed, “Dance with me.” And he smiled his smile that made her insides turn to butter. The smile he’d smiled when he carried her to the house when she’d fallen and broken her arm. The smile he’d smiled when Daddy dropped her off after his last-ever visit. The smile he’d smiled every Christmas morning when she opened her eyes and he’d sign, “Merry Christmas, Little One.” She took a step forward, gripped his fingers, and allowed him to spin her out to the silent floor. From inside came the beat; from inside came the music. Her feet found the rhythm and with no further thought, she began her favorite hip-hop routine – the one she’d practiced for competition. Half way through her Soulja Boy moves,

thanks to the DJ, Leona Lewis’ oldie, “Bleeding Love,” blared through the speakers. Carla caught the tempo, adjusting her popping to the new pace. When she spun, dropping into a half split, she saw Jarred had left the dance floor. But she wasn’t alone: Brian DeSorto pumped it out beside her. He beamed and she felt herself soar. Gradually other dancers filled the floor, moving, and pumping it out. Jennifer and Lana even danced with a small group. Carla briefly relished the warmth spreading through her; but as soon as the song ended, she made her way to the edge of the three-point line. “Wait!” Brian said. “You leaving?” Carla nodded. “Dance one more before you go?” he paused before asking, “With me?” Her cheeks blushed, her eyes shining, Carla said, “Next time!” before spinning away as the wall clock clicked to eleven.t




“The whole matter revolves around the self-respect of my people. How much satisfaction can I get from a court order for somebody to associate with me who does not wish me near them?” -Zora Neale Hurston, August 11, 1955 Burn the ADA1; May its embers Singe The psyche. Instead, Build ramps, design anew— Don’t live within the parameters Of a law.

Americans with Disabilities Act

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KALEIDOSCOPE Magazine has a creative focus that examines the experience of disability through literature and the fine arts. Unique to 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.


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At St. Coletta’s School
From my meager room with its single wooden table and two straight-back chairs, Having just awakened from the kind of sleep that only a Franciscan convent bed can give to this poor guest . . . I see you. A child of eight? Ten? Twelve years? And watch you walk in the gray morning. The rain dribbles from your nose and ears. Your leather shoes slosh through the shallow pools. You hold your hands in front of you and fix your gaze upon the north wing of the refectory where you will eat your breakfast. Thrust your head forward-front upon your neck and peer intently as you walk. The Spring birds sing to you. Sing for you. Sing you to your breakfast. Even though it rains.





:15 a.m.—the longest minute of my day, when Mom slides open the door of the van and presses the button to unfold the ramp. As the motor whines and the black steel platform creaks outward, I close my eyes and wish for about the hundredth time that my wheelchair will break down. Then she’ll have to take me home, and when I get there, I plan to hoist myself into bed and never come out again. But it doesn’t happen. Like always, I push the joystick forward, the chair moves, the lift descends, and I roll toward the school doors like one of the Daleks on Doctor Who—those alien robots shaped like upside down trashcans, with the tiny men inside. Exterminate! Exterminate! I scream silently at the other kids, who automatically step out of my way as I whizz past them through a thin layer of slush. I want to be Sarah Jane Smith, traveling space and time in the TARDIS, but I’m not. I’m only Gretchen Sorenson, that girl in the wheelchair. My aide, Marlene, meets me outside homeroom, takes off my coat, and stands back while I open my locker.

The first time I tried to do this, it took twenty minutes and ended in tears; now I can usually get it in one or two attempts. First, I maneuver alongside the door so I can reach the combination lock, a couple inches above my head. Opening the lock is the hardest part, because my hands are paralyzed. To keep it steady, I get my left hand up behind and wedge my middle finger, which might as well be made of silly string, through the bolt. Then I use the outside edge of my right hand to spin the dial, which is klutzy because I can’t actually feel anything there, and with the lock being so high and my hand in the way, it’s hard to see the numbers. All that so Marlene can hang up my coat and put away my scarf and mittens. Marlene is nice, but clueless. When we met on the first day of school, I waved or something and she blurted out, “I thought you were supposed to be a quadriplegic.” She sounded angry, like I had personally lied to her. I mean, a lot of people, when they hear “quadriplegic,” picture that artist they made a movie about, who paints with her mouth, but I thought Marlene, being an L.P.N., would know better. Mom, who was there to go over my

schedule, explained that I am a quad (quadriplegia=impairment of all four limbs); it just happens that where I broke my neck, at the C6 and C7 vertebrae, left enough of my arm muscles working so I don’t look like one. Below the arms, though, I can’t feel or move anything. I lost all that in a junior high gym two years ago. “Oh honey.” Marlene hugged me to her double-D chest, which smelled weirdly like peach yogurt. “It’s such a shame that had to happen to a pretty girl like you.” Like I said, Marlene is clueless. She completely missed the point: I’m not pretty; I’m a cripple.




First period is Chemistry and we have a lab today, making soap. Marlene and I are at a little table the teacher rigged for me in the back of the room. The regular lab benches are approximately even with the top of my head and it was obvious I wouldn’t be able to


work at one of them, so the first time we did labs, he told me to watch and take notes. I mentioned that to Mom and the very next afternoon we were in the principal’s office with the teacher and my guidance counselor, where she informed them that this was not an acceptable accommodation and they would find a way for me to participate fully in class or she would take it to the school board. Mom was a county attorney before the accident. These days, fighting with the school administration is the only chance she gets to exercise her prosecutorial muscles. I swear most of them would never have heard of the Americans with Disabilities Act if not for Mom. She practically had it memorized the day after President Bush signed it. Marlene sets up the Bunsen burner and ring stand, while I pipette ingredients into a beaker. Squeezing the suction bulb with my teeth may not be the safest thing in the world, especially with chemicals like sodium hydroxide, but it works. Marlene is down today; her oldest son fell off the wagon again and his girlfriend won’t let Marlene see their kids and it just won’t be Thanksgiving without her grandbabies. She tells me about a lot of stuff most people wouldn’t discuss with a fifteen-year-old girl, like her abusive ex-husband, her alcoholic son, and her hysterectomy. I’m half listening to her, but mostly to the girls next to me, Ashley, the homecoming princess and her sidekick Nicole. Ashley is a gymnast. I’d know even if she didn’t brag about it every day. She has the build: broad shoulders, narrow hips, flat chest. I don’t have that build, which may have been part of the problem. Ashley is explaining her new floor routine and Nicole is

making excited noises, even though she has no idea what Ashley is talking about. Nicole tries too hard, with her ripped jeans that probably cost eighty bucks, black eyeliner, and bangs teased four inches high. Ashley, meanwhile is wearing black leggings, a purple plaid flannel shirt, and no makeup, but she looks adorable, because she’s just one of those girls who do. Would you believe I used to be like you? I want to say. In seventh grade, I placed third in the state on balance beam. I was the only person at my level to pull off a round-off double back dismount, like Mary Lou Retton in the Olympics. I was the girl everyone copied. But look at me now, in a stonewash denim skirt, flower-print turtleneck, and kelly green flannel shirt. I look like somebody’s mother. No surprise, given that Mom has bought all my clothes since the accident. I asked for a flannel shirt, meaning something grungy, like Ashley has on, and she came home with something out of a sporting goods catalog. Part of me wishes what happened to me would happen to Ashley. One little slip on the uneven bars was all it took to go from that to this. But I wouldn’t wish this on anyone. The mixture in our beaker has turned smooth and I nod at Marlene to shut off the gas. Ashley and Nicole have totally stopped paying attention to their experiment. Out of the corner of my eye, I see their soap solution bubble up in the neck of their beaker. “Um, Ashley?” I say. She’s jabbering about saltos and doesn’t hear. “Ashley,” I say again, a little louder. Still no reaction.

“Watch out!” I yell, as the beaker bursts into flame. Nicole screams. I zoom back. Ashley jumps up and knocks over her stool, which lands on my left front wheel, so now I’m dragging it across the floor as I try to get out of the way. Marlene stands there with her mouth hanging open. The teacher runs over, shuts off the gas and dumps a pail of sand on the burning glassware. Ashley and Nicole turn and glare, like I somehow jinxed them. On the inside, I’m laughing.




Third period, French, we have a test, which means the Terminator Hand needs to make an appearance. “Terminator Hand” is what some kids call my tenodesis splint. It’s a device I use to write. See, I used to be left-handed, but now my left hand is hyperextended; the fingers are stretched out straight and I can’t bend them. I can move that thumb a little—enough to scratch my nose, say—but otherwise I might as well have a swim fin on the end of that arm. My right hand, on the other hand, is curled up, but by flexing my wrist, I can get a pinch between my thumb and index finger that’s just about strong enough to pick up a potato chip. That’s where the Terminator Hand comes in. It has metal clips that go over my thumb and fingers, and a hinged metal support that runs up the inside of my arm and straps on about halfway to the elbow. With that extra support, I can hold a pencil, or a makeup brush, or things like that.


I first heard the name Terminator Hand a few weeks ago. Marlene and I were in the lunchroom, sitting behind a table of jocks. One of them, some kind of soccer hotshot who goes around in uniform shorts and cleats every day, regardless of the weather, looked over at me and wiggled his eyebrows. “What’s up with that girl in the wheelchair, anyway?” Mr. Cleats said to his friends. “I hear she’s paralyzed.” “Yeah, but was she born like that or what?” “I heard she got hit by a car and was in a coma for like a year.” Seriously? Guys, I fell on my head in gymnastics. And do you think I can’t hear or just that I’m too retarded to understand? “She’d be kind of hot if she wasn’t you know….” I can’t tell who says this. “I’d do her.” Mr. Cleats, again. “No way, man.” “Sick.” “You perv.” “Dude,” one of the guys says, “have you seen her Terminator Hand? She could rip your balls off with that thing.” Mr. Cleats looks straight at me. I’m trying to lift a taco with my stupid paws. Our eyes meet for a second. “Yeah,” he says, “but her mouth works.” The taco snaps in half. Ground beef and lettuce spill onto my lap. Marlene hurriedly brushes off my legs and then jams my joystick into reverse and spins me around. Her face is beet red. “Bathroom,” she says, practically running alongside as she drives my chair to the exit. That time, I have to say, Marlene was not so clueless. And I doubt the Terminator Hand could actually rip anyone’s

balls off, but if Mr. Cleats ever comes near me, I’ll try.




