Tag Archives: books

Recommended Reading for November 23, 2010

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miss_invisible at Take a little look… (DW): Origins

I often find myself wondering when, exactly, everything started. Have I always been dealing with mental illness? Have I always been, to greater or lesser degrees, disabled? At times the wondering borders on obsession, the inability of my anxious mind to let things go making me turn the thought over and over in my mind. Maybe part of me thinks that if I knew when it started, if I could find some moment and say, “This is when it began,” then maybe I could master it. I could understand it, I could control it, I could fix it. Ridiculous, obviously, but a lot what goes on in my head has fairly little to do with logic.

Shoshie at Catalytic Reactions: Afraid to Fly (trigger warning)

I particularly worry about flying the day before Thanksgiving.  The flights are so full, the airlines are looking for any excuse to boot people.  And now, there’s the added stress of the body scanners/grope searching.  I don’t want to go through the body scanners.  I don’t want someone to see my naked body.  I’m not ashamed, but I haven’t done anything wrong.  They have no right.

Lene Anderson at The Seated View: Everyday Hero

The click in my mind that connected that to the undertone of amazement that a person with a disability would adapt and go on with their life. It’s as if there’s a sense of awe that someone would face difficulty or pain without being curled up in a corner, gibbering in fear and how this bestows upon the person a regard as being a role model. Because it is apparently inconceivable to the able-bodied that it is possible to have a life while not being able to move your body the way the Abs do. Inconceivable to the point that there is this weird sense that disability conveys an alienness, an otherworldly not quite personhood.

BenefitScroungingScum at The Broken of Britain: Clare’s Story

I’ve been exhausted for as long as I can remember. I remember walking along in a kind of dream state when I was 7 or 8. I never went out anywhere as a teenager, I didn’t have the energy. At 19 I went to Germany to be an au-pair and remember the exhaustion of that. When I returned I went straight to University to study German. In a summer job in a museum in Munich I used to imagine making a den in the coaches that were part of the exhibit. I started to forget words. A nightmare for a linguist. That’s when it got worse. In my year out, I developed an allergy and was prescribed a high dose of antihistamines. I just slept through the rest of that year. The next year I developed a flu that didn’t go away and slept through my final year too.

Shari Roan for the Los Angeles Times: Sensory stimulation could prevent brain damage from stroke

Imagine a safe, inexpensive and drug-free way to prevent the long-term brain damage that often follows a stroke. No such treatment exists, but a new study involving rats suggests it might not take much to prime the brain to repair itself in the immediate aftermath of a stroke. For the rats, the simple act of tickling a whisker was enough to allow the animals to regain full cognitive function after a severe stroke — as long as the treatment was given within two hours.

Harriet Hall at Science-Based Medicine: Chronic pain: A disease in its own right

Herself a victim of chronic pain, [author Melanie Thernstrom] brings a personal perspective to the subject and also includes informative vignettes of doctors and patients she encountered at the many pain clinics she visited in her investigations. She shows that medical treatment of pain is suboptimal because most doctors have not yet incorporated recent scientific discoveries into their thinking, discoveries indicating that chronic pain is a disease in its own right, a state of pathological pain sensitivity.

The Absolutely True Diary of a Part-Time Indian: The Awkward Lines of -ist Language

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[The scene sets with OYD, a slightly pale yet never-the-less still quite indigenous woman, sitting down to her trusty Macbook Pro, a laptop named “Lappy”, who has seen better days. She sets down and opens up her “drafts” tab under FWD/Forward, where she notices that egads! she has been working on this book review for over a month, and Oh my! how it must have been a long time since she has completed one. She cracks her “double jointed” knuckles like she does it too often, tucks a strand of brown hair behind her ear. She drags the review out of “drafts”, dusts it off, reaches for anything caffeinated, and begins to type.]

The Absolutely True Diary of a Part-Time Indian 1st edition cover. A black background with plastic toy figures of a cowboy and an indian, with the title and author's name in chunky green and white letters.I like media where I can consume it, enjoy it, and get a sense that I am experiencing something that touches on experiences that are my own, that seems real to me with out over-exaggerating them (mostly). I also enjoy it when certain traits about characters are touched upon as a description, as part of who that character is, but then they are not brought up as Huge Deals throughout the entirety of the book.

