Category Archives: social attitudes

Why I Identify As Disabled

27 October, 2009activism, identity, language, mental health, social attitudesabby jean

For a long time, I’ve struggled with whether or not to identify as ‘disabled’ (or as a ‘person with a disability.’) It’s only very recently that I’ve identified myself that way in my own thoughts, and even more recently that I’ve begun identifying that way publicly. (As in, my name listed as a contributor to this blog was pretty much my first public identification as a person with a disability.) Because I know a lot of other people who are unsure if they qualify as a person with a disability or are reluctant to identify as such, I thought it might be relevant to talk about some of my hesitations to identify this way and what finally convinced me that I do identify that way and why it was important to me to do so publicly.

My first reluctance came from what seems to be a very common concern – I did not think I was disabled ‘enough’ to identify as a person with a disability. At this point in my life, my disability is fairly well managed by medication and the approximately 900 million hours of therapy I’ve been through. My psychiatrist sees me once every 12 months to check on my blood levels and spend 10 minutes with me checking in, and other than that, I’m totally disengaged from the mental health care system. (Except for the pharmacy.) To everyone except those who know me extremely well, I pass as neurotypical. I work full time at a professional job. I live independently and manage my own household and finances. I often have days where the only thing relevant to my disability is the 30 seconds at night when I take my pills. Surely I cannot be disabled!

But I realized that view erases the very real aspects of my disability that I continue to experience. The periods in my past when I was more severely impaired by my disability (including my hospitalization) still exist and are still a part of me, no matter how well managed my disability is now. And the cyclical nature of many mental health disabilities means that while I’m at a relative peak now, I could find myself in a deep trough at any time. And there are limitations involved even with the minimal treatment I’m receiving – I have to make sure I have a dose of meds with me in case I sleep at a friends’ one night, I have to deal with the punishing withdrawal symptoms when I forget to take a dose on evening, I have the dry mouth and the flaky skin and the lump of belly fat that are side effects of one of my meds. (And there’s my monthly tangle with the pharmacy refill system.)

More importantly, I know that if I tell anyone my diagnosis, if they find out about the hospitalization or the 900 million hours of therapy or the meds I’m taking now, I change in their eyes. It’s easier for them to dismiss my emotions as an artifact of my disorder and thus irrelevant. It’s easier for them to patronize me because they assume I’m not capable of taking care of myself. However I think of myself, I know they will think of me as a person with a disability. (Actually, I suspect many of them would think of me as a “crazy bitch.”)

I’ve also struggled with identifying as a person with a disability because of the split between mental and physical disabilities. Even when I began identifying as a person with a mental health disorder, I still didn’t think of that as being a person with a disability. I thought people with physical disabilities focused mainly on physical access issues, which weren’t at all relevant to me. I don’t need reserved parking spaces, I can walk up stairs, I don’t need a special restroom.

Then I realized how artificial the distinction is between mental and physical disabilities. When I have a panic attack, it affects me physically. When I am depressed, I have no energy and I can’t walk up stairs. I also realized the enormous overlap – lots of people have both mental and physical disabilities, and it’s common for the treatments for physical disabilities (like narcotic painkillers) to have cognitive effects. I also started talking to people with physical disabilities and heard them concerned with much more than physical access which, while very important, is not the sole focus.

All of that is not why I began identifying as a person with a disability, though. I thought of myself as an individual struggling with a very specific and individualized problem. I know other people with the same diagnosis as me, and all of us have had very different experiences and very different approaches to treatment. So I thought of myself as an exceptionally special snowflake that had some exceptionally special difficulties for me to go through, difficulties that nobody else had or would experience. So I thought about my mental health issues as they affected me personally, how they had changed my life, how they had made me the person I am today. But because they were so inherently unique, because nobody had gone through exactly what I’d gone through, I tended to think of my disorder not even in terms of my diagnosis, but in terms of “the very special snowflake disorder that only applies to me.”

Thinking of it that way meant that all the negative reactions I got, all the judgments I got, all the dismissals and marginalizations and refusals to take me seriously, all the hoops I had to jump through to get what other people had – they were just about me. Personally. They were not about how people responded to mental health problems, they were not about how people respond to and discriminate against people with disabilities as a group, they were about ME. I had brought them upon myself because of my disordered behavior, because my special snowflake-ness was so annoying or intolerable that people had no choice but to write me off.

