Category Archives: introspective

Inertia

introspective, , , , , , , ,

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

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

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

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

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

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

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

***

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

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

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

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

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

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

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

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

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

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

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

(Cross-posted at three rivers fog.)

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

Injury versus disability

bodies, introspective, normality, Uncategorized

I have an injury – animal bites on my face, forearms and hands from a skirmish with a feral cat outside my office building. I’ve got quite a black eye with puncture wounds on my cheek, so my injuries are immediately visible. I’ve also got severe swelling in my left index finger so I can’t bend it or use it for anything, and bumping it against something sends extremely sharp pains through my hand that last for about half an hour.

I am having a fair amount of trouble with it. I can’t open jars or plastic packaging or use a can opener. I can’t hold the steering wheel very well with my left hand. I’m right handed so I can still use a pen and hold a fork and spoon, but my typing is totally jacked up – I can use the other fingers on my hand if I keep the injured finger extended, but that makes my hand go in an unfamiliar position and the rest of the muscles start cramping and aching if I do it for long, making me rely primarily on hunt n peck typing with my right hand. (I usually type over 120 words per minute, so this significantly slows me down.)

When people observe or hear about these functional impairments, they keep saying to me “oh well thank goodness this will heal. Imagine how it would be if you permanently lost the use of your finger!” and “well at least your face won’t be that wasy forever. Let’s hope it doesn’t scar.” They seem to regard these temporary injuries as a disability simulation of sorts and are reassuting me that I won’t continue to be this impaired or have this reduced functionality only because my injuries will heal.

I, on the other hand, feel that if these injuries were permanent disabilities, I’d have a lot easier time dealing with them. The problems I’m having are largely because it is a new situation for me and my habits and unconscious behaviours are all based on my assumption that my left index finger works fine. I haven’t had any time to develop the mental awareness or the physical abilities to compensate for the problems with that finger – if the other muscles in my left hand were more used to typing without that finger, I’m sure I’d be able to type more quickly and without as much pain in my left hand. Similarly, if my brain could remember that bumping left index finger leads to extreme pain, I wouldn’t have banged it against the car door every single time and I’d buy a purse with more organization capacity so I didn’t have to dig through it with both hands to find anything.

This isn’t to say that having this injury be permanent wouldn’t have long-term effects on my functional capacity. It just means that the functional effects of my temporary injury are in no way indicative of my functioning or my abilities were this a permanent disability. And that having this injury doesn’t teach me anything about what it would be like to have this disability.

The one aspect that has been eye opening for me is the demonstration of how entitled people feel to talk to you about visible injuries or disabilities. My finger isn’t that noticeable and I’m wearing long sleeves because of the weather, so only my facial injuries are visible – and boy are they visible. Even when wearing sunglasses to cover the worst of the bruised and swollen eye, the puncture wounds on my cheek are prominent. And in the day and a half since I was injured, I have been asked to explain “what’s up with my face” by virtually every stranger I’ve encountered. So much so that I’ve already started making up stories (my favorite: “I was being attacked by a vampire but I managed to deflect him so he bit my cheek instead of my neck.”). The feeling that my body is fodder for them to gawk at and demand explanations for is new to me, as my disabilities are usually not visible and I’m used to passing in public. While I don’t pretend this temporary experience in any way lets me know what it would be like to live as a person with a permanent visible disability, this is the only aspect of my injury experience that I feel is at all relevant to understanding the experience of disability.

Not So Silent

activism, bodies, introspective, social attitudes, violence, , , , , , , ,

As I’m typing this, it’s the wee hours of the morning of December 6th. Today marks the 20th year since the Montreal Massacre, when Marc Lepin walked into the Ecole Polytechnique and murdered 14 women, blaming feminism for ruining his life. (He also injured 10 other women, and 4 men, before turning the gun on himself.)

Over the past 20 years, I’ve probably attended 14 memorials for the Massacre. The ones I’m most familiar with were the ones held at the first university I attended. There, we would gather in a solemn circle lit only by candles. 14 young women would each read the name of one of the dead, and blow out their candle, and we would mourn.

