THE FAMILY AND INTEGRATION OF THE DISABLED
Conclusions of a Vatican Conference
On the initiative of the Pontifical Council for the Family, the Special Family Education Centre (CEFAES) and the Leopold Programme, various experts, doctors, psychologists, university teachers, professionals and directors and members of associations for the disabled with their families met in the Old Synod Hall at the Vatican from 2 to 4 December 1999, to examine the family's role in the integration of disabled children into society, with special attention given to mental handicaps (the complete addresses of the Congress will be published in the magazine Familia et Vita).
The Holy See's document, 4 March 1981, for the International Year of Disabled Persons, stated that all the loving acceptance and care which the family can give to the mentally handicapped child must aim at facilitating his future participation in the life of society. Eighteen years after this document, and considering the transformations and changes that have occurred in our society since that time, we can ask ourselves what we have achieved in this regard.
II. The situation of the disabled child in his family today
a) The dignity of the disabled child and its foundation
The first problem that the mentally handicapped child encounters today in society, as he seeks to be self-sufficient in relation to his family, is that this society many times is no longer favourably inclined to welcome him as a human person and the subject of inviolable rights. This handicapped person often finds difficulty in exercising his right to live in society,to share space, work and housing with those who do not have a mental handicap. A certain narrowness in our society's ability to accept the mentally handicapped seems to be connected In part with an unclear perception of the intrinsic dignity of the disabled human being.
The Holy See's 1981 document rightly affirmed as a basic principle the fact that the disabled person "is a fully human subject", endowed with "a unique dignity" as a human being. However, this notion of the eminent dignity of the human being stems from a precise anthropology: the biblical anthropology that of man "created in the image of God" (Gn 1:27), fallen into sin, but redeemed, saved by the Death and Resurrection of Jesus Christ, and henceforth called to journey to his communion with God in Jesus Christ, the perfect image of the Father. The key to man's dignity does not lie in his autonomy or in his reason, in his ability to decide for himself or in creating his own universe: it is found rather in his reality as a human person, the only earthly creature that God has wanted for its own sake,1 the man "formed" by God, into whose nostrils God breathed the "breath of life", according to the beautiful image of the Book of Genesis (Gn 2:7), of man, finally, "able to know and love his Creator".2
In the perspective of integral humanism, which faith is able to perceive in greater depth, it is impossible even to entertain the hypothesis that God might have been "mistaken" when he created disabled children. On the contrary, we must say that God loves them personally, and that these children, thus conformed to the suffering Christ, are the object of his special tenderness.
A disabled person's dignity, founded as it is on his nature as a human person desired by God, is neither diminished by the gravity of his handicap nor conditioned by his difficulty in communicating with others. This dignity cannot be rejected, nor can it be lost; no one's dignity can be taken away; it remains the same to the last moment of one's life. Man has a transcendent vocation that goes beyond history and time. For this reason, any attempt to eliminate the life of this "unproductive" being for financial reasons or out of sympathy for the family of the seriously disabled child is unacceptable.
Today, however, this vision is widely forgotten or rejected. We are in a sort of tower of Babel in which there is the greatest confusion about human nature and the truth about man. There is much talk about human rights, but at the same time the weakest are denied these rights. The "religion" of "consensus" has replaced biblical transcendence. Fortunately, with regard to the disabled child, there are also many families in which responsibility and the capacity for love increase.
b) New scientific achievements in the developmental possibilities of the mentally handicapped
If there are reasons for concern about our society's actual capacity to accept disabled persons, we also find reasons for hope and encouragement for positive action in recent developments of medical, neurological, pedagogical and educational knowledge about the handicapped person. The evidence of "cerebral plasticity", that is, the possibility of recovery and development despite a defect or lesion in the hemispheres of this brain promise great hope for the future of our disabled children. Neurological science has shown that in the early years of life the connections in the brain that will be responsible for various important functions, such as the emotions, memory and behaviour, continue to develop.
Different studies have thus shown that non-verbal communication between the adult responsible for the child's care (usually the mother, but this role can be taken by any adult who is close to him) and the child himself has an important impact on the development of these mental processes.
One point that deserves emphasis here is the importance, today widely recognized, of what can be acquired i.e., "culture"—in relation to the biological factor—i.e., "nature"—in the development of one's personality. What we have received as a predisposition at birth does not determine once and for all the formation of our personality or our conduct. The "propensities" that influence us do not prevent the development of virtues.
