Books and Stardrops

Well, I read Metal from Heaven and am about to start Can’t Spell Treason without Tea. And I’ve played the new Stardew Valley update on my Switch for the last two days, so much that I’m well into Summer Year 1.

Last night had dinner in Annalee and Jesse’s garden with a bunch of really lovely people. Loudly shrieked with people about Metal from Heaven (psychically damaged hallucinating fantasy motorcycle bandit lesbian train robber revolutionaries! unions! strikes! with a side of  decadent aristocrat prep school girl graduates!).  Other fun messing about with Meshtastic with Jesse and Emma H. and then Jesse told us about AREDN. I still need to go get my ham license!!   Megan told me about being a Master Birder and then Rick and I just kind of gloriously explained to each other all the facts we know about different kinds of rocks, which is like one of my favorite kinds of conversations, and then about family history things.

Today I had lunch with my parents and later had a video chat with yatima, who has covid and has to isolate – I will bring her soup tomorrow, having just made chicken posole after going to the newly opened (today!) El Chavo supermarket, which is great & I highly recommend it.  I went to Stamper and ordered new glasses, the cheapest possible progressives, because I sat on my wonderful glasses that I love. (I did find the same frames used and ordered them from Canada, fingers crossed that works.) Lunch was at the old St. Jorge cafe, which has re-opened with new owners as Tea Rex, and I can report they have a very good quinoa-beet-apple-balsamic salad and excellent coffee. That is it. I am giving myself some space and down time to feel a wide range of things.

Last weekend I had a great time with new friend Tiffany as we wandered around Valencia, had ice cream, dumplings, shopped around in Silver Sprocket, exchanged stickers, and showed each other our tattoos.  Danny is still reading me chapters out loud from book 2 of Dance to the Music of Time, from Bangkok, when our schedules overlap.

Everyone is just so shell shocked.

I try to keep my historical perspective and I do know that I am lucky to be alive in a time where I have any rights at all to anything, and I never expected even so to see queer/trans rights and all the legal changes there and the shift in acceptance that we have seen. We hoped that was a done deal – with a little backlash – But no. We then saw our rights to our bodies taken away and people die from pregnancies, miscarriages, infections, women driven into poverty or in the control of abusers.  The dynamic here I think is less backlash and more the economic precarity that goes with climate change and rampaging billionaires or whatever, that leads so many people into hate, fear, right down the path to fascism. We are not unique in the world, and other countries are struggling with the same stuff. What to do? I don’t know, probably same as ever but twice as hard and with more determination. I did not get to blow my ridiculous celebratory bugle that i blew in 2020 but I will blow it again soon enough.

I recommend reading (and subscribing to) Erin in the Morning – I found her post This was always going to be a generational fight for transgender people to be heartening today.

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!

Funding for Disability Justice & Tech!

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

Disability Technology Foundation plans

I gave a short talk at the Aaron Swartz Day Hackathon about my new project, Disability Technology Foundation. Its goal is to open license assistive tech of all kinds; to archive and share plans on how to build your own helpful devices, from pen holders to powerchairs. We’ll be aiming to provide an easy pathway for inventors, especially disabled inventors, to freely share the tools they have created with the world. Then, others can try out these devices, share bug reports and troubleshooting or repair tips, and adapt and improve the original designs.

Here’s the talk description:

Disabled people are often locked into using proprietary hardware and software that’s ridiculously expensive, over-regulated, and difficult to maintain or modify.

E-bikes and scooters have great ecosystems for production and maintenance. Yet power wheelchairs, though they use many of the same components as e-bikes or scooters, are locked into a world where they’re unhackable, unfixable, and unrepairable by their owners.

Disabled people do hack their wheelchairs and other assistive technology, including software, hardware for mobility, screen readers, voice banking, AAC, and gadgets to help with limited dex. Meanwhile, engineering students, disability studies folks, and other academics, regularly invent useful stuff. The problem is, most of this stuff does not make it out into the world for practical use.

The time is right for disability justice to combine with F/LOSS! We can build an open ecosystem for assistive tech!

DTF, or Disability Technology Foundation, is Liz’s new venture. DTF will serve as a pathway for assistive technology inventors, hackers, wheelchair modders, etc. to open license their work. That way, they can share it with the world, so that other disabled people can have free access to DIY and low cost plans to build equipment — and make it work for them.

