WTF??

My colleague Minette Marrin writes the most extraordinary column in today's Sunday Times, about her apparently heartfelt belief that 'certain foetuses' should not 'come to term'. Certain foetuses include those with Down's, she suggests (see post below on this topic). They make everyone all miserable and stressed, and aside from anything else, it's awfully hard for them in a 'hypersexualised culture that worships bodily perfection'.

Can't be easy for ugly people either, I'm thinking. Or fat people. Or short people. I know! Let's get 3D scans of them in utero and hoover them out if they aren't aesthetically pleasing. I mean, poor things, it's not like anyone's ever going to want to have sex with them. And what about old people? Exhausting drain on their families, and unsexy to boot. Kinder to cull 'em, really. Plus they often show signs of mental retardation - where's the fun in that? And don't even get me started on the poor.

"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?" Minette writes, like a time traveller stuck forever in 1970. (All of the above could apply to, say, a soldier back from Afghanistan minus his lower limbs. Do we chuck him in the bin, too? Should we all, in fact, chuck ourselves in the bin, and be done with it?)

I like 'virtual certainty'. I mean, f*** science. Bugger medicine. Take your research and shove it. 'Virtual certainty', innit? No jaw-dropping medical advances taking place every year, dear me, no. Sure, your hole-in-the-heart baby - to pick one example at random - would have died  not very long ago, and is now likely to lead a full and active life, heart fully repaired, as though nothing had happened. Life expectancy for people with Down's has doubled since the 1980s - but hey. Let's not nitpick. Or, you know, believe in the fundamental decency of human beings, or in the possibility of finding joy - and pride, and strength - in unexpected places. Let's not, God forbid, believe in the crazy-ass concepts of hope, or faith, or love, or imagine that some children with disabilities might have happy, fulfilled lives and light up their families' every day. That would be delusional, defensive talk. Minette knows better.

Unlike the writer of, and contributors to, this blog, she's an expert. Her website says she "has a special interest in learning disabilities and was a trustee of The Home Farm Trust (which provides services for people with learning disabilities) from 1996 to 2005. She was also, until May 2006, a member of the Ethics Committee of the Royal College of Obstetricians & Gynaecologists.

In 2000-01 she was a contributing member of the Working Party, producing 'Women in Hospital Medicine, Career Choices and Opportunities, A report of a working party of the Federation of Royal College of Physicians'.

She is a member of the council of the Centre for Policy Studies."

Read the piece for yourself. Someone in Marrin's family (she doesn't say who) has a disability (she doesn't say what). She writes: "Sad observations over decades have convinced me: a damaged baby is a damaged family, even now."

Speak for yourself, love.

The article is here.

Comments

[cd]

I have just read MM's article again, and as a teacher I was mortified, as a person I was truly disgusted,
I agree entirely with IK, love not anything else should be the accounting factor. How can it be right to suggest children, any children "damage"families?
some of the most rewarding times of my career have been spent with these "damaged" children.

[HM]

Great Article! I knew at 20 weeks gestation my son would be born with Down Syndrome. We were scared about what the future would hold but have NEVER regretted our decision. Our son has only strengthened our family and has brought only happiness and joy! And guess what? He's more alike than different from typical 2 year old children!

[jac]

From a different perspective, I think life for children with disabilities is very very tough. My own sister was routinely abused whenever in care. She had a mental age of 18mnths - but those delightful abilities she did have were crushed by experiences in the care system that are so horrific I cannot write them down. My parents therefore looked after her for most of her life. She died 2 years ago aged 43 but the day she died I felt she had been released from more or less unmitigated horror.

I loved my sister very very deeply. I didn't see her as less of a human being but she didn't deserve the life she went through and it would have been far far better if she had never had to endure it. I still wake up at night, every night and deal with the thoughts of her abuse.

There is a whole industry - including those doing 'charitable works' - set up to promote the idea that children like my sister can have wonderful meaningful lives with the assistance of the marvellous care services. This is a myth. When the parents aren't there to support their children, someone is putting the boot in, and when the family try to protest or protect their relative, the doctors and social services jerk into action to cover themselves and deny any wrongdoing. There is ALWAYS a reason for those bruises.

