Category: disability

More Inspector Rostinov novels; farm report; wheels n legs

Posted on by Liz Henry

I am now on book 10 or 11 of the Inspector Rostinov series. The Russian detective lifts his weights and considers his painful leg; his assistant Karpo is monastic and humorless with glimmers of feeling; the other assistants have their subplots and relationships so it is all very engaging. Right at this point in the book the collapse of the USSR happens and of course along with the current political situation (here and globally) it makes me think about “democracy” in a glum way where I wonder if it ever “worked” or the thing propping it up is mostly imperialism. And that’s all I want to say about that!

I love a good long series but also always have in mind that the author must be sick to death of their characters by around book 3 or 4, like Agatha Christie finally writing Mrs. Oliver into her series, a detective novel writer who talks constantly about how much she hates her detective and keeps trying to kill him off.

Of course I also think about the concept of “copaganda” which I wish I had recognized as a young person. While I love a detective novel I can also be at least aware that they are making the police to be sympathetic in a way that at least usually, or systemically, not deserved.

With all those caveats – This series is super relaxing and reading it is rejuvenating. I am also playing a lot of Stardew Valley on the Switch since the 1.6.X release has been out (Nov 5th). Voyager Farm is in mid winter, I have reached level 25 of the Skull Caverns and am slowly building up a small store of jade and iridium. My Meadowlands industrialization has progressed to the point where I will likely start buying iridium sprinklers from Krobus, as I continue my campaign to get him for my roommate. Usually, I build the community center in year 1 but this time didn’t really have that as a goal, so I have a pufferfish and a truffle still to go before it is complete.

Oblomovka is back from Thailand and it is so good to have him back after his way too long trip. He brought delicious Pracha Tai (tea from our friends at Prachatai) and made me a pot of it yesterday which I drank while playing Stardew.

Last Monday I also started a weight lifting class at a local gym that is aimed at women and in particular older or menopausal people who need to build up strength and bone density. My bone density is good despite my years of on and off oral prednisone; I am super flexible, have great balance, but my cardio is not great and my strength also not great. Though, I can swim a decent number of laps (for me)  where decent is like, 10 at best and then I can do more after a pause if my ankles and knee permit, but I usually don’t. So, weight lifting!  The gym is aggressively pink and has flowers everywhere on the wall and big fake flowers  on top of the weight racks and machines.  I do not need flowers to go to a gym, but I think they are useful here to filter out really sexist or anyone infused with a lot of toxic masculinity. Indeed, there was no grunting and sweating and judgey macho BS going on. Hurrah!

I got a very pragmatic instructor, M,  who I felt really comfortable with. No weird gender stuff. I wrote down all the sets that we tried together and made them into a weekly spreadsheet so I can check off doing all the things. For some exercises, M was maybe a bit too ambitious for me so I notched it down a bit or just failed to get all the way through the sets or the groups of reps. My little hand weights are 1, 2, and 3 lbs and I can combine them in one hand since they are soft with little straps. (So I am bicep curling 5lbs, and upwards pressing 6.) And, day 3 I only did the stretches because I was hella sore and could not cope. I had to switch from desk pushups to wall pushups as well. I think if I do even part of the checklist every day next week, I will catch up to where she thinks I might have been on day one!  We’ll see! For now, it feels good. The one thing I am “good” at is a rowing motion that uses my manual wheeling and kayaking / swimming muscles so I am able to unexpectedly “do” 25 pounds.

One of my little pretend goals, which I don’t take too seriously, has been to walk to the corner, buy something or sit somewhere, and walk back. 3 years ago at our old house — on the same steep hill we are on now — That was something of a dream and I would get kind of close and then not be able to do it. But now, I can do that half block walk and back on a good day. This has been a really long arc from my 2011 ankle blowout where I spent a year not being able to stand up without CAM boots. And let’s not forget the hideous pain like snakes squeezing 24/7 around my ankles and legs and feet.

Anyway, without having any REAL goal, I realize I have greatly improved my walking ability in the last few years. It is very slow and not linear. I spend weeks or months being able to walk inside the house now, with interludes or weeks or a month or so in the manual chair in the house.  (The house is now easier for my chair, too!!! With the bathroom floor level with the rest of the house instead of having an inch drop. Try wheelie-ing over that in the middle of the night half asleep when you need to pee. Ugh!)

