Narratives on inclusion-exclusion in university students with disabilities in the city of Temuco (Chile)
Abstract The purpose of this paper is to analyze the narratives about the inclusion-exclusion of university students with disabilities in the city of Temuco, Chile. Therefore, it was decided to reconstruct the university experience of young people through the biographical-narrative method as it offers insight to give meaning and understand the cognitive, affective and action aspects of students with disabilities. In the same way, for the purposes of this paper a discourse analysis model has been formulated based on the theoretical-methodological proposals proposed by Gilberto Giménez (1989) that guide the work with the corpus obtained for the present study. Consequently, the analysis of the corpus allows us to describe and highlight that each experience should not be treated as an expression of a unique thought, since disability is not a standard situation and each case enriches its very notion based on its particularities. Finally, the students who agreed to share their stories reinforce the importance for them of both family context, institutionalization and the role of friendships; same that acquire the role of thematic axes from which topics emerge, as well as implications around the inclusion-exclusion binomial.
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Appleton-Dyer, S. y Field, A. (2014). Understanding the factors that contribute to social exclusion of disabled people. Rapid review for think differently. Auckland: Synergia.
Atkinson, P. (1997). Narrative turn or blind alley? Qualitative Health Research, 7, 325-343. https://doi.org/10.1177/104973239700700302
Barton, L. (2003). Inclusive education and teacher education. A basis for hope or a discourse for delusion. London: Institute of Education, University of London.
Bell, S. E. (1999). Narratives and lives: women's health politics and the diagnosis of cancer for DES daughters. Narrative Inquiry, 9(2), 1-43. https://doi.org/10.1075/ni.9.2.08bel
Bochner, A. (2001). Narratives virtues. Qualitative Inquiry, 7(2), 131-157. https://doi.org/10.1177/107780040100700201
Bolívar, A., Segovia, D. y Fernández Cruz, M. (2001). La investigación biográfico-narrativa en educación. Enfoque y metodología. Madrid: Muralla.
Booth, T. y Ainscow. M. (2002). Index for inclusion. Developing leaning and participation in schools (2.ª ed.). Manchester: CSIE.
Bruner, J. (2002). Making stories. Law, literature, life. New York: Farrar, Strauss and Giroux.
Centre for the Study of Inclusive Education (CSIE) (1996). Developing an inclusive policy for your school: a CSIE Guide. London: CSIE.
Cornejo, M., Faúndez, X. y Besoain, C. (2017). El análisis de datos en enfoques biográficos-narrativos: desde los métodos hacia una intencionalidad analítica. Forum: Qualitative Social Research, 18(1), 2-26.
Council for Exceptional Children (CEC) (1994). 12 Principles for successful inclusive schools. CEC Today Newsletter (Council for Exceptional Children), May.
Crossley, M. L. (2003). Formulating narrative psychology: the limitations of contemporary social constructionism. Narrative Inquiry, 13(2), 287-300. https://doi.org/10.1075/ni.13.2.03cro
Freund, P. (2001). Bodies, disability and spaces: the social model and disabling spatial organisation. Disability y Society, 16(5), 689-706. https://doi.org/10.1080/09687590120070079
Fuller, M., Bradley, A. y Healey, M. (2004). Incorporating disabled students within an inclusive higher education environment. Disability y Society, 19(5), 455-468. https://doi.org/10.1080/0968759042000235307
Gibson, S. (2012). Narrative accounts of university education: socio-cultural perspectives of students with disabilities. Disability y Society, 27(3), 353-369. https://doi.org/10.1080/09687599.2012.654987
Giménez, G. (1989). Poder, estado y discurso. Perspectivas sociológicas y semiológicas del discurso político-jurídico. México: UNAM.
Goodley, D. (2001). 'Learning difficulties', the social model of disability and impairment: Challenging epistemologies. Disability y Society, 16(2), 207-231. https://doi.org/10.1080/09687590120035816
Goodley, D. y Tragaskis, C. (2006). Storying disability and impairment: retrospective accounts of disabled family life. Qualitative Health Research, 16(5), 630-646. https://doi.org/10.1177/1049732305285840
Hinchman, L. P. e Hinchman, S. K. (Eds.) (1997) Memory, identity, community: the idea of narrative in the human sciences. Albany, NY: State University of NY Press.
