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.

Surfing etsy for a couple incidental items (light-blocking sleep mask; neck warmer for the Pennsylvania winters, as scarves are too much fuss for someone who has trouble and pain with any movement while so bundled up) I stumbled across what looks like a wonderful store for people with any number of chronic conditions or injuries, including but not limited to my old friend fibro.

The store includes neck/shoulder warmers and scarflettes, keypad and wrist rests and drink cozies. The store and item descriptions indicate that they drew inspiration from the needs of their mother(-in-law) who has fibromyalgia.

The items seem, to this trained eye* to be quality-made, and made with the needs of the users close at heart. They aren’t the standard, mass-produced designs. The neck/shoulder warmer looks absolutely perfect for my own needs — moist heat to loosen and relax the tight, tense neck and shoulder muscles, but not too heavy, as the weight only exacerbates the exact problem I’d be trying to correct! And it’s shaped perfectly to cover precisely the area I need, as opposed to the traditional sorts which are simple oblong shapes meant to maybe cover a few-inch-wide area of the neck. And I’d love the wrist rests at work.

Every person’s needs are different, but if yours are similar to mine, this is definitely worth a look around.

The Ferris Wheels

A shot of the current front page

***

For those who aren’t familiar with Etsy, it is a site dedicated to handmade items, where anyone can open up their own shop and start selling. The wonderful thing about it is that the prices are very reasonable, for the most part (it costs about as much to shop at Etsy as at Amazon and other low-price retailers), there’s a much wider range of taste and style available, and almost every seller is open to customization — whether you’d like the same item with that cute little penguin fabric or you want to add a couple pockets there or you need a different size, or… I’ve worked with a range of sellers on Etsy on custom items and they’ve all been excellent, and I’ve been very happy with the products I end up with.

Other etsy sellers worth a perusal (I’ll mark those with whom I have experience):

utilitywear (there will be a post of its own for this one- purchase experience)
florspace (purchase)
umeblossom (custom purchase)
leapinglizards (custom purchase)
danielleloporto (I have had people stop me in the store asking about these wonderful little things - they save me a lot of time and energy and they’re also cute as hell!)
seabreezestudio (custom purchase, VERY easy to work with, quality stuff!)
bagonebagshop
simbiosisbyjulia
jpatpurses
oktak
charmdesign
jennalou06
oladesign
tahirih
lingglass
lobbyloucrafts
cutecumber
borsabella
happykatbags
heatherrlange

Take a look around — the links above are just the stores I’ve stumbled across that fit my personal taste (to varying extents) — there are many more items and styles available.

***

* Over my lifetime I have used so many different assistive items, in these categories and many others, that I can fairly accurately predict the comfort, quality and efficacy of an item for my needs based on its appearance and description (and occasionally on a tactile test, but I’ve found anymore I don’t even need that). Keep in mind that I have not purchased from this seller (yet!) but I feel very safe and confident in recommending the items even without that.

Monday, I start my first full-time desk job.

It’s been a long five months, stutteringly under-employed, thrown off balance by Uncle Eddie’s decision to freeze state hiring for the budget year (and he’s talking now of cuts yet to come), which ended my chances of procuring a state clerk job. I was hoping to be employed with the state (or county, who works off the same civil service test result list) for several reasons — good pay, great benefits, and most of all, security and stability. Working with a disability can be a realizing experience or a crushing one, depending almost entirely on the environment in which you work: your co-workers, your supervisors, company policy. With the state, I would know one thing: there is a very low likelihood of running into any trouble, and if I do, I can be reasonably confident that it will be taken seriously in the upper levels.

This job was approved ahead of time; it is temporary, until early spring, processing energy assistance applications. I may be eligible for unemployment when I am laid off, which may actually be an ideal situation considering my disability: work one third of the year, rest the remaining two, then start again next winter. I may also be eligible for transfer to any of the various positions for which I was being considered when the hiring freeze came down. Regardless, I will have opportunity even when this position ends.