I now try to just IMAGINE walking just a bit further than the half block hill to sit in the cafe, or buy something at the drugstore. (Standing up to wait in line part is intimidating.)  I try to imagine walking to the bus stop, getting on the bus, going somewhere that is right next to another bus stop, then crossing the street to the opposite stop to bus home. Can I do it? Could I do this limited “go one place where I know the number of steps I will have to take” trek, in a cab? I am only just starting to imagine it. Can I do it without setting my ankles back a year, or putting myself back into the Snakes Squeezing Walking Boot territory? That is my real fear I guess. But it also feels inherently scary, like I am about to leave the house defenseless and naked. Keep in mind I dream myself in my wheelchair or powerchair, and in dreams, when I realize it isn’t there, it is a nightmare that usually wakes me up. The thought of trying it brings up huge, weird, inchoate FEELINGS. They are not unfamiliar because I have done this before (in 1997, then in 2009 or so), had some amazing bipedal times, then WHAM, in a world of hurt.

a cartoonish outline drawing of a quadruped with the caption "defenseless animal"

 

People told me slow my roll

Posted on by Liz

The song stuck in my head when I woke up this morning was Pursuit of Happiness by Kid Cudi. A brilliant song (and album! listen to it all at once in order) and I also love the dreamlike music video where he keeps getting up off a couch and falling through windows and doors. (There is a different “official” music video that is oddly boring and standard.)

People told me slow my roll
I’m screamin’ out, Fuck that!
Imma do just what I want
looking ahead no turning back!

– Brought to you by the couch where I have my feet up and my knee in a stabilizing wrap

I flew to DC for a summit at Gallaudet on disability, tech, and labor rights! Went to the Museum of African American History and Culture, and the Natural History Museum! It was a lovely trip & I met so many great people- and will write that experience up soon.

Back home again, I was not feeling up to even travelling across the bay, but did my talk for Common Tools via Zoom. Another great gathering where I met interesting people and learned some things.

Last night went to Writers with Drinks, the Banned Books edition, which was also great!

I *will* have to slow my roll any moment now but not yet, lord….

Whill battery hack night at General Lithium

Posted on by Liz

This week we held a little powerchair hack night with GOAT, Justin from General Lithium, CriptasticHacker and associates from Spokeland, Morgan from CIL, and more friends, to explore the battery technology of Whill Fi and Ci powerchairs. A Ci battery teardown is in progress along with an investigation into the Fi and its charger.

There was also knitting, and an adorable small support dog on a fluffy cushion. I had a cool moment realizing how many of us knew, or had worked with or learned from, John Benson (aka, Cripple A). I was thinking John, a fabulous human being, should get an award, and Morgan said, what he would really like is a parade. My mind took off with this great idea! What if we had a fabulous parade in his honor, with musical instruments and punk marching bands and a zillion wheelchair users zooming around?! We will also hopefully see him and some other repair and DIY wizards at our upcoming events!

a probably AI generated image of a futuristic looking glowing powerchair on a glowing disco platform

We didn’t do any formal talks or introductions, but CriptasticHacker kicked off by talking about one of his finished projects, the WBSW, Wheelchair Battery Spot Welder!

We have learned some things from cracking apart the Ci battery.
– It has hidden screws under the bottom corner pieces
– You still have to pry it open with a screwdriver and mallet
– The battery is encased in several layers of totally sealed plastic for waterproofing
– And under that it is podded, 5/6ths encased in rubbery gel stuff so you can’t really take it apart and hack it well.
– It has 1/4 kWh

For the Ci, our best option to soup it up (as it has fallen out of warranty and parts don’t seem to be readily available!) may be adding a new battery or batteries, which we could do for about $400 per kWh. We could easily fit 2 of those under my seat in the undercarriage basket. Then those could hook up to a new replacement (V)ESC (Electronic Speed Controller) which we then connect to the motor (managing the voltage etc. so it will be compatible).

For the Fi, we were able to access it a bitbetter and Zach, Henner, mjg, and others had a look with digital microscope, logic analyzer, etc. To figure out what is going on with the power management . Zach will describe all that on his hackaday.io page!

three people gathered around an electronics workbench

It was interesting to see the different approaches in play at the various workbenches. The laborious and intensive work needed for detailed understanding and reverse engineering is in some ways a philosophical stance, of learning, reuse, and conservation, but in other ways, a factor influenced by resource constraints. In other words, necessity is the mother of the meticulous teardown! The people with capital, on the other hand, had less patience with this approach and were ready to throw resources at a problem, and use new (or repurposed) stuff to do complete workarounds, or simply throw it all out and invent something new that would be more rapid to get working, even if unlikely to be elegant or refined in the first prototype.

There was a long discussion on how to make a kit to convert manual chairs to power with Justin and Morgan. To that I added some wild eyed ideas but also a pointer to these interesting, cheap, DIY open source wheelchair designs and to Whirlwind Wheelchair. We see people every day in the Bay Area who are struggling with clunky or broken chairs. It is a good topic for future exploration – what other conversion kits are out there? What were the problems and pitfalls? How feasible is it to to come up with a maintainable, cheap, design for such a thing?

I learned during the event that ESC (pronounce the letters in it) is an electronic speed controller (the thing I normally just call “motor controller” with a vague handwave.) VESC, frequently mentioned by our hardware hackers, is a particular technology – or we could call it a movement – that I think looks amazing – for “flexible, efficient, and reliable power systems for your platform”.

