-
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
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Making Collaborations to Design Personalised Technologies
with People with a Disability
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Making Collaborations to Design Personalised Technologies
with People with a Disability
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Keywords
People with a Disability, Personal Infrastructuring, Boundary
Objects, Collaboration,
Do-It-Yourself Design, Personalisation, Action Research,
Codesign, Self-
determination.
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Making Collaborations to Design Personalised Technologies
with People with a Disability
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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.
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Making Collaborations to Design Personalised Technologies
with People with a Disability
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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
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Making Collaborations to Design Personalised Technologies
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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
Statement of Contribution of Co-authors for Thesis by Published
Paper .............................. 52
Preamble
.................................................................................................................................
53
Abstract
..................................................................................................................................
54 Author Keywords
.........................................................................................................
55
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
Statement of Contribution of Co-authors for Thesis by Published
Paper .............................. 64
Preamble
.................................................................................................................................
65
Abstract
..................................................................................................................................
66 Author Keywords
.........................................................................................................
66
6.1 Introduction
..................................................................................................................
66
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Making Collaborations to Design Personalised Technologies
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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
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Making Collaborations to Design Personalised Technologies
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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
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Making Collaborations to Design Personalised Technologies
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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
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Making Collaborations to Design Personalised Technologies
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List of Tables
Table 1 - Overview of the research publications
.......................................................... 7
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Making Collaborations to Design Personalised Technologies
with People with a Disability
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)
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Making Collaborations to Design Personalised Technologies
with People with a Disability
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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
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Making Collaborations to Design Personalised Technologies
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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
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Making Collaborations to Design Personalised Technologies
with People with a Disability
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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.
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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.
-
Chapter 1: Introduction 3
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).
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4 Chapter 1: Introduction
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 &
-
Chapter 1: Introduction 5
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?
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6 Chapter 1: Introduction
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.
-
Chapter 1: Introduction 7
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
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8 Chapter 1: Introduction
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
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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
-
Chapter 2: Literature Review 11
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
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12 Chapter 2: Literature Review
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:
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Chapter 2: Literature Review 13
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
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14 Chapter 2: Literature Review
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
-
Chapter 2: Literature Review 15
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
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16 Chapter 2: Literature Review
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
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Chapter 2: Literature Review 17
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/
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18 Chapter 2: Literature Review
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.
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Chapter 2: Literature Review 19
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).
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20 Chapter 2: Literature Review
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
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Chapter 2: Literature Review 21
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.
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22 Chapter 2: Literature Review
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
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Chapter 2: Literature Review 23
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