All Access: R.U. Sirius In Conversation With Liz Henry on Ability Tech, Contemporary Hackerspaces, and Being as Badass As Possible

Liz Henry: Yes! I think about this a lot and I love reading science fiction!

I could give some novel recs here, that I think are interesting to the cyberpunk who wants to think more about cyborg-punk .I'm interested in work that grounds cyberpunk stuff and futurism in our bodies, more about embodiment and our messy biologic and technological edges & interfaces. 
 
We can see how computers went from centrally controlled mainframes where you could get time and resources allocated to you, to the idea that we might have our own desktop or home computers, to having those computers in our pockets.  But the control and ownership of resources, storage, data, and so on has been gradually moved back away from us and re-centralized under corporate ownership. As our lives and bodies integrate more with networked devices we are feeling the pinch—stuck in some system where we can't get at our data and yet it's visible to, owned and sold by, a corporation—a different kind of "body".  Kids don't have the opportunity or motivation to build a computer, to figure it out and hack it, on the same level, so don't know the guts of their devices. Though I do  think that our motivations to freely play games, to share or create other kinds of culture, and to communicate with others remain pretty consistent.

[re: cyberpunk novels]

Brain Plague by Joan Slonczewski is one of a sequence of novels where we first see how generations of nano symbionts living in an artist's brain reshape her art and her society on the decadent capitalist planet from feminist science fiction classic, A Door Into Ocean; the nanites are short lived but can communicate with her and with the symbionts that eventually colonize other people)  If you bounce off Brain Plague a bit then try her more fast paced and accessible novel The Highest Frontier, about a university in orbit.

Xenogenesis by Octavia Butler  (Human refugees or captives must merge and morph with aliens who take over Earth; alien-human sex polycules; sure hope you like tentacles! )  
The Stars are Legion by Kameron Hurley is an amazing squick-fest where the planet is also a spaceship that is intelligent and alive and inhabited by women who are part of its gooey, leshy bio-industrial ecosystem. Come for the matriarchy, leave never forgetting the scene where the protagonist squats and gives birth rather messily to some sort of gear that the spaceship needs. That's how they roll! Hurley's other books are also all very interesting on the bio punk front as I think of the machines made of bugs in God's War and its sequels.

LH: We see how car culture is shifting from a DIY, or small shop, approach where it was assumed that an individual with a car could largely fix that car, given a garage and tools and some knowledge. That's now a lot harder, as more electronics, and proprietary electronics, make cars all snazzy and modern. It may not be impossible, but we don't have the information or tools readily available.  Similarly, consider text on a page in a book, or text on a web page. You can write on it, you can change it, it's editable. We don't own it if we can't fix it, or edit it!
 
That "can't fix your car anymore" problem holds true for assistive or enhancing technology. In the US, we have pretty decent availability of electric wheelchairs including consumer-grade devices like little e-trikes and scooters or the not-actually-durable-medical-equipment certified power wheelchair that I use every day. But, most of that availability is mediated by insurance and specifically Medicare or Medicaid. If you're in poverty or precarity because of disability then you depend on that insurance for your very basic mobility and maybe even your life. If your stuff breaks there aren't always repair options locally, you are very limited in how many times you can get a replacement chair, and if you have to send your chair off for repairs it may take months or longer to get it back. Meanwhile you can't go anywhere and might be getting bedsores which, by the way, you can die from. Think about this problem with people on ventilator or trach or other breathing related equipment. It is dire and when supplies are short people literally do die or end up losing their ability to live independently, ie are forced into institutions.
 
Privacy is another big issue as we generate more and more data which is then harvested by corporate entities. At the very least, we should always get to know what that data is, and to see, access, export, it all! While I was on a support call with an engineer from my powerchair company, I found out he could track not just my exact location at any time in the chair, but how fast I was going, and my tilt and pitch in 3D space. So he was saying, “well when you went down that steep hill outside your house, you hit a place where you were going across a slanted driveway as well so your wheelchair threw an error.” I started imagining a sort of techno thriller plot line, where I was trying to be a fugitive on the run, and was super clever about it, but then they caught me because my wheelchair was phoning home without my knowledge! Even without being a super-spy on the run, I would like to have control of my own data and my privacy.
 
I can't solve all these problems with my nonprofit but I'm trying to connect many of the people who are fighting on different fronts, for education and skill sharing, for sharing information like service manuals and diagnostic tools, for right to repair laws and better policies around assistive tech in general.
 
Do I want to always have to fix my powerchair myself? No! But I want to push things in the direction of a healthy repair and maker ecosystem. That concept is so important. I think we can't be a functional society without a distributed, decentralized, low barrier to entry repair "ecosystem" for everything we build , use, and depend on. That also includes designing for openness, repair and maintainability, and interoperability.
 
