(Cross-posted to FWD/Forward. See more BADD 2010 at Goldfish’s blog.)

I’m pretty open about my health issues. To be honest, I don’t know any other way to be. I know how to strategically hide my disabilities from strangers in passing interactions, but from the people with whom I interact on a daily basis? Given my appearance — tall, slim, young white girl, pretty enough, clean and conventionally dressed, perfectly middle-class — you’d think it would be easy to keep from communicating variant health, while in reality it is highly tasking. It takes energy to mask my medication-taking, body-resting, trigger-avoiding, activity-budgeting ways from the people around me, and I’m already running an energy deficit just to be around them in the first place.

So fuck it. I don’t hide it when I have to down a pill. If pain, fatigue, or cognitive issues are preventing me from doing something — a task requiring me to stand up or walk somewhere when my back pain is flaring up; speaking with anyone by telephone when my head is throbbing and my brain is not processing full sentences — I say so. I’ve stopped bothering to tuck in my TENS wires to make them completely invisible. When people ask me about the Penguins game last night, the response they hear begins with a mention of my 8:30 bedtime.

There are drawbacks to this. Sharing or not sharing information about one’s health is an extremely fraught decision; some people consider this information rude and gross (even when the actual content is totally innocuous), it can invite unwanted questions and speculation, and there are people who will use your undisguised behavior or the information you have volunteered against you in the future. It amounts to a choice between a life of concealment, which can quickly drain a person’s spirit and often aggravate their actual condition — and a life of vulnerability, never knowing what will be held against you, or by whom.

***

The office I work at is lit by fluorescent lamps, which can trigger migraines for me, but the light level was reasonable enough that it wasn’t a problem up until that point. Last time the maintenance guy came through to replace the select few old-and-broken lights, I asked him to twist the bulbs above my desk so that they would dim or turn off, and he did so, and I was extremely happy. The lights were ok when they were on, but the new lights were already making my head hurt just having been replaced a couple dozen feet away. Now, my desk was a safe and comfortable space and I could work without that particular disruption.

Around Christmas, the safety coordinator in my office — who seems to dislike me, demonstrated well before this incident, and repeatedly since — took up a new pet project: replacing the lights. The safety coordinator decided that every single tube in the office needed to be replaced with brand new tubes at double the former intensity. And not only that: previously there had been two tubes per light; now, she wanted to fill all four tubes, in every single light, with that brand new double-intensity fluorescent lamp.

I arrived at work the day after the lights were put in, and I lasted five minutes at my desk before I had to stumble away. I was having an asthma attack (and I cannot use inhalers); my stomach was churning violently; my eyes were throbbing, and I actually lost vision altogether for a couple minutes — and my field of vision was covered in multi-colored spots for hours afterward, and my eyes were blurry and out of focus — I could not make my eyes focus, anywhere, not to read the screen in front of me or the clock on the opposite wall.

Five minutes. The time it took to boot my computer and email my supply person asking if my lights could be changed.

The answer was no, which marked the start of a months-long ordeal with Human Resources (which consists of three people, one of whom is the safety coordinator whose pet project this was in the first place). They told me that if I wanted it resolved quickly I shouldn’t file an ADA accommodation request, and then stonewalled me and eventually told me the only way to resolve it was to file an ADA. They told me it would be useless to make any change because “what if she moves somewhere else” (um, I work a specific program, do not have the job title to work anything else, and this program has never been anywhere other than this area of the building). Eventually I found out that at the safety meeting that preceded this decision, my supply person (who is an assistant back in the administration/HR area) raised her hand and specifically said, “Amanda would prefer to have her lights turned off, because it aggravates her migraines” — remembering when I had requested this of the maintenance man — and one of the union stewards, who knows I am disabled with a chronic pain condition, replied, “No, we can’t do that, we have to treat everybody exactly the same. No one can be treated differently.”

