Social Theory of Disability and Experiential Knowledge

Definition

In our contemporary societies, structured by unequal social relations of production, experiential knowledge remains in the shadow of expert or academic knowledge that provides legitimacy to any action that claims kinship. In the first part, this entry examines changes in the social theory of disability, characterized by the development of critical disability studies. The second part discusses forms of action in the disability field, specifically experiential knowledge, peer support, and their relationship to expert knowledge. Drawing upon a review of the literature, a synthesis of the evidence on the articulation of these three notions is produced. The results will illustrate the respective place and role of the different forms of knowledge derived from critical disability studies in the development of actions concerning disabilities. The information collected will make it possible to identify the links between these forms of knowledge and how they improve the ability of people with disabilities to obtain full citizenship.

1. Introduction

The development of knowledge in the humanities and social sciences, particularly in sociology, helps answer a key question: How have these fields fostered a comprehensive understanding of our disabling society? Synthesizing the knowledge regarding disability developed in this field helps identify the elements that facilitate determining the social practices that structure contemporary societies with regard to people with disabilities. This exercise will identify the main features of this process over the last few decades, with an emphasis on the emergence of a social movement that is overly critical of the practices inherited from the previous century concerning people with disabilities in post-Second World War societies. According to Chouinard, “an ableist society is, then, one that tends to devalue its non-able-bodied members; despite good intentions on the part of many of its citizens to treat these ‘others’ as equals” [1]. We will see how this movement contributed to the slow emergence of disability as an issue for sociological studies. This dynamic led to the creation of disability studies and subsequently critical disability studies. This coincided with a new phase in the way we interpreted the social phenomenon of disability, defining it as a socio-political construct. This differs significantly from what is done in medicine, mainly because of the increased autonomy of disability studies. The recognition of the “disability” experience as a source of change and the expression of subjectivity that carry affirmations of identity is mobilized in the struggle for citizenship, both in terms of knowledge and praxis.

Finally, “disability” experience is related to the emergence and recognition of knowledge forms. This knowledge challenges the practices surrounding research and services. A final conclusion will briefly describe this phenomenon and its contribution to disability through the embodied utterance of social and identity dynamics, both individually and collectively.

2. Sociological Perspectives on Disability: Shifting the Gaze

From a historical perspective [2,3,4], we can conclude that social practices of disability represent a kind of advanced modernity [5,6]. Originally, people defined disability as a medical reality with a medical response. People subsequently treated disability as a social phenomenon. A series of stages leading to disability studies and, especially, critical disability studies characterize the emergence of this understanding of disability; Indeed, according to certain academics, a first and a second wave of such emergence highlighted this theoretical development [7,8,9]. The social action movement of people with disabilities cannot be separated from this phenomenon. They denounced the historic oppression that others subjected them to, focusing on the need for the exercise of appropriate civil rights [9,10,11]. We illustrate this process (see Figure 1), also characterized by identity issues in different domains of ordinary activities in contemporary societies. It is crucial to define some key notions that support the development of this argument before presenting the social model and its transformations.

