Monthly Archives: October 2009

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.

Disability and Sexuality 101, or, Do disabled people have sex?

25 October, 2009101, bodies, sexualitymyths, sexChally

Of course! That is, some of us do, but there’s nothing about disability that means we don’t ever have sex. As with any other group in society, some of us are sexual and some of us are asexual. Some of us are celibate, some of us are in steady sexual relationships, some of us like a one night stand. Which is to say, we’re far from being a sexual monolith! (… as it were.)

The reason PWD aren’t considered as sexual – particularly “visibly” disabled PWD – is that the idea of “the perfect body” as the only sexual body dominates popular discourse. Additionally, we have the stereotypes of PWD as pathetic or stoic, far removed from the sexual. Not to mention the fact that disabled people tend to be shoved away from the general public. This idea is not due to some inherent aspect of disability that negates sexuality, it’s just bigotry. The lack of recognition for PWDs’ sexuality has meant, less so in recent years, that a lot of PWD aren’t given appropriate sex education. Without proper sex ed, it’s harder to take charge of one’s own sexual life and body. This lack of information has its role in enabling the high rates of abuse against PWD. There is a lot of horrific policing of the bodies and sexuality of disabled women in particular, as you’ll read about on this blog in less 101-type discussions.

When those PWD who are sexual are seen as such, it’s often to the exclusion of many modes of sexuality. Remember, disabled people, like non-disabled people, have all sorts of sexualities that can change throughout life. We can be queer and straight, poly and mono, kinky and vanilla (which is not to say that all of those are exclusively sexual identities, either). Not everyone is into or can have PIV intercourse, and all kinds of sexual activity are as legitimate as the participants consider them to be. And, of course, implicit in the question ‘Do disabled people have sex?’ is the question ‘Do disabled people have partnered sex?’ As such, that’s the question I’ve been answering, but it’s best not to forget that masturbation is fun, too!

There’s another myth that PWD only have sex with other PWD. This is based on the assumption that no one “normal” would want to have sex with someone who doesn’t fit into rigid norms. Sex isn’t just for young, white, abled, straight couples, no matter what TV tells you. Of course, the idea that sex with disabled people isn’t ideal means that it’s sometimes harder for disabled people to find sexual partners. To which I say, people with that kind of bigoted attitude are missing out on some really great sex.

Disability often influences a person’s sex life, as it does many other aspects of life. (Not to mention framing disability as this overarching barrier to sex obscures the fact that, you know, other factors have their role in how and if a person is sexual.) Pain or fatigue or physical features, for instance, can have an impact, but that doesn’t mean PWD are never sexual. Because there are so many different types of disability – and some people have multiple disabilities – there are lots of different changes PWD and their partners might make to make sex possible, easier or just more fun. This could include clear communication when a partner has an anxiety disorder, assessing which positions are most comfortable with a particular body shape, adapting sex toys for people with limited motor control and a whole range of things.

Disabled people’s sexualities exist, and are quite as varied and wonderful as those of non-disabled people.

Disability Is …?

24 October, 2009identityableism, accessibility, autism, cfids, cfs, chronic fatigue syndrome, chronic illness, chronic pain conditions, conceptions of disability, difference, disability, disability movement, exclusion, fibromyalgia, identity, intersectionality, invisibility, invisible disabilities, invisible disability, isolation, language, mental illness, models of disability, participation, passing, privilege, self-identification, self-perception, social inclusion, social model, social treatment, symptomsamandaw

(Originally posted July 2009 at Feministe, three rivers fog.)

We had a really good discussion about nondisability. It got derailed, a bit, because it depended on our ability to reasonably define disability. And it’s a subject that has come up in every discussion we’ve had these couple weeks. What is it?

I advocate an intentionally overbroad definition of disability. And I definitely see a tendency, with certain medical conditions, not to identify — on that inner level, what “feels right” — as disabled.

I support every person’s right to self-determination, to define their own experiences, and to identify however feels most right for them. I do not want to try to pressure people into identifying in a way they do not feel comfortable. But I do think that part of this tendency, this reticence, is rooted in a sort of ableism. Not ableism as in “internalized negative feelings about PWD” — but ableism as in “a certain understanding of how the world works and how society is/should be structured” … or, you might say, a certain model.