These are a few things that really endeared Alexie Sherman’s The Absolutely True Diary of a Part-Time Indian to me. Sherman created a protagonist “Junior”, who was born into the world with several oppressions, living on the axis of poverty, race, and disability. Within the first few pages of the book Junior gives a pretty good run down of how each of these things affects his life, and has always affected his life from the moment he was born. From never having quite enough to eat, to the way his “grease on the brain” has given him a stutter and seizures.

But that is where Alexie leaves the discussion about Junior’s disability. It is just a part of him, a description of his character. It isn’t some great obstacle he has to overcome. His disability isn’t some plot point, and it doesn’t help the other people around him become inspired about trying harder or appreciating their lives more. In fact, he goes into great detail early on, in those first few pages, to explain that the reservation kids often bully him. From an excerpt on NPR:

You wouldn’t think there is anything life threatening about speech impediments, but let me tell you, there is nothing more dangerous than being a kid with a stutter and a lisp.

A five-year-old is cute when he lisps and stutters. Heck, most of the big-time kid actors stuttered and lisped their way to stardom.

And, jeez, you’re still fairly cute when you’re a stuttering and lisping six-, seven-, and eight-year-old, but it’s all over when you turn nine and ten.

After that, your stutter and lisp turn you into a retard.

And if you’re fourteen years old, like me, and you’re still stuttering and lisping, then you become the biggest retard in the world.

Everybody on the rez calls me a retard about twice a day. They call me retard when they are pantsing me or stuffing my head in the toilet or just smacking me upside the head.

I’m not even writing down this story the way I actually talk, because I’d have to fill it with stutters and lisps, and then you’d be wondering why you’re reading a story written by such a retard.

Do you know what happens to retards on the rez?

We get beat up.

At least once a month.

Yep, I belong to the Black-Eye-of-the-Month Club.

Sure I want to go outside. Every kid wants to go outside. But it is safer to stay at home. So I mostly hang out alone in my bedroom and read books and draw cartoons.

Then, he moves leaves it there. We know he deals with these things as part of his life, but they do not define his life. Even the most horrible and hurtful parts of his life with disability are not defining his life.

Some other things that are not defined by Junior’s particular disability:

  • His grades in school — He does well in school, and this point becomes part of the main plot, so I won’t give too much away for anyone who plans to read this book.
  • His ability to participate in sports — Junior plays many sports, including contact sports. He is a good basketball player, playing on the school’s team.
  • His ability to have romantic relationships — Despite his believing how shallow it is, Junior has a girlfriend, and as it turns out, she actually likes him! Imagine that!

The other aspect of this book that I enjoyed, though I don’t expect every reader to view the same way, is that the Indian Reservation depicted has a lot of truth to it from my own experiences of having grown up on and around my own as a girl. Twenty, and even ten years ago, our reservation life was not so far off from the one described here, with the exception of perhaps the climate being slightly different, and perhaps I was too young to understand and remember anything about crime rates. But there was poverty, and then there was crushing poverty where I am from. There was alcoholism, though I would venture that perhaps it wasn’t the hot-button stereotype that I feel is portrayed at times in Alexie’s book. I don’t know. Every Native community is different, for sure, with their own unique set of problems. While I feel that there is a lot of truth to what Sherman Alexie has created, I also feel that there is a sweeping generalization. So, it hits and it misses, and I would encourage you to read it for yourself and decide what you think.

There are a lot of instances of language that I would not recommend in a progressive or social change setting going on here in this book. I see it being useful and very much achieving its purpose, for example, there is a very racist joke told by a white boy that Junior meets on his first day of school, using the “n”, which I will not repeat, but which is disparaging to Natives and Black people alike. Junior demonstrates an intolerance for it, without missing a beat, and in Junior’s point of view, the kid respects him for it. But, I have to wonder, is it because of how Junior addresses it, or because this particular student realizes that what he said was hurtful and wrong? The demonstration of how wrong racism is in YA literature is something I want to see more, but I question, sometimes, the ways in which we see it handled. There is almost no discussion or consideration of why this is wrong, just the very visceral use of very hateful words (like above, with the use of the “r” word in so casual a context). Just like using rape as a metaphor to show that a “bad” guy is bad, I don’t need to see or read -ist language for shock value to confront -isms. However, a well placed word could have the proper effect if viewed through the proper lens, but I don’t know if that is quite so obvious here. Junior simply reacts, saying he has to defend Black people, and Indians, but he doesn’t go into much else.

