Category Archives: representations

The Importance of Being Bellatrix Lestrange

books, media and pop culture, mental health, representations, social attitudes, , , , , , , , , , ,

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…

Aware of what exactly?

media and pop culture, representations, work,

Cross-posted at Zero at the Bone and Feministe.

Well, it’s Disability Awareness Month in Indiana, USA. Sound Bend, IN, network WSBT are raising awareness with a story about Sarah Schelstraete, who has Down Syndrome. It’s called Sarah’s Story: Hard at work despite disabilities. One thousand points if you can anticipate from the title what my major problem with the article was.

Now, impairments can make particular kinds of work, or work at all, difficult for people with disabilities, particularly when accommodations – be they ramps or particular lighting or a chair or whatever – are not provided. Leaving aside any accommodations Ms Schelstraete might utilise (it’s irrelevant and really none of our business) there’s no indication as to what impact her impairment might have that would make it hard for her to work at her job as the article title suggests. In fact, the article doesn’t tell us what her job actually is, but moving right along. Now, I’m not saying she definitely doesn’t have challenges related to her impairment, but rather that I have a problem with a particular narrative that this article taps into. This is a narrative that erases Ms Schelstraete’s individual situation, whatever that might be, in favour of conveying disability as something the poor dears must overcome! in their tear-inducing (to abled people) efforts! to live a normal life! which includes paid work!

Perhaps it is that push to gloss everything over that skews the narrative here, but let’s take a gander at the actual information the article provides. Ms Schelstraete is clearly a ‘dependable employee,’ as her supervisor Donna Martis says. She does her job well; interviewees are enthused about her being good at her job. There is not really a need, it would seem, to say that she is doing a good job in spite of her being disabled. She is good at her job. And she is disabled. Just like she is good at her job and a woman, good at her job and a daughter, good at her job and a resident of Indiana, good at her job and, I don’t know, maybe she likes detective shows or cupcakes or whatever. But time and again when disabled people are featured in the media, there’s a kind of shock that “those people” could achieve anything of worth – worth defined according to ableist standards around paid work, of course.

As such, I have a problem with wording like this in the article:

‘Martis said Sarah is a valuable employee who knows how to do her work, and requires little supervision.’

Or how about this?

‘Like any hard-working employee, Sarah knows one big benefit of having a job is making money. She often uses her paycheck to buy DVDs and CDs.’

Yep, just like everybody else – yet her competence must be uniquely examined and confirmed by all these people, despite her having been employed by the same laboratories for seventeen years. This is yet another example of the media trope in which PWD are achieving! through! the hardship! Would you like to know what a hardship is? For many PWD, sometimes more than our impairments themselves? Putting up with that condescending bullshit and fighting to be approached as actual people who should be approached with respect. Because handing out “well done!” stickers has nowhere near of the same value as does being treated like a person with things to offer.

These kinds of awareness-raising stories do little more than give abled readers/viewers/listeners a lift, a feel good story they can tuck away out of mind when they’re done. It’s easier for PWD to be a one-dimensional story, those people put there to light up abled people’s worlds with inspiration, prompting a whispered gratefulness that they’re not one of them. How about we raise some awareness of the social oppression attached to being disabled? Awareness ought to be raised about how many disabled people are out of work because, as Ms Schelstraete’s employment consultant Stacey Simcox says, many ‘don’t give someone the chance because they already have the mindset that they’re not going to be able to do the job even with the support’. About how disabled people so often are treated as though they’re being done a favour by being employed at all. About how work can be a struggle or impossible because of workplace bullying. Because of refusal to provide decent wages. Because employers won’t grant equitable working conditions or accommodations.

And let’s raise awareness about the valuation of work. There’s a nasty thread that runs through these kind of stories that holds disabled people to be societal leeches, a drain on resources. This kind of thinking defines human worth in terms of money, as though people are only good for how much money they contribute and how little they take from welfare or healthcare programs and such. It’s the kind of argument used against poor people who need that assistance, it’s the kind of argument that has led to women’s unpaid work in the home being so devalued. It’s thinking that tries to shame those who utilise thoroughly deserved government assistance, as though it doesn’t exist for a reason.

I am continually astounded by negative reinforcement of difference, but barely ever really surprised. You’d think efforts to raise awareness would require being aware.

Oh Canada: This week in Canada & Disability

anna rants, autonomy, bodies, disability activism, invisibility, representations, television, , , , , , , , ,

It’s been an interesting week or so in Canada regarding issues around disability. “Interesting” here means hit and miss.

I could, for example, direct you to the coverage of the Paralymic Games, but that site appears to be inaccessible to screen readers. It’s very busy, and has a lot of flash on it. There’s an audio slide show – the first I’ve ever come across – but you need to download something in order to run the audio.

So, hit and miss there, I guess.

Of course, then we get this story: No sugar-coating for disability exhibit: Co-curator’s trip out west parallels struggle to overcome obstacles in Out from Under

For disability rights activist Catherine Frazee, the personal overlaps with the political even when she doesn’t intend it.

That happened with Frazee’s recent journey to Vancouver from Toronto for Out From Under, a unique exhibition on the social history of disability in Canada.

As one of its three curators, she felt it was important to be here for the exhibition’s opening during the Paralympic Winter Games.

Frazee, the director of Ryerson’s Institute for Disability Studies, can’t fly for medical reasons having to do with living with spinal muscular atrophy, a genetic neuromuscular disease characterized by the degeneration of the motor neurons. When she travels, she is accompanied by an attendant and Patricia Seeley, her life partner.

The only option for her was to take the train.

Frazee was willing to make sacrifices to travel out west, such as sleeping in her electric wheelchair. She can’t be separated from her wheelchair, which is uniquely customized to her body’s needs. At times, for example, she has to tilt it slightly back to help with her breathing.

When she contacted Via Rail, she was told that she and her wheelchair had to travel separately.

Of course she was. *headdesk*

The exhibit itself sounds amazing and I wish I could see it. But it’s telling to me that in my country, where politicians regularly tell me they really care about the needs of people with disabilities, it’s impossible for Catherine Frazee to travel to Vancouver. Ultimately, she and her partner traveled through the US, where the Americans with Disabilities Act, as poor as it may be, still required that there be train cars that Frazee be able to use.

Or another hit and a miss: Promoting rights of disabled new foreign policy focus: Cannon

Promoting the rights of disabled people around the world will become a key foreign policy focus for Canada, Foreign Affairs Minister Lawrence Cannon said at the United Nations Thursday.

Cannon made the declaration after delivering Canada’s ratification of the world body’s Convention on the Rights of Persons with Disabilities.

Awwww. Isn’t that awesome?

Meanwhile our Prime Minister held a TalkCanada event that was inaccessible to blind or partially sighted people.

Yesterday morning Prime Minister Stephen Harper performed a first, by being the first Canadian Prime Minister to have his remarks streamed live through YouTube. Before and after the PM’s speech, and up until Sunday at 1:00pm ET, Canadians can login to the Talk Canada YouTUbe page to submit and vote on questions, which the PM will answer in another live stream on Tuesday.

As a completely blind Canadian and an Information and Communications Technology Accessibility Consultant (I help make information systems work for persons with disabilities), I take exception to the PM using technologies such as YouTube and Google Moderator (used for the questions and voting). These technologies were poorly accessible to me, and to other blind and partially sighted Canadians, including Derek Wilson who wrote about the barriers he faced. This is not the way that things need to be, it would have been very possible, should the PM have cared, to make the Talk Canada event easily accessible to a much wider range of Canadians, including the blind and visually impaired.

[I also have no idea if the actual videos will be subtitled, Signed, or a transcript provided.]

Oh, and Canada continues to refuse immigrants when family members have disabilities. The only ‘hit’ there is that we’re talking about it, I guess, since it’s been going on forever.

I’m frustrated. Politicians, business owners, school officials, everyone tells me that they really care about the needs of people with disabilities. They often do grand gestures: Ooh, we’ll show highlights from the Paralympic Games! We’ll agree that yes, we’re going to support the needs and rights of people with disabilities in other countries! We’re going to put in a Student Accessibility Services Office (because all people with disabilities on campus are students) and that will solve all the problems!

What we won’t do, apparently, is ensure that people with disabilities in Canada can get from Nova Scotia to Vancouver with minimal fuss and drama, like the currently non-disabled can. We won’t discuss how inaccessible politicians are to people with disabilities. We will express disdain that the laws in Ontario now require universities to be accessible to students before students spend months or even years self-advocating. We will approve bursaries for students purchasing equipment that helps them write their essays and do their school work in February – 6 months into the Academic year.

Oh Canada. Please do better.

Doctor Who and the Evil Wheelchair Users of Evil

representations, television, ,

Also see: Davros, Daleks, and Disability and Bloody Torchwood.

Contains minor spoilers for Doctor Who from “Voyage of the Damned” through to “The Next Doctor”.

