New cyborgian exo-wheels

Still loving my TravelScoot over here but I am excitedly waiting for delivery of a Whill-Ci powerchair.

It seems relatively lightweight, enough so that in a pinch, I could take it apart and with help get it into the trunk of a cab. We’ll see how I do on the bus.

For everyday around my neighborhood, I hope it will increase the range I’m comfortable going, and that I will still be able to maneuver in small space. I used to go without too much worry to, say, 24th street (1 mile) or to Noisebridge (more like a mile and a half). The last couple of years that seems harder to me, and I tend to take the bus instead. Either I just have more trouble sitting upright that long without back support on the scooter, or, the jolting of pavement is too much, or both. Hoping the CI will help with that.

I tried it out at the Abilities Expo and liked it.

liz-whill-ci

My fears are: What if it just isn’t that comfy for city trips of a mile or two? What if it is harder for me to deal with on the bus or on crowded buses? It will be harder for me to decide to take a cab by myself, without someone with me who is willing to take it apart and shovel it into a cab.

And last but not least I am afraid it is going to “talk” to me or beep annoyingly. I cannot think of any situation where I want my chair to beep or talk. So, I forgot to ask but I’m hoping the phone app will let me disable or mute that. If not I’ll be investigating how to make it stop by taking it apart.

It’s an expensive experiment. I’ll report back on how it is in daily use!

Disability Intersectionality Summit 2018 (Bay Area)

This week I’ve left the house every day. Something to celebrate as I’ve spent a couple of months at home. Saturday, I was SO excited to go to the DIS2018 Bay Area event.

Danny and I took the bus and BART over to the Ed Roberts Center. This was nice in itself for me because I like taking trains – and at the BART station plaza we caught a few songs from the Cuban music group Orquestra de 24. It was hard to tear away from that, but they are there every Saturday. The crowd there was having a lot of fun.

On to describe the event and then some of my thoughts about it!

The Disability & Intersectionality Summit (DIS) is a biennial one-day conference that centers the experiences and knowledge of multiply marginalized disabled people such as, queer disabled people of color, undocumented transgender disabled people, or formerly incarcerated disabled people among others. This conference serves as a platform to highlight the multiple oppressions that shape the lived experiences of disabled individuals, as told by disabled people, in a setting organized by disabled activists. DIS aims to create dialogue on how our society must address systemic oppressions using an intersectional approach.

I missed the morning keynote by Mia Mingus but will watch it later on video. (her talk starts about 21:45)

Makers Faire: I only had a few minutes for this, but I bought stickers and zines from Danchan – beautiful, cute, healing. The messages conveyed by her art are in a way something I have been feeling the lack of, so I was instantly just so happy – this is hard to express. Some of the Stay Home Club things give me a similar feeling but these hit the spot more exactly – to encourage & celebrate love and care from this particular perspective. That it is a radical act to care for ourselves and each other. “Vulnerability” – a person in a hoodie holding their arms in the air with a rainbow above; “Hold Each Other Gently” – hands cupped underneath a box wrapped with caution tape; “Stay Loving Stay Angry” with a dagger through a heart. I also liked (and bought) a flag with a blockprint of a powerchair and “SMASH THE FASH” from FatLibInk folks, and some small prints from Mchhim (I can’t find their info but a sticker that says Your Luxury Is Our Displacement and a flower with the roots exposed).

stickers

At another table I picked up a flyer of Sins Invalid’s Access Suggestions for Mobilizations. Sins Invalid also has a very good Access Suggestions for Public Events. I recommend them both. Maybe your organization or event can’t manage all of these things, but the ones you can, you can explicitly SAY that you are planning to provide, in your event information, invites, announcements, and so on. Making that information easy to find, ahead of time, is an important part of access and inclusivity. At least, by providing the info, you’re signaling very clearly, Less Bullshit Than Usual maybe and that you have thought about & worked towards access. The detailed, granular information you provide is part of the accessibility! Basically when I see simply “Wheelchair accessible venue” on an event description, that’s nice, but one, I can never believe it, and two, it doesn’t describe what I need to know.

I also picked up a beautiful postcard with the cover art for Alice Wong’s upcoming anthology, Resistance and Hope: Essays by Disabled People. “Crip wisdom for the people.

The first afternoon talk was Resistance & Hope: a dialogue Alice Wong & Stacey Milbern – moderated by Robin (@sexabled). While I was kinda hoping for one sort of discussion, we got another, just as good or better.

Alice opened by describing her fear, pain, and anger from the 2016 elections, and how she reacted by wondering what she could do best to foster resistance and hope. Her work for the Disability Visibility Project & for this anthology to be a source of hope in creativity.

Stacey then talked about finding hope in the midst of despair; part of that is in the imagination, imagining and creating ways for us as disabled people to lead resistance. Specifically, for queer/trans/POC disabled folks to lead. For example, within disability activism and communities, we can imagine, what if this movement was led by people with intellectual disabilities, people with mental illness? Once we imagine that, we expand the boundaries of what is possible.

Alice mentioned something I deeply believe, that the people at the margins know the systems they’re in the best. (An idea I first began to understand from Gloria Anzaldua, in the 80s.) In daily lives, we have to fight and resist for so many things, so that something like having plastic straws or riding public transport is part of our resistance. We are struggling to be in public space, as part of our survival.

I appreciated the fun moment where Stacey described Alice as “futuristic”. She said that you can see organizations, non profits, and so on, scrambling to figure out how to use social media. Alice creating the Disability Visibility Project is a good example of using technology effectively – that’s the futuristicness. (Or, think of her with the telepresence robot at the White House!) Consider, from the constraints under which you operate (this is me not Stacey) what you then make happen. To me, that’s part of what it can mean to lead from the margins and why it can be effective. As an important part of that concept, we must challenge the presumed whiteness of disability be centering people of color in the disability justice movement.

