I’ve said and done things that hurt friends, hurt enemies, hurt people I don’t even know. And no matter who it is, it matters.

I just want to acknowledge that yes, I have heard your criticisms. And yes, people have made a lot of important points in response to my mistakes. And yes, I am trying my best to listen, to take it to heart, and incorporate these perspectives into my work and interactions going forward.

I won’t always do it perfectly, but dammit. I want to try.

These things sit on my shoulders for a long time. I don’t want to keep doing the same fucked-up things over and over again. If I have to do them at all, I’d at least like to use them as a kick to my own ass to actively improve my approach to writing and conversing and criticizing and playing and living.

I appreciate it that people feel comfortable enough, and see value in, raising objections or even just offering refinements. It makes our community more vibrant and our work more just.

I’ll keep trying to be better and I hope you’ll keep working with me.

You’ve heard the term “choice feminism” right? Usually used derisively by a person who is arguing: Just because a woman makes a choice does not make it a feminist choice, we have to be able to examine issues on a systemic rather than individual level, some choices that individual feels are good for them are actually going to be bad for the group as a whole and even bad for that individual when systemic issues are taken into consideration.

Here’s what annoys me about this argument. It always comes from the perspective of a white, cisgendered, currently nondisabled, middle-to-upper-class, heteronormative, and otherwise socially privileged person.

That doesn’t mean that it’s that kind of person saying it: it means that the very idea comes from a very specific perspective, in response to a very specific situation.

And not all of us are in that same situation.

The assumption, when this person says “we have to be able to make some sort of systemic analysis and that will mean some choices have to be wrong” they are almost always assuming some specific things.

* Women have been historically locked in their homes tending their houses and families, and larger society pushes against women’s ability to participate in the workforce, and women should participate in the workforce at the highest level possible.

* Women are oversexualized, and that sexualization takes specific forms, such as high heels, lipstick, makeup, dresses.

* Women are stereotyped as demure and submissive, soft and giving, caring and intuitive.

* Women are forced into roles as family carers, encouraged to have as many children as possible and to be the primary carer to those children, stereotyped as having special natural ability to raise children.

That’s just a few.

Here’s the thing. Everything I just said above about “women”? Isn’t true for women. Rather, it is true for white women. Or cisgendered women. Or nondisabled women. It is not true for women as a class.

Yet we continually operate on the assumption that it is!

But ask some other women, sometime, what their experience has been. Many poor and lower-class women, for example, would gladly tell you that they have never had a whiff of an option to stay home with their children — they’ve been out there washing the rich women’s drawers, or sewing them in the first place, so that they can afford dinner for their family a few days out of the week. Ask a black woman about being a nanny and wet nurse. Ask both of those women, and a few mentally or physically disabled women, about when they had their children taken away from them or weren’t allowed to spend any time with them at all (apart from the time they spent cleaning up the messes of the children of those rich/white/nondisabled women they worked for).

Ask a little black or brown girl in some poor neighborhoods about being expected to be virginal (a concept that depends on whiteness from the very beginning) until her wedding day. She’ll probably laugh at you. She’s been continually harassed, abused and assaulted since age six. She’s portrayed in larger culture as an unsexual unwoman and yet every man who crosses her path sees her as a potent sexual opportunity.

Ask the little girl with developmental disabilities about sex sometime, too. No one ever sees fit to give her any information on the subject. They fight to have her sterilized, or even be forced with serious drugs and surgical interventions to stay in a prepubescent state for the rest of her life, so that no one will ever have to deal with the messy proposition of a menstruating or pregnant r*t*rd girl. And if she does get pregnant, that baby had better be aborted immediately, because she could never, ever be anything but an utter failure of a parent. Sterilization is proposed precisely so that she will never get pregnant even if she is sexually assaulted by carers — precisely because everyone knows that she will be.

Ask the visibly disabled woman about being expected to dress up in skirts and high-heeled shoes. Everybody around her will wince at the thought of her in form-fitting, skin-showing clothing. Because, you know, “women” are oversexualized in that way. Ask her about those super-special parenting powers she supposedly has. Everybody around her will bristle at the thought of her having primary responsibility over a child. Because, you know, “women” are stereotyped as having those super-special powers.

All of these girls and women live very different lives as girls and women. The fact that they are marginalized as girls and women is one thing they share in common. But the ways in which they are marginalized are different!

A white woman is marginalized in a different way than a Latina woman is. And a Latina woman is marginalized in a different way than an indigenous woman! A nondisabled woman is marginalized in a different way than a paraplegic woman is… and a paraplegic woman is marginalized in a different way than a bipolar woman is. An upper-middle-class woman in urban New York is marginalized in a different way than a poor woman in urban New York — and a poor woman in New York is marginalized in a different way than a poor woman in Indiana.

There are different mechanisms of marginalization for different types of people — and the greater your difference from the presumed default person, the more different your type of marginalization looks than the privileged-other-than-gender woman.

And that means that what affects you, how it affects you, what issues are important to you, what is good for you and what is bad for you, is different for different sorts of people.

So we cannot, cannot assume, if we agree that “choice feminism” is misguided (and indeed, I believe that straw-ideology would be misguided — well, surely many people think that way, but that is not usually the argument that is being put forth in these discussions), that high heels, lipstick, being submissive, foregoing paid work to raise children, etc. etc. are clearly problematic under a systemic feminist analysis. Because they might be clearly problematic for one set of women — but they are not clearly problematic for the set of all women.

Actually, sensible shoes and baggy desexualized clothing might be clearly problematic for a different set of women who have been historically deprived of their right to any sexuality. Actually, full-time participation in the paid workforce might be clearly problematic for a different set of women who have already been working outside the home for centuries and have historically been denied the right to raise their own children. Actually, being aggressive and dominating or even merely appearing assertive and self-confident might be clearly problematic for a different set of women who are culturally typed as bossy, loud, demanding and unyielding and rarely read as anything but.

Given all of this, I am distrustful of anyone who argues against “choice feminism” or the idea that “any choice is a good choice for that person” because that is not the point. When people protest as you judge their choices against your standards, they are not claiming that no choice could ever be problematic. They are protesting because you are applying the standard of your particular experience against their very different experience. They are protesting because you are assuming that your experience is universal. They are protesting because you are invalidating their own experience, their own feelings and thoughts and desires, in the process. They are protesting because you are objectifying them. And it feels pretty shitty to be objectified.

(Cross-posted at FWD/Forward.)

I more-or-less grew up on the internet. I’ve been part of a variety of online communities. You definitely start to notice some commonalities. I think I’ve pegged the median life of an internet community around three years: after that time, drifting sets in, or conflicts create divisions, or original members have moved on and it feels like the essence of the community went with them, and so on. And there’s often one or two people from the group that you keep contact with over the long run.

I’ve gained so much from my time online. I’ve connected with some amazing people. I’ve made lasting friends. I’ve had space to grow, to explore. Making those connections online as a young teen actually helped me learn to socialize offline (contrary to the panic of traditional-media sorts as new media grows more prominent and the new generations make use of the technology available to them). I still had access to a network of support when I found myself unable to leave the home or socialize in-person. And access to information, the opportunity to learn things that might never have been in my reach otherwise — from sexual education to photography and design concepts to politics and social awareness. And I needn’t go into detail, I think, for most of my readers to understand the value of activism no matter where it happens.

For all the internet has to offer, it can also be a dangerous place. And I’ve watched it happen in a number of communities I was a part of. There are all kinds of people out there, and not all of them with a sense of understanding or respect for boundaries. And it only takes one person, out of hundred or thousands, to change the shape of the community they target.

It can happen in many ways. Some of you might remember that I met my husband online. The community we met in was a close-knit group of friends. Every year we planned a meeting, choosing a place close to some percentage of the group, and would go out together to museums, restaurants, theme parks, local/historical points of interest, and so on. We associated with one another with our real identities, for the most part. As far as we knew. Until one member faked his own death to us, for reasons unknown, and several people who had grown very close to him fell out of the community as a result.

There was another community, a much larger one, where members sorted themselves into sub-groups of friends. And one group was dominated by this particular woman. She made a point to be as inflammatory as possible. She wanted to see drama. And she would target any individual who raised her ire (whether they spoke against her or just happened to be in her way at the moment). Target with harsh words, target with customized insults, target with twisted stories or speculations about the person, designed to exploit their vulnerabilities, displaying knowledge of the target and hir situation — she had done her research — that was as much a personal violation as the infectious lies that she weaved into her attacks.

I’ve seen this happen in multiple communities. These toxic individuals who strongarm their way into prominence. In the beginning they are boisterous but nonthreatening. But their loud, commanding style immediately sets them into a dominant position, no matter how few people know them at first. They use their dominant position to reward people who make a show of flattering them. They make connections early, carefully cultivating supporters, rewarding them with insider status if they show themselves willing to play by the dominator’s rules.

This toxic person begins to gain prominence, in part because sie begins to sew conflict. Sometimes it is subtle, not overt or obviously conflict-seeking, but rather setting hirself up to be wronged, or finding a sensitive issue to exploit. But sometimes it is blatant: outright picking a fight with other people, seeking out enemies. Either way, sie becomes a person that no one can any longer ignore. Sie forces hir way into a place of importance and relevance to all community members; they have to pay attention, because otherwise they might stumble in hir path, or break one of hir rules inadvertantly, and suddenly find themselves in the middle of a shitstorm.

This is the point at which the shape of the community changes: this person is terrorizing the community. Hir supporters are no longer simply part of another sub-group of friends, but now become enforcers. They cannot believe that anyone would speak ill of this person who has treated them so well, and they make sure that anyone who does so is promptly punished. They make sure that no one breaks the dominator’s rules; they pick fights with others in an attempt to prove their loyalty to the dominator.

The really disturbing part is when the big fights break out: anyone who speaks out against this toxic person is swarmed. The toxic person may or may not be personally involved. Sometimes, sie sits back as hir supporters do the work of harassing the dissident, picking at all their flaws, manufacturing them if need be. But sometimes, sie will get involved — seeking this person’s greatest vulnerabilities, and exposing to all observers — knowing that sie does not need to say the nastiest things — someone else will step in and do the dirty work for hir.

And people get the message. It only takes one time, although it may happen well more than just once. People see what the consequences are for speaking out against abuse. And people, quite rightly, would rather protect themselves — even if they feel brave enough to speak up, they can see already that it’s not enough to make it stop. They might have seen a great many people speak out against the abuse, and each of them individually targeted for attack, and the dominator keeping hir place of influence in the aftermath. People may not be happy, anymore, but sie still holds this power.

This is highly damaging in any community. I’ve watched it happen, watched how the dynamics of the community change, observed the consequences of pushback. In one particularly extreme incident, the bully actually researched the real-life identity of an enemy and called around to anyone she could find, including the target’s in-laws and boss, with a fabricated story that was just plausible enough to sew seeds of doubt, and the target actually saw consequences at work because of it.