I will also note on the Wise White Person, or WWP, as I will. It takes a WWP living on the rez to point out all of Junior’s problems early on, and essentially Save Him! from the Rotten Destitution! Without a WWP, why poor Junior might be dead, the victim of a trailer fire started by grease from frybread, helplessly drunk and passed out.

The Absolutely True Diary of a Part-Time Indian, is an excellent book, worth reading, for many reasons, but I caution you, gentle readers, there are many themes addressed, in very direct and raw ways that I am still not sure that I wholly approve of, and yet, as a non-white, Native American, woman, with a disability, I am not fully sure that fully disapprove of all of them either.

Oh, except for the sexist language. I found no use for that at all. I found no point where that taught any lesson, except where young boys were using it to show that “Hey!  Women and girls’ bodies are weak, so calling you a woman or a girl body part means you are weak! Har har!” You get no points there, Alexie. Misogyny wins again! Whee!

Fiction Book List!

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Almost, but not quite, a year ago today I put a call out on my personal journal looking for recommendations or lists of YA books that feature characters with disabilities.

From that call out, I got just under 200 books (many listed multiple times), as well as lists of book recs from other sources.

I’m still going through and sorting them, looking for reviews of the books, but I thought it might be interesting to discuss here any pros & cons of the books listed, and the books that are included in other lists.

Part of the reason I like books like this is that the response to pop culture criticism from a disability-rights standpoint often is met with “But, what sort of stories do you want us to tell?” or “Telling such stories is difficult!” I want to generate a list of fiction that shows that yes, people with disabilities have stories – and not all of them are magical cures or dreams of being non-disabled. (Certainly not all of the books below don’t fall into those various traps – in the document I’m finishing up right now, many are flagged up as problematic, so this is more a book list than a book recommendation list!)

So, share your thoughts! What books would you recommend? Do you see any books on this list that you want to gush about, or point out as a problem? Anything you’d love to discuss with other readers? Feel free to link reviews of the books (your own or someone else’s), especially if they specifically mention the disability-related aspect.

Please flag up any spoilers in your comments.

Schneider Family Book Award Winners List

The Schneider Family Book Awards honor an author or illustrator for a book that embodies an artistic expression of the disability experience for child and adolescent audiences.

The Young Adult Library Association does lists of titles under certain topics every year.

Bodies: “They come in all shapes, sizes, and abilities…love it or hate it, you only have one body.”

What Ails You?

K-State Library Subject Guide: Disability.

Below the cut is the list that was generated from the comments on the above-linked post, sorted by author.
Continue reading Fiction Book List! →

The “Gifted” — Who Needs Assistance When You Just Work Hard Enough?

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Terry Goodkind’s Sword of Truth series, recommended to me by The Guy, my partner of several years now, whom I thought loved me, seemed innocuous enough. I thought it a simple fantasy series woven with a love story (“woven” here should read more like a nice cudgel to the head), which I was looking for. I thought it would be a nice epic fantasy, like Kushiel’s Dart, or something to sate my need for a good run of fantasy novels.

I however, didn’t heed Anna’s warning, when she asked me whywhyWHY would someone who loves me recommend a book series to me where a chicken is written in as EVIL personified (this is actually a simplification of the storyline, but it is true, nonetheless…), and as it turns out I think Anna may love me more. Who knows. Maybe I was hooked by the way the first two books ended with just the most convenient and precious heterocentric endings ever (there is one brief nod in the fourth book to homosexuality that seems it could be positive, but then it ends sadly, and seven books later there is no happy ending for this character).

The Sword of Truth series, however, does have many good qualities. It has several well written female characters whom I fell in love with, but, as I will write more about at my home blog, all seem to be written to be smitten with and to be in the service of the central protagonist, Richard Cypher/Rahl. They simply fall all over themselves to serve him, to love him, and to swear their lives to protect him with everything they have. Even if they were once evil or if they have tendencies to be evil (it’s just their way, you see, some women can’t help it), they somehow over come it because his presence is enough to ignite a spark to make them want to fight for their own lives him. I mean his cause.

But the Sword of Truth series isn’t just an innocent fantasy series. It isn’t even a series filled with tropes about women characters that I love that happens to beat me upside the head with forbidden romance and a love forbidden to procreate. It is a cautionary tale that warns of the evils of allowing communism to take over your life. This strange story of caring for your fellow man is bent into a monolithic monster of a machination that kills everything it touches. It simply asserts that you must live in misery for that is the only way that everyone can possibly meet the needs of every human evil, and makes the horrible and incorrect logical leap that religion is somehow tied to it, that this life is meaningless and that goodness can only be obtained in the hereafter. I can’t say I disagree with the atheistic themes, but really, a horse can only be beaten so many times before I glaze over and gloss over entire pages of exposition and soliloquy.

