It appears that the mother, at best, took advantage of her son having failed to log out and clear all cookies and personal history from his computer every time he leaves it for half a moment, and at best, straight-up hacked his account — read some things she didn’t like, and responded by posting things all over his page in an attempt to embarrass him and then going to the length of changing his passwords on his Facebook account and his email so that he couldn’t do any damage control after he found out about it.

She thinks that these actions constitute a “conversation” with her son.

The son lives with his grandmother. Someone, somewhere (I can’t find an attribution) claims that he and his mother had a “great relationship,” a claim that sounds suspiciously like the refrain that commonly comes from assaulters and abusers, from cheaters and absent parents and partners. They truly have no idea that something is deeply, thoroughly wrong with the relationship, and the signs of the second person in it — the object — protesting against that wrongness are lost on them.

Like, you know, the fact that her son does not live with her and prefers not to have any contact with her at all.

The mother is living it up in the face of all this attention. She gets to assert her ownership of her near-adult son and know that a great many will rally to her defense in response.

New plans on fighting the charges, as she believes she was fully within her legal rights as a parent to monitor her son’s online behavior.

“Oh yeah, I’m going to fight it. If I have to go even higher up, I’m going to. I’m not gonna let this rest. I think this could be a precedent-setting moment for parents,” she told KATV-TV. [source]

Denise New says she plans to fight the charges saying if the suit is successful it will be “open season” on all vigilant parents who seek to keep their children in line. [source]

“You’re within your legal rights to monitor your child and to have a conversation with your child on Facebook whether it’s his account, or your account or whoever’s account.” [source]

“If I’m found guilty on this it is going to be open season” on parents, New said Wednesday.

“You’re within your legal rights to monitor your child and to have a conversation with your child on Facebook whether it’s his account, or your account or whoever’s account,” she told KATV. [source]

“The things he was posting in Facebook would make any decent parent’s eyes pop out and his jaw drop,” Denise New said. “He had been warned before about things he had been posting.” [source]

Denise New acknowledged changing both passwords to keep her son from getting access to his Facebook page. She denied hacking into the account.

“He left it logged in on my computer,” she said. “It’s not like I stole his laptop.” [source]

Readers will note a common refrain in many of the non-strictly-news sources above (and found here): “What ever happened to de-friending?” As though this is a matter of a son allowing his mother to have viewing access to his page through her own account as a friend. The son may never have allowed his mother to have an inkling that he had a Facebook account: she still forced her way into it. Not in view of it, in control of it. This doesn’t have anyfuckingthing to do with who you friend and who you don’t.

Of course, most sites focus on the potential implications for parents’ rights, and there’s a good reason for that: our society cannot deal with the idea of children as full human beings with ownership of their own selves. It is firmly entrenched in our social consciousness that children are objects, possessions, things lacking full personhood, desire, decisionmaking ability, agency.

Much like women used to be (and are still, to some extent) considered, hm? Objects for the benefit of the full beings who own them. Women would be passed along from fathers to husbands, traded for physical and monetary property, no distinction between the two things in that transaction. Not identically, but similarly, children are considered objects owned by their parents much the same as wives were objects owned by their husbands. (I expect that mothers reading will feel this a little more intuitively than fathers might — knowing that oneself might be on the object end of that transaction can produce a different reaction, sometimes.)

It is interesting that the immediate reaction to this story on the part of adults, especially adults who have children, is to consider the parent’s plight in this story, completely neglecting the concerns of the child. And it reminds me how (feminist) abled women immediately rush to think about the plight of the caretaker in any story of caretaker abuse of PWD, completely neglecting the concerns of the person being given the care, as though they don’t even exist. As though they are objects: things that cannot be affected themselves, that can only affect the full persons in their non-lives.

It is telling, really, who we consider to be persons worthy of consideration, whose problems we consider to be important and worth solving — and who we consider to be persons completely ignorable, whose problems aren’t worth consideration and don’t particularly need any attention, much less any attempt at solving. (In fact, the solution to their problems might interfere with the solutions to the important problems — so they should be crushed if possible.)

This is what we are. People read this story of obvious, clear violation of boundaries, and think immediately on their own right to violate others’ boundaries: or else they resort immediately to blaming the victim for this clear violation of their own boundaries. The reaction more comment from non-parent adults.

How ridiculous, right? That a boy would assert his right to his own fucking life without his abuser’s interference. Especially when this parent doesn’t even have any fucking custodial rights! And we still rush to her defense. How poisoned are we?

So many people have complained that it is asking too much of abled people to stop using words they consider trivial: crazy, insane, lunatic, idiot, moron, dumb, blind, etc.

I beg to differ.

You know what is really damn easy? Erasing these words from your vocabulary. All you have to do is stop saying them.

You know what is really hard?

Confronting people on their use of same language.

We aren’t even asking you to do the hard work. We aren’t asking you to tell other people to stop using that language. We aren’t asking you to confront other people on their use of that language. We aren’t asking you to explain why it is problematic, to answer people’s questions, to deal with their redirection tactics, or to handle the attacks on and harassment of the people negatively affected by that language that such confrontations always seem to draw.

You don’t have to take the brunt of it. You don’t have to deal with the negative consequences. You don’t have to face employment discrimination, street harassment, caretaker abuse, and other people’s general cluelessness about our lives. You get to sit tight in your privilege, enjoying it without even realizing you’re doing it.

All you have to do is cut a few words out of your speaking and/or writing vocabulary. That’s it.

We’re the ones who are putting our safety on the line trying to change the cultural system that oppresses us.

Two seconds to reconsidering what you’re really trying to say? Easy.

Changing other people’s deep-seated attitudes? Really damn hard.

How do you think we feel when you complain that two seconds is just tooooo haaaaard for you to take on?

(Cross-posted at FWD.)

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!

From the O-R: K***** Y****, 13, and his sisters K****, 9, and K********, 4, tend to their patch of tomatoes this afternoon at (the garden)… K***** also is a garden guardian who waters all of the plants on a regular basis.

Look familiar? My thoughts are conflicted in that post, about the real root (so to speak) of our modern issues with connection to our earth, but make no mistake: this garden is an unequivocal positive for the people who use it, and it makes me inordinately happy that it is here.

There are two things going on here:

* Professor Gates, who has a cane so that he can move independently, could probably have made it down the stairs on his own. That’s not to say without pain or difficulty — but he wasn’t helpless. The reaction to this photo presupposes that the crippled man must be completely unable to help his own damn self, and that it is noble when the able-bodied officer presumes to “help” him. Do you see what this does? It removes Prof. Gates as an agent; it makes him, instead, an agency-less object, existing for the purpose of the able-bodied man: this time, as a signifier of character (taking on that noble burden).

* Speaking of noble burdens: the race of the men involved cannot be ignored. Sgt. Crowley is a white man helping a crippled man. In the right wing’s reading of this photo, Sgt. Crowley becomes a symbol of whiteness: an example of the way in which white men are Good, in which Good is defined as the way white men do things. Think boot straps: this fantastical myth is all about the inherent goodness of the white man, who does things the right way, in contrast with the minorities, who are too lazy, selfish, etc. to bother. Sgt. Crowley presuming to help Prof. Gates stands in contrast with President Obama, who is walking ahead, minding his own business. This shouldn’t be an issue, but it is seen directly in front of the white man taking on the noble burden, and thus becomes an indictment on the character of the shiftless, self-absorbed black man.

Who was it for?

Of course it was reported as a sort of reconciliation: a way to help Prof. Gates and Sgt. Crowley make up. But that wasn’t what it was.

