For the purposes of this post, I would like to remind everyone that the range of disability includes people who are mentally ill, paralyzed, Blind, Deaf, permanently injured, autistic, physically disfigured, with compromised immune systems or disordered speech or chronic pain or cognitive impairments, and many, many others. Disabilities may be fatal or not, may be degenerative or not, may be apparent or not. Being painful, fatal, stigmatized, or poorly understood does not mean that life is not worth living, and I will not tolerate any attempts to enforce a hierarchy of disability; there is no category of Especially Bad Disability that destroys any chance of worthy life.

Blog for Choice Day 2010

Have you ever participated in the stigmatizing of pregnncy, childbirth and childrearing when the parent, child, or both have, or could have or obtain, disabilities?

Have you ever participated in the cultural narratives that say:

• Older women should not have children because their children are more likely to have a disability
• Women with disabilities should avoid having children because their children might also have a disability, and it would be wrong, unjust and cruel to give birth to a child that is not in perfect health
• Women with disabilities should avoid having children because only temporarily-abled women can properly parent a child, or being a mother with a disability would somehow deprive the child of necessary experiences or put a burden on the child
• Women with disabilities should avoid having children because they are more likely to be poor and need public assistance, and their children would also be more likely to use public assistance in the future, resulting in a drain on temporarily-abled taxpayers
• Women with disabilities would be selfish to have children, and to do so would contribute to environmental destruction, economic decline, and even degradation of the human species, and they and their children would be less valuable members of society because of their lack of perfect health
• It would be a tragedy to have a disabled child, disabled children are less desirable than temporarily-abled children
• Life with a disability is inherently worse than life without one; life without a disability is the baseline by which all life should be measured, so of course to have a disability would be a negative and would make a person’s life worse
• Disabled children are a burden on their temporarily abled parents, more so than any other child would be, and this is because of the child’s disability rather than because of the lack of support and affirmation throughout all levels of society for PWD and their loved ones
• Of course it is more desirable for a child to be perfectly healthy than to have some sort of medical imperfection, and those medical imperfections are a big stress and hassle on the temporarily abled people around the child, and there is something wrong with the child for failing to meet an impossible standard of perfection
• Health and ability are objective concepts and our current cultural wisdom on them are completely right and the medical industry that puts them forth is infallible; our ideas about health and ability are the only right way to look at things and can be universally applied
• To violate those cultural ideas means that you are inherently flawed
• The answer to all of this is to go to excessive lengths to avoid ever having, or being around someone who has, health problems, up to and including letting the least healthy die off or be terminated before they can live at all

You know what? I’ll bet you’ve all done it. Even the most radical disability activist has participated in some of these cultural tropes at some point in their lives.

But I’ll bet the vast majority of people “blogging for choice” would never think of disability as related to “choice” issues, and if they did, it would be for the right of temporarily-abled higher-class white Western women to terminate a pregnancy that has a more-than-minute chance of resulting in a less-than-perfectly-healthy child.

This is why the “choice” framework fails. It fails all of us, but it particularly fails those of us who fail to meet society’s idea of the optimal person: the pale, thin, beautiful, and financially comfortable picture of perfect health. The person who never relies on others (no!), is “self-sufficient,” and isn’t likely to end up a burden on the important people.

The rest of us can “choose” to stop existing.

Do you really trust women? Or are you perfectly willing to override their choices if you feel they threaten your comfortable position in society?

And you expect me to think you’re any better for my rights and needs than pro-lifers, why?

(Cross-posted at FWD/Forward.)

Short background: Rush Limbaugh (link goes to Wikipedia article) is a US conservative radio talk show host who has risen to prominence in the US by inciting “controversy” after “controversy” with hateful rhetoric. He also went through an ordeal some time back for addiction to prescription painkillers, an incident that the US left likes to use against him. Recently he was rushed to the hospital again, which has spurred a new round of derision from US liberals.

Rush Limbaugh isn’t exactly a sympathetic character. His politics are vile and he makes a career out of escalating white male resentment into white male supremacy. And that causes real harm to real people who don’t meet the requirements to be part of Limbaugh’s He-Man Woman-Haterz Club.