I had taken the initiative to move myself to the one desk where the lights were burning out almost immediately — checking messages on my phone every ten minutes and continuing to do the same work I had done before. On the day I left for two hours for a doctor’s appointment, HR chose that time to hold a meeting with my supervisor to relay the order that I return to my normal desk, as it was, no change to the lighting situation — and I was advised that refusing a direct order was a fireable offense.

I was “allowed” to wear sunglasses in the office, which merely delayed the onset of my migraine by a couple hours (primarily the eye strain from trying to read and operate a computer screen with sunglasses on, secondarily the light itself); I was leaving work early more often than not. The safety coordinator at one point came over to sit down at my desk and ask me — gesturing with her hands held over her brow, parallel to the ground — “Can’t you wear one of those — what are they called? –” Sigh. “Visors?” “Yes, that!” No, it wouldn’t, because the light was glaring off my desk, the windows, the file cabinets, the walls — blocking one direction of light in that situation would be like trying to take a shower with an eyedropper. She was unsatisfied with this answer and walked away. (Of course, if I had tried to use “one of those” before she came up with that bright idea, she probably would have called another meeting to order me to stop violating the dress code.)

My specific accommodation request — to simply twist the bulbs so that the lights above my desk were off — was eventually denied because nonharmful lighting would be a danger to the workers around me (all five of them hated those lights and had complained to HR about them as well!) — the difference between the old and new lights was like the difference between a sunny summer’s day and the surface of the sun; it’s already very brightly lit. They decided to order a cheap full-spectrum filter — and tsk to me that they would have to see if it was in their budget — that specifically advertised that it only reduced the light’s brightness by some trivial amount. I protested to them repeatedly that it was the brightness that was the problem, not the color of the light, but they would not allow any change to the brightness. Safety concern. Turned out I was still getting migraines, so they gave in to my tired request to order the gradient sleeve filters that were listed immediately under the original filters they had bought. And that worked. By… reducing the lights much as if they had been twisted off. As I requested in the first place. Which would have cost precisely nothing.

Well, it’s worked well enough since then. And since, ahem, the ballast was broken on a couple sides trying to install four sleeves on two sets — the lights are connected such that if one light goes out, its companion on the opposite side does too. So that took care of four lights for me. Of the four remaining, the gradient sleeve is turned to provide an amount of light I am happy with. And all is well.

At least, it remains well when my desk is of any use to me. But when my motherboard blows a couple capacitors and my computer is out for the count during one of the busiest weeks in our program, and I’m already marked as a Troublemaker by HR and thus do not want to go around swapping computers by myself, all of a sudden I’m right back in the same situation I started. Now a few of the new bulbs have dimmed with time, but it’s all shaking my stable footing in terms of pain.

My coworker offers me her desk, because she is spending most of her time upstairs. It is the desk next to mine, across the aisle. The desk in the corner of the building, with twice as many windows, and fluorescent lights that have not dimmed a bit, remaining significantly brighter than any in this quarter of the building.

I take it for the first afternoon, when my computer has just died, because it’s the only space available. And I pay for it. Because I’m seeing spots again by the end of the workday. My stomach is doing acrobatics and I’m afraid I’m going to vomit all night. It’s hard to breath, hard to think, hard to focus my eyes. Sensory overload, feel like I’m going to explode.

This was early in the week. I spend the next couple days parked at someone else’s desk, until that person comes back to work and I am deskless again. My coworker offers me her desk again, and I decline, saying “I can’t sit there because of the lights.” Oh, okay, she says.

Until the next day, Friday, the busiest day, when I am rushing around coordinating things for a dozen different people and being yelled at by clients all the way — using the maddeningly slow and unresponsive computer connected to the printer/scanner/fax equipment in the station next to my home desk. Seeing my frustration with this instability, my coworker again offers her desk. And again I decline. And this time, she throws in: “Well, if you change your mind, you can have it!” In her sweet, quiet voice, and she heads upstairs again.

Because this pain is really ultimately a personal decision.

