Category: san francisco

Random encounter: scooter demo on the bus

Posted on by Liz

Random encounter: On the 49 bus yesterday I explained my scooter to a woman who was very interested in one for herself. Then had to start over but this time in Spanish for another woman and then the first one began translating for someone who spoke Mandarin. 5 people took cards with the name of the scooter on it (at least…. I may have lost count). Somewhere between 24th St. and 14th St. I finally just took the whole scooter apart, folded it up, passed around the lithium battery, then put it back together (by request). “FREE SHOW Y’ALL!!!”

The first lady (the Chinese translator) nearly got off the bus with me to try it. She had opinions on reupholstering, making it easier to fold, a better cup holder, my decorations, the good qualities of the little bell on my handlebars (which she kept reaching over to ring, looking at me and giggling)

It was a little bit emotionally exhausting and I missed my usual Ingress hacking/Pokémon catching fun for the bus ride but it was also super fun. We had good cameraderie going in the front section of the bus.

If everyone I talk with about mobility scooters gets one, none of us are gonna be able to fit on the bus 😀 They will need more and better buses, that’s all!

Disability Intersectionality Summit 2018 (Bay Area)

Posted on by Liz

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

Random encounter on the bus

Posted on by Liz

Random encounter on the bus yesterday on the way home. The bus was a little crowded, enough that I thought the bus driver might not let us on, but he started to lower the lift for me and to ask some folks to move back. As he did, an older woman with a walker came up and I fell back a bit to let her get on first (on the theory that I am sitting down, she is standing up, let her get settled). She nodded at me in a very definitive way as if to say, “CORRECT”.

But the bus driver even more correctly said, No, wheelchair first, and I realized that if the lady with the walker got on first I would not be able to go past her easily to get into the wheely spot because of the particular configuration of the bus, so I got on first (with some attempt at conciliating explanation ) As I settled into a seat and pulled my scooter into the little open slot next to it I realized I should save the empty seat next to me for her because she was very short and the other open seat near the front was the kind over the wheel well that is a few inches higher (too high for my feet to reach the ground if I sat there) So I stopped a middle school kid from sitting next to me. Walker lady saw this with a keen eye and sat with me triumphantly. Ada came to stand behind my scooter with her back against the upturned seats, messing with her phone.

We smiled at each other a lot. She then pointed out that my red flowers on my scooter matched her red walker and jacket. I agreed and said I like bright things. “This is from Guatemala (her bag), This is from Mexico (her brightly flowered huipil) This is from Peru (her woollen striped headband) And me, from Mexico” I admired her colorful ornamentation and said where I was intending to get off. She was going to play bingo at the church on Cortland. I told her about the free tai chi classes at the neighborhood center across the street.

During the bus ride every time someone new got on she quickly assessed the seating situation and decided where the new people should go. And she made it happen with very little English – and perfect confidence – in fact we both conspired (in a way hard to describe but which meant we had to both indicate with body language that people were welcome to go past us or that we could slightly move our machinery around and back again). Her bus-packing logic was impeccable, factoring in frailty, youth, and encumberment.

On this bus, I generally get off at 30th Street because it’s a more major stop than the one a bit closer to my house, and more people get on and off there. If I wait for the closer stop, then the bus fills up and I have to make my wheely way past many people’s toes, so it’s better to leave during the period of greater churn. I would have liked to explain my reasoning to the maestra of bus loading but instead wished her luck at bingo.

“Do you see that lady a lot?” Ada asked me once we were on the sidewalk. No — I just somehow loved her instantly because she was so cheery, and also because she was super into figuring out bus seating optimization. 😀 That’s my story…. It is uneventful – but I enjoyed the entire thing.

Also! That was a particularly decent bus driver to let us both on without fuss and I intend to compliment him through the 311 system.

Not looking away

Posted on by Liz

Quick blog post so that I feel more centered. There is no way to catch up as everything is moving so fast.
I had trouble looking at news after the election until a week before the inauguration. I read a lot of books instead and spent time with my family. (Huge binge on novels by Margaret Oliphant and some re-reading of many books by Octavia Butler, among others.) Posting lazily on Facebook instead of here, which doesn’t make any sense…. I feel better posting here, because it fits my philosophies of open information and an open web, anyone can link to it and read it without any fuss, and I control it. Though I like the interactiveness of getting comments on FB and the relative ease of posting photos.

Last week I went with the kids to the women’s march in Oakland joining up with an informal “crip contingent” with many friends. It was beautiful and heartening. I have not made it out to many marches in the last few years, but tried to support Occupy and Black Lives Matter and other protests through sifting through information on Twitter and livestreams and news and so on, gathering, filtering, verifying, amplifying. Protests are exhausting but also energizing! I want to show up, represent, be there in solidarity.