Awesome Foundation Disability, 69th winner

The 69th winner of the Awesome Foundation Disability grant is Jessica Elaine Blinkhorn with the project SPANKBOX!

NICE!!

SPANKBOX is a photographic installation that depicts individuals with physical disabilities in hypersexualized poses and situations. SPANKBOX puts the power back in the hands of those with physical disabilities by granting the audience permission to look, fantasize, and question disability and sexuality in a safe environment. It also allows people to see themselves for who they really are by answering the questions presented by those whose images hang in the SPANKBOX gallery.

And the part I really love is, after the question period of the exhibit:

During the performance portion of the installation, audience members will have their words read back to them to assist the viewer with realizing their internalized prejudices and exclusionary practices.

Both celebratory and confrontational! I’m so curious how this will go! And I hope the travelling exhibition will make its way to San Francisco! They have a further fundraiser going to help with future touring.

Hard to believe it’s been five years of Awesome Foundation Disability. I have learned a lot from reading the grant proposals every month. I hope that these microgrants with a low barrier to entry help change the lives and give all these creators, inventors, teachers, artists, and others a real boost!

Disability Inclusion and Technology

This year I have been working with the Disability Inclusion Fund to develop a program for DIFxTech. This is a grant and fellowship program meant to support people and organizations who work at the intersection of disability justice and technology.

The request for proposals will be open until October 17th! Here’s some useful links:

* The Request for Proposals (RFP) and an FAQ (Frequently Asked Questions)

* In plain language translation, the same RFP and plain language FAQ.

* The application form in Salesforce or that same application form in JotForm. JotForm may be better for screen reader users.

I want to talk a little bit about why this project is dear to my heart. I’ve worked in tech for many years and I’m (most of the time) visibly disabled as a wheelchair user. I’m often the only physically disabled person in my workplace. I’ve also been involved with local hacker and makerspaces. Computers and the internet have helped me immensely as a disabled person. For example, both in preventing social isolation and in enabling me to work even when I’ve been stuck in bed or in my house. Yet I see so many ways that technology could be a tool for liberation, for movement building, organizing, and connection, and that in what we choose to build, and how we build it, how it is available to people, and what they understand they can us it *for*. I want Nothing About Us Without Us to also mean, the creation of new technologies and our visions of ourselves as disabled people in the creation of the future!

Onward, to the stuff about grants!

What does DIFxTech mean?

As I go around talking with people about the grants, they’re asking me questions like: What does “intersection of disability and tech” mean? Is it like making websites accessible?

Well, yes and no. It can be about taking existing tech and making it accessible for a wider range of people with disabilities. That hits the “disability” and the “tech” parts of DIF, but not the “inclusion!” So, crucially, think of how we design and create technology, and who makes the decisions about that, as well as how we integrate tech into disabled people’s lives. We are looking for work where disabled people are in leadership or equal partnership – that’s the Inclusion part of this equation!

What we are aiming for here is movement building, which is complex to convey. We want to put more disability justice and disability rights into “tech”! That can mean a lot of things. And, we want deeper integration of technology, tech tools, and engineering of all kinds, into communities and movements of disabled people!

Some examples for DIFxTech

To that end, in the RFP, we made a big list of examples of work we’d love to see. The list is grouped into three big categories:

1. We want projects that understand how technology can support disability rights and disability justice. Including,

For example, looking at how algorithmic bias may affect disabled people and what we can do to fix that; policy and legal work to support disability justice in tech; disability justice and technological organizations or companies learning from each other.

2. We want to support projects that make tech development more equal — to democratize tech development, provide collective and equitable access to digital infrastructure, and mobilize cross-disability solidarity in the tech sector.

Some examples: Make accessibile toolchains for disabled engineers, creating technical documentation that’s accessible in multiple formats including plain language translation, improve access to the tools and infrastructure that disabled communities need to bridge the digital divide.

3. Your project could also be about making sure people with underrepresented disabilities can do work with technology.

For example, reframing tech education as it is integrated into disability justice organizations; hosting workshops, hackathons, and conferences where marginalized disabled peoples’ experiences as technologists are amplified and elevated; education for a broad tech sector audience, on disability justice and anti-ableist approaches at the intersection of tech and disability.

Grantees will receive support for 3 years, giving them a longer than usual on-ramp to help their projects get a solid start. We will also aim to connect the grantees with each other, with the larger DIF cohort, and with other organizations and partner opportunities; generally, to give good support beyond the funding itself.

