Tag Archives: ableism

Yes, it DOES make a difference

23 October, 2009blaming, i'm right here, media and pop culture, shaming, social attitudes, Uncategorizedableism, abuse, addiction, causation, characters with disabilities, chronic illness, chronic pain, chronic pain conditions, disability, disability in fiction, disabled characters, disclosure, drugs are bad mmm'kay, erasing, fibromyalgia, House M.D., invisibility, invisible disabilities, invisible disability, life, me, medications, myths and misconceptions, pain management, passing, personal, pop culture, privilege, problematic attitudes, shaming, social treatment, stereotypes, stories, television, things people say, workamandaw

(Cross-posted at three rivers fog.)

I wrote this yesterday in an extreme fog and do not have the spoons to rework and polish it. Apologies for the brainspill, but these days it’s the only option I have.

***

For background, see Ouyang Dan’s post on the problematic aspects of the TV show House. Don’t tell me that people realize this is fictional. Don’t tell me that people know how to maintain that separation. Some do. Many don’t. And they’re everywhere. At the bottom of the totem pole… and in positions of power over the very people they are prejudiced against.

***

I was called back to work two weeks ago. I work at a government office that provides certain assistance programs. (Once you go to work for one government agency, you realize there are a whole lot more of them than you ever thought before.) I really don’t want to go into it any more specifically than that.

It’s been very rough on me. Last winter, work was physically draining. I basically have two whole hours every day that I am awake and not at work, preparing for work, or traveling to and from work, and semi-conscious. Not only am I so physically exhausted that I go to bed three hours after work ends, I am so physically exhausted that my brain just cannot be pushed any further. I have trouble comprehending the blogs and news sites I normally read; writing is usually out of the question. Of course, we won’t even talk about anything more physical than that — even preparing a boxed dinner for myself is too difficult. My apartment is even more a mess than usual, because I don’t have the energy to pick up the clothes that I shed as soon as I get the front door shut, the mail and personal items that trail after me from the couch to the bedroom…

Unfortunately, so far this year, it hasn’t just been physically draining. I’ve been dealing with a sudden onset of severe migraines, and not the type of migraines I’ve had since childhood and have an intimate knowledge of — these are more classic migraines, the nausea, the aura and vision distortion, the intense pain and pressure behind the eyes… The pain is not as overwhelming as my normal migraines (where a twitch of the toe makes me want to scream or cry or at least moan, but the movement and force of emitting any noise at all would hurt even worse, so I just curl up and remain frozen in misery), but the experience is just as miserable because it block’s my brain’s ability to function, even to process the smallest of information. I’ve been having trouble writing six-digit numbers on the top of each application. And normally I work faster than the worker next to me, but the past two weeks she’s been cranking out work three times faster than me.

It’s frustrating. I’ve been doing everything in my capacity to do to fight these headaches off. Everything. And no, I don’t want any helpful suggestions. But regardless, even with all the desperate measures I have been taking, they persist.

On top of it all, my endometriosis has decided to flare up at the same time. So I get double nausea, extreme abdominal cramps, persistent pelvic pain and other symptoms.

I’ve been in a lot of pain.

I take a lot of medications. For pain. I take medications that have no effect on people who do not have a specific type of pain disorder. And I take medications that people who are not in pain popularly take to get high. (I do not, for the record, take anything to get high myself.) And I put up with a lot of shit to continue taking one of few medications that works and that enables me to work.

(I guess I could give it up and therefore be putting up with less shit. But then I’d, you know, not be able to work. And for so long as I have the option to be able to work, I’m taking it. Because I may not even have that option forever. Situations change, bodies change, and bodies change how they react to medications over time. I’m doing what is necessary for myself and my family at this point in our lives.)

So, at work today.

I sit on the far side of the first floor of our building, along with all the other people working in my particular program, the people working on another program, and a couple stray general clerks across from all of us. The other program’s supervisor and one of the other program’s workers (OPS/OPW hereafter) were talking about a certain case, a woman who was being denied medication and needed help obtaining it. This was before lunch, it was a general talk in a work context, that is how to get the problem solved.

My husband and I went home for lunch, as we do regularly, given that we live less than five minutes from our workplace. It takes half the lunch period but it is worth the spoons because it makes the workday so much more bearable — two four-hour chunks rather than one long nine-hour one. We sit around, watch The People’s Court reruns, eat our lunch and laugh at the cats who get in silly, hyper, meddling moods around that time.

I returned from lunch, feeling a lot better having had a break from the fluorescent lighting and ambient noise of the HVAC system. And a few minutes after I got back, sitting next to the OPS scanning documents into the computer system, OPW wandered back over and began talking again about the client from before.

The medication? Oxycontin. Her doctor has been prescribing it to her for over 15 years.

And the conversation? Went like this. (As typed soon after in an email to my husband, as close as I could get to what they actually said, given how stunned and hurt I was while it was happening.)

OPW: do you watch house?
OPS: no not really
OPW: well he has some sort of leg injury, but he takes that other one, what is it? vicodin
OPS: uh huh
OPW: and they sent him to rehab, and he just had to find something to occupy his mind so he wouldn’t think about it
OPS: yeah they get addicted so easy
OPW: and now they put him on regular pain killers and he’s doing just fine
OPS: yeah a lot of the time tylenol or advil works just as well, people just want the high
OPW: exactly, and their doctors prescribe it to them and they hand it out to family members…

And the conversation went on like this for a couple minutes, with the two of them walking back and forth fetching printed documents, attending to the scanning etc.

