ISSN 2753-5878

11th Inclusive Design Conference

Helen Hamlyn Centre for Design

Conference Proceedings (Online)

Royal College of Art, London, UK
22-23 September 2022
INCLUDE. Unheard Voices is a global conference that focuses on inclusive design
and its people-centred, creative approaches. It is hosted by the Helen Hamlyn
Centre for Design at the Royal College of Art.

The Helen Hamlyn Centre for Design (HHCD) is a globally recognised centre of
excellence with a 30-year history of applying inclusive design and design thinking to
improve people’s lives. The term ‘inclusive design’ was framed by HHCD’s
founding co-director Roger Coleman in 1994, as a people-centred, comprehensive
and integrated design approach to ensure that people with diverse abilities and
needs are included in mainstream design consideration for products, services,
technologies, and environments. The HHCD is the largest and longest-running
design research centre of the Royal College of Art (RCA). The RCA was
established in 1837 and in 1967 was granted Royal Charter and University status.
It is a wholly postgraduate university institution of art and design, offering MA,
MPhil and PhD degrees, and to this day, remains the world’s leading university for
art and design education, having received the #1 QS Ranking for the eighth
consecutive year since 2015.

This conference proceedings were produced on 22 September 2022.

Conference Proceedings (Online): ISSN 2753-5878
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INCLUDE Academic Programme Committee
Dr Melanie Flory, Research Director
Dr Ninela Ivanova, Innovation Fellow
Dr Chris McGinley, Senior Research Fellow

Peer Review Panel

Royal College of Art

Dr Chris McGinley, Senior Research Fellow, Helen Hamlyn Centre for Design
Dan Phillips, Innovation Fellow, Intelligent Mobility Design Centre
Gail Ramster, Senior Research Associate, Helen Hamlyn Centre for Design
Professor Gareth Loudon, Head of Programmes (Global Innovation Design and
Innovation Design Engineering)
Dr Gerard Briscoe, Research Fellow, Design Age Institute
Professor Jeremy Myerson, Professor Emeritus and Helen Hamlyn Chair of
Design
Dr Jiayu Wu, Reader, Intelligent Mobility Design Centre
Professor Jo-Anne Bichard, Professor of Accessible Design, Helen Hamlyn
Centre for Design
Dr Katie Gaudion, Senior Research Associate, Helen Hamlyn Centre for Design
Dr Melanie Flory, Research Director, Helen Hamlyn Centre for Design
Melanie Smith, Institute Manager, Design Age Institute
Dr Ninela Ivanova, Innovation Fellow, Helen Hamlyn Centre for Design
Professor Stephen Boyd Davis, Professor of Design Research
Sidse Carroll, PhD, Research Fellow, Design Age Institute
Tom Stables, Industry Project Researcher, Helen Hamlyn Centre for Design

External
Professor Anastasios Maragiannis, Professor of Inclusive Design and Head of
School of Design, University of Greenwich
Dr Christopher Lim, Senior Lecturer / Programme Director, Design for Healthcare,
University of Dundee

INCLUDE 2022. Unheard Voices 1

Dr Johan Molenbroek, Associate Professor Applied Ergonomics and Inclusive
Design, Delft University of Technology, Faculty Industrial Design Engineering
Dr Joy Goodman-Deane, Senior Research Associate, University of Cambridge
Karin Bendixen, Founder, Bexcom
Dr Sam Waller, Senior Research Associate, University of Cambridge
Dr Stephen B. Wilcox, Chairman of the Board, Design Science
Associate Professor Silje Alberthe Kamille Friis, Head of Cross-disciplinary Program,
Institute for Visual Design

Conference Academic Director

Dr Melanie Flory, Research Director, Helen Hamlyn Centre for Design,
Royal College of Art

Conference Track Chairs

Track 1. Age and Diversity

Dr Chris McGinley, Senior Research Fellow, Helen Hamlyn Centre for Design,
Royal College of Art

Track 2. Humanising Healthcare

Tom Stables, Industry Project Researcher, Helen Hamlyn Centre for Design,
Royal College of Art

Track 3. Inclusive Design Applications

Gail Ramster, Senior Research Associate, Helen Hamlyn Centre for Design, Royal
College of Art
Dr Ninela Ivanova, Innovation Fellow, Helen Hamlyn Centre for Design,
Royal College of Art

2 INCLUDE 2022. Unheard Voices

Contents

Track 1. Age and Diversity

Digital Inclusion
p.9
Age Inclusive Digital Platforms
Michal HALPERIN BEN ZVI, Gerard BRISCOE and Sidse CARROLL
p.19
Towards the Inclusive Design of a Digital Sexual Health
Promotion Programme
Ana CORREIA DE BARROS, Joana COUTO DA SILVA, Nora RAMADANI
and Cristina MENDES SANTOS

Experience and Accessibility

p.35
Museums and Neurodiversity:
Designing safe, accessible and interactive experiences for
neurodiverse children
Adity GUDI, Shivani SHAH, Sonal RAJA and Sowmya SANAK
p.49
Feeling Seen and Heard:
Exploring the lived experiences of art students with dyspraxia
through experiential workshop participation. An evaluation of the
advantages of flexible modes of engagement
Emily ÖHLUND

Track 2. Humanising Healthcare

p.71
Design for Healing and Recovery from Eating Disorders:
A multidimensional design model
Silvia Neretti*
p.81
Humanization in Oncological Health Services:
A Brazilian case study
Patricia Raquel BOHN, Emanuele KÖNIG and Cláudia de Souza LIBÂNIO
p.90
Empowering Patientship:
Exploring the conceptions of patient-centeredness via definitions
and cases
Miso KIM, Michael Arnold MAGES, Stefano MAFFEI, Paolo
CIUCCARELLI, Beatrice VILLARI and Massimo BIANCHINI

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Track 3. Inclusive Design Applications
Environment and social impact
p.105
Access Denied:
Decoding barriers to accessibility in market streets of New Delhi
Rajshri JAIN
p.121
Design and Implementation of Self-adapting Toilets for Semi-
public Environments:
Reflections on transferring a home solution to semi-public places
Paul PANEK and Peter MAYER
p.133
Healthy and Inclusive Neighbourhoods:
A theoretical framework for hearing excluded city voices
Daniele BUSCIANTELLA-RICCI, Sara VIVIANI, Kiana KIANFAR and
Alessandra RINALDI

Fashion and Dress

p.145
Inclusive and Sustainable Fashion Product-Service System
for Evolving Bodies during / after Pregnancy
Daria CASCIANI and Maria Antonieta SANDOVAL RAMIREZ
p.161
A Qualitative Analysis of the Challenges for Women with
Physical Disabilities When Buying Fashion Online
and In-store
Yasmin KEATS, Ellen FOWLES and Grace JUN

Mobility
p.170
Inclusive Shared Autonomous Vehicles:
Identifying areas for inclusive design intervention
Robin SEVERS, Jiayu WU, Cyriel DIELS, Dale HARROW and Richard
WINSOR
p.188
People Moving Through Space:
Towards a comprehensive framework to decode spatial exclusion
Lakshmi SRINIVASAN

4 INCLUDE 2022. Unheard Voices

Academic Posters
Abstracts
p.208
Beyond Ageing Stereotypes:
Imagery & iconography
Gerard BRISCOE, Ivelina GADZHEVA and Imran NAZERALI
p.209
Determining the Social Value of Design:
Ageing in place
Lydia Lux ALEXANDER and Simon SCHRAPEL AM
p.210
Service Design Proposal for a Holistic Care Ecosystem to
Manage Polycystic Ovary Syndrome
Yashasri SADAGOPAN
p.211
Understanding Gender Bias in Pain Assessment and
Designing for Equitable Care Delivery:
Enabling equitable pain management
Anubhuti GUPTA
p.212
Design and Meaning Making through Collages and Language
Diversity in North Central Florida
Valentina SIERRA-NIÑO
p.213
Museums for All? Project Svaritha: Designing Empathetic
Museum Experiences for Socio-Economically Disadvantaged
Children:
A case study from the Indian Music Experience Museum
Rachel (Tiggy) ALLEN, Shivani SHAH and Lakshmi RAGHU
p.214
Computational Design Experiment for Older Adult’s Footwear:
Field-driven approach and product design applications
Sheng-Hung LEE, Maria C. YANG, Joseph F. COUGHLIN and Alejandro
CARCEL LOPEZ
p.215
Exploring People’s Behavior Through Tracking Assistive
Technologies:
Ultra-wideband wireless technology and applications
Sheng-Hung LEE, Olivier L. de WECK and Joseph F. COUGHLIN
p.216
Sensory Nourishment:
Exploring inclusive design methods within fashion practices
Maureen Selina LAVERTY

INCLUDE 2022. Unheard Voices 5

 p.217
Intersectional Design:
Design as a tool for social equity
Josef PACAL
p.218
Technology Futures Roadmap for the Longevity Economy
Gerard BRISCOE
p.219
The Inclusive Approach:
A methodology of the fundamental principles of inclusive design
Daisy POPE

6 INCLUDE 2022. Unheard Voices

Age Inclusive Digital Platforms

Track 1. Age and Diversity

Digital Inclusion

Age Inclusive Digital Platforms p.9

Michal HALPERIN BEN ZVI, Gerard BRISCOE and Sidse CARROLL

Towards the Inclusive Design of a Digital Sexual Health p.19

Promotion Programme
Ana CORREIA DE BARROS, Joana COUTO DA SILVA, Nora RAMADANI
and Cristina MENDES SANTOS

Experience and Accessibility

Museums and Neurodiversity: p.35

Designing safe, accessible and interactive experiences for
neurodiverse children
Adity GUDI, Shivani SHAH, Sonal RAJA and Sowmya SANAK

Feeling Seen and Heard: p.49

Exploring the lived experiences of art students with dyspraxia
through experiential workshop participation. An evaluation of the
advantages of flexible modes of engagement
Emily ÖHLUND

INCLUDE 2022. Unheard Voices 7

 INCLUDE 2022. Unheard Voices
11th Inclusive Design Conference
Helen Hamlyn Centre for Design
Royal College of Art London, UK
22-23 September, 2022

Age Inclusive Digital Platforms

Michal HALPERIN BEN ZVI*

Joint Distribution Committee
Gerard BRISCOE
Royal College of Art
Sidse CARROLL
Royal College of Art

As services increasingly shift online, older people need to utilise more digital
technology. However, many digital platforms still lack the inclusiveness
required for all older people to use and engage with them. Some using
technology frequently meet a digital world unsuited to their cognitive, sensory,
functional and socio-emotional abilities. So, their digital experience seldom
aligns with their digital literacy, or personal wants and needs. As most digital
platforms are not designed for older people, they are more likely to require
assistance to use them. This can impact financial resilience, health, and sense
of belonging. To encourage platform developers to utilise an inclusive design
approach, to better consider the needs of older people, we created guidance
for developing age-inclusive digital platforms. This involved focus groups,
interviews, and user testing. We analysed older peoples’ use cases,
interviewed development teams and reviewed best practices worldwide. This
resulted in a Hebrew-language booklet for developers and designers, which we
recently translated to English. With initial adoption, we are starting to see these
principles implemented in Israeli government and municipal digital services.
We hope to create further meaningful change in the usability of digital platforms
to improve the lives of older people, including our future selves.

Keywords: user experience; inclusive design; older people; digital

* Contact: Michal Halperin Ben Zvi | e-mail: michalHBZ@[Link]

9
MICHAL HALPERIN BEN ZVI, GERARD BRISCOE and SIDSE CARROLL

Introduction
Globally the 65+ age group is expected to increase from 9% in 2019 to 16% by
2050, more than doubling from 727 million to 1.5 billion (UN, 2020). These older
people are adopting technology more than ever before. So, the Internet,
smartphones, tablets, wearables, smart TVs and speakers are being used by a
growing number of older people. During the Covid-19 pandemic, this trend became
even stronger. In the UK, 54% of people 55+ have been using more online services
since the start of the pandemic, with 17% signing up to at least three new online
entertainment, socialising, or shopping services (Santander, 2020). Older people
are increasingly motivated to use digital technology, for example, 38% of older
Americans recently described the Internet as essential (Pew, 2021). However,
many older people still lack Internet connectivity or the skills to use technology, in a
way that would enable them to consume digital services. It was recently determined
that 22 million older Americans are still not online. With people 75+ particularly
likely to say they need help with new devices. With 66% saying they usually need
help setting up a new computer, smartphone, or other electronic devices, compared
with 48% of those aged 65 to 74 (Pew, 2021). This and other challenges lead to
less usage of digital platforms. In Israel, the underutilisation of basic digital services
by older people (65+ years old), compared to younger people (20-65 years old), is
well documented, as summarised in Table 1.

Table 1. Social Survey 2020: The percentage of younger and older people that make use of basic
digital service types - summarised from (Central Bureau of Statistics, 2020)

Banking Shopping Online

Search for Social
E-mail and paying or online government
information media
bills services services

Younger
People 77% 77% 68% 52% 52% 90%
(20-65)

Older
People 55% 46% 37% 20% 26% 69%
(65+)

This difference demonstrates the broader problem of the Digital Divide, when
different groups in society have different levels of access to digital technology
(Cullen, 2001). While the inequity of the Digital Divide begins with differential
access, it leads to inequity in opportunities for economic mobility and social
participation (DiMaggio et al., 2004). This can have major impacts on mental and
physical health, as well as their ability to function in and contribute to society.
Therefore, overcoming the Digital Divide, with regards to age, can improve labour
opportunities; economic efficiency and productivity; ease of activity, connection and
leisure; ability of individuals to access health services and other public services; etc
(Khvorostianov, Elias and Nimrod, 2012). The challenge is not only to empower
older people by providing access to digital technologies and enhancing digital
literacy, but to ensure age-friendly design and relevance of digital services that
embrace the diversity of ageing populations. Currently, many digital platforms do
not meet the needs and abilities of older people. For example, it was reported that
40% of older people feel that the design of technology does not consider them

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 Age Inclusive Digital Platforms

(Kakulla, 2022). Furthermore, older people are twice as likely to abandon a digital
task than younger people, and 30 seconds earlier than their younger counterparts
(Petrovčič, Rogelj and Dolničar, 2018; Chisnell and Redish, 2005). While
accessibility requirements assist with the challenge, they generally do not exhaust
the usability potential of digital platforms. For example, many sites and apps satisfy
accessibility criteria, but then fail usability tests (Petrie and Kheir, 2007). So, the
focus should be on improving usability to close the gap left by accessibility
requirements (Johnson and Finn, 2017). Some older people suffer from cognitive,
socio-emotional, and sensory changes that affect the way they perceive and use
digital platforms. Compared to younger users, they may perform worse on tasks
that require memory, be more easily distracted, require more time to study new
tasks, use different search strategies, and make more mistakes or perform more
random actions (Bergstrom, Olmsted-Hawala and Jans, 2013).
The remainder of this paper is organised as follows. The next section (2) considers
the study design for developing the design guidance for age-inclusive digital
platforms. The following section (3) presents the results, and the final section (4)
discusses the conclusions.

Study Design

Introduction
The Joint Distribution Committee (JDC) is a global Jewish humanitarian
organisation. The goals of JDC Israel, also known as The Joint, include promoting
quality of life and equitable opportunity, narrowing socioeconomic inequities. One of
their programmes is the Digital Literacy for Older Adults initiative, in partnership
with the National Digital Agency, which has operated over the past four years. It
aims to put technology in the hands of older people to achieve meaningful
outcomes, empowering them in their personal lives. The initiative is achieving its
goals by improving digital literacy through training; providing tablets and Internet
connectivity to those with decreased functional ability, economic difficulties or that
are homebound; and providing the tools, knowledge and best practices for age-
inclusive digital platforms. Thus far, more than four thousand older people and one
thousand professionals have been trained.
A number of principles have been formulated for designing and adapting digital
platforms to include older people. Some include the issue of accessibility and relate
to the areas of universal, inclusive and person-centred design generally. While
others include aspects unique to older people, which originate from psychosocial
features and low digital literacy levels. We aimed to consolidate this existing
knowledge and make it more accessible to professionals to improve usability in
practice. Providing them with best practice and practical tools, to ensure their digital
platforms are inclusive, especially age-inclusive.
The translation of the guidance to English was done in collaboration with the Royal
College of Art (RCA), which will be described further in subsection 2.3. The RCA
has a long history of Inclusive Design, dating back to the 1990s, where Coleman
and colleagues introduced this then new approach to design for ageing. In which, it
was essential to move beyond considering ageing as just bodily needs and medical
decline, instead, considering people’s lives holistically when designing (Coleman,
1994; Clarkson and Coleman, 2015). An integral part of the programme consisted
of training future designers, i.e. design students, to engage with older people
through inclusive design.

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MICHAL HALPERIN BEN ZVI, GERARD BRISCOE and SIDSE CARROLL

Methodology
We conducted a literature review including (Morey et al., 2019; Silva, Holden and
Jordan, 2015; Lee and Coughlin, 2015; Petrovčič, Rogelj and Dolničar, 2018), as
well as non-academic literature such as (Kane, 2019). We consulted a focus group,
8 participants aged 65-80, who were asked for their feedback on a set of examples
with regards to the User Experience (UX) design. We also conducted usability
testing for a small number of essential digital public services, including healthcare,
banking, email and local municipalities. These were done with 8 participants, both
male and female, aged 65-85, who had low to medium digital literacy, for which the
main challenges were observed and documented. We also conducted 20 in-depth
interviews with leading Hebrew speaking industry UX professionals and academic
researchers. Integrating the literature analysis, participant feedback (frequency of
comments, and criticality of elements to complete tasks) and expert interviews, we
identified the five most critical issues for developing digital platforms to increase
usability for older people:
1. visual aesthetics
2. wayfinding, navigation and information architecture
3. microcopy and UX writing
4. flow, friction and feedback (navigation)
5. motor aspects (interface operation)
We subsequently organised 5 learning groups in response, with UX professionals
and academic researchers recruited through open invitations on social media. For
the 112 who responded, we divided them across the learning groups according to
their experience of digital platform development for older people. So, there were a
similar number of those with different levels of experience in each group. They were
asked to share their experiences with usability testing and best practices, as well as
examples of failure and success. An older person was invited to join each group, to
contribute their own perspectives. Five meetings were held in total, one for each
group, which were recorded and analysed, grouping the main insights into key
themes. Subsequently, 20 key participants from the learning groups were asked to
join our existing expert group, of UX professionals and researchers, in validating
our guidance. They were asked to comment on the structure of the guidance and
chapter content, as well as the accessibility and usefulness of the guidance itself.
Subsequently, the Hebrew guidance was translated to English to reach additional
audiences. This was assisted by collaborators based in the field of Inclusive
Design, ensuring that the intended inclusiveness remained in the translation. The
translation of the language and culture is described in the next subsection 2.3.

Translation
Cultural translation is the practice of translation while respecting and acknowledging
cultural differences. As culture gives birth to language, translation and culture are
intimately connected. Meanings in both source and target languages are profoundly
affected by their cultural context. A phrase that appears easy to translate may
actually contain cultural subtleties that, unless they are accounted for, can bring just
the opposite meaning than is intended. So translation without deep cultural context
can be dangerous, especially when meanings are critical (Carbonell, 1996; Aixelá,
1996). Translation plays an important role of crossing through different cultures and
communication. Therefore, it is one of the essential, fundamental, and adequate
ways of transferring culture, but there are some limitations, including censorship
and even culture itself. So, a good translation should simultaneously be aware of
the cultural factors, such as views and tradition, to consciously consider the

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 Age Inclusive Digital Platforms

chronological ordering and explicit meaning, as well as historical and cultural

background contexts (Abbasi, Hossain and Owen, 2012).
In practice, our language and culture translation involved a first stage by a native
Hebrew speaker, who spoke English as a second language, which was primarily
language translation. Then, a second stage, by native English speakers, which was
primarily cultural translation. This stage involved determining the typical terminology
in context, changes from writing orientation, as well as American and British
language differences. For example, when referring to online services and websites,
the typical terminology is digital 'platforms' rather than 'products'. The American and
British language differences were more nuanced, especially when considering an
international audience, and beyond spelling differences. While American English
may be globally dominant in terms of spelling, British English terminology regarding
smartphones is globally dominant. For example, the word 'mobile' or term 'mobile
phone', rather than 'cell' or 'cell phone'. There were also potential cultural
differences regarding intergenerationality and technology adoption that had to be
considered.

Results
The guidance was divided into 5 chapters, corresponding to the required stages in
digital platform development (Halperin Ben Zvi, 2021). Each chapter presents a true
story demonstrating an issue in the lives of older people using digital platforms,
which is followed by an explanation of its significance and guidance for managing it.
The guidance also provides information regarding the changes that occur with age,
and their implications for the behaviour of older users.