Amandaw recently told me that she thought of disability as a political identity and I strongly agree. Thinking of myself as part of a group of people who routinely encountered oppression on the basis of their disabilities meant that the reactions I got, the disregard, the disgust thinly veiled as pity, the refusal to deal with my emotions and ideas – that wasn’t because of me. That was because I was part of a group subjected to systemic and institutionalized discrimination and oppression. And it was wrong. But it wasn’t until I started thinking of myself as part of that group and thinking about how these systems affected all of us that I needed a term for “people who are discriminated against or oppressed by our culture and institutions in the same way I am.” It wasn’t until I started thinking of it as a group issue, rather than an individual issue, that I needed a word for that group.

These systems that oppress us don’t care one whit about my special snowflake-ness. They don’t care about how well I’m doing now. These systems exclude and marginalize and dismiss and mock me based on my disability status without taking into account any of the individual variations in my life and my disability. And when I hear a caseworker explain that “you can always tell who is crazy because they live in cardboard boxes and tell people it’s a palace and they’re the king,” it feels like a slap in the face whether or not she knows I’m disabled. It’s about the systems, the institutionalized attitudes. It’s not about me.

Even after realizing all of this, I was still reluctant to identify publicly as a person with a disability. I would share details of my mental health history and the effects of my mental health conditions, but I still wouldn’t come out and identify myself as a person with a disability. At least, until I began talking and working with the amazing women who are my co-contributors on this blog. Because that’s when I realized that identifying publicly gave me power. Gave us power. Allowed us to come together as women who experience oppression and discrimination on the basis of our disabilities. Allowed us to work together to identify and address these problems, to find others affected in the same way, and to come together to try to change things. Thinking of myself as a super special snowflake made that kind of collaboration and support impossible, because nobody could be in my special snowflake group with me.

So while I’ll always think of myself as a pretty damn special snowflake, I also now think of myself as a woman with a disability. And identifying that way has allowed me access to power and support that I don’t think I could have found otherwise.

Note: I’m going to moderate this comment thread with a heavy hand to ensure that there is absolutely no policing of disability. If I self-identify as a person with a disability, I do not owe you the information of my diagnosis, my health history, or my therapy records to ‘prove’ that I am disabled. Similarly, I will respect how others self-identify if they are doing so in good faith and expect other commenters to do the same.

Umbrella Terms

26 October, 2009101, introspective, social attitudesaccessibility, barriers to access, conceptions of disability, disability 101, invisible disabilityAnna

My pet peeve: Labeling “othered” groups as though everyone who falls under that umbrella term has the same needs to achieve full inclusion in society.

For obvious reasons, I’m going to focus on the umbrella of people with disabilities/disabled people right now, but these thoughts have been heavily influenced by reading posts from GLTB activists about trans* inclusion (or lack thereof) and blog carnivals like the Asian Women’s Carnival and International Blog Against Racism Week.

Over the summer, while I was in the process of ranting to Don about my disappointment with our current government’s inclusion of people with disabilities, I was stopped on the street and invited to a talk. “Is it fully accessible?”, I asked.

“Oh yes,” responded the person inviting us. “We have a wheelchair ramp.”

“Do you have material available in braille? Do you have a Sign interpreter?”

“No.”

“Well then,” I snapped. “I guess you aren’t fully accessible, are you?”

(As I said, I was just ranting about this when we were interrupted with this invitation, so it was already on my mind. People need to pick better times to interrupt me. I’d like to think that normally I’d be more polite.)

There’s a certain hierarchy of accessibility that “everyone” knows about. If you have a ramp, you’re good! That this doesn’t address the needs of any number of disabled people is irrelevant – the main image of people with disabilities is that person (usually white and male) in a wheelchair.

So, in the effort to be inclusive without thinking thoroughly about what disability means, and who is included when making accommodations, we end up with situations like this one, from the comments on a post on disability at Feministe:

Willow:

Fire alarms. So it’s great and all when fire alarms have bright flashing lights in addition to the blaring sound, so people with hearing loss (like my dad) will know if the alarm goes off and be able to evacuate, right? Yeah, well, it so happens that I have photosensitive epilepsy, and the light on pretty much every alarm cycles on a frequency that triggers my seizures. So if the alarm goes off, not only do I have a seizure, which sucks in the first place, but I also cannot evacuate the building because I am either (a) unconscious and convulsing or (b) in “zombie mode” and unable to navigate the world safely.