I want to explore a few things — explore our assumptions behind the word “disabled.”

Think, for a minute: visualize a disabled person. Just a generic idea of a disabled person. What would you say are the requirements to qualify as disabled?

Do you have to be disabled — in a dictionary definition sort of way? Disabled, unable, incapable? Unable to work, or unable to participate in social activities, or unable to take care of oneself? Is there a certain level of un-able-ness one must reach to qualify as disabled?

If so, what do you call the people who don’t reach that level — but who share many, if not all of the exact same problems with accessibility in society, who face the same obstacles in their path, the same ignorance and hostility? The people who have the same condition, but face different accessibility problems because they are trying to navigate the workplace, living independently — who are able to do these things — but who still have to fight with the outside world to be able to live their life how they want to?

Are these people disabled? No? Are they abled, then? Are they privileged over the people who meet that level of un-able-ness?

Am I “temporarily able-bodied” because I can push myself enough to work full-time?
Because I can walk? Drive? Prepare meals? Go to sports events and concerts?
What about the fact that I still have to fight with my doctors over medication? That I still have to approach HR at work to tell them about everything I need to be able to work there?
What about the fact that without the drugs I am taking and my TENS machine and my access to health care and workplace accommodations and accessible parking, all of a sudden I wouldn’t be able to do those things anymore?

Is my disability about my inner feelings when I get home and slouch in pain — is it about what is going on in my body? Because I still have pain, whether I am well-treated and working or untreated and housebound. I still have fatigue. I still struggle when I stand up from a sitting position, still need help getting out of the car if I haven’t taken at least a few painkillers already that day. All that stuff is still there.

Or is it that my disability something beyond me — not having to do with me at all? Not defined by what is going on inside my body, but defined by whether society is working with my body or working against it?

I’m going to let you in on a secret. A lot of us people who do fit the classic dictionary definition of “disabled” — don’t feel “disabled” either. We don’t always feel un-able. We feel like “just people.” Normal people living a normal life, just happen to have some sort of neurological or physiological difference, but that isn’t our defining characteristic or something that is always forefront in our minds, it’s just one part of us that doesn’t always make that big a difference in our life at all.

Remember, briefly, the social and medical models of disability.

Under the medical model, a person must justify their claim to disability. A person must fit neatly into a narrow diagnosis with a Latin-based name. The person must be cleanly categorized. Their experiences must fit a prepared check list.

The medical model says that your body fails to be normal in this particular way: so we must devise a way to force it to be normal, and that will solve the problem.

Naturally, such an approach to disability will wind up excluding a good many people who don’t fit those boxes cleanly, who appear close to normal — and that just can’t be right; there must be a logical explanation, like that they are over-worrying, imagining things, that they like being sick and want the world to treat them with kid gloves. After all, there is no proof that they deviate from the normal — so they have failed to justify themselves as different.

The medical model, in this way, denies community and services to people who still face considerable obstacles to full participation in society because they have failed to prove that they deserve that “special treatment.” They have failed to prove themselves as disabled enough. They aren’t “other” enough to be Othered.

The medical model imposes strict and narrow definitions — which become boundaries which must be policed.

What do you do when you’re caught in the middle? Different, but not different enough to be Othered, but still needing services (benefits, accommodations) which are only given to Others.

Informed by the social model, “disability” becomes a marker not for condition (mental or physical) — not for “what I feel inside, what I experience inside” — but instead for the fact that our condition is maligned or neglected (or both) by the rest of society.

Disability is not a matter of my condition, but a matter of the group I am assigned because of that condition.

Perhaps it could be said as such: Disability is not a condition, it is a status.

The classic analogy to explain the social model is this:

Many sighted people have less-than-perfect sight. If assistive devices — glasses or contact lenses — were not so widely available and accessible, many of these people would be prevented from full participation in many aspects of society.

But because society sees fit to prioritize this assistance, to make sure glasses/contacts are widely available and accessible so that every less-than-perfect sighted person can have clearer vision — because society decided that no person should be blocked from access because of hir different vision — this condition is no longer a disability.

