Tag Archives: disability in fiction

Book Review: Lasting Treasures by Julie Ellis

This piece contains lots of spoilers.

I wanted to love this book, I really did. I have enjoyed the couple of Julie Ellis novels I’ve read, but this one just tipped the charming/not happening scale a bit far. It has a really strong heroine in Vicky, who escapes the Russian pogroms to build a new life in America, trying to negotiate a difficult family situation and life as a prominent businesswoman. But there are lots of issues in this book that really grated, for example, every time a black servant is given an order, Ellis always points out how they were delighted to do it.

I’d just like to focus on the disability issues for now, though. There are many, not least with the disability-as-punishment trope cropping up at the end when the antagonist of the piece, Vicky’s son, has a stroke and is paralysed. He’s then housed in the cottage in which his mentally ill father shot himself. The very same cottage in which he kept Vicky while pretending she had a mental illness because he didn’t like the direction in which his mother was taking the company. Yep, it’s a bit of an intense novel.

But what I really want to talk about is the characterisation of Anita Roberts. Anita is married to Mark, a man Vicky falls in love with. So, naturally, she has to be a deceptive, evil shrew because that is the way “the other woman” gets sympathy in romance fiction. Except, she’s a wheelchair user, so it gets a lot more… interesting.

At first, Anita is set up as a martyr, the victim of a tragic accident who is doted on by her charming husband. They are a ‘special couple,’ Vicky is given to understand, and Anita is the darling of their social circle. As it turns out, she’s shrewd and conniving. She uses the excuse of the accident to deny her husband sex, even though the doctors said that they could have an ‘almost normal sex life’! It turns out that Anita never really wanted sex before the accident either, and now her horrible cruelty of not wanting sex has been unleashed! How terrible! It couldn’t possibly be the case that Anita doesn’t owe Marc sex, and she has become confident enough in herself to not engage with a sexual life she doesn’t really want. No, indeed. It is all about Marc’s pain and setting up his affair with Vicky. Anita’s not wanting sex gets to be the strange part, gets to be part of her evil scheme against poor Marc.

So, we’ve got the good crip who turns out to be hiding a deeply bitter and nasty nature. That’s old hat. But it was quite something to see that set up with a gendered aspect, too. Anita’s out to disparage Marc’s achievements and interests constantly, and she forces him to do ‘whatever she asks’ because otherwise he’s a terrible husband to his tragically beautiful and “damaged” wife. I suggest we identify a new trope, the Bad Shrewish Crip. The perfect mix of misogyny and ableism, out now at a bookstore near you.

But I really start to grit my teeth when we bring Anita’s Jewishness into it, because she perfectly fits the JAP stereotype. The Jewish American Princess is held to be a nagging, high maintenance woman with expensive taste and no sense of how irritating she is. And Anita is a JAP all over: she pokes fun at Vicky for having been a maid, loves designer clothing, and ends up forcing her husband to move to London as it is the only ‘civilised’ city on Earth. She’s simply set up as the most horrible conglomeration of disability, gender and racial/ethnic/cultural/religion stereotyping I have encountered in quite some time. The Bad Shrewish Jewish Crip, maybe?

So, in short: wanted to like it, feel kind of bad saying this because I like the author, but for goodness’ sake, this was one of the more frustrating reads of my year, and that is really saying something.

Recommended reading for May 11, 2010

sqbr at Poking at Thorns (with gloves on): Disability in Speculative Fiction: Monsters, mutants and muggles

Fiction reflects social attitudes, and the social attitudes to disabled people tend to suck. Disabled people are presented as scary, pathetic, exotic, demanding, laughable, etc. But some tropes are popular/unique to SF.

It’s not all bad: speculative fiction allows for powerful allegory, and can also make very interesting explorations/extrapolations of future attitudes/experiences of disability.

Jamer Hunt (Fast Company magazine): Our Bodies, Our Quantified Selves

The data generated by this micro-physics of the everyday has the potential to create unprecedented, massive databases available for projects from a dizzying array of fields. Imagine what researchers studying disease epidemiology might do with this information, or anthropologists exploring changing social patterns within the digital proletariat.

Courtney at From Austin to A&M: Cosplay, race, ability and gender; or, who gets to dress up as whom?

Doing cosplay as a femme!Doctor (or a black Doctor, or a visibly disabled Doctor, etc.) is part necessity (as in, I am in a lady-body, so if I want to cosplay as the Doctor, he would have to be a lady-body-Doctor, like a person in a wheelchair would have to be a wheelchair-user Doctor, or a black person would have to be a black Doctor). But it’s also a way for fans to see themselves in the Doctor, as the unquestioned protagonist of the show. Doctor Who fans can say all they like that DW is progressive enough in its way, but it’s still dated by its insistence that the main character be a white British man.

