PERSPECTIVES | Love, obligation, siblings, and disability

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may 2018

Having siblings has its pros — and its cons. On one hand, you have someone to play with, an ally, a friend; but on the other, you have sibling rivalry, competition, and spats.

Growing up with a sibling with disabilities comes with its own unique set of challenges. In a series of interviews, documentary filmmaker Rachel Feichter discovered eight recurring themes in the experiences of siblings of people with disabilities, including feeling a need to be perfect, an inability to express their own feelings, and isolation.

“Truth is, I grew up with the heavy weight of responsibility, not only to make up for every one of [my brother’s] limitations, but to be wholly, completely un-needy,” Gina DeMillo Wagner explained to a friend when asked what it was like to be a sibling of a child with a disability. “If he was the special needs kid, I had to be no needs. And then there were the tantrums, violence, neglect, financial woes, my mother’s all-consuming depression.”

Parents often grapple with the sibling relationship themselves: “Are we asking too much...? What is the responsibility of a sibling for a sibling? When we are both gone, the burden will be passed down, along with the silverware and the photo albums, and [our nondisabled children] will be forced to take up where we left off,” Elizabeth Choi wrote of her autistic son and his two typical siblings in the New York Times.

Siblings of individuals with disabilities often find themselves becoming caregivers as well. “It is so hard to find and count on competent people to care for her that I had to quit my job and become her full time person,” Kira Volar writes of her sister with developmental disabilities in Tonic. “I love my sister and I'm happy to care for her, and I know I'm doing the right thing, the best thing. But I struggle daily with frustration and anger."

These relationships are complex and can be taxing, but they are not without their benefits. “The positive side is that these children develop some really good coping skills," Elizabeth Goulding-Tag, LMSW, explained in Parents. “They learn to shut out the reactions of others and to accept their sibling's behaviors as something that they can't control — and to love their brothers and sisters anyway."