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Supporting Social Inclusion with DIY-ATs: Perspectives of Kenyan Caregivers of Children with Cognitive Disabilities

Published: 21 September 2023 Publication History

Abstract

Do-It-Yourself assistive technologies (DIY-ATs) that can be designed, fabricated, or customized by non-technical individuals can enable people with disabilities and their community members to create and customize their own technological solutions. DIY-ATs may better fit user needs than mass-produced alternatives. Recently, researchers have started to explore the possibilities and challenges of using DIY-ATs in contexts other than the Global North, where access to digital ATs is limited. Previous research has not yet studied the perspectives of caregivers of children with disabilities towards these technologies. We present findings from an interview study with caregivers of children and youth with cognitive disabilities in Western Kenya who used a DIY-AT system as a research probe. Participants described how negative beliefs about people with disabilities result in social exclusion and discrimination and explained how increased opportunities for social interaction and learning mediated through DIY and other customizable ATs for their children could support their inclusion, safety, and access to future opportunities.

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References

[1]
Melanie Baljko and Foad Hamidi. 2014. Knowledge co-creation and assistive technology. SRC 5, 3 (Oct. 2014). DOI:
[2]
Susan Baxter, Pam Enderby, Philippa Evans, and Simon Judge. 2012. Barriers and facilitators to the use of high-technology augmentative and alternative communication devices: A systematic review and qualitative synthesis. Int. J. Lang. Commun. Disord. 47, 2 (Mar. 2012), 115–129.
[3]
Andrew Bayor, Cliff Schmidt, Fidelis Dauri, Noel Wilson, Christopher Drovandi, and Margot Brereton. 2018. The talking book. In Proceedings of the 2nd African Conference for Human Computer Interaction: Thriving Communities, ACM, New York, NY. DOI:
[4]
Cynthia L. Bennett, Erin Brady, and Stacy M. Branham. 2018. Interdependence as a frame for assistive technology research and design. In Proceedings of the 20th International ACM SIGACCESS Conference on Computers and Accessibility. ACM, New York, NY. DOI:
[5]
Cynthia L. Bennett, Keting Cen, Katherine M. Steele, and Daniela K. Rosner. 2016. An intimate laboratory?: Prostheses as a tool for experimenting with identity and normalcy. In Proceedings of the CHI Conference on Human Factors in Computing Systems. ACM, New York, NY. DOI:
[6]
Eva Brandt, Thomas Binder, and Elizabeth B.-N. Sanders. 2015. Tools and techniques. In Routledge International Handbook of Participatory Design. Routledge.
[7]
Erin Buehler, Stacy Branham, Abdullah Ali, Jeremy J. Chang, Megan Kelly Hofmann, Amy Hurst, and Shaun K. Kane. 2015. Sharing is caring: Assistive technology designs on thingiverse. In Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems (CHI’15). ACM Press, New York, New York. DOI:
[8]
Brittany M. Charlton, Ditte Mølgaard-Nielsen, Henrik Svanström, Jan Wohlfahrt, Björn Pasternak, and Mads Melbye. 2016. Maternal use of oral contraceptives and risk of birth defects in Denmark: prospective, nationwide cohort study. BMJ 352, (Jan. 2016), h6712.
[9]
Julie Claassens, Leslie Swartz, and Len Hansen (Eds.). 2013. Searching for Dignity: Conversations on Human Dignity, Theology and Disability. SUN MeDIA.
[10]
Christopher Csikszentmihalyi, Jude Mukundane, Gemma F. Rodrigues, Daniel Mwesigwa, and Michelle Kasprzak. 2018. The space of possibilities: Political economies of technology innovation in sub-Saharan Africa. In Proceedings of the CHI Conference on Human Factors in Computing Systems. ACM, New York, NY. DOI:
[11]
Melissa Dawe. 2006. Desperately seeking simplicity. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems. ACM, New York, NY. DOI:
[12]
Carl DiSalvo, Andrew Clement, and Volkmar Pipek. 2012. Communities: Participatory design for, with and by communities. In Routledge International Handbook of Participatory Design. Routledge, 202–230.
[13]
Arne H. Eide and Tone Øderud. 2009. Assistive technology in low-income countries. In Disability & International Development. Springer US, New York, NY, 149–160.
[14]
Martha Geiger. 2010. Using cultural resources to build an inclusive environment for children with severe communication disabilities: A case study from Botswana. Child. Geogr. 8, 1 (Feb. 2010), 51–63.
[15]
Foad Hamidi, Melanie Baljko, Toni Kunic, and Ray Feraday. 2015. TalkBox: A DIY communication board case study. J. Assist. Technol. 9, 4 (Dec. 2015), 187–198.
[16]
Foad Hamidi, Patrick Mbullo, Deurence Onyango, Michaela Hynie, Susan McGrath, and Melanie Baljko. 2018. Participatory design of DIY digital assistive technology in Western Kenya. In Proceedings of the 2nd African Conference for Human Computer Interaction: Thriving Communities. ACM, New York, NY, 1–11.
