Phoebe The Warrior

The most recent PSA for Down Syndrome Awareness day stars Olivia Wilde as a projected representation of a young woman who has Down Syndrome. The message that the video was aiming to send was: “Everyone wants to be seen as a person first, not a label.”

An admirable message for an admirable cause. Is it a little tone deaf though? 

Now, when I watched the video myself, I got a little teary eyed, as I always do when I watch videos of this nature. The message was received just fine for me initially, and I found it to be very touching. The thing is though, I am not a disabled person. I get to view this PSA through a purely objective lense as there is no part of me that is being represented.

People took to Twitter, commenting on the PSA such things as: Suggesting that people with Down Syndrome need to look like Olivia Wild is erasure and: Erasing identities never ends well. 

I do understand how the video is seen as problematic. It seems to set a standard for “normality” along with the implication that people with Down Syndrome don’t meet that standard.

What if it’s trying to challenge those of us who haven’t got Down Syndrome or haven’t had any experience with a person who does though? What if it is intentionally calling us out on how we do see a label first?

I remember quite a few years ago, Stephanie was watching High School Musical. She sat there transfixed, staring at Vanessa Hudgens with her mouth open. Eventually, without taking her eyes of the television, she said:

“Dweiful in she?” which is Stephanie for: “Beautiful isn’t she?”

I looked at my sister and noticed that she looked kind of sad. I said:

“Yes, but you’re beautiful too, aren’t you?”

“Mm.” was all she said.

When Stephanie is singing, dancing, putting her make up on like “big girls do” or just feeling confident, she does see herself as the Vanessa Hudgens’ and the Hillary Duffs and the Hannah Montanas in her DVD collection. She wants to look like them, emulate them and have people look at her the way she looks at them. Because she is a person.

Sometimes I think that I look like Brian Fallon. Sometimes I think that I look like Danny DeVito. Sometimes I look at people and wish that I was them. Sometimes I try to emulate those people myself. 

I think that the people who are taking to the internet and shouting “All Down Syndrome people are beautiful!” are problematic. It’s benevolent prejudice 101. Is a violent white supremacist beautiful if they have Down Syndrome…just because they have Down Syndrome? It is easy to want to jump in and say things like “People with Down Syndrome are all wonderful!” and your intentions are good…but that is actually stripping them of all individual identity and setting another standard for them to live up to. 

My sister is as beautiful as any other person. She can also be as big of an asshole as any other person. Sometimes she see’s herself as a person who set’s a standard for beauty and dances alongside Zac Efron. Sometimes she doesn’t like the way that she looks. She is a person. 

Would the video be more comfortable if the young girl’s projection of herself wasn’t an attractive woman? Would you prefer it if it was someone conventionally unattractive? 

It’s opened up a dialogue whatever your thoughts on it are and as always that is the most important thing. The campaign is #howdoyouseeme and at the very least, it has got plenty of people who do not have Down Syndrome telling other people who do not have Down Syndrome how we should be seeing people who do have Down Syndrome.  

A friend, another single mom by choice, texts me: a local brewery is promising Christmas carols and roasted chestnuts. I gird my loins and pack up the boys. I even slap on some mascara at a stoplight on the way. But it’s loud and crowded—maneuvering the double-stroller is nigh impossible. We last maybe half an hour before wending our way to the exit. The quiet of the back street is a relief.

As my friend and I are parting ways, a man with Down syndrome approaches us. He’s maybe 25 (I can’t really tell), and I’ve seen him in the area before. “Hello, ma’am,” he once said as I was running 400s outside my gym.

Now he sees Patrick first. “This is your beautiful mama,” he says. Then he spots Arlo. Not a second goes by before he says, “I was like you.” Not another second goes by before he turns and walks away. 

I want him to come back. I want to ask him about his life. Want him to fortune-tell what Arlo’s life will be like.

Instead I call, “Merry Christmas!” and watch him saunter up the street.

**********

My sister’s mother-in-law is taking my nieces and nephew to the new animated dinosaur movie. She tells me delightedly, “The protagonist’s name is Arlo!”

One of my BFFs texts me–her friend in Boston just had twins and named one of them Arlo! She adds a bunch of happy emojis.

I hate both these things. I understand I’m being irrational. I know you can’t trademark a kid’s name, and even if you could, mine is certainly not the first Arlo in history. 

But. 

I wanted my different boy to have a different name.

**********

Patrick talks a blue streak. Mostly nonsense: “Ack kuh batbuh beebeeeeee shih thoi thoi thoi wee dat da da. Daddee.” (Every time he says ‘dada’ or ‘daddee’, I correct him. “Donor,” I say.)

But in addition to the babble, he has words. Ball. Uh-oh. Truck. Tractor. Shoe. More. Crackers. Over Christmas, Nana read and reread B is for Bethlehem to him, and he’d point at Jesus in the manger and say, “Baby.”

We’re in a pile on the couch, both boys in my lap. Patrick pats my chest. “Mama,” he says. 

“Yes, I’m your mama,” I say.

He pats Arlo’s head. “Baby,” he says.

I pause. “Well. Yes. That’s Baby Arlo,” I say. Then I pat his own head. “And you’re baby Patrick.”

He pats Arlo again. “Baby,” he says, then flops over on his belly and slides down until his feet touch the floor, toddles off in his jeans and sneakers… Patrick’s not a baby anymore. Little Arlo blinks his big eyes at me. He definitely still is.

Patrick does it several more times over the next couple days. In the bath. On the floor. He pats Arlo and says, “Baby.”

He already sees the difference between them. He knows Arlo’s different, and I’m sad about it. Again it’s irrational, my simultaneous desire to have Arlo be different and not be different. 

“Brother,” I say. “Twin. That’s your twin brother.”

“Baby,” he says. 

**********

In that eternal two-week period when I was deciding whether or not to selectively reduce Twin A, I said to my sister, "I’ve always known the definition of ‘anguish’, but I don’t think I’d actually ever experienced it before.” I desperately wanted to abort. I didn’t want a child with Trisomy-21. I wanted a normal baby. I wanted two normal babies. 

But when I shared my anguish with my friend Kathleen, who had been a camp counselor for people with special needs, she told me, “Out of all the people I’ve worked with, people with Down syndrome are my favorite. Definitely.” 

And when I tearfully admitted my predicament to my friend Jess, a special education teacher, she tucked her chin, looked at me deeply, and said, “I love people with Down syndrome.” She said it again slowly: “I love people with Down syndrome.“

And she does. She loves Arlo. I love Arlo. Everybody loves Arlo. Because of, not despite, his differences.

He’s different. A different baby. A different baby, who is like the man outside the brewery. A different baby with maybe a not-so-different name. He’s going to be as different as he is, and not one ounce more or less. 

I have a normal toddler and a not-normal baby, and it’s all good because, as my mom predicted, I love them equally and in very different ways.

__________________________________