How did he end up abusing prescription painkillers? I don’t know. Was he taking them for legitimate pain due to injury, surgery or a medical condition, and the usage got out of hand? Was he consciously using it as a recreational drug? I have to say I am still somewhat bitter about people who use the stuff I need to be able to get on with my daily life as a quick and easy “high,” ultimately making it harder to access needed medication. (But that is argument from emotion, mostly; I would posit that the real problem is a medical field and larger culture which does not take seriously the needs and concerns of chronic pain patients and is eager to punish people who step outside accepted boundaries.)

But even if he was just out for a high, I still feel unease when I see people use that angle to criticize him.

Because, here’s the thing… the same narrative that you are using to condemn this despicable figure is the narrative that is used to condemn me.

You are feeding, growing, reinforcing the same narrative that codes me as an abuser, that makes me out to be a good-for-nothing low-life, that makes it difficult for me to access the medication I need to be able to live my normal daily life.

When you laugh, joke, or rant about Limbaugh’s abuse of narcotics, you are lifting a page from the book of people who would call me a malingerer and interpret my behavior (frustration at barriers to access, agitation and self-advocacy to try to gain access) as signs of addiction. People who would, in the same breath, chastise me for “making it harder for the real sufferers.” (See why my bitterness about recreational use isn’t actually serving the right purpose, in the end?)

Maybe you don’t really think this way. But maybe the people laughing at your joke do.

And maybe, you just made them feel a little bit safer in their scaremongering about “addiction” and deliberate attempts to make life harder for us.

Scoffing at Limbaugh’s hypocrisy is one thing — but when your scoffing takes the form of a very common, quite harmful cultural prejudice — even when you don’t mean it to — it has real effects on real people’s lives. Sort of like that casual incitement that we hate Limbaugh for.

(Cross-posted at FWD/Forward.)

Oct 28, 2009 NOTE FOR NEW VISITORS: Please visit this post first (it’s short). Thanks.

***

[The amazing abbyjean sent me annotations. Annotations! So now: Open Letter To Feministing With Links. We proceed.]

This includes the contributors and the commentariat.

We have a problem. We have had a problem for a long, long time.

You traffick in ableism. Your entire site reeks of it. I have spoken with many disabled feminists who find it impossible to read and participate in your community. They feel excluded. The culture is thick with unexamined ableism. We encounter common slurs and problematic cultural concepts at every turn, and are met with hostility when we bring it up. Some people have wasted energy on emailing you, requesting that you address it, so that they might safely participate in the community. You never bothered to respond. To any of them.

You’ve lost a lot of readers this way. But I’m sure, because that’s the way it usually goes, you lose less readers due to ableism than you gain due to same — because you never challenge their privilege, in fact defend it, passively and actively.

That’s nice for you and all, but the rest of us would, at best, like to play too. As for the worst — we would deeply appreciate it if you would stop deliberately (and don’t you dare say otherwise, you have heard our complaints and ignored them, making your actions deliberate) reinforcing a culture which marginalizes us, leaves us vulnerable to violence (including sexual violence), ostracization, institutionalization and death.¹

I viewed enough of this happening at your site — (years ago, when I was just getting into the feminist blogosphere; disappointingly, you haven’t changed a single bit in the intervening years) — that I never even bothered trying with your site. I’d love to have been able to. But your site has never felt like a safe space for me. Ever. Exactly the opposite. Your site has felt like a hostile and scary place to myself and other women.

W-O-M-E-N.

You can read, right? Spell it with me.

You cannot claim to care about my condition as a woman if you refuse to address the discrimination I face as a disabled woman.

As far as “what issues affect women”: I am a woman. Presumably, feminists care about the oppression women face.

But you cannot address the oppression I, a woman, face, without addressing the oppression so graciously given me on the basis of my disability.

