for Christmas, i sent my mother a gift card for a local grocery store (she was already in awful shape financially — add in a ballooning ARM and a serious recession and things get pretty bad). i asked if the locations were any good (there were takeovers going on when i was moving two years ago). her reply,

“yes we are going to Food 4 Less they built one on North Court, you can only go there in the daylight, too many shootings”

mmmm, home.

i work in an office now dealing with those same people, those people everyone is so afraid of. the poor people. and especially those who are racial minorities (well, actually racial pluralities where i grew up). you know, the trashy people, the ghetto people, the gang members, the baby mamas and welfare queens.

when i moved out on my own in 2004, a four hour drive from anyone with whom i had even acquaintance, i was warned profusely about the dangers of being a young, single girl out on her own. in public or in my home - no matter, it’s all dangerous. really i shouldn’t be going at all, because you never know what could happen to you, you know, around them.

living in orange county i found in my college peers a strange aversion to using the free-for-students bus system to get around. the system was clean, safe, with good frequency and practically no point at which there wasn’t a stop within a mile at most. but these kids just couldn’t bring themselves to use it. my roommate was without her car for one day, just one day, and she skipped classes altogether rather than take the bus to school and back. my conversation with her made it quite clear why. she felt it was beneath her. and, my curiosity piqued, i found similar attitudes in many of my classmates through my time there.

why? what is it about the bus that makes it so untouchable? it’s not the bus system itself - again, impressively clean, incredibly easy to use, and free! throughout the entirefuckingcounty! no - it wasn’t a systemic problem. it was a problem of proximity. proximity to them.

and, ok, it annoys the shit out of me.

you aren’t going to die of the ghetto cooties if you find yourself within a couple yards of a poor person. they aren’t going to bite you. stop acting like you’re passing through the lion cage at the zoo.

this middle class obsession with “safety,” with where’s a “good” area to live, and especially where is an acceptable place to raise a child, with the very heavy implication that allowing a child contact (especially regular contact!) with the cooties-carrying poor folk is tantamount to abuse - it drives me absolutely upthefuckingwall.

i’m just tired of it. look: i grew up with Those People. hell: i grew up being part of Those People. and though i am mostly comfortable financially now (it’s nice, having a husband who can work full time, not having to rely on anemic disability benefits) we still live surrounded mostly by Those People. Those People are my people.

and i say this as a moderately conventionally-attractive skinny young white chick who dresses and behaves like a solid member of the middle class (trust me, i learned how to “pass”) - all the things which supposedly make contact with Them so dangerous - as long as you aren’t stupid (you know, the old flashing-your-cash cliche), you can walk among Them and make it out alive. because really, when you get down to it - look: They are the same species you are. you can even breed with one and produce fertile offspring! (well, i guess that’s not that much of a revolution - it seemed to be about the only purpose the higher classes [that's you too, mr. middle man] had for direct contact with Them throughout history…)

anyway - if you understand these people as people, and learn a little common sense (that is, not limited to “stay away altogether”) you’ll do just fine. even if you’re white. even if you’re middle class. even if you’re a chick. even if you’re all of the above!

and maybe if more of “Us” started treating “Them” as, well, us (and not in that fakey feel-good liberal way) maybe we’d find out that there’d be much less reason to stay away from Them than we thought.

This has been a rather curious endeavor, working at a state office that provides assistance to several disadvantaged groups — and being able to see things on the other side of that reinforced wall. It is an interesting perspective. And I think having a background (however limited) in disability rights and other issues of social justice helps me understand far better what is going on. I’m not sure about you, but I can hold two opposing ideas in my head at the same time and manage to see the truth in both of them. I am large; I contain multitudes. There are honestly many things that are beyond our ability to fix, address, or really do anything other than acknowledge, if that. Sometimes, there is nothing we can do. And yet — and yet. Are the way things are the way things have to be? When the way things are means our rights cannot be fulfilled, must we abdicate them? Are our minds, our worlds, so limited?

I think I’m glad this is a limited-term job; I am still debating myself over whether I can really handle this. But for the time being, well, I will. It’s who I am. And honestly, I love it. I only wish my body allowed me the option of doing anything else too.

So this is what I have been doing. I’m doing my best to restore, slowly and deliberately, a careful balance to my life. Come say hello.

amandaw on tumblr — for quotes, short thoughts, and other collections.

behold:

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….

even after death
they stuff our bodies into boxes …

– mscripchick

(Today is the Transgender Day of Remembrance. Click through for a short summary of those dead whose stories are known.)

