Enjoying all the paths

Took a bus and BART to my sister’s in Oakland last night, then went to a party, then BART home before midnight. Once again I was struck by how easy it was for me, when it was clear it would be 20 minutes before the next late-night bus, to just wheel on home from BART without even noticing the ride, because my new powerchair is so awesome and comfy. Though, an extra mile or two per hour of speed would be so perfect for times like that.

Then this morning I did the journey again. I saw the guy who lives on the street a couple of blocks from my house and we had a chat and then he followed me to the bus, getting on through the back door to flip the seat up for me very sweetly. An older lady on the bus got off at the same stop and told me how she was once stuck in the 24th St. elevator for 5 hours and now is too afraid to use the elevator.

At the 24th St. station (and I think the 16th too) I always marvel at the strangely inconvenient path for (wheeled) elevator users. The elevator lets you off a few steps from a ticket entry point, the midpoint of the concourse. But the only wide ticket entry point suitable for wheelchairs is at the very far end of the station. Then, you have to go all the way to the extreme other end of the concourse to the 2nd elevator to get to the train platform. If they would put a wider entrance at one of the entry points in the middle of the station it would cut 5 minutes out of my navigation of that station. No one cares and I don’t really care since I am motorized but if I were in a manual chair, it would matter since it is a long extra distance to push yourself! Still, seeing it be so non-optimal bugs me every time I’m in there!

On BART I noticed an ad for some bed sheets that promised the sheets are good for more than just sleeping. The picture in the ad showed three people’s feet, with socks on, friskily entwined as if they were having a fabulous, but dorky (naked except for their socks) threesome. Why you would want to be under a sheet in that situation is beyond me but maybe it helps them forget they’re wearing their socks during their strange orgy apparently happening on an ugly beige 70s shag rug. The socks were somewhat masculine coded for one pair, more polka-hearts femmy and with smaller feet in another, and then the 3rd pair of socks seemed more ambiguously gendered (yellow, medium size, non-hairy) so I guess that is a win for bisexual threesomes everywhere, even on a giant ad on the BART. (P.S. to the ad author: no one says “throuple” in real life.)

frisky advertisement

A man sitting under the amazing ad for kink-positive sheets reacted with miming exaggerated shock when I moved my right leg to wiggle my foot and ankle around as if he had just caught me in my extreme naughtiness of faking the need for a wheelchair. Dude! You caught me! I can move my legs! I’m totally not paralyzed! He stared at me, grinned, stuck out his leg, and waggled his foot around while raising his eyebrows. It being 9am after New Years Eve I didn’t really have the energy to engage so I played Threes on my phone and didn’t look up any more till he got off the train at Oakland West.

I varied my trip it a little by going to 19th Street Oakland and taking an AC Transit bus. My sister was saying that downtown would not be “exciting” on New Year’s Day, but it was just because it was so empty, fresh, and sparkly, and also because I am not often there and I like to explore all the pathways to get to a place at my leisure when there’s no time pressure, which comes in handy sometimes in the future when I will appreciate knowing exactly where the elevator and bus are at 19th St.

Downtown Oakland looked so pretty, clean from the rain, everything looking green as well, art deco buildings all shining in the morning light. I was at the bus stop near the Oscar Grant mural, across from a building with coppery green panels, amazing windows with sort of pointy arrow motif, and these black tiled and scuplted columns at either end. It was just gorgeous! I could hug that whole building!

Oakstop Building

I just had a look to see if I could find info about it online. LocalWiki to the rescue! It is the Bowles Building at 1715 Broadway. As always when I come across LocalWiki I think of when I just randomly met one of its creators, Philip Neustrom, in Ritual Roasters in like 2005. I was sitting across from him on some couches near the window, noticed his excellent laptop stickers & asked what localwiki was. From our conversation I ended up inviting him and Arlen to speak at Wiki Wednesday and I think later on in some similar wiki-ish context I met Britta Gustafson and Marina Kusko who both love wikis and hackerspaces and are awesome.

At my sister’s I kibbitzed on a game of Settlers of Cataan, ate steak and some gingerbread with apple butter, showed some details of nethack to my nephew, and demoed Inform7 for my sister who immediately started messing with it. It was fun to see them both jump in. When I left, my nephew was gleefully falling through trapdoors in the Gnomish Mines and I’m about to play some more nethack with him today. At the party at Susie’s house nearby I ran into a lot of people I knew. Polythene Pam was playing when I arrived & people were singing along to a song that was incredibly familiar but that I don’t know the words to. I had one of those pre-crone moments where you see someone dressed in YOUR EXACT OUTFIT FROM 25 YEARS AGO and freak out a little in a happy way because they are SO ADORABLE and ‘my’ cultural aesthetic has not died. Seriously this girl was in my same outfit and even in my haircut and middle-of-the-nose-ring and it made me want to cry and also want to hug her but that would have been weird. Sat with Katherine and Nabil, we petted Nabil’s reversible sequin pants (!!!!) talked with Emily a bit about how strange chronic pain or health issues can be, I met some people who were super nice, then I ended up talking with Asheesh in the kitchen, Yoz showed up, Gina showed up just as I was leaving early for my middle of the night journey home.

