Sunil Rodger
John Vines
Janice McLaughlin
ABSTRACT
Digital technologies offer the possibility of community empowerment via the reconfiguration of public services. This potential relies on actively involved citizens engaging with decision makers to pursue civic goals. In this paper we study one such group of involved citizens, examining the evidencing practices of a rare disease charity campaigning for accessible public transport. Through fieldwork and interviews, we highlight the ways in which staff and volunteers assembled and presented different forms of evidence, in doing so reframing what is conceived as 'valid knowledge'. We note the challenges this group faced in capturing experiential knowledge around the accessibility barriers of public transport, and the trade-offs that are made when presenting evidence to policy and decision makers. We offer a number of design considerations for future HCI research, focusing on how digital technology might be configured more appropriately to support campaigning around the politics of mobility.
- Madeleine Akrich, Máire Leane, Celia Roberts and João Arriscado Nunes. 2014. Practising childbirth activism: A politics of evidence. BioSocieties 9, 2: 129--152.Google Scholar
Cross Ref
- Dan Aldridge-Neil, Helmet cameras capture bad driving. BBC News Website (1st February 2011). Retrieved 19th August 2015 from http://www.bbc.co.uk/news/uk-12334486Google Scholar
- Paul M. Aoki, R. J. Honicky, Alan Mainwaring, Chris Myers, Eric Paulos, Sushmita Subramanian, and Allison Woodruff. 2009. A vehicle for research: using street sweepers to explore the landscape of environmental community action. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '09). ACM, NY, NY, USA, 375--384. http://dx.doi.org/10.1145/1518701.1518762 Google ScholarDigital Library
- Mariam Asad and Christopher A. Le Dantec. 2015. Illegitimate Civic Participation: Supporting Community Activists on the Ground. In Proceedings of the 18th ACM Conference on Computer Supported Cooperative Work & Social Computing (CSCW '15). ACM, NY, NY, USA, 1694--1703. http://dx.doi.org/10.1145/2675133.2675156 Google ScholarDigital Library
- Ségolène Aymé, Anna Kole, Stephen Groft. 2008. Empowerment of patients: lessons from the rare diseases community. The Lancet 371 2048--2051.Google Scholar
- Madeline Balaam, Rob Comber, Ed Jenkins, Selina Sutton, and Andrew Garbett. 2015. FeedFinder: A Location-Mapping Mobile Application for Breastfeeding Women. In Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems (CHI '15). ACM, NY, NY, USA, 1709--1718. http://dx.doi.org/10.1145/2702123.2702328 Google ScholarDigital Library
- BBC News. 2014. Essex cyclist with helmet camera 'reported 60 motorist offenders'. BBC News Website (7th October 2014). Retrieved 19th August 2015 from http://www.bbc.co.uk/news/uk-england-essex-29505994Google Scholar
- Erling Björgvinsson, Pelle Ehn, and Per-Anders Hillgren. 2010. Participatory design and "democratizing innovation". In Proceedings of the 11th Biennial Participatory Design Conference (PDC '10). ACM, NY, NY, USA, 41--50. http://dx.doi.org/10.1145/1900441.1900448 Google ScholarDigital Library
- Virginia Braun and Victoria Clarke. 2006. Using thematic analysis in psychology. Qualitative Research in Psychology 3, 2: 77--101Google ScholarCross Ref
- Michel Callon and Vololona Rabeharisoa. 2008. The Growing Engagement of Emergent Concerned Groups in Political and Economic Life: Lessons from the French Association of Neuromuscular Disease Patients. Science, Technology & Human Values 33, 2: 230--261.Google ScholarCross Ref
- Carlos Cardonha, Diego Gallo, Priscilla Avegliano, Ricardo Herrmann, Fernando Koch, and Sergio Borger. 2013. A crowdsourcing platform for the construction of accessibility maps. In Proceedings of the 10th International Cross-Disciplinary Conference on Web Accessibility (W4A '13). ACM, NY, NY, USA, Article 26. http://dx.doi.org/10.1145/2461121.2461129 Google ScholarDigital Library
