When a rigged system silences voices

I agree. I know Amazon has the “right” to do this, but their market share is such that it amounts to oppression.

the silent wave

Visiting the lovely peeps on my blogroll today, I came across a particular post that spawned a tangential thought-stream.  What follows is indeed my own thought stream, concerning a topic about which I know little, because I haven’t had the energy to go full-on activist in recent months.  But I’ll share with you those thoughts that did come.

I originally decided that I wasn’t going to name names, but I ultimately decided that I would.

A little background: The post that seeded these thoughts was an ActuallyAutistic review (excellent read!) of the infamous book “To Siri With Love” (by Judith Newman), written by Elizabeth Roderick (whose blog is certainly worth a follow!).

And, in my own Aspergian/autistic systemizing fashion, I got to thinking about Elizabeth’s words and how aspects of The System are…well, systematically dampening my own Aspergian/autistic spirits by repeating the anti-AS drivel that seems to spout from so…

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Review of TO SIRI WITH LOVE by Judith Newman

I’m an autistic author, and I urge you to read the critical reviews written by autistic people before you buy this book. Even if you do decide to buy it, it’s important that you know that autistic people have agency, feelings, intelligence and inner life…because Ms. Newman portrays us as thoughtless, helpless beings with no empathy.

I borrowed a copy of this book from a friend, so I could read it and opine on the controversy without financially supporting an author I’d heard was horrible to autistic people. However, Amazon is now not allowing reviews by people who don’t have a verified purchase through Amazon. I currently live on only a few hundred dollars per month (on most months), but I purchased a copy just so I could leave a review on Amazon. It is so important that autistic people endeavor to make themselves heard on the issues raised in this book.

Autistic voices are almost always overlooked, silenced, and dismissed. It’s a phenomenon embodied in this book, and in Amazon’s policing of its reviews in this case.

I first heard of this book when the author tangled with another autistic person—Amythest Shaber—on Twitter. Ms. Newman mentions Amythest in the book, in a really condescending light, and she further showed her contempt and disregard for autistic people in the way she spoke to Amythest online. I got a sick feeling. Autistic people are so often seen as not being worthy of consideration and respect, and I feared this book would be yet another example of that.

I wasn’t wrong.

To Siri With Love had a deep impact on me. I was able to identify, not with the supposedly heartwarming and hilarious struggles of a mother trying to come to terms with a son who doesn’t live up to her standards, but with the struggles of an autistic child who is ignored, harassed, abused, and condescended to by a mother who cannot see what a wonderful person he is.

Gus is now 16 years old, and his mother still hasn’t—will obviously never—come to terms with the fact he’s autistic. Instead, Ms. Newman seeks to make her son into something he’s not. No matter how hard she tries, however, she can’t force him to be normal. Oh, woe is her.

There are parts of this book that were almost heartwarming. The author, time and time again, seemed as if she were just about to realize the errors of her ways, and accept her son for the amazing individual that he is. Then she would ruin it by saying or doing something that made me want to curl up a cease to exist, because of how often I’ve had similar opinions and actions directed at me, and how badly they hurt.

It really sucks that a book that’s basically making fun of you—and everyone like you—for hundreds of pages can make it to a NYT Bestsellers’ List. And if I feel like that, I’d hate to know how Gus feels. Ms. Newman states she didn’t let Gus read the book, but I’m certain he understands her attitudes toward him more than she realizes.

I was born before autism was a diagnosis. I’m not certain when I first realized that I was different, though most of my childhood memories of interacting with others are marked by bullying, abuse and harassment. People constantly made fun of, tried to correct, or were angry at me for my behavior. Any change in my daily routine or plans would spark a meltdown—an uncontrollable episode of anger and fear—which earned me mockery and rage from my parents. My peers sneered at my suggestions we write a dictionary of a made-up language, or compile a catalogue the local plants. They ridiculed my age-inappropriate toys. They wanted to play boring games like house, or tag, but when I tried to join in, I’d get all the rules wrong, and end up rejected, curled in the grass in a fetal position, sobbing.

