Last night, my neighborly friend and I watched "Autism: the Musical" on her tivo'd TV. She was eager to see it for her own reasons and willingly complied with my request for a viewing. (I was surprised, yet thrilled that I could rope her into a viewing...I ought not to give her so much shit for slow-running. A variant, perhaps, on slow-talking? She's the only person who's ever gotten me to run for more than an hour consecutively, and for that she deserves an award.)
The most fascinating dynamic was the mother who seems to suffer from a form of Munchausen-by-proxy syndrome. The excising of her son's piece from the dress rehearsal of the "Miracle Project" led her to throw a huge fit. While his autism diagnosis was surely legit, this mother turned the son's issues into a scene...about her. And yet, as I follow these vaccine listservs, I start to feel that it's a fine line. How do parents adequately defend and protect their children without making their fight about some sort of retribution for their (sometimes perceived as) unfair lot? Is this diagnosis, is this crusade about the child, or does it turn into something else? To be fair to many of the parents portrayed, there were a lot of parents who were clearly invested in their children, but seeing this mother (whose husband had denigrated her behavior earlier in the documentary, at which both running-partner/neighbor friend and I were horrified for his sexism, yet subsequently sympathetic because this mamma was a bit out of control over her son's well-being) made clear that the child's condition was surely not helped by his mother's melodrama.
Jenny McCarthy has been all over the media discussing her books about her son's autism (and purported recovery). I may be judging her too harshly, but the frequency of her media appearances [Larry King, Oprah, some E! tv show that I watched a clip of...etc...] makes me leery of her intentions. A popularly cited (among internet discussions) statement, "My science is named Evan," merits closer attention. The emphasis is on "her science," a somewhat unreliable scientific source, instead of information a bit more tested. The immediacy and relevance of her own empiricism and witnessing of her son's changes and transformations count far more than any other pieces of evidence. (Perhaps you ought to watch the YouTube clip (uurrggh, can't find full clip with this statement but here's this and here)). I can't quite understand why America is persuaded by an actress. [Wait, what? Yes. Ok, yes, I am clear. Or rather, unsurprised, but not clear.] I have not actually seen Jenny McCarthy in any movies or TV shows, though I do remember her stint as a Candie's shoes' girl (sometime in the 90s) -- she sat on the toilet surrounded by shoes, in magazines -- print stint. I'm sure she's a lovely woman, but what exactly persuades the public that this woman's knowledge, as compelling as it may be, is more reliable or authentic than any other forms?
It's not so much that I want to discredit her, but rather am trying to understand why people are persuaded by her. Highlights of the clip include: after Jenny explains that she learned about autism from Google, Oprah says, "Thank god for Google! Thank god for Google" Yeah...thanks, Oprah. Oh, and McCarthy announces she got her "degree" from Google. The wonders of internet research.
I am not a syncophant of science. I think science is highly fallible, as with many other things in the world (of human interpretation) --- but why? Why? Jenny announces she "knows what's going on in his [Evan's] body" because she's analyzed it all. The proof for her is embodied in her child, whose behaviors have changed and shifted as she has monitored and altered his diet. It seems that there might be other interpretations of the changes she's witnessed. But her ownership of his body and his disorder (disease?) give her authority. Oprah reminds us that Jenny "wrote the book," but acknowledges it's what "she believes" and it doesn't mean "it will work for all children". It is clear, in spite of the brief caveat, that Oprah is persuaded by Jenny's passion and dedication. What I can't understand is why Oprah's "word"/world is more convincing to people than other media forms. Why are Americans eager to consume the negative and dismiss the positive? What is so reassuring about the public proclamations from the individual testimony? Why do people want so badly to believe her over anybody else? Why is there arbitrary belief in science, when it's convenient (oh, fluoridation, antibiotics, hand sanitizer, etc...why are these people not rallying against all modern conveniences/advances)? Oprah and Jenny even acknoweldged with chemotherapy, it might not work for everyone, but that they'll "give it a try". That form of science is persuasive and worth trying.
Jenny McCarthy's meta-referencing of Hollywood films as driving her hospital fight, "I turned into Shirley MacLaine," confirms my theory that LA lives in a meta world. It is self-referencing in an egomaniacal way. I criticize SF for its homogeneity and idyllic bubble -- but LA and its sense of self-worth sometimes drives me insane. It produces an artificial world that the rest of the world strives to emulate, while striving to emulate its own creation simultaneously. It's kind of exhausting.
** the contraction of the original title: "Autism: the Musical" is my neighbor's charming contraction. I wouldn't want to misappropriate her mordant sense of humor.