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Conserving disability and constructing a habitable world

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In Eichmann in Jerusalem: A Report on the Banality of Evil, Hannah Arendt concludes that political regimes ought not to determine “who should and who should not inhabit the world.” Thirty years later, biologist Ruth Hubbard again put forward the question of who our world should include in her critique of genetic testing that selects and marks foetuses with disabilities for possible abortion. Referring to what historians like Daniel Kevles call the new eugenics, Hubbard asserts that:

Scientists and physicians in this and other countries are once more engaged in developing the means to decide what lives are worth living and who should and should not inhabit the world.

Arendt’s and Hubbard’s ethical assertions address the central question that has long preoccupied me: Why should disabled people be in the world?

Worlds are spaces, complex material environments made up of people, the material artefacts we make and use, the geological habitat and other living things ranging from forests to viruses. Our lives occur in these spaces; how we think and what we do shapes them. Some of this environment is given, but we construct much of it through human will, action, and ideology. In other words, the shape of the shared material world we design, build, and use together both expresses and determines who inhabits it now and in the future, and how we use it to exercise the duties and privileges of belonging within that world.

Disability offers a good case study for investigating current and future world-building. Modern cultures are now undertaking two contradictory world-building initiatives that are expressed in social, legislative, material, cultural, and attitudinal practices.

Forms of world-building: inclusive and eugenic

One world-building initiative, which I call inclusive world-building, seeks to integrate people with disabilities into the public world by creating an accessible, barrier-free material environment. Inclusive world building considers disability as valued social diversity and supports the civil and human rights-based understanding of disability encoded in legislation, such as the Americans with Disabilities Act of 1990 and 2009 and broader initiatives such as the UN Convention on the Rights of Persons with Disabilities, which aim to integrate people with disabilities as full citizens.

In contrast to this inclusion initiative is the project I call eugenic world-building, which strives to eliminate disability and, along with it, people with disabilities from human communities and future worlds through varying social and material practices that range from seemingly benign to egregiously unethical. Such world-building seeks social improvement and freedom of choice by eliminating devalued human traits in the interest of reducing human suffering, increasing life quality and building a more desirable citizenry.

Eugenic world-building, in short, is the ideology and practice of controlling who reproduces, how they reproduce, and what they reproduce in the interest of shaping the composition of a particular population. The aim of eugenics is to rid society of the human characteristics that we consider disabilities in the broadest sense and, often by extension, of people with disabilities as well.

Modern liberal democratic orders, based as they are on an ethic of equality, enact structures and institutions that scrupulously protect against judgments among citizens about the value of one another and of our lives. This conservation of individual human distinctiveness and the concomitant right to express that individuality through living is the central principle of modern developed democratic orders.

The utilitarian or instrumental logic that establishes differential value among individuals is eugenic in its expression when it shapes a population according to those differential valuations. Eugenics uses modern technologies supposedly to improve the human race through selective reproduction, genetic manipulation, so-called enhancement, selective abortion and medical normalisation, all of which aim to eliminate disability.

Early eugenics gave the Western world an identified, sanctioned population enforced by compulsory sterilisation, the human classification of feebleminded, a vast archive of ostensibly inferior hereditary lines, mass institutionalisation of people judged as inferior, and the eugenic euthanasia project we call the Holocaust. Although today we have a network of egalitarian agreements that arose to guard against enterprises like the Holocaust, communities are now actively shaped by a velvet eugenics enacted through biomedical technologies that select and support some lives according to criteria assumed to be reasonable and incontrovertible.

World-building and the normate figure

Eugenic world-building depends on the imagined cultural figure I have termed the normate. Both the cultural image and the human version of the normate embody the form, function, behaviours, and appearances that conform to all of the culturally valued traits in the social systems of gender, race, class, sexuality, and ability.

The normate is medically and socially hypernormal, displaying the markers of that status and collecting resources and status from this embodied form of social capital. “The term normate,” I suggest, “usefully designates the social figure [through] which people can represent themselves as definitive human beings.” So narrow, however, is the range of traits that marks normate status that “only a minority of actual people” qualify.

