Category Archives: identity

Guest Post by Sasha Feather: Book Review of The Rejected Body

Editor’s note: We are very pleased to host this post from sasha_feather, who has previously written for FWD: AWP: Crutch. FWD welcomes guest posts: please email guestposting [at] disabledfeminists.com for more information.

Sasha_feather is a science fiction/fantasy fan and anti-oppression activist. She is a contributor to Access Fandom

Book Review of The Rejected Body by Susan Wendell
by sasha_feather

The Rejected Body: Feminist Philosophical Reflections on Disability by Susan Wendell
1996
206 pages
Routledge Publishers

If you are at all interested in Disability Studies (DS), I strongly recommend this book. I felt like I had a kind, clear teacher and friend leading me by the hand through basic and advanced concepts in DS, especially relating to feminism and ethics. It is the most accessible and worthwhile academic text I’ve ever read– I don’t have a good track record for reading non-fiction books or textbooks, and I was riveted to this book. Partly this is because The Rejected Body speaks so directly to my own life experience as a person with a chronic illness. Susan Wendell also has a chronic illness, ME/CFS, which is what led her into DS from Women’s Studies.

In the introduction, the author tells you what she’s going to tell you, talks a bit about her own illness experience and finding disability identity, and–making me fall in love with this book–clarifies her language use by, in part, defining scare quotes and why/how she uses them:

“Throughout the text, I use single quotation marks as scare quotes, that is, to draw the readers attention to concepts I question or to uses about which I have reservations. For example, I use scare quote around ‘The Other’ (a concept discussed in Chapter 3) to indicate that, while the concept is a recognized way of thinking about people who are different from oneself, ‘the Other’ is not a way of referring to people which I accept or take for granted” (Wendell 7).

Like many of us I had often heard both the terms “scare quotes” and “the Other” and never really thought about what either of them meant. This book is full of little moments like that– things that I had taken for granted or that had niggled at my brain, and which the book shines a bright light upon.

In the introduction, Wendell also notes the limitations of the book, mainly that it focuses primarily on physical disabilities, that the author does not attempt to speak for all people, and that she struggles with generalizations and use of language. And that’s just the introduction!

A few of my favorite parts that I would like to highlight:

*The pace of life. As someone with fatigue and pain, Wendell is interested in the pace of life as part of the social construction of disability. Those of us who need to think or move more slowly than others are thus disabled by society. She discusses the social construction of disability in chapter 2.

*The mind, the body, and suffering. I have been thinking about embodiment lately, brain-body duality vs. integration, and chapter 7 (“Feminism, Disability, and Transcendence of the Body”) really gave me some grist for this mill. I am going to re-read this chapter shortly, especially the section on pain. Basically, feminists have argued against mind-body duality for very good reasons: because this concept has been used against women’s bodies. We’ve been invested in “Our Bodies, Ourselves”. But for bodies that are suffering and in pain, there are reasons to want to transcend the body, and there is room within feminist frameworks to develop such an understanding: of being embodied, of having bodily autonomy, and yet still wanting to transcend the body and be less tied to the body’s functions, desires, and pains.

*The illusion of control. For PWD, we know that we often do not have control of our bodies, or at best have limited control, and it is sheer luck that determines what happens, a lot of the time. Will I be in less or more pain today? Will I get some new illness? I have basically no control over these things, and I know it. And yet the society I live in is incredibly invested in the illusion of control to the point where it is part of the mythology of my country and my people. As Wendell points out, this puts me at odds with the people around me, even in casual social situations where people talk about small health problems or things to do with their bodies. It’s a disconnect.

*Having no diagnosis Wendell specifically addresses issues of disability for people with no diagnosis. There are a lot of people in this category, and it sometimes can feel like there is no place for us, no identity, especially within the medical model. The disability community, in my experience, creates a place and identity for those of us without a diagnosis.

There were so many other things that I am probably forgetting. I wanted to underline everything. I read it slowly to give myself time to process everything I was reading, but overall it’s a fairly short and accessible book, just densely packed with great information and ideas. Note that because it’s published by an academic press, it is relatively expensive; I recommend searching World Cat to find copies in libraries near you.

Moderator’s note: Moderation on guest posts is often much slower than “usual” moderation times.

By 30 April, 2010.    bodies, books, identity, life changes, representations   



Whose Voices?

There seems to be a bit of a theme these days of nondisabled people writing about the disabled people in their lives for the mainstream media. We had Sue Blackmore writing about her daughter Emily, who has anorexia, and Anne Miller writing about her husband, Michael Davoli, for example, and I’m sure there were countless other instances in the news in the last week or so, it’s just that these two jumped out at me.

