Category Archives: normality

Disability Representation in Music (Video), You’re Doing It Right: Janelle Monae’s “Tightrope”

bodies, creative work, happy posts, justice, media and pop culture, normality, race, resistance, social attitudes, Uncategorized, , , , , , , ,

This recent music video from singer-songwriter Janelle Monae is a great example of how not to completely screw up representation(s) of disability. Lyrics are located here.

And a description, courtesy of FWD’s own S.E.:

A black title card reads: ‘The Palace of the Dogs Asylum: Dancing has long been forbidden for its subversive effects on the residents and its tendency to lead to illegal magical practices.’

Two people in tuxedos are seen sitting against a white tiled wall. One is reading a book and the other is playing with a small ball, which eventually drifts up and floats in the air. The reader turns to see it and looks surprised.

Cut to an ominous-looking institution with a sign in front reading: ‘The Palace of the Dogs.’ Bright yellow text reading: ‘Monae and Left Foot: Tight Rope’ overlays the image as bouncy music plays.

Cut to a scene of a nurse pushing a cart full of medications. The scene starts with her feet, in sensible white shoes, and slowly pans up. She is moving down a hallway. As she proceeds, a woman (Janelle Monae) in a tuxedo without a jacket, with her hair in an elaborate sculpted pompadour, peers out the door of her room and then ducks back in. As she closes the door, we cut to her in her room, leaning against the door, and she starts singing.

The video cuts back and forth between the nurse moving down the hall, Monae singing and dancing in front of a mirror, and two ominous figures with mirrors for faces draped in black cloaks, seen from a distance. She eventually puts her jacket on and moves out of her room, softshoeing down the hallway, and other people, also in tuxedos, join
her. They storm into a cafeteria, where a band is playing, led by Big Boi, wearing a peacoat, a scarf, and a snappy hat. Monae jumps up onto a table and starts dancing, while people dance all around her.

As everyone dances, the nurse is seen peering around the corner with an angry expression. The scene cuts to the nurse gesticulating at the black-robed figures, who start to glide down the hallways and into the cafeteria. Monae dances right out of the wall, leaving an imprint of her clothes against the bricks, and ends up in a misty forest in what appears to be afternoon light, where she is pursued by the gliding black figures. Leaves cling to their cloaks. Evading them, she walks through a concrete wall, leaving another impression of her clothes behind, and she winds up in the hall again, where she is escorted by the robed figures. The video cuts back and forth between scenes of her
walking down the hall and the scene in the cafeteria, where music still plays and people still dance.

As she walks, a man in an impeccable suit and top hat walks by and tips his hat to her. She goes back into her room while people dance in the hall. The camera closes in on a table covered in papers and a piece of equipment which looks like a typewriter. She types a few keys, and then touches the papers, which turn out to be blueprints marked with ‘The Palace of the Dogs.’ She sits down on her bed,  rests her chin on her hand, and looks into the camera. The music fades and the scene cuts to black.

I really like what Cripchick has to say about this video: “i love the way that this video A.) critiques psychiatric institutions and B.) shows the ways that institutions/society/ableism polices our whole beautiful creative selves because if unleashed, we are powerful/uncontrollable.”

Additionally, I thought the cloaked figures were an interesting representation of the concept of the looking-glass self; another interpretation might be that they represent Bentham’s panopticon, or the sort of menacing, omipresent societal structure in which we must police ourselves constantly in order to be considered “normal.” Those are just two ways of looking at one aspect of this video, however.

What do you all think?

Words, Language, Context

language, normality, social attitudes

I had a conversation with Dorian the other day after he posted You Don’t Get It on his personal blog. He said:

My brain doesn’t really work like everyone else’s. So when you say you “know exactly what [I’m] going through”? You don’t, really. You know the same result – a paper not getting written. But you don’t really seem to explain the process that gets me to that point in my brain. It’s frankly kind of agonizing–I want to write that paper pretty badly! You don’t get it.

People didn’t like this comment of Dorian’s. [It also went ’round Tumblr for a bit.] One commenter said:

What exactly do you want people to say when you describe something like this? That you are the only one that goes through it? I can understand the hardship that you may be going through but that doesn’t mean someone else can’t experience too.