To be righteous in this world that Mr. Goodkind has created you must be willing and — key word alert here — able to fight for your own life and protect it with everything you have, up to and including killing those who would take it from you. With sword, with your bare hands, with magic if you are … gifted.

Yes, “gifted”. Being born with the ability to use and be touched by magic is considered a gift, which is not an uncommon theme in fantasy fiction and pop culture, but Goodkind takes it a step further, it seems to me. It is almost as though magic is another sense, an ability above and beyond that makes up for any other sense you may lack. Because if there is one thing that is all but lacking from this world that Mr. Goodkind has created, it is disability on the side of the bringers of good.

Even Adie, the “bone woman” (who oddly enough, having the speech pattern “I be” in the books*, is depicted as a non-white woman in the television series equivalent Legend of the Seeker even though that is now how she is described, but she is All Exotic! with Bones!), who had her vision stripped from her in her youth by a group of anti-magic zealots known as The Blood of the Fold by pouring bleach in her eyes, has learned to see. Her “gift” has enabled her to see. In fact, her vision, as is noted many times in the books, is often better than those who must rely on their ‘non-gifted’ vision.

I am going to drop the quotes from here on out, because it is getting tedious, and I think you get the point.

Adie never had to learn how to access the world around her. She never had to learn how to stumble around and feel with her other senses. She did, however, have to learn how to see with her magic, which made up for the vision which wasn’t there. This gave her the ability to be worthy, in the world that Goodkind created, to be able to fight for her life, and be allowed to live. People should just try harder, as Adie did. If you can’t get by in life, it is your own fault, and you are not contributing properly to the artwork that is the nobility of man!

You can understand why I was having a problem here.

Normally with pop-culture and fiction, there aren’t really absolutes, and I admit that there are multiple ways of interpreting things, but Goodkind has done a unique thing here: he has created a world of moral absolutes. This is right and this other things is wrong. What Richard Rahl (the protagonist) believes is right, and what he is against is wrong. There is clear good and evil, and the lines are rarely blurred. This use of a gift of magic allows people who otherwise have flaws to remain on the correct side of Richards moral compass. Richard, and Goodkind himself, could be described as Objectivists, which I think would clear up my frustrations. It should have set off alarms as soon as the philosophy lessons started to seep into my fantasy novel. Except OOPS! Mr. Goodkind says he is not a fantasy writer, merely a fiction writer he says (fuck you, fans!), so I have been wrong all along…

But Adie couldn’t be useful to the story, she couldn’t be the powerful and badass sorceress that she is depicted as being if she was indeed blind, amirite? Because if she was wasting all of her time trying to adapt to a world that was refusing to make accommodations for her she wouldn’t be able to fight for her individual life, or for Richard’s noble cause of laissez faire Capitalism freedom for all mankind (and I guess some of those womenfolk too).

The only time that her magical eyesight didn’t work was when she was faced with a woman, Jennsen, who was born without even a spark of the gift, called a “pristinely ungifted” person. She can not be touched by or interact with magic. Turns out, that Jennsen is Richard’s half sister, and her being ungifted is the bi-product of Richard’s gift. There can be only one! She has to be ungifted so that he can be gifted. It is very complicated, and there is an entire race of people on whom Adie’s magical eyesight doesn’t work! And Jennsen had to help Richard rally them up, because they were blind (oh the tropes and ableist language abound!) to evil, and their pacifist asses wouldn’t raise a finger to fight for their artwork of individual self interest.

I was just frustrated beyond all belief.

So if you want a nice stew of -ism and fuckery passed off as philosophy and disguised with characters that you will certainly love, I recommend Goodkind’s Sword of Truth series. All eleven (soon to be twelve!) books of it!

EDIT: 01 Sept: I forgot a couple of links when I finished this post. Apologies!

Talking down disability while talking down to young people

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Contains spoilers for A Darkling Plain, so be warned!

