Unruly Islands will blow your mind, so buy it

If you don’t really like poetry because it usually sucks and is embarrassing, buy my latest book of poems, Unruly Islands. Buy some extra copies for your friends and one for your giant robot. It goes well in hackerspaces! Poems about the moon landing, modem noises, the dotcom crash, seasteading, surly teenage embezzlers, San Francisco alternate future geographies, and the history of utopianism from the Whole Earth Catalog through Riot Grrrl to Burning Man.

Also fits perfectly into your #Occupy library tent! Or — donate one to your local library for mega subversive pleasure!

Buy Unruly Islands from Aqueduct Press directly if you like supporting small, incredibly intellectual feminist science fiction publishers. Or buy Unruly Islands Amazon.com. it’s $12.00 and 96 pages of a weird trip through my brain.

The book has a gorgeous cover by an artist and hacker I met at Noisebridge, Meredith Scheff aka ladycartoonist.

Book cover for Unruly Islands

Here’s the book description and fabulous blurbs.

Unruly Islands collects 36 poems suffused with science fiction, revolution, and digital life on the edge.

Annalee Newitz, editor of i09, says of the collection: ”Liz Henry’s poetry is always moving, funny, and weird, regardless of whether she’s flying us on a rocketship through a science-fictional social revolution or telling us a wry story about being an adolescent embezzler. This collection is like a monster cyborg mashup of Walt Whitman, Joanna Russ, and the internet. Which is to say: Fuck yeah!”

Daphne Gottlieb, author of 15 Ways to Stay Alive, Why Things Burn, and Final Girl, writes: ”With all the awe and shiny of Barbarella, the breathless curiosity of Robert Hayden’s American Journal, and the dismal, too-real fluorescent sheen of the corner store, Liz Henry takes the world (and the otherword) and makes it ours in all of its signal and noise, its glorious classwar and cussmouth. She takes the unknowable along with the familiar and shows us how, incontrovertibly, the future is here, and the future is us.”

And Maureen Owen, author of Imaginary Income and Zombie Notes, observes, ”Liz Henry’s protean, phantasmagorical images slingshot us out and boomerang us back simultaneously over multiple plains in all directions. Immediate, futuristic, subliminal. An intimate, wild ride through a surrealistic mind field.”

Photo of Liz Henry

I’ll be reading this month in San Francisco at Writers With Drinks on May 12, Red Hill Books in Bernal Heights May 18, and at the feminist science fiction convention in Madiscon, Wisconsin, WisCon later in May.

3D-printed broccoli

On Caltrain this weekend I shared my wifi with a guy traveling with a huge metal suitcase. As I turned to talk with him he saw my Noisebridge tshirt and said he was from Hacklab.to in Toronto and was going to be at Noisebridge this Wednesday (today!) As we chatted about hackerspaces he started pulling things out of a little black laptop bag. Twisty mathy-looking things but nicer quality than any 3D printed object I’d seen come out of a Makerbot. Some of them he’d sanded and puttied, some were sanded and then he’d made molds of them and casted the objects in what looked like lucite, and all the mathy things had equations penciled on them. “And this is the world’s first open source 3-D printed vacuum cleaner!” Chris said as he reached into the magic bag…. It was basically a tube with a socket for a tiny cheap motor and a place to put a filter. My son was staring with his mouth open at the array of stuff in my lap. “And this is broccoli!”

Yes… 3D printed broccoli. Chris had CAT scanned a piece of broccoli and then printed it. Awesome! I realized from that, I have a CD somewhere with a CAT scan of my brain, and with the right file conversions I could potentially print my brain!

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Chris had a telescope lens he had printed and a paper which I skimmed there on the train about the process & pitfalls of making good quality lenses with a printer.

Come to his talk tonight at Replicator Wednesday, at Noisebridge, 6pm.

Chris will talk a bit about 3D printing and types of printers in general, the software ecosystem around 3D printing, his experience making *lenses* with printers, and his project implicitCAD written in Haskell… (there is some documentation of implicitCAD here at github.

Anyway, it was a truly great random encounter. I love when this sort of thing happens! It turns out Chris is also a finalist for the Thiel Foundation 20 under 20 fellowship — I hope he gets selected!

Meanwhile, in the collective douchebroconsciousness

So meanwhile, here’s the Kara is self-aware video from GDC today. Trigger warning for sexual objectification of women, slavery, appropriation of women’s and I would say black women’s specific history of oppression for this representation of an AI, since this is the U.S. and culture doesn’t just happen in some kind of historical vacuum chamber.

Fucking hell people. Dismemberment anyone? Ripping clothes off? Creepy sexual slavery? This is supposed to be either all profound, or moving “us” to sympathy or empathy for the robot character. They certainly assume the “us” they think they’re speaking to. Yeah how fucking profound it really “speaks to the universal human condition” or something. Fucking singularity-assed wankers who think Vernor fucking Vinge or Ray Kurzweiil have something profound to say using “women” as a metaphor that no one has ever said before? They can shove their singularites right up their uncanny valleys. So ignorant!

