Sometimes I see people discussing how much you can learn from a person with Down syndrome. In fact, a reviewer noted that in the story Her Turn, the main character calls her brother with Down syndrome her “greatest teacher” over a dozen times.
This got me thinking. My sister, Katie, has Down syndrome and I’ve never referred to her as a teacher.
For one thing, I have had many great teachers. From elementary school to college, I’ve had the privilege to learn from many amazing teachers. (I’m thinking of you, Mrs. Levine, Mrs. Lacombe, Professor Moran, Professor Selgrad, Professor Hanson, and so many more of you.)
We Play Many Roles
I am her companion, her counselor, her bossy sister, her late-night confidante, and her friend. She is my companion, my household domestic assistant, my stubborn sister, my guardian angel, and my friend. She’s the one who stops me from making bad decisions. I’m the one who tells her how long to microwave her leftovers.
We teach each other. I guide her through complexities while she grounds me in the here and now. I teach her the nuances of adult living and she asks me if I remembered to eat lunch. Honestly, we need each other.
I don’t consider her my teacher, regardless of Down syndrome. Instead, I feel like calling her that would be one-dimensional. She’s so many things to me.
My Sister Isn’t Here for Me
I’m pretty sure that God didn’t decide to create an entire human being just so that my life could be happier.
She’s a normal person, after all. (Who says Down syndrome isn’t normal?) She attends high school and talks about her homework. She video chats with her friends and her boyfriend. At home, she sings, dances, tells stories about her dolls, and sighs dramatically when she realizes it’s time to get ready for bed.
The majority of her time isn’t spent with me. She’s learning, chatting, listening to music, and binge-watching TV.
Her story is about her. If her life were one of those TV shows she loves to stream so much, it wouldn’t be about me. I might be a major character, but her life is about her.
Disabled People Aren’t Just an Inspiration
Have you heard the term “inspiration porn?” It sounds vulgar, but that’s not what it’s about.
Inspiration porn happens when we reduce a disabled person to being just an inspiration. Their story gets exploited so other people can feel like they’re a good person for liking it. It’s like those “sweet” news stories about a teen with Down syndrome going to prom or those “motivating” posters of an amputee running.
People smile at it with the attitude of “wow, look at them, pretending to be real people!”
Disability activist Stella Young created the term “inspiration porn” because she wanted it to make people uncomfortable. At its core, inspiration porn turns disabled people’s lives into one-dimensional stories for someone else’s benefit.
Now, I’m not saying that learning from a disabled person means that you’re objectifying them. However, treating them like someone who’s just there to teach you is different. It treats them like their purpose is to serve you.
Who She Is
My sister isn’t a narrative device. She isn’t a prop to make me more interesting or teach me life lessons. She’s my sister.
I asked Katie if she could write a paragraph about who she is. Here’s what she said:
I am myself. Katie is my name. My parents chose my name and my parents liked it. I got excited when I got my name for the first time. (It’s just a feeling.) I am a senior and I was graduating. I like to be with my sister. Also, I like to do online school because it’s the only way to be safe at home. I have a lot of friends. I like to listen to music and I like to go out. Also, I like to hang out with my family. I like to sing.
She mentioned me, but she didn’t talk about teaching me anything.
Above all, Katie is her own complete self, with many moods and facets and dreams. Any life lessons or inspirational ideas are just happenstance. Her Down syndrome doesn’t make her a teacher, an angel, or any other one-dimensional role. She’s a regular person and a regular sister.
I want the rest of the world to see that too.