Hooray vacation! Goodbye shingles

I’m in Akumal (again) and it’s amazing! Last night the kids and I were lying in shallow water looking up at the Milky Way! I saw Cygnus and a shooting star (Thanks Perseids! Perfect timing!). I can scooter down a short walkway and then walk onto the narrow beach. Perfect for me and very easy for me to get to the water.

There are sea kayaks here! I took one out experimentally. Maybe I can go further as I get stronger and rest more. The kids went snorkelling a little with another family who have younger children.

I have seen some yellow finch-like birds, a ton of grackles, constant Magnificent Frigatebirds overhead, and a woodpecker of some sort. Spending a lot of time in lounge chairs with my binoculars.

beach view in akumalDigression time!

The first week of July I got shingles. It was pretty intense the first two weeks. I barely remember it. My mom came to visit and cooked us amazing food. I had a house call doctor from ERDirect.com. I recommend this if you suddenly fall ill on a holiday weekend. This guy came out within an hour, prescribed me antivirals and steroids, and saved me hours of pain that I would otherwise have had to spend in the ER. The shingles covered most of the left side of my torso (in multiple dermatomes). It was difficult to have any clothing or anything touch that part of my body for the first couple of weeks. Lots of vicodin. I was off work for 3 weeks.

I had that bus hearing in the middle (in week 3). That was kind of wild. I was barely coherent (for me). Did it, somehow! My sister and my son came with me and there were a lot of TV people from local channels.

The things that ended up helping the most were high doses of gabapentin, and ice packs. I feel like the prednisone was also kind of good. At least, it helped me walk better (my knees and ankles were in less pain than usual.) The gabapentin was scary though, in that it made me dizzy and unsteady feeling. It also made my vision blur. I had to increase the font on the computer about 3 or 4 times to see words clearly. But, it still worked better for the shingles pain. It didn’t get me to “pain free” by any means but to a tolerable situation. I also recommend listening to music if you ever end up in severe pain. Albums that kind of hang together, old school style hip hop where you have to carefully listen to get all the words and there is plenty to think about, jazz, opera, and some classical music (baroque – Bach!!) were best. I must have listened to the Mingus “Ah-Um” album at least 3 times a day for a while.

One thing that was unexpectedly difficult was going in a car. I went in taxis or got rides and I could hardly bear to lean back into the seat of the car. I had to hold the seat belt off myself. No way could it touch my body. Horrors.

I also got pain down my left arm (which didn’t have the rash) and in the area on my front and back below the rash but above my hip. It was scary to have my arm affected. It is getting much better. Now down to a low “buzz” feeling.

It was a relief that people seemed to understand the severe pain level, and that life was more difficult for me because I already have pain and some impairments. My son got a sudden crash course that I am calling “Chore Camp” in weeks 2 and 3 of this ordeal.

I recommend you not get shingles, ever.

Luckily I felt pretty decent by last week. I dealt with a sudden intense 2 days of work working 14 hours last Thursday and doing a pretty good job. Not perfect but decent. I did normal things like go out to get groceries. This is so comforting after being ill. The plane ride was OK. Danny got a seat upgrade (he travels a lot and so gets all sorts of perks) and gave me his seat in first class while he sat with the kids in the back of the plane. I didn’t need any painkillers until we were off the plane. Then I kind of gave in and had half a vicodin.

Painkiller free today, still tapering down gabapentin. I am down to 900 mg total per day. Things are so much better. Soon I’ll be completely off of this drug.

My arm is better enough that I kayaked for maybe 10 minutes. Halfway to the reef. I have also walked around a fair bit and have gone “out” to the little mini mart.

Beach paradise, nice breeze, birds flying around, lizards and hermit crabs crawling over everything, hibiscuses and coconut trees, and the sound of the gentle waves in this protected bay!

I’m hoping to swim short distances several times a day, and also kayak!

And I am hoping to find someone willing to be my tutor in (Yucatec) Mayan. I have made a list of words and phrases, and some flash cards. I have also read a fair amount of local history at this point. Very interesting.

Last visit, we were only in Akumal for two and a half days. I explored around the point where the cannons are, and looked longingly at the tide pools (not walking well enough to go to them), found the Lol-Ha restaurant (fabulous) and visited the minimart (Super Chomak) about twice a day. This visit I’d like to explore further — but may instead focus on swimming and resting while the kids explore independently.

There is more seaweed on the beach this visit and the “visibility” under water near the shore is bad, which many people on the beach complain about! I have a scheme to practice getting into the kayak from the water. Not sure that is possible for me. But if it is then I will kayak out to near the reef and then jump in to snorkel! I can kayak a hundred times better than I can walk. Like a sturdy voyageur! But I will need to work up to it.

Story of a formal complaint process about riding the bus while disabled

A bad incident on the bus in June led me to file a formal complaint. I described the incident as it unfolded on Twitter, and then gathered the tweets about it here on Storify: Screaming wheelchair-hating SF MUNI bus driver. I routinely go through moments where bus drivers resist the idea of letting me on the bus, or just pass me up, or act a little rude or horrible. In those cases, I have sometimes filed a complaint, and sometimes not, and let it go at that. Life isn’t perfect, neither are people, and I don’t expect my encounters with everyone to be ideal. But this was over the top. Here is an example of how to file a complaint about San Francisco bus service. My goal in explaining this at length, and in filing a bus complaint in the first place, is to improve bus and public transit service for disabled people in the SF Bay Area.

Bus stop sign for 14 49

First of all, I twittered the incident as it happened. This gave me a written, public record of my memory of the incident, while it was fresh in my mind. It gives me the date and time stamps of when I got on and off the bus, as well. Afterwards I collected the tweets on Storify because I wanted to be able to refer to them later. For a person without a smart phone this could be done with pen and paper.

Bus interior photo june2

Second, I noted the time, bus number, and driver’s badge number. Noted on paper, as I carry a small notebook and a pen in my vest pocket from long habit.

Third, I quickly filed a complaint through the SFMTA feedback form on the web. You can also do this by calling 311. You have to choose a complaint category. The categories are a bit confusing. I believe I filed this as “Discourteous Driver”. I asked for an in-person hearing, and checked the box that said it is an ADA complaint. I got an email response within a few days from SFMTA, saying that they got my complaint and assigning it a reference number. (There may have also been a snail mail letter.) I then got a email asking me to call a local number to schedule the in-person hearing.

Fourth, I emailed the local Independent Living Center, the ILRCSF and asked to talk with their lawyer, thinking maybe they could explain what happens at, and after, these hearings. The center staff were very helpful and nice, and met with me to chat about the incident. It is possible to ask their lawyer to go with you to this kind of hearing.

Fifth, I called to schedule the hearing with SFMTA. As the hearing date approached, I had to reschedule it because of illness. You are only allowed to reschedule once. I have to mention the person I talked to on the phone was super nice and helpful. I got letters from her almost immediately, confirming the hearing time and date, with clear instructions how to get to the hearing location. That email’s contents were in a Word document so likely the staff has a template for responding.

Sixth, I looked at the Americans with Disabilities Act, wondering if I should file a complaint through ada.gov. My conclusion was: No. That is more for a group complaint about systemic and sustained discrimination, that a local government doesn’t respond to. What I’m describing here is one specific incident. If there were such a complaint it would be under Title II of the ADA. Anyway, I am a busy person and this is already taken up far too much of my time and energy.

Seventh, I filed a Freedom of Information Act (FOIA) request for the video and audio from the bus’s built in surveillance system, since the bus videos are public record. On the web, I found clear instructions on how to file a FOIA request to the SFMTA. I used this template example of a FOIA request in California for my letter. I was able to file this request by email, and regular mail was an option too. I got a response very quickly, I think the same day, by email. Just yesterday, I got two DVDs with video and audio clips. They played on a Windows machine, with the viewing software built into the DVD, showing 8 or 9 different camera angles in different parts of the bus, with one audio track.

I looked over the videos and made a full transcript of the interactions between me and the bus driver.

Here’s the video. It’s a little over 4 minutes long, and includes 3 segments edited together. When I switched to footage from a different bus camera, I backed up the video a little bit, so some segments repeat for a few seconds from the different angle, for continuity. (edited to add, I realized last night that the 3rd segment was missing, so I added it as a separate video below)

First the driver refuses to let me on. He then pulls the bus up to me, and we argue further. His arguments included, that he isn’t allowed to let people on except exactly at the stop; that he has inspectors watching him; then, that there isn’t room. He then lets the ramp down. I get on, he yells some more, then he gets up again to tell me I can’t sit in the bus seat but must sit in my scooter. I refuse. The bus then moves on and the video jumps to when I get off the bus, the last person to get off near the end of the line downtown. I ask the driver for his badge number, he gives it, then he yells at me some more.

The complaint hearing is this Tuesday.

Interesting information from the hearing confirmation:

Hearings last approximately 30 minutes and include a professional neutral hearing officer, the transit operator, and customer. After the hearing officer reads the complaint, the customer and the operator (or his/her union representative) are offered opportunities to comment and ask follow-up questions. Afterward, the hearing officer evaluates the evidence, and a written decision is forwarded to the customer within seven days.

Please note that your attendance at the hearing is required in order for the hearing officer to make a decision regarding your complaint. Please bring photo identification (such as a Driver’s License, State ID, or Passport) so we may confirm your identity.

I wonder how many policies or public transit operator the driver broke in this incident. From watching the video, here are some possibilities:

1. The driver does not pull up to let me board. I was clearly indicating I wanted to get on the bus. In the best practices I’m familiar with, bus drivers pull up just beyond a bus shelter, to let a wheelchair or walker user board, asking other people to board at the back of the bus. This is efficient and fast.

You can see in this photo still from the video, from 8:28:11am, that there was room for a person in a wheelchair to board and ride the bus. There are empty seats. No one is standing in the front section of the bus. It is very clear.

