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.)

They are fibroadenomas, which are benign lumps formed by a combination of glandular and fibrous tissue in the breast. There is some evidence they are either formed or fed by estrogen in the body — much like the endometrial implants in my pelvis. I guess I’m just too woman-y for my own good. Anybody need some spare estrogen?

The largest one, at one o’clock on the left, was 2.2cm at my last ultrasound (I am supposed to return every six months, indefinitely, to monitor their size/location to make sure nothing suspicious is going on). It is now 3.2cm, and causing enough pain that it is difficult to lie with any pressure on the breasts (on my stomach or too far to my side) or wear my normal bras.

So it’s coming out. On Wednesday.

I’m nervous. To say the least. Partly for pure vanity. There are very few areas of the body that I unequivocally like. This is one of them. More than likely, the most I’ll end up with is another scar (got plenty of those, don’t particularly care) and possibly a small dent.

I’m both moderately anxious and morbidly curious as to how this is going to turn out.

Today’s roundup brought to you by oh look a feather toy!

An acquaintance of mine shared a post that linked to Peter Singer’s latest piece in the NYT Magazine, “Why We Must Ration Healthcare.” Most of the article focuses on the fact that health care is currently rationed in the U.S., whether by price or by less tangible factors such as ER wait times. I don’t disagree with that part; that’s nothing more than a clear-eyed look at the reality that the American health care system has barriers to accessibility. Where Singer goes off the rails for a demonstration of Able-Bodied Privilege 101, however, is when he discusses how to put a value on human lives as a precursor to putting a value on health care. In order to demonstrate the utility of quality-adjusted life-year (QALY) in rationing health care, he uses the example of how an able-bodied person reacts to a hypothetical situation in which they become quadraplegic, and how their desire to live changes. He then goes on to present a situation in which persons with disabilities (PWD) are damned if they do and damned if they don’t: he suggests that if a PWD is happy with their life, they don’t need any treatment that would improve their lives, and if a PWD is not happy with their life, then it would be wasteful to spend money on treatment that would improve their lives.

I consider this a must-read for anyone who is new to disability rights. Pizza Diavola does an excellent job showing where Singer’s logic simply falls apart, and in fact his arguments do not make sense without assuming the supremacy of the able body. But disability is not an inherently bad experience; it only becomes this phenomenon of tragedy and suffering when society refuses to provide support for people of all sorts, rather than upholding the narrow and unstable health ideal.

Following Singer’s logic, we would pretty much never seek to improve our lives in any way because to do so would admit that we were not happy with our lives beforehand, and if we were happy with it, then it would be useless to do anything to change it. How this is seen as a rational analysis of New York Times caliber, I’m not sure. But apparently Peter Singer hates the wheel, the microwave oven, cotton fabric (admitting that life wasn’t good enough without versatile and insulating body covering!), the printing press, public education, agriculture, language, music, sunscreen, and buildings (admitting that life wasn’t good enough without shelter from the elements!). Among other things.

But because disability is constructed as a tragedic deviation, we end up with nonsensical, circular arguments such as these. And it has unfortunate influence, and will further marginalize people on the basis of their inherent inferiority and thus forfeited right to life (any life, according to Singer, who would have us all killed or otherwise eliminated rather than complicating things for the currently abled — and no, unfortunately, this is not exaggeration or extrapolation; he has advocated exactly this).

Help Find the Cure for Disablism!

Disablism is a common disorder which can begin in early childhood, though its symptoms are often much more marked in adulthood. Without preventative measures, disablism can grow into a chronic condition that becomes more difficult to cure with time. Early detection and proper treatment are key to helping those with disablism lead stronger, more productive lives.

FAQs

Is disablism contagious?
The jury is still out on this question. While some epidemiologists believe disablism may have a contagious aspect and may spread virulently, other researchers emphasize individual health habits and responsibilities.

What is the treatment?
Treatment varies by the degree to which the patient is affected. Treatment focuses on creating new, nondisablist behaviors. For patients unrectifiably deficient in empathy, legal remedies may be required. Please ask your doctor for more details.

What can I do?
Most importantly, educate yourself about disablism. Ask your health care provider, “am I disablist?” Equally important, watch for early signs of disablism in your loved ones and seek early treatment. Disablism is much more cureable in its early stages than when its victims become homicidal or harm others. In addition, help raise awareness about disablism. Discuss disablism and its harmful effects with others.

For more information and resources on disablism, call the Cure Disablism Network at 1-555-BE HUMAN.

This clip from British tv show That Mitchell and Webb Look has made the rounds as a short and sweet parody of gendered advertising. I think it is also useful as a look at medicalization and the way medical conditions are presented in popular culture.

Transcript:

[Blonde, average-looking woman standing in front of white background, reacting to voiceover by crouching and grimacing, with graphic overlay of radiating circles emphasizing different areas]
Woman: Ow. My stomach!
Man’s voice: Do you suffer from gut agony?
Woman: And my head!
Man’s voice: Tension head? [Woman nods, grimacing] Got that bloated feeling?
Woman [beginning to look slightly surprised and self-conscious]: Ooh…
Man’s voice: Inevitable wrinkles? The beginnings of lady moustache? [Woman covers lower half of face with hands] And now you’ve pissed yourself again? [Woman crosses legs] Women. You’re leaking, aging, hairy, overweight, and everything hurts –
[Young boy walks on set in white dress shirt splattered in colorful stains]
Man’s voice: — and your children’s clothes are filthy! No wonder men long for other, less clammy women. For God’s sake, sort yourself out.
[Image appears on screen of assortment of several hundred personal care products, captioned "APPROX $279.99, THE LOT."]
[Woman walks onto set toward couch, with large, bulging full tote bag on one shoulder]
Woman [tiredly]: Now I’m free to live my own life, my way! [falls back onto couch]
[Scene changes to white man in bathroom with razor]
Man’s voice: Men! Shave and get drunk!
[Man has satisfied look on his face as he opens medicine cabinet, finds glass of beer sitting inside, picks it up and smiles smugly, taking a sip]
Man’s voice: Because you’re already brilliant.
[Man smiles widely at camera as woman's hand appears, groping his chest]

ginmar speaks movingly about mental illness, military veterans, and the phenomenon of “fallen women.” A few pieces; there’s much more.

