A mix of personal essay and cultural criticism, The Waiting Room, a new column for The Butter, will look at the places where women’s body image, illness, and disability intersect.
Oxygen is delicious. I’m not talking about fresh air—I’m talking about oxygen straight from the tank, pumped right into the nostrils through plastic tubing. I’m willing to overlook the piping’s new-shower-curtain smell; as soon as the gas starts flowing, my thoughts come into focus, my vision gets clearer, and as long as I keep that nosepiece on, it’s not a such a struggle to be in a body.
I didn’t realize that oxygen tanks were also increasingly fashionable until I’d spent some serious time with one after major surgery. In the weeks after leaving the hospital I had more time than energy, so I did what any self-respecting convalescent would do and binge-consumed mass media. It was after some long hours spent with A&E’s series Bates Motel and the “must-read” book of last year, The Fault in Our Stars, that I learned that every sick girl in pop culture needs her very own oxygen tank.
Bates Motel follows the life and exploits of a young Norman Bates in contemporary Oregon. The series focuses squarely on Norman—who will grow up to be a murderer who keeps his mother’s desiccated corpse in his living space in Psycho—a kind, well meaning, but troubled teenager. But more interesting to me than the sympathetic portrait of Norman is the odd treatment the show gives his sidekick, Emma. She’s got good looks, smarts, a dry sense of humor, style that suggests a personal shopper combing vintage stores on her behalf, and—God help her—she’s also got a thing for young Norman.
The problem for Emma, though, is that she’s also got cystic fibrosis, which the show’s producers signify by popping a nosepiece on Emma and giving her a charmingly tiny oxygen tank to wheel behind her. Actress Olivia Cooke gives a dry little cough every few episodes to remind us of Emma’s terminal diagnosis, but otherwise, Emma’s the vision of health. We even see her executing some pretty impressive sprints through the Oregon forest, tank in tow, the absurdity of which would’ve made me laugh if I’d had enough lung capacity to manage it.
It doesn’t matter what kind of wit, personality, or forest-navigation skills Emma has—her illness, it’s suggested, is a deal-breaker for Norman, who’s focused on the able-bodied but unavailable Bradley. Silly sick girls, Bates Motel tells us, even corpse-hoarding Norman Bates isn’t going to love you.
The Bates Motel writers had a real opportunity with Emma. She could very well have been her own person instead of a cardboard cutout of a sick girl—the writers could have allowed her some personal ambitions, say, or the opportunity to develop meaningful relationships with other characters. Instead, they’re content to let her moon around the motel, hounding for Norman’s affections, ready to aid Norman in whatever low-grade quest he has in each week’s episode.
But the writers do, from time to time, take Emma’s oxygen away from her. We catch her in moments when the tubing is off her nose, and we are supposed, I presume, to catch our collective breaths about how pretty she’d be if only, and to mumble what a shame. But this quick-change trick is as goofy in Bates Motel as it is in David Lynch’s Twin Peaks when Maddy, Laura Palmer’s cousin, takes of her windshield-sized glasses and suddenly, in soft light and with an orchestral swell behind her, she’s a knockout.
The easy-on, easy-off special effect of the oxygen tank troubles me not just because it’s such a lazy production trick; it’s also because it suggests that being sick in a publicly visible way is somehow a shame, and that we sick girls would be better off and easier to accept—even love—if nobody had to see us dragging around our accoutrements.
On the other side of the oxygen-tank-as-prop phenomenon in pop culture are strangers who are a little too comfortable with sick-girl paraphernalia, and who assume that girls like us must make great educational resources. John Green’s The Fault in Our Stars features another girl equipped with an oxygen tank: Hazel, a teenaged girl living with cancer, who makes herself inexplicably available for other people’s passing interests.
Hazel is at least the heroine of her own story, not a sidekick like Emma in Bates Motel, but she too has to earn her keep around healthy people; when approached by a toddling child in the local mall, Hazel removes her nosepiece and lets the child wear it, explaining that the oxygen helps her scarred lungs to function a bit better. In what’s supposed to be a charming scene, the little girl announces that she, too, feels much better now. After the teaching moment concludes, Hazel gives the plastic nosepiece a wipe on her shirt, then pops the fitting back into her own nostrils as the child shuffles off.
I had to put the book down after reading this scene. Frankly, I wanted to take a shower, or at least to make very liberal use of hand sanitizer. Hazel is, like me, taking high doses of steroids. While they have many wonderful therapeutic benefits, steroids suppress the immune system, reducing the body’s ability to combat infection. For the person taking a high-dose steroid, a germ as innocuous as that of the common cold can precipitate a rapid spiral into pneumonia. A flu virus is even more serious business. A disease like whooping cough, which is making quite the comeback, would almost inevitably mean lights-out out for Hazel.
