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This parasitic but long-wandering blog has found its new host.  Comments are open again, and I’ll resume posting this weekend.  But first, let us take a moment to mourn the passing of Rosemary Kennedy, who helped change the way Americans understand mental retardation but was subjected to a barbaric frontal lobotomy along the way.

Rosemary Kennedy, the oldest sister of President John F. Kennedy and the inspiration for the Special Olympics, died Friday. She was 86.

. . . Her retardation may have stemmed from brain damage at birth. But in her own diaries before the lobotomy she chronicled a life of tea dances, dress fittings, trips to Europe and a visit to the Roosevelt White House.

Preserved by her mother’s secretary, the diaries came to light in 1995, in a book. And while they revealed no great secrets, the three diaries—written between 1936 and 1938—described people she met and concerts and operas she attended.

As she got older, however, her father worried that his daughter’s mild condition would lead her into situations that could damage the family’s reputation.

“Rosemary was a woman, and there was a dread fear of pregnancy, disease and disgrace,” author Laurence Leamer wrote in his book “The Kennedy Women: The Saga of an American Family.”

Leamer wrote that Rosemary had taken to sneaking out of the convent where she was staying at the time.

Doctors told Joseph Kennedy that a lobotomy, a medical procedure in which the frontal lobes of a patient’s brain are scraped away, would help his daughter and calm her mood swings that the family found difficult to handle at home.

Psychosurgery was in its infancy at the time, and only a few hundred lobotomies had been performed. The procedure was believed to be a way to relieve serious mental disorders.

Leamer wrote that Rosemary was “probably the first person with mental retardation in America to receive a prefrontal lobotomy.”

But Rosemary was reduced to an infant-like state, mumbling words and sitting for hours staring at walls, Leamer wrote.

So if you know someone with mental retardation who’s not locked away, who’s living a rich, full life among his or her nondisabled peers (and I’m going to go swimming with such a person in a few minutes myself), thank Rosemary and her family. 

Posted by on 01/08 at 11:15 AM

  1. It seems like there was a lot more mainstreaming in the dark days of my youth.  I remember going to school with “special ed kids” (in the 60s) which often including children with learning disabilities as well as Down’s syndrome.  Although they had separate academic classes, we interacted with them, rode the bus with them, and came to know them at recess, in phys ed, art and music classes.  Often, if they lived in our neighborhoods, we knew them and their families outside school.  Although some kids behaved like assholes toward them, most of us just accepted them as who they were, and some of the more compassionate among us even mentored them.

    Am I wrong, or does it seem as if those
    times came and went pretty quickly?  The changes to the mental health laws in the 70s gave people and government carte blanche to kind of throw these folks to the wolves.

    Posted by Riggsveda  on  01/08  at  01:03 PM

  2. Way back in college I read about her and was moved to do a version of Antigone where the heroine was to be lobotomized instead of sealed in a cave. Got distracted and never finished it, but it still seems scarier than any physical torture. “Of Mice And Men” frightened folks with its uninformed prejudice, and “One Flew Over The Cuckoo’s Nest” probably only inspired controlaholics with its neat final solution for the recalcitrant. Why we shun and fear those whose retardation is only mental, while reelecting folk who are morally challenged, is left as a problem for the reader.

    Posted by Ayn Clouter  on  01/08  at  05:37 PM

  3. Riggsveda, maybe the schools you went to were more progressive than the ones I attended.  The special needs class I remember was for kids with relatively mild needs: I never saw kids with greater impairments in my neighborhood.  Obviously, Michael could give a *real* synopsis, but my understanding is that in general, before Public Law 94-142, which was passed in the 1970’s, people with developmental disabilities did not have a right to a public education.  The consultant who used to work with my daughter told me stories about his autistic brother who would get thrown in the closet at his public school--he was echolalic, so his family found out b/c he’d repeat what was being said to him as he was locked in.  This was on Long Island in the 1960’s, FWIW.

    Posted by  on  01/08  at  08:30 PM

  4. emily--

    Good God.

