March 7, 2013 by Kessia Robinson
“Oomby-goomby-a-la-maaaaa!” Darren said, reaching out with a claw-like hand.
We didn’t know the exact words the shaman used to rip victims’ hearts out in Indiana Jones and the Temple of Doom, but “oomby-goomby” was close enough. For weeks after watching the film, Darren, the prankster among us six kids, would chase each one of us around the house with an outstretched hand and a creepy litany. We all screamed, but Zachary—two years older than me and two younger than Darren—reacted the best.
When it was eleven-year-old Zachary’s turn, Darren wadded up a piece of red construction paper and, after the oomby-goombys, seemingly ripped this crimson “heart” right out of Zachary’s chest. Then he ran off, yelling, “I’ve got your heart, I’ve got your heart!” like an overenthusiastic uncle who’s taken the “I’ve-got-your-nose” game too far.
Zachary roared after him, and they sprinted all around the house and up and down the stairs until finally Darren darted into the bathroom and flushed the makeshift heart down the toilet. Collapsing to his knees, Zach gaped down into the porcelain bowl, screaming and sobbing.
We laughed. Each of us had a turn being tormented by Darren, and that on a regular basis. Zachary was no different. He was one of us. He was one of my three older brothers. Period. My two younger sisters and I used to play with his action figures in his room. We used to annoy him until he’d chase us around the house. He used to lay out his blankets in the hallways so that when one of his little sisters walked on it, he could jump out and wrap us up in it, crying, “You’re trapped!”
In case anyone asked about Zach, our parents had given us the answer-all title to use with peers at our elementary school (“What’s wrong with your brother?” “Zach? He’s autistic.” “Oh. That’s okay. My mom says I’m artistic too.”), but to us, Zachary was as normal as oatmeal.
Gradually, however, I learned the fateful meaning of “autism”—as well as the meaning of that ugly word “disability.” On one of these learning days, my mother went with Zachary to his art class to speak with his art teacher. At that time, I was a senior in high school and Zachary was taking a few classes at Antelope Valley Community College, including Introduction to Drawing. He had to purchase an enormous sketchpad, upon which he set about drawing gigantic boxes and buildings and spheres in a whirl of graphite and black paint.
Our family, of course, couldn’t have been prouder of Zach. It had been a long process to get him to AVC and, on many levels, it was a team effort. The struggle started when Zach entered kindergarten and public school administrators insisted that he attend Special Education classes. On some levels, this made sense, especially since Zachary didn’t consistently start to talk until middle school. But after a fruitless year in Special Ed Kindergarten, my mother barged into the front office equipped with classic parental stubbornness and argued until the administrators caved.
The day before Zach would repeat kindergarten, this time in General Ed, my mother took Zach to the empty classroom and showed him around. Nervous, hoping she was doing the right thing, my mother knelt in front of Zachary and put her hands on his shoulders. “You’re a regular kid, aren’t you?” she asked.
Zach, the silent child with the ever-staring brown eyes, looked at her and said, “Yes.”
He’d never said that before.
Swallowing, Mom said, “You’re a regular kid just like Kaleb and Darren and you are going to a regular school.”
At AVC, however, Zachary’s art teacher explained to my mother that Zachary would not be permitted to continue the class. He distracted the other students. He didn’t follow instructions. He rocked in his chair. “I just can’t teach him,” the art teacher said. “He’ll have to withdraw.”
Later that same day, after hearing my mother rage about it as she drove me home from school, I slipped into the laundry room and squeaked open the door to our three-car-but-carless garage. And there, amidst the junkyard of broken bicycle helmets, half-painted two-by-fours, and bins of mismatched shoes, I saw Zachary’s sketchbook. Swallowing, I stalked forward and reached out, touching the corner of the sketchpad. My breath came heavier than usual as I crouched down and flipped it open.
There, I saw brimming treasure chests, chessboards, spheres, sky scrapers all etched out in graphite. To my untrained eye, the drawings looked perfect—shaded correctly and measured accurately to create realistic angles and dimensions.
So I looked for a long time, wondering what flaws the art teacher saw.
That day, and many other days just like it, I began to realize just what “disability” means: that no matter how hard my parents fight to get Zach an education, no matter how many times my siblings or I defend him on the playground, no matter what type of anti-discriminatory disability laws are set up by the government, Zachary won’t be granted the same opportunities as the rest of us. “Disability” means closed doors. But more than that, “disability” means the people behind those doors, bolting them shut against something they see as alien, against something they want me to see as alien too.
