Thank you—truly—to all of you who answered our questionnaires with letters and testimonies. Thank you to those who came to our September gathering. Your contributions made it possible for us to put together this issue of Ombre e Luci, the third dedicated to you (here and here are the previous ones).
Yes, it is true, as some of you have said, that it is not easy to speak of what lies most intimately in your heart, of what you have lived through, often alone; it can even be impossible to put certain things into words.
Yet silence on our part might seem like indifference, or fear of misstep—of touching a nerve, of causing offense, or simply of hurting you by probing where you would rather we not.
So we reached out only to those among you who felt the need to «speak of it,» even if only for a moment. We were moved to do this by letters we had received and conversations we had overheard, by some heartfelt and urgent pleas to find living arrangements for a brother or sister left «alone,» who could not be welcomed into a family of their own (young couples with small children).
Now it falls to me to try to summarize the questions you have wrestled with and the answers you have given—frankly and realistically—both in the questionnaires and during our meeting. Only twelve of you were there; perhaps that is exactly why the conversation was so rich, so honest, so full of affection for your disabled brothers and sisters and for your parents.
You smile toward your own futures while staying close to them
Listening to you, I was deeply moved as you told your stories—sometimes with a certain humor—of your difficulties. You created a warm atmosphere among yourselves right away, not stiff or guarded, even when you spoke of the burdens you sometimes carry. You smile toward your own futures while staying close to themWhen you spoke of your disabled brothers and sisters, you spoke with genuine brotherly and sisterly affection. Some of you mentioned a touch of jealousy, especially in your early years: your parents' special attention to them left you feeling a bit fragile, but at the same time it made you more responsible. Others noted how hard your parents worked to ensure that your disabled sibling would never weigh on your life—to leave you completely free from that responsibility. All of you said—and I believe this is the heart of it—that you have drawn from the situation in which you grew up an inner strength that has made you more mature than your peers. You have learned to value what truly matters in life, leaving behind the carefree innocence of childhood far too soon.
As I listened, I had the sense that you deliberately chose to pass over the hardest moments—for some of you, the terrible ones—that you have lived through. I admired your courage and your quiet respect as you listened to whoever among you faced a particularly difficult situation. It seemed you were saying to one another: «All things considered, it didn't go so badly for me.»
There was one subject on which you all agreed: your parents' over-protective attitude toward your disabled brother or sister. From your perspective, mothers and fathers should be more demanding. They should not simply let your siblings do and become what they will; they should scold them more, make them do what they can on their own instead of stepping in to do it for them. Most of all, you wish your parents would listen to your advice and allow you to show them that your disabled siblings behave better with you, do things your parents cannot even imagine.
And you are right: you are. But your parents never had anyone to help and guide them at the crucial moment—in that difficult journey toward teaching your siblings independence. Out of love, out of too much love, they thought this was best... that this was the right way to act. And now that you are grown and could do better, they will not listen to you. The same thing happens with parents raising younger siblings alongside older ones.
But I think you must not give up. If the parents who read these words can understand—without taking offense—that there is some truth in what you propose, they will also be able to listen to you, to let you try, and to learn from you.
Another important subject came up: how much and in what ways the future of your disabled brother or sister (after your parents are gone) will fall to you.
It seems to me that, aside from a few exceptions, you all showed genuine care in saying that you will not abandon them, that you will work from now on to help your parents prepare a decent and welcoming «place to live» for them. But you do not feel able to say that they will be able to live in your own future families (though some of you left that door slightly open). You will have the duty to remain close brothers and sisters, to follow their lives and to show them your affection always. Yet you are very worried to find, together with your parents, that places of care and welcome hardly exist. This realization has spurred some of you to make your voices heard loudly—so that you can be responsible brothers and sisters in love, but not prisoners of love.
The pages that follow offer some of your testimonies. They are the shadows and the lights scattered throughout the lives of some of you.
Most of it—as one sister rightly wrote—cannot be put into words. This issue is meant simply as a call to parents, to friends, to all who walk beside you, to educators and those in positions of civic responsibility: do not forget your struggles, your fragility, your hidden pain. And recognize and honor your courage.
With great affection and esteem,
- Mariangela Bertolini, 1996