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Design as an Agent of Children's Rights? Inclusive Mobility Design for Children with Disabilities



This chapter introduces foundational knowledge and tools to support those advocating the rights of children with disabilities to enter into discussion with the field of Design, recognising its role as an active and direct agent of children's rights. Five interrelated 'designerly ways' are discussed to explore how design can act as an agent acknowledging, integrating and facilitating the rights of children with disabilities. The field of inclusive paediatric mobility design is focused upon to provide context-specific insights. Two key directions are outlined regarding the transitioning and prioritisation of designerly ways, to help optimise Design as an agent of children's rights.
Design as an Agent of Children's Rights?
Inclusive Mobility Design for Children with Disabilities
Cara Shaw and Farnaz Nickpour
This chapter introduces foundational knowledge and tools to support those advocating the rights
of children with disabilities to enter into discussion with the field of Design, recognising its role
as an active and direct agent of children’s rights. Five interrelated ‘designerly ways’ are discussed
to explore how design can act as an agent acknowledging, integrating and facilitating the rights of
children with disabilities. The field of inclusive paediatric mobility design is focused upon to
provide context-specific insights. Two key directions are outlined regarding the transitioning and
prioritisation of designerly ways, to help optimise Design as an agent of children’s rights.
Inclusive Design; Children’s Rights; Assistive Technology; Paediatric Mobility; Designerly Ways.
Interrelationships Between Children’s Rights, Disability and Design
Introducing Children’s Rights and Disability
Both the Convention on the Rights of the Child (CRC) and the Convention on the Rights of People
with Disabilities (CRPD) state that every disabled child has the right to develop to their maximum
extent possible, including the fullest possible social integration and individual development(Art.
23, CRC). Despite this, availability and access to assistive technology (AT) and interventions
which facilitate such development (also a right under CRPD Art. 20) varies widely across the
globe, and in the majority of cases remains a neglected area of healthcare, policy, and design
(Holloway et al., 2018). The term ‘AT’ refers to a broad range of products and services designed
to maintain or improve functioning and independence to enhance quality of life (Newell, 2003) for
both children and their families. Despite global efforts, there is clearly still significant need and
opportunity for improvement in the design and provision of interventions for children with
disabilities (Heather et al., 2016).
The CRC and the CRPD aim to protect and promote a set of internationally mutual beliefs and
understandings around the fundamental entitlements of children with disabilities. However, the
social imaginaries (Jasanoff, 2015), narratives and cultural constructions (Hollos, 2002)
surrounding the notions of ‘childhood’ and ‘disability’ differ widely and fundamentally around the
world (Archard, 2014). Moreover, the evolution of such concepts throughout history has left a trail
of ‘models of disability’ and ‘concepts of childhood’ which will inevitably continue to evolve in
parallel to changes in society (Cooper, 2020). Such flexibility is likely to have a profound impact
upon how these seemingly rigid conventions are interpreted and implemented, and how such
notions are entangled, reflected, and preserved in the design of interventions for children with
disabilities around the world (Brown, 2001). On a rudimentary level, the CRC and the CRPD offer
roadmaps to realise children’s most basic rights, but on a deeper level, they could be utilised as an
opportunity to engage in constructive, creative, critical and vigorous debate, to challenge and
stretch their very content, and to contemplate and reform what could be, and what should be
(Hagan, 2020). Furthermore, several of the General Comments of the CRPD committee refer to
the need for professionals to engage in inclusive practices, which in this case could include better
training for design professionals.
Introducing Design and ‘Designerly Ways’
Design is widely recognised as an agent of physical embodiment, material culture and creative
problem solving, through delivering physical products and services. However, when exploring the
relationship of design with children's rights and disability, it is crucial to acknowledge the
theoretical foundations and the wider contributions of the design field in its entirety. Relating to
design mainly through the lens of ‘applied and physical deliverables’ not only compromises the
full understanding of design as a discipline (including its theories, methodologies and processes),
it also risks obscuring the broader interrelations and potentially significant contributions between
the fields of design and children’s rights on multiple levels.
Definitions, processes and outputs of ‘design’ vary substantially across different sectors and
contexts, leaving no commonly agreed terminological foundation to explain or constrain it (Love,
2002). Design has thus become a consistent panacea to deal with all forms of communication,
product, service, environment and system development (Buchanan, 2001), as well as to frame
opportunities and solve problems from individual to global scales. The following reflections on
the Design discipline interpret and portray certain ‘designerly ways’ (Cross, 2001) to help explain
foundational terminology, introduce key concepts and clarify what is meant by the term ‘design’
in the context of this chapter.
Designerly Thinking and Design Thinking - One universal characteristic of design is the way
professional designers think, referred to as ‘designerly thinking’. These ways of thinking can be
translated and exported for use by non-designers as an access point into the design field, referred
to as ‘design thinking’ (Nhu Laursen and Møller Haase, 2019). Design thinking does not
incorporate the methodological and theoretical aspects used by professional designers but it
conveys rather well the application of interconnected principles, practices, mindsets and
techniques, which can be conceptually modeled as three distinct levels (Figure 1).
Figure 1. A Conceptual Model of Design Thinking (Carlgren et al., 2016).
