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.

A Desperate Plea to Mr. Matthew Yglesias

Dear Matthew,

Please, for the love of all that is holy, stop using large-size portrait photography to illustrate your blog posts.

I sit at my computer, for the most part, either casually or barely dressed. And though I am safe at home, my lizard-brain is still always at ready for potential offenders. So when I see sixty-five kilopixels of Bobby Jindal staring at me from my computer screen, I squirm in extreme discomfort. There is a creepy man staring wide-eyed into my face. (…if I’m lucky) It skeeves me out.

Your posts are good enough to stand alone. If you must employ graphical illustration, there are plenty of other photographs of Bobby Jindal that do not stare intently at my body from behind my LCD. If you must use mug shot style portraits, at least make them small enough (a hundred pixels length tops?) that my lizard brain does not mistake them for potential real, live persons who may be paying me undue attention.

As it is, I usually have to skip the posts, or at least enough of the posts to scroll down far enough to hide the offending eyes, which bear these illustrations. This does not serve your interests, does it?

Thank you in advance for your consideration.

Signed,

A Long-Time Fan Who Has Finally Had Enough, Dammit

P.S. I do kind of get a kick out of the Hoover pixxxxx. Subtle and snappy way of making your point. Kudos.

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.

Your progressive media, folks.

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.

Consider my scenario.

The eligibility requirements for Social Security Disability, in a nutshell:

• Have a medical condition (mental or physical), or any combination of multiple conditions, which
• Impairs your ability to work for pay, such that
• You cannot pull Substantial Gainful Activity, which is currently (for 2009, non-blind) defined as
• $980/mo.

Do the math: that comes out to a yearly wage of $11,760 before taxes. That doesn’t have a whole lot of buying power, even in flyover country.

I applied for disability, and was approved, in 2005. At the time, SGA was defined as $830/mo. At the same time, I was seeking residence in Orange County, California.* The cheapest place I could find (with access to a reasonable bus route to my university) without rooming with strangers was $860. That was for a “bachelor” apartment without so much as a kitchen.

My disability payment — as a Disabled Adult Child (what an unfortunate name!), it was based on my mother’s work record — was calculated to be, if I remember correctly, $844. That was a California payment — the federal payment at the time was (iirc) $579.

So, my disability payment didn’t so much as cover rent. It didn’t help that my old buddy Gov. Schwarzenegger kept cutting the cost-of-living adjustments for the blind and disabled, in order to balance the budget shortfalls created by his tax cuts for the wealthy. Priorities, people!

Anyhow. SSDI recipients are eligible for Medicare coverage beginning their 24th month of benefits. Which is nice and all, but it meant two years of paying out-of-pocket for the drugs I needed to be well enough to leave the house for more than five minutes at a time. Expensive drugs, needless to say, which had no cheap generic alternatives.

But time passed, and as of February 2007, I became eligible for Medicare. Finally! I was able to seek full treatment for my medical condition, no longer doing the bare minimum to get by.

But as things improved, I faced a conundrum: With the treatment Medicare paid for, I found myself better able to work… enough to earn something approaching SGA… and my condition was only improving. This would have resulted in the loss of my disability benefits, which would also mean the loss of my Medicare coverage. But the private market refused to insure me. Which means I would no longer have been able to afford the treatment that allowed me to work. So my condition would have deteriorated, rendering me, again, disabled. At which point I would be eligible for Medicare… and…

A vexing situation, in my case “solved” by my loss of benefits upon marriage (a feature of the DAC program). Were it not for that — or if I fail to remain married for the rest of my life — I would be back in the same endless circle.

And I know I’m not alone.

- - - - -

*Spare me the “Well, you could have moved somewhere cheaper!” Most people can’t simply pick up and move sight-unseen. Especially the poor and disabled, who can’t exactly hop on a plane and just count on reliable residence and employment being available for them. For the most part, people who do not enjoy considerable economic privilege are geographically immobile. If they haven’t already lived there and they don’t happen to have family there, chances are it isn’t going to be a smart move for them to move there. The ability to research a new area, conduct a job search from afar, and pick up the pieces after the move (you’re going to have to find new: furniture, vehicle, auto and home insurance, health insurance, family doctor, specialists, etc. — the latter which are a huge burden [do you have any idea how hard it is for the health-challenged to find a good, communicative, knowledgeable, effective practitioner to treat their ills?]) is a privilege, and no person should be judged for lack of it.