It’s a pain in the ass to experience. Frankly, you’re no fun to live around during this. I mean, people have been brought up on movie mental illness, where you turn into a sweet, soulful, funny, insightful, tragic, tormented character who Teaches Important Lessons, before dying in a beautiful way that gives the hero or heroine a chance to win an Oscar.

It’s especially bad if you’re a woman, because you’re supposed to live for others, do for others, and do this al behind the scenes. The fact is that women who transgress in some way—bad mothers, not mothers, convicts, the sick, the non-sexually rebellious—-are often abandoned. Women are supposed to stand by their man. What goes unsaid, what’s kept secret is that ill women are resented, dumped, and have to face a dual burden of illness and ill-treatment. There are approximately 6,500 homeless female veterans of this war. Homelessness is often the worst and final stop on the mental illness ladder. It’s bottom. Then, too, homeless women in general are ignored. When the truth is overwhelmingly awful and about women, people just shrug their shoulders and put it down to life. When women get angry about this treatment, they often find the mentally ill label used to stigmatize them.

[...]

Suicide tidied things up neatly. By killing herself, the victim had provided her family with a tragedy over which they could weep, instead of an inconvenient complication who aroused questions that were literally unthinkable for the thinkers of the day. With her gone, so was any reminder.

[...]

What’s interesting is that both male and female soldiers are often regarded in this way: better a flag-draped coffin than a living, complex, and often angry veteran. What a drag. Better a tragedy than a complication [...]

That’s the work of a certain class. The resentment is very much the attitude of the person who discovers that those who serve are also those who know their worth. That wasn’t supposed to be part of the deal. You’re supposed to work round the clock, then disappear when not needed, grateful and humble for scraps from the table.

Which is why maybe soldiers like me, especially women, are often greeted with sadistic gloating when we crumble.

***

We had a really good discussion about nondisability. It got derailed, a bit, because it depended on our ability to reasonably define disability. And it’s a subject that has come up in every discussion we’ve had these couple weeks. What is it?

I advocate an intentionally overbroad definition of disability. And I definitely see a tendency, with certain medical conditions, not to identify — on that inner level, what “feels right” — as disabled.

I support every person’s right to self-determination, to define their own experiences, and to identify however feels most right for them. I do not want to try to pressure people into identifying in a way they do not feel comfortable. But I do think that part of this tendency, this reticence, is rooted in a sort of ableism. Not ableism as in “internalized negative feelings about PWD” — but ableism as in “a certain understanding of how the world works and how society is/should be structured” … or, you might say, a certain model.

I want to explore a few things — explore our assumptions behind the word “disabled.”

1.

Think, for a minute: visualize a disabled person. Just a generic idea of a disabled person. What would you say are the requirements to qualify as disabled?

Do you have to be disabled — in a dictionary definition sort of way? Disabled, unable, incapable? Unable to work, or unable to participate in social activities, or unable to take care of oneself? Is there a certain level of un-able-ness one must reach to qualify as disabled?

If so, what do you call the people who don’t reach that level — but who share many, if not all of the exact same problems with accessibility in society, who face the same obstacles in their path, the same ignorance and hostility? The people who have the same condition, but face different accessibility problems because they are trying to navigate the workplace, living independently — who are able to do these things — but who still have to fight with the outside world to be able to live their life how they want to?

Are these people disabled? No? Are they abled, then? Are they privileged over the people who meet that level of un-able-ness?

Am I “temporarily able-bodied” because I can push myself enough to work full-time?
Because I can walk? Drive? Prepare meals? Go to sports events and concerts?
What about the fact that I still have to fight with my doctors over medication? That I still have to approach HR at work to tell them about everything I need to be able to work there?
What about the fact that without the drugs I am taking and my TENS machine and my access to health care and workplace accommodations and accessible parking, all of a sudden I wouldn’t be able to do those things anymore?

Is my disability about my inner feelings when I get home and slouch in pain — is it about what is going on in my body? Because I still have pain, whether I am well-treated and working or untreated and housebound. I still have fatigue. I still struggle when I stand up from a sitting position, still need help getting out of the car if I haven’t taken at least a few painkillers already that day. All that stuff is still there.

Or is it that my disability something beyond me — not having to do with me at all? Not defined by what is going on inside my body, but defined by whether society is working with my body or working against it?

2.

I’m going to let you in on a secret. A lot of us people who do fit the classic dictionary definition of “disabled” — don’t feel “disabled” either. We don’t always feel un-able. We feel like “just people.” Normal people living a normal life, just happen to have some sort of neurological or physiological difference, but that isn’t our defining characteristic or something that is always forefront in our minds, it’s just one part of us that doesn’t always make that big a difference in our life at all.

3.

Remember, briefly, the social and medical models of disability.

Under the medical model, a person must justify their claim to disability. A person must fit neatly into a narrow diagnosis with a Latin-based name. The person must be cleanly categorized. Their experiences must fit a prepared check list.

