excerpted from At Home in the Land of Oz, by Anne Clinard Barnhill
“Birds fly over the rainbow…”
Sitting in the back seat of my parents’ car made me feel like a kid again. My sister, Becky, was perched behind Mother, and I took my usual spot behind Dad. My parents, though smaller and grayer, still reigned over the front seat, dispensing Cokes from Dad’s six-pack cooler, conversing in the rising and falling tones so familiar from childhood. Becky and I still teased and laughed in patterns established thirty years ago. I kidded her about stealing what was in her pocketbook and she responded with feigned alarm. I called her favorite Monkee, Davy Jones, a little chimpanzee and Becky yelled, “He is NOT!” I told her she was a heartless woman, fickle to boot, for changing her favorite Monkee from Micky Dolenz to Davy. She groaned and gritted her teeth, saying “I couldn’t help it!” under her breath.
Playing those old games again reminded me of long trips with Becky, the two of us sequestered in a universe of our own, separated from the grown-ups by what then seemed an enormous distance. We’d count the cows; I’d tell her stories; and I’d try to teach her the alphabet game, the one where you picked out the letters from road signs. Unlike most siblings, my sister and I never fought. She was six years younger, so we didn’t have the same interests, nothing over which to disagree. Besides, she preferred talking in that singsong voice of hers, asking questions over and over, giggling at things I couldn’t share. She never minded when I stopped trying to entertain her, the way most little kids did. I was the one who desired games, conversation, intimacy. She was content to return to her own special realm, a world no one else could enter.
Now we found ourselves in the same spot, together again in the back of the car, driving with the folks, the four of us linked by my sister’s problems, her unruly life. That part hadn’t changed over the years, though Becky and I had each grown in different ways. In my own life, I was navigating the way toward middle-age and trying to find my place in a house empty of children. My three sons were grown, on their own. I even had two new granddaughters I intended to cuddle and spoil to my heart’s content. I was trying to carve out a writing career from the stuff of my life, having quit my job as a high school teacher ten years earlier. I hoped to discover new activities to share with my husband. And yes, even rekindle romance.
While I struggled with the poignant emotions that mark mid-life, Becky tangled with her own problems. On the surface, her life looked almost perfect. She took horseback riding, ballet, aerobics twice a week. Each Wednesday, she went to the beauty shop for a haircut and manicure. She worked one day a week at Burger King and never had to worry about money. She owned more clothes than I could ever imagine possessing and she took a vacation twice a year to some fun-sounding place like Disney World or the Outer Banks.
But I had the one thing Becky lacked, the one thing she wanted more than anything else. I was in charge of my own life. I made my own decisions and steered my course as much as any normal adult could. Becky desperately desired that power.
My father put the car in reverse and drove from the driveway of the brick ranch where Becky lived. She gritted her teeth and made a low hum, sure signs that she was nervous. Her hands shook a little as she held them, one on top of the other, like hands folded in prayer, but turned sideways.
“Tiny,” she said under her breath. “So tiny.” Her voice scrunched up so that when she spoke, she sounded like a young child. Her voice was a low monotone when she conversed with people, but when she talked to herself, her conversation became melodic. She hit a certain rhythm, a slow iambic pentameter with the last syllable toned lower than the previous ones had been. I think she interrogated herself to comfort whatever was troubling her at the moment. After all, the iamb mimics the human heartbeat. Perhaps in some way, she was returning to the comfort of the womb while she worked things out in her mind.
When she babbled, she looked the way a small bird might look if it could speak. Her head bobbed from side to side in that same, quick way. This other-worldly motion often drew stares from strangers, looks of confusion that Becky never noticed, but I did. I was used to people checking her out, curiosity on their faces, amazement. I’d long ago recovered from the uncomfortable feelings such gaping caused. The judgments of people who didn’t know me, or didn’t know my sister, simply ceased to bother me.