Last year I attended Halifax’s first “Not So Silent Vigil”. Instead of focusing on the murders in Montreal, this vigil was for all the women in Canada who have been victims of domestic violence. Speakers, singers, dancers, and even a hilarious feminist comedienne took on the subject of violence and sexism. There was a moment of silence, in memory of our dead. There was a moment of screaming, for the women who cannot or will not scream.

We have this memorial for gender-based violence every year. In recent years, national vigils have begun to remind us of dead and missing First Nations women (Sisters in Spirit Vigil [PDF]) There are vigils around the world for trans* men and women. We are beginning, slowly, to talk about how these different identities mean that some women’s deaths count, while others don’t merit more than page B3 in the local news.

The Not-So-Silent Vigil (last year) was a group project where many women representing many groups in Halifax came together and created a dramatic and moving experience. I found it to be inclusive of First Nations women and Africa-Nova Scotian women, although others may have different opinions.

It was until I was walking home with Don that I realised that there had been no mention of women with disabilities.

I don’t fault the people behind the Vigil for this. They did a lot of hard work to bring together the groups that they did, and I have no idea if more people will be involved this year, if women with disabilities will be included. (If not this year, then I should get myself involved for next year – I think the women who do this work every year take on a great deal, and I wouldn’t want to ask them to do more than they already are.)

But I also wonder – would it be controversial for me to ask for a moment of silence and screaming for Tracy Latimer? Every time her murderer, her father, comes up for parole, the newspapers take the opportunity to argue whether or not it was morally wrong for him to murder Tracy. People argue that he should be released, because it’s not like he’ll kill again. Disabled children don’t come along every day, after all.

I don’t know, I don’t know. It’s really hard for me to write about this. I don’t want to risk being told that the murder of women with disabilities is a special interest that shouldn’t be brought up at this memorial. But at the same time, I have no reason to believe that I would be told that (except that I’ve been told that in the past, about other memorials to violence against women, but not by this group). Is it appropriative to want to name our names, to remind everyone that violence against us is sometimes considered okay, because our lives are considered less worthy?

Katie-Lynn Baker was starved to death by her mother. Her murderer argued that she could tell Katie-Lynn, who had Rett Syndrome (a form of autism) and couldn’t speak, wanted to die, so she just stopped feeding the 10 year old girl. Her murderer was never even charged with a crime.

Chelsea Craig was fed a lethal dose of medication by her mother, who was found not criminally responsible due to mental illness. The accused claimed she murdered Chelsea because she didn’t want to leave Chelsea alone with her father.

The murderer of Charles-Antoine Blais drowned him in the tub because his autism was too much for her. After her year of community service, she became a spokesperson for an Autism foundation in Montreal. He was 6 years old.

We don’t talk about these names, these deaths, very often. Tracy’s comes up whenever her murderer is up for parole, but I had a hard time finding information about the other names, about Chelsea and Katie-Lynn and Charles-Antoine. We don’t seem to have a national memorial, a day to honour the children who are murdered for being disabled, the women who are raped for being institutionalized, the beating and torture of cripples done out of boredom. We don’t recite the names of our dead.

Should we? Should I incite controversy and recite the names today? Should I shout them during our moment of screaming, for myself if no one else? Should I approach the women who have worked so hard on this vigil and ask to be a part of it, so next year I can recite the names of every woman with disabilities murdered in Canada in the next 12 months?

Is silence ever the right answer?

Today we remember our dead, killed for being women and daring to attend Engineering School, and I recite these names, like a rosary, every year.

Geneviève Bergeron
Hélène Colgan
Nathalie Croteau
Barbara Daigneault
Anne-Marie Edward
Maud Haviernick
Maryse Laganière
Maryse Leclair
Anne-Marie Lemay
Sonia Pelletier
Michèle Richard
Annie St-Arneault
Annie Turcotte
Barbara Klucznik-Widajewicz

I hope you will all forgive me, but this has taken 2 1/2 hours to write, and I have no idea if I’ll be able to discuss it.

I Don’t Trust Myself

identity, introspective, mental health

One of the aspects of my bipolar that I find the most exhausting is the need to constantly monitor my own moods. Even though I am medicated to the hilt and haven’t had a manic episode in 5 years or so, I spend at least part of every day worrying that I am edging too far towards mania or depression.