Bus interior with plenty of room room june2

2. The driver refuses to pull up to let me on.

3. I ask him again to let me on the bus. He refuses and tells me to catch the next bus, several times.

4. The bus driver then moves the bus up about 10 feet, stops, and gets out of the bus, to stand over me and yell at me. Surely this is not supposed to happen at all.

5. He tells me that there inspectors watching. It’s unclear whether that’s his excuse not to let me on, or whether he’s using them as a kind of threat. He tells me he’s going to get them to deal with me.

6. The driver then tells me the bus is too crowded. It isn’t. Also, as time went by during our argument, more people boarded.

7. The driver then tells me that I should not be demanding to get on the bus.
He continues yelling as I board.

8. After I was seated, the driver got up to stand over me and yell some more. He claims that I have to sit on my scooter and can’t sit in a bus seat. This is not true.

9. The driver then complains to another passenger that my wheelchair is blocking other people. It was not.

Here is a photo of my scooter on a bus in exactly the configuration I had it on the #14 on June 2.

Scooter on bus parked

10. As I exit the bus, the driver insults me by saying that disabled people complain all the time and “that’s how y’all live”. and calls my wheelchair a stroller.

11. The driver tells me “be there tomorrow” meaning, I think, be at the stop on his line and see what he will do. I assumed that meant he will not let me on the bus next time or will be hostile in some other way.

So much to unpack.

It is a little sad that no one else on the bus said or did anything to help me. I can understand that they may not have been paying attention until things went badly. By that time, who knew what was going on, and who was at fault. And getting involved might make things worse or mean more delay. Everyone wanted to just move on! However, I would have spoken up as a passenger to say that the driver should have let me on the bus and that it wasn’t right to yell in my face the way he did. I encourage anyone reading to think it over and do what is right.

Sometimes, it is other passengers who start to yell at me out of their perception that I am a parasite on society, that I shouldn’t be allowed on the bus, or out in public, and so on. This happens once in a while, and I will explain to any such person at length about the law, the 504 sit ins, how people blocked the buses in Denver, and any other piece of defense of myself and all of us that I can think of. It is certainly upsetting and enraging. I try to keep my cool.

Liz on travelscoot with sealions statue

During this incident, I did not outright lose my temper, swear, or anything like that. I stated my rights and told the driver there was room on the bus and room to put the lift down. Repeatedly. Frankly I was mad as a hornet that this driver was probably going to pass me up for no reason. And likely as not, so would the next one. My power is not in my body. It is in my mind and voice. You can see that from how I never shut up and kept telling the driver to let me on.

The time I found the most upsetting was when I was on the lift, and the driver got up to stand over me, yelling that I should stop talking. I stopped talking. I finally felt intimidated. I wanted to get to work. I wanted the confrontation to end. Fine. I was on the bus. I did not feel good about shutting up when told to. However, it seemed practical. So it was shocking that the driver then came again to yell at me and stand over me. It seemed best not to argue, but to passively resist. I decided I would not get off that bus till I was at my stop and if he called the police to throw me off, he would be very much in the wrong. Luckily, that did not happen. The driver finally realized he should leave me be, and move on and do his job.

My memory and the tweets mostly match up with the video. I don’t hear the part I remember where I said, it is the law you have to let me on. I think it’s in an inaudible part, but I know I said it. That’s what the driver responded to when he says “That’s a rule, too”. I did not remember that he got out of the bus to stand over me on the sidewalk and yell. Wild. I still don’t. But there it is in the video. Also, I described the driver as “screaming”. After seeing the video I would not say that. I’d call it “yelling” instead. We both had to yell to be heard. As I exited I thought that he had said something like, “Be here tomorrow and see what happens.” But in the video it’s clear he said “Be here tomorrow… ” twice, and then closed the bus door. So I was extrapolating the end of the sentence, but that’s not actually what he said. Otherwise my memory is pretty accurate.

So, I did eventually get on the bus, got off the bus at my stop, and got to work on time for my meeting with my boss. Great. But….

I believe that the driver was discriminating against me because of my disability.

I don’t look forward to confronting this man in a hearing at his workplace. I also don’t like the idea I will be riding a bus with him any time in the future, but that seems likely to happen. Hopefully if it does, we will not need to interact beyond the minimum of politeness.

Bus drivers work hard and have to put up with a lot of bad behavior from the public. Clearly the 14 (and 49!) are no picnic to drive. I can see that I was annoying to the driver with my persistence and my insisting that he let me on the bus. However, he should have let me on in the first place. I would have paid my fare and thanked him, asked for my stop, and we both would have had a fine day. For the middle of the ride, I observed the driver be friendly and polite, chatting with all the other riders as if trying to prove to himself that he was a nice person. Or, perhaps to show to the other riders that he was “the good one” and that my behavior was bad, in other words, to try and show me up. Maybe both at once. The point is, I could see he knows how to do his job well.

My expectations from this complaint are that SFMTA will take the complaint seriously. I hope they will appropriately train the driver to interact with wheelchair users and how to let them onto the bus in a normal and efficient way. I believe they should also look at their training process since it is not uncommon for me that drivers refuse to let me on the bus, or simply pass me up without stopping. Passing me and other wheelchair users up is particularly a problem on the MUNI train level boarding stops above ground. Drivers are also often hostile and rude.

The drivers who are nice, or simply businesslike, I very much appreciate.

I like to get around town, by myself or with my friends or my kids, without being yelled at and humiliated in public.

Feel free to tell stories about accessibility and bus drivers in the comments, if you like.

Thoughts on UberAssist

Yesterday I found out that UberAssist was available in San Francisco. Since both my manual wheelchair (a Quickie Ti rigid frame) and my mobility scooter (a TravelScoot Jr.) can fold and fit easily into the trunk of any car, I have used Uber and other taxi-esque programes since they were first available to me. I understand UberAssist as follows:

* Drivers can opt in to take a training class (online) and a test in how to assist disabled and elderly passengers in a polite and helpful way.

* The training was developed by some outside consultant.

* The training is free for drivers.

* UberAssist rides cost the same for passengers as UberX rides, and the drivers get the same payment rate.

While I may use this service, I am dismayed and worried. This is simply the behavior which all Uber, Lyft, and taxi drivers should follow: being polite and helpful to their customers, and not discriminating or behaving in a rude or bigoted way.

Are “regular” Uber drivers going to now refuse to pick me and my wheelchair up, and tell me to instead call UberAssist? That seems a likely outcome. When that happens, I will complain to the fullest possible extent not just against the individual driver but against the company, which should, and obviously can, require all its drivers to pass anti-discrimination training.

To top this BS off, Uber is offering the inspiration porn-like option for riders to be charged a higher fee for their ride, out of which a dollar will be donated to the Special Olympics, a button labelled “INSPIRE”. Yes… Inspire. Soooo, which disabled taxi users did they ask what they thought of that name and that option? This is Uber’s response to facing a $7.3 Million fine in California? Or the ADA lawsuits gearing up?

liz with a wheelchair wheel in a taxi

So, meanwhile, I needed to get downtown to the Independent Living Resource Center and I was feeling too exhausted and in pain to take the bus for 40 minutes plus. I tried the UberAssist option. Enough drivers must have taken the training and signed up for the program in San Francisco to give a reasonable density of drivers. Response time to get to my house was 3 minutes for UberX, and 17 minutes for UberAssist. Not great but not unworkable for me. The driver who responded explained to me that I was his 2nd Assist rider, and he signed up for the program because he loves helping people. I told him that I also love helping people. (It did not seem to be part of his thinking that a disabled person might help people.) We conversed pleasantly. I think he was a bit disappointed he did not get to Help me a bit more. He also complimented me on my “positive approach towards life”. Fellow crips will know how “happy” that made me. However, I can fake it to be polite.

On my way back, I had a super helpful and nice driver who said we were her first Assist customers. I appreciated her helping me and my son load my folding scooter into her car trunk. It felt like a normal human interaction. It was not really any different from most other times I have taken cabs. Most drivers get out and offer help. If they don’t, I can usually lift the 30 lb scooter into a trunk on my own. If I can’t do it on my own I most likely have planned to have someone with me….

Also feel I should mention, I don’t always take extra time to get into a cab. Sometimes I’m a bit clumsy or unprepared or I ask for help. It is a matter of an extra minute or maybe two. Not any more than someone with a suitcase would need.

For an example of how some drivers think about disabled and elderly people (bigotedly), have a look at this discussion forum for drivers. It was so horrible that I could not get completely through the multi-page thread. These drivers seem convinced they can and should refuse wheelchair using and elderly passengers, and, that if they don’t, Uber should pay them more for driving them. This is just heinous.

And yet, over the years I have only had one driver behave badly (very badly) to me and one driver cancel after I mentioned my folding wheelchair in a text.

Will I really wait 10 or 15 extra minutes for a cab routinely, for the sake of possibly increasing my chance of being treated with normal consideration?

We’ll see if UberAssist backfires or not. Maybe it will become routine for more drivers to take the training.

And maybe, able bodied and non-elderly people will use it. That might have an interesting effect on the outcome and politics of this social experiment.

If you’re in New York City, here’s a protest happening tomorrow: Krips Occupy Wall Street (OWS Disability Caucus). Do come out and support the protest!

“As you may know, Uber now has 18,000 vehicles in New York City — but not one wheelchair-accessible vehicle. We’re throwing up a protest line — we call it a roll-in — at the Uber offices on 26th Street next week on THURSDAY, JULY 30 at NOON. If you’re around, it’d be great if you could be there. Can you come by? Can you bring anyone? Thanks.”

None of this takes away from the important fact that we should be fighting to make buses better for everyone, and for taxi drivers of all stripes to have better employment rights and protection.

Informal register

I miss “real blogging” and was thinking that one reason I have been having blog-like posts and conversations on Facebook rather than here is that this blog feels more “formal”. I intended that from the beginning, but what if I were to be a bit more quick and casual in how I post here? It won’t feel like a conversation since comments are rare and our methods to find and consume people’s unmediated or unedited public writing have shifted to happen via tumblr/facebook/twitter/medium. I also use Dreamwidth for informal posting.