Of course, that had not always been the case. Sometimes, being with Becky had been embarrassing. When I was a child, other kids would ask me what my crazy sister was doing when we were out playing in the yard. Becky would be flipping her hands against some plastic toy, a ball most likely, keeping it in the air for up to a half-hour at a time. Her flipping, referred to as “flapping” in professional terminology, was typical of autistic children, though we didn’t know that then. She’d fling her fingers against whatever she was attracted to, brushing the object gently at first while listening to the sound her fingers made against the material. All the while she’d croon to herself, her voice going up and down, her legs moving in a skip-like fashion keeping time with her hand movements. I’d say casually, as if her behavior were the most normal thing in the world, “Oh, she’s just flipping.” That would be the end of it. I learned early on that if my attitude toward Becky was one of acceptance, other people would be more likely to accept her, too. Loving Becky became a kind of litmus test for my friends and boyfriends: if they couldn’t find the beauty in her spirit, then I couldn’t see much loveliness in theirs. Being Becky’s sister taught me to select only the best kind of people for friends.
I’ve been married twice, the first marriage lasting four years, the second still going strong after almost thirty years. While the men differed in every other aspect, both husbands have been generous and warm to Becky, as have my women friends. Becky has bestowed nicknames on her favorites-Emmie is the “Coffeemate” because they both enjoy that beverage and I don’t. Kathryn is “Dental Kathryn” because she’s had twenty-three root canals, something we all regard as a record. My husband, Frank, is “The Dentist” because, as a great and courageous gift to Becky, he sang the lead in a shortened production of Little Shop of Horrors, Becky’s favorite musical. The Dentist, played by Steve Martin in the movie version, is Becky’s all-time favorite character, and to see her brother-in-law sing the familiar songs dressed in a dental coat, then leather jacket, was a moment of pure joy. And though Frank had never sung a solo in his life, he made it through the performance, something he would never have tried if not for his desire to please my sister.
Pleased as she was though, to this day she reminds him that he mixed up a few of the lines. Then she corrects him, giving him the exact lyrics, adding, “That’s all right. I forgive you.” And though he loves her, is kind during her brief visits to our home, he has confided to me that living with Becky on a permanent basis would drive him insane. “Those constant questions and the way she talks to herself all the time—it gets on my nerves after a while,” he confessed once after a three-day visit. The fact that I utterly devote myself to Becky and her needs while she’s at our house contributes to his unease. I suspect he prefers to have that spot for himself. Yet, he remains willing to let me handle Becky in my own way. He has accepted us both for better or worse.
My first husband, too, was invariably kind to Becky. One Halloween, he created a huge black mustache out of cardboard so Becky could dress the way she wanted for the occasion. He never once questioned her desire to be a mustache; instead, he set about making her dream come true. Becky has that rare capacity to experience the moment, as completely and as joyfully as humanly possible. Friends and family go to extreme lengths just to bring her to that point of ecstasy.
Becky never stopped caring for my first husband, though he and I had a bitter parting. Unfortunately, he cut off all contact with her after the divorce and never bothered to explain his actions to her. She still refers to him as “the original Tall One,” and she likes to recall his “giant hands” which, in her frequent comparisons, made hers look even smaller than usual.
She’s always loved her petite hands and enjoyed holding them up to mine (or anyone else’s) to compare, pleased that hers were smaller. She’d been an abnormally little child and grew into a short woman, not reaching five feet. We’ve had numerous conversations about her stature, discussing the differences between dwarves and midgets, where she might fit in on the scale of the “height-challenged.” She is proud of her size, considers herself “almost a dwarf” and seems to take comfort in the thought.
Interestingly, while browsing the Internet recently, I discovered a website created by a woman who considers herself “an elf.” This woman suffers from the same disorder as my sister. She says that being “an elf” is like being an alien—constantly having to learn customs and language, manners and communication. Learning these things in our culture does not feel natural or particularly comfortable to this woman, much the same way Becky has trouble figuring out the rules of polite society. From childhood, people told the woman that her tall thin frame and her sculpted ears make her look like an elf. She writes that she doesn’t feel she belongs with humans, so she proclaims her “elf-hood” with pride, much the way Becky claims a kinship with dwarves.
Sitting beside Becky in the car, I watched as she studied her hands, pressed them together hard until they shook a little.
“Nervous, Beck?” I reached for her, rubbed my thumb over her palms.
“A little.” She allowed me to massage her hands for a brief moment, then pulled them away.
