cerebral palsy

February 7, 2018

The price of social conformity

cerebral palsy, Fran Macilvey, Happiness Matters 0 Comments

The price of social conformity

It seems rather sad to me that, in an age where it is becoming increasingly unacceptable to discriminate against individuals for any reason in the social sphere, neonates are not, apparently, always to be embraced in the same way.

Pre-birth testing, in which a range of genetic anomalies is screened for in early pregnancy, is not 100% reliable, but is the small percentage of ‘false positives’ an acceptable margin to eliminate non-mainstream presentations? And how much does society lose as a whole, in firstly, our acceptance of the principles of screening for their own sake, and secondly, from the loss of the gifts that accrue to society when we live with and encounter difference?

Ethical questions such as these will not go away any time soon. Meantime, we need to ask ourselves how far we value conformity, and to question how far we are prepared to accept medical screening advances that carry a sting in the tail. How far are we prepared to accept the rights of ‘society’ or ‘medical convention’ to dictate outcomes? How strong will we need to be to resist the pressures of our peers and our families to conform? And what do we lose in our insistence on ways of life that exclude individual traits that happen to occur in a minority of the population?

Is it acceptable, in an age where we pride ourselves on being more tolerant and open, to put certain families and individuals into the spotlight in this way, simply because medical screening is increasingly widespread and risk free? If we are lucky enough not to have such risks running in our families, it is easy enough to say, “Yes, of course…!” but in families where certain traits are well known and recurrent – Huntingtons, for example – is it fair to impose that kind of social expectation?

Individual choices impact on society in surprising ways, and the cumulative effect of individual choices to proceed with terminations of, say, Downs fetuses, may, indirectly cause society to become less robust, less tolerant of difference. Compare the ‘rain forest’ model of life, in which many different aspects live with and among each other, with the ‘plantation’ model, in which only certain traits are encouraged, and the others are screened out as ‘undesirable’ or ‘unnecessary’. I worry that, since we do not know all the relevant variables in this debate, we may be making decisions now that have a significantly adverse impact on social provision and attitudes in the future. If we screen out genetic traits, might we also screen out other traits that we deem less than desirable?

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February 2, 2018

Lessons learned from writing

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

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 15, 2018

How we define ourselves

cerebral palsy, Fran Macilvey, Fran's School of Hard Knocks, Uncategorized 0 Comments

My earlier post ‘Dissing Ability’ has left me wondering.

If, as I suggest there, most employers and most members of the public are at worst incurious about impairments and, at best willing to be encouraging and supportive, from where comes this habit we have acquired of identifying ourselves first and foremost by what hinders us: “Hello, my name is David and I have CP.”

Increasingly, anti-discrimination legislation is regulating what we regard as acceptable behaviour carried out in the public eye. We are all guaranteed access to retail outlets, to cinemas, to public pools and all forms of transport; we can expect respect in speech and in public gatherings of all sorts. Even smoking and littering are punished with a fine. So, if the public at large have few problems and are willing to see progress in more tolerant attitudes, whence cometh the idea that we must define ourselves by what we can’t do? Naturally, it seems that such attitudes are dying out gradually, and good riddance. No-one I know seems to miss them.

Is it the form-filling? The questions – on very long forms – that we have to answer, in order to qualify for public assistance? Is it the expectation, even in this day and age, that all our income must be justified and scrutinised, earned and worthy? I wonder…

Claiming benefits these days is a very complex process, designed, so many suspect, to put people off claiming their share of what should be a universal entitlement based firmly around need. But why make the system so complex? Increasingly, claimants are required not only to navigate a system that makes Mensa members look slow-witted, but to answer personal questions – can you dress yourself? Can you go to the toilet unaided? Can you climb steps? – which have no place being logged in the public sphere. Having answered questions like these to the best of their ability, service users are often penalised for later failing other requirements, time limits, box ticking… It’s not just adults with various impairments who are affected. The long-term incapacitated, single parents, those with caring responsibilities… Many people claiming benefits have to answer rather oddly prejudicial questions about their personal circumstances.

Personally, I favour a system of Universal Basic Income, which would allow us to get away from needs based assessments, encouraging us all to get on with their lives in any way we wish, without undue intrusion from the State, and without salacious and misinformed information gathering. Such as step as universal basic entitlement would remove most of the pretexts that currently exist to allow the collection of personal and private data.

Because service users become used to a system, numb to its cruelties, does not make it right, or worthy of one of the world’s richest nations in the twenty-first century. We need a system that allows its citizens to go about their lives, living as they choose to live, without undue intrusion and respecting their rights to privacy, peace of mind, honesty and personal dignity.

