All posts by amandaw

Inertia

Asking for help is something I have never been good at. It’s rather like standing in front of a car hurdling toward you, intending to push it in the opposite direction. It requires an enormous amount of resistance. And I’m almost certain to come away with some sort of injury.

Lying in bed the other night, I had a realization. I seem to have two modes of being: at rest, sitting or leaning or lying in one place, unmoving, still; or in motion, pushing, moving, rushing, doing, working, over-working. And it is very, very difficult for me to move from one state to another. It is not as easy as just get up and go or sit down and stop. It would be expected, with my disabilities, that I would have trouble getting up from a state of rest to start doing, but wouldn’t you think it would be easy to just stop myself from doing and rest?

But it’s not. I find it very, very difficult to stop moving, working, doing when I am already doing it. Very difficult. In fact, I actually have to work at stopping working. It’s like once the do switch is on in my brain, turning it off is about as easy as pushing that hurdling car. I get to a point where I don’t even notice that I am doing; my consciousness turns off and I am pushing forward on autopilot, working from habit, memorized routines, just going and going — and my awareness has been switched off, perhaps as a way to avoid feeling the pain?, but that means I don’t know when it’s time to stop. I don’t know when I’ve reached the critical point, when I’ve done too much, when I cannot do any more — often, I don’t know until my body just stops doing and I am confused inside it, trying to make it move and being denied, and it takes time for my consciousness to boot back up, to kick on and make me realize oh — I need to stop.

It has come to a point where I’ve learned that I need to stop before it feels like I need to stop, because my body and brain simply do not have the ability to sound the alarm for me. Even when my body can’t keep going anymore, no matter how much I push it, it still doesn’t feel like I can’t keep going anymore.

So I’ve been teaching myself, over the years, to force an override at a certain point — not based on what I’m feeling at the moment, but based on predetermined amounts of time/work that I believe is what I can handle on the balance. It’s hard, because I’m so stuck in that inertia of doing that I often don’t even remember to keep track of the amount of time/work that has passed, so I might forget for some time after I’ve reached that point, and then try to abort belatedly.

Either way, even when I’m “being good” and recognizing when that predetermined point has come, the act of overriding my natural inertia — my natural tendency to keep moving — is not as easy as flipping a switch. I actually have to go through a process of convincing myself that yes, it is time to stop, and yes, I really should stop, no, I should not keep going, and yes, it is okay to stop, really, it’s okay, and yes, I need it — and so on (and on, and on, and on). And then even if I am convinced, I have to try to push in the opposite direction of my body pushing to go and do. And pushing your body to stop pushing is about as technically-impossible as it sounds.

Now, convincing myself just that I should stop doing is a difficult enough thing to do. But add in a sense of pride… and a sense of guilt… and suddenly convincing myself that I should do (or stop doing) something doesn’t seem like such a hard thing in comparison.

***

I am one of two clerks working on our program at my office. Last week, for three days, my partner clerk was not there — it was just me running the show. And I happen to think that I am knowledgeable and capable enough to do a pretty good job of it. The problem is that we are severely short-staffed — the two of us in our corner of the building are already balancing a workload that should require four or five clerks. So when one of the two is gone, well, things move from chaos to crisis, so to speak.

I have an amazing supervisor. I absolutely adore her. And she was keeping an eye out for me. She kept coming back and asking if there was anything she could help with.

And for that first day, I kept saying no. And I thought it was legitimate! One of the main assignments is something she is not supposed to do at all, and another couple are things that I just thought would be more complicated to have someone else do than to do myself. So I said no.

And then my husband poked a little bit of fun at me — he works at the same office — saying that my supervisor had been talking with him (casually) and mentioned that she kept trying to offer help, and I kept refusing. And they shared a laugh, and he said yeah, that sounds like her. She’s not very good about asking for help when she needs it.

And I needed it. I just couldn’t convince myself inside that I needed it, that it would help, that it would be OK to ask, and so forth. I was already so overwhelmed and using so much energy, and I watched that car hurtling toward me and knew I did not have the strength required to push it the other way. Not on top of everything else I was doing. I did not have the capacity to make myself ask.

