Category Archives: blaming

“Bad Cripple”

Last month, I went to a non-partisan Campaign School, where women learned the nuts and bolts of running a winning campaign for political office in Canada. We all said a bit about ourselves, and I stood up and introduced myself as a Disability Rights Activist.

I spent the rest of the weekend being told how “Bad Cripples” are ruining the system for everyone else, and how every problem that I discussed, from how low disability-support payments were to how difficult it is to get around the city with a wheelchair, was caused by That Person.

You know That Person. The one Everyone Knows who doesn’t have a real disability. They could work – of course they could! – they’re just in it to scam the system. This One is bad because whatever he claims about his disability, it’s obviously exaggerated because no one could be in that much pain. That One is bad because she decided to move to another province where the disability support payments are better – obviously she’s just in it for the money.

Regardless of where someone fell in the political spectrum, they felt it very important that I knew that it wasn’t the government’s lack of support for people with disabilities and their families, it wasn’t the surplus of societal barriers, it wasn’t even their own individual fears of disability that caused any financial distress. It’s those Bad Cripples who scam the system and totally ruin it for the Good, Deserving Ones.

People tell me anecdotes about Their Friend (or a Friend of a Friend) who totally confessed to scamming the system, or they tell me about how Their Friend isn’t really disabled, and they can tell, because of X, Y, or Z.

I’m going to confess something to you: According to the way a lot of people define “Bad Cripples”, Don and I are really Bad Cripples.

I’ll start out with the comments. Both of us have very bleak senses of humour, and both of us (me especially) say some of the most awful things. These include things like “I just married him for the disability cheques,” “Damn it, I should have lied and told everyone your Cancer spread so I could get extra time to finish my assignments,” “Oh, Don fakes not being able to talk very loudly so he doesn’t have to deal with the Student Loan people”, and even “Oh, the wheelchair’s just for show.”

You might be thinking “That’s obviously you joking around, Anna! No one really thinks you’re serious.”

Yes, yes they do. All the time. I’ve been talked to by professors about my joking comments about Don’s Cancer, and asked not to make them in front of other students. I’ve gotten really angry @replies on twitter about some of them. I have an email I can’t quite get myself to delete that’s all about how I’m a horrible wife who’s just using Don for his money.

I have no doubt that people have said, either to you or someone you know, something that sounds like they’re just gaming the system, including a breezy “Oh, I’m just gaming the system.” But you have no idea if they’re serious or not, or what their circumstances are, or how much pressure they’re under, internally or externally, to “pass for normal”.

The second reason people think of “fakers” is the “I know stories of people who don’t have real disabilities and they get all this financial support!”

Here’s the thing: I don’t have an obligation to tell you what my ability status is.

My ability status is between me and my doctor. I have made the choice to share it with a few friends, and my husband. I don’t have to tell you. I don’t have to tell my teachers. I don’t have to tell the pharmacist, the person who’s demanding I justify my tax-status, or my landlord. I have not discussed it with Student Accessibility Services on campus. I have not disclosed to the people on any of the committee meetings I’m on. I didn’t tell anyone at Campaign School.

Because it is none of their business.

I do not owe it to you, or anyone else, to explain why we’re raking in those big disability cheques.

I also want you to consider that you don’t always know what disability will look like.

You can’t tell by looking at my friend with the mental health condition that she tried to climb out a third floor window and jump because she couldn’t take the idea of another day at her job, but you can probably tell she isn’t working right now while she recovers from the experience. You can’t tell by looking at my friend that she was bullied so badly at work that she has panic attacks whenever she thinks of stepping foot in the neighbourhood of her former workplace. Until Don got his cane, and then his wheelchair, lots of people wanted to know why he wasn’t working – aren’t people who have mobility issues always in wheelchairs?

