Original Research

Idiosyncratic and Non-Unitary: Disability Memoirs and Antinormative Bioethics

Matthew Wolf-Meyer

Rensselaer Polytechnic Institute
wolfmm@rpi.edu

Abstract

In this article, I argue for an antinormative bioethics based in disability experiences drawn from memoirists’ accounts of idiosyncratic needs and desires that are obscured by normative impulses in mainstream bioethics. Bioethics has long been shaped by a commitment to the normal, which often casts disabled people and the category of disability as anterior to bioethical concerns about individual rights, protections, and property. Focusing on disability experiences and the category of disability—as developed by disability studies scholars and supported by materialist feminist science and technology studies—provides a grounding for an inclusive bioethics that creates livable lives through careful and creative alliance building in and beyond the contexts in which bioethics has traditionally operated. I focus herein on the non-unitary experience of autism and the facilitation of people who identify as autistic to develop this inclusive and responsive bioethical praxis.

Keywords

cybernetic theory of disability, communication, autism, normativity, disability memoirs

Introduction

Since its inception, American bioethics has tended toward the normal as normative (Fiedler 1996; Jonsen 2003; Stevens 2000). In the US context, this tendency has resulted in a focus on individual rights and protections, which has served patients and at-risk individuals and communities by protecting their interests against coercive and abusive scientific and medical practice, as in the case of the Tuskegee syphilis experiment (Jones 1993). The normative impulse in American bioethics has also tended toward the protection of individual property rights, as in the case of protections of tissue samples and DNA provided by patients and research subjects (Waldby and Mitchell 2006). As a system of thought and advocacy based in its social context, these normative concerns reflect the interests of many Americans, particularly as they deal with concerns that arise in the context of for-profit medical and scientific practice (Elliott 2011). Because American bioethics is rooted in ideas about the individual and property, many of the concerns that bioethicists adjudicate—particularly in clinical and laboratory settings—result in satisfactory, if not ideal, outcomes for patients, family members, caregivers, clinicians, and researchers because they can be financially compensated in the context of a market-based system of care and personhood (Fox et al. 2008). One area where bioethics continues to face recurrent tensions is in its relationship to disability (Goering 2008; Newell 2006). These tensions have come in two forms: first, there is a eugenic strain in some bioethics, based upon normative ideas about the human and what the aim of medicine is (Garland-Thomson 2020; Myser 2003); second, disability, by its very experience, challenges normative expectations based on the varied and non-unitary experiences of disability (Davis 2002; Ginsburg and Rapp 2013; Kafer 2013).

In this article, I focus on the category and experiences of disability as a way to articulate an antinormative and inclusive bioethics of the idiosyncratic. Rather than a bioethics of the normative, which tends toward exclusions of disability experience and expertise (Hartblay 2020; Stramondo 2022)—and potentially compounds implicitly eugenic conceptions of the body politic—a disability bioethics that relies on disability as its foundation serves as a critique of bioethics-as-usual, specifically its focus on individual and property rights as immaterial goods. Such an attention aligns with Louise Hickman’s (2019) characterization of the ethics of crip technoscience, which she suggests offers knowledge-from-below; I prefer to situate disability experience as marginalized rather than existing in a hierarchy, which allows for the possibility of centering disability experiences instead of needing to subordinate disability or ability as the primary basis of knowledge-making. Here, by centering disability experiences, I argue for a materialist disability bioethics based in a cybernetic conception of disability that attends to the ways that bodies are produced and facilitated through the institutions and infrastructures that make everyday life possible. Such a position draws strength from critiques born of crip technoscience’s approaches to disability justice (Andrews et al. 2021; Mingus 2017; Piepzna-Samarasinha 2018) that situate the critique of technologies—and medicine and medical technologies foremost among them—as central to debates about “rehabilitation, immunology, and mental disability…[as] central to how we imagine accessible futures” (Hamraie and Fritsch 2019, 17). Bioethics can serve as a form of disability-informed advocacy that forwards livable lives as a goal of building accessible futures, which I argue can be grounded in a cybernetic approach to bodies and the environments they exist within (Wolf-Meyer 2020b, 2024).

Increasingly, disability-based critiques of bioethics are emerging as attempts to unsettle the normative and exclusionary frameworks that explicitly and implicitly shape bioethical practice and inquiry (Garland-Thomson 2017; Scully 2019; Stramondo 2016). The three areas that these critiques tend to fall into are focused on concerns regarding “quality of life,” eugenics, and accessibility. Disability scholars have pointed out how normative concerns with “quality of life” reinforce ideas about able-bodiedness as the default; anything less than “full” personhood as based in unimpaired mobility, senses, and cognition leads to claims of an erosion of “quality of life” (Arstein-Kerslake 2021; Kittay and Carlson 2010). The normative bioethical question that emerges in this framework is, At what point does an individual’s quality of life erode to the point of making a life not worth living? Individual iterations of this question are generally answered through recourse to utilitarianism grounded in ableist conceptions of what kinds of living are valued (e.g., Caplan 2014; Damasio 2010). By extension, some bioethicists have tended toward accepting lowered quality of life as impinging upon the families of disabled persons—and society as a whole—leading to arguments about whether or not disabled lives are “human” lives at all (see Peter Singer’s statements in Kittay 2009).

