
The Necessity of Unsettling Encounters in Collaborative Research – Reflections of Two Researchers without Experiential Expertise
By: Sebastian von Peter and Gustaaf F. Bos
References
- Abma, T.A., Banks, S., Cook, T., Dias, S., Madsen, W., Springett, J., & Wright, M. (2019). Participatory research for health and social well-Being. Springer.
- Adams, T.E. (2008). A review of narrative ethics. Qualitative Inquiry, 14(2), 175–194. 10.1177/1077800407304417
- Banks, S. (2013). Negotiating personal engagement and professional accountability: Professional wisdom and ethics work. European Journal of Social Work, 16(5), 587–604. 10.1080/13691457.2012.732931
- Banks, S. (2016). Everyday ethics in professional life: social work as ethics work. Ethics and Social Welfare, 10(1), 35–52. 10.1080/17496535.2015.1126623
- Banks, S. & Brydon-Miller, M. (Eds). (2019). Ethics in participatory research for health and social well-being: Cases and commentaries. Routledge.
- Barnes, C. (1996). Disability and the myth of the independent researcher. Disability & Society, 11(1), 107–110. 10.1080/09687599650023362
- Barnes, C. (2003). What a difference a decade makes: Reflections on doing ‘emancipatory’ disability research. Disability & Society, 18(1), 3–17. 10.1080/713662197
- Belenky, M.F., Clinchy, B.M., Goldberger, N.R. & Tarule, J.M. (1986). Women’s ways of knowing: The development of self, voice, and mind. Basic Books.
- Bigby, C., Frawley, P., & Ramcharan, P. (2014). A collaborative group method of inclusive research. Journal of Applied Research in Intellectual Disabilities, 27(1), 54–64. 10.1111/jar.12082
- BMBF (2016). Grundsatzpapier des Bundesministeriums für Bildung und Forschung zur partizipation [Position paper from the Ministry for Education and Research concerning participation].
https://vdivde-it.de/sites/default/files/document/BMBF_grundsatzpapier_partizipation_barrierefrei.pdf - Boevink, W. (2017). Planting a tree: On recovery, empowerment, and experiential expertise in psychiatry. Trimbos Instituut/Netherlands Institute of Mental Health and Addiction,
https://www.trimbos.nl/docs/e5b58bcc-d191-4b8a-9113-7b9cdbb92624.pdf - Bos, G.F. (2016). Antwoorden op andersheid. Over ontmoetingen tussen mensen met en zonder verstandelijke beperking in omgekeerde-integratiesettingen. [Responding to otherness: About encounters between people with and without intellectual disabilities in ‘reversed integration’ settings] [Doctoral dissertation]. Amsterdam: VU University.
https://research.vu.nl/en/publications/antwoorden-op-andersheid-over-ontmoetingen-tussen-mensen-met-en-z - Bos, G.F. & Abma, T.A. (2021). Putting down verbal and cognitive weaponry: The need for ‘experimental-relational spaces of encounter’ between people with and without severe intellectual disabilities. Disability & Society. Advance online publication. 10.1080/09687599.2021.1899896
- Bos, G.F., & Kal, D. (2016). The value of inequality. Social Inclusion, 4(4), 129–139. 10.17645/si.v4i4.689
- Boumans, J. (2012).
Het subject als maatstaf? Een essay over de valkuilen van het onderzoek naar ervaringskennis. [The subject as measuring stick? An essay on the pitfalls of research into experiential expertise.] In J. Jansen, (red.), T. Dobbelaar (red.), Zie meer, kijk anders. Tien jonge wetenschappers over disability studies (pp. 71–85). [See more, look differently: Ten young scientists on disability studies.] ZonMw. - Bradbury, H. (2015).
Introduction: How to situate and define action research . In H. Bradbury (Ed.), The SAGE handbook of action research (pp. 1–9). Sage. - Broznan, L. (2019). The lion’s den: The epistemic dimension of invisible emotional Labour in service-user involvement spaces. Journal of Ethics in Mental Health, Special Theme Issue VI: Disordering Social Inclusion: Ethics, Critiques, Collaborations, Futurities, 10, 1–14.
https://jemh.ca/issues/v9/documents/JEMH%20Inclusion%20xi.pdf - Campbell, F. K. (2019). Precision ableism: A studies in ableism approach to developing histories of disability and abledment. Rethinking History, 23(2), 138–156. 10.1080/13642529.2019.1607475
- Carr, S. (2019). ‘I am not your nutter’: a personal reflection on commodification and comradeship in service user and survivor research. Disability & Society, 34(7-8), 1140–1153. 10.1080/09687599.2019.1608424
- Chalachanová, A., Nind, M., Østby, M., Power, A., Tilley, L., Walsmley, J. (2020). Building relationships in inclusive research in diverse contexts. Scandinavian Journal of Disability Research, 22(1), 147–157. 10.16993/sjdr.681
- Chamberlin, J. (2005). User/consumer involvement in mental health service delivery. Epidemiologia e Psychiatria Sociale, 14(1), 10–15. 10.1017/S1121189X00001871
- Chapman, C. (2014).
