Disability Studies : Disability Research

DiStA Diability Studies Austria : Discussion Paper: Disability Research

The origin of the text (version 16-06-2019) and about the name

At a networking meeting of DiStA (Disability Studies Austria) in Linz on May 29, 2015, it was suggested that a DiStA position text is written and put up for discussion.  Volker Schönwiese drafted a text and discussed it during several events with various persons – among other events at the lecture series “Disability Studies in Innsbruck” in the winter semester 2017 and at the DiStA networking meeting in September 2018 – and then adapted it accordingly.  This present text (version: October 2018) is the result of this exchange and is available for further discussion and clarification of positions. (The DiStA coordination team looks forward to your feedback and comments. Please send them to disabilitystudies@jku.at)

The text will present a possible research orientation of Disability Studies in Austria in the context of the international disability rights movement and the development of disability studies. An issue to be discussed is an extended description, e.g. as a double term:  Disability Studies and Emancipatory Disability Research or Emancipatory/Participatory Disability Research. (cf. „Doing Emancipatory Disability Research„: Barnes 2001 and 2014) A possible double term thus emphasises general and basic scientific approaches to disability studies as well as emancipatory and participatory disability research in different disciplines. However, regarding the name, it is maybe also more practicable to establish the single term of disability research in this context of meaning. In this text we will use this term on a trial basis.

The term „persons with disabilities“ is used according to the linguistic usage of the UN Convention on the Rights of Persons with Disabilities (UN-CRPD).

1 A broad understanding of disability

In contrast to the still dominant medical and individualising definitions and standardisation attempts, disability is seen above all as a product of exclusion practices and barriers. They are formed in social, cultural and political contexts: historical-materialistic conditions, cultural processes of the formation of meaning and political representation and decision-making structures. (cf. Plangger/Schönwiese 2013)

Disability is constructed by normative social structures and is subject to constant social change. The change can be reached in the contexts of its impact on the individual (/subject), on the relationship of persons to each other and on the embedding in higher social institutions, structures and discourses. The attribution mechanisms for social consciousness are formed by discourses mediated in particular by the media and forming the social normative system.

In this sense, disability research evades the assignment of being either normative or empirically oriented. Disability research is based on theory (deductive) and simultaneously or interactively on experiences and objects (inductive).  Disability research is the attempt to combine science with authentic positions and interests of persons with disabilities (participatory science), thus deliberately not avoiding human rights oriented partisanship. Disability research involves the dynamic and relational barrier-related concept of disability as used in the UN-CRPD. Disability research sees human rights historically as rules resulting from societal unification processes (as a social contract, cf. Assmann 2017).

2 Goals

Disability research seeks to advance theory development and to generate insights into social practice that relates real experiences of persons with disabilities to political, economic and cultural dimensions.

Disability research is not just about describing social change and historical change; it also seeks to highlight social exclusion and inequality practices in contemporary societies and societal structures, and actively change the world.

The goals of disability research are closely linked with questions of social and political justice, with the analysis of social power and violence relationships such as disciplinary powers, attribution and representation patterns and structural barriers (cf. the concept of barriers, e.g. Schulze 2011) that prevent independent living and participation.

The results are directly relevant for:

  • the construction of inclusive institutions of social empowerment (cf. Wright 2016);
  • the widespread awareness for the development of non-discriminatory environments. The discriminating social system is primarily carried by non-disabled persons on a daily basis or in professional contexts in the sense of social structure based on ableism;
  • the transformation of environments, built and public spaces towards inclusion;
  • a non-discriminatory media public;
  • the emancipation and liberation from addictive/patronising life situations and social spaces;
  • the self-understanding of a solidary society;
  • equal opportunities and
  • the participation of persons with disabilities in all spheres of life; this also means cultural participation, and not only as consumers of culture but also as active producers and actors of artistic, cultural and social life.

3 Research emancipating and participatory

A central concern in disability research is to establish and further develop participatory research strategies and methods from the disability rights movement and to seize traditions of action research. The cooperative adaptation of research methods to changing needs is crucial for persons with disabilities. A variety of methods of participatory research with appropriate reference groups ensures that the perspective of persons with disabilities prevails.