The medical model says that your body fails to be normal in this particular way: so we must devise a way to force it to be normal, and that will solve the problem.

Naturally, such an approach to disability will wind up excluding a good many people who don’t fit those boxes cleanly, who appear close to normal — and that just can’t be right; there must be a logical explanation, like that they are over-worrying, imagining things, that they like being sick and want the world to treat them with kid gloves. After all, there is no proof that they deviate from the normal — so they have failed to justify themselves as different.

The medical model, in this way, denies community and services to people who still face considerable obstacles to full participation in society because they have failed to prove that they deserve that “special treatment.” They have failed to prove themselves as disabled enough. They aren’t “other” enough to be Othered.

The medical model imposes strict and narrow definitions — which become boundaries which must be policed.

What do you do when you’re caught in the middle? Different, but not different enough to be Othered, but still needing services (benefits, accommodations) which are only given to Others.

4.

Informed by the social model, “disability” becomes a marker not for condition (mental or physical) — not for “what I feel inside, what I experience inside” — but instead for the fact that our condition is maligned or neglected (or both) by the rest of society.

Disability is not a matter of my condition, but a matter of the group I am assigned because of that condition.

Perhaps it could be said as such: Disability is not a condition, it is a status.

5.

The classic analogy to explain the social model is this:

Many sighted people have less-than-perfect sight. If assistive devices — glasses or contact lenses — were not so widely available and accessible, many of these people would be prevented from full participation in many aspects of society.

But because society sees fit to prioritize this assistance, to make sure glasses/contacts are widely available and accessible so that every less-than-perfect sighted person can have clearer vision — because society decided that no person should be blocked from access because of hir different vision — this condition is no longer a disability.

This is a useful thought experiment. But it is not a perfect analogy. Many blind people still face considerable access blocks. This only really applies to people who are sighted, but whose sight is not precisely “normal.” Perhaps because society can, for the most part, bring abnormally-sighted people to normal-sightedness, whereas it cannot do the same to blind folk.

There’s a lot to explore here.

6.

The word disability isn’t perfect. I don’t know that I would choose it, were we to start over with a blank slate. Nor do I know that most people who are active in the disability community would choose it.

What I do know is this: people who don’t feel, literal-dictionary-definition disabled, embrace the word and run with it. They can make it something all their own.

Queer is a less-than-perfect word when you consider its literal definition, too. Yet the queer community has decided that they’re gonna take this thing and make it into what they want it to be. And they’re making something pretty damn awesome.

I don’t feel dis-abled. I feel people-are-willfully-ignorant and access-to-good-care-is-restricted-in-unnecessary-ways and the-medical-industry-has-no-respect-for-me. Among other things.

And I’m sure other disabled folk feel why-isn’t-there-a-wheelchair-ramp-for-this-public-use-building and nobody-has-to-accommodate-my-needs-until-they-get-sued-why-don’t-we-have-an-oversight-board-that-makes-them-do-it-right-from-the-fucking-start and you-aren’t-providing-alternatives-so-I-can-access-your-lecture-even-though-I-can’t-[hear-what-you-speak/see-what-you-write/be-there-in-person-at-all]. Among other things.

People who identify as disabled (or are identified as such by society) don’t necessarily always think the dictionary definition of the word applies to them. There are disabled people in wheelchairs or braces who still work, still have families, still go to parties. There are disabled people who appear totally abled yet can’t work, can’t perform certain self-care, and so on.

The word “disability,” in the disability movement right now, already refers to a great variety of individual conditions, abilities, approaches…

And for the most part, when a person appears whose condition challenges the current boundaries of abled/disabled, the disability community is completely ready to revise their assumptions and welcome that person (and hir companions) into the movement.

Because, here’s the thing…

7.

The disability movement has a lot to offer to a lot of different people — not all of those people who may identify as disabled.

And this is part of why I do not want to pressure people to change their identification. They don’t have to identify as a disabled person, or a person with a disability, to still become a part of the disability movement, to benefit from it, to help move it forward.

What I am wanting to do is not change people’s minds about how they individually self-identify. What I want to do is explore the cultural phenomenon that is certain groups rejecting the label of disability.

Anyway: the disability movement is working hard to change the way we approach the world. From an approach that excludes non-normal people to an approach that stops INcluding by certain standards and starts just treating all persons as fundamentally human, period.

Under the current system, when a woman becomes pregnant and plans to keep the child, we expect the child to be free of disability. What’s that refrain from the supposedly-gender-enlightened? “I don’t care whether it’s a girl or a boy, as long as the baby comes out healthy!”

When we encounter a person, we expect that person to be abled. When we imagine a “person” — just a generic, default person — we imagine that person as able-normative.

Currently, things go like this: 1. World expects “normal.” 2. Non-normal people come along. 3. Oops!

What disabled people want is more like this: 1. World is prepared for any number of different things. 2. We come along. 3. Hey, we were expecting you!

This approach is what defines the disability movement. We want to change the world so that the world stops treating us as unexpected — and therefore a disappointment — and therefore has not prepared for us — and therefore we have to constantly fight with the world to make it change every little individual thing it has set up wrong.

This approach, applied broadly, has benefits for so many more people than only the classically, dictionary-definition disabled.

This is the world I want to live in (bold emphasis added)…

My body isn’t the enemy, I realized.

It’s not my physical self that creates all my problems.

It’s all the external expectations of it.

Disability isn’t the result of individual defects, deviations from the able-bodied norm. Disability is the result of a society that fails to accommodate these differences.

What if we saw these differences as variation, not deviation? After all, we fully expect our children to be born with any number of different eye colors. Why is it any less when it comes to physical and mental abilities?

