Back in the saddle!

The last few months have been rough but I’m feeling much better and am back at work. Today, I appreciated that even though it was cold and raining, I was able to do all this:

* have coffee in the morning
* eat some toast
* work and feel like my brain was back online
* go out on my scooter to a cafe with friends to co-work
* delicious lunch at cafe
* went up and down the stairs twice to do laundry

All without painkiller and did I mention how nice it is to eat real food again after 3 months of gastritis (crackers and broth)? Food is so amazing. I’ve been thinking over my gratitude towards my friends and family for being around and taking care of me while I was so sick. My employer was super understanding about things too, which I appreciated.

Internally I battled the feelings that it was my fault I was so sick and simultaneously that I probably was not really so sick; if I just exerted more willpower I could magically overcome it. Neither of those things were true of course. It’s easy to know that intellectually without being able to believe it wholeheartedly. It is a flaw and a strength that I like to keep the illusion of control. Now that I feel better, I can look back and believe: OMG, I was incredibly ill and weak and unable to eat or barely move around! Every night I think for a minute how I got to the point where I couldn’t straighten out the blankets by myself. Ugh. Fuck that!

Meanwhile my friend Ron has been in and out of the hospital. We ended up in the same hospital on the same floor as next door neighbors at one point which was pretty hilarious. As so often over the years we’ve known each other he was someone i could rely on to chat with and know he totally understands, way better than I know it really, the experience of just carrying on with your life and interests and feelings in the middle of illness, pain, or physical limitation.

I often think over how many times I have been sick or extra limited in mobility and been afraid I will never bounce back. I have always bounced back! I am a badass! Even if I won’t get younger or any less disabled I will remain inherently BOUNCY. Keeping that in mind for next time. (Obviously, having money, support, privilege, and decent medical care also helps; I’m very lucky.)

Here is a photo of me holding up a giant table saw while wearing a tshirt with a stencil of a person in a wheelchair with flames coming out the back,

table saw

My extra nice news is that I have been driving my car a little bit, 10 or 20 blocks at a time. I’m not able to do that every day and it makes my leg and ankles hurt but wow it’s fun. I was right on the edge of selling the car. I had this moment driving the car back home from Double Union one night where i was singing along with Fairytale in the Supermarket and some other Raincoats song and crying at how nice it was to drive 20 blocks in my car independently. Ridiculous but true and I’ll never forget the feeling. Now I’m back to sometimes driving and using my manual wheelchair, which isn’t really better than scooter + bus, just different. I feel more nimble and sporty in the manual chair. It’s more fun for me if I’m indoors or have only a block or two to travel. It also makes taking a cab by myself easier to do, since I can disassemble and lift my manual chair (a Quickie Ti II) without any fuss. Going downhill once in a while is really fun (speed!!) and I love to balance and do wheelies, and the lights on the front wheels.

During the illness I was on a lot of painkillers and just needed to pass the time. I played Hoplite a little bit, nethack, and read all of Agatha Christie’s published detective novels and short story collections, taking notes on each book and vaguely thinking about what her stories reflected of history and social change. It seemed like a good “i’m going to be ill for at least 2 months” non-taxing goal. I felt a little sad to come to the end of her work. But not quite sad enough to find the paper versions of her romance novels that she published under the name Mary Westmacott. Maybe someday through the library.

My sacroiliac issues are acting up so it is tormenting me to be in pain all down my leg. Think “cranky old lady with sciatica”. The nerve pain makes my right leg cold-sensitive to the point where just room temperature air feels like a million ice needles. And sometimes my leg collapses without warning. Fuck that! Thank god the pain clinic moved up my back injection a month, so I get it next week (steroids + anesthetic in the s-i joint, takes me down for a few days but then is amazingly effective). I always forget how it is. I am nearly desperate enough to go back on lyrica or cymbalta or something. Nearly. Crazed with pain sometimes over here. Yet still functional to walk around. The last injection was in I think early October so I’m overdue for it. Maybe someday they can just fuse that thing or put in a metal plate or something. It seems like a very stupid and useless joint to have arthritis in.

Double Union is completely awesome. The kids and Oblomovka are great. I’m enjoying work and messing around with Python for work, looking forward to PyCon in April.

My hope now is to be able to keep up this pace of leaving the house a few times a week, make it into the office regularly, and start swimming again at the YMCA downtown. OK hopefully that’s off my chest now and I can write about other stuff like books, games, hackerspaces, feminism, and work!

Bad inventions: The purring electric blanket

This terrible invention fits well into my usual purview, cat-related ridiculousness — like dead mouse cat treats, sugar cereal themed cat litter, and of course the ever-popular Catula.

Instead of horrible genetically engineered “bed dogs” that are like animal exploitationy meat-based waterbeds (Thanks but no thanks, Larry Niven), we should invent purring blankets. Take a regular electric blanket. Cover it in fur. Add strips of gently vibrating or thrumming devices, and sensors. When the blanket senses your proximity, it heats up. If you stroke it, it purrs.

Here is the perfect opportunity to use fremitus.com, if you happen to own that pointless domain name. (WHICH… right now… no one does. No one loves fasciated tiger herons, or what?)

This will make me ONE MILLION DOLLARS someday along with all the other millions of dollars my other bad inventions will magically bring.

Robot angst

Hanging out today talking about Google’s acquisition of Boston Dynamics me and Adina and Danny were thinking of what they might be used for that isn’t scary-creepy military combat or warzone bots. Here’s a few!

Disaster relief and emergency rescue. Locating people in rubble or bringing supplies into devastated areas. This is probably one of the purposes of these bots but I haven’t tried to find out.

Mapping stuff offroad. (Useful for geological surveys as well as for disaster recovery and outright spying).

“Fix My Street” style monitoring of urban environments, like reporting potholes or broken streetlights. Problem with this: Scary robots running around wearing out the roads and sidewalks.

