Kate Harding, writing at Broadsheet:

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 FWD/Forward.)

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.

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 FWD/Forward.)

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 FWD/Forward.)

Feministe. Feministing. Shakesville. Bitch. Kate Harding, Jezebel and Broadsheet.

Every big feminist-inclined blogger who has shown such urgency and import about Stupak and abortion-within-healthcare-reform. Every feminist blogger who has used their standing, their wide audience, to urge people to do something to change this bad thing that is going to happen to people like us.

You’ve been there for all the women with functional reproductive capacity.

Where have you been for all the women stuck in nursing homes and institutions and all the women who are managing to live independently who will have their services taken back from them and be forced to move into nursing homes and modern institutions?

Because this is just as urgent an issue. And just as timely: it is being considered in the current health-care reform package. This one. This same one with Stupak (or analog). This same one you are fighting to improve for the sake of women.

Where have you been for years on the Community Choice Act?

We are talking about policy that is cheaper than subsidizing the cost of placing someone in a modern institution (nursing home, “senior living,” “care home” and the like), that allows women to have independence, autonomy, and self-determination. We are talking about a policy that gives women control over their bodies and the direction of their lives.

Just like access to affordable abortion.

We are talking about policy that lets disabled and elderly people live out in their own communities, with home services that allow them to get by on their own.

We are talking about fighting modern institutionalization, which is alive and well and still just as horrific as the stories from those old abandoned state buildings you’ve all heard about.

We are talking about saving people from being corralled, shepherded, and treated like livestock. Saving people from abusive situations, from sexual assault, from neglect and starvation.

This affects women.

Why aren’t you there with them?

Why don’t I see this addressed with nearly the same frequency or urgency? Nearly the same sense of importance, immediacy?

Because it is quite immediate to quite a lot of people. People who do not have the power you hold in our political system. (Oh, you may hold less than your male-identified young, abled, financially-privileged counterparts. But you still hold a great amount of power compared to many who are not in such a position.) People who need allies to fight with them. Let me spell that for you: N-E-E-D. They cannot see progress for as long as their younger, more abled peers continue to ignore them.

This is your chance to do something that makes an enormous difference.

If you aren’t familiar with this issue, I suggest you make yourself familiar with it. Learn about ADAPT. Read about the CCA and the arguments for it. Look into your local Independent Living center and see about opportunities for volunteering. Whether it’s high-minded political activism or low-status work doing the caring and cleaning and cooking.

Read up about disability activism, and read up about today’s institutions. Force yourself to confront reality.

And, maybe, use that platform you’ve got to share your new knowledge with others.

We need you.

So many people have complained that it is asking too much of abled people to stop using words they consider trivial: crazy, insane, lunatic, idiot, moron, dumb, blind, etc.

I beg to differ.

You know what is really damn easy? Erasing these words from your vocabulary. All you have to do is stop saying them.

You know what is really hard?

Confronting people on their use of same language.

We aren’t even asking you to do the hard work. We aren’t asking you to tell other people to stop using that language. We aren’t asking you to confront other people on their use of that language. We aren’t asking you to explain why it is problematic, to answer people’s questions, to deal with their redirection tactics, or to handle the attacks on and harassment of the people negatively affected by that language that such confrontations always seem to draw.

You don’t have to take the brunt of it. You don’t have to deal with the negative consequences. You don’t have to face employment discrimination, street harassment, caretaker abuse, and other people’s general cluelessness about our lives. You get to sit tight in your privilege, enjoying it without even realizing you’re doing it.

All you have to do is cut a few words out of your speaking and/or writing vocabulary. That’s it.

We’re the ones who are putting our safety on the line trying to change the cultural system that oppresses us.

Two seconds to reconsidering what you’re really trying to say? Easy.

Changing other people’s deep-seated attitudes? Really damn hard.

How do you think we feel when you complain that two seconds is just tooooo haaaaard for you to take on?

(Cross-posted at FWD.)

the scene: mid-morning on a wednesday. the north end of the ground floor of our building. i sit at my open-cubicle desk next to the scan/print station, barcoding applications. my coworker stands at the station, waiting for a fax to come through before she can use the copy machine.

both are silent. the sky is darkly overcast and the climate system whirrs loudly.

after several moments, she declares: “i wish…”

pause.

