(BIG OLD ASTERISK RIGHT HERE AT THE BEGINNING: My proximity to disability is almost negligible. I parent a child with disabilities. I do not have any disabilities myself. I only know what I can observe and what happens to me within earshot of The Baby. My hope in sharing these stories is not that you would feel bad for me, or even my son, but that you would be motivated to learn about ableism and how to combat it within yourself and your community. I also want to acknowledge that disabled people are far better positioned to talk about ableism (and what to do about it). Please, please, follow these people, read these books, etc and learn about ableism from people who experience it firsthand:

• Amy Kenny, author of “My Body is Not a Prayer Request: Disability Justice in the Church”
• Keep Wheeling Forward, TikTok comedienne
• Marlee Brooks- Chronic Pain Overcomer blog– Living a life with Ehlers Danlos Syndrome
• Cargo Shorts Dad– TikTok dad and daughter who teach about deafness
• Andrew Pulrang- Disabled blogger who talks about his life. He has an excellent blog on ableism here.
• #CriptheVote hastag on twitter has a bunch of interesting things about how ableism and politics intersect

Below are my thoughts as a non-disabled parent of a disabled child. I hope you’ll also follow the people above because they’re living it)

“Is he a dog?”

The Baby and I were at the library, trying to kill some of that summer deadspace time between nap and dinner. He walked in using his gait trainer, which always garners some stares because it kind of makes him look like a Transformer, and he was happily reading board books and putting his face uncomfortably close to the colored fish on the rug in the children’s section.

“What?” I said, looking up to see a bedraggled blonde girl of about 8 years old staring at us.

“Is he a dog?” she asked again.

I looked down at The Baby. He was wearing regular clothes and we’d added a muslin bandanna to catch some of his teething drool.

I looked back up at her. “Um, no. He’s a person.”

She crossed her arms. “Well, why is he drooling?”

“People drool,” I asserted.

“Well, I don’t drool. And I don’t know anybody that does,” she huffed at me.

“WELP, NOW YOU DO!” I barked at her as I gathered him up and stuck him back in his gait trainer to get away from her.

***

After school one day, The Baby and I rode the bike over to a playground after I picked him up from school. I have an electric bike and a kid’s trailer so it’s a pretty cool setup. We’re used to our local park, which is highly diverse and an inclusive playground. The playground we visited on this particular day is in a wealthy, mostly white neighborhood.

I bustled The Baby out of the trailer and placed him on some stairs so he could start climbing up.

All of the blue-eyed, blonde-haired children of the corn stopped and open-mouth gaped at him. I am usually able to diffuse the open mouth gaping by saying hello and that worked this time, although we had a few followers.

Finally, a little girl decided that she could go down the slide with him so we did some tandem sliding. Her caregiver (grandmother? babysitter? maybe mother?) came up and said hello. This woman was wearing a large wooden cross and she had that look that Christians get when they’re about to proselytize you.

“What’s going on with him?” she asked me sweetly.

The question confused me for a moment. He was crawling up the stairs to go down the slide again. Then, my heart sunk and I realized she was asking about his disabilities. I told her that he had Down Syndrome and some developmental delays.

She then said, and I quote, “Well, I believe that God doesn’t want that for him. Can I pray for him?”

I think that I probably write a good game more than I talk a good game in real life so it may surprise you that I did not respond in sassiness. I just didn’t have the emotional energy to fight this woman. I also didn’t want to leave the playground from awkwardness, as we’d just gotten there.

So I let her. I don’t even remember the prayer. I was just waiting for it to be over. Forget my own very complicated views on religion right now. We were just trying to play at the playground, for fucks sake. She prayed and smiled her proselytizing smile and walked away. I’m sure it was offered as a successful proselytizing in prayer group that week.

When I texted my friend about it, she pondered what the woman would have done had The Baby magically gained an extra chromosome during the prayer. Like, she says, “Amen” and The Baby looks up and says, “Mother, can we get some ice cream after this?” instead of lunging for the slide again.

The woman probably would have run away screaming.

***

I’ll be honest. I’m a little emotionally raw this week.

We got spoiled during school. The Baby was in a self-contained special education classroom for his Kindergarten year. There were only 5 other students and he was the only Kindergartener and, strangely, the only boy. He did go to ‘specials’ with a general education kindergarten classroom. In the fall, I led a Zoom meeting with the kids in that class to talk about The Baby and answer any questions they have. I showed them a short video on Down Syndrome. We acknowledged that he can’t walk or talk yet. The kids asked a few basic questions and then everyone wanted to tell me their birthday. The general education teacher was…magic and she showed her class how to include The Baby.

I enrolled him in some Vacation Bible Schools this summer because they’re cheap and they’re only a few hours long. I wanted him to get some peer-to-peer interaction. His nurse went with him. He just finished up a VBS this week.

Not one kid in his group talked to him. In five days.

What a disappointment.

I know that many kids just haven’t been exposed to disabled people, especially in our Era of Covid, but it was still a real letdown.

After picking him up, I sat in my car and sobbed. I was sad about the uphill battle we face in normalizing disabilities. I was sad that a church struggled with inclusion (although I probably shouldn’t have been). I was sad about the effort I expended to get him up there every day, only for him to be isolated from his peers.

But there is a silver lining…

We’d been invited to a birthday party for a girl in his general education class.

It was yesterday.

His classmates were so excited to see him. They said hello. They wanted him to go down the slide with them. They kept circling back to say hi and acknowledge him.

I captured this sweet little picture that will make you just want to die.

The kid in the picture really became The Baby’s biggest fan during the school year. At the birthday party, despite the gigantic padded play structure full of screaming children, The Baby was quite content to chill on the hardwoods in front of the grandparents. His bestie came over, sat next to him and told him how much he missed him.

I just…

It was just what I needed after a tough week. I got bestie’s dad’s phone number and now we’re making plans for a playdate. Bestie called last night and wanted to talk to The Baby so we put them on the phone (Bestie talked, Baby listened).

I am not naive. I know that this probably won’t get any easier, at least not for a long time, and as classmates grow up, they may lose interest, but for now, this birthday party buoyed our spirits after a tough week.

My little love is gonna be alright.