saumya ravihansa bandara rajapakse bsc (hons) information … ravihansa... · 2018. 11. 14. ·...

MAKING COLLABORATIONS TO DESIGN

PERSONALISED TECHNOLOGIES WITH

PEOPLE WITH AN INTELLECTUAL

DISABILITY

Saumya Ravihansa Bandara Rajapakse

BSc (Hons) Information and Communication Technology,

University of Colombo, Sri Lanka

Submitted in fulfilment of the requirements for the degree of

Doctor of Philosophy

School of Electrical Engineering and Computer Science

Science and Engineering Faculty

Queensland University of Technology

2018

Making Collaborations to Design Personalised Technologies

with People with a Disability

ii



iii

Keywords

People with a Disability, Personal Infrastructuring, Boundary Objects, Collaboration,

Do-It-Yourself Design, Personalisation, Action Research, Codesign, Self-

determination.



iv

Abstract

People with a disability have unique needs that are often not met in the marketplace.

The need to support people with intellectual and physical disabilities to source personalised

technologies is the principal motivation for this research. People with a disability often liaise

with others to procure services and technologies. The premise of this research is that

communities with necessary skillsets may be willing to codesign personalised support with

people with a disability. The growing pool of relatively inexpensive DIY (Do-It-Yourself)

programmable tools enables people to design more personalised things. Maker communities

that host hobbyists who use DIY tools could contribute with willing volunteers and their design

approaches to design personalised technologies with people with a disability. Disability

Services Organizations (DSOs) liaise with other organisations to support people with a

disability to procure personalised support. University students sometimes undertake design

tasks with other communities as a partial requirement of their academic work. This research

aims at exploring ways to facilitate collaboration between hobbyists, DSOs and university

students. It explores how such communities could scope common design pathways while

enhancing self-determination of people with a disability.

In-depth interviews and observations with maker communities, DSOs, university

academics and people with a disability were undertaken to understand their perspectives and

ascertain their willingness to collaborate. Inter-party discussions were then conducted in the

next phase to determine how to organise collaborations and to understand any barriers to be

overcome. A need to facilitate matching the needs and interests of people with a disability to

the interests and capabilities of makers has emerged. In the third phase, the research team

codesigned a set of design artefacts with people with a disability to communicate their context

and design needs to designers as a way of overcoming barriers to collaboration.

This research proposes a ‘respectful design’ approach built on mutual learning, respect

and empowerment. It places people with a disability at the centre of design, so they are more

self-determined. The design artefacts acted as vehicles for infrastructuring – the process of

navigating different local infrastructures towards fruitful ends. The term ‘personal

infrastructuring’ is introduced to recognize the personal and context-sensitive process of

creating and utilising infrastructures in order for a person to participate in the world. It involves

making continuous agreements and compromises with different communities.

This research contributes a novel viewpoint for collaborations at the familial level. It

contributes design artefacts and methods that enable different communities to negotiate design

pathways. Most importantly, this research contributes an approach that seeks to enable people

with a disability to be in control of their technology choices.



v

Table of Contents

Keywords ................................................................................................................................ iii

Abstract ................................................................................................................................... iv

Table of Contents ......................................................................................................................v

List of Figures ......................................................................................................................... ix

List of Tables ............................................................................................................................x

List of Publications ................................................................................................................. xi

List of Abbreviations ............................................................................................................. xii

Statement of Original Authorship ......................................................................................... xiii

Acknowledgements ............................................................................................................... xiv

Chapter 1: Introduction ...................................................................................... 1

1.1 Research Question and Objectives .................................................................................5 1.1.1 Research Question ................................................................................................5 1.1.2 Research Objectives .............................................................................................6

1.2 Research Papers ..............................................................................................................6

1.3 Thesis Outline .................................................................................................................8

Chapter 2: Literature Review ............................................................................. 9

2.1 Overview ........................................................................................................................9

2.2 Designing for the Individual ...........................................................................................9 2.2.1 Accessibility, Usability and Universal design ....................................................10 2.2.2 Design Personalisation .......................................................................................12

2.3 DIY Design ...................................................................................................................14 2.3.1 Origins and Features ...........................................................................................14 2.3.2 Tools and Technologies ......................................................................................15 2.3.3 Design Approaches .............................................................................................16 2.3.4 DIY Design with People with a Disability .........................................................17

2.4 Engaging with People with Different Abilities .............................................................19 2.4.1 Codesign .............................................................................................................19 2.4.2 Creative Engagement Methods ...........................................................................20 2.4.3 Sensitive Settings ...............................................................................................21 2.4.4 Role of the Proxies .............................................................................................22 2.4.5 Enhancing Self-Determination ...........................................................................22 2.4.6 Collaborations with People with a Disability .....................................................23

2.5 Infrastructuring .............................................................................................................26 2.5.1 What is Infrastructure? .......................................................................................26 2.5.2 Elements of an Infrastructure .............................................................................26 2.5.3 Process of Infrastructuring .................................................................................28 2.5.4 Boundary Objects ...............................................................................................30

2.6 Summary .......................................................................................................................31

Chapter 3: Research Design .............................................................................. 32

3.1 Epistemological Position ..............................................................................................32



vi

3.2 Research Methodology ................................................................................................ 33 3.2.1 Action Research ................................................................................................. 33 3.2.2 Phenomenology and Ethnography ..................................................................... 36 3.2.3 Codesign ............................................................................................................ 38 3.2.4 Data Analysis ..................................................................................................... 39

Chapter 4: Designing with People with Disabilities: Adapting Best Practices of DIY and Organizational Approaches................................................................. 41

Statement of Contribution of Co-authors for Thesis by Published Paper .............................. 41

Preamble ................................................................................................................................. 42

Abstract .................................................................................................................................. 43 Author Keywords ......................................................................................................... 43

4.1 Introduction .................................................................................................................. 44

4.2 Literature Review ......................................................................................................... 45

4.3 Methods ........................................................................................................................ 47

4.4 Findings ........................................................................................................................ 48 4.4.1 Motivations ........................................................................................................ 48 4.4.2 Design Practices ................................................................................................. 49 4.4.3 Need for Collaborations ..................................................................................... 49

4.5 Discussion and conclusion ........................................................................................... 50

Chapter 5: A Collaborative Approach to Design Individualised Technologies with People with a Disability ................................................................................... 52


Preamble ................................................................................................................................. 53


5.1 Designing for the Individual ........................................................................................ 55

5.2 Past Collaborations ...................................................................................................... 56

5.3 Infrastructuring ............................................................................................................. 57

5.4 Methods ........................................................................................................................ 58

5.5 Exploring Tensions ...................................................................................................... 59 5.5.1 Different Motivations ........................................................................................ 59 5.5.2 Sensitive and accurate need finding ................................................................... 60 5.5.3 Managing expectations ...................................................................................... 61 5.5.4 Health and Safety ............................................................................................... 62

5.6 Towards Sustainable Collaborations ............................................................................ 62

Chapter 6: Respectful Design: Facilitating Codesign with People with a Cognitive or Sensory Impairment and Makers ..................................................... 64


Preamble ................................................................................................................................. 65


