Last Year In “Some Bullshit”: Something I Will Never Comprehend

{This post was originally written on April 22nd, 2016, for the Broad-cast blog. Now that the Broad-cast is defunct, I thought I’d bring it over here to repost it on the anniversary. Not the anniversary of his death, though; the anniversary of the day so many of us spent remembering him via songs and videos and think pieces and GIFs, my god, the GIFs! So instead of the more staid approach I took with the photo illustrations to this piece on the Broad-cast, here I will be inserting GIFs. They may or may not be appropriate to the topic addressed in any given paragraph. I don’t care. Prince gave good GIF.}

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When Prince Rogers Nelson died yesterday at the age of 57, the world lost a musician of unparalleled talent. He played 27 instruments. His vocal range spanned an effortless four-and-a-half octaves. He released 39 studio albums and apparently had thousands of unreleased songs locked in a vault at his Paisley Park mansion. There are literally no other musicians alive today who can even approach Prince’s musicianship across so many metrics.

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But beyond Prince’s contributions to modern music, Prince also spend much of his career existing outside the strict boundaries of gender enforced by our culture. In his song “Controversy,” he addresses the curiosity of the public about his identity, posing questions that I know I was also asking as a young child when I saw him on my television: “Am I black or white/am I straight or gay?” As Alyssa Rosenberg said in the Washington Post yesterday, the deaths, in rapid succession, of both Prince and David Bowie have robbed us of two artists who “showed there’s no right way to be a man”:

“But if conventional notions of gender were only one of the things that didn’t constrain Bowie and Prince, their transcendence of this particular category is still a particularly significant part of their legacies. In the clothes they wore, the lean bodies they lived in, the way they positioned themselves in their music and art, their relationships to LGBT communities and in so many other ways, Prince and Bowie were living arguments that there is no one way, and no correct way for a man to dress, to move, to decide what he values, to choose who he loves or where he stands in relation to that person.”

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Prince’s former bandmate, Wendy Melvoin, said once that her first impression of Prince was that “He looked at me like a gay woman would look at another woman…We looked at each other for the first time and I thought, ‘Oh, I could so fall in love with that girl easy.’” Melvoin was among the many female musicians that Prince promoted relentlessly throughout his career, whether they were instrumentalists like Melvoin, Lisa Coleman, and Sheila E., to whom he gave prominent roles in his bands; or vocalists like Vanity, Apollonia, Carmen Electra, and even Sinead O’Connor, whose career-making breakthrough record, “Nothing Compares 2 U”, was written by Prince.

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In addition, Prince’s lyrics always promoted female sexual agency. In one of his earliest hit songs, “I Wanna Be Your Lover”, Prince’s desire for the woman in the song is built entirely around wanting to give her pleasure, and says, “I don’t want to pressure you,” as simple and clear a refutation of rape culture as we’re ever likely to get in a Top 40 song. Throughout the first two decades of his career, he gave voice to the idea that women could make their own choices about sex. For third-generation sex-positive feminists, listening to Prince approvingly sing about things like female masturbation was often a revelation. Writing for ESPN yesterday, Allison Glock pointed out that:

“He made slut-shaming irrelevant. By inviting women to be sexual on their own terms, to play with camp, to wear lingerie and throw down insane guitar licks, the women in Prince’s crew presented power in myriad forms, and showed they were in on the joke, beating sexist reductions to the punch and turning them on their ear musically and otherwise.”

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Prince also expressed a deep feeling of comradeship with women in songs like “If I Was Your Girlfriend,” where he laments that he will never be able to feel a certain level of closeness with his lover simply due to the expected male/female dynamics of a romantic relationship. His ability to flow between signifiers of masculinity (impeccably manicured facial hair and an often bare hairy chest) and femininity (heels, ruffled blouses, eyeliner, purple everything) was finally encapsulated by the glyph he created to replace his name during his contract battle with Warner Brothers — half male, half female, all Prince. This gender play made him not just an icon for the gay community, but very specifically the black gay community. In a piece for the Los Angeles Times, Tre’Velle Anderson writes:

“For black men, gender is a straight jacket, and day by day we find ways to live with our hands bound. Prince, however, found a way to break free. He shrugged off the confines of gender giving way to a persona that was masculine and feminine, and the world had to deal. Looking at how he moved through the world, seemingly without a care, I saw a way that I too could somehow balance these seemingly opposite identities.”

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But Prince’s comfort with androgyny during the first half of his career derailed after he became a Jehovah’s Witness in 2002, following the death of his only child and end of his first marriage. Although he was apparently furious about the way he was portrayed in a 2008 New Yorker profile, he did not deny saying the quote that deeply confused a gay community that had seen him as an icon for decades:

“You’ve got the Republicans, and basically they want to live according to [the bible]. But there’s the problem of interpretation, and you’ve got some churches, some people, basically doing things and saying it comes from here, but it doesn’t. And then…you’ve got the Democrats, and they’re, like, ‘You can do whatever you want.’ Gay marriage, whatever. But neither of them is right…God came to earth and saw people sticking it wherever and doing it with whatever, and he just cleared it all out. He was, like, ‘Enough.’”

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Prince had always been a believer. He had always woven religious language and imagery into his songs; indeed, “Let’s Go Crazy” is straightforwardly about enjoying the short time we are given on this earth to the fullest, while anticipating “the afterworld: a world of never-ending happiness; you can always see the sun, day or night.” Ann Powers mused on NPR that:

“Prince fans…first had to work through his dirty-minded outrageousness…only to find themselves confronted with the deeper provocation he posed. That was to move through the sensual into a spiritual, even religious space…which he brought to the level of profound spectacle. A promised land, on earth, made of intertwining grooves and limbs. Prince devotees committed themselves to starting there, in a kind of naked state. Beyond the explicitly political thread that delicately runs throughout his work, this was the way Prince fought for civil rights — he created musical environments in which propriety, the viral carrier of prejudice, fell under the curlicued sword of wise good humor and elegant lust.”

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The transition from a Christianity that reveled in the joyous embrace of “living in the now before the grim reaper comes knocking at your door” to one that made him forswear buttless jumpsuits and cease all live performances of songs like “Head” and “Darling Nikki” was jarring. Even for the fans who didn’t feel a kinship with Prince for his gender fluidity and overt carnality, fans who simply idolized his willingness to be deeply weird on every level without apology, a Prince who no longer wanted to gyrate into twenty-three positions in a one night stand seemed…wrong.

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But the people who raised their voices yesterday in an outpouring of grief were the ones who grew up on the Prince of the 70s, 80s, and 90s, who will always remember how his example pushed the boundaries of American ideas of gender. His recent music had become less relevant to pop culture, although he remained a singular figure who was revered throughout his industry. He also turned much of his energy to philanthropy, as his friend Van Jones revealed yesterday on CNN. Slowly but surely, stories have been trickling out over the last 24 hours of donations made in secret so as to conform to his new strict religious beliefs. Helping inner city kids learn to program computers. Donations to small local organizations like libraries. Fundraisers to help prop up local community organizations in Chicago, Baltimore, Los Angeles. While many of us may have seen an idol slip away from us on issues of gender and sexuality, Prince continued to support progressive ideas through undercover largesse.

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Prince was a figure of unfathomable impact in American pop culture. His loss seems unreal. Maybe tomorrow it will make more sense. For today, we can reflect on the things he did, the words he sang, and how they changed us.

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They say you were something in those formative years/hold on to nothing as fast as you can

How are you supposed to feel when someone dies who was very important to you for a very short time very long ago? It seems like I shouldn’t be allowed to be as sad as I am. Like I’m grabbing the coat tails of someone else’s tragedy. But all I know is that there are a small smattering of people who played a role in my life during pivotal periods who I’ve never been able to reconnect with through social media as an adult, and I can now stop my periodic Google searches for this one guy. I never found him. And there’s a tiny hole in my heart because of it.

