Possible and Disability
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KeywordsDisability Disability studies Disabled people’s movement Affirmation Intersectionality Humanism Posthuman
Disability oftentimes tends to be associated with misfortune, personal tragedy, passivity, and dependency. However, a closer look at the actual history of the disabled people’s movement and disability studies reveals stories of imagining disability and therefore societies differently. The lineage of envisioning the world through the prism of the possible (rather than impossible) is not complete without including the theorization and politicization of disability – that in the past few decades has gained intellectual momentum. In the following paragraphs, we map the most critical turning points in those academic and activist developments.
Disability Studies as an Academic Counterpart of the Disabled People’s Movement
In the 1970s, the British group of disabled people, the Union of the Physically Impaired Against Segregation (UPIAS), contributed hugely to changing the dominant paradigm in thinking about disability, a dominant view that framed it as a medical and individual problem. In a manifesto from 1976, they announced that it was not individual bodies but society that was responsible for the production of disability. In “The Fundamental Principles of Disability,” they defined disability as a phenomenon caused by social conditions and one that can and should be changed (UPIAS 1976, p. 4). Introducing the distinction between disability and impairment, they postulated that the reason for the unequal status of people with disabilities is not related to their innate limitations, but physical and social barriers that impede their participation in various areas of life. A social approach to the study of disability becomes a tool for understanding and contesting discrimination, isolation, and oppression of people whose bodies and minds deviate from strictly defined sociocultural norms as well as those associated with health rather than illness. In this approach, disability is becoming not a medical category, but a political one.
In the early 1990s, disability studies founded on the tension between medical and social views of disability started to become part of academic institutions. Disability studies are located between scientific reflection and social and political activism, where they play a critical role (pointing to oppression, seeking legislative changes and changes in social attitudes, and emancipation, linked to the activism of disabled people and their allies). Disability studies investigate the injustice and oppression of people with disabilities – nowadays and in a historical perspective – to show the paths for the future but also bring disability issues out of the closed circle of medicine, rehabilitation, and social assistance.
Activists’ and Academics’ Encounters: Social Model of Disability
[n]othing more or less fundamental than a switch away from focusing on the physical limitations of particular individuals to the way the physical and social environments impose limitations upon certain groups or categories of people (Oliver 1983, p. 23) and thus excludes them from mainstream of social activities. (Oliver 1996, p. 22)
Oliver’s definition of the social model of disability, with its stark division between impairment and disability, enhanced the materialist perspective in regard to identifying and examining disabling conditions that disabled people face in societies – and therefore has been referred to as the “strong social model” approach, while prominent disability studies scholars who adhered to it were labeled as “strong social modelists” (Shakespeare and Watson 2001). One of these social modelist academics, Colin Barnes, explained that the social model is to function in disability research and interrelated disability advocacy and politics as “a tool with which to gain insight into the disabling tendencies of modern society, in order to generate policies and practices to facilitate their eradication” (2003, pp. 6–7). Indeed, the social model of disability triggered a wealth of knowledge-making and meaning-making that addressed disability (Goodley et al. 2012; Roulstone et al. 2012) and in effect revealed and challenged material, environmental, and cultural barriers as well as prejudices, stereotypes, and oppression, permeating capitalist societies (Meekosha and Shuttleworth 2009). Contesting hegemonic disability models and interrelated narratives and/or representations of disabled people with the means of the social model informed disability advocacy and politics – some of which was successful in tackling structural barriers (Morris 1991; Roulstone et al. 2012) and brought a stronger sense of empowerment and dignity for disabled individuals (Morris 1991). Specifically, the social model of disability has served as one of the foundational ideas of the Convention on the Rights of Persons with Disabilities (UN 2006), which definitely frames disability as a human rights issue. For disabled people around the globe, the Convention is associated with “new possibilities” in regard to making their lives “better.” Moreover, the Convention imposes on states the obligation to collect data necessary to implement the provisions of the Convention in practice. Thus, statistics and data collection clearly play a service role toward the rights and freedoms that CRPD postulates. They are to provide information necessary to monitor the situation of people with disabilities and to implement policies and activities that support equality and equal opportunities for people with disabilities in various areas of life.
Feminist Disability Studies
[feminist disability studies] is more than research and scholarship about women with disabilities, just as feminist scholarship extends beyond women to critically analyze the entire gender system. Like feminist studies itself, feminist disability studies is academic cultural work with a sharp political edge and a vigorous critical punch. Feminist disability studies wants to unsettle tired stereotypes about people with disabilities. It seeks to challenge our dominant assumptions about living with a disability. It situates the disability experience in the context of rights and exclusions. It aspires to retrieve dismissed voices and misrepresented experiences. It helps us understand the intricate relation between bodies and selves. It illuminates the social processes of identity formation. It aims to denaturalize disability. In short, feminist disability studies reimagines disability. (2004, p. 1557)
Therefore – while feminist disability scholars draw upon the social approaches to disability (including the social model) – they have expanded it theoretically and empirically and in doing so shed new light on the nature of disablement as well as provided new ways to tackle it.
