Navigation Menu+

Not Hiding Down Syndrome

Posted on Aug 31, 2013 in Down Syndrome

IMG_6237

Every so often in conversation with people who know Whitney, someone will say something along the lines of “she hardly looks like she has Down syndrome,” or “you can’t really tell that much.” While I know that the heart behind these words is pure and sweet, and it’s meant as a compliment, I also find myself struggling with what’s said.

Let me first say that I realize that differences often make people uncomfortable, and with a fear of being politically incorrect many people stumble upon their words when trying to talk about Down syndrome.  Or worse, people choose not to engage because they don’t know what to say or how to say it “right.” I try to generously extend grace in conversation—it is still fresh in my memory when I was the one who had no idea how to talk about differences. I’m not easily offended. The heart of good intentions speaks through stumbling words, and a desire to know and understand those who are perceived to be different is far more significant than accidental wrong words. Still, I want to share this reflection—not to criticize things people say, but to cast light on a different perspective, perhaps.

The thing is, the distinctive DNA of Down syndrome permeates every cell of Whitney’s body, she will always be wearing her extra special chromosomal makeup.  It is unrealistic and not a hope of ours to hide Whitney’s genetics. And at this point, it doesn’t bother or embarrass me to be stopped by people in the grocery store who notice she has Down syndrome.

But what do my friends mean by “looking like she has Down syndrome?”  Before I had Whitney, I had limited exposure to Down syndrome —a boy a grade older than me in elementary school, media/TV, and random brief passings with strangers in the mall where I tried not to stare out of curiosity.  There are probably a lot of people out there like me who just never interacted much with anyone with Down syndrome.  The result is a lot of people relying on social stereotype or scientific descriptions to shape their understanding of people with Down syndrome.  This, plus a plethora of very poorly taken photos, fail to capture the essence and diversity of people with Down syndrome.

We all make stereotypes, and when we meet someone who doesn’t fit our stereotype, the most common response is to make an “exception” to the stereotype, what social psychologists call “subtyping“.  When people say Whitney doesn’t really look like she has Down syndrome, I think they are making her an exception; she doesn’t fit their idea of Down syndrome.  But it’s not Whitney who has changed (see her weekly photos here), I think it’s their understanding of Down syndrome.  Perhaps their stereotype expected her to have glasses, or a cropped haircut with straight bangs, or to act a certain way.  I’d be willing to bet that there are a lot of people who have Down syndrome who break stereotype.  What I hope is that as people get to know Whitney, as they engage her enough to see more than just the features that tell them she has Down syndrome, that her common human personality and expressions will be more prominent and remarkable.  And the same would be true about engaging others with Down syndrome.  May we all broaden our perception of Down syndrome by taking time to interact with the variety of people who are its definition.

Whitney does look less like she has Down syndrome to some, but she’s also more representative of Down syndrome than most people think.

 

The photo below is one I took that shows a very real, relaxed Whitney.  She’s just looking at the camera.  To me it’s an authentic portrayal of Whitney in a beautiful photo where her Down syndrome is apparent.

IMG_6249

7 Comments

  1. Great post Michelle– we’re learning alongside you as Whit grows up. Eager to see you guys in November!

  2. Thank you for this amazing post Michelle!!!

  3. I would bet it also has to do with people getting to know her and seeing her as Whitney rather than a girl with DS. It’s like seeing a friend as themselves rather than their race, you know? The physical-ness fades out as their character shines through.

  4. Beautiful post.. thanks for sharing..

  5. Ahh Michelle. As expected, this is well written and informative all at the same time, with your special ability to intelligently add compassion and understanding. I’m proud to know you.

  6. It’s funny… but when Julia was alive, I often made comments that I couldn’t “see” Julia’s Down syndrome very much. But it was just like you said in your post… what I “saw” in Julia was her sweet eyes, her beautiful face, and my love for her… I just saw JULIA. When we know and love someone we see THEM, which really means we see their inner self, not their outward appearance. We start looking at them the way God does…”Man looks at the outward appearance, but the Lord looks at the heart.” I am glad to watch Whitney grow. She is truly beautiful. And it allows me to experience Julia a bit through her. I just can’t wait to see Julia again someday.

    • Everyone, thanks so much for your encouragement and for sharing your thoughts…Valerie, I love your memories of Julia. I’ve been photographing the Dahlias as they come up and think of your family each time. Kate, I think you’re right on and I’ve thought about how Down syndrome is similar to race. I’m so used to be a part of the majority, it’s quite a different experience being so closely linked with someone “different”. I’m very curious how Dylan’s experience will be. They are both oblivious to “differences” right now, this is our normal – I think his innocent blindness to DS/disability/differences is a truly special gift he gets for being Whitney’s brother.

Submit a Comment

Your email address will not be published. Required fields are marked *

twenty + four =

%d bloggers like this: