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Free comic book day!!

May 4, 2009 Liz

This weekend we celebrated Free Comic Book Day again. Actually I missed it, but Rook took Moomin to Lee’s Comics to pick up a handful of free comics.

It’s a great “secular holiday”. Moomin gets very excited about it!

Of course, we end up spending more money in the comic book store, but it’s worth it.

It’s always great going through the 10 cent and 25 cent comic book bins!

But my downfall is the big thick compilation books of old superhero comics.

And relatively new stuff, like Digger, but that should realy get a separate review. It’s a great comic for adults and for the YA crowd which could go down to about 9 or 10, Moomin’s age… with some ethics, religion, and scary violence issues, and a complicated story, so might not be ideal for earlier readers. I love it so much! It’s about a nerdy, tough, geology-loving wombat who gets lost underground and comes up in a country far from her home.

Manifesto overload – May 1, Modern Times Bookstore

April 30, 2009 Liz

Steven Schwartz and I are hosting a Manifesto reading for SF in X (SF in Exile) at 7pm tomorrow night, May 1, at Modern Times Bookstore. It will be ALL MANIFESTOS. Come by and join us in raucous, fiery polemics!

While you’re there, buy lots of books at Modern Times, which is a great neighborhood bookstore that supports progressive politics and activism.

Declaimers:

Annalee Newitz – Cyborg Manifesto
Danny O’Brien – Futurist Manifesto
Daphne Gottlieb – a wild rant of a poem, and the SCUM Manifesto
Liz Henry – bitch mutant manifesto
Naamen Tilahun – an original manifesto
Nick Mamatas – a short story to set you on fire
Steven Schwartz – Dadaist Manifesto
Zuleikha Mahmoud – Femme Shark Manifesto

With excerpts from the following extra fantabulous other manifestos:

Dada • SCUM • Provo Bicycle • Slut • Communist • Futurist • Unabomber • Art of Noises • Infernokrusher • Dogme 95 • International Werewolf Conspiracy • Surrealist • Bitch •
Vorticist • Turku • GNU • Femme Shark • Raver • Genderfree • Bitch Mutant • Headmap • Cyborg • Cluetrain • Anarchist • Yippie Voting • Up Against the Walls Motherfuckers • Declaration of the RIghts of Man • Bauhaus • LOL_MEME Bill of Rights • Cannibalist • And some too new to make it into this list!

Doors open at 6:30, reading starts at 7. $10-20 sliding scale, no one turned away for lack of money.

AND! The party moves to Zeitgeist afterwards for Sarah Dopp‘s birthday.

I’ve loved manifestos for ages and ages. They don’t pull any punches or pussyfoot around. No qualifying maybes, no disclaimers, no apologies, no hedging your bets. Take a position and state it with extreme fervor. Say it like you mean it! Rant and declare!

A few years ago Steven and I talked about editing a manifesto zine or an anthology, and that’s still a possibility. For this reading, I’m excited that so many of the manifestos being read or excerpted are feminist ones!

Here are two of my favorites, done in beautiful flyers – the Why Cheap Art? and Cult of Done manifestos.

Hurrah!!!!

Things to do with rubber bands

April 15, 2009 Liz

Moomin’s friend “Good Landru” has a toy that is basically a board with some nails around the edge and a bunch of different colors and sizes of rubber band. This is going to be my next craft project with Moomin. I ordered this to start with,

Rubber Band Ball kit

Which is nifty looking in itself and he might enjoy. Clearly it is just a big pack of rubber bands with instructions that say “Wrap these suckers around each other till they’re all gone” but unlike so many gimmicky toys, it’s cheap – only 4 bucks. So, I ordered it, it’ll come in the mail as a surprise, and then I can rummage around for a board.

***

We got the rubber bands! I still don’t have a board, but we made a great shoebox guitar and a sort of giant box-zither thing. I realized that Moomin doesn’t know anything about scales, or what a third is, or anything about music theory. He might like it.

My plan for the board is:

1 board about 1 foot square and maybe 1/2″ to 3/4″ thick
32 nails (I think finish nails will work best)

9 nails to a side, gives good scope for making complex rubber band patterns.

I’m not sure if finishing nails, with almost no head to them, will be best or not, so I might get a few other kinds for an experiment.

Anyway, I highly recommend a big bag of multicolored rubber bands – it has a lot of possibility for projects.

Watch out that your cats don’t eat the rubber bands!

The elusive kilogram!

April 15, 2009 Liz

Last night I had this conversation with Moomin. “I just want to make sure you actually understand this metric system stuff rather than doing the problems blindly. So let’s draw a little chart. How many grams in a kilogram?” “Um… ummm… ummmmmm…. Oh yeah! 1000!” “Okay, how many centigrams in a kilogram?” “There’s no such thing as a centigram.” “There is!” “No there’s not! They didn’t tell us that! Look, I wrote it down… Can you just let me finish this page? It’s my bedtime!” Bedtime is not a good time to explain the entire concept of the metric system so I gave in.

Later a certain person assured me that Moomin was right! Well, they are wrong! 8-P

And then led me into a delightfully pointless reading: Wikipedia: Kilogram.