To sum: Prof. Gates arrived home after a long and tiring flight, and couldn’t get in his house. Someone called the police, thinking that a stranger was breaking into his home. Police arrive when Prof. Gates was already in his home and calling a locksmith. Prof. Gates shows ID to Sgt. Crowley proving this is his home, may have been “belligerent” in doing so. Sgt. Crowley responds by luring him to his front porch, where he is handcuffed and arrested for disorderly conduct. Outrage ensues; charges are dropped. (Police insist the original caller reported that black men were breaking in; recordings prove that she said nothing about race at all.)

Journalist asks Obama about this during a health care press conference. Obama says a few predictable, innocuous things, then says that it is obvious that the police “acted stupidly” in arresting Prof. Gates in his own home for no crime committed, then makes a simple comment about the inarguable history of racial profiling in this country.

Sgt. Crowley objects loudly, saying the President is “way off base.” Sgt. Crowley is obviously very upset, and the police force is standing in solidarity with him. The country is beginning to criticize Obama for admitting the troublesome racial aspects of the story; the conventional wisdom is becoming that Obama bit off more than he could chew in “bringing race into this” — and white America will make sure that he is taken down a notch for it.

So Obama invites the two men to the White House for a beer. The country reacts with mild derision — but the attacks begin to fade. The issue is neutralized.

See what’s going on here? White man does something unfair to black man. Black man protests that this was unfair. White man’s sensibilities are offended at the accusation that he could ever be An Unfair-ist, makes this into an argument about whether or not he is a Good Man (being unfair would necessitate that he is a Bad Man). All his friends know that he is, in fact, a Good Man, and they stand up to say as much. Black man looks around, realizes that the numbers are not on his side. That everyone has ignored the unfair way he was treated, and his family and friends have been treated throughout history. That there is unrest among them, and he may face very real consequences if he presses the issue any further.

So the black man backs down. Makes conciliatory noises. To soothe the white man’s feelings. So that the white man won’t cause him any more trouble.

What was this beer summit about? Did Obama really think he was going to solve the issue of racial profiling and police officers behaving unethically by inviting two men out for a beer? Of course he didn’t. That wasn’t the purpose.

The purpose was to get the offended white man (and his white friends) to shut up and stop causing the black men trouble.

And I don’t blame him.

Quick, think of a disease or condition that affects only men and is considered by a large portion of the population to be fake, created by the pharmaceutical industry, or psychosomatic.  *Sound of crickets.*

An excellent look at the gendered construction of medical conditions at the Women’s Sports Blog.

Most of the language about credulous patients being duped by Big Pharma is directed at women and conditions they suffer from disproportionately.  Women are, after all, emotional and have the ability to create amazing physical symptoms solely from their minds.  At the same time, women’s bodies are considered to be in a constant state of abnormality relative to men’s bodies.  The word ‘hysteria’ is etymologically related to the Latin word for uterus, which was long considered to be the site of women’s mental health problems, and hence its removal is called a hysterectomy [...]

‘Just get out and exercise’ or ‘just change your diet’ is fairly lousy advice for anyone who hasn’t been able to get out of bed. But as a society we still maintain the illusion that changes in hormones, brain chemistry, or the like are failures of self-control or willpower.

She also discusses the disproportionate burden laid on mothers of disabled children. Read the whole thing.

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.

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.

Seventeen pills of six different sorts, my 24-hour drug regimen.

I take six medications. Five of them — the antiepileptic, the antidepressant, the non-narcotic pain killer, the muscle relaxer, and the oral contraceptive — are covered through a mail-order service. I receive a 90-day supply in my mail box every three months. No hassle. If a prescription runs out, my doctor is notified electronically, he then sends the new script electronically, and everything proceeds as normal with absolutely no additional step required of me. The only thing I do is click on the check-out button on the web site every three months. That’s it. No calling. No physical piece of paper to pick up. No wait at a retail pharmacy. Just a click and several days’ wait.

There’s one other medication I take. That medication serves the exact same purpose as all five others: it relieves my pain so that I can get on with my daily functions. I take it regularly, just like all five others. I have been taking it regularly for over five years now for the same reason. But this medication is not covered by the mail order service, because it is not considered a “maintenance medication” — despite that it fills the exact same maintenance role all five others fill, just by a different mechanism.

So for this medication, I am only allowed a 30-day supply at a time, and no refills — a brand new script each fill, which requires my doctor’s input each time. I have to call my doctor no sooner than the exact day it was filled last month, unless it falls on a weekend in which case I might get away with calling up to 2 days early. Then I have to call back a couple days later to see if the script has been written. If it has, it is printed out, and I have to physically walk in to the office, stand in line to see a receptionist, have them take a copy of the script with my photo ID, sign and date the copy, and walk out with the script. Then I have to physically take it into a retail pharmacy, wait in line, hand it to the pharmacy technician, then wait the required time for it to be filled. If there are no problems with my insurance, I then must physically present myself and pay for the prescription. Then I can walk out the door with my medication.

(And this is the process with a doctor who’s relatively friendly about the matter.)

It is quite a different process and one overflowing with “veto points” — points at which any party involved can cause any sort of problem and stop the whole process up. Maybe my doctor is on vacation and won’t be back for two weeks. He is the only one in my clinic who will write this script. I can’t call earlier in anticipation of his absence; they will not write the script before the last runs out. In that case, I’m stuck until he comes back. Maybe the system spits out some sort of error, like the one I received today: I was told the script must be written by my original prescriber. Which is this doctor. So now they have to go back and ask for the script all over again, and he isn’t in til tomorrow, and it’s not guaranteed to go through smoothly then. There have been other errors.

Maybe the insurance says no. For any number of reasons; I’ve dealt with prior authorization errors, quantity limit errors, errors because my insurance has suddenly decided to list me as living in an assisted-living home and cannot fill a prescription if I am. Maybe the pharmacy hits a snag, like the time they would not fill a written prescription until 2 a.m. that night because the insurance company said so, even if we paid out of pocket without billing the insurance.

And I’m going to keep running into these issues, and I will run into new errors every few months. I may have solved the last problem, but there’s always something new to pop up. I can never rely on this medication being filled on-time. It simply does not happen the majority of the time. No matter how diligent I am, how patient I am, how clearly and politely I explain myself — or how despondent I get, how emotional I get when telling them but I cannot work without this medication, and I don’t have leave on this job, and I can’t afford to be fired for missing work. Or whatever other pickle I’m in at the moment. It doesn’t matter. I do everything right and there will still be regular problems in getting my medication filled on time.

I’m sure, by now, you’ve figured out that this particular medication is a narcotic pain killer — hydrocodone (generic for Vicodin). I take it for chronic pain. I have been taking it for over five years this way, with the doses varying between one-and-a-half per day and three per day. And the only medical trouble I have ever had on it is when there was an excessive delay in refill during a bad pain flare and I got to go through the withdrawal for two weeks. (And I can tell you from experience: hydrocodone withdrawal is nothing compared to Effexor withdrawal.)

Narcotic pain killers can be a valid option for chronic pain patients. They fill a void left by other treatments which still aren’t effective enough to address our symptoms, which can easily be disabling. As you can see, I take plenty of other medications. But if I want to be able to get up and do something, I still need the pain relief the hydrocodone provides. So I take it. Because I like to be able to get up and do things. Like make the bed in the morning and feed the cats and make myself lunch and possibly run errands. Or — you know — work. Those silly sorts of things.

Here’s the thing, though. In both common culture and the medical industry, chronic pain patients who take these medications to be able to perform everyday, ordinary tasks that currently-able people take for granted — like bathing or showering or washing dishes or dropping their kids off at school — are still constructed as an addict just looking to get high.

You could almost kind of expect that for the narcotics. Most people do not understand the distinction between addiction and dependence. (Which is, basically, the distinction between taking a medication for a medical purpose so that you can go on living your everyday life, vs. taking a medication when you have no medical need so that you can escape from your everyday life.) This distinction exists for a reason; developing a tolerance for a medication is not a bad thing in and of itself, and must be weighed against the benefits that medications brings to the person.

