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Articles

Consent as a relational engagement with children with intellectual disabilities—ethical conundrums and possibilities

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Pages 282-293 | Received 09 Jun 2021, Accepted 15 Mar 2022, Published online: 09 Apr 2022

References

  • Acker-Verney, J. M. (2016). Embedding intersectionality and reflexivity in research: Doing accessible and inclusive research with persons with disabilities. Third World Thematics: A TWQ Journal, 1(3), 411–424. https://doi.org/10.1080/23802014.2016.1235468
  • Adams, D., & Erevelles, N. (2017). Unexpected spaces of confinement: Aversive technologies, intellectual disability, and “bare life”. Punishment & Society, 19 (3), 1–17.
  • Alcoff, L. M. (2009). The problem of speaking for others. In A. Jackson & L. Mazzei (Eds.), Voice in qualitative inquiry: Challenging conventional, interpretive, and critical conceptions in qualitative research (pp. 117–135). Routledge.
  • Cocks, A. J. (2006). The ethical maze: Finding an inclusive path towards gaining children’s agreement to research participation. Childhood, 13(2), 247–266. https://doi.org/10.1177/0907568206062942
  • Collier, D. R. (2019). Re-imagining research partnerships: Thinking through “co-research” and ethical practice with children and youth. Studies in Social Justice, 13(1), 40–58. https://doi.org/10.26522/ssj.v13i1.1926
  • Costa, L., Voronka, J., Landry, D., Reid, J., Mcfarlane, B., Reville, D., & Church, K. (2012). “Recovering our stories”: A small act of resistance. Studies in Social Justice, 6(1), 85–101. https://doi.org/10.26522/ssj.v6i1.1070
  • Erevelles, N. (2000). Educating unruly bodies: Critical pedagogy, disability studies, and the politics of schooling. Educational Theory, 50(1), 25–47. https://doi.org/10.1111/j.1741-5446.2000.00025.x
  • Erevelles, N. (2013). Ch. 8. (Im)material citizens: Cognitive disability, race, and the politics of citizenship. In M. Wappett & K. Arndt (Eds.), Foundations of disability studies (pp. 145–176). Palgrave Macmillan.
  • Gallagher, K. (2018). Ch. 5. Love, time, reflexivity and the methodological imaginary. In K. Gallagher (Ed.), The methodological dilemma revisited: Creative, critical and collaborative approaches to qualitative research for a new era (1st ed., pp. 91–110). Routledge.
  • Gill, M., & Erevelles, N. (2017). The absent presence of Elsie Lacks: Hauntings at the intersection of race, class, gender, and disability. African American Review, 50(2), 123–137. https://doi.org/10.1353/afa.2017.0017
  • Goodley, D., & Runswick-Cole, K. (2012). Reading rosie: The postmodern disabled child. Narrative: Approaches in Research and Professional Practice, 29(2), 51–64.
  • Holland, K. (2007). The epistemological bias of ethics review: Constraining mental health research. Qualitative Inquiry, 13(6), 895–913. https://doi.org/10.1177/1077800407304469
  • Horgan, D. (2017). Child participatory research methods: Attempts to go ‘deeper’. Childhood, 24(2), 245–259. https://doi.org/10.1177/0907568216647787
  • Jones, C. T. (2021). “Wounds of regret”: Critical reflections on competence, “professional intuition,” and informed consent in research with intellectually disabled people. Disability Studies Quarterly, 41(2), 1–23. https://doi.org/10.18061/dsq.v41i2.6869
  • Karmiris, M. (2019). Disabling relationships: Exploring encounters in segregated special needs classrooms [Doctoral dissertation]. ProQuest Dissertations Publishing.
  • Kirby, P. (2020). ‘It’s never okay to say no to teachers’: Children’s research consent and dissent in conforming schools contexts. British Educational Research Journal, 46(4), 811–828. https://doi.org/10.1002/berj.3638