These ableist positions build on a history of eugenic thinking in bioethics, which has intensified in relation to emergent technologies focused on genomics and detectable impairments in utero. Parents with fetuses that demonstrate a likelihood of a disability are put into the position of deciding whether to carry a potentially impaired child to term and then to parent them. This status of “moral pioneer” (Rapp 1988, 1999) is held in tension with perspectives from disability communities that posit genetic screening and the termination of fetuses with disabilities as tantamount to genocide (Taussig et al. 2003); terminating the pregnancy of a fetus that has a demonstrable, immanently life-threatening impairment (e.g., hydroencephaly) is quite different than deafness or Down syndrome, both of which are forms of impairment that do not pose immediate threats to life expectancy. Bioethics that support the termination of pregnancies based on conceptions of societal “burdens” and quality of life tend toward this eugenic position.

Most recently, a turn toward questions of accessibility has resituated concerns about quality of life: if a community or space is attuned toward inclusivity—e.g., there are curb cuts to allow mobility—a person’s quality of life can be dramatically improved (Titchkosky 2011). Rather than targeting interventions on an individual person’s life in an effort to improve medical outcomes, an attention to accessibility demonstrates how a societal commitment to ensuring that different experiences of everyday life can be facilitated in material ways leads to positive individual and community outcomes; accessibility supports “disabled” people and people across the life course as they incorporate bodily changes that occur alongside aging (Hendren 2020). In addition to supporting those in advanced age, attention to accessibility also provides support for children as they learn to navigate the world.

Feminist bioethicists have directed attention to how “prototypes” of disability have shaped debates within philosophy and bioethics, often leading to generalizations that obscure the idiosyncratic experiences of disabled people and their families. In her work on the “faces” of intellectual disability, Licia Carlson (2010) points to the ways that the “face of suffering” serves as a vehicle for bioethical decision-making about disability in the abstract. The “face of suffering” utilizes “prototypes” that rely on generalizations so that the everyday experiences and possibilities for an actual person are subsumed in the philosophical imaginary of what their lives could be like at their worst; for example, in philosophical and bioethical debates about prenatal testing and the abortion of fetuses that test positive for trisomi-21 (Down syndrome), the figure of the “suffering” individual with trisomi-21 is used to justify moral stands that rationalize abortion. This use of prototypes imagines that all experiences of a disability are similar and largely negative. In his critique of the use of suffering in this way, Pekka Louhiala draws on his experience as a pediatrician to argue that “if a subgroup or an individual can be shown to have a markedly low quality of life, we must be careful with conclusions about causality, since the low quality may not be a necessary consequence of [intellectual disability] but of environmental origin” (2004, 116). In prototyping experiences of disability and ignoring environmental contexts, the “suffering” of a disabled individual is imagined as an intrinsic, physiological quality by bioethicists—which aligns with the medical model of disability—and bioethicists justify abortions of potentially impaired fetuses based on their assumption that the failure of medicine to cure any given disability leads to the ongoing suffering of those diagnosed with the condition.¹ Instead, attention to the lived experiences of disabled people and their families demonstrate how their “suffering”—as Louhiala hints at—is a result of structural problems that they confront in their need for the provision of care. The use of a prototypic “face of suffering” obscures these systemic problems in favor of isolating disability as an individual problem to be solved.

Through prototypic approaches, normative bioethics compounds exclusion and marginalization for disabled people and their families. This reliance on prototypes is especially challenging when normative bioethical positions are ableist in ways that are unmarked and pass without notice for many able-bodied bioethicists (Wieseler 2020). Because bioethics finds its roots in moral philosophies that were largely developed by able-bodied, white European and American men (Simplican 2015), assumptions about able-bodiedness, whiteness, and patriarchy are deeply embedded in bioethical traditions, which can be expressed in ideas about labor and productivity, the experience of being unmarked by racialized and sexualized categories in society, being largely exempt from institutional scrutiny, and the experiences of gendered roles of labor in and out of the family; for disabled people, none of these elements go without notice, as basic assumptions about labor and social unmarkedness are immediately brought into tension with experiences of bodies that are impaired in ways that make some kinds of work challenging and the gaze of able-bodied people part of everyday life (Garland Thomson 1996).

In these ways, disability is always a compounded experience (Frederick and Shifer 2019; Raghuram 2019). From an initial impairment, people are disabled in classrooms and workplaces—and in families and clinics—in ways that additionally disadvantage them, as Louhiala suggests above. They are confronted with intrusive questions and curious gazes. They are foreclosed from easy participation in social events and ignored in institutional design and practice (Hamraie 2017). When bioethics compounds intersectional marginalization, it leads to further harm and marginalization, in and out of clinical spaces; bioethical intervention as a form of advocacy might serve to defray these exclusions.

