Thoughts on disability representation and images

I was thinking this morning about the problems of making images that somehow represent concepts of “disability” in general, activism around disability justice and solidarity, or just wheelchair stuff.

You may recognize the problem. It is a challenge to find cool disability related stuff. If you want 9000 boring variations on the blue disability parking / bathroom symbol, great. But we need to go way beyond that!

In addition to running a nonprofit (Grassroots Open Assistive Tech) and creating logos and cover images for my small press zines, I love stickers and posters and all that stuff. In my backpack and in the side pocket of my powerchair, I carry a little pouch of stickers to give away to people. Some are for my own projects, some are random, some tech related, some fun cartoons or animals for kids. And I like to have cool queer, trans, and disability related stickers to share too!

To that end I regularly go trawling through Etsy doing keyword searches like “wheelchair + punk” and see what pops up. “Cripplepunk” is remarkably fruitful! I especially love the dynamic, queer coded pastel knuckle tattoo-ed manual chair “crip punk” sticker from ChaosCripples, and really want that on a tshirt or an iron on patch!

head on, fists forward, art on a sticker, of a wheelchair user with knuckle tattoos spelling crip punk

This one is nice too! “Mobility Aids Are Freedom” from SnailTrailStickers!

art on a sticker of a rollator, wheelchair, crutch and cane, that says Mobility Aids Are Freedom

If you go do some image searches for “wheelchair user” most of what you find will be kind of boring. “wheelchair user punk” used to bring up ALMOST NOTHING but lately, has been kind of good! Some kind of cultural shift (and maybe a technical shift as well) happened for that to be the case.

It’s not like we haven’t been around! Witness this pic of me from around 1993 taken by my sister! There was a version of this pic also photoshopped by her to make it look like the wheels are on fire. Note my amazing, youthful wheelchair-given triceps! Anyway I was a punk in a wheelchair and I would have really loved to see any kind of representation at all.
photo of young liz in a cambered sporty red quickie in 1993, leather hat and gloves, also huge muscles wow

My own drawing skills are OK but have a finicky, scritchy, lynda barryeqsue aesthetic that is not always what I want in a sticker. So I had a try at AI generating images a while back and came up with the seed of the Burn This Press logo I’ve been using on the back of some tiny zines. I lost the prompt but it was something like “nonbinary genderqueer punk, doing a wheelie in a modern dynamic sports wheelchair with electric sparks flying out” (developed over many iterations of bad prompts with bad results). I got something close to the current BTP logo which I then got my sister to re-drew a bit for clean up, and then I did more edits to mess with the hair, neck, lap, leg position, and so on.

Have a look at the Etsy and other online shops where people are making this kind of cool art! Buy their stuff and support them!

I surely have blogged before to lightly mock the wheelchair users we see in murals. They are in a terrible hospital chair, pushed by someone helpful, and everyone is looking up slightly with a beatific smile for maximum Inspo. Barf me out!

(edit: I can’t find that post, maybe it’s in draft somewhere, but here’s an example from the mural by where the J and N Muni trains stop at Church and Duboce. Note the ridiculously transcendent facial expression of this lady despite that she is riding the world’s crappiest wheelchair)

(further edit, i am only mildly cranky about this and like to make fun of things and it is a pet peeve, don’t get me wrong, i also appreciate ANY sort of representation for disabled folks and wheelchair users in particular, because it’s so damn rare)

(Also also, as the CEO of Digression, adding that I can wrench my mind from irritation that the one wheely person in this giant, pretty good and weird mural, is in a crappy chair being pushed, and direct it to the actually good fact that the care worker can also use a representational shout-out? though this is a struggle because what I personally want is a wheelchair user who “looks cool”)

detail from a mural showing a wheelchair user looking oddly ecstatic

Another problem with disability activism images is trying to represent as nebulous and huge of a concept of disability in one image. Using a wheelchair as this symbol is super lame! j/k!!!
This is how you end up with somewhat awkwardly drawn cartoon people where one is in a wheelchair, someone has a white cane, there’s an older person, somehow they try to work Deafness into it, they will be several different races, someone is in a sari and someone in a headscarf, and so on. Usually they are standing awkwardly around together as if posing for a stock photo! Maybe with protest signs if you are lucky but more often they aren’t doing anything other than Representing. I love this, and it is SO HARD TO DO in a way that looks good, and has some actual solidarity and joy in it rather than coming off as totally cheeseball!