Soil or water sampling along a shoreline to monitor pollution. I’m not sure if this makes much sense as it might be more reliable and cheaper to have sensors collecting data at fixed locations.

Junkyard bots that roam around in garbage dumps finding things that are recyclable or otherwise useful (or toxic). I thought of this watching how they can climb around on rubble.

Warehouse fulfillment and packing things for shipment. This seems quite possible!

Robot unicorns to replace taxis, Uber, and Lyft. There would obviously be a phone app to summon your robot unicorn to give you a ride anywhere around town. Google employees could summon a giant caterpillar or chinese dragon style segmented robot you could ride on, or one you could go inside like Catbus, that would whomp down the robot lane of Highway 101, in place of those white google buses.

Delivery robots. Residential buildings would have locked slots built in and businesses could have little locked cubbies for delivery bots to pick up people’s stuff. It would become trivial for a robot to just deliver you coffee from the cafe down the street. Of course this all leads to a world where robots need to find free wifi and electrical outlets for charging, which would further lead to us realizing there are little robot hangouts all over the city, the way people congregate around the deep sea vent nutrient rich environments of power outlets and hotspots in airports.

Feral robots which can feed off power on people’s solar roof thingies or from powerlines and survive in the wilds like rats and pigeons. The jumping sand flea bots would emerge at night to tap into lamp posts for power and then scuttle and leap back up to roofs like rats on the prowl.

Robots that go to holiday parties when you are too sick to go and project a Princess Leia sort of hologram of you saying hello and sending your regrets. Then they would scarily whip out a plate of cookies. Introverts might just have their presence robot host the party and you might end up with a whole den full of robot partygoers. Uh oh!

The angst from the title of this post is from (re)watching the videos of Boston Dynamics robots and narrating the robot’s probable sad-Dalek voices. BAD MASTER NOT KICK BIG DOG – BAD KICK MASTER NOT LAUGH ROBOT STUCK GOOD ROBOT…. I am too lazy to make the twitter account to do this, so please take it and run.

More time spent in bed, with books

I am still suffering from Mystery Abdominal Pain and severe nausea. I spent a couple of days in the hospital which helped me get hydrated and have a bit more pain control. This week I’m having more diagnostic tests, resting and sleeping a lot, and trying to make myself eat more than just broth. It is painful, frustrating, scary, and boring. Part of the scare is that I’m not able to eat much (total loss of appetite), the cause is still unknown, and because I’ve been on immunosuppressants for a year it is important to be vigilant for infections and yet the body’s response to infection can be really weird. The hospital I was in was nice as hospitals go, and I think the team of doctors is fantastic, really working as a team and with a smart, science minded, investigative approach. They are also all very good communicators so I feel quite lucky. I am well equipped to handle uncertainty and being stuck in bed, and have vast resources and social support. So, I am okay.

The worst bit of being in the hospital (besides it feeling like every hour was a month long) was having IV Reglan, which I had a bad reaction to. Within 5 minutes I was catapulted into a state of trying to control a feeling of panic and frenzy, like the worst acid trip you can imagine. After about an hour and a half of that, they gave me Ativan which countered it successfully, and more morphine.

I’m very grateful to my friends for sitting through some painful and boring times with me, for their driving me around, sitting with me in the hospital, and spending the night with me at my house to make sure I’m ok.

My friend Ron who had surgery last week ended up in the room next door to me. His wife Helen showed up at my bedside in the night, held my hand and brought me tea and did other little things like that.

Meanwhile, I miss work. Is that weird? I really miss it. I am missing 2 team workweeks that I was looking forward to and getting to be with my team members in person.

Double Union buildout starts for real this week, and I will miss that. But I am doing what I can as secretary and board member. We have over 25 dues paying members now and more folks in the application process. It’s very, very exciting! I can’t wait to just be there and hang out with everyone.

I have ordered xmas presents for everyone online and also found that I can get whole foods groceries through Instacart. I am going to try to eat baked fish today. Anyway. I will try not to go on about food.

Here are some of the books I’ve been reading:

Strange Evil by Jane Gaskell. This book is AMAZING. She was 14 when she wrote it! It’s like Huysmans’ Against Nature in its manipulation of atmosphere and yet it does it in a wider range — forays into something like baroque positivity rather than always dwelling in things sly and perverse. She does it without being twee. During the quite extended journey scene I thought of Tolkien’s descriptions of sailing to the West; Gaskell at age 14 does that sort of thing, but at greater length, and better — never boring! Gaskell is a passionate visionary, and breaks many conventions of fantasy writing — also she has my undying love for having outright class warfare in her her fantasy utopia.

Sensation by Nick Mamatas. This was hilarious, fast moving, and engaging. Conspiracy novel where a superintelligent spider hive mind has been fighting neurotoxic wasps for thousands of years. Some humans begin to figure this out. The gazillion current cultural references made me laugh a lot, sometimes in embarrassed recognition I fit some of the stereotypes. The scene where the ludicrous middle class activists are lying around playing the game that’s the opposite of “Civilization” probably made me laugh the hardest. I was forced to go look up the city of Hamilton! on Wikipedia; as I hoped, it was all true….. I also enjoy when the style veers into hardboiled “A man walked in the door with a gun in his hand” territory and then gets more and more surreal. After I read Nick’s books I always kind of want to make him cookies and give him a hug to get him out of being such a nihilist. Anyway, this book will make a good holiday present, for people who like science fiction, amusing and clever writing, and who have a penchant for saying wry things about Occupy.

Hild: A Novel by Nicola Griffith. This was seriously great. I though many times of Kristin Lavransdatter, of Mary Renault’s books, and a bit of Mary Stewart’s Merlin books (which are good though not up to this quality level). If you like accurate well researched historical fiction that is centered on women’s lives, and you are fond of the fiber arts, you will probably love this book fanatically and it well deserves that love. I’m going to buy a paper copy of this for my feminist hackerspace! p.s. Hild is an amazing badass. p.p.s. After you finish the book there is So Much History to poke into, so that it’s a joy to surf around and go deeper.