I just… I’m not terribly private about my condition. I don’t bring it up, but if it’s relevant I talk about it. I do try to avoid telling my coworkers that I take narcotic medications (as opposed to just “medications”) but I have gone over it specifically with HR as it can be a security issue in some agencies.

I was sitting right there. OPW sits on the other side of me, and had to walk around me to get to where OPS was at the scanner. I was sitting right there.

They were talking about me.

They weren’t thinking of me, of course. They’d never make that connection. I’m young and thin and pretty enough. They know I work hard. Most of my office loves the hell out of me.

But if I had spoken up — rather than sitting there holding my breath trying not to cry — how would that opinion change? Would they start seeing me as lazy, as slacking off? Would they whisper about me every time I went to the water fountain for a drink? What was I taking? What was I doing with it? Would they start taking certain behaviors as symptomatic of addiction? If I passed too well one day, appearing to be just fine (to them; I am good at covering up my pain) — would they take that as evidence that I couldn’t actually be in pain and couldn’t really need that medication? And if I didn’t pass well one day — especially these days, when I’ve been stopped more than one time as someone remarks on how deathly pale I am and asks if I’m OK and tells me to take a break — would they see that resulting, not from my pain, but from the supposed addiction?

They were talking about me. They didn’t even know it. But I am that person on that medication. Pushing through the pain to keep working.

The difference is, Dr. House is a character.

I’m real.

And that woman. These were the attitudes of the people who were helping her resolve an issue. As much as I wish otherwise, workers do have some degree of latitude in deciding how they are going to approach a case, and can apply the law in different ways for different people, even if it appears pretty strict on paper.

I am that woman.

I have been there. I am there. I have to deal with unsympathetic figures in obtaining my treatment. Doctors, nurses, office staff, pharmacists, insurance reps, welfare reps, other reps. I have issues I have to call to have resolved. I have that person on the other line who’s promising me on the one hand to resolve the issue — but on the other hand …? How can I ever know?

I don’t know what was going on in this woman’s life. I don’t know if she’s dependent (there is a difference). I don’t know if she would be better off on another course of therapy. Or whether she’s tried all those other courses and they’ve given her awful side effects or they’re contraindicated given her particular condition or they’re unavailable to her due to income or access. I don’t know.

Maybe she’s abusing. Maybe she’s handing it out on the street corner.

Maybe she’s just like me. Just one person trying to power through this world as best she can. And this is the best way she’s found to do it.

The Negative Side of Positive Thinking

21 October, 2009blaming, bodies, class issues, intersectionality, media and pop culture, shamingableism, advice, disability, exclusion, illness beliefs, problematic attitudes, self-help, the secretAnnaham

“I don’t have time for positive thinking. I spend all of that time thinking negatively.” –Kathy Griffin

I might as well come right out and say it: I highly dislike the whole positive thinking movement. I would say “I hate it,” but that might get me accused of being bitter, cynical, negative, and many other colorful things in the comments. I do not dispute that I am, at times, all of those things. However, the fact that so many people take the construct of “positive thinking” as the big-T Truth on how people other than themselves can (apparently) improve their own circumstances by thinking “positively” is something that I find very troubling and a little bit scary, and also a bit naive.

You’ve probably heard of positive thinking and its (supposed) benefits. You’ve also probably heard of things like The Secret, which is a self-help book and DVD (and they have other products, too, including a daily planner and something called an “affirmation journal”). For those of you who have had the good fortune to not have come into contact with The Secret, the basic premise is something that sounds pretty innocuous at first, if you don’t examine it too closely or think about it too hard: there is something called “the Law of Attraction,” which posits that the individual can attract their own good or bad circumstances in life just by thinking about them.

I want to stress the part about the “bad circumstances” here. If you swallow that bait–which, like most bait, conceals a dangerous trap–here is what you are buying into: I can attract good things by using my thoughts. If I think positively, I will attract good things.

However, the other side of such a dichotomy is–to put it mildly–really creepy, at least for those of us who have health issues and other problems beyond individual control. I will use myself as an example here: I have fibromyalgia. According to the dubious logic employed in The Secret, I have somehow attracted this. And, according to The Secret, I can think my way out of it. I can be CURED!

Oh, wait. My condition does not have a cure, and thinking one’s way out of a chronic condition is generally not recommended by certified medical professionals. However, according to the “Law of Attraction,” if I don’t think my way out of my condition, or can’t, then I basically deserve whatever happens to me. I brought it on myself, after all.

Therein lies the problem: This type of philosophy places an untoward emphasis on the individual: You control your reality. You control what happens to you. You control how much money you make. You deserve the best. Solving problems or helping others is beneath you, because it is all about you. You’ve got the world on a string, (sittin’ on a rainbow!) and it’s yours for the taking. Why help others, when you can just attract everything you want with your thoughts?

By now, you are probably starting to see exactly why this way of thinking is so troubling, particularly if you are a feminist, have a disability, are aware of social justice issues, or are not C. Montgomery Burns and therefore obsessed with your millions (and not much else).

What is so problematic about The Secret and many other self-help products is that they, however indirectly, make the status quo feel better about itself. People who buy into the “Law of Attraction” philosophy are not actually changing the world; no, that would take actual work. Instead, sayeth the Law, why not just think about changing the world, and let The Secret’s specious (and incorrect) use of quantum physics do the rest? See? Wasn’t that way easier than, ugh, going out and doing things?!

