Tag Archives: pop culture

The Importance of Being Bellatrix Lestrange

Bellatrix Lestrange, as portrayed by Helena Bonham Carter, a pale woman with a mop of dark, thick curly hair lightly tinged with strands of grey, smirking devilishly in a black dress with white embroidery, pointing her wand at her own face.It is odd the way that The Guy and I have these conversations…or maybe it is a sign that we watch our Harry Potter movies too much, but one night while viewing HPatHBP for appoximately the nonillionth time I turned to him during the Unbreakable Vow scene at Spinner’s End, and began the following thought train (all quotes should be presumed to be “air quotes”):

Me: You know, all of Snape and Dumbledore’s plans would have been shot if anyone at all would have listened to Bellatrix.

The Guy: No kidding! She never trusted Snape. Look at how she taunts him!

Me: It’s because everyone dismisses her as just being “insane”, you know.

The Guy: Because she was in Azkaban, you know, and it has “driven her mad”, so she obviously doesn’t know what she is talking about.

Me: Obviously.

See, I am not in anyway advocating for Team Voldemort or something. There is a great discussion on racism that can be had about the antics of the Death Eaters (and the dynamics of having that point made from a primarily White PoV) in another post, but more interestingly to me right now in this particular post is that Bellatrix was completely right in her mistrust of Severus Snape and his position beside Lord Voldemort. Her feelings go much deeper than mere jealousy (but why shouldn’t she be jealous, since she alone stood proudly, unafraid of the consequences of supporting Voldemort when others did not?) to a practical mistrust of someone who seemed to benefit all to much from a convenient and literal get out of jail free card.

We know that Bellatrix was described as having a personality that bordered on displaying psychopathic tendencies* (from a lay perspective), in that she showed little to no conscience. We know that her cold and callousness was often played up if for no other reason than to reinforce that Bellatrix was someone who was a little unbalanced. Her pride in being a “pure blood” was over the top to a “normal” person, and we are to presume that no rational person would behave the way that she would. So, no rational person would honestly believe that anyone would dare betray the Dark Lord. She goads people with baby talk and laughs at inappropriate times which all adds to the image of the mentally unstable woman who just can’t be taken seriously, but is tolerated for whatever reasons (in Bellatrix’ case, it is more than likely her undeniable talent and power. Even Death Eaters can’t look that gift horse in the mouth, mental illness or no!).

I am not a doctor, nor anyone qualified to make medical opinions about the fictional personality of Bellatrix Lestrange, but I do know that often in real life people who have mental illness, to any degree, are in fact taken less seriously than those who do not. They are dismissed in everyday goings on, dismissed when it comes to their own medical care, told they shouldn’t have children, told they are not suitable parents if they do already, and when they leave the room you had best believe that people snicker that “poor crazy Bellatrix is raving again”… The importance of Bellatrix Lestrange is that she represents real people…real women who exist — whether intentional on the part of J.K. Rowling or no — who have valid concerns in the world, and who can not get their voices heard because their mental illness (or any disability) creates a barrier between what they say and what others are willing to hear.

So J.K. was free to write this character, whose madness and temper were often mirrored in her own cousin, Sirius Black (interesting, no?), who could go on and on at will about Severus and how he was not to be trusted, how he was really going to betray the Dark Lord. Severus was able to rest easy through her rantings, knowing full well that no one was going to believe her, that his triple agent status was going to remain unscathed, because, after all, who would ever believe a crazy person, right? Voldemort might have been better served had someone actually listened to her.

But no one did.

Interesting, that.

I mean, I guess it is a good thing, both for Harry himself, and for the sales of books five through seven or so and the corresponding movies, since the story might have stopped cold had any of that happened. Something to consider, I suppose.

Oh, how I do love discussing Harry Potter.

*These descriptions I take mostly from the Harry Potter wiki.

Photo: The Harry Potter wiki

Cross Posted at random babble…

Quick Hit — 4D Plexes

Movie poster from the Korean realease of Avatar, showing a white man on the left and his blue faced Avatar on the right, with fantasy creatures imposed in the bottom foreground. Bottom has Korean writing for title "Avatar".Our local theater in South Korea has one of the first and only 4D Plexes in the world (and it is currently showing Avatar, so I could possibly be entertained and annoyed and over-stimulated all at once! Whee!).

“The way the company finally cornered that elusive fourth dimension is by engaging all five senses: moving seats, wind, water sprinkling, lasers, and synthetic smells are all used in time with the movie.”

What are your thoughts/feelings on this so-called break through in the movie going experience? Does the thought of a moving seat and being accosted with sprinkling water and scent sound like an enhanced movie experience for you? Does it seem like it would just provide another barrier to your enjoyment?

Personally I picture myself using my popcorn bucket for something other than its intended purpose…

Have at it in comments.

Who Killed Civil Discourse? Evelyn Evelyn, Marginalization, and Internet Discussion

Hello. I am Annaham (yes, I have a name). I am the person who posted a critique of Evelyn Evelyn on this website, which kicked off something of an internet controversy. For those who’ve just joined us, I made a post about Amanda Palmer and Jason Webley’s side project Evelyn Evelyn, Lauredhel made another post soon after, and things got a little out-of-control, to say the least. Because my post was part of this whole storm of various substances — both gross and not — I feel some responsibility to share my reaction to what’s gone down thus far.

I’d like to take a moment to talk about some basic principles of anti-oppression activism and social justice work that intersect with the work we do here at FWD, as some very specific structural issues and contexts are absolutely relevant in this discussion. Often, marginalized people are encouraged and expected to be sensitive and accommodating to the attitudes and prejudices of the dominant culture and to those of less-marginalized (ie: more privileged) people. However, this sensitivity and accommodation usually does not run both ways. Marginalized people, if they criticize something that (for example) leaves them out or makes them feel awful, are often told that they are being overly sensitive or overemotional, that they just misunderstand intent, that they are exaggerating, or that their tone is not polite enough. They are then expected to modify their behavior — and their self-expression —  to fit with the norms and values of those who are more privileged.

What the less-privileged have to say is usually not accorded much importance, critical thought, or respect, and yet they are supposed to prioritize, be patient with, and generally assign more importance to views, values and norms that are not their own. People in marginalized communities are often expected to educate the more privileged majority. They may be expected to patiently explain basic concepts, sometimes repeatedly. And if those with more privilege decide that they do not agree (with the less-privileged group’s tone, focus, or any number of other things other than the actual argument that is being made), those with less privilege are told, with varying degrees of subtlety, to shut the fuck up.

All the while, the perspectives, attitudes, norms and values of those with more privilege are made neutral. The power dynamics are rendered invisible, because that’s just the way things are, so there’s no point in trying to change any of it. Why are you so angry?  You’re just looking for things to get mad about. You just like being offended. Why can’t you focus on other/more important things? It wasn’t meant that way. You need to hold your tongue until you’ve done x, y and z. Quit taking it personally. You’re ruining everyone’s good time. Stop trying to make everyone pay attention to your pet issue, because it doesn’t affect anyone other than you. Your demands are unreasonable. Stop complaining. Shut up.

And when things don’t go entirely smoothly (which happens often), those not in a position of privilege are often blamed for it: Well, what did you expect, using that tone? You’re the one who brought it up; you’re the one who rocked the boat.

Unfortunately, these tactics are extremely common when it comes folks’ objections against many sorts of media and pop culture critique and/or backlash against critical engagement with cultural works. In other words: These are not new patterns.

I am definitely not saying that everyone has to agree with the critiques that I and others have made regarding Evelyn Evelyn; I am not suggesting that ideological lockstep is a worthy end-goal. What I am saying is that the humanity of marginalized people — those who have traditionally been left out, and who are often on the receiving end of justifications for said exclusion(s) — is not up for debate. The humanity of the participants in this discussion — that of the creators/artists, fans, and those of us who have come forward with critiques — is similarly not up for debate. What I posted, and what I am posting here, was (and is) my take on the matter. I do not, nor do I want to, claim to speak for all PWDs, or all disabled feminists, or all fans of AfP and/or Jason Webley who are also disabled or feminists, or both. We all have our different takes on Evelyn Evelyn and how things have unfolded, and I think it is a good sign that so much discussion has come from this.

As I have stated here on FWD and elsewhere, I am a fan of AfP and have been for a number of years. Many of the people who have raised concerns about Evelyn Evelyn are fans, potential fans, or former fans (and there have been solid points raised by non-fans, too). Dreamwidth’s Anti-Oppression Linkspam community has, at present, four roundups collecting posts on the matter from around the web.  I suspect that many of us who have posted on the Evelyn Evelyn project with a critical eye are not raising these concerns simply to bug or irritate Amanda and Jason, or their fans. However, there are quite a few people who seem eager to dismiss those of us with legitimate concerns as “haters” who just don’t understand art. The hostile messages from “haters” that Amanda has received are not legitimate critiques. These are personal attacks, not arguments of substance.

I almost feel like it should go without saying that I do not support people making these attacks on Amanda, but just to make it very clear: I am very much against people using this controversy — and the complex issues raised — as a bandwagon upon which they can leap to make personal attacks and/or comments about Amanda’s personal life or who she is. Unfortunately for those of us who have been trying to bring attention to Evelyn Evelyn-related issues and seriously discuss them, the “haters” are distracting from these same issues (and are apparently effective at it). I have also heard that people are making threats of physical violence against Amanda. That is not okay. It is never, ever acceptable to make threats of violence against anyone, regardless of your disagreement. That is basic human decency. It is truly disheartening to me, and to the other FWD contributors, that some are using this very difficult situation as an excuse to make horrific threats. We fiercely condemn these attacks.

One of the comments I received was from someone who, as far as I can tell, thought that my post seemed “insincere,” with a bonus implication that I was and am making other PWDs look bad “in the eyes of the abled.” Comments of this sort are often aimed at members of marginalized groups who are expected speak for everyone in their group when confronted; it basically boils down to “You are making other [disabled people] look bad.” I have to wonder why this same thing was not said to the AfP fans who found it necessary to show up here to derail, break out tone arguments,  tell me and my fellow contributors that we are crazy and/or should shut up, and who dismissed us on Twitter as just bitching about the project. It’s interesting, and rather telling, that some fans have used these tactics against me, my fellow FWD contributors, and other people who have critiqued the project, but could not (or did not want to) step back and consider their own behavior.

We were, in various other places around the web, called “retarded,” “angry bloggers,” had the legitimacy of our contributors’ disabilities questioned, and (trigger warning) threatened with rape (link goes to a screencap of a comment left on Amanda’s blog) — among many, many other things. In the comments thread to my original post, I was told that I need to focus on more important issues, that I was blowing things out of proportion, that I was censoring people and/or trampling on their free speech rights by laying out guidelines that specifically told potential commenters  to not leave derailing comments,  and that intent should excuse offensiveness. Eventually, I lost my patience.

There were also quite a few personal-attack comments left in the moderation queue; for obvious reasons, these were not published. These attacking comments were a significant part of why I closed comments on the post, though I did not explain that in my final comment. My decision was not about “censoring” what anyone had to say, or infringing upon “free speech” rights (this is a private website — one that has contributors, commenters and readers who are not only from the U.S.), or only about the fact that I lost my patience after having explained certain concepts over and over again; I and my fellow contributors simply could not deal with the personal attacks, threats, and violent language being left in the mod queue anymore.

Here is just a sampling of some of these unpublished comments from the mod queue (possible trigger warning):

“What’s the matter with you?”

“cant handle it? then just fucking die!”

“fuck u die slow nigga!”

“ONOEZ SOMEONE WANTED TO SMACK SOMEONE SUCH VIOLENCE!!! Typical retarded comment on an idiotic, stupid, moronic, weak, and lame blog. Fucking oversensitive twits.”

I think there is something analogous here to some of the more hateful comments that Amanda received on Twitter and elsewhere, but that is a bit of a tangent.

Going through the mod queue for that post was not an experience that I would want anyone to have. I could talk about the fact that it got to the point where it exhausted me to look at the comments; about the extreme anxiety and emotional hurt I felt while reading some of the comments that attacked me as an individual and/or questioned my mental health status; about how it feels to notice that your physical pain level — already there as a result of a chronic pain condition — goes up a few notches as you read criticism(s) directed not at your argument, but at you. I have a feeling that were I to discuss this in depth, some would likely construe it as “ANGRY BLOGGER BLAMES AMANDA PALMER FANS FOR HER OWN PAIN” or accuse me of using my disability as an excuse for being “too sensitive.” I get more than enough of that outside of the blogosphere.

I need a break from having attempted to be civil and polite and explain very basic concepts to a select few people who have no interest in substantially engaging with me or with others who have raised concerns about Evelyn Evelyn.  Simply put, I need some time to recharge my politeness batteries, as well as my hope that some people — and I include many of Amanda’s fans in this category  — do want to listen, learn and discuss without derailing or attacking. I wish I could address every critique that’s come our way, but I am pretty worn out (and I suspect that many of you — disabled and not — know the feeling).

In the interest of full disclosure, I should mention that Jason and I have been communicating via e-mail — he emailed me shortly after my other post went live — and discussing many of these issues in more detail; for that, and for his willingness to engage, listen, and consider the critiques that have come up, I thank him.

I wish Amanda and Jason success with their endeavors; I do not wish to shut either of them up or, worse, endorse that Evelyn Evelyn not go forward at all. There is, as I have said, quite a bit of difference between critiquing a portion of someone’s work and wanting to shut them up or silence them; I have aimed for the former. I ask, however, that they engage critically with and take seriously the numerous points that have been brought up, both about (trigger warnings apply to the first two links) specific aspects of the project and the response to critiques so far. Taking on such huge issues will doubtlessly be a difficult and ongoing process. Of course, Amanda and Jason will probably interpret all of this in different ways. What happens next does not have to be “perfect” — nor 100% Annaham-approved (because that would be unrealistic and silly), but it would be fantastic for these two very talented musicians and performers to bridge the gaps between their good intentions and what actually shows up onstage and on the album.

What are the ultimate lessons here? What can people on all sides of this discussion take away? Right now, I don’t know, and for the moment, that is okay with me. I still believe that better things are possible. I refuse to give up that hope.

[Special thanks to meloukhia for ou’s help in putting together links and other material for this post.]

Please read and abide by our comments policy.

Evelyn Evelyn: Ableism Ableism?

Let’s get something out of the way: I say this out of love and respect. I say this as a fellow artist (albeit an unknown one). I also very much doubt that the people involved in this project have created it with any bad intentions. That said, however, intentions don’t equal a free pass for an end result, particularly if the end result is problematic.

I am conflicted, to put it mildly, about this latest project in which singer and pianist Amanda Palmer has involved herself (full disclosure: I am a fan of Palmer’s music). For those who need a refresher, she and fellow musician Jason Webley are performing together as Evelyn Evelyn, a fictional set of conjoined twins and former circus performers with an elaborate past who reside in (of course!) Walla Walla, Washington. The group’s upcoming self-titled album seems to be getting quite a bit of press in the indie world. Part of the press release reads as follows:

Rather than being limited by their unique physical condition, the Evelyn sisters prove that two heads are indeed better than one. Audiences will marvel at the twins as they dexterously perform their original compositions on piano, guitar, ukulele, accordion and even drums.

Ah, yes! It’s the “overcoming disability” trope, with a heaping side of totally unexpected and not-at-all-stereotypical circus-freakdom. Might Evelyn Evelyn be musical Supercrips?

And then:

Unsatisfied with the grind of circus life, at the age of nineteen the twins decided to explore a solo career. It was then that they were discovered by Amanda Palmer and Jason Webley, who heard the twins’ music on MySpace. Webley and Palmer encouraged the twins and offered to help them record a proper album.

The album will be accompanied by a full US and European tour and – later this year – a graphic novel about the twins’ inspiring life, illustrated by Cynthia von Buhler and published by Dark Horse Press.

The stereotypes about disability here are pretty well-worn: according to this (fictional) backstory, the twins were “discovered by” and need “help” from two abled individuals, Palmer and Webley, to realize their musical potential. Add to this their “inspiring” origin story — which is fodder for a graphic novel tie-in — and you’ve got yourself one hell of a three-ring circus of disability stereotypes.

Thus far, it looks like Evelyn Evelyn’s primary aim is to be “inspiring” to abled folks (and to be a bit of creative fun for Palmer and Webley). The three songs currently available on MySpace only serve to continue this trope; “A Campaign of Shock and Awe,” in particular, casts the twins as “the 8th wonder of the natural world.” Good to know that even fictional people with disabilities are not exempt from being cast as “wonders” from which non-disabled people can draw inspiration and “marvel” at. Sound familiar? Add in a dash of hipster ableism and you’ve got something that looks positively transgressive, especially in comparison to the rest of the music industry.

Unfortunately, Evelyn Evelyn seems like a project that is far from actually being transgressive, even given the initial appearance of said transgression (because what’s more shocking and weird than conjoined twins, at least according to abled culture?). The project, as far as I can tell, makes no reference to the ways in which actual people with disabilities are treated in Western culture; this probably seems like a tall order for any musical project, but there is a chasm of difference between at least acknowledging that there are people like this (in this case, conjoined twins) who do exist and that they probably are affected by ableism, and outright appropriation of this uniqueness in the name of art. Certainly, Evelyn Evelyn is fictional, and while Palmer and Webley are not required to make any sort of political statement, the seeming lack of awareness that there are actual conjoined twins and that they do not only exist for abled artists’ dressing-up-and-performing purposes is rather troubling.

The larger cultural context of treatment of real people with disabilities, too, is conveniently forgotten (see the lyrics to “A Campaign of Shock and Awe”); the twins seem to exist in a world that is completely free of ableism (in forms subtle and not), harsh social treatment of PWDs by abled people, and pernicious, damaging stereotypes. This is particularly disappointing given that Palmer has written some great, quite un-stereotypical songs about PWDs and people with mental health conditions (one of which I wrote about in a blog post for Bitch Magazine).

I am a person with disabilities. I am a music fan. I am (sort of) an artist — one who mostly does graphic work about the disabilities of non-fictional people. However, Evelyn Evelyn, as a multimedia project, seems designed to keep people like me — real people with disabilities — out; this is not a new thing, considering the attitudes that folks in our culture hold about people with disabilities and their acceptable social roles. There are other, more creative ways to portray people with disabilities that don’t rely on facile stereotypes or on the ways that PWDs are already represented in popular culture. Representing Evelyn Evelyn as variously inspiring, freakish, weird and a “wonder” just reinforces existing stereotypes about PWDs, while ignoring the cultural context in which the project was conceived; while Evelyn Evelyn may be artistic and, at first glance, “different,” the attitudes beneath the project’s surface seem awfully mainstream.

Special commenting note: First-time commenters, please read and abide by our comments policy. Kindly refrain from commenting if your argument consists of any of the following: “You just don’t get it,” “You do not understand art,” “You are taking this too seriously,” “Evelyn Evelyn is not real, therefore the stereotypes about disability examined here do not matter,”  “Justify your experience and/or disability to me, NOW,” “Why are you criticizing Amanda Palmer? She is brilliant; how dare you!” I am familiar with all of these arguments — please be aware that they will probably not add anything to the discussion because they are classic derailing tactics, and I will most likely decline to publish comments that utilize the above arguments.

Similarly, this is not a thread in which to discuss how much you like or dislike Palmer or Webley’s music in general; comments to the effect of “Her/his music sucks and here’s why” will not be allowed, as they are also derailing.

Do you REALLY trust women?

For the purposes of this post, I would like to remind everyone that the range of disability includes people who are mentally ill, paralyzed, Blind, Deaf, permanently injured, autistic, physically disfigured, with compromised immune systems or disordered speech or chronic pain or cognitive impairments, and many, many others. Disabilities may be fatal or not, may be degenerative or not, may be apparent or not. Being painful, fatal, stigmatized, or poorly understood does not mean that life is not worth living, and I will not tolerate any attempts to enforce a hierarchy of disability; there is no category of Especially Bad Disability that destroys any chance of worthy life.

A blue-purple sunburst in the background, white letters reading "TRUST WOMEN: Blog for Choice Day 2010"

Blog for Choice Day 2010

Have you ever participated in the stigmatizing of pregnncy, childbirth and childrearing when the parent, child, or both have, or could have or obtain, disabilities?

Have you ever participated in the cultural narratives that say:

  • Older women should not have children because their children are more likely to have a disability
  • Women with disabilities should avoid having children because their children might also have a disability, and it would be wrong, unjust and cruel to give birth to a child that is not in perfect health
  • Women with disabilities should avoid having children because only temporarily-abled women can properly parent a child, or being a mother with a disability would somehow deprive the child of necessary experiences or put a burden on the child
  • Women with disabilities should avoid having children because they are more likely to be poor and need public assistance, and their children would also be more likely to use public assistance in the future, resulting in a drain on temporarily-abled taxpayers
  • Women with disabilities would be selfish to have children, and to do so would contribute to environmental destruction, economic decline, and even degradation of the human species, and they and their children would be less valuable members of society because of their lack of perfect health
  • It would be a tragedy to have a disabled child, disabled children are less desirable than temporarily-abled children
  • Life with a disability is inherently worse than life without one; life without a disability is the baseline by which all life should be measured, so of course to have a disability would be a negative and would make a person’s life worse
  • Disabled children are a burden on their temporarily abled parents, more so than any other child would be, and this is because of the child’s disability rather than because of the lack of support and affirmation throughout all levels of society for PWD and their loved ones
  • Of course it is more desirable for a child to be perfectly healthy than to have some sort of medical imperfection, and those medical imperfections are a big stress and hassle on the temporarily abled people around the child, and there is something wrong with the child for failing to meet an impossible standard of perfection
  • Health and ability are objective concepts and our current cultural wisdom on them are completely right and the medical industry that puts them forth is infallible; our ideas about health and ability are the only right way to look at things and can be universally applied
  • To violate those cultural ideas means that you are inherently flawed
  • The answer to all of this is to go to excessive lengths to avoid ever having, or being around someone who has, health problems, up to and including letting the least healthy die off or be terminated before they can live at all

You know what? I’ll bet you’ve all done it. Even the most radical disability activist has participated in some of these cultural tropes at some point in their lives.

But I’ll bet the vast majority of people “blogging for choice” would never think of disability as related to “choice” issues, and if they did, it would be for the right of temporarily-abled higher-class white Western women to terminate a pregnancy that has a more-than-minute chance of resulting in a less-than-perfectly-healthy child.

This is why the “choice” framework fails. It fails all of us, but it particularly fails those of us who fail to meet society’s idea of the optimal person: the pale, thin, beautiful, and financially comfortable picture of perfect health. The person who never relies on others (no!), is “self-sufficient,” and isn’t likely to end up a burden on the important people.

The rest of us can “choose” to stop existing.

Do you really trust women? Or are you perfectly willing to override their choices if you feel they threaten your comfortable position in society?

And you expect me to think you’re any better for my rights and needs than pro-lifers, why?

(Cross-posted at three rivers fog.)

Edit, Saturday 1/23: I am being very strict in moderating this thread. The primary response from people who do not identify as disabled seems to be “Well, I respect your choice, even though it is clearly cruel and bad/makes me ‘uncomfortable’/is the ‘wrong’ choice.” That is exactly the opposite of what this post is saying. If that is what you got out of this post, you have a LOT of stepping back, listening, and learning left to do.

I’m not asking you to be nice enough not to forcibly prevent us from ever having children, or anyone from ever having disabled children, even as you eagerly stigmatized disabled motherhood/childhood; I am asking you to genuinely examine the deep-rooted prejudices you have been taught and challenge your thinking on childbearing/rearing and disability. I am asking you to question why you have these ideas about disability, and whether they are appropriate to hold as a person committed to social justice. Including for women.

Because, here’s a hint: a lot of us women have disabilities, and all of us were children once, and some of us will have children of our own. And we are still women. Are you really protecting women’s freedom? Or are you merely preserving the temporarily-abled supremacist structure of society, with temporarily abled women as a convenient proxy?

I ask you to consider these prompts, to attempt to truly challenge your assumptions about disability and parenthood. If you aren’t willing to do that, please don’t drop in to explain why disabled women are “Doin It Rong.” Check your privilege. Thanks.

Does Outright Speculation Make This Disabled Feminist Angry?

Answer: Yes.

Let’s talk about this piece-of-crap article recently published on that oh-so-“liberal” news n’ culture site, Salon.com. I’m prefacing this post with a warning for ableist language and concepts on the part of the article’s author, Rahul K. Parikh, M.D. The article begins as follows:

There was a time when a celebrity’s sudden death almost invariably meant illegal drugs…[a]nd so it seems with Brittany Murphy, the bubbly and bright actress who died of cardiac arrest at 32.

Yes, it seems. Point is, we don’t know much yet. There are other health-related issues or conditions that can lead to cardiac arrest, but is this acknowledged? Of course not! Parikh continues:

The coroner’s notes allegedly claim a pharmacopia in Murphy’s bathroom cabinet: Topamax (for seizures or migraines), methylprednisolone (a steroid), fluoxetine (an antidepressant), Klonopin (for anxiety), carbamazepine (for seizures or bipolar disorder), Ativan (for anxiety), Vicoprofen (pain reliever), propranolol (for hypertension, migraines or anxiety), Biaxin (an antibiotic), and hydrocodone (a narcotic pain reliever). Gone are the days of shameful crack pipes and empty gin bottles.

OH MY GOD, EVERYBODY PANIC.

Murphy’s medications, like those of [Heath] Ledger and Anna Nicole Smith, are on the shelves of your local drugstore, available with a simple trip to the doctor — or doctors — whom you merely need to convince that you need the stuff. Did one doctor prescribe her those meds? Did 10? We don’t yet know. But as a doctor myself, I just kept wondering (and not for the first time): What if doctors were more like librarians? Would Brittany Murphy still be alive?

Cue scary music! THE DANGER IS ON THE SHELVES OF YOUR LOCAL DRUGSTORE. Nevermind that people with chronic pain conditions and disabilities have to jump through numerous, often ridiculous hoops just to get, say, a month’s supply of medications that help them function and/or live life to the fullest extent possible. As one of these people, I am of the opinion that Parikh is being rather disingenuous here; these drugs, at least for us “average” folk with chronic pain issues, are usually not easy to obtain.

After nattering about how the medical field should follow the example of public libraries when it comes to monitoring people and their books meds, he continues:

One of the many negative consequences of such fragmentation is how ridiculously easy it can be to get drugs. Most doctors know patients who have desperately angled to get a prescription they don’t need, usually highly addictive pain medicines like Percocet or OxyContin. This is what we call “doctor shopping,” hopping from one physician to the next until they find someone willing to write a script. When the supply dries up, they go to another doctor, and then another. One 53-year-old man in California visited 183 doctors and 47 pharmacies in one year to support his addiction to painkillers.

