9.28.2014

Follow Up: Radiolab's Underwhelming "Juicervose" Autism Coverage

Mali, shortly after getting into a verbal
sparring match with Demetri Martin
At a 2011 Radiolab show in Berkeley.
[Image description: girl with beige skin and
brown fuzzy hair pulled back, wearing
wire-framed glasses, smiling,
wearing a multicolored long sweater,
in front of a blue screen with white
words inside a black box reading:
"IN THE DARK
with Thao Nguyen
and Demetri Martin
PIL
OBO
LUS
RADIOLAB"]

One week later, I am still so sad that Radiolab bungled their Juicervose autism episode. I've been wanting and waiting for them to do a truly autism-focused episode for just about ever. I even wrote about what I'd like to see in a Radiolab autism episode, in 2011. But, aside from the stories from Owen Suskind and his family, most of the reporting was the same superficial, negativity-based autism coverage the media almost always provides. Almost always. I expect better from Radiolab, and I said so, at Thinking Person's Guide to Autism:
You need to know that such tiresomely biased storytelling robs autistic people like Issy Stapleton not only of their victim status but of of their humanity. It turns autistic people — already the target of sloppy media prejudice — into villains. It perpetuates the dangerous and dangerously contagious notion that it is “understandable” for parents to murder their autistic children, if those children cause too much caregiver stress. You told your fiercely loyal and trusting audience, directly, that 'unsuccessful' autistic peoples’ lives are of lesser value.
People pushed back. The Radiolab staff pushed back, seemingly in surprise. When Emily Willingham tweeted about the TPGA critique, Jad Abumrad asked her, "Did you actually listen to the piece?" which was ... an equally surprising response. Though after a few more exchanges with Emily and various TPGA folk, Mr. Abumrad did say that he heard us and was listening, sincerely.

Other responses included assertions that the Juicervose episode could have been worse. I'm pulling Emily's response to that comment out, as it's a dead-on critique of the episode's overall flaws:
"It could have been a whole lot worse" is a pretty low bar to set for a show that bills itself as being "about curiosity" and presents itself as a place "Where sound illuminates ideas, and the boundaries blur between science, philosophy, and human experience." The richness of the autistic experience, for better and for worse, is not encompassed in Temple Grandin, is not conveyed by trite repetition of the same harmful memes of "lost, locked away children" whose aggression brings nothing but pain and hopelessness, and is not well served by turning to the usual suspects (eg, Simon Baron Cohen) as sources. That's a surface treatment sourced from the world's most cursory google search, coming from a quarter whose audience typically expects a little more than that. A lot more than that. And who should have given better to that audience. This isn't Donald Trump mouthing off on Twitter. It's NSF-funded Radiolab, hosted by a MacArthur fellow, for God's sake. 
Imagine this were a show about the experience of being a woman, communicating as a woman, making yourself understood as a woman. Imagine that they open by describing women as "passive" and "emotional." They present a couple of women who seem to transcend this 'problem' of being a woman but suggest that for the rest of women, the outlook is not so rosy. They talk with a researcher who's got a pet idea about what makes a woman a woman. They give us Betty Crocker and a 1950s gynecologist when they could have given us your mother, grandmother, sister, aunt, wife -- a rich tapestry of the experience of womanhood that defies stereotypes, not in unique or unusual ways but in ways that surprise the audience with their generality, that open the minds of the audience to new ways of thinking about women and about how women themselves think. But no. We get tired memes about women, a tired narrative about sporadic transcendence of getting past all that woman-ness, and they serve up a faux-gritty reality of what it allegedly *really* means to be a woman for most women and that reality is all negative and harsh and, sniff, someone hand me a tissue 
That's not journalism. That's not being honest with your subject. That's not being "real" or tackling grey areas. That's being shallow and lazy and letting your own blinders about your subject block your view--and thus block critical perspectives that could have enriched your narrative--and your audience. 
Responding to allegations that we only want reporting on "happy" autism stories, which, erm, no, we are pragmatists and supporters of autistic people's inviolable humanity, Autistic writer Chavisory also commented:
There's a difference between "reporting on darker sides of a story," and "reporting" a story in such a way as to reinforce thinking about a subject that devalues the lives of the people being reported on, and makes the story of autism really the story of how the people around us are disappointed in our existence. 
And frankly, that's an old, boring story. 
It is past time that the story of autism was not defined by how worthless we [autistic people] are to other people.  
Keep listening, Radiolab. Curiosity is only how you find your stories. Listening is what makes your stories different, and makes them matter.

And as a side note: you might want to let colleagues like Andrew at NY Public Radio know that it's a bit disingenuous to leave comments such as "Please take this post down as you are hurting the cause of good journalism by demanding only activist-oriented reporting" without mentioning that they are commenting from a NY Public Radio IP address.