Telling someone to just “think positive” will not help her or him. I know that’s a rather harsh statement to make. I have had people “helpfully suggest” positive thinking (numerous times, I might add) in order to help with my illness. It is supremely frustrating, and it also makes me want to ignore whomever has offered that particular fool’s gold nugget o’wisdom. I get that people are scared of illness, disability, and death, and I understand why they are scared. But shaming people–particularly those with disabilities, chronic pain, mental health issues, and other chronic conditions–into silence by “helpfully” suggesting that they “think more positively”–and thereby shutting down the conversation or any room for the PWD to defend hirself–is not a solution. Rather, it just reinforces the it’s all about me claptrap that so much of the self-help industry traffics in; such “helpful suggestions,” oftentimes, are really meant to make the person who offers them feel better about hirself, and are not offered out of concern for the PWD or whomever else is unlucky enough to have been outed as a non-Positive Thinker.

After all, when someone offers those types of “helpful” suggestions to a non-Positive thinker–particularly PWDs or other people who have been marginalized by various cultural institutions–what she or he is saying starts to sound like, “I don’t take your experiences seriously. I care about expressing my opinions about your life and how you live it, so I can feel like I’m doing something and thus feel better about myself.” So, in effect, it really becomes all about them once again. And, in their minds, it is all about them, because the latest self-help craze told them so!

I will end with a quote from disability scholar Susan Wendell:

[T]he idea that the mind is controlling the body is employed even when physical causes of a patient’s symptoms are identified clearly…The thought that ‘she could be cured if only she wanted to get well’ is comforting…to those who feel the need to assign a cause and cannot find another, and to those who want to believe that they will avoid a similar disaster because they have healthier, or at least different, psyches. (The Rejected Body, 1998)

Ableist Word Profile: You’re so OCD!

19 October, 2009Ableist Word Profile, language, mental health, Uncategorizedableism, disability 101, OCD, things people say, word useOuyang Dan

Welcome to Ableist Word Profile, a (probably intermittent) series in which staffers will profile various ableist words, talk about how they are used, and talk about how to stop using them. Ableism is not feminism, so it’s important to talk about how to eradicate ableist language from our vocabularies. This post is marked 101, which means that the comments section is open to 101 questions and discussion. Please note that this post contains ableist language used for the purpose of discussion and criticism; you can get an idea from the title of the kind of ableist language which is going to be included in the discussion, and if that type of language is upsetting or triggering for you, you may want to skip this post.

Someone walks into my kitchen for the first time looking for something they will more than likely find the cupboards nicely arranged. I like things with the labels facing out, neatly lined up, dressed to the front. I like to have like items together (my cooking items are in a separate area from my baking items, and snacks, to begin to scratch the surface) to make it easier to find things. Our Korean apartment is smaller than we are used to in some areas, so being organized is a must when it comes to storage. We have Tupperware canisters lining the counter tops with frequent used and bulk items in easy reach, and also in the fridge w/ the produce already prepped. When we bring meat home from the market we divide it into portions and vacuum seal it before storing it. Some of this is for space sake, some of it is because I like to cook and will use spoons I sometimes steal from elsewhere to do so, and having the kitchen arranged as such makes that easier. I have had more than one guest wander through the kitchen chuckling and mention to me how OCD it is (which really doesn’t make sense if you think about the acronym).

No. My kitchen is clean. It is neat. It is sometimes meticulous (when the dishes are done), it is user friendly, well organized, color coded, over-the-top arranged, even. My aunt would say you could eat off of my floors (some days, but we do have a seven year old).

OCD, or Obsessive Compulsive Disorder, isn’t just the tendency to keep things all tidy like Mary Poppins on a sugar rush. It doesn’t mean that you like your clothes hung in chromatic order or your socks folded a certain way, or even that you sort your M&M’s into color groups before eating them. It isn’t your friend with her dust free home or Bree VanDeKamp hair or Emily Gilmore six-inch tapers.

It does mean that you tend to have thoughts (obsessions) that intrude into your mind and make you extremely uncomfortable, because you know that they are unreasonable. Some people have thoughts where they hurt themselves or their loved ones. When I was much younger I once had repeated visions of shoving a corkscrew into my eye while at the bar where I was working. Understandably it was bothersome, and actually there were times that it worried me to tears, because I knew I wasn’t going to shove a corkscrew into my eye, and I couldn’t figure out why my brain was giving me that picture. People often engage in repetitive actions (compulsions) to alleviate the stress of these thoughts. I wiped bar glasses and liquor bottles until they were spotless, and later at home plucked my eyebrows into oblivion because they were never quite symmetrical. I brushed my teeth until my gums bled…anything to keep my mind off of that fucking corkscrew. In your mind you know that having washed your hands or brushed your teeth fifteen times before school has probably already taken care of any germs (and skin or enamel), but you can’t get the thoughts of those germs gone. So you brush, or you wash. And you still think your hands are covered in bacteria or you can feel your teeth rotting in your head (even though you know it isn’t true). So you wash again…and you miss that first class…even though you know better.

It overcomes your life. OCD isn’t just some cute little habit you have of always placing everything on your desk perpendicularly or always lining shoes by the door. It actually interferes with your life and how you are able to live it.

When I was in college I knew that I wasn’t going to blow up my apartment. My rational mind was well aware of that fact, even though I could see the building on fire and me standing outside of it. But after cooking, when I had to leave for class, I had to go over to the gas stove and turn all of the dials on to make sure I had turned them off…even if I hadn’t used them. The oven too. I just couldn’t stand the thought of leaving the gas on and having something happen to my roommate while she slept. Then I would grab my bag…and even though I knew I had just. checked. the. damned. knobs. I had to go back and check them again. After this I might get out the door and lock it, but then I’d have to go back in and check again. The next time I might make it all the way down to the main door of the building. “What if you missed one? You could blow up the whole building!”. Back up three flights of stairs, unlock the door, and check the knobs again. Of course they were fine, just like the last three fucking times I checked. That didn’t stop me from having to go back two more times, once after thawing my car, and once after I had actually left the parking lot, made an illegal U-turn, and gone back. I kept seeing the whole building go up like a giant bonfire on a July evening in Michigan.

