August 19, 2019

I am over fifty

Fran Macilvey, Happiness Matters 0 Comments

I am over fifty so… it’s all but over for me, is it?

Everywhere I look, in my daily newspaper, in magazines, leaflets and booklets that tumble through my letterbox, on bus adverts and these annoyingly persistent on-line ads that announce, “Over fifties’ health plan / life insurance / home equity release scheme/ travel insurance / no medicals/ Tenfor Ladies Always Discreet pads for the active “mature” lady”… I am reminded that I had better think of slowing down. I am over fifty so…?

Honest to God, perhaps I should just give up and accept that I’m old. But I don’t feel old, and in more ways than I can enumerate I feel younger, more able, more positive and more alive than I did when my age was thirty-something. I’m not just saying that, either. I have a much better grasp of what my life is for, what I can do to feel more excited, more interested and more alive. And, I would like to be allowed to do that without being dogged by the constant, promoted assumption that because I am – ta da! – over fifty, I somehow need to slow down, take it easy, ease up a bit.

I resolutely refuse to slow down, even though, in many ways, I have slowed down. I no longer pelt along the street and slam into the pavements when I fall because I’m moving so fast. Instead, I saunter, and trip and fall in a more graceful pile but, I don’t seem to notice, even with my reduced speed and my care with each step, that I am much slower than I was before.

And what is this obsession with speed, anyway? I notice it at the leisure centre, where people in the fast lane of the pool seem to swim with an almost permanent grimace on their faces. If I was watching them, I would say they hate swimming and want to get it over with as soon as possible. Do I feel like that, always counting lengths and desperate to get to twenty so I can get out and leave? Actually, yes, I had to admit, I do, often. Which is stupid.

Being aware of something we dislike is the first step to stopping it. I dislike this notion that the over fifties are on the verge of obsolescence, decayed, faded and tired. What about kind and patient? What about character-filled and interesting? Are all such qualities to be brushed aside because we walk with a stagger or a stoop, and because we insist on writing, “The man with whom I was talking” instead of “The man that I was talking to”?  

Thanks for listening.

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August 14, 2019

I got the date for my PIP assessment

'Trapped: My Life with Cerebral Palsy', cerebral palsy, Fran Macilvey, Fran's School of Hard Knocks 4 Comments

I got the date for my PIP assessment.

I got the date for my PIP assessment, today Wednesday the 14th of August.

If this had kicked off last year, I would have said, “That’s my Summer holiday thoroughly ruined”, but there is some stubborn-ness in me that refuses to give anyone that satisfaction. Just because I have to do this now, when we are supposed to be outside and tanning ourselves, having barbeques and swimming in the lake, does not mean I will descend into a worry fest. Why should I? I plan to have a great life, and that includes now, because what else matters, really, in the final analysis?

There is a great deal said these days about those who feel hard done by. And yes, for swathes of our poor, vulnerable and lonely citizens the system is really not working very well, it is stretched to breaking, and broken, in many places, badly patched. For many, many people the daily grind goes no-where near addressing their basic needs; and, since destitution is not something I shall have to face any time soon, I’m grateful, and intend to make the most of all my chances, today, tomorrow and every day.

But… – why is there always a but? – the rules in this particular system appear to be arbitrary, made up with no end in view except to further curtail the ability of those with mixed abilities, to participate. There is no real logic behind the “twenty metre rule” or the broad definition of “to mobilize”. I am informed by ATOS that someone is coming to my apartment today to see “how my disability affects me” – but really, that’s not it. They are coming to see how far I fall within parameters that they work to, and whether they think I am justified in getting additional help with my needs: all surprisingly subjective.

And that is particularly hard to explain when I find it hard to understand, when I am prone to saying, “I’m fine thanks!” even when I’m in a lot of pain and covered in mud; and when it pains me – with an almost physical ache – to enumerate the ways in which I find it difficult to do what I want to do. The gap between what I aspire to, and what I can reasonably manage is increasingly obvious, and makes me, on my bad days, want to – to end – this crux of compromising.