I’ve been compiling a list of all the characters who are wheelchair users in New Who. For everyone who has no earthly idea what I’m talking about, I’m referring to British television show Doctor Who (which is well worth watching by the way) specifically the episodes airing since 2005 after a long hiatus. The show had, shall we say, not the world’s greatest history of representing disability up until that point. I’d noticed a trend of characters who are wheelchair users (or users of SF-ish devices meant to echo wheelchairs) in recent years, and some rather sinister commonalities. Here they are (though if I’ve forgotten any, do add them in comments):

  • Davros: The creator of the Doctor’s enemies, the Daleks. Evil as they come, wanting to destroy reality itself at the end of series 4!
  • Max Capricorn: The villain of “Voyage of the Damned,” who wanted to crash a ship into Earth and frame his former cruiseliner company for mass murder.
  • Mercy Hartigan: I can’t remember “The Next Doctor” so well, but seem to recall her being wired in a chair in the CyberKing towards the end, shortly before her death.
  • John Lumic from “Rise of the Cybermen” and “The Age of Steel”. Dying and desperate to stay alive, he invents the parallel universe version of Cybermen, kidnapping homeless people to experiment on and seeking to “upgrade” all of humanity. Cybermen convert him into one of them against his will.
  • Timothy Latimer: From “Human Nature” and “The Family of Blood”. A noble and brave young man who saves the day, we see him as a old man in a wheelchair towards the end of TFoB.
  • Colonel Hugh Eddison: From “The Unicorn and the Wasp”. He reveals himself to have been faking needing a wheelchair for many years in order to keep his wife at his side (presuming she’d do so out of obligation or pity, I guess).

As we can see, the trend with wheelchair-using characters in this show is that they’re evil and must die at the hands of our charming able-bodied hero. Of the two exceptions, one is a Faker™. The other is only shown in his wheelchair right at the end; he’s allowed no dialogue.

Doctor Who makes me sad because, as much as I love it, those running the show clearly have a fair bit of contempt (or contemptous indifference) regarding PWD. We’re represented very narrowly: when real, when having agency, wheelchair users (because disabled characters are always wheelchair users) are bitter villains. The very few disabled characters aren’t allowed to be anything other than caricatures. There’s nothing grand or beautiful or important or good about them, they just exist as plot points to help the story along or to be obstacles for the Doctor to overcome.

A Conversation in the Lunch Room

101, i'm right here, invisibility, mental health, othering, relationships, representations, social attitudes, Uncategorized

I was sitting in the lunch room at work with a group of co-workers, flipping through the newspapers. I came to an article on the suicide of Marie Osmond’s son, which led to the whole table discussing the incident. And it was immediately underlined for me how little most people know about mental illness and depression. Here’s a brief list of some of the questions and statements that came up during the discussion, the entirety of which I spent shrinking into myself and trying to be invisible:

  • “Is depression even a real disease?”
  • “People who commit suicide don’t really want to die – evolution wouldn’t let us have suicidal tendencies because it goes against survival.”
  • “It must be because his mom had mental health problems too.” Someone inquired if depression was hereditary and the original speaker replied “No, but being around depressed people can turn you into a depressed person.”
  • “I once knew a bipolar. She married my cousin and my mom got so mad, like you should never marry a bipolar because it’s not a good idea for them to have kids.”

Finally, a young man told a long story about his ex-girlfriend, who had experienced major depression, and how it affected her and the serious limitations it caused her. It was a great illustration of the reality of depression and the changes it can cause in day to day life. It was unfortunately concluded with a “so that’s why you can’t be in a relationship with those people, it’s just too hard.”

We’ve got a long way to go, y’all.

How to Frame the Accommodations Debate

accessibility, activism, autonomy, identity, justice, language, normality, othering, representations

The concept of accommodations for employees with disabilities is one that exists all over the world. The basic principle of these laws is that an employee with a disability is entitled to changes to accommodate specific needs created by their disability in order to work. These can be changes in policies (changing a policy prohibiting eating at employee desks to allow an employee with diabetes to manage his blood sugar) or procedures (issuing company announcements both orally at staff meetings and by written memo to accommodate an employee with auditory processing difficulties), or even maintaining a scent-free or florescent light-free workplace, providing ergonomic modifications to workspaces, and beyond.

There are a lot of negative attitudes and assumptions surrounding workplace accommodations. It is often assumed that the employee with a disability (EWD for short) and their employer are in an adversarial position – the employee is asking for something they want but that the employer does not want to give. Providing the accommodation is seen almost universally as a loss for the employer, because providing it will cost them, either by purchasing new equipment or in administrative costs and hassle for changing existing policies and procedures. In the United States, it is often made very clear to employees that accommodations are provided solely because the Americans with Disabilities Act (ADA) requires employers to cooperate, not because the employer wants to assist with accommodations or believes it will improve the overall workplace in any meaningful way.

