In March 2012, Avenue published “Precious Cargo,” a long feature (the longest we’d ever published by a long shot) by Craig Davidson about his year driving a school bus for kids with special needs. The article was awarded a National Magazine Award Gold award for Best Essay.
The article also became the basis for Davidson’s book of the same title, published by Knopf Canada in 2016. The Globe & Mail review called the book “an almost singular accomplishment” for its ability to handle the issues of ability and disability and the both tiny and enormous differences between them.
Now, Precious Cargo is a contender for the 2018 Canada Reads program. The Canada Reads debates take place March 26 to 29. You can hear Greg Johnson defend Precious Cargo as the book every Canadian should read this year here.
Below is the original article published in Avenue in March 2012.
Joan Didion once wrote, “We tell ourselves stories in order to live.” The students on Bus 3077 told stories in order to live beyond their bounds, and their stories followed a pattern specific to each teller. They were like fingerprints that way.
The student who told the most ambitious stories was Josh. Sixteen and slender – he will likely be slender his whole life: not because he watches his weight but because, for him, eating can be a chore – Josh had a lilting British accent acquired when his family lived overseas.
His face hinted at a possible future handsomeness: it was there in the prominent cheekbones and aquiline nose. But his eyebrows were too wild and his hair still possessed that baffling teenage tendency to stick up in unruly cowlicks; no matter how many times Josh’s father or caregiver ran a comb through it, Josh usually rolled out of his house with at least one sprig jutting at a quizzical angle, like the mast of a sunken ship slanting above the waterline.
Josh’s electric wheelchair was dinged and scuffed, weighed down with a rechargeable battery the size of a cinderblock. He was forever bumping his wheelchair into walls and miring its tires in snow. It wasn’t that he had an appetite for destruction: Josh had a classification of cerebral palsy called spastic quadriplegia, the result of a lack of oxygen at birth. Symptoms include hypertonia (involuntary spasms), muscular rigidity and abnormal muscle tone.
This meant Josh had a hard time controlling the wheelchair because, as he put it: “A million trains hurtle out of my brain with messages for my body, but they keep crashing into each other, so the messages never get there.”
As we drove the sleepy thoroughfares and cul-de-sacs that made up First Student Canada’s school bus route 345 in south Calgary, Josh regaled his fellow riders with stories. His specialty was space opera: waylaid starship explorers trying to find their way home, or a ragtag crew of humans, aliens and cybernetic helpmates staring down a dire intergalactic threat.
Josh’s stories were similar in two ways. One, they always ended with the explorers safely home or the threat vanquished. Two, they featured a young male character with telekinesis – the ability to move objects with his mind, without any reliance on his body. This character wasn’t the dashing commander or the surly starship mechanic who, as Josh might have said, “keeps this clanking bucket of bolts afloat!” – but he was always involved in the mission’s success in some minor, yet essential way.
Josh and the other kids conjured new lives into existence every day -any life they wished. They had already discovered something it takes some storytellers a lifetime to figure out: tell the stories that lie nearest to your heart. That way, they’re not really fabrications at all. They’re truths as they know it: truths shaped by their own outlook and reflected through the prism of their own experiences.
And they were, in every instance, hopeful truths.
My own story started with a flyer stuffed in my mailbox:
SCHOOL BUS DRIVERS WANTED! NO EXPERIENCE NECESSARY!
There was a number to call, so I called it. This says no more about me than facts should indicate: namely, here was a man who had reached a point where he made life-altering decisions based on random papers shoved into his mailbox.
Within minutes of showing up at the bus company’s human resources office, I was in the bathroom urinating into a plastic cup. My interviewer exhibited profound satisfaction with my drug test sample.
“It’s super-clean,” she said, jocularly. “Are you a saint or something? Some of our applicants find clean stuff on the Internet.”
The prospect of selling my exceptional urine to upwardly aspirant drug abusers was dashed when she clarified: “They buy detox pills to clean out their urinary tract.”
During the interview, my every answer elicited an emphatic nod. I began to wonder just how deeply I could manifest signs of runaway psychosis and still pass muster.
Interviewer: Consider this hypothetical: while you’re driving, the students begin to cause a disturbance. How would you respond?
Me: I guess I’d fire a few of them out the windows like paper airplanes.
Interviewer: You’re a doer, Mr. Davidson, not necessarily a thinker. I, for one, admire that.
Training consisted of 20 hours in class and another 20 in a bus. Our in-class trainer was a retiree with a whitewall haircut cropped so close to his skull that you could see blue, wormlike veins braiding up behind his ears.
“We’re not transporting potatoes, people,” he’d say. “The technical term for what we carry is precious cargo.”
