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	<title>Hazel McHaffie &#187; abortion</title>
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	<link>http://www.hazelmchaffie.com/blog</link>
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		<title>Congenital defects and moral dilemmas</title>
		<link>http://www.hazelmchaffie.com/blog/2011/04/28/congenital-defects-and-moral-dilemmas/</link>
		<comments>http://www.hazelmchaffie.com/blog/2011/04/28/congenital-defects-and-moral-dilemmas/#comments</comments>
		<pubDate>Thu, 28 Apr 2011 06:38:25 +0000</pubDate>
		<dc:creator>Hazel</dc:creator>
				<category><![CDATA[Uncategorized]]></category>
		<category><![CDATA[abortion]]></category>
		<category><![CDATA[BBC Three]]></category>
		<category><![CDATA[genetic disorders]]></category>
		<category><![CDATA[IVF]]></category>
		<category><![CDATA[Jono Lancaster]]></category>
		<category><![CDATA[moral dilemmas]]></category>
		<category><![CDATA[preimplantation genetic diagnosis]]></category>
		<category><![CDATA[Saving Sebastian]]></category>
		<category><![CDATA[Treacher Collins Syndrome]]></category>

		<guid isPermaLink="false">http://www.hazelmchaffie.com/blog/?p=4117</guid>
		<description><![CDATA[I couldn’t have dreamed up a better precursor for my forthcoming book Saving Sebastian, due out on 1 July. But honestly, I hadn’t so much as whispered in the ear of the BBC. The documentary, So What If My Baby Is Born Like Me?, went out at 9pm on 19 April on BBC Three, but [...]]]></description>
			<content:encoded><![CDATA[<p>I couldn’t have dreamed up a better precursor for my forthcoming book <em><a href="http://www.amazon.co.uk/Saving-Sebastian-Hazel-McHaffie/dp/1906817871">Saving Sebastian</a></em>, due out on 1 July. But honestly, I hadn’t so much as whispered in the ear of the BBC.</p>
<p>The documentary, <em><a href="http://www.bbc.co.uk/iplayer/episode/b010n37y/So_What_If_My_Baby_Is_Born_Like_Me/">So What If My Baby Is Born Like Me?</a></em>, went out at 9pm on 19 April on BBC Three, but the main players were also interviewed on various newsy programmes. The story featured Jono Lancaster, and was both poignant and challenging. Jono has <a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002624/">Treacher Collins</a> syndrome, which essentially involves deformities of the face and ears, but normal intelligence. And Jono’s intelligence certainly shone through, as well as his honesty, courage and thoughtfulness. </p>
<p><a href="http://www.hazelmchaffie.com/blog/2011/04/28/congenital-defects-and-moral-dilemmas/jono-and-laura-2/" rel="attachment wp-att-4123"><img src="http://www.hazelmchaffie.com/blog/wp-content/uploads/2011/04/Jono-and-Laura1-520x292.jpg" alt="Jono and Laura" title="Jono and Laura" width="520" height="292" class="aligncenter size-large wp-image-4123" /></a>The thrust of the programme was whether or not he should father a child naturally with his girlfriend of four years, Laura. They both want children, but Treacher Collins is hereditary, and they run a 50/50 chance of having a baby with the same condition. But no one can predict how severely it would be affected. As well as the distinctive facial irregularities, some children require tracheostomies and tube feeding, some are profoundly deaf, some have cleft lips and palettes. In the course of considering their options, Jono and Laura met a little girl, <a href="http://www.google.co.uk/imgres?imgurl=http://i.digiguide.tv/up/1104/tn-1303243200-796567-SoWhatIf-13027029910.jpg&#038;imgrefurl=http://library.digiguide.tv/lib/programme/So%2BWhat%2BIf%2BMy%2BBaby%2Bis%2BBorn%2BLike%2BMe%253F-796567&#038;usg=__8_ZmTmvUnCepE6Snb-4ZYZIk5m4=&#038;h=150&#038;w=150&#038;sz=24&#038;hl=en&#038;start=22&#038;sig2=ilc-Qq7aiIuHxxxQlQlT1Q&#038;zoom=1&#038;tbnid=8uhfAdKBM_1NlM:&#038;tbnh=120&#038;tbnw=120&#038;ei=ofK3Te-7LtnQ4waopLnrDw&#038;prev=/search%3Fq%3DJono%2BLancaster%26hl%3Den%26safe%3Doff%26sa%3DG%26biw%3D1024%26bih%3D435%26gbv%3D2%26tbm%3Disch0%2C624&#038;itbs=1&#038;iact=rc&#038;dur=478&#038;page=3&#038;ndsp=11&#038;ved=1t:429,r:3,s:22&#038;tx=94&#038;ty=112&#038;biw=1024&#038;bih=435">Maisie</a>, and saw firsthand what such anomalies mean to parents. And to the child.</p>
