Autistic Book Party, Episode 21: The Speed of Dark

Today’s Book: “The Speed of Dark” by Elizabeth Moon

The Plot: When scientists develop an experimental treatment that might cure autism in adults, a group of autistic adults working at a pharmaceutical company is pressured to undergo the treatment to keep their jobs.

Autistic Character(s): Lou Arrendale – the protagonist – along with his co-workers.

Well.

This is by far my most-requested review, and I’m embarrassed that it took me until now to get to. Whenever I say, “Hi, I’m Ada Hoffmann and I review speculative fiction with autistic characters,” someone always wants to know, “What did you think of The Speed of Dark?” And then I hem and haw, because I’ve Heard A Lot About It – Both Good And Bad – But Haven’t Read It. Now I’ve read it, so I’m actually qualified to have an opinion of my own. That’s a relief.

This book is, in my tiny corner of disability fandom, A Big Deal. Possibly The Biggest Deal. Some people loathe it. Some people adore it.

It’s also a cure decision story.

So. If you want to know why I don’t like cure decision stories, you should read that link. After reading “The Speed of Dark”, well, I still don’t like cure decision stories. (I’ll also note that some autistic people do want to be cured – I was reminded of this last fall at Can*Con. Not all autistic people have the same opinions as each other! The opinions stated here are, as always, my own.)

But there’s a lot more to say about “The Speed of Dark” besides “it’s a cure decision story”. Some of that is good, and some is bad.

Here’s the good first. “The Speed of Dark” is more nuanced than I was expecting. Specifically, it shows an awareness – which I hadn’t seen before in any other cure narrative – of the complicated power dynamics that go into discussions of cures. Here’s a quote from the first scene:

If they aren’t going to listen, why should I talk?
I know better than to say that out loud. Everything in my life that I value has been gained at the cost of not saying what I really think and saying what they want me to say…
Dr. Fornum crisp and professional, raises an eyebrow and shakes her head not quite imperceptibly. Autistic persons do not understand these signals; the book sys so. I have read the book, so I know what it is I do not understand.
What I haven’t figured out yet is the range of things they don’t understand. The normals. The reals. The ones who have the degrees and sit behind the desks in comfortable chairs.
I know some of what she doesn’t know. She doesn’t know that I can read. She thinks I’m hyperlexic, just parroting the words. The difference between what she calls parroting and what she does when she reads is imperceptible to me.

From the very beginning, Moon writes Lou as a character who is aware of much more than what “autism professionals” believe he should be aware of; who is aware, and critical, of the ableist attitudes that surround him; and who has learned to make compromises, as real autistic people do, in order to navigate that ableist world and survive.

That ableist world has an impact on the major decisions of the story. Lou and his co-workers are not asked politely if they would like to be cured. They are pushed towards a cure, through most of the book, by a deeply unlikeable, pointy-haired CEO who has decided that he will fire them if they choose to remain autistic – even though the job at which they work is specifically one that takes advantage of their autistic strengths in pattern recognition. (Lou is a patterns thinker, and it’s implied that his co-workers all are as well.) It’s a deeply unjust and rather terrifying situation, and also illegal, as many characters in many scenes point out. Doubly so because the “cure” is an experimental treatment, never tested on humans before. There’s no guarantee it will work. There’s no way to predict exactly how much and in what ways the characters will change if they go through with it.

Lou thinks and talks about the injustice of his situation – as he should. He’s deeply confused by it and unsure of what to do for most of the book, but he’s aware that this is something his company should not be doing, that it’s not fair to make him and his co-workers choose between invasive medical treatment and losing their jobs, that the people involved – regardless of what they might say – do not have his best interests at heart. This makes his ruminations about what to do a good deal more interesting than the ruminations of a typical cure decision story protagonist.

This brings us to one of the things I liked less about the book, which is the bizarre disparity in what kind of actions different characters can take against this injustice. Lou is aware that his situation is unfair; everybody in the situation is aware of this. But the people who get to react against it fully – the people who get to say, holy shit, this is fucked up and dangerous and illegal as hell, this is not okay, Lou, let me get you a lawyer – are not autistic. Invariably, for some reason, they’re Lou’s neurotypical friends.

