Don’t Call Me, Maybe

In the 1980s, my family had a black rotary phone that sat on the wall in the corner of the kitchen. I remember learning about 911, and how we joked that it would be faster to dial 111, as the 9 had to go all the way around the circle and back. The dial made a neat noise, sort of a rattle.

The phone had a little counter where the phone book and various papers sat, and below that, a square metal grate through which hot air came into the kitchen. This was a great place to sit: warm air on my back, a cozy little cubby, and a good view of whatever was going on in the kitchen. My mom would talk on the phone and the long spiral cord stretched out. I’d wrap a bit of the cord around my fingers.

I remember getting caller ID and using *69, which would tell you the phone number for the previous incoming call. For a little while, we had calling cards, for long-distance phone calls. I rarely if ever used a phone booth.

I don’t think I ever really liked talking on the phone the way that some people do. It was fine, just a necessary task rather than a pleasure. In contrast, I took to the internet. In high school and college I made friends on Bulletin Boards, chatted with classmates on AIM (AOL instant messenger), and even made a rudimentary website for myself using HTML. The internet was so visual and colorful; absolutely mesmerizing.

I got my first cell phone in graduate school, when I spent a summer in Iowa doing research in 2004. It was a flip phone, which I loved because it looked like a Star Trek communicator. I learned to keep it on all the time and plug it in at night. I learned to leave it in the car if I went to a movie, because if I turned it off, I would forget to turn it back on. The one phone call that stands out in my memory is talking to my Dad, who had just watched the Democratic National Congress on TV, where Barack Obama spoke. “Talk about the next president!” he said.

I eventually lost my flip phone, and got one that had a keyboard. My girlfriend at the time was pleased, because now I could text her back right away. It no longer took me 5 minutes to compose a text using the number pad. This was 2010.

My last non-smart phone, also one with a sliding key board, started to fall apart from wear and tear in 2018. It permanently turned itself to vibrate-only, and the space bar key wore out. It’s time to get with the future, I thought. It’s time for a smart phone.

My friend got me a smart phone through a program called SafeLink. It’s a free phone. I’ve had nothing but problems with it. A few weeks ago, I came back from the dog park and noticed something going on at the neighbor’s house. My neighbor’s father was having a seizure on the front step. “Please help!” she shouted. “My phone won’t turn on!” I ran inside and grabbed my phone. I ran back outside and dialed 911. The call dropped. (Cell phones, they told us, were the way to go. They’d be great in emergencies!) I was able to call back, and my neighbor was able to get her phone working.

This was an anxiety-inducing event. This event, along with a few other problems, has meant my phone phobia has gotten worse and I’ve developed a hostile relationship to this object. I’ve been largely unable to make phone calls for months, which has been a real problem.

When I started a new job, I noticed that I was able to make phone calls from the desk phone. It simply feels different than using a cell phone. The cell phone disappears from my view when I hold it to my ear, so it feels like I’m talking to the air. It’s the opposite of a visual experience. Talking on a cell phone in particular feels unmoored, distant, adrift; I’m a person that likes to feel grounded.

I admit I do enjoy having a pocket computer (see today’s Dinosaur comics: http://www.qwantz.com/index.php?comic=3319), for things like Google maps, but I don’t enjoy having a “smart phone” because it doesn’t work as a phone. I want to go back to a house phone. Perhaps this is party because I those warm memories of the heating vent and the long spiral cord, of listening to my mom talk to her friends. Of my family gently arguing over who is going to be the one to call and order food. The sturdiness of the object itself, they way you can tilt your head and hold the phone between your ear and your shoulder, if you need both your hands free.

Objects in our lives are imbued with emotion. I want some of those warm emotions around the tools I use to communicate. I have such feelings with computers. Writing to communicate– via email or twitter or blog post– is so easy for me that I barely have to think about it. I imagine phones are like this for other people, though admittedly it’s hard to really imagine what that feels like.

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Mixtape podcast: “Our love is better than your love” – Anthony Oliveira

Transcribing a brief portion of this podcast (https://www.megaphonic.fm/mixtape/15). The context is, they are talking about Magneto and his politics and portrayal in the X-Men comics and movies. When someone comes out, Oliveira likes to tell them this Magneto quote: “You are a god among insects. Never let anyone tell you different.”

Anthony Oliveira: The scripts will always betray him. They’ll always make him look like a bad guy. But you know what? He makes some good points! And that’s one of them. Which is that I am sick of narratives– I’m sick of walking, even today, down Church Street and seeing “love is love”, because Fuck You, my love is better than your love. You know WHY? My love Cost More. My love almost burned my life to the ground. What did your love ever Cost you? That makes me upset. And That to me is important, that when a queer kid comes out, they should know that they did something most people don’t, and a lot of people don’t survive. And that matters to me, like that Magneto quote is the flip side. I talk a lot about us being pissed off cockroach mother fuckers (https://twitter.com/meakoopa/status/742238554093281280) and it’s true, like, the world has been set against queer people our whole lives, and some of them didn’t make it. And the ones who made it are the Tough Ones, and you’re gonna have to deal with that.”

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.

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.