My training vessel was a 72-seat hognose pusher – “hognose” because the hood fell away directly in front of the windshield; “pusher” because the engine was in the rear. It rode on massive leaf springs that threatened to turn every training run into a white-knuckled amusement park experience.
My trainer, Don, was a preternaturally upbeat fellow who wore smoked clip-on lenses that flipped down over his prescription glasses.
Don offered effusive praise whenever I accomplished the most rudimentary driving maneouvre.
“That’s it, Craig, keep the nose angled toward the yellow line … Good, good, now mind your backswing – these big boys swing a good four feet, so watch out you don’t slam into that Nissan parked at the curb … Right, right, get the wheel centred … bango! Now that’s a textbook left-hand turn.”
Don was a lovely person, and the very best kind of teacher – knowledgeable, supportive and genuinely kind. Most everyone I met during training, both instructors and driver-trainees, were similarly kind … which was a bit of a shock.
I’d come into training with a jaundiced view of my new fraternity – that school bus drivers were battleaxes named Myrtle or Fran who chain-smoked, wore clearance-centre Jordaches and had 40-year-old sons who drove fourth-hand Camaros. Or they were Bennys and Zebs – guys whose bodies appeared to be composed of braided coat-hangers beneath loose-fitted lumberjack shirts, whose teeth looked like freeway pileups of tiny grey sedans, and who spouted obvious sexual double-entendres and who’d spent the past summer picking apples for three bucks a bushel.
It startled me to discover that, while there were a few Myrtles and Zebs, most drivers were single mothers, Ph.D candidates or bored retirees – people who, much like myself, were simply looking to do something vaguely valuable for a few hours a day.
The last week of August, I was assigned my route in a cramped office abutting the dispatcher’s bullpen.
“South end of the city?” the route coordinator asked. “Most of those are spoken for … there is one.”
The coordinator printed it up. “Special-needs route.”
Written on the printout were words I understood in a hypothetical sense, unattached to any personal experience. Cerebral palsy. Autism Spectrum Disorder. Fragile X syndrome. I scanned the students’ programs of study. Some read PLP 4 – I’d discover that this stood for Present Level of Performance, a subsection of each student’s IEP (Individual Education Program). Two students were designated ALP, for Adapted Learning Program. Beside one student’s name was a hastily scrawled note: “No sense of direction; cannot be left alone, will get lost.”
Later that day, I looked up the definition of “disabled”: a physical or mental impairment that substantially limits one or more major life activities. But that offered no real clarity. A cousin of mine had fallen down a flight of stairs, leaving her with serious neurological damage; portions of her face were now paralyzed and she suffered severe memory loss – surely she was disabled, right? But hers was a different kind of disability than cerebral palsy, a condition that can be present at birth.
When I was young, there was a boy down the block with a sunny disposition and a wide-set softness to his features. My mother told me he was “slow.” I figured she meant he couldn’t run fast, but, then, neither could I. At school, a room had been set aside for the “special kids.” Some of the boys wore hockey helmets. One girl wore padded gloves. Another boy, much older than the rest of us, kicked a big red ball down the hallway.
In time, one comes to understand that certain people need wheelchairs or seeing-eye dogs. Others reach adulthood still fascinated by things that only compel our own interest as a child. There are people whose bodies don’t look or operate the way our own do, and whose brains don’t process stimuli the same way.
During driver training, we’d received only an hour of hands-on instruction relating to special needs. We’d clustered round a bussette – a.k.a. Handi-bus, a.k.a. Short Bus (even at the bus company I’d heard them called that) – while our instructor wrangled a wheelchair onto a rusted ramp.
“Everybody is built to different tolerances,” Don told us. “You need to accept these kids’ tolerances, and understand your own.”
Holding the printout of the special-needs route came with the knowledge that each name was attached to a boy or girl with conditions I knew almost nothing about. It unnerved me. In trying to unpack the source of those nerves, all I could settle on was a sense of otherness – brutally ignorant, yes, but I truly felt the lives of these kids followed a trajectory that held little in common with my own. I found myself wondering how I could possibly relate to them.
Plus there was that instinctive fear these kids might behave … oddly. There were those hidebound rules governing social decorum – no invasion of personal space, no overt familiarity – that individuals with special needs often felt no urgency to follow. Within moments of meeting you, they might hug you, pinch you, touch themselves inappropriately, punch themselves, refer to you as “mother,” claim you have a “horsey-face,” moan or mutter or laugh at nothing, flap their arms like a bird, repeat the same question over and over, sing nonsense lyrics at a lung-rupturing pitch, lick their hands compulsively like a cat or offer impromptu karate demonstrations, winging wild kicks inches from your nose – all of which I would experience during the coming year.
“It’s been tough nailing down a driver for that one.” The coordinator reached for the printout. “Let’s see if we can’t find you something else, eh?”
“If it’s all the same, I’ll take it.”