When I responded to this, I took the analogy away from struggling to complete tasks and to something that most people will see as a “real” disability [yay, disability hierarchy!!!!].

I do not have a chronic pain condition, nor do I get migraine headaches. When I’m in pain, my joints ache. I feel tired. My muscles are sore. I want to lie down.

I take some over-the-counter drugs, or have a bath, or nap, and usually wake up with little to no pain and go about my day.

When Don talks about his experiences, he talks about being in pain. His joints ache. He’s tired. His muscles are sore. He wants to lie down.

He takes a wide assortment of drugs: two doses a day of 12-hour morphine, a daily dose of oxycodin, the associated drugs to deal with the side-effects of both of those, and a few other things lying around for “breakthrough pain”, one of which we have to sign for before we take it out of the pharmacy, and another of which our regular pharmacy doesn’t carry routinely. He’s a full-time wheelchair user so he can leave the house more than once every few weeks. He spends most of the day lying down.

We use the same words to describe our pain.

Dorian also uses the same words to describe his difficulties in completing tasks that I do. When I’m procrastinating, I’m quite happy to tell anyone who will listen (and several who will not) that I’m procrastinating and having troubles and words won’t come and make my essay/blog spot write itself now please.

But my troubles are not the same as Dorian’s, anymore than my pain is the same as Don’s.

We just use the same words.

My point isn’t that people with disabilities need to use different words or that currently non-disabled people need to use different words. It’s that words come with context. When Don says he’s in pain, he’s typically talking about his chronic pain condition. When I say I’m in pain, I’m typically talking about having sat wrong for a few hours.

Context matters.

Jenny McCarthy & Autism Part 2: Let’s All Be Normal (Acting)

bodies, normality, social attitudes,

When I wrote about Jenny McCarthy last week, I focused primarily on how her “cure” efforts affect parents. Today, I want to write about how “cure” efforts affect children with disabilities.

I feel pretty safe in saying that most people who are born with disabilities, or develop a disability very early in life, have experienced the Pressure To Appear Normal. The ones I have talked to have told me that the greatest amount of pressure to Appear Normal has come, either directly or indirectly, from their parents.

In my case, I remember being yelled at by my father after my parents, unaware of how unwell I was, and still am, read the diary I was required to keep at school. Finding out how unhappy I was that way made my mother cry. After that, I only wrote fictional stories in my required-diary at school. I didn’t want to upset my parents by being “sad”. [My parents may have a different understanding of this event. I’ve never talked to them about it. I also haven’t talked to them about my repeated hospitalizations.]

It took me a long time to convince Don that it was okay to talk about being in pain and how he felt about everything. Like me, his previous attempts to talk about his disability led to his mother being upset. His attempts to appear normal means he went over a decade needing far more assistance than he was getting. He felt like a failure for getting a cane, because everyone would “know” he was disabled. Getting the cane, and now his wheelchair, has led to a drastic improvement to his quality of life – and it didn’t happen until he was in his late 20s.

If you read many of the Very Special Lessons-type news media stories about disability, they will often include a paragraph about how the person with a disability’s parents had at some point pushed for them to be in a “regular” school until, giving up, they finally admitted their child needed more help than they were able to get there. It’s often presented as a sadness, that this child couldn’t “overcome”.

From Deaf children being denied Sign Language until their late teens to grandparents refusing to be seen in public with their autistic grandchildren until they can learn to behave, there is are a lot of messages disabled children receive from their families: Be Normal. Look Normal. Don’t upset us by not being Normal.

I hope my last post made it clear that I’m very sympathetic to the situation parents find themselves in. There are simply not enough resources available to help families. There is constant pressure on parents to explain how they “made” their kids disabled, and what they’re doing to “fix it”. I don’t just think that pressure is there. I know it. I know for certain that Don’s mother still feels guilty for “making” Don disabled.

But children are very aware of the pressure to be normal. And when people like Jenny McCarthy and her ilk push “cures” for disability out there, not only are parents asked why they aren’t administering these cures, children are, either directly or indirectly, asked why they aren’t cured, too.

“Why are you still disabled when your disability is curable?”