I’ve just finished up Philip Reeve’s Hungry Cities books. They’re really good, and I’d recommend them to any young adults reading, or anyone else who is into YA. Mortal Engines, Predator’s Gold, Infernal Devices and A Darkling Plain are full of complex female characters in a well-realised world, engaging with lots of ethical meatiness. The story is essentially about a future time in which there are mobile cities that move around finding smaller cities to “eat” for resources. Anti-Tractionists, meanwhile, live in static settlements and fight against the Municipal Darwinists. I have a few problems with the books, but I’ll keep it brief and address the rather irritating disability fail that starts off in Infernal Devices and runs through A Darkling Plain.

General Naga is the head of the Green Storm, which is the dominant Anti-Tractionist force for a good portion of the series. He has sustained war injuries and now an exoskeleton-type device allows him to move around. It’s emphasised that he’s a good and honourable man, gracious to all and working for peace. Well, up until he thinks Lady Naga has been working for the other side, at which point he is violent towards her, imprisons her and turns back to war. Almost inevitably, there is disability fail. To focus on the last book, (because that contains most of the references to General Naga, and because that’s the only one I have to hand!) alarm bells were ringing for me on page 35. Here is what goes through the mind of young Anti-Tractionist Theo Ngoni as he converses with General Naga’s wife, Lady Naga (aka Dr Oenone Zero):

‘He had seen Naga; a fierce warrior who clanked around inside a motorized metal exoskeleton to compensate for his lost right arm and crippled legs. He could not imagine that Dr Zero had been in love with him. It must have been fear, or lust for power, that had made her say yes.’

At this point, I thought, of course not. It’s going to turn out that she really loves him and married him for who he is, and this is just to set up breaking down that perception of unlovableness, right? Wrong. ‘She did not love him. She was just grateful for his protection, and glad that the leadership of the Great Storm had passed into the hands of a decent man. That was why she had been unable to say no when he asked her to be his wife.’ Naturally, a woman marrying for security. Part of my mind says that plays into the complexity of the relationships in these books, and it’s good to read something written for young people in which the happily ever afters aren’t really. Another part is thinking about how this sort of thing happens over and over again in popular culture, you know, where a disabled character isn’t being loved despite their being disabled or something.

And it goes on much like that, really, with lots of references to the crippled man! with his unrequited love! and he’s ‘half a man, wrapped up in clanking armour,’ according to one character, did we mention?

General Naga sacrifices himself in the end for the greater good, which frees young, unblemished Lady Naga from her horrid situation (tripping the sarcasm detector there). This “the cripple must die” dynamic that comes up so much in popular culture is really troubling, because its prevalence is just another betrayal of the societal view that disability is totes the worst thing ever and how can you live like that and why won’t you die and stop messing up my pretty world?! At the same time, he dies a hero, saving the people of London, following an illustrious career. Which is not exactly nice, but something.

What stories like this do is assume an abled readership. At least, I hope so, because consciously putting all this stuff onto young disabled people is a bit much. If a good part of writing fantasy/SF/spec for young people is to assist them in escaping and building up their imaginations and experiences, where are disabled youth to live out fantasy lives? Disabled youth are quite as deserving of an imaginative playground in which to develop their minds and thought as anyone else. In fact, I think it’s particularly vital that people so marginalised in the world be given opportunities to work at rich internal lives. What stories like this do is present full worlds and characters, contrasted with a bundle of cliches making up the one stock disabled character, and in doing so put disabled readers in their place: not deserving of anything more than that, and aren’t you glad you got represented at all? (Hello Doctor Who!) Which is not to mention that one dimensional characters represent another way of talking down to younger people. Younger people are quite capable of relating to characters outside of tired stock character types.

And at the end of the day, I find that these representations take me out of a story and just distract me. It’s poor storytelling, often inconsistent with the quality of the writing otherwise. It’s insulting to the audience, disabled and abled, young and old and in between.

[Cross-posted at Zero at the Bone]

Book Review: Bright-Sided: How Positive Thinking Has Undermined America by Barbara Ehrenreich

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A word of caution: This review is going to be quite short, as I have been struggling with “getting words out” for the past few days. Regardless, I think this is an important book, and might be of interest to my fellow FWD-ers (bloggers and commenters!).

I touched upon the whole positive thinking movement (and why it offends me) at this very blog a while back; I’ve long had problems with the “Just think POSITIVE!” suggestion and attendant movement, and one piece that really got to the root of things, at least for me, was Ehrenreich’s 2001 essay, “Welcome to Cancerland,” which is about how positive thinking–bejewelled and be-ribboned with a heaping helping of traditional femininity and stereotypes about women, and particularly women who have survived breast cancer–has, for lack of a better word, swallowed the breast cancer “awareness” movement. [The essay is available at her website.] A revised version of the essay appears as the opening chapter to Bright-Sided, and Ehrenreich adds just enough salient facts to make reading the newer version worthwhile and not at all confusing to non-sciencey types like myself. (Ehrenreich has a PhD in Cell Biology.)