- Patrick Carrington, Amy Hurst, and Shaun K. Kane. 2014. Wearables and chairables: inclusive design of mobile input and output techniques for power wheelchair users. In Proceedings of the 32nd annual ACM conference on Human factors in computing systems (CHI '14). ACM, NY, NY, USA, 3103--3112. http://dx.doi.org/10.1145/2556288.2557237 Google ScholarDigital Library
- Jaime Cascio. 2005. The Rise of the Participatory Panopticon. WorldChanging (4th May 2005). Retrieved 19th August 2015 from http://www.worldchanging.com/archives/002651.htmlGoogle Scholar
- Clara Crivellaro, Rob Comber, John Bowers, Peter C. Wright, and Patrick Olivier. 2014. A pool of dreams: facebook, politics and the emergence of a social movement. In Proceedings of the 32nd annual ACM conference on Human factors in computing systems (CHI '14). ACM, NY, NY, USA, 3573--3582. http://dx.doi.org/10.1145/2556288.2557100 Google ScholarDigital Library
- Clara Crivellaro, Rob Comber, Martyn Dade-Robertson, Simon J. Bowen, Peter C. Wright, and Patrick Olivier. 2015. Contesting the City: Enacting the Political Through Digitally Supported Urban Walks. In Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems (CHI '15). ACM, NY, NY, USA, 2853--2862. http://dx.doi.org/10.1145/2702123.2702176 Google ScholarDigital Library
- Melissa Dawe. 2006. Desperately seeking simplicity: how young adults with cognitive disabilities and their families adopt assistive technologies. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '06). ACM, NY, NY, USA, 1143--1152. http://dx.doi.org/10.1145/1124772.1124943 Google ScholarDigital Library
- Carl DiSalvo, Ann Light, Tad Hirsch, Christopher A. Le Dantec, Elizabeth Goodman, and Katie Hill. 2010. HCI, communities and politics. In CHI '10 Extended Abstracts on Human Factors in Computing Systems (CHI EA '10). ACM, NY, NY, USA, 3151--3154. http://dx.doi.org/10.1145/1753846.1753940 Google ScholarDigital Library
- Carl DiSalvo, Jonathan Lukens, Thomas Lodato, Tom Jenkins, and Tanyoung Kim. 2014. Making public things: how HCI design can express matters of concern. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '14). ACM, NY, NY, USA, 2397--2406. http://dx.doi.org/10.1145/2556288.2557359 Google ScholarDigital Library
- Audubon Dougherty. 2011. Live-streaming mobile video: production as civic engagement. In Proceedings of the 13th International Conference on Human Computer Interaction with Mobile Devices and Services (MobileHCI '11). ACM, NY, NY, USA, 425--434. http://dx.doi.org/10.1145/2037373.2037437 Google ScholarDigital Library
- Paul Dourish. 2010. HCI and environmental sustainability: the politics of design and the design of politics. In Proceedings of the 8th ACM Conference on Designing Interactive Systems (DIS '10). ACM, NY, NY, USA, 1--10. http://dx.doi.org/10.1145/1858171.1858173 Google ScholarDigital Library
- Prabal Dutta, Paul M. Aoki, Neil Kumar, Alan Mainwaring, Chris Myers, Wesley Willett, and Allison Woodruff. 2009. Common Sense: participatory urban sensing using a network of handheld air quality monitors. In Proceedings of the 7th ACM Conference on Embedded Networked Sensor Systems (SenSys '09). ACM, NY, NY, USA, 349--350. http://dx.doi.org/10.1145/1644038.1644095 Google ScholarDigital Library
- Steven Epstein. 1995. The Construction of Lay Expertise: AIDS Activism and the Forging of Credibility in the Reform of Clinical Trials. Science, Technology & Human Values 20, 4: 408--437.Google ScholarCross Ref
- European Commission. 2008. COM(2008) 679 Final: Communication from the Commission to the European Parliament, the Council, the European Economic and Social Committee and the Committee of the Regions on Rare Diseases: Europe's Challenges. Retrieved 19th August 2015 from http://ec.europa.eu/health/ph_threats/non_com/docs/rare_com_en.pdfGoogle Scholar
- Torsten Felzer and Stephan Rinderknecht. 2015. Experiences of Someone with a Neuromuscular Disease in Operating a PC (and Ways to Successfully Overcome Challenges). ACM Trans. Access. Comput. 6, 2, Article 4 (March 2015), 18 pages. http://dx.doi.org/10.1145/2700436 Google ScholarDigital Library
