The R-Word

I remember the day my daughter was first diagnosed as retarded. At the time, I felt this was worse than a death sentence. In the busy lobby of the teaching hospital, I struggled to keep my just turned six-year-old Peyton contained and amused for more than an hour during clinic rounds. Once in the examination room, the doctor, her hair in a neat bun and glasses perched on the tip of her nose, got right down to the business of neurology. Her chilly demeanor led me to suspect that she herself was not a parent. She spent a mere ten minutes with my daughter tapping her knees and twirling a tuning fork about her head as the resident took notes.

“Touch your nose,” she told silent Peyton. Peyton did not.

“But Peyton can point to body parts on her dolls,” I interjected hopefully.

“Is she fully potty-trained?” she asked.

“Not fully.”

She picked up a rubber ball, held it up for Peyton to notice, saying, “Catch.” Hitting Peyton in the chest, the ball bounced to the floor. The doctor continued her interrogation—Does she speak in sentences? Can she write her name? Tie her shoe-laces? Wash her hands? Play Simple Simon?—as the resident recorded all the negative answers. (It would be years before I realized that these questions had nothing to do with intelligence.)

As the deficits were diligently noted, I wondered what prevented her from asking about my daughter’s strengths. Out of the blue, I added, “Peyton loves dolls and books, and she can do puzzles up to twice her age level.”

The doctor did not respond. She had all the evidence to draw her conclusion, presented matter of factly declaring “probable intellectual function in the mild to moderately retarded range.” I picked up my daughter, who now wore a scarlet letter R on her pink Lord and Taylor dress, and carried her out the door, attempting to hide from her my frightened tears.

A child of the forties, yet not a baby boomer, I sought from early on to please, and to belong. I never questioned the traditional values my hardworking parents quietly instilled in me. Daily I played with the neighboring children of the red brick apartments in which we lived, their names now long forgotten. Except always smiling little Sarah. One day she simply vanished from our play, gone from her family still in Apt 2-B. I asked my mother where she had gone. She said “away.”

“When will she be back?” I pursued.

“She won’t be coming back,” my mother told me with a lingering hug. “Sarah is retarded. She has gone away to live in a better place for her.”

I was five. I didn’t voice any more questions. But inside I always wondered how “away” could be a better place than here in 2-B with her mother?

It is this “away” that I feared above all else for my daughter and for me.

Seventeen years after the first of many labels was attached to her like a name tag—after years wasted in segregated schools, after countless stares of pity, after suffering the abuses that so many voiceless children endure—Peyton was introduced to facilitated communication, a supported typing strategy that helps some individuals communicate. In her first session, she typed, “I AM INTLGENT.” Five years after that, she graduated valedictorian from Cuyamaca Community College in San Diego. And in the past five years, she and I (together with writer Carol Cujec) have written a book to tell her story with the goal of helping other children. She types with poetic urgency, “Understaters utter I’m no one. I’m broken, moldy bread, throwaway trash, great leper. Now I know I’m a voice of never-heard voices. Nothings need to be heard.”

This is the purpose of her book and this blog—to engage in open-hearted discussions on heartbreaking topics like devaluation, bullying, pity, and on healing topics like inclusion, friendship, and, most important, treating all people as valued members of our human family. Peyton said it best: “Treasure all because great is each.”