India Knight
Win VIP tickets
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.
India Knight was born in 1965. She lives in London with her three children, writes a weekly column for The Sunday Times, and a weblog, Isn't She Talking Yet?, on bringing up a child with special needs. She has also written two novels, My Life on a Plate and Don't You Want Me?
Win a luxury weekend to Newcastle and its neighbour Gateshead, find out more here
Risk, resilience and embracing new technology
Industry sectors news at a glance. Interactive heatmap, video and podcast
Discover the power of collective thinking. Submit a solution and be in with a chance to win a Media Hub Home Entertainment System
The inside track on current trends in the charity, not for profit and social enterprise sectors
Everything the Business Traveller needs to know to make a better trip
Make the most of the summer and enter our fabulous photographic competition, you could win a £5000 holiday
Corsica is an island of beauty and contrast, an ideal holiday destination
Enjoy further reading from Travel to Fashion, Business to Sport, discover more
Shortcuts to help you find sections and articles
The clever way to lease a new car is with Car leasing made simple™
2009
per month on 36-month
Personal Contract Hire (PCH)
2008
42850
Car Insurance
£23,093 - £56,211
The Office for National Statistics
Newport, South Wales
£60,000
The Environment Agency
Bristol
Up to £90K
Boots
Midlands
OTE £85k
Credit Protection Association
Nationwide Opportunities
Completely London
Luxury Condo's in Manhattan with NYC views
The best new homes in Wimbledon?
Nationwide
Fabulous Cruise And Cruise & Stay Offers Including Virgin Atlantic Flights Prices Start From Only £699pp!
Last Minute Cruise And Cruise & Stay Offers. Med From £499pp, Caribbean From £699pp!
5 star quality at a 3 star price.
8 fabulous Canadian cities ...you won’t find cheaper
Contact our advertising team for advertising and sponsorship in Times Online, The Times and The Sunday Times, or place your advertisement.
Times Online Services: Dating | Jobs | Property Search | Used Cars | Holidays | Births, Marriages, Deaths | Subscriptions | E-paper
News International associated websites: Globrix Property Search | Property Finder | Milkround
Copyright 2009 Times Newspapers Ltd.
This service is provided on Times Newspapers' standard Terms and Conditions. Please read our Privacy Policy.To inquire about a licence to reproduce material from Times Online, The Times or The Sunday Times, click here.This website is published by a member of the News International Group. News International Limited, 1 Virginia St, London E98 1XY, is the holding company for the News International group and is registered in England No 81701. VAT number GB 243 8054 69.
Dear Ms. Knight:
I find parts of this offensive, although (I can't help myself), I agree with your main point. I love my kids, and want to be involved in all parts of their lives. That includes a freight-load of therapists and meetings for my two boys with autism. I just happen to be their father, and I'm not aware of this male-vanity-that-causes-guys-to-forget-their-kids that you mention. Nor do I see it amongst the families with special needs kids that I know. At my boys' (special purpose) school, I see far more dad's involved than at the local public school where the 'normal' (a laughable term) kids attend. I think the correct conclusion is that typically, guys rise to the occassion. Out of laziness, business or distraction, we may tend to leave a lot to the "little lady," but introduce a nice little crisis, and "Papa Bear" can roar, too.
Not to say there's not some loser guys out there, but ladies...sort that out before you have children with them...preferably before marriage.
Dan'l, Portland, US/Maine
Some of the comments here show just how far we have still to go in the fight against discrimination (and what is it with the French contributors?).
My son is autistic and, yes, it is a struggle sometimes and I do worry about the future but he is not a "distorted genetic accident" (thank you John of Dundee, you bigot) he is a fabulous, funny, loving person in his own right. Fear and ignorance may well be behind many of the comments here, but so is selfishness, bigotry and elitism.
Thank you India for speaking out about your experiences. I wish you all the best.
Julia, Chester, Cheshire
Men need to be held far more accountable when it comes to their children. It should be made that a man who abandons his children is regarded as as much of a moral monster as a woman who does the same.
