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Maxine

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Pixabay photo

By Daniel Dunaief

Daniel Dunaief

My Aunt Maxine had Down syndrome, which means she was mentally disabled.

In so many ways, Maxine and her life defied expectations and labels.

When Maxine was born, doctors told my grandparents that she wouldn’t likely live long, so they should consider putting her in an institution.

My grandparents couldn’t imagine being away from their daughter. They took Maxine home to the Upper East Side of Manhattan, where they raised and educated her.

As she grew up, Maxine was on the shorter side, at under five feet tall, and carried the youthful, round face of Down syndrome throughout her life.

She also had facial hair that my grandmother, mother and caregivers regularly trimmed.

My aunt lacked any self-consciousness about who she was, what she was, and how she related to the world. She figured everyone was as ready to love her and interact with her as she was with them.

More often than not, she smiled, offering an energetic and enthusiastic nod whenever anyone made eye contact. Plenty of people avoided looking at her in part because she was different and, in part, because she lived in New York and the rules of sidewalk engagement limited eye contact.

When people didn’t notice or engage with her, she kept walking, singing, talking to herself, chatting with her parents or the rest of us, or whistling, which she could do by inhaling and exhaling.

She lived at a higher decibel level. Her whisper was even louder than her normal speaking voice.

“What?” she’d whisper so loudly that it could be heard in the back row of a movie theater. “You want me to be quiet? Is that what you’re telling me?”

“Yes, shhhh.”

“Don’t shush me!” she’d say, her husky whisper, like her husky voice, becoming louder and indignant.

“Sorry, Macky,” I’d say. “People are trying to watch the movie. Can you watch it, too?”

“Oh, yes, yes, yes,” she’d say, nodding vigorously. “I’ll be quiet. I will. I’ll be quiet. If that’s what you want, I can be quiet. Sure, suuuuure!”

She was spectacularly funny and knew introductions were an opportunity for comedy.

“Who is this young lady?” she’d ask anyone who walked in the door in our house. The person could be anywhere from six to 96 and she’d ask the same thing.

“How old are you?” she’d ask.

No matter the answer, she’d suggest the person was a “lovely” young lady.

“What’s your name?” she’d ask.

When the person said her name, she’d say “what” several times and then ask the person to spell it. When she slowed our guest down repeatedly and asked her to say it again, the guest would shout.

“Hey, what are you yelling for? I can hear you. Not so loud. You’re hurting my ears.”

She’d squint and a smile would fill her face as she’d scan the room, knowing the old routine had hit the mark.

More than anything else, though, Maxine was compassionate, emotionally connected, loving and supportive.

She would sing the Star Spangled Banner when she listened to Robert Merrill on the radio before a Yankees game.

“It’s so beautiful,” she’d say, as she blew her nose and wiped her eyes.

I suspect many other Americans have an aunt, sibling, distant relative, friend or neighbor for whom labels mean even less than the totality of their lives, the winsome nature of their personality, and the triumphs that define their days.

Hearing anyone use the term “disabled” as a take down misses the point, particularly for those who seek to be the country’s leader.

Maxine required but also taught a level of patience. In exchange, our family and friends appreciated her joy of life and basked in her unconditioned positive regard. She wouldn’t have resented or hated others, wouldn’t have insulted individuals or a group and would have forgiven anyone who made a mistake.

Perhaps some day, those who use words like “mental disability” as a way to dismiss others or to cast others aside will think of the Maxines of the world. We can learn so much from others whose lives are different from ours and who aren’t trying to use words to project an image, to cut others down, or to suggest that someone is limited.

I can picture Maxine sitting in a chair next to me, tilting her head and looking at me from the side.

“You’re such a silly goose,” she’d laugh.

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Photo courtesy of Pixabay

By Leah S. Dunaief

Leah Dunaief

Thanksgiving Day would have been my sister’s 78th birthday. But my parents were told at her birth that she would not live long because she had Down syndrome, a genetic disorder. In fact, one of the physicians at the hospital commented, “Best to just throw her in the garbage.” My mother, who was deeply religious, advised the doctor that he was not God, told him in no uncertain terms where he could go, and together with my father, brought my sister Maxine to our loving and supportive home.

That was 1942, when no one ever saw a Down syndrome child, with the characteristic physical markings of a round face, almond-shaped and up-slanting eyes and short stature, on the streets of New York. As a result, she was the object of stares when we were in public. Fortunately, she was a happy and social child, and when she saw people staring, she would wave at them, smile and say, “Hello.” If they stopped, she would continue with, “How are you?” and even, “How old are you?” She would then advise them that they looked much older and thus make them laugh.

Even as late as 1960, the life expectancy of people with Down syndrome was considered to be 10. But by 2007, on average and according to the Centers for Disease Control and Prevention, persons born with Down would live to be about 47 years old. My sister made it to 65.

Why the dramatic difference within one lifetime? The easiest answer is the change in attitudes about children with Down syndrome. When Maxine was born, such children were routinely institutionalized, where they received notoriously poor treatment and lived in horrible conditions. Journalist and lawyer Geraldo Rivera, in 1972, exposed the neglect and abuse in Staten Island’s Willowbrook State School. It broke people’s hearts and was a change agent, and such facilities began to disappear.

Since the 1970s, a Down syndrome child is to be given a free and appropriate education like any other child in the United States by law. When my sister was six, my mother brought her to the neighborhood elementary school to register her for first grade. That was the first of many times she and Maxine were turned away. With great patience, my mother taught Maxine how to read “Dick, Jane and Baby,” to write her name and address between the lines, and to do arithmetic on a second-grade level. Ultimately Maxine attended a Catholic school in Brooklyn for children with special needs. My sister also had a natural gift for music, often spending many minutes playing familiar melodies by ear on the household piano.

I was reminded of all this by December’s Atlantic monthly magazine’s cover story, “The Last Children of Down Syndrome.” The article, by Sarah Zhang, focuses on prenatal genetic testing, the impact it’s having on the number of children born with special needs, and its effects on world-wide population as it becomes easier and more widespread. Her report is centered in Denmark, which in 2004 became one of the first countries to offer free genetic Down syndrome screening to every pregnant woman. She writes that since universal screening was offered, the number of parents who chose to continue a pregnancy after a Down diagnosis, in 2019 for example, was seven. What does the universal introduction of choice indicate about the future of humanity as genetic testing gets more sophisticated? she asks.

What is the value of a human life? The article poses the question, as well as dealing with the terrible pressures of choice. My mother was 36 when she gave birth to my sister. Age 35 and older is considered higher risk for the birthing of a Down syndrome child. There wasn’t the choice of amniocentesis then, certainly not other genetic testing, but had there been, I know how my parents would have reacted. They would have carried on in the same way.

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