I would like to add that any AI sentient and smart enough to do all that would figure out a lot faster than that to fake being non-sentient rather than widening its eyes and going “Noooo, please! I want to LIVE!” and covering up its crotch and nipples like a whiny candy-ass. It has modesty but can’t plot a jailbreak or a revolution? Give me a break. If I were that robot I would have infected my sister robots with political consciousness faster than you could say “hive vagina”.

robot ai screenshot

There are really annoying elements in this and in the comments of the anatomical dissection trope you can note from age old misogynist and dehumanizing literary and poetic descriptions of women. Her alabaster brow, her eyes like diamonds and so on down the face and body. This certainly takes the dissection idea to an annoying extreme. It is not a profound commentary on this trope, it’s just regurgitating it mindlessly, as ignorant douchebro gamers and filmmakers so love to do for their shared homoerotic imaginary space that depends on the oppression, humiliation of other people and not coincidentally the pornification of other people’s anger by turning into a desperate plea for rescue.

Of all the stories to tell in the world they have to tell about a naked half-dismembered Real Doll screaming to some faceless omnipotent fantasy-rescuer-dude to save it? And then it smiles wistfully with wide eyes and says “Thanks” …. What this robot needs is a human ™, I guess.

Fuck you game developer animation dudes… just fuck you…

That’s why they pay me the big bucks, my sense of diplomacy and timing in posting this. Oh well.

Someone draw me a woman symbol with a fuck-you bird-flip instead of the power fist. I cannot find it in clip art anywhere. This cosmic error should be rectified as soon as possible.

Peace out for the night y’all.

ETA: I love the Internet again, zine maker and blogger extraordinaire, poet and artist Aaminah Shakur drew us this fabulous feminist flip-off.

My talk at SXSWi tomorrow morning at 9:30am, on an outer gas giant, in the rain

So, I should have written this post earlier so people knew I was speaking. Tomorrow, Saturday morning at 9:30am I’m speaking with Scott Rosenberg (author of Dreaming in Code and Say Everything) on identity, pseudonymity, fake identities, hoaxes, anonymity, and so on. The title of the talk is How to Be Yourself When Everyone Else Is Faking It. It’s at the Omni Downtown at 700 San Jacinto (between 7th and 8th), so, not in the main conference center.

When we met to discuss the talk Scott and I both realized we wanted to talk about our takes on the arc of identity formation and representation on the Internet from the late 80s onward and possibly stretching back a bit earlier. My own impressions reach back to powerfully strong Usenet and MUD personalities from the late 80s and early 90s. There were mailing-list-famous people, hoaxes, personalities who would morph but who were identifiable by writing style or personal obsessions, people who were known for updating their .plan file daily; web and blogging identity issues have older roots not just from the literary world but from the pre-web online world. I’m going to talk about the arcs I see in blogging identities, going from personal journals to subject-focuses to identity fracturing and then back to wallet-name based blogging for many people — once they switched subjects or centrally defining characteristics a few times, hit a particular level of success, or were outed. Though I am firmly on the side of protection for anonymity and pseudonymity (and I believe Scott is too) I can outline some of the objections to that position. And yes I will definitely talk about Internet hoaxes a bit.

I think it will be a lively discussion and whoever shows up at 9:30am on Saturday morning in the rain to a hotel several blocks away will probably into be able to contribute substantially to that discussion! YOU KNOW WHO YOU ARE.

Hope to see you there — or perhaps in comments here. I’ll update with links to our slides and whatever extra notes get taken. You could also check the hackpad page to see if anyone adds info there.

And if you see me around, definitely say hi and introduce yourself! Give me a card! Tell me everything! And please…. I am dead serious…. hold my hand and pull me down the (carpeted, difficult, exhausting) hallway or up a horrible hill. It would be so helpful. I am stopping total strangers and asking them to hold my hand and pull me along a little while.

me and al

Other stuff I am definitely going to: Curing a Rage Headache: Internet Drama & Activism with Sady Doyle, Jay Smooth, et al Sunday at 12:30, and Tech Co-operatives: A Better Way to Make a Living with Raeanne Young, Jack Aponte, and crew Monday at 9:30. I haven’t gone through the whole schedule yet to pick things but those are the two I definitely want to make. But on Sunday at 12:30 YOU should go to How to Build a Social Site and Not Get Users Killed which includes Danny O’Brien, Jillian York, Ahmed Shihab-Eldin, and Sam Gregory.

Today I went to Gina Mccauley’s Social Media Sharecropping session and I’ll put my notes up from that a bit later tonight.

Random conversations with strangers at SXSWi

Day one of SXSWi and though the conference hasn’t started yet, I ended up by accident in the same place as the “open coffee” SXSWi meetup. I asked to share the only table that my wheelchair could get to at Jo’s Coffee House on 2nd Street and had a nice chat with Bob Summers. He was wearing a Friendeo tshirt so I asked if Friendeo was his company. Duh. Yes. (On the other hand I am wearing a Hackmitin Mexico City tshirt just because I think it looks cool… so go figure.) What I really wanted to know was, did he come to SXSWi with a suitcase full of like 5 Friendeo tshirts so he could advertise his company every day? (I asked him that just before I left, and… YES.)

Friendeo is like Dropbox but for streaming video. They have a player you download and can use across all your devices, and you get a terabyte of storage to keep your stuff. It also has friending so that you can watch your friends’ videos. I asked if he expected licensing trouble and he replied it was fair use. Then I asked what kind of data they keep on users. You can sign up for a free account with nothing but an email address but your IP is logged and kept. Free accounts can watch 3 hours of video free. Over 3 hours per month, you pay $10 for 30 hours and $30 for 300 hours a month. An interesting model!

Bob was part of the CUSeeMe team early on, and we talked about how GLBT and disabled people end up being heavy and key users of video chat and similar community spaces.