Another cool nexus of ideas that came up: Whill chairs come with Bluetooth and a phone app. You can control the chair from the app, configuring it with one of three pre-set acceleration curves. Could we write a new app to communicate with the chair and program it in different ways?

You can also steer the chair from a phone or tablet screen via Bluetooth. I have never actually used this feature. But we can see that airports are starting to explore using Whill chairs on auto-pilot, to take passengers to their gates. Using programmed routes but also LIDAR, like robot cars! That put a gleam in several people’s eyes. Actually, it put a whole range of different and hilarious facial expressions on everyone’s faces!

And as one more note for future investigation: The chairs also appear to log and send diagnostic information to the manufacturer. I’d certainly like to see that traffic! I wonder if it is encrypted and what the heck it is sending!

I’m really looking forward to Grassroots Open Assistive Tech hosting more electronics and hardware tinkering nights, as well as other DIY gatherings!

Overheard:
(just for fun – it was a lively event!)

“I’m so impressed with the fact that you bypassed the VMS…. Expert move”

“….. and then it would explode!”

“That motorcycle [points to motorcycle in a giant pile of e-bikes] has a battery bigger and more powerful than a tesla powerwall. and it goes 160 miles an hour! [gleeful laughter]”

“You can control it via bluetooth? Woah!! That’s my kink!”

“There are no standards for bike wheels, so there are 4 different kinds of 26 3/4 wheels and none of them work with the others!”

(Justin): “I’m gonna take your 1/4 kWh battery and give you THREE kWh. We can just strap the batteries under your seat.”
(me:) “Oh, great! I’ve always wanted to be launched into fucking SPACE with my ass on fire!”

“Is this illegal?” “No surely not!” “Well, maybe? But we’re just taking things apart, and looking at how it works! How can that be illegal?”

(FYI: This can be a complex question! You may want to read this Coder’s Rights Guide from EFF as a starting point. )

More pics from the event:
Wheelchair battery hack night at General Lithium

Thanks to everyone who showed up, chatted, tinkered, and especially thanks to our congenial hosts, General Lithium – they are a battery tech company, but they also have a nonprofit wing that runs this maker/coworking space in the heart of San Francisco. Have a look at their events page and membership information!

Disabled Ecologies

Posted on by Liz

Experimental liveblogging! I’m in Berkeley at Pegasus Books for Sunaura Taylor‘s book event for Disabled Ecologies. Sunaura is here in conversation with Yomi Young from the Shelterwood Collective.

I have been reading the book on Kindle but like it so well that I want a physical copy too!

yomi and sunaura with microphones at front of a book lined room

You can read more about Yomi and her activist work in a zillion places but check out StoryCorps and maybe this article on the DJCC’s work early in the pandemic.

As Sunaura started her talk it only just now hit me that Sun-aura = Sonora like the Sonoran Desert. Oh! How did I miss that.
sunaura with microphone alongside an ASL interpreter

Crowd instantly on board with Yomi’s joke about doing some comedy performance art where they try to pass each other sheaf of papers in crip time (miming dropping papers and scrambling with hands)

yomi in powerchair, with the microphone

Sunaura reads us a short section from the introduction, Age of Disability. “Environmenal destruction is a story of disablement.” (Of people and of the land). “Mass ecological disablement of the human and non-human world.” Her story and her research are deeply rooted in Tucson’s history.

I lived in Tucson briefly – only for a few months, but I loved it and the desert and its life very much! Good memories of my many visits (with membership) to the Desert Museum, geologizing all over with Halka Chronic’s classic Roadside Geology of Arizona, and sneaking through the weird ruins of Biosphere 2!

A main point of the book is that just as disabled people have adapted and created ways of being, living, healing, doing care work, and finding joy, we can, or must, do the same with our relationship with the land.

Yomi mentions being blown away by the balance of philosophical discussion and personal history in the book. She asks Sunaura, Why now? Sunaura replies, she knew she would write it someday and her whole career has been leading up to it. And it has taken her 9 years to write! Her own life is entangled with the narrative of pollution on the southwest side of Tucson near the air force base and Hughes facilities. Her origin story gives her the roots of thinking about disability and nature. Not just her individual problem but that it is a political issue caused by systems of harm, racism, war, etc. and impact a whole community. Injury to nature is harm to all of us humans.

(It is like 1 million degrees in this bookstore as we are a large crowd sitting on a raised platform (there was a lift). My kingdom for a fan, or the space to leave and find a bathroom to remove the long underwear I unwisely wore so I would not be cold on the way home. I also regret the woolly socks. )

Yomi talks about the way the book is constructed. She loves how obsessed with aquifers Sunaura is. The book itself has an aquifer! Which has this nuanced way of organizing information. The pages of the book have , running along the book, an aquifer with extra explanations!

