I feel weird writing these words, but here they are: I wish I was doing better than I am. I am struggling, and as much as I want to make a joke about it here, I can’t think of any. “Please scream inside your heart” is a good starting point, I guess, as is doomscrolling?

The Coronavirus pandemic is still ravaging the U.S.; of course, President Spray Tan and his fellow “pro-lifers” in the Goose-stepping Old Party have done fuck-all to help anyone but themselves–even though people are suffering on multiple fronts (see also: magically alive haunted doll Jared Kushner’s plan that basically amounted to passive genocide for people in blue states, and senator Rand Paul’s awful choices after he was diagnosed with the virus). Wildfire season (or, as I call it, “remembering that I have asthma season”) just started here in California and has already done a fuck ton of damage to things that conservatives keep telling us are not essential, like NATIONAL PARKS (read: Big Basin). I feel like my cartoon from a couple of years ago where I said that global warming (I don’t call it “climate change,” because screw that) will kill us all is, unfortunately, creeping toward accuracy as the years pass. Thanks, I hate it.

I am angry. I am so angry, but I can’t seem to write about it clearly enough. I am angry that the stupidest people seem to be in charge of making decisions that affect all of us, and they keep making the worst possible decisions. I didn’t vote for Trump because he sucks and was unqualified to run in the first place (the guy who calls himself a great businessman BANKRUPTED A CASINO, HELLO), and now I am tired of having to live in a time where he is one of the most powerful people on Earth–and keeps fucking up–because he was voted in by a bunch of assholes who also suck and are/were nostalgic for a time that never existed in the first place (note: if you think my language here is “divisive,” maybe you shouldn’t read the rest of this piece?). I am tired of seeing the Democrats talk about how horrible Trump is, how “climate change is real” (OBVIOUSLY) but that the Green New Deal is unrealistic, and then doing absolutely fuck-all to change things on a systemic level. 

I am tired of trying to write about the pandemic coherently; as I write this, over 200,000 people have died from COVID-19, and Trump does not care. His followers don’t care. Neither do any of the supposedly “pro-life” conservatives who have thrown their support behind his reelection campaign. When I try to write about the many failures that this administration has on its collective hands, it feels like too much: the monumentally shitty Coronavirus response that will be affecting the U.S. for years, possibly decades, to come; human rights violations all over the damn place (especially in ICE detention centers); simple stupidity.  

Equally disheartening is the feeling that I can’t change things–and no, I don’t want to hear anyone chirp “then VOTE in November!” (yes, I’m going to) or “you should run for office, then!” (like it’s SO EASY for a person with multiple disabilities to just get up and run for office) in response. I feel like I don’t have the words to adequately express how frustrating everything–the pandemic, the current fire season, the ongoing antics of Trump and Co. (some of which are so blatantly fascistic that even humor outlet McSweeney’s published a huge list of them with an “atrocity key” by color!)–continues to be right now.

I am trying to write my way through things–writing “through” some difficult issues is how I process things, after all–but what happens when you can’t find the words? What do you do when it feels like too much? What do you do when your way of coping isn’t enough? 

I don’t know what the answers to those questions might be. But to those of you who say you “didn’t see this coming:” many of us did. When Trump was elected, my first thought (at 2:00 AM the day after the election, while staring at the results on my phone, in the dark): People are going to die because of Trump. Not that I predicted the ICE detention camps, or TWO HUNDRED THOUSAND PEOPLE dead from a highly contagious virus, deaths which could have been prevented had the entire response not been fucked from the start.

Still, the blood is all over Trump and Co.’s collective hands. I hope that they will be unable to wash that blood off; I hope that McConnell, Kushner, and the others try, in an increasingly Lady Macbeth-esque fashion, to wash their hands of all of this–only to realize that they cannot. I hope there are actual consequences for them, although I don’t know the form that those consequences might take.  

I do not feel good or smug about having been right in this situation–just deeply sad and angry. It’s hard, in the sort of fully-encompassing doomscroll that is 2020, to not let my natural cynicism take over my brain again. I don’t think that all humans are motivated by greed and self-interest, although Trump and his cronies certainly are, but all of this is making it tough to not just think “Ok, the U.S. is finished, let’s just throw in the towel, I guess.” 

I have to believe that something better is possible, even if it’s hard to see it or think of it right now.  

Donate to BLM

Donate to the National Black Disability Coalition

NO HUMAN I WILL NOT STOP TRYING TO CRAM MY ENTIRE FOOT INTO MY MOUTH

is my anxiety returning or is it Coronavirus

is it hay fever or Coronavirus

dog won’t stop licking her butthole

tops of arms itching is it allergies

is walton goggins handsome or is my taste in guys weird

how to be nice about not liking someone’s book

feet itching under calluses, is this a red flag for something

how to deal with professional jealousy in a way that does not involve writing in a journal (because i have already done that and it has not worked)

how to give dog subcutaneous fluids at home without traumatizing the dog or the humans doing it

my dog will not stop trying to cram her whole foot in her mouth because it itches; how do i make her stop

is dog sleep apnea a thing

how to deal with being just as bitter and angry as lots of other people, even though you want to be thought of as a person who has their shit together

how to get your shit together

how to avoid a popular person on Twitter when everybody follows them, even though that person sucks

why do my nasal allergies flare up when I put my cpap mask on and lie down to go to sleep

why is jared kushner’s face so punchable

watching the same MST3K episodes over and over: how much is too much

why does everyone love this person even though i hate them

it’s mid-may, why is it raining where i live

can i punch someone for wearing a trump 2020 t-shirt and avoid getting arrested

why is coldplay consistently the fucking worst

why am i so annoyed by conventionally attractive people who post endless instagram photos of themselves doing regular-person things

is there a term for insomnia caused by a chronic pain episode

why do the spoon metaphor and the term “spoonie” send me into a rage

biggest celebrity hot messes of all time

why does the hashtag #blessed make me want to go off the grid forever

why is donald trump the stupidest man alive

when do essential oil blends expire, and can i keep wearing them even if they are expired

how likely is the apocalypse to be caused by donald trump and/or a member of his shitty, good-for-nothing family

how to be happier without resorting to positive thinking or the secret-style bullshit

why are coronavirus conspiracy theorists so gullible

does mike pence call his wife “mother” when they are having sex

why do so many vegan foods have nuts and/or bell peppers (read: two things i am allergic to) in them

how to get your picky-ass dog to EAT SOMETHING

why do i get the wii shop channel music stuck in my head so often

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.

Image descriptions can be found under the read more tag.

PAGE 23 TITLE: KICKING AND SCREAMING: A FIBRO SYMPTOM COMPENDIUM

Panel 1: Small circles denote “tender points” on a person’s upper body.

Text: One of fibromyalgia’s main symptoms is all-body pain, usually called “wide-spread pain.” This descriptor has been derided as “vague” by some, but…

Asterisk: See Berenson 2008.

Panel 2: An old-fashioned carnival barker tries to attract a crowd.

Text, continuing from panel 1: …for many, the pain itself can be described in very specific terms. At times, my pain makes me feel like some sort of circus freak from the sideshows of years past.

Speech bubble, carny barker: COME ONE, COME ALL! You won’t believe your eyes when you see…THE GIRL THAT’S ALWAYS HURTING!

Panel 3: A crowd of onlookers stares at Anna, who sits atop a platform and speaks to the crowd. The carny barker continues his routine.

Text: That’s just me, though.

Speech bubble, carny barker: THRILL at her aches and pains, which have NO KNOWN CAUSE!

Speech bubble, Anna: Yo, anyone have any vicodin?

Panel 4: Anna appears covered in long needles as the crowd watches. One guy says “Wow.”

Speech bubble, barker: Gasp as her symptoms morph unpredictably!

Speech bubble, Anna: I call this one the “Suit of Needles.”

Thought bubble, Anna: OW!

Panel 5: Anna’s limbs contort into unnatural shapes.

Speech bubble, barker: WATCH as she becomes…

Speech bubble, Anna: Totally twisted!

Panel 6: Anna turns into a slug-human hybrid.

Speech bubble, barker: MARVEL at her quick change into…

Speech bubble, Anna: I’m not lazy, just sluggish.

Panel 7: Anna, now back in her everyday form, has a thousand-yard stare.

Text: The ironic part is that most of these symptoms are invisible, at least to people other than the person with the illness.

Speech bubble, Anna: Crap.

PAGE 24 TITLE: THE RELUCTANT NIGHT-OWL (large owls appear in the page margins.)

Panel 1: Anna and her partner, Liam, are in bed, along with their dog, Winston. Liam is asleep; Anna is not.

Text: Not being able to sleep is one of those things that doesn’t sound too bad until it happens to you. Of course, it is a fibro symptom.

Panel 2: Anna grumbles “WTF” as Winston the dog sleeps soundly atop her.

Text: Sometimes, I wake up due to pain. Or it keeps me awake. Whichever position I move into might bring more pain.

Panel 3: Anna, looking defeated, flips through late-night TV reruns.

Speech bubble, TV announcer: Tonight, on “Keeping Up With the Kardashians…”

Text: It is not uncommon for me to try to distract myself…

Panel 4: Anna sits at her kitchen table with a glass of water, looking either thoughtful or frustrated (or both).

Speech bubble, TV: WHAT THE F**K, KIM?!

Text: …only to get back into the “should I or shouldn’t I” cycle of possibly taking my pain medication (prescribed, of course).

Panel 5: Anna crawls across the floor in pain.

Text: I am the sort of person who will try to “just get through” the pain…this is not always beneficial to me, of course.

Speech bubble, TV infomercial: If you call now, we’ll send you a SECOND Pro-Slice, absolutely FREE!

Panel 6: Anna sits on the couch. She looks relieved.

Text: Usually, by the time I DO take medication, all I can think is…

Thought bubble, Anna: Wow, This Old House is fascinating! Oh, I mean…why didn’t I take meds earlier?

PAGE 25 TITLE: SYMPTOMS

Panel 1: Anna enthusiastically chooses her college major.

Text: By the time I began college at UC Davis, I had (naively) thought that my days of life-altering health issues were over.

Speech bubble, Anna: I love Women’s Studies! I think I’ll major in it.

Panel 2: Anna falls asleep in class.

Text: In early 2006—after a fairly intense first year and a half of college—I fell asleep in class one day.

Panel 3: Anna wakes up in class, embarrassed.

Text: This had happened only once before—in high school—so I chalked it up to tiredness and didn’t pay it much mind.

Thought bubble, Anna: Oops.

Panel 4: Anna wakes up the next morning in considerable pain.

Text: A day or two later, I awoke in the early morning feeling as if I’d been working out for a week straight.

Panel 5: Anna makes her bed as she tries to figure out what is going on with her sudden fatigue.

Text: I figured it would pass, and that I was just stressed out.

Speech bubble, Anna: Maybe I’m not getting enough sleep. Am I staying up too late? Not taking enough breaks? Hmm.

Panel 6: Anna sits in the waiting room at the student health center.

Text: After having near-constant muscle pain and fatigue for eight weeks, I went to see my doctor at the student health clinic.

Panel 7: The doctor speaks to Anna after the exam.

Text: She was at a total loss.

Speech bubble, doctor: It could be Chronic Fatigue, but that’s usually a diagnosis of exclusion.

Panel 8: Anna performs administrative tasks at her part-time job.

Text: I tried to resume my normal activities, which included a full course load and a part-time research job.

Thought bubble, Anna: Why am I so TIRED?

PAGE 26

Panel 1: Anna sleeps in.

Text: I was not able to keep up; soon, I found myself way behind in my morning Entomology class, mostly because I felt so tired that getting up for an 8 AM class was too much.

Panel 2: Anna looks bewildered as she tries to study.

Text: The tiredness would continue throughout the day; it felt more akin to the flu than just being sleepy.

Thought bubble, Anna: Oh my god my head weighs 50 pounds. I need a nap.

Panel 3: Anna tries to sit down at the grocery store as her roommate, Nessa, attempts to stop her from doing so.

Text: The pain was worse; even a trip to the grocery store with my roommates wore me out completely.

Speech bubble, Anna: I need to sit down!

Speech bubble, Nessa: Anna, you can’t do this here!

Panel 4: Nessa has called a “house meeting” with all of the roommates. Fellow roommates Usha and Adela look extremely uncomfortable.

Text: One of my roommates in particular lacked any sense of understanding.

Speech bubble, Nessa: WE called this meeting because you are being antisocial.

Speech bubble, Anna: Huh.

Panel 5: Anna is fast asleep (and snoring) in her room, in the middle of the day.

Text: I was usually in too much pain to care about her feelings.

Panel 6: Anna looks confused as she contemplates the amount of pain she is in.

Text: Near the end of the [school] term, I began to suspect that something was seriously wrong.

Speech bubble, Anna: Why do I hurt all over?

Panel 7: The teaching assistant (T.A.) from one of Anna’s classes takes Anna aside just after class.

Text: As it turned out, one T.A. from one of my classes had noticed something “off” as well.

Speech bubble, T.A.: You seem, uh, less peppy than you were at the start of the term…are you okay?

Speech bubble, Anna: I’m fine, but thanks.

Panel 8: Anna gets emotional as she stands alone outside of the classroom after her meeting with the T.A.

Text: Five minutes later…

Thought bubble, Anna: FUCK.

PAGE 27

Panel 1: A referral letter.

Text: After I saw her for the third time in as many weeks, my doctor recommended that I see a local neurologist.

Panel 2: Anna crosses dates off on a wall calendar.

Text: He was booked solid for four months. I waited.

Panel 3: The neurologist tells Anna that he does not know the cause of her symptoms.

Text: The appointment did not turn out in the way that I hoped it might.

Speech bubble, neurologist: I can’t find anything that’s physically wrong with you. Your symptoms just don’t add up.

Panel 4: Anna and her primary care doctor discuss the neurologist’s findings.

Text: My doctor did not know what to tell me.

NEW SECTION TITLE: BREAK

Panel 5: Anna lies on the floor of her apartment in severe pain.

Text: In mid-2006, I experienced a particularly bad pain episode late one night. It felt like a full-body migraine, in a way.

Panel 6: Adela, Anna’s roommate, finds her in fetal position on the floor.

Text: My housemate Adela heard me screaming.

Speech bubble, Adela: Are you okay?

Panel 7: Anna imagines what would happen if she asked Vee to take her to the emergency room; Anna’s thought bubble shows Vee asking “Do you have any idea how much I spent on gas to bring you here?”; imagined Anna squeaks “KILL ME.”

Text: After considering the possible consequences of asking another housemate for a ride to the E.R…

Speech bubble, Anna: NO.

Panel 8: Anna crawls out of the front door of the apartment, with considerable difficulty.

Text: I called 911 and went outside to wait for the ambulance.

PAGE 28

Panel 1: Anna lies on the ground outside, near a bush.

Text: It was nice and cold outside, at least. The EMTs [Emergency Medical Technicians] found me lying under a bush near my apartment.

Panel 2: The EMTs wheel Anna, who is strapped to a wheeled gurney, into an ambulance.

Text: The ambulance crew and the people at the E.R. could not have been nicer. It was weird.

Speech bubble, EMT: We’ll be at the E.R. in no time!

Speech bubble, Anna: Ok.

Panel 3: Anna sits at the intake window at the E.R. and interacts with a staff member.

Text: Even weirder was their apparent willingness to dispense pain medication.

Speech bubble, Anna: EVERYTHING HURTS

Speech bubble, E.R. staff member [cheerfully]: We’ll get you some meds A.S.A.P., okay?

Panel 4: A nurse inserts an intravenous [I.V.] line into Anna’s arm.

Text: I was still fairly squeamish about I.V. needles at that point.

Speech bubble, Anna: Aaaaahh

Speech bubble, nurse: Just a little pinch, here.

Panel 5: Anna looks at the I.V. line, panicked, and then stops panicking suddenly.

Speech bubble, Anna: I WILL NEVER STOP BEING IN PAIN. Wait.

Text: Within a few minutes, something changed.

Panel 6: The medication begins to affect Anna. Several Annas are shown in various stages of happy relief. [Panel has no text.]

Panel 7: Anna realizes that the medication has had an effect.

Thought bubble, Anna: WOW.

Panel 8: Anna is calm and relieved.

Text: For the first time in several months, I felt like I was going to be okay.

PAGE 29 TITLE: PEOPLE IN PAIN

Panel 1: Anna stands in front of a wavy psychedelic background and is overjoyed at not being in pain.

Text: Ironically, going to the E.R. was at that point one of the only times that I felt like my pain was taken seriously at all.

Thought bubble: Wow, I am not in pain AT ALL!

Panel 2: Author Paula Kamen speaks about gender and pain.

Text: As feminist writer Paula Kamen (2005) argues, there is a long history of gender essentialism connected to pain and its treatment (or lack thereof!).

Speech bubble, Paula: Just because women in pain outnumber men in pain does not mean that we are weaker!

