Category Archives: bodies

Body Image & Disability: An Entry Into The Conversation

9 September, 2010autonomy, bodies, gender, i'm right here, introspective, invisibility, life changes, media and pop culture, normality, othering, relationships, representations, sexuality, shamingAnna

A long time ago, I said this:

People with disabilities, especially women, have all the same pressures currently non-disabled people do to look “good enough”, with added bonus of being either non-sexualised or hyper-sexualised, as well as having people infantize them to an incredible degree.

Talking about disability and self-esteem and body image is very difficult for me. People look at me and see a woman without a disability (or a woman with a non-evident one), and I pass. I don’t get the odd looks that a woman of my age (or younger, or older) using a cane or crutches would. I don’t get the pats on the head that women who use wheelchairs report, and I don’t have people leaping out of the way when I’m using a motorized scooter.

But at the same time, women like me are often used as stand-ins for “horrible”. Whether that’s the simple of “she took off her glasses and suddenly she was beautiful!”, or the more complicated of “oh my gosh! the woman I had sex with is actually a crazy person! Quick, let us make many movies about crazy = bunny-boiler = grotesque!”, I’m well aware that women like me are bad, ugly inside, and unacceptable.

These things add a whole other layer to the conversations that many women, feminist and non, have about self esteem and body image. We are all inundated with the constant barrage of White, Long-Haired, Slender (But Not Too Slender), Tall (But Not Too Tall), Unblemished, Healthy-looking, Young women in most advertising and fashion spreads, television shows, movies, and even on our book covers.[1. The last one is so ubiquitous that until just now I didn’t realise that of all the non-fiction books on my desk about disability, only one has an actual image of visibly disabled people on it. Most of them have very plain covers, or abstract-type art on them.]

At the same time, though, poster children and the pity parade are a fairly common image of disabled children – whether with visible or non-evident disabilities – that present people with disabilities as weak, as undesirable, as needing of pity – and always, always, always, as children. Very rarely are images of self-possessed, happy, disabled adults shown, unless they are in one of the “he’s so brave” “look at what she’s overcome” news stories.

I don’t know how this affects other people, or how they deal with it. I know that when Don first got his cane, and then his wheelchair, his self-esteem and image of himself took a hit, and it took a while for me to convince him that yes, I still found him attractive (and I can’t tell you how much I love that wheelchair, since my sexy sexy husband now has energy!). I know for me it would be nice to see images of Actual Crazy Women who aren’t mockeries of women like me, but treated like actual people. It would be nice to see casual fashion spreads with people with evident disabilities in them, rather than only seeing “diversity matters!” posters that include maybe one (male) wheelchair user, usually white.

As I said, I find these things very hard to talk about, because in many ways I don’t even know where to start. While to some extent discussing pop culture and representations there is important, how do we, as individuals, deal with our own self-esteem issues? How do we, as a group, tackle the constant attacks on people with visible disabilities to hide parts of themselves? Make yourself more approachable by putting sparkles on your cane! Soup up your wheelchair and maybe someone will ask you a question! Hide your obvious aid-devices so that they don’t offend people! Cake on make-up so no one can see your scars!

I think there’s so much here to talk about. Please, tell me your thoughts.

“We’re not his kids, we’re adults, and we’re our own people”: The Trouble with the Jerry Lewis Telethon

6 September, 2010activism, autonomy, bodies, disability activism, events, history, i'm right here, identity, invisibility, media and pop culture, news, politics, social attitudes, televisionAnna

Today is Labour Day in Canada and the US, which for many people means the end of the Labour Day Weekend Jerry Lewis Telethon. Wikipedia conveniently describes the Jerry Lewis Telethon so I don’t have to:

The Jerry Lewis MDA Telethon (also known as The Jerry Lewis MDA Labor Day Telethon and The Jerry Lewis Stars Across America MDA Labor Day Telethon) is hosted by actor and comedian, Jerry Lewis to raise money for the Muscular Dystrophy Association (MDA). It has been held annually since 1966. As of 2009, the telethon had raised $2.45 billion since its inception. It is held on Labor Day weekend, starting on the Sunday evening preceding Labor Day and continuing until late Monday afternoon, syndicated to approximately 190 television stations throughout the United States.