Aw I love this. Yomi has the soul of a poet. And one that admires huge nerdiness. Yay!

Sunaura says this is her favorite question because she loves aquifers so much! She talks about understanding aquifers as relational and as connected. “Magical holders of ancient time.” Unimaginable amounts of water under there, fossilized water.

She notes that because she doesn’t use her hands to read, she doesn’t like footnotes at the end of the book. So the running footnotes felt better to her and metaphorically became parallel in her mind to the underground running stream of information underlying the book.

Yomi says the book is an important one for disabiliyt studies but also for the environmental movement as it is not often Yomi sees environmentalist advocacy or research that includes disability – She feels it is a gift to our community. Sunaura has blown her mind with the new framing of community, disabled ecology.

Sunaura takes that idea and talks about disabled ecologies and communities. When she returned to Tucson as an adult she was following the trails of disability. The pollution and contamination left a trail of people, of wildlife, who were harmed. Wildlife was drinking from the unlined, uncovered pits. The trees died. And the aquifer was permanently altered. Material injuries didn’t just impact humans. Disabled Ecologies is in some ways a mapping project. (You can map not just where the weapons are made, but where they go off.) Disability not just a personal lived experience. She talked with many people and there were so many narratives of disability and illness, in public health, in community activists, in litigation, and these narratives – and mobilizations were often racialized in various ways.

Another short reading – from the chapter The Ground Beneath My Wheels. “What was I to make of this patch of land…” She felt a sense of solidarity with the injured landscape and was drawn to get to know it just as she was drawn to get to know the human communities. “How was I to write myself back into nature?” She then reads a quote that mentions Yomi and her work! (Audience goes oooooh!) Sunaura then reads a bit that mocks the hell out of Edward Abbey and his misogynist, ableist, colonialist writing. (Quotes about possessing a beautiful woman; and a bit where Abbey exhorts everyone to get up out of their motorized wheelchairs. (Audience laughs and boos; I have double flipped off the air for good measure. Cartoonishly bad!)

Knowing an aquifer wasn’t hindered by (in)accessiblity – it needs research, imagination, and understanding to become intimate with the aquifer. “The injured underground became a sort of companion.” “The desert I desired was bursting with community.” “Knowing the desert was not nearly as important as learning to be responsible to it.”

Yomi talks about her own work about land and disabled embodiement. That disability is incompatible with nature – this is a lie – And that natural spaces must be pristine and untouched – that we (disabled people especially but all humans) damage and corrode it. We who have been harmed should be leading the thinking about how to heal together with the land.

Yomi asks Sunaura about Mexican American communities who fought so hard for the environmental damage to be recognized. They continued naming it over and over and confronting environmental racism in a way that was so effective. Outside of movements, we don’t often hear these stories, it’s all Erin Brokovich where someone comes in to save the people. The skill this community had to use every possible tool at their disposal – including impact litigation – is great.

Sunaura – Talks about Yomi’s work with Shelterwood. She started off this project not knowing about the decades of incredibly environmental justice activism in South Tucscon. They should be given credit for the aquifer protection laws that were passed in Arizona. They were really badass but even in Tucson they are not well honored. Decades of contaminated groundwater. the city officials did nothing. No investigation, etc. But the community knew something was wrong. And then in the 1980s as they mobilized the City blamed it on their “lifestyle” or their diet, racist ableist ways to deny responsibility and making the community feel it was their own fault. This is often something that happens with disability!

Then at some point people were like, cleaning up the environment is one thing but right now we all need health care!

Time check! It is nearly 7, yay read the book! Any questions!

Audience m ember asks What happened then! (We all holler, you have to read the book!) Sunaura and Yomi: The story continues. For a while, they got a health program at a clinic. They won a historic groundwater protection fight and passed strong legislation. But the continued fuckery of the system is still harming people. And they are fighting for things they need to live and thrive as disabled people. There is no end.

Yomi: It never ends. And it’s very important that we don’t leave anyone behind. We don’t stamp out disability. It’s part of the human condition. It’s about, how do we live with disablement. Not leaving bodyminds behind, moving together, at the pace of our most marginalist and most disabled. That’s what is really beautiful about it.

Sunaura: it is a hopeful book and the framing of disability is a hopeful one. i know from the beautiful expansive world of disablity community . how can we make that reality one for the non human world as well?

A really lovely interview and talk, and I look forward to actually finishing the book!

So far, it makes me think about what I was trying to say in my short essay here, “Thoughts on AI, comradeship, ethics, interdependence” which I rewrote and made a bit longer for my zine Tabahtea Triple Junction. There, I started in a different place, with some recent discourse on AI and sentience, and tried to recontextualize it to the relationships we build with non human things including land. Sunaura’s book is crystalizing a lot of that thinking for me in a very useful way!