“What are you doing to make yourself better?”

Try harder. Do more. It will make everyone else feel more comfortable.

Finally, a Dear Prudence column that isn’t rage-inducing!

blaming, language, media and pop culture, normality, othering, shaming, social attitudes, , , , , ,

In the most recent Dear Prudence live chat on Slate, a reader asked the following:

Negativity: I have had a bad couple of years—intermittent employment,
moved twice, lost a sibling. I’m a pretty positive person, but I’m
having trouble keeping my chin up, since that mainly results in me
taking it on the chin.

I have a friend who asked if I was feeling a little down, and when I
admitted it (something that is hard for me), she basically said it was
my fault, and my negative energy was attracting negative events. I
would not find happiness or get my old lucky life back until I could
learn to accept what fate was trying to teach me.

I don’t know what’s worse, her idea of comfort or the idea that she’s
right. She didn’t used to be crazy, but this New Age stuff has been
her reaction to being unemployed and living on credit cards. What
should I have said?

I could do without the mental-illness shaming (“She didn’t used to be crazy…”), but does this sound familiar to anyone who’s had to endure similar “well-meaning” advice from people who think you can — and should — just “buck up?” And oh my god, SCARY NEGATIVE ENERGY! I’ve covered the fallacies of The Secret and related pablum before here on FWD, so let’s take a look at advice columnist Emily Yoffe’s response:

Emily Yoffe: The Secret and other garbage of that ilk suggests people
abandon friends with problems so that they don’t get “infected” by
their negativity. So you could have said you understand her new set of
beliefs mean you two have to keep your distance and that you wish her
all the best.

I actually think the disease metaphor works well in showing just how ridiculous the notion of an “infection” of negative energy really is. To sum up: The flu is something you can get “infected” with, and it’s not fun. As for negative “energy,”  — if “positive thinking” works so well in combatting anything that’s not sunshine and rainbows and unicorns pooping glitter, why do positive thinkers and Secret devotees insist on dumping people who don’t fit their exact super happy worldview? Either the super POSITIVITY!!11 worldview is incredibly fragile and therefore must never be questioned, or there’s some major cognitive dissonance going on — perhaps both?

Stigma Kills: A Concrete Example

activism, disability activism, justice, language, make the world a better place, media and pop culture, mental health, normality, othering, social attitudes, Uncategorized, violence

Often when bloggers or activists push back against ableist language and stereotypes in the media, especially pop culture, someone will respond with an argument that there are more important disability issues to address and that the topic at hand is mostly irrelevant to disability rights as a whole. This has happened with each of the posts in the Ableist Word Profile series, it’s happened with discussion about ableist tropes in pop culture, it’s happened when critiquing the vast overrepresentation of criminal behavior in news coverage of people with mental illness.

I believe these things matter very much. Perhaps not individually – if I slip and use the word “lame” pejoratively, it does not automatically cause a person with a disability to die instantly. But each individual instance adds up to become a trend, to become a larger understanding and expectation of how things are. And if those understandings and expectations aren’t accurate, it can have dramatically horrific results.

This is because a lot of our ongoing decisionmaking is done automatically, unconsciously. This is because we are constantly presented with such a vast amount of information that if we stopped to consciously evaluate everything, we’d never be able to do anything at all. When I see an object with keys labeled with letters and laid out in the QWERTY design, I recognize it as a keyboard an assume I use it to manually input written data into a computer or typewriter or phone or other device. This saves me the trouble of figuring out each and every time what this object is, what it is for, how I am supposed to interact with it, and what end result I can expect. I do this instantly, even though it is immensely complicated – it has been extraordinarily difficult to program a computer to identify, say, a keyboard from a photo or video, regardless of lighting, angle, and lots of other variables that the brain can process almost instantly.

There are similar examples for evaluating other sensory input. When I touch something, I know instantly and without consciously considering it whether the object is solid or liquid, dry or wet. I have no idea how I make that evaluation and instructing someone else on making that judgment would be immensely difficult for me – but when my foot touches a wet patch of carpet en route to the bathroom in the middle of the night, I pull my foot back lightning fast to avoid what is surely cat puke. If I feel myself losing balance, I put out a hand to catch myself without consciously deciding to, because my classification of my sensations as “losing balance” was done entirely unconsciously.

