Category Archives: bodies

Fat Hatred and Ableism Collide in Australia

Maz Smyth was rolling along one day in her manual wheelchair, as one does, when her front wheel got caught in a pothole and snapped off. Understandably annoyed by this turn of events, she approached the Toowoomba Regional Council to ask them to fix the pothole and pay the costs associated with fixing her chair.

Neither of these things is particularly unreasonable, wouldn’t you agree? It’s pretty standard for local government to maintain roads, and when I discussed this case with Lauredhel, she pointed out that most councils pay medical expenses when things like this happen, and that awareness of how potholes and other hazards contribute to injuries is on the radar in many regions of Australia. The Council failed to maintain the roadway properly and her chair was damaged as a result. She could have been seriously injured, just as any other wheelchair user, or someone who uses a cane or walker, could have been injured. Potholes are things that need to be fixed, and since the Council failed to take timely action to fix the pothole before someone was injured and/or property damage occurred, Smyth was, I believe, justified in requesting that they pay to repair her chair.

She went to the Council every day for a week, asking that they pay the costs of the repairs. They informed her that she needed to file an official claim and it probably wouldn’t be honoured. She demanded to talk to the Mayor. And then this happened:

[she was] told by a council staff member “perhaps it was your weight that caused the wheelchair to break”.

There are a whole lot of attitudes about fat wheelchair users that get reinforced on a pretty regular basis, like that fat people are lazy, or that using a wheelchair makes you fat. I wish I didn’t encounter them all the time, but I do, and this case was just another instance of casual fat hatred combined with ableism. Wanting to disavow responsibility for damages caused by inaction, the Council staff member decided that the best way to get rid of the Angry Crip would be to tell her that she’s clearly ‘too fat’ and what happened was her fault.

These attitudes are dehumanising, and it comes as no surprise to me to read that Smyth felt ‘downtrodden’ when someone told her this. It was yet another reminder that fat people and wheelchair users don’t belong in society, shouldn’t have equal rights to access public spaces, and should just stay at home and feel sorry for themselves.

A local paper, The Chronicle, decided to cover her story. While they were doing a photoshoot in front of City Hall, the Mayor evidently saw them, raced out of the building, and agreed to pay for the repairs. He said:

“I’m not sure how (the wheelchair was damaged) but we’ve had it fixed to help her out.”

Yeah. She told them how the wheelchair was damaged: She was using it to navigate the street, there was a pothole in the street, and her wheel snapped off. It wasn’t until the presence of the media shamed the Mayor that he decided to take action, and this is something I see with a lot of other cases of discrimination.

A solo voice can be easily ignored. A thousand tiny cuts like this happen all over the world every day and we never find out about them, because a single person usually cannot raise enough of a ruckus. It isn’t until a larger entity like the media, a disability rights organisation, or a famous person steps in that action is taken. Even here, the Mayor didn’t acknowledge her humanity or her right to access. He made it seem like she was getting a favour by having her chair fixed.

Commenters on the article noted that accessibility issues are actually a chronic problem, that there are a number of streets and paths with potholes and other obstacles. Clearly, access has not been made a priority, as illustrated by the fact that while Smyth’s chair was fixed, the pothole was not. The problem here is being treated as individual, rather than structural, and people will continue to experience accessibility problems as a result.

This case could have been treated as an opportunity to hold an accessibility review, to evaluate the town to see how safe and accessible it is, but instead it was treated as yet another opportunity to tell a fat, disabled woman that she didn’t belong in public.

Film Review: HBO’s “Kevorkian” (2010)

Director Matthew Galkin’s documentary Kevorkian (aired on HBO on June 28th; also available on YouTube; ETA: as codeman38 points out below, the YouTube version is, unfortunately, not closed-captioned) is one of those documentaries that I felt nervous about watching, mostly because I was extremely skeptical that it would be anything other than a massive apologia for the man colloquially known as “Dr. Death” in the U.S. news media and among much of the North American public. I was also concerned that my own complicated views on physician-assisted suicide would impact my feelings on whether this documentary was worth the time and emotional energy spent watching it. Like many documentaries, it is a difficult film to watch. It is not uplifting by any means. Parts of it are brutal. Parts of it are frightening. That said, however, I am ultimately glad that I watched this film — not because it “humanizes” Jack Kevorkian or acts as an apologia, but because it deftly explores issues of ethics, law, the power of the media, and legacy.

