The Speed of Dark
Back in June of 2005, anticipating the 15th anniversary of the ADA, I wrote about "The Excuse of Architecture" and cited a New Mobility story of pre-ADA prejudice, discrimination and really bad customer service. One commenter compared the phenomenon of disabled people being asked to leave restaurants (because no one wants to see them eat) to the prejudice moms face when breastfeeding in public. I disliked the comparison because the prejudice against disabled people is for being who they are while the prejudice against nursing mothers was for a (reasonable and necessary) activity they want to perform.
Although I am outraged by the way mothers in our culture are hassled for breastfeeding, I was, frankly, offended that discrimination based on disabled people's existence and simple presence was compared to discrimination based on anyone's actions, regardless of what those actions might be. It seemed reductive of my personhood and that of the members of any group of people denied access to public places because of a group identity, real or perceived.
I stand by that, so far as it goes. But the novel The Speed of Dark by Elizabeth Moon has me rethinking the complex interactions between identity, behavior and prejudice.
I've been aware of the connection before, of course. I've used a wheelchair or scooter for all mobility for 24 years now, and body language is necessarily different when you move through the world sitting down. Also, I've spent the last couple years experiencing how the use of a trach and ventilator have effected how I communicate with others and how people do or do not adjust to how my communicating differs from the norm. For example, my ability to speak past my trach partly depends upon the position of the trach. I can speak better when I lean forward, and I typically need to play with the trach a little or cock my head to control air flow past my vocal cords. This ends up sacrificing a lot of conversational eye contact, but because delays in response or an uneven voice that cuts out also complicate communication I find that behaving a little strangely is most efficient. As if I could emulate "normal" anyway, right?
Anyway, my ability to consider disability and behavior as often separate issues has been a matter of relative privilege, since a wide variety of impairments directly involve behavior or are diagnosed principally based on behavioral norms. The Speed of Dark is all about behavior and whose behavior gets to be seen as normal and whose is considered abnormal, wrong, and in need of being fixed.
It's the fictional story of Lou Arrendale, a middle-age autistic man, working and living in a slightly alternate world where people his age have had developmental assistance and workplace accommodations to mainstream them into much of society. Lou is a bit of a relic because younger generations have access to infant genetic manipulation that apparently nullifies any processing and behavioral differences caused by autism.
The bulk of the story is told in Lou's voice. I'll be honest -- the very first time I picked up this book, I didn't get very far, and it may have been Lou's voice that I wasn't ready to hear. That was over a year ago. When I picked it up again recently, I was immediately immersed, couldn't put it down, and became very invested in Lou's particular world view. Author Elizabeth Moon, who has an autistic son, won the 2004 Nebula Award for The Speed of Dark. It was also a finalist for the Arthur C. Clarke Award despite the fact that this isn't a science fiction story.
There's plenty of plot to the novel: Lou's boss pushes him and other autistic employees to take an experimental cure, Lou has a stalker hostile to him (and disability in general), and Lou also has a love interest. But it is the first-person character study of Lou, his analytical, philosophical nature, and his quest to be accepted for who he is that captivates. Despite portraying an experience she doesn't live herself, Moon has done her homework on autism. In an essay on the topic she writes:
What is it like to be an autistic individual? Only autistic individuals know for sure. Interviews with autistic people, their essays and books, all suggest that the autistic experience is just as varied as the non-autistic experience. Some people are happy. Some people are not happy. Some people have close friends. Some do not. The similarities imposed by the condition do not impose an emotional tone or even a core personality in the Myers/Briggs sense....Through the plot, Moon tackles two of the thorniest questions regarding disability: What is "normal" and what's the value of a "cure"? Lou thoughtfully explores both ideas:
One of the things which impressed me about our son, even before he could communicate in signs, gestures, or words, was the healthy quality of his emotional life. Yes, he screamed when he was upset, and I would have preferred a "Mom, I don't want to do that." But the things he enjoyed were reasonable, healthy things to enjoy: food that tasted good, music he liked, running around on the grass on a spring day. There was nothing weird about what he liked. His dislikes were harder to understand, but made sense once I realized that his sensory input was different than mine, and his responses were stronger. He felt hot when I barely felt warm. Tags in clothes (that I find only mildly irritating) bothered him a lot. He liked some colors more than others. Certain textures and flavors in food bothered him more. He liked some people and didn't warm up to others. These are perfectly normal responses in a small child--just on a different scale. His likes and dislikes tended to be more intense (typical of an earlier developmental stage: infants are usually very intense in their likes and dislikes.)