For example, I face discrimination in the workplace. But if we are only to address the male-female pay gap, and ignore the obstacles I face because I am disabled, then you are not helping me as a woman. I am still left behind, still oppressed, as a woman. All you have done is alleviated the issues which affect you. Which means you aren’t helping women; you are helping healthy, abled women exclusively.

This is the basic framework I work from in my feminism. I am not helping women if I am not also out there addressing classism, transphobia, racism, homophobia, and all of the other oppressions that women face.

The reason “Sean Bell is a feminist issue” is because you must address the oppression which killed him to be able to address the oppression of women. If you cannot address that oppression — even though it affected a man this time — you cannot help the women who are also facing that oppression.

And if feminists are ok with not helping women on that level, then feminism isn’t about helping women, it is about helping white women. (me@tumblr)

And I am sick and fucking tired of having to explain this to the likes of all of you. If you are not there to help me in the problems I face because of my disability, you are not helping me as a woman. I am a whole person, not fragmented little bits. You have to help all of me to help any of me.

And if you aren’t all-in, for helping ALL of me, you are therefore declaring that you are only interested in helping ABLED WOMEN. You can cut out this bullshit about being “feminist,” as though you are working on behalf of “women.” Because you aren’t, at that point, working on the basis of gender: you are working on the basis of women with a certain ability status. Period.

A few days ago, meloukhia at this ain’t livin’ heard us complaining, and got sick of it herself. So she posted her Open Letter to Feministing and began promoting it. And it got some attention.

Apparently, Courtney has emailed her back, as of this writing. They are “in the generalities stage.”

I have absolutely zero interest in personally emailing with any of you, but I want to make sure people know that we — disabled feminists — aren’t stupid enough to be placated with a generic private apology. And I want you to know this. What it is that I, one particular disabled feminist, want from you.

1. Just posting about ableism-in-general, while a huge step for you (considering you never engage with disability in even a token capacity), IS NOT ENOUGH.²

2. Feminists have a long history of only ever speaking the dreaded d-word when it comes to reproductive rights, particularly (almost exclusively) the right to an abortion. Yeah, I know, you thought this would be easy. THAT WILL NOT BE ENOUGH.

3. As far as I’m concerned, you are dead to the cause if you never put up a post addressing your own ableism. Not ableism-in-general. THOSE POSTS ARE STILL NECESSARY. BUT THEY ARE NOT ENOUGH TO ANSWER OUR CRIES. You must put up a post examining your own personal ableism, and particularly the ableism you deliberately condone in your comments section.

In your comments section, a few disgusting, prejudiced, DANGEROUS memes are repeated with not an ounce of pushback:

* that health can be obtained by Doing The Right Things (eating right, exercising, being upper-class privileged enough to live the perfect little high-class life that is correlated with that definition of “health”) and that if you don’t Do The Right Things, any conditions that come up are Your Own Damn Fault, Don’t Come Crying To Us For Help

* attitudes expressed that fat people, smokers, and sick people should be paying more for healthcare because their illness is dragging the abled world down

* that disability is an awful tragedy and disabled people deserve only your pity, never your respect, and who knows why disabled people are segregated away in decrepit institutions, it couldn’t be connected to the way we regard disability as the end of meaningful life as we know it, nuh uh

* that having a disabled child would be such an abomination they must be screened out at all costs, and there is nothing at all problematic with this oh no oh no (DISCLAIMER, FOR GOD’S SAKE, I DO NOT PROPOSE LIMITING WOMEN’S REPRODUCTIVE FREEDOM, BUT I DO THINK YOUR PRIVILEGED ASSES NEED TO CONSIDER YOUR COMPLICITY IN OTHER PEOPLE’S SUFFERING) ³

* that Disability Is Objectively Bad, everyone knows that, duh, who would ever want a disability, of course life is going to be worse with one, and that is just because disability is (of course) inherently awful, and could never (of course) be because we make it worse by the way we treat disability[4.
* Even more frightening, the number of women who are on antidepressants ... why the hell are they having children anyway ... fuck if you can't cope with life, how the hell does one expect to raise a child! http://www.feministing.com/archives/005359.html#comment-47387

