‘Trapped: My Life with Cerebral Palsy’

Achievements in small steps

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.

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Different ways of doing things

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…

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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.

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