I noticed something was wrong in the earliest hours of the morning, when my husband had disappeared from bed but I did not hear anything going on in the bathroom and could not see him anywhere.

Around 8, he got up to go to the bathroom and I lifted myself out of bed to use it after him. When he emerged, he was very clearly not well and said, in a seriously distressed tone, “I just had the most awful night” and stumbled around me back to bed.

It’s not emotional, he clarified as he curled up awkwardly on his side of the mattress, it’s just physical. He had problems feeling seriously sick to his stomach, which never culminated in anything, just churned on and on without relief, and had serious sharp pains in several places — shoulder, lower back, knees — and a generalized all-over ache that left him feeling miserable, unable to find a single comfortable (nay, just non-miserable) position no matter where he stood, sat or lay.

“This is how I imagine you feel every day,” he moaned, as he tossed his body into a different awkward position in an attempt to find some relief.

He needed the still, quiet, restful sleep so badly, but hurt too much to stay lying in place in bed for more than a few moments, and the pain was too distracting to be able to actually fall asleep — and precisely because of this, he was in no condition to be anywhere else but in bed sleeping. A familiar situation for me.

A few minutes later, already in his thirtieth position attempting to achieve some state of rest in bed, he pushed over to where I sat on my side of the bed and asked, “How do you do this every single day?”

Staring at my nightstand drawer, I smiled a bit and replied, “A lot of medicine. And you to help me.”

Kate Harding, writing at Broadsheet:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

… just sayin’.

(Cross-posted at FWD/Forward.)

Asking for help is something I have never been good at. It’s rather like standing in front of a car hurdling toward you, intending to push it in the opposite direction. It requires an enormous amount of resistance. And I’m almost certain to come away with some sort of injury.

Lying in bed the other night, I had a realization. I seem to have two modes of being: at rest, sitting or leaning or lying in one place, unmoving, still; or in motion, pushing, moving, rushing, doing, working, over-working. And it is very, very difficult for me to move from one state to another. It is not as easy as just get up and go or sit down and stop. It would be expected, with my disabilities, that I would have trouble getting up from a state of rest to start doing, but wouldn’t you think it would be easy to just stop myself from doing and rest?

But it’s not. I find it very, very difficult to stop moving, working, doing when I am already doing it. Very difficult. In fact, I actually have to work at stopping working. It’s like once the do switch is on in my brain, turning it off is about as easy as pushing that hurdling car. I get to a point where I don’t even notice that I am doing; my consciousness turns off and I am pushing forward on autopilot, working from habit, memorized routines, just going and going — and my awareness has been switched off, perhaps as a way to avoid feeling the pain?, but that means I don’t know when it’s time to stop. I don’t know when I’ve reached the critical point, when I’ve done too much, when I cannot do any more — often, I don’t know until my body just stops doing and I am confused inside it, trying to make it move and being denied, and it takes time for my consciousness to boot back up, to kick on and make me realize oh — I need to stop.

It has come to a point where I’ve learned that I need to stop before it feels like I need to stop, because my body and brain simply do not have the ability to sound the alarm for me. Even when my body can’t keep going anymore, no matter how much I push it, it still doesn’t feel like I can’t keep going anymore.

So I’ve been teaching myself, over the years, to force an override at a certain point — not based on what I’m feeling at the moment, but based on predetermined amounts of time/work that I believe is what I can handle on the balance. It’s hard, because I’m so stuck in that inertia of doing that I often don’t even remember to keep track of the amount of time/work that has passed, so I might forget for some time after I’ve reached that point, and then try to abort belatedly.

Either way, even when I’m “being good” and recognizing when that predetermined point has come, the act of overriding my natural inertia — my natural tendency to keep moving — is not as easy as flipping a switch. I actually have to go through a process of convincing myself that yes, it is time to stop, and yes, I really should stop, no, I should not keep going, and yes, it is okay to stop, really, it’s okay, and yes, I need it — and so on (and on, and on, and on). And then even if I am convinced, I have to try to push in the opposite direction of my body pushing to go and do. And pushing your body to stop pushing is about as technically-impossible as it sounds.

Now, convincing myself just that I should stop doing is a difficult enough thing to do. But add in a sense of pride… and a sense of guilt… and suddenly convincing myself that I should do (or stop doing) something doesn’t seem like such a hard thing in comparison.