[17]
Foad Hamidi, Patrick Mbullo Owuor, Michaela Hynie, and Melanie Baljko. 2022. “Knowledge comes through participation”: Understanding disability through the lens of DIY assistive technology in Western Kenya. Proc. ACM Hum. Comput. Interact. 6, CSCW1 (Mar. 2022), 1–25.
[18]
Foad Hamidi, Patrick Mbullo Owuor, Michaela Hynie, Melanie Baljko, and Susan McGrath. 2017. Potentials of digital assistive technology and special education in Kenya. In Sustainable ICT Adoption and Integration for Socio-Economic Development. IGI Global, 125–151.
[19]
Eric Hersman. 2013. The need for both maker spaces and incubators in Africa. Retrieved from http://ventureburn.com/2013/02/the-need-for-both-makerspaces-and-incubators-in-africa/
[20]
Erin Higgins, William Berkley Easley, Karen L. Gordes, Amy Hurst, and Foad Hamidi. 2022. Creating 3D printed assistive technology through design shortcuts: Leveraging digital fabrication services to incorporate 3D printing into the physical therapy classroom. In Proceedings of the 24th International ACM SIGACCESS Conference on Computers and Accessibility. dl.acm.org, 1–16.
[21]
Megan Hofmann, Julie Burke, Jon Pearlman, Goeran Fiedler, Andrea Hess, Jon Schull, Scott E. Hudson, and Jennifer Mankoff. 2016. Clinical and maker perspectives on the design of assistive technology with rapid prototyping technologies. In Proceedings of the 18th International ACM SIGACCESS Conference on Computers and Accessibility. ACM, New York, NY. DOI:
[22]
Megan Hofmann, Kristin Williams, Toni Kaplan, Stephanie Valencia, Gabriella Hann, Scott E. Hudson, Jennifer Mankoff, and Patrick Carrington. 2019. Occupational therapy is making. In Proceedings of the CHI Conference on Human Factors in Computing Systems. ACM, New York, NY. DOI:
[23]
Catherine Holloway, Victoria Austin, Giulia Barbareschi, Felipe R. Barajas, Lucie Pannell, Dafine M. Ramirez, Richard Frost, Iain McKinnon, Chris Holmes, Rosemary Frazer, Maria Kett, Nora Groce, Mark Carew, Ola Abu Alghaib, Chapal Khasnabis, Emma Tebbutt, Emily Kobayashi, and Frederik Seghers. 2018. Scoping Research Report on Assistive Technology–On the Road for Universal Assistive Technology Coverage. Prepared for the UK Department for International Development, Geneva.
[24]
Jonathan Hook, Sanne Verbaan, Abigail Durrant, Patrick Olivier, and Peter Wright. 2014. A study of the challenges related to DIY assistive technology in the context of children with disabilities. In Proceedings of the Conference on Designing Interactive Systems. ACM, New York, NY. DOI:
[25]
Global Disability Innovation Hub. 2019. Africa's First Innovation Ecosystem dedicated to Assistive Technology launched In Nairobi, Kenya. Disabilityinnovation.com. Retrieved from https://www.disabilityinnovation.com/news/worlds-first-innovation-ecosystem-dedicated-to-assistive-technology-to-be-launched-in-nairobi-kenya
[26]
Amy Hurst and Jasmine Tobias. 2011. Empowering individuals with do-it-yourself assistive technology. In Proceedings of the 13th International ACM SIGACCESS Conference on Computers and Accessibility (ASSETS’11). ACM Press, New York, NY. DOI:
[27]
Hilary Hutchinson, Heiko Hansen, Nicolas Roussel, Björn Eiderbäck, Wendy Mackay, Bo Westerlund, Benjamin B. Bederson, Allison Druin, Catherine Plaisant, Michel Beaudouin-Lafon, Stéphane Conversy, and Helen Evans. 2003. Technology probes. In Proceedings of the Conference on Human Factors in Computing Systems (CHI’03). ACM Press, New York, NY. DOI:
[28]
Lynn Kirabo, Elizabeth J. Carter, and Aaron Steinfeld. 2020. You are asking me to pay for my legs. In Proceedings of the 3rd ACM SIGCAS Conference on Computing and Sustainable Societies. ACM, New York, NY. DOI:
[29]
Lynn Kirabo, Elizabeth Jeanne Carter, Devon Barry, and Aaron Steinfeld. 2021. Priorities, technology, & power: Co-designing an inclusive transit agenda in Kampala, Uganda. In Proceedings of the CHI Conference on Human Factors in Computing Systems. ACM, New York, NY. DOI:
[30]
Marilyn M. Lombardi. 2007. Authentic learning for the 21st century: An overview. Retrieved from http://alicechristie.org/classes/530/EduCause.pdf
[31]
Janis Lena Meissner, John Vines, Janice McLaughlin, Thomas Nappey, Jekaterina Maksimova, and Peter Wright. 2017. Do-it-yourself empowerment as experienced by novice makers with disabilities. In Proceedings of the Conference on Designing Interactive Systems, ACM, New York, NY, 1053–1065.
[32]
Sharan B. Merriam and Elizabeth J. Tisdell. 2015. Qualitative Research: A Guide to Design and Implementation. John Wiley & Sons.
[33]
M. Miles. 2002. Some influences of religions on attitudes towards disabilities and people with disabilities. J. Relig. Disabil. Health 6, 2–3 (Mar. 2002), 117–129.
[34]
Dafne Zuleima Morgado-Ramirez, Giulia Barbareschi, Maggie Kate Donovan-Hall, Mohammad Sobuh, Nida’ Elayyan, Brenda T. Nakandi, Robert Tamale Ssekitoleko, Joyce Olenja, Grace Nyachomba Magomere, Sibylle Daymond, Jake Honeywill, Ian Harris, Nancy Mbugua, Laurence Kenney, and Catherine Holloway. 2020. Disability design and innovation in computing research in low resource settings. In Proceedings of the 22nd International ACM SIGACCESS Conference on Computers and Accessibility. ACM, New York, NY. DOI:
