2001 Graduate Nonfiction Winner
Lessons from the Unlikely
When I was young, my mother read the Pied Piper to me. There were rats, a fat mayor, a piper dressed like a jester with bells and a flute of some sort. I know my mother made her way through this story several times. It is the ending that I remember clearly. The piper comes to the mayor for payment and, when he is refused, leads all the children out of the village and into a secret entrance in a mountain. All the children save one. He has a crutch. He wants to accompany the children into the side of the mountain, but he is too slow. The last picture of the story is of a little boy who sits, leans on a crutch and cries. It is haunting. It is at this moment I feel the Pied Piper as evil as the mayor, as filthy as the rats. He allows someone to be left behind. To be left behind must be horrible.
In the 1800s at The Royal Earlswood Asylum for Idiots in England, Dr. J. Langdon Down began making observations of patients who appeared to have similar physical characteristics—who seemingly belonged to the same family. He observed these features as straight thin hair, small nose, almond eyes. He noticed that roughly 10 percent of the total population he observed possessed these characteristics. He termed them “Mongolian idiots” because their physical characteristics seem influenced from Mongolia, a region of east central Asia. Down's observations earned him a diagnosis given his name: Down Syndrome.
He writes in his Observation on an Ethnic Classification of Idiots in 1866, “I have for some time had my attention directed to the possibility of making a classification of the feeble-minded, by arranging them around various ethnic standards...” He also notes as comparison examples of the “Ethiopian ....... presenting the characteristic malar bones, the prominent eyes, the puffy lips, and retreating chin.. .The wooly hair has also been present, although not always black, nor has the skin acquired pigmentary deposit. They have been specimens of white negroes, although of European descent.” His article appeared in the Journal of Mental Science in 1867, and his views are elaborated at much greater length in a book entitled Mental Affections of Children and Youth in 1887.
As hard as this information is to read, it would be doing Down a disservice not to mention that he used these arguments to prove some sort of continuous race, evidence of our human connectedness, evidence of common origin which randomly reproduces certain characteristic across the world. He promoted the thought that all humans were created equal. In the I 800s, Down presented the institutionalized as compassionately and humanely as perhaps anyone of his generation. He observed that those he studied, those later diagnosed with Down Syndrome, were “...cases which very much repay judicious treatment.” He noted several common personality traits: pleasant disposition, sense of humor and the “considerable power of imitation, even bordering on mimicry.’ He noted the short life expectancy that was “far below the average, and the tendency . . . to the tuberculosis, which I believe to the hereditary origin of the degeneracy.” He was wrong about the tuberculosis and it would be nearly a hundred year before the true cause of this condition was known.
In June of 1993, my husband and I have our first child. He is born in the dark of early morning—after a long and difficult labor which begins a little before midnight on June 21st and ends at 3:21 on the 23rd. The room hushes, not all at once but slowly, when he enters the world. His mouth is suctioned and he is handed to the nurse The doctor turns back to me, smiles gently, looks at me for a long time and then not again. The nurses glance at one another and proceed. I think him lovely, but the silence in the room tells me something. I watch as the nurses open his hands and look at his palms. They search and find a single crease, the transverse palmer crease, in his right hand. The whisper. A pink and blue stocking cap is placed on his head. He’ wrapped in a blanket and is received by Tim, my husband. Tim’s hair is a mess, his eyes moist, he smiles. He cradles our baby boy, proceeds to quietly and gently celebrate. I feel the guilt of an unthankful recipient, someone who has perceived the flaw in a presumably flawless gift. I lean to him and say, “Tim, I think something is the matter. He replies, “Nothing is the matter; he is perfect.” I search the room again. I notice they have left us. We are alone when we name Peter.
It is November of 2000 and cold. I attend the TARC annual meeting and award banquet. As president of the operating board, I dress the membership, highlighting the successes of the year 2000 for this organization serving people with developmental disabilities Shawnee County, Kansas. TARC stands for Topeka’s Association of Retarded Citizens. It employs almost 200 people and serves over hundred individuals with delays in mental and/or physical development. Most people refer to it now as TARC because the word “retarded” has become ugly. It has been thrown around too many school yards, directed towards too many in conversations where it is considered a humorous put down or a put-someone-in-their-place phrase. I hate to hear it used in these ways, but I use it to describe my son. People know what it means, what I mean when I say it. My reasons are practical and not callous. At the same time, I understand strong feelings can accompany something as powerful as a word that has begun to take on different and more sensitive meanings. I was once told the word “handicap” derived from the practice of the poor and often disabled begging for alms with cap in hand. “Retard” came from the musical term “retardation,” which means to gradually slacken the time of tempo. When the word “retarded” was introduced it was considered a beautiful term bestowed by a cultured society referring to a mental lessening of gain or progress, delay, slowness.
My son, Peter, hasn’t received early intervention services at TARC since he was three. He is now seven and our three-year-old is almost ready to pass him up in size. He is tiny, one of the reasons it has been easy to integrate him in a kindergarten classroom of five year olds. He is thin, except for his belly. It protrudes slightly due to lack of muscle tone, his stomach muscles not being strong enough to hold everything in nice and tidy. As a result his torso is the shape of a kidney bean: a bit of an arch in the back, fullness in the front. His eyes are a mixture of blue, from me, surrounded by tinges of brown, from Tim, which have been framed by little golden rims since he was a toddler.
