The Sunday Times, Uncategorized

November 30th, 2008

Parents of a Down’s child must make painful choices

Eugenics is one of those knock-down words used to silence argument. It was used several times last week, in radio discussions and articles about women choosing to give birth to babies with Down’s syndrome. The subject came up partly as advance publicity for a Sky Real Lives television documentary this Wednesday about a heroic young woman who adopted seven babies with Down’s, whose mothers had rejected them. There was also a BBC news story last week suggesting that more women these days are knowingly choosing to give birth to babies with Down’s. In fact the news story was misleading. Actually, the proportion of pregnant women who choose to abort their foetuses when antenatal screening has detected Down’s syndrome has remained constant since screening started, at about 91%. Also the number of Down’s abortions has tripled since 1989. The total number of babies born with Down’s each year has indeed increased since then, but not by much. This small increase may be due in part to the fact that many women have children when they are much older these days, and some of them refuse antenatal screening. This misleading news story provoked an impassioned response. Several parents of babies and children with Down’s, and representatives of pressure groups, said publicly how much love and happiness such children bring, despite any “challenges”, and how they can, with support, live happy, independent lives. More or less disguised was a strong tone of moral disapproval of anyone who feels that the birth of a Down’s baby is a misfortune, to be avoided if possible. Hardly anyone now dares to say so. The word “eugenics” is often used by Down’s lobbyists to make the nasty suggestion that people who think it is right to abort a foetus with a Down’s diagnosis are as bad as Nazis. This is argument by abuse. I protest out of long personal experience. Someone close to me in our family has a learning disability, which has been a handicap and a sorrow to her, and my lifelong experience of children and adults with learning disabilities, including many with Down’s, as they have grown older has given me a different perspective. I am convinced that it is a grave misfortune for babies to be born with Down’s or any comparably serious syndrome. It’s a misfortune for their parents and their siblings as well. Sad observations over decades have convinced me: a damaged baby is a damaged family, even now. I resent the moral condescension of those who claim that people who think like me are not only wrong but hateful; there have been vicious attacks on me in the blogosphere by disability-lobby extremists. My point of view does not make me a heartless eugenicist. For one thing I do not think that any woman should be pressed, for any reason, to have an abortion. To do so would be wrong. She must be free to choose and free to make a bad choice. What’s more, I firmly believe that people with disabilities should get all possible help and understanding to lead fulfilling lives, from society in general and from the taxpayer. My belief that certain foetuses would be better not coming to term has nothing, logically, to do with my belief that everything possible should be done to help babies who do come to term and are born among us to share our imperfect world. There are some strange contradictions surrounding the question of abortion. People who reject abortion as always wrong are consistent and one cannot argue with them. But anyone who thinks abortion is acceptable under some circumstances, and who yet disapproves of what’s emotionally seen as “eugenic” abortion, is in an untenable position. After all, people accept abortion for certain “social reasons”, and what more powerful “social reason” could there be for an abortion than the virtual certainty that the foetus would be condemned to a life of frustration, disappointment, dependence, serious illness and poverty, to the great sorrow and hardship of its family? I listen with amazement and sadness to new parents of Down’s babies describing a rosy future of love, acceptance and independence (with “support”, of course). The truth is, though people are too compassionate to point it out, that support is in short supply and is expensive. With or without it, Down’s children face a future blighted by low or very low intelligence and by a high risk of heart defects (30%-50%), intestinal malformation, leukaemia, kidney and thyroid disease, poor hearing and vision and early-onset Alzheimer’s (25% as opposed to the normal 6%), as well as increased chances of diabetes and seizure disorders, including impaired executive function. In a hyper-sexualised culture that worships bodily perfection, beauty and sexual success, adult life is also bound to be painful for people with Down’s. When they are babies and children, that may not be a problem. What happens, though, when the Down’s child becomes a teenager, interested in how he or she looks and keen to discover love and sex? It is all too predictable – a growing sense of sexual rejection. Any babies born will be taken away, probably rightly. It is heartrending. In every other way the doors to adult life will seem all but closed, despite everyone’s best efforts to push them open. Without a great deal of help, a person with Down’s will find it hard to get and keep a job. At a time of recession, with social services understaffed and underfunded, there will be little money for social care. Even now there is nowhere near enough money to help everyone with learning disabilities lead a full and semi-independent life. Then comes the hardest question of all – what happens when the parents die? The best of social services can do only so much, and it is never enough. Loving brothers and sisters may help, and help a lot; they may well have to, until they die, though they themselves did not choose to take on such a time-consuming, lifelong responsibility. Most pregnant women instinctively understand all this. That’s why nearly all choose abortion. Those who choose differently should understand they are choosing hardship, perhaps great hardship, for their child and for their other children. This has nothing to do with eugenics and everything to do with the painful complexity of moral choices.