Hey, nice use of anecdata there! What on earth does one 53 year-old guy in California have to do with Brittany Murphy’s situation? As for “most doctors” knowing a patient who has “angled” for meds they “don’t need” (who makes that judgement, I wonder?): cry me a goddamn river. The endless Helen Lovejoy-gasping about ADDICTION!!1 in fact makes it incredibly hard for some of us who need these medications to obtain them, and no amount of 1984-esque War is Peace anecdata–from someone, no less, who is supposed to help people in pain as part of his chosen occupation–is going to change that.

In short, the experiences of people with chronic pain are going be different than those of an able-bodied doctor, but nowhere is this acknowledged in this article–nor is it mentioned in many larger conversations about  painkillers and (possible) ADDICTION!!11.

Most of us who need these medications do not have the energy to doctor-shop. I do not wish to deny that painkiller addiction is a serious problem; it is, for some. Sadly, these sorts of “conversations” on the specter of supposedly widespread PAINKILLER ADDICTION!!!1–much like those focusing on the OBESITY CRISIS!!11–tend to focus entirely too much attention on extreme cases and anecdata, leaving out those who need these medications for legitimate medical reasons, and, I might add, some of whom spend a great portion of time proving said legitimacy in order to show that they are not addicts or doctor-shoppers.

But if “preventing” ADDICTION!11 in able-bodied people via endless hand-wringing about who “really” needs these drugs versus who doesn’t is the number one priority here, that is a problem. Yet again, the needs of those who are judged by society as most “important” or productive or fitting into able-bodied society are taken seriously, and the needs of those who do not fit this mold–because they need painkillers for actual pain and are therefore bad/unproductive/just a bunch of whiners–are ignored, or worse, actively shamed and castigated for things or circumstances that they cannot control.

And, as OuyangDan pointed out so eloquently on this very blog, there are a lot of things that we don’t know about Brittany Murphy’s death. Using her death as a poorly-researched, almost totally speculative “example” of the dangers of painkiller ADDICTION!!11 is not only tasteless, but it distracts from how ridiculously the concerns about painkillers, “legitimacy” and the specter of addiction are often framed by (mostly privileged) people who do not deal with these things in their daily lives.

Less infuriating: Many of the commenters seem to agree that this article and its “speculation” went too far, which is unusual for Salon commenters, as most of them tend to exemplify the worst of privileged white “liberalism” on a regular basis (as you would expect, this includes loads of abled privilege and the anecdata to back up their uninformed opinions).

Talking down disability while talking down to young people

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]

Some Thoughts on The Time Traveler’s Wife

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.

Recommended Reading for November 18

Should Disabled Characters Only Be Played By Disabled Actors?

I honestly think this is a difficult call. On the one hand the whole point of acting is to take on a personality of someone that isn’t you, hence the point of having straight actors play characters who are gay and vice versa. But there seems to be a catch 22 when it comes to actors who have disabilities. Blind actors are only allowed to play blind characters, which begs the question are they really acting? Obviously they’re not playing themselves, the character likely has personality differences, but why should they be restricted to roles where the audience knows they’re blind? This restriction says to me that directors can’t conceive a blind character playing someone who is sighted and so they don’t allow it, but really they are only restricting the number of roles that blind actors can audition for. So in that case maybe we should be upset that Helen Keller isn’t being played by a young actress who is deaf and/or blind.

The Intel Reader Photographs Text and reads it back to you

Intel’s Reader for the visually impaired isn’t a concept; it goes on sale today. Using an Atom processor, 5-megapixel camera, and Intel’s Linux-based Moblin OS, it turns book pages into digital text and MP3s…then reads aloud in a synthesized voice.

Brand it on the tip of your tongue

no matter how much you are learning, no matter how much power/money/influence you carry, no matter how much you always know the right things to say,

my body is not for you to exam, conquer, or casually observe
as if the strands of my hair were nothing more than pages of a magazine

the creator did not craft these hands, lungs, feet of mine so you can feel good about yourself. my issues are not for you to solve.

who said you could analyze me? i am not a hobby, a project, a case study

Are High Tech Prosthetics Fair?

This past week, another scientific study on running raised the issue of athletes with lower-leg amputations who use high-tech prosthetics having a bionic advantage in contests against ordinary competitors. Increasingly sophisticated innovations — like the carbon-fiber Cheetah Flex-Foot — appear to give amputee sprinters a technological edge in medium-distance races like the 400 meters. Isn’t opening able-bodied competitions to disabled athletes like the double-amputee Oscar Pistorius, fitted out with futuristic J-shaped blade extensions, just political correctness run amok?