Addiction calls to mind, though, a life being torn down. Addiction calls to mind a person who is seeing the detriment of a drug outweighing the benefit. A person whose life is falling apart because of the drug.

A chronic pain patient taking a narcotic pain killer under the close supervision and guidance of a knowledgeable doctor is exactly the opposite: sie is a person whose life is coming back together because of the drug.

But this image is not easily shaken in people’s minds. And so the chronic pain patient is reimagined as the addict. Hir behaviors are twisted to fit the common conception of the addict. If sie ever lets out a drop of disappointment at having problems with accessing this medication which is helping to put hir life back together — that is seen as drug-seeking behavior. And if sie lets out any sort of relief at the feeling sie experiences after taking the pill and having the crushing weight lifted from hir muscles — that is seen as “getting a high.” Heaven forbid sie show any emotion beyond just relief — like perhaps pleasure or happiness — at being able to perform everyday functions again. And any moodiness or other undesirable behavior can be easily attributed to hir “addiction.”

What’s strange, I notice, is that this reimagining is applied not only to chronic pain patients who take narcotics — but to any chronic pain patients who takes any pain relieving drug.

Take, for example, the anti-epileptic I take. It is not a narcotic. It cannot be abused — that is, if you do not have a neurological pain disorder, it will not do anything for you. You can’t use it to get high, get low, or get anything — except a couple hundred dollars poorer every month.

The only way this pill does anything for you is if you have some sort of nerve problem. And even then, the effect isn’t a “high.” Rather, it levels your pain threshhold — brings it closer to “normal.” No artificial mood effects, no giddiness, no lift. Just level.

And I still see this medication treated very similarly. Patients who take it are described in the same terms you would describe a drug addict.

And it’s just one of many. Any drug that relieves pain for a person with chronic pain will be painted in the same strokes.

At issue, here, is the conventional wisdom that our pain is imagined, that it has no real basis, or even then that it isn’t as bad as we make it out to be. That is the belief that feeds this twisted construction.

Because if you are imagining your pain, there is nothing legitimate you could be getting out of that drug. And if you aren’t getting anything legitimate out of it, but you’re still taking it — and getting upset when you don’t have it — well, that’s classic addict behavior, isn’t it?

If our pain were recognized as real and legitimate — if those messed-up-in-so-many-ways Lyrica commercials didn’t start out with “My fibromyalgia pain is real!” — this wouldn’t happen as much. Because if our pain is real and legitimate, then it is real and legitimate to seek relief for it.

(Of course, that assumes that pharmaceuticals are accepted as a real and legitimate way to relieve that pain.)

But people are going to have trouble with that. They don’t want to accept our pain. They don’t want to admit that it is real. They want to keep believing that it must be imagined. Because then, they can comfort themselves, in that murky area beneath our conscious thought, that they would never end up in our situation. They could never end up with any sort of medical condition. And if they did, well, they know how to do everything right, so they would never be affected by it.

This is why they scoff at our assertions that our experiences are real. This is why our conditions are jokes to a great many people. This is why “fibromyalgia is bullshit” has been the leading search term to my blog. This is why they seek so desperately to deny that these drugs — any drug — could be having a legitimate effect on us. This is why they treat us like addicts. Because they can see how we might reasonably be having real pain, and they can see how these drugs might reasonably be legitimately relieving it, and they can see how we might reasonably be upset if we are consistently denied access to the one thing that allows us to live our lives the way we want to.

And if all that is reasonable, then — shit — they could wind up in the same place someday. And none of their can-do bootstrap individual determination could magically get them out of it.

Addicts we are, then.

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.)

An investigation by The Chicago Reporter found that Illinois is arguably the worst state in the nation for Black senior citizens seeking quality nursing home care. There is just one home in Illinois rated “excellent” by the federal government when more than 50 percent of the home’s residents are Black. In Illinois, these facilities get the worst federal ratings and on average have more violations than facilities where a majority of residents are white. And in Chicago, on average, these homes have more medical malpractice and personal injury lawsuits. People in white homes got better care than those in Black homes, even if both were poor.

The Reporter also found that the staff at Illinois’ black nursing homes spent less time daily with residents than staff at facilities where a majority of the residents are white. Of that time, Black residents got a smaller percentage of time with more-skilled registered nurses than facilities where the residents were white [...]

The Reporter analyzed the records of 15,724 nursing homes listed in the federal Nursing Home Compare ranking database to determine if disparities existed in the quality of care. The overall rating is based on a combination of health inspection results, staffing levels and how well each home performs on 10 important aspects of care, like how well residents maintain their ability to dress themselves and eat. The database includes homes that get some of their money from Medicaid or Medicare, more than 95 percent of all nursing homes.

The Reporter found that in Chicago, the worst rating—a one on a five-point scale—was given to 57 percent of Black nursing homes, compared with 11 percent of white nursing homes.

Excellent ratings were given to no black homes in Chicago and 29 percent of all homes with majority-white residents. White seniors had qualitatively better nursing home options than Black seniors—in some cases, even when facilities had the same owner [...]

The Reporter analyzed the ratings for Chicago homes where more than 75 percent of residents’ care was paid for by Medicaid. A quarter of white homes received an excellent rating, compared with none of the black homes. More than half of the Black homes received the worst rating, while 8 percent of white homes earned the same score [...]

“That’s blatant racism,” [state Rep. LaShawn Ford] said. “A lot of the times the owners of these nursing homes treat them [just] as a business. It has to be more of a mission than a business.”

It should be surprising, but it’s not. In just about any way you can identify, it appears that black people are receiving worse care than white people. We can talk about the causes — the value society has placed on particular qualities in a person, the significantly worse performance of for-profit homes — in this case, it even appears that the systemic effect of poverty (which black people suffer under disproportionately) made no difference; poor black people still received worse care than poor white people.

We can talk about support for independent living for people with disabilities, but that is a point where poverty — especially poverty extending deep into a person’s family, rather than individual poverty — would come into play and negatively affect people of color disproportionately.

Research has also shown that black patients receive worse medical care than white patients (this article focuses on diabetes care in particular; I am fairly sure I have seen research that demonstrated similar disparities in hospital care).

This is white privilege: even when you are aging and/or disabled, with all the trouble society gives you, your racial background is still giving you a hand up over those who do not share your privilege.

Thanks to Anna for the link.

(Cross-posted at Feministe.)

***

Allow me to indulge in a little bit of inside-hockey.

Hockey is a very physical sport. Part of this sport is “checking” or “hitting” – basically running into an opposing player in order to tie him up for some time so he can’t be out there making productive plays for his team. (Brooks Orpik demonstrates here, making four hits in a fifteen-second timespan in what has been called “The Shift.”)

And there is a concept in hockey we call “taking the hit to make the play.” This happens when a team is trying to set up an offensive play to get the puck to the net. A player on one team will let the other team’s defenseman hit him as he passes the puck to one of his other teammates so that, in a reverse-psychology sort of move, that defenseman is tied up in finishing his check, instead of out there defending the puck from his teammates.

So basically, you are accepting that physical hit because you know it will increase your offensive chances.

***

Things got a little out of hand in the comment thread on my post about the painkiller ban proposal.

I am still adapting to writing for a larger site. It is important to me that PWD feel safe commenting with their experiences. IME, they are much less likely to contribute if they have to carefully moderate their tone and make sure not to offend anyone who has privilege over them. They need to be able to speak candidly about what is going on in their lives without modifying their framing to be acceptable to the masses. And, as has been often discussed on Feministe, while “diplomacy” and 101 education are valuable things to do, if we allow it in every thread, it makes it impossible to take our discussion to a more advanced level.