The kilogram is the only unit not defined off a physical constant – it’s defined from this particular object, the 130-year-old International Prototype Kilogram or IPK. And a whole bunch of other metric units are defined using mass, like newtons, pascals, joules, amperes, couloumbs, volts, teslas, webers, candelas, lumens, and lux. (The plural is not “luxes”. I looked it up.) It was created and then defined as the standard. But some replicas of it were created, like the Kilogram of the Archives, and over time they have diverged from each other. The story of what they’re all made of, and how they’re periodically compared and verified, is pretty cool. And sort of insane. Is that a whole bunch of people’s life work? Making sure that we know how wrong our kilograms might be? Eeeeeee! That’s so hot!!!!!!

And so are multiple bell jars over a brass-looking pedestal thingie! It’s like The International Geek Thingamajig on a Steampunk Cake Stand of Awesome!

Burrow deeply into the kilogram article and you will get to the proposed alternatives that would tie the kilogram to a constant. Atom-counting approaches (I liked the Avogadro project, which would use a silicon sphere); Ion accumulation; and the rather sexy sounding watt balance method: the electronic kilogram!

I am tempted to show all this to Moomin but not until he finishes today’s tedious homework, which is three pages of textbook problems of temperature conversion. No one needs that many examples – it is very pointless. At the least I will wow him with the revelation that there are exagrams, zettagrams, yoctograms, and zeptagrams which I will prove through the irrefutability of Wikipedia because we all know the important thing to teach 4th graders is that Wikipedia is totally true.

Flip fantasia!

April 2, 2009 Liz

After Moomin’s school choir concert — in which 50 kids sang Nickelback’s “Rock Star”, “Time After Time”, “I’ll Stop the World”, and (again) Bohemian Rhapsody — I tried to get him to think of some very silly songs for adaptation for a kids’ choir. He was underwhelmed by the Langley School Project version of Space Oddity, and didn’t think that Sleater-Kinney’s Words and Guitars would translate well to choral adaptation. I disagree, it would totally rock and has great lyrics.

Anyway, after that I was treated to this improvised dance to Cantaloop:

After the first minute the dance gets amazingly interesting! I like Moomin’s improvisations very much. At some point I couldn’t resist dancing a little bit with him so it’s rolling shaky-cam time.

Photoessay of the 805 Veterans disabled parking problem

March 31, 2009 Liz

Here is a visual explanation of part of the problem with disabled parking at this building.

1:48 pm Tuesday March 31st. I drove into the front parking lot. I could see the front 2 spots were full. I drove to the back. (I didn’t take a photo.)

1:50 pm Tuesday March 31st. All three spots in the back are full.

As I paused to take this photo, a grey haired man in a suit and a dark SUV pulled into the reserved red zone, the spot next to the curb cut, where I was intending to park. I drove around to the front lot again to check the spaces there and to avoid having to interact with the man who was surely someone who works with the property manager.

A couple of minutes later in the front lot, the two spaces there were still full. They are both inadequately marked as disabled spots. Frequently, people without placards park in the badly marked spot on the right-hand side.

As I paused to take the picture above, the man in the suit who had been driving the SUV came out of the front doors and yelled something at me. I drove away, because I did not want to have any kind of confrontation with him.

1:55pm Tuesday. I drove to the back of the building again. The three spots were full, this time with the van gone and a different car in the space closest to the curb.

In retrospect, I think the man in the suit might have been yelling at me that there was a disabled spot open. I am led to think that he noticed me in the back lot, and knew specifically who I was.

It is a sign of the high demand for disabled parking spots at this building that by the time I drove to the back from the front, an open blue-placard spot had filled up. As I parked in the red zone in a “reserved” spot next to the man in the suit’s SUV, I noted another person with a blue placard driving past me and the full spots that were marked for disabled parking. I did not get their photo however. My camera was in my pocket and I was pulling my wheelchair parts out of the front passenger seat over the steering wheel and assembling the chair on the ground next to my car.

As I came into work from the parking lot I snapped this photo to illustrate that the “van accessible” spot is not properly marked or configured. The landscaping and the concrete bollard both potentially interfere with a van lift or ramp. The space is not wide enough and not properly striped.

The elevator doors in the building opened for me and I backed up to let out an elderly lady in a chair and her companion who was pushing her chair. We smiled at each other and I wished we could stop and have a good conversation. I admired the brilliant whiteness of her hair and she looked at my sparkly wheels; I wondered what she thought of them. Frankly, I enjoy getting to see the high number of other wheelchair users who come to this building to go to the PAMF clinic. We always have a friendly smile of acknowledgement or a nice word for each other.

That entire sequence (minus the guy in the van) happens nearly every day at this building no matter what time I arrive at work. By the time I leave late in the day, most of the spots are empty.

I hope that explains things a little bit better for the “able-bodied”. The good thing about this experience today is that it wasn’t raining.

ADA struggle at my workplace

March 30, 2009 Liz

It has been at a year now since I first started asking the office building where I work to add disabled parking spots. They continue to refuse, and as I continue reporting them to the city, they continue coming to my managers at work to complain about me. I consider that to be very wrong. It is retaliatory action for my asking for accomodations and reporting them to Code Enforcement when they did not respond.

I spoke several times over email and in person with the building manager last year. I spoke with city code enforcement. I continue having to speak about it with people at my workplace, because of the repeated harassment from the building manager. Last year I also contacted a clinic manager at Palo Alto Medical Foundation, another tenant of the building, who I believe should be actively involved in protecting its patients and who I would still like to invite to a part of the solution.