The end of my eighth grade year was a time of shifting loyalties. In my overly dramatic brain, I was beset on all sides by friends who had never been friends, by enemies who had always been enemies, by people who did actually like me but sensed which way the wind was blowing and desperately jumped ship when being my ally became a liability. I had always been something of a joke, but as middle school marched towards its close, my value as a target for ridicule seemed to reach a terrifying crescendo.

But then something strange happened. An odd assortment of people began to tentatively stand by my side. People who had written me off as a hopeless nerd got to spend some time with me and realized I was actually funny and interesting. People who had always blended into the woodwork emerged and reached out to me.

I have no recollection of how my running joke with this guy started. We were in art class together; that was it. To be quite honest, there may have been some casual inhalation of rubber cement that made us think the whole thing was funny in the first place. But suddenly every time we passed in the halls, he would hip check me and we would trade our silly lines, act out our tiny play. There was no romantic aspect to it (that was already developing elsewhere with someone else I had barely noticed before). This was just a simple affectionate gesture between two people who were practically strangers until that spring, that spring that had been so bleak for me until that point. Did we recognize our mutual dysfunction? A similar darkness inside, a sensation of being lost and directionless?

1994 was a long time ago, and due to a variety of factors my once formidable memory has begun to crumble, so all I have left of him are snippets, small vivid moving pictures of the two of us from that summer and fall. I remember us at a birthday party, both having escaped from the main celebration, hanging off a bed and watching The State upside down. (It was the episode with the Sleep With the State Concept and Barry Lutz Monkey Torture, for the record.) I remember both of us leaving tryouts for soccer teams that we had very little interest in actually joining, strolling with another friend across a baseball diamond, a parking lot, a grassy quad. I don’t remember what we talked about, just a feeling of contentment.

I remember the new school year starting and alliances shifting yet again, making a new set of friends through the fall play, never really seeing him beyond the occasional nudge in the lunch room. And then I remember him being gone. And I remember myself losing my mind, and being too distracted by my own crumbling sanity to have any consideration for his disappearance. I knew he had disciplinary issues. I knew he had dismal grades. I assumed our school had “asked him to leave” because unless someone was actually caught doing drugs in the gym the administration was reluctant to do anything so déclassé as expelling anybody. I heard he had transferred to another local prep school. I decided he was fine. We were never the kind of friends who would chat on the phone, so we disappeared from each other’s lives.

One day he appeared at school, alongside another former middle school classmate (who had, presciently, left after 8th grade rather than bother with another four years of snobby nonsense). He shambled up to me with a huge smile on his face, I yelped with surprised delight and gave him an enormous hug. We fell immediately into our little script from years ago, a script that we had tossed out in favor of actual tentative friendship before he had vanished but still, always, the core of our bond. It was a stupid little bond. I was nothing more than a blip in his life, I’m sure of it. I called him Vinny. He called me Gina. And then he was gone. I never saw him again.

I saw his brother once, when I was living in New York City. I asked how he was doing. The answer was generally noncommittal but clearly not good. I could commiserate. That same night I caught a cab home from Grand Central, rode with the window down, watching the city fly by, letting the air hit my face, feeling that old emptiness, that old darkness. I woke up the next day and found I had plunged into my worst depression in years. It took me another two years to pull myself out. From the sound of it, whatever my old friend was going through, he was in too deep.

I searched for him every time a new social network popped up. Friendster. MySpace. I was actually briefly Facebook friends with some other rando from Buffalo who happened to have the same name until I read his profile and discovered this kid was about seven years younger than us and a drummer in a Christian rock band. Definitely not the same guy. I was apparently not the only one who had left town but occasionally poked around the internet trying to track him down; he had left absolutely no digital footprints. But he had never gone anywhere. As I now understand it, he was in Buffalo the whole time. And tomorrow, I am going to his funeral.

When you’re an adolescent, you break your identity down into pieces and then put yourself back together at least once, if not multiple times. Sometimes in that interval when you’ve fallen apart, you have a moment where you are briefly no one in particular, where you can look around with some peace and clarity and relate to other people with no baggage. The end of 8th grade was that moment for me. I was tired of everyone’s bullshit, sick of their expectations, over their preconceived notions of who I was and who I was supposed to be. And in that moment, I made a friend. Just for a moment. Not enough of a moment to merit the feeling I had in the pit of my stomach when I was told he had died, logically, but no one has ever accused the emotional portions of my brain of having much connection to logic. In that moment when I needed him, he was Vinny and I was Gina. Some days that was what made the difference.

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i want to change the world/instead i sleep

Although I have absolutely no interest in writing a novel and have thus ignored NoNoWriMo for a decade, I fully intended to write at least a little bit this year for this blog.

I failed utterly.

I meant to write about my adventures reading the last 15 years of Marvel Comics in an attempt to better understand the Marvel Cinematic Universe.

I didn’t.

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I meant to write about my obsessive collecting, ever since was I was a child, and how I’ve used it as a way to stave off mania and anxiety, and how often that’s backfired on me.

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I didn’t.

I meant to write a post that has been percolating for almost two years now, about music videos, because that’s obviously totally relevant to the year 2015.

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I didn’t.

I slept.

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My struggles with chronic pain have become more consistently overwhelming than they were in the past. I know there’s an autoimmune component; that’s been clear for a long time. But it’s not specific enough to really find anything to do about it.  Meanwhile, whatever the root cause, more and more afternoons, the only times I have free, are spent with a heating blanket wrapped around my neck and my head, in a desperate attempt to relax the spasming muscles that press on my occipital nerves at the base of my skull for at least a little while, before my children return home and engage me once again in the physical endurance test that is inherent to raising two sensory-seeking autistic kids under the age of 7. The specifics aren’t important.  Suffice it to say, when you combine an obstinate four year old mentality with the need for heavy pressure, everyday tasks become a much bigger physical challenge than anything those sadists at Double Dare ever managed to come up with.  And I don’t even win a new pair of British Knights or a Casio keyboard at the end of the day.

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The fatigue is constant. I find myself drifting off when I’m sitting next to my son in the morning, much like a couple years ago I was drifting off behind the wheel.  I had a sleep study done back then.  Nothing out of the ordinary. No reason for me to be so tired; nothing obviously dysfunctional about the amount or quality of my sleep.

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A few months ago I had a really crappy experience with a neurologist who clearly wrote my symptoms off as psychosomatic as soon as he saw the words “bipolar disorder” on my chart.  He did a standard neurological exam on me, even though I could tell him I wasn’t actually experiencing any of the vertigo or weakness or aphasia or tremor at that exact moment (it takes a little while for a referral to go through, after all), so obviously I would pass.  He told me I didn’t have MS or Parkinsons or Huntingtons, which I knew, and thus he was uninterested.  Tears welled up in my eyes when I asked him why, if there was no obvious neurological cause, I was having neurological symptoms.

He suggested yoga. Or maybe swimming.

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I left the office holding in my sobs.

He sent me for a nerve conduction test, I think maybe as a sop so I would feel like something was being done. If you haven’t ever done a nerve conduction test, don’t.  It involves being poked with a ton of needles and then mildly electrocuted again and again.  The neurologist at the testing site bounded in like an oblivious puppy dog: “Good news, you have no signs of nerve damage!”

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Yes, obviously that’s good news.  I didn’t WANT to have nerve damage.

What I wanted, though, was something approaching an answer.  He gave me none.

I’m starting to feel a little desperate.  I’m flailing. Recently I’ve had wildly fluctuating blood pressure readings.  Could I have some sort of dysautonomia as a result of autoimmune illness?  Maybe, but there’s only one doctor in all of Western New York who specializes in dysautonomia, and she doesn’t take insurance and seems like a bit of a quack. When I called the local headache clinic to see if they could help me with what I’m convinced is occipital neuralgia mimicking a lot of migraine symptoms, I get told they aren’t actually taking new patients (despite their ads on the radio) and are instead referring to the neuro center in Buffalo, over an hour away.

