About sashafeather

Queer, disabled, white, geeky. Interested in social justice, tv, movies. I have a greyhound dog.

Disabled People on Screen: Dream a little bigger

Disabled People on Screen: Dream a little bigger

By Sandy Olson

Science fiction films are some of the most elaborate art we have access to: they have huge budgets and can involve hundreds of people working on the films. They have audiences in the millions. The stories are projected on giant screens and they have incredible transportive power.

Movies are myth-creation. Unfortunately, disabled people are not served well in these myths. In order to create the futures we want to see, we need to destroy and remake our myths. We need to create new cultural ideas of what it means to be disabled. As a disabled movie lover, and as an ardent science fiction fan, I want SF movies to love me back. I want to be able to stop settling for crumbs. To paraphrase Eames in Christopher Nolan’s film “Inception”: We mustn’t be afraid to dream a little bigger, darlings.

In 2017 I saw the new Guillermo del Toro movie, a beautiful monster fairy tale, “The Shape of Water.” Elisa (pronounced like Eliza), is a mute young woman who communicates in a form of sign language. But the actor, Sally Hawkins, is not mute and is not a sign language user in her own life. Her sign language appears robotic, unpracticed; Hawkins has not spent years communicating in this language the way most sign language users do. It’s awkward in a similar way to hearing an English-speaking actor badly attempt to speak Russian or Spanish, but with an added burn: we almost never get to see sign language on film. It’s a missed opportunity: the director and producers could have hired an actress who knows ASL (American Sign Language). ASL coaches are listed in the credits of the Shape of Water. The film producers spent money on coaches; why not hire an ASL-using actress, and interpreters?

Elisa in this film has friends who are other oppressed people: a gay neighbor, and a black woman that she works with. Both of these people understand Elisa’s sign language. Together they are a coalition who unite to save Elisa’s love interest, an amphibious man.

What Elisa lacks, however, is a disabled community. Sign language users know each other; they communicate with each other; their language creates a community. That is rather the point of having a shared language. Here was another missed opportunity for the film to show us multiple disabled people in community with one another.

Elisa has a dream sequence where she dances with her lover. In this scene, Hawkins sings aloud. The audience is reminded that we aren’t really seeing a disabled person on screen. Perhaps some viewers are reassured– look! In her fantasy world, she sings! As a disabled viewer, I was disappointed. In Elisa’s fantasy, she’s not disabled. It stings to see this. The scene undermines the power of the disabled heroine by, briefly, undoing and erasing her identity. We see her actively wish she isn’t the person that she is. The sequence seems to want to say that Elisa’s love gives her power, gives her voice: but instead it reminds us that disability isn’t valued. Her actual voice, her sign language, is taken away.

In 2017 I went to see the Wonder Woman film. Many of my friends and wider community adored this film, and for good reason. I am not here to tell people not to love this film. But I am a dreamer, and my dreams surpass what I see on screen. I am practicing dreaming a little bigger.

One of the film’s villains is Dr. Maru (played by non-disabled actress Elena Anaya), is a brilliant chemist with a facial difference. She wears a prosthetic to cover scars on her face, a practice that was common in the World War I period, when the film is set. Many soldiers had facial injuries due to shrapnel, leading to the advent of plastic (reconstructive) surgery and brilliantly designed facial prosthetics. It would be fascinating to see this rich history explored in a film. Instead we see a fairly one-dimensional character who plays into the disfigured villain trope.

What is a movie-goer with a facial difference meant to take away from the experience of seeing Wonder Woman? Perhaps she sees herself as the villain, a person spared in an act of mercy by our perfectly beautiful heroine.

“Star Wars: The Last Jedi,” features yet another such villain: the mysterious Snoke, played by non-disabled actor Andy Serkis. Snoke has facial differences and scarring. Star Wars has a long and difficult relationship to disabled characters, and Snoke is merely the latest example. Luke Skywalker is one of the few and welcome exceptions to this trend: he’s a hero with a prosthetic hand. A hero that disabled people can identify with.