In the following, I focus on two contributions that disability studies makes to bioethical praxis. The first is an engagement with the category of disability, which draws on contributions from scholars across the social sciences and humanities. The second is attention to the non-unitary experience of disability, drawn from disability memoirs of neurodivergence. In both cases, what disability provides for bioethics is more than a neutral thought experiment: both the category and experience of disability disrupt normative assumptions about bodies, experience, and institutions with attention to how the moral authority of bioethics can expand the possibilities of human experience in ways that support disabled people and their families. These examples also, importantly, ground bioethics in more inclusive traditions that work against ableism and its effects. Throughout the perspectives that I draw on, I am invested in how materialist feminist science and technology studies can be used to expose how institutions and infrastructures make embodied experiences legible and how a commitment to the material situations of everyday life can create more inclusive social formations that support a wider variety of human experience. In committing to this materialist position, I work against the idealist forms of bioethics that are often detached from the affective qualities of human connections and that treat medical and scientific quandaries as abstract problems to be solved (Kittay 2009; Wolf-Meyer 2020a). Bioethical problems are always matters of life and death as well as matters of relations and connection; addressing how relations and connections are made and sustained through institutions and infrastructures necessarily demands an attention to the material constraints on our everyday lives that a cybernetic approach to disability helps mobilize.

Normativity and the Category of Disability

In the practice of medicine, the normal and the normative inform each other. “Normative” ethics and medical practice are based on standards and expected outcomes, providing healthcare providers and bioethicists a framework for their decision-making. Those standards, however, are based on normal and abnormal bodies and “typical” outcomes based upon prior clinical experience and scientific literature. As the normal was defined through statistical reason, exceptional cases were produced as outliers by design (Hacking 1990; Porter 2011). As exceptions, normative practice cannot anticipate what likely outcomes might be; this leads, in some cases, to exceptional patients being treated as a “normal” patient would be—which includes when disabled people are compared against “typical” experiences of already-exceptional ways of being in the world, including, as I discuss below, autism. In this way, there can be expectations about what “normal” autism presents as and how it should be addressed clinically, even when, individually, healthcare providers accept that each person will have a specific experience based on that person’s cluster of physiological capacities, social and environmental contexts, and access to healthcare and other care-providing institutions and persons. Normative expectations and the practices they enable implicitly reinforce ideas about normalcy and how normalcy can be achieved through adherence to normative standards despite the acceptance that becoming normal is impossible, both because of its slippery nature (i.e., who is actually “normal” in all ways? [Davis 2002]) and because individual circumstances will never accord with the realization of normalcy. Because normative standards of practice and the bioethics they inform are based on aggregates of data that favor the population of patients that fall into the significant bell curve that defines the “normal” (Davis 1995), the result can be that atypical experiences—of clinicians and patients—are treated as exceptional and unworthy of close scrutiny due to their unlikeliness of reproducibility. Instead, these idiosyncratic cases might be positioned at the center of bioethical practice, exposing how the normal and normative operate within medical and everyday practice.

Beyond medical contexts, the usage of the “normative” in philosophy and disability studies tends to diverge, where philosophers associate normative actions with what the “right” action is and disability studies scholars tend to associated the normative with the institutionalized impulse toward creating particular kinds of subjects and behaviors. On one level, this is a variation in technical language; on another level, the disability studies’ usage of “normative” is intended to unsettle philosophical usage of the “normative.” Rightness, oughtness, and shouldness—which are intrinsic qualities of normative behavior from a philosophic perspective—are all indebted in their everyday enactment to norms in a society, which are often grounded in conceptions of the normal and abnormal (Kittay and Carlson 2010). Moral philosophy does not exist outside of its social context, but reproduces it (Faubion 2011; Keane 2015); claims to philosophical exceptionalism, wherein a decision can be made outside of the social context of everyday life, are an enactment of the “god-trick” of objectivity and obscure how situated philosophers are in their social milieu (Haraway 1997). The employment of “normative” in disability studies is often a critique of dominant institutional forms and practices that compel individuals to behave and comport in specific ways—or risk being treated as abnormal, which ranges from being disabled to criminal (Ben-Moshe 2011; Kafer 2013; McRuer 2006). To invoke the normative in the context of disability bioethics is to gesture to this double meaning and to recompose philosophical bioethics through an engagement with disability and its critique of how normalcy is weaponized through seemingly neutral discourses—such a bioethics—and work toward unraveling these discourses’ cultural underpinnings.