Persons with disabilities are thus the subject and not only the object of research in disability research, but they also participate in research in a variety of cooperative forms. Independently of academic knowledge resources, they can assign and determine research or be included as researchers using different methodological settings. The commissioning and participation in research, as well as the elaboration of the results, has the effect of raising awareness and emancipating persons with disabilities.

Researchers and persons without status as persons with disabilities work cooperatively as research associates as allies or co-participants with corresponding responsibility towards the goals of emancipatory disability research.

In emancipatory-participatory research projects, the researchers are positioned close to or in the field of research and feel responsible for the content and research strategies of the persons involved with disabilities and/or self-advocacy organisations. 

Disability research makes use of a variety of historical and current documents, narratives, discourses, representations, social-structural data as well as quantitative and qualitative data generated in various disciplines.

Particularly noteworthy are directly acquired and mediated experiences and narratives of persons with disabilities. Identity expressions and representations of experiences of barriers document social practice in cooperative processes of mutual assurance.

The phenomenon “disability” is theorised and empirically researched. Disability research is associated with a broad approach to methods that allow plurality in data collection and evaluation and a „soft“ and „hard“ data collection (quantitative-representative, qualitative, biography research, action research, professionalisation research, process-accompanying research). The variety of methodological approaches supports the combination of theoretical work, critical social analysis and action orientation or professionalisation.

In research, the separation of basic and applied research should be transgressed, and research strategies should be favoured that allow inductive and deductive approximation in a cyclical way to social practice. Traceability is not only an epistemic principle in this case but means a responsible – especially transparent to the interviewee/data subjects – handling of data and traceability for persons with disabilities as a client.  (cf. the full chapter: Flieger 2009)

4 Research access: interdisciplinary and transdisciplinary

Emancipatory disability research is interdisciplinary and transdisciplinary. Representatives of all disciplines who work in the emancipatory/participatory field of Disability Studies are invited to participate in the research. In particular, the integration of critical medical, interactional, psychoanalytic, systemic, economic, natural, cultural and social science approaches and projects (approaches) of artistic research is desired. Research assumes a mutual relationship between the individual and society.

Access of intersectionality is maintained, working with the entanglement of different discrimination and privilege systems. Social practice is of great importance for the formation of disability and is therefore at the centre of the research interest in disability research.

For application-oriented research, evidence for inclusive and reflexive practices should be developed (cf. point 5 professionalisation).

Basic research, application orientation and practice are not placed side by side; they complement each other, are inseparably interlinked and oriented in such a way that they serve the social empowerment of persons with disabilities.

5 Applied orientation and professionalisation

Conclusions must be drawn from emancipatory disability research for the conception of application orientation and professionalisation of all disciplines dealing with persons with disabilities.  It is for example about the incorporation of the theory and practice of integration and inclusion, the development of guidelines for the support and assistance of persons with disabilities according to the principle of independent living in social cohesion.  It is about ethical and political practices of empowerment as well as the liberation from normalisation structures, power and violence relations.  It is about taking into account the historical discourses and attribution processes that guide practice as unexamined assumptions or phantasms.  It is necessary to resist institutional corporatism and the tendencies of marketisation.  The professional involvement of persons with disabilities and the development of inclusive training and further education concepts, which can include all possible access to knowledge and action, are also central to professionalisation.

6 As an addition without end – examples for research projects – questions and topics

The analyses of economic, cultural and political developments, the research of corresponding phenomena on the macro, exo, meso and micro levels (Pohl 2005) as well as the chrono level (e.g. the research dimension development and time, individual history and historicity, the more critical further development of an ecosystemic approach) are interesting.

In disability research questions about economic resources and social rights (e.g. education, housing, health, work etc.) that can guarantee economic independence can be asked.  Questions about the political possibilities and equal rights that empower persons to make and control their own decisions  can be asked. Questions of social recognition and self-expression expressed in the rights of freedom can be pursued.  And a lot more.

