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.

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.

Today’s roundup brought to you by oh look a feather toy!

An acquaintance of mine shared a post that linked to Peter Singer’s latest piece in the NYT Magazine, “Why We Must Ration Healthcare.” Most of the article focuses on the fact that health care is currently rationed in the U.S., whether by price or by less tangible factors such as ER wait times. I don’t disagree with that part; that’s nothing more than a clear-eyed look at the reality that the American health care system has barriers to accessibility. Where Singer goes off the rails for a demonstration of Able-Bodied Privilege 101, however, is when he discusses how to put a value on human lives as a precursor to putting a value on health care. In order to demonstrate the utility of quality-adjusted life-year (QALY) in rationing health care, he uses the example of how an able-bodied person reacts to a hypothetical situation in which they become quadraplegic, and how their desire to live changes. He then goes on to present a situation in which persons with disabilities (PWD) are damned if they do and damned if they don’t: he suggests that if a PWD is happy with their life, they don’t need any treatment that would improve their lives, and if a PWD is not happy with their life, then it would be wasteful to spend money on treatment that would improve their lives.

I consider this a must-read for anyone who is new to disability rights. Pizza Diavola does an excellent job showing where Singer’s logic simply falls apart, and in fact his arguments do not make sense without assuming the supremacy of the able body. But disability is not an inherently bad experience; it only becomes this phenomenon of tragedy and suffering when society refuses to provide support for people of all sorts, rather than upholding the narrow and unstable health ideal.

Following Singer’s logic, we would pretty much never seek to improve our lives in any way because to do so would admit that we were not happy with our lives beforehand, and if we were happy with it, then it would be useless to do anything to change it. How this is seen as a rational analysis of New York Times caliber, I’m not sure. But apparently Peter Singer hates the wheel, the microwave oven, cotton fabric (admitting that life wasn’t good enough without versatile and insulating body covering!), the printing press, public education, agriculture, language, music, sunscreen, and buildings (admitting that life wasn’t good enough without shelter from the elements!). Among other things.

But because disability is constructed as a tragedic deviation, we end up with nonsensical, circular arguments such as these. And it has unfortunate influence, and will further marginalize people on the basis of their inherent inferiority and thus forfeited right to life (any life, according to Singer, who would have us all killed or otherwise eliminated rather than complicating things for the currently abled — and no, unfortunately, this is not exaggeration or extrapolation; he has advocated exactly this).

Help Find the Cure for Disablism!

Disablism is a common disorder which can begin in early childhood, though its symptoms are often much more marked in adulthood. Without preventative measures, disablism can grow into a chronic condition that becomes more difficult to cure with time. Early detection and proper treatment are key to helping those with disablism lead stronger, more productive lives.

FAQs

Is disablism contagious?
The jury is still out on this question. While some epidemiologists believe disablism may have a contagious aspect and may spread virulently, other researchers emphasize individual health habits and responsibilities.

What is the treatment?
Treatment varies by the degree to which the patient is affected. Treatment focuses on creating new, nondisablist behaviors. For patients unrectifiably deficient in empathy, legal remedies may be required. Please ask your doctor for more details.

What can I do?
Most importantly, educate yourself about disablism. Ask your health care provider, “am I disablist?” Equally important, watch for early signs of disablism in your loved ones and seek early treatment. Disablism is much more cureable in its early stages than when its victims become homicidal or harm others. In addition, help raise awareness about disablism. Discuss disablism and its harmful effects with others.

For more information and resources on disablism, call the Cure Disablism Network at 1-555-BE HUMAN.

This clip from British tv show That Mitchell and Webb Look has made the rounds as a short and sweet parody of gendered advertising. I think it is also useful as a look at medicalization and the way medical conditions are presented in popular culture.