How I came to accept restraining and confining disabled Aboriginal children . In B. Burstow, B. Lefrancois, & S. Diamon [Eds], Psychiatry disrupted: Theorizing resistance and crafting the (r)evolution. Queens University Press. - Church, K. (2008).
Exhibiting as inquiry: Travels of an accidental curator . In J.G. Knowles & A.L. Cole (Eds.), Handbook of the arts in qualitative research: Perspectives, methodologies, examples, and issues (pp. 421–434). Sage. - Church, K. (1995). Forbidden narratives: Critical autobiography as social science. Routledge.
- Davidow, S. (2020, January 11). Power means: Never say you’re sorry. Mad in America: Science, psychiatry and social justice.
https://www.madinamerica.com/2020/01/power-means-never-say-youre-sorry/ - De Schauwer, E., Daelman, S., Vandenbussche, H., Sergeant, S., Van de Putte, I., & Davies, B. (2021). Desiring and critiquing humanity/ability/personhood: disrupting the ability/disability binary. Disability & Society, 36(2), 286–305. 10.1080/09687599.2020.1735306
- Denzin, N. (2000).
The practices and politics of interpretation . In N. Denzin and Y. Lincoln (Eds), Handbook of qualitative research, (pp. 897–922). Sage. - Ellis, C. (2004). The ethnographic I: A methodological novel about autoethnography. Altamira Press.
- Embregts, P., Tamianiau, E., Heerkens, L., Schippers, A. & van Hove, G. (2018). Collaboration in inclusive research: Competencies considered important for people with and without intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities 15(3), 193–201. 10.1111/jppi.12248
- Feder-Kittay, E. (2009). The personal is philosophical is political: A philosopher and mother of a cognitively disabled person sends notes from the battlefield. Metaphilosophy, 40(3–4), 606–627. 10.1111/j.1467-9973.2009.01600.x
- Frankena, T.K. (2019). Optimizing inclusive health research. Meaningful collaboration with people with intellectual disabilities [Doctoral Dissertation], Radboud UMC.
https://0da93f8e-6ee7-45d9-be21-eecb55ca3e69.filesusr.com/ugd/01fbc4_06f4528f53c84e7ea958d7a309321645.pdf - Frankena, T. K., Naaldenberg, J., Cardol, M., & Garcia Iriarte, E. e.a. (2019). A consensus statement on how to conduct inclusive health research. Journal of Intellectual Disability Research, 63(1), 1–11. 10.1111/jir.12486
- Frankena, T.K., Naaldenberg, J., Cardol, M., Linehan, C., & van Schrojenstein Lantman-de Valk, H. (2015). Active involvement of people with intellectual disabilities in health research: A structured literature review. Research in Developmental Disabilities, 45-46, 271–283. 10.1016/j.ridd.2015.08.004
- Gergen, K.J. (2012). An invitation to social construction (2nd ed.). Sage.
- Gilbert, T. (2004). Involving people with learning disabilities in research: Issues and possibilities. Health and Social Care in the Community, 12(4), 298–308. 10.1111/j.1365-2524.2004.00499.x
- Gillard, S., Borschmann, R., Turner, K., Goodrich-Prunell, N., Lovell, K., & Chambers, M. (2010), ‘What difference does it make?’ Finding evidence of the impact of mental health service user researchers on research into the experiences of detained psychiatric patients. Health Expectations, 13(2), 185–194. 10.1111/j.1369-7625.2010.00596.x
- Gillard, S., Turner, K., & Gibson, K. (2013). Balancing good research with good mental health: A step-by-step guide to employing and supporting service user researchers. National Institute for Health Research.
http://www.rds-sw.nihr.ac.uk/documents/NIHR_MHRN_Involving_Mental_Health_Problems_Research2013.pdf - Green, G. (2016). Power to the people: to what extent has public involvement in applied health research achieved this? Research Involvement and Engagement, 2(1), 1–13. 10.1186/s40900-016-0042-y
- Groot, B. & Abma, T.A. (2019).