Alice responded to Stacey’s talk of being futuristic by saying she likes to think of herself as an alien cyborg. (Darth Vader is a much misunderstood disabled character.)

I hooted appreciatively. Ah, I love them both! And us all! Me too! Cyborg & proud! Alien love! Science fiction is a revolutionary force! Queer feminist cyborg power!! *Explodes from enthusiasm*

Stacey and Alice then turned the discussion to ask the rest of us in the room, What do you resist here in the SF Bay Area? What gives you hope and strength?

I did not always catch who was speaking but did hear, among other things,

* Lily talked about doing the work to create a beloved community
* Brotherhood with neurodivergent men of color who are living on the street, as good resistance work
* Monique talking about struggling with inaccessible bathrooms in the Bay Area and also, that people underestimate the intelligence of others in centers ie, in institutions
* rent
* inaccessible parking
* white supremacy and patriarchy
* categories and labels that block connection to humanity
* ableist public schools
* Sanjay says he resists people who grab him and pray on him in the street and, when ppl say they’re ignorant about disability but they all know someone disabled, they just aren’t listening to or paying attention to their own friends and family
* Reactivity, anger and argumentativeness from someone who says she is trying to educate more patiently on a daily basis
* Academic elitism and snobbery
* Gigi talks about pee in the broken BART elevators and her desire to travel the world. Airlines break our chairs so it’s too risky. Technology and social media give her hope, keep taking pics, report, fight, share.
* Lateef (https://twitter.com/kut2smooth) spoke briefly and passionately about the damage done to us. While I didn’t capture it precisely I had the impression that he had plenty to say that I want to hear. So asked him afterwards for his info – I now see from Lateef’s site that he is a poet too. Poets know! You can buy his book, A Declaration of A Body of Love Poetry – I just did.

I liked how Stacey, Alice, and Robin, Allie taking the mic around, and others, made that space for many people to speak and be heard by everyone in the room. All too brief. Claire made the point at the conference’s closing that this is just a glimpse of each other and we can work over the times to come to make sure we keep in touch and nurture the new connections we’ve made.

Along with others at the DIS2018 Bay Area gathering at the Ed Roberts Center I then watched the closing keynote by Anita Cameron via video streaming from the national event. Anita gave a broad overview of her 33 years working with ADAPT. Kinda 33 years winding up to “How do I bring my full self to this fight?” including blackness, being a woman, a lesbian, all my experiences and identities and anger, to the disability justice movement? The “how” is a long answer too long for a talk. It’s ongoing work, it’s more than having a couple of meetings. It was Mike Brown’s horrible murder in Ferguson that sparked Anita’s re-evaluation of her engagement in ADAPT.

I was thinking from that and previous discussion how hard it is to capture the complexities of these answers. Past the basics, what do we actually do? It is a process of gaining wisdom and experience. We can indicate some ways and truths. We can say things that might sound simple, but hold a world of meaning for your thoughts and actions to explore. Expecting a full explanation in this context is like wanting the content of a person’s life to be poured into your brain. (If only!) This is why we have conversations over time, and novels, and movies, it’s why we have stories, because stories are one of the tools, the main tool, we have for this purpose.

Supporting POC-led events and organizations is super important. For me, it is the logical thing to do. It is often impossible to move an existing organization, or, not impossible, but it is definitely never INSTANT, it’s a long term process. There are many inherent pitfalls in that process (like for example tokenizing people). Personally I will never (again – I did at least once) start an organization run by only or even mostly white people, it just does not work for me, it is too flawed, and I don’t like how that unfolds. At best I think once that happens you can partner with other orgs, in a support role.

While I mention POC led organizations let’s name one, I recall someone referring to it and to Talila Lewis on stage yesterday but not exactly what they said. You might have a look at HEARD. A good organization to support. As you may know, when police in this country kill people, over half of their victims are disabled and they are disproportionately disabled people of color. The violence of the prison system is a perpetual horror and we have to fight it on every level.

Helping Educate to Advance the Rights of the Deaf (HEARD), is an all-volunteer nonprofit organization that promotes equal access to legal system for individuals who are deaf and for people with disabilities. HEARD primarily focuses on correcting and preventing deaf wrongful convictions, ending deaf prisoner abuse, decreasing recidivism rates for deaf returned citizens, and on increasing representation of the deaf in the justice, legal and corrections professions. HEARD created and maintains the only national database of deaf, hard of hearing and deaf-blind detainees & prisoners.

On holding space open. While I appreciated aspects of everything people said in the “discussion” part of the afternoon, I also think white folks might stand to listen more, and help to hold space more, rather than taking that space. We all need space to speak. Do I have plenty to say on these subjects? Yes obviously, LOL. Did I need to speak in that process, no I did not. I have massive privilege and opportunity to say what I have to say. That time is better spent literally listening to whatever the people have to say who have the most difficulty. Even that one weird motherfucker who went on about his spiritual wife. OK man we’re holding space for you to be your own glorious weird-ass self. That is also what it is for. Now, I’m sure everyone has their struggles and maybe it is particularly important to hear from Brother Berkeley McWhiterpants about his allyship in the very middle of an event centered on and run by people of color but…. Come ON. (end mild rant)

So I am left with the thoughts of the concrete actions I am taking (and that I support others in doing) For me a part of that is to look around me for people to connect with in my neighborhood. I talk about mobility issues and other struggles with people I just run into. And, I try to balance my financial support between organizations and individuals, who I know and who are strangers to me (which I think is important, as if you only share resources with the people you are already friends with, that just keeps whatever systemic patterns exist in their same patterns.

The structure of the event at the Ed Roberts Center was interesting in itself.

