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If it ain't broke, don't fix it

My daughter can hear the doorbell ring on a good day. She can hear dogs barking and says something that sounds a lot like “bless you” when you sneeze. She sings “Wheels on the bus” without an intelligible word, but with a close enough approximation of the tune that any stranger on the street would recognize it.

She’s not profoundly deaf – medically speaking, she’s hard of hearing – but she’s capital-D Deaf.  Even at 3, I see her developing her identity as part a community of people who are proud of who they are and who don’t see themselves as “disabled.” This is a community with a not-so-distant history of being sent to institutional schools where they were forced to learn to read lips and punished for using sign language. Their pride – of course -emerged from oppression. As her mom, my hope is that she’ll develop this pride without experiencing the oppression.

When people learn I have a Deaf child, the first question is usually whether we plan to get her cochlear implants. We don’t – and for the record, she’s not a candidate for them anyway – but I bristle at the question because the meaning, however well-intended, is: can you fix the problem?

I don’t see a problem to fix. I see a resilient, whip-smart child who doesn’t miss a thing. A child who spent her first two years in foster care without language of any kind, but who, after 18 months in a new home, never stops talking and signing. She’s so skilled at gleaning meaning from context that my own mother-in-law, after spending the night with her granddaughter, asked if maybe she wasn’t Deaf, just language-delayed.

I don’t mean to brush past her very real need for accommodations and parental advocacy. She goes to a school for Deaf children. She has hearing aids that she won’t wear, but that still require new molds every other month. Her immediate family members are still learning her primary language.  She talks all day, but strangers understand maybe one in ten words. She’s starting speech therapy so that someday she can order her own ice cream without a pen and paper. Deaf education is historically terrible, and the community has high rates of illiteracy and unemployment.  And of course there are the asinine questions that we field for now, but she’ll eventually have to field for herself. Today’s version was: “Does she read Braille?”

We all have limitations that impact our choices and opportunities. I’m 5’5, and can promise you’ll never find me on the basketball court. But I don’t feel like I’m missing anything because I know what else is out there for me. So when people argue that she is missing one of her senses and how can you not want to fix that?, I think about what she has that more than makes up for her lack of hearing. She is part of a fiercely proud culture. She is a member of a community that shares her strengths and skills as well as her limitations. She’s got serious charisma. She enters a room and the party starts. When a classmate gets hurt, she’s the first one on the scene. She held her big brother in her arms for an hour the night before he started school. She’s an enormous goof.

It’s very hard for me to know that her limitations are the first thing many people see about her. So it’s my job to support her in any way I can to make sure that people will also see her as the whole, amazing person she is.

On Friday nights in my house, we light Shabbat candles and say a special blessing to each of our children: “Be who you are, and may you be blessed in all that you are.” As parents, could we wish for anything more for them?

#moreincommon

Marisa Howard-Karp is an adoptive parent to two special-needs kids and is an unemployed soon-to-be-graduate student. She gets really excited about things like adoption reform, disability advocacy, progressive politics, and cooking. Her superpowers include excessive worrying and overthinking, though her greatest talent is making everything more complicated than necessary. Marisa tweets @sheepseatingme and blogs at www.sheepseatingme.wordpress.com.

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One Comment
  1. KatjaMichelle
    November 23, 2011 | Reply

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