Cold Spaghetti

We enjoyed having Valerie, Eric, and baby Diego with us this past week. We especially enjoyed watching Will and Kate interact with a baby in their house: Will was watchful, gentle, sweet, and concerned (just as he had been with Kate) and Kate was curious and, as with everything else, followed Will’s lead. Here’s Eric reading an Elmo book to Kate (in the cowgirl hat) as baby Diego listens in:
Something unique about Diego is that he was born with one arm. His right arm did not fully develop in utero, leaving him with a very small hand on a small arm. As a family, they endured countless needless tests and exams, multiple doctors looking for other “problems” based on this one difference. I can only imagine how frustrating this must have been; it is stressful enough becoming a parent without having to advocate for your baby to be respected simply for who he is. Sometimes, it seems that children with differences are not seen past their differences. We all have personalities, characteristics, and physical differences that give us group diversity; I have a hard time with the tendency to put those with physical or cognitive differences that create challenges to ability in a completely other group.

Will was naturally curious about Diego’s arm and hand (he said it was “cute”) and Valerie brought up the well-fitted example of Finding Nemo, where Nemo had one fin that was smaller than the other. The example made sense to Will, who got that Diego was just like any other baby, and that was that.

But the whole thing got me thinking. Right now, Will shares his school with children who have cognitive and physical differences. Indeed, the Reggio approach prioritizes children with differences as an important and essential part of its programs. But how long will this last? As we consider schools for our kids, I realize that finding out about how a school handles differences in ability isn’t something I asked or even remembered to think about.

My junior high/high school had a special needs class completely separate from the rest of the school — in a hallway on a floor rarely used, out of the way from the main areas. We rarely saw these students; sometimes there would be a class session where one or two might be in the room. But there was no interaction. The whole set-up seemed to give lip service to the idea of inclusion, but really, was designed to have as little distraction as possible on the comings and goings of the general school. And that was really unfortunate.

What would have happened if inclusion was better prioritized in this environment? Would my fellow students and I have learned more patience and be better at friendship? Would we have gained skills in listening, empathy, and respect? I believe so; for these are the lessons we learn when we stop to consider the world from another’s point of view.

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A variety of excellent work has shown how the concept of “choice” has been warped by social standards and values. One of the side effects of choice (and I should note that I am, unabashedly and completely in support of reproductive choice in every situation) — is that women are judged for the choices they make regarding children. Choice of when to have a baby is closely tied to choice regarding what kind of baby to have. For example, every woman over the age of 35 is automatically referred a genetic counselor for invasive testing of her fetus. This is because the risk of genetic differences, Down’s Syndrome in particular, increase in women over the age of 35. While there may be good reason to know if your child will have a condition that may require special care and knowing beforehand may help preparation, the practice seems more connected to the question “is this child normal” than to “how can I prepare for whatever this child may be.” And what does genetic testing reveal? A list of percentages of risk related to a range of issues that may be present in the growing baby. You are presented a gamble, a numbers game that ultimately asks how much are you willing to risk that your child won’t be the 100% standard kid. If you take this gamble and do have a child that is different, you are stigmatized for this “choice” because you were warned. The thing about having a choice (and I have a hard time using that word within the issue of reproduction since, in truth, very few situations involve choice in the liberal sense) — is that when you are seen as having a choice, there is the possibility of not choosing the right one.

I did the triple screen with Will and when it came back abnormal, I was automatically referred to a genetic counselor for an appointment that included a consultation and amniocentesis “if, after the consultation, I decided to go ahead with it.” I canceled the appointment on the spot. I did this because I knew that I was going to love my baby, no matter what, and I didn’t want to deal with the frustrations and fears around the possibilities of problems. Having a baby is scary no matter what and regardless of who that child is, the parent will feel fear, uncertainty, and frustration. As it turned out, my dates were wrong and caused a false positive in the test (something that is exceedingly common with the triple screen.) With Kate, I declined this prenatal test and had to sign a variety of forms certifying that I didn’t want screening. In short, I had to resolve anyone of responsibility: if my baby was born “different,” I’d have no one to blame but myself.

I say all of this because I am troubled by the lack of respect we have for differences in each other and deeply bothered by the continued move to erasing differences in each new generation. While I try to teach my children to value diversity and appreciate others, I hope that they can find formative experiences in their schools to enhance these lessons.