* I do think that for the sake of society, people who's severe disability roots from their genes should be prevented from reproduction. I'm not sure what that means, and I know the slippery slope that kind of thought can lead to, but I think somehow it's the most utilitarian thing to do. Not to put a blow against the I Am Sam or anything, but I think some people really don't have the capacity to raise their kids (certainly there are plenty of non-disabled parents who fit this description), but my main concern is that the children are more likely to have those same disabilities. I think society's attitude should be to respect and accept the disabled but not to encourage its increase. Certainly we don't want to always be making decisions for people who can't make them for themselves, right? http://www.feministing.com/archives/007889.html#comment-107733]

* words like “lame” and “retard” and “cripple” and “crazy” are totally ok to use — and their conceptual meanings as well — because disability is objectively bad so it makes sense to use something objectively bad to say that something else is bad, or because no one ever uses that word that way anymore (that I hear, because I as an abled person am the ultimate arbiter of how often certain things are said to certain people, the vast majority of whom I never encounter because they are segregated away from me) and it has lost its derogatory connotation, or that I have a cousin who’s retarded and I love him to death so that means I’m allowed to use the word because that totally eliminates my abled privilege, or it’s just too much of an imposition to change my language and have to lose that one concept to express that is based on harmful prejudice, or or…[5.
LAME

* God. Jennifer's body looks soooo lame. The stupidity dripping from the trailers is so overwhelming, I can't even imagine too many dumb and sexist stereotypical males going to see it. http://www.feministing.com/archives/017815.html#comment-298306

* lame. So fucking lame. http://www.feministing.com/archives/011318.html#comment-182734

* Samhita, 11/07: “Forget immigration, reproductive rights, health care or any other issue we feminists are reading up on for the upcoming election. It is all about getting a hot chick in the white house as first lady. Does that not count potential first dude, Bill? Forget you men.style.com, you are totally lame.

In that thread, someone raises the problem, and another commenter dismisses: “It's been so long since "lame" was used for people with disabilties that I really don't think it's an issue anymore. Besids, it's used as a synonym for "loser", not "defective" (which also isn't a synonym for people with disabilities anymore).” http://www.feministing.com/archives/008086.html#comment-114144

* 1/07, Courtney headlines an article “Can I Get a L-A-M-E”. again, someone calls it out in comments but no response from mods, although mods respond to other posts. http://www.feministing.com/archives/006368.html

* “LAME. Excuse me while I barf in the corner.” http://www.feministing.com/archives/015410.html

someone calls it out in comments and response: “Please don't spread prescriptivist poppycock on any site.” http://www.feministing.com/archives/015410.html#comment-257102

* “Lame-ass beer ads are a dime a dozen.” http://www.feministing.com/archives/017741.html

RETARDED

* Victoria Beckham is so retarded, I think she almost belongs in that shopping bag. http://www.feministing.com/archives/008985.html#comment-144542

* Commenter asks “Am I retarded, or can't you reverse a tubal ligation?”http://www.feministing.com/archives/007454.html#comment-93573

response is “No, you're not retarded. There are two types of ligations…” later in thread, commenter raises, no mod response though mods active in thread.

* One commenter uses the term: “It's like when you try to control a teenager and shelter them from reality - when they go into the real world, they often rebel and make a lot of retarded decisions.” http://www.feministing.com/archives/014575.html#comment-239116,
only response is another commenter pre-ridiculing any response: “Uh-oh, you said "retarded!" Get ready to duck the flying tomatoes! :P” http://www.feministing.com/archives/014575.html#comment-239125

* “Lindsay Lohan doesn't have curves like Marilyn Monroe did so to even do this shoot was a retarded idea in the first place.” http://www.feministing.com/archives/008637.html

* “So still being able to marry but being offended by something has the same impact as two gay people not being able to marry? What are they, retarded?” http://www.feministing.com/archives/011095.html#comment-179668

CRIPPLE

* “but the idea of marriage cripples my aspirations in life.”  http://community.feministing.com/2009/07/what-to-do-when-you-want-to-ma.html#comment-282211