Asterisk: This is not a direct quote.

Panel 3: A “male” symbol stands against a white background.

Text: Men are usually expected to be stoic when faced with pain; on the whole, however, they seem to get adequate treatment.

Footnote: Kamen 67-70.

Panel 4: Two images of Anna experiencing pain. The Anna on the left is labeled “Actual Circumstance,” and the Anna on the right is labeled “What Some People Hear.”

Text: Women, meanwhile, are societally encouraged to talk about their problems, but are also taken less seriously when they “complain” of chronic pain.

Speech bubble, Actual Circumstance Anna: EVERYTHING HURTS.

Speech bubble, What Some People Hear Anna: Whine whine whine whine whine

Footnote: Kamen 69; Groopman 2000.

Panel 5: An abstract image of different hands—black and white—reaching up toward the top of the panel.

Text: There are race-based factors, too: people of color are, statistically, the most undertreated when it comes to chronic pain.

Footnote: Dube 2010.

Panel 6: A large image of a dollar sign dominates the panel.

Text: Poor people disproportionately suffer from chronic pain and other disabling health issues.

Footnote: Barker 2005.

Panel 7: Anna rolls her eyes; only the top half of her face is visible.

Text: Contrary to popular belief, chronic (and oftentimes invisible) pain is not just a problem that affects…

Panel 8: Anna looks worried, as she realizes that her diagnosis of fibromyalgia does not really go against the stereotype of people who have been diagnosed with chronic pain.

Text: …middle-class, white women.

Speech bubble, Anna: Whoops.

PAGE 30

Panel 1: Anna angrily reacts as she sees an ad for a pharmaceutical product aimed at fibromyalgia patients.

Text: One might not guess this based on the TV ads for drugs used to treat, say, fibromyalgia.

Speech bubble, TV ad: FYE-BRO-MY-ALL-GEE-AH

Speech bubble, Anna: HOLY SHIT, IT’S NOT A DAMN VEGETABLE!

Panel 2: Text featuring the names of various chronic illnesses—rheumatoid arthritis, MS, complex regional pain syndrome, Lyme disease, chronic fatigue syndrome, and fibromyalgia–fills the frame.

Text: Many chronic and “invisible” health problems have a wide cross-section, but are still stigmatized—particularly when physical pain enters the picture—as “women’s” exclusive complaints.

Panel 3: Anna considers some of the issues with the popular imagination defining these illnesses as only being women’s illnesses.

Text: Illnesses that primarily affect women are usually not viewed as important, or as deserving of something other than scorn, mockery, or non-paternalistic treatment.

Speech bubble, Anna: There also seems to be little attention paid to men and gender-variant people with these conditions, which has problems.

Panel 4: Image of the nonfiction book For Her Own Good.

Text: Feminist writers Barbara Ehrenreich and Deirdre English wrote a book on similar topics in the 1970s. The authors trace medical science’s often tumultuous relationship to women’s bodies and health.

Panel 5: Image that references Charlotte Perkins Gilman’s 1892 short story The Yellow Wallpaper; a woman in a bed (enduring the “rest cure” for hysteria) sees a woman in the wallpaper, struggling to get out.

Text: Unsurprisingly, the medical community’s treatment of women has, in many cases, been a gold mine of sexism. Think of hysteria and neurasthenia, for instance.

Speech bubble, protagonist of The Yellow Wallpaper: A woman in the wallpaper!

Speech bubble, woman in the wallpaper: LET ME OUT!

Panel 6: Various speech bubbles, all containing phrases that people with chronic pain commonly hear: Get over it; Suck it up; Everyone has problems; Have you tried POSITIVE THINKING?

Text: Pain medicine, certainly, has improved over the years—as has the medical community’s attitudes regarding chronic pain—but some attitudes, meanwhile, have proven difficult to shake in mainstream culture.

Panel 7: Image of an equation—woman symbol + pain = ?

Text: Some feminists have uncritically adopted mainstream beliefs about pain, and people in pain.

Panel 8: Anna lies on the ground, disgruntled; it looks as if she has fallen and has been left behind by people unseen. She sarcastically and angrily responds to this.

Text: The notion that women’s chronic pain is not a feminist issue continues to dominate.

Bottom text: In their zeal to celebrate women’s bodies as powerful, some feminists have left women in pain in the figurative dust.

Speech bubble, Anna: OKAAAAY.

PAGE 31 TITLE: IS THE PAINFUL POLITICAL?

Panel 1: Equations featuring the “male” and “female” symbols associated with brain and body, respectively, equals GENDER ESSENTIALISM ALL OF THE TIME.

Text: Biological essentialism—and the connection of “woman” with “body”—has been an issue that feminists have grappled with for a long time.

Panel 2/Footnote: A quote from Price and Shildrick’s essay “Openings on the Body: A Critical Introduction” (1999).

Text and quote As Price and Shildrick write: “Given the putative links between a natural femininity and incapacity [that] worked so efficiently in the interests of patriarchal oppression…many first-wave writers…saw equality as predicated on the need to go beyond biology, to stress instead the potential of women for intellectual achievement regardless of troublesome bodies (3-4).”

Panel 3: Image of a “standard” body.

Text: Many feminist narratives have aimed to reclaim women’s bodies by taking apart such traditional thinking.

Bottom text: The type of body deemed worthy of celebration, however, is still rather limited.

Panel 4: Image of a Super Feminist who stands proudly while wearing a “female” symbol t-shirt and superhero cape. Text marks her as SUPER FEMINIST! Healthy! Pretty! Can do EVERYTHING!

Text: The “powerful” woman’s body is, on the whole, one that conforms to conventionally abled and “attractive” norms…and is usually cisgendered, thin, and white to boot.

Panel 5: Super Feminist condescendingly pats Anna on the head.

Text: In the attempt to reclaim women’s bodies as strong, powerful, and worthy, certain bodies have been ignored or pushed aside.

Speech bubble, Super Feminist: Love your body!

Speech bubble, Anna: My body causes me pain, though…

Panel 6: Anna lies on the ground in pain as the Super Feminist scolds her.

Text: Disabled bodies—and bodies in pain—have often been ignored by “love your body” rhetoric, and by many feminists as well. In the rush to refute biological essentialism, who has been left out, or forgotten?

Speech bubble, Super Feminist: Women’s bodies are STRONG!

Speech bubble, Anna: Uh-huh.

Panel 7: Anna lies on the ground, in extreme pain.

Text: As Susan Wendell (2001) contends, feminism has created its own expectation of an “ideal” body: “Good feminists, like ‘good’ women everywhere, are supposed to give [until] it hurts…” (24-25)

Speech bubble, Anna: It HURTS. Can I, like, take a break now?

Panel 8: Anna sarcastically responds to feminist “skepticism” of chronic pain conditions.

Text: Some feminists have made no bones about their “skepticism” of certain health conditions.

Speech bubble, Anna: FANTASTIC.

PAGE 32

Panel 1: Elaine Showalter talks about Chronic Fatigue Syndrome.

Text: Literary scholar Elaine Showalter, for example, famously dismissed Chronic Fatigue Syndrome as a media-driven “psychogenic epidemic” (117) in her 1997 book Hystories.

Speech bubble, Elaine Showalter: CFS is [indicative of] fin de siècle anxiety.

Panel 2: Anna takes exception to Showalter’s theories.

Text: Her offensive characterization did not stop there: People with CFS are “often hostile to psychiatric or social explanations” of their illness (128).

Speech bubble, Anna: I wonder WHY.

Text: Showalter also writes that “emotions have tremendous power over the body (117)”

Speech bubble, Anna: …nicely implying that CFS is caused by emotional issues.

Panel 3: Anna gestures to a fainting couch in the background of the panel.

Text: Oddly, she [Showalter] also used the term “hysteria” in that book to categorize CFS as a non-illness, and to paint those with it as media-influenced dupes.

Speech bubble, Anna: I think we all know where this is going.

Panel 4: Anna speaks directly to the reader, book in hand.

Speech bubble, Anna: It looks like I’ll be needing that fainting couch real soon, myself, if I have to read more of this drivel.

Panel 5: Anna continues to speak directly to the viewer.

Speech bubble, Anna: I guess using the word “hysteria” to describe a disabling health problem that affects mostly women is totally cool when a feminist does it! Sheesh.

Panel 6: Anna continues to speak.

Speech bubble, Anna: Showalter also equates CFS with fibro (118), even though they are TWO DIFFERENT CONDITIONS!

Panel 7: Anna throws the book to the side.

Speech bubble, Anna: Forget this. I’m not giving her a pass just because she’s an influential feminist.

Panel 8: Anna smiles as she imagines being able to set Hystories on fire using lasers that shoot from her eyes.

Text: Certainly, it is important to look at social and cultural factors of illness and disability; this does not mean that illness and disability are not real.

PAGE 33 TITLE: THE SOCIAL CONSTRUCTION OF…SOMETHING

Panel 1: Names of various academic disciplines: sociology, ethnic studies, women’s and gender studies, queer studies, media studies and theory, history, and cultural studies.

Text: The concept of “social construction” is one that gets utilized frequently in area studies, the social sciences and Humanities.

Panel 2: Anna speaks directly to the reader.

Text: Generally, the phrase “social construct” or “social construction” refers to the idea that many things we take for granted as “normal” and/or “natural…

Speech bubble, Anna: …such as gender roles, race, health, and ability, are actually constituted by social factors.

Panel 3: Images that represent abstract concepts: government, the nuclear family, the media, and cultural values.

Text: In short, things that appear to be “normal” are made so by cultural, social, and political processes and institutions.

Panel 4: Anna holds a sign with the word WHITE and an arrow pointing at herself.

Text: Social constructionism, as a concept, can be very useful in analyzing stuff that we might otherwise brush off as “the way things are.”

Speech bubble, Anna: Race, for example, is not based in biology, but is created and sustained by social relations.

Panel 5: Image of an anti-trans radical feminist.

Text: However, like many theoretical ideas, it can also be misapplied as well.

Speech bubble, radical feminist: Gender is socially constructed—therefore, trans people do not/should not exist!

Bottom text: –Radical feminist talking point

Panel 6: A cheerful liberal feminist.

Text: Unfortunately, some feminists have completely misapplied this concept to illness—particularly those that are not visible—in the race to disavow essentialism and the notion that women are physically inferior to men.

Speech bubble, feminist: You can’t be sick and in pain! Women are strong!

Panel 7: Image of two books, Going Mad by Kate Millet and Women and Madness by Phyllis Chessler

Text: As Andrea Nicki writes in her essay “The Abused Mind,” some radical feminists used a similar strategy with regards to mental illness during the late 1970s and early 1980s.

Footnote text: Truly the gift that keeps on giving!

Panel 8: Abstract image of the human ribcage.

Text: Nicki writes of anorexia, “Those educated in social and cultural factors [of illness] may…not view [an anorectic’s] condition as a debilitating illness, perhaps unsympathetically attributing to her an extremely conformist mentality” (84).

PAGE 34

Panel 1: Anna interacts with a fellow feminist.

Text: You can probably guess why this whole “x as only a social construction” business gives me cause for concern.

Speech bubble, feminist: “Fibromyalgia” is a social construction CREATED by the patriarchy to make women think they’re sick!

Speech bubble, Anna: Oh, I knew that was next.

Panel 2: An invisible hand, meant to be the “hand of the patriarchy” referred to in the panel text, pats Anna on the head.

Text: For one thing, it reduces people—women in particular—with chronic, often debilitating conditions like CFS and fibro to agency-free cultural dupes who are easily led by the hand of patriarchy.

Speech bubble, Anna: EVERYTHING HURTS.

Panel 3: Anna sarcastically screams “FETCH ME MY FAINTING COUCH!”

Text: It also suggests—perhaps inadvertently—that by simply having health conditions that feature pain and fatigue as symptoms, we are somehow letting “the sisterhood” down because we are, accidentally, fulfilling stereotypes of women.

Panel 4: An exhausted Anna lies on a fainting couch as someone points at her.

Text: As Nicki points out (85), this sort of reasoning can easily cross the line into blaming ill people for conditions that are not their fault.

Speech bubble, pointing person: Malingerer! You must GET SOMETHING out of being sick.

Speech bubble, Anna (sarcastic): Okay, thanks for clearing that up.

Thought bubble, Anna: FUCK YOU

Panel 5: Various faces parrot mainstream beliefs about people with chronic pain.

Text: When it comes to mainstream ideas about pain, illness, and fatigue, such thinking is not exactly new, liberatory, or feminist.

Speech bubbles: Hysterical, positive thinking, But what if it IS your fault? Whiner, secondary gain, psychosomatic b.s., stupid, psychological problems, shut up, drug addict, ha ha ha, typical attention-seeking female.

Panel 6: s.e. smith, with cat companion.

Text: Writer s.e. smith sums up the wider public opinion on fibromyalgia thusly:

Speech bubble/quote, s.e.: [Fibro] is often assumed to be a specifically “female” complaint, and it’s laden with the double burden of being a “faker’s disease” in the eyes of the American public, who are apparently incredibly knowledgeable about illnesses[…]

Footnote: See smith 2010.

Panel 7: A New York Times headline from January 14, 2008: “Drug Approved. Is Disease Real?” with an arrow denoting “Actual headline”

Text: The media treatment of chronic pain (and conditions that affect women in greater numbers) has not helped.

Footnote: See Thernstrom 2010; Scarry 1988.

Panel 8: A random dudebro wants to share his opinion.

Top text: If anything, it’s made some people who don’t deal with pain believe that they “know” a lot about it from, say, reading a few articles.

Speech bubble, random dudebro: I know all about pain! I read this article in…

Bottom text: …some are NOT shy about sharing.

PAGE 35 TITLE: Diagnosis

Panel 1: Anna reads at her desk.

Text: Still without any answers on the health front, I attempted to get back to my normal routine.

Panel 2: Anna imagines her neck painfully stretched into a snake-like form as she grimaces.

Text: The pain, however, was still there.

Panel 3: Anna meets with women’s studies professor Dr. Swain during office hours.

Text: One of my Women’s Studies professors called me in for a meeting.

Speech bubble, Anna: You wanted to see me, Dr. Swain?

Speech bubble, Dr. Swain: Anna! Please come in and have a seat.

Panel 4: Dr. Swain asks Anna what’s going on.

Speech bubble, Dr. Swain: I notice you’ve been very quiet in class lately. Is…everything okay?

Panel 5: An upset Anna tells Dr. Swain about her recent health struggles.

Text: It did not take me very long to tell her the whole story.

Panel 6: Dr. Swain hands Anna a business card.

Text: Fortunately for me, she had a contact at the Health Center.

Speech bubble, Dr. Swain: I think she’ll be able to help you find a good doctor!

Panel 7: Anna meets with Dr. Swain’s contact at the Health Center.

Text: A few days later, I met with the director of the campus Health Center; she recommended a skilled Rheumatologist in a neighboring city.

Speech bubble, Health Center Director: I’ll call in a referral today.

Panel 8: Anna nervously waits at the rheumatologist’s office.

Text: After yet another set of blood tests, I went to see the Rheumatologist.

PAGE 36

Panel 1: The doctor examines Anna.

Text: The entire exam took less than 20 minutes.

Speech bubble, doctor: I’m just going to do a test…

Speech bubble, Anna: OW!

Asterisk: This test was repeated on several areas of my body.

Panel 2: The doctor gives Anna a diagnosis.

Text: I was a bit confused when she gave me a diagnosis.

Speech bubble, doctor: You have fibromyalgia.

Speech bubble, Anna: What the hell is that? Seriously, I’ve never heard of it.

Panel 3: Anna’s hands type on a laptop keyboard.

Text: When I got home, I looked it up online.

Panel 4: Anna looks shocked.

Text: The information I read seemed weirdly consistent with my symptoms.

Asterisk: The test, I learned, is called a “tender point” exam; see also Starlanyl and Copeland 2001.

Panel 5: Anna tries not to fall asleep at her desk.

Text: Things that I had thought were just too weird started to make sense…including the fatigue…

Thought bubble, Anna: HAVE TO STUDY. HAVE TO STUDY. TIRED

Panel 6: Anna yelps in pain.

Text: …the pain…and the fact that serious, health-related symptoms seemed to come out of nowhere.

Panel 7: Anna lies in bed and thinks.

Text: When I went to bed that night, I lay awake, unsure as to what it all meant, or if it “meant” anything.

Panel 8: Anna falls asleep and begins to loudly snore.

Text: Mostly, though, I was relieved to know that my issues had a name.

PAGE 37 TITLE: Navel-Gazing

Panel 1: Anna chants “ME ME ME ME ME” at the viewer.

Text: One common criticism of fibromyalgia as a diagnosis is that it supposedly gives ill people a label – one that causes them to “obsessively” focus on themselves and their “aches and pains.”

Footnotes: See Berenson 2008.