We can now pay off our maxed-out credit cards (which have borne our living expenses while I was without income) as well as some other debt (for instance, the car I totaled last December). I now have a predictable weekly schedule around which I can plan my medication, my laundry shifts, my showers (I have already decided: Saturday mornings and Tuesday nights). I will be able to afford the little things I have put off during these five months — a memory-foam bed topper (down, surprisingly, is not nearly so good for my body as one might think) (and though this item seems like a luxury, keep in mind my stress, pain and fatigue throughout the day stems directly from my insufficiently-restful sleep), a new shower chair, comfortable layering pieces for wintertime. And the particular job also solves a couple major problems in my personal life in ways too complicated to explain here.

2008 has not been kind to me. Things I never imagined could happen to me, things I have constructed an identity around avoiding, have happened. My late June vacation was the one bright spot in my rear view mirror, but some very bad news broke soon after and dampened any remnant joy I may have had from it. (I still have not processed those four thousand pictures; until recently, it was too emotionally painful.)

But finally, now, something has gone right. And recent weeks have been, on the whole, positive. The stability I have been chasing for so long, it seems, has finally arrived. And I couldn’t be happier.

Yet more bad news for the upper-class white liberals who are perpetually Concerned About Your Health(TM). Go figure.

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.

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.

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.

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.

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.

Yes, that’s my bra strap. Why are bra straps so scandalous? OMG! That woman is wearing a… BRA! (faint)

My doctor is massaging my insurance companies to pay for me a good TENS unit.

I have been using the electrical stim at physical therapy for a little over a month and combined with some simply stretching exercises to help build strength and flexibility, my awful lower back pain is mostly gone. Woohoo!

My therapist sent me home with a loaner unit on Wednesday and I’ve been playing with it ever since. I love it. It takes some trial and error to get it to stick in the right places, but it’s helped quite a bit.

And it’s something I can have on my person at all times — not just at home (hard to keep a gel pack on my back all day) — that interrupts the pain signals, meaning I can reduce my pain killer use correspondingly. The fewer narcotics I take, the better. Especially with that full-time desk job I will be starting in a couple weeks.

But I am a naughty girl. I have been browsing Etsy for a cute and stylish case to carry it on my hip…

Welcome to the fatosphere, amandaw.

5′8″. 173lbs. BMI 26.3. Sizes 12 and 14 top and bottom. 38-34-44.

My habits have not changed. I eat the same shit I ate six months ago, and get the same amount of physical activity (trust me, that is carefully monitored). The only thing that’s changed is the shot in the ass I get once a month.

After my body settled down from puberty, I was 5′8″, 110lbs, 16.7 BMI, sizes 6 and 8, 32-25-36. I had no appetite and was visibly undernourished. Fending off accusations of anorexia, I would insist that “I’m not fat; I have fat.”

Just before I turned 19, I started on the Lyrica, which gave me a normal appetite. After about a year of slow and steady weight gain, my body settled in to 5′8″, 150lbs, 22.8 BMI, sizes 8 and 10, 34-30-40. And there my body stayed for just about three years.

Three years during which I lived a variety of lifestyles, to use the popular vernacular. I ran around college eating quite a bit; I ran around college eating almost nothing; I sat around my mother’s house eating fast food at least five times a week; I started working on my feet eating healthy portions of home-cooked family means (sandwiches, chicken, grains, pasta). And I stayed the same weight through all of that.

Last night, I went to a friend’s house to try on suits for an upcoming job interview. She used to work as a paralegal, so she had an abundance of suits. She is, well, the average American woman size-wise. She had several suits mostly in 10 and 12 but across a range of sizes.

I tried on every suit. I think there were seven or eight.

None of them fit.

OK — one fit… if I didn’t zip up the pants.

I was fucking humiliated.

I haven’t been able to fit my own jeans recently. I am fortunate that the only thing I’ve had to leave the house for recently has been physical therapy, so I’ve had official excuse to appear in public wearing sweat pants.

The friend was very helpful, and we ended up at Kohl’s where she bought me a fitting skirt, pair of pants, button-down top, and thong.

(Which makes her the first person to ever buy me underwear.)

I was not well. I had done far too much that day, to begin with: wake up early, physical therapy, driving to Canonsburg and back for aforementioned syringe in the ass, and shower, all without a single pain killer. I should have known to take one before going to the friend’s house, because trying on clothes always exhausts the hell out of me (I’d put it on the level of a long shower in terms of physical cost). But I didn’t until all the clothes-trying-on was done.

