The Disability Bioethics Reader

Joel Michael Reynolds, Christine Wieseler, Joel Michael Reynolds, Christine Wieseler

• Publisher: Routledge
• Year: 2022
• ISBN:
  9781000587210
• Edition: 1
• Topic: Philosophy
• Subtopic: Philosophy History & Theory

The Disability Bioethics Reader is the first introduction to the field of bioethics presented through the lens of critical disability studies and the philosophy of disability.

Introductory and advanced textbooks in bioethics focus almost entirely on issues that disproportionately affect disabled people and that centrally deal with becoming or being disabled. However, such textbooks typically omit critical philosophical reflection on disability. Directly addressing this omission, this volume includes 36 chapters, most appearing here for the first time, that cover key areas pertaining to disability bioethics, such as:

• 
  
  

• state-of-the-field analyses of modern medicine, bioethics, and disability theory
• health, disease, and the philosophy of medicine
• issues at the edge- and end-of-life, including physician-aid-in-dying, brain death, and minimally conscious states
• enhancement and biomedical technology
• invisible disabilities, chronic pain, and chronic illness
• implicit bias and epistemic injustice in health care
• disability, quality of life, and well-being
• race, disability, and healthcare justice
• connections between disability theory and aging, trans, and fat studies
• prenatal testing, abortion, and reproductive justice.

The Disability Bioethics Reader, unlike traditional bioethics textbooks, also engages with decades of empirical and theoretical scholarship in disability studies—scholarship that spans the social sciences and humanities—and gives serious consideration to the history of disability activism.

PART I History, Medicine, and Disability

1 A Short History Of Modern Medicine and Disability

Michael Rembis

DOI: 10.4324/9781003289487-3

People living in ancient Greece and Rome, medieval China, and the Western Hemisphere before the arrival of Columbus all developed ways of knowing and treating the things that ail most humans. In this chapter, I will consider the history of medicine, disability, and madness from the eighteenth century through the twenty-first century in the USA. During these years, medical knowledge and practice moved away from tradition and custom and people’s homes and storefronts to hospitals, clinics, laboratories, and universities. “Regular” or allopathic physicians in the, most of whom were white men until the mid-twentieth century, wrestled the authority to know and to treat away from homeopaths, midwives, and the local barber/surgeon and bonesetter. Home remedies and patent medicines, as well as more “heroic” treatments such as purging and bloodletting, gave way to the formalized, institutionalized, and increasingly inaccessible medical interventions familiar to most twenty-first-century observers. This transformation – the rise of modern medicine – took place slowly, over decades, and involved social and cultural battles and changing economic structures as much as it did scientific or technological breakthroughs or advancements in medical knowledge.

As the nineteenth century turned into the twentieth century, the regular physicians, or “regulars,” as they became known, worked to expand their purview and their power and control over what constituted medical knowledge and treatment. They formalized and institutionalized diagnostic labels and disability categories, and medicalized and pathologized what had been considered relatively rare, but not entirely uncommon misfortunes or human differences, such as physical ailments, epilepsy, blindness, deafness, and madness. New ways of knowing led to new ways of treating humans whom physicians increasingly classified as defective, deficient, deformed, insane, or disabled. Although many physicians resisted early twentieth-century eugenics, an equal, if not greater, number of them actively sought to eliminate “defective” humans through various medical procedures, including sterilization, institutionalization, and euthanasia. At the very least, physician-eugenicists sought to educate people to make “wise” reproductive choices. Although eugenics would persist, in altered forms, into the twenty-first century, after World War I, physicians increasingly sought to rehabilitate disabled Americans, to make them “normal” and able to “reenter” “normal” society. This combination of eugenics and the medical/rehabilitation model came to dominate thinking on disability and madness by the mid-twentieth century, and although it has faced opposition from the disability rights movement and the mad people’s movement, it remains a powerful force in the twenty-first century.