Disability scholars make a critical distinction between disability and impairment (Shakespeare 2010; Sterne 2021) that works to decenter medical expertise as the basis of bioethics. “Impairments” are marked by an inability to do something based upon physiological conditions and their environmental situation and are rooted in material forms of exclusion; a motor control impairment might lead to a speech disability, or an auditory impairment might lead to a signal processing disorder or deafness. Medical interventions might seek to create or repair impaired capacities through surgery, prosthetics, pharmaceuticals, or occupational and physical therapy (Wolf-Meyer 2014), which leads to the “medical model of disability,” in which disability is cast as being able to be cured—yet not all impairments can be cured, and even those that might be resolved through medical intervention may still leave individuals different than their able-bodied peers (Clare 2017). For example, cochlear implants might “cure” deafness, but the hearing of cochlear implant recipients approximates “normal” hearing (Friedner 2022; Mills 2011). Thus, impairments become disabilities in the context of social norms. Deafness, in a community that widely uses gestural speech, American Sign Language or otherwise, is not a disability, as it has social support to facilitate communication for people with atypical hearing. This has been the case, even recently, in places such as Martha’s Vineyard (Groce 1988), where hereditary deafness has been common. Normative expectations about bodies and their capacities move impairments into the realm of disability, which serves to expose these expectations and their normative basis, particularly as expressed in material infrastructures of everyday life. Again, in the case of deafness, communicative norms that are based on unimpaired speech and hearing expose both the general expectation of fluent speech and full hearing, which has bearing on speech impediments such as lisps and stutters as well as nonnormative forms of speech such as African American Vernacular English and accented speech (Dumas 2012). Atypical speakers, whatever the basis of their variance from “normal” speech, are subject to forms of exclusion and bias that are rooted in or consonant with ableist assumptions about bodies.

As a means to counteract deeply rooted forms of institutional exclusion, disability scholars point to disability’s ubiquity (Davis 2002; Ginsburg and Rapp 2013; Kafer 2013). As a category, disability is one that everyone living will fall into over time, through disease or aging. For some people, disability is a transitory and acute condition; for others, it is a lifelong experience. Cross-culturally and historically, the category of disability changes alongside normative expectations as a response to social conditions, and what is accepted as a disability in one moment might not be in another historical moment given changing norms, medicine, and technologies (Ingstad and Whyte 1995; Snyder and Mitchell 2006). This variability in the understanding of an impairment as a disability can lead to forms of exclusion associated with disabilities varying, sometimes in direct counterpoint to the availability of accepted treatments. As medical treatments become more available, disability can be interpreted as a choice—as in the refusal of Deaf people to accept cochlear implants (Mauldin 2016) or the refusal of parents with children diagnosed as autistic to support their treatment with applied behavior analysis, which some parents and autism activists characterize as dehumanizing (Suskind 2014). Because of disability’s exceptional status in relationship to the normal, it exists in the paradoxical position of being both intensely scrutinized and widely ignored (Wolf-Meyer and Friedner 2022); its ubiquity is revealed when disability interrupts the life of an individual or family and otherwise disability is ignored or suppressed. This eruption of disability can lead to “narcissistic shock” (Rapp and Ginsburg 2001), as individuals and families confront their beliefs about able-bodiedness. Disability’s appearance in these ways is dependent on its exclusion, concretized in assumptions that disability—and impairment—exist within specific bodies rather than as effects of the material situations of everyday life.

If the traditional medical model of disability placed disability in bodies, and the social model of disability situated it as a function of the interaction between impaired bodies and specific environments, disability as a cybernetic experience draws attention to how the interactions between bodies, dominant ideologies of disability and ability, and social environments create feedback systems that compound experiences of disability while also attending to the ways that micro-interactions between individuals and their caregivers, environments, and technologies facilitate participation in social life (Wolf-Meyer 2020b). Such a conception of disability points to how all humans are impaired in small and large ways and benefit from the facilitation that is provided by those we interact with, the environments we exist within, and the technologies we employ to interact in “normal” ways. Some individuals may depend upon more intensive forms of facilitation (Kulick and Rydstrom 2015), but we are all facilitated all the time. Rather than being discrete individuals, we are always composed through complex interactions between bodies, institutions, and infrastructures. Attending to our interactional interdependencies and affective relations provides an inclusive grounding for bioethics that moves beyond disability’s exceptionality and marginality and accepts that we are all disabled in specific ways and benefit from the support of others and the material environments that we have created for ourselves as individuals and communities (Davis 2002; Dokumaci 2023). Bioethical attention can then focus on where and how facilitations occur—and how they might be better attuned to the desires and needs of disabled individuals and their communities.