Updates from the polar regions

It’s been a while! I went off to the 40th anniversary celebration of the Center of the Study of Women in Society at which a bunch of feminist science fiction writers and critics were nucleating around some of our fabulous luminaries. I hung out and talked with Timmi Duchamp, Andrea Hairston, Margaret McBride, Alexis Lothian, Joan Haran, Hiromi Goto, Larissa Lai, and said hello to Ursula LeGuin and Sally Miller Gearhart. So that was amazing. Day 1 of the conference was feminist activists and academics in general, not just science fiction writers. The University of Oregon has a lot of feminist sf writers’ letters and papers, and Margaret taught a Tiptree Award class for many years, so it’s collected a lot of mojo with the west coast WisCon-going folks. That will probably continue to build!

I live-twittered both days of the conference and then meant to write it all up, but I got ill just after getting home. Here are the (over 200) tweets, with lots of interesting links and people to follow, and occasional humor: http://storify.com/lizhenry/worlds-beyond-world

My mom visited, and bought me a huge amount of wooly underthings from REI. I was frustrated at my lack of physical stamina to go out and do fun things with her, which in retrospect was because I was already getting ill.

For the first two weeks of being sick I took my antibiotics and worked from home, going out very minimally, and after a day in the ER I am on different antibiotics and sicker. It is unclear if this is something antibiotics will help, or if it is related to my autoimmune issues (aka, arthritis with complications). I am in a lot of pain and have to stay lying down in bed, a situation I really don’t like but in which, fortunately, I have the entire Internet and a lot of books to entertain me and nice family and friends to help care for me. So, I’m both fine and not fine. Sitting up is painful. I am dizzy and can’t eat more than broth and a little rice so I’m not feeling strong. I fall asleep a lot. More tedious doctor appointments are to come. I try not to worry, though I am so far behind at work that it’s stressful to contemplate. Parenting and taking care of myself is also hard. I am crying a lot out of sheer exhaustion and also fear of whatever is going on which is uncertain. Oh well. Been there before! I remain cheerful on the whole.

On the up side, lying in bed is relatively good for my ankles. Maybe it will help them heal up better. I can’t prop the laptop on my stomach, so am mostly sideways as I type or read stuff on the computer.

During this, we launched a quick 10-day fundraiser for Double Union’s buildout, hitting our $5K goal in under an hour, and topping out at just over $15K. OMG, I love my feminist hackerspace. Look at our gorgeous little website: http://www.doubleunion.org/ We have 25 members already and aren’t even open yet. This week a lot of people who aren’t me will be ripping out the carpet and moving all our furniture in and out. Then we will be ready to build shelves and buy tools. Then we can open. YAY!!!

In the interstices of that I have listened to a lot of music (currently on a Serenata Guyanesa kick), played some Plants vs. Zombies 2, watched Milo play Myst, poked around on Wikipedia, and read quite a few books. Here is a partial list. Sometimes I can think and sometimes I am just spacing out. If I can focus and read then it’s mercifully distracting from pain.

* When Fox Is a Thousand by Larissa Lai
* In Darkest Light by Hiromi Goto
* Trophic Cascade (short prose poems by Hiromi Goto)
* The Summer Prince by Alaya Dawn Johnson
* We Are All Beside Ourselves by Karen Joy Fowler
* Missing Links and Secret Histories: A Selection of Wikipedia Entries from Across the Known Multiverse ed. by L. Timmel Duchamp
* Gaia’s Toys by Rebecca Ore
* Great post by Skud, Why is it so difficult and expensive to make your own clothes (or have them made)?
* An entertaining close reading/critique of The Hunger Games
* Bud, not Buddy by Christopher Paul Curtis (Ada’s book for school)
* Black Boy by Richard Wright (Milo’s book for school)
* the first and second Alanna books by Tamora Pierce (millionth time)
* Diaspora by Greg Egan (reread) (Thanks Taren!)
* Polar Journeys Ed. by Jon E Lewis, which Val brought me in a large stack of awesome books

The Polar Journeys book is 42 short excerpts from various explorations and voyages in the Arctic and Antarctica. I’ve read some of the sources on previous reading binges and am very fond of this sort of book in general (primary sources, misery and suffering, scurvy or starvation a plus) For example I have read and re-read various versions of Hakluyt’s voyages and all those Vilhjalmur Stefanson books and then when my ex went to the South Pole with his experiment I read every single Antarctica book I could find including the one about the International Geophysical Year by the guy who invented the idea of wind chill. Some of the great stories in the Polar Journeys book were ones I’ve never heard of. The story of the Arctic voyage of the dirigible Italia, the sad balloon expedition of Salomon Andrée, and the last days of George W. De Long were pretty great, especially from a warm bed under a down comfortor and a heating pad.

The best story so far has been George E. Tyson’s diary excerpts from the Polaris Expedition. His style is… like a regular person with some common sense, trying to figure out what the hell to do, instead of like a pompous observing scientist or wannabe heroic expedition leader. He and 18 others, including 2 women and their 5 children were adrift on an ice floe for six months. Since yesterday I’ve been obsessed with the details of this expedition and its background and all the people in it getting to the point of non-minor edits to Wikipedia, starting with Tookoolito and her husband Ebierbing. The expedition head, Captain Hall, died, very likely from being poisoned by another crew member. (Someone made a whole other expedition years later to dig up his body and test it for arsenic.) This guy Tyson, who had been a whaling captain, suspected that the remaining leader, Captain Budington, deliberately stranded him and the rest. It backfired on Budington who got stranded anyway with the 14 remaining crew members. ANYWAY. Tyson describes the total screwup that is their life on the ice over the Arctic winter. He blames the German crew for most of the mistakes. They would have died SO fast if the Inuit folks with them had not built them igloos and shot about 50 seals. And probably sewed them clothes too.