Modern medicine and disability share a troubled past. On the one hand, advancements in modern medicine such as vaccines, prosthetics, surgery, pharmaceuticals, and other technologies have helped disabled people in places like the USA live longer, healthier lives than at any other time in human history. On the other hand, disabled people have had to suffer the consequences of living medicalized, pathologized lives shaped by stigma, objectification, devaluation, and, in most cases, figurative or literal removal from society. Disabled and mad people have been forced to endure objectifying, permanently damaging, and in some cases lethal, medical experiments and treatments. Although a lot has changed in the wake of the social movements of the 1960s and 1970s, and the passage of the Americans with Disabilities Act (ADA) in 1990, disabled and mad people continue to be forced into second-class citizenship, characterized by exceedingly high rates of un- or underemployment, poor educational outcomes, and severe and persistent poverty, which is rooted at least in part in the idea that they are medical and biological misfits and liabilities. This chapter will trace the troubled history of modern medicine and disability in four parts, from the colonial period through the early twenty-first century.

I Early Healthcare, Colonial–1860

The roots of modern medicine did not take hold in the USA until the mid-nineteenth century. Before that time, colonial settlers, African slaves, and Native peoples relied on their own, often widely divergent, ways of tending to the sick, the injured, and the distracted or distressed. Among colonial settlers, a small group of well-educated white male physicians attempted to assert their professional authority in the late-colonial period, but they met resistance from their fellow colonists who increasingly looked upon any attempts to assert social authority or to obscure access to knowledge and information with suspicion. As the sociologist Paul Starr has noted, medicine remained “domestic” for almost 100 years between 1760 and 1860 (Starr 2017).

Throughout the colonial period and well into the nineteenth century, medicine was practiced in the home or on the plantation, usually by women, who were considered the primary caregivers within households. Some women, such as midwives, who possessed special knowledge and skills, extended their services beyond their own homes and families to their neighbors and communities. Women practitioners lived and worked among a broad range of male healers, surgeons, and druggists, who relied on everything from diet, exercise, water, and medicinal plants to poisonous minerals, purging, bloodletting, blistering, and prolonged restraint, to intervene in the lives of sick, disabled, and mad people.

Historical documents related to medical practice and disability or madness for the colonial and early national period are scant, but they suggest that people who survived smallpox and other diseases and became disabled, people who experienced disabling injuries, people who had sensory impairments, and people who were distracted or distressed lived within their communities as long as they were able to work or contribute in informal ways to the local economy, and were not considered violent. In many instances, class, race, gender, and social context were equally if not more important than embodiment in determining the lived experiences of disabled and mad people (Boster 2013; Groce 1985; Nielsen 2012). It appears that some disabled people, like the deaf community living on Martha’s Vineyard, thrived (Groce 1985). There is also evidence, however, that some disabled and mad people were shut away in cellars, confined to a single room, chained to walls and floors, denied adequate food, clothing, and shelter, and cast out of their communities.

Hospitals and insane asylums, as they were called, were rare during the colonial and early national period. Both hospitals and asylums, with the exception of a few private asylums, held poor or “indigent” people who did not have family, friends, or people in the community to care for them. One of the nation’s oldest hospitals, Bellevue Hospital in New York City, began in 1736 as an almshouse. Bellevue moved to its current location on Manhattan’s lower east side in 1795 (Oshinsky 2017). From the beginning, almshouses, hospitals, and asylums held disabled and mad people. The Pennsylvania Hospital, which was founded in 1752, was intended for the “reception and relief” of “Lunaticks” and other “distemper’d and sick Poor” residents of the province. The first asylum exclusively dedicated to holding “ideots, lunatics, and other persons of unsound minds” opened in Virginia in 1773 (Nielsen 2012). By the early 1840s, there were 21 public and private asylums scattered throughout 26 states. Although the numbers remained widely disputed, especially with respect to race, the 1840 census, the first to enumerate insanity, as well as other disabilities, counted between 8,272 and 17,181 “Insane and Idiotic” people among a total population of approximately 17 million – for a ratio of either one in 2,062 or one in every 900 Americans (Rembis forthcoming). It is safe to assume, based on anecdotal and other evidence, that many more Americans lived with physical and sensory disabilities and madness within their communities.