This cybernetic model of disability is rooted in feminist materialism, particularly as it has been adopted in science and technology studies. Drawing inspiration from Gregory Bateson’s (2000) social cybernetics, which sought to describe the complex social, environmental, and technological interactions that bodies have and their epiphenomenal production of “mind,” Donna Haraway (1991) used the “material semiotic” to capture how bodily experiences are shaped by diagnostic categories, discursive regimes, and everyday speech. Haraway’s approach echoed the Spinozist philosophical work of Genevieve Lloyd and Moira Gatens (Gatens and Lloyd 1999;Gatens 1996), which argued for conceptualizing bodies as produced through their social and environmental interactions. Bateson asks readers to “consider a blind man with a stick. Where does the blind man’s self begin? At the tip of the stick? At the handle of the stick? Or at some point halfway up the stick? These questions are nonsense, because the stick is a pathway along which differences are transmitted under transformation, so that to draw a delimiting line across this pathway is to cut off a part of the systemic circuit which determines the blind man’s locomotion” (2000, 319). In this parable, Bateson suggests that the body as it tends to be conceptualized is compartmentalized in ways that chafe against its lived experience, especially in relation to the technologies that extend our bodies into their environments. Cutting our bodies at the perimeter of the skin belies how dependent they are on the technologies that make everyday life possible, and the invocation of a blind man and his walking stick brings this prosthetic dependency into relief (Forlano and Glabau 2024; Felt 2019; Hendren 2020).

Where Bateson’s use of disability is as parable, disability bioethics mobilizes actual experiences of disabled people to make the material situations and consequences of their impairments evident and subject to the elaboration of ethical problems (Belser 2016; Kudlick 2005). In so doing, disability experiences unsettle the ideal type that Bateson employs and demonstrate the complexities of narrowly defining the body as bound by the skin; instead, a properly materialist disability bioethics provides the conceptual tools to describe the interactions between bodies, technologies, environments, and norms—as embedded in institutions, policies, and practices—and the necessity for treating bioethical problems as necessarily idiosyncratic ones that compel finding solutions that move beyond medical problems as narrowly defined as problems of the body. In this context, disability bioethics serves as a site for creating connections between bioethical practice, science and technology studies, and the social study of medicine, all of which have complementary tools for describing the experience of disability and how its material conditions produce sites of tension, conflict, and marginalization.

Centering the category of disability as the philosophical basis of bioethics has the potential to align bioethics more closely with the lived realities of all people, disabled and not. Functionally, this means beginning with questions about how bodies are being facilitated or impeded and how these challenges might be addressed. This attention to facilitation requires moving beyond the strict category of disability as it is applied to specific bodies in specific contexts and moving toward an understanding that bioethics can serve as a form of advocacy that does not attempt to weigh in on which lives are worth living, but argues for making lives livable based on attention to the interdependencies that all humans have on their social others, technologies, and environments. It is less a matter of whether a person is disabled than how a person is made disabled by situational conditions and what might be done to mitigate this experience for an individual and their immediate network of kin and caregivers as a form of structural justice-seeking (Young 2011). Answering this question of disability-making inevitably requires addressing the overlapping qualities of physiological capacity, environmental and social facilitation, and normative expectations. Each case will be idiosyncratic and based on the situation of a given individual, but experiences may resonate in their relation to set categories of disability and their material infrastructures and discursive regimes—to the degree that they can be treated as separable elements (Friedner 2022; Larkin 2013; Velho 2021). In this respect, attending to how people diagnosed with autism create communication infrastructures through their idiosyncratic use of language is illuminating of how bioethical attention to individual disability experiences might provide the foundation for more expansive forms of advocacy.

The Nonnormative Basis of Disability Experience

Memoirs written by disabled people and their family members point to how categories of disability exist along a spectrum of possibilities. Autism is modal here, where its spectral nature is encoded in its category (Eyal 2010; Grinker 2008; Yergeau 2017); while the category of autism collects a set of demonstrable and shared experiences—self-soothing, avoidance of or discomfort with social interactions, affective differences from neurotypical individuals—the expression of these “symptoms” varies considerably, making no two autistic people exactly alike in their experience of autism (Fein 2020). Similarly, treatments of autism vary in their success at achieving outcomes aligned with behavioral norms. As a category, autism is useful to the extent that it provides individuals, families, healthcare providers, and other authorities with a framework for the care of a person diagnosed with autism—especially state-based care of individuals and their families (Silverman 2013). But, on an everyday basis, the category of autism is less important than the practices that aid an individual and their community in maintaining a life that is livable and free of the frictions that impede an individual and their interdependencies. I discuss three of the cases presented here in more depth in Unraveling (Wolf-Meyer 2020b)—the Karasiks, the Suskinds, and the Goddards—and put them into conversation with a fourth case here to draw out distinctions between the experiences of whiteness and disability (Bell 2012) and that of a Black-identified person diagnosed with autism, Anand Prahlad. Intersectional engagements with disability require attention to how racism and ableism compound experiences of marginalization, which can be hard to apprehend when either is situated outside of analysis. Comparing cases helps to surface these overlapping influences in institutional and everyday experiences and how they impede individual access to facilitation.