The cost of the accommodation, whether direct or indirect, is often seen as offsetting the worth or value of the EWD and limiting the benefit the employer can derive from an individual employee. More broadly, this is seen as discouraging employers from hiring EWDs in order to prevent the need for these accommodations. This means that accommodations are often seen as “special treatment,” for EWDs, requiring a whole set of special procedures by which EWDs can request accommodations and have them evaluated and special staff to learn the ADA and evaluate accommodations and …

Another feature of accommodations for EWDs is that although they are supposed to be individualized and tailored to the specific needs and responsibilities of an individual employee, employers often think of providing specific, pre-determined accommodations based on the type of disability the EWD has. For example, employers often consider themselves to have fulfilled their accommodation duties for people with physical disabilities if the workplace is wheelchair accessible and the parking lot has a handicapped parking space. Any additional requests from accommodation are likely met with bewilderment by the employer – “we already took care of all of the accommodation issues!”

It was with all of that in my mind that I read this recent article from ABCNews, with the headline “Employees Healthier When Boss Is Flexible.” The article discussed the benefits of flexible work schedules for employees without disabilities:

“Flexible working initiatives which equip the worker with more choice or control, such as self-scheduling of work hours or gradual or phased retirement, are likely to have positive effects on health and well being,” Clare Bambra of Durham University in the U.K., told MedPage Today. “Control at work is good for health,” Bambra said. Overall, the researchers found that situations that gave the employee more control over scheduling have positive effects on health and well being, particularly with regard to blood pressure, sleep, and mental health. A third study found significant decreases in systolic blood pressure and heart rate for workers with flexible scheduling, Bambra said. Conversely, Bambra and colleagues found that mandatory overtime and fixed-term contracts had absolutely no positive effects on health outcomes.

Although the article did not analogize these flexible work schedules under employee control to the principle of accommodations and disability was not explicitly mentioned in the article, I couldn’t help but connect the two. The idea of allowing an employee to control their own work schedule based on her own needs is exactly the principle behind accommodations – tailoring the work requirements and environment to the individual and specific needs of the employee, rather than requiring everyone to comply with universal policies set by the employer. It’s also implied that these flexible policies benefit the employer by creating healthier and happier employees who are, in turn, more productive at work.

This made me wonder if it would be helpful to adopt this framing for accommodations arguments, as in “see, assisting employees to accommodate their individualized needs results in better outcomes for both employees and employers!” Framing the argument that way addresses a lot of the negative issues around accommodations discussed above: the employee and the employer are working together rather than against each other; providing this flexibility is seen as a benefit to, not a loss for, the employer; this maximizes the work, worth and value of the employee rather than offsetting it; accommodations are good business practice rather than special treatment imposed by law; the individualized nature of accommodations is emphasized and changes must be dictated by the employee’s view of their own needs.

There is a potential drawback to this framing, however – it does not explicitly mention or focus on PWDs. I see this as potentially harmful given that the need for accommodations for PWDs is created by the historic and continuing othering of and discrimination against PWDs. (See amanda and wiki on the social model of disability for more about this.) Advancing the principle of accommodations for employees without explicitly focusing on PWDs removes a lot of the disability-based stigma from the discussion, but also removes the historical context that has created a need for accommodations. Similarly, framing the issue as a smart business practice than a civil rights issue removes the discussion of “special” rights or treatment, but removes focus from the fact that PWDs deserve these rights to counteract oppression based on their disability status.

This framing technique also dilutes the concept of what an accommodation is and extends it to all employees, whether or not they have disabilities. This could be dangerous, as it would allow employers to think about accommodations in terms of overall economic benefit – this might encourage them to deny specific accommodation requests that would be considered too costly for the company, or insufficiently beneficial to the overall bottom line. While that may be unwise for employers, given studies like this, it would not be illegal and would not be a civil rights issue for employees without disabilities. For EWDs, however, denying accommodations is a civil rights issue, because accommodations are required to allow EWDs equal access to employment benefits in light of the barriers that exist because of historic and continuing oppression and discrimination against PWDs on the basis of their disabilities. Expanding the focus of accommodations to all employees de-emphasizes the rights-based aspect of accommodations for PWDs to the point of invisibility.

I’m not sure whether the benefits or costs of this framing of the accommodations argument are stronger. What do you think? Have I ommitted any advantages of using this framing? Any disadvantages? Which framing – current rights-based arguments or these non-PWD centered business arguments – do you think is best?

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

activism, bodies, creative work, feminism, i'm right here, identity, intersectionality, invisibility, justice, marketing, media and pop culture, meta, normality, othering, representations, social attitudes, Uncategorized, , , , , , , , , ,

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 round–ups 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.]