Coincidentally I also just re-read some of the Haraway she mentions and my friend unixjazz had messaged me a few days ago to say he found an OG copy of Sandra Harding‘s The Science Question in Feminism from 1986 while he was on vacation and snagged it for me (another book mentioned in Disabled Ecologies!) So maybe it is no wonder we are thinking about similar issues as we imagine the underground ebbs and flows! I will be going to unixjazz’s Common Tools event later this month to talk about DIY assistive tech as a liberatory idea with ecological connections, too!

Take the 49 indeed

Posted on by Liz

Tonight on the bus I met a really nice lady named Lulu who was reading a Mayan/ English phrase book and had some stunning eye makeup. We chatted about antifascist things and she was telling me stories about the 60s and I dunno, hanging out with Jefferson Airplane and all that sort of thing and I guess she taught herself some Mayan back then because of trying to work at a fancy bookstore where they didn’t hire her but did give her a free book on Mayan?! The one that the Mexican government published in the 1930s. I can’t remember all the things we talked about and have forgotten interesting details like the name of the specific bookstore, but I did give her a tiny zine while also saying with regret that I have no time to a) actually learn Mayan b) come to a labor organizing thing in North Beach of Mayan and Mam speaking restaurant workers! So maybe we will meet again. I thought of inviting her to the Soiree (since she had a walker, she would fit right in) but she was on her way to the labor thing. I also felt a nice feeling like OK maybe when I am 75 I will be riding the bus still with all my flamboyance and reading interesting books and meeting people. I hope so!

Onward to my event which was the “Wine and Chocolate Soiree” fundraiser (a criperati thing) where I got to have nice conversations with some of my friends who work for that org while drinking champagne and dipping tiny creampuffs and chunks of poundcake into a chocolate fountain in the Green Room above the opera house. THAT IS JUST HOW THEY ROLL. once a year they splash out and have a little gala. Maybe nonprofits get to rent it cheap. So I’m hanging out with Vince and his friend Ben and they told me about an accessible “ninja” course they made at some school in atherton (?) and then we were coming up with the best ideas for a wheelchair driven remotely with a glow in the dark life size Halloween lawn decor skeleton and a sign that says STILL WAITING FOR UNIVERSAL HEALTH CARE or whatever, that we would drive around town. Vince said to look up something from brooklyn called Devil Baby where they haad some sort of prank stroller where you go look in and YAAAAAAAH DEVIL BABY pops out. OK!!! Time for another glass of free champagne!

Then this lady comes up to me and goes Oh is that a Pansy Division tshirt! Yes it is. Oh I played with them once! Oh really what was your band. Well do you know who I am, I’m J* L*R*y! I started laughing uproariously! I am sure my face was doing many strange things that I had zero control over.

Anyway, I blurted, Oh, that’s so highlarious!!! Because, I’m like, a micro niche famous hoax identity debunker! Hahahaha!

I was treated to some backstory which I mostly knew anyway because I do have a little side hobby sometimes of being interested in people’s (literary/blog) hoax identities!

So, that happened….

A few creampuffs later I dipped to return to the 49 bus stop where unfortunately a man was laughing to himself insanely with his pants down, jerking it in the middle of Van Ness and MacAlister right across from City Hall. I had some conflicted thought such as, well, he is just a sad and unhinged person who really doesn’t seem to know much about what is up, and he isn’t like, LOOKING at anyone, hes just like staring off into space in the other direction and guffawing? But I don’t really want to ride the BUS with him tho? I decided it would not help to go to a different stop and I’d just be rolling the dice for something weirder and more bad to happen! So he got on the bus near the back, and I got on with the ramp at the front, and I kept an eye peeled and sat on my folding cane in case I needed to physically block anyone, and all was well (he got off at 16th and the rest of the bus was peaceful)

The end!

San Francisco wheelchair repair program

Posted on by Liz

If you’re out on the street and your wheelchair breaks down, you need immediate help. (You can’t always rely on Love and Magic!)

And similarly, if you’re stuck in your house because of a flat tire, wobbly wheel, bad battery, blown fuse, or whatever mystery problem your wheelchair has, what happens? In the East Bay in the Bay Area we have the great non-profit Easy Does It, which will come pick you up and fix your chair for free. (Shout out to long time repair expert John Benson, who is an amazing person and who supported their program for many years with his Secret Wheelchair Parts Warehouse!)