In the 1960s, sociologist Erving Goffman gave shape to the normate by showing how actual people fell short of its standards. There is, Goffman wryly writes, “only one complete unblushing male in America: a young, married, white, urban, northern, heterosexual, Protestant father of college education, fully employed, of good complexion, weight and height, and a recent record in sports.” Goffman’s work in sociology suggests the way bodies seemingly naturally carry social capital in flesh, comportment, behaviour, appearance, position, and history along with the shame that the image of the normate invokes from those who feel they deviate from this phantom majority figure. The image of the normate that Goffman lays out is, to use Paul Longmore’s phrase, “severely able-bodied.”

As rare and unattainable as “complete” normate status is, such a character nevertheless has great cultural influence. We all recognise this figure; many of us aspire to achieve it; few attain it. Normate status is more aspirational than realised. Actual people seldom fully qualify as normates and, when they do, fall quickly from its fulfilment. Those who for a brief moment in time and space can conform to the normate’s static image assume the authority and wield the power that normate status grants until the human condition inevitably revokes it.

The normate figure serves the work of eugenic world building in several ways. First, it provides the bodily template of the ideal citizen, the imagined definitive person for whom the built environment is designed. Architecture and designers have traditionally focused on aesthetics rather than the actual use of buildings, thus tacitly assuming that the occupants of these spaces and the users of these products are normates. The development of universal design — in response to disability rights legislation and the emergence of feminist architectural criticism — offers an explicit critique of the implied normate user as an exclusionary concept. The more recent emergence of user-based design, or what might be called diversity of access architecture and design, has attended to how human physiological variation determines the ways in which the built environment is used and, thus, who it admits and who it excludes.

Second, the normate figure underwrites eugenic world-building in the broad, influential modern project of medical normalisation. The figure of the normate hovers behind the newborn citizen as an imagined potentiality. The promise of a newborn is that it will become a normate — that it will carry out an expected future enabled by normate embodiment. The largely unquestioned concept of beginning life as a “healthy baby” anchors the projected normate future understood as a right of citizenship. Much of the work of medical reproductive technology is to ensure this normate potentiality to all members at birth by controlling the development of human variation during gestation. Undervalued or stigmatised human variations understood broadly as “disabilities” or “disadvantages” are identified and marked for eugenic elimination in current reproductive management protocols aimed at producing newborns expected to carry out a normate future.

What is suppressed in the fictional future of the normate newborn is the inherent contingency of human embodiment as it moves through time and space in the journey we call life.

Kazuo Ishiguro’s disability reversals

The 2005 novel Never Let Me Go by Kazuo Ishiguro, together with its 2010 film adaptation, offers an opportunity to think through eugenic world-building by questioning the categorical distinction between normate status and disabled status. The novel’s rich blend of dystopian science fiction, literary naturalism, magical realism, and elegy pose significant moral and philosophical questions.

At the heart of Ishiguro’s novel is a subtle and complicated exploration of our psycho-emotional response to mortality, our own and that of our fellow humans. The aspect of mortality Never Let Me Go focuses on is how we — both as individuals and through social orders — address the inevitable transformations of human bodies as they move through time, space, and the material world in the course of our individual life trajectories. In this sense, then, the novel is about how we collectively respond to the human ways of being, perceiving, functioning, and responding that we call disabilities.

This unusual narrative route to disability is a futuristic practice of medical scientific cloning set in a quaint, mid-twentieth-century English village. There, a modest boarding school raises clones for eventual organ harvesting that increases life expectancy for the rest of the population. The human clones upon which his plot centres have been created to supply medical treatment for the inevitable disablement of the rest of the English population.

Certainly, Never Let Me Go concerns the ethical issues of cloning and organ-trafficking, but I focus here on what the novel has to say about the project of eliminating disability from the human condition. By creating a strange future world full of what we might call “disability reversals,” Never Let Me Go provides us an opportunity to think critically about the commonly accepted categories of healthy and sick, fit and unfit, worthy and unworthy, human and inhuman, normate and disabled that make up the ability/disability system.