I don’t know how you have a conversation with people for whom “because it’s right” is not enough of a reason to do something. I really don’t.

– commenter Isabel

… arguing with a doctor about weight is like arguing with a priest about whether you should be a Christian.

– commenter Eve

They’re waiting for the self-disclosure that explains why someone who seems so “normal” would identify with the disability community. They’re waiting to find out exactly why the friend who spoke up isn’t just like everyone else after all: The excuse that allows them to continue ignoring disability identity and culture. They’re waiting to be able to explain to each other, later, that:

“I don’t know anyone with Down’s. How was I supposed to know her sister had it?” [...]

The reason an able-bodied or able-looking person needs a reason to be a disability advocate is simple: So everybody else has a reason not to be. It’s “not their dog.” [...]

Disability culture (Deaf-Side debate notwithstanding) doesn’t require that you show your crip card, or your sister’s, mother’s, or brother’s, to be in favor of that which is right.

– Veralidaine

I write from San Francisco, where, in the months leading up the election, I saw a massive mobilization within the queer spaces in which I spend time to get people to vote no on 8, but I saw little or no public discourse among LGBT people about very important state propositions: 5, 6, and 9—all of which potentially impacted things like funding for prisons, drug crime sentencing, or the trying of minors as adults in this state….

– Adele Carpenter

Just take the other day. I was exiting a building in a stream of white people who had been able to afford the ticket to the show we had just seen. I was pushed off the path by two couples and a what looked like a father with his arm around his daughter. Wizard righted me. No one else came to help. They were too busy talking about the awesome Obama victory. Then, father ran down, literally, a poor black homeless woman who was trying to walk upstream. She kept saying “excuse me, excuse me.” Father pushed her aside; the white people on either side flooded around her. She was entirely invisible. I looked her in the eye and exchanged words with her. No one else seemed to see her. The Obama victory, you know.

– Wheelchair Dancer

Access is an all-consuming endeavor in a disabled person’s life. I love that the disability community learned to frame it that way: it emphasizes that the problem is not the person, their body or their condition; the problem is society’s indifference.

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.

I had always meant to expand upon this topic, but never found the right words for it, succinct and meaningful. But, well, that’s not exactly my style either.

My job situation is still shitty, and I’m currently part-timing at a retail pharmacy as a cashier. (Sample day: Mid-20s white guy “discretely” [read:blatantly] takes a picture of me on his cell phone as I am kneeling down assembling a battery display; someone shits in the toilet paper aisle [seriously! a person! took the time to unbutton their pants and all!]; I set alarm off while fetching pushcart from back room.) “The injustices of retail,” I said to my coworker, as I nursed the scratch on my finger from pushing that toothpick in a little too hard.

But honestly, I still do, and always have, appreciated working with the public. It’s the kind of thing that reeks a little too much of bullshit to say in an interview (”Really! I love when people show visible surprise at the revelation that I can do third-grade math!”) but, well, it’s true. I like people. I am, fundamentally, the kind of person who likes spending time with people (though my severe social anxiety always masked it). I’m not a butterfly by any means — good God, I can’t stand parties, pubs, or the mall at Christmastime, and I always need time to recharge after any extended social time — but I do enjoy interacting with a variety of different people, and there are days I go home smiling because of it.

Today I met a man named Robert. He stopped by to ask how long a sale price on a can of Folgers was supposed to last, and we ended up chatting for a good ten or fifteen minutes — the line piled up behind me, but I didn’t give a damn. Robert was in a wheelchair, for whatever reason, and was there to pick up his medication, whatever it was. He got his “paycheck” on the third of every month, and only the third (read “paycheck,” there, as Social Security disability check) but right now he was fighting with Verizon, who apparently shorted him half a hundred dollars worth of minutes on his phone, and he was going back-and-forth with them to get the situation righted, and anyway he wouldn’t be able to come back for his coffee til then. I was nodding and exclaiming the whole time as he was describing how much fighting he had to do — to get his transportation to the doctor, to work, to the grocery store; to get his medicine filled correctly and on time; to keep his welfare benefits flowing smoothly (there is apparently a very common mistake that gets made on his account every couple months, and he then has to make a dozen calls here and there to get things patched up, and then a few weeks later some new worker makes the same mistake again, and…) etc. etc. etc.