“Done deal,” she said.
I walked out of the office with a printout for Route 345, serving Centennial Senior High and Mountain Park Junior High, in southeast and southwest Calgary, respectively. I headed over to the bus yard to pick up my bussette, No. 3077. It had 57,000 miles on the odometer, and no rips in the seats.
“A sweetheart of a cheese wagon,” said the mechanic, handing over the keys.
Oliver told stories, too, although they were less “stories” as one typically configures them – that is, with plots and consistent characterizations – than they were spur-of-the-moment fabrications.
In fact, “lies” paints a more accurate picture. Oliver’s fibs were M.C. Escher masterpieces in which crazed helixes of untruths spiralled to half-sketched vanishing points; monstrosities of misinformation that beggared all laws of physics, biology or common sense and threatened to topple under the weight of their own audacious creation. One marvelled at the blithe genius it took to conjure such falsehoods, yet Oliver told them with such dick-swinging panache that to deny his right to tell them would have been cruel.
Oliver was 13 the year I drove him; he’s 16 now, but looks much the same. Short for his age, with protuberant ears and vaguely elongated features, up close, the edges of his eyes and corners of his mouth are prematurely seamed. Back then, he wore his hair combed forward in iridescent layers; often it was covered in a hoodie, giving him the look of a determined druid or a Benedictine monk disillusioned with the Orthodoxy.
Oliver often kicked off the day with a white lie, such as, “I drank a mug of java to get my morning started.”
He hadn’t, of course. His parents would never allow it. But, if this fib flew, he’d be off to the races.
“I’m joining a gym. I’ve already got a pretty well-developed upper body.”
Oliver’s upper body, like the rest of him, looked like it ought to be startling crows in a farmer’s field.
“I’m a vampire, man – I sucked a kid bone-dry last night. His blood tasted like cherries.”
“I’m buying a Ferrarri for a hundred bucks. Guess I’ll need a paper route to afford it.”
On those rare occasions anyone questioned Oliver’s assertions, he’d give an elaborate sigh, as if it was a Herculean labour scattering pearls amongst such disbelieving swine.
Oliver was born with Fragile X Syndrome (FXS), an anomaly in the X chromosome – specifically, a failure to express the FMR1 protein. It leads to delayed development, be it physical, intellectual, emotional or a combination of the three, but most notably mental impairment. Oliver’s own experience certainly seemed to draw a little from columns A, B and C. Kids with FXS are anxiety-prone and hypersensitive to tactile stimuli; they’ll often withdraw from even the lightest touch. They find certain sounds or sights or the texture of some clothes irritating; Oliver constantly pulled his shirts away from his chest, tweezing and tenting the fabric ritualistically.
“When I was two years old, my brain weighed 50 pounds,” Oliver once said solemnly, like a doctor delivering a morsel of sage advice.
At the end of each day, the special needs teacher led her students through the chaotic schoolyard to the bus queue. Sometimes Oliver would peel away from his group and drift toward a pocket of students. He’d sidle up next to another kid and either clasp a chummy hand round his shoulder or patiently wait to be acknowledged. Sometimes the other boy appeared to say something off-handedly polite before dismissing Oliver. Once a boy stepped on Oliver’s toes – Oliver played it off by laughing and hooking a thumb at the kid as if to say this guy’s a real card!
Another time, a boy said something that made Oliver deflate like a botched souffl. He slunk onto the bus, pressed his forehead to the window and didn’t speak the whole way home.
Oliver’s most vivid creation was his best friend, Joey. Whenever Oliver felt overmastered, he would fill us in on Joey’s exploits.
“My best friend, Joey, he’ll beat your butt quicker than you can float a boat. Nobody better mess with me or when Joey finds out, he’ll go, ‘Let me introduce you to my two friends…'” Oliver would flex and kiss his right bicep. “‘Thunder …” – he would flex and kiss his left bicep – “… and Gus.'”
Joey didn’t exist, of course, but everyone on the bus went along with it. Other kids had their own versions of Joey: the beautiful girlfriend from a distant town; the older brother who gave out illicit sips of beer. The prevailing sentiment seemed to be: Don’t burst my bubble, and I won’t burst yours.
To try to understand Fragile X, how it starts, what it looks like at the level of DNA, rather than symptoms, takes a lot of metaphors and similes and, even then, what we understand is at a distance, just an image of the real thing. Even the explanation can be seen as a metaphor, like Magritte’s painting, Ceci n’est pas une pipe – this is not Fragile X, just a story about what Fragile X might be.