This is the person who, sitting at that station computer scanning, asked me sweetly if I could turn my desk fan so it would cover her too (the building’s climate is very poorly controlled) — and I agree, because the air will still hit me and it is, seriously, really hot in here — but finishes her request with a laugh, “since I can’t have any light here.”

Sweet and quiet.

Sometimes, the people who are going to hurt you are easy to identify. Like my safety coordinator, who has tattled over the most trivial and frankly inaccurate things to my supervisor (who knows she is full of shit).

Sometimes, they aren’t.

***

I can never trust anyone to understand.

This knowledge always hangs in the back of my mind. It is disturbing, in the sense of creating unrest, destroying stability.

On the other hand, truly accepting it could free me — no more time spend artificially dividing people into categories of “Volatile, Will Probably Hurt Me” (focus all energies on protecting self from these!) and “Safe, Would Not Hurt Me” (so tired from the first category, no energy to protect self on any measure around them) — now I can spend that time and energy centering myself and my needs, thinking about what I really need to protect (from anybody), what I’m ok with people knowing — and even focusing that energy on becoming ok with those facts of my lives, myself…

But the eternal vulnerability can wear on me. Disclosing something one time means being vulnerable forever — the moment of sharing, the interaction may pass, but the knowledge can be used against me at any time. It can come up at any point in the future. Once I make the decision (not that there’s always a choice) to disclose something, I let it go forever — the knowledge is free in the hands of the people around me, and I can never take it back.

I could go on a decade-long effort to refocus on invisibility, on passing, on keeping secret — I could purge my social circle, present myself as totally normal and hide anything that might indicate otherwise — and all it takes is one person, saying one thing, to crumble that carefully-built structure in an instant.

The first time anybody knew I was sick — oh hell, people knew before I even got diagnosed at 12 years old! — that shell was cracked, and I never know if, when, it’s going to shatter, burst wide open. In fact, I can probably count on it happening, at some point in my life. Probably the least opportune point when it will cause the most damage, right?

No matter how careful I am, I occupy a precarious position.

It’s hard to accept that there is always going to be a wall there when I make personal connections with the currently nondisabled. Their knowledge can only go so far. They can be friendly and supportive, but they come from a fundamentally different place. And that means that at some point, they will do something potentially hurtful. Not understanding that it is potentially hurtful. Because they can only go on their own experience.

So even with people who might be friends — or at least friendly acquaintances — I have to have that wall. That knowledge of potential hurt. With all the weight it carries.

It’s a price I accept — rather than the price I try to deny, and end up experiencing anyway.

We need look no further than the story of this sixteen-year-old young man, who is facing a flurry of attention after filing a lawsuit against his mother for hacking his Facebook account. He also requested a no-contact order on her.

It appears that the mother, at best, took advantage of her son having failed to log out and clear all cookies and personal history from his computer every time he leaves it for half a moment, and at best, straight-up hacked his account — read some things she didn’t like, and responded by posting things all over his page in an attempt to embarrass him and then going to the length of changing his passwords on his Facebook account and his email so that he couldn’t do any damage control after he found out about it.

She thinks that these actions constitute a “conversation” with her son.

The son lives with his grandmother. Someone, somewhere (I can’t find an attribution) claims that he and his mother had a “great relationship,” a claim that sounds suspiciously like the refrain that commonly comes from assaulters and abusers, from cheaters and absent parents and partners. They truly have no idea that something is deeply, thoroughly wrong with the relationship, and the signs of the second person in it — the object — protesting against that wrongness are lost on them.

Like, you know, the fact that her son does not live with her and prefers not to have any contact with her at all.

The mother is living it up in the face of all this attention. She gets to assert her ownership of her near-adult son and know that a great many will rally to her defense in response.

New plans on fighting the charges, as she believes she was fully within her legal rights as a parent to monitor her son’s online behavior.