Level 1 of this conceptual model contains the core ‘Principles’ of design (e.g. reflective framing,
abductive reasoning, integrative thinking, holistic view), which are embodied by design ‘Mindsets’
(e.g. , empathic, experimental, explorative, optimistic) and enacted through design ‘Practices’ (e.g.
divergent and convergent thinking, visualisation, thinking by doing, collaborative working). The
combination of both Mindsets and Practices makes up level 2. Finally, level 3 contains
‘Techniques’, encompassing the methods and tools utilised by designers (e.g. ethnographic
research, journey mapping, storyboarding) which support practice and further develop mindsets.
Design Process and Design Brief - One of the most commonly used terms in the discipline is
‘design process’, which can be described as the actions carried out within two distinct stages of
‘framing’ and ‘solving'. The first stage of a design process focuses on framing to ‘design the right
thing’, and the second stage focuses on solving to ‘design the thing right’ (Nessler, 2016). During
the earliest stage of the design process, designerly investigations take place as sensemaking or
framing exercises (Dillon, 1982) to gather insights, better understand opportunities or problems
and define the scope of the design task, often through a written technical document called a ‘design
Design Contributions and Interventions - Outcomes of a design process could go beyond
physical end-products; they include four categories of designerly contributions (Wobbrock and
Kientz, 2016):
A. Interventional (e.g. products, services, systems)
B. Theoretical (e.g. models, frameworks, principles)
C. Methodological (e.g. methods, processes, techniques)
D. Empirical (e.g. ethnographic insights, analysis findings, data sets)
The category of interventional contributions can be further divided into the Four Orders of Design
(Buchanan, 2001) which consist of: graphics; products; services; and systems. Figure 2 outlines
the Four Orders and their relevant design disciplines.
Figure 2. The Four Orders of Design and Relevant Design Disciplines.
The Convergence of Design, Children’s Rights and Disability
There is huge potential to close the gap which exists between children with disabilities and their
rights, by instigating collaboration and dialogue between the foundational knowledge domains of
Childhood, Disability and Rights at the heart of the design process.
Figure 3. The relationship between Design and disabled children’s Rights.
These core subject areas are each surrounded by a variety of deep-rooted disciplines of study and
practice (Figure 3) containing a wealth of knowledge relevant to designing for the rights of children
with disabilities. For example, in the field of Child-centred Design, organisations concerned
specifically with design for children’s rights have been established (5Rights Foundation, 2018;
D4CR Association, 2018), whilst research hubs and higher education courses have been launched
in the field of AT design and innovation (PPAT, 2018; Global Disability Innovation Hub, 2018).
Despite this, little attention has been channeled into the specific pocket of knowledge at the
intersection of these core subject areas, concerning design for children’s rights and disability.
Disabled children's rights could manifest in relation to design on three key meta levels: design
contributions (what is designed), design processes (how it is designed), and design investigations
(why it is designed). In the context of design, disabled children’s rights are often perceived as
purely about methods and processes of participation and engagement (predominantly referring to
Art. 12 of CRC, the right of the child to be heard) which means designers tend to focus on questions
around participatory design processes and design for, with, and by children (Benton and Johnson,
2015; Can and İnalhan, 2017; Robbé, 2017). This risks other articles of the two treaties being
Although important and worthwhile, this focus on participatory methods has resulted in the current
state of design for children with disabilities focusing on what and how we are designing, without
asking crucial questions around why we are designing. Such limited designerly investigations have
contributed to the deep-rooted issues around viability, feasibility and desirability of designs for
disabled children (Heather et al., 2016; Holloway et al., 2018). To address these issues, the
potential role of design as an active and direct agent of disabled children’s rights is explored and
questioned on multiple levels through investigating the intersection of knowledge from relevant
fields. In terms of why to design, this chapter addresses the limited investigations into stakeholder
narratives and social imaginaries (Jasanoff, 2015) in the design process. In terms of how to design,
methods for capturing, understanding, and designing for the requirements and desires of a child
are discussed. In terms of what to design, the field of inclusive paediatric mobility design is
selected as a case study, to examine a range of existing contributions and shed light on the nature
of designerly ways in the field. The chapter also explores questions around who, where and when,
to highlight challenges and opportunities to optimise design as an agent of disabled children’s
Design as an Agent of Disabled Children’s Rights
The 5 designerly ways from the Reflection-for-Transition Framework (Figure 4) are used as a
reference point to structure exploration around how design could act as an agent acknowledging,
integrating and facilitating disabled children’s rights. These closely intertwined designerly ways
include: investigations, processes, contributions, collaborations and contexts (Shaw and Nickpour,
Figure 4. Reflection-for-Transition framework of Designerly Ways (Shaw & Nickpour, 2021).
Designerly Investigations; Asking Why?
There is always an intention, a cause, a motive, or a reason why we design. Whether designing out
of duty (i.e. deontology), virtue (e.g. as an active citizen), utilitarianism (i.e. for the greater good),
or freedom [from external forces], determining the scope of a design project is a critical ethical
decision (D'Anjou, 2010), in which moral choices are confronted and a degree of design ethics is
taken on, whether the designer is conscious of it or not. Designerly investigations are thus
considered critical for ensuring design justice (Costanza-Chock, 2020). They are required to look
at a subject from various points of view, taking into account a range of perspectives, narratives
(Grimaldi et al., 2013) and social imaginaries (Jasanoff, 2015) to identify, question, and make
sense of insights, before channeling them into a design brief with a clear set of expected outcomes
and deliverables.