I want to be careful how I say this. It’s not that Moon thinks neurotypicals are great. There are a lot of bad NTs, like the people who devised this experiment in the first place, and Lou’s boss, and Lou’s stalker (yes, there is a stalker subplot, which if nothing else is a welcome distraction from the cure decision). There are also NTs who mean well but are mostly ineffectual, such as Lou’s immediate supervisor (who frustrates me, and that’s all I’m going to say about that). There are also good NTs. This is fine. The good NTs are, without exception, able to stand up for Lou, to insist that what’s happening to him is wrong, and to offer concrete help. They’re never ableist by accident or oblivious to an ableist issue. They even, mysteriously, know more about neurodiversity issues than Lou does:

“Lou, you’ve been holding out on us. You’re a genius.”
“It may be a splinter skill,” I say. Tom’s expression scares me; if he thinks I am a genius maybe he will not want to let me fence with them.
“Splinter skill, hooey,” Luciea says. She sounds angry; I feel my stomach clenching. “Not you,” she says quickly. “But the whole concept of splinter skills is so… antiquated. Everybody has strengths and weaknesses; everybody fails to generalize many of the skills that they have.”

All of which would also be fine, except that the other autistic people in the story never get to have these traits. The autistic people in the story have a community where they genuinely interact, and they can be confused and upset at what’s happening to them, but that’s about as far as their self-advocacy (or their advocacy for each other) ever goes.

The only autistic person who consistently and emphatically says that she does not want a cure, that a cure is not okay, is a woman named Linda. Lou and Linda don’t particularly like each other. Linda’s beliefs about autistic community are so extreme that she actively discourages Lou from making any friends who aren’t developmentally disabled; he should “be with his own kind”. Linda’s friend Emmy, who is not autistic, but has an unspecified related disability, takes these beliefs even further, and takes to following Lou and harassing him because she heard that he has a crush on an NT woman. (Emmy is not the stalker in the stalker subplot, but it’s implied that she could be. I should note here that I’m sure people with these beliefs exist somewhere, but I’ve never encountered them, and I follow a lot of activist-type people who REALLY hate cures.)

Autistic people in “The Speed of Dark” can’t seem to advocate for themselves unless they are unlikeable extremists – and even then, their advocacy is not particularly effective. Yet several NT characters, even though it’s not clear how they learned anything about neurodiversity before knowing Lou, get to advocate for Lou perfectly.

People talk about White Saviors in fiction who somehow get to be better at solving POC’s problems than the POC themselves are. I’m tempted to call Lou’s friends Neurotypical Saviors, but that might be appropriative. Let’s just say that it does not reflect my experiences with autistic and NT people in real life.

Anyway, apart from having some neurotypical savior friends and wondering what to do about being pressured into a cure, Lou gets to do several other interesting things. He competes in a fencing tournament and does quite well! He deals with his stalker in what ends up being a satisfying manner. He has philosophical thoughts about physics. There’s a lot of material in here that’s actually pleasant to read, and Lou spends a lot of time learning and growing, finding that he can embrace change and do things he hadn’t thought he could do.

So what does the learned and grown Lou end up eventually doing about his cure decision? To talk about that, I’m afraid we will have to go behind the cut, because there are SPOILERS. Big ones. ENDING SPOILERS. Seriously – this is a book about which a LOT of people say, “I liked it except for the ending.” So to talk about what I really think of “The Speed of Dark”, I am going to have to tell you the /entire/ ending. In detail. You’ve been warned.

Ready?

So, you know the skeezy doctors who are trying to run dangerous medical experiments on people who have been pressured into them? They only get skeezier as the book goes on. Not only are they pressuring people into trying dangerous experimental treatments (and it’s clear that at least some of them know about the level of pressure involved and don’t care), but there are holes in what they say about the treatment itself. They use slides in which, as Lou discovers, medical images are plagiarized and mislabeled. They try to rush people through the procedure all at once even when it’s pointed out to them that a slower protocol would be safer. They show immense signs of hiding something, and are condescending and dismissive to the autistic people who ask them about it.