All my life I've been told how lucky I was to be born when I was—lucky to benefit from the improvements intervention, lucky to be born in the right country, with parents who had the education and resources to be sure I got that good early intervention. Even lucky to be born too soon for definitive treatment, because—my parents said—having to struggle gave me the chance to demonstrate strength of character.
What would they have said if this treatment had been available for me when I was a child? Would they have wanted me to be strong or be normal? Would accepting treatment mean I had no strength of character? Or would I find other struggles?
The construction of the novel and the metaphors used work with Lou's voice to help a non-autistic person relate to what Lou thinks and feels, what confuses and alarms him. The uncertainty of the cure Lou's boss is trying to coerce his employees to take and the information imbalance about the treatment which the boss exploits work together as a metaphor for the confusion Lou has in understanding how to navigate society and most social interaction. We can all relate to not knowing how to make a complicated decision, and in the novel's context we understand and relate to the confusion Lou faces because of his autism. That's assuming that the portrayal of Lou rings true for people with autism, of course.
Lou's hobby is fencing, and the detailed portrayal of his study and practice to improve his fencing skills works as a convincing metaphor for how treacherous and complex navigating workplace politics or nurturing a romance can be. Strategy and understanding the "opponent" are key. Fencing becomes a tool for seeing Lou's personal genius and charm as well as glimpsing what the life perspective of an autistic person might be.
Big spoiler follows. Act accordingly: The last 30 pages of the plot didn't resolve as I might have hoped, but from a literary perspective -- and a philosophical one -- Moon makes the story as compelling and thought-provoking as possible. Shorter version: I hate that Lou took the cure. I understand that his decision opens the debate up more than his deciding to accept himself as he is. On a personal level, I even relate well to the idea of using "the cure" to try something different and challenge yourself so completely. When I play with the philosophical question of a cure for my own impairments, it is not becoming normal or even being healthier that is compelling to me. It's enticing to consider taking the option that does not currently exist and challenges everything I know and am.
But I hate hate hate that "normal" wins. And I look forward to hearing what others thought of the book and topics it presents.
Other links about the novel:
2003 review in January magazine
2003 review at infinity plus
2005 review in Blog Critics Magazine
10 comments:
I've skipped the 'spoiler' at the end even though I'm tempted to go back and read it to stop me from making another disappointing purchase from Amazon.
Best wishes
Sounds like a very worthwhile read. Thank you for the excellent review, and the spoiler warning.
These discussions about normalcy -- I've been having them in my head and with others, but mostly in my head, my whole life. Even without being disabled or putatively disabled or whatever I am now for the first 40 years of my life, I have always been abnormal. This was made clear to me as early as the schoolyard and the neighborhood streets where we played our games. My blond eyelashes and super-white skin. My vocabulary. The clothes my mother chose for me. My parents' religion. So different. So abnormal.
I am used to this. I have been conditioned to expect this. So when I think about curing my putative disability, it's never about making myself more normal, just making my life less physically complicated.
Would I grow back my missing leg if I could? Yes, in a heartbeat. My life was already complicated and difficult when I had all my original parts. Being physically, emotionally, and mentally able did not prevent terrible things from happening to me, ever, and in fact aided and maybe even enabled my resilience.
Would I make myself "normal" in all other ways? If I could even figure out what "normal" is, I have to say no.
Life would be so boring if we were all the same.
I do not think our histories equate, of course. I just have my own joint perspective of having been "normal" and "abnormal" at the same time for most of my life, and now having also moved, as exactly the same person I ever was, into the world of physical impairment. I would absolutely dump the impairment if I could. I was unique before. That is who I am, not my missing parts.
Or so I always conclude when having these conversations with myself. :)
I am used to this. I have been conditioned to expect this. So when I think about curing my putative disability, it's never about making myself more normal, just making my life less physically complicated.
Yep. I know what you mean. That also translates, in my case, to simplifying the effort my family puts into my health. The financial costs and sleepless nights (due to lack of assistant care that they must then help with) that threaten their well-being, etc.
I love the speed of dark and did when I read it years ago, and then go so frustrated when people started going around talking about the "Curious incident of the Dog in the Nighttime" as the FIRST book on autism - but then, the book trickles on and on.