I finish the French test in half an hour, even though writing with my right hand is super slow. It’s like being in kindergarten again; I have to think about how to make each letter and they all come out crooked. It would be so much easier if I could just get my floppy swim fin fingers to hold a pencil. Maybe I could get rid of the Terminator Hand for good. I try wedging the pencil in between my two middle fingers and supporting it with my thumb, the way I hold a fork, but it wobbles all over and by the time the bell rings, my wrist aches from twisting it to keep the lead on the paper. Fourth period, after lunch, Marlene leaves me in the library while she takes her break. I don’t know whose idea this was, but I guess it beats rotting in study hall with the potheads and losers. Most days, the only other person in here is a student worker who sits at the desk, typing on the computer all hour. I know her name, Petal Vandenberg. She’s a junior, and the craziest girl I have ever seen. This month her hair is green. In October it was platinum blonde, and before that, electric blue. She’s wearing black and red plaid pants, a frilly shortsleeve top, and ruby-red pumps straight out of The Wizard of Oz. What I can’t get over, though, is her scarf, a handknit striped thing that hangs almost to the floor, exactly like the one Tom Baker wore as Doctor Who. Someday maybe I’ll work up the nerve to tell her that’s my favorite show. The book I’m supposed to read for English is driving me nuts. Am I really expected to feel sorry for some spoiled rich kid who broke his leg? So you can’t run anymore. Try not being able to go to the bathroom on your own. I put it down and motor into the stacks, not looking for anything, just sick of sitting still. Why did I want to come

back to school so bad? I was better off doing the home school thing with Mom. I still don’t get why we had to move to the suburbs, either. I mean, there are one-story houses in St. Paul, right? Didn’t anyone think about what it would be like for me, starting a new school as a tenth grader, not knowing anyone, and being in a wheelchair besides? “Are you okay?” says a voice behind me.

It would be so much easier if I could just get my floppy swim fin fingers to hold a pencil.

“Yeah, fine.” I wipe the tears out of my eyes and reach blindly for the first book I see, trying to pry it off the shelf with my semi-functional thumb. “Here.” Petal Vandenberg squeezes around my chair and pulls out the book. She glances at the cover, raises an eyebrow, and hands it to me. “You want me to check that out for you?” I look down at the volume in my lap. Heidi. Oh, for Christ’s sake. Now she probably thinks I’m retarded. “Uh, no,” I say, my cheeks burning. “I just wanted to see something.” She shrugs and walks away.




Fifth period, Algebra II, Ms. Tollefsrud is handing back a test. She pauses at my desk and says to Marlene, “I’d like to see Miss Sorenson after class.” I have no idea what that’s about. It can’t be my grades. The lowest score I’ve gotten all year was a 99; on this


exam, with extra credit, I got 104. And I never talk in class. At the end of the hour we go up to Ms. Tollefsrud’s desk. Marlene sits a little behind me, rubbing her hands on her gray ribbed polyester pants. She looks more nervous than I am. “Tell me,” Ms. Tollefsrud says, “does Gretchen do all her own work on tests?” What the hell? Does she seriously think Marlene is feeding me the answers? Marlene, who admitted to me that she dropped out of school because she got knocked up at sixteen? Who spends most class periods reading Harlequin romances? That’s right; if you look close, the title on that book isn’t Kissing Cousins, it’s Kissing Cosines. “Of course she does,” Marlene says. “Gretchen’s a very bright girl. “But I never see her take notes.” That’s it. I am so sick of being talked about like I’m not in the room. “I don’t have to take notes,” I say. Ms. Tollefsrud’s head jerks back like I’m spouting fire or something. It suddenly dawns on me that she didn’t think I could talk. What is it with people? I go on. “There’s no point taking notes when everything you say is in the book. And I’ve never cheated in my life.” “Okay.” Ms. Tollefsrud smiles a little. “Would you do something for me?” She opens a drawer and pulls out a mimeographed worksheet. I glance up at the clock. “Don’t worry,” she says. “I’ll give you a pass. Could you just try the first two problems on this sheet?” Oh God. She needs proof? Fine. I roll over to the closest desk. Marlene pulls the Terminator Hand out of my back-

pack, but I wave it away. If I have to put on a show, I’m going to do it on my own terms. Five minutes later, my left wrist is aching and the problems, which didn’t look like anything we’ve done in class, are finished. “Very good.” Ms. Tollefsrud nods vigorously at my faint, loopy handwriting. Her earrings tinkle. “Less than half the teams got that second one right in competition. Gretchen, how would you feel about joining the Math League?”

Maybe not, but you’re not saying he’ll come, are you? When Dad left eight months ago, he promised to visit every weekend. Then it became every other weekend, but work kept getting in the way (or so he said). I haven’t seen him since before the Halloween blizzard. Still, I keep hoping; there’s a pumpkin pie in the oven just for him. “He was excited about you joining the Math League.” Mom finishes peeling the last apple and sets it on my cutting board.




“I think it would be good for you,” Mom says. “You might make some new friends.” It’s Wednesday night and we’re baking pies to take for Thanksgiving. Mom is peeling apples and I’m slicing them with this ring thing. You press it down on top of the apple and it makes eight wedges. Then I turn the wedges on their sides and cut again to make chunks. On the counter are four piecrusts I made one hundred percent by myself, start to finish. If I could just figure out how to hold a knife, I’d be a regular Julia Child. “But they’re nerds,” I say. “What does that really mean, ‘nerd’?” “Geeks, Mom. Weirdos.” “And what makes someone a geek? Being intelligent? I guess I’m a geek then.” Yeah, you kind of are, I think. We’ve been having this same argument since I got home from school on Monday. I’m sick of it. “So,” I say, to change the subject, “what are the chances Dad will show on Friday?” Mom narrows her eyes at me. “I don’t like that tone, missy.”

If I could just figure out how to hold a knife, I’d be a regular Julia Child.

“You told him?” I slam the slicer down on a wedge and two pieces go skittering to the floor. Mom leans over and picks them up. “It’s quite an honor that you were asked. I thought he’d want to know.” “I’m not doing it.” I push a mound of apples into a mixing bowl and slide the last fruit into position for cutting. “Please, Gretchen.” Mom washes her hands and comes back to the table with sugar and cinnamon. “Just give it a try. You might like it.” “But I’d miss physical therapy.” Ha! She can’t argue with that. As usual, Mom is way ahead of me. “I called the rehab center this morning. They can fit you in at one on Fridays. The school will give you an early release that day, and Ms. Tollefsrud assures me it won’t interfere with the Math League schedule.” “You talked to Ms. Tollefsrud too?”


“Well, I thought I’d better understand what’s involved. We only have Marlene thirty-five hours a week, so if you do this thing, you’re going to be on your own.” I measure out a cup of sugar, considering that. “I think you can manage practice without help, don’t you? If you need to travel for a competition, I’ll come along.” Mom spoons flour and cinnamon into the bowl. “Ms. Tollefsrud is thrilled to have another girl on the team—there’s only one right now—she mentioned a funny name—Flower or something?” I’m not listening. Like a skipped record, my brain is repeating the words “on your own.” In the last two years, I have not done one single thing on my own. There’s always someone—Mom, Marlene, nurses, therapists—at my side or in the next room, ready to jump to my aid. I know I could do so much more if they’d let me. What do I really need Marlene for anyway? Chem labs? Carrying my lunch tray? Handing me pencils? Okay, I do need help with the bathroom stuff, but . . . okay, so, Math League practice isn’t exactly freedom, but it’s a start. It’s a chance to act like a normal kid for ninety minutes a day. Well, like a nerd, anyhow.

This morning, her eyes are red and her face sags more than usual. “Your father is very sorry,” she says, as she slips long johns and a pair of rust-colored stirrup pants over my ankles. “Yeah.” I stare at the ceiling while she pulls the pants up my legs. “I’ve heard that before.”

pull the sleeves over my wrists. A quick flip over the head, catch myself before I fall, and it’s done. The turtleneck is harder. I start out the same way as with the undershirt, but when I try to put it over my head, it sticks. I reach up, hook my thumbs inside the neck, and fold straight forward, head on my knees, like a rag doll. Mom grabs my shoulders. “Don’t!” I yell, my voice swallowed by the fabric. She lets go. Somehow, using teeth and palms, I manage to shimmy that turtleneck down. Taking a deep breath, I push myself up again and lean back against the head of the bed, which Mom raised while I was fighting with my shirt. She hands me a cardigan—brown with autumn leaves embroidered on the pockets—I’m in old lady clothes again—and for a minute I just stare, too exhausted to think about putting it on. How did I end up like this, where simply getting dressed is a full callisthenic routine? This is why Dad left, and why he never visits. Mom tries to deny it, saying they were already discussing a separation before I got hurt, but I know the truth. I was there at the dinner table when Dad looked away while Mom sliced my meat. I saw the disgust on his face when I dribbled soup off a wobbly spoon. I heard their midnight arguments—Dad insisting we had to make someone pay; Mom telling him over and over we didn’t have a case, it was just an accident. It all boils down to one thing: He would have been happier if I died that day, so he didn’t have to live with a cripple.

It all boils down to one thing: He would have been happier if I died that day, so he didn’t have to live with a cripple.

“Turn toward me.” I hook my right arm through the rails on the left side of the bed and pull until I roll onto my side. Mom yanks the pants over my upraised hip. “Other way,” she says, and I roll onto my right side, so my back is facing her. “Don’t be so hard on Dad, Gretchen. You know he has a very demanding job.” The bed bounces as she gives the stirrup pants one last tug. “Okay, sit up.” She’s holding out a bra. I wriggle an elbow under my side and push up into a sitting position. The tricky part is keeping my balance while I put my arms through the straps and she hooks it. Not having control of my stomach and back muscles, if I lean too far, I flop over. And to think I used to be able to do a handstand on a four-inch-wide beam. “Let me do the rest,” I say. Mom hands me a thermal undershirt. This one is easy. I spread the shirt in my lap, push my arms through, and use my teeth to




Monday morning the world doesn’t look so good. Dad didn’t show. Friday we had the second blizzard of the season and supposedly he was tied up with work Saturday and Sunday. I heard Mom on the phone with him last night. Her voice was too quiet to make out the words, but the angry, choking tone was clear, just like all those arguments last winter, before he left.




I do put that cardigan on, and I slide into my wheelchair without any help from Mom. Just for the heck of it, I decide to use my manual chair today, instead of the electric—the first time I’ve dared to use it for a whole day at school. By the end of sixth period, my arms are so sore, I have to ask Marlene to push me to Ms. Tollefsrud’s room.


Inside, five guys are sitting in a circle, papers spread out around them, rolling a bunch of weird dice. I spy a Dungeons & Dragons manual on one of the desks. Just like I thought: nerds. In the middle of the room, a kid in high waters is reading a comic book. At the back sits a boy with a purple Mohawk, doodling on his arm with a red pen. I park in my usual spot at the side. No one pays any attention. At 2:30, the door opens, and in walks Petal Vandenberg, the green-haired girl from the library, only today her hair is orange. She’s wearing combat boots, fishnet tights, a leather miniskirt, a black leotard top, and a faded Care Bears T-shirt. As usual, she has the Doctor Who scarf coiled over her shoulders. She goes straight to the teacher’s desk and drops an Army-surplus knapsack that looks like it weighs about fifty pounds. “All right, nerds.” Everyone in the room stops what they’re doing. “Ms. T. has a staff meeting, so we’re on our own for the next half hour. She left some practice drills.” Petal hands a stack of papers to the nearest member of the D & D circle. “You might have noticed a new face in the room,” she continues. All heads swivel in my direction. “This is Gretchen Sorenson, and according to Ms. T., she’s brilliant, so watch out.” She winks at me and my face burns. Brilliant, sure. A genius who reads children’s books.