“i wish i could use the system.”

i look up.

at the moment, our intranet is down. i am assuming she means “i wish i could do my work.” but she continues.

“i wish i could get something. everybody seems to get something out of it. when we’re just trying to get by on our own, you know. they get something for free. i wish i could get something.”

and now i know what she’s talking about. i take a breath and try to maintain a conversational tone.

“i actually grew up on welfare. and it’s pretty hard. there’s so much you have to keep up with. it’s much better when you can make it on your own and don’t need that help.”

pause.

“when i was little, we actually got our food from food banks. you know, stale cheese and cans of evaporated milk, that was all we had. it was more trouble. i like it much better when i can do things for myself and don’t have to rely on that stuff. struggling with all that. it’s not easy at all.”

silence.

her copies are finished and she returns to her desk. i go back to my applications.

***

edited to add: if you want more on the things poor people are put through to get a few crumbs worth of help, read this old post from kactus, a poor single disabled mother whose presence on the internet I miss very much. um… in fact (looking at my comment there), it looks like it was but a few days before I started this blog!

(Cross-posted at FWD.)

I wrote this yesterday in an extreme fog and do not have the spoons to rework and polish it. Apologies for the brainspill, but these days it’s the only option I have.

***

For background, see Ouyang Dan’s post on the problematic aspects of the TV show House. Don’t tell me that people realize this is fictional. Don’t tell me that people know how to maintain that separation. Some do. Many don’t. And they’re everywhere. At the bottom of the totem pole… and in positions of power over the very people they are prejudiced against.

***

I was called back to work two weeks ago. I work at a government office that provides certain assistance programs. (Once you go to work for one government agency, you realize there are a whole lot more of them than you ever thought before.) I really don’t want to go into it any more specifically than that.

It’s been very rough on me. Last winter, work was physically draining. I basically have two whole hours every day that I am awake and not at work, preparing for work, or traveling to and from work, and semi-conscious. Not only am I so physically exhausted that I go to bed three hours after work ends, I am so physically exhausted that my brain just cannot be pushed any further. I have trouble comprehending the blogs and news sites I normally read; writing is usually out of the question. Of course, we won’t even talk about anything more physical than that — even preparing a boxed dinner for myself is too difficult. My apartment is even more a mess than usual, because I don’t have the energy to pick up the clothes that I shed as soon as I get the front door shut, the mail and personal items that trail after me from the couch to the bedroom…

Unfortunately, so far this year, it hasn’t just been physically draining. I’ve been dealing with a sudden onset of severe migraines, and not the type of migraines I’ve had since childhood and have an intimate knowledge of — these are more classic migraines, the nausea, the aura and vision distortion, the intense pain and pressure behind the eyes… The pain is not as overwhelming as my normal migraines (where a twitch of the toe makes me want to scream or cry or at least moan, but the movement and force of emitting any noise at all would hurt even worse, so I just curl up and remain frozen in misery), but the experience is just as miserable because it block’s my brain’s ability to function, even to process the smallest of information. I’ve been having trouble writing six-digit numbers on the top of each application. And normally I work faster than the worker next to me, but the past two weeks she’s been cranking out work three times faster than me.

It’s frustrating. I’ve been doing everything in my capacity to do to fight these headaches off. Everything. And no, I don’t want any helpful suggestions. But regardless, even with all the desperate measures I have been taking, they persist.

On top of it all, my endometriosis has decided to flare up at the same time. So I get double nausea, extreme abdominal cramps, persistent pelvic pain and other symptoms.

I’ve been in a lot of pain.

I take a lot of medications. For pain. I take medications that have no effect on people who do not have a specific type of pain disorder. And I take medications that people who are not in pain popularly take to get high. (I do not, for the record, take anything to get high myself.) And I put up with a lot of shit to continue taking one of few medications that works and that enables me to work.

(I guess I could give it up and therefore be putting up with less shit. But then I’d, you know, not be able to work. And for so long as I have the option to be able to work, I’m taking it. Because I may not even have that option forever. Situations change, bodies change, and bodies change how they react to medications over time. I’m doing what is necessary for myself and my family at this point in our lives.)

So, at work today.