Huchim Aguilar, D. y Reyes Chávez, R. (2013). La investigación biográfico-narrativa, una alternativa para el estudio de los docentes. Revista Electrónica Actualidades Investigativas en Educación, 13(3), 1-27. https://doi.org/10.15517/aie.v13i3.12026
Lars-Christer, H. y Antelius, E. (2011). Communicative disability and stories: towards an embodied conception of narratives, Health, 15(6), 588-603. https://doi.org/10.1177/1363459310364158
Manning, M. y Rymes, B. (2005). Living narrative: creating lives in everyday storytelling. Language in Society, 34(3), 470-474. https://doi.org/10.1017/S004740450522016X
Marshall, M. (1996). Sampling for qualitative research. Family Practice, 13(6), 522-525. https://doi.org/10.1093/fampra/13.6.522
Milner, P., Bray, A., Cleland, G., Taylor, J., Entwisle, R. y Wilson, P. (2004). Community participation: people with disabilities finding their place. Dunedin: Donald Beasley Institute y NZCCS.
Milner, P. y Kelly, B. (2009). Community participation and inclusion: people with disabilities defining their place. Disability and Society, 24(1), 47-62. https://doi.org/10.1080/09687590802535410
Ministerio de Educación (Mineduc) (2011). Orientaciones para dar respuestas educativas a la diversidad y a las necesidades educativas especiales. Recuperado de http://especial.mineduc.cl/wp-content/uploads/sites/31/2016/09/201404021642530.ORIENTACIONES_RESPUESTAS_A_LA_DIVERSIDAD.pdf.
Ministerio de Educación (Mineduc) (2019). ¿Qué sabemos sobre admisión a la educación superior? Una revisión para implementación del nuevo Sistema de Acceso en Chile. Santiago: Ministerio de Educación.
Mishler, E. G. (1995). Models of narrative analysis: a typology. Journal of Narrative and Life History, 5(2), 87-123. https://doi.org/10.1075/jnlh.5.2.01mod
Organización de las Naciones Unidas (ONU) (2006). Convención sobre los Derechos de las Personas con Discapacidad. Recuperado de https://www.ohchr.org/Documents/Publications/AdvocacyTool_sp.pdf.
Patton, M. (2002). Qualitative research and evaluation methods. 3.ª ed. Thousand Oaks: Sage Publications.
Programa Inclusivo de Acceso y Acompañamiento para Estudiantes en Situación de Discapacidad (PIAA) (2019). Quiénes somos. Recuperado de http://piaa.ufro.cl/.
Razer, M., Friedman, V. y Warshofsky, B. (2013). Schools as agents of social exclusion and inclusion. International Journal of Inclusive Education, 17. https://doi.org/10.1080/13603116.2012.742145
Riesmann, C. (1993). Narrative analysis. London: Sage.
Riesmann, C. (2005). Narrative analysis. London: Sage.
Rizo López, A. E. (2006). ¿A qué llamamos exclusión social? Polis [En línea], 15 | 2006. URL: http://journals.openedition.org/polis/5007.
Ross, N. J., Renold, E., Holland, S. y Hillman, A. (2009). Moving stories: using mobile methods to explore the everyday lives of young people in public care. Qualitative Research, 9(5), 605-623. https://doi.org/10.1177/1468794109343629
Sanz Hernández, A. (2005). El método biográfico en investigación social: potencialidades y limitaciones de las fuentes orales y los documentos personales. Asclepio, LVII, 99-115. https://doi.org/10.3989/asclepio.2005.v57.i1.32
Servicio Nacional de la Discapacidad (Senadis) (2016). Segundo estudio nacional de la discapacidad 2015. Informe metodológico. Recuperado de file:///C:/Users/cyd/Downloads/Informe%20Metodologico%20II%20Estudio%20Nacional%20de%20la%20Discapacidad%20(1).pdf [Consultado 31-12-2018].
Servicio Nacional de la Discapacidad (Senadis) (2017). Región de la Araucanía. Recuperado de https://www.senadis.gob.cl/region/araucania/d/noticias/7043/senadis-lanza-el-programa-de-apoyo-a-estudiantes-en-situacion-de-discapacidad-en-instituciones-de-educacion-superior-2018 [Consultado 31-12-2018].