If you have any questions about applying for a DIFxTech grant, please reach out to us at difxtech@borealisphilanthropy.org.

a jumble of wheelchairs and wheelchair parts in a workshop

Justice for George Floyd rally, San Francisco

Home again after being at today’s rally at City Hall. I went out in support of the protests across the US right now calling for justice in the brazen police murder of George Floyd but also so many other police murders. If you are looking for information or a way to support have a look at the Black Disability Collective, donate to the Minnesota Freedom Fund or one of the orgs they recommend. One more quick note please be aware a huge number of police murders are of disabled people and specifically of black and indigenous disabled people of color. Read up on it!!!!! Essential part of understanding disability justice!!!!

On to my report on the rally and march.

BART and bus were not crowded. I wore a cloth mask over my n95. Hit the Civic Center farmers market, got flowers and some cherries, and then was hanging on the lawn, people on the grass reading or also eating their farmers market cherries. As the rally started, I blocked the street on one side of City Hall with a few others (I’m a very effective traffic stopper). A large amount of police transport vans and white prison buses were gathered along the other end of City Hall, and I spotted a lot of cops as lookouts on top of the buildings surrounding us.There were speeches from the steps fo City Hall and then some chanting. Then I sat with this guy Hollywood as an enormous line of hundreds of cops quick-marked in lockstep across the center of the park, half splitting off to the other side and half coming to our side, where they assumed another formation half looking outward and half looking inward to the rally. They were in light vest armor with huge batons.

political march in downtown sf

This group took off marching down Market Street around 3:30pm, with maybe 50 cops in front and 50-100 in back. I ran into Yoz and Mikki and marched with them a while. I went from there to Embarcadero, slowly, then back along Market where I fell in with TWO different giant multi-thousand person marches. It was a lovely afternoon and there was great goodwill through the crowds, people handing out water bottles, the chants not being pointless, had some good conversations every time I paused to hang out with another wheelchair user. People’s signs were also really sweet and touching. There is just a lot of good fellow feeling as well as shared pain, anger, fear, determination.

marchers on market street

As I went back looking for an open BART station, Market Street was starting to be lined with cops in full riot gear. I would pause every half block or so if there was a group of them together and try to talk to them. Man what are you doing. You’re guarding this Old Navy rather than helping people in a difficult time. You don’t have to be a cop. You could get another job, you could do something better with your life, it is not too late. You’re young, you’re healthy! You can do anything with your life! You don’t have to do this, even right now. You could quit. You could join us and try to build a better world.

Well, it made me feel better, and no one beat me up for it, so. I actually felt anguish for them as they stood their in their storm trooper armor. They will beat someone tonight, they will throw tear gas or shoot rubber bullets, they’ll put out someone’s eye, either just because they’re amped up, because they think they have to defend a fucking MALL SHOP, or because they are full of hate and violence, to show off for each other how tough they are, and it will do damage to their own selves in the process, as well as to living people and to the fabric of our society. I felt a sort of motherly pain for them. I’m sorry that sounds cheesy but it’s true I felt like an old crone looking at fresh-faced evil not unable to be redeemed.

Many people took pictures of me from the sidewalk as I marched, as they were doing video or snapshots of the crowd I could see them start at the sight of me (I’m really something!!) and zero in and then just follow me trying to get the right shot of the wheelchair lady. I don’t mind, I’m representing.

Then home via BART. Take note if you are downtown that Powell and Civic Center BART are now closed, and I heard but didn’t verify that Embarcadero was closed. I am worried about the amount of people who may get trapped in downtown with riot cops ready to mix it up. It is going to be scary tonight.

Despite everyone telling me to stay safe I felt it was important for my own conscience to go out into the street and put my body and health on the line for black, indigenous, and other people of color, for their safety and freedom and health. We need to defend our communities. None of us are safe if we are not all safe.

The last few days I’ve been just donating to bail funds but that has a horrible feel of “Like Uber, but for activism” in that I stay home because it’s “not safe” for me, (risk factors of the rona, or from some fear of being disabled in a riot, and definitely the fear of being shackled ot a hospital bed which seems to be what happens to wheelchair users who are arrested) when it’s actually not safe for anyone and the whole idea I get to opt in to be “safe” while tweeting revolutionary thoughts like a vanguardist while others risk their lives and they I pay them, is too gross for me to deal with. At least get my ass out there for one day. I’m not even missing work. Over and out!

liz with protest sign

An overwhelming time

Reaching out to people for help today as Danny is in the hospital again but coming home tomorrow and I just had more to do than I could handle. Thursday I was scared enough to kind of lose my cool (I took most of the day off work, lack of sleep, and just like, upset) but Friday & today he is much improved. Tomorrow they assess him again to see if he can come home!

