Minette Marrin
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Eugenics is one of those knock-down words used to silence argument. It was used several times last week, in radio discussions and articles about women choosing to give birth to babies with Down’s syndrome.
The subject came up partly as advance publicity for a Sky Real Lives television documentary this Wednesday about a heroic young woman who adopted seven babies with Down’s, whose mothers had rejected them. There was also a BBC news story last week suggesting that more women these days are knowingly choosing to give birth to babies with Down’s.
In fact the news story was misleading.
Actually, the proportion of pregnant women who choose to abort their foetuses when antenatal screening has detected Down’s syndrome has remained constant since screening started, at about 91%. Also the number of Down’s abortions has tripled since 1989. The total number of babies born with Down’s each year has indeed increased since then, but not by much. This small increase may be due in part to the fact that many women have children when they are much older these days, and some of them refuse antenatal screening.
This misleading news story provoked an impassioned response. Several parents of babies and children with Down’s, and representatives of pressure groups, said publicly how much love and happiness such children bring, despite any “challenges”, and how they can, with support, live happy, independent lives.
More or less disguised was a strong tone of moral disapproval of anyone who feels that the birth of a Down’s baby is a misfortune, to be avoided if possible. Hardly anyone now dares to say so. The word “eugenics” is often used by Down’s lobbyists to make the nasty suggestion that people who think it is right to abort a foetus with a Down’s diagnosis are as bad as Nazis. This is argument by abuse.
I protest out of long personal experience.
Someone close to me in our family has a learning disability, which has been a handicap and a sorrow to her, and my lifelong experience of children and adults with learning disabilities, including many with Down’s, as they have grown older has given me a different perspective. I am convinced that it is a grave misfortune for babies to be born with Down’s or any comparably serious syndrome. It’s a misfortune for their parents and their siblings as well. Sad observations over decades have convinced me: a damaged baby is a damaged family, even now.
I resent the moral condescension of those who claim that people who think like me are not only wrong but hateful; there have been vicious attacks on me in the blogosphere by disability-lobby extremists. My point of view does not make me a heartless eugenicist.
For one thing I do not think that any woman should be pressed, for any reason, to have an abortion. To do so would be wrong. She must be free to choose and free to make a bad choice. What’s more, I firmly believe that people with disabilities should get all possible help and understanding to lead fulfilling lives, from society in general and from the taxpayer.
My belief that certain foetuses would be better not coming to term has nothing, logically, to do with my belief that everything possible should be done to help babies who do come to term and are born among us to share our imperfect world.
There are some strange contradictions surrounding the question of abortion. People who reject abortion as always wrong are consistent and one cannot argue with them. But anyone who thinks abortion is acceptable under some circumstances, and who yet disapproves of what’s emotionally seen as “eugenic” abortion, is in an untenable position. After all, people accept abortion for certain “social reasons”, and what more powerful “social reason” could there be for an abortion than the virtual certainty that the foetus would be condemned to a life of frustration, disappointment, dependence, serious illness and poverty, to the great sorrow and hardship of its family?
I listen with amazement and sadness to new parents of Down’s babies describing a rosy future of love, acceptance and independence (with “support”, of course).
The truth is, though people are too compassionate to point it out, that support is in short supply and is expensive. With or without it, Down’s children face a future blighted by low or very low intelligence and by a high risk of heart defects (30%-50%), intestinal malformation, leukaemia, kidney and thyroid disease, poor hearing and vision and early-onset Alzheimer’s (25% as opposed to the normal 6%), as well as increased chances of diabetes and seizure disorders, including impaired executive function.
In a hyper-sexualised culture that worships bodily perfection, beauty and sexual success, adult life is also bound to be painful for people with Down’s.
When they are babies and children, that may not be a problem. What happens, though, when the Down’s child becomes a teenager, interested in how he or she looks and keen to discover love and sex? It is all too predictable – a growing sense of sexual rejection. Any babies born will be taken away, probably rightly. It is heartrending.