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(Side note: When I hear politicians saying that single payer health care would be a disaster because people in countries with universal health care have to wait a really long time for specialists, I just shake my head.  What universe do they live in, that they don’t realize the same thing happens in this country, we just pay absurd overhead and out of pocket costs for the same shitty care?)

The day I took a shower and the water running onto my face burnt like fire, I got out of the tub and stared at myself in the mirror in shock.  The skin on my face was so red and raw and dry it was peeling off in flakes.  I have to wear two layers of moisturizer, repeated throughout the day.  I really like my dermatologist, she’s an old friend, but there is literally no point to going back to her every time I have an obvious cutaneous autoimmune attack.  Because it means nothing more towards the overall picture; it’s just another checkmark in the same column that gets checked over and over.  When I’m flaring, my skin flares brightest.

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Some days I can’t squeeze the gas pump long enough to fill up my tank.  Whatever is going on in New York State that apparently mandated the removal of the little flip-down bars on gas pumps so you didn’t have to stand there squeezing like an idiot, I’m pretty sure it’s a violation of the ADA.

But whatever.  Some days I can’t squeeze my shampoo bottle hard enough for anything to come out, so it could be worse.

At the beginning of the year, I went to my daughter’s classroom for the yearly open house.  The teacher told us that one of the first activities the class was doing involved the concept of “filling people’s buckets” — some sort of convoluted metaphor for thinking of acts of kindness you can do for other people. Up on the wall were a few rows of orange buckets with semi-legible first-grader handwriting on it.  I scanned the wall, not sure if my daughter would have engaged in the exercise, and after a few seconds I recognized a couple of telltale letters that immediately identified the writing as hers.  My first reaction was shock and pride at the fact that her handwriting was actually better than most of the other kids, and she had written a longer sentence than almost anyone.  Fine motor skills are a challenge for her, and writing long chunks of text are a real source of anxiety.  I was so impressed that she had risen to the task.  And then I read what she wrote.

The way she could fill someone’s bucket was to “be nice to mom because she always hurts.”

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I am broken, and my children know it.

So when they’re gone, I sleep, because then maybe when they’re here, I can pretend not to be broken for a little while.

And that’s why this is my only post for NaBloWriMo.

I suppose there’s always next year.

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And you didn’t even notice/When the sky turned blue/And you couldn’t tell the difference/Between me and you

Last night after the sun went down, multiple buildings at the University of Rochester, down the street from my house, were bathed in blue light. Buildings across the country, across the globe, followed suit. Strategically placed bulbs behind Niagara Falls illuminated the cascading water. Everything lit up, blue.

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April is widely acknowledged as Autism Awareness Month. The UN designated April 2nd as World Autism Awareness Day back in 2008, and Autism Speaks began their Light It Up Blue campaign in 2010, urging people to dress in blue and put blue bulbs in their front porch lights, in an effort to spread awareness of how widespread autism is. For most people in the autism community in the US, World Autism Awareness Day and Light It Up Blue are inextricably linked, and both are clearly associated with Autism Speaks.

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A year before the Light It Up Blue Campaign was inaugurated, Autism Speaks hired Alfonso Cuaron to direct a four minute long video called “I Am Autism”. Given that Cuaron was in the midst of an ugly divorce following his son’s diagnosis with autism, procuring his services to make a film about the effects autism can have on a family had somewhat predictable but no less distressing results.

Over ominous music and grainy home videos of children stimming or staring blankly into space, a chilling voice intones, “I am autism. I’m visible in your children, but if I can help it, I am invisible to you until it’s too late. I know where you live. And guess what? I live there too… I know no color barrier, no religion, no morality… I have no interest in right or wrong. I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up you will cry…I am still winning, and you are scared. And you should be.”

And then the music modulates ever so slightly, to a major key, to a triumphant rebuttal. “And to autism I say: I am a father, a mother, a grandparent, a brother, a sister. We will spend every waking hour trying to weaken you…We search with technology and voodoo and prayer and herbs and genetic studies and a growing awareness you never anticipated…We speak the only language that matters: love for our children…You are alone. We are a community of warriors. We have a voice. You think because some of our children cannot speak, we cannot hear them?…When you came for my child, you forgot: you came for me.”

The message of the video could not be clearer: autism is an insidious force that steals your children, and Autism Speaks is an organization that represents the parents fighting back. It’s a game of telephone — parents presume to speak on behalf of their children, and Autism Speaks presumes to speak for the parents. But given how much inevitably gets lost in translation in any given game of telephone…

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…let’s be honest — Autism Speaks is really just speaking for parents. Their public relations campaigns promote the challenges faced by “warrior moms”. Light It Up Blue spreads awareness, yes. It spreads awareness of how much “autism parents” have to struggle. I have two autistic kids, so basically Autism Speaks is speaking for me. Um…thanks? I guess?

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Autism Speaks was founded in 2005 by Bob and Suzanne Wright. Bob Wright was the chairman and CEO of NBC Universal when his grandson, Christian, was diagnosed with autism. With an essentially infinite rolodex of connections and gobs and gobs of cash, Wright must have found it unfathomable that this might be an unfixable situation. And because of those connections and that cash, Autism Speaks swiftly became the 800 pound gorilla of autism charities. (I mean, people in Buffalo bought a lot of Flutie Flakes, but let’s be honest, Doug Flutie was never going to be able to make the sort of dent that the head of one of the world’s largest entertainment monoliths could. He sure did make a great pass that one time, though, as I understand it.)

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Autism Speaks was steering the ship, and the course was clear: wide-release, big name PR would bring in the donations, and the donations would fund research into the cause of and potential treatments for autism.

The Wrights’ daughter, Katie, was convinced of the then-still-vaguely-plausible theory that her son’s autism was caused by vaccinations, so a lot of money went in that direction at first. When no studies could find a connection, Autism Speaks officially repudiated any link to a possible danger from vaccines. In doing so, they caused a rift between Katie and her parents that has yet to heal. Katie now often writes for Age of Autism, the pre-eminent anti-vaccine blog, and is a vocal critic of the research Autism Speaks has chosen to fund.

Katie Wright and her pals in the anti-vaccine movement are far from the only critics of Autism Speaks, however. Because the louder Autism Speaks’ voice became, the more blue puzzle piece bumper stickers dotted the interstates, the more dollars got tacked on to the tail end of Toys R Us purchases…the more glaring a particular aspect of the organization became to those who were paying attention. Namely, there were no actual autistic people involved in any sort of leadership position at Autism Speaks.

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Autism Speaks was eager to trumpet each new autism prevalence statistic that any study bore out, for the sake of their bottom line — one in 100, one in 66, possibly even 1 in 50 children in America would be diagnosed with an autism spectrum disorder. (Side note: As cited in an utterly execrable Washington Post op-ed yesterday by noted anti-vax “warrior mom” Kim Stagliano, MIT scientist and noted moron Stephanie Seneff believes that soon half of all children will be autistic if current trends continue — but she is indeed a noted moron whose limited grasp of statistical analysis and odd predilection for talking about subjects far outside her own field of expertise [which is robotics, not autism, for the record] makes me strongly doubt the wisdom of the university tenure system — and I’m the wife of a college professor!) But what Autism Speaks chronically neglected to disclose when doom-and-glooming about rising rates was that a great deal of that increase was clearly due to a broadening of the diagnostic criteria and a subsequent boom in the number of autistic people with the capacity, in whatever form, to speak for themselves. And when they began to speak, their voice was almost unanimousAutism Speaks does not speak for them.

