Missing Bodies: Where Are Disabled Women in the Body Positivity Movement?

Line drawing of Anna with devil horns. A speech bubble proclaims RAAAWR

This essay was originally posted on Disability Intersections in 2014. Since then, there has been a lot of (rightful) criticism of body positivity–read Evette Dionne’s “The Fragility of Body Positivity” and Amanda Mull’s “Body Positivity is a Scam” for more. 

Love your body! Stop hating your body; start a revolution! These are just a few of the popular third wave slogans that are fairly well-entrenched as directives, or at least as aspirations, within feminist activism both online and off. There’s Love Your Body Day, sponsored annually by the National Organization for Women (NOW), Love Your Body weeks on various college campuses around North America, and thousands, if not millions, of web pages, graphics, and digital art pieces online that celebrate this theme and encourage women to do so every day. Many liberal feminists have proclaimed that body image –and a matching emphasis on loving your body–is “the” issue for the third wave, as this widely-anthologized essay by Amelia (Amy) Richards explores.

At a basic level, LYB discourse can be a positive thing, and it’s often a good stepping-stone for women who are new to feminist ideas. But it’s this very basic quality that can limit–and does–which kinds of bodies are acceptable to reclaim, have pride in, and even love. A cursory Google search for “love your body” brings up a plethora of images of white, visibly abled, young, cisgender, straight, and/or acceptably thin women encouraging other women to love their own bodies. From this cursory Google search,  I found one image–-the NOW Foundation’s LYB 2009 contest-winning poster designed by Lisa Champ-–that shows a variation on the woman clip-art symbol with a (visible) disability. This single image (now offline!) was more than I was expecting to find, but even with this limited representation, there are still problems in how LYB discourse is built for and around abledness–not least of which is its leaving out of disabled bodies. The complex relationships that many women with disabilities of all kinds have with their bodies are left out as well.

Many of us who have disabilities, chronic illness/pain, or mental health issues actively struggle to love our bodies for a whole host of reasons. Disabled bodies, unhealthy bodies, sick bodies; like other bodies that deviate from the “norm” (that is: white/abled/cis/acceptably thin) that liberal feminism so often reinforces instead of dismantling, our bodies may be accepted by feminism, and other feminists, at a surface level, but when it gets down to the nitty-gritty of what loving non-normative bodies actually entails…well, feminism doesn’t know how to deal with that.

To use a personal example: I look like your “average” youngish white feminist. While I’m not thin, I’ve never had a stranger comment on the overall size of my body, my eating habits in public, or my clothing in the way that people so often comment on the bodies of fat women.  (When I do receive unsolicited advice, curiosity, or commentary from strangers, it is usually about one of three things: my pronounced limp, my cane, or the size of my breasts, although those are stories for another post.)

With the exception of my use of a cane, I have a body that is able to fit in reasonably well when I’m in public. Take away my cane, and I might resemble what an average person might expect a “young feminist” to look like.  Here, too, is where I  depart from all of the well-meaning messages in love your body campaigns. My average appearance and weight are the easiest things to accept about my body, but my disabilities? Less so.

My body itself is in constant pain, and is usually fatigued, thanks to fibromyalgia. I don’t like being in pain all the time; in fact, part of my medical treatment is dedicated to reducing this pain via the use of certain medications. On the other hand, being in pain has shaped my personality in a variety of ways. Having fibromyalgia is not “empowering” in the usual ways that LYB discourse demands of bodily acceptance for women.

Oftentimes, fibromyalgia is horrible. But having it has also made me a fiercer advocate for equal rights for people with all types of disabilities, access to proper pain management for people with chronic pain (many of whom suffer from pain on a daily basis), and related causes. I’ve also been experiencing mysterious and severe allergic reactions for over a decade; these do not happen every day, but when they do, they are usually debilitating.

