About sashafeather

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

Family Tea Set

This is a story about my Great Grandmother, Esther Linn. During the Great Depression, she needed to order some supplies for the winter but had no cash to hand. What she did have, was a dental bridge that no longer fit her. In this dental bridge were some gold teeth.

She ordered supplies using the catalog from National Bellis Hess, a company similar to Sears. She wrote down her requests in ranked order, starting with Long Johns, and filling in more items below. The company would fill the requisition in order until the money ran out. She sent the gold teeth in with the order to pay for it.

Well, not only did Esther get all of the items she ordered, she got change back. Cash! A rare and precious asset during the Depression.

National Bellis Hess also sent a gift to everyone who ordered a certain amount from them, as a thank you for doing business. That year, the gift was a China set, dishes in white and orange, with a floral pattern.

The Long Johns, winter supplies, and cash are all long since gone, but the dishes remain in my mother’s cabinet. She has replaced any missing pieces by looking for them at flea markets and on eBay. They are a reminder of our family history and of a harder time.

A clarification from my mom: “I didn’t have to replace broken items as we didn’t break any! This was not a set we used often, kept for very special events and I don’t remember many of those!
I bought the extras so that I could create multiple sets. ”

tea set

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Wisdom from Mariame Kaba

I attended a wonderful lecture by Mariame Kaba, who is a prison abolitionist. She tweets under the handle @prisonculture. Here are some of my take-aways:

–Restorative or transformative justice is not necessarily about love, forgiveness, or compassion. It’s about examining and stepping out of the punishment mind-set. You can be mad at someone until you die, and still not want them to be harmed or locked up. This was an eye-opener for me, and refreshing. It’s not that I don’t believe in love or compassion, it’s just that it’s much harder to get to that point than to start from a place of “no punishment”. I think that respect and honoring people’s dignity, is more important than love.

–Doing this kind of work requires that you have a community, a support system of people you can rely on.

–Dialog is not always a good idea. You can’t have an open dialog when there is a big power differential. (This is especially relevant when well-meaning white people think that having tea and talking more will solve everything.)

–Know who your DA is. They have a lot of power.

–Practice hope as a discipline. Make a concious choice to act out of hope.

–Experiencing bad things does not make us wise. It is the examination and analysis of these experiences that brings wisdom.

Tips for managing pain

A few of my tips and tricks for managing chronic pain.

Specific to facial nerve pain:
–I wear the lightest possible glasses
–I do sinus care things, like nasal sprays, eating spicy foods, taking mucinex, using my inhaler.
–Frozen grapes and other frozen fruits act like an ice pack inside the mouth.
–Chewing gum and snacking and drinking cold drinks can help distract me from the pain.
–Lying down and meditating.
–Sometimes I sleep with an ice pack
–Botox was of some usefulness, but what was better:
–A nerve block every three months or so. My doc targets the infraorbital nerve.

Migraines / Light sensitivity:
–I keep the overhead lights off in the apartment, and rely on lamps.
–I wear a hat with a brim when I go out. The hat needs to be big enough on my extra-large head, so it can be a challenge to find a good one.
–Lying in bed and listening to music or podfic with an ice pack on my head or face.

General pain:
–Compression socks. A recent addition to my life and I like them.
–Good quality shoes with lots of arch support.
–I keep an electric heating pad by my bed, and another one by the recliner, so I don’t have to unplug and move it around.
–Fingerless gloves, for typing.
–In general, staying warm is helpful, so I will for example wear leggings under my jeans in the winter.
–Various pain creams like Icy Hot, Ted’s pain cream, etc.
–The freezer has 2-3 ice packs in it, always. I wrap them up in a pillowcase.
–Loose, comfortable clothes. This can involve cutting tags off of clothes, and cutting notches in the necks of shirts. My favorite kind of shirt is the henley.
–If you can afford it, getting a massage or other alternative medicine can be helpful during really bad pain episodes.
–I play video games to distract myself.
–I rest a lot. For example, do the dishes, then sit down for a few minutes. Take naps.
–I keep a stock of various medications and supplements, though most of these are of limited usefulness for my main problem which is nerve pain. Some of them do help with other kinds of pain. I do keep anti-nausea pills and anti-dirraheal pills handy, because they work.
–Audiobooks and comics are a lot easier to read than traditional books when you have impaired concentration from chronic pain.
–Lower your expectations for yourself. Try not to compare yourself to healthy / non-disabled people.
–Find disability community.
–Ask for help.

Why I can’t write a good personal essay

I feel exactly the same. This is an excellent article.

Tenure, She Wrote

I haven’t gotten a pay check since my fellowship ran out in 2017. Funding is scarce for students in the end of their PhDs and scarcer still for international students with disabilities, so it’s not too surprising that I’ve been turned down for everything I’ve applied for.

Almost 5 years ago, I wrote with regard to applications for funding and otherwise:

Use your story and the survival skills you’ve gained to succeed. I use my escape from rural poverty in personal statements to show that I have incredible drive, creativity, and independence.

But I just can’t do it any more. I can’t make my life a funny, moving, educational story for someone else to judge.

I used to follow my own advice. I turned the ways in which I don’t fit neatly into the world into pat inspiration porn. I talked about disability, adverse childhood experiences, being queer in a…

View original post 849 more words

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.

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.

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