Simple Answers to Stupid Questions

Errr... except the question is not stupid and the answer is not simple.

On May 8 I received a visitor via a Google search for:

is chronic illness something they label you when they can't find out why you are in pain?

Well. Yes. And no.

No, because often they understand why you are in pain (for a rather simple, surface meaning of "why": that is, you have a diagnosis, even if they don't know shit about why your body does what it does): you have arthritis, or neuralgia, or back pain, or a really fucked up ankle, or whatever. And the best way to describe that, really, is chronic pain. (Chronic illness, etc.) Because it's pain that isn't going to just go away -- which needs distinction, because the latter is how pain is thought of culturally in the US. It's something you're going to be living with, if not for the rest of your life, then for a long while yet. And it requires a somewhat different approach.

But yes, in a sense, because doctors do love to punt. It is a rare doctor who does their job when it comes to the difficult patients, and patients who present with symptoms for which there seems to be no cause are hard to deal with, both because of the obvious, and because they are, honestly, just a general pain in the ass. They hurt and they need help, but you don't know why they hurt and so you can't really treat them effectively, and because the treatments are at least initially ineffective they keep coming back to try to fix it, and you don't have the faintest clue where you should go next.

This is not to say that doctors -- and other medical professionals, from the nurses to the receptionists to the therapists to the recordkeepers and the billers -- are therefore bad people. Most of them are doing the best job they can. Most of them have at least half a conscience. Most of them are trying to make as many lives as better as possible.

But good intentions do not erase bad results (as is so commonly thought). A lot of doctors are really behind in the research on most chronic pain conditions. A lot of doctors believe pretty backwards things about chronic pain patients (I'll give you two words that sum it all up: faking it). A lot of doctors are too busy managing other things to really connect the dots properly. A lot of doctors drop the ball in referring a patient to someone who can take care of them properly if they know that they cannot (and simply offering any ol' referral to get them out of your hair does not count). A lot of doctors fail to follow through, period.

And their patients suffer for it. Understandable or not.

The medical world is a busy, busy world. There's a lot going on at any one time and no one person can carry the entire burden. Sometimes, mistakes are made, because the people doing the work are human.

But sometimes, it doesn't matter why. Because someone is suffering as a result.

And someone had damn well better pick up that ball and set it rolling again, history be damned.

To patients who don't know what to do, where to go, who to see, because nothing seems to go right: Keep trying. Keep faith. It's not all in your head. You aren't imagining it. If one professional fails to diagnose or treat your condition to a point where you get better, then find another. Because that professional is not doing hir job.

And you deserve one who does.

It's exhausting sometimes. But keep moving forward.

"Dogs get better care in the dog pound"

Too exhausted to comment, or even to finish the remaining 2/3 of the article. It is devastating.

I will just repeat: Immigration is a human rights issue.

Are Immigration Authorities Going After School Children?

I wouldn't be fucking surprised.

God damn them. I grew up with these children. My late elementary school years were spent in a school way out in county land, attended mostly by the children of the immigrants at Linell Camp, who worked the fields day to night -- I was one of two white students in my grade. What the fuck did they do wrong? They came to school and they worked their hardest and I can say, having graduated with several of them, that they damn well made something of themselves by your standards. Their parents worked much harder than most of us ever will, and they lived in homes the size of my closet on a fenced-in campground, surviving on anemic wages. And they lived in fucking fear because of actions like this.

Immigration is not an economic issue. It is a human rights issue.

I remember the posters.

I grew up in central California, a heavily agricultural area, an area heavily populated by Latin@s. It has been a bit of a shock for me, as I moved on to other areas, that cities and towns would run into one another with nothing in between: in the central San Joaquin Valley, there was county land, with dense residential areas called towns, and it was usually a 10-15 minute drive through county land -- corn fields, grape fields, all varied sorts of orchards -- to reach the next town.

I did always wonder: where was your address, if your home was in that county land? And if something happened to you while you were there, who would come to your aid?