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January 10, 2018

Dissing Ability

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

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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October 25, 2017

No laptop for me

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

No laptop for me, IDS

Funny what I think about in the middle of the night. I can’t use a laptop. Strange, the realisation that it’s not worth the heartache of buying one of these svelte beauties only to see it crushed or dented when, as will come the day, I trip and fall while carrying it. Not to mention what that’ll do to my wrists, elbows, etc.

Which led me inexorably on – as these things do – to the injustices of Universal Credit, a scheme dreamed up, in all its complacent cruelty by the great Ian Duncan Smith, who, having planted this pseudo democratic notion in the minds of enforcers, has conveniently abandoned any position of authority from which he might mitigate its worst effects. His subsequent apparent change of heart and resignation from the cabinet is gesture politics at its most pointless.

But my point is, Universal Credit, introduced by Westminster conservatives to mimic the universalist character of Universal Basic Income and to offer the comforting illusion that the welfare state is non-judgemental and fair, is an impossible scheme, intended to be accessed and assessed on-line (in a constituency for which basic literacy is still a major issue. Texting is ill preparation for the simplistic brutality of on-line questionnaires). Those who depend on welfare benefits to top up in-work pay or to shell out bus fares to attend interviews (non-attendance at which can lead to sanctions) are not going to be worrying about laptops. They might be worrying about their phone credit, but how many people will access benefits from their phones?

Doing it on-line sounds sexy, fun, quick and easy, but only for those who can take the basics – a plug, an electrical supply, a computer, patience, distraction-free time, warmth and comprehension – for granted. And anyone with these advantages is not likely to be the person most in need of welfare support.

A quick glance at IDS on Wikipedia suggests that he is not short of a penny. So it’s rather sad that from the comfort of his family’s wealth he has been central in forcing those who are already down on their luck into a system which is arbitrary, slow and painful to navigate. It may not matter to IDS if he doesn’t get paid for six weeks. He might not miss the occasional sanction for turning up late; but a sanction under UC affects the entire payment, including housing benefit.

Those who apply sanctions are so rarely called to account – and by the time they are, the damage has been done, so that’s all right, then. Frankly, I’m embarrassed to be part of a society which has the unbridled power to impose pie in the sky schemes against those who have so few resources with which to fight back. Since ancient times, those in power have sought to clean up and educate the masses. I wish they would just offer us all dignity.

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September 22, 2017

Doing something badly or not at all

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

Doing something badly or not at all

Doing a thing badly or not at all, is a question that has rather haunted me.

When I was younger, I was a disciple of perfection, so tended not to do anything, unless I could do it perfectly. That, of course, is rather meaningless, and entails doing nothing for long periods of time – what a waste.

But rather like the drinker who crawls inside a bottle for twenty years to escape the pain and finds, on her re-emergence that all her lessons are still waiting to be tackled, doing nothing for fear of doing or saying the wrong thing, is only a stop-gap. Sooner or later, these same lessons will come knocking at the door, demanding admittance. And it’s not use, either, deciding flatly never to engage, because there is a strong likelihood that the same lessons will come back again in future lives. (This is a subject I write about in my next book, Making Miracles, set to be released next May – which is just my way of saying, as soon as I can find the time to do it.)

I now would much rather attempt a thing, than decide not to bother, so long as I consider it worth the attempt. I think, also, that as we get older, our fear of making a fool of ourselves diminishes. We get to thinking that it might be rather fun to take a chance on something, for a change, it might be rather fun to make a fool of ourselves. If we don’t do it soon, when will we? And who cares? Our time becomes very precious when we can feel its tangible quality.

Also, I admit, this particular lesson – that it is better to try and fail than not to try at all – has real resonance for me because, as a disabled youngster, I felt such intense pressure to pass myself as ‘normal’ – whatever that means! I would sooner have volunteered to fly to the moon, than single myself out for the intense ignominy of failure, no matter how unlikely that outcome, and no matter that most others would not be thinking about failure, while watching my attempt.

Strange, the things we torture ourselves with when we are young. Youth may have a blank canvas to work with but self-definition is often painful in the acquisition.

Thanks for reading!

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September 1, 2017

The longer we leave it

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

The longer we leave it…

We all have these key moments, when we have to do what it is staring us in the face, or go stir crazy.

Like the time I decided, ‘Right, I have to write my memoir. I have to do this, or I’ll die. And, it might kill me in the process – from embarrassment, anxiety, exhaustion, sadness – but God dammit, I’d rather die trying, than die of boredom and depression and regret. If writing this – and going through hell – is what it takes, then fine! I’ll take that chance.

Life always gives us challenges. And the longer we ignore them, block them out, dodge them or make excuses, the harder will be the next tests we face. Similar challenges form a pattern that may be very familiar, and will tend to revisit and repeat, until we get the message that, yes, we do have to deal with this head on. The longer we prevaricate, the greater the challenge grows, just to test our resolve. We have to take our courage in both hands and clamber aboard. The longer we leave it….