I am a blogger. That means that some of the time, I’m a citizen journalist. When I get stuck, I can always go public. That’s what I’m doing. Private conversations on this issue have not gone well for me. People lie and stonewall, and I get put on the spot, I end up being the one under scrutiny. That is wrong. I am not the issue, and I am not the problem. I have been polite and helpful over the course of a year, in pointing out ways the building owners could deal with the issue, I made specific requests, sent links, explained tax breaks available that would help pay for the modifications.

The initial contact with the building managers last May resulted in this:

The building is able to offer much needed medical space to the community without opposition from the city; “currently”. We are not a medical building. As you know, the building is required to have a specified number of handicapped parking space in order to meet the standard set forth by the ADA. We have the required number of spaces and no plans currently for adding more.
(from Lauren from Harvard Investment)

Then a lot of messed up things happened. Frank from Harvard Investments came to speak to me in my office. He made many claims about his boss’s political friendships with city government, the good that he does for the community in being a landlord of medical office space. He said that if I kept it up, he would make sure nothing happened, he’d drag his feet and “nothing would happen for 10 years and it would just cause trouble for me in the meantime.” In a whirl of alternating threats and pleas for sympathy, Frank then made increasing claims of empathy because his grandmother “was in a wheelchair” and he was too during his teenage years. He went into quite an emotional story about his life as a teenager in a wheelchair, wistfully watching the other kids play ball and have fun; the emotional pain he suffered from as a result making him uniquely able to understand “my pain”. I did not believe him, and questioned the relevance of his stories and claims. My personal emotions are not the issue. The law, and what it does to help our city’s community, and — for me personally — my solidarity with other disabled people: those are the issues.

I refused to speak with Frank after that conversation. But I described it in full in an email to my co-worker.

Here is my first letter from last year, after some phone calls that didn’t seem to go anywhere. I sent it on May 15, 2008, to the Redwood City Code Enforcement head, Fereydoun Shehabi.

I am a wheelchair user, and I work in an office at 805 Veterans Blvd. in Redwood City. The building has quite a lot of traffic from people with disabilities and elderly, frail people in general, as it hosts large offices from Palo Alto Medical Foundation and other doctors. It has over 280 parking spaces that I counted, but only 3 of those spaces are marked blue as parking for disabled people.

Those spaces fill up quite often. They are not wide enough to allow me to park in the space next to another car and still get my car door open wide enough to pull my wheelchair out of the car, out of the side door, and pop the wheels onto it. The 60 inch between spots with striping, that should be there, is not there.

The building has a central lobby with two large and accessible entrances with automatic doors, one facing the east parking lot and one facing the west lot.

According to the ADA as I understand it, there should be at least 7 spots, evenly distributed around the accessible entrances, and one of those 7 spots should be van-accessible with a 90 inch wide area.

The three existing spots are on the east side of the building, the back entrance bordering on Main Street. Some of the spaces near this entrance are painted red and marked “reserved, private “. The red paint is fairly fresh and appears to be painted over blue paint, though it is somewhat difficult to tell. There is a very nice wide curb cut here.

At the front entrance on the west side of the building that faces Veterans, there is another excellent, wide, curb cut. But, all the spaces nearby are painted red (this time, obviously painted over blue) or gray, also clearly cracked and with blue paint underneath.

I have asked the property manager, Frank Ramirez, twice in writing and once in person to restripe the lot.

He refused to do so and said that the owner is friendly with the Redwood City planning commision. He claimed that it would be too expensive, and that he and the owner would fight any such restriping and delay it for “10 years”. I am asking him merely to add some extra spots by the west entrance. I see that the owner is afraid that he will have to tear up landscaping, sprinkler systems, trees, etc. in order to make a wide walkway in front of the spots. I hope that is not necessary and there is some middle ground between that complexity and expense, and doing nothing at all.

At first, Frank Ramirez stated that the building was in total compliance with the ADA. Later, in person, he admitted that he knew it was not, but that they had a special exception in a permit from the city.

I doubt this is true. It looks to me like the building owners had the minimal amount of disabled parking spaces in the past. And at some point, they painted them over for “private use” or as regular spaces.

Frank Ramirez also offered me a “private parking space” if I would stop asking them to comply with the ADA and if I would drop the issue.

I did not feel that is what is best for the community.

Frank also said that the medical clinic is good for the city and community. Yes – but not if someone in a walker gets run over in the parking lot because the owners and the city did not follow the ADA.

Attached is the permit for the building from 2005. The city planner on duty emailed it to me.

Best,

Liz

In the interim, Frank Ramirez in person told me that if I pursued the issue with the city or an ADA complaint, I would force the property owners to terminate their agreement with PAMF, and the City of Redwood City wants to have the PAMF medical clinic here to serve the community, and if I pushed things, I would drive out the clinic. Did I want, Frank asked, to be the person who took away health care for the disabled and elderly people of my community that I was trying to help? This argument by Frank hardened my resolve to continue to pursue the issue.

I wrote another round of letters in I think August or September but lost them in a hard drive crash.

A couple of months ago I opened the issue again with the city to ask why they hadn’t done anything and got this response:

I recall our last phone conversation regarding your complain. Following
your phone call I had our
senior inspector Jerry Schnell to come to the
site and verify the location of disabled parking stalls. He reported to
me that there are several disabled stalls scattered on the site and he
noticed there were two stalls near the main entrance and one in the rear
near exit door. I also called the manager with the phone number that you
provided to me and left a long message requesting for a response but to
no avail.

