Jan 31, 2007

Book Review: The Speed of Dark

While moseying through the SciFi/Fantasy section of the local Border's recently, one particular book caught my eye. It was "The Speed of Dark" by Elizabeth Moon. I was delighted to discover an unfamiliar novel by her, as she is one of my favorite authors. I flipped it over to read the back, wondering whether this was connected to either her fantasy or space opera series. To my amazement, it was neither. Instead, it turned out to be a piece of disability fiction, told from the perspective of an autistic man, set in the near future. Naturally, I picked it up and brought it home.

The majority of the story is told from the perspective of Lou Arrendale. In every event he is actually present for, we see the world from his point of view. When we meet him, he is an employee of a mega-corporation working in a specialized unit with other auties. He is content with his life and with being himself. He enjoys his job, has a comfortable routine, a crush on a girl, and is part of a fencing club. Then a new factor comes into his life: a new boss, who thinks he and his coworkers need to be cured. It starts out as an intellectual discussion, but the tension grows as his megacorp actually buys the cure and attempts to force them to take it. Now Lou must consider whether he is willing to lose his job and independent lifestyle, or whether he is willing to lose his identity.

Like any decently thought provoking book, this novel doesn't just answer the question it poses. It provides a lot of good cure vs anticure debate, explores the issue fearlessly, and allows the reader to come to his own conclusion of where right and wrong lies. It also takes on many side issues related to autism, including interpersonal relationships, religion, and the bias of the medical professions.

I loved this book... no, I fell into this book, occasionally surfacing for air and food. It was very hard to put down, and caused me a few sleepless nights. Whether you're aware of the debate over a cure or already have an opinion, this book provides much food for thought.


Jan 20, 2007

The Beauty of Mush

I love music.

This may seem a simplistic and obvious statement, but in my life it is not. I am not deaf/Deaf. I can hear at almost normal volumes - 80% in one ear, 85% in the other. However, once that input comes in, it isn't automatically translated into information for me to act on. Its just a mush, sitting there, demanding manual processing. A simple fan can reduce me to purely lip reading. As a joke, college friends once switched the audio language on a movie from english to french for ten minutes. I didn't notice, I just thought I was hearing more poorly than usual.

Interaction with the world in an audio way is a terribly stressful procedure. At any one time, I may be devoting as much as 60% of my mind to translating sound. It is very draining.

And yet, despite that, I love music. I can't begin to understand the lyrics the first few times I listen to a song, but I love music. Music makes sense, it fits into its context. It is still mush, but it is beautiful mush. When hearing the world becomes too much work, when I want to wince whenever the next person talks, I put on headphones and relax into the music, not having to process it, just enjoying the ride. It is the most relaxing thing I can think of.

And yet, not all music is created equal. Much of what other's call music feels like nothing but noise to me. This most often occurs when a song is written to do nothing but enhance a vocalist. To me, the vocalist is just another instrument, who conveys the message of the song a tad bit more directly than the music itself. The truly good music, the stuff worth listening to, delivers its message via the entire sound. The first time I heard the Yes song "Gates of Delirium" was purely instrumental, and not even the whole thing, yet I knew exactly what it was about. As the first sounds of the slide guitar sidle into your ears, you can feel the longing for peace, the sadness and loss the narrator has experienced. By the end of the song, you stand alongside him in the hope for a less war-torn world. "The Storm" by Blackmore's Night is so well composed that listening to it conjures the feeling of raindrops hitting your head, even if you can't understand the lyrics.

So, having said that, I would like to discuss Ludvwig van Beethoven. I can sink into much of Beethoven's work for hours, given the chance. Yet, some of his pieces fail to move me. With some research, I found that these most of those pieces were written before 1794, when his hearing began to flounder.

He wrote to a friend from the old country, Karl Amenda, in 1801 "Your Beethoven is most wretched. The noblest part of my existence, my sense of hearing, is very weak." In 1802, he wrote in the Heiligenstadt Testament, "O how harshly was I repulsed by the doubly sad experience of my bad hearing, and yet it was impossible for me to say to men speak louder, shout, for I am deaf. Ah how could I possibly admit such an infirmity in the one sense which should have been more perfect in me than in others, a sense which I once possessed in highest perfection, a perfection such as few surely in my profession enjoy or have enjoyed." He later went on, "what a humiliation when one stood beside me and heard a flute in the distance and I heard nothing, or someone heard the shepherd singing and again I heard nothing, such incidents brought me to the verge of despair, but little more and I would have put an end to my life".

He mourned his continuing hearing loss in a way I cannot truly understand, having been born with mine. He tried many different treatments, constantly seeking to be "fixed". He was finally considered deaf in 1806, yet between 1805 and 1815 he wrote many of his best and best known pieces, despite losing the "noblest part of his existence".

Beethoven's work in those years and years following are very whole music, not requiring the listener to be able to pick out separate parts. It is a music that resounds in the soul without any need to be processed. It is no surprise to me that he wrote it while he was losing his hearing. While he thought only of loss, he did not seem to consider the perspective on sound he gained, a valuable perspective, that it must also be beautiful in a mush.

I fear that today, at least in the developed world, so many of our Beethovens are caught for "early intervention", pushed into vocational training for things "they are more suited for" than they are interested in. I am also made sad by the modern commentary which still asserts that Beethoven fell into a joyless world of silence. With all of our society's supposed enlightenment, the masses still agree that impairment must be joyless, disability must cause despair, and that Beethoven is an inspiration for dealing well with his disability, rather than a bad example of doing so.