Never Let Me Go comments on eugenic world-building, I suggest, by making it seem surreal, disorienting and thus newly apparent. This confusion of time and place and people asks questions that are central to disability ethics: What is disability? Who is disabled? Who is a normate? What is health? Who is healthy? Who are caregivers? Who are care receivers? Who serves whom? What is an open future? What is a quality life? What is a restricted life? What is freedom? What is self-determination? Perhaps most important, Never Let Me Go raises the central question of eugenics: Can disability be eliminated from the human condition? The answer Ishiguro’s novel gives us is, No.

The film version of Never Let Me Go begins with onscreen captions explaining that a medical breakthrough in 1952 has permitted the human lifespan to be extended beyond 100 years. Twenty-eight-year-old Kathy H. narrates both the film and novel as an elegiac account of her upbringing at an English boarding school called Hailsham, followed by her adult life as a so-called “carer.” Set in the late 1950s or early 1960s, the film places in a past era the not-yet achieved scientific practice of human cloning. Through a series of ominous introductory scenes, the film gradually reveals that the children at the idyllic yet unsettling Hailsham are imprisoned on the school grounds and that the alternate twentieth century of the film is both different from and similar to the one we share and recognize. Although Hailsham appears at first to be a typical boarding school, the futuristic medical procedures, high-security and suspicious secrecy that are part of the curriculum there eventually make clear that Hailsham’s mission is to promote and protect the health of the child clones created to become organ donors who, after multiple medical harvesting surgeries, will die in ritual procedure called “completing.”

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This unsettling world of futuristic enhancement procedures set in a quaint, provincial English village in the past at once confuses and compels. Never Let Me Go is no sci-fi thriller, however, but rather an elegy haunted with a melancholic longing for the lost innocence of the idyllic childhood lived at Hailsham, as well as the lost companions, friends, and lovers who have “completed” by the end of the story — as the narrator herself will soon do. The novel and film press us to consider who we let go, why we let them go, and how we let them go.

The program at this haunted English boarding school, we come to understand as the story unfolds, cultivates the so-called students’ well-bred beauty, intelligence, and their artistic, athletic and interpersonal qualities. This grim reversal of the accepted criteria for the fully human becomes poignantly apparent as we come to identify with the clones and against their caretaker/captors, who increasingly display a perverse efficiency reminiscent of Nazi eugenicists and death camp bureaucrats.

Our own melancholy develops as we realise that these talented, capable, and sensitive young people will die before they can fulfil the potential that their careful upbringing and natural gifts promise. Moreover, these sensitive, capable youths are resigned to their eventual fate, confinement and limitation, apparently accepting it all as inevitable. The lonely Kathy H. accedes to the duties of “carer,” which is a short reprieve from donation as she attends to donors whose organs are harvested until they eventually “complete” while still in the prime of youth and health.

The arc of the narrative forces them — and us — to realise that no matter how amply they demonstrate their humanity, their capabilities, and their valued qualities, there is no possibility of “deferral,” no reprieve from organ donation for clones. The predetermined fate — the absolutely closed future for the kinds of people we think of as having an absolutely open future — creates a quietly tragic memento mori to all of our fates.

By inverting the positions of normate and disabled, Never Let Me Go makes the world of the narrative strange, thus calling into question the reigning logic of our ordinary world. So, the suddenly confusing world of the story challenges several assumptions fundamental to the ability/disability system. Perhaps the most perplexing and therefore arresting of the story’s strange inversions is that the über-fit and healthy young Hailsham donor clones Kathy, Ruth, and Tommy — the main triangle of the story — are biologically fiercely able-bodied but socioculturally disabled in the disordered world of the story. In other words, they paradoxically possess normate embodiment and disabled status.

Normative assumptions of cultural discrimination

These reversals in Kazuo Ishiguro’s novel make apparent and challenge three interrelated assumptions about the lives of disabled people and the lives of normates that are transmitted and received through acculturation and circulated through attitudes and public discourse so as to seem sensible, true, and self-evident. The work of the broad disability rights movement has been to question these widely accepted premises and show how such narratives contribute to a culture of discrimination against people with disabilities. These assumptions are, perhaps, most harmful in that they underpin the eugenic logic of eliminating disability and people with disabilities from the world.

