Riding the Bus with My Sister: A True Life Journey

by Rachel Simon

  "That's what we do when we hurt people."

  "Thaz what you do."

  "But other people have feelings, right?"

  "I don't know."

  "What do you mean, you don't know!" I explode. "Other people matter! We can at least try to get along with each other!" I flee into her bedroom.

  Out in the living room, she turns her television up higher. I stay where I am, steaming at her window, clenching my fists. I will not go back out. I cannot. I breathe hard at my reflection, and past it, to the valley of row houses, their chimneys spiking up like fangs. I glance at her desktop and its feast of stickers waiting to decorate envelopes—teddy bears in tutus and smiling hearts and Beauty and the Beast—and I hate them all. I hate her Donald Duck sheets. I hate the Care Bear Christmas ornaments in the bathroom. This year is spreading out endlessly. Why bother? Why not just give up? I should just throw myself in my car and go home.

  But she's my sister, I remind myself, closing my eyes, and under all this anger, I do love her. And I promised her a year. Stupid! A stupid promise! I am not up to this task at all.

  I gaze out to the horizon, thinking, once again, How much is Beth, and how much is Beth's brain? Maybe it's time that I tried to find out.

  Late one afternoon at home, seven hours before I will be leaving our annual twinness behind to turn forty, I shut off my fax machine, turn off the phone volume, close the computer file of my latest writing project, boil water for peppermint tea, and go online. Of course, I encounter many sites related to mental retardation. I wend my way through them, so caught up that I miss the sun's departure and the day passing into night. In the dark hours, I learn at last about my sister.

  First I come upon The Arc of the United States at thearc.org, one of the leading advocacy organizations for people with mental retardation. I discover that 2.5 to 3 percent of the American population has mental retardation, which, based on the 1990 Census, means between 6.2 and 7.5 million people. That's a lot of Beths out there—twenty-five times as many people as those who are blind. One out of ten American families has intimate experience with mental retardation. That's a lot of me's.

  I learn that my old nemesis, the term "mental age," does have some merit. "The term mental age," The Arc's site says, "is used in intelligence testing. It means that the individual received the same number of correct responses on a standardized IQ test as the average person of that age in the sample population. Saying that an older person with mental retardation is like a person of a younger age or has the 'mind' or 'understanding' of a younger person is incorrect usage of the term. The mental age only refers to the intelligence test score. It does not describe the level and nature of the person's experience and functioning in aspects of community life."

  In other words, "mental age" does not mean, as some erroneously believe, that the clock stopped ticking in some people's minds when the hands reached two or seven or fifteen. Mental retardation is not a childhood that has simply gotten stuck.

  I observe that I too must alter my vocabulary. No longer is it proper to say, as I have all my life, that someone "is mentally retarded." As I discover on other websites, by using the new "People First Language," one focuses on the person first, the disability last, as in "a woman who has mental retardation," or "a man with mental retardation." The analogy is that people with cancer have cancer, they are not cancer itself; the disability is only one aspect of who they are. In addition, with People First Language, one can avoid using the word "retarded," which is too close to the familiar slur. In fact, some websites minimize the use of "mental retardation" by using as synonyms terms such as "developmental disability," "intellectual disability," and "cognitive disability." As I scribble down this People First Language, I realize that many of my acquaintances might disparage such linguistic changes as mere nods to political correctness, and for a moment I do, too. But then I think, Look at how many cultural barriers Beth has had to deal with throughout her life—and how many physical barriers people with other disabilities experience: sidewalks without curb cuts, restrooms lacking accessible facilities, cabs that refuse guide dogs. Altering the way I speak is nothing compared to what she, and they, go through almost all day, almost every day. And it is such a simple way to help transform the cultural landscape that it seems arrogant and misguided to resist doing so.