The entire film is framed by Kevorkian’s ill-fated 2008 bid for a congressional seat representing the state of Michigan —  his platform, as the film shows it, leans heavily on the Ninth Amendment — but his congressional hopes are not the most interesting or thought-provoking part of the film. Almost paradoxically, the most interesting part of this documentary is the fact that Kevorkian does a pretty excellent job of not coming across as particularly sympathetic, something that a viewer might not glean from the film’s trailer.

Here, Kevorkian comes off as one majorly self-aggrandizing guy, and it seems like the director does not have to work very hard to make viewers see that Kevorkian can be difficult to deal with. He often seems so enamored of his own ideas, and his own legacy, that he focuses on these things to the detriment of his friends and allies — and, ultimately, his cause. This becomes most clear in one sequence late in the film, where a longtime supporter of Kevorkian’s publicly disagrees with him at a small town hall-style meeting; Kevorkian responds not by answering the man’s questions regarding the Ninth Amendment, civilly discussing his differences of opinion or why he feels the way that he does, but by yelling at him and then forcefully spitting, “I wish you weren’t here [at this meeting]!” Kevorkian’s behavior during the Thomas Youk case is also ethically questionable, as he videotaped Youk’s death in part with the aim of bringing more publicity and media attention to himself and his cause, even though the videotape would most likely put him (Kevorkian) in prison for murder; as one journalist phrases it, Kevorkian wanted to start a “national debate on [physician-assisted suicide]” by appearing on 60 Minutes with the full tape of Youk’s death. The 60 Minutes footage, both of the Youk tape and Kevorkian’s interview with correspondent Mike Wallace, shown in the film is nothing short of chilling; when Kevorkian intones, “Either they go, or I do,” one may pause to consider that a potential “win” of this particular fight would be built on the bodies of those he has “assisted.”

Unfortunately, no one who opposes Kevorkian’s views on assisted suicide — or his political platform, for that matter (with the exception of the former supporter mentioned above) — gets any screen time whatsoever, and this ends up making the film as a whole seem extremely one-sided. As a viewer, I would have been interested in seeing people who oppose Kevorkian’s method and message, particularly since Kevorkian’s former lawyer simplifies the opposition to him, and physician-assisted suicide in general, by casting any opposition as right-wing religious reactionism versus “enlightenment,” thereby erasing the many disability activists who have criticized Kevorkian and his methods. And while Kevorkian certainly does an admirable job of not coming across as anything other than a guy who overestimates his own importance, or gives any consideration to the reasons why some might oppose his methods or message, the film’s lack of any substantial exploration of opposing view(s) was disappointing.

Despite its flaws, Kevorkian is an interesting, thought-provoking and disturbing documentary. As someone who has complex personal feelings about physician-assisted suicide and its ethics, I am of the opinion that this documentary provides a riveting look at the life of a man whose actions have, for better or worse, managed to galvanize the discussion of physician-assisted suicide, and related issues surrounding medical ethics, the media’s role in medical issues, life, death, and quality of life in the United States.

Commenting Note: This is NOT a thread in which to debate the “rightness” or “wrongness” of physician-assisted suicide in general. Please keep your comments to either the issues discussed here, those brought up by the Kevorkian case/media coverage/related topics, or those illuminated in the film. The entire film is available in 9 parts on YouTube [trigger warning for in-depth discussion of PAS, and accessibility warning for lack of closed-captioning].

Recommended Reading for July 6, 2010

jadelennox (DW): How to fight ableism: some easy steps

So I thought it might be valuable to gather together some ways in which able-bodied people can do something about ableism in the world. Then, next time a person is feeling frustrated about ableism, and is thinking about doing some signal boosting of, say, some crappy thing the writers did on the latest episode of Glee, maybe that individual would have the option of committing to spending the same amount of time doing some more concrete fighting of ableism. Not that I’m critiquing the kind of signal boosting that a lot of us do on the blogosphere! But I’m assuming some people would find utility in hearing about other things they could do that might be useful.