Panel 2: We see Anna’s neck twitch as she tries to work.

Text: However, those who have experienced non-acute pain know that it can be incredibly distracting…

Panel 3: Anna massages her neck.

Text: …and, at times, makes focusing on anything BUT the pain itself extremely difficult.

Speech bubble, Anna: WTF?

Panel 4: Anna tries to work through the pain and is unable to do so.

Text: Ignoring pain does not make it go away; in some cases, denying chronic pain may actually make it worse.

Speech bubbles, Anna: Must power through…OW.

Footnote: See Thernstrom 2010.

Panel 5: An exhausted Anna tries to push through her pain.

Text: The expectation that people (footnote) just “push on through” pain has deep cultural roots, but that doesn’t make it right, nor healthy.

Thought bubble, Anna: PUSH PUSH PUSH.

Footnote: Men in particular.

Panel 6: Anna lies on the floor as Winston the Yorkshire Terrier licks her hand.

Text: “Pushing through” can even further invisible-ize chronic pain and people who have it; we are often tasked with pretending that nothing is wrong…even if something hurts.

Thought bubble, Anna: SHIT

Panel 7: Anna and Winston lie in bed. Anna looks unhappy.

Text: With this demand, here again is the specter of the “hysterical” woman who is “too focused” on her own issues to fulfill her socially-expected role.

Panel 8: Anna lies in bed angrily. Winston snores next to her.

Text: That chronic, disabling pain can make women with it distinctly unable to fulfill the role of self-sacrificing, cheerful woman somehow makes women in pain threatening.

Thought bubble, Anna: FUCK IT.

PAGE 38

Panel 1: Anna lugs a single giant rock with great difficulty; the rock metaphorically stands in for Western culture’s expectations of women.

Text: For all of the U.S.’s touting of itself as “progressive,” there are still numerous expectations heaped upon women – among them that women will take care of their [own] needs dead last, and the needs of others first.

Footnote: See Knapp 2002.

Panel 2: Anna sees an able-bodied feminist who balances multiple rocks with ease and with a smile; meanwhile, Anna struggles with her rock.

Text: With few exceptions, mainstream feminism has not quite tackled this social pressure substantially, nor considered it within a disability-centered framework.

Speech bubble, Anna: Really?

Panel 3: A pair of hands holds a rock labeled “care work” as a child, a senior, and a ghost standing in for “the ill” stand in the frame.

Text: Most “feminist” talk of ideal womanhood and care work still assumes that abled women do most of the caretaking for children, seniors, and “the ill.”

Footnote: Hillyer (1993) is one important exception!

Panel 4: The rock that Anna has been struggling to carry rolls over onto her and squishes her.

Text: Many women who deal with invisible, often disabling chronic pain and health conditions themselves actually complicate this binary of caretaker/cared-for.

Speech bubble, Anna: WHOOPS

Panel 5: Image of a woman, contrasting the expectations of ideal feminism and ideal consumerism.

Text: Some of feminism’s ideals, furthermore, rest upon (abled) women’s “liberation” from unpaid (or underpaid) care work. At the same time, we are sold a vision of the superwoman who can, somehow, be all thing

FEMINISM text (left): “Independent,” “liberated,” takes care of business

CONSUMERISM text (right): “Liberated,” but still everything to everyone

Footnote: See Jenny Morris 1996.

Panel 6: A mask decorated to look like Anna’s happy face appears at the bottom of the panel.

Text: Susan Wendell remarks that there is a powerful feminist imperative to “[…] wear the mask of success, strength and enthusiasm and never let it slip to reveal failure, weakness, or doubt.”

Footnote: Wendell 2007 (214).

Panel 7: A hand and wrist wearing a woman-symbol bracelet extends toward the blank space in the rest of the frame, as if prohibiting others from coming in.

Text: With such oddly contradictory mores in place, it’s perhaps not surprising that women with chronic pain, fatigue, and health conditions are both seen as “threatening” and are erased when it is convenient…Not to mention that they can become disenfranchised within feminist circles.

Panel 8: Anna continues to struggle under the rock.

Text: The woman who has good reasons to not be totally “other-focused” is dangerous to an established model of self-sacrificing womanhood.

Speech bubble, Anna: AHHH

PAGE 39 TITLE: If You Can’t See It, Does That Mean It Isn’t “There?” (Spoiler Alert: No)

Panel 1: Anna stands, looking concerned. An arrow to her right points at her, with the caption “Looks normal/healthy (is not)”

Text: One interesting facet of living with a non-apparent pain condition is the issue of forced passing.

Panel 2: Image of a standard cane.

Text: Basically, “passing” means that a marginalized person is able to be read as a member of the majority group and (maybe) escape scrutiny. (My own ability to pass often depends on whether I am using my cane that day.)

Panel 3: A copy of Nella Larsen’s book Passing.

Text: In a racial context, for example, a light-skinned person of color may be able to – or may be read as – pass(ing) for white.

Panel 4: Anna stands among other people at an event.

Text: A person with a non-visible disability may be read as abled because they do not have any of the “traditional” markers of disability.

Thought bubble, Anna: Can they tell?

Panel 5: Anna lies in bed, obviously in a lot of pain.

Text: However, much disability scholarship has left issues around passing – intentional or not – unaddressed, thereby contributing to the perception that invisible disabilities are “not really” disabling.

Speech bubble, Anna: ARE YOU KIDDING ME

Footnote: See Deal 2003.

Panel 6: A man addresses the viewer.

Text: Ethicist N. Ann Davis points out that those with non-visible disabilities are often subjected to a very specific ableist attitude that casts doubt upon the severity of their conditions…and which renders them more invisible.

Speech bubble, man: But you don’t LOOK disabled!

Footnote: See Davis 2005.

Panel 7: Anna talks to a well-dressed person at a party.

Text: I would add that this attitude

Speech bubble, person: You’re not disabled disabled.

Speech bubble, Anna: What?

Thought bubble, Anna: WTF?

Panel 8: Anna’s mom pats her shoulder, which causes Anna discomfort.

Text: If one is read as abled in certain situations by abled people – by relatives, by strangers, by entities such as the government – then claims of pain, fatigue, and disability become easier to dismiss.

Speech bubble, Anna: Ow, Mom.

Speech bubble, mom: My patting you on the shoulder can’t be that painful!

PAGE 40

Panel 1: Anna in bed, in a lot of pain (again).

Text: The attendant expectation that disability be always public is troubling. For example, I tend to stay home when I am in a lot of pain because I am unable to function in public when my pain level is very high.

Panel 2: Anna talks to another person at a party.

Text: The fact that people are not privy to this display of pain or fatigue (or both) has, perhaps not surprisingly, been used against me.

Speech bubble, person: You can’t possibly be in that much pain! People in severe pain can’t do anything!

Speech bubble, Anna: Uh…

Panel 3: Anna speaks directly to the viewer.

Text: It’s a rather binarist mindset: either you perform ability or total, “real” disability in public – and there’s no in-between.

Speech bubble, Anna: There’s also a reliance on being able to “see” what “real” disability is – and this “realness” must measure up to abled people’s expectations.

Panel 4: Two doofuses, Meathead 1 and Meathead 2, talk about how much they hurt after working out.

Text: While I am concerned that a more fluid notion of disability may inspire some abled people to appropriate or mock the identities of PWD for fun…

Speech bubble, Meathead 1: I’m “disabled” too! My joints hurt after I work out.

Speech bubble, Meathead 2: Ha ha

Panel 5: A person scolds Anna, who is crawling through the frame.

Text: …I also believe that the current “I’ll know it [disability] when I see it” model has its limits.

Speech bubble, person: You’re not really disabled – you can still work!

Speech bubble, Anna: Then give me a job.

Panel 6: A quote from Susan Wendell takes up the entire panel.

Text: Forced passing also carries a large element of social control. As Susan Wendell (2007) writes: “People who are suffering are acknowledged in public or social life only if they can ‘pass’ as not suffering too much and do not talk about it…[this] tends to increase [the belief] that deviation from the conventional expectations of cheerful confidence and enthusiasm is unacceptable.”

Footnote: Wendell 215.

Panel 7: Anna looks forlornly at her “happy” mask.

Text: Those of us who “suffer” in part because of our bodies in pain are usually expected to keep quiet and hide it under a mask of cheerfulness, lest we bother others.

Speech bubble, Anna: This old thing again…

PAGE 41

Panel 1: A young white woman with her hair in a ponytail talks to someone out of frame.

Text, with asterisk: Similar attitudes have been leveled at other minorities, regardless of the question of passing.

Asterisk: And sometimes even because of someone’s ability to pass…

Speech bubble, young woman: You’re seeing racism/sexism/bigotry when it isn’t there. I don’t see it, so it must not be a problem.

Panel 2: Various sayings that people use to minimize bigotry and inequality, including: Well, that’s life! How dare you call someone –ist! Just the way things are! OTHER people don’t see it that way. That’s a personal problem.

Text: The circumstances vary, but the message seems eerily similar at times: Don’t make “normal” people uncomfortable. And certainly don’t question “the way things are…” even though it’s socially constructed.

Panel 3: Feminist philosopher Susan Wendell stands next to a copy of her book The Rejected Body: Feminist Philosophical Reflections on Disability. A caption clarifies that Wendell “also has CFS.”

Text: Substantial discussion of physical pain also seems to be missing in much disability theory, although this has been shifting in recent years.

Panel 4: Three stick-figure PWDs: one kneels on the floor in pain, one sits in a wheelchair, and one stands in abject pain.

Text: Many PWDs do not want to add more ammo to the tropes that our bodies are bad, in need of fixing, or are beyond help – and with good reason. However, the opposite tendency – the denial of pain caused by the body — is also dangerous and limiting.

NEW SECTION TITLE: THE PERSONAL V. THE POLITICAL

Panel 5: Four feminists of various ethnicities.

Text: Most feminists would probably agree that certain issues once labeled as “women’s issues” were not taken seriously for that reason.

Panel 6: Image of a raised fist within the classic “woman” symbol.

Text: Even the second-wave slogan “the personal is political” was a snappy response to cultural, social, and political reluctance in taking problems faced by women seriously as problems.

Panel 7: Listing of various feminist issues that were brought to light during the second and third waves of feminism: discrimination, equal pay, reproductive health and justice, household division(s) of labor, violence, sexual harassment, abuse, sexuality, paid work, beauty standards, body image.

Text: A lot of issues thought of today as “core” feminist concerns were conceptualized as purely personal problems, about which women were encouraged to keep quiet.

PAGE 42

Panel 1: A second-wave consciousness-raising group meets.

Text: The explosive popularity of techniques such as consciousness-raising groups during the 1970s was (and is) a testament to how effective some feminist thinking became in changing major cultural patterns.

Panel 2: A “checklist” of some issues with second-wave feminism’s approach to women’s liberation: Focus on issues affecting mostly middle-class white women; Narrow definition of “woman”/”women” as a category; Strict definitions of who is/who is not “dedicated” to the cause based on seemingly arbitrary things.

Text: There were also major problems with some of these approaches, and with second-wave feminism as a whole.

Panel 3: A cheerful white woman tells a black woman, “We are all WOMEN first! Sisterhood!” The black woman responds with “Um…”

Text: The second wave’s ongoing issues with white privilege and racism have been well-covered…

Footnote: See hooks 1988.

Panel 4: A banner hanging over a closed door announces a Women’s Meeting TONIGHT, with “women-born-women ONLY” specified in parentheses.

Text: As have its problems with gender essentialism and transphobia…and, lest we forget, the assumption of an ahistorical, cross-cultural “sisterhood.”

Footnotes: See Stryker 2008 for an overview; see Mohanty 2003.

Panel 5: Anna stands next to a copy of Our Bodies, Ourselves.

Text: Even with the influence of the ‘70s-era women’s health movement, chronic pain and disability as experienced by women has not exactly been taken up by mainstream feminists as a feminist issue.

Speech bubble, Anna: Someone should write Our Pain, Ourselves!

Panel 6: A cheerful feminist able-splains disability.

Text: This seems to mirror wider cultural assumptions that figure pain, illness, and disability as personal problems that don’t have much to do with larger structural issues.

Speech bubble, feminist: If disabled people like Christopher Reeve can overcome their hardships, so can ALL people with disabilities!

Panel 7: Anna thinks about the feminist response to chronic pain. The “woman” symbol, the word OUCH, and a large pill circle above her head.

Text: So if the personal is still political, why has pain been left out of the list of modern “women’s issues?”

Panel 8: The “ghost of disability future” appears, saying “Woooo.”

Text: Besides the woman-as-powerful rhetoric, I think there’s a more base emotion at work in the exclusion of women with pain and disabilities: fear.

Footnote: See Wendell 1989 for a more general discussion of fear of PWDs.

PAGE 43

Panel 1: The ghost of disability future says “You have limits” and “WOOOOOO”

Text: Illness and disability are feared by many abled people, so it’s perhaps no surprise that such a trend is also evident in many abled feminists’ treatment of disabled women.

Panel 2: A man is faced with the ghost of disability future.

Text: Those of us with disabilities, chronic pain and illness tend to remind those without of their own limitations…or their potential future.

Thought bubble, man: It could happen to me!

Speech bubble, ghost: Hello

Footnote: See Wendell 1998.

Panel 3: The ghost removes its sheet to reveal Anna standing there. The man is still ill-at-ease.

Text: Chronic pain also seems to put many abled people face-to-face with the reality that some pain does not go away…

Speech bubble, Anna: Oh, hey!

Speech bubble, man: AHH!

Panel 4: The man holds a large placard promoting new-age book The Secret as the ghost looks on.

Text: …And that there are limits to concepts like the mind’s “control” over the body, the effectiveness of a “positive attitude” in dealing with physical problems, et cetera.

Speech bubble, man: I use positive thinking for my problems…I’m different.

Thought bubble, ghost: Right…

Panel 5: The man turns angrily toward the ghost.

Text: The more that abled people can convince themselves that pain, illness, and disability “can’t” or “won’t” happen to them because of their attitudes or habits…

Speech bubble, man: I’m NOT like you! So…

Panel 6: The man continues angrily addressing the ghost.

Text: …the easier it then becomes to do the mental gymnastics required to disavow disabled people, ill people, and those in pain.

Speech bubble, man (continued from panel 5): It WON’T happen to me!

Panel 7: The ghost, left alone, looks into the distance.

Text: Hearing about the experiences of those in pain, too, makes these realities hard to ignore.

Thought bubble, ghost: I was gonna tell him that it’s NOT a death sentence…oh well.

Panel 8: A feminist puts her hands up to her ears as the ghost approaches her.

Text: Might some abled feminists just not want to hear about fellow women—women who are in pain—in a move similar to the mainstream’s unwillingness to hear about feminist issues?

Speech bubble, ghost: Hey

Speech bubble, feminist: I CAN’T HEAR YOU, LA LA LA LA LA

PAGE 44

NEW SECTION TITLE: PAINFUL LIMITS: ESSENTIALISM, DISABILITY THEORY, AND PAIN

Panel 1: Image of a raised fist reflected in a wheelchair’s wheel.

Text: Both Tobin Seibers (2001) and Susan Wendell (2001) have written about the limitations of the “can-do” model of physical disability.

Footnotes: Seibers, “Disability in Theory…” (2001); Wendell, “Unhealthy Disabled…” (2001).

Panel 2: Anna stands beneath a wire, on which she has hung the names of several illnesses/disabilities: fibromyalgia, chronic fatigue syndrome, rheumatoid arthritis, MS, HIV. Two small birds sit on the wire.

Text: As Wendell argues, contrary to the disability movement’s turn away from the depiction of disabled people as sick or ill, “some people with disabilities are sick, diseased and ill” (18).

Footnote: Wendell, 2001; emphasis in original.

Panel 3: Anna addresses the reader, referring to the text that reads disability =/= pain (automatically).

Text: I believe that confronting this denial of physical pain among disability activists is just as crucial as disentangling the term “disabled” from “sick” or “always ill.”

Disability =/= pain (automatically)

Speech bubble, Anna: But sometimes, it does!

Panel 4: Under a blanket, Anna grits her teeth as she has an attack of pain.

Text: Thus, while not all PWDs are sick or in pain, some are. The resounding silence on issues of chronic pain and illness is something that the feminist and disability movements—oddly—share. Both also rely upon “can-do…”

Speech bubble, Anna: And HOW!

Panel 5: A “super” woman and a “super” PWD stand side-by-side. A text burst labels them as “ABLE TO DO ANYTHING!”

Text, continued from panel 4: …models of the “healthy” PWD and “strong” woman. Both have, for the most part, left these constructions unquestioned.

Panel 6: Curled into fetal position, Anna continues to struggle with her pain.

Text: Discussing pain theory, postmodernity, and their “real life” implications, Seibers writes, “Pain is not a friend to humanity. It is not a secret resource for political change. It is not a well of delight for the individual.”