Meritocracy and social order

The first commonplace assumption about normate and disabled lives that Never Let Me Go challenges with its strange reversals is the belief that a meritocracy based on ability, physical and intellectual capital, and accomplishment structures the social order. This belief in a just universe, organised either by a higher power or Darwinian survival of the fittest, both blames and credits people for their status in the ability/disability system.

In this worldview, normate and disabled status seem to be deserved states of advantage or disadvantage. Normate status — according to the logic of meritocracy — is earned privilege, whereas disabled status, even when it is not understood as volitional, confers natural inferiority and indisputable biological disadvantage.

The Hailsham world initially appears to be a meritocracy, as any typical elite institution claims. However, the school turns out to be a perverse laboratory that first sets up and then reverses our understanding of a proper meritocracy. In fact, Hailsham is part of a system that reverses meritocracy’s logic by victimizing the healthy and fit — those who most closely approach normate status. Indeed, in the Hailsham world, neither achievement nor ability will redeem these deserving, accomplished donors from their ineluctable fate — from ending up at the very bottom of this social hierarchy, even while they possess all the bodily and intellectual capital that might put them at the top of the social order.

The Hailsham world turns around the fundamental premise of eugenic world building by sacrificing normates for the benefit of people with disabilities.

Lower quality of life

The second assumption about disabled people and normates that Never Let Me Go confounds is the conviction that the quality of life for people with disabilities is lower and that people with normate status enjoy a higher quality of life. The human variations we think of as disabilities are imagined to significantly reduce the quality of one’s life due to functional limitations, bodily conditions and/or physiological/psychological impairments. In other words, one’s bodily state is understood to be the source of life quality for people with disabilities and normates.

In the strange world of Never Let Me Go, however, the clone donors - who are bred, treated and nurtured from conception foreword to be hypernormates - have a substantially lower quality of life than the disabled recipients of their donations. Despite the fact that life at Hailsham is idyllic and amply provides basic life needs, such as good food, comfortable shelter, healthcare and sustaining interpersonal social networks, the clones are essentially orphans with no sustaining family structure or capacity to make decisions for their own lives. They lead restricted lives, segregated from the public sphere, and have no access to the rights or obligations of citizenship that the larger population of potential recipients or caretakers can exercise. A group from which they are excluded on the basis of physiological distinctions determines the shape and content of their lives.

The border between donors and recipients is absolute and structures the quality of life for both groups. In contrast, the citizen recipients of the clones’ donations, represented in the story by the Hailsham headmistress, have access to the resources and opportunities of full citizenship, social and geographical mobility, self-determination, and health decisions. Indeed, the fundamental premise of the narrative in which the healthy and fit clones are sacrificed for the benefit of disabled and unfit citizens reverses the traditional hierarchies of social value in which disabled people are taken to have lower quality of life and life chances, while nondisabled people are imagined to have higher quality of life and increased life opportunities.

Regardless of the clones’ embodied capital — their wide array of physical, appearance, and educational capital — they occupy a very low status position in the inverted order of Never Let Me Go. Their confinement and lack of agency to determine the course of their own lives isolates them completely from full members of the society. As adults, they don’t know how to interact with nonclones or to use public space in any way. In the film, they wander around the town, incompetently looking in windows trying to figure out how other people who seem like them act, interact, and use the larger the world of the village.

On the other hand, the supposedly disabled, who are the recipients of the clones’ biological capital, do not heavily bear the stigma of disability because their disabilities will supposedly be cured by the harvesting program that will deliver them back to normate status. Thus, those considered “fully human” in the world of Never Let Me Go will only ever be temporarily disabled. So even though the reigning majority will eventually transition into the category of disabled, the stigma of that status is relieved, or even removed, through the potential to shift back toward normate status as they literally take on the bodies of the clone donors.

