The Sunday Times

March 27th, 2011

Our immoral pretence at an ordinary life for people like Josie

Agood society should surely be judged by how it treats its most vulnerable citizens. Last week a small charity in the south of England was much taken aback by a request from a woman with a learning disability for money to pay off her debts.

According to her care worker, who wrote the request, her learning disability means that she cannot fully understand her finances or how to manage them; nor can she understand the implications of paying by credit card and of failing to keep payments up to date. Result, as Mr Micawber would have said, misery.

It is quite astonishing to me that a person with a learning disability should ever be put in a position where she faces all the terrible anxieties and hardships of debt. Protecting such a person from all of that should be one of the first duties of care of a good society.

That might be difficult in some cases, but this person — she could be called Josie — has a professional support worker who is employed by a learning disabilities charity, and you might imagine, unless you knew about current theories on learning disability, that such support workers would gently steer such people away from credit cards and protect them from running up debts. Not necessarily, it seems.

Josie has a serious problem: she has an outstanding debt with a well-known retailer of more than £1,000 and another debt owed to a utilities company. The retailer is threatening to take her to court, where she would face a fine on top of her debt. The utilities company is deducting money from Josie’s benefits. These — her only income — add up to £132 a week, about half of which is employment and support allowance and half is disability living allowance.

A few months ago Josie suffered a bad injury in an accident, and she has been living in a respite centre. Her normal weekly needs are only just covered by her income. She has no hope of ever paying off her debts without asking for charity.

It beggars belief that such a person with learning difficulties can be given a credit card and allowed to fall into debt. If this is commonplace, then policy makers need to do some serious rethinking; because if it is commonplace, then Josie and people like her are victims of political correctness, for lack of a better phrase. I mean a refusal, in the name of an equalities and inclusion agenda, to acknowledge the serious problems caused by learning disabilities and the way these problems vary unequally from person to person. It is a high-minded and wrong-headed state of denial.

People in the grip of this mindset argue that adults with learning disabilities (LDs) should be able to do everything normal people do — in fact many activists will be angered by my use of the word “normal”. They, including leaders in the field such as Mencap, firmly believe that people with LDs — once known as mental handicaps — should lead normal, independent lives and should marry, become parents, vote, sit on juries, become trustees, sign mortgages and have bank accounts like everyone else. This view is practically orthodox now.

Such beliefs have a long history, starting in America, where notions of normalisation were introduced by Dr Wolf Wolfensberger in the 1960s. Wolfensberger was passionately concerned that people with learning disabilities were undervalued and heartlessly excluded from normal life. He was entirely right: such people were put aside, often quite literally, and treated as “other”, their feelings and wishes regularly ignored.

I remember meeting a middle-aged community social worker in Dublin who had once worked in a vast establishment for people with LDs. It was a hospital, although the inmates were not ill, divided into large, many-bedded wards. People didn’t even have their own underwear; it was handed out randomly after each wash. In my own childhood I remember going to see countless secluded places for adults with learning disabilities that were nothing but soulless, smelly boarding schools, and it shocked me horribly. Ideas such as Wolfensberger’s were overdue and have hugely influenced public policy, both in the United States and here.

Anyone who, like me, has ever loved someone with an LD must sympathise with these ideas and want that person to live as normal a life as possible and to be valued and included socially as much as possible. But the crucial word is “possible”, as Wolfensberger himself said. What’s happened is that wishful thinking and an overreaction to the bad old days have blinded many professionals to the realities of the possible. It is not possible, surely, for someone who cannot understand money or the implications of credit cards to take responsibility for her own income, least of all if her income is small (as so often is the case with people with LDs). Yet people with LDs are routinely encouraged to have bank accounts and even to employ their own care workers with their personalised budgets.

I would go further: it is not possible or right for someone with a learning disability to sit on a jury or to be a trustee, rights for which Mencap and others have campaigned. It is wishful thinking.

A learning disability means a permanent intellectual impairment. It has nothing to do with a learning difficulty, such as dyslexia, which can be put right: it is a lifelong condition. By standard definitions it means an IQ of less than 70 and problems with conceptual skills, social skills or practical skills. An IQ of 50-70 would mean a mild disability, 35-50 a moderate one and below that a severe or profound disability.

With a lot of the right support and encouragement, a person with a learning disability can lead a satisfying life and achieve all sorts of things. The determination on all sides to include them in ordinary life as far as possible can only be right: it is what lies behind the official policy of “supported living” in independent flats and houses in the community. But that determination has been developed to a fault, to impractical extremes.

For one thing, there is a shortage of money and a shortage of highly skilled support workers. The real costs of proper supported living for everyone in need would be astronomical. Even more important, some people’s disabilities are just too disabling for all such aspirations — too disabling, at least, to take on credit cards or legal agreements or difficult legal questions.

To impose such burdens on people who cannot bear them, or to encourage them to take them on, seems to me both wrong and irresponsible. Think of Josie.