It was decades before I figured out what I was doing incorrectly: nothing. I was just being autistic, in an allistic (non-autistic) world.
Those who rejected me never learned that lesson. They still haven’t. Allistic people can’t see that there’s nothing wrong with being autistic, or with autistic behavior. I do understand that autistic people can be embarrassing or difficult to deal with, but 9 times out of 10, this would change if the allistic person would simply change their attitude and adherence to pointless ideals, and stop trying to get us to conform when our brains and bodies simply can’t.

To Siri With Love relates all these same experiences I had as a child, but not from the point of view of the child. Instead, it’s told from the standpoint of a mother who is fed up with her boring, weird, and difficult son.

Ms. Newman repeats over and over that she loves Gus. One gets the impression she’s trying to convince herself, or simply that she thinks stating it will make up for the fact that she doesn’t really love him that much (like those who prelude their racist statements and actions with “I’m not racist but…). Every time she states she loves her son, she follows it up with an anecdote that makes me want to weep, because of how clearly it demonstrates her contempt and dislike for Gus. Ms. Newman throws away her son’s toys—in which he obviously takes great comfort and joy—because she thinks a boy his age shouldn’t play with them anymore. She thinks the fact he enjoys Sesame Street is “alarming and frustrating”.
She steals and reads his phone when he’s texting with his friends because, in her words, “this is not a child who will ever have real friends,” and she’s just trying to protect him from people who are trying to use and hurt him (not seeing the irony, as she is the one who is hurting him, robbing him of real friends, while she makes fun of him behind his back or even to his face). Her idea of friendship, she says, is “people you go everywhere with”, “people who tease you” and “people you have healthy competitiveness with”. That makes sense, given the way she treats the son she supposedly loves: making fun of him and constantly comparing him to other mothers’ neurotypical sons.

She mocks and belittles Gus at every turn, even though she paints a picture of a son who is unerringly kind, genuinely likes people, is curious, and can discern when someone is being unkind…probably even when that person is his own mother. If I had to guess, I’d say it was Ms. Newman who lacks the social skills to tell when she is hurting her son.

Ms. Newman chuckles over her belief that Gus will never have a good career, or any sort of life at all, even though he already worked (as a child!) successfully as a doorman in their building—a job that was ultimately ended by ableism, not any fault of his own. Ms. Newman rolls her eyes repeatedly throughout the book and states outright that her son is “boring”, because he likes to talk about ambulances, escalators, and trains. I can understand that you might find a hour-long monologue about trains boring, Ms. Newman. Autistic people often feel the same way about small talk, or endless discussions of pop culture, sports, and the best recipes for vegetable chips (unless one of those is a special interest). Please accept that you are every bit as boring as we are, sometimes.

And then there’s the outright eugenicist bent of this book.

Ms. Newman hates her son’s autism so much that she’s stated she plans on getting medical power of attorney so that she can have him forcibly sterilized when he turns eighteen. Ms. Newman, here is the answer to the question you posed in the pages: you cannot even consider sterilizing your son without sounding like an eugenicist, without being one. Yes, many eugenicists are supposedly “well-meaning” people…just like you.
I want everyone reading this book to be very clear in their mind that this is what eugenics looks like. Ms. Newman and her supporters try to justify their eugenicist ideas by saying someone like Gus would never be a good father. This is demonstrably not true; please speak to the autistic community, and to ME personally. I’m a mother, and my former partner—a man so much like Gus I cried through parts of this book— was also a loving and amazing companion to my daughter. You and your supporters say, “wouldn’t sterilizing him be better than an unwanted pregnancy?” If so, all children should be sterilized, because allistic people have more unwanted pregnancies than autistics.

Eugenicists always have justifications for their behavior, and Ms. Newman is no different. Let’s call a duck a duck, please. There’s no excuse for eugenics.