I know people who tell me “Bad Cripple” stories are trying to be helpful. They want me to know that they understand how difficult it is, and that if it weren’t for all those Bad, Faking Cripples out there, Don and I wouldn’t be living entirely off the largess of his family and my scholarship money. (The government expects that I should take out student loans to pay for Don’s medication that he needs to live. Oh goody – overwhelming debt in exchange for a husband who lives! Thanks, Nova Scotia! You continue to be awesome. Yes, the big disability cheques comment was a joke.) What I think they don’t want to do is question why it is so difficult. Bad Cripple stories give us someone – a conveniently faceless group that Doesn’t Include Us – to blame.

I think a lot of people are going to rush to tell me stories about how this all may be true, but they totally know of this person who is totally lying about being disabled. Please consider whether or not that anecdote will contribute to a conversation, or just remind people with disabilities that they’re viewed with suspicion and have to prove their status to you.

Getting It Wrong: Rate Your Students and Ableism

[Possible trigger warning for upsetting and ableist language]

As some of you may know, I am a graduate student getting my Master’s Degree in Women and Gender Studies. I currently have vague career aspirations of getting my PhD or at least remaining in academia in some capacity; my academic interests primarily have to do with feminist disability theory and the body.

I was an undergrad when I discovered Rate Your Students, a blog for college professors and TAs to rant, with anonymity, about the wonderful world of academia–including its apparent hordes of clueless undergrads. I can’t quite remember how I stumbled upon it, but I found it very refreshing. I was probably what the RYS denizens would call a “special snowflake”, or “snowflake” for short–that is, an overeager student who is convinced of zie’s own specialness (however, my low self-esteem may negate such a categorization)–but I found the site a welcome break from dealing with fellow undergrads at my school, many of whom, I felt, fit the “snowflake” categorization perfectly.

Given my disability and resulting limited energy, during this time I was  privately contemptuous of those whom I percieved to be slacking and getting away with it, particularly when I was assigned to work with them on group projects or in discussion cohorts. Inevitably, I would be the one who led the group in discussion–even when I had been the only one to have done the reading–or the one who would do most of the “group” project planning and resulting work. I do not say this to toot my own horn; this information is meant to be context for the reasons that I started reading RYS in the first place.

After this week’s posts on accommodation(s) for students with disabilities, however, I am seriously rethinking my earlier enthusiasm for the site. One professor sent a query to the other readers of the site:

How do you teach a student…who clearly has severe intellectual developmental issues? How do you make sure the other students aren’t held back? What if your course is a small seminar course, not a large course? You have to spend a lot of one-on-one time with one at the expense of several. Why doesn’t the university provide resources for you and this student?

Am I bad teacher for not knowing how to deal with this? Or for not wanting to?

The responses are a motley bunch (the [+] markers denote different responses from different folks), ranging from the awesome to the somewhat reasonable to the awful:

Anyway, I don’t think too much of students who come to me with a letter demanding time-and-a-half on tests. Nor do I pity the poor fucktards when I think of their asking a future boss for time-and-a-half on a project. There are some students who are truly disabled, and truly need accommodations. But ADD is a sad joke. It puts us at the beck and call of every spoiled tool whose parents can find a quack to label the kid as ADD.

I am an academic. I am also a person with disabilities. I know, furthermore, that “difficult” students exist, and in some cases, universities do not provide clear policies for faculty when dealing with students with disabilities. Professors, however, are not usually assigned to be the disability police, and with good reason (see above). From the glut of postings on this topic, the message that I am getting–as a person with multiple disabilities, both physical and other–is that I do not belong in the academy. People with severe emotional or mental health issues, apparently, do not belong in the academy because they freak out the “normal” folks. Furthermore, if I choose to disclose my disability to faculty, I may be subject to disbelief and doubt, due to their past experiences with disabled students. Hell, someone might even rant about me on RYS if I piss them off enough!

I respect the fact that RYS is a site for professors to anonymously vent; all of us need those spaces. Some of us, however, are both hopeful professors and people with disabilities.  Privileged displays of ableism like the above are asking some of us to side against our own, which many of us cannot do.

Invisible Illness and Disability Bingo 1.0

Author’s note: This is a revised version of a bingo card that I made some time ago.