I too was disappointed in the end but since the character was faced with inevitable change, which for such a character was almost unbearible to think about (and almost unfairly unbearible to read about), I was unclear about the ending and who had written it; was it the mother, Elizabeth Moon, who might have spend nights away dreaming about such a fantasy cure; was it the character who sees the cure from an autistic point of reducing change - thus the "cure" is the less of the two possiblities of change- I couldn't tell.
Elizabeth: I guess I think it's the mother/author who was imposing her own wish for a fix on the character. And I agree the end was nearly unbearable to read: I whizzed through most of the book and had to set it aside for a day when I hit that part.
"It was also a finalist for the Arthur C. Clarke Award despite the fact that this isn't a science fiction story."
Well, as an autistic sci-fi fan who likes to try to break down people's perceptions of an arbitrary distinction between "sci-fi" and "mainstream literature", i have to disagree... if it's set in an alternate world where technology exists that didn't exist at the time it was written in the real world, then IMO it definitely qualifies as sci-fi...
Of course, i now have to track this down and read it...
I have never seen a meaningful distinction between "behaviour" and "mere presence". The case of a disabled person who eats in such a way as to make other non-disabled people feel disgusted or offended seems to me to be exactly the same sort of case as that of a non-disabled baby who eats in such a way as to make other non-disabled people feel disgusted or offended (breastfeeding).
In both cases, people's disgust, even distress, may be real. (Some people have phobias or PTSD triggers about watching perfectly ordinary bodily actions of other people, for some autistic people with sensory difficulties certain sights or sounds can be unbearable.) But this still gives people no right whatsoever to object to someone else's presence. They have the right to leave, but not to make the other person leave. (I would leave a restaurant if there were noisy children or obnoxiously macho blokes on the next table, but wouldn't ever consider it reasonable to ban noisy children or obnoxiously macho blokes from restaurants...)
Actually, these days i don't go to restaurants at all, unless they are self-service restaurants, because i have such a deep-seated problem with the whole concept of "being served", and the deeply uncomfortable power relations involved, which to me feel something like non-consensual BDSM. But that's another post entirely...
It also kind of sounds like the ending of the book might be in a tradition of very negative endings such as those of George Orwell's Nineteen Eighty-Four or Paul Park's Celestis.
The latter is very, very heavily recommended for anyone with an interest in "Othering"/"normalisation" and/or bodily identity/integrity issues...
if it's set in an alternate world where technology exists that didn't exist at the time it was written in the real world, then IMO it definitely qualifies as sci-fi...
I can see that. Though in this specific case, where the details of the autism treatments and cures are not explained much and happen "off-stage" as opposed to scientific explanations of space travel, for example, in a typical sci-fi story. Aside from the infant treatments and this third act cure that is so chancy some other small character is deeply damaged by it, there is nothing anywhere else in this story that is a scientific advancement, or even different from our current world, really.
I have never seen a meaningful distinction between "behaviour" and "mere presence". The case of a disabled person who eats in such a way as to make other non-disabled people feel disgusted or offended seems to me to be exactly the same sort of case as that of a non-disabled baby who eats in such a way as to make other non-disabled people feel disgusted or offended (breastfeeding).
I'll have to think on that first sentence, but I appreciate comparing the disabled person to the baby instead of the mother. That makes much, much more sense to me. Criticizing the mother's behavior is a bit like criticizing a personal aide's actions for their disabled employer: It does not get to the point of agency or actual need.
I read this book a few months ago. I enjoyed the portrayal of the main character, though I wasn't as convinced by the other characters, who seemed to be all good or totally evil. Well, that's a bit unfair, Lou's manager was a bit more complex.
I was so very saddened and shocked by the ending. I couldn't believe that character had made that choice. It just seemed so unlikely.
I didn't think that the author had chosen this ending as it was what she would have wanted. I perceived her voice to be best represented by the fencing teacher who was Lou's friend and mentor, and who was very upset at his treatment and saw that it would change the man he was completely. I think the ending was intended to provoke readers, to make us think about what makes a person the individual they are. There are some who think my son's autism is separate to his personhood, I think it's integral as it shapes how he perceives and interacts in the world.
Sharon: I hadn't thought of Lou's friend and mentor as being Moon's fictional representative. Other than Lou, he was my favorite character for the way he was, well, friend and mentor. He taught Lou and learned from Lou and was willing to help him yet respect Lou's wishes all the way. A complex character really.
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