This short video shows why Autism Speaks needs to shut up and listen

I’ve posted before about why I’m not behind the puzzle symbol for autism.  But I want to talk more specifically about why I strongly object to the ideas and methods of the most prominent autism awareness organization, Autism Speaks.

This video from their “About Us” page is revealing.

In the first seconds, we hear the experience of having an autistic grandchild described as “heartbreak” and later as “grieving.”  The boy’s family members make it clear that they were proud of who he was before his symptoms manifested fully.  But they have nothing positive to say about his worth as an autistic individual, and show no concern for what his experience is.

This is emblematic of the lack of self-advocacy in the autism awareness movement.  Coverage focuses on the experience of families, and treats autistic children as if they’ve died or become vegetative.  (It doesn’t focus on adult autists, period.)  If a positive trait is mentioned in an autist, it has to be some savant quality: precocious piano or art skills in someone non-verbal, for example.

In the video, we see clips of children– almost all boys– stimming and averting their gaze, juxtaposed with clips of neurotypical adults clapping and cheering about their own accomplishments.  Toward the end we are granted a few moments of adult (again, almost all male) autists in occupational therapy.  But we don’t see the co-reality of independently living autistic women (hi!) or children who are verbal but melt down in social situations, etc., and we don’t talk to autists, or hear from autists, we talk about them.  And about their behaviors, not their feelings.  It’s like having a women’s rights committee made up only of men.  “Be thankful for your neurotypical advocates, because all you do is stim,” is the takeaway, when it should be, “Here is a platform and a voice for autists and families to open a conversation.”

Brief glimpses of the group’s slogans and catchphrases are also telling.  We get a brief shot of a person’s back with a tee shirt that says, “Autism will not stop me.”  Later, a graphic from a news report shouts, “Autism Epidemic.”  This is the type of militant attitude that Autism Speaks takes toward neurodiversity.  Autism might as well be neurosyphilis.  What do we do with epidemics?  We don’t live with them and understand them and love them, we eradicate them, or try.  I’m not saying Autism Speaks wants to eradicate autists– just our deviant brains and experiences.

But how can they eradicate when all they are trying to do is “raise awareness”?  As they say in the video, awareness and advocacy “go hand in hand.”  What they don’t clarify is that when you talk about something, you advocate for your view.  Because, language.  When your pleas for autism to become a “household name” are coupled with references to an autism “epidemic” and “grieving” for the neurotypical child you’d rather have, a mouth as big as AS’s starts to be heard, and to drown out everything else.

What we need isn’t awareness for its own sake, or awareness so we can “nip it in the bud,” it’s awareness so that we can understand each other.  We need the active inclusion of autistic adults in all forms of advocacy, from advertisements to board meetings.  We need representations of many of the infinitely various manifestations of autism.  We need to spread not just our label, but a respect for neurodiversity and disability rights, to every corner of the globe.  (After all, most people know what ebola is, but again, what do we do with epidemics?)  If you’re not on board with that, then get the hell out of the way so that people can see and hear those you claim to represent.  No amount of money and “awareness” will rectify the damage you are doing to public discourse about the spectrum.

In one of the most offensive moments in this very troubling video, the voiceover informs me that each of us autists costs $2.3 million over a lifetime, for a total of $137 billion (in what time frame and geographical area I have no idea.)  Seriously, who made this video and failed to go “Uhhh… let’s not monetize the value of human lives”?  Gee, Mr. NT Man, I’m sorry that you find no value in my contribution to society and only see a price tag on my head.

I’m not claiming that everything Autism Speaks is associated with is bad.  On my college campus, I once had a conversation with an 18 year old fellow autist and her friends, members of the local AS group, who were letting people throw pies in their faces to raise awareness.  We talked about neurodiversity and they said they had never thought of autism as a disease and didn’t want to “cure” it.  I wish those students’ attitudes, conviction and sensitivity carried over to the national organization.  Until then, I suggest the group change its name to “Autism is Spoken About,” because right now, they do not speak for me.

Five jokes only people with autism will get! You won’t believe number 3!

Because where’s the fun in being disabled if you can’t laugh at yourself?

How many autists does it take to change a lightbulb?  Just one, if she’s got a spinny chair.

Q:  Why did the autist cross the road?
A:  How am I supposed to know?  I can’t read minds!

Q:  What did one autist say to the other?
A:  Nothing.

An autist walked into a bar.  Then he noticed the tables had been rearranged, and walked out again.

A person with autism, a person with ADHD and a person with OCD walks into a bar, and orders herself a drink.

Submit your own in the comments section and I’ll add them to the original post.  They can be bad or not-bad as you choose.

Spousal rape

My impression is that in most people’s minds, “rape” has two specific connotations:  as date rape by someone the victim barely knows, or as a violent attack by a predatory stranger.  Rarely do I see public acknowledgment of another very serious situation: spousal rape.

