Handicaps and the cultural
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
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,
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decree was withdrawn after protests by the families of disabled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
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.