How does stigma fit into this? Well, a stereotype is an unconscious cognitive shortcut – instead of examining an individual person or situation, we apply a stereotype to make assumptions. While a stereotype is usually seen as a negative thing, they serve an important purpose by allowing us to make educated guesses. For example, when I go into a fast food restaurant, I know to go to the counter and give my order to someone behind the counter, usually wearing a uniform. While this has held true at the places I’ve visited in the past, if I go to an new fast food restaurant that I haven’t visited before, I will assume that I use the same procedure. That’s a useful assumption that saves me the time and energy of approaching each situation as brand new and unrelated.

There are times when stereotypes can be harmful and damaging, as we well know. The stigma against PWDs is an assumption applied to all PWDs simply because they are PWDs, assuming they have a set of presumed characteristics, motivations, and beliefs. It is a stereotype composed of all the understandings and expectations of PWDs conveyed by all the little things – the word choices of the people you talk to, that one character in that on tv show, that story you saw on the news last night. And although the specifics fade away, most people are left with vague, unconscious associations. Again, some of these associations are essentially value-neutral, as how I generally associate red with “stop” and green with “go” from traffic lights and signs. But people can also have unconscious associations around more complex and problematic issues, like race, gender, and disability status.

Social psychologists from Harvard developed a computer-based test to measure the existence of implicit associations and stereotypes – the Implicit Association Test (IAT). The IAT asks users to rapidly categorize words to the left or right of the screen. From the IAT FAQ:

The IAT asks you to pair two concepts (e.g., young and good, or elderly and good). The more closely associated the two concepts are, the easier it is to respond to them as a single unit. So, if young and good are strongly associated, it should be easier to respond faster when you are asked to give the same response (i.e. the ‘E’ or ‘I’ key [to indicate left or right]) to these two. If elderly and good are not so strongly associated, it should be harder to respond fast when they are paired. This gives a measure of how strongly associated the two types of concepts are. The more associated, the more rapidly you should be able to respond. The IAT is one method for measuring implicit or automatic attitudes and is featured on this website. There are other methods, using different procedures, that have been investigated in laboratory studies.

I’ve taken a number of IATs before (because I’m dorky about cognitive science and this kind of stuff) and believe that they have correctly identified in me some negative unconscious associations. For example, I unconsciously associated women with home and family and men with business. Consciously, I strongly disagree with that association! So when I do consciously consider my assumptions about those associations, I override and reject my unconscious associations.

When researching this post, I took the IAT that measures unconscious associations around disability. (I can’t link directly to that test, but it can be found in the IAT demonstrations available here.) Taking the test, I found that I have a slight automatic preference for abled people over PWDs. This doesn’t mean that when I act, speak, or even think about these issues I exhibit that preference. It doesn’t mean that I “really” prefer TABs to PWDs. It means that I have been sufficiently inundated by messages that associate TABs with “good” and PWDs with “bad” that I have a slight unconscious tendency to apply that association, a tendency almost instantaneously overruled by my conscious thought. So it is an association that exists only for the tiniest of moments until it is extinguished by cognition.

How can those tiny moments, almost too small to measure, even matter? Well, as Chally recently posted about, a Los Angeles police officer shot and killed an unarmed man with an unspecific cognitive disability autism [1. ETA since his family disclosed that he had autism in numerous public interviews.]. The officer fired as the man reached towards his waistband after failing to respond to verbal commands from the police. From the LA Times article linked in the post:

[LAPD Officers] Corrales and Diego believed “he [the PWD] was arming himself” and fired, Assistant Chief Earl Paysinger said at an afternoon news conference.

“The officers made decisions in a fraction of a second,” he added.

In a fraction of a second.

Just long enough for the unconscious association to spark but not long enough for conscious thought to override it.

Just long enough for stigma to kill.

