Monthly Archives: October 2009

Conceptualizing disability

21 October, 2009bodies, normality, Uncategorizedautism, body image, communication, conceptions of disability, difference, disability, language, mislabelling, myths and misconceptions, normality, research, science, self-acceptance, social treatment, symptomsamandaw

Amanda flags a great post by Anne C at Existence is Wonderful, which catalogues “three different ways of looking at autism — in terms of neurological structure, in terms of lived experience, and in terms of outward behavior.” And Anne does such wonderful things with this delineation. Click through to read the whole post, which addresses attitudes toward autism in particular, but I think Anne hit on something that can be safely generalized outward — her three approaches toward autism can also, in fact, be three approaches toward disability.

AnneC’s chart: Conceptualizing Autism, transcribed below[1. The chart reads in three columns, transcribed here:

* Not Outwardly Visible (Indicated by comparison studies of tissues from autistic and non-autistic brains, and some imaging studies)
* Neurology (Brain Structure/Wiring): Autistic and non-autistic brains are different at the physical level!
* Some studies suggest: Differences in “minicolumn” cell concentration and size; Local/global processing differences; White/gray matter ratio differences … but there is still no conclusive “autism brain scan.”

* Not Outwardly Visible (Can be extrapolated from tendencies in performing certain cognitive tasks, and from autistic self-reports and introspection)
* Cognitive & Perceptual Style: What characterizes the experience of being Autistic
* Tendency to notice and attend to different stimuli than non-autistic people; Language processing differences (learns and uses language atypically); Sensory processing differences; Different memory and problem-solving strategies

* Outwardly Visible (Patterns & tendencies in a person’s actions, demeanor, etc.)
* Observable Traits/Behavior: What usually gets a person identified/diagnosed as Autistic
* Atypical/”uneven” development (skills acquired in nonstandard order and manner); Diagnostic criteria (i.e. DSM); Behavioral tendencies indicate underlying differences, but do not comprise those differences!

]

Some highlights, all emphasis mine.

My guess is that there are probably multiple underlying structural variations that can produce “autistic phenotypes”, and it will be interesting to see how this pans out, but at any rate, one important aspect of how I presently conceptualize autism is the fact that some structural differences do seem to really exist. And if the difference does indeed go “all the way down” to the brain, as it appears to, then it makes very little sense to (as some seem to) view autism as some kind of disruptive “module” overlaid upon a typical brain.

This is significant both in the cognitive science and the ethics realm, as it indicates (a) that experiments presuming autistic brains to be “broken versions of normal brains” are likely useless, and (b) that the best ways to help autistic people learn and develop functional skills are those which acknowledge an underlying and pervasive difference as opposed to those which presume that autism can be “removed” or “trained out” by simply eliminating surface behaviors.

Yes! Autism, or any disability, is not a case of “a normal brain gone wrong.” It is not a defect or even a modification of a “normal” brain. It is, simply put, variation. We will never overcome society’s confusion and mistreatment toward pwd as long as we think there is any such thing as a “normal” brain (or body) at all. Is any one color or pattern of a cat’s coat a “normal” one? Or are there many varieties, none inherently better or more-important than the others?

At heart of society’s approach toward disability is the assumption that there is a standard template for the human body, and if any one body turns out to be different, it is a deviation from that standard. As such, the solution to any problems resulting from said differences is to attempt to make up for that “deviation,” to attempt to make the “defective” body more like the standard template in whatever way possible.

Put this way, it is obvious that this approach is misguided at best. The solution is not to change the individual body to fit the narrow, faulty expectations, but to adjust those expectations to include the range and diversity of the human experience.

Similarly:

Mind you, none of this is meant to imply that I (or the researchers engaging in the experiments demonstrating visual-spatial trends in autistic persons) believe that autistic people cannot be disabled. Certainly, “uneven” development (which may include significant delays alongside “advanced” skill acquisition in some individuals), communication difficulties, and consequent social, educational, and occupational issues are very real. However, the existence of real disabilities and difficulties need not imply that the “whole person” is somehow diminished by the fact of being autistic, or that one cannot have attributes which exist as both strength and weakness depending upon the context.