Here is a commitment to continue the pleasant ramble of my long posts on a platform which I sort of control (though not with the ideological purity of running my own server under my desk or whatever, since I use a hosting service).

Is this now an actual move of resistance?

I have a feeling the conversations will happen on FB and Twitter. The FB conversations especially will be lost in the mists of time and proprietary control and unsearchability and crap API. Alas. The Twitter stuff is at least reachable and searchable and I believe it has more chance to be archived for the future.

This, also, because I am increasingly annoyed at which people and posts Facebook shows me and doesn’t show me, even on the “See all” setting.

liz-flipping-off-with-funny-tshirt

Stuck at home with shingles

I came down with shingles a week and a half ago. It’s in a stripe around the left side of my torso. It’s been a weird adventure. The skin where the rash is burns and has allodynia (sensitivity to touching anything, and even to air). The muscles ache and spasm and are weak. It is physically intense. I am dizzy and groggy from the nerve pain medication, and feel strange from the burst of prednisone. It is quite odd to have pain and dysfunction in a new spot on my body. I got antivirals very very quickly using a local doctor housecall service.

I am already disabled and deal with chronic pain; there are good and bad sides to that. The good side is that I have many coping strategies to deal with pain and impairment, practical skills and emotional skills. The bad side is I am often right on the edge of overloaded, and this pushed me over it. The other thing is that I have to remember firmly this is 95% likely to be temporary. It isn’t something I have to adapt to forever and learn how to live with. I just have to rest and get better! This book, The Pain Survival Guide, is very helpful and pragmatic.

I will lie here like a sort of cosily beached flannel coated manatee, gently hallucinating in and out of dreams. Clothes and blankets hurt. I have a large silk scarf toga, a light gauze sundress, and a flannel tank top that work ok as clothing. Any motion hurts, and any weight or something touching my left side hurts extra. It is hard to use the computer, or to sit upright for long. I can balance the laptop on blankets and pillows across my hips while lying down. But the phone is easier. I have laid here swiping through twitter and now Facebook (which I’ve never had on my phone before this), and idly reading news and the few blogs still active in my RSS feeds. I very much miss the feeling of blogging being outside of particular platforms! It is so good to see friends and chat with them and be distracted by the Internet and by books.

Books: the Bloody Jacky series (trashy fun, with Napoleonic era naval adventures and girls’ boarding school, combined!), and lined up for when I feel a bit better, Shadowshaper by Daniel José Older, and Marguerite Reed’s Archangel.

One thing that comforts me a lot in this state is to have a nicely arranged bedside table. It gives me a feeling of control over my environment. It is pretty to look at, satisfying somehow, and I can get many things I need without asking for help or getting up. I have flowers on it, my touch lamp torchiere (pointing up) which i really love being able to adjust to 3 levels of light, shea butter, coffee/tea mug, a giant chunk of green glass, my crystal cube holographic print of the entire universe, and my wooden letter rack that holdes all my devices sideways for recharging. It holds my 11 inch Macbook Air, a kindle, an external hard drive, my phone, and an external battery and sometimes also Danny’s mini iPad. That’s a lot of devices in a very neat, compact space!

Nightstand

Two big power strips are hung on the side of the nightstand. Over the power strips in the space between the bed and the nightstand, I now have a thing I bought off Amazon, called an “Urban Shelf”, an idea for a thing covering this space which I have tried to construct from junk several times and failed to implement. the Urban Shelf works very decently. Its slots for power cords have been helpful and now my million tangly cords are less in the way. Right now the urban shelf holds a kleenex box but it has also been good for my entire laptop, plates, etc.

I like being able to look over at the nicely arranged nightstand at the flowers and polished wooden surface. I polish it with lotion or oil. I like to turn on the lamp which glows gently through its own glass, the red glass of my bud vase and the green and universe glass. Past the flowers on the side of the narrow bookshelf I can see my little trading card that has Oracle on it at her computer. Secretly corny shrine to Oracle….. Maybe I will get an Instapainting oil on canvas version of Oracle surrounded by screens in her wheelchair. I find it so heartening – I can’t experess how it chirks me up to connect anything about my situation with a badass superhero mastermind.

Oracle screens

Here is my amazing instapainting of a scene from Journey to Babel that Danny got me for my birthday last month! I like to think it stands for my love of translation (and science fiction). Maybe I’ll move it from the living room to the bedroom, so I can gaze upon it from bed and laugh.

Journeytobabel

Inside the nightstand drawer I have many conveniences like earplugs, nail clippers, lidocaine cream and other lotions, usb sticks, clips, headphones, lip balm, bookmarks, hair ties, toothpicks, some medicine, pens, scissors, asthma inhaler. I would be so lost without this magic drawer full of junk! The cubby below the drawer in theory should have a selection of good books but right now it needs to be cleaned out since it’s so stuffed full of books you can’t really get use out of it.

Maybe if I have a limber and non dizzy moment I’ll clean out that cubby and stock it with only a few books good for bedside comfort, a drawing pad, crossword puzzle book, and maybe a couple of “to read” books lined up (instead of an enormous jumble).

Of other things to appreciate about my situation, once again the steroid burst means that I have almost ZERO allergies. This never happens except while traveling to new places or when I’m on steroids and for a few weeks after the steroid burst. It’s a small luxury to have my sinuses feel so light and not swollen and to not have to blow my nose all the time. Yesterday I sat on the front porch and pinched leaves off several potted plants (could only use my right hand, ugh) and did not get a giant sneeze attack or have to take actifed or benadryl.

It it comforting that I can get anything or help with nearly anything at whim from Instacart, Amazon, or Taskrabbit. (And I have been doing that.) Money and these sorts of services replace what otherwise would be me asking for a lot of help from family and friends and community and really, public services. (Which I am also getting at least the family/friends, but it’s lovely to have the money to just hire people, somehow). If I want flowers, or chocolate, or food, or someone to fix the dripping sink or whatever, I have only to fill out some forms and stick in my credit card. It is a great luxury. (That most disabled people do not have.)

It’s sketchy to react by always playing the “glad game” like Pollyanna or being a patient cheerful invalid like Katy in What Katy Did, but it also helps. Like, every time I get up to get myself some tea, I think how much I appreciate being able to do that and I take pleasure (and pride to some extent) in all of it, in the entire process of simply getting myself some tea. Walking across the house, maybe I can look outside on the front porch for a moment and have a look at the world. Whatever level of ability or function I’m at there is something to appreciate. This sounds a bit nauseating I know. But it is sincere.

I miss work a lot. For a few days earlier in the week I was reading and responding to urgent work email. Right now I feel too drugged, stunned and distracted by pain, and messed up in general. I am exhausted. If I can adapt to the drugs over the next few days maybe I can start working. But it seems more likely (depressingly) that I need more time out.

Some other coping strategies: Doing very short sets of easy physical therapy exercises, then setting a 5 minute alarm on my phone for a “power nap” where I close my eyes and breathe deeply. If that leads to a real nap, great. If not, I have rested and put down my books and phone or computer.

I have not found a good video game for distraction. I need something turn based or not-twitchy, and not stupid or full of ads. May play through Monument Valley for the 3rd time. I was going to try the new Master of Orion (since I remember loving the original one), and it looks nifty, but it was so much like actual work and has so much “executive function” that I lack right now, that I am not doing it. I still play Threes. (top score in the low 30K range) Nethack is nice but it’s too hard to hold up the computer. I play clash of clans (with my family in a clan) and dominations but am a little bored with both. I can recharge things for Ingress from bed, but am running out of power cubes. Not so fun when I can’t get out.

One bad thing which I will complain about, besides the skin pain and “shocks” and burning and allodynia, is that my left side feels wrong and strange. The muscles don’t work right along with the deep ache, and they spasm. I think that is maybe straining my other back muscles on that side. Sitting upright and walking and bending over feels hard and wrong. What if it stays that way…. If it does I will adapt. My ribs hurt and my guts in that stripe on the left around front and back, feel all wrong. It feels hard to use my left arm to reach or do anything since it uses some of those side muscles, I guess. Especially reaching upward or outward. The muscles in my low back just underneath the “stripe” are very sore and messed up. It is probably temporary as part of the shingles inflammation or infection of the nerve.

From looking at charts I think it may be T8 or T9. Hard to tell… Just below or at the edge of my ribs. To me, it seems wider than just one stripe, because it goes from my lower rib to my navel. Maybe it’s T9. Interesting to look at the nerve/dermatome charts, anyway!

I hope to be able to leave the house and go to my sister’s house this Sunday. If I can make it into a cab and up her stairs, I can lie on a splendid couch and Danny and I can see my son, my sister and my mom and nephew and brother in law and 3 cats and 9 chickens and Laura’s beautiful chaotic experimental garden. It’s Danny’s birthday today and my sister’s birthday tomorrow so I expect someone will be making cake and probably knowing my sister and brother in law, some sort of special fancy amazing hipster cake.

Trip to Whistler for Mozilla's work week

Our work week hasn’t started yet, but since I got to Whistler early I have had lots of adventures.

First the obligatory nostril-flaring over what it is like to travel with a wheelchair. As we started the trip to Vancouver I had an interesting experience with United Airlines as I tried to persuade them that it was OK for me to fold up my mobility scooter and put it into the overhead bin on the plane. Several gate agents and other people got involved telling me many reasons why this could not, should not, and never has or would happen:

* It would not fit
* It is illegal
* The United Airlines handbook says no
* The battery has to go into the cargo hold
* Electric wheelchairs must go in the cargo hold
* The scooter might fall out and people might be injured
* People need room for their luggage in the overhead bins
* Panic!!

The Air Carrier Access Act of 1986 says,

Assistive devices do not count against any limit on the number of pieces of carry-on baggage. Wheelchairs and other assistive devices have priority for in-cabin storage space over other passengers’ items brought on board at the same airport, if the disabled passenger chooses to preboard.

