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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May 5, 2019
Unexpected reading
Fran Macilvey 'Trapped: My Life with Cerebral Palsy', Fran's School of Hard Knocks, Happiness Matters, Memoir 2 Comments
Unexpected reading
Dusting a crammed shelf next to my desk, my working copy of Trapped falls to the floor and I pick it up and open it.
It is unexpected reading; and I am scared, not because, as used to be the case, I am anxious about finding grammar glitches and typos, but because I wonder now, how I will feel about the writing, and the experiences after so long. Have they finally left me and gone away to a dignified retirement? Am I encouraged by what I read?
I’m baffled and bemused to discover that it still makes my eyes water; and I notice in the midst of what was always an appeal for help, the acres of time I wasted. Even as an adolescent, I was aware of that wasted time and regretted it; but now, I think, Why did I accept it? How the Hell did I tolerate it?
The answer, like these questions that have sat up and beg me to pay attention, lies I suspect in the discipline and open-ness to truth that is forced on me by getting older. There is something about being young, that feeling of having all the time in the world, that gives us permission to sit and wait. That sense of timelessness which we can squander is often characterised as the joyous, endless horizon of youth, the notion that anything is possible. And so it is, providing we take the chance to do something. Or else, it can become a field of endless, formless regrets.
Inevitably, the field narrows as we get older, until our demise ceases to be a remote probability and becomes an urgent motivator: It’s got to be now or never! While young, I accepted my situation because I could see no way to get out of it, and I tolerated it, because there was no choice. I had neither the type of Georgette Heyer character nor the energy to defy expectations by leaping up and eloping. Nor, in fact, did I have any idea what I would rather do. Oh, yes, of course I knew I wanted to get away, and dreaming of escape has always been a favourite fantasy, but after the escape, what then? That was always the stumbling block.
Thanks for reading.
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