His answer was that he simply hired the best writers, whether that led to any sort of fair representation from women or non-whites. What he didn’t realize, of course, was that his definition of ”best” probably excluded, intentionally or not, all but white males.

He added that he didn’t want to sit around and count quotas because he felt that was condescending. But it’s not just about parity; making sure his organization was more representative was about realizing there are varied points of view that his history as a white male might prevent him from immediately understanding. When you’re talking about writers good enough to get an assignment from Harper’s, there isn’t just one best. After a certain level of quality, distinctions from one writer to another become a matter of taste, and this particular editor was showing his bias toward white males. Pulling in other perspectives would enrich Harper’s voice.

[...] I’m not going to say that [The Hurt Locker's different emphases] was due to Bigelow’s special woman-sense or anything, because we don’t know why she was able to make it so good. That’s kind of the point. The excellence of the movie speaks to Dargis’s point and the problem with Harper’s at once. If we leave out half the population from movie-making, we’re leaving out half the perspectives that might be able to bring something new to the table. The major studios would be better off if they brought it, because I’d love to see more movies like The Hurt Locker.

The last point in particular makes a lot of sense to me: some people would assume that, well, when it comes to imagining new things and taking things from new perspectives, white men can do it too — that white men are capable of providing any perspective or creative direction that humanity could possibly provide — and therefore there is no need to necessarily seek out a diverse creative class, because there is nothing a Muslimah or gay Filipino could bring that a white male couldn’t, and it’s an insult to white men to imply that they do not hold the entire world in their mind’s hands.

But they don’t, because no human being is capable of tapping into the entire universe of perspectives available. We all see the world through unique, specialized lenses that were formed and shaped by our experiences as the person we are. The place we grew up in, the family that raised us, the way the world treated us, the distinct qualities of the culture we are part of, the choices we make as adults as far as the direction of our lives, our careers, our relationships, our hobbies and passions. All of these things change the shape of our particular lens in their own unique way, and we all have a unique combination of these things which forms our own unique perspective of the world.

But those lenses have limits, they necessarily have limits, and we do not always even know what those limits are. Those factors we share with others will create a lens shape quite similar to their own, and when we are surrounded by like people we might often begin to believe that our shared lens is not a matter of our shared experience, but rather a matter of universality.

This is what leads us to believe that there is nothing the white male cannot achieve, cannot bring to the creative table: his experience is shared by so many, and especially shared by so many in power, that he, and we, might begin to believe that it is not a particularly-shaped lens anymore, but rather no lens at all.  And when we believe that he has no lens at all, what benefit could there be to paying attention and inviting participation from people who do have differently-shaped lenses? No creative benefit, certainly, because there is no difference between what those different perspectives see and what the white male could see if he felt like trying. Because he can see all.

And so we wind up where we are: it is an insult to creativity itself to suggest that it is worthwhile to drink in a diversity of perspective, and it becomes not a matter of improving the depth and quality of creative offerings, but rather a matter of personal benefit to the creators.

And we can see where a white male might prickle when confronted with a person who appears to be suggesting that he does not deserve to sit on his side of the conference table, that someone else who can do no more than he could do has some greater worthiness of sitting where he does based on factors outside hir creative potential, and that he should actually willingly give up his seat to make room for hir. It becomes a personal affront, rather than a pressure to improve the greater craft. And, in fact, might become an affront to the quality and depth of his craft, to specifically invite participation from people who bring with them one perspective, but only one — while he brings all.

So he will invite only those different people whom he favors for personal benefit. And he will continue to scoff at the suggestion that diversity is wealth.

How it might be changed? I don’t know. But one place to start is to make everyone aware that they can only see the world through their own personal lens, and that their lens has borders, limits, boundaries. That no one can approach the world without a lens, and that every lens is malleable, not set, not infinite, but formed in the first place by one’s personal experiences.

It’s going to take some time.

I was born “The [Mom's Maiden Name] Girl.” My mother had not yet picked out a first name for me. She was living in a hole-in-the-wall shack in a poorer town in agricultural central California — it was where she ended up after my father kicked her out upon discovering her pregnancy. Get an abortion or hit the road, he said. I knew this as a child, but it wasn’t until I grew older that my mother also informed me that he was threatening to beat her, to punch and stomp on her stomach to forcibly terminate the pregnancy. He tried to send her out with no belongings in a scrap car — which was to get her from her then-home on the northern border of Oregon to her adult sons’ home in central California. That’s over 900 miles. She was 43 years old and not in the best of health. My oldest brother — something of a giant — had to gather some friends to physically threaten my father for him to make sure that she was able to make the trip safely.

I’ve never had a moment’s contact with him. My mother claims that when I was around six years old, he called her, having “dropped by” and wanted to take me out for some ice cream with his new girlfriend (with whom he had been involved during the short months my mother was married to him). Fearing for my safe return, she refused. And never heard from him again.

During my first months, my adult sister lived with us — she has told me stories of having to brush cockroaches off of me while I slept. And it wouldn’t be until I entered adolescence that my mother and I settled down in a permanent home: before that, there was not one residence I was able to stay for more than a single year’s time; we hopped around looking for the lowest rents, and spent time living in spare rooms in each of my adult brothers’ homes (three times with one, once with the other).

When I was five years old, my mother married a long-time family friend. When she did so, he legally adopted me, claiming to be my father and being added to my birth certificate as such — whether my mother just went along with this or actively sought it for reasons of future security, I don’t know. Regardless, my name at the time changed from [Mom's Maiden Name] to [This Man's Name].

A little less than a year later, after struggling with him over finances — he wanted her to continue working to support his retirement, with no support for either her nor I — she divorced him. And there, a problem cropped up: in order to get my name changed back to my birth name, she would have to go to court to prove that he was not, in fact, my biological father, and have him removed from my birth certificate. As a newly single mother, she did not have the resources to take on that task. So, even after the divorce was finalized, I remained [This Man's Name] — and she kept that name as well in the interests of having the same name as her daughter.

And that name remained mine for the rest of my childhood, adolescence and early adult life. I hated it. I hated the sound of it, I hated the man it came from, I hated the way he had treated her, I hated the way we were stuck carrying his family name despite having no ties to this family whatsoever.

Ever since I can remember, I have been very eager to get rid of that name.

And ever since I remember, I have been wholly uninterested in weddings and traditional family life. I had no interest in boys or girls as a teenager. I never dreamed about “my day,” about dresses and flowers and music, about honeymoons and housewifery.

Part of that, especially as I grew older, was that I had a distinct sense of my undesirability. I wasn’t interested in anyone else because I thought no one else would be interested in me. As I grew more aware of my health and struggled with my increasing limitations, I never even entertained the idea that anyone could ever be interested in me — not to kiss me, not to hold my hand while we walked through the mall, not to cuddle, not to call me “girlfriend” or “go steady,” not to live with me, not to propose to me and certainly not to legally commit to be stuck with me for the rest of their life. Who the hell would want that? I was a burden; my health was growing worse; they would have to help take care of me, and I wouldn’t be able to contribute to the household enough to count as an equal. So obviously, I wasn’t on the market. It never even got as far as whether or not I wanted to be: it was simply a matter-of-fact acknowledgement of a reality that would never change, and thus there was no point wasting energy trying to change it.

All this is to say that I wasn’t dreaming of changing my name as part and parcel of the supposedly-universal little girl’s dreams of wearing white and being pampered and fawned over and having pretty pictures taken in rolling green fields. I never had those dreams. I just really fucking hated that name.