Here I am with the big banner. I live tweeted the whole time with one hand while driving my scooter, except for when I was holding one side of the banner. It was challenging to scoot while balancing it and to keep in pace with whoever was on the other side, in the middle of a huge, often packed, crowd. Corbett brought the banners and signs with help from others (I can’t remember the name of the woman who made the banner.. Kathrine? Kathleen? starts with a K. ) As always, I felt this amazing glow of pride and love to be with a radical crip crew and other disability rights activists, advocates, writers, poets, gorgeous people! The march was huge. They said 80-100 thousand people were marching in downtown Oakland that day.


Here’s Mariana and Ian with the banner, which reads “American Dream Must Be Accessible”. This photo got circulated a lot, as people liked the sign and it being carried by wheelchair users and I think also because of the dramatic arrow painted in the road in front of them, pointing forward.


Both kids are in this too but they are holding the middle of the banner and a sign. I was so proud of the kids stepping up to help out in whatever ways were needed, taping or zip tying signs and banners, steadying the signs which was exhausting and needed constant attention, watching out for little kids, scouting ahead for our group and reporting back. As I told them before hand there is nothing like a bunch of radical crips for radicalness and not giving a fuck. TRUE.

Meanwhile I had to work pretty hard at work doing Firefox release stuff for two weeks solid along with the rest of my team and other teams. The week before a release is super intense and the week after that is also a bumpy unpredictable ride. If it goes smoothly you can relax a bit. If not then it’s more of the absorbing the firehose and figuring out what to do. The complexity is enjoyable. I also feel useful and responsible. Getting you the best possible browser that we can!

I went to Point Reyes with my sister on a day trip and had a great time driving around in the sun through the green hills. We saw baby (newborn) seals at Drake’s Beach. I also bought fancy beautiful scarves at the place next to Cowgirl Creamery, getting really into this middle aged lady scarf wearing thing, admiring other people’s clearly beloved fancy scarves and fiddling with my own (ideally warm, and beautiful, and with a texture nice to feel as I fidget a lot and like something in my hands)

I have also been doing senior tai chi classes since mid-December trying to work something local and easy to get to into my life. Danny has been walking a mile every day. In theory I will add in daily youtube video tai chi workouts even if it’s just 10 minutes. I can do the hour long one at the Bernal Heights senior center but cannot keep up with even 5 minutes of the one across the street at the Library. The one at the 30th St. center, I can do the first half but not the 2nd. (Yet).

Saturday my plans were to rest and write (exhausted from my tai-chi-ing, work, the march) but instead because of the “Muslim ban” I went out to the airport with Danny and we joined the protest there. I live-tweeted the SFO protest as is my habit, for the time that I was there, till around 5. It feels like the way I can contribute best, to report on things live, be amusing, fierce, convey the excitement and passion of the crowd and that I’m feeling. Next time I will try typing as I can do it much faster, write more liveblog style, and type without looking at a screen unlike using the phone to tweet. (I come with a built in desk, my lap, since i’m sitting in a wheelchair!) It is also very informative and mindblowing to look at others’ impressions and reporting in real time. Again suitable for my skills of fast reading and absorbing information.

The protest started small before the suggested time of 3pm with a few dozen to 150 or so people in a loose circle chanting with signs and a lot of news media hanging on the fringes interviewing people who looked like airport bureaucrats, and police of many stripes hanging back complacently. A little bit before three, crowds of people surged into the international terminal area! The crowd doubled in size fast and then grew to well over a thousand. Lots of families, small groups of people with homemade signs on cardboard boxes or paper plates or just pieces of paper. No Trump, No Pence, No Wall, No Fence was a good chant, also LET THEM GO, LET THEM GO and Move, Trump, Move out the way. We went into the street blocking it off for a while and then moved back onto the sidewalks. It became clear people were planning to stay all night. Until everyone detained was released, and until the new planes flew in and they make sure everyone gets out! The lawyers set up makeshift offices — people even brought printers! Lots of people brought food (my friend Heather baked cookies and brought them by to drop off). It was beautifully spontaneous! Keep in mind the entire thing was a surprise as Trump announced it the afternoon before and people all over the country had the idea to go do sit-ins at the airports. It is still going on.

People holding signs in the protest outside SFO’s International Terminal on Saturday:



Sunday I considered going back but exhaustion and pain made me think that was a bad idea. It’s not going to help anything if I go into a pain/inflammation flareup and am stuck in bed for days or weeks. So I stayed in bed and wrote. I was going to write this blog post, but instead had the urge to respond to what I thought was a very moving act of support from the guy who runs the SFBART social media accounts, and the SF airport officials announcing their own support of civic action of the protesters. So, I wrote a silly sweet fanfic of SFO and BART being roommates, having tea together and watching Doctor Who, discussing their political beliefs and their job as civic infrastructure. My feeling was that this would be emotionally supportive for many people, sort of comforting…. and my silly fiction impulse would be a form of activism, like when I pass out zines and stickers to make people feel happy at getting a random gift. (ZINE FAIRY!!!!) Then someone who had read my tweets asked me if I’d write up a description of the protest, for Crimethinc, “Don’t see what happens, be what happens“. Not the most shining example of writing but there it is.