On BART a guy started yelling a lot but the woman with him (wife? sister?) was composed and philosophical. She rolled her eyes a little once in a while or patted his knee calmingly and acceptingly. I moved up to be right across from him because I thought he was not dangerous, just agitated, and I figured I could apply my de-escalating presence usefully (or deflect his attention from the teenagers he was yelling at) He had a few themes and varied them from Jesus, the bible, cops who kill people and their families which is tragic, homosexuals (could not tell if positive or negative) and how he loves us all (even if he sounds angry) and wants the best for us. I listened and actually so did a drunk guy nearby though he was more laughing at the yelling man, but he kindly called him brother and agreed with him I think doing the same de-escalation technique as I was. The woman next to him in an elegant headwrap carrying a cane then sort of cajoled him off the train. Mostly I felt worried about him and not the people around him (you could easily see someone taking him the wrong way and calling cops on him) So I wish them luck and hope they got home safe.

Home with quite a lot of motoring around, at 30% battery, wishing for just a bit more hefty of a powerchair battery or even an entire spare battery as insurance. Instead I am going to get an extra charger cord and carry it on the chair at all times in a little pouch. Though I don’t usually name cars and wheelchairs or my own body parts, I have decided to call the chair ‘Mr. Beep’ (borrowed from Ahmet the Blind Captain‘s kayak navigational system, because it’s just such a great name and makes me happy to say it).

Celebrating The Winter Sewerstice

Yes! It’s that time of year, the rainy season in San Francisco, when you should run out and Adopt a Drain! Pick a convenient drain near your home from the map, and commit to clear the leaves from it every once in a while so that no one will get flooded on that corner or have to wade through a gross, trashy, leafy pond at the curb during a rainstorm.

I had no real reason to do this but went downtown anyway out of curiosity to the parking garage of the SF Public Utilities Commission where I was given nice leather work gloves, a sturdy dustpan, my choice of brooms (I took the small one which I could strap onto the back of my wheelchair), and a yellow utility vest.

Inspired by the cameraman asking me questions about the Mighty Civic Feelings that led me to adopt a drain, I decided to name my drain at Mission and Cortland “Drainy McDrainface”. I also mentioned liking open data projects and reporting problems with sidewalks, streets, and intersections through 311.

Every time it’s about to rain significantly, the city sends me an email reminding me to check my adopted corner! I go out and give it a poke! From my friends’ feedback on Facebook it sounds like Oakland, Belmont, and Redwood City, and likely other towns in the Bay Area have similar programs.

I was sort of hoping they would let me drive a street sweeper, or give us all an informative tour of the SFPUC building and a certificate of Drain Adoption with a gold seal on it but…. alas, no. Maybe next time!

So what should the holiday name be for this event? Drainukkah? Sewermas? Winter Sewerstice?

Today's small political actions

Today I am reaching out to my friends through chat and email, both hackerspaces I’m connected with (Noisebridge and Double Union), our various women in tech organizations, and in person. I woke up this morning (from my grief and disassociation last night) with staunch, fierce determination full of energy and fire and ideas.

I read through the President-Elect’s 100 day plan. Have a look. It’s quite scary. For instance how many people do you know who have health care through the Affordable Care Act, or who have it through their marriages to same sex partners — here we have a direct threat to their family health. Also deeply on my mind – what will happen with Sanctuary cities?

My friend hazelbroom and I met for coffee and discussed our lives, what we do to support others, what support we need, what we can change, what structurally we might be able to affect. A lot of my ideas are around mutual aid networks. How can we create them and make them sustainable? But here is a brief outline: better self care, mutual support for activists, support for others in our communities and beyond, political engagement with whatever politicians represent us. We try to move beyond a charity model and it is often not greatly successful.

For me, I have good mutual support with several friends for example I am around to help out if a friend is down on their luck and needs help with a medical bill, or getting a ride, or groceries during an illness, or wrapping your mind around a complicated legal or bureaucratic situation — and many friends have helped and visited me when I’ve been in difficulties. In those situations, boundaries are hard to negotiate and maintain – hard to even articulate. Learning to have that kind of conversation is likely part of the work we need to do. Hazelbroom pointed out that as queer folks we have more practice than many others with that kind of “chosen family” bond. Those bonds are something more like quasi-cousins, loose partnerships for emotional and economic support. I have many ideas here, and will be writing about them over the coming days and weeks.

Our first practical action was to leave the cafe and go a few blocks down the street to the Bernal Heights Neighborhood Center. We signed up as volunteers and got some information from them and talked to Executive Director Gina Dacus, who super nicely took the time to give us an outline of what the BHNC does. I knew already they provide a lot of the low income housing support of our neighborhood and there is some sort of senior center. I found to my happy surprise that the senior services and classes are “senior and disabled” which means : Free senior/arthritis tai chi classes for me just a few blocks away, JUST what I need and have been wishing for!

We described some of our skills for Gina (Hazelbroom: she is an RN, so can give flu shots and that sort of thing! Me: some thoughts on helping with informational discussions of wheelchairs and scooters.) I am donating to the Bernal Heights Neighborhood Center right now, online. Our next step is to pull in our local friends and neighbors (including all our energetic, healthy teenage children) to show up to the community engagement meeting, and listen to see if we get any immediate ideas where we might be needed and we can be helpful.

Another next step, I am donating immediately to CARECEN SF, picked a bit randomly out of a list of community organizations in my neighborhood of Bernal Heights-Mission.

colorful mural at 26th and mission

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 !!

Mozilla Summit 2013: bugs, crafts, and fun

The Mozilla Summit in Toronto was a lot of fun. I met so many intense, idealistic, motivated open source contributors, it made me feel renewed energy for my own contribution.

On the first day I heard some of the keynotes but missed Mitchell Baker’s keynote on the Nature of Mozilla, which I’m going to watch today. People were talking about it through the rest of the conference, so I’m curious.

The talk I did was called Awesome Bugzilla Tricks and was a fairly short presentation of some tips for using Bugzilla.

