Body Talk

by Kelly Jensen

  At the beginning of Harry Potter and the Sorcerer’s Stone, Harry lives in a cramped, uncomfortable closet in a home filled with quite a few abusers, but at the end of Harry Potter and the Deathly Hallows, Harry is living a joyous life and no longer has to be afraid. Along the way, he creates a found family out of his friends, and it’s with them that he creates a life in which he no longer has to hide from his villains.

  It took a long time to find my people, but I did.

  We eat together. We laugh together. We create together. We have our disagreements. But they never question my sexuality (surprise: some of us share the same ones!) or my life choices. Best of all, they’ve never once made me feel like I don’t belong or like I’m broken, like I used to feel all those years ago.

  I still got the great fairy tale I’d always wanted, and I do it on my terms now.

  Your Asexuality Is Valid Whether or Not You…

  by amanda lovelace

  Go on dates.

  Have sex.

  Have a sex drive.

  Masturbate.

  Have a sexual or romantic partner.

  Enjoy romance novels.

  Have experienced sexual attraction.

  Want to get married.

  Have an OTP.

  Want to have kids.

  Have experienced trauma.

  Feel valid.

  Beneath the Surface

  by Abby Sams

  “But you don’t look sick.”

  The words hit me for the hundredth time, intended to be a compliment but never taken as such. Instead, they remind me of the blatant issue society has toward people with invisible illnesses and the deep-rooted ignorance on the subject of disability as a whole.

  An invisible illness is one in which the patient’s appearance does not signal to a bystander that they are disabled or ill. This lack of visual representation too often leads able-bodied people to make snap judgments that may be incorrect or downright rude. Since more than 10 percent of the United States population has an invisible illness, why do we still have to fight through a world that is often uneducated and impolite toward the chronically ill community?

  I have Ehlers-Danlos syndrome as well as reflex sympathetic dystrophy. Both conditions are incurable and cause me to be in a great amount of constant pain in my legs as well as the rest of my body. I wear knee braces and ankle-foot orthotics to help reduce the pain and the risk of dislocation when I walk. More often than not, I opt for my wheelchair when I go out for long periods of time.

  On the days I wear all my braces, I am constantly met with “What happened?!” by strangers. There is this idea that if you don’t actually look sick—because you’re young, pretty, fit, etc.—then you must be able to get better. The assumption that whatever is “wrong” with me isn’t permanent is the biggest problem with the “you don’t look sick” mentality. Because I look like a generally healthy young adult, even in my wheelchair, it leads people to believe that my condition must be curable or, better yet, that they have the solution. My inbox is flooded with links to diet plans, yoga classes, and essential oils that are supposed to cure me. I’m constantly told I’m “too pretty to be in a wheelchair” or “too young to be disabled” when the truth is that I can be pretty and be in a wheelchair and I can be young and disabled. Disability does not discriminate; people do.

  When people say, “But you don’t look sick,” they are suggesting that being sick or disabled or chronically ill is a bad thing or that it makes you less of a person. It’s supposed to make the receiver feel better about themselves. As children, many of us were raised to not stare, not point, not acknowledge people with illnesses or disabilities because it was “rude.” Unfortunately, those behaviors taught us that people with illnesses and disabilities were meant to be overlooked and avoided and weren’t meant to be talked to. The general lack of education about disability only furthers the stigma.

  “But you don’t look sick” can also be an accusatory statement. People with invisible disabilities and illnesses are accused of “faking” and “lying” about them.

  When I received my first (of many) windshield notes accusing me of faking my disability, I did not leave my house for weeks afterward, because I was too afraid to face the public. What if it was more than a note next time? What if I was alone? Because there is so little education on what disability and chronic illness actually look like, many people believe any deviation from a stereotype must be fake.

  These stereotypes grow because of the severe lack of representation—especially accurate representation—of disabilities across the spectrum in TV shows, in movies, and on the runway.

  Wheelchair users are often shown as completely paralyzed. Deaf characters usually either are profoundly deaf or are completely “cured” when they use a hearing aid. Diabetes patients (both type 1 and type 2) are either severely overweight or extremely malnourished. The representations of invisible illnesses fed to the public are starkly one sided, and whether or not those establishments know it or care, they perpetuate the idea that those depictions are the only true versions.

  The truth is, nearly 90 percent of wheelchair users have at least some function in their legs. But when the only representation of wheelchair users in media is complete paralysis, able-bodied people will virtually always ask a wheelchair user if they are “better” or “cured” or “faking” because they moved their leg or walked out of their car to grab their wheelchair. Ambulatory wheelchair users will hear shouts of “It’s a miracle” when they brave the public. And smartphones with the ability to record at a moment’s notice allow “miracle” videos to spread like wildfire on social media.