I sit on the far side of the first floor of our building, along with all the other people working in my particular program, the people working on another program, and a couple stray general clerks across from all of us. The other program’s supervisor and one of the other program’s workers (OPS/OPW hereafter) were talking about a certain case, a woman who was being denied medication and needed help obtaining it. This was before lunch, it was a general talk in a work context, that is how to get the problem solved.

My husband and I went home for lunch, as we do regularly, given that we live less than five minutes from our workplace. It takes half the lunch period but it is worth the spoons because it makes the workday so much more bearable — two four-hour chunks rather than one long nine-hour one. We sit around, watch The People’s Court reruns, eat our lunch and laugh at the cats who get in silly, hyper, meddling moods around that time.

I returned from lunch, feeling a lot better having had a break from the fluorescent lighting and ambient noise of the HVAC system. And a few minutes after I got back, sitting next to the OPS scanning documents into the computer system, OPW wandered back over and began talking again about the client from before.

The medication? Oxycontin. Her doctor has been prescribing it to her for over 15 years.

And the conversation? Went like this. (As typed soon after in an email to my husband, as close as I could get to what they actually said, given how stunned and hurt I was while it was happening.)

OPW: do you watch house?
OPS: no not really
OPW: well he has some sort of leg injury, but he takes that other one, what is it? vicodin
OPS: uh huh
OPW: and they sent him to rehab, and he just had to find something to occupy his mind so he wouldn’t think about it
OPS: yeah they get addicted so easy
OPW: and now they put him on regular pain killers and he’s doing just fine
OPS: yeah a lot of the time tylenol or advil works just as well, people just want the high
OPW: exactly, and their doctors prescribe it to them and they hand it out to family members…

And the conversation went on like this for a couple minutes, with the two of them walking back and forth fetching printed documents, attending to the scanning etc.

I just… I’m not terribly private about my condition. I don’t bring it up, but if it’s relevant I talk about it. I do try to avoid telling my coworkers that I take narcotic medications (as opposed to just “medications”) but I have gone over it specifically with HR as it can be a security issue in some agencies.

I was sitting right there. OPW sits on the other side of me, and had to walk around me to get to where OPS was at the scanner. I was sitting right there.

They were talking about me.

They weren’t thinking of me, of course. They’d never make that connection. I’m young and thin and pretty enough. They know I work hard. Most of my office loves the hell out of me.

But if I had spoken up — rather than sitting there holding my breath trying not to cry — how would that opinion change? Would they start seeing me as lazy, as slacking off? Would they whisper about me every time I went to the water fountain for a drink? What was I taking? What was I doing with it? Would they start taking certain behaviors as symptomatic of addiction? If I passed too well one day, appearing to be just fine (to them; I am good at covering up my pain) — would they take that as evidence that I couldn’t actually be in pain and couldn’t really need that medication? And if I didn’t pass well one day — especially these days, when I’ve been stopped more than one time as someone remarks on how deathly pale I am and asks if I’m OK and tells me to take a break — would they see that resulting, not from my pain, but from the supposed addiction?

They were talking about me. They didn’t even know it. But I am that person on that medication. Pushing through the pain to keep working.

The difference is, Dr. House is a character.

I’m real.

And that woman. These were the attitudes of the people who were helping her resolve an issue. As much as I wish otherwise, workers do have some degree of latitude in deciding how they are going to approach a case, and can apply the law in different ways for different people, even if it appears pretty strict on paper.

I am that woman.

I have been there. I am there. I have to deal with unsympathetic figures in obtaining my treatment. Doctors, nurses, office staff, pharmacists, insurance reps, welfare reps, other reps. I have issues I have to call to have resolved. I have that person on the other line who’s promising me on the one hand to resolve the issue — but on the other hand …? How can I ever know?

I don’t know what was going on in this woman’s life. I don’t know if she’s dependent (there is a difference). I don’t know if she would be better off on another course of therapy. Or whether she’s tried all those other courses and they’ve given her awful side effects or they’re contraindicated given her particular condition or they’re unavailable to her due to income or access. I don’t know.

Maybe she’s abusing. Maybe she’s handing it out on the street corner.

Maybe she’s just like me. Just one person trying to power through this world as best she can. And this is the best way she’s found to do it.

Oct 28, 2009 NOTE FOR NEW VISITORS: Please visit this post first (it’s short). Thanks.