After Peter is born, he remains in the Neonatal Intensive Care Unit receiving medicine to rid his lungs of fluid. I spend my days at the hospital. The nurses encourage me to take a break, get some fresh air. I am not allowed to feed him yet; his stomach receives my milk through a tube inserted in his nose. Yes, they all agree that a walk will do me good. I exit the hospital to the rain and drizzle that plagues our Kansas summer of 1993. I am drenched by the time I cross 10th street to the Topeka and Shawnee County Public Library. I make my way to a computer, which the librarian has told me is dedicated to accessing a medical database. I begin printing out everything I can on Down Syndrome. As the pages pour from the printer I begin to read. Most of the information is outdated, though I don’t realize it at the time. One of the first facts I stumble upon is a 1975 poll revealing that 77 percent of American pediatric surgeons favored withholding food and medical treatment from infants with Down Syndrome, leaving them to die rather than sending them home with parents or families. I leave the library and a busy printer still spitting out the dreadful stuff. I make my way back across 10th to the hospital—to the neonatal intensive care unit. I enter soaked and winded, stutter when I tell them I have decided come back early. I decide to stay with him at the hospital as much possible.
In the days following Peter’s birth, I remember that during our engagement Tim had told me that he had always thought he would one day have a child who would be “slow.” He wanted me to know this, felt the disclaimer necessary. I think it is ironic, but perhaps no more so than the fact that Down’s grandson and namesake was born with Down Syndrome. Records of the grandson John describe him as a lovable person and a good billiard player.
Approximately two weeks after Peter is born, I receive the confirmation that he has Down Syndrome. I take the call from a phone in the Neonatal Intensive Care Unit of Stormont Vail Hospital in Topeka where Peter has been relocated on his third day for a heart condition and fluid in his lungs. I ask for a copy of his karyotype, the picture of his chromosomes which confirms the diagnosis, a word recently added to my vocabulary. It will be sent to me.
Tini and I met in college in the late 1980s. Then, he looked 15 at best. He has matured and now looks at least 20. At first I wondered what to make of him. He was lanky and thin, possessing an unusual amount of energy and talking in a rapid southern dialect. Long before we began dating he began walking with me at nights, around the brick lanes that circled the campus. I stared in disbelief as he repeatedly fell into hedges or tripped over curbs, once rolling down a hill. Later he would tell me how nervous he was during those years of walks. I should have been an indication to me of his attentiveness to a fault. From the very beginning he was willing to forfeit some awareness of his own two feet and various pedestrian obstacles for my sake. But back then I just thought him clumsy and told him so on several occasions.
I have since pocketed dozens of these attentive examples in my memories: Tim rubbing baby lotion between each of Peter’s toes; his waking each night to change baby diapers and still waking when one of the kids has a bad dream or needs a drink of water. There are the nightly foot rubs and the surprise trip to Chicago to attend a Norm Rockwell exhibit. He trims my father’s trees and hedges, runs to the store for my mother—is even attentive to the neighborhood kids. More than once I have opened my front door to a group of kids who ask me, “Can Tim come out and play soccer?”
I sit in the lobby outside the Neonatal Intensive Care Unit, a blue room with faux antique chairs with high backs and carved wooden legs. The furniture seems out of place next to the stainless steel sink that runs the entire length of the wall to my left. Instructions on how to sterilize your hands to the elbows and directions to the sterile gowns are provided above the sinks. All visitors must wash before entering the unit, which is just past the electronic glass doors.
People want to know what caused it and whether or not it runs in the family. My aunt visits me at the hospital and tells me, “Well you know—is pregnant now I sure hope she doesn’t have one.” I tell her I think it is unlikely. I try to be reassuring.
Peter remained in the hospital for almost three weeks. I arrived home from days spent with him to find my house clean, dinner fixed and warm on the stove. Most of my family and friends proved invaluable. I found their questions and comments timid and sincere and careful I was grateful and they were lovely. Now I don’t remember the specifics of the questions, but I do know I replied by regurgitating all the facts I knew, the facts that connected me somehow to the baby in my arms. I told them that approximately one in every 800 babies is born with Down Syndrome. I told them the chances of having a child with Down Syndrome increases as maternal age increases. A women aged 40 has about a 1-in-100 chance of having a child with Down Syndrome. My chance of having a child born with Down Syndrome in my early 20s was about a 1-in-1450 chance. I sketched out dozens of illustrations of chromosomes, feeling relieved and gratified as I drew them. With a pen or pencil or crayon on a piece of scrap paper or on the palm of my hand, I drew and drew like a mad geneticist. I, who blush so easily, attempted to give all who desired access to the explanations of the very personal, and now very public, conception scenario.
I have always been a bit of an art enthusiast. As I begin to educate myself on Down Syndrome, I notice and store the bits of information regarding Down Syndrome and its portrayal in art. What did societies used to do with people like Peter, people who were different? What place did they find in culture? Their representation in art might tell me. I search for evidence of compassion or tolerance. Finding examples would be treasure to me. I want to know if we were capable of seeing past the skin. I search for the exceptional specimen in a painting or even a photograph so I can examine the artist’s choices, explain and reveal their desires, name those things worthy and sought after. I take great delight that some of Velazquez’s favorite subjects were the dwarfs in Philip IV’s court who he portrayed full of human dignity.