Speech bubble, Anna: I concur!

Footnote: Seibers 746.

Panel 7: Image of a woman’s dress form.

Text: In many academic circles (mostly in the Humanities), as of late there has arisen a very postmodern romanticization of the supposed malleability of identity.

Footnote: Seibers 744-746.

Panel 8: Image of accessories—a necklace, a boot, and a hat.

Text: A few examples follow: Haraway’s “A Cyborg Manifesto,” Butler’s conception of “performativity” (and its misuses!). Almost without exception, disability is ignored.

Footnote: As are the actual, lived experiences of disabled people.

PAGE 45

Panel 1: A group of people are having fun in a room; one dances in a feather boa and yells the word “PERFORMATIVITY!” for seemingly no reason. Anna looks in on the festivities from outside.

Text: While theorists such as Judith Butler have contributed much to the Humanities, there are some problems with figuring the body as endlessly malleable and/or always awesome.

Speech bubble, Anna: FUCK THAT

Panel 2: A dark void space.

Text: Certain facets of identity, of course, can be used for transgression or performance work, but pain—and chronic physical pain in particular—is often not one of them. Sometimes, it just kind of sucks, and it’s just kind of there.

Panel 3: Anna is bedridden due to pain, in an uncomfortable pose that recalls Francis Bacon’s 1966 painting Lying Figure.

Text: Bodily experiences (including negative ones) are not always things that can be put on or cast off at will; people who experience chronic pain are a reminder of this reality.

Speech bubble, Anna: Performativity? Oh, HELL NO.

Panel 4: Anna, accompanied by her dog, Winston, draws a self-portrait.

Text: Pain is not always a cool, transgressive thing that can be “performed” by the person who has it. For many of us who live with it on a daily basis, it just is.

Speech bubble, Anna: I can draw it some days…but not “perform” it!

Panel 5: Line drawing of a lump of clay.

Text: While I’m not as unconvinced as Seibers is of pain’s political—and artistic—potential, I am still wary of a postmodern mode of thinking that casts pain as just another “performative” bit of identity that can be shaped at will.

Parenthetical text: It’s not a lump of clay!

Panel 6: An old-fashioned doctor with an elaborate mustache and a feminist stand side-by-side in a split panel; they are labeled “Essentialized” and “Romanticized,” respectively.

Text: We have also seen what happens when certain bodies are essentialized…or romanticized.

Speech bubble, doctor: Women’s bodies are WEAK.

Speech bubble, feminist: Women’s bodies are STRONG!

Panel 7: Anna looks through the same window as in panel 1.

Text: In both cases, people—and those in pain, in particular—get left out or trod over.

Speech bubble, Anna: Again?

Panel 8: Anna crawls on the “middle ground,” looking for a more nuanced understanding of women in chronic pain.

Text: My hope is that there’s a middle ground somewhere—and that PWDs play an essential part of bringing it to life.

Speech bubble, Anna: Is this it?

PAGE 46

NEW SECTION TITLE: THE WAY THE WHOLE THING ENDS

Asterisk: With apologies to Gillian Welch for using the title of one of her songs.

Panel 1: Anna sits at her desk drawing.

Text: I have always been terrible at writing conclusions.

Speech bubble, Anna: How am I going to illustrate THAT?

Panel 2: Anna, bewildered, is surrounded by huge phrases commonly used as part of concluding remarks: In the final analysis; in summary; finally; in the future; overall; in this essay, I have argued; this paper has examined; ultimately; and so.

Text: Conclusions have, in fact, been the bane of my writerly existence ever since I could pick up a pencil.

Speech bubble, Anna: I HATE all of these!

Panel 3: Young Anna tries to think of a punch line to a traditional four-panel comic.

Text: Back when I started making comics—at around age 10—I couldn’t stand having to end strips with a punch line!

Panel 4: Anna sits in her living room, reading a book.

Text: The appeal of creative work was—and still is—about the meaty parts of a story, not its end. (Very often, I find that I hate finishing books because the literary amazingness comes to an end!)

Thought bubble, Anna: Nooo…the last ten pages!

Panel 5: Anna sits on her living room chair, deep in thought. Various rough comic pages are tacked onto the wall behind her.

Text: Besides, having to tie up all of a story’s “ends” can feel forced at times.

Thought bubble, Anna: Hmmm.

Panel 6: Anna holds hands with her partner, Liam, a white man with brown hair who wears a pi symbol t-shirt; a small heart symbol is in the space between them. Winston the dog stands nearby, surrounded by flies.

Text: A lot of things have changed since my diagnosis in 2007. Later that year, I met my partner, Liam, on a dating website. (We are still together!)

Panel 7: Anna excitedly screams “HONORS!” while throwing her hands into the air.

Text: I also decided to write an honors thesis for my B.A. [Bachelor of Arts] degree in Women’s Studies.

Panel 8: Anna reads and takes notes for her thesis project in bed. Framed photos and a Tori Amos poster hang on the walls next to her. Winston relaxes next to her feet.

Text: It was a huge undertaking, but it did give me something to focus on other than pain…even if I did do most of it in bed!

PAGE 47

Panel 1: Anna excitedly rushes into her thesis adviser’s office to show off a recently acquired research tool.

Text: It also helped that I was enthusiastic about my chosen subject—the Heaven’s Gate cult, masculinity, and media representation.

Speech bubble, Anna: I have a DVD of thirteen straight hours of HG’s recruitment videos! OH MY GOD.

Speech bubble, Luz (thesis adviser): I’m glad you’re so excited!

Asterisk: Comes with the documentary “Heaven’s Gate: The Day After” (Oneworld Films, 1999).

Panel 2: Anna stands next to a grouping of different “hats” meant to represent the various hats she wears as a student: college student (mortarboard), writing tutor (a trilby/pork pie hybrid with a pencil stuck in one end), feminist (a beanie with the “woman” symbol on it), writer (a plain cap with an exclamation point on it).

Text: Even though I couldn’t handle a full course load with fibro, knowing what I was dealing with made it easier to manage wearing various hats.

Panel 3: Anna lies in bed, in pain, as Liam and Winston comfort her.

Text: Of course, I had—and still had—days where wearing any “hat” other than one befitting a person in pain was impossible.

Speech bubble, Anna: I should be doing more!

Speech bubble, Liam: But you are in pain. It’s okay not to do things when you hurt!

Panel 4: Anna stands under a smiling sun as an empty wheelchair flies across the sky, leaving a rainbow in its wake. Clouds at the other end of the rainbow are labeled with triumph of the human spirit, positive, heartwarming, beauty, inspirational.

Text: It’s an unfortunate result of the “inspirational PWD” figure that so many abled people expect disability narratives to have an “uplifting” ending of some kind.

Speech bubble, Anna: WTF!

Panel 5: Anna stands smiling as she holds a happy rain cloud on a string.

Text: I hate that shit.

Panel 6: Anna addresses the reader directly.

Text: Some might say that I am just jealous of those who can fit their stories into a stock narrative, with appropriately uplifting “beginning,” “middle,” and “end” parts. In some ways, they are (or would be) correct.

Speech bubble, Anna: This action of “fitting” also sometimes reduces nuance and complexity!

Panel 7: Anna looks up at the happy cloud as it passes by.

Text: Chronic pain, by definition, does not end. It just goes on!

Speech bubble, Anna: I guess it can be likened to a cloud that’s always there…

Panel 8: Anna gets out her umbrella as the happy cloud begins to rain droplets.

Text: My fibro has no ending, no inspirational lesson with which I can neatly wrap things up (and perhaps provide the reader with a warm n’ fuzzy feeling, too!).

Speech bubble, cloud: HEY!

Speech bubble, Anna: If we’re going with the weather metaphor…sometimes it rains, sometimes it doesn’t.

PAGE 48

Panel 1: A divided panel shows Anna’s left leg and her swollen face and neck.

Text: The CP does not end. The allergic reactions do not, either.

Footnote: I still get them [allergic reactions] out of nowhere. Fun.

Panel 2: A divided panel shows Anna looking at a pill bottle, then, 30 minutes later (labeled in panel) sitting on the couch with a happy facial expression.

Text: I do get temporary respite from the pain on occasion, thanks to the wonders of prescription drugs…

Thought bubble, Anna: Should I?

Panel 3: Various angry faces and questioning accusations abound as Anna worries, “I am the worst person ever”; the judgment(s) of other people; just take Advil or something; drug-seeking behavior; media concern trolling; guilt; painkiller epidemic; addict; you shouldn’t take those pills…you might get ADDICTED!

Text: …But this often comes with another set of issues.

Footnote: See Parikh 2009.

Panel 4: Anna faces off with another person who is eager to extoll the benefits of positive thinking.

Text: I have commented to close friends that dealing with abled peoples’ responses to my pain is, on the whole, much more difficult than actually dealing with the physical symptoms of fibromyalgia.

Speech bubble, person: Blah blah blah POSITIVE THINKING blah blah blah

Thought bubble, Anna: Could you do me a favor and, like, SHUT UP?

Footnote: For a more thorough explanation of this, see Thernstrom’s The Pain Chronicles (2010).

Panel 5: Anna is tormented by thoughts about her medication use.

Text: Internalized ableism doesn’t help, of course.

Thought bubble, Anna: Does taking this for pain mean I am addicted? I shouldn’t rely on pills so much. Maybe I just need more willpower or something. What must people think of my use of pills?

Spiky speech bubble, Anna: AHHHHH

Panel 6: The words “fibromyalgia,” “anaphylaxis,” and “cerebral palsy” float in the frame, attached to Anna’s fingers by thin threads.

Text: How do you conclude something about a thing that has no conclusion itself?

Speech bubble, Anna: …or multiple things that have no conclusion?

Panel 7: Anna stands in a blank frame and considers the questions brought up by the previous panel.

Text: I suspect it’s a lot like dealing with pain, fatigue, illness, and/or disability. I get this question a lot: “How do you deal with it/go on/get up in the morning/et cetera?”

Text at bottom of frame: You just do.

END OF TEXT

Afterword

A picture may be worth a thousand words because no one word is ever adequate to the excessive expressivity of images.

–Tobin Seibers, from “Words Stare Like a Glass Eye: From Literary to Visual Disability Studies and Back Again” (2004)

One aspect of academic writing, and theory, that has confused me for a long time is the expectation that both will be—and should be—written in a style that is inaccessible to all but a comparatively select few. Part of my reason for choosing a format—the graphic novel—that is not looked at as “serious” was to make some very important theoretical concepts accessible to a non-academic audience. Additionally, my own theoretical project of examining women’s chronic physical pain in contemporary culture relates a lot to my own life experiences, and I have had trouble writing about these experiences “academically enough.”

The potential (and very likely, if we want to be honest) status of my project as “not academic enough” concerns me, to be sure. However, I have tried to write and theorize about my experiences with disability in a more “traditional” format for years, and I have had a nagging suspicion that only writing about these experiences at length leaves something out. With one exception, the often overly formal style of academic writing has, by and large, not worked in my favor. I have written many short-form pieces about disability intended for a general audience; however, my other entrees into theorizing disability in a more academic-type setting proved to be fraught with problems. In 2009, while still at the University of California, Davis, I completed my B.A. thesis on the Heaven’s Gate cult’s mass suicide, masculinity, and media constructions of the normal/abnormal body, and wrote the following as part of my postscript:

…The human body can be—perhaps by necessity—variously embarrassing, bewildering, and beyond control in many ways. Although I have made progress in accepting my various health conditions and dealing with them in the best ways that I know how, the havoc wreaked by these conditions is, at times, incredibly frustrating. The leg that “spazzes” and shakes at inconvenient intervals as a result of mild cerebral palsy, and that I am powerless to stop; the joints, muscles and bones that ache constantly and in different degrees of severity; the fingers that twitch and splay and sometimes press the wrong letters on my laptop keyboard, try as I might to control them; the fibromyalgia’s propensity to make me nearly bedridden at times; my personal feelings of uselessness when–for reasons having to do with extreme pain–I am sometimes unable to complete my academic work on a schedule that resembles a “normal” one for the average college student; my frustration when walking a long distance or climbing up a flight of stairs just seems like too much work; the fact that I am always tired, or hurting, or that I always have fear that my depression will return and do even greater psychic damage than it already has—all of these are things that I deal with on a daily basis, and so of course they affect the work that I do. (63)

Though this is a descriptive passage, looking back, I believe that there is something missing. I can describe the symptoms that I live with daily in the most exacting language possible, but my writing process is such that I usually try to be overly “objective” and “academic” when writing about personal experiences in an academic setting. With cartoons and graphic work, however–a medium in which I tend to feel no such constraints and make no claims to “objectivity” in utilizing it (quite the opposite, in fact)–I have found that I do not feel nearly as much separation from the words that I have written, or from the art that I create. There are ways to represent certain things in art that is exponentially more difficult to do in “straight” writing, and especially academic writing.

The emphasis on an either/or model of theory and practice is of concern to me as well. As Tobin Seibers points out, the current theoretical conception of pain tends to deny, or at least sidestep, the very real and lived physicality of some types of pain: “…pain in current body theory is rarely physical. It is more likely to be based on the pain of guilt or social repression. Society creates pain, but this creation backfires, producing a resource to struggle against society—this is the dominant theoretical conception of pain” (744).

When the pain comes from inside of your body, however, it no longer has a wholly “social” cause that can be easily traced; it is inside you. It is from your body. And, as I hope I have made clear in the graphic novel portion of Nervous Systems, it is— particularly on bad pain days—not a fabulous, transgressive resource that you can then use to fight patriarchy, or capitalism, or Big Pharma, or whatever part of the system happens to be pissing off progressives this week. Sometimes, it confines you to bed, or (horrors) has you relying on medications produced by Big Pharma just to get through the day. Getting up and out into the streets to fight injustice is difficult—sometimes impossible—to do when you are in burning, unending pain that is not caused exclusively by, say, capitalism, but by a nefarious combination of physical issues that are not always within your control, and by the ableism that demands that you should disregard your own pain and fatigue for the good of the progressive “cause,” or because otherwise people will think you are lazy, or that you just aren’t working hard enough to “get better.” Personally, ableism isn’t the only cause of my physical pain and fatigue, but it does not help. One drawback of the pure-theory model, too, is that it tends to remove agency from the people most affected—as Paula Kamen pithily summarizes in her discussion of many feminists’ attitudes toward women’s pain:

In their efforts to counter enemies portraying women as essentially ‘hysterical,’ feminist thinkers have gone too far to the opposite extreme in denying chronic pain’s reality, portraying it as mainly a tool of propaganda against us, a social construct…instead of addressing women’s pain as biologically based, many feminist intellectuals continue to support a seemingly more ‘enlightened’ view: Chronic pain and fatigue are the result of patriarchy (and maybe American capitalism and globalism, too) (168-169).

A pure-theory model also tends to privilege “objectivity” over lived experience without also considering that some of us theorize in order to figure things out, and that theory has to spring from somewhere. When one is writing about personal experience and how it relates to larger social forces, however, objectivity is simply not possible. bell hooks (1994) importantly argues that theory can indeed (and should) come from lived experience: “When our lived experience of theorizing is fundamentally linked to processes of self-recovery, of collective liberation, no gap exists between theory and practice” (61); she cautions, however, that theory “is not inherently healing, liberatory, or revolutionary” (ibid). It can, and has been, used to keep certain people out—people with the “right” qualifications, degrees, and time to study certain theories do, in some sense, have the privilege to be able to pick apart ideas that are, very often, written in a way that makes sense only to people who have these qualifications (hooks 62-63).

Sometimes the opposite happens: questioning theory becomes an exercise in anti-intellectualism, and, as hooks contends, this too contributes to the “false dichotomy between theory and practice” (65). I believe that a lot of theory is useful, interesting, and helpful (I have found Wendell’s, Seibers’, Garland-Thomson’s, and hooks’ work to be both accessible and personally affirming), but even as a “gender studies nerd” who does have some of the “right” qualifications, I have also found much of it to be frustrating, confusing, and weirdly obscuring at times. I often wonder how those who may not have the “correct” qualifications may feel when they come across large walls-of-text which seem specifically designed to speak to people who are not them. I am no supporter of anti-intellectualism or theory-bashing for the sake of it, but on some level, I can (perhaps slightly) imagine how angering it must feel to come across “intelligent” discourse that is meant only for a few, and makes no attempt to reach out to those who might be able to use that theory in their daily lives.

It is for this reason, in part, that I made Nervous Systems a graphic novel. Not only do I excavate and examine portions of my own life and larger cultural/social patterns in order to create theory, but I attempt to make this theory—and some of the theory that came before it, particularly in my use of Wendell, Seibers, and others–accessible by utilizing a format that, while not in wide pedagogical use (yet), has a history as a mass medium. Ironically, in recent years comics and graphic novels have become a new, “hot” form to study in a scholarly way; additionally, “serious” news outlets such as The New York Times have taken notice of the form, and graphic works now regularly appear on many year-end best-of lists. It is, in many ways, beginning to earn the respect of the old- guard literary establishment, despite its background as a “cheap” (and, somewhat hilariously, apparently dangerous, at least during the 1930s) form of entertainment.

