Body Talk Read online

  Sometimes standards are used as weapons. They’re used to keep people down so others can benefit. They’re used to tell those who are down that we’re not enough as we are but that we can be enough if we pay for it, if we consume the products, the lifestyle, the dreams we are sold. They turn us from humans—in all our wonderful, untidy difference—into consumers. They’re used to build worlds in which white, straight, average-height, and nondisabled men have more power. They’re used to build worlds in which women, people of color, the LGBTQ community, disabled and dwarf people, and every intersection between have less power. They’re used to enable racism, sexism, homophobia, and misogyny. They’re used to present men and women as strict opposites, excluding everyone between. They’re used to enable a “gold standard” of manliness. When men believe we’re not meeting this standard, we often feel shame, defeat, and self-loathing. This type of masculinity has been directly linked to depression, mental health problems, and suicidal feelings, according to a report from Samaritans (a UK-based mental health charity).

  Standards like these—which exclude disabled bodies, dwarf bodies, fat bodies, nonwhite bodies, trans bodies, nonbinary bodies, deviant bodies, scarred bodies, broken bodies—shouldn’t be met. Standards that push young boys and men into feeling that they have to be “manly,” that they must be this way and not that way, shouldn’t be met. They should be torn down. We can start by rejecting what they’re selling. We can start by loving who we are and what we already have—ourselves and our bodies. This isn’t easy. It’s not as simple as flipping a switch. But love isn’t supposed to be easy. Sometimes my body vexes me. And that’s fine, because it’s mine to be frustrated with and no one else’s. Like any relationship, sometimes we bicker and argue, but throughout it all, I love my body. My beautiful, broken, scarred, dwarf, and disabled body.

  I realize now that my body did not betray me. It did what all bodies do eventually, especially ones we push too hard—it broke down. I realize now that my body is not a stranger to me. Our relationship is just in a different stage. As I grow and change as a person, so does my body. Bodies, like their owners, are complex and messy and gorgeous and weird and changing all the time. I realize now that I am disabled, that I have always been disabled, not just by society but by my body, too. And I own that proudly, just as I have always owned proudly being a person with dwarfism. And, as my parents raised me to believe and to know, I have always been enough. I matter. I have value. Just the way I am.

  And so do you. Just the way you are.

  Do You Know About. . . ?

  by Eugene Grant

  Many people’s point of reference for dwarfism will be characters out of films or novels—many of them stereotypes—but do you know about these real-life heroes and role models?

  Benjamin Lay, one of the first white abolitionists, who campaigned bravely for an end to slavery

  Perla Ovitz, a proud and defiant Jewish woman who survived the Holocaust

  Judy-Lynn del Rey, a leading science-fiction and fantasy editor and publisher who worked with the genre’s most renowned authors

  Paul Steven Miller, an acclaimed lawyer, presidential adviser, and leader in the disability-rights movement

  Elizabeth “Eliza” Gertrude Suggs, an author in the early twentieth century

  Jahmani Swanson, a basketball player signed to the world-famous Harlem Globetrotters

  What are the best terms to use for disabled people?

  Since every single person is different, there isn’t one definitive answer to this question. The best place to start is to research what each disabled community prefers. Generally, the disability community likes identity-first language (e.g., a disabled person) as opposed to person- first language (e.g., a person with a disability). Identity-first language better represents a disabled person’s experience moving through the world.

  Person-first language is meant to be respectful, but it is rooted in the idea that disability is something negative. It suggests that someone is “more than” their disability, but disabled people note that their experiences are impacted and influenced by their disability. Identity-first language flips the script by acknowledging and respecting a disabled person’s experience in the world.

  Identity-first language is rooted in the social model of disability, which states that our world isn’t built with all bodies and abilities in mind and that it’s not the fault of a disabled person that they’re limited. A Deaf person isn’t limited by the fact that they’re deaf; they’re limited by a world that doesn’t offer accommodations to allow them the same experience as a hearing person.

  The Politics of Hair by Jerlyn M. Thomas

  And It’s Fine

  by Kati Gardner

  Dear Kati,

  First, I totally agree that you would be amazing on a soap opera. Like, what’s more dramatic than a girl with one leg? It would be epic.

  I still love to brag about the fact that you learned how to program the VCR so you could watch General Hospital every afternoon. We have dedication to our fandoms. And writing that Liz and Lucky fanfic in 1999 ended up being pretty instrumental in your life. Who knew that someday you’d write a story about a teenager with cancer and it’d actually get published? All because you sat down and wrote a fic about Liz being diagnosed with cancer.

  Drama club is tough right now, huh? It hurt to know—to really know in your heart—that you would have been perfect in that musical.

  It was a hard day, wasn’t it? Walking to the theater, passing that trophy case and seeing a reflection.

  A girl who had one leg.

  And then realizing it was you.

  Continuing to the mustard-yellow doors, where, like the parting of the Red Sea, students moved so you could see the cast list, which didn’t include your name. It gutted you. I know you cried big tears all over the blue interior of your car. And honestly, it still bothers you sometimes. You weren’t crying only because you didn’t get a part in the show, but because the people who swore it didn’t matter that you were disabled lied.