In her mind, Ms. Newman is only trying to protect her son from hurt with her repressive, shaming, and controlling behavior. However, autistic people know from experience that parents like these can be the biggest source of hurt in a child’s life, and we know from experience that Ms. Newman is a horrible example of these. And example that, even more frighteningly, is being held up by mainstream society as a heartwarming and “refreshingly honest” paradigm.

As an autistic person, I’ve never understood why it is so important to allistic people that I act like them. If I want to play with my toys in public, or sing a song about my grocery list as I wheel my cart down the aisle, it is clearly not hurting them. In my mind, I’m expressing joy in being alive, or at the simple act of grocery shopping (as well as trying to remember my list, since I always forget something). However, I’ve been tailed by store personnel for this “suspicious” behavior.

I am a human being. I crave attention, love, and acceptance the same way anyone does. I have crushed so many of my loves, hopes, dreams and joys in an attempt to fit in.

After forty years, I can safely say it doesn’t work. I still don’t fit in.

So here is my advice to you, Ms. Newman: love the amazing son you have, not the allistic one you’ve spent 16 years mourning.

I’ll end this review with a couple quotes from the book:

>>Does he even understand that most people are not entranced by escalators? That he doesn’t see the world the way most others do? I’ve tried to approach the question a few times—“Do you know you are autistic?”—and he always acts like he doesn’t hear me. I want to understand what he’s thinking. Is he thinking? I keep trying.

Your son is thinking, Ms. Newman. He’s trying and trying to get through to you, to make you happy, to be good enough in your eyes. It’s tragic that he will obviously never succeed.

Do you know you are allistic, Ms. Newman? That not everyone is entranced by a tome vividly detailing emotional abuse? The autistic community is trying to tell you this, but you seem unwilling, or unable, to learn.

And another:
>>Through pain there is growth. I think about this all the time. Do I want my son to feel self-conscious and embarrassed? I do. Yes. Gus does not yet have self-awareness, and embarrassment is part of self-awareness. It is an acknowledgment that you live in a world where people may think differently than you do. Shame humbles and shame teaches.

Your son has self-awareness, Ms. Newman. I’m wondering if you do.

I don’t want you to feel self-conscious and embarrassed, because I don’t wish pain upon anyone. But I do want you to acknowledge that your son thinks differently than you…and that that’s okay. You don’t need to change that.

I want you to have the self-awareness to acknowledge that you are hurting your son—and all autists—deeply with your attitudes, and this book.
Just because you don’t understand autistics, doesn’t mean we don’t think. Just because we bore you, doesn’t mean we’re not intelligent or interesting. Just because you imagine a Benny Hill soundtrack to our lovemaking, doesn’t mean others won’t want to make love to us.
Just because you don’t see our value doesn’t mean we deserve to be sterilized, or worse.

You don’t need to shame and humble us out of our autism. Just let us be.

To the world, from all autistic people: please, for the love of God, just let us be.

 


Elizabeth Roderick is an autistic author. You can find her on Amazon, and freely leave a review, whether you like her or not.

TO SIRI WITH LOVE: The Oppression of Neurodivergent and Marginalized Points of View

A book has just been published, entitled To Siri, With Love. The author is Judith Newman—a person we in the neurodivergent community call an “autism mommy”: that is, the non-autistic mother of an autistic child.To Siri

Ms. Newman is a great example of how neruodivergent points of view are commonly discounted, ignored, and subverted. Since neurodivergent people, by definition, think and see the world differently than the mainstream, we’re misunderstood. It’s like we’re speaking a different language, or like we come from a culture where all the gestures are different. Like, when I was in Nicaragua, and the “come hither” gesture looked to me like waving hello. Until I learned, every time someone told me to “come here”, I waved back…I wasn’t being nonsensical or thoughtless, I just had a different way of communicating.

This is how neurodivergent people feel, day in and day out. Since we don’t do or say the things people expect us to, they think we’re nonsensical, delusional, or thoughtless. This can lead our imprisonment, abuse, you name it. Because people don’t understand us, they think we’re dangerous, or unintelligent, or that our brains are “dead”. They think our lives aren’t worth living, and they treat us accordingly.