***

[The amazing abbyjean sent me annotations. Annotations! So now: Open Letter To Feministing With Links. We proceed.]

This includes the contributors and the commentariat.

We have a problem. We have had a problem for a long, long time.

You traffick in ableism. Your entire site reeks of it. I have spoken with many disabled feminists who find it impossible to read and participate in your community. They feel excluded. The culture is thick with unexamined ableism. We encounter common slurs and problematic cultural concepts at every turn, and are met with hostility when we bring it up. Some people have wasted energy on emailing you, requesting that you address it, so that they might safely participate in the community. You never bothered to respond. To any of them.

You’ve lost a lot of readers this way. But I’m sure, because that’s the way it usually goes, you lose less readers due to ableism than you gain due to same — because you never challenge their privilege, in fact defend it, passively and actively.

That’s nice for you and all, but the rest of us would, at best, like to play too. As for the worst — we would deeply appreciate it if you would stop deliberately (and don’t you dare say otherwise, you have heard our complaints and ignored them, making your actions deliberate) reinforcing a culture which marginalizes us, leaves us vulnerable to violence (including sexual violence), ostracization, institutionalization and death.¹

I viewed enough of this happening at your site — (years ago, when I was just getting into the feminist blogosphere; disappointingly, you haven’t changed a single bit in the intervening years) — that I never even bothered trying with your site. I’d love to have been able to. But your site has never felt like a safe space for me. Ever. Exactly the opposite. Your site has felt like a hostile and scary place to myself and other women.

W-O-M-E-N.

You can read, right? Spell it with me.

You cannot claim to care about my condition as a woman if you refuse to address the discrimination I face as a disabled woman.

As far as “what issues affect women”: I am a woman. Presumably, feminists care about the oppression women face.

But you cannot address the oppression I, a woman, face, without addressing the oppression so graciously given me on the basis of my disability.

For example, I face discrimination in the workplace. But if we are only to address the male-female pay gap, and ignore the obstacles I face because I am disabled, then you are not helping me as a woman. I am still left behind, still oppressed, as a woman. All you have done is alleviated the issues which affect you. Which means you aren’t helping women; you are helping healthy, abled women exclusively.

This is the basic framework I work from in my feminism. I am not helping women if I am not also out there addressing classism, transphobia, racism, homophobia, and all of the other oppressions that women face.

The reason “Sean Bell is a feminist issue” is because you must address the oppression which killed him to be able to address the oppression of women. If you cannot address that oppression — even though it affected a man this time — you cannot help the women who are also facing that oppression.

And if feminists are ok with not helping women on that level, then feminism isn’t about helping women, it is about helping white women. (me@tumblr)

And I am sick and fucking tired of having to explain this to the likes of all of you. If you are not there to help me in the problems I face because of my disability, you are not helping me as a woman. I am a whole person, not fragmented little bits. You have to help all of me to help any of me.

And if you aren’t all-in, for helping ALL of me, you are therefore declaring that you are only interested in helping ABLED WOMEN. You can cut out this bullshit about being “feminist,” as though you are working on behalf of “women.” Because you aren’t, at that point, working on the basis of gender: you are working on the basis of women with a certain ability status. Period.

A few days ago, meloukhia at this ain’t livin’ heard us complaining, and got sick of it herself. So she posted her Open Letter to Feministing and began promoting it. And it got some attention.

Apparently, Courtney has emailed her back, as of this writing. They are “in the generalities stage.”

I have absolutely zero interest in personally emailing with any of you, but I want to make sure people know that we — disabled feminists — aren’t stupid enough to be placated with a generic private apology. And I want you to know this. What it is that I, one particular disabled feminist, want from you.

1. Just posting about ableism-in-general, while a huge step for you (considering you never engage with disability in even a token capacity), IS NOT ENOUGH.²

2. Feminists have a long history of only ever speaking the dreaded d-word when it comes to reproductive rights, particularly (almost exclusively) the right to an abortion. Yeah, I know, you thought this would be easy. THAT WILL NOT BE ENOUGH.

3. As far as I’m concerned, you are dead to the cause if you never put up a post addressing your own ableism. Not ableism-in-general. THOSE POSTS ARE STILL NECESSARY. BUT THEY ARE NOT ENOUGH TO ANSWER OUR CRIES. You must put up a post examining your own personal ableism, and particularly the ableism you deliberately condone in your comments section.

