cerebral palsy

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 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 10, 2019

Getting life into gear

cerebral palsy, Happiness Matters, The Rights & Wrongs of Writing 4 Comments

Getting life into gear

My “to do” list reads like this: housework, swimming, shopping, recycling, visiting my mum, shopping, tidying, answering the door, and getting life into gear. You know, get a grip, get organised, do things.

But… I’m doing them already, and there must come a limit to the number of times, or the speed or the efficiency with which I tackle the jobs in my life. Some things are more fun than others. Visiting Mum, while sometimes worrying, is also enjoyable, interesting, and a good way to remind myself of life priorities, in other words, how lucky I am.

But still, the notion resurfaces occasionally that I could do with being more disciplined about my own work, that, “I need to work harder”. Periodically, I glance at the stats comparing average earnings with mine, and think, “Right! It’s time to get organised…” and I wilt, thinking that surely, hard work alone does not answer that particular ambition.

So perhaps there is something else I could be doing, some different way in which I can frame life challenges that would make achieving things easier. Perhaps I’ve known all along that if I can make enjoyable what I am doing, that is worthwhile in itself. When I am happy, life is already lighter and more interesting, and my life automatically becomes what I want it to be.

More soberly, I begin to perceive that there is a marked difference between pain – which is, I believe, an inevitable part of life, the see saw of change – and what we generally call suffering, which is what happens when we internalise pain, in some ways erecting it into our next great project. Pain of all sorts is both natural and inevitable; our thoughtless conversion of it into what we call suffering might become a bad habit. I know myself, that I can tolerate quite a lot of pain. And so long as I do not rehearse it, hold on to it, I can accept it, feel it and allow it to be until it goes away. I do not also need to say, as I have been in the habit of doing, “Ah me, I am in such pain, life is hard etc etc etc.” Which is a bit like picking myself up from a fall, only to bash my head against a brick wall…

Funny what I think about while waiting at traffic lights.

Thanks for listening.  

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May 28, 2019

Taking things for granted

'Trapped: My Life with Cerebral Palsy', cerebral palsy, Happiness Matters 0 Comments

Is taking things for granted a privilege? Sometimes I think so, yes, of course it is. And in the spirit of taking things for granted, I yearn for the quiet life, untrammelled by pangs of conscience or worry, reading my books, sat warm and comfortable in a peaceful space…with a clear mind and gentle ambitions carrying me through the years.  

Yet, such a vision of privilege and calm makes me restless: to live! Despite all the small obstacles that seem to gather round like spectres on a stormy day – there are always things I have to do, needling me away from what I prefer to be doing – something keeps my head up, and my desire to move, moving: I know I will get where I want to be, if only I keep faith. I will go for walks in the fresh air. I will enjoy swimming and laughing. I will write blog posts, I will finish my books and submit short stories. I will have fun and live a big life. I do.

Reading an account by a Buddhist friend of mine, who first became aware that recounting his life’s misfortunes made him the envy of his Buddhist friends – for to have misfortune thrown at one’s feet is to be given opportunities for that most sought-after gift, spiritual growth – made me realise that in some way, all misfortune can be strengthening: it puts one’s own circumstances into different contexts – I lost my house in a fire, but I and my kids escaped unharmed – or it forces one to choose fully – I’m alive, by some miracle, and I don’t intend to waste another second.

It’s taken many years for me to come to an accommodation with who I am and the challenges I’ve been given: small ones, like being constantly uncomfortable, and bigger ones, like making something meaningful out of life, not just existing. And I still rock between being sharply aware of the many ways in which I am fortunate – is that sharpness forcing me to notice ways in which life can be unfortunate? – and relaxing, trusting that I am allowed to enjoy life fully. As they say, Life is a work in progress, and I think I’m making progress.

Thanks for listening.

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May 22, 2019

Reactions to my books

'Trapped: My Life with Cerebral Palsy', cerebral palsy, Happiness Matters, Making Miracles, Memoir, The Rights & Wrongs of Writing 4 Comments

Reactions to my books have been and continue to be overwhelmingly supportive. I am very touched that my story has reached so many readers, some of whom have contacted me with messages of love and support and to share their own stories.

I’m glad if my experiences can help to inform and console: in navigating our way through life, I find there are few more toxic experiences than being lonely.

Many whom I would count as good friends express surprise, saying, I had no idea. They are astonished that so much can have happened of which they have been unaware, though of course, since I have been introverted, depressed and solitary for so many years, it is unsurprising to me that, until now, the best way I knew to maintain my dignity was with silence: I’m less ashamed of how things were then, and can talk about them. And my shame has a different quality – less, how embarrassing; more how could I tolerate that? which makes me want to advocate, not hide.

Which must be one reason why I started writing. I feared being swallowed up completely by my tendency to silence. So I gave up the unequal struggle to hold it all in, knowing, even as I wrote, that eventually, when I had smoothed it out a bit and found a way to come to terms, I would go public, despite an intense desire to chuck it all in and run away: my reactions to my books are still mixed.