Transcript:

[Blonde, average-looking woman standing in front of white background, reacting to voiceover by crouching and grimacing, with graphic overlay of radiating circles emphasizing different areas]
Woman: Ow. My stomach!
Man’s voice: Do you suffer from gut agony?
Woman: And my head!
Man’s voice: Tension head? [Woman nods, grimacing] Got that bloated feeling?
Woman [beginning to look slightly surprised and self-conscious]: Ooh…
Man’s voice: Inevitable wrinkles? The beginnings of lady moustache? [Woman covers lower half of face with hands] And now you’ve pissed yourself again? [Woman crosses legs] Women. You’re leaking, aging, hairy, overweight, and everything hurts –
[Young boy walks on set in white dress shirt splattered in colorful stains]
Man’s voice: — and your children’s clothes are filthy! No wonder men long for other, less clammy women. For God’s sake, sort yourself out.
[Image appears on screen of assortment of several hundred personal care products, captioned "APPROX $279.99, THE LOT."]
[Woman walks onto set toward couch, with large, bulging full tote bag on one shoulder]
Woman [tiredly]: Now I’m free to live my own life, my way! [falls back onto couch]
[Scene changes to white man in bathroom with razor]
Man’s voice: Men! Shave and get drunk!
[Man has satisfied look on his face as he opens medicine cabinet, finds glass of beer sitting inside, picks it up and smiles smugly, taking a sip]
Man’s voice: Because you’re already brilliant.
[Man smiles widely at camera as woman's hand appears, groping his chest]

ginmar speaks movingly about mental illness, military veterans, and the phenomenon of “fallen women.” A few pieces; there’s much more.

It’s a pain in the ass to experience. Frankly, you’re no fun to live around during this. I mean, people have been brought up on movie mental illness, where you turn into a sweet, soulful, funny, insightful, tragic, tormented character who Teaches Important Lessons, before dying in a beautiful way that gives the hero or heroine a chance to win an Oscar.

It’s especially bad if you’re a woman, because you’re supposed to live for others, do for others, and do this al behind the scenes. The fact is that women who transgress in some way—bad mothers, not mothers, convicts, the sick, the non-sexually rebellious—-are often abandoned. Women are supposed to stand by their man. What goes unsaid, what’s kept secret is that ill women are resented, dumped, and have to face a dual burden of illness and ill-treatment. There are approximately 6,500 homeless female veterans of this war. Homelessness is often the worst and final stop on the mental illness ladder. It’s bottom. Then, too, homeless women in general are ignored. When the truth is overwhelmingly awful and about women, people just shrug their shoulders and put it down to life. When women get angry about this treatment, they often find the mentally ill label used to stigmatize them.

[...]

Suicide tidied things up neatly. By killing herself, the victim had provided her family with a tragedy over which they could weep, instead of an inconvenient complication who aroused questions that were literally unthinkable for the thinkers of the day. With her gone, so was any reminder.

[...]

What’s interesting is that both male and female soldiers are often regarded in this way: better a flag-draped coffin than a living, complex, and often angry veteran. What a drag. Better a tragedy than a complication [...]

That’s the work of a certain class. The resentment is very much the attitude of the person who discovers that those who serve are also those who know their worth. That wasn’t supposed to be part of the deal. You’re supposed to work round the clock, then disappear when not needed, grateful and humble for scraps from the table.

Which is why maybe soldiers like me, especially women, are often greeted with sadistic gloating when we crumble.

Healing is the process of a body, having been injured in some way, doing what it takes to restore itself to normalcy. Merriam-Webster says, specifically, “to make sound or whole” and “to restore to original purity or integrity.”

Take note of the words I have highlighted. What are they saying?

This cultural idea of healing, applied to a person’s spirit rather than body, draws upon the idea of an abnormal body being made “normal.” It assumes that any person not normal should be made normal.

But there are all sorts of bodies in this world. Bodies with broken bones, broken skin, disfigured limbs, faces, with cuts and gashes and wounds, missing limbs, missing organs, organs which work in abnormal ways — according to our cultural norms.

And, much the same, there are all sorts of people in this world. People who have survived assault and abuse, been subject to violence, faced trauma, been manipulated or neglected, dealt with addictions, lost loved ones. People who have experienced any number of things which cause them significant distress.

These people are expected to “heal” from their experience. They go through a modest amount of time processing the event emotionally and then return to normal.

But why should they be made normal?

Why should any broken person be pushed and pressured into a form which does not fit?

Why is it that a person who is anything other than normal is therefore less than whole?

Why can’t a person simply be who they are, even if they are injured or broken or disfigured, and still be considered a whole person?