The story’s dramatic scene of confrontation and revelation chillingly suggests that the wrong people are going to be “let go” in this inverted world where the nondisabled are confined and have limited life chances, while disabled people exercise mobility and longevity. This scene between the former students and their teachers presents the starkest confusions of disabled and normate. Kathy H. and her childhood friend at Hailsham and now lover, Tommy, seek out their old French teacher from Hailsham, whom they discover lives in a suggested Boston marriage with the former headmistress of the now-abandoned Hailsham. The visit between teachers and past students transforms into a revelation between donors and recipients.

In this scene of rewritten relationships and reversed hierarchies, the headmistress and French teacher, who were custodians of the students, have shifted to become the beneficiaries of the donor program they were charged to enforce at Hailsham. The school has long since closed, and both women have aged into the role of transplant recipients, suggested in the film by the former headmistress’s use of a wheelchair. In the novel, Ishiguro describes the aging headmistress as unrecognizably “frail and contorted,” and the film shows her as severe, diminished and frankly disabled. These aging, potential recipients of the young clone couple’s harvested vitality still retain the power to narrate the truths of the donation program’s grim, ineluctable process of completion. At the same time, these disabled and soon-to-be-disabled women must rely on the decidedly normate donors, Kathy and Tommy, to restore their status.

The scene’s poignancy arises from the entangled positions among normates and disabled, fit and unfit, healthy and unhealthy, givers and takers, donors and recipients, reapers and harvested, valued and devalued, worthy and unworthy.

Here the clones’ human status is revealed. Kathy and Tommy seem to understand themselves as fully human and to be naïvely requesting a reprieve based on their normate status. They believe and show the teachers that they can truly love and create art in hopes that this proof of their humanity will earn them an exception, a deferral. If they are exceptionally human, exceptionally normate, their potentiality can be realised. But full human status is not now, nor has it ever been, open to them in spite of their normate qualifications.

The headmistress, Ishiguro tells us, addresses Tommy and Kathy as “poor creatures,” alluding to Mary Shelley’s Frankenstein. The French teacher reveals to the couple that, despite the care and education they received, there have always been questions about whether these healthy human specimens were “properly human.” In fact, she goes on, “We’re all afraid of you. I myself had to fight back my dread of you almost every day I was at Hailsham ... I’d feel such revulsion ...” For all of their normate function, capability, and appearance, Kathy and Tommy are irrevocably repulsive.

Revulsion and fear are, of course, stock responses of the supposedly able-bodied to the supposedly disabled, the stereotypical figures of eugenic rhetoric. The headmistress and teacher steadfastly retain their position of superiority in this perverse quartet as benevolent caretakers of the “poor creatures.” The sacrifice of the carers, the donation of their labour for the benefit of the ungrateful and undeserving recipients of care, is another stock disability narrative that is both enforced and reversed in the narrative confusion of donors and recipients, worthy and unworthy, human and inhuman.

Lack of a future

The third and final assumption that Never Let Me Go challenges with its complex of reversals is that people with disabilities do not have an open future but that normate status assures a quality future for its bearers. In this strange world, the self-determination and open future of people with disabilities is secured by the closed future of the normate clones.

As Adrienne Asch and Erik Parens point out, life quality, opportunity, and advantage cannot be predicted for anyone in advance. The imagined open future of the normate and imagined closed future of the disabled arise from the cultural conviction that our bodies are tractable instruments of our individual and collective wills. A certain kind of body, modern acculturation tells us, will produce a certain kind of life. Our current eugenic reproductive initiatives rely on this fantasy of an open future that is understood to be secure in the ostensibly healthy and identifiably normate newborn that reproductive technologies and treatments intend to produce. But all humans are, in fact, born significantly disabled: mobility impaired, cognitively disabled, and nonverbal, so that their normate status is always a potentiality more than an actuality.

Nonetheless, an imagined trajectory of possibility accompanies the normate newborn whereas an imagined trajectory of restriction adheres to a newborn understood as disabled. Our accepted understandings of the human variations and transformations we think of as disabilities view disabled babies as interruptions or departures from a standard script of human form, function, behaviour or perception that is embodied in the normate. In truth, of course, even if normate status is at some point achieved, it cannot be sustained for long over a lifetime.

