How should moms tell their children that they have a disability? Well, there seems to be a disagreement about that.
Over at the News page, I had shared on December 13, 2013, the post of how Kari Wagner-Peck broke the news to her son that he had Down syndrome. She explained his Down syndrome was like a superpower. Well, Cassy Fiano, another mom, took issue with that:
This is my son Wyatt. He’s 19 months old. He loves Mickey Mouse Clubhouse, the songs from Frozen, playing with his older brother, and being cuddled. He also has an extra chromosome. Wyatt has Down syndrome.
What he does not have, however, is a super power.
(Fiano links to a book describing Down syndrome as Super Powers, which this mom, too, takes issue with as “Inspiration Porn”.)
Wagner-Peck noted she told her son that he had a super power, because he really liked superheroes, and wanted to describe it in terms he already had an interest in. As she concluded her post:
My contention has been our son is not that different from “typically” developing peers. My husband and I do not see Down syndrome as a defining characteristic, but one of many our son embodies.
Does that mean our son has a super power? Maybe. Maybe we all do. This is what I do know about his having Down syndrome: it cannot just be about what he cannot do. Down syndrome is not objectively bad. For our family, Down syndrome is something to be respected.
And, Fiano’s conclusion is:
People with Down syndrome are complete people, and yes, they have struggles. But here’s the thing: everyone does. Every single person on this planet has challenges and hurdles to face, and they’re individual to each person. Yet no one goes around saying that someone with the typical number of chromosomes has a super power because man, he’s got a great smile.
Talking about people with Down syndrome this way…it just continues to set them apart. It continues to emphasize that they’re different from everyone else. It’s almost painting the picture of a person with Down syndrome as a puppy. They’re just so gosh-darn cute, and they make everyone so happy, and are so full of love! OK – now what are the real attributes they have? Because those are not the qualities that make up a complete person. And people with Down syndrome are complete people. They deserve to be treated that way, without condescending platitudes that just serve to further widen the divide between people with Down syndrome…and everyone else.
I think they arrived near the same common ground and goal: for people with Down syndrome to be accepted and respected as wholly, unique individuals, just like everyone else is.
Another mom thinks that part of her child’s understanding of who he is should include understanding that he has a disability:
If we believe our children should have pride in themselves, that they should respond to every aspect of their lives with grace, then we cannot separate them from their circumstances.
I don’t want him to say “take that!” to his diagnosis– I want him to thrive in it. I don’t want him to downplay– I want him to celebrate. I want him to say disability and hear dignity.
I want to look my child in the eye, loving every inch of potential and pain, saying, “You are my son. You are defined by your experiences and your reactions to them. You are defined by your mind and your body. You are defined by your kindness and your faith and your integrity. You are defined by your disability. And every piece of you is beauty.”
So, is describing to your young child who loves superheroes that his disability is a superpower a bad thing? Inspiration porn? A lessening of who he is? I agree that presenting Down syndrome to the public as a superpower risks setting individuals apart, when the goal of positively framing Down syndrome is so that those with the condition are respected and included as equals.
But what about telling a child that he has Down syndrome who loves superheroes, you frame it in a way that he can embrace it, not downplay, but celebrate it, so that he understands its part of who he is, and every piece of him is beauty? I think that’s perfectly fine, too.