Diseñar para personas con autismo: cultura digital, etnografía, investigación situada

Nohemí Lugo Rodríguez

doi:10.7764/cdi.54.53197

Autores

Nohemí Lugo Rodríguez Tecnológico de Monterrey

DOI:

https://doi.org/10.7764/cdi.54.53197

Palavras-chave:

deficiências, metodologia, práticas de cultura digital, etnografia inclusiva, pesquisa-ação participativa, conhecimento situado, desenho para a justiça

Resumo

O artigo discute a intersecção da etnografia e do desenho como abordagem metodológica em dois estudos cujo objetivo era desenhar para pessoas com autismo pré-verbal e suas mães. Discute-se a influência e os desafios da posição do pesquisador nas diferentes etapas da pesquisa devido ao pertencimento ao grupo com quem e para quem a pesquisa é feita. Como constatação da implementação metodológica dessas investigações, propõe-se um marco inicial para a realização de etnografia inclusiva. Por fim, se faz a reflexão sobre o significado da etnografia e do design em relação à pesquisa-ação participativa e à pesquisa situada.

Biografia do Autor

Nohemí Lugo Rodríguez, Tecnológico de Monterrey

Nohemí Lugo Rodríguez, doutora em Comunicação; professora assistente de pesquisa no Departamento de Mídia e Cultura Digital do Instituto Tecnológico de Monterrey Campus Querétaro, assessora do Mestrado em Humanidades Digitais e do Doutorado em Estudos Humanísticos da mesma instituição. Sua pesquisa é concentrada na intersecção da narrativa, cultura digital e comunicação interativa, e no desenho de projetos que promovam a inclusão, a saúde e a educação, especialmente para pessoas com autismo.

Referências

Brownlow, C. (2010). Re-presenting Autism: The Construction of ‘NT Syndrome’. Journal of Medical Humanities, 31, 243-255. https://doi.org/10.1007/s10912-010-9114-4

Castañeda-Sifuentes, L., Maya-López, M., & Leyva-Picazo, V. (2021). Arquitectura para el autismo: Una reflexión del diseño de ambientes de aprendizaje (Architecture for autism: A reflection of the design of learning environments). Legado de Arquitectura y Diseño, 17(31), 105-114. https://legadodearquitecturaydiseno.uaemex.mx/article/view/16453

Castillo-González, M. C. (2018). Narrativas de reconocimiento y justicia en Red. El videoactivismo por Ayotzinapa en YouTube (Networked Narratives of Recognition and Justice. Ayotzinapa’s Videoactivism in YouTube) (Doctoral dissertation, Tecnológico de Monterrey).

https://repositorio.tec.mx/handle/11285/632427

Costanza-Chock, S. (2020). Design Justice: Community-Led Practices to Build the Worlds We Need. The MIT Press.

Dawson, M. & Fletcher-Watson, S. (2021). When autism researchers disregard harms: A commentary. Autism, 26(2), 564-566. https://doi.org/10.1177/13623613211031403

Dawson, M., Soulières, I., Ann Gernsbacher, M., & Mottron, L. (2007). The Level and Nature of Autistic Intelligence. Psychological Science, 18(8), 657-662. https://doi.org/10.1111/j.1467-9280.2007.01954.x

Ellis, T. J. & Levy, Y. (2010). A Guide for Novice Researchers: Design and Development Research Methods. In Proceedings of Informing Science & IT Education Conference (InSITE) (Vol. 10) (pp. 107-117). https://doi.org/10.28945/1237

Fletcher-Watson, S., Adams, J., Brook, K., Charman, T., Crane, L., Cusack, J., Leekam, S., Milton, D., Parr, J. R., & Pellicano, E. (2019). Making the future together: Shaping autism research through meaningful participation. Autism, 23(4), 943-953. https://doi.org/10.1177/1362361318786721

Flores-Márquez, D. (2021). Etnografía digital y sus reconfiguraciones permanentes (The Permanent Reconfigurations in Digital Ethnography). In D. Flores-Márquez & R. González Reyes (Coords.), La imaginación metodológica. Coordenadas, rutas y apuestas para el estudio de la cultura digital (Methodological Imagination: Coordinates, Routes, and Wagers for the Study of Digital Culture) (pp. 91-115). Tintable.

Galis, V. (2011). Enacting disability: how can science and technology studies inform disability studies? Disability & Society, 26(7), 825-838. https://doi.org/10.1080/09687599.2011.618737

Gómez Cruz, E. (2017). Etnografía celular: una propuesta emergente de etnografía digital (Cellular ethnography: an emergent proposal of digital ethnography). Virtualis, 8(16), 77-98. https://www.revistavirtualis.mx/index.php/virtualis/article/view/251

Guber, R. (2001). La etnografía. Método, campo y reflexividad (Ethnography: Method, Field, and Reflexivity). Siglo XXI. Haraway, D. (1988). Situated Knowledges: The Science Question in Feminism and the Privilege of Partial Perspective. Feminist Studies, 14(3). 575-599. https://doi.org/10.2307/3178066

Jiménez Maya, J. C. (2021). Trayectorias de aprendizaje de jóvenes y adultos con TDAH: inclusión, exclusión y tecnología (Trajectories of learning of young and adults with ADD: inclusion, exclusion and technology) (Master thesis, Tecnológico de Monterrey).