Part of this is good – I’m attuned to my moods, I know if I’m experiencing a big swing, I can immediately address it with my psychiatrist and adjust my meds or go back into therapy or whatever needs to be done. That has served me very well in the past, allowing me to catch hold of a rope before I slide so deep into depression I can’t manage to do anything to help myself.

But it also means that I have what I think of as a dual consciousness. One part of me experiences things, reacts to them, has emotions. And the other part of me sits back and watches and worries. Is that a reasonable response to the external stimuli? Is that within the normal range of emotion? Am I just a touch too upset about something? Is that bouncy happy feeling I have because it’s a sunny day, or because I’m starting to verge into mania?

This means I’m not sure I fully experience any of my emotions, because a portion of me is always reserved for this meta-cognition, this constant monitoring and evaluation of how I feel. And ironically, it’s the strongest or deepest emotions that cause me the most concern and trigger that meta-cognition the most, meaning it’s those emotions I experience the least. I’m not sure I have any idea what it feels like to be happy without that edge of worry. I’m not sure I have any idea what it feels like to be sad without part of my brain running through my recent sleep schedule and medication dosages.

This is why I value so highly the experiences that force my meta-brain to shut the hell up. The most recent example was a Nine Inch Nails concert where I was pressed between the bodies of strangers, drenched in sweat, with aching feet and legs, but the music and the beat were so loud they filled all available space and my brain was thinking of nothing but screaming along with the lyrics I’ve heard so often they seem like a part of me. I couldn’t feel anything but music and the bass running through my body, couldn’t keep hold of any thought except the words of the song. They filled me up so much that my meta-brain had no room to be separate. And I got some time to simply experience things, to just feel, without that separate evaluation and judgment going on.

I don’t know how to create those experiences for myself – when I’m so overwhelmed by sensory input that the meta-brain that usually sits in the balcony and comments on everything going on gets forcibly dragged to the floor to experience things with the rest of me. But at the same time, I credit that meta-cognition with keeping me safe and protected and getting help when I desperately need it, so I don’t want to turn it off entirely.

I just wish the checks I put on myself to keep myself safe didn’t lead so directly to feeling dissociated from my own emotions and experiences.

Finding Myself in Unexpected Places

introspective, normality, , , , , , , , , , ,

On the way home from work the other day, the classical music station in Dallas, WRR 101.1*, played a really good performance of Beethoven’s Bagatelle for Piano in A minor, WoO 59 “Für Elise”. It’s pretty, of course, which is all it needs to be. But every performance (and every work of art and every published document) is an act of communication among the composer, the performer, and each person sensing it. Every person involved in every act of communication brings xer own perspectives and experiences to the social transaction.

I mention this to provide some context for how I reacted to this particular performance of this piece. I’ve it heard scores of times, probably, but I don’t know if I have since I’ve been thinking of myself as a person with a disability. The parts of it that rise to no real musical resolution felt, to me, like the steps of a dancer with a mobility impairment moving across a stage. Xe walks with a gait and doesn’t move with the precision of a physiotypical dancer, and sometimes it feels as though xe might fall (when the music rises in pitch and stops short of finishing the phrase to return to the core, lower-pitched theme), but xe dances anyway. And xe and xer dance are beautiful anyway. It could’ve been someone a lot like me.

It felt pretty damn good, actually.

Has anything artistic — and I include popular culture in art — recently (or memorably but not so recently) made you feel included? Even if it wasn’t necessarily the creator’s intent?

* It’s owned by the city and actually makes a profit. Naturally various Republican mayors and city council members have called it unfair competition (not that there’s another classical music station in the North Texas broadcastmarket) and have tried various times to get it or the transmission station or the broadcast license sold off. Fortunately for us, they’ve been unsuccessful every time.

Umbrella Terms

101, introspective, social attitudes, , , ,

My pet peeve: Labeling “othered” groups as though everyone who falls under that umbrella term has the same needs to achieve full inclusion in society.

For obvious reasons, I’m going to focus on the umbrella of people with disabilities/disabled people right now, but these thoughts have been heavily influenced by reading posts from GLTB activists about trans* inclusion (or lack thereof) and blog carnivals like the Asian Women’s Carnival and International Blog Against Racism Week.