When we see, again and again, disabled people positioned as villains, associations form in our brains, creating a poisonous myth that disability, and disabled people, are evil. We learn to avoid or be suspicious of visibly disabled people, and of disability itself. These stories have real-world consequences. People with disabilities endure violence, harassment, and institutional barriers that limit our full participation in society. We are passed over for jobs or fired from jobs. We do not have marriage equality in the United States, because getting married can mean losing disability benefits. Some disabled people labor under legal slavery, earning as little as 6 cents an hour, in segregated workspaces called sheltered workshops.

In many science fiction stories, the fate of disabled characters is that they die. In the infamous final season of Battlestar: Galactica, Felix Gaeta, a character with a prosthetic leg, is executed. Laura Roslin dies from cancer. Officer Dualla dies from suicide. Sam Anders, who has been injured, is condemned to pilot the fleet of ships into the Sun, destroying all technology that might assist disabled people. In the 1997 science fiction film “Gattaca,” the disabled character dies at the end, from suicide.

How are disabled people supposed to cope with futures (or imagined pasts) in which we are represented in violent, careless ways?

In my mind and in my heart, I am dreaming of better myths for us. I dream of worlds where disabled people are fully included. Where disability access is a given, and differences in physical and mental abilities are valued. Worlds where disabled people can be complex heroes in giant Hollywood science fiction films. Where disabled people are in community with one another. Worlds in which we get to live our full lives.

Roger Ebert said in the documentary “Life Itself”: “the movies are like a machine that generates empathy. It lets you understand a little bit more about different hopes, aspirations, dreams and fears. It helps us to identify with the people who are sharing this journey with us.”

What does it tell us when most of the people we learn to empathize with, through these empathy machines we call movies, are non-disabled?

In a capitalist system, a healthy, non-disabled body is one that can work. One is supposed to be a “productive member of society.” If a body is not productive, it is forgotten, or portrayed as bad and wrong, in our cultural myths. An irony of our capitalist system is that many disabled people are unemployed due to barriers involving access to work, or due to discrimination.

In Wonder Woman, there is a nice moment when Charlie, a member of Diana’s party who has PTSD (or, shell shock), cannot perform his duties. “Maybe you’re better off without me,” he says. Diana responds with great kindness: “No, Charlie. Who will sing for us?” While this line may appear to still be focusing on Charlie’s abilities or usefulness, Diana’s tone makes it clear that she is saying: we value you as you are. You are enough.

In Mad Max: Fury Road, Furiosa is a fierce disabled heroine who overthrows her oppressors and saves the day. Game of Thrones and the Star Trek franchise also feature positive portrayals of disabled people. In 2017’s Star Trek: Discovery, a disabled actor, George Alevizos, portrays a disabled character in a minor role. I want every science fiction TV show and movie to follow these examples.

Let us create myths that value disabled people as human beings. Myths that accept bodies and souls in Star Trek’s Vulcan ideology: infinite diversity and infinite complexity. Let us demand more; let us dream a little bigger.

—-
Thank you to dimensionwitch and Jesse the K for reading this essay over and offering feedback.

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It is brave because it is dangerous

Daniel Mallory Ortberg on coming out as trans:

“There was a real weight, even to wonderful reactions. I just feel like I’ve handed you a weapon. And even though you say “I love you, I promise I will never use this bow and arrow which has been specifically fashioned to find your heart,” you’re still holding it. So I felt like I was giving away something that could kill me.”

https://www.thecut.com/2018/03/daniel-mallory-ortberg-interview-heather-havrilesky.html

Anthony Oliveira in his piece, “Death in the Village”:

“Coming out is brave not because it is vaguely “scary,” like a school play; it is brave because it is dangerous. Some people get violent; some punish you financially; some just love you a little less, forever. You let them see the little fraction of yourself that you can trust them with, because you’ve learned love is almost always conditional. Surviving is brave, too.”

https://hazlitt.net/longreads/death-village

Volunteering for LGBT books to prisoners

A little while back I decided to give away all of my mass-market paperback books, because I can’t read small text anymore. My friend Karen suggested I donate them to LGBT Books to Prisoners, a local group. (https://lgbtbookstoprisoners.org/)

Today I took my three paper sacks down to their office. The office was buzzing! It’s in a basement of a community social-justice building. There are shelves full of books, a couple of desks with computers, a bathroom, and stacks of boxes. Four people sat at a table wrapping up packages in brown paper. Other people milled about filling requests and shelving books. I am acquainted with one of the coordinators of the project, and they showed me around.