Information Architecture, Orientation & Navigation

As age increases, sometimes, the speed of information processing decreases,
taking longer to absorb, comprehend and perform certain actions (Anstey and Low,
2004). Also, many people aged 65+ find it difficult to ignore distractions, and are
more prone to perform random actions, including unintentional clicking. Some feel
insecure and unable to orientate themselves within digital environments. Therefore,
inclusive information architecture principles should be observed when designing
digital platforms, with the main guidance for designing better information
architectures and hierarchy formation as follows:
- refine the required actions and include shortcuts
- rely on recognition to ease navigation:
o allow going back
o design clear navigation buttons
o remain consistent, and provide hints for their location (within the
process)

Microcopy & User Experience Writing

Many older people rely on the written word of digital platforms, usually reading more
carefully than younger people, who rely more on usage habits and familiarity (Fan,
Zhao and Tibdewal, 2021). Therefore, text should be concise and well placed
throughout the user journey to strengthen a sense of success and capability. For
example, clear articulation of error messages, including instructions for repair
actions, strengthens the sense of efficacy for older (and younger) people. This is
because it helps them cope with uncertain situations, reducing the risk of

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MICHAL HALPERIN BEN ZVI, GERARD BRISCOE and SIDSE CARROLL

abandonment. The following guidance helps with writing microcopy and design
messages to provide high usability, allowing older people to enjoy using it
successfully (as demonstrated in Figure 1):
- Direct ‘down-to-earth’ writing - familiar words, with clear and simple
phrasing.
- Add dialogue messages and success feedback, especially during
uncertainty in the user journey, including reassuring notifications upon
successful actions.
- Accurate and clear error messages with a call-to-action - explaining the type
of error in plain language, and providing a choice between responses,
including explicit instruction for a solution and the call-to-action.
- Control the rate of progress when possible, best avoid messages (pop-
up/toast) that appear and disappear on their own. Instead, allow the user to
confirm or cancel action.

Figure 1. Example Microcopy & UX Writing Guidance: A better design for the common 404 error

User Interface & Design Decisions

Many older people experience decreased eyesight (Freeman et al., 2007), including
difficulties seeing up close (age-related farsightedness), as well as differentiating
between certain colours and the hues of a colour. Also, many do not use accessibility
add-ons and do not change device settings, which can make usage much easier. So,
a good choice of colours, fonts, and size of objects allows older users to use digital
platforms more easily. We have developed 6 simple principles to follow, building upon
the WCAG accessibility standards (W3C, 2008; 2018). Implementing these principles
at the early stages of digital platform design will help older and younger people with
visual impairment:
1. Choose font size and spacing, which makes it easier to identify letters and
read (preferably Sans Serif).
2. Maintain high contrast.
3. Large, well-spaced objects, ensuring operation does not require fine
gestures and accuracy.
4. Deliver information through colours, but adding icons to not rely solely on
colour to mark actions.
5. Use pictures and icons similar to their real world counterparts, and add text
tags to icons where possible.
6. Provide salient and clear information regarding invisible expandable
components.

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 Age Inclusive Digital Platforms

Forms, Registration & Sign-in

Changes may occur with age, affecting memory and the ability to plan, execute,
and delay response (executive functions) (Anstey, 2004). Filling many details into
forms and creating passwords (especially hard to remember ones) is tedious for all,
even more so for older people. Therefore, when designing fillable forms, we
recommend examining their necessity and whether to remove them. If unavoidable,
they should be simplified as much as possible, making it easier for older people.
We recommend writing a short explanation about the necessity of registration when
required, and reducing the number of fields, designing them to be user-friendly, as
demonstrated in Figure 2.

Figure 2. Example User Interface & Design Decisions Guidance: A better design for user registration

User Research
To enhance the adoption of digital platforms by older people, it is highly
recommended to use UX research methods, including user testing and usability
testing (Mannheim et al., 2019), throughout the development process. Not only to
examine existing digital platforms, but also in developing new ones. When planning
user research, it should be noted that the older age group is highly diverse;
spreading potentially over 40 years with greater in-group differences than any other.
So, avoid ageism when recruiting, and prevent self-ageism as follows:
- Avoid mentioning participant age and referring to limitations/disabilities
characteristic of their age group.
- Ensure clarity by providing clear and accurate instructions to reduce stress.
- Provide feedback to participants where possible, as to whether their
comments were considered.
- Ensure fairness and ethical standards, with short and simple consent forms.
- Ensure accessibility, including with user devices and physical environments.

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MICHAL HALPERIN BEN ZVI, GERARD BRISCOE and SIDSE CARROLL

Conclusions
The challenge of equity in the Inclusive Design of digital technologies, includes
unfriendly (exclusionary) design and functional irrelevance for older people, which
can then become barriers to use. The design of interfaces typically does not
address the requirements for a diverse range of users, failing to meet criteria for
accessibility, usability and inclusivity. This can negatively affect older people,
particularly those with physical or cognitive disabilities. Design processes often
occur without the input of all end users, because of preconceived judgments
regarding who will use specific digital technologies (UNECE, 2021). When digital
technologies are specifically designed for older people with disabilities, it typically
reflects the ageism of designers - their implicit stereotypes about ‘the older
technology user’. Instead, we need inclusive, age-friendly design in the
development of mainstream digital technologies (Rothwell, 2017). This would
ensure economies of scale, as well as widespread social acceptance of the
enabling digital technologies, minimising the potential for stigmatisation.
The limitations of this work includes a lack of empirical confirmation that following
the guidance will increase usability, and whether this would be through greater
engagement and/or retention. Also, whether detailed instruction, rather than
broader guidance, may be required for certain challenges, such as payment issues.
Building upon our approach of involving multiple stakeholders in collaborative
efforts, there should be greater collaboration between academia, industry,
government, third sector, and older people. This should include case studies
reflecting on the effectiveness of applying the guidance to digital platforms. This
could include banking, online shopping, leisure, sports, and lifelong learning. Over
the next two years, our goal is to implement the guidance in two different ways.
First, working with major organisations to improve their digital platforms with the
guidance, testing changes in use by older people. The first three are MOOVIT
(most used public transportation app in Israel), Clalit (largest healthcare provider in
Israel) and Ashdod municipality (as an exemplar of better serving older residents).
Second, increase awareness among designers of digital platforms by incorporating
the guidance into the syllabus of higher education institutions; and informing
professional designers how to make use of guidance through conferences,
webinars and publications. This aims to ensure that future designers are aware of
age-inclusivity, and therefore included in the design of future digital platforms to
improve usability in practice.
The coronavirus pandemic identified broad socio-economic challenges, and acutely
how the lack of digital usage can increase isolation, affecting both mental and
physical health. It showed worldwide that participation in digital platforms could
mitigate feelings of social exclusion in times of physical distancing (Seifert, 2020).
The pandemic highlights the importance of the usability of digital platforms for
improving the lives of today’s older people, and our future selves. We hope that the
guidance, along with change in awareness, will lead to greater inclusion.

Acknowledgements: We would like to express our great

appreciation to Didi Ben Shalom, Head of Digital Inclusion at
JDC-Eshel, and Selly Bynessayn, Head of Digital Literacy at the
National Digital Agency, for their valuable and constructive
suggestions during the planning and development of this
research.

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 Age Inclusive Digital Platforms

References
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 INCLUDE 2022. Unheard Voices
11th Inclusive Design Conference
Helen Hamlyn Centre for Design
Royal College of Art London, UK
22-23 September, 2022

Towards the Inclusive Design of a

Digital Sexual Health Promotion
Programme

Ana CORREIA DE BARROS*

Fraunhofer Portugal AICOS
Joana COUTO DA SILVA
Fraunhofer Portugal AICOS
Nora RAMADANI
KBO-PCOB
Cristina MENDES SANTOS
Fraunhofer Portugal AICOS

Designers creating products to promote sexual health find little guidance to

make their products inclusive, especially considering the stigma associated with
taboo subjects and cultural associations with sexuality and intimacy. To
overcome this limitation, we used mixed methods to inform the design of a
smartphone app to deliver a sexual health promotion programme to older adults
and their partners, also including colorectal cancer survivors as an extreme user
group. Our findings pointed towards the relevance of app behaviour and, thus,
led us to conceive of the app as an agent. Therefore, we suggest the concept
of Rules of Etiquette to complement prescriptive design pattern and function
guidelines. At a time when digital interaction becomes growingly dematerialised,
identifying behaviour rules may be more appropriate for intangible interaction
than traditional guidelines alone and a promising way to pursue inclusive design
around sensitive topics.

Keywords: design research methods; sexual health; mHealth; ageing

* Contact: Ana Correia de Barros | e-mail: [Link]@[Link]

19
ANNA CORREIA DE BARROS, JOANA COUTO DA SILVA, NORA RAMADANI
and CHRISTINA MENDES SANTOS

Introduction
Although sexual health is an important component of wellbeing and quality of life,
older adults and people with chronic diseases are often still barred from
experiencing a positive, healthy, and fulfilling sex life (Smith et al., 2019).
Smartphone apps can be a suitable vehicle to promote sexual health among these
user groups. They are intimate and ubiquitous objects which can avoid the stigma
of seeking personal sexual help, motivate engagement, and help overcome
geographical barriers to getting sexual health support. Although older adults are
often associated with low digital technology use, this age group has been steadily
increasing its access and use of digital technology, such as the Internet (Hunsaker
and Hargittai, 2018).
To be inclusive, such technology should welcome diversity beyond age and digital
literacy, accommodating a spectrum of gender identities, sexual orientations, sexual
behaviours, and relationship arrangements. It should allow being used by people
with or without sexual partners.
Inclusive Design advocates for the inclusion of diverse users in the design process,
including extreme users (Dong et al., 2005). However, when it comes to sensitive or
taboo topics, literature is scarce on guidance about how to deliver inclusive
designs. Behaviours and attitudes towards sexual health also vary greatly
depending on the culture (Sinković and Towler, 2019). Therefore, inclusive design
applied to the topic must be culturally sensitive as well.
Drawing on our experience in a multi-partner European project developing a
smartphone-based programme to promote sexual health among older adults,
including those with chronic disease, we suggest that inclusive design guidelines
can be about technology behaviour and not just about product/interaction design
features.

Related work
Despite its relevance, inclusive design for sexual health has been underexplored.
Researchers’ work with sensitive or taboo topics, such as menstruation or sexually
transmittable diseases, has not so much led to design guidelines as to researchers’
reflections about going about codesigning. Examples are using humour, enabling
safe spaces, using fictitious scenarios or creating embodied experiences (Almeida
et al., 2016; Wood, Wood and Balaam, 2017).
Research in inclusive design has sought to identify general guidelines for inclusive
products and spaces (e.g., Mace, Hardie and Place, 1991; Abascal and Nicolle,
2005; Kascak, Rébola and Sanford, 2014). It has tried different approaches to help
designers adopt inclusive design through calculating exclusion (Waller, Langdon
and Clarkson, 2010) or sharing methods to design with extreme users (Dong et al.,
2005). Gender is also growingly problematised as a relevant dimension of inclusive
design (Weixelbaumer et al., 2014; Burtscher and Spiel, 2020).
Regardless of the focus, papers group around 1) raising awareness among
designers about inclusive design, 2) providing tools to create inclusive designs, and
3) providing tools to design with a wide diversity of users. We aimed at contributing
to no. 2.

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Methods and participants

We used mixed methods to identify design principles for the design of a
smartphone app to deliver a sexual health promotion programme (that can be
thought of as a self-help course) for older adults, people with chronic disease and
their partners in different European countries. We began by trying to capture unmet
needs and gradually moved into specific aspects.
Our study received ethical approval from the ethics committee of the oncology
hospital IPO-Porto. Informed consent was obtained from all participants before
each procedure.
The study had two large phases: Phase 1 to elicit design requirements and Phase 2
where we conceptualised and pre-tested rules towards inclusive app behaviour.
The activities from Phase 1 are listed and numbered in Table 1. Each line describes
activity, purpose, participants, and countries involved.

Table 1. List of activities used in Phase 1

Activity Purpose Participants Country

1. Archetype Create provocative archetypes Consortium Portugal,
exploration to foster reflection among the (designers, Netherlands,
design team engineers, Kosovo,
sexologists) Norway,
Austria
2. Couple Create speculative designs Design team Portugal
interaction about how sexual couples
exploration could use the app
simultaneously
3. Online Understand unmet needs and 1.119 older Netherlands
questionnaire attitudes towards a sexual adults
health promotion app
4. In-person Understand: 6 older Netherlands
Workshop - barriers and facilitators to adults
using the app
- appropriate tone of voice for
the app
- preferred mode of delivery
- design components
contributing to
trustworthiness
5. Online Validate: 111 older Netherlands
questionnaire - tone of voice for the app adults
- preferred mode of delivery
- design components
contributing to
trustworthiness
6. In person Understand appropriateness 9 older Netherlands
workshops of anatomical illustrations adults

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ANNA CORREIA DE BARROS, JOANA COUTO DA SILVA, NORA RAMADANI
and CHRISTINA MENDES SANTOS

7. In person Understand appropriateness 4 older Portugal

workshop of anatomical illustrations adults
Assess text usability and
perceived cognitive load
8. Usability Understand appropriateness 4 older Portugal
tests of anatomical and medical colorectal
device illustrations cancer
survivors
4 healthcare
professionals

Results from Phase 1

In this section we provide the results obtained with each activity and, where
relevant, these results are intertwined with discussion and/or implications for
design.
In Activity 1, before getting ethics approval to engage with users, we created
individual and couple archetypes based on a literature review and the Genderbread
Person (hues, no date). Each archetype had a fictitious scenario (Figure 1). These
materials were used in co-creation workshops with the consortium and allowed to
explore implications of different combinations for design features, content, and app
navigation. Through this exercise, we became aware of the importance of
addressing sexual fluidity and accommodating the needs and realities of extreme
users and couples. These findings set the tone for subsequent explorations.
Based on a list of couple exercises usually prescribed by sexologists, we created a
set of speculative designs (Activity 2). In these designs, we explored how the
communication and geolocation of smartphones could be used to instil users to
engage in the exercises and to augment the proposed activities. We concluded that
exercises imposed the presence of a smartphone, like a third party between the
couple. We wondered how users would react to sexually charged notifications and
whether they would be embarrassed to have them on their phones. We questioned
which role aesthetics would play between being sufficiently discreet, while
simultaneously engaging and provocative. Here, the thought of the app as an agent
(Latour, 1992) started taking form.

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Figure 1. Examples of archetypes and scenarios

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ANNA CORREIA DE BARROS, JOANA COUTO DA SILVA, NORA RAMADANI
and CHRISTINA MENDES SANTOS

Figure 2. Explorations of smartphone-smartphone exercises

With the questionnaire in Activity 3, we learned that men engaged more in our user
research and were more willing than women to use an app such as the one we
intend to create. We learned that among respondents (all over 55 years of age,
mean age 74) many were sexually active, but roughly ¼ experienced an impairment
that interfered with sexual activity. We learned that users are wary of the Internet to
look for reliable information on sexual health. Finally, through qualitative analysis of
open-ended questions, we learned that people need advice, need information, and
might also just need a listener.
Accordingly, we understood that the app needed to be highly trustworthy, and we
ran an in-person workshop (Activity 4) to explore various aspects of
trustworthiness. We began with an overview of questionnaire results from Activity 3,
which motivated a discussion into barriers and facilitators of app use. Following the
discussion, we presented participants with sets of cards resembling smartphone
screens to remind participants at all times that the workshop revolved around a
future app. Based on an example by NN/g (2016), the first set of cards presented
the same information about the programme and its modules, but using different
combinations of tone of voice (Figure 3). Using two different screens, we also
probed whether having hidden information, in this case, button labels, would affect
trustworthiness (Figure 4).

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Figure 3. Four images used for the tone of voice exploration

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ANNA CORREIA DE BARROS, JOANA COUTO DA SILVA, NORA RAMADANI
and CHRISTINA MENDES SANTOS

Figure 4. Two images used for the trustworthiness exploration.

The same images were shown in an online questionnaire (Activity 5) launched in

the Netherlands, which got 111 respondents. Results from Activity 5 confirmed
those in Activity 4. Participants preferred a tone of voice that is Serious, Casual,
Respectful and Matter of fact, with a certain openness to wit. This tone combination
is consistent with what NN/g (2016) found for health-related websites. To
participants, a screen with visible button labels was not more trustworthy than one
without. Participants preferred a cleaner screen and requested plainer language.
We also learned that participants preferred following the programme in self-guided
mode rather than having support or guidance from a sexologist.
Activities 6, 7, and 8 delved into anatomical illustrations. Especially when
prominent on the screen, illustrations can be a sensitive matter, thus we wanted to
understand how to best design them to be appropriate and non-stigmatising. We
also tested whether abstract and metaphorical variations could be used as app
illustrations, e.g., in splash screens or screen transitions (Figure 5, Figure 6). From
Activity 4, we learned that meanings of metaphorical and abstract images are
difficult for users to grasp. For educational purposes, all users prefer figurative
images, but there are nuances. The first nuance is cultural, as users in the
Netherlands did not want to feel schooled about anatomy, while Portuguese users
found it relevant. The second nuance relates to sex: whilst all were generally
comfortable with the representation of male genitalia, female genitalia raised
several discussions because the woman looks exposed and, for some users, it

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invites penetration. This is critical to healthcare professionals, not least because, for
some colorectal cancer (CRC) survivors, penetration may no longer be possible.
Finally, all users feel uncomfortable with too much context, especially for vulvas,
e.g., pubic hair, buttocks, inner thigs. This might be related to how historically
vulvas have been represented and which are being challenged today (Strömquist,
2018).
For Activity 8 participants were CRC survivors, as well as CRC healthcare
personnel. We added ostomy bags and stomas (an opening in the abdomen
connecting to the intestine) (Figure 7) to the existing illustration. In this activity there
was misalliance among participants: whilst CRC survivors were comfortable with
the figurative images because they were able to understand them, healthcare
professionals suggested that images should be more abstract not to shock or
school CRC survivors, and deter them from using the app.

Figure 5. Figurative. abstract and metaphorical female genitalia

Figure 6. Figurative. abstract and metaphorical male genitalia

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ANNA CORREIA DE BARROS, JOANA COUTO DA SILVA, NORA RAMADANI
and CHRISTINA MENDES SANTOS

Figure 7. Images of ostomy bags and of stomas

Rules of etiquette – Phase 2

Human sexuality is a highly sensitive topic, especially when coupled with ageing
and disability. We learned that perceptions vary between countries, between
patients and healthcare professionals, and we also learned that what people find
appropriate differs for male and female genitalia illustrations.
We understood that, while the smartphone can be considered an intimate and
ubiquitous technology, it can also be a third element in a relationship, drawing the
couples’ attention away from one another. It can be, in effect, an agent (Latour,
1992).
Considering the exposed above, we can see that the subject of design in this case
is the behaviour of this agent in the different situations it finds itself in. This agent
can be conspicuous when bringing users’ attention to something in the sexual
health promotion programme that is worth paying attention to, but it should be
discreet enough not to stigmatise users. This agent should, in some situations,
show users images that they can easily interpret, but, in other situations, use
ambiguous imagery to stimulate users’ imagination.
This agent should have a serious, casual, respectful, and matter of fact tone to
amplify the fact that this is an honest and evidence-based programme that does not
promise what it cannot deliver. But it should also employ humour as a resource to
put people at ease when dealing with taboo issues.
This agent may be interacting with people with or without a sexual partner. Some
users seeking support from the app may wish to learn everything about human
sexuality. Some might be offended at the idea of an app wanting to school them
about their own bodies.
Therefore, to design an app that would be inclusive of all these different needs,
rather than striving for design guidelines, we explored the concept of Rules of
Etiquette, the sub-parts of which are described next.

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The rules in theory

Behaviour and aesthetics

For couple exercises, the app should have a discreet presence, so that couples
focus on one another – one of the main goals of these types of programmes.
However, an experience that stimulates the senses may be useful for learning –
another main goal of the app. Instead of choosing one end of a spectrum, light
(soft) or bold (intense), we adopted a strategy to address both behaviours (Figure
8): when the user is alone, learning about sexual health, the app will have an
impactful interaction with bold aesthetics, whose intense presence, when users are
exploring and discovering new things, will support them on didactic tasks. However,
when the user uses the app with a sexual partner or in a public context, the
application adopts quiet and subtle behaviour.
The app’s imagery and aesthetics strive to enchant users. Enhancing aesthetical
diversity, may foster distinct ways of seeing, allowing users to feel more open about
the unexpected through diverse compositions.

