three rivers fog

To fucking up.

I do it on a regular basis.

I’ve said and done things that hurt friends, hurt enemies, hurt people I don’t even know. And no matter who it is, it matters.

I just want to acknowledge that yes, I have heard your criticisms. And yes, people have made a lot of important points in response to my mistakes. And yes, I am trying my best to listen, to take it to heart, and incorporate these perspectives into my work and interactions going forward.

I won’t always do it perfectly, but dammit. I want to try.

These things sit on my shoulders for a long time. I don’t want to keep doing the same fucked-up things over and over again. If I have to do them at all, I’d at least like to use them as a kick to my own ass to actively improve my approach to writing and conversing and criticizing and playing and living.

I appreciate it that people feel comfortable enough, and see value in, raising objections or even just offering refinements. It makes our community more vibrant and our work more just.

I’ll keep trying to be better and I hope you’ll keep working with me.

by amandaw on Sunday, March 7, 2010 at 3:21 pm No Comments
Tags : community, essential concepts, i thought you were supposed to be my ally, justice, metablogging, personal, relationships, speak up, work

A Saturday sketch

I noticed something was wrong in the earliest hours of the morning, when my husband had disappeared from bed but I did not hear anything going on in the bathroom and could not see him anywhere.

Around 8, he got up to go to the bathroom and I lifted myself out of bed to use it after him. When he emerged, he was very clearly not well and said, in a seriously distressed tone, “I just had the most awful night” and stumbled around me back to bed.

It’s not emotional, he clarified as he curled up awkwardly on his side of the mattress, it’s just physical. He had problems feeling seriously sick to his stomach, which never culminated in anything, just churned on and on without relief, and had serious sharp pains in several places — shoulder, lower back, knees — and a generalized all-over ache that left him feeling miserable, unable to find a single comfortable (nay, just non-miserable) position no matter where he stood, sat or lay.

“This is how I imagine you feel every day,” he moaned, as he tossed his body into a different awkward position in an attempt to find some relief.

He needed the still, quiet, restful sleep so badly, but hurt too much to stay lying in place in bed for more than a few moments, and the pain was too distracting to be able to actually fall asleep — and precisely because of this, he was in no condition to be anywhere else but in bed sleeping. A familiar situation for me.

A few minutes later, already in his thirtieth position attempting to achieve some state of rest in bed, he pushed over to where I sat on my side of the bed and asked, “How do you do this every single day?”

Staring at my nightstand drawer, I smiled a bit and replied, “A lot of medicine. And you to help me.”

by amandaw on Saturday, February 20, 2010 at 9:55 pm 1 Comment
Tags : chronic illness, chronic pain, fibromyalgia, home, interlude, pain, pain management, personal, relationships, stories, treatment, welcome to my life

Enabling abuse in online communities: How many voices have been silenced?

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.

by amandaw on Monday, January 18, 2010 at 4:04 pm 18 Comments
Tags : abuse, assholes, community, control, feminism, fuck that, i thought you were supposed to be my ally, invisibility, justice, personal, power, problematic attitudes, scary, social justice, social treatment, speak up, stories

when I reach

I opened this window several hours ago in hopes of reflecting on the closing year. The best year of my life, the first year I’ve ever felt like it was my life — immediately following the year my life seemed to fall away from me.

I have not been able to form words, even to myself. I can feel the presence of something inside me, feel the need to pour out in words, feel the emotional composition of the space — but when I reach, I find nothing.

I wanted to explore contentment. I wanted to reflect on security, on legitimacy, on ownership. I wanted to look at what I’ve gained — what I’ve established.

But when I reach, I find nothing.

I can see the form of the space emerge. But I cannot access the contents.

I need to be in there, digging, shaping, sorting, building, smoothing. Processing.

But all I can do is know that space is there, and that I cannot be in it.

My own thoughts, emotions, and memories are hidden from me. Buried away. For my protection.

One day, some time ago, I needed that. I needed to be able to bury the raw sensation of being. Bury it deep, undetectable. To keep it from being infringed.

But now that I am safe from what threatened me — now that I have cleared some space — now that I want to use what I’d saved –

I find nothing.

by amandaw on Thursday, December 31, 2009 at 7:11 pm No Comments
Tags : fragments, identity, inner reflections, personal

Why am I so damn mean?

