#like ‘you can’t joke about wanting to be euthanized when other people are murdered against their will it’s insensitive’

[polyamorouspunk]

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[voyageviolet]

I actually sat down and read all of To Siri With Love since there’s been so much talk about it. I have a lot of thoughts about it; it has several problems that haven’t been discussed much because its biggest problems are so egregious. Writing all of that down would make one hell of a long post, though, so right now I’m just going to talk about the worst of it: the eugenics.

I don’t have page numbers for citations because I’m using the ebook version, but I’ll include the chapters the quotes are from.

Here’s the full quotation of the first time in the book that Judith Newman advocates eugenics against her son, in Chapter 8:

A vasectomy is so easy. A couple of snips, a couple of days of ice in your pants, and voilà. A life free of worry. Or one less worry. For me.

How do you say “I’m sterilizing my son” without sounding like a eugenicist? I start thinking about all the people, outliers in some way, who had this fundamental choice in life stolen from them—sometimes cruelly, sometimes by well-meaning people like me. The eugenics movement can be traced back to psychiatrist Alfred Hoche and penal law expert Karl Binding, who in 1920 published a book called The Liberation and Destruction of Life Unworthy of Life.  Its popularity fostered the first eugenics conference in the United States in 1921. The term “eugenics” means “the good birth.” Sample papers: “Distribution and Increase of Negroes in the United States,” “Racial Differences in Musical Ability,” and “Some Notes on the Jewish Problem.”

“Liberation” is such a wonderful euphemism, and in this context many people like my son—and undoubtedly some even less impaired—were “liberated” from the burden of life by those enthusiastic proponents of culling the herd, the National Socialists. An estimated four hundred thousand “imbeciles” were euthanized during Hitler’s rule, but not before they were the subjects of all sorts of medical experimentation. For a while there, Austria seemed to have cornered the market on brains in jars.

The idea of outright murdering “nature’s mistakes,” as the disabled were called, was softened somewhat in the United States. As the psychiatrist Leo Kanner was observing and defining autism, he was also lobbying for sterilization, but not death, of disabled populations. This was considered a progressive view at the time. (He believed there were all sorts of repetitive tasks autistic people could perform that would be good for society, and he wasn’t wrong here, that’s for sure. But we didn’t have computer programming at the time, so he proposed a population of ditch diggers and oyster shuckers.) Around the same time Hans Asperger, the Austrian pediatrician who was the first to identify autism as a unique mental condition, was concluding that “not everything that steps out of the line, and is thus ‘abnormal,’ must necessarily be ‘inferior.’”

That was an even more radical line of thought, and one society struggles with to this day. But wherever you stand on this question, when you start considering how the history of disability is inextricably intertwined with the history of euthanizing and enforced sterilization, you come away unsettled. I began to question my certainty that Gus should never have kids. There is a good success rate in vasectomy reversals, and surely there will be even easier, more reversible methods for men soon. And when there are, I’m going to be the first in line to sign him up. Kids at twenty or twenty-five? No. Thirty-five? I can hope.

I know this is a long quote, but I wanted to share it because I think it’s noteworthy that Newman is aware of the history of eugenics. She knows that it’s the ideology that Nazis used to justify the Holocaust; she knows that it’s been used in the United States to discriminate against disabled people. She knows that it’s a racist and antisemitic tool of oppression. And yet, she still wants to forcibly sterilize her son.

She reiterates her stance in Chapter 13, after watching her son go on a date.

Newman repeatedly emphasizes that vasectomies are reversible, as though that’s a justification for medical abuse. That’s not always true, though:

It's best to consider a vasectomy to be completely permanent. Although the procedure is reversible, and advances in microsurgery techniques have made vasectomy reversal far more successful in recent decades, it is not always a guaranteed success.

...

If fewer than three years have passed since the original vasectomy, patency success rates are around 97 percent and pregnancy success rates are 76 percent. But success rates can fall over time. In men who had a vasectomy 15 years or more before their reversal, the likelihood of restoring the vas deferens is 71 percent and chances of subsequent pregnancy hover around 30 percent.

Since Newman states that she wants to have power of attorney to make a decision about a vasectomy when her son turns 18, and since she later says that she “can hope” her son might have children at 35, it’s most likely that the lower rates of success would be the relevant statistics.

More importantly, though, I think we can all agree that abuse is still abuse even if the medical effects truly are reversible.

If the possibility of an unwanted pregnancy is such a major concern, wouldn’t the best solution be sex education, the same as any child needs? Newman has some thoughts on this in Chapter 13:

Nobody really thinks she has to teach her children about sex. I mean, not really, not in the way you might have to teach them, say, how to use a credit card (amazing how fast they catch on to that). Kids learn the basics of reproduction, what goes where, and then their natural curiosity takes over. They ask a zillion questions, of either you or their idiot friends, and eventually they figure it out.

