A Thorn in My Pocket: Temple Grandin's Mother Tells the Family Story (16 page)

In the reception hall I meet the head nurse who takes me on a tour, first to a “closed workshop,” by definition a workshop no outsider sees. Seated at a long table is a group of the more retarded stuffing mailers into envelopes and sealing them. From now on, when I throw out advertising mail, I will wonder who stuffed and sealed those envelopes.

In another workshop rows of the severely retarded are pulling apart sterilized horsehair to be stuffed into new mattress covers. The old, urine-soaked horsehair tangles and mats in the sterilizer, and has to be pulled apart by machine. The head nurse, whose dedication springs from her devotion to a retarded brother, has discovered that her patients like to pull it apart by hand. She’s set up this room for them, told them this is to be their job.

“In life everybody has a job. Your job is to pull apart the horsehair.”

“Yes! We want a job, we want to be like everybody.”

“Then you must learn to use the toilet and dress yourself and make your bed. That’s what everybody does.”

Rocking and giggling, they agree. “Yes, that’s what we want.”

“Then, after you dress, you have breakfast, and then you walk to work in another building. Everybody goes to work in another place. That’s what ‘going to work’ is.”

“Oh. That’s going to work?”

“Yes, and you’ll earn money. Everybody earns money.”

“Money?”

“See? This is money.” She shows them nickels and dimes. “You can buy candy.” Thus with coaxing, penny change, and long patient hours the nurse has drawn her charges out of their idiot lethargy and given them the rudiments of human purpose.

“These people aren’t capable of much,” she tells me, “they’re very retarded. But you can’t just leave them to rot. When I first came here they were sitting on benches around the room, naked. ‘Why aren’t they dressed,’ I asked? The staff said ‘It’s no use to dress them, they tear their clothes off.’ So I said, ‘If you’re going to treat them that way, why don’t you put a drain in the middle of the floor and shut the door on them?’ You wouldn’t treat a dog that way.’”

Then she explains, a little embarrassed, “You see, because they were naked, they had nothing to do except masturbate. Well, I thought, if they like to masturbate, I’ll use that. I figured the horsehair from the mattresses would feel to them like pubic hair. And I thought, they’ll like the feeling of pulling it apart. We won’t turn the pulling job over to a machine, I’ll make it into a job for them. And pretty soon, because they like their job, they won’t tear their clothes off. And it worked, I taught them to dress, to use the toilet, to make their beds, to walk to work, and to do their job, their horsehair job, right here in this room. And over time I’ve seen their faces change. People think the retarded don’t feel anything, but that’s not true. As soon as they feel they matter, they lose their vacant expression and begin to look human.”

I ask her if she’d be willing to tell her story for the WGBH documentary and reluctantly she agrees to it.

We walk down one more endless hall. Bang! goes a linen closet door and out storms a stout middle-aged woman with a shaved patch in her ragged Dutch cut and a freshly healed scar: tokens of an epileptic seizure.

“Well, she can go to hell and kiss my arse!” She sees the head nurse. “Honest to Gawd, Miss Essie, I never lied! So help me! Cross my heart and kiss the virgin I didn’t take ‘em!”

“Shh, shh, Abby. Hey, what’s got into you today?”

“Honest to Gaaawwd,” howls Abby. “I get so miserable, I just took a little piece. Nobody loves me—nobody writes me—I get so lonesome—don’t get no letter—don’t get no candy.” The howl rises to a wail. “She gets packages every weeeeek!”

“You could of bought candy. You got last week’s wages.”

“I don’t want wages—I don’t deserve ‘em—I was naughty and Dr. MacIver bawled me out for throwing the thermometer in the toilet. Honest to Gawd, Miss Essie—I didn’t mean to break it, only Donna jostled me—Oooh I hate her! She’s a mean bitch and she can kiss my—”

“Abby—you didn’t learn those words from me.”

“Aw Miss Essie, you’re a kidder—everbody knows those words—everybody knows ‘em from the time they’re kids. Gawd I love you, Miss Essie—I’m gonna give you a kiss and I won’t take no more chocolate ’cause I’m gonna be a good girl for you and get my badge.”

