This project sought to highlight the disconnects between science and engineering practice and the lived experience of disability through  historical and contemporary narratives and context. Often popular and scientific narratives offer therapists, scientists,  doctors, and designers as experts about disability; in science and engineering particularly, projects relating to disability typically start with medicalized understandings of disability that focus on parts/functions, diagnoses, and “challenges,” where being disabled itself is seen as a challenge, and in fields where disabled people are often already underrepresented. 

The motto of the disability rights movement is “Nothing About Us Without Us”:  things done about disability or for disabled people need to be led by, created with, or planned alongside disabled people. It’s not good enough just to have someone’s best interests in mind – especially when you haven’t ever listened to the person whose “best interests” you are trying to uphold. Often in stories about technology and disability we see engineers held up as heroes for working on disability technologies, interviewed and praised, when we might only have pictures of the disabled person in some gear or in an MRI machine and no actual interview or words from them. But what disabled people think of disability technologies and know about lived context is crucially important to their success. Disabled people have a ton of knowledge, invent and remix for ourselves,, and navigate a hostile world that often researchers are completely unaware of. 

One important outcome of this project was development of work about technoableism – the idea that many of the ways we think about technologies for disabled people are ableist. Disability is a social phenomenon, not simply  a medical one. By reading and analyzing stories written by disabled people through this project, the research team has developed material that highlights what disabled people actually have to say about technology, our role in technological work, and our lives alongside technology. The project highlights the ambiguity of technology, the role of disabled people in shaping and making technologies and tools, the inaccurate media narratives that have shaped how we think about disability, the “awareness” exercises that don’t get disability quite right, the frustration of always being seen as someone else’s project, and the deep gulf between narratives led by disabled people about technology and those we usually hear in STEM. Tangible products about technoableism are in publications on this topic, as well as community and scholarly discussion.

Another outcome of this research is in education. This project not only sought to create  material to be used in STEM classrooms and beyond. The class Technology & Disability features writing almost exclusively from disabled people (the real experts on this topic). Too often science and engineering students read/hear about disabled people rather than from disabled people. Who we set up as experts matters. Two tangible educational outcomes are the drive of annotated bibliographies of existing disabled writing, prepared for fair use in educational contexts, and in the Open Educational textbook Technology and Disability, edited by Hanna Herdegen and Ashley Shew, with writing from student researchers organized thematically by “counternarrative” against different tropes, additional modules of themes found in disabled writing,  and educational exercises that can be used in classrooms. These will both be released in early 2024.

A final outcome of this project is in outreach with an emphasis on cross-disability community and making disabled expertise more visible. Nothing About Us Without Us. In this vein, the team has sought to make materials as accessible as possible, to offer flexible and multiple avenues for learning and sharing, to honor different formats and communication methods. This project brought different guest speakers into classrooms, and it has provided a camp experience for high schoolers and then (with covid)  an online event about STEM and disability. In 2020, the team organized and hosted “Choices & Challenges: Counternarratives on Technology and Disability” that featured panels of disabled experts in conversation on two topics (themed: Autistic Technology and High-Tech Fixes) and a panel of art and music about disability and cyborg existence. 

While this has been a scholarly project, the team has attempted to work publicly and accessibly. By documenting and disseminating this research, this project has potential impacts in infrastructure, design, planning, engineering and science courses, assistive technology spaces, and various and varied disability communities. We hope this work promotes better modes of engagement between STEM communities and the people they sometimes desire to serve. Disabled people know a lot about our current infrastructure,  planning, care, and the experience of living with, maintaining, and depending on technologies. Disability is a category and experience that impacts everyone; planning that includes disabled people improves the world for all. And, as longtime activist, ADAPTer, and disabled legend Anita Cameron puts it, “You erase us at your peril.”

Last Modified: 12/29/2023
Modified by: Ashley Shew