Countering Ableism in Knowledge Production
Empowerment of Subaltern People and Reproduction of Epistemic Hierarchies
Abstract
Participatory action research (PAR) employs co-researchers to further epistemic justice for and empowerment of subaltern people. This methodological reflection discusses how user-led PAR with disabled people challenges ableism – hegemonic notions about normate bodyminds – in knowledge production. I draw on my experiences as a disabled anthropologist and as a facilitator of Zeg het ons! PAR projects – the Dutch version of Ask me!, Zeg het ons! seeks scientific recognition and counters ableism by empowering co-researchers to deploy their experiential disability expertise in quality-of-life research. PAR may contribute to de-ableization while partly reproducing epistemic hierarchies. PAR requires experiential and theoretical knowledge on how to deploy positionalities, institutional and interactional arrangements to be successful. More attention for experiential and practical knowledge in academic outlets could help.
References
Atkinson, Dorothy. 2004. “Research and Empowerment: Involving People with Learning Difficulties in Oral and Life History Research.” Disability & Society 19(7): 691–702. https://doi-org.eur.idm.oclc.org/10.1080/0968759042000284187
Baillergeau, Evelyne, and Jan Willem Duyvendak. 2016. “Experiential Knowledge as a Resource for Coping with Uncertainty: Evidence and Examples from the Netherlands.” Health, Risk & Society 18(7–8): 407–426. https://doi-org.eur.idm.oclc.org/10.1080/13698575.2016.1269878
Baum, Fran, Colin MacDougall, and Danielle Smith. 2006. “Participatory Action Research.” Journal of Epidemiology & Community Health 60(10): 854–857. http://dx.doi.org.eur.idm.oclc.org/10.1136/jech.2004.028662
Bednarska, Dominika. 2011. “Abilities Underneath: Bodies in the Literary Imagination”. PhD diss. University College Berkeley. https://escholarship.org/uc/item/8793j2j5
Bennett, Marlyn. 2004. “A Review of the Literature on the Benefits and Drawbacks of Participatory Action Research.” First Peoples Child & Family Review 1(1): 19–32.
Bigby, Christine, Patsie Frawley, and Paul Ramcharan. 2013. “Conceptualizing Inclusive Research with People with Intellectual Disability.” Journal of Applied Research in Intellectual Disabilities 27(1): 3–12.
Burke, Ciaran, and Byrne Bronagh Byrne, eds. 2021. Social Research and Disability: Developing Inclusive Research Spaces for Disabled Researchers. Abingdon, UK: Routledge & CRC Press.
Campbell, Fiona Kumari. 2019. “Precision Ableism: A Studies in Ableism Approach to Developing Histories of Disability and Abledment”. Rethinking History, 23(2): 138–156. https://doi.org/10.1080/1364 529.2019.1607475
Campbell, Fiona Kumari. 2009. Contours of Ableism: The Production of Disability and Abledness. New York: Palgrave Macmillan
Colligan, Sumi. 1994. “The Ethnographer’s Body as Text: When Disability Becomes Other-abling”, Anthropology of Work Review 15(2–3): 5–9.
Deal, Mark. 2003. “Disabled people’s attitudes toward other impairment groups: A hierarchy of impairments.” Disability & Society 18(7): 897–910. https://doi.org/10.1080/0968759032000127317
Durban, Erin. L. 2021. “Anthropology and Ableism”. Anthropologist 124(4): 1–14.
Foucault, Michel. 1980 [1972]. Power / Knowledge. Selected interviews and other writings 1972–1977, edited by Colin Gordon. Translated by Colin Gordon, Leo Marshall, John Mepham, and Kate Soper. New York: Random House / Vintage Books.
Fricker, Miranda. 2017. “Evolving Concepts of Epistemic Injustice”. In Routledge Handbook of Epistemic Injustice, edited by Ian James Kidd, José Medina, J., and Gaile Pohlhaus junior. Routledge Handbooks in Philosophy, 53–60, London: Routledge.
Garland-Thomson, Rosemarie. 1997. Extraordinary Bodies: Figuring Disability in American Literature and Culture. New York: Columbia University Press.
Ginsburg, Faye, and Rayna Rapp. 2020. “Disability/Anthropology: Rethinking the parameters of the human.” Current Anthropology 16: Supplement 21: S4–S15.
Goldring, John E. 2010. “Between Partisan and Fake, Walking the Path of the Insider” In Empowerment and Voice in Ethnography. Ethnography in Social SciencePractice, edited by Julie Scott-Jones, and Sal Watt, 126–140. London: Routledge.
Harding, Sandra. 1992. “Rethinking Standpoint Epistemology: What is Strong Objectivity?” Centennial Review 36(3): 437–470.
Hartblay, Cassandra. 2020. “Disability Expertise: Claiming Disability Anthropology”. Current Anthropology 61(21): 26–36.
