What is it about?

The rollercoaster adventures of parenting three kids, dealing with disability and mental health - and discussing disability discrimination and how to tackle it.

Thursday, 22 May 2008

A Thread of Grace, by Mary Doria Russell

Dave Hingsburger, over at Chewing the Fat, initiated a trans-global book club which reads and discusses books with a disability theme or moment. Here is my contribution to the first book we all read, Mary Doria Russell’s A Thread of Grace.

I must admit, I probably wouldn’t have picked up this book if Dave hadn’t recommended it. You see, I’m living in Australia, come from Belgium but am originally of German extraction, and we’ve had quite some family history to deal with. My paternal grandfather had two young kids and no work – so he joined up, and got work instantly. He was sent off to war and never returned. His brother did, but blind and missing one arm, his face full of dark shrapnel patches. My maternal grandfather was drafted into the army, and taken prisoner by the Russians; he spent many years in a POW camp and after the war, was told to walk home. My husband’s grandfather was Dutch. He was taken by the Germans to a work camp, and he too, had to walk home back to Holland. My maternal grandmother, my aunt and my mother were Germans living in Holland at the time of the war, and spend years in a Dutch camp (with other Germans and Dutch collaborators). My grandmother was placed in the women’s camp, while her two young daughters were in the children’s’ camp. War touches everyone, regardless of their guilt or innocence, and the repercussions ripple through the generations. War destroys lives and souls, and is terrible for the individual people involved, regardless which side they are on. As a result, I’ve had a belly full of the Nazi period and I tend to avoid it as the plague.

This bothered me while I was reading the book. While I think it was overall a good read (boy, I definitely wish I could write like that) I kept struggling with the big politics of the book. My mind started wandering when we got into the various partisan factions, the troop movements, and all that. The historical detail was stunning, but at times I found it a bit off-putting, and I kept wanting to speed-read over those sections.

What hooked me was the individual level. It was riveting to read how these big international events affect the lives of ordinary people, people who had no great plans and ambitions, yet were thrown into total disarray. They were forced to move to different countries, learn different languages, pretend to have different religions, and do extra-ordinary things.

As such, I liked the character of Claudia very much – and that’s not only because I hail from the same city. I liked her transformation from innocent, lazy, self-indulgent teenager to cantankerous old woman via peasant and partisan.

But, for the purpose of this book club, let me come to the scene on page 287-291, most defiantly one of the best scenes of the book – and one that touches me personally.

I have to admit that I found this scene a bit forced at first. I mean, what are the chances of a Nazi doctor who was actively engaged in such gruesome events ending up sheltering with a group of partisan women in Italy? My intellectual side kept mumbling, “not likely”.

My emotional side, however, was enthralled. There is so much going on here.

We get the juxtaposition of the loving mother versus the distanced physician. The mother sees a child “She wasn’t a tragedy. She was a little girl. She was my daughter. And she loved to dance”. The doctor sees inferior people "trapped for years in a life of unspeakable, inescapable pain.“

It’s exactly how I end up regularly defending my children and my life. My kids have a disability. They are my kids. They are not a tragedy. The tragedy is the lack of equipment, the lack of services, the under-funding, the debt we go into to obtain the things the kids need. My life is not that of most mothers. But it’s not a tragedy, nor are the kids, and nor is the disability as such.

Doctor Schramm passionately believes that the world would be better off without what he called “mongoloids and cretins”. Yet with all his scientific approach he does not see that at the very core of this belief lies his guilt over his abandoned, unloved disabled sister. Sibling guilt mixed with pseudo-science into a deadly cocktail of arrogance:

mothers like her – they think only of themselves. (…) They refuse to see (…) [t]he wrecked families, [t]he broken dreams, the teeming institutions, like satanic zoos, filled with very sort of biological failure. (…) Those children are like a bomb (…) that kills the whole family, that breaks everything in a home! All the mother’s time and attention goes the weakest. She deprives her other children of her care. She neglects also her husband. It is natural that he should leave! And for what? A child who will never contribute anything to society!”

It comes here in the character of Herr Doctor Schramm, a German male, Nazi scientist who did medical experiments on these “undesirable” people – it doesn’t come in a more extreme character.

Yet the scariest thing about Schramm’s opinion is how much of it is still alive and well today. How close is current medical genetic research to aiming to improve the human race? How often do you still hear so called “facts” about people with a disability banded about without any basis in reality - such as when Schramm states that someone with Downs Syndrome never learns to control their bowels, “a proven fact!”.

And when Mirella tells Schramm: “Doctors. (…) You look at people for ten minutes, and you think you know everything about them!”

Some of the medical appointments I sat in came to mind, and I fear that despite years of scientific research and improved knowledge, doctors’ preconceptions have not evolved that much….

At the same time, the accusations of Schramm stung. I am the mother of three children, two of which are disabled. I do fear, every day, that my middle, neurotypical child, gets less of me. While I certainly think my other two don’t contribute to society, I think every parent feels guilty at times for not spending enough time with their kids – or feels guilty for favouring one child over another. This is amplified in the case of a sibling of a special needs child – as much as I worry about my disabled kids, in many ways the one that causes me most headaches is the non-disabled one.

Before I finish, I must point out that two sentences in the novel have stayed with me since I read it. Interestingly, both are uttered my Mirella. On page 289-290 she is quoted as having said “The world is filled with unreasonable hate. What’s wrong with unreasonable love?” Another thought Mirella often expresses is “If we can help, we should help”. I think about there words pretty much every day. And when I can help, I try to stop in my (busy) tracks and help.

So, a book I would not normally have read, has shifted things in my life. Thanks, Maria, and thanks Dave.

On a minor note, I felt a bit cheated not finding out what happened to Liesl and Frieda Broessler. All the other characters were tied up nicely at the end of the story – we know who dies and who survives. But dit the Broesslers ever find out what happened to Steffi, and did they survive?


Dave Hingsburger said...

Wow, your book review is the first I'm reading today. I agree that Thread of Grace may not have been the most obvious choice - but I felt that it held such a strong message - carried by the mother of a child with Down Syndrome, that I could not resist ... and who doesn't need to hear, in our society, about the power of unreasonable love?

Anonymous said...

Hi Heike, I followed your link from Dave's blog and enjoyed reading your review. You almost make me wish I could go back and rewrite mine.

Thank you

Emma said...

Thanks for this Heike, it's interesting to read the thoughts of someone else who has read this book and who comes from a similar "place" (disability experience) to me. As someone who deals with depression as well as CP, I think the line that has stuck with me the most is the recurring theme of "save your tears, you may need them someday." But I also like the "she loved to dance" scene too.

manfred.fabig said...

Heb dit stuk vertaalt en ook aan Anita verder gemailt. Wij kennen dit boek niet, maar ik vond toch interessant wat je over de familiegeschiedenis schrijft. Wij praten da nog eens over als we komen, want een ding over mijn vader heb je foutief geschreven. Maar maakt niets uit.