The people who look after people like my sister spend a lot of time cultivating an image of themselves as wonderful carers and society needs to believe they are. In fact, almost without fail, if I tell people the my sister was seriously abused in care, they will start providing excuses "o it's a hard job though isn't it" - would people say this about a normal child?

I respect parents who look after children with extreme difiiculties and I think those disabled children/people are wonderful and beautiful and blameless and deserve a good life, but my long long experience of what life is like for these people when the parents can't do it any more, is that it's horrific and painful and for that reason I think it would be better if they didn't have to go through it.
My advice - with the best intentions - to parents of children like this, is trust noone (especially the most obsequious) and keep your eyes open.

[India Knight]

Hmm, and who could you possibly be, I wonder? You sound strangely familiar... Nope, it's gone. Nice comment about "using my family for journalistic fodder". Classy. Humane. Full of understanding about the purpose of this blog - but then I see this is your first visit. Now go away, before I start using "crass language".

[S]

I understand the emotion that is behind all of these comments and all of this unnerving outpouring of hatred against Minette Marrin.

However, I really think you should all read the article again clearly. (And for those of you who admit you haven't even read it, maybe you should not take IK's analysis at face value.)

It is so easy to make inferences that are in fact not there when reading an article that seems to speak against one's own very personal life.

I too often disagree with MM's pieces, but I like to think I read them carefully and rationally.

She does NOT say that she thinks DS foetuses should/ must be aborted. She does NOT think DS children and adults are of less 'value' than others. However much you may denigrate her efforts, she has done a huge amount of work for charities and organisations that precisely support the rights, freedoms and happiness of people with DS.

It is India Knight, who makes such cheap and personal accusations, uses such crass language ('move on love'), and even misreads the article itself, who is the real hack.

This is a highly emotive subject, and a highly personal one too. Perhaps the use of the word 'damaged' was what really angered people, but to admit life with DS is difficult and has its idiosyncratic challenges is to speak truthfully, not without love. If Minette Marrin has the bravery to be honest - however upsetting that may be, and however much people may disagree with her - about such a complex and sensitive issue, which she has close personal experience of (however callously and ignorantly India Knight tries to undermine that fact- perhaps MM prefers not to use her family as lifestyle journalism fodder), it would be kind to treat her with the humanity and acceptance that you accuse her to be so lacking in.

Surely, if we are trying to be a progressive kind and tolerant society, as you all so frequently assert, there is room for argument without abuse.

[JG]

I notice Minette was 'away' yesterday and didn't have a column - I hope this has something to do with her realising how deeply offensive her comments were last week.

I have a ten year old with a learning disability and another daughter with a form of asperger's. They are both adopted and both probably suffer the effects of foetal alcohol syndrome. Basically, they lived lives similar to those of Baby P but were saved.

I have come on such a journey since adopting the girls. Some people simply cannot see past their difficulties whereas others have embraced us as a family.

It IS difficult to get the services right for children who are different, especially as they grow older. A lot of people dropped away after infant school - the change in attitudes was quite remarkable. You definitely find out who your friends are.

Cat, I do hope you get some support. You might find some personal counselling for you helpful - your GP would be able to organise this. It sounds like you are struggling with a lot of too-big feelings - I have gone down this route myself and it was very helpful.

[Patricia]

I missed Minette’s article but having read yours yesterday I rescued last Sunday’s Times from the recycle bag. What sad reading it made. I thought that we had got passed that kind of prejudice.

Back in the sixties I did some voluntary at the local special needs school (it was called Educationally Sub-Normal then) for boys. The children there were a delight; they seemed to find so much joy in just being alive.

My oldest son had a milder form of autism and that was hard. People who didn’t know us thought he was just badly behaved. We were fortunate in finding an excellent preschool run by an ex nurse who had had experience with children like my son. He didn’t do so well in mainstream schooling so when he was eleven he got a place at a special school for children of high intelligence but who had learning problems. At three an IQ test showed that he was borderline but by ten it was 140! He’s married now and has a good job. According to Minette he should have been thrown on the scrapheap.