Recent weeks have found me working for the Community Voters Project, a nonprofit non-partisan organization from the Fund for the Public Interest. CVP works to register African American voters. (They will register anyone who approaches, but they seek out communities of color specifically.) Yeah, spare me the ACORN talk.

It was an interesting exercise in not voicing my opinion about, well, anything. Which was difficult, especially when people would persist in trying to talk politics with me. I fell back on talking about how exciting and important this election was, and how awesome it is that so many people are starting to engage with the political process, and how for whatever reason, this election has a lot of people getting up and taking action, which is a Good Thing.

I was pleasantly surprised to find that almost everyone I approached was not only registered, and not only voting (and always for Barack!), but was taking active measure get the people they knew involved, too. We visited a couple African Methodist Episcopal churches (I browsed through a book on women and global poverty at one, which was excellent), where there was naught an unregistered adult to be found. I spent a lot of time in front of the Christian Outreach and doing some door-to-door in the majority-minority parts of town. It was a genuinely exciting job to do, and incredible to see so many people inspired to take action themselves. I took a huge hit for my efforts physically, but I’ll never regret it.

I did notice, however, that while every black person I encountered supported Barack, there were still a considerable amount of them who were adamant that they were not going to vote. And there was only ever one reason they gave for that decision.

“Someone’s going to take him out.”

A lot of people expressed fear, or resigned certainty, that a President Obama would be swiftly assassinated. And you know what? I just don’t know what to say to that. It just makes me profoundly sad.

One day my husband is dragging me (who likes to play sports, but has no skill at playing sports, and had zero interest in pro sports whatsoever) along to a playoff game, the next thing we know I’m a rabid Penguins fan. I “accidentally” bought a six-game mini-plan last season (long story), which didn’t help matters. I got to watch Malkin step up the points race while Sid was down with a high ankle sprain. I developed a quick appreciation for Marc Andre Fleury, the deft and nimble crosseyed French-Canadian crack monkey, my one and only celebrity crush (seriously, watch that man move — the splits, the dives, the spins, the full-getup-and-skates hops — and watch his dark eyes dart around behind his face mask, always searching — and tell me that isn’t impressive as hell). I got to be a part of the incredible energy in Mellon Arena during the final games of the season. It’s a drug. And I got hooked.

I don’t know what it is about the game that draws me. It’s not for a lack of other sports in the household — hubby is a baseball stats geek, and also watches football, basketball, and NASCAR — none of which interest me much. (Surprisingly, the most tolerable of those four is the last one.) But for whatever reason, now, the sound of skates on ice, and the silly epic-sounding Penguins intro music, gets me in that same giddy mood children get in on Christmas morning.

One of the things I appreciate most about hockey is that it didn’t seem to have the exclusive atmosphere of, say, your football or basketball. There are no cheerleading squads or “dancers,” and the ads during the TV broadcasts tend to be pretty mild. No soft porn, GoDaddy, macho-man robots, local radio-sponsored hot babe contests, and the like. There is an element of performed masculinity, as in just about any mainstream pro sport. I mean, fighting is pretty much a central tenet to the game. But — and I’m having trouble articulating the distinction here — while there is definitely quite a bit of feminist analysis to be done on the game, the players, the culture, the advertising, and so on — there isn’t quite the same constant reminder to women that this isn’t for you.

It’s hard to watch football and not be bombarded with messages that are explicitly and enthusiastically geared for men. Not men as humans, but men as men. And not even men as men, in an affirmative, appreciative way — but men as not-women, in a taunting, exclusionary way. It is telegraphed quite clearly that women’s only place in the game is for men’s consumption.

