Category Archives: language

For Cereal, Time?

For Cereal?, language, medical practice, oyd rants, shaming, social attitudes, , , , , , , , , ,

I was perusing the internets doing some research for work when I came across this lovely list from Time.

Seems some orthopedic surgeon is now the ultimate authority on all things medical…in every iteration thereof. Doesn’t matter what specialty or what your history. Dr. Scott Haig is now the expert, so stop what you are doing, right now. Do not pass Go, do not collect $200, and certainly do not trust whatever you have worked out in your personal health care, and just do what Our Dear Dr. Scott says.

Of particular interest to me is that the Great Dr. Scott says that narcotic pain medication “never” works for chronic pain. Ever. You should never use it unless your pain is acute, and if you are using it for such, you should stop, now. Forget your medical history, or whatever other methods you have tried or that have failed you:

The drugs are relatively easy to get and tempting to take, but you should never use them for chronic pain. Narcotics addiction is insidious. The drugs change who you are, and over time they make any and every pain worse.

This tidbit makes me want to say something to Our Dr. Scott…something that starts with an “F” and rhymes with “uck You”. Because Dr. Scott does not know my pain, or what I have been through trying to manage it, or how for the first time since all of this started I am living a semblance of a life that doesn’t leave me feeling worthless.*

I have some other very interesting and loud thoughts on Our Dr. Scott’s advice on “Exercising an Injury”, “Overplayed Allergies”, and “Google Abuse”, but I will let you all have at it now. I am going to go chronically abuse some narcotics.

/sarcasm.

*As in, each person has to decide what they can live with, want to live with, are willing to live with in terms of their medical care, and base their decisions on that personal choice insofar as it is in their control to be a part of that choice. It is part of my privilege to be able to do so and to say “I want to be able to do these things, and these side effects are worth it”. It is not that way for everyone, and I want to acknowledge that.

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.

This is Why We’re Always on about Language

invisibility, justice, language, othering, , , , , , , ,

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. Unfortunately, none of this is even exaggerated.]

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.

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?

It’s Hard to Know What to Say

identity, introspective, language, meta

Sometimes I have a hard time thinking of anything to say here. In large part because it still feels, to me, that writing anything here is an act of such unimaginable daring that I should immediately take down everything I’ve already posted and get to work scrubbing cached files of any mention of my name.

I’ve noticed that it’s very difficult for me to talk about my actual experiences with disability here. The things I’ve felt, the things that posed obstacles. It’s a lot easier for me to talk about disability issues that could potentially apply to me, but which I’m not currently experiencing. The difficulties I would have were I forced to get care and treatment through government health programs in the US. The near total lack of options and assistance that would be available to me in places like Rwanda or Cambodia. But not the problems that I’m dealing with right now. Not the way stigma is affecting me this week.

Both of those kinds of writing are deeply rooted in my own experiences with disability. When I think about policy problems, I always imagine how I would be treated, how my symptoms and impairments would have prevented me from accessing the benefit in question. But when I talk about the policy, I can highlight those issues and problems (sometimes a person with depression can miss a scheduled appointment for disability-related reasons) without having to share the personal details behind it (the time I missed a class that was being held literally 20 feet away because I could not get out of bed during the midst of a major depressive episode).

I don’t trust the general discourse enough to feel safe putting my stories out there (specifically, the people who can Google, the commenters who don’t get through mod, the Tumblr reblogs). Enough of the world can still use these things as weapons that I do not want to give them any ammunition. This position is one I’ve come to through direct experience of people I’ve respected and trusted throwing things back in my face. And not just friends – I’ve had specific professional repercussions directly related to my disability status. Again, sharing more details about that would make it a more relevant and compelling story, but it would also exponentially increase my potential vulnerability to increased or future problems of the same nature.

So why is it my responsibility, as the already vulnerable person, as the PWD, to expose myself further, to hand people the tools they will then use to attack me? Is the value that PWDs add to discourse solely in sharing the intimate details of their hopes and fears, their catastrophes and failures? Is discussion based on but not including personal details inherently less powerful?

I feel like I’ve taken a major step identifying as a PWD. I am unwilling to empty myself in front of people in order to convince them to care.

“Saying conjoined twins are disabled is insulting!”: Evelyn Evelyn, redux

bodies, identity, justice, language, media and pop culture, normality, social attitudes, , , , , , , , , , , , , , , , , , , ,

[Cross-posted to Hoyden About Town]

Something that has really struck me about the conversations around Evelyn Evelyn is the reaction that “Conjoined twins don’t have a disability! To say they do is insulting!”