“Fragile X looks like a pinch in the chromatin package,” says Dr. Christopher E. Pearson, senior scientist of Genetics and Genome Biology at the Toronto Hospital for Sick Children and associate professor in the department of molecular genetics at the University of Toronto. “Everyone’s DNA is packaged with protein, which forms chromosomes. Each cell has 46 chromosomes, making up your genome. In a genome affected with Fragile X, there’s a pinch at the edge of the X chromosome bundle – if you could grab the genome, shake it, you figure that little bit would fall right off. That’s why it’s called Fragile X – the anomaly itself looks so delicate.”
There is a poster on Pearson’s office wall of a genome affected with Fragile X. It’s a constant reminder of the enemy Pearson and his team are trying to conquer. The black-and-white photo was shot with an electron microscope, giving it a grainy look. Visually, it resembles uni, or sea urchin – or perhaps the two lobes of the human brain, elongated.
“There is a trough running between the body of the X chromosome, and the genome’s exterior looks incredibly soft, puffy, pebbled like orange rind,” says Pearson. The mutation hangs off the end of the genome on a pinched strand of protein, like a life raft moored to an ocean liner. It reminds me of the process of caudal autonomy, where a lizard severs its tail when attacked by a predator – as if the genome is attempting to quarantine the rogue mutation.
“If you look at our cells as a computer, our genome is the hard drive,” Pearson says. “If you copy the hard drive – which is what humans do through procreation – you need to replicate the DNA. To produce the FMR1 protein, you need to transcribe the DNA to produce an RNA. With Fragile X, there is a repeat in the DNA sequence. Consider the gene as a sentence that reads, ‘The cat ate the fat fat rat.’ In repeat-associated diseases, the mutation would make the sentence read, ‘The cat ate the fat fat fat fat fat fat fat rat.’ The regular DNA sequence is CGG: C, for cytosine nucleotide, G, for guanosine nucleotide, and G again. In Fragile X, the repeat is caused by methylation, the repeat expands and the cytosine becomes methylated. That turns the gene transcription off and it becomes C-methylated-G-G. Methylation turns the gene off, making it unable to properly transcribe the sequence. These repeated DNAs lead to loss of function.”
I ask how small the chromosome with the mutation is. “Immeasurably small. To even see the genome itself you have to bombard the sample with an electron beam. If you compare a person without Fragile X to someone who has it, the person without it will have 30cgg repeats, as opposed to 2,000 cgg repeats.”
I tell Pearson that I picture the mutation of Fragile X as a V: you start with two DNA helixes, side-by-side. One carries a small mutation; the other remains stable. A body forms itself around each helix, and the lives of each resulting human being will pursue very different tangents – thus, each arm of the V. A huge life divergence based on a tiny cellular divergence.
Pearson sees the mutation more as a tree. “You start with the roots,” he says. “If one tendril of one root is damaged, that small imperfection can travel up the trunk into the branches, the twigs, the leaves and fruit to damage the entire tree.”
Our conversation follows this line of analogy. We talk about computers and lizards and “Vs” and trees. We talk about pebbles dropped in pools of still water, creating endless ripples, and about layers of nacre forming round a piece of grit to form a pearl. We talk this way to anchor ourselves to some concrete understanding, because what we’re really talking about is unknowable – the mysteries of the human body and mind.
Carbon is the chemical building block of all known life. There are a static number of carbon atoms on our planet, no more today than when it all started. Things are born, they exist, expire, break down to component elements. Those same carbon atoms go on to be part of new life. All of us are cobbled together out of carbon cells that were once other things entirely. We could have a trilobite’s tail in our elbow or a molecule from Attila the Hun’s mustache in our eye.
If you back up the whole of human history, put the evolutionary arithmetic in reverse, it renders down to just this: hydrogen, oxygen, nitrogen, carbon. Four nucleotides, too: adenine, cytosine, guanine, thymine. The rule of four. Every plant and animal, insect, human. Any creature to have taken on life, grown, crawled, run, learned, known, felt, loved. As those elements networked into more complex helixes, human life diversified. Different skin colours. Hair. Eyes. Some people could be born lacking the ability to walk, or smaller than average or with conditions effecting their abilities to learn or interact. Other people could be born to perfect standard and turn into humongous failures, despite their good fortune.
There is an old Ashanti proverb: “We are the children of eggs.” But all eggs grow differently. Sometimes the deviation is so small, an imperfection in the DNA helix so tiny, an electron microscope reveals only a shadow of it. Something so fragile it looks as though you could simply shake it off the chromosomal chain.
It can be difficult to accept percentages. No matter how small those percentages may be – measurable only in angstroms, if at all – ultimately, they do affect someone.
Josh’s house was my last stop of the day. One afternoon, as I was unstrapping Josh’s wheelchair from its tie-downs, his father, Kevin, came out to the bus.
“Well,” he said to his son. “Did you ask Craig?”
I got the impression that whatever Josh was meant to ask me, it had been a topic of some discussion in their household. A little sheepishly, Josh said: “Would you like to go to a movie sometime?”