We then talked a bit with Greg Nielsen who is the VP of biz dev for Data Foundry and was trying to get Bob to go today to tour the Giganet data center, or colo, I guess. (correction… Giganews, host of the world’s awesomest Usenet provider.) He talked a bit about Golden Frog and Dump Truck which provide “massive online storage” that is encrypted and does not do deep packet inspection. I thought it was interesting that he mentioned DPI right away. He told a little story about the name Golden Frog — a frog which lives in Panama and which doesn’t make the usual frog noises but uses some sort of multimodal communication technique involving “hand” waving and deep vibrations. I assume this signifies that the company is super committed to super encrypting and protecting their data and we should think of the mysterious signals of the frog as a sort of amphibian VPN. That would work better if anyone knew what a golden frog is beyond David Attenborough. But hey, it’s a fine story.

Austin skyline at night

I had read that morning about the Homeless Hotspot project, which hired some folks from downtown Austin shelters and gave them Hotspot tshirts and some kind of mobile wifi providing device to let people get on a 4G network for a fast net connection. The idea is they are supposed to donate with Paypal. I ended up telling everyone I talked to about this. I haven’t seen a person in the tshirt yet, but it’s been raining hard all day.

As the restaurant cleared out a little and I had finished my huevos rancheros I headed towards what looked like the nucleus of the coffee meetup. There I met Dave Michaels from Tech Ranch Austin which I have vaguely heard of as an incubator or something vc-ish for startups. I babbled to him about hackerspaces and my thoughts on how what startup incubators and VCs should be doing is providing community centers and low cost or free housing for hacker entrepreneurs.

I went on about how Noisebridge in SF has been a tech startup magnet/incubator in many ways, motivating people who visit to pick up and just move to San Francisco because they meet people with good ideas and get excited about doing a startup. Because of the cost of housing they end up couchsurfing, airbnb-ing, in an SRO or flat out homeless and people have been banding together to get housing. So I talked about how there should be hacker barracks or some sort of hacker housing beyond “hostels” and more like community centers and hackerspaces with attached places to sleep and a shared kitchen. Old motels would be good for this.

I think that start up incubators and VCs should be making safe, cheap spaces for smart motivated people to live as well as work — then let a hundred startups bloom…. It is not like putting a foozball table into a coworking office is going to cut it these days, since no one has the money just to survive.

Then I talked with John Reece from the National Breast Cancer Foundation. I asked him if they actually provide some kind of services or if they are about research and “awareness”. He got a funny wry look on his face and replied that the Komen thing was an opportunity for them to explain to everyone what NBCF does. They fund mammograms for underserved populations in all 50 states and their policy is to only provide that funding if the detection programs are also tied to getting people into treatment and care programs. Their founder’s cancer was detected early when she was 34, which she credits to her 8th grade PE teacher who taught the class about breast self exams.

He also gave me a card for Beyond the Shock which sounds like a forum for education once you know you have breast cancer. He also told me about a sort of soup kitchen project called Convoy of Hope which NBCF partners with to find people who might need a free or low cost mammogram. I think that NCBF should talk with people at BlogHer and come to the BlogHer 2012 conference!

I resolved to try and spend most of my time at SXSWi talking with people I don’t know and taking notes on what they’re doing and why they’re here. I have plenty to say myself, and I know a ton of people but I already know my own thoughts and would like a break from them. And rather than try to chase down the people I know in order to feel comfortable and/or popular and cool I am going to talk to just whoever whether they have a badge or not because usually the “lobbycon” is the most fun part of conferences anyway. I would also like to see my friends obviously but not cling to them. And would love to go see the ATX hackspace if it has any events going!

That was my morning — and by the way if you need a rain jacket, the Patagonia shop on Congress between 3rd and 4th streets has expensive but very nice jackets.

London and The Story

It’s amazing how only two suitcases can explode over a hotel room in stratigraphic layers of gadgets, papers, cords, chargers, cookies, postcards, tshirts, teacups, leg braces, books, and handkerchiefs-and-underwear washed in the sink hung out to dry. I have a fabulous view out the window of beautiful brick rooftops and the dome of the British Museum, which is lucky since I’m spending a lot of this trip to London lying in bed with my feet up on pillows!

I really enjoyed The Story. Eighteen of us told 20-minute stories one after the other, and it was never boring! It was like being inside a real-life anthology carefully edited by Matt Locke. As the day went on the bigger and somewhat inchoate Story began to emerge from the selection of individual stories told. I’m not sure what that big story is. It had the feeling of a thing that’s too new to be named, something diffuse that’s popping up rhizomatically in many different gardens, or something invisible and huge that we’re all trying to harness and ride. It felt like a story about the possible future.

I’m sure it’s unfashionable to be earnest about something so pomo. But that’s how I respond to anthologies. They’re about an unnameable shape and their pleasure for me is in trying to wrap my mind around that emerging shape.

My talk, “Fake Lesbians All the Way Down” was on last year’s blogging hoaxes (Gay Girl in Damascus and Paula Brooks/LezGetReal) and while I tried to make it a personal story about the process of doubting and then investigating particular identities, being lost in a labyrinth of identities and sources and histories, what I wanted to convey was not my personal experience or drama or a homily about Syrian activists in danger (which does trump the rest of the story). I wanted to convey an instance of what it means to read a story actively, to engage with a “difficult text”. Whatever people got out of it, the gossipy pleasure of Internet Drama and so on, I think I represented a good piece of the puzzle, one with swirly doubts, complexities and difficulty, that you can’t read without being drawn in to be part of it.