This is where Anne comes back around to detail the third approach (outwardly knowable traits). She observes:

The orange column on the right of the diagram summarizes what most people probably think of as “autism” — that is, the externally-visible things that generally get people suspected of being, or identified as being, autistic in the first place.

This is where we see such things as diagnostic checklists, observations about a person’s developmental milestones (and when/if they meet certain expected ones), outward actions, language use, body language, tone of voice, social/educational/occupational success (or lack thereof) in the absence of modifying factors, etc.

What is interesting, and perhaps a bit unnerving, is that this category is at once the one people tend to put the most stock in (in terms of identifying autistics, in terms of determining what educational supports we might need, etc.) and the one most subject to cultural biases, personal biases, misinformation, and the ever-changing social lens through which different kinds of people are generally viewed.

…which, honestly, is a bit scary and unsettling for those of us who are going to be the ones to bear the consequences of any such things.

Why can’t disorder be beautiful?

20 October, 2009class issues, feminism, introspectivechronic illness, chronic pain conditions, disability, life, personal, self-acceptance, self-perception, spoonsamandaw

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?

Guest Post: “There’s something wrong with Esther”: Disability, deception, and Orphan

20 October, 2009media and pop culturedisability in fiction, exclusion, family dynamics, invisible disability, media and pop culture, mislabelling, movies, myths and misconceptions, narrative, orphanGuest

Tera lives in the American Midwest with her mother, five cats, two
parakeets and several imaginary friends. She is neurologically
atypical, a lover of cartoons and scary movies (equally), asexual, and
a gamer dork. Her Pokemon army is probably more awesome than yours.

Tera regularly blogs at Sweet Perdition.

WARNING: Major spoilers for the movie Orphan, including the twist.

Let’s play a game:

A little girl–five years old, maybe six–rushes out of a building. The sign above it says: “School for the Deaf.” She hugs her mother, who greets her in American Sign Language (“Hello, Max!”) They sign cheerfully about Max’s day; at bedtime, Max wants her mother to read her a story. It’s a picture book about a child whose baby sister “went to Heaven” before coming home from the hospital. (Max’s baby sister, Jessica, also went to Heaven before coming home from the hospital; her mother doesn’t want to read this story, but Max insists). Story finished, Max removes her hearing aid, turns off the light, and goes to sleep.

Max’s sister, Esther, is nine years old; the family adopted her just recently. Esther says she is “different.” She’s from Russia, but speaks perfect English with a slight accent. She cuts her food perfectly–so perfectly that brother Danny thinks it is “weird.” At school she wears gorgeous, old-fashioned dresses when other girls are wearing jeans and tee-shirts. She paints like a gifted adult. While taking baths, she sings a song that’s way before her time: “That’s the story of, that’s the glory of looooove!” She understands the word “fuck” as more than just a naughty word that adults say sometimes (“That’s what grownups do. They fuck.”), expertly loads a gun, puts on a black dress and make-up and tries to seduce her adoptive father. (“What are you doing, Esther!?”)

What is Max’s impairment? What is Esther’s? And why can we recognize Max’s within five seconds of meeting her, while it takes us nearly two hours to learn–pardon the phrase–what is “wrong with” Esther?

Continue reading Guest Post: “There’s something wrong with Esther”: Disability, deception, and Orphan →

“What can I do?”

20 October, 2009accessibility, blamingaccessibility, advice, barriers to access, disability, exclusion, fibromyalgia, illness, invisibility, invisible disabilities, invisible disability, isolation, me, participation, passing, personal, privilege, social inclusion, social treatment, structural vs. individualamandaw

Access is an all-consuming endeavor in a disabled person’s life. I love that the disability community learned to frame it that way: it emphasizes that the problem is not the person, their body or their condition; the problem is society’s indifference.

Many accessibility solutions are structural; they require collective action — constructing spaces such that wheelchairs can be used within them; hiring interpreters and providing caption services… these are not actions that can be undertaken by a single person.

What is unfortunate about this, though, is that it relieves the fully-abled individual of hir responsibility to hir disabled counterparts. It means the fully-abled individual can safely get away with never thinking about disability, and the connection between societal access and hir actions specifically, at all. Sie never has to consider how her attitudes and behaviors very really shape the environment of hir peers. Sie never has to stop and think, how does what I am doing affect those around me, and how can I change that to make things better for them?