***

I am one of two clerks working on our program at my office. Last week, for three days, my partner clerk was not there — it was just me running the show. And I happen to think that I am knowledgeable and capable enough to do a pretty good job of it. The problem is that we are severely short-staffed — the two of us in our corner of the building are already balancing a workload that should require four or five clerks. So when one of the two is gone, well, things move from chaos to crisis, so to speak.

I have an amazing supervisor. I absolutely adore her. And she was keeping an eye out for me. She kept coming back and asking if there was anything she could help with.

And for that first day, I kept saying no. And I thought it was legitimate! One of the main assignments is something she is not supposed to do at all, and another couple are things that I just thought would be more complicated to have someone else do than to do myself. So I said no.

And then my husband poked a little bit of fun at me — he works at the same office — saying that my supervisor had been talking with him (casually) and mentioned that she kept trying to offer help, and I kept refusing. And they shared a laugh, and he said yeah, that sounds like her. She’s not very good about asking for help when she needs it.

And I needed it. I just couldn’t convince myself inside that I needed it, that it would help, that it would be OK to ask, and so forth. I was already so overwhelmed and using so much energy, and I watched that car hurtling toward me and knew I did not have the strength required to push it the other way. Not on top of everything else I was doing. I did not have the capacity to make myself ask.

Because I’m not supposed to ask for help. That means admitting I can’t do my job. It means admitting my disability does make me less capable than other people. It means admitting my disability does exist and does affect me. And I’m not supposed to ask for help, because other people can’t spend their time and energy doing something for my sake. It’s not fair to them. I don’t deserve that, to have anyone other than me devote a single second to me. Other people would deserve that, but I am not deserving. If I ask for help, I am telling that person “I am worthless. Useless. I can’t do anything right.”

Asking for help means sending the message to the people around me that I am actually not as good a worker (as good a person) as I keep insisting to them that I am. That actually, I am inept and incapable. That I can’t do anything right, that I do mess things up.

Asking for help is asking for special treatment. Asking for help is asking other people to pretend like I deserve the same consideration as everyone else, and deserve to be considered just as capable as everyone else, while also demanding that they treat me differently, do special things for me that no one else gets to have done. Everyone else has to stand on their own, and here I am demanding that all these people prop me up and say that it’s just the same as that person over there standing on their own.

Every single time I need help, I have to fight these thoughts. Even if I don’t actually think them consciously. Every single time I need help I have to take time and energy to refute all of these thoughts to myself. I have to take time and energy to prove all those thoughts wrong. And that takes quite a lot of energy.

So I don’t ask. Even when I need it. Even when I know I need it. And even when I know, intellectually, consciously, that it is OK to ask for help, and that I should ask for help. I still don’t ask.

Because by the time I’m needing help, I’m already at my limits. I certainly don’t have any energy left to deal with that hurtling car.

I’ve had a handful of names throughout my life.

I was born “The [Mom's Maiden Name] Girl.” My mother had not yet picked out a first name for me. She was living in a hole-in-the-wall shack in a poorer town in agricultural central California — it was where she ended up after my father kicked her out upon discovering her pregnancy. Get an abortion or hit the road, he said. I knew this as a child, but it wasn’t until I grew older that my mother also informed me that he was threatening to beat her, to punch and stomp on her stomach to forcibly terminate the pregnancy. He tried to send her out with no belongings in a scrap car — which was to get her from her then-home on the northern border of Oregon to her adult sons’ home in central California. That’s over 900 miles. She was 43 years old and not in the best of health. My oldest brother — something of a giant — had to gather some friends to physically threaten my father for him to make sure that she was able to make the trip safely.

I’ve never had a moment’s contact with him. My mother claims that when I was around six years old, he called her, having “dropped by” and wanted to take me out for some ice cream with his new girlfriend (with whom he had been involved during the short months my mother was married to him). Fearing for my safe return, she refused. And never heard from him again.

During my first months, my adult sister lived with us — she has told me stories of having to brush cockroaches off of me while I slept. And it wouldn’t be until I entered adolescence that my mother and I settled down in a permanent home: before that, there was not one residence I was able to stay for more than a single year’s time; we hopped around looking for the lowest rents, and spent time living in spare rooms in each of my adult brothers’ homes (three times with one, once with the other).

When I was five years old, my mother married a long-time family friend. When she did so, he legally adopted me, claiming to be my father and being added to my birth certificate as such — whether my mother just went along with this or actively sought it for reasons of future security, I don’t know. Regardless, my name at the time changed from [Mom's Maiden Name] to [This Man's Name].

