three rivers fog

It’s official!

Back in fall ‘08, I was hired for my first-ever full-time job. It was seasonal — six months on, six months off — so I had time in between to rest and recover.

We’re nearing the close of my second season there, and finally today they called me in — tomorrow will mark the day I am officially a permanent employee. So now, there’s no break, no off-season.

But there is enough money to save up for a house downpayment, comfortably. I never thought I’d be able to put money aside while living under a reasonable budget, not one filled with irresponsible spending, but just reasonable, enough for us to eat well at home and go out to dinner once or twice a month and spend a little on entertainment. To be able to do that and not be frantic when it came time to pay the bills, and on top of that be putting away significant money toward a down payment? I can’t believe I’m doing it.

What it does mean is that I won’t be writing as often. Not that I write often as it is, but I’ve depended on having that off-season in the past. I won’t anymore. I’ll write what I can, when I can. I will continue to be active on Tumblr — I’m there pretty much every day. So that’s where you’ll find me. Elsewhere, I’ll be around when I can.

Thanks for all the support, everyone. I am happy today. :)

by amandaw on Tuesday, March 16, 2010 at 7:33 pm 2 Comments
Tags : disability, home, metablogging, personal, work

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

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

Hello, Feministing people.

I am really not well lately, very overwhelmed, so tired from work, stressful doctor appointments, other medical problems, that no, I don’t have much time to entertain discussion in every forum about this whole Feministing mess. Honestly, I wish I’d left well enough alone, because apparently all it does is open me up to more and right now? Sorry, don’t have the energy for it. If you aren’t happy with that, I don’t really care, because my health has already been compromised for this whole ordeal and I’m not going to make it worse to make internet commenters happy (… and wouldn’t even make them happy, anyway).

So. There you go.

Everyone else, maybe if I remember I’ll try to get some Friday  Catblogging up day after tomorrow. How about that?

Consider this an open thread for not serious and/or Feministing-related things. Will convert URLs to pictures if you want to post them. Hint: I love hedgehogs.

by amandaw on Wednesday, October 28, 2009 at 9:04 pm 6 Comments
Tags : metablogging

Have you heard?

There’s this new thing we’re doing. It’s a group blog called FWD (Feminists With Disabilities).

It’s pretty cool. Check it out.

But keep in mind, it’s our secret…. the kind of secret you immediately run out and tell everybody you know!

by amandaw on Sunday, October 11, 2009 at 10:26 pm 1 Comment
Tags : disability, feminism, metablogging, personal

Disclaimers

Things I’ve been meaning to say for some time.

1.

I am really bad about keeping up with my blog roll, followers, and reading. I am usually up to a week behind in Google Reader. I take a long time to finally get around to subscribing to the RSS feed on a blog I have been reading and loving for some time. And even then I take awhile to add it as a link. I also have the problem of figuring out how heavy a particular blog will be in content — in either length or frequency — and whether I will be able to handle adding it to my reading load.

Last year before I began my full-time job, I went through and culled every blog I could bear to part with (mostly the white liberal boy-blogger types, such as Washington Monthly) that aren’t bringing any news I don’t get from other sources, and aren’t giving me a perspective outside the mainstream dominant-group perspective (that is: Western, upper-middle class, white, cis, straight, abled, educated, etc.) This means I have a lot of trouble in that I keep coming across new blogs and writers I want to follow — but I honestly can’t get myself to stop reading the other people I still have!

There are people I come across, or people who link to me or follow me, and I take a long time to finally check out their sites, and if it appears to be a fairly heavy/frequent blog I usually put off adding it to my reading. :-\ But I am not ignoring anyone on purpose.

2.

I have a lot of trouble writing crisply and coherently on a consistent basis. Sometimes, the words flow without trouble. But most times, I am really struggling to translate thought to speech. A lot of this is what is often called “fibro fog” or brain fog. It’s a state of cognitive impairment common to fibromyalgia patients that makes it difficult to focus or concentrate, makes it hard to recall words, makes it hard to organize thoughts. It is so named because it feels like a thick, heavy fog settling in on your brain. It is hard to push through, hard to see where you are heading and how to get there.

I described it in my about page thusly:

I often have difficulty translating ideas into coherent sentences or pulling up a particular word important to conveying my meaning. My writing may be imprecise at times, like describing the buildings, greenery and landmarks surrounding my house without being able to describe the house itself. When I am angry it gets very bad — or maybe I get angry because it is so bad — and I can grow very frustrated at being unable to untangle the mess of ideas in my head and translate them to cohesive, understandable sentences.

Another aspect of it: I feel like my brain groups words together based on similarity in meaning — but files away all but one of those words. So I have trouble speaking precisely, using the right word for the meaning I am trying to convey, because I can only access the one word from that group, and no matter how hard I exert myself I just cannot pull up any of the other words. And the way my brain organizes these grouped “files” is haphazard, so I may not even be looking in the right group, so to speak — it may just be a group with a loose association to the group that contains the accurate word for whatever concept I am trying to express.

This gets very frustrating, to say the least.

There is another, much more personal reason I have for having trouble translating concepts-inside-the-mind into words-on-the-outside, having to do with my past and childhood, which I may elaborate on in the future. But that will have to be a long post, and I don’t have room for it here, at this time.

3.

I am a flake.

