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.

Rambling on disability and identity

I still don't fully identify with the word "disabled."

It's not the word itself. Certainly I am part of a class of people who have to approach life much differently than the rest of the world. People who don't fit into conventional means of living. Whichever label this group chooses, if any, will still describe the same thing.

... I guess it is the word, then. Because when I think of it that way, my membership in that class is quite clear. But when I think of it as "disabled," the doubt returns.

That is, I think, a result of the cultural attitudes toward disability. Disability strips a person of their personhood. They become less than. Pathetic and pitiful are the perfect words for this attitude. You feel sorry for the not-a-person in a human shell (another trope from this attitude) because they cannot participate in the activities that the culture deems necessary to personhood. You feel sorry for the not-a-person because you can't understand them very well, and that must mean that they have significantly diminished intellectual capabilities.

And most of all, you feel sorry for the not-a-person because they are so inescapably dependent. Especially in the American culture of individualism, people are reluctant to admit that they are dependent on anybody or anything to achieve their "success." Of course, we are all interdependent, whether we care to admit so or not. No middle- or upper-class person would enjoy the quality of life they do now if it were not for the unpaid work of the women in the families, and the uselessly low-wage work of the people -- mostly of color -- who put together their clothing, who tend and harvest and transport the fresh foods they eat, who keep clean the public places they frequent -- and so on. But the insular middle- or upper-class person will deny this, claiming to be a self-made (wo)man. At heart, they deeply fear the implications of acknowledging their own dependence. Their entire sense of self would deflate -- because that sense of self is built upon the person's imagined independence.

I traipsed through my early life blissfully, and willfully, deluded. The word "fibromyalgia" meant nothing to me. I was normal, I thought. Over time, though, I began to see ways in which the condition was affecting my everyday life. How flushed and lethargic I was after gym class, how my muscles twitched and trembled, how my teachers or friends in the next class would express concern about me when I stumbled in the door, slung my backpack beneath the desk and fell into the seat, resting my head in my arms on the desktop. Every day. I would notice that walking a longer distance across campus took a greater toll on me -- and began to purposefully schedule my classes close together. I would remember moments in my past, like how I never seemed to win the races we would run back in kindergarten, tho' I was pushing myself hard -- and how my teachers back then would comment on reports that I was bright and eager, but my coordination was lacking (to this day, I hold my pencil in such a way that strangers will stop and comment on how strange and different it is).

But I was still convinced that I was still normal -- just different. The fibro was something I carried with me -- it didn't crush me.

I recount all of this to provide context. Until my junior year of high school, my condition had no effect on my ability to live my life, I thought. It occupied a different space in my mind. I compartmentalized it away. It didn't exist in the same space as my everyday life. Even as I was quite clearly accommodating it -- modifying my schedule, carrying my tylenol bottle with me (fuck that ridiculous school policy), sitting down the entire lunch period even if my friends were all standing together a bit away from the bench we claimed as ours -- these things were invisible to me.

Of course, that all came crashing down in the following years. A serious pain flare-up in my last semester almost cost me graduation, and I went on to drop out of college -- twice -- because I couldn't handle the workload.

And after that first time, I learned. I went down to the Social Security office to begin my application for disability benefits. When I was planning my return to college, I availed myself of the Disabled Student Services office as early as possible. I forced myself, with great difficulty, to accept that I did need accommodation, and to talk with my professors beforehand to work out a plan. (For the most part, it boiled down to lenience on absences, which were sure to be many, and extended deadlines on projects if I needed them. I was fortunate to have professors this round who worked with me on that matter -- though I still ended up dropping half of my classes mid-semester.)

I was struggling to accept myself, to truly understand who I was. All along I had been under the impression that I was no different from anybody else. I had pain, yes, but it didn't make any difference in how I lived my life. Or whether. I kicked and screamed and cried out, because it wasn't fair. All these things I wanted to do! I had to accept that I couldn't do them. I couldn't take fifteen units and make it through the semester with passing grades. I tried modifying my schedule and adjusting my approach and twisting around whichever way I could to make it work, but eventually I was down to two classes and I couldn't even handle those and also handle my meals, laundry, showers... what did this mean? I didn't want to think about what it meant. It depressed the hell out of me. Everything I thought I was, I wasn't. Everything I'd ever dreamed of doing was being taken away from me.