Servicio Nacional de la Discapacidad (Senadis) (2018). Balance de gestión integral. Año 2017. Recuperado de https://www.senadis.gob.cl.
Smith, B. y Sparkes, A. C. (2005). Analyzing talk in qualitative inquiry: exploring possibilities, problems, and tensions. Quest, 57, 213-242. https://doi.org/10.1080/00336297.2005.10491854
Smith, B. y Sparkes, A. C. (2008). Narrative and its potential contribution to disability studies. Disability y Society, 23(1), 17-28. https://doi.org/10.1080/09687590701725542
Smith, B. y Sparkes, A. C. (2012). Introduction. An invitation to qualitative research. En K. Young y M. Atkinson (Eds.), Qualitative research on sport and physical culture. Bingley, UK: Emerald.
Soriano, F. y López, L. (2009). Discapacidad y cultura: desafío emergente en investigación. Avances en Enfermería, 27(1), 110-123. Recuperado de https://revistas.unal.edu.co/index.php/avenferm/article/view/12960/13678.
Sparkes, A. C. (2004). Bodies, narratives, selves and autobiography: the example of Lance Armstrong. Journal of Sport and Social Issues, 28, 397- 428. https://doi.org/10.1177/0193723504269907
Sparkes, A. C. (2005). Narrative analysis: exploring the whats and the hows of personal stories. En M. Holloway (Ed.), Qualitative research in health care. Open University Press. PMCid: PMC1255988.
Sparkes, A. C. y Smith, B. (2003). Men, sport, spinal cord injury and narrative time. Qualitative Research, 3, 295-320. https://doi.org/10.1177/1468794103033002
Universidad de Chile (2016). Inclusión de estudiantes en situación de discapacidad en la Universidad de Chile: un compromiso con la equidad. 31 de diciembre de 2018, de Universidad de Chile Sitio web: file:///C:/Users/verel/Downloads/inclusion%20de%20estudiantes%20en%20situacion%20de%20discapacidad%20en%20la%20universidad%20de%20chile%20un%20compromiso%20con%20la%20equidad.pdf.
Uprichard, E. y Byrne, D. (2006). Representing complex places: a narrative approach. Environment and Planning A: Economy and Space, 38(4), 665-676. https://doi.org/10.1068/a37333
Waldschmidt, A. (2017). Disability Goes Cultural: The Cultural Model of Disability as an Analytical Tool. En A. Waldschmidt, H. Berressem y M. Ingwersen (Eds.), Culture - Theory - Disability: Encounters between Disability Studies and Cultural Studies. Bielefeld: Transcript Verlag. https://doi.org/10.14361/9783839425336
Atkinson, P. (1997). Narrative turn or blind alley? Qualitative Health Research, 7, 325-343. https://doi.org/10.1177/104973239700700302
Barton, L. (2003). Inclusive education and teacher education. A basis for hope or a discourse for delusion. London: Institute of Education, University of London.
Bell, S. E. (1999). Narratives and lives: women's health politics and the diagnosis of cancer for DES daughters. Narrative Inquiry, 9(2), 1-43. https://doi.org/10.1075/ni.9.2.08bel
Bochner, A. (2001). Narratives virtues. Qualitative Inquiry, 7(2), 131-157. https://doi.org/10.1177/107780040100700201
Bolívar, A., Segovia, D. y Fernández Cruz, M. (2001). La investigación biográfico-narrativa en educación. Enfoque y metodología. Madrid: Muralla.
Booth, T. y Ainscow. M. (2002). Index for inclusion. Developing leaning and participation in schools (2.ª ed.). Manchester: CSIE.
Bruner, J. (2002). Making stories. Law, literature, life. New York: Farrar, Strauss and Giroux.
Centre for the Study of Inclusive Education (CSIE) (1996). Developing an inclusive policy for your school: a CSIE Guide. London: CSIE.
Cornejo, M., Faúndez, X. y Besoain, C. (2017). El análisis de datos en enfoques biográficos-narrativos: desde los métodos hacia una intencionalidad analítica. Forum: Qualitative Social Research, 18(1), 2-26.
Council for Exceptional Children (CEC) (1994). 12 Principles for successful inclusive schools. CEC Today Newsletter (Council for Exceptional Children), May.