Partnership, collaboration, and power . In S. Banks & M. Brydon-Miller (Eds.), Ethics in participatory research for health and social well-being: Cases and commentaries (pp. 103–130). Routledge. - Guba, E.G. & Lincoln, Y.S. (1989). Fourth generation evaluation. Sage.
- Habermas, J. (1981/1995). Theorie des kommunikativen Handelns (Vol. I: Handlungs-rationalität und gesellschaftliche Rationalisierung). [Theory of communicative action (Vol 1: Action rationality and societal rationalisation)]. Suhrkamp.
- Happell, B., Gordon, S., Bocking, J., Ellis, P., Roper, C., Liggins, J., Platania, C., & Scholz, B. (2018). How did I not see that? Perspectives of nonconsumer mental health researchers on the benefits of collaborative research with consumers. International Journal of Mental Health Nursing, 27(84), 1230–1239. 10.1111/inm.12453
- Happell, B., & Scholz, B. (2018). Doing what we can, but knowing our place: Being an ally to promote consumer leadership in mental health. International Journal of Mental Health Nursing, 27(1), 440–447. 10.1111/inm.12404
- Hochschild, A.R. (1983). The managed heart: Commercialization of human feeling. University of California Press.
- Hosking, D.M. & Bouwen, R. (2000). Organizational learning: Relational-constructionist approaches. An overview. European Journal of Work and Organizational Psychology, 9(2), 129–132. 10.1080/135943200397897
- ICPHR – International Collaboration for Participatory Health Research (2013). Position paper 1: What is participatory health research? International Collaboration for Participatory Health Research.
- Jones, N., & Cutler, E. (2018, July 2). “The angry consumer”: Embracing difficult conversations. Mad in America: Science, psychiatry and social justice.
https://www.madinamerica.com/2018/07/angry-consumer-emotions/ - King, C., & Gillard, S. (2019). Bringing together coproduction and community participatory research approaches: Using first person reflective narrative to explore coproduction and community involvement in mental health research. Health Expectations, 22(4), 701–708. 10.1111/hex.12908
- Kunneman, H. (2017). Amor complexitatis. Bouwstenen voor een kritisch humanisme. Deel 2. [Amor complexitatis: Building blocks for a critical humanism. Part 2.]. Humanistic University Press.
- Lambert, N., & Carr, S. (2018). ‘Outside the Original Remit’: Co-production in UK mental health research, lessons from the field. International Journal of Mental Health Nursing, 27(4), 1273–1281. 10.1111/inm.12499
- Leget, C., Van Nistelrooij, I. & Visse, M. (2017). Beyond demarcation: Care ethics as an interdisciplinary field of inquiry, Nursing Ethics, 26(1), 1–9. 10.1177/0969733017707008
- Lincoln, Y.S. & Guba, E.G. (1985). Naturalistic Inquiry. Sage.
- Lincoln, Y.S. & Guba E.G. (1986).
But is it rigorous? Trustworthiness and authenticity in naturalistic evaluation . In D.D. Williams (Ed.), Naturalistic evaluation: New directions for program evaluation, (pp. 73–84). Yossey-Bass. - Lutz, K., Offergeld, J., Freymuth, N., Arp, A.L., Benz, B., Schönig, B & Walther, K. (2020). Gemeinsam Forschung gestalten – Handreichung zur partizipativen Forschung. [Shaping shared research – Manual for participatory research].
https://www.s-inn.net/fileadmin/redaktion/bilder/SOWILA/Handreichung_Gemeinsam_Forschung_gestalten.pdf - Lyotard, J.F. (1988). The differend: Phrases in dispute. University of Minnesota Press.
- Maccarthy, J., Guerin, S., Wilson, A.G., & Dorris, E.R. (2019). Facilitating public and patient involvement in basic and preclinical health research. PLoS ONE, 14(5):
e0216600 . 10.1371/journal.pone.0216600 - Madison, D.S. (2005). Critical ethnography: Method, ethics, and performance. Sage.
- Merleau-Ponty, M. (1962). Phenomenology of perception. (C. Smith, Trans.). Routledge. (Original work published 1945).