Tonight the ongoing struggles and constant flow of scary news of what Trump and co. are doing is tough but we are all very determined. I have read plenty of history of how dictatorships go down and have been worrying about this coming for a while. I thought during my lifetime I had a chance of not experiencing it super directly, dictatorship oppression and war and I still hope not. As my characters mention in the ridiculous infrastructure fic, obviously, not everyone is experiencing the safety and comfort I have been lucky enough to have so far in life, which makes the safetey and comfort less good to have, we can’t be unaware of injustice and inequality and suffering around us. As I see other very privileged people like myself shaken by fear since the elections and especially in the last week, it is also very clear that people experiencing worse oppression all around us, from racism, police violence and impunity, the experience of prison and poverty, justly feel angry and impatient to see middle class white people wake up… finally….. It is very annoying to know that our particular voices are not heard, believed, felt, to be real experiences worthy of action even if it is fairly natural for people not to act until they feel threatened. We have to look out for each other and please think on who is more vulnerable than you, if you can, around you in your community and find out what they need rather than worrying about your 401K or the dreaded knock on the door that might come from your imprudent tweets, coming back to bite you in the ass in our potential future under dictatorship. If you can’t I do think that’s understandable, but what is your comfort, even your survival, worth, under what conditions? Time to think about things on that level, very soon now if you haven’t yet.

The great injustice of this country has been for many years that we exist in comfort while people are incarcerated with the most ridiculous inequality and over-zealous application of law, law that should protect us all has been used to harm people in poverty and most deadly, harming people of color, black and latino people, black men in particular, and you can see from who gets shot by cops that a high proportion are disabled people of color. We need to support Black Lives Matter and fight against not only police shootings and violence but the extreme…. EXTREME violence of the state in locking people up for years, for their entire lives, for basing entire sections of the economy on exploiting their incarceration, making the prison industrial complex a true horror of our time in the United States. We live with this reality, to me, something just unbelieveable, unspeakable! You will, maybe, look back and wonder how this happpened, how we lived with it, how we were complicit, how we had jobs that others might have had but for the school to prison pipeline, the way it underpins our entire country. It is vile and it doesn’t have to be this way!
Still, I went out tonight to the Internet Archive to “Lost Landscapes of San Francisco,” a collection of film clips from the last century, very beautiful, lovely short introduction by Rick Prelinger speaking on the theater as commons and the ways that art and history that we make and participate in are a way of resistance in dark difficult times. I will keep doing my work, part of which is writing poetry and bits of ridiculousness, broadcasting enthusiasms, caring for people around me lovingly, making my ephemeral zines, and tweeting idealistically into the air.

Love,
Me.

(originally posted Jan 30 2017 – reconstructing from old backups, pics still to come)

Fun Days in Bernal Heights

Posted on by Liz

Today I’m feeling deep appreciation for our sweet neighborhood in Bernal Heights. I spent the morning writing a book review in Pinhole Coffee, chatting with people sometimes and feeling thankful for JoEllen’s lovely cafe which gives such a good space for local community.

On the way home I ran into Frank from Good Life (we always say hello) and then Mike from Progressive Grounds who was blasting his friend’s band playing a cover of Minor Threat song from his bicycle.

Between the time I left and the time I came back, someone took half the books from our Little Free Bookshelf – leaving one of the guidebooks to Paris and the Penguin copy of Moby Dick. (Glorified name for what is just a wooden wine box on end, under the porch awning. It’s fun when other people leave books there, and I often read them and put them out again.)

I picked up some trash from the sidewalk and put it into the bin under our sidewalk bench made of stumps and a board. Someone sat there last night and had take out food and a cigarette. Someone else often comes and drinks a glass bottle of Squirt there, leaving the bottle… I wonder who it is, and I like them for having a habit, secretly visible to me though I never see them, only their distinctive bottles.

Running into Marc from Unicorn Precinct and having a rambly, jumping, lightning speed conversation about books and poems. He was reading Daniel Borzutzky and I felt like I recognized him (from ALTA conferences?) I told Marc about the neobaroque movement and he talked about his children’s play “Factory Full of Weasels”. Danny critiqued his copy of Jacobin magazine a bit (it has nice layout tho) and we both excitedly tried to explain the weird awfulness of “Politics and Apocalypse”. (Shudder.)

Down the street doing a quick errand I was chatting with El Ahorro owner and family as they are opening a sandwich shop in the back of the store – already a great neighborhood store.

Friends who live close by, coming over this afternoon for end of the year tea and black eyed peas.