I never much got that sense in hockey — or NASCAR, surprisingly, as I said. The culture was definitely geared toward men, but it didn’t shut the door on women. And I appreciated that. “Honorary man” still isn’t good enough, but it’s a hell of a lot better than “man’s property.”

In football, women are a part of the game as bikini-clad cheerleaders. In racing, women are part of the game as on-the-ground reporters. And while the latter sport is hardly innocent (trust me, I’ve hardly a lack of criticism for the sport), that difference does send a message to the fans at home.

All of this is a lengthy introduction to my home team’s latest marketing project: Hockey ‘n Heels.

I mean, the program itself doesn’t sound so bad, right?

One (1) game ticket in the Club Level Seating for three (3) games which includes event ticket, event premium item and buffet dinner

Locker Room Tour

On-Ice Demonstrations with the opportunity to sit in the Penalty Box/Player Bench

Attend a morning skate

Meet and greet with players after the morning skate

Limited Edition Framed Art Piece

Sounds pretty cool. And really, I don’t see how this would appeal any differently to women than to men, or children, or hockey-lovin’ aliens from outer space. At least it isn’t a hot stone massage and black-and-gold manis and pedis. It’s cool, exciting, relevant stuff. Actually hockey-related. Nothing any female hockey fan wouldn’t love.

Why, then, the stupidass name?

I don’t know about anyone else, but I’ve never seen anyone standing in line to get in to Mellon Arena wearing four-inch Manolos. Pretty much everybody comes wearing some sort of Penguins jersey, shirt, jacket or sweater, possible a Penguins baseball cap or beanie. Most people are in jeans or shorts. The women who wear Pens gear tend to wear oversized men’s sizes. They look frumpy. They look “ghetto.” And they don’t give a shit! They’re showing team spirit, dammit.

I have seen a couple men in business suits, but I haven’t seen a single pencil skirt yet. And I’d say it’s somewhat impractical to mount the steep steps up to your seat inside the arena if you’re wearing shoes that double as an assault weapon.

OK, there’s nothing wrong with heels. I understand a lot of women love them. I love my skirts. I wear makeup (sometimes). I like getting all dressed up. I’m pretty cool with flowers and I like to bake. Hell, I actually like doing the laundry! All of which are trappings of femininity, some of those things perfectly harmless were they not bound to gender roles. And I don’t think it’s really feasible for most women to completely eschew anything that could possibly be “tainted” by the patriarchy. So this isn’t a criticism of heels themselves.

It’s just out of place, is all. I see a hell of a lot of women in those stands. Most of them are jumping and screaming and enjoying a beer just as much as the men.

But they needed a clever name that would capture female fans. Thus, heels.

When I see or hear an advertisement for this program, it just reminds me that I’m not a “real” fan. I’m not “supposed” to be making a damn fool of myself, shouting criticism from the sidelines, quoting stats in conversation with my husband, biting my lip when the game gets particularly tense, and jumping to my feet every time the horn sounds for a goal. That’s what men do. Women sit pretty, toss their hair, and giggle politely when men do something stupid. They’re not supposed to enjoy the game, because women don’t like sports for sports’ sake. They just get dragged along by their husbands. The only way to get them interested is to appeal to the girly things they actually like to do. Don’t cha know.

Ugh. I don’t know what else to say. I’m disappointed. If I had money to throw around, maybe I’d offer them a considerable sum just to change the fucking name. It’s patronizing. Shame.

I hear it in just about every political commercial now. What does it mean?

“He shares our values…”

“Family values”

“American values”

“Traditional values”

If nothing else, this election season makes one thing quite clear: in a sociopolitical context, the word “values” is nothing more than a code word for “white.”

The fancy-schmancy cook books tell you to soak your onions in cold water, as this will reduce the icky aftertaste and bad breath associated with the stinky bulbs. What they don’t tell you is that when your husband places the plastic-wrapped plastic bowl of swimming onions in the refrigerator so that he can use the already-soaked onions on his next sandwich, salad or other consumable, that same lingering bitter essence which is removed from the onions will be imparted upon every other item in your refrigerator. And on the refrigerator itself, for that matter.

