Rights of disabled unborn children

Like other parents of children with disabilities, I feel that my daughter is by no means a burden either on me or on society. Since my daughter - who is well cared for at Id-Dar tal-Providenza and at the Adult Training Centre Marsascala - is dear to me, it is with great regret that I am sensing pressures in this country threatening the right to life of unborn children thought to have a disability.

This was brought home to me during a lecture by Professor Alfred Cuschieri at a seminar organised by the Union of Professional Psychologists at Pope John Paul II Hall in Attard on December 3, 2004.

Professor Cuschieri, a consultant at St Luke's Hospital, displayed two slides showing two severely disabled newborn children. He said that images obtained by ultrasound and blood tests enable doctors to diagnose abnormality before birth. One hopes that out of respect for human dignity, justice and solidarity, intervention will only take place for therapeutic reasons and for the benefit of the embryo itself.

The Oviedo Convention for the protection of Human Rights and dignity of the human being deals with the application of biology and medicine: Convention on Human Rights and Biomedicine. Article 2, "Primacy of human being", states: "the interests and welfare of the human being shall prevail over the sole interests of society or science".

Writing in The Times on April 6, Manuel Mangani, a social worker, stated that a routine ultrasound scan had shown a six-cm mark on the baby's head. A foetal MRI test was inconclusive. The consultant obstetrician decided to refer the results to a renowned UK hospital for advice. All she got was a recommendation to "terminate the pregnancy" (the favourite euphemism for abortion). In the circumstances, she felt a further opinion was necessary and referred the results to the US, and the reply essentially confirmed the UK advice.

One can imagine the parents' shock. However, encouraged by their strong Christian faith and with the support of the Maltese consultant, they rejected the suggestion and carried on with the pregnancy, whatever lay in store. Further periodical tests carried out locally showed that the mark on the baby's head was diminishing. Still, all necessary precautions were taken.

At birth, the baby seemed to be perfectly normal. An MRI scan detected just a trace of the mark seen before. Further periodical scans confirmed the absence of any abnormality. Today the baby, at seven months, is the joy of the whole family. But she would have been welcome, even with a disability.

However, this case, together with many others we may not know of, is an eye-opener to a way of thinking that is developing and has taken strong root in Europe and beyond. A case in point was made public in the Daily Mail of May 31, 2004 wherein it was explicitly stated that abortion is carried out also after 24 weeks even where unborn children are found to have abnormality of feet, palate or cleft lip, all of which can be corrected.

Several statistics carried in the same issue of the Daily Mail showed that "there were more babies with Down's aborted than born with the condition in 2002, with 372 terminations compared with 329 births".

The Daily Mail further stated "the Charity LIFE of UK fears women may come under increased pressure if their unborn babies are judged to have special needs". Trustee Nula Scarisbrick said "this is straightforward eugenics. The message is being sent out to disabled people that they should not have been born. It is appalling and abhorrent."

Campaigner Patrick Cusworth said: 'Such statistics are an indictment of a society which places a conditional value upon its citizens based upon how "useful" they may prove to be in later life.

It is a violation of the right to life and a great injustice to children with disabilities and their families. Unfortunately, various consultants and specialists share responsibility for the the violation of the right to life of persons with a disability, even in Malta. As soon as they suspect a malformation in the unborn child, they pass the buck on to the parents without the latter having any professional counselling, support and guidance at the early stages of pregnancy. Such counselling and support would enable parents to take the right moral decision. As Bishop Cauchi pointed out: "He (i.e. the unborn child) is someone, not something. This is the ABC of sound anthropology". (The Times, March 25, 2004).

The Parliamentary Social Affairs Committee has taken the admirable step of carrying out consultations, and a full report is expected to be presented to Parliament and copied to all groups which took part. This is expected to be followed by further consultations, and a Bill will eventually be drawn up to be debated in Parliament.

In view of the latest scientific developments, it is hoped that a specific code of ethics will also be drawn up to ensure the respect due to all unborn children, including those considered to have a disability. I understand that a new law on bioethics which is to be approved by Parliament will ratify the Oviedo Convention. It is extremely important that such a law should define the human being as having its origin at the moment of conception.

In the course of a seminar held on May 6 at Ir-Razzett tal-Hbiberija, Magistrate Consuelo Scerri Herrera pointed out that Article 6 of the International Convention on Civil and Political Rights (1966) declares: "Every human being has the inherent right to life. This right shall be protected by law. No one shall be arbitrarily deprived of his life." She also quoted from the Declaration of the Rights of the Child, which states: "The child, by reason of his physical and mental immaturity needs special safeguards and care, including appropriate legal protection before, as well as after birth".

The National Commission for Persons with a Disability, in a press release issued on May 17 stated that the presence of a disability in the unborn child is sometimes given as a reason for abortion. There were cases abroad when abortion was carried out because the unborn child may have had a severe disability, whereas it resulted that there was no disability or that it was a minor one.

In Malta opposition to abortion seems to diminish substantially in the case of an unborn child thought to have a disability.

The statement goes on to state that decisions are taken on preconceptions and are often based on the erroneous conclusions that all persons with a disability have an inferior quality of life. And these decisions are often taken by professionals who have no direct experience of what life with a disability actually implies. On the other hand it is important that persons with disabilities should also have the required support in order to enjoy a quality of life not inferior to that of all other citizens.

The statement referred to above is in line with the law enacted on January 19, 2000, which specifies that there should be equal rights and opportunities for persons with disabilities. The whole purpose of the law falls apart if such "equal rights" are denied to the unborn. The universal right to life already referred to admits no exclusions.

It is really strange that there are people - including some from whom one would expect more maturity and responsibility - who are expressing misgivings or indifference at such a right being entrenched in our Constitution.

I trust that all MPs will stand up for their belief in the culture of life expressed so far and approve the national proposal for the benefit of all unborn children, including those with a disability and others thought to have a disability. One hopes that they will tackle this issue in the same way they have unanimously approved the EU Constitutional treaty.

Mr Axisa is president of Catholic Action's Social Assistance Secretariat