Julia Hollander part 2 (see below first)

I wrote my column about this this week and am reproducing it below. See the web page for more comments.

From The Sunday Times

March 9, 2008

Brave to give up a baby? Never

India Knight

As I was saying last week, becoming a parent can be a scary business. If the child you produce has a disability, “scary” doesn’t begin to cover it. You can add terror, panic, an overwhelming sense of injustice (“why me?”), rage, grief, incomprehension and a sense of bereavement because you mourn the “normal” child you thought you would have even as you get on with everyday life.

This doesn’t make anyone saintly – the perception that parents of disabled children are somehow as “special” as their offspring is an irritating one: you don’t get a personality transplant, nor does the person you have been until the day your child is born somehow vanish overnight to be replaced by a Mother Teresa/Florence Nightingale combo. Parents of disabled children are as normally human as anybody else. We are not saints. But are some of us sinners?

Julia Hollander, 43, an educated, middle-class opera director who describes herself as “a capable, gutsy woman”, found being the parent of a disabled child unbearable. When her daughter Imogen was born brain-damaged four years ago, she could cope with her for only a few months.

Imogen communicated by screaming and, exhausted and overwhelmed, Hollander found herself wishing that her longed-for second daughter would disappear. Imogen’s father, a bearded charmer called Jay Arden, started sleeping in another room and eating meals separately.

Hollander has written: “One night, rocking Immie’s angry little body back and forth, I felt myself swing just a little bit further. This is what it would feel like if I were to smash her head against the wall. It would be so simple: her soft skull would crush like a boiled egg . . . It is too horrible, the ease with which I can imagine destroying my child.”

She felt irritation that Imogen wouldn’t - or more accurately couldn’t - smile at 12 weeks old. Told that Imogen was probably permanently brain-damaged, Hollander stopped breast-feeding her: “I needed not to be needed any more.” When Imogen was three months, her mother told the health visitor: “I feel like I’m looking after an animal.” She asked for help from social services and was told they’d act only if they believed the child to be in danger.

“She is,” Hollander said and she wasn’t wrong: aside from her head-smashing fantasies, Imogen’s father had wondered out loud about suffocating his child with a pillow (“he said he wished she would die a cot death. I said maybe she would. But no, he said, she was strong - that was how she’d managed to survive her terrible birth. If we wanted her to die now, she would need help”).

When the severity of the brain damage was confirmed by a neurologist - “Strictly speaking, she has no intelligence,” the consultant said - Hollander felt unable to continue visiting her daughter in hospital or to collect her when she was allowed home. She and Arden gathered all of Imogen’s things - the cot, the steriliser, the high chair - “and Jay drove them to the dump”. When Elinor, the couple’s other child, came home from school, there was no evidence Imogen had existed (I’m hoping her parents have started a therapy fund for Elinor).

Social services placed Imogen, then five months old, in the care of a foster mother called Tania Beale, then 30 and caring for an older disabled girl. And there Imogen remains. Hollander and Arden are married and have another, healthy daughter; Hollander sees Imogen once a fortnight. Beale is to be made Imogen’s legal guardian.

“Sometimes I think of myself not as Immie’s mother at all. I could simply be the means by which Tania’s child came into the world,” Hollander writes in her new book which gives a bold - some might say off-the-scale shameless - new spin to the misery memoir genre.

Interviewed some years ago, Beale said: “We all have different skills. If parents can’t cope with a child, the most loving thing they can do is make sure the child is cared for by someone who can.”

I cannot get this story out of my head; I’ve dreamt about it. Even though every iota of my being feels intense repulsion towards Imogen’s parents’ actions, as the mother of a disabled child myself, I understand - or try to - how important it is not to sit in judgment. What matters is the child’s welfare and quality of life and Imogen is now loved and cared for.

Hollander was clearly traumatised by Imogen’s arrival; she was also clearly grieving, a common reaction, as is wishing that the child would somehow go away (most people nebulously wish for painless means of achieving this, not for DIY infanticide, but anyway). Of course some people can’t cope: there was the elderly woman last year who killed herself after decades of single-handedly looking after her disabled son, or the father a few years back who admitted to “mercy killing” his. But Hollander gave her baby all of five months.