God did I identify, and I didn’t have to deal with the half of what he did. The fatigue and the worry and the energy and the stress and the wasted time — and when I related as much to him (having by this point unfolded my stool and sat down over the counter) he laughed it off — “Oh hell, I’m used to it by now — doesn’t bother me.”

I hope I never get to that point. No one should ever have to get to that fucking point. No one should ever have to spend half their waking hours, no fucking exaggeration, correcting other people’s mistakes just to keep the basic necessities of life covered — and then getting attitude from those same people for being a pain in the ass to deal with.

This is a serious time sink for the ill and disabled. It is time that could be spend — you know, maybe working? bootstraps and all — could be spent writing, could be spent playing board games, or taking a bath, or spending time with loved ones, or going out to eat — or any number of other things that are totally productive, constructive, positive things to do — which, to varying effect, do make contribution to wider society.

And it’s a lot of time. This is why I call it the second shift: much like the second shift of professional women, who arrive home from work to do the domestic work their husbands do not do: this is a disproportionately larger share of time spent fighting, always fighting, pushing determinedly (or tiredly) through near-constant resistance.

Resistance — truly the best word for it — it is as though “normal,” “healthy” folk are able to move throughout the world uninhibited, like pushing your hand into thin air — but sick people, disabled people must move through a world which is set up to prohibit their full participation — like pushing your hand into a thick heavy bog.

That is privilege. The ability to swim through your sea with nary a care, completely obliviously unaware of the freedom of movement you are so fortunate to have, while the rest of us have sand bags tied to our limbs, anchors roped round our waists, our feet set in cement blocks… and to look back at us and ask, “What’s taking you so long?”

It’s exhausting. I cannot convey in words how exhausting the fight is. Always on the defensive, always saddled with the knowledge that your basic needs require a struggle, while everyone else’s basic needs are pretty much a given so long as they put in at least a half-assed drop of effort. It’s not even just time spent, it’s energy.

Look at it this way. How do you build muscle? You subject your muscles to resistance, just enough to create thousands of tiny little tears in your tissue, which your body then, with rest and nutrition, repairs — which leaves you stronger.

But this does not mean that all resistance therefore makes you stronger. Because the more you pile on, the more tiny little tears you make. And the less time you have to rest, to eat and drink well, to tend to your bodily health, the less of those tiny little tears get repaired. And you find yourself, now, with millions of tiny little tears, and not enough time or fortitude to repair even only the thousands you had before this overload.

Which means you don’t get stronger. You get weaker.

“What doesn’t kill you makes you stronger.” What unadulterated bullshit. And it has the bonus effect of implying that those who do not feel stronger after a difficult incident, those who feel fatigued and despondent, those who see themselves as in a worse place than they were when they started — it implies that those people are choosing their fate. It implies that those people get something out of their misery.

Say, all you sick people out there: does any of this sound familiar?

What’s taking you so long back there?
I get it –you must just get off on being a victim.

Robert and I wrapped up our chat — turns out he lived in Anaheim for awhile, and also attended Cal State Fullerton; what a small world! — and I moved on to the next customer, affecting the smile and the sing-song customer service voice. Hi! Do you have your [Pharmacy Name] card with you today?

But it was nice, if only for a moment, to connect with someone. To, prompted by the unspoken invitation of a new friend, reach down into myself, and connect with the real person deep inside.

Maybe our struggles make us stronger; maybe they make us weaker. It doesn’t matter. We work with the tools we are given, and we still make something whole and beautiful, something worthy, something satisfying. Why do we have to come out of every fight bigger and “better”? Why can’t we be broken and hurt? Why can’t we cry, why can’t we curse, why can’t we be angry and disappointed and let down sometimes?

Right — because we wouldn’t want to make the rest of you face up to the damage you do to our lives. We wouldn’t want to “burden” you, wouldn’t want you to have to do anything to maybe reduce a little bit the fighting we have to do to live our lives. We wouldn’t want to make you have to think about how your actions and attitudes affect other people — wouldn’t want to make you uncomfortable.

When we are allowed to be angry, to be sad, to be bitter and disappointed, we are allowed to be human. When we are denied these emotions, we are denied our humanity. We are denied the full range of human experience.