But then, this is part of the problem. My definition of “disability” isn’t shared by everyone, and this lack of consensus is largely what causes so much conflict. According to James Graham, there are two main and opposing definitions of this unfortunate word and the battle for fairness and equality rages on the border between them. The first camp is called the medical model and “locates the ‘problem’ of disability, within the individual.”1 In other words, if Zachary fails to conform to normal social behaviors or in the education system, this failure is strictly the fault of his autism, of the impairment he intrinsically holds within himself.
An example of someone who espouses this model would be the psychologist who diagnosed Zachary in the first place. My parents noticed something different about Zach once he hit eighteen months. Before that, he was an advanced toddler, as remarked upon by his doctors. My mother had a list of ten words he could say. But after that first year and a half, he stopped talking altogether. My parents attempted to get an explanation for this withdrawal for another whole year and half. Finally, when Zach was three, they got the psychologist to give his diagnosis: Zachary had autism and therefore no future. He’d never do anything the rest of his siblings would do. He’d never write, never talk, never graduate high school, never go to college. Even his drawings, which my mother talked of to prove his intelligence, were merely for his own stimulus and would never make sense to anyone else or ever have any actual meaning. The psychologist told my parents to bury in their minds the brilliant child they’d thought they had and accept in his place this challenged changeling. For this psychologist who believes in the medical model, Zach could never function like everyone else in society. His impairment, his autism, would forever limit him and hold him apart.
In one sense, this medical model holds some truth. Zachary does have autism, and there are severe challenges that come with that. However, the medical model allows Zach’s autism to become the scapegoat for any mistreatment or discrimination Zach receives. If Zach is dismissed from his art class, it isn’t the fault of the teacher or the students or the institution, but the fault of Zach’s autism. If peers make fun of him, if sisters in the ward refuses to allow him into the Joy School program, refuses to allow him to play with their children, it’s not their intolerance that is to blame, but Zach’s autism. Any disappointment Zach faces is forever his own fault or, at best, the fault of his unfortunate genes. For Zach to have the hope to function as one of us, to interact with the “rest of us” according to this model, he must be cured. Otherwise, he’ll forever be segregated.
The opposing standpoint to this is known as the social model. This model comes closer to the definition of disability that I discovered through experience. Instead of locating the problem within the individual, this model finds the problem of disability within society. As Graham says, “People with accredited or perceived impairments, regardless of cause, are disabled by society’s failure to accommodate their needs . . . ‘disability’ is not a product of individual failings, but is socially created.”2 In other words, if Zachary fails in the school system or in the work place, we all fail. We as a society are to be accountable for the opportunities granted or denied those like my brother. Impairment is inherent; disability—the lack of the ability to function in society—is created.
Though I celebrate this definition, I also recognize its main problem: acting in accordance to this model requires great sacrifice—sacrifice not everyone is willing to offer. To allow Zachary to have equal opportunities, to meet his needs, the rest of my family and I had to shoulder his burden. We had to take upon ourselves some of the consequences of autism in order to help push him forward. In a way, it’s like being on a hike with a friend who sprains her ankle. Your own ankles are whole, but, in order to help her, you drape her arm over your shoulder and you both hobble so that she can hobble a little faster. Similarly, Zach has an impairment, so we as a family all hobble with some social norms and communication issues so that Zach can hobble a little faster. We all become a little autistic ourselves.
Zach finds it difficult to interact with other people. Young Men’s and Young Women’s activities always proved interesting. “Zach!” I remember saying often. “You can’t tackle girls from behind and wrestle them.”
“Because why?” he’d ask.
He wrestled boys all the time, after all, and everyone had a good laugh.
“It’s just . . . it’s different with girls,” I’d say.
And my entire family stifles laughter whenever Zach gives an exaggerated bear yawn and stretches dramatically during high councilor talks in church.
Zach simply has a hard time knowing when it’s appropriate to express what he feels, what is appropriate to express publicly, and even how to express it. Because of this, many of my memories of Zach feature him sitting alone in his room, cross-legged on the floor, rocking as he punches buttons on a videogame controller, or rolling dice and writing down endless numbers, or drawing comics. This isolation, this “autistic aloneness,”3 partially occurs because social norms are so difficult for him.
In supporting Zach, social norms became almost as difficult for my family and me. When Zach was young, around seven or eight, the sound of hand dryers in public restrooms drove him to hysterics. Something about the strong motor noise terrified or even hurt him. Whenever anyone used these devices, he’d scream and sob, running out of the bathroom, trembling. It came to the point that he was afraid to use public bathrooms. In order to help him, my parents had to stand outside the men’s room door and beg every person entering, “Please, don’t use the hand dryers, sir. Whatever you do, don’t push that button.” In order to help him, my parents were the ones who ended up looking odd.
