Hope for these children, hope for their
families
From June 12 to 14 1997, the Pontifical Council for the
Family, the Pontifical Council for the Pastoral Care of Health Workers and the
"Centro Educacion Familiar Especial" (CEFAES, Spain) convened an international
Meeting in the Vatican of seventy-five experts on the theme: "Families of Children
with Cerebral Impairments".
The Meeting was supported by the Programa Leopoldo
(Venezuela). The participants exchanged a wide range of scientific, therapeutical,
ethical, spiritual and pastoral insights concerning the care and cure of children with
cerebral impairments. At the conclusion of the Meeting, they expressed their hopes and
concerns in the following Recommendations.
Vulnerable Persons to Value and Love
A person's body is always a human body, with a personal
character. No matter how great the cerebral impairment may be, these persons do not lose
anything of the absolute value conferred on them by the creative act of God's love.
Therefore, we hold that it is of the greatest importance
to keep in mind at all times the dignity of persons with cerebral impairments, no matter
how grave their affliction seems. People in fact lose sight of their dignity when the
prevailing hedonist and utilitarian mentality suppresses them through eugenic abortion,
infanticide and euthanasia.
We proclaim the absolute and inviolable dignity of
persons with cerebral impairments. Their hope for rehabilitation is founded on this truth.
Our first task then is to spread this vision of the person, that recognizes the greatness
of being a child of God. Pope John Paul II's description of these persons as
"cherished children of God" should guide all anthropological reflection on their
rights, care and treatment. Moreover, because every person develops through personal
encounter, the family as the basic social structure must be included in this reflection.
The Family Does it Better
We reaffirm that parents are the first and natural
teachers of their children, and that this applies also to the families of persons with
cerebral impairments. Recent advances in technology have revealed that neurological
development is a dynamic and constantly changing process, and that neurological functions
which are absent can often be restored. Home programmes, in which families are the
principal teachers and therapists, should be encouraged. Such programmes have significant
therapeutic and economic advantages over state-supported programmes.
We recommend that pastors be aware that behavioral
disorders are frequently caused by biochemical imbalance, nutritional deficiency, and/or
immunological reactions to foods or the environment, and that correction of these
disorders is possible.
We recommend that the diocese and parish should guide
families to these modern therapies, which offer new hope, and also that the parishes make
persons with cerebral impairments feel loved and welcomed in the liturgy, catechesis, and
all aspects of parish life.
Resources of Love and Life
We affirm that the family can face the most difficult
situations, by transforming suffering into love. Cerebral impairments should not be simply
described as a "family crisis" or a "burden to bear". To care for
these members of the family is truly a vocation of self-giving love. We recommend that
full social support should be given to those who have this responsibility. We hope that
one day a person with severe cerebral impairment might be proclaimed a saint of the
Church. Certainly many families can testify to the miracles of grace and reconciliation
that these special people bring to the home.
Single-Parent Families
Because of the alarming rise in the rates of illegitimacy
and of abandonment by one of the spouses, we recommend that special attention be given to
children born with cerebral impairments in these situations. The Church and community
should do everything possible to assist single parents with these children and also foster
marital responsibility.
Let Them Live!
While we welcome pre-natal diagnosis which is licit,
safe, and carried out in view of appropriate interventions to help the pre-born child, we
must speak out when such technology is used to seek out and eliminate those with various
impairments.
We reaffirm the fundamental right to life of every human
person. From the time of fertilization, the human embryo and foetus are to be treated as a
person. The human person may never be directly and deliberately destroyed.
Abortion, infanticide, and euthanasia do not eliminate
defects, but rather eliminate the person who has the defects. These practices strike at
the very heart of compassion, and undermine the motivation to seek new and effective ways
of enhancing the treatment, cure, and care of the preborn and newborn.
We recommend support for the growing number of
associations of disabled people who are fighting for the right to live before and after
birth.
We likewise reject the sterilization of persons with
cerebral impairments (cf. Catechism of the Catholic Church, n. 2297). Rather than
protecting these men and women, who should be given suitable supervision and education,
sterilization shirks responsibilities and degrades these persons and exposes them to great
harm.
Social Solidarity and Subsidiarity
Rather than impeding human solidarity, the presence of
persons with cerebral impairments may be God's way of calling us to deeper solidarity in
society, especially in the light of the corresponding principle of subsidiarity.
We recommend that family members, extended families,
parishes, and other mediating groups be favoured above other larger forms of social
organization, such as the State, which often intervene and prevent those most concerned
wth the well-being of the disabled "from acting as neighbors to those in need"
(cf. Pope John Paul II, Centesimus Annus, 48). This is why solidarity with persons who are
mentally impaired takes the form of subsidiarity that favours the family.
We recommend that public health-care systems and
appropriate legislation should always favour the innate value of each person and the
rights and responsibilities of the family, allowing freedom for the family to select
health-care options and providing appropriate family tax advantages. Human rights are not
defined by productivity or "usefulness".
The free economy must be seen in a broader context, which
places advances at the service of life (cf. Centesimus Annus, 42). Such advances are not
made by the State, but by creative individuals employing their initiative in economic
freedom.
The Spiritual Life of Persons with
Cerebral Impairments
A damaged brain is not an impediment to loving God or
others, for this love goes beyond physical and intellectual abilities. People with
physical limitations do not necessarily have spiritual limitations, even if they are not
always capable of expressing themselves.
People with these difficulties possess a mystery, a
"special secret". In interiority and prayer, they meet God and so come to love
Him and others. They may reveal these "secrets" in whispers to friends who know
how to be silent in order to listen.
We recommend that catechesis for children with cerebral
impairments, both in the family and the parish, should cultivate a sense of God,
especially through prayer and reception of the Sacraments. However, let us not imagine
that we are the ones who give spiritual life to these children, because it is they who can
give us the most wonderful spiritual gifts.
Priorities for Action
We conclude our reflections and recommendations by
underlining the most urgent priorities for action in favour of persons with cerebral
impairments and their families.
The misuse of prenatal diagnosis should be opposed
wherever it emerges, in view of the rights of all pre-born children and of the rapidly
developing forms of pre-natal and post-natal therapy available to children with cerebral
impairments.
A distinction must be made between love given by parents
and love given by professionals. Although both are important, priority should be given to
parental love.
Families need to be accompanied, not only at the time of
the birth of the child or during therapy, but as long as this person lives. Parish support
groups are essential in this work.
Guidance centres should be set up for families who have
members with cerebral impairments to help them follow methods of treatment and
rehabilitation.
Better formation should be provided for clergy,
religious, catechists, health and social workers, etc. so that they may assist families in
the care and cure of their children, with special attention to the spiritual dimension of
their lives.
New centres of common life should be established to bring
those with cerebral impairment and other disabilities into active and continuous contact
with the wider community.
A truly human "culture of the disabled" should
be promoted in schools and through the mass media, so that children may learn to value the
gifts offered to us by those who are "different".
Better communication must be developed between the many
support groups and therapy programmes around the world, especially by use of the Internet.
New and successful forms of therapy need to be made available to all families in all
nations.
On our part, in the light of this international Meeting
in Rome, we commit ourselves to continue to work together in the future. In the name of
the Lord of Life and drawing on the love and energies of the family He has created, we are
confident that we can offer hope for these children and hope for their families.
