Category Archives: othering

Stigma Kills: A Concrete Example

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. 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.

  1. ETA since his family disclosed that he had autism in numerous public interviews.

Integrating Primary and Mental Health Care

The increased integration of mental health care into primary care is one of my pet issues. Currently, primary care providers (PCPs), also called general practitioners, provide over half of mental health treatment in the United States – which results in up to 50% of mental health problems going unindentified, undiagnosed, and untreated through the primary care system. This is a wasted opportunity, as PCPs have significant opportunities to identify behavioral health problems early and provide interventions and treatments to prevent further deterioration.

This indicates a significant split between the physical health care and mental health care systems, where people are expected to go to their PCP for physical health issues and to self-refer to a mental health care clinic or specialist for mental health treatment. This is problematic for a whole host of reasons – primary among them the simple fact that this system simply isn’t working – even though the prevalence of mental disorders in primary care is somewhat higher than the overall population, PCPs are ineffective at identifying those people and providing them with treatment. Expecting people to identify themselves as experiencing a mental disorder, overcoming societal stigma to seek diagnosis and treatment, and assuming they have the ability to access mental health services through a fragmented and poorly financed system erects barriers to treatment that are likely insurmountable to someone experiencing an untreated mental health problem. Unsurprisingly, these barriers are likely more pronounced for already vulnerable populations such as the elderly and low-income minorities.

There are a lot of benefits to better integration of mental health care into the PCP’s role. The PCP is usually the patient’s first contact with the health care system and an individual is much more likely to know how to access care from a PCP than from an unintegrated mental health system. Patients are often more willing to attend appointments with and follow up with their PCPs because of the removal of stigma from receiving treatment. Other patients may not have meaningful access to a separate or nonintegrated mental health system, either due to financial barriers, long waiting lists, or other barriers.

The most significant problem, in my view, is the expectation that an individual should be able to determine they are experiencing a mental health problem. Given that the majority of PCPs, who have medical degrees and extensive training, fail to identify and diagnose mental health issues, expecting untrained laypeople to do so – while they are experiencing the mental health problem – is beyond absurd. It is even more absurd given that many mental health issues have a physical component. Depression results in fatigue and appetite changes, as does mania. The physical experience of a panic attack is often interpreted as a heart attack. Auditory or visual hallucinations could easily be interpreted as problems with the sensory organs themselves. This is sometimes heightened by an individual’s cultural context, as many Asian cultures describe the experience of depression almost exclusively in physical terms. Expecting an affected individual to untangle the complicated interplay of physical and mental effects and diagnose themselves with a mental health problem prior to seeking treatment is bound to fail.

Another argument in favor of integration is the huge overlap between physical and mental health problems. Estimates of this comorbidity vary wildly, but range somewhere from 20% to 80% of primary care patients (useful data, no?). Having a patient access two separate mental health care systems for their treatment ensures fragmented treatments that may contradict each other and are certainly not coordinated for maximum effect. Better integration would ensure treatments for physical and mental health issues complemented each other and treated the patient as a whole person.

This seems like an uncontroversial and common sense suggestion. It was embraced by the United States Surgeon General in 2001 and by the World Health Organization in 2008, but has seen little progress or momentum since then. Some local treatment systems are taking steps towards integration, such as these trainings done by the British Columbia health system, but there have been few steps towards addressing this issue in the larger health system.

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

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.

We Need to Consider More than Universities

There’s a lot of really good stuff out in the blogoamorphia1 about sexual assault on uni campuses. The focus is specifically on USian colleges and universities though Rape Culture exists pretty much everywhere with only slight variation. It’s worth reading, if you’re up to reading about sexual assault at all. (I’m not always.)

Predators are good at target selection. All of them. We see this in the uni rapists who repeatedly assault vulnerable young people. And the analysis of these assaults and assailants is valuable. I hope the attention being focused on this issue leads to real change in how sexual assault is treated by colleges and universities because the status quo is disgusting. Victims are made to undergo ‘mediation’ with their assailants in the name of ‘fairness;’ people known to administrations to be serial rapists face only the most cursory of punishments while their victims often leave, faced with an environment that could hardly be more obviously hostile; the government agencies tasked with reducing rape on uni campuses in the US have hardly bothered to appear to do anything at all.