This is a useful thought experiment. But it is not a perfect analogy. Many blind people still face considerable access blocks. This only really applies to people who are sighted, but whose sight is not precisely “normal.” Perhaps because society can, for the most part, bring abnormally-sighted people to normal-sightedness, whereas it cannot do the same to blind folk.

There’s a lot to explore here.

The word disability isn’t perfect. I don’t know that I would choose it, were we to start over with a blank slate. Nor do I know that most people who are active in the disability community would choose it.

What I do know is this: people who don’t feel, literal-dictionary-definition disabled, embrace the word and run with it. They can make it something all their own.

Queer is a less-than-perfect word when you consider its literal definition, too. Yet the queer community has decided that they’re gonna take this thing and make it into what they want it to be. And they’re making something pretty damn awesome.

I don’t feel dis-abled. I feel people-are-willfully-ignorant and access-to-good-care-is-restricted-in-unnecessary-ways and the-medical-industry-has-no-respect-for-me. Among other things.

And I’m sure other disabled folk feel why-isn’t-there-a-wheelchair-ramp-for-this-public-use-building and nobody-has-to-accommodate-my-needs-until-they-get-sued-why-don’t-we-have-an-oversight-board-that-makes-them-do-it-right-from-the-fucking-start and you-aren’t-providing-alternatives-so-I-can-access-your-lecture-even-though-I-can’t-[hear-what-you-speak/see-what-you-write/be-there-in-person-at-all]. Among other things.

People who identify as disabled (or are identified as such by society) don’t necessarily always think the dictionary definition of the word applies to them. There are disabled people in wheelchairs or braces who still work, still have families, still go to parties. There are disabled people who appear totally abled yet can’t work, can’t perform certain self-care, and so on.

The word “disability,” in the disability movement right now, already refers to a great variety of individual conditions, abilities, approaches…

And for the most part, when a person appears whose condition challenges the current boundaries of abled/disabled, the disability community is completely ready to revise their assumptions and welcome that person (and hir companions) into the movement.

Because, here’s the thing…

The disability movement has a lot to offer to a lot of different people — not all of those people who may identify as disabled.

And this is part of why I do not want to pressure people to change their identification. They don’t have to identify as a disabled person, or a person with a disability, to still become a part of the disability movement, to benefit from it, to help move it forward.

What I am wanting to do is not change people’s minds about how they individually self-identify. What I want to do is explore the cultural phenomenon that is certain groups rejecting the label of disability.

Anyway: the disability movement is working hard to change the way we approach the world. From an approach that excludes non-normal people to an approach that stops INcluding by certain standards and starts just treating all persons as fundamentally human, period.

Under the current system, when a woman becomes pregnant and plans to keep the child, we expect the child to be free of disability. What’s that refrain from the supposedly-gender-enlightened? “I don’t care whether it’s a girl or a boy, as long as the baby comes out healthy!”

When we encounter a person, we expect that person to be abled. When we imagine a “person” — just a generic, default person — we imagine that person as able-normative.

Currently, things go like this: 1. World expects “normal.” 2. Non-normal people come along. 3. Oops!

What disabled people want is more like this: 1. World is prepared for any number of different things. 2. We come along. 3. Hey, we were expecting you!

This approach is what defines the disability movement. We want to change the world so that the world stops treating us as unexpected — and therefore a disappointment — and therefore has not prepared for us — and therefore we have to constantly fight with the world to make it change every little individual thing it has set up wrong.

This approach, applied broadly, has benefits for so many more people than only the classically, dictionary-definition disabled.

This is the world I want to live in (bold emphasis added)…

My body isn’t the enemy, I realized.

It’s not my physical self that creates all my problems.

It’s all the external expectations of it.

Disability isn’t the result of individual defects, deviations from the able-bodied norm. Disability is the result of a society that fails to accommodate these differences.

What if we saw these differences as variation, not deviation? After all, we fully expect our children to be born with any number of different eye colors. Why is it any less when it comes to physical and mental abilities?

Can you shape a world in your mind where there is no norm? What does it look like? How does it differ from the world you live in today? What do you expect of people as a whole in order to support those currently disadvantaged?