Yeah, what *about* your free speech “rights”?

activism, class issues, disability activism, global, i'm right here, intersectionality, justice, language, meta, normality, othering, social attitudes, , , , , , , , , , , , , , , , , , , , , ,

Here at FWD, it is not unusual for us to get quite a few comments in mod that question, take issue with, or outright berate our fairly rigorous comments policy and iterations thereof in varying degrees. Many of these comments are some variation of “But what about my right to express my opinion?” or “But…free speech!”

Unsurprisingly, many of the comments that try to take us to task for “prohibiting” free speech are from non-regular (and, in some cases, first-time) commenters. I try to give people — on the internet and off — the benefit of the doubt. Perhaps these folks who try to direct the conversation to their supposed right to say whatever they want “because of the First Amendment” are just unaware that many social justice-focused blogs — especially those written by people who are members of various marginalized and/or traditionally underrepresented groups — have commenting policies, usually for very specific reasons. Perhaps they think that the First Amendment entitles them to say whatever they want without also getting called on it. Perhaps they think that bigoted or hateful speech is okay, since it’s “just” on the internet and therefore cannot be taken seriously or do any “real” damage. Perhaps they think that someone needs to pay Devil’s advocate when talking to (or about) disabled feminists and other people who do not represent (or are not represented by) the majority, and they are reasonable/intellectual enough to do the job!

Here’s the thing: This website is not  run by U.S. government or employees of the U.S. government who are representing their place of work. This is a privately-owned website.  Its contributors, commenters and readers are not all from or living in the U.S. The First Amendment applies, by and large, to the United States government’s attempts to contain and/or regulate things that people say or opinions that they want to express in myriad formats. In other words, “freedom of expression” does not automatically mean that you can bust out with some bigoted crap, and then whine or call foul when the blogger or author chooses not to publish or engage with said bigoted crap, or when someone else (perhaps another commenter) calls you on this crap. Free speech is not equivalent to some sort of magical blogular free-for-all. The “free speech!!11” defense (if you want to call it that) also has the unintentional side effect of privileging US-centric notions of being able to say certain things, apparently without consequence — something that some other countries do not appear to take so lightly (see, for example, British libel laws).

From a more anecdata-ish perspective, I have noticed that many of the people, at least on the internet, who cry “free speech!!1” in defense of their supposed right to say “un-PC” things/play Devil’s advocate/et cetera are people with various kinds of privilege (white, heterosexual, abled, cis, class–to name just a few) who simply do not seem to want to give up — or, sadly even so much as critically examine — one or more of the types of unearned privilege that they have. Put simply, they just want to shut people (who oftentimes aren’t just like them for one reason or another) up using the trump card of free speech. It seems to me that the thought process might go a little something like this: Who cares if there’s a person (or people) on the other side of that computer screen? I have the right to steamroll over their lived experiences, or tell them how wrong they are ’cause “normal” people don’t feel this way, or tell them to suck it up/grow a thicker skin, or that they’re just making things up so they can be angry about stuff, or looking for stuff to get mad about, or seeing things that “aren’t there” (because if I can’t see it, it must not be there!) or use any number of derailing tactics that are not pertinent to the actual discussion at hand, or direct the discussion to my experiences and feelings as a privileged/non-marginalized person and thus re-center my own (and the majority’s) importance in a discussion that is not even about me, because it’s within my FREE SPEECH!!1 rights to do all of this and more!

Boy, that must be really fun, getting to justify making things all about you and your “rights” all of the time in spaces that are run by people who are — gasp! — different than you, and who may not have much of a safe ‘net space anyway, since the entire web is full of people who probably share at least some of your oh-so-contrarian outlook on things (not to mention some of your privilege[s]).

The free-speechers also tend to miss one important thing: If they want to spew uninformed, privilege-encrusted opinions using this excuse, and their comment gets published publicly, it is perfectly within reason for bloggers, writers and other commenters to use their free speech “rights” to respond right back.

Tasting Fear

introspective, life changes, mental health, normality, , , , ,

[This here is a warning that the author has written a post about, amongst other things, being depressed and suicidal. For this reason there is a clicky thing. Use it in whatever health you got. Also please note that with respect to my wife and our marriage you are getting exactly one perspective–mine–and everything is filtered through my experiences of abuse. This is not an objective reporting of events.]

