Image credit: Against Technoableism by Ashley Shew (W. W. Norton & Company, 2023).
It should go without saying that we need to center disabled people as experts about disability and technology. Yet if we do, we really trouble some underlying assumptions of the ableist world we’re in. In its simplest definition, ableism is bias or discrimination against disabled people or stigma against the status of disability—a bias toward non-disabled lives and ways of being. Anti-disability bias often underlies or reinforces other types of biases. Saneism (bias based on mental traits), audism (bias against deafness), and fatphobia are all manifestations of ableism. Perhaps less intuitively, white supremacy, racism, sexism, and xenophobia are also intertwined with ableism. For example, ableism is bound up in the ugly history of scientific racism that was used to justify prejudice against non-white people. IQ testing and racial measurement norms, both constructs of nineteenth-century scientific racism, still underpin how people see disability today. Ableism has also historically been used as a justification for racism and xenophobia in U.S. immigration policies, which depicted some Western Europeans as superior in intelligence, healthier and more resistant to disease, better citizens less motivated to crime, and all-around better candidates for immigration than those from elsewhere.
This type of thinking still informs modern immigration policy. Most disabled people are not allowed to immigrate to become a citizen in other nations. Disability automatically casts you as a burden, making you ineligible for permanent citizenship or residency in many countries. When nondisabled friends lament the current political condition in the United States and talk about moving somewhere with more progressive social policies, they don’t realize that this is a privilege that most disabled people can’t even dream about.
Ableism is deeply entrenched in language, which reflects how we think about things. When we use everyday insults like “idiot” or “moron,” both of which were originally medical diagnoses of mental disability but now are used as pejoratives, we’re employing language that reveals what we think about disability. Similarly, when metaphors of blindness are used to mean ignorance or other negative attributes (despite all the competent and knowledgeable blind people who exist in our world), it encodes the assumption that disability is limiting. Blind linguist Sheri Wells-Jensen explored many different languages, trying to find some use of the term (outside its use to describe literal physical blindness) that didn’t have a negative meaning. She found that this linguistic stereotype—blindness as ignorance—is nearly universal across languages.
Ableism is also written into the law. Many laws encode ableist discrimination, such as legal provisions that allow kids to be taken away from disabled parents by child services more easily than from nondisabled parents, for no other reason than the parents’ disability. Historically, municipal laws known as “Ugly Laws” criminalized disabled people for simply existing in public spaces—for being visibly disabled—as if our appearances were inherently uncivil. These anti-disabled laws very much coincided with racism and alarm about vagrancy, giving authorities an excuse to pester people they did not like the look of and arrest them for being in a public space at all. In the United States, the last of these laws was not repealed until 1976.
I tell my Technology & Disability students frankly that my class is biased, but in the opposite way from most of their other training. Many of my students are in training for the health professions, engineering, or science. Virginia Tech’s slogan used to be “Invent the Future,” and they believe they are part of making the future. I love it because I believe it too. My job as a humanities educator is to make sure they have the right context and understanding to do their work in an ethical, socially beneficial way. Too many people going into these professions want to go and design and make and therapeutize and “help” without ever having a deep understanding of the people they want to work with and for—without understanding the context of our lives.
In my class, disabled people are the experts about disabled people. We don’t read nondisabled accounts of disabled life, because these accounts have so often gotten our stories wrong. When we think about autism, we don’t consult the Diagnostic and Statistical Manual (DSM) or ask autistic people’s families about autism: we listen to autistic people themselves. Autistic adults are out there, many of them. They’ve written books like The Real Experts, edited by Michelle Sutton, and All the Weight of Our Dreams: On Living Racialized Autism, edited by Lydia X. Z. Brown, E. Ashkenazy, and Morénike Giwa Onaiwu (see Chapter 4). Organizations led by autistic folks like the Autistic Self- Advocacy Network (ASAN) and the Autistic Women and Nonbinary Network (AWN) do amazing work that truly values autistic people.