…

I always feel so, so guilty about advocating for accommodations for people with epilepsy that will make the place unsafe for people with other disabilities…but at the same time, I have EXACTLY THE SAME RIGHT to be able to be there and/or be safe there. It seems as though some types of disabled people–deaf, blind, and/or in a wheelchair, in particular–are privileged over others. I lived on campus as an undergraduate, and when the school installed a new fire alarm system that included flashing lights, I was told that they would have someone “come check on me” whenever the alarm went off. Excuse me? You can’t have someone come check on the zero deaf students in the building but the three of us with photosensitive epilepsy have to wait until the fire department shows up? Not to mention the risks that come with having a seizure in the first place (such as, for example, death)?

Thoughtless accommodations, but gosh darn it, we’re “accessible”.

I know next to nothing about epilepsy, and my knowledge of deafness is limited, so I have no idea what sorts of accommodations would balance both the need for a flashing alarm and the need not to cause seizures in people. But that’s not my point. The point is that full inclusiveness, rather than going for the “easy” solution, would actually consider those needs and work them both in. It would be working with people with disabilities to design safety systems that would accommodate everyone. (Deaf people can also have epilepsy, after all.)

Grouping “othered” populations under this umbrella term allows the “general” population to decide “Oh, I’ve included a ramp, I’ve got a flashing light, and there’s braille on my elevator buttons, I’m set.” But we don’t all have those needs.

We’ve been grouped together as having the same needs both because it’s easier for the “general” population to decide they’ve “done enough”, and because we have greater strength in both self- and group-advocating when we band together. But, just like when other “othered” groups band together, things get left out, put aside, maybe next yeared.

I’m still mulling all of this over. My main activism-related issues are The Big Ones – my city is full of “just one steps” and has a serious lack of Sign Language interpreters. But right now, I’m sitting in a room with fluorescent lighting (severe migraine trigger). It looks like the fire alarm is of the flashing-light type. The door is pretty darn heavy. I haven’t seen a single TTY- pay phone on campus. And probably several other things that I’ve missed.

It’s almost like the easiest, umbrella-term solution isn’t the best one.

I’m still thinking about a lot of this stuff – I certainly don’t have all the answers. Feel free to get into it in the comments. (My schedule is such that I won’t be able to respond to anything until evening my time at the earliest, although other moderators will be approving comments for me.)

Focusing on College Students’ Mental Health (For the Benefit of the Neurotypical)

26 October, 2009media and pop culture, mental health, social attitudes, violenceabby jean

I live in Los Angeles and the local papers have been abuzz about the recent stabbing of a UCLA student by another student during science lab. Apparently a professor reported concerns about the alleged attacker’s mental health about 10 months ago. And so, according to the LA Times:

The recent arrest of a UCLA student in the brutal stabbing of a classmate in a campus chemistry lab has again focused attention on an issue that gripped the nation after the 2007 massacre at Virginia Tech: the mental health of troubled college students. The Virginia Tech shootings, which left 32 victims and the gunman dead, raised difficult questions about how a disturbed student could have been allowed to remain at the school despite danger signs. The Virginia Tech killings were followed last year by a deadly attack at Northern Illinois University, in which a former graduate student killed five students and himself.

So – to be clear – the focus on students’ mental health has the primary goal of identifying students who are at risk of violent attacks on other students and staff. And presumably treating or confining them. While protecting the safety of students and staff is unequivocally something that a school should be doing, characterizing that goal as “focusing on college students’ mental health” ignores violent crimes against staff or students committed by people without mental illness. It also does a vast disservice to the vast majority of students with mental illness who are at zero risk for committing premeditated violent crimes.

The US Department of Justice estimates that there are 34,000 violent crimes committed against college students on college campuses every year. Most of those were non-fatal, there were 20 on-campus murders in 2000 (there were about 1800 rapes in the same year). While it’s likely that some of those violent crimes were committed by a student with a mental disability, the vast majority of them were not. It’s certainly more likely that a college student who is a victim of violent crime is affected by one of these “garden variety” crimes than something like the incidents in the article – of which there have only been 3 since 2007.

Additionally, the message that focusing on mental health is solely to prevent these incidents marginalizes and harms college students with mental illness who aren’t ever going to kill or physically attack anybody, much less bring a gun to class and start shooting randomly. Those students are being told that people with mental illness are scary and dangerous and need to be found right away so they can be kept away from other students.

Many colleges now require a mental health assessment for a troubled student to stay enrolled and more readily expel those who refuse to comply, said Brian Van Brunt, president-elect of the American College Counseling Assn. who heads the counseling center at Western Kentucky University.