Crossley, M. L. (2003). Formulating narrative psychology: the limitations of contemporary social constructionism. Narrative Inquiry, 13(2), 287-300. https://doi.org/10.1075/ni.13.2.03cro
Freund, P. (2001). Bodies, disability and spaces: the social model and disabling spatial organisation. Disability y Society, 16(5), 689-706. https://doi.org/10.1080/09687590120070079
Fuller, M., Bradley, A. y Healey, M. (2004). Incorporating disabled students within an inclusive higher education environment. Disability y Society, 19(5), 455-468. https://doi.org/10.1080/0968759042000235307
Gibson, S. (2012). Narrative accounts of university education: socio-cultural perspectives of students with disabilities. Disability y Society, 27(3), 353-369. https://doi.org/10.1080/09687599.2012.654987
Giménez, G. (1989). Poder, estado y discurso. Perspectivas sociológicas y semiológicas del discurso político-jurídico. México: UNAM.
Goodley, D. (2001). 'Learning difficulties', the social model of disability and impairment: Challenging epistemologies. Disability y Society, 16(2), 207-231. https://doi.org/10.1080/09687590120035816
Goodley, D. y Tragaskis, C. (2006). Storying disability and impairment: retrospective accounts of disabled family life. Qualitative Health Research, 16(5), 630-646. https://doi.org/10.1177/1049732305285840
Hinchman, L. P. e Hinchman, S. K. (Eds.) (1997) Memory, identity, community: the idea of narrative in the human sciences. Albany, NY: State University of NY Press.
Huchim Aguilar, D. y Reyes Chávez, R. (2013). La investigación biográfico-narrativa, una alternativa para el estudio de los docentes. Revista Electrónica Actualidades Investigativas en Educación, 13(3), 1-27. https://doi.org/10.15517/aie.v13i3.12026
Lars-Christer, H. y Antelius, E. (2011). Communicative disability and stories: towards an embodied conception of narratives, Health, 15(6), 588-603. https://doi.org/10.1177/1363459310364158
Manning, M. y Rymes, B. (2005). Living narrative: creating lives in everyday storytelling. Language in Society, 34(3), 470-474. https://doi.org/10.1017/S004740450522016X
Marshall, M. (1996). Sampling for qualitative research. Family Practice, 13(6), 522-525. https://doi.org/10.1093/fampra/13.6.522
Milner, P., Bray, A., Cleland, G., Taylor, J., Entwisle, R. y Wilson, P. (2004). Community participation: people with disabilities finding their place. Dunedin: Donald Beasley Institute y NZCCS.
Milner, P. y Kelly, B. (2009). Community participation and inclusion: people with disabilities defining their place. Disability and Society, 24(1), 47-62. https://doi.org/10.1080/09687590802535410
Ministerio de Educación (Mineduc) (2011). Orientaciones para dar respuestas educativas a la diversidad y a las necesidades educativas especiales. Recuperado de http://especial.mineduc.cl/wp-content/uploads/sites/31/2016/09/201404021642530.ORIENTACIONES_RESPUESTAS_A_LA_DIVERSIDAD.pdf.
Ministerio de Educación (Mineduc) (2019). ¿Qué sabemos sobre admisión a la educación superior? Una revisión para implementación del nuevo Sistema de Acceso en Chile. Santiago: Ministerio de Educación.
Mishler, E. G. (1995). Models of narrative analysis: a typology. Journal of Narrative and Life History, 5(2), 87-123. https://doi.org/10.1075/jnlh.5.2.01mod
Organización de las Naciones Unidas (ONU) (2006). Convención sobre los Derechos de las Personas con Discapacidad. Recuperado de https://www.ohchr.org/Documents/Publications/AdvocacyTool_sp.pdf.
Patton, M. (2002). Qualitative research and evaluation methods. 3.ª ed. Thousand Oaks: Sage Publications.
Programa Inclusivo de Acceso y Acompañamiento para Estudiantes en Situación de Discapacidad (PIAA) (2019). Quiénes somos. Recuperado de http://piaa.ufro.cl/.
Razer, M., Friedman, V. y Warshofsky, B. (2013). Schools as agents of social exclusion and inclusion. International Journal of Inclusive Education, 17. https://doi.org/10.1080/13603116.2012.742145
Riesmann, C. (1993). Narrative analysis. London: Sage.
Riesmann, C. (2005). Narrative analysis. London: Sage.