I also got the cheap but new wheelchair delivered for Bob who lives a few blocks away and brought it to him since his old one was falling apart and he also got hit by a car and the front casters were bent and it lost an entire (hard) tire so he was wheeling on the rims on that side. Needless to say like that he could not get far so was only managing to get to bathroom and food like once a day (though people often bring him food it’s not predictable).

So I balanced it in front of me pushing it with one foot and one hand while driving my powerchair, but Bob wasn’t there, maybe had gone across the street. I shoved the chair a block and a half away to Naomi’s house figuring I could leave it with her and check back later. We had a lovely chat with her standing on her stoop and me on the sidewalk. I miss people’s in person faces and voices and all their embodiments. We chatted so long that I figured I’d check before heading home. And Bob was there, so I went back to Naomi’s, got the chair, passed it to Bob, and we had a further chat about the messed up situation and times. He is a veteran (I have not asked of what service) and was also a CNA for 20 years. He told me about getting MRSA in his injured knee and being in long term hospital and having six surgeries on it and then being sort of yeeted out onto the sidewalk unable to walk. He is nice to talk with and loves to read history and thrillers. I took the broken wheelchair (which the nuns from St James gave him a while back, amazingly, having painted it over with white latex house paint?!) and put it across the street by the Pizza Hut figuring someone will either pick it up for metal or the city services will get it.

On the way back from that I saw, at the bus stop 1 block from my house, a guy passed out with his legs in the street and a bus bearing down hard. I was trying to get there fast enough and nearly was but was basically waving my hands wildly and pointing. The bus driver saw. He was so nice & got all his passengers to get off, and stayed there blocking the spot so that no one would pull in and run over the dude. I had imprudently gone out without my phone but stopped some nice young punks to stay with us and call 911 since the passed out guy wasn’t responsive at all and none of us wanted to pull him back onto the sidewalk tho, one guy going by on a bike did offer… Two firetrucks and a paramedic unit came out and got him up. So, OK. I am still a little bit rattled and it is just so sad and scary.

Back to my safe and cosy and clean home. I asked for help and got it today, I am going to cook a little tomorrow for Danny as he has limited things he can eat and restaurant food tends to make him sick, but, I asked my sister and brother in law to make him some pressure cooker bone broth and our friend Jamey is making some kind of chicken stew, so I hope that will keep him going and give more variety since I can’t possibly cook every day while working and doing other stuff.

Meanwhile I played more Animal Crossing, and I worked on a translation of Carmen’s poem about Covid-19.

Hunkering down

As we go deeper into social distancing, I have some thoughts to share.

Danny and I both tend to read the whole internets (usually while we should be sleeping) and keep our finger on the pulse of things so it is interesting to compare notes with him about the rapidly changing situation and responses and theories and all that.

It’s been touching to see people “reaching out” to me as a possibly vulnerable person. Often folks who I have known online a while and who are worrying about me b/c I am disabled. Thanks friends. (I am fine and have a lot of social support and also sufficient money.) I also got a pneumovax shot yesterday to potentially decrease a bit of risk of getting extra lung infections on top of COVID-19. Danny started working from home (partly to protect me which I appreciated more than I realized I would once he said it).

I had some plans to go circulate letters to neighbors offering mutual aid but I find that I’m just a bit exhausted emotionally. I might do it next week. Instead, right now, I am donating cash to the Disability Culture Club (Venmo to @DJCultureClub) and am hosting a Stardew Valley group game for kids/teenagers/anyone stressed (with the Unlimited Players mod). Hosting a small online space and making it hospitable and building out a game Discord channel is something I can do, and all the kids are out of school for weeks if not months, so why not. Gaming is now my activism, lol?

Here’s more about the DJCC:

Are you a disabled person or elder in the [SF/Oakland] East Bay needing extra support during COVID19, maybe because you can’t risk exposure on public transit, your attendant called out, etc? Please share your needs with us at https://tinyurl.com/DJCCsupportform so we can try to assist. Please know we are prioritizing BIPOC, will be triaging needs, and can’t make promises (grocery stores are sold out of a lot and we are disabled volunteers of color doing mutual aid, not the Red Cross!)