The more I think, the more confused I become. It seems impossible to structure society so that everyone is brought to a similar level of ability across the board. But it does seem possible to structure society so that those fully-abled work to make up for those straightforwardly lacking, and everyone works with each other in full expectation of a wide range of ability across the populace, and all of this is seen not as hassling and burdensome, noble and heroic when someone takes it on—but as mundane, everyday, simply expected, no different from separating out your recyclables or driving on the right side of the road: something that everybody does, because it isn’t that hard to do, and it benefits yourself as well as those around you, so it’s stupid and even outright reprehensible not to.

That is the world I want to live in.

[Reading back, I cringe at the use of the words “straightforwardly lacking.” Proof that we are all still learning, still building.]

What if things did happen that way? What if we just rushed to give, knowing that those around us would rush to give back?

and in this POV, the centering of individualism falls apart — because that’s not what life is about. life is give and take, push and pull, you do this for me (that i don’t do well/don’t like to do, but that i want/need) and i’ll do this for you (that i do well/like to do, and you want/need).

disability, really, when you get down to it, is the ultimate unraveling of that ball of individualism — it FORCES you to look at all these little things that go into the living of a life, and realize that not all of them are yours to do or yours to control — and also to realize how many of those little things YOU affect for OTHER people’s lives — and to finally give up, and fall back into the arms of the community.

it means you have to stop looking at things as “mine, yours, this person’s, that person’s” etc. you have to stop keeping the damn tally — and just rush to give, knowing that those around you will rush to give back…

so many people are afraid to admit that ultimately, they DO depend on the people around them, and their accomplishments are not solely their own, and the things they do, affect people besides themselves. but it’s all true! and it’s not a bad thing, if you look at it the right way.

This is everything we are trying to change.

And when we are successful: it will be good for so many people. It will benefit a great many, people who might not consider themselves part of this movement, but who will see their life become substantially easier or better, because this movement has destroyed the system that puts obstacles in their path.

There is a lot people can learn from the disability movement — even if they don’t consider themselves a part of it.

This is why I, and others, explicitly tie our disability activism to our feminism. Believe it or not, there are things that non-disabled feminists can learn from disabled ones about how to refine, how to better our (not their, OUR) feminist movement.

There are things the disability movement is accomplishing that the feminist movement has fallen short on. Things that disability activists are paying attention to that feminists have forgotten.

And it makes a difference in women’s lives.

There are substantial immediate benefits to individuals, as well. Many of you who do not feel “disabled” nonetheless benefit directly from the Americans with Disabilities act and other non-discrimination legislation. And that’s only in the realm of the state (legal sense).

Consider the pharmaceutical industry. The alternative medicine industry. Consider protections on health insurance that prevent companies from discriminating against people with pre-existing conditions or prevent them from denying certain treatments.

These are all things the disability movement has had part in. Often, the disability movement has been the sole force pushing for these things — when other movements fall short, and forget us.

And there is, therefore, substantial benefit to involving oneself in the disability movement. Because it is working for you. So it will do good for you and for us if you directly engage with it — help it refine its purpose — help direct its actions — help challenge preconceptions.

If you will stand with us, if you will be — a friend, or a family member — whatever role you feel comfortable taking, we will stand, sit, lean or lie beside you. We will be there with you, however you identify.

We want more people to engage with us — on an honest, good-faith level.

Some of those people will find themselves beginning to identify as a part of this movement, as a person with a disability. Some people will not, but will remain our friend, our ally.

No matter which: we are happy to have you.

***

ETA: I really should have included a link to this post from Joel at NTs Are Weird — from the perspective of the autistic community. I ain’t the only one beating this drum! I remember reading this post a long while back, and it has informed my politics a great deal. And I think it is necessary reading for anyone engaging with the disability movement. And he does a great job wrapping up the many elements of this post! 😉 Take it away (bold emphasis mine):

Welcome to the disability community! […]

Yes, that’s right, you’re DISABLED. Yep, you can pick that word apart and tell me why you aren’t, but, trust me, you are. And, no, I don’t mean that you are less or more functional than anyone else. I mean that you are part of a community defined by society’s institutions and programs, a community formed because of our minority status and the fact that society expects certain strengths and weaknesses, and anyone who doesn’t have that same pattern of strengths and weaknesses is going to have trouble in this society.