Purified water? Iced tea? Crisp fujis? Low-fat yogurt? Soda cans? No innocence is left unspoiled. Beware the cold-soaked onion, my friends.

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.

Governer Ed Rendell just today put through, among other thing, a hiring freeze for state agencies.

What this means for me is the agency who set up an interview with me yesterday, the agency for whom I had the highest test scores and an important personal connection, had to call me back today and cancel that interview. Our credit card is already almost maxed out with living expenses. And unfortunately, due to my disability, my options for work are severely limited. I was looking for stable, steady, secure work. I don’t have the option of taking a midnight stocking shift or becoming a truck driver or dealing out Big Macs at Mickey D’s.

What it means for the rest of the state? Any reader of this blog should well know. Budgetary restrictions such as this means cutting back on services for the most needy. Pregnant teenagers — recently released convicts — children with disabilities — all these people will see possibilities taken from them, right as they most desperately need something to lean on.

IF YOU ARE A PENNSYLVANIAN, PLEASE CONTACT YOUR LOCAL REPRESENTATIVE AND WRITE A LETTER TO MR. RENDELL EXPRESSING YOUR DISAGREEMENT WITH HIS DECISION. Even if you do not reside in PA, an email won’t hurt!

I am already late for physical therapy, so I can’t put up links quite yet but I will find and post them when I get home. For now, Mr. Rendell’s information should be easy enough to find on Google. Here is an article from the Post-Gazette I’ve not even had time to read. And thank you in advance for any help.

http://www.post-gazette.com/pg/08261/912672-53.stm

This is a sign on the side of PA Route 19 heading south. First, an advertisement for McDonald’s desperate attempt to create a new product out of the same old ingredients. It is a considerable improvement over the ad formerly in that spot, featuring a giant cup of their lightly tea-flavored high fructose corn syrup water excuse me, sweet tea, which made me instinctively reach for the car door handle to spare myself the clean-up job when I vomited at the thought.

Second, a pair of legs. Legs that are: skinny, hairless, devoid of blemishes, white, shiny, and posed in an awkward and uncomfortable position. Oh, and don’t forget, as the photo doesn’t do the picture justice: airbrushed. Very much along the lines of something like this. (Or, of course, this.)

It’s hard for me to put into words exactly what the problem is with this billboard. Maybe it’s because varicose veins are used against women far more often than men. On a man, it is what it is, and who cares if it is? What’s it to you? Was he put on this good earth to make you feel a little wet? No, he exists for his own purposes, and if you have a problem with that you can kindly go fuck yourself.

But it’s understandable why a person would want treatment for them, much as I still wish I could get braces. I’ve had veins pop out on my hands at various times in my life, and it was always uncomfortable for me, and ultimately reinforced my sense of fragility — I was always afraid of how easily my bones might snap, or my veins ruptured severely by an otherwise mild cut or scrape. And, yeah, I was self-conscious.

But really: think of how you might possibly choose to advertise such a service. It’s not hard. We are positively soaked in marketing. Our economy exists on the back of advertisement. You’ve seen ads for similar services before. Stock photos don’t even need to come into the picture.

But they do. And what is the message it sends when this is the photo that is chosen?

Your legs should look this way.

But they don’t. Your calves have actual muscle to them. Or even fat. There is stubble, or considerable hair growth, which might be fine and downy and light, or might be red, or dark, coarse, frizzy, curly. Maybe your closest shave still leaves that slightly mottled look. Of course skin is not a single color; there is some mottling and mingling of different hues and shades; I can see a little blue and purple mixed in with a decidedly peachy color, but yours might trend more toward olive or plum. I have moles all over like freckles, little and flat, but dark and brown. Right now there are very deep red marks in about five places from shaving cuts over the last six months or so (my skin takes a long time to heal) and lines imprinted from the chair my leg was resting against — low circulation, low blood pressure will do that to do — and my bones stick out. My calves are rather skinny, but they’ve always been; even now that I have settled in at 175, my calves and forearms are like toothpicks — my wrist measurement is still 5″ rounded up. But there’s no muscle tone, so I still fall short of the photoshop standard.

