"Even as their faces and bodies show signs of maturity, their speech, gestures, and expressions of affection in family and social relationships remain those of a child. Like a child still dependent, protected, craving physical contact, the disabled adult—especially the mentally disabled—often displays in public demonstrations or gestures of affection that do not match his or her age."
We all remember certain people we have encountered by chance on the street, in shops, in public places: a young woman of uncertain age walking with her favorite toy tucked under her arm, a boy taller than a teenager crossing the street hand-in-hand with his mother. Sometimes we have wondered: "But how old is he or she really?"
It is true that their facial features often deceive us. People with Down syndrome, when they become adults, retain a round face, almost childlike, with few wrinkles. Their way of walking typically has a particular heaviness to it. Beyond these physical characteristics, we can observe that among disabled people, hairstyle and clothing often remain unchanged, following a style dictated first and foremost by convenience and adaptation to daily life. This style does not evolve with age.
And even as their faces and bodies show signs of maturity, their speech, gestures, and expressions of affection in family and social relationships remain those of a child. Like a child still dependent, protected, craving physical contact, the disabled adult—especially the mentally disabled—often displays in public intense demonstrations, even loud ones, with words or gestures of affection that do not match his or her age. A psychologist once illuminated this dynamic by describing an elderly mentally handicapped woman, calling her at once a "perfectionist little old lady" and a "playful little girl."
It seems, then, that time stands still for the young disabled person, at least in the gaze we so often fix upon them and in the relationship we maintain with them over years and decades. They often move directly from the state of "young disabled person" to that of "already elderly disabled person" when the physical signs of old age suddenly attach themselves to features that had been perceived as infantile for far too long. In our eyes, disabled people seem to precipitate into old age, and they are thus deprived, in a sense, of the full substance of adulthood. We unconsciously erase it.
Why do we hide their "duration," their authentic history? What we have said about physical features, clothing, and behavior is not enough to explain it.
Disability keeps a person in profound dependence and carries with it a kind of protective maternal concern that extends for a long time. What is more, we are accustomed to thinking that only a history tied to particular events and marked by clear and significant biological stages counts as real.
Yet the physiological and emotional stages of disabled people escape ordinary rules, and we are not aware of it. Their puberty, for instance, often seems an embarrassing fact, even pointless, and it does not represent that moment of initiation that moves us and transforms our gaze when we encounter a non-disabled adolescent.
Their sexual awakening is often all too evident, frequently accompanied by compulsive behaviors, and it becomes a problem to manage and control (sometimes to eliminate any risk of unwanted fertility) rather than the flowering of an adult personality. This is true both in family relationships and in institutional life. We forget, then, that they experience this awakening, this inner call, in the frustration of being denied or not recognized in their intimate transformation.
Undertaking vocational training or attending a workshop are "structuring passages" in their history.
Staying in the realm of affection and sexuality, it is interesting to note that our refusal remains identical when disabled people are elderly. When we see that among them, in advanced age, love stories can blossom or attempts at erotic gestures can occur, we are always greatly surprised, perhaps scandalized. Is it disproportionate, when one is old, to abandon the social role where one had stopped in order to "begin again" a love story? If we think of the words of Jacques Brel—"we have often seen fire spurt from a volcano we thought too old"—we never think that they might apply to the elderly disabled people we know!
Yet we must admit that disabled men and women truly have a personal history, their own form of maturation. Every disabled person, no matter how severely disabled, experiences stages in their intellectual awakening, in their psychomotor development, even if in relative measure. Various types of stimulation programs today confirm this. Learning to speak in a certain way, struggling to read even if stuttering, undertaking vocational training or attending a protected workshop—these are all "structuring passages" in their history. Every hurdle overcome in pursuit of greater autonomy marks a "before" and an "after."
The emotional life of young disabled people knows phases of attachment to a certain friend, a certain caregiver: these moments must not be minimized, because they are often lived intensely and contribute to building a true "history," intimate and deeply personal.
Every family event resonates profoundly with them: the aging of parents or the death of one of them causes them to lose their points of reference and forces them to adapt to a different environment, to grieve, and to "change." The marriage of siblings and the birth of nephews and nieces—considered the only true "historical events" of the family—represent for disabled people significant personal events around which they must find their place, events that make them suffer, rejoice, move, and live THEIR story.
Too often we observe that in a family, a young disabled person is kept in a fixed state that protects him or her but also paralyzes them. They are not seen as a bearer of history; the history tied to particular events (the chronicle) belongs only to the group of siblings.
If we believe in their evolution, can our love for them also be respect and hope?
They are not recognized as having an evolution that structures their personality, a maturity that forms slowly over time. But without those preceding stages, when aging appears one day, it will be "plastered on," as we have said, like a bewildering mask on a face that has been infantile for far too long.
Our behaviors often manifest an unpleasant immobility: they stiffen our relationship with the disabled person, enclosing them in expressions inadequate to their actual age. One example comes to mind that says much: a catechism coordinator for handicapped adults, writing in the parish newspaper to announce a liturgical celebration they had led, titled the article "a small celebration." That adjective unintentionally testified that her gaze fell on them as if they were children; because a liturgical celebration adapted to the psychological, intellectual, and motor potential of disabled adolescents and young adults has nothing to do with introducing faith to children aged three to eight!
Even in our life choices for them, in our "protective" solutions—which reassure us as we age and contemplate what will happen when we are gone—even here there is sometimes a trap of immobility for the disabled person. Whether it is a workshop "where they can remain forever," a group home "without age limits," these are solutions marked by the reassuring seal of permanence that risk having a perverse effect.
Time will stop for those we immobilize in this way. We want to protect them from harm, and despite our best intentions, we damage them, halting their history—that history we have not always known how to understand.
And if we do not believe that, despite everything, until the end of their lives, they will be bearers of a dynamism that will carry them toward ever greater evolution, can our love for them still be respect and hope?
- Mireille Couant, 1996
Disability keeps a person in profound dependence and carries with it a kind of protective maternal concern that extends for a long time.
Undertaking vocational training or attending a workshop are "structuring passages" in their history.
If we believe in their evolution, can our love for them also be respect and hope?
Marriage and couple consultant, from "Recherche" no. 85/86, journal of the Union of Associations "Conscience chrétienne et handicap"