I could go on forever but my main two points are:

Tookoolito, Taqulittuq, or “Hannah” was a total badass. Her family had a long history of contact with whalers and voyagers. Her husband Ipiirviq (aka Ebierbing or Joe) and daughter were also pretty great. I will keep working on their articles. And make ones for the others who don’t have articles like Merkut (Suersaq aka Hans’s wife, who seems to have had 4 small children with her through all this!)
– Histories of Hall and Budington and the whole lot of them are often not very well researched. News articles, biographical dictionaries, and yes Wikipedia entries quote each other’s inaccuracies till I want to scream. Hall and Budington had voyaged together a bunch before. They appear to have been somewhat in conflict as to who was the best friend, benefactor, and exploiter of Tookoolito and Ebeierbing (and family). Even after they were dead I think something fishy is going on with many of the claims of who their patron was. It will likely not be possible to find a truth about this, but tracing the claims would be really fun. I have found sources to claim, as a minor example, that either Budington, Hall, or Ebierbing himself bought the Ebierbing family home in Connecticut. One interesting project here, which I invite any of you to take up and work on, is I think finding and digitizing Tookoolito’s letters from Nyack, NY to Mrs. Buddington in Groton. For one thing, the quotes from her letters don’t match with the register or grammar of how she is represented as speaking in English by Hall and other contemporaries. Anyway, most people interested in this seem stuck on the more flashy controversy of whether Charles Francis Hall was murdered or not, and if so, who did it. I am more interested in the story of the Inuit people and their families and the arcs of their lives and whatever they may have to say. I love tracing that “Puney” or Punna = Panik = Sylvia Grinnell Ebierbing = Iseeatpo or Isigaittuq. As always the fluidity of identity in names across language fascinates me. It is one of the little keys of subalternity (as I explored in my Wittig project and my anthology of Spanish American women poets). (Obviously… this interest or ability ties in to my interest in hoaxes and sockpuppets!)

Details of nearly everything about the people and the situation are also just lifted uncritically and unsourced. For instance the name of the guy who brought Tookoolito and Ebierbing as young teenagers (with some other kid) to England is listed in some sources as Thomas Bolby and in others as John Bowlby. That one shouldn’t be all that hard to straighten out from primary sources! Other screwups…. I can’t even count them. People are slobs, and truth is more elusive than you might think. The best writeups on this so far appear to be from Kenn Harper, whose clarity I appreciate. Thank god someone has some sense out there.

Once I finish these three books I’ll have a lot more Wikipedia editing to do. (Thank you Internet Archive!)
* Narrative of the North Polar Expedition, U.S. Ship Polaris, Captain Charles Francis Hall commanding (1876)
* Arctic experiences [microform] : containing Capt. George E. Tyson’s wonderful drift on the ice-floe : a history of the Polaris expedition, the cruise of the Tigress and rescue of the Polaris survivors : to which is added a general arctic chronology (1874) (READ THIS… it is AWESOME)
* Memoirs of Hans Hendrik

Geek Girl Con, Saturday!

I’m at GeekGirlCon today!!! It’s awesome! 3rd year in a row!

I spent yesterday in The Attic, Seattle’s feminist community workshop/hacker/maker space. The Attic’s booth here at GeekGirlCon is representing the space’s combination of fiber, art, tech, robots, geekiness, hacking, and making things very beautifully and there are tshirts and stickers! That’s where I’ll be on Sunday morning and part of the afternoon, orbiting between the games area, the Art Alley, and The Attic’s table.

the_attic_seattle.jpg

Here are some quick shout outs to people I talked with today and cool stuff I saw.

Heroes & Inspirations who make jewelry and art. Their new Ladies of Science series is great. There’s a Heroes and Inspirations Ladies of Science Kickstarter! I’m definitely backing this project and want several of the wearable tributes to admirable scientists!
Stasia Burrington who has a print (and tshirt) of a woman in a pile of cats and another that I love that is kind of the same concept with books. As I look through her etsy shop I want to buy a zillion prints… her work is so charming!
Bhaloidam, an interesting board game that is a storytelling RPG.
BigBrainedSuperheroes Club, a STEAM education organization!
Monkey Minion Press who have very beautifully done posters with SF retro WWII themes, often somewhat creepy.
ReelGrrls who are working with young women to teach video production skills and to support their work as film makers.
Women’s Funding Alliance which is a big philanthropic collective.

I got to talk a bit with Tempest who was on the panel “Changing Culture in Mainstream and Alternative Spaces” which I thought of as the “safer spaces” strategy panel. The panel was good. I also met up with Sigrid Ellis who I know from WisCon and who is now editing Apex Magazine. In a totally lucky random encounter I ended up talking intensely with Elsa S. Henry from Feminist Sonar and went to her Disabled Geeks panel which was not in the schedule booklet but which was well attended. Here are my notes on the panel! They’re a bit rough and were basically liveblogging that I have not fully edited.

Elsa and Stevi Costa are speaking on the Disabled Geeks panel. Elsa’s talking about comics and characters with disabilities. Disability is used as a narrative crutch. The words “inspiration porn” are also being tossed out there . . . for those of us who might be hate-watching things like Glee or watching Push Girls. (Audience LOL, ruefully). Disability is too often used as a metaphor for overcoming obstacles. It’s rare to have a character born with a disability who did not get bitten by a radioactive spider but has been how they are since birth.

Discussion of the Glee character who is a wheelchair user who is played by a non-disabled character. Elsa describes the horrible scene where he gets up out of the wheelchair and dances, which many people felt was a huge problem, since you don’t have to miraculously get out of your wheelchair in order to dance. You can dance while using your wheelchair or while you have whatever other impairment you happen to have in your life. Your dreams may be things that you can actually fucking do. Etc. An audience member describes her teeth grinding as the pretty girl gets to walk across the room getting out of her chair in some other episode. As if, aww, the other guy is the loser in the chair. There is also an Xmas episode where the guy wishes he could walk. Critique of the “walking” exoskeleton thingies. My personal reaction is that I am kind of glad I have never watched this show.