9.13.2014

Amplify This: "Don't Murder Your Autistic Kids"

When we hear that a mother has tried to murder her own child, most people howl in agreement that the mother deserves to be prosecuted to the fullest extent of the law. Most would be angry if that mother successfully plea bargained her attempted murder charge down to child abuse. Most people would not "understand" mothers abusing or murdering their kids.

Autistic, Not Less Valuable
[image description: Leo in foreground,
Golden Gate Bridge & camera-wielding
tourists in background]
Most people would feel that way, unless they learn that the child in question is autistic or otherwise disabled. And then, horrifyingly, people excuse the parent's murder attempt, and start blaming the victim: the child.

This is happening again -- right now -- because of Kelli Stapleton's recent plea bargain for poisoning her autistic teen daughter Issy. News articles and blog posts are using images of Kelli hugging the daughter she tried to kill. Stories are insisting on sympathizing with Kelli, talking about how hard Kelli's life must have been, ignoring her ex-husband's Matt's testimony that Kelly bought an electric shocking collar meant for dogs to use on Issy, "'spiced up data' making physical incidents with Issy look worse than they were, and 'stated that children with autism have to be taken care of, such as taking the child to the train tracks or off a cliff and suggesting a parent should kill his or her child.'" And few accounts portray Issy as a victim -- or even as human -- at all.

I'm begging you to help change those conversations. As I wrote at BlogHer, I want us to be more careful and compassionate when we discuss cases like Issy's. I want people to think about how they got into a headspace where they think it's not just acceptable but defensible to empathize with a self-admitted child poisoner:
"If you identify with a murderer rather than a murder victim or if you become upset when people criticize parents who hurt or kill their disabled kids, then maybe it's time to think about how you found yourself in that dangerous mind space and start making changes to help you, your child, and your family."
And I want us to put victims like Issy first. I want parents to understand that while of course they need and deserve help if their children require intense support, they need to get that help from people who believe in and respect their kids, not from people who do see their children's lives as less worthy than non-disabled children's lives.

Above all, and right now, reporters and writers need to stop sympathizing with murderers like Kelli Stapleton. Parents need to stop saying that they understand why Kelli chose to poison her daughter, because unless they've actually attempted to murder their own child, then, no, they don't.  They also need to stop declaring that a "lack of services" explains these murders, because that's not a universal factor in these crimes. And most parents who lack services do not murder their kids (nor do most parents who struggle with mental illness, which is usually the next justification for unjustifiable acts by parents against their disabed children). As parent Matt Carey writes:
We need better supports. But we can not condone the murder of one of our own [...]. If we as parents can do this, out of some ‘mercy’ argument we are a very small step away from state sponsored murder.
And the media, especially mass-market media like People Magazine (on sale now, but I'm not about to link) and Dr. Phil (interview with Kelli set to run in two days), need to stop sensationalizing stories like Kelli's at the expense of -- and without bothering to consider the personhood of -- autistic people like Issy and my son Leo, and FFS need to stop writing headlines like "County Jail Better Than the Prison of Autism."

If you want to take action, please share my BlogHer article on changing the conversation about murders of children with disabilities. That piece is more compassion- and solutions- oriented than my sorrowful raging among friends, here on my online porch. Link here:
http://www.blogher.com/changing-conversations-when-parents-murder-disabled-children
You can also RT my tweet to People Magazine and Dr. Phil:
 Why @peoplemag's & @DrPhil's sympathetic coverage of Kelli Stapleton is so dangerous: http://www.blogher.com/changing-conversations-when-parents-murder-disabled-children … #JusticeForIssy #autism
Direct link to the Tweet here:
https://twitter.com/shannonrosa/status/510795561255964672
And if you find yourself in a community that empathizes with or defends Kelli Stapleton, you need to get the fuck out of there, and do it yesterday. You need to find people who will support you through hell and high water, but you endanger yourself and your child if you are emotionally dependent on people who refuse to distinguish between the pre-crime mindset of "I don't know how I'm going to get through this, help me not be a danger to my child" and the post-crime mindset of "I understand why Kelli tried to kill Issy."

----

Updated to add: Many people in the autistic and parents of autistic kids communities have asked people to focus even further on Issy as the victim and crux of this story, by not mentioning Kelli entirely in their writings and social media shares. I'd already written these two pieces, but you can be damn sure I'll be following suit from now on, using the hashtag #JusticeForIssy. As Matt Carey writes today at Left Brain/Right Brain:
One can just bet that many comments will take the form, “no one should kill her child…..but…..”
There is no “but” in this. No one should commit murder. No parent should kill her child. Full stop. Period. “But” does not apply
Variants of this are “don’t judge her” and “until you walk in her shoes.”
“Judge” means to form an opinion
For those who write that: the mother tried to kill her daughter. I will form an opinion about this–this is wrong. I don’t have to “walk in her shoes” to say that. Why won’t you form an opinion? Why does her daughter’s disability have anything to do with forming this opinion?
Just in case you are wondering: I did purposely write this without mentioning the mother’s name. The mother is not the story. When autistics have been murdered in the past there have been news stories that never mention the name of the victim.
I recommend sharing Matt's post as well: http://leftbrainrightbrain.co.uk/2014/09/13/when-a-child-is-killed-by-a-parent-the-word-but-does-not-apply/

And I have to once again thank the autistic author of the blog Real Social Skills for helping me write the more thoughtful BlogHer essay, in asking people to think about their attitudes rather than just telling them their attitudes are wrong. 

