Briefing Paper on the Right to Life

Transcription

1 Briefing Paper on the Right to Life Discrimination has gone so deep it threatens our right to life. INTRODUCTION Everyone has the right to life, liberty and security of person is the third article of the Universal Declaration of Human Rights and the first article that actually stipulates a right, rather than making an ethical statement. Increasingly, in this age of scientific advances in health care and genetics, ethical decisions are being made as to how these advances should be used and who should receive treatment. Almost daily medical practitioners are making cost-cutting decisions as to who should receive a life-saving treatment and who should not. The scientists and pharmaceutical companies advertise their advances in terms of therapy and the elimination of disease and suffering. Worldwide, the pursuit is on for physical and mental perfection and for individual happiness. However glorious it may sound this pursuit is a dangerous game. Anyone who does not conform to the idea of perfection or who is not straining for happiness becomes socially unacceptable. It becomes morally and ethically sound to eliminate these so-called imperfections from the human genome and to ensure that the public purse is not wasted on those imperfect lives that appear to have no quality. We are becoming aware in the UK of an ever-increasing number of disabled people who have been allowed to die through lack of treatment or resuscitation or have been deliberately killed through abortion or euthanasia. In many societies in the past, people from a different race were seen as unacceptable and were eliminated, either through war or deliberate genocide. Up until 1998, parents in China were encouraged to abort girl foetuses and still, in some countries, girl babies are left to starve. The world society decries this as barbaric, as eugenics, as totally unacceptable. Europe and the USA have recently taken up arms against what they considered was eugenic behaviour (or ethnic cleansing, as it is now called) in Serbia. Despite these fine responses to race and gender, disability and disabled people are not included. In abortion, embryology, genetics, health treatment,

2 resuscitation, and euthanasia, policies and practices all deny disabled people or disabled foetus the right to life. ABORTION In precisely the same law as China abolished abortion on the grounds of gender in 1998, it imposed mandatory abortion of disabled foetuses and sterilisation on disabled people. In the UK and many other developed countries, abortion on the grounds of gender or race has long been outlawed but nearly all countries have selective abortion times on the grounds of disability. In the UK it is possible to have an abortion at any time until full term, if there is a disability prognosis for the child. EMBRYOLOGY Many women are being able to give birth through the new techniques of embryo research. This is excellent. But when leading scientists use their techniques to ensure that only perfect babies are born, or babies designed by the expectant parents, then eugenics is being allowed to flourish. Designer babies are already being formed in the US under embryo techniques. As Dr. Edwards the co-founder of IVF in the UK said at an International Conference this summer, it would be immoral for parents involved in IVF to give birth to a disabled child. NB. There was outrage when Glen Hoddle suggested that disability was the reincarnation of sin nobody from Government said a thing about Dr. Edwards. GENETICS Whatever the scientists or pharmaceutical companies would like us to believe, genetic science is not advanced enough for designer people to be a reality. But the danger is that the possibility is being talked about. Society believes that it is being morally responsible to eliminate all signs of disabling conditions from the gene-line.

3 Of course this will not eliminate disabled people per se, people born with a disabling condition are very much in the minority in the disabled population. However this attitude is setting a precedent for other denials of the right to life for disabled people. It also feeds on the considerable fears that parents have at the thought of having a disabled child or that most people have of becoming a disabled person themselves. HEALTH-CARE This violation of disabled people s right to life is seen very clearly in many aspects of healthcare today. Much assessment on allocations of treatment and funding is based on Quality Adjusted Life Years or QALYS. These form a control system whereby health professionals can justify their funding decisions. As the stereotype of a disabled person is someone who is unable to function properly, is unemployable, unmarriageable etc. QALYS are going to militate significantly against any chances of life-supporting treatment. Recent research from the Downs Syndrome Association showed that 40% of people with Downs had been denied treatment because of their impairment. The medical profession have often said that certain treatments (such as heart transplants) would not be medically suitable but in the USA where this argument has been challenged through the Americans with Disabilities Act, it has been proved to be an excuse, not a truth. One hospital in this country has been subject to an inquiry because of an alleged denial of treatment regarding heart treatment. An internal inquiry, hardly surprisingly, did not find any grounds for the allegation. Research of use of the flu vaccine showed that 50,000 elderly patients with senile dementia and Alzheimer s disease in UK hospitals and nursing homes are routinely denied the vaccine. This policy appears to be pursued because medical staff believes that a bout of pneumonia, associated with flu, is a much more dignified way to die. 54 elderly and visually impaired residents of New Wycliffe Home in Leicester have been struck off GP lists because they take up too many resources.

4 Quality of Life is also used as an excuse to allow someone to die through the imposition of a Do Not Resuscitate Notice. Under present law these notices can only be given by a doctor in a hospital setting. Unfortunately they are being used in many other settings. As you can see from the attached cases, a school for physically disabled children wanted to be able to apply a DNR and a nurse at a Shaftesbury home delayed an attempt to resuscitate a young man of 26 with Spina Bifida, because of the nature of Stephen s physical disabilities A 40 year-old woman who is Chair of a Government advisory committee went into hospital with pneumonia last year and the doctor put a DNR notice on her files, without her permission. Luckily it was not needed. At least 50 elderly patients, hospitalised in the early 1990s with strokes, asthma and dementia, died after intravenous drips were removed whilst they were sedated. The drips were providing fluid and/or nourishment. LETHAL TREATMENT The case of David Glass is being taken by the police as a criminal case of manslaughter. What needs to be made clear is that diamorphine suppresses lung function. It is never given when the lungs are already in distress or mal-functioning for any reason. Under those circumstances it is lethal unless an anti-dote is administered. This is common medical knowledge. There is much more anecdotal evidence from disabled individuals that they have been given treatment that contra-indicated on their underlying condition because apparently doctors could not be bothered to give alternative treatments or felt that their lives were not worth saving any way. What we do not know, of course, is how many have actually died because of inappropriate treatment. As far as infants born with obvious extreme impairments are concerned many doctors will admit to ensuring that they do not survive. Dame Mary Warnock quite openly praised her doctor father-in-law who routinely left newly born babies to die.

5 THE WAY FORWARD We need to gather more evidence. DAA has set up a worldwide violations database that has already recorded a thousand cases in the UK, 10% of which affect the right to life. Other organisations too are carrying out much needed research. We need to raise awareness. The debate on genetics and other bio-ethical issues is intensifying. Disabled people must make a significant contribution to this debate in order that our difference and quality of life should not be used as a reason for our elimination whilst at the same time ensuring that beneficial treatments are available. The Human Rights Act and the Disability Discrimination Act should both be vehicles through which disabled individuals and their families could seek redress. The Right to Life should be a matter of priority for the Disability Rights Commission. CONCLUSION This violation of the right to life for disabled people is an extremely sensitive topic, for both disabled people and the rest of society. We wish to be seen as a humane society who cares for all its members. The institutionalisation of discrimination against disabled people is now acknowledged and as the years go by, disabilism will take its place alongside racism and sexism. However we need also to recognise that this discrimination has gone very deep and has threatened our right to life. If this becomes a point of debate and discussion then we will go some way to solving the problem. info@daa.org.uk