Well that escalated quickly

Going home tonight down Guerrero from the NERT training, I paused on the sidewalk as a couple of cars were coming out of the driveway by Mitchell’s Ice Cream. One pulled out onto Guerrero and the other started to inch out. I was waiting for them both to leave before crossing the driveway in the dark. The second car’s driver noticed me and motioned for me to cross in front of him. But, he was pulled up so far that to get by I would have had to go on the uncomfortably angled part of the driveway as it went down into the street.

So I waved him on, smiling and nodding as if to say thanks for the thought but no… and waited. There was no traffic at all at 9:30pm. So he could just go and be done with it.

He shook his head and started to back up his car a little bit, maybe a foot or so, but it still wasn’t really enough and I decided what I usually do, which is: do I want to wait 10 seconds for this car to move along, or do I want to put myself in front of a 2 ton death machine in the dark when someone could come along and rear end it, etc? I mean, why bother? Am I in a hurry? No and I’m even comfortably sitting down in my nice powerchair.

So I shook my head and waved at the guy again and said “It’s ok I’ll just go after you” and he shook HIS head and started to roll down the window and told me to go on and I said “No I really don’t have any interest in being in front of your vehicle I’ll just go after you go.” He looked angry and started to roll forward while still telling me I should go! As he pulled out into the street he yelled “BITCH!”

Yeah that guy’s heart was definitely in the right place! He was so kind! So charitable! So thoughtful! Too bad his head was up his own ass!

In which I rant about a minorly negative random encounter

Don’t be this weird hostile bus stop lady….

I was going to the bus stop yesterday, on a wide sidewalk on Mission, and I passed a couple who were standing by the bus stop bench about to sit down. I was hugging the wall by the pizza place and nail shop and about to turn to wait for the bus just a little ways down from the bus bench. So, I was something like 8-10 feet away from the couple.

The woman looked up as I passed and said “OH!!! Sorry!!!! I didn’t see you!” and kind of mimed as if she were getting out of my way. This was weird, since she wasn’t in my way, I wasn’t in her way, and there was nothing indicating that I was about to be anywhere near them.

“Uh…” I said, super coherently. “Well, I saw you, so, ok.”

Then I waited for the bus without anything further happening but I could see her weird discomfort. She was still bothered. She kept looking at me and kind of acting agitated. Her “Sorry!” was actually not a sorry but was more like a hostile accusation as if I had done something wrong and actually I was supposed to apologize.

This happens all the time (basically a microaggression). Like what happens when someone exaggeratedly holds a door open for me, and I don’t want them to, and I have to ask them to move out of the way because they think they’re holding the door open but they are literally blocking my path through the doorway and I don’t want to run them over. Or even if i can get by, I don’t want to put my face in their armpit.

People doing this kind of thing aren’t helping — they get angry if you don’t respond “correctly”, and then it becomes clear that they started out angry with their bogus offer of help. They are full of resentment and are uncomfortable with my presence and they want me to behave in a way that is apologizing for my presence.

Once you’ve experienced this multiple times a day every day, as you are just minding your own business, you will know what I mean.

And, actually, I’m not always so proud, I often act in a placating manner to make other people comfortable, especially in a crowd, while waiting in line, on the bus, and so on, because honestly it just makes thing easier. For example I normally feel like I am “supposed to” thank the bus driver at least 6 times while getting on and off the damn bus, once at every stage of the interaction like, they see me and start to lower the ramp or lift, they then offer help of various kinds or do stuff, or they give me unneeded (bad) advice or warnings, and I have to acknowledge it and I try to be polite. Probably, y’all get on and off a bus with maybe one “thanks” if you exit at the front but that is not my experience.

So, back to our story.

Time passes. I sit at the front of the bus playing Pokémon, and everything is remarkably peaceful for a middle of the day ride on the 49 bus. The driver remembers I’m there and also, I remembered to push the “ramp please” button well ahead of time and there is only one guy in front of me who is kind of trapped and has to get off the bus to let me off by the ramp, but the driver still yelled at the top of her lungs, “WHEELCHAIR COMING OFF WATCH YOUR FEET I SAID WHEEEEEEEEELCHAIR COMING OFF” I thanked the driver and said have a nice day. While the yelling is often unnecessary and unpleasant it does get the job done. The thing is I can say “excuse me” or “con permiso” myself to the people who I need to get by who are usually looking right at me anyway and can tell I am intending to get off the bus and can see perfectly well what needs to happen.