In short I boarded the airplane, and my partner Danny folded up the scooter and put it in the overhead bin. Then, the pilot came out and told me that he could not allow my battery on board. One of the gate agents had told him that I have a wet cell battery (like a car battery). It is not… it is a lithium ion battery. In fact, airlines do not allow lithium batteries in the cargo hold! The pilot, nicely, did not demand proof it is a lithium battery. He believed me, and everyone backed down.

The reason I am stubborn about this is that I specially have a very portable, foldable electric wheelchair so that I can fold it up and take it with me. Two times in the past few years, I have had my mobility scooters break in the cargo hold of a plane. That made my traveling very difficult! The airlines never reimbursed me for the damage. Another reason is that the baggage handlers may lose the scooter, or bring it to the baggage pickup area rather than to the gate of the plane.

Onward to Whistler! We took a shuttle and I was pleasantly (and in a way, sadly) surprised that the shuttle liason, and the driver, both just treated me like any other human being. What a relief! It is not so hard! This experience is so rare for me that I am going to email the shuttle company to compliment them and their employees.

The driver, Ivan, took us through Vancouver, across a bridge that is a beautiful turquoise color with stone lions at its entrance, and through Stanley Park. I particularly noticed the tiny beautiful harbor or lagoon full of boats as we got off the bridge. Then, we went up Highway 99, or the Sea to Sky Highway, to Squamish and then Whistler.

Sea to sky highway

When I travel to new places I get very excited about the geology and history and all the geography! I love to read about it beforehand or during a trip.

The Sea to Sky Highway was improved in preparation for the Winter Olympics and Paralympics in 2010. Before it was rebuilt it was much twistier with more steeply graded hills and had many bottlenecks where the road was only 2 lanes. I believe it must also have been vulnerable to landslides or flooding or falling rocks in places. As part of this deal the road signs are bilingual in English and Squamish. I read a bit on the way about the ongoing work to revitalize the Squamish language.

The highway goes past Howe Sound, on your left driving up to Squamish. It is a fjord, created by retreated glaciers around 11,000 years ago. Take my geological knowledge with a grain of salt (or a cube of ice) but here is a basic narrative of the history. AT some point it was a shallow sea here but a quite muddy one, not one with much of a coral reef system, and the mountains were an archipelago of island volcanoes. So there are ocean floor sediments around, somewhat metamorphosed; a lot of shale.

There is a little cove near the beginning of the highway with some boats and tumble-down buildings, called Porteau Cove. Interesting history there. Then you will notice a giant building up the side of a hill, the Britannia Mining Museum. That was once the Britannia Mines, producing billions of dollars’ worth of copper, gold, and other metals. The entire hill behind the building is honeycombed with tunnels! While a lot of polluted groundwater has come out of this mine damaging the coast and the bay waters, it was recently plugged with concrete: the Millenium Plug, and that improved water quality a lot, so that shellfish, fish, and marine mammals are returning to the area. The creek also has trout and salmon returning. That’s encouraging!

Then you will see huge granite cliffs and Shannon Falls. The giant monolith made me think of El Capitan in Yosemite. And also of Enchanted Rock, a huge pink granite dome in central Texas. Granite weathers and erodes in very distinctive ways. Once you know them you can recognize a granite landform from far away! I haven’t had a chance to look close up at any rocks on this trip…. Anyway, there is a lot of granite and also basalt or some other igneous extrusive rock. Our shuttle driver told me that there is columnar basalt near by at a place called French Fry Hill.

The mountain is called Stawamus Chief Mountain. Squamish history tells us it was a longhouse turned to stone by the Transformer Brothers. I want to read more about that! Sounds like a good story! Rock climbers love this mountain.

There are some other good stories, I think one about two sisters turned to stone lions. Maybe that is why there are stone lions on the Vancouver bridge.

The rest of the drive brought us up into the snowy mountains! Whistler is only 2000 feet above sea level but the mountains around it are gorgeous!

The “village” where tourists stay is sort of a giant, upscale, outdoor shopping mall with fake streets in a dystopian labyrinth. It is very nice and pretty but it can also feel, well, weird and artificial! I have spent some time wandering around with maps, backtracking a lot when I come to dead ends and stairways. I am also playing Ingress (in the Resistance) so I have another geographical overlay on the map.

Whistler bridge lost lake

On Sunday I got some groceries and went down paved and then gravel trails to Lost Lake. It was about an hour long trip to get there. The lake was beautiful, cold, and full of people sunbathing, having picnics, and swimming. Lots of bikes and hikers. I ran out of battery (nearly), then realized that the lake is next to a parking lot. I got a taxi back to the Whistler Village hotel! Better for me anyway since the hour long scooter trip over gravel just about killed me (I took painkiller halfway there and then was just laid flat with pain anyway.) Too ambitious of an expedition, sadly. I had many thoughts about the things I enjoyed when I was younger (going down every trail, and the hardest trails, and swimming a lot) Now I can think of those memories, and I can look at beautiful things and also read all the information about an area which is enjoyable in a different way. This is just how life is and you will all come to it when you are old. I have this sneak preview…. at 46…. When I am actually old, I will have a lot of practice and will be really good at it. Have you thought about what kind of old person you would like to be, and how you will become that person?

Today I stayed closer to home just going out to Rebagliati Park. This was fabulous since it wasn’t far away, seriously 5 minutes away! It was very peaceful. I sat in a giant Adirondack chair in a flower garden overlooking the river and a covered bridge. Watching the clouds, butterflies, bees, birds, and a bear! And of course hacking the portals (Ingress again). How idyllic! I wish I had remembered to bring my binoculars. I have not found a shop in the Whistler Mall-Village that stocks binoculars. If I find some, I will buy them.

I also went through about 30 bugs tracked for Firefox 39, approved some for uplift, wontfixed others, emailed a lot of people for work, and started the RC build going. Releng was heroic in fixing some issues with the build infrastructure! But, we planned for coverage for all of us. Good planning! I was working Sunday and Monday while everyone else travelled to get here…. Because of our release schedule for Firefox it made good sense for me to get here early. It also helps that I am somewhat rested from the trip!

I went to the conference center, found the room that is the home base for the release management and other platform teams, and got help from a conference center setup guy to lay down blue tape on the floor of the room from the doorway to the back of the room. The tape marks off a corridor to be kept clear, not full of backpacks or people standing and talking in groups, so that everyone can freely get in and out of the room. I hope this works to make the space easy for me to get around in, in my wheelchair, and it will surely benefit other people as well.

Travel lane

At this work week I hope to learn more about what other teams are doing, any cool projects etc, especially in release engineering and in testing and automated tools and to catch up with the Bugzilla team too. And will be talking a bunch about the release process, how we plan and develop new Firefox features, and so on! Looking forward now to the reception and seeing everyone who I see so much online!

Armor a mile thick today

This story starts out boring but bear with me, it gets funny and there is a punchline. So, there’s construction in my neighborhood on Misson as they dig up the street and repair some sections of sidewalk. Over by the Big Lots there were a bunch of barriers and hastily constructed ramps to the street and back around some of the work. I went out around the giant orange barrier things and found an SUV blocking the ramp up. I could go back out into Mission or go even further out into Mission. Both not good choices.

Sidewalk construction barriers

I ducked half under the SUV’s bumper and got onto the ramp while holding onto the corner of of the car so I wouldn’t tip over. As I got onto the sidewalk clumsily an older lady with a little kid came up and I asked if it were her car. (Yes). I said, Well hey. You are blocking the ramp! There’s construction so it was hard to get up. She started yelling at me. I can’t remember what! But it was mean. “You should go on the other side of the street then!” At one point she said that I should read the sign — if I could even read! Because the date wasn’t for today and she was parked at a meter! Arrrrrgh. Thanks for the implication I can’t read!

I finally yelled back, “All you had to do is say, sorry for blocking the ramp, BUT NO, you had to be a huge screaming bitch!” And zoomed off filled with fury and sadness.

SUV blocking the ramp

Hahahah! So much for my composure and wisdom from yesterday! Some days no bullshit happens and some days it does. Some times I can handle shit and sometimes I fly off the handle. I got over it and laughed at the whole thing before I had gone another block.

So, I got to the notary office and hauled myself painfully over the non accessible threshold. The notary guy was helping someone else and kept giving me sort of dirty looks like I should not be there. The dude he was helping had to go get some extra documents from his car a few blocks away. As he left, the notary told me to wait till he finished with the first guy. I said something neutral like, it’s good to finish with one thing before you move onwards. All fine so far but I could feel that he didn’t want me there.

Half an hour later he filled out my form and got my thumbprint and everything. Another dude came up and …. unbelievable… he told me to wait until he helped Dude 2. I thought about calling him out on it. Calmly asking him, did you notice that you asked me to wait for you to finish with that first guy? But then, did not ask the next person after me to wait for you to finish with me? Why was that? I looked at him and thought about how his tension would then turn to outright anger. It wouldn’t matter how I asked him to discuss it, he would be hostile and would escalate, 99.9% certain.

Decided it wasn’t even worth it. People sometimes assholes, life not always fair, minor inconveniences happen, we all have annoying things. I just hope he did the form right, unlike notary #1 a week ago.

I headed home. (Negotiating the crumbling, soft, rutted ramp with no problem now that there wasn’t a car blocking it.) At the corner of my street, a tall white guy with very close shaved grey hair started yelling at me. “You almost hit me on that thing, it’s dangerous! You’re not even sick! If you are sick, you’re a waste of space! The problem with you people….” (That again!!!!!) “The problem with you people is you just don’t think.” I said that I was sorry I nearly hit him. And was glad I didn’t run into him. (Sincerely.) (Though he was rude and mean.)

He continued yelling. I then said (we were going the same direction, him next to me) Ah, you maybe didn’t hear me, I just apologized for not seeing you and nearly hitting you. I’m glad I didn’t run into you.

