Ravihansa Rajapakse
ABSTRACT
A person with a disability has to assemble support services and technologies from different organisations in order to live well, which may require help from family. We call this assembling of services and technologies personal infrastructuring, the process of learning about how to navigate the world, what support is available, and how to obtain and design new support through various organisational infrastructures. Such infrastructures include disability services organisations, the health sector, community organisations, and friend and family networks. Our vision was to explore how a person with a disability might engage in design with volunteer designers to meet their unique needs that were not met by their existing infrastructure of organisations, products and services. Through codesign with two people and their families, we developed design artefacts such as user profiles and video stories to support communication, mutual learning, need finding and need expression. We discovered that these design artefacts were used beyond their immediate purposes of design to further support their personal infrastructuring. In this paper, we discuss how understandings of infrastructure and infrastructuring from Science and Technology Studies and Information Systems translate into familial contexts and the concept of personal infrastructuring.
Supplemental Material
- Christopher A Le Dantec and Carl DiSalvo. 2013. Infrastructuring and the formation of publics in participatory design. Social Studies of Science 43, 2: 241--264.Google Scholar
Cross Ref
- Maria Berghs, Karl Atkin, Hilary Graham, Chris Hatton, and Carol Thomas. 2016. Implications for public health research of models and theories of disability: A scoping study and evidence synthesis. In Scoping models and theories of disability. NIHR Journals Library, Southampton. Retrieved March 9, 2018 from https://www.ncbi.nlm.nih.gov/books/NBK378951/Google Scholar
- Filip Birbanin and Margot Brereton. 2016. Information sharing between family members of children with intellectual disability. In Proceedings of the 28th Australian Conference on ComputerHuman Interaction - OzCHI '16, 637--639. Google ScholarDigital Library
- Claus Bossen, Andrew Clement, Yvonne Dittrich, and Helena Karasti. 2014. Infrastructuring, collaboration and evolving socio-material practices of changing our world. In Workshop at Participatory Design Conference, 221--222. Google ScholarDigital Library
- Pelle Ehn. 2008. Participation in design things. In Proceedings of the Tenth Anniversary Conference on Participatory Design, 92--101. Retrieved November 24, 2015 from http://dl.acm.org/citation.cfm?id=1795234.1795248 Google ScholarDigital Library
- Batya Friedman. 1996. Value-sensitive design. interactions 3, 6: 16--23. Google ScholarDigital Library
- Helena Karasti. 2014. Infrastructuring in participatory design. In Proceedings of Participatory Design Conference - PDC '14, 141--150. Google ScholarDigital Library
- Helena Karasti and Karen S. Baker. 2008. Community Design: Growing one's own information infrastructure. In Proceedings of Participatory Design Conference, 217--220. Retrieved November 19, 2014 from http://dl.acm.org/citation.cfm?id=1795234.1795280 Google ScholarDigital Library
- Charlotte P. Lee. 2007. Boundary negotiating artifacts: Unbinding the routine of boundary objects and embracing chaos in collaborative work. Computer Supported Cooperative Work (CSCW) 16, 3: 307--339. Google ScholarDigital Library
- Sharon A. Livingstone-Lee, Ronald W. Skelton, and Nigel Livingston. 2014. Transit Apps for People With Brain Injury and Other Cognitive Disabilities: The State of the Art. Assistive Technology 26, 4: 209--218.Google ScholarCross Ref
- Cliff Oswick and Maxine Robertson. 2009. Boundary objects reconsidered: From bridges and anchors to barricades and mazes. Journal of Change Management 9, 2: 179--193.Google ScholarCross Ref
- S. B. Palmer, M. L. Wehmeyer, D. K. Davies, and S. E. Stock. 2012. Family members' reports of the technology use of family members with intellectual and developmental disabilities. Journal of Intellectual Disability Research 56, 4: 402--414. Retrieved from http://gateway.library.qut.edu.au/login?url=http://se arch.ebscohost.com/login.aspx?direct=true&db=afh &AN=73362475&site=ehost-live&scope=siteGoogle ScholarCross Ref
- Volkmar Pipek, Helena Karasti, and Geoffrey C. Bowker. 2017. A preface to "infrastructuring and collaborative design." Computer Supported Cooperative Work 26, 1--2: 1--5. Google ScholarDigital Library