Definition of Core Notions

This entry is structured around several notions illustrating both socio-political changes and innovative practices in the disability field, which require definition before moving forward. The social changes that characterized the 1970s and 1980s revealed several oppressive processes affecting people with disabilities. People have since defined these discriminatory processes as ableism or disablism. For one, Chouinard formulates a definition of disablism as a set of assumptions (conscious or unconscious) and practices that promote the differential or unequal treatment of people as a result of actual or presumed disabilities. Indeed “Ableism refers to ideas, practices, institutions, and social relations that presume able-bodiedness, and by so doing, construct persons with disabilities as marginalized, oppressed, and largely invisible ‘others’” [1] (p. 300). This presumption, whether intentional or not, means that one’s ability to approximate the able-bodied norm influences multiple facets of life. These include the character and quality of interpersonal relations, economic prospects, and degrees of physical and social access to various life spaces. Goodley and Campbell also align with this approach in their sociological interpretation of these social exclusion processes, by questioning the role of the norm [12,13]. These transformations have also led to the emergence of certain social practices, such as peer support, which constitutes a singular knowledge form based on the disability experience. According to Albrecht, this practice can be defined as the ability to understand another’s situation through shared experience. “Through this common understanding, peers can share stories, exchange information, and often, once the relationship has become solid enough, challenge each other when they are in conflict. Peer support stresses experiential and not professional knowledge” [14] (p. 1230). The last part of this definition is important because this knowledge draws on experience and remains crucial for both support and collective advocacy for people with disabilities. Borkman has defined experiential knowledge as “truth learned from personal experience with a phenomenon rather than truth acquired by discursive reasoning, observation, or reflection on information provided by others” [15]. This notion emerged from historic changes whose key developments we will outline, particularly due to the structuring nature of experiential knowledge, the praxis articulated around the theoretical genesis of disability as a social phenomenon, and the necessary transformation of the oppressive organization.

3. The Social Action Movement for the Political Emancipation of People with Disabilities

It’s important to contextualize the social action movement within the transformative changes associated with the period of time when the movement developed. These changes marked a breakdown that coincides with the development of a critical discourse regarding the governance of the then-dominant society. We must consider the philosophical and theoretical contributions of the Brazilian educational philosopher Paulo Freire as an important source within the liberation movement. He was an important figure whose work influenced social movements, embodying critiques of the processes of oppression of marginalized populations and promoting a process of awareness among these social groups capable of transforming social practices and generating knowledge. People recognize him particularly for his pedagogical approach supporting groups from a participatory research perspective [16,17,18,19].

This critical pedagogy regarding oppressive structures dehumanizing individuals [16] influenced movements emerging at the time, such as that of people with disabilities. From the 1960s and 1970s onwards, participants in these social movements and survivors of psychiatric institutions progressively found or seized upon these perspectives to turn them into national and international social struggles. Peer support practices emerged from the movement of “deinstitutionalization, demutualization,” [20,21,22,23,24] including those with mental health issues. In contrast to the individual model, the social model of disability [25,26,27,28,29] included both “by and for,” hence placing both the solution and the problem squarely within society itself. Henceforth, aspects of society—not just personal characteristics—enter the equation when explaining disability or social exclusion. Struggles for the social and political emancipation of people with disabilities are viewed as the latest movements whose actions seek to promote civil rights. Drieger points out that one of the lessons learned from these movements is that “when others speak for you, you lose out” [22]; this is what gave shape to the emblematic leitmotif of struggles in the disability field, “Nothing about us without us” [24]. This notion of experience was the key element on which activists built emancipatory discourse, helping to put forward the knowledge that emerged from the experience of disability as a singular source of social change. According to some, this movement also led to the adoption of “innovative” legislation to counter disability discrimination, such as the Americans with Disability Act. This encouraged individuals to emerge from the institutions which had held them back and appear in the job market, in court, or in public debate [30,31].

This movement contributed to the development of disability as an issue and, above all, as a subject of interdisciplinary social studies. From a sociological perspective, disability is seen according to French sociologist Marcel Mauss [32] as a “total social fact” approaching it through the complexity of the individual’s relationships with space and time. According to Barnes, Mercer, and Shakespeare [33] this is not as simple as one might expect. First, it is important to acknowledge that, while various discursive tendencies exist, the sociological perspective on disability defines it primarily as a social phenomenon rather than a biological or medical one. For these authors, the ’role of choice, meaning, and agency in the experience of impairment/disability’ [33] (p. 37) is significant. At the heart of this experience is the exclusion of people with disabilities from the general population because of the material conditions under which society is organized [25,27,33,34]; or as a result of a minority social construct, or issues of identity and culture [29,35,36,37]. On the heels of this, sociology has focused on understanding these practices of exclusion. In Western societies, activists have sought to free these practices from the medical dominance of disability exercised by health and well-being practitioners. Initially this effort was propelled by the social model, which relies on a binary modern rationality that distinguishes impairment as a functional reality and socially constructed disability [8,10,38]. At the time, people saw this model as a major contribution to both understanding and transforming situations of exclusion based on the notion of disability shifting the focus from the individual to society.