I wasn’t sure that I did, if only because I wasn’t certain it was right. A 16 year-old hanging out with a 33-year-old bus driver seemed … well, a bit weird.
But how was I to say no? I didn’t want to say no.
It became a semi-regular thing. Josh and I would go to the movies or the bookstore or lunch at Boston Pizza. I’d pick Josh up at his house. Boxes of medical supplies were stacked inside the front door. A motorized chair ran on rails up and down the stairwell to ferry Josh to bed and back. Kevin lent me his minivan, which had a ramp and tie-downs for Josh’s wheelchair.
There were obvious differences to hanging out with Josh. If the waitress set his water glass too far away, I’d push it close enough for Josh’s lips to reach the straw. At the movies, I’d pour popcorn from our bag into the child’s-size box that sat on Josh’s lap and, afterward, brush off the popcorn that had fallen onto his wheelchair frame.
On the bus, the other kids helped Josh out, too. They’d reseat his baseball cap when it got knocked askew going over a bump. Sometimes Gavin turned down the collars of his shirts.
Josh would’ve preferred to do more for himself, but some of the complications from his condition cause degenerative issues; when he was little he was able to walk with help. Adding to everything, Josh had been in a serious accident that killed his mother and caused even more damage to his pain-wracked body. There had already been many surgeries on his spine and legs. He’d had Botox injected into his hips. Pick any square foot of Josh’s body and calculate how often its pain receptors have been activated, the nervous system overtaxed. It would exceed all physical trauma most of us have experienced in our lives.
Many teenagers are anomalies, but Josh is a paradox: an old-young teenager. But the ways in which Josh was older influenced the ways he was simultaneously younger. His world was small, controlled. His homecare aide helped him get dressed in the morning and his bus driver took him to school, where another aide shadowed him throughout the day. A small army of doctors, physiotherapists and caregivers abetted his father to form a 24-hour cycle of care.
“Once I got cross at my father and wanted to run away,” Josh told me. “The front door was unlocked, but I could never make it down the front steps, so I couldn’t even run away. Usually, when I get angry, I get frustrated and start to cry.”
Many kids who rode the special-needs bus occupied a similarly small and ordered world. Some spent so much time at the Alberta Children’s Hospital, they knew the doctors by name and compared notes on the best cafeteria chow. Their days were a carousel of operations, specialists, “wish foundations,” physiotherapy and counselling. They took Prozac, Effexor, Zoloft, Adderall or a cocktail of mood-alterers. They had young bodies with old scars.
Josh desperately wanted friends his own age. Buddies to hang out with at the mall, a girlfriend who played volleyball. What he got was his father, his eight-year-old sister, Erin, and his bus driver. At first you wondered why that was – Josh was a great kid, funny and smart – but, in time, it dawned.
Josh simply wasn’t like other kids his age. And not just physically. What were kids Josh’s age doing? Well, they were learning to drive. They were filching a bottle of peach schnapps from their folks’ liquor cabinet and getting piss-drunk at a bush party. They were playing sports. They were bonding. Most of them were free – simply physically free – in a way Josh was not.
Josh couldn’t play sports. Josh couldn’t drive. Since it was a drunk driver who had killed his mom, alcohol held no appeal to him. He loved books and movies but his favourites tended to be obscure: one of his favourite shows was Red Dwarf, a sci-fi show that was popular in Britain in the 1980s and ’90s. Ultimately, his scope of activities was pretty narrow. Most bush parties aren’t wheelchair-accessible, and Josh’s dad would have to drop him off and pick him up. Teenage rebellion and parental supervision aren’t exactly bosom bedfellows.
Anyway, it wasn’t in Josh’s nature to rebel. Rebellion is something kids do to gain that necessary separation from their parents and the system of care that gets built around them as kids – but Josh and the other kids on the bus would need that system a lot longer than others. Some would need it their whole lives. Their parents knew it, and I think the kids knew it, too.
Sure, both sides probably wished it could be different sometimes: the freedom that comes on both sides from breaking that bond of dependence. But you can’t go on wishing all day. Some things are just the way they are.
But that didn’t stop me from wondering how things could have gone, because the cut was so thin, you know? Measurable in fractions of a millimetre, in heartbeats and in microns. And sometimes the cut is unmeasurable, really, because you get into notions of fate and possibility, ephemera that have no weight or substance and can only be guessed at.
Josh’s mother had toxemia while pregnant, resulting in an accumulation of carbon dioxide in her bloodstream; her doctor recommended a Caesarean section. During the procedure, her blood vessels constricted and the carbon dioxide concentration skyrocketed. Josh’s lungs reflexively expanded while still suspended in the amniotic sac, hungering for air that wasn’t there.