Of course, graphic work’s brave new world, so to speak, does not come without caveats. Many successful graphic novels have been created by people who have very similar demographics to those who have traditionally held power in the media—white, heterosexual, able-bodied, middle class or higher men. I think this is changing—albeit slowly—but the still comparative novelty of, for example, women in comics, often gives me pause. People with disabilities working in comics is still a relatively new, and rare, trend. Disabled characters in comics, particularly those produced by mainstream presses, are also a rarity–and even when they are portrayed, they are subject to having important aspects of their stories erased in “reboots.”

I have, I admit, opened myself up to criticism by making myself, certain family members, friends, and other people “characters” in my graphic memoir. The point of this “theoretical memoir” is not to make things up on the fly in order to theorize. The
theory here, in which I utilize a form that has not been taken “seriously” in order to explore something—namely, women’s chronic physical pain—that has often not been taken seriously, either: not by society, not by the medical establishment, not by abled people, not by most feminists.

My theory in Nervous Systems comes from a place, or places, of lived experience. As a person in near-constant physical pain, I cannot, as Felly Nkweto Simmonds summarizes, “remain disembodied” when it comes to creating theory (53). The lines of life experience have traced through me, have left their (invisible) marks on my body. The lines of pain have settled into my bones and muscles; those of fatigue shape my sleep and my waking hours. And so I leave lines on the page, first in pencil, then outlined in black ink: words, images, multiple drawings of my scowling face. The reader sees these lines, reads them, interprets them. I hope that these lines, as they exist on the page, make an impression.

CHAPTER 2 IMAGE DESCRIPTIONS

PAGE 12

Panel 1: Image of a flower.

Text: Until I turned 14, the word “allergy” held a pretty specific meaning. I would get bad hay fever in the spring, but it wasn’t bad enough to really impact my life substantially.

Panel 2: Several people run in terror from a huge, evil anthropomorphic peanut.

Text: I seemed to have escaped the now-common childhood scourge of peanut allergies. (Somewhat ironically, peanut butter was one of my favorite foods as a child.)

Panel 3: A box of “super-costly food item,” with text specifying that it is gluten-free and nut-free.

Text: In the popular imagination, food allergies also seem to conjure up pretty specific class associations.

Panel 4: A blonde “super mom” stands, complete with a cape.

Text: The image of the well-off, overinvolved mom has, in some ways, become shorthand for the “anxious” mother who is hyper-conscious of her kids’ needs and health.

Panel 5: Image of comedian/writer Katie Notopolous.

Text: The stereotype of the wealthy, anxious mom may be an easy one, but actual food allergies exist, and they tend to really suck for those who have them.

Speech bubble, Katie (direct quote): …we all know nut allergies can be serious, but we all secretly suspect that it’s a hypochondriac ‘first-world problem.’

Source note/footnote: Katie Notopolous in the LA Times, 2011. See Netburn 2011.

Panel 6: Image of hipster-y writer/commentator Joel Stein.

Speech bubble, Joel (direct quote): Genes certainly don’t cause 25% of parents to believe that their kids have food allergies. Yuppiedom does.

Text: As a person with food allergies that could kill me, I am skeptical of the pop-psych construction of the “anxious mom” who somehow uses “allergies” to be overprotective of her children.

Parenthetical text: Immune system responses tend to not work by proxy, but try convincing some people of that.

Footnote: See Stein 2009, “Nut Allergies: A Yuppie Invention.”

Panel 7: Anna responds to Katie and Joel, rolling her eyes as she does so.

Text: And, like many other not-immediately-apparent health problems, they [food allergies] are subject to doubts because they are not always visible.

Speech bubble, Anna: Ah, making fun of people with life-threatening health conditions! Sick burns, dudes.

Footnote: Unless the person with the allergy eats that food, of course.

PAGE 13

Panel 1: An album of photos labeled “Vacation Photos: Paris”

Text: Paris, France, 2001: At age 14, I went on a family vacation to the city of lights.

Panel 2: Various photos show Anna and her family in and around Paris—at lunch, at the Eiffel Tower, and at tourist destinations.

Text: We spent most of the week doing normal “tourist” things.

Panel 3: Anna and Patrick sit on a boat, looking bored.

Text: Mid-week, we took a “lock tour” of the Seine. It was over three hours long and featured a lot of water and hydraulics.

Speech bubble, Patrick: Let’s go to the main deck.

Panel 4: Anna and Patrick goof around on the main deck. Anna closes her sweatshirt hood with her drawstring so that only the tip of her nose is visible.

Text: My brother and I spent most of the day goofing off.

Speech bubble, Anna: Look

Speech bubble, Patrick: Hahaha. Let me get a picture!

Panel 5: Photo of Anna in the sweatshirt and completely closed hood, giving the thumbs-up.

Speech bubble, Patrick: Perfect!

Panel 6: Anna lies on the couch, sick and groaning in pain, as her mom asks her a question.

Text: On the third-to-last day of our trip, my mom, dad and brother wanted to go a local flea market. I wasn’t feeling up to it.

Speech bubble, mom: You gonna be okay by yourself?

Speech bubble, Anna: UHHHHH…

Panel 7: Anna lies on the couch.

Text: I spent most of the day resting, leaving the couch twice to eat, and once to go to the bathroom. I hoped I didn’t have the flu.

Panel 8: Anna’s mom asks her if she wants anything to eat.

Text: After the others returned around 5:00, my mom suggested that we go out for dinner. I declined; they left, and I laid back down.

Speech bubble, mom: Can we bring anything back for you to eat?

Speech bubble, Anna: No thanks.

PAGE 14

Panel 1: Anna, sweating, fans herself.

Text: A few minutes later, I began to feel extremely warm.

Panel 2: Anna walks around the apartment.

Text: I headed to the bathroom to try to cool off.

Panel 3: Water runs out of a tap.

Text: For some reason, I thought a cold bath would solve my problem; I turned on the tap and began to disrobe.

Panel 4: Anna’s mom knocks on the closed bathroom door.

Text: My mom had forgotten her jacket, and after getting it, decided to come check on me.

Speech bubble, mom: You okay in there?

Panel 5: The bathroom, from a bird’s eye view. Anna is on the floor, groaning.

Text: She found me almost totally stark naked and on the bathroom floor.

Speech bubble, mom: Oh my god.

Panel 6: Anna’s face is completely swollen, obscuring her eyes.

Text: Then she saw my face.

Speech bubble, mom: We NEED to get you to a hospital.

Speech bubble, Anna: UHHHHH

Panel 7: Anna’s dad and brother look alarmed as she appears.

Text: My dad and brother were shocked, too.

Panel 8: Anna’s dad reads a map, attempting to find a hospital.

Text: Off into the Paris streets we went, in search of a hospital

Speech bubble, dad: It looks like there’s an E.R. [emergency room] up the street…

PAGE 15

Panel 1: Patrick puts Anna’s sweatshirt hood up, then closes the drawstring so that she cannot see her swollen face.

Text: But not before some precautions.

Speech bubble, Patrick: Wait

Panel 2: Patrick pats Anna’s shoulder.

Speech bubble, Anna: Thanks

Speech bubble, Patrick: Don’t look in any mirrors!

Panel 3: A young man sits at the front desk of a convalescent hospital

Text: The hospital “up the street” turned out to be something quite different.

Speech bubble, young man: This is a…convalescent hospital, madame. The medical center is up the street. Do you need taxi?

Panel 4: Anna sits in the emergency waiting room (E.R.), next to a rough-looking guy with a huge knife wound.

Text: After a quick cab ride, we landed at the E.R. near the city’s center. It was after 6 PM on a Saturday night, to boot.

Panel 5: A concerned-looking E.R. nurse signals her colleagues with a quick gesture.

Text: The admitting nurse took one look at me and wordlessly signaled something to the other staff.

Panel 6: Anna panics as a nurse sticks an intravenous (IV) needle in her arm.

Text: In less than 5 minutes, I was whisked away to the back, where more nurses tried to stick an IV in my arm

Speech bubble, Anna: NONONONONONO

Panel 7: Anna’s swelling becomes less severe; she tells mom that she feels better.

Text: Things improved after that, and the swelling started to go down—my to my and mom’s relief.

Speech bubble, Anna: I feel better!

Speech bubble, mom: Good!

Panel 8: Anna and mom wait for the E.R. doctor.

Text: The nurses phoned the staff’s only English-speaking doctor; it was his day off, and it took a while for him to get to the hospital.

PAGE 16

Panel 1: Anna looks concerned as a nurse talks to another patient in the next E.R. cubicle.

Text: There was no shortage of interesting sights, however. The guy in the cubicle next to me kept trying to remove his pants—much to the staff’s annoyance.

Speech bubble, nurse: Monsieur, PLEASE put your pants back on.

Panel 2: Anna’s dad and brother watch a young woman vomit in the waiting room.

Text: My dad and brother also witnessed some interesting things in the lobby.

Panel 3: The doctor talks to Anna’s parents.

Text: Finally, the hospital’s English-speaking doctor came to check on me. After more IV drugs, he spoke with my parents.

Speech bubble, doctor: She has had…how do you say? Allergic reaction.

Panel 4: As Anna sleeps soundly, her brother tries to wake her up.

Text: He [the doctor] also recommended a full round of skin tests back home. Normally, this would have freaked me out, but thanks to all of the IV antihistamines, I was too out of it to care.

Speech bubble, Patrick: Anna, wake up! Hey! [Snort] It’s time to go.

Panel 5: Anna sleeps on the couch while listening to music.

Text: I spent the rest of our trip sleeping on the couch and listening to music.

Panel 6: Anna’s mom looks over the Emergency Room bill.

Text: A few weeks after we came home, the hospital sent us a bill…for $70.

Speech bubble, Anna: Quite a bargain!

Speech bubble, mom: Yeah.

Panel 7: Anna’s best friend, Brigitta, provides her allergist’s business card.

Text: My best friend, Brigitta, recommended the allergist she’d been seeing for her asthma.

Speech bubble, Brigitta: You may have to wait a while to see him.

Speech bubble, Anna: No prob.

Bottom text: The allergist’s wait list was rather long.

Panel 8: Anna and her mom wait in another emergency room; Anna’s face is fully swollen, and she is upset.

Text: In that period of time, I went to the E.R. Again.

PAGE 17

Panel 1: Anna lies on an E.R. bed, face swollen, as an IV drips into her arm vein.

Text: And again.

Speech bubble, Anna: THIS IS BULLSHIT.

Panel 2: Anna and her dad wait in the emergency room again.

Text: And again. It never stopped being scary.

Speech bubble, Anna: AHHHHH

Panel 3: A nurse at the allergist’s office does the “scratch tests” on Anna’s back.

Text: My full “scratch tests” a few months later revealed many sensitivities—including a severe peanut and tree nut allergy that seemed to be the culprits of my E.R. visits.

Speech bubble, Anna: Ow ow ow ow

Panel 4: An assortment of allergy meds, including an epi-pen and several types of antihistamine pills.

Text: I was put on new allergy meds, given a prescription for an Epi-Pen (a self-contained needle to be used in case I stopped breathing), and instructed to take Benadryl with me everywhere I went.

Panel 5: Anna looks sadly at a plate of cookies. The cookies have a sign near them that reads “Cookies! Sugar or peanut butter.”

Text: I studiously avoided peanuts and tree nuts; anything on the same plate as those items became a no for me.

Panel 6: The carpet is removed from Anna’s room.

Text: When I kept having attacks, my parents suspected a dust problem; I moved to another room in our house. We also got rid of my new room’s carpeting.

Panel 7: Anna is frustrated during yet another allergy attack.

Text: The attacks still happened, but a bit less frequently.

Speech bubble, Anna: DAMMIT

Panel 8: Anna looks forlornly at a B-minus grade on an essay.

Text: I began to feel even worse when I could no longer pull off a 4-point-0 GPA [grade point average], thanks in no small part to my time spent in the E.R.

Speech bubbles, Anna: NO! A B-minus?

PAGE 18

Panel 1: Image of a two-headed Anna, with one head representing depression and one representing anxiety.

Text: I was also depressed, which did not help. My anxiety got to the point where my school counselor suggested that independent study might be a better fit for me.

Thought bubble, depressed head: What’s the point?

Thought bubble, anxious head: I HAVE TO BE PERFECT.

Panel 2: A shocked-looking Anna screams NOOOOOOOOO in response to an unknown stressor.

Text: I don’t mean to imply that my attacks caused my depression or anxiety—or vice versa—but having these health problems did not help my stress level.

Panel 3: Anna meets with her school counselor.

Text: In my junior year of high school, I ended up transferring from “regular” 8 to 3 public school to our district’s independent study program.

Speech bubble, counselor: I think independent study will be a good fit for you!

Speech bubble, Anna: Great!

Panel 4: Anna is in the early stages of another allergic reaction.

Text: I still had attacks out of nowhere, but I found that, with my new schedule, I was able to stay a little calmer when I did have a medical problem.

Thought bubble, Anna: Am I having another one? At least I don’t have class tomorrow.

Panel 5: Anna and her mom wait in the Emergency Room. Anna’s face is extremely swollen.

Text: Feeling less anxious on the school front helped, but at times I also felt the need to be stoic for the benefit of others.

Speech bubble, Anna: I’m scared!

Speech bubble, mom: You’re gonna be okay, sweetie.

Panel 6: Anna reminds herself to breathe as her face swells up yet again.

Text: Sometimes, I was able to remain fairly calm and detach from my symptoms a bit, which included:

Panel 7: A closed restroom door.

Text: Gastrointestinal trouble (this was often the first sign of an attack)

Speech bubble, Anna: FUCK

Panel 8: A pair of hands clasps around a heart, in front of a background of high flames.

Text: Breathing problems, during which my lungs would begin to itch—creating a sort of “on fire” feeling…

PAGE 19

Panel 1: Anna looks frightened as she begins to break out in hives.

Text: Swelling of the eyes and throat—and hives on my arms, neck, and chest (which often turn my skin a lovely shade of salmon pink).

Panel 2: Anna waits in the ER, accompanied by her friend Lindsey.

Text: Even now, many of my friends express surprise at how calm I remain during an attack. [My friend Lindsey, for example, has taken me to the ER several times.]

Speech bubble, Lindsey: How are you this calm?

Bottom text: I still don’t know the answer to that.

NEW SECTION TITLE: MANIPULATIVE

Panel 3: A landline phone rings.

Text: When I was 16, a good friend of my mom’s called her one day.

Panel 4: The family friend tries to massage Anna’s shoulders; Anna squirms in discomfort.

Text: Interestingly, this woman and I had something of a mildly adversarial relationship.

Speech bubble, family friend: I’m trying to give you a massage! Just RELAX.

Speech bubble, Anna: That HURTS.

Bottom text: She was really into New Age, and also seemed to have a singular talent for making me very physically uncomfortable.

Panel 5: The friend, looking fretful, speaks to Anna’s mom over the phone.

Text: What she told my mom during the phone call was, for all intents and purposes, consistent with New Age b.s.

Speech bubble, friend: Robin! I had a vision last night that Anna was FAKING her allergy attacks to MANIPULATE you!

Footnote: See Ehrenreich 2010; Salerno 2008.

Panel 6: Robin fires back over the phone.

Text: My mom was not impressed.

Speech bubble, Robin: How DARE you? I mean, what the fuck? We are NOT having this conversation.

Panel 7: Anna asks Robin if anything is wrong.

Speech bubble, Anna: Are you okay? I heard yelling.

Speech bubble, Robin: Yeah…

Panel 8: Anna looks shocked as her mom recounts the phone conversation.

Text: Shortly thereafter, she told me what had happened.

Speech bubble, Robin: You don’t have to talk to her if she calls back.

PAGE 20

Panel 1: Anna stares at the phone angrily.

Text: I spent the next half-hour staring daggers at the phone.

Speech bubble, Anna: BITCH. If she calls back, she’ll be sorry.

Bottom text: She didn’t call back. I sat with my rage, rehearsing snappy comebacks.

Panel 2: Anna responds, frustrated, to a random person’s invasive questions about her allergies.

Text: This rage would, in time, find its way into my interactions with “skeptical” healthy people who would give me the third degree about my allergies.

Speech bubble with asterisk, random dude bro: But how do you KNOW that you have allergies? Do they, like, test for that stuff? I have never heard of that, so it might not even exist…you could be lying, right?

Speech bubble, Anna: SHUT UP! You know nothing, so STOP TALKING.

Asterisk: Based on an actual interaction. Really. If only I said this all of the time.

Panel 3: Random dude bro gives Anna grief about her response.

