I have been on the Internet for a full half of my life. I was twelve when I got my first computer. I am days from turning twenty-four.

I more-or-less grew up on the internet. I’ve been part of a variety of online communities. You definitely start to notice some commonalities. I think I’ve pegged the median life of an internet community around three years: after that time, drifting sets in, or conflicts create divisions, or original members have moved on and it feels like the essence of the community went with them, and so on. And there’s often one or two people from the group that you keep contact with over the long run.

I’ve gained so much from my time online. I’ve connected with some amazing people. I’ve made lasting friends. I’ve had space to grow, to explore. Making those connections online as a young teen actually helped me learn to socialize offline (contrary to the panic of traditional-media sorts as new media grows more prominent and the new generations make use of the technology available to them). I still had access to a network of support when I found myself unable to leave the home or socialize in-person. And access to information, the opportunity to learn things that might never have been in my reach otherwise — from sexual education to photography and design concepts to politics and social awareness. And I needn’t go into detail, I think, for most of my readers to understand the value of activism no matter where it happens.

For all the internet has to offer, it can also be a dangerous place. And I’ve watched it happen in a number of communities I was a part of. There are all kinds of people out there, and not all of them with a sense of understanding or respect for boundaries. And it only takes one person, out of hundred or thousands, to change the shape of the community they target.

It can happen in many ways. Some of you might remember that I met my husband online. The community we met in was a close-knit group of friends. Every year we planned a meeting, choosing a place close to some percentage of the group, and would go out together to museums, restaurants, theme parks, local/historical points of interest, and so on. We associated with one another with our real identities, for the most part. As far as we knew. Until one member faked his own death to us, for reasons unknown, and several people who had grown very close to him fell out of the community as a result.

There was another community, a much larger one, where members sorted themselves into sub-groups of friends. And one group was dominated by this particular woman. She made a point to be as inflammatory as possible. She wanted to see drama. And she would target any individual who raised her ire (whether they spoke against her or just happened to be in her way at the moment). Target with harsh words, target with customized insults, target with twisted stories or speculations about the person, designed to exploit their vulnerabilities, displaying knowledge of the target and hir situation — she had done her research — that was as much a personal violation as the infectious lies that she weaved into her attacks.

I’ve seen this happen in multiple communities. These toxic individuals who strongarm their way into prominence. In the beginning they are boisterous but nonthreatening. But their loud, commanding style immediately sets them into a dominant position, no matter how few people know them at first. They use their dominant position to reward people who make a show of flattering them. They make connections early, carefully cultivating supporters, rewarding them with insider status if they show themselves willing to play by the dominator’s rules.

This toxic person begins to gain prominence, in part because sie begins to sew conflict. Sometimes it is subtle, not overt or obviously conflict-seeking, but rather setting hirself up to be wronged, or finding a sensitive issue to exploit. But sometimes it is blatant: outright picking a fight with other people, seeking out enemies. Either way, sie becomes a person that no one can any longer ignore. Sie forces hir way into a place of importance and relevance to all community members; they have to pay attention, because otherwise they might stumble in hir path, or break one of hir rules inadvertantly, and suddenly find themselves in the middle of a shitstorm.

This is the point at which the shape of the community changes: this person is terrorizing the community. Hir supporters are no longer simply part of another sub-group of friends, but now become enforcers. They cannot believe that anyone would speak ill of this person who has treated them so well, and they make sure that anyone who does so is promptly punished. They make sure that no one breaks the dominator’s rules; they pick fights with others in an attempt to prove their loyalty to the dominator.

The really disturbing part is when the big fights break out: anyone who speaks out against this toxic person is swarmed. The toxic person may or may not be personally involved. Sometimes, sie sits back as hir supporters do the work of harassing the dissident, picking at all their flaws, manufacturing them if need be. But sometimes, sie will get involved — seeking this person’s greatest vulnerabilities, and exposing to all observers — knowing that sie does not need to say the nastiest things — someone else will step in and do the dirty work for hir.

And people get the message. It only takes one time, although it may happen well more than just once. People see what the consequences are for speaking out against abuse. And people, quite rightly, would rather protect themselves — even if they feel brave enough to speak up, they can see already that it’s not enough to make it stop. They might have seen a great many people speak out against the abuse, and each of them individually targeted for attack, and the dominator keeping hir place of influence in the aftermath. People may not be happy, anymore, but sie still holds this power.

This is highly damaging in any community. I’ve watched it happen, watched how the dynamics of the community change, observed the consequences of pushback. In one particularly extreme incident, the bully actually researched the real-life identity of an enemy and called around to anyone she could find, including the target’s in-laws and boss, with a fabricated story that was just plausible enough to sew seeds of doubt, and the target actually saw consequences at work because of it.

But even when the abuse is confined to the online community, it can have real effect. I’m not a person who believes that the internet is a somehow less-important space than physical proximity. We are all real people, and we are having real interactions and making real connections, medium regardless. Harmful behavior is harmful behavior, no matter how it is facilitated. And abuse is no less abuse because the abuser isn’t sitting in front of you.

To the contrary: the invasion of space, the assault on a person’s autonomy and integrity, the violation of a person’s freedom of association, are just as real when they happen over a data line. These spaces are important. They might be the only space you can interact with distant friends. They might be the only space you can interact at all, because you are dealing with disability or poverty that makes leaving the house (or bed) and socializing in person difficult or impossible. (Which is why it’s frustrating when people dismiss online spaces as somehow not-as-real or not-as-important.)

When I’m part of a community that houses one of these bullies, I live in fear of the person ever being clued in to my existence, knowing that I could not handle being targeted like that. I have had to leave communities I cared deeply about because I couldn’t keep subjecting myself to those conditions. I have had to break connections with people I cared deeply about because they had some connection to the abuser.

And not just with online friends.

After I moved to Pittsburgh three years ago, I lost contact with every friend I had in California, my closest, deepest soul-mates (in a BFF sense). You see, my mother started stalking me online, seeking out every social media account she could find, invading every space she could find me in. So I left them. All of them. For two straight years I never logged in to my Myspace or Facebook accounts because she would be able to see that I had; certainly I couldn’t have interacted with anybody on them because she would find out. The friends whose emails I didn’t have before, I lost contact with. The friends whose other contact information I did have were the ones in my home-town social circle — the social circle my mother had infiltrated. So now, 2500 miles away in a place I’d never lived, knowing no one but my husband and his immediate family, I was completely isolated from the only support system I had.