I was two hours late for class.

I was obsessed with numbers. If I had pieces of something I couldn’t eat it unless it could be divided into odd-numbered groups of odd numbers. My weight became an obsession, which isn’t at all uncommon in people with OCD, and no matter how much I lost I was certain that I was disgusting and fat and gross to everyone who saw me. I actually measured “ins” and “out”, and I will leave you to those pleasant details all on your own.

Years of therapy later I am able to find myself in a place where I can control my OCD, and I have come a long way in managing it. This isn’t true for everyone, because each of us are unique and what worked for me isn’t going to work for the next person. I am by no means “cured”, but there is something to be said for being in a stable home environment for the first time in my whole life that has turned the corner for me. There are things that will cause me to slip…

Some other fun facts about OCD.

There are some lesser known offshoots, such as Trichotillomania and Dermatillomania. These conditions begin with the same intrusive thoughts, but instead manifest with compulsive hair pulling and skin picking. I have both of these conditions. The hair pulling left me with little to no eyebrows, and an embarrassing bald spot on the back of my head that covered nicely with a military style bun. Without babbling on as I am wont to do, it was another thing I had to work through with a mental health professional (and one awesome esthetician). The skin picking is still a challenge, and as stress in my life heightens so does that. This is the most embarrassing of my anxiety issues because this leaves the most obvious marks on my face. My arms I can hide with long sleeves. Even though I am incredibly aware of the marking and scarring left, most people don’t notice it, unless they are very close to me, and even then most don’t unless I am comfortable enough around them that they have actually seen me doing said picking.

So, I believe we can see why the usage of OCD is ableist here: it isn’t some funny quirk. You are trying to be witty. I get that. But your witty words mean things about my life, parts of my life that I have worked to overcome, and which people I know are still living with daily and that just isn’t funny. It isn’t something we close up in a cupboard and laugh about with friends*. It is a daily struggle for people who absolutely know that they are doing things that are unreasonable to help them cope with the anxiety of things that they also know are unreasonable. We slog through it, grind it down over years, beat it back, and work our asses off to gain chunks and pieces of our lives back from it. That is no joke to us. It is extremely ableist for a person who is in control of their thoughts and actions to appropriate this term to mean that someone is really particular about the way they like things.

So, no, your very tidy friend is not OC. Unless sie is. And then, ha ha, sie probably doesn’t appreciate having hir life poked at.

*OK, you got me. Sometimes we do. But that is our right, not yours.

Second Shift for the Sick

15 October, 2009accessibility, Uncategorizedableism, accessibility, barriers to access, chronic illness, disability, health care, illness, invisibility, invisible disability, justice, me, medical care, participation, personal, privilege, problematic attitudes, spoons, storiesamandaw

(Originally posted November 2008 at three rivers fog.)

I had always meant to expand upon this topic, but never found the right words for it, succinct and meaningful. But, well, that’s not exactly my style either.

My job situation is still shitty, and I’m currently part-timing at a retail pharmacy as a cashier. (Sample day: Mid-20s white guy “discretely” [read:blatantly] takes a picture of me on his cell phone as I am kneeling down assembling a battery display; someone shits in the toilet paper aisle [seriously! a person! took the time to unbutton their pants and all!]; I set alarm off while fetching pushcart from back room.) “The injustices of retail,” I said to my coworker, as I nursed the scratch on my finger from pushing that toothpick in a little too hard.

But honestly, I still do, and always have, appreciated working with the public. It’s the kind of thing that reeks a little too much of bullshit to say in an interview (“Really! I love when people show visible surprise at the revelation that I can do third-grade math!”) but, well, it’s true. I like people. I am, fundamentally, the kind of person who likes spending time with people (though my severe social anxiety always masked it). I’m not a butterfly by any means — good God, I can’t stand parties, pubs, or the mall at Christmastime, and I always need time to recharge after any extended social time — but I do enjoy interacting with a variety of different people, and there are days I go home smiling because of it.

Today I met a man named Robert. He stopped by to ask how long a sale price on a can of Folgers was supposed to last, and we ended up chatting for a good ten or fifteen minutes — the line piled up behind me, but I didn’t give a damn. Robert was in a wheelchair, for whatever reason, and was there to pick up his medication, whatever it was. He got his “paycheck” on the third of every month, and only the third (read “paycheck,” there, as Social Security disability check) but right now he was fighting with Verizon, who apparently shorted him half a hundred dollars worth of minutes on his phone, and he was going back-and-forth with them to get the situation righted, and anyway he wouldn’t be able to come back for his coffee til then. I was nodding and exclaiming the whole time as he was describing how much fighting he had to do — to get his transportation to the doctor, to work, to the grocery store; to get his medicine filled correctly and on time; to keep his welfare benefits flowing smoothly (there is apparently a very common mistake that gets made on his account every couple months, and he then has to make a dozen calls here and there to get things patched up, and then a few weeks later some new worker makes the same mistake again, and…) etc. etc. etc.

God did I identify, and I didn’t have to deal with the half of what he did. The fatigue and the worry and the energy and the stress and the wasted time — and when I related as much to him (having by this point unfolded my stool and sat down over the counter) he laughed it off — “Oh hell, I’m used to it by now — doesn’t bother me.”