I focus on making space for PWD. People who are currently not disabled are welcome as long as they realize that they are not the focus in this space. They, their needs, their ideas, their conceptions, are not the center in this space. They get every other space in the world for that. Every other space in the world is specifically built to suit them. If they are willing to relinquish that focus for a time, to listen to PWD, to do their due diligence in educating themselves on the background issues, and treating PWD with respect and accepting when PWD say they are doing something wrong or harmful — then they are welcome.

If they would rather insist that their ideas are more important, more valuable, more reasonable — if they would rather argue with PWD, if they would rather assert their understanding of the issues as clearly better/more reasonable/more in-touch/more important — if they will not listen to what PWD are telling them, accept criticism, and bite their tongue for one minute in their entire life to give deference to how PWD define their space and their experiences — then they are not welcome.

I am sure most of you are familiar with this framework. This is a feminist site. If we were speaking about men and women, rather than abled and disabled, would not most of you advocate the exact same definition of space?

Yesterday, we saw a lot of the latter comments in a thread where people with chronic pain were very clearly communicating the effect this policy would have on them. We saw comments that explained why the policy was being considered — as though the “why” hadn’t been laid out in the original post, reasonably, without argument from emotion.

And I responded angrily. The development already had me quite upset. PWD have to jump through so many hoops just to get barely-adequate care in this society. There are new restrictions every time you turn around. Commonly, you have to go through a dozen steps to get a product or service that’s watered-down and half the quality of what an abled person can access in one step. This is the second shift for the sick. It is very hard for many abled people to understand exactly how much we take on when we become disabled. The onus of access lies with the disabled person to correctly maneuver all the complicated and sometimes contradictory regulations, to take all the necessary steps in the right order at the right time, without mistake, because — like those long math problems in second grade — if you screw up one tiny thing, everything else might come tumbling down with you.

We had commenters “helpfully” inform us that we could just get a script for the narcotic agent alone and take Tylenol with it — and then come back defensively when PWD responded by saying but that puts an unfair burden on us when we are carrying such a heavy burden already.

I wish I’d had the energy to moderate that thread calmly, evenly, without emotion. To carefully explain to people why I believe what I do, why certain things are harmful even if they don’t seem so from the outside, why this regulation would be wrong and discriminatory, and why it is evidence of a larger problem in the structure of our society. To explain all of this in a measured, reasonable tone, with background and sourcing.

Academically.

I didn’t have that energy. I have chronic pain conditions. I am already pushing myself so hard to be able to write what I want to write while I’m guest blogging here, and handle the comments, on top of handling my life. Yeah, you know, I have one. I have to take my 14.5-lb feline leukemia positive cat into the vet for an exam and vaccinations to make sure he doesn’t catch some random infection and die. And take his 10lb sister in too to make sure she’s vaccinated, so she doesn’t end up catching it from him and getting sick herself. I have to help my husband prepare dinner. I have to clean the filthy bathroom. I have to take a shower, something that is enormously taxing on me. I have to run household errands. And, you know, visit with the in-laws for the holiday. All these things sap my energy.

And when my energy is not tip-top, my coherence suffers too. I have trouble putting words together. I get flustered.

So I’m not going to be able to respond reasonably every single time. Them’s the breaks.

Anger. Anger is a feminist issue. The anger argument is a tactic that the privileged party uses to shut down complaints from those lacking privilege. We recognize this when it is a man telling a woman she is too angry, hysterical, hostile, harridan/harpy/banshee/we all know the slurs. It is wrong. It is a way to simply dismiss the woman without having to actually pay attention to what she’s saying. It is taking advantage of the privilege you have over her.

I don’t give a flying shit whether that’s what you intend to do when you pull the anger argument on someone — anyone — a person of color, a disabled person, a queer person. This is well recognized in feminist theory; the argument that the unprivileged person is “too angry” and that people would be more receptive to their arguments if only they would state them sweetly, “you catch more flies with honey than vinegar” –

Don’t tell me you don’t recognize what bullshit that is when the non-privileged person is complaining about something that harms them, and the privileged person cries that they just can’t listen to you until you put it in such a way that soothes their ego.

Oops, I’m getting angry and unreasonable again, aren’t I?

So I responded angrily, mockingly, to comments that I thought were unproductive. I’ll give you a tip right now: last year I made sure to be calm and patient with a set of difficult commenters on one of my guest posts, and it went on for a hundred or so comments, before he gave up and began saying that I and other posters must just be depressed because we disagreed with him.

It did me a lot of good to engage patiently with that guy, mm? He walked away with respect for my argument, did he? No. He didn’t. He walked away the same as the opposing commenters walked away on yesterday’s post.

Anger is valid. Anger is a rational emotion in response to a world that is unjust. And to deny a person anger is to deny their humanity. It denies them the full range of human experience. It denies them the ability to process events in a natural, human way.

I wish I had been well enough to comment calm and patiently on yesterday’s post. I am being honest here. I wish I had been able to just explain diplomatically why I see things the way I do. Because that can be a valuable thing to do.

However, doing so can also transform that commenting space to one that – again – centers around the privileged person’s conception of the world. It forces other commenters to carefully frame their comments in a way that is palatable to the privileged person. And thus it completely shuts the door on a more advanced conversation about the issues affecting them.

No offense, but I’d rather shut the door on the privileged people’s protestations than on PWD’s ability to explore political theory relating to them. Sorry.

Oh: and pandas are cute.

***

My writing is, as a commenter described at one point, is a messy marriage of personal and political.

I write from a personal perspective, but I draw political conclusions from my experiences and observations, and those of other people like me.

It may not be a style of writing that appeals to everyone. It may not be palatable to the masses.But it is important.

I entertain abstract, academic style discussions. But I connect them to reality on the ground. This is vital. We can have as many cute little reasonable debates as we like, but if we never stop to pay attention to what people are actually experiencing in this world, what fucking good are we doing?

We all have different roles. And I know mine.

I bring my personal experience to the table. And there is a reason for it. And I am reminded of it every time a reader comments or emails me to tell me how similar their experiences are, and that they’ve never heard anyone affirm them before. They have never read something in a political context – and make no mistake, feminism is a political theory – that addresses their life.

People with disabilities are largely segregated from wider society. Institutionalization is alive and well today. And barriers to access keep many PWD stuck at home, unable to participate in all different aspects of society.

And many of us are out there, mixed among the wider population — but invisible. Our disibilities are not readily apparent. And therefore our experiences are invisible as well.

My writing aims to make those experiences visible. To expose them to the rest of the world. To force them in the faces of able-privileged folk. So they see that we exist. So they can no longer walk around under the impression that we are not among them.

When our experiences are invisible, our needs are not addressed. Society is already built around the needs of the currently able, to the exclusion of the rest of us. We have made some strides, but there’s still a long way to go. And part of that is making the rest of society realize that people with disabilities are all sorts. We are in wheelchairs and walkers, we use canes. We use medication and TENS units you can’t see. We use braces. We are on bed rest. We have assistant, we walk alone. There may be a visible physical difference or a noticeable behavioral difference. Or we may look and act just like an abled person.

Most of society has trouble recognizing this wide range of disability. When disability is recognized at all, it is within the narrow narratives that PWD have come to recognize: the pitiful/tragedic story, how awful it must be to be “half a person“, or the inspirational/supercrip story, watch in amazement as sie overcomes hir disability! There really isn’t room for any other kind of story in wider society — and yet our stories are so diverse. And so important.

That is why I tell my story. It is only one story. But there are many people like me – and they’re out there writing too. And I want to make sure our stories are visible. And my goal is to make them so visible that they can no longer be ignored.

Everybody needs to be exposed to the reality of living with a disability. Everyone needs to be exposed to what actually happens, in practice, in our lives. All the theoretical discussions in the world aren’t worth shit if we’re still left to die on the streets in large numbers.

