When One Sibling Is Developmentally Disabled

I've almost made peace with the fact that we aren't hauling our kids down to my parents in Florida for Thanksgiving.

Actually, it's my sister Cecily I feel bad about. She's the one I don't keep in touch with enough. She's 39, and — deep breath — "developmentally disabled and legally blind." Those jargon-y words give only the barest outline of her experience of navigating the world. And my family's experience, too.

Cecily and Daphne Beal

Daphne Beal (right) and her sister Cecily, who is developmentally disabled and legally blind. Daphne says that when they're together, they revert to the things they've done since they were kids. Courtesy of Daphne Beal hide caption

itoggle caption Courtesy of Daphne Beal

Of course, there are no good terms: special needs, intellectually disabled, mentally retarded, brain damaged. The labels range from euphemistic to offensive. The best seem clinical and unemotional, as if not to burden anyone with the real difficulties behind the phrases.

But Cecily manages very well. She lives semi-independently in a community for people with developmental disabilities. She holds a full-time job caring for severely disabled people. Once a week she does what she loves best, helping in a kindergarten. She cooks and shops and watches movies on a DVD player with her nose practically touching the screen.

When we're apart, Cecily and I hardly speak. Not because of any conflict, just because talking on the phone isn't easy for us. She answers "yes" or "no" to most of my questions. I wind up monologuing, trying to make her laugh. I know in many ways her life continues as it has for years. So I feel strange telling her some story about my own life tumbling forward with work, parenting or travel while hers inches along. I worry that in midlife she's stagnating, not getting enough stimulus to grow. But I'm uncertain of how to change that. A trip to Vegas? Move her in with my family? Both?

When we see each other, we revert to the things we've done since we were kids. We make chocolate chip cookies. We swim in whatever body of water is at hand — pool, lake, ocean — no matter how cold. Sometimes I read to her, though not as much as I used to. Having kids of my own has changed things. Cecily is a devoted aunt. She's conscientious and responsible — and her hearing is excellent. During one Christmas party, she showed up at the bottom of a steep flight of stairs, holding my baby son awkwardly under his arms. I'd thought he was asleep. She looked at me and said dryly, "Screaming." I had asked her not to carry him down the stairs, but her tone said, "Don't you dare mention it."

In recent years, Cecily's role in the family has shifted away from being the center of attention. We all used to cater to her on vacations — taking her kayaking or to feed the ducks. But now, my young children are very good at being the stars of the family show, which is maybe why it's OK that I won't be at my parents' condo for turkey this year. Cecily will have the stage to herself. She will be beloved by my parents, our brother and his girlfriend, on her own terms. They'll go see the new Harry Potter film and play dominoes or card games every night.

It's a mistake I make too often, thinking it's about me. Not because of vanity — it's identity. Even after all these years, I can't shake the sense that it's just a fluke that my life isn't hers, and hers isn't mine.

Commentator Daphne Beal is a contributor to the recent anthology Freud's Blind Spot: 23 Original Essays on Cherished, Estranged, Lost, Hurtful, Hopeful, Complicated Siblings, and author of the novel In the Land of No Right Angles.

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