In every other way the doors to adult life will seem all but closed, despite everyone’s best efforts to push them open. Without a great deal of help, a person with Down’s will find it hard to get and keep a job. At a time of recession, with social services understaffed and underfunded, there will be little money for social care. Even now there is nowhere near enough money to help everyone with learning disabilities lead a full and semi-independent life.
Then comes the hardest question of all – what happens when the parents die? The best of social services can do only so much, and it is never enough. Loving brothers and sisters may help, and help a lot; they may well have to, until they die, though they themselves did not choose to take on such a time-consuming, lifelong responsibility.
Most pregnant women instinctively understand all this. That’s why nearly all choose abortion. Those who choose differently should understand they are choosing hardship, perhaps great hardship, for their child and for their other children. This has nothing to do with eugenics and everything to do with the painful complexity of moral choices.
Minette Marrin is a journalist, broadcaster and fiction writer. She is a columnist for The Sunday Times, and has also written for The Sunday and Daily Telegraphs and The Spectator and The Asian Wall Street Journal. She regularly contributes to television and radio programmes
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Minette writes " . to a life of frustration, disappointment, dependence, serious illness and poverty, to the great sorrow and hardship of its family?"
As a parent of 3 children without a disability I know the above can apply to all children. This is thankfully very outdate view of disability.
Chrissie Taylor, Woodend, Australia
Perhaps we should not let anyone different than those in our own perfect circles to exist among us! Marrin seems to think that people with Down syndrome are fairly useless. I've got news for you! Today, many adults with DS work, live independently and marry. Imperfect = unhappy? Ridiculous!
L. Edwards, Virginia, USA
I just got back from the pictures. I went with my daughter Katie and my son Dan. Dan picked us up in his van. We had a great time and Dan dropped us home. Oh by the way he has severe CP and lives in his own flat with full time support from a team of PA's and I am very happy he is who he is. So is he
Marion Stanton, Halifax, West Yorkshire
You say that having Down's syndrome means that adult life is "bound to be painful". That's not true. I work with people who have Down's syndrome and they have their difficulties but then so does everyone, but their lives certainly aren't painful.
Kathy, Andover, UK
I have two children with autism, and I think there is an important distinction between Downs and autism, to take two examples of disability. Downs becomes much more likely for women over 40, but there is no age link with the incidence of autism that I know. Have children younger to avoid Downs.
Bart, Portsmouth, UK
This 'woman's right to choose' people talk about is always left as an unfinished sentence. When finished it reads: 'a woman's right to choose to kill another human being' and suddenly seems less of a winning argument. Downs syndrome or being the wrong sex... should not incur the death penalty.
Ben Trovato, Uk,
whether or not you agree with the testing that leads people to being faced with the choice of termination, being presented with that choice is awful ... either decision has its heroic and selfish motives ... unless you have had to make that ultimate decision you will never understand
Jaynie, Shropshire,
I have a nine year old girl with DS. The sorrow I feel comes from a society which does not understand her neither does it want to. In pre-testing times doctors told us to leave our children in institutions and forget we'd had them. Thankfully parents didn't listen. Human strength always wins thru
Claire, Newry, Northern Ireland
Care in later years will be necessary for almost all LD children.Their siblings cannot be expected to shoulder the burden.Wills and trusts can help with finance but not much else.Society needs to rethink the care system.Small communities with everyday care are best.A not 'The' community .
