Thursday 15 March 2018

What Life Would Be Like Today

Zoe Williams writes: 

What is a fitting tribute to Stephen Hawking? It’s probably not to ask, as John Humphrys unaccountably did, whether the “science community cut him a lot of slack because he was so desperately disabled?” A more insulting idea is hard to imagine: that you spend your life overcoming adversity to get to the top of your field, then the minute you’re dead, someone speculates that you’d never have made it without the adversity.

Instead, the question we should be asking in homage to this extraordinary man is what life would be like today for a 22-year-old, recently arriving at Cambridge for graduate studies, diagnosed with motor neurone disease. 

Well, he would have a Personal Independence Payment (PIP) assessment, and – despite the severity of the disease – would have no guarantee of being successful. Of the nearly one million people moving from Disability Living Allowance to PIP, almost half have had their payments downgraded or stopped. There is a very high error rate – 69% of appeals against the decision are successful. PIP, as the journalist Frances Ryan describes, is a “gateway benefit” to other allowances such as the carers one, so had his been refused or delayed he would have been unlikely to be able to continue his studies.

But let’s say he gets it: cuts to local authority budgets mean care packages are designed to cost as little as possible, which often isn’t compatible with maximising the independence and potential of the people who need them. Two brothers in Crewe, Ryan and Ashley Worth, who both have Duchenne muscular dystrophy, had to share one carer, which meant that Ryan couldn’t go to university. All the principles around disability provision – that the state exists to overcome the obstacles, and nobody’s life should be mapped by what they can’t do – have been quietly jettisoned by the raw reality of cuts. 

However, imagine that our 22-year-old, by some stroke of luck, is living in an affluent area and, chancing upon the right disability assessor, gets the support he needs. He would still need a wheelchair, another postcode lottery: across the UK, a quarter of people referred to wheelchair services by a GP get no equipment at all. In some areas, three-quarters are offered nothing, and have a choice between crowdfunding their equipment and being bed-bound. Hawking, of course, needed more than a wheelchair; able to communicate using only the muscles of one cheek, he used a speech-generation device, which it is impossible to imagine as routine provision from a system with so little interest in what disabled people have to say. 

Having won all these battles, our hypothetical physicist now needs the NHS to keep him alive. As Hawking wrote in this newspaper: “In my case, medical care, personal life and scientific life are all intertwined.” He was campaigning against the crisis in the health service, underfunding, privatisation, the public sector pay freeze and untenable pressures on staff. He was quite plain on this point: he could not have been the physicist he was without the medical care that he received. And, he argued, with a scientist’s rather than a health secretary’s command of the data, that that care was under sustained political attack.

He was a genius and a visionary; he had determination and stoicism in superhuman amounts, and arguably nothing so tawdry as bureaucracy could have stood between him and his discoveries. But it is hard to imagine those qualities, abundant as they were, surviving in a world where fighting for what you need to leave the house is itself a full-time job. Genius isn’t a freak event: it’s something we all build together on the principle that human potential is precious and infinite; or all snuff out together, having ditched that principle.

She also makes important points about London and Russia, and about free school meals.

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