But even when the abuse is confined to the online community, it can have real effect. I’m not a person who believes that the internet is a somehow less-important space than physical proximity. We are all real people, and we are having real interactions and making real connections, medium regardless. Harmful behavior is harmful behavior, no matter how it is facilitated. And abuse is no less abuse because the abuser isn’t sitting in front of you.

To the contrary: the invasion of space, the assault on a person’s autonomy and integrity, the violation of a person’s freedom of association, are just as real when they happen over a data line. These spaces are important. They might be the only space you can interact with distant friends. They might be the only space you can interact at all, because you are dealing with disability or poverty that makes leaving the house (or bed) and socializing in person difficult or impossible. (Which is why it’s frustrating when people dismiss online spaces as somehow not-as-real or not-as-important.)

When I’m part of a community that houses one of these bullies, I live in fear of the person ever being clued in to my existence, knowing that I could not handle being targeted like that. I have had to leave communities I cared deeply about because I couldn’t keep subjecting myself to those conditions. I have had to break connections with people I cared deeply about because they had some connection to the abuser.

And not just with online friends.

After I moved to Pittsburgh three years ago, I lost contact with every friend I had in California, my closest, deepest soul-mates (in a BFF sense). You see, my mother started stalking me online, seeking out every social media account she could find, invading every space she could find me in. So I left them. All of them. For two straight years I never logged in to my Myspace or Facebook accounts because she would be able to see that I had; certainly I couldn’t have interacted with anybody on them because she would find out. The friends whose emails I didn’t have before, I lost contact with. The friends whose other contact information I did have were the ones in my home-town social circle — the social circle my mother had infiltrated. So now, 2500 miles away in a place I’d never lived, knowing no one but my husband and his immediate family, I was completely isolated from the only support system I had.

Abuse has real ramifications. On real people. No matter where it is carried out.

When it comes to online spaces, some people may not see much of a problem. It doesn’t feel threatening to them. Annoying, maybe. But not threatening. And they don’t see why people can’t just ignore it. It’s not that hard to get past, for them.

But there are some people who can’t just ignore it. People who have been through this before. People who have been primed by previous abusers, primed to respond to certain tactics. For these people, even if they are not the center of a conflict, just being exposed to those same dynamics again can be incredibly harmful. It might not be the same person, the same place, the same situation — but the same patterns are playing out, and it’s not just that you have flash-backs to previous events; it’s the way you return to the state of mind you were in during the previous abuse, the way your patterns of thought go back to how they were then, the way you react to things restored to its previous setting. You might find yourself becoming highly self-critical, questioning your own experience of things, doubting your knowledge of yourself and what happened. You might find the same problems with self-loathing come rushing back. You might be wondering whether you really deserve it. You might start to see yourself as a burden again, highly aware of all the ways you drag other people down.

You can’t just ignore it away. You can’t just Think Positive your way out of it. You can’t just tell yourself that all these thoughts are untrue; no matter how well you understand something intellectually, there is something about the human psyche that still follows those same self-destructive emotional patterns when exposed to the same kind of situation that originally set them in place.

Just because you don’t actually feel like the community bully is going to find you at your workplace doesn’t mean hir actions aren’t having real effect on you — no matter how much you fight it.

Survivors of abuse are everywhere. And they are not always known as such. They are often invisible. And the consequences they suffer are not always apparent to outside observers.

What disturbs me as I watch this play out in yet another community I care about deeply is that this community is different. It’s not just about making friends or sharpening your debate skills or sharing memes with each other. This is a community with a purpose, and it has real effect. Real change is happening because of the conversations that we have with one another, puzzling out the direction of a movement, examining systems and learning how to change them, working with one another to advance the theory behind the movement, to find relevance, to find need, and to fill it. A lot of people have been introduced to concepts they might never have encountered without a thriving network of communities dedicated to common purposes. And, as a believer in bottom-up change, I fully believe that the influence of this community will spread.

And maybe it’s naive of me to expect better, but I rather do expect that groups of people centered around advocacy and activism would have some measure of awareness of abuse, how it works, how devastating it can be to the person/people targeted. I would definitely expect many of these communities to know that the abuser has often made sure to become in some way valuable or indispensable to the larger community, doing good things for other people, even as they do such harm to others. How often do people rally around an accused rapist and close in on the accuser, because they know what a good person the accused is and what good they are doing in [other area], so there’s no way they could be capable of something so heinous, and anybody who suggests something so patently ridiculous must have some sort of insidious motive…

You will see similar narratives play out in online communities — often without even the precept of an accusation. It is not the target who (publicly) initiates the conflict, in this case — the target may have been minding hir own business — but the abuser. All the abuser needs is a slightly modified version of reality — just plausible enough that supporters/enforcers and passers-by don’t bother to check for accuracy, but instead go on the abuser’s version of events — but just twisted enough to set up the target for harassment and humiliation, just something enough to suggest salacious details (real or manufactured) that a motivated supporter might dig up about the target, and just set up in such a way that any way the target might defend hirself would only create more embarrassment or incite escalation.

This is called manipulation.

What is most frustrating is that there are people who know that something is wrong here, people who are seeing red flags, but rather than choosing to back out of the whole conflict, they step in to question the target. Because maybe there are personal issues between the abuser and the target, they figure, but on the merits (as posited by the abuser), doesn’t the bully have a point? And then they unquestioningly accept the abuser’s terms of engagement, imposing those terms on the larger conversation, forcing the target to either engage on the abuser’s terms or not at all — which, of course, sets the target up for failure. And the conversation may not have proceeded on the abuser’s terms without the intervener’s assistance.

This is called enabling.

These people are willingly being used as tools. They are allowing themselves to be manipulated, for what reason I can only guess: sometimes, for the approval of the dominating person, for the points they win by staying on the right side of the conflict (“right” as in most dominant), or maybe they’ve had conflict with the target before too. Maybe there are other reasons, reasons I don’t understand right now, that aren’t as malignant in nature, even as they have a negative effect.

But it’s especially awful, when it happens that way — because it hurts so much worse coming from the innocent bystander, the person who had previously been a friend — it cuts so much deeper when it is coming from a person who generally acts in good faith, a person who generally acts with respect.

The target, then, is isolated: the people who see what is going on are too afraid to speak up, knowing that the consequences of showing any support for the target are having some of that scrutiny diverted their way. And it is understandable to protect oneself in that case, especially when past incidents have shown that even a great many people speaking up against the abuse cannot break down the power structure that the abuser has built.

And that is why the enforcers (whether willing or oblivious) are so frustrating. Because they are the ones who are defending that power structure. They are the ones who are making sure that even when the vast majority of the community is unhappy with the state of things, they cannot wrest back control of their space. The abuser, by hirself, could not win against an entire community that is sick and tired of hir actions. But when the abuser “has a point” — “does so much good” — when people would rather stay willfully ignorant to the structure they are reinforcing as they use it for their own benefit, because any position of influence is worth it because they would use it for good things –

And the system forges on.

How many voices have been silenced by this system we so casually reinforce?

How many people have been intimidated out of writing, building, working within the community?

The answer isn’t zero.

I’ve watched enough of these conflicts now to have lost count of the people who did speak up, who bore the consequences of doing so, and whose voices disappeared entirely after the storm passed. I’ve lost count of the people who became targets, and the campaign was a success, the person humiliated, and even when attention turned elsewhere they were too scared, too depressed or burned out, questioning whether they could ever contribute anything valuable — their voices quieted.

And there is no way to count the people who were observing silently, who might have joined the community, adding their voice to the conversation, contributing valuable perspectives and insights — no matter how small their circle of influence — who were too scared, having witnessed what can happen if they inadvertently step in the path of the wrong person — who decided it wasn’t worth the risk.

Again, this is devastating in any community. But particularly in this one — a community where we want people to use their voices — we want a diversity of perspective — we want a high degree of participation. This is a community where the entire point is to listen to these voices, and to engage with one another, to build upon each other — and no matter how small the voice, no matter how unknown the contribution — it still matters. A great diversity of small contributions makes a stronger, more stable foundation for a movement.

Every little bit is just as important as the next. And the higher degree of participation you have within a group — whatever commonality they share — the more likely the movement is to actually better their position in society, in life. The more you discourage participation, the more the movement becomes dominated by a few competing leaders. And the fewer people participating, the less relevant the movement becomes, for lack of a diversity of knowledge and perspective. The fewer people participating, the more the faults of the few leaders matter. And the more likely the movement is to eat itself inside out.

I don’t trust that it will make much of a difference, just me writing on my little blog. Especially when I am too fucking scared to name names. Especially when I already spent two days suicidal last week, and still don’t know whether I feel up to meaningful participation in this community going forward. Especially if that scrutiny comes back. I’m being fairly risky, writing about it outright like this. And it’s my own safety that I’m risking. And if I find myself targeted again, I might have to pull out of yet another community because of it.

But I will mourn this one a fair bit more. Because it’s more than friends lost.

It’s purpose.

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.)

Yeah. I can be. I get angry.

I never used to. Ask my best friend. He’ll tell you. I was an appeaser. I was someone who was always sweet, always accommodating, always ready to be the mediator in a conflict, trying to reason with both sides, trying to placate the opposite party, making sure I never, ever said anything rudely, shortly, bruskly, or in any way that might put off the other party.

I still do that sometimes. When I have the time, energy and inclination.

But I don’t have time or energy anymore. Period. I have twenty things to do every day and only enough spoons for four of them. And that’s the basics: shower, prepare food, work (oh God, work), feed the cats, pay the bills, get ready for bed.

I participate in this community to varying extents at different times, depending on my time, energy and inclination. Sometimes I spend “spoons” here when I should be spending them watching hockey with my husband, or getting that extra half hour of sleep so I won’t fall over at work tomorrow. Sometimes I just have spare time and this is where I choose to spend it.

I feel like I can learn something here and also teach something here. I can do something. Make something happen. Be effective. Even if I only affect three people. Three is more than I would affect watching daytime court TV shows.

I don’t have much to spend here. I never do. What I want to be able to do is spend time researching, considering, organizing, compiling, refining, presenting. I want to be able to do more neutral-tone, resourced, annotated type posts.

I want to be able to profile the CCA. To explain what its goals are and why it is needed. To explain what is happening with it (currently, it’s dead because the current session of Congress is almost over) and what we can do to move it forward (right now, the first thing we can do is raise awareness of it so that more people can push for it because it will continue to go nowhere if the only grassroots support it has is from the likes of ADAPT).

Right now? I do not have the energy for that. Or the time. No matter how much inclination I have.

In the meantime, I watch the way things go in this community that I am a part of. And sometimes, the way things go makes me angry, as I watch it and it continues, over and over, to follow the same patterns, even as people raise their voice and point out the problems — and sometimes get shouted down for it — even as people demonstrate how it might go differently — and are summarily ignored by the people who hold the power in this community — and basically consigned to their corner, where they will continue to do the hard work they are dedicated to (and sometimes burn out because there is so much to be done and so little support) while nobody knows about it, because of a combination of a) the people with the power/audience don’t see fit to tell anyone or direct anyone their way or hell, maybe pick up and help out with some of that workload themselves? and b) the audience themselves don’t have the inclination to seek out the cornered-folks themselves, if they even have the inkling that they exist (because nobody is omniscient).

