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When my sister was born, she was clearly unusual. Her appearance, her distinctive facial and physical features were a curious, unexplainable phenomenon. I remember thinking, “Where did this baby come from? Whose baby is this?”
My sister, as an infant, had dark, almost black, upturned eyes, a flat nose, a small mouth and large tongue. Her ears were curved inward. She had a single crease across both palms of her tiny hands, short stubby fingers, tiny feet with a larger than normal space between the big toes and the rest of them.
She was extraordinarily double-jointed – almost as if she had no bones at all.
I didn’t know that the features that gave my sister her unique appearance were the physical elements that made people with Down syndrome recognizable.
Lying in her crib, I often peered in at her; she, staring into space, her dark eyes, like the black buttons that closed my winter coat, fixed on the musical mobile dangling above her head. I don’t remember her ever crying or laughing or making any sound, really. She was always silent, lying on her back, occasionally moving her feet and hands.
For the first three years of her life, my sister couldn’t roll over, sit-up or stand; and she couldn’t talk. She shifted her position only minimally, often with help. Around three years, she started to roll over, sit up, maneuver herself onto all fours and sit in a chair without slumping into a bunch. She experienced some level of independence at around four years, scooting across the floor, propelling herself by thrusting her legs and feet forward and humping herself ever onward.
She grew and developed in her own way, along her own timeline.
“I hate it,” she told me one day as we prepared to go to her job at McDonald’s. She cleared and wiped down tables at McDonald’s and was overjoyed to do that. She was around twenty-two. “I hate it.” She looked down at her lap, seemingly talking to herself.
I reached to pull her seatbelt over her ever-expanding waistline. “Why?” I asked. “You like working there.”
“They make fron’ a me.”
“The kids; the kids; make fron’ a me.” Her eyes magnified behind her thick glasses, smudged and always in need of a good cleaning, searched for answers in my face that, even if I could explain, would never really ring true for her.
Even now, my sister survives on the belief that people are essentially good; and each time she experiences the recklessness of others, her expression is consistently a mix of deep sadness, regret and the hope that she will be forgiven for being so unusual – so much unlike others that the most she could ever expect is to be forgiven.
All people with Down syndrome have some degree of mental retardation or developmental delay. They are, however, far from being incapable of learning, especially to the degree that emotional expression, social expectation and the way in which others treat them as normal. They are very sensitive to being a part of the social group. I know I am well outside the boundaries of making a gross generalization, but it is my best judgment that people with Down syndrome are quite emotionally adept, genius at expressing affection toward others. Their intellectual capacity cannot be reliably predicted in infancy and early childhood, but their ability to express love and caring toward others is evident from a very early age. (I am well within my comfort zone making this generalization, and I invite my reader to take exception with it.)
My sister entered school at around the same age as other children, only she spent her days in a room where the window in the door was covered with construction paper. I never saw her at recess, and we never sat together at lunch. Knowing her as I did, I could only imagine that she was content among her friends and teachers, never questioning the good intentions of those who were responsible for her care and education.
My sister went from elementary, to junior and on to senior high school seated behind a window covered in construction paper.
When she was twenty, she graduated from high school; and for all her efforts, she was mailed a diploma and a copy of her yearbook. Inside were an empty oval where her picture should have been and a barren, blank square where her biography might have been printed, if anyone had taken the time to gather the information from her.
Of course, when she got the book in the mail, she leafed through it. She had no idea that her picture should be there, alongside the other members of her graduating class. She couldn’t even have imagined such an honor. She was content to look over the familiar faces she remembered from school – the lunch lady, pictures of the abandoned hallways, the quad.
My mother, much less content, contacted the school and demanded that my sister’s picture be duplicated and sent by mail to everyone who had purchased a yearbook. Not only should there be a picture, but my mother strongly suggested that my sister’s favorite color, her favorite song, her most commonly spoken phrase and her most cherished memory accompany the photo in exactly the same proportions as the oval and blank spaces that were provided to her on page 31 of her yearbook.
My sister was quite proud when she pointed out her own picture in the yearbook, after discovering it one day, glued perfectly within the spaces inside her yearbook – as if it had always been there, proof that she was like everyone else. She looked up at me, through those damnable glasses, kissed her hand and brought it down on top of her own picture. “S’me,” she said, “S’me.” She laughed, extending her long tongue as she drew in more air to feed her belly laugh.
My sister has never been like anyone else, really. She is my cherished and pure spirit, someone who is never truly unhappy for long or without a friend. Her life has been a hearty handshake, a warm and sincere hug and a promise for unconditional positive regard toward everyone she meets, no matter who they are or how they may have treated her in the past. I can never imagine comparing myself to my sister’s strength of character and her dedication to the idea that everyone possesses inherent goodness – if we just take the time to see it.
My sister’s medical and cognitive impairments have increased over the years; they unravel the mystery of her human condition more and more each day; but from the day she came home from the hospital, wrapped in a yellow, satin edged blanket, she was the most wonderful gift I could ever have imagined receiving.
My sister provides me with special education.
From the day she was assimilated into our family and our neighborhood, complete with her own unique personality, her own strengths and her own weaknesses, she has taken every opportunity to become the strong-willed, sensitive and tremendously good-humored woman she is today.
- A Special Thanks to the Special Olympics (lowhangingfruit.us)
- Development of Children with Down Syndrome (socyberty.com)
- Fragile X Syndrome and Receiving Social Security Disability (socialsecurityhome.com)
- Morocco: HRH Prince Moulay Rachid Presides in Rabat Over Inauguration of New Down’s Syndrome People Centre (moroccotomorrow.org)
- A father’s quest to make daughter’s dreams of fame come true (usatoday.com)
- Changes to Name, Definition of Mental Retardation Raise Concerns – On Special Education – Education Week (nataschasantos.com)
- People with Down Syndrome Can Be Jerks, Too [First Person] (jezebel.com)
- Sister of Mercy call upon politicians to pass Dream Act (wcnc.com)
- The Politics of Down Syndrome (readysteadybook.com)
- Music Video Made from Construction Paper (oceangrins.wordpress.com)