Parallel universe

Surprisingly similarI should stop being surprised. Every time I read about another family with a member who has a disability, I am struck by how similar their story is to mine. I see the same emotions, the same experiences and the same themes in every family that lives with disability.

The story told in Twin, a memoir by Allen Shawn, is no exception. Shawn, a composer and professor, writes of his twin sister Mary, who has autism. When they were eight years old, she was abruptly removed from their home and went to live in an institution.

Like my Uncle Melrose, Mary was sent away without notice to her siblings. In my family’s case, my uncle was declared a ward of the state and sent to a state school when he was 15. His parents didn’t tell my dad what they were doing and he was devastated by their decision, just as Allen Shawn was by his own parents’ actions.

Lack of options

Even though Allen Shawn’s saga played out in the 1950s, his family faced the same lack of options that my grandparents did in the 1930s. There were no services other than institutionalization available.

The Shawns, like my dad’s family, may have wanted to keep their home intact, but they couldn’t cope with the special needs of their child. There were no educational opportunities in the public schools for Mary and Melrose and there were no social services.

Legacy of grief and guilt

In Twin, Shawn writes that the sorrow that his parents endured seeped into his own experience.

As an adult, he realized that he was still “carrying the burden” of the decision his parents “had made all of those years ago, one I am sure they agonized over and continued to agonize over ever after, to send their child to live away from the family. I carried their agony with me and I carried their guilt…”Twin trees

In the same way, I took on the burden of pain and grief that my father and his family felt when Melrose was sent away. No one asked me to; it just turned out that way.

Perhaps that’s the way these things play out; it takes more than one generation to work out the anguish and heartache that comes with having to institutionalize a child with a disability.

Unbreakable connection

It is understandable that Allen Shawn felt close to his twin sister. Indeed, he believed that the connectedness that began in the womb endured throughout their lives — even though they lived apart.

Although my dad and Uncle Melrose were not twins, there was a very strong bond between them. Dad took care of his younger brother; he helped him dress and eat and go to the bathroom and he defended him from neighborhood bullies.

To a lesser extent, I felt connected to my uncle. Even though I didn’t find out about him until I was in my teens, I never forgot about him. And when I moved to the city where he lived decades later, I knew I had to find him.

[Author’s Note: To demonstrate how much the world has changed, the New York Times ran a piece about a Canadian program that offers support networks and services to families with a disabled member. It’s a model that needs to be replicated in this country and elsewhere.]