Girl with light skin and Down syndrome stands in the ocean water. There is a mountain behind her, and clouds. She is looking at the camera, eyes half closed and smiling. She is wearing a bathing suit with a unicorn on the front. The photo is black and white with sepia tinges at the bottom

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This is about moxie saying, “I hate Down syndrome,” and my response (as her mother). You can listen to me read this through my podcast, “Unpacking Disability” on Spotify or iTunes, or click the player below.

Moxie looked at me, her big blue eyes were sad.

“I hate Down syndrome,” she said. I was confused, “what? Where is this coming from?” I asked. Her little brother Mack jumped in, explaining that a kid in their camp didn’t want to sit next to Moxie at lunch, saying that she “looked weird,” and that hurt her feelings.

I looked at her. 

In that moment, I remembered being 12 years old myself. I remembered a boy telling me that my face was covered in scars, I couldn’t hear without massive hearing aids, and I couldn’t see with coke bottle glasses, “what’s right with you, Meriah? NOTHING!” he said. I cried long after he ran off and felt all kinds of supposed truth in his words.

So now my daughter was saying she hated Down syndrome, saying it because of one boy. 

I said, “yeah. Disability can be hard. It has been hard for Mommy sometimes too. But it gives us what we like about ourselves too.” I took a deep breath, released it and turned to her, asking, “what do you like about yourself?” Moxie said, “I am pretty.” I said, “one of the reasons you are pretty is Down syndrome. If you didn’t have Down syndrome, you wouldn’t look the way you do. What else do you like about yourself?”

We went through her list. 

  • Flexible – thank you, Down syndrome!
  • Good dancer – thank you, Down syndrome!
  • People like me – thank you, Down syndrome!
  • Sporty – thank you, Down syndrome!

She was feeling fine about things at that point, so wrapped up by talking briefly about the fact that kids who hurt inside say hurtful things. They are saying what they know. Let’s remember what WE know: that Down syndrome is a part of who you are, and you wouldn’t be Moxie without it.

I didn’t say this to Moxie (she was gone) but I’m saying it to you: disability isn’t always easy. But it’s an intrinsic part of who we are, any of us with disabilities. I think we need to teach our kids to recognize that, know that about themselves, whatever their disability is. I think they need to know their disability really, well – and understand the positives that their disability brings them. Not the positives that they experience in the world despite their disability; I’m talking about the positives that come FROM their disability. Those positives will be part of the foundation of disability pride. 

Disability pride is what I believe is her greatest protection in her future. It’s what she’ll reach for when people say she’s not capable of something, what she’ll lean on when abusers look for the most vulnerable person to pick on. It’s what she’ll put forth when employers ask her what she can bring to the table. Like Laura Hershey said, “you get proud by practicing,”

This is it: practice ground. 

Girl with light skin and Down syndrome smiles with her arms wide open. She is standing in the ocean, with a unicorn swimsuit on. She is smiling broadly. Her swim goggle are on her forehead.
Joyful Moxie

Opinion Pieces

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10 Dumb Things the Hearing Say to the Deaf (Featuring Captain Picard)
"Special" is the New "Retard"
That Teacher Carrying a Wheelchair Using Student
What People First Language Is (& Why and When It’s WRONG)
Square Pegs in a Round Peg World: The Power of the Neurodiverse

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One Comment

  1. Sandra McElwee says:

    Perfect! My son has said it many times. But because of his Down syndrome it has also afforded him some amazing opportunities—like being on a tv show!

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