But I’m a little uncomfortable that the focus is on the most privileged, most visible, most likely to be photogenic segment of sexual assault victims. Not that these people don’t need or deserve attention–they do. (And really I’d like there to be much more awareness that the things cis men do to each other are not HILARIOUS PRANKS but are sexual assault and should be treated as such. Cis men, you have a task: Even if you can’t be arsed to end sexual assault of other folk by cis men, you may wish to end assaults on yourselves by cis men. Hop to it.) I just worry that the pattern we see so often where the most privileged people are centered and marginalized people are pushed to the edges will repeat itself. That sexual assault victims whose circumstances differ will have a more difficult time being heard. That there will be a sense of “Well fuck we already had to care about these college [het cis probably currently non-disabled largely white largely middle-to-upper-class] girls getting raped and now you want us to care about you? Sorry, we’re all out of giving a shit.”

Because predators aren’t just at universities and colleges. All those uni students will leave school eventually. Not all predators even go to uni. They will all be looking for targets. Not only will they choose targets that are vulnerable and have a low risk of incurring negative consequences, they will seek out environments where there are large concentrations of their preferred targets. They will search for jobs where they will be in positions of authority over those targets. Predators that prefer children try to get jobs in schools or in religious settings. Predators that prefer disabled people, mentally ill people, or elderly people look for work in hospitals and supportive care facilities. Predators that prefer sex workers become pimps or police.

Part of the problem is going to be that people will be able to relate to the uni predators better. University-age women are often attractive people by accepted standards of beauty. Raping a pretty young cis woman is understandable–the rapist was attracted to her and wanted to fuck her and wanted to cut through all the preliminary bullshit and get right to the fucking. It’s harder for people to imagine wanting to fuck children or older people or disabled people or crazy people or fat people. Who’d find that attractive? (Who would rape you?)

It isn’t about sexual attraction. A predator’s preferred type of victim may not have anything to do with the sort of people xe finds attractive in non-predatory relationships (assuming xe has any) and may be of a different gender from xer orientation. Cis men who identify as straight and prey on children who read as male by ciscentric standards aren’t necessarily lying about their orientation, even to themselves. Predation isn’t about sex despite there being sexual gratification involved. (Though the predator xerself likely doesn’t understand this.) It’s about the predator making xerself feel powerful by stripping xer victims of power. It’s about the predator boosting xer self-confidence by humiliating xer victims. It’s about the predator feeling safer by making someone else afraid. It’s about hate. It’s about entitlement. It’s about controlling the behavior of others. And like all kinds of abuse, it’s about making the victims responsible for the emotions and actions of the predator.

Sex is just the mode of abuse. The choice of victim is about getting away with it.

So how do we not lose track of this? How can we address the issue of rape on university campuses without centering that experience of rape and marginalizing others? How can mainstream anti-rape activists not treat our experiences of rape as Other, as exotic, as something incomprehensible? Because that path leads to paternalism and patronization. It’s not good for us no matter how well-intentioned. It’s the sort of thing that leads to disabled people with ovaries being sterilized without their consent or knowledge at the behest of guardians who simply assume, with ample justification, that they will be raped in institutional care facilities. Since there’s nothing they can do about that (as we all know rape is a force of nature and not an act performed by humans capable of changing their behavior2) they can at least protect those people with ovaries from some of the potential things that could result from said rape. That one of the things they are protecting people with ovaries from is the possibility of bearing a child and being a good and loving parent–which happens even when a child is conceived by an act of rape–doesn’t occur to them. They know best, and they can’t imagine this person they’re placing in an institutional care facility being a good parent.

Cross-posted from my tumblr blog, Rabbit Lord of the Undead.

  1. Sphere, pshyeah.

A Conversation in the Lunch Room

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.