In your comments section, a few disgusting, prejudiced, DANGEROUS memes are repeated with not an ounce of pushback:

* that health can be obtained by Doing The Right Things (eating right, exercising, being upper-class privileged enough to live the perfect little high-class life that is correlated with that definition of “health”) and that if you don’t Do The Right Things, any conditions that come up are Your Own Damn Fault, Don’t Come Crying To Us For Help

* attitudes expressed that fat people, smokers, and sick people should be paying more for healthcare because their illness is dragging the abled world down

* that disability is an awful tragedy and disabled people deserve only your pity, never your respect, and who knows why disabled people are segregated away in decrepit institutions, it couldn’t be connected to the way we regard disability as the end of meaningful life as we know it, nuh uh

* that having a disabled child would be such an abomination they must be screened out at all costs, and there is nothing at all problematic with this oh no oh no (DISCLAIMER, FOR GOD’S SAKE, I DO NOT PROPOSE LIMITING WOMEN’S REPRODUCTIVE FREEDOM, BUT I DO THINK YOUR PRIVILEGED ASSES NEED TO CONSIDER YOUR COMPLICITY IN OTHER PEOPLE’S SUFFERING) ³

* that Disability Is Objectively Bad, everyone knows that, duh, who would ever want a disability, of course life is going to be worse with one, and that is just because disability is (of course) inherently awful, and could never (of course) be because we make it worse by the way we treat disability[4.
* Even more frightening, the number of women who are on antidepressants ... why the hell are they having children anyway ... fuck if you can't cope with life, how the hell does one expect to raise a child! http://www.feministing.com/archives/005359.html#comment-47387

* I do think that for the sake of society, people who's severe disability roots from their genes should be prevented from reproduction. I'm not sure what that means, and I know the slippery slope that kind of thought can lead to, but I think somehow it's the most utilitarian thing to do. Not to put a blow against the I Am Sam or anything, but I think some people really don't have the capacity to raise their kids (certainly there are plenty of non-disabled parents who fit this description), but my main concern is that the children are more likely to have those same disabilities. I think society's attitude should be to respect and accept the disabled but not to encourage its increase. Certainly we don't want to always be making decisions for people who can't make them for themselves, right? http://www.feministing.com/archives/007889.html#comment-107733]

* words like “lame” and “retard” and “cripple” and “crazy” are totally ok to use — and their conceptual meanings as well — because disability is objectively bad so it makes sense to use something objectively bad to say that something else is bad, or because no one ever uses that word that way anymore (that I hear, because I as an abled person am the ultimate arbiter of how often certain things are said to certain people, the vast majority of whom I never encounter because they are segregated away from me) and it has lost its derogatory connotation, or that I have a cousin who’s retarded and I love him to death so that means I’m allowed to use the word because that totally eliminates my abled privilege, or it’s just too much of an imposition to change my language and have to lose that one concept to express that is based on harmful prejudice, or or…[5.
LAME

* God. Jennifer's body looks soooo lame. The stupidity dripping from the trailers is so overwhelming, I can't even imagine too many dumb and sexist stereotypical males going to see it. http://www.feministing.com/archives/017815.html#comment-298306

* lame. So fucking lame. http://www.feministing.com/archives/011318.html#comment-182734

* Samhita, 11/07: “Forget immigration, reproductive rights, health care or any other issue we feminists are reading up on for the upcoming election. It is all about getting a hot chick in the white house as first lady. Does that not count potential first dude, Bill? Forget you men.style.com, you are totally lame.