The author of To Siri, With Love is a perfect example of this mindset. Ms. Newman has stated that she doesn’t believe her son is capable of independent thought, or understanding others’ feelings. She publicly mocked his sexuality, telling the world what kind of porn he likes, and indicating she found the idea of him ever attempting sex to be silly and grotesque. This mother has stated outright, with impunity, that she doesn’t believe any girl[sic] will ever be interested in someone like him, and is planning to get a medical power of attorney so she can have him forcibly sterilized when he turns eighteen—because, in her words, “he can never be a real father.”

It probably comes as no surprise that the autism community is really scared, hurt and angry that this book has been published. It’s my understanding that the author has received death threats. I don’t agree with this, but that’s a view of how deeply the community is rattled. (If you want to see the quotes from the books and interviews, and community responses, check out the #BoycottToSiri hashtag on Twitter. Here is the thread of an activist who was included (and made fun of) in the book, without her permission, and here is my friend Kaelan Rhywol, live-tweeting her review of the book.

Full disclosure: I haven’t read this book yet. = I plan to, when I can get it at the library (I don’t want the author to have any of my money, or for her rankings to increase). [UPDATE: I’ve started reading it. Here’s my ongoing thread of tweets. I’ll be doing a full review when I’m done.] I feel the need to read it—even though chances are I’ll hate it—not only because her son sounds wonderful and I want to read about him, but because I want review the book, and I don’t review books I haven’t read. Rarely, I’ll review books I can’t finish, to be clear, but I never base a review on someone else’s opinion. They’ve already left that opinion, and if I can’t offer something new, there’s no point in saying anything.

However, in the case of this particular book, I wanted to review and speak out against its whole concept, and to things the author and her supporters have said and done, before I even deal with the particularities of the book. I think it’s important for me (and every other autistic person who can, and wants to) to make our voices heard on matters like these. Because allowing nothing about us without us is the only way neurodivergent people will ever gain their civil rights in this society. We need to show the world that we are thinking, feeling, intelligent individuals…because people literally think we aren’t, and that we shouldn’t have control over our own lives or narratives. Judith Newman is one of those people, and her viewpoint is popular enough that Harper Collins gave her a platform.

So, it’s time for me to dust of the old blogging fingers and write about one of my areas of expertise: points of view.

For those of you new to this blog, I’m a neurodivergent person. That means, my brain function is different than an average person’s. I am bipolar, autistic, and have PTSD. It’s caused me a lot of trouble and anguish in life, but it’s also pretty cool in other ways.

The first time I learned about point of view was when I had my first psychotic break, when I was about 14. I was wandering down the street screaming that I’d been poisoned and that I needed help. I wandered into a stranger’s house. They called the police.

Technically, I was breaking and entering (I didn’t actually break anything, I don’t believe, but still). Luckily, I wasn’t charged with it, because of the kindness of the police officer. But, from their point of view, I was a dangerous person.

I wasn’t dangerous. I was scared, and very upset.

Whose point of view was correct?

I can’t blame those people for being scared. They had no idea what was going on. However, if they’d been more knowledgeable about neurodivergence, they might not have been scared. They might have been able to offer me kindness and compassion, get me calmed down, and get me the help I needed. It would have been a less horrifying experience for all of us.

I still experience these divergence of points of view almost every day, even when I’m not in a psychotic break. For instance, I’ve been having a lot of problems with people shooting their guns on and near our property—hunting coyotes for the most part. This is a pretty heavily-populated area, all private property and it’s not legal to hunt here. The hunters’ bullets go astray, hit our outbuildings, scare the fuck out of my dog, my kid, and me. I went to my local Facebook group and posted a story of a woman in Wisconsin or somewhere who had been killed by just such an illegal hunter, and asked that people be more responsible with their guns.