Several Middle Age and Renaissance artists are rumored to use children with Down Syndrome to portray the infant Jesus. I can find no definitive truth, no scholarly articles or art criticisms which address this claim. I say there is no definitive proof in writing, but there are the paintings themselves which one can view and then decide. Bellini, Brueghel, and Reynolds have been cited in various Down Syndrome publications as users of models with Down syndrome, but it is the works of Andrea Mantegna that are particularly convincing. His Madonna and Infant paintings are so psychologically connected, a child wrapped in the arms, the body, of a mother who seems to protect it from all angles. It is a child who is vulnerable that Mantegna presents. It is not this portrayed vulnerability alone that makes me wonder, but the characteristics, the features of the infants of Mantegna. It is in the almond shaped eyes, the open mouth with tongue slightly protruded, the placements of fingers and toes that appear respected and reproduced from a child with Down syndrome.
I receive Peter’s karyotype in the mail. I have waited a lifetime for it. I look at his chromosomes lined up and numbered on paper, so tiny, so powerful. The three chromosomes labeled “21” are a quarter the size of chromosomes one through twelve, and I think them rather sumo-like in their stance. The bottom half of the X appears like two thick stubby leg-like appendages, slightly spread. But the top half contains almost no genetic material at all, looks like a set of antennae topped with tiny clenched fists. I read that these “fists” have a magnetic quality which is possibly what causes the chromosomes to not separate correctly. I place the karotype in Peter’s baby book, next to the sonogram images which are strangely similar: a tiny baby with clenched fists.
I become crazed with trying to understand and explain this genetic occurrence. My husband and I teach ourselves basic genetics, begin to understand how this small amount of extra genetic material on chromosome 21 affects each of Peter’s genes. This chromosome starts a progression of developments which are eventually recognized j in the palm of his right hand, in his facial features, upwardly slanting eyes, small ears, button nose, mouth seemingly too small for his tiny tongue, teeth, head shape, the low muscle tone, the compromised respiratory system, tightly noted but wrongly diagnosed as the source of the syndrome by Down in the 1800s.
Tim and I take our baby home. He never cries so we string bells across his bassinet so we’ll hear him when he wakes and squirms. We train ourselves to hear little bells which jingle in whispers. We tune ourselves to them, hear them from anywhere in the house.
My job working with the long-term unemployed expires with its grant funding, five days after Peter is born. After he is home, I make a trip to the unemployment office to apply. It is located on the floor above the one I occupied just a few weeks earlier. I had shared a break room with the people who would be processing my papers. It is awkward. News has spread of Peter. They pass over my paperwork for close to an hour. It sits in the rack and I watch as it is pulled out and my name is read on the application. My acquaintances nervously scan the chairs for sight of me and quickly put it back. I assume they are now appealing to the floor manager to process my papers. She rarely processes papers. She wears big round glasses and stiffly says, “Well, you’ve certainly lost some weight since we’ve seen you last.” She turns red, wipes her palms on her dress. Peter is never mentioned and I feel sick about it.
As I exit the building, I almost knock over a women taking a smoke break. I recognize her face but don’t know her name. She pulls the cigarette from her mouth and says, “Hey, we heard about your little guy and we’re rooting for you.” I mumble some sort of thanks and hurry away as I begin to cry. What I really want to do is run and throw my arms around this lady. I want to reach out and grab her words, which have already scattered into the air. I want to press them in Peter’s baby book, keep them forever. I remain deeply indebted to those brave enough to address my having a child born with a disability. Whether they did so tactfully is not my concern. It is their efforts and courage I cherish.
After Peter is born an acquaintance tells me, “You know it is really too bad you and Tim can’t have any more children.” This is news to me. I wonder if my ovaries have betrayed my confidence, told her something that even I am not privy to. Then it dawns on me. After our having a child with a disability it is assumed we are done. She might have just as easily said, “Folks, I think your turn is up.” In a sense, Tim and I together are considered a bit of a liability. Nonetheless, we continued to have children to the world’s dismay and to the disapproval of a few.
Both of us wanted brothers and sisters for Peter, and it was interesting to come across the writings of Down which described his own desires. The patient, he said, “should be rescued from his solitary life and have the companionship of his peers. He should be surrounded by influences of art and nature, calculated to make his life joyous, to arouse his observation and to quicken his power of thought ...”
Peter is the only boy in a house full of girls. ‘What we have to put up with,” my husband tells him. “We need to stick together,” my husband tells him. But he is lost to us women—our influences too strong. He begs for fingernail polish when we pull it out to do our nails; he is one of the loveliest in the long gowns worn during dress up. (Gowns are more fun than trousers so plain, so ordinary.) My husband is fit to be tied, tries to instill in him the right and privilege of being able to pee standing up, still Peter insists on sitting. I am thankful.