The stage too was a nice thing, though I would have liked it to be a bit higher, it had a broad ramp integrated with it so that it wasn’t a tedious process for folks to get on and off the stage.

stage with a broad ramp

I liked the MC-ing by Gigi and Claire Light. Claire led some moments of pausing and breathing, something I’m not great at doing, especially in public (because it means listening to my pain instead of blocking it out, and I don’t want to cry or whatever), but I think it was a good thing for many people in the event and a good idea to make space to ground ourselves. There was also a quiet room available. Towards the end of the afternoon I just got on the floor against a wall and laid down to listen and felt zero worry about other people’s opinions of that. (Something I’ve often done when I’m just that much in pain and tired, but don’t want to go home, I’d rather be able to participate, but others are uncomfortable or it breaks various social rules, and yes that’s why some folks have reclining wheelchairs or maybe I’d be better off staying home but, I can get up and down off the floor and it’s RIGHT THERE.)

I immediately had a wild surge of happiness at being in a crowd, without being crowded and trapped. The space itself was arranged in an open way, with tables spaced widely, and plenty of flexible area for use. Within that space and on the nice smooth floors, others were zipping about, I could hear their motors or appreciate the visual nearly silent, quick motion as they (we) rolled around the room. It was like the pleasure of watching swallows in flight. I thought of specific moments like being at Hamilton Pool near Austin, a limestone sinkhole over a large pool of water, with hollowed out, round cliffs, the mud swallow nests clinging to the cliffs 70 feet overhead and the birds darting in complimentary shapes to the arc of the inverted bowl, not acting together as a flock or a swarm, but each in pursuit of their own invisible goals. (Bugs.) Often, in a crowd, like at a conference hall or hotel, I zip around and, especially if the floor is smooth, I feel something of that pleasure of motion. It means having to be mindful of others in a particular way, that ideally includes my modeling of their ability to predict my motion and trust that I am competent. So, it is rare for me to be in a space like that and feel real joy in motion – It has to be open enough and non chaotic enough to allow for our normal motion not to scare people (whether they have good reason or not to startle and freeze or even leap away, as they do). Maybe the Dyke March and its attempts to hold space open between the main banner and the trolley and sound truck for wheelchair users. What I’m winding up to is that I’m often the only wheelybot in group spaces, so it was a specifically embodied pleasure to be not the only one but more than that, to feel so beautifully comfortable in my own erratic orbits alongside others zooming around. It filled me with joy.

Saw so many friends, met new people, haven’t been so excited about being at a conference in a while.

And, final plug for the Disability Visibility Project. Podcasts, a stream of excellent Facebook posts, Twitter chats on #CripTheVote, #CripLit and other topics. Add them right now to your social media of choice and follow along – you will be sure to learn something & have your world expanded.

liz holding smash the fash flag

Quick fix for my scooter

Yesterday taking BART over to the East Bay I realized not for the first time that my scooter seat is too low. One of those items on my list of things to do for months: measure the post and see if I can easily take it off and replace it and figure out where to get that exact size of metal post. My leg is doing that thing where electric shocks buzz down it every few seconds. Sometimes sitting up in the wrong position sets it off and a cascade of weird back spasms means that one or both legs are basically in hell.

I went to a tiny bike repair shop down the street from me, Heavy Metal, where I heard they are friendly about wheelchair repair. The guy there worked with me to get the post off. It was surprisingly tough; there’s no way I could have done it myself! After a bit of knocking it with a hammer we clamped it back onto the scooter base and then were able to lift the seat from the top of the post. As I hoped, it was a standard diameter. He had perfectly sized replacement post just lying around. But if not then we could have cut one down shorter.

seat post for scooter
the new post is much longer

Now I have a lot of flexibility in the seat height. My knees aren’t over bent and my back is straighter in the chair. I feel a bit taller talking with people who are standing up, and that much more visible to drivers while I’m crossing the street.

If you look hard at the picture you can see I have sprinkled the scooter frame, battery, and seat back with blue and white “accessibility” logo stickers. (You can get them pretty cheap on ebay or amazon). I think this has helped a little bit to get across to random strangers, bus drivers, and so on that I am not riding a hipster toy for fun.

Also crossed off my giant to-do list: made a dentist appointment, made a pain clinic appointment, scheduled delivery for new mattress. Not yet crossed off: Take some painkillers and a nap.

travelscoot-jr
a small mobility scooter

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.

What I did on my Portlandia vacation

Hello from SUNNY PORTLAND! It’s gorgeous here. I’m enjoying scootering all over town, seeing friends, eating delicious food and loafing around with Danny.

I spent Friday with Selena and her awesome cute baby and her cat Funny. We talked about a million things and had coffee and doted on the baby. I do love babies!!! We talked about work and general stuff about our lives, feminism, children, and so on. I gave her a whole bunch of zines from Double Union. I also finished reading an academic paper on feminism and programming and culture clashes by my friend Luis Felipe which delved into many of the implications of the C plus equality parody/impersonations and similar instances of aggression by way of parody code. I look forward to its publication . . . I also worked on getting some of selena’s code up and running and we talked about ways to extend it for other uses and the indie tech/web decentralized-everything shift or course correction in how people are thinking about making tools these days.

Pambla lizzardLiz birdnerd

Both the baby and I have saucy tshirts on. Mine says “Macho Pero No Mucho” and the baby’s says “Bird Nerd” as she is clearly destined to be a future birder like her parents.

Then went to the Mozilla office to say hello to Lukas’s Ascend Project students. There was not much time to do a lot other than say hello and drop off my stickers. They were making stuff with Webmaker and pushing/pulling/merging to their git repos. It looked like a lot of fun and like the class had good cameraderie. I talked with Dino as well about the upcoming Ada Initiative ally workshops.

Then got a cool email from the State Department. How often does anyone say that sentence? Weird eh? They have a delegation from Egyptian hackerspace organizers and teachers who want to come visit Double Union and talk about making hacker and maker spaces for women. This made me super happy!!