On the surface this probably looks like a good thing, but digging a bit deeper: For many people, this is one of the few times they’ll see images of people with disabilities on their t.v. screen (and from a noted authority and beloved celebrity), and the entire thing is one drawn out pity parade.

Since 1991, protesters, including Laura Hershey and Mike Irvine, have tried to raise awareness about the way that the Jerry Lewis Telethon, and Jerry Lewis himself, treat actual adults with disability, and have discussed how these sorts of pity parades affect the public perceptions of people with disability. In 2001, Hershey wrote:

As we in the disability-rights movement keep trying to explain, our biggest problems come not from our physical conditions, but from a society that fails to accommodate us. Lewis’s telethon plays up the problems, without suggesting their sources or solutions. For instance, those sappy vignettes will make much of an “afflicted” person’s inability to wash his own hair, or get herself to the toilet, without any discussion of the urgent need for publicly funded personal assistance, or of the problems posed by the architectural barriers designed right into the layout of most private homes.
Trouble also arises from the fact that thousands of families dealing with disabilities in the U.S. and Canada are denied adequate medical care and equipment – necessities which should be basic human rights, not handouts accompanied by a drum roll and tally.

I’ve written about my disdain for both the Telethon and for the praises Lewis gets despite referring to people with disabilities as “half-persons” who should “stay at home”, and I think this is still an idea that people find very challenging. It’s easier to view these sorts of fund raising telethons as doing Good Things. They are supposed to, after all. That it’s still leaving people with disabilities begging for basic rights, access, and assistance that shouldn’t be necessary in this age of the Americans with Disabilities Act (ADA) and Accessibility for Ontarioans with Disabilities Act (AOWD) isn’t comfortable to think about. That the main use of these funds is for finding a “cure” – by which they mean a pre-natal test – rather than assisting families in purchasing wheelchairs or renovating a home to make it wheelchair accessible, or in assisting people with disabilities in getting support during or immediately after a move seems to surprise people. Your money isn’t going to help actual people with disabilities. It’s going to help the Muscular Dystrophy Association, and to aid Jerry Lewis in his continued insistence that he’s a humanitarian. These are not really the same things.

Many people with disabilities have written about their perceptions of these telethons, and the damage they do, as well as the issues with giving a humanitarian award to a man who treats actual people with disabilities with such disdain. Hershey’s most recent columns are Speaking Out against the MDA Telethon and Laura’s Labor Day Weekend Column. Liz Henry wrote last year about her dose of morning rage regarding the telethon, and there are many links there that highlight the issues around Jerry’s Kids. There’s also the 2007 Blogswarm, Protest Pity, which features more than 35 blog posts about the Telethon and the Protests. You can also read From Poster Child to Protester, which may be the first thing I ever read about the protests and the Issues with Jerry Lewis.

Sometimes, though, the best way to combat the pity parade is to show people with disabilities talking about their lives, and their lived experience. Laura Hershey made this video as part of the “It’s Our Story” Project. Transcript follows:

Transcript:

The ‘It’s Our Story’ titles roll while tinkly piano music plays. White symbols of sign language and a person in a wheelchair flash against the background, which is suggestive of a US flag, with the continental United States in the blue square instead of the usual 50 stars.

The video opens on Laura Hershey, a powerchair user wearing a nasal cannula and glasses. The title of the video is “Jerry’s Kids”, and I believe she’s referring to the group “Jerry’s Orphans”.

Laura: That’s actually a group that was started in Chicago by Mike Irvin, Chris Matthews, and several other people. And I worked with them a lot organziing these protests nationally. I think what the name says is that Jerry Lewis doesn’t have the right to claim us as his quote “kids”, especially as he’s not interested in our perspective. He completely trashes people who question or challenge the telethon approach. He’s attacked us in the press, calling us ungrateful, claiming that he bought us our wheelchairs which is, you know, completely untrue.

