Saturday, December 4, 2010

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.


BabyWeightMyFatAss said...

Thank you for the RD article. I just keep reminding myself that it was a different time and lucky that we in the United States don't live in that era anymore.

Anonymous said...

I rarely watch Sunday morning tv but I saw that report. Really worth a view for those of you who haven't.

Thank you for emphasizing the changes since Molly's childhood, JoyMama. Progress is being made - culturally and as a society.

Rose and Joy are both beneficiaries of that progress - which credits not only the professionals who have NOT advised institutionalization but you and JoyDad.

No doubt Rose and Joy will carry-on the progress into the next generation. Barbara

JoyMama said...

BWMFA - the article adds extra depth to what was presented in the Sunday Morning segment, doesn't it?! I was glad to have found it.

Barbara - we rarely watch either, but the holiday weekend had changed up our schedules! Good timing all around.

Lynn said...

Oh Lord those stories make me crazy. I heard about the Henrietta Lacks story but not the other. I don't understand some people pining for a "simpler time" and getting all nostalgic...I'm with you...soooo glad to be living in the 21st century and hoping that those in the future don't think badly of us.

Rachel Cohen-Rottenberg said...

Amazing that I just happened upon the Molly Daly story earlier today, before reading your post. I like synchronicity like that!

It all brings to mind the story of my great-aunt Sarah, born impoverished in 1908, with cerebral palsy, and from what I can gather about her early years, autism. She was consigned to state institutions from the time she was 11 and died in a state mental hospital of TB at 25. No one in my family ever spoke of her, and I only found out about her during a search of census records. She had been entirely forgotten. My husband and I learned that she was buried in a Jewish cemetary rather than a pauper's grave, but without a headstone, so we recently had one made to mark her resting place. I have also found two photos of her, which are very precious to me.

We are indeed lucky to live in these times. We have a long way to go toward full respect for disabled people, but we've come a long way since my aunt Sarah's time. A good long way.

JoyMama said...

Lynn -- good point about the future. I wonder what are the main issues on which people are going to be absolutely appalled when they look back on the early part of the 21st century? (Any guesses?)

Rachel -- Thank you for telling the story of your great-aunt Sarah. I'm so glad you have those photos, and arranged for a headstone for her! These stories and memories are so important -- we need to know that it happened, that it's possible, that we mustn't ever, ever go back in that direction.

Anonymous said...

I want to thank Rachel, too, and for what she did to respect her ancestor's memory. (So like a genealogist.)

Also important to say - we must never go back.

Lynn's comment about judgment from the future struck me, too. I have been thinking about how it might not be fair to judge those of the past by our current standards. I do believe our current standards of care are close to the most humanistic possible if not universally implemented. Barbara

Rachel Cohen-Rottenberg said...

Thanks, JoyMama and TherExtras. I hope that making things better in our time gives some peace to the souls that came and suffered before us. It certainly gives me a lot of peace to see things moving forward.

telemommie said...

Catching up on your last few entries. Great as usual. This is a subject I feel very strongly about. I am so grateful to have my girl with me and to never have had anyone suggest otherwise. Whenever people lament the times we live in, I always point out how much better things are for the disabled and their families. I recently saw a photography exhibit of abandoned "mental" institutions. Very haunting, although I was fascinated by their names and how the terminology told a story about how society's attitudes have changed.

Anonymous said...

powerful post, heartbreaking and hopeful at the same time. i knew about molly, but never heard the story of the Lacks family.

as for Joy and Rose - i am truly touched by them, both intelligent, really impressive, magnificent. no doubt.

Viktoria said...

"With an eye to the past"
There are several articles and on the top of the page there are slideshows representing the changes in each decade in the 20th century. Perhaps the most shocking is this one: "In the 1940s, Dr. C. Anderson Aldrich, a highly respected
pediatrician at the Mayo Clinic, advised that mothers should be
separated from a child with Down syndrome (Mongolism was the
term used then) immediately after birth."..."Aldrich advised physicians to lie to the mother — to
tell her that the baby was not strong enough to be brought to her
and must stay in the nursery for a few days. Then the physician
should meet with the father, relatives, and, if possible, a clergyman
to develop a plan for placement that would be presented to the
mother as a fait accompli."