As we went through these tips, the talk turned often into a good discussion of how people use these features of Bugzilla. We thought of a new way to implement Bugzilla tags to look more like browser bookmarks.

People talked about their own workflow as we went around the room describing what we do with bugzilla.mozilla.org! That is usually my favorite part of a workshop level technical discussion. It is like a series of sharing mini-demonstrations about actual working process, what we use and what we do and why. That is very illuminating. I realized in our discussion that I was talking with Kohei who made bzdeck, a tool that makes reading Bugzilla.mozilla.org bug reports more like an email inbox. I had particularly wanted to meet him so was very happy he came to the talk and the discussion! 😀

Durng the talk I said something a little weird and abstract that was not in my slides, inspired by the discussion. Here it is…

As a literary critic I find it fascinating that it is a huge collection of textual information which we engage with as authors and readers. It is like the ultimate “difficult work”, like reading James Joyce except 900,000 times better and with a more interesting result. There is no way to make it easy to understand, even if you can make little pieces of it easier to use and learn, the underlying information and tasks are beautifully complex and demanding for anyone who engages with it, which means you can’t fail to learn something if you try.

Then, luckily, we went back to talking about practical things, features, dashboards, and workflow.

The other main activity I did at the Summit was to set up a big table with craft supplies. Based on an idea of Lukas Blakk’s, I set up beads, string, and charms shaped like ladybugs, dragonflies, bees, and beetles so that people could make necklaces, bracelets, and other wearable souvenirs. The beads had numbers and letters so that you could spell out the number of your favorite bug.

People did just that!

I loved seeing people think about what bug was their favorite or most important to them personally. Sometimes a first bug, or one that people were proud of fixing, or one with an important, complicated discussion. Several people told me that during the Summit, they looked up other people’s favorite bugs from the bug bracelets, and learned something interesting.

Bug 356038 was represented by number and by its Bugzilla alias, BCP47:

BCP47

Rust and Github bug #5677, ‘Rustpkg “ready for use” metabug’ got some love:

Tim with Rust bracelet

Vu gave a shout out to bug 780076,

bug bracelets

And here is another bracelet featuring bug 808964,

Bug 808964 bracelet

For my own favorites I made three objects, one a wire necklace for bug 923590, “Pledge never to implement HTML5 DRM”, and a bracelet and a barette with my first patch because I was proud of submitting a patch. The EME or DRM issue was discussed very intensely on Sunday by many engineers. Feelings definitely ran high and people were determined to continue discussion. I was glad it got an official slot in the schedule for discussion and that there was widespread interest.

Favorite bug maker party

Bug 298619 was put onto a cell phone charm along with a blue and orange glass bead shaped like a beetle!

bug-charm

Many other people made Mozilla or MozReps necklaces, spelled out their names or their loved one’s names, with bug charms, or with wire, like this beautiful and creative copper wire creation:

copper wire necklace

And this Maker Party necklace!

Maker Party!

This resulted in “conference swag” was personal and made on the spot, worn and also given as presents! Many people commented that they felt soothed and comforted by hands-on activity in the middle of intense social interaction. I observed that people discussed what bugs or words to spell, how to design their objects, and what techniques to use, very collaboratively, so it was a nice physical representation of work and process.

Mozilla Summit crafts

After the first day, I left the craft station open 24 hours in the lounge, replenishing it with beads from West Queen Street on day 2 becasue we ran out of the letters Z and A, popular in spelling out “Bugzilla” and “Mozilla”. Of course this was because we were in Canada, where they use a lot of “eh”!

I would do this again at a conference, and now I know from experience what supplies are needed and which things are likely to be popular.

The other silly and fun part of the conference for me was wearing (and lending to people) the brainwave controlled robot fox ears! The looks on people’s faces, so priceless, as they realized the ears were really moving. Everyone who tried it laughed very hard!

ears!

robot ears

Thanks for a great and inspiring Summit, everybody!

Hurricane relief: Do something!

Aleja and I met online through GimpGirl years ago. I got to know Nick as well; we chat often about space exploration, writing, and comics. We have mutual friends like Jen Cole and Ron Sidell. We met in person in New York finally! Both at the BlogHer conference and then over Thanksgiving while I was in town for the Committee to Protect Journalists fundraiser.

aleja & me

nick working on his webcomic

On Monday I was asking Aleja and Nick if they had anyone with them. Akemi had come over to stay with them through the hurricane but they did not expect at all to lose power and water. I was on vacation in Mexico. My electric mobility scooter had broken, so I had limited ability to go places and was spending a lot of time online following the news and writing to friends.

From my work during and after Hurricane Katrina I know how fast situations can deteriorate and how important logistics are. Simply having people on the spot is amazingly useful. Once they are there, they can see what needs doing. I offered to reach out on my social networks to see if anyone near them might be able to come over and help out. At that point I began to realize the complexity of what support they might need, as well as many of the pressures against asking for help.

Personally, I have a ton of support and resources, yet it only takes a little change in my circumstances to unbalance the whole house of cards. When my needs change, or become more visible, other people sometimes then begin to treat me like I’ve crossed a line into complete loss of control of what happens. I didn’t want that to happen to Nick, as it so often does, and for him with life threatening consequences. And for Aleja who I love dearly I could picture how outsiders would not be able to see the level of work she does and how necessary it is. We value our independence, including our ability to plan and ask for help. But for me personally that comes with a confusing mix of pride and shame, fear and anger, for the times things don’t go as I had planned and predicted. I struggle with this. People are very, very disrespectful and I don’t like to be dehumanized. But to get along and survive, sometimes we have to just eat disrespect. For Nick and Aleja, crossing that line could mean someone would try to force Nick to evacuate without real infrastructure in place to support them and his health care, and his breathing. (And in fact, that just happened. TWICE.) Being evac-ed could kill him, but even if it didn’t, would it result in some bureaucrat or social worker deciding he should be incarcerated — forced into an institution? Would it disrupt their lives to the point where Nick and Aleja wouldn’t be able to come home together? (They already can’t get married.) When I’m casually dehumanized I lose a little dignity and I get mad. When Nick is, his life is on the line. William Peace describes the dangers of the medical model of disability very well in his blog Bad Cripple, which I recommend highly.