Y’all who’ve been following this adventure know I’ve been fucked up for a while now. It’s been next to impossible to get any work done–it took me until five-thirty this morning to get caught up on my inbox. Today I got to explain why I should keep my job. On the phone. I don’t know as I was very convincing. Being highly ambivalent about wanting to keep it at all isn’t helpful with the convincing. Nor the panic that comes with phones, the stammering dysphasia aphasia that is so heavily influenced by stress.

Maybe I’ll get to keep it through the end of the month. I keep telling myself I should be at my desk now working.

I’m in bed with the notebook and I haven’t gotten dressed. I woke up six hours ago. Continue reading Tasting Fear →

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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Dear Imprudence: A “Tired Wife” Strikes Back?

autonomy, bad advice, Dear Imprudence, gender, life changes, normality, shaming, social attitudes, , ,

The hits just keep on comin’, thanks to Slate. Earlier this month in Dear Prudence, we got to read this winner:

Dear Prudence:
My husband had a stroke 18 months ago. At first he was unable to speak and his right side was paralyzed. He regained his speech and, with a lot of work, got full use of his arm and leg. But the stroke made it impossible for him to practice his profession, and he continues to have short-term memory problems. He’s home on extended leave. My problem is that he is obsessed with what he has lost and how bad things are. When I come home from work—I have to keep us fed and housed—all I hear about is what a terrible state he’s in. I’ve tried various things: We’ve gone to a counselor, his doctor has given him anti-depressants, I’ve encouraged him to go back to his hobbies. I try to plan things that will be enjoyable for him. Nothing is working. He won’t take up his hobbies or socialize, and he dwells so completely on the negative that even his closest friends are getting weary. It seems to me that he should be grateful he survived and regained so much. I am so exhausted by his negativity that sometimes I just wish I could leave him, but I would never do that. Is this the way it’s going to be forever? –Tired Wife

First, something tangential: Is this not THE perfect mishmash of weird disability-related hangups from an abled person plus some lovely Feminine Mystique-era gender(ed) expectations? It’s like it was made for a takedown on this site.

Moving on: On one hand, I can certainly see why this woman is frustrated. Adjusting to newly-acquired disability can be an extremely difficult process — not only for the person with the disability, but for their relatives and loved ones as well. However, there are a ton of stereotypes made explicit in this woman’s letter, not least of which is the “he’s just so NEGATIVE!” and the related expectation that her actions and her efforts will somehow make him become a happy, compliant Good Cripple. I have to wonder, has she stopped to consider that adjustment to disability is a long process? Or that having to go on leave from one’s job due to a newly acquired disability might, in fact, be extremely taxing on one’s self-image? Apparently not — all that matters is that he show proper gratitude (and non-“negativity”!) for all of her efforts, and not trouble her with his “dwell[ing] completely on the negative.” I am sure that many of us would find it hard to be “grateful,” too, if we had someone treating us this way due to our disability (or disabilities). Once again, a disabled person’s feelings and experiences are steamrolled over in favor of those of a person who is not disabled, and this is apparently acceptable because they are in a relationship.

The gender question, too, is worth a look; while it’s pretty common knowledge that women, on average, do much more “caretaking” work inside the home than men (at least in the U.S.), there are a few things that stick out, mostly based on what the letter writer does not mention. Was she primarily responsible for managing her husband’s schedule and social life before his stroke? If “nothing is working,” has she spoken with him about it? Please understand that I am not trying to blame her for larger sexist patterns of who tends to do the home-related care-taking and who does not; it does, however, seem odd that she has not (as far as we know) attempted to speak with her husband about this — his “negativity” nonwithstanding.

The sense that I get from this letter, overall, is that this woman has spent a huge amount of time and energy trying to fulfill the role of the “perfect” wife, and now that her husband cannot fulfill the complimentary “perfect husband”/breadwinner role, her resentment is close to bubbling over. Add to this much of mainstream white, abled feminism’s emphasis on “independence” — which seems to exist in a magical land where no one is (or should be) dependent on anyone else — it is not terribly surprising that she feels that her only option would be to leave her “negative,” disabled partner. That these seemingly opposing tendencies could show up in one letter is not surprising, either.

So, what do you think, commenters?