This is Why We’re Always on about Language

I’m not linking to the original source because the specifics don’t matter. This isn’t about the individual people or the individual documents involved. This is just an example of how the use of ableist language harms disabled people. Sometimes our posts on ableist language are on the abstract side, so here’s something real concrete. The ableist language is “insane” used to mean “this is bad.” The disabled people are me and everyone else who has been abused and has mental illness.

Some context is necessary, though. The first quote is from the comments thread of a post on intimate partner abuse. More specifically it’s about the way people outside the abusive relationship contribute to the abuse. Even staying “neutral” or “not getting involved” contributes to the abuse: when power is unequally shared among people in a relationship, staying neutral is siding with the person with the most power. But much of the time people don’t stop with that much. They actively side with the abuser. (The reasons for this is a subject for another post. Graduate degree dissertations. Books. I’m headed in a different direction right now.)

One of the commenters expressed disgust with the people who’d taken the side of the abuser and ended the comment with:

How insane is that?

Here’s my reply.

It is appalling, frustrating, disappointing. It makes me want to cry every goddamn time I see it because I know my abusers are fine upstanding successful people and I’m fucked up and broken and poor.

It is not insane.

I am insane. I have had delusions and paranoia and hallucinations. There are parts of me I do not talk about ever because I am deeply ashamed of them: what’s wrong with me that this is in me? How can I be this fucked up? I spend every day working on not killing myself because the parts of me that hate me and want me dead never shut up.1

I would like, please, to not have to be the metaphor for abusers and their abettors as well as their victim. I carry enough shame already.

This is why we talk about ableist language. It’s not because we hate fun. It’s not because we have no sense of humor. It’s not because we want to take people’s words away.

It’s because we shouldn’t have to be the metaphors for our own oppressions.

  1. Unfortunately, none of this is even exaggerated.

How to Frame the Accommodations Debate

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?

I’m not here for your inspiration

I think I upset one of the newer employees at my favourite tea shop today. Most of the staff are used to my cynical reactions to newspaper discussions of how inspiiiiiiiiiiring people with disabilities are at this point.

But let me begin at the beginning.

Actually, no, let me begin with something important, since recent events have told me one cannot be too careful.

There is a certain way news media prefers to talk about people with disabilities. They like to tell our stories in a way that’s “inspiring”, that’s about making non-disabled people feel better about stuff. “Oh, look at how brave that person is, being all alive and stuff despite having a disability! I would rather be dead! That person/their parents/their loved ones are so brave and inspiring! I will now put issues of accessibility and disability out of my mind, because I have been inspired!”

These stories aren’t really about people with disabilities. They’re about making currently non-disabled people feel they know something, that they’ve been touched, that their lives could be suffering and badness, but look how lucky we all are. Look at the plucky crippled person, and be inspired. [This is, of course, why Helen Keller is reduced to “hand in water” stories.]

There are, of course, reasons why people with disabilities and their families participate in these stories, and I certainly don’t blame them. I know if someone offered to interview… wait, I’ve been interviewed a few times now about disability, and I did leap at the chance. I don’t think that people who are interviewed for these stories are doing anything wrong. They’re talking about their lives, and describing their experiences. No, it’s the way that these things are spun, the words being used by the reporters to fill in the gaps, that is the problem.

The tendency is so very very wide spread that Haddayr (with the help of Codeman) made a bingo card for us all:

Description follows

Description written by Haddayr:
Are you writing an article that profiles or even tangentially involves a disabled person? Make it easy on yourself: string together these words and phrases with a few voyeuristic references to the person’s body parts, and call it a day!

She didn’t let her disability stop her!
Differently Abled/Handi-capable/Challenged/Some other twee or awkward phrase
Forced to use [mobility device]
Thought she would never get to [some activity most of us never get to do]
Courageous battle
He relies on [friends/a guide dog. No fair using electricity!]
Confined to a wheelchair
Then tragedy struck/her dreams were shattered/the unimaginable happened
. . . wants to help others [the ‘bless him’ is inferred]
Will never again see his childrens’ faces/hear them say ‘I love you’ canoe the boundary waters/run a marathon
Can only communicate through [communication device]
Cheerful/ Never let it get her down/ Positive attitude
Free Space:
BRAVE & INSPIRATIONAL!!!!!!!!!!!!!!!!!!!!!!!
Through the miraculous assistance of [something completely non-miraculous]
She refused to give up/give in/succumb
Defying overwhelming odds
She ‘suffers from’ [impairment]
If you saw her sitting down/lying still/riding the bus, you would never know that she has a disability…
[insert some pseudoscience]
Most of us could never imagine [horrific impairment] happening to us, but…
Every day she has to [take some medication/do some physical therapy]
He has overcome his disability!
. . . proving you can achieve anything if you really try!