Not all commenters make the link between the two statements – some stop at the first – so I’ll take these two separately.

A little background: Evelyn Evelyn is Amanda Palmer and Jason Webley’s new ‘art project’, presented as fact but understood as fiction, in which they “discover” poor struggling musically-gifted conjoined twin orphan women, save them from their child porn and circus-exploitation past, and help them – in a long drawn-out process, due to the women’s traumatic fallout and difficulty relating – produce their first record. Palmer and Webley dress up as the twins to perform on stage, co-operating to play accordion, ukelele, and sing. They can barely restrain their sniggers while they interview about this oh-so-hilarious and edgy topic. More in the Further Reading.

“Conjoined twins don’t have a disability!”

So, a note on normalcy. The idea that some people would shout in defence “But conjoined twins don’t have a disability!” took me by surprise. I wonder how these people are defining “disability” in their heads, if they’ve ever thought about the subject – do they picture a hunched figure, withdrawn, unable to work, self-care or socialise? Do they picture someone undergoing huge medical procedures, someone with prostheses or other visible aids? What is the image in their heads?

Because disability can be all of these things, and none of these things. Disability isn’t a checklist, or a fixed point. Disability – and normalcy – are socially constructed. Disability is the interaction between a characteristic or a group of characteristics often called “impairments”, and a world that recognises people with these characteristics as abnormal.

Disability is considered a tragedy, a fate to be avoided at all costs. Disabled people are those that society defines as “abnormal”. Disabled bodies are the ones that don’t fit in typical boxes. Disabled people are people that the physical and social environment doesn’t accommodate. Disabled people are considered defective, deformed, faulty, frightening, feeble, freakish, dangerous, fascinating. Disabled people are stigmatised, laughed at, looked down upon, marginalised, Othered. Disabled people are medicalised. Disabled people are defined in terms of how currently-nondisabled people view them.

Disabled bodies are those that are subject to the able-bodied stare.

It is obvious with the most cursory of glances that in our society, conjoined twins are disabled. Society does not accommodate them. They are medicalised from fetushood. They are spectacle. Their operations are videoed and broadcast across the world. They are displayed, tested, stared at, discussed, and mocked, purely because of the shape and layout of their bodies. They are the subject of comedy fiction and “inspiring” tragedy nonfiction.

How can people simultaneously look at this project as funny and edgy and worth paying money to stare at, while considering conjoined twins to be “not disabled”? Why are their bodies so hilarious, then? Why is it so funny when Palmer and Webley cripdrag-up in that modified dress? Why do they snigger and smirk as they talk about “the twins” and their tragic tale? They do this – you do this – because you do see these bodies as Other. Fascinating, bizarre, freakish. Fodder.

People with disabilities resist these definitions, resist being marginalised, Othered, stared at, compulsorily medicalised. (Just as we try to resist, where possible, being beaten, abused, raped, exploited, exhibited, forcibly sterilised.) We laugh at ourselves plenty. We reclaim terms like “crip” and “gimp” and “crazy”. This does not grant able-bodied people free rein to mock us, to play schoolyard imitative games, to use child porn survivors as a little bit of “colour” for their projects.

There is a lot more to be said on the social construction of normalcy. I strongly recommend Lennard Davis’ Enforcing Normalcy . For more reading, check out this booklist at Hoyden About Town, our booklist here at Disabled Feminists, and our blogroll.

“To say that conjoined twins have a disability is insulting!”

This one’s quicker and easier to debunk. No, it’s not insulting. It’s as simple as that. It’s not an insult because being disabled is not an inferior state. Saying that someone is disabled is no more insulting than saying “Lauredhel’s a woman” or “Barack Obama is black”.