Lisa Sanders (NYT Magazine): Diagnosis — Pregnant and Pained

She didn’t have a fever, but the racking cough made her body ache all over. Her husband said it sounded as if she were coughing up a lung. Her OB said it was probably a virus. Whatever it was, it didn’t go away.

Switchin’ to Glide: “Independent Women”: Privileged Feminist Ideologies and Ableism

Independence or the pursuit thereof is a pursuit of privilege; the less that one has to depend on networks and relationships the more “successful” that person is. This is a profoundly ableist notion, in the sense that it constructs any sort of dependency as an obstacle to “success,” and because of the way our society is structured, people who are disabled are neccessarily dependent on various support systems.

Quoted: David Levithan in ‘Will Grayson, Will Grayson’ on ‘Mental Health Days’

i think the idea of a ‘mental health day’ is something completely invented by people who  have no clue what it’s like to have bad mental health. the idea that your mind can be aired out in twenty-four hours is kind of like saying heart disease can be cured if you eat the right breakfast cereal. mental health days only exist for people who have the luxury of saying ‘i don’t want to deal with things today’ and then can take the whole day off, while the rest of us are stuck fighting the fights we always fight, with no one really caring one way or the other…

One of the eponymous Will Graysons in Will Grayson, Will Grayson says this when he is trying to articulate how he feels about the concept of ‘mental health days.’ You can read my review of Will Grayson, Will Grayson at this ain’t livin’ if you’re interested in seeing more quotes from the book and reading my thoughts on it. (And feel free to discuss it here or there!)

I’m Not Supernatural, I’m Disabled

(This post does not contain plot specific spoilers, beyond a very broad overview of the concept behind the Sookie Stackhouse novels and the characterization of Sookie Stackhouse.)

I’ve loved the Sookie Stackhouse novels ever since a friend put one of them into my hot little hands because, well, it was hot and I was far from home and I was fussing and I was totally overstimulated and I just wanted to go hide, and my friend kindly said “here, take my book and go hang out in the park for a few hours, we will grab you when you are ready.” And I wasn’t ready until I finished that book, and then I went and found some more, because I just loved them that much.

The Sookie Stackhouse novels, for those not familiar, feature a telepathic waitress living in Louisiana, in an alternate United States where vampires have “come out of the coffin” because they can survive on synthetic blood. As the series unfolds, we learn about all sorts of interesting supernatural folks or “Supes” as they’re called, and we follow the title character on a series of wild adventures. The books appealed so much to Alan Ball, creative genius behind Six Feet Under, that they inspired the hit HBO series True Blood.

They’re fluff. Let’s get that on the table right now. They are fluffy and silly and they are not meant to be deep and introspective. They’re mass market paperbacks, and that is what they are. They’ve got a healthy heaping of steamy sex scenes and racy double entendres, and sometimes the descriptions of Sookie’s wardrobe get a little boring, but, you know, they’re the kind of books which I read as brain candy, when I can’t focus on things, when I just want to escape for a while.

I value escapist literature, because I think it’s a necessary and great thing. The ability to be consumed by an alternate world helps me settle my brain, whether I’m having a tough day, or I’ve just been reading a lot of dense, heavy material and I feel like I’m filling with cobwebs.

And what I really like about the Sookie novels is the characterization of the main character. As discussed above, Sookie is telepathic, but in the books, she specifically identifies as disabled, repeatedly and clearly, and insists that she is not supernatural. Her self labeling is a really important part of the books for me, because it makes me identify with her, as a character. I like seeing someone like me as a heroine. (Uhm, I’m not telepathic, just in case you were wondering.)

Sookie is also, in many ways, a very feminist heroine; she’s strong, opinionated, she knows her own will, and she exerts it. She doesn’t appreciate being told what to do, she’s not afraid to tell people to mind their own business, and she very much exercises her bodily autonomy. I think that the books trip up sometimes; she’s not a perfect heroine, but she’s a better example than the leads in a lot of other books of this kind.

