‘Trapped: My Life with Cerebral Palsy’

February 15, 2018

A thousand blog posts

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A thousand blog posts?

I think I must have written, by now, almost a thousand blog posts. (I had more than are currently listed at https://www.franmacilvey.com because I had to delete some posts from my original WordPress site, they having only a very tenuous connection with the categories that I set up for my current blog.)

At three hundred words for each blog posts, that is – yes, I know, but arithmetic has never been my strongest suit, quite honestly – three hundred thousand words, more than enough for three books. Wow. That feels good, and I begin to appreciate the value of all those backups, having wonderful web support and help with SEO and all that jazz. It has been an interesting journey to get this far.

I started out as a tad bewildered author, uncertain of all this on-line media networking jive, and over the years, my hope and optimism trajectories have had more lifts and dips in them than a five star hotel, but now… now I come out of it all, feeling more ready, willing and prepared for what the rest of the year brings: the London Book Fair in April, the Frankfurt Bookfair in October – and I’m not concerned, as some industry insiders would have it, that Frankfurt is only for industry insiders. So what? Writing is a lonely enough occupation without the added isolation imposed by barriers that reek of exclusivity. We take our chances where we can find them.

I’m pleased, in all this time – more than ten years of writing, networking and hoping – to have had the support and encouragement of so many others, writers, readers, industry professionals and neighbours. Thank you so much, for all your encouragement. Without that, my writing career would still be an embryonic hope, stifled by regret and what ifs. Even if my path were to end today, I would feel grateful for the last eleven years of endeavour, experimentation, trial and error.

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February 13, 2018

A wasted opportunity

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A wasted opportunity.

We’ve been hearing a lot about the behaviour of certain people in the public eye, all of whom will remain nameless because I don’t wish to cast particular nasturtiums in anyone’s direction. Doing so tends to obscure any meaningful debate with lots of muddy water.

I rarely listen to BBC radio 2 at lunchtime, because so often, they throw deliberately contentious issues open for discussion, which seems to routinely end in bouts of heated argument. I don’t particularly favour that approach to debate, because, I feel that if you wish to persuade someone to a different point of view, it is more useful to listen well and talk quietly.

But a particular type of person seems to defend what I would consider to be obnoxious behaviour in the public sphere, with the argument that goes, ‘This was merely a typical, ordinary response of an ordinary bloke/ess down the pub, who was probably having a chat with his/her mates on a Friday night….’ and therefore his or her forced resignation, departure from public office, is out of all proportion to the perceived offence, tweet, post on FB, etc, which seems to have caused so much upset among the general populace, and the unreasonable leftist press in particular.

Yes, perhaps a single, offensive tweet is excusable, and perhaps it is the result of a bit too much bevy. Perhaps, from the point of view of an educated, middle class, white male who has – let’s face it – been part of the system that he and his ilk have fashioned and benefited from for eons, one remark should of course be excusable. But…

I have been accused of being unreasonable – a long time ago – when I have responded angrily to a single, jocular comment, of course meant in fun, but which I have found deeply upsetting. Probably because one single jocular comment from one person is probably the latest of about three thousand irritations that have accumulated over the course of several years, one more pebble of discomfort to add to the collection in my shoes…

That I no longer rise to offensive comments is not intended to suggest that offensive people may, each in their own way, contribute their pennyworth of offensiveness to the general discourse and expect to be excused. Racism, sexism, disable-ism, double standards and unkindness deserve to be called for what they are, and kindness, toleration and peace are always worth encouraging.

Try telling the single mum with three kids living on benefits that a ‘scrounger’ comment from a local official was only meant in fun. Try telling a bulky young man that comments about his size are only banter. Try telling a woman who has been for seventeen job interviews that her position is laughable. To those who have to battle the system every day, every gesture of kindness is appreciated. And every joke at someone’s expense is a wasted opportunity to be kind instead.

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February 5, 2018

Non invasive prenatal testing

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Non invasive prenatal testing

I was listening to BBC Radio 4’s ‘From Our Own Correspondent” which contained a very interesting report on a synod being hosted by the Church of England on the subject of non invasive prenatal testing and Downs. The report was candid and raised some interesting questions, some of the ramifications of which just seem to roll out like a ball of string in my mind.

To summarise, certain countries – I think Iceland and Denmark got a mention – use a form of non-invasive testing to screen for genetic abnormalities in foetuses, testing which is so prevalent that, in Iceland now, no children are born with Downs. It has been postulated that with wider use of such non invasive testing, genetic traits such as Downs might be screened out altogether from a population. What are the ethical ramifications?