“Right, so, I’m going to show Gretchen the ropes. The rest of you geeks know what you’re supposed to do, so do it.” Like a chemical reaction, the bodies in the room separate and recombine, Mohawk with a pale kid from the D & D group, comic book kid with an Asian boy, and Petal with me. Flipping to the second page of the stapled worksheets, she says Ms. Tollefsrud wanted her to check out my geometry skills. I pick up a pencil the way I’ve been practicing and start to work, but maybe because of all the pushing I’ve done today, or maybe because I can’t believe Petal Vandenberg is sitting here talking to me, I can’t hold onto it. Three times I drop the pencil and three times she picks it up off the floor. After the second time, I see her studying my hand, which doesn’t help. After the third time, she sticks a pen between her teeth and examines her own hand, turning it front and back. “Hang on a sec,” she says, grabbing my wrist. “Have you ever tried this?” She weaves her pen between her fingers, over the first one, under the second, and so on, so the point comes out under her pinky finger, instead of facing the thumb, the way I had it. Quickly, she writes “Gretchen” at the top of my paper. What is she? An undercover occupational therapist? This is too weird, but I can see how it might work. I get my pencil into the same position and try it. Immediately my handwriting is about a hundred times clearer and my wrist doesn’t hurt. “How did you know to do that?” I say.

Petal shrugs. “What you were doing looked painful. I figured there had to be a better method.” I go back to work on the last problem. “You weren’t really reading Heidi, were you?” she asks. “No.” My cheeks get hot again. “I mean, it’s cool if you were. Don’t tell anyone, but I’ve read Harriet the Spy like fifty times. She’s kind of like an old friend.” “Yeah, well, I’m not really into Swiss goat girls.” Or fairy tales about miracle cures. Petal laughs. Her laugh sounds rusty, like she doesn’t use it very often. All of a sudden, I feel like I’m going to cry. I can’t speak, so I swing my backpack around, fish out a notebook, flip several pages, and slide it onto Petal’s desk, pointing to a squiggly blue object I drew in the library this morning. “Is that supposed to be a TARDIS?” She says. I nod. “Oh my god.” She elbows me in the tricep. “You are such a nerd.” And I think to myself, maybe being a nerd is all right. Anyway, it’s better than being “that girl in the wheelchair.” t




Kevin White, Behind the Mask, 2011, computer art, 8” x 10”

“It brings me real joy . . . I try to explain it in words but I can’t. It is a blessing from above.” ~Kevin White


s a young boy growing up on the east side of Cleveland, Ohio, Kevin White loved comic books. When his mother or father would tell him to “go and do something,” he usually chose to go up into the attic and draw superheroes. He had a knack for replicating the characters he saw in his comic books. “At a very early age I liked doing art. I thought it was nice that I could do something different than what the other kids were doing.” He describes it as a time of quiet that brought him “peace.” He pursued art through junior high and high school and when it was time to go to college he says, “I knew what I wanted to do and just went for it.” He pursued a degree in commercial art advertising. 32

In his early 20s, nearly finished with his degree, he took a summer trip to visit his grandmother in Delaware. He hadn’t made it to her house yet when he apprehensively climbed onto the back of a motorcycle, behind his cousin. He set his fears aside and embarked on his first motorcycle ride. It was a bright, sunny day. Picture-perfect. As they rode down the street he gazed up at the sky—it was beautiful. That’s that last thing he remembers from that day. The next time he opened his eyes, he was in the hospital and family members were standing over him. A drunk driver had hit them. Details about the accident are still a mystery, but his cousin and the driver of the other vehicle were able walk away from the accident. He could not. He suffered a spinal cord injury, damaging both C4 and C5 vertebrae.

Kevin White, Beyond Reality, 2009, computer art, 8” x 10”

White remained in the hospital for a year and a half. Physicians hoped the C4 vertebrae would heal, given time, but that never happened. Surgery was performed to stabilize his neck. During that time he says, “I was trying to figure out how I was going to get out of this situation. How was I going to get back up and moving again so that I could do my art?” He was focused on getting stronger and regaining movement. Only minimal movement returned. Acceptance grew slowly, and he began to wonder if he would be able to create artwork without the ability to move freely and use his hands. At the hospital, there was an art room on his floor. Inside, he saw several patients who were creating artwork—using their hands and arms. He didn’t see anyone holding a pencil with their mouth and says, “I just sat there.” He was encouraged to participate. He wondered. How? He visited the room six times before he approached an easel. With a pencil in his mouth he tried to draw a horse looking at the horse that Joni Eareckson Tada had drawn while holding a pencil in her mouth. He had been reading her book and if she could do it, maybe he could too. He was not pleased with the result. It was too abstract. What he saw did not measure up to the expectation he had for himself. Thinking back he says, “Maybe I didn’t give it a chance but it just wasn’t enough.”

He was eventually released from the hospital and went home to live with his family. Remembering that he had only nine credits left to obtain his degree, he decided to go back to school. “I couldn’t leave it undone.” The professors didn’t treat him any differently than the other students. “They didn’t cut me any slack—and I didn’t want them to.” Aides assisted him and it was a challenge, but he worked hard and received his bachelor’s degree in commercial art advertising. “It was a joyful day when I went across that stage and got that diploma.” Receiving the care that he needed was difficult at home, so after one year his family arranged for him to move into a nursing home in Madison. He was uneasy and a bit concerned about living there. Once he arrived, he was shocked to see people in wheelchairs zooming in and out of rooms, laughing and giggling. It gave him hope to see people who were smiling and happy. After settling in and becoming familiar with his new living arrangement, he met with a Bureau of Vocational Rehabilitation counselor and told him about his desire to create art. The counselor understood White’s request, but he seemed baffled. How could he help him achieve his goal? The artist


Kevin White, Peaceful Mind, 2009, computer art, 8” x 10”

asked for a computer. The counselor found the equipment he would need. White received a small, used Apple computer and an Origin Instruments Headmouse (a wireless head controlled mouse that is placed on top of the monitor). A microchip was attached to his glasses, and he was able to control the arrow on the screen by moving his head. With some dexterity in his right hand he could click the mouse. He started with simple shapes—triangles, circles, and squares—and filled them with color. He was drawing again and he was pleased. He mastered simple images, but he needed a software program with more design options. He asked for, and received, Adobe Photoshop. Learning the program would be something the artist would have to do on his own, and he accepted the challenge. Photoshop provided him with tools to create realistic images. Fascinated by outer space and the beauty of the sky, he transformed the circles and other shapes he had perfected with his outdated software into planets and shooting stars. Blended hues created a cosmic collision of color. He experimented with various methods to create intriguing designs, building layer upon layer. 34

With antiquated equipment, he needed a part for his computer when he met Karen Blake (her last name at the time). She was a member of her church benevolence ministry and she met with the artist to find out what type of assistance he needed. They have been friends ever since. She says, “We grew and grew in our relationship and now Kevin is not only a friend, he’s like a son to me.” She later met and married Don Densmore who says, “Of course, I had to adopt him, too.” When Don came into the picture, White was clicking the mouse with his thumb and it was not always easy for him. Don designed a way for him to click the left and right mouse buttons with his elbow, which he can do with ease. Don also began numbering, cataloguing, and printing the artist’s work. White entered three pieces in a local art show at the Madison Public Library. He won second place. The award validated his hard work and he started to believe, “maybe this will work.”

Kevin White, Star Glow, 2009, computer art, 8” x 10”

That show catapulted the artist into more shows. He was motivated by the opportunity to create art again. “Don and Karen have taken me around to different shows. What they do—the framing, printing, the running around—it is a blessing. I can’t think of anyone else who would do something like that. I thought, okay, maybe they are like angels or something. I have been blessed.” Don says, “We wanted to try to give Kevin more exposure to the public and to involve him in other local art shows so that more people could see his work.” He was able to find a used van that was in good shape and made some modifications to the vehicle (welding wheelchair tie-downs to the floor, adding a shoulder harness, and installing a winch to pull him up the aluminum ramps into the van) so they would have the freedom to transport the artist to various events.

The amiable artist has encouraged and inspired those who see his work and meet him, according to Karen. That caught him by surprise. It was not something he expected but, it has infused him with a desire to continue creating work, feeling certain this is what he was meant to do. When he shows his work at art venues, he enjoys hearing the heartfelt comments and seeing how children react to his art. When a friend came by to see his work, her son was drawn to his pictures of planets and said, “Hey, Mom, you know a cool person!” White says those words were “priceless.” His artwork is printed on various media including glossy photo paper, canvas, and aluminum. Although the artist has had some favorites through the years, each new piece he creates tends to trump that last one in preference. The striking Butterfly Cocoon image (back cover) was his favorite for a while and it is displayed on the side of the van.


Kevin White, Balloon Alley, 2009, computer art, 8” x 8”

Kevin White

The soft-spoken artist has a warm smile and a welcoming demeanor. Art is his passion, but he also enjoys watching sports, listening to music, and participating in a good game of chess, although he hasn’t played in years. He is a man of faith who believes in the power of prayer and a positive attitude. Those beliefs have brought him through difficult times. The Densmores do all they can to promote the work of the man who they say is “kind, humble, and dedicated to excellence in his art.” Along with White’s family, they have formed “one good team.” As a young boy he would retreat to the attic to draw and dream with colored pencils, crayons, and paper in hand. The talent was never really in his hands though, it was deep within. Although it remained dormant for a while, it has emerged in brilliant color. With a computer, his creativity has been unleashed in pixels. Grateful for a second chance to pursue his dreams, he creates cosmic worlds far beyond this one and stunning designs that dance with color, shape, shadow, and light. In the solace of his room, working on his computer, he is filled with peace, doing what he was meant to do and dreaming of things to come. To see more of his work visit

White now works with an “art coach” who is a photographer and very familiar with Photoshop. The man was a member of Don’s photography club and took an interest in White’s art. They work together once a week. He has learned new techniques and they have collaborated on some pieces—combining photographs with digital images. The one they are working on now merges a picture of Lake Erie with some planets and stars.


