Category: disability

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.

Slow absorption of history with digressions

Posted on by Liz

I’m still slowly reading In These Times: Living in Britain Through Napoleon’s Wars with forays into Wikipedia or pauses to read a book or two or six by people mentioned in the history. Last night I ended up trying to explain Lord Uxbridge’s leg to Danny who got interested and then read out loud to me from Mr. Dallas’s speech in court to defend Henry Paget (the Noble Lord). (Result: Paget paid 20,000 pounds to Wellesley for eloping with his wife Charlotte.) Readers of Regency romances take note, Paget was married at the time to one of Lady Jersey’s daughters.

Onward to some more Luddite riots centered in Bolton and Preston (land of my ancestors! at least one branch of them! Weavers and miners all, emigrating around 1900 to work in more mills but escaping the mines!) and a long chapter about Shelley and co.

One pause was for Life in the Sickroom by Harriet Martineau, which is AWESOME and which I’ll summarize soon. I liked it so much I found a (cheap!) first edition online – leather binding, marbled papers – Lovely.

I am probably going to pause to read the novel Patronage by Mrs. Edgeworth, but first, a complete departure since I need to recharge my Kindle, this morning in the sun on the porch with coffee, with a real life paper book in hand: From the Legend of Biel by Mary Staton, which I had never heard of till James Nicoll‘s mention of it in a review. So far it’s glorious, weird, trippy, one of those Freak Out in Space books a little like Solaris, as the head of the 4-person expedition to planet MC6 enters the pearl-like featureless dome trying to map the maze within and finally, the center, and some glass holograph floppies which, slotted in, OVERWHELM HIS MIND with story.

book cover with geometric buildings

Why, why, why, would you want to wear a jumpsuit uniform in space and as you explore another planet? They’re always unzipping their jumpsuits (but never to pee) What is wrong with just … what about pants and shirt, space explorer uniform designers? I guess the idea is that in zero-gee you don’t want your shirt floating up but that is why we have tailoring, knits, even perhaps Space Suspenders.

Other moments where someone enters the dome, or the ruins, of the past or the aliens or one’s ancestors: Pern on the Southern Continent (with bonus rocketships), I think one at least of the books by H.M. Hoover, an Andre Norton or two or five (especially the one where they jump around on the colored squares to get in, like Dance Dance Revolution). And so many more. I have to think it is from Lord Howard and the pyramid (The protagonist of Biel is even named Howard – subtle. )

Long reading journeys since I am still in enforced idleness of convalescence from surgery and can’t sit upright for very long and leaving the house (while possible) is unwise and painful. It’s amazing how beautiful the world is though when I do — the bus ride to the doctor yesterday & back again was as wild and ecstatic as the journey into the dome of MC6 — I was early, bought an It’s-It at a cart at the cable turnaround at Powell and sat in the sun in a clean bit of pavement (recently washed perhaps by the new mayor’s power-washing crew) providing entertainment to all as part of the San Francisco landscape. Purple haired woman with a leather jacket sits on the pavement next to her motorized tricycle (decorated with artificial flowers and a unicorn horn), eating ice cream and beaming — small children tagging along after their parents with rolly suitcases drop their jaws and their heads swivel as they walk past or sometimes stop dead in their tracks to stare. I wave like the Queen of Tricycles and try to convey my harmlessness to the parents. Sometimes I’ve been stopped in that area or by the Mint by tourists who want a photo with me. Colored hair is not that strange anymore so I have to lay blame on the unicorn horn. The people waiting in a long line for the cable car ride (where I always think of young Maya Angelou), the guy sleeping next to the railing, the band playing not-great but adequate steel drum, a sunny day…. Endless parade of people going places purposefully. I loved everyone.