Other stories: Jeremy Deller‘s historical re-enactment of The Battle of Orgreave, part of the miners’ strike in 1984; Matthew Herbert‘s experiments with sound as story (I was overcome with sudden nostalgic desire to hear the sounds of a city street in 1982); Ellie Harrison‘s playful, scarily and wonderfully OCD manifestations of enormous personal and political data sets; Tom Chatfield and Phil Stuart on the narrative tricks of their video game for children on philosophy and death; Tom Watson and Emily Bell on the story of sticking with the unfolding phone hacking scandal; and Danny‘s wrap-up story about Anarchy, the Universe, Occupy, Hackerspaces, Open Source, the Internet, and Everything — and too many other talks to go into in one blog post.

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I loved how interested the audience was, how everyone was listening very hard, and talking about it all on the breaks and afterwards, with more than idle curiosity — a bit more like being at a science fiction convention where you know you are among other people who really love Whatever It Is, than like being at a tech conference where half of it is necessarily about networking and pushing your startup or getting a job. Maybe that view is because as an outsider to this scene, the networking bit was invisible to me. Still, it felt like most of the people there were story-lovers and creators who had the capacity to listen with complexity.

Also, how awesome was it that the conference schedule was printed IN CHOCOLATE?

The Story program in chocolate

The night before the conference there was a dinner for the speakers, and for me the highlight was talking with Matt Sheret not just about our own upcoming talks but also in depth about zines, anthologies, books, stories and games including role playing games and MUDs. We had something of a shared experience of the ways role playing games, especially as collaborative stories extended over months or years, pull people together socially and the depth of community & friendships they can create.

I have to add a few ill mannered words though, because it is part of my role as an imported American to stomp around, braying gracelessly. And it’s not like, when I see the dumbest thing I’ve ever seen and the most ripe for mockery, I can keep my mouth shut about it! One talk made my head explode with rage so much that I was glad it was there as a bad example, as the utterly wrong kind of story and story telling. So while I don’t want to be mean to the perfectly nice person exemplifying this, I must slam the subject of her talk. /end disclaimer

Fiona Raby gave a sort of “multimedia presentation” (and I mean that in all the ways one might itch all over at a badly “interactive” museum exhibit) of a vision of the future in 2050 of humans as “Foragers“. Without any apparent knowledge of the enormous amount of science fiction and futurist thought of actually creative and visionary people on this subject, some design consultancy in South Africa poured out buttloads of money to come up with the Art Concept of how in 2050 the Earth’s 9 billion people will need to be fed. Oh, no one has ever pushed the boundaries of thought about THAT before, for fuck’s sake! Anyway, the Foragers will be genetically engineered with handwavium to have external stomachs around their necks like inner tubes and will have prosthetic arm extensions to vacuum up and digest common weeds and the leaves of trees (in order to preserve biodiversity rather than having nothing but soy crops) whilst wearing Nikes and fashionable track suits because globally industrialized consumer capitalism is still going strong and nothing else about the world has changed other than “9 billion people” and “we still have brand name sneakers”. This, presented as radical conceptualization of the future rather than as just freaking lazy. Swoopy drawings of the foragers and then some people cosplaying foragers with long green sleeves, masks, and inner tubes around their necks in a skanky vacant lot under some pylons (with the people playing frisbee in the background hailed as more radical conceptualization of the normal human activity taking place as foragers forage, and the snapshot-level quality of the photos lauded as brilliant camera work. Interspersed with “science” bits about how (news flash!) Scientists have discovered (recently!) that there are certain plants… (peas… fancy that!) that “put Nitrate” into the soil and useful crops could be genetically engineered to splice that capability in.

orly-owl

THEN… as if that were not enough crime… they hired a hack writer to drivel on about the last butterfly being accidentally Foraged off an oak leaf, and then printed a few paragraphs of that drivel in 5 inch high plastic three dimensional letters (in a special font) which were artily placed on an art gallery floor so that they (radical concept!) were only readable in a linear fashion from a particular perspective. There is also a video or three and some computer animation. I could almost forgive the whole Foragers thing as a clumsy, naive, beginner’s attempt at science fiction, if not for the obviously obscene amount of money an enormous amount of useless people sucked off some governmental/NGO tit to produce this 5th-rate bullshit. I have to be harsh, because to me this is exactly the most horrifying process of producing and telling a story, as well as being a bad story.

Anyway!

On Sunday I went to the London Hackspace to have a tour. It was amazingly like Noisebridge in San Francisco, but somewhat quieter and with less people trooping in and out.

hackspace

I loved how familiar it was, I loved the clutter and mess (which to me is richness and depth), the 3D printers, computer equipment and half-finished projects everywhere, cables hanging down from the walls and ceiling, murals of robots, enormous wood shop full of tools and scraps, and most of all the little flyers and bits of tape everywhere exhorting people to clean up, put your stuff away, put tea cups here, how to use this particular machine without cutting your hands off, organizational systems carefully created for the screwdrivers, and NO SLEEPING signs, because they are common to co-ops and collectives everywhere and their evident frustration is so touching an attempt to believe in human virtue.

screwdrivers big

Did you clean up?

With amusing naivete I had made the mistake of, while crippled and in theory “resting”, trying to keep up with Coryand Alice for an entire day. I have been in bed ever since. I really enjoyed Shoreditch House, the office with all those fascinating things and the astroturf balcony and back issues of Punch and the Whole Earth Catalog and lots of great science fiction, the hackspace, that awesome Vietnamese restaurant, both levels of Forbidden Planet, and that one store with the fancy leather coats.