It is fundamentally unfair — to weigh a person down disproportionately — to pile more and more shit atop their back — and then to grow indignant when that person lets out a sigh under the pressure — much less looks straight at you and lets rest the responsibility where it belongs. But this is how we treat each other — immigrants, queer folk, the disabled, those of color, the poor and disadvantaged — because we are fundamentally uncomfortable owning up to our own power.

Life would be so much better if we realized how much power we all have over each other — and how much power everyone else has over us — our interdependency. It is the concept out of which disability grows. And life would be so much better if we could look at this fact and see, not

scary,

or

unknown,

but

opportunity.

about Election Day. But until I get my bearings, I will tide you over with this picture, taken after we got home from our polling place, before I went and shed all my clothing to climb into bed and fall asleep before the polls even closed in PA.

Congratulations, all.

GO VOTE!

I am not a starry-eyed optimist. I can’t stand “inspirational” kitsch. I don’t fall for glurge stories. But dammit, people, tomorrow we are going to make history together.

I am so, so proud of the efforts I have seen from my community. It’s incredible, and humbling, to be a part of.

I’m going to be working as a poll watcher, addressing voter suppression/intimidation, so I’ll be out of touch all day. I’m going to go fucking nuts, people. There at 6:30 and polls close at 8, but whoever’s in line at that time gets to stay. So who knows how long it’ll be. I’m gonna try to last the whole day. We’ll see how well that effort goes.

I’ve never been excited about politics like this. I always cared — but I cared about changing things that weren’t right. Now? I’m happy. Truly happy. It just puts a smile on my face to think about it. We’re going to do it. We’re going to do it, all of us.

I’ll meet you Wednesday morning, my friends — morning in America.

My writing has fallen to the side as we go through something of a personal crisis. I hate declaring hiatus; closing off a door, any door, leaves me feeling cramped and constrained. But, yes, things are in a bit of upheaval at current time, and my participation in this amazing community will be limited for a time.

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.

Quick hit today, out of CAPAF’s report on how McCain’s health plan would affect women — well worth a read on its own — noted without further comment.

… Sen. McCain’s plan would encourage insurers to eliminate coverage of basic health services. These state requirements include:

* Twenty-nine statesƒƒ require cervical cancer and Human Papillomavirus screening Sixteen statesƒƒ require coverage of the HPV vaccine
* Thirty-one statesƒƒ require comprehensive drug benefit plans to include contraception
* Twenty-one statesƒƒ require coverage of maternity care
* Forty-nine statesƒƒ require breast reconstruction

Amanda flags a great post by Anne C at Existence is Wonderful, which catalogues “three different ways of looking at autism — in terms of neurological structure, in terms of lived experience, and in terms of outward behavior.”  And Anne does such wonderful things with this delineation. Click through to read the whole post, which addresses attitudes toward autism in particular, but I think Anne hit on something that can be safely generalized outward — her three approaches toward autism can also, in fact, be three approaches toward disability.

Some highlights, all emphasis mine.

My guess is that there are probably multiple underlying structural variations that can produce “autistic phenotypes”, and it will be interesting to see how this pans out, but at any rate, one important aspect of how I presently conceptualize autism is the fact that some structural differences do seem to really exist. And if the difference does indeed go “all the way down” to the brain, as it appears to, then it makes very little sense to (as some seem to) view autism as some kind of disruptive “module” overlaid upon a typical brain.

This is significant both in the cognitive science and the ethics realm, as it indicates (a) that experiments presuming autistic brains to be “broken versions of normal brains” are likely useless, and (b) that the best ways to help autistic people learn and develop functional skills are those which acknowledge an underlying and pervasive difference as opposed to those which presume that autism can be “removed” or “trained out” by simply eliminating surface behaviors.

Yes! Autism, or any disability, is not a case of “a normal brain gone wrong.” It is not a defect or even a modification of a “normal” brain. It is, simply put, variation. We will never overcome society’s confusion and mistreatment toward pwd as long as we think there is any such thing as a “normal” brain (or body) at all. Is any one color or pattern of a cat’s coat a “normal” one? Or are there many varieties, none inherently better or more-important than the others?

At heart of society’s approach toward disability is the assumption that there is a standard template for the human body, and if any one body turns out to be different, it is a deviation from that standard. As such, the solution to any problems resulting from said differences is to attempt to make up for that “deviation,” to attempt to make the “defective” body more like the standard template in whatever way possible.

Put this way, it is obvious that this approach is misguided at best. The solution is not to change the individual body to fit the narrow, faulty expectations, but to adjust those expectations to include the range and diversity of the human experience.

