Emma not only gave me permission to write about this, but asked that I “put it on the blog.” I posted a small portion of this conversation on Emma’s Hope Book Facebook Page yesterday.
Trigger warning: eugenics, abortion
Yesterday morning I saw an article in National Geographic about the Seine and Paris that I thought Emma might enjoy reading, particularly since her grandfather, my father, was born and raised in Paris. But as with any topic I choose I asked Emma if it was something she was interested in.
Ever the diplomat, Emma wrote, “I do want to talk about the Seine, just not now.”
“Okay,” I said, “what would you like to talk about instead?”
“I want to have the conversation about eugenics,” Emma wrote.
I was astonished. After I’d recovered from my astonishment I thought of how I continually talk about presuming competence and yet am so often surprised by my daughter’s words. I’ve come to the conclusion that one does not preclude the other. I can presume competence and still be surprised by the things she knows and says. In fact, if I asked a group of twelve-year olds to talk to me about eugenics, I’m guessing there would be several who would not be familiar with the word, let alone able to spell it correctly.
“What specifically are you wanting to say or know?” I asked.
Emma wrote, “What do you believe is right?”
I said, “I don’t believe eugenics is ever a good idea, because it is a desire to extinguish those believed to be lesser beings. I think all human beings are valuable and should be treated with respect and equally.” As I spoke I held the keyboard for her to respond if she wanted to.
Emma wrote, “I believe human life is sacred and people treat those who they think are different far worse than people who are like them.”
“Yes, I think you’re right,” I said. “Do you worry about eugenics?”
“Yes,” Emma wrote, “because parents seem so upset when they find out their kid is autistic. I worry that people like me will end up being aborted.”
Eugenics and abortion… Now two topics I was completely unprepared to talk about. So we discussed both. I talked to Emma about prenatal testing and how such a test has not been made yet. I explained that autism has not been found in one particular gene, but that researchers are finding whole clusters of genes suggesting that it will be very difficult to isolate one or even a group of genes that may or may not be related to autism. We discussed abortion and how and why it is a complicated topic. And we talked about the difference between abortion and eugenics and how the two can overlap, but that they are also not necessarily related.
As with any complex issue, this is where parenting can get tricky. I asked myself, how much information is too much? I do not want to be overly protective and try to shield either of my children from difficult topics, nor do I want to “feed” my children my opinions. Instead I want them to have enough information so they can form their own opinions, even if they develop opinions I do not agree with. I’d rather disagree and talk about that than have them believe something without thinking about it.
I told Emma that her concerns were one of the reasons I feel so compelled to continue writing and why I hope she will also continue to write so that “more people get to know someone like me.” We discussed how people’s perceptions about autism and how the things we see and are told, all that inaccurate information, can cause people to do things they would not do if they were given a more balanced and informed view.
Emma then wrote, “…I will write about this more so other parents open their hearts and learn…”
Now I realize I am bringing up difficult and complex topics. Topics many people have strong opinions about. I’m actually not interested in getting into an ideological argument about abortion and a woman’s right to choose, however I am interested in discussing the ramifications of the current and ongoing conversation regarding autism.
Eugenics was not a topic I would have ever thought to bring up with my daughter. Not only was it not something I’d thought to discuss, it is a word I did not assume she knew. But, just as when she wrote to Soma a few months back that she had seen the Grammy’s, unbeknownst to me, my daughter hears everything that is said around her. Emma wrote that she saw the Grammy’s while waiting in the airport. I hadn’t even noticed they were being shown because I don’t pay attention to the television screens when we are in an airport, so busy am I with getting through security and finding our gate.
I am so grateful Emma is able to write about these things so that we can discuss her concerns. How many people who are Autistic worry about being harmed or even killed because of their neurology? How many are able to voice their concerns? How many are worrying in silence?
Emma – April 2014
Emma's Hope Book 