By listening to disabled people, we learn a whole new way of thinking about disability. In contrast, many charitable organizations (most of them run by nondisabled people) like Autism Speaks promote what is known as the “medical model of disability,” which often impedes flourishing of disabled communities. (I will talk more about this in Chapter 5, but Autism Speaks is highlighted as an anti-autistic group by many autistic activists and self-advocates, who have spoken out for many years about the way this organization is managed, its philosophy, and its lack of respect for autistic people.) The medical model is the idea that disability is a malady, something outside the norm that needs to be addressed, cured, eliminated, or remediated through medical or therapeutic intervention. Under this model, disability is something to root out, something to work against, something to fear or pity. Disability is framed as a problem that resides in individual disabled people—a problem that needs to be addressed. The solutions to this problem are different in different stories: examples range from early therapy interventions to technology like a prosthesis to preimplantation genetic diagnostics and elimination. Under this worldview, the role of a professional who “works with” disabled people is to identify the proper therapy, technology, or approach and deploy it in order to solve the problem. Non-disabled experts about disability make decisions about what disabled people need, about how to assess us and on what criteria, about where we belong (and make no mistake, they can institutionalize us if that’s where they decide we should be); about what benefits and technologies we qualify for; and about the trajectory of our lives—our life prospects, our job prospects (some of us are often pipelined into specific types of work); our education (including whether it’s worth giving us any education at all); even whether we can marry or have children. The Supreme Court case Buck v. Bell (1927) upheld the state’s right to forcibly sterilize disabled citizens, and it has not been overturned.
There are lots of problems with the medical model. Foremost, of course, is that it doesn’t let disabled people talk back or have agency or make our own meaning. But there are other, more philosophical problems. For example, how do we even create a coherent category of disability? How do we define what counts as a disability and what doesn’t? The category of “disability” doesn’t fall simply along the lines of impairment: we don’t count most people who wear glasses as disabled, although they are visually impaired. And not everyone who is disabled is impaired: some people with dwarfism who are otherwise healthy experience the world as disabling simply because things are built too tall—from shelving in libraries and groceries to airport and bank counters to high-top restaurant dining (which, to be fair, is awful for most people). Categories of disability are constructed relative to our expectations and norms.
As a good dis-orientation tells you, disability is a social construct—a mismatch between the self and a world that was designed to cater to normative bodies and minds. Disability is a made-up category. Of course, this made-up category has real effects, with enormous social, cultural, and personal significance and consequence. I’m obviously not saying disabilities aren’t real! I’m an amputee, and long before the idea of disability as a social construct captured me and others, people were born without limbs or were losing limbs—amputees show up in the fossil record. But why are an amputee, a person with dyslexia, a blind person, and someone who is bipolar all in the same category? (This sounds like the start of a joke.) What holds this category together? Disability, which today is a category of understanding, is actually a historical concept that developed relative to work, employment, and education. Historical and social factors underpin how disability is defined and how people are grouped.
The wheelchair is the universal icon of disability. It’s on restroom doors, parking spaces, and ramps. Yet technologists are always trying to replace the wheelchair (which is itself a piece of technology). Exo-skeletons and devices aimed at walking and climbing stairs—designed to make disabled people adjust to the world as it is, obviating the need for ramps or elevators or accessible doorways—are by far the most commonly covered mobility devices in mainstream media. The wheelchair, instead, requires the world to adjust to the disabled person.
The Social Model of Disability insists that disability is a social phenomenon: the problems are not in the bodies or minds of people but in the stigmas and barriers erected by society. According to this model, people count as disabled or abled depending on social context, social structures, and the built environment. The categories of disabled and not disabled depend upon notions of normalcy, as well as philosophical ideas of what it means to be human and who is deserving of rights. Even today, definitions of disability can be porous. Some amputees deny that they “count” as disabled after they master prosthetic use; some Down syndrome advocates remind the public that not everyone in their community has extensive medical problems; and some little people point out that their biggest barriers are those that come from social stigma and those created by the built environment. These categories vary across cultures and over time. In fact, there are cultures and historical periods that have had no category of “disabled”—mostly times when many more people had what we would now call disabilities, due to disease, frostbite, or other harsh conditions of life. Today, many of our ideas about able-bodiedness and disability come from classifications based on who is suitable for plantation or factory work: we call people “disabled” when they can’t perform “normal” amounts of physical labor.
Excerpted from Against Technoableism: Rethinking Who Needs Improvement. Copyright (c) 2023 by Ashley Shew Heflin. Used with permission of the publisher, W. W. Norton & Company, Inc. All rights reserved.
Ashley Shew is an associate professor of science, technology, and society at Virginia Tech, and specializes in disability studies and technology ethics.