Rizo López, A. E. (2006). ¿A qué llamamos exclusión social? Polis [En línea], 15 | 2006. URL: http://journals.openedition.org/polis/5007.
Ross, N. J., Renold, E., Holland, S. y Hillman, A. (2009). Moving stories: using mobile methods to explore the everyday lives of young people in public care. Qualitative Research, 9(5), 605-623. https://doi.org/10.1177/1468794109343629
Sanz Hernández, A. (2005). El método biográfico en investigación social: potencialidades y limitaciones de las fuentes orales y los documentos personales. Asclepio, LVII, 99-115. https://doi.org/10.3989/asclepio.2005.v57.i1.32
Servicio Nacional de la Discapacidad (Senadis) (2016). Segundo estudio nacional de la discapacidad 2015. Informe metodológico. Recuperado de file:///C:/Users/cyd/Downloads/Informe%20Metodologico%20II%20Estudio%20Nacional%20de%20la%20Discapacidad%20(1).pdf [Consultado 31-12-2018].
Servicio Nacional de la Discapacidad (Senadis) (2017). Región de la Araucanía. Recuperado de https://www.senadis.gob.cl/region/araucania/d/noticias/7043/senadis-lanza-el-programa-de-apoyo-a-estudiantes-en-situacion-de-discapacidad-en-instituciones-de-educacion-superior-2018 [Consultado 31-12-2018].
Servicio Nacional de la Discapacidad (Senadis) (2018). Balance de gestión integral. Año 2017. Recuperado de https://www.senadis.gob.cl.
Smith, B. y Sparkes, A. C. (2005). Analyzing talk in qualitative inquiry: exploring possibilities, problems, and tensions. Quest, 57, 213-242. https://doi.org/10.1080/00336297.2005.10491854
Smith, B. y Sparkes, A. C. (2008). Narrative and its potential contribution to disability studies. Disability y Society, 23(1), 17-28. https://doi.org/10.1080/09687590701725542
Smith, B. y Sparkes, A. C. (2012). Introduction. An invitation to qualitative research. En K. Young y M. Atkinson (Eds.), Qualitative research on sport and physical culture. Bingley, UK: Emerald.
Soriano, F. y López, L. (2009). Discapacidad y cultura: desafío emergente en investigación. Avances en Enfermería, 27(1), 110-123. Recuperado de https://revistas.unal.edu.co/index.php/avenferm/article/view/12960/13678.
Sparkes, A. C. (2004). Bodies, narratives, selves and autobiography: the example of Lance Armstrong. Journal of Sport and Social Issues, 28, 397- 428. https://doi.org/10.1177/0193723504269907
Sparkes, A. C. (2005). Narrative analysis: exploring the whats and the hows of personal stories. En M. Holloway (Ed.), Qualitative research in health care. Open University Press. PMCid: PMC1255988.
Sparkes, A. C. y Smith, B. (2003). Men, sport, spinal cord injury and narrative time. Qualitative Research, 3, 295-320. https://doi.org/10.1177/1468794103033002
Universidad de Chile (2016). Inclusión de estudiantes en situación de discapacidad en la Universidad de Chile: un compromiso con la equidad. 31 de diciembre de 2018, de Universidad de Chile Sitio web: file:///C:/Users/verel/Downloads/inclusion%20de%20estudiantes%20en%20situacion%20de%20discapacidad%20en%20la%20universidad%20de%20chile%20un%20compromiso%20con%20la%20equidad.pdf.
Uprichard, E. y Byrne, D. (2006). Representing complex places: a narrative approach. Environment and Planning A: Economy and Space, 38(4), 665-676. https://doi.org/10.1068/a37333
Waldschmidt, A. (2017). Disability Goes Cultural: The Cultural Model of Disability as an Analytical Tool. En A. Waldschmidt, H. Berressem y M. Ingwersen (Eds.), Culture - Theory - Disability: Encounters between Disability Studies and Cultural Studies. Bielefeld: Transcript Verlag. https://doi.org/10.14361/9783839425336
Monroy Flores, V. E., & Mayorga Rojel, A. J. (2020). Narratives on inclusion-exclusion in university students with disabilities in the city of Temuco (Chile). Siglo Cero, 51(2), 73–98. https://doi.org/10.14201/scero20205127398
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