Any person who has faced trauma will need to find ways to process their trauma, ways to cope, ways to live with what has changed in their life. But that person should not have to push hirself to go back to how things once were — or to make things resemble what they are for a person who has not faced that trauma. Things may be different. There is not only one way to live a life. There are many. And perhaps you will settle into a different one — one which works better for who you are now — which may not have worked for who you were before. And that way is no less right.

What do you do when life changes? You adapt. You make things fit you. You don’t make you fit everything else.

It’s ok to be broken. Being broken does not make you less than whole. It makes you different. And that’s ok.

related posts: You don’t have to be normal,Untitled.

This post was written several months ago, inspired by but not necessarily in direct response to this post at The Curvature. I went to bed after writing it, intending to post in the morning, and forgot, until I found it in my draft folder just now. Scatterbrained would be the kind way to describe me.

I’ve met a lot of really cool people, I’ve learned a lot of really important stuff, and I hope I’ve made some small difference in some small way, somewhere.

You guys have kept me going. I wouldn’t still be here without feedback, without someone telling me that what I said made some difference to them. I am steadily finding my own voice in writing, sharpening the mind (allow me to stop for a laugh – ha! – ok) deepening my understanding of these issues.

Two years ago, I didn’t identify as “disabled” myself. I was interested in feminism, but I had little concept of the weaknesses the in mainstream feminist movement, particularly around race, trans issues, and (though it’s seemingly never identified so outrightly) class. The more I’ve explored, the more I’ve learned.

And the more I’ve vocalized my thoughts, my experiences, the more I’ve learned about myself; the more I’ve been able to figure out who I am, what I care about, what my strengths are and what I need to work on.

The people who have taken the time to read my comments and posts, to respond, to support and to challenge — you folks are so important. Movement building is a community effort; it takes all of our individual voices to form a strong collective force. Even when you feel small and isolated, you are still a part of the whole, an important part.

I want to encourage anyone who feels small and unsteady to raise your voice, to speak out, to detail your experiences, how they affect your views, how you think we can make this world better. Our personal stories are far more powerful than many let on. We, the small people, connect with each other, commiserate, deliberate, and decide on ideas and priorities that trickle up, over time, to the top reaches of the power structure. It does happen. We make it happen.

I love hearing from all of you. And I hope you will speak out more — in comments here and elsewhere — or in your own space — and develop your own voice. You might feel small and unimportant, but you might be surprised, when you tap into that voice, and feed it, and shape it — how strong it is.

And you might — like me — be surprised, when you use it, to find people who normally keep quiet will speak up.

Your individual experiences may not be representative of the mainstream. That is all the more reason to speak about them. Because there are others, like you, who would be strengthened to see their experiences represented somewhere.

And the entire community will be strengthened when it can recognize the range and diversity of experiences within it.

Thank you for everything you have contributed here. And I hope I’ll see you around.

***

We had a really good discussion about nondisability. It got derailed, a bit, because it depended on our ability to reasonably define disability. And it’s a subject that has come up in every discussion we’ve had these couple weeks. What is it?

I advocate an intentionally overbroad definition of disability. And I definitely see a tendency, with certain medical conditions, not to identify — on that inner level, what “feels right” — as disabled.

I support every person’s right to self-determination, to define their own experiences, and to identify however feels most right for them. I do not want to try to pressure people into identifying in a way they do not feel comfortable. But I do think that part of this tendency, this reticence, is rooted in a sort of ableism. Not ableism as in “internalized negative feelings about PWD” — but ableism as in “a certain understanding of how the world works and how society is/should be structured” … or, you might say, a certain model.

I want to explore a few things — explore our assumptions behind the word “disabled.”

1.

Think, for a minute: visualize a disabled person. Just a generic idea of a disabled person. What would you say are the requirements to qualify as disabled?

Do you have to be disabled — in a dictionary definition sort of way? Disabled, unable, incapable? Unable to work, or unable to participate in social activities, or unable to take care of oneself? Is there a certain level of un-able-ness one must reach to qualify as disabled?

If so, what do you call the people who don’t reach that level — but who share many, if not all of the exact same problems with accessibility in society, who face the same obstacles in their path, the same ignorance and hostility? The people who have the same condition, but face different accessibility problems because they are trying to navigate the workplace, living independently — who are able to do these things — but who still have to fight with the outside world to be able to live their life how they want to?

