Disability Community Tech Center

The Mellon Foundation is funding a project on Just Dis Tech Futures to “support the creation of a Disability Community Technology Center that provides guidance for developing disabled-led technology and disability-forward technological futures through humanities-based scholarship and arts outreach.” This project runs Jan 2023-Dec 2025, and will mean many exciting things for the disability community surrounding Virginia Tech and the New River Valley region of Virginia, as well as in and around Charlotte with our partner university UNC-Charlotte.

Details on the Mellon Foundation Website here: https://mellon.org/grants/grants-database/grants/virginia-polytechnic-institute-and-state-university/2207-13524/

We will also have many more details forthcoming in announcement of disability justice-centered artist residencies, performances, workshops, paid tech consulting opportunities, and community events and activities. We are grateful for this funding – and the powerful impact it will have.

Advisory Board for Tech to Support Medically Complex Kids and their Families in Virginia

Sharing this research study advisory board solicitation — we are looking for disabled adults in addition to caregivers and providers to solicit feedback on what board members would like to see in the way of technology and policy to better support families with ‘medically complex’ kids. We have multiple disabled researchers on the team!

Seeking Community Members to Support a Research Study in Virginia

What is the study about?

Researchers from the University of Virginia and Virginia Tech are organizing a study to understand the needs of parents caring for children with complex medical conditions. Our goal is to learn about the challenges these parents face in finding and receiving help from community services in Virginia. We will use this information to create new technologies, policies, and/or resources to support caregivers from underserved communities.

How can I help?

We are forming a board of community members to assist with the study. This board will meet every other week for 1 hour on Zoom and will be compensated for their time. Board members will help find participants for the study and will provide feedback on the design of the study. You will assist in sharing our findings and designing potential solutions. In the future, we hope to do more research to test the usefulness of these solutions. 

Who can serve on the board? 

  • Parents of children with complex medical conditions
  • Disabled adults (who had one or more complex medical condition as a child)
  • Community resource providers (such as case workers, social workers, and virtual support group administrators) 

Why is this study important? 

Parents of CMC must work with a large number of support services to ensure the safe delivery of care within the home. As a result, parents of CMC report high levels of stress. Research shows that caregivers belonging to one or more minority groups face challenges in receiving help from services in their communities. For this reason, it is important to understand how we can help different caregivers of CMC receive the support they need. We will use this understanding to design effective solutions.

Who do I contact to get involved?

Please email Nora Scheer (wfr4da@virginia.edu). In this email, please include your name and whether you are a caregiver of a child with complex medical needs, an adult who had complex medical needs as a child, or a community resource provider.

The College Faire

Black text on off-white reads 
Virginia Tech
The College Faire July 29-30
Virtual
Registration & Information: tinyurl.com/VTCollegeFaire
Image of a 20 sided dice with the 20 facing up
The College Faire Logo with 20-sided dice, July 29-30 Registration at tinyurl.com/VTCollegeFaire

Our Tech & Dis research group + the gaming crew from VT Libraries will be hosting a 2-day live online event, The College Faire (Friday-Saturday, July 29-30, 2022), that includes sessions on navigating accommodations in college, disability history and culture, a student panel to share personal experiences, accessible technologies, along with social components in a synchronous online role-playing game centered around a more magical version of Virginia Tech. Get hyped. 😀

Over the course of the covid-19 pandemic, one way the disability community at Virginia Tech stayed together is by playing together, and we’ve developed competency we want to share in accessible gaming and social fun. Our two days will be spent in rotation through different sessions – both to game and to learn.

The College Faire has help from a college student team that includes many students with disabilities and significant gaming unit support through Virginia Tech Libraries (shout out to Alice Rogers and Disability Caucus co-chair Elizabeth McLain!). The event will include sessions led by experts from Cook Counseling, Services for Students with Disabilities, Accessible Technologies. This event is made possible through funding from the National Science Foundation (#1750260). 

The College Faire is only for high schoolers with disabilities. We will accept our first 20 registrants and place others on a waiting list. We’re hoping to run it again next summer if this beta test goes well!

#DisabilityDongle Article

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. 😀

Link to #DisabilityDongle Article on Platypus.

Tech and Dis Update

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.

A Typology of Disabled Technology Use

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.

General-Purpose Technology

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

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.

Cripped Technology

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.

References

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.

Further Reading

Hamraie, Aimi and Kelly Fritsch. 2019. “Crip Technoscience Manifesto.” Catalyst 50(1):1-34.

Starter Pack

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!

Prepping for STS 3284, Fall 2020 edition. Let’s get Dis-Oriented.

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 —

“Ableism, Technoableism, and Future AI” in IEEE Technology & Society Magazine

“Let Covid-19 Expand Awareness of Disability Tech” in Nature

Thanks!

Spring 2020: Bodies as Science and Spectacle

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!
Mondays 2:30-5:15pm

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.

Update:

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.

Thinking About New Access Statement for Syllabus

“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.”