Traditionally, testing for prenatal genetic abnormalities has often been invasive: the scary amniocentesis test carries its own risk of subsequent abortion, which tends to mean that mothers who have the amnio test are strongly advised to proceed with an abortion if test results indicate a tested-for anomaly.

Now, with the widespread use of non-invasive tests, the risk to the mother is nil, and so the pressure whether or not to proceed with a termination in the event of a positive test for a genetic anomaly becomes almost purely social. Non- invasive tests are great – and will doubtless be touted as a big step forward for the free mother lobby – but I doubt that freedom itself is so straightforward.

The risks shift the nature of maternal choice further from the medical sphere and plant it more firmly in the social sphere. I suspect that ‘freedom’ will move from the rights of the mother not to put herself at medical risk, to the right of the mother to do what is socially expected of her.

And, does it benefit society at large that all individuals should be the same? I personally am concerned that, because of the nature of medical advances, individuals of difference will, increasingly be tolerated only within social spheres that take a moral or political stance: Churches, or societies that embrace the totality of the human condition will probably be in a minority, although the gifts that individuals bring to such communities is immeasurable. And mothers will have to have the strength of Job to resist.

To be continued.

Thanks for reading

 

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February 2, 2018

Lessons learned from writing

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Lessons learned from writing

My first book, ‘Trapped’

is my first baby, with which I am well pleased, and which shares more hopeful lessons learned from decades of misery. It was a very challenging work to produce – and it very nearly didn’t get written; it would have been so easy to simply turn my head away from the challenge and say, ‘Can’t be bothered’ – but I did pick up the gauntlet that was left lying there, and learned a great deal in the process. I’ve often said, if one other person has also been helped, that has made the whole ordeal worthwhile.

But in some ways, ‘Trapped’ is only a first step. It represents a coming to terms with things, a decision to put away yearning, and start living; a resolution to put an end to simply existing and start moving forward, creating things more consciously. Its narrative ends at the point where coming to terms – what do they call it, a coming of age? – has been reached. But having come to terms, we then need to move forward – and fast, if we have spent so many years simply dawdling on the side-lines. There is living to catch up on.

Which is where my second book comes in. In ‘Happiness Matters’

I had ten years to refine the lessons which remind me, over and over again, that I can only hope to be helpful to others if I can find it in myself to be happy first.

I can’t hope to find any of the answers, or any emotional or spiritual sustenance, unless I learn first, to do, and say, and be, what I would like. Which is not an invitation to a life of hedonistic indulgence; I would soon get bored with that. But it does recognise that the only things worth doing are those that come from sincerity, joy and contentment. So happiness within ourselves is not the outcome, as much as the spring-board that gives life to our most relevant, worthwhile actions. I’m glad to remember that, again, today.

Thanks for reading, and for all your support.

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January 26, 2018

Time and tide wait for no woman

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Time and tide wait for no woman

Time and tide wait for no woman…. Just occasionally – Not at all often, I am pleased to note – I encounter comments about my book, ‘Trapped’ along the lines of ‘miserable book, miserable git’ or words to that effect.  Not that I mind – different strokes for different folks; and these days I’m more likely to smile at that, than get upset.

‘Trapped’ took me four years or so to write, and was first published in hardback in 2014.  In the intervening period my hopes, attitudes and beliefs have undergone several revolutions.  I guess I’m hardly an impartial witness, though readers can also scan my web content to find my second book, ‘Happiness Matters’ a modest tome about how to be happy.  So I can’t be that much of a miserable git these days.  The test would be whether such comments as these reduce me to an indignant, grumbling mess.  They don’t.

What we are, who we are and what we think about what matters in life, are facets that are constantly evolving.  There is not much I would wish to alter about my books, or my writing, but all things change, and writing ‘Trapped’, my sincere attempt to reflect on my first forty years of life, changed me, and changed my attitudes to life in general, and my life in particular.  I learned a lot from the process, mostly, about the importance of doing our best, and of being as happy as possible more of the time.  Valuable lessons that have empowered me to move forward.  I can’t say I would write or do anything else differently, or speculate how my life might have turned out if I had opted to become a visual artist, say, or stayed on working as a solicitor.

The publishing industry calls memoir, ‘narrative non-fiction’ which is a very polite way of saying that the content is largely true, but reads like a novel and will probably contain some plot holes and a few examples of poetic license.  But after ten years, the truths that held true when we first wrote THE END to finish our memoir, have probably changed, as will the authors themselves.

