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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