- Eletha Flores, Gabriel Tobon, Ettore Cavallaro, Francesca I. Cavallaro, Joel C. Perry, and Thierry Keller. 2008. Improving patient motivation in game development for motor deficit rehabilitation. In Proceedings of the 2008 International Conference on Advances in Computer Entertainment Technology (ACE '08). ACM, NY, NY, USA, 381--384. http://dx.doi.org/10.1145/1501750.1501839 Google ScholarDigital Library
- Marcus Foth, Leonardo Parra Agudelo, and Robin Palleis. 2013. Digital soapboxes: towards an interaction design agenda for situated civic innovation. In Proceedings of the 2013 ACM conference on Pervasive and ubiquitous computing adjunct publication (UbiComp '13 Adjunct). ACM, NY, NY, USA, 725--728. http://dx.doi.org/10.1145/2494091.2495995 Google ScholarDigital Library
- Marcus Foth, Tommi Heikkinen, Johanna Ylipulli, Anna Luusua, Christine Satchell, and Timo Ojala. 2014. UbiOpticon: Participatory Sousveillance with Urban Screens and Mobile Phone Cameras. In Proceedings of The International Symposium on Pervasive Displays (PerDis '14). ACM, NY, NY, USA, Pages 56. http://dx.doi.org/10.1145/2611009.2611034 Google ScholarDigital Library
- Andrew Thomas Garbett, Rob Comber, Paul Egglestone, Maxine Glancy, and Patrick Olivier. 2014. Finding "real people": trust and diversity in the interface between professional and citizen journalists. In Proceedings of the 32nd annual ACM conference on Human factors in computing systems (CHI '14). ACM, NY, NY, USA, 3015--3024. http://dx.doi.org/10.1145/2556288.2557114 Google ScholarDigital Library
- Dan Witzner Hansen, Henrik H. T. Skovsgaard, John Paulin Hansen, and Emilie Møllenbach. 2008. Noise tolerant selection by gaze-controlled pan and zoom in 3D. In Proceedings of the 2008 symposium on Eye tracking research & applications (ETRA '08). ACM, NY, NY, USA, 205--212. http://dx.doi.org/10.1145/1344471.1344521 Google ScholarDigital Library
- John Paulin Hansen, Kristian Tørning, Anders Sewerin Johansen, Kenji Itoh, and Hirotaka Aoki. 2004. Gaze typing compared with input by head and hand. In Proceedings of the 2004 symposium on Eye tracking research & applications (ETRA '04). ACM, NY, NY, USA, 131--138. http://dx.doi.org/10.1145/968363.968389 Google ScholarDigital Library
- Jeanne Hayes and Elizabeth "Lisa" M. Hannold (2007). The road to empowerment: a historical perspective on the medicalization of disability. Journal of Health and Human Services Administration 30, 3: 352--377Google Scholar
- Libby Hemphill and Andrew J. Roback. 2014. Tweet acts: how constituents lobby congress via Twitter. In Proceedings of the 17th ACM conference on Computer supported cooperative work & social computing (CSCW '14). ACM, NY, NY, USA, 1200--1210. http://dx.doi.org/10.1145/2531602.2531735 Google ScholarDigital Library
- House of Commons Transport Select Committee. 2013. Access to transport for disabled people still unacceptably poor. UK Parliament Website (17th September 2003). Retrieved 19th August 2015 from http://www.parliament.uk/business/committees/committees-a-z/commons-select/transportcommittee/news/disabled-report--substantive/Google Scholar
- Rob Kitchin. 1998. 'Out of Place', 'Knowing One's Place': Space, power and the exclusion of disabled people. Disability & Society 13, 3: 343--356Google ScholarCross Ref
- Lisa Koeman, Vaiva Kalnikaité, and Yvonne Rogers. 2015. "Everyone Is Talking about It!": A Distributed Approach to Urban Voting Technology and Visualisations. In Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems (CHI '15). ACM, NY, NY, USA, 3127--3136. http://dx.doi.org/10.1145/2702123.2702263 Google ScholarDigital Library
- Mark A. M. Kramer, Erika Reponen, and Marianna Obrist. 2008. MobiMundi: exploring the impact of usergenerated mobile content -- the participatory panopticon. In Proceedings of the 10th international conference on Human computer interaction with mobile devices and services (MobileHCI '08). ACM, NY, NY, USA, 575--577. http://dx.doi.org/10.1145/1409240.1409355 Google ScholarDigital Library
- Stacey Kuznetsov and Eric Paulos. 2010. Participatory sensing in public spaces: activating urban surfaces with sensor probes. In Proceedings of the 8th ACM Conference on Designing Interactive Systems (DIS '10). ACM, NY, NY, USA, 21--30. http://dx.doi.org/10.1145/1858171.1858175 Google ScholarDigital Library