Similarly:

Mind you, none of this is meant to imply that I (or the researchers engaging in the experiments demonstrating visual-spatial trends in autistic persons) believe that autistic people cannot be disabled. Certainly, “uneven” development (which may include significant delays alongside “advanced” skill acquisition in some individuals), communication difficulties, and consequent social, educational, and occupational issues are very real. However, the existence of real disabilities and difficulties need not imply that the “whole person” is somehow diminished by the fact of being autistic, or that one cannot have attributes which exist as both strength and weakness depending upon the context.

This is where Anne comes back around to detail the third approach (outwardly knowable traits). She observes:

The orange column on the right of the diagram summarizes what most people probably think of as “autism” — that is, the externally-visible things that generally get people suspected of being, or identified as being, autistic in the first place.

This is where we see such things as diagnostic checklists, observations about a person’s developmental milestones (and when/if they meet certain expected ones), outward actions, language use, body language, tone of voice, social/educational/occupational success (or lack thereof) in the absence of modifying factors, etc.

What is interesting, and perhaps a bit unnerving, is that this category is at once the one people tend to put the most stock in (in terms of identifying autistics, in terms of determining what educational supports we might need, etc.) and the one most subject to cultural biases, personal biases, misinformation, and the ever-changing social lens through which different kinds of people are generally viewed.

…which, honestly, is a bit scary and unsettling for those of us who are going to be the ones to bear the consequences of any such things.

Catblogging will return on Friday.

***

My body is mine.

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

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

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

***

You know the slur idiot-savant?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

***

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

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

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

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

Yeahhh, that.

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

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

an AMEN?

Sometimes I read things — the whole of which I may not endorse, but which I still feel merit more attention — to which I have nothing to add. So…

shah8 on historical trends:

One of the things that I have noticed about big F feminism, and this may not be an accurate perception, so feel free to correct me, is that there is a much lower appreciation among women that enlightenment and oppression happens in cycles. Ever greater progression in civil rights is not typically the rule, especially beyond a generation or so.

How the hell can Bush redefine abortion as “any of the various procedures — including the prescription, dispensing and administration of any drug or the performance of any procedure or any other action — that results in the termination of the life of a human being in utero between conception and natural birth, whether before or after implantation”?

EVERY ONE OF MY PRESCRIPTION MEDICATIONS FITS THIS BILL.

Including the Lupron, which is a Major Treatment during which we are very strongly advised to be double-extra-careful in the area of birth control, because it can cause major serious birth defects. The Lupron which I am taking to shrink endometrial implants which can fuse together my organs and completely sterilize me.

Fucking caffeine fits this description.

It’s not just oral contraceptives, folks. It’s treatments which have no relation to family planning whatsoever. Just think of all the prescription medications that would be restricted.

How the hell? How the FUCKING hell? Are there any lawyers in the house who can address this one?

Tagging this one under accessibility just to emphasize how much this policy would affect my medical condition and my ability to WORK, to HAVE CHILDREN, to LIVE MY FUCKING LIFE without debilitating pain.

Fuck.

* The fact that The American Prospect has a “Religious Right Watch.” Sarah Posner’s work has all the substance of a celebrity gossip blog. There is palpable disdain toward the groups religiosity — which is distinct from their political involvement. I don’t talk much about religion here, mainly because it is a private matter and it doesn’t come into play with most of the stuff I write about. But when I see the “latest update” I feel like a rat in a cage, looked down upon, my every movement tracked and reported as though it is of great importance to the outside world. But is it? I feel like the figures in question are monitored not for their danger to progressive policy, but for their religion, full stop. Isn’t it just so funny?

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

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

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

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

* Pantyhose.

“Part of what makes America so beautiful is that there is no such thing as someone who looks like an American.”

You aren’t fooling anybody, sweetie.

It is an inspiring sentiment — something I wish were true. But this is reality, and down here, we recognize the wisdom of the old adage, actions speak louder than words.

America has always claimed to aspire to a just, egalitarian society. Then again, the bruised and broken woman presenting herself to the emergency room has always claimed to only have taken a fall.

The original immigrants from England came from an environment hostile to their religious beliefs, but don’t kid yourself: they intended to establish not a society that recognizes freedom of religious expression for people of any religious persuasion, but a society that recognized the freedom of religious expression for people who subscribed to their particular religion.