The final measured resolution scene in the film version of Never Let Me Go gives us Kathy after she’s abided through Tommy’s completion, knowing that her donations will begin in two weeks. Contemplating the ruins of her childhood, she asks whether her fate is really any different from the people who will receive her organs: after all, she reminds us “we all complete.” This universalisation of mortality and the vulnerability of our enfleshment resolves the opposing groups of donors versus recipients, carers versus cared for, and stigmatised versus normal.

This melancholy consolation highlights one of the conventional assumptions about disability: that the disabled life is one cut short, tragically compromised by the limitations disability imposes. This dominant cultural narrative of loss understood as early death grounds the logic for employing reproductive technologies such as selective abortion to prevent suffering and a supposedly reduced quality of life. Early death, then, is culturally associated with disabled people, while longevity seems a property of normates. The absolutely closed future of the normate clones in Ishiguro’s story, then, assures the imagined open future of the fully human, who will all become disabled eventually.

Inhabiting a shared world

A crucial challenge for critical disability studies is developing an argument for why disabled people should be in the world. The need for developing this anti-eugenic argument became clearer to me a few years ago while I was observing an Emory University seminar where an undergraduate student asked a plangent, yet representative, question after a class devoted to feminist disability theory. “What would I do,” she ardently implored, “if I had a kid with a disability?” This question reflects the dominant assumption that disability is a condition we need to do something about, while normate status is understood as a state that requires no adjustment to be made by the communities into which the new member enters.

Bioethicist Jackie Leach Scully identifies the ideological work of what I am calling “normate status” in this way: “Genetics now enables ‘something to be done’ about disability, and this demands clarity about the kind of something that is socially and ethically desirable.” The “something to be done” about disability in our present moment of intense medical technological development is to build actual people on the model of the normate. Such a phantom figure is not simply disability-free now and in the future. Normate potentiality seems impervious to shaping by the encounters with the world we perceive as life. The variant forms and functions we count as disabilities and abilities do not predict or determine, in any coherent or meaningful way, quality of life, human value, happiness, merit, achievement, virtue, contribution, or potential — in short, any of the criteria for evaluating a human life.

So the question of whether we want to be disabled or have disabled people in the world is the wrong question. The right question is: How can the disabled people in our shared world now and in future worlds inhabit those worlds effectively?

Who we include and how we collectively constitute and support human communities are perhaps the most crucial contemporary ethical concerns. My point is that we should conserve the human variations we think of as disabilities because they are essential, inevitable aspects of human being and because these lived experiences provide individuals and human communities with multiple opportunities for expression, creativity, resourcefulness, relationships, and flourishing.

The persistent forms of human biodiversity we consider “disabilities” witness sturdiness more than fragility, interdependence more than isolation. To live a nondisabled life does not secure these positive qualities, nor does living life as disabled preclude such beneficent prospects. In other words, it is not disability status or experience that determines quality of life, opportunity, happiness, or contribution to community. We are all made from flesh, blood, bone; this enfleshment sets the limits and possibilities of our existence. This shared humanity invites us to recognize what we gain from disability and what we lose when we exclude it from our shared world.

A conservationist approach toward human embodied existence recognises and honours our materiality by providing a sustaining environment that supports all human embodied flourishing. To conserve is to ameliorate more than eradicate, to sustain more than transform, to accommodate more than eliminate. Conserving disability in this way affirms human embodied variation and distinctiveness, not because it is the given, but because it is the good.

Disability conservation, then, promotes and protects human biodiversity. Conserving disability counters what disability studies scholar Alison Kafer calls our “grim imagined futures.” Revealing the emptiness of normate status counters the liberal eugenics of enhancement, improvement, and the range of technological interventions to erase disability from the human condition. Conserving disability contributes to imagining what Nancy Mairs calls a “habitable world: a world that wants me in it.”


Source: ABC

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