Unfortunately, suffering is part of life. It comes to us all one way or another. Our attitude to it in ourselves and in others shows what kind of human beings we are. If she is so concerned about the financial burden on families and society, what about the increasing numbers of the elderly? Maybe she would like to do away with us too. It’s where her kind of thinking leads.

A few years ago I wrote this poem. I don’t know where it came from but here it is; I hope you like it.

DOWNS

Little child standing,
His face shows all that he is.
People staring,
Their faces tell all that they see.
Little face moon shaped,
Eyes that are slanting
And a life too sorry to be born.

Oh, pity the incomplete child.

Little child standing,
His face shows all that he is.
Mother watching,
Her face tells all that she sees.
Joy and sorrow,
Tears and laughter,
And more love than can ever be told.

Oh, thank God for my wonderful child

Pat

[Claire Durtnall]

Excellent piece, India. My youngest with DS is happily integrated in mainstream school, adored by his big brother (a choral scholar at Oxford uni) and big sister (amazing muscian and artist). None are 'damaged'!

[Nick McGivney]

Plain to see what happened here. MM was a 'trustee of The Home Farm Trust, which provides services for people with learning disabilities', until they en masse rose up and chucked her off the board. What can they have been thinking, the poor, blighted souls.

And S, a couple of comments up? Inspired rewrite by you and himself. Hack is right.

[Liz Crowter]

How can the post by Down SYndrome hater have been approved? Surely this is a mistake.

Brilliant article. I have challenged MInette to meet my 13 year old daughter who has DS and tell her, her life is a misfortune! What a surprise that she hasn't yet taken me up on my challenge!!

Meet Heidi on www.heidicrowter.com

[Fiona]

Cat, My daughter has an undiagnosed condition (picked up at 20 months) She is now 9 and has microcephaly, moderate-severe learning difficulties, epilepsy and a whole host of other charachteristics. I felt the early days of diagnosis were the worst. I felt like my daughter would be better off with someone else, I felt someone else could have coped with her better. Day in, day out, I felt like someone had taken all my internal organs out scrunched them up into the tightest ball and then decided to put them back in again. I used to fantacise about walking out of the door and never coming back again. But honestly, with time, this feeling subsided and life became 'normal' again.

We were quite lucky as Penny had access to a special school from an early age (2 but we decided to send her at 3) This was a great deal of help to us but it was also a great deal of help to her. It also helped us become part of community and helped us to feel as a family, we were not alone. She still goes to special school now and she is a happy, healthy little girl who is just alot slower than her neuro typical (normal) peers. She has however, made friendships with her own peers and in my own opinion has a very good quality of life, better than some 'normal' people I know for sure. We also get help from social services in the form of direct payments which helps us function normally as a family. It helps us pay for care and it helps our two nuero typical sons have a 'normal' childhood. Life for us is now normal, it may be different from other peoples family but it is normal to us. Penny may be different from other children but she is Penny and she is still the daughter I carried for 9 months of pregnancy and she is still the daughter I gave birth to, nothing has changed and I love her just as much as my other children.

I know life seems hard now Cat, but it honestly does get better and easier. Give yourself time to grieve and have some counselling if you need to (I know I did) But do look after your self.

[Qadoshyah]

Great response, India!!

I have a WONDERFUL brother witth DS. It's sickening to read articles like Minette's! According to Minette, I guess I've just been decieved and I'm living a "damaged" life. Yeah right! My brother brings us so much joy and brightens up our days!!

Qadoshyah

[Julian]

A wonderful riposte, thank you.

Ms Martin, the reason that you get people calling you hateful is that you ARE hateful.

[Phil Georgiadis]

What a relief to read your response...I posted a reply to her nonsense at 7am and was fuming...it was never displayed.I fumed even more. I feel better now.

[claudia]

I have stopped reading darling Minette's articles because almost every time, for one reason or another, they left me speechless with fury. Maybe she's just trying to be provocative, but her outdated, reactionary views about ... more or less anything! (role of women comes to mind) should have no place in a paper like The Times

[Jill]

Cat - oh honey, my heart goes out to you. Having a child who is different is incredibly tough & only people in the same boat as you can understand exactly what you are going through.

