Memoir: art and autism, lessons from my sister
I thought a creative collaboration with my sister would help draw her out of her autism. I didn’t expect it to change something in me
My sister, Nazia, was born in 1982, when our family, originally from Pakistan, was living in Saudi Arabia. She was a beautiful, healthy baby girl my parents doted over. By the time she was three, my parents noticed she wasn’t developing at the same rate as other children—not responding to sounds and not speaking. After consulting with specialists, they were told their little girl had autism. Thirty years ago, nobody talked about autism. Nobody knew what it was or what it meant for a child’s future. My parents were told that Nazia might never speak, never make eye contact or go to school or get a job. She would be dependent on them, and eventually on me, for her
I was seven at the time she was diagnosed and didn’t quite grasp what was happening, but after that, my role in our family changed. I went from being a big sister to a third parent, and we three parents have spent our lives trying to give Nazia the best possible life she could have, which included moving to Canada. Today, at age 29, not only does my sister speak and make eye contact, but she completed high school and is a partner in the Common Ground Co-op, an organization that provides employment for adults with developmental disabilities.
While Nazia has exceeded our hopes for her, she still struggles to communicate and connect with people. We ask her all the time what she’d like to do, where she’d like to travel, and how she’s feeling, but beyond her one-word answers, we can only guess at her emotions and desires. She once told me she was lonely, and it broke my heart.
My parents have done the natural thing in protecting her and providing for her, sheltering her in nearly every way. She doesn’t manage her own bank account, doesn’t pay bills. She behaves the way many adults do when they live at home: like a kid. But the sister in me wants—and expects—more for her.
Which is a big reason that, when I started a style blog last November, I asked Nazia to be my principal photographer. Every day I post pictures of my outfit, along with a short commentary about whatever’s on my mind. Nazia doesn’t care much about fashion, which she reminds me every time I ask her to try on a pretty outfit or change the hairstyle she’s had for at least a decade—a ponytail with a headband. “I just want to look like a normal person in regular clothes,” she says.
I’m convinced my sister’s an artistic person; she just hasn’t had a means of expressing it. She used to draw beautiful illustrations in grade school—sheet after sheet of bright, colourful, cartoonish images of herself and animals and the movie characters she loved—but only for herself and never to share. She has a gorgeous singing voice and was asked to join the choir in high school, but she refused, and my parents didn’t push her. I hoped that doing something creative would open Nazia up to new ways of
Our collaboration isn’t always easy. Like many people with autism, Nazia has a regimented routine that she is unwilling to break out of. If she’s planning to leave for her job at 1 p.m. and our photo shoot threatens that plan, she’ll become frustrated and retreat into herself. Leaving for work at 1:03 is out of the question. At times, she moans and groans, huffs and puffs, making her discontent about taking pictures painfully obvious. Regiment. Routine. Discipline. Not exactly the stuff of style blogs.
I keep hoping our joint project will unlock that secret space inside my sister’s brain that allows for meaningful connections
One day, I had a small window, about an hour, to take pictures before I had to leave for work. I asked Nazia if she could step onto the street, right outside our house, to take the photos. “After my show is finished,” she said. The show was an old Popeye cartoon on a VHS tape—one she’d watched at least 100 times before. I asked her to pause the tape; the pictures would only take a few minutes, I promised. But she refused.
I have a reliable core of friends and colleagues I lean on to snap a few shots from time to time, many of them talented photographers. They each bring their own style and personality to the photos, using interesting angles and playing with the apertures and the zooms and all sorts of things Nazia doesn’t understand. But they don’t give me what Nazia’s photos give me. The other photographers’ images are about them, whereas Nazia’s photos are about me. They’re uncomplicated and honest—just like her.
Maybe it’s the total absence of ego that allows her to take great pictures. Maybe it’s that she’s not trying to prove anything. Or maybe she just doesn’t care. When I ask her, “What are you trying to achieve with the pictures?” she says, “To make you happy,” or, “To give you what you want.” It’s sweet, but I want so much more than this. I want our project to be a rewarding experience for her. I want something to click in my sister’s head and in her heart that makes her want to communicate. When I ask her where she wants to take pictures, or how she’d like me to pose, I’m usually greeted with silence. Still, I keep pushing, hoping that our joint project will unlock a secret space inside Nazia’s brain that allows for expression and joy and, eventually, more meaningful connections with me and the other people in her life.
I recently had reason to believe that the plan was working—at least a little. Nazia finally stopped wearing her headband, and even voluntarily went shopping for some pretty summer clothes.
Meanwhile, something has unlocked in my brain. In the process of taking pictures, my relationship with my sister has shifted. It was unintentional, but for the first time in my life, I need Nazia’s help with something. I am regularly turning to her for her creativity and talent. I’ve become dependent on her, and it feels great.
Natasha Fatah is a writer and journalist in Toronto.
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