Telepathy actually has a bit of a history of being treated as a disability in fiction, because, well, there are a lot of things about it which are disabling. In books featuring worlds in which traits like telepathy are recognized and valued, it’s sometimes treated as a disabling trait because it’s hard to be inside people’s heads all the time. It can be stressful and grinding and it can expose you to ugly, scary things. And, of course, other characters may want to use characters with telepathy to accomplish their own goals, which has some parallels with our world, in which people with disabilities are used for learning experiences, as plucky little mascots, or as targets of abuse and torment. Characters with telepathy are also sometimes cast within the framework of neuroatypicality. Even when their power is valued, they are also feared, and they have trouble relating to other people because their brains work so very differently.

Sound familiar? It does to me.

In novels where magic and supernatural powers are not recognized by the world the characters inhabit, telepathy is often treated as mental illness, because other characters refuse to recognize what is going on. Telepathic characters may be hated and feared by others, and they’re institutionalized, medicated, and isolated because other characters view them as mentally ill. In the Sookie Stackhouse novels, we see that Sookie feels isolated from other people because of her telepathy; it’s a barrier to social interactions, it makes her feel like she can’t seek intimacy, even in cases where she can tell people about it and be believed (especially so, sometimes). These are both things which come up in a mental illness context, and in the context of neuroatypicality.

That’s why I love and connect with Sookie. She does not view herself as supernatural, even as other supernatural folks try to label her that way. She views herself as disabled, and she explicitly and clearly identifies that way. She struggles with many of the same things that I do, and I like that Charlaine Harris has managed to create a complex, fully realized, rich character with disabilities.

Yes, it DOES make a difference

(Cross-posted at three rivers fog.)

I wrote this yesterday in an extreme fog and do not have the spoons to rework and polish it. Apologies for the brainspill, but these days it’s the only option I have.

***

For background, see Ouyang Dan’s post on the problematic aspects of the TV show House. Don’t tell me that people realize this is fictional. Don’t tell me that people know how to maintain that separation. Some do. Many don’t. And they’re everywhere. At the bottom of the totem pole… and in positions of power over the very people they are prejudiced against.

***

I was called back to work two weeks ago. I work at a government office that provides certain assistance programs. (Once you go to work for one government agency, you realize there are a whole lot more of them than you ever thought before.) I really don’t want to go into it any more specifically than that.

It’s been very rough on me. Last winter, work was physically draining. I basically have two whole hours every day that I am awake and not at work, preparing for work, or traveling to and from work, and semi-conscious. Not only am I so physically exhausted that I go to bed three hours after work ends, I am so physically exhausted that my brain just cannot be pushed any further. I have trouble comprehending the blogs and news sites I normally read; writing is usually out of the question. Of course, we won’t even talk about anything more physical than that — even preparing a boxed dinner for myself is too difficult. My apartment is even more a mess than usual, because I don’t have the energy to pick up the clothes that I shed as soon as I get the front door shut, the mail and personal items that trail after me from the couch to the bedroom…

Unfortunately, so far this year, it hasn’t just been physically draining. I’ve been dealing with a sudden onset of severe migraines, and not the type of migraines I’ve had since childhood and have an intimate knowledge of — these are more classic migraines, the nausea, the aura and vision distortion, the intense pain and pressure behind the eyes… The pain is not as overwhelming as my normal migraines (where a twitch of the toe makes me want to scream or cry or at least moan, but the movement and force of emitting any noise at all would hurt even worse, so I just curl up and remain frozen in misery), but the experience is just as miserable because it block’s my brain’s ability to function, even to process the smallest of information. I’ve been having trouble writing six-digit numbers on the top of each application. And normally I work faster than the worker next to me, but the past two weeks she’s been cranking out work three times faster than me.

It’s frustrating. I’ve been doing everything in my capacity to do to fight these headaches off. Everything. And no, I don’t want any helpful suggestions. But regardless, even with all the desperate measures I have been taking, they persist.

On top of it all, my endometriosis has decided to flare up at the same time. So I get double nausea, extreme abdominal cramps, persistent pelvic pain and other symptoms.

I’ve been in a lot of pain.

I take a lot of medications. For pain. I take medications that have no effect on people who do not have a specific type of pain disorder. And I take medications that people who are not in pain popularly take to get high. (I do not, for the record, take anything to get high myself.) And I put up with a lot of shit to continue taking one of few medications that works and that enables me to work.

(I guess I could give it up and therefore be putting up with less shit. But then I’d, you know, not be able to work. And for so long as I have the option to be able to work, I’m taking it. Because I may not even have that option forever. Situations change, bodies change, and bodies change how they react to medications over time. I’m doing what is necessary for myself and my family at this point in our lives.)

So, at work today.