The development of this model in the British context reveals a path like that of the Americans in certain respects but differs in its theoretical influences. The leading British figures were V. Finkelstein and M. Oliver, who laid the foundations, also rooted in the social struggles waged by those who rejected life in specialized institutions. Collective action theories, represented among others by the work of French sociologist Alain Touraine [39,40], encapsulate Marxist and neo-Marxist influences on the organization of society, particularly in the economic sphere. This perspective stresses that disability is a social construct, the result of an oppressive society; capitalism and the consequences of modern industrialization, which mark a profound transformation of social structures. The approach resolutely orients itself towards a materialist perspective, unlike the idealism that characterizes other representations. Finally, Oliver [25,38] emphasized the notion of hegemony, dear to Italian philosopher Antonio Gramsci, who attributed importance to the organic link between actors and to the researchers and intellectuals who also shared the experience of oppression in a society built around the emblematic figure of normality, that is, of the “able-bodied.” Beyond these variations in perspective, it should be noted that “disability studies emphasize that capacity and disability are not so much a question of the capacities and limitations of bodies as of what we expect of a body at a particular time and in a particular place” [30] (p. 524). According to Flynn [41,42], the development of critical disability studies was an attempt to respond to the criticisms levelled against disability studies, which represented disability based on the paradigm of modernity and materialism. This contributed to the emergence of the social and political definition of disability but made it difficult to adopt other approaches.

4. The Absence of the Body as a Fulcrum for Criticism

Such a perspective, regarded as “revolutionary or even radical” by some authors [25,26], has drawn effective criticism from feminist, cultural, and postcolonial theorists such as Garland-Thompson, Flynn, Morris, Thomas, McRuer and Goodley [30,42,43,44,45,46,47]. The strong focus on “physical disability” issues prompted feminist criticism. Jenny Morris [43] and others denounced the “masculinist” nature of the campaign. Shakespeare [48], Shakespeare, T. Corker, M [49]; and Thomas [44] claimed that the focus on society led to excluding the body. For Shakespeare [48], it was above all the oppressive character viewed as the sole possible relationship in the social model that Thomas called into question. He defined the sex/gender relationship as a social dimension, distinct from the oppression itself. This doesn’t imply that oppression disappears, but rather that we should consider other types of relationships depending on the situation [48] (p. 218). We should also emphasize here that this exclusion of the body represents a challenge to how the medical approach has historically produced the dominant description and consideration of disability. These criticisms, and many others, such as postmodern currents, have contributed to the development of a critical perspective on disability studies. In the 1990s, this critical perspective significantly transformed our understanding of disability by seeking to consider other forms of oppression that also affect marginalized groups, based on an openness towards intersectionality (Meekosha & Shuttleworth) [8] and leading to a critical social theory. This perspective corresponds to what Garland-Thompson [50] called the second wave, based on the work of the Frankfurt School, notably Max Horkheimer and Theodor Adorno [51]. Some theorists use the embodied approach as a tool to both describe the socio-political construct of disability and track the impacts of these constructions on oppressed people, including but not limited to those individuals to whom the concept of disability has been applied. Critical disability theory is grounded in personal experience and a desire to improve the circumstances of those experiencing oppression, using the tool of intersectional analysis. In a way, this reference to the notion of experience is part of the critique of the social model of disability alluded to earlier. In this way, the importance attached to oppressive experience will also lead to the emergence and recognition of a form of knowledge—experiential knowledge—to which we will return.

