issue 233 - July 1992
Tyrannies of perfection
Genetic engineering aims to screen out disabilities in its quest for perfection.
Jenny Morris ponders just what kind of society it would create.
In 1990 a North American, Kenneth Bergstedt, petitioned the Las Vegas courts for permission to 'end his painful existence'. A newspaper report stated that Bergstedt 'was a 31-year old quadriplegic hooked to a respirator for more than 20 years' and for whom 'life was no longer worth living'. A psychiatrist told the court that 'the quality of life for this man is very poor, moderated only by a momentary distraction, but forever profaned by a future which offers no relief.'1
The judge ruled that Bergstedt had the right to be given a sedative and taken off his respirator. That he might be suffering from depression, mental illness or that there might be economic or other changeable factors making his life unbearable was not taken into account. In this, as in similar American cases, the basis of the judgement was that it is entirely rational for a person with a significant physical impairment to want to die.
In the same year British legislation on abortion was changed so that termination of pregnancy can now only be carried out up to 24 weeks gestation. Except, that is, where the mother's life is in danger or where the fetus has been diagnosed as being 'seriously handicapped'.
The new time limit was seen to be more appropriate than the previous one of 28 weeks as babies born at 24 weeks are now able to survive because of advances in medical and nursing care. However the exemption to the time limit means that if there is a diagnosis of 'physical or mental abnormalities' the pregnancy can be terminated right up until 40 weeks' gestation. An attempt to place a duty on doctors to preserve an aborted fetus' life if it is capable of surviving outside its mother's womb was defeated. As the Archbishop of York, who was not arguing from an anti-abortion position, stated during the debate in the House of Lords, the new legislation means that 'seriously handicapped people may be destroyed simply because they are seriously handicapped'.2
Half a century ago, in 1939, a decree was issued in Germany charging two doctors 'with the responsibility of enlarging the authority of certain physicians designated by name in such a manner that persons who, according to human judgement, are incurable can, upon a most careful diagnosis of their condition of sickness, be accorded a mercy death'.3
One of these doctors, Karl Brandt, defended himself at the Nuremberg War Crimes Tribunal held after the Second World War by arguing that euthanasia for physically and mentally impaired people was justified out of pity for the victim and out of a desire to free the family and loved ones from a lifetime of needless sacrifice'. The 'Euthanasia Programme' which Brandt ran killed around 200,000 adults and children designated as 'lives unworthy of life' between 1939 and 1941. Some of the children were starved to death, most of the adults were removed to special institutions where shower rooms were converted to gas chambers. In his defence at the Nuremberg Trials Brandt argued that he was merely putting into practice what the medical profession in other countries believed.
The explicit motivation for these three occurrences is the notion that physical and intellectual impairment inevitably means a life which is not worth living. The hidden motivation is actually that disabled people are not deemed productive and constitute a high economic cost.
Fear and belonging
Sometimes this motivation is not so hidden, as when supposed costs of spina bifida over a lifetime were used to support the case for the exemption to the time limit in British abortion legislation. The debate around the Nazi Euthanasia Programme was also couched in terms of 'useless eaters a term applied to people who were seen as making no contribution to society.
But there is another factor at play. Western culture places a particularly high value on physical ability, on youth, on what are perceived to be perfect bodies. Most people are scared of illness, scared of their bodies letting them down, scared of dependence on others. At the heart of all prejudice is an abhorrence of difference, a dissociation from experiences and appearances that do not fit in with what is considered to be right or normal, a separation of oneself from those who do not belong. People whose bodies look and behave differently do not 'belong' and our experiences are feared by non-disabled people who do not like to be reminded of the vulnerability of the human body.
The assumption that our lives are not worth living means that non-disabled people feel they have a right to look at our lives and say: 'Your experience of your body is so awful, the restrictions so inevitable and intolerable that you would be better off dead. And we are doing you a favour by condoning and assisting your suicide, killing you or allowing you to die'.
These are the attitudes which form the social context to the application of research on hereditary conditions. Developments in recent years have meant that genetic causes of conditions such as muscular dystrophy, cystic fibrosis, haemophilia, beta thalas-saemia and sickle cell anaemia have been detected and various methods - from screening carriers to abortion of fetuses found to be affected - are available to prevent children with such conditions being born. In addition the identification that a particular chromosome abnormality causes Downs Syndrome and the development of pre-natal screening for this chromosome have enabled the termination of pregnancies where a woman is found to be carrying such a child.
On the face of it the issue is simple. The first question a mother asks when her child is born is 'is it all right?' Most parents who discover they are carriers of a hereditary condition want to avoid giving birth to a child who may experience significant and sometimes painful physical difficulties. Most parents hope that their child will have a normal intellectual development. When a child is born with physical or intellectual impairments, it is almost always considered to be a tragedy for both the child and the family. But is this a tragedy? Are these difficulties solely a function of the hereditary condition? Many disabled people have argued that it is society which disables in the sense of being denied a reasonable quality of life. It is a society which institutionalizes us and excludes us from education and employment. It is society which denies us the type of personal assistance and health care which would empower us instead of diminishing us as people.
Most importantly it is a society that holds strong prejudices against disabled people and chooses to put enormous resources into the prevention of disability and very little into its treatment. Non-disabled experts are defining both the problem and the solution with little or no recognition of the prejudices which inform judgements about quality of life. The problem for them is our existence, and the cure is our elimination.
In America disability activists such as Mary Johnson have also questioned the notion that particular physical or intellectual characteristics mean a life not worth living. She argues that: 'a decision to abort based on the fact that the child is going to have specific individual characteristic, such as mental retardation or in the case of cystic fibrosis, a build up of mucus in the lungs, says that those characteristics take precedence over life itself. They are so overwhelmingly negative, that they overpower any positive qualities there might be in being alive'.
The disability movement internationally is confronting the difficult issues raised not only by abortion and euthanasia but also by genetic engineering. The three-billion-dollar Human Genome Initiative, for example, aims to map in detail the biochemical 'blueprint' of human kind and may ultimately be able to reveal and banish all medical 'frailties'. The social context in which such research is done encourages an unthinking acceptance that the elimination of certain types of people and experiences is straight-forwardly a good thing. At the moment disabled people are being excluded from this debate which is being carried on within the medical and scientific community.
Exclusion is indicative of our experience of an unequal power relationship: other people make decisions about our lives and in this case about our very right to exist. Such an exclusion must not persist for we have a right to be involved in the discussions and decision-making which so fundamentally affects our lives.
I have a friend who, faced with pressure by the medical profession to undergo screening to determine whether her fetus was normal' or not, resisted. She said that her child was very much a wanted child and that if it was born with, or acquired, particular physical or intellectual characteristics which meant that its needs were different from the norm, this would not detract from the value of its life for her - nor, she believes for the child itself. She hopes that the society in which she lives will eventually become tolerant and compassionate enough to divert sufficient resources to meet the needs which arise when our bodies are not perfect - whether this is through illness, old age, acquired or congenital disability.
Everybody, disabled and non-disabled, would benefit from such a society.
Jenny Morris wrote Able Lives (Women's Press, 1989) and Pride Against Prejudice (Women's Press, 1991).
1 Disability Rag, Sept/Oct 1990.
2 House of Lords Official report, 18 October 1990.
3 Hugh Gallagher, By Trust Betrayed, Patients Physicians and the Licence to Kill in the Third Reich, Henry Holt New York, 1990.