When all solutions are collective, your own actions become invisible. Your contribution to the world around you becomes invisible. The power you hold over other people becomes invisible. Your status as part of the problem becomes invisible.

So let’s be clear — YOU ARE PART OF THE PROBLEM. And there is no instant solution, no magic words that can make that “go away.”

But what can you do?

I thought of what I think is an illustrative example the other day.

When I was attending college, I had a lot of walking to do — at least a mile from my dorm to each class, and of course the walking in between. It was exhausting, and it was one of the major factors that led me to drop out the first time.

One of my classes was on the sixth floor of the humanities building. Another was on the fifth floor of the math and science building. And I had several choices on how to reach those points:

1. The elevator.

2. The escalator (in the math building).

3. The stairs.

Here’s the irony: the only accessible solution was the stairs.

I have a physical disability. That disability is also invisible. I can climb stairs, but when I do it precludes any remotely physical activity (up to and including sitting upright) for a couple days, compounded the more flights I have to climb.

This was not teneble, not when I had to do this three times a week, and that doesn’t even include the energy required to walk to the building in the first place, to sit in the hard uncomfortable chair for an hour taking notes, and the energy I needed to do the home assignments, projects, and studying necessary for the class. And that doesn’t account for my four other classes!

So: Why couldn’t I use the elevator?

Well, because everyone else was using the elevator — so many people that there was a long line and usually a 15-20 minute wait before you could step foot in one.

Again, I have an invisible disability. I could have pushed to the front of the crowd every day, jostling my way through dozens of people to weasel my way in the door. And that would have made me kind of an asshole, you know?

So what do I say? “EXCUSE ME, I’M DISABLED, I NEED TO GET IN.” And everybody would turn to look at my lanky eighteen year old body, with no visible deformities, no mobility aids or other assistive devices or personal aide or caretakers, having walked in the front door just fine. And then everybody would be thinking that I was kind of really an asshole.

Complicating things is that at the time, my severe anxiety was undiagnosed and untreated. There was no way I could have even squeaked out a humble “excuse me,” much less forced my way through the crowd, much less shouted for all to hear that they needed to get out of my way and give me “special treatment.” Oooh, how I loathed special treatment. It made me feel like I was, you know. Disabled. Not normal.

Anyway.

This crowd existed in front of every elevator in every building on campus. Not all of the people waiting at that elevator were healthy enough to take the stairs. There were surely others with invisible illnesses like me, and others yet who just weren’t in the greatest shape, and so on. But the majority of those folks took the elevator because it was there. And those folks are the ones who made my life, and my participation in society, that much harder back then.

So: Why couldn’t I use the escalator?

Here’s a different problem. A lot of kids used the escalator. An escalator, as you know, is basically a revolving set of stairs that moves upward, so that you don’t have to do any climbing to get up to the next floor.

But here’s the problem. Everyone who took the escalator? Walked up it.

Everyone.

Now, if I wasn’t going to be climbing the stairs, why the hell would I go and climb the escalator? The entire point is to spare me that climb, right?

But I couldn’t use it that way. If I stood still on a single step, that would clog up the line of kids studiously climbing, climbing. They were narrow enough for two small people to stand side by side, but then not everyone is small, and we also had to carry our bulky book bags and such with us. So if one person stays still, there is a bottleneck effect — only a trickle of people can squeeze through, and everyone else gets stuck behind you standing still.

Assuming everyone in that crowd is healthy, someone who stands like that and creates that kind of jam is, again, kind of an asshole — right? So what was I supposed to say? “I’m disabled, sorry.” While everyone stares at the back of my entirely healthy-looking body for the next few minutes.

Right.

So: what was I left with? Well. The stairs were pretty free. Maybe I could have started to carry a cane, just to visually signal to people that I was sick. Even though I didn’t need that cane and wouldn’t know what to do with it. Do I hunch myself over, tousle my hair and do my best to act like I’m ninety years old and barely hanging on? Just so people would maybe, just maybe, believe me?

Or maybe… maybe everyone else involved could have stopped and thought about how their actions were affecting other people. Because I sure as hell wasn’t the only one facing this dilemma.