(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.

by amandaw on Monday, December 21, 2009 at 7:47 pm 10 Comments
Tags : brain fog warning, color me unsurprised, community, control, culture, disability, feminism, i thought you were supposed to be my ally, justice, metablogging, personal, power, privilege-check, problematic attitudes, rants, roles, speak up

I have the right.

I am under no obligation to interact with any given individual. Not under any particular circumstances, not to any particular degree and not in any particular manner.

It will not advance my activism to maintain the public appearance of good relations with a person who causes me nothing but pain, a person who behaves abusively toward me or others, a person who causes harm to myself or others. It does not advance a cause or better the situation of any group of people. All it does is prevent the rest of the community from feeling discomfort at being aware of conflict. But that conflict will exist no matter what: the only difference will be to my personal health. And no, I am not willing to sacrifice my personal health for others’ minor discomfort with being made aware of reality.

I am not obligated to articulate why I am avoiding this persoon or that one. I am not obligated to prove to you that my decision is justified. My reasons are my own, and they are valid. I do not need anyone else’s seal of approval to continue protecting my personal health.

Situations are complicated. And not all of the situation happens in the public eye. And sometimes, I am keeping it that way — keeping things private — for the health of the community. Sometimes, my avoidance of a person is attributable to my own personal background and triggers and issues, things that I have the right to keep to my own damn self. Sometimes, airing a personal conflict can create wider conflict with other people I care about over something that does not actually directly affect them. And I have the right to keep that to myself.

Sometimes, the conflict is a result of something that is relevant to the wider community. Something that is subject to political analysis or something that affects the concerns of the particular community. Sometimes, this conflict arises because I can see another person doing harmful things, behaving in harmful ways, and hurting other community members in the process. And I still have the right to keep that conflict to myself. I have the right to determine for my own damn self whether the actions I am capable of taking would have any positive result — or whether they might have adverse effect on my community, and how much and what kind — or whether they might have adverse effect on me, and how much and what kind — and decide for my own damn self where the balance falls and what to do as a result.

Sometimes, that means speaking up. It means rocking the boat. It means dealing with the unhappiness that results. And sometimes, it means staying silent. Keeping it to myself. And dealing privately with the pain that comes with this or that person’s continued presence and respect within the community.

Sometimes, I am avoiding someone because they whisk me back to painful times, through no fault of their own — simply due to mannerisms or patterns of behaviors which are not inherently negative, but which are just associated for me personally with negative things.

Sometimes, I am avoiding someone because they are downright abusers, even if it is not readily apparent to everyone else in the community. Abusers, you see, don’t always abuse everybody. It is quite common for abusers to be respected and revered within their wider community, considered valuable and indispensible, doing good things for other people — at the same time as they abuse one or more other people, behind closed doors, or in such a way as to slide under the radar of peers and neighbors. And their good deeds do not negate their bad ones. And I have the right to protect myself from further victimization at the hands of my own community as they come to the defense of this person they see as an upstanding and respected member being attacked without provocation (that they were aware of).

I have the right to tend to my own safety, and the safety of others who might be victims of similar abuse, or feeling similar peripheral effects of past abuse.

I have that right. No person can take that from me. Not for any reason.

This applies to people in my workplace. This applies to people in my blogging community (and yes, there are some). This applies to people in my apartment complex. This applies to people in my social circle. It applies any damn place I go. And I have just as much right to go there as the other person does.

If you respect me as a person, you must respect that right. You can keep on liking and interacting with any person you like. But realize that I have the right to abstain from interaction with those same persons. And you don’t get to question why. No matter how much you like them, it does not change the harm that comes when I force myself to pretend that nothing is wrong for the sake of other people’s illusions of harmony.

by amandaw on Sunday, December 13, 2009 at 1:47 pm 9 Comments
Tags : abuse, community, control, culture, feminism, fragments, fuck that, pain, personal, power, rants, shaming, social treatment

Inertia

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

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

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

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

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

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

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

***

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

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

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

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

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

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

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

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

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

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

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

by amandaw on Monday, December 7, 2009 at 8:01 pm 2 Comments
Tags : chronic illness, disability, fibromyalgia, inner reflections, pain, personal, this all sounds awfully familiar, welcome to my life, work

Names

I’ve had a handful of names throughout my life.