Unfortunately, able-privileged spaces (that is to say, almost every space in the world) tend to entertain only those theoretical discussions. The academic, the abstract. To the exclusion of what is happening on the ground. Because that’s messy and hard to reconcile cleanly in a calm, level, reasonable way.

That’s why I tell my personal stories. Because there are lessons to be drawn from them.

The thing is, when I tell my personal stories, I expose myself to a society that is ignorant at best, actively hostile at worst. I expose myself to all the biases contained therein. I expose my self to the public, and everything it can bring.

I take the hit to make the play.

***

I handled yesterday’s thread imperfectly. And it exposed me to a set of people who took offense at my anger – yet found it completely appropriate to make insinuations about my character, my state of mind, and even my sobriety – in one case stating “…this kind of vehement, angry response in a discussion that is relevant to one’s ability to obtain an addictive substance seems eerily familiar to me, as someone who has lived with an addict for nine years. When a rational person suddenly behaves irrationally when his supply is threatened…”

You can find the discussion yourself, at the web site of one of the key commenters in that thread. Right now, I’m just hurting. I tried. I messed up. But fucking hell, I am putting myself on the line in hopes that maybe, in some small way, I can advance the conversation on this issue so that other people currently harmed by certain attitudes might some day see a better world — and maybe find a way to cope in the meantime.

And it hurts.

I’ll leave you with the words of Cara and Abby Jean.

The thing is

The thing is, most of us feminists know well enough that when an anti-choice man comes into a pro-choice woman’s space and tell her that she’s wrong on the subject of her own reproductive rights, there is, no matter his phrasing, nothing “polite” or “reasoned” about what he is doing.  Most of us feminists know perfectly well that the man is still arguing that the woman, the woman to whom he is speaking as well as all women, does not have a right to make decisions about her own body.  Most of us feminists know that when that man gets a negative response, and he counters with an argument about how the woman shouldn’t take it so personally, he is displaying privilege.  Most of us feminists know that there is nothing “abstract” about a woman’s right to bodily autonomy, and that it affects real women’s lives.  It’s not generally lost on us that most of those who spend time treating the “abortion debate” as an excuse to show off fancy rhetorical skills are men.  We generally know that when women point out that hey, this actually affects our lives, we are shot down with the admonishment to not be so “emotional” on the subject.  And we generally know that this is wrong, and hugely misogynistic.

But ah, it’s called “privilege” for a reason, isn’t it?  And so for many, many feminists, these simple, basic understandings that we lament so many men not getting, go out the window when talking about a different oppressed group.  And white feminists will tell women of color to stop being so emotional about the “objective” debate regarding whether or not something is racist.  And cis feminists will tell trans women to stop being so emotional about the “objective” discussion of whether or not their gender identities are legitimate.

And temporarily able-bodied feminists will tell women with disabilities to stop being so emotional about the “objective” discussion on whether or not their experiences are valid, and whether or not there is real reason for their concerns about decreased access to needed services.

And then they will fail to see why what they’re doing is wrong.  Because, well, that anti-choice guy, he’s an outsider.  But us, we’re all feminists around here!  And no other identity could possibly matter!  So we’re all friends!  And how could you dare treat the privileged, ignorant, sticking her foot in her mouth “friend,” the same way that you treat the privileged, ignorant, sticking his foot in his mouth “enemy”?  It’s so unreasonable!  They were just making a reasoned argument and demonstrating their rhetorical skills on this fascinating matter!  STOP BEING SO IRRATIONAL.

I am a person who is privileged in virtually every way other than her sex.  And this is exhausting, infuriating, and wildly depressing to me.  I can’t even begin to imagine the feelings of those women facing further oppressions, who are the actual objects of these patronizing diatribes about reason and logic, from supposed “friends” who know enough to know better.

it is so hard…

it is so hard for women to talk about their own lives and experiences without being attacked. even sharing those things with an audience expected to be mostly sypmathetic, or at least expected not to fashion the author’s own words into a weapon to attack the author herself, is a risky and sometimes very dangerous act.

a lot of these problems seem to stem from a reluctance to give any deference to the person’s own account of their lives and experiences. we think that our academic skills, our research and our logic, can give us full and complete insight into and understanding of an issue – regardless of whether it is something that could ever affect our lives.

but there are things that you cannot understand until you have lived them, cannot learn unless you are taught by people who have lived them. whether it be the amount of hassle and difficulty caused by adding another separate medication to an already complicated pain management regiment for a person with a disability, or how the timing of bus transportation can dramatically increase child care costs for working single mothers – these things are learned most effectively from those who have experienced them.

so to enter a space where a person is talking about their own experiences and to tell them they are wrong, that they will not be affected that way, that it is not that big a deal, and that you know so because of your research or your logic – that is the opposite of learning. that is affirmatively shutting down discussions which could lead to learning. and it makes it much less likely that the person with experience – the person without whom you cannot learn the essential details of the issue – will be willing to participate in such a discussion in the future.

The reason they give, at the end of the article: “the benefits of using the medication for pain relief at recommended doses outweighs the safety risks at this time.” If nothing else, it is somewhat encouraging. If this is their thinking on Darvon/Darvocet, we can hope that similar thinking will guide their decision on Vicodin/Percocet.

***

And according to the New York Times, the FDA

… is not required to follow the recommendations of its advisory panels, but it usually does.

Emphasis mine. In other words: the ball is rolling.

Vicodin and Percocet are two commonly-prescribed narcotic painkillers. They combine hydrocodone or oxycodone (respectively), the narcotic agent, with acetaminophen, brand name Tylenol.

Acetaminophen is coming under fire because abuse of the drug can lead to liver damage. The safe limit for acetaminophen has generally been regarded as 4,000mg per day. That translates to two extra-strength Tylenol (500mg each), four times a day (eight pills total). The dose of acetaminophen in various combination drugs varies, usually 325mg but ranging up to 750mg.

The panel voted against a ban on over-the-counter cold, flu and sinus relief medications, the vast majority which contain acetaminophen. Apparently these medications aren’t a concern, despite containing just as much acetaminophen and being available over-the-counter, where consumers do not have a doctor and pharmacist counseling them on how to take the medication.

This is not to deny that many practitioners — including, infamously, dentists — throw out prescriptions without a second thought. But the number of such practitioners is much lower than commonly perceived, and restrictions on narcotic painkillers will have a negative effect on chronic pain patients, who have to jump through an increasing number of hoops to obtain effective treatment.

I’m sure many people will jump in the comments to “inform” me that narcotic use for chronic pain is dangerous and inadvisable. This is simply wrong; when there is a medical professional overseeing a patient’s pain management regimen, carefully monitoring the use of such drugs, these pain killers can make an enormous difference in a patient’s quality of life. Dosages will have to be watched, as patients develop a tolerance to narcotics over time, but this does not preclude the use of narcotics whatsoever.

In medical terminology, there is a distinction between addiction and dependence. Generally, addiction occurs when a person takes a drug for which they have no medical need, whereas dependence is a patient taking that same drug for a medical purpose. Another way of putting it is that an addicted person uses a drug to escape from life, whereas a dependent person uses a drug to get on with their life.

With knowledge of the potential for dependence in mind, painkillers are a viable treatment option for chronic pain patients. Many patients do not respond to other available treatments (whether pharmaceutical or otherwise), or they do but those improvements ultimately still leave them in considerable pain. The range of available treatments today may not work for every patient — there may be other conditions and considerations that would make one drug dangerous, or another drug might trigger severe side effects, or another drug may just plain not work for them. Every body is different; every person’s body chemistry will interact differently with a certain drug. Considering this, it is important to leave open the option of using narcotic painkillers for chronic pain patients.