  For that show it mattered. And they said it didn’t.

  Leaving the cast list, you saw the girl reflected in the trophy case again. The girl with the long brown hair parted down the middle and the wide-leg blue jeans with one whole pant leg tucked up in the back. And your first thought when you saw her? That girl has one leg. God, that must suck.

  She is disabled.

  And you realize in a millisecond that it’s you.

  You are disabled.

  You’re not handicapable, physically challenged, or “a cute girl with one leg.” Or whatever other phrase you’re using these days to lessen the severity for others.

  You are disabled, my friend.

  AND IT’S FINE.

  It won’t feel fine when, once again, you see your name next to “Student Director” instead of in the cast. It won’t feel fine as you count out the eight counts in a dance audition. It won’t feel fine when someone asks a really insensitive question, like how you go to the bathroom, or if you can ever have sex. Yeah, those are coming. Sorry.

  But your body is fine.

  There’s this push and pull. Because you say out loud that it was your choice to have your leg amputated. That you knew it was the best option for you and your type of cancer. And you say all of this with a smile. You explain that even once the surgeons got you into the operating room, they saw that your cancer had decimated the entire femur and there was nothing they could save. You say it was your choice, because there’s a lot of truth in that statement. But there are tiny pricks in the back of your brain that always wonder why it all had to happen. That maybe there was something else to be done, but we just didn’t know about it. That, god, it would all be so much easier if we just had two legs. If cancer had happened to someone else.

  But who?

  You could use a prosthesis.

  But it’s not goin
g to make you abled.

  Go back and read those two lines again so it really sinks in.

  A prosthesis is just a mobility tool, like crutches or a wheelchair. It’s not flesh and bone. It’s certainly not fake—you’re right about that—because it’s a real leg that moves people. But it’s not organic. And it will not move like your leg did. It is not going to change your status on the census or with the world. They will still see you as disabled.

  Kati, I know that you never show the world just how weary you are. Because being disabled can be a time suck. Advocating for basic access. Asking for cups with tops, bags with handles. Defending your need to park in the accessible spots when you’re accused of not really being disabled and then witnessing the backpedaling when you get out of your car. It’s OK to be tired. It’s OK.

  It’s OK.

  So you forgot for a hot minute that you’re disabled. It doesn’t mean anything. It doesn’t mean that you aren’t accepting of it or whatever. You totally accept that you have one leg. You do think that having the other one amputated saved your life. But here’s the thing: the world around you doesn’t really accept it. You’re young, and people will tell you that you’re too young to be disabled. Because obviously, that can happen only when a person is old. Whatever.

  You are talented. But trying to convince all these people around you it doesn’t matter that you have one leg is so hard. They see only what it takes away, not what it adds. That it doesn’t have to be a liability. I think of those productions of Godspell that you weren’t cast in. I think of what a powerful statement it could have been if the director had chosen to cast you, to have the Jesus character choose NOT to heal you. Telling the world with that simple casting, that simple directorial choice, that being disabled doesn’t mean you’re less.

  There are theaters out there for people with disabilities. They will want you. They will ask you to come and audition. You won’t have to work so hard to convince everyone that you’re abled. You’ll stand on those stages, with those lead roles you so desperately want. No one will forget about your disability, and it will no longer be a liability.

  There will be professional shows. Reviews will come in, and one particular performance will be talked about in the Atlanta theater world. It will be noted as one of the best of that year, one of the ones to watch. And in those reviews they will all talk about how you are disabled and how nice it is to see someone with a disability on stage.

  You’ll be getting dressed, and you’ll briefly see yourself in the full-length mirror. And instead of being caught off guard, you’ll see a young woman, her one leg wrapped in a spiderweb of tights, a skirt that is way too short, a shirt that shows off her midriff, hair pieces clamped into her now dyed black ponytail. She will look nothing like the preppy, pink-pearl-wearing person you are. But the thought that pops into your head won’t be about what she’s missing.

  It’ll be one simple phrase.

  This is me.

  You have fought every expectation the world has set for you as a disabled person. You climb rock walls, you do high ropes courses, you audition for tap-dancing musicals. You always try to defy the world. To be someone, anyone, but the disabled girl. You’re going to grow itchy when people refer to your accomplishments only in light of your disability. “Kati, despite her amputation, continues to . . .” or “Overcoming her handicap, Kati will . . .”

  After a while you’ll want to be known for what you do. Not what the world feels like you’re overcoming. Because it’s not like you have a choice. You are doing what you do. You don’t want to be special because of your disability.

  And I think that’s the crux of you, right there.

  You want to be seen, to be recognized, but for the love of all that’s holy, you want someone to recognize you for something other than having one leg.