There is no way to get around it. It is who I am. I always have been, and always will be, a flake. No amount of effort, will power, meditation, medication, or otherwise will ever change it, because it is fundamentally what I am.

For a thousand different reasons, physical and mental and emotional, legitimate and il-, excusable and un-, understandable and not, I simply cannot hold true to every commitment. I am apt to forgetting things — anything — my cell phone when I go out, or to close the window in the kitchen when I turn on the air conditioner, or to read or respond to an email (no matter how important; ask both my husband and my best of friends, and they will inform you that they, too, have had it happen — often), to participate in an event or project I expressed interest in … even a very important doctor appointment for which I have been waiting for a long long time. Just last month I actually triple-booked myself at 2 p.m. on the 27th, for a doctor’s appointment, counseling and physical therapy.

I am a flake. It’s what I am. No matter how important something is, how much I care about it, how many check-points I set up to ensure I remember to do it. I am still prone to forget, delay, procrastinate, lose track of.

I’ve given up on changing it, because all it did was foster guilt and self-worth criticism and never actually changed the behavior itself. So what the fuck good was I doing — to myself or the other people who may be affected?

I am a flake. It is who I am. It will never change. And I’m not going to apologize for it any more.

That’s all for now.

by amandaw on Friday, September 25, 2009 at 1:21 pm 2 Comments
Tags : brain fog, chronic illness, disability, fibromyalgia, fragments, metablogging, personal, welcome to my life

And back!

Once you see this, we know the new system’s a go.

I haven’t messed with tech stuff in years now. I’m a little rusty. Fortunately, my statistic geek husband, for whom “playing with spreadsheets” is a primary hobby, helped get everything restored via remote MySQL access. I’m sure I would have been able to figure it out on my own… eventually… and with much worse stress and corresponding headaches and pain. So. Thanks, honey! ;)

We now return to our (ir)regularly scheduled blogging. Thanks for your patience.

by amandaw on Wednesday, September 2, 2009 at 9:08 pm 1 Comment
Tags : metablogging

Technical stuff

I am transferring both the hosting provider and domain registrar for my blog as my husband and I reorganize/consolidate accounts. In the meantime, the site may be down for periods. It may be completed in a day, maybe 1-2 weeks.

In the meantime, you can find me still posting regularly over at my Tumblr.

Thanks for bearing with me :)

by amandaw on Tuesday, September 1, 2009 at 2:28 pm No Comments
Tags : metablogging

Friday Blogiversary blogging

I’ve officially been writing here for two full years as of today!

I’ve met a lot of really cool people, I’ve learned a lot of really important stuff, and I hope I’ve made some small difference in some small way, somewhere.

You guys have kept me going. I wouldn’t still be here without feedback, without someone telling me that what I said made some difference to them. I am steadily finding my own voice in writing, sharpening the mind (allow me to stop for a laugh – ha! – ok) deepening my understanding of these issues.

Two years ago, I didn’t identify as “disabled” myself. I was interested in feminism, but I had little concept of the weaknesses the in mainstream feminist movement, particularly around race, trans issues, and (though it’s seemingly never identified so outrightly) class. The more I’ve explored, the more I’ve learned.

And the more I’ve vocalized my thoughts, my experiences, the more I’ve learned about myself; the more I’ve been able to figure out who I am, what I care about, what my strengths are and what I need to work on.

The people who have taken the time to read my comments and posts, to respond, to support and to challenge — you folks are so important. Movement building is a community effort; it takes all of our individual voices to form a strong collective force. Even when you feel small and isolated, you are still a part of the whole, an important part.

I want to encourage anyone who feels small and unsteady to raise your voice, to speak out, to detail your experiences, how they affect your views, how you think we can make this world better. Our personal stories are far more powerful than many let on. We, the small people, connect with each other, commiserate, deliberate, and decide on ideas and priorities that trickle up, over time, to the top reaches of the power structure. It does happen. We make it happen.

I love hearing from all of you. And I hope you will speak out more — in comments here and elsewhere — or in your own space — and develop your own voice. You might feel small and unimportant, but you might be surprised, when you tap into that voice, and feed it, and shape it — how strong it is.

And you might — like me — be surprised, when you use it, to find people who normally keep quiet will speak up.

Your individual experiences may not be representative of the mainstream. That is all the more reason to speak about them. Because there are others, like you, who would be strengthened to see their experiences represented somewhere.

And the entire community will be strengthened when it can recognize the range and diversity of experiences within it.

Thank you for everything you have contributed here. And I hope I’ll see you around.

by amandaw on Friday, July 17, 2009 at 5:52 pm 2 Comments
Tags : community, disability, diversity, feminism, justice, metablogging, speak up

Take the hit to make the play

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

***

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

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

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

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

***

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

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

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

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

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

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

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

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

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

Academically.

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

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

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

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

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

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

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

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

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

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

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

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

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

Oh: and pandas are cute.

***

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

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

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

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

We all have different roles. And I know mine.

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

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

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

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

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

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

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

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

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

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

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

I take the hit to make the play.

***

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

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

And it hurts.

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

The thing is

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

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

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

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

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

it is so hard…

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

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

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

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

by amandaw on Wednesday, July 8, 2009 at 6:00 pm 11 Comments
Tags : accessibility, assholes, control, culture, disability, feminism, fuck that, i thought you were supposed to be my ally, identity, justice, metablogging, personal, privilege, problematic attitudes, roles

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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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