They are, obviously, not a first line treatment! Trust me, we know that. But that doesn’t mean it cannot therefore be an available treatment at all.

One article attempts to assuage the concerns of such patients, in a somewhat patronizing tone. A doctor says that practitioners can simply prescribe acetaminophen-free narcotics and advise the patient to take a Tylenol with it. If a practitioner is going to advise that much to a patient, why can’t sie just advise, “Don’t take more than X per day, and check with us before taking any over-the-counter medication,” in the first place? If it’s as simple as telling a doctor to advise a patient on how best to take the medication — why can’t they just do that, instead of taking away an important treatment option for patients?

It is telling, I think, that they voted to ban the pain killers but not the Nyquil. They see narcotic users as other people — the poor people, the drug addicts and traffickers. But the family next door uses Nyquil. The family next door is trusted to be responsible. The Other People are not.

I have been using Vicodin as a part of my pain management routine for almost seven years. As I wrote in a letter to my doctor earlier this year:

The adjustments we made to my other medications were the driving force behind my ability to take on an increasing amount of work – from six hours a week as a restaurant greeter when I met [my doctor], to 20-30 hours a week retail sales, and now to a full-time nine-to-five clerical job. Up until two months ago, for all the change that I went through physically, my hydrocodone usage only went up a small amount – from 1.5/day average to 2/day average.

And I do not rely solely on medication to treat my pain and fatigue. I practice good sleep hygiene: I make sure to go to bed around the same time every night and wake up around the same time every morning, allowing myself 8-9 hours of uninterrupted sleep. (I know that is actually more than recommended for healthy adults, but because research shows fibromyalgia symptoms seem to stem from an interrupted sleep cycle, making the sleep less restful, I need a little more to make up for it.) I make my sleeping environment comfortable in terms of light, sound, and temperature. I maintain a very careful balance of physical activity and rest. I do my best to get light but regular low-impact exercise – I’ve done everything from light walking to weight lifting to Pilates. I am careful to identify things that trigger pain, such as clothing that is too restrictive around the shoulders and hips or certain chemical odors, and then eliminate them from my life to whatever extent possible. I have been through cognitive-behavioral therapy; I have been to stress-management workshops; I know breathing exercises and other coping strategies. I have an entire collection of heating pads at home – portable ones, electric, moist microwavable pads – which I use quite frequently. Dr. H recently helped me procure a TENS unit to treat my recurrent back pain, which has been the single biggest factor in my ability to work this new full-time job. It reduces my pain significantly and thus reduces my use of the pain killers.

I have also tried a variety of other techniques and treatments that just ended up not working for me. Those listed above are those that turned out to work, and each is an important and indispensable part of managing my chronic pain.

Vicodin is only one part of my pain management routine. But one that would significantly affect me if it were taken away. I would have to quit my job. I would do a lot less work around the house — and my husband already does more than half, even when I’m not working. I would be confined to my house, as the amount of trips outside (grocery shopping, doctor appointments, etc.) would be significantly harder on me. As I explained a bit further down in that letter:

I explained to him that, for everything my other medications do for my pain, there are many times where if I want to be able to get up and do something, I need the pain killers. It not only kills the pain, so to speak, but it gives me energy – to try to describe it more accurately, it lifts a weight from my body, so that I can move more freely. Without it, unless I have been doing absolutely nothing but resting for days previous, just moving, lifting my legs and reaching my arms and pushing my body through the air, is cause for a sort of generalized, all-over ache. I feel it in the skin and muscles of whichever part I am trying to move. With the pain killers, that feeling is gone. I can stand up and walk; I can reach to take something off a shelf; I can write; I can lift and carry, and the only pain I will feel is if I actually do strain anything unnaturally.

So whether I’m wanting to fill the cats’ dish with kibble, or gather my dirty clothes to take down to the laundry room, or go out to the grocery store for some milk and bread, I need those pain killers. Whether I’m wanting to sit in the shower for fifteen minutes, or dry my hair, or prepare myself a meal, I need those pain killers. For these activities, I don’t need them every time. But I also cannot go without them every time. I need them some of the time, to keep that careful balance so that I am not so overwhelmed with pain that I find myself unable to do those things at all.

You can see how this would extend to work activities. If I want to get myself ready in the morning so that I am presentable and professional; if I want to alphabetize the files and begin to put them away; if I want to walk around to the various places I need to go inside my workplace throughout the day, fetching applications and delivering mail – to do these things, I need the pain killers. And because this work is regular and sustained, I will need them more regularly than I do for the home care tasks mentioned above.

This letter was written after a nasty incident with another doctor in my clinic. She gave me all of twenty seconds to explain why I was there before launching into a very loud diatribe about how I was crazy and ruining my life, and she was going to send me to rehab. (If you want that story, it’s highlighted in blue here. The yellow blocks are the purely-necessary background, since the letter is so long.)

That left me with no option but to go to the emergency room to ask for a Vicodin script. The experience was humiliating. Nurses outside my exam room joked to each other “We should put a sign on the door that says ‘We are all out of Vicodin, go somewhere else.’” The doctor who saw me gave me a long and patronizing lecture, telling me that I should be seeing a pain specialist and not having my primary doctor coordinate my care, guilting me for using the stuff at all, with many dramatic sighs and furrowing of the brow.

Before he gave me my prescription, I asked if he had a recommendation for a pain specialist, and he gave me one. I called them up. They requested that I send over my medical records before they would make an appointment, because the doctor sat down to read them for every new patient so that he could establish a customized treatment plan. I did as they requested and two days later, I got a call. His receptionist told me that they were not going to schedule me an appointment, because the doctor said “There’s nothing else we can really do for you” and said to continue doing what I was already doing with my primary doctor.

In other words, I was doing it right.

This is the kind of regular obstactles that are set in the path of chronic pain patients who use these medications. And it seems like every time we turn around, there’s another restriction.

It is good that they are turning their attention to the dangers inherent in acetaminophen. But there are ways to address this without making life that much harder for another set of people. Am I going to have to take a higher dose of narcotics now because they want to “protect” me from the danger? I don’t particularly want to.

Hat tip to Annaham.

(Cross-posted at Feministe.)

Cara posted about it at Feministe. And we do love Cara, but the thread there (and at Hoyden About Town) quickly devolved into fail, several directions of fail in fact. I just want to walk you guys a little further in one of those directions with me.

Candace left the following comment:

As a PWD, just know that I agree with almost all of what you’ve said, Lillith. I’ve seen sooo many instances of abuse, most often of people carrying their many shopping bags out of the huge mall and then pulling out of their accessible parking space.

I understand why it is so viscerally frustrating to watch seemingly able-bodied people act totally able-bodied while also visibly taking advantage of privileges meant for disabled people. I think everybody gets that, on a deep level. But this feeling comes from many places within us, and uncomfortable though it may be to admit, most are rooted in internalized ableism.

Coldneedles responded:

I have chronic fatigue syndrome. I don’t currently need accessible parking, but I can imagine it in the future because I’ve been declining quite rapidly. I could then very well be your so called “abuser” of the system.

Want to know why?

Well, if I live by myself I will need to go shopping at some point. To do frivilous things like buying food and clothing. I will calculate that I will suffer more if I don’t carry heavy bags. because then I will need to come back and use my precious energy on more driving, walking and even getting presentable so I can go out. Once I get back from the mall I will collapse into bed and not be able to do anything for the rest on the day, possibly even the next two will be affected.

But you wouldn’t see that. Neither would you see the things I have to do to make sure I can go- resting before hand, taking medication, taking rest breaks in the mall itself.

Would it be better if I was denied an accessible parking space, merely because I can technically carry heavy bags? Even if that meant I could not go to the mall to supply my basic needs? Even if that meant public places were inaccesible to me?