“Yay, accepting our cyborg bodies and then we become your OVERLORD.” *audience cheer*

Something something crip sex. (I had lost the thread, but start paying attention at these words…) “How did that feel to you?” “I dunno”. It was amazing but it just can’t make up for that dancing episode. Another episode where bullies take a blind person’s cane away. That was a painful moment for Elsa since people have done that to her deciding that she doesn’t need her cane so that they can bully her. Invisible disabilities represented, for once the character with Downs Syndrome is played by an actor with Downs. Great character usually but the school shooter episode was incredibly bad. Inconsistent with the character, makes it look like PWD have no future after the insitutional support of childhood and youth. Yes there is fear but they blew it out of proportion and people said online “I wonder if that’s going to happen at my school”. It represented disabled people as violent when actually we are often the targets of violence.

How about Oracle. (I cheer). Elsa loved Oracle, a great superhero with disabilities. And then they took her away. Oh, you’re disabled, you’re like one of the X-Men. No actually I’m not. And Oracle was a woman with an actual disablity who lived with her physical impairments.

In contrast in the Daredevil movie, she lasted 2 minutes, the movie was too much. “My nickname is snarkbat, I use snark to echolocate.” Why doesn’t he use the cane while he’s in the costume!? I’d like to see a superhero who uses a cane. So I had someone make me one. People with disabilities should be able to cosplay anything they want. My blind cataracted eye is not a special effects contact! Please do not ask me where I bought my own eyeball. Then I will tell you I bought it at Rubella and you will feel like a jerk. I’m playing Odin today. (Elsa holds up her cape with a raven (Munin) attached to the shoulder.) (I asked her earlier if it was Hugin or Munin) People ask Hey where’d you get that awesome contact, they assume you couldn’t be disabled so you become strangely invisitble again. Elsa asks for abled bodied people to not cosplay disability. It makes many of us really frustrated. We need to be recognized and read as people with disabilities. If you are playing disabled with your pirate eyepatch you are making the world worse for people who actually need to wear one. The fictionalizing means the people aren’t reading us as real.

Why would you go to all the trouble of finding visually impaired young women to play helen keller but as the understudy for the not-visually-impaired main actress who got cast for the role. There could be the name recognition if you start casting us in the roles.

Cons and accessible space. Getting trampled and pushed around in crowds. This con is good. People are educated to the point where they are not pushing into people in wheelchairs, people with white canes. This con has an introvert alley so people can go have some quiet space. We have a wheelchair lift here at the stage. (though . . . no one on stage who is a wheelchair user. . . .) Stevi asks Elsa when she goes to larger cons that don’t have any focus on inclusivity do you feel that you become invisible? Geek culture is not as inclusive as it is supposed to be. That is why Elsa does not like to go to cons. She doesn’t like feeling invisible and being trampled. She lives in NYC and is used to that environment but to come into a safer space where it’s “our people” it would be nice not to be run over. (I so strongly agree!! This feeling only grows in me that we have to insist on respect from our communities.)

Audience question about therapy dogs and fakers. Yeah Hmmmmm. Panel handles this question with perhaps too much patience. OK I popped up and asked the asker if she has a special need to police whether people are really disabled or not or a concern over being allergic to dogs or dog phobic so it becomes an issue for her or people around her. Come on. Is this the moment?

Elsa talks about how she wears glasses and can see partially. People go Hey are you really blind? Yes. they don’t give white canes out like candy and I really need it. People come up to me at cocktail parties and ask me how many fingers they are holding up. People just take my cane because they are curious. It’s not okay to just investigate my disability. Peeople with disabilities are not public property. We are human beings. TELL IT. Stevi adds that we narrativize it to where the story is that you have gone from being able-bodies to disabled and that is the dominant story.

Aud comment about being happy to be talking about people who were born with disabilities and glad we’re having this panel. She wants to talk about more pop culture and the show Covert Affairs. The character who is super sexy and confident. He is not really blind but the attempt to make a positive character is awesome and rare so props to them for trying. Elsa says she will have to watch it. She is the only blind burlesque performer she knows about. How does she know she’s being attractive? Well, she practices a lot and asks her friends if she looks good in her costumes.

Aud comment about the school shooting story. She wants to know recs for characters where their disability is not the issue.

Elsa recommends Switched at Birth it is sort of ridiculous and has some sort of weird republican thing going on, but they have an entire episode done in ASL where the characters are all teenage girls.

Stevi likes the Michael J Fox show because they address the inspiration porn question head on, in episode one and then they move on and he is just a character who happens to have Parkinson’s and that isn’t what it’s about. The first episode includes some epic crip humor. Then it becomes a normal family sitcom which includes a character with a chronic condition.

Another rec from the audience, the forensic doctor on CSI. He plays guitar, he happens to have one leg, he is awesome.

Back to superheroes with disability. The character Hawkeye lost 80% of his hearing. it became part of his character but then of course then in 2000s he got reset.

Can we stop resetting the disabled characters? OMG.

Fanfic writers cherrypicked that one detail and wrote after the Avengers movies how he had hearing loss. A lot of it was great but there was also a lot of problematic aspects where people wrote it as inspiration porn where he overcomes his hearing loss etc.

Breaking Bad and a character where a disabled actor applied for a character who was written as able bodied and he is a great actor, they just put it into his character, they didn’t reject him from the role, it was just like the color of a person’s hair or whatever.

Cosplay and able bodied people and disabled people What if there is an able bodied people who really likes Oracle and wants to cosplay Oracle. What if there’s a person in the wheelchair who wants to cosplay Supergirl. What then.

Elsa says people in wheelchairs can cosplay whoever they want. But if you are able bodied and want to cosplay Oracle just dont use a wheelchair. If you dont need it please don’t use it. Do not put on cripface. Geordi’s visor is fiction, it is not a real device so it isn’t going to be mixed up with reality. Stevi thinks it is possible to use an assistive device in cosplay in a way that is respectful, but it is tricky. Elsa wants people who are not disabled not to be read as disabled.

