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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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!

Nerve block round 2

Today I went in for an appointment to repeat my nerve block.  The doctor and medical staff were all lovely.  But I arrived at about 2:35 and didn’t leave until 5 pm for a short appointment.  I was a bit early but got into a room right away.  Did the intake paperwork and questions.  Then sat to wait, and wait, and wait.  I tried to read my book but felt too tired.  I put my head on my hand, leaned on the desk, and fell asleep.

The very kind medical assistant came back in an apologized, and offered me hot chocolate or coffee, which I accepted.  Then I saw the doctor.  She thanked me for waiting and we proceeded.

I had a vasovagal reaction to the injection.  This means your blood pressure drops, you feel queasy and hot, and you better not stand up because you could faint or throw up.  Faiting is mainly a concern because you could hit your head or otherwise injure yourself.  This has happened to me a few times before, including once when I gave blood.  They lowered the table flat, gave me some cold washcloths, and made me lie still for an hour, monitoring my blood pressure and heart rate.  Even after I was feeling better, my heart rate refused to rise until I got up and walked around with the nurse.  By this time it was nearly 5 pm and my doctor had gone home.

The doctor asked if I’d had enough to eat today.  I said, probably not.  In part I had not planned to sit in the waiting room for an hour; I’d expected to be in and out.  Luckily I had a granola bar, some hard candy, and a water bottle in my bag.

If this goes like last time, I expect to get a bad headache tonight, so I bought popsicles and made sure my ice packs are in the freezer.

Health care can take a lot of time and be a lot of work.

Small activism for people with limited energy or resources

What can we do, as chronically ill people? We are often not people who can plan and lead marches. We generally cannot work long hours. Many of us have trouble with phone calls due to anxiety. Many of us are poor and cannot donate or purchase supplies.

Here’s what we can do.
Link sharing of important information, research and fact-checking.
Emotional labor, such as telling people we care for them, leaving supportive comments, linking to cute animal pictures and music.
Listening to people’s troubles. Using Skype and calling our friends. Sometimes you understand something so much better when you describe it to someone else; you can think through a problem when you talk to someone.
Sending packages or notes in the mail.
Producing fanfic, fanworks, art, etc. Journaling. Creating. Letting our voices be heard. Reminding the world that we exist.
Wearing buttons– making ourselves and our positions visible to the world.
Starting conversations. Being allies as best we can.
Sharing what resources and skills we have. For instance cooking, proof reading, pet sitting.
Taking care of ourselves and each other, because survival is essential. Reminding others to do self-care. Affix your own oxygen mask before assisting others.

More from Susan Sontag

from “Illness as Metaphor”, 1977, p. 85

“But how to be morally severe in the late twentieth century?  How, when there is so much to be severe about; when we have a sense of evil but no longer the religious or philosophical language to talk about evil.  Trying to comprehend ‘radical’ or ‘absolute’ evil, we search for adequate metaphors.”

See again, the use of “crazy” metaphors to describe evil people and evil acts.

Susan Sontag’s “Illness as Metaphor”

page 58

“Nothing is more punitive than to give a disease a meaning — that meaning being invariably a moralistic one. Any important disease whose causality is murky, and for which treatment is ineffectual, tends to be awash in significance. First, the subjects of deepest dread (corruption, decay, pollution, anomie, weakness) are identified with the disease. The disease itself becomes a metaphor. Then, in the name of the disease (that is, using it as a metaphor), that horror is imposed on other things. The disease becomes adjectival. Something is said to be disease-like, meaning that it is disgusting or ugly. In French, a moldering stone façade is still lépreuse [leprous].

This book was published in 1977.  The disease I see most often given metaphorical status these days is mental illness.