I remember the posters. I would see them posted on bulletin boards in grocery stores, fast food restaurants, secondary schools, county buildings. They were low quality copies, asking for my help, asking: have I seen this girl?

Almost always a girl. And there were other common features -- the eyes, the thick dark hair -- the shaded skin. And the name. Veronica. Consuelo. Yolanda. Maricela.

Nobody ever seemed to pay attention to these posters.

And I remember the signs on the highway, when we would drive down to Los Angeles to visit my doctor, or when Mom was being shunted around various hospitals for reasons I was too young to remember. They were the electronic types, set up over the road, the sort that would warn you of gusty winds on the Grapevine. They flashed messages of missing children. And I seem to remember different names in those messages.

And I remember the rationalizations. These low-class girls, in low-class families. Must be runaways. Won't be missed. What's another one? Turn your eyes, and in another few seconds all will be forgotten.

This is a systemic problem, with dirty roots reaching deep. From the casual observer to the detective whose job it is to do these searches, nobody seems to care. Nobody who matters, anyway.

Good God

I am far, far behind in my reading, but Matt was reading the news aggregator after we got home from dinner tonight, and my eyes caught a glimpse of the words "immigration raid" -- oh no -- in Iowa.

The AP has a brief sum. Cold comfort, that last line.

It does give me hope, at least, that some people saw it coming, and arranged a workshop for immigrants on their constitutional rights -- regardless of legal status. Not that it will change the system that is incarcerating them, the system that separates family members, that treats people like useless old dogs. But it will make people aware of the rights they are said to have, and maybe, maybe it will help save some.

Immigration may not be the issue that some exploitative politicians hoped it would be for whites in this country -- but make no mistake: Awful, evil things are happening in your name. Not only in Guantanamo Bay, not only at Abu Ghraib. They are happening every day in Iraq and Afghanistan, and we pay some smidge of attention to them, at least, but we are blind to what happens every day in these same states, in this same country, not leagues away and across a vast ocean where we can imagine a human separation: these things are happening on these grounds, in your town, next door to your home. And we look away.

Blogging against disablism

Jill(?) writes:

Accessibility is not and should not be just about ramps and elevators (though these things are certainly a lifesaver for me personally), but it should also be about addressing mental needs, emotional needs, spiritual needs.

I.

Our society, right now, is structured around the needs and expectations of a young (but not too young), white, cisgender, male, heteronormative, fully abled person. When issues of accessibility present themselves, the defense is: "We couldn't have expected a sick person would try to" use this service, be in this place, pursue an education, seek elected office, petition its government for fair treatment.

Put another way, the majority people are abled in pretty much every way, and even the disabled as a whole are not disabled in the exact way that each individual disabled person is -- so of course individual institutions, from the largest to the smallest and most localized, could not have prepared for [insert whichever specific disability the person trying to access has].

The same concept comes into play when a city has installed a wheelchair ramp some place, somewhere, and a person with a disability is petitioning for access in some other way. Well, we already do this much for you -- what more could you people possibly want?!

What an unfortunate and narrow view of the world! How small a world these people experience. We are closing off contact from a great many people who have so much to add. As we restrict access to institutions and continually narrow our performed roles, we lose more and more richness and depth in our individual lives.

Things could be different. We could recognize that a person can have something to contribute even as sie benefits from support and assistance that most do not require. We could recognize that it would be in our own benefit! to provide that support and assistance, and that even beside that, these people deserve to be included by merit of their personhood.

Right now, though, for a good many people, the fundamental personhood of the disabled is a hard pill to swallow. Maybe someday.

II.

There is an all-too-common attitude across the population. Simplified, it says: Don't make me feel uncomfortable, thinking about your differences.

Ew, you bleed from a hole between your legs? And it happens every month? That's gross! Don't make me feel uncomfortable!

You say your voice as a person of color is systemically silenced in favored of white persons? That's ridiculous! That would mean that the due given to my voice is unmerited and that I should change how I speak to make way for people of color -- that's too much for me to deal with! Don't make me feel uncomfortable.