Being disabled just is.

~~~

Further reading on the Evelyn Evelyn conversation:

Annaham’s post here at FWD, Evelyn Evelyn: Ableism Ableism?

Amanda Palmer’s blog: The Whole Story Behind “Evelyn Evelyn” [WARNING: invented story about child sexual abuse and exploitation; the other links discuss this also]

Amanda Palmer’s blog: Evelyn Evelyn Drama Drama

Jason Webley: Blog #1 – Evelyn

Amanda Palmer’s twitter, in which she remarks “setting aside 846 emails and removing the disabled feminists from her mental periphery, @amandapalmer sat down to plan her next record.”, and follows up “pain is inevitable. suffering is optional.”

SPIN magazine: Meet Amanda Palmer Proteges Evelyn Evelyn

Sady at Tiger Beatdown: AMANDA PALMER WANTS TO SHOCK YOU. Just Don’t Get Upset About It, ‘Kay?

TVTropes: Rape Is The New Dead Parents

The linkspam roundups: First, Second, Third (and possibly more as time goes on)

Evelyn Evelyn: Ableism Ableism?

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

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

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

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

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

And then:

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

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

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

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

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

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

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

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

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

Who Shall Remain Nameless: The Othering of PWD

invisibility, language, othering, politics, representations

Julie Petty.

Ricardo Thornton.

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

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

A P.S., at best.

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

LA Times:

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

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

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

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

ABC News:

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

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

New York Times:

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

Washington Post:

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

Disability Scoop:

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

Telegraph UK:

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

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

Gender, health, and societal obligation

bodies, feminism, gender, identity, intersectionality, language, media and pop culture, representations, shaming, social attitudes, Uncategorized, , , , , , , , , ,

Kate Harding, writing at Broadsheet:

“If you ask us,” say Glamour editor Cindi Leive and Arianna Huffington, “the next feminist issue is sleep.” Personally, I never would have thought to ask those two what the next feminist issue is, but they make a pretty good case. “Americans are increasingly sleep-deprived, and the sleepiest people are, you guessed it, women. Single working women and working moms with young kids are especially drowsy: They tend to clock in an hour and a half shy of the roughly 7.5-hour minimum the human body needs to function happily and healthfully.” The negative effects of chronic sleep deprivation are well-documented, but that doesn’t inspire enough people to prioritize rest, and women often end up in a vicious cycle of sacrificing sleep in order to do extra work and make sure their domestic duties are fulfilled, causing all of the above to suffer. “Work decisions, relationship challenges, any life situation that requires you to know your own mind — they all require the judgment, problem-solving and creativity that only a rested brain is capable of and are all handled best when you bring to them the creativity and judgment that are enhanced by sleep.”

So many obligations are heaped on the shoulders of women, and it is pretty much impossible to fulfill all of them even if you completely neglect your own needs. Of course, trying to tend to your own needs means even fewer of those obligations fulfilled, and there are cries and admonishment of selfishness and failure and responsibility to others waiting for you should you assert your right to self-care, because by asserting the right to take time and energy exclusively for yourself, you are stealing time and energy that belongs to others.

Sleep is a contested act in American society (perhaps in others too, but I can only speak to the US): getting little of it becomes a point of pride; getting a lot of it is a symbol of laziness, selfishness, sloth, dirtiness, carelessness. People are expected to perform amazing tasks on as little sleep as possible, which is completely counterintuitive, because most people are going to perform worse with insufficient sleep — consider it a generalized manifestation of the supercrip phenomenon: exactly the people who are least supported/enabled to do something are the ones who are expected to do it better than normal people.

Better sleep would surely benefit many of us, but why?

According to Leive and Huffington, the main benefits realized are in service of others; the main beneficiaries are the people around you. Or, if you see the benefits, they are benefits that stem from an obligation to others, any self-benefit remaining firmly subordinate to the “greater good” of one’s family, colleagues and community members.

We should be well familiar with the concept of women as public property. Women’s bodies, women’s time, women’s possessions, women’s decisionmaking capacity, women’s self-determination — just about anything a woman possesses, though she doesn’t really possess. Rather, she is allowed use of something that is under her care but not her ownership: it belongs instead to the people around her.

Feminists are familiar with the idea that our society considers female reproductive organs to be public property. A woman’s vagina should be available for all comers (men), and simultaneously be unavailable so as not to waste its value to its eventual sole owner (a man). A woman’s uterus is to be used for the good of the human species/civilized society: the right kind of women are to reproduce as much as possible, so that their kind remain the dominant group in both pure numbers and in overall power. (On the other hand, the other kinds of women are called upon to perform the rough, menial work necessary to uphold modern society, while not polluting the human species by reproducing themselves.)