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January 21, 2018

Reading while writing

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Reading while writing

 

Few pastimes give me greater pleasure, these days, than leaving wonderful reviews for books that I have discovered that are – wonderful. Well written, funny, intriguing, satisfying, well plotted, thoughtful… we have a hundred adjectives to describe why we like books. I have a few reads and reviews to catch up on.

So I guess I do read while writing, but not always, and definitely not at the same time – even with my super-light e reader, I don’t have enough fingers. Perhaps it also depends somewhat on what genre I’m writing in.

Narrative non-fiction is challenging on so many levels – make it read like fiction, but true, up to a point of view, and don’t tread on anyone’s toes – that I recall long periods of not reading while I was writing Trapped. I was too caught up in my parallel world to continuously make the transition to other parallel worlds, so I kept those others at bay for a while. There was also a lot of emotional stuff to process, so it would have been hard to read anything except books that could matter in the same way – and I didn’t need any more of that.

But while writing Happiness Matters

 

I certainly did read other books, for the change of scene, for light relief and for a pool of ideas to help me refine the text of what I was writing. In any case, my writing rate is relatively slow: I might write two books over the course of three years, and not in strictly chronological order, either, so reading has been vital to keep my impetus going, and to give me space to reflect and escapist time off.

Writing fiction is another whole pond to swim about it, and, on the whole, I enjoy reading books – at bed-time, first thing in the morning – that help me to compare my work. I used to find this very hard to do. Comparisons were never far away, and my insecurities would run riot; but these days, I simply rejoice to find a new author, or a new book that I can enjoy.

Thanks for reading!

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January 10, 2018

Dissing Ability

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Dissing Ability

Warning: This post is contentious and may trigger uncomfortable feelings.

In my experience, one of the first things people with disabilities talk about is – their disabilities. It’s as if not only the world at large, but we too, think first and foremost about our burdens, our blindness, our CP, our deafness, our otherness. I know I have been guilty of this. For years, as I wrote in a lead letter to ‘The Herald’  ‘…my disability became the only thing I identified about myself for decades, and a heavy burden to carry…’

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But, because I now see that as dissing ability, I no longer identify with my impairment – I refuse to talk about what I can’t do, and mention that only in the most cursory terms; the letter references a period when I was in mainstream employment between 1990 and 2003 –  and I notice when people with impairments mention them, and use their impairments to explain why they have no work, no ambition, no hope.

Is this social conditioning? Perverse pride? The problem is, that when we do talk about our impairments, we don’t seem especially proud. We don’t sit up straighter and beam encouragement, but avoid eye contact and shuffle a bit uncomfortably, cry or grow indignant and angry. As anyone would who is forced to talk about what they can’t do!

The disability mainstream appears (from one who is admittedly rather outside the debate on this matter) to be hampered by its insistence on degrees of disability / suffering / loss. ‘I’m more disabled than you’ implies a wheelchair user to an ambulant cerebral palsied person. A double-amputee trumps a deaf person… It is such a pity that those of us with impairments still seem to play the game of compare and contrast with each other, and to find some comfort in a kind of system of consolatory comparison. We all do this, to a greater or lesser degree. And it would be great if we could stop.

Comparisons are odious. Instead of identifying ourselves according to what we can’t do – a lamentable impossibility which, btw, government enforcers also need to take a serious look at – we should focus on our common ambitions, our friendships and how we can draw together. We are doing so, more than ever. Having leaped past that  thorny introduction, ‘what’s wrong with you?’ many of us do draw support from each other. Yet despite all our good intentions, rather than learning to focus on our positive qualities – are you a great kisser with a sense of humour? – we still define ourselves by what we can’t do, and allow ourselves to be characterised with heroic language: a great tryer, really inspirational, an amazing person, wow, how fantastic….

Despite the media’s attempts to dress things up, I am heartened from watching “Employable Me” to notice that, by and large, employers, interviewers or members of the public seem a fair-minded and compassionate lot, well able to look past the old and tired narratives of ‘I can’t’ that characterise so many adults’ search for employment. Often, interviewers prompt the candidates to take a fresh look at what they do well and to leave behind the limiting beliefs and assumptions that have so far stopped them being successful.

Thanks for reading.

 

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January 8, 2018

Britain’s most extraordinary job seekers

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Britain’s Most Extraordinary Job Seekers

That’s not my line, it’s a quote from the BBC series, ‘Employable Me’, a quote with which I take issue.

What is extraordinary about job seekers with impairments is not that we are exceptionally heroic, though attempts to find jobs and field the disappointment of literally thousands of job rejections contain incredibly valuable lessons about the inflexibility and inhumanity of the current mainstream system of looking for work.