The physical consequences should be obvious, but something else happens when I’m in that kind of state. My brain goes blank. I am putting so much energy into staying awake, alert, upright, and minimally active that I don’t have any brain power to spare — to form coherent sentences, find the right word for the idea I am trying to express, offer responses that are relevant to the topic being discussed, or just plain make any sense.

Being social in this state is hard enough. It’s even harder when there’s the dark cloud of humiliation hovering over your head.

I looked myself in the mirror. I arched my back, sucked in my stomach, straightened my shoulders.

The gut didn’t go away.

God. I don’t know how to say this. It’s hard. It’s really hard. Up until recently I still saw myself as the skinny chick. My brain still thought it was stuck in the body I inhabited as a teenager.

And now? Now I’ve finally caught up: my brain feels like it’s stuck in the body I inhabited those three years prior to the Lupron.

I was OK, mostly, as I grew. I’ve been involved in fat acceptance for a while now, and body positivity has been a pet issue of mine for years and years; I trained myself to stop finding things to disparage, whether in myself or others, and instead find things to treasure. I accepted my fat rolls, and welcomed the substantiating of the tits. I admired my ass. I was building muscle; my thighs are thick and solid and I rather like them that way.

But now I can’t fit in my fucking clothes. And it’s fucking embarrassing.

***

I have a lot to deal with, personally. But right now I am fervently hoping that cessation of the Lupron will go hand-in-hand with shedding of the weight I’ve gained. I’m already damn sick  of it. The first month I suffered worse pain, dizziness and tremors and fainting spells; I had two months of reprieve after that, and in the last month the back pain came back like a boomerang and hit me in the ass, and brought with it cramping, nausea, and a scary amount of hair loss.

I have two months remaining. One more shot.

I’m scared. I’m scared I’m going to keep gaining. I’m scared there are some new and even more bizarre side effects in store. I’m scared that after the Lupron is done the pain will come right back. I’m scared it won’t have done anything.

I’m scared that all of this will be for nothing.

I’m scared that the Depo won’t do my body any better. I’m scared my periods are going to be as bad as ever when I come off the birth control. I’m scared we’ll end up running into trouble trying to conceive. I’m scared pregnancy is going to wreak havoc on my body. I’m scared of birth. I’m scared I won’t be able to keep up with kids once I have them. If I have them.

Most of all, I’m scared the pain is never going to go away. I’ll be thirty years old and living with the knowledge that I’m not even halfway done living and I’ve already exhausted all my options.

And when I look at that prospect, honestly? I want to die.

***

I meant this post to be about body dysmorphia. Fat. It ended up being something else.

I don’t know. I’ll be ok. But I’m struggling.

You kept me afloat financially for my first adult years in California, and you kept my husband and I out of debt for our first year and a half in Pennsylvania.

Dealing with you was always frustrating, but damned if I’m going to let anybody deliberately starve you to death.

I think people would do well to remember that what they pay in FICA goes into a pool of money that funds not only retirement benefits but also benefits for the blind and disabled. If Social Security were reconfigured to be mandatory individual IRA accounts rather than the rolling system it is now, the blind and disabled would be shit out of luck.

People would also do well to remember that they might become disabled any day.

Finally, people would do well to remember that in reality, almost no one has a cohesive nuclear family with money and bed space to spare for a person permanently unable to contribute financially. Very few people have a savings of more than a couple hundred dollars. Not every city has a homeless shelter. Not every person has good will with wealthy benefactors; not every person has friends in good places. Not every family is functional, or even intact. Not every country, state or county invests in a strong set of public welfare programs. I could go on.

The debate around Social Security always rests on the assumption that the SSA is simply a retirement fund. It is not so.

Without Social Security Disability Insurance and Supplemental Security Income and the Medicare benefits I still had to wait two years for, I would have to have remained living with my (mentally ill and emotionally abusive) mother, and my disabilities untreated. Between those two things, I can say with a fair amount of confidence that I would not be where I am today.

I would have killed myself.

Cheers.

This shit makes me blood boil.