* “When you use satire against powerless people, as Limbaugh does, it is not only cruel, it’s profoundly vulgar. It is like kicking a cripple.” http://www.feministing.com/archives/006861.html#comment-73327

* Canadian reactions are a little different from American ones, very negative or hostile actions can really ruin you (Do not make fun of a cripple, or call someone a Kitten Eater, for instance). http://community.feministing.com/2009/04/women-prefer-polite-politician.html#comment-244108

* “I'm not sure this guy built a robot just to sexually abuse. I think he's an emotionally crippled individual who can't relate to the opposite sex.” http://www.feministing.com/archives/012670.html

CRAZY

* Jessica titles post “Fun with feminist flickr (crazy billboard edition)” http://www.feministing.com/archives/006229.html

* Vanessa titles post “Randall Terry’s Crazy Road Show” http://www.feministing.com/archives/017413.html

* Vanessa titles post “Sen. Tom Coburn's chief of staff reaches new level of crazy” http://www.feministing.com/archives/017876.html

* Jessica titles post “What Double Standards Drive you Crazy?” http://www.feministing.com/archives/007551.html

* “I would be all for the feminists for life if they weren't so schizophrenic about their positions. They won't take a position on birth control but they don't want women to have abortions.” http://www.feministing.com/archives/002804.html#comment-13883

(amandaw's note: good Lord, I can only imagine what you'd find if you searched for "insane" "loony/loonytunes/etc." "unhinged" "psycho" and so forth - again, it's not just the word that's the problem)]

* that if one person, especially a person who has a disability, says something isn’t hurtful or problematic, you can call the whole thing off, because all those other people who DO have a problem with it and have suffered the consequences of it just cease to exist, poof!

* the sense of supremacy over others because you are (choose any or none, thin, abled, upper class, pretty, educated) and fully abled, which makes you totes better than everyone else, but you never CONSCIOUSLY think that so it’s totally ok that you still avoid Those People whenever possible because they scare you or squick you out, almost like they make you uncomfortable realizing your position in life is never as certain as you like to pretend it is? — nah, couldn’t be, just because they’re weird and gross and like, different and stuff

That’s just to start.

This is all shit that goes down in your comments regularly. And it makes women (spell it with me, W-O-M-E-N) feel uncomfortable and unwelcome, especially when they speak up and have other people jump back defending the exclusionary language and concepts, stating that they don’t have a problem with it and therefore there is no problem with it, saying or implying that the challenger must be oversensitive, have an agenda, looking for things to get angry about, or just doesn’t understand that the person committing the exclusionary behavior is a Good Person and that should be good enough.

Well. It’s not good enough. You are not good enough. Your whole site is not good enough. It is going to take some major changes. You are going to have to put yourself on the line, do some serious reading, reflecting, digesting, and actually change how you think and act (and not just by saying “I believe it now!” — we aren’t stupid, we can tell when there has been a true change). You are going to have to criticize yourself and your fellow writers. And –  this is the fun part –

4. you are going to have to change your comment section. You will moderate and fight back against ableism (which you will recognize, because you have actually been making an effort to learn more than you do now, right?) from your own commenters. You will delete offensive comments and tell commenters to stay the fuck in line. And not just once. Every time. EVERY FUCKING TIME.

And don’t you dare cry that it takes up so much time. Because you’re already spending that time watching your space to protect the abled women in it.

We would love it if you would give us the same fucking courtesy.

See also: meloukhia: Open Letter to Feministing; Anna: Dear Feministing: Answer your email; Annaham: Confessions of a Reluctant Young White Feminist; Anna again: Anti-Oppression Linkspam; Chally: Feminism that doesn’t advance women is no feminism at all.

All annotations abbyjean’s except where noted in parenthesis.

From the O-R: Khalil Young, 13, and his sisters Kiara, 9, and Khammeelah, 4, tend to their patch of tomatoes this afternoon at (the garden)… Khalil 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.

Written originally for my stint at Feministe at the beginning of July; been working on it bit by bit ever since, but suddenly it has become topical again.