Danny and I then went to the Wieden Kennedy office which was hosting a party for the XOXO Festival. I have been in there before but only remember it dimly; it was very pretty. We hung out in the “Nest” which is hard to describe. The center of the building has high ceilings and walkways across it. On one of the walkways there is a hangout space with …. giant twigs all around it so it’s like being in a nest. The couches are fuzzy grey and and look like rocky outcrops with boulder pillows. It is 100% awesome. Robin and Dan Hon’s tiny kid sat on my scooter saying “vroom” for like, an hour and dinging the tiny bell on the handlebars. Apparently he had just spent a weekend recently getting to ride on tractors so his life is fabulous. He taught me the sign for “bike” and “motorcycle”. I not only like babies I really like tiny children (At least when they are not screaming or covered in body fluids.)

The rooftop party was also very relaxing, it was sunny, people were super friendly, I saw Tim and Pamela and Evan P. and Kanane and tons of other people I know while we ate, ok, the hipstery-iest ridiculous food: deviled quail eggs, chocolate covered (peeled) tiny apples on sticks, homemade marshmallows with candied lychee, can’t remember what else. Cocktail that tasted like a sweet-tart with dragonfruit in it which looked disturbingly like a tentacle. I enjoyed all of this greatly. The rooftop was decorated with tiny succulents (or epiphytes) in glass terrariums which reminded me of the brilliant design-critique tumblr Fuck Your Noguchi Coffee Table .

Xoxo dragonfruit

Xoxo tinysucculents

It was amusing that part of the “festival” for XOXO was going to different tech company offices. I would have gone to the Slack one but the timing didn’t quite work out. It reminded me a little bit of the vibe of BarCamp Block but less unconferencey and much more luxurious. At BarCamp Block we persuaded 9 different tech companies in downtown Palo Alto to let us use their office space over a weekend for our decentralized unconference. We made a mesh network specially for it. It was lovely… Anyway, XOXO felt very decadent. I have ambivalent feelings about it even while enjoying it greatly.

Pambla lizzard

We then checked into our airbnb place and had dinner and took a cab to the Yale Union building where there was a night of video gaming and demos which sounded right up my alley but unfortunately the building was not accessible. Danny went up the stairs to scout for me, ie, to see if I should give it a try to go (painfully) up the giant flight of stairs while he carried my scooter, or, if he could find out if there was an elevator. Meanwhile I scouted around the outside of the building. There was a ground floor entrance with a phone number to call for access which implied maybe there *was* and elevator so I called it but it went to voicemail. After hanging out for a while at the foot of the stairs talking with friends I found that there was some bustle and consternation perhaps about no one knowing how to make the elevator work or unlock it or find a person who might have the key to it. From Danny’s description of the elevator it sounded like one of those murky freight contraptions that I should emerge from with a fog machine generating a cloud to make me look like a special super villain. We decided to move on to another venue of the conference, the main one called the Redd Building.

Xoxo yaleunion

Xoxo redd

The Redd Building is gorgeously industrial. I liked the patio with its cubist-ish mural, awkward tables and mural-echoing sunshades. This whole bit of town reminds me of Austin from 25 years ago. Lots of brick buildings and patios and beer. Less trellises with xmas lights. (Are trellises with xmas lights on outside patios still a thing in Austin bars?) I gossiped more with Robin who told me about an ARG she worked on where you learned about art or art history by pulling off a (staged) heist from an art gallery and then forging some paintings. It sounded amazing! EVERYTHING SHOULD BE LIKE THAT. The actual talks did not appeal to me as I do not care about tv shows so i hung out in the pleasant outside patio with food trucks talking with people for a while then we went home & I realized I had been running on tramadol and coffee fumes for most of the day and collapsed into bed whimpering in pain and taking ALL THE POSSIBLE MEDS. My left ankle feels worryingly fucked up. I hope I don’t end up in a boot again. The pain is also intense down my right sciatica line-of-horror and messed up peroneal nerve but that will wear off over the next few days from the injection earlier this week, I trust. The other day someone I have known for a while went, “wait, are you actually in *pain*?!” Uh hahahaha yes. I thought that everyone knew that I am in constant pain and it is just an endurance game of how long I can power through it and stay good tempered and have intellectual focus. I also feel like I whine all the time about pain and exhaustion. Apparently this is less apparent than it feels. We should all have fuzzy red halos around us like in video games so it can be apparent who has the fewest hit points or constitution is low or whatever.

Morning renewed me somewhat, so with my trusty holster of fucking Tramadol by my side, I went out to hack some portals and find a nice cafe while D. stayed asleep which is his ideal vacation (and our usual pattern when traveling). I admired a lot of bulidings. I think bricks are beautiful. They often seem so human. However they were manufactured you know they were laid down by hand by a person and often by people who thought about creative ways to design a wall or a window archway or put a pattern with different colors or sizes of brick. San Francisco does not have a lot of creative brickwork. . . . I also just love the warm vivid colors of brick. Check out this stone and brick wall with a planter with horsetail fern. It did not have to be beautiful and yet it is! Someone loved it when they made it and it is clearly still tended well now. I like aesthetics that manifest appreciation and love in a space.

Portland greywall

The cafe I was aiming for is called Commisary; its yelp reviews mentioned light and fluffy scones and good coffee. I have nto been drinking coffee because of my recurring gastritis but I figured this weekend I can go off the rails a little. Therefore, if I’m going to break my no-coffee rule, it has to be DELICIOUS coffee. The cafe has cute outside tables and a pleasant atmosphere. When I rolled up there was a step which made my heart sink a little. I can manage to over it but it usually just feels depressing or sad, it is awkward and a bit painful for me, and it perturbs other people who express their freaked-outness, worry, or discomfort with disabled people by acting very annoying towards me in a whole range of possible ways. I also have a sad alienated feeling like no one gives a fuck when I encounter a barrier like this even if I personally can negotiate the barrier because someone with different impairments than me will not be able to and no one cared to think about that. Steps are like a huge fuck you. Then… yay…. behind the planter there was a tiny ramp. This is actually a very lovely and clever ramp design. I’d like to see more entrances like this! The one thing that could improve it is a handrail on the “step” side for people who need steadying while going up a step and for whom ramps are harder than steps. My minor angst was assuaged. I felt very happy while enjoying my scone and coffee. It started to really feel like a vacation. No responsibilities and no one expecting me.

