Why Do We Refuse To Give Autistic People A Voice?
“Oh, god, are these those people that are aggressively MY CHAFF IS WHAT MAKES ME SPECIAL STOP TRYING TO FIX ME? Because I will burn them to the ground. Just tell me what to do.” A. Rosenthal
So. Here we are, talking about To Siri With Love by Judith Newman. Again. I wrote a blog post on December 17th entitled '#BoycottToSiri'. I was hoping that after that (I was late to the party) we'd be able to forget about it. It was upsetting and tiring for many people who took against the book for reasons mentioned in '#BoycottToSiri'. There are also many in depth blog posts written by other autistic people - just google the hashtag.
Sadly, it turns out that the controversy is not yet over. In the quote up top, by 'those people', Rosenthal (a follower of Newman) means 'autistic people'. As Eve Reiland has transcribed, there has been an online conversation between To Siri author Judith Newman and many of her followers.
If you're not sure what I'm on about, let me distill the situation so far:
- To Siri With Love by Judith Newman is published August 2017. It is a book about her life with her twin sons, one of whom is diagnosed as autistic.
- Many in the autistic community point out problematic and worrying parts of the book (see selected quotes).
- Judith Newman responds by saying that the book was not intended for an autistic audience. So, according to the author herself, To Siri With Love is a book by a neurotypical for neurotypicals with a neurotypical view of autism.
- Members of the autistic community, after finding Newman closed to discussion about problematic parts of her book, leave reviews on sites like Amazon, stating their problems with it.
- Newman asks her followers to 'report abuse' on one star reviews.
My first thought was this: I do not think that people should be allowed to review a book that they haven't read. Seems fair. But then I thought, why are autistic people writing reviews for a book they haven't read?
I believe it comes down to this: we do not have a voice.
I'm sure many of the one star reviews have been left by people who have read the book. But if there are reviews by people who haven't, it is not because they are 'trolls' who are trying to destroy someone's career for the hell of it. It is because they are people who are struggling to be heard.
“This seems like the lamest and most generic thing to say, but a lot of them are really just jealous. That you have this big platform and they don’t." Lena Katz
Yes. We are jealous. We are jealous because Judith Newman is not only listened to, but accepted by society and praised for her honesty, while many of us who are autistic are ignored and spoken down to. You only have to spend a little while on Twitter to see it in action. We are told what terms we should use to talk about autism. We are told that our 'disease' should be cured. We are told that we are a burden on our families, friends and society.
Frankly, it is exhausting. For our whole lives we have been told, explicitly and implicitly, that we are 'wrong'. Many of us, particularly women, are being diagnosed well into adulthood after decades of mental health problems and being misdiagnosed. Finally, we are discovering who we are and finding a community of people who understand us. Certainly this has been my experience. So we breathe a sigh of relief, hoping that now we have the knowledge of why we are different, we can explain to others what this means and how to accommodate us.
Not so. I have been astonished at the amount of attention paid to parents of autistic children compared to the voices of actually autistic people. I have come to realise that we are not trusted, because we are 'other'.
'How can you be trusted to know what you need when your brain works differently?'
'You're mistaken - this is how the world works and how we do things. You need to conform to neurotypical society.'
'We're trying to help you. We know what's best.'
From what I have observed, this is the case for disabled people everywhere. We are seen as lesser, and so it is assumed that non-disabled people should make our decisions for us.
'But what about low-functioning autistic people? What about non-verbal autistics who cannot communicate their needs?'
Nonsense. We are always communicating. It's just that you don't realise it. If a child is crying and running away, they are upset about something. If they scream every time you feed them a certain food, they probably don't like the food. If they are happily jumping around, something is pleasing them. How is this not communication? Naoki Higashida is a non-verbal autistic person who wrote The Reason I Jump about his experience of autism. The students at Limpsfield Grange School for autistic girls wrote M Is For Autism. These are people who you might call 'low-functioning' or 'severely affected' by autism. They are still communicating. But often people don't realise because they communicate differently, or it's assumed that they don't know what they need and should be forced into a way of life that is familiar to neurotypical society. If they can't be forced into it, they are essentially worthless, unable to contribute to society, a burden not a blessing.
