Hazel McHaffie

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Dignifying death

QuestioningTomorrow the Assisted Dying Bill is back before the House of Commons yet again. I wonder if your views have changed since it was last debated.

It’s an age old question, isn’t it? 500 years before the birth of Christ, Euripides wrote: ‘I hate the men who would prolong their lives / By foods and drinks and charms of magic art / Perverting nature’s course to keep off death / They ought, when they no longer serve the land / To quit this life, and clear the way for youth.’

And here we are, 2600 years later, with an aging population, limited resources and vastly improved medical capability. Globally, the number of over-65s is expected to triple by 2050, with all that that implies. Of course, no politician will ever advocate that those who ‘no longer serve the land’ should choose suicide. But many aged and infirm people would choose death for themselves rather than indignity or slow decline or suffering. I’ve known many such – one just this week. And yet the current law prohibits assisting them towards that end. Is this a safeguard or a shackle?

During the Festival last month I went to a show which dealt with the quandary elderly folk can find themselves in: specifically not wanting to be kept alive, not wanting to be taken into hospital/care, not being listened to. In the drama, by the Jealous Whale Theatre, terminally ill Wendy’s grandson, Edmund, pleads with the authorities to respect her wishes; but the powers that be insist that there are ‘safeguarding’ issues and their hands are tied. In the end Edmund takes matters into his own hands, smothers his gran with a pillow, and then sits quietly waiting for the consequences. Cleverly performed in the intimacy of a ‘Wendy House’, it forced the audience into close proximity with the protagonists and their moral dilemmas. The play resurrected a lot of the old questions for me.

I'll See Myself Out, Thank YouEarlier this year I also read (and reviewed on this blog) ‘I’ll See Myself Out, Thank You Afterwards I went to the internet and looked at videos about people who have made a choice one way or the other. I was staggered by the number available, and had a rather depressing day watching them all, especially the touching scenes of farewell with loved ones. I don’t recommend it!

But I thought I’d give you the links to a selection of them just in case you want to select any to help you think through the arguments for yourself. I apologise for the imbalance; I’d have liked to be even handed, but far more pro assisted death than against seem to commit their views to video.

The last days, hours, minutes of a person’s life before they took the lethal dose, explaining their position and support for assisted suicide.

Cocktail of drugsCraig Ewart

Brittany Maynard

Man with AIDS in Oregon

Michelle Causse

Peter Smedley with Terry Pratchett attending

John Elliott

Susan Griffiths

Dr Donald Lowe

Gloria Taylor

People who wished they’d had this opportunity but hadn’t

Debbie Purdy

Convicted killer in Russia

Relatives grateful that their loved ones did have this chance of escape

Brother of an American

Mothers who wished to or did take the lives of their children.

Mother wanting to end life of two disabled adult children

Mother who did kill daughter

Patients lingering for years and years in an appalling state while everyone felt powerless to release them

Indian nurse sodomised and almost strangled

Several illustrative cases put together

Elderly viewpoints

The lengths friends and family would go to to support the settled wish of a patient

Two friends dying only one of whom was ill

Disabled people opposed to assisted suicide

Man with ALS

Disabled man

Disabled Alison Davis

(PS. Many years ago I was on a special committee with Alison Davies debating whether or not extremely small sick babies should be treated or allowed to die with dignity. We all found it very difficult to argue against Alison because it felt like devaluing her life. She’s still an ardent campaigner and a powerful voice decades later. And I’m still writing about the subject!)

Speaking of age, I want to add my own wee tribute to Her Majesty Queen Elizabeth II who yesterday became our longest ever reigning monarch. Watching this little old lady still performing her role with dignity, grace and an exemplary sense of duty at the age of 89 is both humbling and inspirational. God bless her.

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Forgiveness writ large

I Shall Not HateEvery now and then a book comes along that challenges the reader at a very fundamental level. Izzeldin Abuelaish‘s book, I Shall Not Hate, was that kind of a read for me earlier this year. (Apologies in advance: this will be a longish post to do justice to a powerful story.)

Whatever your preconceptions or affiliations or prejudices, this is certainly not a book for the fainthearted, and the experiences this man recounts make one feel ashamed of ever having complained. You might perhaps remember Dr Abuelaish appearing live on TV reporting the massacre of his family in January 2009. This, and its subsequent reproduction on Youtube, precipitated him into the public eye. But let’s go back to the beginning.

The boy Izzeldin was born and raised in a refugee camp in the Gaza strip. Reading about his shockingly deprived childhood, it’s hard to believe this was less than five decades ago (he was born in 1955), taking place while we enjoyed the normal privileges and freedoms we take for granted in this country.

‘We were everything the word refugee stands for: disenfranchised, dismissed, marginalised, and suffering.’ 

