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Down syndrome: Petitioning Disney is not my priority

When I heard about a family petitioning Disney to include characters with disabilities, I initially cheered. As mom to a 4-year-old boy with Down syndrome, I’d love to see people with Down syndrome represented by the magic of Disney. But then my brain started churning, and I just couldn’t muster the urgency to jump on board.

I advocate for people with differences every day. I take deep, cleansing breaths and try to respond intelligently and politely when asked questions like, “So, how’s he doing? Why is his tongue sticking out? When will he talk? Will he always be in special ed?”

As I prepare to meet my child’s teachers soon to discuss inclusion, whether Charlie will know the alphabet by age 5 and how potty training is going, storming the Disney castle (per the latest petition) just isn’t on my list of priorities.

I’d rather ask whether Disney will employ people with different abilities. Does Disney work with families of a child with different abilities when they are visiting The Happiest and Most Expensive Place on Earth? Those feel much more important to me, if we’re going to talk Mickey.

And really, isn’t every Disney movie about someone with differences who’s learning to embrace those differences and be embraced by others?

Spoiler alerts: 

  • Frozen’s Elsa learned to corral her ice habit and realized being different didn’t have to make her an outcast. In fact, when she embraced her difference, she brought love and skating rinks to all her people.
  • The Fox and the Hound proved two very different souls can be friends — and never let anything stand between them, no matter their differences.

The list goes on. Disney is about entertainment, fantasy and a nice message in there somewhere, maybe (for example, don’t eat fruit from strangers; long hair can save your life; even if your dad dies when you’re young, you can still be successful — maybe even rule the kingdom).

I feel bad that I don’t love this petition. Let’s face it: The Down syndrome community’s dirty little secret is that we’re dysfunctional (like all families). I’ve complained about lack of collaboration and support, and here I am, questioning a family’s effort.

But what’s at the heart of our community’s dysfunction? The inability to disagree respectfully, have a dialogue and then move on. The truth is no one should agree to support something in the name of Down syndrome just because we’re part of the Ds community. Diversity of thought can lead to the most productive conversations.

So, kudos to a family inspired by Down Syndrome Awareness Month to call attention to an entertainment industry that doesn’t create characters with differences we see around us every day.

But for those who may feel as I do, that — although well-meaning — this effort could more effectively support more life-changing factors for our kids. Here are a few suggestions:

  • Help lobby Capitol Hill representatives to support the Achieving a Better Life Experience Act (ABLE Act), which would allow people with Down syndrome to save money for their future without losing disability benefits.
  • Push to pass the Keeping All Students Safe Act, which would limit restraint and seclusion practices in schools.
  • Educate school systems about effective inclusion practices. Heck, educate schools on the word “inclusion” and what it really means.
  • Donate to research foundations investigating the link between Down syndrome and Alzheimer’s.

My opinions, fears and aspirations for my son have evolved dramatically over the past four years. Maybe two years ago Disney would have been in my sights. Today, I just want my child to be a contributing and respected part of the real world.

More on parenting and Down syndrome

The link between Alzheimer’s disease and Down syndrome
How to talk to your child’s peers about Down syndrome
The truth about my child with Down syndrome

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