9.04.2014

So What if God Is Change; Change Is Hard.

Anything different is bad. That is Leo's mantra. It's also mine. And we have had a lot of change lately. None of it is truly awful, but some of it sucks, and some of it is just different, and all of it means adjusting. Those of us who are happiest wallowing in our ruts simply prefer not to emerge unless we have to, like contented little piggies in nice squishy mud.

Lots of "have to" just now. Which means I've got a lot of "Oh, bother," after my role model Winnie the Pooh. Much of that "have to" is not really bloggable, but here's what is (what I can recall right now, anyhow).

Mali has started 5th grade. It's her last year as an elementary student. It's our last year ever having an elementary student. WHAAT? This baby? Noooo.

[Image description: selfie of beige-skinned baby wearing
lavender jammies resting her fist against her face,
sitting on lap of beige-skinned woman with
dark hair and a black long-sleeved tee,
also resting her fist against her face.]
 She also looked on in despair as four of her best nerdling friends (nerdling being currently defined as: Minecrafting, My Little Pony-loving, Adventure Time-watching, science-embracing) moved away over the summer. She is learning to live with missing her friends, but as she's a contemplative sort beneath the Pinky Pie enthusiasm and bravado, the heartache is always there. For now. And she always has plenty of friends. For now. I worry about nerd-shunning this year, though as she mostly hangs out with boys, and with girls who are children of engineers, she should be OK until she gets to the local middle school next year and finds herself among an even wider selection of nerds.

Three of my Personal Pillar friends also changed access this summer. Two went to-time office jobs, one to (eep) Southern California. So that is different, especially for the two who were right-here local and with whom I had weekly routines. They're all on social media, of course. And email. And all the circumstances that led to their changes are really great, and I am happy for them. Just a bit lonelier because I tend to glom onto people like a strangler fig. Which, come to think of it. Hmm. Anyhow.

Iz is in 11th grade. I can't even -- 15 and full of pepper and whip-smart is a whole lot of a whole lot, parenting-wise. It's all Fascinating but requires my investment in a new parenting toolkit so that together we don't both blow the roof off the house. I gather this is a not-uncommon scenario for parents and teens who cohabitate, and may explain boarding school culture. It's worth getting through the hiccups because she is such good company when we're not locking antlers. And then there's her new schedule -- which she lobbied for -- that gets her to school by 7:30 every morning. Which is movtating, so far. She's also activisting, due to irritation with her school's dress code and its promotion of "sexism and rape culture." Do sign her petition if you can.

Leo is happy to be back in school, in his new class with the younger teenagers. He had a summer that was both awesome (he did 10 days at camp and met Steve Young!) and hard (he didn't sleep that much, which made him restless during the day). But his health continues to improve, and we have become an all-whole-grain household to support him in those efforts. He had to give up his beloved, very processed veggie booty, but, like Mali, he's managing. The biggest concession (which he doesn't mind but I do) has been switching to Dannon Lite N Fit yogurt so he can get enough calcium and protein, without the sugar bombs of his preferred Wallaby. But the Dannon has artificial sweeteners, which I do not let my family (our stash of Diet Cokes is for guests, not for us). But his nutritionist said the trade-off was worth it. So there we go. He's got some of that teen O RLY going on too, like Iz.

[Image description: close up of
red rose petals on a
dark wood surface,
surrounded by candles in jars.]
Seymour and I celebrated some milestones last month. We've been in Deadwood City for 20 years. We also celebrated our 19th (!) wedding anniversary (smooch that handsome man) while we were in Oaxaca. That trip deserves another post. One highlight was arriving for our anniversary dinner at Casa Oaxaca and finding the table covered with candles and rose petals. I have seen such things in movies but never experienced it myself. It was enchanting. Seymour and I would like to go back to Oaxaca Now please. With kids or without. Even though visiting Oaxaca meant I can't donate blood for another year because the CDC says it's a malarial zone. Right. Like you can trust what they say these days. (Kidding! Referring to delusional anti-vaxxers being even more delusional than usual. Which makes me furious as they're once again endangering lives and hurting not just Leo but their own kids in the name of Fearing Autism.)

You can probably tell by the droning and the run-on sentences that I am tired. IT'S ALL TRUE. [edited to add: because those last three weeks of August were just me and my offspring, a few ER visits, a bit of projectile vomiting, some ear infections, 5,000 doctor visits because we're not supposed to schedule Leo's many many specialty visits during school time, and lots of swimming and hiking.]  But the kids are back in school now, so, let's see what happens.
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