Ashley Shew’s Against Technoableism: Rethinking Who Needs Improvement and Rebecca Monteleone’s The Double Bind of Disability: How Medical Technology Shapes Bodily Authority maintain that disabled people are the most knowledgeable on the subject of disability. Therefore, they are the experts, and we need to listen to them if we want to fully know about the topic. Both also argue against ableism and technoableism. Loosely defined, abelism is the discrimination and social prejudice against physically or mentally disabled people, while technoableism is the promotion of technology as a wholesale cure for disability, often invoked in a way that positions the disabled body as fundamentally broken. Despite agreeing on these contours, and the need for a social model of disability (rather than a medical one), Shew and Monteleone wrote two quite different books.

Ashley Shew is an active disabilities advocate and an Associate Professor in the Department of Science, Technology, and Society at Virginia Tech. In her book, she mentions that she frequently teaches students training for health professions. Her writing style brings to mind the way good teachers help us comprehend the nuance and complexity of a subject. Against Technoableism is deeply thought out and far-reaching; yet, it is so lyrical, witty and relational that I was impressed by the ways this author detailed aspects of the disability experience that had never crossed my mind. She describes it as “a book about the stories that disabled people tell that nondisabled people usually aren’t interested in” (p. 4).  The chapter titled “The Neurodivergent Resistance” shows how effectively she writes as she positions herself relative to her material. It begins, “This chapter is ‘outside my lane.’ I am not autistic, but I’m writing here about techniques and technologies for autism specifically, and about neurodivergence more broadly.” (p. 77).

Shew, a storyteller, not only presents disability through her own story, she also weaves in the stories of those she knows. Describing herself as “… a hard-of-hearing, chemobrained amputee with Crohn’s disease and tinnitus and possibly some undiagnosed anxiety or PTSD related to my cancer treatment” (p. 11), this author opens the door for a broad discussion on disability and one that also explains that many disabled people have more than one disability. In addition to intertwining her story with those of others, she blends in commentary on disability tropes, memes, depictions of the disabled in entertainment and by the media, and history. Another important topic she mentions is the areas of disagreement within the disability community. The last chapter looks to the future, juxtaposing disability with environmental changes, space travel, and life’s uncertainty. In summary, Against Technoableism covers what accessibility offers, the dynamics of living with a disability, and the difficulties in living in a society that is set up to cater to those who are abled.

Rebecca Monteleone, an Associate Professor in Disability and Technology at the University of Toledo, presents a more demanding read in The Double Bind of Disability. Using qualitative sociology as her methodology, she presents three case studies intended to expose new relationships among disability, authority, knowledge, and responsibility. Each is focused on presenting situations where individuals face conflicting expectations or messages about their experiences of disability, or about disability in general. Although the author claims she is presenting an inductive argument, it read more like a deductive one because her study’s design and small sample size suggested she got the results she was aiming to produce.

The content of Monteleone’s study, which volume reads much like a PhD dissertation, was built around a series of semi-structured and unstructured interviews with users of the technologies she is studying. These interviews were supplemented with additional source material. One major flaw in the study stems from the way she puts the research together. Perhaps the interviews would have worked better and have been more compelling if she had chosen better supplemental material. I found myself turning to Google search frequently for missing information and clarification.

The second major flaw was her handling of the medical and biological details. Each of the case studies is intended as an example of how the medical system asserts its authority over patients in terms of epistemic invalidation and neoliberal body management. The first, noninvasive prenatal genetic testing, drew from a very small sample of people within her disability network and treats the material sketchily. She, and those she interviewed, talk extensively about not receiving adequate information about issues and outcomes of a prenatal genetic test recommended by medical personnel. However, she neither integrates the factual descriptive information about possible disabilities being tested for nor does she fully summarize the associated genetic issues. Arguing that the information given was too sparse without telling us what this information is seemed like a lost opportunity. I easily found this information online in academic papers, on medical websites, on disability websites, and so forth.