Can you shape a world in your mind where there is no norm? What does it look like? How does it differ from the world you live in today? What do you expect of people as a whole in order to support those currently disadvantaged?

The more I think, the more confused I become. It seems impossible to structure society so that everyone is brought to a similar level of ability across the board. But it does seem possible to structure society so that those fully-abled work to make up for those straightforwardly lacking, and everyone works with each other in full expectation of a wide range of ability across the populace, and all of this is seen not as hassling and burdensome, noble and heroic when someone takes it on—but as mundane, everyday, simply expected, no different from separating out your recyclables or driving on the right side of the road: something that everybody does, because it isn’t that hard to do, and it benefits yourself as well as those around you, so it’s stupid and even outright reprehensible not to.

That is the world I want to live in.

[Reading back, I cringe at the use of the words "straightforwardly lacking." Proof that we are all still learning, still building.]

What if things did happen that way? What if we just rushed to give, knowing that those around us would rush to give back?

and in this POV, the centering of individualism falls apart — because that’s not what life is about. life is give and take, push and pull, you do this for me (that i don’t do well/don’t like to do, but that i want/need) and i’ll do this for you (that i do well/like to do, and you want/need).

disability, really, when you get down to it, is the ultimate unraveling of that ball of individualism — it FORCES you to look at all these little things that go into the living of a life, and realize that not all of them are yours to do or yours to control — and also to realize how many of those little things YOU affect for OTHER people’s lives — and to finally give up, and fall back into the arms of the community.

it means you have to stop looking at things as “mine, yours, this person’s, that person’s” etc. you have to stop keeping the damn tally — and just rush to give, knowing that those around you will rush to give back…

so many people are afraid to admit that ultimately, they DO depend on the people around them, and their accomplishments are not solely their own, and the things they do, affect people besides themselves. but it’s all true! and it’s not a bad thing, if you look at it the right way.

This is everything we are trying to change.

And when we are successful: it will be good for so many people. It will benefit a great many, people who might not consider themselves part of this movement, but who will see their life become substantially easier or better, because this movement has destroyed the system that puts obstacles in their path.

8.

There is a lot people can learn from the disability movement — even if they don’t consider themselves a part of it.

This is why I, and others, explicitly tie our disability activism to our feminism. Believe it or not, there are things that non-disabled feminists can learn from disabled ones about how to refine, how to better our (not their, OUR) feminist movement.

There are things the disability movement is accomplishing that the feminist movement has fallen short on. Things that disability activists are paying attention to that feminists have forgotten.

And it makes a difference in women’s lives.

9.

There are substantial immediate benefits to individuals, as well. Many of you who do not feel “disabled” nonetheless benefit directly from the Americans with Disabilities act and other non-discrimination legislation. And that’s only in the realm of the state (legal sense).

Consider the pharmaceutical industry. The alternative medicine industry. Consider protections on health insurance that prevent companies from discriminating against people with pre-existing conditions or prevent them from denying certain treatments.

These are all things the disability movement has had part in. Often, the disability movement has been the sole force pushing for these things — when other movements fall short, and forget us.

And there is, therefore, substantial benefit to involving oneself in the disability movement. Because it is working for you. So it will do good for you and for us if you directly engage with it — help it refine its purpose — help direct its actions — help challenge preconceptions.

If you will stand with us, if you will be — a friend, or a family member — whatever role you feel comfortable taking, we will stand, sit, lean or lie beside you. We will be there with you, however you identify.

We want more people to engage with us — on an honest, good-faith level.

Some of those people will find themselves beginning to identify as a part of this movement, as a person with a disability. Some people will not, but will remain our friend, our ally.

No matter which: we are happy to have you.

***

ETA: I really should have included a link to this post from Joel at NTs Are Weird — from the perspective of the autistic community. I ain’t the only one beating this drum! I remember reading this post a long while back, and it has informed my politics a great deal. And I think it is necessary reading for anyone engaging with the disability movement. And he does a great job wrapping up the many elements of this post! ;) Take it away (bold emphasis mine):

Welcome to the disability community! [...]

Yes, that’s right, you’re DISABLED. Yep, you can pick that word apart and tell me why you aren’t, but, trust me, you are. And, no, I don’t mean that you are less or more functional than anyone else. I mean that you are part of a community defined by society’s institutions and programs, a community formed because of our minority status and the fact that society expects certain strengths and weaknesses, and anyone who doesn’t have that same pattern of strengths and weaknesses is going to have trouble in this society.

Yep, that’s the social model. It’s not the “OH MY GOD, I AM SO BROKEN AND LIFE SUCKS AND I WANT TO BE NORMAL BECAUSE EVERYTHING WOULD BE WONDERFUL AND I WOULD HAVE LOTS OF MONEY AND A GIRLFRIEND AND A NICE CAR” view of disability. But it is recognition that we have trouble in society as it is currently set up. You’ll also notice that it is not a view that accepts society as a static, unchangeable, and morally good entity, but rather as an institution that can and should change – even when people have a hard time seeing how it could.

In addition to this, I want you to know that there is “nothing new under the sun.” You don’t need to reinvent disability theory [...]

One example – although the victory isn’t yet fully realized – find out why there public transit has to at least make *some* effort at accommodation in the US. Yep, I know it still sucks, and there are tons of problems – I’m not saying anything different. But I can assure you of this: Without good advocacy, there wouldn’t be a wheelchair lift on any bus except one owned by a nursing home – and even that one might not have one.

Find out why people with cerebral palsy can go to US schools today, even if their natural speech is hard to understand, thanks to assistive technology and good law. Sure, schools, technology, and law aren’t good enough yet, but they are way better than they were 40 years ago. Why?