In this photo Aleja and I express our feelings about oppression and ableism by flipping them off with a smile:

aleja and liz express their feelings

Anyway, I worried that I was pressuring Aleja to consent to my sending in some stranger (though a friend of a friend) into their home whether to help with personal care or just to bring them food and water or try and find a way to get power to Nick’s breathing equipment. As soon as they said it was okay, I put out a call. It propagated quickly. Suddenly thousands of people were twittering to me or messaging me on Facebook. I was frantically trying to apologize to Aleja over IM for embarrassing them since my twittered request for help went way out of control. Over the next few hours it became apparent that a support network would have to mobilize. And it did! Three out of the thousands were able to offer practical help rather than just saying “Call 911! Call FEMA” (yeah right!!!), and they joined what was quickly organizing to be a team effort from people who hadn’t known each other before. I was glued to my computer talking with people, gathering information from many sources and redistributing it to others, trying to spare Alejandra’s and others’ limited cell phone batteries. Len Burns became my point of contact with Aleja. They needed sterile water, rides for their nursing/PCA staff because the subway was not running, cash for all sorts of things, drinking water, batteries for flashlights, and many more things that had to be brought up and down 12 flights of stairs. Leslie Freeman was the first to get there, I think, other than Akemi. They are both beyond awesome! My friend Lauren who is a journalist and feminist activist also made it there.

Then I began following Crystal and Sandi Yu’s epic road trip in the middle of the night driving from Boston to New York City, stopping at every Walmart, AutoZone, and truck stop on the way to get supplies. When I realized Crystal is also a wheelchair user and that she and Sandi had barely met, I was cheering them on so hard and felt a deep happiness to find these kindred spirits doing something I could at least support from a distance. I donated quickly over PayPal and Crystal was able to use the money right away with a PayPal debit card. Meanwhile, Amalle was coordinating an ever growing Google Doc of information about how to help and exactly what to do. There was a schedule of people volunteering for shifts and to drive Nick’s nurses back and forth from home to work.

Crystal and others also began, at some point, getting money from Portlight — where I am also now donating! Carrie Ann Lucas connected the group to Portlight. I really like getting cash directly to people in a crisis and to “unofficial first responders”, as I will never forget the amazingness of handing wads of 20 dollar bills (given to me by strangers who read my blog) directly into the hands of evacuees in the Houston Astrodome so they could get to their families, buy diapers and gas, and get the heck out of that refugee camp. Aside from the help…. they were fueled by trust. No fuss, no forms, no proving things to people behind desks, just direct practical help.

I love Crystal’s quick and detailed writeup of the history of how she became involved and what she and Sandi did, from Crystal’s blog LittleFreeRadical: UnconVENTional Aid: Helping Nick Dupree, Social Networking Style. I would love to hear the stories of others like Leslie and Amalle and Akemi who are doing so much as well as what this has been like for Aleja and Nick. It is important not to lose our history.

On Wednesday I started doing research on legal issues for Len Burns, to see what options existed for protecting Nick against other people’s non-helpful 911 calls on him, and discussed battery tech and power inverters with other people active in the efforts. At some point Tuesday or Wednesday I Facebook-friended and began talking with Leslie and then Crystal and others working to help; I could see their comments on Aleja and Nick’s and Len’s posts. Now I’m happy to know them and can tell we have a lot in common — our willingness to jump into a situation and improvise, for one! And I understood Bethany Stephens‘ use of the word “cripfam” a bit more deeply because I felt that recognition of friends who will go all out, who know what “solidarity” means…

Meanwhile this happened: Invalid New Yorker’s Pals Keep Life Saving Gear Running. While I can see the effort this reporter made to be helpful, the disrespectful language and the way the story frames Nick and Aleja both made me furious and sick to my stomach. The reporter couldn’t even be bothered to get a quote from Nick but described his very act of speaking as “burbling” etc, in ways that are classically dehumanizing… as non-speech, as non-human, as alien other. I can see reporters will think this an interesting story — and it is, but not like this, not this easy win at Disability Reporting Bingo. Most of the people helping here are also people with disabilities, for example. There are stories to tell about technology, the Internet, hardware, proprietary medical tech, the connections to OccupyWallStreet and activism, and many other complexities. I wrote to the reporter and his editor, and commented (mildly, for me, and without swearing) on the story.

My main usefulness has been to bring attention to the situation and get others involved. People pay attention to my thoughts on this because of my history of public speaking, and blogging; my involvement with hackerspaces, DIY technology, and activism; and because I did some useful on-the-spot work for Hurricane Katrina relief. I also was able to donate money directly to Crystal and to Portlight. Please pitch in if you can, to share resources and skills, because the situation over the East Coast and NYC in general is still deteriorating as gasoline and supplies run out across the area.