- MHRN (2013). Good practice guidance for involving people with experience of mental health problems in research. National Institute for Health Research Clinical Research Network.
http://www.rds-sw.nihr.ac.uk/documents/NIHR_MHRN_Involving_Mental_Health_Problems_Research2013.pdf - Moss, C., Warner, T., Happell, B., & Scholz, B. (2021). Motivations for allyship with mental health consumer movements. Qualitative Research in Psychology, 18(4), 601–618. 10.1080/14780887.2020.1718814
- Muhammad, M., Wallerstein, N., Sussman, A. L., Avila, M., Belone, L., & Duran, B. (2014). Reflections on researcher identity and power: The impact of positionality on community based participatory research (CBPR) processes and outcomes. Critical Sociology, 41(7–8), 1045–1063. 10.1177/0896920513516025
- Nierse, C. & Abma, T. A. (2011). Developing voice and empowerment: The first step towards a broad consultation in research agenda setting. Journal of Intellectual Disability Research, 55(4), 411–21. 10.1111/j.1365-2788.2011.01388.x
- Nind, M. (2014). What is inclusive research? Bloomsbury.
- Nind, M. (2017). The practical wisdom of inclusive research. Qualitative Research, 17(3), 278–288. 10.1177/1468794117708123
- Peels, H. (2019, Aug. 7). Experiences in belonging. [Paper]. IASSIDD Conference, Glasgow.
- Pharos (2020). Infosheet Inclusief onderzoek [Info sheet Inclusive research]. Pharos National Expertise Centre on Health differences.
https://www.pharos.nl/infosheets/inclusief-onderzoek/ - Puyalto, C., Pallisera, M., Fullana, J., & Vila, M. (2016). Doing research together: A study on the views of advisors with intellectual disabilities and non-disabled researchers collaborating in research. Journal of Applied Research in Intellectual Disabilities, 29, 146–159. 10.1111/jar.12165
- Rose, D. (2017). Service user/survivor-led research in mental health: Epistemological possibilities. Disability & Society, 37(6), 773–789. 10.1080/09687599.2017.1320270
- Rose, D. (2018). Participatory research: Real or imagined. Social Psychiatry and Psychiatric Epidemiology, 53, 765–771. 10.1007/s00127-018-1549-3
- Russo, J. (2012). Survivor-controlled research: A new foundation for thinking about psychiatry and mental health [95 paragraphs]. Forum Qualitative Sozialforschung/Forum: Qualitative Social Research, 13(1),
Art. 8 . 10.17169/fqs-13.1.1790 - Russo, J., & Beresford, P. (2014). Between exclusion and colonisation: Seeking a place for mad people’s knowledge in academia. Disability & Society, 30(1), 153–157. 10.1080/09687599.2014.957925
- Sandvoort, H. (2017). Vlog: Terugblik congres in Leuven. Het verslag – in het lang en in het breed – van het congres in Leuven. [Extensive report from the Leuven congress]. Retrieved on September 30th, 2019, from
https://www.kennispleingehandicaptensector.nl/nieuws/vlog-congres-leuven-netwerk-samen-werken-samen-leren - Scholz, B., Roper, C., Juntanamalaga, P., & Happell, B. (2019). Understanding the role of allies in systemic consumer empowerment: A literature review. Issues in Mental Health Nursing, 20(4), 354–361. 10.1080/01612840.2018.1553004
- Schön, D. (1983). The Reflective Practitioner. Ashgate Publishing Limited.
- Sergeant, S. & Sandvoort, H. (2019, May 26). ‘Zet uw hulpverlenersknop uit!’ [Switch of your caregivers switch]. Kennisplein gehandicaptensector.
https://www.kennispleingehandicaptensector.nl/nieuws/ervaringskennis-vlog-netwerk-samen-werken-samen-leren - Smaling, A. (2008). Dialoog en empathie in de methodologie [Dialogue and empathy in methodology]. SWP.
- Spandler, H. (August 22, 2018). Uncomfortable relations: Reflections on learning from psychiatric survivors. Mad in America: Science, Psychiatry and Social Justice.
https://www.madinamerica.com/2018/08/uncomfortable-relations-reflections-on-learning-from-psychiatric-survivors/ - Stake, R.E. (1975).
To evaluate an arts program . In R.E. Stake (Ed.), Evaluating the arts in education: A responsive approach. Merril. - Stony Brook University (2010, December 6). Provost lecture – Bernhard Waldenfels: Response and trust: Some aspects of responsive ethics. [Video]. Youtube.
https://www.youtube.com/watch?v=t6iOsQ_ho94 - Stuhlfauth, S., Knutzsen, I., Foss, C. (2019). Coming from two different worlds: A qualitative, exploratory study of the collaboration between patient representatives and researchers. Health Expectations, 22(3), 496–503. 10.1111/hex.12875
- Sweeney, A., & Morgan, L. (2009).