Portland caferamp

I had also scoped out another cafe that is INSIDE A BIKE SHOP. Oh yeah. I figured it was worth a look because often I can find perfect scooter or wheelchair accessories in a bike shop. I have also been looking for someone with decent machine tools to cut the bar that holds up my scooter seat back to shorten its distance from my back and lower it. Well, thank you Portland bike scene because Western Bikeworks is the most fabulous place. I didn’t try the cafe but I got some nice new wheelchair gloves, very dapper, and a cup holder, and a thing to strap around the scooter back to hold my battery charger while traveling. The sales people were all super nice. NO one acted like I was a weird intruder with astonishing never before thought of desires for bike stuff to bolt onto my wheelchair. One of the mechanics in their shop sat with me to have a look at the seat back. We talked it over and he cut some lengths of the metal bar off and drilled a new hole to hold the spring clip and set it all up beautifully for me. Thank you Doug, you’re a rock star! My chair is so much more comfortable now!

Portland bikeshop

Portland scooter

I’ve been talking with April from EFF and my friend Zach about holding another hackability night for wheelchair, scooter, and mobility/access gadget hacking and modifying, but this time at Bike Kitchen while also inviting bicyclists and bike mechanics. This should happen soon!!!

Though I am not heavily participating in xoxo I have a critical observation of it, beyond my usual eyerolling about lack of accessibility. I was expecting , and willing to put up with, uncertain or bad accessibility. The thing I didn’t expect is this: It’s been like going back in time for me to a tech conference from 15 years ago where it is a total sausagefest in a deep way. It is not just that there are way more men than women. It is that the men I’m meeting and talking with though they seem mostly quite nice and interesting, are talking to me and the other women around me as if we don’t do anything interesting, creative, technical, or amazing ourselves. I am spoiled by years of San Francisco and feminist activism and choosing to be in spaces where I am respected. But, I haven’t been treated like that or seen other women treated like that for many years in this kind of context. It is a pervasive assumption that I must be here to be a fan, or in a support role, or because I am just a passive consumer of whatever amazing things ‘independent tech” men are doing. You can’t fix this by inviting a couple of women on stage, at least, you can’t fix it right away. It reminds me of pre-2005 SXSWi and I found that just astonishing. What the heck. So, I feel like a time traveler or an anthropologist on Mars. I would far rather hang out on the fringes with non-douchey people. It is not even that people are horrible it is that their deep rooted assumptions are showing. It’s so embarrassing. They are only focused on themeselves or other men who they consider capable of being Important. How ludicrous! How sad! How much they miss out on! The harm to our civic creativity! The loss to society! The damage to the emotional and creative wellbeing of the women around them! As usual, that Marge Piercy poem comes to mind, where she realizes the sexism of male poets and philosophers and decides to go hang out in the kitchen instead where things are more interesting. I am sorry to make anyone sad by these observations but I gotta say it because like 500 women in various portland scenes will be reading it thinking YES EXACTLY ALSO WTF and I care more about what they feel and think than about hypotheical dudes being defensive or explaining how they cannot be sexist because they have a daughter and mean well, etc. etc. bingo, etc. etc. etc.

Quote of the day: “I have something to say about this whole “Maker” bullshit. I made a human. OUT OF MY VAGINA.” Now there is a creative endeavor. LOLZ!

This long chatty blog entry brought to you by my need to rest in bed for a good long while before going out again. To downtown Portland now to fool around and maybe go to Powells Books and have no real destination for a while. D. is having more of a day in bed as he does not feel very well (as is often true, of the two of us he is in many ways more impaired than I am ) And I think we will meet up in the evening at the Redd building and figure out what’s happening there, music, games, maybe wrangling someone to unlock that dammed freight elevator . . . . Peace out.

Taxis who refuse wheelchairs

I enjoy coming to Portland and taking the awesomely accessible train from PDX airport to downtown, but I got in a little late for my conference dinner, so, figuring it would save time, I headed to the taxi dispatch line to get a cab. I was traveling by myself, with my manual Quickie Ti wheelchair and a backpack.

The taxis were about halfway up to the first taxi position, and the dispatcher motioned for me to get into the first one in line, a Union Cab. The driver shook his head at her, then at me as I asked him to open the trunk of the taxi. “I just need you to open the trunk, the wheelchair folds up and I will put it in.” He refused to take me as a passenger. The dispatcher was angry with him, but he ignored her and pulled up a few more feet, taking another passenger who arrived at the stand after me.

The second driver in line was in a Green Cab. He had a big white bushy beard and was wearing sunglasses and a large black floppy hat. He looked right into my eyes, shook his head, and waved his hand dismissively as I asked him to open the trunk of the taxi. The dispatcher also was unable to persuade him to open his doors or trunk. That guy pulled up and let someone else and their luggage into his cab.

The third driver was outraged at what he had just seen. He got out of the taxi, and helped me put my backpack into his trunk. I took apart my chair, which has quick release wheels like some bicycles, and folded down the seat back for us both to put the pieces into the trunk of the taxi. This driver asked the dispatcher from the airport taxi stand to report the first two drivers. I said that I would write down their information and report them. I got the cab companies and numbers, but not the license plates. As we pulled out of the airport, we actually caught up with the two cabs that had refused to take me as a passenger, so I was able to double check their cab numbers.