“Oh yeah, I’m going to fight it. If I have to go even higher up, I’m going to. I’m not gonna let this rest. I think this could be a precedent-setting moment for parents,” she told KATV-TV. [source]

Denise New says she plans to fight the charges saying if the suit is successful it will be “open season” on all vigilant parents who seek to keep their children in line. [source]

“You’re within your legal rights to monitor your child and to have a conversation with your child on Facebook whether it’s his account, or your account or whoever’s account.” [source]

“If I’m found guilty on this it is going to be open season” on parents, New said Wednesday.

“You’re within your legal rights to monitor your child and to have a conversation with your child on Facebook whether it’s his account, or your account or whoever’s account,” she told KATV. [source]

“The things he was posting in Facebook would make any decent parent’s eyes pop out and his jaw drop,” Denise New said. “He had been warned before about things he had been posting.” [source]

Denise New acknowledged changing both passwords to keep her son from getting access to his Facebook page. She denied hacking into the account.

“He left it logged in on my computer,” she said. “It’s not like I stole his laptop.” [source]

Readers will note a common refrain in many of the non-strictly-news sources above (and found here): “What ever happened to de-friending?” As though this is a matter of a son allowing his mother to have viewing access to his page through her own account as a friend. The son may never have allowed his mother to have an inkling that he had a Facebook account: she still forced her way into it. Not in view of it, in control of it. This doesn’t have anyfuckingthing to do with who you friend and who you don’t.

Of course, most sites focus on the potential implications for parents’ rights, and there’s a good reason for that: our society cannot deal with the idea of children as full human beings with ownership of their own selves. It is firmly entrenched in our social consciousness that children are objects, possessions, things lacking full personhood, desire, decisionmaking ability, agency.

Much like women used to be (and are still, to some extent) considered, hm? Objects for the benefit of the full beings who own them. Women would be passed along from fathers to husbands, traded for physical and monetary property, no distinction between the two things in that transaction. Not identically, but similarly, children are considered objects owned by their parents much the same as wives were objects owned by their husbands. (I expect that mothers reading will feel this a little more intuitively than fathers might — knowing that oneself might be on the object end of that transaction can produce a different reaction, sometimes.)

It is interesting that the immediate reaction to this story on the part of adults, especially adults who have children, is to consider the parent’s plight in this story, completely neglecting the concerns of the child. And it reminds me how (feminist) abled women immediately rush to think about the plight of the caretaker in any story of caretaker abuse of PWD, completely neglecting the concerns of the person being given the care, as though they don’t even exist. As though they are objects: things that cannot be affected themselves, that can only affect the full persons in their non-lives.

It is telling, really, who we consider to be persons worthy of consideration, whose problems we consider to be important and worth solving — and who we consider to be persons completely ignorable, whose problems aren’t worth consideration and don’t particularly need any attention, much less any attempt at solving. (In fact, the solution to their problems might interfere with the solutions to the important problems — so they should be crushed if possible.)

This is what we are. People read this story of obvious, clear violation of boundaries, and think immediately on their own right to violate others’ boundaries: or else they resort immediately to blaming the victim for this clear violation of their own boundaries. The reaction more comment from non-parent adults.

How ridiculous, right? That a boy would assert his right to his own fucking life without his abuser’s interference. Especially when this parent doesn’t even have any fucking custodial rights! And we still rush to her defense. How poisoned are we?

For the purposes of this post, I would like to remind everyone that the range of disability includes people who are mentally ill, paralyzed, Blind, Deaf, permanently injured, autistic, physically disfigured, with compromised immune systems or disordered speech or chronic pain or cognitive impairments, and many, many others. Disabilities may be fatal or not, may be degenerative or not, may be apparent or not. Being painful, fatal, stigmatized, or poorly understood does not mean that life is not worth living, and I will not tolerate any attempts to enforce a hierarchy of disability; there is no category of Especially Bad Disability that destroys any chance of worthy life.

Blog for Choice Day 2010

Have you ever participated in the stigmatizing of pregnncy, childbirth and childrearing when the parent, child, or both have, or could have or obtain, disabilities?