Here’s how to help right now: Lending a Hand

Big organizations like FEMA and the Red Cross do useful work, but usually not at this stage of chaos on this individual level. A week and a half from now they’ll be in charge whether they’re effective or not, but right now it’s anarchy, so we have a chance to be the most useful with direct action. Just go…right now while it’s crucial… go to wherever the problem is, LISTEN TO PEOPLE… and pitch in. Don’t just donate some old clothes or cans of food as if you can dump your trash on other people and it will magically make them middle class and give them all the infrastructure of your massive privilege! Go to gather information, find out what is needed, improvise, and DO SOME WORK.

On bus lifts and complaint forms

Now that I am using a mobility scooter and can’t drive, I ride a MUNI bus about 4 times a day in San Francisco. Most of the time I get on the bus and everything’s fine. A non-trivial amount of hte time, there is some hitch to accessible MUNI travel and either I cope with that gracefully or I get quite angry.

Most of the time in the last few months I get too discombobulated to document the incident. But I’m resolving to do so consistently from now on not for my own desire to vent but as a political act that might benefit many people and might help us act together to improve things.

When I talk about, or twitter or blog about access difficulties on the bus, people tell me “well you should report it”. I found that reporting it is quite complicated. Also, while dealing with mobility issues and a lot of pain and all the demands of my daily life, even on medical leave from work, it’s been daunting to consider this.

I would like to describe some of the aspects of MUNI transit with a wheelchair and to take a good look at the process of making an official complaint. The complaint process is fairly clunky and off-putting. I’m thinking about how to improve that process and make it productive and useful. Meanwhile, I’ll make a policy for myself of not only going through the formal complaint process, but also twittering the bus number and situation. For my own data tracking, I will take a photo of each bus I ride, with the bus number, uploading it to Flickr. I’ll then take notes on access in a paper notebook. For each Flickr photo I will type up my access notes, and tag the photo with #accessMUNI, the bus number, approximate time of day, details of the experience, and #fail or #win. That will give me some data to work with personally.

I wonder how many lifts break on MUNI in a day, in a month? How many complaints about bus access are there? Is that or should it be public information? Could I build a work-around, an end run, basically an alternate complaint system that has intake from paper forms (mailed to me personally), text messages, and a phone app? Or a simpler web form for complaints?

Here is how a smooth bus-boarding goes:

* The driver sees me and immediately tells the apparently able bodied people on the bus and the people waiting for the bus to use the back doors. The driver extends the lift.
* I get on the lift and it brings me up onto the bus
* The driver or other passengers flip up some seats to make room for me and the chair
* I settle in and we’re good to go (meanwhile, everyone else has gotten on or off.)

Keep in mind the wheelchair seating areas, two on most buses, are midway back in the bus, so to get on or off, I have to go past three to 5 inward-facing seats which might be full of people, some of them with shopping carts, strollers, walkers, and suitcases.

bus-diagram.jpg

In a bad situation, here is what can happen:

* The driver does not know how to operate the lift.
* The driver tries to extend the lift, but it doesn’t work.
* The driver claims the lift is broken.
* The driver says the bus is too crowded and won’t let me on.
* The driver lets all the other people get on the bus through the front door, filling up the seats, then extends the ramp, but now the bus is so full it is very hard to get to the wheelchair seating. People have to get up or move or stand on the seats to let me pass. The people on the bus sometimes get angry and impatient at the fuss and delay.
* The driver does not stop for me at all.
* There are already two wheelchairs on the bus, so the driver won’t let me on.
* Driver has not pulled up to the curb in a place where I can get on or off, and then has to reposition the bus to extend the lift.
* The lift breaks in such a way that the bus can’t move because the doors won’t close.
* I get on the bus but the lift won’t work again to let me off.
* The lockdown clamps either don’t work at all, or lock in a wheelchair’s wheels and won’t release. (I don’t use the locks anymore so I won’t go into this.)
* There is no button for me to push to indicate I want to get off the bus and need the lift, so I have to shout to the driver or get other passengers to let the driver know. (This doesn’t always work: I can miss the stop, or it can mean the driver yells at me.)
* Many other bugs in the system that I haven’t thought to list.

As a more minor complaint I have noticed that all drivers get me to come onto the lift, then lock the front flap upwards so I can’t get off again. Then the driver will sometimes get up to clear passengers from the wheelchair seating area and flip up the seats to make room. In that situation I am sometimes sitting in the rain waiting. I always wonder why the driver doesn’t move the lift to bring me onto the bus, and out of the cold and rain, first? Don’t they think? But, whatever, at least I’m on the bus eventually.

Another detail that would improve courtesy is that when the drivers (correctly) ask people waiting to get on or off to use the back door, and they begin to extend the lift, they almost always overlook obviously elderly and disabled people using canes or simply very frail. It would be much more in keeping with the spirit of things if the driver would encourage these folks to get on the bus through the front door, then deal with the lift and wheelchairs. I often tell the driver, “I’m sitting down — that lady isn’t! Does she need the bus to kneel, first?” But it usually doesn’t work and the driver continues yelling in some elderly person’s face for them to “use the back door”.

I wonder about the training the drivers go through. Most of them can competently operate a lift and are resigned to helping get wheelchair users on and off the bus. A very few are kind and treat disabled people with human decency as a matter of course. I see them deal with difficult people and situations gracefully. It might improve things in general if the drivers had some basic consciousness raising about people with disabilities. Drivers may assume a wheelchair user is paralyzed (they often assume this for me, yet I can walk ) They shout, or condescend, or pat me, or bring in a lot of assumptions to our interaction, and then I see them repeat that pattern with other disabled people who get on the bus. You can’t make people be nice and I don’t need my ass kissed because I’m disabled, but maybe some of that bad attitude feeds into the access problems that I see happen, especially with drivers who regard us as an inconvenience and want to use any excuse to pass us up and who seem to want to make us feel it.

