How my native language and Down syndrome shifted my perspectives on privilege

Guest post by Jisun Lee
#Families#Philosophy#disability#identity#kids
Photo by Jisun.
Photo by Jisun.

Why do people tilt their heads when they are trying to examine something closely? Funny, huh? Seems like you’d want to look at something square on.

There’s a word in Korean “삐딱이”, or “bbiddaki” (I think I’m slaughtering the Romanization, my apologies, but this is what you get for reading the writing of someone who never had any formal Korean schooling). I’ve heard it translated as “rebel,” but my mom says it is closer to “sarcastic.” I think a very literal translation would be “one who stands crookedly.”

I recently came across a saying that uses this word: “삐딱이만 삐둘어진 세상을 제데로 볼수있다.” My very, very rough translation goes something like, “Only one who stands crooked can see the true crooked nature of the world.”

I’ve been chewing this over for a while, and I think my peeps are onto something…

When we started figuring out that my son had Down syndrome, the world really did tilt for us. Or, rather, we tilted. Hard. From his perspective, all he did was leave my belly, eat, sleep, poop, and try to do his thing. From our perspective? The entire world as we knew it changed in about three days’ time. Not that we aren’t always changing, but that one was an earth-shaking kind of big.

I sometimes try to remember who I even was before the diagnosis, and it is near impossible. I try, but that person is foreign to me now.

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I’ve mulled over that period in our lives (as I suspect I will continue to do for the rest of my life), and while I do remember a lot of anguish and crying, I also remember that after that first storm was a beautiful calm. I had a strange sense of peace that I could not explain. Each time I tried to explain that sense of peace, people kind of looked at me like I was close to a psychotic break, even though nothing was further from the truth. So I stopped trying to explain it, but it didn’t make it any less real.

I’d stood crooked.

Maybe not a rebel, because I never chose to have Down syndrome enter into our lives, but I did suddenly find myself off the beaten path. I found myself looking at the world really carefully, tilting my head. Crooked.

What did I see? A world that had created such a narrow passage to human worth, so narrow that most people couldn’t pass. A world where human beings were trampling over each other to get through that impossible passage. Creating hierarchies of beauty, intelligence, and ability that serve no one.

It isn’t the first time I’ve tilted my head at the world, and hopefully won’t be the last. I think at the heart of privilege, no matter what the basis, is that it is near impossible to see the distortions that cause inequity in the world. It is important though, whether by chance or through intent, to stand crookedly.

Maybe this means throwing privilege away. Maybe this means reacting to life’s “negative” experiences by leaning in, rather than running away. Maybe this simply means being open to life’s hurt rather than hardening my heart. Because, at the end, I might look back and realize that it wasn’t hurt to begin with at all. Just a chance to tilt my head, stand crooked, but see straight.

If you’re looking for more explorations of the intersection of family and disability, head over Offbeat Families’ archive of disability posts.

Guest Post By: Jisun Lee

Jisun Lee has two daughters, one baby boy, seven chickens, four fish, and one amazing husband. She loves knitting, mashed potatoes, flip flops, and a good debate. Jisun blogs at Kimchi Latkes about parenting, Down syndrome, and whatever else strikes her fancy.

Comments on How my native language and Down syndrome shifted my perspectives on privilege

  4. Thank you for this article, it was so beautiful, it made me tear up.

    I’ve been standing crooked since I was 10 years old when my little sister was born, with Down’s Syndrome. I know she made me a better person, more compassionate. I see people with special needs with warmth and love in my heart. Not everyone sees the world this way. Just from the way people stare (and sometimes don’t hide their disgust) when she misbehaves in public, I know that not everyone stands crooked. I wish they would. It’s a good view to have. He’s lucky to have an awesome mom like you.

    • MalPal, thank you so much for sharing your experience! I do hope that my other kids grow to say something similar about their relationship with their brother. And we all know, “misbehavior” is sometimes just code word for questioning the status quo. 😉

      ~Jisun @KimchiLatkes

  8. This article is wonderful, thank you for the glimpse into your culture. I’ve been standing crookedly ever since I was diagnosed with fibromyalgia(chronic pain&fatigue). It was kick in the guts as I was a stubborn-headed, say yes to everything, always going never stopping type of person. I’m still stubborn-headed as it keeps me moving and doing what I love, but I no longer say yes to everything – only the things that matter, like family and my art. Even then, it isn’t always yes. I also see the world through different eyes, often finding beauty in unexpected places because I’ve learned to slow down and enjoy what is around me. Joy is found daily with the little things. I’m thankful for that and my life is all the better for it. 🙂

  10. My older sister has a lot of special needs. I remember my mom once shared a very short story called “Welcome to Holland” (http://www.our-kids.org/archives/Holland.html). It’s not exactly the same, but reading your post made me think of it.

    Even as a sibling (rather than a parent) of a special needs child, there’s a great deal of frustration, but also a lot of love. For me personally it’s a balance. I agree completely that it alters your view of the world.

    • Thanks so much for sharing your experience with your sister. That Welcome to Holland story has been widely discussed in the Down syndrome community. 🙂

      Absolutely agree that all life is about balance, best wishes to you and your sister both!

  11. This is so gorgeously said: What did I see? A world that had created such a narrow passage to human worth, so narrow that most people couldn’t pass. A world where human beings were trampling over each other to get through that impossible passage. Creating hierarchies of beauty, intelligence, and ability that serve no one.

    The passage is so narrow that those who fit through in all respects (if anyone does at all) are in fact the exception, rather than the rule. Maybe we should all switch our thinking around.

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