Disabled People in Space – Becoming Interplanetary

A note: I had the great pleasure of participating in a panel discussion as part of the Becoming Interplanetary Event at the Kluge Center of the Library of Congress I’m still buzzing from the amazing range of new ideas and cool stuff that this meant. The event consisted of 3 panels and 3 performances. The amazing Lucianne Walkowicz organized the event – an event that’s even hard to describe. Below, I’m adding some notes – marked up with links out – that I brought with me to the panel. “The Right Stuff” asked (well, Lucianne actually did the asking!) panelists Brenda Child, Brian Nord, Chanda Prescod-Weinstein, and I about who has the right stuff for becoming interplanetary, how narratives shape these ideas about space, and how the meaning of what stuff is right is evolving or being challenged. (I will link here when the captioned session hits the interwebs.)

Personal Background: I work on narratives from the disability community that challenge our usual notions about technology and body – specifically I am interested in the idea of technoableism. (I have written a bit on this topic of Logic Magazine earlier this year.)

Technoableism is the idea that our narratives about technology and disability often reinforce ableism, though they are often dressed up in the language of empowerment. We talk about fixing people and giving them (disabled people) new powers with technology – often in the absence of consulting those same folks about what they might actually want and how they think about their bodies.

Specific to thinking about The Right Stuff and participating in this panel, I’ve been thinking in 3 different veins, though I didn’t list them this way at the panel:

  1. Historical Prelude: Including disabled and Deaf people in space research has already happened – but with our bodies being seen as useful for research purpose only without considering people in our communities as candidates with “the right stuff.”
    • Read about the Gallaudet 11: Deaf men were recruited by NASA from Gallaudet University for training around motion sickness in space since some types of deafness correspond to difference in the feeling of motion sickness. Despite superior performance when it comes to not getting motion sick, these research subjects weren’t recruits for actual space travel. They were as a reference class to get findings to help hearing people go to space.
  2. Contemporary Artistic Reflection: Artistic and creative work on #CripsInSpace in the Deaf Poets Society and other disability narratives, poems, and memoir that reflect on space offer reasons to think that the adaptability, creativity, and spatial and planning prep that disabled people already engage in could provide good reason for opening space exploration to us. Here are some links related to #CripsInSpace
  3. Everyone in space will be disabled, if they are not yet already. And people might want to be disabled to be in space. Examples include:
    • Wheelchair Users & Movement in Space: CripsInSpace and Sam de Leve have pointed out how wheelchair users and other mobility device users are often use to figuring out how to navigate spaces in a more creative way that involves a lot of pushing off in ways that nondisabled people rarely experience. (As a person who loves her rollator, I can confirm that the beauty of pushing off an moving in this way is wonderful – and something you get better at doing the more time you spend on wheels.)
    • Some medical conditions being better: People with certain medical conditions might make better space travellers under particular conditions, either because they’d do better in lower gravity or because their bodies can tolerate high g’s. For instance, people with hearts closer to their brains are less likely to pass out in high g’s since blood can make it to the brain faster. People with some bone conditions might do better where their skeleton is less compressed by gravity over time. (In individual conversations with folks, it’s always surprising to me how many people have thought about how their bodies would do in space!)
    • It’s not just physical disability, though: Mental health in space: We already know that Seasonal Affective Disorder has higher incidence in places where people get less light from the sun. Imagine the high incidence of SAD we might see from people travelling away from the Earth. It might make sense to send people who have already learned how to manage their mental health here on Earth if we hope for good space travellers who have a track record of learning and adapting to various conditions already.
    • Cyborgs/Cripborgs* wanted — there are many examples of people who have medical devices and monitors installed that would make it easier to do some things in space. My fave example is from my pal Mallory Kay Nelson: people with ostomy bags will have a much easier time with the current pooping in lower gravity situation. Read about the history of pooping in space while you consider this.
    • Even if we aren’t sending disabled people out, we’ll be bringing disabled people home or sending them further out. We’ll have new disabilities in space, and people who are nondisabled here will become disabled through the environmental changes in space – gravity and radiation being the two most anticipated, but in other ways too. 

I want to add that it’s discriminatory + ridiculous to populate our ideas about space and who has “the right stuff” with only nondisabled people. The fact is that some disabled people may have an edge as space travellers — and what our bodies will need to do and become in space is far from the niche requirements set here on Earth. Even if we start out nondisabled and recruit for peak abledness, the toll of space on human bodies will bring about disabilities we have yet to imagine. Considering the future of space travel in any serious way requires thinking about being and becoming disabled, about accepting disability as a normal part of life – one that will follow us to the stars.