And you know what? That does make me angry.

So maybe I profile the CCA. And people who care about disability already learn about it (if they didn’t already know). And, because it isn’t “a women’s issue,” or because it doesn’t affect them directly so they don’t quite feel the same urgency, or because the culture is such that non-abled priorities are devalued so it ends up so far down the list of things to get to that it will never get gotten-to … feminist bloggers don’t say anything about it.

And … ?

So I get angry, and I wish that those bigger feminist bloggers would pick up on it, because it is a women’s issue, it does affect a great many people quite seriously, and it is something that they could make a serious difference with if they were to pick up on it, because it quite desparately needs a wider base of support.

And maybe I go the plaintive, appeasing, email-or-post-with-a-”Please-will-you-address-this?”-plea. Because that would be less offensive. (More effective? I don’t think so. I don’t think either way is more effective than the other, in the end: maybe you get people angry at you when you show anger with them, but maybe you’re also quite likely to be completely overlooked if you don’t get someone’s attention — because the whole problem is that they aren’t paying attention to you as you’re doing things the “right” way!)

Or maybe, it is an injustice that this issue ends up ignored by abled-feminist leaders, and it is legitimate to be angry about that, and it is legitimate to call them out on it.

Maybe, they didn’t know about it. That’s just how life goes. But maybe, the reason they don’t know about it is because of the systemic devaluation of non-dominant priorities. Maybe, the reason they don’t know about it is because they are continuing to — sometimes unconsciously, sometimes consciously — value their concerns over the concerns of people not like them. And passing over articles that detail issues that profoundly affect women because they don’t affect women like them. Don’t kid yourself and say that’s not why: they didn’t sit there and think to themselves while curling their moustaches, “Ha ha! These women are not like me, so they can go jump in a river for all I care! Stupak is more important!” But they just didn’t see the relevance — because our culture devalues disabled concerns!

That is what I am trying to change!

And one way to do that is to point out to people when they make those value judgments! Even in error! Even unintentionally! Because intentional or not, women are still being forced into institutions because of it!

Can I get a little angry about that sometimes?

Don’t you think it points out the root problem fairly effectively to point out that subconscious devaluation rather than just profiling the legislation at issue? Isn’t that also a valid problem to point out?

In general: when I’m short on time and energy, I’m a lot likelier to be short in response, too. I’m a lot likelier to just spit out my point rather than trying to go back, pad things with explanations of why and disclaimers about how I know you aren’t a Bad Person and reaching out my hand to hold yours through the process. Sometimes I feel like doing that. Sometimes that’s a valuable thing to do.

But it’s not always the most effective thing to do. And either way, it’s not what should be required of someone — I am a woman with a disability, remember — before they can point out that someone’s stepped on their toes.

Sometimes I’m mean.

I wish I weren’t mean as often as I am. And sometimes I slip up.

But that doesn’t mean that it’s never acceptable, or effective, to be mean. That sometimes, being mean isn’t what is merited given the situation.

I will continue to engage with this community to the extent and in the manner that I choose. If you don’t like my style, that’s OK. Not every person is required to be compatible with every other person’s style of communication. There are other people doing similar work without my sometimes-rude bent on it. I encourage you to seek them out. You are entitled to engage to the extent and in the manner you choose.

But please do not try to attack the legitimacy of this style altogether. Because it is a valid style, a sometimes effective style, and a needed style. We need all sorts of people to make this movement work. We need all sorts of tactics. We need people who are willing to kick a few people in the ass. And we need people who are willing to hold hands and guide gently. And we need people who can explain the simple facts. And we need people who can pull those facts apart and figure out what they might mean.

We’ve all got different roles. This is mine. If you are not comfortable engaging with this style, OK. Engage elsewhere. But don’t tell me to stop engaging. Because I refuse, absolutely refuse to dial back on calling people out for doing shit that is ultimately harmful.

There are some very important tasks at hand, and I’m willing to do some of the work. The work that I can do. It might not be much work, or the most effective work, but it’s what I can do, and it’s still something to help get these very important things done.

Don’t downplay the importance of that. Don’t even.

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 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.

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.

Of course, this is outrageous. Why should a woman who has been beaten by some asshole be denied health care coverage? It isn’t fair.

But there’s something wrong here. And not just with this discriminatory practice — but with the people breathlessly reporting it.

Because, you see, it is being reported, not as:

Pre-Existing Condition Exclusions Are Morally Wrong, but as

How Dare They Treat DV Victims and Mothers the Same Way They Treat Women with Depression, Diabetes and Cancer!

It is being reported as different from “normal” pre-existing condition exclusions. It is being reported as being especially wrong. As being worse. A true moral violation, taking things to a new level.

But why?

Here’s the thing. Insurance companies refuse coverage to people with pre-existing conditions (anything from asthma to leukemia) because they know these people will be highly likely to incur greater costs than healthy patients. The entire rationale for excluding them is because they cost more money.

If you have had a C-section once, you are much more likely to end up having another one if you ever give birth again. If you have a history of domestic violence, you might end up with an abusive partner again, and end up needing care.

Yeah, it’s complete bullshit that these people would be refused health care. It’s downright immoral.

But why is it especially immoral to refuse health care to these women — but not to women with osteoporosis or an anxiety disorder or back pain? Or Ehler-Danlos Syndrome or food allergies or heart disease or lung cancer?

How is it any different?

Victims of domestic violence don’t deserve to suffer consequences for something that is not their fault. This is truth. It contributes to the very popular cultural myth that victims are somehow to blame for the abuse they suffer — that they must have done something to provoke it, or that they should have left, etc. All this stuff is highly damaging.

But that doesn’t make it different than telling a woman with lung cancer that she can’t have care because her disease is somehow her fault. Which contributes to the very popular cultural myth that people with medical conditions are somehow to blame for them — that they must have done something to earn them, that it’s their own fault they ended up that way, and therefore they lose rights to certain things because they are inflicting the costs of their mistakes on the rest of us.

Because if you haven’t done anything wrong, you won’t ever end up sick. If you do end up sick, there must be something you did wrong.

Maybe that woman smoked. And maybe that other woman slapped her boyfriend first. And that woman who was raped wore a short skirt and flirted with the man first. That does not make this violation her fault. This is basic feminist theory. “Blaming the victim.”

Health care is a human right. We all deserve basic health care that respects a person’s dignity and integrity and humanity.

So why are these things different? Especially outrageous?

I can’t identify any reason except one.

Because they apply to healthy women.

It’s understandable why health insurance companies would refuse care to women with arthritis. It makes sense that they would deny care to women with psychiatric disorders.

Because we, as a society, think it is OK to deny quality of life and societal access to people with medical conditions, disabilities and chronic illnesses. We have determined that it makes sense to discriminate against them. We get why these things are done. And they’re done to those people. Over there. Not to me and mine.

But C-sections? Why, one-third of mothers in the US will have a C-section instead of a vaginal birth! That affects me and mine. Therefore, it is especially outrageous — that we would be treated like we treat them.

Oh, but that’s not how you think?

Really?

What justification is there for acting as though these practices are any worse than the practice of denying coverage to women who have lupus?

There isn’t any that isn’t rooted in a deeply ableist bias.

How about we get outraged by the fact that there is any such thing as a pre-existing condition exclusion at all? I can get behind you on that one.

***

Allow me to indulge in a little bit of inside-hockey.

Hockey is a very physical sport. Part of this sport is “checking” or “hitting” – basically running into an opposing player in order to tie him up for some time so he can’t be out there making productive plays for his team. (Brooks Orpik demonstrates here, making four hits in a fifteen-second timespan in what has been called “The Shift.”)

And there is a concept in hockey we call “taking the hit to make the play.” This happens when a team is trying to set up an offensive play to get the puck to the net. A player on one team will let the other team’s defenseman hit him as he passes the puck to one of his other teammates so that, in a reverse-psychology sort of move, that defenseman is tied up in finishing his check, instead of out there defending the puck from his teammates.

So basically, you are accepting that physical hit because you know it will increase your offensive chances.

***

Things got a little out of hand in the comment thread on my post about the painkiller ban proposal.

I am still adapting to writing for a larger site. It is important to me that PWD feel safe commenting with their experiences. IME, they are much less likely to contribute if they have to carefully moderate their tone and make sure not to offend anyone who has privilege over them. They need to be able to speak candidly about what is going on in their lives without modifying their framing to be acceptable to the masses. And, as has been often discussed on Feministe, while “diplomacy” and 101 education are valuable things to do, if we allow it in every thread, it makes it impossible to take our discussion to a more advanced level.

I focus on making space for PWD. People who are currently not disabled are welcome as long as they realize that they are not the focus in this space. They, their needs, their ideas, their conceptions, are not the center in this space. They get every other space in the world for that. Every other space in the world is specifically built to suit them. If they are willing to relinquish that focus for a time, to listen to PWD, to do their due diligence in educating themselves on the background issues, and treating PWD with respect and accepting when PWD say they are doing something wrong or harmful — then they are welcome.

If they would rather insist that their ideas are more important, more valuable, more reasonable — if they would rather argue with PWD, if they would rather assert their understanding of the issues as clearly better/more reasonable/more in-touch/more important — if they will not listen to what PWD are telling them, accept criticism, and bite their tongue for one minute in their entire life to give deference to how PWD define their space and their experiences — then they are not welcome.

I am sure most of you are familiar with this framework. This is a feminist site. If we were speaking about men and women, rather than abled and disabled, would not most of you advocate the exact same definition of space?

Yesterday, we saw a lot of the latter comments in a thread where people with chronic pain were very clearly communicating the effect this policy would have on them. We saw comments that explained why the policy was being considered — as though the “why” hadn’t been laid out in the original post, reasonably, without argument from emotion.

And I responded angrily. The development already had me quite upset. PWD have to jump through so many hoops just to get barely-adequate care in this society. There are new restrictions every time you turn around. Commonly, you have to go through a dozen steps to get a product or service that’s watered-down and half the quality of what an abled person can access in one step. This is the second shift for the sick. It is very hard for many abled people to understand exactly how much we take on when we become disabled. The onus of access lies with the disabled person to correctly maneuver all the complicated and sometimes contradictory regulations, to take all the necessary steps in the right order at the right time, without mistake, because — like those long math problems in second grade — if you screw up one tiny thing, everything else might come tumbling down with you.

We had commenters “helpfully” inform us that we could just get a script for the narcotic agent alone and take Tylenol with it — and then come back defensively when PWD responded by saying but that puts an unfair burden on us when we are carrying such a heavy burden already.

I wish I’d had the energy to moderate that thread calmly, evenly, without emotion. To carefully explain to people why I believe what I do, why certain things are harmful even if they don’t seem so from the outside, why this regulation would be wrong and discriminatory, and why it is evidence of a larger problem in the structure of our society. To explain all of this in a measured, reasonable tone, with background and sourcing.