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Pop Culture: The Good Wife & Disability

bodies, feminism, representations, television, ,

About two or three weeks ago, I finally got around to noting the existence of the show The Good Wife. And then I watched every episode I could, as quickly as I could, because wow is this show good.

It’s one part legal drama, one part family drama, and one part mysterious conspiracy theory drama. The Wikipedia summary is pretty good: “The storyline focuses on Julianna Margulies as Alicia Florrick, the wife of Peter Florrick (Chris Noth). Her husband has been jailed following a very public sex and corruption scandal. She returns to her old job as a litigator to rebuild her reputation and provide for her two children.”

Except the whole article somehow manages to skip over how feminist the show is. In the early episodes, Alicia has a male coworker who is pretty damn sexist to her, including talking down to her, ignoring what she says entirely, and acting like her being both older and a parent makes her not very smart. Later episodes have her pointing out how she keeps getting shunted aside to “hand hold” clients, which she admits is important but is curtailing her career. And these things are shown as being bad, not as being acceptable because, you know, woman.

The show is filled with interesting relationships between women as well. We’ve got Alicia’s relationship with both her investigator, Kalinda, and one of the managing partners, Diane. Both relationships are complicated by professional needs and the fact that they’re still working in a sexist office environment. Diane is involved in EMILY’s List, and there’s an implication that her “pet project” is looked down on by her male colleagues.

At home, Alicia’s mother-in-law has come in to help care for the kids while she’s working and Peter’s in jail, and their relationship is also complicated, with concerns about parenting and their different views of Peter’s prison sentence.

I just love this show. Love it.

But I’m not just talking about it here because it’s awesome. It also managed to (mostly) side-step some disability fail that I was expecting.

The rest of this is full of spoilers for Season 1, Episode 4, “Fixed”.
Continue reading Pop Culture: The Good Wife & Disability →

Evelyn Evelyn: Ableism Ableism?

bodies, creative work, language, media and pop culture, normality, othering, representations, social attitudes, , , , , , , , , , ,

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.

Who Shall Remain Nameless: The Othering of PWD

invisibility, language, othering, politics, representations

Julie Petty.

Ricardo Thornton.

These are the names of the self-advocates who joined Special Olympics CEO Shriver and others in asking Rahm Emanuel to apologise for his use of the R Word, and to join the R-Word campaign (the original R-Word campaign is here).

But you’ll be hard pressed to find that info in most of the papers. They’ve been erased. Relegated to “other…”.

A P.S., at best.

What we’re hearing, instead, is that Emanuel apologised to Shriver, and Shriver accepted his apology. A few examples:

LA Times:

[Emanuel] apologized and met privately this week with half a dozen advocates for people with disabilities, including Timothy Shriver, chairman and chief executive of the Special Olympics.

HuffPo (who also published “Rage Against Rahm Was, Well, “Retarded”“, by a “humourist”):

Special Olympics Chairman and CEO Timothy Shriver personally accepted an apology from White House Chief of Staff Rahm Emanuel on Wednesday, days after comments surfaced in which Emanuel used the word “retarded” to describe a proposal made by a group of liberal Democrats.

According to a joint statement from Shriver and five other disability advocates who attended a meeting at the White House, Emanuel “sincerely apologized for his mistake and the pain it caused in our community.”

ABC News:

After the Journal story was published, Emanuel called Special Olympics Chairman and CEO Timothy Shriver to apologize.

Shriver and four other advocates for the disabled community will meet with Emanuel at the White House at 2:00 PM tomorrow, Wednesday February 3, 2010.

New York Times:

Mr. Emanuel apologized to Tim Shriver, the CEO of the Special Olympics, but today went one step further, by meeting for about 30 minutes in his West Wing office with Mr. Shriver and other advocates, including leaders of groups like The American Association of People with Disabilities and The Arc, which changed its name nearly 20 years ago from the Association for Retarded Citizens.

Washington Post:

In a statement after an afternoon meeting at the White House, Shriver and five other disability rights advocates said Emanuel had “sincerely apologized” for the earlier comment during a strategy meeting, which was reported in the Wall Street Journal.

Disability Scoop:

Special Olympics CEO Tim Shriver, Andrew Imparato of the American Association of People with Disabilities and Peter Berns, CEO of The Arc of the United States, were invited to the White House meeting. Two self-advocates and a parent advocate are also expected to attend.

Telegraph UK:

After a White House meeting, Mr Emanuel apologised to Tim Shriver, head of the Special Olympics, and other advocates for the mentally disabled.

The exceptions: The Wall Street Journal, and CBS. Kudos.