But honestly, public ownership of women extends so much further than their reproductive systems.

No woman is allowed to assume ownership of any part her physical self, her time or purpose: it is still an “indulgence” for a woman to eat anything more substantial than a leaf of lettuce, still “sinful” to enjoy less than 100 calories of overprocessed puddings and crackers. It is still somehow selfish to take a long bath or to sit and rest for an hour’s time, still slothful to refrain from moving, working, pushing, rushing every single moment of every day.

Women’s work, in general, is under-valued and un(der)paid — and it is uncompensated precisely because women’s time, their energy, their effort, do not actually belong to the women themselves, but rather to the rest of the world. It is theirs to use whenever, however, and however much they wish, and isn’t it ridiculous to suggest they should pay for the use of something that belongs to them in the first place?

This is all part and parcel of living in a patriarchy, a predictable result when society relies upon a person’s gender to determine hir position in society, the things sie will do, the roles sie will play, the direction hir life will take. But gender is not the only variant in play here. In fact, I believe that gender is actually secondary here to another factor — it is merely one avenue of manifestation for our cultural construction of health.

Surely you have heard of the theory that gender is not an inherent trait, but a performance. This theory is definitely not without flaws, but I bring it up in hopes that it provides a familiar framework for a discussion on the social construction of health.

Health, you see, is not merely an inherent trait. Health, instead, emcompasses a variety of factors, including a person’s intrinsic qualities but also the environment in which they operate and their everyday behaviors.

Health is not just what a person is. Health is also what a person does. And what drives a person to do something is not wholly internal, but rather is largely influenced by external factors.

Gender, for instance, is both an internal sense of being and something we do for other people, something we do because we want other people to think about us, react to us, in certain ways. And the things we do, and the expected reactions to them, are different depending on which culture we are operating in — dependent on where we live, on our ethnicity, on our class background, on any number of other things. What it means to wear certain types of clothing is different in different cultures. What it means to speak a certain way is different in different cultures. And so on.

This framework is — I hope — useful for understanding what health actually is.

The form “health” takes is different depending on the expectations of the culture you live in.

The ultimate importance of that so-defined “health” is different depending on the expectations of the culture you live in.

The role “health” plays in the culture, what “health” means in that culture, the way the people of that culture interact or engage with that idea of “health,” are different depending on the expectations of the culture you live in.

What you do to achieve “health” is different depending on the expectations of the culture you live in.

How your health affects your position in life, your economic opportunities, the support that is offered for you to live the kind of life you desire, are all different depending on the expectations of the culture you live in.

(And yes, all of this is just as true in a culture that makes use of the scientific method and sees itself as cool and rational. What is investigated, and how, and how the results are interpreted, and what lessons are drawn from those results, and how those lessons are applied in everyday life — all these things must grow out of the culture they happen in! )

Health, then, is not merely a personal state, but rather a cultural fulfillment. Health (of whatever kind) is expected of you, expected by the people around you. Your health is not your own, but instead belongs to your family, your community and your wider culture. You must achieve and maintain (whatever kind of) health, not because it benefits you personally, but because you will have deeply failed your fellow members of society if you don’t.

And this is what underlies the problematic aspect of Leive and Huffington’s statements. They are not suggesting that the sleep deficit for women is a problem because the woman herself feels fatigue or cognitive dysfunction. They are suggesting that the sleep deficit for women is a problem because the woman cannot fulfill the expectations of health — and the performance of duties that rely on that state of health — that society has for her. They are suggesting that the sleep deficit for women is a problem because then that woman personally fails her family, community and country.

Here, then, her lack of sleep lays bare her duty to society based on particular qualities she holds. But the disparity between her duty and her male peer’s duty would not exist if all of us did not have a duty to society to achieve and maintain a certain kind of health.

And Leive and Huffington, purporting to be advocating on women’s behalf, do nothing but reinforce the same system that screws women disproportionately when they center a woman’s obligations to the people around her over the personal experience of the woman herself.

And here, I hope, feminists will understand what disability activists mean when we talk about the supposed obligation of mentally ill people to submit to (certain kinds of) treatment for the sake of the rest of society — or what fat acceptance activists mean when we talk about the supposed obligation of all people to be as thin as possible for the sake of the rest of society — and so on.

Eating “healthy” (as determined by mainstream cultural wisdom, largely controlled by wealthy white temporarily-abled folk) is not done solely for oneself. Neither is “exercise” (of course, what counts as physical-activity-that-improves-health is controlled by the same people who control what counts as food-that-improves-health). Participation in the paid workforce is not done solely for oneself — we are, in part, fulfilling the obligation of “responsibility” (which is a component of the health performance, because when health is lacking, the ability to work declines — so work, then, is a demonstration that you are fulfilling your health obligation).