So before changing my name as part of an adult relationship ever became a possibility, I had three names to contend with. My father’s name (which I’ve never officially carried), my mother’s maiden name, and that other man’s name.

And not a single one of them was a name I wanted any part of.

My father’s name? Sounded pretty cool phonetically, but it was the name of a man who threatened to beat my mother, cheated on her pretty openly during their short relationship, had some pretty serious class bigotry going on, and was by all accounts — including those of his other children, the half-siblings who wanted nothing to do with me — a complete asshole. Yes: there’s a name I want to adopt!

My siblings (on my mother’s side) actually shared a completely different name — they were from a different father — my mother’s severely abusive first husband who thankfully died in a motorcycle crash, and every single member of my family is convinced it was for the better.

And then there’s my mother’s maiden name. The name shared by my aunt and uncle and family up in Oregon, the name I was born with, the name I went by for my first five years of life.

It doesn’t matter. I don’t fucking want it.

I want nothing to do with any of those names. I grew up in a severely emotionally controlling and manipulative family and experienced abuse to the point that I am just being introduced to the idea that I may have PTSD by my counselor. (I protested, and she said “OK, well, we don’t have to put a name to it, but…”) I have pretty bad dissociative issues I am only just beginning to explore; I escaped with moderate to severe anxiety disorder and panic attacks that don’t qualify as panic disorder only because instead of being random, they are triggered by contact with my family. I fit every other qualification.

I was stuck at home with a mother who afforded me no space to develop an individual self, unable to make it on my own away from her because of my disability. I couldn’t work, couldn’t afford rent, couldn’t live independently. I pushed myself to return to college earlier than I should have — after I dropped out the first time and spent months housebound — cutting short my recovery time, just to get away from her. I lived for a year on Social Security disability (after I was approved), $7500 in needs-based college grants and several thousand more in student loans before everything started to run out — money, my ability to continue school and maintain grades high enough in a busy enough schedule to qualify for further student aid — and I couldn’t stay out on my own anymore.

And then I spent a very painful and traumatic six months stuck in close contact with an abusive mother who was keenly aware that she was losing her grip on me and escalated the abuse accordingly.

And then? I was able to move 2500 miles the hell away from all that shit to live with… a man. Whom I married. And whose name I took.

I was able to move to a place I wanted to move to, to live with this amazing person I wanted to live with, who loved me dearly, who was respectful and affectionate and treated me like a whole person, a person of my own whom he just so happened to be enamored with, whose family was warm and welcoming and accepting and easy to be around…

I was able to choose where I wanted to be, who I wanted to be there with, who I wanted to be, what sort of life I wanted to live…

I chose the family I wanted to be a part of. I built the life I wanted to live. It’s a life I just so happen to love deeply, a life that has given me so much more opportunity than I ever had on the other side of this country, thanks to the person I chose to build it with.

That person? Is a man.

I took his name.

I don’t think that’s a capitulation to patriarchy. I don’t think that’s a compromise of my feminism. I think that is a demonstration of my feminism.

I have a name now. It is mine.

both are silent. the sky is darkly overcast and the climate system whirrs loudly.

after several moments, she declares: “i wish…”

pause.

“i wish i could use the system.”

i look up.

at the moment, our intranet is down. i am assuming she means “i wish i could do my work.” but she continues.

“i wish i could get something. everybody seems to get something out of it. when we’re just trying to get by on our own, you know. they get something for free. i wish i could get something.”

and now i know what she’s talking about. i take a breath and try to maintain a conversational tone.

“i actually grew up on welfare. and it’s pretty hard. there’s so much you have to keep up with. it’s much better when you can make it on your own and don’t need that help.”

pause.

“when i was little, we actually got our food from food banks. you know, stale cheese and cans of evaporated milk, that was all we had. it was more trouble. i like it much better when i can do things for myself and don’t have to rely on that stuff. struggling with all that. it’s not easy at all.”

silence.

her copies are finished and she returns to her desk. i go back to my applications.

***

edited to add: if you want more on the things poor people are put through to get a few crumbs worth of help, read this old post from kactus, a poor single disabled mother whose presence on the internet I miss very much. um… in fact (looking at my comment there), it looks like it was but a few days before I started this blog!

Part I: The Personal

Note: I’m going somewhere with this. Please keep your mind open as you read, because I will be coming back in Part II with a concept that may seem to conflict with your initial reading of Part I. Thanks.

Understanding my background is essential to understanding my understanding of these things. And so we go.

My brothers and sister, between them, share two diagnoses of bipolar disorder, one of schizophrenia, two of those with psychosis, and all three have severe depression and/or generalized anxiety disorder. That is only what has been diagnosed by mental health professionals — D* was only diagnosed by way of being taken to prison and has not seen a doctor otherwise in decades.

My mother never saw a mental health professional and never will, but she shares most of the symptoms my siblings display, and my own mental health professionals have agreed with me that if there is a diagnosis to give her (with all requisite caveats), it would be borderline personality disorder.

1.

My brother D* had the worst situation of the family. He was the first to go to jail: when he was taken to court for some sort of licensing issue, he refused to give his name. Wouldn’t speak. And so they put him in jail. And he stayed there for eight months before relenting so that he could just go home.

How long would you stay in jail for a principle?

My family was religious, each member to varying degrees — but their idea of religiosity was, to say the least, a somewhat unique form of the faith practiced by their fellow churchgoers. D* was probably the least religious of any of us. But he still had his ideas.

According to him, the “self” is a thing, not a person. When you refer to your self, you are not referring to you the person, but a thing that the government created so that they could have control over you. Because in Genesis, God gave man dominion over all things of the earth, but not over man. So the government devised the “self” so that they could claim control over people.

According to him, the reason we have a “driver license” instead of a “drivers license” is because in actuality there is only one person, and we are all franchised out from that person, which the government created sometime in the nineteenth century and none of us has been a person ever since. This is called “novation.”

Also, we are all “resident aliens,” because the state owns all land, meaning we are not residents but aliens on the very land we reside on.

Also, when you write your name in all capital letters, that is representative of the “self” that the government owns. Which is why names are printed in all-capitals on our birth certificates, so that the government has official control over you. So never, ever print your name in all capitals, because that means you are officially giving your “self” over to the government, and this may even be the Mark of the Beast.

It was that latter that probably got him in trouble with the court.

These were regular topics of conversation at family gatherings. I remember the Thanksgiving dinner when he gave me my first lecture on novation. I was seven or eight years old, I think. He grabbed a piece of copy paper and drew a diagram for me. I don’t know what else to say but that the diagram showed the inner workings of a mind that works in a completely different way. It wasn’t nonsense. It had logic to it, but it was its own logic — not the logic most of you are used to using.

These ideas were not a hobby for D*; they were his world view, they were primary, his truest beliefs, and he lived his life according to them.

2.

My oldest brother, G*, was born in the late 1950s, when my mother was sixteen. She was publicly kicked out of her church and her parents became hostile, leaving her with one person to rely on — her boyfriend, the father of her child. He became my mother’s first husband. Thus began her adult life. D* would come along a few years later, then my sister, whom I called Sissie.

Her husband was extremely abusive. He had very sketchy friends and apparently some involvement in certain anti-government movements in Canada. He would drug my mother and invite his friends over. He beat her to near-death a couple of times — then went into the children’s rooms, where they were aware something bad was going wrong, and calmly informed them that if they tried to help their mother, he would kill them.