Have you ever participated in the cultural narratives that say:

• Older women should not have children because their children are more likely to have a disability
• Women with disabilities should avoid having children because their children might also have a disability, and it would be wrong, unjust and cruel to give birth to a child that is not in perfect health
• Women with disabilities should avoid having children because only temporarily-abled women can properly parent a child, or being a mother with a disability would somehow deprive the child of necessary experiences or put a burden on the child
• Women with disabilities should avoid having children because they are more likely to be poor and need public assistance, and their children would also be more likely to use public assistance in the future, resulting in a drain on temporarily-abled taxpayers
• Women with disabilities would be selfish to have children, and to do so would contribute to environmental destruction, economic decline, and even degradation of the human species, and they and their children would be less valuable members of society because of their lack of perfect health
• It would be a tragedy to have a disabled child, disabled children are less desirable than temporarily-abled children
• Life with a disability is inherently worse than life without one; life without a disability is the baseline by which all life should be measured, so of course to have a disability would be a negative and would make a person’s life worse
• Disabled children are a burden on their temporarily abled parents, more so than any other child would be, and this is because of the child’s disability rather than because of the lack of support and affirmation throughout all levels of society for PWD and their loved ones
• Of course it is more desirable for a child to be perfectly healthy than to have some sort of medical imperfection, and those medical imperfections are a big stress and hassle on the temporarily abled people around the child, and there is something wrong with the child for failing to meet an impossible standard of perfection
• Health and ability are objective concepts and our current cultural wisdom on them are completely right and the medical industry that puts them forth is infallible; our ideas about health and ability are the only right way to look at things and can be universally applied
• To violate those cultural ideas means that you are inherently flawed
• The answer to all of this is to go to excessive lengths to avoid ever having, or being around someone who has, health problems, up to and including letting the least healthy die off or be terminated before they can live at all

You know what? I’ll bet you’ve all done it. Even the most radical disability activist has participated in some of these cultural tropes at some point in their lives.

But I’ll bet the vast majority of people “blogging for choice” would never think of disability as related to “choice” issues, and if they did, it would be for the right of temporarily-abled higher-class white Western women to terminate a pregnancy that has a more-than-minute chance of resulting in a less-than-perfectly-healthy child.

This is why the “choice” framework fails. It fails all of us, but it particularly fails those of us who fail to meet society’s idea of the optimal person: the pale, thin, beautiful, and financially comfortable picture of perfect health. The person who never relies on others (no!), is “self-sufficient,” and isn’t likely to end up a burden on the important people.

The rest of us can “choose” to stop existing.

Do you really trust women? Or are you perfectly willing to override their choices if you feel they threaten your comfortable position in society?

And you expect me to think you’re any better for my rights and needs than pro-lifers, why?

(Cross-posted at FWD/Forward.)

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.)

quadmoniker at PostBourgie, “Hurting for Female Directors” (emphasis mine):

His answer was that he simply hired the best writers, whether that led to any sort of fair representation from women or non-whites. What he didn’t realize, of course, was that his definition of ”best” probably excluded, intentionally or not, all but white males.

He added that he didn’t want to sit around and count quotas because he felt that was condescending. But it’s not just about parity; making sure his organization was more representative was about realizing there are varied points of view that his history as a white male might prevent him from immediately understanding. When you’re talking about writers good enough to get an assignment from Harper’s, there isn’t just one best. After a certain level of quality, distinctions from one writer to another become a matter of taste, and this particular editor was showing his bias toward white males. Pulling in other perspectives would enrich Harper’s voice.

[...] I’m not going to say that [The Hurt Locker's different emphases] was due to Bigelow’s special woman-sense or anything, because we don’t know why she was able to make it so good. That’s kind of the point. The excellence of the movie speaks to Dargis’s point and the problem with Harper’s at once. If we leave out half the population from movie-making, we’re leaving out half the perspectives that might be able to bring something new to the table. The major studios would be better off if they brought it, because I’d love to see more movies like The Hurt Locker.