Are these people disabled? No? Are they abled, then? Are they privileged over the people who meet that level of un-able-ness?

Am I “temporarily able-bodied” because I can push myself enough to work full-time?
Because I can walk? Drive? Prepare meals? Go to sports events and concerts?
What about the fact that I still have to fight with my doctors over medication? That I still have to approach HR at work to tell them about everything I need to be able to work there?
What about the fact that without the drugs I am taking and my TENS machine and my access to health care and workplace accommodations and accessible parking, all of a sudden I wouldn’t be able to do those things anymore?

Is my disability about my inner feelings when I get home and slouch in pain — is it about what is going on in my body? Because I still have pain, whether I am well-treated and working or untreated and housebound. I still have fatigue. I still struggle when I stand up from a sitting position, still need help getting out of the car if I haven’t taken at least a few painkillers already that day. All that stuff is still there.

Or is it that my disability something beyond me — not having to do with me at all? Not defined by what is going on inside my body, but defined by whether society is working with my body or working against it?

2.

I’m going to let you in on a secret. A lot of us people who do fit the classic dictionary definition of “disabled” — don’t feel “disabled” either. We don’t always feel un-able. We feel like “just people.” Normal people living a normal life, just happen to have some sort of neurological or physiological difference, but that isn’t our defining characteristic or something that is always forefront in our minds, it’s just one part of us that doesn’t always make that big a difference in our life at all.

3.

Remember, briefly, the social and medical models of disability.

Under the medical model, a person must justify their claim to disability. A person must fit neatly into a narrow diagnosis with a Latin-based name. The person must be cleanly categorized. Their experiences must fit a prepared check list.

The medical model says that your body fails to be normal in this particular way: so we must devise a way to force it to be normal, and that will solve the problem.

Naturally, such an approach to disability will wind up excluding a good many people who don’t fit those boxes cleanly, who appear close to normal — and that just can’t be right; there must be a logical explanation, like that they are over-worrying, imagining things, that they like being sick and want the world to treat them with kid gloves. After all, there is no proof that they deviate from the normal — so they have failed to justify themselves as different.

The medical model, in this way, denies community and services to people who still face considerable obstacles to full participation in society because they have failed to prove that they deserve that “special treatment.” They have failed to prove themselves as disabled enough. They aren’t “other” enough to be Othered.

The medical model imposes strict and narrow definitions — which become boundaries which must be policed.

What do you do when you’re caught in the middle? Different, but not different enough to be Othered, but still needing services (benefits, accommodations) which are only given to Others.

4.

Informed by the social model, “disability” becomes a marker not for condition (mental or physical) — not for “what I feel inside, what I experience inside” — but instead for the fact that our condition is maligned or neglected (or both) by the rest of society.

Disability is not a matter of my condition, but a matter of the group I am assigned because of that condition.

Perhaps it could be said as such: Disability is not a condition, it is a status.

5.

The classic analogy to explain the social model is this:

Many sighted people have less-than-perfect sight. If assistive devices — glasses or contact lenses — were not so widely available and accessible, many of these people would be prevented from full participation in many aspects of society.

But because society sees fit to prioritize this assistance, to make sure glasses/contacts are widely available and accessible so that every less-than-perfect sighted person can have clearer vision — because society decided that no person should be blocked from access because of hir different vision — this condition is no longer a disability.

This is a useful thought experiment. But it is not a perfect analogy. Many blind people still face considerable access blocks. This only really applies to people who are sighted, but whose sight is not precisely “normal.” Perhaps because society can, for the most part, bring abnormally-sighted people to normal-sightedness, whereas it cannot do the same to blind folk.

There’s a lot to explore here.

6.

The word disability isn’t perfect. I don’t know that I would choose it, were we to start over with a blank slate. Nor do I know that most people who are active in the disability community would choose it.

What I do know is this: people who don’t feel, literal-dictionary-definition disabled, embrace the word and run with it. They can make it something all their own.

Queer is a less-than-perfect word when you consider its literal definition, too. Yet the queer community has decided that they’re gonna take this thing and make it into what they want it to be. And they’re making something pretty damn awesome.

I don’t feel dis-abled. I feel people-are-willfully-ignorant and access-to-good-care-is-restricted-in-unnecessary-ways and the-medical-industry-has-no-respect-for-me. Among other things.