(More screaming)

“OK. Well. I hope your day gets better….”

“I hope your LIFE gets better!”

“My life is pretty great actually.”

He responded, “Well the problem with YOU is, you get all the pussy, and I don’t get any of it!”

I am sure I cracked up laughing at that point but I only remember staring at him incredulously.

“You know, you are right! That is completely true, man!” I couldn’t tell at this point if he was joking! What the fuck? But I’m laughing, maybe he’s joking?

“You steal everything. You stole all the pussy and that’s UNFORGIVEABLE. The rainbow is for everyone. YOU STOLE THE RAINBOW!”

“Oh, wow. You are 100% right. The rainbow IS for everybody! I mean, rainbows! They’re great.” Now I’m just resigned that he’s not at all joking, and I’ve incorrectly started fucking with him and he’s going to punch me in front of my own house. And yet my mouth runs off. And his saying that I stole the pussy and the rainbow also weirdly made me crack up while it was also super sad.

“Yes it is. The rainbow means something. It’s from God. It’s got a purpose to exist. And you don’t. You shouldn’t exist.”

It is funny that you can’t tell if people are going to hate you more if they think you’re not “really” disabled, or if you are! Sometimes, a stranger’s gaydar, lavender hair, and maybe wearing your kid’s My Little Pony Rainbow Dash t-shirt trumps disability completely! Jeez, first they came for our curb cuts but they couldn’t stop there, they had to steal the pussy from the men and the rainbows from God!!!!

Somewhat spooked and really, I thought I could defuse his anger with a little conversation, right up until the point of no return. Now he knows where I live!

Deep breaths, carry on, blogging it because I feel the impulse to share — though now it’s like I’m horrible for making fun of this poor messed up dude. I’m so tired! How can all those things happen in just going 3 blocks from my house and back?

Rainbow power!!!!!!!!!

Rainbow butterfly unicorn kitten

On a ramble in the city in the sun

Up betimes and to the office, where I had a lively time in various conference rooms and having lunch. Milo brought Minecraft and a book; we hung out talking about role playing games and science fiction with my co-worker Marc and my team’s intern Kate; then had a strangely nice time (for a day when a lot of technical infrastructure broke and we had to flail around to get things to work). I remarked to Ritu and Kate in our free form working-on-things meeting that I was so happy they are both interrupters. If only one of us was, it would be awkward. But with three rapidly thinking juggernaut talkers we jostled ideas and work around them, getting a lot done and building a group understanding of how we’re reading bugs and documentation, looking at metrics, and making decisions. My other team members are also like this. We can listen too — it is a comfortable mosh pit.

As usual I am wildly impressed by the deep knowledge of so many engineers at work. Stuff breaks or we have conflict and yet so much happens. My goal in going after a job at Mozilla was to be in a huge collaboration to make things bigger than I would ever know how to make on my own (after years of mostly lone projects, from zines to book editing to being a lone developer grubbing away in a dark corner). I am still obsessed with what collaboration can be and how it can be structured, and see interesting traces of generations of idealism echoed in our tools. (insert imaginary digression into c2 and meatball wiki history and LambdaMOO…. ) The answer to “why can’t you delete your bugzilla comments?” is actually this giant wild ride into epistemology and communication and truth but you would not necessarily suspect that if you weren’t there. So many things are like this. You look at a bridge, and if you know what ideals inspired the engineers of the time you understand why it is the way it is. Looking at every object, you have to assume that may be the case, just as every person has a deep background from which they have constructed themselves and been constructed. I was feeling this a lot today. This engineering perspective is why I love reading Henry Petroski….

I did promise a ramble! Milo and I went out along the Embarcadero, playing Ingress. I wanted to go down to the end of the pier near the Ferry Building, on this rare warm day when I had the (faked) energy to be out of the house. The sun baked us, we looked at the painted tiles and poetry quotes along the pier, talked to fishermen (who were catching two foot long sharks) and watched a giant cargo ship (in real life and on MarineTraffic.com) go under the Bay Bridge. Oil tanker, Maltese flag, coming from Benicia. Without even trying, we spent an hour loafing around the pier. Pelicans were diving. People asked me about my mobility scooter. Water sparkling, ferries zooming around, someone in a bathing cap swimming around in the freezing ocean! I love waterfronts because they make me feel like I’m in a Richard Scarry Busy Busy World page!

San Francisco waterfront

My plan was then to adventurously take a MUNI train from underground instead of doubling back to get on the F, then transfer to the J to go home Instead, we braved the confusion of underground. The plan: go to the Castro for comic book shopping and dinner. Everything worked out. The train was crowded, but no one was awful. The smellavators, I mean elevators, all worked. We speculated on what it would be like if they just made the lifts into actual toilet stalls. Milo now unfazed by all this chaos while 5 years ago he would have been miserable to be dragged around, needing to check out and daydream or read in order to tolerate it.

I had never been in the Castro underground MUNI station. Weird huh? I knew abstractly that’s what those stairs must be for. But why would I ever go down them? I also have no clue how to get to the underground bit of the Church muni stop. Someday will pop out of it like a gopher and stitch those geographic manifolds.

Everything today was suffused with contentment. I could not stop just quietly enjoying the sunny warmness, the city, thinking on how we were in a place that other people around the world come to on purpose to enjoy.

Pain was terrible today honestly but I was in a state where I could ride it — And enjoy everything.

Liz on a pier in the sun

Cannot do that more than one day in a row. Tomorrow is for working from bed, ice packs on the ankles, and doing nothing more difficult than hobbling out to water the plants on the front porch.

I reminisced a bit to Milo about memories of past SF Pride parades and the Dyke March, and how I feel a little surge of the happiness of coming to SF every time I see the rainbow flags on Market Street. I said how the fact that I roller skated half naked down Market and the next year was in my manual wheelchair hanging onto the back of some strange guy’s motorcycle with my sister pulled along behind me, gives me this weird feeling of strength and history. And how I have been going since 1991, a long time now. We used to take Milo to the playground at Civic Center with my ex Nadine and her family and the kids would just be like, Mom… there is a guy dressed only in balloons. (Yes dear! He’s celebrating! How amusing! Many of the rules of life get broken today!) While I don’t often tell stories about my life to the kids I try to mention at least some of the facts or things that will make them think of their own experiences as existing in a story or history as well and to appreciate everyone around them has experiences as interesting to know as reading a good book. And, I think it would be weird to think of your parent as just your parent, and then 20 years later go, Oh, and by the way surprise she was flouncing around naked in the streets back in the day. Better to know up front so as to get used to the mildly scandalous facts. There is no need to go into details.

So our wandering around today was like my substitute pride weekend. I’ll be out of town this year for work, and anyway, have difficulty keeping up with the crowds. How much nicer to sit in Harvey’s on a mellow day like today — mediocre food but a nice spot to have a drink and gaze out at the rainbow crosswalks – people passing by in their shorts and tank tops. We read the little flyer about Harvey Milk while pondering injustice. Alas, the comic book store was closed on Monday.

Then to avoid the horrors of the 24 at rush hour (always full, passes me up regularly from that direction, rage-inducing) we flaneured down 18th to look out over the park and take the J train. I felt happy thinking of the excellent punk band J Church. Lovely view over Dolores Park. Pointed at our history pet, the Golden Hydrant. (Also, it is a portal, so, hacked it.)

I feel lucky my son can enjoy my quiet pace of wandering around the city and that he is such a good companion for observing and talking, chilling out and reading books in random places. Not for the first or last time I thought of that kind of cheesy sentimental Juana de Ibarbourou prose poem Diary of a Young Mother.

I will be old when my son becomes a man. And when we go out to walk together, I will pretend to be hunchbacked, so that he will seem, at my side, to be more gallant. I will be a little old woman full of crafty tricks. I will learn to stumble once in a while, so that he can support me. I’ll have to feign exhaustion, so that he’ll give me his arm, saying:
          “You’re tired, Mom?”
          And the girls, who surely will all fall in love with him like fools, will say:
          “That crippled old lady on the arm of this handsome elegant man — it’s his mother.”
          And I’ll walk on secretly swelled with pride!

Unlike Juana I don’t have to pretend! And yet am more likely to be the support, open the door, carry his books (since I have this handy sturdy exoskeleton).

Part of a plan! Teen fantasy/sf book and comic book club at Borderlands. I will help Milo make it happen this summer. Isn’t it odd that the libraries, despite having a gazillionty kid/teen events, don’t have just like… a get together for kids who love to read? Not an improving aspirational reading list for the summer or a workshop on origami but … talk with people who love to read for fun, who are your age. Milo remarked how it took him until very recently to realize that most other people don’t read for fun but see it as this special educational activity. It’s good to find your people. It boggles his mind that people would consider one form of culture or art or writing to be somehow elite and high and others, not, when obviously that changes over time anyway and with every new art form! The apple doesn’t fall far from the tree in this case! But it’s like he gets to avoid my horrible childhood snobbery!

I thought of my nice day yesterday going out with Danny to eat oysters and weird candy cap mushroom creme brulee. We had just a day to catch up between two of his work trips and a ton of ideas to talk about, his talk at PDF, the general odd zeitgeist, what will happen with the elections and disinformation and astroturfing (my code for this is just muttering “venezuela” which if you followed the last 10 years of politics there and online arguments you will know means, you can’t tell what the hell is going on and everything is fucked). (Obviously that political situation is not special to VZ; it’s just that I was paying attention to it at the time.) We talked about writing projects. Gossip — ranging far afield — the psychology of everyone — ourselves — etc.

So, meanwhile, I complain about spending a lot of time just being in bed or on the couch. And sometimes resent that going to the drugstore 3 blocks away is my outside of the house activity for the week. How pathetic that little bit of happiness seems when I feel down or when I’m wishing to travel all over the world. But it isn’t really a bad thing and I think never will be. When I’m 90 I’ll sit on a bench feeling the sun, taking pleasure in that. It will be just fine.