But such challenges are offered for a reason: perhaps to allow us to recognise and rework a defeatist pattern, to teach self worth; even, sometimes, to resolve issues have haunted us forever, such as a pattern of failure or settling for painful compromises, never allowing our true colours to shine bright.

In my next non-fiction book, Making Miracles, which is set for release in 2018, I share my dream diary, in the writing and re-reading of which, I recognised repeating patterns that have persisted over lifetimes. These I had to take on board if I wanted to make progress in this life. Luckily, I did, in the nick of time.

So let’s follow our dreams, people! The world needs folks with courage and faith to do what they know they have to. Let’s live like today is our best day.

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June 26, 2017

Writing for teens

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

Writing for teens

I’ve never seriously considered writing for teens, though my daughter has asked me often, if I would consider it.  So it comes as a bit of a revelation to me – not for the first time, I realise – that young adults, teens from all over the world enjoy reading my memoir, Trapped.  In exploring my life as it was, I never set out to consciously write a book for young adults, though my prose style tries to avoid over-sophistication.  (Even as I write that, I worry: my daughter asked me recently if I swallowed a dictionary…do I still use three long words, where one short one would do?)

Last year, I was delighted to hear of a class of seventh graders, twelve year olds in the USA, who were set Trapped as a reading text by their class teacher.  And recently, Sam Keane sent me a review, which I have included as a recent blog post.

I have always assumed that Trapped, being about a depressed, angry and sexually frustrated woman who only wants to be happy – to be allowed to be herself – would place it firmly in the ‘adult’ category.  So how do I feel, knowing that youngsters read about my sexual frustration?

It may be that teachers, using the text as a study tool for young adults, delicately sensor the text; or more probably, since I was at school, there has been a revolution in attitudes around sexual experience.  My daughter, I know, benefits from a full and candid exploration of attitude to sex at school, which contrasts markedly with the tiptoeing and cringeworthy explorations that we endured in late primary education in the late 1970s, and which left us with more questions than answers.

Perhaps my attitudes are well out of date, and what I consider cringeworthy and embarrassing is merely part of life, these days.  It could just be that young adults are less phased, that they listen, decide and make up their own minds more readily about what they experience.  If that is so, then I am pleased, and I applaud the sophistication of young people.  They, so much more than my generation, tell the truth and expect to hear it, so are unlikely to be phased by a few truthful, passing references to the sexual experiences of one woman who, if she’d had her way, would have loved to find more ways of enjoying love.

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June 8, 2017

Review of Trapped by Sam Keane

'Trapped: My Life with Cerebral Palsy', cerebral palsy, Fran Macilvey 3 Comments

This morning I received a review of Trapped by Sam Keane.

I’ll let Sam speak for himself.

‘My name is Sam I’m a young adult battling Cerebral Palsy.

For my final project for English class we had an assignment to write about a non-fiction book.  I wanted to do my assignment based on something real, something I could directly relate to in a strong way.

I chose to write about life with Cerebral Palsy and some of the choices and consequences involved. The choices and consequences weren’t just about life Cerebral Palsy but that was the main focus.

I began to read Trapped: My Life with Cerebral Palsy by Fran Macilvey and as I’m reading it about 5, maybe 10 pages in, I felt a sense that this is what I wanted. I knew right away that Fran’s book was… the one. I’d already found a number of things that she’d described where I’m saying in my mind “been through that,” “felt that way” or “that’s me too.” Some of the similarities to what Fran described in the book and my own life were on the opening page, when she talks about falling and the “familiar, rough embrace scraping skin off my knuckles or palms, which are now embedded with gravel adding spots of blood to the muddy mess on my cuffs.” This was and is something I constantly went and go through since I could walk, a feat which I didn’t accomplish until the age of 5.

On page 85 Fran writes, “The world of physically active tends to be uncompromising.” Yup I agree completely. Time and time again when I’m being physically active whether in phys ed class at school, or with friends, I always feel like being active feels like a grind, trying to keep up with them. It’s not easy, even though the people I’m with, classmates and/or friends are unfailingly compromising to the fact that I have a disability. Always my friends, classmates, make the games and sports we play accessible and fun for me as much as they can. Even with that being said I still need to put in twice, three, even four times the amount of energy they do, no matter how hard they try to make it better for me. That’s just the way it goes and I’m 100% ok with that because I love sports and the challenge it brings to play.

Page 87 “Am I going to ‘get better?’ No I’m not. My condition is inoperable, permanent, and I am not ‘broken’ in such a way that a tube of glue or a pile of nails will fix anything.” That is something I sometimes feel when asked if I will ever “get better.” It was an absolutely amazing book with lots of relatable feelings, events and experiences that not just me but others with Cerebral Palsy can directly relate to.

