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In Praise of Downs Syndrome

Catherine Slater
Based on an article that appeared in Westminster Mencap's Newsletter Feedback, August 1994 and revised 2002
  Reprinted with the permission of the author
Copyright © 1994, 2002 Catherine Slater

I wrote this article in response to the then new screening test developed by Dr. Soothill of University College Hospital, London. I believe that then, as now medical research seems to be concentrating its resources not on preventing babies from being born with a disability but on preventing babies with a disability from being born which is quite different. The belief is that having Down's Syndrome is a capital offence-if you are unborn. In China, it is taken one step further with disabled children being killed at birth, while in Nazi Germany people with Downs Syndrome were executed. I do not intend to discuss the arguments about abortion in general in this article, because most people have strong views about it based on their personal principles. I am only concerned with the arguments used to justify the abortion of babies with Downs Syndrome.
Before arguing the case for the defense, let me give the three reasons why people attempt to justify termination for Downs Syndrome. The first is that people with high support needs are expensive to the tax payer, the second is that having a disability means you have a miserable life, and the third is that having a disabled child is an intolerable burden for the family.

Far too expensive
The financial argument was put forward in "An economic appraisal of screening for Down's Syndrome in Pregnancy using maternal age and serum alpha fetoprotein concentration" in the Journal of Science Society and Medicine, Vol. 24, No. 9, 1987. This referred to work done at Bart's Hospital and examined the benefits if the screening programme were to be extended. "The researchers costed their screening method and estimated that it costs 38000 pounds (at 1987 rates) to avoid one Down's baby." The cost of detecting and terminating each fetus would be 5614 pounds. The lifetime costs of caring for a child with Downs Syndrome were estimated to be 120,000 pounds.
As the mother of a daughter with Down's Syndrome, I find these remarks very offensive-no human being should have a price tag. The calculations which produced the figure of 120,000 are questionable and suspect. A lot of assumptions were made. I will give just three examples. Firstly, it assumed a situation of life-long dependency, where the person concerned would never pay taxes, never earn a living and never contribute in any way to society. The article states "the individual with Downs Syndrome are assumed to have no financial output in adult life". The costs also include unrealistic assumptions. For instance, it assumes that the child would have a home liaison teacher 40 times a year from ages 1 to 4, and an assumption that all children would attend special schools. Even in the 1980's children with Downs Syndrome were beginning to attend mainstream schools and the upward trend has continued. It assumed loss of parental income an over consumption of goods and services relating to their mental handicap and the assumption that they would all need nursing care for dementia when the reached the age of 45. These all regarded the child with Downs Syndrome as a drain on the exchequer. However how would the sum of bringing up a child with Downs Syndrome compare with the costs of sending a child to Eton and then to Oxbridge, then entering a profession like law or medicine which all would require major outlay from their parents and from taxpayers. Yet this may well have been the costs of bringing up some of the consultants who did this research!

Genetic Screening
Down's Syndrome is only one of the many conditions for which pre-natal screening is offered. Many conditions which previously led to an early death have now got far more positive prognoses, yet people are still screened and abortion is still offered for muscular dystrophy, haemophilia, sickle cell disease, spina bifida and many other genetic disorders where there is treatment, support and other life-saving or life improving treatments available.
Downs Syndrome in itself is neither life threatening, painful or a disease. Some children have cardiac, respiratory or digestive problems which can be alleviated or cured by medical intervention, and the majority have the potential to lead long and healthy lives. People with Down's Syndrome should never be denied the right to life. We also need to be aware that they are individual human beings first, not specimens with a genetic anomaly. They are often described in medical textbooks as patients and in social services as clients, but they are People First, and we must get away from the medical model of disability which concentrates on the impairment, and concentrate on the social model.

Feeling Positive
The third argument, the one of burden to the family is a more complex argument. Of course, to be told that your baby has Down's Syndrome comes as a blow and a disappointment. Parents speak about grieving for the child they thought they would have, and of uncertainty and worry about how they will cope. However after the initial shock, most parents accept, then love, then enjoy their babies. New parents need practical help, advice, support and the opportunity to meet other parents, whether their child is disabled or not. The extra advice, information and support that parents of children with Downs Syndrome need is not expensive or difficult to give. As parents begin to enjoy their child, they can begin to have confidence in themselves as parents, and as the child grows up and begins to feel positive about him/herself. It would be unrealistic if I were to ignore the fact that sometimes circumstances cause families to give their babies up for adoption, but many families who adopt one child with Downs Syndrome go on to adopt a second or a third. Some children have additional disabilities like autism, brain damage or cerebral palsy and in such cases parents need even more support and practical help. However I can find no evidence to suggest that having a child with Downs Syndrome is a tragedy or an intolerable burden. Instead it is shock because it is unexpected and families feel afraid but with good and positive information and support it can be as happy an event as the birth of a so-called "normal" child. One of the best resources of all is other parents, who are a gold mine of information as well being people who know, much better than the professional workers, exactly how the new parents feel.
For many people with disabilities, social attitudes are much more of a problem than the impairment itself. If children with Downs Syndrome have equal access to play, leisure and education alongside other children and adults have opportunities for leisure, education, employment and housing then they can prove that they are as valuable as anyone else. Those who have additional physical or communication disabilities will need personal assistance and additional health care. Resources for this should be diverted from research into screening and the cost of so-called therapeutic abortions.
The medical implications of screening are very complex. Prenatal genetic screening will never eliminate disability because only a small proportion of disability is genetic. 90% of infant disability is due to social causes such as poverty, disease or accidental and non-accidental injury. Screening is not all that efficient in its attempt to eliminate Downs Syndrome, although it is getting better at it. Ten years ago (1992) an article appeared in the British Medical Journal about the "Bart's" triple screening test. This was offered to women in four London Health Districts to 74% of pregnant women. In the 12,603 pregnancies 25 had Downs Syndrome. Only 12 were identified by the screening procedure. 4.1% had a false positive- that is, 514 mothers experienced the trauma of being advised that they were at risk and should have amniocentesis, but were not carrying a child with Downs Syndrome. Of the 12 babies discovered by amniocentesis, 9 were aborted. There were seven pregnancies with Downs Syndrome in the 26% of mothers who were not screened.