Academically.

I didn’t have that energy. I have chronic pain conditions. I am already pushing myself so hard to be able to write what I want to write while I’m guest blogging here, and handle the comments, on top of handling my life. Yeah, you know, I have one. I have to take my 14.5-lb feline leukemia positive cat into the vet for an exam and vaccinations to make sure he doesn’t catch some random infection and die. And take his 10lb sister in too to make sure she’s vaccinated, so she doesn’t end up catching it from him and getting sick herself. I have to help my husband prepare dinner. I have to clean the filthy bathroom. I have to take a shower, something that is enormously taxing on me. I have to run household errands. And, you know, visit with the in-laws for the holiday. All these things sap my energy.

And when my energy is not tip-top, my coherence suffers too. I have trouble putting words together. I get flustered.

So I’m not going to be able to respond reasonably every single time. Them’s the breaks.

Anger. Anger is a feminist issue. The anger argument is a tactic that the privileged party uses to shut down complaints from those lacking privilege. We recognize this when it is a man telling a woman she is too angry, hysterical, hostile, harridan/harpy/banshee/we all know the slurs. It is wrong. It is a way to simply dismiss the woman without having to actually pay attention to what she’s saying. It is taking advantage of the privilege you have over her.

I don’t give a flying shit whether that’s what you intend to do when you pull the anger argument on someone — anyone — a person of color, a disabled person, a queer person. This is well recognized in feminist theory; the argument that the unprivileged person is “too angry” and that people would be more receptive to their arguments if only they would state them sweetly, “you catch more flies with honey than vinegar” –

Don’t tell me you don’t recognize what bullshit that is when the non-privileged person is complaining about something that harms them, and the privileged person cries that they just can’t listen to you until you put it in such a way that soothes their ego.

Oops, I’m getting angry and unreasonable again, aren’t I?

So I responded angrily, mockingly, to comments that I thought were unproductive. I’ll give you a tip right now: last year I made sure to be calm and patient with a set of difficult commenters on one of my guest posts, and it went on for a hundred or so comments, before he gave up and began saying that I and other posters must just be depressed because we disagreed with him.

It did me a lot of good to engage patiently with that guy, mm? He walked away with respect for my argument, did he? No. He didn’t. He walked away the same as the opposing commenters walked away on yesterday’s post.

Anger is valid. Anger is a rational emotion in response to a world that is unjust. And to deny a person anger is to deny their humanity. It denies them the full range of human experience. It denies them the ability to process events in a natural, human way.

I wish I had been well enough to comment calm and patiently on yesterday’s post. I am being honest here. I wish I had been able to just explain diplomatically why I see things the way I do. Because that can be a valuable thing to do.

However, doing so can also transform that commenting space to one that – again – centers around the privileged person’s conception of the world. It forces other commenters to carefully frame their comments in a way that is palatable to the privileged person. And thus it completely shuts the door on a more advanced conversation about the issues affecting them.

No offense, but I’d rather shut the door on the privileged people’s protestations than on PWD’s ability to explore political theory relating to them. Sorry.

Oh: and pandas are cute.

***

My writing is, as a commenter described at one point, is a messy marriage of personal and political.

I write from a personal perspective, but I draw political conclusions from my experiences and observations, and those of other people like me.

It may not be a style of writing that appeals to everyone. It may not be palatable to the masses.But it is important.

I entertain abstract, academic style discussions. But I connect them to reality on the ground. This is vital. We can have as many cute little reasonable debates as we like, but if we never stop to pay attention to what people are actually experiencing in this world, what fucking good are we doing?

We all have different roles. And I know mine.

I bring my personal experience to the table. And there is a reason for it. And I am reminded of it every time a reader comments or emails me to tell me how similar their experiences are, and that they’ve never heard anyone affirm them before. They have never read something in a political context – and make no mistake, feminism is a political theory – that addresses their life.

People with disabilities are largely segregated from wider society. Institutionalization is alive and well today. And barriers to access keep many PWD stuck at home, unable to participate in all different aspects of society.

And many of us are out there, mixed among the wider population — but invisible. Our disibilities are not readily apparent. And therefore our experiences are invisible as well.

My writing aims to make those experiences visible. To expose them to the rest of the world. To force them in the faces of able-privileged folk. So they see that we exist. So they can no longer walk around under the impression that we are not among them.

When our experiences are invisible, our needs are not addressed. Society is already built around the needs of the currently able, to the exclusion of the rest of us. We have made some strides, but there’s still a long way to go. And part of that is making the rest of society realize that people with disabilities are all sorts. We are in wheelchairs and walkers, we use canes. We use medication and TENS units you can’t see. We use braces. We are on bed rest. We have assistant, we walk alone. There may be a visible physical difference or a noticeable behavioral difference. Or we may look and act just like an abled person.

Most of society has trouble recognizing this wide range of disability. When disability is recognized at all, it is within the narrow narratives that PWD have come to recognize: the pitiful/tragedic story, how awful it must be to be “half a person“, or the inspirational/supercrip story, watch in amazement as sie overcomes hir disability! There really isn’t room for any other kind of story in wider society — and yet our stories are so diverse. And so important.

That is why I tell my story. It is only one story. But there are many people like me – and they’re out there writing too. And I want to make sure our stories are visible. And my goal is to make them so visible that they can no longer be ignored.

Everybody needs to be exposed to the reality of living with a disability. Everyone needs to be exposed to what actually happens, in practice, in our lives. All the theoretical discussions in the world aren’t worth shit if we’re still left to die on the streets in large numbers.

Unfortunately, able-privileged spaces (that is to say, almost every space in the world) tend to entertain only those theoretical discussions. The academic, the abstract. To the exclusion of what is happening on the ground. Because that’s messy and hard to reconcile cleanly in a calm, level, reasonable way.

That’s why I tell my personal stories. Because there are lessons to be drawn from them.

The thing is, when I tell my personal stories, I expose myself to a society that is ignorant at best, actively hostile at worst. I expose myself to all the biases contained therein. I expose my self to the public, and everything it can bring.

I take the hit to make the play.

***

I handled yesterday’s thread imperfectly. And it exposed me to a set of people who took offense at my anger – yet found it completely appropriate to make insinuations about my character, my state of mind, and even my sobriety – in one case stating “…this kind of vehement, angry response in a discussion that is relevant to one’s ability to obtain an addictive substance seems eerily familiar to me, as someone who has lived with an addict for nine years. When a rational person suddenly behaves irrationally when his supply is threatened…”

You can find the discussion yourself, at the web site of one of the key commenters in that thread. Right now, I’m just hurting. I tried. I messed up. But fucking hell, I am putting myself on the line in hopes that maybe, in some small way, I can advance the conversation on this issue so that other people currently harmed by certain attitudes might some day see a better world — and maybe find a way to cope in the meantime.

And it hurts.

I’ll leave you with the words of Cara and Abby Jean.

The thing is

The thing is, most of us feminists know well enough that when an anti-choice man comes into a pro-choice woman’s space and tell her that she’s wrong on the subject of her own reproductive rights, there is, no matter his phrasing, nothing “polite” or “reasoned” about what he is doing.  Most of us feminists know perfectly well that the man is still arguing that the woman, the woman to whom he is speaking as well as all women, does not have a right to make decisions about her own body.  Most of us feminists know that when that man gets a negative response, and he counters with an argument about how the woman shouldn’t take it so personally, he is displaying privilege.  Most of us feminists know that there is nothing “abstract” about a woman’s right to bodily autonomy, and that it affects real women’s lives.  It’s not generally lost on us that most of those who spend time treating the “abortion debate” as an excuse to show off fancy rhetorical skills are men.  We generally know that when women point out that hey, this actually affects our lives, we are shot down with the admonishment to not be so “emotional” on the subject.  And we generally know that this is wrong, and hugely misogynistic.

But ah, it’s called “privilege” for a reason, isn’t it?  And so for many, many feminists, these simple, basic understandings that we lament so many men not getting, go out the window when talking about a different oppressed group.  And white feminists will tell women of color to stop being so emotional about the “objective” debate regarding whether or not something is racist.  And cis feminists will tell trans women to stop being so emotional about the “objective” discussion of whether or not their gender identities are legitimate.

And temporarily able-bodied feminists will tell women with disabilities to stop being so emotional about the “objective” discussion on whether or not their experiences are valid, and whether or not there is real reason for their concerns about decreased access to needed services.

And then they will fail to see why what they’re doing is wrong.  Because, well, that anti-choice guy, he’s an outsider.  But us, we’re all feminists around here!  And no other identity could possibly matter!  So we’re all friends!  And how could you dare treat the privileged, ignorant, sticking her foot in her mouth “friend,” the same way that you treat the privileged, ignorant, sticking his foot in his mouth “enemy”?  It’s so unreasonable!  They were just making a reasoned argument and demonstrating their rhetorical skills on this fascinating matter!  STOP BEING SO IRRATIONAL.

I am a person who is privileged in virtually every way other than her sex.  And this is exhausting, infuriating, and wildly depressing to me.  I can’t even begin to imagine the feelings of those women facing further oppressions, who are the actual objects of these patronizing diatribes about reason and logic, from supposed “friends” who know enough to know better.

it is so hard…

it is so hard for women to talk about their own lives and experiences without being attacked. even sharing those things with an audience expected to be mostly sypmathetic, or at least expected not to fashion the author’s own words into a weapon to attack the author herself, is a risky and sometimes very dangerous act.

a lot of these problems seem to stem from a reluctance to give any deference to the person’s own account of their lives and experiences. we think that our academic skills, our research and our logic, can give us full and complete insight into and understanding of an issue – regardless of whether it is something that could ever affect our lives.

but there are things that you cannot understand until you have lived them, cannot learn unless you are taught by people who have lived them. whether it be the amount of hassle and difficulty caused by adding another separate medication to an already complicated pain management regiment for a person with a disability, or how the timing of bus transportation can dramatically increase child care costs for working single mothers – these things are learned most effectively from those who have experienced them.

so to enter a space where a person is talking about their own experiences and to tell them they are wrong, that they will not be affected that way, that it is not that big a deal, and that you know so because of your research or your logic – that is the opposite of learning. that is affirmatively shutting down discussions which could lead to learning. and it makes it much less likely that the person with experience – the person without whom you cannot learn the essential details of the issue – will be willing to participate in such a discussion in the future.

Cara posted about it at Feministe. And we do love Cara, but the thread there (and at Hoyden About Town) quickly devolved into fail, several directions of fail in fact. I just want to walk you guys a little further in one of those directions with me.

Candace left the following comment:

As a PWD, just know that I agree with almost all of what you’ve said, Lillith. I’ve seen sooo many instances of abuse, most often of people carrying their many shopping bags out of the huge mall and then pulling out of their accessible parking space.