So the city did not properly inspect or respond to the complaint. Jerry Schnell did not report or take action on the obvious code violations in the parking lot. Nor did he look at the rest of the building; for example, in the lobby the fountain’s overhang over the walkway without any indication for a cane is a hazard for people who are visually impaired. Why didn’t the city take proper action? Was I being stonewalled, as Frank Ramirez suggested, because the city has a private and friendly agreement with the building owners, basically a golf buddy arrangement? Was Jerry Schnell just unable to do his job correctly? Where is his written assement and report of his inspection? Why didn’t Fereydoun Shehabi pursue the property owner’s failure to respond to his voicemail?

Why doesn’t my city have a clear procedure for its citizens to file such complaints and receive proper consideration and follow up?

I love my city and yet I am now in the position of possibly needing to sue them as well as the building owners, under the ADA.

Why hasn’t PAMF management, or any of the doctors who work there, ever noticed and done something about the disgraceful situation that means its own clients and patients can’t park safely?

I am not the problem in this equation. No one should bring me into it. No one should call my workplace, my company founders, or my manager. My workplace should not engage in a battle with their landlord or with me over this issue. The issue is not ME. And the issue does not involve them. The issue is, very clearly, that we have a law, the Americans with Disabilities Act. And we have agencies to enforce that law. The building owners are in knowing and active violation of that law. The city failed to enforce the law as they should have.

The building owner needs to fix the problem correctly, and can file for a tax break of up to $15,000 to cover the removal of barriers. There is nothing that says they have to bring everything in the building up to code in a perfect way. But they are required by law to do barrier removal that is readily achievable.

As I look over one of the two documents I have in my hands for this case other than emails, the Feb. 14, 2005 letter from the Planning Commission to Jeffery Teel from PAMF, I can see that the building owners and the city agreed that it is the building owners’ responsibility to make many other modifications to the property, such as an accessible and safe path from the city sidewalk to the building entrance. In other words, if you take the bus here, or get here from CalTrain, you can’t get to the building entrance without being in the large parking lot and driveways that open onto an extremely busy street. As I know well from trying to go to lunch with my co-workers who simply walk through the parking lot and over the landscaped hill, while I at far below safe eye level for drivers go the long way around through the parking lot. I tried that a couple of times. I saw how unsafe and scary it is. Now I get in my car and drive if I am going to go across the street for lunch. My point is that the building owners know they are supposed to do many things to be in ADA compliance and they have deliberately avoided doing those things to avoid expense despite their contractual agreement to do it.

Here is the report from the City Inspector from Febrary 12, 2009, when one was finally filed in response to my repeated requests for action:

Inadequate disabled access parking stalls.

I haven’t seen any response or action from the sending of this letter. But I am very happy to have a copy of it, and grateful that Fereydoun Shehabi sent it to the building manager. I would like to point out that he missed a few problems though.

I am not gearing up for a civil rights battle to demand my personal right to a safe parking spot. I am asking for my community members sake too. And actually I am doing it to demand my right to ask for a reasonable accommodation without the property manager repeatedly harassing me at my workplace by complaining about me to my bosses and throwing the problem back into my lap. More than my rights under the law about parking, I want my rights under the law to protect my employment. That includes protecting me from harassment and retaliatory actions.

I will call PAMF again tomorrow to ask their management and their clinic doctors and patients to join me in an ADA complaint. I will also ask everyone at my workplace to send in the ADA form which I will print out and bring for them. I don’t know if I’m going to fill out the form correctly without help from a civil rights lawyer, but I’m going to try. Acting individually, and asking nicely for people to obey a very clear law, and explaining all my reasons for doing so, has not worked. I conclude that only organized political action brought to bear will have any effect in this situation.

If you are in a similar situation, I recommend that you organize political action rather than sending letters every couple of months and trusting that something would happen. Because unfortunately, other people can be greedy and corrupt even where the law in theory protects us.

And if you are a property owner, I recommend that you listen to people who ask for reasonable and readily achievable accommodations, and negotiate in good faith to improve your property.

Why is airline travel so brutal for disabled people?

March 27, 2009 Liz

Here’s a little bit about my day today and then some thoughts on airports and disability. But my short answer to the question in my title is that U.S. airlines do not even try to comply with the U.S. 1986 ACAA or Air Carrier Access Act, likely because the ACAA is not enforced.

Anyway, my day. I crutched all over the place today for the first time in weeks maybe a couple of months. WHEW. I am tired and exhausted and my leg won’t swing forward all the way now. It was a great day though. I worked from bed all morning, dropped Oblomovka off at work and then worked for a few hours from a really nice open air cafe and ran into Jeremy and Bryan.

Then I went to this awesome ping pong club full of gleeful amazing middle school kids having complex after-school chaos with ramen noodle cups, candy bars, wearing gym clothes and pajama pants and flirting and yelling at each other. If I taught or worked with kids again that is my favorite age – when they are still kid-like and especially squirrelly but almost grown up.

On the drive there I was feeling grumpy and gloomy, like, “ugh, the crowded, trafficky, tourist part of town, hilly, I won’t be able to park”. I worried that I had been stupid, I should have tried to get Oblomovka to go with me, and I thought of back up plans in case I was not able to get into the store (calling their number, asking them to bring the stuff out to me and I could just hand them the money; stopping a random stranger and giving them the money and asking them to get it for me.) The table tennis club turned out to be a tiny and beautiful shop on a flat bit of the street with a semi-legal parking spot right in front, so I crutched into it instead of getting the wheelchair out of the car. The drive back was trafficky and my leg hurt like hell. I played my obnoxious punk rock music and my Gangstagrass CD very loud and enjoyed the weather and the free feeling of driving where I pleased.

