‘Trapped: My Life with Cerebral Palsy’

A Life of Compromise

Despite all the fancy words, labels and categories, it seems that no-one really understands cerebral palsy, though its effects show up in many different ways. None is predictable, linear or without added complications which in themselves can be unexpected and disabling.

For example, I can get myself a short distance from A to B on a good day, provided I am used to the terrain and provided there is not too much wind or rain about, both of which are hard to predict. Why, you might ask, does weather make such a difference? Well, where I live, gusts of wind could easily blow me over, which is obvious enough. So to help steady myself, I walk with an elbow crutch. Otherwise, I wobble and fall over at the drop of a hat. Indeed it is a miracle that, thus far, I have not been run over by a bus. My angels are kept very active ensuring I come to no harm.

The rain, which is a frequent visitor in these parts, makes the rubber stopper at the end of my walking aid slip and slide, so that a wet pavement becomes rather like an ice-rink. In the rain, using my walking aid is, all of a sudden, an unexpected and major problem. Falling full length with an arm outstretched may look elegant but it is painful, an agony hardly deserved because I happened to lean on an elbow crutch on a wet patch at precisely the wrong moment. At times, a walking aid is a real liability. But the alternatives are not attractive either. I don’t wish to remain cloistered indoors whenever there is rain, and why should I? I have to get a life, or so David Cameron and George Osborne keep telling me.

Because I keep trying, because I am as stubborn as an ox, and because I have learned not to cry too loudly when I fall and bang my hip – God, the agony! – I do have a life, which I have hewn from the unrelenting cliff-face of trial, error, compromise and heartache. I try to take the best from being the unusual one who takes twenty minutes instead of five, to walk to the bus-stop. I put a brave face on chronic arthritis, the debilitating pain that invades me when I eat too many potatoes, drink orange juice or eat cheese two days in a row. I have learned to enjoy drinking barley coffee instead of the real McCoy and feign disinterest in patisserie because both of these reduce me to a screaming wreck. I go swimming to keep fit and I walk as much as I can, precisely so that I may counter accusations that I am a beneficiary of a benefits system that perpetuates laziness and complacency.

Now the new PIP assessments have arrived, asking a series of questions which require me to demonstrate exactly what I can and cannot do. That varies, but, for the sake of argument, and assuming that the questions are fair and can be answered easily, does staggering dangerously count as walking? How do I prove that my whole life is a tightrope, that whatever I physically achieve is the outcome of painful deliberation? More fundamentally, why should I have to lay open the embarrassing compromises of my life to public scrutiny? Do we motivate disabled people by demoralising them? By asking about toileting needs and whether we can stand or walk? These are precisely the wrong sorts of tests to be setting, if we want to encourage our differently-abled citizens to leave their homes and join the wider community. Questions about night-time supervision, medication and whether someone is socially isolated enough by their disability to qualify to receive certain state benefits, are at best sensitive issues, and at worst, likely to send vulnerable claimants down the last road to hell. How many claimants, on being reassessed, will feel so put down that they attempt suicide, rather than face the continual stigma of being told, “We saw you going to put out the rubbish, so obviously, you can manage.”

If a citizen is bequeathed a life-altering condition which is not in dispute; and where it is clear that this condition leads to increased costs not encountered by able-bodied contemporaries, the increased costs of living with disability are the only legitimate concern of government charged with administering any benefit which is avowedly in place to cushion the blow of financial inequality. If the intention of the new Personal Independence Payment is to enable and empower independence, then why does someone who can manage his or her condition to enable their independence find themselves penalised?

Since the harshness of the current descriptors suggests that a successful award depends on complete incapacity of one sort or another, clearly the intention is not to motivate or empower, or even to compensate for financial burdens, but to save money by reducing the number of claimants to those the State decides are profoundly incapacitated and least likely to achieve independent living. The severity of the new assessment works to reinforce a stereotype that a recipient of this state largesse is irretrievably pitiable. What a shame, then, that it is called Personal Independence Payment. Clearly, it is nothing of the kind.

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