The guy a few houses down must still be on vacation, his perpetual barbershop-and-garage-sale still closed for the holidays.

Next week I’ll go to the two free tai chi classes, one at the library, one at the senior center, a new habit in the making which will bring new acquaintances I’ve likely seen around the neighborhood.

It’s nice to live somewhere for years, to see the same people every day, in my usual haunts, feeling just a little connection to others, the opposite of isolated, knowing the usual ways the fog and afternoon wind rolls in and out through the gap in the hills, kind of like how we were aware of the tide when we lived on the houseboat in Pete’s Harbor.

[photo: a tiny zine called Fun Days in Bernal Heights, by the downtown zine kiosk owner]

Bernal zine

Looking backwards from the Wave Organ

Posted on by Liz

Today (ACTUALLY A MONTH AGO… I thought I already posted this) I had a specially fabulous time as I realized I was up at 8 or so while everyone else would sleep till at least noon. My sister was up for adventure and came over to take me driving around. We went to the Wave Organ. I thought I knew what it was and that it was some sort of art and sound thing by the historic ships. No!!! Totally different thing. We fooled around taking pictures and game-playing by the sea wall and then got to the end of a long long jetty.

The Wave Organ was very cool looking, not making any noise at low tide, but super beautiful, made of big slabs of granite and marble which I guessed might be from buildings from the 1915 Exposition but which turned out to be from an old cemetery. After we were there for a little while and I was considering walking around I realized there was a ramp down to lower levels. That was an amazing feeling. I felt really open and free and peaceful and safe. I was not going to annoyingly hurt myself attempting to clamber down there, or feel sad and pissed that I was wisely NOT hauling myself or limping or crawling to the fun bits of the park. Unexpected extra awesomeness.

wave_organ

My sister sketched in the sun while I sat in the little cave-like seat working on a poem about spaceport hookers. (Not even making that up.) We drove off, pausing to look at the Palace of Fine Arts, had lunch, drove through the Presidio to a scenic overlook, saw the “Spires” giant sculpture (neat but kind of underwhelming) and came back the long but nice way along the beach highway. I have been prudent in not doing too many things most of the time so it felt like a huge treat to go all over town and see things on a sunny day.

To get to the Wave Organ I could take the 49 and then 30 buses, or the 49 to the 101 bus and get off at the Palace of Fine Arts on Baker and Broderick. From there it’s a couple of blocks to cross to the marina and a sort of donut shack. There’s a pretty accessible bathroom there too. Then if you go far to the right down the jetty, past the St. Francis and Golden Gate yacht clubs, the wave organ is at the very tip of the jetty.

Thoughts on the past year. Lots of stuff happened! I changed jobs, went to Mexico twice on vacation with Danny and the kids, and went to Paris (with my sister), Orlando, and Whistler for work. I changed teams at work, and was release manager for two Firefox versions, 39 and 43. Mobility and health were about the same as usual, holding steady with small ups and downs. I had a few weeks on medical leave as I suddenly came down with shingles and there were definitely some low points with weeks in the ankle cast boots, but otherwise ok! I hung out with my fabulous family. I read a lot of books. Played a bunch of Ingress, did some swimming in the warm pool, scootered around in my TravelScoot, bought a new bed.

I wrote an article for The Recompiler and I feel sure wrote and published some other things (???) Maybe not though, maybe just a lot of interviews (“feminist hacking”, Double Union). I gave some talks but no really big ones. I performed some long poems at a show in Berkeley, “Iapetus”. I didn’t write any code or do any translation, sticking to more long weird experimental poems. Felt burned out on activism. But I do what I can and rallying round to support people in my usual way. I’m very lucky to know so many talented and amazing and loving people.

Our sweet cat Dyson died from ongoing kidney issues. After some months of cat-lessness we ended up adopting the first cat we got as a foster from the SPCA; Dashboard who is lively a young Siamese.

We had Thanksgiving & Christmas at my sister’s house in Oakland which as usual was super relaxing as they cook a ton of nice things and there are board games, cats, chickens, videos on a huge screen, general cosiness.

Last night we had a small party at a scale we could handle at our house. People dropped by all evening. We all worse sprouts on our heads. Some of us drank a non-alcoholic drink called a “Brain Fuzz” (lemon soda and ice cubes, with whipped cream on top). In general we made a mess with the blender, fruit, ice, chocolate, and some very gross “food” spray paint that you spray cake frosting with. Pro tip: it is really disgusting if you spray it on crushed ice.

One of my issues for the year has been slowing down a little. I worked on saying no a bit more, taking on fewer projects, going out less, trying to scale my life better to my physical ability and pain levels so I don’t burn out. Working less in the evening, writing less in the evening too, and instead, reading a lot in bed with periodic bustling around. I have gone out of the house every day for the last month (this is REALLY great).