I then crutched into the EFF which was probably too much for me and then into a store and another store — feeling extremely tough. I screamed “Fuck off!” at a car which did not stop rolling towards me as I slowly crossed the street at a crosswalk on crutches with a child hanging off my arm. If the kid had not been with me I might have beat that woman’s SUV’s headlights in with a crutch just to make a point. Stop your cars, people, don’t just keep coming, tapping the brakes to “totally pause” is not enough. It was terrifying.

Home and then we all made party decorations. I have now become one with a beer and a vicodin.

I just got back from a trip and had some more negative airport experiences to add to all the others. Airports are some of the most stressful places for me to be in. They are unusually full of people trying to push me around, take my chair from me, I become an obstacle, a problem, a worry, certainly not a person. A person pushing a stroller poses about the same level of mechanical assistance and possible lack of grace in dealing with the security and airline boarding and yet a stroller-pusher is not pounced on like a soul-sucking inconvenience in their day or a dangerous animal in need of being taken out by a tranquilizer dart, the way that airport and airline people treat me when I’m in a wheelchair.

Tonight I read about Dave Hingsberger’s experience with an airport guard telling him that he didn’t exist.

He looked at me, annoyed and said, “Luggage can’t be left unattended.”

“I AM attending it,” I said incredulous.

“You don’t understand, SOME BODY needs to be in possession of the luggage,” he said and I didn’t get his implication, not yet, I was still too startled.

“I am in possession of this luggage, it is MINE,” my voice is rising.

He looks at me with exaggerated patience, “SOME BODY (long pause) needs to be attending the luggage.”

I got it then, I wasn’t SOME BODY, “Are you suggesting that I can’t supervise my own luggage because I’m in a wheelchair?”

“You need to settle down, sir.”

“What are you going to TAZER me? You are stealing my luggage,” I’m almost screaming now.

In the comments there is some support and then an influx of trolling and stupid comments. Even some of the “helpful” comments struck me as quite ignorant, for example the one that suggests that the “slightest hint of the ADA” makes people fall all over themselves to get in compliance and be helpful. I have never seen THAT to be true. Maybe in some alternate universe, asking for better access or pointing out someone’s insensitivity, rudeness, wrong-headedness regarding access and disability, doesn’t result in a bunch of petty officials becoming hostile. People become hostile if I don’t kiss their asses for offering me help that I don’t need and thus refuse and they certainly get angry and show it if I offer feedback on improving access. Show me some ADA cases that resulted in anything without actual political action. Who seriously thinks that ANYONE… especially anything to do with air transport… lifts a finger to change things because they might get sued? Wake up, folks! The idea of lawsuits does not magically fix all sociopolitical problems and it reeks of privilege and ignorance to go “Oh, well just SUE THEM”… with what energy, time, and resources? With what lawyer who’s going to take that case?

While reading the comments thread I realized Laura Hershey has a blog! I only knew about her old web site of archived articles and columns! I am very excited to read back through her blog posts! It’s like the most beautiful present! Y’all know how much I love airports, right? Laura wrote a poem about her own feelings about airports. I’m not alone. I also read andabusers’ posts on her airport experiences. Did you know that British Airways makes disabled people sit next to the window, in case there’s an emergency, so that they won’t get in the way of other passengers? NICE. I’m going to be writing an interesting letter to BA. What do you think that will do? Magic lawsuit fairies will sprinkle their pixie dust and BA will re-educate all its employees? At best it will result in a form letter, at worst I earn a flag on some list for being an annoying, difficult airline passenger.

Part of my theory about airports and airlines is that they tend to see travellers like they are all possibly dangerous animals in need of control and a disabled person is likely to be not only personally inconvenient to them as they try to do their job AND because they are not invisible in some hospital or institution and are out in the world, are likely to be uppity cripples who are about to cause some trouble. So they treat us with special rudeness, they single us out as targets of their anger, as people they CAN push around and not suffer any consequences for doing so because the disabled person is ASSUMED by anyone else who comes onto a bad scene to be the obstacle and the difficulty.

I read a great quote tonight from Wheelchair Dancer:

Pain is disabling, but disability is more than than hurt, the impairment, and more even than the attempts to overcome the hurt. Dare I go so far as to say — *disability* is the wind in your hair, the sun on your back, the fuck y
ou, the acceptance, the culture, the art, the humour, the rebellion, the work, the pleasure, and, yes, the living in pain; this is living unbounded.

In search of ping pong balls

March 27, 2009 Liz

The two gross of ping pong balls that I ordered online aren’t here in time to spray paint them black to use as cannonballs for the party. So I went off this afternoon in search of the cheapest ping pong balls in bulk in San Francisco. It ended up being super awesome.

First I found this place online, AMDT Club. As I drove over to it I couldn’t quite picture where it was, somewhere on Lombard St. so either in North Beach or Chinatown or in between. But on the way there I ended up on top of a very steep hill, looking out over all of San Francisco, Coit Tower, and the Golden Gate Bridge. The shop was on Lombard, but on the part of it that feels like a quiet residential street, across from a park and public pool. As I pulled up in front of the store I realized it was a neighborhood center for kids. About 50 middle school kids mobbed the shop on their way home from school, buying trading cards, sodas and candy, and also getting ramen noodle cups and heating them up to eat in the front part of the store. The back of the store was the table tennis club. Kids pay $100 a year to be able to come in and play, and lessons cost extra. They also have home work tutoring. On their site you can see the kids in team uniforms.

