That is the title of Enrico Montobbio's book, recently published by Edizioni Del Cerro. The subtitle tells us what it is really about: the adult life of the person with intellectual disability.
Montobbio imagines the passage into adulthood for young people with Down syndrome and intellectual disability as an imperfect journey—one blocked by real shortcomings, social barriers, and inherent limits. Yet, the author argues, if this journey "follows a path grounded in reality, seeking acceptable spaces for living and a fair balance between abilities and limitations," it can lead to genuine adulthood. Not the adulthood of an ordinary man, perhaps, but an authentic one—a simple man, sometimes very simple, no longer a child. A man with real status: a defined role in the working world, with recognized rights and duties, genuinely connected to society's mechanisms. The destination is not easily reached. And Montobbio urges parents, educators, and society itself to look at the disabled young person with fresh eyes and an open mind—to avoid the attitudes and initiatives that, instead of helping him on this uphill climb, trap him in childish or false ways of living.
Two entire chapters of the book are devoted to the problem of adolescence.
For Montobbio, the inability to live a real adolescence makes growing up extraordinarily difficult for the young person with intellectual disability. Adolescence is the time when we shed childhood patterns and habits, when we build a new identity. It is hard for anyone. But for him, it is forbidden.
Let us understand why.
The author identifies four communities—four external worlds—that become four "mental states" through which the adolescent constantly moves:
- the family world, where he is still cared for and protected
- the world of adults, which he enters in search of new conquests
- the inner world of thoughts and emotions, where he can take refuge
- the world of his peers, new support in facing new challenges.
It is easy to see how the disabled young person has limited and incomplete experiences in at least three of these worlds. Generally, he continues to live primarily within the family—or in the day center that replaces it—where he risks being treated by parents or staff as a child needing lifelong rehabilitation and care. But he cannot take the necessary steps toward adulthood if the people around him do not agree to relate to him as the young man he is becoming, rather than the child he was.
Moreover: adolescence is notoriously a time of crisis and distress for everyone, accompanying the physical and psychological changes of growing up. It is the age when parents and children prepare for separation—a separation both longed for and feared, both wanted and suffered.
For the young person with Down syndrome and his parents, all of this is far more confused and painful. Parents, naturally overprotective and fearful for their son, worry that loosening their grip will harm him. Moreover, Montobbio argues, the partial withdrawal needed to encourage his independence could revive—or shadow—that natural, instinctive rejection that parents feel at the birth of a child who is different.
But to recognize his new rights as a growing person, to accept that he will have experiences with others, that he will "learn to fend for himself," to acknowledge that his childhood has ended—this can be an important test. It is a beginning of preparation for the time when, in all likelihood, his adult son will move into the group home meant to receive him in the years ahead. If that transition is to happen with the greatest peace possible, it needs to be prepared gradually, one small step at a time.
Another difficult aspect of this moment is "Meeting the limit". As he leaves adolescence, every young person comes to recognize his parents' limits and accepts them. He recognizes and accepts his own. His life project is no longer a dream measured against reality—"not without courage and risk, but also with resignation and letting go".
it is necessary to be convinced that every human being, whoever he is, has the right to be as he is
For the young person with intellectual disability, for his parents, for the professionals around him, it is of course hard to accept this encounter with limits—both personal and real. The intellectual deficit imposes severe constraints. A realistic life project can be difficult to embrace because it seems too modest, not gratifying enough. A hard moment, certainly. But the journey toward adulthood must not stop on a dead-end track. We cannot treat the son as an eternal child free from the obligation to grow, nor can we plan an unrealistic future for him by giving him a false image of himself. In this delicate moment, a concrete and credible project, already sketched in the past and cultivated over the years, can be of great help. It requires watching his preferences and developing his abilities.
The author's final thoughts return to his opening premise: to adopt the right mental attitude, it is necessary to be convinced that every human being, whoever he is, has the right to be as he is—that people with intellectual disabilities are not to be transformed, hidden, infantilized, idealized, coddled, pitied, or treated as patients for life. They ask us only for the freedom to be who they are, with recognized social status, in a role that matches their abilities.
The author's thesis, his reflections, and the criticisms that illustrate it are compelling and largely compelling, a vital springboard for new insights. They grow from long experience in the field of job placement for people with intellectual disabilities. Yet Montobbio emphasizes that much still needs to be clarified and rethought in this area.
As I read the final pages—especially the invitation to adopt a juster mental attitude—I found myself returning to J. Vanier's recent writing on the maturity of adult life. "Self-knowledge and recognition of one's limits, acceptance of oneself, welcome of the other and his differences..." These seem to be aspects of an adult personality that alone do not constitute a "status" in society and do not replace the dignity that comes from recognized work. But perhaps they complete it, and they help us navigate the difficult moments and situations that come to everyone at every stage of life.
One last observation, to conclude. When the author asks us to see these young people not merely as individuals to study and help, but as people who feel and act and enter into relationship with others—and when he reminds us that how we look at them, what we think of them, and how we relate to them shapes who they become—we all recognize ourselves as a bit culpable, or at least distracted and superficial.
— Maria Teresa Mazzarotto, 2002