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Trust Me

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A couple of weeks ago I asked my PCM for a referral to OB/GYN to replace the IUD that I had to surrender over the summer. She and The Guy and I have been talking for some time about the options and realities of having another child with my condition, and the answer we came up with is that we will wait for a little longer and see if I am still doing well with my current regimen.

Usually these things take weeks to schedule, but they called the next day, and I had my referral appointment on the second day. No matter what your history in the OB/GYN clinics you have to have counseling in order to get birth control through the MTF (all the ones in which I have been treated anyway), and the idea is that you get to talk to your OB/GYN about all of your birth control options, what you want from your birth control, take his or her advice, and decide on what is best for you. That is the theory, anyhow.

Some people (like me) have an idea ahead of time what they want or what is best for them. I, for example, due to my medical history and ongoing condition, am not able to use a hormonal birth control. Because of that I know that the copper IUD (ParaGuard) is the best option for me. Also because of this, I often read up on ParaGuard and IUD use in women, and try to keep abreast of any information regarding IUD usage, risks involved, etc. The IUD has such a bad reputation from so much misinformation that I feel the need to stay on top of this. Some would say this makes me a big smarty-pants-know-it-all. I say that sometimes a woman can’t trust that her doctor is going to take her word at face falue, and in the off chance that her doctor isn’t as awesome as mine she needs to be prepared. I am privileged to have information available at my fingertips.

I did not realize that my appointment would not be with my usual kick-ass OB/GYN, Dr. K, the same one who saved my fallopian tubes and life this summer and who promised to give me a shiny new IUD whenever I was ready for it. Not panicking when I saw the face of a woman I didn’t know I sat down as she introduced herself as Nurse Midwife V and told me that she had been looking over my file. Great. Maybe she was doing her background reading too, because I really tire of bringing every doctor up to speed constantly on my condition when it is right there on the computer screen for them to see. I don’t have a bunch of degrees and I can keep up with the required reading.

Before I had even the chance to say anything she told me that I was “not a candidate for an IUD” because of my ectopic pregnancy, and that she was not going to refer me for one. When I started to say that I understood that there were some risks she cut me off and told me that my pap was also past due and kept talking. I tried to assert myself past her obsession with people rooting around in my vagina, to let her know that I was aware that there were risks involved with the IUD, but that I knew that not only was what happened to me rare, but that I knew it was rare that it might happen again. But she wasn’t having any of that. She kept right on talking like I wasn’t even there.

I told her that my regular doctor had already said I was fine to have one. She responded by saying that it usually took weeks to get in to see him, as if this was supposed to deter me somehow. I also tried asking if the new ACOG regulations had been implemented yet, thinking this might distract her and get me closer to my goal (also, I am in the lag area none of them know what to do with, being 29, soon to be 30) and all she would say was that my pap was past due. Is it? I don’t know. I had a normal one in late 2008. I am in a mutually monogamous relationship…

When I left I told the front desk that I would no longer allow Nurse Midwife V to treat me. I am currently in the process of filing a formal complaint against her. What shouldn’t have happened here was having everyone from the desk staff to the NCOIC (that’s Non-commissioned officer in charge) tell me how nice Nurse Midwife V is and how everyone likes her so much, and that she is well known for being very good at what she does. That might well be true, great. My experience is that she was condescending and rude, and didn’t help me with my medical needs to my satisfaction. I think that people forget that sometimes, that doctors and nurses are also here to provide a service for us. I have a medical need, and she didn’t meet it. I shouldn’t have to settle for that. No matter how nice and great she is to work with. I also shouldn’t have my experience erased and dismissed by everyone in place to help me when things go wrong for me. That is not good patient advocacy.

