With fists, with words, with kindness
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If my daughter had been born to the Ashanti people in Ghana, she would have been abandoned at the riverbank.
If she had been born to the Ga in Ghana, she would have been welcomed as a deity.
In Benin she would have been identified as good luck. But in certain communities of Kenya and Zimbabwe, people would have viewed her as a family curse.
Instead, she lives in the United States, where she is seen as a person who is disabled. And because she is a disabled child who lives in Vermont in 2013, she is entitled to receive special services. At the age of two she is visited every week by five different therapists, who each come to our house to play with her.
One woman helps my daughter stack blocks and fit puzzle pieces onto a wood board. Another woman encourages my daughter to use her arms to push herself into a seated position and to pull herself to her feet. Another woman — they are all women — teaches my daughter to make vowel and consonant sounds and the hand signs for “more” and “all done.”
My daughter cannot speak, yet. She cannot walk, yet. She cannot stand on her own, yet. Neither can she spoon-feed herself nor drink from a cup. Yet, yet, yet. Her trajectory is unknown. Her life is all ifs. All guesses and question marks. To my husband I say, “When she learns to walk,” but it could very well be “if.”
“Some even walk and speak in short sentences,” says the description of children with my daughter’s syndrome — Wolf-Hirschhorn — as though such achievements are on par with another child’s acceptance to Yale.
“The goal is for her to walk,” her physical therapist said when they started working together. So twice a week the therapist arrives toting the stool on which my daughter practices sitting up straight and the walking toy that my daughter cannot use on her own.
The therapist places my daughter’s fingers on the handlebar of the toy. She wraps her hand around my daughter’s narrow rib cage, circling it halfway. If the therapist were to let go, my daughter would keel over. The therapist moves one of my daughter’s legs forward, and then she moves the other. She is teaching my daughter the sensation of taking steps.
My daughter’s contribution is to remain upright and try to keep her hands on the toy as it rolls along. She smiles, makes sniffing sounds because she finds them entertaining, stares at the light streaming through the window, makes mmm sounds because m is the only consonant she can verbalize, and takes her hands off the toy when she forgets what she’s been asked to do. “That’s your job,” the therapist says softly, returning my daughter’s hands to the handlebar.
Will she walk someday? She doesn’t look like a person who will ever hold herself upright, balance on two feet, and take one step and then another. She appears to be modeled after a willow tree. She is very skinny, wavering with the slightest breeze. At two she weighs not even fifteen pounds. She holds her hands out, fisted, like ornaments on flimsy branches.
But her therapists are patient. They come each week at the designated times, and they do with my daughter what she cannot do alone. Week after week they come. They came when she was six months and couldn’t roll over, and they came when she was twelve months and could roll over but couldn’t sit up, and they came when she was eighteen months and just learning to bend at the waist, lock her knees, twist her feet inward, and hold her body upright for seconds at a time.
A year ago, when my daughter lay on her back staring up at the ceiling instead of crawling around the furniture like other kids her age, I asked my husband, “Will she ever learn to sit?”
“She’ll sit,” my husband said, because he’s an optimist.
The therapists aren’t exactly optimists. They don’t carry perky, glass-half-full attitudes into my home each week. They carry stools in their unmanicured hands, and walking toys, and bags of light-up objects, and realism as they outline exactly what my daughter cannot yet do. Of course, they also bring smiles. But they do not bring a hot-air balloon of giddy hope. We are not flying high here; we are inching along the ground, quiet and steady. We are slowly building a road.
As a result of these visits my daughter now sits upright in the crib. Her little face is staring at the door as she waits for someone to come play with her. Yes — she can sit up all by herself now.
In the sixteenth century, theologians Martin Luther and John Calvin said people like my daughter were possessed by demons.
In the nineteenth century, social Darwinists would have considered my daughter “unfit” for the state programs she receives. Why preserve the imperfect? they’d ask.
In 1970 “U.S. schools educated only one in five children with disabilities,” says the Department of Education, “and many states had laws excluding certain students from school, including children who were deaf, blind, emotionally disturbed, or mentally retarded.” Did the schools believe the kids were unworthy? Did they think progress was impossible?
Thankfully it is 2013, which means it is after 1986, when the U.S. Congress passed a law guaranteeing my daughter her therapies.
Sometimes I think about the life my daughter would have had in an earlier decade. I recall descriptions of children with Down syndrome stuck in institutions, dying because they were deprived of touch. I imagine gray walls, graying sheets, gray goop for food. I imagine moans from children who cannot form words, because they have never been given any help in forming words.
Sometimes I think about a true story I once read, set in the U.S. in the seventies, about a woman who had just given birth to a son who seemed different, the kind of child who would have been abandoned on a riverbank by the Ashanti or viewed as a deity by the Ga. In other words, he was disabled. The doctor said to the new father, “Forget about this one. Take that pretty wife of yours home and try again.”
Although this country can be criticized for many things — our venomous TV pundits, our vapid celebrities, our politicians who cannot agree on policies, and our governors who slash the budgets of early-intervention programs so that kids with disabilities in certain states receive one-tenth of the weekly support that my daughter does here in Vermont — it is in this country that my daughter’s five therapists persist in their efforts, guiding her hands to hold a cup and stack a block and grip a walking toy.
They are not aiming to make her a deity. Neither are they abandoning her on the riverbank. They are honoring her humanity. And in their faithful knocks on the door each day, in their even-keeled voices, in their patient repetitions as they move one of her feet forward, then the next, I sense what they see: Micro-steps eventually add up to a single step. Millimeters become miles. People like my daughter eventually learn to walk.
Heather Kirn Lanier