Abuse has real ramifications. On real people. No matter where it is carried out.

When it comes to online spaces, some people may not see much of a problem. It doesn’t feel threatening to them. Annoying, maybe. But not threatening. And they don’t see why people can’t just ignore it. It’s not that hard to get past, for them.

But there are some people who can’t just ignore it. People who have been through this before. People who have been primed by previous abusers, primed to respond to certain tactics. For these people, even if they are not the center of a conflict, just being exposed to those same dynamics again can be incredibly harmful. It might not be the same person, the same place, the same situation — but the same patterns are playing out, and it’s not just that you have flash-backs to previous events; it’s the way you return to the state of mind you were in during the previous abuse, the way your patterns of thought go back to how they were then, the way you react to things restored to its previous setting. You might find yourself becoming highly self-critical, questioning your own experience of things, doubting your knowledge of yourself and what happened. You might find the same problems with self-loathing come rushing back. You might be wondering whether you really deserve it. You might start to see yourself as a burden again, highly aware of all the ways you drag other people down.

You can’t just ignore it away. You can’t just Think Positive your way out of it. You can’t just tell yourself that all these thoughts are untrue; no matter how well you understand something intellectually, there is something about the human psyche that still follows those same self-destructive emotional patterns when exposed to the same kind of situation that originally set them in place.

Just because you don’t actually feel like the community bully is going to find you at your workplace doesn’t mean hir actions aren’t having real effect on you — no matter how much you fight it.

Survivors of abuse are everywhere. And they are not always known as such. They are often invisible. And the consequences they suffer are not always apparent to outside observers.

What disturbs me as I watch this play out in yet another community I care about deeply is that this community is different. It’s not just about making friends or sharpening your debate skills or sharing memes with each other. This is a community with a purpose, and it has real effect. Real change is happening because of the conversations that we have with one another, puzzling out the direction of a movement, examining systems and learning how to change them, working with one another to advance the theory behind the movement, to find relevance, to find need, and to fill it. A lot of people have been introduced to concepts they might never have encountered without a thriving network of communities dedicated to common purposes. And, as a believer in bottom-up change, I fully believe that the influence of this community will spread.

And maybe it’s naive of me to expect better, but I rather do expect that groups of people centered around advocacy and activism would have some measure of awareness of abuse, how it works, how devastating it can be to the person/people targeted. I would definitely expect many of these communities to know that the abuser has often made sure to become in some way valuable or indispensable to the larger community, doing good things for other people, even as they do such harm to others. How often do people rally around an accused rapist and close in on the accuser, because they know what a good person the accused is and what good they are doing in [other area], so there’s no way they could be capable of something so heinous, and anybody who suggests something so patently ridiculous must have some sort of insidious motive…

You will see similar narratives play out in online communities — often without even the precept of an accusation. It is not the target who (publicly) initiates the conflict, in this case — the target may have been minding hir own business — but the abuser. All the abuser needs is a slightly modified version of reality — just plausible enough that supporters/enforcers and passers-by don’t bother to check for accuracy, but instead go on the abuser’s version of events — but just twisted enough to set up the target for harassment and humiliation, just something enough to suggest salacious details (real or manufactured) that a motivated supporter might dig up about the target, and just set up in such a way that any way the target might defend hirself would only create more embarrassment or incite escalation.

This is called manipulation.

What is most frustrating is that there are people who know that something is wrong here, people who are seeing red flags, but rather than choosing to back out of the whole conflict, they step in to question the target. Because maybe there are personal issues between the abuser and the target, they figure, but on the merits (as posited by the abuser), doesn’t the bully have a point? And then they unquestioningly accept the abuser’s terms of engagement, imposing those terms on the larger conversation, forcing the target to either engage on the abuser’s terms or not at all — which, of course, sets the target up for failure. And the conversation may not have proceeded on the abuser’s terms without the intervener’s assistance.

This is called enabling.

These people are willingly being used as tools. They are allowing themselves to be manipulated, for what reason I can only guess: sometimes, for the approval of the dominating person, for the points they win by staying on the right side of the conflict (“right” as in most dominant), or maybe they’ve had conflict with the target before too. Maybe there are other reasons, reasons I don’t understand right now, that aren’t as malignant in nature, even as they have a negative effect.

But it’s especially awful, when it happens that way — because it hurts so much worse coming from the innocent bystander, the person who had previously been a friend — it cuts so much deeper when it is coming from a person who generally acts in good faith, a person who generally acts with respect.

The target, then, is isolated: the people who see what is going on are too afraid to speak up, knowing that the consequences of showing any support for the target are having some of that scrutiny diverted their way. And it is understandable to protect oneself in that case, especially when past incidents have shown that even a great many people speaking up against the abuse cannot break down the power structure that the abuser has built.

And that is why the enforcers (whether willing or oblivious) are so frustrating. Because they are the ones who are defending that power structure. They are the ones who are making sure that even when the vast majority of the community is unhappy with the state of things, they cannot wrest back control of their space. The abuser, by hirself, could not win against an entire community that is sick and tired of hir actions. But when the abuser “has a point” — “does so much good” — when people would rather stay willfully ignorant to the structure they are reinforcing as they use it for their own benefit, because any position of influence is worth it because they would use it for good things –

And the system forges on.

How many voices have been silenced by this system we so casually reinforce?

How many people have been intimidated out of writing, building, working within the community?

The answer isn’t zero.

I’ve watched enough of these conflicts now to have lost count of the people who did speak up, who bore the consequences of doing so, and whose voices disappeared entirely after the storm passed. I’ve lost count of the people who became targets, and the campaign was a success, the person humiliated, and even when attention turned elsewhere they were too scared, too depressed or burned out, questioning whether they could ever contribute anything valuable — their voices quieted.

And there is no way to count the people who were observing silently, who might have joined the community, adding their voice to the conversation, contributing valuable perspectives and insights — no matter how small their circle of influence — who were too scared, having witnessed what can happen if they inadvertently step in the path of the wrong person — who decided it wasn’t worth the risk.

