IDC 2012 WORKSHOP: Special Needs 12th-15th June, Bremen, Germany

Challenges, Opportunities and Future Perspectives in

Including Children with Disabilities in the Design of
Interactive Technology

Christopher Frauenberger, Judith Good Alyssa Alcorn

Human Centred Technologies Group School of Informatics
University of Sussex University of Edinburgh
Brighton, BN1 9QJ, UK Edinburgh, EH8 9AB, UK
[Link]@[Link] aalcorn@[Link]
[Link]@[Link]

ABSTRACT move towards human-centred and situated interaction de-

In this paper we discuss participatory approaches to de- sign [13]. PD is commonly dened as a collection of theo-
signing interactive technologies for children with disabilities. ries, practices and methods that facilitate end-users or other
While participatory design (PD) has been increasingly in- stakeholders participation in the design process of techno-
uential in the eld of Human-Computer Interaction as a logical artefacts or services [20].
whole, applying its methods and theories to children with
disabilities raises challenges specic to this target group and Adopting a participatory approach is commonly considered
poses more fundamental questions about the limits of PD. to have three main benets: 1) better understanding of re-
We will rst build the underlying argument of why we be- quirements, 2) building of realistic expectations in target
lieve PD is particularly important when designing for chil- groups and 3) empowerment of marginalised groups [6]. In
dren with disabilities, before discussing the challenges and the context of designing technology for children with dis-
opportunities that come with implementing PD in this con- abilities, all three benets take on increased signicance.
text. We ground this discussion in our own experiences with Firstly, designing technology for groups of people with pro-
developing a learning environment for children with autism les other than ones own is always challenging. The life
spectrum conditions (ASC). We then consider future per- worlds of children with disabilities, however, are particularly
spectives and develop research questions by reecting on our far removed from the experiences of typical designers or re-
experiences. searchers, which makes it particularly challenging to create
technology from a position of empathy and deep understand-
ing of their needs and requirements. Secondly, building up
Categories and Subject Descriptors realistic expectations of what technologies can and cannot do
H.5.2 [Information Interfaces and Presentation]: User
has a positive eect on its uptake and use. And nally and
InterfacesUser-centered design
most importantly, giving children with disabilities a stake
in the design of technology gives them a sense of ownership
General Terms and empowerment. In skewed power relationships such as
Design, Disabilties those between adults and children or people with disabilities
and their care-givers, being in control and shaping ones own
environment can be extremely satisfying and liberating and
Keywords hence a major contribution to the individuals wellbeing.
design research; participatory design; children; disabilities
Such inclusion of children with disabilities in the design
1. INTRODUCTION process of interactive technologies, however, does not come
Participatory Design (PD) originated in the Scandinavian without its risks and challenges. For the remainder of this
labour movement, which advocated the involvement of peo- paper we will discuss some of these, grounding the discussion
ple who are aected by technological change in its design in our experience with our work in ECHOES. ECHOES1
[6]. It has since gained a signicant inuence in mainstream is a technologically enhanced learning environment (TEL)
Human-Computer Interaction, as it complements the elds for typically developing children and children with autism
spectrum conditions (ASC), designed to scaold the devel-
opment of their social skills [23]. This means that while the
following section on related work focuses on autism, and the
Permission to make digital or hard copies of all or part of this work for challenges and opportunities we identied are similarly writ-
personal or classroom use is granted without fee provided that copies are ten from the perspective of our work in autism, we believe
not made or distributed for prot or commercial advantage and that copies that there is an opportunity to develop generic themes that
bear this notice and the full citation on the rst page. To copy otherwise, or
republish, to post on servers or to redistribute to lists, requires prior specic
are valid across disabilities, and will help to shape future
permission and/or a fee. research directions in this eld.
IDC 2012, June 1215, 2012, Bremen, Germany. 1
Copyright 2012 ACM 978-1-4503-1007-9...$10.00. [Link]

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 IDC 2012 WORKSHOP: Special Needs 12th-15th June, Bremen, Germany