Prosperity is solely a matter of motivation and effort. You say that I was privileged by my birth into a stable middle/upper class family? But I've worked so hard, and that would mean that what gains I've realized weren't the result of my hard work. Don't make me feel uncomfortable!

And so forth.

As I've insisted in the past, it even manifests in more progressive persons. Consider the argument that periodically crops up when a person is told that no matter what they do, they still bear some culpability: but that means that I can't make it go away by saying the right words or joining the right groups or buying the right things! Don't make me feel uncomfortable!

Well, bully for you, because guess what? We live that "discomfort" every single day.

It takes various different forms for various classifications in various sets of people. Some seem far more innocuous; some bear that evident stench of bigotry. Neither is any less problematic. Both dismiss the experiences of members of the historically oppressed group, simply because they aren't pleasant to think about.

Which is why women are reminded to smile by men who regard them as decorative elements and don't want to be bothered by the thought of their personhood. Which is why sick people are urged to "lighten up" and to "learn to see the silver lining" and to "think positive" by people who think of sickness primarily as either the death of the person inside the body. Which is why people of color are told to stop being so angry by people who actually think it is possible to be "colorblind." And so forth.

Wouldn't want to make someone uncomfortable, after all.

Ashley Dupre v. Joe Francis

It didn't take long for the cries of, why is she suing NOW?

Of What a selfish spoiled brat, only after the money! Of She just wants to ruin his career! Of She just needs the attention!

No, these things weren't said where I'm going to link, but the implications are there in the question (no matter the asker), and it's not hard to find actual people saying these things outright.

Thomas gives this idiocy the smackdown:

Why is she suing now? Maybe because someone is suddenly using the footage that she thought was long forgotten? Maybe because she feels cheated that Joe Francis gets to make a killing off of something she did when she was just 17, and that she got nothing for except a tee shirt and a few drinks? Maybe because, now, publicly identified as a sex worker and afraid she’ll never be famous for anything but being sexual for money, she thinks the best move is to try to get as much money out of it as she can? Maybe she doesn’t care if the whole world sees her naked at 17, but she thinks Joe Francis is a tool.

I don’t know the woman, but I can see a lot of reasons.

I think it's rather indicative that no matter what sick shit a man pulls, we have to seek out some woman, somewhere, to blame for it.

Let's put a death to this, shall we?

Trying to turn around a situation so that it is about race instead of sex. (Or what have you.)

"If somebody said such-and-such about a black person..."

Cut it the fuck out. You are playing on the narrative that racism is dead in our society, which is a back-breaking load of rancid shit.

I understand the desire to try to communicate to people who might not otherwise understand how serious something is. But please find a way to do it without making things worse for our brothers and sisters living every fucking day as a gay person, trans person, person of color, person with a disability...

These systems of oppression are incomprehensibly large and they operate in different ways for different classes of persons. They are equally reprehensible, but that does not mean they all operate the same way, and that if something problematic about [x class] is not tolerated in society, [x class] must not have it so bad after all.

Check your privilege.

Conversation

This has been on my mind lately, as I slowly page through the vast material on disability rights, activism, social model...

Are there privileges within disability?

I speak as someone with "invisible" disabilities. I know that because of this, I am afforded more access to society than persons with visible disabilities, in multiple ways. Doors, walkways, and seats are designed for my body (at least in purely spacial terms; many seats are untenable for my sore bones). Counters are built at a height that approximates convenience for me. And in purely social terms, people do not look at me and think "disabled." (Neither do they look at me and think "abled" -- as an abled body is the default body, it requires no thought at all.) Thus I am treated as though I were a full person. Any condescension directed my way tends to be because I am young and female. And, at least in my experience, I am still more of a person in most eyes as a woman than I would be if I were instantly identifiable as handicapped.

I am tenderly aware of this condition. And I wonder whether other pwd, those challenged in different ways, see this condition as one of privilege. And I worry, when I talk about disability, about appropriation. About using words that pwd have used for themselves for ages, even though ostensibly they do not apply to me. About taking up a banner that has been carried throughout the years by people who do not have the advantage of being able to blend in, to pass.