It goes like this:
Grab a letter from the box. Read the letter, which may have specific requests for genre of book. Look on the form to see if there are any restrictions (such as no hard cover, no erotica, etc).
Fill the order by pulling books off the shelves. There are all kinds of sections, including classics, queer erotica, queer history, mystery, SF, African-American history, sports, etc.
Weigh your books
Write a short note to the person requesting books
Put rubber bands around the whole thing and put them in the pile to be wrapped.

They are aiming for 3000 packages sent by the end of the year.

I loved doing this. Donating my books to this group felt more personal than selling them or giving them to St. Vincent de Paul. I liked hanging around the other volunteers (one of whom is a friend of mine, one I vaguely recognized, and others were new faces). It made me think I should spend more time around queer folks in analog spaces. There is just something so comforting and relaxing about a space like this: social-justice focused, people working together and talking about books; and obviously queer. Plus, there were snacks.

The only hard part was standing on the concrete floor, which hurts my feet.

On not working

Every day, I think about working and not working. It is a lot to process. My life would certainly be simpler if I were working; I’d fit in with other people and be able to have conversations with strangers around that annoying question, “What do you do?” I’d have income even though it’d be small from being a part-time state employee. Insurance would simpler. I would be a little more normal and therefore pleasing, or at least not confounding, to the rest of society in this one way.

In my early 20s, I developed facial pain that no one could explain or treat. I got an MRI of my brain to check that it wasn’t a tumor. I tried taking various anti-spasmodic drugs. I thought moving around might help, if only to distract me, so I left my desk job.

When I was in my late twenties I worked in a lab, at a job I didn’t realize was a toxic environment. I went to a podiatrist to get orthotics, because my feet were hurting so bad that I would sit at home with ice packs on each foot. I developed a constant headache.

I eventually got a job I liked, working on a research study. I had to walk about a mile from my car to my desk. I started getting sicker. One day after I parked my car, I took a short nap right there in the driver’s seat. Then I walked to the library, where I knew there was a sofa on the 3rd floor that I could nap on. I set a phone alarm and slept for half an hour. Then I walked the rest of the way to my desk.

At a later job, I closed the door and turned off the lights. I put my heavy winter coat on the floor and laid down on top of it, because I was feeling nauseous. I knew this wasn’t normal. I didn’t know what to do about it.

I was already getting treated for anxiety, something I’d failed to deal with in graduate school. All of my health problems made the anxiety worse. It was a problem, really a set of major problems, that few could help me deal with. The only people who seemed to offer wisdom were, and are, those in the disability community.

After that job ended, I started feeling a little better. I went to the dog park as usual and talked to my friend Mary, one of the best people I know. She told me that I looked significantly better, and that I should never work a day in my life again.

It was a relief to hear this. I don’t want to work, and yet I do. I grew up a farm kid and labor was satisfying, even fun. I’m smart, and felt from a young age that I should use my intelligence to help make the world a better place: I would do scientific research. I would add my pebbles to the mountain of knowledge, to borrow a metaphor from the book Lab Girl.

Capitalism makes many demands of us. I had reached a point where the demands were too dear. I refused.

I’m poor now, but: “There is no shame in a simple life of poverty,” Uncle Iroh assures Zuko in Avatar: the Last Airbender.

I don’t know what the future will hold. It’s hard to think about. But I’m sure that this is the best choice for me, even if I have to remind myself of that fact every day.

Nerve block #3

My nerve pain was pretty terrible this last week.  I had the attention span for playing candy crush and listening to podcasts.  I still ran errands and did essential tasks, but my mood was bad and I was exhausted.  I took a lot of naps.

I went in today for Nerve Block #3.  It went well.  I’m planning to get these every 3 months.  The doctor said she’d do it more often if need be.  I told her the biggest difference I’ve noticed is that I’m able to read again.  I went from reading only comics and articles in 2016 to reading seven novels so far in 2017.  (I still read comics and articles, but now can read novels again too. I just checked my Goodreads account; and I’ve read 9 novels as of today).