India's advice is spot on. Find a support group (either face to face or on line) other people who understand your situation become invaluable friends. I wouldn't have survived without my ASD website.

I think what's pigged most folks off is Minette's implication that all parents who find they are expecting a child with Downs (and for me that equals any parent expecting any child with difficulties) should have an abortion because their life will be awful, as will the child's and just a burden on society.

I am pro choice. It is quite possible I would not have gone to term had I known my son would be autistic - I don't know, I wasn't put in that awful position, I didn't have to make that terrible choice. But I hate people generalising & telling us what to do when they clearly have no idea. It's these types of judgemental attitudes (with zero basis in fact) that really make our family life so hard.

Big hugs Cat, hope you find some support soon.

[Annabel]

In response to Cat’s article – my heart goes out to you and you highlight a very real problem; what do you do if you don't feel OK? Minette’s article aroused such a response because she specifically targeted Downs Syndrome as a profound disability; which by and large it isn’t. My son is 10 and has Downs Syndrome and a lot of other medical complications. Am I happy with my life? Yes, delighted. Do I sometimes have days/weeks where I think – “this is c****”, yes I do – particularly on the 11 occasions that my son’s needed surgery. It’s OK to not feel OK but the pressure to be seen to put on a brave cheerful face can make things infinitely worse.

By and large, despite his problems I genuinely do feel very cheerful these days, but didn’t always and here are a few thoughts on things that have helped:-

1 Me time – once a week on a Saturday morning I lock myself in the bathroom with a good book and a cup of tea and stay there – for ages!

2 More me time – at least twice a year I go away overnight and leave my husband in charge. The first time I did it I thought the entire family would end up in A&E, but they survived quite happily (despite eating 24 packets of crisps!!!)

3 Go out with you husband twice a month – whatever – even if you blow your entire DLA on doing it. I can’t really think of anything else more important. For babysitters try local nurseries who all have staff who would be qualified to look after your daughter.

4 Ask for help. Remember you don’t need to do it all on your own. Talk to your GP about how you feel. Ask a friend if she could mind your daughter for half an hour while you catch up with paperwork (which sounds more important than putting your feet up and having a cup of tea which is what you really want to do). Phone social services and tell them how it is – you should be getting respite.

5 Support groups. On line groups are good as you can offload problems and negative feelings and people respond with practical advice. The DSA have helped me enormously accessing help I either wouldn’t have known about or have had the confidence to push for.

6 Get involved with normal land. Unless a child hates the company of other children they usually thrive with other children – who at 15 months couldn’t care one way or another about disability. It can be very hard to start off with, getting back into it, particularly if your child’s been in hospital. Find a local toddler group and find someone to go with you. It’s good idea to send the friend the week before you go so that they can explain to the rest of the group about your child’s condition without you having to sit there listening. I’ve found people (with the odd notable exception!) totally accepting of my son’s condition and once they’ve got over their initial questions, accept him for what he is.

7 Don’t worry about the future – you don’t know what might happen. Live one day at a time and learn to take pleasure from that day. I deeply regret the time I wasted in the first two years of my son’s life worrying about things that have never happened.

[India Knight]

Cat - there's someone else on here whose daughter has Rett's syndrome - perhaps they could manifest themselves if they're reading this.

I didn't always feel so rosy and positive, no. When Nell was diagnosed I felt catatonic and barely able to speak or function. I memorised all the possible manifestations of her syndrome (140+) and was able to recite them, like some gruesome party trick. I spent entire nights Googling and crying and freaking myself out, especially when I ended up on 'in memoriam' sites. All parents of SN kids have been there.

Four and a half years later, I'd be lying if I said I never worried - there's an embarrassment of stuff to worry about - but the worry seems to have been pushed back to a small part at the back of my brain. It sort of whirrs away in the background, but it rarely impinges on daily life. Everything about Nell makes me happy (except for her new thing of pretending to be a puppy when we're out shopping) and everything she does causes me to practically explode with pride.