This is one reason why siblings of children with ASDs (Autism Spectrum Disorders) demonstrate “lower levels of social communication and social-emotional functioning.”4 Like Zachary, I spent a lot of my childhood alone, reading books, writing stories, and painting. I was shy around other people. In fact, I trembled at the mere thought of even going to the store because if I purchased anything, I’d have to talk to the cashier. Because of the inability to communicate openly, I too felt cut off from my peers and locked inside of my own internal world. Many of my siblings felt similarly. As we assisted Zachary, every one of us experienced “autistic aloneness.”
Naturally, a lack of social and communication abilities makes relationships difficult. Zach’s behavioral problems—especially rocking and tantrums—prompted many people to keep their distance. At a church activity when Zach was about seven, he lost his first baby tooth. Usually, Zach kept to himself. But now, he started wailing. “My tooth! My tooth!” he sobbed, racing back and forth, holding it up in anguish amidst a sea of startled primary children and confused teachers. He refused to be comforted, feeling hopelessly disfigured. And in the end, the only thing that helped was for him to put the tooth back in its rightful place and pretend it had never happened.
These types of behaviors even made closeness difficult between us as siblings. After all, in any competition, if Zach lost, he would scream and roar and insist, “I DID NOT LOSE!” And if we provoked him enough, he’d curl his tongue between his teeth and chase us around with a fork or a butter knife. Our communication was often harsh and extreme.
It’s no wonder to me that parents with a child with ASD are twice as likely to get divorced.5 In our family, the relationship between our parents lasted, but was filled with friction. Not only that, but parent-child relationships suffer as well. Studies show that there is increased differential parenting in families with a child with ASD, usually favoring the child with the disability.6 I recently asked my mother how she managed to balance caring for Zach and five other children. Her answer: “I didn’t. I just focused on Zachary.”
Our family relationships suffered.
Most of the siblings in my family still feel quite distant from our parents. Growing up, we relied more on each other. Even then, our sibling relationships were often strained. As also shown through various studies, siblings of a child with ASD often have less intimacy and nurturing among themselves.7 We communicated both love and anger through pushing each other off the trampoline, mocking each other, scratching, punching, throwing chairs, or even threatening to jump off of two-story banisters if the others didn’t listen. There were tender moments, too, of hugs, cuddling, and compliments—but there were plenty of times in which trying to rip someone’s heart out was more truth than fiction.
In these ways, everyone in our family suffered the consequences of autism. But on the other hand, our interaction with Zach helped him learn to function in society, providing him with adequate communication skills. Our sacrifice allowed him to succeed. This is consistent with the studies that show that typically developing children positively influence the development of social skills in their sibling with ASD.8 Zach did develop social skills and communication skills that allowed him to succeed. In fact, in Zach’s case, after the AVC debacle, he attended some classes at BYU and eventually went back to successfully attend AVC. The sacrifice of our own social skills and relationships are part of what allowed Zachary this chance.
The social model calls for an extreme and Christ-like sacrifice. Jesus Christ suffered the consequences of the sins and hardships that were not His so that our burden could be less—so that we might one day function in the society of the Celestial Kingdom. Caring for someone with autism calls for us to follow Him in that we reach out to bear another’s burdenso that they can function in our society today. To do this, we embrace their weakness and take it upon ourselves. Hence, we have to give up our need to be the best, to be the most socially adept, the most intelligent, the most skilled. We have to give up our hopes to look like the best parent, the best spouse, the best sister. For the welfare of another, we surrender our most cherished pride: our pride in our greatest strengths.
This is why people struggle to accept the social model. What teacher wants to slow down their classroom so that their one impaired student can succeed? What company wants to limit productivity so that one worker with a disability can excel? What nation wants a population of 100% slightly-autistic people when it can have a population where 95% of its individuals are typically-functioning? Why should we make so great a sacrifice for the one in one-hundred-and-ten?9
In my family’s experience, I’ve discovered a few answers. The first reason lies in Zachary’s internal world. In some ways, due to Zach’s lack of communication, that world was his prison. In other ways, however, that world—that region he developed in his autistic aloneness—is his masterpiece. We don’t always get the chance to peek into this world, but every now and again, we glimpse Zachary—the real, hidden Zachary he can never fully express. In these moments, it never crosses my mind to ask why we make sacrifices to foster such a rich perspective.
