Updated: Jun 10, 2020
After our son Julian came home, my partner and I realized that there's this weird thing that happens when your child has a visible disability.
Scene: My partner and I are out in public with our children, eating brunch or sitting in the park or fucking existing in our lives. From across the way we become aware of a random person (so far it's always a white person lol) who is looking at us extra hard, with an odd smile on their face. It's the kind of smile you get when you're watching a Sarah McLachlan commercial about sad rescue dogs.
Rando, gesturing to our son: What's wrong with him?
Me, appalled: What do you mean by that?
Rando, smiling understandingly like a nurse in a psych ward: You know, what kind of special needs does he have?
Me, eager to end this interaction: He's a blind individual who has cerebral palsy.He's very unique and there's nothing wrong with him.
Rando, pityingly with tears in their eyes and their hand to their chest: POOR THING that is so sad. It takes a special person. If I had a kid like that I would just jump off of a bridge. I could NEVER EVER do that it takes a saint to parent a child like that. May I pray for him? *attempts to put dirty prejudiced hand on precious child's forehead*
Me, blocking the hand with a karate chop and stepping in front of my kid: You know, there's a lot wrong with what you just said...
Rando, in a SUPER LOUD voice as though addressing a congregation of fellow weirdos: OH JESUS OUR LORD HEAL THIS PATHETIC CHILD IN CHRIST'S NAME
Me to my partner: It's time to go.
Ableism, man. Prejudice against people because of their disabilities. It's a term I didn't even know when I started my career as a special education teacher. It's integrated into every part of our society, from the steep steps at the entrances of multiple businesses to the way our public education system works to the way that some of my kids' DOCTORS treat them. As though we are "special people, special parents, for loving our kids who are disabled. As though doing the bare minimum deserves a medal.
There are even other parents who act this way. I'm talking about the cure mentality parents, the ones eager to explain to you at the park how THEIR child with CP/autism/whatever is "almost normal" because of ABA therapy/shock treatments/stem cell therapy etc. They look at us with crazy eyes while they talk about how they've spent thousands on xyz therapy, which their child is in 1 million hours a day.
The thing is, we're not sad that some of our kids are disabled. We do want them to learn and grow as people, and to thrive, but we don't want to change them or fix them. We're excited and honored to be on this road with them.
I am so grateful that through my job, I've been able to get to know young adults with disabilities, and their families. The overwhelming majority of the families I've worked with are the good eggs. The kind of parents who are PROUD to be their kid's person, and eager for me to learn about their unique child. The kind of parents who clearly ENJOY going the extra mile(s) to help their kid thrive, rather than seeing it as a cross they bear. Many of these parents don't have tons of extra money or unlimited resources, but man they make the most of what they've got. Those parents are my touchstone as a mother.
And my students? Spending my days with them showed me that disabled people are people first, resilient and unique and so much more than the sum of their challenges.
We are so grateful for our people who "get it". I just wish more of society did.
On adoptive mother of a student looked down lovingly at her son and said it perfectly: "We didn't know he would be this way when we got him, but we wouldn't change it, would we dude?"
No, we wouldn't. We wouldn't change it for the world.