Deborah Orr: If we really want to help disabled people, we could begin by simply seeing them

The unrelenting rain of bad news about the way society treats the disabled is turning into a deluge
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The Independent Online

There was a horrible case in Cardiff Crown Court this week, distinctive because its horror was so very, very banal. An NHS Trust had been taken to court over the treatment of Mary Purnell, a 93-year-old suffering from dementia. She had been dropped off by an ambulance crew after a visit to a day-care centre. They had found a key under the mat, settled her in a chair, and then continued with other drop-offs.

They ignored another passenger's protests that Ms Purnell had been left at a strange house, until they got to her real home, and her daughter confirmed that her mother wasn't in the vehicle. Realising their mistake, they returned to the other address, where they found Ms Purnell lying in the back garden with a broken leg. She never did get home, and died in hospital five weeks later of bronchial pneumonia and leukaemia.

The most telling detail in this sad modern tale, I think, is the fact that another adult attempted to act as an advocate for Ms Purnell, but was ignored. Why? Is it because she too was disabled, and therefore intrinsically unreliable, lesser, expendable, without knowledge or sense? Can this episode be said to have displayed the attitude that many of those who routinely come up against it prefer to call "disablism"?

Dave Morris, senior policy advisor to the Mayor of London on disability, describes disablism thus: "As pernicious as racism, as sexism, as homophobia, as ageism, it is about ... the fact that society does not want us to be there." He, like many people working and campaigning for disabled rights, wants society to start measuring disablism effectively, so that it can be defined, understood and challenged.

I know there's a little bit of many people that wants simply to groan: "Oh no, not another ism, not another opportunity for the priggish self-righteous to berate their fellows and the aggressively politically correct to start concocting new illegal stuff. Not another oppressed minority with another set of special needs. Enough already. No more."

Yet tempting as such wilful dismissal might be, it is just not an option. One could be forgiven for vaguely believing that the disabled have never been as cosseted as they are today. Government policy champions inclusion, seeking to close hated "special schools" and integrate disabled children into mainstream education. Disabled icons such as Alison Lapper have personal assistants to help them with the tasks they cannot physically complete in order to achieve independence and equality. The able-bodied are constantly slipping into luxuriously empty disabled lavatories, musing as they wash their hands on whether to come up with a bantering remark if they find a disgruntled queue of legitimate users waiting outside.

Yet, at the same time, the unrelenting rain of bad news about the way society treats those who for reasons of physical or mental anomaly rely to some extent on the help of others is turning into a deluge. There are occasionally big set pieces, like the present row over whether a 17-month old boy with paralysis should continue to be ventilated.

But there is a constant drip of rather less philosophically exciting controversy as well - over the community care charge of up to £200 a week that the working disabled have to pay, or over the tendency in some NHS trusts, highlighted by Panorama, to make the elderly sell their properties to pay for care-home fees that the state should meet. Last week, via the Government's poverty audit, we learned that a quarter of the children designated by the Government to be living in poverty in Britain are the children of the disabled.

Behind these muted headlines are unbelievable facts: can it really be true that in this day and age, for example, disabled people living in residential care are allowed to keep only £20 of their wages each week, no matter what they earn? That half of disabled adults have incomes below the poverty threshold? That nearly half of parents with learning disabilities end up having their children taken from them? Or that 68 per cent of polling stations in this great democracy of ours are inaccessible to wheelchair users?

At a conference last week organised by the cerebral palsy charity Scope, a young comedian called Laurence Clark told of how difficult it had been at his special school to get across to his carers that he was intellectually competent. That achieved, he was urged into computing so that he could "work at home, never go out, and make loads of money". By the time he got his doctorate, he realised that he was "an outgoing, gregarious person, trapped in the body of a computer scientist", and started doing comedy instead. "For the disabled," he says, "computing is the new basket weaving."

The assumption made on Clark's behalf was that he would see the sense in suppressing his social needs in order to "fit in" without troubling anyone. It's an insidious kind of prejudice, this one, because its perpetrators believe that they are acting for the best. What Clark describes is a recurring problem, whereby people assume disability confers a desire to be invisible, simply as an act of transference. It's the same difficulty, in a very different form, that was displayed in the hospital bus carrying Ms Purnell, where the crew assumed that interlocution with a disabled passenger was a waste of time.

It may be safe to assume that no decent human being would be anything but keen to rid themselves of such a bad and discriminatory habit. Yet even this clearly dreadful manifestation of disablism is not uncontroversial. The articulate disabled, paradoxically, are sometimes accused by the parents and carers of the profoundly disabled of committing the same offence themselves - concerning themselves too much with achieving the equality and independent living that is a reasonable goal for them and not enough with supporting the dependence and lifetime care of people for whom this isn't possible.

Ideally, one would aim to cater to both parties. Yet again and again, for those thwarted in their desire for independent living, and those struggling to care for entirely dependent relatives, funding turns out to be an obstacle nearly as great as prejudice.

At present, the Government's well-meaning commitment to tackling disablism has much the same focus as its drives to tackles most other social problems. The key, says the Government, is work. An avalanche of initiatives designed to get the disabled into paid employment are already blundering down the slopes.

They are welcome. Yet without providing the full support that the disabled need to get to work and be able to sustain employment, these initiatives can only have very limited success. Maybe society simply has first to understand that the disabled must be visible and present, instead of hidden and discreet. And that this, the most simple act of inclusion, would be money well spent.

d.orr@independent.co.uk

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