I understand why it is so viscerally frustrating to watch seemingly able-bodied people act totally able-bodied while also visibly taking advantage of privileges meant for disabled people. I think everybody gets that, on a deep level. But this feeling comes from many places within us, and uncomfortable though it may be to admit, most are rooted in internalized ableism.

Coldneedles responded:

I have chronic fatigue syndrome. I don’t currently need accessible parking, but I can imagine it in the future because I’ve been declining quite rapidly. I could then very well be your so called “abuser” of the system.

Want to know why?

Well, if I live by myself I will need to go shopping at some point. To do frivilous things like buying food and clothing. I will calculate that I will suffer more if I don’t carry heavy bags. because then I will need to come back and use my precious energy on more driving, walking and even getting presentable so I can go out. Once I get back from the mall I will collapse into bed and not be able to do anything for the rest on the day, possibly even the next two will be affected.

But you wouldn’t see that. Neither would you see the things I have to do to make sure I can go- resting before hand, taking medication, taking rest breaks in the mall itself.

Would it be better if I was denied an accessible parking space, merely because I can technically carry heavy bags? Even if that meant I could not go to the mall to supply my basic needs? Even if that meant public places were inaccesible to me?

Coldneedles, you are not the only one.

Before I moved out here to Pennsylvania, I spent a year living on my own in southern California, attending Cal State Fullerton in Orange County. Ultimately, that didn’t work out for me, but I put up a good fight before bowing out.

I spent my first six weeks in the dorms before being kicked out, because they provided no priority access to housing for students with disabilities or distant students (CSUF was four hours from my hometown of Visalia), with 800 bedspaces for a school of over 38,000 at the time. And then I moved to an apartment about five miles away, in Orange. I began school that year in June, and was without a car until the end of September, leaving me dependent on the public transportation system. In Orange County, that meant the buses. I’ve written about the experience before, here.

So to get food, I had to use the buses. The nearest bus stops were about a mile away from my apartment either way. Then it was a short ride down the street — about a mile — to the nearest grocery store. Then, the walk around the grocery store, and then making my way back to the bus stop — through the bus ride — and the walk back to my apartment from there — now carrying all those groceries.

My disability is, and was, invisible. I managed to make those trips for those first few months. I wouldn’t've made it as long as I did if I didn’t eventually get that car, though.

I had to make a calculation, every time: 1) how much can I reasonably carry? and 2) how often can I make this trip?

If I carried less, that made the trip easier. But it meant I was going to have to make that trip again much sooner, and overall more often. Which would end up dragging down my physical health much further. But there was a limit on how much I still could carry. And if I tried to overstuff my tired arms to keep from returning too soon, it made my condition considerably worse in the short-term and only marginally better in the long-term.

This also meant I had to buy many more processed and boxed foods, because I couldn’t get too much that could be outside the refrigerator or freezer for more than the hour or so it took me to get home (between bus connections and the walks), and because I only had so much energy to prepare food for myself when I was devoting all this energy just to buying the food and getting it home. And, of course, that meant poorer nutrition, which didn’t help my physical state much either.

It was a calculation I was destined to lose, pretty much.

So yes, you might have seen me — a tall, slim, healthy-looking 20-year-old woman with no visible deformities who walks upright with a normal gait — carrying bags of groceries and walking a considerable distance with them, including up the flight of stairs to my second-story apartment. That doesn’t mean I wasn’t disabled.

You also didn’t see me slump those bags to the floor at the doorway, with only just enough care to keep them out of the door’s way so I could slam it shut as I slumped my tired body to the floor/couch/bed, and resting a few minutes before putting away what had to be kept cold but leaving the rest for several hours later, when I had rested more and finally recovered enough to get up and move around again.

This is a calculation I go through every single day of my life. How much work do I take on, and how do I pace it?

Take today. The cats’ litter box desperately needs changed, but I don’t have any litter left. And I need new tights for a job interview tomorrow morning. So I had to go out. And I went to Wal-Mart. Because Wal-Mart had both tights and kitty litter. And it wasn’t going to do workers any better for me to drive to PetSmart and then to JC Penney or Kohls, the two choice’s I’d've had otherwise, than to get those things at Wal-Mart. So I went to fucking Wal-Mart.

And when I got there, I took a normal parking spot. And it was a fucking mistake. I do my best not to use my disabled placard unless I know that I absolutely need it, because there are never enough spaces, and I don’t know who else might come along who might need that proximity parking more than I do, and I feel guilty about it. Plus I like to avoid the glares from people when they see that young slim white chick step out of her bright red two-door with a sun roof and a spoiler on the back (which was the best car available to us in a hurry when I totaled our old beige sedan a year and a half ago) with that blue disabled placard hung from the rear view. The less I deal with that shit, the better.

So I parked about fifteen spots farther away than I would’ve parked with the disabled placard. And I got out of my car and walked in the door. And there were no carts.

I laughed about it with the couple right in front of me. They picked up a basket. I didn’t bother, because the litter wasn’t going to fit in it.

I could have walked all the way to the other end of the store to get a cart, or gone exploring the parking lot for a stray one. But that was a lot of walking I honestly did not feel I could do — so I decided I’d just get the cat litter last so I didn’t have to carry it around the store. And that was going to be a serious physical burden on me. But it was the least physical burdensome option I had available to me right then.

So I walked over to the “intimates” section in the middle of the store and grabbed a box of pantyhose, then trekked back to the side of the store I started at.

I also need some new hair stuff (which is as much a matter of comfort as it is of looks). And I know my husband hates sitting there while I look over all the different stuff that’s available and compare ingredients and compare prices and so forth. It can take me a little while. So I figured, because the hair-stuff aisle was right next to the cat-litter aisle, I would use this time to do my comparison shopping. No one else was in the aisle when I walked around the corner, and I kneeled down where the stuff I wanted to look at was, and started looking.

At that point, a middle-aged woman pushing a somewhat older woman in a wheelchair came in. And behind her, another woman pushing another woman in a wheelchair. The second said “excuse me” and I looked up, ready to straighten and move out of the way, but it turned out she was merely teasing the first couple of women, whom they apparently knew.

The assistant women (so to speak) strolled the older women down the aisle, asking “Do you prefer any certain brand?” and picking one thing up to show them, and so on. And it made me grateful that, at least for now, I can do that sort of comparison-shopping without having to ask someone else to fetch the things for me — because I know myself, and I know I’d feel too guilty and “prideful” asking for something like that. Those are the sort of situations where I throw my hands in the air and deal without — whether it’s something Really Important that is actually going to affect me quite negatively, or whether it’s looking for new hair-stuff, or whether it’s trying on clothes so I can look the way *I* want to — because that little voice in the back of my head starts repeating, “burden”… and I don’t feel like I have a right to any of those things, the minute someone else has to do anything for me to have it.

And I couldn’t help but feel guilty, in the middle of this conversation: I, the slim young girl, standing there between two boomer-age women in wheelchairs, trying my best to give them space and not get in their way — and I just wanted so much to be known as disabled, too.

I was finished perusing, for the most part, so I rounded the corner back to the cat litter and grabbed the small box — which costs me more money, but I can’t handle the giant pail, even if my husband carries it in and out for me, because it’s too heavy to lift and pour from when I’m actually doing the box. But the “small” box was still 21lbs.

And as I shoved the pantyhose under my left arm, and picked up the box of cat litter and started walking, the first couple of ladies also rounded the corner. And I had to say “excuse me” because we almost ran into each other.

And oh God: having just wanted to connect to these two women, to be recognized as disabled, too — here I am carrying a very heavy box of cat litter in my arms, without a cart or anything, right in front of them. And I thought: if I had made any mention of my disability before, what would they be thinking of me? Right now, it was just “able-bodied young girl.” But if I had, would it now be, “Faker“? “Abuser“? “Oh my God, I can’t believe she has the nerve to claim to be disabled, there she is carrying an awkwardly shaped twenty pound box with no assistance, just look at her“?

Me, a few days ago on a “good day” with my hair done and dressed up, and then today, with my hair pulled back in the first shirt and pants I picked up.

I made a beeline for the checkout lines, trying to maneuver between crowds of people without having to stop or stray too far from my path. And there was only one express checkout line open on this side of the store, and there were four people waiting in that line and nowhere to set this box down. So I went to the nearest regular line, where I could set the litter box down on the belt behind two women’s cartfulls of groceries, and stand there longer than I’d objectively have been standing in the checkout line — but without somewhere to set this box down. (Lifting from the ground is simply not feasible for me, period.)

These are the sorts of little tradeoffs people with chronic illness make all the time. I was so flushed and in so much pain at this point, standing there for five minutes longer actually hurt me considerably. But it was less hurt than I’d've sustained the other way.

So I waited, then it was my turn, and when the cashier didn’t give any indication of an intent to move the litter from the belt to the bagging area, I laughed lightly and said “Yeah, leave that there. I just couldn’t stand in the express lane holding this, I needed to set it down. There were no carts when I came in…”

Why did I feel like I had to justify myself?

So I swiped the credit card, put the bag with the pantyhose in it over my arm, took a breath and hefted the box up to my chest again. And I made a straight line toward the exit. And now, there were eight or so carts in the cart area. So I plopped my purchases down in the cart, to take out to my car. Which was about five times as far a walk (from store entrance to car) than if I’d have used that disabled spot…

And when I got to my car, of course, guess what was waiting there for me?

So: I was a seemingly healthy twenty-three-year-old who drove herself to the store, picked up that twenty pound box and carried it to the checkout line and then out the door. Can you imagine what people would say if they saw me carry that box straight to my blue-line parking spot?

I am a disabled woman. Just because you don’t see it doesn’t mean it isn’t there.

this post may be a little inside baseball for those who aren’t active in the feminist blogosphere, but i think its an issue that translates. what to do when a big and influential blog or writer consistently posts things that are offensive, or marginalizing, or just plain stupid? is it better to stay part of the discussion to offer corrections and insights and laternatives, or is it better to save up your limited sanity points and bail on the forum all together?

i’m thinking primarily of the feministing blog here. it’s a huge feminist blog, probably the biggest general feminist blog, and it gets a whole lot of traffic. however, it puts forth a primarily white primarily non-disabled primarily cis-gendered primarily middle/upper class view of feminism, either by eliding those issues to the point of invisibility or by explicitly dismissing them. there was (and still is, afaik) a call for trans people to boycott feministing because of the way they handle trans issues, especially the comments in this particularly nasty thread. just this morning, there was a post about sotomayor that denied the intersectionality of her race and gender in the critiques of her nomination. and a recent comments thread in which people admonished as ableist for using the term “lame” whined about being oprressed by the P.C. police.

as a result, i’ve dropped feministing from my blog reader. i was annoyed more often than i was informed. it made me feel disappointment, rather than kinship, with the feminist community on that site.

but. then i see people like renee trying to make a point about the racial politics on the blog and getting totally shut down and dismissed and attacked by fellow commenters for making a good point that needed to be made. and i think about how much bullshit she is opening herself up to just for asking why the one feministing blogger of color is always the one to post about historic events of importance to people of color. and i feel like i should be there, supporting her, supporting those critiques. especially because feministing is such a big and prominent site and it can often serve as one of the introductions to the feminist blogosphere. i started there before i discovered womanist musings and the curvature and questioning transphobia and the like.

so – am i a better ally by refusing to engage with problematic forums, or by participating in those forums to offer relevant critiques? i still don’t know.