That said, the remainder of Bright-Sided proved to be a fast, engaging read. In fact, I wish it had been longer, and one chapter that could have used an expansion was the closing chapter on positive thinking’s effect on the recent U.S. economic crash. The book is also extremely U.S.-centric, but since positive thinking is one of those things that seems to have really taken flight in the North American consciousness, this is not particularly surprising. Unfortunately, with the exception of the breast cancer chapter, Ehrenreich does not specifically cover disability and/or chronic illness issues as they relate to the positive thinking movement. However, her book as a whole may have been designed to be rather “general” since the positive thinking movement impacts many people (for better or worse), not just those with disabilities. This generality is both a strength and a weakness, and I think Ehrenreich’s writing saves her points from being too non-specific.

I will leave you with a quote that stuck with me, from the book’s second chapter:

But in the world of positive thinking other people are not there to be nurtured or to provide unwelcome reality checks. They are only to nourish, praise and affirm. Harsh as this dictum sounds, many ordinary people adopt it as their creed, displaying wall plaques or bumper stickers showing the word “Whining” with a cancel sign through it. There seems to be a massive empathy deficit, which people respond to by withdrawing their own. No one has the time or patience for anyone else’s problems…When the gurus advise dropping “negative” people, they are also issuing a warning: smile and be agreeable, go with the flow–or prepare to be ostracized. (56-57)

Guest Post: Book Review: Everything Beautiful

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Karen Healey is an able-bodied author of young adult literature and a PhD candidate at the University of Melbourne. You can read more of her musings on reading, baking, and social justice at her blog, Attention Rebellious Jezebels.

Everything Beautiful, Simmone Howell. Pan.

I am the maniac behind the wheel of a stolen dune buggy. Dylan Luck is at my side. We are tearing up the desert, searching for proof of God.

Riley Rose’s mother died two years ago, when she was fourteen, and everything went to hell. Now her father and her new stepmother have sent her to a week-long camp at Sprit Ranch, AKA the Palace of Suckdom.

I decided I would pack only frivolous things: eyelash curlers and costume jewellery and little jars of antipasto. If I had to go to Christian camp then I would go as a plague. I would be more like Chloe: outrageous and obnoxious — call me a plus-size glass of sin! It wasn’t until Melbourne was wavering behind us like a bad watercolour that reality hit. As the kilometres ticked I sank into my seat and practiced holding my breath. On a silo just past Horsham someone had painted an escape button. ESC – ten feet high against a concrete sky. I almost asked Dad to stop the car so I could press it.

There, she meets Dylan, who used to be a bullying jackass before the accident that cost the use of his legs. Now he’s just sort of a jackass, and his old Bible Camp friends don’t seem to know how to act around him in the chair.

Craig came forward. “Here you go, dude.” He clamped a hand on Dylan’s shoulder and handed him a shiny bundle. Dylan was slow to unfold it, too slow for Craig, who moved across and shook it out, and held it up for display. It was a vest identical to his. Craig draped it over Dylan’s shoulders and announced: “So this year there’s two Youth Leaders!” … I whistled and threw my lavender sprigs at the stage. A flower landed on Dylan’s chest. He watched it fall to his lap and then he picked it up. I noticed his cross then: thick and silver, hanging on a thin leather string. As he held the sprig of lavender, his face changed and I had a sudden flash that he looked on the outside how I felt on the inside: Lost. Moody. Superior. Charged.

Dylan smelled the flower and stared straight at me. Then he put it in his mouth and ate it.

HIJINKS ENSUE. Hijinks include [minor spoilers!] (skip)
Daring Escapes, Heartfelt Confessions, makeovers, loveable doped-up friends, the theft of a shroud, Mean (Christian) Girls who turn out to be real girls, and one of the sweetest, hottest, most beautiful love scenes I’ve read anywhere

I LOVE this book. I love that the two main characters have bodies deemed unacceptable by Western standards – Dylan because he’s a wheelchair user, Riley because she’s fat – and yet are developed as a romantic and sexy pair. I love that Dylan is not a Ministering Angel Who Inspires Us All, but a complex person who’s a moody jerk a lot of the time, but charming and wickedly entertaining a lot of the rest. Howell manages to pack a good deal of wheelchair etiquette and disability awareness into the narrative, but not preachily; mostly it comes as Dylan sarcastically noting something that Riley’s never had to consider before.