The last point in particular makes a lot of sense to me: some people would assume that, well, when it comes to imagining new things and taking things from new perspectives, white men can do it too — that white men are capable of providing any perspective or creative direction that humanity could possibly provide — and therefore there is no need to necessarily seek out a diverse creative class, because there is nothing a Muslimah or gay Filipino could bring that a white male couldn’t, and it’s an insult to white men to imply that they do not hold the entire world in their mind’s hands.

But they don’t, because no human being is capable of tapping into the entire universe of perspectives available. We all see the world through unique, specialized lenses that were formed and shaped by our experiences as the person we are. The place we grew up in, the family that raised us, the way the world treated us, the distinct qualities of the culture we are part of, the choices we make as adults as far as the direction of our lives, our careers, our relationships, our hobbies and passions. All of these things change the shape of our particular lens in their own unique way, and we all have a unique combination of these things which forms our own unique perspective of the world.

But those lenses have limits, they necessarily have limits, and we do not always even know what those limits are. Those factors we share with others will create a lens shape quite similar to their own, and when we are surrounded by like people we might often begin to believe that our shared lens is not a matter of our shared experience, but rather a matter of universality.

This is what leads us to believe that there is nothing the white male cannot achieve, cannot bring to the creative table: his experience is shared by so many, and especially shared by so many in power, that he, and we, might begin to believe that it is not a particularly-shaped lens anymore, but rather no lens at all.  And when we believe that he has no lens at all, what benefit could there be to paying attention and inviting participation from people who do have differently-shaped lenses? No creative benefit, certainly, because there is no difference between what those different perspectives see and what the white male could see if he felt like trying. Because he can see all.

And so we wind up where we are: it is an insult to creativity itself to suggest that it is worthwhile to drink in a diversity of perspective, and it becomes not a matter of improving the depth and quality of creative offerings, but rather a matter of personal benefit to the creators.

And we can see where a white male might prickle when confronted with a person who appears to be suggesting that he does not deserve to sit on his side of the conference table, that someone else who can do no more than he could do has some greater worthiness of sitting where he does based on factors outside hir creative potential, and that he should actually willingly give up his seat to make room for hir. It becomes a personal affront, rather than a pressure to improve the greater craft. And, in fact, might become an affront to the quality and depth of his craft, to specifically invite participation from people who bring with them one perspective, but only one — while he brings all.

So he will invite only those different people whom he favors for personal benefit. And he will continue to scoff at the suggestion that diversity is wealth.

How it might be changed? I don’t know. But one place to start is to make everyone aware that they can only see the world through their own personal lens, and that their lens has borders, limits, boundaries. That no one can approach the world without a lens, and that every lens is malleable, not set, not infinite, but formed in the first place by one’s personal experiences.

It’s going to take some time.

(Optional background: my previous post and this comment to it.)

Yeah. I can be. I get angry.

I never used to. Ask my best friend. He’ll tell you. I was an appeaser. I was someone who was always sweet, always accommodating, always ready to be the mediator in a conflict, trying to reason with both sides, trying to placate the opposite party, making sure I never, ever said anything rudely, shortly, bruskly, or in any way that might put off the other party.

I still do that sometimes. When I have the time, energy and inclination.

But I don’t have time or energy anymore. Period. I have twenty things to do every day and only enough spoons for four of them. And that’s the basics: shower, prepare food, work (oh God, work), feed the cats, pay the bills, get ready for bed.

I participate in this community to varying extents at different times, depending on my time, energy and inclination. Sometimes I spend “spoons” here when I should be spending them watching hockey with my husband, or getting that extra half hour of sleep so I won’t fall over at work tomorrow. Sometimes I just have spare time and this is where I choose to spend it.

I feel like I can learn something here and also teach something here. I can do something. Make something happen. Be effective. Even if I only affect three people. Three is more than I would affect watching daytime court TV shows.