This is a consistent and troubling theme in media discussions about disability. Anna touched upon this in ‘Making ‘Invisible Women’ even more invisible‘ recently as well, discussing an opinion editorial written for international women’s day by a nondisabled man talking about women with disabilities.

For nondisabled readers, I’m sure it’s very comforting to read about disability from the perspective of other nondisabled people. It’s a familiar zone. Common ground. But for readers with disabilities, it’s a repeat of the tired old story we’ve been hearing for years; people talk about us but they do not talk with us and we are not allowed to have our own voices.

These personal essays are framed as providing insight about living with disability, but really they are about what it is like to be a nondisabled person in a relationship with someone with a disability. Which is certainly a point of view which may be worth hearing at times, except that right now, it’s the dominant narrative. In the media, it’s not that hard to find examples of pieces by nondisabled people writing about living with people with disabilities. It is hard to find writing by disabled people discussing what it’s like to live with nondisabled people, and it’s hard to find people with disabilities writing about themselves and their own experiences.

In fact, it’s rather dehumanizing to reduce people to their disabilities, which is basically what these articles do. These articles are a reminder to reader that disabled persons are the other and that we are so peculiar and alien that we can only be written about. We cannot have our own voices; we cannot speak for ourselves, we cannot discuss our own experiences, we cannot push back against narratives which stick us in boxes and hide us away.

In Miller’s piece, she says ‘Such is life with Tourette’s Syndrome.’ Not ‘such is life with my husband, who has Tourette’s Syndrome,’ or even just ‘such is life with my husband.’ And she uses her personal experiences with her husband as a springboard to position herself as an authority on Tourette’s, just as many other nondisabled ‘advocates’ use their family members as tools to suggest that they know what it’s like and thus should be provided with platforms to speak from. After all, it’s not like people with disabilities could self advocate, right? It’s a good thing we have those nondisabled folks around to speak for us.

Many of these pieces have common elements. It’s so hard living with someone who has a disability! But I love ou anyway! There are so many obstacles and barriers I face! It’s a real struggle, being nondisabled. The authors write about having to advocate all the time, or having to use tough love, and nary a mention is made of self-advocacy. Of the feelings of the subject of the article. These articles often feel like they are all about the sacrifices the author has been forced to make to ‘live with disability.’

We are subjects. We are topics of study. We are topics of discussion.

What we are not is autonomous human beings. We are not capable of communicating for ourselves.

It’s not that our voices aren’t out there. It’s not that it’s impossible to find people with disabilities to write about disability and to write about their experiences. It’s that our voices are rarely centred beyond the disability community. We are rarely asked, for example, to write about our own disability for the Washington Post. We are rarely profiled by the Daily Mail. The media wants to talk to the people who live and work with us, with our friends, but they do not want to talk to us.

Is it because actually allowing people with disabilities to speak would destroy the carefully structured beliefs of nondisabled people? Would it make people uncomfortable to know that we don’t appreciate being fetishized, treated like objects, and silenced? Would allowing us a platform mean that nondisabled people have to confront their own ableism and the ableism inherent in a lot of these ‘caregiver writes about subject’ narratives?

Anger as a Constructive Force

Note: This is kind of an old post, but I think it’s still useful.

I’m sure that many of you have heard variations on the following:

“You’re just too angry. Your anger alienates people/potential allies and might make them afraid to associate with you! They won’t want to be on your side because of your anger.”

This statement, or a variation thereof, is often wielded at feminists, people of color (particularly women of color), radical progressives, non-mainstream members of the LGBTIQA community, disabled and chronically ill folks, atheists, fat acceptance activists, and others in order to get them to capitulate to some weird, unseen social standard that requires that they not offend anyone even as they fight to be heard and taken seriously, as well as for social and political justice.

There is a difference between being angry for its own sake, and turning one’s anger into action. For whatever reason, mainstream Western culture has decided that people who have historically been put down, devalued and mistreated by those in the majority should fight for their rights, but they should “be nice” while they do so. The messages that historically devalued groups have to get across, even if said messages are quite radical, should apparently be palatable even to the people who have the most social currency in mainstream society. What’s radical about that?

Anger makes people fundamentally uncomfortable, and I think that this discomfort often discourages constructive work. When those who need to express their anger, somehow, are not allowed to do so, the anger can become toxic. Instead of a catalyst for change, it becomes a symptom of a missed opportunity.