Just because the elevators and escalators existed did not mean they were therefore accessible to the people who needed them. Because accessibility is more than structural. It also counts on the actions of each individual.

Yes, you are part of the problem. There are times where you are in the way, where your actions are creating difficulties in someone else’s life. And you probably can’t even see it. But, you know — maybe you would — if you started looking.

What does it mean to heal?

19 October, 2009bodies, feminism, intersectionality, language, normality, violenceabuse, body image, difference, feminism, healing, justice, language, rape, sexual assault, sexual violence, trauma, wholeness, word useamandaw

Perhaps this is the wrong question. Instead, I propose: What is there to heal?

Healing is the process of a body, having been injured in some way, doing what it takes to restore itself to normalcy. Merriam-Webster says, specifically, “to make sound or whole” and “to restore to original purity or integrity.”

Take note of the words I have highlighted. What are they saying?

This cultural idea of healing, applied to a person’s spirit rather than body, draws upon the idea of an abnormal body being made “normal.” It assumes that any person not normal should be made normal.

But there are all sorts of bodies in this world. Bodies with broken bones, broken skin, disfigured limbs, faces, with cuts and gashes and wounds, missing limbs, missing organs, organs which work in abnormal ways — according to our cultural norms.

And, much the same, there are all sorts of people in this world. People who have survived assault and abuse, been subject to violence, faced trauma, been manipulated or neglected, dealt with addictions, lost loved ones. People who have experienced any number of things which cause them significant distress.

These people are expected to “heal” from their experience. They go through a modest amount of time processing the event emotionally and then return to normal.

But why should they be made normal?

Why should any broken person be pushed and pressured into a form which does not fit?

Why is it that a person who is anything other than normal is therefore less than whole?

Why can’t a person simply be who they are, even if they are injured or broken or disfigured, and still be considered a whole person?

Any person who has faced trauma will need to find ways to process their trauma, ways to cope, ways to live with what has changed in their life. But that person should not have to push hirself to go back to how things once were — or to make things resemble what they are for a person who has not faced that trauma. Things may be different. There is not only one way to live a life. There are many. And perhaps you will settle into a different one — one which works better for who you are now — which may not have worked for who you were before. And that way is no less right.

What do you do when life changes? You adapt. You make things fit you. You don’t make you fit everything else.

It’s ok to be broken. Being broken does not make you less than whole. It makes you different. And that’s ok.

From the Comments

19 October, 2009From the commentsAnna

I wanted to take a bit of time to highlight some awesome comments that you may have missed on last week’s posts. I originally intended to go through all the posts last week and pull up interesting comment discussions, but so much interesting comment discussion has gone down that I’m just going to highlight a few from the earliest part of the week.

In response to our introductory post Welcome to FWD/Forward, Rosa started a conversation about the different ways that disability is talked about in North America vs the United Kingdom:

You use the term someone “with” a disability, I don’t know if this is different in the US but in the UK the disability movement have rejected this term in favour of a “disabled” person. The reasoning behind this is the social model of disabilities understanding that someone is not “disabled” by their impairment but rather by societies reaction to that impairment – thus they do not “have” a disability but are “disabled” by society and the goal is to remove those disabling barriers. So I just wondered what the reasoning behind your use of “with” is?

Chally, Amanadaw, and Oyuang Dan discuss that point in response.

In response to Annaham’s post Defining Disability, Rachel asked about temporarily able-bodied:

I hope this is not an inappropriate question, as I am still learning about these issues, but I wondered about the part of the definition above in which “Disability, additionally, is a term that refers to a long-term or lifelong condition.” Given the preference for “temporarily able-bodied” as the descriptor for those who are currently without disability, can people not be temporarily disabled as well?

Amandaw responded to that in the comments.

In response to abbyjean’s How Do We Understand This Experience?, many commenters responded with their own understanding of their disability, including this from Meg Thornton:

Part of me knows it’s all neurotransmitters and chemicals in the brain. But then again, so is sight, hearing and everything else which makes up the complexity of life. So I’ll keep thinking of Charlie trying for his commission when I get those little thoughts which say “don’t forget, you could always kill yourself” in the middle of things now and then, since it’s easier to just tell Charlie I’m not interested than it is to try and decode all the complex thought patterns which got me to where I am.