This morning I read (rather, viewed) Lauredhel’s documenting of the bullshit uni discrepancies for the Olympic athletes. Remember, these are athletes; there are surely performance advantages to skin-tight Lycra vs. baggy poly or vice-versa depending on the sport, but why then are women always mandated the Lycra and covering as little skin as possible (yes, this is in the rules) and men sometimes skintight, sometimes baggy, but always covering a modest amount and always far more skin than their counterpart women’s unis?

On that note, I was wandering around our discount store today after a job interview, grabbing some band-aids and bathroom products and a few more Fuji apples (divine!). I meandered by the sport care section, looking to replace my late shower chair and see if there was any sort of wrap to keep a heat pad on my back. I noted the name of the manufacturer of the products available there, and came home to print out a few product pages to discuss with my physical therapist.

While browsing the site, I curiously clicked on the “ Life Care™ for Her” link. This is the page that comes up:

What is wrong with this picture?

Oh yeah. The sexy vixen with smoky eyes trying to seduce you to come…tighten her knee brace.

WTF?

You’ll notice the pictures on the packaging, of course, includes more pictures of hairless poreless fatless pigmentless sssssexy chick. And they helpfully spotlight them in the middle of the page!

Mmmmm, check out my soft, silky, supple, b……races.
Why don’t you come support me, baby?

Targeted Support for Today’s Active Women. “Active,” huh! Smirk, wink, amirite amirite

I included the full first screen of the page to give a context as to the site it’s on. This is sports medicine. It’s hot/cold gel packs and creams, and tapes and wraps and braces. By contrast, here’s another picture of a woman on the site:

She’s wearing skin-tight midriff-bearing clothes, but at least she’s wearing any at all — and she’s up and active and at least her awkward position is actually doing something.

And here’s another page for one of their product series (as opposed to just a category of products). Notice that all but one of the pictures have been converted to grayscale and digitally edited to look like an understated grey model.

I don’t see why the same approach couldn’t have been taken with the women’s series of products — which appear to be designed so as to be better marketed, not so as to be a better product for women’s particular needs. They say they are thinner and sleeker so as to be less conspicuous under clothing, an advantage that I see no reason to be confined to women. Surely men in business suits would benefit from a non-bulky ankle brace too?

The message this sends to viewers is, simply put, even when you are injured or sick, you must always be sexy. What it tells women is that they need to shave their entire leg before they put on that knee brace. And white women should preferably tan, without tan lines. WOC need not apply, of course. Nor fat women.

There is quite simply no time that we, as women, are permitted to escape from the exacting standards set for us to be on-the-ready for any male passersby. Not when we are sick, not when we are injured, not when we are active or participating in sport, not even when we are altogether disabled. We must always be aware of our appearance, not in terms of presentability, but in terms of sexual attractiveness to a hypothetical mainstream white heterosexual male.

Even when no one can see us at all.

Chew on that for awhile.

Extra credit: The store had a different women’s-series set of products: they were “for her” and their distinguishing characteristic was that they were sized larger for a “plus-size” body. Apparently only women get fat.

Does anyone have any experience or knowledge about TENS units? Particularly the portable sorts?

My physical therapist is recommending one, and it does seem to be doing some good, but I’d rather prefer to be informed before jumping feet-first into the fight for my insurance to buy one for me.

This is a total gimme. It’s one of the most helpful aids I have, and it’s also one of the most explicit medical devices, so to speak. I’ll get into the subtler stuff as time goes on.

So: my shower chair.

I have touched on the subject of showering in the past, in passing and in detail. Suffice to say it is extremely taxing for me. I usually aim for a shower every 2-3 days, which means I usually end up showering every 3-5 days when I’m in decent health. I try to time it so I shower once on the weekend, to be able to share the shower with my husband — he will help me when I ask him to, but really, I just enjoy sharing that time with him. It’s not really sexual, though I do consider it a form of intimacy. Usually I will also shower once mid-week just so that I don’t get uncomfortably stinky, greasy, etc.

I don’t always sit during my shower. And I almost never sit the whole time; if I need to sit the whole time, I probably shouldn’t be showering. But it is a huge help, especially when I am washing my body. That requires turning, reaching, bending, twisting, lifting, and balancing, all while pushing a soapy little puff around my body. It’s easier to reach my feet and not fall down when I’m sitting on a stool vs. leaning over standing on one leg. Shaving, too, is something I usually do sitting down, as the bending and twisting is too awkward and stressful for my lower back.