The doctor had a resident with her again, and she explained everything she was doing. I think the combination of listening to her explain the details, and the fact that I had a vasovagal reaction last time, made me a little nervous. But I did OK and only had to lay there for a couple of minutes before I could get up and go. The whole thing was fast and pretty easy. I felt sort of euphoric; my pain lowered dramatically and it was easier to breathe.  Since my pain is often in my nose and mouth, it can be hard to take a full breath, and albuterol doesn’t always help.

The resident said that my case was the most interesting one of the day.

I am waiting for the headache to come, the one that follows after the nerve block and lasts all night. My mouth hurts but so far, no terrible headache. I think it’s just on the edge though. I bought a bunch of popsicles and plan to keep eating them.

Getting sick, getting poor

You cut back on your work hours because you’re sick. Your income drops, but it’s worth it for the extra rest. You know you aren’t getting better; you won’t ever get better.

You cut back on expenses little by little. You already don’t much like drinking alcohol or coffee, so the articles advising you to cut back on lattes or cocktails are lost on you.

You already buy most of your clothes from the thrift store. You stop using the coin-op dryer and hang your clothes on the line to air dry. It makes your shoulder hurt but saves you a few bucks in quarters. You dilute the laundry detergent with a little bit of water.

You share your Netflix and Hulu accounts. You stop paying for internet sites that you used to throw a few bucks at when you liked their service, like Dreamwidth and Flickr. They have free versions available.

You ask your parents for money, again, knowing how fortunate you are that they can help, and that you have a good relationship with them, and that they don’t hold back financial support due to your queerness.

You run up your credit card buying gas. You think about taking the bus more, but the stops and starts make you nauseous. That’s not a new thing, not a chronic illness thing. The school bus made you nauseous as a kid. But it does seem worse now.

You stop working for a while because you get laid off, and anyways you need to take a break: you’re really sick. Sicker than you want to admit to anyone, even yourself. A while becomes a longer while.

Your main entertainment is the dog park (Permit: $32 / year), Netflix ($10/month), and reading fanfic and the internet (mostly free – wireless internet $21 for your share; electric bill $16 for your share). You use the library more and more for comics and the occasional movie.

You reluctantly go on food stamps. You notice yourself eating the heel of the loaf of bread, which you used to give to the dog because it was “all crust”.

You ask your friends for help paying your medical bills and other expenses. They come through, and you think about how fortunate you are.

You feel guilty.

You learn about anti-capitalism. You feel less guilty.

You learn about the emotional costs and structural sources of poverty. You begin to feel empowered.

You read about the Mortgage Interest Deduction in the New York Times Magazine. You get angry, and anger is fuel.

You stop and get a fucking ice cream cone.

Accessibility and Gaming, part 1

I have been getting more into gaming lately. It’s the best thing to do when I’m especially ill because it distracts me from feeling terrible, and it’s just plain fun. Naturally, I think about accessibility in gaming.

I usually play with the sound off because I’m not super into the music on games. When on my PC, I’ll listen to my own music while playing. I have arthritis and some dexterity-driven games are not for me. Very stressful games aren’t for me either. The games below, I played on PC and purchased through Steam.

Stardew Valley: This is a wonderful, low-key game that involves farming, fishing, mining, and scavenging, and occasionally interacting with villagers. You can play at your own pace and sound is not required. I use my mouse left-handed*, and this game is designed for a Right handed mouse. Although I found a page for switching keyboard commands, I couldn’t find a way to switch the mouse buttons. I ended up leaving the mouse button commands alone and still playing Left handed, and switching the keyboard commands to accommodate my right hand being on the keyboard. Fishing is difficult and requires dexterity. However, there’s a mod that makes all fishing easy. I downloaded and installed this mod with the help of some internet tutorials. I played this game a lot and it was very relaxing.

Undertale: I gave up on this game mostly because it requires high dexterity. I admit that the art wasn’t really my style either.

Never Alone: I gave this a try and it was rather stressful, as it involves a lot of running away from polar bears and such. The game play is also sometimes difficult and requires dexterity, and again I was using left handed mouse which didn’t seem natural for the default controls. It’s very beautiful and I might try again someday, but my favorite parts were the “cultural insights” (Northern indigenous people talking about their cultures) which I could probably just watch on YouTube.

*I am not technically left-handed; but I have pain in my right shoulder so made this switch years ago. These days my left hand is my “good hand”.

post is to be continued as I have more games to write about!