Hazel McHaffie

Edinburgh University

Moral obligation

Every now and then something crops up that challenges my thinking on ethical issues, and I’m reminded all over again that these questions are always evolving and it behoves me to stay on my toes and constantly revisit them.

This week it was a half day seminar on ‘Leaving your brain to science: Engaging with law and ethics’, organised by Edinburgh University. Now, although I’ve been immersed in the subject of organ donation for the last few years, as you know, I hadn’t explored giving the brain specifically, so I was intrigued to know what would emerge. I won’t bore you with the details, but I’d like to share something of the workshop that concluded the day.

It focused on moral obligation. We were given a collection of possible actions which might be of benefit to others and asked to rank them in order. At one end was ‘MORAL OBLIGATION’ which essentially meant the action is of recognised benefit to others with very little risk to oneself, making it something where there is a high level of obligation to carry it out (eg. on finding a fire one should summon the fire brigade). At the other end of the scale was ‘MORAL SUPEREROGATION’, meaning that the action might well be deemed praiseworthy, but it carries risks of such an order that there would be no obligation to do it (eg. rushing into a blazing building to rescue someone); it goes way beyond what might be considered a duty.

Rating moral obligationThe actions to be ranked were:

Live organ donation

Cadaveric organ donation

Egg donation

Sperm donation

Giving samples of tissue for research

Bone marrow donation

Donating the brain for research

Blood donation

How did YOU respond?Why don’t you try it yourself? Weigh up the potential benefits and costs and see where you feel a sense of duty/moral obligation takes YOU. You might well be surprised – as I was – at where ‘giving your brain after death‘ comes.

 

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Strength in collaboration

Well, our lovely city has turned into bedlam once more as the festivals get into full swing. Stalls, tourists, artistes, craziness, noise, performances, wherever you turn.Festival cityBut I’m conscious that I view the events differently now that I write fiction. Which reminds me … writing a guest blog this week for Sparkle and Dark Theatre Company I was quite shocked to realise that I’ve been a novelist for almost twenty years now. Of course, for over half that time I was also working full time at the University as a researcher, but still … twenty years! Hard to believe.

A lot’s happened in those decades. Not least an increase in the number of people working to illuminate science through the arts, compared with when I first saw a niche for myself in this role. So I was delighted to be invited to participate in a couple of events designed to bring together artists and scientists. This collaboration has been inspired by Sparkle and Dark’s new play, ‘Killing Roger‘, which raises contemporary bioethical issues, and is being performed during the Festival Fringe (and yes, of course I’ll be there –  next Monday actually. With bells on!). Sparkle and Dark have got together with The Mason Institute at Edinburgh University, with funding from the Wellcome Trust, to host these additional events. Hats off to them.

The first is a debate on assisted dying, the subject of ‘Killing Roger’. Ahah! Ears pricked. As you know, one of my novels is about this very issue, and I’ve maintained a keen interest in developments since. A panel of experts will lead the discussion and there should be lively exchanges, probably a smidgeon of dispute too. I have my own solution to the current legal impasse – question is: will I have the courage and opportunity to present it?

The second event is a symposium to discuss the place of the arts within policy and practice, and how to enhance collaboration between artists and scientists. I’m being wheeled out as a scientist-turned-artist, I think, someone who combines and embodies both. We shall see. There’s a wine reception afterwards so I’ll be able to fortify myself if anyone heckles my credentials!

But the main objective of both events is to establish a network of interested parties in this area of arts and biomedical ethics which is absolutely my bag. As Henry Ford once said: Coming together is a beginning; keeping together is progress; working together is success.

So what with this, and various relevant performances in the assorted festivals to attend, and of course, THE Book Festival – here’s the famous tented village well under construction this week …BookfestfBook Festival venue under construction… August is promising to be a terrifically exciting month. Edinburgh is certainly the place to be.

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A plague on platitudes!

Crucial Decisions at the Beginning of LifeIn my former life as a researcher at Edinburgh University, before I became a novelist, I spent a number of years with bereaved parents. Now, I don’t know about you, but I can’t think of anything much more harrowing than watching your child die.