There are a whole lot of things wrong with this. First, it’s very unclear who will be subject to this kind of review – who counts as a “troubled student”? Once a student is required to undergo this review, they’re required to subject to a psych assessment and disclose past traumas, sexual assaults, all kinds of things to the college administration, at the threat of expulsion. And the implication is that if the college doesn’t like the outcome of the mental health assessment, the student might be expelled on the basis of their mental health status.

This gives students a huge incentive to stay quiet about their mental health concerns, to hide them. Going to student health for psych counseling might trigger a review by the administration to see if a student was too sick to be at school. Talking to an RA might result in a report to student services. Even fellow students might report you to be psychologically reviewed by the administration. And it’s not at all clear the colleges are that enthusiastic about keeping these students around:

Colleges try to retain students if they are not violent, said Keith Anderson, chairman of the American College Health Assn.’s best practices task force in mental health. “The goal is to keep them in school, keep them functioning and engaged, and in treatment at the same time,” said Anderson, who is a staff psychologist at Rensselaer Polytechnic Institute in Tory, N.Y

“Try to retain students if they are not violent” is a far cry from “affirmatively and eagerly addresses the mental health needs of students.” It sounds an awful lot like “will tolerate those students, I guess.” And that message is having an effect:

In a recent survey of campus health officials, the American College Counseling Assn. report noted “growing intolerance by faculty and others about students perceived to be odd.”

“Maybe if we shun the weirdos, they’ll leave before we have to expel them!” It’s clear that this focus on mental health is not at all for the benefit of those college students with mental illness – it will affirmatively interfere with their ability to get support and treatment. It will make things worse for them. So the only motivation for this increased focus on mental health is to protect the neurotypical from the violent attacks from individuals with mental illness, who are considered universally dangerous and deserving of suspicion. This new focus is for the comfort of the neurotypical, at the direct expense of students with mental illness.

Depending on narcotics

23 October, 2009blaming, bodies, language, medical practice, shaming, social attitudesableism, addiction, barriers to access, Big Bad Pharma, chronic illness, chronic pain conditions, conceptions of disability, disability, drugs are bad mmm'kay, fibro, fibromyalgia, health care, invisible disabilities, invisible disability, life, medical care, medications, mislabelling, myths and misconceptions, pain management, problematic attitudes, social policy, social treatment, symptoms, things people sayamandaw

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.

Ableist Word Profile: Intelligence

23 October, 2009101, Ableist Word Profile, activism, blaming, class issues, feminism, identity, intersectionality, justice, language, mental health, military, normality, shaming, social attitudesableism, exclusion, intersectionality, justice, language, privilege, racism, word usekaninchenzero

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.

Wait! you may be saying to yourselves. Kaninchen Zero, what the hell is ‘intelligence’ doing in the Ableist Word Profile series? Intelligence isn’t a disability!

Okay, so maybe you’re not saying that. But I’m serious. I hate this word. Hate the concept. With a hatred that is a pure and burning flame. True, part of this is because I get told all the time that I’m like wicked smart. When it’s some of the more toxic people in my family saying it, there’s more to it: You’re so intelligent so why are you poor? Other people use it as an opportunity to put themselves down: You’re so smart; I’m not; I could never do the things you do.

Does intelligence exist? At all?

Maybe it doesn’t.

There are tests that measure… something. They’re called Intelligence Quotient tests. The idea is that these tests actually measure some fundamental, real quality of human cognition — the people who believe in IQ believe that there’s a single quality that informs cognition as a whole and that people who have higher IQs have more of this and think better and perform better generally while people who have lower IQs have less of this quality and perform more poorly. Sorry; it’s a muddle of a definition, I know. Partly it’s a conceptual and linguistic problem — some things are not well defined and these things tend to be the things we consider to be fundamental. It’s much easier to define smaller things at the edges; it’s easy to define a fingernail. It’s harder to point to where blood stops flowing away from the heart and starts flowing back towards it.

The man who developed the first intelligence tests, Alfred Binet, wasn’t actually trying to measure intelligence. He’d done some work in neurology and psychology and education, and in 1899 he was asked to become a member of the Free Society for the Psychological Study of the Child. Primary education in France had become mandatory, so a lot of work on educational psychology was being done due to the large demand and the large available sample population. Binet, and others, were assigned to the Commission for the Retarded. (Again, please accept my apologies; I wouldn’t use the word if it were mine.)