When instigating a process of social design for children with disabilities, open-ended and complex
problems are often accompanied by a sense of urgency. The dogma and sense of authority
emanated by conventions such as the CRC and CRPD convey a seemingly indisputable narrative
that it is imperative to facilitate children's rights. As a result, designers often hastily accept this
dominant narrative without conducting their own designerly investigations or taking time to
consider the project scope on a deeper ethical level (Costanza-Chock, 2020). Failing to explore
alternative narratives in this way limits the framing of why a project is needed and typically leads
designers to focus on specifying what interventional solution should be designed, whilst sometimes
also overlooking how children’s rights can be embedded within designerly processes, or within
technical design documents such as User Requirement Specifications (URS) and Product Design
Specifications (PDS). To acknowledge, integrate and facilitate the rights of children with
disabilities more fully in this early stage of design, the CRC and CRPD should be utilised by
designers to inform and support their designerly investigations rather than to replace them.
Designerly Processes; Asking How?
In order to achieve a truly child-centred design process, the scoping and framing of a design project
requires the participation of the child. Incorporating children’s perspectives, requirements, and
rights, centrally in the design process can elevate the status of their interests and views,
psychologically and physically empower them, uncover unacknowledged, unstated and unmet
narratives, requirements and desires, and achieve more appropriate and satisfactory child-centred
outcomes (Benton and Johnson, 2015; Can and İnalhan, 2017; Robbé, 2017). Article 12 of the
CRC explicitly states that ‘the child who is capable of forming his or her own views has the right
to express those views freely in all matters affecting the child’, which includes their opinions,
experiences and ideas around the design of interventions intended for their use. Children thus have
the right to be recognised and involved as social actors and expert participants, and designers have
the duty and privilege to pay attention and represent children and their views through participation
in design and design research (Lomax, 2015).
Melton and Limber (1992) argue that the essence of Article 12 ‘goes beyond the right to be heard
on individual matters to the right to voice opinions on matters affecting children as a class’. Lundy
(2007) proposes four conceptual dimensions to the facilitation of Article 12 which design can
adopt including: ‘space’ to create opportunities for children to express their views; ‘voice’ in terms
of facilitating and capturing their views; ‘audience’ with regards to designers actively listening to
children’s voices; and ‘influence’ for designers to give children’s voices and views due weight.
Design is both well-positioned and well-equipped to accommodate these dimensions, through its
multitude of empathic and participatory approaches and practices such as human-centred design,
inclusive design, participatory design, co-design and co-creation, as well as its multiple creative
and immersive methods and techniques such as cultural probes, design fiction, experience
prototyping, storyboarding, role play, rapid prototyping, and creative workshops. Where a child
cannot express their views without support, designers should remain cautious about the views and
biases of other stakeholders becoming entangled and pushed forward as the child’s own. To better
facilitate children’s rights, designerly processes should transition from asking if or why children
should be included in the design process, to instead utilising guidelines, methodologies and
resources about how best to engage with children from the outset, inclusive of children with
alternative communication requirements (Ibrahim et al., 2021; Ellis, 2007; Hagen et al., 2012;
5Rights Foundation, 2018; D4CR Association, 2018), to ensure child-centred framing of the
design project before rushing to identify requirements and solutions.
Designerly Contributions; Asking What?
Designerly contributions could be considered the most obvious agent of children’s rights within
design, as the physical deliverables which enable children to independently achieve their rights.
Every choice made in design is a choice to include or exclude someone, affect their degree of
independence, privacy, participation or access, and to enable or disable them; design could thereby
be considered as the force responsible for causing disability (Shew, 2018). Designers thus have an
ethical duty to consider the accessibility, functionality, and desirability of their contributions based
on who or what they intend to include and enable. With regards to the accessibility of contributions,
one of the most significant barriers to children with disabilities accessing interventional designs is
affordability (Holloway et al., 2018). The CRPD promotes the design and development of
affordable AT (Art. 4) particularly in developing countries where cost presents a major access
barrier to AT, and thus facilitation of rights.
As the role of designers and the very definition of design evolves over time, so too should the types
of contribution being created, moving towards design being applied more evenly across products,
services, environments and systems based on where it can achieve the greatest impact and
facilitation of disabled children’s rights. Furthermore, the theoretical and methodological design
contributions could also act as powerful agents facilitating children's rights. This could also lead
to design playing a major role in: the development of innovative and disruptive business models;
a paradigm shift in the way AT is marketed and distributed; new policies, regulations,
specifications and standards to promote greater inclusion for children with disabilities (Hagan,
Designerly Collaborations; Asking Who?
Designerly collaborations embody the ways designers engage with others throughout the design
process, including who they work with and the nature of their engagement. Well-established
practices such as co-design and participatory design enable designers to facilitate
interdisciplinarity and foster co-creation by taking on the role as participant-facilitators (Aguirre
et al., 2017). Beyond involving children with lived experience in the design process, the design of
inclusive interventions for children with disabilities requires the interlacing of subject-specific
knowledge from a wide range of disciplines. The specialist knowledge and experience of experts
from disciplines with a strong child-centred focus, can help designers to focus on elevating
children’s perspectives, requirements, and rights whilst considering the risk of omitting particular
aspects of children’s participatory offerings. Interdisciplinarity provides a more holistic, rigorous
and exhaustive approach to child-centred design which ensures children’s voices are deeply
considered without disciplinary bias, and reduces risk of misinterpretation (Lomax, 2015).