Tom Simcock, tarporley, Cheshire
The term 'disabled' can be misleading. Downs Syndrome people have a range of abilities which differ from those emphasised in our busy society. Meeting and engaging with DS people, I meet people who are distinctive emotionally, and I value that difference positively. Appropriate education is critical
Colin, Perth, Scotland
and what about the child they would have birthed, a few months or years later? DIdn't that would-have-been child deserve a chance? This family would have gotten pregnant again, I'm certain of it.
rocco, nyc, usa
Many people feel this way. Thanks for having the 'nerve' to write it. I know of a family whose severely handicapped child should have been aborted. I would not dare have the nerve to even hint I feel this way. The child (worse than Down's) can't hear, see, walk. Everybody thinks they are saints
rocco, NYC, USA
My brother has DS and although I believe in freedom of choice I believe articles like this paint an ignorantly negative and offensive view on the lives of people with disabilities as it is not all hardship, disappointment and sorrow, in fact it has been quite the opposite!
orla, Dublin,
There are too many glaring errors in your piece to consider them all, but I will point out one incorrect assumption you make; you continually imply that people with Down's syndrome won't ever enjoy sexual relations, or any kind of sexuality. They can, and they do. We live in the 21st century!
Hannah, Darlington,
It is disingenuous to write of "moral choices" yet censure women who, you say, "make a bad choice". What are you if not a eugenics apologist? For those women who abort babies with trisomy there is no guarantee of "perfect babies and happy families" the next time round. Read India Knight's blog!!
Claire Durtnall, London , U.K.
What will happen to my other children if I or my husband die young - they will still need care and love (and money to help them through university). We have done what any sensible person would do and made provision for htem in our wills.
Liz Crowter, Coventry,
The Downs baby is a blessing is a challenge and as such, will bring hardship and joy. Every downs baby I have met that was raised in society among loving parents and siblings has grown to be be happy and well adjusted, working and taking pride in it and blessing everyone who dares to get to know.
Robert Grindrod, Syracuse, USA
Additionally, say one of my other children has an accident that leaves him/her mentally and/or physically handicapped. Should I take them out behind the barn and put them down?
Get real! Life is LIFE!
Gretchen Peters, Marshall, USA
The columnist clearly doesn't know much about unconditional love. I'm very glad to have my 'damaged' daughter, who is very much loved member part of my wider, so obviously 'damaged' family.
Chloe , Cirencester, Gloucestershire
What a horrible, condescending article. Many people with DS babies do not share this woman's pessimism regarding life. Some do not regard their decision to have such babies as a "bad choice." The fact that their lives are imprefect does not mean they should not be born. Who has a perfect life?
Mary, Oklahoma, USA
Words have meanings.
If you support or promote the abortion of defective fetuses, then you support or promote eugenics. This is a simple definition of terms.
It is not for the pro-life community to accept a new definition of 'eugenics' simply because it injures your sensibilities.
Matushka, Lexington, USA
Life isn't easy. We can run away from difficulty more successfully than our ancestors, but we lose the opportunity to stretch and grow in it. My best friend has an autistic son. He's a hard challenge & we don't know how he will turn out, but she & her family are growing deeper through it.
Audrey, Squaw Valley, USA
It's true, life can be hard for people with Down's Syndrome and especially for the ir parents, many of whom are caring until the day they die.
Surely though, we have to fight for more support, not just avoid people being born. ENABLE Scotland are running a campaign- http://www.enable.org.uk/campaigns.php?sid=131
Jane, Edinburgh,
Articles like this make women think that they are condemed to hardship and family ruin if they continue a pregnancy carrying a child with DS. They are not. Prospects for people with DS have changed radically in the last 30 years - something someone in Minette's position should well know.
Annabel Tall, Bristol, UK
It should be noted that most of the 'disability-lobby extremists' whom Marrin claims are 'attacking' her are disabled people, some of whom have DS, who find her views grossly offensive. So if you have DS, you're either a 'misfortune' or an 'extremist' - as opposed to a person wanting respect. Hmm.
Victoria, Newcastle,
It makes me cringe when I read or hear the words Down's child, it sounds like they ar some kind of strange race or alien. My son is a child with Down's Syndrome, he is a person in his own right first who happens to have Down's Syndrome. I am so happy that he is alive as he is perfect.
