Today I’m delighted to feature on Kathy Pooler’s blog, writing about my books, in particular how and why I wrote my memoir, Trapped: My Life with Cerebral Palsy.
I’m so grateful to Kathy for publishing my article on her website today.
Writing Trapped must rank as one of the hardest things I’ve done. Yet, it was the endurance test that ultimately saved my life and gave me a new sense of purpose, as well as countless opportunities to do things differently and see the world through fresh eyes. Having achieved that, no other test has seemed impossible, or anything like as daunting.
I do sincerely hope that my experiences with managing life challenges through contemplation, reading and writing will inspire others to take courage with their own personal mountains. We all have challenges to overcome, some expected, others that arrive like a cold whirlwind out of a clear blue sky. Whether we realise it or not, and whether or not we want to believe it, we can find ways to be happy, whatever life brings us.
That I have been enabled to find a path to peace through my writing makes me grateful beyond words.
I totter, I stumble, I pick myself up of the icy paving – ouch! – examine my hands for punctures and bleeding, and get up again in ungainly fashion. Doubtless someone is watching me, but I’ve got only one aim, and don’t care what I look like. As soon as I can, I forget – forget – about that; think about something else because doing so helps everything to heal better, and I feel much less pain when I raise my thoughts to something else.
Arriving back indoors, it would be so very easy to give up. Swallow the age-old dirge that “Life is just too hard, a shitty, bloody mess that gets harder all the time.”
I’m afraid I used to talk to myself like that all the time. But now, I can’t help noticing that, even as I get up off the carpark, actually, doing so is an achievement, something to be pleased about, a step in the right direction. Which makes me naturally inclined to look back at all the other steps I have taken – so many! – to arrive at this point, and to consider what I would like to do next.
I used to be so impatient. Always rushing, pushing, desperate to get finished. Perhaps that was a consequence of chronic discomfort, yearning to arrive somewhere softer, or perhaps I was not taught to see all the joys of careful patience. These are many, varied and ever changing. As is my appreciation for the way in which life unfolds, when we have the courage to take our time, break each task into small parts, and succeed by having the courage not to look always beyond to the horizon, but often, to simply keep on keeping on with what is directly before us.
Christmas comes for me as one of a hat-trick of celebrations – Christmas, New Year and birthday – which means that we all take a holiday and are in festive mode for about two weeks. My birthday is never a work day. Lucky me.
And for the first time, I actually, totally and completely enjoyed Christmas day 2018, feeling none of the usual feelings of dread, anxiety or unhappiness as used to dog my footsteps. Instead, it was simply a relaxed, enjoyable time. I even took great pleasure in cooking the Christmas lunch, and since I don’t much enjoy cooking, I count that as a spectacular achievement. Listening to one of my new CDs as I set the table, it also remember Christmas lunch as the last really handsome meal my mother ate: seconds of everything, and all with evident relish.
Only one thing I dreaded – sugar. I have a sweet tooth, as do most self-respecting citizens of Belgian extraction. But sugar makes me really ill these days. Not just a bit sore, but aching pains all night; the kind of pain that leaves me not just wondering, but knowing with a deadly certainty, that sugar simply isn’t worth the price I pay for consuming it.
So no more chocolate for me and few biscuits – in fact, none is better than one. (I’m that person who can keep a box of chocolates in the cupboard for weeks, but once I open it…!) And I’d much rather reach the stage where I lose the craving for sugar entirely. I know I can do this in about a month because, when I was young and we spent our holidays at home – where there was no sugar at all – and our terms at school – where sugary puddings were required eating – I would find myself utterly indifferent to sugar when I returned to school after the holidays. So it can be done.
My determination is, thankfully, holding. A moment’s reflection makes this a relatively easy choice. Would I exchange a moment of pleasure for three days in pain? No thanks!
Historically, it was argued
that ability was key to most jobs,
therefore adults with impairments were somehow automatically excluded from the
usual workplaces. Specialist workplaces followed, which catered particularly
for what were seen as unusual differences that would not be tolerated outside a
supportive, specialist network.
Now, that philosophy is dying,
and there seems to be more recognition and acceptance that there are very many different
ways of doing things, and that having multiple approaches to problem solving
benefits everyone. There is no ‘one size fits all’.
Adults with impairments enhance workplaces and the social scene in many ways. They enlighten and remind us about our priorities, shake up our perspective and re-shuffle our thinking: why worry about what people may think of our budget brand of footwear when our work colleague who uses a walker and struggles to breathe, has to get up every morning at six to make the trek to work by public transport?
Noting people managing ‘in the public’ in a dozen different ways, opens our eyes to challenges that otherwise, we wouldn’t notice. How would we cope with stairs with no handrails, uneven pavements and crowds of commuters? Sometimes it takes a view from the edge to see how we can do things differently.
Conformity is over-rated, and
I have come to accept that any organisation that insists on conformity in its
employees is inherently weak and will eventually fail. Allowing people to play
to their strengths and celebrating difference is actually a much more robust,
healthy model to work with, that incentivises its people and encourages real
team-work and collaboration.