I am rather privileged, however, in that I was able to make another appointment, and I saw Dr. K the next day. Had I been someone who had to drive a long way to a clinic, I might not have been able to. Had I had to pay out of pocket for this visit, or if my insurance limited the amount of OB/GYN visits or birth control counselings I was allowed per year, I would not have been able to. Had the travel cost me money I did not have, this would not have been possible. Had I not had the type of job I do where I set my own hours, I might have had to miss work. These are the kinds of things that women face when they come up against providers like Nurse Midwife V, providers who don’t want to listen to women, who won’t talk to women about their own bodies and medical histories. Providers who don’t trust women to be actively involved in their medical processes. Providers who can’t be bothered to involved women in the partnership that should be their own medical care, especially when it comes to their reproductive health. As it was, having to go back a second time was already taxing on my spoons, and stressful, because now I have be on my game. Suddenly I have to come in educated on something that my provider should have known the first time.

Thanks to meloukhia’s indominatable Google-fu I took in the information I was looking for, backing up what I had already said, that an ectopic pregnancy did not preclude me from having an IUD (or, that a previous ectopic pregnancy was not a contraindication for an IUD). Dr. K was impressed that I was so prepared. He told me that he had heard that information, but he himself had been so busy that he hadn’t had time to read any of the journals for himself. He told The Guy (who went with me this time, because they like to banter back and forth in Korean) that I should come in from time to time to keep him updated on current women’s health, and said he wished more people came to him so informed. He said that whomever told me that I couldn’t have an IUD was wrong. I was prepared, but I shouldn’t have had to come in as if I was fighting a war.

Two weeks later I have my IUD.

Nurse Midwife V didn’t care to ask why, after having one IUD failure (as rare as they are, b/c they are pretty much the most effective form of reversible birth control out there, with a fail rate of less than one percent), I would want another IUD. She didn’t bother to find out anything else in my medical history that might affect my decision to make that very personal choice about birth control, like that I am on medication that might have contraindications with hormonal birth control, or that previous specialists had determined that hormonal birth control is a migraine trigger for me. She simply asserted her own opinion (as wrong as it turned out to be) and called it a day. But all of that information is in my medical record if she cared to look. The same record she said she reviewed when she made her initial judgment.

And now, I can’t trust her.

Originally posted at random babble…

“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)

Evelyn Evelyn: Ableism Ableism?

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.

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.)

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

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.

A Difference in Perspective: Experiencing Avatar Exceeds the Marketing

We recently took a family excursion to the theatre in Seoul to see Avatar (and we can discuss our decision to take The Kid to see it another time, as in, not at all). I thought I would suck it up and see it as a service to the rest of the team here at FWD so that I could write an honest review from the perspective of someone who has been sheltered from the marketing of the movie. You can thank my language barrier and the reluctance of Hulu to stream in our country. Wev. As you may know, the marketing of the movie and views put forth by some of the actors kicked out some seriously ableist themes. After reading this transcript of the interview with the lead actor I was prepared to not like the movie at all because of the Bad Cripple message that I got from that video, the caricature of the disgruntled former Marine, and a lot of the other tropes that were chucked out there in a lot of the reviews. In fairness, I tried to not read a lot of them so that I would come into this review with a clear mind.

I was completely prepared to hate this movie.

I pretty much surprised myself and enjoyed some parts of it. Or the parts that I feel were realistically portrayed.

That is not to say that most of this movie was a big pile of fail from a feminist perspective.

To be fair off the top: This movie is pretty fucking racist. But guess what?

This is not the first time this story has been told with this theme, so I consider myself kind of inoculated to it at this point. By the time I had seen Dances With Wolves, Pocahantas, The Last Samurai, Fern Gully, and several others I am sure could come up on a more comprehensive list, I was used to having the “White Guy meets Native Group of people (and is either supposed to betray them or not), becomes accepted into their culture, and then falls in love with Native Woman or Culture (or both), and ultimately becomes the savior of Native People” movie shoved at me every Award season. Understand me when I say that I am not OK with the implications of this; I am simply becoming numb to the experience and how ingrained it has become.

Here I go. Oh, and: EXTREME SPOILER WARNING!

LAST CHANCE TO TURN BACK FOR SPOILERS

SPOILERS!