Because I’m not supposed to ask for help. That means admitting I can’t do my job. It means admitting my disability does make me less capable than other people. It means admitting my disability does exist and does affect me. And I’m not supposed to ask for help, because other people can’t spend their time and energy doing something for my sake. It’s not fair to them. I don’t deserve that, to have anyone other than me devote a single second to me. Other people would deserve that, but I am not deserving. If I ask for help, I am telling that person “I am worthless. Useless. I can’t do anything right.”

Asking for help means sending the message to the people around me that I am actually not as good a worker (as good a person) as I keep insisting to them that I am. That actually, I am inept and incapable. That I can’t do anything right, that I do mess things up.

Asking for help is asking for special treatment. Asking for help is asking other people to pretend like I deserve the same consideration as everyone else, and deserve to be considered just as capable as everyone else, while also demanding that they treat me differently, do special things for me that no one else gets to have done. Everyone else has to stand on their own, and here I am demanding that all these people prop me up and say that it’s just the same as that person over there standing on their own.

Every single time I need help, I have to fight these thoughts. Even if I don’t actually think them consciously. Every single time I need help I have to take time and energy to refute all of these thoughts to myself. I have to take time and energy to prove all those thoughts wrong. And that takes quite a lot of energy.

So I don’t ask. Even when I need it. Even when I know I need it. And even when I know, intellectually, consciously, that it is OK to ask for help, and that I should ask for help. I still don’t ask.

Because by the time I’m needing help, I’m already at my limits. I certainly don’t have any energy left to deal with that hurtling car.

(Cross-posted at three rivers fog.)

http://amandaw.tumblr.com/post/273729603/snow-is-predicted-for-the-valley-floor-here-in

A brief PSA on language

So many people have complained that it is asking too much of abled people to stop using words they consider trivial: crazy, insane, lunatic, idiot, moron, dumb, blind, etc.

I beg to differ.

You know what is really damn easy? Erasing these words from your vocabulary. All you have to do is stop saying them.

You know what is really hard?

Confronting people on their use of same language.

We aren’t even asking you to do the hard work. We aren’t asking you to tell other people to stop using that language. We aren’t asking you to confront other people on their use of that language. We aren’t asking you to explain why it is problematic, to answer people’s questions, to deal with their redirection tactics, or to handle the attacks on and harassment of the people negatively affected by that language that such confrontations always seem to draw.

You don’t have to take the brunt of it. You don’t have to deal with the negative consequences. You don’t have to face employment discrimination, street harassment, caretaker abuse, and other people’s general cluelessness about our lives. You get to sit tight in your privilege, enjoying it without even realizing you’re doing it.

All you have to do is cut a few words out of your speaking and/or writing vocabulary. That’s it.

We’re the ones who are putting our safety on the line trying to change the cultural system that oppresses us.

Two seconds to reconsidering what you’re really trying to say? Easy.

Changing other people’s deep-seated attitudes? Really damn hard.

How do you think we feel when you complain that two seconds is just tooooo haaaaard for you to take on?

(Cross-posted at three rivers fog.)

Disability Is …?

(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.”

1.

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?

2.

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.

3.

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.

4.

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.

5.

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.

6.

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…

7.

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.

8.

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.

9.

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.

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.

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.

You don’t have to be normal.

(Originally posted April 2008 in two parts at three rivers fog.)

this is new to me. this idea that i should love my body. not hate it.

it’s funny, because i was about to say “this isn’t a post about body image.” but it is, isn’t it?

let’s cut to the point. i’m not talking about beauty standards.

i’m talking about my body. this physical thing.

i need to stop hating that physical thing.

it works differently. it doesn’t work like your body.

but that doesn’t make it bad.

this is hard to grasp. i don’t like this idea.

but maybe it’s better that i respect my body, and how it functions, than malign it, and Other it, and see myself as working against it.

maybe i need to see my body as that physical thing that is trying to help me be everything i want to be.

