Email this article 
Hide
Show all
How Can People with Intellectual Disabilities Be Supported to Engage in Citizen Science?
Abstract
Research Aim: This commentary paper draws on literature and research examples to explore whether inclusive research methods and processes have a role to play in increasing the participation of people with intellectual disabilities in citizen science projects.
Evidence-based Facts: In order to develop a case for the potential role that inclusive research methods and processes might play in enhancing the inclusivity of citizen science, this paper: 1) provides an overview of the characteristics, methods and principles of citizen science; 2) compares citizen science to inclusive research and 3) provides an example drawn from a small pilot study of how inclusive research methods and approaches were employed to support people with intellectual disabilities to engage in a citizen science project.
Summary: The authors conclude that it is possible to use inclusive methods and processes to engage people with intellectual disabilities in citizen science projects, but that professional scientists will need to be willing to be more flexible in their understanding of what citizen science is. The adoption or adaptation of inclusive research methods and processes offers citizen science an opportunity to expand engagement and create more inclusive research environments for people with intellectual disabilities.
Keywords
Full Text:
PDFReferences
Bigby, C., Frawley, P.,& Ramcharan, P. (2014). Conceptualizing inclusive research with people with intellectual disability. Journal of Applied Research in Intellectual Disabilities, 27(1), 3–12. https://doi.org/10.1111/jar.12083
Bonney, R., Cooper, C.B., Dickinson, J., Kelling, S., Phillips, T., Rosenberg, K., & Shirk, J. (2009). Citizen science: A developing tool for expanding science knowledge and scientific literacy. BioScience, 59(11), 977–984. https://doi.org/10.1525/bio.2009.59.11.9
Brown, N. (2018). Exploring the lived experience of fibromyalgia using creative data collection methods. Cogent Social Sciences, 4(1). https://doi.org/10.1080/23311886.2018.1447759
Carr, J.E (2018). How do People with Learning Disabilities Understand Citizen Inquiry? Masters in Research Thesis. The Open University. http://oro.open.ac.uk/53815/
Carr, J.E. (2021). Can an Inclusive Approach Meaningfully Engage People with Learning Disabilities? Exploring Capacity Building for Citizen Science. PhD Thesis. The Open University. https://oro.open.ac.uk/79450/
Chalachanová, A., Lid, I., M., & Gjermestad, A. (2021). Citizenship of persons with intellectual disabilities within the frame of inclusive research: A scoping review of studies to inform future research. Alter, 15(2), 139–152. https://doi.org/10.1016/j.alter.2020.09.001
Chambers, D.W. (1983). Stereotypic images of the scientist: The draw a scientist test. Science Education, 67(2), 255–265. https://doi.org/10.1002/sce.3730670213
Chapman, K., Dixon, A., Cocks, K., Ehrlich, C., & Kendall, E. (2022). The Dignity Project Framework: An extreme citizen science framework in occupational therapy and rehabilitation research. Australian Occupational Therapy Journal, 69(6), 742–752. https://doi.org/10.1111/1440-1630.12847
Cooper, C.B., Hawn, C.L., Larson, L.R., Parrish, J.K., Bowser, G., Cavalier, D., Dunn, R.R., Haklay, M., Gupta, K.K., … & Wilson, S. (2021). Inclusion in citizen science: The conundrum of rebranding. Science, 372(6549), 1386–1388. https://doi.org/10.1126/science.abi6487
Curtis, V. (2015). Online citizen science projects: An exploration of motivation, contribution and participation. PhD Thesis. The Open University. http://oro.open.ac.uk/42239/
Dawson, E. (2018). Reimagining publics and (non)participation: Exploring exclusion from science communication through the experiences of low-income, minority ethnic groups. Public Understanding of Science, 27(7), 772–786. https://doi.org/10.1177/096366251775007
Dew, A., Collings, S., Dillon Savage, I., Gentle, E., & Dowse, L. (2019). “Living the life I want”: A framework for planning engagement with people with intellectual disability and complex support needs. Journal of Applied Research in Intellectual Disabilities, 32(2), 401–12. https://doi.org/10.1111/jar.12538
Dibner, K.A., & Pandya, R. (2018). Learning Through Citizen Science: Enhancing Opportunities by Design. The National Academies Press.
