apparently this is currently an open letters blog. Okay. Um. So. That's a thing.
So. John. Pull up a chair.
This has been a long time coming, and while the proximate cause is your clueless comments on To Siri With Love, that's just a last straw.
John, I know you think you're an expert in neurodiversity, because abled people tell you that you are. It feels good, right? Being accepted by the people who you have been told your whole life you should be like? So I can almost see the temptation to try to play reasonable with them, even when they're unreasonable.
Here's the thing, John: when you suggest that maybe the autistic community should try to listen to parents, to see things their way, you are giving away your newness. That has been done. That ship sailed, over and over and over did it sail. We gave up on that before you even heard the word Aspergers. We tried it. It failed. We tried again. It still failed.
So. John. Let me give you an analogy, because I sort of know how you feel. I know what it's like to be given standing and respect I didn't actually earn, to be assumed to be more skilled or in the know or whatever than I am. So here, let me try to empathize with you.
I do a martial art where a lot of things are based on seniority--where you line up depends on your rank. If you and other people are the same rank, who got there first? If you got there the same time, who got to the previous rank first? Who started first, it ultimately goes back to, if it needs to. Both kid's and adult class work this way, but the ranks are mostly the same--youth has a couple more, but kids melt into adult class seamlessly at whatever their rank is when they hit the magic birthday.
Bear with me here, John.
So. I'm mid ranked, I guess, good enough to be impressive to the untrained eye but no expert. This time along I am working with a bunch of kids who also just came up, getting ready for a test. Technically all these kids are senior to me.
Because I am an adult, and because I am comfortable teaching movement based things, people assume I am working 'with' these students. I am not! And it's really important, John, that I don't forget that. They are young. They give me back just as much as I give them. They know the protocols better than I do, even if I am more comfortable with some of the movements. If we need to puzzle something out, they are right there with "maybe it's like this?". If one student has a ridiculous, wrong idea that seems like it should make a technique works, but it won't, someone (or several someones) are there to say "that sounds like a good idea. It doesn't work. We can try it, but this is what happens".
It's vitally important that I remember, John, that these kids are my equals in the community, but also that within the community, if we are needing to split hairs, they're my seniors. They know things I don't. They've got years of experiences with the art that I just don't have. I have experiences in other things, and they transfer over sometimes. Sometimes they are drastically wrong for the objective we are trying to achieve.
It feels good to be told that it's so nice that I'm working with the kids. I know how great you feel when people treat you like an authority on neurodiversity. But there are a lot of people whose experiences you are ignoring, you are refusing to learn from, because the ego of "I'm an expert! I got thank yous and a shiny fellowship and everything!" gets in the way of allowing oneself to learn.
We get people now and then, John, who cannot deal with the fact that children outrank them. Hell, we get people who can't deal with the fact that I outrank them and I'm a very young looking mid-30s. This doesn't go well. They don't learn things. They embarrass themselves. If they represent our club at workshops and such it can embarrass the whole community, because they're fundamentally not understanding what we are about. And this not understanding, largely born of ego and wanting to be respected more than they want to learn, keeps the entire group back.
John, you aren't doing us any favors when you suggest that we need to entertain notions of throwing kids off bridges or involuntary sterilization or any of that. It's not actually reasonable. You're not representing the neurodiversity movement. You are vastly misunderstanding it for your own short term gratification. You aren't doing our next generation any good. You're hurting us all, John, and from here it looks exactly like it's for short term ego boosting 'respect' to the detriment of all of us.
You want to represent us? Then represent us. But you have to start by looking at who came before you and what has been done after you, not just what will make your life easier.
Regards,
Neurodivergent K
37 comments:
What? I don't want a cure for autism, and neither does the blog poster. You need to read this blog post and then realize that for the apparently 3 years you've been an Autism Mom (TM), K has been Autistic for a good bit longer. That means she has more experience than you with this Autism thing, and you should listen to her.
"Jessica Alba" appears to have misplaced their woo on this post. I see the good Dr Williams has cured hep b, tinitus and autism. Sounds totally legit! /sarc
Thanks for taking the time to write these thoughts to me. I do listen and I appreciate the thought you put into it. You are right that even if we think we are experts we can always learn from others. I feel my own thinking has evolved significantly in the last decade in that manner.