A small but determined ambition: have periodic short writing times, with many different people, including Milo and Danny…. Some sporadic instances of Writing Together but separately time and talking over projects, rather than a regular habit which none of us can stick to because of the structures of our lives. How will I model sustainable feminist activism? This question my therapist posed has been a fine mantra over the past 8 months or so.

This last week I thought a lot about my friends and people in my life, thinking of them with huge affection. I want to write letters to everyone. What if I just write nice letters to people over this next year? But not “just”. The idea I was ticking over at this time last year was to do an anthology that is exactly to my taste of memoir and essay. I want to pull people together to represent this moment as intensely as possible. I am picturing this process and this artifact and will make it happen. I want to get out a lot of my books and stuff about diaries, and memoir, and feminist ethics, and jump from thought to thought to see what gets thrown into the mix before this project coalesces. Last year’s events made it hard for me to settle. Now I think I know what to do here. Think on history and activism. Riot grrrl slips into the realm of the mythical past. Moments flame up like comets. Collisions are bright shining. You know the Combahee River Collective didn’t last forever. But the people carried on their work in different trajectories. What they built still stands. The effort to collaborate that intensely is not failure because it’s ephemeral – Like all relationships.

Anyway, back to the day.

I felt content and good today. The good wishes of hundreds of people casually on Facebook (that exploitable butterfly) made me think fondly of everyone and I felt loved and appreciated for whatever it is I’m doing now, though it isn’t splashy or what I had planned. People are cynical about that “shallow” social interaction but I do love it. What could be wrong about thinking of another person for a moment, even if you don’t have them in mind all the time, or even for years?

Going across town is still a big deal for me that makes me happy. I do miss being able to get in my car and drive around exploring waterfronts and going all the places possible from the map. Instead: this is the time I’m in this city, in this way, and I’m going to enjoy it.

Small ambition!! Friday I am thinking to get a tres leches cake with pineapple whipped cream from Lelenita’s and invite a few people over. Cake time! Maybe… cake and poetry? Salon time; small private spaces. My feeling of not being ready to write a new different (poetry) book solidified oddly while Danny and I talked at our fancy Sunday lunch. I begin to see the problem there. It is our view of the failures of our collectives. Returning to our romantic idea of the End of Greatness. To get there I need to look further somehow.

Obligatory mention of books: Cixin Liu – just read everything of his that you can lay your hands. The novellas and short stories are beautiful. Read many of them in a row! You won’t be sorry.

Accessibility at the beach in Tulum and Akumal

I just got back from a fabulous vacation in Quintana Roo. We stayed in Tulum, in a small, funky, beachfront hotel zone, and then in Akumal. There is a lot to say about the trip but first of all, here are my notes on access, since that’s what I was looking for when I was planning the trip. This will be a Very Long Post!

My hopes were for warm water, beach access to calm water for easy snorkeling, small hotel right on the beach, and some scope for scooting around that wasn’t just in a single hotel. Both hotels I contacted in Tulum and Akumal were happy to explain the accessibility. Neither hotel was completely wheelchair accessible; what I wanted was just reasonable possibility that I could walk a few steps and be on the beach, and also that I should be able to leave the hotel on my own with a wheelchair or scooter. Akumal was my main goal, because I read online on some forums that a wheelchair user lives and works there and that the town has some curb cuts and ramps to accommodate them. That sounded promising!

For the flight to Cancun and back to San Francisco, United flight attendants let me put my TravelScoot (disassembled, not in a bag) in overhead bins. My partner and son took care of that. Without help, I would most likely have had to check the scooter at the gate. It was so nice to know that my scooter was going to be OK, not break or freeze in the cargo hold or be lost and was under my control. What a huge relief!!

(I do not know how anyone uses the TravelScoot duffel bag. I tried it… once… in my garage. It was like trying to stuff a floppy-jointed tyrannosaurus skeleton into a sausage casing. Not gonna happen, ever!)

Cancun airport was nicely accessible. It was extremely easy to get cabs. I had booked a shuttle ride beforehand with DiscoveryMundo. They were just outside the terminal building exit with a sign for me in a crowd of other drivers. It was a giant van we could have fit 10 people into, and probably twice as expensive as it had to be. I will just get a regular taxi when I go back. I appreciated having things arranged, though, and our driver Julian was extremely nice.

Our small Tulum hotel, Piedra Escondida, had about 10 feet of deep sand in the walkway up to the main entrance and lobby. Danny had to carry it and I walked with my cane. Once I was in the lobby, access to the indoor restaurant was flat but there was a step to get outside or to the registration area. We had to get across another 100 feet or so of sand to get to our little beach cottage, which had a tile paved porch and another small step to get into the room. I was able to bring my scooter inside and charge it with no problem. Our cottage (#6) was nicely positioned for me to get across short, maybe 10 foot stretch of deep sand to a grassy area I could more or less scoot over to the street out a back gate. It was rough but I could do it on my own (just barely).

porch with hammock and beach

This hotel would be reasonable for someone who, like me, can walk a little bit. And only for the most daring of manual chair or TravelScoot users or someone who does not mind getting help across the pockets of deep sand. The porch was nice enough, with a hammock, two adirondack chairs and a view of the beach and ocean and coconut trees, that I would not have minded staying on the porch quite a lot, which is what I did! The lobby was nice to hang out in, shady and relaxing. There was wireless, at least from the restaurant and lobby, and we could also get wireless pretty well from the porch but not the room. The bathroom was not wheelchair accessible and there was a shower with no bath. A nice shower though! The running water is all salt water. You get bottled water from the hotel or the mini mart to drink and brush your teeth with.

The restaurant for the hotel was good, a bit expensive, but very nice food, lovely people, right on the beach and outside, with wind screens up.

There was a constant warm breeze, more intense at night, which seems normal for this part of the coast for April. I am always cold where I live in San Francisco, despite wooly socks and long underwear. It was nice to hang out all day long in nothing but a bathing suit and sun dress or skirt.

liz in sundress at beach

My forays into the street were fun but of fairly limited scope. There was a short stretch of hotels, restaurants, small shops with textiles and beach towels and souvenirs, and a very nice minimart. I bought a rainbow flowered iipil (the kind of pretty white embroidered thing that in Texas, if dress length, was colloquially called “a Mexican dress”) and some flip flops in the kiosk next to the minimart. There were ATMs and a couple of kiosks where you could book tours or get advice, maps, and so on. They were both helpful. There was a very short and not very well ramped stretch of sidewalk in front of two restaurants but other than that I was scooting in the street along with a lot of bicycles and some cars and trucks. It was easy to get a taxi any time of day or night. South of our tiny strip of businesses and beach and tall trees, there was a rocky sea wall or pile of riprap along the little road, no trees, hot and dusty. I did not go past this sunny stretch of road to the main beach of Tulum’s hotel zone where I think there are a LOT more small boutiquey hotels including some gay nude ones and a lot of people who do yoga and more restaurants. None of the hotels in the “north” bit of the hotel zone, where I was, had good access to the street for a wheelchair user, but again, they all seemed vaguely doable for someone who can either walk a tiny bit or who can power through some gravel in a manual chair.

I walked onto the beach I think three times. It was a little bit steep for this to be easy for me. In short it was difficult. The water was rough. I am a skilled swimmer still (if not strong any more) and very good in ocean waves from a lifetime of enjoying bodysurfing and boogie boarding. But the deal breaker for me was uneven footing and shifting sand underfoot and also, rocks. I had short dips into the water but could not swim around as I would have liked. It was still relaxing and awesome to be there. There were iguanas! I also spent a lot of time watching the magnificent frigatebirds and brown pelicans glide overhead. Danny practices his ukelele a lot, and we all read constantly on our Kindles.

Tulum Pueblo itself looked interesting. It was maybe a half hour (or a bit more) walk away from our hotel, with a very nice sidewalk and bus stops along the way. I did not get to explore the town. Many people in the Hotel Zone (or, as I thought of it, the Gringo Zoo) rented bikes to get to the town and its reportedly great restaurants. It was just too hot for me to want to go that far and a bit too much bother to get a taxi to town with the scooter. And so easy to eat at our hotel and the Mateo’s Gringolandia Grill or whatever it was, across the street (which was very nice, relaxing, had good food and live music; possible to get into without a step if you went through the gravel parking lot; with one step if you went from the tiny stretch of sidewalk).

We had two day trips out in taxis. One day we went to the Tulum archeological site, aka the ruins of Tulum. I read up on Tulum’s history, online and in several books, and was excited to go there because it was one of the places I had read about and seen in engravings a long time ago from my dad’s books by John L. Stephens with the engravings by Catherwood. (Alternate universe Liz, I think, would have hopped on the translating Mayan glyphs train at University of Texas in the 80s, when they were starting to make major progress. I had that dream!)

engraving of tulum ruins from 1844

I read Friar Diego de Landa’s “Yucatan: Before and After the Conquest” in the Dover edition with an interestingly socialist introduction from the 1930s. I have read the Michael Coe Maya book several times in the past but did not re-read. (I will do that now, though.) Other books — Tulum: Everything You Need To Know Before You Go To the Ruins, which I would say delivers well on its promise. It has some of the history of the area ancient & recent, including explanations of the recent development of the area. I really liked this book a lot, enough to want a paper copy of it. Another excellent book: Maya for Travelers and Students: A Guide to Language and Culture in Yucatan. I went through it and wrote out all the Mayan words and phrases, eventually making a set of flash cards as I hung out in the hammock gazing at the ocean. I may continue learning Mayan. More on the history of Tulum, and on language, later in another post. This is supposed to be about access!

