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This Woman’s Beautiful Ode to Her Sister Will Change The Way You Think About People With Special Needs

Lauren McKeon shares an unbreakable bond with her special needs sister that defies stereotypes.

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Lauren McKeon and her little sister share an unbreakable bond. Illustration: Meredith Sadler

Kiddo & Me

I was not prepared for the possibility of my sister. She was born in that in-between time—the days before summer vacation has started and all the possibilities are still alive. I was jealous. It was 1992, and after seven years, 11 months and one day, I had unwillingly ceased to be an only child. On the way to the hospital, I vowed not to hold her. That sentiment stuck. Maybe I would’ve changed my mind if she were soft and sweet, like the babies I’d seen in movies. But instead she was a sound: squalling, with a tiny face wide at the mouth and bunched into wrinkles everywhere else. There’s a picture of me from that day, standing over her, my head topped with a floppy mullet, stomach jutting out. The puzzled look on my face says, Who are you?

Or rather: who are you to me?

It was a long time before anyone realized there was something different about her. She first had to grow old enough for us to see that she was still crawling while the other toddlers had learned to walk. By the age of three, she said few words, and they were rarely strung together. Our family doctor ordered tests. There were assessments, a word I didn’t quite understand. I didn’t know yet that you could define a person—that you could decide different like her meant broken. After the results were delivered, she became affixed with the label “developmentally handicapped.”

A diagnosis is meant to provide a reason. It can say, look, you have cancer. That’s why you’re feeling so unwell. You have this, so you are that. In this way, we neatly slot the world into order. A diagnosis of disability tells the world what a person can and cannot do, how they’ll be loved and how they’ll love in return. From the moment my sister was labelled, people expected it would define us, too. Her and me. When they spoke, they left so much room for the wrong words, such as “caretaker” and “burden” but too little for the right ones, such as “sister” and “friend.”

The word “retarded” is Latin in origin. Retardare means “to make slow, delay, keep back or hinder.” The first time it was used in reference to intellectual disability was in 1895. Not yet a pejorative, “mentally retarded” was considered a kinder term, meant to replace previous iterations—“idiot,” “moron” and “imbecile.” By the mid-1900s, people with disabilities were divided into three subclasses: educable, trainable and custodial. An educable person could be taught academic subjects, like reading and writing. Trainable meant a person could learn life skills, such as how to brush their teeth. Custodial meant a person required institutionalization.

Today’s historical accounts of disability scrub these terms clean with clinical politeness, saying things like, “A person who was custodial generally received very limited developmental opportunities.” Historians trust we won’t think of the word “custodial” and its split definitions: being responsible for the care of a child and a form of punishment that requires a criminal to spend time in a prison. They trust we won’t know.

I wonder if most people are blissfully oblivious. If that’s why I’m sometimes the only one in a room who hears the word “retard” and cringes, goes hot and cold inside, a flickering thermostat. If it’s because I’m the only one who’s held their kid sister, tears mapping down her face, while she asked about the meaning of the word those kids called her in the school hallways, on the street. Me, who couldn’t find a way to nod all those times she asked if it meant her.

I call my sister Kiddo. When I was in Grade 8, she started kindergarten at my school. The teacher worried about Kiddo’s diagnosis, was sure that she’d never count past 10. One day she locked Kiddo in the kindergarten washroom and forgot about her for an hour. When they finally went to retrieve her, Kiddo’s shirt was damp with salty sweat. At home, we never locked the bathroom door again.

The next year she joined a small, specialized class, and by the beginning of Grade 6, Kiddo had enrolled in an expensive private school for “special children.” She learned to count to 100, then higher still.

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Best SistersPhoto: Shutterstock

Best Sisters

During this time, she and I formed our big sister–little sister relationship, meaning that I thought I knew everything and was delighted when Kiddo sometimes agreed. In the summer, we settled into the milieu of 1990s suburbia: every day we walked our dog, a black Lab named Bruno, then played barefoot tag in circles, spent hours at the park behind our house, sang in a way that was more like shouting. We watched a lot of movies. Kiddo fast-forwarded to the parts she liked and skipped the rest.

One day, the VCR broke. We found dozens of Kiddo’s toys jammed into its gear-filled depths. Nobody saw her do it, and none of us could figure out how she managed to avoid getting her hand stuck inside. It didn’t matter: the VCR was done. When Kiddo, who by then favoured watching Teenage Mutant Ninja Turtles II: The Secret of the Ooze on repeat, found out, she mimicked Raphael’s most dramatic scene, yelling “Dammit!” at the top of her lungs. My parents were shocked, but I laughed and laughed and laughed.

In 1914, facilities that housed people with disabilities came together to form the Committee on Provision for the Feeble-Minded. The committee included satellites throughout the country, staffed with so-called intelligent men, all banded under one objective: to disseminate knowledge about the menace of feeble-mindedness and establish methods for its control. In New Jersey, one committee report summarized the “problem” of its “helpless, but dangerous class” as such: “They must be prevented from procreating, for their defects are known to be heritable and their numbers tend to multiply.” Like bunnies or mould.

The solution was to create work colonies in multiple states across the country. Clearing land for farming purposes, in the committee’s words, “does not appeal to the normal cit­izen, but for the feeble-minded boy-man, it is a joy.” A joy.