My brothers have related to me the time that D* chased G* down in the back yard with a butcher’s knife — angrily — with full intent to kill him — he had feelings of inferiority under his brother. Their father broke it up when D* was on top of G*, gave them both a good beating and a good threat or two. This is how my siblings grew up.

When my brothers were in their teenage years, he died in a motorcycle crash. My sister was a bit younger, and she has recalled crying in class when the news was brought to her. But all three of them agree now that they’re glad it happened. It freed the family.

I would come along much later, by a different father, who gave my mother the choice of getting an abortion or hitting the road. She hit the road, had me at age 43, and went on to raise me alone.

3.

I grew up in a toxic family dynamic. That may be the most respectful way to describe it.

I could write a novel’s worth about my relationship with my mother. It was one of extreme emotional dependence — both ways when I was a young child — only one way when I grew older and tried to stake out small bits of independence. The more independent I became, the more intense her emotional stronghold on me, the more insidious her tactics to keep me in the reins.

My relationship with my mother was quite happy until, maybe, age twelve or so. She was sweet and caring and supportive. She encouraged me in my talents, gave me plenty of hugs and kisses, shared laughter with me… I could relate with her, I could talk with her, I could play and have fun with her.

But when I approached that age — when I began to explore my own identity, when I pulled away from her a mere inch — suddenly I felt the grip tighten — and that hug became a hold. And there was less playing, less fun. Suddenly — in very subtle ways — she began to turn on me.

4.

There may have been a time when my relationship with my mother was one of friends. But my relationship with my siblings has always been one of enemies.

My siblings were all a generation older than I, married, with children. G* and D* lived with their respective families in the two towns I grew up in, in the Central Valley. My sister lived on the northern border of Oregon, near Portland — where my mother was living when I was conceived. We didn’t get to see her family very often; once a year when we were lucky.

I was always the outsider. My brothers and sister grew up together. In a totally different world. They were decades older. Different life stages. They had come a long way, and I was just arriving on the scene.

A toxic dynamic developed, where I was the young, stupid, spoiled, care-free little thing that was getting off too easy in life. And this threatened them. They went through hell as children, but here they were, struggling, but making a life for themselves. And I was their little sister. But my life was totally divorced from theirs, a totally different realm. One they feared was rising above them.

So they had to tear me down.

And that’s what I experienced growing up. As young as I can remember. I would be trying to disappear into the couch at G*’s house as my brothers and mother commiserated about how totally wrong I was, lectured me on how things really were, agreed that I was just too young and I would come to think of things their way when I got older.

Or they would tease me about my body.

Or they would respond to a positive development in my life — an award or good grade at school, for example — by admonishing me in all the ways I was failing now or could fail in the future.

Or I would be subject to general teasing — the kind that probably goes on in most families — but with a sharp edge, a hostility to it. A tone that made me perpetually uneasy, self-conscious, doubtful and critical of myself.

Whatever it was, ultimately, there was something wrong with me.

These were my authority figures. They weren’t just casually distrusting me. They were engaging in a coordinated campaign to make sure I understood that my own thoughts, opinions, and experiences didn’t matter, weren’t trustworthy, weren’t reasonable; that I would eventually become just like them, regardless what I thought or felt right then; that I was ultimately unimportant and unlovable, that I was a nobody, that I would go nowhere in life.

They loved me. I know they did. But they also hated me. There is simply no way around it. I was devastated when I first really came to terms with that. My own brothers and sister hated me.

And all the while, they were telling me: This is love. And this is the only love you’re ever going to get.

What do you think that’s going to do to a child?

5.

My mother’s social life followed a regular, recognizable pattern.

She would make some friends. At church, doing Avon, whatever. Then over the next couple years (sometimes months), she would grow gradually closer to them — just like any ol’ person does.

But then she would hit a certain point, when those friends were approaching a closeness, when they were moving from casual friends to intimate friends.

And once they hit that point, her attitudes spun a complete 180. She began to regard them with suspicion. She would identify all these little ways, all of a sudden, that the very things she appreciated before, were signs of something sinister. If she missed a few church services and someone checked in to see how she was doing — it wasn’t a caring friend trying to help out someone sie cared about — it was a conspiracy of some sort; they were trying to dig information, to squeeze their way in, to find some way to ruin her life. If she misplaced some item at home, those people must have broken in while she was gone and taken it — anything from a garage key to a dish to a piece of scrap paper.

She became hostile. She became… resentful. She thought that these people were getting together to make her life difficult. The conspiracy would begin to grow, become more complicated by the day.

She’d begin to retreat. Stop going places. Avoid people as much as possible. No sense of trust anymore. Everyone is a potential conspirator. Everyone is an enemy.

And then — the final stage — she would move. Claim to have been “run out of town.” She would find somewhere new, where she wasn’t known — and start over.

And the whole process would begin again.

6.

It was five or six years after D*’s ordeal in prison that G* began to take an interest in the same stuff. He started reading, and reading, and reading. And the more he read, the more passionate he became about it all.

At the time, my brothers were getting into this thing about “copyrighting” your name. I think they saw it as a way to take back possession of that “self” that the government owns. I would argue to no avail.

They decided to “copyright” their names. They each placed a classified ad in the local paper declaring their rights to their names. Declaring that this name now belonged to them, and any violation of their copyright would be punishable by some amount of money. They did some more reading, and decided each violation was worth $50,000.

A little while later, G*’s name ran in the local paper for some innocuous reason I can’t remember. Just a mention, like as a parent in a graduation or engagement announcement, or some sort of meaningless news brief.

G*’s idea of rectifying the situation meant going down to the courthouse and filing a form declaring that the District Attorney was in debt to him, to the tune of a quarter million dollars, for each of five mentions of his name in the newspaper, and placed a lien on her property.

This went unnoticed for some time, until the DA tried to sell her house and found this random man had placed a lien on the property. So she took him to court.

The court case was long and involved, because a buddy of his had tried the same thing and was being tried with him. There was investigation done into the groups and writings G* and his buddy were involved in. Second court systems that claimed to have authority over the government. The buddy was trying to sell cars without registrations because that was giving yourself over to the government. They accused him of being a terrorist. The prosecutor, in his closing statement, actually began to cry loudly in front of the jury, sniffed, then apologized, saying his son was in Fallujah right now and it’s because of these people (my brother and his buddy) that people like my son are dying for their country.

He was found guilty of all charges, including a felony conspiracy charge, and sentenced to fifteen days in prison and five years probation. His buddy got a couple years in prison.

Once he got out of prison, G* decided to go to a doctor. This is when he was referred to a few specialists, and he was diagnosed with schizophrenia, bipolar disorder, GAD and major depression. He was given a couple medications, one for his fibromyalgia pain and one for his mental condition. He tried them. But he came off them soon after — maybe a couple weeks.

That is the only time either of my brothers tried to seek help for their conditions. Didn’t last long – G* was soon back to his old self — distrustful of the doctors, very resistant to treatment. He is the one, after all, who dropped a very heavy metal object on his toe, breaking it, splitting the toenail so bad it fell right off, and getting a nasty infection to go with it — and absolutely refused to go to the hospital or even a walk-in doctor.

Then again, D* is the one who passed several kidney stones without ever seeing a doctor. He looked on the internet and found several “alternative” health sites that told him which foods to eat to “flush it out.” He followed the instructions, bearing a few months of extreme pain before finally passing them. Would not see a doctor.