When a person neglects to fill a health-related obligation, there is someone there to remind them of the cost to the rest of society. We’ve all heard figures on the cost of obesity, the cost of heart problems, the cost of low employment rates, the cost of suboptimal nutrition, the cost of insufficient sexual education, the cost of lost sleep… wait, that sounds familiar. Anyway, the cost might be in dollar figures, might be in time lost, might be in persons participating in x activity, or might be more intangible: work decisions, relationship challenges, judgment, problem-solving, creativity… wait a second, didn’t we just hear that? Oh yeah.

And that’s what’s wrong with this angle. Ladies, you are hurting your families! You are failing your communities! You’re dragging all of society down with you! When all you have to do is get an extra hour of sleep — seriously, how selfish are you, staying up to get the dishes clean after your kids have gone to bed so that they’ll have clean bowls to eat cereal out of in the morning?

Except that the entire reason women are getting less sleep than they need is because they’re busy fulfilling their obligations to the rest of the world. The entire reason women are getting less sleep than they need is because they’re required to be well enough to handle multiple shifts, every single day, for their entire adult lives. The entire reason women are getting less sleep than they need is because they’re required to get up at stupid o’clock every morning to handle all the things they’re required to do before going to work (including the obligations to project an image of “health” — to look and smell fresh and clean, to be sufficiently hair-free, to wear attractive clothing, to possibly spend time putting on a face full of makeup and making her hair look presentable — all which are wrapped up in appearing healthy to the people around you), and when they get home from work they still have to do the laundry and make the dinner and wash the dishes and pick up the floor and wipe down the kitchen and bathroom counters and possibly wrangle kids or partners all the while —

— and then they are getting chided by self-proclaimed women’s advocates because they spend too much time doing things for other people, and not enough time doing things for oneself… for… other people…

And it’s impossible to separate the demands of womanhood from the demands of ability. It’s difficult to differentiate the hierarchy of value imposed on people of different genders from the hierarchy of value imposed on people of differing abilities.

I’m sure you get, by now, how women get completely and utterly screwed in this situation. But I invite you to imagine, then, how disabled people get completely and utterly screwed by this situation — and then I invite you to imagine how a system that did not value people differently due to their differing abilities would also remove a lot of the pressure that is currently dumped on women.

A system of equal access, opportunity, value, for people of all types of abilities, would be radically better for people currently oppressed under this gender-based system.

And when you reinforce the ability-based system of oppression, you make things worse for the women living under it.

… just sayin’.

(Cross-posted at three rivers fog.)

Guest Post: Temporarily Able-Bodied: Useful, but not always true

age, bodies, guest post, language, social attitudes, , , , , , ,

by Laurie Toby Edison and Debbie Notkin
Body Impolitic

Following up our post here late last year about “disability and aging,” we’ve been thinking about the phrase “temporarily able-bodied,” a mainstay of disability community language which we’ve both been using for 30 years or so.

In Annaham’s Disability 101 post on this blog, she says:

“AB” is an abbreviation for able-bodied; “TAB” is a slightly more to-the-point abbreviation meaning “Temporarily Able-Bodied.” TAB refers to the inevitable—namely, that most of us will face disability at some point in our lives; whether it comes sooner or later varies depending upon one’s circumstances.

We have the highest respect for the use of TAB and “temporarily able-bodied.” Using it is a way for a disability activist (or anyone discussing disability) to quickly and effectively bring all of her/his listeners into one group: some of us are disabled now and many of us will be sooner or later. It’s a phrase that builds community, that reminds people that the needs of some are really the needs of everyone. It’s akin to “universal design” as a phrase reminding us of what brings us together, rather than what separates us.

At the same time, like any catchphrase, it’s oversimplified. Disability is not inevitable. Only two things are always temporary: life, and youth. Everything else is conditional, contextual, and/or statistical. Definitions of ability/disability are exceedingly complex; even definitions of “aging” are less obvious than they might immediately appear.

Ability is not always temporary. Two large groups of people are able-bodied until they die: first, those who age able-bodied (not just 90-year-old hikers but also people over 80 who walk to the grocery store every day and clean their own homes). Second, and harder to see, are the people who die able-bodied at any age. In a culture that tries not to admit that people die at all and is especially resistant to admitting that young people ever die, it’s important to remember that death and old age are not synonymous. And, of course, disability is not always permanent either: the world is full of people who are temporarily disabled.

To return to our catch-phrase, “temporarily able-bodied” is often used as a reminder that disability can come to any person at any time, that you can wake up able-bodied and go to sleep disabled, just as you can wake up alive and never go to bed again. In this meaning, it’s both true and useful. But it’s also used, somewhat more sloppily, as a prediction: you, the individual I’m talking to, will not always be able-bodied. And among the things that are disturbing about that usage is that it encourages the cultural conflation of “disabled” and “old,” so that people in their 30s or 40s who are in some kind of body pain say they “feel old,” when what they feel is pain.

We’ll both keep using “temporarily able-bodied” in conversations about disability. And in those conversations, when we have the time and space to elaborate, we’ll explain how we’re not using it.