https://repositorio.tec.mx/handle/11285/642871

Kavanagh, C. (2018). What Contemporary Models of Disability Miss: The Case for a Phenomenological Hermeneutic Analysis. IJFAB: International Journal of Feminist Approaches to Bioethics, 11(2), 63-82. https://doi.org/10.3138/ijfab.2018.01.26.1

Khanna, R., Madhavan, S. S., Smith, M. J., Patrick, J. H., Tworek, C., & Becker-Cottrill, B. (2011). Assessment of Health-Related Quality of Life Among Primary Caregivers of Children with Autism Spectrum Disorders. Journal of Autism and Developmental Disorders, 41, 1214-1227. https://doi.org/10.1007/s10803-010-1140-6

Kittay, E. F. (2011). The Ethics of Care, Dependence, and Disability. Ratio Juris, 24(1), 49-58. https://doi.org/10.1111/j.1467-9337.2010.00473.x

Leon, L. (2018). Child YouTubers and the video creation process: Evidence of transmedia competencies in action. Comunicación y Sociedad, (33), 115-137. https://doi.org/10.32870/cys.v0i33.7080

Lugo, N. (2020). Transmedia Learning for Preverbal Children with Autism. Taking Advantage of Digital Culture and Devices. Sindéresis.

Lugo, N. & Melón, M. (2019). Design Process of an Alternate Reality Game (ARG) as a Strategy to Foster Social Support and Well-being of Mothers of Children with ASD. In 2019 IEEE 7th International Conference on Serious Games and Applications for Health (SeGAH) (pp. 1-7). IEEE. https://doi.org/10.1109/SeGAH.2019.8882440

Nadesan, M. H. (2005). Constructing Autism: Unravelling the 'Truth' and Understanding the Social. Routledge.

Padilla, R. (2021). Estrategias metodológicas participativas en el estudio de las prácticas digitales (Participatory Methodological Strategies in the Study of Digital Practices). In D. Flores- Márquez & R. González Reyes (Coords.), La imaginación metodológica. Coordenadas, rutas y apuestas para el estudio de la cultura digital (Methodological Imagination: Coordinates, Routes, and Wagers for the Study of Digital Culture) (pp. 203-224). Tintable.

Osteen, M. (Ed.). (2010). Autism and Representation. Routledge.

Pantazakos, T. (2019). Treatment for whom? Towards a phenomenological resolution of controversy within autism treatment. Studies in History and Philosophy of Science Part C: Studies in History and Philosophy of Biological and Biomedical Sciences, 77, 101176. https://doi.org/10.1016/j.shpsc.2019.04.001

Pérez Latorre, O. (2015). The Social Discourse of Video Games Analysis Model and Case Study: GTA IV. Games and Culture, 10(5), 415-437. https://doi.org/10.1177/1555412014565639

Pink, S., Horst, H., Postill, J., Hjorth, L., Lewis, T., & Tacchi, J. (2015). Digital Ethnography: Principles and Practice. Sage.

Pink, S. & Morgan, J. (2013). Short‐Term Ethnography: Intense Routes to Knowing. Symbolic Interaction, 36(3), 351-361. https://doi.org/10.1002/symb.66

Ribeiro, D. (2018). Breves reflexiones sobre Lugar de Enunciación (Short reflections about the Feminist Standpoint). Relaciones Internacionales, (39), 13–18. https://doi.org/10.15366/relacionesinternacionales2018.39.001

Scolari, C. A. (2018). Las leyes de la interfaz: diseño, ecología, evolución, tecnología (The laws of the interface: design, ecology, evolution, technology). Editorial Gedisa.

Thompson, C. M. (2015). Situated Knowledge: Feminist and Science and Technology Studies Perspectives. In J. D. Wright (Ed.), International Encyclopedia of the Social and Behavioral Sciences (2nd. Ed.) (pp. 1-4). https://doi.org/10.1016/B978-0-08-097086-8.85031-X

Weiss, J. A., Robinson, S., Fung, S., Tint, A., Chalmers, P., & Lunsky, Y. (2013). Family hardiness, social support, and self-efficacy in mothers of individuals with Autism Spectrum Disorders. Research in Autism Spectrum Disorders, 7(11), 1310-1317. https://doi.org/10.1016/j.rasd.2013.07.016

Winance, M. (2016). Rethinking disability: Lessons from the past, questions for the future. Contributions and limits of the social model, the sociology of science and technology, and the ethics of care. Alter, 10(2), 99-110. https://doi.org/10.1016/j.alter.2016.02.005

Yee, H. S. S. (2012, October 21-24). Mobile technology for children with Autism Spectrum Disorder: Major trends and issues. In 2012 IEEE Symposium on E-Learning, E-Management and E-Services (pp. 1-5). IEEE. https://doi.org/10.1109/IS3e.2012.6414954

Yin, R. K. (2016). Qualitative Research from Start to Finish. Guildford.

Zimmerman, J., Stolterman, E., & Forlizzi, J. (2010, August). An analysis and critique of Research through Design: towards a formalization of a research approach. In DIS '10: Proceedings of the 8th ACM Conference on Designing Interactive Systems (pp. 310-319). ACM. https://doi.org/10.1145/1858171.1858228