What limited discussion I have seen about spousal rape– or, more accurately, partner rape– has focused on whether it is in fact “real.”  The majority, or at least a significant proportion, of opinions are that when people are married (or in a long-term relationship) sex is a right, a given, a duty.  Thus the stereotype of one partner needing an excuse, like a headache, for not wanting sex, rather than being free to say that they just don’t want it right now.  To deny your partner sex is to let them down, and it’s presumed that they would be– and for good reason– upset with you as a result.

Let’s be clear:  There is absolutely no situation in which it is remotely acceptable for someone to threaten, bargain or guilt-trip another into intimacy.  Not on a date, and not in a relationship.  To imply that there is such a situation is to deny and yet condone the misery, humiliation and trauma suffered by survivors of partner rape.  If you don’t believe me about the strength of those feelings, listen to my own story.  Trigger warning for sexual abuse, self-harm.

My husband, who was my first partner and with whom I stayed for seven years, was always sexually aggressive and manipulative.  He pressured me into having sex early on in our relationship, when I was in my mid-teens, and to hide it from my parents, who for better or worse were not particularly liberal on the subject. He insisted on having sex in situations that made me very uncomfortable– in the prop room of the theater building where we went to college, for example.  Throughout, I never had any emotional or physical pleasure from any of our intimacy.

After I moved in with him at 17 (when he was 20) things only got worse.  He started to pressure me to let him do things to me that were very painful and humiliating.  At times, I would cry during sex, and he would ignore me and continue with whatever he felt like doing.  I started cutting myself so deep that I should have had stitches, and ended up with terrible scars.

Because he had threatened to kill me twice before, as well as to kill my beloved cat, and had physically attacked me, slapping me, grabbing me, once slamming my head against a wall, once dislocating my jaw, I had no reason to think that if I denied him he wouldn’t hurt me.  As pathetic as it sounds, I was just as afraid of losing him, since, as often happens in abusive relationships, I had centered my whole life around him.  So the threat to me was real, immediate and implied, if not explicit.  In addition, he took advantage of me twice while I was drunk and passed out, or nearly so, and unable to resist.

Later, when we had separated, I had no choice but to move back in with him for several months.  During that time, he raped me at least 5 times.  I made it clear both in the moment and in general that I did not want to be intimate in any way, but he just kept pressuring and touching and insisting.  At one point he threatened and tried to commit suicide if I wouldn’t be in a relationship with him.  So again, there was a clear threat looming over me as he continually pushed me toward sex.  At one point he even offered to pay me $1000 for intercourse.

There should be absolutely no question, no ambivalence, no doubt that what happened to me “counts” as rape.  In essence, partner rape means taking advantage of a relationship that’s meant to be about trust, love and caring to impose an absolute demand on another person, regardless of how much it harms them.

The experience shattered me.  I felt disgusting, sickened, frightened and violated.  I couldn’t get myself clean enough.  It was around this time that I began again to have horrifying nightmares that had stopped for some time beforehand, while we were separated.  I would wake up screaming and punching the air or the wall.  My skin crawled all the time and I threw up compulsively.  I panicked when I knew he was coming home from work, because of what he might do to me.  I wished he would die, and I considered– and almost succeeded in– killing myself, putting myself in a coma for days after overdosing on several medications.

There is nothing in the world that justifies damaging and tormenting another living being in that way.  Period.  The idea that there is ever a right to sex, that sex can ever be an obligation, is no different from chimpanzees who beat their mates with sticks to force their desire.  It is an animal urge that has no place in society.  Partner rape is a crime and a severely traumatizing experience, and defending it is almost as inexcusable as doing it.

The sickness of TV doctors

Public opinion on daytime TV personality Mehmet Oz keeps souring.  Earlier this year, John Oliver ran a story about his snake-oil-esque marketing of dubious “miracle” supplements.  Now, Twitter users have joined the crusade with their famous ability to co-opt public relations gimmicks, with gems like these:

“Just read that my new detox regimen might be toxic. Can u recommend a detoxification to detoxify my toxins?”

“Would one drop of homeopathic medicine in the ocean be diluted enough for everyone who goes swimming to get the proper dosage?”

“I got a flu shot and was bitten by mosquitoes. Will they carry autism now? “

And some that were, chillingly, difficult to categorize as either impressively ironic or depressingly not:

“Do you know a detox regimen for children left neurologically devastated after a vaccine preventable illness?”

“Hi Dr. Oz! Can a broken heart really cause a heart disease? I’ve read about a broken heart syndrome.”

People seem to have an insatiable desire to treat doctors as high-paid Yahoo! Answers users.  Rather than do the work of researching an answer from reliable sources,  it’s just much easier and more immediately reassuring to fling one-sentence questions into the ether and wait for someone you’ve never met to send you a couple-hundred-word (if that) answer.  It’s easier to go to Twitter and ask Dr. Oz what pill to take and what pseudoscience is real than to search for a local doctor who meets your needs (not a small task) and work with them to find the best treatment options for you as an individual.  Dr. Oz beams right into your living room and he’s charming and handsome (supposedly?) and he has such simple recommendations to completely change your life!