A human being’s cerebral hemispheres begin to corrode approximately one minute after our oxygen is cut, a condition known as hypoxic ischemic encephalopathy (HIE), which leads to basically, black holes chewing into the fabric of our brains.
If Josh had had been given a few extra seconds, he may only have been born premature. He could have grown naturally and his life could have mapped out differently. He may have numbered amongst the faceless teenage hordes that filed out the school doors every day, oblivious to the riders on Bus 3077. His interests could have been more in keeping with his peers: instead of obscure British sitcoms like Red Dwarf, it could have been glory-of-war video games and Kawasaki motorcycles. Josh could have been the silky-smooth wide receiver with the crazy-glue fingertips; his girlfriend’s pleated cheerleader’s skirt could have been dancing round her legs as she waved to him from the practice field. His fast-twitching muscles could have exploded as he ran to meet her, sprinting past a bus where, on a different lifeline, he would be sitting in a chair strapped to the steel lattices that ran along the floor.
There were signs in the bus hung by the company.
If You Are Being Bullied, Tell Your Driver.
Very little bullying happened on my watch – there was none of the ingrained physicality common amongst teenagers, the purple nurples and wet willies, the purposeful invasion of space and those feigned “made-you-flinch” punches.
This didn’t mean the kids were exempt from it. The kids on my bus occupied the lowest rung of the schoolyard food chain and some of their contemporaries hadn’t yet developed the conscience that dictated you do not hunt the easy meat.
One spring afternoon, I was driving Bus 3077 through the high school parking lot after school. Pubescent beefcakes in football jerseys were packed into Jeeps, circling and circling the lot with death metal pouring out of their car speakers. Other guys affected carefree poses against the hoods of parked cars.
The boy who did it was handsome in the commonplace way: windblown hair, no acne, cheekbones that appeared to be chipped out of schist propping up smoked, aviator-style sunglasses. As the bus passed, he made that classic “disabled” gesture: one arm cocked chicken-wing style between his nipples, wrist dangling limply, he thumped his hand spastically against his chest. How had that chest-thump somehow become a universal gesture? Was there an International Convention of Assholes in Switzerland where it had been ratified? His voice drifted through the open bus windows.
“Deeeerrrr, there goes the retard bus …”
Retard. No word in our vernacular is quite so nettlesome. Unlike “nigger” or “faggot,” both rightfully out of bounds, somehow “retard” has become acceptable in certain connotations. The Black Eyed Peas sing their party anthem, “Let’s Get Retarded” – later amended to “Let’s Get it Started” – where “retarded” is shorthand for unbridled behaviour. I heard two young girls trying out the newest iPhone app, saying: “This is just retarded” – by which they meant it was fantastic, amazing. But they weren’t reclaiming the word because, of course, neither one of them was mentally disabled.
I jammed the transmission into park and got out. I’d seen that same gesture, heard that same word tossed around within earshot of the bus before and let it go. But this time it needled me – maybe because the guy was so brusquely dismissive, barely even committing himself to the insult. It was as if he could hardly be bothered to thump his chest for the cheap laugh it would earn him.
“What did you do that for?” I asked him.
“That move. Hitting your chest. It’s funny?”
The kid shrugged with a sideways smile, as if to say: Man, why sweat it? I stood there in my too-big reflective safety vest. We were out in the open air, a lovely spring day, but everything felt claustrophobic. Adrenaline twined up my spine like a fast-rising fairytale beanstalk.
“Ever seen your father get punched in the face?” I said. “How about this: you show up with your father tomorrow. The two of you make that move as I drive past. I will get out. I will punch your dad in his face.”
I’d sputtered out the final few words: “hi-hi-his f-fuh–fuh-face.” My adrenal glands had gone haywire. I’m sure the father would be mortified to hear what his son had done. But what if he showed up and actually made that gesture alongside his son – would I fight him? Absolutely.
“What was that about?” Josh asked once I’d settled myself back behind the wheel.
Oliver glanced at the boy in the sunglasses out the bus’s back window.
“Well,” he said, “he’s one tall drink of piss.”
The kids didn’t need my help or ever ask for it. You have to let that garbage go. If you go around threatening to fight everyone who makes fun of disabled kids, the sad fact is you’ll end up with your jaw wired shut before long.
Gavin was the only child on the bus who did not tell stories. It wasn’t that he couldn’t talk – he simply chose not to. Gavin was big for a 13 year-old, but he moved with precise, considered movements. He had a mop of dirty-blond hair and hard-looking hands. Carpenter’s hands.
He had a singular trait you might call “scent retention”: in the morning, he climbed aboard smelling of fabric softener and soap and, heading home in the afternoon, still smelled that way, whereas most kids his age smelled of sweat and dirt and the residue of whatever bacterial micro-sites they’d investigated.