The nice driver was from Broadway Cab. He pointed out the phone number for the City of Portland complaint line, and was very supportive and helpful. He said that to his knowledge, the first two drivers have done this in the past because they think that wheelchairs will take too much time to deal with. Talking with him was so heartening, a good reminder that there are plain old decent human beings around who will treat me like a fellow person although we are strangers.

From my conversations with other cab drivers and bus drivers, there are other assumptions that they tend to make about wheelchair users or people who have a visible disability. Drivers may be angry at me before I even get into a cab or bus, because they are afraid I will take up their time, be unable to get in or out of the cab, may somehow injure myself and sue them, or whatever. If I try to hail a cab on the street, it usually doesn’t work. I have to ask someone else, even a total stranger, to hail the cab while I hide out of sight. This is part of why services like Uber and Lyft work well for me, while I’m lucky enough to be able to afford to use them. I can leave my house with my manual wheelchair, travel, and be confident that I won’t get stranded by bigotry.

As it was, I only had wait a few minutes for a nicer cab driver, and things turned out fine. However, I do get angry about cab drivers who won’t stop for me. The prejudice that I get isn’t going to get any easier for me as I get older, so I try to take the time now, while I have the energy (and the privilege) to report discriminatory behavior.

I just reported them through the City of Portland’s online complaint form and to the cab companies. The city emailed me back immediately to apologize and to let me know they were addressing the complaints. Both Green and Union took my phone complaint and said they would investigate and likely reprimand the drivers.

Since I benefit daily from the activism of people who hard core chained themselves to buses in the dead of winter in the 70s and 80s, I figure I can spare an hour to try to make sure that current ADA law is enforced. I also think of places like New York City where activists are fighting hard to get the city to make all taxis accessible to more wheelchair users.

Tiny scooter test run

Last week I got a new tiny mobility scooter. It is 35 lbs and easily disassembles and folds. Here I am out on my birthday at Pier 39 after a ferry ride with friends!

Liz travelscoot pier39

It is a TravelScoot Junior Deluxe, ie, the version for short people or children, and with a lithium ion battery. About a third of the cost of the scooter is in this battery. The “Junior” size is pretty good for me. I’m 5 foot 3 which is at the top of the recommended height. I went with the smaller size figuring it would be easier to handle while I was folding it, and also because the Junior size has 2 inches less width than the regular model. So, in theory I can fit through doors 24″ wide, same as with my manual wheelchair.

Assembly of the scooter was easy. It took under 10 minutes. The assembly instructions were slightly different from the manual shipped with the TravelScoot Junior. There was a little supplement that showed how to position the battery upright in the back for the “Junior” version.

The battery fastens on with velcro and is easy to plug in and unplug if you have good dexterity. I am mostly doing this while sitting on the ground — or I can do it leaning over from the scooter seat. My only quibble with battery setup is that I can’t charge the battery without taking it out of its tray, because the charging port is blocked by the side of the tray.

I put a Crampbuster on the throttle so that I can control the scooter’s speed without constant gripping, which would be hard on my arthritic hands.

Comments on driving the TravelScoot Junior:

It coasts down hills. The brakes work fine. Easy to drive. Reverse works well, and is nice and fast. Acceleration is slow whether you are reversing or going forwards, but not too slow. This takes getting used to. My phone’s speedometer hovered around 4-5mph as I zoomed around. It is a little bit tricky to match paces with a walking person. To go slower than the max speed, I have to squeeze the throttle exactly right. If I let up the pressure the scooter slows down.

There is no parking brake so if I pause to mess with my phone, I need to park carefully. This is quite annoying on the bus, but I can still handle it. It means that in order to ride the bus with any ease I will need to rig up some kind of parking brake!

There is a slight tendency to “drift” or stutter sideways a little bit when going fast on a bumpy street or sidewalk. The undercarriage clearance is fantastic. I could probably hop a low curb in this. (Slowly)

I would like to customize or get a new back support as it is a little too high up and far back to support my low back, which needs it! It may be possible to just swap out the entire seat. It is a standard pole with clamp assembly, like for a bike seat.

So far I’ve put this in the back of cabs a few times. I like that I don’t have to ask a random taxi driver to help me lift a 95 lb machine into his trunk. Instead it is something I can easily lift myself.

It would be good if I made a special padded battery carrying case, like a battery messenger bag, for when I need to put this into a car. TravelScoot owner manual suggests a padded lunch bag, but the battery I have is too long/wide for a lunch cooler bag. Here is a good craft project for my hackerspace. If I make a battery carrying case I’ll post its design on my blog!

I have also successfully grocery shopped with two backpacks and a large bag. One backpack hung off the seat back, another from the handlebars (which is awkward and I don’t really recommend it) and the large heavy bag in the red canvas shopping tray below the seat. That thing is just fabric, and attached with velcro, but I can tell you it carried about 30 lbs of cat litter and cat food with no trouble at all.

This scooter makes people stare, and ask questions, much more than my usual mobility scooters or manual wheelchair. I need to carry small flyers with an FAQ.

For the FAQ:

* “Does Medicare pay for that” (People on the street want these for their older relatives.) My answer: Probably not. And I don’t really know. I have never yet been on Medicare.

* How much did that cost? (An awkward question. I answer by saying “You can get a mobility scooter from about $700-2500” That way avoiding standing around at a bus stop admitting I just dropped 2K on this beast. I did not mind so much saying that I bought my old Zipr for $700. Class guilt . . . )

* Is that electric? What the hell do you think, I make it go with the power of my mind????? Oh, people.

* How far/fast/long does it go? Several miles, all day at least, 4.5 miles an hour, charge the battery by plugging it in overnight.

* Can you put that in a car? Yes you can and it easily folds up.

* How heavy is it? 35 pounds.