Adults with impairments do not often appreciate, either, having to field the mainstream of sentimental hogwash that we are somehow different from the rest of the world’s population in our aspirations. All of us want homes, enough to eat, meaningful friendships and meaningful work.

The whole point of this series, in many ways, is that although disabled applicants bring a special perspective to many tasks that the rest of us take for granted, we do not want to be cast as, or become, especially long-suffering. Yet applicants with impairments looking for jobs are so often hindered by a self-image that is clouded by our own perceptions as, first and foremost, candidates with disability. Yes, that impairment brings a special and valuable gift to any workplace, but all the other great stuff seems to be forced to take second place to the heaviness of impairment.

One really eye-opening aspect of ‘Employable Me’ is that, when interviewers and employers intervene to remind the candidates that they have talents, that they would do themselves a favour by dressing more formally, by watching what they say about themselves, by having real, public faith in their ability, then they start to see themselves more positively. The programme makes the valuable point that when we focus on what we enjoy and what we contribute to the world, our employment prospects improve massively. Employers only want to see our sunny, optimistic, professional selves. All else is secondary.

We can be disabled and proud. We can also choose to overlook our disabilities and focus on our other parts, in the hope that our friends, family, acquaintances and employers will see our talents, and treat us as we wish to be treated – like everyone else.

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January 4, 2018

Watching Employable Me

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Watching Employable Me

I admit to a moment’s trepidation when deciding to watch the latest series of this programme. (And I’m not sure I appreciate the BBC’s tag line, ‘Britain’s most extraordinary job seekers’  but more about that later.)

I found it, though, really enjoyable and refreshing, and not in ways I expected it to. I was dreading feeling the same dead and depressing feelings that I felt while I was working – and looking for work. And it occurs to me – so late in the day! – that since I was so very unhappy for most of my legal career, the obvious answer would have been to go and do something else! Yet so many of us in work are unhappy, or have periods of deep frustration. These are burdens we each have to work through. I did eventually leave my conventional office job, and I could not go back to that now, but the obvious point is, if a thing makes us feel suicidal, we should step away from it.

I like the format of this series, though I couldn’t help wishing, just occasionally, that the mentors who had been employed to motivate our candidates were not all able bodied, swish and slim. Surely the most inspiring message would come from a fully and happily employed person with impairments? Never mind. Perhaps that is a teething problem and the BBC will employ me to inspire others… Dream on, Fran.

Watching this programme, one statement, ‘There is a difference being born with a disability because you don’t know any better…but having 21 years of being able to walk and then having that taken away from you is horrible…’ rather stuck in my craw. Though I wouldn’t say it upset me, there was a time when I would have thrown something at the telly, and regrettably, it is the kind of rather careless disability elitism that dogs the disability movement. More of which later.

It is simply false that persons with birth-related impairments can’t know what we haven’t had. I did, and I do, and it still upsets me occasionally. I will always hate country dancing. And love it.

Thanks for reading.

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December 15, 2017

How to write a synopsis

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How to write a synopsis

I know, I’ve done all the technical stuff about submissions packages before, and in truth, I have written previously one successful synopsis, – which took about a year to get right, and only after having read lots about how to write a synopsis – which helped me to obtain the services of my agent, and led to my publishing contract. As I propose to publish my next book myself, next year, who knows whether my next synopses, for my fiction series, will ever be useful?

But meantime, I think I have discovered a secret of success with this subject that seems to strike fear in the heart of all writers. So if, like me, you have tended to shy away from the word ‘synopsis’, if the very idea makes you quake in your shoes, these tips for a quick fix might help…

~ Write a synopsis without thinking about the technical stuff, as if you are writing a really exciting letter to your best friend about your new book. What excites you about it? How will you communicate that excitement?

~ Forget your audience or intended target readership. In my experience, thinking about submissions readers or editors before we’ve even finished our synopsis, is a bit like frightening oneself with images of ghosts. Forget the future and enjoy the thrill of writing a condensed version of your novel plot.

~ Be happy while writing, and whimsical humour will come out to help you. Or good ideas, or a nifty sentence you can quote from somewhere in your novel to add flavour.

I guess it comes down to the same thing every time, whatever we are doing. If we are enjoying it, that’s going to reap dividends, and if not, why are we doing it?

 

  • It’s also very helpful to leave a draft synopsis for a while, and come back to it after a break. It’s amazing how a change of scene and time to reflect can bring fresh perspectives.

 

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