Helen Gallagher, wellingborough, UK
When you have a child, there is a chance it will be less than perfect. When you enter a car, there is a chance you will be involved in a road accident. These are risks we are well aware of. It's life. If you develop cancer, or a life threatning illness, would you expect your loved ones to send you away so they could carry on with their lives? Dignity, understanding, compassion, patience are all brought to the fore when you have a disabled child, surely the escalation of these traits can only be beneficial to our society? There are no more winebars or nail salons in my life, i'm constantly stretched to my limit, but the love, friendships, and life lessons i've gained outweigh this a thousand times over.
Laura, campbeltown, Scotland
It seems to be the "politically correct" attitude today that parents must care for mentally disabled children and help them to become "useful human beings." What a burden this is for the entire family! The mentally disabled cannot function normally, and thus affect all aspects of the household. I had clients with an autistic adult son. Both parents cared for him at the expense of everything else in their lives. Finally he had a seizure and died. Both parents, still fairly young, were dead within two years. The stress he caused in life and death killed them both. The boy should have been institutionalized. I feel strongly that mentally disabled children--retarded children--should be given over to the state as infants and kept off the streets, so families can get on with their lives.
Jeanne, Paris, France
"Nobody expects great artists to be lovely human beings" - Why not? And if we don't have such an expectation, isn't that a pointer to something profoundly wrong with us?
KevinDunn, Nedlands, Western Australia
"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 itâs rarely the father whoâs left trying to hold it together. "
Great to see that once more you use the subject of disability as a thinly veiled attack on men. If I read between the lines maybe the woman drove that decision, who knows? Maybe female status and disability aren't great bedfellows, maybe the father's can't hold the family together because women are routinely awarded custody? A bit of objectivity would seem to be in order.
Doug Bates, St. Albans,
I will act the same as Miller.
I do not happy to see "disabled" people on the streets....
Why they are still alive? It is against the God's rules to save theirs lives.
Anna, Paris, France
Knowing the problem to well,I have to say it is better for the siblings not to have to live with a disabled child and for the surrounding family either...because you never have a normal life and I do think it is fair on the other children family.because all the attention just go for the disabled child and the sibling suffer a terrible pressure,and can not have a childhood bse of the diabled child.
I know I sound harsch,but I know the situation ...that why.Before all the medical progress thoses children use to die young but now they will life up to 80.You can not spend you life in a disabled world,being normal for 80 years.
As well,at school other children think you are disabled yourself and bully you bse of sister or brother.
I am sorry to say this is the "selfish gene" and again,before thoses children use to die young...At God will.
We just have one life.
Marie, London, UK.
I spend the summer when I had just graduated from an American high school, working with Down's Syndrome kids with my church. There were kids with other problems there, but I remember this group best for some reason. They could take care of themselves, but needed watching. They were sweet and transparent, a bit awkward and clumsy--as if some Victorian notion of childhood come alive. They could be mischievous and noisy when cross--and sometimes were--there were quarrels. But most of all, I remember them hugging me and one another, like little bear cubs. Smiling, laughing and being silly.
It was a remarkable experience. I don't know what it would have been like if one had been my brother. Rather different I think. Or my son. I am gay and have no children so that is something I'll not know. But any fear I had about this group was gone after a few weeks I came to accept them as they were as individuals with individual needs and limits like us all. I grew very protective about them.
James Sibal, Kew Gardens, New York, NY
As a parent of a disabled child, I found it very sad that there are many people who find the act of abandonment of the so called "imperfect" children excusable. What if the children are not disabled and instead are very sick from severe illness like cancer. Is it still excusable to leave these sick children to the state, visit them once a week or erase them from the family life? I have a friend whose child is severely ill for years and requires around the clock care. I just can't imagine the backlash that the parents would get if they decided to abandon the child. Why do parents with "less than perfect" children like me receive fewer backlash/criticisms than those parents with very ill children if they decided to abandon their children?
Des, TX, USA
It's truly hard to take on a handicapped child. My future husband has a child who cannot speak..she just makes noises and we must interprete. We have 5 children between us 4 doing university studies so not easy financially. But how I would love Fanny to be part of this growing up process, even though it cost money. So hard to be understanding when she screams...
deborah, caen, france
Rather like people who have responded to your blog I too am glad that you are writing about this subject. I have Cerebral Palsy, I was born with it and will die with it. My parents fought long and hard with the world around them and with me, to ensure I wasn't patronised or belittled and that if I was I would know how to deal with it. It gave me drive and determination to prove what I could do and to be valued for my abilities, rather than my largely socially constructed shortcomings. I am now an Oxford doctoral student and lead a happy fulfilling life. I thank them heartily. All the more so because I remember the fate of some of my freinds whose parents were not so driven and as a result lead less rounded lives than they are entitled to.