Years ago, when a boy rarely spoke and showed precious little interest in the world around him, people would say he was “odd” or he “lived in his own world.” Nowadays, those behaviours have been collected and codified and given a name: autism. I thought Gavin was autistic for two reasons: one, the bus company printout claimed he was. Two, a great percentage of children who rode the special needs fleet had symptoms distinct to Autism Spectrum Disorder (ASD).
Physicians, parents and politicians often speak of an autism “epidemic.” The rate of ASDs, which come in a range of forms and widely varying degrees of severity – hence spectrum – has been accelerating rapidly since the early 1990s; some form of ASD is now estimated to affect one in every 110 American children … and nobody knows why.
There may not be a current consensus, but what agreement there is among the mainstream medical view says autism is a neurological condition possibly resulting from one or more genetic abnormalities in combination with an environmental trigger. But, in lieu of a biological marker being found, and the number of potential genes and triggers that could be involved is so huge, I doubt a definitive cause will be determined anytime soon. Even the notion that autism cases are on the rise is disputed to a degree, with some believing the escalating diagnoses is simply due to greater awareness of what autism looks like (the same can be said for Alzheimer’s disease, multiple sclerosis, cancers and a host of other conditions).
Gavin, however, did act like a boy with autism. He never spoke. He never met my eyes, except those rare instances when our gazes touched briefly in the riot mirror – and I wondered if that wasn’t simply a matter of two random variables colliding from time to time.
He had his rituals. Every day he’d get off the bus and circle the trash can in front of the school doors twice, even when the snow was so high, it formed a hillock around the can. He shaped his body into poses such as “The Scarecrow” – holding his arms out, crucifixion style – or “The Double Crab,” where he flexed his biceps like Jack LaLanne.
One afternoon, I dropped Gavin off and spoke with his father, Randy. He was shocked to hear I thought his son had autism.
“Gavin has Fragile X,” Randy told me.
Like Oliver? But they were such different manifestations. When Randy saw the bus printout, he snorted.
“Happens all the time,” he said. “People just don’t know. They slot these kids into the widest possible definition.”
One of Gavin’s three siblings had traits fitting them on the autistic spectrum. This had been especially difficult for Gavin’s mother, Beverly – in the earliest days, it was an article of faith among psychiatrists that autism was brought on by bad mothers, whose chilly behaviour toward their children led the youngsters to withdraw into a safe, but private world. In time, autism was recognized to have a biological basis, but this has not completely allayed the strange, rootless guilt many parents feel.
Randy and Beverly were active in advocacy groups for Fragile X and autism; they also belonged to several parental support groups for children with those conditions. Randy told me a story he’d heard at one of his group meetings.
“This guy’s family was in a motorhome, driving through Nevada at night. Everybody was asleep except the guy and his son, who has Fragile X and only spoke one or two words at a time. The guy was driving, the boy sitting next to him. He says he’ll never know what it was – his boy’s anxiety levels must have been low, or … something twigged. He started talking, stringing words together. Words his father didn’t realize he even knew.
“I guess the landscape spoke to him. It was beautiful, the guy said. But a one-off, too. After that night, things went back to how they were before.”
You could picture it. A father and son driving through the desert with the swelter dying out of the day, the plains unfurling flat and fathomless beneath a sky the tight-sheened purple of eggplant skin. As the headlamps burn phosphorescent holes into the darkness this boy who never speaks … speaks. What was so different that night? As a father, what could you do? Only take it for what it is.
“It could happen,” Randy said. “With Gavin or anybody. Any given day, any moment … right? It could happen.”
After a while, the children on my regular route were so familiar to me, and we had so much fun together, that I started to think: Why the heck are they even riding a different bus than the other students? Then Josh’s wheelchair would get stuck in a snowdrift, or I’d pick up a stray math test left on the bus by one of my high school riders and see equations I’d solved in the third grade and think: Oh, yeah. This is why. Still, I was sure Josh or Gavin or Oliver could ride a big bus and, most days, they’d blend right in.
But sometimes I’d work a substitute shift with children with serious, acute disabilities. I drove a nonverbal boy who snapped his body against his safety harness with such force, I could hear the compression of the leatherette upholstery: this horrible, high-pitched squeal. The boy wasn’t spasming, it wasn’t a tic – it was just the purpose-driven motion of his body. I’d been warned it was useless to try to stop him. The boy was still at that age where you could call him beautiful. Long, blonde hair and soft, vaguely feminine features. Buckling him in, I’d seen the angry darkened bruisework slanting down his collarbones.
Another boy wore giant noise-baffling ear protectors like you’d see at gun ranges. He was 16 and cried almost constantly. Whenever I asked him what was the matter, he stared at me, cleansed of all evident comprehension.
“He cries all the time,” his bus-mate told me. “He just … cries.”