Coldneedles, you are not the only one.

Before I moved out here to Pennsylvania, I spent a year living on my own in southern California, attending Cal State Fullerton in Orange County. Ultimately, that didn’t work out for me, but I put up a good fight before bowing out.

I spent my first six weeks in the dorms before being kicked out, because they provided no priority access to housing for students with disabilities or distant students (CSUF was four hours from my hometown of Visalia), with 800 bedspaces for a school of over 38,000 at the time. And then I moved to an apartment about five miles away, in Orange. I began school that year in June, and was without a car until the end of September, leaving me dependent on the public transportation system. In Orange County, that meant the buses. I’ve written about the experience before, here.

So to get food, I had to use the buses. The nearest bus stops were about a mile away from my apartment either way. Then it was a short ride down the street — about a mile — to the nearest grocery store. Then, the walk around the grocery store, and then making my way back to the bus stop — through the bus ride — and the walk back to my apartment from there — now carrying all those groceries.

My disability is, and was, invisible. I managed to make those trips for those first few months. I wouldn’t've made it as long as I did if I didn’t eventually get that car, though.

I had to make a calculation, every time: 1) how much can I reasonably carry? and 2) how often can I make this trip?

If I carried less, that made the trip easier. But it meant I was going to have to make that trip again much sooner, and overall more often. Which would end up dragging down my physical health much further. But there was a limit on how much I still could carry. And if I tried to overstuff my tired arms to keep from returning too soon, it made my condition considerably worse in the short-term and only marginally better in the long-term.

This also meant I had to buy many more processed and boxed foods, because I couldn’t get too much that could be outside the refrigerator or freezer for more than the hour or so it took me to get home (between bus connections and the walks), and because I only had so much energy to prepare food for myself when I was devoting all this energy just to buying the food and getting it home. And, of course, that meant poorer nutrition, which didn’t help my physical state much either.

It was a calculation I was destined to lose, pretty much.

So yes, you might have seen me — a tall, slim, healthy-looking 20-year-old woman with no visible deformities who walks upright with a normal gait — carrying bags of groceries and walking a considerable distance with them, including up the flight of stairs to my second-story apartment. That doesn’t mean I wasn’t disabled.

You also didn’t see me slump those bags to the floor at the doorway, with only just enough care to keep them out of the door’s way so I could slam it shut as I slumped my tired body to the floor/couch/bed, and resting a few minutes before putting away what had to be kept cold but leaving the rest for several hours later, when I had rested more and finally recovered enough to get up and move around again.

This is a calculation I go through every single day of my life. How much work do I take on, and how do I pace it?

Take today. The cats’ litter box desperately needs changed, but I don’t have any litter left. And I need new tights for a job interview tomorrow morning. So I had to go out. And I went to Wal-Mart. Because Wal-Mart had both tights and kitty litter. And it wasn’t going to do workers any better for me to drive to PetSmart and then to JC Penney or Kohls, the two choice’s I’d've had otherwise, than to get those things at Wal-Mart. So I went to fucking Wal-Mart.

And when I got there, I took a normal parking spot. And it was a fucking mistake. I do my best not to use my disabled placard unless I know that I absolutely need it, because there are never enough spaces, and I don’t know who else might come along who might need that proximity parking more than I do, and I feel guilty about it. Plus I like to avoid the glares from people when they see that young slim white chick step out of her bright red two-door with a sun roof and a spoiler on the back (which was the best car available to us in a hurry when I totaled our old beige sedan a year and a half ago) with that blue disabled placard hung from the rear view. The less I deal with that shit, the better.

So I parked about fifteen spots farther away than I would’ve parked with the disabled placard. And I got out of my car and walked in the door. And there were no carts.

I laughed about it with the couple right in front of me. They picked up a basket. I didn’t bother, because the litter wasn’t going to fit in it.

I could have walked all the way to the other end of the store to get a cart, or gone exploring the parking lot for a stray one. But that was a lot of walking I honestly did not feel I could do — so I decided I’d just get the cat litter last so I didn’t have to carry it around the store. And that was going to be a serious physical burden on me. But it was the least physical burdensome option I had available to me right then.

So I walked over to the “intimates” section in the middle of the store and grabbed a box of pantyhose, then trekked back to the side of the store I started at.

I also need some new hair stuff (which is as much a matter of comfort as it is of looks). And I know my husband hates sitting there while I look over all the different stuff that’s available and compare ingredients and compare prices and so forth. It can take me a little while. So I figured, because the hair-stuff aisle was right next to the cat-litter aisle, I would use this time to do my comparison shopping. No one else was in the aisle when I walked around the corner, and I kneeled down where the stuff I wanted to look at was, and started looking.

At that point, a middle-aged woman pushing a somewhat older woman in a wheelchair came in. And behind her, another woman pushing another woman in a wheelchair. The second said “excuse me” and I looked up, ready to straighten and move out of the way, but it turned out she was merely teasing the first couple of women, whom they apparently knew.

The assistant women (so to speak) strolled the older women down the aisle, asking “Do you prefer any certain brand?” and picking one thing up to show them, and so on. And it made me grateful that, at least for now, I can do that sort of comparison-shopping without having to ask someone else to fetch the things for me — because I know myself, and I know I’d feel too guilty and “prideful” asking for something like that. Those are the sort of situations where I throw my hands in the air and deal without — whether it’s something Really Important that is actually going to affect me quite negatively, or whether it’s looking for new hair-stuff, or whether it’s trying on clothes so I can look the way *I* want to — because that little voice in the back of my head starts repeating, “burden”… and I don’t feel like I have a right to any of those things, the minute someone else has to do anything for me to have it.

And I couldn’t help but feel guilty, in the middle of this conversation: I, the slim young girl, standing there between two boomer-age women in wheelchairs, trying my best to give them space and not get in their way — and I just wanted so much to be known as disabled, too.

I was finished perusing, for the most part, so I rounded the corner back to the cat litter and grabbed the small box — which costs me more money, but I can’t handle the giant pail, even if my husband carries it in and out for me, because it’s too heavy to lift and pour from when I’m actually doing the box. But the “small” box was still 21lbs.

And as I shoved the pantyhose under my left arm, and picked up the box of cat litter and started walking, the first couple of ladies also rounded the corner. And I had to say “excuse me” because we almost ran into each other.

And oh God: having just wanted to connect to these two women, to be recognized as disabled, too — here I am carrying a very heavy box of cat litter in my arms, without a cart or anything, right in front of them. And I thought: if I had made any mention of my disability before, what would they be thinking of me? Right now, it was just “able-bodied young girl.” But if I had, would it now be, “Faker“? “Abuser“? “Oh my God, I can’t believe she has the nerve to claim to be disabled, there she is carrying an awkwardly shaped twenty pound box with no assistance, just look at her“?

Me, a few days ago on a “good day” with my hair done and dressed up, and then today, with my hair pulled back in the first shirt and pants I picked up.

I made a beeline for the checkout lines, trying to maneuver between crowds of people without having to stop or stray too far from my path. And there was only one express checkout line open on this side of the store, and there were four people waiting in that line and nowhere to set this box down. So I went to the nearest regular line, where I could set the litter box down on the belt behind two women’s cartfulls of groceries, and stand there longer than I’d objectively have been standing in the checkout line — but without somewhere to set this box down. (Lifting from the ground is simply not feasible for me, period.)

These are the sorts of little tradeoffs people with chronic illness make all the time. I was so flushed and in so much pain at this point, standing there for five minutes longer actually hurt me considerably. But it was less hurt than I’d've sustained the other way.

So I waited, then it was my turn, and when the cashier didn’t give any indication of an intent to move the litter from the belt to the bagging area, I laughed lightly and said “Yeah, leave that there. I just couldn’t stand in the express lane holding this, I needed to set it down. There were no carts when I came in…”

Why did I feel like I had to justify myself?

