· Handicaps and the cultural climate ·
In Italy a strong protest arose at the news that the Veneto Region had proposed excluding people with serious mental disabilities from access to organ transplants. The reaction, on the basis of the available information, was right, but the Region hastened to explain: no discrimination is made against anyone in Italy as regards access to health care, and especially not in the Veneto.
This is reassuring: anyone wanting to apply a selective criterion for access to the right to health care, based not on the benefit to the patient of such care but on which patient “deserves” it, would create an unacceptable discrimination.
This said, the reaction of amazement that this news met with provides food for thought, given that in the West genetic discrimination is unfortunately a daily event and is accepted in practice. Today, do we not live in a civilization that permits the prevention of the birth of conceived children because they have a handicap? And do we not live in a world that is at a loss to know what to do with the disabled children who have already been born?
In 1984 a Down syndrome baby in the United States – conventionally known as “Baby Doe” – was left to die of hunger because the parents refused to give permission for surgery to correct the operable abnormality of the oesophagus with which the child had been born. The Supreme Court has passed a law to prevent the repetition of such episodes; today, however, this law is once again being disputed, both in the political arena and in hospitals: a study has shown that for a vast number of resuscitators the burden that the disabled child will be for the family is an important factor when the decision is taken to treat the baby or to let him die. In the opinion of many of these doctors life with handicaps is not worth living ( Journal of the American Medical Association, November, 2000).
Similarly, in 2000 in France, a decree was passed enabling a child born with a disability to report the doctor who had made an erroneous prenatal diagnosis: it ruled in fact that it would have been in the child's interest to have been aborted. This decree was withdrawn after protests by the families of disabled children, who set up support groups against handiphobia to defend themselves from the stigmatizing consequences that the measure had produced in public opinion.
However, the French have certainly not set this issue aside and on 11 June this year the Constitutional Court will again pronounce on this Decree.
Who shows any indignation about these disturbing facts? Ours is a handiphobic society, in which people are at last rising up against expressions of racial discrimination, yet discrimination based on genetic disease is still accepted; the idea of “the perfect child” and of prenatal selection is considered normal in a society which spends billions on genetic prenatal diagnosis but leaves only the crumbs for research into rare diseases or for the treatment of Down's syndrome.
Moreover phobia about the disabled extends to adults too: “We believe that the real cause of the death of Mark and of people with mental disabilities like him”, said a report to the British Parliament by the important Mencap Society in 2008, “was indifference in the National Health System to mentally retarded people and their families”.
What are the causes of this phobia which, according to the journal The Lancet, has made mentally disabled people “almost invisible to the National Health System”? Of course, at its root one finds the lack of training for doctors in the specific problems of people with handicaps, but “there seem to be cases of shameless discrimination, when doctors seem to make arbitrary value judgements on people with mental retardation”.
Over and above the situation in Italy, it is impossible not to protest at the painful consequences that would ensue were the cultural climate described above to be accepted – and it is accepted all too often. It is a climate that “flirts with eugenics”, as Didier Sicard, Honorary President of the French National Consulting Committee on Ethics, put it.
If we are indignant, let our indignation be total, leading us to condemn forms of discrimination against the disabled expressed in such shameful behaviour as bullying and the cultural support of discrimination against the disabled, even when the person concerned is an unborn baby or a babe in arms.
It is an opportunity to build a world without barriers: with schools that teach how to make friends with a classmate who can't talk; with television programmes that show the success at sports of someone who does a slalom with only one leg or plays basket ball in a wheel-chair; with medical practices that do not make people routinely count chromosomes before deciding whether or not to love a child; with a culture that offers substantial financial and social support to the families of the disabled.
On these bases – without excluding any – not only is the Church open to dialogue but she has always offered the dedication of her associations and volunteers to all who want to try to build a more humane world.
St. Peter’s Square
April 26, 2019
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