I was born “The [Mom's Maiden Name] Girl.” My mother had not yet picked out a first name for me. She was living in a hole-in-the-wall shack in a poorer town in agricultural central California — it was where she ended up after my father kicked her out upon discovering her pregnancy. Get an abortion or hit the road, he said. I knew this as a child, but it wasn’t until I grew older that my mother also informed me that he was threatening to beat her, to punch and stomp on her stomach to forcibly terminate the pregnancy. He tried to send her out with no belongings in a scrap car — which was to get her from her then-home on the northern border of Oregon to her adult sons’ home in central California. That’s over 900 miles. She was 43 years old and not in the best of health. My oldest brother — something of a giant — had to gather some friends to physically threaten my father for him to make sure that she was able to make the trip safely.

I’ve never had a moment’s contact with him. My mother claims that when I was around six years old, he called her, having “dropped by” and wanted to take me out for some ice cream with his new girlfriend (with whom he had been involved during the short months my mother was married to him). Fearing for my safe return, she refused. And never heard from him again.

During my first months, my adult sister lived with us — she has told me stories of having to brush cockroaches off of me while I slept. And it wouldn’t be until I entered adolescence that my mother and I settled down in a permanent home: before that, there was not one residence I was able to stay for more than a single year’s time; we hopped around looking for the lowest rents, and spent time living in spare rooms in each of my adult brothers’ homes (three times with one, once with the other).

When I was five years old, my mother married a long-time family friend. When she did so, he legally adopted me, claiming to be my father and being added to my birth certificate as such — whether my mother just went along with this or actively sought it for reasons of future security, I don’t know. Regardless, my name at the time changed from [Mom's Maiden Name] to [This Man's Name].

A little less than a year later, after struggling with him over finances — he wanted her to continue working to support his retirement, with no support for either her nor I — she divorced him. And there, a problem cropped up: in order to get my name changed back to my birth name, she would have to go to court to prove that he was not, in fact, my biological father, and have him removed from my birth certificate. As a newly single mother, she did not have the resources to take on that task. So, even after the divorce was finalized, I remained [This Man's Name] — and she kept that name as well in the interests of having the same name as her daughter.

And that name remained mine for the rest of my childhood, adolescence and early adult life. I hated it. I hated the sound of it, I hated the man it came from, I hated the way he had treated her, I hated the way we were stuck carrying his family name despite having no ties to this family whatsoever.

Ever since I can remember, I have been very eager to get rid of that name.

And ever since I remember, I have been wholly uninterested in weddings and traditional family life. I had no interest in boys or girls as a teenager. I never dreamed about “my day,” about dresses and flowers and music, about honeymoons and housewifery.

Part of that, especially as I grew older, was that I had a distinct sense of my undesirability. I wasn’t interested in anyone else because I thought no one else would be interested in me. As I grew more aware of my health and struggled with my increasing limitations, I never even entertained the idea that anyone could ever be interested in me — not to kiss me, not to hold my hand while we walked through the mall, not to cuddle, not to call me “girlfriend” or “go steady,” not to live with me, not to propose to me and certainly not to legally commit to be stuck with me for the rest of their life. Who the hell would want that? I was a burden; my health was growing worse; they would have to help take care of me, and I wouldn’t be able to contribute to the household enough to count as an equal. So obviously, I wasn’t on the market. It never even got as far as whether or not I wanted to be: it was simply a matter-of-fact acknowledgement of a reality that would never change, and thus there was no point wasting energy trying to change it.

All this is to say that I wasn’t dreaming of changing my name as part and parcel of the supposedly-universal little girl’s dreams of wearing white and being pampered and fawned over and having pretty pictures taken in rolling green fields. I never had those dreams. I just really fucking hated that name.

So before changing my name as part of an adult relationship ever became a possibility, I had three names to contend with. My father’s name (which I’ve never officially carried), my mother’s maiden name, and that other man’s name.

And not a single one of them was a name I wanted any part of.