[35]
Erick Oduor, Carman Neustaedter, Tejinder K. Judge, Kate Hennessy, Carolyn Pang, and Serena Hillman. 2014. How technology supports family communication in rural, suburban, and urban Kenya. In Proceedings of the 32nd Annual ACM Conference on Human Factors in Computing Systems (CHI’14). ACM Press, New York, NY. DOI:
[36]
Erick Oduor, Peninah Waweru, Jonathan Lenchner, and Carman Neustaedter. 2018. Practices and technology needs of a network of farmers in Tharaka Nithi, Kenya. In Proceedings of the CHI Conference on Human Factors in Computing Systems. ACM, New York, NY. DOI:
[37]
Oluwabunmi Adewoyin Olakanmi, Gokce Akcayir, Oluwbukola Mayowa Ishola, and Carrie Demmans Epp. 2020. Using technology in special education: Current practices and trends. Educ. Technol. Res. Dev. 68, 4 (Aug. 2020), 1711–1738.
[38]
Joyojeet Pal, Priyank Chandra, Terence O'Neill, Maura Youngman, Jasmine Jones, Ji Hye Song, William Strayer, and Ludmila Ferrari. 2016. An accessibility infrastructure for the global south. In Proceedings of the 8th International Conference on Information and Communication Technologies and Development. ACM, New York, NY. DOI:
[39]
Joyojeet Pal, Anandhi Viswanathan, Priyank Chandra, Anisha Nazareth, Vaishnav Kameswaran, Hariharan Subramonyam, Aditya Johri, Mark S. Ackerman, and Sile O'Modhrain. 2017. Agency in assistive technology adoption. In Proceedings of the CHI Conference on Human Factors in Computing Systems. ACM, New York, NY. DOI:
[40]
Jeremiah Parry-Hill, Patrick C. Shih, Jennifer Mankoff, and Daniel Ashbrook. 2017. Understanding volunteer AT fabricators: Opportunities and challenges in DIY-AT for Others in e-NABLE. In Proceedings of the CHI Conference on Human Factors in Computing Systems (CHI’17). Association for Computing Machinery, New York, NY, 6184–6194.
[41]
Robert Phipps. 2022. Switching from stakeholder. Research Impact Canada. Retrieved from https://researchimpact.ca/featured/switching-from-stakeholder/
[42]
Mana Poustizadeh. 2022. Design Justice Principles and Do-It-Yourself assistive technology. Retrieved from http:/hdl.handle.net/10315/39130
[43]
Halley P. Profita, Abigale Stangl, Laura Matuszewska, Sigrunn Sky, and Shaun K. Kane. 2016. Nothing to hide: Aesthetic customization of hearing aids and cochlear implants in an online community. In Proceedings of the 18th International ACM SIGACCESS Conference on Computers and Accessibility (ASSETS’16). Association for Computing Machinery, New York, NY, 219–227.
[44]
Ravihansa Rajapakse, Margot Brereton, and Laurianne Sitbon. 2018. Design artefacts to support people with a disability to build personal infrastructures. In Proceedings of the Designing Interactive Systems Conference. ACM, New York, NY. DOI:
[45]
Mark Reed. 2022. Should we banish the word “stakeholder”? Fast Track Impact. Retrieved from https://www.fasttrackimpact.com/post/why-we-shouldn-t-banish-the-word-stakeholder
[46]
Danielle Ribeiro, Stephanie R. Cimino, Amanda L. Mayo, Matt Ratto, and Sander L. Hitzig. 2021. 3D printing and amputation: A scoping review. Disabil. Rehabil. Assist. Technol. 16, 2 (Feb. 2021), 221–240.
[47]
David Smith. 2012. Kenya building a digital future in Africa's silicon Savannah. The Guardian. Retrieved from https://www.theguardian.com/world/2012/oct/30/kenya-silicon-savannah-digital-technology
[48]
United Nations Committee on the Rights of Persons with Disabilities. 2010. Compendium on Convention on the Rights of Persons with Disabilities. Kenya National Commission on Human Rights, Geneva.
[49]
Rua M. Williams and Juan E. Gilbert. 2019. “Nothing about us without us” transforming participatory research and ethics in human systems engineering. In Advancing Diversity, Inclusion, and Social Justice Through Human Systems Engineering. CRC Press, Boca Raton, FL, 113–134.
[50]
Heike Winschiers-Theophilus and Nicola J. Bidwell. 2013. Toward an Afro-centric indigenous HCI paradigm. Int. J. Hum. Comput. Interact. 29, 4 (Mar. 2013), 243–255.
[51]
Heike Winschiers-Theophilus, Shilumbe Chivuno-Kuria, Gereon Koch Kapuire, Nicola J. Bidwell, and Edwin Blake. 2010. Being participated: A community approach. In Proceedings of the 11th Biennial Participatory Design Conference– (PDC’10). ACM Press, New York, NY. DOI:
[52]
World Health Organization. 2010. Community-based Rehabilitation Guidelines. WHO, Geneva.
[53]
World Health Organization, World Bank. 2011. World Report on Disability. WHO, Geneva.
[54]
Siri Wormnæs and Yvette Abdel Malek. 2004. Egyptian speech therapists want more knowledge about augmentative and alternative communication. Augment. Altern. Commun. 20, 1 (Mar. 2004), 30–41.
[55]
Susan Wyche. 2020. Using cultural probes in HCI4D/ICTD: A design case study from Bungoma, Kenya. Proc. ACM Hum. Comput. Interact. 4, CSCW1 (May 2020), 1–23.