A little less than a year later, after struggling with him over finances — he wanted her to continue working to support his retirement, with no support for either her nor I — she divorced him. And there, a problem cropped up: in order to get my name changed back to my birth name, she would have to go to court to prove that he was not, in fact, my biological father, and have him removed from my birth certificate. As a newly single mother, she did not have the resources to take on that task. So, even after the divorce was finalized, I remained [This Man's Name] — and she kept that name as well in the interests of having the same name as her daughter.

And that name remained mine for the rest of my childhood, adolescence and early adult life. I hated it. I hated the sound of it, I hated the man it came from, I hated the way he had treated her, I hated the way we were stuck carrying his family name despite having no ties to this family whatsoever.

Ever since I can remember, I have been very eager to get rid of that name.

And ever since I remember, I have been wholly uninterested in weddings and traditional family life. I had no interest in boys or girls as a teenager. I never dreamed about “my day,” about dresses and flowers and music, about honeymoons and housewifery.

Part of that, especially as I grew older, was that I had a distinct sense of my undesirability. I wasn’t interested in anyone else because I thought no one else would be interested in me. As I grew more aware of my health and struggled with my increasing limitations, I never even entertained the idea that anyone could ever be interested in me — not to kiss me, not to hold my hand while we walked through the mall, not to cuddle, not to call me “girlfriend” or “go steady,” not to live with me, not to propose to me and certainly not to legally commit to be stuck with me for the rest of their life. Who the hell would want that? I was a burden; my health was growing worse; they would have to help take care of me, and I wouldn’t be able to contribute to the household enough to count as an equal. So obviously, I wasn’t on the market. It never even got as far as whether or not I wanted to be: it was simply a matter-of-fact acknowledgement of a reality that would never change, and thus there was no point wasting energy trying to change it.

All this is to say that I wasn’t dreaming of changing my name as part and parcel of the supposedly-universal little girl’s dreams of wearing white and being pampered and fawned over and having pretty pictures taken in rolling green fields. I never had those dreams. I just really fucking hated that name.

So before changing my name as part of an adult relationship ever became a possibility, I had three names to contend with. My father’s name (which I’ve never officially carried), my mother’s maiden name, and that other man’s name.

And not a single one of them was a name I wanted any part of.

My father’s name? Sounded pretty cool phonetically, but it was the name of a man who threatened to beat my mother, cheated on her pretty openly during their short relationship, had some pretty serious class bigotry going on, and was by all accounts — including those of his other children, the half-siblings who wanted nothing to do with me — a complete asshole. Yes: there’s a name I want to adopt!

My siblings (on my mother’s side) actually shared a completely different name — they were from a different father — my mother’s severely abusive first husband who thankfully died in a motorcycle crash, and every single member of my family is convinced it was for the better.

And then there’s my mother’s maiden name. The name shared by my aunt and uncle and family up in Oregon, the name I was born with, the name I went by for my first five years of life.

It doesn’t matter. I don’t fucking want it.

I want nothing to do with any of those names. I grew up in a severely emotionally controlling and manipulative family and experienced abuse to the point that I am just being introduced to the idea that I may have PTSD by my counselor. (I protested, and she said “OK, well, we don’t have to put a name to it, but…”) I have pretty bad dissociative issues I am only just beginning to explore; I escaped with moderate to severe anxiety disorder and panic attacks that don’t qualify as panic disorder only because instead of being random, they are triggered by contact with my family. I fit every other qualification.

I was stuck at home with a mother who afforded me no space to develop an individual self, unable to make it on my own away from her because of my disability. I couldn’t work, couldn’t afford rent, couldn’t live independently. I pushed myself to return to college earlier than I should have — after I dropped out the first time and spent months housebound — cutting short my recovery time, just to get away from her. I lived for a year on Social Security disability (after I was approved), $7500 in needs-based college grants and several thousand more in student loans before everything started to run out — money, my ability to continue school and maintain grades high enough in a busy enough schedule to qualify for further student aid — and I couldn’t stay out on my own anymore.

And then I spent a very painful and traumatic six months stuck in close contact with an abusive mother who was keenly aware that she was losing her grip on me and escalated the abuse accordingly.

And then? I was able to move 2500 miles the hell away from all that shit to live with… a man. Whom I married. And whose name I took.