5. So as Not to Reduce Ableism/Disablism to a Historical Footnote

The social struggles that characterized the disability movement during the seventies and eighties helped to reveal social inequalities and forms of exclusion, as well as the transformation of social practices of disability within advanced modern societies [5]. New forms of subjectivity emerged around the figure of the “Handicapped”/Cripple as a charity figure. The interdisciplinary readings that characterized disability studies, and even more so critical disability studies, drew on the fragmented and diverse nature of disability, hence the interest in building bridges within postcolonial studies [46]. Both postcolonial perspectives and disability studies address issues of power, and it is here that the social and scientific relevance of developing a collaboration between these two areas lies. Many points of reference, embodying complex and significant questions, exist for the understanding of the relationship between individuals and societies. Here, we do not aim to argue over the added value of such a collaboration but rather simply to lift the veil on a kinship formed by the dynamics of the socio-historical relationships of social exclusion. For more information, see the works of Cleall [52]; Krentz [53]; Goodley [12].

Wright Mills’s call for a “sociological imagination” in the analysis and understanding of the world, which places social experience at the centre and encourages a comprehensive sociological reading of reality. In its aftermath, the aim is to turn the “disabling difference” in research into a liberating difference that challenges this domination. Such an approach significantly impacts knowledge production practices in academia and contributes to the continued marginalization of people with disabilities. The main issues at stake in this rethink of disability research practices are power and scientific knowledge, as well as experiential knowledge. This current of critical thought led to the development of emancipatory research practices, with Oliver at the forefront [54,55,56,57,58,59,60,61], and to a questioning of power relations by proposing, through feminist struggles, a new sharing of power to support empowerment strategies [1]. This eclectic theoretical path reveals that a subject, no longer focused on the philosophical analysis of “disability” as it relates to the world. The metamorphosis in the practice of disability research is part of the same movement, which uses intersectionality as a rudder to navigate through the complexities of identity.

It is true that more recent developments, at theoretical and practical levels, have given rise to marked preoccupations with interdisciplinarity and intersectionality where the hinge linking gender and disability is now combined with complex identity issues. Acknowledging the imperfections of this approach, Garland-Thompson nevertheless considers its contribution to the analytical understanding of disability in the social world [49] (2002, p. 4). The intersectionality perspective also draws criticism due to its divisive effect on the disability community [50]; this point is important for activists who consider disability as a socio-political issue and a unifying force for the community. Robert McRruer’s work [46] on queer and crip theories builds on this. We must add those to Garland-Thompson’s [7] Manifesto on disability within feminist theories and culturalist perspectives [9,50,62]. McRruer highlights the contribution of disability to feminist theories as a category, which then marks the beginning of ‘… understanding how disability operates as an identity category and cultural concept [enhanceing] how we understand what it is to be human, our relationship with one another, and the experience of embodiment’ [49] (2002, p. 5). This perspective finds fertile ground for development in four areas: representation, the body, identity and activism [49] (2002, p. 6), leading to the proliferation of various approaches based on the construction of identity through the analysis of oppressive practices. Contributions of the feminist perspectives to the current analysis of disability have been important for the development of critical studies, as already seen. Some authors insist on the contribution of theories derived from postmodern perspectives, like Crip or Postcolonialist theories, to the transformation of feminist analysis [63,64,65,66,67]. Hence the importance of intersectionality, which considers both diverse influences and the sense of belonging in understanding the conditions of social exclusion and the desire to transform them through emancipatory practices and discourse. As a result, we have seen the emergence of a “new” form of knowledge grounded in disability experiences and contributing to the transformation of social organization from both individual and collective perspectives.

6. Experiential Knowledge in the Field of Disability

We can only understand these practices and this knowledge properly if we place them in the context of their emergence, which saw the intersection of several currents: the development of rehabilitation in the United States, the independent living movement, the socio-political emancipation of people with disabilities, deinstitutionalization, and anti-psychiatry. Emerging at the confluence of these embodied currents of change, the concept of self-help and peer support that people put forward at the time was original, revolutionary and, for some, innovative, as we would say today. These fields of social action have been an important source of change in supporting the development of empowerment practices, both individually and collectively [68,69,70,71]. Several theoretical currents, such as phenomenology and symbolic interactionism, have shed light on what it means to live with disabilities, chronic illness and mental disorders [72]. They also highlight both the personal and the social processes involved in maintaining meaning and order in one’s life history or identity [73], as well as the posterior construction of meaning attributed to trauma [74], life events and biographical efforts [75]. As we know now, the medical model of disability, modelled on the notion of disease, imposed its hegemony throughout the 20th century [76]. Contrasting with this model, the social model of disability, including the “by and for” movement, situates solutions and problems on the side of societies and its organization [24,25,29,31].