Knevel, Jeroen, Jean Pierre Wilken, and Alice Schippers. 2022. “Experiences of Inclusive Action and Social Design Research with Social Workers and People with Intellectual Disabilities”. Social Sciences 11(3): 121. https://doi.org/10.3390/socsci11030121
Knox, Marie, Magdalena Mok, and Trevor R. Parmenter. 2000. “Working with the Experts: Collaborative Research with People with an Intellectual Disability.” Disability & Society 15(1): 49–61.
Maton, Kenneth I. and Deborah A. Salem. 1995. “Organizational Characteristics of Empowering Community Settings.” American Journal of Community Psychology 23(5): 631–656.
Meekosha, Helen. 2011. “Decolonising Disability: Thinking and Acting Globally.” Disability & Society 26(6): 667–682.
Mogendorff, Karen. 2021. “A Closer Look at ‘Wheelchair’ Ethnography: Ableism and the Insights Disabled Scholars Generate with – not despite – their Impairments and Disabilities”. In Social Research and Disability: Developing Inclusive Research Spaces for Disabled Researchers, edited by Ciaran Burke, and Bronagh Byrne, 50–63. Abingdon, UK: Routledge & CRC Press.
Mogendorff, Karen. 2013. “The Blurring of Boundaries between Research and Everyday Life: Dilemmas of Employing one’s own Experiential Knowledge in Disability Research” Disability Studies Quarterly 33(2), Special Topic: Self-reflection as Scholarly Praxis. http://dsq-sds.org/article/view/3713/3231 [online journal]
Mogendorff, Karen. 2011. “De invloed van opvoeding op de arbeidsmarktpositie van jongeren met een beperking: Implicaties voor beleid”. In Het wassende weten: Opvattingen over de toekomstige arbeidsparticipatie van jongeren met een beperking in een veranderde arbeidsmarkt vanuit verschillende disciplines, geredigeerd door Nico Blok, 66–72. Utrecht: Kenniscentrum Crossover. [The impact of parenting styles on the employment position of young disabled adults: Implications for policy.]
Mogendorff, Karen. 2007. “Looking in a Mirror: Creating Space to Explore Identities as Persons with Impairments”. Medische Antropologie 19(2): 269–288.
Moosavi, Leon. 2020. “The Decolonial Bandwagon and the Dangers of Intellectual Decolonisation.” International Review of Sociology 30(2): 332–354. https://doi-org.eur.idm.oclc.org/10.1080/03906701.2020.1776919
Oliver, Mike. 1992. “Changing the Social Relations of Research Production?” Disability, Handicap & Society 7(2): 101–114.
Romsland, Grace I., Kate L. Milosavljevic, and Tone A. Andreassen. 2019. “Facilitating Non-tokenistic user Involvement in Research”. Research Involvement and Engagement 5, 18. https://doi.org/10.1186/s40900-019-0153-3
Rubinstein, Robert A. 2018. The International Encyclopedia of Anthropology, 1–7. Edited by Hilary Callan. © 2018 John Wiley & Sons, Ltd. Published 2018 by John Wiley & Sons, Ltd. https://doi.org/10.1002/9781118924396.wbiea2230
Schalock, Robert L., and Kenneth S. Keith. 1993. Quality of Life Questionnaire. Worthington, OH: IDS.
Schalock, Robert L., and Gary N. Siperstein, eds. 1997. Quality of life: Application to Persons with Disabilities, Volume 2. Washington DC: American Association of Mental Retardation.
Shuttleworth, Russel. 2004. “Stigma, Community, Ethnography: Joan Ablon’s Contribution to the Anthropology of Impairment-Disability”. Medical Anthropology Quarterly 18(2): 139–161. https://doi-org.eur.idm.oclc.org/10.1525/maq.2004.18.2.139
Stapp, Darby C., ed. 2012. “Action Anthropology and Sol Tax in 2012: The final word?” Journal of Northwest Anthropology, Memoir 8.
Thomas, Aliki, Ayelet Kuper, Benjamin Chin-Yee, and Melissa Park. 2020. “What is ‘Shared’ in Shared Decision-making? Philosophical Perspectives, Epistemic Justice, and Implications for Health Professions Education.” Journal of Evaluation in Clinical Practice 26(2): 409–418. https://doi.org/10.1111/jep.13370
Tremain, Shelley H., ed. 2015. Foucault and the Government of Disability. Second edition. Ann Arbor: University of Michigan Press.
Van der Geest, Sjaak. 2010. “Patients as Co-researchers: Views and Experiences in Dutch Medical Anthropology”. In The Taste for Knowledge: Medical Anthropology Facing Medical Realities, edited by Sylvie Fainzang, Hans Einar Hem, and Mette Bech Risør, 97–110. Aarhus: Aarhus University Press.