Venus Speaks: Between the Lines

Today I realized something: How my disabilities shape the words I do, and more often don’t, say.

For instance: Whenever anyone uses the word “crippled”, I spot it from a mile away. Context doesn’t matter – it could be in anything – a novel, a newspaper article, a headline. “Recession cripples the American economy”, or “The onslaught cripples the meager defenses” or simply “crippling blow”.

Lauren McGuire at Sociological Images: On Disability and the Public Service Announcement [accessibility warning: embedded content lacks transcripts]

Disability-related PSAs cover a wide range of topics, but generally there are three main categories that the message falls into: how people with disabilities are viewed/treated by society, their value in the job market and society, and what their lives are like. Although these are pretty straightforward messages, there is a great deal of variety in the ways in which these basic messages are presented.

Michael Le at Racialicious: An Open Letter to Racebending.com Detractors

It’s easy to draw comparisons between the Airbender casting and an English actor playing an Irish one, or a Spanish actor playing an Italian actor. But it’s not really the same, and the reason is that Hollywood and media don’t consider whether an actor is Irish or Spanish or English. They think of that actor as “white.” The same is not true of actors who are Asian or Latino, who have to fight over the few roles specifically written for those ethnicities. And a lot of times, even when a role is steeped in Asian culture, even when a role is based on real-life individuals of Asian descent, those roles still go to white actors.

Garland Grey at Tiger Beatdown: CRAWLING OUT OF BED: Internalized Ableism and Privilege

In the two years since I have learned things about my own body. I have learned that once my knees start wobbling, GAME OVER. There is no powering through. There is no mystical internal light of determination that I can draw on – if I keep going my body will fail me. This has been a humiliating lesson to learn. But I can still walk. I can still exercise within limits and these limits expand the more I push them. I have also learned how much privilege I carry. I don’t have chronic insomnia like other members of my family. I’ve never lost a job because of being hospitalized, like my friends with Fibromyalgia. If I’m spending time with someone, and I don’t want to have to go into the whole story I can take an anti-inflammatory and ignore the pain, or blame it on fatigue.

Yes, I have a limp, and no, it’s not really any of your business

I have dealt with disability, in various capacities, for my entire life — this started when I was born three months prematurely and was affected by cerebral palsy (left hemiplegia, if anyone really wants to know) as a result.

I know what you might be thinking: You cannot possibly have CP, Annaham! CP is always severe.  It’s always noticeable to people other than the person who has the condition. CP always sticks out, blah blah blah, insert other sundry stereotypes about CP here (because there seem to be a lot of them).

And you’d be partially right, sort of like how my left leg is partially paralyzed. Oh, people notice my limp. Sometimes, they even point it out to me or concernedly ask about it, as if I am too stupid to notice that one of my legs is too short and that my left foot constantly makes a valiant effort to make up that difference:

“Are you okay? You’re limping.”

“You have a limp.”

“What’s wrong with your foot?”

“Why do you have a limp?”

Now, since I have no obligation to a.) respond, b.) educate these potentially well-meaning folks about my condition, or c.) give a shit, I have developed a coping strategy that works best for me, and it is to ignore these people and/or pretend like they might be talking to someone else. Surprisingly, it usually works, particularly when I do not care about seeming rude.

I don’t know what it is about certain bodies and the fact that some people feel entitled to treat said bodies as if they are public property. This body-as-public-property trope is commonly wielded at people with bodies that, through no fault of theirs, don’t fit the expected “norm” and who may be marginalized because of it: women, non-white people, fat people, trans and genderqueer people, people with disabilities, and others. And woe betide you if you fit more than one — or even several — of these non-normative categories, because then people might feel really entitled to comment on your body or its workings (or non-workings), if these things are at all apparent. In my fairly limited experience, it seems as though certain bodies and their parts constitute some sort of threat to an established order (in my case, this would be the abled order in which “normal” legs or feet do not have limps) that needs to be constantly pointed out and then monitored for the person’s “own good,” whether they are fat, disabled, unexpectedly gendered or not-gendered, or otherwise.