Resolution type of things for 2016: Keep on with my attempt at balance of realistic activity, work, and rest and creativity. Swim and do pilates. Keep practicing languages in Duolingo steadily. Do some writing about work stuff. Write physical cards and letters to friends. Write with Milo and support the kids and Danny in their goals and generally make our lives nice. Work on my poems. Do a few new translations. Usual trickle of publishing things. Finish a new zine (the wheels one, or the Ida B Wells one, both in progress.) Edit Wikipedia occasionally as is my wont. Move along with project for producing that song by friends (more on that later). Support some more small artistic projects if I can. And, I will travel at least twice for work (London and Hawaii). Small steady progress seems like the key. Maybe a few more days off here and there when NOT sick and in pain would be helpful. While I am built more for emergencies and heroic bursts (creatively, in how I like to work) my body and mind can’t take it so I have to be really careful to be satisfied with smaller bites of … whatever it is… life… things… action… doing stuff… and not go with wild energy and enthusiasm until I drop. What if I didn’t do new stuff and projects all the time? Well, I’ll worry about that when I have to. I’ve been at that point and had to accept it many times. Right now I’m in between, holding steady!

Thoughts on UberAssist

Posted on by Liz

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

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

* The training was developed by some outside consultant.

* The training is free for drivers.

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

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

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

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

liz with a wheelchair wheel in a taxi

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

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

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

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

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

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

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

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

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

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

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

Armor a mile thick today

Posted on by Liz

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

Sidewalk construction barriers

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

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

SUV blocking the ramp

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

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

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

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

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

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

(More screaming)

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

“I hope your LIFE gets better!”

“My life is pretty great actually.”

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

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

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

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

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

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

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

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

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

Rainbow power!!!!!!!!!

Rainbow butterfly unicorn kitten

Like a warm pool

Posted on by Liz

My new stomping grounds are at a physical rehab swimming pool in San Francisco. It’s called Herbst Pool and it’s at the Pomeroy Recreation and Rehabilitation Center. I used to go to the Betty Wright pool in Palo Alto (that then became C.A.R. and then Abilities United). This seems quite similar. The Center was started in 1952 as a rec center for people with disabilities. It seems to have a lot of day programs, gardens, playgrounds, a gym and art classrooms, and this awesome pool where the water is kept over 90 degrees. This is the important part to me. Cold is painful on my joints and I get stiff quickly. But it also is directly painful on my “bad” leg. Regular room temperature air on my leg feels like burning ice which is why I’m a huge fan of long underwear or at least secret leg warmers (under my jeans). So, warm water RULES.

Pomeroy herbstpool

Like the Betty Wright pool, Herbst Pool or Pomeroy Pool (whatever you want to call it) has a very wide sloping ramp to enter the water, and a variety of PVC wheelchairs useful for going down the ramp. There are also very shallow and broad steps with handrails. It is easy entry into the water. They have all sorts of adaptive equipment for the water. I don’t need that stuff but I appreciate the easy entry and not having to use one of those slow, free-show lift chairs into the water. The pool is a beautiful and relaxing space as there is a skylight, and one wall is entirely windows looking out at the trees bordering Lake Merced. The walls are covered with cheerful murals of cartoon whales.

The locker room and especially the main pool room are kept pretty warm. There are many heat lamps in the pool area. Really fantastic if you can’t tolerate the cold. Of course I always wish it were warmer and had a heated floor… and a sauna…. but it’s the best I’ve ever come across.

Once I am in things are pretty good at the moment. I can walk around slowly in collarbone-deep water, and do squats and other excercises hanging onto a kickboard. When I am not in a flare up, or, in some mythical past before my ankles went awry, I am a strong and good swimmer with good endurance and a long history of loving the surf. I feel super happy in the water, light and gravity-free (as long as it is warm). I’m going every week for physical therapy in a small group that’s run through Potrero Physical Therapy (note: they are awesome.) And I am trying to fit in at least one other pool visit per week, hoping to get to 3 hours total a week.

It is hard for me to get to Pomeroy. When I was gearing up to do this I didn’t find directions on their site for how to get there by bus, and it was really unclear on Google Maps from their address (on Skyline) where the entrance was on a rather large and confusing block of land between three streets. This matters to me because it can be non-trivial for me to get from point A to point B even in my scooter (because of pain, or nasty weather) and if I do’t know exactly where entrances are and what a building or “campus” is like, I’m not going to take my manual wheelchair for sure as it can easily be too difficult for me to go it alone. So here are the details of how to get there for anyone else who is thinking of rehab at this pool.

And, while taking the hour+ long journey from my house to the pool and during the somewhat boring hour of walking back and forth I often think how I should write up a post about the pool. Here it finally is.