Yep, that’s the social model. It’s not the “OH MY GOD, I AM SO BROKEN AND LIFE SUCKS AND I WANT TO BE NORMAL BECAUSE EVERYTHING WOULD BE WONDERFUL AND I WOULD HAVE LOTS OF MONEY AND A GIRLFRIEND AND A NICE CAR” view of disability. But it is recognition that we have trouble in society as it is currently set up. You’ll also notice that it is not a view that accepts society as a static, unchangeable, and morally good entity, but rather as an institution that can and should change – even when people have a hard time seeing how it could.

In addition to this, I want you to know that there is “nothing new under the sun.” You don’t need to reinvent disability theory […]

One example – although the victory isn’t yet fully realized – find out why there public transit has to at least make *some* effort at accommodation in the US. Yep, I know it still sucks, and there are tons of problems – I’m not saying anything different. But I can assure you of this: Without good advocacy, there wouldn’t be a wheelchair lift on any bus except one owned by a nursing home – and even that one might not have one.

Find out why people with cerebral palsy can go to US schools today, even if their natural speech is hard to understand, thanks to assistive technology and good law. Sure, schools, technology, and law aren’t good enough yet, but they are way better than they were 40 years ago. Why?

Better yet, learn how you can make a bus in your city more accessible both to yourself and to someone with a different kind of disability. Learn about your schools and what can be done to help others with disability. Not just autistic people, but people with all types of disabilities. Do you know what you will find if you do this? You’ll find out quickly that it also helps you, even if that wasn’t the goal of the movement.

For those of you who are already doing these things – thanks! It’s good for us to stop reinventing the wheel once in a while.

Congratulations, Chally!

24 October, 2009Uncategorizedamandaw

Our dear Chally, of Zero at the Bone, is now also an official contributor at Feministe!

Everyone be sure to send her well-wishes!

A bit of disability humour to brighten your day

24 October, 2009happy postsdisability, funny, videoChally

When you hear ‘disability’ and ‘joke’ in the same sentence, it’s usually not a good sign. But that’s not always the case.

I thought we could all do with a bit of a laugh and that some of you might enjoy this video. It’s a routine from the very popular Australian comedian and television presenter Adam Hills, who has an artificial leg. Hills doesn’t refer to himself as disabled, but he’s known for talking about disability issues and often having a sign language interpreter at his shows.

Transcript:
I went out with this girl once, we’d been together for a little while, and we got back to her place for the first ever time, and it was that moment of kind of sitting, you know, on the edge of a bed, and she went, ‘ooh, do you want to stay the night,’ and I went, ‘oh, yeah all right.’ She went, ‘Oh, okay, I’ll be back in a second.’ And she walked out of the room. And I sat there going, ‘awww – oh, shit. I haven’t told her. Well now what do I do?’ You know what I mean? Well I can’t wait for her to walk back in and just go, ‘look! [pretending to hold up his prosthetic] It fell off.’ I considered doing a magic trick with a blanket [pretending to flourish a blanket and reveal not having a second leg]. I sat there for ten minutes thinking a) where has she gone for ten minutes? And b) How am I gonna bring this up in conversation? What can she say to which I could naturally respond, ‘really? Well I’ve got one leg!’ [gestures in that direction] I’m not making this up, she came back in the room and went, ‘I’m really sorry, I’ve only got one pillow.’ [pauses for laughter, then repeats gesture] Ta da! She went, ‘ah, that explains it!’ ‘It explains what?’ She said, ‘I spent half an hour at dinner rubbing your foot under the table and you didn’t notice.’

[Cross-posted at Zero at the Bone.]

Chatterday! Open Thread

24 October, 2009chatterdaylauredhel

This is our weekly Chatterday! open thread. Use this open thread to talk amongst yourselves: feel free to share a link, have a vent, or spread some joy. About the only content-related rule is to keep this thread for things not covered in other threads over the past few weeks.

What have you been reading or watching lately (remembering spoiler warnings)? What are you proud of this week? What’s made your teeth itch? What’s going on in your part of the world?

Today’s chatterday backcloth, a premature baby deer, comes via The Daily Squee.

babydeer

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.