My own anger is something that I’ve just begun to embrace after years of stuffing it down and having it reappear at other times, often to my own detriment. Certainly, I may be too angry. I may indeed alienate people with some of my words. However, do I really want those who cannot “handle” what I have to say as allies, if I have to add, for example, rainbows and unicorns and puppies to my outlook on the world in order to make my outlook more palatable? No.

Anger, if used in a constructive manner, can be a great creative force. Most of the cartoons that I draw and have drawn start or started as brief doodles about things that make me or have made me angry. When I can create something that has been inspired by my own strong feelings, I feel much better and more able to cope with things such as my illness, and the physical pain and fatigue that come with it. When I take the opposite tack–that is, when I hold my anger in and don’t do anything with it–I feel worse.

[Originally posted at HAM.BLOG on August 7, 2008.]

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?

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.]

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It’s Hard to Know What to Say

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.

By 19 February, 2010.    identity, introspective, language, meta   



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

[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)

Ask Me No Questions and I’ll Tell You No Lies

In “How Do I Say ‘My Brain Is Not Like Yours’?” I discussed a lot of the frustrations I experience as a neuroatypical when I’m in social situations and attempting to navigate human interactions. Nowhere is this more difficult to me than in settings which people regard as “casual” and “low stress,” because these are the settings in which the rules I have carefully established through trial and error seem to break down, despite my best intentions.

I am speaking, here, of questions. Because, here’s the thing.

When you ask me a question, I assume that you are asking me a question because you would like to hear the answer. Thus, I am going to respond. And I am going to respond honestly, because I don’t have the social filter in my brain which tells me what is and is not appropriate; I take questions at face value. And sometimes, this turns very, very ugly.

Example:

“What you do think of the pie?”

“I think it tastes like shit. This is one of the most awful pies I have ever had. The crust tastes like cardboard sopped with simple syrup and the filling tastes like pureed ass.”

“Oh.” [tears]

Example:

“How are you?”

“I feel like crap. This whole day is turning to shit, I think I am getting a migraine, and the fucking cat pissed on the floor again.”

“Oh.” [look of extreme boredom]

Questions terrify me. Because every time a question gets asked, I have to rifle through my mental notes. I have to think about other settings in which the question has been asked, responses which were greeted approvingly, responses which were not greeted approvingly, and I have to ask myself “is this person asking because they really want to know?” Which seems utterly alien to me, because, like, why would you ask a question if you didn’t want to know the answer?

For me, I only ask a question like “how are you” when I really want to hear the answer. If I don’t want to know, I don’t ask. (And thus, I also get confused and upset when people share information I didn’t ask for, and, hello, awkwardness.)

By extension, small talk also terrifies me, because I don’t know what kinds of topics are acceptable and which are not, and I am constantly crossing invisible lines which I don’t see until I trip on them and fall down. I am constantly fouling up in social interactions. When I was a child, it got me labeled as “rude” and “wild” and now that I’m an adult I’m “rude” and “blunt.” All because I interact with people in the way in which I want to be interacted with, clearly, all cards laid out on the table, all parameters clearly established. I fear human interaction on a deep level if it’s anything beyond an interaction with clear, easily negotiable boundaries.

Like with my accountant. I can say “hello Accountant, I hope things are going well for you at the moment, I need my taxes done now, here is the paperwork.” Or, at the feed store, when I pick up the cat food, I know enough to say “It’s a lovely day isn’t it?” or “I hope this rain lets up a bit.” once my credit card has been swiped and we are standing around waiting for the transaction to clear. When I worked in retail, I could follow the formula, the “I hope you found everything you wanted, would you like a bag, $32.16 please, sign here, have a nice day” rota. I understand how to navigate professional transactions and interactions because I’ve gone through them literally hundreds of times, and I know the formula. You want to throw me off? Introduce something unfamiliar to the formula. Introduce a question which is not related to the business which we are transacting. Introduce the X Factor, and watch me fall apart.

For me, social interactions are a minefield. I have no idea which step will be my last.

By 7 February, 2010.    i'm right here, identity, shaming, social attitudes   



Gender, health, and societal obligation

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.)

Invisible Identities, Part 3: The Privileges and Pains of Passing

Previously:
Invisible Identities, Part 1: Invisible to Whom?
Invisible Identities, Part 2: The Default Human

Note:

I’m told that in the American context, when speaking about race, the term “passing” is most associated with black people due to a pretty loaded history. This is not the case where I live, simply because that’s not the history we have with the term. As such, when I speak of passing race-wise, I am not speaking only of light-skinned people of African descent who can do so. I realise that this post could therefore be a somewhat uncomfortable read for people in that context, and am putting up this note to therefore hopefully address some of that discomfort.