The institution doctor comes down the hall. “Hi there, Abby, how’s your boyfriend?”

“Aw Dr. MacIver, I got no boyfriend. Who’d want a funny lookin’ girl like me?” She shows me her scar. “See? I got this big place here where I bang my head—come over here—you can’t see me from over there!”

“Roy’d want you.”

“Aw Dr. MacIver, you’re kiddin’—how’d you know about Roy?”

“I got eyes in the back of my head.”

Later that month the WGBH crew brings sound equipment, lights and a camera into the horsehair room. The head nurse tries to tell her story, but the camera unnerves her. I sit under it.

“Don’t look at the camera. Look at me, tell your story just to me, just like before.”

“I’m worried I won’t speak the right grammar, I’ll make mistakes and sound stupid.”

By this time all the excitement over the lights and camera has stirred up her patients, the horsehair pullers. They stop their work, begin to rock and call out—to me, to the director, the camera man, the sound man—“Hey nursie—” Everybody is “nursie.” “Take my picture. You going to take my picture?”

The nurse struggles to pull herself together, to pull them together. This is her chance to show the world that her people are worth something, that her brother deserves to be called “human.”

“You’re not going to be babies,” she cries out. “You’re not going to rock. Stop it! Do you hear me? Everybody—you pull hair!”

But they can’t. The camera, the lights, it’s all too strange. Forgetting her careful lessons in purpose, the entire room begins rocking back and forth like a bunch of cuckoo clock pendulums.

The nurse leaps up on a bench. “Come on!” she hollers, her voice cracking. “Are you men or are you babies!” One man stops rocking and looks up at her.

“Baby?”

The footage is useless. We move the equipment to another ward. Again the occupants call out.

“Hey Miss, come here Miss, look at me. See my funny little chicken arm. Brawk! Brawk!” He shows off his arm withered to nothing by brain damage, folded into his chest like a bat’s wing. “Brawk, brawk, brawk. Didja ever see anything like that before? Hey Miss, you gonna take my picture? Miss, look how good I can do with my other arm.” He clutches at me with his good arm.

“Let go, Billy.” The nurse takes his good arm. “She’s got your picture. That’s a boy, let go.”

In the next ward are humans so damaged, they’re trapped for life in a birth-bruised chrysalis. Powerless to unfold, they lick mush from a spoon and smell the endless smell of urine and Lysol.

That’s the end of the picture taking.

The next day I come alone to thank everybody.

“If you’re going to write about the retarded,” says Dr. MacIver, “you shouldn’t leave without looking at the creatures.”

“There’s worse?” He nods.

“I’ll go with you. It can be a shock.” Like many country Yankees, he has a lantern jaw and few words.

The ward is sunny and silent, save for the crooning of an ancient idiot woman who sits by the door cradling a baby with a monstrous head, rocking it.

The doctor walks me round the ward. A towheaded toddler smiles and stands up in his crib. I look at the stumps of his baby hands grasping the crib rail. The ends of his fingers from the middle knuckle are gone. There’s nothing there but blobs of flesh, wet and soft.

“He’s eaten the ends of his fingers. He has no sensation of pain.”

In the next crib lies a tiny rigid child of six, perfect in every proportion, but no more than a foot and a half long. The bones in her back and arms and legs are fused. She has no joints. The nurse has dressed her in doll’s clothes.

In the next crib is a child with the strangest arms and legs I’ve ever seen. They wave in the air, long and thin, boneless as Bugs Bunny.

Next to her is a dark-haired boy with a head the size of a Mickey Mouse balloon and a body no more than twenty-four inches. His eyes are beautiful, with black lashes showing up against the stretched cheek bones of his encephalitic head. The cheek bones have splayed his teeth out over his lower lip. All that’s there are his eyes, those beautiful eyes.

“How old is he?”

“Fourteen.”

“How long will he live?”

“Forty, maybe. With antibiotics.”

“Why not let him go?”

“Life is strong, it doesn’t lie down and die just ‘cause you want it to.” The doctor’s long, lined farmer face looks resigned. Both to the fate of the boy and his own limited fate as a small town doctor in a forgotten New England mill town, left to care for the severely damaged. Then seeing that I can’t accept his answer, he adds, “We keep him alive not for him, but for us. Hitler decided to do away with the retarded and look where that took us.”