While I don’t feel like I should be required to justify the lowermost right square, there was some confusion and pretty ooky pushback when I posted version 1 on my own blog. I’ll explain that square anyway, for CMA purposes: I am aware that pot works for many people with chronic pain, and personally have no issue if people other than myself use it. I’m an advocate of finding what works for you; whether it’s a pill, plant, pilates-esque routine, or something else, your course of pain management should be your choice.

What I am referring to with this bingo card — as a whole — is the commonplace, rather irritating tendency of some able-bodied people to suggest — without knowing about the medical history of (or, indeed, much about) the person they are “trying to help” — remedies or treatments that may be totally inappropriate for that person, due to various (personal) reasons. In short, what works for you may not work for me, and vice versa; how I wish I could have articulated this to the folks who have “helpfully suggested” that I smoke pot or obtain other illegal “meds” to help with my pain!

Okay, explanatory note/rant over. Onto the bingo card! I hope you all have your chips ready.

Special thanks to Ouyang for suggesting the “Diet and Exercise!!1” free space.

annaham-iibv1

Text translation: card has white text on a black background. Title (in white) reads, “annaham presents: Invisible Illness Bingo 1.0,” followed by “Now With Straighter Lines” in red:

First Row, Square #1: All that’s keeping you from being healthy is a positive attitude!

First Row, Square #2: My ex/friend/co-worker had that, but he/she was just a hypochondriac.

First Row, Square #3: Maybe if you lost weight/found a man/read The Secret, your problems would be solved.

First Row, Square #4: Why can’t you just suck it up, get out of bed, and find a job like the rest of us?

Second Row, Square #1: Lucky! You get to stay in bed all day.

Second Row, Square #2 (middle square): Free Space/DIET AND EXERCISE!!!11

Second Row, Square #3: You don’t look sick/you’re just complaining too much

Third Row, Square #1: Obviously, you get something out of being sick. Otherwise, you’d get better!

Third Row, Square #2: If I haven’t heard of it, then it doesn’t exist.

Third Row, Square #3: But I went through hard times too, and I got through it. Let’s talk about what a great person I am.

Third Row, Square #4: You have it so much better than some people! Think of the starving children in Africa…

Fourth Row, Square #1: Let go and let God/Power of prayer/God is punishing you

Fourth Row, Square #2: You just want an excuse to be lazy and have people pity you.

Fourth Row, Square #3: Why haven’t you tried crystals/vitamins/other dubious “cure”? IT REALLY WORKS!!!

Fourth Row, Square #4: Smoke pot/take illegal drugs. It will totally take care of your pain, man!

Also posted at Ham.Blog

Depending on narcotics

IMG_0172I 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

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

(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.

CFS/ME and “faulty illness beliefs”: The incredible hubris of the psychiatro-patriarchal complex

This post was originally posted on March 19, 2009 at Hoyden About Town.

New Scientist this week published an interview with infamous psychiatrist Simon Wessely. Wessely persists in believing, in the face of all the evidence, that Chronic Fatigue Syndrome/Myalgic Encephalitis (CFS/ME)* is a uniquely UK/American psychological condition caused by internet-triggered “faulty illness beliefs”.

Here’s a bit. Read the rest at the link.

Mind over body?

Can people think themselves sick? This is what psychiatrist Simon Wessely explores. His research into the causes of conditions like chronic fatigue syndrome and Gulf war syndrome has led to hate mail, yet far from dismissing these illnesses as imaginary, Wessely has spent his career developing treatments for them. Clare Wilson asks what it’s like to be disliked by people you’re trying to help.

How might most of us experience the effects of the mind on the body?

In an average week you probably experience numerous examples of how what’s going on around you affects your subjective health. Most people instinctively know that when bad things happen, they affect your body. You can’t sleep, you feel anxious, you’ve got butterflies in your stomach… you feel awful.

When does that turn into an illness?

Such symptoms only become a problem when people get trapped in excessively narrow explanations for illness – when they exclude any broader consideration of the many reasons why we feel the way we do. This is where the internet can do real harm. And sometimes people fall into the hands of charlatans who give them bogus explanations. […]

Continue reading CFS/ME and “faulty illness beliefs”: The incredible hubris of the psychiatro-patriarchal complex

The Negative Side of Positive Thinking

“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)

“What can I do?”