Again, this is devastating in any community. But particularly in this one — a community where we want people to use their voices — we want a diversity of perspective — we want a high degree of participation. This is a community where the entire point is to listen to these voices, and to engage with one another, to build upon each other — and no matter how small the voice, no matter how unknown the contribution — it still matters. A great diversity of small contributions makes a stronger, more stable foundation for a movement.

Every little bit is just as important as the next. And the higher degree of participation you have within a group — whatever commonality they share — the more likely the movement is to actually better their position in society, in life. The more you discourage participation, the more the movement becomes dominated by a few competing leaders. And the fewer people participating, the less relevant the movement becomes, for lack of a diversity of knowledge and perspective. The fewer people participating, the more the faults of the few leaders matter. And the more likely the movement is to eat itself inside out.

I don’t trust that it will make much of a difference, just me writing on my little blog. Especially when I am too fucking scared to name names. Especially when I already spent two days suicidal last week, and still don’t know whether I feel up to meaningful participation in this community going forward. Especially if that scrutiny comes back. I’m being fairly risky, writing about it outright like this. And it’s my own safety that I’m risking. And if I find myself targeted again, I might have to pull out of yet another community because of it.

But I will mourn this one a fair bit more. Because it’s more than friends lost.

It’s purpose.

Short background: Rush Limbaugh (link goes to Wikipedia article) is a US conservative radio talk show host who has risen to prominence in the US by inciting “controversy” after “controversy” with hateful rhetoric. He also went through an ordeal some time back for addiction to prescription painkillers, an incident that the US left likes to use against him. Recently he was rushed to the hospital again, which has spurred a new round of derision from US liberals.

Rush Limbaugh isn’t exactly a sympathetic character. His politics are vile and he makes a career out of escalating white male resentment into white male supremacy. And that causes real harm to real people who don’t meet the requirements to be part of Limbaugh’s He-Man Woman-Haterz Club.

How did he end up abusing prescription painkillers? I don’t know. Was he taking them for legitimate pain due to injury, surgery or a medical condition, and the usage got out of hand? Was he consciously using it as a recreational drug? I have to say I am still somewhat bitter about people who use the stuff I need to be able to get on with my daily life as a quick and easy “high,” ultimately making it harder to access needed medication. (But that is argument from emotion, mostly; I would posit that the real problem is a medical field and larger culture which does not take seriously the needs and concerns of chronic pain patients and is eager to punish people who step outside accepted boundaries.)

But even if he was just out for a high, I still feel unease when I see people use that angle to criticize him.

Because, here’s the thing… the same narrative that you are using to condemn this despicable figure is the narrative that is used to condemn me.

You are feeding, growing, reinforcing the same narrative that codes me as an abuser, that makes me out to be a good-for-nothing low-life, that makes it difficult for me to access the medication I need to be able to live my normal daily life.

When you laugh, joke, or rant about Limbaugh’s abuse of narcotics, you are lifting a page from the book of people who would call me a malingerer and interpret my behavior (frustration at barriers to access, agitation and self-advocacy to try to gain access) as signs of addiction. People who would, in the same breath, chastise me for “making it harder for the real sufferers.” (See why my bitterness about recreational use isn’t actually serving the right purpose, in the end?)

Maybe you don’t really think this way. But maybe the people laughing at your joke do.

And maybe, you just made them feel a little bit safer in their scaremongering about “addiction” and deliberate attempts to make life harder for us.

Scoffing at Limbaugh’s hypocrisy is one thing — but when your scoffing takes the form of a very common, quite harmful cultural prejudice — even when you don’t mean it to — it has real effects on real people’s lives. Sort of like that casual incitement that we hate Limbaugh for.

(Cross-posted at FWD/Forward.)

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 FWD.)

I will be updating this post as information breaks and coverage progresses.

Last night around 8PM, a man entered the back door of a Bridgeville gym, carrying a duffel bag. He entered the aerobics room, drew out a gun, shut down the lights and opened fire, then turned the gun on himself. As of this writing, three women are dead and up to a dozen more injured.

Scary enough, especially since I live within ten minutes of the place. But today, the man has been identified — leading journalists to his Internet postings. The Observer-Reporter posted a PDF of them; I am reproducing the images here. The text is available at his website (I’m back and forth on linking directly to it).

This man was deeply resentful of women who rejected him, deeply racist (but sadly, his views are not out of the ordinary either in the Pittsburgh area or the country as a whole) and clearly deeply twisted. He reproduced the name and address of a preacher who he claims said that he could kill a bunch of people and still go to heaven, then asserts that it is faith not works that earns entrance to heaven (and thus he is still bound there). It is deeply disturbing.

I really hope, in the coverage to come — and surely the feminist blogosphere will be all over this — that we do not resort to tired and dangerous images of mental illness, and find some way to blame this man’s sick heart on some neuroatypicality. I hope, but I know in my heart I will be proven wrong. Please, don’t do this. Don’t make this worse. Just don’t.

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Continued thoughts:

I really need to get the hell away from this story, but I just can’t. At least three women dead. He watched them on a regular basis. Plotted to kill them. He remarks about watching the “college-age” girls in the area. And masturbating to them. That could be me. Just walking around going about my daily life. He could be one of the random men out there and I would have no idea. What he was thinking or what he was capable of doing because of it. All of a sudden you realize you aren’t necessarily as safe as you want to think you are. These women living next to you are gone. And while most people will not pick up a duffel bag of guns and open fire, the things he thought and expressed are not out-of-the-ordinary. They’re things that a lot of men think, at least occasionally. Looking at you. Thinking that. About you. This isn’t out of the blue. His thoughts are not out of the norm. His actions, maybe. But our society fostered, fed, tended these beliefs. Made him feel safe in them. Make many more people feel safe in them. And when you feel that safety thinking these things? Why wouldn’t you feel safe doing something about it?

Our society told this man what he deserved. And our society told this man that certain methods in obtaining it are acceptable or even encouraged.

Our society tells men that women exist for men’s purposes. Our society tells men that violence is an acceptable means of achieving their goals, asserting their dominance, establishing their identity.