6.1 Introduction .................................................................................................................. 66



vii

6.2 Related Work ................................................................................................................69 6.2.1 Understanding the Needs and Wants of People ..................................................69 6.2.2 Method Stories ...................................................................................................72 6.2.3 Respectful Engagement ......................................................................................73

6.3 Two Cases of Codesign ................................................................................................74 6.3.1 Participant Recruitment ......................................................................................75 6.3.2 Primary Participants: Kate and Ann ...................................................................76 6.3.3 Designing with Kate ...........................................................................................77 6.3.4 Designing with Ann ............................................................................................86

6.4 Discussion .....................................................................................................................90 6.4.1 Continuous Negotiation ......................................................................................90 6.4.2 Respectful Engagement ......................................................................................92 6.4.3 Mutual Learning .................................................................................................93 6.4.4 Design Profiles to Engage Designers .................................................................95

6.5 Respectful Design .........................................................................................................96

6.6 Conclusion ....................................................................................................................99

Acknowledgements ...............................................................................................................100

Chapter 7: Design Artefacts to Support People with a Disability to Build Personal Infrastructures ........................................................................................ 102

Statement of Contribution of Co-authors for Thesis by Published Paper .............................102

Preamble ...............................................................................................................................103

Abstract .................................................................................................................................104 Author Keywords........................................................................................................105

7.1 Introduction ................................................................................................................105

7.2 Related Work ..............................................................................................................107 7.2.1 Infrastructure and Infrastructuring ...................................................................107 7.2.2 Infrastructuring and Design ..............................................................................109 7.2.3 A Framework for Infrastructuring ....................................................................110 7.2.4 Boundary Objects .............................................................................................112

7.3 Our Case: A Collaboration .........................................................................................113 7.3.1 Contextual Inquiry ............................................................................................113 7.3.2 Inter-party discussions ......................................................................................114 7.3.3 Codesigning Artefacts ......................................................................................115 7.3.4 Inspiring Designers ...........................................................................................117

7.4 Personal Infrastructuring ............................................................................................118 7.4.1 Background Work ............................................................................................119 7.4.2 Preparatory Work .............................................................................................120 7.4.3 Identifying Challenges .....................................................................................120 7.4.4 Design Artefacts ...............................................................................................121 7.4.5 In-situ Design ...................................................................................................123

7.5 Discussion ...................................................................................................................123 7.5.1 Infrastructuring in Familial Contexts ...............................................................123 7.5.2 Utility of Design Artefacts ...............................................................................124 7.5.3 Design Artefacts as Boundary Objects .............................................................125

7.6 Conclusion ..................................................................................................................126

Chapter 8: Conclusion ..................................................................................... 127 8.1.1 Understanding Different Communities of Practice (O1) ..................................127



viii

8.1.2 Exploring Tensions in Collaboration (O2) ...................................................... 129 8.1.3 Codesign with the Families (O3, O4) .............................................................. 130 8.1.4 Personal Infrastructuring as an Approach to Collaboration (O5) .................... 133

8.2 Limitations and Difficulties ....................................................................................... 134

8.3 Future Directions ........................................................................................................ 135 8.3.1 Prototype and Artefact Development............................................................... 135 8.3.2 Points of Infrastructure .................................................................................... 135 8.3.3 Applicability in Different Cases and Cultures ................................................. 136

Bibliography ........................................................................................................... 137

Appendices .............................................................................................................. 151

Appendix A: Writing Style – Putting People First ............................................................... 151



ix

List of Figures

Figure 1. A simplified version of the framework for infrastructuring (adapted

from Pipek & Wulf, 2009) ........................................................................... 29

Figure 2. Generation and structuring of boundary objects resulting in

standardised objects or systems (adapted from Star, 2010, pp 615) ............ 31

Figure 3. Action research cycles and phases of the research ..................................... 35

Figure 4. Contextual representation of communities involved in the

collaborative co-design project .................................................................... 61

Figure 5. Design partners in the collaborative project ............................................... 75

Figure 6. Kate's one-page profile ............................................................................... 82

Figure 7. An example slide from the photo-story completed by Matt ....................... 83

Figure 8. Kate choosing favourite interests using picture board with Matt’s

support.......................................................................................................... 84

Figure 9. Ann selecting pictures for photo-story with Alice ...................................... 88

Figure 10. Phases of the collaboration to support makers, design researchers

and a Disability Service Organisation to codesign with people with a

disability and their family .......................................................................... 106

Figure 11. A simplified version of the framework for infrastructuring by Pipek

and Wulf (Pipek & Wulf, 2009) (pp 458) .................................................. 111

Figure 12. The set of design artefacts created. They include a photo-story,

video-story, one-page profile and a detailed log. ....................................... 116

Figure 13. A slide from Kate's photo-story. Photo-story shows opportunities

and challenges associated with different situations of the individual's

life. ............................................................................................................. 116

Figure 14. Kate's one-page profile. (Note that diagnostic information is only

given when the person or family felt it was necessary and wished to

do so. In Kate's case, the family made this decision as Kate was not

able to communicate her preference on this issue) .................................... 117

Figure 15. A framework for personal infrastructuring ............................................. 118

Figure 16. Design artefacts supporting communication, mutual learning,

negotiation and self-determination ............................................................ 125



x

List of Tables

Table 1 - Overview of the research publications .......................................................... 7



xi

List of Publications

• Chapter 4: Rajapakse, R., Brereton, M., Roe, P., & Sitbon, L. (2014).

Designing with people with disabilities: Adapting best practices of DIY

and organisational approaches. In Proceedings of the 26th Australian

Computer-Human Interaction Conference on Designing Futures the Future of

Design - OzCHI ’14 (pp. 519–522). New York, New York, USA: ACM Press.

• Chapter 5: Rajapakse, R., Brereton, M., Sitbon, L., & Roe, P. (2015). A

Collaborative approach to design personalised 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 (pp.

29–33). New York, New York, USA: ACM Press.

• Chapter 6: Rajapakse, R., Brereton, M., Sitbon, L., Roe, P., Koplick, S.,

Mohebbi, Shervin. Respectful design: Facilitating codesign with people

with different cognitive and sensory abilities. Under review at International

Journal of CoDesign.

• Chapter 7: Rajapakse, R., Brereton, M., Sitbon, L., Roe, P., Koplick, S.,

Mohebbi, Shervin. Design Artefacts to Support People with a Disability to

Build Personal Infrastructures. In Proceedings of DIS Conference, Hong

Kong 2018)



xii

List of Abbreviations

DIY: Do-It-Yourself

DSO: Disability Services Organization

HCI: Human-Computer Interaction

IS: Information Systems

PD: Participatory Design

PI: Primary Investigator

STS: Science and Technology Studies



xiii

Statement of Original Authorship

The work contained in this thesis has not been previously submitted to meet

requirements for an award at this or any other higher education institution. To the best

of my knowledge and belief, the thesis contains no material previously published or

written by another person except where due reference is made.

Signature:

Date: November 2018

QUT Verified Signature



xiv

Acknowledgements

To begin with, I would like to thank my supervisors Margot Brereton, Laurianne

Sitbon and Paul Roe for their guidance and immense support throughout the project.