This was problematic for Autism Speaks. So much of their program is built around PR that a bunch of adult autistics undermining their message could be truly damaging to their business model. When President Obama named Ari Ne’eman, the head of the Autistic Self- Advocacy Network, to an advisory position in his administration, what had previously been a relatively quiet rumble mainly confined to particularly dusty and nerdy corners of the internet became a clear public dissent. And what resulted was truly unseemly. Autism Speaks was happy to use stats that included so-called “high functioning” autistics to fuel their fundraising efforts, but as soon as those people began to talk back, they were told they were too high-functioning to really count.

But that’s because Autism Speaks really has only ever spoken for parents to begin with. The only autism that is REAL autism, remember, is the kind that needs to be fought ceaselessly with “technology and voodoo and prayer and herbs and genetic studies and growing awareness.” I don’t know how voodoo and prayer fit into their accounting scheme, but I assume some of the technology in question might be the electroshock behavior modification practiced at the Judge Rotenberg Center, an organization that Autism Speaks featured at a resource fair during their national policy and action summit in 2013. By herbs they’re almost certainly talking about the types of biomedical treatments Katie Wright swears by — they may have disavowed any anti-vaccine stance, but they still fund plenty of studies of complementary and alternative medicine, much of which is harmless or even legitimately beneficial but when taken to extremes can basically bankrupt desperate parents pumping their children full of B12 injections and high-dose anti-parasite medications and synthetic castrating hormones and even bleach enemas. Because autism is winning, and parents should be scared. What horrifies many adult autistics most is the newer focus on genetic studies. Personally, as a person with multiple autistic kids I find genetic studies to be of interest on a “The More You Know!” level, but to people who view autism as an integral, inseparable aspect of their humanity, this all sounds like fancy code for eugenics. If there was a genetic test for autism, the way there is for Down syndrome, would most expectant parents abort?

That’s where the last part of Autism Speak’ battle cry becomes vitally important — growing awareness. That’s what this month is supposedly about, what Light It Up Blue is meant to accomplish: making the public aware of autism. But if Autism Speaks is the one defining what people need to be aware of, is that the sort of awareness we really want to spread? Are we spreading awareness of how hard “autism parents” have it, how much we have to cope with that other parents don’t, how terrible autism has made our lives? That seems to be the message of awareness they presented in “I Am Autism” and the message Suzanne Wright voiced in her “call to action” in the fall of 2013 where she once again described autistic children as “missing” and their families as “not living. They are existing. Breathing — yes. Eating — yes. Sleeping — maybe…Life lived moment-to-moment. In despair.”

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I don’t live in despair.

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No, really, I don’t.

I can’t speak for the parents of children who need more support than my kids, or who have other issues that seem woven inextricably into their autism lattice like seizures or gastrointestinal issues or violence or allergies. But for me, with two kids on the spectrum — my life is tough. But THEIR lives are tougher. This should be awareness of THEM, not of ME. I want to raise awareness about the ways they struggle — but also the ways they succeed and the ways they excel. I want to raise awareness of the fact that their lives have value, whether they have fluent spoken language or not. They shouldn’t have to speak to be heard, and until Autism Speaks does a better job of listening, they should stop hogging the megaphone.

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The hard thing is, Autism Speaks DOES do some work that truly directly benefits families affected by autism and autistic people themselves. Whenever an anti-Autism Speaks thread starts in any of the autism-related internet forums I frequent, inevitably people chime in with, “But my kid got an iPad because of Autism Speaks” or “our local organization got a grant from Autism Speaks that has allowed us to create such-and-such fantastic service for adults on the spectrum.” Awesome! I myself have found some of the text resources on their website to be useful, including one about medications that was developed by a nurse practitioner at our local university hospital. But SUCH a small percentage of their HUGE income goes to those sorts of efforts, and so much goes towards questionable research and unfortunate rhetoric that I simply cannot stand behind the organization and will not Light It Up Blue until they make some large systematic changes in their mission statement.

One of my very favorite bloggers, Jess Wilson of A Diary of a Mom, used to actively fundraise for Autism Speaks, participate publicly in their walks, function as one of the largest parental voices for them in the Boston area. But then something happened, an encounter with Suzanne Wright that made her head spin, and soon she could no longer stand behind the organization.

Someone walks over to our step to say hello. She bends at the waist, looming over Brooke.

Brooke doesn’t look up. She doesn’t stop stripping her stick.

Dig. Pull. Dig. Pull.

Our visitor reaches out a hand and cups it below Brooke’s chin.

I freeze. Oh God.

She uses the hand to pull Brooke’s head up by the jaw.

A thin line of panic starts somewhere deep. I know that Brooke is going to scream. 5,4,3,2 …

She does scream, but not in the way that I expect.

“I HATE BEING TOUCHED!!” she shouts.

I am flabbergasted.

Words. Self-awareness. Communication. Self-advocacy.

I know the sentence will need to be reformatted. But I am drenched in pride.

I turn to Brooke. “Great job telling us how you feel, Brooke. Really great job.” I hope that my words send a message to both of them. I stand with my girl.

Our visitor is undaunted.

“I just want to see that beautiful face,” she says. “Lift up for me.”

I am stymied by etiquette. By deference to our host. By generational difference. By convention.

Brooke is not.

She lifts her head as instructed. And growls.

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A woman with so little respect for the physical autonomy of an autistic child, let alone so little regard for the sensory sensitivities common to autistic people, simply SHOULD NOT be dictating the way we raise awareness about autism in this country. And she clearly doesn’t need to act as anyone’s voice. If we bothered to listen, we would find that autistic people truly can speak for themselves, even if it’s just lifting their head and growling. As a parent, I want to open doors for my children, and I will fight to get them the supports they need to succeed in whatever will make them happy. But I’m not a warrior. My kids are warriors, and they’re not fighting against autism, they’re fighting against a world that is unforgiving of any deviation form the norm. I don’t want the world to be aware my children exist. I want the world to accept my children as they are.

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Awareness can be the first step, certainly, although not the sort of awareness Autism Speaks spreads. But acceptance and understanding is what we need to shoot for. And sadly, that’s not what the world’s largest autism charity is all about.

There were no lights at my house last night. Autism has not robbed me of my children or my dreams. They were in bed beside me, dreaming dreams of their own.

“‘I feel all sleepy,’ she said.”

I didn’t want to write this post. And there are a couple of reasons for that.

First of all is the obvious, which is that I’m only writing it because there is a large scale outbreak of a preventable childhood disease that was on the brink of total extinction in this country fifteen years ago. I would prefer that was not the case, and if it was not the case, I wouldn’t feel the need to write this post. Second is more personal, which is that I know some people who do not vaccinate. I know people who are passionate about not vaccinating. I actually know at least one person who believes their child developed autism as a result of vaccinations. I like all of these people. I do not want to offend or upset those people. Some of you who knew me when I was younger and more volatile might not believe this, but I really am a pretty “live and let live” kind of person. My blood pressure benefits from taking a very Wooderson-style approach to life. For the most part, I do not give a shit about the choices people make with regards to their personal lives. You do you, man. Just keep L-I-V-I-N. Alright, alright, alright.

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So let’s not look at it that way. I’m not writing this to try and sway anyone who has already made up their minds. That’s probably not going to happen. People who are committed to the idea that vaccination is harmful, is a scam, is a tragedy…those people aren’t going to change their minds. So, fine. Instead, I’m writing this for two other groups of people. I’m writing this for people who haven’t made up their minds. I’m writing this for people who don’t have kids yet, so they haven’t been bombarded from information on both sides. I’m writing this for people who have a natural skepticism towards anything that comes from Big PHRMA (I totally get that!) or who don’t like the idea of the government forcing you to make certain choices about your body (please refer back to my Wendy Davis post for confirmation that I totally get that, too!). I’m writing for people who just aren’t sure, who don’t know what to think.