Text: Predictably, some of them get pissed of f when I fail to respond to their questions in a “nice” way.

Speech bubble, dude bro: But I was just curious! God.

Speech bubble, Anna: WE. ARE. DONE.

Panel 4: A drawing of Anna is divided in half; one half looks swollen and miserable from an allergic reaction, and one looks “normal.” The words NOW YOU SEE IT, NOW YOU DON’T surround the image.

Text: I am hesitant to call allergies and near-fatal allergic reactions 100% “feminist” issues, but the ways people respond to these invisible or not-always-visible health conditions also has much to do with gender.

Panel 5: Several pairs of eyes stare at Anna, who responds “Oh, for fuck’s sake, not again.”

Text: As mentioned earlier, the bodies of people who are “abnormal” in some way—or who are marked as such—are often treated like curiosities, or public property.

Panel 6: Individual speech bubbles with invasive questions take up all of the space in the panel.

Text: Members of minority groups, too, are usually expected to comply when questions—no matter how personal—are wielded at them by members of majority groups.

Speech bubble questions: What’s wrong with your foot?

Where are you from?

Why would you be proud of being [in x group]?

Why would you use that pronoun? Can’t you just pick male or female instead of making up words?

Panel 7: Speech bubbles with invasive questions and comments—this time having to do with severe allergies–take up all of the space in the panel.

Text: I have never been able to just say “I have severe food allergies” and leave it at that. People always want to comment. Everybody seems to have something to say!

Speech bubble questions and comments: If I had to not eat peanut butter, I would just DIE!

Food “allergies” are SO over-diagnosed these days!

But how do you know FOR SURE that you’re allergic?

Aren’t “allergies” just code for “picky” eaters?

How much could you eat before you’d swell up?

PAGE 21

Panel 1: Anna looks annoyed at yet another random person’s commentary on her allergies.

Text: I try to be polite; I usually am, but just barely.

Person’s commentary: SO WHEN WERE YOU DIAGNOSED? I KNEW THIS GUY WHO KNEW A KID WHO WAS SO ALLERGIC TO PEANUTS THAT HE COULDN’T EVEN GO ON AIRPLANES. THE KID’S MOM WAS ALWAYS SO CONCERNED ABOUT PEANUTS, SHE ACTED KIND OF CRAZY…

Panel 2: Anna thinks about the “super mom” and her kid from earlier in the chapter. The mom looks concerned as the kid’s face swells up from an allergic reaction.

Text: The Anxious Mother as making her kids allergic by proxy trope also interests me from a feminist perspective.

Speech bubble, concerned mom: It must be PEANUTS!

Speech bubble, swollen kid: Must be peanuts.

Panel 3: The super/anxious mom looks askance.

Text: Western culture seems particularly adept at blaming mothers for everything that might—or does—go “wrong” with their kids.

Pop-up text: IT’S THE MOTHER’S FAULT!

Panel 4: The mom tries to surmount giant boulders, each labeled with an expectation that culture foists upon “good enough” moms. The boulders read: Kid needs to be perfect. Push kid to do well, but not too much! Good behavior. Knowing what child needs at all times. Keeping kid engaged at all times. Self-esteem. “Head starts” on math, reading, etc. Preparation for school and learning. Parental encouragement. Staying at home with kids. Love. Enrichment programs. “Proper” diet; health. After-school activities.

Text: Simultaneously, heaps upon heaps of expectations are piled upon [sic] moms; these expectations are often rooted in white and middle-class values surrounding the family.

Footnote: See Quart 2007.

Panel 5: Image of a fainting couch, with an arrow and text denoting a “fainting couch for the 21^st century!”

Text: The over-attached, “hysterical” mom trope also connects to an older stereotype: the “hysterical” woman, who is so focused on herself and her problems that she is immobilized.

Panel 6: A dual image of the “hysterical woman,” labeled Victorian Hysteric, who sighs “OH MY!” and the anxious mom, labeled 21^st Century “Supermom,” who cries, “MY KIDS!”

Text: Both of these tropes figure women as self-involved and self-obsessed—and as driven by emotion when it comes to health risks (both “real” and “imagined”).

Panel 7: An angry-looking Anna stares directly at the viewer.

Text: Some in the medical community have even called food allergies “a form of hysteria.”

Speech bubble, Anna: UH-HUH.

Footnote: See Parker-Pope 2008.

Panel 8: Anna and the Supermom face the viewer.

Text: The major implication is that women—and mothers, perhaps most of all—are making “too big a deal” out of this allergy thing.

Speech bubble, Anna: I think we can agree that “big deals” are subjective!

PAGE 22

Panel 1: Anna faces the viewer.

Text: I’m not a mother, so while I can’t speak to that with personal anecdotes…

Speech bubble, Anna: Not to mention that many kids with food allergies become adults with food allergies…

Panel 2: Anna starts getting hives on her arms.

Text: I can speak to the realities of having possibly-fatal food allergies myself.

Speech bubble, Anna: Well, CRAP.

Panel 3: Anna’s face begins to swell with hives. She looks slightly concerned.

Text: I wish, sometimes, that I could join the ranks of “skeptical” doctors, hipster news columnists and comedians in just laughing it off, of painting anaphylaxis as the invention of hysterical helicopter moms with nothing better to do than monitor their children’s diets in intense detail.

Speech bubble, Anna: OR DO I?

Panel 4: Anna faces the fainting couch from earlier in the chapter.

Text: But—and at the risk of being viewed as “hysterical”—I can say with certainty…

Speech bubble, Anna: Good one, social programming—a fainting couch!

Panel 5: Anna’s face begins to swell up as she wheezes.

Text: As someone who has been to the Emergency Room countless times for allergic reactions (some of which seem to come out of thin air)…

Footnote: Seriously, I have lost count.

Thought bubble, Anna: Cross-contamination…could have eaten something I should not have…HOW did this happen?

Panel 6: Anna gets extremely upset as she realizes that she is having another severe allergic reaction.

Text: …And as someone who has doubted the severity of my own health problems because I am a woman, and have internalized the cultural messages that figure “woman” as “hysterical” and “overreacting” about her own body…

Speech bubble, Anna: NOT AGAIN!

Thought bubble, Anna: Am I making this into too big of a deal?

Panel 7: A “dramatization” image of Anna lying on the floor, presumably dead, as her pissed-off ghost form floats up and looks down at her body.

Text: …And who often gets tired of putting on a “brave” and/or stoic face when I am in a situation that might actually kill me…

Speech bubble, ghost Anna: HEY! I can’t be a ghost…I’m an atheist! FUCK

Panel 8: Anna’s face is so swollen that she cannot see.

Text: Allergic reactions are, in fact, a big fucking deal.

Nervous Systems Part One: Image Descriptions and Captions

PREFACE/AUTHOR’S NOTE

Images: Series of line drawings showing Anna, the cartoonist, interacting with Winston, her Yorkshire Terrier, while speaking directly to the reader.

Speech bubble, panel 1: Hi there! I’m Anna, the writer and cartoonist. This is my dog, Winston. He’s with me a lot.

Speech bubble, panel 2: We have some important information to share with you, the reader.

Speech bubble, panel 3: What follows is, in part, about 20 or so years of my life condensed into less than 100 pages…

Speech bubble, panel 4: So, somewhat obviously, I have skipped over quite a bit, and have left some things out.

Speech bubble, panel 5: I’ve tried to be as honest as possible, but I also want to give a nod to postmodernism here…

Speech bubble, panel 6: because how I view or depict certain events may not match up with how some of the other people involved view or would depict these events. I aim to be truthful! And I aim to be honest about my experiences.

Speech bubble, panel 7: As for the more theoretical stuff, I have included citations at the end of the text, plus a whole lot of footnotes.

Speech bubble, panel 8: With this in mind, please enjoy! And (I hope) learn.

PAGE 1 TITLE: LEFT/RIGHT

Panel 1: Illustration of a neonatal incubator.

Text: I was born three months prematurely. I weighed less than three pounds at birth.

Panel 2: Illustration of a small baby in the same incubator, next to a teddy bear.

Text: I was not expected to survive, thanks to a cerebral hemorrhage (sic) and a collapsed lung.

Panel 3: Line drawing of a foot, with a scar on its heel. An arrow, with text, tells us that it is a surgery scar on the narrator’s left heel.

Text: Thanks in no small part to medical science, I survived, but not without a souvenir for my troubles.

Panel 4: Line drawing of a person’s body, with the left hand outlined.

Top text: My first entrée to disability was mild cerebral palsy…the end result of my early arrival.

Bottom text: The left side of my body would always remain weaker than its twin.

Panel 5: Image of the same body with a dotted line down the middle.

Text: The physical issues caused by my CP seemed fairly straightforward.

Panel 6: Image of two feet walking; one is lifted higher off the ground.

Text: My left foot had a bit of a limp, for one thing.

Panel 7: Image of two legs, with one shaking.

Text: My left leg would also get “the shakes,” often at random intervals. On their own, many of these things seemed normal to me—not bad, just different.

Panel 8: Image of young Anna, looking disturbed as she is surrounded by HA HA HAS of different sizes.

Text: When other people entered the picture, though, it was a different story.

PAGE 2 TITLE: GROWING PAINS

Panel 1: Image of young Anna with her family: dad, mom, and younger brother Patrick.

Text: As a child, I had a happy home life.

Panel 2: Image of young Anna, surrounded by smaller images labeled with various interests: Reading, writing, art, lemurs, film, cartoons.

Text: I had interests in a lot of different things, and was lucky to have a family that encouraged my more esoteric leanings.

Panel 3: Image of Anna sitting and reading under a tree.

Text: At an early age, I began to suspect that I was not like other kids…

Panel 4: Image of Anna looking confused as other kids, off panel, yell things at her.

Speech bubble text: “What are you doing READING? At lunch!” “NERD!” “What a SPAZ!”

Narrative text: This was an issue that, unsurprisingly, blossomed when I was around other kids, mostly at school.

Panel 5: Another kid points at Anna’s foot and asks, “What’s WRONG with your foot?” Anna does not respond.

Text: It started small, as these things often do.

Panel 6: Dark clouds form over Anna’s head. She looks perturbed.

Text: By second grade, I had begun to suspect that there was something truly wrong with me, which resulted in more “bad days” than I would have liked.

Panel 7: Anna’s teacher gives her some well-meaning advice.

Text: Some of the advice I got was not especially helpful. My second-grade teacher, for instance, said…

Speech bubble text: ”Just try to treat those things like water off a duck’s back.”

Panel 8: Anna looks confused as she imagines herself as a quacking duck.

PAGE 3

Panel 1: Image of Anna interacting with Janet, her physical therapist.

Text: I’d known that some of my after-school activities, such as physical therapy, weren’t exactly “normal.” I liked physical therapy—my therapist, Janet, was someone I felt I could trust.

Speech bubbles: “How are you doing this week, honey?” “Okay, I guess. The kids at school are really annoying.”

Panel 2: Anna is confronted by two kids.

Text: Eventually, I reached a point of no return with many of my non-disabled classmates.

Speech bubble, girl: I heard you go to physical therapy…nerd! Speech bubble, boy: Only RETARDS go to physical therapy!

Panel 3: A row of smiling, exaggerated Anna faces addresses the other kids.

Speech bubbles: “Sure, you can copy my homework! Ha ha, yeah, I am a spaz!”

Text: By 6^th grade, I had decided to dedicate myself to becoming a “nice” girl—I thought that filling the ultimate stereotype of a girl would stave off teasing and bullying.

Panel 4: Anna stares at the viewer with a “poker face.”

Text: During this time, I got a lot of practice in hiding my true feelings when people would say or do cruel or shitty things.

Panel 5: At a doctor’s appointment, Anna’s leg is examined by a doctor.

Speech bubble, doctor: I’m just going to examine your leg, okay?

Text: This would also come in handy during some of my medical visits, although I was not always successful at hiding my feelings in that environment.

Panel 6: At the same doctor’s appointment, Anna is upset.

Speech bubble, Anna: It hurts…

Speech bubble, doctor: You’re doing so well. Almost done, okay?

Text: True to form, when my façade of “nice,” “brave,” and agreeable did crack, I began to hate myself.

Panel 7: Anna sitting at a desk, studying.

Text: I threw myself into school in an attempt to distract myself from both self-hatred…

Panel 8: Image of a squat glass, filled with alcohol and ice.

Text: …and some burgeoning home issues, most notably my dad’s alcoholism.

PAGE 4

Panel 1: Anna looks into the distance as a group of boys laugh; one appears to be grabbing her. A thought bubble next to her head reads, DON’T REACT.

Text: My “niceness” often prevented me from taking action against some of the more physical advances [at school]. Poker face was easier, I guess.

Panel 2: Anna’s dad brings breakfast to the kitchen table as Anna stands next to a chair.

Text: Meanwhile, things at home were weird.

Speech bubble, Anna: Dad, I’m tired.

Speech bubble, dad: It seems like you’re always tired. Here, have some breakfast.

Panel 3: Anna interacts with a pointing boy.

Text: Things at school were more or less consistent.

Speech bubble, boy: Do you have a limp because you’re RETARDED?

Speech bubble, Anna: Um, no.

Thought bubble, Anna: Asshole.

Panel 4: Anna has two thought bubbles next to her head; one depicting a hand grabbing her rear as the grabber laughs, and one reading, “Not much I can do, I guess.”

Text: I kept some of what was happening to myself; I figured that my parents had enough to deal with already.

Panel 5: In what appears to be a living room, Anna’s mom talks to her and younger brother Patrick.

Speech bubble, mom: Kids, Dad and I are going to be living apart for a while. It’s not because of anything you guys did…we love you both so much.

Panel 6: Similar image to panel 5’s; Anna and Patrick look away from mom. Their facial expressions seem to have some elements of confusion and anger.

Panel 7: Anna and her mom sit at the dinner table.

Text: Wacky adolescent behavior was easier to talk about than some of the more physical stuff.

Speech bubble, mom: You seem quiet. Did something happen at school?

Speech bubble, Anna: Yeah.

Panel 8: Anna and her friend, both dressed in P.E. uniforms, talk outside. The friend wags her finger as she speaks.

Text: My best friend at the time was the reigning queen of wacky, Janus-faced adolescent ridiculousness.

Speech bubble, best friend: You shouldn’t act so depressed.

Thought bubble, Anna: You wouldn’t know about THAT if it hit you in the face.

PAGE 5

Panel 1: The friend speaks to Anna again; both have pinched expressions on their faces.

Text: According to her, girls were a certain way.

Speech bubble, friend: Acting like THAT will make guys think you’re a BITCH.

Speech bubble, Anna: Ok.

Thought bubble, Anna: Whatever.

Panel 2: The friend grasps the sleeve of Anna’s shirt; both are dressed in regular clothes.

Text: I regularly failed to measure up to her elusive standards.

Speech bubble, friend: What made you buy that shirt? You look like a slut.

Thought bubble, Anna: Maybe if I just let her run her mouth, she’ll get bored and stop.

Panel 3: Diagram of “other” markings, highlighted with arrows and text: zits, big boobs, lack of “acceptable” fashion sense, limp.

Text: Certain things marked me as “other,” but my disability was perhaps most damning.

Panel 4: Anna, wearing pajamas, examines a copy of the book Reviving Ophelia and reads the summary on the back cover. Thought bubble: Sounds interesting!

Text: Home sick from school one day, I found Mary Pipher’s Reviving Ophelia on my parents’ book shelf. I read it cover-to-cover in two days.

Panel 5: Anna reading and looking shocked.

Text: From then on, things began to look rather different.

Panel 6: Anna looks sad; thought bubbles surround her head: Why am I so WEAK? Why can’t I stand up for myself?

Text: I was not well-versed enough in feminist theory to notice the problems with that book, but so much of it made sense to me. The sections on [the] expectations heaped upon young women felt especially relevant to me.

Footnote: See Gonick 2006.

Panel 7: Anna angrily says “Not again!” as her left hand shakes. Thought bubble: I am so fucking disgusting…

Text: I was pretty terrible at mimicking “proper” girl behavior anyway, but disability seemed to intersect with these expectations in some very odd ways.

Panel 8: Small drawings illustrating Anna’s limp, leg brace, and harassment by other kids.

Text: From my limp to my medical foot and leg braces to the harassment—I was at once a girl and “other than.”

PAGE 6

Panel 1: Image of a report card showing A and B grades.

Text: The more crap I had to deal with in various environments, the higher my grades got.

Panel 2: Anna looks in the mirror as she pokes at a zit.

Text: I also hit puberty fairly early; this only added to the pile of crap.

Speech bubble: I’m 12 years old…I should NOT be getting zits.

Panel 3: Anna lies in bed, in pain from leg cramps.

Text: Muscular “growing pains” in my legs, which kept me up at night, weren’t fun…

Speech bubble: OW.

Panel 4: Anna looks at her chest quizzically.