Thank you, Oksana and Bernd for reviewing my thesis and final seminar. I sincerely

thank personnel from the disability services organisations and maker communities

who allowed me to study their organisations and supported me while I was learning

new things. I would like to express my utmost gratitude to those wonderful families

that supported me throughout the research as participants. I must also express my

appreciation of QUT and research staff for providing me with financial support and

advice regarding candidature. My former and current colleagues in the research group

– Steve, Ellya, Haziq, Hadi, Elizabeth, Kate, Fiona, Aloha, Jessie, Cara, Tshering,

Alessandro, Riga, Diego – and my current and past office roommates including Essam,

Mahnoosh, Owen, Thilina, Tara – are remembered with gratitude for making my PhD

journey enjoyable by providing their immense support and companionship. Teaching

at QUT helped me realise my lifetime interest in sharing knowledge, so thank you

QUT and students for being supportive. Adapting to the environment here as an

international student would have been rather difficult, without the assistance of QUT

student support services, so thank you, Maria, Swati and your colleagues. I would also

like to thank the staff at Royal Brisbane Hospital for taking care of me during my bouts

of illness. The writing circles conducted by Karyn and her help with language

throughout my study period was immensely helpful as this enabled me to record my

work by writing sensibly. Thank you Caru for your stellar editing work to make my

thesis more readable. I would also like to recall fond memories with my previous

educational institutions – University of Colombo School of Computing and

Dharmaraja College, Kandy in Sri Lanka. I must mention that it would not have been

possible for me to complete this thesis successfully if not for my friends here in

Brisbane and Sri Lanka who were there for me in difficult times; so special thanks to

Susith, Sam, Harshana, Thilini, Nipun, Rajeev, Bhashinee, Mahasen and Thamarasi.

Ultimately though, none of this would have been possible without the love of my

parents, brothers, relatives and my fiancée Chinthika, so thank you to all. I would like

to dedicate this thesis to my father, Mahinda who passed away in August 2017. He

always believed in me and would be the happiest person to see my achievement.

Chapter 1: Introduction 1

Chapter 1: Introduction

Products and services that are tailored to people’s unique needs and abilities

make it easier for them to manage their lives (Hook et al., 2014; Hsieh, Munson,

Kaptein, Oinas-Kukkonen, & Nov, 2014; Johnson, Bianchi-Berthouze, Rogers, & van

der Linden, 2013). People with a disability, however, find it difficult to source such

personalised products or services through the marketplace due to their unique interests

and abilities. The motivation for this research arises from the need for exploring ways

that support people with a disability to source personalised technologies and services.

It focuses on the need for self-determination for people with physical and intellectual

disabilities, so they have control over design choices. Different communities –

including those that already support people with a disability to design technology

support – could possibly aid to enhance design personalisation. This research explores

if and how such different communities can collaborate to design personalised support

for and with people with a disability.

Collaborations that leverage different skillsets of many communities have been

effective in addressing unique needs of the individuals in the past. For example, in the

Robohand project, a South African tradesman who lost his fingers in an industrial

accident liaised with an American creator of movie props and special effects who had

also designed puppeteering mechanisms to magnify hand movements (Robohand,

2013). The tradesman wanted to develop a better prosthesis, and the American maker

was eager to help. The tradesman sent sketches of the possible prosthesis, and the

maker used his skills in digital 3D modelling to create designs. The tradesman printed

these designs using his 3D printer and tried them out. Prototyping continued until the

tradesman had made a useful prosthesis. Learning of a child with amniotic band

syndrome, who needed a similar prosthesis in order to develop a useful grasp, the

tradesman then set about creating a prosthesis for this child. Other families of children

with the same condition then collaborated with the tradesman after hearing his story.

Further support from other organisations eventually led to prosthetics being used by

more than 200 children in need.

A group of university art students co-designed devices using sensors, actuators

and microcomputers with people with a disability to control household appliances,

2 Chapter 1: Introduction

communication devices and aesthetic gadgets (Mcallister, 2012). They codesigned

customised devices to suit the unique needs of each individual and found it rewarding

in terms of the produced devices and design process. Not Impossible Labs

collaboratively designed prosthetic supports with the help of designers, hackers,

disability services organisations, and government authorities (Kirkpatrick, 2015). Not

Impossible Labs is an organisation that works to find technological solutions for

individuals who are in need of devices as in the case of a graffiti artist who lost all

physical movement abilities, apart from his eye movement. While the benefits of such

collaborations are often highlighted, the complexities associated with the inter-party

negotiations is seldom discussed. Much emphasis is often placed on the design process

and artefacts. This research elaborates on the complex interplay between different

communities who endeavour to design personalised technologies with people with a

disability.

With the growth of the use of inexpensive DIY hardware and software tools,

hobbyists can potentially design personalised technologies with greater ease. Maker

communities are spaces where such hobbyists get together and use communal DIY

tools to design things together (Lindtner, Hertz, & Dourish, 2014). They could

potentially contribute to designing personalised technologies with people with a

disability drawing upon their design approaches and willing volunteers. A local maker

community expressed their interest to design with people with a disability as they saw

a new and an interesting design opportunity to expand their practices.

Queensland University of Technology (QUT) has been working with a not-for-

profit Disability Services Organisation (DSO) for two years to codesign technologies

with people with a disability. DSOs support people with a disability to procure services

and products by liaising with diverse communities and organisations. University

students sometimes engage with people with a disability through the DSOs to design

technologies, and they earn academic credit for completing the design tasks. The DSO

was keen to explore more open design approaches as their service clients (people with

a disability) sometimes needed more personalised technologies. While the maker

community was interested in expanding their practices to help a broader community,

the DSO had experience in supporting people with a disability, and the university could

potentially contribute design expertise through the students, academics and

researchers.


In-depth interviews and observations were conducted in the first phase of the

research with DSO personnel, university academics and maker community members

to develop an understanding of their design approaches and to understand the actual

potential for collaboration. It turned out that the different parties had complementary

qualities and showed a potential to work together. After exploring the qualities of

different communities, this research identified challenges within the collaboration

which came to light through inter-party discussions held in the second phase. The

challenges included (i) the motivations of makers might not align with meeting the

needs of people with a disability, as their interest mainly lay in tinkering; (ii) while

designers (makers and students) were well disposed towards working with people with

a disability, there was still a challenge in matching their skills to the needs of people

with a disability in a timely manner, in part because no preliminary conversations had

been held to establish design briefs or preliminary requirements; (iii) student projects

needed to conform to somewhat restrictive timeframes, and (iv) different approaches

had to be adopted to cope with health and safety issues. One of the student groups

decided to withdraw from the collaboration due to the lack of design scope. They

instead chose to work on a different project with more certainty. Timely and accurate

exploration and presentation of the needs and wants of people, therefore, appeared to

be crucial in initiating and sustaining the collaboration.

While the designers needed design briefs, a rapid approach was difficult, as

understanding people required time and design briefs cannot evolve instantly, but

rather through collaboration. So, the third phase used an approach to understand needs

and interests of people with a disability in their settings. A set of codesign methods

were employed, enabling people with a disability to exercise control over the design

process. Use of different media such as visuals supported them to express themselves

better. They co-created design profiles to communicate their needs and settings to

prospective designers. These design profiles included picture-based stories, video

clips, one-page profiles and detailed logs. The design process for each person

encompassed unique activities, for example, whereas one participant expressed her

interests better with the support of photographs, the other was comfortable talking

through. The design process had to be adjusted, slowed down, and iterated when

necessary to accommodate individual abilities and interests (Schön, 1990).


The design profiles were used beyond their initial use in design towards

supporting other interactions. Designers were able to refer to the design profiles to

ideate and negotiate design pathways together with people with a disability. Families

used them for other purposes such as introducing their adult children to support

workers, communities and health services. Each party learned about each other’s

capacities to negotiate realistic design avenues. The design artefacts enabled people

with a disability to express their interests and abilities, while not exposing their

personal details to external parties. Their voice is often unheard and being dominated

by others as they are often talked over by even people who care for them. By being

able to take ownership of both the design process and the design artefacts, they were

able to bypass the proxies. This shifted the power of making decisions that often

resides with parties such as parents, caregivers, friends or support workers towards

people with a disability. However, parties such as parents engaged in the design

process according to the need of the situation, for example, interpreting

communications of their adult children during the codesign activities. The interplay

between different communities is shaped by how they negotiate with each other

regarding motivations, restrictions and resources (M. F. Brereton, Cannon,

Mabogunje, & Leifer, 1996; Bucciarelli & Bucciarelli, 1994). Designers, sometimes,

use co-created artefacts of different nature to share ideas and negotiate with other

designers and communities (Wagner, 2000; Winner, 1980). The co-created design

artefacts in this research supported communities to arrive on a common ground and to

balance the distribution of power between different communities.

This research contributes a respectful design approach that builds on mutual

learning, respect, and empowerment by facilitating self-expression. It emphasizes the

need for self-determination so that people with a disability have greater control over

the design decisions. The traditional view of seeing settings that involve people with a

disability as ‘sensitive’ and needing ‘care’ is critiqued. This research instead proposes

that any setting should be considered as ‘sensitive’ requiring ‘care’ in understanding

unique personal characteristics and contextual qualities. The other contribution is an

adaptation of the concept of infrastructuring from Science and Technology Studies and

Information Systems in a familial context. The collaboration was seen as an effort at

personal infrastructuring, a form of infrastructuring where social, technological and

organisational aspects of different infrastructures are aligned continuously (Star &


Bowker, 2006). Personal infrastructuring encompasses making compromises and

negotiating common design avenues through respecting personal circumstances,

supported by design artefacts.

This research presents an approach that supports the drive towards minimizing

the power imbalance in settings that involve marginalised groups – in this case, people

with a disability. People with a disability could have more control by engaging through

adapted engagement methods and design artefacts. Future collaborations could

potentially benefit from the insights from personal infrastructuring. It may provide an

alternative viewpoint where people could perhaps better organise and sustain

collaborations with different communities. Essentially, the provision of more

customised technologies and ability to choose design pathways could enhance the

quality of life of people – especially of those whose voice is often unheard or

dominated. This thesis would benefit the CHI community by presenting an approach

and a suite of artefacts that enable a marginalized group to actively engage in design

and create alternative and unique futures with different communities. The STS and

CSCW communities could benefit from reading how a concept like infrastructuring

could also be useful in understanding and working-out fruitful design pathways in

familial and personal settings.

1.1 RESEARCH QUESTION AND OBJECTIVES

This research follows an action research approach to explore ways of sustaining

collaborative design with people with a disability, caregivers, maker communities,

DSOs, university academics and students. In so doing, this research firstly aims to

understand the characteristics of each community. Tensions and alignments among the

collaborators are explored through organising inter-party discussions. A codesign

approach – respectful design – was employed as a way of resolving the tensions to

facilitate the collaboration. Finally, it presents an approach of personal infrastructuring

by translating conventional application of infrastructuring into collaborative design.

1.1.1 Research Question

Q1. How to amalgamate different infrastructures to develop a support network to

design personalised technologies with people with a disability?


1.1.2 Research Objectives

The following objectives were defined to answer the research question.

O1. Understand the diverse motivations, challenges and qualities of different

communities such as maker communities, people with a disability and their families,

disability services organisations, university academics and students, through in-depth

discussions and observations.

O2. Explore challenges in the collaboration due to different motivations and

characteristics through conducting collaborative discussions.

O3. Understand the unique needs, wants and capabilities of individuals with a

disability by engaging them in design.

O4. Create design artefacts to facilitate inter-party communications.

O5. Develop a view of infrastructuring to understand the interplay between

communities that develop a support network on a familial level.

1.2 RESEARCH PAPERS

Overview and objectives of each publication are listed in Table 1. A preamble is

provided for each paper in the respective chapter, connecting one publication to the

next.


Table 1 - Overview of the research publications

Paper and Overview Objectives

CH

AP

TE

R 4

Rajapakse, R., Brereton, M., Roe, P., & Sitbon, L. (2014). Designing with

people with disabilities: Adapting best practices of DIY and

organisational approaches. In Proceedings of the 26th Australian

Computer-Human Interaction Conference on Designing Futures the Future of

Design - OzCHI ’14 (pp. 519–522). New York, New York, USA: ACM Press.

This paper discusses characteristics of different communities such as maker

communities, DSOs and the university in light of a potential collaboration.

Interviews and observations found that communities have synergetic features

and are keen to collaborate.

O1 C

HA

PT

ER

5

Rajapakse, R., Brereton, M., Sitbon, L., & Roe, P. (2015). A Collaborative

approach to design personalised 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 (pp. 29–33).

New York, New York, USA: ACM Press.

This paper highlights the challenges that arise when different parties begin to

work together to achieve a common goal. Inter-party discussions with the

communities indicated that the tensions include different motivations, need

for accurate and careful need finding, adhering to strict timelines and differing

health and safety approaches.

O2

CH

AP

TE

R 6

Rajapakse, R., Brereton, M., Sitbon, L., Respectful design: Facilitating

codesign with people with different cognitive and sensory abilities. Under

review at International Journal of CoDesign.

This paper reviews previous notions of “sensitive settings” to propose a

design approach – respectful design – built on mutual learning, respect, and

empowerment. Known design interventions were appropriated to engage

people with a disability and their caregivers. A set of design artefacts (design

profiles) were codesigned to introduce the individuals to the designers.

O3, O4


CH

AP

TE

R 7

Rajapakse, R., Brereton, M., Sitbon, L., Design Artefacts to Support People

with a Disability to Build Personal Infrastructures In Proceedings of DIS

Conference, Hong Kong 2018. ACM).

This paper reflects on the collaboration to propose a view of personal

infrastructuring. It captures nuances of the work done by people with a

disability and their families to develop a support network in search of

personalised technologies. The collaborators codesigned tangible artefacts to

overcome the challenge of making a timely match between the skills of the

designers and the needs of people with a disability. While being used as

design probes, design artefacts supported communication, mutual learning

and negotiation during the infrastructuring work.

O5

1.3 THESIS OUTLINE

The next chapter of the thesis will include a critical discussion on related work

to highlight the gaps in knowledge. Theoretical frameworks that inspired the selection

of methods and overall design of the research are detailed in Chapter 3. The research

will be presented based on four research papers, of which two are published, one is

accepted for publication, and one is under review. Chapters 4 to 7 will consist of the

research papers along with a preamble. The final chapter will sum-up the findings from

the research papers and discuss their limitations and future directions. References for

each paper and other parts in the thesis are included in the references list at the end of

the thesis.

Chapter 2: Literature Review 9

Chapter 2: Literature Review

2.1 OVERVIEW

Related prior work will be discussed in this chapter to find gaps in knowledge

and to guide the research methods. Firstly, the importance of tailoring designs to suit

individual requirements, needs and capabilities will be discussed in Section 2.2.

Fundamental principles of accessibility, usability and universal design will be

discussed to provide an overview of the ways in which disability is understood and

framed. In Section 2.3, DIY design approaches that provide opportunities for design

individualisation will be discussed. A brief history of DIY design, its features, tools

and technologies will be outlined, followed by an account of the design approaches

commonly used in the DIY culture. The final part of this section will discuss the

applicability of DIY design when designing with people with a disability.

The concepts and approaches related to designing with people with a disability

are discussed in Section 2.4. Usefulness of codesign in engaging with people with a

disability and how people have adopted known design methods to enhance self-

expression will be discussed in this section. Infrastructuring will be discussed in

Section 2.5 as a possible viewpoint to see collaboration with different communities

who are inclined to design with people with a disability. This review will provide a

foundation for the reader to grasp the story of this research better. Each paper presented

in chapters 4 to 7, however, includes a more focused literature review with regard to

the specific topic discussed.

2.2 DESIGNING FOR THE INDIVIDUAL

Design of technologies has shifted from a purely designer-centred approach

towards a more human-centred approach, giving birth to fields such as Human Centred

Design, User Centred Design, and Participatory Design. The early design interventions

introduced with the rise of the industrial revolution often treated people as passive

users who were asked or sometimes forced to ‘use’ designs that others had created

‘for’ them (Robertson & Simonsen, 2012). This viewpoint changed after the mid-

nineteenth century as more technologies were introduced to home and workplace.

Emerging views of human and user-centred design put the ‘end user’ at the centre of

10 Chapter 2: Literature Review

the design instead, as practitioners started to believe that people are experts at

arranging their own lives (Abras, Maloney-Krichmar, & Preece, 2004; Visser,

Stappers, van der Lugt, & Sanders, 2005). A sufficient involvement of end-users,

however, could not still be seen in design activities, as the design was completed

entirely by designers.

During the early 1970s, following the actions of trade union activists in

Scandinavia towards automated processes, designers have recognised the need for

workers to ‘have a say’ in design (Kensing & Greenbaum, 2012). Projects like

UTOPIA in the early 1980s introduced the Participatory Design (PD) concept that

placed more emphasis on democratising design of technologies. PD emphasises not

only the practical need to involve end users in design to benefit from their expertise

but also the ethical compulsion to involve those who are actually impacted by design

(Ehn & Bannon, 2012). Modern design approaches aim to involve the people who will

be using the designs in the design process, through ideating and designing together.

While increasing attention is being paid to the inclusion of people in the design

process, people who have physical and intellectual disabilities are often excluded from

technology use and design due to their unique physical, cognitive and sensory needs

(Hook et al., 2014). A discussion of concepts such as accessibility, usability and

universal design may be useful in understanding this power imbalance.

2.2.1 Accessibility, Usability and Universal design

Since the 1970s, the attitudes and views concerning disability have changed as

people realised the value of self-determination (World Health Organization, 2011).

Disability was traditionally viewed as a biological phenomena, where having bodily

impairments meant someone is disabled (Berghs, Atkin, Graham, Hatton, & Thomas,

2016). Much criticism was raised on this view as it neglects the social aspects that

often contributes towards the ease or difficulty of functioning in life. The International

Classification of Functioning, Disability and Health (ICF) defines disability as any

problem that can occur in one or many areas of human functioning. These areas include

impairments (of proper body function), activities (ability to execute activities), and

participation (engaging in social activities) that can arise during the interaction of an

individual with the environment. Self-organisation of people with a disability and the

tendency to view disability both as a social and a human rights issue encouraged lively


discussions on accessibility, usability and universal design (Beswick et al., 2008;

Storbeck & Pittman, 2008; Velema, Ebenso, & Fuzikawa, 2008).

Accessibility is the possibility for a person to take part in some desirable activity,

which depends on physical mobility and geographic proximity (Iwarsson & Ståhl,

2003). It is a relative concept that depends on the relationship between the person and

the environment.

“Accessibility is the encounter between the person’s or group’s functional

capacity and the design and demands of the physical environment” (Iwarsson

& Ståhl, 2003, p. 61).

Accessibility refers to the compliance with established norms and standards set

out by governing bodies to ensure the inclusion of everyone, and therefore, it often

takes an objective viewpoint (Iwarsson & Ståhl, 2003). Drawing up such standards or

norms requires careful consideration of personal and environmental factors and their

juxtaposition. Accessibility needs to be visible in respect of approaching the physical

environment, information and societal services, whether at home, in the

neighbourhood or in society.

While often used simultaneously with the term accessibility, usability has a

slightly different meaning, as it concerns more the fulfilment of functional

requirements and relates to the fitness-for-use of a product or service (Iwarsson &

Ståhl, 2003). For example, although there may be computer laboratories that are

designed to accommodate people with a disability (by ensuring accessibility) if the

computers cannot be adequately used by them, usability is not present. Unlike

accessibility, usability depends on how well a person can use a product to perform an

intended task, which depends on the aptitude of the person rather than on norms or

standards. Apart from the personal and environmental factors, usability concerns

activities that people engage in. Such personal, environmental and activity-related

factors need to be brought together to enhance the usability of the design.

Accessible design assumes two different populations: ‘normal’ and ‘disabled’.

Universal design opposes this viewpoint and sees the entire population as a composite

of individuals who have equal rights but different needs, wants and capabilities.

Universal design is the best approximation of a design to meet the needs of the

maximum possible number of users (Iwarsson & Ståhl, 2003). A common term used


to describe the universal design in European countries is ‘design for all’, emphasising

the importance of inclusion.

“Universal design is about democracy – about design for everybody; children

and adults, elderly people, men and women, people of different nationalities,

and so on.” (Iwarsson & Ståhl, 2003, p. 61).

The world is moving towards the development of products and services that are

more accessible to practically any person despite bodily or intellectual challenges.

Incorporating sufficient flexibility could allow people to engage actively in the use of

any design (Barlet & Spohn, 2012). While universal design can accommodate a larger

heterogeneous population, it might still be challenging to address the unique needs,

wants and capabilities those who have severe physical and intellectual disability

(Crabtree et al., 2003). In such situations, adaptations might be required to make

designs more accessible and usable for each person. Such adaptations need to be

minimally disruptive and easily configurable so that they can blend in well with

everyday life.

2.2.2 Design Personalisation

While technologies can uplift the quality of life of people with a disability, more

than 35% of the innovations are withdrawn from use and end up in drawers and

cabinets (Bates & Istance, 2003; Goette, 1998; Koester, 2003; Phillips & Zhao, 1993;

M J Scherer, 1996). No more than 60% of those identified with the need to use

supportive technologies are using them (Fichten, Barile, Asuncion, & Fossey, 2000).

Lack of personalisation, the complexity of the operation and minimal provisions for

configuration are the key factors leading to such high abandonment rates (Dawe, 2006;

Hurst & Tobias, 2011; Wobbrock, Kane, Gajos, Harada, & Froehlich, 2011).

People have unique needs and wants that need to be catered to in the design of

anything. People have their own ways of accomplishing tasks, making it necessary to

understand their capabilities and characteristics to design with them. For example, a

design that works for a person who has autism may not be suitable for another who

also has autism. As Kientz et al. (2007, p. 29) put “If you’ve seen one child with

autism, you’ve seen one child with autism”. Working closely with people and allowing

them to express their ideas freely helps to gain understanding about their lives as

exemplified by the ATHENE (Assistive Technologies for Healthy Living in Elders:


Needs Assessment by Ethnography) project (Wherton et al., 2012). Researchers used

cultural probes (Gaver, Dunne, & Pacenti, 1999), contextual interviews and

observations to unveil lived experiences of older adults who came from diverse ethnic

and social backgrounds, family circumstances, health conditions and living needs.

They have compiled rich accounts of individuals that highlight their social, cultural

and historical backgrounds, their experiences of ageing and ill-health, the people in

their lives, things of importance to them, and about the materiality and capability. The

researchers created profiles using this information that also included possible design

opportunities for each participant1. Balaam et al. saw positive results in developing

technologies that are closely tied to individual motivations (Balaam et al., 2011). The

participants, who required stroke rehabilitation support, indicated that the designs were

much more rewarding than the commonly available technologies. Engaging closely

with four children with autism, Frauenberger et al. (2016) were able to co-create

personalised objects. Shinohara & Tenenberg (2007) worked with a blind college

student to understand the nuances of her expression, causes of and workarounds for

task failures. They were able to devise a narrowly focused case study that supported

the design of personalised technologies. Considering the uniqueness of each case that

involves people with a disability, Slegers et al. (2014) and Hendriks et al. (2015) call

for a design approach that follows tailored codesign techniques to suit unique

individual needs.

The design process could be straightforward if the needs, desires and dreams of

people can be unveiled and shown clearly. This identification and subsequent

fulfilment of needs and possibilities are at the heart of design personalisation. Not only

the design process but also the requirement elicitation process needs to be personalised

as people have unique ways of expressing themselves. For example, one person may

like to use drawings as the mode of expression while another may use photography.

Understanding people is challenging when they have different cognitive and sensory

abilities than those of the research team. For example, how can one support a non-

verbal person who has limited physical movements to express himself/ herself?

Personalized design approaches could be useful in countries such as Australia

where people with a disability are provided with financial support through government

1 http://www.atheneproject.org/Case%20Studies.html


schemes such as National Disability Insurance Scheme (NDIS) (May et al., 2018).

People are not often prescribed the forms of support they receive. Instead, they need

to develop networks so that they could procure personalized products and services.

Easily configurable DIY (Do-It-Yourself) technologies such as microcontrollers, 3D

printing and sensors, are making it easier to build more customised designs. Such

technologies enable not only designers to build flexible technologies rapidly, but also

the non-experts who are using them to engage in design work (Hurst & Kane, 2013;

Hurst & Tobias, 2011). People could design things that would suit their needs and

wants, preferably at low cost.

Design personalisation for people with a disability is still an emerging area for

exploration. While provisions are available for the design of tailored technologies, it

is doubtful that many people with a disability have a ‘proper say’ in the process of

design. Often the technologies are developed based on the inputs from the secondary

sources such as family members, support workers and DSOs. This research

specifically aims at exploring ways that recognize and respect personal interests while

collaborating with diverse communities when designing customized technologies.

2.3 DIY DESIGN

2.3.1 Origins and Features

With the increasing popularity of DIY technologies, people are beginning to

develop new technologies freely, giving rise to maker communities. A maker

community is a group of people who get together regularly and work on common

interests ranging from making toys to developing high-end robots (Harrod 2011). Such

communities are also known as hackerspaces, fablabs, makerspaces, DIY communities

and hacker communities. The term ‘makerspace’ is used for communities that gather

and interact in physical spaces instead of working exclusively online (Moilanen 2012).

Such physical workspaces offer social and technological resources that enable people

to collaborate on the production of new technologies (Lindtner et al. 2014). Although

makerspaces are centred upon physical workspaces, most of them possess websites or

online applications as well to encourage their members to discuss and share ideas.

Origin of maker communities can be traced back to the early 1990’s. Currently,

there are over 500 active hackerspaces in the world that work in various fields of work

such as the arts, architecture, and technology. These spaces are owned and operated


by the members and are open to outsiders at no cost or for a membership/ weekly fee

(Moilanen 2012). While membership fees remain the primary source of funding,

donations from government, companies and individuals supplement it. Equipment and

tools are often sourced from companies and individuals as donations or as discarded

items. The members share tools and ideas with a strong emphasis on technology-

oriented inventions. Makerspaces are described as ‘third’ places where people gather,

as distinct from their homes or workplaces, purely because they have fun by hanging

out with like-minded hackers who work on common interests (Oldenburg 2001).

Makerspaces should not and cannot be defined or described rigidly as they have an

informal structure. The maker culture encompasses the practice of sharing knowledge

and using DIY tools and technologies collectively. Approach to design may be unique

to each maker community.

2.3.2 Tools and Technologies

Equipment like 3D printers, sensors, microcontroller kits, laser cutters and

soldering irons are familiar sights in a maker community. The members (makers) often

use such tools to manipulate (hack) existing gadgets or to build new ones (Jackson &

Kang, 2014). Makey-Makey is such a microcontroller kit that promotes ‘Nature-based

Interfaces’ (Silver, Rosenbaum, & Shaw, 2012). It uses a circuit to map computer

keyboard keys to everyday objects (like an apple, metal lid, water, and soil). Makey-

Makey is connected to the computer through a USB connection, and no special

software or programming is required. Non-experts could design creative artefacts such

as banana pianos, and piano stairs2. 3D printing is becoming popular, especially among

makerspaces as they have become cheaper and easier to use (Ludiwg et al., 2014).

Now it is possible to assemble a 3D printer with ready-made parts. Customised

hardware interfaces can be created that would be impossible or very difficult to make

without a 3D printer. While metal and plastic are commonly used as materials to print

designs, the ongoing research explores new materials such as needle felted yarn

(Hudson, 2014). The invention of such new materials can open up new ways to

produce more creative designs through the rapid-prototyping ability of 3D printers.

With the availability of such DIY tools, people could easily and quickly develop

2 https://www.youtube.com/watch?v=rfQqh7iCcOU


tailored prototypes. It can elevate the enthusiasm of people, so they tend to become

involved more actively in design (Chorianopoulos et al., 2012).

2.3.3 Design Approaches

Maker communities follow informal and flexible design practices where almost

anyone could get involved and contribute their knowledge while learning from others.

This approach is referred to as “opportunistic design” because existing artefacts and

site-specific tools are used to create new artefacts (Hartmann, Doorley, & Klemmer,

2008). Such artefacts are not only functionally useful but are also aesthetically pleasing

as design becomes more of personal activity. They embody a unique blend of the

‘needs’ and ‘wants’ of the creator, making it a ‘creation’ instead of a ‘product’

(Nitsche, Quitmeyer, Farina, Zwaan, & Nam, 2014). Makers thrive on dismantling,

modifying, repairing and re-using things to assemble new products (Jackson & Kang,

2014). Their design approach is based on a process of trial and error, and they are quite

content to conduct experiments with their designs (Hartmann et al., 2008).

Makerspaces provide learning platforms that enable everyone to design and

share their newly acquired knowledge with others (Lindtner et al., 2014); this fresh

knowledge encourages people to explore new design directions. Makerspaces are

introducing a new form of citizen engagement that turns passive consumers into active

contributors. This engagement could be beneficial for a wider community if the

collaborative design practices are propagated beyond the boundaries of maker

communities.

Buechley et al. (2009) argued that DIY design can no longer be treated as a

standalone approach limited to hobbyists. They pointed out that many HCI researchers

are now heavily involved in investigating the DIY design possibilities and have

become a part of DIY communities. The DIY approach is capable of democratising

technology, allowing everyone to take part in designing things (Tanenbaum, Williams,

Desjardins, & Tanenbaum, 2013). It could open up new pathways in design through

flexible approaches that allow freedom to designers. It facilitates the designing of

technologies that enhance creativity, pleasure, usefulness and expression.

“Thriving on top of collaborative digital systems, the Maker movement both

implicates and impacts professional designers. As users move more towards


personalization and reappropriation, new design opportunities are created for

HCI” (Tanenbaum et al., 2013, p. 2603).

2.3.4 DIY Design with People with a Disability

Makers have created custom controllers for people with a disability3,4 that have

raised their autonomy and quality of life. For example, a father had collaborated with

a designer who possessed the expert knowledge to design a prosthetic hand for his son

by using a 3D printer at home5. Use of tools such as high-level kits and 3D printers

has enabled more people – especially within a makerspace – to engage deeper in design

activities. The use of such tools allows people to gain valuable technical expertise that

empowers them to develop their designs at a low cost (Weibert et al. 2014).

Highlighting the advantages of appropriation and customisation, researchers

have shown the importance of designing supportive technologies from the readily

available material, pointing out the many ways to do it (Werner, 1987; Willkomm,

2005). Mass online collections of freely available design instructions and blueprints

such as Make Magazine Blog (http://blog.makezine.com), Instructables

(http://www.instructables.com), and Thingiverse (http://www.thingiverse.com) enable

experts and non-experts alike to engage in design (Buehler et al., 2015; Hurst &

Tobias, 2011). Hurst and Tobias have pointed out that people with a disability would

like to make their own technologies or appropriate current technologies that they use.

They showed that DIY design could assist at all stages of technology adoption (E. M.

Rogers, 2010) such as awareness of technology, inclination to adopt, decision to adopt,

implementation of design and confirmation of appropriateness. This use of DIY

techniques in Assistive Technology is termed as DIY-AT (Do It Yourself Assistive

Technology).

Following this line of thinking, Hurst created two (2) technologies that allowed

novices to design technologies for and with people with a disability (Hurst & Kane,

2013). VizTouch is an application that creates 3D printable mathematical tactile

graphics to be used by people with visual impairments. Easy Make Oven is an

3 http://hackaday.com/2013/02/08/3d-printed-prosthetic-hand-helps-out-for-about-150 4 http://hackaday.com/2013/06/20/building-custom-game-controllers-for-people-with-physical-

disabilities/ 5 http://www.npr.org/blogs/health/2013/06/18/191279201/3-d-printer-brings-dexterity-to-children-

with-no-fingers

http://blog.makezine.com/http://www.instructables.com/http://www.thingiverse.com/


interactive tabletop that allows taking 3D pictures of real objects and modifying those

collaboratively using natural gestures. Design toolkits that provide the means to create

technologies rather than developing the complete designs help people to express

themselves better and be creative in their own ways (Axelrod et al., 2011; Balaam et

al., 2011). In a study that used a Makey-Makey kit as a stimulator to ideate new

technologies, Rogers et al. (2014) found that older people were able not only to

collaborate intensely and freely and discuss their family's and others' relationship with

technology but were also to master the technology. Easy to use tools allow both experts

and non-experts to be on the same page in the design process, and that encourages

enhanced knowledge and resource sharing. The toolkits make it possible for the

different communities of practice to come together and engage in the design process

at every stage.

While DIY-AT offers a means of design personalisation and reduces lead time

in professional design, it is not devoid of social and technical barriers. Lack of self-

confidence in their ability to design, reluctance to invest time without an assurance of

a beneficial outcome, issues related to aesthetics, practicality, robustness and safety

are some critical concerns of those who participate (Hook et al., 2014). Hook et al.

showed that implementing rapid prototyping projects and developing practical services

for communities that support non-experts to become co-designers holds the key to

achieving success in DIY-AT.

The choice of DIY, however, is not straightforward. The designers need to

clearly identify unique interests and needs of people with a disability before

developing an appropriate DIY technology. This needs to be done through close

dialogue between people with a disability and their social networks empowering the

person with a disability. This research specifically aims at involving volunteer makers

who have experience and interest in working with DIY technologies to design

personalised technologies with people with a disability. The more flexible and open

design approaches of such communities could better support the design of customized

technologies. This research explores ways in which researchers can involve volunteer

makers through supporting communication of the unique interests and needs of people

with a disability and matching with skills and interests of makers through various

design artefacts.


2.4 ENGAGING WITH PEOPLE WITH DIFFERENT ABILITIES

2.4.1 Codesign

When companies started using technology, designers devised techniques such as

contextual inquiry to ‘study’ their users and then translate those findings into system

requirements and designs. After the initial stage of requirement gathering, the

involvement of the ‘end user’ was minimal until the product’s design was finalized

(Sanders & Stappers, 2008). The users were sometimes disappointed with the product

as the designers could not always translate the findings accurately. Even when the

translation was accurate, such short-term engagement with users could not provide a

sufficiently good idea for the designers to design effectively. This resulted in

frustrations with the products as they did not meet the needs and wants of the end users

satisfactorily. Although software designers started following iterative design

approaches, the participants were still at their mercy as they did not have adequate

control over the design. In response to this, worker unions in Scandinavian countries

protested in the early 1970s, demanding to have some control over the design of

products that were intended to be used by them (Robertson & Simonsen, 2012).

Designers then initiated projects like UTOPIA to design computer tools and

environments to improve the working conditions and quality of work life of the labour

force (Ehn, 1989). Such projects popularized the Participatory Design approach that

considers users as active partners in design rather than as passive research/ design

subjects. Much of the action that occurred in the PD landscape was co-creative in that

the designers and non-designers worked collaboratively to develop solutions. Such

activities are now widely known as codesign, co-creation or collective design and are

widely practised as means of engaging end-users actively in design.