My father’s name? Sounded pretty cool phonetically, but it was the name of a man who threatened to beat my mother, cheated on her pretty openly during their short relationship, had some pretty serious class bigotry going on, and was by all accounts — including those of his other children, the half-siblings who wanted nothing to do with me — a complete asshole. Yes: there’s a name I want to adopt!

My siblings (on my mother’s side) actually shared a completely different name — they were from a different father — my mother’s severely abusive first husband who thankfully died in a motorcycle crash, and every single member of my family is convinced it was for the better.

And then there’s my mother’s maiden name. The name shared by my aunt and uncle and family up in Oregon, the name I was born with, the name I went by for my first five years of life.

It doesn’t matter. I don’t fucking want it.

I want nothing to do with any of those names. I grew up in a severely emotionally controlling and manipulative family and experienced abuse to the point that I am just being introduced to the idea that I may have PTSD by my counselor. (I protested, and she said “OK, well, we don’t have to put a name to it, but…”) I have pretty bad dissociative issues I am only just beginning to explore; I escaped with moderate to severe anxiety disorder and panic attacks that don’t qualify as panic disorder only because instead of being random, they are triggered by contact with my family. I fit every other qualification.

I was stuck at home with a mother who afforded me no space to develop an individual self, unable to make it on my own away from her because of my disability. I couldn’t work, couldn’t afford rent, couldn’t live independently. I pushed myself to return to college earlier than I should have — after I dropped out the first time and spent months housebound — cutting short my recovery time, just to get away from her. I lived for a year on Social Security disability (after I was approved), $7500 in needs-based college grants and several thousand more in student loans before everything started to run out — money, my ability to continue school and maintain grades high enough in a busy enough schedule to qualify for further student aid — and I couldn’t stay out on my own anymore.

And then I spent a very painful and traumatic six months stuck in close contact with an abusive mother who was keenly aware that she was losing her grip on me and escalated the abuse accordingly.

And then? I was able to move 2500 miles the hell away from all that shit to live with… a man. Whom I married. And whose name I took.

I was able to move to a place I wanted to move to, to live with this amazing person I wanted to live with, who loved me dearly, who was respectful and affectionate and treated me like a whole person, a person of my own whom he just so happened to be enamored with, whose family was warm and welcoming and accepting and easy to be around…

I was able to choose where I wanted to be, who I wanted to be there with, who I wanted to be, what sort of life I wanted to live…

I chose the family I wanted to be a part of. I built the life I wanted to live. It’s a life I just so happen to love deeply, a life that has given me so much more opportunity than I ever had on the other side of this country, thanks to the person I chose to build it with.

That person? Is a man.

I took his name.

I don’t think that’s a capitulation to patriarchy. I don’t think that’s a compromise of my feminism. I think that is a demonstration of my feminism.

I have a name now. It is mine.

by amandaw on Sunday, November 1, 2009 at 9:40 pm 11 Comments
Tags : abuse, chronic illness, class, control, disability, erasing, family, feminism, home, identity, pain, personal, self-determination, stories, welcome to my life

Scenes from the office

the scene: mid-morning on a wednesday. the north end of the ground floor of our building. i sit at my open-cubicle desk next to the scan/print station, barcoding applications. my coworker stands at the station, waiting for a fax to come through before she can use the copy machine.

both are silent. the sky is darkly overcast and the climate system whirrs loudly.

after several moments, she declares: “i wish…”

pause.

“i wish i could use the system.”

i look up.

at the moment, our intranet is down. i am assuming she means “i wish i could do my work.” but she continues.

“i wish i could get something. everybody seems to get something out of it. when we’re just trying to get by on our own, you know. they get something for free. i wish i could get something.”

and now i know what she’s talking about. i take a breath and try to maintain a conversational tone.

“i actually grew up on welfare. and it’s pretty hard. there’s so much you have to keep up with. it’s much better when you can make it on your own and don’t need that help.”

pause.

“when i was little, we actually got our food from food banks. you know, stale cheese and cans of evaporated milk, that was all we had. it was more trouble. i like it much better when i can do things for myself and don’t have to rely on that stuff. struggling with all that. it’s not easy at all.”

silence.

her copies are finished and she returns to her desk. i go back to my applications.