None of which is self pity. But there are shards of despair in there that I dare not look at too closely.

Thanks for reading.

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August 11, 2019

Points of departure

'Trapped: My Life with Cerebral Palsy', Fran's School of Hard Knocks, Memoir 3 Comments

Points of departure

Following my previous post, I have also cause to reflect, again, that a memoir cannot cover every aspect of a life. Not only would our attempt to cover “everything” make of a memoir an encyclopaedia, but naturally, the scrutiny of a memoir covers certain periods, and stops at certain natural points. Beyond these points of departure, our lives can change, and flourish beyond recognition.

In my memoir, for example, I reflect on every young girl’s dreams of being included, being loved, part of a carefree community of those who enjoy life. I talk about certain on-going traumas that affect people with my abilities – the assumptions, for example, that we will do what we are asked, that we should never be a nuisance, that we should be inconspicuous and no trouble, and, above all, never embarrass anyone. (Can others embarrass us? Well, yes, that is fairly routine.)

“Trapped” also explores some myths of mainstreaming that we all face at some points in our lives. If only you will be good, if only you will work hard and make us proud of you, the myth whispers, you too, can have all that we have: friends, family, a wonderful job, meaningful occupation, a fantastic, fulfillingly amazing emotional life… And, as anyone will tell you, it ain’t necessarily so. We all fall down, at times. We fail exams, we break up relationships, we may even become homeless or destitute. But the common thread in all these low points is that – in more ways than we are usually aware – we are the same. We all have stories to tell, and lessons to learn. And in that, we are, and can always be, bigger than the sum of our parts.

Thanks for listening.

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August 8, 2019

Memoir writers and privacy

'Trapped: My Life with Cerebral Palsy', cerebral palsy, Fran Macilvey, Memoir, The Rights & Wrongs of Writing 2 Comments

Memoir writers and privacy

Here’s a new idea that I saw voiced on a FB thread recently. That it is rich – and I paraphrase – for a memoir writer to complain about breaches of privacy.

The imposition on online users of various extra security rules and requirements, for example, being asked to supply our phone number for extra security, or told we “must” download our banking app onto our mobile phone, seems to be becoming more widespread. These extra security measures sound harmless enough: if we are in France our holiday, say, and we attempt to log in to Facebook, there are times when we will be blocked from doing so. I assume that the mega computers are suspicious that we are not ourselves, and we are therefore asked to supply extra data for verification before we can access our accounts. (At least I now know what “Please add your phone number for extra security” is all about. I have not and will not give out my phone number. And so, I won’t use on-line networks when away from my usual domicile.)

However, I started this blog post to probe one suggestion made, that it is rich – and I paraphrase – for a memoir writer to complain about breaches of privacy.

Huh?? Memoir writers are people with lives that go well beyond the content of a memoir or even a confessional, weekly newspaper column. And if we write sensitively, no-one else we mention in our memoirs – and other people usually feature tangentially – should not come off too badly. I change names, alter circumstances, and in any case, my recall is often at variance with that of others, which acts as a natural, protective barrier around our personal lives. “What? I don’t remember that!!” is not simply about perspectives: it places our recall at a remove which ultimately, is like a safety valve.

I think, I suppose, probably, that the assumption made, that memoir writers have no expectation of privacy, has two parts. First, that memoir writers have already laid their lives out for public scrutiny, and therefore, they are used to it, expect it, and have somehow forfeited their rights to privacy. Second, that they – I am supposing – have already made reference to the lives of others in, I am supposing, a rather presumptuous fashion and therefore, have a bit of a cheek supposing that they should be entitled to privacy when those they write about have been “outed”.