It behoves nobody to kick people when they’re down; and in my opinion Hollander is a person in pain seeking public atonement by using “honesty” as a bogus and self-deluded way of achieving it. She is promoting her book, making money and garnering idiotically misplaced media sympathy for her “bravery” and “honesty” from people who haven’t a clue what they’re talking about and care more about the “rights” of women to feel joyous at all times than about pathetically vulnerable babies. Hollander has returned to her arty middle-class lifestyle in leafy Oxfordshire with her other “normal”, photogenic children.

That is her choice but to present it as being in any way “brave” is insane. It is selfish and self-serving and monstrous. Bravery is picking yourself up and getting on with it; bravery is the lioness instinct to defend your vulnerable child with your life – and, if needs be, your sanity. Bravery is dumping the loser husband who’s taken to eating separately because he can’t cope. Bravery isn’t pretending that the inconvenient truth never happened.

Tens of thousands of women (and men) go through their lives as parents of disabled children in a heroic way, every day, without bleating and without the benefits of a comfortable home, a book advance and a sympathetic media.

It’s not a fashionable thing to say but motherhood is about sacrifice and duty. It’s about understanding that you will no longer be able to put yourself first and understanding that there isn’t a personality type that “copes” with difficulty or disability better than anyone else.

We’re all muddling through as best we can; our reward is anything from a hug from a “normal” child to the painstaking ghost of a smile from the immobile face of one who is not. Anyone who feels unable to grasp this should get their tubes tied, pronto. And Hollander should give up writing books, stop pretending that everything’s fine and get the help she so clearly needs.

Comments

[Alice]

The parents of seriously disabled children who invest the time, effort and heartache to raise them themselves are clearly wonderful, generous and admirable people. Of course it is every parent's worst nightmare, and there are thousands who in their quiet, uncomplaining way, make monumental sacrifices every day for their disabled children. However, to judge someone who is unable or unwilling to do this, in such a harsh manner, is unfair. If Julia Hollander had embarked on raising her baby with no external help, it would very likely have cost her her family and her life as she knew it. To give up all of that for a baby who is so disabled that she will never, ever, reach a state of awareness of anything (your article says that medically she has zero intelligence) is such a huge thing that it is wrong to condemn someone who says, actually, I can't do this.

Instead of condemning this woman's choices, I feel strongly that we as a society should realise that no-one should have to cope with this alone, and establish a decent welfare system (clearly the present situation is outrageously deficient) so that no woman is faced with such a choice. The families of severly disabled children should be given as much practical support as they want and need: this should be a social right, not something the family has to fight for every step of the way.

Also reading Julia Hollander's response in her blog, it is wrong to suggest as your article does that she has cut Imogen out of her life. She and her other children are in regular contact with Imogen and her foster mother. Imogen is loved and cared for, her birth mother does not have to cope alone, and her siblings are still part of her life.

[Katherine]

I cannot believe these smug, hateful, and inhumane posts from parents of disabled children. You would be outraged if someone criticized your decisions regarding your children the way you are criticizing Ms. Hollander. Not everyone has your capacity to care for such a profoundly disabled child. (Or your martyr complexes.) Ms. Hollander is to be commended for recognizing that she lacked the capacity to care for her child -- and to preserve her child's life by giving her up. She also is to be commended for her courage in discussing her choice. Perhaps her openness will encourage parents of other profoundly disabled children to give them up rather than committing infanticide. If you are all so concerned about the poor infant, why doesn't one of you adopt her?

[Karen]

There's a response to all this on Julia Hollander's blog now:

http://www.motherstory.co.uk/?cat=9

[Lisa Green]

As the mother of a disabled child I also try hard not to judge other people who make a decision like Julia Hollander to give up their child. However, I won't apologise for judging her decision to write a book and describe herself as 'brave'! I find her attitude offensive and ignorant. I agree it can be hugely irritating when people view me as saintly or special because I am a parent of a disabled child, I love my son just like any other mother loves her child, I wasn't aware that having a baby meant you could just give up on it if it wasn't the 'normal' child you had planned for. Yes - sometimes it's really tough - but I love my son unconditionally and I don't remember anyone ever saying being a parent would be easy. I actually feel sorry for Julia Hollander because she sounds delusional to me. I'm sadly not surprised that she has received support for speaking out, it's a sad reflection on our society that some people feel happy to agree that she is brave, these are probably people who want to feel better about themselves for ignoring people with disabilities and trying to pretend they don't exist - how terribly shallow and sad. I also hope for her sake that Julia Hollander doesn't need someone to care for her when she is older and vulnerable.