Text: …nor was waking up one morning and discovering that I had breasts.

Panel 5: Anna grumbles.

Text: Filling out came with its own set of problems.

Thought bubble: Well, shit.

Panel 6: Anna experiences boob pain.

Text: There was pain in a sensitive area, for one thing.

Panel 7: Two middle school boys try to grab Anna’s chest as they laugh hysterically.

Text: Unwanted attention from boys…

Panel 8: One girl snaps Anna’s bra as another looks on and laughs.

Text: …and girls, for that matter.

PAGE 7 TITLE: SUPERCRIP

Panel 1: Anna makes a decision to be “normal.” A thought bubble above her head shows her as a weird monster.

Text: The CP was—unlike my health issues that would come later—nearly always in danger of being pointed out by my peers, or in danger of being pointed out. I tried my best to hide it…which did not work.

Speech bubble: I’ll just be NORMAL!

Panel 2: Anna interacts with another girl.

Text: Being seen—and known—as the “girl with the limp” had its own set of problems.

Speech bubble, girl: Get away from me, RETARD.

Speech bubble, Anna: Sorry.

Thought bubble, Anna: So much for that “normal” thing…

Panel 3: Anna stands to the side; a group of kids laugh as her former best friend makes fun of her.

Text: I felt like I was constantly being watched, for one thing.

Speech bubble, friend: And then she was like—

Panel 4: Anna looks worried and sad.

Text: Nor did I understand, at that point, that other kids’ comments about my body were more about their own inability to deal with differences.

Speech bubble, Anna: Why do they hate me?

Panel 5: Anna thinks.

Text: At some point, I became convinced that getting straight A’s—and generally striving to be a “good kid”—was the solution to my problems.

Footnote: Along with being “nice.”

Speech bubble, other kid: Hey, BITCH!

Thought bubble, Anna: How can I make people respect me?

Panel 6: Anna makes a plan.

Text: I didn’t expect the CP to go away, per se—but I did want to compensate for this difference.

Thought bubble, Anna: I know! I’ll get straight A’s AND try out for flag football AND run for Student Council AND participate in volunteer work AND…

Panel 7: Text only.

Text: The trope of the disabled person who strives to overcome her disability via amazing feats is not uncommon, and even has a name: SUPERCRIP.

Panel 8: Text only.

Text: As the disability activist Lorenzo W. Milam writes, supercrip is a personification of “Roosevelt Syndrome—scaling great heights, smiling…convincing everyone that there is nothing going on inside…nothing at all (5).”

Bottom text: It seemed like a good idea at the time.

Footnote: See Milam 1997; see also Hamilton 2009.

PAGE 8

Panel 1: Anna smiles as she makes a decision.

Text: In effect, I strove to become a sort of miniature Supercrip during my early adolescence.

Speech bubble: I’m not going to let my foot bring me down!

Panel 2: Anna runs for Student Council, sits in a meeting, and studies.

Text: My list of accomplishments during this time included running for Student Council multiple times, staying in Student Council for over a year once elected, and, of course, getting extremely high grades.

Panel 3: View of stage during a school talent show as the emcee introduces acts. A banner, reading “Talent Show 1999,” is hung above the stage.

Text: I also participated in plenty of school events.

Speech bubble, emcee: Our next act is a dance routine set to the Spice Girls!* So…please welcome Anna, Alex, Lauren, and Rachel from Grade Six!

Asterisk: Unfortunately, I am not making this up.

Panel 4: The girls perform their dance routine.

Text: All in all, I thought I was doing ok with this “good kid” stuff.

Panel 5: Anna’s parents congratulate her on her report card.

Text: The adults were cool with it…

Speech bubble, dad: Wow! Straight A’s again! Good job!

Speech bubble, mom: We’re so proud of you!

Panel 6: Two kids confront Anna after the Talent Show.

Text: …but the other kids certainly were not.

Speech bubble, boy: You were HORRIBLE! You are such a SPAZ.

Thought bubble, Anna: I didn’t see YOU up there…

Panel 7: Anna holds a mask that shows her own robotically cheerful face.

Text: Soon, being “good” started to feel like it wasn’t enough. I had to be PERFECT.

Panel 8: Anna throws the mask to the ground.

Text: The less “perfect” I was (according to my own impossibly high standards), the worse I felt.

Thought bubble, Anna: Eff this.

PAGE 9

Panel 1: Anna looks sad as the taunts of her peers, spelled out, surround her. The taunts read: failure, gross, weak, dumb, emotional, stupid, bad, ugly, lame, fat, bitch, retard, eww, slut.

Text: I felt like I would never be good enough. And if I couldn’t be “perfect,” I didn’t deserve to be liked or loved.

Panel 2: Anna looks in the mirror.

Text: This is not uncommon for young women to feel. As Charlotte Caron notes, “the desire to be liked becomes paramount” (22) during adolescence. The desire was there, as was the feeling that I didn’t deserve to be liked or loved.

Footnote: See Caron 2007.

Panel 3: Anna’s reflection in the mirror shows her as a monster with horns and a tail.

Text: In my mind—and, I assumed, the minds of others—I was too gimpy, too unfeminine, and too screwed up to be of use to anyone.

Speech bubble, Anna: Wow, I am disgusting.

Panel 4: A pretty, perfectly dressed little girl sings as Anna looks at her sadly.

Text: Where other girls were graceful and feminine, I was clumsy, shy, and weird-looking.

Panel 5: Anna sits on the floor after trying to walk in short heels.

Text: Feminine trappings were too difficult for me to pull off with success. Heeled shoes were out of the question.

Footnote: Still are, thanks to balance problems.

Speech bubble: How does ANYONE walk in these things?

Panel 6: Anna, wearing hip clothes and makeup, tries to talk to her former best friend, who rolls her eyes in response.

Text: If I wore makeup and “nice” clothes, my deep voice and odd gait would betray that exterior.

Speech bubble, Anna: Hi!

Speech bubble, former best friend: GROSS.

Panel 7: Image of a high-heeled shoe, a dress, and lip gloss—all with x’s through them, and the word NO beneath each.

Text: The backlash from trying to be feminine scared me so much that I refused to wear light colors, dresses, and makeup for many years.

Panel 8: Image of the “woman” symbol and Anna’s left foot, labeled “being a girl” and “having a disability,” respectively.

Text: I spent a huge amount of time hating myself for the two things that I felt were least under my control: being a girl and having a disability. None of my supercrip aspirations could mask either.

PAGE 10 TITLE: VISIBLE

Panel 1: Image of Anna’s feet.

Text: The CP had—and has—an odd status as far as “visibility” is concerned.

Panel 2: Teenage Anna silently responds to a person who asks what’s wrong with her foot.

Text: Even while I was growing up, I always felt weird—and a little angry—whenever people would “helpfully” point out my limp.

Speech bubble, person: What’s wrong with your foot?

Thought bubble, Anna: NOTHING, jackass.

Panel 3: An old man points at Anna as she walks by.

Text: Many times, it felt (and still feels) as if they were really saying that I was too unaware of my different body—and it needed to be pointed out!

Speech bubble, old man: You’re limping!

Speech bubble, Anna: I sure am!

Panel 4: A woman with a cane walks as several large sets of googly eyes stare her down.

Text: In general, women’s bodies are so subject to cultural policing that the monitoring of disabled women’s bodies does not seem particularly surprising.

Footnote: See Bartky 1989; the same could also be said of those whose bodies don’t fit “traditional” gender presentation.

Panel 5: Image of the “woman symbol” and a question mark, surrounded by words: fat women, women of color, queer women, poor women, trans women.

Text: Many women who do not fit white, abled, thin, and cisgendered norms of what a woman “should” look like also experience this policing—and the cost of that visibility.

Panel 6: Image of a heart along with the words LOVE YOUR BODY! An asterisk denotes “If it looks and acts like it’s supposed to, that is.”

Text: In recent years, popular feminism has encouraged (young) women to “love” their bodies.

Panel 7: Image of a white woman’s bare stomach.

Text: Body acceptance seems to be catching on…at least for white, young, abled, middle-class straight women.

Panel 8: A delighted feminist talks about body acceptance.

Text: Many “new” feminist activists with media platforms wax poetic on the importance of women’s “self love…” without also considering that they are speaking from a fairly normative position in so doing.

Speech bubble, feminist: I love MY body…therefore, EVERY woman should love hers!

PAGE 11

Panel 1: Anna walks to catch a light rail train.

Text: Loving oneself and one’s body, too, becomes a bit harder to do if you’ve been told by both mainstream culture and more liberal feminism that your body is weird, ugly, or just plain doesn’t fit in.

Panel 2: A young guy tries to ask Anna about her cane; Anna looks annoyed and does not respond.

Text: I suspect that some will protest this statement—after all, feminists and women with privilege have body image issues, too—but abled feminists and women face body policing that is substantially different from what women with disabilities face.

Speech bubble, young guy: Hi! What’s the cane for?

Thought bubble, Anna: SHUT UP, SHUT UP, SHUT UP, SHUT UP.

Panel 3: Another stranger asks Anna about her limp; Anna does not respond.

Text: “Loving your body” is not easy to do when your body is consistently pointed out as “abnormal” because you are both a woman and are disabled, or are a woman and non-white, or…well, I could go on.

Speech bubble, stranger: Why are you LIMPING?

Thought bubble, Anna: Fuck off.

Panel 4: The “love your body” feminist from page 10, panel 8 looks confused.

Text: That such “abnormality” is made visible on a near-constant basis—and that this making-visible is obscured by non-disabled, “body positive” feminists—only adds to the feeling that we do not belong.

Speech bubble, feminist: Disability? How is THAT a feminist issue?

Panel 5: Anna looks concerned.

Text: Even in the “feminist” movement, people like me are still not all there—at least in popular feminism.

Panel 6: Anna looks conflicted, and then concerned again. Words surround her: WHITE, YOUNG, MIDDLE-CLASS OR ABOVE, HETEROSEXUAL, and finally DISABLED.

Text: Further, some of us are visible and invisible simultaneously. It is odd.

Speech bubble, Anna: I feel very conflicted about this!

END OF CHAPTER

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.

Once I am actually medicated and back in bed with my grumpy self, it’s not uncommon for me to get a few more hours of sleep. The usual pattern is that I will emerge from that snooze cocoon at least a little more refreshed. But on my worst pain days, those lost days that refuse to leave me alone, I’ll wake up and be in a ridiculous amount of pain. Getting any sort of work done on those days seems laughable; even if I can get a half hour or so done, quality is not guaranteed. The things I can do are limited: I may be able to read a few pages if my brain doesn’t make the words look like they’re floating off the page, or watch an episode of a TV show if I’m not sensitive to sound. Sometimes I can draw, or listen to a podcast. There are things I have to do on those days: get dressed and take the dog out. I can’t guarantee that I shower every day—gross, I know—but my dog, Noodle, gets at least one long walk. If I’m having a shitty pain day, I’m spending it in bed or on the couch, which sounds boring but it is also the truth.

Being tired all of the goddamn time is another super cool symptom of fibromyalgia. I have sleep apnea, which is a super great addition to fibromyalgia because it means that I do not get enough oxygen when I sleep. The recent wildfires in my state (the Bay Area now has THE WORST AIR QUALITY IN THE WORLD, in addition to all of the destruction that the Camp Fire has caused) have impacted my nasal passages enough that no nasal spray will totally clear them. The end result is that I haven’t been able to use my CPAP as directed during the last two weeks because doing so feels like I am breathing through a cocktail straw in one nostril. It is what I imagine drowning would feel like. It is not conducive to sleep.

(Note: I’m pretty sure that at least one person is thinking, “PEOPLE HAVE LOST THEIR HOMES, WHO CARES ABOUT YOUR ASTHMA AND YOUR STUPID CPAP MACHINE?” and you’d be totally right, but instead of scolding me on the internet, you can donate money to help people who have lost their homes!)

Fibromyalgia tiredness is not the same thing as, say, hung-over tiredness or stayed-out-too-late tiredness—two types of tiredness that are under human control. It’s more like all-caps I HAVE NOT SLEPT FOR TWO DAYS AND AM HALLUCINATING tiredness, or the kind of foggy, what-the-fuck-is-happening tiredness that one experiences with the flu or a bad cold, or perhaps being on some sort of illegal substance. I imagine that CFS/ME tiredness is worse than what I experience. Having the CPAP machine OTHER than during the fires has helped, because it means that I can breathe properly most of the time, but I still experience weird bits and pieces of days where it feels like I just cannot stay awake.

Occasionally, I have insomnia, which is fun because it usually springs up for no reason at all. I also get pain-somnia sometimes, which is when I can’t sleep because of pain. I would get things done during this time, except I have tried to “be productive” when I can’t sleep from pain before, and it usually ends in a big (metaphorical) pile of shit. The best I can hope for is that I can watch some episodes of King of the Hill before my pain finally goes, “Fine, dude, you win. Go to bed,” or I can suddenly see through another dimension from staying up all night.

I am in some sort of pain all of the time. Yes, all of the time. Yes, even when I take medication that takes the pain down a couple notches. The only time I can really say that my pain level has ever been “almost nonexistent” was when I was hospitalized for pancreatitis and got Dilaudid for the pain. This is not an experience I’d ever want to repeat, but I will say this: DILAUDID IS AMAZING. (Note to drug company execs who may be reading this: I am available to write ad copy for a substantial fee!)

Okay, enough about me spending more time in bed than Sleeping Fucking Beauty and stocking a small pharmacy’s worth of medications in my bathroom cabinet. Let’s see what happens when other people offer opinions about chronic pain and/or illness!

PEOPLE SAYING ASININE THINGS ABOUT CHRONIC PAIN: A SAMPLER PLATTER OF BULLSHIT, IN LIST FORM

“You can’t be in THAT much pain!” Look, I have worked through level 7-8 pain before. One government agency where I worked was understaffed the whole time I was there, and I was doing the jobs of two or three people instead of one person—so I didn’t have a choice. I’ve had terrible temp gigs where the only option was to be very quiet about my disability so that I wouldn’t get mysteriously “let go.” I have been at family gatherings, in classes, or doing other stuff only to have my pain level shoot up so high you’d swear it was the butterfly from the Reading Rainbow theme song. So, yeah, sometimes my pain level is so significant that I just have to deal with it EVEN THOUGH I am at an event, or working, or otherwise not at home and comfortably in bed or on the couch like I should be. Sometimes you have to do stuff that requires that you work through pain, which sucks, but yes, I absolutely am in that much pain sometimes. I might be in THAT MUCH pain while talking to you, and saying something like this will only confirm to me that you are not a safe person to whom I can express that.

“[Some stuff about the OPIOID CRISIS booga booga]” Some people with chronic pain need opioid medications. I have written about this very thing!

“Have you tried medical marijuana?” I have asthma. Smoking anything is a bad idea. Yes, I have tried tinctures and stuff. No, they didn’t all work for me. No, I don’t really feel like discussing it any further.

“Oh, I read a magazine article about that!” This feels like a conversation opener on paper, but verbally it almost always falls flatter than the aforementioned magazine page. Yes, you read an article about something that I live with; good job! Please try to contribute SOMETHING conversationally, is my plea.

“You should try vitamins/cherry juice/other untested remedy!” I’ve tried expensive vitamins and they did not do anything. I tried going gluten-free and sugar-free, and neither did anything except leave me hungry and grumpy all of the time. Do you think I have unlimited money with which to try out whatever “natural” remedy is being hawked on Instagram this week by smiling white women under the age of 25, many of whom look like they just walked out of a stock photo? I do not.

“I’m tired and have pain too–you Millennials are always complaining.” Do you want a trophy, dingus?

“Chronic pain is not a DISABILITY disability.” If I beat you to a bruised pulp with my cane, is that painful? IT SHOULD BE, MOTHERFUCKER. For the love of Bey, don’t be a presumptuous asshat and say something like this, because my reaction might get me a night in jail.

A suggestion for people without chronic pain: just try to avoid saying this stuff if you come into contact with someone who has chronic pain or illness. Trust me. We have heard it all.

I feel like I should have some sort of funny and inspiration conclusion to this that makes people want to post the party/congratulations emoji when linking on Twitter, but that’s not happening. Happy Thanksgiving, I guess.

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.

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.

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.

My partner, Liam, took me to Urgent Care (conveniently across the street from our apartment!) mid-day on Saturday. When we got to the exam room, I threw up in the sink twice. More sand-barf. The urgent care doctor came into the room; he took my blood pressure, noted the sand-vomit in the sink and the sweat running down my jaundiced face (like a bunch of icicles melting in fast time-lapse), and told Liam that I needed to be taken to the Emergency Room right now.

I barely remember checking into the ER, but I was sweating a ton and had dinner plate-sized sweat stains beneath my armpits, in addition to the jaundice.