One such moment occurred when Zach was in second grade. Again, through elementary school, Zachary rarely spoke. In fact, he rarely did anything other than sit in his chair, rock, and stare with huge brown eyes at all the world. But one day, a boy, a classmate of Zach’s, had been tormenting a little girl at recess, teasing her until she cried. Zach, without saying a word, walked up to this boy and kicked him—right in the groin. When the principal came for Zach, my silent brother pointed a finger at the injured torturer and said, “I’m not the bad guy—he is!”
Another time, at a merit badge award ceremony, he saw a bunch of older scouts pummeling a younger kid in the parking lot. Without a thought, Zach ran right at the group, scaring the bullies into scattering. He was a cub scout at the time.
This is the Zachary that few people get to see, the one with a strict sense of justice and compassion for the weak. People don’t see the Zachary who comes between two of his siblings when they fight. They don’t see the Zachary who literally leaps between two fighting dogs to get them to separate. They don’t see the hero who’s never too intimidated, too timid, or too terrified to help someone in need.
We’ve also seen this core part of Zachary in his artwork. The psychologist who diagnosed Zach may think he only draws for his own stimulus. His art teacher may assert all he wants that Zach doesn’t follow directions. But Zach’s drawings demonstrate that he sees things that we don’t see. I discovered this in a drawing in which Zach was supposed to imitate a grayscale version of Van Gogh’s Still Life—Vase with Irises Against a Yellow Background. The art teacher, as usual, was frustrated that Zachary didn’t follow exact instructions. In being so focused on those instructions, however, the art teacher failed to see what Zachary was actually doing.
Take a look at the pictures below. The one to the left is the Van Gogh original. The one to the right is Zachary’s version, which is anything but identical. To demonstrate some of the biggest differences, I’ve circled two areas. By filling in what Van Gogh left blank, Zach draws the focus to the negative space within the circles. Most people, when they see an image like this, see the flowers and the vase. Zachary, however, has illuminated the shapes the flowers create in the background—the negative space that most people don’t even see. Not only has Zachary done this, but he’s organized it in a beautiful way. In Zachary’s drawing, you’ll notice I have two lines enclosing the circles. Looking at the drawing, you can see that he has made his van Gogh imitation into a giant X. On one half of the X, the one I’ve outlined, he portrays some of the negative space. Crossing the other way in this X, the drawing is more of a copy, focused back on foreground. Zach has made the perspective that we most often see collide with the viewpoint we don’t normally notice. He has intersected two ways of looking at the world—shown them as opposing yet connected at core.
That is the Zachary I’ve had the chance to know—the one who sees the negative space, the perspectives and people that aren’t otherwise noticed. By seeing things we don’t, Zach brings to our attention things we might never have thought of before. It may be difficult to tell from the outside, but, at heart, Zach is one of the most compassionate, beautiful people I’ve ever met. And if we don’t embrace the social model, if we don’t make sacrifices that allow him to develop his gifts, then we flush that heart—that heart made out of red construction paper, sketchpads, and negative space—down the toilet.
In supporting Zachary, it’s true that I became more like him in adverse ways, in the more unfortunate consequences of autism. But I also became more like him in the positive ways. Through working with him, I learned to see the unnoticed perspective. I learned to observe the negative space. I learned to live in the intersection where opposing viewpoints connect.
1 Graham, James. Autism, Discrimination, and the Law: A Quick Guide for Parents, Educators, and Employers. London: Jessica Kingsley, 2008. Pring. Quote, p. 20.
2 See Graham. p. 21.
3 See Graham p. 21.
4 Brewton, Christie M., Kerri P. Nowell, Morgan W. Lasala, and Robin P. Goin-Kochel. “Relationship of the Social Functioning of Children with Autism Spectrum Disorder and Their Siblings’ Competencies/Problem Behaviors.” Research in Autism Spectrum Disorders 6 (2012): 646–53. Print. Quote, p. 647.
5 Hartley, Sigan L., Erin T. Barker, Marsha Mailick Seltzer, Frank Floyd, Jan Greenberg, Gael Orsmond, and Daniel Bolt. “The Relative Risk and Timing of Divorce in Families of Children with an Autism Spectrum Disorder.” Journal of Family Psychology 24.4 (2010): 449–57. Print. Quote, p. 454.
6 Tsao, Ling-Ling, Randy Davenport, and Cynthia Schmiege. “Supporting Siblings of Children with Autism Spectrum Disorders.” Early Childhood Education Journal 40 (2012): 47–54. Print. Quote, p. 49.
7 See Tsao et al. p. 48.
8 See Brewton et al. p. 651.
9 See Tsao et al. p. 47.
Robinson, Mirka. Personal Interview. 21 August 2012.