Liz Jackson, Alex Hagaard, and Rua Williams shared an article this week about the history and use of the hashtag and term #DisabilityDongle. Disability Dongles are technologies/”solutions” created for disabled people by possibly-clueless non-disabled people who mean well. Their description is better than mine here. 😀
I am currently teaching STS 3284 during Fall 2021, and my department will have a Wintermester session taught by Dr. Joshua Earle and a Spring 2022 session taught by Damien Williams. We’re so excited that the demand for this class warrant these additions to the schedule.
WE also are welcoming three new undergrad researchers this semester — Moira Hudson, Daniela Pereira, and Amanda Leckner join Hannah Jane Upson and grad students Hanna Herdegen and Damien Williams. We are nearing a share point for some of what we’ve been gathering and talking about how to display and assemble things for easy use and accessibility.
Guest Blog post by Hanna Herdegen, researcher on the Disability, Experience, and Technological Imagination Grant (NSF #1750260)
When we talk about disability and technology, we often operate from within a paradigm that places disabled people, designers, and technologies in a hierarchical arrangement. That is: disabled people as tragic victims of their circumstances, technologies as their saviors, and designers as facilitators of this salvation.
We must break out of this paradigm for several reasons. Imagining disability as tragic and disabled people as victims validates ways of thinking that reinforce inequitable social systems and act to deprive disabled people of agency and choice. These ways of thinking have consequences for disabled people that range in severity from everyday grievance to systemic extermination.
When designers, in particular, cannot imagine disability outside of the constraints of this paradigm, they tend to produce technologies that do not adequately respond to the needs of their users—because they have, in fact, very little idea what disabled life really looks like. This is not necessarily an individual designer’s fault; like all of us, they live in a world where authentic, diverse, and self-directed stories about disabled lives and ways of living remain, for the most part, untold and undervalued. The problem persists and becomes pernicious, however, when designers, because they believe themselves to be in a position of saving disabled people from their tragic circumstances, do not listen to the disabled users who are ready and willing to tell them how they might improve their designs—or, in some cases, that it would be best if they simply took their projects and ambitions elsewhere.
Disabled people are not passive recipients of technology. They are an active and diverse user group who face particular restrictions on their technology use—not because they are disabled, but because of designers’ failure to accurately imagine their lives and needs. Disabled technology users often must respond creatively to imperfect and ill-fitting devices while at the same time resisting ableist narratives about disabled technology use circulated by both designers and the general public.
[Stella Young video: https://www.youtube.com/watch?v=8K9Gg164Bsw]
What might a more accurate picture of disabled technology use look like?
We need to acknowledge the ways in which disabled people accept, adapt, and alter the technologies they use. We need to understand how these responses are dynamic; they change by circumstance and context. We also need to account for the role of the intent and expertise of disabled users in the dynamic transformation of the form and function of their technologies.
Rayvon Fouché talks about ‘vernacular’ technology use by Black technology users, who, through intention and circumstance—i.e. through the creative use of technologies at a particular intersection of race, culture, and political moment—transform the meaning and affect of their technologies (1).
Similarly, I would argue that we might talk about the technologies disabled people use as falling into three broad categories based on their intended use: general-purpose technology, adaptive technology, and cripped technology. We can also talk about disabled people using these technologies in three use-instances based on their expected use-context: dominant use, alternative use, or transformative use. Technologies and uses can exist in multiple categories simultaneously.
By looking at these uses and use-contexts, we can see how disabled technology use is creative, resistive, and transformative. We can also see how designers might better serve disabled user groups by engaging more closely with the particular needs and actual experiences of disabled people.
A general-purpose technology is a technology that is not intended to mitigate a disability. An example of this kind of technology might be a sweater. We can imagine three use-instances involving a sweater to see how a disabled person might adapt this technology to their varying needs.
Instance One: A disabled person uses a sweater to keep warm on a cold day.
This instance is an example of a dominant use of a general-purpose technology. In other words, the disabled person is using the sweater exactly how it is expected to be used.
Instance Two: A disabled person carries a sweater in their bag during a day out in case they get a migraine and experience a drop in body temperature.
