How does a father react to the birth of a disabled child?
A father's response differs profoundly from a mother's. She carried the child in her body and wove a physical and psychological bond from conception onward.
A father does not simply become the father of a disabled child. He is shaken to his core, in his deepest sense of self. The hopes he harbored for his son were boundless—until the discovery of disability, whether sudden or gradual, shatters them entirely. The longed-for child disappoints every expectation. His inner world and self-image collapse along with every anchor he had as husband and father.
A vertiginous distance opens between him and his wife. Their ways of feeling are so different that communication itself becomes nearly impossible, precisely when it is most essential. Temptation assaults the father from all sides: the temptation to reject this child so unlike the one he imagined; the temptation to omnipotence, to "normalize" the child at any cost; the temptation to flee an unbearable situation he never chose. He lives these temptations as torment, crushed by shame and guilt. He must find a way to integrate his son into his own life story, to secure acceptance from his extended family. He faces frustration at not transmitting his name, his family legacy, sometimes even his professional standing. His child's very existence introduces a powerful sense of death—death of the son whose disability is a harbinger, death of the parent himself, called into question by this child and his future. "What will become of him when I am gone?" Disability seems to forbid parents their own death. The father finds himself invaded by responsibilities that exceed his strength and test his courage to its limits.
How can a father move past these feelings?
The presence of disability is felt as a profound injustice and breeds guilt. When we suffer harm whose cause we do not understand, we tend to blame ourselves. People may offer scientific arguments to convince us that no one is at fault. But knowing the child carries a faulty gene does nothing to dispel the guilty feeling—though understanding the cause matters for knowing what can be done. What really counts for a parent is "the cause of the cause": why did this happen to me? The father's first liberation comes through expressing his anger, through being truly heard in the depth of his suffering without judgment. All these feelings—the desire to escape included—are legitimate. The second step is accepting reality. First comes mourning the imagined child—every father must do this—then mourning the child without disability. It is hard to admit that certain things every child learns, his will not learn, or not fully, or not on schedule. The goal of making the child normal, a devastatingly false hope, gives way to realistic goals: precise steps of progress to achieve. The parents' gaze shifts from the negative—all the things the child cannot do—to the positive: the progress made, the milestones reached, the joy they bring.
What is the father's particular role and responsibility in the family?
I see four paternal functions:
- Nurture physical life and affirm the child's sexual identity. The father has a more detached view of his child's body than the mother does, and can discern hidden symptoms or potential.
- Initiate and develop intellectual life. This happens through language and basic learning, adapted to the child's capacity. The goal is to cultivate the joy of learning, suited to the child.
- Introduce relational life. The father enters into relationship with the child first, to gradually separate him from his mother. The father establishes the rules of relational life: he names the prohibitions, the boundaries of freedom that respect others' freedom, the importance of forgiveness.
- Finally, initiate and nurture spiritual life. A disabled child may have direct and simple access to God that teaches us much. We must help him understand that God loves him as he is, perhaps even more, and that God dwells in him.
Those are ambitious goals…
Yes. But listen: no father can give his child bodily beauty and wholeness, the intellectual capacity he hoped for, success in emotional life. He can only help a unique person emerge—fragilities and all. The finest gift a father can offer is to stand in wonder before his son's gift, whatever that gift may be: artistic talent, the art of relationship, the capacity for joy, a gift for forgiveness. Moving from your own desires for the child to discovering his hidden gifts means doing work on yourself. Autonomy is one of four educational aims, alongside freedom, communication, and self-trust. But autonomy is often confused with independence—doing things alone. Real autonomy is the art of knowing when and how to ask for help in order to pursue and realize your own projects. To educate for autonomy is to help a person discern what he can do alone and what requires others. Parents face great temptations: to overprotect, to discourage ambitious dreams. The father is the one who draws out his son's desires and helps him build a life project. Finally, a hard step for every father: knowing when to step back, after accompanying his child, to let him live his own life.
It sounds as though a father of a disabled child must be perfect…
Perhaps the first task of a father is simply to love his child, to help him, to care about his future—especially since disability demands an abundance of love and attention. The hardest part may be that the child will reveal to the father his own unknown limits. Disability becomes a mirror of our deepest humanity, a path of truth. If the father can humbly admit to his child that he has not always measured up, he gives an essential gift. Then the child has the chance to forgive the father for the moments he caused him pain—this is love's deepest expression. And the father can say in return: "My son, my daughter, you have drawn from my heart more love than I believed I held. You are my beloved child"?
by Gilles Le Cardinal, Ombre e Luci no. 92, 2005
Gilles Le Cardinal is professor of communication at the University of Compiègne, member of L'Arche, father of three children, and author of "Living Fatherhood," published by Desclée de Brouwer, with a preface by Jean Vanier.
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