Back To : Guardian letters letters@guardian.co.uk Polly Toynbee polly.toynbee@guardian.co.uk Date : 12 September 2000 00:03 Subject : RE: "Two into one - The Catholic view that the Siamese twins should not be separated is right, though for the wrong reasons". by Polly Toynbee, Friday September 8, 2000 MY VIEW - Human rights, denied for the wrong reasons : Mary and Jodie - LIVES MORE IMPORTANT THAN MOST. While disabled people are down here fighting for basic human rights, how tragic to find such an archaic article. It seems The Guardian does not support our national and world-wide struggle against medical abuse. The case of "Mary and Jodie" the conjoined twins has ominous legal significance for disabled people in the UK. It is not a matter of releigion against science: it is a matter or life and death of real people, a matter of a foriegn legal system against the rights children and their loving parents. As far as I am aware it is supposed to be illegal to kill children here in the UK, even if they are disabled. The court ruling to kill "Mary" (by whatever method) will change how the law views parental consent and "mercy killing" of disabled people forever, for the worse. Some discriminations already present for disabled people : babies are killed before they are born (up to full term!), almost routinely, after pre-natal genetic diagnosis of Downs Syndrome or Spina Bifida (which are not usually fatal). parents are offered choices to deny life-saving health treatment to infants, which would not be the case if the child were non-disabled. people who kill their disabled children are given relaxed punishments. competing for healthcare, having treatment withdrawn and denied, and medical abuse. people arrive in emergency rooms and have "Do Not Recussitate" notices put on their file, because of someone else's judgement of their quality of life. disabled people are forced, through no other independent choice, to be educated, live and die in segregated provisions like prisoners, whilst lining other people's pockets. I do not think we need to loosen the laws around the human rights of disabled people any more, I think we need to tighten them up! This all is apparrently "socailly acceptable", due our exclusion from ethical debates around these issues, compounded by those neagtive images of "useless eaters" reinforced constantly by the press the TV, etc. Whose lives are we tlaking about here - who should decide what is ethically right or wrong? Who would you let choose about the value of YOUR life? if you are lucky to live long enough it's almost guaranteed you will be disabled eventually and this may affect you. If it were me, I would not want it to be someone with only a "damaged speck" of first hand understanding of disability. It's not just our impairments which disabled us. IN fact it's mostly nothing to do with them and more to do with: ignorance, discrimination, prejudice, exclusion, segregation, misunderstanding, communication barriers, poverty, unfamiliar socialisation, inferior education, physical barriers, abuse, poor health & social support - underpinned for many of us by conditioned self-hate. Take our impairments away and most of it's still there. Smash these barriers down by starting to challenge and change that status quo, starting with our vaule as humans, and every life is worth living. Mary and Jodie's lives are already of more importance that those of most. Long may they live. clair lewis, Disabled activist & mother to disabled child. QUOTES from offending article : "Siamese twins are fascinatingly horrible freaks of nature" "as the parents strive to stop the doctors officiously keeping alive this monstrous abnormality that might or might not be two people. " "Far too much effort goes into officiously keeping alive damaged specks of humanity as ground-breaking paediatricians save ever-younger foetuses. Last month the British Medical Journal reported that nearly half of very premature babies grow up with some kind of neurological disability: a quarter of babies born at 22-25 weeks are severely disabled - blind and unable to walk." "For the courts to demand that parents must keep alive severely deformed children against their will is perverse and unkind." Other Links : DISABLED PEOPLE INTERNATIONAL Bioethics Declaration - "The Right To Live and Be Different" GLOBAL RIGHTS CAMPAIGN Disability Awareness in Action - DAA Michigan State University 4-Apr-98 Conjoined or "Siamese twins": To separate or not to separate?