By the twelfth century, paintings were used as the foundation for interpretation of higher spiritual truths for the non-literate and perhaps these values were making themselves apparent in content as well as subjects. Mantegna is known for historical accuracy with a glimpse of bitter reflection. Yet he is known even more for the extreme interpretations which shed light on qualities that are in turn tragic and ironic. If Mantegna possessed a social awareness unequalled among Renaissance painters, a compliment he is given freely, it is not so difficult to believe that he would have chosen children with Down Syndrome to portray religious figures in art. Children with Down Syndrome are often identified, naively I think, as angels or as possessing standards of divine beings. I agree with neither. However, people are driven to locate us in crowds, to make their way; out of their way, to tell us about how they are related to someone with Down syndrome, to tell us stories of their experiences with people with Down Syndrome. They relay how they identify something special and unique—we have identified it ourselves. It is obvious that these children would be ideal models, perhaps not physically, but spiritually, for Christ.
Tim and I have noticed that children with disabilities are not chosen to sell toys, are not in commercials, are not the subject of Anne Geddes portraits. They are scarcely represented in any visual art form now. It is only after Peter that I discover the specifics of the subject in Andrew Wyeth’s painting, Christina’s World. It is often perceived as a romantic picture of a young woman lying in a field of yellow and scattered flowers. It is actually Christina Olson, a neighbor of Wyeth’s in Cushing, Maine. She is middle-aged, paralyzed by infantile paralysis, stranded by the family burying ground. She is alone and unable to get back to her house, small and brown in the upper right hand corner of the painting. It is a picture of abandonment and despair, but one would never know. So far are we removed. We see vulnerability so seldom we have difficulty recognizing it. It is frightening for me to think that one day we might lose our appreciation of the weak, lose the sense that our own strengths are to be used for others, assume that our abilities are only for our good and for our gain. It seems that the weakening of this part of our awareness will result in the recession of our collective compassion. I imagine it glistening on the corners of our thoughts, then proceeding on the furthest spots of our memories. It will blink and teeter, will extinguish and be lost, forever.
In the early 1970s, photography had found subjects in people with disabilities. These photographic essays were largely extrapolated from institutions which had separated us; hid from us our children born with exceptions. In 1970-71, Diane Arbus published an untitled series of photographs in Aperture. They feature the tenants of a mental institution, many with Down Syndrome. Many of the photographs appear to be taken around Halloween. Women in fancy hats and bonnets carry handbags, thick stockings cling around their knees. They smile in front of brick walls which feel of institution. Another photograph appears to be of some sort of parade, a woman in a nightdress, determined and grouchy. She faces forward and marches, her hand clasps a young man with Down Syndrome with a painted handlebar moustache who looks at the camera. A woman in a wheelchair holds a mask, a witch I think, over her own face.
I can’t figure these pictures out. They are surreal and feel itchy on my eyes. Frankly, they are frightening and I wonder what are those women in swimming suits doing out on the lawns of a mental institution facility? Isn’t it October? Is this Halloween or is it something else? Something scarier? Do these pictures document a collection, an amassing of difference, of so much difference it created a different world? Such a different experience. It leaves me not knowing at all how people of this time regarded those with disabilities. I think I begin to see the separation—of not knowing where these people go. It feels like a circus.
A few years ago I read that Arkansas state health director, Joyce Elders, in testimony before Congress in 1990, testified her support for abortion of Down Syndrome fetuses as public policy. “Abortion has had an important, and positive, public health effect . . . the number of Down Syndrome infants in Washington state in 1976 was 64 percent lower than it would have been without legal abortion.” And I read it again to be sure that I understand it right. The truth of the matter is so casual, so hidden in the middle of public policy that it is easy to breeze right over it, not realize just what Joyce Elders was proposing, supporting. It feels like a moment in the movie Life is Beautiful, where people at a dinner party are discussing mathematical story problems being taught in the schools. The dilemma presented to the children, relayed through their dismayed parents, is something like: If 600 Jews are sent to Auschwitz and 325 Jews are sent to another concentration camp, how many Jews will be killed in the concentration camps? When the movie’s heroine agrees that this is horrible, the others in the party agree with a statement like, “Yes, how can my child be expected to do these advanced mathematical calculations, he is only in 2nd grade?” And there it is. The ugly truth about what Germans thought of Jews in the I 940s. And there it is. The ugly truth about what my culture thinks about people with Down Syndrome in the 1990s.
People often ask me if we knew Peter would be born with Down Syndrome. It is now possible to tell all sorts of things about unborn children. People can screen for gender and a variety of diseases. We check for nothing but a heartbeat. It is enough for us. And when we are pregnant with each of the others, we are always offered the “opportunity” to find out about our children. We decline.
It seems a grand pursuit, to explore our origins, to contemplate our beginnings, to speculate—we, evolved of goop and goo, we, formed from clay. This desire is one of many, to examine ourselves closely, our makeup. It is in some sort of self-interest that we question where we came from and how we came from it. We seek what the world looks like up close, the visuals of our smallest components. It begins as a child with a fascination with those rare parts, in between the toes, elbows, the insides of the nose. These odd and uncoordinated exercises of examination are the precursors of moving closer.
In sixth grade I study protozoa, small single-celled aquatic organisms, a phylum of the animal kingdom, reproduced by binary fission. Single-celled organisms we are not. We are a collection of sorts, of different sorts of cells, which differentiate somewhere in the evolutionary process of the womb, become white blood cells, red cells, bone cells, brain cells. Mr. Kralik introduces my sixth-grade class to the proper care and use of the microscope, shows us how to mount specimens on our slides carefully to avoid air bubbles which will complicate our observations. After all is ready, a drop of pond water is placed on the slide. I move my eye to the lens of the microscope. I am immediately zoomed in for a closer look to a world newly discovered. I feel like Columbus. This protozoa is akin to the parts of me that I cannot see, do not see, all that is there in the layers underneath my skin.