Kevin White, Boys Toy, 2011, computer art, 8” x 10”

Kevin White, Insane 4, 2010, computer art, 8” x 8”





hlomie awkwardly grinned at Mr. Golden, holding the glance just a moment too long. He had been waiting in the snow at the side door to the shul at 6:20 a.m., a full ten minutes before the daily morning service was set to begin. Mr. Golden unlocked the door to the synagogue and held it open for the younger man. He noticed that Shlomie’s long wool jacket was ripped, and his pants were torn at the knee. “Good morning Shlomie. What happened to you? Are you okay?” Not responding, Shlomie continued smiling, and plodded past him. He took a siddur from the shelf and handed the prayer book to Mr. Golden. Then he took another for himself, walked into the chapel, and unbuttoned the left sleeve of his shirt. He began wrapping the black leather strap of his tefillin around his left arm, his lips mouthing the prayer as his father had taught him. Mr. Golden shrugged and tapped on the control of the thermostat vainly trying to squeeze more heat out of the antique furnace. Steam issued from somewhere deep inside the cellar, sounding like the final breath of air escaping from a dying man. Years earlier, the men had abandoned the main sanctuary for the chapel, both because it was less expensive to heat and because they needed so little room for the congregation. As Golden took his worn tefillin and tallis from the dilapidated storage bin, he looked around and noticed that more plaster had floated from the high ceiling in the

damp and moldy chapel. Several of the bulbs had burned out, and much of the light in the room came from the dim, early morning glow that penetrated the grimy windows. For the next ten minutes, the regulars slowly drifted into the small sanctum. Shlomie handed the siddurs to each man who received a different book, depending upon his usual preference. Mr. Hyman came in a few minutes before the service and adroitly wrapped the tefillin on his arm and head. At 88, Mr. Hyman was the oldest member of the congregation, but he still made it to shul, morning and evening, to lead the daily prayers. Mr. Hyman began the service punctiliously at 6:30 with a mere nine men present, knowing he could proceed only so far without the full minyan of ten men. He paused a long five minutes until Mr. Levi rushed in the chapel exhaling steam and excuses. Mr. Hyman immediately began the Kaddesh—the prayer said for those who have died and that only can be said in Orthodox congregations when a minyan is present. “Glorified and sanctified by Your Great Name . . . ,” the men recited in Aramaic, the language of the Kaddesh. As the men recited the prayer, Mr. Stone leaned over to Mr. Golden and murmured, “It bothers me that we count Shlomie in the minyan. Rabbi Green never would have allowed Shlomie to be counted.” (Rabbi Green had been laid off by the congregation five years earlier.) “He’s a retard, you know.”


Mr. Golden gritted his teeth, shook his head and whispered, “Don’t say that, he’s autistic. He’s a good boy.” (Shlomie was 52 years old.) “Besides, we’d miss having a minyan most of the week if we didn’t count him. We need him.” “Well, we should close the shul anyway,” replied Mr. Stone. “What do we have, maybe 20 members? We can barely afford to turn on the lights. No one wants to daven here anymore. We have no rabbi, no young people.” “We can’t do that,” murmured Mr. Golden. “Our fathers davened here. Our boys were bar mitzvahed here. This is our shul…our home. Besides, what would we do about Shlomie and his mother? We can never let the shul close.” After the service ended, Mr. Golden went over to Shlomie, “Let me give you a ride home. Come on, I’ll take you.” Shlomie lived with his mother six blocks away. Mr. Golden took it slowly in the ice and snow, noticing that 32nd Street was even more decrepit and intimidating than when his family had moved from the neighborhood many years earlier. He watched Shlomie shuffle on the ice, then open the door to his mother’s row house. Shlomie did not turn around or say anything, not even a thank you, as he shut the door. Shlomie’s mother, Mrs. Cohen, needed a walker to move around the family’s creaky house and she rarely went out. Her husband, Mr. Cohen, had been a storekeeper who fled Poland in 1939. Years earlier, during quiet moments while tending his dry goods store, he read from the Talmud to Shlomie, who would sit at his father’s feet. Fifteen years previously, however, a stoke had left Mr. Cohen speechless and immobile. After three years of lying curled up in his bed at the nursing home, Mr. Cohen slipped away in the middle of the night when no one was around. The funeral was attended by the men of the minyan, Mrs. Cohen, and Shlomie. Mr. Golden tried his best to help Shlomie recite the Kaddesh prayer, but all Shlomie seemed to be able to do was hum the words. After a few frustrating days, he stopped trying to teach Shlomie.

Morning and evening, every day, Shlomie hummed the Kaddesh as Mr. Hyman led the prayers. Exactly eleven months after the funeral, Shlomie stopped humming the Kaddesh. No one in the minyan had told him that one only says the Kaddesh daily for eleven months. Mrs. Cohen sadly looked at her son. The television blared loudly as she cleaned Shlomie’s knee and applied mercurochrome. “Thanks, Mommy,” said Shlomie, not moving his eyes from the television. “Darling, what will you do when I am gone? Who will take care of you?” she whispered. The pain in her heart was almost unbearable, but it had been broken so many times that there was nothing left to break. The next day, a Thursday, the minyan started 15 minutes earlier. This was both to accommodate the extra time needed to read from the Holy Torah, which was read on Monday, Thursday, and Shabbos, and to enable the few men in the minyan who had not yet retired to get to work. It was always questionable whether they would have a minyan, and this was especially so when the service began early. Shlomie was waiting at the door at 6:05. At nearly 6:15, Mr. Stone drove up to the shul. “What’s going on Shlomie? Where’s Mr. Golden?” Mr. Stone put his hand on the door and it was unlocked. He pushed it open and they walked in. Shlomie went to the bookshelf and got Mr. Stone his book. Mr. Stone noticed that is was unusually cold in the shul and banged on the thermostat. By now, Shlomie had entered the chapel. Mr. Stone heard Shlomie utter a long, “Ohhhh.” Mr. Stone looked into the chapel and saw Mr. Golden lying on the floor, his hands clasped together as if in prayer. Congealed blood pooled around his head. The police said that Mr. Golden had been robbed. He had stayed behind the previous night after the evening prayers to close the shul, and the murder happened sometime around 7 p.m. The only thing taken from the shul was the pushke, the charity box that held the nickels and dimes given for the upkeep of the shul. 39


The next day, after Mr. Golden’s funeral, there were only nine men for the morning minyan. They waited a full halfhour and even made phone calls, but no one else came. The day after that, only six men showed up. Then four. Shlomie sat on the bench wearing his tefillin and his father’s tallis, staring straight ahead. Mr. Hyman waited impassively for the minyan on the cold chapel bench looking at Shlomie and the two other men who had arrived for the morning service and finally said to Mr. Stone, “We need to call a congregational meeting—tonight.” That night, following phone calls, seven people showed up for the congregational meeting to decide whether to close the shul. No one objected. With Mr. Golden gone, it was now impossible to maintain the minyan. Also, as if it stayed alive until Mr. Golden had perished, the furnace finally died. It would cost thousands to fix and no money was available. They voted to give the Torah scrolls to a suburban congregation and sell the building. Someone asked what would happen to Shlomie and his mother. The congregants grimly shook their heads. The next day, for the first time in nearly 100 years, the shul was shuttered. There was no minyan. Shlomie stood alone in the swirling snow at the locked door of the shul, waiting for the men who would never return. It was 6:30 a.m. and Shlomie was humming. He hummed the Kaddesh.t


Hors d’oeuvre
She has let many people feel The metal of her leg, Offering its cool touch As an hors d’oeuvre. Before the main course, She provides reasons As to why She walks up Each step one-by-one. She makes small talk, Caters to their questions: Does it hurt? What Happened? How old were you? And when the questions End, she fills herself With her own questions— Ready for future guests.

Previously published in the author’s book, The Morning Within the Dark.



Father’s doctor examines him at the nursing home His knee needs to be checked out, he says At 96 with creeping dementia, here a focus on his knee Brother and I roll him outside and down the lane To the specialist—hear what we know—cartilage gone— Doubt about walks in Dad’s future No reason for a hefty new bill Best to be off to McDonald’s For Dad’s favorite—cheeseburger and fries My friend once said, It’s not supper, it’s candy Since Dad could use the air, we decide to wheel him Along the highway dodging trucks . . . SUVs Thirty minutes of push and here’s the golden arches A Depression survivor he goes hard at his burger . . . every fry Back to the parkway with 210 pound Dad We strain with every swerve to safety Finally in sight of the home Dad hoots in a way Mom never heard, Ooh la la In those final days his call of happiness, Ooh la la, and for my weary brother and me Discovery Of a shared joy





hen I first got my driver’s license, I expected my life to take a turn for the better. I’d have more freedom, more fun. But my mom had other ideas. She assigned me to drive my nine-year-old brother, Alex, to his baseball game every Sunday evening. She expected me to be his buddy out on the field, too, because, she said, “Last year’s buddy didn’t work out.” My first reaction was, “You’ve got to be kidding! I’m not chasing after Alex in public. I mean, I know some of the other buddies. They go to my school.” “Danielle, what are you saying?” Mom’s face flushed and her eyes got that wet look. “You’re not embarrassed about your brother, are you?” I had a sinking feeling in the pit of my stomach. “No, no. I didn’t mean that. Really, I didn’t.” That’s how I got pressured into being Alex’s buddy at Special Challenge Baseball. And the job wasn’t easy. While the other volunteers were paired with kids who adored them and listened to their every word, I was paired with Alex, who covered his ears with his

hands whenever I gave him directions. Alex, who was always wandering off the field, and didn’t even seem to like baseball. So I was relieved when we finally got to the last game of the season, the socalled “All-Star Game.” In the parking lot of Fairhill Park, I gave Alex my usual talk. “Pay attention, OK? No wandering off tonight.” “Yeah, right,” Alex said without looking up. He looked so skinny in his oversize gray T-shirt and roomy shorts. His eyes were glued to his smart phone, which mom had given him last year so he could always keep his schedules, behavior plans and social skill prompts close at hand. But when Mom wasn’t around, Alex used his smart phone for other purposes, like playing video games. And that’s what he was doing now—playing a baseball video game that I had helped him download a few days before. It bleeped with every “out” and dinged with every “home run.” “Once the game starts you put your phone away,” I said. But Alex didn’t look up.

Fairhill Park was crowded that evening, with games being played on most of the seven fields. We were on our way to Field 6, the best field in the park and the only one with a real electronic scoreboard and floodlights that would turn on automatically when the sky darkened. But our trek there was slow, not only because Alex was focused on his video game, but also because he had cerebral palsy, which made his body stiff and difficult to control. He wore leg braces and his knees were permanently bent. With his eyes on the phone and not on his surroundings, Alex stumbled even more than usual. But that didn’t seem to faze him. He just kept his eyes on his bleeping, dinging phone. A few years ago a school psychologist had told Mom that, in addition to CP, Alex had some learning differences and attention deficits. But I always thought that if Alex could focus on the world the way he focused on a video game, he wouldn’t need any special ed. When we got to Field 6, most of the players were already huddled together, all wearing the same gray oversize Tshirts and unmatched blue caps. They were singing, “Take Me Out to the Ball Game.”


Without being told to, Alex slipped his phone into the pocket of his shorts and joined the group. And he didn’t space out during the singing, like he usually did. In fact, he sang, “One, two, three strikes you’re out,” at the top of his lungs. And when he walked over to meet me at first base, his limp looked like a swagger. Alex grinned at me, “We’re going to win tonight,” he said. “We’re going to clobber those guys.” I had never seen Alex so enthusiastic about baseball before. Maybe this last game of the season wouldn’t be so bad after all. I gave Alex a high five and we both watched Molly, the pitching buddy, place a ball on the tee. At these games, Molly was always super sweet and friendly. At least she was that way to the players with disabilities. But I knew Molly from school, where she was one of the popular girls, and a real snob. She always turned her bouncy blond head away when I passed her in the halls. Molly gave a thumbs-up sign to a heavyset boy who lumbered up to the tee. From the wooden bleachers, parents and aides cheered as they waved giant foam fingers and signs that read, “Every Child is an All-Star.” Most of Alex’s teammates cheered for the batter, too. But Alex was silent, his eyes trained on home plate. I was blown away by the focused look on his face. The batter tapped his bat on the tee, and the ball dribbled backward to the catcher. And the next thing I knew, Alex was cupping his hands around his mouth, yelling, “Foul ball!”