Mush and silence can be beautiful, too.

Jan 18, 2007

Book Review: The Time Traveler's Wife

I picked up "The Time Traveler's Wife" by Audrey Niffenegger on a whim, having read the book jacket a few weeks earlier. The description sounded vaguely interesting at the time, and the author's last name was very memorable. Now that may be nice and all, but why did I decide to do a review of it on my disability orientated blog?

It is a moving and thought provoking piece of disability literature. I would recommend this book as a good read.

The protagonist, Henry, has great difficulty remaining in his current place and time, especially under stress. Worse yet, although he can and does go backwards in time, he cannot change the timeline. The novel tells the story of Henry's life with this disability and the life of his wife and caregiver, Clare.

Henry is everything I could ask for in a disabled protagonist. He is depicted as a real person, not an angelic figure, not as a villainous one. He is a man who does his best to get by in a world that isn't fit to him, doing whatever is required to survive. His personality, habits, and outlook are logical and well integrated with his life experience. Similarly, Clare is not a caricature or embodied stereotype.

Niffenegger does not shy away from the painful parts of their life together. She portrays the frustrations, the obstacles, the loneliness, the little victories, and the magical moments each in their time. I was particularly impressed by both her treatment of their consideration of and attempts at having a child, and her look into how disability can so easily drive someone into overuse of drugs and embrace experimental treatments.

Now, having put that out there, I will make my confession. There is a section in the back of the book that I am still unsure of how I feel about. It deals with the acquiring of a second disability and the interaction between the two. The deep understanding of life with a disability the author shows in the first eighty percent of the book seems to vanish, and suddenly a much more negative and stereotypical view of disability is revealed. It makes sense in context, but it did diminish my enjoyment of the book. I would like to expound on this part, but do not want to spoil the surprises for anyone.

With that said, my assessment is that this book rates a 7.5/10

Jan 17, 2007

Disability Questions

I got these from Emma, who answered them very well. They seemed like an excellent place to start this blog.

1) If you could re-live your life without having your disability, would you?

This one is simple: no. My experiences throughout my life have been shaped by my various disabilities, and in so doing they shaped who I am today. They taught me patience, empathy, pragmatism, even cleanliness. Before my disabilities became more apparent to me, I was a very heartless and cruel child. They have shown me that my friends are truly my friends, and people who will never sweat the small stuff, or even the medium sized stuff. I would not trade my identity to suddenly be living the life of a person who could always hear, who had always been healthy and athletic and mobile. I have struggled, many a time, but my struggles have value.

2) Do you want people to show interest by asking personal questions about your disability?

As long as not all of their questions are such, certainly. Its natural for peole to be curious, and I'm glad they would rather ask than make silly assumptions. I believe the more people learn about how disabled life is, the more they will realize that we aren't all that different from them.

However, I very much dislike when people ask questions they would prefer not to have answered honestly and fully. If I am asked such a question, I had better have time to answer it properly, and you had better not act offended at my answer.

3) What is the hardest thing in life for you to do?

My biggest challenge is asking for and accepting help with tasks that I technically can do, but shouldn't be doing.

4) What is the hardest obstacle that you have to overcome often?

My pride, and other's assumptions of my capabilities

5) Do you resent people that try to help you?

I will glady accept help, even misguided help, from someone who is genuinely a kind person obviously looking out for my interests. Not only do they take "no" for an answer graciously, but they realize when they're getting in my way instead of helping me. (This often happens with would-be door openers.) I will accept that my friends are really trying to help me when they force food on me thinking I'm hypoglycemnic, even if I'm actually not.

I do resent people who help me in a patronizing manner, projecting an assumption of my incompetency. I resent people who help the poor wheelie to make themselves feel better, but ignore those who use crutches. I resent people who can't take no for an answer, or endanger me in the course of "helping". I resent those who insist on helping because I have to take something slowly, or think through the mechanics of a task. I resent those who help me to make themselves look better, or because they feel they have to. (Church people often fall astray of this one.)

6) Would you rather do things on your own?

If I can, without a lot of extra pain, without being a huge bother, absolutely.

7) Do you feel any anger towards God because of your disability?

I used to, but I don't anymore. Back then, I couldn't see any of the good results that could come of it. I wanted to be a missionary, I promised to do my best to become a missionary, and I couldn't understand why he took away my ability to serve him. I didn't understand what I had done so wrong that I would be cursed like this.

I have learned a lot since then. I am more of a missionary than I ever could have been traipsing around Lapland for two weeks. I have full faith that God has a plan for my life, and for my pain and trouble, and that it is worthwhile and will bear good fruit. I don't know what those fruit will look like, I suspect I won't know until I finish this journey. I have gotten to see small flowerings, though, and that will have to be enough for now.

8) What do you dislike the most of other people around you (ex- people staring, pointing, etc)?

I really hate it when people look away from me, but are talking to me. I can't lipread them, and the people who are doing it aren't familiar enough to me to hear decently otherwise. Other than that, I'd prefer they didn't throw rocks at me or anything like that. Pointing, staring, all of that is annoying but I can deal with it.

9) What is the best way for us to help you?

Step 1: Ask if I need help
Step 2: Assume I know what I'm doing
Step 3: Follow my directions, its better for both of us

10) Do you feel awkward when you are around people that are different than you?

I feel awkward around openly mean people. That is a difference I don't deal with well, finally being good natured myself. I don't do well among people who grew up with lots of money and the attendant luxuries. Other than that... I know and like people of many nationalities, levels of mental and physical ability, heights, interests, etc.

People are more alike than they are different.