Designerly Contexts; Asking Where and When?
Designerly contexts encompass the ways in which designers are influenced by factors connected
with, or relevant to, the time, place and system they are designing for. Such influences present in
a variety of forms, from deep-seated and imperceptibly evolving values, goals and interests at an
individual level, to abrupt changes commanding immediate action at a global level, all of which
contribute to the shaping of design outcomes. The contextual dimension of time ranges between
thinking about the present and short-term solutions to the future and long-term solutions, whilst
the contextual dimension of place ranges from the designer’s personal or local context all the way
up to an international or global context. Socially responsible design encourages designers to
consider the ethical implications of constraining designs to specific places, and consider the needs
of those beyond their own context (Tsekleves et al., 2021; De Vere and Melles, 2013). Techniques
such as ethnographic research and usability testing help designers ensure design outcomes are
suitable and feasible for the intended users and contexts, whilst open-source design advocates the
sharing of knowledge (Aitamurto et al., 2015).
With regards to the temporal context of design, it would be short-sighted to assume that
conventions formulated in 1990 (CRC) and 2007 (CRPD) will fulfil the requirements of children
for the rest of time; there is always a need for revision, reform and innovation. Since these rights
are just the baseline or ‘minimum viable product’ of what designers should be striving to facilitate,
there is significant potential to uncover the unmet needs of children today and speculate how a
better childhood could or should look for the children of tomorrow and forecast what their rights
might look like. Contemplating and discussing speculative futures or alternative presents can be
instigated by utilising approaches such as design fiction, future-gazing, reflective and critical
design (Jakobsone, 2017).
Design for Paediatric Mobility Rights; Under the Spotlight
Paediatric Mobility as a Fundamental Right
Mobility is a necessary and profound part of life which amongst children in particular enables
participation and access to a broad range of rights. Within the CRPD, Article 20 is titled ‘Personal
Mobility’ and explicitly highlights the right to access quality mobility aids, devices and assistive
technologies. During childhood, it is our ability to move about and independently explore our
environment that provides meaningful access to almost all major areas of life including: physical,
emotional, psychosocial, perceptual and cognitive development; play, recreational activities and
social interactions with peers; active participation in the community and cultural life; self-reliance,
self-expression and education (Guerette et al., 2013; Bray et al., 2020). Each of these areas are also
considered as rights, embodied by articles 6, 13, 15, 23, 24, 28, 29 and 31 in the CRC and by
articles 7, 10, 19, 20, 21, 24, 25, 26 and 30 in the CRPD. For children with mobility disabilities,
access to these opportunities is greatly reduced and the likelihood of developing passive,
dependent behaviours thus increases significantly. Lack of self-initiated mobility in early years
limits children’s ability to explore their environment which hinders the development of
fundamental skills such as navigation and spatial-cognition (Anderson et al., 2013). Furthermore,
around 90% of such brain development occurs during the first five years of life, making early
intervention and provision of paediatric mobility an urgent priority to avoid irreversible
developmental delays (Brown and Jernigan, 2012). Timely access to appropriate paediatric
mobility interventions which facilitate independence can thus be deemed instrumental in
facilitating the legal rights of children with mobility disabilities. The design of paediatric mobility
interventions plays a significant role in determining to what extent these rights are facilitated. For
this reason, the case study of paediatric mobility will be used in the remainder of this chapter to
further interrogate and provide tangible examples of the interrelations of children’s rights,
disability and design.
Inclusive Design Approach to Paediatric Mobility
The CRPD promotes the universal design approach as ‘the design of products, environments,
programmes and services to be usable by all people, to the greatest extent possible, without the
need for adaptation or specialised design’. Within the global context of designing for children’s
rights and disability, we believe design can go one step further, and instead we put forward
inclusive design as the best suited design approach, due to consideration of extreme users’
(Newell, 2003) such as children or people with disabilities, being the centre of focus throughout
the design process, as opposed to being a ‘bolt-on’ consideration. Building upon the human-
centred and universal design approaches, inclusive design advocates for equity through firstly
understanding the full diversity of people’s physical and psychosocial abilities across different
contexts, before focusing on a specific individual or use case, and then extending this to make
design outcomes accessible and usable by the broadest possible population. This approach
challenges the more traditional ‘deficit orientedapproaches used to design for people with
disabilities, which typically result in techno-ableist solutions that fail to meet the needs or desires
of their intended users (Shew, 2018).
Inclusive Paediatric Mobility (IPM) design is the application of an inclusive design approach to
create mobility interventions for children, such as wheelchairs, tricycles, standing frames, walking
aids, prosthetic (robotic) limbs, braces and exoskeletons. Throughout history, the landscape of IPM
design has responsively evolved to reflect advances in technology and changes in cultural
narratives and understandings around childhood and disability (Butler, 2009). It is becoming
increasingly important to approach the design process for such products from a child-centred point
of view rather than simply downsizing adult mobility products (Heather et al., 2016). There are 3
conventional approaches towards the application of inclusive design which include the ‘special-
purpose’ approach, the ‘modular’ approach, and the ‘user-aware’ approach (Clarkson & Coleman,
2015). In the context of IPM, the design of powered wheelchairs typically takes on the special-
purpose approach which caters specifically for the needs of disabled individuals without extending
to a ‘mainstream’ market. Adapted ride-on toy vehicles utilise the modular approach which
customises mainstream products to cater for the needs of disabled individuals. Supportive go-karts
and other mainstream products which also consider the needs of disabled individuals during the
design process embrace the user-aware approach.