Getting to the pool

There is parking and drop off that is level with the pool entrance, which is on Herbst Road and up a little hill. There are at least 5 blue parking spaces and some extra. Other parking is along Herbst and you will meet that “hill” along with a possibly significant walk. From the drop off point in the closest parking lot (where paratransit will drop you) It is a pretty short walk in to the pool. I haven’t measured it or tried it yet. It is too much walk for me to do with out a chair.

There are 2 buses that go nearby, the 23 and the 18. The 18 stops on Herbst Road just outside the Rec Center campus. To get to the pool you will have to cross a non-busy street and then go up a steep slope (a full story, not something I want to do in a manual chair but might in a pinch). There is a ramp for this but again it is at least one full building story high. At the top there is a little garden with benches, and a small (not accessible) playground and grassy area for toddlers. I like eating lunch there. (I think on the other side of the campus there may be an accessible playground.)

Pomeroy courtyard

To take the 23 (the bus I ride to get there) you have to get off at Sloat and Skyline just north east of the zoo. This street crossing is a complete nightmare. It is a 6 or 8 way stop, with cars coming very fast. There are 3 medians you will need to stop on to cross another section of the road. At least it has medians! This is a crossing I would not recommend to anyone blind. Instead get off the 23 at the zoo entrance stop and cross there where there is a light and only 1 median and traffic isn’t coming from 6 unpredictable directions. This will add another 15 minutes to your journey. The Hellish Intersection scares the crap out of me every time. But I still use it because I need to get back home so I can work. The 23rd itself is a pleasant bus, not crowded, bus drivers nice and not super stressed; they are the old style buses with an unfolding ramp instead of a lift. It comes about every 20-30 minutes depending on the time and day. Note, the bus stop going inbound is not marked well and is on one of the medians in the center of the Hellish Intersection.

Hellish intersection sloat skyline

It is half a mile from the Sloat and Skyline bus stop to the entrance to the pool, which takes me about 10 minutes to traverse. One minor problem I have is that the sidewalk along Herbst is often littered with eucalyptus nuts and branches, so I opt for going in the street. Not a big problem as the street isn’t too busy and it’s wide enough to have room.

cost of the pool; who goes there
The pool membership costs $50 a year and you have to have a doctor fill out the application. Then, the swim sessions or exercise classes are something like $8-10 each. There is not really a “drop in” mentality but instead you are expected to sign up for a 10-pack card at the least.

This high cost, and the difficult access, may explain why I have never seen any other wheelchair users at the pool. It is weird to feel like a damn unicorn at a place specifically meant for disabled people. The physical therapy class are mostly people with injuries or recovering from surgery who have PT for a short time covered by their insurance or Medicare and the arthritis exercise class seem to be retired people trying to keep fit. The other main users of the facility seem to be disabled people who have personal care attendants, or who have developmental disabilities and are there as a sort of day camp experience doing garden work, art classes, and basketball. Lots of wheelchair users around the grounds and buildings but none at the pool at the times that I go there. I can see the community that they serve. And I am an outlier in that community and yet this place is also *exactly* what I need (integrated into my life all the time). I do wish that the pool had some sort of option for low(er) cost access, not for me, but for people in the community who are living on disability benefits who would never be able to afford this and yet who are not “in the system” enough to get bused from a group home on paratransit (as I think many of the people hanging out at the Center are).

The other swimmers I have seen are all infant and toddlers with parents bringing them for swim lessons (with no relation to anyone being disabled). It is just a nice warm pool where they have baby swim lessons, like at Petit Baleen. It is lovely and cheerful to see all the kids coming out of the pool. They always seem happy and calm and sort of stimulated. And they make me happy as I think of the nice memories of when Milo and Ada were small.

Probably the kids’ swim lessons are basically a way for middle class non disabled people to financially support the rest of the facility. (Which also takes donations.) And, I think it may also get funding from places like Target that look for a place from which to hire disabled people for low pay and some sort of tax break; whatever happens there, I hope people are paid fairly.

Extra note on Janet Pomeroy who the Center is named after. Thank you wheelchair sports camp lady!

The facilities of the pool
The building itself has automatic doors. There is a station where you can check in and pay for your session. Also two vending machines with drinks and snacks.

The women’s locker room has a big heavy door quite difficult to open. They need a push button for the doors. Inside, there is a (wet) floored room lined with benches. There are a few hooks to hang coats or bags but no lockers at all and no curtained areas for changing. It is just one big room to change in. Probably that is to fit a maximum number of people (and wheelchairs?) into the room. The outcome of this is that many people lock themselves into the three bathroom stalls so I make sure to use the bathroom outside the locker room by the gym. Aside from this minor annoyance I do feel critical of the situation as the upshot is old ladies who have had hip replacements changing into bathing suits in a slippery tiled floor bathroom stall seems like a recipe for badness. (Add in an incoming and outgoing class of non-disabled toddlers to imagine this completely.) I think they are dealing with this by building a new (unisex) changing area for wheelchair users or people with attendants, in the main area of the pool. (The Abilities United pool also has this.) One last bitch about the locker room, it has no tampon machine. Come on folks. It’s a pool bathroom. What more important place are you going to be where you will need emergency tampons?! But I digress.