I thank God for changing times. Disabled people who grew up 10 or 20 years before I did were too often consigned to the dustbin and placated with meaningless menial jobs. Many people like me still are. Workplace discrimination must still be tackled.
Simon Howes, Oxford, UK
The reason the elderly become gaga within a short time of being instituionalised is the medication they are given. which turns them into the living dead.
Margaret, Perth, WA
To Dee of Phoenix AZ, I work for a free legal services organization in Colorado. We help mentally disabled people obtain food stamps, housing allowances and other public benefits they need to survive. Your comment about 'lovely children' bemuses me, Dee. Because I'll bet when the time comes to raise taxes or provide funding in Phoenix AZ for adults with mental disabilities who need public benefits to survive, you'll be first in line to shout no new taxes. And I'll also bet you carry a sign at your local clinic and do a lot of shouting at pregnant women. Over and again, the refrain we hear in the US is anti-abortion followed immediately by rants about the hideous poor who drain the tax coffers. Well, Dee, who the hell do you think the poor are in the USA? Moral failings? How much money and time have you given this year to help the mentally disabled in Phoenix, Dee? I'll bet I can guess.
Mary Ellsworth, Denver, Colorado, USA
David Aaronovitch looks a lot like India Knight today.
Rob Taylor, London,
Well said ; you act as the conscience to us all .Always enjoy your columns.
theodore potts, st. ives, nsw , australia
The point surely is here that these children are not "your flesh and blood", they are your flesh and blood distorted by genetic accident. Genetic accidents are one of the drivers of evolution if they are useful adaptions. But to slag someone off because he had the courage to make a judgement of what is best for his child at the "expense" of another of his children is hardly sensible. Too many mothers think they are the owners of their children and so make judgements based on ownership and sadly on their need to be needed, someone always being dependant on you is a great driver for many women to juvenilise their "normal" children, and partners very often, never mind an already genetically constant juvenile. Before slagging off other people's decisions people should take a hard look in the mirror and ask if what they do is for their benefit. Did I really need to know about the condition of the writers child? Surely that is their medical business and not mine or their mothers.
John, Dundee, UK
Sadly, I think you're right - but thankfully my own Dad was made of stronger stuff. It was his Mum - my Nan - who said: "we don't have Disabled children in OUR family!" - and tried to have me adopted - who had feet of clay.
Chris Page, Letchworth Garden City, UK
I believe experts generally advised parents to put Downs Syndrome children in instiutions fifty years or so I ago. Miller was hardly unique in doing so. I read an autobiograph by some celebrity (Brian Rix?) in which he said he and his wife were unwillingly persuaded to put their Downs syndrome baby daughter in a home. They later felt they'd done the wrong thing.
I understand that Downs sufferers are very varied in terms of how badly they are mentally affected. Some can lead almost normal lives while others are severely retarded. I don't think it's for me to judge a parent who feels unable to cope with the latter possibility.
Janet Davis, Sydney, Australia
No India, most children today do not have the privilage of knowing a child with Down's syndrome. 91%-93% of pregnancies with a diagnosis of Down syndrome are terminated. So now instead of putting these lovely children in homes, parents choose not to deal with them at all.
Moral failing indeed.
Dee, Phoenix, AZ, USA
My brother and I were born with albinism (a genetic anomaly on both sides). My parents fought tirelessly against the discrimination we faced.
I was removed from one nursery school for my own safety as the other children couldn't stand being with such a 'freak' and they strained every budget to get us into private school after being told by the State that we would have to go to a specialist school for the blind.
But my mother, as she admitted once we were adults, always struggled with the fact that she had given birth to freaks; she rarely entertained at home and rarely showed pictures of us to her friends.
My father was always proud of us, constantly encouraging us to overcome any difficulty, he was simply happy that we were mostly healthy.
It is rather predictable that India Knight would choose to blame fathers but it is far to easy a judgement to pass.
BC, Bromley, London
"Writers are, by definition, monsters of narcissism, but even so, Miller's stance is breathtaking." I thought Rousseau topped Miller.
Paul Huntington, San Diego, CA, USA