  • Lalvani, P., Broderick, A. A., Fine, M., Jacobowitz, T., & Michelli, N. (2015). Teacher education, in exclusion, and the implicit ideology of separate but equal: An invitation to a dialogue. Education. Education, Citizenship and Social Justice, 10(2), 168–186. https://doi.org/10.1177/1746197915583935
  • Liebowitz, C. (2015, March 20). I am disabled: On identity-first language versus person first language. The Body Is Not an Apology. https://thebodyisnotanapology.com/magazine/i-am-disabled-on-identity-first-versus-people-first-language/
  • MacLure, M. (2009). Broken voices, dirty words: On the productive insufficiency of voice. In A. Jackson & L. Mazzei (Eds.), Voice in qualitative inquiry: Challenging conventional, interpretive, and critical conceptions in qualitative research (pp. 97–113). Routledge.
  • Martino, A. S., & Schormans, A. F. (2018). When good intentions backfire: University research ethics review and the intimate lives of people labeled with intellectual disabilities. Forum Qualitative Sozialforschung/Forum: Qualitative Social Research, 19(3), 9.
  • Mitchell, D., & Snyder, S. (2003). The eugenic Atlantic: Race, disability, and the making of an international eugenic science, 1800–1945. Disability & Society, 18(7), 843–864. https://doi.org/10.1080/0968759032000127281
  • Moran-Ellis, J., & Tisdall, E. K. M. (2019). The relevance of ‘competence’ for enhancing or limiting children’s participation: Unpicking conceptual confusion. Global Studies of Childhood, 9(3), 212–223. https://doi.org/10.1177/2043610619860995
  • Myers, C. (2000). Wings. Scholastic Press.
  • Robson, K., & Maier, R. (2018, October 8). Research ethics: Are we minimizing harm or maximizing bureaucracy? University Affairs. https://www.universityaffairs.ca/opinion/in-my-opinion/research-ethics-are-we-minimizing-harm-or-maximizing-bureaucracy/
  • Rose, E. (2019). Neocolonial mind snatching: Sylvia Wynter and the curriculum of man. Curriculum Inquiry, 49(1), 25–43. https://doi.org/10.1080/03626784.2018.1554950
  • Rumford, J. (2008). Silent music: A story of Baghdad. Roaring Brook Press.
  • Shannon, D. (1998). No, David! (No. 1998). Scholastic Inc.
  • Simpson, A. (2007). On ethnographic refusal: Indigeneity, ‘voice’ and colonial citizenship. Junctures: The Journal for Thematic Dialogue, 9, 67–80.
  • Smith, L. T. (2012). Decolonizing methodologies: Research and indigenous peoples (2nd ed.). Zed Books.
  • Snelgrove, S. (2005). Bad, mad and sad: Developing a methodology of inclusion and a pedagogy for researching students with intellectual disabilities. International Journal of Inclusive Education, 9(3), 313–329.
  • Stephens, E., & Cryle, P. (2017). Eugenics and the normal body: The role of visual images and intelligence testing in framing the treatment of people with disabilities in the early twentieth century. Continuum, 31(3), 365–376. https://doi.org/10.1080/10304312.2016.1275126
  • Titchkosky, T. (2015). Life with dead metaphors: Impairment rhetoric in social justice praxis. Journal of Literary & Cultural Disability Studies, 9(1), 1–18. https://doi.org/10.3828/jlcds.2015.1
  • Tuck, E. (2009). Suspending damage: A letter to communities. Harvard Educational Review, 79(3), 409–428. https://doi.org/10.17763/haer.79.3.n0016675661t3n15
  • Tuck, E., & Yang, K. W. (2014a). R-words: Refusing research. Humanizing research: Decolonizing qualitative inquiry with youth and communities (pp. 223–248). https://static1.squarespace.com/static/557744ffe4b013bae3b7af63/t/557f2ee5e4b0220eff4ae4b5/1434398437409/Tuck+and+Yang+R+Words_Refusing+Research.pdf.
  • Tuck, E., & Yang, K. W. (2014b). Unbecoming claims: Pedagogies of refusal in qualitative research. Qualitative Inquiry, 20(6), 811–818. https://doi.org/10.1177/1077800414530265
  • Voronka, J., & Costa, L. (2019). Disordering social inclusion: Ethics, critiques, collaborations, futurities. Special Issue of Journal of Ethics in Mental Health, 10(1), 1–10.

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