This instance is an example of an alternative use of a general-purpose technology.
The disabled person in this instance is still using the technology for its intended purpose (to keep warm) but the use context has changed: the technology has been adapted by the disabled person to help mitigate their disability.
Instance Three: A disabled person uses a sweatshirt to prop up their foot after an ankle dislocation.
This instance is an example of a transformative use of a general-purpose technology. The use-context has changed and the technology is not being used for its intended purpose: it has been transformed by the disabled person to mitigate their disability.
In this video, Summer uses a camera bag as a chronic illness supply bag. This would be an example of an alternative use of a general purpose technology.
Adaptive technology is technology that is intended to mitigate a disability. An example of adaptive technology might be an extended-reach claw. Once again, let’s imagine three use-instances:
Instance One: A disabled person uses an extended-reach claw to grab a bag of pretzels that is out of their reach.
This instance is an example of a dominant use of an adaptive technology. The disabled person is using the claw exactly as it was intended to be used.
Instance Two: A disabled person uses an extended-reach claw to pull their sister’s hair.
This instance is an example of an alternative use of an adaptive technology. The technology is being used for its intended purpose (to reach something), but the use context is unexpected.
Instance Three: A disabled person uses an extended-reach claw as a bat to play balloon volleyball in their kitchen.
This instance is an example of a transformative use of an adaptive technology. The use-context is unexpected (the person is not completing a task, but playing a game) and the technology is not being used for its intended purpose.
A cripped technology is a technology that has been designed, redesigned, or repurposed by a disabled person to mitigate a disability.
These technologies are nearly all examples of transformative use. We might talk about the sweatshirt-as-ankle-prop, or the extended-reach-claw-as-balloon-bat as examples of cripped technology, though these uses are temporary. There are other examples which are more permanent, like sawing off the legs of a bed to make the frame an appropriate height for crawling into.
Jordan’s glitter arm is an example of a cripped technology.
Disabled people are creative, adaptive, and transformative users of technology. They are not simply recipients, not people trapped in or by their technologies, not grateful objects of technological philanthropy. Disabled people have power and agency in their technology use—and when they are denied it, they work hard to resist, redesign, and sometimes destroy the technologies involved in that denial.
Fouché, Rayvon. 2006. “Say it Loud, I’m Black and I’m Proud: African Americans, American Artifactual Culture, and Black Vernacular Technological Creativity.” American Quarterly 58: 639-661.
Hamraie, Aimi and Kelly Fritsch. 2019. “Crip Technoscience Manifesto.” Catalyst 50(1):1-34.
A colleague asked the readings I’d recommend for newly disabled people or those who are just coming into understanding themselves as disabled people.
Here’s my quick list for that. My goal, if a newly disabled person is asking me about what I suggest they read, is to show them that there’s a community and a political life to being disabled – and that we have shared experiences and community to turn to.
I get asked a lot around physical and cancer-related disabilities, so this list does have a certain push in that doesn’t address neurodivergence very well (and would have different things to suggest there – and send them toward groups like ASAN and friends from those communities).
So, here’s my list:
I’d supplement this with others more specific to the person, and, if asked for a book recommendation, I suggest Harriett McBryde Johnson’s Too Late to Die Young memoir. That was the memoir first suggested to me as I became disabled by a disability mentor of mine (who is younger than me because crip elders don’t always line up with chronological age).
There are also a list of blogs I recommend (on this site on a different tab), but primary among these are Imani Barbarin’s Crutches & Spice and Bill Peace’s Bad Cripple. And I urge them to get on Twitter and follow Alice Wong and the Disability Visibility Project, if social media is their jam.
Also, not everyone wants to get readings upon becoming disabled, and that’s okay too!
In the midst of a pandemic, I’m committed to serving my students and colleagues best – in their health and lives and community – by teaching online for Fall 2020. I’m encouraging other instructors to do the same, when their universities allow (and to protest with them when their universities do not).