I am reminded of Dr. Seuss’ Horton Hears a Who, and I imagine my new found protozoa a Who at heart. He is trying to communicate with me; he senses my observations, responds by squirming. He, She, It wants to say something but has no mouth that I can see, has nothing by the way of skin or features, though it does somewhat resemble an ear. This is one of the living, breathing organisms that end up everywhere, in everything, on the end of my fork. This close-up is intriguing. I want to push my way closer, to squeeze in for a better view.
After Peter is home I take long close looks at this little baby, my specimen of study. I examine his eyes, their slight slant, the small folds of skin in the inner corners called epicanthal folds. His nose and its flat bridge are textbook. I read up on Peter’s hand. I see for myself what the nurses were looking at. In my cupped hand, two creases. One begins above my thumb and curves down, the other just under my pinky curves up across my palm to my middle anger. They slightly arch and miss each other. Peter’s creases collide.
There are the Brushfield spots in his eyes, tiny light dots surrounding the pupil in the blue and brown of his iris. It is as if a paintbrush has dabbed his eye and lifted out the color in tiny little bristle fine spots. I take note of his small ears which sit lower than normal. The spaces between his big toe and the four smaller a bit wider than usual. I especially notice the muscle tone that Down mistook for skin which did not retain its elastic quality. He is wobbly and weak. He does not hold up his own head until he is almost 10 months old. He does not walk until he is two.
In 1959,Jerome Lejune, a French cytogeneticist, discovered the presence of an extra chromosome in individuals with the physical characteristics observed by Down. Though it wasn’t until later years that scientists knew where the extra chromosome belonged, on the 21st pair. Our genes—the blueprints of life. From our rods of chromosomes we can trace our sex, eye color, skin, hair texture, voice. Our genes determine the way we begin and sometimes the way we die. The sperm offers a chromosome and the egg offers one as well. It is the moment of meiosis that the chromosomes split exactly in half, offer themselves, conceive something new, duplicate. The new cell is divided into two, those divide into four, then eight, then sixteen over a period of nine months and throughout our lives. We are millions of cells, made from the original, regenerating and duplicating over and over. What we see around us are the end results of 23 pairs of chromosomes, big and small, stripped x’s and y’s which contain the whole plan of the world.
It is the moment of meiosis that the individual with Down Syndrome inherits the extra chromosome through a faulty chromosome distribution. The chromosomes don’t split exactly in half, they fail to separate or disjoin and the pair becomes lopsided and heavy with extra. The pair on the 21st chromosome sticks together and an extra chromosome becomes part of the new living embryo. And as it grows, the extra chromosome is replicated and transferred to each new cell. Three chromosomes on the 21st pair give the name Trisomy-21 to 95 percent of babies born with Down Syndrome. The two other types are Translocation, when a part of the 21 chromosome breaks off during cell division and attaches to another chromosome, and Mosaicism, when the faulty cell division occurs after fertilization resulting in only a portion of cells containing the extra chromosome.
Peter is a ghost every year for Halloween. We throw out all sorts of ideas every year: a pirate, a cowboy, a scarecrow. He has nothing to do with our suggestions. He chooses the garb of a ghost this year again and becomes a different kid, with a not so Casper-like quality. Once the homemade sheet costume is slipped over his head he becomes hunched, his hands are raised. His vocabulary is reduced to “boo, with varying inflections and accents. He considers his frightening new abilities, begins sneaking up on people, slowly from ten to fifteen yards away. His approach takes a quarter of an hour. We have ample time to plan a surprised response.
I wonder, where is the place for people like Peter in this culture? How will he be preserved and presented to those after us? I wonder if a child with Down syndrome could ever more even be speculated in the arms of a Madonna. Public records show that only one in ten couples will choose to have a child with Down Syndrome if the amniocentesis tests positive. I wonder if people will know what a child with Down Syndrome looks like 50 years from now, ten, five. I face my culture and my government and they feel like meeting an armed Diane Arbus in a dark ally. She wields a camera in one hand and a blunt object in the other.
When Peter was about three, and Maggie a newly walking toddler, a woman singled me out at work. She was in her mid-fifties, a different generation, granted. She told me that she had heard I had a child with a disability and another younger. She told me she had a son with a disability too, long ago. She kept him for a while, but when she became pregnant with her second he was just too much. She sent her year-and-a-half-year old child to an institution. It was not the ending I expected, and I wondered why she was telling me this story. I thought about how she still carried him with her, not in the typical way a mother carries her child, but in memory which is often much heavier. In telling her story I thought she revealed, in a generous and selfless way, so much of herself. I knew she was telling me that she was like me. She wanted me to know that she had experienced something of what I had experienced. I knew she was seeking a connection. I found it hard to appreciate.