I was able to move to a place I wanted to move to, to live with this amazing person I wanted to live with, who loved me dearly, who was respectful and affectionate and treated me like a whole person, a person of my own whom he just so happened to be enamored with, whose family was warm and welcoming and accepting and easy to be around…

I was able to choose where I wanted to be, who I wanted to be there with, who I wanted to be, what sort of life I wanted to live…

I chose the family I wanted to be a part of. I built the life I wanted to live. It’s a life I just so happen to love deeply, a life that has given me so much more opportunity than I ever had on the other side of this country, thanks to the person I chose to build it with.

That person? Is a man.

I took his name.

I don’t think that’s a capitulation to patriarchy. I don’t think that’s a compromise of my feminism. I think that is a demonstration of my feminism.

I have a name now. It is mine.

(Cross-posted at FWD.)

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

***

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

***

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

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

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

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

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

I’ve been in a lot of pain.

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

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

So, at work today.

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

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

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

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

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

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

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

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

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

They were talking about me.

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

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

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

The difference is, Dr. House is a character.

I’m real.

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

I am that woman.

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

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

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

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

It has been a rough several weeks for me. I was called back to my job on October 7. Around the same time, I developed an awful headache whose symptoms were entirely unlike my normal headaches (in kind; severity was … severe, but so are my normal ones) and only in the past two days has that faded — leaving in its wake a severe fatigue that actually came close to preventing me from writing six-digit numbers on applications at work yesterday.

Of course, when I am emotionally burned out, my body crashes. Serotonin screwup, adrenal fatigue, other stuff? I don’t know. And it has been a very emotionally turbulent two weeks. The temperature dropped without a warning, and the sudden winter weather has been an unfortunate sensual reminder of the awful personal events I went through last year, starting in October. It’s like I’ve been dropped into my own life one year ago, even as things have resolved or improved or smoothed out on that front… it ties only with my summer stuck in California as the worst events of my life, intense and injurious, dropping me into suicidal periods that (fortunately) ended up only scaring the hell out of me, rather than killing me.

And it has been a pressure of intense, high stress. I don’t know why I thought it would be safe for me to raise my voice in concern on very high-profile matters. Maybe the outrage finally got to be so strong it couldn’t stay quiet any more. But I did, and I can’t take it back now. It makes me wonder why I bother, ever, becoming involved in any space, rather than remaining in the background, quiet and invisible, slipping just out of notice. I can protect myself that way. It’s safe there.

Several people in my life, including at work, over the past several weeks who have been like watching flashbacks of my own life during its worst periods. Echoes. There’s the major and severe, mimicking the deeply abusive behaviors I could never escape from. And there’s the passing, the minor, the couldn’t-possibly-be-their-fault — speaking habits, common phrases, facial expressions — though, to be honest, even those wouldn’t be triggers if they didn’t come immediately after the behind-the-back scheming, theorizing about conspiracies, the twisting, the lying…

Why did I ever think I could do this? Why? What could I ever criticize? I am not just imperfect, you must understand. I am broken. Broken, broken. How can I ever expect to speak critically and not have that eye turn back on me? Why do I? When did I lose those self-protection skills? I used to know how. I used to remain highly disciplined.

But something gave me strength and security. And sometimes, that’s the worst thing a person can be given.

I don’t even know who my real self is. I never have. I’ve walled her off, time after time, building stronger and higher and deeper, covering my tracks, looking over my shoulder, making sure that nobody even knows she exists… if she doesn’t exist, she can’t be harmed.

I don’t even know whether she exists anymore.

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

***

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

This includes the contributors and the commentariat.

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

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

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

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

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

W-O-M-E-N.

You can read, right? Spell it with me.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

RETARDED

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

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

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

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

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

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

CRIPPLE

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

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

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

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

CRAZY

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

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

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

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

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

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

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

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

That’s just to start.

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

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

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

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

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

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

All annotations abbyjean’s except where noted in parenthesis.

I have been organizing old files and stumbled across this. Written during my second and final attempt at attending university, July 2005.

Purpose Statement: I want my audience to understand fibromyalgia.

Organizing Question: What is fibromyalgia?

Introduction: When I woke up in the morning on October 5 last year, I couldn’t even lift my head. My neck hurt so bad that I couldn’t stand to move it in any way. That day was the day of my midterm in this same class, but because of extreme pain and exhaustion, I hadn’t been able to bend over a book to do my reading since mid-September. I was in no condition to walk to class, much less bend over the exam—and I had been this way for three weeks. The reason I was having so much trouble? I have a condition called fibromyalgia.