What qualities are we supposed to love about our bodies, anyway? I am grateful that after an allergic reaction, my face reverts to its “normal,” non-puffy look after 12-24 hours, mostly because the swelling around my eyes often does not allow me to see very clearly (and is also uncomfortably itchy when it happens). I appreciate the fact that during a reaction, my body tries to get rid of whatever’s caused that reaction–but this doesn’t mean that I have to love sitting on the toilet for hours while my intestines empty, and as I become increasingly dehydrated.

LYB discourse instructs us to to love surface things about our bodies: skin, limbs, stomachs, thighs, hair, freckles. . .the list goes on. Or what “our” bodies can do: run, jump, hike, exercise, dance, appear strong; again, it’s a long list. Many bodies can do all of these things and more. But what happens to the bodies that cannot do these things?

Despite having to work around the fibromyalgia to do so, I am able to exercise, but if I decide to go on a two-hour hike on a whim in addition to my carefully planned exercise routine of daily yoga and walking my dog, that addition is going to land me in bed for a few days, and I’ll be in too much pain to move during that time. The call to love your body and celebrate your body, in those instances,  rings hollow to me. I can’t even get out of bed, and you want me to sing kumbayah in celebration of my body? Some days, I’m in terrible pain even though I didn’t do anything to exacerbate my existing pain levels. There are a lot of things that my body cannot do because it’s in near-constant pain, but I’ll be damned if feminism even comes close to acknowledging that, because it never does.

Loving your body at such a surface level is all well and good when you can run and jump and not be bedridden for days afterward, but try explaining what chronic pain feels like, day in and day out, to a healthy love your body-supporting feminist and see how fast she screws up her face, as if to say Why are you telling me this? Feminism has traditionally been terrible at validating women who have complicated relationships with their own bodies, and LYB discourse is merely a pretty pink symptom of feminism’s–and feminists’–inability to accept, or even barely tolerate, any experience of the body that can’t be spun into New Age-type rhetoric having to do with loving oneself against societal odds, or triumphing over the odds. Gender and disability oppression combine into a toxic goop here, and the resulting mix can start to resemble the second-wave anthem “I Am Woman” combined with Supercrip.

During allergic reactions, I hate my guts that keep me confined to bed or to the bathroom, my ballooning face that begins to horribly resemble the moon in A Trip to the Moon, my lungs that feel like they’ve magically shrunken to the size of quarters for no apparent reason. Very often I hate my fibromyalgia-ed muscle fasciae because they make me physically hurt. I hate the sensation of fatigue that makes me feel like I have a tremendously heavy coat on, in addition to the pain. The thing that many feminists do not understand is that these feelings aren’t caused by the media, by fashion magazines, by impossibly thin models and actresses, by advertising-–no, not even by Big Pharma!

LYB grossly oversimplifies the problem of women’s self-hatred, reducing it to a sort of you just need to try harder pseudo-New Age self-improvement goal that pits “women” as a group-–really middle-class, abled, youngish white women–-against oppressive, sexist social and cultural norms, advertising, and so fourth. But it does not teach women to be accepting of sick bodies, disabled bodies, bodies that don’t work perfectly; much of it is merely another air-thin platitude to which to aspire in order to attain self-acceptance. LYB discourse has even been corporatized; look no further than recent Special K cereal ads so bravely proclaiming “NO FAT TALK,” and those insipid Dove soap campaigns that are supposedly so “body-positive” for proof. Such a corporate vision of “positive” body image only offers body acceptance and self-love as goals for a very specific type of body, as scholar Sarah Heiss convincingly argues in this 2011 article from Disability Studies Quarterly.

It’s not so outlandish to ask whose bodies are positioned as worthy of love, of self-acceptance, of peace in LYB discourse. If you already look like the young/white/cis/abled/average-sized woman for whom these messages are designed to appeal,  body acceptance is probably easier for you than it might be for someone who doesn’t fit into one or more of those categories. I am not trying to dismiss the body image struggles of women who do fit into those categories, often through no fault of their own–it’s just that, like a lot of things in mainstream liberal feminism, LYB messages are made to appear inclusive without actually doing that work in any substantial way.