Most interestingly of all, based on certain inconsistencies in what the doctors tell them, Lou and his friends come up with a theory that perhaps the experimental autism treatment is only a front. Autism treatment in adults is not very profitable, in Lou’s world, because the problem of treating infants has already been solved; only a few adults like Lou and his friends remain. Instead, Lou suspects that curing autism is only a test case for a much more ambitious scheme: if the doctors can rewire a person’s attentional processes, they will be able to make people Focused, like in “A Deepness in the Sky“.

(Okay, Lou doesn’t explicitly reference “A Deepness in the Sky”, but what he describes is basically exactly that.)

Less ominous, but very interesting from a neurodiversity standopoint, is Lou’s mental critique of the assumptions behind the doctors’ procedure. The doctors promise that their treatment (which has so far only been tested on apes) will allow formerly autistic people to do everything more easily, but the doctors, much like people who teach social skills today, seem to have a very limited understanding of what “everything” means:

All the pictures look posed, and the people may not even be real people. They could be–probably are–computer composites. We are supposed to become normal, real people, but they expect us to learn from these unreal, imaginary people in contrived, posed situations. The doctor and his associates assume they know the situations we deal with or will need to deal with and they will teach us how to deal with those. It reminds me of those therapists in the last century who thought they knew what words someone needed to know and taught an “essential” vocabulary. Some of them even told parents not to let children learn other words, lest it impede their learning of the essential vocabulary.
Such people do not know what they do not know… The doctor does not know that I needed to be able to deal with the man at the tournament who would not call hits and the jealous would-be-lover in the fencing group and the various police officers who took reports on vandalism and threats.
Now the doctor is talking about the generalization of social skills. He says that after the treatment and training our social skills should generalize to all situations in everyday life. I wonder what he would have thought of [the stalker’s] social skills.

Meanwhile, things are moving elsewhere; and, thanks to the actions of certain characters who are unfortunately not Lou, legal people get word of what’s happening. The pointy-haired boss is suddenly fired, and damage control people rush in to assure Lou and his co-workers that they will NOT lose their jobs; that there is no reason they should need to take the treatment unless they want to; and that a patient advocate and other important legal measures will now be in place to safeguard them throughout the rest of this process.

So much for that. Now, suddenly, Lou and his co-workers have a free choice; but, strangely, this only seems to make them more confused.

And that’s when things get weird.

Previously, Lou and his co-workers were having secret meetings to talk about the problems with what the doctors were doing, and what the doctors’ real plan might be, and what to do about it. But the meetings quickly devolve into a series of confessions: many people in the group really do want to be cured, even if it’s dangerous.

“No,” Cameron says. “I pretended to be [proud]. But really–what is there to be proud of? I know what you’re going to say, Lou-” He looks at me. He is wrong. I was not going to say anything. “You’ll say that normal people do what we do, only in smaller amounts. Lots of people self-stim, but they don’t realize it. They tap their feet or twirl their hair or touch their faces. Yes, but they’re normal and no one makes them stop. Other people don’t make good eye contact, but they’re normal and no one nags them to make eye contact. They have something else to make up for the tiny bit of themselves that acts autistic. That’s what I want. I want–I want not to have to try so hard to look normal. I just want to /be/ normal.”

One by one, nearly everyone in the group ends up agreeing. They want to be normal, and the really intriguing thing is that all of their reasons for wanting to be normal boil down to the same thing. They want career opportunities that were never open to them because of their neurotype; they want supportive and fulfilling relationships; they want not to be stared at, not to be stalked, not to be called names for being different. They want to be normal, because the way people treat them for not being normal is too painful to bear.

One by one, most of the characters – including Lou – drop their remaining concerns about the medical and ethical competence of the people doing experiments on them (even while Lou’s neurotypical savior friends, some of whom are doctors, point out even more methodological problems), and decide that yes, they do want to be cured, after all. Even Linda does this for some reason. Then off they go hopefully to the doctors.

In a book as aware of power dynamics and of ableist double standards as “The Speed of Dark”, this could be written as a tragic ending. I believe some readers do take it as a tragic ending – the tragedy is that people like Lou, who are so capable and so full of forward momentum and growth, would still take such absurd medical risks in order to be like everyone else. Because ableism. Because neurotypical people, even when not directly threatening their jobs, make the other option impossible.

