“Normal” leaves a lot of people out, and it isn’t, by itself, an inherent good.
In this issue of MIT Technology Review, you’ll read important stories of ongoing issues around accessibility. Lorena Ríos describes traveling to Ciudad Juárez, at the Mexico-US border, to explore a US Customs and Border Protection app for asylum seekers. Chancey Fleet shares with us her work at the New York Public Library on expanding the blind community’s access to images and design. Colleen Hagerty profiles law professor Monica Sanders, who is working to highlight issues of internet accessibility in planning for climate disaster. Corey S. Powell discusses ongoing work on “sonification” projects in astronomy, while Julie Kim explores the landscape around access to effective assistive communication technologies.
While reading this issue, I’ve been thinking about how equity and flexibility of use are basic principles of universal design. One thing that stood out for me in Ríos’s story about CBP One, the app for asylum seekers, is how the limit to one app and pathway has hurt those most in need of asylum, for whom access is severely constrained by those technological limits. The stories on data sonification and tactile images exemplify the necessity of direction from disabled people to enrich our educational, scientific, and everyday pursuits.
I’ve been writing a book on the stories we tell about technology and the stories we tell about disability, which explores what accounts of disability-related technology get wrong by centering helpers over users. We see this with projects like exoskeletons pitched as devices to help people walk again, or interventions that seek to normalize autistic behavior. All this is done without listening to what the real experts say they want. So many forces frame marginalized people as problems and seek to control, categorize, or police us—or require us to take particular routes to be “worthy” of access in the eyes of a dominant culture.
But “normal” leaves a lot of people out, and it isn’t, by itself, an inherent good. We often devalue the creativity and intelligence of people outside that frame rather than appreciating them as creators, tinkerers, and knowers. We need more ways to exist than the narrow confines of ableism and white supremacy allow.
As the title of Leah Lakshmi Piepzna-Samarasinha’s provocative book has it, the future is disabled. Making space for disabled people and disabled futures is necessary to truly face what lies before us. With climate change, for example, we should expect changing disease patterns (more tick-borne diseases like Lyme). With environmental racism, we already see higher rates of asthma and other chronic conditions (and this will continue). In the long tail of long covid, we should expect long-term changes in a large segment of the population, similar to what we’ve seen with post-polio syndrome and with shingles following chicken pox.
So often we’ve been sold the promise of futures that work to eliminate disability via eugenic projects, gene editing, and therapies designed to move people toward perfect speech or gait. There is often a focus on cure or rehabilitation as a prerequisite for participation; a focus on “solutions” for individuals, rather than infrastructure to enable diverse communities. There’s a certain unfair “boot-strappiness” imposed on individuals who are often at the mercy of larger systems of exclusion. We ask for people to bend themselves in time and space to fit a vision of worthiness, of goodness, of productivity and moral and physical uprightness, that is absolutely the opposite of inclusive, inventive, and open.
We need more ways to be. Part of that involves looking to alternative ways of sensing, processing, moving, understanding, and communicating, and seeing those ways as good and worthwhile. Opening ourselves up to all-access thinking and disabled expertise will mean a more livable world—one that we all can inhabit.
Ashley Shew, an associate professor in the Department of Science, Technology, and Society at Virginia Tech and author of Against Technoableism: Rethinking Who Needs Improvement (2023), is guest editor of this issue.