***

edited to add: if you want more on the things poor people are put through to get a few crumbs worth of help, read this old post from kactus, a poor single disabled mother whose presence on the internet I miss very much. um… in fact (looking at my comment there), it looks like it was but a few days before I started this blog!

by amandaw on Saturday, October 31, 2009 at 1:12 pm 4 Comments
Tags : class, home, justice, personal, poverty, privilege, stories, things people say, work

Yes, it DOES make a difference

(Cross-posted at FWD.)

I wrote this yesterday in an extreme fog and do not have the spoons to rework and polish it. Apologies for the brainspill, but these days it’s the only option I have.

***

For background, see Ouyang Dan’s post on the problematic aspects of the TV show House. Don’t tell me that people realize this is fictional. Don’t tell me that people know how to maintain that separation. Some do. Many don’t. And they’re everywhere. At the bottom of the totem pole… and in positions of power over the very people they are prejudiced against.

***

I was called back to work two weeks ago. I work at a government office that provides certain assistance programs. (Once you go to work for one government agency, you realize there are a whole lot more of them than you ever thought before.) I really don’t want to go into it any more specifically than that.

It’s been very rough on me. Last winter, work was physically draining. I basically have two whole hours every day that I am awake and not at work, preparing for work, or traveling to and from work, and semi-conscious. Not only am I so physically exhausted that I go to bed three hours after work ends, I am so physically exhausted that my brain just cannot be pushed any further. I have trouble comprehending the blogs and news sites I normally read; writing is usually out of the question. Of course, we won’t even talk about anything more physical than that — even preparing a boxed dinner for myself is too difficult. My apartment is even more a mess than usual, because I don’t have the energy to pick up the clothes that I shed as soon as I get the front door shut, the mail and personal items that trail after me from the couch to the bedroom…

Unfortunately, so far this year, it hasn’t just been physically draining. I’ve been dealing with a sudden onset of severe migraines, and not the type of migraines I’ve had since childhood and have an intimate knowledge of — these are more classic migraines, the nausea, the aura and vision distortion, the intense pain and pressure behind the eyes… The pain is not as overwhelming as my normal migraines (where a twitch of the toe makes me want to scream or cry or at least moan, but the movement and force of emitting any noise at all would hurt even worse, so I just curl up and remain frozen in misery), but the experience is just as miserable because it block’s my brain’s ability to function, even to process the smallest of information. I’ve been having trouble writing six-digit numbers on the top of each application. And normally I work faster than the worker next to me, but the past two weeks she’s been cranking out work three times faster than me.

It’s frustrating. I’ve been doing everything in my capacity to do to fight these headaches off. Everything. And no, I don’t want any helpful suggestions. But regardless, even with all the desperate measures I have been taking, they persist.

On top of it all, my endometriosis has decided to flare up at the same time. So I get double nausea, extreme abdominal cramps, persistent pelvic pain and other symptoms.

I’ve been in a lot of pain.

I take a lot of medications. For pain. I take medications that have no effect on people who do not have a specific type of pain disorder. And I take medications that people who are not in pain popularly take to get high. (I do not, for the record, take anything to get high myself.) And I put up with a lot of shit to continue taking one of few medications that works and that enables me to work.

(I guess I could give it up and therefore be putting up with less shit. But then I’d, you know, not be able to work. And for so long as I have the option to be able to work, I’m taking it. Because I may not even have that option forever. Situations change, bodies change, and bodies change how they react to medications over time. I’m doing what is necessary for myself and my family at this point in our lives.)

So, at work today.

I sit on the far side of the first floor of our building, along with all the other people working in my particular program, the people working on another program, and a couple stray general clerks across from all of us. The other program’s supervisor and one of the other program’s workers (OPS/OPW hereafter) were talking about a certain case, a woman who was being denied medication and needed help obtaining it. This was before lunch, it was a general talk in a work context, that is how to get the problem solved.

My husband and I went home for lunch, as we do regularly, given that we live less than five minutes from our workplace. It takes half the lunch period but it is worth the spoons because it makes the workday so much more bearable — two four-hour chunks rather than one long nine-hour one. We sit around, watch The People’s Court reruns, eat our lunch and laugh at the cats who get in silly, hyper, meddling moods around that time.