We walk down the stairs, he stops. “Before you go, I’d like you to meet my son.” In a nearby recreational room a boy is operating a hand loom with the help of an attendant.

“Hi-yah Johnny, how’s a professah?” The doctor gives his boy an affectionate cuff, Johnny grabs his father’s hand and kisses it. “Johnny’s learning to work the handloom.”

“And he’s learning to read, too,” the attendant says. Johnny nods, gurgles, holds up his book, and reads out a jumble of words.

Another affectionate pat and Dr. MacIver and I walk out into the autumn sunshine, past the children raking leaves. The doctor greets each child by name and I’m grateful for his close-mouthed Yankee goodness.

“Be fruitful and multiply,” God whispers in our ear, and leaves us to deal with the mess. Something we call Mother Nature. All those DNA strands laid out so intelligently, then Mother Nature picks up her hasty knitting. Stitches dropped all over the place, one sleeve longer than the other—why have I taken on this hideous assignment?

That night when I get home I take a glass of gin into the shower with me and stand in the hot steam drinking it, hoping the gin and shower will wash me clean of the sights, the sounds, the smell, the pain, the loneliness, the boredom, the repulsion, the horror—and my own shame. I’m ashamed that I don’t care for these weird, achingly human creatures. But I’m the one who’s sought them out, I’ve incorporated them into myself and now—gurgling, tugging, and strangely dignified—they won’t leave.

However intelligent I think I am, however charitable and reverent of life, lodged deep in my mindless dreams is a clammy anxiety over these poor beings. Fearing the very sight of them may cause some horrid contamination, I, too, want them shipped off. Out of sight.

No movie achieves this anxiety better than the thirties movie of
Frankenstein
, with its dark “German expressionism” shadows. In the movie the faithful, dimwitted Fritz is instructed to steal a brain from the Goldstadt Medical College. Through the window he watches Doctor Waldman hold forth on two brains, one a perfect and upright specimen, the other, ugh—

“Note,” says Dr. Waldman, pointing to the abhorrent brain, tracing its whorls with his pencil, “the scarcity of convolutions on the frontal lobe, the distinct degeneration of the middle frontal lobe. These check amazingly with the history of the dead man before us whose life was one of brutality, violence and murder.”

Dr. Waldman departs, the class files out, the laboratory lights turn ominously low.

Fritz enters by stealth, grabs up the jar marked “normal” only to drop it. Oh my, what to do? The perfect and upright brain lies shattered in a pool of formaldehyde. Fearful lest he displease Dr. Frankenstein, desperate for anything brain-like, though clearly he’s been warned, he seizes the jar marked “dysfunctio cerebri,” (also marked “abnormal brain” in case we can’t read Latin) and the rest is movie history.

The movie make-up and monster costume give Boris Karloff the look of a huge and powerful hydrocephalic. A look Karloff reinforces with voice, clumsiness, and the slow, vaguely threatening response of limited comprehension.

Is the monster—he’s called “the monster”—friendly? Yes, but I don’t want his friendship. Will that make him angry? What will happen then? Fits of physical rage are not unknown in institutions for the retarded and those deemed mad. Strong male attendants are employed to keep a hand on things. Monstrous strength can be triggered by a seizure, or a new excitement. Am I the new excitement? All suitable human feelings vanish. I don’t want him to grunt his story at me! I don’t want to learn that he has the same hunger for friends that I have—the same need to hug and be hugged, that he’s really gentle at heart, that all he wants is to be listened to—

No! Every cell in me wants to run. But then, every cell in me wants to look. The creature is my shame-choked haunting.

Finally the gin does its work.

Spring, 1961. The WGBH documentary on retardation, titled
The Innocents
, an old-fashioned term for the retarded, is given a private pre-airing screening before its public release.

Since it covers shots of St. Colletta’s, a convent school for retarded children endowed by the Kennedy family in memory of the oldest Kennedy son, Joe Kennedy Jr., Ted Kennedy, the youngest son, attends the screening. He is surprisingly shy and solemn, taking his family duties seriously.