(NOTE: I HAVE POSED FOR THIS PHOTO OFTEN – on request – feel free to put me in your pic – yes, if I work at your company or speak at your event, I absolutely will be in the front row or in your web site photo about Diversity – fuck yeah (but maybe with a little eyeroll))

I think these images, while lovely and well meaning and managing to do Representation, can come off as kind of bad art, or maybe we can be less snobby and call it folk art style, but I wish for artists who can draw the anatomy of human beings more competently than I can, to have at it on stickers, murals, tshirts, posters, logos, you name it. I want some cool socialist realist art of this Representation Group! Some art nouveau dandy versions ! Be in a park! Go to a music show! Be playing dungeons and dragons! Be doing something, omg.

Really the main problem is that none of these Group Photo Representation images, no matter how nice, work super well as logos as they are complicated and you have to draw a lot of bodies and faces and a background. When they are the best (to my mind) they become much more like narratives than logos! And that is good actually! That means they are MORE TRUE.

Here’s a pretty good one I found while writing this article from a report called “Resourcing Disability Justice: Our Feminist Journey Toward Centering Disability Justice“! These disabled people are having an ecstatic experience while feministly weaving together, and also representing some kind of super punk-ass rhizomatic concept, in space, on top of a damn rainbow! You see that it is trying to solve all the problems I describe in this single image. It is OVERCLOCKED. Really quite a challenge. Actually, my deep respect to everyone who has tried to meet this challenge, and a shout out to this artist, Abi Stevens!

(Note this report title is ALSO doing the most! “Toward” implies a proper humility, in that you are not done, or objective, or definitive, you are adding your little yawp to the collective chorus over time! We aren’t even defining or creating, we are Centering it. It’s also so disability justice that it has to say it TWICE.)

group of disabled women and girls in outer space, on a rainbow, weaving something collectively and joyfully

Another option is to have something kind of abstract – but what ?! I like ADAPT’s burst chain, in this category! There are many that are just like, a shape, or some shapes together, for maximum safety and boringness and when I see those I always imagine the ten painful committee meetings that produced them via painful hashing through everything else I just described. Thus, you may imagine me for years muttering “Oh, look, a SHAPE” and snorting to myself, whenever I encounter these logos, a mutter and snort that should be taken to convey the entire contents of this blog post, but 30 years of it.

For GOAT I worked both with poking some AI generators and also paying a friend who is a graphic designer to walk through a bunch of these concepts. Rather than human figures I thought it might be nice to have cute, colorful little icons of tech things. That way we get the variety of cross disability solidarity and the idea of tech stuff. The DIY vibe that I was going for is like the whole earth catalogue, sierra club how-to, 70s-ass hand drawn illustrations you might have in a step by step DIY instruction. So, my human designer drew me a whole set of icons, and I am combining and using them in different ways. There isn’t really a canonical “logo” yet but maybe one will evolve as I play with these images! I went with a tablet or ipad looking thing for AAC, a stylized ear with hearing aid and sound waves, and so on. The gear and tools, rather than the people.

colorful hand drawn icons of a powerchair, wrench and screwdriver crossed, spool of thread and needle, robot hand shaking a human hand

I was also going to say a word about stickers and patches and posters. They are usually very hand made and “folk art” feeling, they may or may not have “good” production values ie they may look a bit shitty or like they were created by raccoons in a back alley. That is fine actually. But what we want in our punk stickers etc. is a clear message that is legible to both our in group (other punks) and maybe to a lesser degree to our out groups (especially if we are telling them to fuck off). There’s a lot more I could say about that!

And the point of having these cool ass stickers to give to people is to bring joy to them unexpectedly – there is something so nice about, another disabled person complimenting my stickers a little bit wistfully and then I pull out a whole sheaf of stickers they can pick through & take! People really light up! Of course it is always interesting to see what they will choose when offered a wide selection! Bringing this tiny bit of happiness and crip joy to random strangers is also useful activism to do in daily practice.

Whill battery hack night at General Lithium

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

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!