But I’m mostly writing it for people who, like myself, are passionate about vaccination in this country, for whatever reason. People who want to wade into the muck of the internet to shout loudly at stubborn douchebags, or, hopefully more likely, to calmly rebut information being disseminated by the antivax crowd. Because they have a lot to say, and I would like to give you some things you can say back. You can’t go into a knife fight armed with a spatula, and you can’t argue with antivaxxers without knowing who they are, how they think, and what they’re going to throw at you.

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The backlash to inoculation began basically five minutes after someone thought up the idea of inoculation. Jezebel has actually recently published a great post about the older history of the topic, including a lot of stuff I didn’t know. My knowledge of and interest in the subject doesn’t go back quite that far. But I’m pretty well versed in the last thirty years of the anti-vaccine movement. I think the best way to approach this is to write out a Who’s Who, because that’s the fastest way for you to check sources — if you see any of the following names, be skeptical, because these are not people speaking from a position of neutrality. And any Who’s Who of the antivaccine movement has to start with…no, not who you’re all thinking of. Honestly, she’s almost a footnote. No, not him either. We’ll get to them, don’t worry. Instead, we’ll start off delicately, with the grande dame of last 20th century antivax activism. Her name is Barbara Loe Fisher.

•Barbara Loe Fisher: Fisher founded the National Vaccine Information Center (NVIC) after her son had a seizure “within hours of his fourth DPT shot…when he was two and a half years old.” This was the old whole-cell pertussis shot, which legitimately did have a worse record of adverse reactions than the current acellular pertussis (DTaP) shot which children now receive, although those adverse reactions were still rare. Fisher wrote a book in 1985 called DTP: A Shot In The Dark. According to Fisher, she saw linguistic regression in her son immediately following the seizure, as well as “chronic infections, constant diarrhea, new allergies, failure to thrive,” and he ended up with “multiple learning disabilities and attention deficit disorder”. Another website I found claimed he has ADHD, asthma, dyslexia, and diabetes. As far as I can tell, no doctor has ever decisively linked any of those things to the vaccine, and I don’t believe she ever took a case to the Vaccine Court. Her son is now a videographer and competitive power lifter, so apparently he started thriving at some point.

OK, herein lies the inherent problem with criticizing many of the people in the antivaccine movement — I don’t want to talk shit on people’s firsthand experience with their child. What Barbara Loe Fisher went through with her son was certainly extremely difficult and emotionally trying. She believes wholeheartedly that her son’s learning disabilities and autoimmune issues were caused by a vaccine reaction. It is impossible to disprove that, in any single individual case. I’m actually shocked she never took her case to the vaccine court as far as I can tell, because I would guess “convulsion following DTP” would be considered a table injury and pretty quickly compensated just to get it off the docket. (We’ll talk more about “table injuries” in my next post, and just as a heads up, IANAL.) But instead of focusing her attention solely on her son, she became an activist. And that’s where I become critical, because now you’re having an impact on public health. But as a rule, I find it harder to pile on to parents, because I am a parent, and I understand how terrifying it is when your child is sick and how frustrating it can be to not know the cause.

I do not have a similar problem piling on to this next asshole.

•Andrew Wakefield: Hoo boy, THIS GUY. I will try to limit my discussion of Andrew Wakefield to absolutely necessary information and not just shout obscenities. In 1998, Wakefield was the lead author on a paper in The Lancet, generally considered one of the foremost medical journals in the world, that asserted a link between the MMR (measles, mumps, and rubella) vaccine and what he later dubbed “autistic enterocolitis”.

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Basically, to boil it down, he suggested to the world that autism was likely caused by the MMR vaccine and was really developmental regression caused by inflammatory bowel disease.

People went batshit. Vaccination rates in England, where Wakefield is from and The Lancet is published, dropped precipitously! Congressional hearings were held! (We’ll also get to those in a later post.) Suddenly, even though we were talking about a totally different vaccine, Barbara Loe Fisher’s crusade was vindicated!

And then, a guy named Brian Deer looked a little closer at this study. It was problematic. I use that word because it is a hilarious understatement.

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To begin with, the article was a case study that used only 12 children, all self-selected, hardly a large scale study with a random sampling of autistic kids. So the scientific impact of the paper, based on the evidence presented by the paper itself, by all rights should have been very limited. But wait, it gets more interesting.

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Two years before the paper was published, Wakefield was hired by a lawyer named Richard Barr who wanted to start a class action lawsuit against the pharmaceutical companies that manufactured the MMR vaccine. Not only that, but Barr paid Wakefield out of the UK LEGAL AID FUND, and Wakefield made around $750K, not including expenses, which was laundered through his wife’s personal company! Oh! Oh! AAAAAND! A year before the paper was published, Wakefield secretly filed for a patent for a single measles vaccine! So, here we go, on top of the grant he personally received from the Legal Aid Board to do the research, he also made $750K (also public money, meant to help the poor and disabled) from a lawyer who wanted to sue the pharmaceutical companies, AND he stood to financially profit from his own proposed vaccine if he could cast doubt on the safety of the triple shot. You got that? That’s Wakefield’s financial shadiness.

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BUT THE STUDY ITSELF WAS EVEN BULLSHIT. Most of the children were referred by the lawyer who wanted to sue Merck, their medical histories were repeatedly changed and falsified, Wakefield gave the kids spinal taps and colonoscopies without getting approval from the Royal Free Hospital’s ethics board, and later tests showed that the intestinal biopsy results stated in the study were incorrect.

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Oh, and also he got his study controls by paying the parents of kids at his son’s birthday party five quid each for their blood. Jesus christ, THIS ASSHOLE.

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So, you know, he’s been stripped of his medical license. The paper’s been retracted. The dude is dodgy in every single way shape and form and anyone with an ounce of sense knows that. But he is still actively celebrated by the antivaccine community. He is their martyr. He founded an organization in Texas called Happiness House where desperate parents could take their kids to be tested and treated for so-called autistic enterocolitis, and more shady research could be done. After he lost his license, Happiness House changed its name and Wakefield and his cohort disappeared from their research masthead. Wakefield now mostly hangs around conferences lapping up speaking fees and doing propaganda videos for various antivax media outlets.

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It’s worth also mentioning his buddy Arthur Krigsman, who basically has built an entire career around diagnosing autistic enterocolitis. Storytime: About a year and a half ago, a woman named Dorothy Spourdalakis killed her son, Alex, who had been hospitalized for apparent gastrointestinal illness and who was non-verbal and autistic. Wakefield showed up at his bedside in the hospital to make a short movie (with the help of Polly Tommey from the Autism Media Network, and disseminated with the help of then-CBS reporter Sheryl Attkisson, who can reliably be counted on to take the conspiracy theory stance on basically everything and who also believes that Obama bugged her laptop because Benghazi)

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…about how the hospital was treating this boy horribly and refusing to entertain the notion of using any alternative protocols. Wakefield and Tommey’s video, which I am not going to link to because it is too upsetting, revealed that an independently obtained gastroenterologist had been flown into Chicago and discovered that Alex was almost certainly suffering from measles enterocolitis. Guess who that gastroenterologist was? Hi, Arthur Krigsman! Wakefield has recently put out a documentary called “Who Killed Alex Spourdalakis?” The answer is apparently NOT “his mother and godmother who tried to overdose him and then stabbed him to death when the overdose failed.” No, according to Andrew Wakefield, Alex Spourdalakis was killed by mainstream medicine, Big PHRMA, and everyone who had refused to listen to him, Saint Andrew Wakefield, who has only ever had the needs of the children at heart.

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I hate Andrew Wakefield, and you should too.

•Jenny McCarthy: Jenny falls into the same category as Barbara Loe Fisher for me, to a certain extent, in that I don’t doubt her sincere belief that her child’s medical challenges were due to vaccines. But man alive, did throwing her hat into the antivax ring during that Oprah special ever revitalize her career in a creepy way.

