The future is disabled

We need to take steps toward a more inclusive future—one that we all can inhabit.

I can’t buy it if I can’t reach it: The importance of access to Canadian consumers. Rick Hansen Foundation

By Ashley Shew, MIT Technology Review June 28, 2023

“Technology,” wrote the late historian of technology Melvin Kranzberg Jr., “is neither good nor bad, nor is it neutral.” It’s an observation that often doesn’t stick with people as they think about technologies related to accessibility. So many of our dominant stories about technologies for disability, access, and mobility paint them as objects of empowerment or heroic, life-changing panaceas for social ill. In this issue, we take Kranzberg’s assessment to heart with articles that speak to technological ambiguity and against popular narratives about these approaches.

As a multiply disabled person, I too can sometimes get caught up in the commercialized hype-y hopefulness around promised tech: a newly made leg that fits just right, or a promising new drug for my autoimmune issues, or even a new app that could issue the right reminders to keep me on task. But the benefits of good devices, apps, and technologies can often be temporary or lopsided or require my constant investment, care, and attention to make them work with me. Most of the bugginess and time-suckiness of new tech is never talked about in media coverage about assistive and accessible technologies: we’re told that some humanitarian engineering or rehabilitation team (what heroes!) is working on the problem—the problem being described as people who don’t fit a particular mold. The Cyborg Jillian Weise, my favorite cyborg poet, writes—in the voice of men positioned as engineers/therapists/“helpers” in a dream—“Don’t you like it. / Don’t you laud us. / Don’t you god us.”

These men (and they are mostly men) typically aren’t the ones who have to live with what they created; they aren’t the people who are positioned as objects, obstacles, and inconveniences. For people intended to use the technology, not all advancements are as desirable as they might seem. There’s much more ambiguity in use—neither good nor bad, nor neutral!—once you move away from the hype.

Often when developing accessibility tech, people assume levels of access to technology that don’t exist. They fail to take into account places where lack of internet access is a continuing barrier, where not everyone has smartphones to use a required app, where good devices are touted but not easy to afford or get. Projects often are not properly centered on the communities they serve, or fail to understand that these communities may pursue their own desires rather than those reflected in the dominant culture.

“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.

Explore the issue

Source MIT Technology Review