Inclusive Paediatric Mobility Design from the perspective of Children’s Rights
The following discussion reflects on the IPM design landscape using real-world examples to
provide a snapshot of how design currently acts as an agent of children’s rights and disability in
the field, shedding light on the nature of designerly ways and exploring challenges and
opportunities for the future.
Manifestation of Children’s Rights Narratives in Design Briefs (Investigations)
Our interpretations of reality and the way we perceive problems are depicted through the narratives
we embrace, which in the case of IPM design, often centre around equality and children’s rights.
For example, the narrative that ‘children with mobility impairments should have equal
development and participation opportunities to their peers’ was what motivated a father in the UK
to design an elevating power chair known as ‘Turbo’ for his disabled daughter (Everard, 1983).
Similarly, the narrative that ‘easy access to low-cost and customisable IPM interventions should
be a right’ led to the creation of a project called ‘GoBabyGo’ in the US, which uses a modular
design approach to adapt ride-on toy vehicles for children with mobility impairments (Huang and
Galloway, 2012). These narratives originate from contexts where the states parties officially
recognise mobility as a right (Art. 20, CRPD), which highlights the lack of state initiative, funding
and support to genuinely assure and facilitate this right. Engagement with alternative narratives
and approaches to framing IPM have remained relatively underexplored over the past fifty years,
resulting in a lack of substantial innovation or critical design in the field (Shaw and Nickpour,
2021). Extending designerly investigations to consider contemporary narratives around design
justice, techno-ableism, empowerment and rights (Costanza-Chock, 2020; Fritsch et al., 2019;
Shew, 2018) could help critique, alter, and reinvent the material-discursive landscape of IPM
design, which highlights the need to engage with children and disciplines beyond Design at the
front-end of the design process.
Child-centred Problem Framing and Solving (Processes)
The multidisciplinary nature of the IPM field requires input from various stakeholders in the design
process, which has often resulted in children’s voices being diluted, repressed or excluded (Benton
and Johnson, 2015; Heather et al., 2016). This is particularly visible when children’s participation
is facilitated alongside other stakeholders such as their parents, healthcare providers, or even
designers, as power dynamics can influence the nature or weighting of their input (Gallagher,
2008). Meaningful participation of a child can be facilitated at various stages throughout the design
process to understand and capture their requirements and desires, using methods such as
participatory design, co-creation, design fiction, experience prototyping, storyboarding, role play,
and creative workshop.
A case study which stands out for its commitment to child-centred design is that of an upright
powered mobility aid which involved the participation of a child throughout its design,
development and adaptation, over the course of nine years (Flodin, 2007). In this case, the child
uniquely framed the design narrative around their self-image, independence and physical
development, expressing a strong attraction to autonomous upright mobility early on in the design
process. This in itself made a stark contrast to the typical seated posture wheelchairs which the
child would have otherwise been prescribed. Another example of child-centred design comes from
an exploratory project by Desmet and Dijkhuis (2003) to develop a wheelchair that has a more
positive emotional impact for children. Through various studies involving both children who use
a wheelchair and their parents, it was highlighted that the emotional responses, functional priorities
and aesthetic desires of the children were considerably different to those of their parents.
Design as a facilitator of Inclusion or Exclusion (Contributions)
A recent illustrative mapping review of the IPM design field highlighted the disparity between
designerly contribution types, as illustrated in Figure 5.
Figure 5. Imbalance of designerly contributions to the field of IPM design (Shaw & Nickpour,
The landscape of interventional contributions is shaped largely by an assortment of products, along
with a scattering of services and product-service hybrids. Examples of such hybrid interventions
include IPM product loan schemes intended to overcome financial accessibility barriers, including
the Bugzi (QEF, 2018) and the Wizzybug (Designability, 2020) wheelchair loan schemes,
however, it is important to acknowledge that such charitable initiatives are only necessary due to
injustices resulting from state parties failing to uphold disabled children’s rights
(Sépulchre, 2020). In parallel, research around the relationship between inclusive mobility and
legal rights, Ranchordás (2020) explains why access to affordable inclusive mobility that meets
the user’s needs should not be regarded as a separate socio-economic right, but as ‘a concretisation
of the right to equal treatment’. The idea of mobility as a service (MaaS) rather than as a product
owned by an individual is an interesting example of how diversifying designerly contribution types
could overcome exclusion and further support rights and equity.
It is worth noting that a large pool of dormant interventional design contributions exists in the IPM
landscape in the form of design concepts or discontinued products. Learning from mainstream
design, IPM interventions could remain relevant for longer by widening the diversity of users and
geographic targets through designing flexible products which can adapt to people’s changing needs
and changes in context. Adaptability and flexibility to cater for a child’s growth and developmental
needs are major factors to consider in IPM design, which often get overlooked and result in
exclusion. An example of IPM design which directly addressed users’ ever-changing requirements
is the ‘Evolvable walking aid’ (Nickpour and O’Sullivan, 2016) which was designed to have
‘Respect for the evolving capacities of children with disabilities’ (Art. 3 of CRPD). Designing
interventions to allow flexibility for changes in children’s disabilities could offer them greater
comfort and control over their mobility, whilst providing more viable, cost-effective and
sustainable solutions.