The problem he was trying to solve was how to identify — consistently, without having to rely on the judgment of people who could be swayed by all sorts of personal biases (as we all are, including me) — those children who needed extra help. Maybe they had developmental disorders, maybe they had learning impairments along the lines of ADD/ADHD, dyscalculias, dyslexias, maybe malnutrition, injury, or childhood disease had caused neurological damage or limited development. The specific etiology wasn’t the point; the point was to be able to know who these children were and get them assistance. Which may be ascribing too-noble motives to him, but he doesn’t do so great later. Continue reading Ableist Word Profile: Intelligence →

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.

“But what do we CAAAALL them?”: The language of shackling

19 October, 2009language, media and pop culture, social attitudeslauredhel

[This has been cross-posted at Hoyden About Town.]

I don’t know who David Southwell is when he’s at home, but he’s showing his arse big-time over at his “Sub in the Pub” blog at news.com.au, a large Australia news organisation that is part of News Limited (Rupert Murdoch).

Following up on the story about the man abandoned to cool his heels on Mount Snowdon, Southwell agonises about the “Language of disability“. He mentions that someone in comments requested that journalists stop using the term “wheelchair bound” – a simple and common request any experienced writer should be well aware of. (Read more at Accessibility NZ if you’re unaware of this issue.)

But Southwell seems to decide that this is all a bit scary and difficult to understand, and drops this:

While avoiding pejorative terms is certainly desirable, I also think euphemisms such as “differently-abled” aren’t that helpful and open the whole subject to ridicule.

However if we (I mean the cliche-recyclers) take on board Paul’s point, a better term would be “wheelchair-restricted”?

Fwooooosh!

He’s completely missed the point. He’s very, very stuck in this idea that only terms referring to restriction and binding could possibly be appropriate when referring to a person with a disability. His go-to idea is one of passivity, of shackling. And when he’s told that one term is problematic, he just – looks for a synonym with the same problem, instead of addressing the problem itself.

In comments, I reply simply:

You don’t need to use terms relating to binding or restriction at all. “Person who uses a wheelchair”. “Wheelchair user” for short.

And I figured that would be the end of it. A wheelchair is a tool. A PWD with certain mobility deficits may use one to get around. The term is non-pejorative and descriptive. What’s to argue?

But no, apparently it’s not that simple in the mind of someone whose mind relentlessly associates “disability” with negative ideas. He comes back:

I might go with this, although I think it suggests there is a choice involved and it almost sounds recreational.

Unfortunately in journalese, “user” normally follows after “drug”.

What?

“Wheelchair user” no more connotes a recreational choice than “hammer user” or “computer user” does. You need to bang in a nail, you don’t happen to have a large iron hand, so you use a hammer to achieve your goal. You want to send an email, you don’t happen to have a computer chip and meatwires installed, so you use a computer to achieve your goal. You need to get around, you don’t happen to have legs that hold you up and propel you (or you have other issues like orthostatic hypotension, etc), so you use a wheelchair to achieve your goal. Why is this so difficult for some people to grok?

And why on earth, seeing the term “wheelchair user”, does someone feel the need to leap to the idea of drug abuse?

My reply:

David, your own news organisation uses “user” far more often to talk about people who use software, computers, and gadgets than to talk about drug users. There are also quite a few hits on “wheelchair user” on a news.com.au search, and no one seems to have panicked yet about your particular, and frankly rather bizarre, concern.

You don’t need to hair-tear publicly about this. Just look up a style guide. There are plenty; your own org probably has one. Here’s one option dealing specifically with disability [RTF download].

Have you had this conversation recently? Did your interlocutor(s) fail to understand the difference between tool use and restriction, hindrance, and hobbling? What’s your journalistic bugbear when it comes to reporting about people with disabilities?

Ableist Word Profile: Retarded

16 October, 2009101, Ableist Word Profile, social attitudesabby jean

Let’s start by looking at various definitions of the word, so we know what we’re talking about. “Retard” can be used as a verb, when it means “to make slow; delay the development or progress of (an action, process, etc.); hinder or impede.” It can also be used as an adjective, when it means “characterized by retardation,” which in turns means “slowness or limitation in intellectual understanding and awareness, emotional development, academic progress, etc.” Finally, it can be used as a noun, when it means “a mentally retarded person.” The word is disparaging and problematic primarily when used as an adjective or noun, so I’m not concerned with people who say things like “embalming mummies was a method of retarding decomposition over time.” Similarly, I’m not concerned with phrases like “fire-retardant pajamas.” I am, though, significantly concerned with people who use the term as a noun or adjective meant to disparage and insult a person, idea, or argument.