Better yet, learn how you can make a bus in your city more accessible both to yourself and to someone with a different kind of disability. Learn about your schools and what can be done to help others with disability. Not just autistic people, but people with all types of disabilities. Do you know what you will find if you do this? You’ll find out quickly that it also helps you, even if that wasn’t the goal of the movement.

For those of you who are already doing these things – thanks! It’s good for us to stop reinventing the wheel once in a while.

(Cross-posted at Feministe.)

Our focus is often (and should be) on the women targeted by this hate, the women who suffer under this stream of threat and this actuality of violence. It should be focused on the actors and co-conspirators as well. Aside from those who take direct part in that hate or violence, another important piece of this is the effects of this misogyny upon the male in general. What misogyny does to the male identity and psyche and sense of peace and self-love. After all, the Female is not hated in a vacuum. So, too, is the Feminine, entire. And that cannot be walled off to one gender. This loathing, this hatred points back to what we know to be part of our natural being.

Men (as boys) are “asked” to join the oppression (under great threat of both social humiliation and physical violence and over and over, too) and to do this of course, we must snuff out/suppress the Feminine in ourselves. This is, of course, a great pain and loss to a human. And as this loss cannot be mourned by implied decree, this pain becomes a bitter, perverse mess that is blind to itself. And so men not only join the hate against women, but they then envy women for their freedom (to still be allowed) to be expressive, emotive, beautiful, affectionate, relaxed, vulnerable. And the loathing to self-loathing ties to envy ties to sorrow and loss and is given ground, and men are emotionally insane when modeled as instructed. And they act out this insanity even when they don’t know why. It is because they have too often been prevented from even knowing who they are to begin with.

…

For if a man cannot love the feminine aspect of himself, nor can he love a woman. And if he is hiding from that half of himself, he cannot fully see a woman. And if he would abdicate half his power, he is weak to the point of failing.

…

Because Colonization (and Patriarchy, too) are about control. And thus, Prop H8. And thus stiff collars and the Western Modes of acceptable and authoritative dress. And thus stark unforgivable lines. And thus dichotomized stances and laws that no person lives under comfortably and organically, unless they crave unnatural and aggravating wires strapping them down to the earth, making up for all the strength they have abdicated and would have used to guide and know themselves otherwise….

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, and everything i use to take care of it.

Tomorrow is Love Your Body Day. The boundaries defining NOW, the sponsoring organization, are widely known to be drawn (conveniently) around the Western ideal of the financially privileged white life. But, much like feminism as a whole, I feel there is something of value at the core, something of use to all of us.

I find little use in campaigns and projects claiming to sprout from a respect and appreciation of the human body, which decry an unfair media ideal, but whose aim seems to be — not to deconstruct that ideal in an attempt to destroy any ideal whatsoever — but to deconstruct that ideal so as to replace it with one more conveniently molded to their own experience.

I do not want to replace the size zero ideal with a size six ideal. I do not want to look at the impossibly tiny waists and replace them with well-defined waists always significantly thinner than their accompanying hips and bosom. I don’t want to look at the airbrushed, overtanned, bleached blonde ideal and replace it with an ideal that includes pores and a range of hair color, but only on caucasian and white-skinned bodies, which are still skinny and perfectly toned, with smooth caucasian hair that’s allowed to be stick straight to a little wavy, and always the bright open eyes and blinding smile, always a smile.

Instead of an ideal, instead of merely shifted expectations — we need to blow that ideal to pieces, and in its place, put a purposeful lack of expectation, put a willingness to consider, put a confident knowledge that one may be faced with anything, anything, and put a curiosity, a sense of wonder, an ability to find beauty, rather than have it delivered.

Bodies, bodies, bodies. When we tell one person her body is beautiful because it is not this, or that, or that other thing, we tell another person whose body is one of those things that her body is not beautiful. When we tell one person her body is what we should be celebrating, we tell every other person whose body is different that they are still deficient — only in a different way.

(And as an aside: when we tell one person that real beauty is natural beauty, no modifications, no adaptations, no change whatsoever — we tell every other person on earth, every person who ever does any single thing to change their body, how it looks, what it does, how it feels — we tell them that they are not only deficient — they are committing a grave moral sin. Do you use mascara? Have you ever cut your hair? Why do you eat what you eat? Have you ever taken any sort of medication, for anything from a cold to cancer? Ever visited a doctor, therapist, or other practicioner? Ever injured yourself, and applied an antibiotic and bandage, or a set and cast, to make your body do something it would otherwise not do on its own? Do you wear glasses or contact lenses? Do you wear shoes? Do you shave? Well then.)

Instead, we should tell each person: you are a full, whole, valuable person. Look into yourself. Curl up deep within yourself, forsaking the outside world. And look around. What do you like? What feels good? What does good? What is it about your physical self that makes your life a little bit better?

Maybe it is how your body looks. Maybe it is what your body does. Maybe it is how your body feels. Maybe it is not any of these things. Maybe it is something else.

Look at your body, look at it, every day, look at it and think to yourself, and seek out that which is good. Good. Not good for them. Good for you.

What do you delight in?

What will you?

Body image is a question not only for just-under-average-sized upper class white girls and women. Body issue is a question for all of us. Women and men alike. People of color, mixed races, different cultures with different values. The fully abled, the disabled, the deformed, the deficient. Every one of us, as human beings, has to deal with the reality of our bodies as they are and how that conflicts with the expectations the rest of our society has of us. This is expressed in different ways for different persons and different society. But not one of us, not one, is unaffected.