Lived experience of disabilities and their outcomes differ based on social context (Stenning 2024), as is well demonstrated in the family memoirs written by Ron Suskind (2014) and Judy and Paul Karasik (2003). In both cases, children diagnosed with nonverbal autism at an early age benefited from their interactions with televisions, which provided them with scripts to memorize and perform. Drawing on the television programming he watched in the 1950s and 1960s, David Karasik was able to extrapolate from the situations that characters on television find themselves in and was able to discuss his life with his family in ways that employed analogy; his anxiety about a family wedding reminded him of a plot from a Superman television show, which he was able to share with his sister Judy. Knowing the same show, Judy acknowledged David’s discomfort and allayed it. Throughout his adulthood, David was homed at a series of residential care facilities, which addressed his desires and needs differentially. When they failed to meet his needs and desires, he lashed out at himself and proved difficult for staff to manage. Lacking a shared framework provided by the television shows he watched, he was unable to communicate to his family the challenges he faced. These challenges were compounded by his access to technology: born in the early twentieth century, David lacked access to VCRs and DVD players that would allow him to replay speech acts in ways that he could gradually learn to acquire them.

This technological means is something that Owen Suskind had access to in the 1990s, and it allowed him to learn everyday forms of speech that were accepted by the people in his social world and that made sense in non-analogic contexts. Owen’s family raised him with steady access to Disney films on VHS, and in his childhood he replayed scenes with a focus on specific linguistic interactions. Enacting the scripted interactions and improvising interactions based on characters from the films allowed Owen to work through whatever was impeding his ability to communicate. He slowly acquired a repertoire of phrases that allowed him to communicate with his family, healthcare providers, and educators, as well as growing confidence in his ability to communicate in socially accepted ways. As a young adult, Owen graduated from a two-year college program and learned to live independently, which David was never able to do.

Although there may be physiological differences in Owen’s and David’s capacities for communication, what distinguishes their experiential difference is the breadth of social facilitation they receive from their families, caregivers, and the staff at the institutions they interact with, as well as their access to specific media technologies. In both cases, the form of media consumption they utilize is not recognized as an authorized form of therapy for autism or communication disorders. Instead, the familial acceptance of Owen’s and David’s uses of technology in the ways that they employ it provides a space for each of them to develop communicative forms that are idiosyncratic yet share structural similarities. Their outcomes are unpredictable, but normative expectations of speech acquisition—which often cast media consumption as problematic (e.g., Zimmerman et al. 2007)—would have advised against their exposure to as much television as they consumed. In fact, when discussing Owen’s seemingly miraculous use of language with a physician, his parents were told it is meaningless echolalia. Attending to how the children and their families use media provides a means to attend to the novel forms of facilitation that their families use and supports their continued success in the face of ableist biases as concretized in institutional practice.

First-person accounts of autism point to similar issues with nonnormative forms of communication. In The Secret Life of a Black Aspie, Anand Prahlad (2017) details his experiences as a Black and disabled person who experiences synesthesia as part of his autism. While he communicates in typical ways—he is a poet and memoirist by profession—his experience of the world and language is significantly different than those around him. As people communicate to him in speech, his experiences of those communicative acts evoke sensory experiences that are tactile and visual. In turn, central to his work as a memoirist is attempting to convey these nonnormative sensory experiences to his reader to demonstrate the lived differences that are foundational to his communicative and everyday experiences. Prahlad exists in a structural position of multiple marginalization as both Black and disabled, and while these intersectional points might be addressed by an attentive healthcare provider, his subjective experience of language, communication, and human interaction will always be deeply particular to him as a person. He describes his communicating interactions like this: “People talk to me and they assume I’m hearing and understanding their words. But usually I’m listening to their colors. I’m seeing them. I’m feeling their temperatures. I’m smelling their scents. And whatever I see or smell or touch, I taste” (2017, 5). This idiosyncratic experience of language means that any attempt to normalize Prahlad will inevitably run against the specificity of his experiences, which can never be made “normal” and must be responded to in their particularities.

Similarly, Peyton Goddard’s account of her experience with autism is conveyed through poetry that is enabled by the facilitation of her caregivers, who support her arm while she types on an assistive keyboard. For her immediate friends and family, Goddard’s keyboard speaks her writing aloud, making her able to communicate her everyday needs and desires. But she also maintains a blog where she posts lightly edited verse that she writes with assistance. For example,

I write

ready for whetting thesis that

reared worth-reported-nurtured-net-zero cherubs wired differently

will try and try to bystanders please,

yet years and years understaters see them as beasts

until their certain withered selfs are potently puny

and rest they pray urges them

to stop treading tear-filled waters and give up. (Goddard 2012)

As communication, Goddard’s writing does not abide by typical modes of information transference or transparency in meaning; attending to her needs and desires demands caregivers to know her intimately and work with her to translate her writing as mediated by her keyboard into actionable communication. Moreover, Goddard is not a straightforward example of a person diagnosed with autism. In addition to autism, Goddard has been diagnosed with motor control issues, fixates on complex behaviors (like picking up all the lint and dust bunnies in a room), does not seem particularly perturbed by most sensory experiences, likes touching others and being touched, and is intensely social. She experiences frequent, long-term insomnia, manic and depressive periods, obsessive-compulsive disorder, attention deficits, and epilepsy. As a patient, she exceeds typical understandings of autism and requires attentive care based on her idiosyncrasies, which her memoir attests to for readers.

