Disability, Gender and Power: Finding a Useful Theoretical Framework and an Appropriate Methodology

Introduction

This paper will describe the process of developing a theoretical framework and identifying an appropriate methodology for researching complex, multi-dimensional power structures, exploring and revealing the absence of the voices and concerns of Irish disabled women from two social movements in Ireland, i.e. the women’s movement and the disability movement. The shortcomings and limitations of the social model of disability will be addressed from a feminist-disability-theory perspective and possible alternative approaches will be suggested.

Background

This paper begins with a story, which is not intended to offend animal rights activists. While visiting a carpet factory on a recent holiday in Turkey a young woman demonstrated how silk was made, by stripping silk worms off their cocoons. She tossed the worms in a pot of boiling water, which she kept over a fire. She needed about 15 worms cocoons to fashion a fine silk thread on a Jenny. From these threads of silk the women in the factory made the most beautiful silk carpets, real works of art. The task of the young Turkish woman reminded me of my research project. How could disabled women struggle against multiple oppression i.e. rid themselves of paternalism, sexism and disablism? And how could I aid them, pulling all the theoretical influences – from Existentialism, Marxism, Modernism, Postmodernism, Structuralism and Poststructuralism, Feminism, Critical theory, Disability theory and years of activism together, spin a fine, strong theoretical and methodological thread, and, with their help, develop a piece of rich and empowering research? One that will a) transmit disabled women’s voices, b) will address honestly, but non-destructively, unequal power relations experienced by one identity group belonging to two movements at once, c) one that will help to augment, energise and empower all three - Irish disabled women, the Irish disability movement and the women’s movement in Ireland and d) one that is accessible to the women and at the same time will satisfy high academic standards, i.e. the requirements for a PhD dissertation. But first, I will begin by unravelling a few historical, theoretical and methodological cocoons.

Recent History

In the past three decades - predominantly in Britain and America - a radical paradigm shift in theorising disability had occurred from the - still powerful - medical model to the social model of disability. This development of the reconceptualisation of disability evolved from two theoretically different positions: 1 as a social construction – predominantly in America - and 2 as a social creation – predominantly in Britain. However, while both viewed disability as an oppressive power relationship, the first sought affirmation and facilitation of difference, the second aimed at more fundamental transformation of deep social structures.

During the 1970s, 80s, and 90s literature and research from these disabled people’s own perspectives has flourished and is still growing. However, most of the earlier work – be it in the Marxist, creationist- more Modernist - British version of the social model or in the interpretive, constructionist – more Postmodernist - American version – assumed that disabled people were a homogeneous group without any gender or other significant social distinction. This assumption of homogeneity – which has in fact sustained the hegemony of white males [1] - also rules current thinking on disability in Ireland.

Influenced by the second wave of feminism, black feminist thought and postmodernism in recent years, there has been growing resistance to the hegemony and homogeneity of disability from disabled women and minority groups. Emerging critique is now directed at the social model of disability by these groups. They not only criticise the model for its narrow, conceptual paternalistic male domination and its predominant materialist socio-political and economic tenets, but also for ignoring the heterogeneous composition of the disability community, most importantly, the recognition of the diversity among disabled people within that community and their right to define their own identity, to discuss and re-define impairment and put the disabled body in ‘the personal is the political’ context [2]. Disabled academics from a variety of other countries – including those from developing countries - many of them disabled women, have enriched the disability debate, and have begun to theorise and make valuable research contributions [3].

Specific Concerns and Questions

As a disabled theorist and researcher into disability and impairment issues, the conspicuous absence of Irish contributions – apart from very few notable exceptions [4] has struck me as a conundrum, which I have found more than puzzling. There is a dearth of indigenous research and a lacuna of Irish disability history, discourse, debate and theorising on disability from Irish disabled peoples’ perspectives generally which seem to me indicative of a lack of power and confidence among them, not found to this degree among disabled people in other countries [5] ^. My research has its origins in the desire to unravel this mystery with regard to the situation of disabled women. Faced with this void of Irish disability theory and history [6], growing concerns and questions emerged: How can I best facilitate the voice of Irish disabled women? Make the research relevant for them and their self-empowerment in their own organisations? Put it in an Irish context whilst, at the same time, having to undertake some serious theoretical and methodological globetrotting?

