Disability: the value of life

“Our journey in life has shaped us and led us to love everyone, especially those considered the least in society. Who would be viewed less fortunate than a severely brain-damaged child?” These are the words of Mark and his wife, Ada, in sharing their personal experience which led to a social and political commitment following the birth of their daughter Chiara.

Marco is an official at the Finance Department; his duties and competence include financing plans aimed at establishing new cooperatives and enterprises as well as over-viewing the management of activities within the Public Service. Presently, he is local Counselor for the Region of Sardinia.

“Ada and I come from an experience of being committed as young people in the Focolare Movement, living a life marked by the values of fraternity, mutual love and unity. Together we made the choice of living the Gospel every day. We decided to form a family that is open to others, making ourselves available to those in need and choosing the path of mutual love.”

In 1987, two years into our marriage, Chiara was born. We really wanted this child and considered her as a new and important step in our married life. Shortly after her birth, the first symptoms of a neurological disorder manifested themselves. Since then Ada and Marco had to make and enact important and decisive choices: “One doctor suggested that we place her in a specialised institution so as to allow us to lead a normal life. But even though we were aware of the difficulties we would have to face, we decided to adapt to her way of life and not the other way around.”

“Thanks to our daughter.” Marco says, “We got into action by creating a network among many families who lived in similar situations, up to the point of putting together an organization which is now widespread in many Italian regions. It’s called ABC: Association for Brain-Injured Children which enables thousands of struggling families to have their rights recognized. We are thus able to exert an influence towards the creation of new structures and the promotion of laws that are appropriate and innovative in terms of dealing with disability.” One example we can give is with regards to a health care legislation dating back from 1998 which supports people dealing with severe disabilities who are facing critical situations, together with their families. Marco has promoted this law and has been one of the protagonists in the struggle for its implementation. Up to now, there are almost 20,000 funded projects. Sardinia has become the first region in Italy for which such resources to be allocated. It is a model for the other Italian regions, and even abroad.

“Together with other families and groups,” continues Marco, “we have become active participants in a social action promoting the implementation of human rights. We have taken upon ourselves the responsibility of people who are in critical situations, while going beyond the pietistic model and welfare approach which typically create social segregation. We are experiencing that by improving the quality of life of the so-called weaker persons, we are bringing about an improvement of society.”

Ada comments: “The 26 years of Chiara’s life have given me a profound sense of the dignity of human life, because even though she cannot speak and does not have the ability to move, she continuously gives me a message of vitality. I have learned to understand her body, hands and face language. My daughter makes me understand every day the immense value of her life and physical being. In my life, there is, of course, no shortage of pain and difficulties. But as I understand its profound significance, the outcome in an experience of light, of great fullness and, why not, of satisfaction and gratification, when I think of all that came out of it.”