- Christopher A. Le Dantec, Mariam Asad, Aditi Misra, and Kari E. Watkins. 2015. Planning with Crowdsourced Data: Rhetoric and Representation in Transportation Planning. In Proceedings of the 18th ACM Conference on Computer Supported Cooperative Work & Social Computing (CSCW '15). ACM, NY, NY, USA, 1717--1727. http://dx.doi.org/10.1145/2675133.2675212 Google ScholarDigital Library
- James Lee. 2015. Trailblazers go undercover to investigate public transport. MDUK Website (29th April 2015). Retrieved 19th August 2015 from http://www.musculardystrophyuk.org/news/trailblazersgo-undercover-to-investigate-public-transport/Google Scholar
- Haley MacLeod, Kim Oakes, Danika Geisler, Kay Connelly, and Katie Siek. 2015. Rare World: Towards Technology for Rare Diseases. In Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems (CHI '15). ACM, NY, NY, USA, 1145--1154. http://dx.doi.org/10.1145/2702123.2702494 Google ScholarDigital Library
- Steve Mann, Jason Nolan and Barry Wellman. 2003. Sousveillance: Inventing and Using Wearable Computing Devices for Data Collection in Surveillance Environments, Surveillance & Society 1, 3: 331--355.Google Scholar
- MDUK. 2015 MDUK Trailblazers Public Transport General Survey 2015. Retrieved 19th August 2015 from https://www.surveymonkey.com/s/2KB7RW7Google Scholar
- MDUK. 2015 MDUK Trailblazers Public Transport Survey 2015 - Tell us about your recent journey! Retrieved 19th August 2015 from https://www.surveymonkey.com/s/HFXPJCHGoogle Scholar
- MDUK. 2015. MDUK Website: About Us. Retrieved 19th August 2015 from http://www.musculardystrophyuk.org/about-us/Google Scholar
- MDUK. 2011. Wheelchair Provision for Children and Adults with Muscular Dystrophy and other Neuromuscular Conditions: Best Practice Guidelines http://www.musculardystrophyuk.org/app/uploads/2015/02/wheelchair-guidelines.pdfGoogle Scholar
- Karyn Moffatt, Joanna McGrenere, Barbara Purves, and Maria Klawe. 2004. The participatory design of a sound and image enhanced daily planner for people with aphasia. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '04). ACM, NY, NY, USA, 407--414. http://dx.doi.org/10.1145/985692.985744 Google ScholarDigital Library
- Laura Montini. 2013. Health 2.0: The Power of the Internet to Raise Awareness of Rare Diseases. In Rare Diseases in the Age of Health 2.0, Rajeev K. Bali, Lodewijk Bos, Michael Christopher Gibbons, Simon Ibell (eds.). Springer, Berlin, Germany, 83--95.Google Scholar
- Tiago Moreira, Orla O'Donovan and Etaoine Howlett. 2014. Assembling dementia care: Patient organisations and social research. BioSocieties 9, 2: 173--193.Google ScholarCross Ref
- Patrick Olivier and Peter Wright. 2015. Digital Civics: Taking a Local Turn. Interactions 22, 4: 61- 63. Google ScholarDigital Library
- Chris Page. 2014. How easy is public transport access for disabled users' BBC News Website (5th August 2014). Retrieved 19th August 2015 from http://www.bbc.co.uk/news/uk-northern-ireland-Google Scholar
- Vololona Rabeharisoa, Tiago Moreira, and Madeleine Akrich. 2014. Evidence-based activism: Patients', users' and activists' groups in knowledge society. BioSocieties 9, 2: 111--128.Google ScholarCross Ref
- Vololona Rabeharisoa, Michel Callon, Angela Marques Filipe, João Arriscado Nunes, Florence Paterson, and Frédéric Vergnaud. 2014. From 'politics of numbers' to 'politics of singularisation': Patients' activism and engagement in research on rare diseases in France and Portugal. BioSocieties 9, 2: 194--217.Google ScholarCross Ref
- Tom Shakespeare. 1993. Disabled people's selforganisation: a new social movement? Disability, Handicap & Society 8, 3: 249--264Google ScholarCross Ref
- Kelly Shigeno, Sergio Borger, Diego Gallo, Ricardo Herrmann, Mateus Molinaro, Carlos Cardonha, Fernando Koch, and Priscilla Avegliano. 2013. Citizen sensing for collaborative construction of accessibility maps. In Proceedings of the 10th International Cross-Disciplinary Conference on Web Accessibility (W4A '13). ACM, NY, NY, USA, Article 24, Google ScholarDigital Library