This message of behavioural science is clearly positive, since it concerns the. possibility of personal and moral development for the mentally handicapped.
c) Affectivity and sexuality of the mentally handicapped
Another positive point offered by the development of knowledge about the mentally handicapped concerns the possibility for them to develop a true emotions and sexual life corresponding to their relational capacity. Today's mentality has changed in this regard. It is recognized that the disabled child has a predisposition for relational life, a predisposition which should be encouraged to the extent permitted by the seriousness of his handicap, by the extent of development of his personality and by the limits of his freedom.
Affective and sexual education must begin very early in the mentally handicapped, because it comes through knowledge of his own body. The sexual education of disabled children starts with an education in their relational life with others, with respect for other people, their intimacy and their bodies.
Later, the answers to their specific questions for information, must then be pedagogically adapted to the individual's intellectual ability to integrate this information.
It is important to teach these children to discipline their behaviour and to make responsible decisions. It is also important for parents to listen to their disabled child, in order to give him an opportunity to express himself about his desire for a relationship of friendship or love. But it is also clear that he must be told of the real limits that his more or less serious handicap places on the possibility of marriage.
To subject such persons—who are often unable to give truly informed consent—to contraception, sterilization or, worse, abortion as a matter of official policy is a practice that is not only unethical, but can also jeopardize their psychological development.
d) Educating the mentally handicapped
However, there is always a possibility and thus a need to educate mentally handicapped children. Even in serious cases, thanks to the encouragement given by the parents' affectionand the stimulus that comes from a family that is attentive to the child, he can develop on the psychomotor level and acquire a degree of autonomy. We must stress, in this regard, the importance of the nonverbal communication which a mother, continually present in the home, can establish with her disabled child. Through the exchange of looks, tender care of the child and affectionate caresses in his first months, the child's future integration into society begins.
The communications media can influence the development of the disabled child in a clearly positive way by facilitating his growth and integration into family life and hence into society. But the quality of this influence largely depends on the use that the family makes of the media. If the family does not have the habit of selecting programmes, the latter can have negative effects on all family members, especially on the disabled child.
III. The role of the family
"The family", as the Holy Father John Paul II underlined in his Message which was so enriching to our congress, "is the place par excellence where the gift of life is received as such, and the dignity of the child is acknowledged with special expressions of care and tenderness".3
a) The family as a source of love and solidarity
Because of the stable and faithful union of husband and wife, their reciprocal, total and irreversible gift of self, the family is the best environment for the child's personal development, especially when he is weaker, more limited in his abilities and therefore more in need of care, attention, affection and communication (not only verbal) with his immediate surroundings.
It is important to stress that the disabled child must never be regarded a "burden" to his parents, or his brothers and sisters. When this child is accepted as a son or daughter or brother or sister within the family, love itself enables difficulties to be lessened, to become tolerable and even to be a source of hope and spiritual joy.
b) The family as a teacher of the disabled
The responsibility for the education of all children, including those who are disabled, belongs to the family.
The constitution of the family is not merely a biological or sociological fact. Revelation shows us how the genealogy of the person as an Image and reflection of God is inscribed in the family. Therefore, if the family is born of God's love, it must also abide in this love; this is its basic characteristic, the foundation which supports the entire functioning of the family.
For this reason, one can say that the fundamental task of husband and wife in educating the disabled child is to keep love alive in their conjugal life and to inculcate it in all the children. In his family the child must feel loved, wanted and valued for himself in his uniqueness.
It is therefore necessary to mobilize all the vast "human capital" of the family, to which society must contribute.
The parents must ensure that family life is satisfying for all its members by their example, their joy, their kindness. Their conduct in the family must be such that the qualities and faults of each family member are known and accepted by all the members that make up the home.
Communication between spouses is essential for the children. The latter learn and live in their own personal dimension by sharing in the communication between their parents and by communicating with one another with a naturalness that stems from the very naturalness of the filial relationship.
It is the family which gives a sense of security to the child, which teaches him the concept of good and evil, shows him the value of his life in the world, communicates to him the joy that flows from love given and received. It is also the family's task to teach the child the meaning of pain, suffering, physical limitations and poverty. This is the anthropological "code" of the family. Families therefore cannot renounce this responsibility and must not allow other institutions—educators, administrators, health or social workers—to replace it in the education of the disabled child.
c) Negative and positive attitudes
"It is therefore the task of the family, having overcome the initial shock [of the arrival of a disabled child], to understand first of all that the value of life transcends that of efficiency".4Thus the family must not fall into the trap of seeking extraordinary treatment or care at all costs, at the risk of being disappointed, disheartened or closed in on itself when the desired results for a cure or recovery are not obtained.