He vividly describes the grinding poverty that drove him to work for a pittance from a tender age to keep his large family in food, wearing cast offs from humanitarian aid bundles, bone weary and constantly hungry. As the eldest male he was also culturally required to shoulder responsibility for his parents and all his siblings.

‘Like most Palestinian children, I didn’t really have a childhood. Until I was ten, my family, which eventually numbered eleven (two parents, six boys – I was the eldest of them – and three girls), lived in one room that measured about ten feet by ten feet.There was no electricity, no running water; there were no toilets in the house. It was dirty. There was no privacy. We ate our meals from a single plate we shared. We had to wait in line to use the communal toilets and wait for water that was delivered by the United Nations. We were only allowed to fill our pots during certain hours of the day. We waited for trolleys to come by with kerosene or wood for us to buy to cook with. We were usually barefoot, flea-bitten, and hungry. We all slept together on a huge mattress that was hoisted up against the wall by day and lowered at night – except for the baby. There was always a newborn, it seemed, who slept in the same basin my mother used to wash the dishes, scrub the kids with a loofah, and clean the house.’

He was accustomed to seeing at firsthand the brutality of war, over and over again; he watched his meagre home being demolished to make a road wide enough for Israeli tanks to drive along; he was himself the subject of humiliating acts of cruelty and discrimination. All around him was hate and revenge. And yet, from an early age, Izzeldin believed in the common humanity of all races, of the potential for good, and the ‘hope for a better tomorrow’. He was, and still is, convinced that the majority of Palestinians and Israelis want to live in peace, to lead decent civilised lives, in safety and harmony. ‘It’s largely the leaders in both camps who continue to fight the unfinished battles of yesterday’, and the minority fanatics who carry out atrocities, who fuel the divisions, perpetuate extremist visions, and polarise opinion outside of the Holy Land.

Furthermore, he sees his own profession as uniquely placed to foster peace. Against all odds, thanks to his own determination, and his indomitable mother, he succeeded in his chosen career of medicine, becoming a recognised expert in obstetrics and gynaecology, infertility treatment, and public health. Race is irrelevant when you’re sick or in need of medical care, he says. He became the first Palestinian doctor to work in an Israeli hospital.

He also believes that if women and girls were accorded equal opportunities for health and education, they ‘could very well lead us to a peaceful coexistence.’ He certainly has reason to be grateful to the women in his own life. Not just his strong mother, but also his wife, left at home with up to eight children during his frequent absences for weeks, months, even a year, while he acquired the qualifications to break the vicious cycles of his inheritance.

The picture he paints of his country is a bleak one. Deprivation continues even to this day and everyone, including professionals like Dr Abuelaish, must endure them in the Gaza Strip. Water and sanitation services are on the verge of collapse; materials to repair the crumbling systems sit on an embargo list; the healthcare system is broken; access to hospitals and expertise outside the Strip is limited and not infrequently prohibited; a public health catastrophe is highly likely. Unemployment is extremely high; 70% live below the poverty line; farming and fishing face impossible restrictions. Exit visas are often denied for no good reason, limiting access to better lives and opportunities. All contributing factors in the escalation of hostilities in this volatile region. ‘It’s so easy to incite the people with the misery they’re in.’

But this book is not principally about the Middle East tensions, it’s one man’s personal crusade against seemingly impossible odds. Because a successful career didn’t render Dr Abuelaish immune to personal suffering. His nephew was deliberately shot in the legs and seriously disabled. Then his wife, Nadia, was diagnosed and died from leukaemia, all within the space of two weeks, leaving their eight children motherless, and Izzeldin a widower at the age of only 53. And then the worst catastrophe of all happened.

The Abuelaish family were desperately trying to regroup after Nadia’s death at the end of 2008, when the Gaza War erupted: an ‘insane assault‘ lasting 23 days. From the Palestinian perspective, Izzeldin calls it a ‘crazy annihilation‘ of the innocents. For those three weeks the family lost their faith in humanity; ‘God and each other’ were all they had left as they clung together waiting for what was to come. Then, on 16 January 2009, just twelve weeks after Nadia’s death, an Israeli tank blasted shells into the girls’ bedroom, blowing three of Izzeldin’s daughters and a niece to pieces. A tragedy so enormous and harrowing that it’s hard to even comprehend it.

Yet this man, their grieving father, has devoted his life to treating people on both sides of the conflict equally, and actively fostering understanding and reconciliation. His steadfast faith (he’s a Muslim), compassion and strength of character are at once humbling and awe-inspiring, and his book is one of the most powerful testaments to humanity triumphing over tragedy I’ve ever read.