I stood around the shop waiting to buy my 144 ping pong balls (the cheapest kind) appreciating the spirit of the shop owner and the people who run the ping pong club for kids, not just giving lessons but really making a community center where kids want to come and hang out. I feel like so many people don’t like the chaotic and lively nature of middle school and high school age kids, but here was a place where they were welcome and appreciated. How beautiful!

Access Sex: panel at SexTech conference

March 26, 2009 Liz

The Access Sex panel on sex education, sexual health, and people with disabilities was just beautiful.

Panelists: Cory Silverberg (http://sexuality.about.com/mbiopage.htm), Bethany Stevens (Morehouse School of Medicine), Liz Henry (BlogHer), Jen Cole (GimpGirl)

Cory Silverberg opened by asking some questions about who was in the audience. Our audience was full of public health workers and health/sex educators and providers.

Then Cory asked what people want from the panel. What do they need to know?
A: How to deal with school, staff, parents. They don’t think the kids are at risk. How to get education across? Special ed classes also have to educate to multiple levels at once.

We didn’t get a lot of other answers, but I felt like this was a great trick of moderation, a good way to start the panel; it helped me feel connected with the people we were speaking to.

Bethany, Jen, and I each talked for about 10 minutes each. Bethany spoke on models of disability, medical vs. sociopolitical. I spoke about disability and sex. Jen then talked about GimpGirl, a successful, long-lived online community for women with disabilities. We spent the rest of the hour and a half on audience questions and discussions. It was a very lively discussion!

We mentioned the guide for health care providers for disabled women a lot, and here is the link to it: Table Manners and Beyond: The Gynecological Exam for Women with Developmental Disabilities and Other Functional Limitations. Please read it!

Bethany’s lightning talk on disability politics

Bethany introduced herself. “My CV is big and throbbing. I released myself from the shackles of Power Point and recommend it to you.” Going to talk about different models of disability. Also, with some personal narrative, personal examples of what I mean about different theories. Speaking on an embodied level.

There are two models I want to outline. First, the medical model of disability. I recommend you move away from that. Don’t use it in your work. It posits that the problem of disability is on the individual rather than on society. Rather than addressing structural issues of oppression, architectural or social, look at as a social issue with social and political solutions. Medical model puts an onus on individual to normalize their bodies. It puts us in a constricting box of normalcy. The medical model leads us away from civil rights ideology. By pushing the idea of normalcy we create more problems than solutions.

Second, the social model – I want to create a model of the world I want to live in. Michael Oliver in Britain. The idea of impairment is separate from the idea of disability. Separating a functional issue or condition from the social ramifications of that imapirment. For example I have osteogenesis imperfecta or brittle bones. The embodiment of that is being deemed subhuman. That may seem like a dramatic statement, but it is true. We are treated inhumanely. Cory suggests we are the most under-served population for sexual health, education and rights.

Think about the social meanings of disability.

I encourage you in your work to denounce and deconstruct these concepts. It is the first step in creating this revolution of embodiment. By doing this in your work it is liberatory not just for people with disabilities but for all other people. 80% of people in the U.S. will deal with disability in their lives. We have increasing elderly populations. Create that revolution of consciousness starting with young people, teach them that embodiment exists on a spectrum. There is a mental health problem of losing ability.

1) We’re often treated as children. I am constantly, people bend down in my face and use baby talk, sing song voice, the disabled people in the crowd here are nodding, it’s egregious. I’m a lawyer, shut up and treat me like a human. As I’m aging and becoming more mature, I realize that’s maybe not the best response. This issue is a bad one.

2) We are perceived as dependent, always needing help, we’re helpless. These things intertwine. Example, when I’m sitting anywhere, recently I was sitting texting someone in front of a building and two people in a row stopped to ask if I needed help. I didn’t look helpless or perplexed non-verbally or make any eye contact. But, of course on the other hand, there is something beautiful about that we sometimes need help, we are interdependent. There is beauty in helping each other.

3) Sexuality: it is very pertinent. Pivotal to my life path. Disability and sex focus. The common notion that we are asexual and undesirable. This is a pervasive assumption in all aspects of culture. It is very politically disempowering. We need to be allies with queer people and people of color. This is a tool of oppression, sexuality; stigamatizing our sexuality is a form of dehumanization. It means we are regarded as nonhumans. This legitimizes all sorts of abuse, exclusion, and exploitation. PWD have at least a 2 times higher rate of experiencing sexual abuse than the non-disabled. For example many are abused by caregivers. You might have a choice. Have a care giver? Get a bath plus sexual abuse? Or, not have care, and turn our abuser in? The stereotype of asexuality exists. Sexual silence. It’s about anxiety-producing issues; disability and sexuality are both anxiety producing. Exclusion from media representation. Not including PWD in teaching materials. Public health intervention plans don’t include us. Think about culture beyond race and ethnicity. Beyond the glbtq axis.