In that thread, someone raises the problem, and another commenter dismisses: “It's been so long since "lame" was used for people with disabilties that I really don't think it's an issue anymore. Besids, it's used as a synonym for "loser", not "defective" (which also isn't a synonym for people with disabilities anymore).” http://www.feministing.com/archives/008086.html#comment-114144

* 1/07, Courtney headlines an article “Can I Get a L-A-M-E”. again, someone calls it out in comments but no response from mods, although mods respond to other posts. http://www.feministing.com/archives/006368.html

* “LAME. Excuse me while I barf in the corner.” http://www.feministing.com/archives/015410.html

someone calls it out in comments and response: “Please don't spread prescriptivist poppycock on any site.” http://www.feministing.com/archives/015410.html#comment-257102

* “Lame-ass beer ads are a dime a dozen.” http://www.feministing.com/archives/017741.html

RETARDED

* Victoria Beckham is so retarded, I think she almost belongs in that shopping bag. http://www.feministing.com/archives/008985.html#comment-144542

* Commenter asks “Am I retarded, or can't you reverse a tubal ligation?”http://www.feministing.com/archives/007454.html#comment-93573

response is “No, you're not retarded. There are two types of ligations…” later in thread, commenter raises, no mod response though mods active in thread.

* One commenter uses the term: “It's like when you try to control a teenager and shelter them from reality - when they go into the real world, they often rebel and make a lot of retarded decisions.” http://www.feministing.com/archives/014575.html#comment-239116,
only response is another commenter pre-ridiculing any response: “Uh-oh, you said "retarded!" Get ready to duck the flying tomatoes! :P” http://www.feministing.com/archives/014575.html#comment-239125

* “Lindsay Lohan doesn't have curves like Marilyn Monroe did so to even do this shoot was a retarded idea in the first place.” http://www.feministing.com/archives/008637.html

* “So still being able to marry but being offended by something has the same impact as two gay people not being able to marry? What are they, retarded?” http://www.feministing.com/archives/011095.html#comment-179668

CRIPPLE

* “but the idea of marriage cripples my aspirations in life.”  http://community.feministing.com/2009/07/what-to-do-when-you-want-to-ma.html#comment-282211

* “When you use satire against powerless people, as Limbaugh does, it is not only cruel, it’s profoundly vulgar. It is like kicking a cripple.” http://www.feministing.com/archives/006861.html#comment-73327

* Canadian reactions are a little different from American ones, very negative or hostile actions can really ruin you (Do not make fun of a cripple, or call someone a Kitten Eater, for instance). http://community.feministing.com/2009/04/women-prefer-polite-politician.html#comment-244108

* “I'm not sure this guy built a robot just to sexually abuse. I think he's an emotionally crippled individual who can't relate to the opposite sex.” http://www.feministing.com/archives/012670.html

CRAZY

* Jessica titles post “Fun with feminist flickr (crazy billboard edition)” http://www.feministing.com/archives/006229.html

* Vanessa titles post “Randall Terry’s Crazy Road Show” http://www.feministing.com/archives/017413.html

* Vanessa titles post “Sen. Tom Coburn's chief of staff reaches new level of crazy” http://www.feministing.com/archives/017876.html

* Jessica titles post “What Double Standards Drive you Crazy?” http://www.feministing.com/archives/007551.html

* “I would be all for the feminists for life if they weren't so schizophrenic about their positions. They won't take a position on birth control but they don't want women to have abortions.” http://www.feministing.com/archives/002804.html#comment-13883

(amandaw's note: good Lord, I can only imagine what you'd find if you searched for "insane" "loony/loonytunes/etc." "unhinged" "psycho" and so forth - again, it's not just the word that's the problem)]

* that if one person, especially a person who has a disability, says something isn’t hurtful or problematic, you can call the whole thing off, because all those other people who DO have a problem with it and have suffered the consequences of it just cease to exist, poof!

* the sense of supremacy over others because you are (choose any or none, thin, abled, upper class, pretty, educated) and fully abled, which makes you totes better than everyone else, but you never CONSCIOUSLY think that so it’s totally ok that you still avoid Those People whenever possible because they scare you or squick you out, almost like they make you uncomfortable realizing your position in life is never as certain as you like to pretend it is? — nah, couldn’t be, just because they’re weird and gross and like, different and stuff

That’s just to start.

This is all shit that goes down in your comments regularly. And it makes women (spell it with me, W-O-M-E-N) feel uncomfortable and unwelcome, especially when they speak up and have other people jump back defending the exclusionary language and concepts, stating that they don’t have a problem with it and therefore there is no problem with it, saying or implying that the challenger must be oversensitive, have an agenda, looking for things to get angry about, or just doesn’t understand that the person committing the exclusionary behavior is a Good Person and that should be good enough.