Over the summer, while I was in the process of ranting to Don about my disappointment with our current government’s inclusion of people with disabilities, I was stopped on the street and invited to a talk. “Is it fully accessible?”, I asked.

“Oh yes,” responded the person inviting us. “We have a wheelchair ramp.”

“Do you have material available in braille? Do you have a Sign interpreter?”

“No.”

“Well then,” I snapped. “I guess you aren’t fully accessible, are you?”

(As I said, I was just ranting about this when we were interrupted with this invitation, so it was already on my mind. People need to pick better times to interrupt me. I’d like to think that normally I’d be more polite.)

There’s a certain hierarchy of accessibility that “everyone” knows about. If you have a ramp, you’re good! That this doesn’t address the needs of any number of disabled people is irrelevant – the main image of people with disabilities is that person (usually white and male) in a wheelchair.

So, in the effort to be inclusive without thinking thoroughly about what disability means, and who is included when making accommodations, we end up with situations like this one, from the comments on a post on disability at Feministe:

Willow:

Fire alarms. So it’s great and all when fire alarms have bright flashing lights in addition to the blaring sound, so people with hearing loss (like my dad) will know if the alarm goes off and be able to evacuate, right? Yeah, well, it so happens that I have photosensitive epilepsy, and the light on pretty much every alarm cycles on a frequency that triggers my seizures. So if the alarm goes off, not only do I have a seizure, which sucks in the first place, but I also cannot evacuate the building because I am either (a) unconscious and convulsing or (b) in “zombie mode” and unable to navigate the world safely.

…

I always feel so, so guilty about advocating for accommodations for people with epilepsy that will make the place unsafe for people with other disabilities…but at the same time, I have EXACTLY THE SAME RIGHT to be able to be there and/or be safe there. It seems as though some types of disabled people–deaf, blind, and/or in a wheelchair, in particular–are privileged over others. I lived on campus as an undergraduate, and when the school installed a new fire alarm system that included flashing lights, I was told that they would have someone “come check on me” whenever the alarm went off. Excuse me? You can’t have someone come check on the zero deaf students in the building but the three of us with photosensitive epilepsy have to wait until the fire department shows up? Not to mention the risks that come with having a seizure in the first place (such as, for example, death)?

Thoughtless accommodations, but gosh darn it, we’re “accessible”.

I know next to nothing about epilepsy, and my knowledge of deafness is limited, so I have no idea what sorts of accommodations would balance both the need for a flashing alarm and the need not to cause seizures in people. But that’s not my point. The point is that full inclusiveness, rather than going for the “easy” solution, would actually consider those needs and work them both in. It would be working with people with disabilities to design safety systems that would accommodate everyone. (Deaf people can also have epilepsy, after all.)

Grouping “othered” populations under this umbrella term allows the “general” population to decide “Oh, I’ve included a ramp, I’ve got a flashing light, and there’s braille on my elevator buttons, I’m set.” But we don’t all have those needs.

We’ve been grouped together as having the same needs both because it’s easier for the “general” population to decide they’ve “done enough”, and because we have greater strength in both self- and group-advocating when we band together. But, just like when other “othered” groups band together, things get left out, put aside, maybe next yeared.

I’m still mulling all of this over. My main activism-related issues are The Big Ones – my city is full of “just one steps” and has a serious lack of Sign Language interpreters. But right now, I’m sitting in a room with fluorescent lighting (severe migraine trigger). It looks like the fire alarm is of the flashing-light type. The door is pretty darn heavy. I haven’t seen a single TTY- pay phone on campus. And probably several other things that I’ve missed.

It’s almost like the easiest, umbrella-term solution isn’t the best one.

I’m still thinking about a lot of this stuff – I certainly don’t have all the answers. Feel free to get into it in the comments. (My schedule is such that I won’t be able to respond to anything until evening my time at the earliest, although other moderators will be approving comments for me.)

Why can’t disorder be beautiful?

class issues, feminism, introspective, , , , , , ,

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

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

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

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

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

And that’s the cycle I find myself in.