Domestic violence is the prime example: you can’t say it’s just bad apples. Because women die every day because of this entitlement. Women suffer violence every day because of it.

We don’t tell men: “It’s ok to beat a woman.” But we do tell them: “She probably provoked it. She shouldn’t have dressed like that. She shouldn’t have mouthed off. She shouldn’t have rejected you. Who does she think she is? She’s just after your money. Stupid bitch.” And we tell them: “You aren’t a real man if you don’t present as tough. If you aren’t willing to fight. You aren’t a whole person if you aren’t a ‘real man.’ You have to perform violent masculinity if you want to be taken seriously and retain control over your own life.”

And then we act surprised when men take 2+2 and end up with 4.

Most men will never do what this man did. But that doesn’t mean he’s a bad apple, that he’s unusual, that he stands out, he’s not like all those other men. To some extent, yes: he just happens to be the one who really thought the way to react was to open fire on a women’s aerobics class. Most men will never do that. But that doesn’t mean that the use of violence to assert one’s right to women one’s own purposes is not accepted, encouraged, in this society. Because it is. And this man grew from those same poisoned roots. Maybe most branches don’t rot the way he did. But that doesn’t mean they’re clean.

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Update, 1:25PM Eastern: Here we go. I knew it. Let me repeat: mental illness has been repeatedly shown in scientific studies not to be linked to violence. This association is harmful to mentally ill people who are just trying to live their goddamn everyday lives. Because people will look at them, and their illness, and assume that means they have the capacity to become another Sodini. And mentally ill people face serious consequence because of it. In housing, in employment, in health care access, in their social lives.

It’s not going to do anyone any goddamn good to turn Sodini into a “psychotic” “mentally ill” man. Maybe he was mentally ill. That has no goddamn bearing on this. Mentally ill is not a prerequisite for being violent.

It won’t bring back the dead. It won’t heal the wounded. All it will do is make life even shittier for the mentally ill people who are still here living their lives. Confuckinggratulations, you’re helping so fucking much.

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CAUTION: This content is disturbing.

Quotes from his diary:

Planned to do this in the summer but figure to stick around to see the election outcome. This particular one got so much attention and I was just curious. Not like I give a flying fcuk who won, since this exit plan was already planned. Good luck to Obama! He will be successful. The liberal media LOVES him. Amerika has chosen The Black Man. Good! In light of this I got ideas outside of Obama’s plans for the economy and such. Here it is: Every black man should get a young white girl hoe to hone up on. Kinda a reverse indentured servitude thing. Long ago, many a older white male landowner had a young Negro wench girl for his desires. Bout’ time tables are turned on that shit. Besides, dem young white hoez dig da bruthrs! LOL. More so than they dig the white dudes! Every daddy know when he sends his little girl to college, she be bangin a bruthr real good. I saw it. “Not my little girl”, daddy says! (Yeah right!!) Black dudes have thier choice of best white hoez. You do the math, there are enough young white so all the brothers can each have one for 3 or 6 months or so.

[...]

Just got back from tanning, been doing this for a while. No gym today, my elbow is sore again. I actually look good. I dress good, am clean-shaven, bathe, touch of cologne – yet 30 million women rejected me – over an 18 or 25-year period. That is how I see it.

[...]

[Omitted] Church in Pittsburgh, PA – “Be Ye Holy, even as I have been Ye holy! Thus saith the lord thy God!”, as pastor [omitted] would proclaim. Holy shit, religion is a waste. But this guy teaches (and convinced me) you can commit mass murder then still go to heaven. Ask him. Call him at [omitted]. If no answer there, he should still live at [omitted]. In any case, guilt and fear kept me there 13 long years until Nov 2006. I think his crap did the most damage.

[...]

I guess some of us were simply meant to walk a lonely path. I have slept alone for over 20 years. Last time I slept all night with a girlfriend it was 1982. Proof I am a total malfunction. Girls and women don’t even give me a second look ANYWHERE. There is something BLATANTLY wrong with me that NO goddam person will tell me what it is. Every person just wants to be fucking nice and say nice things to me. Flattery. Oh yeah, I am sure you can get a date anytime. You look good, etc. Pussies.

[...]

[The day before the shooting]

I took off today, Monday, and tomorrow to practice my routine and make sure it is well polished. I need to work out every detail, there is only one shot. Also I need to be completely immersed into something before I can be successful. I haven’t had a drink since Friday at about 2:30. Total effort needed. Tomorrow is the big day.Unfortunately I talked to my neighbor today, who is very positive and upbeat. I need to remain focused and absorbed COMPLETELY. Last time I tried this, in January, I chickened out. Lets see how this new approach works.

Maybe soon, I will see God and Jesus. At least that is what I was told. Eternal life does NOT depend on works. If it did, we will all be in hell. Christ paid for EVERY sin, so how can I or you be judged BY GOD for a sin when the penalty was ALREADY paid. People judge but that does not matter. I was reading the Bible and The Integrity of God beginning yesterday, because soon I will see them.

Today’s roundup brought to you by oh look a feather toy!

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.

The title of the press release: “Promiscuous men more likely to rape”

The title of the Telegraph article: “Women who dress provocatively more likely to be raped, claim scientists. Women who drink alcohol, wear short skirts and are outgoing are more likely to be raped, claim scientists at the University of Leicester.”

The researcher who was interviewed spoke out about the misrepresentations of her work (she is an MSc student and this was her dissertation, which is also apparently unfinished).

According to current.com, the article has been pulled and corrections have been issued. It’s hard to see how they can explain away something like this.

The Bad Science blog offers this update:

Via @jackofkent, here are the articles Richard Alleyne of the Telegraph has written about recently. I’m not saying anything. I’m just saying. Is all.

www.journalisted.com/richard-alleyne

From Pharyngula. H/T hearshot

(Cross-posted at Feministe.)

This is a post about a bit of a blow-up during my guest posting at Feministe. I am already emotionally exhausted from this, so I will not cross-post this at Feministe.

***

Allow me to indulge in a little bit of inside-hockey.

Hockey is a very physical sport. Part of this sport is “checking” or “hitting” – basically running into an opposing player in order to tie him up for some time so he can’t be out there making productive plays for his team. (Brooks Orpik demonstrates here, making four hits in a fifteen-second timespan in what has been called “The Shift.”)