Figure 8. Behavioural spectrum given by graphical conspicuousness

Appropriation and flexibility

People may appropriate products in ways designers never anticipated (Akrich,
1998; Dix, 2007) – a phenomenon which is documented in disability and inclusive
design studies (Jacobson and Pirinen, 2007). When needs arise, users may
appropriate technology at hand, and thus, the more flexible the technology, the
easier the appropriation (Dix, 2007). Indeed, flexibility in use is also one of the
traditional inclusive design principles (Mace, Hardie and Place, 1991) and, here, it
should be flexible to account for gender identify, sexual orientation, among others.
Rather than app personalization, our etiquette favours flexibility, encouraging users
to engage and discover what seems unrelated to meaningful content.
Personalization of content can force users into their known range of interests,
whereas offering an alternative method for content discovery, including branching,
will prompt information unforeseen by users (Melo and Carvalhais, 2017). Diverse
interpretations and appropriations of the app are expected to contribute to a sense
of usefulness, ownership and, hence, increased use (Dix, 2007).

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ANNA CORREIA DE BARROS, JOANA COUTO DA SILVA, NORA RAMADANI
and CHRISTINA MENDES SANTOS

Providing flexibility of choice allows users to choose their relevant path and content
(Figure 9). Additionally, enabling users to skip steps rather than defining a
prescriptive procedure will allow tailoring personal experience at one’s own pace.

Figure 9. Range of options in body explorations

Serendipity
Appropriation and flexibility at once promote and are augmented by serendipity, i.e.
pleasurable accidental discovery. This app as an agent should use serendipity to
encourage positive engagement with the app and one’s sexuality. Designing for
serendipitous encounters will predispose users to engage with the app while
sustaining routines for couple interaction, along with communication and self-
discovery. The app could perceive nearby proximity to recommend or unlock
exercises requiring the couple’s involvement. To Melo and Carvalhais (2017), this
proximity awareness pattern is indeed a serendipity pattern.
Through Activity 4, we understood that users do not appreciate the presence of a
third voice in the application dialogue. To mitigate this feeling, the app could deliver
information via discreet hints to guide users. As an example, hints could appear as
notifications when the phone is locked, but without revealing information in full to
protect users’ privacy (Figure 10). Only when the phone is unlocked, are users able
to see the full content designed to guide users to accomplish exercises or engage
with new ones.

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Figure 10. Notifications do not disclose sensitive information

Pre-testing the rules in practice

We did a two-week experiment with two adults (both had sexual partners) to
simulate the experience of receiving hints for couple interaction. At unknown times
of the week, each participant received a card (Figure 11). For each card, the
participant could choose to dismiss, shuffle to get another card or see more, in
which case the back of the card would be shown. To explore the role of aesthetics,
one participant received all hints with the same graphics, while the other received
always different graphics with varying degrees of complexity in terms of colour
palette, number of elements, or prominence on the screen. We did post-experiment
interviews with participants about their experience.
From this brief experiment, we learned that participants could identify the best times
of the day/week to receive hints, that surprise of receiving a hint and variety in
aesthetics enhanced user experience, and that abstract images let users imagine
meanings for the graphics. It seems that more suggestive than prescriptive content
is preferred, because it helps participants appropriate the hints. The tone of voice of
such a proximal agent was something participants positively alluded to, especially
the fact that it did not seem to speak like a regular app.

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ANNA CORREIA DE BARROS, JOANA COUTO DA SILVA, NORA RAMADANI
and CHRISTINA MENDES SANTOS

Figure 11. Examples of two hint cards (front and back)

Conclusion
We reached the suggestion of Rules of Etiquette after conceptualising the app as
an agent. Although we have not yet tested the concept at scale, which is a
significant limitation, we consider this can be a concept to explore by other
applications especially in interaction design, where inclusion level can be
determined by behavioural appropriateness of the digital agent.
Rules of Etiquette may be more ambiguous and, therefore, more challenging to
implement, and certainly need to be complemented with traditional design
guidelines. However, growing communities designing for intangible interactions and
for sensitive topics may find that considering technology as an agent and focusing
on its behaviour may prove to be a valuable resource towards inclusion, since, to
users, this behaviour will determine what is or is not appropriate.

Acknowledgements: The authors would like to thank all

research participants for their generous collaboration, as well as
for the funding by the European Commission, the Portuguese
Foundation for Science and Technology (FCT), and ZonMw
(AAL-2020-7-133-CP; AAL/0004/2020).

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Weixelbaumer, B. et al. (2014) Gender-Inclusive User Interface Guidelines. Techreport
D2.3.
Wood, M., Wood, G. and Balaam, M. (2017) ‘Sex Talk: Designing for Sexual Health
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Children. New York, NY, USA: Association for Computing Machinery (IDC ’17), pp.
137–147. doi:10.1145/3078072.3079747.

34 INCLUDE 2022. Unheard Voices

 INCLUDE 2022. Unheard Voices
11th Inclusive Design Conference
Helen Hamlyn Centre for Design
Royal College of Art London, UK
22-23 September, 2022

Museums and Neurodiversity

Designing safe, accessible and interactive experiences
for neurodiverse children

Adity GUDI*
Indian Music Experience Museum

Shivani SHAH
ReReeti Foundation

Sonal RAJA
ReReeti Foundation

Sowmya SANAK
Svarakshema Foundation

Cultural institutions like museums are often sensorially unsafe and

overwhelming for children with neurodiverse needs (CwNn). This can make
access difficult, excluding them from fully experiencing culture. This paper
details the Indian Music Experience Museum’s (IME is India’s first interactive
and experiential music museum) pilot project aiming to create a safe, inclusive
tour experience and engagement through music therapy workshops with home-
based musical toolkits for CwNn.
Using a participatory action methodological approach, 55 caregivers of CwNn
were surveyed, 10 parents and 6 disability advocacy professionals were
interviewed. Seventy-five percent of the survey participants have Autism
Spectrum Disorder (ASD), 18% Intellectual Disability (ID) and 16.6% a dual
diagnosis respectively. Online surveys, focus group discussions, interviews,
and site visits, were conducted to gather qualitative and quantitative data.
Further, toolkits were designed and customised instruments were developed.
Three focus areas of this initiative were: modifications to infrastructure to create
a barrier-free environment, immersive tour experiences, and music therapy
workshops. Both the tour experience and the music therapy workshop received
positive feedback. An evaluation of the efficacy of musical toolkits indicated
improvements in the parameters of cognition, social skills, and behaviour. The
initiative explores opportunities to integrate and engage CwNn in public places.

Keywords: museum; neurodiversity; accessibility, music therapy

* Contact: Adity Gudi | e-mail: aditycgudi@[Link]

35
ADITY GUDI, SHIVANI SHAH, SONAL RAJA and SOWMYA SANAK

Context
Museums are centres of information and exhibits on culture and history.
Specifically, music museums are resplendent with auditory and visual information
on different genres of music, in this case, the Indian Music Experience Museum
(IME – the first of its kind interactive and experiential music museum in Bengaluru,
India). This exposure could be sensorially overstimulating for Children with
Neurodiverse needs (CwNn), limiting them from fully experiencing music in various
forms. This paper details IME’s initiative to create safe, inclusive and interactive
experiences for CwNn. The initiative opens up this unique ‘public space’ for CwNn,
in a country where there is a dearth of access to such spaces and limited
understanding and awareness of both neurodiversity and accessibility. [Provision
for disability certification to individuals with Autism Spectrum Disorder (ASD) has
been introduced only in The Rights of Persons with Disabilities Act, 2016.]
Museums can be agents of cross-cultural understanding, fostering social inclusion
and promoting diversity (Sandell, 2003). Opening up such public spaces for all is
one of the many ways to ensure inclusion and leverage diversity. Inclusion and
integration of CwNn into public spaces begins with understanding neurodiversity
and identifying the scope of support. “A Parent’s Perspective” stresses lack of
preparedness and exposure to sensory stimulating environments (Bee, 2019),
especially sudden unexpected sound triggers (Gaines and Sancibrian, 2014), as
one prominent reason for CwNn being excluded from visiting public places (Bee,
2019). This strongly suggests the relevance of adding music, spatial re-organization
and other relevant materials to meet design recommendations (Gaines and
Sancibrian, 2014).
The museum applied a participatory and therapeutic approach to make it
neurodiverse-friendly by:
I. Making the museum space barrier-free,
II. Building an understanding of neurodiversity and creating customised tours for
this population, and
III. Curating interactive music-based workshops and handing them take-home
instrument kits, which could potentially have a therapeutic impact on the long-
term and offer sustained engagement with the museum (McPherson et al., 2019).

Aims and objectives

- Inclusion: Making the museum a space that provides equal access,
experiences, opportunities and resources to all.
- Accessibility: Removing physical and psychosocial barriers in the museum
to create easy access
- Safety: Making the museum a welcoming and safe space for CwNn and
their caregivers.
- Learning: Providing experiential and exploratory learning options, that allow
CwNn to comprehend, process, reflect and retain the experience beyond
their time at the museum.
- Engagement and opportunity: Creating meaningful engagements that are
interactive and enjoyable; leaving CwNn with a happy memory of the space
and a desire to revisit the museum.

36 INCLUDE 2022. Unheard Voices

 Museums and Neurodiversity:
Designing safe, accessible and interactive experiences for neurodiverse children

Ethical considerations
Careful consideration to protect the rights of the children and parents participating
in the research was taken. Any legal decisions or choices for an Indian citizen
below 18 years of age (considered as a minor / child) are taken by immediate
family, i.e. parents / guardians / caregivers or the applicable government authority,
as the case may be. Based on this premise, consent for participation in this initiative
was obtained from caregivers of CwNn, in cases where children could not make
informed decisions for themselves.
- Sensitivity and transparency: The research intent and the process was
explained in detail to the participants to ensure protection against any
inadvertent distress. Survey questionnaires were translated into the local
language to enable informed participation.
- Consent: Signed consent was obtained from the caregivers prior to the
survey, tour and workshop to gather and analyse the data, photograph and
video record the experience to document, share on media, use in research
and publish, sensitively.
- Confidentiality and privacy: Any identifying information pertaining to the
child or institution was used for research purposes only.
- Exposure to music: Music-based interventions have no known side effects.
(Geretsegger et al., 2016) Additionally, the instruments provided in the
music therapy kit were checked for child-safety standards in terms of the
material and design.

Methodology
Participatory research method was adopted in this initiative due to limited
models and data in this area, in India. This allowed the research participants
to be actively involved throughout the project and the facilitators to
understand the participants’ view of the problem to arrive at
recommendations collaboratively. The three different focus areas under this
initiative were:
I. Museum infrastructure: creating a barrier-free environment
II. Designing an immersive musical tour
III. Engagement through music therapy workshops
Inputs from relevant specialists, who were invited to experience the museum,
were incorporated into the execution.

Research Phase

I. Creating a barrier-free environment

Preparedness to become an inclusive museum

Access (onsite and online) and safety audit of the museum were done to identify
the challenges and recommend design modifications to meet the accessibility
requirements.

Reaching out to CwNn

Multiple organisations were reached out to discuss the intent and plan of this
initiative, encouraging participation of CwNn. A pre-visit survey was sent out to

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ADITY GUDI, SHIVANI SHAH, SONAL RAJA and SOWMYA SANAK

prepare the museum staff for all the necessary and special requirements of each
child. Fifty children of age group between 6 -18 years with diagnosed ASD and/or
ID, participated in the tour with their parents/caregivers.

Figure 1. a, b - Accessibility Audit

II. Experience - Immersive tour development

Method
The study was undertaken over 4 stages:
● Secondary research: literature review, case studies and site visits
● Data collection:
○ Quantitative data collection (bilingual pictorial online surveys)
○ Qualitative data collection (focus group discussions and
interviews)
● Findings and Analysis
Sample: Fifty-five CwNn were surveyed aged between 6-18 years with a
diagnosis of ASD and/or ID. Sample selection was through open invitation to
participate. Participants were from special and mainstream schools, and
partner organisations. All of them had access to the necessary technology,
enabling them to fill out online designed questionnaires for quantitative data
collection. Ten parents with their children and 6 sector experts were
interviewed for an in-depth understanding of qualitative aspects about the
target group.
The purpose of the survey was to understand:
- Individual needs based on the diagnosis
- Entertainment and relaxation activities
- Experience & relationship of CwNn with music

38 INCLUDE 2022. Unheard Voices

 Museums and Neurodiversity:
Designing safe, accessible and interactive experiences for neurodiverse children

- Challenges and limitations faced by CwNn in a public place

Findings from the survey

Sample demography
From the sample, the majority (75%) of participants had ASD, 18% had ID and
16.6% had a dual diagnosis. Many children also have comorbidities.
Understanding the CwNn
Most of the children (80%) did not need assistance in self-care, 50% of them
needed individual assistance while navigating a space. Approximately half (52%) of
the respondents shared no ability to recognize signages, with only 16.4% able to
read and recognise them. For communications, 45% of the participants used both
verbal and non-verbal methods like signages and gestures, 30% communicated
only verbally and 25% resorted to non-verbal methods of communication.
Information regarding museum tour design
The majority of children ( 55.6%) surveyed had not been to any museums before.
Those who have visited reported liking experiences that allowed movement,
exploration, hands-on activities and catered to their sensory preferences. Some
(15%) children disliked museums because they felt bored, disliked exhibits, sensory
aspects (e.g., dark spaces, crowds, sounds) and long waiting times.
Most parents report that during behaviour dysfunctions, having a calming zone, or
exposure to interesting audio/visual activities like listening to music, screen time,
etc. helps their children. The need for transition time or a preparation activity was
reported as essential during the tour by 71% of the parents. Most children need
structure or clear cues for an activity: of which 54% prefer visual cues and 16%
prefer verbal cues. 56% of children prefer being in small groups of 3-4, and 27%
prefer individual tours.
Information regarding visit preferences
Majority (58.5%) expressed a need to have details on tour, facilities provided, rest
and transition times, prior to the visit. Only a few (11.3%) reported being able to do
a 2-3 hour visit without a break, rest needed a break after every 30-60 mins. The
majority of parents report that their children are comfortable around strangers only
when accompanied by caregivers or familiar adults.
Preferences for music
Majority (85.5%) of children enjoy music. The most liked elements were the tunes
and rhythm. The most preferred music is fast and popular following film music.

III. Engagement - Music therapy workshop

Music is an effective learning and developmental aid for children with ASD and ID
(Peery, Peery and Draper, 1987). Importantly, music provides an access to the
psychology of children with ASD and ID (Zangwill, 2013). Through the application of
music as therapy, one can expect tangible improvements in areas of social and
communication skills, while their enjoyment of music in itself acts as a motivating
factor for participation (Ghasemtabar et al., 2015). Involving both passive and active
components of music therapy is critical to offering a holistic outcome for CwNn
(McPherson et al., 2019). Passive music therapy involves listening to carefully
selected music to help regulate sleep patterns, addressing mood variations, sitting

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ADITY GUDI, SHIVANI SHAH, SONAL RAJA and SOWMYA SANAK

span improvement and self-management. Active music therapy refers to prescribed

personalised activities using musical instruments that help to enhance cognitive and
social abilities, improve communication – both verbal and gestural, develop
patience by turn-taking, offer a leisure skill and even channelise or divert
expressions of anger or frustration. After relevant research, instruments suitable to
facilitate musical experiences and therapeutic results were identified and
customised to suit the convenience of CwNn while ensuring safety in material and
design.

Implementation phase

I. Creating a barrier-free environment

The recommendations from the audit and research were taken forward in two
phases - immediate & long-term implementation.

I.A. Immediate implementation

Facility modifications: The following measures were incorporated immediately to
make the museum space neurodiverse-friendly.
- Safety measures: A number of modifications were done to ensure the
safety of CwNn, the major ones being the addition of railings and
emergency intercoms to the elevators, speed regulation of the elevators,
and anti-skid and reflector strips and beading on the staircases and in the
cafe area.
- Change in the museum timings: ‘Early museum hours’ were introduced as
an additional choice for CwNn, in case some participants preferred it over
public timings.
- Calming and sensory zone: Two galleries (that qualified for least
stimulating spaces) inside the museum were chosen and modified into a
calming zone. Additionally, a classroom was converted to become a
temporary sensory room with various sensory elements as recommended
by the research findings.

Figure 2. Calming Zone / Sensory Room

40 INCLUDE 2022. Unheard Voices

 Museums and Neurodiversity:
Designing safe, accessible and interactive experiences for neurodiverse children

Development of toolkit: A communication toolkit that used the Picture Exchange

Communication System (PECS)1 was developed for the tour. It comprised
strategies for signalling, gathering, dispersion, transition and activity time.
Additionally, cue cards were provided to both the volunteers and children to
communicate assistance and emergency needs.
Website: An ‘accessibility’ tab was introduced on the museum website, providing
information on planning the visit, tour schedule and an access guide.
Volunteer training and staff sensitization: Two days of intensive in-person
training was given to volunteers (systematically selected) and select museum staff
(administrative, facility, security & housekeeping staff). This training included
didactic sessions, group work, manuals, handouts, and materials that would be
useful during the tours. The groups also worked on various hypothetical scenarios
to sensitise and experience challenges that may arise while working with CwNn.

Figure 3. Volunteer Training

I.B. Long-term implementation

- Accessibility requirements like railings, ramps, signages, pictograms,
alternative language descriptions (eg. Braille), floor maps
- Permanent sensory room
- Nursing stations

II. Experience -Immersive tour development

II.A. Design parameters

Keeping in line with survey findings and background research, the following six
parameters were devised for designing the immersive experience:

1
Pyramid Educational Consultants. (2014). PECS to SGD: Guidelines and Recommendations for a
Successful [Link] at: [Link]
[Link]

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ADITY GUDI, SHIVANI SHAH, SONAL RAJA and SOWMYA SANAK

1. Preparedness: Prior information creates familiarity, builds realistic

expectations and a sense of safety.
2. Relatability: Using existing knowledge to connect to new experiences
3. Environmental predictability: Providing necessary sensory cues to
navigate independently
4. Structure: Structure and sequence to any engagement helps in mental
grouping and provides clarity.
5. Transitions: Facilitating easy change and giving enough time to adjust to it.
6. Sensory customizable environments: Providing support for varying
sensory and emotional needs.

II.B. Tour development

The tour was designed to encourage maximum engagement, keeping in mind the
limited time, energy and possible challenges of the target population. The
customised tour also included planned-activities. The following were important
points of consideration:
- the access routes, which would entail the shortest and least stimulating path
to reach selected exhibits
- the duration of stops at each exhibit for exploration and activity
- the ease of doing the activities in the museum space, without additional
resources or any other background knowledge
- transitions and breaks to prevent overload and fatigue
- hands-on experiences

III. Engagement - Music therapy workshop

Ten music therapy workshops were conducted reaching out to 100 CwNn. These
workshops incorporated aspects of:
- Passive music therapy: A playlist, grouped into 4 sets – recommended
daily listening, positive reinforcement, meditative relaxing music and
immediate diversion music during emotional episodes, was given in a
pendrive to the caregivers as a part of the kit.
- Active music therapy: Children were taught musical activities, designed to
be performed on the chosen five instruments- xylophone for pattern
learning, didgeridoo for speech enhancement and breath regulation,
cymbals for participative playing and rhythmic cueing, Khanjira (frame drum)
for fine motor skills and cognitive enhancement and Clay-bird whistle for
self-engagement.
The caregivers were provided with a therapy kit bag containing five instruments, the
pen drive and an instruction manual to guide them through the suggested activities.
The therapists ensured follow-up of workshop activities and listening as per
recommendations.

42 INCLUDE 2022. Unheard Voices

 Museums and Neurodiversity:
Designing safe, accessible and interactive experiences for neurodiverse children

Figure 4 [Link] Therapy Tool Kit b. Child playing Cymbals

Findings and outcomes

To analyse the impact of this initiative, qualitative and quantitative feedback was
taken from the parents/caregivers for both the tour and workshop and additionally
from the volunteers, who conducted the tour.
A fun activity was designed especially for children to understand how they felt after
the tour (excited, curious, tired, happy, overwhelmed, etc.)
An evaluation of kit efficiency was done through a Google Form, to know utilisation
and therapeutic impact, after one month of the workshop.

Impact measurement - Immersive tour

Out of the 50 participants who did the tour, only 33 responded to the feedback
forms. The following are the key findings:
- A majority of parents / caregivers gave positive feedback on the tour.
- The most liked element was volunteer sensitivity and conduct, followed by
the choice of exhibits, and customised hand-on activities.
- The outdoor hands-on musical installations and the indoor digital
interactives were enjoyed most.
- The caregivers appreciated the availability of sensory and calming zones.
- Request for future engagements, including frequent visits, interactive
workshops, music courses, and exposure to new galleries.

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ADITY GUDI, SHIVANI SHAH, SONAL RAJA and SOWMYA SANAK

Figure 5. a,b Children enjoying outdoor and indoor musical installations

Impact measurement - Music therapy workshop

Out of 100 participants of the workshop, the following are the outcomes
representing the feedback from 62 participants.
- Workshop experience: All the participants unanimously expressed their
complete satisfaction and gave a 5-star rating to the demonstration of the
Music Therapy Kit with the instruments - their quality and functionality.