I understand that there are others who have engaged in neurodiversity advocacy longer than me, and have greater knowledge, and I respect that. I also recognize that I and others can learn from people who are younger, and indeed younger people are the wellspring of many new ideas we all embrace and carry forward.
You say in your essay that I advocate listening to parents, and by doing so, I give away my newness as a neurodiversity advocate. With all due respect, I think that characterization is inaccurate. I’m well aware that parents have dominated the conversation for decades (sometimes to our detriment), and if you listen to the positions I express at IACC and other forums, I state that fact, and that it’s now time for parents to move aside and let the actual autistic population have the primary voice for our community. That’s a very different position from what you imply.
What I say is that parents deserve a seat at the table, but it’s our table. “Our” being us actually autistic people.
You say, “. . . there are a lot of people whose experiences you are ignoring, you are refusing to learn from.” I don’t ignore people intentionally but I can’t say it does not happen. I always try to do better.
You write, “John, you aren't doing us any favors when you suggest that we need to entertain notions of throwing kids off bridges or involuntary sterilization or any of that.” At no time have I ever advocated such things, and I hope you know that. The fact that I’ve argued for reasoned discourse - diplomacy in place of war – is not an endorsement of such ideas.
In the case of the Siri book I argued for respect of autistic people, and I tried to express how we were hurt by depictions in that story. At no time have I wavered from that position.
Your response gives me pause for thought as to my own messaging and how I express ideas. I’ll continue trying to learn from that.
Best wishes
John Robison
Hi John!
Thanks so much for responding to K's letter. I'm glad you're open to hearing feedback and to listening to your fellow neurodiversity advocates.
I completely understand why being rational and reasonable is so important to you. That's what we've all been told is the mark of a person who is correct, civilized, in control. The problem with being rational and reasonable in the face of open hatred is that it allows people who are acting in bad faith towards the rational person to control the terms of discussion and to push the limits of what is considered an acceptable position to include unspeakable violence and cruelty.
As Jean-Paul Sartre said in Anti-Semite and Jew,
"Never believe that anti-Semites are completely unaware of the absurdity of their replies. They know that their remarks are frivolous, open to challenge. But they are amusing themselves, for it is their adversary who is obliged to use words responsibly, since he believes in words. The anti-Semites have the right to play. They even like to play with discourse for, by giving ridiculous reasons, they discredit the seriousness of their interlocutors. They delight in acting in bad faith, since they seek not to persuade by sound argument but to intimidate and disconcert. If you press them too closely, they will abruptly fall silent, loftily indicating by some phrase that the time for arguing is past."
Parents who advocate for outrageous cruelty and mock their children are not "amusing" themselves in the same sense as an alt-right troll is amusing himself when he posts filth and harassment on a marginalized person's social media, but they are satisfying their anger at being given a child they consider broken and worthless. They take advantage of the commonplace dehumanization of disabled people to appeal to the basest emotions of other temporarily able people. They toy with us, pretending that they are going to engage with us meaningfully only to change the rules once they have us in their space, and then to attempt to discredit us by appealing to prejudice, while also giving themselves a veneer of respectability ("you see, we talked to autistic adults!").
Perhaps you see what I'm leading up to. The point is that we cannot offer a seat at the table to vicious cruelty, because when vicious cruelty sits at the table, it looks like we're endorsing it. It's tempting to reach out to the large audiences that vicious cruelty draws, because perhaps we can save some of them, show them a better way. But the best way to save parents who are being seduced by cruelty is not to give a platform to their seducers. It's to disrupt, fight back, raise hell, speak over the abusers. We have to send the message that their behavior is unacceptable to anyone.
I deleted the spam comment, because it's insultingly irrelevant and inaccurate and I cannot even with it.
John, I am going to try to respond to you, but I cannot do walls of text. I need a bit more white space (purple space on this blog) than you gave me, so bear with me.
Please don't strawman me. You don't give away your newness just when you say "listen to parents". You give it away when you cape for horrific ideas. Okay? If all it took was hearing them to get them to hear us we'd not be having this conversation. But it's deeply dangerous to hold all ideas as equal, all viewpoints as valid. To those of us who survived really horrendous things, it sounds a lot like "what was done to you is excuseable" (we were at a same conference, which you may not have noticed. This attitude about autism, which you are currently contributing to, was a big theme of my presentation). To those of us who have been doing this for a very long time, it sounds like "when *I* do this thing you've tried and failed at, and seen people try and fail at before, it'll work. Because reasons". It's deeply frustrating.