[Anonymous]

Your article sent shivers up my spine as i reflected on the journey that my loving husband and i have travelled over the last 7 years with our wonderful 10 yr old son who has autism.

There are no words to describe the daily pain watching him struggle with a world that he finds difficult to understand and yet it is his struggle that keeps in perspective our overwhelming need to protect him fiercely and the huge responsibility we feel as his parents to care for him.

We are not saints and have been pushed to the edge of despair by remortgaging our home several times to pay for the best education for him and to keep us, as my promising career as a nurse teacher crumbled.

There are days spent weeping with sheer frustration, worry and tiredness and the desire for a "normal" life (whatever that is). However we have never once lost sight of the fact that we brought our dear son into this world and it is our moral and ethical responsibility to love and cherish him as equally as his 16 year old neurotypical A grade student sister.

How could anyone give up a child in this day and age when the quality of life afforded to us is so much better than days gone by? None of us has the right to judge another person but dear God there are basic rules of the responsibility to love our children unconditionally and like you i cannot get my head around the fact that Julia Hollander can live at ease with her decision to give up her daughter.

There must be more support for parents during the time of diagnosis and thereafter, of that there is no doubt. However when there is a discerning mix of a "disposable type" ethos and the abdication of parental responsibility ever present in today's society, one wonders where this will take the human race for future generations.

[Jill]

Hear hear Jean Jones.

Sam Mcalister is bored with the judgmental clap trap eh?

Well, what about the judgmental clap trap I get every day when I take my autistic son out & people judge us?

There have been many times in many different situations when I have wanted to walk away & let someone else have the hassle of looking after him.

I don't get that break. Many parents of children with disabilities never get that break.

But we carry on. We don't write books about it. We don't abandon our children.

Do I judge Julia? You bet I bloody do. Do I have a right to? Probably no more that all those people out there who judge me every day. But then again, I don't claim to be brave, I haven't abandoned my child, I don't seek unwarranted sympathy & I haven't written a book.

[Anna]

I don't have a child with special needs, but I have been part of a respite care programme which looks after such children for a few days to give the parents a break. Some parents cared heroically for their children; some couldn't cope and finally took Julia's route; many women struggled alone because, alas, many men, unable to cope, just walked away from their families. There was also the case a little while ago of a mother killing her two adult special needs sons, exhausted by years of caring alone. Children with disabilities bring great joy; they also bring stresses to the whole family. One thing I've learned is never judge. Just as some people have greater physical stamina, muscular strength etc. some people have greater emotional stamina and can find the resources within themselves to hang on when others fail. I think Julia was brave - not to give away her child, but to admit her weakness and her failure. She's made herself vulnerable to the judgemental remarks I read here. I can understand these feelings 'I did it, why can't she?' But not everyone has your admirable strength and courage. Pity her for that.

[Frances Swallow]

India, you put it perfectly, I have nothing to add but my agreement. Yes lots of mothers with difficult or damaged babies and unsupportive husbands do feel depressed, exhausted and at the end of their tether but to give the baby 5 months care and even less breast milk beggars belief! How is the foster mother able to cope one asks? Although the Guardian article does say she gets more support than the family did.
Perhaps some bad media feedback might persuade Julia Hollander to give her profits to a charity for brain-damaged children. We live in hope.

[Cece]

Sam McAllister - Julia Hollander didn't 'find a solution' - she dumped her baby. Social workers found a solution, and luckily that solution was the wonderful Tania - Mog's real mother.
Most disabled babies abandoned in this manner would be shunted from one foster home to another, or be put in instutitional care. The good outcome for Mog is nothing to do with Hollander whatsoever. Her decision was to simply not pick her up from hospital. The happy ending was not of her making. And if poor Mog had been passed around, had to stay in hospital for months or put in institutional care, does anyone really think Hollander and her husband, with his baby-murdering fantasies, would have had her back? Hardly. Imogen's cot was already on the dump by then.

