For The Book Club: Thread of Grace
In my letter to Mary Doria Russell I wrote: The stand out scene in the book for me was between mother and doctor regarding Down Syndrome - never I have read a fictional account that was more accurate about parental love of their kids with DS. How did you come to write this ... why did you think it was important to be in the book? Mary answered with the following. Warning, when I copied this to paste here the formatting was lost. Any problems with the paragraph breaks are mine. Here's what Mary had to say:
I suppose you're expecting that maybe I have some direct personal connection with DS, but I'm afraid it's not that straightforward. See, I'm a biological anthropologist by training (Ph.D., University of Michigan), and even before writing A Thread of Grace, I was conscious of 19th century anthropology's role in spawning the eugenics movement. The logic of eugenics is easy to follow:
natural selection used to remove unfit individuals from the gene pool;
civilization and medicine short-circuits that natural process;
and sounfit individuals survive and reproduce;
and thereforeunfit individuals begin to make up a larger percentage of the gene pool. Obviously, the key word in that is "unfit." Now add 19th century social Darwinism, which proclaimed that white Anglo-Saxon males -- born in Britain, America or northern Europe -- were the pinnacle of human evolution. What you get is a toxic blend of self-satisfied beliefs about cultural entitlement and biological superiority, backed up by political power held only by WASP men who didn't let anybody else participate in politics. Anthropology was their science and it was used to promote and stabilize their grip on power and to justify taking over other people's continents.
The next step for eugenicists was, "Let's do nature's job, and remove the unfit from the gene pool." Unfit at that point included "idiots," drunks, the poor, the blind, the deaf, etc., all of whom were targeted for sterilization, to keep them out of the gene pool. Significantly, forced sterilization of the unfit was put into play in America and Britain decades before the Germans took it up. Fearing that the Brits and Yanks would breed better soldiers and place Germany at a military disadvantage, the Nazis developed their own eugenics program, starting with the elimination (aka murder) of mentally or physically disabled individuals in hospital populations and rapidly expanding to include whole populations of Jews, Gypsies and Slavs.
So in A Thread of Grace, I wanted to face up to the awful heritage of pseudo-science that tainted the beginnings of my own academic field. I wanted to show how easy it was for normal, non-psychotic, well-educated men to become part of the T4 program, and to keep on going, step by step, all the way to the place where they were sorting perfectly healthy people into two columns: one to die immediately and the other to be worked to death on short rations over a period of a few months.
That's why the Nazi doctor Werner Schramm is such a likeable character. He's funny and wry and pretty self-aware, but he's also a thorough-going mediocrity who only got a job in the T4 eugenics program because his father-in-law had contacts. And Schramm's got his own issues -- the hydrocephalic sister, the alcoholic father, the depressive mother. He becomes a doctor, and he wants to fix all this stuff. He truly does desire a better world, and he thinks the world would be better without hydrocephaly and drunkenness and suicidal parents. And really, what's wrong with wishing for a world that wouldn't include all that? None of those conditions is enviable.
That's the moral dilemma I wanted the reader to face. Once the reader gives Schramm the benefit of the doubt on that, where do we draw our own lines? I wanted each reader to understand just how easy it is to move from "I don't envy that life" to "nobody should have to live that way" to "hey, let's fix this once and for all."
While I was thinking about all this, getting ready to write that novel, I also started thinking about Down Syndrome. I was at a library one day and saw an absolutely enchanting little girl. This kid was just so cool, just such a honey, and I thought, Who wouldn't want a daughter like that? She was obviously being raised with full understanding of her differences but also with the conviction that she was valuable and interesting and beloved on her own terms, and her own terms included Down Syndrome.
In the late 20th century, people with DS are mainstreamed -- they're in regular classrooms; they're visible in jobs working with the general public, and in the years I was writing Thread, an actor with DS starred in a TV show. But at the very same time, just as the rest of us are finally giving folks with DS a chance to develop fully and live well on their own terms, there is an unorganized and non-programmatic eugenics movement that removes DS babies from the gene pool. All pregnant women over 35 are offered tests for "chromosomal abnormalities," and if Trisomy 21 shows up, abortion is available and often chosen.
Now, I am not an anti-abortion partisan, but I am an adoptive mother. Our son was born with a clubfoot, and in his natal culture that was considered an awful birth defect and a source of shame to his biological family. When the adoption agency asked if we would consider him, despite that handicap, our reaction was, "Are you kidding? Hell, we'd want him if he was missing the whole damned leg. Who gives a shit about a clubfoot?"
So I know with my own heart how ferociously and passionately a mother can love a child that someone else might think was defective or undesirable. All that emotion went into Mirella Soncini's furious defense of her daughter's existence, a defense that required Mirella -- in 1943 -- to buck her own doctor and her family and her neighbors and her community. "The world is filled with unreasonable hatred," Mirella snarls when she is urged to institutionalize her baby. "What is wrong with unreasonable love?" To me, the most important moment in that passage of the book is when Mirella tells Werner Schramm, "She wasn't a tragedy! She was a little girl. She was my daughter. And she loved to dance."
She loved to dance.
That takes the whole conversation beyond categories and policies and legalities and theories, and brings everything down to the concrete specificity of a little girl, Mirella's daughter, who loved to dance.