A Delayed Deployment of Care

23 October, 2009accessibility, medical practice, militarydrugs are bad mmm'kay, medical care, military, TRICAREOuyang Dan

Moderatix note: This post will be United States Military centric, as that is the perspective I offer, and the broken system within which I currently exist and attempt to navigate. Other voices are welcome and experiences appreciated within the context of the conversation, since I can not pretend to know every thing about every military experience from every branch in every country.

One of the most frustrating aspects of dealing with a chronic pain condition while under military care, as an active duty service member or a dependent is an inconsistency of care. Something that I learned pretty early on is that my best bet for getting the best care is to have a regular doctor.

May I drop into a sports metaphor?

Your regular doc, or in my case, my PCM, should be the quarterback of your health care team. Sie should be the one on the field, aware of all the other team’s members (your symptoms, labs, tests, etc.), the plays your team have available (medications, treatments, therapies you are trying/have tried), the other team members (other docs and lab techs), as well as the special teams coaches available (specialists). The quarterback should be able to run the plays and call audibles as needed, because the quarterback presumably knows the team, is comfortable with the team and the plays, and has been doing this a while.

But if you are playing on a military team your quarterback gets traded. A lot. Often without you even knowing, in the dark of the night like Jon Gruden to the Buccaneers.

It isn’t unusual to call central appointments (because no matter how many times you have seen your PCM you can not just call hir up and schedule your own damned appointment directly, even if sie told you to) and ask for an appointment with CDR (Commander) Happygunns only to find out that sie has been sent out w/ the Reagan to whatever mission it is currently floating. To call this a hiccup in care is the understatement of the year. It can pretty much end the season before the playoffs.

This is a huge chunk of what amandaw calls the Second Shift for the Sick if you are trying to navigate your health care through the military. Now, you have to find the time to get over to the TRICARE office to request a new PCM (which usually has to happen in person). That takes time and spoons, and may involve some accessibility issues. If you have a chronic condition you have to make sure that you get a medical officer (who, to my understanding, is O-5, equivalent, or above) to make sure sie is qualified to handle chronic conditions, instead of a Chief or other upper enlisted Corpsman or an lower ranking officer, which is a majority of PCMs at most MTFs. Now, you have to call to set up a meet and greet with this new PCM, and that is going to take time because CAPT Nukeboom already has existing patients, or is new and has to fit you into the schedule. If the appointment you were trying to make with CDR Happygunns was for a prescription refill (like, oh, something super easy to get like Vicodin or another pain medication), this means that during all of this time your quality of life is being compromised. That prescription might mean spoons, which translates into showers or laundry or hugging family members or just being able to sit upright. Maybe it was an appointment for much needed lab results (wait for it…).

CAPT Nukeboom isn’t going to just jump in and hit the ground running. If we go back to the metaphor, sie is going to need time to get acquainted with the team. Sie might even throw out the playbook and start over from scratch. Odds dictate that CAPT Nukeboom wasn’t just going to write that Vicodin script or whatever you came for (yeah, I was kind of done w/ football too…let’s see if I can’t get a good hockey metaphor next time) anyway, you drug seeker, without really really making sure you really really need it.

Those lab result you were waiting for? If you hadn’t gotten the results from the doctor that ordered them, and that doctor happened to be CDR Happygunns then you are going to have to go get new tests (WHEEEEE!). Only the referring doctor can get the original results, but that’s OK, because CAPT Nukeboom wanted new labs and tests done anyway, and you haven’t been poked with something sharp in at least three months…

There is also a good chance that CAPT Nukeboom might disagree with whatever course of treatment CDR Happygunns was recommending at the time, regardless of how well it was working. More spoons will be spent trying to reason with said new doctor who may or may not be receptive to your input. If you are dealing with a best case scenario they are, and things speed along nicely, and you are only set back about three weeks in your care (only!). Hopefully you can hold on without your Lyrica or your pain medication or your anti-seizure meds or your anti-depressants or whatever else you are waiting on, because you are not going to get anything until CAPT Nukeboom is satisfied that sie has fully come to understand your file. If you are dealing with a less than best case scenario, you are going to fine yourself back in the TRICARE office begging them to let you request another new PCM. Second verse, same as the first.