Really, all the comments on that post are great.

The comments in Lauredhel’s post Telegram to TABS on Spoon Theory get into another interesting discussion about language, both inclusive and exclusive. A.W. wrote:

For language and spoon theory, I do and don’t have a problem with tab. It fits very, very well for the judging of actions and the conservation of resources when dealing with bodily illness/pain. But deciding on actions and juggling resources also fit for severe depression and other mental illnesses, say, ptsd. (which I’m tempted to post about, but not sure it would go anywhere. Managing triggers (and how much of them you can reliably handle) is a pain in the ass). It’s over and under and – through -, and you can’t get away from it. For me the doling out of spoons when dealing with my mind is incredibly similar to when I’m dealing with body problems. An able mind is just as important. And no, lack of sleep from a kid at 2 am for the third night in a row isn’t the same dynamic. I’ve dealt with those things too, it isn’t even remotely the similar. Perhaps dropping the body bit and shortening it to ‘temporarily able’ would work.

Thank you so much to everyone who’s been participating in the comment threads, giving us feedback, and discussing ideas they’ve developed around or related to our posts. My schedule is such that it’s hard to keep up with comments as they’re happening, but it was great going back through earlier posts and seeing what people had been saying!

Ableist Word Profile: You’re so OCD!

19 October, 2009Ableist Word Profile, language, mental health, Uncategorizedableism, disability 101, OCD, things people say, word useOuyang Dan

Welcome to Ableist Word Profile, a (probably intermittent) series in which staffers will profile various ableist words, talk about how they are used, and talk about how to stop using them. Ableism is not feminism, so it’s important to talk about how to eradicate ableist language from our vocabularies. This post is marked 101, which means that the comments section is open to 101 questions and discussion. Please note that this post contains ableist language used for the purpose of discussion and criticism; you can get an idea from the title of the kind of ableist language which is going to be included in the discussion, and if that type of language is upsetting or triggering for you, you may want to skip this post.

Someone walks into my kitchen for the first time looking for something they will more than likely find the cupboards nicely arranged. I like things with the labels facing out, neatly lined up, dressed to the front. I like to have like items together (my cooking items are in a separate area from my baking items, and snacks, to begin to scratch the surface) to make it easier to find things. Our Korean apartment is smaller than we are used to in some areas, so being organized is a must when it comes to storage. We have Tupperware canisters lining the counter tops with frequent used and bulk items in easy reach, and also in the fridge w/ the produce already prepped. When we bring meat home from the market we divide it into portions and vacuum seal it before storing it. Some of this is for space sake, some of it is because I like to cook and will use spoons I sometimes steal from elsewhere to do so, and having the kitchen arranged as such makes that easier. I have had more than one guest wander through the kitchen chuckling and mention to me how OCD it is (which really doesn’t make sense if you think about the acronym).

No. My kitchen is clean. It is neat. It is sometimes meticulous (when the dishes are done), it is user friendly, well organized, color coded, over-the-top arranged, even. My aunt would say you could eat off of my floors (some days, but we do have a seven year old).

OCD, or Obsessive Compulsive Disorder, isn’t just the tendency to keep things all tidy like Mary Poppins on a sugar rush. It doesn’t mean that you like your clothes hung in chromatic order or your socks folded a certain way, or even that you sort your M&M’s into color groups before eating them. It isn’t your friend with her dust free home or Bree VanDeKamp hair or Emily Gilmore six-inch tapers.

It does mean that you tend to have thoughts (obsessions) that intrude into your mind and make you extremely uncomfortable, because you know that they are unreasonable. Some people have thoughts where they hurt themselves or their loved ones. When I was much younger I once had repeated visions of shoving a corkscrew into my eye while at the bar where I was working. Understandably it was bothersome, and actually there were times that it worried me to tears, because I knew I wasn’t going to shove a corkscrew into my eye, and I couldn’t figure out why my brain was giving me that picture. People often engage in repetitive actions (compulsions) to alleviate the stress of these thoughts. I wiped bar glasses and liquor bottles until they were spotless, and later at home plucked my eyebrows into oblivion because they were never quite symmetrical. I brushed my teeth until my gums bled…anything to keep my mind off of that fucking corkscrew. In your mind you know that having washed your hands or brushed your teeth fifteen times before school has probably already taken care of any germs (and skin or enamel), but you can’t get the thoughts of those germs gone. So you brush, or you wash. And you still think your hands are covered in bacteria or you can feel your teeth rotting in your head (even though you know it isn’t true). So you wash again…and you miss that first class…even though you know better.

