Tess's Hero

You hear a lot these days about prejudice. Bias. It's in all the papers. And some of what you see is about people with disabilities. Are we being fair to them? Did someone spout off and say something insensitive in a parking lot to somebody's kid with disabilities? What are we supposed to do as parents when that happens? 

Recently, somebody said something about Tess. It was unfair and prejudicial. About her disability. Shutting her down and setting limits on her. And it came from somewhere we least expected. But luckily, a hero stepped in.  

We meet jerks. It happens. Not everyone is cool. Not everyone thinks before they open their mouths. I get that. It's been going on for years. I've written about it before. Like about the family friend who told us, "Don't worry, eventually Tess will grow up and become a person." 

Just galactically insensitive remarks. 

Sometimes we get fired up. We overheard a dude passing us on a sidewalk last year making fun of someone, telling them they "belong on the short bus." My wife chased him down and gave him an earful. She said, "Our daughter has disabilities and in fact rides the short bus, and maybe you ought to think before you throw that around as an insult." 

The guy reacted poorly. He tried to tell her that his daughter also in fact rode the short bus, so it was okay for him to make fun of someone else using that as an insult. That didn't improve the situation. It got ugly. 

But that fire, that angry reaction we have comes from a concept, a saying that my wife invented. We've said it to each other and to other people dozens of times. This is the saying:  the only limits Tess has are the ones that we put on her.

Tess is now walking. She's learning to talk to us, using an iPad. She can ski. She can ride horses. She can swim. She dances. Feeds herself. Gives hugs and kisses. Has playdates. She can do tons of stuff. So the worst thing you can say isn't some offhand remark about a short bus or some ridiculous comment that suggests that Tess won't be a person until she grows up. The worst thing you can do is limit her.  

And there we are, a couple days ago. In the midst of a battle about screen, with our son Dana, age nine. Are you having this battle in your house? The wars over electronics? We eliminated screen time on weekdays, just so we wouldn't have to fight with him over getting him to put down the iPad, walk away from the TV and the remote. Hell, the other night, when I was trying to get him to read something, I took away his iPod, the iPad, the computer, and the TV, and know what he did? He went and found Simon. That electronic game from the 80s. For real.   

Tess was there too, while we were waging this battle. She started to get chirpy. Upset. We wanted to finish talking to Dana, so my wife turned on her phone and found an app that Tess likes, one that's designed for kids with vision issues. 

Dana went bananas. "Are you kidding me? I don't get the phone, but she does?"

And we told him that we can't treat him and Tess the same. Because they aren't the same. 

"You can do things," I said, "that Tess can't do." 

"Oh yeah?" he said. 

"Yeah," we told him. And we gave him an example:  having a sleepover with his best friend Alex. And another example:  living independently someday, out of our house. 

"What?" he said. 

"Tess won't move out of our house," I said. "She won't be able to." 

He got teary. He stared at us. We steeled ourselves for another round of electronics wars. 

But his voice got low. "How can you say that? You don't know. You have no idea."

And we realized. He was 100% right. We had done it. That thing that we hate, when other people do it. 

He lit into us. "Tess could have a sleepover. People used to say, she'll never walk. she'll never talk. You never know. You never know what she can do." 

We had limited her. And her brother was furious with us. He had us. He was so right. He came to her defense and shut us down. We apologized to him. We thanked him and told him he was right. We hadn't even realized how insensitive we'd been, as we were saying those things.  

We worry sometimes that we're making Dana grow up too soon. That we ask too much of him. That we don't let him be a kid enough. We want him to go out and see the world, travel, live where he wants, do what he wants. We don't want to screw him up. Make him resent Tess. Make him hate us

And it's times like this when we realize what a fine young man he already is. What an amazing brother. What a thoughtful guy, what an advocate for Tess. 

Such a great kid.