2. RELATED WORK duct design activities which are fruitful and in which children
The following is not intended to be an exhaustive review of enjoy participating. In this particular context, the relation-
participatory work, but aims to highlight the dierent styles ships extend to parents, teachers and other care-givers, and
of participation found in design work with children with dis- are often a complex and sensitive web of connections. We
abilities. To this end we adapt the Ladder of Citizen Par- found that building these relationships requires time and
ticipation by Arnstein, which ranges from non-participation empathy. It is particularly important to understand that
over degrees of tokenism to degrees of citizen power [1] and while we, as designers and researchers, want to elicit infor-
is similar to Druins roles of children in the design process mation for our work, the children need to equally benet
[5]. from the process. This extends to the design as a process,
and the need to ensure that sessions are enjoyable for chil-
Non-participatory approaches are the in the majority when dren and that they feel valued. It also includes the design as
technology is designed for children with disabilities. System a product, and ensuring that children have tangible outputs
designs are typically informed by theories, best practices or from their participation in the design sessions, such as copies
prior experiences that revolve around the features of the dis- of their own creations, or small tokens of gratitude such as
ability. An example would be The Transporters, a system certicates, or videos showing some of the highlights of the
that uses multi-media content to improve emotion recogni- sessions that they can share with their parents or carers.
tion in children with autism [11]. Its design has been based
on autism theory and prior experiences with a similar pro- 3.2 Communication
totype, but no children with autism were directly involved
All design activities involve some form of communication
in the process.
between facilitators and children. As many adults with-
out disabilities struggle to express their ideas in such sit-
We call the second category participation via proxy. This is
uations, this suggests that facilitating communication for
when the needs of children with disabilities are represented
children with disabilities may be correspondingly more dif-
by people with intimate knowledge of the children, such as
cult and also more vital for their design participation to
their parents or teachers, or by educational experts. A typ-
be successful. Participating children with dierent disabili-
ical example is the design of vSked, a visual support for
ties will each pose their own set of challenges and will require
children with autism [15]. The vSked authors make a point
communicative aids tailored for their particular abilities and
about the usefulness of participation via proxy by stating
needs. Two examples of communication facilitation in the
that The burden of involvement was deemed too high for
area of autism work include our own research on an anno-
these children by the researchers, teachers, and IRB to in-
tation tool for design critique [7] and the work by van Rijn
clude them directly.
et al, who advocate the use of toys in play sessions to foster
empathy and facilitate communication through interaction
Finally, full participation is the most demanding style, both
[26].
for researchers and children. We dene this as any form of
involvement that allows children with disabilities to have di-
rect impact on the outcome. Examples include our own work 3.3 Creativity
in ECHOES in which we conducted a range of sensory work- Participatory design provides a tremendous opportunity to
shops, digital prototype activities and a design critique [9, 7] tap into childrens creative potential. In order to harness
or the work in the COSPATIAL project [19] and work on this potential, methods have been developed to put chil-
developing multi-touch applications for children with autism dren into situations where their natural, playful attitude to-
[16]. wards their surrounding environment is channelled into pro-
ducing creative triggers for design. One example includes
As most of this work is very specic to a certain context, Fictional Inquiry which uses imaginative play around a nar-
fewer design frameworks have been developed. Guha et al, rative [3]. Working with children with disabilities requires
have developed an inclusive model of Druins Co-operative careful balancing of opportunities for creativity with sup-
Inquiry [12, 4]. IDEAS (Interface Design Experience for port and structure. In ECHOES, for example, we have seen
the Autistic Spectrum) is a participatory design process children with autism struggle with open ended questions or
that particularly addresses some of the issues children with creative tasks that provided too little structure.
autism experience during design activities [2] and Keay-
Bright proposed a Research - Inspire - Listen - Evaluate 3.4 Translation
cycle for her work on ReacTickles [17]. Children with disabilities, just as other groups of stakehold-
ers in participatory processes, cannot directly take on the
3. CHALLENGES & OPPORTUNITIES role of designers and should not be expected to do so. This
The implementation of a participatory approach in ECHOES means that much of the input generated by children will
revealed a number of challenges that we have reected upon require interpretation and translation to become viable de-
from an autism perspective [9]. However, we believe these sign. This interpretation and translation process may be
issues could act as the starting point for the development of particularly challenging because input from children with
generic themes that are valid across dierent disabilities. disabilities can often appear fuzzy and seemingly irrational
to adult designers. We approached this task by building
3.1 Relationships on Keay-Brights notion of mindful interpretation and con-
Strong and lasting relationships with participants are the ducted a design workshop in which we have used designerly
foundation that participatory work requires to ourish. Mu- methods to develop outcomes while staying true to the input
tual trust between all stakeholders is vital in order to con- from our children [10]. In the course of this process, we also