It’d probably be a good idea to read the previous posts in this series if you find anything else in my word use or context confusing, especially as many of the points in this post build on the previous posts.

Comments that say it’s wrong to try and pass, or conversely that someone ought to try and pass, will not be tolerated. Either way attempts to take away something of someone’s choice, experience, decision making. How one negotiates one’s own life, how one chooses to deal with all the oppressions on hir back, is hir business.

Being able to pass is a privilege. Passing privilege means that others don’t grab my body or assistive devices, people I’ve never met don’t look at me with pity or disgust and I am less likely to face intrusive and upsetting questions. Those are amazing privileges that many of my fellows in the disability community don’t share with me. Passing privilege means that I am not watched suspiciously in stores, negative comments are not made about my features, white people feel comfortable to interact with me and strangers do not expect me to act as an example of what all people of my background are like. Those are incredible privileges that many of my background do not share.

First up, we must address the nature of passing. Sometimes it is active (one chooses to pass) and sometimes passive (one is passed). Sometimes it’s an interaction of expectation and experience, habit and circumstance. One cannot untangle one’s own efforts to pass or to not from the point of the idea of passing. That is, whether one passes or not is dependant on the outside observer. The whole idea of passing hinges not on what the (non)passer does, but on the observer’s response to that person. There’s an extent to which one can control it – and people have developed quite some techniques – but it’s not always a matter of choice as to whether to pass or not.

There’s a friction between passing and solidarity with one’s group. Those who can pass as being a member of a dominant group may miss out on many experiences and forms of discrimination that are held to be facets of that group’s commonalities. One of the main problems with passing is that in doing so an inequitable system is being held up (by those who pass others, by those choosing to pass). This is to say that passing supports the idea that equality, better treatment, is gained by melting into the dominant group. This is of course true, as is evident in, for instance, shifting definitions of whiteness; but one shouldn’t have to lose their own identity to the “good,” dominant identity in order to be dealt with well. We should work not until identities disappear but until they’re all okay to have.

That burden should be placed on those making the assumptions of – enforcing – default identities, not on the passers. Passers frequently report hostility from within their own groups, and accusations of not really being a member of their community from all sides. No one is less a member of the group for other people’s perceptions and it’s incredibly offensive to suggest otherwise. Passing is not always a choice; when it is, it’s presumptuous to resent someone for that and just outright wrong where safety is involved. How one deals with one’s own experiences of oppression is one’s own concern.

Being able to pass really messes with my head. I’ve frequent bouts of intense guilt about it, and I feel sick when people in my communities admire me for the features that make me more likely to pass (‘look at her beautiful skin.’ Increasingly I need to get the nearest bathroom and scrub and scrub where they grab my arm). Sometimes I don’t feel quite real or as though I’m cheating, an intruder in someone else’s identity. With regard to being disabled, this has some nasty consequences: in the past I’ve not gotten needs met, either because I can’t bear to out myself or because someone doesn’t quite think I’m truthful. Passing doesn’t mean I’m not struggling to remain standing while we’re talking. I struggle with passing and being passed. Sometimes I try and do it to feel safer (never safe) and lose my integrity. Sometimes I am passed, and it’s a mix of delight and loss and damage. Whatever I do, it’s never enough, I’m never enough.

Now I just mostly let people think what they will. The glowing effects largely disappear once I give off too many cues. Because so much of my identity, experience and expression is tied up with those of my identities that are invisible, the effects are frequently fleeting.

Being invisible doesn’t mean I face no discrimination but that I face less individualised discrimination in many contexts. Looking like I do has not prevented, upon the acknowledgement of my identity, looks of disgust, offensive remarks about my family, having to listen to racial hatred. It has not prevented the fear in me, the way I have not felt safe since I was a little girl. It has not prevented that I modify my dress, my speech, my movements, my stories in order to appear as “normal” as possible, just like anyone else trying to not face the wrath of whiteness. Attempting to invisibilise difference is hardly restricted to those of us who can pass.

The thing is, I’ve done everything. I’ve been loud and proud about my invisible identities. I’ve done my best to make them disappear. I’ve allowed myself to be passed, I’ve actively worked to pass. I’ve just been myself, I’ve made my identities explicit. At the end of all this anxiety and modification and thought and care, one thing remains constant: it’s the perceptions and actions of people in dominant bodies that count. When I pass, there’s still the weight of many manifestations of oppression on my shoulders. And irrespective of whether I pass or not, people outside of my groups still get to determine how I am treated and how I am perceived. There is no way to win.

[Cross-posted at Zero at the Bone and Feministe]

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