The Sunday Times, Uncategorized

November 22nd, 2009

Sadly, most people with a learning disability should not have children

When my little sister was a child in the 1960s, we never said to her that she was mentally handicapped; no one in our family would ever have considered doing so. One day, though, when she was about 10, she received a visit from a social worker, as she did occasionally, perhaps because my mother was receiving money from the council, and this person left my sister in tears. “She says I’m mentally handicapped,” said my sister, sobbing. “What does that mean?” I asked, hoping the social worker had not said anything even more upsetting. “She says it means I can never get married and have children.” My sister is now, like me, a woman of a certain age although, unlike me, she has never married. We are very close, although we live two hours apart. We speak on the phone at least once a day and recently she has begun to email me as well, with help from care workers. She is usually on my mind and never more so than last Thursday, when BBC2 transmitted a documentary called Emma and Ben, about a young couple with Down’s syndrome who are deciding whether or not to get married. In the end, despite their obvious love and tenderness for each other, they decide against marriage, but they go through a lot of anguish along the way. One of Emma’s concerns is that she would not be able to cope with babies, although a care worker points out that getting married need not mean having children. Even sadder than the fading of the couple’s dreams was, to me, Emma’s constant reflection on her predicament as someone with Down’s and on the limitations that she feels, which we, the viewers, come to understand a little. Anyone who has ever been close to such a situation, or to anyone like Emma or Ben, will be moved to tears by this film. Its transmission coincides with a recent news story in Scotland about another young woman with a learning disability (LD) who very much wants to get married. Kerry Robertson, a pregnant girl of 17, fled with her fiancé from her home in Dunfermline to escape the powers of Fife social services. Local social workers made them cancel their church wedding in September, and all their plans for the flowers and the reception, on the grounds that Kerry lacks capacity, in the legal phrase, to understand the implications of getting married. They have also told Kerry they may take her baby away after birth because of her learning disability, in the baby’s interests. All these things are unspeakably difficult. You don’t need much imagination to have some idea of the shock and misery of Kerry and her fiancé, or of Emma’s anguish or of my sister’s heartbreak. I myself have had so much experience of the frustrations and hardships — as well as the happiness and achievements — of people with learning disabilities that I can never think or write on this subject without intense feeling for those concerned. So it is with a heavy heart that I say I believe that, in most cases, it is probably a mistake for people with learning disabilities to marry and have children. Every case and every person is different, of course, and in an ideal world everyone with LDs would have enough good and wise care workers to help them through all their choices in life. But this is not an ideal world, and in our real world, with its looming spending cuts, there are two glaring problems. One is the cost of care workers and another is the question of what happens to children born to a parent or parents who are intellectually impaired. It is a point of principle in the disability lobby that all people with LDs have every right to have and to keep their children, and it is indeed a universal human right. I entirely sympathise with the underlying feeling, but I believe it is all too often wrong. A senior social work manager boasted to me once that his proudest professional achievement, in line with this rights-led and inclusive philosophy, was to facilitate the marriage of two people with LDs, one of them blind, who then had two babies. When I asked what support they received, he said they needed 24-hour care, which involved three full-time trained workers on eight-hour shifts, with agency workers on top if anyone was sick. I hesitate even to try to put a cost on this. Yet in the same organisation other people with LDs were having their modest care packages cut by hard-pressed councils, while countless others were getting no care at all, desperately though they needed it. We live in a world of rationing and, with Britain’s frightening levels of debt, this is going to become ever harsher. Last week, for instance, the National Institute for Health and Clinical Excellence announced that liver cancer patients could not have a drug that might extend their lives, because it was too expensive; there are terrible choices to be made about the use of public money. Even if money were no object, there is still the problem, with parents with LDs, of their children’s development. There is a growing body of evidence (across the entire population) that children whose homes are talk-poor, whose parents can’t or don’t communicate with them well and who can’t make careful plans and boundaries for them or help them with schoolwork, are children brought up to serious distress and exclusion. It is hard enough to be an adequate parent with supposedly normal intelligence. For someone of very low intelligence it is even harder. That is presumably why so many — 50%-60% — of babies born to parents with LDs are taken away by social workers, a horrifying thing but arguably, in many cases, the least worst thing to do. People with LDs who want children are said by their advocates in pressure groups to have “learning disabilities, not loving disabilities”. I think that avoids the issue. Love is not enough, although of course love is essential. Besides, a learning disability may in some cases involve emotional problems as well, including autism and challenging behaviour, which will make loving and consistent parenthood extremely difficult. I hate to be someone who thinks social workers may be right, sometimes, in removing a child from parents with learning disabilities. I hate to be someone who thinks it is unwise and unfair to encourage people with LDs to have babies and I certainly wouldn’t attempt to stop anyone. But wishful thinking is sometimes at odds with a sense of responsibility, as I think Emma and Ben came to feel. There are some things in life that all the love you have cannot change and cannot make better.