Despite what I believed going in, Jake Sully was not a disgruntled Marine who believed that he had to get his legs back in order to be a normal human being. He wasn’t seeking the Avatar as a vehicle to deliver this to him; I found his desire to be in the Avatar directly linked to his desire to be with the Na’ Vi people in general, as he had fallen in love with them and the Cheif’s daughter (if this sounds cheesy, don’t blame me. I think Cameron drank some bad milk before writing some of the dialogue). There is one scene where Jake first enters his brother’s Avatar that he excitedly runs about the garden and experiences using legs again… curling his toes in the dirt. I am not a wheelchair user, nor an actor pretending to be one, so I don’t know what it would be like to live in either of these situations. I can imagine that being a veteran, and having your worth tied to your abled body must be an experience that changes the way you view disability.

Jake Sully’s desire for getting his “real legs” back is directly linked to his feelings of self worth as a Marine, and the actual caricature, the Marine Colonel Quaritch, does nothing to make him feel differently, but rather offers to cut red tape with the VA (who apparently is still a shit pile of failure years in the future) in exchange for Sully’s promise to sabotage the Na’ Vi from inside. Jake isn’t the brainy super genius that his twin brother was, who was able to help pioneer the Avatar technology. Sully was only valuable for the parts of his body that the government needed. Before it was his legs that could carry him into combat, and now that those were no longer doing that, I got the feeling that Sully was struggling with what he was supposed to do now. Then, in a brilliant plot device, his amazingly intelligent and never appearing in this film twin brother, conveniently died leaving him to be called up because he has the correct DNA to sync with the avatar. The reality of Jake Sully’s life isn’t that he is an ableist jerk… rather, he has only ever been as good as what his body has to offer to the government. This is reinforced by Doctor Augustine, when she uses a constant barrage of insults against Sully’s mental acumen. He doesn’t measure up to what his twin was capable of.

Jake Sully, is, again, told he is not good enough by the able bodied world.

I don’t view these as the same thing. This isn’t a disgruntled Marine. This is a society that hasn’t learned how to accept a person outside of the standard, and doesn’t yet know how to accept them into their perfect world. Society doesn’t know what to do with a Jake Sully because it doesn’t want to…and why should it? It will just cast him off and get more fresh, able bodies to replace him. He isn’t their problem any more, right?

So, it is easy to paint this movie as ableist. I was ready to cast it aside as such, probably because I already hold James Cameron as a misogynistic douche nozzle and a racist ass hat to boot. I want him to fail at this too. But what he has done here actually impressed me a little (even if the actor’s own words betrayed the sentiment). He managed to show the real pain of a veteran, separated from the only thing that has ever given him a connection to anything useful. He has shown a disabled person living in the actual world…and sadly it still exists in the future.

The rest of the movie, despite being fucking gorgeous, is a pile of tropes waiting to spring forth. Despite decent performances from actors and actresses that I adore (Zoe Saldana, Giovanni Ribisi, and Sigorney Weaver), it was cliche. You want bad ass military chick who loves to blow shit up? We got that! (she dies) We have a chief’s daughter who falls incredibly in love with the mysterious outsider! We have the White Guy pretty much slaying the dragon (almost in a literal sense), and the hot warrior chick rides off behind him on its back. I almost choked on my popcorn when I saw him waving a machine gun around in the jungle as he led the natives to battle. How about the tree hugging White woman who wants to preserve the culture of the Natives because they can’t protect themselves (she dies).

All the CG in the world can’t cover up a bunch of “been there, done that” bullshit.

I leave you to your own thoughts.

Discuss.

Do you REALLY trust women?

For the purposes of this post, I would like to remind everyone that the range of disability includes people who are mentally ill, paralyzed, Blind, Deaf, permanently injured, autistic, physically disfigured, with compromised immune systems or disordered speech or chronic pain or cognitive impairments, and many, many others. Disabilities may be fatal or not, may be degenerative or not, may be apparent or not. Being painful, fatal, stigmatized, or poorly understood does not mean that life is not worth living, and I will not tolerate any attempts to enforce a hierarchy of disability; there is no category of Especially Bad Disability that destroys any chance of worthy life.

A blue-purple sunburst in the background, white letters reading "TRUST WOMEN: Blog for Choice Day 2010"

Blog for Choice Day 2010

Have you ever participated in the stigmatizing of pregnncy, childbirth and childrearing when the parent, child, or both have, or could have or obtain, disabilities?