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?

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.

UPDATE, July 7: Via Lauredhel, the FDA has made a decision regarding pain pills Darvon and Darvocet, which are pain killers containing a different ingredient (propoxyphene, a pain killing ingredient related to methadone but less addicting) with similar concerns (accidental overdose). They have decided against a ban, but are imposing stronger warnings on the products.

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.

After getting kicked off my low-income health insurance at age 18, going several years uninsured and uninsurable, sticking out the 24 month wait after being approved for Social Security disability payments before I could join Medicare, and then losing those payments and that Medicare because I had the temerity to get married (according to our system, my husband is not an equal partner but, because I am disabled, my expected caretaker, thus removing the burden of care from the state), I finally got a taste of the insurance all those class-privileged people have — you know, employer-based insurance (that actually is insurance and not those fake “discount plans” or “you can pay us a premium, but we don’t actually cover anything a human being might need” scam plans that low-skill employers offer to give the appearance of being socially conscious).

I am lucky that my husband is employed by the state, and represented by a strong union, so his health care benefits are good.

I was upset when I had to transition from one side of provided-by-the-state care to the other, because it was considerable work for me and for my health care providers, but over time I have come to be immensely grateful for my husband’s benefits. Rather than filling 30-day supplies of my medications at retail pharmacies and, every month, running into some hang-up or another that left me without one of my medications, or having to space out my medications, for days or weeks at a time, I now receive all but one of my medications in full 90-day supplies (including four packs of birth control pills, not three!) with no hassle. I order the medications online, and if the prescription is run out, my doctor is notified, and he sends a new one in electronically, and everything proceeds as normal. My medications arrive in the mail within days. It is the easiest it has ever been for me.

So now I am free of what was probably the biggest burden I had to bear in obtaining reliable health care. The only medication I still receive a 30-day supply for is my Vicodin, which is not considered a “maintenance medication” (despite filling the same function as my Lyrica, tramadol, Effexor, cyclobenzaprine and Mircette) and thus must be filled retail. Even that process has been considerably smoothed since the insurance switch, though not devoid of problems entirely.

And now I never have to deal with obtaining a referral for anything that wasn’t a yearly checkup with my general provider. And I have a single insurer, rather than feeling guilty every time I handed over my four insurance cards to my doctors (my retail employer’s scammy discount non-plan, my Medicare plan, the separate HMO for my MAWD and then the MAWD itself) and knowing the billing hell they were going through just to get payment for their services.

Alas, though: my troubles are not over. My husband’s insurer, like so many other employer-based insurance groups, has become enamored of these “incentive programs” that are supposed to, you know, “provice incentives” for patients to “lead a healthier lifestyle!” Mainstream conservatives and liberals alike seem to love these things. It’s a way to pretend you’re addressing the God-awful fucked-up shabby mess that is the American health care system and its soaring costs, but without actually, you know, doing anything to make these patients healthier. Actually paying for the health care they could use? Pfah! No, just “incentivize” them to exercise more or stop smoking.

These “incentive” programs, more often than not, do not take the form of an actual positive incentive for such “good” behavior. More often, patients feel the effect of a negative punishment for not being the Super Fit And Healthy Ideal Able Body. They end up paying more in health care premiums (by losing out on a “discount” for being a successful participant) or losing their health insurance altogether. Or, they simply feel the burden of having to jump through hoops no able-normative person would ever have to — the second shift for the sick.

These incentive programs would not be worth the money and effort if there were not a stick behind that carrot, a way to enforce good health on the people. It should go without saying: health is not something that should be enforced.

My husband’s ensurer has a yearly health survey that all participants — including every covered family member — must participate in to be eligible for the lower premium. This is not a five minute survey; it is fairly involved. And I am always nervous about answering questions from my health insurance provider: more often than not, when I inform them of this problem or that — even those insignificant in the grand scheme of things — it results in a loss of coverage, increased cost, or additional steps I must complete to continue receiving the care that I do.

