isability studies is an interdisciplinary domain of sociopolitical inquiry located at the intersection of various disciplines such as sociology, social policy, political science, literary theory, history, and philosophy. As a distinct field of academic activity, disability studies emerged in the 1980s, mainly in Britain and North America. It has its roots in the disabled people’s movements of 1960s and 1970s that empowered groups and individuals to seek deinstitutionalization and independent living, as well as de-medicalization of disability.1
Disability activism has embraced the social model of disability
as its “big idea.”2
Stemming from principles originally formulated by the members of the British disabled people’s organization, Union of the Physically Impaired Against Segregation, the social model defines “disability” as the restrictions of activity faced by people with specific bodily differences or “impairments” when they encounter disabling social and material contexts.3
This has been a crucial insight with major theoretical and practical implications. Similarly to the feminists’ distinction between (biological) sex and (social) gender, the distinction between (biological) impairment and (social) disability, as expounded by the social model, has shifted the focus in thinking about disabled people’s problems from the individual and his/her body toward society and its organization. This has inspired several generations of disability scholars and activists to highlight and criticize the social and political conditions of disabled people’s structurally engendered problems, referring to them in terms of oppression, exclusion, marginalization, stigmatization, inequality, and discrimination.4
Nevertheless, over the 30 years or so of its development, disability studies has refrained from exploring the ontological dimension of disabled people’s situation. Apart from several notable recent exceptions,5
scholars within the discipline have been reluctant to explicitly engage in thinking about the meaning of being—and of human being in particular—in its relation to disability. In other words, they have been reluctant to engage with existential-ontological questions.
This reluctance has its sociopolitical reasons. Leading disability studies scholars have warned that excessive theorizing alienates the discipline from
its social base.6
The attempts at analytical sophistication have been regarded as furthering the distance between theory and practice, thus widening the gap between academic inquiry and activists’ struggles for social change. While the social model still keeps this vital link alive, its elaboration along philosophical lines would arguably break it down. Is such a breakdown inevitable? One response is that a more nuanced understanding would benefit academics and activists alike. Thus Darrow Schecter notes in his discussion of Georg Simmel’s philosophical sociology that “for the sociologist no less than for the activist, it is important to be able to understand and interpret social action instead of just classifying it in terms of hermetic categories and rigidly schematic notions of interest.”7
The benefit of reflexivity that philosophy brings to social sciences has been repeatedly emphasized by critical theorists:
Philosophy . . . enables social scientists to identify and explore questions that might not otherwise be raised. Without philosophically informed social theory of the right sort whole ranges of phenomena might be sealed off from investigation and the potential political impact of the research diminished to that extent.8
Another response is that in modernity the struggle for disability emancipation is increasingly waged on the terrain of ontology.9
For example, the clash between Deaf people (the capital “D” indicates that the word is used as a cultural category) and the promoters of cochlear implants has been described as “a clash in ways of being
In a similar vein, Rod Michalko points out that “disability finds its sensibility within the ways in which a collective conceives of what it means to be human
and how it makes a place for the individual in what it socially organizes as a human community.”11
Critical philosophical analysis ensures that the ontological assumptions of the modern society—and particularly those related to the meaning of human being—are not taken for granted. Existential-ontological suspicion, then, is a major prerequisite for challenging the status quo
, including the one of disabling social and material contexts.
Proceeding from these presumptions, the present work sets out to explore the existential-ontological aspects of disability—“ontological,” because they are related to the question of being and its meaning, and “existential,” because they encompass these modes of being that directly concern human existence. The work takes as its conceptual point of departure the British social model’s
definition of disability, its distinction between “impairment” and “disability,” and its attendant critique of the “individual model” and medicalization.12
At the same time, the inquiry deliberately seeks to go beyond the social model’s classical formulations and to clarify and reformulate its ontological presuppositions—a task that will be approached head-on in Chapter 2. The subsequent chapters will focus on the ways in which the meaning of one’s being is associated with practices such as disability assessment, personal assistance, disability activism, disability-based discrimination, media representations of disability, discourses on sexuality and disability and disability rights legislation, henceforth referred to as “disability-related practices.”
Following the approach of “practice theory,” I consider “practices” to be patterned networks of interrelated activities mediated by humans and nonhuman entities.13
This inquiry will draw on cases from Bulgaria, my home country, and will be particularly interested in the investigation of those practices that constitute or challenge dis/ablism
. The term combines the notion of “disablism,” that is, rendering people inferior on the basis of their impairments,14
with the notion of “ableism,” that is, promoting certain psychophysical features as superior or “fully human.”15
Both “disablism” and “ableism” are terms coined by analogy to critical concepts with similar meaning and function such as sexism, racism, and agism. Since I take disablism to be the negative complement of ableism—unlike Campbell, who insists that the two words “render quite radically different understandings of the status of disability to the norm”16
—I combine the two terms by writing “dis/ablism.”
In order to explore disability-related practices, this investigation will resort to the methodological and conceptual tools of phenomenology—an approach that looks at the concrete (everyday, familiar, immanent) in order to uncover the general (transcendent). Drawing on ideas developed by Martin Heidegger and Maurice Merleau-Ponty that will be presented below, I consider phenomenology to be an approach that focuses on the details of everyday involved and engaged human living and finds there answers (or new questions) concerning being and meaning.17
The significance of studying phenomenologically the existential-ontological aspects of disability by looking at disability-related practices is twofold. First, any attempt to understand disability will be incomplete without analyzing the way in which the meaning of disability is related to the meaning of human being in general. Second, any attempt to challenge dis/ablism—for instance, in the area of social policy or human rights legislation—will remain questionable if it does not pay heed to the existential-ontological implications of the practical measures proposed.
The relationship between the general and the concrete—sociologically, the “macro-level” and the “micro-level,” philosophically, the “transcendent” and the “immanent”—generates a major methodological tension that will be
repeatedly thematized throughout the book. My initial idea was to highlight the relationship between disability and the meaning of human being by conceptualizing certain existential-ontological tendencies of modernity concerning disabled and nondisabled people alike. Critical theorists—including those within disability studies—have analyzed such tendencies under broad headings such as medicalization, methodological and political individualism (and neoliberal individualism in particular), productivism, consumerism, instrumental rationality, and technological “enframing.” In developing the project for my research, I summarized these notions into three modes of reduction of the human
—objective, subjective, and instrumental. This critical framework was strongly influenced by Heidegger’s version of phenomenology, and—more specifically—by his critique of the metaphysics of presence and modernity.18
My main argument contains three elements that I consider to be fundamental for the understanding of “disability” within disability studies: (a) bodily differences, (b) mediation, and (c) restrictions of activity. My contribution to the discipline consists in exploring these elements and their interrelations in the light of the existential-ontological considerations suggested by the aforementioned critical phenomenological framework. Thus I argue that mediation (element b) incorporates existential-ontological reductions, and that restrictions of activity (element c) amount to und...