So, let’s go back to my story.

I haven’t been following anything to do with the Olympics for reasons I won’t go into here, but I knew exactly what was going on when I glanced at Saturday’s Globe & Mail and saw this splashed across the front:

A Different Victory: When Alex Bilodeau’s brother cheered his gold, the triumph went more than one way. The skier and the painter find inspiration in each other – and neither one accepts limits. Ian Brown travels to the intimate heart of a family.

“Oh gosh!” I said to Don, in my overly chirpy sarcastic voice. “It’s going to be an inspiring crip story, I just know it! Quick, let us purchase this fine newspaper so we can be inspired!”

Poor dude behind the counter proceeded to tell me how inspiiiiiiiirng he found “the brother of the guy who won gold”, to which my response was… less so. “Inspiring crip stories irritate the fuck out of me.”

You know what would inspire me, gentle readers? Curb cuts being cleared of snow so Don & I could get across the street without having to go three blocks out of way first. But I guess when you’re a bitter, cynical, angry person who just hates fun, that’s what you get.

Sadly for all of us, Ian Brown’s articles don’t seem to appear on the Globe & Mail’s website (except perhaps behind the paywall), so I can’t let you read the inspiriiiiiiing story of Frédéric Bilodeau, but I can show you a BINGO card that Don & I filled out while we read it.

Description follows

Description: As above, but with the following squares circled:
Differently Abled/Handi-capable/Challenged/Some other twee or awkward phrase
Forced to use [mobility device]
Then tragedy struck/her dreams were shattered/the unimaginable happened
Will never again see his childrens’ faces/hear them say ‘I love you’ canoe the boundary waters/run a marathon
Cheerful/ Never let it get her down/ Positive attitude
Free Space: BRAVE & INSPIRATIONAL!!!!!!!!!!!!!!!!!!!!!!!
She refused to give up/give in/succumb
If you saw her sitting down/lying still/riding the bus, you would never know that she has a disability…
He has overcome his disability!

Of course, what Frédéric Bilodeau’s story has actually managed to inspire is awesome comments at the Globe & Mail like this one:

Proud for so many reasons

Alexandre Bilodeau has provided something more than his magnificent gold performance (Gold Comes Home – Feb. 15). He has provided an example of the role that individuals with a disability play inspiring us as they overcome their challenges.

Thank you, Alex and Frédéric.

Brian Smith, Toronto

Mr Smith, with all due respect, we are not here to be your thrice-damned inspirations thank you very much. Be inspired! Lobby the Canadian government to provide funding for all universities to be fully accessible to people with disabilities! That would help lots of people with disabilities overcome their challenges!

The point of this post isn’t “here I am, talking about an article you can’t read, and being as sarcastic as possible, aren’t I witty?”. It’s actually to talk seriously about the way disabled people are written about. We’re allowed to be inspiring stories of overcoming adversity – and often those stories focus on the difficulties our loved ones have, and how hard it can be to have a disabled person in your life – or we can be a passive victim of crime. That’s it.

If new media actually presented people with disabilities as we actually are… well, that, gentle readers, would be actual news.

ETA: facesofcathy found that Ian Brown’s article’s up over at CTV. (Why? I don’t know.) Check it out: The Bilodeaus: Elusive truths from an unforgettable family. I haven’t done a side-by-side comparison of the text (I think the headings are different?) but it look pretty close.

Check out the comments if you like to headdesk over how inspiiiiiiiired people find these types of stories.

