By Ashley Shew
Far too often, when people write and talk about technology and disability, stories are deeply shaped by ableism. Often when devices are painted as “solving the problem of disability” or “empowering disabled people,” they suggest that being disabled is itself a problem, and that people should try to be as nondisabled as possible. But pretending to be nondisabled is not a great way to live — to be in hiding or denial, to not give your body and mind the rest they deserve, to hurt yourself trying to live up to expectations and infrastructure sometimes literally designed to keep you out. Technology itself gets painted as heroic and important — and, please, investors, throw more money at the tech industry — when any disability is mentioned. Disability is often appealed to as a justification for technological development, and as a moral imperative toward investment in technological research. This is technoableism as I describe it in my book, Against Technoableism: Rethinking Who Needs Improvement.
It’s important to pay attention to what actual disabled people think about technology to get a better perspective. We should positively bias ourselves toward disabled narratives because so much of our world has already been built biased against disability. Most experts about disability have been nondisabled people; this constitutes a situation ripe for injustice, and for the undermining and paternalizing of disabled people even when we tell our own stories. Not every disabled person has an end-goal of being nondisabled, or even being less disabled. Some of us may be looking for help with pain or a specific task, and some of us are well-adapted with technologies we have and use (and maybe would just like to get them maintained a little more easily). But the story of technology and disability needs to be led by disabled people themselves, and we need a significant shift away from deference to “expertise” that comes from outside of our communities.
In that vein, I’m extremely proud to be guest editing this symposium on Bill of Health that features a majority of disabled writers reflecting on some of the weirdnesses of how we imagine therapy, intervention, and technology. The stakes of not heeding disabled-led conversations on these topics in health care and health policy are so high for us.
Over the coming days, this symposium will feature writing by:
- Dom Kelly on building disabled organizations that align with the values articulated by the Disability Justice movement. What Kelly is doing with New Disabled South has excited me for many months, and it’s been great to hear more about the underpinnings and reflection on being intentional in disability work when so often nonprofits exploit workers.
- Maxfield Sparrow on “Autistic Screen Time: Swipe Left on Stigma.” It is essential reading; the article points to the cruelty in how we situate advice and research around screen time for autistic people — and speaks to a much broader field of research that serves to always compare and situate autistic kids against typical peers, and never letting autistic kids be autistic and respected on their own terms.
- Josh Halstead shares his experiences using voice recognition apps in ways that should make us all think more deeply about what data we are forced to give up in order to use technologies that supposedly make our lives easier.
Other articles in this issue focus on representation of disability in very different ways.
- Alice Fox explores embodiment and sanity in videogames, and how sanist and ableist the very structures of some of these games can be (and suggests corrective and creative possibility here).
- Chorong Park shares her work about gaps in how we think differently (and in ways that suck) about approaches to therapy for older people; therapists working with pediatric clients get to emphasize play and joy: why can’t we have that as we grow old?
- Patricia F. Anderson and LaTeesa James reveal the difficulty and barriers in trying to categorize and figure out disability in PubMed search functions.
Whether we are understood as characters, as therapy clients, or even as data, there’s something wonky in how disability is portrayed — something that doesn’t fully account for us or do anything to reckon with a history of disability that has marginalized and othered us, made our lives seem lesser or strange. Representation, in so many modes, plays a huge role in how we get sorted and understood — how we are read by therapists, by doctors, by researchers, by gamers, and by the world more generally. These representations shape our lives.
Our representation is all the worse when news stories about exoskeletons and new prosthetic components rarely feature disabled users. Instead, I’ll share the way Bill Peace, blogger at The Bad Cripple, describes it: “Your typical bipedal person exposed to a barrage of misleading news stories is led to believe all paralyzed people share one goal in life — walking. Please cue the soaring inspirational music accompanied by the brave and noble young man or woman struggling to walk surrounded by health care professionals, computer scientists, and engineers who share the same ritualized ideal.”
The ideal is conceived as looking nondisabled: walking or talking or some other function done “normally” (even if it’s not what we ourselves take as important). Few ask themselves questions like the main character of Harriet McBryde Johnson’s Accidents of Nature, “Can using a wheelchair be a choice, and not a failure?… what if normal isn’t the only way to be?” (page 41).
But where does choice lie here? There’s a larger framework, not just around individual users and our choices, but around the power of corporations in our lives. Sometimes it feels like we have real choices — about which devices to use, which therapists to quit seeing, for instance. But so often these choices are limited within a medical-industrial complex where insurance gatekeeps needed devices; where your doctor says “you’re too young to need an ADA parking placard” but having a placard would make it so that you could get through more things in a day; where there are restrictions to how much Adderall is allowed to be produced each year and more prescriptions than supply; where your office is risky to be in due to poor ventilation; where an ambulance ride to the ER for anaphylaxis after you accidentally get exposed to traces of peanut is “out of network” and costs you for years to come.
But there’s more. Even if you are brave and try the latest technology, helping the science along, you might find it soon becomes obsolete, and you lose whatever gain you had — and are left worse off for it.
Two stories hit my newsfeed this year that continue to haunt me: one of the planned obsolescence of a cochlear implant given to an Indian child, and another about an Australian woman begging to keep her brain implant. In both instances, the disabled person in question wants the technology — and it was given much promise and fanfare. In the first instance of the cochlear implant, an Indian governmental program helped a child to receive a cochlear implant at age 4, but the device, meant for a “developing market,” will no longer be serviced and requires a “compulsory upgrade” to function, which is not covered or subsidized or affordable. Even taking the best advice of officials and advantage of governmental programs, this child is left abandoned by a company who cares for (as in, literally only maintains) the latest technology. They care about that which they can continue to make money on — those who they can continue to make money on. And, so, we see a situation unfold where there are no choices or agency provided in the context of a push for “shareholder value” or other business-based imperative.
The second case involves a woman with severe chronic epilepsy who was enrolled in a study — this woman was implanted with a device that would warn her before her seizures happened, letting her plan ahead. With the device, she could drive again; it is described as giving her new agency over her life — she could now make decisions and plans, in a way impossible with her condition prior to this time. The device changed her life. But the company ran out of money (and no longer exists), and users were advised to get their devices removed. And so hers was, against her pleas and attempts to negotiate with the company. She is worse off for its removal. Reporting for the MIT Technology Review points to interesting questions about symbiosis with a machine, about cyborg existence and agency, and about whether removal constituted a human rights abuse under these circumstances. These are interesting questions, but I linger in thinking about the impacts on her personally.
Using disability technologies leaves us uniquely vulnerable, dependent upon systems of maintenance, health, therapy, and more. Those systems often fail us. It’s time to listen to disabled wisdom, some of which you can find here.
Ashley Shew is an associate professor of science, technology, and society at Virginia Tech, and specializes in disability studies and technology ethics.