There are nice showers in the locker room, one with a curtain but all the rest open. The water is hot. Yay. The locker room has a heavy difficult door to get into the pool area.

From there it is cake; there is another shower for rinsing off near the pool and there are some open cubbyholes to put your stuff in if you don’t want to leave it in the (non-lockered) locker room. I notice that getting into the pool many people have both flip flops and walking canes. Some thought to this common situation would be good and it coudl be solved with another set of cubbies and some sort of cane holder that would take twenty-eleven canes. There is always a pile of flip flops and canes right at the point where the handrail begins! Plus, my scooter unless I am confident about the walk from the shower area to the pool and back.

Herbstpool window

emotions and memories of physical therapy
I can’t imagine how many of the ladies in PT with me manage the trip there or even the walk from the parking lot. It is always hard to remember how that works until I get back into that territory of ablilty. Driving + hobbling. I was there for years.

I remember so many times of “rehabbing” in pools over the last 20 years. At Valley Medical Center in the 90s it was depressing and squalid and yet the warm water was so freeing. I could move freely and learned some good exercises. It was hard to talk with the other people there who were all older women while I was in my 20s with a mohawk and two septum rings. These days at least I am middle aged looking and not unacceptable as a possible conversation partner to ladies who have hip replacements.

It was always an ordeal to get to a hospital and navigate it and also inherently depressing. I have swum at YMCAs, JCCs, many city pools, and so on which I far prefer to going to hospital therapy pools. The public pools are way too cold for me to tolerate. I worked up from 15 minutes to 45 minutes in a “normal” temperature pool where athletic people swim laps, but it’s never a good experience. The SF JCC has the second warmest pool in town, plus a hot tub and a sauna, by the way, but it is extremely pricey as well as being ultra clean, pretty, and posh. The CPMC hospital has a warm pool, and you can get PT from it, so that is an option, but last I checked it was not only out of service but you couldn’t “drop in” extra at all; you have to get on a waiting list for a weekly arthritis class and if you miss two classes they boot you to the end of the waiting list. That will not work well for me. So I am very glad that places like the Pomeroy Pool and Abilities United exist.

I thought over my times at the Betty Wright Center which had really good cameraderie and where I got a lot stronger. I remember starting out at Betty Wright crying uncontrollably and feeling that I could not take it but grimly slogging through. That always happens both physically and emotionally. In fact at Pomeroy I know we all cry in there sometimes. Even if not from pain, it is because it is easy to go about our lives somewhat disconnected from our bodies. Being in the water and having nothing else to do but gently move around, it can be an emotional experience. I am thinking directly about what I can and can’t do, and comparing it with other times in the water, often ones where I was hitting rock bottom physically. I notice consistently my problem is not, “not trying hard enough” it is pushing myself way too hard and re-injuring myself or making everything worse. This is the new era of caution for me. Some of this holding back is possible because of working with a behavioral therapist who is very knowledgeable about pain, disability, and chronic illness. Thanks Dr. C.

(There is also the aspect that doing this 3.5 hour journey means I have to put on a lot of psychic armor to deal with strangers, bus drivers, buses with broken lifts, the Hellish Intersection, people cursing at me for being in the way, people staring, people (nicely or otherwise) inquiring about my scooter or wheelchair, people angry with me for not accepting their “help” properly, and all the other things that make leaving the house an Epic Journey. I armor up and am prepared for it all but it is not without emotional effort and cost. It is never simple. For me to get anywhere, I have gone through this process already and have likely had many challenges to basic equanimity.)

Last fall I could not go into the water without soft ankle braces. It hurt too much to have the tiny currents of the water, wiggling my ankles around unpredictably. Right now I can do a lot of squats and toe-raises and walk back and forth for the whole hour. It’s great. I am not swimming yet as my knees and ankles (and i think back) aren’t strengthened enough. I cannot do things I used to be able to do in pool rehab, like write the alphabet with my foot in cursive. Nope nope nope nope nope nope! But, I have improved my gait (again) to be more even and to weight shift instead of limping or shuffling.

My goal right now is to get my ankles strong enough that I can drive to the pool, park there, and use my manual chair. That would be less physically grueling for me than the 2 hours of bus ride and scootering. It usually takes 3 and a half hours out of my day to get there by bus. By driving, I could be gone from work 2 hours instead. That means I could swim more often. My real goal though is simply to maintain this level of water-walking and aerobic exercise for health, flexibility, and strength without injuring myself. This is already the longest stretch of time I have consistently made it to PT or exercise without messing myself up, and also doing daily PT at home. Huzzah!