OK so, now I’m off the bus and it’s an even wider sidewalk than on Mission where I started. The sidewalk is at least 15 feet across. I suddenly realize that same couple who were at the bus stop with me had gotten off at the back of the bus and were on the sidewalk, again near the curb while I was on the far right side of the sidewalk by the buildings. The woman fidgeted around (not sure how to describe this – but it’s like someone doing a lot of “pay attention to me!” body language like they are about to speak to you – as if awkwardly trying to get the attention of a waiter including being frustrated at not already having that attention). And she did a little laugh and said “Oh!!!! I’ll TRY not to get in your WAY this time!!” and mimed “getting out of my way” again even though I was nowhere near her and not aimed anywhere near her.

It was so irritating!

I said “You weren’t in my way before and you’re not in my way now” and stared at her with what was probably the rudest face possible of incredulousness as if a cartoon though balloon that said “You’re an idiot” was floating over my head.

“Gaaaaah! I was JUST JOKING!” she said huffily…. making a little scoffing noise. Her husband stood there looking awkward and probably wishing he could sink into the ground with embarrassment.

I did not behave with the proper level of humility for this beeyatch to accept my presence on the public sidewalk!

I beetled uphill at a goodly clip, my maximum 5 miles per hour, wishing I were a goddamn rocketship to get away from this rude person even faster!

Lady… Let me just be clear…. Madam Fussypants, stick-up-your-butt, REI-clothing-wearing-probably-a-unitarian-white-lady-who-loves-calling-the-cops lady from my neighborhood…..I can snap judge you too! (Thusly.) I dunno what your deal is but you want me to perform some sort of role here for you that I am unwilling to perform!

I am notorious for chatting in a friendly way with total strangers on the street but she was such a jerkface that instead she got my “fuck off” attitude and nearly got me to stop dead in my tracks and pop off in an enormous harangue that would not have helped her obvious feeling of discomfort with my MERE PRESENCE IN THE PUBLIC WORLD.

Whatever demon she is wrestling with, whatever fear of disability…. I wish she would go deal with it in therapy and stop letting it hang out all over the sidewalk. I can’t be the only wheelchair user she ever sees in this town especially if she takes the goddamn 49 bus! What is her problem!

As my mom would say… Some people just need a good slap!

OK, so, all of y’all, don’t do this shit, it’s ridiculous!

Thanks for coming to my TED talk.

Warcross is awesome!!!

Warcross continues to deliver the goods! I love this book. The gamer/hacker heroine in her ripped up jeans and flannel shirt has now gone through the first draft for the Great Games or whatever they are called, and was picked first to be on the Phoenix Riders team even though she is a lowly level 28. The captain of her team, Asher Wing, is a wheelchair user, which made me instantly happy. I was trying to figure out from the description what kind of chair he had and I am thinking powerchair since his headrest was mentioned. Another named character on an opposing team was a former Paralympian.

Scenes of clever hacking… loving descriptions of leaping around and fighting in the Game . . . And she has moved from her first swanky hotel room to some sort of team training mansion where she has a suite with a rooftop patio with her own private infinity pool.

They have also been to a great party at a disco which was seamlessly wheelchair accessible with great augmented reality. There are so many adorable details like that there is a (female) character named Hamilton.

I also dig that we see more of Emika’s motivation and backstory for the high school hack that got her arrested.

This is like the perfect antidote for the boring sexist barfbag that was Ready Player One. It’s assuaging my soul!

Further adventures

More early impressions of the Whill Model-CI. I took the J MUNI train to Dolores Park yesterday and it was pretty easy to do everything. I’m getting used to joystick driving, feeling more confident there.

The new MUNI cars are spiffy – clean and sparkly even. The large front wheels of the Model CI were great going over the gap between platform and train. In my Travelscoot I had to gun it at top speed to jump the gap. I especially like the new accessible button placement for the front of the train car. You can reach it whether you have the seats flipped up or not (while the old style cars have the button under the seats — you can’t get to it if you’re actually sitting on the seat, and have to yell to the driver instead.) The bigger windows on the car were great.

bus-button.jpg

(My ride home was also fine, old style train car, more crowded, but not hella crowded, and people moved aside for me. I did not run into anyone. Or, if I did, I then ate their souls and brain-wiped every witness so it’s more or less like it never happened.)