And yet I heard first hand from these grieving men and women that a large number of their relatives, friends and acquaintances churned out platitudes like: ‘He was only a baby, you didn’t really know him’, ‘At least you can have another one’, ‘You’ve still got John and Polly.’ In effect saying: You have no right to grieve. It’s no big deal.

Those parents changed me forever. I’ve never quite regained my tolerance for those who make heavy weather of trivial burdens and moan about their lot.

A similar (though far less damaging) experience is coming my way at the moment. I’m being told to count my blessings in one form or another, or I’m being told what I must be feeling. I have visions of carrying a placard:
I KNOW she’s at peace; I KNOW she lived a full life; but SHE WAS MY MUM. I really, really, really don’t need you to diminish my loss.

I felt the iniquity of these kind of platitudes acutely some years ago when I was inside the skin of one of my characters, Adam O’Neill. He’s a young journalist, Right to Dieat the peak of his potential when he develops Motor Neurone Disease in Right to Die. He’s facing an early death. He’s fully aware that though his body will disintegrate inexorably, his mind will still be functioning normally, totally conscious of the gathering horror. Imagine that kind of living death … if you dare.

I’m going to reproduce his reflections on how people reacted to him in full, because he sums up the iniquity of denying someone else in dire trouble the right to feel lousy and sad and angry.

While other people are writing Christmas lists, I’ve started to compile a glossary of things people say alongside my private responses. Outwardly, I’m afraid, I’m still locked into the hypocrisy of polite social exchanges.

‘You can still lead a full life.’
Being in a wheelchair, struggling for breath, may seem full to you, pal, but I’ve known better and by my yardstick it stinks.

‘Your attitude will make all the difference.’
Why do people put the onus on me? If I deteriorate quickly, will that be a comment on my approach to life? If it’s legitimate for you to be fed up with trivia, why can’t I be frustrated by this major disaster?

‘Try not to worry about the future, we none of us know what it holds anyway.’
Maybe, but I know pretty much what mine looks like; you can still believe that on the law of averages you’ll have a reasonable lifespan and kids and a career and a pension.

‘Enjoy today. Think positively about what you can do, not what you can’t do.’
I’d like the feel of that if I said it myself; I hate it when other people in perfect health slug it to me.

‘Channel your energy into creating the best quality of life you can.’
Ditto.

‘It’s a good thing you don’t have kids.’
Now that is below the belt. I’d give a king’s ransom to have the assurance that something of me lived on after my death.

‘At least Naomi’s still young enough to start again.’
Start what? D’you think I haven’t recognised the fact that she’s young and attractive and desirable and ready for the next stage in her hormonal life? Do you have to tell me she’ll probably have kids with some other bloke? Do you?! Damn it, I want her to be happy with me! Have kids with me!

‘Live positively with MND.’
That’s one of the most patronising comments to date. It conjures up those Pollyannas who are paralysed from the neck down, or whose families are wiped out by a senseless act of terrorism, who go on record as saying they’re a better person for having tribulations in their lives. Ergo, they’re glad they’ve had these things happen to them. Give me a break! Goodness thrust upon you can’t be the same value as goodness you chose to cultivate, can it?

‘I see you’ve kept your sense of humour – that makes all the difference.’
I’m sure it helps you, but remember it costs me. Just because I’m poking fun at my own inebriated gait or my drunken slurring doesn’t mean I’m laughing on the inside. Sometimes it’s just a cover to defend myself from pity, or ridicule, or too much sympathy. Or it’s because if I don’t laugh I’ll slip below the surface and in all likelihood never come up for air again.

On a good day I can tell myself most of these things but if there’s one piece of advice I’d give to everybody about dealing with folk in trouble, it’s this: Never ever count their blessings for them, or exhort them to count them themselves. Contrarily I know if someone else commiserates with my plight, my instinctive response is along the lines of: Things could be a lot worse; and to focus on what I can do. But that’s my prerogative, no one else’s.

I leave the last word on the subject with him.

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