What was I?

"Disabled." I used the word reluctantly. Following Social Security's definition, I certainly was disabled. Due to my condition, I was unable to work enough to earn substantial gainful activity. It was hard to deny that.

But the word didn't really make sense to me. It didn't fit. It didn't feel comfortable. Honestly, I felt dishonest using it.

There are at least two parts to that. First, I was, and am still, painfully aware of the fact that quite a lot of people are of the opinion that fibromyalgia is a condition of fakers, hypochondriacs, complainers, hysterical old women who make a life-threatening crisis out of every toothache and stubbed toe. The phrase "fibromyalgia is bullshit" is, I think, the first or second most common search that leads to this blog. A lot of this is still internalized. I know it for the bullshit it is now, but in years before, I was deeply afraid it might be true. I was raised to always know that everyone else knows better than I do, that my opinions were meaningless, that I was just a naive little young thing with no worldly experience so how could I know anything? So, I was always questioning myself.

Second, it felt appropriative. After all, I looked healthy. I had two working legs to carry my weight, two working arms to perform whichever task, and a working brain to process information. I wasn't obviously disabled, and so I must not actually be disabled.

Combining those two, I questioned myself: if I can sit here at my computer all day, reading and writing, why can't I sit at a desk in some office somewhere and stuff envelopes or push paper? (I know the answer: simply being "presentable" is a serious effort that drains me of strength, and being outside the home means little to no resources available for me to recover that strength, from having a comfortable chair to being able to slouch or lie in the chair or pull my legs up or stretch them out however I may need, to being able to take to the bedroom and rest whenever I feel I need to. And doing something that is required of me means stress, which especially affects my tense shoulders and neck, making migraines all the more probable.)

I must not be disabled, then. I'm just... well, I don't know.

I actively identify as disabled now. I know there's no better term to fit. I am working part time, but I am not guaranteed to be able to work part time continuing forward: much like how the poor are always teetering on the edge, and any one small thing that goes wrong means worrying about whether your heat will be shut off or whether you'll be outright evicted -- managing my pain is a difficult job, with plenty of opportunity to make mistakes, and if I don't build myself a healthy buffer, having one thing go wrong could mean descending into another serious flare that leaves me unable to work at all.

And I'm beginning to realize that "disabled" does not have to be tied to one's ability to work for pay. It can affect any of various areas in our lives, from personal care to our social lives to our recreation/leisure time. And to be honest, the focus on work-for-pay as a top defining aspect of self is an ableist construct itself.

But when I am out in the world, I am aware of what "disabled" means to anyone who is listening. And I have not quite kicked what of that I've internalized. When I call myself disabled, I see clearly what the people around me see: a healthy young woman, slim, standing upright with decent posture, dressed prettily, with her hair done, with no visible deformities, who speaks clearly and normatively, who uses no visible mobility aids, and who is not accompanied by any sort of personal assistant. No person would look at me and think "disabled" without being told so. And even those who are told so may doubt.

Not many express that doubt bluntly to my face. But I know what I've heard from people who don't know that I have a disability and who think I'm their ally by virtue of being ostensibly abled -- people who remark on others, disparaging them, making "fun," mocking them, not just for what they are, but most of all for daring to demand recognition. For daring to expect respect.

I know what you say about me behind my back. I've heard it from you about other people.

It is a privilege, I know, to be able to go about the world and not be immediately identified as disabled unless I choose to make it known. But it is frustrating to me, knowing that when I identify myself as such, I am more likely to get someone who will sneer privately at me than someone who will be sympathetic and understanding.

I have not yet begun, fwiw, to deconstruct the meaning and history of the word itself. I know there are many who have, and who have their own preferences. For now, I don't stick to any one word or phrase, but I will respect those who wish to be referred to one way or another.

I am still working to resolve my own identity. I do identify strongly with this movement in favor of people with disabilities -- for their rights, for their acceptance, for their betterment. I don't know if "disabled" is the right word for it. But I know that this is something I care deeply for, no matter what it's called.