I sit on the far side of the first floor of our building, along with all the other people working in my particular program, the people working on another program, and a couple stray general clerks across from all of us. The other program’s supervisor and one of the other program’s workers (OPS/OPW hereafter) were talking about a certain case, a woman who was being denied medication and needed help obtaining it. This was before lunch, it was a general talk in a work context, that is how to get the problem solved.

My husband and I went home for lunch, as we do regularly, given that we live less than five minutes from our workplace. It takes half the lunch period but it is worth the spoons because it makes the workday so much more bearable — two four-hour chunks rather than one long nine-hour one. We sit around, watch The People’s Court reruns, eat our lunch and laugh at the cats who get in silly, hyper, meddling moods around that time.

I returned from lunch, feeling a lot better having had a break from the fluorescent lighting and ambient noise of the HVAC system. And a few minutes after I got back, sitting next to the OPS scanning documents into the computer system, OPW wandered back over and began talking again about the client from before.

The medication? Oxycontin. Her doctor has been prescribing it to her for over 15 years.

And the conversation? Went like this. (As typed soon after in an email to my husband, as close as I could get to what they actually said, given how stunned and hurt I was while it was happening.)

OPW: do you watch house?
OPS: no not really
OPW: well he has some sort of leg injury, but he takes that other one, what is it? vicodin
OPS: uh huh
OPW: and they sent him to rehab, and he just had to find something to occupy his mind so he wouldn’t think about it
OPS: yeah they get addicted so easy
OPW: and now they put him on regular pain killers and he’s doing just fine
OPS: yeah a lot of the time tylenol or advil works just as well, people just want the high
OPW: exactly, and their doctors prescribe it to them and they hand it out to family members…

And the conversation went on like this for a couple minutes, with the two of them walking back and forth fetching printed documents, attending to the scanning etc.

I just… I’m not terribly private about my condition. I don’t bring it up, but if it’s relevant I talk about it. I do try to avoid telling my coworkers that I take narcotic medications (as opposed to just “medications”) but I have gone over it specifically with HR as it can be a security issue in some agencies.

I was sitting right there. OPW sits on the other side of me, and had to walk around me to get to where OPS was at the scanner. I was sitting right there.

They were talking about me.

They weren’t thinking of me, of course. They’d never make that connection. I’m young and thin and pretty enough. They know I work hard. Most of my office loves the hell out of me.

But if I had spoken up — rather than sitting there holding my breath trying not to cry — how would that opinion change? Would they start seeing me as lazy, as slacking off? Would they whisper about me every time I went to the water fountain for a drink? What was I taking? What was I doing with it? Would they start taking certain behaviors as symptomatic of addiction? If I passed too well one day, appearing to be just fine (to them; I am good at covering up my pain) — would they take that as evidence that I couldn’t actually be in pain and couldn’t really need that medication? And if I didn’t pass well one day — especially these days, when I’ve been stopped more than one time as someone remarks on how deathly pale I am and asks if I’m OK and tells me to take a break — would they see that resulting, not from my pain, but from the supposed addiction?

They were talking about me. They didn’t even know it. But I am that person on that medication. Pushing through the pain to keep working.

The difference is, Dr. House is a character.

I’m real.

And that woman. These were the attitudes of the people who were helping her resolve an issue. As much as I wish otherwise, workers do have some degree of latitude in deciding how they are going to approach a case, and can apply the law in different ways for different people, even if it appears pretty strict on paper.

I am that woman.

I have been there. I am there. I have to deal with unsympathetic figures in obtaining my treatment. Doctors, nurses, office staff, pharmacists, insurance reps, welfare reps, other reps. I have issues I have to call to have resolved. I have that person on the other line who’s promising me on the one hand to resolve the issue — but on the other hand …? How can I ever know?

I don’t know what was going on in this woman’s life. I don’t know if she’s dependent (there is a difference). I don’t know if she would be better off on another course of therapy. Or whether she’s tried all those other courses and they’ve given her awful side effects or they’re contraindicated given her particular condition or they’re unavailable to her due to income or access. I don’t know.

Maybe she’s abusing. Maybe she’s handing it out on the street corner.

Maybe she’s just like me. Just one person trying to power through this world as best she can. And this is the best way she’s found to do it.

Guest Post: “There’s something wrong with Esther”: Disability, deception, and Orphan

Tera lives in the American Midwest with her mother, five cats, two
parakeets and several imaginary friends. She is neurologically
atypical, a lover of cartoons and scary movies (equally), asexual, and
a gamer dork. Her Pokemon army is probably more awesome than yours.

Tera regularly blogs at Sweet Perdition.