Interweaving some of my narrative. As a young person I was born this way, nowhere was disability mentioned in any classroom space at all. No matter the subject. Maybe in the Holocaust’s history but not really. Certainly not in sex ed. The stereotype was that we were asexual and undesirable. I was using dialup internet so I was trying to find info on sexuality on the internet, when I was 16 or so. There is not a lot of information. Dr. Tepper, Sexual health network is inclusive, has disability info online. Practical methods. Cory has a sex shop in Canada: Come as you are, that has a disability section. How do you make sex toys accessible. Just mentioning this counters the stereotypes. Gaps have been filled a little bit. Have information about specifically disability and sex, but mention disability in everything – in basic sex ed.

Cory – There are sex toys that strap on to you and you don’t have to use your hands. We train our people to say, “This is so you don’t have to use your hands, if you don’t want to, or for people who can’t hold the sex toy.” If you say that to a non disabled customer they say, “What do you mean?” and it becomes an educational moment with just those three words “or who can’t”.

That’s a cheap revolution!

Three ideas how to include disabilities in your work. Have it represented, outreach to young people. Figure out where they are. Are they getting sex ed? What are their needs? Talk to stakeholders. We are providing you that space right now, you can ask us those questions. You can tailor your message in a way that’s competent and not offensive. In public health you can’t just tweak your program a tiny bit and not alienate the culture you’re trying to serve. As much as I hate the word “normal”, make people more comfortable with disability, make it normalized. Put in a wheelchair in your visu
al images.

Liz’s talk on sex, disability, and sex ed
Then, I gave my bit of the talk, which is basically outlined in these notes. Some bits of my talk are missing because I improvised and told stories. (“Whiskey, Vicodin, and hold me when I cry” was the money quote…) Some bits in my outline I didn’t go into in the talk.

Then, Jen Cole gave her part of the talk and described GimpGirl. She worked from a written speech which maybe she’ll put up on the site and if so, I’ll link to it. Here’s my notes on what she said, a bit shorter than my notes on Bethany’s talk.

Jen’s talk on GimpGirl

– We were young queer women with disabilities and started our group online 11 years ago. We met through the “do it” program at U of Washington, and all felt isolated. We’re not trained professionals. We’re just women with disabilities who care about our communities. No degrees or certifications. We make our community what we want it.

GimpGirl has meetings weekly, about a hodgepodge of topics: political advocacy, support group, staff meeting. We all come up with projects and start going on them.

– We generally have a smart sassy geeky spirit in common.

– We started on Serenity MOO, kind of like a MUD. We had email lists. Moved to LJ in 2003. It is easier to maintain than mailing lists. Young women, queer women, art and culture. We branched out into Second life, Facebook, and Twitter in 2008.

– 850 people, 265 members on LJ. From all over the world. This last year, we were donated a fourth of a SIM on 2nd life. 3d embodiment. Connecting people with disabilities to 2nd life. Second Life brought a huge wave of growth to our community. It brought opportunities we didn’t know we were going to go after. Started to bring in financial support. Professionals in a myriad of different fields wanted to be part of our community. Women, disability communities hooked up with us.

– Recently we tried bringing in partners of PWD to talk with us about sexuality and whatever comes up in relationships.

– Problem with Second life, it’s not very accessible to a large population. Some people can’t access, older computers, limited finances, blind, visual processing issues, we also have an IRC channel with a live relay that goes back and forth between 2nd life and IRC, so people with visual impairments can participate.

– Examples of what our community is about. Partners meeting. The next day the girls were like “how did it go!” and they were just super curious. We realized that they wanted to do a singles meeting about sexuality. That was cool to me as an organizer to see women do that.

– Our community isn’t about sexuality specifically. For 11 years, it comes up a lot in discussion and story telling. We have a lot of Q and A within our own community.

– specific and general information.

– accessible gynecologist list. Who people think is good and bad. Are their offices accessible? What parts are accessible and what parts aren’t? Are they treated like human beings? Can they get on the exam tables? This info is on our wiki at gimpgirl.com.

We then went into audience comments and discussion.

q: panel idea great. I work for a hotline program in Massachusetts, sexual health, mariatalks.com All info thru lenses of characters. Accurate information. How can we make sure community is well represented in all our characters? I was a PCA for a while, the woman I worked for had awful experience with exams, being lifted up, put on a table. ER with capabilites? How do we know where to send someone?

Bethany – first question. Going to the stakeholders. Reading books is great, you learn about the sexual politics of disability. Tom Shakespeare et al. But talking to people is good. It is your responsibility to be culturally competent in your area. Find a group. So it’s not based on stereotypes and uses contemporary language. That’s inclusive. For example, we’ve moved away from the word “handicapped”, so it would be a bad idea to use that word.

(Dr. Sandra Welder. Peg Nosick from Texas. Curriculum for health providers. CROWD: Center for Research on Women with Disabilities. )

Second life and IRC questions.

Information on safer sex practices for people with disabilities?

– not a lot out there. sexy harm reduction. Put on a condom with your mouth.
– Liz: this is a good subject for brainstorming.
– There is good information about safer sex for people with cognitive disabilities.

Resources on developmentally disabled.
Cory – there’s lots of stuff. This is the one area that has a ton of stuff out there.
(I agree, it was a topic easy to find material by googling!)
Terri Couwenhoven. Downs Syndrome is in the title of the book. Teaching Children with Downs Syndrome About Their Bodies, Boundaries, And Sexuality: A Guide For Parents And Professionals.)

The Ultimate Guide to Sex and Disability. Excellent guide! Cory started that project.