And I’m sure other disabled folk feel why-isn’t-there-a-wheelchair-ramp-for-this-public-use-building and nobody-has-to-accommodate-my-needs-until-they-get-sued-why-don’t-we-have-an-oversight-board-that-makes-them-do-it-right-from-the-fucking-start and you-aren’t-providing-alternatives-so-I-can-access-your-lecture-even-though-I-can’t-[hear-what-you-speak/see-what-you-write/be-there-in-person-at-all]. Among other things.

People who identify as disabled (or are identified as such by society) don’t necessarily always think the dictionary definition of the word applies to them. There are disabled people in wheelchairs or braces who still work, still have families, still go to parties. There are disabled people who appear totally abled yet can’t work, can’t perform certain self-care, and so on.

The word “disability,” in the disability movement right now, already refers to a great variety of individual conditions, abilities, approaches…

And for the most part, when a person appears whose condition challenges the current boundaries of abled/disabled, the disability community is completely ready to revise their assumptions and welcome that person (and hir companions) into the movement.

Because, here’s the thing…

7.

The disability movement has a lot to offer to a lot of different people — not all of those people who may identify as disabled.

And this is part of why I do not want to pressure people to change their identification. They don’t have to identify as a disabled person, or a person with a disability, to still become a part of the disability movement, to benefit from it, to help move it forward.

What I am wanting to do is not change people’s minds about how they individually self-identify. What I want to do is explore the cultural phenomenon that is certain groups rejecting the label of disability.

Anyway: the disability movement is working hard to change the way we approach the world. From an approach that excludes non-normal people to an approach that stops INcluding by certain standards and starts just treating all persons as fundamentally human, period.

Under the current system, when a woman becomes pregnant and plans to keep the child, we expect the child to be free of disability. What’s that refrain from the supposedly-gender-enlightened? “I don’t care whether it’s a girl or a boy, as long as the baby comes out healthy!”

When we encounter a person, we expect that person to be abled. When we imagine a “person” — just a generic, default person — we imagine that person as able-normative.

Currently, things go like this: 1. World expects “normal.” 2. Non-normal people come along. 3. Oops!

What disabled people want is more like this: 1. World is prepared for any number of different things. 2. We come along. 3. Hey, we were expecting you!

This approach is what defines the disability movement. We want to change the world so that the world stops treating us as unexpected — and therefore a disappointment — and therefore has not prepared for us — and therefore we have to constantly fight with the world to make it change every little individual thing it has set up wrong.

This approach, applied broadly, has benefits for so many more people than only the classically, dictionary-definition disabled.

This is the world I want to live in (bold emphasis added)…

My body isn’t the enemy, I realized.

It’s not my physical self that creates all my problems.

It’s all the external expectations of it.

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.

[Reading back, I cringe at the use of the words "straightforwardly lacking." Proof that we are all still learning, still building.]

What if things did happen that way? What if we just rushed to give, knowing that those around us would rush to give back?

and in this POV, the centering of individualism falls apart — because that’s not what life is about. life is give and take, push and pull, you do this for me (that i don’t do well/don’t like to do, but that i want/need) and i’ll do this for you (that i do well/like to do, and you want/need).

disability, really, when you get down to it, is the ultimate unraveling of that ball of individualism — it FORCES you to look at all these little things that go into the living of a life, and realize that not all of them are yours to do or yours to control — and also to realize how many of those little things YOU affect for OTHER people’s lives — and to finally give up, and fall back into the arms of the community.

it means you have to stop looking at things as “mine, yours, this person’s, that person’s” etc. you have to stop keeping the damn tally — and just rush to give, knowing that those around you will rush to give back…

so many people are afraid to admit that ultimately, they DO depend on the people around them, and their accomplishments are not solely their own, and the things they do, affect people besides themselves. but it’s all true! and it’s not a bad thing, if you look at it the right way.

This is everything we are trying to change.

And when we are successful: it will be good for so many people. It will benefit a great many, people who might not consider themselves part of this movement, but who will see their life become substantially easier or better, because this movement has destroyed the system that puts obstacles in their path.

8.

There is a lot people can learn from the disability movement — even if they don’t consider themselves a part of it.