A month after surgery

Posted on by Liz

This was a fabulous day. I had more energy, I cooked some things, folded a lot of laundry, and did my project to paint a small shelving unit in the bathroom. With interludes of lying down but this is the most active I’ve been since June and it was so nice.

liz smiling with a paintbrush

I feel more certain that I’m healing up from surgery now. Danny did all the shopping and laundry and Ada helped out with some things and cleaned her room after getting back from a gaming sleepover. Dinner was 2 kinds of congee (chicken broth in one pot and vegetarian in the other) with poached eggs. I also used up Ada’s solstice harvest pears and apples and a lemon making a pear-apple crumble. It is strangely satisfying to just make up whatever I’m cooking as I go (occasionally leading to something inedible) My chicken congee had tomato, bok choy, fresh ginger, cumin, and a lot of pepper. Ada’s vegetarian kind had tofu, soy sauce, some frozen mixed vegetables, shredded carrots from a bag, bok choy, tomatoes… lord knows what else I threw in there but it came out nice. I have not cooked anything other than toast or a microwave dinner for a long time….

I am missing Milo who is back at school (moving back just this Wednesday).

I also left the house Thurs. night for an hour of the EFF Pioneer Awards (nice to see people! and to be out!), Friday (on the bus) for a dr. appointment, and Saturday afternoon to go to the retirement party of one of my comp lit professors, again, amazing to see her and my super wonderful thesis advisor and friends from the program from 15 years ago (!). Lessons learned from going out: I am not yet ready to scooter around town or take the bus. It hurts too much and I need to seriously limit going out, and stick to cabs. (I have to lean heavily to one side when sitting up, including on the scooter, and it hurts my back and also, bumpy sidewalks omg.)

I’m in bed for the evening now reading about the 19th century novelist Mrs. Sherwood aka Mary Martha Butt. From ages 6 to 13 while learning her 40 lines of Virgil per day she was locked into some sort of “stocks” and also an iron collar around her neck with wooden boards to keep her posture correct. Her novels are a bit horrible (fascinating though – and she has a sense of humor – and you can see the seeds of later childrens literature in there). I would like to read a modern biography about her.

Meanwhile, I read just the Wikipedia entry for social theorist and writer Harriet Martineau: https://en.wikipedia.org/wiki/Harriet_Martineau and am VERY KEEN to read her book “Life in the Sickroom” from 1844 which she wrote while she was confined to bed for a couple of years. What horrors will it contain!! But what possible insights that I might actually agree with!!!

These digressions in reading are all from interesting bits of my main book right now, “In These Times: Living in Britain Through Napoleon’s Wars” which seems endless by Kindle-percentage standards, but I am sure the last half of it is footnotes. It jumps between focal points (like Banking, or Weaving).

While recovering from surgery I read nearly everything possible (in e-book form) by Charlotte M. Yonge (who I like better as a writer than Mrs. Sherwood) well worth reading – like Margaret Oliphant. She is especially interesting in writing around the 1830 riots.

I had to just accept that I needed the surgery since I wasn’t getting better without it and wasn’t really able to function well in any way…. Tied to a strange cycle of this abscess unpredictably starting to swell, then a hellish time of waiting for it to burst, then like, feeling horrible but marginally more capable but it started to happen more than once per day. That really sucked. So, I went on medical leave and they de-roofed it (ugh) leaving a giant open wound. Once I made the decision it was a little easier to just switch gears to Very Low Gear, or maybe Neutral, and idle. I prepared pretty well for this arranging everything for my bedside life, cleaning off a shelf that I look at from bed to put some plant pots and extra vases there and a giant rack of in-out boxes for my drawing supplies. And, I slowly drew (mostly while lying sideways) some of my planned scenes of the neighborhood. It is so helpful to have some sort of plan like this. I also laid on the front porch (once capable) in the sunny hour in the morning and on the back porch in the afternoon to catch the last sun before winter. I find it hard to lie still not doing anything – I look around and enjoy seeing stuff but start to want to change stuff, plan things to do, and it is very annoying not to be able to get up. But, this time, I think it’s the best I’ve planned (and had infinite resources…) And best I’ve coped.

Leaving out the days of being glued to news, twitter, Senate hearings, rage-tweeting about Kavanaugh and rape culture, crying, and freaking out and also the 2 weeks of heavy drugs just after the surgery.