When a lift is broken and a bus passes me up, I always wonder what happens. Does that driver just continue on for the rest of the shift, passing up an unknown number of people who needed a lift? Do they report the broken lift right away? What happens?

Here is a #49 bus, number 8195, that passed me up yesterday at Van Ness and 26th, claiming a broken lift:

49 bus with broken lift

So, moving onward to the complaint process and the forms online. Basically this is the bug reporting system. San Francisco uses the 311 system. Here is the 311 page that leads to the complaint form. People with compliments or complaints can use the web forms, or can call 311 or a full phone number to give feedback. There is a link to an accessible form, but it isn’t really an accessible form, it’s instructions to call the 311 number if you can’t use the web form.

Here is screen one of the complaint form. It asks for an email address and a repeated email address confirmation. You have the option to skip this step.

MUNI complaint screen 1

Then I get a screen that either adds my address to the 311 database, or tells me it’s already in there. It tells me to call 911 in a real emergency and gives me a disclaimer about privacy. There are Back and Next buttons.

MUNI complaint screen 2

Screen 3 is a beauty. It’s 26 fields, 8 of them required.

SF MUNI complaint screen 3
Here are their fields. Required fields are marked with an asterisk. Just for fun, I bold faced the options that I need to complain about most often.

1. First Name
2. Last Name
3. Primary phone
4. Alternate phone
5. *Email address (never remembered from one session to the next; no login possible)
6. Address
7. City
8. State
9. Zip code
*10. Request category — a dropdown menu with these options:
a. Conduct – Discourteous/Insensitive/Inappropriate Conduct
b. Conduct – Inattentiveness/Negligence
c. Conduct – Unsafe Operation
d. Services – Criminal Activity
e. Services – Service Delivery / Facilities
f. Services – Service Planning
g. Services – Miscellaneous

11. *Request type. This dropdown changes depending on which Request Category was selected in field 10.
a1: 301 Discourtesy to Customer
a2: 302 Altercation: Employee/Customer
a3: 303 Fare/Transfer/POP Dispute
a4: 304 Mishandling Funds/Transfers
a5: Refused Vehicle as Terminal Shelter
a6: General Unprofessional Conduct/Appearance

b1: 201 Pass Up/Did Not Wait for Transferee
b2: 202 Ignored Stop Request
b3: 203 No EN Route Announcements
b4: 204 Inadequate/No Delay Announcements
b5: 205 Offroute/Did Not Complete Route
b6: 206 Not Adhering to Schedule
b7: 207 Refused to Kneel Bus/Lower Steps
b8: 208 Did Not Ask Priority Seats to be Vacated
b9: 209 Did Not Pull to Curb
b10: 210 Refused to Accomodate Service Animal
b11: 211 Unauthorized Stop/Delay
b12: 212 Did not Enforce Rules/Contact Authorities
b13: 213 General Distraction from Duty

c1: 101 Running Red Light/Stop Sign
c2: 102 Speeding
c3: 103 Allegedly Under Influence of Drugs/Alcohol
c4: 104 Using Mobile Phone or Radio
c5: 105 Eating/Drinking/Smoking
c6: 106 Collision
c7: 107 Fall Boarding/On Board Alighting – Injury
c8: 108 General Careless Operation

d1: 501 Altercation: Miscellaneous
d2: 502 Larceny/Theft
d3: 503 Fare Evasion/Transfer Abuse
d4: 504 Disorderly Conduct/Disturbance

e1: 601 Delay/No-Show
e2: 602 Bunching
e3: 603 Switchback
e4: 604 Vehicle Appearance
e5: 605 Vehicle Maintenance/Noise
e6: 606 Lift/Bike Rack/Securements Defective
e7: 607 Track/ATCS Maintenance
e8: 608 Station/Stop Appearance/Maintenance
e9: 609 Elevator/Escalator Maintenance
e10: 610 Fare Collection Equipment
e11: 611 Signs, Maps, and Auto-Announcements

f1: 701 Insufficient Frequency
f2: 702 Lines/Routes: Current and Proposed
f3: 703 Stop Changes
f4: 704 Shelter Requests

g1: 801 NextMuni/Technology
g2: 802 Advertising/Marketing
g3: 803 Personal Property Damage
g4: 804 Fare Media Issues
g5: Muni Rules and Regulations

12: Expected Response Time (7 days)
13: checkbox for Disclaimer
14: * Vehicle number
15: Employee ID
16: Employee physical description
17: * Line/Route (Dropdown of all the routes)
18, 19, 20: Date, Time, am/pm
21: Location
22: * Cross Street
23: * Details
24: Do you want a response letter?
25: Was this an ADA violation?
26: If it was an ADA violation, do you want a hearing?
(If “Yes” is selected, and the operator is identified, a telephone or in-person hearing will be scheduled to address the issue)

Sometimes the form returns an error message!

muni complaint form error page

When it works, I get a confirmation screen with an option to go back or to confirm the info.

After confirmation I get an issue tracking number, and if I’ve given my email, an email with all the information I submitted plus the tracking number. So, if a person goes through all these screens successfully, the tracking system seems pretty decent.

My main criticism of the form is that it requires the user to decide on a taxonomy for their complaint. The complaint must fit into one of the dropdown menu options, but the possible options are shown only after the user decides what category it should be in. The complaintant should see all the options and should have a clear “miscellaneous/not included in these options” possibility from the start. THey shouldn’t have to put the complaint into a category at all. The computer can assign a category for it based on the user’s choice from a single dropdown. Uncategorizable complaints, or complaints from people not patient enough to read through the dropdown options, should be accepted too, because they are potentially useful data points. I don’t care if someone just wants to say “Fuck You MUNI” — that is not super constructive, and yet it still gives useful information in that someone was dissatisfied.