In my ER bed—after I threw up some more, this time into a bedpan–I scrolled through the current popular Twitter hashtags on my phone. It was the day of the Women’s March, and there seemed to be a lot of pictures of women smiling, holding signs, and proclaiming the importance of HASHTAG sisterhood.

I briefly wondered what “the sisterhood” would think of my shitty body’s propensity to make me physically unable to march or protest. I might just be the world’s worst feminist with a crud body to match, I thought. I updated my Twitter to say that I was in the ER.

We waited. A nurse came in to take my blood pressure and other vitals, and to draw some blood. We waited some more.

Finally, the ER doctor on duty pulled back the curtain and greeted me. “I’m going to have to admit you to the hospital,” he said as he looked over my admission paperwork. “You’re gonna be here for a while. I think the problem might be your gallbladder, but we’ll have to run some more tests to be sure.”

In addition to the potential gallbladder problems, the doctor said that my weird vitals and test results indicated that I also had something called acute pancreatitis, a condition where the pancreas becomes inflamed, and makes you reconsider what the word pain means to you. The two causes of acute pancreatitis are gallstones and heavy alcohol use. I don’t drink, so the doctor thought (correctly, as it turned out) that this other painful issue was probably being caused by my gallbladder, filled with gallstones, all of which were acting the fuck up.

Liam called my parents to let them know what was going on, and that I was going to be in the hospital for a few days. I updated my Twitter feed again to try to distract myself from yet another round of nausea and wrenching lower abdominal pain.

As my stomach knotted with cramps again—and one of the nurses hooked my IV up to a morphine drip–I re-checked Twitter to try to distract myself. Two of my friends (both disabled) had sent well wishes regarding my ER status update.

My stomach kept hurting. I continued to sweat profusely. I was glad that the morphine did its job within 15 minutes.

After I was admitted, I was wheeled to a private room on the fourth floor, which was much quieter than the ER. A couple of hours passed, and I decided to go to the bathroom, where I threw up again in the laundry hamper. This time, the vomit was bright green and had the consistency of thick snot. FABULOUS.

There were some more procedural things lined up by the medical staff: until my pancreas decided to stop being such a shit (ie: became less inflamed) I was not to have food or liquids of any kind—including water. When affected by pancreatitis, the pancreas tends to confuse any liquid (even water) with food, so you’re not supposed to drink water or other liquids because that can make the pain worse.

There was more! I had to go get an ultrasound on my gallbladder area at some point, and an MRI, presumably so the medical staff could see the horrendous, spiteful, tiny stone children that my gallbladder had created just for me. Bonus: during that ultrasound I might get to see them, too, like a fucking inverted nightmare of joyful pregnancy ultrasounds. Congratulations, they’re making you vomit sand!

One thing that I did not know before being admitted to the hospital for this surgical procedure is that the hospital assigns patients their own nurse and CNA (certified nursing assistant) every day. My nurse for the first 12 hours of my hospital stay, Katie, physically resembled Bikini Kill singer Kathleen Hanna very strongly, which I thought was weird.

By this time, it had been a few hours since the ER nurse had given me morphine, and Katie offered me intravenous Dilaudid for the pancreatitis pain. My pain level was back up to an 8 out of 10, but I’m so used to keeping quiet and/or ignoring a lot of my daily chronic pain levels that I had not really noticed that the morphine was definitely wearing off—and fast—until Katie pointed it out.

“I have seen people with pancreatitis in here screaming in pain and asking for IV painkillers on the hour,” she said. “It is completely okay for you to ask for more IV pain meds if you need them.”

After I heard that, I responded that yes, more Dilaudid would be helpful. One of the many great qualities of IV pain medicine for acute pain—at least in my extremely limited experience—is that it works quickly for some people. It also makes the time go by way faster, even if you’re not really doing anything.

My mom arrived a bit later, bearing a huge bouquet of orange flowers (my favorite color). She gave me a hug, asked me how I was doing, and we made small talk for a bit.

“I have a favor to ask you,” she said. “Could you read the latest draft of my new play? There’s a table read with the actors coming up on Thursday, and I really need your feedback.”

As I was very under-the-influence of pain meds at the time, I don’t know how helpful my feedback was.

At some point, another doctor came in and said that once the pancreatitis calmed down, I’d be scheduled for gallbladder surgery—not to take the gallstones out, but to take the entire organ out of my body. Remove the gallbladder, and painful gallstones cease to be an issue.

I was taken for my ultrasound in the evening and unfortunately did not get to see all of my tiny gallstone bros up close. My gallbladder looked weird and blurry, though, so that was good enough.

I did not sleep my first night in the hospital. One of the evening nurses gave me some IV Ativan after I told her I couldn’t sleep—this was plus the Dilaudid I’d had an hour and a half prior, at 9:30 PM—and I still couldn’t fall asleep. The nurse or a CNA would come in every two hours to note my vital signs anyway, so what was the point of trying to fall asleep?

I had another enemy in my battle for sleep that night: the calf-roller machine, which sounds like it has to do (adorably) with baby cows but is something quite different. The machine ostensibly prevents blood clots from forming in your legs while you are inactive and lying in your hospital bed, but it does so by squeezing your legs, hard, while rolling up and down. I spent the night listening to its motor, and feeling the weird knots in my legs, wishing for sleep.

*

Day two brought some more news: I had been scheduled for surgery! But the surgeon was still concerned about the pancreatitis and my lipase levels, so no food or drink for me.

Until my Real Housewives-esque slap-fight with pancreatitis and the resulting surgery prep, I had never felt more physically thirsty in my life. The CNA on duty gave me a couple of sponge-on-stick things to moisten my lips and mouth. I was not supposed to swallow the water when using the sponge-on-sticks, so I didn’t. My mom and Liam hung out most of the day; Liam was able to get some work done, and my mom decided to knit me a scarf to remind me of my hospital stay experience. The color I picked for the scarf was black, accented by a sickly (heh) green.

Liam went home to get some sleep and take a shower, and my dad, my brother Patrick, and his girlfriend, Joanna, came to visit. I was still on a lot of Dilaudid and very tired from not sleeping. Admitting this makes me cringe, but I don’t remember much about their visit besides getting to hear entertaining stories from Patrick about his work at a catering company.

Liam brought back some library books that I had put on hold. This was a welcome distraction. My tongue was drier than a shitty baked potato from a greasy spoon restaurant, and my lips felt like lizard skin. However, I was happy that I had remembered to ask Liam to bring me a tube of lip balm from my home collection of about 20 of them.

After Joanna and my brother left to go to an event, it was MRI time for me. The purpose of this MRI was so that the medical team could get a more accurate picture of my gallbladder and pancreas. EXCITING. I’d had an MRI once before—for a hilariously tiny, painful hairline fracture I’d sustained in my left wrist, years ago—and had gotten through that experience by repeating Frank Zappa’s song “It Can’t Happen Here” in my head for 45 minutes, until the procedure mercifully ended.

[It Can’t Happen Here Lyrics]

EDIT FROM FUTURE ANNA, ONE DAY AFTER THIS WAS POSTED: YES, I CAME BACK AND ADDED THE YOUTUBE VIDEOS FOR BOTH SONGS.

Here’s what an MRI is like: Medical techs help you onto a conveyor-belt sort of thing, which moves into a stark, white tube—VERY SLOWLY—that is lit up like the worst institutional lighting situation ever created by humankind. The machine itself is something that might actually be more at home in a Kubrick movie set in the future than in a hospital setting.

The MRI tube fits around the human body—snuggly, in some cases, as I found out when I realized that my nose was about a half-inch away from being able to touch the top of the tube once I was fully inside. The techs give you a call button for you to push in case the experience of having your insides scanned while you’re inside of a stark white, bad science fiction-y metal tube is too intense. They can also communicate with you through a fancy two-way radio once you’re in the machine.

And then there is a fuck-ton of noise and banging. This goes on for 40-45 minutes. Imagine if Lou Reed’s Metal Machine Music was a medical procedure instead of one of the most notoriously bad albums in history (it’s just guitar feedback), and you will begin to understand why full-body MRIs make some patients anxious to the point of panic attacks.

I got through this MRI without having a panic attack by very quietly humming “Spanish Flea” by Herb Alpert and the Tijuana Brass for most of the procedure. This is a song that I like to hum to myself when I am having a panic attack for no reason, or am otherwise feeling like AHHHHHHHHHHHH I AM GONNA FREAK OUT RIGHT NOW for no reason, often due to my low-grade anxiety or PMS.

I was wheeled back to my room. My tongue was still dry, and felt kind of strangely dusty. I imagined my mouth as a desert, with a tumbleweed crossing the landscape every so often. I found this image strangely calming.

I didn’t sleep much that night, either, although I managed to get some shut-eye from around 3 – 6 AM for reasons that I do not know. I was nervous about the surgery—set for the following afternoon—and had no clue what to do with that energy. My mom stayed in the room overnight and slept on a cot, so I mostly listened her quiet snoring.

Three hours of sleep after two nights of almost no sleep was a definite improvement.

*

Surgery day! Until they prepped me to go into surgery around 12:45, there wasn’t much for me to do besides watch Luke Cage on Netflix and read one of my library books (artist Marina Abramovic’s memoir Walk Through Walls, which was aggressively okay). I was able to have a cup of ice chips in the morning, which was amazing.

The last thing I remember seeing was the anesthesiologist’s amazing hair, and then a huge light in the operating room.

I woke up and needed to pee more strongly than I ever have in my entire life. Instead of going with my first instinct and screaming I AM GOING TO PEE ALL OVER MYSELF RIGHT NOW, I politely asked if someone could help me go to the bathroom. A hand slid a bedpan under my buttocks. I wondered if I had embarrassed myself post-surgery in any way, possibly by complimenting the anesthesiologist’s hair. No one in the recovery room/lineup/wherever they stash people coming out of surgery mentioned it, so I figured it was best not to ask.

Barely five minutes went by, and I needed to pee AGAIN. Another hand slid a bedpan under me. I suddenly missed the feeling of sitting on the toilet.

I was wheeled back to my room, finally, and after a few hours, I was told that I could have ice chips again (!) since the pancreatitis had finally gone away.

I swallowed my ice chips very slowly. I watched some more episodes of Luke Cage on Netflix. My stomach and ribs ached a bit. Not knowing what else to do, I took a few photos of the surgical area, which was purple and red and absolutely disgusting, so of course I had to photograph it. My brother, Joanna, and my parents came over to hang out for a bit—which, AGAIN, I barely remember.

Later, I got to have some food; this is best left un-described, I think, because hospital food is the worst.

I slept, finally.

*

I woke up the next day and realized that my hair was unbearably greasy. I’d been trying to “wash” my hair with splashes of water from my room’s sink the last few days, but it didn’t work. By day two of my stay, it felt like I was wearing a dirty wig that somebody tossed out of a car window on a busy freeway.

There was good news on the horizon, finally! I was able to go home, finally, around 4 PM, after four and a half days in the hospital.

The CNAs had provided me with large body wipe sort of things during my five-day stay at the hospital, but as I discovered in short order, a sponge bath is no substitute for a shower. The first shower I took after coming home from the hospital is definitely in my “top 5 showers” list, even though I discovered bits of a wet lint-like substance on my skin while taking that shower, which made whole experience feel vaguely Cronenbergian.

I had just had an organ taken out of my body. If I had to choose two words for the whole experience, I would go with “vaguely Cronenbergian.” My belly scars healed within a few weeks—currently, they exist as little dots of pink and white scar tissue around the incision sites.

The whole thing was very bizarre, and parts of it made me wish that I could go the rest of my existence without having to go to the hospital as a patient ever again.

I don’t think that is going to happen.

From the (now inactive) Cute Overload blog to the /Aww subreddit, cute animals have been in high demand online for a while. But there’s a not-so-adorable side to the internet’s thirst for cute: the fetishization of animals, particularly pets, with disabilities.

The breathless coverage of apparently “inspirational” animals with disabilities is everywhere: A pig named Chris P. Bacon (ha ha, because we usually eat pigs, right?!) had a wheelchair made for his back legs! This duck has a new lease on life thanks to a prosthetic foot! Wow, a goldfish with a wheelchair! Don’t discount the thousands of results that a simple Google Image search for “disabled animals,” brings up, either—there are a lot of photos, stories, and memes about them.

As with a lot of internet trends, this fetishization is widespread, but difficult to trace to a single source; there are Buzzfeed articles, photo sets with varying degrees of context about the photo subjects’ disabilities, television specials, and—of course—lots and lots of “inspirational” coverage of humans who have saved animals with various disabilities (but WHO SAVED WHO?). So why is the internet obsessed with disabled animals? My take is that the various “inspiring” stories about disabled animals provide a way for nondisabled people to talk about and engage with disability in a facile way. If one is constantly gawking and aww-ing over pictures and stories about animals with disabilities, then they don’t have to spend time thinking about actual disabled people, or the ableism against disabled humans that still exists.

Much of the positive coverage of disabled animals takes a cue from inspiration porn, a term that was coined by disabled comedian and activist Stella Young. Disability activist and writer Rachel Cohen-Rottenberg sums up inspiration porn as “consist[ing] of the objectification of disabled bodies for the purpose of inspiring able-bodied people” to, among other things, stop whining, get a better attitude, and use their WILLPOWER to overcome various obstacles. The main message of a great many inspiration porn images, stories, and memes is generally: This person with a disability overcame adversity/got in shape/stopped whining and embraced happiness, so why can’t you, abled person?

Being inspired by other humans to live up to one’s full potential is not bad on its face, but inspiration porn reduces disabled people—and their varied life experiences—to life lessons and just-so stories that abled people can be inspired by and then forget about. Inspiration porn uses disabled people as objects—not subjects—in its quest to motivate (or shame) abled people into getting up and “doing something,” living their dream(s), or accomplishing amazing feats. Simply put, inspiration porn images, articles, and memes use disabled people as inspiring things to be shown off, usually for the benefit of abled people’s personal motivation.

There are other phrases and tropes that tend to be used in inspiration porn material, including “[condition or disability] doesn’t stop this person from achieving their dreams,” “[person] is so happy despite their disability,” and “[person] has such a great attitude about life” and can teach abled people so much about what it means to really live; that last one seems to have sprung from the ridiculous Scott Hamilton quote about the “only” disability being a bad attitude. [An aside: That quote is also a great example of a person with a disability policing the experiences and opinions of other PWDS—Hamilton has had a few much-publicized battles with cancer, but doesn’t seem to have realized that cancer is disabling, no matter what kind of attitude you cultivate.]

Unsurprisingly, these tropes are also present in a lot of disabled animal inspo-porn:

These animals are so INSPIRATIONAL for doing normal animal things, plus a side of “disability is bad”: “These fur balls were dealt crappy hands, but they’re still smiling, purring and wagging their little tails. That’s what I would call totally inspirational!”

[Disabled animal] has so much to teach us nondisabled people about compassion and empathy: “Now, Joe has a new mission: using his experiences to help teach young kids to prevent bullying by using empathy and compassion.”

Another [disabled animal] has so much to teach humans about themselves—and LOVE! “He shows them that with love and kindness anything is possible.”

Hear that, nondisabled humans? Don’t complain or feel sorry for yourselves—be like this cat. “Cats just figure things out…They do not waste time feeling sorry for themselves—they simply get on with the act of living and have a whole lot of fun doing it! In their heads, they are fine and dandy, just as they are!”

This INSPIRATIONAL cat can do things, just like normal cats! “Belle is quite an inspiration. She cannot jump like other cats, but that doesn’t stop her from climbing on anything that she can stick her claws into.”

Gawking at these disabled animals—and sharing their “inspiring” stories (usually written by nondisabled humans) across social media—becomes a way for people who may not have significant personal experience with disability to engage with some common tropes about disability. Unfortunately, many of these “positive” tropes about inspiring disabled animals who (unlike humans?) don’t complain about their lot in life are still damaging. It may not be politically correct these days to pity and gawk at people with disabilities, but it is accepted—even encouraged—for nondisabled people to project these feelings about disabilities onto disabled animals. The compassion that commenters, Tweeters, and social media sharers may have for these disabled animals doesn’t seem to extend to people with disabilities; while pigs and goldfish get wheelchairs and their humans are praised for “good deeds” by the internet, many members of the online disability community have had to crowdfund for wheelchairs.

Certainly, on the scale of issues surrounding the comparisons of disabled people to animals, this one lacks the horrifying implications that, for example, Peter Singer’s continued contempt for people with disabilities in the name of animal rights and utilitarian philosophy do. But the continued and unquestioned objectification of “cute” and “helpless” disabled animals highlights how even the most well-meaning nondisabled people can and do project damaging stereotypes and tropes about disability—and the apparently “inspiring” nature of people with disabilities–onto animals. Such projections do both animals and humans with disabilities a disservice. Disabled animals deserve to have full lives—not to just be “inspiring” objects at which to be gawked.

Originally published on Disability Intersections.