There are no limits to inter-disciplinary topics in the disability research approach, an innovation thrust of questions should be supported, for example:

  • Archaeology of disability – the historical constructions of disability;
  • Science as a discourse field of the formation of disability;
  • Institutionalisation and de-institutionalisation as a social practice;
  • Personal and collective forms of resistance and disability and their history;
  • Disability, biography and subjectivation;
  • The political unconscious in the production of disability;
  • Crip Arts and cultural production;
  • DanceAbility, as an example of a cultural practice of diversity through dance and representations of diversity and difference;
  • Mad studies or research following the anti-psychiatry movement;
  • Connections between structural and personal violence and the formation of disabilities;
  • Everyday experiences and micro politics of disability;
  • Disability policy: social policy, welfare and commodification policy;
  • Breaching Experiments (Garfinkel 1980), Ethnomethodology as an analytical instrument of structures of barriers and discrimination – disability and every-day-affairs;
  • Regional planning, “site effects” (Bourdieu 1998) – the function of barriers and accessibility and alienation;
  • Attribution mechanisms and representations in culture/cultures/sub-cultures and media;
  • Global inequality and the re-production of disability as a colonial structure;
  • Salutogenesis, relational medicine and deconstruction of disability;
  • Intersectional research: disability studies with feminist, class, queer and postcolonial analyses, deaf studies, Queer DisAbility Studies and crip theory and critical disability studies, ableism and privilege awareness;
  • Disability studies and psychoanalysis, the omnipotence of fear defence mechanism as a culture;
  • Cultural/art historical research on disability from the perspective of disability studies;
  • Theology, scapegoat theory (Girard 1992) and theology of liberation;
  • Inclusive Disability Research, Educational Sciences and Psychosocial Work as Pedagogies of Liberation;
  • Education and discourse techniques of disability; Storytelling – documents of successful inclusion;
  • The representation of disability in generational conflicts and care policies;
  • Disability as a phantasm and social projection field;
  • Disability and the concepts of formation, performativity (Butler 2006) and transformation;
  • Methodologies of participatory research;
  • Disability: development between contingency, structure and power;
  • History and currentness of biopolitics;
  • Modernity in search of an aesthetic ideal and the function of disability/otherness;
  • The division and categorization of bodies in the context of the emergence of bio-social sciences at the beginning of the 20th Century;
  • Genealogies of eugenics under the National Socialism regime;
  • Structures and policies of enhancement;
  • The ambivalence of inclusion policies between mainstreaming and independent living;
  • Legal construction of disability from a disability studies perspective;
  • Disability and epigenetics: evolutionary theory, molecular biology and genetics in transition;
  • Medical Disability Studies (critical medical research).

The interdisciplinary exchange can be for example when forming a term, specifying a term, extending a term and changing the meaning of a term in the sense of how it is used or also preventing the misuse of terms.

The interdisciplinary exchange can, should and must always take place in the sense of diverse perspectives. It is helpful and essential especially for cross-thematic content such as explanations and meanings of terms.

Moreover, the interdisciplinary exchange is crucial for applied sciences and professionalisation, whereby the right of self-representation of persons with disabilities in the sense of „having a voice“ and „having a choice“ must be implemented

Refrences: Texts that have been used or have inspired reasoning:

Assmann, Aleida (2017): Menschenrechte und Menschenpflichten. Auf der Suche nach einem neuen Gesellschaftsvertrag. Wien: Picus Verlag

Arztmann, Doris/ Egermann, Eva (2015): Cyborg Exits im Klassenzimmer. Körper-Vielsprachigkeit und Crip-Materialien für schmutziges Wissen im Kunstunterricht. In: Art Education Research No. 10/2015, on the web: https://blog.zhdk.ch/iaejournal/files/2017/11/Doris-ArztmannEva-Egermann-Text_n°10.pdf

Barnes, Colin (2001): ‘Emancipatory’ Disability Research: project or process?  – http://disability-studies.leeds.ac.uk/files/library/Barnes-glasgow-lecture.pdf

Barnes, Colin (2014): Reflections on Doing Emancipatory Disability Research. In: Swain, John/ French, Sally/ Barnes, Colin/ Thomas, Carol (ed.) (2014):  Disabling Barriers – Enabeling Enviroments. Los Angeles: Sage, 37-44

Birkner, Martin (2013): Kopf der Leidenschaft?! Warum & für wen schreiben Wir? Und wer ist Wir? Ein Essay über die Orte kritischer Wissenschaft, ihre Publikation, soziale Kämpfe & Organisierung. In: Kurswechsel 1/2013, 7-14