ADHD website tells women they’re annoying

Annelise M. sent us a link to a relationships advice slide show at ADDITUDE, a website for people with Attention Deficit Disorder and other learning disabilities. The slide show title is “7 Tips for Better Communication in Your ADHD Relationships.” However, even though men are diagnosed with ADD and ADHD two to four times more often than women, the subtitle makes it clear that the advice is for women only and the text specifies “ADD women” and the “partner” or “spouse” is always a “him” (so also heterosexist). The advice was gender-neutral, but the authors decided to go with gender stereotypes instead.

Recommended Reading for November 13

Mental Health and Promiscuity

However, even in this environment there is one area that has always troubled me and that revolves around the concept of promiscuity as diagnositic criteria.

My first and biggest problem with this is that I have NEVER heard this brought up as a symptom of mental illness when discussing a male. It is always something that is brought up about a female. I can’t help but assume that this is linked to the belief that “excessive” sexual activity is normal for a man and not a symptom of mental illness while no “healthy” woman would engage in or enjoy casual or alternative styles of sex. I also think it is linked to the belief that women are the only ones that have sex with other people due to low self esteem or possibly in a reckless manner because they have some self-destruct tendencies. See, sex is damaging to women, they can’t just enjoy casual encounters or engage in sex purely for self-satisfaction: they must be wounded in some way or they must be wrongly searching for the intimacy they so desire.

Reasonable Accommodation

I find myself caught between disabilities.

One of my most promising paths forward health-wise right now is finding a low-impact, non-repetitive form of exercise. Since I have done yoga in the past, I have been searching for a yoga studio. But since I’m in the western suburbs of St. Louis… there just isn’t much here. The most promising place, that offers classes that fit into my schedule, that is likely to be understanding and accomodating of my back issues, is Bikram.

Now I did Bikram a few years ago and loved it – unfortunately, over the course of a couple of months the humidity in the room (Bikram is “hot” yoga, done in a room that’s about 90 degrees) started making my hearing aids go wonky, so I stopped.

You Can Make Fun Of Us But You Can’t Give Us A Chance

The character was dressed in a blue latex suit that covered his head, and he was constantly babbling like an idiot and drooling on himself. I admit that I found the Handiman skits to be hilarious when when they first premiered. The disabled community had been non-existent in Hollywood up until then, and it continues to be non-existent today, so it was good to see some representation, and me not knowing how much of a negative image it was at the time, appreciated the recognition.

I was in my junior year in high school when Handiman made his debut. Ever since I was mainstreamed back in the fifth grade, I have always caught hell because of my disability. I remember being teased many a-day throughout grade school, high school and even college. Handiman perpetuated the stereotypes that people had about people with disabilities. Even to this day, the techniques have changed, but I pretty much know when people are trying to belittle me. Children aren’t as cunning or crafty to hide their emotions, so they would usually laugh or make “retarded-stupid” comments about me.

The Usefulness Factor

Sometimes you can maintain a career from your own home, such as on the computer or as a consultant on the phone. Sometimes you just need to stop and re-think the whole idea of being useful. The question of “why am I here?” seems to become magnified when you become confined to a small physical space with others doing all the things you used to do for yourself.

But that does not mean you have become useless. It is very easy to fall into the trap of believing that, especially when people say things like, “it must be so nice to be home all the time and do nothing!” It is not particularly nice to have no impressive answer when people ask what you do all day, but if you are able to ignore that and realize that everyone is on this earth for a reason, you are on your way to finding a new sense of purpose. Maybe not a financial one, but perhaps a spiritual one, which is even more important.

In the news:
Francesca Martinez: A Wobbly Girl Battles Against The Last Taboo [Although I disagree with the idea that disability is the “last taboo”]

Francesca Martinez’s victim is squirming. Trapped under the scrutiny of the comedian and fellow members of the audience at her show in Edinburgh, he is clearly wishing for the proverbial hole to open up. “What are you bad at?” asks Martinez. “Football,” comes the sheepish reply. “Were you born like that?” she enquires, head tilted in sympathy, “Couldn’t your mum have had a test when she was pregnant?” Turning to the man’s girlfriend, she simpers: “You are so brave. Well done… Does it mean he can’t have sex?”

Martinez’s humour bears a political sting. As one of a tiny number of disabled performers who have made it into the mainstream, she is not about to waste opportunities to ram home a message. Born with cerebral palsy, the 31-year-old refuses to accept the label of her condition, preferring to describe herself as “wobbly”.