This strikes me as rather irresponsible. Newman assumes that all parents share her position on this, but I find that very unlikely; at the very least, my own parents were much more proactive than Newman seems to be. Sex education is too important a topic to leave up to chance. Especially when you consider that a key part of autism is struggling with communication, it’s irresponsible to assume that an autistic child will be able to know the right questions to ask, and also that he’ll be comfortable enough to talk about it on his own.

Newman mentions trying to discuss sex with her son, again in Chapter 13:

... it was very distressing that he seemed to not understand anything about reproduction and sexually transmitted disease, never mind anything about affection and romance. Could I let him be in high school—even a high school for other special ed kids—with this degree of ignorance? But I just didn’t know how to broach the subject, because when I mentioned it—“Gus, do you know where babies come from?”—he’d say, “They come from mommies,” and then continue talking about the weather or sea turtles or whatever happened to be on his mind at that moment.

At another point in the book (Chapter 8), Newman describes a time when Gus’s brother teasingly asks him where babies come from, and Gus changes the subject. From this, and from the above quote, Newman assumes that her son knows nothing about sex, but she never considers the possibility that he might be embarrassed to talk about it. This may be because of her bizarre belief that her son can’t feel embarrassment.

From Chapter 6:

But what if you have a child who cannot be embarrassed by you—and doesn’t understand when he embarrasses you? What then? Nothing makes you appreciate the ability to be embarrassed more than having a child immune from embarrassment.

Later in the same chapter:

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. One side of the no-shame equation is ruthlessness, and often success. But if you live on the side Gus does, the rainbows and unicorns and “what’s wrong with walking through a crowd naked” side of shamelessness, you never truly understand how others think or feel. I want him to understand the norm, even if ultimately he rejects it.

This is actually a fairly common misunderstanding for neurotypicals to have: that if an autistic person doesn’t show an emotion the same way that a neurotypical person does, they must not experience that emotion. Still, you’d think that a mother writing a book about her autistic child would make the effort to figure out if her assumptions were true, or at least that an editor might have brought this to attention. Since it seems that no one involved in the book’s publishing process seems to have figured this out, let me clarify: Autistic people absolutely feel embarrassment. In fact, I’d say it’s a major factor in the prevalence of depression and anxiety among autistic people because of the social rejection many if not all of us have had to deal with.

Back to the original point, however: In Chapter 13, Newman looks through her son’s internet search history (ignoring the “tiny flicker of alarm in Gus’s eyes” - because, after all, he can’t be embarrassed, right?) and finds the porn that he’d been looking at. Clearly, then, he has more understanding of sexuality than Newman realizes, but as far as anyone knows, he’s had to learn it from porn rather than his parents.

As anyone reading this probably already knows, Newman has faced a lot of criticism about her book. For the most part, she’s responded to it badly. Some of her reaction can be seen in this article from the Observer:

While Newman’s stories are meant to be humorous, one of the hallmarks of people with autism is that they think literally and have difficulty understanding jokes. Newman knew this and wrote it that way on purpose.

“This book really wasn’t written for an autistic audience,” she said. “It was written for parents, neighbors, people who may love and hopefully will work with someone who is on the spectrum.”

Setting aside the childish implication that anyone who disagrees with her book must not understand it, what stands out to me in this quote is how unreasonable it is to write a book about autistic people and which affects autistic people and then to say it’s not “for an autistic audience.”

A common mantra for disability activism is “Nothing about us without us” - that is to say, we have a right to be involved in things that affect us. In the above quote, Newman stands against this maxim. She assumes that she can say whatever she wants about without being criticized - and that she can communicate her ideas to all of the people around autistic people without any consideration for autistic people themselves.

Newman doubles down on this in a tweet from a few days ago:

Beginning to think well meaning people of #actuallyautistic are in fact enemies of free thought and free speech.  Which is not so good, coming from a group who say they’ve been silenced.

This tweet equates us with oppressive censors rather than people who’ve been hurt by her work. She portrays us as unreasonable for opposing eugenics against our community.

We might sigh a small breath of relief from this quote from the Observer article: 

“I am much less worried now and hoping to be a grandmother someday,” she [Newman] said. “That’s a result of my son’s growth and my own.”

That may be good news for her son, but it’s far too little too late for the autistic community at large. Her book is still being printed as it was written. We still have to contend with a critically acclaimed book that advocates for eugenics. There is a great deal of ignorance about autism in our society, and now the ideas in this popular book will be what some of that ignorance is replaced with.