There are different attitudes which the parents should avoid for the better development of their handicapped child. We have discussed some of them:
—the first negative attitude is that of rejection, of the denial of reality. This rejection Is never direct, but is perceptible in the explanation that parents give for their misfortune. In fact, unconsciously they feel guilty about what has happened and try to blame others.
—Another negative type of behaviour is that of fear:it is the response to an imaginary danger and indicates the subject's inability to adapt to reality. This fear is accompanied by an inability to make decisions, to adapt to the new situation, to seek the necessary means to resolve the difficulties.
—Less known, but equally negative is the attitude of super-protection towards the disabled child. At first, this attitude seems to display praiseworthy concern for and dedication to the child. However, the fact that the parents do everything in the place of the child does not facilitate the development of some degree of autonomy.
—Lastly, the attitude of resignation is also negative because it prevents the parents from adopting a positive and active attitude towards the disabled child, and so does not lead to the development of, his autonomy.
It is when the parents accept the reality of their child's disability that they can begin to be happy in their trial. It is when parents are happy despite the difficulties of their situation that they can make their child happy, whatever his disability may be.
d) The help that parents should receive from professionals
In order to fulfil the mission of educating children, the family needs to receive from professionals involved with disabled children the information and help required by their condition. Professionals can and must help parents to overcome emotional blocks, in order to face their situation realistically.
Scientists, doctors and researchers must be particularly sensitive to the hardship situations in which the families of disabled children live. In the first place, these families should be reminded that science has its limits and that physical health is not a right but a gift.
The role of doctors is to help these families find the proper attitude towards their handicapped child. This is why doctors and specialists are duty-bound to communicate to parents any knowledge and advances that concern their children's disability. They should do so in a spirit of service and solidarity, in a compassionate way, using an accessible and comprehensible language, with patience and understanding and with total professional honesty.
This ongoing communication of scientific knowledge is essential if parents are to face the reality of their disabled child's situation. Once they have been informed, they can give their child the appropriate education and treatment for his condition.
Families require adequate support from the community. If families are indispensable in accepting disabled children and raising them, they cannot succeed in achieving fully satisfying results by their own efforts alone. Here is the place for the intervention of specialized associations and other forms of extra family help; this ensures the presence of persons with whom the child can establish an educational relationship.
These types of assistance are even more necessary at critical moments of family life, when living together in the family becomes difficult if not impossible. The development of small community structures which can accommodate the disabled child for a time or give him a permanent home after the death of one or both parents is therefore important.
IV. Final recommendations
Great progress has been made in the integration of the mentally handicapped into the social fabric. However, the ever increasing number of disabled adults in society have inundated care facilities for the handicapped, with little possibility for them to be able to live the end of their life in dignified conditions. At the same time, thanks to the establishment of associations serving the disabled and their families, the condition of the disabled person who lives with his family has tended in some way to improve. Lastly, the possibility of achieving a considerable degree of psychomotor and intellectual development, by stimulating the disabled child's subjectivity in a cheerful and joyful atmosphere where he feels loved and cared for, has extended his life expectancy.
For all these reasons, today more than in the past, it is important to develop the existing networks of information and assistance for parents of the disabled, and also to set up new networks so that parents can face the truth as quickly as possible and offer their children the best conditions for development. At the same time, it seems necessary to act on public opinion through the communications media, to facilitate the integration into society of persons who are mentally handicapped, in a way compatible with a life of relationships with others.
The creation of specialized workplaces or institutions for the disabled, as well as more effective help from social workers, should facilitate the integration so strongly desired by the Holy See's 1981 document. "The quality of a society and a civilization is measured by the respect shown to the weakest of its members".5
The degree of enthusiasm in the social and active integration of society's less fortunate and needier members is the "thermometre" for measuring the degree of wisdom achieved by humanity on the threshold of the third millennium. These are some reflections we would like to share with the many families of the world and with the various movements and institutions involved in this crucial field.
1. Gaudium et spes, n. 24, 3.
2. Pastoral Constitution on the Church in the Modern World Gaudium et spes, n. 12.
3. Address of John Paul II to the participants in the Congress, n. 2.
4. Address of John Paul II to the participants in the Congress, n. 4.
5. Document of the Holy See for the International Year of Disabled Persons, n. 3; L'Osservatore Romano English edition, 23 March 1981, p. 6.
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12 April 2000, page 9
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