Well. It’s not good enough. You are not good enough. Your whole site is not good enough. It is going to take some major changes. You are going to have to put yourself on the line, do some serious reading, reflecting, digesting, and actually change how you think and act (and not just by saying “I believe it now!” — we aren’t stupid, we can tell when there has been a true change). You are going to have to criticize yourself and your fellow writers. And –  this is the fun part –

4. you are going to have to change your comment section. You will moderate and fight back against ableism (which you will recognize, because you have actually been making an effort to learn more than you do now, right?) from your own commenters. You will delete offensive comments and tell commenters to stay the fuck in line. And not just once. Every time. EVERY FUCKING TIME.

And don’t you dare cry that it takes up so much time. Because you’re already spending that time watching your space to protect the abled women in it.

We would love it if you would give us the same fucking courtesy.

See also: meloukhia: Open Letter to Feministing; Anna: Dear Feministing: Answer your email; Annaham: Confessions of a Reluctant Young White Feminist; Anna again: Anti-Oppression Linkspam; Chally: Feminism that doesn’t advance women is no feminism at all.

All annotations abbyjean’s except where noted in parenthesis.

Melissa wrote “The Terrible Bargain We Have Regretfully Struck,” which resonated deeply with many in the feminist blogosphere:

Not every man does all of these things, or even most of them, and certainly not all the time. But it only takes one, randomly and occasionally, exploding in a shower of cartoon stars like an unexpected punch in the nose, to send me staggering sideways, wondering what just happened.

Well. I certainly didn’t see that coming…

These things, they are not the habits of deliberately, connivingly cruel men. They are, in fact, the habits of the men in this world I love quite a lot.

All of whom have given me reason to mistrust them, to use my distrust as a self-protection mechanism, as an essential tool to get through every day, because I never know when I might next get knocked off-kilter with something that puts me in the position, once again, of choosing between my dignity and the serenity of our relationship.

Swallow shit, or ruin the entire afternoon?

Now a couple months later, she has followed with a clarifying piece, “The Bargain, and Its Alternative.” And this post struck me much more deeply than the first, because in this one, Liss turns around to the other side of the bargain — the behavior of the privileged person in question. And remember, here, that Liss is speaking mainly about men she loves, men who are important to her; her husband, father, closest friends — not about some random jerk who presumably “doesn’t matter” when he treats her poorly — but those closest men who on occasion say or do something that really stings, that brings to mind the power imbalance hovering over them:

Even though, intellectually, he knows I’m not accusing him of deliberate maliciousness, and knows I understand he doesn’t intend to hurt me, and knows I’m telling him because I want to be able to trust him, and because I already do, and knows down to his very bones that I wouldn’t even bother if I didn’t already believe and know him to be decent and good and capable of even more, despite all that, being challenged on his male privilege, when it’s such a rare occurrence, makes him viscerally defensive.

And it’s taken a good long time for him to wrap his head around the fact that another part of that privilege is having control over which direction we go when he says/does something sexist and I point it out to him.

There are infinite possibilities of how to react: He could be defensive. He could refuse to hear me. He could try to insist I judge him on his intent, rather than the actual effect of his words/actions. He could accuse me of imagining things. He could imply that I’m crazy. He could turn it around on me. He could behave belligerently, childishly, furiously. He could storm out. He could stand in one place and stomp his feet. He could shout. He could demand a divorce. He could buy a one-way ticket to Rio. He could throw spaghetti. He could challenge me to a duel.

Or he can listen. Take on board what I’m saying and acknowledge how I feel. And then we can get on with the day.

It is a privilege that he gets to decide. And it is a privilege I recognize, because it is also operative for me, when my privilege is challenged—my white privilege, my straight privilege, my cis privilege. I have the same privilege, just in different situations.

Listen, or ruin the entire afternoon?

Here, it is not the unprivileged person’s responsibility; it is not on hir shoulders to decide whether to speak out, and if so, how. It is, instead, the privileged person’s responsibility to decide how sie will react to the challenge — no matter how phrased or presented, whether meek or forceful, whether diplomatic or accusatory — it is on hir shoulders to determine the course of the rest of the afternoon. It is hir privilege to decide.

Until our focus in a conflict turns first to the nature of the privileged party’s reaction and not the unprivileged party’s challenge, we are going to have a very difficult time righting this unjust world.