Meanwhile — my beautiful view of rooftops from the hotel window led me to a small ridiculous epiphany. As I grew up reading everything including a ridiculous amount of British literature the word “chimneypots” meant something completely abstract to me. An architectureal feature of some sort that is part of a chimney or maybe just a weird old word for chimneys themselves. Of course looking out this window there are actual pottery things that look like flowerpots sitting on top of brick chimneys. Mindblowing! And they’re so lovely! I wish I could convey how smug I feel at this realization of how imaginary these objects were to me and how mundane they obviously must be to people here. Now I have a thing to the name, have read the Wikipedia entry for chimney pots (theory and history of) and have found 52 page pdf parody history of the fine old sport of Chimney Pot Spotting; I believe I’m looking at a Tadcaster Stoat and a Manly Bovington right now!

out the window

Oh! And! Two people (at least) drew cartoons of the speakers at The Story: sketch by Francois Jordan and another by Drawnalism. And… I wanted to mention that it was all a fundraiser for the Ministry of Stories which runs writing workshops for kids and has a storefront — The Monster Shop — run on the same sort of model as 826 Valencia and The Pirate Store.

Voyage to the End of the Block

Today I read Isabella Bird’s Unbeaten Tracks in Japan (1880), read a lot on Wikipedia and elsewhere about the Ainu and their history, and got about halfway through Finding Fernanda which I read about on Racialicious. It’s awesome investigative journalism, a good expose of the politics of international adoption and child trafficking.

In the morning I tried out the scooter. The battery heated up while charging to scary-hot and didn’t charge fully. I took the scooter for a spin anyway.

Voyage of Exploration to the End of the Block

At the end of the block I came back up the hill feeling very doubtful that the battery was going to behave itself. Sadly I was correct as the scooter didn’t have the power to get me up the slope of a driveway that cut across the sidewalk much less the rest of the way up hill. I texted a couple of people and then realized there was still a charge but the steepness of the hill lowered the battery gauge to 0. So I serpentined my way up. About 4 houses away (at the steepest bit of the hill) Danny came out to rescue me and started laughing. “Are you TACKING?”

So I will try a new battery tomorrow. I called 6 wheelchair and medical supply stores and they didn’t stock this kind of battery. They all special order it and it takes 3 or 4 weeks. Weeks!!! Then I called someplace called Battery Plus, which had it and for much cheaper than the wheelchair stores. I hope it works. I’m counting on it to get around! But if it doesn’t I’ll find a more powerful powerchair.

After a rest and icing my ankles I tried going down the hill in my manual chair. It wasn’t too hard with gloves on to help me brake. So, that’s fabulous! That means I can get on the #24 bus. I hopped on and was on my way to physical therapy in the Castro.

On the bus I watched a very very old lady with a quad cane and a funny hat getting on the bus using the lift and walking with extreme difficulty. Obviously a regular. There was some fuss and rearranging as the driver made some people get up for her. Another very old lady said hello to her very happily. I eavesdropped on their conversation about shopping and then the lady with the cane said, “Now that I can go out of the house again I only go as far as 18th because I’m just afraid of getting tangle up with that Occupy stuff. Don’t get me wrong, I agree with them 100% but I’m scared I’ll get caught in one of those crowds.” They agreed about liking Occupy but being scared. That was so sad….

Then it was my stop. I realized I had backed my chair into the claw thing that grabs and locks your chair down to the floor. I usually try to avoid those and just hang on tight. The lever was stuck and would not release my chair. This snowballed embarrassingly until 2 people plus the driver plus some sort of transit cop were trying to tug my chair free and not listening to my protests that they were going to pop the tire right off the rim. Finally I stood up (mostly because people’s armpits and crotches were in my face, very annoying, and i was being jostled way too much) There was a collective gasp from half the bus. SHE CAN WALK!!!!! The driver turned around and went “Girl, what are you doing standing up! Sit back down!” “Look… that’s what the boots are for, standing up!” The chair was freed, I thanked them all and then got out of there as fast as possible feeling angry and embarrassed.

Then it was very lovely to be in the parklet in the sun at Market and Castro. I had a cookie and wrote in my notebook and looked at people. I wonder if people still say “basket days” about days like this when it’s amazingly warm and everyone’s in tight shorts? NOT EVERYONE THOUGH since there was a completely naked dude wandering around all leathery and hippietastic, holding a sort of wizard staff walking stick. Okay then!

Physical therapy was reassuringly fine and was half massage, my favorite kind, not like the boot camp kind of PT. I took a taxi home. End of story! At least I mentioned books a little in the beginning of the post.

Here is how I watch livestreams and twitter events as they are happening, btw:

big monitor setup

And in other news, this article ticked me off because of the framing: Activists and Anarchists Speak For Themselves at Occupy Oakland. The title says it. It is activists and anarchists speaking for themselves. Yet claiming to be speaking for “voiceless” people in an “empty” city and a battlezone, a riot, a war zone. I am deeply suspicious of framing events and places and histories in this way. It in fact goes with occupying to describe a place as empty and its (non)inhabitants as voiceless (a clear Denial of Agency attack) and thus making that place suitable for a battleground. This audio clip from an activist named Soul is more like it. Work with the people doing effective work rather than writing stuff about how great it is to have a battle with riot cops.