There are lots of reasons universities should, as much as possible, be online in the Fall. I understand that people can’t teach equine surgery, for instance, without a little live, in-person horse action. But, for those of us who teach in the humanities, we have the opportunity to enact and model an ethics of care in the classroom by not being inside a literal classroom space, by maintaining social distancing and masking up for the safety of others, by listening to our students and respecting that they have lives outside of our virtual classroom, and by working to make content accessible and open as we continue our work.
The humanities have never been more important to conversations about technologies than they are now. Questions of access, equity, oppressive narratives, bias in technologies, racism, paternalism, and institutionalization are all bubbling up right now in contemporary news for good reason. While we will be online as a class, we have an opportunity for engaged citizenship, context-driven understanding, and a reckoning with things that have long gone untaught and unspoken.
I welcome this incoming class to become dis-oriented. How we have usually been oriented when it comes to disability places value upon nondisabled practitioners as experts about disability, undercuts authentic disability community takes (discrediting those who speak up against things), and sees nondisabled people as “helpers.” The cultural narratives here suggest that being disabled, especially in the absence of kinder, wiser nondisabled people and their technological interventions is shameful, pitiable, freakish, and wrong.
We need to be dis-oriented from narratives that paint disabled life as inferior. We need to shaken up by stories that disabled people themselves tell about technology (assistive tech and devices), infrastructure (both physical as well as legal), medical systems, and institutions (group homes, nursing homes, prisons). We also need the stories that don’t get shared or celebrated as widely — about disability community resistance, celebration and pride, DIY hacks and crip cultures, history and interdependence.
That’s what this class is up to.
I’ll post materials on this website – adding tabs for this semester soon. I also keep a public Technology & Disability facebook page where I share news stories that pass through my feed about technology and disability. I’m also shouty on Twitter, @ashleyshoo. For me, this class is one component of a larger project and body of scholarship (NSF Grant #1750260), and I’m thinking about technology and disability every day.
I welcome your engagement to the topic too – whether you take the class or not, whether you took it in the past or might in the future, or whether you are just a community member with an interest who wants to check out the topic.
For people taking the class, starting in August, I’ll have the Canvas Learning Management System set up with links and materials and assignment portals too.
In the meantime, I’m lucky to have two recent publications flowing out of some of the materials we’ll have in class —
I’m teaching a course related to tech & dis (but is not tech & dis) for Spring 2020: —
STS 4304/STS 5424
A unique course offered only in Spring 2020!
Bodies as Science and Spectacle
Take a deep dive into the ways human bodies
are problematized and viewed in medical literature,
featured in historical freakshows and contemporary entertainment, and made “other” in popular narratives about disability.
Queries, contact Dr. Ashley Shew
Email me if you’d like the course flyer.
A student emailed for greater detail, here is some: In the Bodies as Spectacle and Science class, we’ll look at how bodies are featured in spectacles and science in a couple of different domains (still deciding on some of those), but we’ll be taking a deeper dive on —
- disabled sports bodies in the paralympics and sporting contests,
- freakshows and the display of disabled bodies for public entertainment,
- critical work on racialized bodies and violence in the spectacle of lynchings (which were public events where people bought postcards and were part of a terror campaign that drove the great migration),
- the work of at-the-time progressive science in creating eugenical categories to sort out undesirable people,
- and the ways in which bodies are displayed in medical literature.
The materials are not yet firmly set, but we will likely read: Staring by Rosemarie Garland-Thomson, Freakshow USA by Rachel Adams, Patient by Bettina Judd, as well as excerpts from The Object Stares Back by James Elkins and Medical Apartheid by Harriet Washington. We’ll be watching the 1932 film Freaks, and probably at least one documentary (there are too many wonderful ones on these topics for me to have it narrowed down yet, but thinking about using the film Reel Indian about how Native American bodies and narratives have been taken up on film). In all these materials, we’re interested in how bodies have been taken up, co-opted, narratives told and rewritten, distorted, and seen.
This semester, Spring 2020, also coincides with an open and public forum event called Choices and Challenges: Technology and Disability: Counternarratives that will bring in a number of scholars on topics in technology, display, public perception, and authentic experience of disability. This will take place on Friday, March 27th, and class members will be able to develop the questions for panelists as part of this event.
“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: