The betrayal of imperfect children - By India Knight

Posted by ProjectC 
By India Knight
September 2, 2007

I was delighted the first time I met an adult who knew what I was talking about when I mentioned my youngest child’s condition, DiGeorge syndrome. “Oh yes,” she said. “My sister has that.” I was brimming with questions, given that my daughter was a tiny baby and my friend’s sister a middle-aged adult.

She didn’t have many answers, it turned out, because her sister had been sent to a “home” — a bit of a misnomer — when she was small, and had remained there since. My friend spoke of her ongoing anger at her parents’ wrongness in choosing this course of action in the 1960s: the sister could have lived at home perfectly easily — she was not in need of 24-hour medical care, and only mildly “disabled” — but shame got in the way, so off she went.

Prior to this, the parents had insisted that she was “perfectly all right”, too embarrassed to ask for help or to admit to a problem. Fifty years on, while the sister appears to be content in her institution, it is fair to say that, much in the manner of compos old people who are institutionalised and become half-gaga within a month, nobody has exactly pushed the boundaries with regard to her development. She shuffles along blankly when she could be living life.

I also remember the son of my mother’s friend when I was a child. He was my age and had “something wrong with him” — to this day, I don’t know the name of his condition, which was never discussed with any honesty, and it’s too late to ask him because he died some years ago. His parents loved him, of course, and I loved him too because he used to let me brush his hair for hours on end.

But one day he disappeared and when I asked where he’d gone, I was told he’d moved to live in the countryside with the cleaning lady, who’d always loved him dearly, because “it’s so hard for X to look after him”. X employed staff and was a lady of leisure; surely, at least, the cleaning lady could have moved into the house? Apparently not. She and her husband remained in touch with their son — weekend visits and so on — but he didn’t live with them.

Nobody appeared to find this arrangement peculiar, though I have no doubt it caused the mother great pain. Reading between the lines, I also strongly suspect she conceded to this arrangement to save her marriage: male vanity and disability are not good bedfellows. A huge percentage of marriages break up when a disabled child comes along and it’s rarely the father who’s left trying to hold it together.

I was reminded of this last week, reading about the late American playwright Arthur Miller, who had a child with Down’s syndrome with his third wife, the photographer Inge Morath. Miller committed the child, Daniel, to an institution when he was a week old, because he did not want his daughter Rebecca growing up with “a mongoloid”.

Daniel’s existence was concealed from the outside world and not mentioned in Miller’s memoir, Timebends. “Inge wanted to keep the baby, but Arthur was not going to let her keep him,” a friend of the couple told Vanity Fair magazine.

Aged four, Daniel went on to Southbury training school “for the mentally retarded”, which housed nearly 2,300 people in rooms containing 30 to 40 beds. His mother went to see him almost every Sunday; his father never did. A disability rights activist who used to visit Daniel said his only possession was a tiny transistor radio with earplugs.

He left at 17, went to live in a group home with five housemates, and then moved to a “supported living” programme, which enabled him to live in a flat with a friend. He worked at the local gym and then at a supermarket and competed in the Special Olympics in skiing, cycling, tracks and bowls.

Daniel is now 40 and lives with an elderly couple (shades of the cleaning lady) who have cared for him for some time. Rebecca Miller, his sister, told Vanity Fair that “Danny is very much a part of our family” and “leads a very active, happy life surrounded by people who love him”.

Rebecca is married to the actor Daniel Day-Lewis, who was apparently instrumental in effecting a rapprochement between Miller and Daniel in the late 1990s.

Daniel met his father in public for the first time in 1995 — the great man, a Pulitzer prize winner, was giving a speech in support of a disabled man who’d been convicted of murder. Daniel was there and ran up and embraced him and was given a hug by his father. “He was thrilled,” a friend observed of Daniel. A few years later Miller graciously attended a two-hour meeting about his son’s care. “He was absolutely amazed at Danny being able to live out on his own,” said a social worker.

This suggests that Miller, self-appointed conscience of America and holder of the highest moral ground, was capable not only of cutting off his own child when he was a few days old, but that he had so little interest in his condition that he didn’t see fit to inform himself of what people with Down’s can and can’t do.

Writers are, by definition, monsters of narcissism, but even so, Miller’s stance is breathtaking.

Commenting on this Martin Gottfried, Miller’s biographer, said last week: “All that people care about are the works themselves. In England, where Miller is considered an equal of Chekhov, all they care about is that Miller is a great, great playwright. If he wrote Death of a Salesman, he could be the worst son-of-a-bitch that ever lived, but he still wrote those plays.”

I hope this isn’t true. Nobody expects great artists to be lovely human beings (just as well, as they’re often unpleasant egomaniacs), and it would be naive and pointless to let one’s feelings about Miller’s personal life colour one’s judgment of his work.

But shame about the perceived “failings” of one’s own flesh and blood is a moral failure, and while it is worthy of some sympathy, it shouldn’t be discounted lightly or excused.

I would imagine most children today know a child with Down’s syndrome or another disability; there’s a prime-time drama about Down’s on BBC1 tonight, and all of this bodes well for the future. But we shouldn’t forget the recent past either.

When I started my special needs blog, I got a lot of e-mails from people who were pleased that I should be writing about such an “unglamorous” subject. There’s a thin line between “unglamorous” and “embarrassing”, and still too much overlap between the two.