I appreciate the PSA for World Down Syndrome Day starring Olivia Wilde, but I also think it got one big thing wrong.
Today is World Down Syndrome Day—and it's a great time to celebrate the accomplishments of people like Madeline Stuart, the Australian model with Down Syndrome who's doing much to promote acceptance and inclusion of people with disabilities in the fashion industry. It's also a good time to draw attention to community organizations like Gigi's Playhouse, a place where kids, young adults, and adults with DS can hang out, learn, and play in a positive atmosphere. I also think it's a great time to listen to both what parents raising kids with Down Syndrome have to say, and to hear from people with DS themselves, because too often people with disabilities are left out of the conversations about themselves (I see this all the time in the autistic community, which is one reason why a rallying cry there is "nothing for us without us...")
With that in mind, I'm deeply conflicted about a controversial ad that I keep seeing all over the Internet today. It's supposed to celebrate World Down Syndrome Day, and it features actress Olivia Wilde, with a voiceover by AnnaRose Rubright, a 19-year-old girl with Down Syndrome. The ad's message is a positive one overall—our narrator sees herself as beautiful, happy, and wanting a life that's "important, meaningful, and beautiful." She also notes that she's a "daughter, sister, best friend...a person you can rely on..." and at the end she poses the thoughtful question: How do you see me?
It's not until the end, however, that we finally see AnnaRose, instead of Olivia Wilde. For one quick second, we get a glimpse of who is speaking, but for me—mom to a wonderful, neurodivergent autistic son— it's not enough.
Now, I understand that this ad is supposed to challenge our perceptions of how we see people with disabilities. And I understand what the creators of the ad were trying to do—but by leaving AnnaRose out of most of her own story, we're defeating the purpose of the ad.
And, as one one writer points out, that's problematic on so many levels—and it might actually make kids with disabilities feel even less seen than before.
So, how could this have been better? Simple: It could have had AnnaRose starring in her own story.
That's what full inclusion looks like to me. And if you ask #HowDoYouSeeMe, I reply with: I see you as a full person, capable of telling your own story, and worthy of living a full life today and every day.
Jamie Pacton lives in the Pacific Northwest where she drinks loads of coffee, dreams of sailing, and enjoys each day with her husband and two sons. Find her at www.jamiepacton.com and Twitter @jamiepacton.