Disability
Nowhere is the concept of health humanities more filled with contradictions than when it considers the human variations we call disabilities. While we might think of disability as the antithesis or lack of ability, the concept is, in fact, a historical invention born in the nineteenth century. There were and are other ways of thinking about disability, and when it comes to conceiving of disability, the goals and practices of health and those of the humanities are, at times, divergent if not conflicting. The conflict is generative.
The aim of medical science is to convert human variations it classifies as disease, disability, or defect into a state it considers health. To do this, medical science sorts human variations into the categories of pathology or normalcy. Disease, disability, and defect are abstract categorical descriptions, interpretive taxonomies or templates fit over distinctive individuals to develop a clinical treatment plan. Modern Western medicine does this by pathologizing human differences (Hacking 1990; L. Davis 1995; Baynton 2016; Garland-Thomson 1996; Kafer 2013).
Over the last twenty years, the humanities have offered another way of understanding disability. One significant way of understanding disability differently through the humanities has been to identify and explicate cultural narratives of human variation. The humanities go beyond social constructivist theories of disability by bringing the knowledge tools of narrative, rhetorical, and semiotic analysis to explicate the cultural work of representation. Cultural representation gives us the meaning-making systems that shape our understanding of disability and how we respond to it as individuals and communities. Medical and cultural understandings of disability have fundamentally different origins. Most professional health contexts view disability as a problem, an acute deviation from a norm. In contrast, disability studies in the humanities emerged from the disability rights movement’s framing of disability as a social problem.
The human variations we think of as disabilities have changed—semantically and narratively—in the English language since the mid-eighteenth century from understanding grounded in religious narratives toward those produced by medical science, such as the shift from descriptions like lame and halt to diagnostic categories such as quadriplegia and multiple sclerosis. These shifts, the humanities reveal, affect knowledge making, institutional practice, and policy. Broad civil rights legislation in the second half of the twentieth century began a process of civil and human rights advocacy that changed the meaning of disability once more. Federal laws and policies, such as the 1964 Civil Rights Act, initiated a decades-long process of desegregating public spaces and the built environment through laws requiring that buildings and institutions be made accessible to people with disabilities. Policies such as the 1968 Architectural Barriers Act and the Individuals with Disabilities Education Act (IDEA) also worked to reimagine people with disabilities as citizens, providing equal access through provision of services and a newly accessible built environment. This transformation of the public sphere to accommodate people with disabilities culminated in the United States with the Americans with Disabilities Act (ADA) of 1990 and 2008. Of course, these policies and laws are aspirational and rely on implementation and enforcement, but they nonetheless lay out the reconceptualization of people with disabilities—a previously legally and politically unrecognized group now understood as a protected minority whose rights to equal treatment were historically denied. Through this series of laws and the changes they required, people with disabilities moved from being understood and treated as patients to being recognized as full citizens.
Still, the modern understanding of human bodies through medical science, which classifies people with disabilities largely as patients, works to relieve them of human differences we think of as disabilities. This follows a long history of medical science’s commitment to improving humanity. Nevertheless, limiting disability to a condition of health risks making it a eugenic target, marked for elimination from our human community. Eugenics was a worldwide initiative and a way of thinking understood as progress and technological development that aimed to make a better world, improve the species, and alleviate human suffering. Beginning in the late nineteenth century, eugenics proposed social and political policies to increase ideal and valued citizens while minimizing or eliminating people understood as defective. By the early twentieth century, eugenic ideology gave us involuntary confinement and sterilization almost everywhere in the world, and later, the Holocaust, which emanated from a totalitarian regime, committed to eliminating people considered defective from the national community (Stern 2015; Stern 2021; Friedlander 2000; A. Cohen 2016; Comfort 2018; Kevles 1995; Herzog 2018).
A humanistic, especially a narrative and historical, approach to eugenic thought and practice reveals eugenics is a narrative of human variation underpinned by the authority of objective measurement. Eugenic thinking began from newly ascendant practices and knowledges of measurement and calculation to justify shaping human communities through the modern technologies of medical science. Nevertheless, seeing eugenics as a narrative allows us to see it as one historically contingent choice—a choice to privilege certain ways of knowing and telling a story above others. In fact, we know that eugenics is a deeply historically specific way of narrating biological variation that, like what we think of now as disability, is a historically specific understanding of human life and being. Both in historical narratives of eugenics and in current eugenic and antieugenic narratives, we need to attentively search for what we now understand as disability and to recognize the relationship between the cultural narratives and semantics of human variation in the past and in the present. In other words, what we think of now as disability was present in the eugenics era, but it had not been inflected by the meanings and history that define the word disability now (Garland-Thomson 2020).