The arguments against open, repairable, or otherwise DIY assistive tech usually center around safety, liability, quality control, and the regulatory environment around health insurance and government benefits. 

I'm not entirely against regulation and certification because I understand the horrible ways that the lack of it can be harmful on a huge scale. Without that, your corporations are going to experiment on humans. Well, they do that anyway, see Neuralink or whatever.  But what I'm talking about is experimenting on people where there is a big power imbalance. Safety is important but I bristle at the idea of "stay safe".  Stay free is more like it.  There is a great concept of "the dignity of risk."  
 
In some of the material my GOAT (Grassroots Open Assistive Tech) archivists are cataloguing and scanning from the 60s and 70s we come across great stuff like, how to make a table saw and all kinds of other carpentry and woodworking equipment easily usable for someone with one arm (So useful if you have already accidentally chopped off your other arm with a different table saw!) These machines were things like, a rope pulley, levers, and a foot pedal. They’re not even electronic, just clever adaptive devices that I laugh to imagine the "risk" people would consider it today. We can't let the knowledge of those low-tech devices be lost! Not just how to make them, but the very idea that they are possible and within our reach. 
Anyway, we have to really fight for the right to tinker, make, build, and fix stuff, because our freedom depends on it! So, that's what GOAT is about, on many levels at once, changing people's assumptions about who owns assistive tech, and about what we can do with our bodies and machines that we make to enhance them. 

LH: I could talk about that so much, on multiple levels. I can hit you with the Cyborg! I mean, I was thinking about science fiction, and although I’m not necessarily in the transhumanism groups… “those people”… I mean, there’s a lot of it around here. Different ones. The head-freezers or whatever.

LH: a lot of basic things that are invented for disability purposes like Oxo  products… they have the  whole line of kitchen tools that have the good grips. Those were a disability thing and then they became mainstreamed. Everybody likes them because they’re comfortable.

LH: Things like that are generally useful for many people. The word for that is ‘the curb-cut effect’: It's like curb cuts are great for wheelchairs, and they’re primarily meant for wheelchairs. But also great for skateboarders or for bikers or if you have a stroller. Or it’s helpful if you’re a delivery person with a hand-truck. And everybody appreciates it. 

LH: I do too. And again, you mentioned the techno-fascists. It quickly goes in that direction. I remember all of the different ‘exo-skeleton’ enhancements. They got pitched as a disability thing, but it can be like a form of ‘crip washing,’ Right?... Like where you have pink-washing or ‘green-washing’. So the thing is actually meant to make a super-soldier or to make your warehouse worker work harder. But they take a little section of their Department of Defense research budget and they shunt it over to the disability part. They can say, “we have a non-profit.” So they’re gonna look noble. They’re going to mask what that research is primarily for.

But the idea of leapfrogging into enhancements does excite me. It would be great if we had all kinds of enhancements, and if it was flexible. The questions are… Who is it for? What's it for?... Who controls it? And ‘Who's profiting off of it? Who's exploiting it? So the instant you make this great technology that's going to help people and enhance people, and make our lives creative and fun and give us three elbows and you wheels or whatever…

LH: Yeah, exactly, our prehensile tails. Damn, our prehensile tails! Where are they? And then you find out…   somebody wants me to have a prehensile tail so that I'm a better worker. And they want the data on it. And it's a surveillance app. So many things happen that are not the fault of the technology.

That’s how I feel about AI. I’m an AI defender in many ways because I'm kind of a techno-optimist. I’m actually a hard-core techno-optimist. It’s not that I don’t see the problems and see the horrible misuses and the ways that things get dystopian. It’s that I think we have to see the good parts, and aim ourselves firmly at the good parts, and fight for those good uses.

LH: I don't know. I'm thinking about that. But I worked for John McCarthy for a while. John McCarthy, father of AI, invented LISP, or was part of the team that created LISP. I worked for him for a couple of years just helping him organize his papers and archive for Stanford. In effect that meant I just kind of hung out with him a lot while he fell asleep in front of his computer. But we would gossip and talk, and I would read all of his old papers and letters and diaries and talk to him about them.

It was very interesting. And I really saw that, A), he and Minsky and John Nash came up with the idea of ‘artificial intelligence’ because they believed it would perfectly allocate the world's resources in a fair method. To them, it was a tool for socialism. They were red-diaper babies—at least Minsky and McCarthy were. And they passionately believed that maybe they could make something that wouldn’t be a tyrant. It would serve without being an enslaver. It would serve humanity in this way, enhance society. It would distribute food and resources according to everyone’s needs. That's what they wanted from it. And that sure didn't happen, right? But I found it very touching.