The more complete second case study looks at deep brain stimulation through the eyes of those who use it, those who care for them, and hospital guidance. The modern deep brain stimulator is a surgical implant delivering electrical impulses to targeted areas of the brain. It is intended to help modulate dysfunctional circuits in the brain so that the brain can function more effectively, although it does not cure any condition. Rather, it is intended to mitigate and manage symptoms such as tremors. Commonly used with Parkinsonian individuals, the implanted electrodes send electrical impulses to the areas of the brain that control gait, balance, and tremor.

Despite her focus on epistemic invalidation and neoliberal body management, Monteleone does a good job in this case study because she provides more specifics. Among the particularly strong sections are those where she points out several design flaws ascribable to the lack of patient input in design conception. For example, one informative vignette quoted a user who explained that her implant is powered by a battery pack that rests just under her clavicle. Because the battery pack has a square edge, when she raises her arm, it juts out. Another example centered on an updated device that replaced analog buttons with a sleek touch screen. It seemed that the designers were unaware that many people with Parkinson’s and tremors find touch screens difficult, if not impossible, to use.

Less effective in this study was Monteleone’s commentary on how poorly medical professionals treat the disabled. Her many examples of a failure to listen and understand a patient are not unique to the disabled. This communication gap is often commented upon by those outside of the disability community. For example, as someone who is not considered disabled despite being too short for some occupations and a life-long wearer of corrective lenses, I, too, have encountered physicians who did not communicate well. Over the course of a year, one doctor I no longer see offered four different interpretations of the same test, some better than others. Another doctor told me that at my age it was impossible for my body to have an experience I told her I was in fact having. Since she was just out of medical school, I decided to move on, concluding she had read some incorrect information in one of her textbooks.

The point Monteleone wanted to highlight in her discussion is the difficulty in comprehending another’s embodied experience. Arthur Kleinman’s book, The Soul of Care: The Moral Education of a Husband and a Doctor [1], offers an insightful perspective on this. He explains how those intimately involved with a disability or a medical situation bring a more encompassing body of knowledge to the subject. Writing from both caregiver’s and physician’s perspective, he tells us that his wife had a rare form of Alzheimer’s disease, a disease considered a disability because it significantly affects a person's ability to perform daily tasks and live independently. Her form of the disease affects only 5% of the Alzheimer’s population. It began in her occipital lobes, which meant that she became blind before acute dementia set in. Among the more poignant aspects of the volume are the discussions that center around how he spent his entire career studying illness and caregiving only to realize how much he did not know until he took on the role of being his wife’s caregiver on a daily basis.

How individuals with Type 1 diabetes developed a DIY solution to insulin measurement is the third topic and the most compelling of the studies. It benefitted immensely from being based on an international pool of participants and because it included diabetics with professional jobs that intersected with medical innovation for diabetes. Type 1 diabetes is a chronic autoimmune disease where the immune system attacks and destroys insulin-producing cells in the pancreas, leading to high blood sugar levels. With this type of diabetes, monitoring and managing food, exercise, blood sugar, and insulin is quite user-intensive and complicated.

This case study introduces a community of diabetics who developed and use a device they designed that consists of a continuous glucose monitor, an insulin pump, and a smart device to run an open-source algorithm that automates insulin delivery based on input data. The device relieves users of much of the day-to-day cognitive burden that is a part of living with the condition. This community’s project is presented as a counterexample to the earlier studies that were framed around medical professionals controlling submissive patients, a key thread of the book.

A predominant component of this case study is that physicians are always saying a “cure” is on the way, although nothing changes. I wish she had added some balance here (and elsewhere) that explained that medicine is not an exact science. Just as she might have included some people within the medical community to speak about the medical perspective in all three studies, this study might have included diabetic physicians in some form. For example, even before the DIY group was offering its community-initiated device, we can identify community and individual efforts to aid in the treatment and care of the community of diabetics. Robert Lawrence (1892-1968) come to mind. He was both a British physician and diabetic. An early recipient of insulin injections in the UK (in 1923), he went on to devote his professional life to the care of people with diabetes. Lawrence’s legacy includes founding the British Diabetic Association and writing extensively on the subject.