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Jenny has written three books about autism and vaccines since her son Evan was diagnosed with autism. Her first book deals specifically with Evan’s story. According to Jenny, after Evan’s MMR he started showing behavioral and language regression, bloating, eczema, and then eventually seizures. She tried every biomedical treatment under the sun and now, as a preteen, Evan barely shows any signs of autism and doesn’t qualify for special ed services through the school district. Evan also recently called the cops on Jenny for texting while driving. I like Evan. He sounds like my kind of kid.

Jenny’s second book is basically a compilation of stories by other “autism moms” who subscribe to a biomedical approach to treating autism. (One of the moms in the book is Katie Wright, who believes her son Christian developed autism after his MMR shot. Katie Wright’s parents subsequently founded Autism Speaks, which I don’t even have the time to get into here other than to say that Autism Speaks does a lot of great stuff and a lot of messed up stuff and her dad Bob Wright seems to have his head generally in the right place and her mom Suzanne Wright seems to be a horrible narcissist and neither of them believe Katie’s “mommy instinct” about vaccinations is correct and it has been incredibly damaging to their family and I am sorry for Christian and I hope he’s doing OK. Would you like to add one dollar to your Toys R Us purchase today to Light It Up Blue with Autism Speaks?) They tell their stories and then Jenny butts in with parenthetical or italicized asides, because she’s your cool funny friend with big boobs who likes to fart and also talk to you about chelation. This book is not very good.

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Jenny’s third book is nearly unreadable. I’ve tried a few times but I have to jump around because I just keep going “urrrrrrrgh” or “bleeeeeggghhh” or “you have to be kiiiiidding me” and rolling my eyes and banging my head on the back of the chair in the library and generally libraries frown on that sort of behavior. She co-wrote it with a guy named Jerry Kartzinel, who is a DAN! doctor. DAN! stands for Defeat Autism Now! and was a list of doctors endorsed by the Autism Research Institute (which I think would have really befitted from an exclamation point of its own: the Autism Research Institute!) who would treat autistic kids with a variety of biomedical approaches, all of which Jenny and Jerry discuss AT LENGTH in this book. Ranging from relatively uncontroversial and harmless (gluten free/casein free diets, probiotics and vitamin supplements) to nutty and dangerous (chelation, hyperbaric oxygen chambers, chemical castration), DAN! doctors like Jerry Kartzinel made their living by telling desperate parents that their children could be cured if only they tried these very expensive and totally overwhelming treatments to undo the heavy metal poisoning they had been exposed to through vaccination, heavy metal poisoning which of course can only be confirmed by these specific blood tests that they run at this one lab in Kansas, because that’s not suspicious at all and is totally how blood tests work.

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The book is literally just these two people talking about all the interesting things that come out in kids’ poop once they start flushing out toxins. It’s EXHAUSTING, and one of only two books I have ever been tempted to buy simply so I could scribble fact-checky tirades in the margins. (The other book was Liberal Fascism by Jonah Goldberg. Both times I managed to keep my wallet in my pocket, my pen in my purse, and my brain from actually melting out of my ears…but only just barely.)

The Autism Research Institute is now defunct, the official DAN! doctor list has disappeared, Jerry Kartzinel has a Wellness Center where you can buy his own line of supplements and enzymes for only $150 a month, and Jenny McCarthy isn’t showing up much at Generation Rescue or SafeMinds rallies now that she has a place at the table on The View where she wears smart lady glasses and talks about how much she likes to make out with the New Kid she married. (What’s truly horrifying most days on The View is that Jenny McCarthy is almost always the voice of reason. Don’t watch The View, people.) Jenny has walked back pretty much every previous statement she has ever made about vaccines, claiming she’s not ANTI VACCINE per se, she is simply pro SAFE vaccines and pro PARENTS MAKING THEIR OWN CHOICES AND DOING THEIR OWN RESEARCH about vaccines. I think that Jenny McCarthy death calculator website took the wind out of her sails a little bit. But let’s talk a little about parents doing their own research about vaccines. Because that brings us to a guy that I used to give the benefit of the doubt, but who recently has me seeing red.

•Bob Sears: Most expectant parents of the last decade, when they first found out they were pregnant and went to the bookstore to flip through books that would either give them heart attacks about everything they were doing wrong (NO CHEESE OR MEAT OR WINE! COFFEE? ARE YOU EVEN SERIOUSLY ASKING ME THIS? NO YOU CAN’T HAVE COFFEE DON’T YOU LOVE YOUR BABY?) or teach them that everything would go perfectly because Mother Earth Gaia Perineal Massage Evening Primrose Oil, ran across the books in the Sears Library. The Baby Book, The Pregnancy Book, The Birth Book, etc etc etc. Those books were written by Dr. William Sears and his wife Martha, who is a nurse. Bill Sears is known as the primary proponent of “Attachment Parenting” which advocates natural vaginal childbirth and extended breastfeeding if you can swing it, baby wearing, co-sleeping, and basically trying to be as in tune and responsive to your baby’s needs as possible. I read all these books and did a lot of attachment parent-y stuff, and it’s great but it is also EXHAUSTING, as you can pick up from the paragraphs Martha contributes here and there throughout the books that try to sound perky but have a definite undertone of “I have been a stay at home breastfeeding baby wearing cosleeping mom to eight children I am so tired haaaaaalp.”

Appearances to the contrary, Bob Sears is not Bill Sears. Bob Sears is in fact the second oldest child in the Sears brood. He has contributed a few books to the Sears Library, and the one he is best known for is The Vaccine Book. Yes, Bob Sears is a) not his father as much as his books make it kinda look seem like he is, and b) the guy who came up with the much vaunted Alternative Schedule. All hail Dr Bob and his sensible alternative schedule.

I have read The Vaccine Book. I think he does a good job at explaining the different shots, mostly, and having an alternative schedule to suggest to wary parents is certainly better than ending up with parents who don’t vaccinate at all. I would like to take Dr Bob at his word that he believes in the importance of vaccination and isn’t an “antivaxxer” per se and is really just trying to find a middle path through all the sturm und drang on either side. Unfortunately, I have also read another one of his books. It’s called The Autism Book: What Every Parent Needs To Know About Early Detection, Treatment, Recovery, and Prevention.

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I’m going to give you a hint, as a parent who has tried to read basically everything about autism I can get my hands on. If you see the word “recovery” anywhere in the title, you’re dealing with an antivaxxer, or at the very least someone who is deeply entrenched in a biomedical treatment model of autism. Dr. Bob brings up the Wakefieldian measles enterocolitis theory as a possible cause of autism. This book was published in 2010, the same year that The Lancet completely retracted Wakefield’s study. I talked a little bit earlier when DAN! came up about what biomedical treatments consist of. Dr Bob talks about all of them in The Autism Book. Megadose vitamins, chelation, hyperbaric oxygen chambers, enzymes and yeast treatments and GFCF and on and on and on. I don’t remember if secretin (i.e. chemical castration) was discussed, to be fair, but if MMS treatment was around in 2010 when the book came out, I bet he would have made room for that in his book, too. (For those reading this who don’t know, MMS stands for Miracle Mineral Solution, which is basically giving your child ever-increasing doses of bleach both orally and rectally to clear them of all their toxins. Wheeeee!)

princeDr. Bob likes to claim he’s not antivaccine. But anyone who has read The Autism Book knows that Dr. Bob is on Team Biomed, all the way. He’s made that increasingly clear over the last couple years as more and more clusters of vaccine-preventable illness have popped up. Pouting over whooping cough. Tut-tutting about rotavirus. But man, this Disneyland measles thing has just blown his cover wide open. His initial reaction to the outbreak was telling people that they’re overreacting and measles is nothing to fear, and then when people called him out about it he posted a petulant reply on Facebook saying that OF COURSE people should get their measles vaccines but meanwhile, “just to be complete, since I mentioned the ‘S’ disease as well, let me remind you that there is a vaccine to prevent stupid. If you haven’t gotten it already, you should.”