So, the Tulum ruins. After a 10 minute ride we got dropped off by a taxi driver at a quiet entrance on the coastal road side of the ruins. From there we went down maybe a quarter mile or less of flat, not too gravelly, path. The entry ticket booth is accessible and so were the truly palatial bathrooms at the entrance. Past the ticket line you can get a coke in the gift shop provided that you can walk up a step, or can fly. There was a cool diorama just past the entry, then some hard limestone paths, a little gravel but not a problem, to the world’s scariest steepest ramps ever. I appreciated that there were ramps, as otherwise it would have been a lot of stairs. The TravelScoot took the steep, corrugated slope like a champion. As it only has one motor in the hub of the left wheel (one wheel drive) it helped, going up, to lean heavily to the left. If you cannot do this, or are in a manual chair without someone to push and you are not a Paralympic athlete, you will be toast. Toast!

Once up the scary-ass ramps there were some signs and then a flight of many steep stairs to the Cenote Tower. I did not try that. Instead I went through the Northwest Gate in Tulum’s walls. Much of the paths in the central area were pretty flat and lightly graveled with a hard limestone surface underneath. I think my butt is still bruised from this foray into Bumpy Road land. I went up to the beach view of the main “castle” building and the Temple of the Descending God but it was steep and gravely and lumpy and sandy. At some point I stubbornly plowed into deep sand, and Danny had to carry my scooter out while I hobbled (a scene we were to repeat several times over our week long trip as I am often imprudent). The beach was closed off since turtles nest there. There was no way I could go up the hill to the Castillo. Oh well! Plenty of other ruins to sweatily look at and Ingress portals to hack. Danny scouted the exit at the Southwest door, or gate, which had stairs. Beyond it were some more sand and stairs and a bridge and more stairs to the real exit. We opted to go back the way we came. I zoomed down the scary corrugated steep ramps past wide eyed other tourists poking each other and gasping out things about the lady with the “moto”.

So: Tulum ruins. Doable, barely, for a wheelchair user if you have a powerful motor, big tires, or are very strong, or have someone to push you who is quite strong and heatstroke-proof. There is not a lot of shade in the central ruins. There is a lot of cool stuff to see in the bits where the path isn’t hilly or sandy. It helps to have a guidebook or just look stuff up on your phone if you have a good data plan (which is what I did, as well as playing Ingress like a total fool). Without the background you might just be like, OK there are some big ruined buildings here, pretty cool. With some of the history I think it is much better. Tulum was a sort of trade port and was founded in a sort of Warring States period around 1200 AD. The walls were because of that situation persisting over hundreds of years, with nobility living within the walls and most people living all over the surrounding area.

From the exit there was a little (free) motorized open bus shaped like a train, not accessible. As usual, we climbed onto it and Danny and Milo carried my scooter up. No one objected. The train decanted us into a giant parking lot area with booths of crafts, textiles, onyx chess sets, coconuts, a Starbucks, and little restaurant-cafes. It also had a very tall, maybe 70 foot, metal pole with guys on it doing something ritual and very acrobatic and amazing to the sound of drums and flutes. They turned out to be Los Voladores de Papantla. I donated some money to the guy who explained it to me. My Spanish is rusty but was really not too bad, the whole trip, and I could communicate complicated things well — just a bit ungrammatically. Anyway, respect to the Voladores and their ritual. If you read through some info on them you will see some of their history and controversies like whether women are allowed to become Voladores (yes in some areas, no in others). I bought a black sundress with cut lace inserts to wear on the beach, a mayan calendar tshirt for Milo, bow and arrows set with stone tips for my stepdaughter and nephew, a small, gorgeously woven bag and a beach sarong thing with turtles on it, and god knows, I cannot remember what else, but I bought a hundred dollars worth of it. This artesanal courtyard / flea market/ parking lot was hot and there were some vendors with hustle all around; I cruised around saying hello but remaining non committal until I had looked at everything. As usual there were some sidewalks but also lots of areas with light gravel, bumpiness, or a step (like to get into the starbucks). I found it very pleasant sitting in a little cafe where the trains stop (no step!) drinking from a coconut and eating fish tacos with Milo and Danny. We hung out there feeling like insiders as we watched several cycles of the trains pull up at which all the cafe guys would pop out with coconuts to entice the thirsty tourists from the ruins. I picked that cafe because it was playing Celia Cruz oldies. The food was great and not expensive. I asked to eat the inside of the coconut expecting they would just break it open and I would scoop out the inside. Instead they brought me the insides already cut up in a giant martini glass with a lime and hot sauce. So delicious!!

We went the next day to Xel-Ha. Despite reading about it online I could not picture what it would be like. It is a giant eco-theme park which reminded me in size and scope and some of the trappings, of the San Diego Wildlife Park. It is huge! But not as constantly scripted feeling as, say, Sea World. I got a discounted entry for being disabled. Entry is expensive, about 90 bucks per person. But that is including food and drink and the snorkeling equipment rental. This whole park was nicely accessible in many ways and very well organized. Entrances to things were level. There were accessible lockers and bathrooms everywhere. The lady at the ticket booth gave me a really really nice access map of the park, with paths of level access, slightly difficult access (i.e. bumpy path) and really not gonna be accessible paths, marked in green, yellow, and red. So nice! It was like a dream map!

It took Milo and I a bit of time to figure out how things worked. We left Danny (not a swimmer) in one of the many palapa-shaded restaurants where he hung out (he later got a massage at the aromatherapy spa). There are various locker rooms in the park which are color coded. We picked the purple station. You check in with your wristband, pick up swim fins, a mask, and snorkel, and get a locker key with a color coded lanyard. We left most everything in the locker but I had a beach bag for towels and stuff. They also give you towels and I think a bag, if you ask. But I had them already. Lifejackets are at the water’s edge. The park stretches around a huge, shallow, calm lagoon, and all the way around, there are many places where you can get into the water, usually by a couple of steps with handrail. I did not check to see if and where the level water entrances were.

We got in the water in several places over the day. I preferred the areas nearer to the ocean, where the water was salty and clear. We saw a zillion fish including a barracuda (omg). I did not have to swim any distance at all to see fish and most of the time didn’t wear the fins (which kind of hurt my ankles) With a lifejacket I could float around and just watch fish go by. In the freshwater end of the lagoon the water was more murky, there were more fish, but also more floating weeds and you couldn’t always see the bottom, which I find irrationally scary. (Much of the time as we got in or out there were people having panic attacks on the steps, to be honest.) No one bothers you about anything, you are free to roam around, snorkel, get out, swim, whatever.

There are special photo spots set up throughout the park where you can push a button and your photos get taken automatically and I think uploaded to a usb drive which you take with you. I didn’t look at the details of how it worked. It seemed well thought out.

There were dolphin, manatee, and sting ray encounter areas which you had to pay extra for. If I went back, I would do the dolphin swim. There were a lot of buffet restaurants, stands where you could just grab a cup and quickly fill it up with soda, shops everywhere, bars, and shady seating areas, a “hammock jungle”, a giant playground (not accessible – it was over sand) with short slides into the lagoon and one of those wood and rope kiddie-habitrail systems up in the trees. There is a long path and also a shuttle bus to the head of the river mouth where you can float down into the lagoon in giant tubes.

Fun but very exhausting. The park is HUGE. We only saw maybe a quarter of its paths and things.

The next two days I laid on the porch in Tulum eating cookies from the Mini-Super Pipienza, writing out Mayan flash cards, looking at birds and the ocean and trees from my binoculars, and taking pain meds.

Onward to Akumal. Akumal was like 1000 times more awesome than Tulum for me. Our beach cottage was extremely nice, bigger than our actual house in San Francisco, had a kitchen, 2 bedrooms, a huge patio, a paved walkway that got me 3 steps from the beach and to another hard limestone walkway (the Akumal Trail). The cove is full of boats, people, the beach is also the public town beach, so is very lively. There were more birds. We had a little semi-private corner of the beach with lounge chairs, and interesting rocks to look at. The point had cannons from a Spanish shipwreck from the 1600s. It was very nice to wake up at 6am, make my own coffee and some toast, and scooter myself the 50 feet to the tiny beach. From the paved bath to the cottage, there was a single step…. there was a step inside the cottage as well. To get onto the beach there were 3 steps with handrails. The beach is nearly flat, and not wide, so from the steps (and the dry sand area – the tide doesn’t vary much) it was only maybe 20 feet to get into the water.

beach with pale blue water

From the path I could go on my scooter to the Centro Ecológico, many small shops and restaurants, dive shops for equipment rental, a whole other hotel (I didn’t go that far but it was clearly possible) and then out the little road, or on a public access path, to the Akumal beach archway (the “arco”). Outside the archway was my favorite haunt, the Super Chomak Minimart where the other wheelchair using lady in town supposedly worked, though I never did see her and I felt a little too shy to ask after her. You can buy staple groceries there like fruit, potatoes, bread, pastries, cookies, juice, butter, milk, and any sort of thing you would want for the beach including clothes. Sorry to go on about the corner store but I do love a corner store. The women who work there feed the stray cats (which are numerous and a bit mangy) and they are very nice.

Accessibility was not perfect, ramps steep or bumpy, paths a bit rocky. But navigable in a manual chair. I could have done the whole thing in my Quickie Ti (if I had a bit more stamina).

The path to the point, less than a city block away from our casita, had parts with deep sand. Danny carried my scooter across them and I hobbled. Then we went on a very bumpy rocky path around the point where there are tide pools. Tantalizing. I don’t have the stamina and should not have tried to go down this difficult, exhausting path just to see what was there! I am somewhat covered in bruises from the whole trip, I have to say.

The Lol-Ha restaurant was super nice. Part of it is a Thai restaurant and part is local cuisine. The access to the outdoor bit was very nearly flat but there was a tiny …. maybe inch and a half high …. bump into the restaurant. The indoor part had a steep ramp, too steep for me to get up on my own, I think. The food there was great. I also had very good fish at La Cueva del Pescador and nice but somewhat blander fare at the Turtle Bay Cafe, both wheel-able through some mildly gravelly paths. There were mariachis in the evening roaming about, including a group with an arpa who played joropos, which made me super happy.