Dickinson, J.L., Bonney, R., Louv, R., & Fitzpatrick, W.J. (2012). Citizen Science: Public Participation in Environmental Research. Cornell University Press and Comstock Publishing Associates.
European Citizen Science Association. (2015). Ten principles of citizen science. https://ecsa.citizenscience.net/sites/default/files/ecsa_ten_principles_of_citizen_science.pdf
Durant, J. (1994). What is scientific literacy? European Review, 2(1), 83–89. https://doi.org/10.1017/S1062798700000922
Groot, B., & Abma, T. (2022). Ethics framework for citizen science and public and patient participation in research. BMC Med Ethics, 23, Article 23. https://doi.org/10.1186/s12910-022-00761-4
Haklay, M. (2013). Citizen science and volunteered geographic information: Overview and typology of participation. In D. Sui, S. Elwood, & M. Goodchild (Eds.), Crowdsourcing geographic knowledge: Volunteered geographic information (VGI) in Theory and Practice (pp. 105–122). Springer.
Havens, K., & Henderson, S. (2013). Citizen Science takes root. American Scientist, 101(5), 378–385. https://doi.org/10.1511/2013.104.378
Herodotou, C., Sharples, M., & Scanlon, E. (2018). Introducing citizen inquiry. In C. Herodotou, M. Sharples, & E. Scanlon (Eds.), Citizen Inquiry: Synthesising Science and Inquiry Learning (pp. 1–6). Routledge.
Hewitt, O., Langdon, P.E., Tapp, K., & Larkin, M. (2023). A systematic review and narrative synthesis of inclusive health and social care research with people with intellectual disabilities: How are co-researchers involved and what are their experiences? Journal of Applied Research in Intellectual Disabilities, 36(4), 681–701. https://doi.org/10. 1111/jar.13100
Howlett, R., Sitbon, L., Hoogstrate, M., & Balasuriya. S.S. (2021). Accessible Citizen Science, by people with intellectual disability. In Proceedings of the 23rd International ACM SIGACCESS Conference on Computers and Accessibility (ASSETS ‘21). Association for Computing Machinery, New York, NY, USA, Article 48, 1–3. https://doi.org/10.1145/3441852.3476558
Inglis, P., & Cook, T. (2011). Ten top tips for effectively involving people with a learning disability in research. Journal of Learning Disabilities and Offending Behaviour, 2(2), 98–104. https://doi.org/10.1108/20420921111152441
Irwin, A. (1995). Citizen Science: A Study of People, Expertise, and Sustainable Development. Routledge.
Jones, M.G., Childers, G., Andre, J., Corin, N.E., & Hite, P. (2018). Citizen scientists and non-citizen scientist hobbyist: Motivation, benefits and influences. International Journal of Science Education, Part B, 8(4), 287–306. https://doi.org/10.1080/21548455.2018.1475780
Kim, M.A., Yi, J., Bradbury, L., Han, K.M., Yang, J., & Lee. J. (2021). A photovoice study: The life experiences of middle-aged adults with intellectual disabilities in Korea. Journal of Applied Research in Intellectual Disabilities, 34(3), 852–865. https://doi.org/10.1111/jar.12870
Krüger, D., Krümpelmann, S., Pelka, B., & Schulz, A.C. (2023). Inclusiveness of citizen science. How people with disabilities can participate in citizen science approaches. In M. Antona & C. Stephanidis (Eds.), Universal Access in Human-Computer Interaction. HCII 2023. Lecture Notes in Computer Science (Vol. 14020, pp. 88–98). Springer. https://doi-org.libezproxy.open.ac.uk/10.1007/978-3-031-35681-0_6
Land-Zastra, A.M., Devilee, J.L.A., Snik, F., Buurmeyer, F., & Vander Broek, J.M. (2016). Citizen science on a smartphone: Participants motivations and learning. Public Understanding of Science, 25(1), 45–60. https://doi.org/10.1177/0963662515602406
Nind, M., & Vinha, H. (2012). Doing Research Inclusively: Doing Research Well? Research Report. https://www.southampton.ac.uk/assets/imported/transforms/content-block/UsefulDownloads_Download/97706C004C4F4E68A8B54DB90EE0977D/full_report_doing_research.pdf
Nind, M. (2014). What Is Inclusive Research? Bloomsbury Academic.
