When my daughter passed away last year our world was shattered.
A vibrant soul had left our home and our hearts were broken. They still are. These things don’t go away, but we learn to live around them and through them.
When we adopted both kids we tried really hard (and failed a lot, for the record perfection is a goal I’ll never achieve) to never let their limits define them. My daughter was visually impaired and we taught her how to drive a power wheelchair and she had an adapted bumper car. We set up the house for safety and blocked the stairs and I was always a step behind. She used her cane to figure out walls. Most people thought we were nuts. Sometimes I felt nuts watching her zip around like a speed demon. But guess what? She never got hurt. And she smashed another barrier. She rode a bike, she went fishing, she asked to do things and we adapted them so she could. I wanted her to have a rich and vibrant life. I documented these things because I wanted the world to see that a disability isn’t the kiss of death.
After she passed away we got a letter. My husband read it first and handed it to me. It left us both pretty stunned.
I’ll spare you the whole thing but I did want to share parts of it that left us speechless. And not in a good way.
“When we consider that caring for Cary has been…..your more-than-full-time
occupation for so many years”
“Thank you for sharing your home with Cary.”
The letter had a lot more, but frankly, it still makes me mad and it’s been over a year, so I’m going to address the more mild statements that you see.
I’m going to use a word that I try to save because I think it gets overused on a regular basis. But in this case, it fits.
Let’s talk about Ableism.
First of all, my child was not my “full-time occupation”. I actually have an occupation. We are all a family and therefore intertwined in each other’s hearts. Motherhood isn’t a job for me, it’s a privilege.
Second, sharing my home?? Was she supposed to live in a box somewhere? I think this was meant kindly, but this makes it seem like we took a dog home from the pound.
Look, I know people mean well. And I honestly think that the letter writer didn’t think about how this would sound. Like we were some sort of savior for this less-than-worthy disabled child. Disability doesn’t equal disaster. Nor does it mean inferiority.
And that’s why we need to continue to educate others. Why we need to talk about disability. Why we need to include disabled voices. Why disabled people need to share their stories and why we need to listen to them.
The best way to combat ableism in our lives is to ensure that there’s always a seat at the table for those who are like you and those who are not, and checking how we treat people with disabilities once they are at the table. As simple as this sounds combatting ableism is often as simple as just treating disabled people like you would anyone else.
By doing that, we show people that people like my daughter shouldn’t be pitied or treated less than. That they are fully capable of having a rich and amazing life and adding diversity to the world around them.