And there is a concept in hockey we call “taking the hit to make the play.” This happens when a team is trying to set up an offensive play to get the puck to the net. A player on one team will let the other team’s defenseman hit him as he passes the puck to one of his other teammates so that, in a reverse-psychology sort of move, that defenseman is tied up in finishing his check, instead of out there defending the puck from his teammates.

So basically, you are accepting that physical hit because you know it will increase your offensive chances.

***

Things got a little out of hand in the comment thread on my post about the painkiller ban proposal.

I am still adapting to writing for a larger site. It is important to me that PWD feel safe commenting with their experiences. IME, they are much less likely to contribute if they have to carefully moderate their tone and make sure not to offend anyone who has privilege over them. They need to be able to speak candidly about what is going on in their lives without modifying their framing to be acceptable to the masses. And, as has been often discussed on Feministe, while “diplomacy” and 101 education are valuable things to do, if we allow it in every thread, it makes it impossible to take our discussion to a more advanced level.

I focus on making space for PWD. People who are currently not disabled are welcome as long as they realize that they are not the focus in this space. They, their needs, their ideas, their conceptions, are not the center in this space. They get every other space in the world for that. Every other space in the world is specifically built to suit them. If they are willing to relinquish that focus for a time, to listen to PWD, to do their due diligence in educating themselves on the background issues, and treating PWD with respect and accepting when PWD say they are doing something wrong or harmful — then they are welcome.

If they would rather insist that their ideas are more important, more valuable, more reasonable — if they would rather argue with PWD, if they would rather assert their understanding of the issues as clearly better/more reasonable/more in-touch/more important — if they will not listen to what PWD are telling them, accept criticism, and bite their tongue for one minute in their entire life to give deference to how PWD define their space and their experiences — then they are not welcome.

I am sure most of you are familiar with this framework. This is a feminist site. If we were speaking about men and women, rather than abled and disabled, would not most of you advocate the exact same definition of space?

Yesterday, we saw a lot of the latter comments in a thread where people with chronic pain were very clearly communicating the effect this policy would have on them. We saw comments that explained why the policy was being considered — as though the “why” hadn’t been laid out in the original post, reasonably, without argument from emotion.

And I responded angrily. The development already had me quite upset. PWD have to jump through so many hoops just to get barely-adequate care in this society. There are new restrictions every time you turn around. Commonly, you have to go through a dozen steps to get a product or service that’s watered-down and half the quality of what an abled person can access in one step. This is the second shift for the sick. It is very hard for many abled people to understand exactly how much we take on when we become disabled. The onus of access lies with the disabled person to correctly maneuver all the complicated and sometimes contradictory regulations, to take all the necessary steps in the right order at the right time, without mistake, because — like those long math problems in second grade — if you screw up one tiny thing, everything else might come tumbling down with you.

We had commenters “helpfully” inform us that we could just get a script for the narcotic agent alone and take Tylenol with it — and then come back defensively when PWD responded by saying but that puts an unfair burden on us when we are carrying such a heavy burden already.

I wish I’d had the energy to moderate that thread calmly, evenly, without emotion. To carefully explain to people why I believe what I do, why certain things are harmful even if they don’t seem so from the outside, why this regulation would be wrong and discriminatory, and why it is evidence of a larger problem in the structure of our society. To explain all of this in a measured, reasonable tone, with background and sourcing.

Academically.

I didn’t have that energy. I have chronic pain conditions. I am already pushing myself so hard to be able to write what I want to write while I’m guest blogging here, and handle the comments, on top of handling my life. Yeah, you know, I have one. I have to take my 14.5-lb feline leukemia positive cat into the vet for an exam and vaccinations to make sure he doesn’t catch some random infection and die. And take his 10lb sister in too to make sure she’s vaccinated, so she doesn’t end up catching it from him and getting sick herself. I have to help my husband prepare dinner. I have to clean the filthy bathroom. I have to take a shower, something that is enormously taxing on me. I have to run household errands. And, you know, visit with the in-laws for the holiday. All these things sap my energy.

And when my energy is not tip-top, my coherence suffers too. I have trouble putting words together. I get flustered.

So I’m not going to be able to respond reasonably every single time. Them’s the breaks.

Anger. Anger is a feminist issue. The anger argument is a tactic that the privileged party uses to shut down complaints from those lacking privilege. We recognize this when it is a man telling a woman she is too angry, hysterical, hostile, harridan/harpy/banshee/we all know the slurs. It is wrong. It is a way to simply dismiss the woman without having to actually pay attention to what she’s saying. It is taking advantage of the privilege you have over her.

I don’t give a flying shit whether that’s what you intend to do when you pull the anger argument on someone — anyone — a person of color, a disabled person, a queer person. This is well recognized in feminist theory; the argument that the unprivileged person is “too angry” and that people would be more receptive to their arguments if only they would state them sweetly, “you catch more flies with honey than vinegar” –

Don’t tell me you don’t recognize what bullshit that is when the non-privileged person is complaining about something that harms them, and the privileged person cries that they just can’t listen to you until you put it in such a way that soothes their ego.

Oops, I’m getting angry and unreasonable again, aren’t I?

So I responded angrily, mockingly, to comments that I thought were unproductive. I’ll give you a tip right now: last year I made sure to be calm and patient with a set of difficult commenters on one of my guest posts, and it went on for a hundred or so comments, before he gave up and began saying that I and other posters must just be depressed because we disagreed with him.

It did me a lot of good to engage patiently with that guy, mm? He walked away with respect for my argument, did he? No. He didn’t. He walked away the same as the opposing commenters walked away on yesterday’s post.

Anger is valid. Anger is a rational emotion in response to a world that is unjust. And to deny a person anger is to deny their humanity. It denies them the full range of human experience. It denies them the ability to process events in a natural, human way.

I wish I had been well enough to comment calm and patiently on yesterday’s post. I am being honest here. I wish I had been able to just explain diplomatically why I see things the way I do. Because that can be a valuable thing to do.

However, doing so can also transform that commenting space to one that – again – centers around the privileged person’s conception of the world. It forces other commenters to carefully frame their comments in a way that is palatable to the privileged person. And thus it completely shuts the door on a more advanced conversation about the issues affecting them.