- Constantine E. Steriadis and Philip Constantinou. 2003. Designing human-computer interfaces for quadriplegic people. ACM Trans. Comput.-Hum. Interact. 10, 2 (June 2003), 87--118. http://dx.doi.org/10.1145/772047.772049 Google ScholarDigital Library
- Alex S. Taylor, Siân Lindley, Tim Regan, David Sweeney, Vasillis Vlachokyriakos, Lillie Grainger, and Jessica Lingel. 2015. Data-in-Place: Thinking through the Relations Between Data and Community. In Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems (CHI '15). ACM, NY, NY, USA, 2863--2872. http://dx.doi.org/10.1145/2702123.2702558 Google ScholarDigital Library
- Nick Taylor, Justin Marshall, Alicia Blum-Ross, John Mills, Jon Rogers, Paul Egglestone, David M. Frohlich, Peter Wright, and Patrick Olivier. 2012. Viewpoint: empowering communities with situated voting devices. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '12). ACM, NY, NY, USA, 1361--1370. http://dx.doi.org/10.1145/2207676.2208594 Google ScholarDigital Library
- Carol Thomas. 2004. Developing the Social Relational in the Social Model of Disability: a theoretical agenda. In Implementing the Social Model of Disability: Theory and Research, Colin Barnes and Geof Mercer (eds.). The Disability Press, Leeds, UK, 32--47.Google Scholar
- Amit Ranjan Trivedi, Abhash Kumar Singh, Sundara Tejaswi Digumarti, Deepak Fulwani, and Swagat Kumar. 2013. Design and Implementation of a Smart Wheelchair. In Proceedings of Conference on Advances In Robotics (AIR '13), Article 96, 6 pages. http://dx.doi.org/10.1145/2506095.2506140 Google ScholarDigital Library
- Vasilis Vlachokyriakos, Rob Comber, Karim Ladha, Nick Taylor, Paul Dunphy, Patrick McCorry, and Patrick Olivier. 2014. PosterVote: expanding the action repertoire for local political activism. In Proceedings of the 2014 conference on Designing interactive systems (DIS '14). ACM, NY, NY, USA, 795--804. http://dx.doi.org/10.1145/2598510.2598523 Google ScholarDigital Library
- Wesley Willett, Paul Aoki, Neil Kumar, Sushmita Subramanian, and Allison Woodruff. 2010. Common sense community: scaffolding mobile sensing and analysis for novice users. In Proceedings of the 8th international conference on Pervasive Computing (Pervasive'10). ACM, NY, NY, USA, 301--318. http://dx.doi.org/10.1007/978--3--642--12654--3_18 Google ScholarCross Ref
- Jacob O. Wobbrock, Shaun K. Kane, Krzysztof Z. Gajos, Susumu Harada, and Jon Froehlich. 2011. Ability-Based Design: Concept, Principles and Examples. ACM Trans. Access. Comput. 3, 3, Article 9 (April 2011), 27 pages. http://dx.doi.org/10.1145/1952383.1952384 Google ScholarDigital Library
Index Terms
- Technology and the Politics of Mobility: Evidence Generation in Accessible Transport Activism
Recommendations
The Bangladesh Justice Audit
ICEGOV '17: Proceedings of the 10th International Conference on Theory and Practice of Electronic GovernanceThe Bangladesh Constitution guarantees human rights, freedom, equality, justice and rule of law for all citizens. Article 33(1) ensures the rights for each citizen to legal support and article 35(3) affirms that every person accused of a criminal ...
From Technology to Social Development: Applying a Public Value Perspective to Digital Government in Local Governments in Mexico
dg.o '17: Proceedings of the 18th Annual International Conference on Digital Government ResearchThe main goal of any digital government initiative is to create public value [34]. Although this sentence represents a powerful idea, there is no clear evidence about the causality route from technology to the creation of public value for citizens and ...
PosterVote: expanding the action repertoire for local political activism
DIS '14: Proceedings of the 2014 conference on Designing interactive systemsOnline and digital technologies support and extend the action repertoires of localized social movements. In this paper we examine the ways by which digital technologies can support "on-the-ground" activist communities in the development of social ...
Comments