Sibling Stories

Joy's big sister Rose (in 3rd grade, age almost-nine) was assigned this past week to write a poem. Unprompted, she chose her sister Joy as the subject of the poem. She neither asked for nor received any suggestions other than confirming how to spell some of the longer words.

I wish I could blog the whole poem here, but I can't do that without blowing the pseudonyms. Joy's full real name is part of the poem, and I can't remove/replace it without making it something considerably other than what Rose wrote. But I can tell you that she described her sister using the words "intelligent" and "really impressive" and "magnificent."

I don't know if it's actual perception or wishful thinking, and I don't really care. It captures something of the eyes through which Rose views her sister -- eyes that simply shine with love.

I have to think of two sibling stories I've encountered recently, from generations not so long past, that started in circumstances very different from ours.

One story is a minor strand in the amazing book The Immortal Life of Henrietta Lacks, by science journalist Rebecca Skloot, which I read earlier this fall. (Here's a fine review of the book.) Henrietta Lacks was a young woman in Maryland whose cancer cells, taken without her knowledge or consent shortly before her death of the disease in 1951, led to a huge list of scientific advances and a multi-billion-dollar industry in cell culture -- at no financial benefit whatsoever to the Lacks family. One small part of the difficult history of the Lacks family: Henrietta's oldest daughter Elsie had epilepsy and substantial developmental delays, and was placed in a mental health institution, where she died two years after her mother's passing. Or perhaps I should say, an overcrowded hell-hole of an institution called the Hospital for the Negro Insane of Maryland, where she was almost surely subjected to brutal experiments -- a practice more common in those days than we'd like to think. Elsie's youngest sister Deborah had no idea about all of this (either her mother's story or her sister's) until Rebecca Skloot started unearthing the history, and then Deborah joined Rebecca on the quest to find out about her sister, and so much more. It was only this past May that Elsie Lacks' remains were relocated to the family plot and honored with a proper headstone -- little enough that anyone could do in her memory after all she most likely suffered.

Another is a story that the JoyFamily happened to catch just this past Sunday on CBS Sunday Morning. This one was the sibling-story of Jeff Daly, whose little sister Molly was sent away in 1957 to an institution (one that passed for "enlightened" at the time) due to her developmental disabilities. "Where's Molly?" he'd ask his parents, and they'd tell him "Molly's not here any more." Eventually he stopped asking, and the memories receded until his parents' deaths in 2004. He found Molly's Social Security card in his father's wallet, enabling him to begin a search for his sister -- who turned out to be still alive and residing in a nearby group home. They are now part of one another's lives once more, feeling very blessed to be able to be family again.

Rose was watching this with us, and struggled to take it in... that families used to be advised to send their Joy-children away and be told not to visit them, that everyone would be better off if you'd just forget about them. (Oh yes, she made the connection immediately). She couldn't imagine Joy living anywhere else, when Joy so very clearly belongs with us!

I found out even more of the story when I started poking around online -- there was a Reader's Digest article in March 2006 that gave some details that I'm glad Rose didn't hear. That Molly disappeared suddenly, when Jeff was six: one meal she was at the table, and the next she wasn't. That he used to get sent to his room for asking what happened to her. That their mother only ever visited Molly once and seemed to have been relieved to send her away because, as Jeff was told when he started interviewing relatives to make a movie of the story, "a disabled child wasn't right for her perfect life." That Jeff and his wife Cindy, even in the mid-2000s, had to fight to change laws that were preventing other families in their situation from finding relatives who had disappeared into institutions like Molly had.

I'm so grateful that we live when we do, and where we do. That the Joys of this country have a legal right to a public education. That we have not personally encountered a single soul, doctor or educator or family or acquaintance, who has suggested that Joy would really be better off living somewhere else without our interference (of course such attitudes do exist, it's not hard at all to find them online! but nobody in our immediate circle has even hinted at it. Which is good.)

We still have a long way to go. Warehousing happens. Abuse happens. Much is still wrong. But we've come so far, so very far! And sisters like Rose and the "really impressive" Joy, and their families and communities, are so very much the richer for it.