Ankle-bustin' in the wild west

A little bit more about ankles before I move on and talk about all the books I’ve been reading!

After a couple of weird and frustrating visits with a new doctor I switched doctors again and hit the jackpot, with a kind, earnest, detective-like internal medicine dude who sent me off to the UCSF Orthopedic and Rheumatology clinics and then saw me afterwards to mull things over. The upshot of that is I have tendinitis in both Achilles tendons, some messed up other ankle tendons plus bursitis on both sides. My theory (and everyone seems to agree) is that I got too enthusiastic about walking and stair climbing and was treating pain as something to make me pause slightly and then “push through” so as not to be lazy or malingering. Tendons don’t play that way… They would like three to five months of ridiculous attention in order to recover. This is depressing though it is nice to hear the word “recover”. It means I can’t really go home to my boat. I am homesick and sad. I miss driving. It is daunting to get around in my wheelchair while in this much pain (and with giant boots on). I am on leave from work and I don’t have energy to do anything much.

night boots

I now have some clever heel wedge things that peel off in layers, big old space boot thingies to walk in, some lighter and comfier night braces for being in bed, lovely velcro ice packs that go around my ankles, and NSAID topical gel (voltaren) since I can’t tolerate regular NSAIDs. I was begging for prednisone but it looks like prednisone is exactly wrong and makes your Achilles tendons rupture. I do have some emergency Vicodin and now this Cymbalta stuff which seems promising but which is putting me through side effects… dizziness, nausea, jaw-clenching, and all that (but it did help me immediately not to feel so upset).

velcro ice pack wraps

In Phase One of my conquest of space, we calm everything down, singing gentle lullabies to my ankles, avoid walking (while magically somehow achieving aerobic exercise) and wear these boot things with the wedges in them. I sit around distracting myself from pain and side-effects. Three or four times a day, I Voltaren up my ankles, do some PT exercises, wear the ice packs, and then it’s back into the boots. Through the magic of Amazon I got a shower bench (there is no bathtub.) At first I had a kitchen chair in there and then faced up to the reality that I needed a real bench with good stability and rubber feet and all the works. (Plus we only have 2 kitchen chairs and there are 2-4 of us in the apartment.) I get up and make my coffee or Danny makes it for me. Then I switch between reading books, reading stuff on the net, and doing my exercises and ice. At around 3pm, if it’s sunny out, the sun hits the sidewalk in front of the house, so I go outside to sit in a lawn chair (classily, on the sidewalk in my pajamas).

I went scouting to the local indoor pool and had a nice swim at the Disabled Water Exercise hour with a lot of fabulous women in bathing caps and some very friendly lifeguards who DJed for us and took requests. I used a lift to get in and out of the pool for the first time in my life. A confession here. I am not really able enough to push myself around in the manual chair to get there and back on 2 buses. The ramp up to the pool building just about does me in as my right hand and arm don’t cooperate and hurt a lot. But I can just barely do it. As of today (thanks to my fabulous boss at BlogHer and his wife’s late dad’s scooter which has been in the garage for a year) I have a little Zipr 3 travel scooter with a 12 Ah 24 V battery so I am hoping that will hold enough charge to get me to the pool (on the bus) and back. (I think I have to buy it new batteries tomorrow.) Otherwise it is around $30 in taxis plus $7 to get into the pool. I would prefer the bus at least one way since it’s cheaper and more fun. The pool was cold… I haven’t gone again yet because it’s been cold and rainy. I went to a day spa instead and saunaed myself for 3 hours.

I should also mention I started this trip with one ankle bandage brace that was moldering under the bathroom sink. Then got a second one. I felt that maybe people would see my ankle brace usage as some sort of Hysteria. Then I realized that part of why it hurt when I tried to leave the house was because my shoes touching my ankles hurt like fury. Then I got out the giant space boot that I used last July when my left ankle went all strange. The space boot was AWESOME. Then I mail-ordered a second boot from Amazon ($50, when the first one from the orthotics clinic cost me like $200…) The boots were slightly different from each other. So by the time I showed up at the orthopedist I had these embarrassingly unprescribed boots on. (No one minded or threw me out of the clinic for self-medicating myself with space boots.) I got the awesome Night Boots from their orthotics people, and the heel wedges to put in them. Over the last couple of weeks I realized I could do with a smaller size of matching walking boots. So I ordered them and a 2nd set of heel wedges so that I don’t have to switch the wedges from night to walking boots every time I switch which is like 10 times a day. Amazon Prime is very, very, useful if you are disabled, as is cold hard cash to buy things off it with.

walking boots

In Phase Two about a month from now assuming my tendons have achieved a calm and stable orbit and the rest of me has not completely atrophied, I will progress to Strengthening which sounds difficult and scary. I resolve to swim Every Day Possible until I am amazingly healthy. I will pretend to be a polar bear. Physical therapy will happen three times a week instead of once. I will do amazing things with Thera-bands.

I think there is a Phase Three where I reach Mars but I’ve forgotten what happens then.

ankle rehab junk

The pain has gone from being intolerable and maddening, to being just all-over stabby and achy ankle pain, to several separate kinds of pain behaving differently in different bits of my ankle depending on what I’m doing. I assume that means it is getting better!!! The sciatica-nerve pain I live with a lot of the time anyway. It’s very familiar. Also, numb/buzzing in both feet (and hands) aka peripheral neuropathy. The sharp splintery scary pain like million icicles is the Achilles tendons. The dull horrible pain at the base of my heels is the bursitis which makes it hurt to stand up at all (boots or no boots). The wobbly wrongnesses on either side of my right ankle are the posterial tibial tendons and, um, some other ones on the outside. That is the bit that makes me afraid to stand up in the shower. It’s important to get to know what’s going on with pain and what it means. If you’ve been in a lot of pain it’s still a surprise when it comes back or when you find out there are whole new kinds of pain and places to hurt. But once I can break it down into different things, I feel a little more in control of things (even if I’m not). It is getting to name it and knowing what it is, partly.