Figure 6. Music Therapy Workshop: Child learning to play the Didgeridoo

44 INCLUDE 2022. Unheard Voices

 Museums and Neurodiversity:
Designing safe, accessible and interactive experiences for neurodiverse children

- Utilisation data of kit: The compliance of the caregivers to the suggested

set of activities was recorded at 93.54% after one month of kit usage. Nearly
60% of the participants reported utilising both the active (instruments) as
well as the passive components (playlists) regularly.

- Therapeutic goal achievement: Participants were asked to select up to

three therapeutic goals (from communication, behaviour modification,
speech, social skills, self-management, fine and gross motor skills, and
others) for their CwNn during the workshop and an evaluation of progress in
these goals was conducted one month after the workshop through Google
forms. Through the use of the music therapy kit, 44.82 % of participants saw
fair improvement in all three chosen therapeutic goals, and 58.62% of
participants saw fair improvement in at least one therapeutic goal. Based on
the frequency of utilisation of the kit, 80% of regular users found fair
improvement in at least one therapeutic goal, while less frequent users
(31% of participants) have seen certain improvement in at least one
therapeutic goal.

Table 1. Therapeutic Goal Achievement based on kit components

Therapeutic Effect of Active Music

therapy components (Instruments)

Therapeutic Effect of Passive Music

therapy components (Playlist)

- Stress relief for caregivers: The benefits of the therapy kit were not
restricted only to the children as 72.41% of caregivers reported a significant
reduction in their stress levels with the use of the kit.

Discussion
The major learning from this initiative is the need to aggregate partnerships that
bring in expertise in museums, music, design & architecture, inclusion &
neurodiversity, and funding. This implies that a continuous flow of resources is
critical to sustain and expand the engagement with other target groups.
Additionally, understanding and meeting the demands of the ‘end-users’ is
imperative. It is important to explore how this initiative can holistically cater to both

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ADITY GUDI, SHIVANI SHAH, SONAL RAJA and SOWMYA SANAK

the CwNn as well as their caregivers. In our understanding, exclusiveness, by

providing choices and customised experiences for the neurodiverse, leads to
inclusion.

Limitations and challenges

- Lower than expected participation: Due to the higher susceptibility of
CwNn to infections and illness, the caregivers expressed hesitation to visit
public places, such as the museum, especially owing to the pandemic.
- Facility modification: Implementing infrastructural recommendations were
challenging as the main design and civil work of the building could not be
changed.
- Funds: This museum being a non-profit organisation, had limited availability
of funds. Hence, some of the audit recommendations for immediate
implementation were deferred.

Future recommendations
Some suggestions that were derived from discussions post the implementation and
would go a long way in reaching the benefits of inclusion are:
- Spreading awareness about Neurodiversity
- Focus the impact measurement of such initiatives towards enjoyment &
therapeutic outcomes instead of educational outcomes
- Expansion of the initiative's scope to accommodate other conditions
requiring customised experiences
- Inclusion initiatives in public places can begin with bringing in enablers such
as sign language interpreters, Braille, signages, etc.
- Design similar initiatives for adults with neurodiverse needs.
- Public places could curate events that are neurodiverse-friendly like film
screening and drum jamming & opportunities to showcase their talents
regularly.
- Introducing a dedicated space to build sensitivity and celebrate diversity.

Acknowledgements: Project Svaritha is a flagship inclusion

project of the Indian Music Experience Museum in partnership
with ReReeti Foundation and Svarakshema Foundation. Funded
by Kotak Mahindra investments Limited CSR Education &
Livelihood Grant in FY 2021-22.

Project Team: Rachel (Tiggy) Allen, Mrs Sonal Raja, Dr Adity

Gudi, Ar. Shivani Shah, Dr Sowmya Sanak, Ms. K. Nitya
Devayya, Ms. Sookthi Kav, Ms. Ayadi Mishra, Ms. Varsha
Anand.

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 INCLUDE 2022. Unheard Voices
11th Inclusive Design Conference
Helen Hamlyn Centre for Design
Royal College of Art London, UK
22-23 September, 2022

Feeling Seen and Heard

Exploring the lived experiences of art students with
dyspraxia through experiential workshop participation. An
evaluation of the advantages of flexible modes of
engagement

Emily ÖHLUND*
Royal College of Art

This paper discusses the benefits of workshop participation as inclusive

research practice. The workshop reviewed was designed to explore the lived
experiences of art students with dyspraxia in a collaborative and mutually
beneficial manner; aiming to create a space for students to discuss the different
aspects of dyspraxia; including etymology, existing research and impact on
higher art education. It provided an opportunity for students to ask questions
and access information as well as explore new practices, share experiences,
and collectively strategise.
The workshop contained information sessions; practical workshops, forum
debates, guest speakers, reflexive practice and discussions, providing the
group with a reflective space to engage in stimulating debate. Feedback
revealed that with peer support, the workshop delivered an opportunity to
process concerns surrounding diagnosis and experiences of dyspraxia.
Feedback and discussion demonstrated the benefits of guided group
workshop, together with continuous dialogue, as a framework to provide
support in both the creation and dissemination of support strategies. The
inherently empathetic group dynamic enabled students to confidently and
critically respond to discourses surrounding neurodivergence. Indeed,
numerous students remarked feeling empowered through the collective voice,
where they would previously have remained reticent, feeling unable to
contribute and their opinions gone unheard.

Keywords: neurodiversity; dyspraxia; neurodivergent art students;

neurodivergence in higher education

* Contact: Emily Öhlund | e-mail: [Link]@[Link]

49
EMILY ÖHLUND

Synopsis of research
The intention of this workshop was to investigate, without expectation, the potential
of workshop participation for exploring the lived experiences of art students with
dyspraxia. This paper is an account of that workshop, which took place in 2017.
Due to word count considerations this paper will limit details to sessions where the
author led activities. It involved MA art students across the RCA with dyspraxia,
while remaining inclusive for students without dyspraxia interested in neurodiversity.
The workshop took place over five days, consisting of a series of activities and
sessions primarily led by Emily Öhlund. Selected sessions ran in unison with or
independently by Antje Illner and Alison Mercer.
Because the workshop was inclusive for students with or without dyspraxia, this
resulted in students attending who suspected they were dyspraxic but had not
sought diagnosis. It became clear during discussions, that one of the principal
reasons for this decision was a fundamental disagreement with the deficit model
and labeling paradigm. Nevertheless, the students were struggling with the same
challenges as those with a diagnosis and were attracted to the workshop as a
means of support.
Together, the group explored and interrogated narratives surrounding
neurodivergence. Through collaborative participatory workshop activities and
discussion, the students considered and recontextualised shared experiences of
being dyspraxic students. The act of sharing enabled the group to create an open
forum for constructive dialogue and exploratory practice, facilitating discussion
around common issues and encouraging the development of strategies to benefit
their creative practice. Their active participation in the research process reinforced
their agency in designing their own support systems and strengthening confidence
in self-sufficiency.

Figure 1. Workshop activity

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Introduction
Research suggests students with dyspraxia commonly experience anxiety, stress
and self-confidence concerns, (Skinner & Piek, 2001; Pearsall-Jones, J et al., 2011;
Waszczuk et al., 2016; Yao-Chuen, 2017; Blank, 2019) especially in higher
education (Öhlund, 2017, 2018; Riddell et al., 2005, Pearsall-Jones et al., 2011,
Williams et al., 2015; Penketh, 2007). The diagnosis of dyspraxia can be confusing
(Gibbs et al., 2007) and students do not always seek diagnosis or the support that
they are entitled to (Riddell et al., 2005) – support that they need to cope with the
demands of their studies (Penketh, 2007; Penketh, 2011; Öhlund, 2018; Rankin,
2020). Subsequently they may go through their degree programmes without
implementing support strategies or making tutors and peers aware.
Existing research investigating dyspraxic experience is typically interview-based,
predominantly relying on the individual’s ability to timely answer questions, giving
paramount significance to spoken language as a means of communication
(Williams et al., 2015). Dyspraxic individuals typically struggle with auditory
processing and structuring thoughts in order to verbally communicate them (Kirby,
2011; Carey, 2014; Williams, 2015; Sartori et al., 2020) therefore this approach has
limitations and used alone may fail to provide a true reflection of the individual and
their experiences (Roy, 2013). Greater consideration should be given to the nature
of dyspraxia as a processing difficulty when designing research methods,
recognising that processing time varies and providing adaptable modes of
engagement in order to meet the needs of the interviewee.
Recent studies have explored dyspraxia within art higher education incorporating
other communication methods, such as engaging with materials and drawing
(Öhlund, 2017; Rankin, 2017; Riley, 2018; Rankin, 2020) in order support
participants to recognise and elucidate their processes during interviews.
Nevertheless, further scope remains for researchers to provide dyspraxic art
students with the opportunity and means to design their own research methods and
support tools by involving them as collaborators in the research process. Such
participatory frameworks enable dyspraxic students to design their own solutions for
the difficulties that they face, examples of which can be found in existing
neurodivergent collaborative-design research (Guhu, 2008; Francis, 2009; Gaudion
et al., 2015).

Aims and Objectives

The aim in designing the workshop was to create a space early on in the student’s
Master’s degree, to discuss the different aspects of dyspraxia; including etymology,
current research, impact on art higher education and the arts. It was an opportunity
for students to ask questions and access information as well as explore new
practices, share experiences, feel seen and heard and collectively strategise. It was
exploratory in nature, with the intention of unpacking aspects of dyspraxia together
with dyspraxic students. The principal researcher, Emily Öhlund, also dyspraxic,
was an empathetic guide who understood first-hand the struggles being
experienced. Öhlund’s PhD research (Öhlund, 2017) also explores experiences of
dyspraxia in higher art education, which informed the design of the workshop.
The workshop trialed the notion of a physical space for students to address issues
regarding their diagnosis with peers and become a part of creating solutions and
strategies to support themselves and their fellow students. Over the course of the
week, the students established a supportive peer network and subsequent
feedback suggested the network remained in place throughout their MA
programmes.

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Ethics
The RCA ethics committee granted ethics approval and information sheets and
consent forms were sent out ahead of time and signed on the day. Students were
asked ahead of time if they required any particular set up during the workshop or
seating situation. The group were asked again if they felt comfortable in the space
on the first day and ongoing adjustments were made including moving blinds;
swapping seating, adjusting volume and brightness on films and presentations.
The Adult Dyspraxia Checklist (Kirby, 2008) questionnaire was filled out ahead of
time, helping to establish where students struggled most, helping shape the focus
of the information sessions and discussions. Material such as films, journal articles
and books that informed struggles was provided and discussion would arise out of
response to these. At no point were questions put directly to students. Forum
sessions, guest speakers, literature or workshop activities resulted in questions
from the students, which developed into discussion, during which students chose to
share opinions and experiences. The researcher ensured that conversation was
constructive, positive and respectful in character. Students were made aware of
support available to them if they were affected by anything in the workshop. This
was reiterated in writing in the consent form and email correspondence before and
after the workshop. It was made clear that they could leave the workshop at any
time and withdraw consent without providing a reason.

Methodology
Figure 2 illustrates the three modes of engagement contained within the workshop
series; creative practice, information exchange and discussion. Within those key
modes were information sessions, open forum debates, guest speakers, readings,
practical activities, and opportunities for reflection and discussion. Figure 3 details
the workshop activities, demonstrating the range and sequence. 27 students took
part; 8 students with a diagnosis of dyspraxia, 9 non-dyspraxic students, and 10
students who suspected that they were dyspraxic and were debating the diagnosis
route. The group was given the autonomy to move their work in any direction that
they wanted during the week. Opportunity was given for students to suggest
workshop themes in advance, with additional opportunities throughout the week to
propose directions to move the group. The preliminary responses involved
concerns regarding memory and sensory distraction, hence these were central
themes.
During Tuesday’s activities investigating sensory perception the group expressed a
desire to find a ‘tool’ to manage sensory overload and mindfulness jars were
mentioned. Mindfulness jars were written into the schedule for the following day and
students brought jars from home to complete the activity. Remaining flexible and
adjusting the program to include the group’s wishes was integral to the workshop’s
objective as an inclusive means of exploration and thereby ensuring the positive
experience of its participants.

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Creative
Practice

Discussion Information
Exchange

Figure 2. Diagram demonstrating the 3 modes of workshop engagement

The flexible configuration of the workshop gave a framework for the students to
engage with in diverse ways. They connected with one another in the common
ground of that space and the researchers who led the workshop guided the
student’s development by being present to answer questions, supporting their
development if they struggled to connect with the task, and ensuring that the
discussions were constructive, encouraging and positive.
If a situation arose where a student felt frustrated, workshop leaders used the
concern as an opportunity to engage in critical thinking; addressing the challenge
and unpacking the issue together, working towards deeper understanding and then
resolution. An example of this occurred during the reimagining sketchbook activity,
when a student felt would not benefit them. The activity leader Alison Mercer
deconstructed the activity and the group challenged the idea of thinking as a linear
process, reflected in a traditional sketchbook, considering instead the potential
benefits of an alternative tool that reflected the dynamic way that neurodivergent
people may think. The student felt reassured by the discussion and progressed with
the task enthusiastically.
The interchange between the three modes provided the group with a reflexive cycle
of activity which informed, nourished and supported one another; information
sessions were followed by discussion, which were followed by opportunities to
respond through creative practice which were considered through further group
discussion and so on.

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Figure 3. Workshop schedule.

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Practical tasks were used to apply and contextualise themes such as visual
memory and sensory overload, grounding notions in their real-life consequence
(Pink, 2015). These served as talking points and catalysts for discussion and
strategising. The memory task in Figure 4 required the students to rapidly sketch a
series of images projected on the wall for 2 minutes. Through the repetition of this
activity, various strategies for supporting visual memory emerged. Afterwards the
students reviewed the challenge, how they found ways around it and shared their
strategies. These included abstraction; imaginative adaptation, synthesis and
leaving memory markers to trigger recollection once the projection was gone.

Figure 4. Students’ sketches of projected images during visual memory exercise

Another workshop task was to create a mindfulness jar; a popular tool to help
manage sensory overload involving a bottle containing gelatinous liquid with small
particles or glitter floating inside. When shaken vigorously and placed on a surface,
the swirling particles gradually settle down. Watching this process absorbedly helps
to regain focus and settle the senses.
Creating these bottles took time and the theme prompted discussion around
sensory challenges and other strategies to manage stressful environments or
situations. While the end result was a physical tool to support the issue, the process
of group making acted as a conduit to discussion.

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Figure 5. Student shaking mindfulness jar

Figure 6. Students discussing sensory overload while making mindfulness jars

An objective of the workshop was to give the students continuous access to

practical forms of expression so that they had a variety of ways to process their
thoughts, express themselves and record experiences and ideas. A wide range of
practical materials was available for use at all times. The material outcomes that
were subsequently created provide additional insight into the attitudes and
interpretations regarding the subjects being discussed and the experiences

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EMILY ÖHLUND

connected with them (Biggs & Karlsson, 2011). For example, the student, whose
model is seen in Figure 7, described the anxiety of trying to organising her thoughts
with humour, laughing while describing it as ‘feeling crushed by her giant chaotic
brain’.

Figure 7. Students’ sculptural representation of being overwhelmed by disorganised thoughts

Difficulty processing auditory information and organising thoughts makes it

problematic to verbally articulate concepts rapidly in discussion situations and can
generate anxiety, making the whole process increasingly stressful. The availability
of a variety of expressive techniques, including systems of enactment such as
model making (Figure 7) (Allen et al., 2014), and tablecloth-notes (Figure 8),
created inclusive participatory options which supported the student’s ability and
confidence to contribute. Objects took on conceptual and metaphorical significance,
embodying hard-to-express feelings. These objects were used as prompts during
discussions to aid remembering and illustrate notions hard to explain with language
alone.

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Figure 8. Student’s tablecloth-notes during discussion.

The paper tablecloths gave the students a tangible place to rapidly write down their
thoughts or note questions so as not to forget them before the opportunity came to
ask. Over the five days these notes began to form a ‘conceptual blueprint’ of the
week, consisting of markers illustrating key moments of interest (Figure 9). The
students valued these ‘blueprints’, and cut them out to keep at the end of the
workshop.

Figure 9. Student’s tablecloth notes throughout the week

Because they were visually accessible, they became a point of reference, students
continuing to reflect on and add to them, responding to themes through creative
practice (Figures 10 and 11).

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Figures 10 & 11. Student’s notes and sketches during discussion. Student’s model exploring themes
of neurodivergence, continuing on from notes

Research has linked physical engagement in a task with increased ability to focus
(Allen, 2014). Therefore, students were encouraged to engage with material whilst
listening to guest speakers and information sessions.

Figure 12. Student’s model portraying neurons, created while listening to guest speaker,
neuroscientist Janet Eyre.

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The students used material interaction to help process what they were listening to
during information sessions and group discussions. The act of playing with,
enacting or physicalising the information helped to process and retain the new
knowledge (Winnicot, 2005; Allen et al., 2014; Carey, 2014).

Figure 13. Student painting while listening to guest speaker Cara George discuss her experiences as
a dyspraxic jeweller.

Through participatory group research, students critically interrogated theories and

attitudes surrounding neurodivergence, comparing these against their own
experiences. The intersecting activities informed one another and through
collectively reflecting on daily experiences they encouraged each other’s
development.

Findings and outcomes

Feedback from the participants revealed that they benefited from the support of
their peers, whilst the workshop gave them an opportunity to process concerns
surrounding diagnosis and their experiences of dyspraxia, accessing information
which they would otherwise not known how to locate. They also benefitted from
being able to challenge notions that they disagreed with, working through concerns
together in order to better understand them was essential to resolving them:

Before the workshop I had to live with high levels of guilt and self-
hatred that I was so lazy or so stupid I couldn't even get menial
tasks done. Someone said, 'If you have dyspraxia, you will quite
often find yourself being described by others as lazy.' And that is
exactly what was happening to me at the time. I was working so
hard — to the point it was detrimental to my health, yet still being
described as lazy and unprofessional by my tutor. Now it's great
because I understand it's just about strategising ways around it. On
reflection, the most important aspect was people sharing their
experiences of dyspraxia, and realising you're not alone

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They found sharing and listening to others helped them to positively revisit and
recontextualise their negative experiences. The realisation that these were shared
experiences validated their struggles and gave rise to a sense of relief:

It was such a relief to find out that other people experienced similar
things to me
The group experience created a supportive network of students, some of which
remained in place throughout their time at the university. A common remark in
feedback was finally “feeling seen and heard”, an experience which they struggled
to achieve elsewhere and after which they felt better prepared to move forward with
confidence in their MA studies. This feeling of being listening to and understood
was enriched by the realisation of shared experiences.

I have rarely learnt so much about myself in such a short space of

time or been around that many people with such a high level of
empathy on the subject... perhaps due to our shared experiences

Figure 14. Collective strategies developed during the week

This mutual understanding was particularly apparent in their accounts of their

sensory experience within studio environments, which was significantly impactful,
yet other students and even tutors were completely unaware. Finding ways to
maintain focus was especially important to them. This issue was addressed during
the discussions and the group shared and created strategies to help adapt the
studio environment:

Beginning an important venture threw up a few concerns with

regards to certain areas I struggle with. It was great to have a space
in which I could reflect on these concerns, look at coping strategies
and talk with other people facing similar struggles. Before the
workshop my studio space at the college had been left unused,
since the workshop I still find elements of working in the space
difficult but went straight to work in attending to these difficulties
and succeeded in creating work within the studio I could not have
done at home. Fellow students have commented on the difference
they have noticed

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A significant outcome was the emergence of an attitude of reluctance to pursue the

diagnosis route by students who suspected that they are dyspraxic but who were
evidently struggling. Objections suggested that one possible implication of the
deficit model remaining at the core of diagnosis culture, is a reluctance to partake in
diagnosis altogether for fear of pejorative labelling, even at the expense of
wellbeing. This dilemma indicates the need for advancement promoting positive
attitudes surrounding neurodivergence, including progressing language and
attitudes.
Another notable outcome was the diverse range and creativity of self-designed
coping strategies presented by the students, once given a range of ways to express
themselves. In the visual memory task alone, they displayed compensatory
techniques involving the abstraction of visual elements, imaginative elaboration,
placing memory markers and the synthesis of visual information.

Significance and implications of study

The evidence from this study suggests participatory workshops involving these
three modes of engagement has potential advantages as an inclusive research
structure, benefitting both participant and researcher. It also highlights the potential
of guided group peer support as a method of early intervention together with forum
discussion for the generation and dissemination of support strategies. Dyspraxic
students who struggled to articulate themselves and their difficulties, felt able to do
so in this situation with the help and support of their peers and a variety of methods
on offer. Sharing experiences with their fellow students allowed them to empathise
with, truly hear and even advocate for one another when communication faltered.
This group dynamic thus enabled the students to critically respond to theories and
attitudes surrounding neurodivergence and find empowerment in their collective
voice.