And friendships with those outside our usual networks bring rewards that we would otherwise miss out on – a completely fresh world-view, perhaps an ironic sense of humour that can afford to be honest and unapologetic: when we have to work so hard to keep apace of what others take for granted, our speech probably loses a bit of its refinement…
The progress in our lives that has been made over the last forty years to foster inclusion for adults with impairments in the workplace and the social scene is significant.
However, the legal framework that exists to promote inclusive living, lacks teeth – would we rather that people ran businesses, or used the ardours of compliance as a reason not to do so? – and many organisations which are well placed to take on some of the provisions as they relate, for example, to making reasonable adjustments with an employee’s expected role in the workplace, seem to be remarkably ignorant that the world of work has moved on. How many local authorities know about the provisions of the Equality Act and enforce them with updated workplace policies? Not many, I fear.
The other problem, of course, comes down to money. As public services come under financial pressure, budget restraints are a fact of life for many of us. And it is too easy, as financial purse-holders take the broad-brush approach that seeks to solve as many problems as possible with the smallest budget, to spare a cursory glance at an individual’s life circumstances and decide, “This is what we have determined you need, so you will take it, and like it or lump it, (whether it actually helps you or not).” User-led organisations that produce good outcomes for their users tend to involve short-term investment in time and money that many think could be better spent in other ways.
But this talk of rationing is also, I feel, a bit of a red herring intended to keep us all in our places, grateful and a bit unsure. There is enough money in the system to give everyone the basic decencies. It’s just that the purse strings are controlled, at the moment, by many people who believe in the value of Trident and the arms industry, who promote fracking, and whose priorities are frankly different from my own.
For my own sake, I have to believe that talk of rationing and shortages is unhelpful, (in much the same way that if I tried to be too conscientious about environmental concerns, I would live no life at all). I have a healthy mistrust for people who talk about the value of multi-billion pound procurement contracts – for machinery, tax systems, computers, prison services, the police, the DWP – all the machinery of enforcement – yet who argue about the cost to the taxpayer of benefits, the need to incentivise the work of the poor, and so on.
So there has been progress, in many ways, but which appears to be undermined by a continual agenda suggesting that the needs of adults with impairments, the needs of asylum seekers and single parents in low-paid work should take second place to the needs of larger, more prestigious projects. I disagree. I feel that the welfare state, as it was conceived, was designed specifically to help care for those in our society who find themselves down on their luck, vulnerable or unable to escape from difficult circumstances; because it was recognised that every person’s contribution is valuable. If we lose that awarenesss, I believe we all lose a great deal.
I was casting around for blog topics, and my husband asked, “Have the lives of adults with impairments improved?” Which set me thinking.
Compared to, say, forty years ago, there is now a much more comprehensive approach to inclusion, socially and in the work place, for all of us, whatever our particular circumstances.
There are laws in place, for example the Equality Act 2010, successor to the Disability Discrimination Act. I’m glad to see that at last, equality is finally established as the founding principle, replacing a piece-meal approach to abolishing discrimination but only in certain aspects – race, gender, social orientation… – and I heave a sigh of relief that we no longer have to doggedly list and recall at crucial moments all those aspects of discrimination that are illegal and those that are still to be tolerated (and the reasons why that might be so).
Things have also improved, in the sense that adults with challenges of all sorts are more willing to talk about them, campaign around them and not put up with being side-lined or fobbed off with pathetic excuses. How many of us remember being told that, because of our impairments, we were not allowed to go to the cinema, or on a boat ride, because to do these things would potentially be hazardous for us and for other people. Well, of course they might be; life has obvious hazards. Though the language of discrimination still creeps in occasionally, we no longer accept that we should be left to moulder ‘safely’ at the quayside while everyone else is laughing on the cruise.
So there is a legal framework, which in turn fosters social and work-place inclusion, and offers those with extra challenges some way to seek clarification and redress as well as more confidence to raise questions about their inclusion and participation.
As a walked downstairs and into the living-room, I felt myself floating. Arthur was waiting peacefully, seated on the sofa with his eyes shut and his long legs stretched out in front of him crossed at the ankles. For a moment, I was unsure what to do. Before I could think about it, I folded my arms over his shoulders and kissed the top of his head briefly, then walked self-consciously around the sofa and sat beside him.
“Thank you.” His words startled me.
“Thank you for what?” I couldn’t help saying.
“For being here and for being so normal.” The words were a surprise, but I didn’t argue. I sat quietly for a few minutes.
“Would you like a cup of tea?” I asked into the silence.
“No… Not really.”
“Anything else?” I waited for the bomb to drop.
“At the moment, I’m just fine and comfortable, thank you.” A pause, and then Arthur sat up, broke into a sudden grin and winked at me, “Got you, didn’t I? Admit it, you were expecting me to say…”
No! No, I wasn’t…”
“But a little?”
“Oh yes,” I sat closer and snuggled into his chest. “More than a little, actually.”