Access is an all-consuming endeavor in a disabled person’s life. I love that the disability community learned to frame it that way: it emphasizes that the problem is not the person, their body or their condition; the problem is society’s indifference.

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

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

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

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

But what can you do?

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

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

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

1. The elevator.

2. The escalator (in the math building).

3. The stairs.

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

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

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

So: Why couldn’t I use the elevator?

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

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

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

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

Anyway.

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

So: Why couldn’t I use the escalator?

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

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

Everyone.

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

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

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

Right.

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

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

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

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

Ill

The topic of mental illness came up again with the latest large-scale hate crime against women to make national news. It’s a nice easy narrative for George Sodini to be a psycho, to be crazy, to be mentally ill because then we don’t have to understand him. We don’t have to relate, because we’re not like that.

Thing is, we’ll never know if Sodini was mentally ill or not. We can’t tell from what he left behind, and he’s no longer around to ask. The things he wrote aren’t all that unhinged; he just took the workaday hatred of black people and women that is everywhere in our society and picked up a gun and went hunting.

And the mentally ill means violent narrative is false anyway. Mental illness correlates with an increased risk of being a victim of violent crime, not of committing it.

It’s been said before, but it bears repeating because there’s so much silence and stigma and ignorance surrounding mental illness. I’ve had kind of a lot of experience with mental illness and the mental health professions. Some of it may be triggering.

I have taken (in no particular order) Prozac, Zoloft, Paxil, Effexor, Serzone, Xanax, Ativan, Risperdal. I’ve self-medicated with alcohol a lot and smoked cannabis and taken LSD when I could get it. I have been diagnosed, at various times, with clinical depression, bipolar type I disorder, bipolar type II disorder, borderline personality disorder, post-traumatic stress disorder, gender dysphoria disorder, depressive psychosis, and paranoia. I strongly suspect that I have Asperger’s Syndrome, which would explain a lot of my symptoms, behaviors, and difficulties. I have spent time in private and public psychiatric hospitals and spent years in weekly or twice-weekly therapy. I have damaged myself in ways ranging from very small — pulling on my hair repeatedly — to very serious — shooting myself in the left hand between the third and fourth metacarpal bones. I still have PTSD-like symptoms from the last and from growing up in an abusive environment, though episodes of it get farther apart as time passes. I have had suicidal thoughts that became elaborate plans. There were times that the only thing keeping me alive was someone needed to feed the cat. I am not alive for big important reasons; I am alive for small stupid reasons. I am alive because I didn’t want whoever found me to suffer the trauma of it. I have suffered delusions and intrusive thoughts and I have always had minor hallucinations (words printed on a page are red instead of black, patterns on a floor or wall shift while I look at them). I often have trouble understanding people when they talk and try to pass it off as being hard of hearing. I’m not; I hear fine. I have trouble processing auditory information and especially picking conversation out of background noise.

You’d think I was dangerous. I’m not. Really. I’m not even dangerous to me. Damaging myself — like it is for so many people who self-harm — is a way to stay alive, to cope with trauma. I have better ways to cope now and I don’t do that any more, but sometimes when I’ve had a really hard day and I hurt a lot and the noise in my head is very bad I remember how comforting it was to draw a blade across my arm, to feel the skin part, to see the blood well up, and how it made the noise go away for a while. Maybe it makes me crazy, but that is a warm fond memory for me. And it is what I needed to do when I needed to do it. I have the same memories about smoking, and I don’t do that these days either.

I’m much better now than I was. There are long periods where I don’t need psychiatric meds at all. But I am not cured and I never will be. I will always have mental illness in my life, just as I will always have fibromyalgia and physical pain. I’m back on an SNRI now and it’s helping and that’s good, because I could feel the old illness patterns coming back. Things have been bad lately with the economy. But I’ll be okay. I know how to cope with the bad things in ways that aren’t so drastic. There are people I can ask for help. I’m not alone.

Even if I am crazy.