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I’m pretty sure the vaccine against stupid is reading Bob Sears’ Facebook page on the regular. That way you will be exposed to his idiocy in small doses so when he totally loses it, like he did the other day with his satirical piece about how Disneyland should require all parents of kids with ADHD to medicate their children, you will have built up an immunity to that astonishing level of asshattery. Also good to know that Dr Bob not only thinks my kids are vaccine-injured, but that one of them has another disorder that’s super funny and shouldn’t be medicated without ridicule. Isn’t watching kids suffer from ADHD hilarious? Almost as hilarious as kids going blind from measles! Dr. Bob’s Orange Country pediatric practice is most assuredly a non-stop laugh riot, and also a geographically super convenient petri dish for communicable childhood disease. It’s a small world, after all.

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I’m going to stop there for now, because this got way way way longer than I intended it to — and we haven’t even gotten to Age of Autism! Or the Congressional Hearings! Or the Vaccine Court! Or Deuce Bigalow Male Gigolo! Give me some time to regroup and I’ll come back with more. In the meantime, remember to spay or neuter your pets! Wait, that’s not it…

“the beads of time pass slow / tired eyes on the sunrise / waiting for the eastern glow”

(WARNING: Here Be Spoilers. I talk about plot lines from all five ASOIAF books and the four existing seasons of GoT, as well as some spoilers for the next season that have gotten out via interviews and set photos. If you have read all that stuff, you’re in the clear.  I really don’t talk about the novellas or the World book. If you haven’t read all that stuff or watched all that stuff but don’t care and want to read semi-comprehensible nerd ramblings, you are also in the clear.)

This year I finally managed to finish all the books in the A Song of Ice and Fire series. And by “all the books in the A Song of Ice and Fire series,” I mean “including all the prequel novellas, the new World of Ice and Fire pseudo-encyclopedia, tons of Tumblr meta and message boards and maybe just a few terrible Arya/Gendry alternate-universe fanfics,” because if you’re going to go fan, you might as well go hard.

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The reason there was so much internet ephemera available for me to consume is that the fandom is starving. Author George R.R. Martin has them (I mean US, I guess…ugh) in the palm of his hand, and that hand should really be typing faster. The fifth novel in the series came out in 2011 and landed with a similar critical thud to the fourth novel — the two were originally meant to be a single book but GRRM’s editor seems powerless to reign in his worst indulgences so they had to be split or they would have been unreadable. As it is they are so dense that various fans on the net have suggested different orders in which the chapters of the two books can be read to make them less of a slog. Myself, I just decided to to read all the chapters of each character in a row to get through the fifth book faster. Many of the plots don’t even come close to intersecting, and I adjusted for the few that do — reading the Theon and Asha chapters together, for instance, or the various things that happen in Essos save for Arya.

I suppose the question is, why do people keep reading, then, if both the books published in the last decade have been terrible from an editorial perspective and intermittently engaging from a plot perspective? Because we are taking him at his word that he’s going somewhere with all of this, that the world building is essential, that things may have gotten a bit labyrinthine along the way but he’s got an endgame in mind and he HAS A PLAN.

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Hm. You know who else supposedly had a plan? The Cylons. How did that work out for Galactica fans? Yes, those of us with an unyielding and unhealthy love for serialized scifi/fantasy have been burned before. How much time did I waste ruminating on the mysteries of Lost? Too much. How many times during the last season of Buffy did I mentally reassure myself that Joss wasn’t just spinning his wheels with the potentials plotline? Too many. It’s a sickness, it really is.

The TV show Game of Thrones, as a result, is about to turn an interesting corner. It is transitioning from a filmed adaptation to a televised fanfic. I’m not sure this has ever happened before, that someone has started making a movie or a show out of unfinished source material, presumably with authorial assurances that of COURSE he’d have finished the books by the time they’d caught up, or at least one of them, no way would it take him another five years…and the author then went “ehhhhh, you know what, it’s more fun writing all the backstory that the actual story; I think I’ll just do that now,” and left the producers high and dry.

Like any adaptation, Game of Thrones has already made its fair share of changes along the way. First of all, they aged up all the kids so it wouldn’t be so creepy to see, for instance, Daenerys getting married to Khal Drogo (although they undermined that by somehow managing to make their wedding night way rapier that in the book) or Littlefinger lusting after Sansa (whoops, still creepy).

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They made Tyrion a lot more cuddly and handsome than in the book because, y’know, Dinklage.

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They made various plot tweaks that overall served the narrative well and managed to trim GRRM’s sprawl down to a level that at least avoids the necessity of having a character flow chart mailed to every HBO subscriber. (“The coat of arms for House Waxley is three candles on a field of…” WHY DO WE NEED TO KNOW THIS GEORGE.) As an adaptation, it has been generally quite successful.

Things started to go off the rails a little last year in season 4, though. The reaction to making a particular Jaime/Cersei sex scene extra rapey was far more heated than the reaction to the aforementioned Dany/Drogo extra rapey scene, mainly because you’re supposed to put rape at the BEGINNING of a redemption arc, not smack in the middle. Didn’t these guys watch Luke and Laura in the late ‘70s?

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They ran through Bran’s entire plot to the end of the fifth book even though everyone else is still back in the third book — and it appears to have been inadvertent, given that producers Benioff and Weiss basically went “uhhhh, I guess Bran’s not going to be in the fifth season, oh well!” This leads to a further complication in that the character of Bran is supposed to be around 10 and is lugged around in a glorified Ergo carrier on a large man’s back, whereas the actor who plays Bran is now approximately 37 years old and weighs 180 pounds. (Also puberty made his nose grow faster than all this other body parts, which isn’t a problem from a narrative standpoint but is just kinda unfortunate. Maybe they’re giving him a year off in hopes his face will catch up to his nose?)

(OK, this next paragraph is about to get even more inside-baseball. You have been warned.)

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The biggest shock of the season came when the much anticipated final scene of the final episode turned out to be just Arya sailing away into a computer generated Narrow Sea rather than the epilogue scene from the third book where a previously brutally murdered character is revealed to have been resurrected by the one damn god in this whole theologically overpopulated series that seems to have any capacity for miracles at all. (I still hold out some hope for the Old Gods; the Seven are clearly bullshit.) Fans went absolutely apeshit when said previously brutally murdered character didn’t show up. They did backflips on the forums trying to think up how the show could sneak the character in during season 5. But Benioff and Weiss pretty much said, “Nah, we’re just going to cut that. Oh, and by the way, next season we’re going to cut all that Iron Islands shizz. And those new and seemingly important characters Tyrion hangs out with for a while. Forget that, too. We’ll have him meet up with Dany instead, because why not. That Prince of Dorne who goes looking for Dany? Let’s scrap him too. The immolation scene would use up too much of our CGI budget. In fact, let’s scrap two thirds of the Dornish royals. Let’s just send Jaime down to Dorne instead.”

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Lord knows what the crap Brienne will be doing in the Riverlands with Jaime now down in Dorne and Stoneheart eliminated entirely. It would be difficult to make that plotline more meandering and pointless than it is in the book, but maybe Benioff and Weiss are up to the challenge. How they’re gonna string out “Sam and Gilly bone on a boat” and “Davos hangs out with webbed-fingered Northerners we’ve never heard of before” plotlines over 10 episodes, I do not know. “Sansa walks down a mountain with random ladies and dying epileptic kid” is obviously going to get some heavy revisions as well. Really, the only characters who have enough plot to make it through 10 episodes are Jon, Theon, Tyrion (although they’ve apparently excised a big chunk), Cersei, and maaaaaybe Dany (even though everyone hates the Meereen shit), Arya (I fully accept that I’m the only one who hates the Arya-in-Braavos shit), and Asha once she runs into Stannis, because all the Kingsmoot stuff is gone.