Cited By

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  • (2024)An Investigation of the Experiences of Orientation and Mobility Trainers in IndiaProceedings of the 21st International Web for All Conference10.1145/3677846.3677847(1-9)Online publication date: 13-May-2024
  • (2024)An Ecosystem of Support: A U.S. State Government-Supported DIY-AT Program for Residents with DisabilitiesProceedings of the 26th International ACM SIGACCESS Conference on Computers and Accessibility10.1145/3663548.3675667(1-16)Online publication date: 27-Oct-2024

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  1. Supporting Social Inclusion with DIY-ATs: Perspectives of Kenyan Caregivers of Children with Cognitive Disabilities

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    Published In

    cover image ACM Transactions on Accessible Computing
    ACM Transactions on Accessible Computing  Volume 16, Issue 3
    September 2023
    139 pages
    ISSN:1936-7228
    EISSN:1936-7236
    DOI:10.1145/3624974
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    Association for Computing Machinery

    New York, NY, United States

    Publication History

    Published: 21 September 2023
    Online AM: 18 August 2023
    Accepted: 02 August 2023
    Revised: 07 June 2023
    Received: 04 February 2023
    Published in TACCESS Volume 16, Issue 3

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    Author Tags

    1. Kenya
    2. disability
    3. DIY assistive technologies
    4. participatory design
    5. interdependence

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    View all
    • (2024)An Investigation of the Experiences of Orientation and Mobility Trainers in IndiaProceedings of the 21st International Web for All Conference10.1145/3677846.3677847(1-9)Online publication date: 13-May-2024
    • (2024)An Ecosystem of Support: A U.S. State Government-Supported DIY-AT Program for Residents with DisabilitiesProceedings of the 26th International ACM SIGACCESS Conference on Computers and Accessibility10.1145/3663548.3675667(1-16)Online publication date: 27-Oct-2024

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