[Erica Smith]

No child should be thrown away by their parents as this woman has done. NO child. I'm the main carer for my two disabled children, and yes, it was a hellish struggle to come to terms with the way they were and learn to cope with their needs. But here's the thing. It's a hellish struggle to cope with ANY new baby/small child. My dad said after my son was born that there's only one true expert on a child, and that's the child themselves. He's right. All we can do as parents is to learn their "language" and by doing so, learn to take the best care of them we can, be they disabled or not. I have zero pity for this woman, who has discarded a child, a living breathing human being, for her own convenience and nothing more. Yes, she might have felt desperate, alone, afraid. Been there, done that, worn the T-shirt out. My autistic son is 9 now, my quadriplegic cerebral palsy suffering, wheelchair bound, profoundly deaf, epileptic daughter is 4. And you know what? Every scrap of panic, loneliness, screaming tears where I collapsed on the floor because my legs wouldn't support me, grief, agony and anguish was 100% worth it, and will continue to be so. They are my babies, my family. I'm no heroine or saint, but I am, however, of the firm belief that children are not a disposable fashion accessory that you can shuck off onto someone else if they don't match your ideals. As for brave, it takes sex organs to create a baby, but it takes true guts to be a parent. Shame on her for being too much of a coward.

[Jean Jones]

Sam McAlister - yes, but what we, as parents of disabled children, are saying is that most such parents feel exactly as Ms Hollander did at the beginning. But most of us don't abandon our child as she did, whether because we don't have the option or because we choose not to. That's not to say we don't fantasise about doing it, because I know that I for one did when my son was first diagnosed. But what we, and India, are saying is that most parents of disabled children hang in there and get to the point where we can cope. We have ALL had a hard time with our children. Perhaps some of us actually have found some way to have the disabled child removed from the family setting. But we didn't start out strong, as you seem to assume. You learn by doing it and Ms Hollander didn't give either her child, her family or herself the chance to work out how they were all going to manage. So you'll forgive those of us who have, painfully and with difficulty, done just that, if we don't subscribe to the view that Ms Hollander is somehow braver or righter than the rest of us because of what she is pleased to term her honesty. Nobody WANTS their child to be disabled and nobody, when told they have a child who is not going to be as they expected, is thrilled with the news because they have been itching to practise the saintliness that they've been nurturing since childhood. But most do get on with it instead of abandoning their child in a hospital. I do know how hard it is to imagine how one would personally cope in that situation and to conclude that one would run away as fast as possible in the opposite direction, but I suppose you'll just have to believe me when I say that most parents, shocked and horrified as they are, don't do that even though there are certainly times when they'd like to.

[minnie]

I heard Julia today on radio 5, a gogle search led me here, I dont understand, children do not come with guarantees, even if born healthy, hoorrific illness/accidents can strike, you don't hear of people giving up their child who has lost limbs due to menegitis etc. As a mother i find it hard to comprehend, as a daughter I worry for her remaining children, will they fear being given away? I really hope she isn't making money out of this book, I suspect she is.

[Jonathan Irwin]

Was simply appalled to learn of Ms Hollander via your excellent article of
last Sunday.A quick look at our website shows what can be acheived to help
families who have a severely developmentally delayed baby who means no harm
to anyone but inadvertantly brings enormous pressure to a marriage ,to the
siblings and to the grandparents,aunts,uncles and close friends.My only
sadness is that we are unable to make the little people better.However we
can be sure that the 953 babies that have been under our wing since 1997
have been well loved ,cosy and warm.
with best regards

Jonathan Irwin
Founder and CEO Jack and Jill Children's Foundation
Johnstown Manor,
Johnstown, Naas, Co. Kildare

[sam mcalister]

I'm really bored of this judgmental clap trap. The poor woman obviously had a terrible time. It's clearly lucky that the rest of you have the strength, and moral high ground, to think she's cowardly and judge her husband. I'm glad you're all so smug. I'm also glad that Mrs Hollander managed to find a solution that gave her daughter the support she needed without losing her own mind and jeopardising the other children in the family with a possible maternal breakdown. I, for one, am willing to admit that motherhood is tough and support people who have problems, rather than castigate them.