 

*’Cripborgs’ is a great term used by Bethany Stevens. Mallory Kay Nelson, Bethany Stevens, and I have a publication talking about that term (and others) that will come out Spring 2019 in Catalyst.

Technoableism, Cyborg Bodies, and Mars

I’ve been tweeting for the @WeAreDisabled this week, and I worked my way to talking about tech (and not just disability issues) today.

The thread where I briefly lay out my own current work is here: @ashleyshoo on @WeAreDisabled. I am copying the text below for two reasons: (1) this seems like a blog post and not a series of short tweets and (2) word is that screen readers can’t all read the new 280 character Twitter posts (only the first 140 characters). Here it goes:

Thinking about Cyborg and/or technologized bodies. Attended a tech conference last week where many people had in mind “fixes” to problems of aging and disability (even when it was not couched that way).

I got to speak, and I felt like it was in a different language – about disability pride, about how everyone will one day be disabled (if they get to live), about designing while respecting “nothing about us without us.”

I love the stuff I get to use. But there’s a real problem with glamorizing technology and/or being cyborg. Glamorizing the tech and the idea of these technologized bodies makes us ignore important issues, like maintenance and social meanings.

Keeping technologies in and on one’s body actually takes a lot of work. My fake leg breaks – and it disrupts my week or month, depending. I might end up gluing pieces of it together or trying to find the right screw combo as I sit on the floor of my local hardware joint.

Every 6-8 weeks, we flush the port-a-cath installed on my chest w saline. If it doesn’t flush: extra appts at the hospital to check it out with radiology. This device is hella useful for someone with hard-to-locate veins and ppl with strong chemos – but it takes maintenance.

If my hearing aids need work, I send them away for the week while my dealer’s company fiddles with them — usually a quick turn around, but this is disruption.

 

Cyborg bodies aren’t these shining examples of human “overcoming” and technological triumph. I use stuff because I need it – and sometimes I even like it. But ideas about cyborgs usually gloss over what it is actually like.

I’ve started to reflect on this idea and plan a book project around it — technoableism. Technoableism is a particular strand of ableism that is perhaps most prominently figured in narratives around transhumanism, but enjoys wider capital than that.

Technoableism suggests a very particular narrative about overcoming disability, how to do that and how other folks should engage in it. And, if you question it, the replies you get back doubt your experience and suggest that you actually agree.

In other words, either you are wrong/deluded about your experience or you actually agree because – gasp – you do use technology. It suggests that using devices amounts to agreeing with narratives about technology as overcoming disability.

I like my tech – sometimes I even have multiple things for the same state of my body, using crutches or a rolling-walker or a prosthetic leg…. That doesn’t mean that every tech device that attempts to solve a “problem” – as framed by someone nondisabled – should be lauded.

And technoableism completely ignores social factors. The awfulness it is to go out as a young person with a walker, for instance, is why I might not use my walker more often.

Even though walkers/rollators are hella rad.

I just want to write an ode to my third shiny blue rollator now. I take off my leg at the end of each day, and sail away with the fluid movements of my body on wheels. No more heavy, only free — as long as I stay on the wood floors. LOL.

Technoableism also discounts different devices for different situations and bodies. It imagines that there will be a solution to the problem of body – with the idea that bodies are problems. But the problems are often surfaces, environments, interfaces, places, and others.

I gave a talk a few weeks back in a colleague’s class. The colleague’s class has a theme of planning to live on Mars. He wanted me to give some history to help students imagine social justice issues in this context. I, cheekily, presented about how Mars is for disabled people.

Mars is an environment so unlike Earth that any human making the journey there would become disabled, if they are not already. Their bodies and minds would not be normatively nondisabled as people consider them now. (Yes, this does play on the medical model a bit.)

I had the students give me many examples of this from what they learned, and we had a ton of fun with it. Because they had had the assumption that disabled people couldn’t and wouldn’t be astronauts. And opening this space was huge.

Also part of this suggestion was that some disabled people may be better constituted for Mars, especially when we consider what it is to move in space. I showed them some of the Crips in Space narratives from and videos from the CFP from the group.

Technoableists can’t see the value in disabled bodyminds. Thinking about does some of that work, though.

Technoableism allows people to celebrate the glamorized image of the cyborg as a mode of freedom and resistance while also completely neglecting those with actually technologized bodies and what they say.

Technableism enables disability discrimination through this neglect. And it continues to perpetuate it in how tech is created, marketed, and understood.

(See, really very bloggish. Apologies for shortened words and abbreviations. #twitter.)