With regard to these diverse experiences of autism, there is no “universal” treatment that can lead to specific outcomes, nor can blanket forms of accommodations be mandated to ensure that everyone has the same outcomes. The reality that each experience of a disability category is unitary and idiosyncratic points toward the need for bioethics to resist normative arguments in favor of addressing the expressed needs and desires for individuals and their facilitation given specific social and material environments. These caring environments can be based upon a breadth approach to the expressions of a disability where the bioethical—in partnership with insights from the social sciences, humanities, and disability activism—can advocate for a variety of practices to support disabled people and their families rather than one, normative standard and expected outcome. In this way, the bioethical becomes less based in normative expectations about disability and normalcy and more committed to the lived experience of disability in ways that acknowledge that disability and impairment are always a challenge to the normative because of their material situations and consequences.

Conclusion: Idiosyncratic Ethics

Disability serves as an impetus for changing bioethical praxis in substantive ways. Bioethics and bioethicists have been critiqued by disability-focused scholars for being unable or unwilling to address disability and the ways that bioethics, medicine, and scientific practice have compounded the marginalization of disabled people. Rather that perpetuate these marginalizations, bioethics stands to improve the lives of disabled people and their networks of care by deploying the moral authority of bioethics as a catalyst for institutional change. This commitment to improving the lives of disabled people and their networks of care depends on the willingness of bioethics practitioners to collaborate with disability experts and take seriously the idiosyncratic nature of disability experience; it also depends on a willingness to forgo the normative in favor of a conception of individual need and desire that is inherently singular. A crip technoscience-informed bioethics has the tools to build a formidable structure to support these claims and ground them in conceptions of life as interdependent, influenced by its material environment, and buoyed by interpersonal and technological facilitation, all of which is supported by medical and scientific practice. Ultimately, a more idiosyncratic and person-centered bioethics will require a reconceptualization of bioethics’ mission, moving from its role in the clinic, hospital, and laboratory as a mechanism to protect individual and institutional interests and toward a praxis that advocates for mechanisms to improve lives lived outside of those spaces.

The challenge, conceptually, that disability poses to bioethics given bioethics’ philosophical genealogies, is that disability is treated as exceptional or anterior to the normal (Canguilhem 1989). If moral philosophy has been informed by assumptions about the normal—both in terms of kinds of people and of what moral and ethical decision-making is meant to uphold—disability has been placed as an exception or interruption to the normal (Davis 1995). This exceptional status of disability is clear in the accounts of thinkers such as Peter Singer (2009) and Jeff McMahan (2005), who understand disability—and especially congenital impairments—as something that rarely occurs and exists at the margins of the foundational possibilities for human life. Structured in this way, decisions about people who exist in normative extremes uphold what the norm is—and in Singer’s and McMahan’s views, what the norm ought to be. Instead, accepting that disability is part and parcel of human life, and founding bioethics in disability as a category and set of experiences, provides a robust way to expand the conception of the normal and the mission of bioethics as a form of advocacy for livable lives by attending to the material situations of bodies and the institutions and infrastructures their everyday situations are made through.

These concerns about normalcy are the basis for significant critiques of bioethics and the reliance in some intellectual traditions on expectations of the “value” of individual lives, particularly in normative ethics. Inasmuch as Singer and McMahan have become the focus of attention for anti-ableist critiques of normative bioethics, they represent merely the public face of deeply held sentiments that are apparent in debates around genetic screening for disabilities, to name only one persistent area of debate. Since the 1990s, scholars have demonstrated how expectant parents are encouraged—and sometimes coerced—into prenatal screening. Despite most genetic markers being based on probabilities of specific outcomes, expectant parents are put into the position of needing to make decisions about the kind of child they might have and how it might impact their lives as caregivers. This position of “moral pioneer” is based on assumptions that most children will be born with the capacity to be “normal” and encourages parents to make decisions that uphold normative ideals about ability and disability (Rapp 1999). For example, because achondroplasia is a probability that genetic screening can demonstrate, many Little People activists have argued that prenatal counseling is a form of eugenics (Taussig et al. 2003), upholding norms about stature and size despite centuries of evidence that the lives of people with achondroplasia are not appreciably different than those without achondroplasia (Gollust et al. 2003). Whereas Singer and McMahan have elevated themselves to be targets of critique, the challenging reality of the everyday practice of medicine and the ethical issues that patients, their families, and healthcare providers face is predicated on the forms of ableism that uphold and are upheld through normative expectations that these stakeholders have. Even tempered language, as in the case of a recent multidisciplinary review of achondroplasia and its screening and outcomes, can implicitly uphold norms about “quality of life,” which implies less “quality” for people diagnosed with achondroplasia than normal people. For example, “Achondroplasia can also be associated with reduced quality of life due to functional impairments and psychosocial challenges and, in some individuals, the condition is associated with reduced life expectancy” (Savarirayan et al. 2022, 177). The promise of an antinormative bioethics is that it seeks to unsettle these expectations of normative practice and normal outcomes, substituting an acceptance that each patient and their experiences will be idiosyncratic—even when they might share qualities with other patients.