An exciting non-event

Posted on by Liz

An exciting event for me but hardly noticeable to anyone else: I not only went to my sister’s house yesterday and managed all the stairs multiple times, but I bravely walked across the street, across a parking lot, then down half a block to a restaurant. So, this is the first time in years I managed to walk on my feet from a place to a different place. Despite the stairs, this was easier at my sister’s house than at me and Danny’s house, because our place is on a steep hill. My knees and ankles are really feeling it now and I am going to ice them a few times today and do gentle stretches but nothing challenging.

I’m going to try doing this again on Wednesday and Thursday if I’m up to it, since we’ll be there again. I would like to work up to walking a block down the hill to Mission from our house, then across the street to one of the restaurants there. If I can do a block and a half on the flat, it seems possible.

Me in lauras garden in leather vest

As I ambled ginglerly across the uneven parking lot I was overwhelmed with a feeling of excitement and vulnerability. Only Danny really understand this. It’s not something I can expect and I can’t be too disappointed if I work up to it (again… for the millionth time) and then can’t keep it going. It is also very limiting even as it’s freeing. I feel free of the slight encumberment and clumsiness of my lovely cyborg exoskeleton. But since I can only go about 1 block, I am limited in what I can do, there’s no casual going a couple of blocks extra or doing errands, I’d have to painfully walk home, get my scooter, and go out again. So if I venture forth on foot, I lose sponteneity and range as well as it being more painful.

Still it has its own special excitement. How wild it would be to show up at the bakery by my house or the nice cafe, strangely unmarked, and order my pastry, several layers of other people’s fuss, emotional reactions, expectations, pity, panic, dislike, mistrust, or hostility, just removed from my day like MAGIC…. as a special and temporary treat. It is truly like going through a portal into a different universe. Of course with my perspective of living in my own universe for many years I don’t respect the deceptive ease of Unmarked Land. Naturally I will still be leaning on my cane and limping so it is not as unmarked as all that. Miles, universes different though.

Six month celebration: Sojourner!

Posted on by Liz

This may look like just a badge in a silly game, and that’s what it is. The “Sojourner” platinum badge in Ingress, for hacking a portal once per day over continuous days without interruption.

sojourner-ingress-badge

Within 24 hours I have to get to a place in real world geography, where there is an Ingress “portal”, a game location you can only affect if you are within 50 meters of it by geolocation services. For me that means I go one block away from my house, in either direction, either up the hill to the Good Prospect Community Garden, or to the corner on Mission to “No Temas, El Señor Está Contigo” which is a mural on the front of a tiny local storefront church.

So to me, my Sojourner badge for hacking a portal every day for 180 days, is also a beautiful marker that I have been mobile and healthy enough to leave the house every single day for the last six months. I’ve been looking forward to this milestone! If I “failed”, it is okay, it means I was very ill, or not physically able to get up and down the stairs, and that happens and it’s not always under my control. (And that will happen again, I’m not getting any younger. ) Some days, it has been a case of “OMG, it’s raining, and cold, and I don’t feel well, but…. I could still make it to the corner and back on my scooter”. The badge motivated me that little bit.

It feels like a nice moment of celebration anyway, I am happy that I’m at this level of ability and mobility. It also take confidence to leave the house by myself when I am at low points. I talked over the idea of “leaving the house every day” as a measure of quality of life for myself, last year with my super nice therapist who works with people with chronic pain and disability. I feel satisfied with myself and proud.

Personally I have to watch out a little with this sort of gamification, for example, having a FitBit made me want to push myself too hard to walk more than was good for me. For personal comparisons of activity level but it may have been negative as well to keep seeing my 900 or 2000 steps compared to people who aren’t disabled. Under 1000 steps means barely walking enough to get to the bathroom and get myself tea and mostly being in bed. (Likely means I am scooting around the house sitting on a walker seat.) Above 1000 means functioning well walking around the house, doing a little housework and so on. 2000 and a flight of stairs means doing a load of laundry in my basement/garage, or simply leaving the house! (“Steps” can mean …. shuffling very tiny steps, weight shifting. Not like striding around. )

The Fitbit’s data tracking was useful and I may try using it again, as it was good to just show a doctor or physical therapist how my usual levels of activity changed, in a crisis. Without that kind of information they may not understand that “using a wheelchair” is not just one state of being and how much varying levels of mobility can impact a person’s life. I like the style of the Sojourner badge a lot as a positive and achievable measure for myself over a long period of time. Maybe I can make it to a year for the Onyx badge?!