And this post is going to ramble in a slightly different direction than Abby is going here, so bear with me.

I think there are a couple of different things going on here and it’s worth trying to tease them out:

1. engagement with a space that is hostile, indifferent, or even just a mixed bag when it comes to an identity group you are a part of

2. engagement with a space that is hostile/indifferent/mixedbag when it comes to an identity group you are not a part of

1.

It comes down to a bottom line of five words: are you up for it?

It is a decision based 100% on what you personally feel you can do. You are doing what work you can, in any number of areas in life; you are not obligated to be there for every stupid word uttered by every clue-challenged person out there. You can engage if and when you feel up to it. It’s your decision whether 1) this is a time pushback should happen and 2) you feel like you can handle being the one to do it.

There is never a time where it is acceptable, in a situation where a privileged person does something stupid &/or harmful, to hold the person harmed to account for it. The onus us on the privileged person to not do that stupid/harmful shit. Not on you to somehow miraculously be up for every fight.

Sometimes, the fight will make some measure of difference, and sometimes it won’t. Sometimes, you can take that fight, and sometimes, you can’t. Or don’t feel like it. You can fight the good fight, even if it isn’t going to go down in the history books. Or you can skip it, and save your energy for other things — from another fight, in another place, on down the line — or for a hot bath later that night. You have a responsibility to you and yours; when it comes to collective responsibilities, where there is a conflict between one’s immediate, personal life and one’s group identity, the rule is: blame for any damage incurred falls solely to whoever the person/group is that you would be fighting. The ones who did that stupid shit in the first place.

2.

As a friend or ally, a person with privilege but who cares for justice for an unprivileged group, there really is no easy answer. Sometimes, there isn’t anything you can “just do” to make the problem better.

(Remember, you are a person with an obligation to do right by others — not a superhuman taking on the noble burden of saving the poor helpless Other. The difference between the two is that the latter makes the privileged person who the story’s about — the former removes the privileged person from the center of the conversation.)

Certainly, the privileged person’s choice to abandon a venue with a history of problems is a choice based in immediacy: it makes things easier for you; it relieves you of having to face those uncomfortable moments.

It does not follow, however, that the privileged person is obligated to stay at that venue and keep fighting. It’s not that simple, not that easy.

And this is where we must understand the importance of roles in the struggle for justice. Because there are many different roles to play, many different approaches to take, many different areas to address.

We — as a world of all people –need to keep each other alive,
need to free us from violence and hatred,
put food on our tables,
ensure our health,
keep our families together.
We need to strengthen our communities,
treat each other with respect and empathy,
accept difference, accept similarity,
but place no moral weight on one over the other.
We need to fight against hostile attitudes,
push back against stereotypes,
break out of confining narratives.
We need to examine and deconstruct
privilege
power
oppression
We need to know what they are and how they work
and we need everyone else to know it too.
Because, as much damage as you can still do as a person who understands these things, there’s no way there will be widespread change until many more people understand them too.

Here’s the thing — the immediate and the collective both need help.

So, it is useful to get in there, when someone says something stupid, and explain why that thing they said was so doggone stupid.

Even if it isn’t at some international press conference. Even if it isn’t many people. Even if your feeling is that those people aren’t going to go on to be murderers or congresspeople or someone who does something Big.
Even if it’s just you and that guy down the street. Or you and that ass on a message board.

Because if we eschew all action that isn’t Big Enough, will we ever do anything? If we give up because we can’t Make It All Go Away, In Just One Easy Step, are we doing anyone any good?

HOWEVER. And this is one great fucking big However.

If a person without your privilege takes you to task — personally or indirectly — because you’re sitting over there squabbling with Joe Know-Nothing down the street when sie is still hurting — you take that.

Sie might need food on the table, or affordable health care, or safety from violence. Or sie might want more attention on this court case, or help getting this piece of legislation passed. Or sie might want financial help to get this community project started. Or sie might want more direct engagement with hir, rather than talking amongst your privileged selves as those sie (and those like her) just don’t exist. Or sie might want more people to fight the good fight in another venue, for any number of reasons –

Sie has the right to be angry with you for not spending energy in the places sie feels are best. Because sie has the ultimate right to determine what makes an actual gdamn difference to hir.

That might put you in a bit of a bind. Because there isn’t any one easy thing you can Just Do and know that you’re doing the right thing and no one can be anything less than satisfied with you for it. There just isn’t.

So do you stick with it? Or say fuck it and quit (that particular venue)?

Well. In that case, you make a decision based on what you feel you can personally do best. You make a decision. And it is what it is. And you move on.

I don’t think this is quite what Abby was looking for — it’s not a practical answer, information that makes it easy to make that actual particular decision.

I think, mostly, it’s just that I never see this point being made: that we should all know that it doesn’t matter what we do, things will still be fucked up and we will still have responsibility.

But that’s not a call to apathy or despair. And it’s not an exoneration.

It’s just trying to remind us that we aren’t the center of this conversation. Do what you gotta do. It might be a hard choice (for me, feministing is an easy choice, but feministe is a hard one; that might be different for different people). And you live with the implications. Just know that it’s not going to tie up neatly in the end. That’s how things go.

I understand why womanism seems attractive from the outside.  It truly advocates for the equality of all beings however, it is a movement spawned by the rejection of WOC; more specifically black women by mainstream feminism.

When we look at social justice movements across the western world they all have one thing in common, they are lead by whiteness.   Despite a claim that said movements are about equality, the racial dynamics are positioned in such a way as to reaffirm our dissonance in worth and value.   This purposeful erasure,  or more specifically absence of power is a result of the social belief that whiteness is not only naturally fit to lead but ordained to do so.

How many times have blacks and whites worked together in various organizations only to find that our voices are silenced?  We continually make  suggestions for activism only to have it denied and then later accepted when it is rephrased by a white member of the organization.  The racism in this activity is never acknowledged and the white person is given the credit for the idea.   When we make a comment as to how race interacts with an issue, we are again silenced and told that we “are imagining racism”, as though whiteness is any position to decide what is and isn’t racist.

In a recent post Monica of TransGriot suggested that feminism needs to work on its own issues first and I must say that I highly concur with this point.  There are so many divisions in feminism that we cannot even begin from the basic idea that all women are equal and face multiple forms of oppression.   What we find is that different offshoots tend to privilege their experience over that of another and then declare themselves fit to judge how other women live their lives. We have radfems slut shaming sex workers,  third wave feminists stumbling on their privilege while ignoring critical anti-racist work, eco-feminists who promote  environmentalism based in an essentialist understanding of gender, Marxist feminists  that are blind to anything that is not related to finance and liberal feminists who only want to be the “equal to a man”, never thinking about what constitutes “woman”. While there can never be a monolithic woman, the lie that sisterhood will save us all continues to be repeated.  Privilege has always been and always will be the Achilles heel of women’s organizing….

Go read the rest

Seriously, go read Renee first.
What follows are my own personal reflections as a white woman watching womanism with interest.

I know what I am. I’m a privileged white girl. I may’ve grown up poor but I sit in a seat of comfort now. I live with a disability, but one which grants me a fair amount of privilege even within the ranks of pwd. And… that’s really about it. I am privileged in every other way. White, young, cis, straight, heteronormative, middle class, thin and healthy-looking, native English speaker, mobile, disabled but “pass”able.

So, there’s a lot of bullshit to bulldoze thru’ before I can start to see things clearly.

It took a serious smack in the face for me to get off my ass and start seeking out the opinion of WOC during the conflicts that broke out in the feminist blogosphere (iirc) early last year. Race has been part of my background, growing up — something I was definitely aware of, something I cared about on a core level, but something that stayed safely in the background at all times. That’s privilege. I never had to think about race in my day-to-day life.

But something in that conflict just got under my skin.

And I wanted to start thinking about it. I wanted to learn, I wanted to listen. I wanted to be an advocate, a friend. I wanted to be witness to what I saw going on in their circles, something that just looked right.

Honestly, that’s the same way I was drawn into the feminist blogosphere a couple years previous.

Feminism… it is what it is. Feminism is what gave me a framework for understanding social justice. I’ve learned so much from feminism. And I’ve met so many awesome women through this community. But there is no doubt in my mind that feminism, for its strengths, is a movement centered, to a fault, around women like me. The feminist movement is built to serve the interests of white, higher-class, straight, cis, fully-abled, “enlightened” liberal, “health-conscious” women. And it is a movement which is undeniably hostile to those who challenge that paradigm — purposefully alienating.

Which is why womanism came about. So women of color had a space to work for the benefit of women where they were the center — where they weren’t treated with disdain, like dogs at the table begging for scraps.

It’s incredible to watch what results. These are amazing women doing amazing work. And there is something about the movement that really cuts to the core of social justice. There is something about womanism that centers people as people in a way that feminism, in my eye, just doesn’t, when looked at as a whole.

I’ve seen that same something in the disability community, and in the trans/queer communities. There is just something about these people, beat upon by the world, who reach inside and dig down to the core of humanity. And it shines through. The movement does not aim to simply grab power for a class of people. The movement aims to find those most hurt by a hostile society, and to treat them with dignity and respect. No matter who they are.

There is a heart in these communities that I only see in part of feminism. People who are taking the beginning principles of feminism and attempting to strip them of the privilege-upholding layers of shit that have been laid upon them through history. But it’s not enough to make feminism better. To make feminism not a privilege-upholding, power-seeking movement.

But there is something in womanism that works differently. That moves, not for power, but for justice. And that something — it just feels right.

These movements are not perfect. There are dynamics in every movement that merit a critical eye. Humanity is messy.

I admire the hell out of these movements. But I can only lay claim to one. The others, no matter how I identify with the heart of them, I do not get to claim. I do not get to be part of. They are not mine.

They just are. They exist. For their own purposes.

When I see a woman I admire the hell out of speaking about how deeply she was hurt, by my movement, a movement to which I contribute — she speaks about how she tried to work with them — us — and was betrayed — and now she wants nothing to do with us, that they — we — I, make her skin crawl…

I am anxious. I feel awful. But I know what she is saying is truth.

I call myself feminist. It’s the best shorthand I’ve found to convey what it is I care about. But I know what else it conveys.

And I have to own that if that’s the movement I’m going to claim. I have to own all that bullshit. I don’t get to say “Well, I’m feminist, but I’m not one of those feminists.” It doesn’t work that way. I have the same damn privilege. I’ve been part of the same damn problems!

It’s tempting, confronting this, to toss away the label “feminist.” And to look longingly at the label “womanist.”

But that’s not my movement. I don’t get to lay claim to it. I don’t get to use it to cover up for all the bullshit that happens in my name — the bullshit I, inevitably, am part of making. That is not fair. That is not just.