“Do you think they’ll choose me?” Her voice was low and I could hear the fear in it.
“I don’t know. They’re choosing six out of ten people. You have a good chance, but I can’t promise.” I knew she would never understand if she weren’t selected. She’d be hurt, feel rejected no matter how many times it was explained to her. My head began to ache.
As always, being with Becky brought to the surface feelings I’d rather remain buried deep inside. She wasn’t happy in her current situation, and I couldn’t stand to think of that. We shared so much pain from our past—the frequent separations, her inability to “fit” into the usual nooks and crannies of childhood, certain moments branded in my memory—I shook the gloomy thoughts from my head and tried to focus on the moment. Today was a red letter day for Becky, one she’d awaited for a long time. I didn’t want to upset myself with memories gone by. Now was the important time. Today, my sister was going to interview for a new life.
I could tell she’d taken special care with her appearance. She’d chosen a royal blue pantsuit that matched her eyes and set off the blush in her cheeks. Her hair, cut as short as she could convince the beautician to chop it, was still damp from shampooing and had a slightly medicinal odor. But then, she always smelled like that, as if she’d been sprayed all over with a very light disinfectant. The scent was strong when you entered her house and it clung to Becky when she ventured out into the world.
Her face, small with delicate features, not at all like the slightly distorted faces of people with Down’s syndrome, would have been pretty if not for the blankness usually found in her eyes. But today, her eyes were bright. Today, there was life, even excitement in them.
But you’d never mistake my sister for someone “normal” because of the way she held herself: head down, never looking directly at anyone, body a little hunched as if it couldn’t quite find its place in the world. I glanced at her again because she was emitting a loud noise, much like the sound of a lawnmower that’s running out of gas.
She was grinding her teeth, another indication of her anxiety.
“Quit that, Becky,” my father said sternly. “Have a lifesaver.” He handed one back and Becky plopped it into her mouth.
“Thanks,” she muttered, her voice flat.
She began talking to herself, repeating questions over and over. She asked about herself and whether or not the interviewers would approve of her. She didn’t expect an answer just yet. She would address a person directly if she really wanted a response. Now she was mulling something over, working it out in her own mind by a constant stream of inquiries that twisted through the air like a strange, surreal song. Asking questions, whether to herself or to someone else, was Becky’s way of conversing. She’s done it forever and I was used to the peculiar rhythm of her speech.
“Is she a nice person? Will they like her? Will they pick her?” She’d switched to the third person, an old habit from childhood. While this may seem odd, it wasn’t to me. I could remember when she always talked about herself using “she” rather than “I”. This distancing is common among people with autism. Becky only reverted back to third person when she was feeling especially vulnerable. I knew how badly she wanted this new beginning, and I ached for her. She continued her litany until my mother turned around and tried to explain everything.
“Honey, it’s like this. If they pick five people who like rock-and-roll music and they are looking for a sixth person, would they choose someone who liked rock-and-roll music or would they select someone who enjoyed Beethoven? They’re looking for people who have similar temperaments and interests.” Mother’s soft voice had a calming effect. She smiled at Becky and I wondered how she still managed to have patience with an adult daughter who would never really grow up. But then, she’d always tried to manage my sister with kindness, even when my sister drove her to distraction with her incessant questions.
“This is the place, I think,” Dad said as he pulled the car into a driveway. The asphalt led up to a nice brick home with sliding glass doors. Dad found an empty slot next to a van with METHODIST GROUP HOMES printed on the side. My parents got out of the car. I leaned over to Becky and whispered, “Remember, be friendly. Talk. Look ’em in the eye.” I gave her arm a little squeeze.
“I will, Jet.” “Jet” is the pet name for me Becky coined in childhood. She explained it to me in those days, saying the shape of my face reminded her of a jet airplane. I couldn’t see the connection because jets were angular and sleek and to my mind, my own face was chubby and round. But I was happy she saw me that way and laughed when she sometimes sang her first original composition, “Jet-shaped Face,” composed in my honor. I’ve been nothing but Jet ever since.
I watched as she opened the car door and walked toward her future. I sat for a moment, alone in the back seat, remembering our past.