Disability

The Memory-Keeper’s Daughter

Wednesday, October 4th, 2006 | Disability | No Comments

This novel by Kim Edwards was actually pretty good. It abandons the clipped modern style which I’ve come to loathe and uses something a bit more lyrical, even if it’s closer to Anita Shreve than not. There’s some nice imagery and some kindness towards the reader, I think, and it’s told well, so that you want to keep reading until the finish.

Basically, a doctor delivers his wife’s twins at his own clinic, and ends up giving away his newborn daughter with Down syndrome, telling his wife that she had died, while only the boy, Paul, lived. He lives his whole life with this secret, while their life falls apart because of it. Meanwhile, his nurse, rather than putting the girl, Phoebe, into an institution, takes her home and raises her. Her life is transformed by this decision.

It’s a good way of showing how a split-second choice – to have an ordinary or an extraordinary life – can have such consequences. Sure, it’s simplistic to a certain extent (bad doctor gets punished, good nurse gets rewarded), but by showing every struggle, every continued choice, each moment when the secret could have been told and life could have been redeemed, Edwards makes it believable. It’s interesting historically, because she covers the early civil rights movements to allow children with Down syndrome into schools and jobs (it’s set between 60’s to 90’s), and also the change for women over that period, with the doctor’s wife, Norah, changing from housewife to career woman out of desperation. She also doesn’t make the nurse perfect – she has difficulty accepting Phoebe’s adulthood, for one thing, and the nurse too bears some of the responsibility for the secret.

I quite like the fact that there’s no easy redemption at the end. When they do meet, they meet with the awareness of all that’s been lost. The relationship between the doctor and his wife is never the same again; they end up divorcing. The relationship between the doctor and his son is never easy. There is some resolution when the doctor finally accepts his loss – not just the loss of his daughter but of his sister, whose childhood sufferings prompted the doctor’s decision – and when Norah and Paul finally get to meet Phoebe. But the outcome of that early decision can never be overcome, and that’s what makes the story interesting.

posted by Carly at 12:10 PM 0 comments

October 05, 2006

A Language in Common

Hiphip, Amazon things have arrived and with it this book by Marion Molteno. It’s a set of short stories based on her experiences as an ESL worker with women from the Indian subcontinent living in South London. Interesting for me, because I was always the stranger living with women in India and B’desh - so it’s a different viewpoint where they’re the fish out of water.

I really enjoy her quiet, friendly style. She notices details without ever distancing the reader. While these stories are fiction, she is in it herself as a character, which again makes it closer to the reader.

There’s stories about racism, domestic violence, raising children, changing, having to change despite oneself. And she makes such a clever choice by opening the collection with a section about a guy, an old Indian man, and then moving on from there to women, like opening a wider world.

One of the most interesting stories deals with the writer’s trip to India and her visit to a persecuted minority group there, to which one of her London friend belongs. Again there’s this sense of limited understanding opening up in the face of experience. Which is perfect, because that’s what cross-cultural experience is all about.

Daniel Isn’t Talking

Wednesday, September 20th, 2006 | Disability | No Comments

This is a novel by Marti Leimbach, but it’s based loosely on her own experiences, in that her child has an autism spectrum disorder. It doesn’t say that anywhere on the cover though, which is a pity, because you can forgive bias in personal experience, and this is a biased story. It’s told in the first person – from the mother’s perspective – and it covers her marriage break-up, her work with her son over about a year, and her new relationship with the ABA therapist. She’s an American in the UK (which is a good metaphor for being thrust into a new world where you feel uncertain, just like becoming a mother of a child with a disability), and her husband when he leaves her keeps her in such poverty that she has to sell the furniture to pay for the ABA therapy. Her psychologist thinks she has personal issues, and no one will tell her what’s wrong with her son or what to do with it.

I can see that this book would provoke very strong emotions. For example, the mother secretly thinks it’s the MMR needle that caused the autism, which is valid because it’s still actually a fairly widespread belief among families. The choice of an ABA-style approach would annoy both pro and anti ABA people; because ABA people always think that their approach is the “one true thing”, which annoys the anti-ABA people, while the pro-ABA people would be annoyed because the therapist’s approach in the book isn’t pure Lovaas. Even the concept that having a child with autism will alienate your partner and destroy your marriage would annoy families and probably a lot of fathers as well. But I suppose provoking strong emotions is a good thing to do if you want people to read your book.

Again – you can tell it’s American from the first sentence. Those short clear journalistic sentences, that particular timing where there’s a summary sentence left at the end of a paragraph like a jolt. Easy read. Honestly, someone, surely, must have done some research into this era of writing. I was reading (and won’t review because I won’t finish it because it sucked) a British book which was so obviously British from the first breath but also used the short, clear sentence thing. It’s a late 20th/ early 21st century marker. I can’t wait till writers move past it to something more lyrical.

This is a good novel in that it’s an overview of the feelings that parents must face when they get a diagnosis of autism. (I do have to wonder if Early Intervention services in the UK are that bad – maybe they are, though. You’d think they’d have some sort of Autism Association which would guide families through some of the maze at least.) It’s good for people who don’t know anything about autism, because it’s fairly accurate on what the difficulties are for the children. For families who do have a child with autism, it’s likely to be a love or hate book. It’s not particularly positive. There’s very little out there that shows the uniqueness of a person with autism – apart from stuff they’ve written themselves. Because, of course, they don’t see themselves as broken or alien.

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