Never in my lifetime has he willingly seen a medical professional. He is by far the most paranoid and most distrustful of authority in my family — why would he ever trust a doctor? They might be passing along information to — well, anyone. Either way, they are a threat far more than a help, so it would be downright dangerous for him to ever step in a medical office.

Part II: The Political

Last week’s conversation in “Emails from my mother” saw many people with similar experiences. Many people who have family members with mental illness, and many people who experienced abuse from family members, and many who have experienced both.

There were, however, several disappointing turns the conversation took. And we really need to address those.

Mental illness is still widely misunderstood in our society. In popular conception, mental illness marks a person as dangerous, incommunicable, strange and weird, living in their own world, not a whole person, not the same kind of person. According to this conception, a mentally ill person has no control over their own thoughts. “The illness” controls them. Any unsavory actions are attributed to “the illness.”

There is also popular conception (which somewhat contradicts the above, but both are still commonly held together without second thought), that says that mental illness is a character flaw: that a person need only buck up, think positive, get some sun, stop being so negative, exercise, etc. and it will all just go away. The subtler, more “enlightened” form of this conception says that a mentally ill person just needs to attend therapy and get the right medication, and it will all just go away. As if it’s that easy.

As a society, we marginalize the mentally ill eagerly, without compunction. They’re scary, they’re dangerous, they’re just not like us, they need to be controlled, for their good and ours, because they are a threat to orderly society.

Except that we aren’t. People who are mentally ill are no more likely to commit violence than people who aren’t. The only factor which increased the risk of violence is substance abuse — a factor which also increases risk of violence in the non-mentally ill. And much stronger predictors of violence include being male, young, low income, recently unemployed and recently divorced or separated. For what stigma they still may face, do we assign anywhere near the same amount of “danger” to divorcees and the unemployed as we do to the mentally ill? And yet….

And yet: people with mental illness are twice as likely to be the victims of violence. Does anyone even pretend to pay attention to that?

And why might that be? Well, when people associate mentall illness with violence, they are

significantly more likely to report attitudes related to fear and dangerousness, to endorse services that coerced persons into treatment and treated them in segregated areas, to avoid persons with mental illness in social situations, and to be reluctant to help persons with mental illness.

Huh. Imagine that. People who are told that already-marginalized people are a danger to them and all that they hold dear will begin to have ideas that those marginalized folk need to be controlled, avoided, medicated, segregated…

And this attitude, this automatic assumption that mental illness makes a person violent and dangerous, is so pervasive across our society, and so deeply-held — and yet so wrong, so not true.

Don’t you think, perhaps, then, many of our other assumptions about mental illness — no matter how deeply-held, how widely-agreed-upon — might also be wrong?…

Like that they lack empathy or reasoning ability?

Or… that abuse and mental illness can be safely conflated?

I’m not even going to bother linking specific comments for that one, because there were so many, and I participated in it too. I made the same mistake. I had suffered abuse from someone with a mental illness, and I failed to realize that there were two things going on there, two different things, and that one is not an inevitable result of the other.

Try reading my stories above again. Do you see the distinction? I told stories of growing up as a family member of people with mental illness, and I told stories of growing up abused. Did you see the two different things going on when you first read them? Or did you think I was talking about the same thing the whole time?

I was called out on my next post for writing as though the mentally ill, and people with disabilities in general, were a separate group, off there, somewhere away from all of “us.”

As though people with mental health conditions are not scattered throughout the entire population. As though my best friends don’t have these conditions. As though I don’t have them! And I do!… And I even made a specific plea in that very post for people with conditions like mine to stop thinking of themselves as separate from the people the public thinks of when they hear the words “mentally ill”!

We are all subject to these attitudes, and they reach deep into the core of our world views. It takes careful, concerted effort to undo the damage done by bias, hostility and ignorance. And even with that effort, oftentimes these attitudes remain — they are woven so deeply we don’t even know that they’re there. Even when we’re looking for them.

So we need to keep a sharp eye.

One very popular idea about mental illness, which was shown throughout the “Emails” thread, is that one can separate out “the illness” from “the person” — and that any unsavory actions or behaviors can be attributed to “the illness.” That makes it OK, because it’s not the actual person inside making those decisions to act in those ways, but some vague, faceless, soulless thing that infects them.

This, of course, is a tactic to remove agency from the mentally ill person. A family member may latch onto this idea as a form of comfort, a way to identify with “the real person” inside their loved one’s body, which is separate from “the illness” which is what did things that harmed them.

But this idea exists for a purpose, and its purpose is not comfort to those of us who struggle with our families. Its purpose is to aid control of the mentally ill population. Because when their agency is removed, it makes it much easier to impose things on them, to coerce them into things, which we would never tolerate on the healthy population.

When agency is removed from a person, it makes us less likely to identify with that person as a fellow human being. We are less likely to consider how something may affect them as a human being, with a family and a community and a life of their own, which might be affected in so many ways by this restriction or that proposal.

When agency is removed, we feel much safer making decisions for someone else.

But persons with mental illness still have agency. They are whole persons, not diminished by their difference. Their illness is not simply a disruptive module overlaid on a “normal” person’s brain. It is their brain. It simply works in a way that a normal person’s brain doesn’t.

A circle is not a square with the corners cut off. It’s an entirely different shape.

And this difference is not inherently detrimental. I know a lot of people really had trouble with this concept in the “Language” thread. And it is such an alien concept to most of the world that I know people will continue to have trouble with it. But the fact remains: Difference is not inherently bad. A different body, a different brain (which, really, is a part of the body) — these things are not inherently bad just because they do not conform to the established social norm.

Please make note, there, of the key word “inherently.” Because a particular difference in body or mind might make that person’s life difficult in certain ways. Many of these are attributable not to the person and their difference itself, but to the fact that society fails to prepare itself for this difference. Many, however, are not. Some things are just shitty to experience. As I said, I have a chronic pain condition. Pain is, to say the least, unpleasant. There just isn’t any getting past that. But, as I said in the “Emails” thread,

There may still be issues with this condition that make life genuinely hard, that cause pain and hurt to that person, and we must acknowledge that…. [But] the pain and hurt is not the whole story. A thing can be both good and bad, benefit and harm at the same time. “Normalness” is such a thing, surely, as well!

Mental illness undoubtedly has negative effect on many people who live with it. Right now it is very hard to separate out how much of that is due to the illness and how much of that is because we restrict access to understanding and affirmative health care and equal access to society to such a point that almost everyone with mental illness is going to go through some shitty stuff because of it, even if their difference from the norm is relatively slight, and the effect on their life relatively light.

The focus in making their life easier, then, should not be in training the illness out of the person to make them more like “normal.” It should be identifying ways that life is hard for that person, and figuring out how to make it not-hard. That means identifying the true cause of the problem, rather than always assuming the cause is the person’s failure to conform to “normal.”

The true cause might be that the person’s brain regulates its chemicals in a way that makes life hard on the person, and so we try to modify things to bring the brain closer to a place the person will be happy with. This is a very different thing than assuming the cause is the brain regulating chemicals in a not-”normal” way, and therefore the solution is to force the brain to regulate things the “normal” way.

Then again, the true cause might be that the person doesn’t have prescription coverage, that they have trouble finding employment and therefore can’t afford the medicine they need, that there isn’t any support for living independently in their community, that people have weird ideas about them and treat them differently in social situations in such a way as to make their life very difficult.

All of these situations have different solutions, and they aren’t “make the person more like normal or else keep them away from the rest of us by whatever means possible.” Which is, unfortunately, the default solution given how we approach mental illness right now.