  For the invisibly ill, harassment is a regular occurrence, and fear becomes instilled in our hearts. There have been many times when I’ve visited a store alone and, once there, decided to use my wheelchair so that I could explore it more easily. But because I’ve had to walk around my car to get my wheelchair from the trunk, I’ve been confronted by strangers in the store who saw me walking in the parking lot. They come up to me, furious that I would “fake such a serious disability just because I’m too lazy to walk.” Or they tell me that I should “leave that spot for someone who’s actually disabled” before stomping away in a rage without giving me the opportunity to explain or educate. These experiences have forced me to learn how to put my wheelchair together from the driver’s seat, or to go shopping with friends so they can get my chair for me—all so I can avoid the conflict and the hate that too often come with trying to exist in an uneducated world.

  Many disabled people hoped the book Me Before You, and later the movie adaptation of it, would be the representation we had been waiting for. However, that was not the case. In the story, the disabled protagonist’s caretaker falls in love with him. He doesn’t believe they can live a fulfilling and good life together because of his disability, so he kills himself to “free” her from living a compromised life. This harmful narrative perpetuates and feeds the notion that disabled people cannot have full lives. I’m a young disabled woman who is engaged, and this kind of narrative has been used against my own extremely loving relationship. Many people have told me that my fiancé should leave me because I’m disabled and he shouldn’t have to “deal with that.” We both want to, and can, live fulfilling lives with love and happiness and adventure with one another. I do not experience life less simply because I am disabled.

  The “but you don’t look sick” mentality is one that can and will be changed. First, though, we need to break the stigmas that surround disability.

  I had the opportunity to do just that, thanks to the Aerie Real Me campaign, in 2018. Before I applied for the campaign, I had only ever seen one person in a wheelchair in the media. It was a single picture, and the model was wearing a tracksuit. It was trending on Twitter for all of thirty minutes before something else came up and it was swept under the rug forever. That was it. I had never s
een a model in a wheelchair wearing a cute dress, lingerie, or even jeans anywhere in the media. That drove me to apply for this campaign—I wanted to be the person I wanted to see and to be that person for so many other young women like me. After the campaign launched, many girls and women messaged me and thanked me for participating. I had one mom message me saying that her young daughter, who had recently started using a wheelchair, felt so left out and underrepresented while she was flipping through magazines and shopping. When they went to the mall and saw my picture in the store, she practically exploded with happiness and yelled, “MOM! This is it; this is what I was talking about. She looks like me!” Being able to be that for so many people really lit a fire in me to do more of this and to encourage more companies to do it too.

  That campaign got the ball rolling. More recently companies like Target, Zappos, and Tommy Hilfiger have released adaptive clothing or used disabled models in their shoots. I even got to be a part of another shoot for LimeLife beauty products as their first disabled model. More and more companies are diversifying their models and realizing that by doing so they are subsequently diversifying their entire brand. They are telling the public that their products are truly for everyone—and meaning it.

  Speechless, an ABC sitcom, made giant strides when it came to disability representation. The show navigates the lives of a family with a child who has cerebral palsy and uses a wheelchair, as well as a word sheet and caregiver to speak. The family lives in a severely judgmental and inaccessible world, and the show tackles a lot of problems many school-aged disabled kids face, with grace, humor, and seriousness. The way Speechless highlights problems is sharp and poignant without a “this is today’s lesson to be learned” kind of cadence. Not only that, but the actor who portrays JJ, the character with cerebral palsy, also has cerebral palsy himself. Seeing a portrayal of disability by someone who is actually disabled and has actually lived the narrative he is acting is such a liberating and educating experience. Not only is his portrayal accurate, but it’s a huge step in the media to use a disabled actor for a disabled role.

  We need to demolish the stereotypes around what disability looks like. But in order to break these stigmas and stereotypes, we have to be willing to actually do the work. Learn what wheelchairs are and how people really use them. Educate yourself on what kinds of disabilities are out there, both invisible and visible. Catch yourself before you judge someone who walks out of their car in a disabled parking space. Ask questions and be open to receiving answers you may have never heard before. Dig into the representations of disability you see in the media and why they might be harmful, especially to the disabled community. Breaking the stigma around the “but you don’t look sick” mentality starts and ends with you. So even though I “don’t look sick,” I am, because it’s so much more than looks. Disabilities and chronic illnesses are not, nor have they ever been, a one-size-fits-all style.

  What is self-care?

  Chances are that you’ve stumbled upon talk about self-care. But self-care is more than a good bubble bath or face mask. Self-care is the radical act of purposefully taking care of your body and your mind.

  The current concept of self-care is targeted at middle-class cis white women—because those bodies are easiest for companies to market and sell to. But self-care is for everybody and every body, and it’s not about buying or consuming. It’s about finding time and allowing space to nurture yourself for you and you alone. It is not an indulgence, nor is it frivolous. Self-care is an essential part of having and operating a human body, and it’s a discipline to practice every day.