And when this appearance of inclusivity makes disabled, sick, and invisibly ill bodies not appear outright, well, after a while that’s how you end up with healthy, nondisabled feminists who just don’t understand why disability rights are a feminist issue, or who don’t get why women with pain, fatigue or other chronic health issues can’t just love their bodies instead of letting physical or mental problems and/or what the media says about disabled bodies (and the bodies of disabled women) affect them so much. Or they ask how disability pride could possibly exist since disability always creates “suffering,” as Sierra at RH Reality Check does in this article–-because shouldn’t eliminating disability be a goal for a more feminist and pro-choice world? (You can probably guess my answer to that question.)

In their insistence on uncritically parroting and supporting LYB discourse as it currently exists, some feminists inadvertently reinforce the idea that certain bodies are easier to love–and, conveniently, many of them already fit into what the mainstream designates as worthy of acceptance and love. Those with complicated bodies, ill bodies, disabled bodies–and the attendant complex relationships with their own bodies–are often not so lucky.

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Nervous Systems: Chapter 3–Fibromyalgia (and Afterword)

Previously: Chapter 1; Chapter 2

Image descriptions can be found under the read more tag.

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Nervous Systems: Chapter 2–Allergies and Anaphylaxis

Part 1 can be viewed here. Image descriptions can be found under the read more tag.

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Nervous Systems: Chapter 1–Cerebral Palsy

Because Disability Intersections is no more, I will be posting my archived work from that site here. Image descriptions can be found under the read more tag.

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Things That Suck About Having Chronic Pain or, Yet Another Ill-Advised Essay That is Too Complicated For Me to Get Published Someplace Else

 

badpainday

This cartoon I drew in 2009 sums it up.

Most of the time, I am very much for disability pride, but the fact that I have moderate-to-severe chronic pain from fibromyalgia complicates what should be a ride-or-die sort of feeling. If my personal disability pride is a string of rainbow holiday lights, my pain and fatigue is the thing that knots those lights into a ball of awfulness. Untangling the lights takes for-goddamned-ever. Some of the lights are probably burnt out from years of use. In short, if I could get a new string of lights, I would, but for the purposes of this metaphor, I have an imperfect string of lights that is always knotted in impossible configurations and thrown in a box at the back of the garage. (I must pause and give a shout-out to Leah Lakshmi Piepzna-Samarasinha, as her most recent book Care Work: Dreaming Disability Justice provides a ton of food for thought on this very topic.)

There are times that my day or week gets ruined by pain and fatigue, and I can’t do much other than wait for my body to feel better. Often, this will happen when I am on a deadline or have to do something. When it happens, I’ll wake up in bed in the morning and feel like I am in more pain than usual. Sometimes, I will lie in bed and stare at the ceiling, like a dingus, for anywhere from 30 minutes to an hour and a half because the pain is so bad that it has either a.) sucked up all of my motivation to do anything about it (ie: taking medication), or b.) reduced me to lying in bed and staring at the ceiling, because doing anything about it would be useless.

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Bad Sleep, part 1

Photo of a cute Yorkie, with socks on, flopped on her belly

Yes, I am using images of my cute dog for this post instead of images of myself. LOOK AT THAT BARE BELLY. JUST LOOK AT IT.

I have a lifetime of questionable sleep habits. These started in childhood, when—in the third grade—I found myself unable to sleep without leaving my bedroom TV on. Before you leap in with “you had a TV in your bedroom, WTF,” let me assure you that it was only able to play VHS cassettes and not actual network TV. My solution to insomnia at that point was simple: I’d pop in the Disney movie Cool Runnings, turn the volume down extremely low until I could just barely hear it, and watch it until I went to sleep.