And this solution is only possible given that we assume things like “the illness is separable from the person.”

The thing is, many of us with mental illness would beg to differ. Our conditions are not a separate animal; they are not a “disruptive module overlaid on a normal brain;” they are us and we are them. That does not mean that one particular condition must be the single most defining thing in our lives — but it does mean that it is, however large or small, simply one aspect of our selves, one of the many things that make us, each individual person, who we are.

abbyjean put it particularly well in a private email (quoted with permission):

so i’ve been mulling about [the practice of] drawing a distinction between “things a person does of their own agency” and “things a person does because of their illness.” [...]

in my mind, that’s not a meaningful distinction, because the idea of “things i do of my own agency without influence from my illness” is a null set. i cannot separate myself or my thoughts or my motivation from my illness. the illness is so much a part of me, so much a part of my brain, that the idea of me without the illness just doesn’t make sense. imagining how i might think about or react to specific facts and situations had i never become ill, never been diagnosed, never gone through treatment, never relapsed, never been suicidal, etc, is so remote and hypothetical as to be meaningless. how might i react to a situation had i been born and raised in canada by moose hunters? i don’t know. it’s equally remote from my life and experiences, and equally irrelevant to my actual actions and thoughts and reactions.

A circle is not a square with the corners cut off. It is an entirely different shape. And both the shapes are of equal value.

Neither the circle nor the square is any better or worse, more valuable or less valuable, more whole or less whole than the other. They are both whole, they are both legitimate, they are both worthy, they both are. They just are, they are what they are, and you cannot define one in terms of the other.

This, this is what we don’t get in our discussion of any physical or mental difference, is that we cannot define that difference in terms of the “normal” default! The fact that most of the world, and even most social justice activism communities don’t realize the inherent problem with doing this, is indicative of exactly how much we have to break down here — more than I, just one person in all her imperfections, can try to encompass in one blog post.

Part III: Where the personal gets political

There was a discussion, earlier this year sometime, on Feministe about the right of people with mental illness to refuse treatment. I couldn’t read the whole thing, it was so triggering for me. And I have no desire to search out the specific post and conversation and relive how awful that was.

But I will say this, as a child who grew up in a family that was never un-affected by mental illness, and as a child who grew up under abuse. A child who is still trying to sort out everything that means to her, and will be for the rest of her life.

As a child who watched her family start and struggle, who watched her brothers go through very personal court cases, prison and probation because they had mental illness and their world did not reconcile with society’s world. As a child who watched her brother and sister seek treatment stopping and startingly, watched how that treatment affected them. As a child who observed the differing conditions of her family members throughout periods of differing amounts of support and differing amounts of (pressure/trial/tribulation). As a child who suffered worse abuse during those periods of lesser support and greater (pressure).

I would never, ever force any of my loved ones to submit to treatment they were not willing to take.

It is not a mentally ill person’s responsibility to force hirself into a square box sie does not fit in, so that the rest of the square shapes won’t be unduly affected by hir difference.

It is never a mentally ill person’s responsibility to submit to treatment they do not want to undergo because otherwise they would be a danger to somebody else.

Did you read what I wrote up there? Mentally ill persons are no likelier to perpetrate violence than mentally “healthy” persons, and in fact are twice as likely to be the victims of violence.

The only time the rate of violence rises is — surprise, surprise — when substance abuse is present.

Substance abuse is what my family turned to when the institutions that were supposed to be supporting them were instead working against them.

Substance abuse is what my family turned to when the rest of the world was treating them with disdain for being different.

Substance abuse is what my family turned to when they had no other options left, because society took them all away.

When people with mental illness are supported, when there is an affirmative environment where they can seek help for the problems they face participating in society and there are ways to address those problems in a way that respects their wholeness and humanity and agency — when the rest of the world is willing to be there with a supportive hand when they reach for one, not bearing down an iron fist against their wishes –

– then — guess what — mental illness doesn’t have to be a Big Scary Deal.

The term disability is not a static one but is the result of a person–environment interaction. The less supportive the physical and social environment, the greater the amount of disability. (source)

I know, it’s a radical idea:

Disability isn’t the result of individual defects, deviations from the able-bodied norm. Disability is the result of a society that fails to accommodate these differences.

What if we saw these differences as variation, not deviation? After all, we fully expect our children to be born with any number of different eye colors. Why is it any less when it comes to physical and mental abilities?

Can you shape a world in your mind where there is no norm? What does it look like? How does it differ from the world you live in today? What do you expect of people as a whole in order to support those currently disadvantaged?

The more I think, the more confused I become. It seems impossible to structure society so that everyone is brought to a similar level of ability across the board. But it does seem possible to structure society so that those fully-abled work to make up for those straightforwardly lacking, and everyone works with each other in full expectation of a wide range of ability across the populace, and all of this is seen not as hassling and burdensome, noble and heroic when someone takes it on—but as mundane, everyday, simply expected, no different from separating out your recyclables or driving on the right side of the road: something that everybody does, because it isn’t that hard to do, and it benefits yourself as well as those around you, so it’s stupid and even outright reprehensible not to.

That is the world I want to live in.

Instead, we have sober, reasonable discussions about whether or not mentally ill people are allowed to own their own minds and bodies. We have sober, reasonable discussions about whether their Obvious Danger To The Rest Of Us Important People is too great to bother respecting their personhood and bodily autonomy.

We have removed their agency, and thus feel comfortable making decisions for them.

When instead, maybe what we could do is — I don’t know, recognize the diversity in neural makeup? Recognize that people have different conceptions of The World and How It Works, have different approaches to dealing with that world they conceive? And that their approach isn’t inherently worse just because it ends up conflicting with the majority view — that maybe that conflict isn’t a sign of their difference having to be bad or wrong?

And let people have their damn differences, and when those conflicts come up, manage them. In a way that respects yes, the person is different from the norm. But guess what? The norm is different from them. The fact that there IS a difference does not bestow upon the different parties any particular worth or value. It just is. It just is.

Around the corner, about a quarter mile down the street, there is a small plot of land across from the rows of public housing, next to the community center. It was just untended grass until several months ago, in the springtime, when small squares were outlined with wooden planks, and the ground inside filled with soil. Then the shed was built, and the fence was put up.

Welcome to the neighborhood garden.

Community gardens are a great way to make use of space — to grow your own vegetables, herbs and so forth — to feed your family, save some money — and to develop a connection with the lad you live on — to have a hand in creation, nature, sustenance.

I was across from the fields, growing up, but in a different way. Most of my elementary classmates were children of undocumented field workers. The food that makes it onto your plate by way of your local supermarket has a good chance of being tended and harvested by these families.

They were not picking grapes and lemons and walnuts for pleasure, for self-realization. They were not feeding their families with this food. Their work was for the rest of the world.

They were connected with the earth, for sure. But it was not quite the same connection as that developed by participants in community gardens.

Many of these gardens serve underprivileged, disadvantaged communities — as this one — who are struggling to keep their families well fed and provided for. But it strikes me every time I sit to think about it: these two different ways of relating to nature are both borne of hardship, of poverty. They are connections forged by the reality of subsistence. They operate in different ways, with different results, but they grow from the same root.

I smile whenever I pass this garden. It is thriving, providing nutrition for poor families and a bright site of beauty in the middle of a run-down area.