Now, finally, in San Francisco we have the Independent Living Center SF Wheelchair Repair program that does something similar! I went last week to the ILRCSF launch of the program and hung out with Vince Lopez, who is an experienced repair tech and all around great guy. Lana Nieves who heads up the organization welcomed around 40 of us to the spacious conference room, Vince talked about his experience as a tech, we toured Marisol’s assistive tech lending library, and also heard from Michael from Pride Mobility who was there to offer whatever resources and connections he can provide.

a row of masked people in a conference room posing for a group pic

This new wheelchair repair center is funded by San Francisco Disability and Aging Services and is available to San Francisco residents, for emergencies and repair visits within the SF city boundaries. The repair program has limited hours (I think working daytime hours) and you can request either emergency help, or schedule an appointment, by calling their number at 415-609-2555 or emailing info@ilrcsf.org. Vince will come to you if that’s needed with a bag of tools. He can also provide rides to a safe location where you can transfer, in a wheelchair accessible van ride (provided free by Waymo) and even a loaner chair, powerchair, walker, or scooter if he has one available.

a man posing next to a row of loaner rollators, manual wheelchairs, and powerchairs

The program is also supported by many wheelchair manufacturers and by MK Battery. (You can get your batteries replaced! Free!!! At least for particular lead-acid scooter and wheelchair batteries they have stocked.)

shelves with new wheelchair batteries in stock

One last nifty service, you can get your wheelchair washed down completely in their portable washing station. I noted it looks like something that is not too hard to build, made from super-sturdy plastic tarp/map base, PVC pipe, shower curtains, a hose, and a pump to drain the water out. (This kind of setup can be used in a kitchen or even a yard for people to wash in if their own bathroom lacks access.)

people in a conference room looking at a wheelchair sized portable wash station

Murderbot’s spa day!!

After the event I got some help from Vince back in the shop. My Whill Ci front fenders break often, I’ve gotten them replaced several times, then lived with the brokenness and loud rattling for probably over a year now, sometimes temporarily fixing it with duct tape and Sugru.

Vince called Whill support, got them to email him the service manual (which I’ve asked for for YEARS and haven’t gotten!) and we got down on the floor to pop the wheels off and figure out what was wrong. While I was on the floor scooting around on my butt, I took the opportunity to wet-wipe the dust off the entire front of my chair.

a powerchair frame up on a jack with its wheel off

Some foam tape, new screws, blue loc-tite, and some cleaning, vastly improved my broken fender and wheel situation. More calls, a quick trip to the nearby hardware store, and a lot of fiddling around fixed my chair! (I got to try a loaner powerchair while all this happened!) And Vince is continuing to investigate if he can wrangle a replacement joystick controller out of the company — another thing I have asked them for but he is apparently the wheelchair support tech whisperer, because he got actual help incredibly fast!

(While I get told to buy a new Model C2; sure, like I just am going to drop 3500 bucks when I could fix my current chair?!) Fortunately now we have California’s new Right to Repair law to support our efforts to maintain our incredibly critical assistive tech! So when I do get a new powerchair eventually, the manufacturer will have to keep its parts available for at least 7 years.

My chair’s fenders no longer rattle, which is great, so I can perfect my technique of me + Murderbot sneaking up on people on the sidewalk!

Funding for Disability Justice & Tech!

Posted on by Liz

Are you working as part of a U.S. nonprofit, on disability, justice, and tech? Read this to find out how to apply for DIFxTech grants! The deadline to apply is May 29th.

About the ideas behind DIFxTech grants

DIFxTech funding supports nonprofits working on disability inclusion and justice as it intersects with technology.

As program manager for DIFxTech, I’m doing this work while keeping the principles of Disability Justice in mind,

And the ways we can use tech for good, for our collective liberation, as well as how we need to fight against its misuse.

We wrote our Request for Proposals in collaboration with a committee of other disabled advocates, activists, leaders, policy wonks, researchers, rabble rousers, trouble makers, writers, artists, and nerds,

With funding and support from the Ford Foundation and MacArthur Foundation.

Who can apply

  • Nonprofit organizations in the United States,
  • Where the organization or program is run by and for people with disabilities, and,
  • The organization or program works towards transformational change

How to apply

There are several ways to apply for DIFxTech funding.
The most common is to make an account on the Borealis portal and select DIFxTech 2024.

Other ways to apply

  • JotForm application (may be better for screen reader users)
  • Video or audio formats if that is your preference or access need

DIFxTech can provide the application form in other formats upon request.

Details of the Request for Proposals
If you take the time to read the full request for proposals and FAQ, that will help you decide whether to apply.

And for extra background:

If you have questions

Please, first read the Request for Proposals document!

For further questions or discussion, contact difxtech@borealisphilanthropy.org

What makes access amazing for you?

Posted on by Liz

I was thinking about event accessibility today and events I’ve been to as a wheelchair user. There are bare minimums of accessibility that mean I can get in the door, and usually that’s what people mean when they tell me their space, or event, is wheelchair accessible. A level entrance, a lift or elevator, maybe some specially marked off seating area. But what makes it not just possible, but a good experience? A great, or amazing experience?

I can list some of those things that kick it up a notch!

Good information. Tell me about all the access needs you have considered, whether they come out accessible for me or not, or you were able to mitigate them or not! Just say it as part of the event announcement. It’s a great jumping off point for me to ask deeper questions.