    Posted by Riggsveda  on  01/08  at  10:02 PM

  5. Riggsveda, I suppose it all depends on where you grew up.  I’m with Emily on this-- I went to public elementary and junior high school in New York, 1966-74, and I saw special needs kids only on rare occasions when the school did something collectively, like a parade or a fire drill.  There was no mainstreaming-- just a separate classroom.  Public Law 94-142, originally called the Education of All Handicapped Children Act and now called the Individuals with Disabilities Education Act, was passed in 1975, but implemented only slowly and fitfully; when Carter took office in 1977, for example, Joseph Califano, Secretary of Health, Education, and Welfare, completely refused to issue guidelines for the 1973 Rehabilitation Act, and even though the IDEA language speaks of a “free appropriate public education in the least restrictive environment,” it generally wasn’t until the 1990s that “least restrictive environment” was understood to mean “the regular classroom” as a default position unless the student’s disabilities required another placement.  There’s a nice capsule history of disability rights here (that’s a link).

    But that’s not to say that the law is implemented the way it should be.  There are plenty of districts that bear out Riggsveda’s perception of a general retrenchment; when Janet and I considered taking jobs at the University of Illinois at Chicago (we chose Penn State instead), we learned that there wasn’t a single school district in Chicago that would give Jamie a place in a “regular” classroom.  (He’s been mainstreamed since kindergarten, and is now in a sixth grade classroom with various kinds of “pullout” ranging from assistive PE to language arts.)

    And Ayn, what’s all this about reelecting the “morally challenged”?  Is that some kind of snarky anti-torture remark or something?

    Posted by Michael  on  01/08  at  11:25 PM

  6. I’m a bit worried about the deification of mental health professionals that is creeping on us recently.  I am fascinated by the advances that have been made in the study of “mind”, but I worry we are giving them carte blanche in an area that is still in its infancy.

    It’s all to easy to mix up the science and the art and give people control when they’re likely flailing around themselves…

    Posted by Ryan  on  01/09  at  07:30 PM

  7. I am an attorney who works for a non-profit agency that provides services for personw with mental illness and other disabilities.  I have yet to see evidence of “deification” of mental health professionals. I DO see families grasping for whatever new hope may arise to help loved ones navigate this world.  Both my parents have pysical disabilities, so perhaps I have a hidden advantage in realizing the human resources that we waste, either because we don’t understand the potential, we haven’t structured an environment that permits all persons to contribute to each’s capacity, or because we somehow fear those who are less powerful than we are.

    As she got older, however, her father worried that his daughter’s mild condition would lead her into situations that could damage the family’s reputation.

    “Rosemary was a woman, and there was a dread fear of pregnancy, disease and disgrace,” author Laurence Leamer wrote in his book “The Kennedy Women: The Saga of an American Family.”

    Some things have not changed.  We still fear the consequences of normal, healthy human sexuality (including romantic or marital love), especially when the persons who might gain pleasure and other benefits are atypical.

    Posted by Ereshkigal  on  01/09  at  08:07 PM

  8. My understanding is the same as Ereshkigal—that Joseph Kennedy was very worried about the consequences of his daughter’s sexuality.  However, at the time, a lobotomy was considered to be a “state of the art” innovative cure all for certain types of conditions.  In the course of my professional career I met a federal judge, from a wealthy family, who authorized a lobotomy on his “wild” and retarded son, probably for many of the same reasons.  The operation was a disaster and the son became more or less incapable of caring for himself.  My husband’s aunt’s husband, also the son of a wealthy family (a surgeon), also was subjected to a lobotomy—but with minimal adverse cognitive impact.  There is a movie—I think it’s called Suddenly Last Summer—that is really “about” homosexuality, but in which a wealthy widow (Katherine Hepburn)wants to subject her niece (Elizabeth Taylor) to an innovative surgical treatment for her “delusions” (i.e. regarding the sexual predilections of the widow’s son, who was murdered while on vacation with the niece and used the niece to procure young male sexual partners).  Most likely that operation was a lobotomy. 

    In other words, doctors sold lobotomies to wealthy families as a way to control their wayward children.  No doubt a lot of less than wealthy people suffered as well.

    Posted by  on  01/10  at  10:52 AM

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