It overcomes your life. OCD isn’t just some cute little habit you have of always placing everything on your desk perpendicularly or always lining shoes by the door. It actually interferes with your life and how you are able to live it.

When I was in college I knew that I wasn’t going to blow up my apartment. My rational mind was well aware of that fact, even though I could see the building on fire and me standing outside of it. But after cooking, when I had to leave for class, I had to go over to the gas stove and turn all of the dials on to make sure I had turned them off…even if I hadn’t used them. The oven too. I just couldn’t stand the thought of leaving the gas on and having something happen to my roommate while she slept. Then I would grab my bag…and even though I knew I had just. checked. the. damned. knobs. I had to go back and check them again. After this I might get out the door and lock it, but then I’d have to go back in and check again. The next time I might make it all the way down to the main door of the building. “What if you missed one? You could blow up the whole building!”. Back up three flights of stairs, unlock the door, and check the knobs again. Of course they were fine, just like the last three fucking times I checked. That didn’t stop me from having to go back two more times, once after thawing my car, and once after I had actually left the parking lot, made an illegal U-turn, and gone back. I kept seeing the whole building go up like a giant bonfire on a July evening in Michigan.

I was two hours late for class.

I was obsessed with numbers. If I had pieces of something I couldn’t eat it unless it could be divided into odd-numbered groups of odd numbers. My weight became an obsession, which isn’t at all uncommon in people with OCD, and no matter how much I lost I was certain that I was disgusting and fat and gross to everyone who saw me. I actually measured “ins” and “out”, and I will leave you to those pleasant details all on your own.

Years of therapy later I am able to find myself in a place where I can control my OCD, and I have come a long way in managing it. This isn’t true for everyone, because each of us are unique and what worked for me isn’t going to work for the next person. I am by no means “cured”, but there is something to be said for being in a stable home environment for the first time in my whole life that has turned the corner for me. There are things that will cause me to slip…

Some other fun facts about OCD.

There are some lesser known offshoots, such as Trichotillomania and Dermatillomania. These conditions begin with the same intrusive thoughts, but instead manifest with compulsive hair pulling and skin picking. I have both of these conditions. The hair pulling left me with little to no eyebrows, and an embarrassing bald spot on the back of my head that covered nicely with a military style bun. Without babbling on as I am wont to do, it was another thing I had to work through with a mental health professional (and one awesome esthetician). The skin picking is still a challenge, and as stress in my life heightens so does that. This is the most embarrassing of my anxiety issues because this leaves the most obvious marks on my face. My arms I can hide with long sleeves. Even though I am incredibly aware of the marking and scarring left, most people don’t notice it, unless they are very close to me, and even then most don’t unless I am comfortable enough around them that they have actually seen me doing said picking.

So, I believe we can see why the usage of OCD is ableist here: it isn’t some funny quirk. You are trying to be witty. I get that. But your witty words mean things about my life, parts of my life that I have worked to overcome, and which people I know are still living with daily and that just isn’t funny. It isn’t something we close up in a cupboard and laugh about with friends*. It is a daily struggle for people who absolutely know that they are doing things that are unreasonable to help them cope with the anxiety of things that they also know are unreasonable. We slog through it, grind it down over years, beat it back, and work our asses off to gain chunks and pieces of our lives back from it. That is no joke to us. It is extremely ableist for a person who is in control of their thoughts and actions to appropriate this term to mean that someone is really particular about the way they like things.

So, no, your very tidy friend is not OC. Unless sie is. And then, ha ha, sie probably doesn’t appreciate having hir life poked at.

*OK, you got me. Sometimes we do. But that is our right, not yours.