<p>And Jono knows only too well the reactions anybody with the condition will encounter. He’s even been vilified for daring to have a relationship with a pretty girl! And Laura is indeed very attractive, as you can see. Jono’s own biological parents were so appalled by his appearance that they rejected him from birth. He was taken in at two weeks of age by an amazing woman who’s fostered over twenty children. She admitted that Jono had occupied a very special place in her affections and she’d formally adopted him. Watching them together was a delight. </p>
<p>But before you condemn his natural mother, ask yourself, how would you react to being handed a baby looking so different from your expectations? Or walking down the street with a child whom everyone stares at? Take a look at <a href="http://www.google.co.uk/search?hl=en&#038;q=treacher%20collins%20syndrome&#038;rlz=1B7GGLL_enGB388GB389&#038;um=1&#038;ie=UTF-8&#038;tbm=isch&#038;source=og&#038;sa=N&#038;tab=wi&#038;biw=1024&#038;bih=435">these photos</a> and imagine the scenario; ask yourself the questions, if you dare. I studied dozens of them and I confess I didn&#8217;t like the answers.</p>
<p>However even Jono&#8217;s adopted mum couldn’t help him with the quandary he was in now. As she wisely said, you might<em> think</em> you know what you’d do in these situations, but no one can say for certain what they <em>would</em> do in reality. You <em>can’t</em> know until it happens. </p>
<p>It’s a tribute to her love and acceptance and sound common sense that Jono’s instinctive preference was to adopt. Laura though, wants her own child. In an effort to work though the possibilities, they seek advice and counselling; they visit families who’ve faced some of the same dilemmas. One option they have is to go for<a href="http://www.jtsma.org.uk/info_pgd.html"> IVF with PGD </a>– essentially this involves creating an embryo using their own sperm and eggs, then testing it to see if it carries the defective gene. Jono seems initially to be labouring under the mistaken idea that the faulty gene would simply be removed. When he finds that the whole embryo would be destroyed, he’s morally outraged. For him this is &#8216;an insult&#8217;, ‘disrespectful’ to all people with a deformity or genetic disorder. The fact that he himself wouldn’t exist if this facility had been offered, gives his outrage special emphasis and extra weight.</p>
<p>Listening to this young couple grappling with the dilemma was peculiarly arresting even for battle-hardened me. Something so natural as having a child is for them a major issue with endless questions, doubts and fears attached. <a href="http://www.hazelmchaffie.com/blog/2011/04/28/congenital-defects-and-moral-dilemmas/jono-lancaster-a/" rel="attachment wp-att-4201"><img src="http://www.hazelmchaffie.com/blog/wp-content/uploads/2011/04/Jono-Lancaster-a-300x256.jpg" alt="Jono Lancaster" title="Jono Lancaster" width="300" height="256" class="alignright size-medium wp-image-4201" /></a>Jono’s ‘morally wrong’ argument is a massive stumbling block to progress, but in the end their conclusion is that, <em>for them</em>, it feels right to go for IVF with PGD, to have a child without the defect. &#8216;Morally wrong&#8217; for Jono it might be, says Laura, but even so &#8216;it&#8217;s right&#8217;. &#8216;<em>Definitely</em> right&#8217; for the child, Jono concedes.</p>
<p>The scenario in my novel is different, though many of the issues and questions are similar.  Sebastian is four years old, and he has a rare blood disorder. But he’s stunningly beautiful to look at. His parents are considering having a baby by IVF with PGD to save Sebastian’s life. They too have reservations &#8230; But in this case, I’m not going to tell you the outcome!<br />
`</p>
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		<title>Am I really me?</title>
		<link>http://www.hazelmchaffie.com/blog/2010/04/22/am-i-really-me/</link>
		<comments>http://www.hazelmchaffie.com/blog/2010/04/22/am-i-really-me/#comments</comments>
		<pubDate>Thu, 22 Apr 2010 07:51:37 +0000</pubDate>
		<dc:creator>Hazel</dc:creator>
				<category><![CDATA[Uncategorized]]></category>
		<category><![CDATA[abortion]]></category>
		<category><![CDATA[Alzheimer’s]]></category>