Both these assumptions are questionable at best. Memoirs are often an attempt by writers to make sense of chaotic or baffling circumstances. They are an attempt to join with others in understanding, to reach out and console, and to get beyond first base and live better lives. That all seems very useful and worthwhile to me, and doesn’t lend me to suppose that memoir writers have skin like rhinos or are uniquely tough and open-all-hours type of people.

Thanks for listening.

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August 2, 2019

Passing the buck

cerebral palsy, Fran Macilvey, Fran's School of Hard Knocks 4 Comments

Passing the buck

I was speaking recently to a friend, whose wife has a long-term, incurable condition, and whose original lifetime award for DLA has recently been reassessed. The outcome of her claim is that she has received a two-year award for PIP. Which means, she keeps her car meantime, and can keep working, as long as she is able. It also means that in two years, she will have to re-apply, and start jumping through a fresh set of hoops.

In two years’ time, we are supposing that a package of existing welfare benefits, including PIP, will have been devolved to the Scottish government. So, by handing out short-term awards, is Westminster simply passing the buck? All the existing, temporary awards that have recently been made are going to require reassessment – unless they are also lifetime awards – when they expire; and one result of awarding PIP even for a short time, is that no “parachute payment” (awarded when a claimant who qualified for a vehicle under the old DLA scheme loses their entitlement under PIP) is paid.

If the outcome of my reasssessment is that I lose my car, then at least I have one major comfort: When benefits are devolved, I can reapply to the Scottish Government and see what happens. Whatever their decision may be, I’d rather have decisions about my benefits entitlements taken by an independent expert – not ATOS or AWOL please – and emanating from a political administration with which I have some sympathy. Sorry to say, but I’ve never voted conservative, and I don’t think I ever will: I am just too aware of the undeclared value of “social capital” – “good” education, “privileged” up-bringing etc – to suppose that it has no effect on our democratic processes. Although, if current political developments are anything to go by, there is evidently no guarantee that even with social capital, we obtain sound governance.

I’ll keep you updated on the progress of my PIP application.

Meantime, thanks so much for listening.

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July 30, 2019

Applying for PIP

cerebral palsy, Fran Macilvey, Fran's School of Hard Knocks 4 Comments

Applying for PIP

“Pip” is the working title of my third novel. it is also the TLA for “Personal Independence Payment”, a benefit which replaces DLA which is now being discontinued.

And so, finally, two days before the Summer holidays begin, the notification from the DWP arrived informing me that my DLA award is being reviewed, and so now I need to think about applying for PIP. I don’t have to apply, of course. I could draw a veil over my private difficulties, hand back my motor vehicle and resign myself to an even more indoorsy kind of life. However, under the current scheme I qualify for a car, and if I would like to keep running it, I have to make the attempt, and so I will. Instant flare-up of stress eczema.

I know – I know – that everything is somehow working its way out, but despite my faith and my determination to stay calm and happy – if I get upset, “the system” wins twice – stress fractures begin to appear, at first invisible and then more defined – a brittle cheerfulness that takes teasing too seriously; a paralysis that means I look to my husband for what to say, and how. More falls and staggers, a growing sense of futility and sorrow. Nightmares. Memories that assault me. Arguments with my husband that leap up out of no-where. I weep at the prospect of having to expose my intimate failures to the scrutiny of strangers who ask me, “How bad is your condition?” Having been so private and self-reliant, it upsets me to place all this information in the public gaze…

Meanwhile, there is comfort in continuing to do what I have always done, despite the concern and the renewed worry about the future, and being tired all the time. If I cannot keep my car, I may be able to afford another, but… I remember how it felt, before: the constant fatigue which frayed all my certainties to shreds. I am chary of a system that requires me to revisit all my painful compromises with forensic attention to details, which, in any case, are constantly changing.

~ Sure, I fall onto toilet seats and am periodically incontinent. Do you have to know that?

