Hazel McHaffie

disabled children

Psychological control

I’ve been spending a fair amount of time on train stations of late, and browsing in the book sections on platforms while I wait … and wait … and wait. This week I was struck by the proportion of books in the top 60 which deal with psychology and crime – not just through fiction (there were several of those), but factual books.
Confessions of a Psychopath by ME Thomas
Stalkers by Rachel Cassidy
Talking with Psychopaths and Savages by Christopher Berry-Dee
Talking with Serial Killers by Christopher Berry-Dee
Unnatural Causes by Dr Richard Shepherd

Hmmm. Is this the current trend, d’you suppose/know?

Weirdly enough, I had a book for the journey on Thursday that takes psychological thriller writing to a whole new level. “A wonderful portrayal of psychological obsession at its creepy best’ as one reviewer puts it. The Girl Before by JP Delaney. Creepy serendipity? or just my mind atuned to the subject?

The setting for The Girl Before is an ultra-minimalist house in South Hendon in London: One Folgate Street. Austere, sterile, disciplined. Serene, calm, beautiful emptiness. A mausoleum of a place. Its award-winning architect and owner, Edward Monkford, insists on a huge number of rules – over 200! – for anyone leasing the property: no flatpack furniture, no cushions or rugs, nothing to be left on the floor at any time, no animals, no handrails, no books! …These rules constitute a restrictive covenant, a legal condition imposed on the property in perpetuity. Potential inhabitants must sign documents, fill in questionnaires, submit to being interviewed, before being selected to move in, and undergo repeated ongoing psychometric measurements grappling with intense ethical dilemmas – we get glimpses of the penetrating questions they’re asked throughout the book. Once in, they must undertake to keep the property completely uncluttered and regimented in line with Edward’s exacting standards. And every tenant so far has been a beautiful red-headed girl with determination and intelligence – facsimiles of Edward’s dead wife. Every one a vulnerable woman who has know grief and loss.

I’m always somewhat fascinated by the concept of the unreliable narrator, but it’s a tricky tactic to adopt in reality. This story follows two of the tenants – Emma and Jane – as they attempt to live up to the expectations of One Folgate Street, as they unravel the tragedies and stories relating to their predecessors. Because, for all its outward perfection, the house’s history is dark and sinister. Three people have died tragically – Edward’s wife and son amongst them. And Edward’s obsessive tendencies spill over into his control of the women sexually as well as mentally. He is looking for a pure relationship, unencumbered by convention, with a sense of simplicity and freedom on both sides. When it’s no longer perfect, each must be ready to move on, without regret.

Well written, cleverly plotted, interesting structure, well researched – and a runaway success. It took the author a decade or so to work out how to write the book, but she has captured something very special. It was well worth the wait.

I don’t pretend to be an expert in obsessive perfectionism, but it rings true. As does Delaney’s description of grief and loss, and the emotions around having a disabled child. Not surprising maybe as the author has herself lost a son, and has another one with a rare medical syndrome.

And the poignancy of this book is enhanced further for me by a report out the very day I finished it, about a five year high in the statistics for deaths relating to domestic violence in the UK. There is something particularly sinister about pathological behaviour behind closed doors. And Delaney has captured the essence of it in The Girl Before.

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Disability and desperation

Remembrance day. I’m writing this in the last fifteen minutes of it. So it’s perhaps right that I’m feeling sombre, reflective. But it’s more than 11.11.09. I’m thinking of unsung heroes from another kind of battle.

I’ve just been watching the programme aired yesterday on BBC 1 about parents of severely disabled children; awed by their courage, profoundly moved by their desolation. Glimpsing something of the harrowing lives they lead. Hearing how close many of them have come to taking desperate measures. Feeling helpless and overwhelmed myself.

And before that I listened to an interview that sent shivers down my spine – literally. It’s a podcast of an interview with a Canadian farmer, Robert Latimer, for whom the burden became simply too great to bear: he killed his 12-year-old daughter. (Sorry, can’t give you a link. The recording was sent to me by a friend who obtained it through Robert Latimer himself. So I’ll tell you about him.)

Tracy Latimer suffered from cerebral palsy, severe seizures and horrendous pain. She was on loads of medication, and had endured several mutilating operations. More were in prospect. But eventually Mr Latimer got to a point where he felt enough was enough. One day, while his family were at church, without discussing his decision with anyone (including his wife), he took Tracy out to the cab of his truck and connected it to the exhaust. He waited for her to die. Then he carried her back into the house, into her bed. When the family returned he said she had died in her sleep.

That was in 1993. It took seven years of legal wrangling before he was eventually sent to jail. He served seven years inside and is now out on parole in a half-way house 1,000 miles away from his wife and other children.

What can I say? My heart bled for that poor man. You could reach out and touch his pain as he stumbled through his responses to questions about his feelings and motives. And yet the consequences for him seem not to have featured in his calculations; it was Tracy’s suffering that was paramount. Oh, and the children’s finer feelings: he couldn’t use one of his guns, he said, because her siblings would be traumatised by the messy scene … and … well … he just couldn’t bring himself to … shoot his own daughter.

OK, obviously we can’t have people going round killing others, but surely, surely, surely, there’s a case here for compassion. Just listening to his flat, understated comments I wanted to wrap him up and put him in a warm soft place.

He seems to have been astonishingly naïve about medicine and the law; I’m not. He isn’t religious, I am. He’s appalled by the bigotry religious people can display; so am I. He’s incredulous about the workings of the legal system; so am I. He just wants a fair trial by jury and the chance for the truth to be heard and understood; so do I.

I wax passionate about cases like this. After all, I did spend the best years of my research life looking into parents’ emotions and experiences and opinions about allowing their babies to die. Is the law here in the UK more compassionate? The BBC programme I’ve just watched reminded me of the cases here where mothers, driven beyond endurance, let down by a deficient system, have been jailed for ending the lives of their children after years of relentless caring. So no, it isn’t always.

And then there’s the case making headlines in the papers this month: 13-month-old Baby RB. Baby RB was born with a rare neuromuscular disorder, (congenital myasthenic syndrome). He’s been in hospital his whole life. Now his case is being debated in the courts and we all know about it. Why? It’s making legal history. The medical team, and his mother, believe his interests are best served by withdrawing the medical support that’s keeping him alive. He’s suffering unbearably, they argue. His father disagreed.

We’ve been there before, you might be thinking. But no. There’s one vital difference in this case: Baby RB is not brain damaged. He can’t breathe independently, so he’s reliant on technology to stay alive, but his brain is unaffected. The parents aren’t at war; they both just want what’s best for their baby. But the case went to court because they perceived ‘what’s best’, what constitutes an acceptable quality of life, in different ways. Heartrending. At a time when they needed each other most, they were pulling against one another.

Normally, with time and careful explanations and demonstrations of clinical realities, parents can be guided by medical teams, and a consensus decision reached. If not, the only recourse is through the courts. Nobody wants this kind of action. And it must take the wisdom of Solomon (of the two-mothers-one-baby-judgement) to decide. It took hearing the weight of medical evidence against his son presented in court, to persuade Mr RB to change his mind this week, and agree that treatment should be withdrawn.

All during this case I found myself swithering, profoundly glad it wasn’t my responsibility. I’m not an advocate of life at any price; an active, discerning mind in a completely unresponsive, pain-wracked body, must be a living hell. But I do believe life is special, and there must be compelling reasons to deem it not worth saving. The balance of burdens over benefits has to be pretty overwhelming.

Remembrance day is officially now over for 2009. But battles are being fought behind closed doors around the clock, 365 days of every year. Let’s not forget.

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