maybe i need to understand that i just have to interact differently with my body to accomplish that.

and that is not bad. that doesn’t make me Less Than. that doesn’t even make me different — or it shouldn’t, anyway.

maybe the problem is that i have been so indoctrinated into this culture that i can’t even see myself as just being – it’s always how different i am from the “normal” “healthy” body.

you know what, dammit, my body is “healthy.” my body is damn well fucking “normal” for me. when i understand how to work with it? i live a pretty damn nice life.

but the culture i live in doesn’t allow for that view. the culture i live in says that my body is not only different, but different in a bad way, because it doesn’t let me live my life like a normal person does.

fuck that.

i have a lot to work on, here.

revelation: i wouldn’t have such a hard fucking time learning how to work with my body if my culture hadn’t taught me to expect to be The Norm. if my culture hadn’t taught me that if you look like you’re fully-abled, then you must be. if my culture hadn’t taught me that if it doesn’t show up in the bloodwork or the ultrasound then it doesn’t exist. if my culture hadn’t taught me that my pain is simply pathology. if my culture hadn’t taught me about welfare queens and “milking the system.” if my culture hadn’t taught me that disability is both scary and pathetic.

…maybe i just need to understand that this is how my body works and damn it all, there shouldn’t be anything wrong with that — the fact that there is anything “wrong” is a sign of a fucked up culture — not of a fucked up body.

***

…the person who believes ‘I will be real when I am normal’ will always be almost a person, but will never make it all the way.

Eugene Marcos (via, via)

We have been told all our lives that to be accepted, to be successful, to be a whole person, we have to be “normal.”

And so we strive to change ourselves such that we resemble normalcy.

But it is a rare bird that can adapt itself to living in the water — or fish that can adapt itself to fly.1

Respect your body and your mind. They operate how they operate, and there is no need to change that, not for anyone’s sake. It is not a deficiency. It does not make you lesser. It is not deviancy. It is what you are, and it is good for you.

People on the outside will be uncomfortable with the implications of such a weird and different body (mind) being a good thing, because we have all been indoctrinated into the cult of dominance, where what dominates is Good and Right, and anything that is not the same is Bad and Wrong. It manifests itself in so many different ways even for the same differences. But that is the root of it.

To outsiders, the idea that what you are is definitionally good, because it is good for you, a different person, is disturbing. To outsiders, it says that then, what they are must be bad. And those who think that way will therefore reject you as a person, differences and all.

But there is a different way. There is a way built, fundamentally, on respect. On allowing one another to be what we are, and finding joy in what results. On knowing that when a person falters trying to live in this society, it should not be chalked up to the fact that they are different, but to the fact that society has failed to plan for anything but the dominant, and will then fail in trying to accommodate anything else.

It rests on, again, seeing a person and thinking not: burden, but: potential.

On seeing that person, and recognizing them as a person.

We should all be prepared to accommodate differences, even when it means a change or an extra effort. We should be prepared for this, because we expect as much already from those we are failing to accommodate. We already expect them to change their very being to be able to accommodate how we operate. So we should not protest when we are called upon to open our minds, to change how we think, to change what we do. After all, at least we are not being asked to change what we are.

  1. I hesitated with this metaphor. I was afraid of the implications. The usual stuff, that pwd are of an entirely different species, that pwd are animals, that pwd are at base un-understandable and therefore nobody should even try. (”We are nearer still when we know we don’t have to understand somebody to know he is real.”) But at the same time, I don’t want to shy away from the implication that we are not all the same. That is what we are pushing to accept. Everyone approaches the world in hir own way, and that is ok, and we don’t all have to come from the same place to be able to travel together.

Conceptualizing disability

Amanda flags a great post by Anne C at Existence is Wonderful, which catalogues “three different ways of looking at autism — in terms of neurological structure, in terms of lived experience, and in terms of outward behavior.”  And Anne does such wonderful things with this delineation. Click through to read the whole post, which addresses attitudes toward autism in particular, but I think Anne hit on something that can be safely generalized outward — her three approaches toward autism can also, in fact, be three approaches toward disability.