Disability Studies: Epistemology and Methodology (Case Studies: Intersectionality and Participatory and Emancipatory Research)
The transformation of the disability model from the medical/individual to the sociopolitical and human rights, the development of civic aspirations, and the work of activists with disabilities led to paradigmatic changes in disability studies (Goodley 1998; McVilly and Dalton 2006) and also highlighted the discrepancy between social discourses and research rhetoric, forcing researchers to think about ways to study disability.
The topic of disability has been raised for years by researchers, and at the same time, disabled people often have had the feeling that regardless of the field, they are talked about and written off as patients or dehumanized research objects. The reason for this is still the dominant analysis of various aspects of the lives of people with disabilities from the perspective of other people: carers, therapists, teachers, or service providers. This leads to a situation in which the issues undertaken by researchers are not always important for the interested parties themselves – people with disabilities – especially in a specific sociocultural or situational context, and the conducted research does not necessarily bring measurable benefits to the persons concerned.
The answer to the criticism of the monopolization of knowledge by the army of “experts” has been the participatory paradigm (Heron and Reason 2001). It assumes that, in order for scientific research to provide important foundations for optimal organization of living space for people with disabilities, it should take into account their voices and involve the interested parties themselves. Participatory research is a two-way exploration. The first one, based on the traditional role of the research subject, engages interested parties themselves and uses methods that create the possibility of activating people with disabilities and reaching the knowledge important for them. The second one is that people with disabilities take on nonstandard roles and appear as advisors and consultants as well as co-investigators with varying degrees and scope of involvement and decision-making and executive participation in the research process (e.g., Bigby and Frawley 2010; Garcia-Iriate et al. 2009; Traustadóttir 2001; Wołowicz 2018). The key importance of a participatory approach in scientific research is expressed in obtaining knowledge that reflects the subjective perception of reality and its meanings and assessments from the perspective of the needs and possibilities arising from the disability itself.
A unique and innovative example of research in the participatory paradigm is the inclusive research which involves people with intellectual disabilities1 in the roles of researchers. In this proposed research model, people with intellectual disabilities are not treated as static and passive from the point of view of the dynamics of the research process, sources of knowledge, where the subject faces ready-made research assumptions, having generally completely no influence on the course of the research process. In the inclusive research model, people with intellectual disabilities are involved in developing issues and research concepts, conducting research, analyzing the material obtained in order to search for the meanings arising from it, co-creating theories, and disseminating the results (Goodley and Moore 2000; O’Brien et al. 2014). The position of the respondents defined in this way is a consequence of the recognition of their competence as subjects of their own activities and experts in their own affairs. The strategy of including representatives of this group as co-investigators is still underway, as well as an attempt to describe ways to maximize their participation and control at every stage of the study. How to disclose their competences in the research process and how to protect their autonomy and agency are also discussed (Abbot and McConkey 2006; Walmsley 2001). Inclusive research contributes to overcoming stereotypes assuming the lack of self-awareness of people with intellectual disabilities, lack of orientation in reality, and the inability to assess it. This research is important in strengthening the understanding of intellectual disability as a social construct, showing the ambiguity of the meaning of reality from the perspective of people with disabilities. Inclusive studies also show the diversity of the population of people with disabilities.
Within disability studies, disability is not a universal, unambiguous, and invariable phenomenon but a concept that, as emphasized by the Convention on the Rights of Persons with Disabilities, is constantly evolving. The medical model of disability contributes to a consolidation of thinking about people with disabilities as “medical cases,” assuming that all the difficulties they experience are only the consequences of illness or damage to the body (Barnes and Mercer 2004). Therefore, disability in this model is not only a differentiating feature but also a negative one. In order to overcome research limitations in social sciences and analyses of sociocultural diversity, the concept of intersectionality has been proposed, which is the result of attempts to theorize difference and reflect on how to value and incorporate diversity into the social context not as negative or problematic phenomenon (Hill Collins 2009).
Threads related to the ways in which identity and belonging to various groups are intertwined and the impact of this belonging on life opportunities were first raised by American feminist activists in the 1970s. At that time, postulates for building a social order in which women’s possibilities and aspirations would not be perceived in one dimension, i.e., only through the prism of gender, were developed. Nevertheless, at the end of the 1970s, some feminist activists began to pay attention to the fact that feminism postulations do not always take into account the perspectives and experiences of women perceived as socially “other” – with ethnic identities other than white, from lower classes, with lower education or income. Thus, they showed that many characteristics, identities, and belonging decide about the human situation. Following this lead, Kimberlé Crenshaw, an American researcher, introduced the concept of intersectionality to her scientific work in the late 1980s (Crenshaw 1989). At present, intersectionality is understood as an approach analyzing the ways in which social and cultural categories intersect, overlap, and strengthen one another. Adopting the perspective which says that activities for people with disabilities should take into account knowledge of the specifics of their functioning also due to gender, age, sexual orientation, migrant status, and other premises allowed to see this group as internally diverse and more effectively study the parts which do not fit into the privileged group within the minority (Knudsen 2005; Wołowicz-Ruszkowska 2015).