"Reasoned discourse" requires both sides to have a conscience. Vulcanlike (I do say that as a good thing, I like Spock) approaches have their place, but so do flaming arrows. Judith Newman, who in addition to giving way TMI about her kid and preaching eugenics, also is making up frank lies about Amythest Schaeber after objectifying her, is not in reasoned discourse land. If she started there she ran away from it long ago.
Dude, you gave "the Siri book" a five star review on Amazon.
John,
Some years ago, we spoke. It was the summer before I became an employee at ASAN. Alex had just accepted money from Autism Speaks for his video series. You had just joined the science board. The two of you tried convincing me that it was better to work from the inside.
I told you then that it wasn't. That working from the outside and rather than having a seat at the table, we run the show. I'm a parent, like you. Like you, I didn't find out for many years that I was autistic. But once I understood... once I took the time to listen to those that came before us, it became clear, we are the voices that need too be listened to.
I've put in a lot of effort in remaining civil, but the second someone speaks of denying someone their human rights is the second I openly condemn their message. You should try doing the same. This is the same message I told you many years ago.
While you eventually saw the light with regards to Autism Speaks, you created irreputible damage by lending your notoriety to their cause. You are doing so again. You may have shared your concerns, but you make her choices seem reasonable. They are not. It's so important to condemn them and not create the impressions you just have.
I'm on a very short break in between teaching classes during finals week...not enough time to do this post justice by my short comment. (But I'll be back.)
For now, though, all the flappause. So feeling this.
Morénike
OK, you've told me that my style of responding makes it seem like all views are equally legitimate. That's not what I believe. There's no ethical debate about the wrongness of taking away our rights and our choice. There's no ethical debate about saying things that make us seem less. I need to think about how I can advocate for discussion that leads to positive change without seeming to treat very unhealthy points of view as possibly legitimate.
What I saw in the author of the Siri book was a person who was new to writing about autism, and engaging the autistic community for what looked like the first time. I saw the controversy about the book appear online and I read it and formed the opinions you saw. My feeling was that may parents remain stuck in guilt, shame, disappointment etc around autism and kids. Yet some move past that and become more enlightened. I thought she might be able to learn from the community, if given a chance, and that would be good for everyone.
It seems like many others just felt the work should be strongly condemned and I was out of line. Maybe so; I'm not sure what to think. I thought there was a possibility of reasoned discourse, some of you may agree but it's clear many of you don't. Perhaps I should not have said anything.
Why *not* strongly condemn the work? I'm nearing the "old as fucking dirt" dimension, but I really think that Newman disrespects her own son in several ways with this book that I vaguely recognise from my own childhood. She mocks his struggles with communication, movement, and social connection. I faced issues with these things growing up; I was also mocked by adults, albeit thankfully not in print for national audiences. And I can't even with her assertion that she wants him sterilized. The point is this: she's violating her son's privacy, saying awful things about him, and making plans to usurp his bodily autonomy to boot. What's not to hate about this book? The whole thing is despicable and promotes very harmful messages about autistic people. But...sadly, that's nothing new.
John, what part of "you are supporting and legitimizing a person who is normalizing the sterilization of autistic people and that's unacceptable to a large number of autistic people" are you having difficulty recognizing?
Supporting people who abuse children in their abuse of children is supporting the abuse of children.
Giving her book a 5 star amazon review is supporting her abuse.
The book is based on an essay she wrote for the New York Times four years ago. So, no, she's not new to writing about autism.
John,
I have some questions specifically related to your responses here.
You say that you’re aware that parents have dominated the conversation for too long, yet you still believe that they deserve a seat at our table. You, yourself, have contributed towards them dominating the conversation through your involvement with Autism Speaks, and you are continuing to do so here with your insistence that they must be offered a seat at our table.
You surely must understand the uneven distribution of power. The parent narrative is overwhelmingly the dominant one, yet you still believe that they should be given equal consideration in all matters related to autism. Equal consideration is impossible when they are *already* the dominant voice.