No offense, but I’d rather shut the door on the privileged people’s protestations than on PWD’s ability to explore political theory relating to them. Sorry.

Oh: and pandas are cute.

***

My writing is, as a commenter described at one point, is a messy marriage of personal and political.

I write from a personal perspective, but I draw political conclusions from my experiences and observations, and those of other people like me.

It may not be a style of writing that appeals to everyone. It may not be palatable to the masses.But it is important.

I entertain abstract, academic style discussions. But I connect them to reality on the ground. This is vital. We can have as many cute little reasonable debates as we like, but if we never stop to pay attention to what people are actually experiencing in this world, what fucking good are we doing?

We all have different roles. And I know mine.

I bring my personal experience to the table. And there is a reason for it. And I am reminded of it every time a reader comments or emails me to tell me how similar their experiences are, and that they’ve never heard anyone affirm them before. They have never read something in a political context – and make no mistake, feminism is a political theory – that addresses their life.

People with disabilities are largely segregated from wider society. Institutionalization is alive and well today. And barriers to access keep many PWD stuck at home, unable to participate in all different aspects of society.

And many of us are out there, mixed among the wider population — but invisible. Our disibilities are not readily apparent. And therefore our experiences are invisible as well.

My writing aims to make those experiences visible. To expose them to the rest of the world. To force them in the faces of able-privileged folk. So they see that we exist. So they can no longer walk around under the impression that we are not among them.

When our experiences are invisible, our needs are not addressed. Society is already built around the needs of the currently able, to the exclusion of the rest of us. We have made some strides, but there’s still a long way to go. And part of that is making the rest of society realize that people with disabilities are all sorts. We are in wheelchairs and walkers, we use canes. We use medication and TENS units you can’t see. We use braces. We are on bed rest. We have assistant, we walk alone. There may be a visible physical difference or a noticeable behavioral difference. Or we may look and act just like an abled person.

Most of society has trouble recognizing this wide range of disability. When disability is recognized at all, it is within the narrow narratives that PWD have come to recognize: the pitiful/tragedic story, how awful it must be to be “half a person“, or the inspirational/supercrip story, watch in amazement as sie overcomes hir disability! There really isn’t room for any other kind of story in wider society — and yet our stories are so diverse. And so important.

That is why I tell my story. It is only one story. But there are many people like me – and they’re out there writing too. And I want to make sure our stories are visible. And my goal is to make them so visible that they can no longer be ignored.

Everybody needs to be exposed to the reality of living with a disability. Everyone needs to be exposed to what actually happens, in practice, in our lives. All the theoretical discussions in the world aren’t worth shit if we’re still left to die on the streets in large numbers.

Unfortunately, able-privileged spaces (that is to say, almost every space in the world) tend to entertain only those theoretical discussions. The academic, the abstract. To the exclusion of what is happening on the ground. Because that’s messy and hard to reconcile cleanly in a calm, level, reasonable way.

That’s why I tell my personal stories. Because there are lessons to be drawn from them.

The thing is, when I tell my personal stories, I expose myself to a society that is ignorant at best, actively hostile at worst. I expose myself to all the biases contained therein. I expose my self to the public, and everything it can bring.

I take the hit to make the play.

***

I handled yesterday’s thread imperfectly. And it exposed me to a set of people who took offense at my anger – yet found it completely appropriate to make insinuations about my character, my state of mind, and even my sobriety – in one case stating “…this kind of vehement, angry response in a discussion that is relevant to one’s ability to obtain an addictive substance seems eerily familiar to me, as someone who has lived with an addict for nine years. When a rational person suddenly behaves irrationally when his supply is threatened…”

You can find the discussion yourself, at the web site of one of the key commenters in that thread. Right now, I’m just hurting. I tried. I messed up. But fucking hell, I am putting myself on the line in hopes that maybe, in some small way, I can advance the conversation on this issue so that other people currently harmed by certain attitudes might some day see a better world — and maybe find a way to cope in the meantime.

And it hurts.

I’ll leave you with the words of Cara and Abby Jean.

The thing is

The thing is, most of us feminists know well enough that when an anti-choice man comes into a pro-choice woman’s space and tell her that she’s wrong on the subject of her own reproductive rights, there is, no matter his phrasing, nothing “polite” or “reasoned” about what he is doing.  Most of us feminists know perfectly well that the man is still arguing that the woman, the woman to whom he is speaking as well as all women, does not have a right to make decisions about her own body.  Most of us feminists know that when that man gets a negative response, and he counters with an argument about how the woman shouldn’t take it so personally, he is displaying privilege.  Most of us feminists know that there is nothing “abstract” about a woman’s right to bodily autonomy, and that it affects real women’s lives.  It’s not generally lost on us that most of those who spend time treating the “abortion debate” as an excuse to show off fancy rhetorical skills are men.  We generally know that when women point out that hey, this actually affects our lives, we are shot down with the admonishment to not be so “emotional” on the subject.  And we generally know that this is wrong, and hugely misogynistic.

But ah, it’s called “privilege” for a reason, isn’t it?  And so for many, many feminists, these simple, basic understandings that we lament so many men not getting, go out the window when talking about a different oppressed group.  And white feminists will tell women of color to stop being so emotional about the “objective” debate regarding whether or not something is racist.  And cis feminists will tell trans women to stop being so emotional about the “objective” discussion of whether or not their gender identities are legitimate.

And temporarily able-bodied feminists will tell women with disabilities to stop being so emotional about the “objective” discussion on whether or not their experiences are valid, and whether or not there is real reason for their concerns about decreased access to needed services.

And then they will fail to see why what they’re doing is wrong.  Because, well, that anti-choice guy, he’s an outsider.  But us, we’re all feminists around here!  And no other identity could possibly matter!  So we’re all friends!  And how could you dare treat the privileged, ignorant, sticking her foot in her mouth “friend,” the same way that you treat the privileged, ignorant, sticking his foot in his mouth “enemy”?  It’s so unreasonable!  They were just making a reasoned argument and demonstrating their rhetorical skills on this fascinating matter!  STOP BEING SO IRRATIONAL.