Orphan movie poster: A young girl with her hair in pig tails is pictured.  She is wearing an old-fashioned gingham-style dress.  Her eyes are hidden in shadow, and she has a menacing appearance.  Across the top, it reads There's Something Wrong With Esther.  Across the bottom, it reads Can You Keep A Secret?  The image is meant to be very disturbing. - Description Text by Anna.'

WARNING: Major spoilers for the movie Orphan, including the twist.

Let’s play a game:

A little girl–five years old, maybe six–rushes out of a building. The sign above it says: “School for the Deaf.” She hugs her mother, who greets her in American Sign Language (“Hello, Max!”) They sign cheerfully about Max’s day; at bedtime, Max wants her mother to read her a story. It’s a picture book about a child whose baby sister “went to Heaven” before coming home from the hospital. (Max’s baby sister, Jessica, also went to Heaven before coming home from the hospital; her mother doesn’t want to read this story, but Max insists). Story finished, Max removes her hearing aid, turns off the light, and goes to sleep.

Max’s sister, Esther, is nine years old; the family adopted her just recently. Esther says she is “different.” She’s from Russia, but speaks perfect English with a slight accent. She cuts her food perfectly–so perfectly that brother Danny thinks it is “weird.” At school she wears gorgeous, old-fashioned dresses when other girls are wearing jeans and tee-shirts. She paints like a gifted adult. While taking baths, she sings a song that’s way before her time: “That’s the story of, that’s the glory of looooove!” She understands the word “fuck” as more than just a naughty word that adults say sometimes (“That’s what grownups do. They fuck.”), expertly loads a gun, puts on a black dress and make-up and tries to seduce her adoptive father. (“What are you doing, Esther!?”)

What is Max’s impairment? What is Esther’s? And why can we recognize Max’s within five seconds of meeting her, while it takes us nearly two hours to learn–pardon the phrase–what is “wrong with” Esther?

Continue reading Guest Post: “There’s something wrong with Esther”: Disability, deception, and Orphan

Understanding and Your Experience

abby jean’s post, “How Do We Understand This Experience?,” spun my brain off on a tangent about how disability issues are framed in the media and pop culture. Specifically, I read her post and then picked up a book I was in the process of reading and I came across the line “I couldn’t breathe. My heart skipped a beat.” And I thought about the fact that the author was using this line to convey a sense of tension and shock, and probably didn’t mean it literally.

Because I actually have had the experience of being unable to breathe. Of having my heart skip a beat. And my experience of that situation certainly is not like the experience described in this book. The author was using the phrase to convey a sense of numbness in response to an overwhelming situation. As a reader who has been unable to breathe, though, I just found the line slightly puzzling, and very inappropriate for a description of what the character was experiencing, since she obviously could breathe and her heart was working, or she wouldn’t be able to take the course of action she embarks on right after that line.

Here’s the thing about your heart and lungs: They’re a critical part of you, but you don’t realize it until they aren’t working. You don’t realize how noisy they are until there’s a sudden silence. And you don’t realize how important they are until suddenly they aren’t there. Then, they become the most important thing in the world, your all-consuming focus, and your priority is dealing with it, not thinking about anything else happening around you. Until, of course, you lose consciousness.

What happens when you can’t breathe is that you panic. Your panic makes the situation even worse. You are most certainly not numb, you are fighting with every fiber of your being to find air. You want to rip your chest open and shovel air into it. You are gasping like a fish out of water. You can feel your airways stubbornly remaining closed despite the fact that you are pleading with them to open. There is bubbling and creaking and hissing. You start to feel lightheaded. A rush of adrenaline surges through you, depleting your body’s oxygen resources even more quickly. Spots appear in your vision.

If you’re lucky, your rescue inhaler works.

And when your heart skips a beat? It is terrifying. You are waiting and hoping that your heart will pick up at the next beat, that the rhythm will be normal again. If you’re lucky, it does. If you’re unlucky, a cascading series of reactions is going to happen to you, and you have to hope that the people around you will know what to do, and will do it right. And will do it fast. Because, if they don’t, you die.

Which is, you know, not the same thing as being shocked by an event and feeling momentarily thrown. At all. “I couldn’t breathe. My heart skipped a beat.” is a classical rhetorical tactic used in books all over the world; it’s a shorthand which people are supposed to understand because it’s so widely used, but, in fact, for people who have lived through that, it’s a pretty poor shorthand. Would it be possible for authors to perhaps come up with a more accurate depiction of the response to surprise, stress, tension, shock, horror, etc?