I burst out laughing. “Alex, you are too cute,” I said. There were snickers from the bleachers and all around me, volunteers were smiling. It seemed like everyone was smiling and laughing but Molly, who rolled her eyes at me. Then she turned back to the batter, who was circling home plate, looking confused. She placed the ball back on the tee and the batter tapped it again. This time the ball popped straight into Molly’s mitt.

But Alex wouldn’t stop. Throughout the inning, he called strikes, fouls and outs no matter what I did to try to stop him. I threatened to tell Mom on him, and he said, “Mom would be proud of me.” I promised to take him out for ice cream if he would just stop it, and he said he wasn’t hungry. Meanwhile the laughter around us had stopped, and all I heard were murmurs and groans. I was relieved when it was time to switch sides. Alex took a seat beside me on the bench and, in a high pitched and innocent tone of voice, he asked, “Why are you on my case?” “You’re asking me why? Don’t you realize how inappropriate you just were?” “But I was making all the right calls. Everyone else was cheating.” Alex punched the air, “Strike! Foul! Out!” Suddenly, I understood. I had never explained the obvious to Alex. I had thought that it was, well, obvious. “Listen,” I said, “we play a special game. There aren’t any strikes or fouls or outs in our game.” “There are too,” Alex shot back. “Three strikes and you’re out. Three outs and you switch sides. Those are the rules.” “This isn’t video baseball,” I said. “In our game, we don’t switch sides until everyone on our team has made a home run.” The look of confusion on Alex’s face told me that this was all news to him. He asked, “Then what are we supposed to do on the field, if we’re not trying to get the other team out?”

“Listen,” I said, “we play a special game. There aren’t any strikes or fouls or outs in our game.”

“Run to first!” Molly shouted. “You’re out!” Alex shrieked. There were more snickers from the bleachers, and I noticed that some of the volunteer buddies looked annoyed, especially Jason, the tall, shy guy on second base, who was in my English class. “Ok, Alex, the joke’s over now.” I said. “But, they’re letting that kid cheat,” Alex said, kicking dirt around first base. “Listen to me. Just stop making calls.”


“We cheer for the opposing team,” I said. “Our rule is that we cheer for everyone.” “No way! You’re lying!” Alex crossed his arms across his chest and fell silent. Then he began to watch the game, really watch it. And I watched him, and I saw how his eyes widened with alarm every time a player walked, ran, or wheeled around all the bases, as everyone on the field stood around and clapped. Alex had played Special Challenge Baseball for two seasons, but he was seeing it for the first time. When it was Alex’s turn at bat, he refused to leave the bench. He just wanted to watch. When it was time to switch sides again, I said, “Maybe we should just go home.” Alex shook his head no. He stood up and stumbled straight to first base, like a man on a mission. I followed behind. I hoped he understood now. I hoped he would play by our rules. Becca, a girl with huge brown eyes and waist-length brown hair, wheeled up to bat in an electric wheelchair equipped with all kinds of gears and straps. Becca was probably the most disabled player in Special Challenge. She was nonverbal and her movement was limited to her left arm. But she had such a sweetness in her face, that she seemed to be everyone’s favorite player. Mine too. I whispered in Alex’s ear, “Remember our rule: we support every player, even those on the opposing side.” Meanwhile, a buddy guided Becca’s good arm across the tee. The fans hooted and whistled, and Becca used her good arm to blow a kiss to the bleachers before pressing the joystick to glide toward first base.

I pictured myself in Becca’s place, gliding in my chair like a princess on a throne, to hoots and cheers, feeling the breeze whip my long hair, feeling all the kisses being blown back my way. I wondered if Becca knew why everyone was cheering. Maybe yes; maybe no; and maybe it didn’t matter. For Becca, maybe feeling victory and love was enough. This game was perfect for her.

“Nobody here knows the rules of the game,” he yelled again, as I tugged at him. “You’re supposed to be getting people out. Doesn’t anyone understand?” Everyone around us was just standing and staring. Finally, Molly broke through the circle and bent over Alex. “You’ve been showing very poor sportsmanship,” she said. “You’re supposed to support other players, not chase after them.” “That’s the stupidest thing I ever heard. You are so stupid,” Alex shrieked, kicking his better leg in the direction of Molly’s face. Luckily, he missed. Molly turned around and faced me. Her eyes had become seething slits. “Your brother’s ruining the game for everyone,” she hissed, loud enough for everyone to hear. “What’s wrong with you? Can’t you control him?” My face was burning. I imagined myself sinking into the sand and being buried there. And then an even weirder thought flitted through my brain. I imagined myself telling Molly that I didn’t know where she got that crazy idea that Alex was my brother, when, really, I was just a regular volunteer. I was just a regular high school volunteer working toward my community service graduation requirement. But I never really did that. Instead, I just stood there, frozen, as Alex struggled to stand up, muttering, “I don’t know what’s wrong with you people.” Once up, Alex lurched forward in an attempt to run, and he fell over, his face hitting the ground. He struggled up again, his face crumpled, covered with sand and wetted down by tears. This time he didn’t try to run. He dragged himself off the field, his eyes focused on the ground all the way. I followed, staying several feet behind. I was afraid if I came too close he would yell, or shove, and people were still watching us.

“Nobody here knows the rules of the game,” he yelled again, as I tugged at him.

But Becca wasn’t smiling now. Oh no—I had been so lost in thought that I had lost track of Alex when he scooped up the ball. And now he was following behind Becca, hitting her wheelchair and yelling, “Out! You’re out!” I ran over and grabbed him by the arm. “Stop it! Stop it now!” Alex shoved me so hard that I teetered over and landed on my back. Then he hit the wheelchair again. Becca groaned. By the time I got up, Molly had run over and wedged herself between Alex and the wheelchair, taking Alex’s hits, while shielding Becca the rest of the way to first base. The cheering was wild. “Becca rocks! We love you, Becca!” I ran toward Alex, “That’s it!” I shouted. “We’re going home, now.” Alex threw himself to the ground crying, “Nobody here knows the rules.” A circle formed around us as I grabbed his arms and tried lifting him up, but he resisted with all his might. It was hard to believe that such a skinny kid could be so strong.


He went past the hot dog stand and an empty field, and finally stopped at Field 4 where a large group of boys in white uniforms were playing baseball. Now that we were out of earshot of our teams, I quickened my step. I was going to tell Alex exactly what was on my mind. I was going to tell him how mean it was to hit Becca’s wheelchair and how badly he had embarrassed me. I was going to tell him that I would never drive him anywhere again, let alone be his buddy. But when I reached Alex, I couldn’t get the words out. He had his nose pressed up against Field 4’s chain-link fence, and I came over and stood right next to him, seeing what he saw: a bunch of boys, right around his age, in tight, gleaming white uniforms with matching white caps. They were chasing each other, sliding into bases, sliding into each other, and slapping each other on the back. Alex, I knew, was dying to be on the other side of that fence. I could see it in his face, in the way he clung to that fence. And I almost knew how he felt, because there had been times when I wanted to be on another side, too. In fact, it had just happened to me a moment ago. I sat down on a nearby bench and continued to watch Alex watching the life he wanted. It was dusk and the crickets were coming out, humming in a slow, sad rhythm. I asked myself, what’s the good of Alex finally paying attention to his surroundings, if he ends up hating what he sees? What’s the good of Alex understanding the rules of his game, if it makes him long for a game he may never be able to play? The sky had darkened before Alex came to sit beside me. He whispered, “I bet you hate me now.” “No—I’d never hate you.” “I just wanted you to be proud of me.”

“I know.” Alex removed his baseball cap and threw it to the ground. “I can’t do anything right,” he said. “Oh come on,” I said, picking up his hat, as I fumbled for words that would somehow make things OK again. “You do lots of things right. I mean, look how fast you learned video baseball?” Alex sobbed quietly for a few moments before he said, “I’m never playing Special Challenge Baseball again.”

The scoreboard had lit up too, and it read 35 – 36. That was Alex’s favorite part of the game, where he would hold out his arms, say “oooh,” and “aahhh,” and look straight into the light. Alex stood up beside me. “I want to go home, now,” he said. As we walked past Field 6 on our way to the parking lot, Alex squinted and began to stare straight into the floodlights. I had always wondered why Alex did that every week, and now I decided to ask, “What are you seeing in those lights?” Alex kept his squinted gaze steady as he said, “If you squint your eyes really hard and let things blur, it looks just like a real night game at a real stadium.” “But this isn’t a real stadium, this is Fairhill Park,” I began . . . Then I stopped myself. Alex and I had had more than enough of cold truth for one day. We had earned a little dreaming. I narrowed my eyes and looked into the light, and just as Alex had said, the colors in the field blurred. And in my mind, I saw that night game. I saw the crowds standing and cheering. “You’re right,” I said. “It looks like a big game at Jacobs Field.” “And the Indians are playing the Cincinnati Reds,” Alex continued, “and bases are loaded, and the pitcher winds up, and guess who’s at bat?” “Who?” “It’s me Danielle. It’s me!” “Let’s hear it for Alex!” Alex pumped his fists in the air. “Triple!”t

Alex, I knew, was dying to be on the other side of that fence. I could see it in his face, in the way he clung to that fence.