Figure 15. Workshop space

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EMILY ÖHLUND

Processing information and emotional responses can take longer for a person with
dyspraxia (Delgado-Lobete, 2020) and so having an open channel of discussion for
a number of days with the option to revisit themes at any point was a fundamental
component in ensuring the inclusivity of the workshop. Including a channel of
communication, such as emailing the researcher for additional information, helped
allay anxieties that they would run out of time to voice their opinions. These options
were utilised by the students when thoughts came to them days or weeks after the
workshop.
This workshop investigated the benefits of allowing students with dyspraxia to
address their experience through a range of intersecting exploratory activities. It
illustrates how those provisions affected their ability to engage with the subject in a
meaningful and valuable way. The fruitful nature of the workshop was underpinned
by the textural nature of the methodology, which provided numerous inclusive
options for expression and engagement. The understanding and support that they
found in the group gave rise to a renewed sense of self-efficacy and they left the
workshop feeling empowered to address struggles, create solutions and implement
constructive changes themselves.

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CORREIA DE BARROS, COUTO DA SILVA, RAMADANI and MENDES SANTOS

Track 2. Humanising Healthcare

Design for Healing and Recovery from Eating Disorders: p.71

A multidimensional design model
Silvia NERETTI

Humanization in Oncological Health Services: p.81

A Brazilian case study
Patricia Raquel BOHN, Emanuele KÖNIG and Cláudia de Souza LIBÂNIO

Empowering Patientship p.90

Exploring the conceptions of patient-centeredness via definitions
and cases
Miso KIM, Michael Arnold MAGES, Stefano MAFFEI, Paolo
CIUCCARELLI, Beatrice VILLARI and Massimo BIANCHINI

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11th Inclusive Design Conference
Helen Hamlyn Centre for Design
Royal College of Art London, UK
22-23 September, 2022

Design for Healing and Recovery

from Eating Disorders
A multidimensional design model

Silvia NERETTI*
The Design School, Arizona State University

The paper presents a multidimensional, participatory, inclusive, and person-

centered model that aims to produce design interventions to support the
recovery process from Eating Disorders. The research is situated within the
emerging field of Design for Mental Health and grounded in a relational
theoretical perspective and methodology. The paper provides a
transdisciplinary review of the literature on designing for health and mental
health, and it provides a historical overview of mental disorders' models and
treatments, highlighting exclusions of factors, narratives, and gaps. The
relational framework affords defining Eating Disorders as multidimensional and
mediated practices, which allows seeing healing as a process with material and
spatial consistencies. The paper introduces the methodology generated to
develop the model: an assemblage of methods organized through a multi-
phase study that produces an inclusive and materially distributed
understanding of EDs and recovery. The first model iteration emerges from the
analysis of in-depth semi-structured interviews with participants who
successfully recovered from Eating Disorders. The paper describes the model
through its actions, elements, layers, and its main aim: to produce pragmatic,
evocative, and unconventional design propositions, tackling the relationships
Eating Disorders are composed of that allow for a new sense of self to emerge
as a new way to negotiate one's life.

Keywords: design for mental health; eating disorders; relational healing;

healing by design; design model

* Contact: Silvia Neretti | e-mail: sneretti@[Link]

71
SILVIA NERETTI

Design for health and mental health:

context and gaps
This paper is situated in the fields of Design for Behavior Change, Design for
Health, and Mental Health. It focuses on crafting a person-centered, participatory,
and transdisciplinary design model that generates interventions for recovery from
Eating Disorders. This research furthermore wants to contribute to understanding
the role of Design in the emerging field of Design for Mental Health. The following
summarizes the state of the arts of design research in health and mental health.
Design projects and empirical research have been critical components of the health
experience (Chamberlain & Craig, 2017: 3); for example, Design has been utilized
to improve the usability of healthcare-related environments.
Over the past ten years, there has been a paradigm shift toward exploring the
design role in provoking change in healthcare practices (Tsekleves & Cooper,
2017). Design has further been used to explore interventions for specific health
issues (e.g., stroke rehabilitation, diabetes) and in defining approaches and
theories to design for Behavior Change (Niedderer et al., 2017).
A design field dedicated to mental health is emerging but lacking: design
interventions and approaches that could potentially build Design for Mental Health
as a discipline exist; however, cohesive theoretical and practical approaches are
missing. Shepley and Pasha (2017) differentiate between functionally challenging
and cognitively impairing mental disorders. The latter refers to issues such as
dementia (Niedderer et al., 2020), while the former refers to issues such as
depression or Eating Disorders. Few design interventions exist as well in the sphere
of functionally challenging disorders.
Design approached emotions and moods to create an attachment to products or to
improve usability (Norman, 2004), recently expanded into Design for wellbeing and
mood regulation (Desmet and Pohlmeyer, 2013) and to improve therapeutic
communication (Diatta, 2015). Interest is growing around designing for the body
and senses (Höök, 2018; Hendren, 2020; Lipps & Lupton, 2018). Finally, design
research on Eating Disorders and recovery is missing. In this endeavor, we need to
be mindful of the risks of applying design approaches instrumentally to how the
medical paradigm approaches mental health, which would disregard the original
contribution that Design can offer.

Medical models, social theory and exclusion:

contextualizing Eating Disorders
Eating Disorders (EDs) is an umbrella term that refers to the experiences of
Anorexia Nervosa, Bulimia Nervosa, Binge Eating, and Eating Disorders Not
Otherwise Specified (EDNOS). EDs are considered non-biological and
multifactorial. For example, factors contributing to EDs insurgence comprehend
individual, familial, socio-cultural, economic, and environmental ones. These factors
can emerge differently in different individuals, so generalizing these disorders'
etiology becomes cumbersome (Polivy & Herman, 2002). The model that takes
care of EDs is the biomedical one, which compares mental disorders to bodily
diseases (Bracken et al., 2012). The Diagnostic Statistical Manual for Mental
Disorders (APA, 2013; 329), for example, defines EDs through factors focused on
the individuals' bodily boundaries, eating practices, emotions, and consequences,
excluding factors outside individuals' boundaries.

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 Design for Healing and Recovery from Eating Disorders: A multidimensional design model

To understand the reason for this approach, one can look into how the medical
practice and the treatment of mental illness historically emerged (Foucault, 2003).
The Cartesian dualism between mind and body, and the latter's subordination to the
former, rendered bodies available for observation and treatments and allowed the
medical practice to emerge. Patients were grouped into hospitals regardless of their
issues (physical or mental); therefore, treating mental illness as a physical condition
was considered appropriate. In that context, patients' narratives have been
silenced. The biomedical model operates through the reduction of factors to
observe: this affords higher comparability between types of treatments and allows a
better understanding of treatments efficacy (Valentine et al., 2017).
This approach, however, excludes other factors around mental disorders and
recovery: e.g., patients' narratives, ways to conceptualize the body, the influences
of culture and the socio-material environment, and the concept of recovery. Even
though the biomedical model has later evolved into the Biopsychosocial model
(George & Engel, 1980), extra-personal factors are still left behind. Eating Disorders
can be read through a social lens: according to Bordo (Ruberg, 2020), Wolf (2015),
and String (2019), the idea of the thin body, dieting, and fatphobia, are distracting
practices, socially fabricated, and grounded in white supremacy, through which
reproduce and maintain class, gender, racial oppression.
Lester (2019) considers Eating Disorders as Technologies of the Self (Foucault et
al. 1998), defined as socially and culturally produced practices that individuals
embody. When referring to EDs, Lester invites us to consider individuals "carrying
the symptom of larger systemic issues" (84). Treatments for Eating Disorders rarely
address the systems that produce them. They focus on allowing the individual to
function within them. EDs treatments are developed without including the concept
of recovery, which does not have a commonly agreed definition or process (Björk &
Ahlstrom 2008). According to the sociologist Garrett (1997), recovery stories usually
appear in narrative forms and are excluded from treatment conceptualization
because, as narratives, they "resist measurements" (263). However, patients' lived
experiences have been collected through qualitative lenses: these studies show the
importance of integrating narratives into the Design of treatments for EDs (Bardone-
Cone et al., 2018). For example, Malson et al. (2011) describes the difficulty for
EDs patients to imagine a future healed self. Eating Disorders have been defined
as a stubborn condition to treat, but models and treatments have rarely changed.
Psychiatrists Fassino & Abbate-Daga (2013:1) define EDs as "examples of both
crisis of psychiatry and its moderate effectiveness, with reductionist approaches
playing a role in this regard." They suggest the need for complex models to look
into these disorders.

A relational approach to Eating Disorders: theoretical

framework and methodology
To develop a comprehensive model to design for recovery from EDs, we need a
theoretical tool that allows us to describe EDs and recovery as multidimensional
and distributed phenomena. This research uses a relational perspective, which
describes phenomena through their relationships, considering the elements they
produce and are composed of, including human and non-human ones. For
example, a social media post, a mother, a fridge, and the practice of bullying should
all be considered in terms of their relationships and which role they play in one's
EDs. This perspective prevents us from investigating phenomena from one singular
point of view (individual or structural) (Latour, 2005) and from understanding the
body, the self, and healing as relational and woven in socio-material environments.

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The self can be seen as an "unfolding network of relations between biological,

psychological, social and environmental structures" (Heersmink 2020: 7; Wallace
2019). Healing can be considered as the capacity of one's body to create new
relationships (Deleuze in Ruberg, 2020). Conradson (2005) describes how healing
relationships and experiences are composed of spatial and material consistencies,
which allow new dimensions of selfhood to emerge. Recovery approaches by
Design should focus on tackling relations that benefit from one's disconnection with
oneself, body, and emotions while crafting new relationships to allow a safely
embodied sense of self to emerge. The researcher, therefore, developed a
methodological assemblage (Law, 2004): various methods, organized in a
multiphase study, that allow describing EDs and recovery experiences from
different points of view. The methods range from:

1. Collecting lived experiences of EDs survivors, their support networks, and

professionals;

2. Investigating the role of the material environment during recovery via

ethnographies;

3. Experimenting with imagination to design for healing;

4. Testing the model via ethnographies and probes.

What follows elaborates on the findings of in-depth, semi-structured interviews with

participants who have experienced Eating Disorders in the past but identify as
recovered for not less than one year (Bachner-Melman et al., 2018). The interview
questions addressed people's changing relationships with themselves, their bodies,
food, and environments during the healing process.
The method followed ethical guidelines for research in sensitive settings to protect
participants' safety and privacy (Liamputtong, 2007). The researcher, for example,
chose to work with memories rather than active EDs' experiences and developed a
distress protocol to use during interviews to minimize emotional distress.
Participants were able to choose pseudonyms when requested. Furthermore, the
method followed the concept of saturation: once recurrent themes emerged from
interviews, the researcher stopped the recruitment process to minimize harm
(Mason, 2010). The researcher collected 14 interviews. Participation was voluntary
and compensated with a gift card of participants' choice. The interviews were
implemented through Zoom, following guidelines for COVID-19. Interviews have
been recorded, transcribed, and analyzed following a thematic analysis approach,
which produced the model's first iteration.

Eating Disorders and Recovery: analysis toward a

model
EDs have been described as displacement and coping mechanisms (Bruch, 1973):
participants' disconnection from their emotional selves and bodies serves the
purpose of detaching from EDs' underlying issues and their unsafe or misattuned
socio-material environment. EDs allow absenting (Lester, 2019) from memories of
trauma, neglect, and abuse experienced during childhood, as mentioned by
participants. Contributing factors to EDs start somewhere else, resonate with
participants, and are re-directed toward one's body, which is made up as a problem
and solution, becoming a project in need of constant maintenance, toward the

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 Design for Healing and Recovery from Eating Disorders: A multidimensional design model

pursuit of unreachable thinness. Self-objectification, body dysmorphia, eating, non-

eating and exercising afford numbing and detachment, and a precarious sense of
being in control of one's environment. Almost all participants mentioned being
subjects of body and eating shaming.
If we zoom closer, participants mentioned being part of environments (schools,
sports, and familial ones) in which competitiveness, expectations, and perfectionism
are at the center of interactions, perceived as transactional goals to self-worth and
love. These environments often do not offer spaces to explore one's authenticity
and agency, negotiated through withhold and release of control. The material
environment enables EDs practices: social media posts, magazines, books, mirrors,
clothes, scales, apps, and foodstuff are the most commonly mentioned.
Participants describe their recovery as an assemblage of decisions, actions,
coincidences, people, places, matter, and metaphors, bottom-up and top-down
approaches, sharing a similar effect: participants grow around their EDs (Tonkin,
1996). Recovery feels foreign and imposed at first, but the effort of pulling away
from one's EDs carves a space to explore authenticity. One participant, for
example, describes the sense of discomfort while learning new coping mechanisms
substituting her EDs, as a way to negotiate everyday life. Participants' various
recovery processes have been visually organized to highlight similarities and
connections: recovery involves practical actions, learning, reflecting, and imagining.
Participants remember their recovery starting point as either a moment in time or as
an evolving process, which entails emotional maturity and readiness. Recovery is
something that happens or is sought: from an unexpected event (e.g., a physical
illness that jeopardizes the practice of disordered eating) to participants seeking
help over losing control over exhausting dieting practices.
Practical actions often follow the beginning of recovery. They are linked to one's
survival, require immediacy, are context-related, and focus on setting boundaries
with oneself and others. Participants mention giving up the practice of body
checking by removing scales and mirrors. One participant set boundaries with her
family, asking them to stop commenting on physical appearances. These actions
are implemented alone or with the help of therapists, friends, and loved ones.
Learning refers to adopting, e.g., new behaviors, coping mechanisms, and
perspectives to help anchor oneself out of an ED. Learning happens slowly,
imperfectly, and requires practice. Learning is mediated but independent of a
context. Concepts can be learned top-down or bottom-up; for example, participants
describe their need to re-learn how to eat by listening to their body's hunger and
satiety cues, or they mention the concept of mindful eating, learned in therapeutic
settings.
Once one steps into a recovery mindset, the entire socio-material environment that
once maintained EDs transforms into a living metaphor that supports one's
recovery journey. One participant, for example, explains how picking up gardening
taught him to see his body as an organism to cultivate rather than control. Exploring
new activities or looking for metaphors in one's everyday life are actions
instrumentally used for self-exploration. This phase becomes a life-long pursuit,
actively sought and self-initiated until it becomes a new lens through which one
sees oneself. Reflection and incorporation can happen at any moment: they require
effort, a specific dedicated time, and purposeful cultivation (e.g., journaling).

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A Design model for relational and material healing

from Eating Disorders
The model developed from the interviews' analysis is composed of:
1. Actions: five non-linear phases toward crafting a new sense of self.
Seciding; 2. Doing and Undoing; 3. Learning; 4. Imagining; 5. Reflecting and
Incorporating, toward becoming.
2. Elements: human and non-human actors involved in the recovery process,
such as 1. People (e.g., professionals, support networks, strangers'
influences, and pets) 2. Tools and environments (removing, changing,
adding); 3. Practices (material or conceptual that provide structure or
distraction).
3. Layers: design interventions are focused on relationships between
intrapersonal, interpersonal socio-cultural levels.
4. Concepts: the model should generate new reframing of one's experience
with EDs and suggest propositions toward recovery; here are a few
examples: how does food teach us to inhabit our bodies safely? How does
one develop tools to learn interoceptive and proprioceptive awareness?
How does one materialize fictional provisional selves?
The remaining part of the paper describes "1. Actions" to explain the model's
functioning.

Actions

Figure 1. Actions Scheme; The five phases are displayed within a quadrant

The five phases described should serve as a guide to conceptualizing recovery

design interventions that match one's current state of the disorder. Existing
approaches in Design for Behavior Change, inform the interventions (Niedderer et
al., 2017).
The model, for example, shares similarities with the Practice-Oriented Design
approach described by Kujer (Niedderer et al., 2017): practices should be analyzed
considering the elements that compose them, and interventions should focus on
their reconfiguration. The model is also informed by the concept of Script and its
translation into material form, as described by Latour (2005).

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 Design for Healing and Recovery from Eating Disorders: A multidimensional design model

Designing recovery interventions should consider spontaneous bottom-up and top-

down approaches informed by theoretical underpinning, as collected from the
research methods. Each of these recovery approaches should be analyzed in a
distributed manner to extrapolate aims, elements (humans and non-humans), and
levels involved. The findings of this analysis should be translated into a script and
into matter: tools, props, and contextual changes or disruptions should promote
behavior change, mediate interactions and connections, and inspire new ways of
being outside one's EDs.

1. Deciding

Figure 2. "Deciding" scheme

The scheme depicts four recovery starting points: one circle on the left,
representing the Eating Disordered self, connects with different configurations of
circles on the right. Recovery starting points are negotiated between agency and
environment (Clarke, 2009), where someone's agency takes over one's
environment, where agency and environment support each other, or where the
environment takes over one's agency and forces the recovery process. One
participant described her recovery starting point as a combination of events: a fight
with a friend, loneliness, frustrations towards her life choices, and Oreos as the only
form of comfort, carefully afforded the participant to lose control over her rigid
dieting plan, allowed her to question the efficacy of her EDs, and to take distance
from family's influences around dieting. This recovery process, for example, is a
negotiation between environment and agency and touches on three different layers
(one's relationship with food and the self, with family and friends, and with fatphobic
cultural influences). A design intervention could provoke a careful loss of trust in
one's EDs efficacy, mediated by food, relationships, and the environment, by
tweaking contextual affordances and reconfiguring actions.

2. Doing and undoing

This phase follows the beginning of one's recovery process, enabling or
constraining specific actions, and setting physical and emotional boundaries to
allow a different engagement with one's environment. Actions are tight to one
context and have immediacy qualities. Participants, for example, mention stepping
away from the environment and interactions centered on the thin or athletic body
and removing tools (mirrors, scales, clothes, fitness apps) that maintain one's EDs
practices. Design intervention can focus on a collaborative effort in reconfiguring

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environment engagement or disrupting the objects' function that supports EDs

practices.

3. Learning
This phase focuses on acquiring skills around eating, listening, and re-inhabiting
one's body, getting to know one's emotions and equivalent coping skills. These
skills can come from medical, therapeutic, and non-therapeutic relationships.
Design interventions could focus on extrapolating the program of action of
theoretical or practical skills (e.g., feeling one's emotions) and inscribing them into
props for practicing. These props should be designed considering the necessity of
creating proper spaces, times, and easiness for repetition. These props can be
developed in collaboration with the participants' therapists or support networks.

4. Imagining
This phase refers to an exercise in imagination via Speculative and Fictional Design
approaches: visualizing, inspiring, enacting, experiencing, and exploring activities to
deepen one's understanding until one steps into future, preferred, and healed
selves. Zimmerman (2009), referring to Ibarra's (1999) concept of provisional
selves, explains Design's intrinsic capacities to bring new dimensions of selfhood
through objects. Speculative Design approaches can have healing properties if we
compare them to narrative therapy approaches: narrative therapy operates through
telling and retelling one's story to escape the dominant narrative that influences the
perception of one's life, encouraging the untypical (Payne 2006). Fictional and
Speculative Design materialize propositions that bridge preferred realities (e.g., a
healed one) while allowing a new inquiry of the present (Wakkary et al., 2015).

5. Reflecting and Incorporating

Reflecting and incorporating are less than individual phases described above but
should be included between or at the end of each phase. It refers to the capacity to
recognize one's progress, safely welcome the new, reflect on changes, meaning-
making, and develop new goals.

Conclusions
This exploration is in the process of being completed. The final methods will test the
model's capacity to produce creative, pragmatic, fictional, and evocative design
propositions, allowing a new and healed sense of self to emerge. Design reframing
focuses on "providing alternatives to deeply ingrained ways of thinking" (Koskinen
et al. 2011: 47): in this case, Design can be seen as possessing intrinsic healing
qualities. Healing by Design is a collective effort and focuses on questioning the
various relations that produce mental disorders in the first place. Recovery by
Design has no single focal point but is made of a combination of interventions.