Consider

And it doesn’t matter how much you may *think* you support women of color; you can’t self-proclaim yourself an ally. That’s for the oppressed group to decide. Ico

This rings true, circumstances (and particular social class) regardless.

Word

Nobody’s ever defended themselves against assault charges by claiming “it doesn’t hurt when I punch me,” and you’d presumably think it pretty ridiculous if they had.

Hah

I gotta say, I respect my new geographical neighbors. The national media was working itself up into a lather about Obama's remarks about working-class Pennsylvanians, and then it turned out that, here in actual non-Philly PA (those same voters about whom Obama was talking), nobody gives a shit. I hope all of these pundits who pride themselves on being "in touch" with the average Joe down here on the ground (who is lucky to count unpaid vacation days among his benefits, much less owning his own vacation home) feel the sweet, sweet sting of pwnage.

And just now, my husband emails me this:

Politics stops at the water's edge -- even if that water's frozen, apparently.

About 57,000 more households in the Pittsburgh region tuned in to watch the Penguins beat up on the Ottawa Senators than tuned in to see two senators (Obama and Clinton) beat up on each other in the Democratic presidential debate, according to Nielsen Media Research.

The hockey game played in 175,000 -- or 23 percent -- of all households in the Pittsburgh metro market, while the blame game played in 118,000 households -- or 14 percent of the market, according to Nielsen.

Pittsburghers know better than to think that debates moderated by TV "journalists" are worth anybody's time. They neither inform nor edify; they aren't entertaining; they have nothing to do with our actual lives. We'd rather you broadcast ol' Sax Guy playing the Addams Family tune on a two-hour looop than watch a couple of blowhards play the same old tired gotcha game with two politicians who'd be better served catching a few hours of much-needed sleep.

We're too smart for you, o MSM. Neener neener.

Snapshots

Husband and I are going over the finances. It's a bit of a tight time (I say this, mind, knowing that we are trying our damnedest to land round two Penguins playoff tix, and have already bought Pirates-Yankees tickets, and things like how I have been on the lookout for a cute new headband/scarf lately -- so we are not poor, just cutting it a little close).

He and I did argue a bit for a few days about how to handle the finances. We already use Quicken -- something we both refer to as "the best investment we've made" (bought mere days after I moved in) -- but we use separate computers. One with XP, one with Vista. And apparently, filesharing is damn near impossible 'tween those two. And I hate to "nag" at him to sit down with me and update the finances together. And so we were hitting a bit of a wall, there.

Anyway -- we are deciding to sit down together nightly (for now) -- so that I don't have to be the one "pushing" him into it, and we bypass the filesharing problems. But we were discussing, for lack of a better term, allowances.

And husband objected.

I don't know what else to call them. As I told him, it's a constant in every financial arrangement between partners I've seen -- some amount of money each partner can have to spend on items without having to run to the other partner for approval, whether it's "$20/month" or "everything I earn after the bills are paid."

But it makes him uncomfortable. Certainly in a gendered sense (the Man, Bringing Home The Bacon, giving the Wifey her little "allowance") but also because we are both sensitive to any implication of control or abuse on his part -- I grew up in a family absolutely soaked in domestic abuse and my own mother has, projecting, called him "controlling" several times.* He is constantly monitoring his own behavior for any sign of this being true. I am constantly watching my life as a whole to make sure it does not happen to me -- partly for me -- but partly, as well, because I am desperate not to pass that paradigm onto my future children.

Anyway -- just a bit of a fragment I felt like pointing out.

*See, to her, she started losing control of me, and then he showed up on the scene. I, being a mere child (a girl, no less) with no agency (even in my mid fuckin' twenties) of course cannot be the one to have gained control of my own self -- there was a MAN in my life now, so he must be the one controlling me! This is a result of the way she grew up -- this is the only concept of a man in a relationship with a woman that she has. She simply cannot understand it happening any other way. And that is just damn depressing -- and a reason I am very, very sensitive to even the slightest sign it may happen in my own life.

Words to be heretofore stricken from the English language.

"A racist."

As in, "That person is a racist."

There is no such thing as "a racist." This suggests a person is unique in practicing race-based bigotry. In fact, every single one of us both practices racism and benefits from a racist societal structure.