I nodded and listened and thought, with a nasty bit of self-righteousness and fear, “No, I am not like you.” I thought her so selfish and preoccupied with the newness of another life that she forgot the value in the child who called her Mother first. Never did we consider not taking Peter home. Never did we think that those who came after him would be more valued. Never did we think we had to choose, like a worn out blanket or winter coat, which was worth keeping and which was worth giving away. I wondered if her second child, and her third, and those who followed ever went to sleep wondering if tomorrow would find them replaced by someone or something else?
Perhaps in this way and in others I react too strongly. Still, I wish people sought out the part of themselves that overcomes, that embraces the struggle as the means to learn about life, our responsibility in it, to it. I claim this as my passion. I say it is right and grounded. I say with fervor that one should react strongly to all that grates wrongly against the conscience, and I say this because my stakes seem higher. There are those who will argue that our sense of right and wrong is a given part of us, something we share like arms and legs. I suggest it is a muscle and must be exercised. The voice of conscience unused and unpracticed becomes easily inaudible, like the quiet tinker of little bells strung across a bassinet.
I feel a great deal of gratitude to TARC, which was established in 1954 when parents found themselves and their disabled children shut out of school systems, day care centers, society, and privilege. They began raising money by hosting bake sales, making private donations, selling Stanley Wax, and at the end of their first year they had $800 to serve their children.
Tonight the membership listens as I tell them that inventing a future is a lifetime of work. I look out over the dimly lit room, at the numerous round tables which hold cacti of various sorts meant to add a southwest quality to the western theme of this year’s meeting. Staff bustle about with blue bandannas tied around their necks, pouring tea and delivering the dinner salads. I look into the faces of the membership and see their age. They’ve heard what I have to say one hundred times before, but listen kindly. I find that as I address them I am thinking about how I want to convince them that the young parents today will not drop the ball. But where are the young parents?
I think about how Tim and I fought long and hard to get Peter into our neighborhood school. Those meetings were so brutal, especially for Tim and I who consider ourselves “nice” people, “reasonable” people.
We arrived at the first official meeting to be told that Peter’s teachers were recommending he be placed in a classroom where only children with disabilities would attend. We expressed our strong feeling that Peter should attend the school his sisters would attend. We explained the value of his attending school with “normal” kids, thinking this arrangement would be good for his language, for his social skills, not to mention the academics. We were told that we were “valuable members of the team,” but it was the recommendation of the team that Peter be moved to the secluded classroom. We were told we could appeal the recommendation but administration would not side with us. Tim got up, told them the meeting was over, thanked them for their time.
Immediately Tim and I shifted to business mode, something we have learned we must do to remain effective advocates for our child. In the meetings that followed we brought in copies of the IDEA law, and encouraged the staff and administration to reconsider their recommendation. We pointed to the parts of the law where their actions could be considered illegal. “No hard feelings,” we told them. “This is just business.” But it was actually much more than that and we all knew it. Several parents opted to accept the recommendations presented by staff and administration instead of going through the whole process of appeals. But in not advocating it seems they are laying to waste all the hard work and gains which are laid at their feet. Peter is now allowed in the schools; there was a time when parents couldn’t even expect that. I worry that many young parents have not been educated on the efforts of these people I address, don’t realize they must get involved and advocate, don’t realize they ride the backs of those in this room.
Peter insists on making his own breakfast. When he was six, I thought it would be a good thing for him to learn so I bought some toaster waffles. We learned how to operate the toaster, where to find the butter, syrup, utensils. It has been a thorn in my side ever since. I don’t like toaster waffles, yet he insists on making two every morning, as we did that first time. He hands me mine. Big clumps of butter, way too much syrup. Even if we are in a rush, there is no rushing through the morning waffle ritual. I find myself cursing the high fructose corn syrup, the cellulose gum or whatever part of the syrup makes it so slow. The previous year breakfasts weren’t much better. I was always in a rush. Peter always made an effort to enjoy each bite, savor each mouthful and reply with an “umm” or a “dats good” or an “ahhh.” I set the clock on the stove to beep every 30 seconds to remind Peter it was time to swallow the delicious bite in his mouth and move on to an equally satisfying morsel on his plate.
I clumsily orchestrate my four children out the door, maneuver keys, balance a child on my hip. I am on a schedule. It is 8:05 am, and I have just 3-4 minutes to get the kids out of the house and on their way. I make sure little fingers are clear of the hinges, am momentarily preoccupied as the last child out lets go of the storm door, which attempts every morning to pin me against the front door. Peter, Maggie, Bernadette, and the baby, Bridget, and I traverse the steps of our porch together, and then they are gone. I move the baby off my hip and down to the sidewalk, hold her hand as I walk and watch as my kids stretch out before me, along the sidewalk to the corner where the oldest two will be picked up for school. I watch Maggie’s long limbs and graceful strides as she bounds ahead of her brother, Peter, running to catch up, hands straight down to his sides. The flats of his feet hit the sidewalk, making a thump, thump, thump to contrast to Maggie’s light tap, tap, tap, barely audible. The kids consider the trip to the corner bus stop the day’s first treat. I am thinking about the cold, my hands, how I thought I’d served my miserable time waiting for a bus. I am not smiling. The baby and I are far behind them, two houses. I cannot see Peter’s face, but I know he is smiling and excited. Maggie arrives first at the corner, then Bernadette, finally Peter. I cannot hear what they say, but I see how they chatter, gather closely, laugh.