Affirmation and Capacity Perspectives
Affirmation is at the heart of the politics of disability. The very acts of disability activists are, at their very essence, the affirmation of disability as a productive entity and the celebration of the lives of disabled people. This double affirmation (1) posits disability as an aspect of the human condition to think differently about the world and (2) positions disabled people as political activists with much to contribute to the current political commons. Let us take each of these affirmative moments in turn. To suggest that disability is a phenomenon, an experience, a lifeworld, or an ontology to rethink our relationships in the world is a provocation offered by disability studies. An example of reframing is given by Tim Booth and Wendy Booth (1994, 1998) and their pioneering work on the lives of parents with intellectual disabilities. Their disability research worked closely with the lives of these parents to capture many of the challenges they faced in parenting their children. These challenges were often associated with the barriers they faced, as new parents, from professionals such as social workers who already had in mind the assumption that parents with the label of intellectual disabilities were psychologically incapable of looking after their children. This assumption should not be understood as a prejudice endemic within the social work profession because social workers are inherently negative human beings. Instead, Booth and Booth found that a deficit perspective was ripe within social work because of the commonly held view (a view that abounds even today across our society) that having an intellectual disability equates with incompetence to parent. Social workers, then, translated this deficit thinking into their practice and were more likely to find parental incompetence precisely because they were expected to find it in the parenting of adults with intellectual disabilities. In contrast, they found, were one to adopt a capacity perspective to social work practice – to assume that parents can look after their children with the right kinds of support network around them – then parents (and their children) were more likely to benefit from this kind of professional input. Booth and Booth (1998) developed the concept of distributed parental competence. This idea assumes that strong kinship and community support networks provide the necessary conditions to support and empower parents in their daily lives with their children. Indeed, the very presence of intellectual disability and the community’s knowledge of this phenomenon, in a number of their research case studies, led to a variety of rich, supportive, and empowering support networks that supported the families. Intellectual disability has the potential, then, to provoke an affirmative community response. Disability elicits capacity perspectives. This leads us to the second point of affirmation: the contributions of disabled activists. In my 1998 book, I found that people with intellectual disabilities were involved in a rich politics of resilience (Goodley 1998). Since the 1960s, people so-labeled have been engaged in the self-advocacy movement, a global political movement that fights for the political recognition of people with intellectual disabilities. Drawing on slogans such as “Label Jars Not People” and organizing under the title of “People First,” people with intellectual disabilities have demanded that we not only recognize their ambitions and aspirations but also question the potentially damaging consequences of sticky labels such as intellectual disabilities. This is not to deny the presence of intellectual disability, though it is to question the dehumanizing impact of its application. This is but one example of the affirmative qualities associated with work of disability activists.
Humanism and Disability Theory
[n]ot all of us can say, with any degree of certainty, that we have always been human, or that we are only that. Some of us are not even considered fully human now, let alone at previous moments of Western social, political and scientific history. (Braidotti 2013, p. 1)
Disability studies and disability politics contribute toward the project of what Paul Gilroy (2018) calls a “re-enchantment with humanism.” And this project hails in a critical encounter with how the human category has been constituted, in ways that include or exclude certain kinds of human being.
Posthuman Disability Studies
I define the critical posthuman subject within an eco-philosophy of multiple becomings, as a relational subject constituted in and by multiplicity, … a subject that works across differences and is also internally differentiated, but still grounded and embodied. Posthuman subjectivity expresses an embodied and embedded and hence partial form of accountability, based on a strong sense of collectivity, relationality and hence community building … an affirmative bond that locates the subject in the flow of relations with multiple others. (Braidotti 2013, pp. 49– 50)
In contrast to the individually bounded autonomy associated with the humanist subject, the posthuman subject emphasizes distribution, relationality, and collectivity. The posthuman condition is one in which we all find ourselves relationally distributed across virtual and real connections between humans and nonhumans. A child living in Manchester, England, for example, is a global child, touched by the Internet, governed by supranational and national educational policies, plugged into a host of virtual environments, located in a local community increasingly influenced by the pan-national. And, as Goodley et al. (2014) have argued, disability is in many the quintessential posthuman subject. It is possible, therefore, to position disability politics and the lives of disabled people in a posthuman milieu precisely because these politics and ways of living are extended and distributed. Hence, the parenting and self-advocacy of people with intellectual disabilities can be reread as evidence of productive posthuman interdependencies, relational connections, and affirmative community networks. By moving into the posthuman register, we bypass the narrow humanist conceptions of humanity as autonomy and, instead, consider the ways in which the politics of disability feed positively into the posthuman condition in ways that enrich the lives of disabled people and those around them. Moreover, disability is positioned not as the absence of humanity but a phenomenon from which to think together about the posthuman contemporary moment.
Intellectual disability is a developmental disorder characterized by a decrease in the general level of intellectual functioning and deficits in adaptive behavior.
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