That is, yet again, white women moving up a step on the backs of women of color. It is, yet again, white folk appropriating that which POC have built, by their own damn selves, for their own damn purpose, and using it in a way which not only makes them and their work invisible, but sets foot in their space, centers their community around us, again.

Takes over.

No. We don’t get to do that.

I want to be your friend, not your leader.

And the only way to do that is to stand back and let you do what you were already fucking doing.

When you do something so incredibly fucking stupid and offensive, I don’t give a shit if you apologize. I don’t even pay fucking attention. I don’t care what kind of apology or nonpology it is or how much you care or how much other people find it convincing.

Because fact is, if you “apologize” and then go on with business trying to ignore whatever issue you displayed astounding ignorance on, you don’t deserve forgiveness, I don’t care how awesome you may be in other areas.

The only way you’re worth our attention is if you use that moment of stupendous foolishness to educate yourself and turn around and use that knowledge for something. To fight for the people you wronged.

And we can tell when its genuine, folks. We can tell when it’s done out of foot-dragging obligation/image maintenance vs. sincere desire to better oneself/one’s world. To leave things better than you left ‘em.

You can’t cut off my leg, but then give me a really smashing manicure and try to call it a day. What you do to make up for things matters.

Absence of idiocy is not enough.

That is all.

ETA: Of course, Jezebel didn’t even make a sincere attempt to apologize; this post seems to imply they at least did that much. They didn’t. And it wouldn’t have mattered if they did. Because in the meantime, there has been an absence of sincere attempts to make something good out of it. Instead, there has been an attempt not to make one’s own self look bad again. That is what I’m getting at.

Many accessibility solutions are structural; they require collective action — constructing spaces such that wheelchairs can be used within them; hiring interpreters and providing caption services… these are not actions that can be undertaken by a single person.

What is unfortunate about this, though, is that it relieves the fully-abled individual of hir responsibility to hir disabled counterparts. It means the fully-abled individual can safely get away with never thinking about disability, and the connection between societal access and hir actions specifically, at all. Sie never has to consider how her attitudes and behaviors very really shape the environment of hir peers. Sie never has to stop and think, how does what I am doing affect those around me, and how can I change that to make things better for them?

When all solutions are collective, your own actions become invisible. Your contribution to the world around you becomes invisible. The power you hold over other people becomes invisible. Your status as part of the problem becomes invisible.

So let’s be clear — YOU ARE PART OF THE PROBLEM. And there is no instant solution, no magic words that can make that “go away.”

But what can you do?

I thought of what I think is an illustrative example the other day.

When I was attending college, I had a lot of walking to do — at least a mile from my dorm to each class, and of course the walking in between. It was exhausting, and it was one of the major factors that led me to drop out the first time.

One of my classes was on the sixth floor of the humanities building. Another was on the fifth floor of the math and science building. And I had several choices on how to reach those points:

1. The elevator.

2. The escalator (in the math building).

3. The stairs.

Here’s the irony: the only accessible solution was the stairs.

I have a physical disability. That disability is also invisible. I can climb stairs, but when I do it precludes any remotely physical activity (up to and including sitting upright) for a couple days, compounded the more flights I have to climb.

This was not teneble, not when I had to do this three times a week, and that doesn’t even include the energy required to walk to the building in the first place, to sit in the hard uncomfortable chair for an hour taking notes, and the energy I needed to do the home assignments, projects, and studying necessary for the class. And that doesn’t account for my four other classes!

So: Why couldn’t I use the elevator?

Well, because everyone else was using the elevator — so many people that there was a long line and usually a 15-20 minute wait before you could step foot in one.

Again, I have an invisible disability. I could have pushed to the front of the crowd every day, jostling my way through dozens of people to weasel my way in the door. And that would have made me kind of an asshole, you know?

So what do I say? “EXCUSE ME, I’M DISABLED, I NEED TO GET IN.” And everybody would turn to look at my lanky eighteen year old body, with no visible deformities, no mobility aids or other assistive devices or personal aide or caretakers, having walked in the front door just fine. And then everybody would be thinking that I was kind of really an asshole.

Complicating things is that at the time, my severe anxiety was undiagnosed and untreated. There was no way I could have even squeaked out a humble “excuse me,” much less forced my way through the crowd, much less shouted for all to hear that they needed to get out of my way and give me “special treatment.” Oooh, how I loathed special treatment. It made me feel like I was, you know. Disabled. Not normal.

Anyway.

This crowd existed in front of every elevator in every building on campus. Not all of the people waiting at that elevator were healthy enough to take the stairs. There were surely others with invisible illnesses like me, and others yet who just weren’t in the greatest shape, and so on. But the majority of those folks took the elevator because it was there. And those folks are the ones who made my life, and my participation in society, that much harder back then.

So: Why couldn’t I use the escalator?

Here’s a different problem. A lot of kids used the escalator. An escalator, as you know, is basically a revolving set of stairs that moves upward, so that you don’t have to do any climbing to get up to the next floor.

But here’s the problem. Everyone who took the escalator? Walked up it.

Everyone.

Now, if I wasn’t going to be climbing the stairs, why the hell would I go and climb the escalator? The entire point is to spare me that climb, right?

But I couldn’t use it that way. If I stood still on a single step, that would clog up the line of kids studiously climbing, climbing. They were narrow enough for two small people to stand side by side, but then not everyone is small, and we also had to carry our bulky book bags and such with us. So if one person stays still, there is a bottleneck effect — only a trickle of people can squeeze through, and everyone else gets stuck behind you standing still.

Assuming everyone in that crowd is healthy, someone who stands like that and creates that kind of jam is, again, kind of an asshole — right? So what was I supposed to say? “I’m disabled, sorry.” While everyone stares at the back of my entirely healthy-looking body for the next few minutes.

Right.

So: what was I left with? Well. The stairs were pretty free. Maybe I could have started to carry a cane, just to visually signal to people that I was sick. Even though I didn’t need that cane and wouldn’t know what to do with it. Do I hunch myself over, tousle my hair and do my best to act like I’m ninety years old and barely hanging on? Just so people would maybe, just maybe, believe me?

Or maybe… maybe everyone else involved could have stopped and thought about how their actions were affecting other people. Because I sure as hell wasn’t the only one facing this dilemma.

Just because the elevators and escalators existed did not mean they were therefore accessible to the people who needed them. Because accessibility is more than structural. It also counts on the actions of each individual.

Yes, you are part of the problem. There are times where you are in the way, where your actions are creating difficulties in someone else’s life. And you probably can’t even see it. But, you know — maybe you would — if you started looking.

***

My body is mine.

There are seven tumors in my breasts. They are benign.

Two of them are palpable on the surface at one o’clock on my left breast. The size of ping pong balls.

I don’t bother to self-exam anymore. I know they’re there. I don’t want to be reminded.

***

You know the slur idiot-savant?

I know its counterpart. They are called parent-saints.

There is a reverence simply unparalleled in this society (with the possible exception of professional athletes) reserved for these people.

What earns them such a status? They didn’t terminate the pregnancy instantly upon learning of the disability.

There are no standards beyond that. I do not exaggerate. It does not matter how a parent treats a disabled child. They might even beat them, and their actions will be excused because after all: they are dealing with a heavy burden, so who are you to judge?

And that’s it. Upon knowledge that a child has a disability, that child is no longer a child. Sie becomes a burden. In familiar words: dead weight. Hir humanity is erased altogether. Sie has no curiosity, no sense of mystery or delight, no joy or sadness, no hurt or relief. Sie learns nothing, hir growth only physical. There is no sentience.

And so the relevant facts about hir have nothing to do with how hir environment affects hir. They have entirely to do with how sie affects her environment.

Which is why “choosing” to keep a disabled child is cast as such: an active choice. Because the default assumption is that such a child is not worth keeping.

After all, no one wants to be saddled a dead weight.

The attitude toward those sainted persons is summed up thusly: “I don’t know how they do it; I wouldn’t be able to. There has to be a special place in heaven reserved for them.”

It is such a drag on a person’s life to deal with any person with a disability, any person who does so must have supernatural patience. Love is not an issue, of course; love requires more than one person.

Parents of children with autism, muscular dystrophy, Down’s syndrome, and others. Anything that requires assistive equipment any more complicated than a pair of glasses, and anything that renders a child unable to speak clearly and “articulately” in their region’s preferred language. It is not limited to these, but these are conditions that earn a parent a sympathetic eye.

Do not leave these assumptions unquestioned. Sarah Palin’s refusal to terminate her Down’s child will be invoked as a shorthand for her upstanding moral character. Don’t buy it. She did not do so out of respect for the disabled as equal persons of equal worth. She did so out of allegiance to a philosophy that would deny women the ability to make their own choice to carry to term and keep a child with a disability or to safely terminate a pregnancy likely to result in disability. On that note, even those in feminist circles will frame Palin’s circumstance pretty much exclusively as a question of awoman’srighttochoose. DON’T BUY IT. For better or worse, with a few but only a few exceptions, the only time disability issues are picked up on mainstream feminism’s radar screen is when it involves a disabled woman who becomes pregnant in questionable circumstances. Sometimes it is a case of rape, and sometimes it is a case of upper-class white abled feminists plowing right past said woman’s agency to insist she must have been raped and/or coerced because of her “diminished mental capacity” (whether or not her disability is mental in nature, and even then, whether or not her “capacity” is “diminished,” and even then, whether it has any bearing whatsoever on her right to control the direction of her own life). DON’T BUY THAT EITHER. Women are damn well entitled to a well-defended and highly-accessible right to reproductive justice. That includes disabled women, and that includes any woman’s right to choose to continue or cease a pregnancy likely to result in a disabled child, depending on that woman’s own personal considerations. THAT IS NOT THE ONLY ISSUE AT STAKE, and GODDAMMIT, THAT IS NOT THE MOST IMPORTANT ISSUE! Why the HELL is a woman who does not faint at the idea of a disabled child someone who deserves a Goddamn crumb of praise?

It’s like people see the ideas “disabled child” “pregnancy” “conservative politician” together and obviously the issue at hand is every woman’s right to be free of a dependent with any sort of “defect.” Just like every woman’s right to kill a mosquito that lands on her arm.

Don’t let this opportunity pass. “Liberal” men and “feminist” women, consider your privileged asses called out. You should know better. And I, we, any person with a shred of human decency, should expect better of you.

***

I was enjoying some much needed heat therapy and electrical stim at therapy today, lying on my back on the you-call-this-padded? exam table in a room of about eight others, all of us closed off individually behind hospital curtains. Usually I am one of two or three people in the room, but I came at a busy time today and that was the last table.

My physical therapy office shares space with an acupuncture/holistic therapy group. And, um, they had a rather loud patient in the curtain-cube across from mine. She was screaming at length about how her doctor put her on some medication for an infection but she’s going to taper herself off of it, medication don’t do nuthin, etc. etc.

