Why does the moment of personal care—that intimate contact with your child's body—deserve such attention?
Intimacy with another person's body is fundamentally important because, when handled well, it teaches us to value the body entrusted to our care. To help a young person accept these delicate moments, we must convince him that his body is beautiful, that it matters, and that caring for it is therefore essential. Even if wounded or ill, his body is "a temple of the Holy Spirit" and thus always worthy of love and respect. The body is the precious vessel of his personhood. With that in mind, it becomes natural to wish to safeguard both his body and his dignity—and to think deeply about what intimacy means.
How do we define intimacy?
Intimacy is everything that makes up a person's individuality—all that belongs to him exclusively, on the physical, emotional, and spiritual plane. Unfortunately, for a disabled person, intimacy is necessarily more limited and often must be shared with parents and caregivers. This does not erase intimacy; it remains intimacy if shared with only a few trusted people who always respect his modesty—both inside the home and in any care setting, shielded from outside eyes. We demonstrate respect for a person's intimacy by adopting what I call "mindful attention": deliberately avoiding any gesture that might breach his privacy. This means knowing when to close a door, draw a curtain, or choose gentle language. In general, it means simply putting yourself in his place and treating him as you would wish to be treated (a practice always worth the effort).
But respecting intimacy goes far beyond the physical body. There is respect for the person's will, his inner life, his spiritual life, his feelings. Not making decisions for him without his consent. Accepting that he may not confide everything to you. Honoring his tastes, his little quirks, his small vanities—these are all delicate matters.
Can personal care become a meaningful moment?
The first goal should be to transform bathing and grooming into a time of relaxation and pleasure—a chance to forget the hardship of disability, even briefly. You can achieve this by using pleasant products: scented oils, soft soaps, bath salts. Add a gentle massage to the back and neck. Include music. Do whatever makes the experience more enjoyable. Above all, avoid letting bathing and grooming become a tiresome chore, a routine to rush through. This intimate moment between parent and child is also a precious opportunity to show affection and tenderness—and to speak. To say something that helps the disabled person feel that his suffering is understood: "I know it's hard for you to accept that I do these things for you." Or to make him feel valued: "You have such soft skin. Your hair is beautiful. You're making real progress." Care of the body can become a vehicle for transmitting affection and tenderness.
Can we teach modesty?
This is fundamental in education, especially for young people with intellectual disabilities who struggle to contain their affection. In ways more or less intrusive, they may make others uncomfortable, but more importantly, they can put themselves in serious danger if their excessive way of showing affection is mistaken for provocation. It is therefore essential to teach them modesty in gesture and feeling from childhood onward.
For example, you might explain that his body belongs exclusively to him and that no one—except during necessary moments of care and hygiene—should touch him or stand too close. You can tell him that certain parts of the body, though nothing to be ashamed of, are "private" and should not be shown in public. Or: "We don't hug everyone we meet, or throw our arms around strangers, because that's the rule for living together respectfully." Without needing lengthy explanations, the young person grasps that these are rules to follow in order to get along with others.
How do we protect his privacy when he's outside the home?
There has been real progress in recent years in hospitals and care facilities. Intimacy is a right for everyone, but in the repetition of daily routines, nurses and doctors can forget this fundamental principle. It becomes the parents' role to remind them—gently and tactfully—of this basic right and to suggest another way of proceeding. Even as they acknowledge the efforts made toward better care for their children, parents must be able to speak up about their concerns. Often, though, misunderstanding sets in: on one side, parents made sensitive by their suffering point out errors too aggressively; on the other, medical staff tend to see parents as perpetually demanding. Sometimes it's a matter of language, a misreading of intentions from both sides—something that could be resolved with gentler, more thoughtful speech. Better still: a carefully written letter.
There's also the question of finding the right distance in a helping relationship, isn't there?
Absolutely, and it exists both at home and in institutions. For many people with physical disabilities, it is immensely painful to allow another person into their intimate space, especially from adolescence onward. Until then, parents are naturally the most appropriate caregivers. But in adulthood, perhaps they are no longer. If bathing becomes a source of tension or conflict, it may be time to suggest seeking outside help. Consider a daughter who has become too heavy for an aging mother's back and arms, or a young man who struggles to control himself in the shower. For parents, it is a sacrifice to accept that a stranger will care for their child in these intimate moments. And there is the financial cost. But the goal is to find whatever arrangement keeps the moment as calm and relaxed as possible. In the end, each family will find its own way to balance respect and intimacy. What matters is doing it with all the care and tenderness you can muster.
Edited by Agathe Jarry, 2009
(Ombres et Lumière no. 169)
My Daughter's Puberty Unsettles Me
When Laura became a teenager, for years I wanted her body not to grow. It disturbed me that my daughter could develop a woman's body while having the mind of a three-year-old. I was afraid to see the signs of womanhood on her disabled body. The arrival of her first period, especially, destabilized me because Laura could not manage it on her own. I had to change her five times a day. Today Laura is in a care facility, and others have taken over. D. Barmi(Ombres et Lumière no. 169)