But I wonder whether we could ever come up with a more holistic way of dealing with these issues. One which does not leave some families chained to the earth in the reality of capitalistic agriculture, and others disconnected from it in the reality of modernity and urbanism.

I’ll organize this, and organize that, and it will help me keep my life together for a time — organizing my closet or my deskspace or the living room — but as soon as a stressful time comes, and they come with regularity, the organization goes out the window — I throw my clothes on the floor and never pick them up, food kept on my desk with nail polish and sewing thread and sticky notes — it’s always the concept of, do what is necessary now and put everything in place later, when you’ve returned to “normal” energy state and can handle it.

But life seems to move at a faster pace than my body can keep up with. Maybe could keep up if I had a normal amount of energy, then I’d have the space and drive to get that make-up work done regularly, if I still weren’t able to just maintain everything as I went along (that being the idealized perfect state to which we aspire, right?). Maybe if I had the energy that I have when I’m at my best — but all the time — things would be great. And when I’m at my best energy level, I feel like I could continue things like that, if only I did this and changed that and kept things this way. And I try those things as they come to me, I am constantly reorganizing my entire life, never stop fine-tuning, trying to make things more efficient. But it’s never enough, I just don’t have enough in me to keep up with it all.

So maybe we get the junk off the floor and vacuum and swiffer everything, and tidy up around the edges of things, but there’s still that mess within those edges, still always something just sitting in a jumbled pile that I’m supposed to get to later. No matter how well I am — and even with an able-bodied husband doing more than his share of the work — we never get it all.

I have trouble thinking when I can see clutter. What it is about it, I don’t know, surely some gender considerations there, my insecurity about my disability always looming, and my personal idiosyncracies. But when there is visual clutter, my brain locks up and it is so much harder to process very basic things. And if only it were as easy as getting up and taking care of the clutter, then the energy I would be using on thought processing goes to the physical labor of cleaning, and I’m back to blank square one anyway, and a day later the clutter is back again.

And that’s the cycle I find myself in.

One day, a couple months ago, I sat in this chair trying to comprehend what I was reading, with a mess on the floor in my peripheral vision, and I spun around and thought to myself, why can’t this be beautiful?

This mess, this disorder, everything that comes with a life well-lived? The clothing on the floor, the half-filled mug of tea, the unmade bed, the shoes in the entryway, papers scattered about? Why do I feel like it weighs me down? Why can’t it be like the wrinkles and mottled skin and greying hair acquired with age: a reminder of everything you’ve done to earn them, a window into the life you’ve lived to get them?

Why can’t it be an indicator of richness? Why can’t it be something positive?

That one moment, I felt it deep inside. And it hasn’t come back. I just can’t look around and not feel weighed down by everything being so disordered, feel it reflects poorly on me, look at it and see nothing more than “something I should be doing but can’t do.” Something that is my responsibility, but I haven’t the capability. That is what pulls at me when I look at my mess, my beautiful mess. All I can see is everything I can’t do, while simultaneously feeling, in the back of my head, that I can do it but choose not to and that I am just of poor character, lazy, unmotivated, irresponsible, inconsiderate, slothful and selfish…

Maybe my physical mess, then, is a manifestation of my mental mess.

I just want to know. Why can’t I be beautiful too? If this is all I can do? Why do I feel lesser than the middle class folks who have these lovely tidy homes, not perfect and still full of personality, but tidy? They get to be beautiful, they get to be responsible and considerate. Why can’t I be too, if this is all I can do?

What will it take for me to look at that mess again, and see something grand? Will I ever see it again?

Why it’s important to make a concerted effort to promote historically-un(der)represented classes. You can’t flick a switch and have equality instantly turn on. Even if discrimination ceased to exist instantly, it would still take time to catch up — today’s chemistry-minded three-year-old girls aren’t going to reach the upper echelons of the field for at least another few decades yet. Of course, prejudice doesn’t instantly disappear simply because the law forbids certain manifestations of it in certain settings. So we reach a point where we’re looking to fill President Obama’s cabinet, but the levels from which such people would be pulled are still disproportionately dominant-class folk. This is where it does become worthwhile to pick Ms. Smith over Mr. Doe, even when they are very similarly qualified, simply for the fact that Ms. Smith is a woman.

What the bloggy left don’t understand about Obama’s approach to politics. It’s something I’ve always admired about his judgment. He will make a good-faith effort to work with his opposition to get done what needs done. But if that opposition responds to his good-faith effort with a bad faith effort, he will unapologetically move forward without them. Here’s one reason why this is a Good Thing: it’s a tactical investment. It builds trust in the broader community and fosters relationships with those members of the opposition who might be won over in the future. That’s a worthwhile investment to make, I think.

The consequences of our market-worship culture. What, exactly, makes a standard of living? Is it the fancy consumer goods we all have? A car for every person, a flat-screen TV in every house and a smartphone in every palm? Or is it something else? The security of a stable neighborhood, quality health care that isn’t a hassle, and a good education for your child even if you can’t afford the cost of living in the ritziest districts? These are things the private sector simply don’t excel at.

Self-care is essential. I do not use this word lightly. If these is anything my condition has taught me, it is the importance of learning one’s own boundaries and one’s own needs, and respectfully tending to them. Without this, you aren’t going to be any good to anybody else. You’re going to be more help to someone if you’re doing well yourself. If you’re rushed, stressed, overwhelmed with anxiety, severely lacking in sleep, seriously emotionally preoccupied, down with the flu, whatever — you’re allowed to stop and take care of yourself before you continue your work. Why do we insist that we push forward, always, through whatever challenges we may face? There can be virtue in that. But there can also be folly. I think this is a cultural force that could use some reflection.

After the reaction to a certain post of mine, I think this advice from Jill would be well-heeded in a variety of situations:

I understand that men are in an uncomfortable position when an abortion story is dropped into date conversation. Abortion is socially marked as taboo and horrible and universally emotionally difficult, so I understand why the first reaction is “You poor thing” or “You’re so strong.” I’ve never been in the same position as the author, but I have been on a first date where the guy dropped his almost-abortion story: His girlfriend got pregnant, they decided to terminate the pregnancy, and then she had a miscarriage. It’s not an easy story to respond to, so I fell back on How To Deal With An Awkward Conversation Topic 101: Mirror the other person’s reaction. He seemed like he was sad about the situation, so I think I said something along the lines of, “That sounds like it was really hard, I’m sorry.” And the conversation moved on. I also had a friend who once told me the story of his hugely swollen testicle — like, baseball-sized. In recounting the story, he was cracking himself up, so I laughed along. It’s really not all that hard to take your cues from the person who lived through the unpleasant ordeal. And I think that’s the author’s point: Not that men should universally think abortion is no big deal, but that they should take women as individuals who have varied responses to situations, and who very well may not be traumatized or upset at all — but who may nonetheless be highly annoyed and physically discomforted by a 30-day period. Or they may just be relieved. Or they may be sad, or even devasted. Or they may feel stupid for getting pregnant. Or they may have emotions that are mixed and that evolve. You know, like most human beings.

Read Kate take a righteous hammer to the bullshit that is how we, as a culture, introduce children to disability. Woo go Kate!

OK, this post might seem a bit out of place (and ignore the quick bit of gender-enforcing at the end). It’s just so deeply joyful to be a witness to another person reveling in wonder, over things big or small. Grapefruit isn’t my thing, but you find enjoyment in funny places.

This is why I love slacktivist.

Adam Serwer took all of three posts at TAPPED, I think, to become my favorite writer at the mag (and it’s not for my lack of appreciation for Klein). This kind of reflection is why.