Brenda, London, England
Let's assume for the sake of argument that you're right in saying that those with Down's will have a hard life and will make life very challenging for those responsible for their care. The key question is whether that is an acceptable reason for killing a person. Is doing so morally right or wrong?
Marcus , London , UK
I have a second cousin with Down's. After her mother died she went to live with her sister. Her sister, now in her 70s, can no longer look after her. She is now 68 and her behaviour, which was cute when she was young, is now embarrassing and rather frightening.
william, Northwood,
Our 31 year old daughter with DS has enriched our lives. She sails happily through life with no sense of rejection or disappointment. We think she's beautiful and so does she! Her health is excellent. We love her innocence and total lack of guile. She has been and is a blessing.
Noel and Elena, Newark, Nottinghamshire, UK
Don't really appreciate the word 'damaged' when describing these children, feel very upset as I am writing this as I have a Niece that has Downs who has brought happiness to our family and everyone who knows her, yes we do worry about the future but she is certainly not damaged.
Amanda, Tring, UK
well done Minette . I am a retired teacher with over 40 years experience teaching children and adults with multiple handicaps including Downs syndrome. I loved my work, and loved all my charges but as a teacher and as such often a counsellor Minette said what need saying.
Christine Born, williamsburg, USA
You couldn't be more wrong about Down syndrome. Perhaps you should talk to families who have a child with Down syndrome. I have not met a family yet who feels that having a child with DS is a burden. My son (w/ds) is the light of our family. It's very sad to me that people like you have no clue.
Judy, Ventura, USA
A callousness about the value of human life permeates Marrin's viewpoint, because if abortion ends up as eugenics, then whether any foetus comes to birth depends upon the preferences of the woman. How can anyone determine the worth and quality of another's life before it is even lived?
Lee, Birmingham,
Let me get this straight: you think babies with Down Syndrome should be aborted because they might not have a great sex life? Many people--with all the correct bits and pieces--have unfortunate romantic and sexual lives, Marilyn Monroe and Princess Diana, for two.
Rachel Cohen, Los Angeles, USA
I still remember the anxiety of waiting for the result of amniocentesis when 5 months pregnant. It was very much a wanted pregnancy but I would have aborted if Down's had been detected. I'm glad I didn't have to make that decision.
DMB, Lausanne, Switzerland
ecellent,balanced and humane,article. well done minette!
neil, london,
As the sister and eventual caregiver of a mentally handicapped man, I resent the idea that his life is worth anything less than yours or mine. Please do not blame, resent or judge those who are handicapped, it's not a choice they've made. My brother has right to a full life, just like you.
Jodi, London,
This is still too much of a generalisation. My child with down's syndrome is on the higher end of ability and has much to offer the world. Nobody knows the future for their children, drugs, unemplyoment, depression, abuse.. when you decide to have a baby the future is never predictable.
Liz, Shifnal, Shropshire
My eldest has autism. My younger does not. She will be his caregiver long after her father and I die. She didn't ask for this, she accepts him as he is--always has. Would I have brought him into this world had I known? Life is hard enough for the normal.
Lina, Auckland, New Zealand
Also, what happens when one partner wants to abort a Downs
foetus and the other does not ? A lifetime of deep, bitter resentment ? An otherwise solid relationship fractured? these problems can arise over the birth of a healthy child, so the problem must be worse for the parents of a Downs child
phil dolman, wirral, UK
Hi, Am well qualified to have my say, as I have a daughter with a rare syndrome, not diaganosed prenatally. She has suffered ongoing surgery, social rejection. I am forever anxious about her economic/social future. Still, I'm glad I didn't get the opportunity to make that choice. I never judge.
Jude, Auckland, New Zealand
thank you, minette
rosemom, sacramento, ca, usa
Completely agree. It is a mothers free and informed choice and no one has the right to judge another's unique and personal situation.
Alex, Toronto, Canada