This nervousness comes, especially, from my time spent uninsurable on the individual market due to preexisting condition. When I was younger, I created and held steadfast to a very important rule with my own family: Information Equals Ammunition. In the insurance market, this rule is sadly just as applicable.

Every year, after taking the survey, my husband is informed that he is dangerously underweight and action needs to be taken to correct this state of being. My husband is 5′9″ tall and weighs around 120lbs. This is his natural state. He eats a healthy diet, he walks to work and back every day and gets a fair amount of exercise beside that. He inherited his very lanky body frame from his mother, who is even skinnier than he, and jokes that when she was pregnant she never actually gained weight; at the end of her pregnancies, she looked just like she does now, but with a basketball contained in her tum.

When my husband played football in high school, he was actively trying to gain weight both through diet and muscle-building exercise — and he plateaued at 140lbs. Now that he is not weight-lifting on a regular basis, he hovers around 120lb. This is a BMI of 17.7, barely more than I weighed when I was a teenager — the difference being that I was significantly undernourished, and he was more-than-properly-taken-care-of.

So once a year, he gets yelled at a bit about his weight. He is healthy in literally every other way, his one and only health concern being a minor bit of TMJ pain which he now has completely under control. But he does not fit the widely-understood able-bodied “norm,” and so Something Must Be Done!

I take the same survey, and of course I am provided with tips for stress reduction and admonishment to see a pain specialist. I am now very slightly overweight, so of course I am also admonished to “park further away!” and “take the steps instead of the elevator!”

Recently, I have been receiving messages on our home phone from our insurance company, encouraging me to call them for the opportunity to participate in an unnamed program, for unnamed rewards. These messages piss me off, so I ignore them, even though I know there is a strong possibility that it might mean our premiums would go up. I planned to contact them at some point or another, but it was not high on my list of priorities, and still they kept calling every other day.

Then I received a letter, in a tone that can only be described as a lament, that I had not responded and would I please pretty please call them, this time finally informing me that it was for their “Healthy Back Program.” Oh great, I thought. And I caved in and called.

The woman who answered gave me the spiel I expected. And my reply, in a sweet voice, was (closely paraphrased): “Yes, I have chronic pain from fibromyalgia and endometriosis,” and she replied with a somewhat disappointed “Oh” — but I interrupted to continue: “I went in last year for lower back pain, and I spent the entire year going through various programs and treatments to help it. I had to go under for a laparoscopy which led to being diagnosed with endometriosis, and I’ve now been through physical therapy and even have a personal TENS unit to address the pain.”

“Well, unfortunately that means you are not eligible for our program, because your pain is chronic…”

Mm-hm. I am sure you can hear my disappointment.

This is the same health insurance company which paid for all these tests and treatments and has on record exactly what my condition is, what the background is, what medications I am on and which treatments I am partaking in. I provided this information in the health survey. It is very clear that I have chronic pain conditions. But because I even mentioned low back pain — a common focal point for people who like to cry about “overdiagnosis” and “overtreatment” — I was immediately flagged and referred to this oh-so-special program.

It’s just one more little thing I have to fend off to be able to continue on my treatment course. Just like every time I visit a new doctor, counselor or other practitioner and have to patiently go over every disclaimer about why I am on this Vicodin and why I have this symptom and why this and why that, and that yes I am being closely monitored by competent doctors and am following my treatment course as prescribed would you please leave me the fuck alone so we can get on with things.

And it’s exhausting, always having to be at-the-ready to explain these things. It’s just exhausting in a way that no able-normative person will ever fully understand, period, and I am confident in asserting this. It just drains you, even though each of these encounters is small and relatively easy when considered individually. But it accumulates, it weighs on you, and the knowledge that you always have more to come — that is the worst of it.

This is what people with disabilities go through in a health-obsessed culture, a culture that sees personal health as a responsibility to the collective, and any person who in any way deviates from the designated health “norm” (which changes regularly and is not as science-and-reason-based as these people like to think) is failing their family, community and nation, that they are dragging them down — being a burden.

And we all know what the result is when disability, or any health abnormality, is constructed as a burden.