I hope I never get to that point. No one should ever have to get to that fucking point. No one should ever have to spend half their waking hours, no fucking exaggeration, correcting other people’s mistakes just to keep the basic necessities of life covered — and then getting attitude from those same people for being a pain in the ass to deal with.

This is a serious time sink for the ill and disabled. It is time that could be spend — you know, maybe working? bootstraps and all — could be spent writing, could be spent playing board games, or taking a bath, or spending time with loved ones, or going out to eat — or any number of other things that are totally productive, constructive, positive things to do — which, to varying effect, do make contribution to wider society.

And it’s a lot of time. This is why I call it the second shift: much like the second shift of professional women, who arrive home from work to do the domestic work their husbands do not do: this is a disproportionately larger share of time spent fighting, always fighting, pushing determinedly (or tiredly) through near-constant resistance.

Resistance — truly the best word for it — it is as though “normal,” “healthy” folk are able to move throughout the world uninhibited, like pushing your hand into thin air — but sick people, disabled people must move through a world which is set up to prohibit their full participation — like pushing your hand into a thick heavy bog.

That is privilege. The ability to swim through your sea with nary a care, completely obliviously unaware of the freedom of movement you are so fortunate to have, while the rest of us have sand bags tied to our limbs, anchors roped round our waists, our feet set in cement blocks… and to look back at us and ask, “What’s taking you so long?”

It’s exhausting. I cannot convey in words how exhausting the fight is. Always on the defensive, always saddled with the knowledge that your basic needs require a struggle, while everyone else’s basic needs are pretty much a given so long as they put in at least a half-assed drop of effort. It’s not even just time spent, it’s energy.

Look at it this way. How do you build muscle? You subject your muscles to resistance, just enough to create thousands of tiny little tears in your tissue, which your body then, with rest and nutrition, repairs — which leaves you stronger.

But this does not mean that all resistance therefore makes you stronger. Because the more you pile on, the more tiny little tears you make. And the less time you have to rest, to eat and drink well, to tend to your bodily health, the less of those tiny little tears get repaired. And you find yourself, now, with millions of tiny little tears, and not enough time or fortitude to repair even only the thousands you had before this overload.

Which means you don’t get stronger. You get weaker.

“What doesn’t kill you makes you stronger.” What unadulterated bullshit. And it has the bonus effect of implying that those who do not feel stronger after a difficult incident, those who feel fatigued and despondent, those who see themselves as in a worse place than they were when they started — it implies that those people are choosing their fate. It implies that those people get something out of their misery.

Say, all you sick people out there: does any of this sound familiar?

Robert and I wrapped up our chat — turns out he lived in Anaheim for awhile, and also attended Cal State Fullerton; what a small world! — and I moved on to the next customer, affecting the smile and the sing-song customer service voice. Hi! Do you have your [Pharmacy Name] card with you today?

But it was nice, if only for a moment, to connect with someone. To, prompted by the unspoken invitation of a new friend, reach down into myself, and connect with the real person deep inside.

Maybe our struggles make us stronger; maybe they make us weaker. It doesn’t matter. We work with the tools we are given, and we still make something whole and beautiful, something worthy, something satisfying. Why do we have to come out of every fight bigger and “better”? Why can’t we be broken and hurt? Why can’t we cry, why can’t we curse, why can’t we be angry and disappointed and let down sometimes?

Right — because we wouldn’t want to make the rest of you face up to the damage you do to our lives. We wouldn’t want to “burden” you, wouldn’t want you to have to do anything to maybe reduce a little bit the fighting we have to do to live our lives. We wouldn’t want to make you have to think about how your actions and attitudes affect other people — wouldn’t want to make you uncomfortable.

When we are allowed to be angry, to be sad, to be bitter and disappointed, we are allowed to be human. When we are denied these emotions, we are denied our humanity. We are denied the full range of human experience.

It is fundamentally unfair — to weigh a person down disproportionately — to pile more and more shit atop their back — and then to grow indignant when that person lets out a sigh under the pressure — much less looks straight at you and lets rest the responsibility where it belongs. But this is how we treat each other — immigrants, queer folk, the disabled, those of color, the poor and disadvantaged — because we are fundamentally uncomfortable owning up to our own power.

Life would be so much better if we realized how much power we all have over each other — and how much power everyone else has over us — our interdependency. It is the concept out of which disability grows. And life would be so much better if we could look at this fact and see, not

scary,

unknown,

but

opportunity.

Ableist Word Profile: Hysterical

13 October, 2009101, Ableist Word Profile, feminism, intersectionality, mental healthableism, language, word useabby jean

Today’s word: hysterical. There are a lot of different contemporary definitions of the word (Merriam-Webster, Cambridge, Encarta), but the theme among all of them is emotions that are extreme and unmanageable. A movie described as hysterically funny is likely funnier than most and may cause you to laugh uncontrollably and snort soda out your nose. Someone at a funeral who is crying loudly and who cannot seem to stop crying would likely be described as crying hysterically. But while your mental picture of the movie-goer laughing hysterically could have been either a man or a woman, the person hysterical with grief or worry is much more likely to be a woman than a man. That’s no accident – the history of this term is very gendered.

The word itself is derived from the Latin word hystericus, meaning “of the womb,” and from the Greek word hysterikos, meaning “of the womb, suffering in the womb,” from the Greek word hystera, meaning “womb.” And they understood the uterus to be the direct cause of hysteria. As Hannah S. Decker writes, “Various ancient Greek philosophers and physicians, including Plato, had argued that the uterus is an independent entity within a woman’s body… these thinkers concluded that the uterus had an ardent desire to create children. If the womb remained empty for long after the owner’s puberty, it became unhappy and angry and began to travel through the body. In its wanderings it pressed against various bodily organs, creating “hysterical” — that is, uterus-related — symptoms.”