(Personally I have some complicated feelings around this and I don’t like the idea that people think they can just play disability. What the hell, isn’t there enough to play with? And, it is even more complicated because of actual discrimination and also I would add in fetishists as an issue. I don’t like the idea that, as with actors, Non disabled people get attention and fame from pretending to be us and perhaps “doing it better”. They get rewarded for performing “disability” in ways that are more acceptable to mainstream culture than the actual lives and being in the world of those of us who are disabled. How can this not fail to be offensive and have the fake cripple come off as perky or happier or reacting in some way that gets props from people who want everything to be okay. My first reaction is that it makes me instantly angry. I let people ride my scooter and manual chair to experience it as fun and not unimaginable. But I hate the idea that people would pretend they are disabled as their costume. )

Elsa talking about her current work writing a game module for ghost hunting blind people, warriors of midgaard, for role playing games. I know how to do and represent this thing. Pay me to do it. Rather than thinking you know it all and faking it.

Orange is the New Black, best humor moment with wheelchair, Scared Straight group goes to the prison and one of the prisoners goes you think you’re really tough . . . She is the most bad ass, I will shank you so hard character.

The panel wraps up. I did not count the attendees but would estimate 30-40 people as I think back on how full the room was.

YAY, great panel!

Bad Inventions: Dumpling Compass!

This is hardly a bad invention. It is sheer genius, because dumplings are fucking delicious. And because I don’t have time to create it, I give it to you. The Dumpling Compass!

Dumpling Compass is a phone app that points you towards the nearest dumpling source.

Consider the miracle of the dumpling. The basic idea is some sort of grain delicately prepared and cooked, often surrounding a tasty filling. There are so many nuances to this amazing food. Behold the Wikipedia entry for the Dumpling, and swoon in awe!

Dumplings!

Using Dumpling Compass, you can filter by the doughy substrate (corn, rice, wheat), the method of cooking (boiled, steamed, fried, served in soup), the type of filling, and the national or ethnic background of the dumpling you most desire to find at any particular moment. Your compass will point you to it.

Someone go ahead and build this. You will make ONE MILLION DOLLARS.

Think how useful. Not like the Sockerchief or the Catula.

p.s. Tamales count!

The Superfest Dissie Awards

I had a great time last night at the Dissie Awards, part of Superfest, a very long running disability community film festival! Lawrence Carter-Long MCed and presented 3 or 4 short clips for each category like Worst Portrayal of a Disabled Person by Non-Disabled Actor and The Worst Disabled Villain. It was nice to see a bunch of local community leaders get on stage to accept the awards — some of the fake acceptance speeches were hilarious! Audio Eyes did an outstanding job of funny, sarcastic description that felt like watching Rifftrax or Mystery Science Theater 3000 rather than a boring documentary narration. Would listen again. It was great.

Dissie acceptance speech

My favorite was definitely the “So Sweet” which was about cute little white girls sweetly helping disabled people so I got to give several hearty rounds of booing to Heidi and Pollyanna (who along with Katy from What Katy Did, take up way too much of my brain with their angel in the house internalized ableism).

The event started off with a cocktail hour which I missed and then Lawrence opened up with a charismatic speech about how we would discern, disrupt, display, and discover as we Dissed.

Lawrence MC-ing

I can’t remember all the nominations but I did tweet most of the award winners for posterity. The Worst Performance of Disability by a Non-disabled Actor Dissie went to the guy playing the blind old man in Young Frankenstein. Prof. Georgiana Kleege accepted the award. In the world of Young Frankenstein, apparently blind people cannot get anyone at all to come over and share their soup. So sad! It was lovely to feel the audience reaction all around me as we cheered and booed how bad all the performances were as they played off stereotypes and made disabled people the butt of humor. It was often a hard call which movie to boo the loudest for as the judges watched and listened to the crowd, because the spectrum of Hollywood badness was so vast!

Shirley Temple in Heidi as she teaches Klara how to walk and then ends up being more important to Klara’s family than she is, won out over Pollyanna. It was a very hard call for me. Was it worse for Heidi to be telling Klara she could walk if she just tried hard enough? Or worse that Pollyanna told her sick neighbor lady, the one disabled person in town, that she wouldn’t die if she wanted enough to live, and then stormed out in a huge ragequit? The deciding factor for me was that it was extra, extra horrible for Klara’s dad not to love her until she could walk! Christina Mills from the California Foundation for Independent Living Centers accepted the award pointedly remarking that ther are great organizations like California Youth Leadership Forum where Klara could hang out instead of being with that poisonous little brat Heidi.

Crowd for the Dissies

Joshua Miele then took the stage to accept the award for Worst Miracle for the actor playing the paralyzed guy in Monkey Shines. I think it was voted up because the movie’s badness outshone the actor’s bad portrayal! Personally I was rooting for Forrest Gump and the moment where his leg braces exploded off his legs as he ran like a world class athlete. But hey, we’re taking this super seriously, can you tell? Josh invited his alterego, or friend, Manny Zannasshole, to give a speech about his sensitive directing and producing of this miracle moment inspired by his knowledge of “the differently crippled, or whatever you people are called these days, people with crippledness” provoking a giant laugh from many of us in the audience.

Most Tragic was a painfully stupid display as we saw Clint Eastwood feel the terrible pain of the actor in Million Dollar Baby asking him to put her down like her family’s old dog because she could never be on TV again. Wow! It had to win for being most actually horrible and harmful to people’s lives. For me it is a matter of people telling me to my face that they think it is better to be dead than like me, that they would kill themselves, etc. But for many of us it is directly a life and death matter that threatens our survival as nurses caretakers or even family members decide to express their mercy or support a person’s suicidal thoughts instead of getting them help or fighting to change their situation and society at large. So Million Dollar Baby just had to win. Victor Pineda took the stage for the award and was super badass and funny as he told Clint Eastwood he might be better off dead than that ignorant and Hilary Swank’s character in the movie could totally have better friends if he would get out of her life. I’m paraphrasing but that was the gist of it.