The weird part was that it worked for a couple of years. Once it stopped working when I was in the fifth grade, I would regularly read until I fell asleep—until my dad caught me one evening, my face down in a book, drool dripping onto the open pages, with the light still on. After that, I had to figure out ways to calm myself down if I couldn’t sleep, and the most reliable one was what I called “burrito-ing,” where I would spread my blanket on the floor or bed, lie down at one end, and then roll myself into a human burrito. I would roll myself in as tightly as possible, which gave me an unfortunate resemblance to a butterfly pupa. After this, I would hop up and wiggle back into bed—and usually be asleep within fifteen minutes.

From then on, the occasional insomnia that I had was dealt with by staying in bed, looking at the ceiling. I stopped doing the burrito-blanket roll trick when I realized that it was making me sweat buckets while I was asleep, resulting in a very uncomfortable feeling when I woke up. I may have also fallen out of bed a couple of times as a direct consequence of burrito rolling.

The pattern(s) of my insomnia changed when I started experiencing symptoms of fibromyalgia at 19, and was diagnosed at 20. One of the main hallmarks of fibromyalgia is that it can impact your sleep. That’s the polite way of saying that it will totally impact your sleep—depending on its severity, which can vary from patient to patient–drunkenly destroy your sleep patterns with a wrecking ball, then unzip its pants and energetically fuck that wreckage while “We’re Not Gonna Take It” by Twisted Sister plays way too loudly on a nearby portable stereo. So, my once or twice a year bouts of insomnia turned into oh, once every couple of months or so when I will just be awake for no reason at all.

Right now, I have at least one bout of insomnia per month, where I just cannot get to sleep, often regardless of my usual level of tiredness (which is VERY HIGH).

When I thought, a couple of years ago, that working from home would be great for me—and my bad sleep habits–because one can work in one’s pajamas and no outsiders would be the wiser, I certainly did not mean “can also emerge, confused, from a nausea-induced nap at 1 PM on a weekday, in the same crunchy/sweaty pajamas that I have been wearing for the past two days because I have been in too much pain to shower.” WORKING FROM HOME!

I honestly fetishize “perfect sleep” to the point that it concerns me a little. Once in a great while, I will have a couple of hours of sleep that feels like I am floating on a fucking lavender-scented cloud while lying on a cruelty-free feather mattress. Often, I will wake up and go WELL, THAT WAS AWESOME, BUT I’M STILL TIRED AS HELL SO IT’S TIME TO SLEEP IN SOME MORE. It’s inevitable that I will wake up from this enthusiastic nap number two disoriented and confused, with my neck or shoulder bent at an unnatural angle. By the time my brain in that situation goes NEED MEDICATION, NOW, I’ve forgotten about my earlier sleep triumph and have settled back in to my normal disheveled state.

 

Sometimes when I have insomnia, my anxiety-brain will Tarzan-swing in, on a fucking vine, no less, and start yelling at me for ridiculous shit. Picture Nick Nolte doing this as my anxiety-brain and screaming everything below directly into my ear, and you will begin to get an idea of why I find my anxiety-brain so reprehensible:

HEY, are you worrying a bunch about something that you have no control over, like if editors will email you back about those pitches that you were so excited about? DID YOU CHECK TWITTER TODAY, BECAUSE I HAVE NEWS FOR YOU: A BUNCH OF PEOPLE DIED! There, you can worry about that instead of your stupid problems.

Is this “being a writer” thing going to work out for you? Seriously, think about it: IS IT?

I heard a noise! SOMEONE’S TRYING TO BREAK INTO THE HOUSE. (spoiler alert: no one is trying to break into the house)

WHO WANTS TO READ YOUR STUPID ESSAYS ABOUT WHATEVER-THE-FUCK? NAME ONE PERSON.

Did you know that you’re a failure? BECAUSE YOU ARE.

Well, that was annoying. In light of all of this, I have decided to try to change my sleep habits for the better using one of those annoying tip lists from the internet. The results of my experiment(s) are as follows.

TIP: Worry about things BEFORE bed, not after you get into it! EASY FOR YOU TO FUCKING SAY, INTERNET ARTICLE.

TIP: Go to bed at the same time every night! I usually go to bed around 10 PM since it takes me approximately the running time of a pretentious art movie to actually get to sleep, so I already have this one covered.