These new perspectives aim to liberate the individual from this socio-political and institutional domination and to militate in favour of a return to an ordinary living setting. They seek a change in the understanding of disability, in which experience becomes a source of knowledge. Such a relationship between the individual and society addresses the dimensions of experience and peer support precisely. The use of this experiential knowledge, consisting in part of common sense [15] based on ordinary practice [77], to understand mutual aid relationships is recent and underdeveloped in the social sciences. It offers the possibility to situate the first term of the equation regarding this knowledge as a part of critical disability studies. The American sociologist Thomasina Borkman became interested in the issue of experiential knowledge in the 1970s as part of her self-help group and proposed a definition [15] which is part of dynamic of social construction described by Berger and Lukmann [78]. For knowledge ‘is the very act of knowing insofar as it is drawn into the dynamic of it becoming in act...’ (Macherey, P.) [79]. People construct this knowledge in action, through the experience of reality [80], in this case, living with disabilities and social exclusion. It is from this experience that people build knowledge and use it in the activity of supporting and accompanying others.

Experiential knowledge is a main source of empowerment, carried forward by those such as the independent living movement or serving as the basis to manifesting opposition to professional knowledge and practices in the management of services. Despite all these changes, its relationship with academic knowledge remains difficult and uncertain in many aspects, related to the way society is structured and works. Some studies address this situation by focusing on epistemic injustice [81,82] or disability justice, both related to intersectionality approaches. One of the concerns of both disability studies and critical studies is the following question: where is the knowledge about disability? [83,84]. This issue is central to the campaigns that individuals have led and the movement to speak for themselves, reflecting the slogan: Nothing about us without us. The question of identity having been raised, social identity as mentioned in the social epistemology approach refers to the idea of a transformative experience in literature. Such a perspective would be interesting to explore further, particularly as social epistemology addresses experience as a source of transformation and understanding of knowledge production and justice in disability. Despite the changes, this disability experience as a source of knowledge remains difficult to express as a consequence of the lack of credibility due to social power and prejudice, generating a testimonial injustice [85].

7. Conclusions and Prospects

This entry presents the metamorphoses of the theory of disability in the field of sociology and its constitution as a distinct space of research independent from health studies since the eighties. For some authors, studying disability is “a prism through which one can gain a broader understanding of society and human experience” (Simi Linton, 1998, cited in Garland-Thompson) [50]. These changes provide a definition and representation of disability as a social, cultural, and political phenomenon, not uniquely as an individual’s issues, requiring the transformation of social practices and society itself. The emergence of critical disability studies led to cross-pollination with theory concerning other forms of oppression, such as race theory, queer theory, or postcolonial theory, including feminism.

These metamorphoses in favour of intersectional analysis also highlight the emergence and development of disability experience as a valuable source of knowledge concerning the structures of domination regarding people with disabilities. We cannot neglect the “return of the body” in the analysis of disability, mainly as a consequence of discriminatory practices such as ableism or disabling experiences. Indeed, this return puts emphasis on the material conditions and organizational structures of societies as a main factor in the oppression of people with disabilities. The independent living movement is a good example of a new collective actor who seeks to fracture the walls of institutions, particularly focusing on the issue of control over the lives of people with disabilities and service to their struggles. This is suitable to raise concerns about the role of peers and knowledge based on the experience of “being disabled” [86]. In a way, this knowledge has forced intellectuals to stay in touch with the social and political realities of people with disabilities. Furthermore, this knowledge, which encompasses both personal and academic experiences, contributes to the modification of community practices regarding diversity and individuals with disabilities, and to the enhancement of their citizenship.