  Self-care is different for everyone, but it might include saying no to things you don’t want to do (like going to a party or volunteering for a task that might take time away from sleeping, studying, or enjoying an activity you like more), ensuring you schedule enough sleep every day to function at your best, or moving your body in ways that feel good for the sake of feeling good and not to lose weight or change how you look (whether that involves playing a sport you enjoy, dancing in your room in your underwear, or going for a walk). It might mean filling your social media feeds only with things you like to see and removing any accounts that make you feel bad about yourself.

  Baths and face masks and other fun treats can be a part of self-care, but the real work isn’t necessarily Instagram-worthy or even all that interesting. Self-care might even be boring. But self-care helps you get up every day, face what’s ahead of you, and do so while feeling rested, refreshed, and empowered.

  Trigger Warning

  by Nat Razi

  I’ve read that all hospital waiting rooms are the same—same musty smell, same stiff blue padded seats, same old slightly racist magazines. I don’t remember if any of that’s true. My theory is no one else does either. The details fuzz, and people just remember the feeling. The same long wait, the same achy spine (maybe that’s just me), the same bored scroll through the same five phone apps while the magazines sit unread. Maybe there aren’t even magazines. Maybe we just think there ought to be.

  (Also the same crying breakdown when you hear for the third time that actually, they don’t take your insurance, or actually, your case is closed, or actually . . . And then the same frantic phone calls met with chipper “Your call is important to us!” recordings that lead nowhere. But those stories aren’t polite.)

  I’m at the hospital for my third independent medical exam, which basically means a doctor looks me over and asks a bunch of questions that all add up to them asking, “The car crash was a year (or two years or three years) ago—do you really still need treatment? Really?”

  This is year three, so my insurance company really wants to stop paying. (They’ve stopped paying six separate times already, but who’s counting?)

  Different hospital. Same wait. Same form to fill out. Same panic: What if I say the wrong thing? What if I say my left leg is numb and tingling, and last time I said my right, and I never get coverage again? (Something is always numb and tingling, something is always stabbing, and how am I supposed to rate from one to ten a pain that nestled between my shoulders three years ago and built a nest, a pain that owns more of my body than I ever have?) Same “Twist your head left, right. Lean forward. Lean back.”

  Pain explodes up my back, and I jolt straight. The doctor laughs. “That was uncomfortable for you, huh?”

  Same “Lift your arms.” Same tap on my legs. Then I’m gone, a two-minute meeting after a thirty-minute wait. No follow-up questions. Nothing but going back to work and waiting for the doctor to decide what a hundred adults have decided before him: whether what’s happening to my body counts as real.

  One of my earliest memories, age three or four, is a fight at dinner. My earliest memories are a lot of fights at dinner. Lots of smashed plates in the sink.

  In this memory, it’s a smashed glass against my head. Dad didn’t throw it on purpose, not at me—that matters to me a lot, I think.

  I don’t remember pain. I do remember a burst of green light fading into a pale blur, probably just milk splashing against my face and hanging off my eyelids.

  Years later, I asked my mom if it happened. She said no. Another time she said the glass hit the wall, not my head. Another time, when I remember something else, she said, “But you were wrong about the glass of milk, haha!”

  There was a dent in my head for years. You can see it in some pictures. I recall leaning against a mirror, tracing the curve where my skull remembered. When the dent healed, at least too much to be obvious to anything but my fingertips, I mourned. How would I know it was real anymore, with no evidence except my memory and what my nerve endings told me?

  Mom likes telling a story about slapping my brother because he bit me. She always tells it as the first time she hit her kids.

  I don’t remember how many times Mom has hit me. My brain says “not many,” but what does it know? I do remember trying to tell her about a book that said y
ou shouldn’t hit your kids, and her hitting me and saying how dare I imply that she hits me.

  There are a lot of those stories. Not all of them are about denial. Sometimes my dad does say his girlfriend ripped my hair, when he’s justifying not wanting me to talk to my stepdad; months later he’ll deny it. Sometimes my mom frets that my depression will destroy my entire life, and other times she sneers, “It’s always the same excuse, I’m depressed, I’m depressed!”

  Sometimes it’s about me inflicting my own pain on myself—a scratch here, a slash there, a reminder that I did feel.

  Sometimes it’s about me trying not to have a body, trying not to eat. Responses from family, most of them the same people: “You look amazing—keep up the good work.” “Stop it—you’re getting too skinny.” “All skin and bones.” Years and years later, when I eat enough most of the time, I’ll remember and be met with blank looks: “You weren’t that thin.”

  Many stories. They get repetitive.

  They’re all the same in the end: what you remember isn’t real unless the listener wants it to be. The sensations of your body, the marks on your body, aren’t real unless the listener wants them to be.

  Freshman year of college, a new friend says she worries her roommate’s parents may be abusive. I admit I’ve also experienced abuse. She laughs, throws her arm around me, and says, “You’re fine!”

  She’s known me for a month, but she’s already decided she knows more about my life than I do.