Pak protector in utility vest

Posted on by Liz

Sometimes when I’m bitching about joint pain Danny points out I am probably becoming a Pak protector. Uncanny since I really love wearing vests and eating sweet potatoes and would love to be the superintelligent fighting machine protector of entire planets, ringworlds, or whatever, while fixing and inventing things and reading libraries full of books.

Anyway, someone stole my tool bag which was crammed full of many years full of useful things. My mini soldering iron and my tiny level and well, nearly everything. The less useful tools are in the house in a tool drawer if you feel like coming to take them to complete my inability to fix things. OMG! Anyway, I have been slowly researching and plotting my new tool collection. Everything will be either very nice, and tiny as possible so it fits my hand and is maybe super ergonomic, or old, well made, vintage tools with really nice heft and design that I will magically find in garage sales and flea markets. I may go with the technique of having several canvas rolls with pockets, inside a big bag without a lot of separate compartments.

Today I went off to go to Workingman’s Headquarters which is that shop run by two old guys in the Mission (planning to just explain my list of tools and trust to the one of them who is nice’s judgement) I had been planning to stay in bed most of the day but the sun came out and I felt so tempted to wander around. Since the shop was shut I got a burrito and sat in the amphitheater-like area in the back of the 24th St. BART plaza listening to cheerful music and watching people. I nearly got a chair massage but instead I was looking at all the people with kind of janky old wheelchairs and who were having trouble carrying their stuff while on crutches. I took some notes on what I thought people might need for repair or modifications but didn’t go around talking with people, I want to think about it first and try some things out.

While on crutches myself I arrived as many people do at the idea that you can have a drink bottle with clip attached to your pants or belt or backpack loops. Mine would clank around but I got used to it. It is too hard otherwise to carry a drink. I also wore my keys and bus pass around my neck or on a Key-Bak type of device (which always makes me think of my friend Sabina since her grandfather invented it).

I was also thinking of talking with Corbett the other day about putting d-rings and webbing on available bits of wheelchair, and knob things to keep my backpack from slipping off my seat back, and how I was talking with Claire about Design Patterns and how there are mobility/accessibility patterns and antipatterns. Most crutches and many chairs lack places to attach or hook other things. You can go into a bike store and find things designed to clamp around bikes. Some of these work with wheelchairs and some don’t. Anyway, attachment points, or attachability, should be a design pattern for mobility equipment.

When you enter the Cripsterhood you should be issued a crapton of sticky backed velcro, cable ties, duct tape, hose clamps, pvc pipe lengths, and bungee cords along with your Durable Medical Equipment!

My foam padding with velcro strap and buckle hack is still KIND OF working on my TravelScoot front pole. Looks gross but it protects my knees from being bruised on the adjustable clamp. I also have a wire frame water bottle holder I got from a bike shop clamped on with velcro straps. The image in my mind here was that I want several rings or hooks that stick out from the scooter frame, so that I can attach stuff to them. I am not sure what. A beer opener would be a good start.

At the hardware store I came up with the idea of getting some cheap pipe straps, bending them around the scooter frame tubes, and fastening them with eyebolts or s-hooks. I tried it out and it worked pretty well. A 2-hole pipe strap is curved in a half circle and meant to be fastened to a flat surface. Instead I fastened it to itself. The size I got cost 50 cents and the eyebolt a dollar fifty. That is probably cheaper and less messy than velcro in the long run. Now I can hang something from a keyring or keyback or carabiner from my scooter steering column. I may do the same at many points around the frame to see how that works out. The problem is that it sticks out and the end of the bolt is a bit too long. A shorter bolt or a plastic cover to screw onto the end would improve the design.

I also wonder if the bolts might get in the way when people are folding or carrying the scooter. The nice thing is I have not had to drill into the scooter frame and taking off the eyebolts is super easy if I don’t like them.