Etymologically, the word traces back to Latin roots retardationem, and retardare, meaning “to make slow, delay, keep back, hinder.” It’s the same root as “tardy,” meaning late. This first recorded instance of using the word to mean mentally slow didn’t occur until 1895, and use of the word as a disparaging insult didn’t occur until much later, one source saying the 1960s, another citing a book from the late 1950s where a character discussing Playboy magazine said “that Hefner jazz is for retarded jockstraps.” In either event, it’s a relatively recent development that the word is used to attack and disparage others. Coincidentally (or is it?), it was around the 1950s or 60s that the American medical profession began referring to the psychological condition as ‘mental retardation.’ Before then, the condition had been termed ‘mental deficiency,’ ‘feeble mindedness,’ or simply ‘idiocy.’

In current psychiatric practice, the term “mental retardation” is a medical definition, outlined in the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM). (Sorry I can’t link to this – am referring to my own copy. To my knowledge it’s not available in whole online.) The diagnosis requires an IQ score, but that is not the sole factor — it must be accompanied by significant limitations in adaptive functioning in the areas of communication, self-care, home living, social or interpersonal skills, self-direction, functional academic skills, work, leisure, health, and/or safety. Additionally, the onset must be before age 18. The DSM notes that individuals with mental retardation usually present with impairments in adaptive functioning – difficulty coping with the normal demands of life or meeting the standards of personal independence expected of someone in their particular age group and sociocultural background. An individual’s IQ score determines with which of the four subtypes of the disorder an individual will be diagnosed: mild (55-70), moderate (35-50), severe (20-35) and profound (below 20). About 85% of individuals diagnosed with the disorder are in the “mild” category. Importantly, the DSM notes that “no specific personality and behavioral features are uniquely associated with mental retardation.”

This medical definition is certainly not what’s intended in contemporary uses of the word. If I say “I saw Zombieland and it was totally retarded,” I am not saying that I think the movie had a low IQ and I observed significant limitations in adaptive functioning. (That doesn’t even make sense.) I am saying that I thought the movie was bad, uninteresting, boring, nonsensical, repetitive, and a waste of my time and money. But for me to mean any of those things by using the word “retarded,” I and the person to whom I’m speaking have to share the assumption that being retarded is bad and that people who have mental retardation are stupid, uninteresting, and a waste of my time. Similarly, if I say “LAPD Chief Bratton’s views on homeless policy are retarded,” I mean that they are poorly informed, poorly thought out, and will be ineffective. For me to mean that, the person to whom I’m speaking has to share the assumption that people with mental retardation are poorly informed, think poorly, and will be ineffective.

The term is used so broadly in contemporary conversation that usage is no longer based primarily on assumptions about specific behaviors of people who have mental retardation – just the general assumption that retardation is bad, something to be avoided, and things, ideas or people described as retarded should be excluded from the attention of non-retarded people. At this point, the connotation is simply “that’s bad and you should ignore it.” (See the Urban Dictionary entry for the term, which describes it as meaning “bad” in literally hundreds of different ways.) And that is ableist – using a word that not only describes but is the actual medical diagnosis of a mental disability to mean “bad and ignorable.” Using the term reinforces the implicit assumption that mental disabilities are bad and that people with mental disabilities should be excluded and ignored because of their disabilities. And that affects all people with mental disabilities, not just those diagnosed with mental retardation or another developmental disability. (Although it is especially difficult for family members of people with developmental disabilities.)

In the past year or so, I’ve been making an effort to eliminate this word from my vocabulary. And it’s hard. I hadn’t realized how common a word it is until I started paying attention to it, and then I saw it absolutely everywhere, and heard it come out of my own mouth. (I stop myself, apologize, and substitute another word.) There are movies like Tropic Thunder with whole plotlines about “going full retard.” Blogs use it with regularity. I guarantee that now that you’re aware of the word, you’ll notice it in more places than you ever imagined. You might want to consider reading more about or even supporting organizations trying to increase awareness of the word and encourage people and the media to find other words, such as The R Word Campaign and the My Words Matter Pledge.

Some alternative words: bad, awful, silly, poorly reasoned, dunder-headed, illogical, ineffective, inefficient, uninteresting, etc, etc.

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.