The MUNI complaint form appears to be designed with an official bus inspector in mind as the “complaintant”.

I have never seen a bus driver put the restraint system on for a wheelchair user, by the way, though some drivers have tried to get me to lock myself in with the wheel clamps. I’ve actually only seen one guy in a cheap E&J chair with no working brakes use the wheel clamps and never seen *anyone* use the belt system. It is unrealistic and not very workable. I’m sure someone out there uses it and likes it, though.

The “compliment” form is much simpler than the complaint form.

I can picture many other ways to collect this data. Maybe by building a system to take simplified complaints by text message from a feature phone (like Krys Freeman’s Bettastop prototype), or from a phone call. Paper complaints should also be possible, maybe by postcard. Complaints should be collected to figure out where problems may be clustering.

There could be a variety of useful smartphone apps as well. Though how many other disabled people on the bus do I ever seen with an iPhone? Take a wild guess. None! (That number will grow as GenX ages.) Accessibility problems should be reported via smartphone by able bodied people routinely, rather than that issue being left to the people with the least energy and resources.

It is hard to know what details you will need in making a complaint. Bus number, time of day, route number, location of the issue are the main details. I could make preprinted notepad forms and distribute them to other people on the bus, asking them to collect data.

I could see what my experimental data collection on Flickr leads to and if I can get anyone else to do the same and use the same hashtags.

And I could certainly go to one of the MUNI accessibility committee meetings to see what they talk about. Mainly at this point I’d like to know what happens with the data collected and how I can obtain it. Do particular lines have more wheelchair users, or more lift breakdowns? Particular times of day? What could be done about that?

Ideally, lift breakage or other issues would be reported in as close to realtime as possible, and hooked into a great open source system like QuickMuni? What about an app that knows what bus I’m on already, and for which I can just hit a few buttons to give simple feedback?

The thing that pisses me off most of all is trying to ride the bus during a busy time. Drivers then sometimes let 20 other people get on the bus first through the front doors. Good drivers tell everyone to board from the back door, and lower the lift immediately. Bad drivers delay everyone if they let the able bodied people go in the front, then don’t get them to move back, and then the driver refuses to let me on the bus. Leaving me in the dust is just the logical, reasonable thing to do in those driver’s minds. I had one driver on the 24 line yell at me for not *thanking him* for explaining why he wouldn’t let me on the bus. You can imagine my incandescent rage as I am deemed inconvenient and it is as if I have no right to take up space, while every other person, their shopping bags, strollers, and so on are given as much convenience as they could wish. It is for those moments that I’m going to take a photo of every bus I attempt to board, even before there is a problem.

Belladonna readings in NYC

The Belladonna collective has some kick ass poetry events and I really wish I could go to their upcoming one:

Our Material Lives: Feminism and Poetry at Various Ages

Our 2011-2012 season will call to attention the material life of the artist, as person, who, in addition to being creator/conspirator to a body of work, possesses a physical body, and real financial, medical and social needs. To inaugurate this season, we’ll begin with an unique event focusing on feminism and writing in the many stages of our poetic lives.

The evening will include an exclusive screening of The Poetry Deal, Melanie La Rosa’s film about legendary poet Diane di Prima, readings by internationally acclaimed poets Ana Bozicević and Caroline Crumpacker, with Hannah Zeavin and an opportunity for conversation among presenters and audience.

If I could I would also subscribe to their entire series of printed books and go to their readings which all sound great.

While it is the people I haven’t heard of who I really want to hear…. still it would be kickass to be there for Anne Waldman‘s performance. She’s so weird and screechy, uncomfortable in a good way.

I’m going to listen to some of the Belladonna reading series mp3 archive today while I work. 20 minutes of Maureen Owen, fuck yeah! I’m downloading them now and making a playlist. Will blog anything particularly great.

It’s been too long since I’ve gone to readings regularly! I need a little poet community feeling! There’s so many readings in SF and regular open mics every day of the week. I’m thinking of trying to go to Word Party at Viracocha, or Smack Dab. I love to go to an open mic and take notes… and blog about it!

belladonna logo

Women Who Code hack night

The Women Who Code meetup and hack night yesterday was very lively! I look forward to going again and also going to CodeChix events if I can manage it. I think there were about 50 people there, of fairly diverse backgrounds and coding in many languages. I saw several people I knew like Hilz and Adina and Amy, but most were people I’ve never met, not people who show up at conferences or usual techie events, lots of recent comp sci grads with jobs at startups. There were a few people who are company founders and just interested in meeting programmers and hanging out with us, a few people just beginning to learn to code, and several people who told their way-back-when COBOL and BASIC stories. I gave away a huge stack of geekfeminism.org stickers.

photo from the 50s or 60s of woman at computer

The meetup was at the Blazing Cloud office in the Native Sons building which is an amazingly cool building, but not accessible, so I’m glad I managed it on crutches instead of bringing my wheelchair, which even if I’d been able to get it into the building, would not have worked in the tiny crowded office with people sitting all over the floor. Blazing Cloud looked like a company focused on giving programming classes mostly Ruby and other web dev stuff. I talked with a few people at the event who complained about their CS departments only teaching Java and C and being super … well… computer-sciencey, without teaching anything they wanted to know for building web or phone apps. So it was a good match between the host for the event and the people who showed up!