In fact, every person in this book, however quickly drawn, comes across as a portrait, not a caricature. Characterisation is Howell’s great strength. No! It’s dialogue. No! It’s humour. No! It’s pace.

Wait, maybe it’s description:

The sun dipped. The sky became the near-night blue of shadows and stolen moments. Now the ground was firmer. The land had flattened out and Dylan’s tracks were no longer visible. Here and there, I found little reflecting pools, and then at last I saw one great big one. The lake was a giant mirror reflecting a crazy-paving of tree and sky. Up ahead I saw a monster gum tree with wandering roots that looked like they’d waded right into the water and thought, fuck it, let’s stop here. Dylan must have thought the same thing. He was in his chair, facing the water, a little way back from the edge.

Everything Beautiful is. Highly recommended. I don’t know where it’s available outside Australia, but the Book Depository has it here, although I have Thoughts on that particular cover.

Some Thoughts on The Time Traveler’s Wife

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This post contains spoilers for the book and the film.

The other day I went to see the film version of my favourite book, Audrey Niffenegger’s The Time Traveler’s Wife. I was expecting a more gooey version of the book, and was a little apprehensive about the treatment of disability, but I wasn’t expecting what I got.

The time traveller of the title, Henry, travels due to a genetic condition called Chrono-Impairment. He experiences this as inconvenient and unpleasant: he is pulled out of his daily life and often to quite painful times in his past.

In the book, part of the way Henry convinces geneticist Dr Kendrick that his time travelling is real by giving the latter information about his son, who is soon to be born. One of these details is that the son, Colin, has Down Syndrome. And just about everything said about him is along the lines of what Henry says just after the birth: ‘I’m sorry about Colin. But you know, he’s really a wonderful boy.’ Dr Kendrick’s reaction to his son’s ‘abnormality’ is less pleasant.

But Colin doesn’t appear in the film. There’s a part of my mind that was glad we missed what would surely be a nasty mix of okay and fail. But with his exclusion, we also missed the presence of half the disabled characters in the novel. And I know you have to make changes for film adaptations, and that’s fine. Though it’s curious how all the queer characters and most of the non-white characters were taken out for the film version, too… (Which is, again, good on the one hand because you miss all the painful stereotypes, but bad on the other as, you know, there are few non-white or queer people.)

But I said half the disabled characters, so let’s address the other one: Henry.

In the book, Henry gets hypothermia when he ends up time travelling to a park in winter. He loses his feet and spends the rest of the novel in bed, then in a wheelchair. In the film, only one of Henry’s legs is affected, and he keeps it. Both Henry and Dr Kendrick emphasise that he’s not going to be in the wheelchair for long, If it had just been Henry saying that, I would have thought, okay, that’s a reference to his knowledge about his premature death. But as Dr Kendrick says the same, and as Henry never stops using the wheelchair until his death, there’s no point in saying it at all. Except to reassure the viewers that Henry is not one of “those people” and this is just a temporarily blip, that is. It’s okay, everyone, don’t panic; Henry isn’t disabled.

Henry learns about his upcoming death (oh, time travel) not long before getting hypothermia. I am not a fan of the emotional line formed here; to me the emotional message, if not the letter of the thing, is that disability is a stage in dying, that disability is a kind of pre-death. Which, come on. Henry isn’t dying up until he is killed. In the book at least the particular importance of Henry’s needing to be able to run is explained (it has often been a matter of survival when he is thrust about in time) (though it actually isn’t in any of his travels following the loss of his feet). In the film, we just have abled to disabled to dead. It leaves a bad taste in my mouth.

But what I found most strange in the discrepancy between the book and the film was Henry’s attitude. In the book, Henry is largely miserable once he loses his legs. In the film, Henry is a Good Cripple. It’s a pretty big contrast, and again the film takes out emotional complexity and loses the opportunity to highlight the marginal.