I am a person who is privileged in virtually every way other than her sex.  And this is exhausting, infuriating, and wildly depressing to me.  I can’t even begin to imagine the feelings of those women facing further oppressions, who are the actual objects of these patronizing diatribes about reason and logic, from supposed “friends” who know enough to know better.

it is so hard…

it is so hard for women to talk about their own lives and experiences without being attacked. even sharing those things with an audience expected to be mostly sypmathetic, or at least expected not to fashion the author’s own words into a weapon to attack the author herself, is a risky and sometimes very dangerous act.

a lot of these problems seem to stem from a reluctance to give any deference to the person’s own account of their lives and experiences. we think that our academic skills, our research and our logic, can give us full and complete insight into and understanding of an issue – regardless of whether it is something that could ever affect our lives.

but there are things that you cannot understand until you have lived them, cannot learn unless you are taught by people who have lived them. whether it be the amount of hassle and difficulty caused by adding another separate medication to an already complicated pain management regiment for a person with a disability, or how the timing of bus transportation can dramatically increase child care costs for working single mothers – these things are learned most effectively from those who have experienced them.

so to enter a space where a person is talking about their own experiences and to tell them they are wrong, that they will not be affected that way, that it is not that big a deal, and that you know so because of your research or your logic – that is the opposite of learning. that is affirmatively shutting down discussions which could lead to learning. and it makes it much less likely that the person with experience – the person without whom you cannot learn the essential details of the issue – will be willing to participate in such a discussion in the future.

UPDATE, July 7: Via Lauredhel, the FDA has made a decision regarding pain pills Darvon and Darvocet, which are pain killers containing a different ingredient (propoxyphene, a pain killing ingredient related to methadone but less addicting) with similar concerns (accidental overdose). They have decided against a ban, but are imposing stronger warnings on the products.

The reason they give, at the end of the article: “the benefits of using the medication for pain relief at recommended doses outweighs the safety risks at this time.” If nothing else, it is somewhat encouraging. If this is their thinking on Darvon/Darvocet, we can hope that similar thinking will guide their decision on Vicodin/Percocet.

***

And according to the New York Times, the FDA

… is not required to follow the recommendations of its advisory panels, but it usually does.

Emphasis mine. In other words: the ball is rolling.

Vicodin and Percocet are two commonly-prescribed narcotic painkillers. They combine hydrocodone or oxycodone (respectively), the narcotic agent, with acetaminophen, brand name Tylenol.

Acetaminophen is coming under fire because abuse of the drug can lead to liver damage. The safe limit for acetaminophen has generally been regarded as 4,000mg per day. That translates to two extra-strength Tylenol (500mg each), four times a day (eight pills total). The dose of acetaminophen in various combination drugs varies, usually 325mg but ranging up to 750mg.

The panel voted against a ban on over-the-counter cold, flu and sinus relief medications, the vast majority which contain acetaminophen. Apparently these medications aren’t a concern, despite containing just as much acetaminophen and being available over-the-counter, where consumers do not have a doctor and pharmacist counseling them on how to take the medication.

In honor of 4:20; fashionably late.

It is a given that, when there is cause to mention my fibromyalgia to anyone who did not formerly know of it, there is a high probability that a person will “helpfully” “suggest” some miracle treatment they’ve heard about, or know someone who knows someone who’s tried, etc. Honestly, you get all kinds of suggestions, from warm water pool therapy to probiotics to eliminating aspartame from your diet to … yes, my friends, pot.

Marijuana has been shown to have analgesic properties, you know! There’s no way a chronic pain patient has ever heard of that before! (Honestly, I think  these sorts of pot evangelists latch on to the idea of someone they know who might need pot for a medical purpose! because it legitimizes their own use in their minds. But that’s not what I wanted to write about.) Anyway…

I’ve never smoked pot. Or tobacco. Not one sip of alcohol has ever passed my lips. I’ve never tried any of the recreational drugs that are so popular on college campuses.

Make no mistake: I take drugs. Oh, do I ever! But I take them by necessity. I do not take them for fun. I would rather not have to swallow 14 pills/day (minimum) to be able to function on a basic level. Honestly, I hate taking most of them. A couple of them, fortunately, offer significant benefit with no downside beside the price tag. But others have unpleasant side effects and addictive properties. I have a long-time love/hate relationship with Vicodin in particular (pros: allows me to get out of my bed/chair and do things; cons: digestive issues, artificial mood high/”manic” phases, problems with focusing and retaining information, problems relaxing, probability of developing a tolerance a.k.a. dependence*). While there are incredible benefits in taking these drugs, there are also considerable downsides that can’t be ignored.

So the last fucking thing I want to do? Is take more drugs. For the hell of it. I take more than enough medication that I fucking hate taking, for reasons too varied to fit in one blog post. I have a fucking awful relationship with taking medicine. Me and taking medicine don’t get along, yo. I don’t think about it on a daily basis, but it’s sitting there under the surface every time I pop those pills in my mouth. I don’t think it’s something any fully healthy person can ever understand that inner conflict. And y’all know I will stand up to anyone who tries to judge me for taking this shit. I would not be where I am in life right now if I did not have all these drugs to rely on. But that doesn’t mean I’m totally ok with taking them.

That means I have zero interest in taking any drugs for any reason other than it will help me do more than I can do right now. (And even then, I’m not terribly excited about it.) Especially when those drugs could have serious and potentially fatal interactions with the drugs I’m already taking.

This is not a judgment on anyone who does use those drugs: the social drinker, the recreational marijuana user, even the beleaguered cigarette smoker. There are real downsides to every drug, but that does not erase that they can be enjoyable and beneficial for folks who use them responsibly. And this is yet another time to emphasize that a person can, in fact, hold two ideas in one’s head at the same time: I can vehemently reject recreational drugs for myself while being perfectly content with my friends smoking a bowl or heading out for a drink. I make no judgment, moral, character or otherwise, on recreational users. The only judgment I make is on my life and my needs.