This is far from the truth. What if we listened to disabled people? What if, instead of assuming we knew best, we trusted what they said? Sadly, Judith Newman is not doing any of these things.
“If you don’t want autistic people pissed off at you, maybe you shouldn’t have pissed them off.” Shasha
“You know, Shasha, your timing is really bad. You have no idea what this was about, or why. Enough with you.” Judith Newman
'Enough with you.' That's how Newman responds to autistic people. And it's how society tends to respond as well.
Victoria C Rowan wrote to Amazon:
"Use your Amazon powers for good and do not let the talented, funny, honest Judith Newman be targeted by a certain streak of lebelous abusive activists intent on ruining worthy book’s success and her personal life."
I'm sure that is how it feels to Newman. But what's behind it is certainly not a group of libellous(?), abusive activists. It is a group of autistic people who are tired of being silenced. We are desperately trying to speak for ourselves and nobody is listening. Instead people enjoy reading stories like Newman's, relating to the tragic story of a woman burdened with a son who embarrasses her, but who she bravely continues to love even in the face of all his faults.
Bullshit. To get personal for a moment, my parents have not tried to conform me but have tried to make life easier for me. No parents are perfect and I don't expect Newman to be either. But at 28 years old, my parents don't tell me I'm weird or embarrassing for carrying a cuddly toy around when I'm stressed. In contrast, Newman states in her book that she threw her son's toy away when he wouldn't respond to it in the way she expected. He was seven months old.
It is clear to me that how we respond to autistic people and disabled people makes all the difference. Surely a public outcry of autistic people against a book about autism is something worth paying attention to. Instead of assuming that we are 'trolls' or 'abusive' or trying to 'ruin' Newman's personal life, why not assume for a moment that we are crying out because we have something important to say?
Instead, Newman is worried about the one star reviews on Amazon. Below are some choice quotes from supporters of Newman, talking about the autistic community who are worried about the impact and message of To Siri With Love and were leaving poor reviews:
“Well, interestingly, they’re all autistic, so (in all probability) have a tendency to perseverate on things. Clearly, they’re perseverating on poor Judith!”
"I was just thinking, they may actually be one of the worst communities to tangle with online, because they unfortunately they don’t seem to get distracted.”
“just did a dozen — annoying shits, and crappy writers.”
“Honestly, these (autistic) people are so jargony, they sound like Scientologists. I have had them after me and they love acronyms and nonsense terms like “allistic” and “AWP.”
"It was a pure pleasure to swat every one of these trolling nitwits. Happy to do it and keep doing it.”
“Sorry if this has been explained already, but who are these people? They don’t appear to be bots...?”
"They are autism activists, and were set off by one woman."
"If more of these bastards got held accountable, maybe things would be different. (But probably not...)"
If we're going to make broad generalisations about autistic people, how about this instead? Autistic people are known for being honest. Brutally honest. They are typically logically minded. They do not play mind games or emotionally manipulate people; they do not see the point or know how. They say what they mean and mean what they say.
We do not set out to ruin careers. We do not enjoy using our precious energy on shouting about problematic pieces of literature. We do not want to spend hours leaving shit reviews for a book on Amazon that we may or may not have read.
But that is what it has come to.
We tried to talk to you. You would not listen. We tried to stand up for ourselves. You shot us down. So we have been reduced to sitting at our computers, clicking on a single star and writing about how your words are eroding our autonomy as our only means left of making ourselves heard, even in the smallest of ways. And still you try to silence us.
How about you listen instead?
Especially you, Judith Newman. You are very vocal on Twitter about your dislike of Trump. You say publicly, 'Trump is a dangerous president.' You want to be heard.
Well, we say publicly 'Judith Newman is a dangerous writer.' We want to be heard, too.
Stop silencing. Stop belittling. Start listening.