And I figured I would put this out, as a request for the thoughts of those who approach the world from an atypical place.

I do want to clarify that I still do suffer barriers to participating fully in society. There is a reason I quit study, twice, even though I miss college dearly -- no matter how I have attempted to adapt, I cannot read physical, printed-on-paper text at length; it inevitably triggers my disabling migraines, which I go to great lengths to prevent. There is a significant degree of cognitive impairment from the fibromyalgia to begin with, and when you add the medications I require to function day-to-day, my ability to concentrate and process thought is considerably decreased. I can never stop being aware of my physical capacity; if I go out on a walk, I have to keep in mind how much energy I have in reserve -- after all, I have to be able to make it back home. If I value my health, I can never stop thinking about it.

This is to explain the place I am coming from. I do detect a defensive tone on re-read, and I apologize for it. Know that it is not directed at pwd or progressive allies; it is a reflex built up by years of fighting a system that assumes that because I look "healthy," any complaints (of personal pain or of societal barriers) must be overblown.

What are your thoughts? Where are you coming from? What barriers do you face? What privileges do you see? What do you think we can do to address these?

(I am very nervous about putting this one out there -- please do offer criticism if you have any, but please be gentle. Keep in mind I am relatively new to all this.)

this is new to me. this idea that i should love my body. not hate it.

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.

Submitted without comment

President George W. Bush, in response to a question of how to protect Christians in Iraq:

Well, one thing we can do is to keep our troops there long enough to have a civil society emerge, and go after them, and go after these killers, and bring them to justice so they quit killing people, including our own troops, because this is a war.

spoons

from 96dpi

This little spoon may be all I have. But damn if I'm not going to keep rocking that spoon for the rest of my days.

I *heart* Elizabeth Edwards

Elizabeth Edwards is, by far, my favorite public figure. I see a lot of myself in her, and I see a lot of what I wish I could be in her. There's been no shortage of times I've wished that she would get involved in politics, not only her husband John.

All of which is to introduce this video of her throwing hardball at John McCain's so-called health care plan, pointing out that even John McCain would be refused health care under the plan he proposes:



The phrase "pet peeve" is not strong enough to describe my feelings toward the universal policy of preexisting condition exclusions. I consider them cruel and immoral. If only one thing could be changed about our health care system in America, I'd criminalize this sort of policy. Consider it like loaning money only to people who don't need it: so no mortgages, no car financing, no student loans. Nothing. The only way to qualify for a loan is if you can prove that you have no reason to need the money at all. Doesn't that sound, well, fucked up? That's because it damn well is.

Not surprised that the host of the show tried as hard as she could to get some sort of salacity out of Edwards. "Did you have a fight?" Good God, these people belong back on the schoolyard, if only for the safety of the rest of society. Elizabeth, as always, stays out of it, ever classy.

Sixteen Maneuvers to Avoid Dealing with Racism

Holly at Feministe is fighting the good fight against a rather strong current of opposition.

The Bootstrap Myth
“Racism is a thing of the past… this is a free country, and anyone who works hard can make it in America.”

The Backtrack
“Hey, wait a second, that’s not what I meant… I mean… you took my words out of context, don’t make it try to sound like I’m racist!”

The Remove the Right To Be Angry
“You’re too sensitive… if you weren’t so aggressive, vocal, hostile, angry, or upset, people would listen to you and you wouldn’t get in trouble!”

The Utopian Eye-Gouger
“I’m colorblind, personally… why can’t we all just ignore race, it’s not like it’s even real… it’s not like I tangibly benefit from being white every day or anything! Can’t we all just get along?”

Turning the Tables
“You’re being just as racist against white people, you realize. You’re being racist against me right now, you reverse-racist hypocrites!”

The Good White Person (not like those obvious racists!)
“Whoa, that guy over there is SUCH a racist, unlike me… I know exactly the right things to say and I’m never racist. By which I mean overtly offensive about it. Hold on, I think I’m going to go spit on that guy. I hate him.”