The important thing was, I could get around the entire area without stalling out on gravel or sand!

With the scooter, also if I were more into sitting up and scooting around, I could have gotten across the highway into Akumal Pueblo itself, which is tiny but I think would be nice to have a look at. People recommended restaurants there but mentioned it is not particularly scenic.

Milo and I rented snorkeling equipment for 2 days. The water was calm, sand perfectly shallow and gently sloped, water clear. I really liked that we could just go in the water to snorkel any time with no fuss at all. We saw so many turtles! Fish! Sea urchins! Mostly green turtles, and one Hawksbill turtle.

This bit of Akumal beach has many tour groups coming through as well as being the public town beach (free to residents). So, people start arriving on buses around 10am and go into the water with guides in groups of 8 people. There is some limit on how many snorkeling groups they let into the water at once and I think a daily limit on the number total per day. It was a lot of people but it seemed well handled and there is an orientation video in the Centro Ecológico that explains the rules about not touching any coral and staying well back from the turtles.

I played with some local kids one day (mostly by giving them all the floaty rafts from the hotel) and had slightly wistful thoughts about how much I would like to really play, but it being better on all levels to stay back and just enjoy their lively energy and happiness. It was frustrating also not to get to snorkel as much as I would have liked, which would be ALL DAY. When I was a kid I would stay in the ocean for hours until my lips turned blue and my grandma would make me get out. I have nice memories of lying down in the warm sand and I still like to do that, just getting covered in sand and getting my face right up to it. I do not like to stop doing things when they’re fun and exciting, obviously. At Akumal I never felt cold at all (amazing) but even taking a ton of pain medication (for me, a ton, not really a lot on the big scale of things) I exhausted and hurt myself swimming around and trying to walk more than I should. With a longer stay I could swim short amounts several times a day and rest more with less excited (self imposed) pressure to scout around and “see everything”. So my plan is to try to go back there for a few weeks at a time, maybe this summer, work from there, and swim a lot. There was decently fast internet which seemed quite reliable. It would be ideal rehab for my ankles and general strength, if I managed the pacing correctly.

I noticed in driving through Playa del Carmen (a lively, large town south of Cancun) that a lot of the sidewalks had curb cuts. It would be fun to go there and cruise around.

One last problem I had was that snorkeling has the temptation, if not the requirement, to look ahead of you and my neck and upper back do not like to do that. I am too stiff to do it well. I got along ok by swimming a modified sidestroke, mostly floating in the life vest, or by going on my back, then flipping over to look straight down. My upper back and neck are still in bad pain from trying to do this.

No one gave me any hassle for the scooter or for having purple hair. Better than at home in San Francisco. Obviously people were eyeing me askance everywhere I went, but politeness or shyness prevailed. When I got to chatting at length with people I would explain: arthritis, pain, can walk a little. No one found that weird, prayed over me, acted like I was somehow too young to be disabled or wasn’t disabled enough or performing it correctly, or told me about the fish oil homeopathy their grandma’s friend does, or stuff like that, as I encounter almost daily…. People also were universally quick to explain the details of access or tell me good places to go that were relatively level. The dynamics of that very pleasant courtesy and thoughfulness may be also due to my being a rich tourist in a not very rich area that depends on tourism. I could not help but notice it though. Thank you nice people in Akumal and Tulum.

In general the whole trip was physically challenging for me (how not — I can barely do the laundry or get out of my house to get groceries in my own town!) and yet it all seems very possible now. I would feel confident going back on my own. My goal was to find a place where I can have a real vacation, not traveling by going to tech conferences or things for work, ie traveling while not only doing my regular job but also conference talks and attendance! I think that kind of travel is at least something I shouldn’t try to do for the next year or so. Or maybe ever or very rarely. Maybe that time has passed. I like traveling and I love conferences and the intensity of meeting tons of people quickly and also I love public speaking. But it has not gone well for me the last few years as my mobility is worse and pain levels through the roof. So, Real Vacation. What a concept!

Feel free to ask me questions about access in comments and I can try to answer! I hope this helps someone out when they are wondering what might be marginally accessible on the Quintana Roo coast.

And in undercurrents, violence against women

Some of the things I read today. Sometimes you look at the news and, damn.

Famous dude doxxes some trolls

* Former MLB pitcher, 38 Studios founder doxes his daughter’s online abusers
* Curt S.’s blog post about it all
* Daily mail article about the same thing

I would like to add to Gabby Schilling’s statement that ‘No one should be able to get away with saying those things to a father about his daughter.’ OK I can roll with that if I translate it 8 different ways in my head, but no one should get away with saying those things to anyone about anyone. And this should happen to exactly no one, nowhere, ever, in public or private.

Plenty more to say about how Curt Schilling handled this. Short version: Compare what happens when this dude doxxes people who say misogynist shit, to what happens when women report harassment against themselves. Extra bonus, all the framing of ownership and protectiveness and patriarchy and threats and jokes just makes it worse in some ways, even though I appreciate anyone fighting misogyny and harassment, it’s like, oh did the entire history of women defending themselves and each other just never happen? And I’m supposed to care more about this girl more than other girls because she has a dad and a boyfriend? Oh ok. OK whatever man.

Oh also noting that news article give the real names of two of the harassers, and it should not be hard at all to find the names of the rest of them. It isn’t like they tried to be anonymous or anything, it was just routine behavior for the lot of them.

University health records aren’t private

* University of Oregon doubles down on a rape survivor who sued them for mishandling her case. Educational institution medical records aren’t covered by HIPAA. I had no idea. Horrible on top of horribleness.

Students: Don’t go to your college counseling center to seek therapy. Go to an off-site counseling center. If, God forbid, you’ve been sexually assaulted, try to find a rape-crisis center.

So that pissed me off.

Ferguson Police Department are horrible

* Surprising no one, Ferguson Police dept. shows some very racist patterns of behavior and sends some stupid racist emails.

Smokin’ in the Girl’s Room

Some a-hole named Michael Rosner (who has not heard of the Streisand Effect) in Baltimore has apparently started a civil liberties complaint. Not sure what this means. An actual lawsuit? If so then I look forward to reading this ridiculousness in PACER and putting it straight into RECAP. He seems to be part of Baltimore Node, a local hackerspace, and is one of those people who are the self-appointed photographers of tech events. In a sadly now deleted post on some Baltimore tech group’s Facebook page, he compared himself to Rosa Parks. A+ drama and ludicrousness.

The repugnant thing of course is the chilling effect this kind of thing can have on other groups who want to hold events. I have certainly spent years hearing people say in meetings, “Oh but what if someone sues us for being reverse sexist/racist” etc. and not only can they fuck off, the people who actually get to the point of litigation can fuck right off and go start their own damn coding club.

First prize for douchebaggery goes to a poet

You would think that is enough for one day. And yet we have more!
* Poet Greg Frankson sues peers for more than $300,000 for libel and defamation
Dude, Ritallin, this isn’t how it works. You aren’t supposed to piss off the bard because the bard can write a scornful poem about you. Go write a scathing spoken word piece! Lawyers? Really?! Weak. Oh well! This is why the 21 women wanted to be anonymous in the first place. So that your punitive and extra harassing lawsuits wouldn’t screw up their emails with subpoenas from now till forever. So, apparently he was banned from some poetry organizations and events because 21 different women reported incidents of sexual harassment and assault. Frankson is now suing some of the people involved, and they’re now fundraising for their legal defense.

Politics and policy

I strongly think that reporting and witnessing harassment and sexual assault is political speech and should be protected as such. Anti-SLAPP law should protect us from these punitive defamation lawsuits. At the least it seems a reasonable defense. There is a long history, not over obviously, of violence against women and in particular sexualized violence against women, and backlash against reporting it. (Or prior restraint stops anyone from publishing it for fear of being sued, even when it’s true.)

It is extremely important that we fight on a legal and policy level against chilling effects to our free speech. I also see these lawsuits as having an effect on our ability and right to organize politically. If we can’t tell each other who raped us, how can we fight? In order to protect that right I think we also will need organizations and legal help that will keep our right to communicate privileged information to each other. But that is not all since we also need public disclosure for our activism. The legal definitions of harassment are centered around work environments and the responsibilities of employers to protect their employees.

While I am ranting, I see this as part of a horrible trend to privatize all the functions of a civil society. Having a job in a particular way should not be the precondition for having health care, a hope of a sustainable life in old age aka “retirement”, other basic needs of life, or, legal protection from abusive behavior. Our right to participate in public spaces should be protected. Not just in “workplaces”.

India’s Daughter

Let us look at one more spectacularly hideous example of pushing women out of the right to public life. All the content warnings or trigger warnings possible on this one….

I also read Leslee Udwin’s statement about interviewing some of the men from Delhi who raped and murdered a woman on a bus. There is heartening protest and activism against this sort of attitude as you can see in the many other articles about “India’s Daughter” but it is clearly also not just the rapists who think this way about their right to do whatever they want to women.

I am not trying to equate harassing people on twitter with rape and murder, I am saying that they are facets of the same oppressive attitude and power dynamic reflected. And that one underpins the other. We need to fight all of it.

A good book if you like books

On that note I have a book recommendation: Framing the Rape Victim: Gender and Agency Reconsidered by Carine M. Mardorossian. About the book:

Contesting the notion that rape is the result of deviant behaviors of victims or perpetrators, Mardorossian argues that rape saturates our culture and defines masculinity’s relation to femininity, both of which are structural positions rather than biologically derived ones.

And a bit I highlighted from the book:

We need to understand that the will to dominate is not an expression of free will or of a subject bound to gendered expectations that have turned the will to dominate into identity itself. Indeed, the failure to dominate produces a “terror machine” because it threatens the subject with complete annihilation: once one subscribes to the tenets of this identity-making machine, one is nothing if one does not dominate.

This book connects and clarifies sexualized violence and its role in many forms of oppression. “All violence is sexualized violence.” Food for thought.