cerebral palsy

January 27, 2014

Innocence is Precious

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Innocence is precious.

“Hundreds of Benefits Claimants are fined every day” is the headline in a recent paper, revealing a dramatic increase in the number of sanctions issued to those who fail to turn up for DWP interviews or to attend to the other requirements of finding a job. You had no money to phone the jobcentre because your mobile phone ran out of credit because you were sanctioned last week? Too bad, here is another sanction to reward you for your efforts….. Sanctions appear to be levied for the strangest reasons, including, not being able to attend two appointments at the same time, and waiting to start a new job.

The current belief that underpins the increase in sanctions and the general tightening of belts is one that screams, “Scroungers, wasters, the lot of them” and so, with that assumption firmly in place, automatically the collective mind charged with administering benefits goes on the lookout for evidence to support that belief. Subconsciously, evidence is found which bolsters that assumption, as well as a whole raft of other assumptions, which are naturally filtered and selective.

The same process happens when we go around saying to ourselves, “I feel sick”. We look for any evidence that vindicates our belief; and the difficulty or discomfort we create in passing is thus not seen as regrettable, but as inevitable.

In that sense, the fact that there has been a huge increase in the number of sanctions being levied against the poorest and most desperate merely bolsters the underlying belief that there are lots of chancers out there, who will do anything to fiddle the system. This is just the tip of the ice-berg, we are just beginning to uncover the scale of the deception…. The presumption of innocence is very precious, yet seems to be under attack in all quarters. The Scottish Parliament seems bent on abolishing the doctrine of corroboration in Scotland too, so that more guilty people will get the justice they deserve.

Innocent people deserve a break too.

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January 15, 2014

Feet First

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Feet First

I’ve just had a lovely visit from a friend, who was explaining that she recently visited a podiatrist. Ok, chiropodist. We were animatedly discussing how our feet, and the way we walk, affects our whole body, our calves, our back, our necks…which set me thinking about my routinely dreadful posture, my shambling and all the compromises I  muddle through. These days, I walk so seldom that I can feel my whole body stiffening up, in places I didn’t know could be stiff. So, just to keep me a bit flexible, I think I shall be going swimming more often. So far, this year, my resolution to swim every day – or, at least five times a week, timetables permitting – seems to be holding. Monday, Tuesday and today, three in a row.

Apparently, I have one leg which is an inch or so shorter than the other. That might make anyone lope a bit, I suppose. I use an elbow crutch outside to help with balance. I also wear a certain brand of shoes which make me wobble. But these shoes, which are expensive, top-of-the-range types, are so comfortable for my back, my hips and my knees (except when I wobble too far and fall, in which case, everything hurts) that I persist with them. My legs, feet and knees have endured years of unusual wear and tear, so these soft, sturdy shoes are valuable shock absorbers.

I was wondering what would happen if I telephoned the chiropodist and asked to make an appointment. Would she say there was nothing she could do to help me, that my problems were too complex? I suspect so, though I have rarely had the luxury of an independent or sympathetic assessment of my compromises. There is the chance that another, careful professional look-see would yield a handful of helpful answers, even if the outcome was a fresh list of problems that I might need to watch out for. I don’t mind being made aware, so long as I can keep my body active. On the other hand, I have sort of worked out what works and what causes real problems. I am also reluctant to tell the whole story, again, to yet another professional. Should I just phone up and see how far I get, or would a dignified silence be best? Only time will tell.

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December 12, 2013

Knock her back

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Knock her back

It is a still, bright morning so I decide to get a quick breath of air before breakfast. As I carry more recycling outside to my box awaiting the kerbside collection, the air around me smells sweet and fresh. While negotiating our high front step and smiling into the low sun, I twist my knee rather painfully, which takes me by surprise. This seems to be a new problem. Waiting to admire the cool morning quietness, I tumble backwards and land with a squawk in the patch of tidied-for-winter dwarf primroses that our downstairs neighbour carefully plants each year to catch some warmth against the brick wall. I hope she does not see me and conclude I am being careless.