I arrive and wait with the other neighborhood kids, try to make “small” talk. I ask a neighborhood girl, Dallas, how her cello lessons are going as I stamp my feet to keep them warm. The bus rounds the corner and here we say our goodbyes for the day. The neighborhood’s five riders enter. I watch Maggie make her way back, find a seat, wave. The doors close, I see my reflection in the door windows. I look cold, so does the baby on my hip. Bernadette, only three, stands by my side. She is too young yet for the bus. Peter, my seven-year-old kindergartener/first grader (he spends half the day in each), stands next to me. I remember the Pied Piper and the boy with the crutch and the memory stings. There is a rawness in this moment as we all look at ourselves reflected in the glass of a bus door. I remind myself that I am too sensitive.
The bus pulls away and immediately behind it is Peter’s bus, a mini, the special-ed bus. Up he goes, a kiss, a hug and he is gone, waving enthusiastically. I turn and walk back home with the girls, and I think about how, when Peter’s bus occasionally arrives first, the kids yell, “The baby Bus! The baby Bus!” I wonder if they mean the bus is small or it is for babies.
It is chaos in our house. We don’t always realize, but the bewildered look on the faces of those who leave, say after spending an evening, gives it away. It is our family’s utterly uncultured and unmannered easiness that is the difficulty. Philip J. Bailey once said, “Lowliness is the base of every virtue, and he who goes the lowest builds the safest.” We go for lowliness and have a great time doing it. The kids perform for us. They all have picked stage names: Christina Arena, Christina Sparkles and Peter Music. We listen as they improvise songs, try out their muses in hilarious ways. The Christmas generally sing of love and shoes and the alphabet with lots of “oh yeahs” and “uh huhs” throughout. Peter’s repertoire is nothing but food. He sings of hotdogs, pizza, McDonalds, ham sandwiches, Sonic, various meats, oatmeal, Burger King, toaster waffles. We’re terribly tacky and find these renditions extremely humorous. In addition to being a great lover of food, he is an early riser. More than once I have stumbled out of bed and down the steps to find the entire contents of the refrigerator on the kitchen counter. It is not always peaceful, but it is often a joy.
Maggie recently told me that she couldn’t wait to have another year of Kindergarten. I told her next year she will go to the first grade. She asked me why “Peter got two Kindergartens.” She is right, Peter attended Kindergarten last year as well. I sat down with her as a means to find out just what she understands. We have explained to her about Down Syndrome, and in her understanding it has a large part to do with Peter’s glasses, why he wears them and why she doesn’t. I asked her what Down Syndrome means and she tells me, ‘Peter can’t do some things so good. He can’t see so good so he wears glasses, but he is the same inside, he has a heart and all that other stuff.” I asked her what she thinks about Down Syndrome and she responded, “I think it’s great. Next question, please.”
My favorite part of the annual meeting is the awards banquet where consumers (the word we now use for people with developmental disabilities served by TARC) receive awards for their hard work over the past year. It begins with a group who has agreed to entertain us with their music. They mount the stage, via the handicap ramp, and proceed to simulate a rainstorm on huge flat pie-looking percussion instruments. They begin by running their hands around and around the circumference of the instrument, it sounds like wind. Next they tap the instruments with their fingers, lightly, lightly, then harder until it really does sound like dozens of raindrops, hitting a window or sidewalk. They are then given their drumsticks, foot-long pieces of wood with padded ends. It is now clear why the drumsticks were kept out of their reach. They laugh, shriek with delight and bang on the drums, bang and bang to simulate thunder.
After the performance, I watch as an award is given for perseverance to a man who has worked in the governor’s office for over eight years. He wears a suit jacket, tie, sneakers. He receives his award, searches numerous pockets and finally pulls out a piece of paper, folded exactly twice, and reads his acceptance speech: “If you work hard, your life will be a success.” The paper is refolded and restored to its pocket. He returns to his seat.
The award for enthusiasm is next. The presenter doesn’t make it through the introduction before the recipient, a male in his 40s, bounds his way to the stage and puts an arm around her. She tries to continue but is repeatedly interrupted by his pleased acclamations of “Whew!” or “This is big!” or “This is real big!” She tries once more to continue and is again interrupted. He yells and points, “There’s my mom and dad! Hello Mom and Dad!” Two tiny, old people sitting at a back table smile and wave towards the stage. He shakes his head, is so genuinely pleased. I applaud until my hands itch.
I think about all that we lost that day, and of all that we gained, almost eight years ago when Peter was born. I think about the human spirit which rallies, which revels in the ability to get past, to get through. I wonder if it was our bravery or our naivety that sought brothers or sisters for this child. We considered what it would be like to explain to a child why we, who love children and wanted children, chose to have only one. I never wanted to face my child and say, explicitly or not, “We wanted more, but none like you.”
Peter is our oldest but will remain the youngest. Each of his sisters will pass him in height, in knowledge, in vocabulary. I cheer for his small victories. He will always be the first who learned to read. Tim and I take great pride in hearing him read complete sentences, he still doesn’t speak in them. At bedtime Peter reads to us all, slowly and deliberately as he points to each word. We sit on the bed, surround Peter with our bodies and listen as he reads to us.