The Unblemished Family History
“Hey, my family never owned slaves, so it’s not like I, as an individual, get any benefit from racism!”

The Bending Over Backwards (makes you look flexible, but accomplishes little else)
“You people of color are so right. I agree with everything you say. Because you’re right, of course… not just because I’m guilty and white and wrong!”

The Personal Justification
“But a black person, Mexican, mean old Asian lady, or Native American once cut in front of me in line, said something stupid, mugged me, or took my hubcaps! So as far as I’m concerned, they proved all of my prejudices!”

The Loophole of Escape
“I can’t possibly be a bigot or a racist… I’m part of the oppressed due to the fact that I’m a woman!” (or gay, poor, young, trans, etc.)

The Culture Appropriator
“Damn, bro! You know I’m down with the homies, I ain’t no wack racist cracker, shiznit.”

The Lean On You When I’m Not Strong
“Teach me, help me. I’m just a white person, so I need your wisdom as a person of color to show me how not to be racist. Wait, is what I said earlier racist? How about this shirt I’m wearing? Can you come with me to this party, so they know I’m not a racist?”

The Pause for Applause
“Unlike all those other white people out there, I’m an anti-racist.” (…) “I do anti-racist work and I try to educate other people about anti-racism.” (…) “Wait, did you hear me?”

The Smoke and Mirrors
“I totally agree. Racism is one system of oppression among many interlocking ones, that specifically awards more privilege and power to all white people, whether they like it or not, and serves to keep the existing power structure in place. Oh… what? You want me to volunteer in a community organization, contribute money, do security for your protest march? Uh… yeah maybe next time, I’ve got to wash my hair tonight. And walk my dog, see the latest episode of Lost, manage my stock portfolio…”

The Penitent Paralysis (will not truly absolve you)
“Oh my god… that is so awful. I’m so sorry. Sorry. I can’t imagine what it must be like… I’m sorry. That’s so awful. I feel so bad for you. Sorry.”

Whipping Out Your Best Friends
“Hey, I’m not a racist, OK? Some of my best friends are black. See?”
Best Friend: “Yeah, I’ve known him since we were kids, and he’s never said anything racist to me!”

…and one bonus one for all your folks of color out there.

It Doesn’t Matter What Comes Out of My Mouth, Just Look at My Skin
“What? I can’t possibly be racist. I AM a person of color. How can I be racist against myself, huh? No, I haven’t heard of internalized racism, and I still think affirmative action is reverse racism!”

The people in comments are doing a hell of a lot of maneuvering, too.

People seem to be taking this rather personally, because it doesn't offer an out for the "good" people. The non-racists. It implicates everyone, even those with a heightened awareness of racism.

Thing is, those non-racists? There is no such creature.

Holly continually points out that looking at the situation this way is dangerous. When we frame racism as the actions of individuals, as a character judgment, this is where we end up: we can't own up to an attitude or behavior as being racist because, you know, it's not dressing up in white gowns and forming a lynch mob. It allows us to separate out us good people from those nasty racists, who are way over there, nowhere near us, nuh uh. It allows us to absolve ourselves of any responsibility for our participation in the institution of racism.

We need to make this clear: Racism is not a character trait. Racism is a SYSTEM.

Racism is the tea in which we are all steeped as children. No person can escape it. Racism is clutching your purse when a black person walks by; racism is managing your investments in Quicken. Racism is mocking a person as stupid by affecting an "ebonics" voice; racism is sticking to the safe neighborhoods when you take your children out trick-or-treating. Racism is hiring a Mexican maid or landscaper under the table for low wages; racism is staying at a hotel that employs same. Even if you didn't know it and didn't intend it.

Makes you feel squirmy and defensive, doesn't it?

You cannot escape this system. And the fact that you think you can bespeaks your white privilege in itself: no black person can escape the system where the taxi passes them on the street. No Latin@ can escape the system where they are assumed to be dumb and illiterate until proven otherwise. No person of color can escape the system where their resumes are passed up because of the explicitly ethnic name at the top -- where research proves that employers would rather hire a convicted felon with white skin than a person of color with a clean slate and the exact same resume.