I want to personally thank Fran Macilvey for writing this book and for sharing what her life was like with Cerebral Palsy and not just that, but her life in general. Fran, thank you, your book has given me something I can relate directly to in a strong way. Very inspirational read as well.’

Thank you so much, Sam, for sharing your thoughts here. I’m glad when what I write can show we are all working together to make life better, step by step.

 

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May 12, 2017

What Remploy did for me

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

What Remploy Did For Me

When I was a beneficiary of its expertise, Remploy was still owned by the Department of Work and Pensions. Following extensive factory closures, it is now in private hands, owned by Maximus and an employee trust. Since the reorganisation, what has happened to its disabled employees? They have not just gone away, and there will be hopeful for suitable openings, as anxious as the next person that their last job will not become a distant memory.

I was in and out of work as a solicitor over a period of twelve years.  At one time – how embarrassing to admit this – so poor was my bargaining position that I desperately needed help to regularise my pay and paperwork. My well-intentioned boss was a single practitioner too busy to deal with it. Remploy agreed to accept me onto their books and was able to set my pay to rights, provide me with pay slips, sort out my national insurance contributions and offer a pension, as well as day-to-day advice and support. During periodic visits, my Remploy supervisor saw me working and asked why I didn’t find myself a proper job: funding limits meant that I was at the top of my pay bracket and likely to stay there. He obviously felt I deserved better.

Taking his words to heart, I did find another job quite easily. Because my new pay increased substantially, Remploy could not continue to support me and I bid them a fond farewell as I prepared to take my chances on the open market. But pay was only one part of their remit. They provided understanding, a position of bargaining strength and expertise, all of which I lost when we parted company.

Aware of my limitations, I took another post advertised as part-time, thirty hours a week. But as always, the devil is in the detail. To do the job, I was expected to accept unrealistic deadlines set by other people, and was forced to work after hours. The pay was great, but nothing was added for overtime, which stretched uncomfortably until I was easily putting in forty hours a week. For an able-bodied colleague that might be a nuisance. For someone with a disability, the effect is more insidious. After six months, I had to rest, but when I asked for a day off each week – planning to fit thirty hours into four days – twice my request was refused without any discussion. Exhausted and faced with targets I struggled to meet, I had to leave. These days I work from home, aware that when I put in a forty hour week, at least I can do so from the comfort of my armchair and take frequent breaks. How many employers can afford to be so relaxed?

For those of us who might wish to work independently in the job market, the truth about Remploy is that their continuing support has been vital for longer-term success, though this is not always obvious at the outset. Remploy helped me to stay in work because they understood my practical dilemma, which no other employer would take account of in the normal course of business: I needed to be able to pace myself. Remploy were able to find a formula that worked. In so doing, they enabled me to take a longer-term view. Once their support was removed, I soon found myself unable to manage in an environment unapologetically geared to an able-bodied workforce.

According to the Sayce review which recommended the closure of Remploy factories, funds available to make finding a job easier are better targeted at disabled employees directly. In the same way that disabled consumers have the right to visit shops unimpeded, employment seems increasingly to be treated as a matter of access. The disability alliance website notes that “Access to Work helps disabled people and employers with adjustments to premises, transport costs and other in-work support” all of which certainly help. But what happens once an employee with impairments has a foot in the door?

Overwhelmingly, employers consider one aspect of work: their financial costs and gains. While disability discrimination legislation has made great strides forward, there remain many aspects in which the market driven-economy can skip neatly around its obligations to disabled employees. In hidden and insidious ways, a disabled employee often remains at a disadvantage, no matter how many hours are devoted to employee relations or however many policies exist to allow flexible working. Unfavourable comparisons around productivity, punctuality, sociability, public image and teamwork remain.

A friend of mine who is disabled and writes plays about disability wrote to me, “(we) should be judged according to others in your circumstances”. But how many disabled people can keep their place securely in mainstream employment? It is a difficult conundrum. In the Remploy factories, impairment has always been the norm, which was at least useful when it came to making meaningful comparisons.

So long as each former employee of a Remploy factory has found work and access to the same levels of continuing support, the changes in workplace structure and ethos may not impact too badly. But somehow, I doubt that the necessary levels of support will remain available over the long term.

Remploy has efficiently and quietly gone about its business over many years. If it had been making a lot of noise and grabbing the headlines, its contribution to the lives of disabled adults might not have been so easily refashioned to suit an ideology which assumes, on scant evidence, that for a disabled person the difficulties of finding and keeping a job are easily sorted with a bit of remodelling. The architects of the changes will not be waiting around to pick up the pieces if their optimism turns out to be misplaced.  Yet, as news reports of the time indicate, barely one third of the employees made redundant during the privatisation processes have found re-employment. Old-style supported employment has its place in the scheme of things, after all.

I hear that Labour are planning to re-nationalise. Will they re-nationalise Remploy?

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