Perspective and Research Aims

From a sociological perspective, my wider interests lie in the role of power in the interplay between structure and agency and in the gendered nature of disability and the operationalisation of an expanded, more sophisticated social model of disability. From the perspective of a German disabled woman, living in Ireland for almost twenty years, who was active in the disability movement in Ireland and in the women’s movement in Germany, I am curious to find out why disabled women in Ireland are so barely visible and so rarely heard; and why – despite sustained efforts [7] — their specific concerns and issues seem to be neither seriously addressed nor sufficiently supported by either the Irish women’s movement or the Irish disability movement. For more than a decade I have had many conversations with a number of women who were equally curious and wanted to bring about change. Therefore, this research aims to explore the power structures and processes that disadvantage Irish disabled women in the two movements which should aid them to address their concerns and issues in almost all aspects of Irish society which affect them in their everyday lives. As an observing participant and a participant observer, as well as a disabled feminist, my main hypothesis is that disabled women in this country suffer sustained exclusion, powerlessness and inequality – simultaneously as women and disabled people - not only in society at large, but also in the two movements, which should enable them to address their situation.

Consequently, this research is not so much about disabled women, rather, it is for them to explore power structures and relations and listen to one another. It is to compare and contrast and then share the experience of German disabled women - who have a different history and culture - with that of Irish disabled women. It is about experiences of disablism, sexism, power, control and identity in different socio-cultural contexts and how to deal with arising issues. It is about the constraining and enabling experiences of power relations in the lives of Irish and German disabled women in two social movements, about increasing our knowledge and understanding, about facilitating learning from one another, and about using the research findings together to investigate, evaluate and develop options and alternative models for change and self-empowerment.

In Search of a Theoretical Framework

The primary object of the research is power and within that, power relations, powerlessness and identity. To contextualise the research: within mainstream power debates, historically power analysis has been central to social and political thought (Haugaard 1997). Contemporary power debates — permeating much of current social science literature — are frequently concerned with democracy and equality. During the early and mid 1960s, discussions of power centred predominantly on its exercise. Within this paradigm, the main focus was limited to who prevailed in the decision making process.

From the late 1960s throughout the 70s, a critique of this view from neo-Marxist perspectives emerged. These critics argued that large sections of society were excluded from ever participating in the decision-making process. With the relative decline of modernist claims in mainstream sociology during the 1980s and 90s, the predominantly materialist analyses central to this paradigm were no longer viewed as theoretically satisfactory. [8] The growing influence on British and American academics of post-structuralism and postmodernism, particularly the work of Foucault on knowledge, power and discipline, and the relationship between behaviour, power, image and identity has changed the way we now view power.

Like other social movements of the excluded (and influenced by them) disabled people began to analyse their position in society. They reconceptualised disability as an oppressive power relationship (UPIAS 1976; Abberley 1987, 1996) and developed the social model of disability (Oliver 1983, 1986, 1990, 1996) as a reaction to the dominant medical model (Parsons 1951; WHO 1981). This constituted a radical paradigm shift and changed the centre of analysis from focusing on individual’s medical conditions to social structures, institutions, environments and attitudes. [9] It also changed the social relations of research production (Oliver, 1992).

Exclusion, discrimination, inequality, powerlessness and non-representation of rights and interests of disabled people became central concerns [10]. Those concerns were in the main centred on disabled people as a homogeneous group, rather than on difference and multiple identities, largely ignoring gender and other multiple crosscutting social divisions. As in mainstream sociology, disabled sociologists, like Tom Shakespeare, many feminists, black and disabled feminists in particular, also have recently begun to draw on conceptual insights from postmodernist theory.

