Celebrities. We need gas. We need groceries. Our kids want to go to the park. We push them on the swings. Sure there are some divas, but a lot of celebrities are pretty down to earth. And it’s the same for families with Down syndrome.
Celebrities. And Down syndrome. We’re just like you.
We’re in line at Starbucks. You see us. We see you see us. We see the stare that lasts a half second too long. You look away. But you’ll look again. You have to. You have to be sure of what you’re seeing. Something at once familiar and new.
Wait? Is that…?
Celebrities. And Down syndrome. It’s hard not to look.
Some of you want to talk. We have something in common and you will tell us what it is. The checker at Fred Meyer lights up to see my daughter. One look at her uncorks his memories of working with adults with disabilities. It was amazing. It changed his life. A transformation. All these years he’s never forgotten. He shakes his head, remembering.
But we only came for milk.
We didn’t tie our shoes this morning and say, okay family, let’s go out there and show them what a family with a disability is. We don’t wear badges, we’re not official representatives. We have school. We have work. We have seven errands on our to-do list and if we stop and Have An Experience with every person we encounter we’re not going to make the dry cleaners by five.
Celebrities. And Down syndrome. Sometimes we just want to walk down the street, like a regular family. Sometimes we want to blend in. But you can’t put the cork back in the bottle.
Celebrities. And Down syndrome. You think we remember you. From a concert, a train trip, the taqueria. From my daughter’s school. Four hundred children, of whom 300 and their parents greet her by name, while I look blankly at their child, hoping to return the greeting. I have no idea. I’m so sorry people. What are we calling you now? Regular people? Civilians? Typicals? I have to tell you a secret. All you non-disableds? You all look the same. I can’t tell one blonde-haired girl in leggings from another.
What’s the alternative? People could ignore us? Turn away in horror? We could go back to segregating people, locking us in categories—physical, social, economic. Adjectives for all. Adjectives that unlock some doors, double-bolt others.
This all sounds really ungrateful. Would it kill me to listen to some lady at the MAX stop talk about her niece while her dog sniffs my shoe – is that my re-payment for having a child who wasn’t whisked away at birth? This might sound selfish and entitled but being grateful that my daughter lives her life in full view of society feels a little like being grateful I was never sold as a child bride. Um, sure, but in Portland, Oregon, kind of removed.
Undoubtedly someday, too soon, I will miss people talking to us. Stopping me to tell me how adorable my daughter it. We hear it all the time. The person at Powell’s has no idea we just heard this in World Cup and before that in the Rose Room and before that on the streetcar.
What a luxury to complain about someone complimenting your child. First world problem? First and a half? And it will seem either a paradox or disingenuous when I say that I appreciate every comment. I know that doesn’t make sense. Parents of other kinds of children assuredly hear familiar comments that fit their child’s “category”–twins for example. Parents in general hear many of the same comments over and over. “Got your hands full,” is a popular one.
Given that children with disabilities were until embarrassingly recently hidden away, blotted from existence, being noticed in public perhaps has a special resonance. And I don’t blame the public. The public hasn’t had much practice. And the fact that so many people aren’t sure what to say and reach out anyway carries special weight.
So while this will seem hypocritical, I thank people from the bottom of my heart for trying to connect with us. Maybe they’re trying to make up for the past. Maybe they are acknowledging the recent injustice. Maybe they see the little social triumph that is my daughter, in her pink flowered flip-flops stirring her hot chocolate to cool it down. And if they want to offer a little thumbs up? What crank could have a problem with that?
Not to mention, my daughter, is pretty adorable. But she’s six. Heading toward seven. One day 10 and 11, the awkward years. She’s going to be an adult. People can’t call her adorable when she’s forty. She’s going to need to be noticed for her other characteristics. She is also kind, thoughtful, silly as a snail sandwich, and as I tell her multiple times a day, a hard worker, which is the understatement of all time.
Celebrities. And Down syndrome. It’s good to have a fallback, after the looks fade. One day the smiles will dry up, the comments, the conversations, the adorables. Just like they say you’ll eventually miss every aspect of parenting you currently struggle with, I will hate myself for complaining, for not realizing it could be so much worse.
What if my daughter grows up and no one notices her? What if someone gives her a hard time, makes a rude comment, and no one looks, no one sees. And I’m nowhere. No one who loves her is anywhere. And the smilers? Well, lady, you told us not to. You told us to leave her alone and let her live. We’re just treating her like we treat everyone else. We’re busy and we’re tired and we don’t have time to notice anyone. So welcome to the club.
Celebrities. And Down syndrome. It’s a tough game. You catch us in isolated moments. Sweet moments. Awkward moments. Unglamorous moments. Maybe you think the moment stands in for the whole story. But even we don’t know the whole story. We are stumbling, struggling, piecing it together, while the opinions, the trolls, come quick and furious, darts at a dartboard.
Celebrities. And Down syndrome. Images in the public’s eye. Skin deep. One-dimensional.
Take a look.
A deeper look.