Have you ever participated in the cultural narratives that say:

  • Older women should not have children because their children are more likely to have a disability
  • Women with disabilities should avoid having children because their children might also have a disability, and it would be wrong, unjust and cruel to give birth to a child that is not in perfect health
  • Women with disabilities should avoid having children because only temporarily-abled women can properly parent a child, or being a mother with a disability would somehow deprive the child of necessary experiences or put a burden on the child
  • Women with disabilities should avoid having children because they are more likely to be poor and need public assistance, and their children would also be more likely to use public assistance in the future, resulting in a drain on temporarily-abled taxpayers
  • Women with disabilities would be selfish to have children, and to do so would contribute to environmental destruction, economic decline, and even degradation of the human species, and they and their children would be less valuable members of society because of their lack of perfect health
  • It would be a tragedy to have a disabled child, disabled children are less desirable than temporarily-abled children
  • Life with a disability is inherently worse than life without one; life without a disability is the baseline by which all life should be measured, so of course to have a disability would be a negative and would make a person’s life worse
  • Disabled children are a burden on their temporarily abled parents, more so than any other child would be, and this is because of the child’s disability rather than because of the lack of support and affirmation throughout all levels of society for PWD and their loved ones
  • Of course it is more desirable for a child to be perfectly healthy than to have some sort of medical imperfection, and those medical imperfections are a big stress and hassle on the temporarily abled people around the child, and there is something wrong with the child for failing to meet an impossible standard of perfection
  • Health and ability are objective concepts and our current cultural wisdom on them are completely right and the medical industry that puts them forth is infallible; our ideas about health and ability are the only right way to look at things and can be universally applied
  • To violate those cultural ideas means that you are inherently flawed
  • The answer to all of this is to go to excessive lengths to avoid ever having, or being around someone who has, health problems, up to and including letting the least healthy die off or be terminated before they can live at all

You know what? I’ll bet you’ve all done it. Even the most radical disability activist has participated in some of these cultural tropes at some point in their lives.

But I’ll bet the vast majority of people “blogging for choice” would never think of disability as related to “choice” issues, and if they did, it would be for the right of temporarily-abled higher-class white Western women to terminate a pregnancy that has a more-than-minute chance of resulting in a less-than-perfectly-healthy child.

This is why the “choice” framework fails. It fails all of us, but it particularly fails those of us who fail to meet society’s idea of the optimal person: the pale, thin, beautiful, and financially comfortable picture of perfect health. The person who never relies on others (no!), is “self-sufficient,” and isn’t likely to end up a burden on the important people.

The rest of us can “choose” to stop existing.

Do you really trust women? Or are you perfectly willing to override their choices if you feel they threaten your comfortable position in society?

And you expect me to think you’re any better for my rights and needs than pro-lifers, why?

(Cross-posted at three rivers fog.)

Edit, Saturday 1/23: I am being very strict in moderating this thread. The primary response from people who do not identify as disabled seems to be “Well, I respect your choice, even though it is clearly cruel and bad/makes me ‘uncomfortable’/is the ‘wrong’ choice.” That is exactly the opposite of what this post is saying. If that is what you got out of this post, you have a LOT of stepping back, listening, and learning left to do.

I’m not asking you to be nice enough not to forcibly prevent us from ever having children, or anyone from ever having disabled children, even as you eagerly stigmatized disabled motherhood/childhood; I am asking you to genuinely examine the deep-rooted prejudices you have been taught and challenge your thinking on childbearing/rearing and disability. I am asking you to question why you have these ideas about disability, and whether they are appropriate to hold as a person committed to social justice. Including for women.

Because, here’s a hint: a lot of us women have disabilities, and all of us were children once, and some of us will have children of our own. And we are still women. Are you really protecting women’s freedom? Or are you merely preserving the temporarily-abled supremacist structure of society, with temporarily abled women as a convenient proxy?

I ask you to consider these prompts, to attempt to truly challenge your assumptions about disability and parenthood. If you aren’t willing to do that, please don’t drop in to explain why disabled women are “Doin It Rong.” Check your privilege. Thanks.