Preview Main Points: Today I will be going over the symptoms of fibromyalgia, some misunderstandings about the condition, and finally the biochemistry as we best understand it today.

1. Fibromyalgia is a condition that causes widespread pain and fatigue.

   1. Chronic pain: It’s everywhere, and it never stops. There’s a constant, dull, all-over background pain. Overexertion pains—random pains. Stabbing pains, shooting pains, throbbing pains, aching pains, searing pains, burning pains—think of every pain you’ve experienced in your life, and cram all that pain into a month. That’s probably a light case of fibromyalgia.

      1. Dr. Devin J. Starlynal, a fibromyalgia/chronic pain specialist, published her book Fibromyalgia & Chronic Myofascial Pain Syndrome: A Survival Manual in 1996. She says, “Chronic pain states are quite different from acute pain states. When you know the pain is eventually going to end and that you will recover and the pain will be gone, it is easier to tolerate the misery…. You do not ‘get used’ to the pain if you have a chronic pain condition. It becomes harder to endure.”

   2. Fatigue. When you think of fatigue, you think of being tired. The fatigue that comes with fibromyalgia is far more than just “tired”—it’s a state of near-absolute exhaustion, feeling like not one bit of energy is left in your body.

   3. Other symptoms and related conditions: Migraines, cognitive difficulties, Raynaud’s (extreme sensitivity to hot and cold), depression and anxiety

2. Fibromyalgia is often misunderstood.

   1. FM is often cited as a musculoskeletal condition, an inflammatory condition, or rheumatic. All three of these descriptions involve actual injury or dysfunction within the muscles, bones, and joints. Fibromyalgia directly affects none of these.

   2. FM is not the same as Chronic Fatigue Syndrome. The two syndromes are related, but continued research has begun to separate their causes, their functions, and their effects. FM has been called a condition of “physiological hyperarousal” while CFS is described as the exact opposite.

   3. “It’s all in your head!”

      1. Dr. Bernard R. Rubin, Professor of Medicine and Chief of Rheumatology at the University of North Texas Health Science Center, says in his 2000 book Handbook for Fibromyalgia and Chronic Muscle Pain, “Traditionally, Western physicians have divided medicine into two areas. In illnesses, there is either a physical problem—infection, injury—to the body, or a psychological problem. If no evidence of abnormality shows up on lab tests or x-rays, then the problem must be psychological. Therefore, according to traditional medicine, when a person comes to a doctor complaining of fatigue and widespread muscle pain, along with a number of other vague problems, and nothing can be found on the usual tests, the person is obviously suffering from a psychological disorder.”

FM is often dismissed as being psychosomatic—when physical symptoms show as a result of mental ones—hypochondria, imagination, or otherwise not real. This is simply not the case. Mental illness can exist alongside fibromyalgia, but that does not imply a causal relationship. Despite all of the misunderstandings of fibromyalgia outlined above, there is evidence established that fibromyalgia has real physical causes.

1. Fibromyalgia is a disorder of the central nervous system.

   1. Central pain amplification: In its brochure about fibromyalgia, the National Fibromyalgia Association says, “Most researchers agree that [fibromyalgia] is a disorder of central processing with neuroendocrine/neurotransmitter dysregulation. The [fibromyalgia] patient experiences pain amplification due to abnormal sensory processing in the central nervous system.” (http://fmaware.org/fminfo/brochure.htm)

      1. Substance P: “pain feeling” chemical; higher levels cause a sufferer to feel more pain

      2. HPA Axis: Hypothalamic-Pituitary-Adrenal Axis, has to do with regulation of stress

         1. Adrenal Fatigue: “fight or flight” feeling, overproduction of adrenaline, then the body overcompensates by underproducing it, meaning very low levels of energy

      3. Serotonin has to do with depression but it also acts as a screening agent for pain—higher levels make a better pain filter , so lower levels mean more “bad” signals get through.

   2. Despite knowing this, we are still unsure of the cause of fibromyalgia. A great deal of theories exist. Not nearly enough evidence has been established to conclusively prove any of them.

Conclusion: I hope that in informing you about fibromyalgia’s symptoms, misinterpretations, and biochemistry, you have learned more about the condition today.

In closing… Fibromyalgia has often been called the “invisible disability.” It is invisible, as it causes no physical deformity, so you can’t tell that someone has it until they tell you. It is a disability, as the central amplification of pain can grow so bad as to prevent someone from being able to work—or attend school. To those who don’t know about the condition, a fibromyalgia sufferer just seem lazy or inactive or to complain too much—in fact, they may be pushing themselves beyond their limits; their limits are just lower than yours.