You know, whatever ego trip he gets thinking of himself as our saviour, or our daddy, or whatever it is he thinks, we reject that.

We’re not his kids, we’re adults, and we’re our own people. We don’t belong to him.

Pap smears, fat-shaming, and the lithotomy trap

24 August, 2010bodies, feminism, medical practicelauredhel

[X-posted at Hoyden About Town]

So I’m sitting watching the evening news, and on comes a chap telling us women and girls that we oughtta go and get more Pap smears. Then on comes a woman to talk about how Pap screening rates are going down in young women, and to speculate about possible causes for this. The cervical cancer vaccine comes up, as does the “awkwardness” of the test, and our inappropriate embarrassment, which we apparently need to get over.

What I don’t hear addressed in the mainstream media in these discussions of Pap screening? Well, lots of things, like heterosexism, and ignorance about Pap age/sexual experience guidelines, and sexual assault (inside and outside the medical system). However, the one that really stood out in my mind today is also a factor that isn’t going to be fixed by lecturing women. Fatphobic abuse in the medical system.

There has been a fair bit of talk around the feminist traps about some of the other factors, especially the aftermath of sexual assault and its effects on medical interactions. I’m not going to go into that in this post, but it’s a huge, huge issue. What I would like to talk about for a moment, not because it’s more important but just because I have a first-person anecdote, is medical fatphobia.

We know fatphobia kills. In all sorts of ways, in all sorts of settings. And one way in which it can kill is the horrendous tendency of doctors – quite a few doctors, from the stories I hear around the place – to trap women and girls on their backs so that they can shame them while they’re vulnerable. And what they don’t realise, or don’t care about, is just how long-lasting the effects of this can be – and not in a good way.

Medical education materials abound with motherhood statements about ‘Preventive Medicine’ and ‘Lifestyle Intervention’ and ‘Opportunistic Behavioural Education’. General practitioners are exhorted, over and over again, to take any and all opportunities they can to tell people they’re fat. Really, over and over. And OVER. And doctors, labouring under the mistaken impression that this will cause said people to magically become skinny and therefore ‘healthy’, go ahead and do it, then smugly boast about it between themselves, sighing about how no-one ever listens to them. Or, perhaps, under the impression that they can then self-satisfiedly sit back and tick a box on the chart about how they’ve engaged in initial Lifestyle Education, which they learned all about at the last Lap-Band seminar.

Medical education is a powerful, powerful matrix of fat hate, based on the twin premises that telling people they’re fat is (a) helpful and (b) harmless.

So let’s talk about how that plays out in practice:

When I was 19, I had a Pap smear. It was my first. I went to the nearest available doctor, who worked in a setting where they dealt with a late of people in late adolescence and early adulthood. I wasn’t particularly concerned about it; a very little vague unease at the unknown, but no particular trepidation. I didn’t bother taking anyone with me, and I just booked the appointment in between other things I had to do, like med school classes and whatnot. And off I went.

I got my Pill script, had my BP taken, then assumed the position. And the doctor came up into his position, as they do, then stopped.

He looked at my thigh. “Not quite the right spot,” I thought, “but hey, he probably knows what I’m doing more than I do.”

Then he touched my thigh. Around the middle, underneath (in lithotomy position).

Then he JIGGLED IT.

He jiggled my thigh.

And then he grimaced.

And then he did the Pap smear. I was frozen, completely unable (by my inexperience, position, and by general medical disempowerment) to say anything.

And then I fled.

Was I ‘traumatised’? I didn’t have nightmares. I went and got my next Pap smear dutifully, largely because I really didn’t have any choice – no Pap smear, no Pill script. (Ask me about contraceptive hostage-taking! You know you want to!)

But every time I get a Pap smear, every single time, even now more than twenty years later, I see his face. I see him jiggling my thigh with that look of disgust. Every time I lie down and spread my legs for the speculum, I am reminded of exactly how repugnant my body is.