“I don’t blame you. You’ve grown out of it.” I said. And suddenly it came to me: the words that might actually make Alex feel better. “Next summer you should do something you’re really super good at—like maybe go to a technology camp. Or maybe a video game camp, if there is such a thing. How cool would that be?” “I don’t think so,” Alex said. Then he grew silent as he watched a group of boys pouncing on top of each other, celebrating a victory. He pointed to them. “That’s what I want to do,” he said. I looked from the pouncing boys on Field 4 to the slow, still group on Field 6. The floodlights had just beamed on there, making the whole field shimmer.





uring the ’60s, the adventurous spirit of Lynne Green wanted to soar. She was in her 20s at the time and decided to move from St. Louis, Missouri to Germany. During the span of only 8 years she returned to the United States, flew back to Europe, visited the place of her birth –Yugoslavia, traveled throughout Europe and places like France, Morocco, South Africa and Rhodesia, moved back to Missouri, and decided to overcome her shyness by taking a semester of acting. Being on stage was “painful” for her but it was there that she discovered a passion for directing. She graduated with a Bachelor of Fine Arts in stage directing from Webster University Conservatory of Theatre Arts. Four years later, she earned a Best Director award at the New York City International Directors’ Festival. While directing an off-Broadway show she began feeling fatigued and ill so she took a 6-week leave of absence to get some rest but she was never able to return. In 1991, when her youngest sister died leaving three young children, she chose to raise them. One year later she was diagnosed with rheumatoid arthritis. Improper medical treatment made the next seven years very difficult but she says, “I hung in there; inch by inch I struggled forward.” Things began to turn around when she was approved for a power wheelchair, received an accessible apartment, and began working with a vocational rehabilitation counselor who encouraged her to pursue photography. She was drawn to macro (extreme close up) photography of botanicals and says, “Their beauty was healing to me.” 46

One sleepless night she decided to review some rose images on her computer. A portion of one rose captured her attention so she “played” with the image by applying filters, cropping, and editing with Photoshop. “There was no deadline, no goal, nothing other than delight and discovery. It was a sublime freedom. I worked for hours…We got lost in each other, so to speak. Without warning, it appeared. My happy surprise…it is one of the purest artistic experiences I’ve ever had. I wonder sometimes if that translates to others, because the response to this image has been amazing.” Abstract Rose: Blue has been published, included in exhibits and is part of some permanent collections. The image will be featured on the 2014 Missouri Arts Awards poster, the invitation to the awards ceremony, the program, and the cover of the annual report. When fatigue, pain, and immobility entered her life she felt as though she had lost everything, even her identity, but she was able to creatively reinvent herself. Green has become a photographer and designer of jewelry. She says, “My primary passion is photography with a special bent toward digital, altered, and symbolic . . . I don’t take things at face value. I like layered realities. I like paradoxes.” Her work has appeared in many exhibits including Studio Altius’ “SEEN: St. Louis’ Best Photographers in 2011-2012,” Soulard Art Exhibit “Urban Architecture” 2013, and is currently on display in Bryn Mawr Rehab Hospital’s juried “Art Ability” exhibit through 2014. To see more of her photography and jewelry, go to

Lynne Green, Abstract Rose: Blue, digital photograph, 2011

Ron Hubbard lives with his wife in a beautiful, rural community at the base of the Eastern Sierra Nevada Mountains and enjoys depicting the scenic landscapes and splendors of nature that surround them. Ten years ago he retired from a position in ad sales for the local paper. Since then, he has tried to paint a little bit every day, to produce more artwork, and increase his visibility by showing his work to the public through private businesses, art shows, fairs, and his web site. Hubbard’s parents owned a photography studio when he was young and it was there that he “learned composition, lighting, and color.” He developed an early interest in drawing and describes himself as a self-taught artist who uses rich, vibrant color in much of his work. Although he enjoys creating with an assortment of mediums—pastels, watercolors, charcoal, oils and acrylics—he prefers to work with pastels and charcoal.

During a vacation in Nevada he saw a group of Native Americans and he asked if he could take some photographs. The striking, powerful image of Indian Chief was created with pastels from one of the photos he took that day. The artist has won several awards, was published in North Light Art, and was named Artist of the Year for a buckle design he created for the 30th Anniversary of the Bishop Mule Days Celebration. He enjoys bringing “happiness and pleasure” to those who view his art. To see more of his work, visit his web site:


Ron Hubbard, Indian Chief, pastels, 2009, 20” x 18”

In the weeks following the tragic events of September 11, 2001, Joney Jackson says she was “in a constant state of prayer,” when geometric images started coming to her and she began to draw them. With graph paper, a compass, and a pencil, she plotted out points and counted squares. After the line drawing was done, she laid tracing paper on top of it and taped it down. With map pencils, that she found in what used to be her son’s desk, she added color to the design. When she discovered high-quality vellum paper and oil pencils she began using them instead. The originals are 8.5” x 11” and she takes a few hours, nearly every day, to work on her drawings. Each image takes about 40 to 70 hours to complete. With the Yin-yang drawing shown here, she completed the outer part first and then added the symbol in the center because she says she wanted to “do something that had a meaning.”

She describes the time spent on her drawings as her “reward at the end of the day” for all of the work that she does on the 7.5 acres of land that she and her husband own in the small country town of Uhland, Texas. She does the mowing, trims mesquite trees, grows vegetables and says, “I see my property as my biggest work of art.” In addition to the geometric drawings, Jackson enjoys nature photography and takes most of her pictures on their property. She also enjoys woodcarving and says she inherited her love for wood from her great-grandfather who was a self-taught artist and woodcarver/craftsman. When Jackson was 7 years old her mother took her to the doctor and he diagnosed her as “mildly autistic.” Several years ago she heard about a doctor who specialized in autism and she went to his website to complete a question-


Joney Jackson, Yin-yang, oil pencils on vellum, 2012, 8.5” x 11”

naire and it confirmed what she already knew, that she is “definitely an aspie.” The site also helped her to learn a lot about herself and it has helped her husband to understand her better, too. She describes herself as a self-taught artist, photographer, woodcraftsman/carver, grandmother with asperger’s syndrome. Regarding her drawings she says, “I have been told by a math professor that I am using fractals and sacred geometry. Pretty cool since I dropped out of school at the age of 15 to raise my son…I heard a physicist say that simply looking at fractals or sacred geometry actually changes the energy of the room, and even repairs damaged DNA.” Her work is intriguing, detailed, colorful and has been included in two Texas government calendars. She currently has some work on display at a local real estate company in Austin,

Texas and she has been participating in arts and craft shows for 24 years. To see more of her work visit http://www. or click on the Youtube links below:




Locus Mentis
Locus Mentis examines the misdiagnosis of my daily episodes of paralysis as Hysteria. This changed when the condition showed up in my three-year-old son and was properly diagnosed in both of us as Hyperkalemic Periodic Paralysis with Mytonia. MLM VII. Italian American Gothic Get up you can walk. I thought you grew out of that. Why didn’t you say anything? What if there was a fire? I know you fainted in church last week. People talk. It was probably your period. Don’t change your pads so often. The Doctor said it would get better after you go away to college? Be glad you can go. I had to quit. It was the depression. I was the only one in the family with a job. You need to get a job pretty soon. Not just babysitting. Those clothes you want cost money. You go to dances. You can get up. Do you want to end up in a sanitorium? VIII. If I Could Choose a Mother If I could choose a mother she would be young in Paris in 1950. She jitterbugs along the Seine with a blue-black man. Her sleeveless Givency dress swirls; crinolines flying up and out. His shoes flash as he pulls her into his chest and swings her out again. Her hair loosens from her French twist. His eyes follow her hips as she sways. Her stiletto heels click the stone to the music that followed him here from Chicago. Someone takes their picture. She shows it to me when I am fourteen. See how I danced along the Seine with a handsome black man. You couldn’t do that here, but in Paris people were smarter. If I could choose a mother, that’s who she would be. Previously published in the author’s book of the same title, by PS Books, 2012.(Due to space limitations only two sections of this long narrative poem appear here.ed.)



Everyday Miracle
Chosen by Amazon, a new app showed on her Kindle screen. Travel, it read. Literature like vapor caught in a plastic net. And now: Travel. Where to go as she dissolved into chromosomes— crumbled and reassembled? She could ride this roadster anywhere, some place near where she could dare return on foot—a place with an aroma of home Her quivering hand swiped the perimeter finding no wires that might limit her cells flung out on a chancy bet. She picked; she clicked: a Library caper— six short blocks away. Arrived in an empty building. Nothing here but the odor of paper.


peRsOnAL essAy



ately an interesting topic for me has been influences, who affects us the most and how and why. Obviously family and close friends are huge influences. As a college instructor, I try to convince myself that I have the power to impact my students, at least for the fifteen weeks that we spend together. What really fascinates me, however, is the influence we can have on people we don’t even know. Last Wednesday after work, in a poorly lit and empty bar downtown where I go for a draft beer and a take-out chicken sub, the bartender told me something personal about her life, and mine, woven together in a way that I never realized. I have known Meghan about four years (exactly the length of time that I’ve been visiting this pub), and I know that before that time she dated a local restaurateur named Will. I never met him, but by all accounts he was a favorite among local folks—a jovial man, enormously kind to his patrons and employees. He died of cancer five years ago, and it’s clear that in many of the homes, coffeehouses, and bars in this small college town, the scar of his loss still itches. About halfway through my Smithwick’s, Meghan brought up the subject of Will. She had told me on previous occasions how they had lived and worked together, and been in love. The other day, though, she actually opened up about losing him and how difficult it had been to cope. As she recalled her depression and even the notion of ending her own life, I felt grateful for her courageous vulnerability.

Then she told me something that I am sure I will never, ever forget: during those devastating months, on the rare occasions she went out to the grocery store or downtown, she would often notice me, and although she had no idea who I was yet, just seeing me inspired her and bolstered her desire to continue on. In a small way, maybe an infinitesimally small way, my existence steered her away from thoughts of suicide. For my first thirty years living in this body, I never really considered how my being born without arms could affect other people. I thought it was all about me . . . overcoming the physical challenges involved, living independently, building a career, starting a family, just living a “normal life.” But my uncle once wrote in a card (for my high school graduation? college?) a message his dad used to repeat long ago, that the greatest thing a person can do is to have a positive impact on those around him, and he told me that I do this every day. I didn’t understand the note at the time, and simply saved it in my file cabinet at Mom and Dad’s—the cabinet with “Deep Purple” spelled out in stickers on the front, the cabinet containing cards from my sixteenth birthday party, and get-well notes from when I had back surgery as a young child. I cleaned out that file cabinet long ago, and now I wish I still had my uncle’s words. They would make more sense to me, now, as an adult. Several people in the last ten years have told me I am an inspiration, as they see me getting


around on my own, shopping on my own, or signing a check with my foot. With each compliment, I am becoming less surprised and better able to simply and graciously say “thank you.” Moreover, these statements typically come from complete strangers, so I take them as small kindnesses to ponder for a moment and then forget. Meghan’s words, on the other hand, affected me deeply. She is not a stranger; she’s a friend whom I like very much. She’s interesting, and funny, and somehow shy and talkative at the same time. She strikes me as one of those rare Old Souls (a term my aunt taught me years ago), and I seek out her advice from time to time. Although I didn’t say it out loud, my first reaction to what Meghan told me was, “Why now?!” Why would she wait four years to tell me this deeply personal story, or why would she decide to tell me at all? These seem like fair questions, but at the same time her reticence is understandable. People are afraid to share sad memories and sentimental thoughts; they worry that the emotion will be difficult to control, or that the listener won’t react well. Moreover, as many with disabilities will attest, there seems to be a constant concern about whether a mention of the disability or even a thoughtful compliment will be taken as an affront.

The problem with guarding our words, of course, is that we create barriers to intimacy and greater understanding. And when we are unwilling to appreciate the compliments kindly given to us, we limit our awareness of what we can do for others. I am so thankful to Meghan, who forced me consider the small chorus of strangers and past acquaintances who told me I have had an affect on them. If people with disabilities had some kind of club (obviously we do not), in our first meeting I would tell my fellow members that we have a unique opportunity to inspire other people, by simply living our lives. That’s all we have to do—no special achievement, or enviable charisma, or heroic work for a greater good—our mere existence can have an enormously positive impact on others. In an earlier period of my life I think I understood this, but figured it was a lazy way to make my mark on the world. Now I think about it differently. I am grateful. If there are other Meghans out there, other lives I can impact for a time, I know I need to embrace the opportunity.t




The Lamb
A child of five, sitting on a city bus, his mother beside him. His brother behind. At a stop, a man struggles aboard—not young, nor old, perhaps the age of a father –beset by tics that enslave his body, jerking his head violently sideways, his leg kicks out wildly, while the arm opposite does the same. He is barely able to climb the steps to get on and deposit his fare. Then walks past those seated; children giggle, the brother giggles, adults turn away in disgust. The bus is crowded; nowhere to sit up front, only toward the rear. The child stands as the man approaches, offers his seat, his mother tugs hard on his jacket trying to reseat him. The man spies that, pats the child gently on the shoulder. “Thank you,” he says, “but I see some open ones in the back.” He moves on slowly. There is wrenching pain in every step he takes. The child glares at his mother. To her credit she realizes her wrong; ashamed she looks out the window. But it comes too late, though. Much too late. The child’s heart walks beside that man . . . feels his anguish, through the barbs of his tormentors.