So when someone on a blog tells me to chill out because it sounds like I’m hysterical about an issue, the etymological meaning is that my failure to put a baby in my uterus (which has independent will and agency inside my body) has caused it to become angry, loose itself from its mooring, and start floating around inside of my body until it bangs into my brain and starts making me unreasonably upset.

There’s also a strong historical tradition of labeling women as “hysterical” in order to silence, marginalize, or even kill them. During the Roman Catholic inquisitions, thousands of European women were tortured and burnt as witches because they were thought to show signs of hysteria. But it was during the Nineteenth Century that things really got going. Some doctors considered the force of the uterus so powerful that it might overcome the brain and cause a woman to have pathological sexual feelings, “requiring” the physicians to “medically manipulate” the genitals in order to release the woman from control of her uterus. Yes, you read that right, the doctors were obligated to fondle their patients sexually for their own medical good. Conveniently, both mental or emotional distress and any physical symptom could be an indication of a woman’s hysteria, so doctors could diagnose literally any woman as hysterical.

Once hysterical women were no longer burned at the stake, the most common treatment was to send them to bed or to an asylum to prevent any activity or thought that would inflame their hysteria. This was an extremely effective way to marginalize or silence women, as any protest that she was not hysterical would be seen as conclusive proof that the diagnosis of hysteria had been correct. This meant, practically, that any woman categorized as hysterical was forever silenced and lost all credibility.

That’s a whole big mess of etymology and history, so let’s unpack that a bit. When I am told I am hysterical, there is both 1) the implication that I am excessively or unreasonably emotional AND 2) the implication that my condition is unique to my femaleness. It’s also 3) implied that hysterical statements (or even statements from hysterical people) should be discounted and hysterical people need to change in order to participate in the discussion, or should be removed from it entirely. Now let’s look at each one of those individually.

The first is a criticism of and dismissal of my personal emotions based on the observer’s judgment on whether they conform to what “normal” or “reasonable” emotions would be for that situation. The idea of “extremeness” is built into every definition of the word, implying that there is an assumed agreed-upon “normal” range for emotions. In the past, that likely meant “emotions acceptable to white men with money.” Currently, though, the idea is strikingly parallel to current definitions of mental disabilities and mental health diagnoses in the DSM-IV, which require that a specific set of symptoms “must cause significant impairment in social, occupational, or other areas of functioning” in order for a person to meet diagnostic criteria. This means that thee idea of emotions that are outside the “normal” range of experience to the degree that they affect a person’s function is the very definition of mental illness. So the accusation of “hysteria,” with the implication that the hysterical person has abnormally extreme emotions, is very clearly an accusation of mental illness. And remember part 3 — the conclusion that a hysterical person (or a person with a mental disability, by equivalency) should be discounted in discussions because of their hysteria/disability. THAT IS ABLEIST.

But that’s not all. The other implication of the term is that this over-emotional condition is a uniquely female condition and is caused directly by female reproductive organs being sad about not having a baby. While that’s not literally how it’s meant today, it still feels like a slightly nicer way of saying “you’re just upset because it’s that time of the month,” another way to marginalize and dismiss females based explicitly on their femaleness. It’s a way to say “that sounds like something a woman would say when she’s being super woman-y and influenced by being a woman.” And again, this is assumed to be a reason to discount the information or perspective offered and to exclude that person from the conversation. THAT IS SEXIST.

And here’s where the intersectionality comes in. Hysterical is a handy dandy insta-dismissal that slams two marginalized groups at the same time – and it only works because to be related to either group is considered to make you lesser. It also means that this word, with its invocation of both ableism and sexism, is particularly sharp when aimed at women with disabilities. That’s why arguments like “It’s sexist because it makes all women sound like crazies! Who’d want to be a crazy!” are extremely problematic – not only does the word rely on both sexism and ableism, it relies on the interaction between those two axes of oppression to be a super strong word.

If we thought of people with mental disabilities as full equals, with valid feelings, thoughts and perspectives that deserved respect, then the message “you are talking like a person with a mental disability because you are a woman” would be a compliment. The message would be “you are presenting a perspective or idea that deserves respectful consideration.”

If we thought of women as full equals, with valid feelings, thoughts, and perspectives that deserved respect, then the message “you are responding with extreme emotion because you are a woman” would imply that the emotion was valid and important and deserved respectful consideration. It would likely mean that whatever idea or perspective presented with that emotion would be given more credit and consideration, not less.

It only works as an insult, as a way to dismiss and marginalize, because both groups are considered lesser. And this is a great example of why intersectionality is so important – the kyriarchy uses other marginalized groups to attack us. As we support each other and all grow stronger, the kyriarchy will be less able to use these groups against us.

Note: I use the word hysterical in some contexts (‘I was hoping Zombieland would be as hysterical as Shaun of the Dead but it totally wasn’t.’) — I think these concerns are primarily relevant when using the word to characterize an individual’s argument, ideas, emotions, or perspective. I’d be interested in learning if others find it problematic in those contexts.

Portrayals in Pop Culture: Adam

13 October, 2009identity, intersectionality, media and pop culture, mental healthableism, autism, media and pop culture, mental illnesskaninchenzero

In August the wife and I saw Adam, a romance featuring a person with Asperger’s Syndrome and a neurotypical. And it was really rather good, especially measured against other portrayals of autistic persons in popular culture. It is always astonishing how much of myself I see in depictions of people with AS, even when the wife isn’t nudging me and whispering “You so do that.”