I still think it matters to maintain peaceful dignity. But often that is a way of staying away from the helping arms that others willingly extend towards us. We do need to show our weaknesses, our frailty, and allow others to understand. I’m sorry that, for so long, I have been unable to share intimacies, or to trust that the reactions of friends and family would be supportive. I regret the missed opportunities to share more fully, because, at the very least, sharing would have helped me to notice that we all have stuff to deal with, we all struggle and suffer together in this melting pot called “Life”. Seeing that more clearly would have given me the courage to make more mistakes, be more outspoken, to take more risks so that I might move more freely and enjoy life more.

Thanks for listening.

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May 9, 2019

Difficulty moving forward

'Trapped: My Life with Cerebral Palsy', cerebral palsy, Fran's School of Hard Knocks, Happiness Matters 2 Comments

Difficulty moving forward

Here is a listening version of this blog post.

It is natural, when we have difficulty moving forward, to assume that we have no wish to move. And there are those who will capitalise on our difficulty with moving forward and taking the initiative by assuming, for example that, “Since you’re sitting there, you can do this for me / wait for me / come with me…”

But since I have worked out – so recently that it is almost embarrassing – that deciding, doing and moving are all that bit extra challenging for me and that taking that extra time and effort out of an average day counts as a peculiarly painful loss, I am now surprisingly indignant when I spot this habit gliding silently towards me, ready to take up position in service of someone else’s life, ambitions or expectations.

Paul D’AguilarPerfecto Resting

Hubby says to me, “Well, please go and do what you would like to do…” and is baffled that I find it difficult; while he would find it relatively simple to decide. He is a man who knows his own mind and is quite happy to populate his spare time with things he enjoys: more power to him.

But what if I have never really known what I would prefer to do? So that by the time my speedy friends have worked out their idea of a good time – “Want to go to the cinema? Great, let’s go!” – it’s too late for me to add my considered response, “Actually, I would really, really love to go and walk in a park with tall trees…” without sounding like a kill-joy. The assumption evolves effortlessly that I am countering an earlier suggestion with a no; whereas I am merely slower to unearth my preferences. (If I were able to leap into a blank canvas with my idea first, others could and probably would counter it, but at least my speed would shield my reputation.)

Perhaps I come to this now merely because I have reached an age in which it is expected that I want to go slower. I receive mailings about funeral plans, insurance for the over fifties, home equity release schemes, sedate holidays for those on the brink of retirement… Which are, again, lots of other people’s ideas begging a hearing.

Whereas I feel that I need to start moving. I have so much living still to do.

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May 1, 2019

Assessments for PIP

'Trapped: My Life with Cerebral Palsy', cerebral palsy, Fran's School of Hard Knocks 6 Comments

Assessments for PIP

I have not yet had through my letter box any intimation that my DLA is being reviewed. Most people for whom this is a concern have already been reassessed under the new regime, while I wait, and try not to think about when, or if, or why. The new scheme is massively behind schedule, and is also being transferred to the Scottish Government. Meanwhile, I wait and hope.

The new assessments for Personal Independence Payments (which replace DLA) measure our lives against a series of set questions, but, as with most tests based on a lengthy application form and a cursory examination on the day, little account is taken of myriad impacts which spread like spores through the body after an event or a series of events on a not-so-good day.

If our able-bodied colleagues who examine us fell and collapsed the way we do, they would be in hospital and would probably feel entitled to sue someone for compensation. We manage, just as we always have, and for our efforts and stoicism we are asked whether we can sit, stand, walk twenty metres and go to the toilet unaided: how little can we manage before we have to surrender the unequal struggle and sign ourselves up for twenty-four / seven incapacity?

The most frustrating things about disability are that it slows life down intolerably and comes with extra effort, extra pain, extra humiliation and uncertainty, and with extra costs which we are less able to recoup by joining your average labour market. Of course, it is no longer politically correct to suggest that workplace discrimination is a problem, but that doesn’t mean that a level playing field has magically appeared from the lumps and tussocks that constitute the average barriers to employment.

For now, though, it is these extra costs of disability that assessments should focus on, rather than the precise or exact nature of what we can and cannot do, which is difficult enough to articulate at the best of times.

It is a double loss that we, and many other marginalised groups, try so hard to fit in and find our efforts rewarded with misunderstandings, when what we would most value is a fair assessment of the realities of life near the margins. I don’t care if my neighbour has insomnia and three legs. I am not interested in whether one may be shorter than the other two. But I would be interested if her three legs disadvantaged her in finding work and meant that walking took her twice as long as her two-legged contemporaries.

The effect of disability on “normal” life is what matters, not the precise nature of our incapacities. These should remain a private matter for us to manage as best we can. The costs of these incapacities are the only legitimate concern of social welfare assessments.

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