I have not read the book in question because the genre of memoirs relating to raising autistic children isn’t exactly one that requires more books. Those stories have been told ad infinitum. What I have seen is the way in which the author has engaged with criticism regarding her book and that has disgusted me because she’s either deflected or outright said that she doesn’t care what autistic people think. This is the person that you’re so keen to protect? What about all the autistic writers who aren’t in a position to secure publishing deals? What about all the autistic writers who, because of people like this author, do not feel that their stories are valuable to the greater public?
You say that the author is engaging with the autistic community – yet she hasn’t even done surface level research and doesn’t understand why Autism Speaks is problematic. That’s not engagement. The fact that she wrote an entire book about her autistic son without even performing a cursory google search to uncover what adults like her son might think shows a total lack of disregard. Sure, she’s engaging with the autistic community now – because she is being forced to. She wouldn’t have done it otherwise, and your support of her doesn’t seem to acknowledge that up until the autistic community called for a boycott, she barely acknowledged our existence and where she did, she did it in less than respectful terms.
In your second comment, you seem to be implying that yours is the voice of reason. That’s simply dismissive. People have the right to be angry and to react angrily to yet another parenting tale of woe. We’re allowed to be hurt by things that hurt us. Rationality is not more important than emotions when it comes to our lives and our qualities of life – things that are negatively impacted by harmful parenting narratives.
You say that perhaps you should have said nothing. You’re correct. Saying nothing is often a good option – especially when you have a large platform and your words lend an enormous amount of weight to what you say.
Then again, Cas, white men going with this whole "listen to the voice of reason" thing and proposing that they are that "voice of reason" isn't anything new, either. (Yep, I went there.)
If you can't condemn abuse, I guess not saying anything is an option. I mean, if your priorities are everyone likes you, at least silence is a way to not provoke dislike (except from people who don't trust cowardice, but I suspect that I'm not real high on your list of people whose opinions you care about anyway).
She wasn't new, as other commenters have said. And, you know what? Even if she was--here's a thing you'd know if you read this blog, ever, when I posted for something other than to criticize you, or if you'd been at my presentation at Love and Autism--you're asking for coddling that isn't reciprocated.
I got death threats, John, as a TEENAGER. For talking about autism. From parents. As a TEENAGER. Who was *actually new*. No one has done anything remotely threatening to Ms Newman. Saying someone wrote abominable things isn't a threat. Offering snark is not a threat. I still get people telling me they wish my mom had succeeded at killing me. I'm not unique in this.
Weren't you with Autism Speaks when they sicced a bunch of lawyers on another autistic teenager?
But standing for parents (who, at this point, should know better) is I guess easier in the short term.
If I may go back to my martial arts analogy--which is how I am maintaining patience at all, because I am Gryffindor and a kid person to my core, cowardice is the root of all evil (yet another thing that's plastered all over this blog)--there's a dude at my dojo. Maybe at my dojo. He may have quit. I'm not sure. He is skilled in another art, apparently. He is about the same age as my parents, and I just deleted a bunch of specifics because sharing them was more than anyone needed
Well, the specifics aren't actually important there. The point is, when people are trying to help this guy he instead hurts them worse. It's a defensiveness. I think he took his ball and went home rather than continue taking assistance from people he feels are inferior to him.
You can choose to NOT be this guy, John. But right now you look a lot like this guy. And no one likes working with people who center their ego and being better than others.
John,
I am both autistic and a parent and I too see you as cutting the author way too much slack. Being new at writing about autism does not give the right to decide on one's child's future life to the extent of eliminating the possibility of procreation. Yes, some autistic peole decide that for themselves, but that is for themselves. Nothing about us, without us, still has meaning.
I am whelmed and can write no more.
John:
You should know by now that books take years to write, edit, and publish. It could have been stopped for correction or “growth” at any point. The author does not seem to be stepping forward to say “I’ve grown and now think differently.” And this is now not just a blight first engagement... this is a popular book that can’t be left uncontested. I understand the temptation of what you are trying to do. I’ve been there, with my smaller sway. But as has been said better than
I can, that path doesn’t seem to work much. Save it for small personal interactions at most. On any larger stage, any influence on swayabke, reasoning people is far overshadowed by the seeming support for unreasonable views. Hammer the views, John. If it’s not one-on-one, you are not dealing with the person, and can’t mitigate the response to the views based on a person’s potential enlightenment.