This can take the form of "overt" racist actions (using "the n word") or "subtle"/"passive" racist actions (picking a house in a "good" neighborhood; avoiding certain routes when walking to work; contributing to a matching 401(k); attending a prestigious university; eating a balanced, "healthful" diet). After all, a white person's ability to do any of these things does depend, in part, on hir benefitting from white privilege, from having had generations of stable family life, from living in an area with access to fresh foods and having the time and energy to prepare them.

It does not matter whether you chose something purposefully (or whether it is entirely out of your control), or whether you intended it to work against persons of color (or whether you were oblivious to its effects or even has nominally positive intentions). These actions, behaviors and attitudes still feed into the racist system.

Racism is not a quality that individual people hold; racism is a structure upon which we are all built and into which we all feed. Racism is a description of actions, behaviors and attitudes, not of people.

I will keep pounding this point for the rest of my days. And it holds steadfastly true as well for sexism, for classism, for ableism, for homophobia, and for all other sorts of bigotry and discrimination.

Effect, not intent, is what matters in the end.

Therefore, if you give a shit about making a difference, maybe you should stop getting so hung up over your (or anyone else's) intent, and start directing your concern toward the effect your life has on our situation.

Maybe if we would all start looking at things this way, we could affect some actual change.

Sure! Sign me up!

What does it say about my experiences with the healthcare industry that when I see this:

Why do we want to know more about you?

In order to personalize the site to you, we need to know certain things about you. For instance:

• We need to know your age and gender to remind you of the check-ups you need.
• We've got a great pregnancy program so if you're pregnant, tell us and we'll help guide you through a healthy pregnancy.
• Your email and zip code helps validate that you signed up for the site and no one at our organization did it for you.
• And so on..

I read this:

Why do we want to know more about you?

In order to increase our profit margins, we need to know certain things about you. For instance:

• We need to know your age and gender so that we can "adjust" your premium and care accordingly.
• We've got a great pregnancy program so if you're pregnant, tell us so that your employer has the option to discriminate against you based on it.
• Your email and zip code helps us earn money by selling it off to spammers, both "legitimate" and il-.
• And so on..

Cynical and unfair? Yes. But when you've lived the life I've lived, in the body I've lived, with the experiences I've lived, you'll understand why I'm not so eager to provide my employers' insurance "discount" company* with any of this information.

*I'm required to have this insurance in order to be listed on my husband's insurance, and I have to have a denial from my employers' insurance before his employers' insurance will consider any claim at all. Which is kind of easy, considering the former doesn't cover anything anyway. Throw soon-to-expire Medicare and on-going tertiary Medical Assistance for Workers with Disabilities into the mix, and I've got a headache-inducing full-time job on my hands juggling all of the above.

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.

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.

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.

Harbinger

This is how you know your economy is for shit.

Wal-Mart noted in its news release that gift card redemptions were below expectations and that customers appear to be holding gift cards longer and ''using them more often for food and consumables rather than discretionary purchases.''

We're doomed.

(article), (via)

Comments on TAPPED aren't cooperating with me, so I'll post it here.

Mark Schmitt on Edwards, poverty and race:

And yet, as I point out, he actually talks about poverty in a relatively safe way that treats it purely as an economic issue and he often (though not always) avoids the issues of race, racism and power that are inherently connected to entrenched poverty, especially urban poverty. His major speech on poverty last fall mentioned race only as something that used to be a problem, whereas now income is the problem.

The popular narrative today among many liberals and liberal-leanings seems to be that racism and misogyny are over, done with, relegated to a few extremists with no power to do anything about it, and instead the major social justice problem of our time is class. It's not exclusive to Edwards.

It's frustrating to try to argue with people who subscribe to this narrative, because they'll take any evidence of discrimination or mistreatment and automatically tie it back to class. Yes, the two (three, or more) are inextricably intertwined. No, this does not mean that racism and sexism no longer exist and are simply expressions of classism. It's an overly- simplistic view, and I suspect it comes in part out of a desire to free the movement of the conservative backlash against the increasing power of women and minorities in the country, an attempt to distill the progressive message and make it more palatable to those who suffer some forms of discrimination, but benefit from male or white privilege and are averse to a frank recognition of same.