Once when visiting the school, Tim and I ran into the principal who began telling us a story about how one day she heard a ruckus in the hallway and found Mrs. Levins, Peter’s paraprofessional, and Peter in an argument in the hall. Peter was irately yelling, “Homework! Want homework!” Mrs. Levins had no book to send home with him that day and was trying to explain, “No, Peter. No homework today.” The principal laughed, and told us she had never heard the contention put quite that way before. Mrs. Levins tells us that she thinks we have a recreational reader on our hands. The thought thrills me, and I hope one day he will read books I loved as a kid, Horton Hears a Who? Perhaps one day the Pied Piper?
Charles Buxton, an English physician, visited Down and recorded his impression of the visit in the Surrey Office Records. Buxton called Down the “right man in the right place,” and described how children followed him like the Pied Piper, “Taking his hand and evincing their unfeigned delight in his presence.” I read this and make a mental note to rethink my opinion of the children’s tale.
In 1868, Down purchased Normans field, a “gentleman’s residence” with five acres. In time he acquired the other two houses in the development, more land, and opened it all to residents with mental and physical disabilities. On this property, he and his wife Mary created an environment of learning, providing opportunities for education and craftsmanship, worship and entertainment to as many as 156 residents. Each staff member was required to have “musical or entertaining skills,” which were often showcased in Normansfield’s elaborate theatre. J. Langdon Down continued work with the “feeble-minded” until his death in 1896.
I have seen several of Down’s clinical photographs, which have survived and remain the largest collection of clinical photographs in either the United States or Britain. No women in nightdresses, no painted handlebar moustaches or rolled up stockings to the knees. They are pictures of children in beautiful clothes, collars of lace and embroidered hems. They are pictures of men, like my son Peter will one day be, with button-down waist coats and ties, cleanly shaven, hair combed, legs crossed in dark crisp trousers with hands folded in laps. Like Velazquez’s portraits, they are full of dignity.
The final award given at the banquet is for the consumer who has held a job for the longest time. She is a dishwasher at a local restaurant, employed there for 10 years. She walks to the podium, head down, hands raised over her head in a thumbs up gesture, shaking them as marathoners do after crossing the finish line. She proceeds to accept her award, “I just wanna thank the Vintage. I love them at the Vintage and they’s always says that when I finish with the pots and pans, they’s look just like they’s new. And I love them all at the Vintage and I turned 51 in October and I gonna work for the Vintage until 1100 years old. And I pray for the Vintage, but what I really wanna do is sing my music all over the world. I really wanna to be a country singer. But I thank you to the Vintage and I pray for the Vintage every night. Thank you.” She walks down the ramp just the way she walked up, head down, hands above her head, shaking her proud fists with victory.
At last year’s banquet a young man fell on his way to the stage. The room gasped. Members of the crowd got out of their seats to help him up. As he was pulled to his feet I noticed he was still smiling. He brushed off his jacket and trousers and similarly brushed away those who asked if he was alright. He was on his way to the stage and no fall, no humiliation, no embarrassment, no well-doers would slow him down. To those of us who sit and observe, these experiences are invaluable. I slow myself down, retardatio, and observe. Learn.
I find that people with little notion about Down Syndrome say things like, “They are all so loving.” Generalizations like this are hard for me to take. I don’t lump my girls’ personalities because they are girls, because they were born without complication. But the thing that irritates me even more is the realization that sometimes generalizations work. He is loving, extremely so. I can discipline him and he holds no grudge. Of all my children, it is the hardest for me to see him cry. I can’t wrench a “sorry” out of our daughter Bernadette, but his are given immediately and sincerely. He is there, present in emotion at every second. He hides nothing, except a package of hotdogs now and then under his shirt. He doesn’t laugh out of courtesy; he doesn’t know when he is snubbed. He embraces children who remain stiff, roll their eyes, turn their heads, and he loves it. He is raw and we relish this about him. I try to seek humility as he shows it to me daily. I wish I could take some of what people throw his way and send it back to them. I wish I didn’t have those desires to throw back at all. I wish I made better use of opportunities to teach others.
I think back to when Peter began Kindergarten. All the parents and their students were invited to come in the night before, to put away supplies and find a spot at a table. Tim and I arrived with Peter. He picked a table and sat. We watched, awkwardly, as tables began to fill while Peter sat alone. He got up to explore, and while he was gone a little girl and her father picked a spot at Peter’s table. When he returned, the father apologetically picked up his daughter’s supplies and moved elsewhere. It is in these times I hurt, but only for myself. Peter doesn’t notice.
Yet, I know he will one day. Until then my heart breaks only for me. I wish I had done Peter justice, perhaps explained him in a kind and objective manner to this father. I wish I could have pulled out a painting by Mantegna and a picture of Peter in his ghost costume. I would note the similarities of the two little boys with almond eyes, wrapped in sheets. I could tell the story of the Pied Piper. I could use the chalkboard to diagram chromosomes while providing an introductory to genetics; I could illustrate all my thoughts with an elaborate formula which equals Peter, all that he is and all that he is not.
Erin Newport is a graduate student in English at Kansas State University. She completed her undergraduate degree at Saint Mary College in Leavenworth. She and her husband, Tim, live in Topeka with their four children. Her essay, “Lessons from the Unlikely,” was selected as the winner of this year’s Touchstone graduate nonfiction contest.
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