Level entrance that doesn’t depend on a lift. This is about my feeling of security and confidence. Am I going to encounter one of those hellish, clanky lifts that is locked and no one knows where the key is? Is it going to be broken? Is it going to break while I’m in it and a restaurant full of people are staring at me?!

Spaciousness. There is room to move. I can go into a room, and then freely, without fuss or disruption, get out again! I can sit with my friends, whether they are wheelchair users or not. Tables are far apart. Aisles are wide and not blocked by audio visual equipment or people’s backpacks. More than one or two wheelchair users can be in this space and move around and feel FREE.

Bathroom access. This should be obvious but sadly isn’t. Can I get to a level entrance bathroom? Can I do it without going two buildings over and 9 floors up with a freight elevator in between? If not then I don’t even want to be at your event. Is the path to the bathroom clear or will I have to bulldoze my way down a twisting narrow hallway full of mop buckets?!

Community education and participation. The event organizers or hosts mention things like keeping aisles clear and the community understands the reasons for it!

Reachable food and drinks. It is a downer when there’s a gorgeous buffet for your event but it’s up on a weird little dais that has stairs, or it’s so high up I can’t see it from my wheelchair. Yes, people will help me and get my food but it just feels good to be able to independently browse and decide, at my own pace. I can deal with a bar counter height drink ordering experience, and that’s fine, but it’s always nice if there is a low area too and this becomes more important if you are inviting multiple wheelchair users to your event! Decrease the awkwardness by having some low height counter space.

Some seating for other people. It’s a good idea to have this anyway for walking people who get fatigued, but if you make sure there are at least some chairs, that are moveable, then it also means I can get into a space where I can talk to walkies without craning my neck for hours to look up at them.

Accessible presenter setup. Is there a stage? Am I a presenter? Might I be winning an award ? (I like to think so!) Then please make there be an accessible spot for a presenter, a podium or chair, a microphone, place for me to put a laptop and control slides, in a way that isn’t horrible or annoying. I have crawled on stages, I have been lifted onto stages, and I’ll do it but it’s not a great experience. Conference hotel wants to charge you 10K for ramp onto a stage? Maybe get creative with it and at least make there be a level, alternative presentation setup that doesn’t suck.

There’s probably more, but those are the top ones that come to mind!

A thought on current trends in transphobia

Posted on by Liz

As I read Erin in the Morning today citing a lot of pearl clutching freakouts by Republicans about “sex change surgeries on children” (which, by the way, isn’t a thing) in order to drum up hatred and fear of trans people for their own political power grab, I was reminded of the Ashley Treatment.

In 2007 or so there was a public controversy over this procedure that I don’t think was limited to this one girl in Washington. In it, hormones and actual surgery were used on a disabled girl by her parents for a few reasons. They wanted to make sure she didn’t get appendicitis (which I think was probably reasonable); they felt that stopping / slowing her physical growth (via estrogen patches) would help them remain able to care for her in their home since they would be better able to lift and carry her; and, they got her a double mastectomy and hysterectomy because they argued it might make her less likely to be raped (and impregnated) by future caregivers. (Plus no painful cramps or annoying to your caregivers, menstruation.)

Hold up now!!!

That has so many things wrong with it I don’t even know where to start!! For one thing, as if young children don’t get raped or as if not having breasts made you less of a target. I mean you can not have a vagina at all and still get raped. But, anyway….

It has been on my mind today as I think about this ACTUAL surgery and hormone treatment on a very young girl, who had no choice or say in the matter, actually happened, with no giant freak out from the right wing.

Interesting isn’t it?

And, thanks to F.R.I.D.A. and other orgs like DREDF for fighting against the idea that it’s OK to so high handedly modify the bodies of disabled people without their consent.

Pet peeve about local tourist advice

Posted on by Liz

When I am skimming through the various San Francisco related subreddits, there’s one kind of post guaranteed to get me commenting. It’s when someone asks for tips on where to bring their relatives who are elderly and frail and coming for a visit. The responses are almost uniformly ridiculous. Someone is wrong on the internet! I have to intervene!

The kind answers mean well but have no concept of what disability or frailty actually mean. Someone can even specify, my grandma is 95 and can only walk maybe 100 feet, and has a broken knee.

Inevitably there will be advice to take great-grandma on a day long trip around the entire Bay Area.

Sure, just drive 2 hours and then have a 1/4 mile walk at Henry Cowell park! Go the Palace of the Legion of Honor (not horrible advice, but just getting into the building even from the disabled parking spots (and there are only 2 spots) is way more than 100 feet. Blithe advice to rent a wheelchair or use the museum chairs!

I know people want their relative’s visit to be special and I totally respect that.

