By Leslie King
The trichotillomania bracelet looks unassuming, just like any other smart technology worn around the wrist. But rather than counting steps or heartbeats, it serves another purpose.
The wristlet vibrates an alarm when it tracks the user subconsciously beginning to pull out strands of hair. For those with trichotillomania, instead of following the compulsion to yank out their hair, the wireless device helps them notice the gestures and change their behavior.
This tool, along with other technologies for the disability community, intrigues Ashley Shew, an assistant professor in the Virginia Tech Department of Science, Technology, and Society. In July 2018, she received a National Science Foundation Faculty Early Career Development Award that will allow her to investigate the personal accounts of people with disabilities, as well as their opinions of the technologies designed for them.
The prestigious honor, given to junior faculty who exemplify the role of teacher-scholars through outstanding research and education, is better known as the CAREER award.
“I’m interested in the storylines that disabled people tell about their bodies and how their relationships with technology differ from popular and dominant narratives we have in our society,” said Shew, who herself identifies as disabled.
Her research focuses on discrepancies between how scientists and engineers understand and explain their work related to disability and the actual needs and wants of people with disabilities. Shew said there is a disconnect between media-based depictions and reality within the realm of science, technology, engineering, and mathematics (STEM) education and technology design.
“This means people aren’t always designing with real users in mind, but with ideas about what users want based on the entertainment media,” she said. “This is problematic because nondisabled people create and depict disabled people. There is little authentic disability representation in the media, so all these media-driven narratives about technology get fed into engineering.”
Shew cites several misleading media-supported tropes. Negative stereotypes encourage the public to view disabled people with pity, as sinners or fakers, or as resource burdens. And while the trichotillomania bracelet is small and unobtrusive, many technologies, such as wheelchairs or exoskeletons, are not. Some people who could benefit from viable supportive devices might shy away from them to avoid public skepticism or castigation.
And the reverse depictions are just as misrepresentative.
“There are also tropes about inspiration and courage,” Shew said. “The one people lean on, which I’ll be assessing through this grant, involves a focus on inspiration and courage, along the lines of, ‘You’re such an inspiration because you’re disabled in public.’ If you’re not inspiring, you’re courageous to overcome what you’re overcoming. If we believe you’re truly disabled, then if you’re out having a regular life, you’re considered heroic in ways that don’t map onto real life at all.”
Designers often create technologies with this trope in mind. An example of this is a surge of 3D-printed hands for young amputees. Marketed with terms such as “superhero” hands or arms, the branding presents these children as different from people without disabilities. Shew describes this phenomenon as techno-ableism, when technology makers try to empower others with helpful tools but use rhetoric that has the opposite effect. As part of her CAREER award, Shew will publish a book about this phenomenon.
Shew will also seek to counter unrealistic portrayals of people with disabilities by educating creators of disability technologies. Her research will incorporate interviews, memoirs, and the compilation of existing materials into classroom public outreach, an open-access website, and a textbook to complement existing STEM educational resources.
Shew is collaborating with Alexander Leonessa and Raffaella De Vita, associate professors in the College of Engineering, who have also received CAREER awards. In 2019, she will work with them through Virginia Tech’s STEMABILTY, a summer camp for students with disabilities.
A Virginia Tech faculty member since 2011, Shew received a Certificate of Teaching Excellence in 2017 and a Diversity Award in 2016, both from the College of Liberal Arts and Human Sciences. Also in 2016, she received the Sally Bohland Award for Excellence in Access and Inclusion from the Virginia Tech office of Services for Students with Disabilities.
Shew co-edited Spaces for the Future: A Companion to Philosophy of Technology with Joseph Pitt, a Virginia Tech professor of philosophy. She is also the author of Animal Constructions and Technological Knowledge, published by Lexington Books/Rowman & Littlefield.
Shew is the fourth faculty member in the College of Liberal Arts and Human Sciences to receive the prestigious National Science Foundation CAREER Award in the past several years.