So do you.

And when you look at that picture, you are keenly aware of this fact. You might not consciously think: “I don’t look like that.” But our minds are much more than what we consciously think. You are completely, mundanely aware of the fact that what you look like and what the ideal looks like are in two totally different realms.

You know that if you have varicose veins, and you receive treatment for them, and they subside, your legs will still not look like that. You may think they look better, but they aren’t going to look like that. Ever.

And that is the message you take away. You are not made of the right stuff for beauty. You are a totally different animal. You are fundamentally unfit. It doesn’t matter what you do. And that is a failure not of the standard, but of you, personally. You owe it to society to fit that standard. And because you don’t, you are personally slighting every person you ever come into contact with. Ever.

a husband who will:

1) go to sleep around 11 p.m. as usual; 2) wake up at 2 a.m., 3) fumble into pants and shoes, and 4) drive a mile and a half to your pharmacy; 5) pick up and pay for your medication; 6) drive home; 7) get a glass of water, 8) wake you up, and 9) make you take your dose; 10) get undressed and 11) go back to bed; 12) wake up at 6 a.m. to get ready for work.

I have not yet received my Flexeril in the mail. It should come in a couple days, but I’ve been out since Saturday. I’ve coped alright until today. Early in the afternoon my back spasms returned with a vengeance. For about two hours I sat through continuous spasms without stop, every ten seconds, bam bam bam bam one right after another. They subsided some after many painkillers, but a couple hours later I had a strange nervous attack. My whole body shook and swayed, and my vision went really screwy (inability to focus or control aim).

I ended up at MedExpress, where we waited a half hour and paid $25 to walk back out with a prescription for a week’s worth of the Flexeril to tide me over til my shipment came. Husband drove me to CVS, where we dropped off the script and wandered around for a few minutes waiting for my name to be called. When we went to the counter, we were informed my insurance wouldn’t pay for it. Well, duh. I said that I wanted to pay cash for it and the pharmacist told me that my insurance wouldn’t allow the prescription to be released until 2am tonight.

… wait, what?

What the hell was the point of this whole endeavor? To make me suffer through 30 minutes of Wolf Blitzer and deprive my already stressed husband of another hour of sleep? To further drain my already anemic checking account?

I give, I give! Uncle! Here, I only got $14, you can HAVE IT, just leave me alone already!

Why didn’t the pharmacist just tell me “You can’t fill this if your insurance has already paid for this month’s supply”? I mean, I told her what was going on when we went to the dropoff counter. Can my insurance really tell me I’m not allowed to have medication that a doctor prescibed me except when they pay for it, under their terms?

I just don’t get it. There’s a disconnect here. As long as my insurance isn’t paying for a treatment, they shouldn’t have any fucking say over what I can have, when, where, how much, for how long. I’m sorry, they just shouldn’t. And my pharmacy should not be complicit in denying a suffering chronic pain patient much-needed treatment.

Especially a medication as tame as fucking flexeril.

As far as I see it, the only parties who should be involved here are me, my doctor, and my pharmacy. Unless I choose to involve them, my insurance should not enter the picture. If they do, they should only be allowed to assert control over treatments they are paying for. If they wanted to dock me a dozen pills from my next fill, fine. Or if they wanted to charge me however much to make up for the “extra” medication I’ll end up having. Or if they ant to prevent me from refilling until however-many-days after what it would’ve been without today’s script. All of that is — well, it whiffs of bullshit but I can understand it, at least. But how did we make the jump from that to this? Can someone point out the missing piece here?

Hell.

You’d think, in a situation involving a patient, a nurse, a doctor, a pharmacist, and an insurance agent, at least one of those would be in it for the betterment of the patient — right? ‘cuz I’m batting oh-for-four right now.

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.

Life has, that is. I’ve been caught up with my mother visiting from California, interviews, family time, relationship issues. I’m not dead yet. I’ll be back to writing once I can get my tired ass settled down in a task chair someplace.