As the 1840 census indicates, the relationship between disability, madness, and medicine remained ill-defined during the decades between the founding of the nation and the outbreak of the Civil War. Ideas about disability and madness remained both complex and dynamic during the decades between the founding of the nation and the outbreak of the Civil War. Defenders of slavery, for example, created categories of madness which they assigned exclusively to enslaved people. Proponents of the slave system also argued that Black people living in the north suffered disproportionately from “insanity” and other ailments. Most people considered insanity a “brain disease.” Yet its causes remained a fluid mix of social and biological factors that always had their roots in dominant understandings of gender, race, and class. What twenty-first-century observers would call developmental or intellectual disabilities were similarly ill-defined during the early nineteenth century. Literacy varied widely by region and often depended upon one’s gender, race, and class. Compulsory education did not become widespread until the turn of the twentieth century and the classrooms that existed in the early nineteenth century were ungraded. What was legally referred to as mental “competency” was almost always defined by an individual’s ability to fulfill their social roles or work for wages. Though conditions such as epilepsy had been known for centuries, they were also not well understood. People living with what some twenty-first-century observers might call “seizure disorders” often found themselves incarcerated in asylums for the “insane.” Originally thought to be “dumb,” deaf and blind people became the focus of some educational reformers during the early nineteenth century. Yet it would take more than a century for them to achieve full citizenship, and during that time their experiences as disabled people would become increasingly medicalized. Finally, in an age before antibiotics and effective surgical techniques, many Americans lived with all sorts of undifferentiated physical disabilities that incapacitated them to varying degrees at numerous points throughout their lives.

More than anything, early nineteenth-century Americans seemed concerned with managing the consequences that disability and madness posed for families, communities, and the state. Disabled Revolutionary War veterans who applied for government pensions, for example, had their disabilities measured in terms of their capacity to conduct manual labor. Many disabled Revolutionary War veterans who received a pension continued to fulfill their role as husband, father, and head of household (Blackie 2014). After the Revolution, sensory impairments and “idiocy” increasingly became a matter of concern among educators, not medical practitioners. Blind, deaf, deaf/blind, and “idiots” who could afford it attended newly created residential schools and institutes, where they worked with teachers to build the knowledge and skills thought to be necessary to become productive and responsible citizens of the new nation. Some students fared well in these settings. They formed bonds, built careers, and created American Sign Language (Edwards 2012). Others returned home or were left to drift through society (Richards 2014). Some students remained residents at the schools for most if not all of their lives. In addition to those with intellectual or sensory impairments, people with physical ailments managed as well as they could on their own, or with the help of family and friends, to work and to fulfill other important familial and social roles.

Although their authority remained challenged and their ability to treat largely ineffective, regular physicians continued to try to consolidate their authority throughout the decades before the Civil War. In October1844, physician-administrators of asylums formed the first professional medical organization in the country. Thirteen prominent asylum superintendents came together in Philadelphia and formed the Association of Medical Superintendents of American Institutions for the Insane (AMSAII). Almost three years later, in May 1847, physicians formed the American Medical Association (AMA). Both organizations worked within a wide and diverse medical marketplace to establish standards in the credentialing of physicians and in the treatment of patients and asylum inmates. These regular physicians continued to face resistance, however, from an American public reluctant to accept their exclusive claim to medical knowledge and professional expertise. Women physicians, Thomsonians (followers of Samuel Thompson), homeopaths, osteopaths, water healers, housewives, and enslaved healers, among other practitioners, remained part of the American medical landscape, even as the number of hospitals and asylums, and the ranks of regular physicians, continued to grow.

The asylum system continued to expand, and communities continued to build hospitals and almshouses, but they were not looked upon by most Americans as places of refuge or healing. They were avoided, and, in most instances, used only as a last resort. The carnage of the Civil War combined with changing demographics and a growing industrial economy would significantly alter the relationship between medicine and disability in America.

II The Rise of the Regulars, 1860–1950

The most destructive military conflict in American history, the Civil War, increased the visibility of certain types of disability and hastened changes that were beginning to take place within medical practice during the 1840s and 1850s. The Union alone constructed 200 hospitals and treated more than one million patients by the war’s end in 1865 (Rosenberg 1995). Physicians performed 60,000 surgeries during the war, three-quarters of which were amputations. Nearly 10% of the war’s 476,000 wounded soldiers endured an amputation. Between 1861 and 1873, the federal government issued 150 patents for artificial limbs. It issued the first patent for a wheelchair in 1869. In addition to physical disabilities, the war produced mental distress in both combatants and noncombatants. Although all madness cannot be attributed to the war, the federal census showed a 100% increase in insanity from 1850 to 1870. By 1880, there were about 91,000 insane people in a population of 50 million, or one in every 554 Americans. The asylum system, like the hospital system, expanded significantly during and after the war. In 1880, there were about 41,000 people incarcerated in 75 public and 40 private asylums scattered across 38 states (Rembis forthcoming).

While the Civil War produced intense and relatively ra...