But now we come back to Henry’s time travel, and here we hit some more complexities. Can we call our chrono-impaired hero disabled? Within the world of the text(s), Henry doesn’t appear to treat it as such, as best I can recall from both texts. But irrespective of whether Henry or those around him understand him as disabled, as viewers and readers we can draw out a fair few messages about disability. There are all sorts of nebulous ideas in my head on time travel as impairment, and Henry’s search for a cure, and the issues with Clare and Henry having a baby. To be honest, I haven’t settled my feelings on this. But here are some ideas in Time Traveler’s that slot into popular ideas about disability…

  • Let’s make it a super power!
  • Long suffering partner
  • Should we have a kid with this condition? Or would that be unfair?

… and some of the difficulties Henry faces…

  • His impairment isn’t known about or dealt with in everyday society and he has to keep it a secret. In fact, he is scared for his job. Scary invisible disability?
  • He is repeatedly arrested because of a lack of understanding of his condition.
  • He struggles to find appropriate medical care.

What else can you think of?

So the novel and the film versions of The Time Traveler’s Wife have problems in different respects. But I’m finding the differences between the novel and the film the most interesting of all.

The Invisible Disability

media and pop culture, , ,

Moderatrix Note: Originally posted at random babble… on 15 September 2009.  At the time the movie was just out over the previous summer.

Because of the new movie that is out I am currently re-reading Jodi Piccoult’s My Sister’s Keeper.  I read it about five years ago, but I read that the screenwriter for the movie changed the ending (why do we do these things, Hollywood?  The movie ending sounds awful, but more on that after I see it), so I thought I would brush up so that my memory is fresh when I see the movie.

There is one character in the book, Campbell Alexander, who is a lawyer who agrees to take Anna’s (the central protagonist) case for medical emancipation from her parents, pro bono.  Alexander has a service dog that assists him.  The need for the dog becomes something of a running joke throughout the book, because everyone assumes that if he has a service dog he must be blind, which he is not.  He cracks a series of jokes, including “I have an iron lung, and the dog keeps away from magnets” to avoid directly answering any questions.  It isn’t until the end of the book that you find out why he actually needs the dog (but re-reading this I find that there are many fairly blatant clues to the acute reader), and no I will not tell you, just in case it happens to be omitted from the movie. I am a jerk like that.  =)  While Campbell Alexander’s situation provides a good many of moments to laugh in a book that is incredibly tear jerking, his situation is all too familiar.

See, the reason Alexander feels the need to crack jokes and be sarcastic is because his need for the dog, named Judge (…ha ha!  I C wut U did there!) is constantly questioned.  Every time he walks into a restaurant, a hospital, a public building and despite the fact that Judge is described as wearing a service dog’s harness he is told that dogs are not allowed.  When he mentions that Judge is a service dog the common response is “But you aren’t blind!”.  Campbell Alexander’s reason for needing a service dog isn’t obvious to the casual person on the street, but his need, his disability, is just as real in the world created in the book.  But were he a real live person living in the world today his disability would be met w/ the same types of skepticism.

Even though it is becoming more common to be diagnosed with what were previously thought to not be real conditions the idea of an Invisible Disability is still foreign to most people.  People living with conditions such as Fibromyalgia, Rheumatoid Arthritis, Sarcoidosis, any number of non-neurotypical disorders, or Lupus, just to name a few, go through chunks of their lives never showing visible signs of the often constant and frequently overwhelming pain that sometimes limits their lives.  I know that when I am on the subway in Seoul I am given odd looks if I use a seat that is left open for PWDs, even though my joints and legs hurt so much that standing brings tears to my eyes, because no one can see my pain or know my need.

It is easy to assume looking at a person that they are completely able-bodied.  TAB has become the norm to society at large, and in order to be anything outside of the default you have to display physical signs of your difference.  That is what our society today demands.  A wheelchair.  A handicapped parking plate.  A cane or seeing-eye dog.  The lack of these markers can mean the difference between accessibility with independence, and limitation.  My need for accessibility isn’t obvious unless I point it out, but it is real.  It’s the reason I have to ask if the single’s lodging on a base has elevators or insist on staying in the main building which does.  It’s the reason that some people get angry when limited access forces them off of their scooter, in great pain, while standers by watch and assume that the person is faking in the first place.

The presumption that a disability must come with a big obvious sign so that other people can identify them is part of the problem to making the world outside our homes accessible to everyone.  It isn’t the job of PWDs to make their conditions obvious to you or to explain themselves to the AB-TAB crowd, but it should be the responsibility of the public and society to make sure that PWDs can access the rest of the world, which is a step, for many, to independent living.