The Dangers of Labels

Pleasured I am pointed to hearing your understanding that lasted, large, limiting, linear labels are hulking jungles greeted by limitations. Keeping one limited is to measure there wastes of their great gifts.  One’s tears taste lime. Understares, terror builds. One washes their tears by return try freed to their Creator, as rest there they hunger. Polling my limits I kettled boiling red, as heard I’m trapped. There I wasted my lived times in pity.

Limiting labels murder poignancy of sweet journey. I watered my liking to keep open living by questing for others better lives poignantly sweetened by encouraging swiping labels away. Wastes caging pertinent persons must stop. A trepid heart needs verses assuring “I’m deared by this very looking world. I can be me. My heart need caw no longer.” There joy is heard. These awesome pertinent persons can be freed to limitless. It greeted I hurrah.

I spent much of Peyton’s first twenty years deliberating and comparing the severity of differences in persons labeled with disabilities that I met or read about. In the early years, this private, internal discussion between me, myself and I, offered some relief to my worries over Peyton’s delays and differences, as her challenges did not seem insurmountable if I therapied her enough. And professionals agreed.

In the days before Internet could bring me many children to compare her levels of functionings and measured progress to, I found I could usually comfort my fearful self with observations that the few children we met with disabilities seemed to have much greater challenges than hers.

A case in point was my own cousin’s (on my father’s side) son who was several years younger than Peyton. When talkative Wilson was three and not walking, he was tested. Duchene’s muscular dystrophy was diagnosed. Devastated and sad describes our entire family. Debilitating muscles until death in his early twenties was the best case scenario. Pity him I did. And compare I did. While Peyton would be continuing to improve, he would be suffering a slow and sure death.

Not so. Peyton lost functioning and filled with a suffocating sadness she could not begin to shake for well over a decade. Yet Wilson lived happy. At his celebration of life five years ago I reflected on my foolish attempts to comfort myself by comparing the severity of challenges, and how thankful I am for new understandings of acceptance and valuing Peyton for ALL she is. Above all, I am comforted knowing she can really feel my love finally.

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.”