Later in the day, while I am getting out of my car in town, I trip over an ancient paving stone and fall again, this time grazing my forearm. If you care to look, you will notice that our forearms are not particularly well padded. But that pain is nothing compared to the sheer agony of the painful knock to my left hip which follows, an impact that goes right in to the bone but leaves no external marks, only, after a few days, spectacular bruising. That agony is so intense that, mute and praying, I am frozen into disbelief, waiting to regain my breath and some small enthusiasm for movement. I walk rather gingerly for a while afterwards.

Falling is fairly routine, especially outside on unfamiliar ground. I wonder if the damage inflicted by two sudden and unpredictable falls – sore feet, sore neck, aching joints and painful wrists – is a fair price for the freedom of getting out and about.

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 form and a cursory examination on the day, little account is taken of impacts which spread like spores through the body after the main event. If our able-bodied colleagues who examine us fell 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 it seems that we are to be punished with questions asking whether we can sit, stand, walk twenty metres and so on – how little we can manage before we surrender the unequal struggle and sign ourselves up for twenty-four /seven incapacity.

The most frustrating things about disability are that it comes with extra pain, with extra humiliation 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 work place 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 workplace 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 be like other people and then find our efforts rewarded with misunderstandings, when what we would most value is a fair assessment of the costs of living 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. That sort of interest is mere prurience. 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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December 4, 2013

Welcome to my blog

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Welcome to my blog

A new day, a new post, but what qualifies me to write it? What particular something do I invite you to share with me today? Good question. I am a wife, and the delighted mother of a daughter with an insatiable fondness for her new i-pad. We all live in a light and airy apartment. Sometimes I wish we had an extra room which my husband and I could use as an office, instead of doing all our work in the living room which doubles as a play room, competing with the television or Jessie J singing her heart out. I love JJ, but sometimes, a bit of peace and quiet is as welcome. I have not yet mastered the art of working with earphones. I like to feel connected to the world.

But I digress. If I told you that Spirit invites me to write and patiently waits for me to pluck up the courage, you would probably not believe me, so I shall offer some background to explain a little about why I write. My earlier life as an employee was a highbrow version of hell, so I left that to burn without my help and moved gratefully back into the cool shadows of full-time domesticity. Wifedom is rather interesting: it provokes continual challenges, which I like to think of as “opportunities for growth and maturing”. So does motherhood, though the kind of challenges we are all thinking about – nurture, social diarist and all round fixer – seem to be getting easier as I get older. Has anyone suggested to you that growing old is a pleasure? Well, I think it is the best kept secret in the entire universe, but that is another story. I have digressed again.

I wrote a book and posted a very immature draft of it on a writers’ social network. It did rather well, so I thought, “maybe I can write after all”. Now, I have a wonderful literary agent who clearly agrees, and my book is due to be published in March next year. I still feel as if I am dreaming. I have to pinch myself every day. I’m a bit cautious, too, wondering if she might phone me up and say, “Actually, I was just having a laugh. It has been great knowing you….”

I am not used to wonderful things happening to me, you see. Apart from the love of an ideal man, my darling daughter and a handful of generous friends whose thoughtfulness regularly makes me cry, my life has been a hard walk, up until now. I made it that way, although it was not all my fault. For example, after ten years off the road, I have recently leased a brand new car through “Motability” and my life has been transformed because I don’t have to drag myself everywhere on the bus or shell out for expensive taxis. Because of the recent changes in the welfare system, I face the possibility of my freedom being taken away….what will that do to my life? And how will the government redeploy tens of thousands of second-hand cars, most of them adapted for disabled driving? Having a car opens up the world to me in ways that I never dreamed were possible. I qualify to receive a car because I have cerebral palsy.

But I digress. Or maybe that is the point. The way I see life is often not the way you will see it. There are issues here that could be explored. And, if the government wants to take my car away and send it to a car auction, I had better make a living and think about getting a replacement. Nowadays, a life without wheels feels about as lonely and impossible as a life without legs. I have legs, but they don’t do what I would like them to. And though getting older does not inevitably mean a slide into arthritic decrepitude, there are times when the sheer number of potential hazards and compromises, the quantity and variety of pains and accidents I might one day endure, feels overwhelming.

At the age of forty-eight, I am just beginning to understand fully, how wonderful life can be, when we let it be. That is what I want to share with you, so that together, we can confound the expectation that growing older means social isolation, invisibility and pain. I want us to feel optimistic, to feel joyful about growing older. I hope you agree with me about that.

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