I also scrub certain parts of my feet and hand with a pumice stone to get rid of dead skin cells, because those spots (heel, bottom of my big toe, and around the cuticles on both fingers and toes) get very dry otherwise. This results in two things: feeding my bad habit of picking at my cuticles, and painful callouses on the feet. That’s too much force being exerted to also use up my energy standing up. This is actually the part of my shower that takes the longest, but it’s also best to do it during my shower, when my skin is softened from the warmth and moisture.

OTOH, I usually stand while I wash and condition my hair. Not enough water pressure to rinse it out when I’m sitting, and the less time I’m applying force with my arms lifted high, the better.

I actually don’t know what it is that makes a shower such an event for me. I can pick out some aspects: the heat (though I can’t tolerate extreme heat anymore), the humidity, the enclosed space? I find it hard to breathe in that setting; is my asthma the reason? I do know that actually doing anything while I’m standing is difficult for me, which is why I tend to avoid washing our dishes (unfortunately for mattw) and almost entirely why I didn’t last long at the cafe job. But it feels like that’s not all of it. I get so shaky after a shower, and weak, and shaky. And shaky. And I don’t do great after washing the dishes, but it’s usually not anything like that.

But you know, I don’t always get shaky and week after my showers anymore. And before I bought this chair, I did.

The reason I don’t just sit on the edge of the tub is: ew. OK, the real reason is that it’s still a serious balancing act. (And if it’s anywhere other than home: it might let a lot of water out, and also, ew.)

I got my chair from Target; it was the cheapest one I could find that looked safe and like it would fit our tub.  There are any number of sites that sell these things, and a quick hop on the Google bus should get you where you’re going. This one isn’t particularly portable — it folds down, yes, but it’s not like I was going to carry it on the Metro so I could have it at my hotel in DC. But it allows it to be stowed neatly in the bedroom closet, which means mattw doesn’t have to deal with it when he’s showering on his own, either.

I seriously took a good week to write this post. I feel pathetic. I’m going back to filing now.

Oh. P.S.: Sign up at Target’s website for their weekly ads before you order from them, and if they allow you to just sign in with your Amazon account, do it. I don’t know which of those two things is what did it, but when I ordered, I got a 10% discount.

On a whim, one year ago today, I entered this heady world of blogging. I was in want of an intellectual dumping grounds, figuring that even if no one was listening to me, I’d have my place to externalize and work through my cognitive mess — sparing those around me from my ever-running critical commentary — to improve my own understanding of my social environment and perhaps even aid others in understanding the world from my perspective.

525,600 minutes, two jobs, twenty pounds, a tripling of my daily pills to pop, one lumpy lefty, countless visits to various doctors’ offices, and three new diagnoses later, here I am. I guess, if you felt like a good stretch, you could say my life has been enriched. I would say, wanna trade?

Disability as a condition is not a negative thing. Much like my physical appearance, my body image in the realm of disability is a complicated thing. But I find it patronizing to hear ostensibly abled people try to paint over my struggles by calling it character building or pretending such experiences bestow a higher consciousness, an otherworldly wisdom to the experiencer, or other attempts to neutralize a person’s regret or frustration with hir life as a result of hir condition.

It’s one thing for one person with mental illness to say, “it makes my life interesting” or “life’s no fun if you’re not crazy” and so forth. Those comments acknowledge the complex effects a person’s disability has on their life, making things difficult in some areas, providing positive meaning in others. It’s a dark humor. “Character building,” on the other hand, is an attempt at erasure. Don’t make me uncomfortable.

I’m not quite sure how I got to that subject, but there you are. Welcome to my brain. My brain wants sleep, so it will bid adieu for now.

Thanks to Lauredhel for my first major link, to annaham for being my first blogfriend, cripchick and nezua for the encouragement, Melissa for a front page link, and Feministe for inviting me to guest-blog (I start next week), and the people I am sure I’m forgetting (see aforementioned brain). I appreciate all of that, more than I can say.

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.