But Green seems to think it’s fine for Hazel to willingly offer to place her personal medical device in someone else’s germy, mucousy nostrils for the sake of satisfying a stranger’s curiosity. For Green, the satisfaction Hazel experiences at the interaction appears to be worth the very real risk to her health. If she’s going to die anyway, the book suggests, her job in the meantime must be to teach healthy people some friendly life lessons.
It’s not fair, of course, to expect that the every fictional representation of sick women be accurate reflections of the many and varied aspects of our lives. Maybe I should just be happy to see, for once, some characters who resemble me. But I think it’s fair to want to see those characters treated not as sad cases or as life-enriching educational resources, but as people—human beings made up of the same stuff as everyone else, occupying the same space as everyone else, breathing the same air, even if it comes through a plastic tube and a nosepiece.
Tags: chronic illness, kelly davio, the butter, the waiting room
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The whole “disabled/ill person teaches the rest of us a beautiful lesson” trope is one of the worst, right up there with “disabled/ill people are so inspirational.”
I think this series is going to be great – I’m so happy to see it here!
If you haven’t seen it, please watch Stella Young’s “I’m Not Your Inspiration, Thank You Very Much” TED Talk. In part, she discusses “inspirational” depictions of non-normative bodies (motivational posters of runners with prostheses and the like) as pornography: the objectification of one group of people (here, those with different ability statuses) for the benefit of another group of people (those with normative ability status). As a person who has self-indulgently wept watching the Special Olympics, it really convicted me: No one is here to teach me anything, to make me grateful for anything, to jar me out of my complacency and mediocrity so that I can Live My Best Life. No one’s life is merely an object lesson for my edification.
Tangentially related: anyone else feel that the Sick Girl as Spirit Guide is of a piece with the Manic Pixie Dream Girl and the Magical N***o (I know this is a term in the discourse, I just don’t want to lob it out there if it might activate anyone’s triggers). The subaltern identity figure whose job it is to play a role in the formation of (usually) a white cis male, who himself will eventually surpass his subaltern guide (who, in turn, is usually discarded, having fulfilled his/her purpose as instructive plot device) in achievement and merit.
I will check the talk out–thank you!
All of this is true, and yet, I was probably just as irresponsible when I was a teenager dealing with cancer, because teenagers are not great at thinking in the long term and we all want some measure of control over our actions, especially when they’re as circumscribed as they are when you’re seriously ill–not to mention that steroids can play merry fuckin’ hob with your rationality. Some kids with cancer are mature enough to follow all the prescriptions and proscriptions on their actions; others display some form of teenage carelessness because we’re not thinking or we’re trying to make connections that will make us feel less like alien bubble children. Green worked enough with pediatric cancer patients that I’m willing to believe he saw kids do dumb shit, because that’s what kids do, cancer or no. (Hazel having a sex drive seemed a lot weirder to me; at no time in my life have I been less inclined to think about sex or romance. Those parts of my brain went AWOL for two years.)
I’ve been thinking about your comment about Green and seeing kids do reckless things, and I think…maybe. Maybe not. I don’t know about you, but I notice a real tendency in YA novels to be didactic; when kids in YA stories make bad choices, the author will have the other characters respond or even just flinch in a way that flags the behavior as a Really Bad Idea. (Green doesn’t do it as much as other authors do, though I still see the teaching tendencies in TFIOS.) There’s no outside response in this scene at all. I may be wrong, of course, but I think that, if Green were thinking about it, he’d “hang a lantern” on the fact that this is pointlessly risky and detrimental behavior.
It took getting really sick to bring out my unreasonable adolescent. Something about the boundaries that come with lots of medical care just makes you want to see what you can get away with. I stuck it to the man by skipping my meds for a while.
I've been thinking about your comment about Green and seeing kids do reckless things, and I think…maybe. Maybe not. I don't know about you, but I notice a real tendency in YA novels to be didactic; when kids in YA stories make bad choices, the author will have the other characters respond or even just flinch in a way that flags the behavior as a Really Bad Idea. (Green doesn't do it as much as other authors do, though I still see the teaching tendencies in TFIOS.) There's no outside response in this scene at all. I may be wrong, of course, but I think that, if Green were thinking about it, he'd "hang a lantern" on the fact that this is pointlessly risky and detrimental behavior.
Love this, can’t wait to read more from this column! Much needed.
I didn't do risky teenage things until I got sick and thought, "screw it".
I loved this. Have you ever seen disabilityinkidlit.com?
I have, yes! I follow Kayla on Twitter and found the site through her.
I have, yes! I follow Kayla on Twitter and found the site through her.
I will check the talk out–thank you!
Aww, Stella. RIP, lady.