Jindal and Obama could not be more different, and the contrasts begin but don’t end with the fact that one of them changed his name to fit in while the other carried his daddy’s “funny” African moniker all the way to the White House. Last night, the differences were clear: Where Jindal was awkward, Obama was confident. Obama has mastered his voice, Jindal sounded like he didn’t know how to give a speech. Obama had mastered a variety of tones and cadences early in his career, Jindal offered a forced folksiness to a sing-song tune. But perhaps the most telling part of Jindal’s response was his extended introduction of his family history. Until now, the GOP has allowed the press to make the Obama comparisons, last night, Jindal tried to make one himself, an act that was inadvertently self-diminishing.

You can’t find your voice by trying to become what everyone else is. You do that by trying to find what it is that makes you you. See also M’s musings on identity.

I’m off to bed, to dream of miniwheats in the morning.

And I love her even more for saying things like this.

There were several unforgettable moments in the Obama campaign—Barack’s impassioned speech about race, the DNC finale at Invesco, Madelyn Dunham’s death just before her grandson became president-elect—but none meant more to me than a two-minute bit of tape, a simple but monumental exchange between Michelle Obama and Soledad O’Brien.

In her interview with Michelle, Soledad circled around the issues placed at the center of every discussion about female identity by second-wave feminism. O’Brien wondered how Michelle felt about following a dream that wasn’t hers. She asked about leaving a “high-powered and highly compensated” career.

Michelle acknowledged the challenges. She graciously offered that she missed her colleagues and her work. But, she continued, she could always find another career. With only the slightest hint of irony, she said if she had more time, she might bemoan the loss, but she “had a lot on her plate” and what she was doing was “pretty significant.”

I thought, “You go, girl!” As if working with the love of her life and the father of her children to become the first family of the United States while radically transforming the world as we know it isn’t the most empowering choice a brilliant and self-determining woman could make.

But the real moment came in the next beat, 30 seconds that remain forever etched in my mind as the final blow to an ideology in which women’s empowerment is narrowly defined by financial independence, emotional autonomy and professional advancement.

O’Brien went in for the kill, the coup de grâce of second-wave feminism. “But sometimes your career helps to define who you are,” she said, probing.

“It doesn’t for me,” Michelle said immediately. “What I do in my life defines me. A career is one of the many things I do in my life. I am a mother first. Where do I get my joy and my energy first and foremost? From my kids.”

This has been a point of contention for me since I discovered feminism years ago. I was struggling with my disability, in the simplest, truest sense of the word: I didn’t know how to handle my life. I was in too much pain to participate in pretty much any regular outside-the-home activity. Certainly I couldn’t work. And yes, I felt judged for that. I felt like a bad feminist for “staying home.” Especially when a long term relationship with a man entered the picture.

More broadly, adult life in this society is centered around work for pay. One’s job is a central defining aspect of one’s identity. If not the specific job, certainly the act of working, cashing your paycheck, and paying the bills. The environment you work in, interaction with your coworkers, dealings with the public, dealings with your boss, the physical or mental effects your work has on you. For most people, work takes up a majority of their waking hours. How can those hours not be an important part of who you are?

Higher-class white feminism has wholly embraced this in recent decades as women made the move into the workforce. This is unfortunate, because it is alienating. It is alienating to many people and many groups. It is alienating, as I touched on, to people with disabilities who are unable to work. It is alienating to people in the lower classes for whom the idyllic “career” is a fiction, or at least a very distant and unreachable phenomenon. It is alienating to people for whom the pursuit of more wealth and more power are not the end-all, be-all to life. Hell, it’s alienating to people who just plain don’t much care for their job and who wish not to have their lives defined by it.

A person’s job, their industry, their field of study, can be part of their identity. Again: for many people, it’s a pretty big part of your life. That doesn’t mean it has to be the biggest part. And if it’s the biggest part for you, well, congratulations: don’t assume the same for every other person.

If you’re still not getting it, for a change of perspective, try rereading that paragraph replacing job with parenthood.

Get me now? Good. Moving on.

I don’t particularly think feminist theory values work for pay as the defining aspect of egalitarian womanhood, as such. But anyone reading this blog should be well familiar with the reality that the feminist movement is afflicted with (rather, more accurately, afflicts) a variety of prejudice, preconception, misconception, and general dysfunction. A movement is made up of people. Messy, imperfect people, who soaked in all sort of prejudice, preconception, etc. as they grew up in a messy, imperfect society. And here we are.

The thing about this work, issues of social justice, is that we cannot remove the mistakes and start over with a clean slate. It’s not that easy. We are working with complex, shifting, messy, organic beings, and the immaterial force they create when they are brought together.

And sometimes, the solution that is best to address a problem in that messy world is not the solution that would be best to address that problem — excuse the phrasing — were all other things equal.

For a time, financially privileged white women felt a very real force at work around them: the dictates of their social class preventing them from participating in work-for-pay. This, whatever their privileges might otherwise be, was not fair. And so feminists fought against it. And, in a limited sort of way, they won. Now women are accepted in most fields of work-for-pay. They’re allowed to be not just the secretary but the attorney. They’re allowed to be not just the nurse but the doctor. And though it’s laughable to assert that sexism in the workplace is largely conquered (ha!) they earn much more respect than they might’ve fifty years back.

But here’s the thing. When this subset of women had their worlds cordoned off, reduced to a fraction of what they could be were they not so imprisoned, what was the problem?

By this, I don’t mean “Was it actually wrong?” I mean, instead, “What is it that made it wrong?”

Was it that women weren’t allowed to experience that world of work-for-pay (and, largely, the prestige that came with it) for themselves? That seems to be what feminism has settled on, in practice. Feminists fight fiercely when anyone threatens their place in the industry. And they are fiercely offended when anyone reduces them to their traditional purposes: child-making and -rearing, house cleaning, looking pretty, existing only for the whim and betterment of their men. And often the response is much like that of Melissa (whom I mean not to put down; it’s merely the example at hand) at Shakesville a few days back:

I’ve worked or been otherwise acquainted with married men who told me their wives were gorgeous, thin, good in bed, big-breasted, etc., long before they told me their wives’ occupations, or any other bit of information that wasn’t designed to convey how awesome the men were because they’d scored hot wives—just another accessory like a car or a great flat in a trendy neighborhood.

Why is it that when feminists seek to define their identity as women free from patriarchal constrictions, they almost always default first and often only to their occupation?

What is it that made that restriction wrong?

I submit that what made it wrong was not the specific area forbidden to women: it is that they were forbidden from an area — any area — that could contribute to their personhood and identity, that would allow them to contribute in return to their families, communities and wider society. The wrong is not that (this subset of) women was forbidden this particular aspect of self: the wrong is that (this subset of) women was forbidden any particular aspect of self.

Considering this, we round out the picture of what, exactly, work-for-pay means to women. It is something a large set of women were denied for a long time, or severely restricted, a system of coinciding and contradictory reward and punishment, a system in which women simply could not win. They saw that the system was flawed, and they worked, hard, to change that system.

But their sights were limited. They could not scrub the slate clean. They could only clean up some of the mess, then build on what they had left. So we find ourselves here. Some of the fiercest feminists are also the most accomplished professionals, and they have no reservations when it comes to defending that place for which they’ve fought so hard. But in doing so, maybe they — we — have let that part of ourselves consume the rest of us. Maybe we lost sight of the rest of our lives. The so, so many other things that we do, that are so important to us, but which are not nearly so highly valued when reflecting on our own identity.