But Dr. Oz isn’t just easier, he’s cheaper.  For the price of a cable TV and internet subscription, you can have all the Dr. Oz you want in your life 24/7.  By comparison, if, say, you need help losing weight, you could visit a GP for a referral to a good nutritionist and visit them regularly.  To the tune of hundreds of dollars per visit.  So aren’t TV doctors doing us a favor by spreading medical knowledge to people who can’t afford care or insurance?

Short answer:  No, they’re twats.  Long answer:  No, they’re twats, they don’t know who you are, you can’t trust what they say, and their reason for living is to take your money.

Let’s be clear, having a degree that lets you call yourself Dr. Somebody is not a qualification to offer unqualified advice to people you don’t know.  It doesn’t mean your an extraordinarily selfless human being with unparallelled mental prowess.  It just means you got through medical school– which is very impressive, but likely has as much to do with where you come from as what you’re made of, unless what you’re made of is money.

There is a reason a doctor’s office insists you give them at least a modicum of information about who you are, your lifestyle, and your personal and family history.  Trust me, I don’t enjoy it:  Every time I visit a new provider, which is fairly often — psychologist, psychiatrist, GP, specialist– I have to answer the same damn questions first on a form and then verbally.  But I’m also glad they collect this information, and if they didn’t, I wouldn’t go back to that office.

Because yes, I imagine the questions exist partly to cover their asses, but the reason that’s even a thing is that treating people without knowing enough about them is reckless.  And I think we’ve all realized by this point that the people on TV cannot actually see you watching them.  Oz has no freaking clue who you are.  He has no way of knowing what adverse effects or interactions you will have with the pills and plants he pushes, and he won’t be there to monitor the safeness and efficacy of the treatment.  You’re on your own to figure out whether what you’re taking or doing is helping or actually harming you.

Oz may be technically a doctor, but he is not your doctor.  The relationship is as simple as this:  He makes money, supplement manufacturers make money, you lose money, and you get nothing else.

And although it’s Oz in the hot seat currently, he’s not alone.  TV is replete with “experts,” such as the doctors on “The Doctors,” and my personal favorite, Phil McGraw, a retired psychologist who hasn’t held an active license since 2006– which is okay, because according to the California Board of Psychology, he practices “entertainment,” not psychology, on his Jerry-Springer-Lite talk show Dr. Phil.

Said McGraw in 2001, “I’m not the Hush-Puppies, pipe and ‘Let’s talk about your mother’ kind of psychologist.”  Very clever, Phil, to set up a straw man so you can make your histrionics appealing in comparison to private talk therapy.  (For one thing, what’s wrong with Hush-Puppies and pipes?)

In fact, the “kind of psychologist” he was, back when he was a psychologist– and the kind of television host he still is– is an overbearing, single-minded, simplistic and callous one.  In his contempt for Freudian psychoanalysis (as if that were somehow the modern trend in talk therapy) he has created a flashy, fast-paced single-serving psychodrama that panders to anyone who might be home weekdays at 3PM.

He has a catchphrase– “How’s that workin’ for ya?”– and inspiring theme music.  He either believes, or wants us to believe, that having a forty-five minute Big Talk with someone where you really set them straight will be workin’ for ya just fine.  Frankly, if I walked into a therapist’s office that resembled McGraw’s studio, I would run out screaming “Help, it’s dystopia!” Understandably, these views have proven controversial at best, but that hasn’t stopped McGraw from raking in the cash– making it to #22 on the Forbes Celebrity 100 List, with $45 million of income.

McGraw is deluding himself if he genuinely thinks that people are so entertained by his not-psychology that they aren’t even considering applying his advice to their own lives.  You don’t call yourself Dr., call your show Dr., and publicly give stern advice to severely disturbed people unless you are counting on and encouraging people to see you as an authority.

And we’re deluding ourselves if we think that this is incidental, because billing himself as a medical authority is his brand.  (In the spirit John Oliver’s suggestion that Dr. Oz should be re-named Check This Shit Out with Some Guy Named Mehmet, I’ll say that I don’t think a show called Bald White Guy Talks Down to Troubled Folks would go over that well.)  It’s why he was called in to advise those The Doctors doctors on “how to give articulate medical advice while being scrutinized by a studio audience in Los Angeles.”  Because his expertise isn’t in psychology, it’s in selling psychology.

TV doctors are, basically, a life hack.  “How to: Get free medical care without leaving your couch.”  But the meme is a much less innocent one than slicing cherry tomatoes in half between two plates.  It in no way alleviates the problematic lack of accessible and affordable medical care, because it does not provide medical care, just tawdry entertainment masquerading as legitimate advice.  All it does is create a new class of parasitic celebrity.  Please, afternoon TV viewers, go back to watching soap operas or reading Harlequin paperbacks or whatever you used to do.  Our fixation on TV doctors is sick, it hurts us, and it needs to stop.