[aut_concept_chart.png]AnneC’s chart: Conceptualizing Autism, transcribed below1

Some highlights, all emphasis mine.

My guess is that there are probably multiple underlying structural variations that can produce “autistic phenotypes”, and it will be interesting to see how this pans out, but at any rate, one important aspect of how I presently conceptualize autism is the fact that some structural differences do seem to really exist. And if the difference does indeed go “all the way down” to the brain, as it appears to, then it makes very little sense to (as some seem to) view autism as some kind of disruptive “module” overlaid upon a typical brain.

This is significant both in the cognitive science and the ethics realm, as it indicates (a) that experiments presuming autistic brains to be “broken versions of normal brains” are likely useless, and (b) that the best ways to help autistic people learn and develop functional skills are those which acknowledge an underlying and pervasive difference as opposed to those which presume that autism can be “removed” or “trained out” by simply eliminating surface behaviors.

Yes! Autism, or any disability, is not a case of “a normal brain gone wrong.” It is not a defect or even a modification of a “normal” brain. It is, simply put, variation. We will never overcome society’s confusion and mistreatment toward pwd as long as we think there is any such thing as a “normal” brain (or body) at all. Is any one color or pattern of a cat’s coat a “normal” one? Or are there many varieties, none inherently better or more-important than the others?

At heart of society’s approach toward disability is the assumption that there is a standard template for the human body, and if any one body turns out to be different, it is a deviation from that standard. As such, the solution to any problems resulting from said differences is to attempt to make up for that “deviation,” to attempt to make the “defective” body more like the standard template in whatever way possible.

Put this way, it is obvious that this approach is misguided at best. The solution is not to change the individual body to fit the narrow, faulty expectations, but to adjust those expectations to include the range and diversity of the human experience.

Similarly:

Mind you, none of this is meant to imply that I (or the researchers engaging in the experiments demonstrating visual-spatial trends in autistic persons) believe that autistic people cannot be disabled. Certainly, “uneven” development (which may include significant delays alongside “advanced” skill acquisition in some individuals), communication difficulties, and consequent social, educational, and occupational issues are very real. However, the existence of real disabilities and difficulties need not imply that the “whole person” is somehow diminished by the fact of being autistic, or that one cannot have attributes which exist as both strength and weakness depending upon the context.

This is where Anne comes back around to detail the third approach (outwardly knowable traits). She observes:

The orange column on the right of the diagram summarizes what most people probably think of as “autism” — that is, the externally-visible things that generally get people suspected of being, or identified as being, autistic in the first place.

This is where we see such things as diagnostic checklists, observations about a person’s developmental milestones (and when/if they meet certain expected ones), outward actions, language use, body language, tone of voice, social/educational/occupational success (or lack thereof) in the absence of modifying factors, etc.

What is interesting, and perhaps a bit unnerving, is that this category is at once the one people tend to put the most stock in (in terms of identifying autistics, in terms of determining what educational supports we might need, etc.) and the one most subject to cultural biases, personal biases, misinformation, and the ever-changing social lens through which different kinds of people are generally viewed.

…which, honestly, is a bit scary and unsettling for those of us who are going to be the ones to bear the consequences of any such things.

  1. The chart reads in three columns, transcribed here:

    * Not Outwardly Visible (Indicated by comparison studies of tissues from autistic and non-autistic brains, and some imaging studies)
    * Neurology (Brain Structure/Wiring): Autistic and non-autistic brains are different at the physical level!
    * Some studies suggest: Differences in “minicolumn” cell concentration and size; Local/global processing differences; White/gray matter ratio differences … but there is still no conclusive “autism brain scan.”

    * Not Outwardly Visible (Can be extrapolated from tendencies in performing certain cognitive tasks, and from autistic self-reports and introspection)
    * Cognitive & Perceptual Style: What characterizes the experience of being Autistic
    * Tendency to notice and attend to different stimuli than non-autistic people; Language processing differences (learns and uses language atypically); Sensory processing differences; Different memory and problem-solving strategies

    * Outwardly Visible (Patterns & tendencies in a person’s actions, demeanor, etc.)
    * Observable Traits/Behavior: What usually gets a person identified/diagnosed as Autistic
    * Atypical/”uneven” development (skills acquired in nonstandard order and manner); Diagnostic criteria (i.e. DSM); Behavioral tendencies indicate underlying differences, but do not comprise those differences!