What Information?
There are no figures available about the number of miscarriages caused by amniocentesis, but with a risk of 1% this would suggest that at least 4 "normal" babies were miscarried as a result of the amniocentesis and possibly another four injured. Is this a price worth paying? Is it worth spending £456,000 to screen 20,000 pregnancies including the costs of amniocentesis and abortion but not including any expenditure on counselling and accurate information? What information was given to the 9 women who had abortions? In 1993 I visited a Health Services Roadshow, in Central Hall, Westminster. In one display about maternity services, I saw a leaflet given to expectant mothers about screening, amniocentesis and termination. The only description of Downs Syndrome was the adjective severely handicapped "with no mention of the fact that mostly people with Downs Syndrome walk, talk, feed themselves, read, write, swim... and do lots of things which the word "severe handicap "implied they cannot do. This may have a lot to do with the fact that many medical textbooks and even general; health publications base their descriptions on the observations of "patients" in long stay mental handicap hospitals.
Written and verbal information is very patchy. In another article in the BMJ (British Medical Journal) Theresa Marteau described research into 102 routine consultations between midwives, obstetricians and pregnant women. Their findings were that over all little information was provided about the test, the condition screened for and the meaning of either positive or negative results. Screening was presented in a way as to encourage them to undergo the test. The main information given was where and when the test would be, but patients were neither encouraged to make choices nor were the limitations of the test mentioned. If Downs Syndrome were detected, some doctors automatically offered appointments for amniocentesis with an abortion booked three weeks after the amniocentesis. Undirected counselling was rarely offered and families went through a process of distress, stress and pressure.

My Own Experience
My own experience was that the diagnosis that my second daughter had Downs Syndrome was totally unexpected, I was neither in the "at risk" age band nor was there any family history to suggest it. When I was expecting my third child the situation was quite different. I was over the hill, past 36 and I now had a family history of Down's Syndrome. I did not see a consultant at the antenatal check up until I was 12 weeks. He deplored the fact that I had only been seen by junior doctors and that I hadn't had the CVS (choroinic villus sampling), which I have since learned can cause deformities of the hands and feet. He tried to persuade me to have an amniocentesis but I felt the odds of miscarriage out weighed the 1 in 700 for risk of Downs Syndrome nor would I have contemplated a termination, whatever the results. On a further visit he suggested that because I already had a child with Downs Syndrome the odds were more like 500 or 400 to 1, and offered me the test again. When I refused he asked if I had discussed it with my husband! He was slightly taken aback when I said, yes we had, and that he was of the same mind as me. I was aware of the fact that bringing up two children with Downs Syndrome (with their sister who doesn't) would be difficult. However my experience of meeting many people with Downs Syndrome had led to a strong conviction that they had as much right to life as any other child, and nothing could justify destroying that life. However, I did feel that my judgment was being questioned (perhaps he thought my brain had been addled by hormones) and I do not know what my reaction would have been if I was not as knowledgeable as I am now about Downs Syndrome and this had been my first child.
Many people are rightly appalled by the present use of amniocentesis solely for gender so that girl babies can be aborted in societies where females have a low status. Many people who deplore this practice find it acceptable to abort handicapped babies because handicapped people have a low status in our society. It is the devaluation of disabled people which is behind much of this research into screening for termination. To some, disabled people are seen as unnecessary, undesirable and unworthy of resources. A more common attitude is that they are all dependent, immature passive recipients of care. These negative pictures of disability which are based on ignorance and prejudice assume that the characteristics associated with Downs Syndrome should take precedence over life, ignoring any positive qualities that they have, and denying their humanity.

No Sentimentality
I have no intention of sentimentalising about Downs Syndrome. There is an old cliche, that they are all docile, affectionate and fond of animals and music. Many people with Down's Syndrome do not fit this description. They can be hyperactive, obstinate, unkind and tone-deaf. They should not be put on a pedestal as heroes, yet their accomplishments achieved despite discrimination and obstacles need to be recognised. Sarah Duffen and others have passed their driving tests. Nigel Hunt was an author and Sally Johnson a very talented artist, there are actors like Keith Purdon, musicians like Suj, Judy Hebden and Fiona Ray have won the gold Duke of Edinburgh's award. Ronnie Broomhill is an outstanding sportsman and many others have succeeded in sport, the arts and in ordinary life. People with Downs Syndrome are as varied in personality as any other cross section of the population. Their looks have more to do with the family characteristics they have inherited rather than the features of Downs Syndrome as can be seen by the eight young people illustrating this article. No one can predict from a screening test what their abilities or disabilities will be and nothing can justify killing them before birth, on the assumption that they are not worthy to live.

Source: http://caslater.freeservers.com/praise.htm
Revised: November 9, 2002.