- Volkmar Pipek and Volker Wulf. 2009. Infrastructuring: Toward an integrated perspective on the design and use of information technology. Journal of the Association for Information Systems 10, 5: 447. Retrieved November 19, 2014 from http://search.proquest.com.ezp01.library.qut.edu.au/ docview/198832498/fulltextPDF?accountid=13380Google ScholarCross Ref
- Ravihansa Rajapakse, Margot Brereton, Paul Roe, and Laurianne Sitbon. 2014. Designing with people with disabilities: Adapting best practices of DIY and organizational approaches. In Proceedings of the 26th Australian Computer-Human Interaction Conference - OzCHI '14, 519--522. Google ScholarDigital Library
- Ravihansa Rajapakse, Margot Brereton, Laurianne Sitbon, and Paul Roe. 2015. A Collaborative approach to design individualized technologies with people with a disability. In Proceedings of the Annual Meeting of the Australian Special Interest Group for Computer Human Interaction on - OzCHI '15, 29--33. Google ScholarDigital Library
- Ravihansa Rajapakse, Margot Brereton, Laurianne Sitbon, and Paul Roe. 2017. Respectful design: Facilitating codesign with people with an intellectual disability. CoDesign (in submission).Google Scholar
- Susan Leigh Star. 1988. The structure of illstructured solutions: Boundary objects and heterogeneous distributed problem solving. In Distributed Artificial Intelligence (Vol. 2). Morgan Kaufmann Publishers, San Francisco, 37--54. Google ScholarDigital Library
- Susan Leigh Star. 1999. The ethnography of infrastructure. American Behavioral Scientist 43, 3: 377--391.Google ScholarCross Ref
- Susan Leigh Star. 2010. This is not a boundary object: Reflections on the origin of a concept. Science, Technology, & Human Values 35, 5: 601-- 617.Google ScholarCross Ref
- Susan Leigh Star and Geoffrey C. Bowker. 2006. How to infrastructure. In Handbook of new media: Social shaping and consequences of ICTs. Sage.Google Scholar
- Susan Leigh Star and James R. Griesemer. 1989. Institutional ecology, "translations" and boundary objects: Amateurs and professionals in Berkeley's Museum of Vertebrate Zoology, 1907--39. Social Studies of Science 19, 3: 387--420.Google ScholarCross Ref
- Susan Leigh Star and Karen Ruhleder. 1996. Steps toward an ecology of infrastructure: Design and access for large information spaces. Information Systems Research 7, 1: 111--134. Retrieved January 19, 2015 from http://citeseerx.ist.psu.edu/viewdoc/summary?doi= 10.1.1.88.3121 Google ScholarDigital Library
- Michael Wehmeyer. 2005. Self-determination and individuals with severe disabilities: Re-examining meanings and misinterpretations. Research and Practice for Persons with Severe Disabilities 30, 3: 113--120.Google ScholarCross Ref
- Michael L Wehmeyer. 1998. Self-determination and individuals with significant disabilities: Examining meanings and misinterpretations. Journal of the Association for Persons with Severe Handicaps 23, 1: 5--16.Google ScholarCross Ref
- Michael L. Wehmeyer and Nancy W. Garner. 2003. The impact of personal characteristics of people with intellectual and developmental disability on selfdetermination and autonomous functioning. Journal of Applied Research in Intellectual Disabilities 16, 4: 255--265.Google ScholarCross Ref
Index Terms
- Design Artefacts to Support People with a Disability to Build Personal Infrastructures
Recommendations
Sharing Methods for Involving People with Impairments in Design: Exploring the Method Story Approach
CHI EA '16: Proceedings of the 2016 CHI Conference Extended Abstracts on Human Factors in Computing SystemsThe concept of method stories was proposed as an approach to document how design research methods are made to work in practice. Sharing the creation process of methods is especially valuable when working with people with impairments, as participation (...
Reframing Disability as Competency: Unpacking Everyday Technology Practices of People with Visual Impairments
CHI '20: Proceedings of the 2020 CHI Conference on Human Factors in Computing SystemsMore than a billion people in the world live with some form of visual impairment, and a wide variety of technologies are now routinely used by them in the course of 'getting on' in everyday life. However, little is known about the ways in which assistive ...
Living Disability Theory: Reflections on Access, Research, and Design
ASSETS '20: Proceedings of the 22nd International ACM SIGACCESS Conference on Computers and AccessibilityAccessibility research and disability studies are intertwined fields focused on, respectively, building a world more inclusive of people with disability and understanding and elevating the lived experiences of disabled people. Accessibility research ...
Comments