		<category><![CDATA[assisted conception]]></category>
		<category><![CDATA[assisted dying]]></category>
		<category><![CDATA[Big Issue]]></category>
		<category><![CDATA[Daily Telegraph]]></category>
		<category><![CDATA[medical ethics]]></category>
		<category><![CDATA[Private Eye]]></category>
		<category><![CDATA[Writers Bureau Creative Writing Course]]></category>

		<guid isPermaLink="false">http://www.hazelmchaffie.com/blog/?p=644</guid>
		<description><![CDATA[I’ve just had a complete stranger contact me to check: Do I exist? Am I really me? Did I actually win a prize in a writing competition as an advert claimed? Now, I’ve lost count of the number of people who’ve told me they’ve seen this photo (top right) in the said advert – for [...]]]></description>
			<content:encoded><![CDATA[<p>I’ve just had a complete stranger contact me to check: Do I exist? Am I really me? Did I actually win a prize in a writing competition as an advert claimed?<br />
<a href="http://www.hazelmchaffie.com/blog/2010/04/22/am-i-really-me/img_0002_2-3/" rel="attachment wp-att-659"><img src="http://www.hazelmchaffie.com/blog/wp-content/uploads/2010/04/IMG_0002_22.jpg" alt="Big Issue" title="Big Issue" width="225" height="320" class="alignleft size-full wp-image-659" /></a><br />
Now, I’ve lost count of the number of people who’ve told me they’ve seen this photo (top right) in the said advert – for a creative writing course with the Writers Bureau. It’s very small fry as prizes go and I was only runner-up, but the advert’s appeared in a range of different publications: <em>Big Issue</em>, <em>The Daily Telegraph</em> and <em>Private Eye</em> amongst others. And it’s been running for seven months now. Wahey! All free – and unsolicited – publicity for me!</p>
<p>But this is the first time I’ve had my credentials – nay, my very existence – challenged. It transpired this gentleman was wondering about taking a similar course but was suspicious it might all be a money-making scam. He checked me out on Google and there I was: a real live person. And a person who writes to boot.</p>
<p>So, now he wanted to check the authenticity of the prize. And that’s when he contacted me. I could easily reassure him that yes indeed, I’d won a couple of awards with the Bureau.</p>
<p>Back he came. Would I recommend the course? I would. Wholeheartedly. Now, a bona fide sceptic might be thinking, Well, she would say that, wouldn’t she? It’s quid pro quo. They promote her work; she endorses their course. But my recommendation was most sincere. Why? After all, lots of people say creative writing can’t be taught. You’ve either got ‘it’ or you haven’t. The course showed me that</p>
<p>•	<strong>Techniques can be taught</strong><br />
Two of my brothers, who are more practically inclined, think I definitely have a seriously abnormal quirk in my brain because I love words so much. I mean, who on earth would scribble a weekly blog <em>from choice</em>?! Well, the inclination may be innate, but the technique of writing publishable work, turning ideas and drafts into polished and focused articles or books which publishers will accept, even pay you for, is an art that can be honed and refined.</p>
<p>•	<strong>We are not our own best critics</strong><br />
As writers we have no end of baggage cluttering up our discriminatory antennae. There’s all the passion we feel about the subject, the pain of giving birth to that text, the protective instinct of a mother. We need other detached eyes (whoops! well you know what I mean) to see it for what it really is, and help us to identify our faults and relinquish the bits we cherish. And you need to really respect your critic’s skill and judgement to make that kind of sacrifice.</p>
<p>•	<strong>We benefit from knowledgeable and objective criticism</strong><br />
It’s delightful to have friends and your Mum telling you how much they love what you write, but what you really need, if you’re serious about writing, is people who truly understand what good writing looks like. Most if not all the tutors on the course I took are themselves established writers. They know the reality as well as the ideal. They speak with authority. They give advice that’s worth listening to. But they temper their criticism with kindness because they also know the sensitivities and vulnerability of the novice author. </p>