When I laughed and told my therapist — quietly — “I think most people would be scared when they saw my medicine spinner” — she reacted negatively to my twelve-pills-a-day and Ol’ Screamer caught wind and bellowed louder and more defensively. THATSTUFFISNOGOODFORYOUDON’TYOUKNOW and so on.

I’m kinna’ tired of it. My therapist has been amazing but I was let down a little by her reaction. Look, I know I pretty much funnel 75% of my paycheck to Big Pharma. I know most people are only accustomed to the occasional Z-Pack. But most people don’t live every day in my body. And damn it all, I know the difference between my-body-now and my-body-then. I took about a third of the medication I currently take a couple years ago, and I couldn’t work any more than 8-10 hours a week, tops. Then when I got on my current regimen, I was able to up that to 20-30 hours in a retail environment. And back when I took none of it? Oh yeah, that time in my life, you know, the time I almost failed out of high school and had to drop out of college (whether fifteen units or five) twice, all within a span of 18 months?

Yeahhh, that.

I’m sick of placating. So, to those people, kindly accept my Gayest Look.

This public service announcement was brought to you by … oh hell, I’m going to bed.

* The language that is used to Other the disabled. Sweet Machine highlights the work of Susan Sontag, examining how “grave, incurable illnesses (particularly cancer in the 20th century and TB in the 19th) get appropriated as metaphors for moral conditions, political events, and the like — and then the negative connotations associated with those metaphors are extended back onto the people who actually suffer from the disease.” Considering the recent discussion at Feministe about the use of words like “crazy,” “insane,” “psycho,” “demented” etc. I think this is an important point to make. For the vast majority of people in our society, the only model they have to reference when they come into contact with a pwd is the concept of that disability, or disability in general, that has been built up in their minds. And that’s where our “ironic”/”sarcastic”/”irreverent” use of these words comes into play — we associate “crazy” with, say, the religious right, which means that they are Irrational, and Silly, and Dangerous, all at once, and those associations are reflected back onto the people who actually live with the condition at hand. It is not a conscious process, but again, it happens, and the more we use these words as a shorthand for all these negative traits, the further we reinforce a structure that contributes to the oppression of the disabled every day. Maybe it doesn’t really feel offensive when someone uses the word “crazy” around me, but that doesn’t mean that these tropes aren’t being steadily fed even right this very moment. And it’s not limited to mental illness, as SM explains; it also applies to fat — and to “gay,” and “retard,” and “gyp,” etc…

* When issues that are deeply important to millions of people in this country are glossed over because they might also be expedient to someone else with an agenda. See my sputtering below about Jezebel, fibromyalgia, drug therapies and Big Pharma; see Mindy’s guest post at Hoyden About Town on advertising companies and women’s products; see TAP’s Dana Goldstein wax political about Obama’s campaign actually centering women’s rights as an issue that includes more than simply white middle class women’s access to safe abortions. Those are just the examples off the top of my (very cluttered) head. Sometimes, people’s actual lives don’t fit neatly into your ideological narrative. And if you really want to be a friend to those people, you’ll turn off the “irreverent” macro and listen to their actual concerns. (Can you tell I’m really pissed off about this stuff?)

* The fact that my emails to my husband at work keep getting bounced back to me, and I can’t shake this anxiety, the trembling and heart racing and shortness of breath that comes with certain triggers, one of which is confronting people who beat upon the “fibromyalgia is bullshit” (still the leading search term to this blog) drum in service to their own egos. Usually, rambling at him helps me settle down, but I can’t really fit the jumbled contents of my brain into a 160-character SMS.

* My continued unemployment, which is going to screw up our finances so hard. I am looking around but I worry about the insecurity, the fact that I didn’t have much choice in quitting because of my disability, and the fact that my prospects are severely limited because of same — which means I’m likelier-than-not to remain unemployed for the foreseeable future. It’s unsettling.

* Pantyhose.

What Vague Pharmaceutical Industry-Invented Malady Do You Have?
Fibromyalgia. It sounds so daunting — like angina! which also sounds like vagina, or chlamydia. And if the pharmaceutical industry’s multibillion-dollar marketing machine has any sort of pathway into your consuming psyche, you’re probably aware of this hot new disease. Hasn’t the industry gotten so much better at naming new maladies since the whole dubious “restless leg syndrome” thing? Anyway, here’s fibromyalgia in brief: it affects primarily women around their middle ages — potentially 10 million of them in this country according to advocacy group, which means something like one in five. You’ll know you have it if you start to feel “chronic, widespread pain of unknown origin.” The pain won’t respond to anti-inflammatories, and no one knows where it comes from really, so instead of trying to sell you on something to soothe the pain, the pharmaceutical companies — namely Pfizer — is trying to soothe your brain’s perception of pain. Clever! Okay, so here’s the shocker: some people think fibromyalgia is a bit, you know, fictionyalgia. And “some people” includes the doctor who named it in the first place.

Why invent a disease? Well, if you’ve got a drug with a limited market — like Pfizer’s Lyrica, originally developed for seizures, it’s pretty genius business to make up a mysterious new ailment that a lot of people could potentially have or be scared they have. Where do you think ADD came from? What about “bipolar disorder”? “Irritable bowel syndrome”? Oh sure, those diseases affect one in 1.5 Americans, and we have them too, but:

…Those figures are sharply disputed by those doctors who do not consider fibromyalgia a medically recognizable illness and who say that diagnosing the condition actually worsens suffering by causing patients to obsess over aches that other people simply tolerate.

But why tolerate when you can obsess? And speaking of obsessing, did you know ADD makes people obsessive? I should be done with this post already but I didn’t have enough amphetamines today. What about you?

Moe, the post’s author, later “apologized,” saying:

Which brings me back to an important part I was trying to make when I posted insensitively about fibromyalgia the other day… We like to think we make rational purchasing decisions borne of a thorough survey of all the available options — or that at the very least, we are creatures of our own innate needs and desires. I can only assume that this is why a lot of you got so defensive when I joked that fibromyalgia was a “vague pharmaceutical industry invented malady.” A few of you turn out to have fibromyalgia — and “restless leg syndrome”, and whatever else I treated with my signature careless disdain. I’m sorry guys; I made my point less thoughtfully than I maybe should have. We all have health problems. But right now the most highly -capitalized, influential and consumer-savvy source of all that we know and learn about those problems — the developers of the drugs, the sponsors and publishers of their studies, the sources of continuing education to your doctors — is the pharmaceutical industry, and the pharmaceutical industry exists to convince us that our problems are “syndromes” necessitating a pill you take once a day.

Yeah, OK, that sounded totally sincere — NOT!! Haha, look, I’m being irreverent!

No, what you’re doing is telling me that the pain that has caused me to nearly fail out of high school in my final semester, drop out of college and remain bedridden for weeks and housebound for months afterward, drop out of college again a year and a half later, quit work, quit work again, and quit work again all within the past 14 months, is an invention of the Big Bad Evil Medical Industry, and that the medication that pulled me out of my houseboundedness and allowed me to even go to college that second time (during which I actually completed five classes, the only ones on my record to this day) is nothing more than snake oil.

To which I extend a hearty fuck you.

As I pointed out the other day at Hoyden About Town, a lot of people seem to get a huge kick out of declaring helpful products useless, and the people who use them brainwashed — in so many words — because after all, the companies who distribute them are only trying to make a profit off of our poor gullible asses.

What I find incredibly amusing is that I, one of those apparently intellectually-challenged souls, have actually read the research on this condition and its treatments, while they, the Wise Knowing ones, know approximately shit about any of it.

Throughout the 1990s, fibromyalgia was regarded as a “wastebasket condition,” a label to throw at hysterical, hypochondriac middle-aged women who were being a pain in the ass by demanding that their doctors actually give a shit about their patients. (Oops, sorry, I’m being irreverent again!) Nobody really knew much about it, except that it was totally a disease of old Faker McFakersons, the crazy old fat women who lounged about the house all day stuffing their faces with donuts and watching the cable they could afford even as they were applying for welfare benefits and we all know the stereotypes, so I’ll stop there.

Then some idiot got the bright idea to actually conduct clinical research on the condition and they started finding out that hey, this doesn’t seem to be psychosomatic at all, in fact there are distinct physiological differences between fibromyalgia patients and healthy controls, mainly in the nervous system and related parts of the brain, and all sorts of peripheral findings like sleep disturbances and pain “memory” and the like.

Huh. Who would’ve thought?

And now we’re into the new millennium and guess what: major medical groups still aren’t really paying a whit of attention to the condition. The main treatment is tricyclic antidepressants, which worked about as well as a single extra-strength Tylenol works on a severed leg (that is, it does some measurable amount, but only hardly), and doctors are still being dismissive assholes, leaving fibromyalgia patients to fend for themselves in managing the condition, often falling on the alternative world, which is going absolutely crazy pitching cures and panaceas to people whose problems stem from aspartame intake to phosphate buildup to an insufficiently positive outlook on life.

Then, in the middle of the aughts, BAM! All of a sudden, a single pharmaceutical company takes notice of the condition and thinks hey, here’s a market to be exploited! And they pump money into a promising new drug called pregabalin, which is an anti-epileptic drug that works by depressing the central nervous system, and it seems to actually have measurable impact on the pain of fibromyalgia patients in double-blind randomized trials!

Huh. Who would’ve thought?

And it takes several years to move through the whole FDA approval process, not without its bumps-in-the-road (including, recently, a proposed black box label), and Lilly decides to cash in on the fun with their Cymbalta, and other companies throw their spaghetti on the wall, which doesn’t really stick (sorry, milnacipran) but in the end, there is an Actual FDA-Approved Treatment For Fibromyalgia, which honestly does go a long way in legitimizing an unfortunately-maligned condition.

But when the commercials start airing, the bottom-feeders of the world heap derision anew, basking in the glow of using the suffering of the already-overburdened as a cudgel against the only group that has ever paid any attention to their condition in their quest to stake out a position of Purer Than Thou irreverence.

Ignore the fact that the condition existed decades before Big Pharma ever caught wind of it, which puts a kink in the whole “Big Pharma invented it out of thin air to pad their pockets” line.

Because if it comes from Big Pharma, it must be a lie. Make sure you keep your eyes covered so that you never see the lives of the actual people in question, who make have quite a different story to tell you.

But eh, why worry about them?

Or maybe women suffer from chronic fatigue and muscle pains more often because they often have to work full time, care for children, run errands, and do all the housework while the husband kind of hangs out. Find me a hormone to correct THAT.

I’m running on a headache and a sweat rag right now, so please excuse any sloppiness. Remember, it’s all Pharma’s fault.

(Where did all this come from? Jezebel’s rise to prominence in the feminist blogosphere, mainly. We all read blogs with whose every opinion we do not always agree, but I wanted to make sure this offense is officially called out, so at least people have a more accurate picture of what it is they’re supporting. This is the language of hatred. This is the culture being encouraged on this site. Please, be as mindful of these things as you are of bigotry against women. Thank you.)