~ Yes, of course we do…

Systems that gather information with an undisclosed purpose to be sceptical and interrogatory, imply, perhaps without intending to, that applicants are exaggerating or untrustworthy. But I have worked, and continue to work hard, at all manner of quiet details with which the government takes no notice: caring, housekeeping, being aware of what needs done and doing it as best I can. In all that, I crawl when I cannot walk; which is a private indignity that I would prefer to keep to myself.

Since it seems I no longer have the option of keeping such things private, I share them with you here, in the hope that others may take some comfort from the evidence of my weaknesses: because we all have to deal with indignities, which say nothing about who we really are.

Thanks for listening.

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June 27, 2019

Having an impairment

'Trapped: My Life with Cerebral Palsy', cerebral palsy, Happiness Matters, The Rights & Wrongs of Writing 8 Comments

Having an impairment

I hear from readers quite often, writing to me and talking about having read Trapped. Typically a message will begin, “Hi, I’m Andrea, I’m 27 and I have cp. I read your book and…”

Which makes me wonder. Some readers want to write, and ask for advice about that. And I would say, if the first thing you identify about yourself is that you have CP – or any kind of impairment – then yes, you do need to write, if only to get that narrative out of your system.

For decades, my intro line was, “Hi, I’m Fran, I’m X years old and I have CP.” But really, identifying what might be the main challenge in your life as essentially You, is a bit limiting. I have CP, yes, but it no longer defines me, or limits me. The sense of having limitations is odd, relying as much on other people’s ideas of what is possible, as my own. And, I choose not to see myself like that anymore, because to do so is unnecessary and unhelpful.

I’m Fran, I am fifty-four and I have blue eyes; dark blue, almost teal, with a ring of brown around the iris. I like singing, so much so that even at my age, I do so unselfconsciously only dimly aware that other people consider this eccentric. I sing along to music in the supermarkets, because there seems no reason not to: it’s the kind of thing that other people would do, if only they had the nerve.

I’m Fran, I’m fifty-four, and I’m a carer. I care for my family, and for my mother, and I care about the environment. At the moment, four large men – or is it five? – are trimming back the trees at the bottom of the hill at the back of our garden, and I have wept, because I love those trees, which, for me, are a precious glimpse of wildness in the city. I love those trees for being a refuge, for whistling when the wind blows, for being solid and optimistic, and for growing with branches extended wide. And for being taller and bigger than me. For being unfathomable and private to many creatures I will never see. For being faithful, for believing that growth is good and life is sacred.

As for having an impairment… What is that? Is it, as the social model of disability would have me believe, something that I really should be able to ignore? I’d like to, but actually, trying to ignore it is like trying to ignore the elephant in the room…

So instead, I try to make friends with the elephant and listen to what it might be trying to tell me. Often, I might chance a ride on its shoulders, from where I have the most amazing view of life. It’s a metaphor I prefer to play with, rather than push against. And, if we are playing with this particular metaphor, it might be an expensive thing, that hints at a grander life, needing a bigger space to play in. I love those trees because they were elephant sized, and expanded my sense of what I was. Looking up at them, I forgot about having an impairment.

Thank you for listening, and have a wonderful summer vacation.

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June 24, 2019

Doing what we enjoy

Fran's School of Hard Knocks, Happiness Matters 4 Comments

Doing what we enjoy

I’m thinking of writing a series of articles about Life and how to live it well: observations and conclusions often drawn from the times when I’ve not lived so well, perhaps because I’ve found myself caught and bound into doing things I didn’t enjoy.

And now I would say that in life, which can be wearying at the best of times, if we want to live well and happily – I might even go so far as to say that, since we are given life, it is our sacred duty to live joyfully – we really should only be doing what we enjoy.

We’ve heard it said often enough that an insincere gesture is not worth a bean; or rather, that the smallest sincerity is worth more than the biggest obligation.

