Notes by Anna Cece from a conference by Prof. G. Moretti, presented at the symposium "No Longer Sixteen," organized by the association La Nostra Famiglia, held June 14–15, 1986 in Molveno, and published in Notiziario Informazione Amici Don Luigi Monza, n. 3/86.
In recent years, we have spoken much about disability and taken some action—in prevention, early diagnosis (even prenatal), rehabilitation, school inclusion. The focus, in short, has been on the child.
But what happens when that child is no longer sixteen? Our attention and our knowledge seem to stop at the threshold of young adulthood, as if our intervention during childhood could sustain someone for life.
Those with direct experience know otherwise. A disability is not a stable, fixed condition that only improves with proper care from the start. It changes with age. Understanding those changes matters—it helps us grasp the new struggles of disabled adults and, when possible, prevent them.
Like everyone, an adult with a disability undergoes change at many levels.
Biological Changes
First, biological changes. The underlying disability—whether physical or mental—may not follow a progressive pattern like certain genetic or metabolic diseases, yet it can still bring about gradual shifts over time. A condition once considered stable, after early improvements plateau, may surprise us with unexpected turns.
Take epilepsy: the original brain lesion stays the same, but the periodic storm that disrupts delicate brain functions is a stress the brain does not forget. We are seeing that people with apparently stable genetic conditions, like Down syndrome, may experience early-onset physical and cognitive decline usually seen in the elderly. Cerebral injuries sustained long ago—from infection during pregnancy, birth trauma—can eventually destabilize the already fragile mechanisms of the brain, triggering unexpected psychiatric symptoms: aggression, depression, mood swings. Similarly, someone with a physical disability may face muscle atrophy, skeletal deformities, chronic pain.
Psychological Changes
Then come psychological changes. As a disabled person reaches adulthood, they naturally encounter new needs: independence, love, sexuality. These bring new problems and suffering, since their deepest desires often remain unfulfilled. Defensive reactions can emerge: withdrawal, rejection of people and activities, rigid repetitive habits, obsessive behaviors, constant pleas for reassurance ("Do you really love me, Mom?"), episodes of anxiety and fear. Sometimes full psychosis develops.
The key thing to understand: mental illness in a disabled adult rarely stems from the disability itself. Rather, it comes from having one's deepest wishes thwarted—from realizing that despite being an adult, you cannot live as you wish or as you see others do (work, marry). This distress is then compounded by our own lack of sensitivity and carelessness toward the relational life of disabled people, especially during their most fragile moments: adolescence and the move into adulthood.
The Missing Life Plan
Finally, existential changes. We all need meaning in our existence. That requires:
Often a mentally disabled adult has no life plan to work toward
- a life plan—a goal to strive for, something that drives and motivates us;
- relationships and communication with others;
- a welcoming, harmonious environment;
- the chance for continuous personal growth.
These are hard to achieve, especially for an adult with a disability. Often such a person lacks a life plan. Even if they have a job or some activity, the problem is not solved for good if we leave them in a static situation, where days repeat identically, programmed, purposeless, with no hope of progress. We know that standing still eventually means falling back.
Relationships can wither: tension and rivalry with siblings, impatience toward parents, and perhaps that one friend gets worn down by the same obsessive ideas and repetitive behavior.
As for environment: the disabled person watches interest in them fade. When they were small, everyone expected improvements and breakthroughs. Now the family is tired. They think they've done their duty or solved everything ("You have a job, your life is organized, and anyway, what's done is done"). Indifference and habit set in. Perhaps their flat, unchanging behavior is simply a mirror of our own.
Often, a sudden event disrupts whatever continuous, harmonious growth they have achieved: the loss of a loved one, hospitalization, placement in an institution, a job change, a move to another city. For them, environmental change is far more traumatic than for us. Such decisions must be made carefully, with gentleness, after thorough preparation, and with support in adapting to the new situation. It is often in the capacity to adapt that even a mildly disabled person shows the most fragility.
A disabled person does not remain a child forever
A disabled person does not remain a child foreverThese reflections are not meant to alarm families or add more pessimism to an already difficult situation. Rather, they should help us see one crucial fact: a disabled person does not remain a child forever. The harder we push them toward childishness, the graver the consequences of struggling with adulthood. When we ignore their new needs or treat them carelessly and superficially, we guarantee deeper harm.
We must recognize that yes, it is important to improve the practical circumstances of disabled adults—something we have been doing for some years now (school and job placement). But far more important would be a shift in mindset: learning to see the disabled adult wholly, not dismissing their existential problems as secondary.
Parents play the crucial role. By learning to treat their child as an adult, they teach everyone else to recognize that new dignity.
Knowing that biological changes can occur, that disability is never truly stabilized, will help us prepare for those shifts—and especially help us prevent the gravest psychological and existential changes that might otherwise follow.
To be sure, understanding adult needs is not simple. The crude disability classifications we use for children no longer apply, because the boundaries blur and the person becomes more individual, more themselves.
When we think about solutions, it becomes clear they must rest on institutions (the term understood broadly: family, protected workplaces, group homes, residential facilities) that can create personalized situations—flexible in structure, small, family-scaled—where communication with others is possible and where a life plan (for the disabled person and for staff alike) can be proposed and supported with real means.
We need family-sized institutions where communication with others is possible
We need institutions that are family-scaled and enable communication with othersPractically speaking, several areas demand attention.
Rehabilitation—understood as maintenance, as prevention of decline, and above all as growing, competent psychological attention to adult needs. The first two aspects are manageable; there are already structures and trained professionals (physical therapy, speech therapy). The real challenge is the third, where no specific expertise yet exists and it is unclear who should carry it out—family, doctor, psychologist, social worker?
Care and support—in healthcare, where it is usually inadequate, especially for severely disabled adults (medicine has no specialized branch for this); in psychology, meaning the creation of stimulating, living environments where an adult can develop even a minimal life plan, with staff who are trained and, most of all, themselves motivated; in organized volunteer efforts done well, not haphazardly.
Engagement with families—who need particular support, since as they age they meet fatigue and routine. We must extend to young disabled adults the same initiatives and protections we provide to children.
In closing, this reflection aims to combat a widespread tendency to treat disability as a childhood problem alone. It is time to marshal our resources and fill the organizational, psychosocial, and medical gaps we face as this crisis unfolds.