Bourdieu, Pierre (1998): Ortseffekte. In: Bourdieu, Pierre (Hrsg.). Das Elend der Welt. Zeugnisse und Diagnosen alltäglichen Leidens an der Gesellschaft. Konstanz: UVK Universitätsverlag , S. 159-167

Butler, Judith (2006): Haß spricht: Zur Politik des Performativen. Frankfurt: Suhrkamp

Cameron, Colin (2014): Disability Research. In: Colin Cameron (ed.): Disability Studies. London: Sage , 33-36

Egermann, Eva (2015): Verwandelte Welten ohne Wunden. Über Crip, Pop- und Subkulturen, soziale Bewegungen sowie künstlerische Praxis, Theorie und Recherche. In: Fleischmann, Alexander/Guth, Doris (eds.): Kunst – Theorie – Aktivismus, Bielefeld: transcript, S. 169-191.

Flieger, Petra (2009): Partizipatorische Forschung. Wege zur Entgrenzung der Rollen von ForscherInnen und Beforschten. In: Jerg, Jo u.a. (ed.). Perspektiven auf Entgrenzung. Erfahrungen und Entwicklungsprozesse im Kontext von Inklusion und Integration. Bad Heilbrunn: Klinkhardt, 159-171. On the web: http://bidok.uibk.ac.at/library/flieger-partizipatorisch.html [21.5.2017]

Garfinkel, Harold (1980): Das Alltagswissen über soziale und innerhalb sozialer Strukturen. In: Arbeitsgruppe Bielefelder Soziologen (ed.) (1980): Alltagswissen, Interaktion und gesellschaftliche Wirklichkeit 1+2. Opladen: Westdeutscher Verlag, S. 189-262

Girard, René (1992): Ausstoßung und Verfolgung. Eine historische Theorie des Sündenbocks. Frankfurt a.M.: Fischer Verlag

Hunt, Tristram (2012): Friedrich Engels. Der Mann, der den Marxismus erfand. List Verlag 2012

Kafer, Alison (2013): Time for disability studies and a future for crips. In Feminist, queer, crip. Bloomington: Indiana University Press, 2013.

Knittler, Käthe (2013): Wissensarbeit und militante Untersuchung: Zwischen Produktion und Rebellion. Über Möglichkeiten widerständiger Wissensproduktion. In Kurswechsel, 1/2013, 74-83

Linton, Simi (1998): Kapitel 5 „Enter Disability Studies“, in: Claiming Disability. Knowledge and Identity. New York: NYUP, 117-131

McRuer, Robert (2006): Crip Theory. Cultural Signs of Queerness & Disability, New York: New York University Press.

Plangger, Sascha/ Schönwiese, Volker (2013): Bildungsgerechtigkeit zwischen Umverteilung, Anerkennung und Inklusion. Erschienen in: Dederich/Greving/Mürner/Rödler (ed.): Gerechtigkeit und Behinderung – Heilpädagogik als Kulturpolitik. Gießen: Psychosozial-Verlag, 2013, S. 55-76, on the web: http://bidok.uibk.ac.at/library/schoenwiese-bildungsgerechtigkeit.html

Pohl, Ursula (2005): Ökosystemische Integrationspädagogik in schulischen Kontexten. Ressourcen und Perspektiven in Deutschland und Spanien. Dissertation Frankfurt am Main, on the web:  http://bidok.uibk.ac.at/library/pohl-oekosystem-diss.html#idm5800160 [1.7.2017]

Schulze, Marianne (2011): Menschenrechte für alle: Die Konvention über die Rechte von Menschen mit Behinderungen, in: Flieger, Petra/ Schönwiese, Volker (2011) (ed.): Menschenrechte – Integration – Inklusion: Aktuelle Perspektiven aus der Forschung. Bad Heilbrunn: Klinkhardt

Waldschmidt, Anne (2015): Disability Studies als interdisziplinäres Forschungsfeld. In: Degener, Theresia/ Diehl, Elke (ed.): Handbuch Behindertenrechtskonvention. Bonn: bpb, S. 334-344

Wright, Erik Olin (2017): Reale Utopien. Wege aus dem Kapitalismus. Berlin: Suhrkamp

Zander, Michael (2008): Aktionsforschung – Beispiele, Probleme, Möglichkeiten. On the web: http://bidok.uibk.ac.at/library/zander-aktionsforschung.html [18.5.2017]