I don’t have much to spend here. I never do. What I want to be able to do is spend time researching, considering, organizing, compiling, refining, presenting. I want to be able to do more neutral-tone, resourced, annotated type posts.

I want to be able to profile the CCA. To explain what its goals are and why it is needed. To explain what is happening with it (currently, it’s dead because the current session of Congress is almost over) and what we can do to move it forward (right now, the first thing we can do is raise awareness of it so that more people can push for it because it will continue to go nowhere if the only grassroots support it has is from the likes of ADAPT).

Right now? I do not have the energy for that. Or the time. No matter how much inclination I have.

In the meantime, I watch the way things go in this community that I am a part of. And sometimes, the way things go makes me angry, as I watch it and it continues, over and over, to follow the same patterns, even as people raise their voice and point out the problems — and sometimes get shouted down for it — even as people demonstrate how it might go differently — and are summarily ignored by the people who hold the power in this community — and basically consigned to their corner, where they will continue to do the hard work they are dedicated to (and sometimes burn out because there is so much to be done and so little support) while nobody knows about it, because of a combination of a) the people with the power/audience don’t see fit to tell anyone or direct anyone their way or hell, maybe pick up and help out with some of that workload themselves? and b) the audience themselves don’t have the inclination to seek out the cornered-folks themselves, if they even have the inkling that they exist (because nobody is omniscient).

And you know what? That does make me angry.

So maybe I profile the CCA. And people who care about disability already learn about it (if they didn’t already know). And, because it isn’t “a women’s issue,” or because it doesn’t affect them directly so they don’t quite feel the same urgency, or because the culture is such that non-abled priorities are devalued so it ends up so far down the list of things to get to that it will never get gotten-to … feminist bloggers don’t say anything about it.

And … ?

So I get angry, and I wish that those bigger feminist bloggers would pick up on it, because it is a women’s issue, it does affect a great many people quite seriously, and it is something that they could make a serious difference with if they were to pick up on it, because it quite desparately needs a wider base of support.

And maybe I go the plaintive, appeasing, email-or-post-with-a-”Please-will-you-address-this?”-plea. Because that would be less offensive. (More effective? I don’t think so. I don’t think either way is more effective than the other, in the end: maybe you get people angry at you when you show anger with them, but maybe you’re also quite likely to be completely overlooked if you don’t get someone’s attention — because the whole problem is that they aren’t paying attention to you as you’re doing things the “right” way!)

Or maybe, it is an injustice that this issue ends up ignored by abled-feminist leaders, and it is legitimate to be angry about that, and it is legitimate to call them out on it.

Maybe, they didn’t know about it. That’s just how life goes. But maybe, the reason they don’t know about it is because of the systemic devaluation of non-dominant priorities. Maybe, the reason they don’t know about it is because they are continuing to — sometimes unconsciously, sometimes consciously — value their concerns over the concerns of people not like them. And passing over articles that detail issues that profoundly affect women because they don’t affect women like them. Don’t kid yourself and say that’s not why: they didn’t sit there and think to themselves while curling their moustaches, “Ha ha! These women are not like me, so they can go jump in a river for all I care! Stupak is more important!” But they just didn’t see the relevance — because our culture devalues disabled concerns!

That is what I am trying to change!

And one way to do that is to point out to people when they make those value judgments! Even in error! Even unintentionally! Because intentional or not, women are still being forced into institutions because of it!

Can I get a little angry about that sometimes?

Don’t you think it points out the root problem fairly effectively to point out that subconscious devaluation rather than just profiling the legislation at issue? Isn’t that also a valid problem to point out?

In general: when I’m short on time and energy, I’m a lot likelier to be short in response, too. I’m a lot likelier to just spit out my point rather than trying to go back, pad things with explanations of why and disclaimers about how I know you aren’t a Bad Person and reaching out my hand to hold yours through the process. Sometimes I feel like doing that. Sometimes that’s a valuable thing to do.