Seven reactions to reviews of Rachel Axler’s “Smudge”

On-stage scene from the play. A man and woman stand looking into a pram, the woman with a many-limbed plush toy. The pram has a wild series of tubes and wires snaking out of it.

I’ve been shaking my head over the press for Rachel Axler’s new hipster-ableist play, Smudge. Here’s a lightning tour, with my response

s at the end. Emphases are mine.

In ‘Smudge,’ Baby’s disabled, and mom’s not much better, from Newsday:

Most couples look at the sonogram of their impending baby to see whether it’s a boy or a girl. But when Colby and her husband, Nick, scrutinize the picture of the life in her womb for an answer to the “what is it?” question, they are appalled to realize that they mean it. Literally.

Rachel Axler’s “Smudge,” the very dark 90-minute comedy at the Women’s Project, aims to be part horror movie, part domestic relationship drama. Their baby, a girl, arrives unbearably deformed, with no limbs and one big eye. Nick (Greg Keller) bonds with the unseen character in the pram encircled with tubes, and names her Cassandra. Colby (Cassie Beck, in another of her achingly honest performances) attempts to protect herself from the agony through brutal humor, maniacally snipping the arms off baby clothes and taunting the “smudge” until “it” miraculously responds. Or does it? […]

BOTTOM LINE The unthinkable, faced with wit but not enough depth

More, from Variety:

Title comes from the first word that comes to mind when Colby (Cassie Beck) gets a glimpse of her infant daughter, grotesquely described as having no arms or legs, an undeveloped skeletal structure and only one (beautiful, luminous blue-green) eye in her misshapen head.

More, from Time Out New York:

She is nearly indescribably deformed: a purple-grey mass of flesh and hair, with a single, disconcertingly beautiful Caribbean Sea–colored eye. Her horrified mother, Colby (Beck), describes the child as looking “Sort of like a jellyfish. Sort of like something that’s been erased.”

More, from SF Examiner:

Continue reading Seven reactions to reviews of Rachel Axler’s “Smudge”

Why I don’t think it’s funny to use Limbaugh’s drug abuse as a punchline.

Short background: Rush Limbaugh (link goes to Wikipedia article) is a US conservative radio talk show host who has risen to prominence in the US by inciting “controversy” after “controversy” with hateful rhetoric. He also went through an ordeal some time back for addiction to prescription painkillers, an incident that the US left likes to use against him. Recently he was rushed to the hospital again, which has spurred a new round of derision from US liberals.

Rush Limbaugh isn’t exactly a sympathetic character. His politics are vile and he makes a career out of escalating white male resentment into white male supremacy. And that causes real harm to real people who don’t meet the requirements to be part of Limbaugh’s He-Man Woman-Haterz Club.

How did he end up abusing prescription painkillers? I don’t know. Was he taking them for legitimate pain due to injury, surgery or a medical condition, and the usage got out of hand? Was he consciously using it as a recreational drug? I have to say I am still somewhat bitter about people who use the stuff I need to be able to get on with my daily life as a quick and easy “high,” ultimately making it harder to access needed medication. (But that is argument from emotion, mostly; I would posit that the real problem is a medical field and larger culture which does not take seriously the needs and concerns of chronic pain patients and is eager to punish people who step outside accepted boundaries.)

But even if he was just out for a high, I still feel unease when I see people use that angle to criticize him.

Because, here’s the thing… the same narrative that you are using to condemn this despicable figure is the narrative that is used to condemn me.

You are feeding, growing, reinforcing the same narrative that codes me as an abuser, that makes me out to be a good-for-nothing low-life, that makes it difficult for me to access the medication I need to be able to live my normal daily life.

When you laugh, joke, or rant about Limbaugh’s abuse of narcotics, you are lifting a page from the book of people who would call me a malingerer and interpret my behavior (frustration at barriers to access, agitation and self-advocacy to try to gain access) as signs of addiction. People who would, in the same breath, chastise me for “making it harder for the real sufferers.” (See why my bitterness about recreational use isn’t actually serving the right purpose, in the end?)

Maybe you don’t really think this way. But maybe the people laughing at your joke do.