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

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

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

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

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

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

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

Time and Energy, or Lack Thereof

accessibility, activism, bodies, feminism, introspective, normality, , , , , ,

This amazing post and its follow-up by Anna at Trouble in China (she is also a contributor here, as you may have noticed) got me thinking. [In the interest of full disclosure, my Shakesville post is in there as an example of the problematic nature of inclusiveness.]

Whenever I mention my personal blog in, say, a contributor’s or artist’s bio, I nearly always include the qualifier “sporadically updated.” Regular readers will know that this is partially my style–the dash of self-deprecation–but it masks something else. Namely: I very rarely have the energy to write a whole blog post, to respond to comments, or, hell, to comment on other blogs with wit and insight. This does not mean that I do not exist. It only means that I, quite simply, don’t always have the mental or physical energy to contribute to a medium that is, by and large, designed in favor of the non-disabled.

Before the inevitable questions of “why don’t you just quit?” arise, I keep and have kept blogging for a very specific reason: I cannot just give up. Certainly, there are better writers out there than me. There are better blogs. I have blog friends who are more articulate, more stylistically clever; some of these folks who blog more, or have more readers. Yet I know that the blogosphere is a bit wicked in that one is only as good as her or his last post (to use a worn cliche). Some of us can crank out quality posts nearly every day. Many of us cannot.

I often cannot keep up with a ‘sphere in which other voices–more able voices–have the luxury of time and actual emotional/physical energy to blog. The conspiracy theorist in me wants to chalk this up to the blogosphere’s–and to a lesser extent, the internet’s–design as yet another space where able-bodied folks can “fit,” and can be “productive” in terms of number and quality of posts. For all the talk of the internet as a utopia where one is free to not be embodied, the same old shit seems to keep coming up, along with the big ol’ Cthuluphant in the room: that the world is designed for able-bodied (and preferably white, straight, middle-class, and male) individuals. Productivity, fitting in, responding quickly: These are things that non-able-bodied folks may not be able to do, whether because of issues of time, energy, ease of access, or many other factors. What happens when one cannot type because of searing pain in her hands, wrists, arms? What happens when one finds that he is too brain-fogged to write a post, much less comment on an existing post that many other people have already commented upon? When one is confined to bed because of nausea or all-over pain that forces her to lie for hours, staring at the ceiling, doing nothing because it’s all too much? What happens is that much-needed voices are not part of the conversation. They are lost, but not because they are not there.

This is shameful. There is no other word for it.

Do I know where to begin in pursuit of a solution? No.

Does anyone? I am not sure. I would like to hope that someone does, but I remain unsure.

We’re here. You just might not know it, yet.

Originally posted at Ham.Blog

Email Q&A: What About Womanists?

administrivia, feminism, identity, intersectionality, introspective, language, , , , , ,

We’re not even a week since the roll-out, but the response so far has been tremendous. Along with the excellent discussion in comments, we’ve gotten some really great questions, like this one (which we’ve paraphrased from the original email):

Why is the name of the blog Feminists With Disabilities? Wouldn’t it be more inclusive, especially of women of color, if the name acknowledged the womanist movement? Say, Feminists and Womanists with Disabilities?

We’ve been discussing this since we got the email, and we’ve come to a consensus that for now, we aren’t comfortable using womanist in the title of our blog. None of the current group of contributors identifies as a womanist. While we aren’t all white, those of us who are women of color identify as feminist. Those of us who are white don’t want to be disrespectful of the work womanists have done and are doing and appropriate their word for their movement created specifically in response to white privilege and oppression.

We also do not want to imply that we are authorities on womanism and that anything about womanism needs to change by including “womanists” in the title. Many of us are concerned with the historical exclusion of women with disabilities from mainstream feminism, and that exclusion is the primary focus of this website.

None of this means that we don’t welcome womanists and womanists with disabilities to join us as readers, as commenters, as guest posters, and as contributors (and if someone who did identify as a womanist did join us as a contributor we would revisit this issue). We want to create a safe space for all women here, and we do not want womanists to feel excluded; they have much to add to the conversation, and we look forward to hearing from them. We hope that FWD will be a place where inclusivity and respect are the rules rather than the exceptions.