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used existential phenomenology as an analytical framework that are meaningful in their lives. Manko et al, who have
to interpret input from children with the aim of separating used the eld of Disability Studies for a critical inquiry into
literal expressions from underlying experiences [8]. the eld of Assistive Technology (AT) attribute this to the
prevalence of the medical model of disability which denes
3.5 Evaluation & Epistemology disability through its medical features [18]. Other models,
such as the socio-cultural or post-modern model of disability,
Arriving at implementable designs based on childrens input
challenge this view and advocate a shift towards lived experi-
is a wicked problem, aording many dierent and equally
ences, personal wellbeing and disability as a social construct,
desirable solutions [24], and also making evaluation of the
not to be confused with the impairment [21]. Consequently,
process and outcomes particularly challenging. Design Re-
this leads to a stance that challenges the notion of normality
search could provide a framework that allows a structured
and the goal of enabling the disabled [22].
approach [27], as well as Action Research [14]. Both perspec-
tives hold promise in allowing researchers to systematically
When applying this perspective to the process of designing
generate knowledge from messy, qualitative research such
technologies for children with disabilities, we arrive at a po-
as this, but its acceptance in relation to designing technology
sition that calls for a shift in focus towards a more holistic,
is still low in the mainstream scientic community.
situated type of design. Instead of primarily concerning it-
self with the functional decits of a disability, a holistic and
4. FUTURE PERSPECTIVES situated design would emphasise positive experiences and
The above challenges already point to many research ques- the individual potential of children. For participatory de-
tions that clearly require attention in the future. However, sign in this context, this means that we need novel methods
upon deeper reection, we believe that two further concerns which allows us to innovate technology that we, as abled
emerge that derive less obviously from the practical work. adult designers, could not imagine because they can only be
imagined from within the life-worlds of children with disabil-
4.1 Digital Inclusion in Education ities. In essence, this implies that children with disabilities
With technologies playing an ever increasing role in our daily should be considered children rst. Their life-worlds give rise
lives, digital inclusion has become linked to social inclusion. to an application space for technology that is yet unknown to
For children with disabilities, educational settings are where us, and the key to exploring this space is developing methods
most of this digital inclusion or exclusion happens, which is that allow children to show us its possibilities.
demonstrated by considering the proportion of related re-
search that is conducted against an educational backdrop. 5. CONCLUSION
Schools and care-giving facilities therefore provide a prime In this paper we have discussed challenges, opportunities
access point to facilitate participation of children with dis- and future perspectives of participatory approaches for de-
abilities in co-designing technology. signing interactive technologies for children with disabilities.
Our motivation to participate in this workshop is grounded
The research brief for the Digital Inclusion theme of the in the belief that this paper will spark discussion amongst
Technologically Enhanced Learning (TEL) programme2 in researchers and designers and could be a starting point for
the UK provides an in-depth discussion of the role of tech- developing a research agenda that allows us to better under-
nology for children with special needs in educational settings stand how to facilitate meaningful participation of children
[25]. On the basis of this review it oers a number of avenues with disabilities in the design process and how to capitalise
for future research in digital inclusion which are prime can- on the benets while mitigating the risks.
didates for being approached through participatory design
research. For example, the brief calls for strengthening the Acknowledgements
conceptualisation of digital inclusion or expanding ways of
The ECHOES project is funded by the ESRC/EPSRC, TRLP
generating knowledge about technology in inclusive educa-
TEL programme grant number: RES-139-25-0395.
tion. It also calls for more qualitative research to bridge the
gap between objective learning successes to overall experi-
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