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11th Inclusive Design Conference
Helen Hamlyn Centre for Design
Royal College of Art London, UK
22-23 September, 2022

Humanization in Oncological
Health Services
A Brazilian case study

Patricia Raquel BOHN*

Federal University of Health Sciences of Porto Alegre (UFCSPA)
Emanuele KÖNIG
Federal University of Health Sciences of Porto Alegre (UFCSPA)
Cláudia de Souza LIBÂNIO
Federal University of Health Sciences of Porto Alegre (UFCSPA)

In the health area, the focus of care has historically been on technical issues
aimed at disease or illness treatment, making humanized healthcare,
sometimes, a secondary position. In Brazil, the National Humanization Policy
presents guidelines that guide human practice in the provision of health
services.
Among the services provided by the Unified Health System (SUS) - the
Brazilian public healthcare system - there is the oncology service. In addition
to diagnosis and treatment, the service needs to understand the physical,
cognitive, and emotional vulnerabilities of the cancer patient. In this sense, this
study aims to investigate the aspects that contribute to or hinder humanized
care, according to the patients' perception of an oncology service.
As a research method, a case study was carried out in an oncology outpatient
clinic of the SUS in a Brazilian hospital. The data was collected through in-
depth interviews with patients.
Through our results, we observed that the factors which contribute to
humanized care are related to human interaction, involving affection, cordiality,
respect, and empathy. The factors that make this perception difficult are
associated with technical communication, bureaucracy related to treatment,
and waiting time for care, which influence the experience, engagement, and
well-being of the patient.

Keywords: humanization; oncology service; service design; healthcare

* Contact: Patricia Raquel Bohn | e-mail: patriciabohn07@[Link]

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Introduction
Humanization in healthcare arises from the need for a holistic approach to illness
and has been a concern in the area for years (De la Fuente-Martos et al., 2018).
The concept of health, adopted in this study, is defined as the complete state of
physical, mental, and social well-being and not merely the absence of disease or
infirmity (WHO, 1948). From this perspective, we believe that humanization in
health is a crucial pillar to generating successful experiences, not limiting health
care to merely technical-scientific issues and disconnected from ethical and human
knowledge. This is because making care humanized is to reveal the values that
constitute the human being as a person in a comprehensive and complete way
(Pessini, 2004).
In the health area, the focus of care has historically been on technical issues aimed
at disease or illness treatment, making humanized healthcare, sometimes, a
secondary position. Todres, Galvin, and Dahlberg (2007) state that although
technological advances and research have improved the health and well-being of
patients, the human dimensions of care cannot be obscured.
Humanization is defined by some authors as an experiential process that
permeates all the activity of the place and the people who work there, seeking not
only to perform the technique but also to offer the patient the treatment deserved as
a human being, within the peculiar circumstances, in which they find themselves at
each moment in the health service (Carvalho, Paula & Moraes, 2007). Others argue
that humanizing entails centralizing all health policies and actions that occur
throughout the human being (Whits, 1985). In turn, Youngson and Blennerhassett
(2016) define the humanization of healthcare as a state of well-being, involving
affection, dedication, and respect for the other, considering the person as complete
and complex. This humanized context generates experiences loaded with emotions
that, if positive, tend to favor a person's organic rebalancing, affecting the immune
system and helping in the healing process (Sternberg, 2009).
Considering this perspective, in Brazil, it was created the National Program for the
Humanization of Assistance Hospitals (NPHAH), whose objective is to improve the
relationships between professionals and users of the health service, and among
professionals, the hospital, and the community, to change the standard of care
provided and provide improvement in quality and effectiveness of health services
(Brazil, 2001). In the program, humanization in health aims at rescuing respect for
human life, taking into account the social, ethical, educational, and psychological
circumstances present in every human relationship.
To reinforce human practice in the provision of health services, in 2003 Brazil
established the National Humanization Policy (NHP), popularly known as
HumanizaSUS, seeking to put into practice the principles of the Unified Health
System (SUS) - the Brazilian public healthcare system - aimed at full access,
universal and equitable-in the daily life of health services, producing changes in the
ways of managing and caring (Brazil, 2004). For this, principles were established
aimed at the transversality, the inseparability between care and management, and
the protagonism, co-responsibility, and autonomy of subjects and groups. In
addition to establishing guidelines based on reception, participatory management
and co-management, ambience, expanded and shared clinic, appreciation of the
worker, and defense of users' rights among others (Brazil, 2004).
The established principles and guidelines aim to act on different factors contributing
to health services' humanization as: welcoming; patient appreciation and attention
to global needs; establishment of good relationships; good communication; active

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listening, and creation of bonds with the patient and his/her family; respect for the
patient's individuality, autonomy, and particularities; spiritual needs and faith;
qualification of professionals; periodic team meetings; protection of patient rights;
development of recreational activities; and improvement of infrastructure in the
hospital environment (Anacleto, Cecchetto & Riegel, 2020).
In this sense, humanization requires a reflective process on the values and
principles that guide professional practice, in addition to providing treatment and
care with dignity, solidarity, and warmth to its primary objective—the fragile patient.
This approach aligns with service design where the project contemplates the entire
service experience, as well as the design of the process and the strategy to deliver
it (Moritz, 2005).
However, despite the initiative, the scope of SUS in Brazil involves different types of
services and complexities. In addition, according to Waldow and Borges (2011),
care and humanization constitute an activity that deals with the human being in
situations of vulnerability. Furthermore, is important that obstacles in the use of
services are eliminated, so that equitable possibilities are offered to all (Castro et
al., 2011), regardless of physical or cognitive conditions, which makes
humanization in health a constant challenge, given the complexity of the context,
the interaction of users and their needs.
Among the services provided by SUS is the oncology service. In addition to
diagnosis and treatment, the service needs to understand the physical, cognitive,
and emotional vulnerabilities of the cancer patient. This is because oncological
patients face barriers caused by the pathology or treatments, such as a prolonged
course of the disease, other health complications, disabilities (AIHW, 2020),
psychological suffering (Verhaak et al., 2005), and impact on the quality of life
(Phillips & Currow, 2010). Thus, oncological care means complex care, since it
involves multiple factors (Costa, Filho & Soares, 2003; Simões et al., 2021). For this
reason, patients diagnosed with cancer should be treated, not merely as another
cancer case, but they need to be attended to from a holistic, multidisciplinary, and
humanized perspective (Costa, Lunardi Filho & Soares, 2003; Carayon &
Wooldridge, 2020).
Although it is noted and recognized the importance of humanized assistance, we
know that not all services and their respective professionals recognize and use it in
the exercise of their profession (Silva et al., 2018). So, several barriers undermine
fair and equitable access to health services as architectural/physical aspects
(Santos et al., 2012; Geraldo & Andrade, 2022), technological aspects (Carayon,
Hundt & Hoonakker, 2019; Geraldo & Andrade, 2022), attitudinal aspects (Hashemi
et al., 2022), and informational/communicational aspects (Geraldo & Andrade,
2022). Thus, it should be important to understand this scenario in order to structure
a line of care that contributes to humanized care, influencing patients' experience,
engagement, and well-being. In this context, design plays a critical role in delivering
healthcare and generating better experiences for patients (Swann, 2017).
Therefore, this study aims to investigate the aspects that contribute to or hinder
humanized care according to the patients' perception of an oncology service.

Methodology
This research followed an exploratory approach. We carried out in-depth interviews
with six patients in an out-patient oncological service of a Brazilian hospital. The
sample was determined by convenience and data saturation was observed in order
to stop the interviews. A protocol with semi-structured question scripts was used to
guide data collection. The data were obtained through primary sources, using a

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direct and personal approach in the interviews. The interviews were recorded,
transcribed and the data were tabulated for further analysis.
For data analysis, thematic analysis was performed (Braun & Clarke, 2014),
considering the aspects of humanization perceived in the data collection from the
interviews.
Regarding research ethics, the study was approved by the UFCSPA’s Institutional
Review Board (CAAE 55467222.5.0000.5345), complying with the Data Protection
Act. The hospital also provided a term of acceptance to carry out the study.

Results and Discussion

In this section, the findings and the discussion of our research are presented.

Aspects that contribute humanized care

In this first section, we present the aspects that contribute to humanized care
according to the perception of patients in an oncology service. From the interviews
carried out with cancer patients, we identified different aspects that contribute to the
humanization of care, which were grouped into two categories: interaction between
health professionals and patients; and protection of users' rights.
Humanization was reported mainly in situations of patients' interaction with the
oncology service (medical, nursing, and administrative professionals), defined as
good. According to the interviewees, the way the service team welcomes the
patient with empathy, cordiality, affection, and sympathy conveys security and
tranquility. The care with which the nurse welcomes the patient facilitates coping
with the disease, reducing anxiety and stress. In particular, the humanized
reception carried out by the medical care team generates a relationship of trust and
respect, increasing the feeling of well-being and generating a positive experience,
aligned with Youngson and Blennerhassett (2016), and Hashemi et al. (2022).
Interaction between cancer patients was also reported in the interviews. According
to the interviewees, the interaction between patients is positive and generates a
sense of belonging as they share experiences and exchange information in relation
to their situations as cancer patients. Humanization in this case is reported by the
form of reception, with demonstrations of affection and empathy during the time of
treatment. Although there is no mechanism in the health service that encourages
this type of interaction, it happens as a form of support among patients, which
provides the creation of affective bonds and a more hopeful environment, aligned
with Hashemi et al. (2022).
Humanization was also perceived in aspects related to the defense of the rights of
cancer patients. Respondents reported that the approach taken by medical
professionals to communicate the diagnosis was objective and clear, making them
aware of the real situation in which they found themselves. Communication is
defined as one of the pillars for the implementation of the NHP, favoring health
professionals to understand the patient, their needs and uniqueness, as well as
provide the patient with access to information about their diagnosis, treatment, and
prognosis (Brazil, 2004).
In addition, according to the interviewees, despite the technical language used in
the description of the diagnosis, the medical professionals sought to reassure them,
presenting the possible treatments available through the SUS as well as advising
them on the most recommended treatment plan for their condition. At this point, it is

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 Humanization in Oncological Health Services: A Brazilian case study

observed that despite the humanization guidelines recommending shared decision-

making, this ended up being the responsibility of the medical professional, since the
interviewees did not feel safe in giving an opinion and perceived the medical
professionals as qualified to decide the outcome. However, for the interviewees,
keeping them informed about the care provided, helping in decision-making, and
coping with the difficulties encountered during treatment are important factors to
promote engagement, aligned with Geraldo and Andrade (2022).
Another aspect reported refers to the access of cancer patients to services and
support networks, such as leagues. According to some of the interviewees, the role
played by the league is fundamental, as it acts in a complementary way to the
treatment of the disease, providing support for financial, emotional, and social
issues. In addition, patients perceive that the league provides comprehensive care,
considering all its characteristics, context, mental health, and well-being, as pointed
out by Whits (1985).
One interviewee pointed out the importance of the Ombudsman service,
established in SUS, as a way of reporting negative and positive situations without
the need for identification. Qualified listening is another pillar of the NHP (Brazil,
2004). In addition, this type of technological resource provides the opportunity to
manifest different situations without exposing the patient to any type of
embarrassment, aligned with Carayon, Hundt and Hoonakker (2019).
In short, our results showed that the factors which contribute to humanized care are
related to human interaction (patient-health professionals), involving affection,
cordiality, respect, and empathy. And less relevantly, the defense of users' rights,
with regard to diagnosis and treatment options, as well as a support network and
manifestation channels.

Aspects that hinder humanized care

In this second section, we present the aspects that hinder to humanized care
according to the patients' perception of the oncology service. From the interviews
carried out with cancer patients, we identified different aspects. These aspects were
categorized into aspects related to the service and aspects beyond the service. The
origin of these aspects is different, but both impair the patients' perception of
humanized care.
Regarding the aspects related to the service, two thematic categories were
identified, from the data of the interviews: the relationship between health
professionals and patients; and ambiance. Concerning the relationship between
professional and patient, the aspects that hinder to humanized care, according to
the patients, are bad mood of the health professional in dealing with the patient,
technical communication between healthcare professional and patient (without
establishing good communication, and limited active listening), standardization of
care (not taking into account different needs), and overload of the service
professional, making the service less empathetic and enlightening. It was noted that
these aspects negatively influence the perception of humanized care, even more
taking into account the vulnerability of cancer patients, who require personalized
care according to their needs, as pointed out by Costa, Lunardi Filho and Soares
(2003) and Hashemi et al. (2022). These patients are so fragile that their perception
of humanized care goes far beyond a good diagnosis; it requires attention, care,
concern, dialogue, and the establishment of bonds with the health professionals, as
pointed out by Youngson and Blennerhassett (2016).
Regarding the ambiance, the interviewees indicated aspects that make it difficult to
perceive humanization in the health service. Some patients struggle with mobility
and locomotion barriers. They pointed out that the institution and the service do not

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provide enough structure for everyone to use them. The lack of ramps, adequate
signage, and resources that address individualities were identified as factors that
influence the perception of humanized care. In addition, patients indicated that the
service space is too small. When they are not feeling well or receive bad news from
the doctor, their individuality is compromised, as all the other patients at the
reception are observing what is happening. This is related to the concept of
humanization brought by Carvalho, Paula and Moraes (2007), in which
humanization is more than technical aspects related to care, but other aspects of
this process, as pointed out by Santos et al. (2012), and Geraldo and Andrade
(2022).
The aspects beyond the service that hinder humanized care are related to patients’
perceptions of delay to receive care, waiting in lines, wrong entrance doors, search
for other services in the hospital, etc. These are issues that generate discontent, but
that are not necessarily related to the service, but rather to the Brazilian health
system and its bureaucracies. The aspects that appeared the most in this category
were related to SUS’ bureaucracies and lack of clear information. Regarding the
bureaucracy, patients reported confusion about the flows to be followed in the
service after the consultation and during the treatment, different information for
patients to assimilate, and the need for a companion support to understand the
processes - which was not always possible. These aspects are related to the
healthcare system bureaucracy, but also to the lack of clear information about the
bureaucratic processes involved in care. Patients receiving oncological care in the
institution sometimes did not know that they could not receive other treatments
there. Instead, they should seek public assistance at other gateways, such as basic
health units, for example. That is, this is part of the flows of SUS, but which are not
clear to the patients who use it, contrary to what was proposed by Santos et al.
(2012), and Geraldo and Andrade (2022). Therefore, discontents related to these
aspects are not directly related to the oncological service, but to the health system in
general. These less humanized aspects impact the patient's quality of life
throughout their treatment (Phillips & Currow, 2010). In this context, design plays a
critical role in delivering healthcare and generating better experiences for patients
(Swann, 2017; Moritz, 2005).
In summary, the factors that make this perception difficult are associated with
technical communication, bureaucracy related to treatment, and waiting time for
care, which influence the experience, engagement, and well-being of the patient.
Our results are summarized in Figure 1.

Figure 1. Factors which contribute to or make difficult humanized care

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 Humanization in Oncological Health Services: A Brazilian case study

Conclusion
The humanization of healthcare entails affection, dedication, and respect for others,
considering the person as a complete and complex being, to generate positive
experiences, engagement, and well-being for cancer patients. This study aimed to
investigate the aspects that contribute or hinder humanized care according to the
patients' perception of an oncology service.
As a research method, a case study was carried out in an oncology outpatient clinic
of the SUS in a Brazilian hospital. The data was collected through in-depth
interviews with patients.
From our findings, we observed that the factors which contribute to humanized care
are related to human interaction (patient-health professionals), involving affection,
cordiality, respect, and empathy. The factors that make this perception difficult are
associated with technical communication, bureaucracy related to treatment, and
waiting time for care, which influence the experience, engagement, and well-being
of the patient. In this sense, according to the perception of cancer patients, the
health service seeks to implement the principles and guidelines recommended by
the NPH but has points of improvement that still need to be further designed. In
addition, the results of the study indicate that the search for the humanization of
care makes patient treatment less traumatizing as it encompasses a look at the
different dimensions and the patient's global needs, according to Anacleto,
Cecchetto and Riegel (2020). In this way, it reiterates the importance of the NHP in
directing and implementing best practices in humanization of care in the context of
the process health disease of users with cancer, as well as, points to service design
as an approach that can contribute to these projections (Swann, 2017; Moritz,
2005).
This study has limitations regarding the possibility of being generalized, as it is a
case study. Aiming at new studies, research with a quantitative approach is
suggested, as well as comparative studies. We understand that the study seeks to
contribute to the improvement of health services as it highlights the importance of
humanization from the perspective of the patient. In addition, based on the results
found, it is possible to design services that encourage aspects that contribute to
humanization and minimize those aspects that make humanization difficult, aiming
to generate better experiences, engagement, and well-being for cancer patients.

Acknowledgements: We would like to thank the Coordenação

de Aperfeiçoamento de Pessoal de Nível Superior (CAPES) -
Programa de Desenvolvimento da Pós-Graduação (PDPG-FAP)
for the financial support.

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 INCLUDE 2022. Unheard Voices
11th Inclusive Design Conference
Helen Hamlyn Centre for Design
Royal College of Art London, UK
22-23 September, 2022

Empowering Patientship
Exploring the conceptions of patient-centeredness via
definitions and cases

Miso KIM*
Department of Art+Design, Northeastern University, Boston, USA
Michael Arnold MAGES
Department of Art+Design, Northeastern University, Boston, USA
Stefano MAFFEI
School of Design, Politecnico di Milano, Milan, Italy
Paolo CIUCCARELLI
Department of Art+Design, Northeastern University, Boston, USA
Beatrice VILLARI
School of Design, Politecnico di Milano, Milan, Italy
Massimo BIANCHINI
School of Design, Politecnico di Milano, Milan, Italy

Socio-technical transformations in digital technology and healthcare have

enabled the growth of patient-centered care models. Furthermore, the global
pandemic highlighted the essential role of design in integrating these
innovations with human-centered design approaches and the development of
products, services, and caregiving systems to enhance patients’ lives. Our aim
is to highlight the significance of humanizing healthcare by identifying emerging
practices in two regions to develop a structured account of the range of
approaches that can empower patients and transform the culture of caregiving
systems. As a preliminary work, we review definitions of patient-centered care
from health-related literature and share cases in which patient-centered design
is a key factor. We provide a thematic analysis of aspects that constitute
patient-centered care and graph different perspectives on patient-centric
approaches in both domains. We compare and contrast the perspectives of
patient-centered care to patient-centered design. Our goal is to provide a
theoretical basis for patient-centeredness that can offer a shared ground and
language to facilitate interdisciplinary collaboration, and expand the conception
of patient-centeredness, emphasizing collective wellbeing in addition to
individual health.
Keywords: healthcare design; patient-centeredness; empowering patientship;
humanizing healthcar

* Contact: Miso Kim | e-mail: [Link]@[Link]

90
 Empowering Patientship: Exploring the conceptions of patient-centeredness via definitions and cases

Introduction
The last decade has been characterized by socio-technical transformations in the
field of healthcare, fostering the growth of patient-centered care models in clinical
research and policies. Concurrently, the global pandemic highlighted the essential
role of design in integrating these technological and social innovations with human-
centered design approaches and the development of product-service systems to
include patients in the process of medical care. However, there is a dearth of
studies that systematically explore the theories of patient-centeredness in relation
to the constellation of healthcare and design practices, and investigate the
significance of humanizing healthcare.
In this paper, we present a project titled “Empowering Patientship,” in which design
scholars from research centers in Europe and the United States collaborate to
study patient-centric design cases. The project was initiated in 2017 by Polifactory,
Department of Design, Politecnico di Milano, in Milan, Italy. Its goal was to build a
theoretical framework and a structured methodology in order to identify, map, and
systematize innovative product-service practices and illustrate the ongoing patient-
centric transformation of the healthcare field in Italy. This research activity was later
expanded to include agents who are central to this transformation: patients and
their associations, caregivers, and varied healthcare providers. This research has
ultimately made it possible to shape and graphically view the agents who are
involved in healthcare in a holistic manner, via maps that present the design
process underlying the development of healthcare services and products and the
three main areas of the Italian healthcare system: patient & caregiving system,
healthcare & research system, and the system of making, manufacturing, new
entrepreneurship.
Since 2022, a collaboration has begun with the Center for Design at Northeastern
University, Boston, Massachusetts, USA. The center is a platform for
interdisciplinary design research in collaboration with healthcare organizations,
healthcare design firms, and other healthcare experts from diverse fields in Boston.
The Milan and Boston teams are building on the previously mentioned research to
explore the emerging role of patients and caregivers as user-innovators within
design processes. Specifically, we are collecting and mapping patient-centered
projects in two regions and conducting a literature review of definitions of patient-
centeredness. Our goal is to develop a systematic account of the range of
approaches that can empower patients, identify potential opportunities to humanize
healthcare, and develop future strategies for designers to transform the culture of
caregiving systems.
In this paper, we share our preliminary findings on definitions of patient-
centeredness, addressing the fundamental research question, “What is patient-
centeredness in healthcare and design?”. In the following section, we will share the
diverse meanings and perspectives that comprise the concept of patient-
centeredness. These definitions were collected through a literature review of
healthcare and design, as well as a collection of real-world cases.

