«I don't know why, it's stupid, and it makes me angry, but I'm still ashamed of it!» That's what a young girl whose brother has Down syndrome wrote years ago, trying to explain why she couldn't invite schoolmates home to study.
Is it right to call it «shame,» or would it be more honest to call it unease—fear that «others» won't understand that close, natural bond built since childhood; or dread of being «made fun of» in a way that would wound both her brother and herself?
That letter and testimony capture only part of what brothers and sisters of people with disabilities live through. It gets harder when there are only two children in the house—one healthy and one disabled—because then the comparison is constant and unavoidable. Parents' hopes for the healthy child are greater, unspoken, yet evident and understandable.
Talking openly about it feels almost impossible: «How can I tell my parents about my pain and my problems? They've already suffered enough; I can't bear to add my burdens to theirs. And besides, I'm not sure they'd understand...»
It's natural to feel suffocated, then—unable to enjoy the carefree life you deserve, even though you love your brother or sister deeply.
It's natural to feel suffocated, then—unable to enjoy the carefree life you deserve, even though you love your brother or sister deeply.So what happens is that the suffering, the unease, the insecurity of these siblings goes unspoken. No one talks about it at home or anywhere else. I know of teenagers who hid their disabled brother or sister from classmates, friends, and teachers for years.
I know of siblings who, as adults, struggled with life, work, relationships, and love because of deep psychological wounds rooted partly in never having been free to be children and teenagers fully. The heavy atmosphere at home. The constant comparisons. Responsibilities thrust on them too young, or carried in silence. Parents' devotion poured so heavily onto the more fragile child. Worries presented with dramatic urgency but never explained. Anxiety about the future dropped on their shoulders through careless remarks, even if spoken without much thought: «You'll look after him when I'm gone, won't you?»
No wonder they feel crushed, suffocated, unable to enjoy the carefree life they deserve—the life they have a right to—even as siblings of a disabled brother or sister, even though they love them deeply.
But it's not right, and it needs to be said. We need to find ways to talk about this before it's too late. It's not easy, and sharing a burden for which no one is to blame is part of family life. But there are questions that demand attention, care, and honesty.
I don't pretend to solve in a few paragraphs a problem that looks different in every family and would need case-by-case attention.
I'm not here to pile more guilt onto already burdened parents.
I want only to try to highlight the mistakes to avoid—things that might help you reflect, talk about at home or with friends, or open a dialogue with the people most affected. Your reactions, thoughts, questions, and comments on this delicate and important subject are always welcome and may be published.
Here, then, are some key points among many that could be listed:
- Learn to speak about your sibling's disability. Learn to tell the truth as early as possible—in simple, clear sentences, explain what you can about the effects of illness, a difficult birth, a virus, or whatever caused it. If the disability remains a mystery even to doctors, say so: tell them it's an illness whose origins or causes or cure we don't understand yet.
These explanations help siblings, but they help parents too.
It matters so much to call things by their real names, because then the whole family can face reality directly and lift that heavy fog of uncertainty that so often weighs on the young.
After consulting competent doctors, tell your other children there's no risk to their own future children.
In most cases, these aren't inherited diseases.
This opens the way to talk about dating and marriage, reassuring them that they will certainly find someone who loves them, even though they are the sibling of a disabled person; that being loved depends on how lovable you are, far more than on whether or not you have a «different» brother or sister. - All parents want their children to do well in school. That's a normal wish. But it's not normal to demand that they do well in school simply because their sibling is a child who will learn very little at school.
It feels like «emotional blackmail» to tell your daughter: «At least give me this satisfaction!» Plenty of teenagers struggle to pass all their subjects. There's nothing strange about it happening to someone who has—let's face it—an extra reason not to sail through. - It's natural to ask children to help around the house; it's actually good to expect each person to do their part. But I've noticed parents of disabled children tend to swing between two extremes: either asking nothing at all, even showering them with excessive permissions and gifts to help them cope better, or asking too much—especially tasks done alongside the disabled sibling, out of fear they'll escape the responsibility parents want to share at any cost. Both extremes need to be balanced, though I know that's not easy. It's very hard to find the right equilibrium, and harder still to notice if you're leaning too far one way or the other. It will help to talk about this with trusted friends—real ones—and ask them not just for their thoughts but to help bridge the gap between you and your children. Kids often talk more easily with friends than with their parents about these things.
- «What will happen when we're gone?» This question haunts every parent of a disabled child, and it usually ends up crushing the shoulders of siblings—especially sisters. I've known many sisters who, without ever freely choosing it, gave up the idea of marriage from adolescence onward because they felt «bound by love to stay with him.» There are far more of them than people realize. If this happened in the past, I think it's critical to use every ounce of strength and conviction to make sure these «obligations of love» don't happen anymore today. If such a calling does exist—and it may—it should be explored deeply by someone outside the family, someone competent and wise enough to tell whether it's truly a free choice.
But why not work toward planning your disabled child's future care while you're young parents, so this burden doesn't fall on your other children later?
Why not join with other parents to push local authorities—or parent associations—to set up these services urgently, before more weight lands on already exhausted siblings? I can imagine some of you will react strongly to these questions, which might sound rhetorical. I know very well that the current situation, so lacking in this area, offers little hope. But I'm convinced that ignoring the problem won't solve it, and neither will hoping your other children will take it on—unless they've freely and openly chosen to.
What will be their rightful task is to make sure their disabled brother or sister is well cared for, respected, and supported in a calm and dignified setting; to visit regularly and take them along on vacation or a family celebration now and then. But nothing more than that, because it will already be a significant commitment, and they'll be more willing to give it precisely because they're free to love them in the right measure.
- Mariangela Bertolini, 1990
My Prayer
Lord, lover of life,
help the weakest.
It is so hard in life
not to go to school;
there is nothing that can be done.
I hate loneliness
and being without friends.
It is so beautiful to have
real friends from school
that is what I want to have.
How do I go on...
I need to make
new friendships,
but how do you do it,
tell me.
You are the only one inside me;
help me in the moments
least expected
give me your faith please.
Please, how can I do it
without you,
how would I...
give me your advice
tell me in my heart
because I feel you.
It is very important what
you want to tell me:
maybe it is the good advice
that you are
kind, dear and nice
and affectionately beautiful;
help me at least you do.
Tiziana di Primio