No problems navigating around the cafe. I practiced a few times at pulling the chair up to the table with the arms half-raised. If you have an iphone I think you can raise the arms, then steer the chair with your phone, but the remote steering doesn’t work from android phones yet. It worked ok to raise the arms a little, pull forward, then turn off the chair and pull the arms further back.

liz-in-powerchair.jpg

Then I zoomed around Dolores Park for a while. By this time I was in “sport” mode.
Eco mode – the highest speed is limited. Ignore it
Normal mode – high speed (setting 4) is 5mph. setting 3 is maybe 3mph
Sport mode – high speed is still 5mph. Setting 3 is 4 mph or so.

I didn’t notice any other differences between these settings.

OK so here’s the buzzkill moment – I was zooming down a long glorious hill on the highest speed and then – the chair downshifted on me! Slowed to a bumpy crawl! When I say to go 5 miles an hour, I mean it! Don’t decide without me! (I missed my train, as well as the fun of going fast downhill). Instead of zooming with the wind in my hair and feeling free, like a cyborg should, I was imagining some grim Authority Figures telling me that it wasn’t safe and I wasn’t allowed and then I imagined myself flipping them off!

You know what I’m going to say!!!!!!!

The motor controller should be hackable!

Or, at the very least, fine grained enough controls on the phone so we can program it to do what we want it to do.

Turbo mode!!!!! 6mph! And no sad, draggy-ass downhill downshift!

I’m not the first person to say this and I won’t be the last!

The battery was at 75% when I got home, seems fair enough but it depleted faster than I thought it would (it was not all THAT much zooming around the park.)

Picked up groceries today in pouring rain on an even steeper hill with leaves everywhere on the sidewalk. Also fine. I hung two bags off the back of the chair and had another heavier back on the footplate between my feet. It’s now feeling routine to switch to speed 2 when I go into a doorway. And I feel more at home on day 3 of driving around – it has started to feel like second nature.

Whill-CI initial impressions

I took the Whill-CI to do some errands today. Here are my first impressions.

Driving with a joystick is getting easier. I still have the (wrong) impulse to push harder to go faster.

Definitely enjoying the extra speed and the comfortable seating.

The wobbly wheel feeling is still there. It seems to be the way the front wheels sometimes hit a sidewalk crack (one in parallel to the wheels, not the ones perpendicular). Small changes in slope also make a big difference in pulling the front wheels in one direction or the other.

Notching down the speed when going through a doorway or when in line worked OK for me. Opening doors is harder than it is in the TravelScoot, and I’m wider, so there’s less room for error. Definitely appreciated door-opening buttons today (automatic door at Walgreens, door button at Pinhole Coffee)

I am seated lower down than on the travelscoot, and can’t reach most payment systems in shops and cafes.

People look past me more, not even glancing up, like they are embarrassed. They cut in front of me in line automatically and try to push past me in a situation where they could have gone a different way, said excuse me, or expected a standing person to move aside. That’s not new, but it seemed worse today. It may be partly from the height difference.

I feel a bit odd not having something in front of me, curiously vulnerable.

But cool, at the same time, from my extra speed and my casual leaning back posture.

I do miss the unicorn horn and my decorations on the TravelScoot. Thinking now about how to decorate the CI to be a little sillier. Not quite ready to plaster it with random stickers…

Backpack straps work pretty well. It is a little harder to shop and put things in a bag when I don’t have front handlebars to hang a bag on. The under-seat basket is too rattly and loud for everyday use, so I took it off. I may try to get someone to make a canvas one.

I went to the dispensary, where the bouncer complimented my wheels; Walgreens to pick up stuff at the pharmacy; a cafe to have a pastry and coffee and work a bit (pulling up the arms of the chair to sit at the table, as they do so neatly in the promotional videos!), and up a long steep hill to Pinhole to pick up some ground decaf and the butcher shop for fish for tonight and turkey for the holiday. No complaints on the hill so far.

However… I do have a complaint. I did not magically materialize on a yacht and then go for a picnic with an elfin sweater-wearing lady carrying a bottle of wine at the Palace of Fine Arts. Where’s my damn yacht — instead I just got elbowed in the face in line at the drugstore as usual! hahahah! classy!

Tomorrow I’ll try riding the J train (which should be not too crowded), going to a different cafe to work and have lunch with friends. Wednesday I may try the bus. (The bus feels daunting so I want more practice before trying to maneuver in such a tight space where other people can be very tense about it.)

I went about a mile and a half total — the battery went from 97% to 87%.

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.