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MISO KIM, MICHAEL ARNOLD MAGES, STEFANO MAFFEI, PAOLO CIUCCARELLI, BEATRICE
VILLARI and MASSIMO BIANCHINI

Definitions of Patient-Centeredness

Patient-centeredness in healthcare
In order to study the diverse dimensions of patient-centeredness we conducted a
literature review across different disciplines (oncology, emergency medicine,
pediatrics, diagnostics, healthcare information technology, psychology, and care
facility organizational structures) focused primarily on systemic reviews from 2012
to 2022 on PubMed.
We found 10 main areas of overlap (Figure 1), with listening to patients at the
center (Davis, Schoenbaum, & Audet, 2005; Kvåle & Bondevik, 2008; Saha, Beach
& Cooper, 2008; Pinto et al., 2012; Hoerger et al., 2013; Rathert et al., 2015;
Truccolo et al., 2016; Gabutti, Mascia, & Cicchetti, 2017; Fix et al., 2018; Mitchell et
al., 2020; Abdullahi Yari et al., 2021; Geerts et al., 2021; Leidner et al., 2021;
McGrady, Pai, & Prosser, 2021; Wittenberg et al., 2021). Systematic reviews
viewed patient-centeredness as taking into account a holistic view of the patient
and incorporating their wishes and capabilities (Saha, Beach, & Cooper, 2008;
Hoerger et al., 2013; Rathert et al., 2015; Fix et al., 2018; Cotta Ramusino et al.,
2021; Geerts et al., 2021; Leidner et al., 2021; McGrady, Pai, & Prosser, 2021;
Wittenberg et al., 2021). This leads to the creation of individualized care plans
(Mead & Bower, 2000; Saha, Beach, & Cooper, 2008; Pinto et al., 2012; Shankar,
Bhatia & Schuur, 2014; Truccolo et al., 2016; Fix et al., 2018; Hohmann et al.,
2020; Cotta Ramusino et al., 2021; Geerts et al., 2021; Leidner et al., 2021;
McGrady, Pai, & Prosser, 2021; Wittenberg et al., 2021).
Most reviews stressed honest sharing of information with the patient and taking
efforts to convey medical knowledge and options in a way that patients can
understand and make judgments upon (Davis, Schoenbaum, & Audet, 2005; Kvåle
& Bondevik, 2008; Saha, Beach, & Cooper, 2008; Pinto et al., 2012; Hoerger et al.,
2013; Shankar, Bhatia, & Schuur, 2014; Rathert et al., 2015; Truccolo et al., 2016;
Mitchell et al., 2020; Abdullahi Yari et al., 2021; Cotta Ramusino et al., 2021;
McGrady, Pai, & Prosser, 2021; Wittenberg et al., 2021). There are fields, such as
oncology, that are divided in regards to the quantity and timing of information
delivery due to the impact disclosure results could have on the patient. (Mitchell et
al., 2020; Cotta Ramusino et al., 2021). As many papers place strong emphasis on
the patient’s psychological state within their definition of patient-centeredness
(Mead & Bower, 2000a, 2000b, 2002; Pinto et al., 2012; Rathert et al., 2015;
Truccolo et al., 2016; Fix et al., 2018; Mitchell et al., 2020; Cotta Ramusino et al.,
2021; Geerts et al., 2021; McGrady, Pai, & Prosser, 2021), at the expense of
honesty, there is a divide in the literature where the balance lies.
A dominant concept in literature is that the doctor and patient should share power in
the collaboration of a healthcare plan, though there is a divide on what this entails.
Some believe this collaboration is a way to elicit buy-in from the patient for the
doctor’s prescribed course of treatment, but avoid giving the patient real power over
their treatment choice. Many doctors view giving patients the option to make what
they perceive to be a suboptimal choice as a violation of the doctor's oath to do no
harm (Davis, Schoenbaum, & Audet, 2005; Saha, Beach, & Cooper, 2008; Pinto et
al., 2012; Hoerger et al., 2013; Rathert et al., 2015; Truccolo et al., 2016; Fix et al.,
2018; Abdullahi Yari et al., 2021; Geerts et al., 2021; Leidner et al., 2021; McGrady,
Pai, & Prosser, 2021; Wittenberg et al., 2021). Others believe in an iterative
communication process in which the patient is informed of the current status of their
condition and treatment plan, alternatives and tradeoffs throughout the care
process, and being actively involved in requesting changes in care (Mead, Bower, &
Hann, 2002; Davis, Schoenbaum, & Audet, 2005; Truccolo et al., 2016; Gabutti,

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 Empowering Patientship: Exploring the conceptions of patient-centeredness via definitions and cases

Mascia, & Cicchetti, 2017; Hohmann et al., 2020; Geerts et al., 2021; Wittenberg et
al., 2021).
On an organizational level, patient-centeredness is viewed as optimizing the overall
experience of patients from the moment they walk into a facility (Fix et al., 2018).
This entails restructuring hospitals and care facilities to be oriented toward
individual patients and their unique needs rather than organized in specialist
departments and primary physicians (Saha, Beach, & Cooper, 2008; Rathert et al.,
2015; Gabutti, Mascia, & Cicchetti, 2017) and providing continuity of care (Davis,
Schoenbaum, & Audet, 2005; Saha, Beach, & Cooper, 2008; Rathert et al., 2015;
Gabutti, Mascia, & Cicchetti, 2017; Hohmann et al., 2020; Geerts et al., 2021;
Leidner et al., 2021).

Figure 1: Patient-centered care definition aspects collected from PubMed.

Patient-centeredness from collected cases

We have also reviewed cases from existing projects to distill concepts that convey
patient-centeredness as reflected in practice. The data set includes 60 cases in the
greater Boston area. The most prominent theme (16 cases) was early detection and
minimizing preventable harm amongst patients. A number of projects were
designed to identify and reduce patients’ safety threats, prioritizing patient
outcomes. Further, designs to track biostatistics in real-time and extend digital
reach allow physicians the opportunity to make timely interventions and mitigate
patient risks. Digitizing the care management experience affords a shift from
intermittent to continuous care, in between traditional care visits, which seemed to
be a priority in eight cases.
Such digitization helps to promote another critical component noted in the cases,
coordination and collaboration between the entirety of the patient’s care team to
provide holistic care and ensure a positive overall patient and provider experience.
Coordination and collaboration was, in most cases, also extended to the families
and support systems of patients, acknowledging the integral role that these
members play in patients’ health and patient-centered care. Partnership of patient,
family and care team enables personalized patient care that ideally reflects patient
wants, needs and preferences, another theme that occurred in 13 cases.
Lastly, the empowerment of patients to actively participate in their own care and
make informed decisions for their health was also mentioned in 12 cases. Such

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projects utilized design that served to educate patients, allow easier access and
control of their health information, as well as enhance continued communication
and support from providers, with the goal of enabling patients to control their own
individual journeys.

Figure 2. Mapping of the definitions collected from real-world cases

Patient-centeredness in design
Inclusion of patients and more diverse agents has profoundly changed the design
of cure and care activities, pushing the boundaries of design as a discipline,
profession, and attitude towards healthcare organizational models. At the same
time, it assisted in the rise of a new series of practices and experiences where
patients pro-actively contribute to co-produce, co-create and co-design solutions to
their often-unmet needs. We can define this happening as patient innovation, in
other words, an array of open, collaborative, and participatory products, services,
processes, and systems generated by their end-users (Bogers et al., 2010; Von
Hippel, 2009, Ciuccarelli, 2008). As a result, design becomes a tool for progress
toward new healthcare paradigms (DeMonaco et al., 2019).
Contemporarily, innovation within healthcare ecosystems also means measuring
and analyzing the impact of the innovation led by patients, caregivers, and
caregiving systems (Zejnilović et al., 2016; Gambardella et al., 2017). Furthermore,
it often means a holistic understanding of all the relationships which rule the
connections between transformation mechanisms and bottom-up innovations
(Keinz et al., 2012; Trott et al., 2013). As a result, a new role for design arises, to
integrate and align the different actors’ perspectives while co-creating value
(Pereno & Eriksson, 2020; Sangiorgi et al., 2020; Vink et al., 2021). Here, design is
the result of the activity of new creative profiles (i.e., citizens, makers and ultimately
patients) who alter the politics of the system of production, emphasizing the
importance of co-design and co-creative approach in the design of healthcare
services, products, and ecosystems (Maffei et al., 2022).

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Exemplar Cases
The understanding of the concept of patient-centeredness and its contextualization
in design provides us with the coordinates to map and analyze services in
healthcare in which the participation of the patients is clearly identifiable and the
contribution of design is recognizable in the implementation of tangible and
intangible elements. To highlight a few emerging themes from the definitions of
patient-centeredness, we introduce two healthcare design cases from 100+
samples in Milan and Boston.

Co-design + Listening to patients and/or their families

TOP! and Say Eye are open source co-designed eye tracking softwares developed
by Open Dot, a digital fabrication lab, and TOG Foundation, an NGO working on
rehabilitating children. These two entities collaborated in the development of tools
to enable children with cognitive/motor impairments to communicate with their eyes,
thus creating new therapeutic activities. The co-design process involved Domus
Academy design students and TOG’s clinical staff working together to identify
different ways the eye-tracking software might support communication and learning.
After the initial research phase and the design of prototypes, the project team
involved children’s families in co-design activities to ensure that the softwares
would address real, specific problems in the therapeutic journey. OpenDot asserts
two markers identified above of patient-centered care: a focus on patient needs,
and patient involvement in the design work.

Figure 3: Top! game session. Taken from: [Link]

tracking-for-child-rehabilitation-19f89683492a

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Figure 4: A co-design session between designers and the families of the patients. Taken from:
[Link]

Holistic understanding + Continuous care that coordinates

patients, families, and providers
iHealthSpace is a patient engagement platform designed by Massachusetts
General Hospital to create a more personal and collaborative healthcare experience
for patients and their care team. iHealthSpace provides a connected customized
virtual space that empowers patients to contribute to their healthcare with the
support of their family, friends, and care providers, to reduce the fragmentation
imposed by organizational boundaries and put the patient front and center. Through
understanding health and workflow needs from a patient perspective, iHealthSpace
is designed to optimally support patients in tasks to assess their current state of
health, manage problems, and prevent medical complications.

Figure 5: iHealthSpace main page (Chung et al., 2011)

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 Empowering Patientship: Exploring the conceptions of patient-centeredness via definitions and cases

Figure 6: Communication and coordination among multiple agents in the iHealthSpace (Chung et al., 2011)

Discussion and future directions

One key differentiating factor between the care process and the design process is
that the design process holds more varied opportunities for involvement by patients,
allowing room for accommodating the diverse needs of people with different
conditions. For patients, care is something that happens to patients, oftentimes
intimately, where design is characterized by a more remote and reflective
relationship. Opportunities for involvement in patient-centered design might allow
the patient to assume control or partnership with designers to determine how the
design unfolds. In healthcare design contexts, co-design practices offer
opportunities for involvement throughout the lifecycle of the project and can range
from a consultative role of patient engagement, an example could be asking
patients to validate a design, to patient participation, where patients are involved in
iterative discussions over the design process, to co-production, where patients are
deeply involved throughout the entire lifecycle of the design process. In this
preliminary analysis, key to understanding the different centerings of patient-
centered design and patient-centered care is a richer understanding of involvement,
and how the patient is implicated in each process.
In this preliminary analysis, we found some disparities of note between the
assertions of patient-centered care in the literature, and the practices of patient-
centered design as materialized in the cases. Several aspects of patient-centered
care that were quite dominant in the literature were less well represented in the
cases of patient-centered design. Most notably, listening to patients and/or their
families — a key aspect in the literature — was rare in the cases. Several other
prominent aspects in the literature, reliance on patient perspectives, patient
engagement, and power-sharing were much less prevalent among the cases. Some
possible arguments for this variance could be that an insufficient number of cases
have been surveyed, or that there is a particular bias in the selection of cases from
the Boston area. We believe it more likely, however, that these particular elements
rely more upon the social cohesion of the doctor ⇔ patient relationship, and it is
more difficult and perhaps also less desirable to delegate these aspects to objects.
This seems to be a likely conclusion, taking the listening aspect as an example. The
current state-of-the-art of voice-to-text translation and natural language processing
does not well support objects that listen.
Some aspects of patient-centered design that were prominent among the cases
were not as prominent in the literature of patient-centered care. Based on the team
members’ expert knowledge of design, we would argue that a likely case for this
discrepancy is that the cases emphasize patient-centered aspects that software or
other designed artifacts are likely to handle well. Essentially, certain tasks are

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easier to delegate to software and digitally-enabled objects. Early detection,

coordination and collaboration between providers, personalized care, the inclusion
of patients & families, continuous care, and experience optimization are all aspects
of patient-centered design that have a significant history of support in interaction
and service design practices. Further, these are aspects of care practice that can
be effectively achieved through the exchange of various data.
Based on our continuing research findings, we will collect more cases and identify
key factors and patterns that constitute patient-centeredness to create a map of the
existing different perspectives. Our analysis will include intervention points in the
design processes, disciplines and agents, and philosophical backgrounds. We will
develop a holistic vision encompassing the preliminary considerations from this
review on definitions. First, there is the need to analyze and merge concepts
belonging to domains that are not strictly design related. Secondly, our exploration
urges us to explicitly include the caregiver and caregiving system together with the
patients. This also entails considering in the design activities the value created by
the complex formal and informal relationships among the diverse agents involved.
Our ultimate goal is to develop a framework of patient-centeredness, a metric for
evaluation, and identify opportunities and strategies to humanize healthcare design.

Conclusion
This project will contribute to the field of design by delineating a theoretical basis for
patient-centeredness with a goal of providing shared ground and language to
facilitate interdisciplinary collaboration. We aim to explore the future of healthcare
and expand the conception of patient-centeredness, emphasizing the collective
wellbeing of the community and various publics in addition to individual health. This
framework will contribute to inclusive design by more clearly articulating the
positioning of people with diverse health conditions at the center of the healthcare
system and providing care in their everyday life settings to accommodate different
needs. The World Health Organization (2016) described people-centered care as
healthcare system that supports “the comprehensive needs of people rather than
individual diseases, and respects social preferences (...) encompassing not only
clinical encounters, but also including attention to the health of people in their
communities and their crucial role in shaping health policy and health service” (p2).
The success of a patient-centered design can precipitate substantial shifts at both
the production and policy level, inducing organizations to translate diverse patients’
and actors’ design contributions into reality. This crucial change has consequences
for the role of Design as a discipline and its evolution, bringing novel perspectives
on the meaning of inclusiveness in healthcare.

Acknowledgements: Uri Seitz (College of Arts Media and

Design, Northeastern University, Boston, USA), Estefanía
Ciliotta Chehade (Center for Design, Department of Art+Design,
Northeastern University, Boston, USA), Krystal Anne Abbott
(Department of Health Sciences, Northeastern University,
Boston, USA), and Leonardo Saletta (School of Design,
Politecnico di Milano, Milan, Italy) are key contributors to this
paper. The project and paper would not have been possible
without the hard work of Uri, who led the literature review,
Estefanía, who led the management of the project and
supervised the student team, Krystal, who led the collection of
cases from the Greater Boston area, as well as Leo, who
contributed with the Milan cases.

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Track 3. Inclusive Design
Applications
Environment and social impact

Access Denied: Decoding barriers to accessibility in market p.105

streets of New Delhi
Rajshri JAIN

Design and Implementation of Self-adapting Toilets for Semi- p.121

public Environments: Reflections on transferring a home
solution to semi-public places
Paul PANEK and Peter MAYER

Healthy and Inclusive Neighbourhoods: A theoretical p.133

framework for hearing excluded city voices
Daniele BUSCIANTELLA-RICCI, Sara VIVIANI, Kiana KIANFAR and
Alessandra RINALDI

Fashion and dress

Inclusive and Sustainable Fashion Product-Service System p.145

for Evolving Bodies during / after Pregnancy
Daria CASCIANI and Maria Antonieta SANDOVAL RAMIREZ

A Qualitative Analysis of the Challenges for Women with p.161

Physical Disabilities when Buying Fashion Online
and In-store
Yasmin KEATS, Ellen FOWLES and Grace JUN

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Track 3. Inclusive Design

Applications
Mobility

Inclusive Shared Autonomous Vehicles: Identifying areas for p.170

inclusive design intervention
Robin SEVERS, Jiayu WU, Cyriel DIELS, Dale HARROW and Richard
WINSOR

People Moving Through Space: Towards a comprehensive p.188

framework to decode spatial exclusion
Lakshmi SRINIVASAN

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11th Inclusive Design Conference
Helen Hamlyn Centre for Design
Royal College of Art London, UK
22-23 September, 2022

Access Denied
Decoding barriers to accessibility in market streets of
New Delhi

Rajshri JAIN*
CEPT University

Urban India is kinetic and constantly evolving with its deep-rooted histories and
cultures, struggling to strike a balance with the ever-changing demographics,
disparities, demands and supplies.
Within this palimpsest of layers and its chaos, accessibility serves as a grave
urban issue that needs to be catered to. The undertaken research addresses
accessibility in public spaces for one such user group, i.e., differently abled who
are at the forefront of those who face this problem. Imagining the daily routine
of a differently-abled in the public realm is a struggle where it’s challenging to
go from one place to another, which dissuades their independent mobility.
Thus, the research assesses the state and suitability of two market streets in
New Delhi (Hauz Khas Market and Khan Market) for people with motor and
vision disabilities by documentation of the visible and invisible barriers faced at
the scales of wayfinding, market premise and threshold spaces; through means
of an accessibility checklist that is derived from the existing guidelines in India.
There are various design solutions and strategies available in the public realm
made with ample efforts to ensure that they are integrated and harmonised to
cater to all user groups. But, assessment of the market streets with respect to
the necessary space requirements to be followed as per the guidelines in the
chosen context for differently abled reveals gaps between the ideal and existing
scenario.

Keywords: accessibility barrier documentation; independent mobility and

accessibility; Indian market streets; inclusive design guidelines

* Contact: Rajshri Jain | e-mail: [Link]@[Link]

105
RAJSHRI JAIN

Introduction
“Disability is not just one health problem. It is a complex
phenomenon, reflecting the interaction between features of a
person’s body and features of the society in which he or she lives.”
(World Health Organisation, n.d.)
Disability is an often disputed notion that has complex dichotomies attached to it.
As the definition above provided by the World Health Organisation also suggests, it
is heavily dependent on the societal norms and prejudices of what one views as an
ability or disability. It is rather a societal imposition that views the physical, mental
and cognitive differences in human beings as being ‘different’ as the limitation
present due to the non-inclusive ableist1 society.
Disability in the realm of architecture is viewed as an afterthought to design. There
are various barriers faced by the differently abled in public spaces, which serve as a
hindrance to accessibility from one place to another. Enablement of design
solutions and guidelines inclusive of the differently abled in public streets can lead
to their social inclusion and independent mobility.
The non-availability of physical infrastructure especially in public spaces forces
wheelchair users and people with vision disabilities to be dependent on the so-
called abled for the rest of their lives. Thus design holds this responsibility to
create an equitable and universal urban environment. There is an existing
knowledge base regarding design solutions in public spaces to create an
accessible environment in the form of design guidelines, but the actual state of the
markets is far from ideal. Thus there is a need to document the existing state of
markets vis-à-vis differently abled and their space requirements, which serves as
the gap between what should be there versus what is there. Thus, the research
aims to normalise daily mobility and accessibility of differently-abled people in
public spaces such that they have equal access to spaces, reducing their
dependency on others and empowering them through design.

Disability, Design and Public Spaces

Defining Disability vis a vis Design

Anthropometrics is a crucial factor that shapes up building proportions in the
realm of design and architecture. Taking the ‘average human’ as the measure, the
buildings are shaped according to humans rather than vice versa.

Thus there is a dire need to question who we imagine as the end-

users of spaces, who is being left out, and why.
As design students, we study anthropometry in our education where fundamental
human dimensions and spaces required by the average human are seen as
standards for designing spaces. Adding to the rigidity of standards and the modular
man that uses an idealistic human body as a measurement, we disregard
‘differently abled’ as a section of the society that is not a part of the ‘normal’ end-

1
Ableism - societal prejudice against people with disabilities.

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user group. Thus disability in the design education system fails to be embedded
properly to be inclusive because the standard itself, which is used as the average,
is flawed as it disregards the differently abled. We hardly envisage differently abled
beyond the regulations of wheelchairs, as humans who should have an equal right
to spaces. The concept of inclusive design is limited as a regulatory box to be
ticked, disregarding its generative impetus in the design discourse.
Designers tend to create an order or system of things with ‘obedient bodies’
following predetermined circulation paths and occasional ramps creating vistas and
aesthetics. But what and for whom is a design-centred round?
The human being is not a stereotype, but the body shape and size is considered to
be a stereotype due to various societal assumptions. To understand the violence
inflicted by design of spaces for differently abled, let’s look at the following terms
that deem one as ‘different.’
Ability - skill to do something
Inability - the state of being unable to do something
From the terms above, there is a need to question whether inability is limited to the
handicap faced by a differently-abled or the physical environment dissuades one
from being able enough to do something. In India, 20 million people are differently-
abled, which means 2.1% of the population has various disabilities (Census of
India, 2001). These physical and sensory disabilities get further amplified with non-
accessible public spaces, which take away their independence to reach from one
place to another. The differently abled are marginalised into various special homes,
day-care centres, and schools which doesn’t lead to a socially-inclusive solution but
rather a disabled-centric design approach. For example:
- a school for differently abled
- a house for differently abled
The underlying approach in the statements above is to design a space for the
differently abled, which creates a ‘special’ physical environment accessible by
them, but the need of the hour is to design spaces that are inclusive of the
differently abled. Thus it is necessary to envisage public spaces and their designs
as inclusive, i.e., a focus on being universal instead of catering to separate needs.
By undertaking an inclusive instead of an exclusive approach towards design, no
section of the society will be left out or classified as different.