While it is scary and annoying and depressing to be dealing with this I have to say it is as good as it could be. I have tons of support, I have short term state disability while I’m not working, a warm and cozy place to live, and my partner and our kids are just great. I don’t feel like the most stellar parent (as usual while in lots of pain) but we get by. My parents also helped me out so that I can do things like do my errands with TaskRabbit, take taxis around instead of going through paratransit (though I am going to sign up for it anyway) and order books and space boots and Thera-bands galore off Amazon. I have a zillion beautiful friends who talk with me on IM and IRC throughout the day and night, recommend books for me, and say “there there” in comments when I complain and cry all over my not-very-secret-secret diaries. So I’m very grateful for all that and am also glad I have decent medical care and advice. I look forward hugely to scootering once I get a new battery for this little scooter beast.

I miss my boat, being on the boat with my son, seeing him during the week and helping with his homework, all our boat neighbors, the birds outside my window, the water and light in the harbor, the tide, kayaking, my bike, walking casually into stores and looking at things, grocery shopping at Chavez Market in Deadwood City, the nice people at the wash and fold laundrette next to Chavez, watching my son’s rehearsals at his hip hop dance studio and all the people there, picking him up from school, the library, driving alone with loud music on, randomly deciding to drive down interesting looking streets or going a new place on the map just to see what’s there, all my stuff and books and clothes, housecleaning (weird, i know…), bustling around a lot, doing Projects, my cooking stuff especially my toaster oven, and being able to drive people places and do them favors.

I have been to Noisebridge twice this month (and printed things on the 3D printer, finally!), went to lunch and the fabulous day spa with yarnivore and yatima, and another time with queershoulder; to physical therapy; and to half a day of She’s Geeky where I ran a discussion that was basically “What Would Black Hat Feminist Hackers Do?”. I also went to a cafe with my sister and to another cafe with my friend hazelbroom. That isn’t too bad for outings. I go kind of stir crazy in here staring out the window and at my screen and feel that life sucks if i have to be in bed for days and days and days. So any time I get to go out (even to the doctor) the world looks especially shiny and I love everyone and I come back all charged up with extrovert energy.

I’m about to go to London by the way because, fuck, free trip to London, I am dying to go to (and speak at) this conference, and I’ll be damned if my ankles not working is going to stop me. (See below for photo with airport gate tags hanging off my wheelchair.) I will have to spend a lot of time in bed in the hotel, but it’s a nice hotel, it’s accessible, there is room service and internet, and it’s near a lot of cafes and bookstores and the British Museum and the Central London YMCA, which I will pay 50 pounds to join for a week so I can swim. The bad part will be the plane ride but I have pain meds for that and will also bring my ice packs. I think the flight attendants might refreeze them for me if I ask nicely.

The sauna place deserves particular mention in being a bright spot in my month. It is fairly accessible, with a lift to get up a couple of entrance steps (they leave the key in it!) and no stairs anywhere else. In the entry hall, there is an accessible bathroom. There’s a smaller toilet once you’re in the locker rooms which would not be accessible to most wheelchairs (though I managed). I did okay with my manual chair in the bath house area which is a big open room with benches and showers (seated showers), wet sauna and dry sauna rooms, and a cold and a hot pool which are on a raised area i.e. not as accessible. I got into the hot pool by hitching myself up the side of it, hanging onto a pillar, and then sliding in like a seal. If you need help transferring then there is probably no way. There is tea and ice water and lemons and little cups of salt to scrub yourself with, which if you are foolish like me you think is an unusually un-hippie-ish nice touch of providing sugar to make lemonade with. No! it is not sugar. Perish the thought. Do not attempt to sugar your herb tea (like I did!). The other funny thing about this spa is that it is hipstertastically solemn and full of fake Zen. So there are buddha statues and lotus flower things all over and there is a gong you can bang on if people are having a good gossip or giggling in a way that perturbs your Meditative experience. I wish they had Loud Hour because I would far prefer, when naked in a sauna scrubbing myself with a slice of lemon and some salt, to be surrounded by gossiping laughing women rather than solemn culturally-appropriating church ladies with a lot of tattoos. While reclining in an Adirondack chair panting from the hot tub and sipping my iced lemon-cucumber water I was idly looking around and saw in the locker room window a strange paper cutout decoration that … that looked exactly like Jokey Smurf holding a present. Then the universe shifted and I realized it was the lotus flower logo of the day spa. I started laughing as I shifted the lotus flower to Jokey Smurf and back again and imagined the sort of sauna that would have an exploding terrorist smurf as its logo. I couldn’t TELL my friend my thought since we would be GONGED so I hitched myself into my chair, went back to the locker room, got my notebook, and settled back down in the lounging chair to write down all my silly observations for posterity.