[hayley bell]

I too read the Guardian article and it stuck in my mind and then read India's column yesterday. I discussed it with my (pre-teen) children who were perplexed and horrified that someone could behave like this. Trying hard not to be too judgmental (not attractive and who knows how things will pan out for anyone - there are all sorts of potential life threatening illnesses, hazards and accidents on the road through childhood - any one of which could result in a child turning out "less than perfect") how can Julia Hollander think what she has done is brave? I also wonder what thought processes can have led to her getting pregnant for the third time, and especially by that piece of work Jay. What would have happened if this third child had some kind of disability? Would she have carried on trying until the right kind of baby was produced? I do wonder what the first thing that comes into her mind is as she wakes each day - maybe that is a hard enough price to pay. I do feel for her other children and I hope they have the right emotional support as they grow up. It does rather sound that the whole of the Hoilander family is screwed up. Hopefully these children will always have Tania in their lives to present a completely different slant on love, commitment and family

[Russell]

I haven't read Julia's book or all of the discourse that has followed it's publication. Has she expressed any thoughts about the possible circumstance that she might be stricken with Alzheimer's disease in 20 to 30 years time, that she may have to rely on her children to tend to her needs, and that her children may have careers they have struggled to establish?

On a slightly divergent tack, does Britain have a Foster Care system for the older disabled?

[Geoffrey]

My sibling was born mentally retarded and was extremely violent when younger. She's now in her mid 40s, lives in a flat on the pension but makes constant demands on my frail parents, in their 70s, and verbally abuses them daily. So I speak from some experience.

Frankly, the most appalling thing this woman did was write a book about it. She should have shut up and hoped as few people as possible found out. But I can't blame her for giving up her child, though she seems a particularly selfish person for not even being able to hold out for a couple of years.

My mother says she would have seriously considered giving up her daughter but my religious father wouldn't hear of it. She got most of the bruises over the years, not him.

[navi]

I have to say, admitting you can't handle it is better than infanticide... but it's not brave, any more than taking care of the child is brave. It's like when parents who have as many children as I do say 'I don't know how you do it.' Um, you're doing it too...

However, the feelings of not being able to cope with it mean you need help, therapy, etc. Not necessarily to give the child away. The previous article, where it sounded like she made up a danger, made it sound not so bad, but reading this, how she abandoned her child at the hospital, is horrible (the States may have a worse child welfare system, but there's a good chance she'd lose her other kids for abandoning one, regardless of disability, depending on where she lived).

My husband once said, "It's me or him" (of our autistic child). I know he knew the answer to that before it escaped his lips. I gave him a moment to calm down, and asked him if he'd remembered to take his medication... Personally, I think its not just the daughters who are in need of therapy...

My son is difficult, but his in-your-face smiles make every minute of it worth it. And often his neurotypical sisters are more difficult... Of course, she doesn't know that, she didn't give her daughter a chance.

We've been quoted the high divorce rate of parents of autistics. I'm inclined to think that has more to do with society than the child...

[Annabel]

India, glad to see you're back! I've just read your piece in the Sunday Times. My second son aged 9 has Downs Syndrome and as I haven’t read Julia’s book, I’m writing in response to your comments. It made me think about the expectation on parents that to be able to look after a disabled child you need to be a perfect, noble, saintly person, which irritates me enormously. Unfortunately, there seems to be a bit of a conspiracy of silence amongst us parents to keep things upbeat, a bit like the way that you never tell a mother about to give birth what it’s really like! It has its bad moments, but the not bad enough to stop most people doing it again. I can see how new parents must find the idea of “required saintlyness” terrifying. Added to that, the modern ideology of a right to a perfect life, and the assumption that a disabled child is going to totally ruin your life, the temptation to run away must be huge. But running away is what she did and no amount of dressing it up by saying “it was hard therefore I must be brave” takes away that turning your back on your child is a selfish and cowardly thing to do.