Foucault’s analysis of the relationship between meaning, truth and domination, as well as his work on disciplinary power in Discipline and Punish (1979) has been influential in reconceptualising power, and gained increasing prominence in the analytical discourses on feminism as well as on the meaning of disability (McDonnell 1996). Meaning is also crucial to the understanding of disabled women’s powerlessness and their own development of an independent voice, a positive identity encompassing the gendered nature and experience of disability. Furthermore, I have argued elsewhere for the expansion of the social model of disability and developed a disability equality model, which attempts to incorporate disability heterogeneity and multi-valent identity (Kwiotek, 1999).

Given all these multiple elements, my theoretical framework is going to be very complex, reflecting the nature of the research. It will draw on the interplay of social structure, replicated in the Irish women’s and the disability movement and agency treating Irish disabled women as agents. Yet at the same time, it will also incorporate Foucaultian analysis. I will draw on those elements of power analyses from both modernism and postmodernism, which are complementary rather than contradictory. In addition, I will use my own disability-equality model combined with elements from black feminist thought and disabled feminist’s recent writings:

For now, the challenge in a world that we view as constructed on multiple levels by multiple parties is to seek some sense of voice and agency that enables action (Tierney, 2000: 544).

Methodology

The choice of methodology is determined by a) ethical concerns (e.g. concerns about the women’s participation and ownership of the research), b) by my own perspective (i.e. informed by my own experience as a disabled woman who was active in the two movements) and c) the theoretical background outlined above. To enrich the research, I believe it will be beneficial to compare and contrast the experiences of power and powerlessness of Irish disabled women with that of disabled women from another country, Germany, with a different history and culture, rather than view it in isolation. The research then is a qualitative and comparative inquiry into the relative invisibility, voicelessness and non-representation of Irish disabled women compared to German disabled women and their respective experiences and concerns in two social movements. It will enquire into disabled women’s experience of the simultaneity of sexism and disablism as these create barriers to equal participation in those movements. Using the method of the ethnographer seems most appropriate, because, implicitly, much of disabled women’s own writing is often ethnographic in style. To start, I have decided to conduct first twenty non-structured in-depth interviews with German disabled women activists featuring their experiences of power, powerlessness and power relations, affecting their multivalent identities. Since there is no fixed interview setting, I am also exploring the possibilities for electronic interviewing via the Internet and how this might enhance participation and facilitate better access. The preliminary findings from the interviews with the German women will then be presented to Irish women activists in either a focus group or a seminar. Including the information from this consultation, I will then proceed with the 20 interviews of Irish disabled women activists.

The Irish women will also be encouraged to offer proposals for change themselves. The women will have been active in either the disability and/or the women’s movements in their respective countries for at least 5 years within the past twenty years and will range in class, age and educational attainments. Since this is a first and basic study, other aspects of the heterogeneity and multiple identities of disabled women will be borne in mind, but are too complex to be built into this study’s design. Drawing on the theoretical framework and historical background of the earlier parts, the research will conclude with an evaluation and a comparative analysis of the findings of the main empirical part, leading to the conclusions, which will then be utilised in the investigation of potential options attempting to offer alternative models for the self-empowerment of Irish disabled women. It is also anticipated that the work will stimulate further research to weave a beautiful carpet of empowerment with and for Irish disabled women. The final research report can be published in book form and also put on the NDA website (www.nda.ie).

Acknowledgements

I would like to thank the National Disability Authority for generously funding and supporting this research project. I also wish to take the opportunity to thank Dr. Pauline Conroy, John Baker and Mark Haugaard – my thesis supervisor at NUI, Galway for their time reading an earlier draft of this paper and their useful comments and suggestions.

References

Abberley, P. (1987), ‘The Concept of Oppression and the Development of a Social Theory of Disability’. Disability, Handicap & Society, 2 (1), 5-19

Abberley, P. (1996), ‘Work, Utopia and impairment’, Disability & Society: Emerging Issues and Insights, ed. L. Barton: Addison Wesley Longman Limited.