It’s true, I do. I’m older than Adam and my (admittedly self-diagnosed but dude it really fits) version of the autism is a bit different than his. But we still share a lot of traits. Tinnitus, check. Visual distortions? Yup. Difficulty with officials and paperwork? Yes. Socially inappropriate questions? Oh deep fried shit on a stick yes. Rage? ~~HULK~~ MOIRA SMASH!

Of course, when I was a wee bairn, Asperger’s Syndrome as a diagnosis hadn’t made it to the U.S. yet and wouldn’t until 1992. Autism, then, meant you didn’t talk and I talked like anything. I didn’t talk like a kid. My family still tells these things as cute baby stories: I taught myself to read by the time I was three and read compulsively. If there was a cereal box on the table I had to read everything on it. I would grab my crossed ankles and rock on my back for hours at a time. The day I found out what penises were I went around the neighborhood asking everyone if they had one. I did not know how to make friends. I sort of wanted to, but I was most comfortable in structured settings like Scouts or, later, role-playing games. It was (and remains) difficult for me to look people in the eye and to touch them and I was constantly being told to do that and to shake hands firmly. I needed to look more like I was paying attention in class. I actually was paying attention as was demonstrated every time a teacher asked me a question and I answered it correctly; I just didn’t look like I was paying attention and that made them angry.

When I am very upset I stop being able to talk. I pick compulsively at my skin. I don’t interview well — I’ve never gotten a job by applying and interviewing for it. Every job I’ve ever had I’ve gotten because I started as a temp and they kept me. I’m not good with figurative speech or most kinds of humor. If I get something in my head I want to say it will come out.

So, Adam. His is the version that has more externally-directed rage. (Mine is turned mainly on myself, hence the scars and the hospitals and becoming a veritable sommellier of psych meds.) It’s done very well. Hugh Dancy spends a lot of time with reddened, tearful eyes, but he has suffered a series of very large life-changing events. He does a pretty good job portraying a person with AS without making Adam a straight-up freak. It’s clear that Beth (Rose Byrne) loves him at least partly because of (and also in spite of–I know I’ve been difficult to live with at times) the way his brain works. Adam-the-character is rather luckier than most of us; he grew up upper-middle-class in Manhattan, inherited a fair amount when his father passed (before the movie even starts, it’s not a spoiler), he gets lots of interview coaching and gets his well-paid dream job.

It’s not exactly the median experience. It can and does happen, but many more of us work a series of low-end, low-paying jobs until our social difficulties get us asked to move on (which has happened to me, though it was also tangled up with transgender issues). My résumé is a very model of stability by AS standards despite the occasional long gaps in it.

Sorry. It’s hard to talk about the movie without talking about AS in general and about me. It’s a sweet movie. It’s nice to see someone like me as something other than a socially crippled freak or the larval stage of a serial killer. It’s just the movie version of an autistic person’s life: charmed and ultimately successful (socially, financially, romantically) despite occasional setbacks.

Of course I consider my life moderately successful and I’m looking at not working at all soon. I have a family. I’m loved. I’m still poor.

There’s one thing I’d change about Adam-the-movie: After Adam-the-character’s father dies, a guy named Harlan (Frankie Faison) fills in as father figure. The role edges into Magical Negro territory. It didn’t have to be this way. Harlan, you see, is a locksmith. He drives a beat-up green van and wears a gimme cap. He is the only working class character with a significant role in the film and the only person of color with a significant role in the film. I suspect that since Adam was given a folded flag at his father’s funeral (again, not a spoiler, it’s the first scene), Harlan knew Adam’s dad in some sort of uniformed service and stayed in touch after despite Harlan being a black locksmith and Adam’s dad being a white professor at Julliard.

I’d have made Harlan one of Adam’s dad’s colleagues from Julliard. A piano instructor or something. Put him on an equal footing with regards to social and economic class with the white people, instead of the working stiff they did. I can’t tell you how many books and movies I’ve seen the same damn thing in. Hey! Creative people of America! There are rich black people! They go to college! They teach at college! Put them in movies and TV shows and books already, you crypto-racist falsely-inclusive jerks

Outrageous pre-existing conditions

12 October, 2009accessibility, blaming, feminism, intersectionality, justice, medical practice, social attitudesableism, asthma, autism, chronic illness, chronic pain conditions, difference, disability, exclusion, feminism, health care, health care is an accessibility issue, health conditions, illness, intersectionality, justice, medical care, mental illness, privilege, problematic attitudes, social policy, social treatment, things people sayamandaw

(Originally posted a month ago at three rivers fog; in the meantime, news also came out that things like acne were considered pre-existing conditions as well: consider any and all further outrage well and fully included in the subject of this post.)

You’ve undoubtedly heard the news already. A history of domestic violence or C-section are considered, by private US health insurance companies, to be “pre-existing conditions,” which are used as a basis for denying coverage, rescinding coverage, charging higher rates, or other discriminatory practices.

Of course, this is outrageous. Why should a woman who has been beaten by some asshole be denied health care coverage? It isn’t fair.

But there’s something wrong here. And not just with this discriminatory practice — but with the people breathlessly reporting it.

Because, you see, it is being reported, not as:

Pre-Existing Condition Exclusions Are Morally Wrong, but as

How Dare They Treat DV Victims and Mothers the Same Way They Treat Women with Depression, Diabetes and Cancer!