Why can’t disorder be beautiful?

The mess in my apartment never goes away. We get this room clean, and that room clean, and the other, but rarely all at the same time. Even when we push to get everything in order, there is always something neglected — usually my mess in the second bedroom where I keep all my art supplies, strewn about, which I always promise to myself to organize but never get around to doing.

I’ll organize this, and organize that, and it will help me keep my life together for a time — organizing my closet or my deskspace or the living room — but as soon as a stressful time comes, and they come with regularity, the organization goes out the window — I throw my clothes on the floor and never pick them up, food kept on my desk with nail polish and sewing thread and sticky notes — it’s always the concept of, do what is necessary now and put everything in place later, when you’ve returned to “normal” energy state and can handle it.

But life seems to move at a faster pace than my body can keep up with. Maybe could keep up if I had a normal amount of energy, then I’d have the space and drive to get that make-up work done regularly, if I still weren’t able to just maintain everything as I went along (that being the idealized perfect state to which we aspire, right?). Maybe if I had the energy that I have when I’m at my best — but all the time — things would be great. And when I’m at my best energy level, I feel like I could continue things like that, if only I did this and changed that and kept things this way. And I try those things as they come to me, I am constantly reorganizing my entire life, never stop fine-tuning, trying to make things more efficient. But it’s never enough, I just don’t have enough in me to keep up with it all.

So maybe we get the junk off the floor and vacuum and swiffer everything, and tidy up around the edges of things, but there’s still that mess within those edges, still always something just sitting in a jumbled pile that I’m supposed to get to later. No matter how well I am — and even with an able-bodied husband doing more than his share of the work — we never get it all.

I have trouble thinking when I can see clutter. What it is about it, I don’t know, surely some gender considerations there, my insecurity about my disability always looming, and my personal idiosyncracies. But when there is visual clutter, my brain locks up and it is so much harder to process very basic things. And if only it were as easy as getting up and taking care of the clutter, then the energy I would be using on thought processing goes to the physical labor of cleaning, and I’m back to blank square one anyway, and a day later the clutter is back again.

And that’s the cycle I find myself in.

One day, a couple months ago, I sat in this chair trying to comprehend what I was reading, with a mess on the floor in my peripheral vision, and I spun around and thought to myself, why can’t this be beautiful?

This mess, this disorder, everything that comes with a life well-lived? The clothing on the floor, the half-filled mug of tea, the unmade bed, the shoes in the entryway, papers scattered about? Why do I feel like it weighs me down? Why can’t it be like the wrinkles and mottled skin and greying hair acquired with age: a reminder of everything you’ve done to earn them, a window into the life you’ve lived to get them?

Why can’t it be an indicator of richness? Why can’t it be something positive?

That one moment, I felt it deep inside. And it hasn’t come back. I just can’t look around and not feel weighed down by everything being so disordered, feel it reflects poorly on me, look at it and see nothing more than “something I should be doing but can’t do.” Something that is my responsibility, but I haven’t the capability. That is what pulls at me when I look at my mess, my beautiful mess. All I can see is everything I can’t do, while simultaneously feeling, in the back of my head, that I can do it but choose not to and that I am just of poor character, lazy, unmotivated, irresponsible, inconsiderate, slothful and selfish…

Maybe my physical mess, then, is a manifestation of my mental mess.

I just want to know. Why can’t I be beautiful too? If this is all I can do? Why do I feel lesser than the middle class folks who have these lovely tidy homes, not perfect and still full of personality, but tidy? They get to be beautiful, they get to be responsible and considerate. Why can’t I be too, if this is all I can do?

What will it take for me to look at that mess again, and see something grand? Will I ever see it again?