I've spent a lot of time thinking about the problems faced by children who have a handicapped sibling. Because I've lived through these situations myself—and still do—I've always seen this as something worth discussing and working through. So when I was asked to write an article for the magazine on this very subject, I said yes without hesitation.
I've had to notice, and it troubles me, that these problems belong only to those who live them. Even parents, as a rule, give little weight to this side of things—out of fear, convenience, or simply because they're already overwhelmed by the known difficulties of daily life. But I don't think it's only parents who handle the issue superficially. My siblings and others like them often seem to pay it little attention too. I've watched many of them either accept burdens that are far too heavy, or else reject outright what amounts to simple cooperation between people sharing the same struggle.
People have often asked me whether, and how, I've accepted my brother. I've never known how to answer. I don't think you can squeeze all the anguish, frustration, and anxiety a sibling lives with into a simple yes or no.
None of us ever fully accepts or rejects the people we love. We love them for who they are: for their sensitivity and the affection they give us, alongside all the problems and worries they create for us day after day.
But if a parent—who chose to have a child—has a duty to accept that child however they are, we have had no such choice. We find ourselves suddenly immersed in a reality that demands maturity, understanding, sacrifice, restrictions and obligations that our peers are far from knowing or even imagining. I've often seen small children—too small—brought along to parties or gatherings for their handicapped siblings. I've always wondered whether it's fair to involve them and impose on them so heavily, a family burden so grave that even if it shouldn't be foreign to us, it shouldn't crush us either or steal the peace and joy that should mark childhood. They asked me to tell my story, but it was truly impossible to sum up in a single page everything I've felt since I was born, living alongside a brother with a handicap who, more than anyone I know, overflows with affection and joy in living. So I've chosen instead to set down some of my thoughts, hoping they might prompt others to explore and deepen the subject. And I hope that someone might find some benefit in my experience.
A Sister, 1980