I’m sure lots of you have seen a recent meme circulating on facebook and the like of a quote by a Benedictine nun named Sister Joan Chittister. She says:
“But I do not believe that just because you’re opposed to abortion that that makes you pro-life. In fact, I think in many cases, your morality is deeply lacking. If all you want is a child born but not a child fed, not a child educated, not a child housed, and why would I think that you don’t? Because you don’t want any tax money to go there. That’s not pro-life. That’s pro-birth. We need a much broader conversation on what the morality of what pro-life is.”
The statement draws attentions to a bizarre contradiction that is inherent in much of the current conservative rhetoric around children, birth, healthcare, and other social systems…
To me, this quote draws attention to the fact that we also need to consider (or reconsider) what it means to be pro-choice and what the potential moral inconsistencies are that lurk within the politics of choice…just as Sister Joan suggests for the “pro-life” set.
Now, I should begin the discussion by saying that I am pro-choice, despite feeling that abortion is not a choice that I, personally, would likely make. But, having Ezzy in my life has caused me to reconsider the views that I have on abortion, especially in the context of prenatal genetic testing. Having a child that I believe was intended for me (whatever that might mean exactly), but who was identified prenatally as likely to have a genetic condition has opened my eyes to shocking rate at which genetic information is available in utero–and the corresponding lack of information about what, precisely, that information means.
Much in the way that Sister Joan draws attention to the missing concern in pro-life rhetoric for the life of a child beyond birth, I think it is essential to examine the “choice” within pro-choice. Choice implies options. Choice requires knowledge of those options. Having sat at the other side of a table from someone explaining to me the “options,” I know that I felt that my child being diagnosed with one of these conditions felt like the end of the world. I know that I felt like I had never really thought about what life as the parent of a special needs child would be like.
I also know that I was totally in love with the little life growing, moving, kicking inside me…and that there really was no “choice.” She was my baby…and the possibility that there was something “wrong” was not an option, and the nature of Esmé’s condition is such that it would have been impossible to prove it in utero anyway…since we can’t even prove it now!
But, stick with me here, this is an increasingly important discussion to engage as the nature of genetic testing is changing. It is very different to receive inconclusive information at 20 weeks gestation than to find out, conclusively, that your child has a genetic condition within a matter of a couple of weeks after a positive pregnancy test…the choice, in this case, is not about a moving kicking soon-to-be-baby but it is about an idea of a baby, still perhaps a prayer of a baby, not even safely out of the first trimester. But now it is possible to find out whether a 7-10 week embryo has Down Syndrome (Trisomy 21). This means that people will be making decisions about aborting these embryos based on their genetic status before they have connected with anything much “real” about that child. As a result, it is predicted that within several generations no more children with Down Syndrome will be born in this country.
I find this tremendously sad.
Now, the fact of the matter with children, special-needs or otherwise, is that they become increasingly precise–less possibility and more reality–with time. This starts at the prayer of the baby, through the kicking baby, through the just born baby, all the way through their life. Children increasingly become who they are rather than who you thought they might be. But despite the fact that there are things about them that aren’t perfect, you love them. You cannot imagine another child for yourself…but had you been told all their imperfections before their birth, they might sound like a whole lot of obstinate, mess-making, frustrating trouble, right?
Before having Ezzy, I could not imagine that I would be a good special needs mother…so much so that I put the idea out of my head. Now I can’t imagine parenting a typically-developing kid….so much so that I am a bit in awe of how other parents muddle through without feeding tubes and night nursing. Had I known what a tough road we were in for I would have been very afraid…and if that was all I knew about I never would have wanted to have a baby. But if I could have known it all–the fear and the love, the pain and the joy–I would dive in head first into parenting over and over again.
What I am trying to say, perhaps in a circuitous route, is that after experiencing life with Ezzy, I realize that when I was pregnant with her I was not informed enough to make a “choice,” even had they been able to find something to confirm their suspicion of her condition. And I certainly would not have been informed enough at 10 weeks, before knowing this child from the way she moved inside me.
There are so many special and wonderful delights about having a child like Ezzy. I get to snuggle with my almost-two-year-old as much as when she was tiny. I spend entire days with her sleeping off seizures in my arms…with nothing to do but admire her little lips, curly brown hair, and eyelashes. We celebrate the tiniest “inchstones” with great gusto. Her team of supporters is never shy about their admiration…no one worries about spoiling her. And, best of all, I spend every day with the most loving and heroic little heart I could ever imagine.
And I worry that there are a lot of expectant parents out there who would make fantastic parents to their special needs baby, who don’t know it…just as I didn’t know it…and who are making “choices” about their unborn children without all of the information about the very special delights that exist in a world with a child like Ez.
I am not saying that people who feel they can’t parent children with special needs should be forced into keeping children they feel they can’t care for. I think that all parents should be willing participants in parenting–I think this is what is best for children, especially those who require special attention. I am suggesting, however, that if you aren’t in it for the long-haul. If you feel you couldn’t stand by your child no matter what, perhaps being a parent at all isn’t the right thing for you. Because there are no guarantees, even with the current genetic testing.
I think that there needs to be better education for all people about children (and adults) with disabilities. This isn’t something that begins across the table from a doctor after an ultrasound. It is a life-long adventure of integrating, exploring, and celebrating difference in our schools, our work places, and our communities. There are some beautiful examples in a campaign for raising awareness about Down Syndrome at IDSC for Life. I am not certain I believe in all their politics, but their photo campaign of children with Down Syndrome with quotes like, “Prenatal testing cannot predict this kind of love.”is beautiful.
Most importantly, I am saying that these things are not clearly black and white. I am saying that the picture is bigger than whether you believe in “choice” or “life”…you can believe in both.