Van der Geest, Sjaak. 2007. “Is It Possible to Understand Illness and Suffering?” Medische Antropologie 19(1): 9–21.
Zomerplaag, Jeroen. 2003. Eindrapportage Zeg het ons! Mensen met een verstandelijke beperking over de kwaliteit van bestaan. Utrecht: NIZW & LFB. [Final report Ask me! People with intellectual disabilities about quality of life].
Baillergeau, Evelyne, and Jan Willem Duyvendak. 2016. “Experiential Knowledge as a Resource for Coping with Uncertainty: Evidence and Examples from the Netherlands.” Health, Risk & Society 18(7–8): 407–426. https://doi-org.eur.idm.oclc.org/10.1080/13698575.2016.1269878
Baum, Fran, Colin MacDougall, and Danielle Smith. 2006. “Participatory Action Research.” Journal of Epidemiology & Community Health 60(10): 854–857. http://dx.doi.org.eur.idm.oclc.org/10.1136/jech.2004.028662
Bednarska, Dominika. 2011. “Abilities Underneath: Bodies in the Literary Imagination”. PhD diss. University College Berkeley. https://escholarship.org/uc/item/8793j2j5
Bennett, Marlyn. 2004. “A Review of the Literature on the Benefits and Drawbacks of Participatory Action Research.” First Peoples Child & Family Review 1(1): 19–32.
Bigby, Christine, Patsie Frawley, and Paul Ramcharan. 2013. “Conceptualizing Inclusive Research with People with Intellectual Disability.” Journal of Applied Research in Intellectual Disabilities 27(1): 3–12.
Burke, Ciaran, and Byrne Bronagh Byrne, eds. 2021. Social Research and Disability: Developing Inclusive Research Spaces for Disabled Researchers. Abingdon, UK: Routledge & CRC Press.
Campbell, Fiona Kumari. 2019. “Precision Ableism: A Studies in Ableism Approach to Developing Histories of Disability and Abledment”. Rethinking History, 23(2): 138–156. https://doi.org/10.1080/1364 529.2019.1607475
Campbell, Fiona Kumari. 2009. Contours of Ableism: The Production of Disability and Abledness. New York: Palgrave Macmillan
Colligan, Sumi. 1994. “The Ethnographer’s Body as Text: When Disability Becomes Other-abling”, Anthropology of Work Review 15(2–3): 5–9.
Deal, Mark. 2003. “Disabled people’s attitudes toward other impairment groups: A hierarchy of impairments.” Disability & Society 18(7): 897–910. https://doi.org/10.1080/0968759032000127317
Durban, Erin. L. 2021. “Anthropology and Ableism”. Anthropologist 124(4): 1–14.
Foucault, Michel. 1980 [1972]. Power / Knowledge. Selected interviews and other writings 1972–1977, edited by Colin Gordon. Translated by Colin Gordon, Leo Marshall, John Mepham, and Kate Soper. New York: Random House / Vintage Books.
Fricker, Miranda. 2017. “Evolving Concepts of Epistemic Injustice”. In Routledge Handbook of Epistemic Injustice, edited by Ian James Kidd, José Medina, J., and Gaile Pohlhaus junior. Routledge Handbooks in Philosophy, 53–60, London: Routledge.
Garland-Thomson, Rosemarie. 1997. Extraordinary Bodies: Figuring Disability in American Literature and Culture. New York: Columbia University Press.
Ginsburg, Faye, and Rayna Rapp. 2020. “Disability/Anthropology: Rethinking the parameters of the human.” Current Anthropology 16: Supplement 21: S4–S15.
Goldring, John E. 2010. “Between Partisan and Fake, Walking the Path of the Insider” In Empowerment and Voice in Ethnography. Ethnography in Social SciencePractice, edited by Julie Scott-Jones, and Sal Watt, 126–140. London: Routledge.
Harding, Sandra. 1992. “Rethinking Standpoint Epistemology: What is Strong Objectivity?” Centennial Review 36(3): 437–470.
Hartblay, Cassandra. 2020. “Disability Expertise: Claiming Disability Anthropology”. Current Anthropology 61(21): 26–36.
Knevel, Jeroen, Jean Pierre Wilken, and Alice Schippers. 2022. “Experiences of Inclusive Action and Social Design Research with Social Workers and People with Intellectual Disabilities”. Social Sciences 11(3): 121. https://doi.org/10.3390/socsci11030121
Knox, Marie, Magdalena Mok, and Trevor R. Parmenter. 2000. “Working with the Experts: Collaborative Research with People with an Intellectual Disability.” Disability & Society 15(1): 49–61.
Maton, Kenneth I. and Deborah A. Salem. 1995. “Organizational Characteristics of Empowering Community Settings.” American Journal of Community Psychology 23(5): 631–656.
