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 regular 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 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.
10 thoughts on “Down Syndrome: She’s Not My Teacher”
i would say that BOTH YOU AND YOUR SISTER are Learning from EACH OTHER ..MOST People are very Snotty Nosed about ANY DISABILITY ..Mark
You’re right, Mark! We learn from each other.
Most of the people I’ve met in person have been kind when it comes to disability. I’m sorry to hear that hasn’t been true for you!
it is a Education for BOTH OF YOU unlike any thing else .People understand /Help ..BUT very big But .do NOT see the EVERY DAY EFFECTS ..Being her Sister YOU DO ..makes a lot lot DIFFERENCE .Mark
Yes. I see the good, the ordinary, and the bad. She sees the same from me. I’m probably one of the people who understands her the most. She understands me pretty well too.
This is a great piece. It is perhaps one of the best explanations of why treating people as inspirational (teachers, or any other of the platitudes used to describe people with disabilities) reduces them to a single dimension and makes our lives about them. Thanks for posting it. Lane
Thanks so much, Lane! I was worried it was a little too short, but I’m glad you liked it. It’s time for people to stop treating people with disabilities as one-dimensional.
Amazing and well-said. Inspiration porn is disgusting and no way to look at any person. You need your sister Katie and your sister Katie needs you, it’s as simple as that. Sister relationships are always like that and you educate each other
Thanks, Celeste! Yes, Katie and I have a reciprocal relationship, not some silly one-sided “inspirational” thing.
This is so well put. People with disabilities are people. And they don’t deserve to have their purpose in life diminished for how they “inspire” others. As an autistic person, I am happy to be able to share my story and spread acceptance, but my purpose in this world isn’t just to inspire neurotypicals to be better people.
Love this post!
Thank you! You are so right. Disabled people are human beings, not props meant to further someone else’s story. I’m glad you’re out there teaching people more about autism.