  Back at The Arc of the United States, I learn about the causes of mental retardation, a broad category that includes anything that impairs the development of the brain in utero, during birth, or in childhood. Among the causes that have been identified are fetal alcohol syndrome, childhood diseases, and genetic conditions such as Down syndrome. But, surprisingly, in one-third of all cases the cause of mental retardation remains a mystery, as it does for Beth. That figure swells to three-quarters when you're focusing on individuals with retardation that is considered mild.

  Ah! Here it is: mild. I dig in deeper and turn up delineations so fundamental that I am embarrassed to be just discovering them. I learn that mental retardation is classified in four levels: mild, moderate, severe, and profound. Mild, which accounts for about 87 percent of all people with mental retardation, my sister among them, refers to an IQ of about 50 to 75. To supplement my understanding, I go to a psychology database. Among the books I am referred to is Abnormal Psychology and Modern Life, by Robert C. Carson, James N. Butcher, and James C. Coleman. The title is familiar; I turn to my dust-lined bookshelves and there it is, one of the textbooks I picked up at the end of a recent school year, on the "Take Me" shelf in the building where I work.

  Here, I learn that people with mild mental retardation are considered educable, as Beth was, after my mother pressed the issue, and that "their intellectual levels as adults are comparable with those of average 8- to 11-year-old children." Wait a minute! I thought that whole mental age stuff was nonsense—but I read on. "Statements such as the latter, however, should not be taken too literally. The mildly retarded individual with a 'mental age' of, say, 10 ... is not in fact comparable to the normal 10-year-old in information-processing ability....The social adjustment of such persons often approximates that of the adolescent, although they tend to lack the normal adolescent's imagination, inventiveness, and judgment.... Often they require some measure of supervision because of their limited ability to foresee the consequences of their actions" (Carson, Butcher, and Coleman, Scott Foresman, 1988, p. 475).

  I find this explanation wonderfully clear. Would that I'd had this textbook when I was in college. No—when I was in first grade. I'd like to memorize those lines so I could repeat them in any conversation I have about my sister.

  As for the other levels, this book continues, people with moderate mental retardation, which refers to IQs between 36 and 51, were those I saw in the Trainable classes at school, and would have been Beth's classmates had the school system placed her where her IQ tests initially (and apparently shortsightedly) suggested she should go. Many cannot read or write, have very limited conceptualizing skills, and have poor motor coordination, which is evident in their clumsy movements; they can become partially independent in a sheltered environment. People with severe mental retardation, with an IQ between 20 and 35, have major problems with motor and speech development; and, although they can develop some hygiene and self-help skills, they will always be dependent on others for care. Lastly are people with profound mental retardation, which means an IQ under 20. Given their extreme deficiencies in adaptive behavior, their inability to master anything beyond the simplest tasks, their very basic verbal communication (if there is any speech at all), and their often severe physical disabilities, they need custodial care for life.

  A charge races under my skin. I am a detective on a trail. I am amassing a profile of what might as well be a missing person.

  Almost on a high as I pore over this book, and circle round and round the Internet, I lose myself for hours until—how had I failed to see that?—I spy the definition of mental retardation. It's right there, on The Arc's website. Not only that, but it is
at the top of the very first page I discovered this evening; it was staring me in the face from the start.

  There are three criteria:

  1. IQ is below 70–75.

  2. Significant limitations exist in "two or more adaptive skill areas," which means "those daily living skills needed to live, work and play in the community. They include communication, self-care, home living, social skills, leisure, health and safety, self-direction, functional academics (reading, writing, basic math), community use and work."

  3. The condition manifests itself before age eighteen.

  I find myself holding my breath in amazement, staring at 2: "adaptive skill areas." Shaking my head, I gaze at the list, as certain characteristics trigger specific associations for me:

  Communication: The many times when "I don't know" indicates that Beth truly has no idea what she thinks; Beth muttering to herself during conversations.

  Self-care: Her insistence on tempting pneumonia with shorts and sandals in cold conditions; her unbalanced diet, despite everyone's efforts to educate her about healthful eating and the harm that can come from ignoring it.