Listening to Children through Interdisciplinary Participation (Collaborations)
Stakeholders and experts from different backgrounds and disciplines typically hold contradicting
priorities, points of views and vested interests when it comes to IPM design, which leads to the
need for trade-offs. Specific child-centred design methodologies can be adopted to strike a healthy
tension between stakeholders and achieve trade-offs which work for everyone. Facilitating
interdisciplinary collaboration which centres around the child’s requirements, desires and
aspirations is one way to achieve this. An example of this is the use of a theoretical framework
which was developed to facilitate rigorous interdisciplinary analysis and interpretation of
children’s design inputs from a ‘Dream wheelchair competition’ (O'Sullivan et al., 2021) where
children drew and/or wrote about their dream wheelchair design (example in Figure 6). The
framework facilitated interdisciplinary discussion and collaboration to elicit children’s voice and
uncover their unspoken narratives, requirements and desired mobility futurescapes. Trending
topics which emerged from the 130 analysed dream wheelchair designs ranged from incremental
innovations such as safety features, weather protection and storage compartments, to more radical
innovations such as futuristic technologies, the capacity to fly and magical powers. Many children
expressed an altruistic desire for shared participation in their mobility experience through
designing considerate accessories or features to engage with or empower their friends, parents or
carers in ways that existing wheelchairs do not. Examples included a built-in tea making facility
for mum, a passenger seat to travel together, a platform for others to keep up, and a machine to
give toys to all the other children. These examples dismantle the rhetoric of dependency and
establish children’s desire for their future mobility interventions to facilitate child-initiated
socialisation. The child-centred insights elicited through such studies could be used as qualitative
and quantitative data to guide and inform IPM designer’s direction and decisions (Shaw et al.,
2021). Although such collaboration and involvement of children could be considered as time-
consuming and costly, the resulting child-centred design solutions will ultimately be more
appropriate and serve their purpose better which from a rights perspective is an economic and
moral investment worth arguing for.
Figure 6. Example of a ‘Dream Wheelchair’ designed by a young wheelchair user.
Exploring the Bigger Picture of Children’s Rights and IPM Design (Contexts)
When considering the designerly context of IPM design, it is important to acknowledge that over
80% of children in need of a mobility intervention live in low-resource settings which lack funding
to cover such costs and lack access to appropriate and affordable devices (Holloway et al., 2018).
Factors such as unaffordability, distribution limitations, and unsuitability of design for user or
context, remain the leading barriers to accessing suitable IPM interventions. The CRPD demands
State Parties to ‘undertake and promote the development of affordable mobility aids’ (Art. 4), and
to share knowledge between and among states to minimise inequality (Art. 32), both of which rely
on organisations or individual designers to fulfil. Consideration of the local culture, target user
income, distribution models and long-term suitability for a given context are critical considerations
when designing, implementing and sustaining affordable interventions, particularly in low-
resource or developing regions of the world (Tsekleves et al., 2021). The all-terrain ‘SafariSeat’
wheelchair embraced three core design principles of ‘affordability’, ‘localised design’ and
‘usability in context’, to create a mobility aid which overcame many of the basic access barriers
(O’Sullivan, 2021). The designers further championed accessibility and distributive justice by
offering an open-source manual containing blueprints for the design, to share designerly
knowledge across borders.
Optimising Design as an Agent of Children’s Rights
Transitioning Designerly Ways
The following suggestions in Figure 7 summarise visions for transition for each of the five
designerly ways to better acknowledge and embed children's rights in order to optimise Design as
an agent of children’s rights. Although based on insights from reviewing the field of IPM design,
the high-level nature of these suggestions makes them pertinent and applicable to designerly ways
in various neighbouring fields of design for children’s rights and disability.
Figure 7. Transitioning designerly ways to optimise design as an agent of children’s rights.
Prioritising and Balancing Designerly Ways
Having broadly reflected on how designerly ways can facilitate children’s rights and suggested
more specific opportunities to acknowledge and embed them, a macro perspective on designerly
ways is now applied to identify precedence and priority for transitioning them. The radar chart in
Figure 8 illustrates the distribution of IPM designers’ attentiveness towards each of the designerly
ways in the context of designing for the rights of children with disabilities.
Figure 8. IPM designers’ collective focus on each of the five designerly ways in the context of
IPM design as an agent of children’s rights.
The dark coloured pentagon at the centre of the chart represents the existing focus designers give
relative to each of the designerly ways, according to a review of literature in the field; it highlights
the imbalanced levels of focus currently given to questions of why, how, what, who, where and
when. The light coloured pentagon represents the suggested priority future focus to be given to
each designerly ways, based on the goal of optimising design as an agent of children's rights, from
the perspective of human-centred and inclusive design experts. Of the 5 designerly ways,
‘investigations’ bear the most significant influence over the entire design direction, approach, and
outcome, yet currently receive the least focus; they have hence been prioritised as the area in need
of most focus going forward. By starting the design process with questions of why, the project
scope can be explored more rigorously on an ethical level to enable mindful consideration towards
facilitating child-centred design and optimising the rights of children with disabilities. The
interrelated nature of designerly ways means aspects of designerly processes, contributions,
collaborations and contexts will naturally be entwined and improved with the heightened focus on
designerly investigations.