My first impulse is to tell you exactly how fat I wasn’t, back then. To tell you that it wasn’t ok for him to do that because I was physically fit at the time. To tell you at length about how my aerobic capacity was at the 95th centile, that I could do a hundred pushups, that I could swim a k without stopping, that I was beating my fit male friends at squash, that I was getting State medals in my chosen sport. But that’s all irrelevant – because fat-shaming isn’t ok for people who are actually fat any more than it’s ok for people who aren’t. Fat-shaming doesn’t get a pass when it’s limited to people as fat as I am now, or twice as fat as me, or whatever. Fat-shaming isn’t bad because it’s directed at inbetweenies as well as at fat people. Fat-shaming is harmful for EVERYONE. Fat-shaming is not.ok.

As long as some doctors keep seeing lithotomy position as a prime opportunity to ladle on the shame, girls and women are going to avoid Pap smears. So hey, ball’s in your court, medical profession. Fix it. Get your own house in order, and meanwhile, stop telling US we’re the ones doing it wrong.

Just

7 August, 2010blaming, bodies, identitycerebral palsy, fibromyalgia, just world theory, personal, personal storiesAnnaham

My beginning is like this: I was born a full three months before my expected arrival.

I apparently couldn’t wait the whole nine months to come into the world. This early arrival was rife with complications, however: a brain hemorrhage, one collapsed lung (I still have under-armpit scars from the surgery), and, the kicker — cerebral palsy as a result of premature birth. After they found the hemorrhage, the doctors did not expect me to survive.

The hemorrhage stopped on its own. No one could figure out why.

I was in the ICU for a long time after that — in a special plastic case to protect all three pounds of me from hospital elements.

My early birth was unexpected, as was my survival of the mysterious hemorrhage. Both of these things happened for no particular reason.

There are a lot of people who seem to subscribe to the “just-world” theory of events — that is, anyone who has anything bad happen to them has done something to “deserve” it. One sees this attitude thrown around quite a bit in relation to disability and illness — for the smoker who gets lung cancer, for some people who become severely disabled due to accidents, for the “angry” or “repressed” person who is diagnosed with a deadly illness. One sees it in so-called New Age “theories” of illness — that illness is a physical manifestation of bad karma or some other buzz-word often appropriated from a non-Western belief system.

But what of those who are “born this way”? What could they possibly have done in their “past lives” to have disability and/or illness be a feature of their current life? Could I have been, for example, a dictator or Bathory-esque ruler in a past life? I am not one for metaphysics, so I am inclined to think that the answer is no. Besides, were there definitive proof of past lives, it’s not as if every single New Age person could have been a saint in his/her/zie’s past life. So when these folks try to utilize my CP, or my depression, or my fibromyalgia as “proof” that I am or was a bad person and they are good people who inhabit a world of unicorns pooping glitter or somesuch, I tend to get a little upset and/or snarky at their pushing pseudo-enlightened rationales as making any sort of sense.

Disability is not proof of a “just world.” It is not a punishment, nor a tragedy for those of us who live with all sorts of disabilities, or whatever dichotomous thing that various social and cultural attitudes have constructed it as. It is one facet of human experience.

For many of us, disability just exists, or just happens. And for whatever reason, this terrifies many currently-abled people.

Film Review: HBO’s “Kevorkian” (2010)

8 July, 2010autonomy, bodies, deaths, media and pop culture, movies, othering, representations, social attitudes, televisionassisted suicide, documentary, jack kevorkian, medical practice, medicineAnnaham

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].

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

2 July, 2010bodies, i'm right here, identity, normality, othering, small storiesbodies, cerebral palsy, hemiplegia, movement, prideAnnaham

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?

29 June, 2010accessibility, bodies, media and pop culture, technology, video games/gamingaccessibility, disability, disability movement, exercise, games, media and pop culture, pop culture, privilege, video games, Wii FitOuyang Dan

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

FWD/Forward

FWD (feminists with disabilities) for a way forward