Technology. As a blogger – Is the blog medium effective for getting across a message?
Liz: Yes! Twitter and Facebook also. Blogs mean you can speak at length, and the information is persistent. And it is current. Personal voice. Story telling is effective. Age brackets – MySpace/Facebook, LJ, etc Look at the disability blog carnivals, and Ouch (BBC’s disability site and group blog).

Who’s talking.com google different topics.

50% of population with disabilities doesn’t have access to sex ed.

Title 10 clinics in California. We invested money into that, into access, and there still is not a large number of women being served. Where do we find women who need the services? how can I help facilitate the connection? We want women with disabilities to be on our advisory boards or boards of directors (but can’t find any)

A: Mailing lists. Blogs. Contact existing organizations. There are a lot. (Independent living centers too but I forgot to say that.)

A: Bethany adds (again) not to expect people with disabilities to work for you for free and be grateful for the opportunity.

Competencies – tragic stories, clinic with restroom wheelchair access, the contractor build a hallway too narrow to get to it.

People who might be on the board? The bay area is one of largest populations. So you should be able to find someone.
– berkeley disabled group. has a mailing list.
– D-WILD
– Ed Roberts Campus groups
– Etc!!

Bethany – Working at Morehouse school of medicine. General advice to read about it first before they ask the questions.

sexualhealth.com

Guy in hat. 2nd year medical student at ucsd in reproductive health. san diego. noticed that youth grow up, teen years, development and growing. It is a huge transition and growing. Doctors, children transition from seeing a pediatrician to adult medicine. Pediatricians are family focused. Adult medicine focuses on disease and a person. That change is really important, causes stress on a patient.

Bethany mentions Dr. mirian kaufman. transition care, sexuality and disability.

jen – this was what our non profit was about, transition between your family and family helping with things and transitioning to adulthood. you’re thrust out there into nothing. not a lot of support for how to transition. how to move out on your own? attendant care a
nd health care.

We talk about people’s fear of giving PWD responsibility over their own health care.

Parents, caregivers, that want to protect that person with disability from becoming an adult, from experiencing their sexuality. it’s a huge issue.

The guy in the hat continues talking a couple of times about transition. Introduce physician early in teenage years. He is kind of repeating himself.

Bethany: This question as it keeps going is irritating to me. We continue to be viewed by that medical lens. Sure it’s important. But doctors do not dominate my life. We all deal with a transition plan. There should be services that help us because we do have to engage with the medical profession. However, that’s the one field where i’m NOT excluded! They want me there! Everywhere else I need some support! Medical expertise is just one facet.

Q: Physical accessiblity. I never see anyone who is disabled. Emotionally accessible. And, how can it be a safe space?

A: think of the glbt community , queer youth, tendency that we bring youth into our center, but we need to go outside our center to where they are, we need to bring community to them.

A: something like putting up a rainbow, disabled symbol?

A: In trans health – service providers often think they have never seen a trans person. But they probably have.

A: In questionnaires at our clinic, we haven’t had anyone who identifies with that population, as disabled.

aud – I have disability but can hide it. If I’m asked I don’t check that box. I don’t want to be seen through that lens necessarily and set off whatever will happen when I check that box.

aud: – thanks for talking about desire and sexuality as positive rather than something dangerous to be controlled. A lot of the panels this conference have been sex negative.

Other guy – curious about second life. Embodiment. How can you be embodied? Do you have to be able bodied?

A: Yes and no. The range of body types is not that varied. But people built wheelchairs and animations and other mods. If you go around in the mainstream world of 2nd life people will ask you a lot of questions about why you are in a wheelchair and why you would choose to represent yourself that way. They can be harassing or hostile.

Bethany: Everybody can fuck! It doesn’t matter what your body can do. We can have sex in all sorts of fun ways. Sex machines! Assistive devices! Expand the idea of pleasure and sexuality.

Now, about being inspirational! I should inspire you to have sex. If I can do it? You can do it!

(End of Panel)

I would like to add that despite our comments during the panel that you might want to pay people with disabilities to consult rather than expecting them to jump at the opportunity to work for you for free, three people approached me and asked me to do free work after this panel. They mean well and I respect that they want to be inclusive. I was not harsh about this in person, but actually, I feel a bit harsh on the subject. Some lady making like 90K a year working in public health? If her institute can’t afford to pay a consultant she can pay me or someone else with disabilities out of her own pocket to help her learn to do her job. I have a full time job and a complicated family life and I’m editing a book and, like, 6 blogs. It is a bit like, when women point out that technical conferences don’t have child care and then the conference organizers ask them to do the child care. Hello, if I’m doing the child care (for free no less) I won’t be participating in the technical conference will I? Pay for it, folks. Don’t exploit people because to you they look like the most exploitable people around.

Thanks to Cory Silverberg and Jen Cole for inviting me onto this panel! I confess I was sort of suspicious of Cory at first but he turned out more and more awesome over email and then incredibly awesome in person, I was sorry not to get to spend more time with him (and Bethany who I now adore). Jen and her partner and I went out to dinner and had a nice time; it was great to finally meet Jen who I have known online for a couple of years. I have to say also, SexTech was not a huge conference, maybe 300 to 500 people? But at this conference, in one afternoon, I saw and spoke with at least 8 people who were wheelchair users. At SXSW which was something like 5,000 or maybe way more people, there were 4 people in wheelchairs (more than I saw last time, and it felt amazing to me, but look what Sex Tech can do – I would like to challenge SXSWi to increase its outreach and invite more PWD to its conference.)