This chapter offers the foundational knowledge and tools required to support those advocating the
rights of children with disabilities, to enter into discussion with the field of design, recognising its
role as an active agent of children’s rights. Firstly, five interrelated designerly ways are critically
reflected upon and discussed to explore how design can act as an agent acknowledging, integrating
and facilitating the rights of children with disabilities. These include Designerly: Investigations,
Processes, Contributions, Collaborations, and Contexts. Secondly, Inclusive Paediatric Mobility
(IPM) design field is focused upon and investigated in order to provide context-specific insights,
challenges and opportunities surrounding designerly ways in practice. Finally, two key directions
are proposed in order to help optimise design as an agent of children’s rights, i.e. transitioning the
designerly ways and prioritising and balancing the designerly ways.
Key insights for transitioning to alternative designerly ways are structured using the Reflection-
for-Transition Framework of Designerly Ways (Figure 6). The current imbalanced focus on each
designerly way and priority areas of focus in the future are outlined using a designerly way radar
(Figure 7). Future design research around this topic should prioritise establishment of a more
rigorous designerly investigations framing process which pays specific attention to capturing
stakeholders’ narratives and optimising the child-centred design approach. Going forward,
incorporating reflective practice, there needs to be a framework for designers to objectively and
robustly identify which of the designerly ways on the radar needs more focus from designers and
why. Following this, there is a need to explore how any newly proposed designerly ways should
be applied in the practice of design for children’s rights. It is suggested that a commitment for
equity and social responsibility should be instilled in designers of the future by incorporating topics
such as social design, design justice and active citizenship into design education, and integrating
designerly ways with engineering sciences.
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Full-text available
Background: One-fifth of all disabled children have mobility limitations. Early provision of powered mobility for very young children (aged < 5 years) is hypothesised to trigger positive developmental changes. However, the optimum age at which to introduce powered mobility is unknown. Objective: The aim of this project was to synthesise existing evidence regarding the effectiveness and cost-effectiveness of powered mobility for very young children, compared with the more common practice of powered mobility provision from the age of 5 years. Review methods: The study was planned as a mixed-methods evidence synthesis and economic modelling study. First, evidence relating to the effectiveness, cost-effectiveness, acceptability, feasibility and anticipated outcomes of paediatric powered mobility interventions was reviewed. A convergent mixed-methods evidence synthesis was undertaken using framework synthesis, and a separate qualitative evidence synthesis was undertaken using thematic synthesis. The two syntheses were subsequently compared and contrasted to develop a logic model for evaluating the outcomes of powered mobility interventions for children. Because there were insufficient published data, it was not possible to develop a robust economic model. Instead, a budget impact analysis was conducted to estimate the cost of increased powered mobility provision for very young children, using cost data from publicly available sources. Data sources: A range of bibliographic databases [Cumulative Index to Nursing and Allied Health Literature (CINHAL), MEDLINE, EMBASE™ (Elsevier, Amsterdam, the Netherlands), Physiotherapy Evidence Database (PEDro), Occupational Therapy Systematic Evaluation of Evidence (OTseeker), Applied Social Sciences Index and Abstracts (ASSIA), PsycINFO, Science Citation Index (SCI; Clarivate Analytics, Philadelphia, PA, USA), Social Sciences Citation Index™ (SSCI; Clarivate Analytics), Conference Proceedings Citation Index – Science (CPCI-S; Clarivate Analytics), Conference Proceedings Citation Index – Social Science & Humanities (CPCI-SSH; Clarivate Analytics), Cochrane Central Register of Controlled Trials (CENTRAL), Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effects (DARE), NHS Economic Evaluation Database (NHS EED), Health Technology Assessment (HTA) Database and OpenGrey] was systematically searched and the included studies were quality appraised. Searches were carried out in June 2018 and updated in October 2019. The date ranges searched covered from 1946 to September 2019 Results: In total, 89 studies were included in the review. Only two randomised controlled trials were identified. The overall quality of the evidence was low. No conclusive evidence was found about the effectiveness or cost-effectiveness of powered mobility in children aged either < 5 or ≥ 5 years. However, strong support was found that powered mobility interventions have a positive impact on children’s movement and mobility, and moderate support was found for the impact on children’s participation, play and social interactions and on the safety outcome of accidents and pain. ‘Fit’ between the child, the equipment and the environment was found to be important, as were the outcomes related to a child’s independence, freedom and self-expression. The evidence supported two distinct conceptualisations of the primary powered mobility outcome, movement and mobility: the former is ‘movement for movement’s sake’ and the latter destination-focused mobility. Powered mobility should be focused on ‘movement for movement’s sake’ in the first instance. From the budget impact analysis, it was estimated that, annually, the NHS spends £1.89M on the provision of powered mobility for very young children, which is < 2% of total wheelchair service expenditure. Limitations: The original research question could not be answered because there was a lack of appropriately powered published research. Conclusions: Early powered mobility is likely to have multiple benefits for very young children, despite the lack of robust evidence to demonstrate this. Age is not the key factor; instead, the focus should be on providing developmentally appropriate interventions and focusing on ‘movement for movement’s sake’. Future work: Future research should focus on developing, implementing, evaluating and comparing different approaches to early powered mobility. Study registration: This study is registered as PROSPERO CRD42018096449. Funding: This project was funded by the National Institute for Health Research (NIHR) Health Technology programme and will be published in full in Health Technology Assessment; Vol. 24, No. 50.
