Few concepts are more vexed in activist circles than normalcy. Changes that make life easier for some almost inevitably push others further to the margins. Almost 15 years ago, feminist philosopher Judith Butler referred to this phenomenon as the “intensification of normalization.” In his seminal The Trouble With Normal, English professor Michael Warner offered a similar caution, arguing that every expansion of the charmed circle of normalcy threatens to make life more difficult for those who stand outside its circumference.
These concerns about normalization and marginalization are at the heart of many contemporary conversations about disability. Even as new technologies are transforming the ways we see, move, and think, some are pushing back against the idea that our bodies need to be corrected in the first place. Inspired in part by the documentary Fixed, a Future Tense event in Washington, D.C., on March 4 approached the juncture of technology and disability from a variety of angles. Over the course of two panels, a group of activists, academics, and technologists discussed both exciting advances and the dangers such progress present to those it leaves behind or who opt out.
In his introduction to the first of the two panels, Slate’s Will Oremus noted that headlines about disability increasingly read like science fiction. But as both of his co-panelists showed, these advances belong more to the realm of science fact. Larry Jasinksi, the CEO of ReWalk Robotics, described his company’s primary product, exoskeletons that enable some paralyzed people to walk. Where the ReWalk system is entirely external, Jennifer French, executive director of the Neurotech Network, discussed implanted muscle stimulation technology, which has allowed her to sail competitively, among other activities, despite a 1998 snowboarding accident that rendered her quadriplegic.
Both French and Jasinksi acknowledged the limitations of these technologies, but they also expressed enthusiasm for the advancements that have made them possible. As battery capacities have expanded, for example, those who use these devices have grown increasingly independent. Along similar lines, Jasinksi noted that new sensor technologies and changing software and hardware capabilities have opened the door for medical innovations that would have been unthinkable a decade ago. Nevertheless, FDA approval processes have held up the dissemination of many devices, and what French called the “valley of death” between laboratory successes and real-world applications remains difficult to cross. Likewise, French noted, it can be difficult to encourage the medical establishment to change standards of care in order to incorporate new technologies into the recovery processes of stroke victims and others who might benefit from them.
Ultimately, however, the most important restrictions on disability technologies may be social as well as technical. Posing a question that would serve as a bridge to the second panel, an audience member asked French and Jasinksi whether the attempt to eliminate disability threatens to perpetuate negative stereotypes about the disabled. Indeed, during a Skype discussion, bioethicist Gregor Wolbring suggested that by emphasizing corrective technologies we may tacitly endorse ableism. As Wolbring defines it in Fixed, “Ableism is our obsession with certain abilities and the accompanying negative treatment of people who don’t have these kinds of abilities.” While reparative technologies can help some, Wolbring pointed out that they can also produce increasingly negative hierarchies of disability. As robotic exoskeletons like those produced by ReWalk become more common, for example, wheelchairs may become less desirable, leading to new prejudices against those who still employ them—whether they do so for reasons of access, adaptation, or personal choice.
On the panel that followed, experts held that disability is socially constructed. Julia Bascom of the Autistic Self Advocacy Network observed that disability has more to do with what’s going on in our environment than it does with anything fundamental to our bodies. Accordingly, she argued, we will never live in a world entirely without disability, as there will always be some who are ill-adapted to the environments we put them in. Building on this point, Teresa Blankmeyer Burke, an assistant professor of philosophy at Gallaudet University, observed that it’s important to remember that the worst pains are sometimes social rather than physical. Bascom and Burke both proposed that combating societal prejudices may be just as important—if not more so—as producing technologies that correct disabilities. Instead of working to get rid of disability, the panelists suggested, we should strive to combat the forms of discrimination that affect disabled people.
Ultimately, communication may be more transformative than scientific innovation. As Wolbring put it, “Technology can never fix social problems.” Every new development affects some people, Bascom added, and it affects each of them in different ways. It is important, then, to remember that no one device will work for everyone. Accordingly, Burke suggested, we should talk to people about their needs, asking them what they want instead of expecting them to accommodate themselves to a world designed around the needs of the abled.
Lawrence Carter-Long, the second panel’s moderator, noted that the Greek prefix “dis-” means “apart” rather than “without” or “absent.” In this sense, disability is something that stands at a distance from ability as we ordinarily understand it, but that space between does not make it any less vital. The future of disability, he implied, may therefore be about crossing that divide rather than trying to erase it altogether.