A respectful design approach to facilitate codesign with people with cognitive or sensory impairments and makers

ABSTRACT People with cognitive or sensory impairments (CSI) often have abilities, needs and desires that are not catered for by conventional service provision. This presents opportunities for volunteer makers to help co-create alternative futures with them. We describe a codesign process with people with CSI, their caregivers and family members, design researchers and makers. First, we focus on recruitment of design clients with CSI and the volunteer designer-makers, as recruitment is often overlooked in reporting. We explore ways of matching makers and their skills with design clients. We used codesign methods with our participants that suited their communication abilities and interests. Design props supported them to express and communicate their needs to design researchers, while limiting disclosure of personal information. Our findings indicate that codesign work with people with CSI involves (1) negotiating access, (2) mutual learning to create shared understanding and trust, (3) developing communication and participation through valuing unique abilities and interests, and (4) using design props to engage makers. We contribute an approach of respectful design, which emphasises mutual learning, self-expression and self-determination for people with CSI. This approach supports people with CSI to express themselves and assists their communication with potential volunteer makers and service providers.

[1]  N. Sheehan.  Indigenous Knowledge and Respectful Design: An Evidence-Based Approach , 2011, Design Issues.

[2]  Christopher A. Le Dantec,et al.  Strangers at the Gate: Gaining Access, Building Rapport, and Co-Constructing Community-Based Research , 2015, CSCW.

[3]  Alessandro Soro,et al.  A Noticeboard in "Both Worlds" Unsurprising Interfaces Supporting Easy Bi-Cultural Content Publication , 2015, CHI Extended Abstracts.

[4]  Daniel G. Cabrero.  Participatory design of persona artefacts for user eXperience in non-WEIRD cultures , 2014, PDC '14.

[5]  Sofia Hussain,et al.  Empowering marginalised children in developing countries through participatory design processes , 2010 .

[6]  K. Slegers,et al.  CoDesign with people living with cognitive and sensory impairments , 2015 .

[7]  Margot Brereton,et al.  A Collaborative Approach to Design Individualized Technologies with People with a Disability , 2015, OZCHI.

[8]  Oussama Metatla,et al.  Designing with and for people living with visual impairments: audio-tactile mock-ups, audio diaries and participatory prototyping , 2015 .

[9]  Jung-Joo Lee,et al.  Against Method: The Portability of Method in Human-Centered Design , 2012 .

[10]  O WobbrockJacob,et al.  Ability-Based Design , 2011 .

[11]  Michael L. Wehmeyer,et al.  Self-Determination and Individuals with Significant Disabilities: Examining Meanings and Misinterpretations , 1998 .

[12]  J. Harris,et al.  The use, role and application of advanced technology in the lives of disabled people in the UK , 2010 .

[13]  Margot Brereton,et al.  Designing with people with disabilities: adapting best practices of DIY and organizational approaches , 2014, OZCHI.

[14]  Yvonne Rogers,et al.  Does he take sugar?: moving beyond the rhetoric of compassion , 2013, INTR.

[15]  Ross Isaac,et al.  Strangers at the Gate , 1995 .

[16]  Tom Rodden,et al.  Probing the Probes , 2002 .

[17]  Pelle Ehn,et al.  Participation in design things , 2008, PDC.

[18]  P. Olivier,et al.  Empathy, participatory design and people with dementia , 2012, CHI.

[19]  A. Turnbull,et al.  Self-Determination for Individuals with Significant Cognitive Disabilities and Their Families , 2001 .

[20]  Andrea Grimes Parker,et al.  Enabling empathy in health and care: design methods and challenges , 2014, CHI Extended Abstracts.

[21]  S. Schleien.  Photovoice: A Collaborative Methodology Giving Voice to Underserved Populations Seeking Community Inclusion , 2014 .

[22]  Christopher Frauenberger,et al.  Creating creative spaces for co-designing with autistic children: the concept of a , 2016, PDC.

[23]  M. Wehmeyer,et al.  The Impact of Personal Characteristics of People with Intellectual and Developmental Disability on Self‐determination and Autonomous Functioning , 2003 .

[24]  Jo Herstad,et al.  Three tensions in participatory design for inclusion , 2013, CHI.

[25]  Margot Brereton,et al.  Beyond ethnography: engagement and reciprocity as foundations for design research out here , 2014, CHI.

[26]  Krzysztof Z. Gajos,et al.  Ability-Based Design: Concept, Principles and Examples , 2011, TACC.

[27]  J. Hughes,et al.  Designing with Care: Adapting Cultural Probes to Inform Design in Sensitive Settings , 2003 .

[28]  Jacob Buur,et al.  Taking Video beyond 'Hard Data' in User Centred Design , 2000 .

[29]  M. Wehmeyer.  Self-Determination and Individuals with Severe Disabilities: Re-Examining Meanings and Misinterpretations , 2005 .

[30]  Karin Slegers,et al.  Participatory design with people living with cognitive or sensory impairments , 2014, CHI Extended Abstracts.

[31]  Christopher Frauenberger,et al.  Designing Smart Objects with Autistic Children: Four Design Exposès , 2016, CHI.

[32]  Patrizia Marti,et al.  In Praise of Beauty and Enchantment: Setting the Scenery of Respectful Design , 2014, MIDI '14.

[33]  E. Deci,et al.  Self-Determination Theory: Basic Psychological Needs in Motivation, Development, and Wellness , 2017 .

[34]  Shaun K. Kane,et al.  What we talk about: designing a context-aware communication tool for people with aphasia , 2012, ASSETS '12.

[35]  Karin Slegers,et al.  Codesign with people living with cognitive or sensory impairments: a case for method stories and uniqueness , 2015 .

[36]  Liam J. Bannon,et al.  The turn to practice in HCI: towards a research agenda , 2014, CHI.

[37]  Gregory D. Abowd,et al.  Pervasive Computing and Autism: Assisting Caregivers of Children with Special Needs , 2007, IEEE Pervasive Computing.

[38]  Margot Brereton,et al.  Design after design to bridge between people living with cognitive or sensory impairments, their friends and proxies , 2015 .

[39]  Scott R. Klemmer,et al.  Hacking, Mashing, Gluing: Understanding Opportunistic Design , 2008, IEEE Pervasive Computing.

[40]  M. Steinert,et al.  Participatory Design with Marginalized People in Developing Countries: Challenges and Opportunities Experienced in a Field Study in Cambodia , 2012 .

[41]  Jeremy Myerson,et al.  A designer's approach: how can autistic adults with learning disabilities be involved in the design process? , 2015 .

[42]  Joseph P. Wherton,et al.  Designing assisted living technologies ‘in the wild’: preliminary experiences with cultural probe methodology , 2012, BMC Medical Research Methodology.

[43]  Jayne Wallace,et al.  Exploring Respectful Design Directions for Indigenous Communities , 2013, 2013 International Conference on Culture and Computing.

[44]  Sandrine Balbo,et al.  Towards co-design with users who have autism spectrum disorders , 2009, Universal Access in the Information Society.

[45]  M J Maloney,et al.  The importance of empathy as an interviewing skill in medicine. , 1991, JAMA.

[46]  Batya Friedman,et al.  Value-sensitive design , 1996, INTR.

[47]  Anthony J. Hornof,et al.  Designing for the "Universe of One": Personalized Interactive Media Systems for People with the Severe Cognitive Impairment Associated with Rett Syndrome , 2017, CHI.

[48]  Alan Cooper,et al.  The Inmates are Running the Asylum , 1999, Software-Ergonomie.

[49]  Stephanie Wilson,et al.  Codesign for people with aphasia through tangible design languages , 2015 .

[50]  R. Sennett.  Respect in a World of Inequality , 2003 .