Hanna Herdegen, the current graduate research assistant for the NSF grant associated with this site, authored this blog post on the Maintainers website. It’s themes are close at heart to the work of Technology & Disability – and very worth the read!
Goffman’s discussion of stigma helps to illustrate the consequences of being marked as disabled, but does not fully explain how and why those kinds of judgments of social qualification/disqualification are made. Here, it is useful to look at organizational studies scholarship on dirty work: the kinds of occupations whose workers are socially ‘tainted’ by their association with dirt, death, and/or bodily fluids. Like disability, dirty work is often made to be spatially and temporally absent from society. Building maintenance happens at night, or in off-peak hours; county dumps and scrapyards are tucked away in rural areas, away from population centers (2).
The fact is that there are certain bodies allowed to exist in popular stories about disability. There are set narratives, or narrative tropes, that disabled and ill bodies fit into—the inspiration, the overcomer, the sports hero, the warrior cancer child. Outside of these narratives, which act to consume rather than produce disabled lives and identities, disabled bodies disappear.
It’s not that disabled people cannot be inspiring or overcomers or warriors. It’s that, often, these are the only things they are allowed to be. It’s that there are aspects of disability/chronic illness that are painful, messy, joyful and normal that are not allowed to be normalized in the set narratives available.
There are individuals who are willing (and waiting, and needing) to tell stories about the everyday experience of disability and illness, but who cannot do so effectively because, frankly, people don’t want to hear it.
There are few symbolic spaces in which disabled bodies are allowed to exist, fully and unconditionally—and as a result, few material spaces in which existing as a disabled person does not require choices to be made between maintaining one’s body and maintaining one’s identity.
I want to add: Painting very specific and culturally informed ideas of what constitutes an ideal body as what we should seek for space travelers simply doesn’t hold when we’re talking about about space flight and space travel – since none of these places will be the environmental niche in which we’ve developed.
That’s a long way to say: what we think of as ideal on Earth won’t make any sense as ideal outside of the context of Earth.
It’s already the case that what we think of as ideal on Earth is heavily influenced by culture and sports and masculinity (see Cora Olson’s work for interesting conversations about sports, hormones, and norms), but it’s even more extremely wrongheaded to launch these misinformed/unquestioned ideals into outer space.
It’s time to throw out many of our preconceptions about what bodies fare best when we’re regarding environments radically different from what we have now.
I have a lot of worries about who will *continue to be* excluded from air travel as we talk about commercial spaceflight. It’s already terrible out there for many disabled travellers. There should be a whole post on this at another time…
Also, this view of “screening out pathologies” needs more interrogation than a blog post.
This one has “the corn story” for people that know the reference. 😀
I owe a great debt of gratitude to the NC editorial team, Dr. David Perry, and Dr. Melanie Kiechle for helping me make it flow and thinking it was publishable. And, as always, my scholar-colleagues Drs. Cora Olson and Monique Dufour help me in so many ways.
Mallory Kay Nelson asked for an audio recording, which I made and am happy to send to folks — haven’t figured out a good way of uploading on wordpress yet.
Update: I figured it out. Here’s the audio version:
I might also draw your attention to a book review of Bodyminds Reimagined by Sami Schalk, written by STS PhD Candidate Joshua Earle. (More work to come from him around the theme of CYBORG MAINTENANCE soon, will share when published.)
Also, I’d like to draw your attention to ALL the articles because wow, but it will be obnoxious if I try to. Here’s just a list, but you could also click here.
Introduction to Special Section on Crip Technoscience by (guest editors) Kelly Fritsch, Aimi Hamraie, Mara Mills, David Serlin
Crip Technoscience Manifesto by Aimi Hamraie, Kelly Fritsch
Crip Kin, Manifesting by Alison Kafer
Continuing Presence of Discarded Bodies: Occupational Harm, Necro-Activism, and Living Justice by Eunjung Kim
Cyberpunk’s Other Hackers: The Girls Who Were Plugged In by Lindsey Dolich Felt
Materializing Datafied Body Doubles: Insulin Pumps, Blood Glucose Testing, and the Production of Usable Bodies by Stephen Horrocks
Technopsyence and Afro-Surrealism’s Cripistemologies by Olivia Banner
Transmobility: Possibilities in Cyborg (Cripborg) Bodies by Mallory Kay Nelson, Ashley Shew (your fave), Bethany Stevens
Introduction to Crip Technoscience Roundtable by Aimi Hamraie
How Technology Is Forcing the Disability Rights Movement into the 21st Century by Vilissa Thompson (check out her Ramp Your Voice blog too)
Technologies for New Nightlife by Kevin Gotkin
Cultural, Aesthetic Disability Technoscience by Alice Sheppard
The Rise and Fall of the Plastic Straw: Sucking in Crip Defiance by Alice Wong
Lab Meeting: Transcription Work and the Practices of Crip Technoscience by Louise Hickman
Temporal Orders and Y Chromosome Futures: Of Mice, Monkeys, and Men by Sam Taylor-Alex, Sharyn Davies
Amazon Echo and the Aesthetics of Whiteness by Thao Phan
Fables of Response-ability: Feminist Science Studies as Didactic Literature by Martha Kenney
Look Up and Smile! Seeing through Alexa’s Algorithmic Gaze by Nassim Parvin
I will be using this articles for a long time in Tech & Dis class in future iterations!
The City had originally planned to ban other items, such as single-use plastic utensils but after concerns were raised during consultation, that was changed to opt in – meaning provided only if requested by the customer. In contrast, as a result of consultation the opt-in for plastic straws was changed to a ban in part because “staff concluded that a customer prompt or by-request by-law was not practical…”
Months earlier the City’s Park Board had voted 5-2 against banning balloons…
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:
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.
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
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.