Barnes, C. (1991). Disabled People in Britain and Discrimination, Hurst & Co.: London

Barnes, C. (1992). ‘Disabling Imagery and the Media; An Exploration of the Principles for Media Representations of Disabled People’. (Report No.1) The British Council of Organisations of Disabled People and Ryburn Publishing Limited: Halifax.

Barnes, C. (1996), Theories of Disability and the Origins of the Oppression of Disabled People in Barton, L. (ed.), Western Society, Disability & Society: Emerging Issues and Insights, Addision Wesley Longman: Essex

Barton, L. (1996). ‘Sociology and Disability: Some Emerging Issues’. Disability & Society: Emerging Issues and Insights. Ed. L. Barton. Addision Wesley Longman: Essex.

Begum, N., (1992), ‘Disabled Women and the Feminist Agenda’. Feminist Review, 40, 70-83

Borsay, A., (1986), ‘Personal Trouble or Public Issue? Towards a Model of Policy for people with Physical and Mental Disabilities’ in Disability, Handicap & Society, 1 (2) 179-93.

Butler, J. (1997). The Psychic Life of Power: Theories in Subjection. Stanford University Press: Stanford, California.

Commission on the Status of People with Disabilities, (1996), A Strategy for Equality, Dublin: The Stationary Office

Crow, L. (1996), ‘Including All of Our Lives: Renewing the social model of Disability’. Encounters with Strangers; Feminism and Disability. J. Morris (ed.), London: The Women’s Press

Davis, K. (1988). Power Under The Microscope; towards a grounded theory of gender relations in medical encounters. Foris Publications: Holland.

Duffy, M. (1994). ‘Making Choices’. Ed.Keith, L., Mustn’t Grumble: Writing by Disabled Women. The Women’s Press: London.

Fine, M., A. Asch, Eds. (1988). Women with Disabilities: Essays in Psychology, Culture and Politics. Temple University Press: Philadelphia.

Finkelstein, V. (1980). Attitudes and Disabled People: Issues For Discussion. World Rehabilitation Fund: New York.

Foucault, M. (1979) Discipline and Punish: The Birth of the Prison. Harmondsworth: Penguin Books. First published as Surveiller et punir: Naissance de la prison, (1975).

French, S. (1996). ‘Out of Sight, Out of Mind: The experience and effects of a ‘Special’ residential school’. Encounters with Strangers; Feminism and Disability. Ed. J. Morris. The Women’s Press: London.

Garland-Thomson, R. (2001). Feminist Disability Studies Re-shaping, Re-thinking, Re-defining. Barbara Waxman Fiduccia papers on Women and Girls with Disabilities, Centre for Women Policy Studies

Gaventa, J. (1982). Power and Powerlessness: Quiescence and Rebellion in an Appalachian Valley. University of Illinois Press: Urbana and Chicago.

Goffman, E. (1963). Stigma: Notes on the Management of a Spoiled Identity. Harmondsworth: Penguin.

Hahn, H. (1988). ‘The Politics of Physical Difference: Disability and Discrimination’. Journal of Social Issues, 44 (1), 39-47.

Harbison, J. & M. Smith (1994). ‘Disability, Employment Status and the Quality of Life in N.Ireland’. Disability, Exclusion & Poverty. Papers from the National Conference Disability, Exclusion & Poverty: A policy Conference, organised by the Combat Poverty Agency, the Forum of People with Disabilities and the NRB: Dublin, 1993.

Haugaard, M. (1997). The Constitution of Power. Manchester University Press: Manchester.

Hevey, D. (1992). The Creatures that Time Forgot: Photography and Disability Imagery. Routledge: London.

Hill Collins, P. (1991). ‘Black Feminist Thought: Knowledge, Consciousness, and the Politics of Empowerment’. Perspectives on Gender. Volume 2, Routledge: New York, London.

Hillyer, B. (1993). Feminism and Disability. University of Oklahoma Press: Norman and London.

Hunt, P. (Ed.) (1966). Stigma. Chapman: London.