* Where do you get them? (Let Me Fucking Google That For You) Oh ok. *sigh* Travelscoot.com. Someday I hope these things are just in every big drugstore, Target, Walmart, etc. Or just in bike shops and you can test drive them there!!

* Yes, it has reverse. No, it does not beep. No, I really don’t want it to beep. Do you beep when you take a step backwards? Well then.

* What if it breaks? Yes. What if. That’s the million dollar question. You better learn some things about electronics or cultivate a relationship with your local electric bike/scooter repair shop. The thing has a warranty, which I will probably be exploring at some point . . .

* Not asked but should be on the FAQ: You need to have good balance, ability to squeeze the hand brakes, and be able to transfer independently to use this. 3 wheels is not usually a good option for an elderly person as you can easily tip over.

There is room for competition for scooters like this that have a few more features but are still stripped-down, lightweight, and easy to understand for maintenance and repair!

There is a fantastic blog with Travelscoot reviews by Elizabeth Fisher that has reviews and photos by many people using their TravelScoots.

I put up some unboxing and assembly photos. Feel free to take a look at all my photos on Flickr with the travelscoot tag .

In short: this is a GREAT scooter if you have 2K lying around and you are a very nimble person who for one reason or another can’t walk very well. To drive it, you need good balance and good hand control (brake squeezing especially). It could be possible to modify a travelscoot with a custom seat to meet your particular seating needs!

Wheelchair and Scooter Hack Day

The Hackability group met up at Noisebridge this weekend to work on modifying, maintaining, and otherwise hacking our scooters and wheelchairs. This first meetup was just 4 of us, Ian, Zach, Susan, and me. Ian and I talked first about projects we would like to do for his powerchair and my scooter. Susan is an engineer, inventor, and hacker who has some great ideas about improving power and making a regenerative braking system for my scooter. Zach came prepared to give us a really great talk which I’ll try to describe from my notes.

Zach made the point right at the outset that we can think of scooter hacking as falling under two categories. The first is for comfort and repair; things that are necessary. The second category is mods and upgrades; in other words, extra fun stuff. About comfort and repair: He talked about how long it took him to really listen to his body and pain levels and know what was irritating about his mobility devices, rather than accepting what he was given as “just how it is”.

For him, stability is an important factor. Parts wiggling on his scooter caused more pain for his back and legs, while rattling was distracting and annoying. He then took the seat off his scooter and I demonstrated my seating as well, to show how you can stabilize the seat housing pole. Mine was vastly improved simply by wrapping in a few layers of duct tape. Now, on the bus, my seat doesn’t wobble back and forth forcing me to use my low back muscles to cope with the sway of the bus plus the erratic seat motion. Many of Zach’s other mods were done with cheap and easy to find, objects like zip ties, heat shrink tubing, and blocks of styrofoam. He is a genius of finding free or cheap things to hack! His repairs look sturdy, neat, and durable. (Unlike my cardboard and duct tape repairs which are such a hot mess.)

Scooter batteries

He had recently put a bigger motor into his scooter frame. The motor heats up and has a fan to the side next to one wheel. Jacket sleeves, backpack straps, and other stuff was getting caught and tangled in it. Zach ended up replacing the fan with a blade from a computer’s cooling fan, and making a curved metal guard for it out of what looked like a thin plate of metal from a hard drive casing.

fan guard for scooter motor

We digressed for a while into talk about batteries, their expense, how many amp-hours our batteries have, ideas about bolting extra batteries onto the side of my scooter and wiring them into the existing removable battery case. The lack of cheap smart chargers means that most people with mobility scooters have ineffective chargers which shorten the batteries’ life and effectiveness. My batteries, new in March, are already dropping in voltage output capacity even when fully charged, so my scooter is laboring going up hills or for any significant distance. Susan has plans to design an affordable smart charger. We’ll see how that goes! For more on batteries and charging, read up on Battery University.

MOving on to our second category of mobility device hacks: The fun extras. Zach showed us some of the cool stuff on his mobility scooter, like how his wire mesh basket is stabilized with a flat metal plate with screw holes and some hot glue. I suggested black latex paint might be a good alternative to hot glue, and may try that for my own basket, which squeaks annoyingly against its brackets. We talked about alternate handles for scooter grips and controls then admired Zach’s fancy lights. On the more simple DIY side of things, he has a small battery operated LED light meant for a bike, velcroed onto the side of his scooter dashboard. Advice: use the real Velcro not the dollar store kind! As a quite complex lighting hack, he has strips of LED lights which are wired into his scooter’s main power supply and through a homemade circuit board which steps down the power.

Another complicated hack we discussed was in building our cruise control switches and stabilizing the forward and reverse levers which make the scooter go. These levers on most mobility scooters use a non-precision potentiometer. The screw on these things goes out of whack, which can be very annoying.

I have to digress for a minute to explain scooters, or at least the scooters I’ve used and seen. They have levers on the handlebars which connect to a trim pot and the main power supply from the battery. The power also obviously goes to the motor. There are no brakes. There is a solenoid of some kind which stops the motor. There is no neutral gear so if the motor stops, the scooter stops. But there is also a printed circuit board in the mix which has “safety features” programmed in. In practical terms this means if there is any interruption or big fluctuation in the power supply, or you hit a huge bump in the sidewalk, or I don’t even know what else, the motor cuts off. When you start your scooter and the centering of the levers controlled by the potentiometer is just a little bit off, the motor won’t start. To adjust and fix the potentiometer’s screw, you have to take the entire plastic housing off of the scooter’s controls.

Anyway, Zach’s approach to this problem, from advice from our friend Jake who is a fabulous hardware/electronics hacker, was to add a 50K trim pot in parallel with the existing one. He placed it so that its screw faced outwards, and drilled a hole in the plastic casing so that he can adjust it with a screwdriver without taking apart the scooter. Brilliant!