I had some pizza, beer, and cupcakes as I fiddled around with vim, vundle, Supertab, and Gundo (which Oblomovka had been showing me earlier) and setting up things with ExpandDrive so I can work on my VM dev environment *from my Mac* instead of ssh-ing into the VM. I think I’m getting to like folding in vim. Hilz explained her whole emacs setup to me which is similar and I think was called tramp; basically a thing so she can edit her remote files from her normal setup. While I don’t *much* mind hauling my .vimrc after me onto every server, vim bundles look extremely cool and I like the idea that I could keep it all in just one or two places (ie my laptop and maybe my main server in case I don’t have my laptop and want to work from somewhere else.)

Then I got totally distracted talking with Jesse and Judy who were starting to make a fun app with Ruby (which I’ve only tried once at a She’s Geeky workshop). Judy is making something to tag and search Starcraft VODs. Then we got gossiping about Noisebridge which she had just been to for a Ruby class and ended up staying all night learning how to use the Cupcake makerbots.

It was a lot of fun and even if it stays such a short event I recommend it. I think it will inevitably spawn some all day hackmeets though since no one wanted to leave or stop working on their projects 1 hour into it!! Actually, I would like to invite all the Women Who Code and CodeChix people to Noisebridge, which is a fantastic hackerspace open 24/7 (with an accessible bathroom and an elevator) and to the upcoming Hackmeet unconference.

On my way to BlogHer '11

I’m leaving this morning for the BlogHer conference in San Diego! I think this year’s BlogHer conference is going to be about 3000 people, our biggest ever. On our site I wrote up a quick round-up of mobile apps you might want at a conference as well as a brief explanation of securing your wireless connections with a VPN service — a “geeky conference prep” post. BlogHer also has a useful mobile app for the conference itself with maps of the convention center, the speakers and sessions, and the capability for people to build a schedule for themselves.

At this conference I’m moderating a panel on what happens when your blog goes viral, with Ashleigh Burroughs of The Burrow, a blogger who was shot by Jared Loughner in Arizona; and Nerdy Apple Bottom who suddenly was the subject of intense media coverage for her post on her son’s Halloween costume when he dressed up as Daphne from Scooby Doo. Both bloggers’ real names were revealed as a result of their sudden fame and they got thousands and thousands of comments and emails; months later they’re still fielding the effects.

I’m also running a Geek Bar session on “Internet Sleuthing” and another, with Skye Kilaen, on recovery from “Blog Disasters” — what to do if your blog goes down or is hacked, how to prepare to recover your data and rebuild your site. For the Sleuthing session I’ll talk about how to track people down and why you might need or want to do that as a blogger. The Geek Bar sessions are 15 minute workshops in small groups, repeated over a 1.5 hour time slot and I expect to give a mini-talk and then open it to hands on work and group discussion. It should be an interesting format and I think will also result in good social contact for the 5 people in each mini-workshop session, who will get to know each other in the process!

This year’s “disaster recovery” Geek Bar talk will be a good continuation of my longer talk last year, Fight Spam and Hackers! which was basically computer security 101 for BlogHer’s community of women who are very heavy users of social media and blogs and who are running their own sites but who may not have had the cultural background in geekery to have ever thought about how to crack a password. I brought up issues of privacy and anonymity, a subject that we talk about quite a lot as bloggers and as women, and tried to frame them in the context of our gender.

At BlogHer DC and Boston in 2008 I was on a panel called Blogging Basics: 6 steps to personalize, polish, and promote your blog which was a concrete list of ways to improve your blog. I still have people come up to me and tell me that they use the tips we gave in this talk! Especially the suggestion to print out your php code and css, and mark it up with a highlighter and notes in order to figure out what it’s doing and demystify it. In DC and Boston we also had a sort of Geek Lounge area set up for people to do hands-on work with their blogs in an informal setting; Sarah Dopp and I ran around the room talking people through tech support issues and usually everyone at a table would start to help each other out and collectively would know much more than they realized they did.

At these “geek” tracks it ends up being a mix of the more programmer or web dev types of BlogHer attendees and people who want to learn that stuff. The track is kind of a mini-She’s Geeky and leads to fabulous “hallway conversations” every year. The conference itself is amazingly lively and vibrant, with around 60-80% of attendees *and speakers* new to the conference and a very high percentage at their first tech conference ever. The conference tickets are cheap because we are highly and I mean *highly* sponsored by companies, with a huge expo hall of sponsor booths and all sorts of weird swag and contests and parties and sometimes individual people wandering around handing out bags of stuff. I think it was the year we were in Chicago that I came back with a pink Swarovski crystal covered Bluetooth headset, a vibrator, and a waffle iron in addition to Free Samples of about 5 kinds of detergent, snack food, retractable usb cables, flash drives, and I don’t even know what else. Everyone is kind of overwhelmed by the rush of women who are pair-bonded with their laptops and the joy of meeting people who you’ve read online for years especially when you find they are even more interesting in person. For myself I also really enjoy seeing the range of expertise people have and what kickass speakers they are — and wonder, are other conferences looking at our speaker list and using us as a resource to diversify their own talks and panels? I’m sure that happens to some extent but it should happen more.

I meant to write up a retrospective of my experiences at each of the BlogHer conferences but that will have to wait for another post! Meanwhile, enjoy this cute photo of me and my sister at BlogHer in 2006. That year we were inspired by the many online discussions of What To Wear to BlogHer especially to the big central party. In a sort of protest against worrying so much about what to wear anywhere, we wore ball gowns to the party and pretended to have a drama filled argument at the edge of the pool and then pushed each other in.

liz

Anyway, I look forward to another fantastic conference and am going to drive down to San Diego the long way, down Highway 1 and 101!