It is being reported as different from “normal” pre-existing condition exclusions. It is being reported as being especially wrong. As being worse. A true moral violation, taking things to a new level.

But why?

Here’s the thing. Insurance companies refuse coverage to people with pre-existing conditions (anything from asthma to leukemia) because they know these people will be highly likely to incur greater costs than healthy patients. The entire rationale for excluding them is because they cost more money.

If you have had a C-section once, you are much more likely to end up having another one if you ever give birth again. If you have a history of domestic violence, you might end up with an abusive partner again, and end up needing care.

Yeah, it’s complete bullshit that these people would be refused health care. It’s downright immoral.

But why is it especially immoral to refuse health care to these women — but not to women with osteoporosis or an anxiety disorder or back pain? Or Ehler-Danlos Syndrome or food allergies or heart disease or lung cancer?

How is it any different?

Victims of domestic violence don’t deserve to suffer consequences for something that is not their fault. This is truth. It contributes to the very popular cultural myth that victims are somehow to blame for the abuse they suffer — that they must have done something to provoke it, or that they should have left, etc. All this stuff is highly damaging.

But that doesn’t make it different than telling a woman with lung cancer that she can’t have care because her disease is somehow her fault. Which contributes to the very popular cultural myth that people with medical conditions are somehow to blame for them — that they must have done something to earn them, that it’s their own fault they ended up that way, and therefore they lose rights to certain things because they are inflicting the costs of their mistakes on the rest of us.

Because if you haven’t done anything wrong, you won’t ever end up sick. If you do end up sick, there must be something you did wrong.

Maybe that woman smoked. And maybe that other woman slapped her boyfriend first. And that woman who was raped wore a short skirt and flirted with the man first. That does not make this violation her fault. This is basic feminist theory. “Blaming the victim.”

Health care is a human right. We all deserve basic health care that respects a person’s dignity and integrity and humanity.

So why are these things different? Especially outrageous?

I can’t identify any reason except one.

Because they apply to healthy women.

It’s understandable why health insurance companies would refuse care to women with arthritis. It makes sense that they would deny care to women with psychiatric disorders.

Because we, as a society, think it is OK to deny quality of life and societal access to people with medical conditions, disabilities and chronic illnesses. We have determined that it makes sense to discriminate against them. We get why these things are done. And they’re done to those people. Over there. Not to me and mine.

But C-sections? Why, one-third of mothers in the US will have a C-section instead of a vaginal birth! That affects me and mine. Therefore, it is especially outrageous — that we would be treated like we treat them.

Oh, but that’s not how you think?

Really?

What justification is there for acting as though these practices are any worse than the practice of denying coverage to women who have lupus?

There isn’t any that isn’t rooted in a deeply ableist bias.

How about we get outraged by the fact that there is any such thing as a pre-existing condition exclusion at all? I can get behind you on that one.

Disability 101: Defining Disability

7 October, 2009101, languageableism, disability, disability 101, languageAnnaham

Hello, everyone! I am Annaham of HamBlog, and since I’ve written a Disability 101 series of posts, I thought it would be a good idea to cross-post some of the series here. My inspiration was piqued by the Finally Feminism 101 blog, which is brilliantly maintained by tigtog of Hoyden About Town. I hope that this series will answer some 101-ish questions about disability. My hope is that this will serve as a starting point for people (of all abilities) who wish to learn more about disability, chronic illnesses and health conditions, and the issues surrounding disability/CI/CHC terms, etiquette, and frequently-asked (and pontificated-upon) questions. (In case you’re wondering who the hell I am and/or why I am taking on this project, my bio is located here.)

If you have any comments or suggestions, please feel free to leave them in the comments field. Please be respectful and on-topic when commenting.
Also, please keep in mind that I do not speak for *all* PWDs and folks with chronic illnesses or health conditions in this series. It is not intended as “the” guide to 101 questions on disability; my intent is to offer (pretty subjective) answers to common questions on disability, and of course, there will be folks who disagree.

Thanks, and enjoy!

What is “disability?”

The World Health Organization defines “disability” in the following way: “Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations.”

Additionally: “[D]isability is a complex phenomenon, reflecting an interaction between features of a person’s body and features of the society in which he or she lives.” [ Source]

But aren’t we all disabled in some way?

No. This sort of “folk wisdom” implies, directly or indirectly, that mundane things—things that may be minor inconveniences (at least for some able-bodied people–those with whom this bit of “wisdom” seems to be most popular), but that are not fundamentally impairing or restrictive to one’s quality of life or participation in civic and/or private life—are disabling, when they are, in fact, not. Disability, additionally, is a term that refers to a long-term or lifelong condition.

What is “ableism?”

Ableism refers to discrimination, devaluation, misconceptions, stereotypes, and prejudice—conscious or unconscious—of and against people with disabilities, the chronically ill, and people with chronic health conditions. As a culturally-based structure that often intersects with other oppressive “isms,” systems of privilege, and “-phobias” (such as racism, sexism, homophobia, xenophobia, white privilege, cisgendered privilege, class/economic privilege, and transphobia) ableism assumes that able-bodied people are the “norm” in society, and as a result, culture, various institutions, attitudes and social mores are formed in accordance with the needs of able-bodied people.

What is meant by the terms AB and TAB?

“AB” is an abbreviation for able-bodied; “TAB” is a slightly more to-the-point abbreviation meaning “Temporarily Able-Bodied.” TAB refers to the inevitable—namely, that most of us will face disability at some point in our lives; whether it comes sooner or later varies depending upon one’s circumstances.

Originally posted at Faces of Fibro.

FWD/Forward

FWD (feminists with disabilities) for a way forward