  Social skills: The way she resorts to nasty verbal attacks rather than diplomacy with the fat girl on the bus; her inability to read Henry's nonverbal and even verbal cues.

  Health and safety: Her reluctance to allow medical examinations; her denial of any possible medical consequences with "Thaz not gonna happen."

  Of course, anybody could have one of these behavioral traits, but there have to be two or more of these adaptive deficiencies, and there has to have been a pattern of these from childhood on, and—though it can't be known definitively without a test—there has to be the lower IQ. Beth meets all three criteria.

  I get it. This new information means that when I tutor Beth about street corners, or nudge her toward more appropriate attire for the weather, I should not expect instant assent or feel irate when I don't receive it. Indeed, anger is a foolish and pointless response when I should actually expect limitations. Especially when I factor in her stubborn personality. And even more especially when I consider that she's in a society that careens between bullying her and seeing her as a perpetual child.

  I look up. I am in my dark apartment, and it is midnight, and I think, how could I have known Beth for all these years, and just come to this realization now?

  I stare into the unlit room. I still have not untangled how much is Beth and how much is Beth's brain, nor whether, when she does not welcome new conversations, fashions, manners, boundaries, or concepts of space, it is because she cannot, or will not, or is simply not in a mood to open her mind at a given moment. I also have not ascertained how much, if any, of her self-centeredness is a result of her mental retardation. And, given the inextricable weave of nature and nurture, of self and society, that exists in all of us, it seems unlikely that I ever will.

  But now I do know that, like me, and the drivers, Beth is on a journey. It's just that Beth's bus chugs along a lot more slowly.

  I am shaky with insight. I want to tell someone; I need to. The first minutes of my fortieth birthday have already ticked by when I call Olivia's voicemail and leave her a message. I confess my ignorance. I spill out my relief. I tell her I have chased my loathsome feelings back into their pit.

  When I hang up, I expect to relish this triumph. Oddly, though, as I rise to microwave my late dinner, I feel only queasy. Yes, there was a missing person here; we were twins thirty-nine times before I even started to find out about Beth. I turn off my computer, and watch the screen go dark.

  Goodbye

  It is a sleeting February afternoon, exactly one month since Mom met the ex-con, and Max and I are hauling my trunk down the stairs from my attic room. He is bracing the bottom, I am clutching the top, and both of us are in shock.

  I am leaving, I keep thinking. I am going away from all that I know.

  When I glance down the dark stairs beyond Max to the first floor, I see fifteen-year-old Beth, standing with Ringo, looking up at us, her mouth agape.

  We are leaving because Mom has made it clear that we must. She wants to be with this man, and he doesn't want us around. Four days ago she told Laura to leave, and Max and I know we're no longer welcome, either.

  We are too numb to speak. The sleet outside seems to have moved into my heart.

  Dad is waiting in his car in the driveway to take Max to live in his apartment a few hours away in Pennsylvania. Not the mountainous place where we lived long ago, but somewhere new, near factories. Laura will join them there after she finishes her semester at a local college. He will help her rent a room around here until then.

  As for me, yesterday he drove to the boarding school that my friend Keiko entered last year and begged them for a scholarship. He was very persuasive, and they agreed. I am to move there this very night. My entire life is changing in one day.

  No one made plans for Beth. It seems a given that Mom will continue to care for her.

  Beth watches as Max and I lug the trunk across the living room toward the front door. Laura is gone, having driven off with her car packed to bursting.

  We don't see Mom. After we put this plan to her an hour ago—a plan Dad and Laura and I came up with in the last four days, a plan Max didn't know about until we told him this morning, and Beth didn't know about until fifteen minutes ago—Mom retreated into her bedroom with this new man.

  "Beth, could you hold the front door open?" Max asks.

  She shuffles forward in a daze. Her brother and sisters are leaving. She does not grasp why, and neither, really, do we. It is all happening too fast.