Come filk with us – “Special Treatment” for PWD

Paul Kelly, if you’re not familiar with him, is a bloody marvellous Australian singer-songwriter. Some consider him the “poet laureate of Australian music”. He writes everything from fun-but-pointy ballads – Every Fucking City is one of my favourite anti-hero pieces – to political protest music.

You can read a little about him here at Debbie Kruger’s:

But there are songs that have specific intent – the ones for which he is known as “political commentator.” Songs such as “From Little Things Big Things Grow,” which he wrote with Kev Carmody about Aboriginal Land Rights, “Treaty” with Yothu Yindi on Land Rights and Reconciliation and “Little Kings,” from a more recent album Words and Music, about dissatisfaction with the Government. “Those songs are the exceptions,” Kelly concedes. “’Special Treatment’ is another one like that, a specific situation and write to it.”

Check out the song:

Lyrics are here. For those who can’t access the Youtube, it’s performed in a folky acoustic-guitar sort of way.

“Special Treatment” is a great example, in my opinion, of a piece of protest music written in first-person, using the point of view of members of a marginalised group of which the singer is not a member (I think, and please correct me if I’m wrong). Kelly is deeply respectful of the history, takes his subject seriously while introducing elements of dry humour, and has collaborated extensively with artists in the group in question. The piece targets authority sharply and with bite; its impact does not on stereotypes, mocking, fetishisation, or Othering of Aboriginal and Torres Strait Islander people.

I’m acutely aware that I run the risk of ‘splaining here, and I suspect that similar grievance-politics dynamics apply elsewhere in the world: but just to dip both toes in and take that risk for a moment: a common complaint among white middle-class Australians (WMCAs) is that Aboriginal and Torres Strait Islander people in Australia get “special treatment” from government. WMCAs complain when there are funded Aboriginal health services attempting to make tiny inroads into the appalling longevity statistics, the 20-year Gap, the rates of trachoma and hookworm and pneumonia and STDs and nutritional deficiencies. WMCAs complain when there are tutoring and bridging programs assisting Aboriginal people from remote areas to go to university, attempting to address the massive gulf between educational opportunities, entrenched discrimination, and difficulties of transitioning from remote areas to urban universities with a completely different cultural milieu.

WMCAs complain when Aboriginal people who are out of work are offered barely enough support to not starve their families; when there are programs to assist the Aboriginal prisoners who survive prison to transition back to the community; when mental health support programs are offered in an effort to reduce the 8x suicide rate among young Aboriginal people; when STD and contraception services are funded for young Aboriginal women who are raped at extraordinary rates; when funding for domestic violence and violence reduction programs are offered to women who live in fear. All this and more is dismissed as unfair “special treatment”.

In response to a post I wrote responding to a post by CarrieP at Big Fat Blog – in which Carrie wished that fat people were offered the same level of “special treatment” and respect that people with disabilities are – megpie wrote a touching filk to the tune of Kelly’s “Special Treatment”. (OK, verse three is the same – and applies pretty precisely to the situation of forcibly-institutionalised PWD.) Check it out (while listening to the Kelly original, if you can) – and add your own verses in comments.

I can’t enter my child’s classroom
Although the door’s right there
I’m stuck outside my child’s classroom
Blocked by a single stair

I get special treatment
Special treatment
Very special treatment

I’d like to work an eight hour day
In an office on main street
But they won’t offer me the same pay
Or add a ramp my chair needs

Say it’s “special treatment”
Special treatment
Very special treatment

Mother and father loved each other well
But together they could not stay
They were split up against their will
Until their dying day

They got special treatment
Special treatment
Very special treatment

Mama gave birth to a healthy child
A child she called her own
Strangers came and took away that child
To a stranger’s home

She got special treatment
Special treatment
Very special treatment

I’m not allowed to cry out loud
I’m not allowed to scream
I’m not allowed to show my rage
I’m not allowed to dream

After all, I get special treatment
Special treatment
Very special treatment

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“What’s the matter with you?”

“cant handle it? then just fucking die!”

“fuck u die slow nigga!”

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

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

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

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

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

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

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

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

Please read and abide by our comments policy.

Next page →
← Previous page