“…professional designers in every field have failed in their assumed

responsibility to predict and to design-out the adverse effects of their projects.

These harmful side effects can no longer be tolerated and regarded as

inevitable if we are to survive the future. There is certainly a need for new

approaches to design if we are to arrest the escalating problems of the man-

made world and citizen participation in decision making could possibly

provide a necessary reorientation. Hence this conference theme of ‘user

participation in design’” (Cross, 1972, p. 11).


Co-design provides a platform to understand contexts of people with different

cognitive and sensory abilities and how to work with them (Hussain, 2010; Hussain,

Sanders, & Steinert, 2012). It provides an opportunity for designers to engage closely

with participants, enabling them to capture participants’ unique traits and subtleties of

their complex lifestyles. Previous projects have produced positive outputs in respect

of both design artefacts and engagement (Botero & Hyysalo, 2013; De Couvreur &

Goossens, 2011; Francis, Balbo, & Firth, 2009). Researchers and designers have used

some creative methods to engage participants in design projects. Such projects often

shed light on new methods and models of participation for both experts and non-

experts alike (M. Brereton, Sitbon, Abdullah, Vanderberg, & Koplick, 2015).

2.4.2 Creative Engagement Methods

Researchers often appropriate known engagement methods when working with

people with different cognitive and sensory abilities as their capacity to interpret and

interact with the world may be unique (Slegers et al., 2014). They may have difficulties

in communicating, recalling events, engaging in actions, processing abstractions and

acting on social cues, upon which almost every codesign technique is built. The design

engagement methods need to be adjusted to cope with different kinds of

communicative and cognitive abilities (Hendriks et al., 2015; Slegers et al., 2014).

Traditional need-finding techniques such as interviews and observations could prove

to be inadequate and inappropriate. For example, having a semi-structured interview

with a person with an intellectual disability may be exhausting for both the participant

and researcher and may end up being ineffective.

Use of a combination of artefacts such as daily logs, maps, audio recorders and

drawing boards as need-finding tools have been useful in capturing the needs and

wants of participants with unique cognitive and sensory abilities (Crabtree et al., 2003;

Wherton et al., 2012). These were used as cultural probes (Gaver et al., 1999) to get

an understanding of the lives of former psychiatric patients living in residential care

settings when developing computer support services for them (Crabtree et al., 2003).

The participants were asked to complete a set of activities in their own time, allowing

them freedom of expression. This approach provided researchers with a rich pool of

data from the perspective of participants. The cultural probes, however, “provide no

‘silver bullet’ for design: they do not tell designers what to build or provide a


convenient recipe for translating fieldwork insights into technical applications”

(Crabtree et al., 2003, pp 9).

Researchers have used visual representations to supplement ethnography,

especially techniques such as interviews and observations (Kane, Linam-Church,

Althoff, & McCall, 2012). While some participants were able to participate in some of

the activities, the others could not, owing to the varying levels of their abilities. Walton

et al. (2012) used photography as a means of expression for people with intellectual

disability to help them converse about social inclusion. Participants were asked to take

pictures of important events, places and people and those photos were later interpreted

and discussed to explore their lives. This activity led to an increased social awareness

within the community and urged researchers to take a more in-depth view of social

activities. Engaging in physical activities like taking photos rather than participating

in discussions and interviews may provide a higher sense of achievement and more

opportunities for engagement (Antaki, 2012).

The tools used to investigate context may differ from one participant to another

(Kane et al., 2012). Hussain et al. (2012) pointed out that research in care settings

could be challenging owing to complex human, social, cultural and religious factors,

as well as financial, timeframe related and organisational factors. The design process

needs to accommodate changing needs and interests to develop a positive rapport with

people. Many unexpected and creative adaptations or appropriations could sometimes

occur after the initial design. These developments could result due to the complex

social interactions among participants, proxies, designers, researchers and external

parties, which were overlooked earlier in the design process; or they may arise as

consequences of continuous work on prototype design. Such design-after-design (Ehn,

2008) activities demand that researchers and designers be more vigilant and flexible.

2.4.3 Sensitive Settings

Settings involving people with a disability, marginalised people, older people,

hospital patients, and prisoners have been termed as ‘sensitive’ in past work (Crabtree

et al., 2003). This could be a result of the differences in the way researchers and others

interpret the world. While ‘care’ is required in describing such settings, it does not

make such settings exclusively sensitive as any social research could be sensitive due

to its typically complex characteristics.


Brereton et al. (2014) argue that active engagement, mutual learning and

reciprocity are key elements in approaching a community or an individual. Any

community can be woven with complex connections between many socio-material

elements. Researchers need to respect and care the unique personal characteristics and

contextual qualities when engaging with people, despite the nature of the participants.

Both the researchers and people need to learn from each other so that ‘sensitivities’ are

minimised. Hussain et al. (2012) emphasised the importance of building a sound

relationship with participants in design. They claim that without such a connection, it

is challenging to conduct codesign as the participants need to feel sufficiently

motivated and confident to take part in the design. To build a good relationship,

designers need to patiently spend a significant amount of time with the participants so

they could learn about people’s lives and surroundings (Holone & Herstad, 2013).

Such an approach is crucial for codesign and would produce appropriate and beneficial

solutions for local situations and culture (L. Suchman, 2002).

2.4.4 Role of the Proxies

A proxy may be a family member, a social worker, an occupational therapist or

a caregiver of the person with a disability. They support people with a disability to

express their thoughts, requests and feelings (Francis et al., 2009; Scaife, Rogers,

Aldrich, & Davies, 1997). Proxies are active agents in shaping the future use of designs

as they have the responsibility of specifying and supporting the operation of

technologies for the person with a disability. Brereton et al. (2015a) emphasised that

while proxies provide a sense of context from their perspective, the person with a

disability may have differing views. Consulting proxies for useful information such as

technology adoption may be helpful to get a basic understanding. Researchers need to

explore creative ways of supporting the expression of the person with a disability who

are at the centre of the design. Proxies could act as co-designers rather than as

representatives to create meaningful designs. Viewpoints of both proxies and

individuals with a disability need to be carefully considered and balanced to produce

rewarding and sustainable design outcomes.

2.4.5 Enhancing Self-Determination

With the shift of power relations in HCI, the ‘user’ is no longer treated as a test

subject for research but is considered as a valuable contributor to the design. They


possess the expertise regarding their environments that researchers do not usually

have. The people who will be most affected by design ought to have sufficient control

over what is being designed. Deep engagement, interdisciplinarity, individuality and

practicality are the key elements in enabling people with a disability to have control

over design (M. Alper, Hourcade, & Gilutz, 2012). Deep engagement entails engaging

people with a disability and their close network of concerned people in the design.

Interdisciplinarity implies creating appropriate designs, through tapping into diverse

pools of knowledge. Customization is crucial as people have unique abilities, needs

and interests. Technologie

saumya ravihansa bandara rajapakse bsc (hons) information … ravihansa... · 2018. 11. 14. ·...

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