Lou, before making his own decision, certainly seems to have thoughts along those lines:

I do not think I need to be healed, not of autism. Other people want me to be healed, not me myself. I wonder if the man [at the Pool of Siloam, a Bible story being referenced] had a family, a family tired of carrying him around on his litter. I wonder if he had parents who said, “Go on, try it; it can’t hurt,” or children teased by other children because their father couldn’t work. I wonder if some of the people who came did not come because they wanted to be healed, themselves, but because other people wanted them to do it, to be less of a burden.

As does Tom, one of the neurotypical saviors, when he sees Lou severely ill in rehabilitation shortly after the procedure:

“According to our tests, he was safely above average, so even if he lost ten or twenty points, it wasn’t going to put his ability to live independently in jeopardy. But he wasn’t a genius, by any means.” The prim certainty in her voice, the cool dismissal of the Lou he had known, seemed worse than deliberate cruelty.
“Did you know him–or any of them–before?” Tom asked.
“No, of course not. I met them once, but it would have been inappropriate for me to know them personally. I have their test results, and the interviews and memory recordings are all held by the rehab team psychologists.”
“He was an extraordinary man,” Tom said. He looked at her face and saw nothing but pride in what she was doing and impatience at having been interrupted. “I hope he will be again.”
“He will, at least, not be autistic,” she said, as if that justified everything.

But the tragedy is undercut by a series of other narrative decisions. Unlike his co-workers, Lou doesn’t ultimately make his decision because he is tired of ableism, although he does ponder that. What he ultimately ends up deciding is that being cured is the culmination of all the learning and personal growth he has been doing throughout the book. He has learned to try new things and embrace change; becoming neurotypical is the biggest change of all, and will open even bigger doors, including career opportunities (like working in space) that he always dreamed of, but were always off limits to him; so why not embrace that, too?

At which point I throw the book across the room and say “BECAUSE THE DOCTORS ARE INCOMPETENT AND LYING TO YOU AND YOUR BRAIN WILL BE MUSH, THAT’S WHY”. But, curiously, when Lou stops caring about all the ethical and procedural problems with what the doctors are doing, Moon seems to stop caring about them, too. Suddenly, everything is more or less fine, and although things seem touchy at first, the treatment ends up working fine, too. Yes, it was rushed and experimental and run by doctors who clearly fail to value their patients as people… But it somehow works fine anyway. And yes, as the epilogue briefly notes, it WAS a precursor to some ill-advised attempts to Focus people. Which ended up not working, and badly hurting people as a result… But that person wasn’t Lou, so it’s fine. Really! Lou is happy! And gets to work in space now, because being neurotypical is somehow the only admission requirement for that job! Even Tom, who was so horrified, ends up admitting to himself that Lou is going to be fine.

Amusingly, once Lou is neurotypical and fully rehabilitated, he is also suddenly able to appreciate the ethical aspects of his situation as his autistic self apparently could not:

Why did Lou-before agree to this? How could he risk so much? I would like to grab him and shake him, but he is me now. I am his future, as he is my past.

It’s as though Moon brought a good deal of sensitivity and awareness into her story, but also brought in a preconceived notion of the ending – cure good, Lou happy – and when the two began to conflict, the sensitivity just kind of got awkwardly stuffed into the structure that was already there.

The result is a deeply ambivalent book, and I feel deeply ambivalent about it.

I can see why some people – mostly, but not all, NT – swear by this book. It’s probably the least terrible cure decision story I have read. It deftly brings up issues of power and conformity that most writers, even writers who are otherwise portraying autistic characters very well, would brush aside. For readers who have never seen an autistic character’s concerns taken seriously, or his way of looking at the world treated with any validity at all, “The Speed of Dark” would rightly be a breath of fresh air.

But it’s a sad sign when the book that many of us and our allies look to for fresh air is also a book that assumes the most interesting story to tell about us is the story of us being eradicated. A book which, ultimately, decides eradication isn’t so bad, as long as the social pressure towards it wasn’t too direct.

I think that autistic readers need, and deserve, better.

The Verdict: Not Recommended

For a list of past/future/possible Autistic Book Party books, or to recommend a new one, click here.