Thank you.

Things I’ve been meaning to say for some time.

1.

I am really bad about keeping up with my blog roll, followers, and reading. I am usually up to a week behind in Google Reader. I take a long time to finally get around to subscribing to the RSS feed on a blog I have been reading and loving for some time. And even then I take awhile to add it as a link. I also have the problem of figuring out how heavy a particular blog will be in content — in either length or frequency — and whether I will be able to handle adding it to my reading load.

Last year before I began my full-time job, I went through and culled every blog I could bear to part with (mostly the white liberal boy-blogger types, such as Washington Monthly) that aren’t bringing any news I don’t get from other sources, and aren’t giving me a perspective outside the mainstream dominant-group perspective (that is: Western, upper-middle class, white, cis, straight, abled, educated, etc.) This means I have a lot of trouble in that I keep coming across new blogs and writers I want to follow — but I honestly can’t get myself to stop reading the other people I still have!

There are people I come across, or people who link to me or follow me, and I take a long time to finally check out their sites, and if it appears to be a fairly heavy/frequent blog I usually put off adding it to my reading. :-\ But I am not ignoring anyone on purpose.

2.

I have a lot of trouble writing crisply and coherently on a consistent basis. Sometimes, the words flow without trouble. But most times, I am really struggling to translate thought to speech. A lot of this is what is often called “fibro fog” or brain fog. It’s a state of cognitive impairment common to fibromyalgia patients that makes it difficult to focus or concentrate, makes it hard to recall words, makes it hard to organize thoughts. It is so named because it feels like a thick, heavy fog settling in on your brain. It is hard to push through, hard to see where you are heading and how to get there.

I described it in my about page thusly:

I often have difficulty translating ideas into coherent sentences or pulling up a particular word important to conveying my meaning. My writing may be imprecise at times, like describing the buildings, greenery and landmarks surrounding my house without being able to describe the house itself. When I am angry it gets very bad — or maybe I get angry because it is so bad — and I can grow very frustrated at being unable to untangle the mess of ideas in my head and translate them to cohesive, understandable sentences.

Another aspect of it: I feel like my brain groups words together based on similarity in meaning — but files away all but one of those words. So I have trouble speaking precisely, using the right word for the meaning I am trying to convey, because I can only access the one word from that group, and no matter how hard I exert myself I just cannot pull up any of the other words. And the way my brain organizes these grouped “files” is haphazard, so I may not even be looking in the right group, so to speak — it may just be a group with a loose association to the group that contains the accurate word for whatever concept I am trying to express.

This gets very frustrating, to say the least.

There is another, much more personal reason I have for having trouble translating concepts-inside-the-mind into words-on-the-outside, having to do with my past and childhood, which I may elaborate on in the future. But that will have to be a long post, and I don’t have room for it here, at this time.

3.

I am a flake.

There is no way to get around it. It is who I am. I always have been, and always will be, a flake. No amount of effort, will power, meditation, medication, or otherwise will ever change it, because it is fundamentally what I am.

For a thousand different reasons, physical and mental and emotional, legitimate and il-, excusable and un-, understandable and not, I simply cannot hold true to every commitment. I am apt to forgetting things — anything — my cell phone when I go out, or to close the window in the kitchen when I turn on the air conditioner, or to read or respond to an email (no matter how important; ask both my husband and my best of friends, and they will inform you that they, too, have had it happen — often), to participate in an event or project I expressed interest in … even a very important doctor appointment for which I have been waiting for a long long time. Just last month I actually triple-booked myself at 2 p.m. on the 27th, for a doctor’s appointment, counseling and physical therapy.

I am a flake. It’s what I am. No matter how important something is, how much I care about it, how many check-points I set up to ensure I remember to do it. I am still prone to forget, delay, procrastinate, lose track of.

I’ve given up on changing it, because all it did was foster guilt and self-worth criticism and never actually changed the behavior itself. So what the fuck good was I doing — to myself or the other people who may be affected?

I am a flake. It is who I am. It will never change. And I’m not going to apologize for it any more.

That’s all for now.

You’ve undoubtedly heard the news already. A history of domestic violence or C-section are considered, by private US health insurance companies, to be “pre-existing conditions,” which are used as a basis for denying coverage, rescinding coverage, charging higher rates, or other discriminatory practices.

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.