I’ve read all your comments and will reflect on them. It’s clear that your judgements based on this book and recent interactions with the author are much harsher than my own. I wrote what I saw as a highly critical but reasoned review in response to the many in the community who asked me to weigh in on the issue.
What comes through here is that you think I’m cutting the author too much slack and I’m aiding and abetting evil by not speaking out against this book and her ideas far more strongly. I think I understand your feelings in that regard.
What would be coming through here, John, and which I encourage you to do a deep reading of both the text and yourself for, is that you hold parents to laughably low standards.
I'm having to hold you as the autistic community equivalent of a certain perseon I know in meatspace to keep having this conversation. We would not be having this conversation if I didn't think you were able to be better than this.
Your review did not read as critical of the eugenics propoganda. It read as lecturing autistic people, who you seem to have almost no peer contact with, for having basic standards for human dignity.
And now you are deflecting. I'm gunna need you to tell me in words, John, why it's ok for Judith Newman to write about wanting to sterilize her kids, why it's ok for her to lie about Amythest (like, big whoppers, after being really incredibly nasty and objectifying and infantilizing), because she "might be new" (though we have proof she isn't). You are then going to need to justify that with why it's ok for Autism Speaks to send lawyers after children and why it was ok for autism parents to send me threats when I was 16.
You ignoring those inconvenient things doesn't make you look good or like the victim here, John. It makes you look like you are looking for social power. We all know the dynamic. Side with who has social capital, damn what's actually right.
Yes, I do think you are aiding and abetting abuse. I thought that was clear. I think you can be better than that. We are offering you targeted questions to clarify your own thoughts on why that is, just as my martial arts community offers people plenty of opportunity to, in a phrase, get over themselves. You're welcome.
"At no time have I ever advocated such things"
Um, what do you call giving a glowing review where you say we need to read and understand people advocating for exactly that.
"The fact that I’ve argued for reasoned discourse - diplomacy in place of war – is not an endorsement of such ideas."
Wrong. The fact that you are treating the fucked up things that she believes as deserving "reasoned discourse" instead of treating her hatred as deserving condemnation is endorsing them by giving them validity. And this is a war, with casualties on our side when people listen to narratives like the one she perpetuates and kill their kids.
"It seems like many others just felt the work should be strongly condemned and I was out of line. Maybe so; I'm not sure what to think."
She literally is talking about sterilizing her son which is eugenics, she misgendered Amethyst, she was transphobic in other places...dude, all of that deserves nothing less than strong condemnation and approaching that as if it's a reasonable thing is incredibly harmful.
You don't need to be doing this for very long to realize that autistic voices are always going to be the ones that matter most and that I'm pretty sure that we've already heard everything they are going to say, we obviously know what's best what is needed for us and encouraging parents to speak just because they're parents allows this stuff to spread and hurt people...I've only been engaging with the autistic community for 3 years and that's clear as a matter of principle.
Do better to stop hurting the people you claim to support, because this was a messed up book that deserves to be fought not recommended.
...yes yes you are
unless by savage as fuck you mean literally saying that people should buy the book and read it then yes truly savage
This whole blog post is confusing. It is like they thought you wrote the book, and not your own critical review of it. As if you are advocating for the awful stuff instead of saying how awful it is, which you did. Baffled!
Are you thinking that John wrote the book? He wrote a critical review of the book, saying how horrible those things were. Why is everyone acting like he wrote the book?
Could you help me understand why you think John agreed with the bad things in the book? His review of it was clearly unabashedly critical of parents treating their kids like that. I am super confused. He didn't write the book and he disagreed with it.
I also saw it as critical, but trying to not be alienating. I just am not understanding how people are taking his diplomacy to mean praise or acceptance. He write a review of it the day before that was much much more clearly critical, maybe because it wasn't right to the author. Have people always been this nasty to people who are just trying trying to keep communication open? They may not like his diplomacy, and misunderstand it, but they go on to just be brutal to him, I hate what people have turned into online, they suck so badly. There are people out there who do truly do deserve outrage but it is easier KI guess to go after well meaning people who don'tn act at the required level of obliterating outrage.
He wrote a five star review on amazon.
Five. Star.
That's not critical. That's praising.
Only one person is confused by what I thought, so I'm going to guess it was pretty clear.
I know Judith Newman is unreachable. I knew that by her second twitter exchange with Amythest. Her interactions since then have proven my thesis.