<p>•	<strong>Reading purely for pleasure isn’t the same as reading analytically</strong><br />
Tutors can help to direct the would-be writer to good prose, to analyse what makes it sing, and to apply the principles to their own writing. </p>
<p>•	<strong>Broadening experience of writing is beneficial</strong><br />
I must confess I was slightly begrudging about doing the non-fiction half of the course first. I’d already published nigh-on a hundred articles in prestigious peer-reviewed journals. Surely I didn’t need … What a waste &#8230; OK; I resolved to complete the early assignments as quickly as I could to get them out of the way, and then concentrate on the fiction component. Which showed me how wrong I’d been in my initial resistance. Writing to order – about things I’m no expert in – was a salutary experience and an excellent discipline. It opened my eyes to new experiences, made me observe in a different way. I wrote about events as diverse as attending a craft fair, visiting an exhibition of photography through the ages, going for a meal as if a food critic. And always there was the challenge: could I make words work for me without the underlying drive that had propelled my writing before? Words moreover that someone else would enjoy. And there was no room for half-hearted effort just because this wasn’t of any interest to me. A real live, eagle-eyed someone was poised ready to rip my mediocrity to pieces; how humiliating would that be? No, it was nowhere near the doddle I’d anticipated.</p>
<p>•	<strong>It helps to know one’s own strengths and weaknesses</strong><br />
Over the full course I covered everything from writing a letter to a newspaper through to a play for radio. Getting tasters of so many different kinds of writing not only opened up new avenues of experience, but also helped me see where I definitely didn’t want to go. Or probably shouldn’t attempt to go! I confess I was rather pleased with my play, a murder mystery with haunting subtleties and a nice twist in the tale … maybe … perhaps … I began to see the credits rolling … My tutor soon disillusioned me!</p>
<p>•	<strong>Creative writing courses aren’t like sausage machines</strong><br />
Some cynics dismiss these courses: they churn out clones producing formulaic writing. Not the distance-learning course I took! Far from it. It was always student-focused, individually tailored. The assignments were set, certainly, but I was free to interpret and respond as I saw fit. And my tutor always commented specifically about the work I produced; never forced me into a mould of her making. And her assessments were always fair and focused – on me, my style, my end game. </p>
<p>•	<strong>It helps to have aims and goals </strong><br />
Right from the start she’d wanted to know, what was I looking for from the course? What were my personal aims and ambitions? I did actually have a clear agenda from the outset: I wanted to write a set of novels about medical ethical dilemmas. To make ethics come alive through fiction. This was to be my unique selling point. My tutor understood and respected my need to be different. And she gave me good honest criticism to that end. </p>
<p>•	<strong>Knowing the market is vital</strong><br />
Every assignment had to be written for a particular publication or potential buyer. It took hours: analysing the market, trying to understand what editors and publishers were looking for. At times I found it tedious; I was reluctant to put in the effort. After all I had no intention of writing for food journals of women’s magazines or local papers. No way! I wanted to be a novelist. Again, how wrong I was. That discipline taught me much, and since I’ve published my novels, dealing with important life issues, I have indeed written for several newspapers and a range of magazines, bringing my books (and the issues) to a much wider audience than would otherwise be possible. But now I understand how important it is to do your homework. </p>
<p>•	<strong>Persistence and determination are essential for success</strong><br />