“I can see that in your eyes. You are very honest, you know, easy to read. Thank God. I have had enough of women who say one thing and mean another. You are…” He looked down at me, considering. “Refreshing. That is what you are to me, right now.” He leaned over and kissed me on the top of my head, and that stung me into sitting up. He kissed my mouth before I could look doubtful with it. Softly, ever so quietly, his lips touched mine and we tasted, we fell into the feeling of being together. The smile of our lips just kept us kissing quietly deeper, until my face was drawn with yearning and his eyes were hooded.
I breathed, getting lost in the tingling sensations that were creeping up my spine and along my arms. My body was trembling all over with suppressed longing.
“Yes.” Arthur’s body was answering mine. “It’s been too long.” He broke away and moved his arms from around me. I felt cut loose, cold.
“Pins and needles” he mumbled, and I relaxed again.
“Sorry.” I said.
“Oh, cut it out, woman! There is no need to keep saying sorry. What did you do? Kill the Pope’s dog?” There was real annoyance behind the joke, so I smiled.
“Neither of us has to go to work in the morning…” Arthur kissed me again. “But…” I was beginning to fear that word, “Maybe I should go?”
“Can we just…?” I pulled him back to me and kissed him. I needed to feel that connection again, fearing it might become lost behind the politeness of two strangers who were becoming lovers, unsure of the next steps.
“Yes, of course.” His last words were lost as we embraced. This time there was no mistaking our urgency becoming stronger, more pressing. Our mouths met and then touched cheeks, foreheads, tracing the contours of chins and necks. Arthur’s light touch on my throat traced a line down to my chest, and something inside me exploded. I could feel the warmth in my solar plexus, spreading through my stomach and up to my heart. We were very quiet, focused on meeting, connecting and understanding. To his whispered question, “Shall I go on?” I could only nod and pull him closer.
We kissed, going everywhere, gently exploring. I peeled off my top and trousers but did not want to stay on the sofa. Arthur seemed to understand and was content just to hold me as we kissed each other’s bodies endlessly and held on. “Do you like that?” he would whisper. “Yes, more like that…” Watching his smiles and certainty, I grew bolder. And to my nods, mute with longing, he would smile and oblige me with tender, light touches. I could feel my body bucking, ever so gently beneath his teasing.
“You have been so patient, haven’t you, Marian?”
“Shall we go to bed?” I could not help asking.
“Are you sure? Is Elaine a good sleeper?”
“Yes, always has been.”
“Okay, then. Let’s go.” We tiptoed, carefully avoiding the creaking dip in the middle of the third stair. In the darkness I closed the curtains as Arthur dived beneath the duvet. We spoke little, but as Arthur pulled off his shirt my desire grew until I felt myself floating. Because he was so honest with me, I felt my shyness melting. Beneath the covers we warmed, hugging tightly, high on joy and freedom. The intense pleasure of being held, the joy of sharing skin to skin, melted years of reserve. Quietly, we found ourselves silently sharing our discoveries as the pleasure grew. While Arthur kissed my face, he moved his hands in slow, tender circles over my stomach until I was ablaze with longing.
We moved, and Arthur had his legs on mine, holding down my ankles, as I started to say, “I’m so-” but with an arch smile, he sealed my mouth with a kiss. He knew, my desire was so intense, that he looked deep into my eyes and saw. I felt completely understood. His knowing finally melted my inhibition. I was flooded with desire, and more kept coming, more waves pulsed out and down my body. He moved in and through me and I moved with him. We said little, which made the tension almost unbearable. Arthur was so good at knowing from a look. He wanted me, he needed that, and I felt myself responding without any thought. I surrendered completely to the feeling of being known and loved, until Arthur finally climaxed and joyful with release, I followed with another peak, then another. We both clung, stretched taut and breathing fast, taking gasping breaths. Waiting suspended, the sexual release was met with an emotional one, as we wept for our private losses, and the relief of joining them to discover something new.
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?
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.
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.
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.
February 25, 2019
Featured today on Kathy Pooler’s blog
Fran Macilvey 'Trapped: My Life with Cerebral Palsy', cerebral palsy, Fran Macilvey, Fran's School of Hard Knocks, Happiness Matters, Memoir 0 Comments
Featured today on Kathy Pooler’s blog.
Today I’m delighted to feature on Kathy Pooler’s blog, writing about my books, in particular how and why I wrote my memoir, Trapped: My Life with Cerebral Palsy.
I’m so grateful to Kathy for publishing my article on her website today.
Writing Trapped must rank as one of the hardest things I’ve done. Yet, it was the endurance test that ultimately saved my life and gave me a new sense of purpose, as well as countless opportunities to do things differently and see the world through fresh eyes. Having achieved that, no other test has seemed impossible, or anything like as daunting.
I do sincerely hope that my experiences with managing life challenges through contemplation, reading and writing will inspire others to take courage with their own personal mountains. We all have challenges to overcome, some expected, others that arrive like a cold whirlwind out of a clear blue sky. Whether we realise it or not, and whether or not we want to believe it, we can find ways to be happy, whatever life brings us.
That I have been enabled to find a path to peace through my writing makes me grateful beyond words.
Please do pop in and support Kathy if you can.
Thanks for reading and sharing.
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