She is not the child I breezily assumed I'd have when I first got pregnant. But nor is she the child I thought I'd been landed with during all those long nights of Googling. The idea that Minette Marrin thinks it would have been a kindness to everyone to have terminated the pregnancy strikes me as... obscene. I'm not using the word lightly.

I don't know much about Rett's, but it seems to me to be like DiGeorge in that an individual is unlikely to suffer from all of the possible manifestations (I may be wrong). I hope and pray that your daughter falls into this category and that her issues can be managed, to the point where she seems comfortable and happy. I would just add, don't jump the gun until you have a diagnosis. I for instance was convinced Nell's kidneys would fail - one of the things that can happen and which I kept reading about; also that she'd have scoliosis. Neither turned out to be the case.

You're in touch with Unique, yes? Cliched, agony-auntish thing to say, but talking to other parents in the same boat will help. Best of luck to you and your family.

[Cat]

I'd like to agree with you, India, and with most of the people who have commented. I wish I felt so certain.

I have a 15-month-old daughter who appears to have an assortment of disabilities - no-one has been able to attach a label yet to her condition. All we knew about when she was born was her serious heart defect - which has recently been repaired, successfully. But she has severe developmental delay, and we have been told she may have Rett's syndrome - a condition that makes it unlikely that she will ever walk or talk, and she could be 'profoundly and multiply' disabled.

If she seemed happy and content, I would be happy to have her - but she seems uncomfortable and miserable most of the time. It's grim for her, and grim for all of us - me, her father and her older sister.

Our family is falling apart. Are the interests of a severely disabled child more important than the rest of the family? Day to day, our lives aren't filled with joy and fun - it's just grind, misery and anxiety.

You all sound so rosy and optimistic and positive. Have you always felt that way? Have your children always seemed happy to be alive?

I read these posts and emotionally I agree with them - but in practice our lives are so so tough.

[Richard]

Brilliantly written!
Thank you, India.
You made me laugh inspite of Minette Martins terrible article!

Richard/Switzerland
Father of a boy with DS
parent representative
www.insieme21.ch

[gilly]

thank you India once again for your commonsense and eloquence. may you write forever.

[Kris]

Interesting, I just wrote about this attitude in my daughter Meghan's blog, I have volunteered to head the parent comittee to talk to families who have a pre-natal diagnosis of Down syndrome. I have been reading a lot of articles and I am weary of the attitude of some of these people.

You are of course welcome to read my blog.

http://welovemeghanleigh.blogspot.com/

[Jill]

What about children with autism? This disability is usually not diagnosed until the child is around 3. Should we line them up & gas them after dx, because they're "imperfect"?

It's not the people who have Downs or other disabilities that make our lives difficult it's bloody stupid people like Minette Marrin

[mandy]

Thank you India on behalf of myself and my family and friends whose lives have been enriched since the birth of our beautiful daughter who has DS

[AISLING JENKINS]

Dear oh dear Minette, after some reflection I have now decided that I feel rather sorry for you. Can't imagine what has happened in your life to have resulted in you ending up with such a distorted set of values. Our son has a dual diagnosis of DS/autism. Nearly 6 he still has no VERBAL communication and is still in nappies. Well thats the 'bad' news out of the way - the good news, however, runs to too many pages to post here, but a few highlights include; he is in reception at a lovely local school with his sister, (who by the way continues to adore her 'special little brother' - obviously need to get her checked out as she is clearly covering up the great hardship that she is actually suffering), he has made lots of friends (I know this because people I don't know keep telling me how much their son/daughter like him and want him to come to play), he has just passed his 5 metre swimming badge and is working on his next one, he is learning to read and loves his books. Every morning he wakes up and calls out and when we go to pick him up and take him down for his breakfast he beams the most beautiful smile, wraps his arms around me and giggles. If this is hardship then bring it on. Clearly I am a deluded lunatic and will finally realise how appalling my family life really is. Better go now, need to pick up my tranquillizers/vodka/gun before I face the school run.