Of course, cue a bunch of hunters to get pissed and tell me not to knock hunting.

When they said that, I freaked. The fuck. Out. They were basically saying it was okay to shoot at my house. I tried to reiterate the fact that it was illegal and wrong to hunt on my private property, or on other private property marked “NO HUNTING”, and have their bullets go astray and endanger my family and animals, but mostly I just called people idiots and pieces of shit.

I felt very threatened, is why.

I got banned, of course.

When I calmed down, I was able to see their point of view. They for the most part weren’t being directly threatening, they’d just—for no particular reason—thought I was bashing ALL hunters. And I had—wrongly, except for in the case of one commenter—felt like they were personally threatening me. Since I’m neurodivergent, (I have PTSD, and have had guns pulled on me, have been personally threatened with them), the way I felt and expressed my fear and anger was socially unacceptable. I’m working on it, but it’s difficult to control my reactions sometimes.

But, even if how I expressed myself was “wrong”, my fear and anger were understandable, right? All I wanted was for people not to shoot at my house, and for this, people called me “ignorant”. They said “People probably just don’t like you, libtard. That’s why they’re shooting at your house.”

Understandable or not, since I’m the neurodivergent one, I was immediately seen as the one being threatening. I was in the wrong, by mainstream standards.

The difference is, afterward, I can see where I went wrong. Those neurotypical people, in my experience, never will. I’m forced to live in their idea of mainstream reality, so I’m forced to constantly second-guess my point of view. They’re never forced to.

That’s neurotypical privilege: the privilege of living in mainstream reality, so to speak, and the ability to communicate one’s thoughts and feelings in mainstream ways.

The privilege of being, and feeling, “right”.

I see this type of divergence of point of view play out every day, in all aspects of life. Two completely different viewpoints, and each is completely unable to see the other’s. This happens between neurotypical folks, too, but it’s particularly bad for neurodivergent people, because—by nature—we think differently, and neurotypical people think our brains are wrong and defective.

Can you imagine what it would be like if people thought your brain was wrong and defective? If they immediately dismissed everything you said, always misinterpreted you, and misunderstood you to the point of becoming angry or even violent, when you had no idea what you were doing wrong? Can you imagine if your own mother was like that?

This is how Judith Newman treats her son Gus. It’s the treatment she describes in the book.

I believe it, because this is what it is like for neurodivergent people, every day.

That guy ranting on the street corner (or the girl wandering down the street, screaming about spirits and poison, or the woman freaking out and calling you an idiot on Facebook)—in our own mind, we make sense, just as much as you make sense to yourself. If you got to know us fully, we’d make sense even to you.

We are sentient beings, and have fully-formed minds, just like you.

But hardly anyone wants to get to know “people like that”—people like me, or like Gus—because they think we’re dangerous, or at the very least, pathetic and annoying.

The woman who wrote To Siri, With Love, states throughout the book how annoying and nonsensical her son is—she’s being lauded by neurotypical culture for her “honesty”.

The autistic community, however, isn’t. We’re crying out to her that her son isn’t thoughtless or unlovable; that we’re like him; that often our mothers also thought we were incapable of love or thought, but here we are: thinking, functioning, feeling human beings, some of us with careers and families, all of us with loves and interests and inner lives.

But the author and her supporters are incapable of seeing that point of view. The author sees the outcry in the autistic community as bullying. She can only see her own hurt feelings, and can’t see that she has hurt the feelings of thousands of others…including her own son (whom she states in the book did not give his permission to be used in this way, or have his private life mocked and outed. The mother states that she didn’t think he was capable of consent).

Everyone who is reading this: I hope you will recognize that her point of view is wrong, even though it is currently the mainstream one.

It is time to change your way of thinking about neurodivergent people. It is time for our point of view to come into its own.

Elizabeth Roderick is an author and freelance editor. She thinks trains are pretty cool, and wouldn’t mind if one played percussion in her band. You can find her on Amazon, and on TalesFromPurgatory.com