His other mods include a USB charging port on the dashboard and a scooter-charging port also on the dashboard rather than low on the scooter frame. We ended up discussing charging a lot more, and what gauge of wire is necessary, but I don’t have good notes on that.

At that point we looked at Ian’s powerchair and discussed some of its features and problems. It is a much more complicated beast than a scooter, and a couple of orders of magnitude more expensive to buy and get repaired. Powerchairs have two motors controlling the wheels so that they can turn in place, while scooters tend to just have one motor, with forward and reverse. Powerchairs seem to have much more powerful batteries and have more complicated control boards hooking up the joystick or other single-hand control with the power supply and motor. Ian’s chair has a fancy color screen hooked up to the joystick control but it seems unhackable. Or at least not without risking ruining the chair’s software. It seems a shame that it is not easier to to software or firmware mods that we could experiment with and roll back the changes if the experiments don’t work out.

The thing we worked on was a power plug in the back of Ian’s chair. It is an Anderson connector and didn’t work, maybe from being shorted out, or maybe because it is wired wrong. We thought about cutting the wire and replacing the plug connector or reversing how it was wired. We took off the back plate of the scooter housing to see if there was anything obvious to do that wouldn’t mean we had to take apart the entire chair. Hooray, there was a fuse between the plug and the battery, and it was blown. Zach found us a new fuse from the many tiny parts bins in the Noisebridge hack shelves. Ian replaced the fuse and put everything back together. It tested out okay with the multimeter this time! But the plug that he wanted to use with it, which is a DC/DC power converter from an electric bike company, wasn’t wired the same way. We concluded it would be best to either buy a new part ($50) or cut apart the bike part to reverse its wiring to the connectors.

Thanks very much to the role playing game group in the other classroom who moved most of the tables out of the room for me before our meetup!

scooter hacks

It was a great meeting with a mix of lecture, discussion, theory, and hands on practical demos and work. If you would like to join our mailing list, here’s the link: Hackability mailing list, for DIY hacking, modifying, and fixing existing wheelchairs, scooters, powerchairs, and other mobility or accessibility devices. If you’d like to come to our meetups in San Francisco, you are very welcome. Please join the list and let us know!

On bus lifts and complaint forms

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

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

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

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

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

Here is how a smooth bus-boarding goes:

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

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

bus-diagram.jpg

In a bad situation, here is what can happen:

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

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

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

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

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

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

49 bus with broken lift

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

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

MUNI complaint screen 1

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

MUNI complaint screen 2

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

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

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

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

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

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

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

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

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

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

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

Sometimes the form returns an error message!

muni complaint form error page

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

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

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

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

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

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

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

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

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

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

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

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

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

Deconstructing Cheney's De-Inaugural Wheelchair

When I heard that Dick Cheney had pulled a muscle and was going to be attending the inauguration in a wheelchair, I was filled with deadly fascination. How would that play out?

Would the inaugural ceremonies be even remotely accessible? Not bloody likely!

Would he self-propel, or would someone push him? Would the person pushing him be secret service, a family member, military, or a medical worker?

Would Cheney have a steel framed 70-pound hospital clunker of a wheelchair, or would it be halfway decent? My vote was for an x-frame Breezy, still cheap and easy to lay hands on, but under 40 pounds, maybe in red for its political symbolism value. Other wheelies I know were saying “No way, he’ll be in a clunker.” Even though I think that Cheney should (and WILL) go to jail for being a war criminal, I would have liked him to have a halfway decent wheelchair. Hell, I would personally have decorated it with the stars and stripes.

I imagined, and then later saw, Cheney being shovelled about from place to place behind the scenes, through freight elevators and dank back-hallways, maybe even a steam tunnel or two, carried ignominiously or bumped up backwards over some surprise steps no one thought about, and I felt a bit of schadenfreude there though I’m not proud of it. But I wondered, would anyone in power notice, a little bit more than they did before, what inaccessibility means, how excluding and alienating and humiliating it can be? Would anyone process, or whatever they were doing, with Cheney in his wheelchair, rather than leaving him to be tunnelled and elevatored and ramped while they triumphally process up and down majestic red carpeted staircases?

If you were enjoying their own moment of schadenfreude at the powerful man brought low, did you think about why wheelchair use was being brought low, was disempowering? Because it shouldn’t be.

Yes, I kind of giggled at the Dr. Evil jokes, but I also thought about them. Did you? Did you think on why they are a stereotype – how our stories have to give its villains a scar or “deformity” or a wheelchair (and a cat), using disability as a metaphor for being evil? I’m not saying don’t make the joke. I’m right in there posting the LOLcats of Blofeld-Cheney. But think next time you use the stereotype of the Evil Cripple.

I also certainly saw friends and strangers wishing permanent disability onto Cheney like it was a horrible fate, one that he deserved. I understand that is mostly just some anger talking. But this too exposes a bit of thinking in our society that people with illnesses or disabilities deserved them as a sort of punishment for wrongs or sins committed. I would like to invite people to think on that idea for a while. And think on this: why you think it might be such an awful fate for Cheney to use a wheelchair? Why is that? Do you think I have an awful fate? Do you pity me, to the extent that you would damn Cheney?

It was amazing to me, while I watched the inauguration, to see people I know from disability activism online, also Twittering and Facebook-chatting their reactions to Cheney’s de-inaugural wheelchair. Were you watching? Did you feel that strange agitation and excitement and curiosity?

What I felt was this:

How bitter, but how very expected, that the top levels of our own government, the most powerful men around, can’t pull it together to obtain a halfway decent wheelchair and decent access, for one of their own. That exposes the deep, deep ignorance in our country about access for people with disabilities, and how far we have yet to go.

(Have to add: I thought the Daily Show’s coverage of Cheney’s wheelchair was **hilarious**!! It starts at 2:32 in this video clip. He totally could have pushed it further!)