When he wasn’t crying, this boy repeated phrases in an excited, urbane voice: “I’m having a lovely time” and “I’m very happy to be here” and “Come oooon down!” – a perfect mimicry of announcer Rod Roddy on The Price is Right. Once, when I braked too hard for a yellow light, he said, “I’m getting N-E-R-V-O-U-S. Don’t be silly, Arthur, you’re going to be just fine.” In time, I understood every word he spoke was cribbed off TV shows.
Glancing in the riot mirror, I’d be struck by just how handsome he was. I pictured him on a park bench, where a girl sat beside him. After attempting to strike up a conversation – “I’m having a lovely time!” – she came to realize this handsome boy’s personality was inaccessible not only to her, but to everyone.
Kids like this simply cannot be mainstreamed; it would be cruel to even attempt it. What you notice is the formation of two distinct streams within the school walls. Sometimes those streams entwine, as they are encouraged to, but, ultimately, they do run apart.
On the last day of school, I got to the bus yard early, poured a cup of coffee from the big steel dispenser and milled with my fellow drivers. A lot of them were retirees or single parents, which ensured plenty of photo-swapping: wallet-size kids and grandkids.
We donned our reflective safety vests and filtered out to our buses. I popped the hood and checked the dipstick, then seated myself behind the wheel, slid the key into the ignition and let the glow plugs warm. The engine caught with an earthy rumble, settling into that familiar diesel rhythm: tikka-tikka-tikka …
I walked between the bench seats with my head declined so it didn’t hit the roof; I failed to do so my first week and a loose rivet tore a gouge out of my scalp. After raising and lowering the wheelchair ramp, I passed back up the aisle, slapping the seatbacks to make sure they were bolted tight. I headed out with the broom to check the exterior lights and give the tires and exhaust pipe a solid test-whack.
School bus drivers perform the same safety check all over the world. Their buses are yellow in North America – the colour is actually called National School Bus Glossy Yellow – green in El Salvador, white in Ireland, blue in the Netherlands. This morning, and on any school day, this rainbow on wheels will transport millions.
Our buses exited the yard as a yellow flotilla, dispersing into the urban grid. A small number of smaller buses broke off from the fleet. Channel 1 on your CB radios, number one in your hearts.
My last day transpired the same as those that went before. I pulled up. The ramp lowered. The door opened. The kids boarded as they had boarded all year: in Converse hi-tops and snow boots and a Pronto M94 Power Wheelchair. In hockey jerseys, unbelted trousers and skinny jeans. They came with backpacks, comic books, chewing gum, drawings of princesses and cyborgs, iPods, skateboards, loose-leaf binders, video games, teeth-bitten pencils, cough drops, lunch sacks and hackey sacks. And they came with their adult-spectrum meds: Valium, Prozac, Tegretol, Seroquel. All came with their scars. All came with their hopeful truths.
In the mornings they often boarded tired or listless; in the afternoon they could be cranky or withdrawn. They rode because their parents told them to, and they obeyed.
I wondered what they would remember of that school year. Perhaps that night in January when a flash squall touched down, snow curling over the Rockies on a bone-searching wind that screamed through seams in the airframe. Snowflakes glittered in the headlights like a million airborne razor blades as I merged with the rural highway onto Macleod Trail. The moisture of our bodies fogged the windshield; I rolled down the window and wind howled with such force the tears forced out of my eyes were vaporized before they touched my ears. The tires lost traction on a strip of black ice and hit the rumble strips before returning to the tarmac. Fists gripped to the wheel, my knuckles became whitened humps – which was when Josh began to belt out the theme song to Red Dwarf:
“It’s cold outside, there’s no kind of atmosphere / I’m all alone, more or less / Let me fly, far away from here / Fun, fun, fun, in the sun, sun, sun…”
On that last night, after I dropped off the last student, I checked the bus for sleeping kids and clipped the “Empty” sign in the back window. I drove to the summer storage yard and parked my bus nose-to-tail with dozens of its kind. For the last time I radioed it in: “Bus 3077, checked and clear.”
Next year, the unit would be assigned to another driver, who would drive new kids. Metal carries no memory – we invest objects with significance, transferring some measure of our personalities into them, which may be why some places end up haunted and others sanctified.
I exited the yard with the knowledge that no perfect ending exists. The lives of everyone on the bus would progress according to their own imperfect plans. But we are all imperfect, if not by birth then, eventually, by age or circumstance or experience and, if anything, those imperfections make those who love us already love us even more deeply.
So if today is a school day and you’re out on the roads, it’s likely you’ll spot a “cheese wagon.” If you could, make a little room – it can be one hell of a time piloting these big rigs.
And, hey, we’re not transporting potatoes here, people!
We pass through your blessed existence bearing precious cargo.