Curbing My Fear For Ginny
Across the expanse, the gray granite face intimidates me. As we near its base I sweep and scan, surveying left and right for the surest way up this daunting height— clearly an alpine assault. My falling fear knives through me. Though we are hauling no assistive devices, no climbing gear, my sherpa smiles. She smiles to ease my fear, places my right leg on level ground, makes certain that my footing is sound, shifts my weight, hoists my left leg, sets it down— the summit achieved, I release my frown. I relax and allow my mood to leaven on a Himalayan height of six inches? Seven!



Seconds (After Sherwood Anderson)
After apple picking when the Cortlands, Northern Spies and Romes are waxed and packed for selling in the stores and Granny Smiths become applesauce and Greenings are gone to pie those who know return to the orchard to the small, misshapen fruit rejected by the pickers and finger those bulges in the flesh where all the juice gathers then fill their pockets with these apples and sink their teeth in until all that pent up sweetness oozes down their chins redeeming the old fear that whatever is forbidden, marginalized or thrown away is most delicious.

Previously published in Ariel XXIV.


Stuart at Work
The sounds come from another’s body but the words are his own: poems elegant in their simplicity like a spider web against the moon or sumac in snow. Though enough in themselves, he sits eye level with the audience low in his wheelchair letting the muscles play over his face a Bosch rhythm, and curl into a wordless smile that lets you know he has sipped the spring, bitten fruit that you would pay an eye for.





inally! Sarah Whitehall paused for a moment to let her frustration ebb. The old geezer must have taken at least ten minutes. First he couldn’t make up his mind what he wanted, then he took forever to count out the exact change down to the last penny. She couldn’t help noticing Midge had served two other customers and was on a third. Sarah willed back the scowl that was trying to creep onto her face and turned to her next customer, a friendly looking, bright-faced young man. A college kid, she decided, judging by his faded jeans and the olive green backpack slung over his shoulder. Sarah didn’t like college kids. They could be so obnoxious sometimes. She pasted a smile onto her face, wondering irritably why he didn’t come up to the counter. “May I help you, sir?” He didn’t seem to hear her. He continued to study the overhead menu. “Excuse me, sir?” Sarah’s voice rose just a little. He started writing on a notepad. “Sir!” This time Sarah let her annoyance show. The line wasn’t getting any shorter. The woman standing behind him tapped him on the shoulder and pointed. “It’s your turn. Over there.” He started and glanced at the woman, then looked where 56

she was pointing. He hurried over to Sarah, grinning sheepishly. “May I help you, sir?” Sarah repeated, not entirely politely. He stared at her uncertainly for a moment, and she got the uneasy feeling he was trying to peer down her throat. “Uh . . . Kaaf motcha, please. And, uh . . . Pummin loaf.” His voice was flat, nasal, oddly high-pitched. He spoke a little too fast. Now it was Sarah’s turn to look uncertain. “Uh . . . excuse me, sir?” He hesitated, then repeated more slowly. “Kaaf motcha. Pummin loaf.” She stared at him blankly. He shook his head and, with an apologetic grin, turned back to his notepad. She felt her neck begin to redden. “Sir, what can I get you?” Ignoring her, he continued to write, then held up the notepad. She didn’t want to look, but he tapped it insistently. “Café mocha. Pumpkin loaf.” She sighed. “Will that be a large, medium, or small coffee, sir?” He gave her that questioning peering-down-her-throat look

again. She repeated her question, making little effort now to hide her impatience. He was still studying her mouth, his smile becoming forced. He pointed at his ear and shook his head. “Pardon?” Her voice rose. “What size do you want!?” He shook his head and handed her the pad and pen. Oh, for crying out loud! She grabbed them and scribbled. “Size? Large, medium, small?” He brightened. “Large, please!” Sarah busied herself with putting his tray together as fast as she could. Café mocha, large. Pumpkin loaf…Humph! Didn’t this kid know how to talk? She shoved the tray onto the counter in front of him, then rang up the bill. “That’ll be four dollars and eighty-seven cents, sir.” He was searching the counter behind the cash register. Not finding what he wanted, he looked at her questioningly. “How much do I owe you?” “Four eighty-seven!” Again he shook his head and pointed to his ear. “Say again. Please. Five what?” Sarah could feel the color rising all the way to her hairline. She glared at him, not sure what to do next. He leaned forward, but couldn’t see the cash register readout. He pushed the pad and pen at her. “Please write cost.” His smile was gone, and his patience seemed forced. She grabbed the pen and wrote the amount. “Thank you!” Did she detect a touch of sarcasm in his voice? He handed her a five-dollar bill. When she turned back to give him his change, he was already on his way to the condiments rack. She dumped it into the change cup beside the cash register.

Taking a deep breath, she turned to the next customer. Oh, no! A teenager! I swear, I’m gonna quit! This time she didn’t even try to look pleasant. Neither did the boy. His eyes were accusing. “Lady, didn’t you know that guy was deaf? He couldn’t hear you! Whatsa matter with you?” Terrence Moore grinned sardonically as he set down his tray and tossed his backpack onto the table. Smart kid. Two down, one to go. Professor Caldwell had sure come up with a good one for her Deaf Psych class, having students go into the community and pretend to be deaf. You were supposed to do it three times and try to cover a variety of scenarios. The idea was to get a feel for what it’s really like to be deaf in a hearing world. He glanced over at the counter. She was still there, redfaced and tight-lipped, avoiding eye contact with the kid as she made change. Too bad Terrence wasn’t a Secret Shopper. He’d love to mention her to her boss. Well, he’d enjoy writing his report on this one, anyhow. As the teenager turned from the counter, their eyes met briefly and Terrence gave him a friendly nod. Nice of him to speak up. Go figure, that a kid like that would understand this situation better than that old geezer.t




Silence in the Storm

A daughter’s poem to her Dad who has aphasia
You speak with more than your voice. You speak with hugs and kisses, smiles and laughter and you speak with your tears; these are your words. You have not taken anything away from me, on the contrary you have given me things I need for my life. You have taught me patience and compassion and most of all determination to get through the bad times. You are my hero for being so strong and making it look so easy. You have taught me that silence can be golden and to look for the rainbow even in the storm.



The Slur
Disability (according to 1. Lack of adequate power, strength, or physical or mental ability; incapacity. 2. A physical or mental handicap, especially one that prevents a person from living a full, normal life or from holding a gainful job. Have you noticed The only people who Use the word “disabled” Aren’t? “Disabled” refers to Computers and machinery Like the word “hero” Refers to comic book Characters. I prefer “gimp”— It’s me. It’s mine Like that mole Donned by Marilyn.

Previously published in, August 2013.





he trail lies quiescent, stretching out smoothly under my feet; the bumps and ragged edges worn away by hoof, foot, and paw. My stick sweeps through the leaves with crinkly swishes, like quickly thumbing through the pages of an old dry book from beginning to end. In the cool shade of the trees, the air tastes of soggy earth, sodden moss, and damp leaves, still wet from yesterday’s rain. My fingers clutching the stick tightly, shake from the chill. In the places where the sun warms my face, the breeze wisps the flavor of fall leaves, pine needles, and acorns softly into my nostrils. But no warmth returns to my fingers; they are chilled by more than the shade and season. As the path dips down, I slow, cautiously winding my way down the hill, hesitant at each footstep. Desperately grasping the stick, carefully sweeping before every forward motion, slowly taking each step forward and down; ready to pull back at any giving of the ground, fearful of a tumble or slide down the slope, afraid of losing my stick and my way, terrified of being lost in the darkness that is now my only vision of the world. My daily battle with fear, my walk through the valley of the shadow is here on this path at this time. For evening is coming and my four-hoofed helper, my eyes that gently nicker and swiftly run, needs to go into the barn, to be sheltered from the dangerous, uncertainty of the night. At last, finally the path levels. I have reached my destination. My stick hits a solid surface. The gate emits a low clang. My fingers race over its cold surface. I sigh in relief as I release the catch. The gate creaks as it swings. The catch snaps as I latch it. The gate, the field, my life is opened up again. I have won the battle for another day. I step out into the warmth of sunlight, the ground cushioned under my feet by grass cropped short by mighty teeth. The 60

breeze wafts the scent of my friends to me, musky, strong, and dark. They are close by. I whistle and a short second later the ground shakes beneath my feet as hoof-beats thunder through the air, reverberate across the earth, and echo back from the woods. I stand and wait. The noise stops. The ground stills. My hair is lifted by a mighty exhalation. A soft, wide nose tenderly nuzzles my cheek, while a much smaller one rubs against my denim clad thigh. My fingers slide up and across the sleek hide, under the coarse mane, over firm muscles until I feel the triple-stitched, nylon-strap halter’s roughness. I follow it down until the cool metal ring hangs at my fingertips. The lead rope snaps into place with a satisfying ping. The now unnecessary stick is folded up and tucked into my back pocket. “Barn” I tell Amos. He is my mighty companion, the pasture friend and protector of my new sight. She is Guinevere, a miniature forty-nine pound equine, my eyes and leader on shopping trips, commutes to friends and family; my brave little soldier who clomps along sidewalks, up stairs, onto buses and planes, into houses, restaurants, and stores. Here though he is the leader and she the follower. With her I have the power to walk or travel anywhere; with him I fly for he is a twelve hundred pound muscle-machine. We conquer the hill quickly, without fear or hesitation; Amos’s powerful strides carrying us up and over. Lightly, very lightly my feet touch the ground. I am carried along, a half dangling and flapping appendage, hanging from his halter. As we traverse the woods Amos slows, content now, knowing that the barn and his grain are nearby. The leaves skitter away from our robust steps. A squirrel scolds us as we disturb his nut-gathering. And as my fingers once again shake in the forests shade, I draw them back to rest against rippling neck muscles and warmth returns to them.t



It Was Like This: after the poem of the same name by Jane Hirshfield
First you were normal, then you were not. A healthy baby, then a label, disabled child: autism. Life went on. You were innocent; I was not guilty. You were my youngest; I had two others. I knew I was not a “refrigerator mother.” Your first smile, at two weeks. It wasn’t gas. Your brown eyes steady, into mine. Later, a cast, a caul, as your gaze glazed inward. First you had language, then you did not. I kept a journal. Then the pages were blank. First you connected. Then you detached. Who could we blame? Was it the water, was it the shots? Something I ate? Something I did not? Was it the mercury? Particles in the air? Beware, my sisters, beware, beware, beware. First it was one in twenty thousand. Now one in one twenty-five. Who gets to decide? The AMA, CDC, FDA all say: coincidence. I think that makes no sense. Why not study the Amish? Those who say no to the needle? What are we doing with these shots in the dark? All I know is, you had a spark, and now you do not.

