“Disability rights are civil rights, and disabled people fought hard to secure the rights to your accommodations in the classroom. Those people who fought for your accommodations were spit on, arrested, isolated, and dismissed, but they wouldn’t take less than they deserve when it came to securing your rights to be in this classroom and at this institution. They are my heroes, and their work has also ensured that I am accommodated in our classroom as an employee of this university and as a multiply disabled person. You can bet that I really want you to use your accommodations, or help you get them if you don’t have any in place, or find a system that works for you if you don’t care to go through the official channels.”
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).Hanna Herdegen
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.Hanna Herdegen, “Maintaining Disabled Bodies and Identities: Disability as Dirty Work,” The Maintainers
There’s a second post from her in the queue over at the Maintainers, so hoping to share more soon.
I was quoted in this Space.com article about health risks for commercial spaceflight.
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.
The great editors at Nursing Clio published a recent article from me last week called “Stop Depicting Technology as Redeeming Disabled People.”https://nursingclio.org/2019/04/23/stop-depicting-technology-as-redeeming-disabled-people/
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:
Catalyst has published a special CRIP TECHNOSCIENCE issue, a must read for Tech&Dis-interested folks. I’ve been waiting for the Fritsch-Hamraie “Crip Technoscience Manifesto” to come out for over a year.
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!
On May 16, 2018, the City of Vancouver, BC voted unanimously to proceed with a ban on single-use plastic straws. They did so despite the fact they are necessary for some disabled people and that alternatives (metal, paper, bamboo…) are not suitable for different reasons for different disabled people.
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…
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Silicon Republic interviewed me about technology & disability and the work we do. They accurately quoted me: “Ableism is the sauce we’re all marinated in,” so basically my career has peaked. 😀