Expressed as a semantic and rhetorical transformation, the civil and human rights movements of the mid-twentieth century countered eugenic ideology and practice. This sociopolitical shift from eugenic logic to disability rights logic is a narrative of how the feebleminded, idiots, morons, insane, defectives, cripples, sick, weak, helpless, savages, barbarians, coloreds, aliens, foreigners, criminals, prisoners, homosexuals, work-shy, useless eaters, and all people whose lives were unworthy of life were transformed into people with disabilities, people of color, BIPOC, gays, transgendered people, economically disadvantaged, socially excluded, and other designations of dignity and equality.
If we seek to use the humanities to intervene in covertly and overtly eugenicist health narratives that continue to frame disability as a so-called problem for human health and flourishing that would be best eliminated, we could do no better than committing to disability bioethics (Garland-Thomson 2012). Bioethics is an applied field of study that grew out of a recognition that, following the Nazi regime and Holocaust, scientific research needed monitoring and revision, especially when informed by religious studies and ethics (see “Bioethics”). Disability bioethics begins from the idea that bodily diversity is good for a population—that is, that diverse abilities, bodies, and minds enrich the human experience and population and that, contra eugenics, they must be not only preserved but allowed to flourish. The project of disability bioethics is to bring the cultural history of the sociopolitical category disability to what has been until recently an altogether medicalized category. Along with the principles of assuring autonomy, avoiding harm, and supporting benefit that can be applied in medical and health-care practice, bioethics charges us with the more abstract aspiration to uphold justice. Justice invites us to consider the political promise of equality fundamental to modern liberal social orders. Disability bioethics challenges us to develop and practice a radical understanding of equality that recognizes body-minds considered disabled as equal in moral and social value to body-minds that meet the medical threshold of normal. Disability bioethics further challenges health care as an ideology and practice to provide medical treatment that will increase quality of life and remediate suffering without normalizing the human variations we think of as disabilities. This is an enormous and in many ways counterintuitive challenge that the health-care industry must continue to take up in this twenty-first-century era of recognizing and honoring disability as a form of human diversity and a sociopolitical identity category. Disability bioethics can thus counter eugenic ideologies that value human beings differentially. This bioethics of justice cultivates an attitude of humility toward human biodiversity in imagining another’s life and how any of us live. It requires health care to resist a notion of technological progress that continually categorizes human diversity in terms of diseases to be identified and eliminated. This narrow version of health regularizes human minds and bodies according to concepts of advantage or disadvantage, part of a commercially incentivized growth industry of pathological diagnosis and notions of individual liberty at the expense of the common good.
The health humanities should also encourage the idea of disability cultural competence. Developed as a curriculum and set of practices within health-care settings, disability cultural competence can be designed with the goal of implementing justice and autonomy. Achieving disability-competent care will require physicians, patients, and prospective patients to unlearn attitudes and assigned roles that interpret human variations we think of as disabilities primarily as diseases or departures from normalcy. Disability cultural competence is more closely related to structural competence than to current understandings of ethnic or racial cultural competence. This is because disability is a sociopolitical and cultural category that everyone, from patients to health-care workers themselves, can and will enter into sometime over a lifetime. Thus, knowledge of disability as a shared human experience is necessary for everyone. The cultural practices that underpin competence in disability culture are those that support diverse ways of human flourishing and civil and human rights–based understandings of disability encoded in legislation such as the ADA and broader initiatives such as the United Nations Treaty on the Rights of People with Disabilities, which aim to integrate people with disabilities as full citizens (Garland-Thomson and Iezzoni 2021).
Disability cultural competence identifies and develops supports for people living with disabilities without changing their lives to live according to others’ expectations. Its content includes (1) biomedical decision-making, (2) disability culture and history, (3) accessible technology and design, and (4) disability legislation and social justice. Its competencies draw from disability culture, arts, literature, history, design, technology, bioethics, and law to expand the medical and rehabilitation knowledges that now address living with disabilities. It promotes quality of life, dignity management and maintenance, access and accommodation requests, self-determination, resilience cultivation, relationship management, community and leadership building, and cultural proficiency for people living with disabilities and their families. It also promotes awareness about disability rights, disability protections, and the benefits of identifying as disabled—such as how to request accommodations in health-care settings and the provisions of the ADA and Genetic Information Nondiscrimination Act for health-care workers, patients, and future patients. Disability cultural competence benefits everyone. These competencies are grounded in the disability principles of nondiscrimination, full and effective participation of people with disabilities in society, respect for difference, and accessibility we find in disability principlism, epistemology, and critical theory (Ouellette 2011; Scully 2008; Garland-Thomson 2017).
Disability bioethics and disability cultural competence are just two examples of how the productive friction between medical and humanistic ideas of disability can generate new frameworks and orientations. Health humanists would benefit from such perspectives and knowledge that recognize the full potential of disability to produce more ethical, humane, and just ideas and practices in health and health care.