First published in Verse Wisconsin 2011.



matthew lyndon wells

I remember his gigantic hands so delicate and soft as he would take my hand in his and my hand would suddenly shrink so tiny and small, a child’s hand. “You gonna play checkers with me today?” “Of course Cecil.” Of course, we will play checkers today you gentle giant. Cecil had his own chair made up which involved screwing a variety of two by fours to the legs until it fit him somewhat comfortably, a throne of sorts. As people noticed me holding court with Cecil, the stories would come out about how he could throw a chair a table a bed a man clear across any room and when Wassaic was a shameful secret institution, Cecil was clearly labeled a trouble maker as he would not hesitate to throw any man across the room and I can only imagine how many men it would take to subdue my friend. Because Cecil was big like Andre the Giant-big, and living in an institutional setting would frustrate even the most peaceful of men. Trust me on this one, I was a gentle man once institutionalized then again. So Cecil and I each day would find a nice quiet place to play the loveliest game of checkers, one in which there were no winners or losers, just survivors. Thinking back on it now, there it is a sweetness tinged with sadness as Cecil passed some time ago. And I have held many hands since then but none ever made me feel quite like I did when Cecil would take and shrink my normally man-sized hands down and ask me if I wanted to play checkers.



Kobbie Alamo is a writer living in the Laurel Highlands area of Pennsylvania. She has numerous publication credits including Hunger Mountain, the VCFA journal of the arts (June 2010), published by the Vermont College of the Arts; Red Cedars Review (1998), and Gray Areas Magazine (2000). Alamo, who is also a creative writing instructor, has won several writing awards including Pennwriters Best Fiction Award (2013). Her familiarity with deafness is based on the experiences of close relatives. Breanna L. Beauchamp earned a B.A. degree in film from The University of Western Ontario in 2013. Currently she is studying public relations in a postgraduate program. She writes in her spare time because “I want to see if writing is something I would like to do as I get older, and hopefully, wiser.” Joel R. Burcat is an environmental lawyer who enjoys his work and especially loves writing fiction. His publication credits include The Montreal Review (January 2013), Hobo Pancakes (June 2013), Ragnarok, the e-lit journal of Valhalla Press (Spring 2013), and Diverse Voices Quarterly (October 2012). Burcat says, “If I can get people to see other people differently than they did at first, I am happy.” John Thomas Clark was a retired teacher whose poems appeared in several publications. His most noteworthy publication was The Joy of Lex: Life with a Service Dog, a collection of sonnets written to acknowledge the great physical and emotional impact his black lab had on him, helping him find positive aspects to his disability. Sadly, Mr. Clark passed away in July, 2012. Barbara Crooker is a poet who is connected to the disability community through her 27-year-old son who has autism. Crooker’s book Radiance was the winner of the 2005 Word Press First Book Award, and Line Dance (Word Press, 2008) was the winner of the 2009 Paterson Award for Excellence in Literature; More was published by C&R Press in 2010. Her latest book, Gold: (Poiema Poetry), was published by wipf & Stock Pub in 2013. She has also won the Thomas Merton Prize for Poetry of the Sacred and the W.B. Yeats Society of New York Award. Crooker says “Everything I have to say, I say in my poems.” Jerry Hauser is a retired teacher who taught psychology and special education at St. Norbert College in Wisconsin. Now he is a dedicated and very prolific poet who works with many different poetic forms. Hauser’s publication credits include White Pelican Review, Tar Wolf Review, PEGASUS, The Clarion Review, Iconoclast, and Deronda Review.

Mark J. Havlik is a writer from Huntsville, North Carolina. His publication credits include Trajectory (Spring 2012), Washington The Magazine (March/April 2013), and South Florida Arts Journal (Spring 2013). In May 2013 he won the Pamlico Literary Contest 1st Place Prose Fiction Award. Havlik’s disability is severe depression. Kurt A. Hoffman received a Ph.D. in animal behavior from the University of California at Davis, and is currently Senior Instructor and Director of Undergraduate Studies in the Psychology department at Virginia Tech University. Hoffman often writes about his disability, phocomelia, (which for him entails the absence of arms and incomplete development of the right leg), especially focusing on how he feels about his disability and how others react to it. Jennie Chapman Linthorst is the founder of LifeSPEAKS Poetry Therapy. Her poems have appeared in Sanskrit Literary Arts Magazine (2012), Edison Literary Review (2012), and Forge Magazine (2011). Her book of poems, Autism Disrupted: A Mother’s Journey of Hope, was published in 2011. Her second book of poems, Silver Girl, was published in 2013 by Cardinal House Publishing. Linthorst says, “As a poetry therapist, my work is about using writing for healing.” Laura McKittrick is an information technology specialist from Blue Springs, Missouri. She received an M.A. from Gallaudet University in Washington, D.C. in 1979. Her essay, “Doorways,” was published in the University of Kansas KUAF Newsletter. McKittrick is deaf with cochlear implants and is also visually impaired. She says, “I’ve found that there are very few things I can’t do when I put my mind to it. And I most appreciate and enjoy people who treat me like a normal person.” Kimberly Sue McLaughlin is a writer and artist who lives on a seven acre lot of land on a private road in a small southern Maine town. She lives a life of solitude choosing to forego all television, and a landline phone. She says, “My internet connection and cell phone operate infrequently on sunny days and not at all on stormy ones. But the wildlife, solitude, and natural surrounds more than compensate for the lack of ‘modern life’ conveniences.” MaryAnn L. Miller is a poet and artist from Clinton, New Jersey. Her poems and art have appeared in Fox Chase Review (Winter 2013), Philadelphia Poets Journal (2013), and Wordgathering (September 2013). Her first book of poems, entitled Locus Mentis, was published by PS Books in 2012. Her second collection of poems, as yet unpublished, is entitled Tell. Miller’s disability, hyperkalemic periodic paralysis with myotonia, was misdiagnosed for 30 years. Her parents and doctors thought her illness was entirely psychosomatic. 63

Greg Moglia is a veteran of 27 years as Adjunct Professor of Philosophy of Education at New York University and 37 years as a high school teacher of physics and psychology. His poems have appeared in more than100 journals in the U.S., Canada, and England, including Southern Humanities Review, English Journal, Main Street Rag, Common Ground Review, Chiron Review, and Bellowing Ark. He is a six time winner of the Allan Ginsberg Poetry Award sponsored by the Poetry Center at Passaic County Community College. Rebecca Molloy is an attorney from Woodbury, Minnesota. She started writing disability fiction as a young girl after reading Heidi and The Secret Garden. As an adult, she writes more realistic fiction about disability with no miracle cures, instead focusing on “how a person copes and maintains a sense of self-worth in the face of prejudice.” Lenore M. Montanaro is a full-time law student who expects to complete her J.D. in 2015. She is also a published poet. Her book, The Morning Within the Dark, was published in August 2012. Montanaro’s brother, John, passed away at 19 due to leukemia. Prior to his death he had started a fund donating money to a veterinary hospital in Rhode Island for pet owners who do not have adequate finances for cancer treatment for their pets. Montanaro donates all the proceeds from her book to continue this veterinary fund in honor of her brother. Montanaro is also a cancer survivor and an above-the-knee amputee. Michael Northen edits Wordgathering, A Journal of Disability and Literature and is co-editor of the anthology Beauty is a Verb: The New Poetry of Disability. For fourteen years he has facilitated the Inglis House Poetry Workshop for writers with disabilities. He is currently working on an anthology of disability short fiction. Sandy Palmer studied graphic design at The University of Akron and is a freelance artist working in colored pencil, marker, and pen and ink. She contributes to Kaleidoscope Magazine as a writer of visual artist profiles and an illustrator, having joined the staff as art coordinator in 2002. Palmer is a full-time graphic design specialist at United Disability Services. Sharon Peerless lives in Beachwood, Ohio and is a volunteer advocate for people with developmental disabilities. Her personal essays and short fiction have appeared in Chicken Soup for the Parent’s Soul (2000), Ohio Writer’s Magazine (2006), and Stories for Children Magazine (2008). Peerless has three children, twin adult sons who have autism and a teenage daughter who has Down Syndrome. She says, “seeing the world through the eyes of my children has given me an alternate perspective that influences my writing.” 64

Peter L. Pingerelli is a scientist with a Ph.D. in biophysics. He is currently a professor at Western International University, Department of Behavioral Sciences and Research. Professionally, he has written many articles for scientific journals. Pingerelli says, “I advocate reliance on one’s own abilities and uncovering the potential of those abilities….” C. R. Reardon is an assistant in the Sports Information department at Salem State University in Massachusetts. His poems have appeared in Greater Boston Intercollegiate Poetry Festival Chapbook (2009), Folly Magazine (June 2012), and Breath and Shadow (October 2013). Reardon uses a wheelchair due to an inactive brain tumor. He says, “I am a determined student of writing and literature . . . . In my poetry, I try to portray the psychological and concrete elements of being in a wheelchair.” Michael Smith is 77 years old and resides in an assisted living facility in West Chester, Pennsylvania. He has Parkinson’s disease and pseudogout. He uses a wheelchair and his speech and hearing are declining. Most of his career has been in education, teaching English to middle school children and performing administrative duties. He has been married twice and has four grown children. Alison Stine is a former Wallace Stegner Fellow at Stanford University. She is the author of two books of poems, WAIT, winner of the Brittingham Prize (University of North Texas Press, 2011), and OHIO VIOLENCE, winner of the Vassar Miller Award (University of Texas 2009). Her essays and poems have appeared in Kenyon Review, Poetry, The Paris Review, and New England Review. Stine is a recipient of the Ruth Lilly Fellowship from the Poetry Foundation. She is currently a Ph.D. candidate at Ohio University. matthew lyndon wells is a poet and musician from Kingston, New York. One of his poems was published in Chronogram (August 2011). He has published two books of poems: Me and Him Blind Outside, a chapbook (December 2006), and Burning Out the Past to Incinerate The Future Present (self-published, 1998). His disability is a multiple diagnosis of mental illness – major depression, borderline personality disorder, and panic-anxiety disorder. “My work, over the years, has been the only reliable constant in my life, a liferaft as I am drowning, a stability to hold fast to during the harshest storms . . . .” Gail Willmott received a B.A. in English and an M.Ed. in education, both from the University of Illinois. A Kaleidoscope Magazine staff member since 1982, Willmott became editor-in-chief in July 2003. She says, “I am passionate, some would say obsessive, about my work with Kaleidoscope.

Kevin White, Jupiter Moon, 2009, computer art, 8" x 10"

Kevin White, Butterfly Cocoon, 2011, computer art, 8" x 10"