So I invited everyone, even those who know they are not NOW’s target demographic — I invite you all to participate tomorrow. Seek peace with your body. After all, you can never escape it. But your body is not your adversary. Your body is you.

Love yourself.

In the context of disability, what is the first thing you think of when you hear the words “assistive device”?

I’m going to guess it was a cane. Or a wheelchair.

If the first word to your mind was anything other than those two, and you aren’t already a disability activist, do let me know. I’ll give you a virtual cookie.

So, I thought I’d start this series. I don’t have a snappy name for it yet (not for lack of trying; “the crutch list” is about the best I could come up with) but I wanted to start putting these things out there.

It’s been on my mind recently. Lauredhel has been writing about accessibility and challenging my thoughts on the meaning of that word. Similar to the above quick-think test, I’ve got a virtual cookie for anyone who, hearing talk about making something “accessible,” doesn’t immediately think of wheelchair ramps.

Bear with me.

I have what is called an invisible disability; that is, the fact that I am disabled is not readily apparent. There is no reason for any given bystander to think that I am disabled (and isn’t it telling, really, that there has to be compelling evidence for a person to be considered anything other than fully-abled). Further, my particular disability (fibromyalgia) comes with a heaping case of self-doubt, thanks to the social context surrounding it. What that means is that I typically don’t think of “accessibility” as pertaining in any manner to me. Let me reiterate that, to make my point perfectly clear: I don’t feel like access for people with disabilities is applicable to a person with a disability.

I’ve been taught, in so many words, that accommodation for my particular condition is an unfair burden on the rest of the world, so I shouldn’t even bother asking. If it requires a change in the routines and behaviors of “normal” people, it’s untenable. If there is something I want to do, I had damn well better be able to get it done without any assistance, because it’s too much to ask of greater society to make any meaningful changes for my benefit.

In short, I am to sit on the sidelines and watch as life goes by. If the coach has the good spirit to give me a few minutes on the field, from that moment on, I owe my life to him. And after those few minutes have passed, for the rest of my life, I am to suffer in silence, never to ask for any favor again, lest my status as Grateful Crip be swiftly changed to Selfish Bitch.

I never really thought much of my diagnosis (age 12) for those first few years. OK, I had some difficulty in P.E. but I hardly even recognized that for what it was. My body the day before my formal diagnosis was qualitatively no different than my body the day after, and the same can be said of my self-image. For those first twelve years, I had been a “normal” child, which meant that the experiences I had as that child must also have been “normal” too. I’ve written in passing before about the fact that the pain I felt didn’t register as pain, because, again: I was a normal child, so what I felt must have been normal.

Anyway, following from that attitude: even after that diagnosis, the denial I lived in would not allow me to change what I did, or how I did it, as a result of my condition. In my mind, I was still “normal.” So any adaptation would threaten the image I had of myself — after all, “normal” children don’t hold their pen differently, and “normal” children don’t have to stop and rest when walking long distances, and “normal” children can stand for the entire duration of their shower. Therefore, I should be that way, too.

And I think the weight of my disability was more than I could handle at that age. That’s why I couldn’t let myself accept any change in my life as a result of it. If I did, I would have to confront my condition, face to face, and accept it and all of its ramifications. I think I knew instinctively that that burden was too great for me to knowingly carry, and in all the wisdom of a twelve year old, decided to pretend it didn’t exist while carrying it anyway.

And you know what, I hardly even knew that you could adapt your environment to better assist you in living your everyday life. It’s not as though there is a thriving public dialogue about life with a disability and how to get through it more easily. PWD largely live their day-to-day lives shielded from the public, except for the occasional appearance in Hallmark films and other inspirational kitsch. Society, in general, has little to no concept of what disability means to a person’s life.

So. I was thinking about my twelve-year-old self, and my eighteen-year-old self, and what it would have meant to me to know about so many of the techniques and devices I use now, and to really, deep down feel comfortable using these things, because there is nothing wrong with them, and you don’t have to be embarrassed, and you are not deficient, you are not a failure, you can hold on to your pride even as you use these things. It is not a statement of strength to deliberately refuse any aid. And neither is it a statement of weakness! Your use, or not, of such things is not a statement of spirit or character, period. It’s a method. That’s all. It’s a method. It’s a way of doing things. A way of living life. And God knows, if there is anything I learn in life, it will be that there are multitudinous ways of living a life, and no one of them is better than the other. They just are.

Does it say something about you that you put your left shoe on before your right? That you put your seat belt on before you close the car door? Or that you pull your pants up before you flush the toilet? Does it matter, really, whether you cut your pork chop into little pieces all at once before you start to eat or one by one as you’re eating?

It’s a method. It’s not an embarrassment.

With that said, I’m going to start writing about the products, ideas, and tricks I use to keep my roller coaster ride of life just a little bit smoother. If they help me, they’ll probably help someone else. And, in the meantime, maybe “normal” folks will understand a little bit better what it means to live with a disability. (This disability. My disability.)

Consider this, I guess, sort of like the family recipe box. I’m contributing some tried and true mixes. I figure, maybe other folks will add theirs. And maybe there’s a twelve year old out there who will be helped by it. And that would make me very happy.

(Ed. note: I wrote most of this late at night after a failed attempt at falling asleep, and once this is published I am going straight back to bed. I reserve the right to edit for clarity once I’m able to reread it in the morning. Thanks.)

This day to celebrate our country and all its inhabitants — to a good lot of those inhabitants, this day doesn’t feel like it’s theirs. This day is for someone else, not for me.

And the sentiment is pretty widespread when you think about it. It applies to all groups.

To a poor child: college is for someone else, not for me.

To a person living with an abusive partner or family member, who has never seen someone they know personally ever have anything better: respect for my dignity and autonomy is for someone else, not for me.

To the little girl in school: complicated mathetmatics and science are for someone else, not for me.

To the child of color, or child with a visible disability, who sees advertisements everywhere (for toothpaste, for breakfast cereal, for universities, for bank services) with skinny white people with perfect teeth and “good” hair: society in general is made for someone else, not for me.

When we structure our society this way, we may not be saying explicitly, this is Not For You. But those people get the message — loud and clear.

Can you identify what purpose clothing serves?

I can pick out a few, ranging from the positive to the potentially problematic:

• It keeps your body temperature well-regulated (whether warm or cold).
• It protects your skin from physical harm — scrapes/scratches, sunburn, contact with harmful substances…
• It prevents body discomfort. (Think bras, cups, braces/girdles for people with back problems, good supportive shoes, bottom wear that prevents ‘chub rub’ and so on.)
• It makes you feel good about your appearance.
• It sends a message to the people who see you wearing it.
• It identifies you as part of a group. (country music fans, Threadless frequenters, goth/nonconformist, high class professional, whatever.)
• It indicates level of formality. Clothes you wear to paint your house in, vs. clothes you wear to a job interview.
• It bestows a certain status. (GOB’s $3000 suit, COME ON!)
• It flatters and draws attention parts of your body you feel are attractive.
• It is aesthetically pleasing to you on its own. (The color or pattern, etc.)
• It is aesthetically pleasing to you when it is on you (not the “ideal” model). (The style, cut, shape, the color/pattern against your skin/hair/eyes, makeup, hairstyles, etc.)
• It gives you an outlet for your creativity. (You can combine different articles of clothing different ways, along with jewelry, headwear, eyewear, footwear…)
• It allows you to experiment in being a different person. (Trying on different styles, wearing costumes, etc.)

What would you add to this list?

When you are struggling with yourself, whether it’s your senior prom dress, or trying to wear a certain kind of clothing that isn’t comfortable for you, or whatever — try to think about this. What is my clothing SUPPOSED to do for me? It’s certainly not supposed to make me feel bad about myself, or to make me uncomfortable. With that in mind, why should I be wasting my time on this article of clothing, when I could be enjoying what I wear?

Leave your ideas on the subject in comments.

But I also feel smaller. Maybe the Lupron is helping reduce the bloat in the tummy? There is definitely a difference looking in the mirror. Less to squish. Which is rather a surprise considering the previous immutability of my weight.

It is very obvious my GP does not like that I am on the Lupron, not at all. “It’s not like taking an Advil,” he says. That’s not news to me, though. When I told Matthew same, he remarked: “Then what are you supposed to do? At least this is helping reduce the stuff that is causing your pain.” Which is approximately how I feel about it. I know it’s a serious treatment. (GP does think the dizziness and spasms are probably attributable to it, since nothing else came up on x-ray and bloodwork.) But it will be an improvement over the status quo. A lot of the anti-medicine-type folks fail to understand that concept. GP has been reasonable so far, so his views on this matter were somewhat of a surprise.

Halfway through the Lupron, at this point, so long as I don’t have to repeat the therapy at the end. After that first monthish, my symptoms were greatly reduced. Including the dizziness and spasming. They aren’t gone altogether, but they’ve been largely stifled.

He is sending me to physical therapy for the back pain. Welcome development, that. Especially as I am applying around for new jobs, and kind of hoping for a clerical job with the state. I’m in contact with the local vocational rehab services as well. I mean, I sit on my ass all day anyway, but if I am working full time I am going to need some help adjusting to sitting on my ass in a place without access to all the accommodations I have built for myself at home.

I am still adjusting to the idea of working full-time. I’m not totally sure I can do it, but on the other hand, I don’t really have much reason to doubt it either. Especially considering I was unable to sustain any sort of work-for-pay before my current medicine regimen. I am the same person, with the same medical conditions. All that has changed is my treatment.

I don’t think I’ve ever written here about the catch-22 I faced there. Without that treatment, I was disabled, unable to work at all. When I was on disability, I qualified for Medicare, which would pay for that treatment. But with that treatment, I was (tentatively) able to earn SGA. Which would disqualify me from those disability payments. Which would mean I’d lose my Medicare. Which would mean I no longer had the treatment that enabled me to work.

Fortunately they do actually continue at least Medicaid coverage for workers with disabilities, at least in Pennsylvania, but only temporarily. After that, you’re at the mercy of your employer.

The fight for universal health care is, then, quite intimate for me.

Over and out.

it’s funny, because i was about to say “this isn’t a post about body image.” but it is, isn’t it?

let’s cut to the point. i’m not talking about beauty standards.

i’m talking about my body. this physical thing.

i need to stop hating that physical thing.

it works differently. it doesn’t work like your body.

but that doesn’t make it bad.

this is hard to grasp. i don’t like this idea.

but maybe it’s better that i respect my body, and how it functions, than malign it, and Other it, and see myself as working against it.

maybe i need to see my body as that physical thing that is trying to help me be everything i want to be.

maybe i need to understand that i just have to interact differently with my body to accomplish that.

and that is not bad. that doesn’t make me Less Than. that doesn’t even make me different — or it shouldn’t, anyway.

maybe the problem is that i have been so indoctrinated into this culture that i can’t even see myself as just being – it’s always how different i am from the “normal” “healthy” body.

you know what, dammit, my body is “healthy.” my body is damn well fucking “normal” for me. when i understand how to work with it? i live a pretty damn nice life.

but the culture i live in doesn’t allow for that view. the culture i live in says that my body is not only different, but different in a bad way, because it doesn’t let me live my life like a normal person does.

fuck that.

i have a lot to work on, here.

revelation: i wouldn’t have such a hard fucking time learning how to work with my body if my culture hadn’t taught me to expect to be The Norm. if my culture hadn’t taught me that if you look like you’re fully-abled, then you must be. if my culture hadn’t taught me that if it doesn’t show up in the bloodwork or the ultrasound then it doesn’t exist. if my culture hadn’t taught me that my pain is simply pathology. if my culture hadn’t taught me about welfare queens and “milking the system.” if my culture hadn’t taught me that disability is both scary and pathetic.

in the meantime, i need to go take my weekly shower, so my gynecologist isn’t put off by my oh so gross body when i get my Lupron shot tomorrow.