Dr. Strangelove then beat out Mr. Glass from Unbreakable for Worst Villian. There are SO MANY. Strangelove has to win for popularity and for the thing that most people want to joke about when they want to joke about your wheelchair. But Mr. Glass was more truly the winner for his villainy being based on his internal bitterness over being disabled! Reverend Scott (?) went up on stage to take the award with his one black glove! You would almost think he had expected Dr. Strangelove to win. . . do I smell a fixed contest here?

Accepting the Worst Villain Dissie for Peter Sellers

The Crips Gone Wild category for buffoonish portrayals of disabled people causing havoc (AS WE DO) gave us clips from Other Sister, Radio, and Blind Dating. They were all horrible. Blind Dating with a very extended scene of the guy trying to fake that he wasn’t blind on a date in a restaurant. Comedy gold!??? Aaaaagh! Then the last category was “Hey, Only We Can Laugh At That” for truly bad comedy that is “Satirization without representation”. They were all awful and I have forgotten which one won because by that time it was quite late and I was tired.

My teenage son came with me to the Dissies. He enjoyed it a lot. He laughed his head off and I was happy to share some good political awareness and humor with him. He gets enough of it from me day to day just doing things like riding the bus. How nice that he knows it isn’t just me making my usual sarcastic muttering comments. He will grow up knowing quite a lot and being a good ally for others, as well as having gotten all the awesome wheelchair and scooter rides possible.

I hope this event happens again! Thanks to the Longmore Institute and the SF Lighthouse for sponsoring Superfest! I hope I can come out to more events and meet people — I often feel totally disconnected from whatever Bay Area disability activist communities are out there as I flounce around in my own little world. I have the community feeling and solidarity online but not in person and hope to connect more in the future. Anyway, if this happens next year I will wear a sparkley tuxedo and do it up in real movie award style !!

Taking up too much space

Last night I had the incredibly pleasant experience of realizing I was in a crowd but no one was considering me as “in the way” and I didn’t have to worry about that with the same level of awareness I do in crowds where I am the only or one of few wheelchair users and where people are sadly ignorant of their own bigotry. Instead I was in a crowd where audience and performers were people with disabilities and their friends.

A layer of tension dropped away from me. I would not have to be apologetic, diplomatic, and assertive to the point of defiant all at once just in order to sit and watch the show or move around the room. No one leaped out of my way or yanked their children closer while I was 20 feet away from them. If I was in line, no one acted like I was the one person in line who was just where I should not be. If someone needed to get between me and another person or people in the room, they were just ask likely to say “excuse me” to any of us, politely, rather than picking me out and letting me know I was the one In The Way. I thought to myself: How low my standards have gotten, my expectations for other people’s behavior! How sad! But what a relief at least for this moment, this event!

This particular kind of bad behavior seems to me like it is unconscious but it reflects deep unwillingness to have people with disabilities in public at all or to consider us fully human. We are not considered citizens of the world. When we are in it we are always In the Way. A person with a suitcase might be in someone’s way. But just by being anywhere in a wheelchair people want to decide where I should be and put me there. It’s like, get in the corner!

This happens to me every day in every store, street, bus, or event I go to. It happeend last weekend at my conference and in the airport and in restaurants and bars and everywhere.

OMFG, you damn walkies!! Chill out!! We are all just people co-existing in space! Say “excuse me” if you want to get by, like you do with every other situation! Like I do if I want to get by as well! Don’t be acting like I am too big or too fast or must be specially humble and apologetic before I get to take up space in the world!

Tuesday I was at a conference party sitting around a table on a big, open patio. Behnd me there was a little group of people talking. After about the 10th person shoved into me trying to go between my scooter and the group standing a few feet behind me, some guy said something about how I should move so he could get by. I had had enough. I turned on him like a motherfucking cobra and said, “Why do you not just ask the guy right there, the guy behind me, tell HIM to move? Say excuse me to him since he can step aside easily and I can’t.” About 1 out of 100 times this happens, I explain it to some random stranger who wants to walk through a line or a crowd and point out they can just as well ask a standing-up person to move.

My loved ones and friends are very familiar with watching this play out. I am comforted that they notice how it happens over and over and that they share my reality. Constant social aggressions (I can’t bring myself to call them microagressions) take their toll.

Last weekend at the end to my own work conference one of the conference organizers told me I was in the way because “PEOPLE” needed to get by. She gestureed at the scooter with a sweep of her arm. PEOPLE might need to get by!

My scooter was not in the way. It was parked behind my own chair at a table with plenty of space behind it and not blocking any corridors. She did not seem concerned that ALL OTHER WAYS and all other places to sit were blocked for me, because in her mind, I am not “People” who might need to get by. I am an inconvenient Thing — that unfortunately can speak. I told her I had parked carefully so that no access for anyone else was blocked. The people next to me could get up from their chairs without any trouble. Others could walk past in every direction. But her sense of the rightness of the universe was perturbed, for her, unbearably by my presence.

That sort of thing happened over and over in the course of the weekend. It is why I talk about community education. People need to think through their assumptions and their bigotry. I can’t teach everyone how to behave, on the spot, all around me, every day. Don’t shove into my wheelchair like I don’t exist. Don’t pat me! And don’t fill up a room so I can’t get around, then tell me I can’t be in the one spot I can get to! Don’t lock the elevators and don’t act like I’m a liability waiting to happen! How hard can it be to treat me like a person?!

Last night I was overwhelmed with the feeling of not haveing that feeling. Then as I paused in an alcove of the lobby of the SF Women’s Building to call a cab. An usher for the event, I am fairly sure a volunteer or associate from the building not from the event itself, was standing to the side and in front of me. She told me I was in the way and asked me to move so that people could get by. Amazing! I looked up at her and pointed out, the corridor between the alcove I was in, and the central bit where the elevator was, was enough for at least 3 people to pass, 2 moderately sized wheelchairs, I was not in the way of anyone, and, she was standing more in the middle of the corridor while I was off to the side, so really, she was in the way much more than I was.