Grainy, colourless photos of the colonies show men in high pants and suspenders clearing roads, laying cement blocks and hoeing fields of sweet potatoes without pay. There’s a swimming hole that’s supposed to be idyllic, looking-glass water hemmed in by low trees, but to me it feels eerie. It all does. These places of mandated paradise were prisons.

When people ask me what “developmentally handicapped” means, I choose my words carefully. I’m a seamstress threading sequins on a bomb. I tell people that it means my sister’s developmental skills don’t always reflect her age, that she writes in block letters and reads, but not novels. More importantly, I try to tell them who she is through stories about growing up together, like the time she told her teacher, with confidence, that all she knew about Jesus was that he was dead and it was probably cancer that killed him.

Not much time has passed from those work camps to now. We think yes, but a lifetime of conversations tells me no.

Kiddo and I do this thing where we press our thumbs together and declare “best sisters.” It means that it’s us against the world. It means that I took the day off work to help her get ready for her prom. It means that when I moved to Yellowknife for a job in 2008, we talked on the phone almost every day for three years. It means I taught her how to make cookies and bagels and pancakes, and she taught me how to five-pin bowl and to not suck so much at Wii.

It means that once, she invited her high-school crush over when neither of them knew I was home, and that when he tried to pressure her into watching porn and doing things, I told him off. The next day at school, he said I was terrifying and that he would never again try to make her do something she didn’t want to. Kiddo and I discussed how those things are fun when you’re ready. When she was, we went on double dates and talked about nice guys and jerks and how sometimes you can’t tell who is who.

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Mutual CarersPhoto: Shutterstock

Mutual Carers

If I could, I would protect my sister from all the awful things in the world, not because she needs it, but because she’s the person I care about most. I can’t describe love; it’s just what happens when you press your thumbs together and say “best sisters,” and all the other moments in between.

The word “caregiver” started out as “caretaker”—a term that seems to accept the countless ways that caring can take from a person. I know it’s likely a nod to the idea of “taking care of,” but there’s something to be said for the way the word doesn’t hide.

“Caretaker” was first included in the Oxford English Dictionary in the mid-19th century as “one who takes care of a thing, place or person; one put in charge of anything.” For its part, the word “caregiver” waited a century before making its way into the vernacular, arriving in 1966 via the American book The Meaning of Mental Illness to Caregivers and Mental Health Agents. The definition: “a person, typically either a professional or a close relative, who looks after a child, elderly person, invalid, etc.”

“Caregiver” is now ceding to “carer.” I like that word. It gets us closer to the word “care,” the pared-down synonym for all of our closest and best relationships.

What people can never understand is that Kiddo takes care of me, too. When I say this, they expect stories of inspiration. I hear things like “She must have taught you to be a better person” or “She must show you how much you have to be grateful for each day.” These comments are meant to be kind, but they aren’t. They reduce her to a person who can only exist as a cosmic life lesson—they rob her of agency, of her purpose, and give those things to me.

These comments are just as bad as the ones I get when I tell people we spent the weekend together, like “It must be tough to take care of her” or “What do you even do together for all that time?” I’m tired of spelling out that we’re sisters, so that’s what we did: sister stuff.

Does this sound naive to you, this expectation that you’ll understand that my sister is my sister? If I know the person—and often I do—I’ll try to explain. I’ll tell them about how, when I broke my leg, she visited every other weekend with an armful of cheesy movies and climbed into bed next to me, laughing at how dopey I was on painkillers. That every time I’ve had to move apartments, she’s been there with a mop and packing tape. I’ll say that of course she was my maid of honour when I got married in 2011—even though so many people tried to dissuade me, that she walked down the aisle in a bad-ass suit covered in skulls, her hair four inches high in spikes. I’ll tell them how I called her three years later, sobbing, when my husband left me, and she gave me the sagest advice: “You know what, Lauren? A cat is better than a husband.”

I stayed with my sister recently, at my mom’s house, where she still lives, while my mom was out of town. It was an epic 10-day girls’ night. She made me dinner when I had to work late. Every few nights, we visi­ted Shoppers Drug Mart, spritzed ourselves with expensive perfume and pretended we were rich before walking a few aisles over and buying Skittles. At the end of it, she drew a picture of what our apartment might look like if we shared one. She gave me a large room, labelled “room,” and excellent hair, labelled “hair.”

There was a time when I thought my sister and I would move in together, that I would take custody of her. I couldn’t stand the thought of her moving into a group home after the horror stories I’d heard about exploitation, violence and abuse. I wanted her with me because she’s my best friend, but also because—let’s just cut through the shame and admit it—I was guilty of ableist thinking, too. I assumed she needed me in a way that she doesn’t.

During our 10-day stint together, Kiddo told me she’d discovered the term “special needs.” I’d never heard her say it before. When I asked what she meant, she said that’s what she was, special needs. That some people have Down Syndrome and some have autism and some have other things. That her friends were special needs, too. Then she asked me what my disability was, and what my friends’ special needs were. When I was unsure of how to answer, reluctant to categorize myself as other than her, she told me it was okay, I probably had autism. Then she asked if I wanted to eat popcorn and watch a movie. She turned on The Sandlot and fast-forwarded to the good parts.

© 2016 by Lauren McKeon. From hazlitt.net

Originally Published in Reader's Digest Canada