The levels and stages of service user/survivor involvement in research . In J. Wallcraft, B. Schrank, & M. Amering (Eds.), Handbook of service user involvement in mental health research. Wiley-Blackwell. - Tervalon, M. & Murray-García, J. (1998). Cultural humility versus cultural competence: A critical distinction in defining physician training outcomes in multicultural education. Journal of Healthcare for the Poor and Underserved, 9(2), 117–125. 10.1353/hpu.2010.0233
- Thompson, E., & Varela, F.J. (2001). Radical embodiment: Neural dynamics and consciousness. Trends in Cognitive Sciences, 5(10), 418–425. 10.1016/S1364-6613(00)01750-2
- Tillmann-Healy, L.M. (2003). Friendship as method. Qualitative Inquiry, 9(5), 729–749. 10.1177/1077800403254894
- Tillmann-Healy, L.M. & Kiesinger, C. (2001).
Mirrors: Seeing each other and ourselves through fieldwork . In K. Gilbert (Ed.), The emotional nature of qualitative research, (pp. 81–108). CRC Press. - Tronto, J.C. (1993). Moral boundaries: A political argument for an ethic of care. Routledge.
- Van der Lans, J. (2019). Niet-normaal. Ontwikkelingen en dilemma’s in de Nederlandse gehandicaptenzorg (pp. 197–208). [Abnormal. Developments and dilemma’s in the Dutch care for people with intellectual disabilities]. De Graaff.
- Van Manen, M., & Li, S. (2002). The pathic principle of pedagogical language. Teaching and Teacher Education, 18, 215–224. 10.1016/S0742-051X(01)00065-8
- von Peter, S. (2017). Partizipative und kollaborative forschungsansätze in der psychiatrie [Participatory and collaborative strategies in psychiatric Research]. Psychiatrische Praxis, 44(8), 431–43. 10.1055/s-0043-120241
- Voronka, J. (2016). The politics of ‘people with lived experience’: Experiential authority and the risks of strategic essentialism. Philosophy, Psychiatry, and Psychology, 23(3/4), 189–201. 10.1353/ppp.2016.0017
- Wakeford, T. & Sanchez Rodriguez, J. (2018).
Participatory action research: Towards a more fruitful knowledge . In L. Facer, L. & K. Dunleavy (Eds.), Connected communities foundation series. University of Bristol/AHRC Connected Communities Programme. - Waldenfels, B. (2011). In place of the other. Continental Philosophy Review, 44, 151–164. 10.1007/s11007-011-9180-y
- Walmsley, J. (2001). Normalisation, emancipatory research and inclusive research in learning disability. Disability and Society, 16(2), 187–205. 10.1080/09687590120035807
- Walmsley, J. (2004). Inclusive learning disability research: The (nondisabled) researcher’s role. British Journal of Learning Disabilities, 32, 65–71. 10.1111/j.1468-3156.2004.00281.x
- Walmsley, J., & Johnson, K. (2003). Inclusive research with people with learning disabilities: Past, present and futures. Jessica Kingsley Publishers.
- Wildhood, M. (2019, August 15). In defense of anger. Mad in America: Science, psychiatry and social justice.
https://madinamerica.com/2019/08/in-defense-of-anger/ - Woelders, S. (2020). Power-ful patient participation: Opening spaces for silenced knowledge [Doctoral dissertation]. VU University.
https://research.vu.nl/en/publications/power-full-patient-participation-opening-spaces-for-silenced-know - Woelders, S., Abma, T.A., Visser, T. & Schipper, K. (2015). The power of inclusive research. Disability & Society, 30(4), 528–542. 10.1080/09687599.2015.1031880
- Wright, M., & Kongats, K. (2019). Participatory Health Research-Voices from around the World. Springer.
- Young, I.M. (1997). Asymmetrical reciprocity: On moral respect, wonder, and enlarged thought. Constellations, 3(3), 340–363. 10.1111/j.1467-8675.1997.tb00064.x
DOI: https://doi.org/10.33596/coll.78 | Journal eISSN: 2638-4396
Language: English
Page range: 4 - 4
Published on: Jan 27, 2022
Published by: University of Miami Libraries
In partnership with: Paradigm Publishing Services
Keywords:
© 2022 Sebastian von Peter, Gustaaf F. Bos, published by University of Miami Libraries
This work is licensed under the Creative Commons Attribution 4.0 License.