So I swiped the credit card, put the bag with the pantyhose in it over my arm, took a breath and hefted the box up to my chest again. And I made a straight line toward the exit. And now, there were eight or so carts in the cart area. So I plopped my purchases down in the cart, to take out to my car. Which was about five times as far a walk (from store entrance to car) than if I’d have used that disabled spot…

And when I got to my car, of course, guess what was waiting there for me?

So: I was a seemingly healthy twenty-three-year-old who drove herself to the store, picked up that twenty pound box and carried it to the checkout line and then out the door. Can you imagine what people would say if they saw me carry that box straight to my blue-line parking spot?

I am a disabled woman. Just because you don’t see it doesn’t mean it isn’t there.

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.

Our focus is often (and should be) on the women targeted by this hate, the women who suffer under this stream of threat and this actuality of violence. It should be focused on the actors and co-conspirators as well. Aside from those who take direct part in that hate or violence, another important piece of this is the effects of this misogyny upon the male in general. What misogyny does to the male identity and psyche and sense of peace and self-love. After all, the Female is not hated in a vacuum. So, too, is the Feminine, entire. And that cannot be walled off to one gender. This loathing, this hatred points back to what we know to be part of our natural being.

Men (as boys) are “asked” to join the oppression (under great threat of both social humiliation and physical violence and over and over, too) and to do this of course, we must snuff out/suppress the Feminine in ourselves. This is, of course, a great pain and loss to a human. And as this loss cannot be mourned by implied decree, this pain becomes a bitter, perverse mess that is blind to itself. And so men not only join the hate against women, but they then envy women for their freedom (to still be allowed) to be expressive, emotive, beautiful, affectionate, relaxed, vulnerable. And the loathing to self-loathing ties to envy ties to sorrow and loss and is given ground, and men are emotionally insane when modeled as instructed. And they act out this insanity even when they don’t know why. It is because they have too often been prevented from even knowing who they are to begin with.

…

For if a man cannot love the feminine aspect of himself, nor can he love a woman. And if he is hiding from that half of himself, he cannot fully see a woman. And if he would abdicate half his power, he is weak to the point of failing.

…

Because Colonization (and Patriarchy, too) are about control. And thus, Prop H8. And thus stiff collars and the Western Modes of acceptable and authoritative dress. And thus stark unforgivable lines. And thus dichotomized stances and laws that no person lives under comfortably and organically, unless they crave unnatural and aggravating wires strapping them down to the earth, making up for all the strength they have abdicated and would have used to guide and know themselves otherwise….

even after death
they stuff our bodies into boxes …

– mscripchick

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

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

– commenter Isabel

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

– commenter Eve

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

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

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

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

– Veralidaine

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

– Adele Carpenter

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

– Wheelchair Dancer

Many accessibility solutions are structural; they require collective action — constructing spaces such that wheelchairs can be used within them; hiring interpreters and providing caption services… these are not actions that can be undertaken by a single person.

What is unfortunate about this, though, is that it relieves the fully-abled individual of hir responsibility to hir disabled counterparts. It means the fully-abled individual can safely get away with never thinking about disability, and the connection between societal access and hir actions specifically, at all. Sie never has to consider how her attitudes and behaviors very really shape the environment of hir peers. Sie never has to stop and think, how does what I am doing affect those around me, and how can I change that to make things better for them?

When all solutions are collective, your own actions become invisible. Your contribution to the world around you becomes invisible. The power you hold over other people becomes invisible. Your status as part of the problem becomes invisible.

So let’s be clear — YOU ARE PART OF THE PROBLEM. And there is no instant solution, no magic words that can make that “go away.”

But what can you do?

I thought of what I think is an illustrative example the other day.

When I was attending college, I had a lot of walking to do — at least a mile from my dorm to each class, and of course the walking in between. It was exhausting, and it was one of the major factors that led me to drop out the first time.

One of my classes was on the sixth floor of the humanities building. Another was on the fifth floor of the math and science building. And I had several choices on how to reach those points:

1. The elevator.

2. The escalator (in the math building).

3. The stairs.

Here’s the irony: the only accessible solution was the stairs.

I have a physical disability. That disability is also invisible. I can climb stairs, but when I do it precludes any remotely physical activity (up to and including sitting upright) for a couple days, compounded the more flights I have to climb.

This was not teneble, not when I had to do this three times a week, and that doesn’t even include the energy required to walk to the building in the first place, to sit in the hard uncomfortable chair for an hour taking notes, and the energy I needed to do the home assignments, projects, and studying necessary for the class. And that doesn’t account for my four other classes!

So: Why couldn’t I use the elevator?

Well, because everyone else was using the elevator — so many people that there was a long line and usually a 15-20 minute wait before you could step foot in one.

Again, I have an invisible disability. I could have pushed to the front of the crowd every day, jostling my way through dozens of people to weasel my way in the door. And that would have made me kind of an asshole, you know?

So what do I say? “EXCUSE ME, I’M DISABLED, I NEED TO GET IN.” And everybody would turn to look at my lanky eighteen year old body, with no visible deformities, no mobility aids or other assistive devices or personal aide or caretakers, having walked in the front door just fine. And then everybody would be thinking that I was kind of really an asshole.

Complicating things is that at the time, my severe anxiety was undiagnosed and untreated. There was no way I could have even squeaked out a humble “excuse me,” much less forced my way through the crowd, much less shouted for all to hear that they needed to get out of my way and give me “special treatment.” Oooh, how I loathed special treatment. It made me feel like I was, you know. Disabled. Not normal.

Anyway.

This crowd existed in front of every elevator in every building on campus. Not all of the people waiting at that elevator were healthy enough to take the stairs. There were surely others with invisible illnesses like me, and others yet who just weren’t in the greatest shape, and so on. But the majority of those folks took the elevator because it was there. And those folks are the ones who made my life, and my participation in society, that much harder back then.

So: Why couldn’t I use the escalator?

Here’s a different problem. A lot of kids used the escalator. An escalator, as you know, is basically a revolving set of stairs that moves upward, so that you don’t have to do any climbing to get up to the next floor.

But here’s the problem. Everyone who took the escalator? Walked up it.

Everyone.

Now, if I wasn’t going to be climbing the stairs, why the hell would I go and climb the escalator? The entire point is to spare me that climb, right?

But I couldn’t use it that way. If I stood still on a single step, that would clog up the line of kids studiously climbing, climbing. They were narrow enough for two small people to stand side by side, but then not everyone is small, and we also had to carry our bulky book bags and such with us. So if one person stays still, there is a bottleneck effect — only a trickle of people can squeeze through, and everyone else gets stuck behind you standing still.

Assuming everyone in that crowd is healthy, someone who stands like that and creates that kind of jam is, again, kind of an asshole — right? So what was I supposed to say? “I’m disabled, sorry.” While everyone stares at the back of my entirely healthy-looking body for the next few minutes.

Right.

So: what was I left with? Well. The stairs were pretty free. Maybe I could have started to carry a cane, just to visually signal to people that I was sick. Even though I didn’t need that cane and wouldn’t know what to do with it. Do I hunch myself over, tousle my hair and do my best to act like I’m ninety years old and barely hanging on? Just so people would maybe, just maybe, believe me?

Or maybe… maybe everyone else involved could have stopped and thought about how their actions were affecting other people. Because I sure as hell wasn’t the only one facing this dilemma.

Just because the elevators and escalators existed did not mean they were therefore accessible to the people who needed them. Because accessibility is more than structural. It also counts on the actions of each individual.

Yes, you are part of the problem. There are times where you are in the way, where your actions are creating difficulties in someone else’s life. And you probably can’t even see it. But, you know — maybe you would — if you started looking.