So looking at all of that, it’s impossible to think of the final three seasons as anything that super high profile fanfic. By the end of season 5, if Winds of Winter isn’t out, they will be flying almost entirely blind other than the intel GRRM provided them on the “R+L=J” situation that everyone who’s read the books and isn’t in some boredom-induced headcanon idiocy spiral (“Hey, what if Jon Snow is actually Cersei’s first baby with Robert, and Dany is Ashara Dayne’s illegitimate child with Benjen!”) accepted ages ago. Oh, and some people are going to fly on dragons and presumably fry up some White Walkers. And Littlefinger will die horribly. (It is known.) But whatever ends up on screen, it’s going to bear about as much resemblance to the actual denoument of the books as any random fic written by a nineteen year old on a LiveJournal with a URL that includes a portmanteau of some unlikely coupling like SanSan or DanOrah.

Oh well. As long as GendRya live happily ever after, I’ll take whatever else we get.

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And Davos gets to retire with his wife on the Summer Islands. Then I will be well and truly sated.

We shall board our imagined ship and wildly sail/Among sacred islands of the mad till death/Shatters the fabulous stars and makes us real

When my family went to visit Rochester this past spring, we drove past a huge old brick building that had obviously been vacant for quite some time.  “What is THAT?” my husband wondered.  “That’s an old insane asylum,” I told him flatly.  I was quite confident, and I was right.  I know what those things look like.  There was one on the street where I grew up.

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When I was an adolescent struggling with mental illness, I found the abandoned towers of the Buffalo State Asylum for the Insane both haunting and troubling.  I was never in any real danger of being institutionalized myself — for one thing, “institutionalization” the way it was practiced until the latter half of the 20th century simply does not exist anymore.  There was a brief passing threat that I might need to be hospitalized in the short term at a small inpatient facility, one with more modern methods, but also one where, as the ER doc informed me solemnly, “they do electroshock therapy.”  That put the fear in me pretty quickly.  I have a bad habit of wallowing in media that I know will upset me, so at that point I had read One Flew Over the Cuckoo’s Nest, The Bell Jar, Girl Interrupted…even thought I knew intellectually that a stay at the small clinic wouldn’t leave me lobotomized like Randle McMurphy, I also knew I didn’t want to take that chance.

The towers have been long since abandoned, but there is still a psychiatric hospital on the grounds near the old asylum.  The summer after my first year in college, I worked at a gas station across the street, and our clientele was largely composed of inpatients with day passes.  They were a colorful crew, all of whom had earned mildly humerous nicknames from the Stop-N-Go veterans.  They came in all day long, buying cigarettes, coffee, hot dogs, beer.  They had day passes, but nowhere to actually go during the day.  So they wandered up and down the street, hung out in our parking lot, mumbled to themselves, and drank.  There was one gentleman who my co-workers had dubbed “Rod”, because his feathered blond hair lent him a vague resemblance to Rod Stewart…if Rod Stewart was made entirely out of sandblasted leather and wore a torn-up denim tuxedo rather than flashy blazers and leggings. Rod would come in about four or five times throughout the say and buy 40 ounces of King Cobra malt liquor in a paper bag.  One day Rod came in to buy probably his third 40 of the day, and as I rang him up, he leaned forward and whispered conspiratorially, “You know, they’re all crazy over there.”

Mildly taken aback, I just smiled at him politely.  “Yeah?”

He nodded, and then added, “After a while it starts to rub off on you.”  He looked rueful for a moment, then turned and walked out the door as the Backstreet Boys crooned over the sound system.

“But I don’t want to go among mad people,” Alice remarked.
“Oh, you can’t help that,” said the Cat.  “We’re all mad here.  I’m mad.  You’re mad.”
“How do you know I’m mad?” said Alice.
“You must be,” said the Cat, “otherwise you wouldn’t have come here.
-Lewis Carroll

 

When my father was a child, he also lived near the asylum.  He and his cousin would ride their bikes past it after school, and the patients would be at their windows, shouting lurid things at them through the bars.  Hearing that story as a kid left me aghast.  It sounded so Dickensian somehow.  Mental patients hissing vulgarities at children from their cells.  Every time I drove by, I would hear the hissing in my head.  It felt uncomfortably real.

As an adult, my dad had a friend who worked at the asylum.  In a recent email, he described it thus:

“While I was waiting for my…friend to be available so we could go to lunch, I overheard my first schizophrenic conversation between an aid and a patient.  The striking this was that he kept repeating the same tape or gambit over and over.  And the aid had no other option but to put up with it and play her part over and over.

When I read this, I felt a chill.  Because it was immediately apparent to me that the patient in question wasn’t just schizophrenic.  He was autistic.  Because people with autism were often diagnosed with “childhood schizophrenia” (a diagnosis, by the way, that is almost unheard of to this day, to the extent that one girl with the diagnosis, Jani Schofield, has been making the talk show rounds like a carnival side show for half a decade now) and put in asylums.  That’s what we used to do with disabled children.  We locked them away.  Kids with autism, kids with Down Syndrome.  Doctors told their parents these children were hopeless cases. Temple Grandin’s parents were told to insitutionalize her.  Daryl Hannah’s parents were told to institutionalize her.  They were not to be seen.  They were not to be spoken of.

The great wave of deinstitutionalization in this country began with the one-two punch of the publication of Cuckoo’s Nest in 1962 and the Community Mental Health act passed in 1963 by President Kennedy.  Kennedy understood the state of mental health care better than most — his younger sister, Rosemary, was lobotomized and institutionalized for relatively shady reasons.  She had a low IQ and grew volatile and disobedient as a young woman.  By the age of 23, her father unilaterally decided that she needed radical treatment. The doctor who performed the procedure would “ask her to recite the Lord’s Prayer or sing God Bless America.

“We went through the top of her head.  I think she was awake.  She had a mild tranquilizer.  We made an estimate on how far to cut based on how she responded.  When she began to become incoherent. we stopped.”

Men reaching out past the bars. Autistics scripting endlessly to bored orderlies.  After a while, it starts to rub off on you.

“The thing that I have understood is that madness entails no obligations.  There’s no need to kill people in order to prove to them that you are insane.  They know it already.”
-Carl Solomon

 

“Carl Solomon!  I’m with you in Rockland
where you must feel very strange…
I’m with you in Rockland
where the faculties of the skull no longer admit
the worms of the senses
I’m with you in Rockland
where you scream in a straightjacket that you’re
losing the game of the actual ping pong of the abyss 
I’m with you in Rockland
Where you bang on the catatonic piano the soul
is innocent and immortal it should never die
ungodly in an armed madhouse.
I’m with you in Rockland
where fifty more shocks will never return your
soul to its body again from its pilgrimage to a
cross in the void.”
-Allan Ginsburg

 

We don’t really have institutions anymore.  The schizophrenics and manic depressives are in and out of prison instead.  People struggle through the waking world disguised in a cloak provided courtesy of Pfizer and Blue Cross Blue Shield, where we can quietly refill prescriptions and hide in plain sight.  Autistic children are integrated in mainstream classrooms, triggering horrified queries about the rising rates.  1 in 88.  Where did they all come from?  Where were they before?

They were in the institutions.  The ones that are slowly but surely being turned into luxury hotellike the one in Buffalo, on the street where I grew up. I am glad for continuing urban revitalization in my hometown, but I would rather spend a winter at the Overlook with Jack Torrance that spend a single night at the Richardson Olmsted Complex with the voice of a thousand McMurphys hissing in my brain.  Because after a while, it starts to rub off on you.