Do you identify yourself, first and foremost, as a member of a certain profession? Why? Is it really the most important part of you?

Can you see the cracks in that facade? Do you see the classism, lurking in the assumption that everyone (who matters) excels at one thing in high school, then studies it in college, perhaps masters it in graduate school, and then moves straight into a career in that very field? Do you see the ableism, lurking in the assumption that everyone (who matters) works, and that it is always money from employment that pays for a person’s shelter, food, heat and cooling, yearly two-week vacations and bar tab? Can you see how even gender relations aren’t instantly righted with affluent white women’s entrance in the work field — lurking in the existence of the second shift, the fact that a spouse and family is considered a downside when hiring a woman but a plus when hiring a man?

These things aren’t the fault of women who work. But maybe we shouldn’t treat the importance we give to work-for-pay so uncritically. Maybe we shouldn’t pretend that we actually did wipe that slate clean.

What else do you do in your life? I’ll bet you there’s a lot of things. I get a maximum of five waking hours outside of work on weekdays and even I have many more parts to my life than my work. My husband, my cats, my geographic home, painting, blogging, hockey, design, my love of sweets and grains and tea and homemade stroganoff and mac n cheese and tacos, my family, my husband’s family, my friends, my favorite music, dancing for myself when nobody’s around, the joy of movement and the peace in rest…

I invite you to reflect on your own life. My bet is you’ll find much that challenges this idea that work must be a primary aspect of self for women who strive to be free.

And with that foundation, maybe we can begin to explore the worlds of all the other billions of women who weren’t white enough, financially secure enough, healthy enough, anything enough to be a part of that feminist movement. But it’s ok — I’ll give you some time to digest first.

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 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.

shah8 on historical trends:

One of the things that I have noticed about big F feminism, and this may not be an accurate perception, so feel free to correct me, is that there is a much lower appreciation among women that enlightenment and oppression happens in cycles. Ever greater progression in civil rights is not typically the rule, especially beyond a generation or so. I believe that the current multigenerational expansion has alot to do with industrial revolution backed by fossil fuels.

As a black person mindful of history, I am very conscious in how drastically things can change. One form of slavery, then a cotton gin based slavery, boom! emancipation, then reenslavement through penury and prison labor, then Jim Crow a bit past the high point of that, then civil rights era, and as you can see, an increase and decrease in the quality of life over the past couple of hundred years. Same with jewish people in europe, and pretty much the same with women everywheres.

The shape of the economy tends to dictate what civil rights we have. If women becomes a currency (men who can provide for the largest harem has the most status), then the system feedbacks will force women to have no rights no matter how much women and some men may protest. The only times things change is when things become untenable, or when the dominant party figures to benefit from liberalisation. It hardly ever happens otherwise.

I believe that we are in a retrenching of civil rights. I know some of you think that a defensive crouch is a bad thing, but I have absolutely no illusions about human nature. People, by and large, are truly capable of being rather monstrously evil with little prompting or social conditioning. It takes quite a bit of social conditioning, equitable societies, and empathetic teaching to make people not act in a particularly “innovative” fashion. When things of that nature is going down, due to social or economic disruption, respect for civil liberties goes down as well. I think we *should* be prepared to play defense for awhile.

Deborah Lipp on those damn lazy teenagers.

Teenagers NEED MORE SLEEP. This is totally a fucking fact. They NEED MORE SLEEP. Am I repeating myself? And school is earlier and earlier. My son’s high school day has been from 7:30 am to 2:00 pm. WTF? When I was in high school (hundreds of years ago; I rode a mammoth to school every day), it was 8:30 to 3. What VALUE is there in making them wake up an hour earlier at the time in their lives when they need more sleep than they have since kindergarten?

So they’re tired all the fucking time, and by the way, since they have very limited access to lockers (so they don’t keep drugs and guns there, I guess), and schools don’t have the budget to have extra texts in class (because, oh never mind, you know), they’re also toting a shitload of books back and forth between classes.

So my teen, on days he doesn’t exercise, is exhausted when he gets up and then totes and 20 pound (give or take, it’s fucking HEAVY) backpack to school, and totes it between classes every 45 minutes, often up or down stairs.

But he doesn’t get exercise.

Fuck you, US Government.

Nezua, with righteous anger:

“I just wanted to work a year or two, save, and then go back to my family, but it was not to be.” His case and that of a million others could simply be solved by a temporary work permit as part of our much overdue immigration reform. “The Good Lord knows I was just working and not doing anyone any harm.” This man, like many others, was in fact not guilty. “Knowingly” and “intent” are necessary elements of the charges, but most of the clients we interviewed did not

even know what a Social Security number was or what purpose it served. This worker simply had the papers filled out for him at the plant, since he could not read or write Spanish, let alone English. But the lawyer still had to advise him that pleading guilty was in his best interest. He was unable to make a decision.

“You all do and undo,” he said. “So you can do whatever you want with me.” To him we were part of the system keeping him from being deported back to his country, where his children, wife, mother, and sister depended on him. He was their sole support and did not know how they were going to make it with him in jail for 5 months. None of the “options” really mattered to him. Caught between despair and hopelessness, he just wept. He had failed his family, and was devastated. I went for some napkins, but he refused them. I offered him a cup of soda, which he superstitiously declined, saying it could be “poisoned.” His Native American spirit was broken and he could no longer think. He stared for a while at the signature page pretending to read it, although I knew he was actually praying for guidance and protection. Before he signed with a scribble, he said: “God knows you are just doing your job to support your families, and that job is to keep me from supporting mine.”

There was my conflict of interest, well put by a weeping, illiterate man.

—THE TRUE STORY OF POSTVILLE

…

One day those on the “progressive” side of things who think they can pick and choose their little causes and relegate the rest to Pet Issue Land will be stricken with a very real sense of urgency when they realize that you can’t save the tenth floor lounge without saving the lobby and service entrance, too. And that the penthouses will fall the furthest before the fire’s done.

…

And those of us who are sensible and whose bones don’t rattle with the ghost of pat buchanan’s fear know that it’s not like these people care about the damn Census. They don’t care about Xicano blogotov throwers. They don’t want to “take over” your damn corrupt land.

They just. Want. To. Eat. And. Live. Just to be able to move about, working hard for pay. They love their country and very often come here because it is the USGOV’s business and practice to squeeze every bit of profit we can and centralize it here. They don’t want to be here very often. But we shut down the open flow. USGOV is starving. USGOV is broke. USGOV is shaking in its boots…

You aren’t fooling anybody, sweetie.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

This day to celebrate our country and all its inhabitants — to a good lot of those inhabitants, this day doesn’t feel like it’s theirs. This day is for someone else, not for me.

And the sentiment is pretty widespread when you think about it. It applies to all groups.

To a poor child: college is for someone else, not for me.

To a person living with an abusive partner or family member, who has never seen someone they know personally ever have anything better: respect for my dignity and autonomy is for someone else, not for me.

To the little girl in school: complicated mathetmatics and science are for someone else, not for me.

To the child of color, or child with a visible disability, who sees advertisements everywhere (for toothpaste, for breakfast cereal, for universities, for bank services) with skinny white people with perfect teeth and “good” hair: society in general is made for someone else, not for me.

When we structure our society this way, we may not be saying explicitly, this is Not For You. But those people get the message — loud and clear.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What was I?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

via tigtog

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

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

Deep breaths.