Meekosha, Helen. 2011. “Decolonising Disability: Thinking and Acting Globally.” Disability & Society 26(6): 667–682.
Mogendorff, Karen. 2021. “A Closer Look at ‘Wheelchair’ Ethnography: Ableism and the Insights Disabled Scholars Generate with – not despite – their Impairments and Disabilities”. In Social Research and Disability: Developing Inclusive Research Spaces for Disabled Researchers, edited by Ciaran Burke, and Bronagh Byrne, 50–63. Abingdon, UK: Routledge & CRC Press.
Mogendorff, Karen. 2013. “The Blurring of Boundaries between Research and Everyday Life: Dilemmas of Employing one’s own Experiential Knowledge in Disability Research” Disability Studies Quarterly 33(2), Special Topic: Self-reflection as Scholarly Praxis. http://dsq-sds.org/article/view/3713/3231 [online journal]
Mogendorff, Karen. 2011. “De invloed van opvoeding op de arbeidsmarktpositie van jongeren met een beperking: Implicaties voor beleid”. In Het wassende weten: Opvattingen over de toekomstige arbeidsparticipatie van jongeren met een beperking in een veranderde arbeidsmarkt vanuit verschillende disciplines, geredigeerd door Nico Blok, 66–72. Utrecht: Kenniscentrum Crossover. [The impact of parenting styles on the employment position of young disabled adults: Implications for policy.]
Mogendorff, Karen. 2007. “Looking in a Mirror: Creating Space to Explore Identities as Persons with Impairments”. Medische Antropologie 19(2): 269–288.
Moosavi, Leon. 2020. “The Decolonial Bandwagon and the Dangers of Intellectual Decolonisation.” International Review of Sociology 30(2): 332–354. https://doi-org.eur.idm.oclc.org/10.1080/03906701.2020.1776919
Oliver, Mike. 1992. “Changing the Social Relations of Research Production?” Disability, Handicap & Society 7(2): 101–114.
Romsland, Grace I., Kate L. Milosavljevic, and Tone A. Andreassen. 2019. “Facilitating Non-tokenistic user Involvement in Research”. Research Involvement and Engagement 5, 18. https://doi.org/10.1186/s40900-019-0153-3
Rubinstein, Robert A. 2018. The International Encyclopedia of Anthropology, 1–7. Edited by Hilary Callan. © 2018 John Wiley & Sons, Ltd. Published 2018 by John Wiley & Sons, Ltd. https://doi.org/10.1002/9781118924396.wbiea2230
Schalock, Robert L., and Kenneth S. Keith. 1993. Quality of Life Questionnaire. Worthington, OH: IDS.
Schalock, Robert L., and Gary N. Siperstein, eds. 1997. Quality of life: Application to Persons with Disabilities, Volume 2. Washington DC: American Association of Mental Retardation.
Shuttleworth, Russel. 2004. “Stigma, Community, Ethnography: Joan Ablon’s Contribution to the Anthropology of Impairment-Disability”. Medical Anthropology Quarterly 18(2): 139–161. https://doi-org.eur.idm.oclc.org/10.1525/maq.2004.18.2.139
Stapp, Darby C., ed. 2012. “Action Anthropology and Sol Tax in 2012: The final word?” Journal of Northwest Anthropology, Memoir 8.
Thomas, Aliki, Ayelet Kuper, Benjamin Chin-Yee, and Melissa Park. 2020. “What is ‘Shared’ in Shared Decision-making? Philosophical Perspectives, Epistemic Justice, and Implications for Health Professions Education.” Journal of Evaluation in Clinical Practice 26(2): 409–418. https://doi.org/10.1111/jep.13370
Tremain, Shelley H., ed. 2015. Foucault and the Government of Disability. Second edition. Ann Arbor: University of Michigan Press.
Van der Geest, Sjaak. 2010. “Patients as Co-researchers: Views and Experiences in Dutch Medical Anthropology”. In The Taste for Knowledge: Medical Anthropology Facing Medical Realities, edited by Sylvie Fainzang, Hans Einar Hem, and Mette Bech Risør, 97–110. Aarhus: Aarhus University Press.
Van der Geest, Sjaak. 2007. “Is It Possible to Understand Illness and Suffering?” Medische Antropologie 19(1): 9–21.
Zomerplaag, Jeroen. 2003. Eindrapportage Zeg het ons! Mensen met een verstandelijke beperking over de kwaliteit van bestaan. Utrecht: NIZW & LFB. [Final report Ask me! People with intellectual disabilities about quality of life].
Published
2023-02-22
How to Cite
Mogendorff, Karen. 2023. “Countering Ableism in Knowledge Production: Empowerment of Subaltern People and Reproduction of Epistemic Hierarchies”. Swiss Journal of Sociocultural Anthropology 28 (February):41-60. https://doi.org/10.36950/sjsca.2022.28.8008.
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