And maybe, you just made them feel a little bit safer in their scaremongering about “addiction” and deliberate attempts to make life harder for us.

Scoffing at Limbaugh’s hypocrisy is one thing — but when your scoffing takes the form of a very common, quite harmful cultural prejudice — even when you don’t mean it to — it has real effects on real people’s lives. Sort of like that casual incitement that we hate Limbaugh for.

(Cross-posted at three rivers fog.)

Veterans Find Self Expression and Therapy

Moderatrix’ Incredibly Verbose Note: The linked article in Stars & Stripes held a couple of problems for me. One: It gave an impression that pharmaceutical therapy is somehow not a reasonable treatment for people dealing with mental health or anxiety disorders. This should not be taken as the opinion of myself, nor any member of the FWD/Forward team. I believe that it shows how stigmatized that direction of therapy can be, and how mental health services can be socialized to make men feel “weak” for needing them. How a person chooses to treat their mental health or social anxiety disorders is between themselves and their health care provider. Comments judging this course of therapy will be deleted and the commenter possibly banned pending a review. I will not have someone coming to this board and seeing their choice of therapy, which is helping them, mocked or dismissed.

Two: The linked article says that bibliotherapy is “poetry therapy”, when nothing I have found is that specific. Anything that I have found online, as well as my background in Greek and Latin root words, says that bibliotherapy is any type of therapy using the written word as supplemental therapy. I found that statement by the S&S writer misleading. I am willing to be corrected, but I am more inclined to believe that it is a part of a broad spectrum of treatment options. I find it like saying that “pharmaceutical therapy” means keeping someone pumped full of morphine all the time (not that there is anything wrong with that if that is what you need to manage your specific needs).

Nonetheless, I found the article incredibly interesting, and am ecstatic to find that veterans are finding ways to get care in ways that make them comfortable. Enjoy.

Spc. Victoria Montenegro received an Army Commendation Medal, complete with a “V” for Valor for helping her other team mates when her vehicle exploded in Karbala, Iraq. That same accident also threw shrapnel into her forehead and right eye. It gave her a complex fracture and bone loss in her left hand.

It also left her with PTSD.

Spc. Matt Ping also came back from “The Sandbox”, his time spent in Northern Afghanistan, he found himself mixing flashback with childhood memories. For him, the thought of a pharmaceutical approach, the normal approach taken by the VA, was too unappealing.

For both of them, a different kind of therapy program has been incredibly beneficial.

The Walter Reed Medical Center in Washington, D.C. has a program, run by Roseanne Singer, that helps veterans deal with their PTSD through the written word, mostly poetry. Participants are welcome to come to an informal gathering that takes place in the lobby of the Mologne House. Participants are under no obligation to participate, they may come whenever they feel comfortable, talk as much or as little as they like, and share or not share what they have written. The program does not analyze or critique, but rather focuses on getting veterans who find it otherwise difficult to communicate their feelings to convey them through writing. Or, as Ping , also now a part of Lisa Rosenthal’s Vet Art Project in Chicago describes poetry therapy:

“Poetry helps me deal with coming back to a society that’s gone in a different direction,” Ping said. “Coming home is one of the strangest things I’ve ever encountered. The 16 months of isolation and being secluded and then coming back and trying to be the same person you were before you left. I don’t know if that’s possible.”

Ping also has a blog where he shares his poetry (I have only scanned the front page, and I make no guarantees about triggering language).

Montenegro’s poetry focuses on the pain of being a “young, short, wounded female in a world of men,”.

“A lot of times around the hospital, I’d be mistaken for somebody’s family member,” she said. “It bugged me.”

Overall, finds the self-paced program beneficial, and enjoys the control over her own healing the . There is no pressure to heal at an expected rate, no one telling her that she should be over it by now. If she doesn’t want to share something, she doesn’t have to.

You can read her poem “Perspectives” (which I thought was moving) at the S&S link, and if you have a flash player you can listen to her read it.

The more ways we find to help our returning troops the better. If they aren’t thriving in the traditional therapy programs (and I can understand why), or if they aren’t being given proper therapy in addition to their drug treatments (I can relate), then we need to find therapy programs that do help them. We owe it to them.