  That trophy case, where you stood and looked at yourself outside the school theater, is going to linger in your brain for the next twenty years as you navigate the world. You will always be a person with a disability. You will always have a body that’s viewed through that lens. And you’ll strain against the box the world puts you in. You’ll push and fight against the stereotypes of the happy cripple and the depressed cripple, and instead, you will own that you are a disabled person. And that image of the girl in the trophy case will sit in your mind’s eye, and when you’re older, you’ll smile . . . because you can totally be on General Hospital. It would be ridiculously epic.

  Princess: sparkle and twirl and audition and advocate, but never forget that you are a person. Full stop. You are not an amputee first. You are a person. And your body is what it is. And it moves you; it allows you to be who you are.

  I’m not going to leave you with some great challenge to change the world, because that’s bullshit. Remember that girl in the trophy case. Remember the young woman in the too-short skirt.

  Both are you.

  Both are whole.

  Sunshine forever, Princess.

  Love,

  Kati from the Future

  What does accessibility mean?

  Accessibility is the way physical and digital things are designed so that disabled people can use them. Accessibility has two components: “direct access” and “indirect access.” Direct access means a disabled person can use something without assistance, whereas indirect access means a disabled person’s own assistive technology is needed to use the service or item.

  Nondisabled people likely do not think about accessibility in their day-to-day lives. But disabled people do—the label disabled itself makes clear the inaccessibility of a world that’s been built with nondisabled people as the default. Accessible design anticipates the needs of people with a variety of disabilities and strives to create spaces and systems where disabled people can fully participate and thrive.

  Accessible design is not ubiquitous, though, and despite governmental regulations (which differ from country to country and from city to city), it’s not a standard of physical or digital experiences. More often than not, the bare minimum is done to meet requirements.

  Examples of accessibility include wheelchair ramps on stages, closed-captioning for audio-visual experiences, alternative text for visual content (such as photos) on the web, lowered service counters, signage that uses both text and visual icons, handrails along walls, and required use of microphones at events.

  Embrace Your Booty

  by Tyra Banks and Carolyn London

  Tyra: Everyone thought I was on vacation, just letting it all hang out. But really, I was in Australia shooting for Top Model when those photos were taken. People think I got caught during some me time, but child, I was posing. For you.

  Anyway, you might know the photos I’m talking about. Me. In a brown strapless one-piece swimsuit, on the beach, my hair’s flowing and my ass and thighs, well . . . some say those are ummm . . . overflowing. I call it curvy, thick, sexy, voluptuous. But the world called it something else.

  Fat.

  During that photo shoot, we knew that there were paparazzi in the distance. My security was trained to recognize the glare on a lens, no matter how far away, and when they saw that signature reflection of light way up in the trees, we knew exactly what it was.

  Whatever, we shrugged it off. Paparazzi come with the territory of being in the public eye, especially on a beach. A beach complete with a crew of about fifteen people doing a photo shoot. That #squad ain’t blendin’ in. We were some busy people, too. We had eight more shoots and locations to go to in Sydney that day, so we couldn’t waste time chasing the “paps” off every time one popped up.

  After my last shot on the beach, as I was walking back to the location van, a paparazzo had emerged from the bushes and was right in the sand. I said hello, joked and asked him if he got the shot, and I was on my way. I didn’t get annoyed until he showed up at lunch miles away from the beach. “Oh, come on,” I thought. “Can’t th
is dude go bother somebody else? There has got to be some famous Australian around here somewhere. Where the heck is Nicole Kidman when you need her?”

  I dropped some hints to him that he should be done, and he picked up on none of them—not even the one where I straight-up—yet politely—asked him to leave us alone so we could eat our juicy Australian steaks in peace.

  He snapped away through the appetizer, main course, and dessert. So, my team and I brainstormed ways that we could have a little fun with him. As soon as we’d paid the check, we put our plan into action. Everyone at our table pulled out their camera phones and we chased him down the sidewalk, snapping away. We wanted him to see how it felt.

  We were lighthearted, smiling and laughing the whole time, and the “photo shoot” lasted all of fifteen feet. But someone wasn’t smiling at all. My pap was pissed.

  “Come on, dude,” I said. “It’s all love. We were just having a little fun being you.” Then I got in the van, and we drove away and had forgotten all about it as we continued to shoot around the city. When I laid my head on my pillow that night at the hotel, I’d forgotten it all.

  Two weeks later, I landed at LAX airport and was back in the U.S. of A. I enjoyed Australia but it felt good to be home. As soon as the plane touched down, my cell phone was blowing up. Countless texts and voice mails, asking me if I was OK. Was I OK? Of course I was OK. I’d just spent three weeks shooting Top Model and had crowned a cha-cha diva winner who was gonna win the hearts of America and the world.

  But then more messages started to flood in. Messages that revealed what the “Are you OK” concerned ones were all about: me on the cover of every tabloid out there, with headlines like america’s next top waddle and thigh-ra banks and tyra tops 200 lbs!!! I about died when I saw that—of laughter. I thought it was crazy, but I did not take it seriously. But I did recognize that the people who sent them to me seemed to be enjoying every minute of it.