Television: Bloody Torchwood

19 October, 2009media and pop cultureabuse, family, family dynamics, television, torchwoodAnna

This post is part of a series about representations of disability in movies, television shows, and books. They contain spoilers.

[Originally published as part of Blog Against Disablism Day, May 2009]

If you haven’t seen Torchwood, I’m not entirely sure how to describe it. It’s a Doctor Who spinoff where Captain Jack Harkness and his band of misfits battle to keep the Earth safe from aliens arriving in Cardiff, Wales. There is a Rift in Time and Space that is the Plot Device when needed – aliens pop out of it and, sometimes, people get sucked into it.

It’s also a show where sex and flirtation are part of the plot. Episodes have revolved entirely around sex, such as the one with “sex pollen”, but sexuality, flirtations, and explicit sexual relationships – both same sex and opposite sex – have all been main or side plots. One throw-away line that’s often quoted ’round the fandom is recurring guest star (and ex-lover of Jack’s) Captain John Hart’s comments about how attractive he finds a poodle.

But of course no one in Torchwood would ever flirt with someone with a disability. They’ve never had the chance – no one with a visible disability has ever been on the show.

Oh wait! I tell a lie! Of course someone who has a disability and is deformed has been on the show! I totally forgot. Let me tell you about it.

In Adrift, an episode in late Season 2, Gwen Cooper realises that several people have gone missing in Cardiff, and slowly starts to piece together that they’ve been “taken by the Rift”. The episode focuses on the story of one mother, Nikki Bevan, whose son had gone missing seven months earlier. It shows her grief, and her obsession with finding out what happened to her son. She’s loving and emotionally invested in the search, in contrast to the growing hardness of viewer-standin Gwen.

I’ll skip a lot of summary, which you can read at Wikipedia should you wish.
Continue reading Television: Bloody Torchwood →

Barriers to justice when rapists attack women with disabilities: Australian report

19 October, 2009justice, violenceabuse, australia, communication, justice, law, rape, report, sexual assault, sexual violencelauredhel

[This post was originally published on October 3, 2008 at Hoyden About Town.]

*trigger warnings apply to this post: descriptions of abuse and sexual assault against women with disabilities**

“This young woman [“Caroline”] has cerebral palsy, is wheelchair bound, totally dependent on carers for her personal and daily living activities, and non-verbal. Cognitively very aware, she depends on assisted communication to enable her to communicate … Caroline was sexually assaulted by the taxi driver who picked her up from home and drove her to school …

Caroline uses a communication book to communicate, but her communication book did not have the vocabulary she needed to describe what had happened to her. Her communication book did not include words such as “penis” or “rape”, and police would not allow these words to be added after the incident, because as the police explained, in court this would be seen as leading the witness. (Excerpt from an interview with a support worker cited in Federation of Community Legal Centres, 2006, pp. 7–8).”

Suellen Murray and Anastasia Powell of the Australian Centre for the Study of Sexual Assault have just released a new report: “Sexual assault and adults with a disability enabling recognition, disclosure and a just response” [PDF].

This report starts to fill a huge gap in our knowledge of sexual violence in Australia. Although data in North America has shown that women with disabilities (WWD) are far more likely to experience sexual violence than those without, up until now there has been little or no systematic research into what is happening with WWD in Australia:

Despite being the major national data collection regarding the status and experiences of adults with a disability, the ABS Survey of Disability, Ageing and Carers, does not invite participants to report on their experiences of violence or abuse.

Similarly, the ABS (2006) Personal Safety Survey report, which specifically investigates experiences of violence, does not identify the disability status of participants, and the International Violence Against Women Survey (IVAWS) specifically excluded women with an illness or disability from the sample for the survey (Mouzos & Makkai, 2004).

Therefore, despite evidence that approximately 20% of Australian women, and 6% of men, will experience sexual violence in their lifetime (ABS, 2006), there is no standard national data collection that includes the experiences of sexual violence amongst adults with a disability, or more specifically, the experiences of women with a disability.

There is one smallish South Australian study showing that adults with intellectual disabilities are over ten times more likely to have been sexually assaulted.

Continue reading Barriers to justice when rapists attack women with disabilities: Australian report →

FWD/Forward

FWD (feminists with disabilities) for a way forward