‘We all need to understand that there are evil people in every country, every religion, every culture. But there is also the silent camp of people in every country who believe, like I do, that we can bring two communities together by listening to each other’s points of view and concerns. It’s that simple. I know it is; I’ve been doing it for almost all of my adult life. Look at the Middle East, the bruised Holy Land, and its generations of hatred and bloodshed. The way to replace that is with dialogue and understanding.’

The terrible massacre of these innocent girls inspired renewed and widespread calls for revenge but, even in the depths of his devastation, Izzeldin knew that ‘hatred is an illness. It prevents healing and peace’. Besides, no amount of retribution would bring his beloved children back. Instead he writes: ‘This catastrophe … has strengthened my thinking, deepened my belief about how to bridge the divide. I understand down to my bones that violence is futile. It is a waste of time, lives and resources, and has been proven to beget more violence. It does not work. It just perpetuates a vicious circle… To find the light of truth, you have to talk to, listen to, and respect each other.’

And he extends the challenge to us all: ‘… wiling is not enough. We must act. It is well known that all it takes for evil to survive is for good people like you to do nothing.’ (my emphasis).

[You can see an interview with Dr Abuelaish here which challenges him on some of the points in his book.]

 

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Quo Vadis?

Promotion of my most recent novel goes on. The ESRC Genomics Policy and Research Forum arranged a session in Waterstones bookshop on Tuesday this week, where I was in conversation with Dr Shawn Harmon, a lawyer and research fellow at Edinburgh University.

in conversationThe Forum’s Director said: “As life sciences develop, novel medical approaches to treating disease – including the role of so called ‘saviour siblings’ – are becoming increasingly viable. However, these potentially bring with them significant ethical issues, and also raise questions about how we regulate the practitioners applying such technologies.” Indeed. They are keen to facilitate discussion about these issues – just as I am – so they’ve been running a programme of ‘Social Sessions’ allowing the public to debate with writers. My event was the latest in this series.

We used my fictional characters to bring the topic alive, and to my relief, Shawn wasn’t nearly as intimidating as his weighty CV would suggest. Phew! Great venue, lively audience, good wine (strictly for after the event in my case!), and thought-provoking issues. But you’d need to ask the audience for a dispassionate opinion – the person quivering in the author’s chair has a decidedly one-sided perspective. And my reaction is always the same: I can think of a much cleverer and more coherent answer the following day! Somehow in the hot seat the grey cells aren’t quite as lively, nor the tongue as eloquent. Hey ho. There’s a video of the interview posted by the Forum on Youtube if you’re interested.

OK, so Saving Sebastian is safely out there, but whither next? At this precise moment I could do with a fairy godmother to wave a wand and show me the future. Or a clairvoyant to tell me the consequences of decisions at this stage.

Because ‘the world of books is undergoing its most dramatic change since Gutenberg printed his 42-line bible in Mainz in 1455,‘ as Andrew Franklin, founder and managing director of Profile Books, said in his inaugural address as visiting professor at City University. Book prices are falling, physical books sales are diminishing, globalisation and technological change make it increasingly difficult for non-celebrity authors to find a profitable niche. ‘The rich get richer and everyone else suffers.’

Now, money is not my driving force. I want to write; I still have things to say. I’ve now published seven novels with established publishers. So where do I go with novel number 8?

Self-publishing? Franklin’s take on this is: ‘For a tiny number of writers this works, but then for a tiny number of players the lottery works too.‘ Ouch.

Digital books? The Society of Authors has actively encouraged this route. But will it require shameless self-promotion (yuck!) and rock-bottom pricing to become visible in this huge mountain of unregulated publications, where spam, plagiarism and computer-generated books lurk amidst the results of honest toil and careful scholarship? Would my own little offering simply sink without trace?

Open Access? From this safe distance I can sincerely applaud the democratic principle of free-to-the-reader books. But nothing is really free. Who exactly is paying the price for this principle? Would it be me? Or worse, would I be harming other writers struggling to make ends meet whose books are in competition with the free ones? And anyway, is it simply vanity publishing cloaked in a respectable altruistic disguise?

Franklin’s conclusion is double-edged: ‘Sadly, the book world is becoming a free market winner-takes-all world where success is over-rewarded and there is only tough love for the rest. This is a time of change rather than the End of Days. The publishing industry constantly reinvents itself and we are on the cusp of one of those revolutions. On the barricades, some comrades may be lost – authorship as a profitable profession may not be recognisable in its present form of author, computer and desk. After all, the invention of the printing press ended the specialised, highly skilled and utterly beautiful art of manuscript illuminations.’

Question is, would I be one of those conrades lost on the barricades? Which is where my friendly neighbourhood fairy godmother and clairvoyant come in.

 

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