It seems vaguely panopticon-ish, and more than a tad creepily paternal: Hey, she has a limp, but she must not know it! We need to tell her for her own good, so that she knows and can maybe work on correcting it. No matter what the person’s intentions are (because these intentions may be sort of twisted “good samaritan” intentions), that’s the subtextual message that I get when somebody decides to inform me about my limp. Regardless of intentions, this sort of monitoring mostly ends up looking creepy and awkward for all involved. Some “good samaritan” may want to focus on my limp and how out-of-place or weird it looks, but just because I am out in public — limp and all — does not make the way that I move around (when I am not in too much pain to move, that is) any random stranger’s business.

Wii Fit Making Exercise More Accessible?

A black box containing a Wii Fit Plus sits on top of a white box with grey and bright green letters containing a Wii Fit Balance Board.I read recently in an issue of Family Circle Magazine (DON’T JUDGE ME!) (There was a fried chicken recipe I wanted to try out!) that “Japanese research” (could they be any more vague and list any fewer resources?) indicates that using a Wii Fit burns just as many calories as doing moderate exercise. There was no resource listed, nothing. Just a blurb stating that there was some research going on in Japan telling us that the Wii Fit was good for us. I have read on random gaming and parenting boards that there is hubbub about the Wii Fit that it is exercise vs. still being “just a video game”…

Now, I don’t really care about calories as much (or at all) as I do having access to some kind of exercise or movement that I can do without having to leave my house and trek all the way up to the base, or pay for a pricey gym membership, or exhaust my silverware drawer trying to get there, or trying to get through a class of exercise that is of a safe level for my body. Sometimes I need to move. I’ve found our Wii Fit to be small chunks of movement that I can handle when I am ready for some, and unlike a yoga class, something I can stop quickly when I am out of resources. I could go on…but you get the idea. I still prefer a good swim when I have a good day, but we all know that our bodies do not always give us what we want…

Having a Wii Fit in my house has been something useful for me, and I acknowledge that there is quite a bit of privilege there as well. There are disabilities that don’t make the amount of movement required for the Wii Fit accessible at all. It isn’t affordable for everyone (and we had the console already when the balance board was released, but the board is not required for all the games), and the games aren’t released in all countries. Even on a good day I can not always use the board safely, and sometimes my old issues with eating disorders can’t handle some of the game details that include measuring your weight and abilities to balance…

But the Wii Fit has made exercise, and moderate amounts of movement, available to some people for whom it wouldn’t otherwise have been available and accessible.

What are your thoughts, gentle readers? Have any of you used the Wii Fit and been pleased with it, as I have? What are your major complaints with the idea that it is an accessible form of exercise/movement? Love it? Hate it?

Photo Credit: Keith Williamson

A conversation

Recently, I was on the commuter train home. I happened to be reading Susan Schweik’s book Ugly Laws: Disability in Public for a research paper. Two middle-aged women sat down opposite me, and one inquired as to what book I was reading.

Me: It’s a book about 20th-century ugly laws in the U.S.

Woman #1: What’re those?

Me: Oh, they were regulations that prevented people with visible disabilities from panhandling in public, but more generally, they also kept people with disabilities out of the public eye.

Woman #2: Wow, that is so interesting! Are you in school?

Me: Yes, I’m reading this for a grad school paper.

Woman #1: You’re lucky you’re in grad school! The great thing about being in school is that you get to learn about things you might otherwise never learn about.

Me: Yeah, I suppose so.

Woman #1: And…why are you interested in that topic?

Me: I’m interested in feminist theory and disability, and how those things intersect with race, gender and class, and other stuff. That’s the short version, anyway.

Woman #1 [After a long pause]: Of course, I didn’t mean to imply that you are disabled or have a deformity

Me: Uh, okay. [Pause] You can’t see it, but I do have chronic pain.

And the conversation sort of stopped after that. For some reason, I suspect that this is not an uncommon occurrence.

