I know you are out there. And don’t fear: you’re not alone. I see the looks you give my parents as they let one of my sister’s “rude” comments slide. I see the way you purse your lips when my slightly overweight sister orders the cheese fries instead of the salad with dressing on the side. I can sense the internal swell of pride you feel as you pity us for our ignorance because, surely, if you were her parent, Kate* would wipe that scowl off her face. If you were her parent, surely those inappropriate comments would have stopped long ago. If you were her parent, surely today Kate would be a beacon of health and kale-fed wellness.
It’s hard for me to find the courage to tell you these things, since you’ve been such a constant presence in my life. You were there on our family trips to the zoo, as my parents were forced to use a leash and harness for my sister’s safety. You were there on our trips to the toy store many years ago, silently cocking your eyebrows as my sister screamed and pounded the floor while my mother helplessly watched from the sidelines.
But there were also times you weren’t there.
You weren’t there when my mother, a retired special-education teacher, learned my sister has autism.
You weren’t there before Kate discovered French fries, when the doctors almost had to put a feeding tube in because she would throw up everything we tried to feed her.
You weren’t there when, for the first five years of her life, my parents faithfully brought Kate to American Sign Language classes because they were told she would never learn to speak; and you weren’t there when she defied the odds.
You weren’t there on the cramped middle school bus, when every single person put their hand on the empty seat next to them and told my sister that no, she couldn’t sit with them. You weren’t there when my sister realized she didn’t have friends.
I realize there is nothing I can do to make you leave. You probably don’t even realize who you are. But recently, it’s hit me that one day I will be the likely subject of your critical stares. I’ve always known one day, caring for my sister would be part of my job description. I will most likely be her caretaker. And honestly, I worry that I won’t do it well. Selfishly, I often worry about my future and how I will juggle a career, children and my sister’s needs.
But then I remember that, without Kate, I wouldn’t be the person I am today. She taught me to be patient, tolerant and understanding. For every minute of stress we’ve faced, there have been 10 of laughter and joy.
So, wherever you are, I ask that you sit back for a moment and ask yourself if, really, you would “handle things differently.” Yes, Kate, like all of us, has her flaws, but, for all those moments you weren’t there, she was. The remarkable thing about human nature is that, despite overwhelming belief to the contrary, we have the power take what the universe dishes out, and we become stronger for it.
*Name changed for privacy
The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.