In summary, Monteleone’s repeated indictments of the medical community, coupled with the lack of comprehensive medical and biological information, made the book seem unbalanced to this reader. My question of why all kinds of useful factual information was omitted was partially addressed in a 2025 interview posted on the publisher’s website [2]. During the interview, Ashley Shew asked Rebecca Monteleone how she found the people she interviewed for the case studies. Monteleone’s answer indicated that the omission of medical perspectives was by design. She explained that she decided that including clinicians who were not disabled would bias the studies because clinicians who are not in disability studies would end up invalidating community-based experiences. She does not say why she didn’t then recruit disabled physicians for the study. As Monteleone puts it:

“I will say I think that is a lesson I am grateful to have learned from disability studies. That is coming directly out of having a background in disability studies, because I think those of us who have done [some] kind of empirical work in this space have all been subject to that cherry picking. In other studies, … where you have to go through the gatekeeper to get access, … the gatekeeper's like, let me present the person who's going to give you the brand pitch for my social service organization. And so, because I was already aware of some of those dynamics, there was kind of an intentional choice to kind of skirt that sort of recruitment [3].

It seems that groups like Docs with Disabilities [4] would have offered a path toward finding subjects capable of integrating medical and disability perspectives. In any case, this interview did essentially confirm my sense that Monteleone’s focus was on gathering evidence in support of an argument she wanted to present as an empirical study, rather than critically investigating the parameters of her topics. While I don’t disagree that writings about disability are frequently divorced from the embodied experience of disabled people themselves, I do think she could have done more to bridge the gap.

In Against Technoableism Shew estimates more than 15% of the current population has some form of disability —psychiatric, learning, developmental, cognitive, sensory, or physical. The World Health Organization provides an even higher number. Their Global report on health equity for persons with disabilities, says an estimated 1.3 billion people globally (16% or 1 in 6 of us) experience significant disability, adding that this figure has grown over the last decade and will continue to rise due to demographic and epidemiological changes, underscoring the urgency for action [5]. Rates are higher among older adults, vary based on definitions and survey methods, are higher in rural areas, and increase significantly with age with up to 50% of people aged 65 and older reporting a disability in some studies.

Thus, in essence, disability impacts people in all facets of life. While some progress has been made in recent years to provide services and accessibility, the world is still far from realizing that many persons with disabilities continue to die earlier, have poorer health, and experience more limitations in everyday functioning than others. Clearly, both books reviewed here recognize this as they in effect offer manifestos for a social model of disability, Shew’s book communicates more effectively and is thus more accessible [sic]. Both books similarly convey the need for more comprehension of the systemic barriers, negative attitudes, range of disabilities, and social problems that accompany living with a disability. These manifestos also confirmed my sense that we need to frame our conversations about disability better. My primary reservation about both treatments reviewed here is that the urge of these two authors to supplant what they perceive as the medical model of disabilities with a social model seems to sidestep how closely biological and genetic perspectives are interwoven with social and environmental modifications, as  discussed in my Neuroscience and Art [6].

Notes

[1] Kleinman, A. (2019). The Soul of Care: The Moral Education of a Husband and a Doctor. Viking.

[2] The interview is the University of Minnesota Press Episode 124 , “Medical technology and bodily authority.” The website is https://www.upress.umn.edu/9781517917685/thedouble-bind-of-disability/.

[3] The transcript of the interview referenced above is posted at https://share.transistor.fm/s/a581e7be/transcript.

[4] The Docs With Disabilities website is https://www.docswithdisabilities.org/.

[5] World Health Organization (WHO). (2022). Global report on health equity for persons with disabilities (ISBN 978-92-4-006360-0). https://www.who.int/publications/i/item/9789240063600 and https://www.who.int/newsroom/fact-sheets/detail/disability-and-health?utm_source=chatgpt.com.

[6] Ione, A. (2024). Neuroscience and Art: The Neurocultural Landscape. Springer.