And so, if we unwrap that to the whole of our lives, it makes sense for us to do what we choose, and avoid those things we don’t. Unless, that is, we can muster enough heart and desire to do all things with a sense of lightness. Otherwise, what is the point? Sooner or later, our disgruntlement will leak all over our generous, polite, obliging veneer as we falteringly try to explain why we went to such an effort. And if you are anything like me, the disappointment from not making it work, will be acute.

So starting from now – not, like in most cases, first thing tomorrow, but right this minute – I think I’ll do what I enjoy, and really enjoy it. That must surely be why people call life a gift, or a treasure: because we can do what we like with it.

By doing what we enjoy, we also make the point to others that they are free and not beholden to us. Our freedom – and our evident joy in our freedom – sends a message that others are equally liberated from the bounds of expectation, rules, obligation, to do as they please.

Now that is a liberating thought.

Thanks for listening.

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June 19, 2019

“Bitter Leaves” by Tabatha Stirling

Books I Have Reviewed 0 Comments

“Bitter Leaves” by Tabatha Stirling

“Bitter Leaves” is a fascinating account of the maid culture in Singapore that pulls no punches, beautifully written and heartfelt: a worthy companion on my very overloaded bookshelves.

I am usually hesitant to engage with darker narratives, but from its beginning, this novel about the lives of four women held me, and I was very impatient to know what would happen to them, though the details of their lives were so engagingly laid out for examination that I was also reluctant to hurry my way through. This is a book to read slowly.

I find it hard to convey why I find Ms Stirling’s novel so special: colours and shades are lovingly crafted and poignantly expressed. It’s also very clear that Ms Stirling is not simply writing a book: she is recounting experiences she has lived through and witnessed, and is offering a plea for humanity in a flawlessly presented text. The details she invites us to share come from the deepest part of her offering as an author.

All of which is really hard to put into words, though I’ve tried, because this book is such a worthwhile, compassionate read.

At times I wondered how the author managed to keep each character separate from the others without going slightly crazy. Reading their stories, I feel as if I have been awarded privileged access into their complex lives: Details and personal quirks come alive most convincingly, and, even when the characters are less than likeable, I can understand and relate to them.

Occasionally, the voices bleed into each other, but it is remarkable how rarely that happens. I’ve waited for many years to read this book, which I first read in draft on “Authonomy” and it has certainly been worth the wait. One to cherish and re-read often.

Thanks for listening.

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June 17, 2019

Reading real books

Path To Publication, The Rights & Wrongs of Writing 3 Comments

I like electronic readers. They are handy and lightweight and they fit easily into a pocket. I can carry one anywhere and load literally hundreds of books onto it. E-readers are slimline and sensible.

But – there’s always a “but” with that kind of optimistic opening statement, isn’t there? – despite their bulk, I still prefer reading real books. Perhaps some part of me is put off by the way in which electronic text sits flat behind a screen, perhaps it’s the way that the obviously monochrome quality of the delivery leaves me feeling disengaged and somewhat unconvinced, perhaps it’s that real books all feel different – different weights, different sizes, fonts, covers, page thicknesses… Reading a book, I can almost feel it speaking to me, in a way that I find missing with electronic media. Is it that electronic book files are almost too alike, or self-consciously clever? I’m not sure.

In any case, my house is now overflowing with books – and I speak as one who keeps her sentimental attachment to them well under control. Living in a small flat, with a husband who is loath to part with his volumes and a daughter whom I am trying to encourage back into a reading habit, I cannot afford to do otherwise.

I’ve also been helping my mother to sort and deliver many of her books to the local second-hand stores, where they are gratefully received. Mum adores books and sees each of her favourites – and there are many – almost as a personal friend, an intimate acquaintance who has been with her on the journey as she has researched and written a dozen books. While she has done a great deal of her research online, still, she would be appalled if I suggested to her that all the material benefits of real books could be replicated by reading electronically. Indeed, she would scoff, demonstrate my folly, and then perhaps suffer a panic attack at the very notion. So we are, and will be, reading real books for the foreseeable future.

Thanks for listening.  

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