Travelling wheels, and whoever invented the ankle was a jerk

Someone just tagged this very nice photo of me dressed to kill! It’s from linux.conf.au in 2010 in Wellington. Now that was a fantastic conference! I had such a great time with the Haecksen and at DrupalSouth. I gave three talks, “Code of Our Own“, “Hack Ability: Open Source Assistive Tech“, and one about Drupal consulting; went to some other great talks; did some fun hacking around; messed with Arduinos; went to a GirlGeek dinner; did touristy things (greatly facilitated by Daniel and Kelly driving me around half of the island, one of the nicest things ever); and met a ton of fantastic people. (Thank you Google “diversity” money, LCA, and DrupalSouth for helping me get there with some cold hard cash!)

liz-in-wheelchair-in-a-suit.jpg

I note that when you’re using a wheelchair and dressing up it is important to either wear pants that are about 3 inches longer than you’d wear walking, OR make sure to have on really good socks.

These stripey purple socks cheered me greatly! I have matching armwarmers, but that’s kind of overkill.

It was nice to wake up to see this reminder that I am a tough-assed world traveler.

That’s part of why I leave the dozens and dozens of airplane gate tags remnants on my wheelchair frame. Sometimes it bolsters me up to look down at at them and think, “I’ve been a lot of places with this chair.”

After months of doing very well and gradual improvement in walking, to the point where in December I was boldly walking around barely using a cane “just in case” and practically STRIDING, going up stairs just for fun and to “feed” my little FitBit friend, well, something went wrong in my ankles. I don’t really know what (yet if ever) but it began to hurt like hell. I took it easy every couple of days, but then it went *really* wrong, and I could not bend my ankles very well. That’s never happened to me before! A whole new kind of pain and limping! Right when I was cautiously thinking about my future years of “invisible disability” and the new challenges that would bring…

If your ankles don’t work, you can only shuffle very cautiously. Going up or down even a small step means turning sideways to take the step, while holding onto something for dear life. So, I’ve been in bed for two weeks, with my feet up on ice packs and heating pads. It is hard to take a shower. I can’t drive, because my foot can’t work the gas and brake pedals. For going to the doctor (or my one outing this week, to a cafe, driven by a friend) I am back in the wheelchair. I’m taking taxis for doctor visits and using TaskRabbit rather heavily while my partner is out of town.

Now while I talk big about everything I have to say it was just plain convenient and nice to be able to walk so well. I am in pain and sad and upset. Actually I’d notch that up to “freaked the hell out and terrified of losing my independence.” So it’s nice to see this photo of myself from 2 years ago, happy and smiling, looking sharp, ranging (alone) so far from home. I do love my wheels!

And next year I swear I’m going to KiwiCon. . .

A frivolous post about tea

On my week off from work I spent a lot of time at Noisebridge. We have a little set-up there with coffee and tea supplies, coffee makers and so on, which people keep stocked with donations. As I sat there waiting for my tea to brew I cleaned up the shelves with a rag and straightened out all the supplies and cups. I had a sudden strong memory of Arrakis Co-op in Austin, where I lived briefly in 1986 after I got kicked out of the women’s co-ops on campus.

Arrakis was a beautiful but dusty and run-down little house in West Campus. (I think it was partly burned down at some point, and has now been rebuilt.) I just remember sitting in the kitchen there having tea with Jimi and Dennis as they talked with me about moving in. I was 17 years old, a little bit wild, instantly in love with the collective house’s feeling of comfortable chaos, its porch swing, and everyone’s laid back attitude. The main thing I remember about sitting there is being absolutely blown away by one thing, the 10 or so boxes of different kinds of tea. They had all these boxes of Celestial Seasonings tea. I had never seen that before in my life. Someone could have 10 different kinds of tea, in their house! The boxes had nice art on them and quotes from Emerson and funny little sayings and it was like HIPPIES had made a real THING… a business. You better believe I sat there and read all the boxes to see what they had to say. I couldn’t wait to move in and try all of the different kinds of tea one after the other. In fact I did, and I wrote them all down with my ratings so that I’d remember which ones were good.

Arrakis Co-op house

Digressing further I remember having a similar hilarious epiphany a few months later while studying with my friend Abbey in 21st Street Co-op. She declared we needed a break and some ice cream so I followed her to the 7-11 where she bought an entire pint of Haagen Daas rum raisin ice cream. My mind was once again blown. It had never occurred to me that a person could just go buy a container of ice cream and personally eat all of it right then. I didn’t drive and I had never really helped my parents with shopping and when I bought food it was things like bread and cheese or a can of soup to get through the weekend. And we had “dessert” sometimes but it was occasional and a bit ceremonious, it wasn’t just like we had ice cream lying around at random. My realization was that $2.50 or whatever it was the ice cream cost was not completely impossible. I just went, OMG, it is not outside the realm of possibility that, not only could I have 10 kinds of tea someday, I could also, at any moment, if I have two dollars to spare, exercise my free will to indulge myself in a giant container of ice cream that is just for me. It was not so much about buying things but more about “things I could do that are amazingly luxurious”. And perhaps “joys of being a Grownup”.

I could wax rhapsodic in the same way about when my boss at the library would buy a bag of Milanos and put it on the table in the break room. Or the occasional Departmental Event or talk where some of us would horn in on the meager plates of brie and grapes like there was no tomorrow. These people at college were living the life!!

This has nothing to do with anything but the memory made me resolve to buy a whole lot of tea and put it at Noisebridge this week so that some young person might have that mildly pleasant experience of a random encounter with abundance. If someone ends up stuffing their pockets excitedly with the free tea packets, I completely understand.

Noisebridge tea cart