If you are an ally wanting to offer support, the best way is to Venmo us at @DJCultureClub to pay for hand sanitizer, masks, gas, caregiver pay, protective gear, groceries, and to fund ongoing mutual aid projects like this. We also very much need local abled volunteers who are not in contact with those at risk to provide support. Please complete our ally form here: https://tinyurl.com/DJCCally

The job hunt continues, and all the places that interviewed me and then said “we’d love to hire you but we can’t accommodate remote work” then went the very next freaking week (or two) into their entire company going remote. I should go back to them and say they should reconsider since I’m an expert in doing tech work from home — as I’ve done it successfully for two decades.

A lot of disabled people are having that sort of feeling of half resentment, half hope (or some other proportion, maybe it’s more 90/10 or 99/1!) at society’s ability to suddenly bend and adapt and change its structures NOW, for everyone, when they wouldn’t a week ago, for us. Or, are expressing some level of eye rolling as people go stir crazy after 2 days staying at home. Hi, welcome to a lot of our realities (me and other people who have had long periods “home-bound”). Oh, it feels so sad that you can’t go to that event you had tickets for and were looking forward to for months? Yeah I know. (Also skimming over the obvious horribleness of people hoarding stuff that for some disabled/ill people are necessary daily survival supplies, like alcohol wipes, etc but let’s move on for now…)

I can’t stay in that feeling for long, and what you should try to do to move out of it and let go of the bitter or resentful feelings, is realize we have many coping skills to share. Just like you, an experienced disabled or chronically ill person, would do to mentor a newbie, (Like we do all the time!) here is where your experience comes into play, and your having gone deep into these feelings and emerged again, becomes somewhere that you shine. That can sound too much like “we exist to teach the abled a lesson” but that isn’t it — because they’re not going to necessarily stay in able-landia, the world is changing for at least the medium term, and millions of people recovering from severe pneumonia isn’t going to result in millions of able healthy not-chronically ill people. They will need us, for solidarity and to know how to live well and we will need their mass political support even if it is new and based on their own new needs. (I’m thinking free universal health care here.)

That said, hi, I’m actually a bit scared, knowing we’re all going to get this sooner or later, and having had a lot of respiratory illnesses, I’m scared of having a worse one, because it’s scary and hurts and you feel super anxious not breathing well, and it would be a heinous way to die and I don’t want to die. However, if I do, not to be morbid, at least I have the comfort that I have had a really great life.

Jouissance and a sense of agency

Morning reading: Introduction to Hacking Diversity: The Politics of Inclusion in Open Technology Cultures by Christina Dunbar-Hester. This is going to be fun since everyone I know is quoted in it (often pseudonymously) But no quotes from me (I think) as during the interview phase I was having some sort of major health flare-up. And if there’s ever a book where I should be obscurely in the footnotes somewhere it’s this one!

Though “diversity in tech” discourse is emanating from many quarters in our current historical moment, it is important that the mandate of open-technology cultures is not identical to that of industry and higher education. Here, the reasons for engagement with technology nominally include experiencing jouissance and a sense of agency. This is experienced through, yet not reducible to, community members’ engagement with technology. If we tease apart the emancipatory politics from the technical engagement, we find that the calls for inclusion and for reframing power relations are not only about technical domains; rather, they are about agency, equity, and self-determination at individual and collective levels.

At that “jouissance” sentence I felt my heart sing and I felt so seen. Yes! This bodes well for the entire book’s understanding of our feelings and our context. So many histories leave out crucial things like love and fun and joy. Why have I fucked around with computers my whole life? Because love and happiness is why. They’re exciting, the Internet is still like a dream to me, the access to information and the possibilities of unfiltered/unmediated publishing or production, and consumption, still holds so much hope. Because I (we) like it that’s why. Like Mole seeing the Water Rat’s boat for the first time,

The Rat said nothing, but stooped and unfastened a rope and hauled on it; then lightly stepped into a little boat which the Mole had not observed. It was painted blue outside and white within, and was just the size for two animals; and the Mole’s whole heart went out to it at once, even though he did not yet fully understand its uses.

We still don’t, of course.

Also good, everything in this chapter about collectivity. *heart eyes emoji*