Disability Studies Professor Explores ‘Double Bind’ of Medical Technology in New Book

Disability Studies Professor Explores 'Double Bind' of Medical Technology in New Book

Medical technology is often viewed as a neutral tool for healing or curing; however, for many disabled people, it represents a complex power dynamic between their own lived experiences and clinical expertise.

Dr. Rebecca Monteleone, an associate professor of disability studies, explores this tension in her recently published book, "The Double Bind of Disability: How Medical Technology Shapes Bodily Authority" (University of Minnesota Press, $25).

The book, which was reviewed in the journal Science, challenges the assumption that the tools used to treat conditions are separate from social values.

"This book came from a pretty simple insight: technologies aren't neutral," Monteleone said. "The things we make and use change our worlds - physically, socially, politically. And yet, we tend to think about technology as separate from our social experiences."

Through a series of interviews that began in 2018, Monteleone focused on three specific case studies: prenatal genetic testing, deep brain stimulation and do-it-yourself artificial pancreas systems.

In examining the lives of people who use these technologies, she identified what she termed the "double bind."

"Disabled people are expected to be responsible for managing and adapting their own 'bodyminds' to a world not built for them through medical intervention, but at the same time they constantly have their authority and lived experience questioned in favor of medical expertise," Monteleone said. "In clinical settings, when making decisions about using these technologies, people are expected to be responsible but never allowed to be authoritative."

Monteleone, who teaches the course Disability, Technology and Society, said the research has directly influenced her work in the classroom. To her students, she emphasized that the subject matter isn't so much about the technical as it is about the humanity.

"When I first started writing the book, I thought it was about technology," she said. "But what I found is that it's really a book about people and relationships and power."

The book posits that to create better medical outcomes, clinicians and bioengineers must prioritize the firsthand expertise and experience of those living with disabilities.

"We can do better," Monteleone said. "We can make medical technologies that reflect what people want and need. We just have to listen."