The fact that you think you get to escape that system, just by saying the right things, is, frankly, an insult to the people who struggle against that system every day.

Don't take this as saying "therefore, you are a Bad Person." Because this isn't about who is Good and who is Bad. We all breathe the same air; you aren't bad because you take in some random gases along with the oxygen when you inhale.

But there is hope. Because when you stop viewing racism as an individual character trait, and as an all-encompassing system that none of us can escape, then you start to see how things can change -- really change.

You start to see that even though you do contribute to that racist system, you can reduce your contribution as much as possible.

You can start examining that privilege you've got.
You can monitor your language for slurs and dogwhistles.
You can attempt to change the latent attitudes you didn't even know you had.

And you can start taking action. Knowing that this isn't because you're some saintly Good Person, but because it's just the proper thing to do.

I myself use plenty of those Sixteen Maneuvers. We all do, really. It doesn't mean one of us is worse than the other. It just means we all grew up in the same world. And maybe, then, we can stop turning it into a holier-than-thou competition, and start working together to make things better.

Boot straps

I cannot insist strongly enough that you read this post from Resist Racism: Playing at Poverty

via tigtog

Melissa said it best: the best possible world for a straight, white, able-bodied, wealthy male is not the best possible world for everyone. Such traditionally privileged specimens might like to imagine they exist on a level playing field, but a broader look reveals that their lane is the only one constructed in such a manner.

The next person to invoke the fabled boot straps are going to feel the sting of my boot straps on their ass.

Yes, yes, yes, yes, yes

All I can do is share this, because it made me smile.

When my daughter was born premature and I looked at her with a feeding tube and nasal canula in a plexiglass box, I trained myself not to say she was little or pretty. I trained myself to say she was my big strong girl, because I thought that for her to make it in the world, she would need me to see her that way.

It was in the context of raising feminist daughters, but it works just as beautifully in the context of eliminating ableist privilege.

Thank you, Thomas.

(Small bit of irony: Firefox's spell check does not recognize "ableist" and instead recommends "ablest.")

Hey, that feels pretty damn familiar.

What is it? Oh, it's just the foot of Schwarzenegger & co. on our backs.

Dammit, this will never cease to make me angry. For the most part, the disabled already live in poverty, and they have no way of changing that. You usually can't magically become un-disabled. And disability is, by definition, the inability to just "work harder" to make ends meet. It's the inability to work enough to live.

And here we go cutting their benefits left and right (including, apparently, again, COLA for the blind and disabled). With an inflation rate of 4.3%. So that we can ease the burden on those poor yacht consumers.

Deep breaths.

Mind, body, self

Hot water rolled down my spine, dripped off my face. I was bent over my plastic chair, fingers gripping the handles, back parallel to the ground, losing consciousness in the steam of the shower.

***

I often find myself stuck in uncomfortable positions. I face a conundrum: it would cause more pain to move than it would to stay—and I wouldn't be guaranteed a comfortable position were I to move anyhow. So I remain.

And the specific circumstance is awfully reminiscent of my earlier years. Back in high school, when I relied solely on the occasional acetaminophen to soothe my pain, I would find myself lost in the shower. The water heater was as old as the house—sixty-some years—and probably was showing the same cracks the walls did. But I would turn the hot water all the way up, and gradually, as my aching body grew acclimated to the increasing heat, the cold water all the way down. I would lean against the side of the shower, unable to stand upright, the ambient heat pulsing through my tense muscles, momentarily letting go of the fear of the very visible mold under the caulking, or the fist-sized spiders that occasionally showed their faces on the ceiling.

And I would lose myself. Unable to move.

Eventually my knees would protest in pain, or I would find my back too weak to stay where I was—and I would sit down on the bath tub bottom, undoubtedly cleaned no less than two months previous—or just shut off the shower, so fucking what I only had the energy to wash my hair, everyone will just have to deal with my merely rinsed-off body for the next week, until I find the strength to step back in.