I am constantly amazed that I’ve won any prizes for my writing. I still feel like a raw amateur playing out of my league, in many ways. But the fact that I have serves to underline a sad fact. In today’s climate it’s hard to get published. You need an over-developed persistence gene and a hide like a rhinoceros. I happen to have inherited a stubbornly determined streak that refuses to give up on my ambition. </p>
<p>•	<strong>Having a niche market helps</strong><br />
I also have one unusual advantage. I inhabit a rarefied world; the world of medical ethics – the dilemmas thrown up by modern medicine.<br />
In real life all of us are touched by these issues. Someone we know, or we ourselves, face these challenges. Maybe we develop a life-limiting illness; should we end our life before the agony becomes unbearable? Maybe we find ourselves unable to have children; do we go for sperm donation or surrogate pregnancy? Maybe we’re fertile all right, but we don’t want this unwelcome pregnancy; should we have an abortion? Maybe a loved one develops Alzheimer’s; how far should we go in caring for them?<br />
But the subject of medical ethics is shrouded in esoteric language and obscure arguments. We need a user-friendly means by which ordinary people can be helped to understand the pros and cons of different sides of the arguments by getting inside the skins of people living through these scenarios. There’s a niche for novels that make the issues accessible. </p>
<p>There is a space for me.</p>
<p>Next week I promise a short post to compensate for today’s essay!</p>
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		<title>One click ethics</title>
		<link>http://www.hazelmchaffie.com/blog/2010/02/25/one-click-ethics/</link>
		<comments>http://www.hazelmchaffie.com/blog/2010/02/25/one-click-ethics/#comments</comments>
		<pubDate>Thu, 25 Feb 2010 19:33:22 +0000</pubDate>
		<dc:creator>Hazel</dc:creator>
				<category><![CDATA[Uncategorized]]></category>
		<category><![CDATA[abortion]]></category>
		<category><![CDATA[assisted conception]]></category>
		<category><![CDATA[BBC]]></category>
		<category><![CDATA[ethics programmes]]></category>
		<category><![CDATA[euthanasia]]></category>
		<category><![CDATA[sexual exploitation]]></category>

		<guid isPermaLink="false">http://www.hazelmchaffie.com/blog/?p=512</guid>
		<description><![CDATA[Thanks to my daughter’s vigilance, I’ve just found an amazing website, tailor made for people like me who don&#8217;t get round to noting programmes about ethical issues until it&#8217;s too late, or who forget the ones they&#8217;ve seen. If you share my obsession about ethics you’ll probably know about it already. But just in case [...]]]></description>
			<content:encoded><![CDATA[<p>Thanks to my daughter’s vigilance, I’ve just found an amazing website, tailor made for people like me who don&#8217;t get round to noting programmes about ethical issues until it&#8217;s too late, or who forget the ones they&#8217;ve seen. If you share my obsession about ethics you’ll probably know about it already. But just in case I’m not the very last ostrich out of the sand, I’m going to share this discovery with you. And no, the BBC aren’t paying me a penny!</p>
<p>It’s <a href="http://www.bbc.co.uk/ethics/">http://www.bbc.co.uk/ethics/</a> and it gives information about religion and ethics programmes broadcast by the BBC on TV and radio – past, present and future, so pretty comprehensive. And of course, giving appropriate links. Loads of cross referencing and fascinating diversions. The usual suspects are there – abortion, euthanasia, assisted conception, sexual exploitation &#8230; arguments for and against, recent controversial cases, documentaries, drama, comment. It’s great to have one site that gives easy access to the more obscure references as well as prime-time coverage.</p>
<p>I’m off on my travels again this week, so it’s good to know in advance what’s coming up and to know exactly where I can go with one click to catch up the following week if trains don&#8217;t run to time, or the hotel stages a fire alarm at the wrong moment, or I get so lost in my latest Robert Goddard novel that I lose all track of the hour.   </p>
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