…maybe i just need to understand that this is how my body works and damn it all, there shouldn’t be anything wrong with that — the fact that there is anything “wrong” is a sign of a fucked up culture — not of a fucked up body.

I’ll let the more experienced cover the article as a whole. But I just wanted to pick out this bit:

And as part of other anti-obesity measures, school officials should consider implementing programs to help girls build social skills, they added.

…….

*faint*

Ugh. There’s so much in this one little quote, I just can’t think of how to address it all.

There’s the fact that apparently a girl’s position on the social ladder only begins to matter to adults the moment she starts showing a little chub. No mention of the social ostracization, including the emotional harm—all the way up to and including depression and suicide—and the physical harm involved (ask my friend Mike what he faced as an unpopular child in school).

There’s the fact that, for goodness’ sake, these are children! My husband was a very chubby child, but he grew up to be 5′9, 120lbs, and plateaued at 140 when he was weightlifting. I was a chubby little girl, and grew up to be 5′8″ and 125lbs at the highest before I got on my current medication.

There’s the fact that you can’t just swoop in and “teach” a girl “social skills.” The hierarchy that exists in elementary, middle and even high school is far, far more complicated than adults give them credit for. Girls who are perfectly “skilled” socially are still ostracized. Even if a girl is a late bloomer in the social skills department, her position on the social ladder may be cemented enough that it doesn’t help her any. And popularity can be based on absolutely random shit sometimes that has not a thing to do with whether you have social skills.

There’s the fact that maybe the girl is perfectly happy with the friends she has, and doesn’t particularly want to be friends with the girls she perceives as “popular.” I knew I wasn’t high on the popularity list in high school (and I was beyond skinny, by the way), but I had no delusions that I would lead any better a life if I was. I had amazing friends and I wouldn’t have traded them for all the prep cred in the world.

And finally, to state the fucking obvious, there’s the fact that maybe, just maybe, these children are unpopular BECAUSE they are fat.

*head.* *desk.*

Update: Just wanted to add a slightly different perspective: Could it be that, besides popular girls being selected in part for their body type, they also feel such intense pressure to remain thin that they’ll do anything to keep that status? As usual, it’s a double-edged sword here.

Typical reactions: “But she was so HAWT before! Now she looks disgusting! Why did she do that?”

Now let’s take a slightly different perspective. Compare:

These are before and after shots from various retouching studios.

How many of the same men (and many women) who react with disgust at the “after” picture of Amy Winehouse will gawk or drool when presented with the “after” pictures of the second set—whether on (or in) a magazine, poster, billboard, advertisement or otherwise?

Bombarded with images like these, is it any wonder that so many women follow Amy’s path?

Via Shakes.

Consider, again, the phenomenon of invisible illness and the response of the general public to the knowledge that some acquaintance of theirs is disabled: a good many will accept it and offer their sympathies, and a good many will reject it (or at least be doubtful) and question the diagnosis. They know better, that person has to be faking it (or it’s all in their head), it can’t be true. They’re just lazy/freeloading/don’t want to work/welfare culture/etc. Even if these criticisms don’t make it off their tongues, they tumble around in their heads.

And those of us with invisible illnesses will, occasionally, have the good fortune of being able to observe these people voicing these thoughts to people they consider confidants. People who, they think, don’t suffer from and/or have close connection to someone with said illness. People who they think share their way of thinking. And usually, we’ll shut up and carry the knowledge with us that anybody who’s offering generic sympathies to our faces could be sneering at us behind our backs.

It has been my experience, being privy to some of these conversations (including my own brother’s admonitions to my fat and physically disabled mother), that the larger one’s waist size, the less likely people are to trust that they really do suffer whatever condition they claim to suffer.

Folks from the fat acceptance movement will surely be familiar with the underlying attitude. It’s a lack of self-control, or a reckless disregard for one’s health (rather, for societal expectations, but no one will outright say that) or an overarching irresponsibility. It’s a fundamental immorality that makes you fat, they say (though rarely in those words).

They see a connection here. If someone is too lazy to “just” spend an hour at the gym every day and deny themselves any and all pleasure in their diet, then—[insert forehead smack]—of course they’ll be too lazy to get off their ass and get a paying job! Or maybe it’s the other way around. Anyway. They take away from my viewing pleasure as I move through the world and then they take away my hard-earned tax money! Damn freeloaders!

Indeed, fat people probably experience a declining lack of trust in their own description of their experiences the less trim they are. And I’m sure this whole deal is compounded further for mental illness.

It just struck me as I was rereading Annaham’s post. It’s damaging and frustrating for fat folks and the disabled both, and difficult to combat at that—especially if you try to speak up, given that the original speaker just spent the first half of the conversation discrediting the opinion and experiences of you or anyone like you. It leaves one, in the end, feeling very small and helpless. Which is something both groups feel often enough already.