John wants us to think he is well meaning. I am trying to accept that. I am writing to him as a clueless person who truly isn't aware that "walk in their shoes" is tired and old, despite having a million views on a post called "Here, try on some of my shoes" easily accessible right on this blog.
John is doing a lot of dodging of tough questions here though.
And a five star review is NOT savage as fuck. It does not approach savage. A five star review is endorsement. The only criticism he offered in his reviews was aimed at autistic people for having standards.
Most people read it this way. That indicates his communication is not effective.
Encouraging people to read it, and providing it with a five-star review, is supporting it, in the sense that when you do it on Amazon you are providing material aid to the woman who wants to sterilize her son without his consent. You are on a site where people can buy her book, telling them to read her book. That's advertisement. That's helping her to profit off writing vile, abusive things about her child and normalizing straightup eugenics. The softpedaling you play like it's clever (it's not clever, it's mealy-mouthed and cowardly) is icing.
This isn't hard.
"In this well-written book Judith Newman has expressed some views that are rather at at odds with the set of values and ideals that is taking shape among autistic self advocates today. The result is a very polarized response to the book.
I understand how autistic people find some of Newman's ideas disturbing - I am autistic myself. But I also understand where her thinking comes from, and if we autistic people wish to change these dialogues, we need to read and understand first. I think books like Siri With Love are worth reading and discussing for that reason, however troubling you may find some of its ideas. If you are a reader who fully supports Ms. Newman's position I would encourage you to read some of the newer writing from actual autistic people as both sides of the discussion deserve to be heard."
So savage! So critical!
there are, after all, very fine people on both sides
Also for the person who wants to say I think John wrote the book:
I know damn well what John did & didn't write. I have far more familiarity with what he writes and says than he has with what I write and say.
This unfortunately means he is saying things that are unintentionally ridiculous in the context of the location. Oops.
Glad you're here to cape for him though, as I will not be cowed by a plea for "reasoned discourse" when the topics are "eugenics" and "lying about an autistic activist" (nor will I let him forget that he is willing to say more to discourage criticising these than he will to discourage death threats and legal threats against literal autistic teenagers. Whoops).
"Only one person is confused by what I thought, so I'm going to guess it was pretty clear."
Yeah, this is why it's customary to link to things you criticize. He at least two different reviews, one on Amazon, and one on his blog:
http://jerobison.blogspot.com/2017/12/thoughts-on-to-siri-with-love.html
I thought you, and the rest of the commentators here, were responding to the later review.
Mr. Robison,
While I respect your work with the government. You are VERY wrong to give 5 stars and a glowing review to Siri.
I read that book, and I've never been more horrified in my life.
To see you posting a 5 star review on it hurts. I am not even allowed to post my review on amazon unless I buy the book (I got my copy as a review copy from the publisher and will NOT spend cash that will pay that author a single dime.)
When you post a five star review, in ANY area of book reviewing, (this is my profession) you are saying that you LOVED the book.
Period.
You loved To Siri with Love. I can't appreciate or accept that. As an actually autistic person and the mother of two ASD kids... no.
Absolutely not. Never.
Yes, NT parents, if they'd bother to listen, (and some really do) would need a seat at the table. MORE seats need to be given to autistic people. *THAT* NT parent does not. As we've seen in so many ways in the past week, she's not willing to listen or learn. She's not interested in hearing from autistic people. Even the ones who are politely telling her she's wrong are getting blocked.
By five starring that book... you've lost a great deal of my respect. That book advocates things I would NEVER accept for ANY child, ever.
Especially one who may not be able to speak for themselves. Though from the book, I believe Gus to be perfectly capable of communication.
I don't think I'm the only one.
I highly suggest you revise your review, or you'll continue to lose the respect of the people you say you advocate for.
It's not open war, no, not yet, but it is certainly time to get off the fence and pick a side.
It's time to change the narrative and have us telling our own stories. Period. You, a supposed autistic advocate, five starring that book is supporting the very culture which abuses, bullies, and tortures autistic kids.
Enough.
Kaelan Rhywiol
Exactly why a 5 star review, why not 2? I simply don't understand why you are promoting her book,people don't read all the commentary, they go by the stars. A five star review means you enjoyed it. No one who gives a 5 star review of that book can possibly be supporting neurodiversity
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