A last note, huge props to Pomeroy staff for letting me use a conference room in their office one day last fall as I wanted to be at a crucial team meeting but didn’t want to skip my PT appointment. They let me walk in out of the blue and use their office and their wifi and close the door for privacy. Super nice of them. I was able to give one of their staff all the details about TravelScoots and other lightweight scooters in return. I still feel I owe them some free computer advice or help! But, I thanked them for supporting a person “in the community” (me) in their job and also for helping make Firefox better (ha!) by getting me to my meeting on time!

Random encounters while wheeled

Posted on by Liz

The other day at Hyde Park Pier I was out with the kids to look at the historic ships. It was pretty awesome. We looked at the steam engines and the huge wood shop for shipwright work, tried the block and tackle, read all the signs and sat around staring at boats coming in and out of the harbor while eating ice cream.

I had a funny random encounter. We were loafing around eating our ice cream cones. Me in my manual chair and the kids standing around right next to me. Close enough to be jostling me by bumping into my wheels. I was looking down in my lap at my phone. Some lady swooped into my field of vision, like bent over me with her face looming up between where i was holding my phone and my face. (You have to picture how sudden, awkward, and intrusive that was!) She put something on my shirt, saying “Here you go” in a syrupy voice. OK, what the fuck! I looked down and it was an admission sticker to get on the historic ships. “Uh thanks but…. Ummm….” I tried to talk with her but she walked away too quickly for any reaction to happen. With one hand full of my ice cream cone and the other on my phone, I wasn’t going to be able to chase her! She had whitish grey hair and I think sunglasses.

Ticket lady, if you read this, I’d like to ask you: Seriously, what the fuck was in your mind at that moment?!

I’m trying to imagine what was happening in her mind. I get where you might want to give away your admission pass to a park, or your bus transfer. But would you go up to a total stranger and stick it on their shirt front without any interaction?

No!

Not unless they’re a wheelchair user in which case I guess all bets are off. Kind of like petting a stray dog isn’t it!? Or like, oh hey, it’s the Hyde Park Pier crippled stranger petting zoo!!!

So also, there wasn’t like some indication that I was wistfully gazing through the railings at the park exhibit that was too expensive for me to afford with the kids (who god knows she also probably pitied incorrectly). It was just a plain old pity move full of really weird and offensive assumptions. Like a combination of class assumptions based on my being disabled, and, an assumption it is just OK to come up and lay her hands on some stranger in a wheelchair, and run off. I think in her mind it was an act of beautiful charity. It probably made her day. But it filled me with rage and I couldn’t do anything about it.

I couldn’t bring myself to mention it to the kids as I didn’t want to spoil the mood of our nice day.

If she had just said “Oh hello would you all like a free pass”, that would have been fine but I would likely not have taken it.

I was pleased to find one of the ships had a ramp and was mostly accessible. No one was checking tickets, since it was the end of the day.

liz and milo on a wooden ship

On our way out of the park I told the rangers how nice it was to find an unexpected ramp and get to go onto a ship. They told me to come back another day to the ticket booth and I could get a lifetime discount park pass good for the state and national parks (I think) which you can get if you’re disabled or blind. That was helpful (and nice).

That kind of park pass I will happily take, though I’m also happy to support the park system by just paying admission. Since usually I can’t get around parks and exhibits very well, and making them accessible probably will never happen, the discount or a free pass seems fair !

Another random encounter that came out better than expected. I was greeted by someone who works in a local store I often go to. She apologized for asking and then asked why I have a wheelchair. I swallowed my stock of snippy answers and explained my medical history in front of my child while we hung out outside some bar on Mission and I was covered in grocery bags. *eyeroll* She was asking because her hands and feet go numb and she is worried and wonders what things will be like if she ever needs a wheelchair and how she can tell; her doctor told her probably it is because she uses bleach when she scrubs and cleans. I opined that was bogus and the good thing about doctors is you can go to another one and get a second opinion. It is sometimes easier to forgive the questions inspired by fear and personal motivations when it is truly personal.

But I’m so tired of being a rolling public diplomacy and information booth. I then had to explain to my son that, as he may be aware, I don’t normally explain my medical issues to strangers on the street but in this case I made an exception and felt that she could use a friendly word.

The other people asking me lots of questions lately are cab drivers. Because my smaller size scooters have been broken and the big one I use to get around the neighborhood is too big for the bus, I’ve been taking cabs. Drivers are universally astonished that I have a job, that I’m out by myself, etc. (Even though obviously they drive by people in wheelchairs all the time who are “out by themselves” – invisible ones????). Sometimes they want to know about the folding scooter because they have an older relative.

Welp, it’s complicated. I think the buildup from being patient with most people comes out in wanting to punch Sticker Lady right in the snout though it would have been a waste of good ice cream . . .

Perhaps this rant about minor annoyances will educate a random stranger on the internet and thus save some other person on wheels some hassle!