Where There is No Pain

I am staring up at the sky, and I can see the clouds rolling by. I am going the other way. We are giving a nod to one another as we go our way.

The sounds above me are all muffled, of people going on with their lives. I put them out of my mind. They don’t mind me, and I certainly, at this moment, don’t care about them. The sounds around me are different. They are bubbled and thunderous but deadened. They don’t hurt like the stark sounds of being above.

I glide. Above, I ache, I hurt, I am slow. I can barely move forward. But here, I am a Titan. Gods wish they could move like me. This is where I want to be. My muscles move the way I want them to. They ache and scream with the movement, but there is support under every part of my body holding my limbs as I reach.

I turn face down now, tuck my head, and open my eyes. The world is clear, and the sun beams across the floor in ripples, because it isn’t even as strong as I am here. I expel my lungs as I stretch my legs, moving them like scissors, gently. Every gentle motion has so much power. The movements that bring me glances of pity above make me feel like Poseidon’s child here. I was made to use my body here.

I reach, grab, and pull, gently, and glide again. I turn my head (it doesn’t hurt!) and take in a desperate measure of air greedily. My torso turns as if it can just swivel freely. I look down below me, straightening my spine, and see the blue tiled “T” marking my distance. One. Two. Three, and a tuck, and my legs push me back the other way.

I want to stay here. I want to remain where there is no gravity to pull me against myself and bring the pain back. I dread later. I dread even ten minutes from now, because we all have to pay the piper…

The second lap is slower. I always start off too fast. It is always too long between these trips, or too long between seasons (it is never the same indoors). My body can move, but my lungs burn faster. I have to come up more.

Halfway through I have to stop.

My feet (they are tingling now…again) find the ground and my hands reach for the wall.

No. Please.

I fight on. Because I want to stay here.

Where it doesn’t hurt.

The sun beats down on me.

Reach. Grab. Pull.

And it isn’t just the water I grab for. It is time.

Tuck, push, kick.

Glide.

Under here I am alone with my thoughts, with how good it feels.

But my lungs ache for that air, and my body is tired, and my neck strains now when I turn for that air.

As I grasp that wall I am crying.

I need help out.

I am too tired to stand.

I have to rest.

And all I can think about is the next time I can get back in.

Originally Published at random babble… on 10 June 2010

Quoted: Audre Lorde

The supposition that one [group] needs the other’s acquiescence in order to exist prevents both from moving together as self-defined persons toward a common goal. This kind of action is a prevalent error among oppressed peoples. It is based upon the false notion that there is only a limited and particular amount of freedom that must be divided up between us, with the largest and juiciest pieces of liberty going as spoils to the victor or the stronger. So instead of joining together to fight for more, we quarrel between ourselves for a larger slice of the one pie.

— “Scratching the Surface: Some Notes on Barriers to Women and Loving” (1978), in Sister Outsider: Essays and Speeches (The Crossing Press, 1984)

This Is Not Education: Abuse of Autistic Students in Pennsylvania

Content warning: This post contains discussions about abuse of people with disabilities, including physical assault and the use of restraints.

Last week, a major civil rights lawsuit was settled in Pennsylvania when seven families agreed to accept five million United States Dollars to resolve a case they filed against a teacher and her superiors, arguing that she abused the students in her care and her superiors did not take adequate steps to address it. It is the largest case of its kind in history in Pennsylvania, and one of the largest in US history. The teacher has already served six weeks for reckless endangerment; the question here isn’t whether she abused her students or not, but why the district failed to do anything about it.

These students were in elementary school. They were restrained to chairs using duct tape and bungee cords. The teacher stomped on the insoles of their feet, slapped them, pinched them, and pulled their hair. These nonverbal students apparently weren’t provided with communication tools that they could have used to report to their parents, which meant that the teacher was free to lie about the source of the injuries these children experienced while in her classroom. Horrified aides in the classroom reported it, and the teacher was simply reassigned.