Hypatia, A.(2001). Special Issue: Feminism and disability, Part I, Eva Kittay, Anita Silvers, and Susan Wendell, (Eds), Alexa Schriempf, Associate Ed, Journal of Feminist Philosophy, 16 (4) Indiana University Press.

Hypatia, A(2002).Special Issue: Feminism and disability, Part II. Eva Kittay, Anita Silvers, and Susan Wendell, (Eds), Alexa Schriempf, Associate (Ed) Journal of Feminist Philosophy. 17(3) Indiana University Press.

Kwiotek, R. G. (1999). The Need for a Disability-Equality Model: A new critical theoretical Approach to disability. Unpublished Masters Thesis, Equality Studies Centre, University College Dublin: Dublin.

McDonagh, Roseleen (2001). ‘The Web Of Self Identity’. Ronit Lentin and Robby McVeigh (Eds.) Racism and Antiracism in Ireland. Beyond the Pale Publications Inc.McDonnell, P. (1996). Suitable Cases for Treatment: Institutionalising Difference in 19th Century Ireland. Paper presented at Culture, Difference and Inclusion [Seminar]. 16 -19 February 1996. Sheffield.

McDonnell, P. (2002). ‘Regulating Problem People: Discourses in Disability’. Public Lecture Series, ‘Equality’, Equality Studies Centre: University College Dublin, 7^th February.

Morris, J. (1991). Pride Against Prejudice. The Women’s Press: London.

Morris, J. (1992). ‘Personal and Political: A Feminist Perspective in Researching Physical Disability Disability, Handicap & Society. 7 (2), 157-66

Morris, J. (Ed.) (1996). Encounters with Strangers: Feminism and Disability. The Women’s press: London.

Murray, Barbara (1993). Background Paper: ‘Disability, Exclusion and Poverty: What are the Issues?’ Papers from the National Conference. Disability, Exclusion & Poverty: A Policy Conference, organised by the Combat Poverty Agency, the Forum of People with Disabilities and the National Rehabilitation Board, Published 1994.

Oliver, M. (1983). Social Work with Disabled People. Macmillan: Basingstoke.

Oliver, M. (1986). ‘Social Policy and Disability: Some Theoretical Issues’. Disability, Handicap & Society. 1(1), 5-18.

Oliver, M. (1990). The Politics of Disability. Basingstoke: Macmillan and New York: St Martins Press.

Oliver, M. (1992). ‘Changing the Social Relations of Research Production’. Disability, Handicap & Society. 7(2), 101-15.

Oliver, M. (1996). ‘A Sociology of Disability or a Disablist Sociology?’ Disability & Society: Emerging Issues & Insights. Ed. L. Barton. Addision Wesley Longman: Essex.

Parsons, T. (1951), The Social System. Free Press: New York.

Sarup, M. (1983). The poststructuralism of Foucault. Marxism/Structuralism Education: theoretical developments in the sociology of Education. Palmer Press: London.

Saxton, M. and F. Howe (1988). With wings: an anthology of literature by and about women with disabilities. Virago Press: London.

Shakespeare, T. (1994). ‘Cultural Representations of Disabled People: Dustbins of Disavowal’. Disability and Society. 3 (9), 283-301.

Silvers A. (2000). ‘Disability’. A Companion to Feminist Philosophy. Jaggar, A. and M. Young (Eds.), Blackwell Publishers Ltd :Oxford. 330-340.

Tierney, W. G. (2000). ‘Undaunted Courage: Life History and the Postmodern Challenge’. Handbook of Qualitative Research, 2nd Edition Norman K. Denzin and Yvonna S. Lincoln, Editors, Part III: Strategies of Inquiry, Chapter 20. Sage. Thousand Oakes: California.

UPIAS. (1976). Fundamental Principles of Disability. Union of the Physically Impaired Against Segregation: London.

Wendell, S. (1996). The Rejected Body: Feminist Philosophical Reflections on Disability. Routledge: London

Young, I. M. (1990). Justice and the Politics of Difference. Princeton University Press: Princeton, New Jersey.