It hasn't been that bad since I began actively treating my condition. Shower frequency is, pitifully, a rather accurate measure of health in my case; I find myself able to soap up two or three times a week now, rather than my previous two or three times a month. And while I normally feel some weakness and trembling after my shower, I am normally able to get through my scrubbing routine unimpeded.

***

I have a relatively complicated relationship with my body. I suspect the same of many pwd.

I inevitably find myself attributing agency to my body wholly separate from the mind: the squishy, palpable lump of physical stuff versus the spiritual, incorporeal being. Whatever it is that "I" am, as a person, exists in the latter, and resides in the former. I am my mind, stuck in my body.

This is not so much a rational theory, but it is a rational reaction. When you struggle, day by day, to complete routine, rudimentary tasks, and the solitary obstacle is your own physical body—you may find yourself facing that same mind/body split.

You cannot turn over in bed at night; you hurt too much to so much as shift your arm, which is in searing pain in its current position. You are due for your medication, but it lies beyond arm's length, and you are so sapped of strength you cannot muster the power to force your tired bones into such a position as to reach the bottle. You find yourself trembling and unable to stand, and therefore unable to put together a small and simple meal to feed yourself. Depending on your condition, you may find it even more difficult to muster the appetite.

It hits at the heart of the concept of privilege, doesn't it? Most don't even have medication to take, much less having to break down all the little steps involved in taking it, and think over each one, and how to overcome one's limitations to achieve it. That even ignores other forms of treatment, from acupuncture to physical therapy. As glurgy as spoon theory is, Christine nails the dilemma when she says:

... everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. [emphasis mine]

It's hard not to feel that you are constantly fighting your body when every breath, every step is a struggle.

And so I've thought for years now: ever since I came to the slow realization that I was not normal, that none of the other children felt the routine pain I felt, day by day, that there was a reason I was having trouble keeping up with my peers in phys ed. That moment, when that elusive concept first became obvious to me—though I continued to struggle with my former delusion, day by day—that was the day I learned to hate my body. That was the day I came to know my body as the enemy.

After all, I still existed in there, somewhere—all the same thoughts, hopes, feelings, fears, and dreams of that blossoming young child that had been there yesterday—but I suddenly became aware that my body was not working with me in those things. And it never had been.

And so it became my adversary.

When I first began receiving failing grades on my high school progress reports, shattering my former 4.0 record: my body was my adversary.

When fell so behind in school after a particularly awful flare-up that I was still making up tests on the day before my graduation ceremony: my body was my adversary.

When I had to drop out of college only six weeks after I'd begun, because I had so overworked myself that I was bedridden for weeks, and housebound for months afterward: my body was my adversary.

When I had to drop out of college two years later, having successfully completed fifteen of the forty-five units I'd attempted, not in so bad a physical state but knowing I soon would be if I continued: my body was my adversary.

It has been a consistent theme throughout my short life. No matter what I seek to do—even when it's something that will make my physical self better on the whole—I must consider how my body will prevent me from doing that, and, if possible, how to overcome it.

***

My eyes found a vague reflection in a splash of water on the floor. I was breathing heavily. Stuck. I stared at the wavering reflection, cream and grey on white, and searched out the shadow of my eyes, while a similarly blurry thought formed in my mind.

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.

For now, maybe I can make peace with my body. Maybe I can come to understand that my body is not working against me, but that I—the singular person, from cerebellum to nerve ending—am simply working against a set of expectations that are stacked against me from the beginning.

Life isn't fair

As though you weren't given the toy you hoped for in your Happy Meal.

As though you caught all the red lights home.

As though you got a few bad letters after your turn at Scrabble.

Isn't that exactly it, too? You were dealt a bad hand, after all. It's just a game.

It's easy for it to be just a game when you never so much as feel the fallout from your own bad decisions -- after all, you've already been sheltered from feeling the effect of any act God could throw at you.

Sometimes, life isn't fair -- for the rest of us.