But it’s not always the most effective thing to do. And either way, it’s not what should be required of someone — I am a woman with a disability, remember — before they can point out that someone’s stepped on their toes.

Sometimes I’m mean.

I wish I weren’t mean as often as I am. And sometimes I slip up.

But that doesn’t mean that it’s never acceptable, or effective, to be mean. That sometimes, being mean isn’t what is merited given the situation.

I will continue to engage with this community to the extent and in the manner that I choose. If you don’t like my style, that’s OK. Not every person is required to be compatible with every other person’s style of communication. There are other people doing similar work without my sometimes-rude bent on it. I encourage you to seek them out. You are entitled to engage to the extent and in the manner you choose.

But please do not try to attack the legitimacy of this style altogether. Because it is a valid style, a sometimes effective style, and a needed style. We need all sorts of people to make this movement work. We need all sorts of tactics. We need people who are willing to kick a few people in the ass. And we need people who are willing to hold hands and guide gently. And we need people who can explain the simple facts. And we need people who can pull those facts apart and figure out what they might mean.

We’ve all got different roles. This is mine. If you are not comfortable engaging with this style, OK. Engage elsewhere. But don’t tell me to stop engaging. Because I refuse, absolutely refuse to dial back on calling people out for doing shit that is ultimately harmful.

There are some very important tasks at hand, and I’m willing to do some of the work. The work that I can do. It might not be much work, or the most effective work, but it’s what I can do, and it’s still something to help get these very important things done.

Don’t downplay the importance of that. Don’t even.

Feministe. Feministing. Shakesville. Bitch. Kate Harding, Jezebel and Broadsheet.

Every big feminist-inclined blogger who has shown such urgency and import about Stupak and abortion-within-healthcare-reform. Every feminist blogger who has used their standing, their wide audience, to urge people to do something to change this bad thing that is going to happen to people like us.

You’ve been there for all the women with functional reproductive capacity.

Where have you been for all the women stuck in nursing homes and institutions and all the women who are managing to live independently who will have their services taken back from them and be forced to move into nursing homes and modern institutions?

Because this is just as urgent an issue. And just as timely: it is being considered in the current health-care reform package. This one. This same one with Stupak (or analog). This same one you are fighting to improve for the sake of women.

Where have you been for years on the Community Choice Act?

We are talking about policy that is cheaper than subsidizing the cost of placing someone in a modern institution (nursing home, “senior living,” “care home” and the like), that allows women to have independence, autonomy, and self-determination. We are talking about a policy that gives women control over their bodies and the direction of their lives.

Just like access to affordable abortion.

We are talking about policy that lets disabled and elderly people live out in their own communities, with home services that allow them to get by on their own.

We are talking about fighting modern institutionalization, which is alive and well and still just as horrific as the stories from those old abandoned state buildings you’ve all heard about.

We are talking about saving people from being corralled, shepherded, and treated like livestock. Saving people from abusive situations, from sexual assault, from neglect and starvation.

This affects women.

Why aren’t you there with them?

Why don’t I see this addressed with nearly the same frequency or urgency? Nearly the same sense of importance, immediacy?

Because it is quite immediate to quite a lot of people. People who do not have the power you hold in our political system. (Oh, you may hold less than your male-identified young, abled, financially-privileged counterparts. But you still hold a great amount of power compared to many who are not in such a position.) People who need allies to fight with them. Let me spell that for you: N-E-E-D. They cannot see progress for as long as their younger, more abled peers continue to ignore them.

This is your chance to do something that makes an enormous difference.

If you aren’t familiar with this issue, I suggest you make yourself familiar with it. Learn about ADAPT. Read about the CCA and the arguments for it. Look into your local Independent Living center and see about opportunities for volunteering. Whether it’s high-minded political activism or low-status work doing the caring and cleaning and cooking.

Read up about disability activism, and read up about today’s institutions. Force yourself to confront reality.

And, maybe, use that platform you’ve got to share your new knowledge with others.

We need you.

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.)