In accepting the non-unitary basis of disability, normative bioethics cedes ground to the bioethics of the idiosyncratic. The ethical, properly framed, is a response to a specific situation and the need to weigh outcomes for all of the participants in the situation (Badiou 2001). Ethical decision-making is always idiosyncratic; it becomes moral decision-making when it upholds norms that are situated in conceptions of the good. At some remove from the situations that disabled people and their families face, normative bioethics can embrace a level of abstraction that is dehumanizing (Carlson 2010). Attending to the lives of disabled persons and their families provides a clarity to bioethical advocacy that accords with the possibilities that individuals and families have available to them, particularly when these possibilities chafe against normative expectations of “quality of life” and the experience of any given disability category.

Additionally, attention to the lived experience of disability troubles the possibility of normative ethical claims as they apply to individual lives. That one experience of a disability is necessarily different from another and that both will vary over a life course means that ethical claims about an individual’s life—especially as they are captured in discourses about “quality of life” that seek objective measurements of life’s worth—are troubled at their foundation (Goering 2008; Wolf-Meyer 2020b). In disability’s idiosyncrasy, it provides a challenge to virtue ethics and its reliance on standards of action based in professional practice that often accepts “quality of life” as the basis for medical decision-making (Holland 2011; Oakley 2013). Because virtue ethics seeks to uphold norms through adherence to standards of practice and standards of practice originate in understandings of typical patients and their assumed outcomes through medical care, holding virtue-based positions in relation to idiosyncratic needs for care has the potential to set care providers at odds with the desires of specific people. In this way, adherence to virtuous decision-making can uphold professional standing while eroding the care of individuals. Professional virtue stands to obscure the need to attend to the idiosyncratic desires and needs of disabled people.

In counterpoint to virtue ethics, ethics of care approaches embrace the specificity of individual experience (Leget 2013; Ricoeur 1992), and provide the basis for conceptualizing what advocacy for disabled people might entail in their everyday lives. In her research on elder care in Chicago, Elana Buch (2013) points to the ways that caregivers are positioned to supplement the sensory impairments of aged clients of in-home care provision, serving as testers for potentially spoiled food and attending to intimate bodily care in ways that are specific to a person’s needs. Caring successfully for a person in these contexts depends on a caregiver’s attunement to the complex overlap of needs, desires, and impairments that a person embodies, as well as the caregiver’s recognition that standards of practice may obscure what is best for a particular individual; for example, a person may benefit from the occasional meal out of the house, but this depends on a caregiver transporting them and paying for the meal in contravention to institutionalized standards. Similarly, attention to the specific modes of communication that a person depends on—regardless of its typicality (Taylor 2008)—provides the foundation for social connections to be developed and maintained. Such care depends on an intimacy built between caregiver and recipient of care, which can place an undue and uncompensated burden on caregivers who feel compelled, due to their ethical commitments, to provide recipients of care with robust emotional support in addition to standard forms of care. Accounting for these burdens allows for the possibility of arranging more caring situations for care providers and recipients alike.

Attending to how disability-focused scholars have conceptualized the category of disability helps to demonstrate how central disability’s importance is to everyday life, the human life course, the organization of institutions, and the social settings of human interactions. Avoidance of disability in and beyond bioethics is purposeful in that it helps to maintain the possibility of exclusionary normative conceptions of health, well-being, and disease. But engaging with the category of disability shows how we all pass through or dwell within disability, and it is the work of ableist social norms to obscure that reality. Centering disability as a categorical impasse through which bioethics needs to move has the potential to shape bioethics and its conceptions of praxis, as well as changing how disability is conceptualized beyond its role in bioethics and the lives of disabled people.

A focus on the individual expression of disability and its situation within its social, environmental, and technological world helps to show how an individual is being disabled or facilitated and positions bioethical advocacy to make demands on actors and institutions in ways that can make a life more livable, both for a disabled person and their broader network of family, caregivers, and institutional actors. In this way, bioethics as a collaboration between disabled people, their communities, healthcare providers, social scientists, and humanities scholars can forward more inclusive models of livable lives with attention to the social and material supports that aid in the care for disabled persons. This advocacy work takes time, as all care does (Wolf-Meyer 2025), but the capitulation of bioethical decision-making to set policies accepts established norms as a means to govern the lives of diverse individuals. Doing bioethics from a disability perspective requires a commitment to the labor that care demands.

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Author Bio

Matthew Wolf-Meyer is a Professor of Science and Technology Studies at Rensselaer Polytechnic Institute in Troy, New York. He is a medical anthropologist and historian of medicine whose research focuses on the neuro- and psy- disciplines in the US.