Nind, M., Chapman, R., Seale, J., & Tilley, L. (2016). The conundrum of training and capacity building for people with learning disabilities doing research. Journal of Applied Research in Intellectual Disabilities, 29(6), 542–551. https://doi.org/10.1111/jar.12213
Nind, M., & Strnadová, I. (2020). Belonging for People with Profound and Multiple Learning Disabilities: Pushing the Boundaries of Inclusion. Routledge.
Rix, J., Garcia Carrizosa, H., Seale, J., Sheehy, K., & Hayhoe, S. (2020). The while of participation: A systematic review of participatory research involving people with sensory impairments and/or intellectual impairments. Disability and Society, 35(7), 1031–1057. https://doi.org/10.1080/09687599.2019.1669431
Robinson L.D., Cawthray, J.L., West, S.E., Bonn, A., & Ansine, J. (2018). Ten principles of Citizen Science. In S. Hecker, M. Haklay, A. Bowser, Z. Makuch, J. Vogel, & A. Bonn (Eds.), Citizen Science: Innovation in Open Science, Society and Policy (pp. 1–23). UCL Press.
Rojas-Pernia, S., & Haya-Salmón, I. (2022). Inclusive research and the use of visual, creative and narrative strategies in Spain. Social Sciences, 11(4), 154. https://doi.org/10.3390/socsci11040154
Silvertown, J. (2009). A new dawn for Citizen Science. Trends in Ecology & Evolution, 24(9), 467–471. https://doi.org/10.1016/j.tree.2009.03.017
Strnadová, I., Cumming T.M., Knox, M., Parmenter, T., & Welcome to Our Class Research Group. (2014). Building an inclusive research team: The importance of team building and skills training. Journal of Applied Research in Intellectual Disability, 27(1), 13–22. https://doi.org/10.1111/jar.12076
Strnadová, I., Walmsley, J., Johnson, K., & Cumming, T.M. (2016). Diverse faces of inclusive research: Reflecting on three research studies. Scandinavian Journal of Disability Research, 18(1), 52–64. https://doi.org/10.1080/15017419.2014.964766
Toerpe, K. (2013). The rise of Citizen Science. The Futurist, 47(4), 25–30.
Walmsley, J., & Johnson, K. (2003). Inclusive Research with People with Learning Disabilities: Past, Present and Futures. Jessica Kingsley.
Walmsley, J., Strnadová, I., & Johnson, K. (2018). The added value of inclusive research. Journal of Applied Research in Intellectual Disabilities, 31(5) 751–59. https://doi.org/10.1111/jar.12431
Woelders, S., Abma, T., Visser, T., & Schipper, K. (2015). The power of difference in inclusive research. Disability and Society, 30(4), 528–542. https://doi.org/10.1080/09687599.2015.1031880
DOI: http://dx.doi.org/10.17951/lrp.2025.44.1.153-170
Date of publication: 2025-03-25 23:48:59
Date of submission: 2024-07-25 17:25:22
Statistics
Indicators
Copyright (c) 2025
This work is licensed under a Creative Commons Attribution 4.0 International License.