This is why I, and others, explicitly tie our disability activism to our feminism. Believe it or not, there are things that non-disabled feminists can learn from disabled ones about how to refine, how to better our (not their, OUR) feminist movement.

There are things the disability movement is accomplishing that the feminist movement has fallen short on. Things that disability activists are paying attention to that feminists have forgotten.

And it makes a difference in women’s lives.

9.

There are substantial immediate benefits to individuals, as well. Many of you who do not feel “disabled” nonetheless benefit directly from the Americans with Disabilities act and other non-discrimination legislation. And that’s only in the realm of the state (legal sense).

Consider the pharmaceutical industry. The alternative medicine industry. Consider protections on health insurance that prevent companies from discriminating against people with pre-existing conditions or prevent them from denying certain treatments.

These are all things the disability movement has had part in. Often, the disability movement has been the sole force pushing for these things — when other movements fall short, and forget us.

And there is, therefore, substantial benefit to involving oneself in the disability movement. Because it is working for you. So it will do good for you and for us if you directly engage with it — help it refine its purpose — help direct its actions — help challenge preconceptions.

If you will stand with us, if you will be — a friend, or a family member — whatever role you feel comfortable taking, we will stand, sit, lean or lie beside you. We will be there with you, however you identify.

We want more people to engage with us — on an honest, good-faith level.

Some of those people will find themselves beginning to identify as a part of this movement, as a person with a disability. Some people will not, but will remain our friend, our ally.

No matter which: we are happy to have you.

***

ETA: I really should have included a link to this post from Joel at NTs Are Weird — from the perspective of the autistic community. I ain’t the only one beating this drum! I remember reading this post a long while back, and it has informed my politics a great deal. And I think it is necessary reading for anyone engaging with the disability movement. And he does a great job wrapping up the many elements of this post! ;) Take it away (bold emphasis mine):

Welcome to the disability community! [...]

Yes, that’s right, you’re DISABLED. Yep, you can pick that word apart and tell me why you aren’t, but, trust me, you are. And, no, I don’t mean that you are less or more functional than anyone else. I mean that you are part of a community defined by society’s institutions and programs, a community formed because of our minority status and the fact that society expects certain strengths and weaknesses, and anyone who doesn’t have that same pattern of strengths and weaknesses is going to have trouble in this society.

Yep, that’s the social model. It’s not the “OH MY GOD, I AM SO BROKEN AND LIFE SUCKS AND I WANT TO BE NORMAL BECAUSE EVERYTHING WOULD BE WONDERFUL AND I WOULD HAVE LOTS OF MONEY AND A GIRLFRIEND AND A NICE CAR” view of disability. But it is recognition that we have trouble in society as it is currently set up. You’ll also notice that it is not a view that accepts society as a static, unchangeable, and morally good entity, but rather as an institution that can and should change – even when people have a hard time seeing how it could.

In addition to this, I want you to know that there is “nothing new under the sun.” You don’t need to reinvent disability theory [...]

One example – although the victory isn’t yet fully realized – find out why there public transit has to at least make *some* effort at accommodation in the US. Yep, I know it still sucks, and there are tons of problems – I’m not saying anything different. But I can assure you of this: Without good advocacy, there wouldn’t be a wheelchair lift on any bus except one owned by a nursing home – and even that one might not have one.

Find out why people with cerebral palsy can go to US schools today, even if their natural speech is hard to understand, thanks to assistive technology and good law. Sure, schools, technology, and law aren’t good enough yet, but they are way better than they were 40 years ago. Why?

Better yet, learn how you can make a bus in your city more accessible both to yourself and to someone with a different kind of disability. Learn about your schools and what can be done to help others with disability. Not just autistic people, but people with all types of disabilities. Do you know what you will find if you do this? You’ll find out quickly that it also helps you, even if that wasn’t the goal of the movement.

For those of you who are already doing these things – thanks! It’s good for us to stop reinventing the wheel once in a while.

(Cross-posted at Feministe.)

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.

even after death
they stuff our bodies into boxes …

– mscripchick

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

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

– commenter Isabel

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

– commenter Eve

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

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

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

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

– Veralidaine

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

– Adele Carpenter

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

– Wheelchair Dancer

Amanda

Some highlights, all emphasis mine.

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

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

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

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

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

Similarly:

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

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

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

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

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

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

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?