The Declaration of Independence did not recognize the fundamental rights and dignity of every person in the country’s bounds: it recognized that “All men are created equal.” Don’t kid yourself: they weren’t using that word as a gender neutral pronoun. And its founders, wealthy white men, held slaves, including black men, feeling no dissonance between their political positioning and their private lives.

Wealthy white Americans continued to hold slaves — who are we kidding? nobody held slaves; they dominated, abused, exploited slaves — for years and years after that; the “War of Northern Aggression” was fought over State’s Rights, that is, the right of states to proudly base their social and economic orders on a system of brutality against black bodies, male and female.

Even after the South was warred into submission, people of color were denied education, voting rights, property (and thus the ability to sustain oneself), bodily autonomy, and the respect and recognition of their fundamental humanity of the (white) people around them. Their welfare was purposefully neglected by the (white) people and their (white) established government. And whenever they had the temerity to advocate for themselves or even just dare to exist in public, they were harassed, attacked, raped, abused, murdered. This happened with the implicit consent of the (white) institution under which they existed.

When a noticeable portion of white America got its fucking head screwed on straight and started fighting to make right these wrongs, the violence was inflamed, and let white America not forget that legal recognition was not pushed through Congress smoothly and pleasantly. Let them also not forget that legal recognition does not translate into social recognition; to this day people of color fight to rise above the contempt their white peers have historically, and largely still currently, show them.

Native Americans were subject to nothing short of genocide from the moment the pigmentationally-challenged set foot on this massive continent. We fought them, hunted them, raped them, mutilated them, ruined their land, drove them west and then followed them there to keep the “rivalry” alive.

And make no mistake, we are equal-opportunity oppressors! We import poor, darker-skinned workers to perform our menial labor, constructing a social and economic order irreparably built upon their underpaid labor, their abuse and exploitation — their enslavement. Our history of genocide and institutionalization of people with disabilities is no secret. I’m not even going to bring up treatment of the trans/queer.

For all our boasting, the United States of America has never been a society dedicated to the respect and recognition of every person, of any class. Never.

Everyone, everyone knows what Chris Matthews means when he invokes the “regular American.” This country was FOUNDED on the privileging of the white, male, heteronormative, able-bodied default person. The Joe Six-Pack with a wife and two kids, who comes home from work every day to watch NASCAR and tosses around a football with his buddies. (Except when they privilege the multiple-vacation-home-owning, country-club-frequenting, Joe High-Class over him. But that is the only alternative.)

When someone speak about a generic American without any further context — or about a generic person without any further context — everybody knows what they visualize. And it doesn’t have tits, it doesn’t use leg braces, it doesn’t have “nappy” hair or “slanted” eyes. They may not be musing on an actual image of a white man, but if you introduced any of those other traits, it would be jarring. It would change the paradigm of thought entirely. We would suddenly be having a totally different conversation.

Everybody understands this. They may not devote any conscious thought to it — but the construct exists in their head. There is such a thing as “someone who looks like an American.” I could point out hundreds of them to you in the middle of our local Wal-Mart Super Center. I don’t think I’d find (m)any in the local mosque, assisted living facility, gay pride parade, homeless shelter…

Consider this: Mr. Obama’s own campaign recently had two women in headscarves removed from visibility in a campaign event.* How can this fit with his statement? What contortions would it require for Senator Obama to reconcile his actions with his words?

Ms. cripchick writes about Independence Day and mentions that her mother and grandmother stay home, “[not] for political reasons—more of not connecting with the holiday or feeling like it’s theirs” and it struck me.

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.

Ezra brings up an issue that continues to lie dormant.

Insurers charge women more than they charge men… studies show the effect is all the more pronounced when you’re dealing with health savings accounts and other forms of high-deductible coverage. A Harvard study from a year or so back ran the numbers and found that men under 45 racked up about $500 in yearly, out-of-pocket costs, while women spent closer to $1,200. Dr. Steffie Woolhandler, the lead author of the study, summed up the findings starkly. “When an employer switches all his employees into a consumer-driven health plan, it’s the same as giving all the women a $1,000 pay cut, on average, because women on average have $1,000 more in health costs than men.”

Here’s why: For most of their lives, men and women use health care very differently. Men seek episodic care: I sawed off my thumb, fell off a mountain, tried to stop an SUV with my Civic. Contact with the health system is relatively rare, and most everything is covered by insurance. Conversely, women seek a lot of routine care. Check-ups, pap-smears, reproductive health care, etc. The expenses are small, but they’re regular. So when you move towards health coverage where small, regular expenses come out of pocket, you’re erecting financial barriers to the type of care sought by women.

It’s also a good object lesson as to the folly of HSAs. The type of care that HSAs put a higher price tag on, and thus discourage, are small and discrete interactions with the health system. So they disadvantage mammograms and pap smears, but leave lumbar surgeries and angioplasties untouched. Anyone want to guess which category accounts for the majority of our health spending? Anyone want to guess which type of care studies suggest we discourage, and which type of care studies suggest we make more broadly accessible?

Why is this not on the front page of every newspaper in the country right now? On the screen of every cable news watching citizen?

What do you think the effect of this is on single mothers? What do you think the effect of this is on poor women? What do you think the effect of this is on disabled women?

How many people are unnecessarily unemployed because the health care that would allow them to work is denied them? How many people end up in the ER in the middle of the night because they put off routine care for so long, because it was money they didn’t have? Money that could instead go toward their education? Money that could instead go toward their children’s school activities?

How many children lose mothers, husbands wives, parents daughters, when one more woman ends up with cervical cancer because she didn’t have the time or money to spare?

Do we really think we can patch things over by throwing a couple dollars at the Komen foundation and calling it a day?

Think about your own mother. Your sister. Your daughter. Your partner, your lover, your best friend. Do you really want to just let this go because “that’s just how things are”?

I am tagging this one under “privilege” to remind you, the reader, if you are able-bodied and able-minded, that I, the bitch, the cripple, am subsidizing your health care. And that woman in the Section 8 housing who just got evicted because of the money she’s spent getting run around the ringer about those abnormal cells on her Pap test? She is subsidizing the yearly checkup you don’t even bother to get most of the time. And when you go home with your Z-Pack, knowing that you are going to be free and clear after seven days and a $10 copay, know that the money to pay for that came directly out of the pocket of that woman and her two infant children. And I hope you’ll find that redistribution worth it when she dies at 42 of cancer that could have been prevented.

Welfare queens? Taxpayer dollars? Hard-earned money? I don’t want to hear it. Fuck you.

let’s label this one “NOT surprising”:

One in five lesbian and gay people have experienced a homophobic hate crime or incident in the last three years.

One in eight have been a victim in the last year.

Three in four of those experiencing hate crimes or incidents did not report them to the police.

Only six per cent reported them to third parties.

Seven in ten did not report hate crimes or incidents to anyone.

One in six experiencing homophobic hate incidents in the last three years experienced a physical assault.

Eight per cent of all black and minority ethnic lesbian and gay people have experienced a physical assault as a homophobic hate incident, compared to four per cent of all lesbian and gay people.

One in six lesbian and gay people have been insulted and harassed in the last three years because they are gay.

One in eight lesbian and gay people experiencing homophobic hate incidents have experienced unwanted sexual contact as part of the incident.

Overall, three in five lesbian and gay people have been a victim of any crime or incident in the last three years.

I think we all know that POC are subject to a higher rate of violence and harassment than the population as a whole; for every minority status added, that figure rockets higher and higher. how many trans people of color have been shunned, beaten, raped, killed? how many disabled lesbians? how many poor gay men? how many sex workers of any orientation?

the less a person conforms to the default normality, the less human they become, and thus the more subject to brutality, in an attempt by society to assert dominion.

I had an english teacher explain to me once that in film, in novels, in plays, and other methods of storytelling, the author only gets one “gimme,” one unexplainable phenomenon. the rest of the piece needs to be internally coherent and consistent. any more logical inconsistencies and the audience loses immersion, they lose that sense of believability, because they are being reminded again that this place they are visiting is not real and could never be real.

and honestly, I think that society can work that way too. a person can have one “gimme” and still succeed in the public’s eye. a person can be black, but they have to be higher class, they have to be heteronormative, they have to be fully abled, they have to be conventionally attractive. only then are they accepted as an honorary “full person.” similarly, a person can be gay, but they must be white, upper class, fully abled, conventionally attractive, and conforming to a tame boundary of gender, never pushing their confines too hard, to be accepted as honorarily “real.”

the more you, as a person, fail to live up to that standard, the more you remind everyone else that you are not that standard. people can only ignore so much before they fail to think of you as human at all.

and once you reach that point, you’re one stroke of minor misfortune away from dead.