TIP: Wake up at the same time every day! I already do this, except for when I have insomnia, which I suspect compounds the problem. Our dog, Noodle, will piss all over the wood floors of our apartment if I don’t take her out at the exact same time to pee every morning—this is as good a motivator as any to get me up at the same time every morning.

The time that my body seems to want to get up on weekdays is 9:30 AM. Weekends are a sleep free-for-all unless I have plans.

TIP: Stop drinking caffeine! I love tea too much to actually cut out all of the caffeine that I drink, so…this is not going to work for me as it’s written out. I drink 2 cups of tea per day at most, it’s not always with caffeine, and I don’t know why I am wasting all of this energy justifying the low amount of caffeine that I consume. I am also not a big soda drinker and dislike coffee, so there are two things that I can’t really cut out—unless I want to pat myself on the back already for doing fuck all, which I totally do.

Over the past few weeks, I have had one or two cups caffeinated tea before noon. I have not noticed any differences in my sleep patterns. Not having caffeine after noon is making me feel less weirdly jittery, I guess?

TIP: Don’t do anything in your bedroom other than sleep and other bedroom activities! DO NOT read or look at your phone in bed! The stumbling block for me with this one is that I LOVE READING IN BED. It is one of my top ten or fifteen things that I like to do. The combination of getting to lie down comfortably and read is just the best.

So I know that, right from the outset, that this is going to be a tough one. I’ve been following the “don’t look at screens for at least an hour before bed” tip for a few months, and it seems like it’s helping things along.

I have not been able to stop reading in bed. I am a voracious reader and a terrible sleeper, I guess.

TIP: Don’t take naps! Okay, here is the thing about this tip: for people who have chronic fatigue from an illness (not just OH I GET TIRED SOMETIMES, TOO, abled folks), naps are a necessary evil.

Noodle nap

This little goblin can sleep ANYWHERE.

There are days when I want to do nothing but take naps. This would concern me, but daytime tiredness is a thing when you have fibromyalgia (or its Benadryl-doused cousin, CFS/ME—an illness that I am very glad to not have because dealing with chronic pain is enough). I usually give in to failure so quickly that any normal person would look at my sleep schedule and be like, “um, you should go see a doctor for that hypersomnia, dude.” And I’m like, NO, THIS IS JUST PART OF HAVING A CHRONIC ILLNESS THAT FUCKS YOUR ENTIRE BODY UP, BUDDY.

I want to be in that dead sleep space constantly. There are nights when I’m awake and, after a certain point, get extremely excited about being able to sleep in the next day—which, I’m guessing, exacerbates the whole insomnia thing.

I have tried to avoid napping during the day for a few months, with my successfulness ranging from middling success to NO SUCCESS AT ALL.

In the interim, my snoring got worse, so I had to go get a sleep study done, which is why I’ve divided this piece up into multiple parts.

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My Gallbladder Removal Adventure

Image of a white woman in a hospital setting. She is pointing her phone at a mirror and scowling.

I took this picture shortly after my surgery, which explains the scowl.

I had my gallbladder removed last January. Here is a humorous essay about that experience. There are a ton of racialized disparities in pain management, which I do not cover in this essay. 

It started with a salad.

My mom and I met for lunch on a Friday, at a pizza place that I had never been to, but had chosen because I was ravenously hungry. I ordered a Greek salad. It was not very good, but since I was hungry, I ate it anyway.

I couldn’t eat the next day, save for a scone and some water. It was the salad, I thought. I ordered a salad from a pizza joint. Of course it’s making me sick. At some point, I started throwing up and couldn’t stop. The vomit looked like sand; when I had nothing left in my stomach, clear bile came out of my mouth and streamed into the toilet bowl, making me look like world’s worst fountain. Imagine the famous Belgian “Mannaken Pis” statue, except it was my unlucky self bent over the toilet bowl, with a stream of yellow bile instead of water coming from my mouth.

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