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…
The journalist Rose Eveleth (from the paper we read “The Hidden Burden of Exoskeletons for the Disabled”) published an article in WIRED that features quotes from David Meyers (one of the Gallaudet 11), Alice Wong (of the Disability Visibility Project; we’ll watch her MedEx talk in a few weeks), Mallory Kay Nelson (who talks about transmobility), me, and many others. It’s a well done piece. Here is the link to “It’s time to rethink who is best suited for space travel.”