I returned from lunch, feeling a lot better having had a break from the fluorescent lighting and ambient noise of the HVAC system. And a few minutes after I got back, sitting next to the OPS scanning documents into the computer system, OPW wandered back over and began talking again about the client from before.

The medication? Oxycontin. Her doctor has been prescribing it to her for over 15 years.

And the conversation? Went like this. (As typed soon after in an email to my husband, as close as I could get to what they actually said, given how stunned and hurt I was while it was happening.)

OPW: do you watch house?
OPS: no not really
OPW: well he has some sort of leg injury, but he takes that other one, what is it? vicodin
OPS: uh huh
OPW: and they sent him to rehab, and he just had to find something to occupy his mind so he wouldn’t think about it
OPS: yeah they get addicted so easy
OPW: and now they put him on regular pain killers and he’s doing just fine
OPS: yeah a lot of the time tylenol or advil works just as well, people just want the high
OPW: exactly, and their doctors prescribe it to them and they hand it out to family members…

And the conversation went on like this for a couple minutes, with the two of them walking back and forth fetching printed documents, attending to the scanning etc.

I just… I’m not terribly private about my condition. I don’t bring it up, but if it’s relevant I talk about it. I do try to avoid telling my coworkers that I take narcotic medications (as opposed to just “medications”) but I have gone over it specifically with HR as it can be a security issue in some agencies.

I was sitting right there. OPW sits on the other side of me, and had to walk around me to get to where OPS was at the scanner. I was sitting right there.

They were talking about me.

They weren’t thinking of me, of course. They’d never make that connection. I’m young and thin and pretty enough. They know I work hard. Most of my office loves the hell out of me.

But if I had spoken up — rather than sitting there holding my breath trying not to cry — how would that opinion change? Would they start seeing me as lazy, as slacking off? Would they whisper about me every time I went to the water fountain for a drink? What was I taking? What was I doing with it? Would they start taking certain behaviors as symptomatic of addiction? If I passed too well one day, appearing to be just fine (to them; I am good at covering up my pain) — would they take that as evidence that I couldn’t actually be in pain and couldn’t really need that medication? And if I didn’t pass well one day — especially these days, when I’ve been stopped more than one time as someone remarks on how deathly pale I am and asks if I’m OK and tells me to take a break — would they see that resulting, not from my pain, but from the supposed addiction?

They were talking about me. They didn’t even know it. But I am that person on that medication. Pushing through the pain to keep working.

The difference is, Dr. House is a character.

I’m real.

And that woman. These were the attitudes of the people who were helping her resolve an issue. As much as I wish otherwise, workers do have some degree of latitude in deciding how they are going to approach a case, and can apply the law in different ways for different people, even if it appears pretty strict on paper.

I am that woman.

I have been there. I am there. I have to deal with unsympathetic figures in obtaining my treatment. Doctors, nurses, office staff, pharmacists, insurance reps, welfare reps, other reps. I have issues I have to call to have resolved. I have that person on the other line who’s promising me on the one hand to resolve the issue — but on the other hand …? How can I ever know?

I don’t know what was going on in this woman’s life. I don’t know if she’s dependent (there is a difference). I don’t know if she would be better off on another course of therapy. Or whether she’s tried all those other courses and they’ve given her awful side effects or they’re contraindicated given her particular condition or they’re unavailable to her due to income or access. I don’t know.

Maybe she’s abusing. Maybe she’s handing it out on the street corner.

Maybe she’s just like me. Just one person trying to power through this world as best she can. And this is the best way she’s found to do it.

by amandaw on Thursday, October 22, 2009 at 9:06 pm 4 Comments
Tags : ableism, abuse, chronic illness, chronic pain, disability, disclosure, erasing, fibromyalgia, invisibility, medications, myths and misconceptions, pain management, passing, personal, pop culture, privilege, problematic attitudes, shaming, social treatment, stereotypes, stories, things people say, work

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amandaw is a proud woman with a disability who doesn't have nearly enough time to deal with all this shit. Her space is dedicated to the examination of feminism, politics, the social model of disability, and the antics of her beloved cats. Things won't always make the most sense, so hang in there with me—but at least we'll have some pretty pictures to make up for it, ya?

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