I guess there are a lot of assumptions to break down:

– An elderly and frail person who may be in some amount of pain, will enjoy a day long outing where they have to sit up in a car
– They even give a hoot about seeing the sights. They are probably there to see you. They have seen a bridge before! Maybe even they’ve seen a lot of oceans! Take them to tea and let them have a nap! Order take out! Jeez!!!
– They just flew here (difficult enough) to SF. Don’t then expect to drive them to Monterey or Pescadero or whatever. That is a lot of traveling time!
– An 85 year old with a limp and has a bunch of health problems is able to do the same things as a 25 year old who has their ankle in a cast for a month and zooms about with a knee scooter. No! Very unlikely!
– Taking the ferry. Always gets suggested since it sounds nice and sedentary and you see the sights. I adore the ferry, but it means a lot of walking and standing in line. It is not a short or trivial distance. I would not be able to do it at all without a power wheelchair. Kind of a bad idea depending on the location (ie, SF, no – bad idea. Richmond, actually, there is parking super close to the ferry terminal but it is still a hike from the car, then up and down those ramps onto the boat.)
– Wildly underestimating distances, because they are trivial to you and you don’t notice them
– Going somewhere loud, overwhelming, and crowded where you have to walk a lot and there is not anywhere to sit (for example, the ferry building – it’s great but be sure you know the walking capacity of your relative)
– Doing all of the above but also adding in some small children. Sure, do all that with some toddlers, sounds like a blast????? Think of the little kids as people with completely different access needs.

Now obviously there must be super energetic adventurous 90 year olds who are game to hop on the cable cars and hike around Muir Woods and so on. If you have one of those as your visiting relative you probably know it!


Fun outings for visitors with limited mobility

So what would I suggest in the cases where someone is visiting and has limited mobility, but no assistive device other than our friend, the automobile? I suggest the following, because these are things that I like to do, and can do, when I’m not walking well but also not using my wheelchair (usually because I don’t feel like loading a giant power chair in and out of the car trunk).

– Pick up or make nice picnic food. Drive somewhere close by, and scenic, where you can either sit in the car, or there is a park bench like 10 steps from the car. Then, and I cannot stress this enough, go home and chill out.

– Land’s End/Sutro baths overlook. You can get out of the car at the Sutro overlook parking lot and it is like, less than 10 steps to sit there on the wall or on a nice bench. Bring a thermos and some cups and have a little mini picnic. Take photos. Very scenic. Bring a bird identification guide (i like the small laminated ones with the most common birds) or a nice map.

– Drive through San Bruno mountain, end up in McLaren Park and have a picnic anywhere you spot a nice bench walkable from the car.

– Fort Funston if the idea of watching people hangglide is interesting to your visitor. The wooden overlook/boardwalk is actually a bit far of a walk for our 100-foot-limit person. Instead – you can either sit in the car right by where the hang gliders take off, or bring folding chairs and set up where you can see them. No need to really walk down there!

– Pacifica Pier Chit Chat cafe. It is tiny but kind of exciting if you like piers and fishing and all that.

– Pillar Point harbor, a little more of a drive but not too far. Barbara’s fish shack is my favorite, and has picnic tables and indoor seating but if there is a line just go to sam’s chowder house. Lovely harbor views, working fishing harbor.

– Consider cab directly to where you want to go if it is a restaurant and then don’t assume you are doing another thing. Do one thing! Then go home! Rest! Relax!

– If you are doing something where you plan to drop off your relative and pick them up think about whether there is anywhere for them to sit while they wait for you. Make sure there is and make the walking distance super minimal. Scout in advance if you don’t know. Also think about where the bathrooms are (like if you walk into a restaurant and it’s minimal distance, that still may be difficult, if they have to walk across the length of a giant building and down some stairs to get to the bathroom – and back!)

– Tea at Lovejoy’s is nice but I also think just going to your own neighborhood cafe or lunch spot if it’s close enough, is great.

– Wheelchairs you rent or borrow in a museum can be great, but make sure your relative is actually willing to sit in one! Will they have fun or will they feel helpless, self conscious, and have to confront all their fears and ableism? Is this the time for processing that?

Other ideas, for not going out:

Ask what shows they like and watch some of that with them.

Do some tech support for them on their phone or device. Like ask what they use it for and what are things that bug them. Fix that shit ! You can do it!

Look at photo albums and talk about the times they show and what you all were doing

Ask for help mending or fixing small stuff

Cook something together that they like to cook

Why does this bug me so much?

I think it bugs me so much because of the entire adult lifetime I have of people assuming I can do things, and them being optimistic, and my own ambitions and pride and enthusiasm on top, getting me into bad situations. “Oh yeah it’s really close” …. only to find that it absolutely isn’t.

As I get older as a wheelchair user and sometimes-short-distance-walker, I’m not even that old, but I certainly have a closer view, I now have more insight about how to slow down and enjoy things in a different way.

So, anyway, I jump into those threads, point out some of the too-ambitious things people have suggested, and mention some easier options.