I asked her why she felt I was especially in the way more than herself or anyone else. She was unable to answer. I said it was egregious and horrible for her to say this to me and put it onto her to think about for her future. I said it at some length but diplomatically and included the words “I am angry.” I was extra sad because she looked like someone I would in most situations be friends with and want to talk to. Meanwhile people rolled on by us leaving the building and sometimes pausing in the hallway to chat with each other, as people do. No one evidenced impatience or acted like anyone else was in their way.

Well, I must report that I stayed in the spot. I took a picture of people passing by me and then called my son over from where he was sitting with his book, to cross the lobby and take a photo of where I was sitting so that I could write this up and show how very Not in the Way I had been and why this stupid incident made my head explode. I could hardly have been less in the way of anyone at all!! You can go to that exact spot in the Women’s Building and stand or sit there and see for yourself how unobtrusive it is.

Intheway-hallway

The sign in this photo is offset (way closer to the camera) and not in line at all with where I was sitting. It may also not be clear but I am fully in a little alcove, ie, my wheels were inside the curve of the stairwell. In other worse this was my effort to park temporarily in a place where I would not block any traffic or be stumbled over.

It would have been maybe more sensible of me to go wait and text on the other side of the lobby. I get that. But…. I had the feeling of just being a person in some space that many people were using. Many people were standing around. They were not told to move. I could not believe I was considered to be in their way but they were not in mine. My fellow chair and scooter users were just hanging out and were capable of saying excuse me to each other if there was any inconvenience. I *knew* if an able bodied person had been standing there, in the same spot, taking up the same space, the usher would not have perceieved her as an obstacle.

Here is the view from my niche as people went by.

Corridor womensbuilding

I don’t think I swore at the usher and I remained “polite”; it was full on fierce coherence from me as I explained exactly how bigoted her action was. At some point my child and I went to the door to look to see if the cab was there and then we went to stay on the other (totally empty) side of the lobby.

As we waited for our cab at one point I looked up and saw a woman talking on her phone, standing right smack in the middle of the corridor several feet directly in front of where I had been waiting when I was in the way. She stood there a few moments as the usher looked right at her. Finally I rolled up and addressed the usher conspiratorially. “Hey, I just wanted to point out how very In the Way that lady is. You should tell her!” The usher said “UMMMM . . . . DO YOU WANT TO HELP ME MONITOR THE HALLWAY?” Nice move, actually, that made me laugh! It was a pretty decent attempt at defusing, but she had already gone too far and was a little too condescending for me to bear at the moment because she never bothered to apologize. How hard could it be to think it over for a moment and say, “Oh, I guess I did that. Sorry!” Apparently harder than figuring out a strategy for how to co-opt the angry cripple. What the hell is WRONG with people! Hahahah!

I go into a place, I think about where to put my scooter or wheelchair and where I can sit, and whether I am going to need to park it away from me if I sit in another chair, and whether I need help to move things to fit into a space politely, and so on, ALL THE TIME!

But people want to scold me and explain how I need to behave no matter what I do, because disability is disruptive and they feel perturbed and in need of being in control of something they don’t understand. How many bus drivers scold me and tell me the right way i should wait for the bus, signal the bus, get on the bus, be on the bus, communicate with them at all, and get off the bus. Do they think I was born yesterday? They scream at me to tell them where I’m going, they refuse to let me on because there is “no room” though they just let 20 walking people on before me, they scream “WHEELCHAIR GETTING ON!!” 5 times at the whole bus before they extend the ramp for me as if I’m incapable of going the 5 feet onto the bus without ramming every person there without the Enterprise going on Red Alert. They can’t take any of this knowledge on themselves and they’re not scolding other people who might take a moment to fumble for their bus pass but it’s open season on wheelchair users to lecture us like you’re a goddamn social worker. Nuh-uh. Not having it.

I am not an emergency or an obstacle! Get used to it! My public presence will just have to be YOUR mild inconvenience!

This ends my minorly pissed off rant and I will now go write another post about how nice the event was and top-post it on top of this long angry assertion that I and my MONSTER TRUCK MECHA SUITS can exist in public.

Squeezing dragon

My son and I spent some time this morning lying in bed, me with a big cup of coffee, still both in our pajamas, going through the blog archives of Johnson Tsang, a sculptor from Hong Kong. Our minds were blown as we paged through the many stages of construction of “Painful Pot” which is a dragon coiled around and squeezing a porcelain vase; and then “Convergence”, a pair of hands holding a melting gun balanced over a ravaged half melted face of Buddha. Both Milo and I liked Tsang’s politics, of peace and compassion over war and violence, and combining human contact with natural forms with all the ways he worked with faces and splashing liquids.

I love this blog especially for its exposure of process. How did Tsang get from this plain form,

plain-clay-pot

to this incredible complexity?

coiled dragon pot

The holographic thought had to live first, in Tsang’s mind. Through the exposure of his technique step by step, we can follow a little bit of how the reality of that vision came to be. For the vision to be possible the knowledge of what was possible had to live in his hands, the practice of playing with materials and ideas. I love that with material and words, music and art, performances and even just daily life, there is space and we have infinite potential to fill that space. The next five minutes could be a calm silence or there could be a revolutionary speech that fires your soul or a piece of art so beautiful and complicated you cry at the joy of being alive.

Process exposure shows us possible paths for us to take potential into reality and make amazing things. As artists or conscious agents of our own reality we can take that steering wheel, though not every moment can hold that weight. We could fill our lives a little more with those moments or commemorations, reminders, of them in the form of what we make or in public art. Looking at this site with my son, neither of us are sculptors, but I came away with a renewed sense of commitment to my own craft and life. (Or maybe it was just the coffee….)

Thanks for the gorgeous blog, Johnson Tsang!