Here is the thing about these “suggestions”: they’re not just unhelpful; they’re insulting. They rest on the assumption that there’s no way I could have a basic understanding of my own body, that there’s no way I’ve ever heard of this treatment before, that there’s no way I could have tried it already, that there’s no way it could be a bad choice for me individually for any of a million different reasons. This is not what’s running through a person’s mind as they make this suggestion, but if that person stopped to think for half a second, and reflected on these assumptions, they would most likely decide against making the suggestion. Because there is no way that a person could recognize my individual humanity — recognize that I have my own individual body which has its own ways of working and its own needs and its own history — and still make that suggestion.

Consider, for example, my family background, which is a major factor in my decision to stay far away from pot and alcohol. My three siblings were a generation older than I, old enough to have children who were the same age as me. (My oldest brother is in his 50s. I’m 23.) My sister lived sixteen hours away in northern Oregon; my two brothers lived in town, and I spent a good amount of time with them (including several years actually living in their respective homes as one brother was going through jail).

My entire immediate family is mentally ill. Both brothers have been diagnosed with schizophrenia with psychotic episodes. My mother fits every criterion for borderline personality disorder, though she has never seen a mental health professional in her life, and the suggestion that she might need to would be met with accusations of a conspiracy to run her out of town. (This is not an embellishment; it was a regular pattern throughout my childhood.) One brother and my sister have bipolar disorder. And all four (my mother, sister and two brothers) suffer clinical depression and anxiety to varying degrees. My sister is the only one to seek any treatment, and even then only intermittently.

And I’m sure you can guess where this is going.

My brothers drank. Casually, throughout the day, totaling at least a six-pack each on a normal day, for awhile. It went up and down throughout my childhood, and once in awhile one brother or t’other would swear off the stuff, declare himself clean, but be back to it a month later. And yeah, you know, anyone drinks that level, they’re going to get drunk. But my brothers didn’t just “get drunk.” They got… well… crazy. The worst incidents I can remember as a kid always involved alcohol. Severe paranoia, apparent hallucinations, imagining things that didn’t fit in reality at all. Psychotic episodes. Several times, they were targeted at me, as young as six and continuing into early adulthood. I was never physically assaulted, fortunately, but I can’t exactly say I was unaffected.

Given my experiences as a child, suffice to say, I don’t want anyfuckingthing to do with alcohol.

And, of course, marijuana can exacerbate schizophrenia. (Please, please take note of the word exacerbate, not create, and don’t lecture me in comments.) Um, severely.

And I am keenly aware of my relation to these four people — immediate relation — and the severity of their conditions. (It waxes and wanes, over the years, as any condition does, but it is quite severe during the bad times.) And I am also keenly aware of the tendency of these two drugs to tap into a predisposition to these conditions. And, though I seem to be ok so far (getting away with “mere” anxiety disorder), I’m not going to make the mistake of assuming I’d be any different. Schizophrenia, in particular, tends to lie dormant in women until their twenties and early thirties. And I have to live with that hanging over my head (and my husband’s) for some time yet.

Given all that, do I want anything to do with pot? Well. No.

Do you think any of that flashed through the mind of my eager acquaintance when they decided that all I might need is a small toke? I don’t think so.

That’s my individual story. I’m one person. I don’t know what the hell is going on in the life of the next chronic pain patient you might meet. That’s the point. You just don’t know. You don’t have the slightest concept of what their background is or how their body works or what they’ve tried before. So why do you assume it’s totally benign to throw this in their face? Why are you acting as though you know their body, their history, their experiences better than they do?

Do I have the time to detail everything above every time somone “helpfully” informs me that marijuana can be good for pain relief? Should I have to reveal all this stuff to total strangers, or even acquaintances, coworkers, casual friends? Even if all this stuff wasn’t there, and I just didn’t feel like using it: why can’t I have that decision respected?

Drugs are not, and never will be, an enjoyable experience for me. They are a necessary… well, not evil, but certainly not altogether positive. Either way, they are a necessity for me to be able to live the life I want to live: to be able to do the normal things most people take for granted. You know what doesn’t feel like a nice, relaxing escape for me? Yeah, I’ll let you answer that for yourself.

Bottom line: Respect every person’s sovereignty, every person’s ultimate control over their own life. We’d all appreciate it.

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* Repeat after me: De-pen-dence. Not “addiction.” Physiologically, the two can be identical. But a person is addicted when they have no need for the drug; they are dependent when there is a need for the drug for medical reasons.

The specter of “addiction” is weilded against pain patients — acute and chronic — and make no mistake: anyone who speaks threateningly of “addiction,” when you are in real pain, doesn’t have the faintest understanding of the interesctions between substance abuse and chronic/acute pain treatment. Dependence is a real issue in pain patients, and as such, they must be monitored closely by a medical professional who knows wth they’re taking about. But the possibility of dependence does not automatically exclude controlled substances from the list of possible treatments. It is one of many issues which must be handled with care and nuance; the possibility of dependence should inform the decision, not make it. Each individual patient will have to make decisions with hir MP based on all the factors in play, including what type of pain (which can change which drugs are in play), how severe, how long it is expected to last, the patient’s physical and mental condition(s), interactions with other drugs, how certain drugs have worked (or not) on the patient in the past, and so forth. Anyone who automatically skips that conversation to get into scare tactics and character insinuations about addiction is not worth the trees that were killed to make fancy sealed papers hanging on their office wall.

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Addendum: This post took me a good four days to complete. It’s a very deeply personal subject to me. It is definitely scattered, definitely defensive in tone. But I don’t feel I have the energy to rework it to be more coherent without also destroying the heart of it. I meant to get across the insult and violation of privacy I feel when someone lobs the pot “suggestion” at me, to continue exploring how these “suggestions” affect people with disabilities and chronic illness, to make clear why no, not all things are good for all people, and that right to refuse, that sovereignty, must be respected. I do feel I must add that intellectually, I know that there is nothing “wrong” with taking prescription (or any) drugs, but unfortunately it’s not so easy to accept that emotionally (much how the fat-accepting person still has trouble with body-negative thoughts). But my decision to stay away from recreational drugs is, well, fraught, and I don’t think a lot of people understand that — understand how using drugs can be so exceptionally not fun for somebody who has to rely on drugs to be able to brush hir teeth and get dressed most days, much less anything more involved than that. So: it is definitely a “brain fog warning” post, definitely a harsh tone, but it came directly from the heart, so it stays as it is.