De la identidad enterada/forastera a la opresión/liberación colectiva: navegando por la posicionalidad en la investigación sobre discapacidad
DOI:
https://doi.org/10.28998/rm.2023.13.15312Palabras clave:
Posicionalidad, Interseccionalidad, Estudios de la Discapacidad, Etnografía reflexiva, Conocimiento experiencialResumen
La primacía del conocimiento experiencial es una base indiscutible del activismo y la erudición sobre la discapacidad. Las políticas de identidad y la interseccionalidad llaman la atención sobre la gama limitada de voces, intereses y experiencias representadas en la primera ola de organización de personas con discapacidad. Mientras tanto, una segunda ola emergente insta a un cambio de enfoque de la identidad de la discapacidad a los sistemas interconectados de dominación y explotación que dan forma a nuestra experiencia encarnada. A través de una interrogación críticamente reflexiva de la posición amorfa del autor, como un cuidador neurodivergente pero sin discapacidad convertido en profesional de la salud y estudioso de la discapacidad, este artículo explora la relación entre la identidad discapacitada, la pertenencia a la cultura de la discapacidad y el conocimiento experiencial. Una comprensión relacional de la discapacidad abre espacio para considerar la legitimidad y el valor de las identidades y perspectivas adyacentes a la discapacidad. Se consideran las limitaciones de los enfoques metodológicos participativos y se discute el potencial emancipador de la metodología etnográfica reflexiva.
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BARNES, Colin. An ethical agenda in disability research: Rhetoric or reality? In: MERTENS, Donna M.; GINSBERG, Pauline E. The handbook of social research ethics. Thousand Oaks: Sage, 2009. p. 458–473.
BRUEGGEMANN, Brenda. Think-between: a deaf studies commonplace book. In: BAUMAN, H-Dirksen L. Open your eyes: Deaf studies talking. Minneapolis: University of Minnesota Press, 2008. p. 35–41.
CHARLTON, James. Nothing about us without us: disability oppression and empowerment. Berkely: University of California Press, 2000.
COMBAHEE RIVER COLLECTIVE. The Combahee River Collective statement. In: TAYLOR, Keeanga-Yamahtta (Ed.). How we get free: Black feminism and the Combahee River Collective. Chicago: Haymarket Books, 2017. p. 15–27.
ELLIS, Carolyn; BOCHNER, Arthur P. Autoethnography, personal narrative, reflexivity: Researcher as subject. In: DENZIN, Norman K.; LINCOLN, Yvonna S. Collecting and interpreting qualitative materials. Thousand Oaks: Sage, 2003. p. 199–258.
GUILLEMIN, Marylis & GILLAM, Lynn. Ethics, reflexivity and ethically important moments in research. Qualitative Inquiry, v. 10, n. 2, p. 261–280, 2004. 10.1177/1077800403262360
HARDING, Sandra. Strong objectivity and socially situated knowledges. In: HARDING, Sandra. Whose science? Whose knowledge?: Thinking from women's lives. Ithaca: Cornell University Press, 1991. p. 138–163.
HUGHES, Bill; McKIE, Linda; HOPKINS, Debra; WATSON, Nick. Love’s labours lost? Feminism, the disabled people’s movement and an ethic of care. Sociology, v. 39, n. 2, p. 259–275, 2009. 10.1177/0038038505050538
KAFER, Alison. Feminist, queer, crip. Bloomington: Indiana University Press, 2013.
KATZMAN, Erika. Embodied reflexivity: Knowledge and the body in professional practice. In: GREEN, Bill; HOPWOOD, Nick. The body in professional practice, learning and education. Dordrecht: Springer, 2015. p. 157–172.
KATZMAN, Erika. The work of self-managing attendant services: a reflexive ethnographic study. [Unpublished doctoral dissertation] — London: The University of Western Ontario, 2018.
