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
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