  Sleet gusts in as she opens the storm door. Max and I cart the trunk past her, and I peer over at her face. She looks perplexed and alarmed, as if she's just dropped her biggest jigsaw puzzle.

  Outside, Dad heaves my trunk onto his car roof and straps it down. "That's it," he says.

  We sprint back to the house. Beth remains in the front doorway, Ringo at her side. Everyone says goodbye. I reach forward and do something I am not accustomed to: I hug her.

  "See you soon," I whisper, keeping cheer in my voice. Though how soon it might be, I can't say. I haven't yet learned to drive.

  She does not answer as we release each other. She cannot find any words.

  We race back to the car. It is packed so full of our stuff that things start to fall out when I open the front passenger door: my turntable, my typewriter, my stuffed rabbit. I tuck them back and then get in.

  Dad throws it into reverse, and I press my face to the window. Beth is standing behind the storm door, looking out, holding Ringo in her arms. I lift my hand and wave. Slowly, she raises one of Ringo's tan paws to wave back.

  Then I turn away. I cannot look at her, alone in the doorway. We drive off into the February gale.

  July

  The Optimist

  1:15 P.M. Bailey docks the bus outside Kmart and allows himself a restrained yawn.

  "Number thirteen," Beth says in a teasing tone.

  "No, it was not," he kids right back. "It was only eleven."

  She shakes her head. "Thirteen."

  Bailey waves his hands. "What do I know? I'm just the driver." He's an apple-cheeked, melon-bellied man of medium stature, whose bushy salt-and-pepper beard strongly hints that he's recently sighted forty in his headlights. His eyes, too, disclose personal information; although they spark with humor from time to time, there are pouches beneath his lids, evidence that he craves sleep. He reaches for his jumbo-sized cup of coffee, tips the rim toward his lips, and misses, splashing a brown stream down his blue driver's shirt. Dabbing at the cloth with a napkin, he steps out of his seat. "Okay," he announces, facing the aisle, "nobody sees that I spilled coffee on my shirt, right?"

  Passengers look up. Some carry umbrellas, prepared for the summer thunderstorm that's been predicted.

  "I don't see nothing," a man in a Hawaiian shirt humors him.

  "What coffee?" a young mother in a sundress says, playing along.
<
br />   "It makes a good design" Beth says. "Now you never need a tie."

  "Why, you—" Bailey says, and she wards off any retaliation with a laugh.

  She turns to me. "Thaz Crazy Bailey."

  "Why'd you give him that name?" I say.

  "'Cause he's fun. He counts my yawns. Sometimes I fake yawning to trick him."

  "It's stuffy in here," a teenage girl applying lipstick says.

  "We got five more minutes at this stop," Bailey says. "How about I open the sunroof?"

  He positions himself beneath a hatch in the bus ceiling and pushes, grunting, until it pops up. In whirls a breeze, carrying the moist, earthy scent that portends a shower.

  Bailey, Beth confirms, is indeed tired. His adolescent kids have grown fond of mischief lately—every day brings a complaint from a neighbor, a fresh variation on sulking from the accused—and last night being no exception, he found himself contending with one of his kids well past his desired bedtime. "I don't give up," he says. "I keep up the hope that it'll work out."

  A few days every week, Bailey, like many of his driving cohorts, works a split shift. That means he climbs behind the wheel when the run first gets under way, often at four or five A.M., and parks back at the terminal at eight or nine A.M. Then he's off duty for a few hours, free to rest at home if he wishes. After lunch, he returns to the driver's seat, wrapping up by six or seven P.M., when most of the buses turn in for the night.

  "Do you like that schedule?" I ask him. He is standing beside his seat, blotting the coffee stain, to no avail.

  "Most of them do," Beth offers.

  "You bet," he adds. "But one thing makes it inconvenient. It keeps me from being home in the morning when my kids wake up for school." Forgetting to contain his fatigue, or even clap a hand over our view of his dental fillings, he commences a lion-sized yawn.