There are obvious reasons why these things happen (um, Hi, Mr. President, thanks!), but there is absolutely no reason why it needs to continue this way for people living with chronic conditions. Modern technology means that our medical records are kept electronically as well as in hard copy back ups for all the doctors to access. Lab work and test results are available freely to any doctor with access as your health care provider. Notes and thoughts and memos from the countless doctors and providers…oh and all the specialists are all still there…a phone call or an email away.

A bump in your care can be enough to set you back months, and maybe even undo any progress you have made at all. For some people I know (myself included) it can be enough to make you try to just “tough it out” and draw inward, afraid to seek medical care.

While the military medical system has many wonderful facets, including the fact that it is “free” *ahem* there are some huge flies in the ointment that need to be addressed. With the high volume and tempo of deployments going on and the demand of medical personnel in the field so high, it might do well to actually use the military’s love of contracting civilians a little more in areas where it could be more useful.

I’m just sayin’.

This is Hard

23 October, 2009activism, identity, media and pop culture, mental health, Uncategorizedabby jean

I sat down this evening to find some stuff I could write a few posts about. I went to google news and did a search for “mental illness” and one for “bipolar disorder” and looked through everything that had come up in the past week.

There was a fair amount of stuff – some workers in the CA Department of Mental health are working enough overtime to double their salaries, continuing involvement in your field of work after retiring may help mental health, some news updates on the British guy scheduled for execution in China – so I just picked out a couple of stories to look at. I was specifically looking for something that would be positive or at least neutral – something that wasn’t about people with mental disabilities being violent criminals, or about how pharmaceutical companies are making money.

So I picked an article that seemed positive: a piece by Glenn Close in the Huffington Post about ending stigma. It’s titled Mental Illness: the Stigma of Silence, and there’s a lot in it that’s great. She criticizes the movie Fatal Attraction (in which she starred) for portraying her character as a dangerous psychopath and misrepresenting the reality of mental illness. She points out how other “topics that were once unspeakable,” like breast cancer and AIDS, have gained wide acceptance and awareness, while there is largely silence on the issue of mental illness. She is frustrated by the societal assumption that people with mental disabilities are lost causes. She even calls out ableist language like “‘crazy,’ ‘nuts,’ or ‘psycho’.”

But. She opens the piece by saying that “mental illness and [she] are no strangers” – and then cites her “challenge — and the privilege — of playing characters who have deep psychological wounds” as the basis of her authority. She also mentions that her “sister suffers from a bipolar disorder and [her] nephew from schizoaffective disorder” (emphasis mine). Which … isn’t great and made me frown a bit. But I could have overlooked that – it’s an article with a lot of visibility that makes strong arguments against stigma, it’s connected to an organization “that strives to inspire people to start talking openly about mental illness, to break through the silence and fear [and has] the support of every major, American mental health organization and numerous others.”

Except then I clicked through to the website of the organization, Bring Change 2 Mind. And here is the first thing I saw: (screencap of a video, so excuse the graphics)

Bring Change 2 Mind

I literally gasped out loud. She is a mom, his mom. And he is not even her son, not even a person, not even a person with schizophrenia, not even a schizophrenic, he is labeled with his diagnosis. There’s other photos on the front page- someone with a “post traumatic stress disorder” shirt, and Glenn Close (wearing a “sister” shirt) sitting next to her sister, who is wearing a “bipolar shirt.” And I closed the window. Any kind of anti-stigma campaign that would involve me wearing a shirt saying “bipolar” on it is not a campaign I want to be a part of. More power to those who did choose to be involved, but it just feels wrong and isolating to me. Like that is the only relevant characteristic of the person with mental illness, while people without mental illness are defined in terms of families, relationships to other people.

And that’s why this (and by ‘this’ I mean being a person with a mental disability) is so hard – even those allies who genuinely want to end stigma and address ableism can do things that feel like a slap in the face. We are embedded in a culture so steeped in ableism with institutions providing a long term structure for discrimination and dismissal that it shows up everywhere you look – even when you’re intentionally looking for something good and supportive. So some days it seems easier not to pay attention to mental health issues at all, because around any corner could be something like this.

FWD/Forward

FWD (feminists with disabilities) for a way forward