The teacher’s defense was that she didn’t have training or support. This may well have been true. However, if that was the case, she should have recused herself from that classroom. Aides confronted her about her classroom behaviour and she said she ‘didn’t know how to stop.’ I’d say that asking to be taken out of that classroom would have been a pretty fucking good way to stop. If the defense to that is ‘well, it would have ended her teaching career,’ then may I suggest that a person who physically abuses children is not fit to be a teacher? That a person who feels that stomping on the insoles of a child’s feet is an appropriate method of ‘discipline’ is clearly not someone who should be in charge of a classroom?

‘We weren’t sure how a jury would view these facts, especially since children were involved,’ an attorney for the defense said, which is a polite way of saying ‘we are well aware that if this case had gone to trial we probably would have paid more than five million.’ The funds are being put in trust for the children, who, among other things, are in need of therapy.

There have been ‘hundreds of cases of alleged abuse and death related to the use of these methods on schoolchildren during the past two decades.’ The House of Representatives actually recently passed a bill addressing this issue, responding to a report from the General Accounting Office documenting abuse of school children across the United States.

The restraint of children with disabilities in school is, unfortunately, not at all notable. It’s a widespread and common practice and I see stories about it in the news practically every week. I’m sure a perusal through the recommended reading archives here would turn up several examples. This doesn’t make it any less vile or wildly inappropriate. I am heartened that legislation has been passed to address the issue, but outlawing abuse isn’t enough, and it’s clear that better training, accountability, and transparency are needed. The reports of those aides shouldn’t have been ignored. That district should not have reassigned the teacher to another classroom.

What is remarkable, and important to note, is that it takes a lot of money to take a case like this to court. Which means that settlements of this kind are only really available to families with at least some money. Even with lawyers willing to volunteer time, taking a case through the courts requires time, energy, the ability to pull supporting materials together, and patience. These things are not options for all families. Especially for parents with disabilities, the barriers to getting to court can be an obstacle so significant that even if they want to fight for their children, they might find it impossible to take a case to court.

Access to justice should not be dictated by social status and economic class, but it often is.

We shouldn’t have to pass laws saying it’s not ok to duct tape children to chairs, but we do.

Recommended Reading for June 1, 2010

fiction_theory (LJ): The internet IS real life

The problem with impeaching someone’s anti-racism based on attendance at a specific march or even public rallies and protests in general is that it assumes that a) attending such events is a more real, valid, and important means of expressing anti-racism than any other means, specifically online and b) that attendance is a feasible option for everyone.

Marching at a rally or attending a protest is all well and good, but it’s not something that is an option for everyone. It’s quite ablist to ask such a question as though the privilege of being able to attend excludes the antiracist work of those who use other venues.

Mattilda at Nobody Passes: Closer

Somewhere between sleep and awake, a new day and last night and tomorrow, like they’re all in a circle around me but I’m somewhere in bed where I can almost read the sentences except they blur away from me, and I keep thinking maybe sleep, maybe this is more sleep except I don’t know if I want more sleep.

thefourthvine (DW): [Meta]: The Audience

I will not bring up my disability, because I don’t talk about it here, except to say that if that part of me appears in a story, it will be as either a clever gimmick (and a chance for a main character to grow as a person) or a sob story (and a chance for a main character to grow as a person). (No, there will never be a main character just like me. Most of the time I think that’s normal, and then I look at, say, SF and think standard-issue straight white guys must have a whole different experience on this issue. How weird would it be, to have basically all mainstream media written for you like that?)

Ian Sample (at The Guardian online): Bone marrow transplants cure mental illness — in mice

The team, led by a Nobel prizewinning geneticist, found that experimental transplants in mice cured them of a disorder in which they groom themselves so excessively they develop bare patches of skin. The condition is similar to a disorder in which people pull their hair out, called trichotillomania.

lustwithwings at sexgenderbody: Do I Owe Everything I am to The Internet?

Despite their lack of a body, my friends are still quite active in the world of Social Networking which acts on the physical world in much the same way things on our mind do. The contents of the Internet affect the physical world through many of the same processes as the contents of a mind, yet the contents of the Internet as a public mind can affect many more minds, and many more bodies than a private mind.