KATZMAN, Erika; KINSELLA, Elizabeth Anne. ‘It’s like having another job’: the invisible work of self-managing attendant services. Disability & Society, v. 33, n. 9, p. 1436–1459, 2018. 10.1080/09687599.2018.1497949
KATZMAN, Erika; KINSELLA, Elizabeth Anne; POLZER, Jessica. ‘Everything is down to the minute’: clock time, crip time and the relational work of self-managing attendant services. Disability & Society, v. 35, n. 4, p. 517–541, 2019. 10.1080/09687599.2019.1649126
KELLY, Christine. Building bridges with accessible care: disability studies, feminist care scholarship, and beyond. Hypatia, v. 28, n. 4, p. 784–800, 2013.
LATHER, Patti. Getting lost: feminist efforts toward a double(d) science. Albany: State University of New York Press, 2007.
LENNIE, June; HATCHER, Caroline; MORGAN, Wendy. Feminist discourses of (dis)empowerment in an action research project involving rural women and communication technologies. Action Research, v. 1, n. 1, p. 57–80, 2003. 10.1177/14767503030011005
LEWIS, Talila A. Working definition of ableism. January 2022 update. January 1, 2022. Available at: https://www.talilalewis.com/blog. Accessed on: April 13, 2023.
LEWIS, Talila A. Longmore lecture: context, clarity and grounding. March 5, 2019. Available at: https://www.talilalewis.com/blog/longmore-lecture-context-clarity-grounding. Accessed on: June 30, 2023.
LINTON, Simi. Claiming disability: knowledge and identity. New York: New York University Press, 1998.
LORDE, Audre. Sister outsider. Berkeley: Crossing Press, 2007 [1984].
McCABE, Janet L.; HOLMES, Dave. Reflexivity, critical qualitative research and emancipation: a Foucauldian perspective. Journal of Advanced Nursing, v. 65, n. 7, p. 1518–1526, 2009.
MILES, Angel L.; NISHIDA, Akemi; FORBER-PRATT, Anjali J. An open letter to White disability studies and ableist institutions of higher education. Disability Studies Quarterly, v. 37, n. 3, 2017.
NISHIDA, Akemi. Affecting neoliberal public health care: interdependent relationality between disabled care recipients and their care providers. [Unpublished doctoral dissertation] — New York: The City University of New York, 2016.
O’BYRNE, Patrick. The advantages and disadvantages of mixing methods: an analysis of combining traditional and autoethnographic approaches. Qualitative Health Research, v. 17, n. 10, p. 1381–1391, 2007.
PIEPZNA-SAMARASINHA, Leah Lakshmi. Care work: dreaming disability justice. Vancouver: Arsenal Pulp Press, 2018.
RICHARDSON, Laurel. Writing: a method of inquiry. In: DENZIN, Norman K.; LINCOLN, Yvonna S. Handbook of qualitative research. Thousand Oaks: Sage, 1994. p. 516–529.
SHAKESPEARE, Tom. Disability rights and wrongs. New York: Routledge, 2006.
SINS INVALID. Skin, tooth and bone: the basis of movement is our people. 2 ed. Berkeley: Sins Invalid, 2019.
STONE, Emma; PRIESTLEY, Mark. Parasites, pawns and partners: disability research and the role of nondisabled researchers. British Journal of Sociology, v. 47, n. 4, p. 699–716, 1996. 10.2307/591081
VORONKA, Jijian. The politics of ‘people with lived experience’: experiential authority and the risks of strategic essentialism. Philosophy, Psychiatry, & Psychology, v. 23, n. 3–4, p. 189–201, 2016. 10.1353/ppp.2016.0017
WEDGEWOOD, Nikki; SMITH, Louisa; SHUTTLEWORTH, Russel. ‘I employ a crew that can do life with me’: a young woman’s creative self- management of support workers. In: THOMAS, Gareth M.; SAKELLARIOU, Dikaios. Disability, Normalcy and the Everyday. London: Routledge, 2018. p. 123–141.
YOSHIDA, Karen; WILLI, Vic; PARKER, Ian; LOCKER, David. The emergence of self-managed attendant services in Ontario: direct funding pilot project – an independent living model for Canadians requiring attendant services. In: KRONENFELD, Jennie Jacobs (Ed.). Chronic Care, Health Care Systems and Services Integration. Research in the Sociology of Health Care, Volume 22. Bingley: Emerald Group Publishing Limited, 2004. p. 177–204. 10.1016/S0275-4959(04)22010-52004