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Inclusive paediatric mobility (IPM) design is a growing field in need of critical and foundational designerly transitions in order to better deal with a wicked problem. This article adopts an illustrative mapping review method to interrogate the past 50 years of IPM design, aiming to identify alternative designerly ways that could help transition the field towards a more desirable long-term future. IPM Design contributions between 1970 and 2020 are mapped chronologically across Theoretical, Methodological, Empirical, and Interventional categories. A Reflection-for-Transition framework of Designerly Ways is developed to identify existing and alternative designerly ways, through categorising key insights from the mapping review. The framework consists of five interrelated dimensions, including Designerly: Investigations, Processes, Contributions, Collaborations, and Contexts. Proposed alternative designerly ways include: exploring high-level narratives and social imaginaries; shifting focus towards problem-framing, child-centred design and transdisciplinarity; improved documentation and sharing to build a body of knowledge; and exploring extended design contexts.
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Developing appropriate assistive technology to be manufactured and maintained within the local context of a low-resource setting, requires alternative design principles and designerly ways to those used when designing in, or for, more resourced regions of the world. This case study offers an empirical account of the design of SafariSeat, an all-terrain wheelchair which has been designed, tested, manufactured and turned into a sustainable enterprise in East Africa. The wheelchair was developed with intentions to reduce inequality and help alleviate poverty in low-resource communities by improving users' health, wellbeing and participation in society, whilst creating and facilitating local jobs to support communities. Having developed SafariSeat with a human-centred design approach, a local mindset, and prioritisation of usability and affordability, this case study is used to reflect on the applied design principles, practices and processes whilst providing contextual insights for other designers seeking to work in a similar way. The study discusses challenges encountered whilst designing in a low-resource setting, and highlights how local collaboration and partnerships can help lead to the creation of a more sustainable solution.
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An exploration of how design might be led by marginalized communities, dismantle structural inequality, and advance collective liberation and ecological survival. What is the relationship between design, power, and social justice? “Design justice” is an approach to design that is led by marginalized communities and that aims expilcitly to challenge, rather than reproduce, structural inequalities. It has emerged from a growing community of designers in various fields who work closely with social movements and community-based organizations around the world. This book explores the theory and practice of design justice, demonstrates how universalist design principles and practices erase certain groups of people—specifically, those who are intersectionally disadvantaged or multiply burdened under the matrix of domination (white supremacist heteropatriarchy, ableism, capitalism, and settler colonialism)—and invites readers to “build a better world, a world where many worlds fit; linked worlds of collective liberation and ecological sustainability.” Along the way, the book documents a multitude of real-world community-led design practices, each grounded in a particular social movement. Design Justice goes beyond recent calls for design for good, user-centered design, and employment diversity in the technology and design professions; it connects design to larger struggles for collective liberation and ecological survival. The open access edition of this book was made possible by generous funding from Knowledge Unlatched and the MIT Press Frank Urbanowski Memorial Fund.
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This paper contributes by clearly identifying the shortcoming of design thinking as well as pinpointing where to begin in terms of achieving a more solid conceptualization of the concept. To identify its potential shortcomings, this study examines the theoretical structure of design thinking and compares it to the theoretical structure of designerly thinking. This comparison suggests that the current conceptualization of design thinking lacks methodological approaches, that is, guidelines concerning how best to approach a given problem and how to competently select, configure, apply and evaluate the tools and techniques needed to tackle that problem. In its present form, design thinking facilitates the general, non-situated application of tools and techniques, which is neither linked to nor anchored in a design paradigm.
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Designers increasingly find themselves facilitating large-scale design events. Yet few have explored design facilitation as an emerging practice. This article examines the design facilitation practices used in two Norwegian case studies of multi-stakeholder events. We focus on the contextually designed tools designers create to help them facilitate. We then explore some critical dimensions of design facilitation. When used as visual overlays, facilitators’ explicit knowledge of these dimensions can improve their capacity to analyze, evaluate, and plan how to design and use contextual tools during design events. By plotting how designers use facilitation tools sequentially during events, we render the flow of design facilitation practice visible and accessible. We suggest that an explicit awareness of these dimensions and flows can enable designers to build more inclusive and inspiring tools, orchestrate the flow of long-term participatory processes more deliberately, and better equip participants to work with complex systemic change.
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Child participation is one of the core principles of the United Nations Convention on the Rights of the Child (UNCRC), which asserts that children and young people have the right to freely express their views. Despite the increasing numbers of children’s spaces, there are few studies that describe the involvement of the children in these environments’ design and planning. Many of the children’s environment are modelled on adult’s values and needs rather than the needs of child users (Hart, 1992; Rayner et. al, 2012). This is the result of design process itself where there is a focus on designing for children, rather than designing with children (Wake, 2007). It is crucial that understanding children’s knowledge, values, experience and use of place would help us improve planning and design of those children’s spaces. Therefore this study discusses the participation of children in the design of educational environments.
This special section of Catalyst maps the central nodes of the emerging field of crip technoscience, which we situate at the intersection of feminist technoscience studies and critical disability studies. Crip technoscience marks areas of overlap between these fields as well as productive disciplinary and political tensions. Our section brings together critical perspectives on disability and science and technology in order to grapple with historical and contemporary debates related to digital and emerging technologies, treatments, risk, and practices of access, design, health, and enhancement.