While I was hypnotized by mobility gear at the BART plaza and wandering around the hardware store aisles I also realized I could fix my loose footrests. The foot rests on my TravelScoot fold upwards for compactness, like folding bike pedals. I often want to fold them upwards on the bus so that the sticking out bits won’t trip anyone. They are floppy and tightening them didn’t help. So, I found some neoprene washers intending to put them inside the footrest joint.

This didn’t quite work as planned since even after I got the bolt out, the pedal itself would not come out. I think if I had several more, and stronger, hands, I could have bent the metal a little and popped out the footrest. Since I don’t have either I just put the neoprene on the outside of the joint on both sides of the bolt. Hey! It now holds the pedal nicely folded upward. But when I look at it, clearly it isn’t going to last. I think one or two metal locking washers would be a better fix if I have to stick to the outside of the joint.

footrests flipped up

I got a lovely new tiny vise grip which is much better than trying to do this with an adjustable wrench or needlenose pliers like every other time I have messed with this beast. Yay vise grip! It’s so cute. The few tools that escaped are in the Mozilla Taiwan bag that I got at our last work conference which had chopsticks in it. Mini hex key with just 2 sizes (one perfect for scooter), 2 screwdrivers, pliers, scissors etc. And now my new best friend the tiny clamping thing.

tiny vise grip

The best way for me to tighten this (keeping in mind my hands hurt and are not strong) was to carefully stick the vise grip on the bolt, set it, then put a screwdriver through the eyebolt and turn it like a sort of handle or lever.

Meanwhile today Danny messed with our servers and Ada and Milo designed a card based combat system for her birthday party’s LARP’s climactic battle. Zach came over to get his packages and we discussed tools and comic books and I cooked him an omelet. His sound engineer guy is now hanging out at Noisebridge and Zach made him a glowing programmable LED sign with his DJ name on it (I only saw photos.) It was a nice day…

If you have tools to recommend to me, please have at it in the comments!

Weird patters

Posted on by Liz

In El Farolito today by 24th and Mission it was crowded but everyone was super smart about negotiating the narrow lanes in between the ordering counter and the tiny narrow tables. After I ordered I went to wait for my burrito by the door and the trash cans and newspaper rack where other people were obviously also waiting for their magic you-win-a-delicious-burrito number to be called since it got me out of the narrowest part of the aisle. Unlike many other crowded situations no one was bashing into me or acting like I was in the way and I felt at home and happy… Everyone just sensibly edging by each other very politely. I think it helped we are all salivating with desire for our food while staring through the sneeze shield at vats of carnitas and beans.

Then from behind! A patter! A rare but hideous, sugary voiced patter didn’t just pat me but kind of slid her arm around my shoulder from the back and down my arm. “Do you need me to move things so you can get out?” she cooed as if I were 2 years old. I recoiled in horror and turned around. What is in this gross woman’s mind! What the fuck! I didn’t have a snappy reply but just said “No I’m waiting for my burrito… like everyone is…” Then a couple seconds later I said “You know, if I needed help to get out, I would say excuse me to the people I needed to get past!! Like people do!” and put some extra WTF into my incredulous look.

I wish the patters would quit their bullshit. Offering help… ok I guess, though I was to any person of sense, I was obviously waiting in a crowd of other people waiting who were all holding little numbered receipts and idly looking around. But what is with the hug and arm slide from behind. Gag me!!!!

As she left I realized that the guy a few people behind me, nearer the door, was with her and she collected him with the same tone of voice and hug and that he was developmentally disabled. I then was extra annoyed that she talked to him like that too and that must be her special “disabled people voice”. I then had a hilarious image that maybe she just interacts with every person that way and is from the Planet of Alien Sugar Hugs. I imagined her sneaking up behind the line of burrito making dudes and giving them a snakey little hug as she condescendingly ordered her burrito. I would pay to witness this scene. Anyway, it made me start mysteriously laughing as I waited for number 93 to come around.

Quick fix for my scooter

Posted on by Liz

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