Differently Abled and Public Spaces

“A public space refers to an area or place that is open and
accessible to all peoples, regardless of gender, race, ethnicity, age
or socio-economic level.” (UNESCO,2017)
One of the most commonly accepted definitions of what we consider a public space
illustrates that it should be equitable and usable by all in the ideal scenario. But
there is a clear gap between the theoretical construct of what we consider a public
place and the reality, especially in the Indian context.
There is an existing knowledge base in India regarding barrier-free design in
specialised schools and NGOs for the differently abled. With the changing building
by-laws, public buildings and MNCs are making conscious efforts to provide at least
the bare minimum of ramps and lifts for the differently abled.
But beyond these buildings, the ‘public spaces’ are left to their own fate.

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The non-availability of adequate physical infrastructure, especially in public spaces,

dissuades people from independently accessing any place. Rather than the
destinations in itself, the journey undertaken from one’s dwelling to reach the
destination is more detrimental due to broken sidewalks and unavailable facilities,
which forces a differently-abled to be dependent on someone else for mobility.

Design Considerations
Anything that prevents people with disabilities to independently traverse and take
part in society because of their disability can be termed as a barrier. The most
commonly known barriers to accessibility are as follows:
1. Physical Barriers: Barriers that arise due to inadequacy of physical infrastructure
such as uneven walkways, lack of accessible elements such as kerb ramps,
auditory information, inappropriate widths, etc.
2. Information Barriers: Barriers that dissuade people from understanding the
available information and directions such as absence of auditory information, braille
signage, large prints, etc.
3. Social Barriers: There are a number of societal prejudices in India faced by
people with disabilities such as deeming a disability to be a personal tragedy or
punishment for any past wrongdoing to name a few. They are viewed to be
‘different’ due to physical handicaps, which leads to their social exclusion.
This further leads to various psychological barriers for persons with disabilities as
they feel insecure in traversing independently due to the discerning behaviour of
people, especially in public spaces. Thus both these visible and invisible barriers
lead to creating a non-accessible environment for the differently-abled.

A barrier-free environment enables independent access for all without a need for
assistance in their daily routine and activities such as employment, leisure, buying
goods, availing services, [Link] barriers are not just faced by people with vision
or motor disabilities but also elderly people, people with hearing disabilities,
pregnant ladies, and many more.
Access is a fundamental right for every human being. It cannot be an option or
choice to cater; rather a mandate that doesn’t discriminate against people based on
their physical disability and instead makes use of it as a design generator. There
are no two categories of disabled and able; it isn’t the physical disability and
handicap that serves as a barrier but rather the physical inadequacies of the built
environment and people’s prejudices that labels one as able or disabled. Thus a
barrier-free environment is one that propagates for all humans to have equal
independent access to the public services present.

Available Design Guidelines

1. Physical Accessibility: Harmonised Guidelines and Space Standards for Barrier-
Free Built Environment for persons with Disability and Elderly Persons, 2016
2. Transport Accessibility: National Urban Transport Policy, 2014
3. ICT Accessibility: National Policy on Universal Electronic Accessibility
Since the guidelines individually addressed the creation of barrier-free
environments, there was a need to harmonise all to create more comprehensive
and curated documents that could be followed universally. In order to do so and
make it more cohesive, a participatory approach was undertaken, which included

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ministries, agencies, national institutions, state governments, and NGOs such as

Samarthyam and Svayam. As a result of the steps undertaken, Harmonised
Guidelines and Space Standards for Barrier Free Built Environment for Persons
with Disabilities and Elderly Persons were released in February, 2016 which are the
primary guidelines referred to for the undertaken research.

Research Framework
The plethora of available design guidelines offer various design solutions and
criteria that can help one to review the accessibility of spaces. Thus in order to
assess the state of markets, i.e., public space for their structural accessibility the
following chronology was followed to identify scales, elements and parameters of
analysis. The audit checklists for accessibility are formed from observation in the
urban environment and the available guidelines.
In order to develop a holistic understanding of the built environment, the mappable
parameters need to take in account both physical and sensory attributes. Especially
taking a look at spatial perception of spaces for differently abled, where certain
senses are heightened in the absence of one, documentation of both these aspects
can help in better identification and mitigation of the barriers in the existing
environment. Taking a look at figure 1, most of the physical attributes and their
space requirements are available in the form of the various guidelines listed.
Further taking a look at haptic perceptions which is a sensorial attribute, is also
present in the design guidelines. But the olfactory and auditory perceptions of
spaces are not present.

Figure 1. Attributes of Analysis

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Case Studies
Markets with similar physical settings, situated in the same cultural and climatic
background of New Delhi are chosen for the purpose of this study to avoid physical
variables and have ease in formulation of inferences. Further, both the ‘designed’
markets display a similar built typology of residential and commercial. Khan Market
is completely commercialised whereas Hauz Khas Market is in process of the
same.
The two markets were studied were assessed for the scales of wayfinding, market
premise and threshold as follows:

Wayfinding
Wayfinding relates to the route undertaken to reach from one place to another
along with the user experience and orientations within it. Hence in the undertaken
study the wayfinding route consists of the distance between the nearest public
transport (metro station) to the market entrance.

Figure 2. Wayfinding Parameters

Figure 3. Accessibility Checklist Derivation for Wayfinding Scale

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Figure 4. Wayfinding routes for Hauz Khas Market and Khan Market

Physical Attributes: Public Transport

Figure 5. Public Transport Assessment

Inference: For both the markets there are no provisions made for people with vision
disabilities. The only probable way they can access the station is with the help of a
caretaker. Though, at the same time, adequate provisions are made for wheelchair
users to independently access the station.

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Physical Attributes: Footpath

Figure 6. Hauz Khas Market; Wayfinding Route; Footpath Barriers

Figure 7. Khan Market; Wayfinding Route; Footpath Barriers

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Inference: Most of the interfaces between the metro station entrance to the footpath
or with houses and shops on the way the footpaths are broken or there is an
absence of kerb ramps.
Hauz Khas Market- There is a direct correlation between the land use of spaces
and the state of the footpaths. Most of the footpaths and kerb ramps are broken or
completely missing near residential areas since people make use of the spaces in
front of their houses to park personal vehicles and as house entrances.
Khan Market- Wayfinding route consists of mostly shops and institutions and hence
the major barriers faced are the presence of vendors and shop extensions taking
up the designated footpath space.

Physical Attributes: Pedestrian Crossing

Figure 8. Hauz Khas Market; Pedestrian Crossing

It can be inferred from three physical elements (public transport, footpath and
pedestrian crossing) and the nature of barriers present, that the major predicament
isn’t just the absence of facilities but rather the fact that most of these facilities are
broken and encroached, forcing people to walk on the road instead.

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Sensorial Attributes

Figure 9. Sensorial Attributes; Olfactory Cues

There are a number of permanent smells and sounds of traffic junctions, shops,
parks that can serve as cues to navigate the built environment better. For a
frequently undertaken route these smells and sounds can help create a cognitive
image map of the route where the engaged senses can give a cue of the
approaching nature of the built space.

Figure 10. Sensorial Attributes; Auditory Cues

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Though the available guidelines do not acknowledge these sensorial perceptions as

a mandate yet, there is a possibility that such a documentation can help in situating
an olfactory or auditory cue vis-à-vis the existing environment such as fountains,
sounds of chirping birds, etc. These cues coupled with the built environment can
serve as a directional tool for navigation and wayfinding for the differently-abled.

Market Premise
The market premise consists of the outdoor stretch including the street and the
footpath from the entrance of the market to its exit. In the cases studies
documented, both markets have designed parking facilities as well, which have
been considered as a parameter.

Figure 11. Market Premise Parameters

Figure 12. Accessibility Checklist Derivation for Market Premise Scale

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Figure 13. Market Premise for Hauz Khas Market and Khan Market

Physical Attributes: Footpath

Figure 14. Barriers in Part Plan of Hauz Khas Market

The barriers in the route from the entrance to the market to the shop entrances
reveal a plethora of informal activities which go beyond the available guidelines.
For example, in Hauz Khas Market, though adequate width of footpath is available
in few parts, it is heavily encroached due to vendor activities, shop extensions,
vehicles parked on footpaths, manholes and grates etc.

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Physical Attributes: Parking facilities

Figure 15. Parking Facilities for Hauz Khas and Khan Market

None of the markets have any spots reserved for the differently-abled. In addition to
that non-designated on street parking due to lack of parking facilities in general,
further serve as a barrier to accessibility. It takes up the street space as well as
hinders movement in accessing the footpath and maintains visibility with the rest of
the surroundings especially if one is on a wheelchair.
The role of design in the scenario is limited to and by the space requirements of the
built form. Even though there is available space to accommodate for human
mobility with vendors and other informal setups, together they all serve as a barrier
in the built environment making it impossible for a person to move through to reach
a shop.

Threshold
The threshold spaces refer to the interface between the footpath or the street to the
shop entrance. These do not include the indoor environment of the various shops in
the market but rather the assessment of only the entrance to the shop.

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Figure 16. Threshold Parameters

Figure 17. Accessibility Checklist

For the interface between the footpath and the shop entrance all the identified
elements of even surfaces, railings, accessible doors and ramps are present in very
few shops especially taking the example of Khan market. Being completely
commercialised it has restaurants and shops at the upper floors as well. For all the
stores in the market, hardly any of them provides for any accessible lifts or other
resources that allow the differently abled to even enter the shops. It clearly
illustrates that it is highly inaccessible.

Conclusion
There is no such thing as an average user. The plethora of barriers present in the
existing environment is a clear indication that in the Indian context, public spaces
are inaccessible and dissuade independent mobility for the differently abled. There
is a dire need to question the commonly assumed notions of ability and disability. In
the design discourse, we should critically introspect what is the after effect of
viewing provision of accessible ramps, lifts and footpaths as an ‘option’.
Documentation of barriers through the lens of a particular user group i.e. differently
abled allows one to see clearly the inadequacies in public spaces being equitable
for all. The current public spaces as can be observed in the context of the research,
creates disparity through design, forcing differently abled to confine themselves
within the four walls of a building or a house.
Though the thesis aims to look at the documentation of barriers in the physical
environment within the design discourse, there is a realisation that the urban issue
of accessibility and mobility goes beyond just the reins of design. Assessing the

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existing state of markets in relation to the available design guidelines indicates that
there is poor implementation and maintenance despite the availability of
harmonised design guidelines. Multisensory architecture adds meaningful layers to
one’s spatiotemporal experience of architecture creating a better understanding of
their physical infrastructure. Mapping of the sensorial attributes reveals both aids
and barriers in the given environment serving as an important wayfinding tool.
To provide an inclusive environment, case specific documentation of barriers and
design solutions with respect to the same as mitigation strategies should be
developed rather than direct implementation of the given guidelines.

Acknowledgements: The undertaken study is an excerpt from

my undergraduate research thesis at CEPT University . I am
grateful to Prof. Sachin Soni for guiding the research and my
alma mater CEPT University for giving me the opportunity to
conduct this research.

References
Accessibility Design Manual : 1-Urban Designs : 3-Street Furniture.(n.d.). Retrieved
September 28, 2020, from [Link] designm/AD1-
[Link]
Agarwal, A. (2012). Public Transport: Accessible and Inclusive. Retrieved February 20,
2021,from [Link]
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Boys, J. (2020, July 21). Doing Disability Differently. Retrieved September 28, 2020,
from [Link]
Disability and ability: Towards a new understanding. (2017,November 03). Retrieved
September 28, 2020, from [Link]
and-ability-towards-new-understanding
Disability Divides in India: Evidence from the 2011 Census. Retrieved September 28,
2020, from [Link]
Gehl Institute. (2018, June). Inclusive Healthy Spaces. Retrieved April, 2021, from
[Link] Gehl-
[Link]
India, T. (2018, December 19). Play for all: Chennai gets first disabled-friendly park for
children. Retrieved September 28, 2020, from [Link]
friendly-children-park-chennai
Ministry of Urban Development. (2016). Harmonised Guidelines and Space Standards
forBarrier Free Built Environment for Persons with Disabilities and Elderly Persons.
Retrieved January 15, 2021, from
[Link]
Orgi. (n.d.). Disabled Population. Retrieved September 28, 2020, from
[Link]
Saikia, N., Bora, J., Jasilionis, D., & Shkolnikov, V. (2016, August 4). Disability Divides
in India: Evidence from the 2011 Census. Retrieved September 28, 2020, from
[Link]
Taylor and Francis. (2018). Designing with Smell: Practices, Techniques and
Challenges. PDF Drive. [Link]
[Link]

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UNNATI. (2014, December). Design Manual for a Barrier-Free Built Environment.

Retrieved January 15, 2021, from [Link] free-
[Link]
Welcome to [Link]. (n.d.). Retrieved October 14, 2020, from
[Link]
When Complete Streets Help People with Disabilities. (2020, March 09). Retrieved
August 11, 2020, from [Link]
disabled/
World Health Organization. (2011). World Report on Disability. World Health
Organization. [Link]

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 INCLUDE 2022. Unheard Voices
11th Inclusive Design Conference
Helen Hamlyn Centre for Design
Royal College of Art London, UK
22-23 September, 2022

Design and Implementation of Self-

adapting Toilets for Semi-public
Environments
Reflections on transferring a home solution to semi-public
places

Paul PANEK*
Applied Assistive Technologies, HCI Group, TU Wien, Vienna, Austria
Peter MAYER
Applied Assistive Technologies, HCI Group, TU Wien, Vienna, Austria

Older people and persons with disabilities may face significant challenges while
using a toilet. While assistive toilets at home can be tailored explicitly before or
during installation to meet the individual needs and wishes, this approach fails
in semi-public settings (restrooms in, e.g. restaurants, event locations or
community centres). In this case, the users and their needs are not known
beforehand, and thus the toilet needs to be capable of adapting itself. Based
on previous successful Research and Technical Development work on
prototyping an Information and Communication Technology -enhanced toilet
for home use, the transfer of this concept and the necessary conceptual
extensions for the out-of-home setting are outlined and reflected. Current
findings show the wide variety of user needs and preferences and the different
levels of technological affinity. The new toilet prototype system thus can provide
different ways of physical support during toilet use and different levels of
interaction, from basic to advanced, from non-complex passive use for novice
users to more advanced functions for more experienced users. For example, it
can retrieve previously saved settings, estimate height and detect falls based
on 3D technology. A field test of the final prototype is being prepared for late
2022 to assess actual benefits.

Keywords: toilet; adaptability; user interaction; ambient assisted living

* Contact: Paul Panek | e-mail: [Link]@[Link]

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PAUL PANEK and PETER MAYER

Introduction and Aim

Even in Europe, the toilet situation for a significant part of the population is
unsatisfactory. Astonishingly, in contrast to other areas of daily life, there has been
little progress for disabled or older people in technical support for easier toilet use.
However, this is a daily activity, and the problems are well known (Bichard and
Hanson, 2005), (Hanson, 2007), (Kira, 1976), (Molenbroek, 2011).
Some advances beyond the simple Western-type toilet can be found in the home
area: in the luxury segment with high-end electronic designs including biometric
analysis and using a smart home toilet as a personal health assistant (Jaglarz,
2021), but also increasingly by basic stand-up support systems for home use and
shower (bidet) devices (Jaglarz and Charytonowicz, 2015). In the area of public
toilets, recently, the Changing Places (Changing, 2022) initiative for upgrading toilet
rooms with changing benches and hoists for adults has emerged in the UK and very
recently also in Germany (Toiletten für alle, 2022).
By default, for accessible toilets, it is mandatory to offer a fixed (raised) toilet height,
which, as a compromise, does not meet the individual needs from body size,
wheelchair use, and physical ability to stand up. This makes it difficult or even
impossible for some people to use public toilets without personal assistance. The
inappropriate height poses significant risks during autonomous use. Always having
an accompanying attendant with you when leaving the house or asking other
people for help in the toilet is certainly uncomfortable.
In the “iToilet” project (iToilet, 2018), we first worked on the idea of more intelligent,
physically assistive toilets for disabled or older people at home. We can show the
positive results from field tests with individual users whose needs, wishes and
preferences are known. The semi-public (out of home) area poses additional
difficulties since the usual method of customising the stand-up aid for each
individual user (often before installation) is not possible. In contrast, in this area, a
wide variety of unknown users must be served with excellent robustness. We set
out to study a concept for such physically assistive products in the ”Toilet for me
too” (T4ME2) follow-up project (T4ME2, 2022).
In other projects, we are also working on the cognitive support of people with
dementia in the toilet area, another important field of research with major
challenges in many areas (Ballester, 2022), (Panek, 2020). In the paper at hand,
our focus is on the provision of physical support.
We also want to ensure that autonomous use without a support person being
present does not compromise safety, so we included a component capable of
detecting falls and emergencies and triggering automatic alarms (Lumetzberger,
2021) while respecting privacy of the user (Mucha and Kampel, 2022).
Our vision is to use modern Information and Communications Technology (ICT) in
the form of innovative ICT-enhanced and safe toilet systems that adapt to the
individual needs of users and enable older people and people with disabilities to
participate more in societal life (Güldenpfennig, 2019), (Mayer, 2019), (Mayer and
Panek, 2022), (Panek, 2017).
In this paper, we present findings from research activities and then reflect on the
transfer of physically supporting toilet systems from home settings (project iToilet)
to semi-public locations (project T4ME2) and the emerging design challenges.

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Setting the Scene

Postures during toilet use

Many older but also physically disabled people report difficulties in the task of
standing up from chairs (Chikai, 2021) and usual toilet seats (Hanson, 2007) (Kira,
1976). Therefore accessible (“disabled”) toilets come with a higher toilet seat as a
compromise, allowing easier stand-up for many people. This raised height during
sitting on the other side weakens the stability of people with reduced strength as
the feet (especially of people with shorter limbs) may not be flat on the floor to
support the weight for stable sitting. At the same time on the other side, a too high
position during toilet use can cause difficulties in defecation because of well-known
biological principles (Sikirov, 2003). For sitting down, it also might be experienced
as safer and more comfortable when the seat is in a relatively high position not
requiring a large distance until the sitting position is reached.
The ideal toilet height thus differs for the different use phases (sit down, sitting,
stand-up) and for different people, for most a low position is good for defecation
and stable sitting but a higher position is helpful for easier stand-up.

Toilet stand-up supports and lift devices

On the market, we find several commercial devices for home use. For moving the
toilet seat into the required position two methods are in use:
- A “chair” type construction, which can be simply put over an existing toilet
bowl as an add-on. Here only the seat moves, not the bowl (see Figure 1).
- A wall-mounted construction, which replaces conventional toilet bowls and
lifts the bowl (see Figure 2).
Some devices can only adjust the height (no inclination or “tilt”), seat always
horizontal, “vertical” type), most chair type devices provide a combined height and
tilt adjustment (fixed relation, especially “chair” type devices, “diagonal” type), only a
few devices support the fully independent choice of height and tilt (Santis, A.S.T.).
Control of the height and tilt changes is generally provided in the form of physical
buttons which offer simple manual “higher” and “lower” operations within the
mechanical limits. Some devices can also be ordered with special remote control,
e.g. for operation by foot.

Figure 1. Typical “chair type” devices: Santis R2D2, Economic Holland Aerolet, Solo toilet lift

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Figure 2. Typical wall-mounted lift devices: Pressalit WC Lifter, Santis Silvercare, A.S.T. Lift WC

Research results on situation and needs

Users were involved via the user organisations participating in the projects, a mixed
method approach was used for the study design (Mayer and Panek, 2017), (Pilissy,
2017), (Verburgt, 2021) combining qualitative and quantitative methods (e.g.
interviews, questionnaires, online polls, focus groups). Main research questions
were to explore the most important difficulties users do face when having to use
existing toilets, the most wished / needed functionalities for better suitable toilets
and the satisfaction with the tested innovative prototype systems.
Feedback collected during the iToilet project (involving visitors of an MS day care
centre and patients of a rehabilitation clinic) confirmed that people are having many
problems using standard and even barrier-free toilets when on their own (Figure 3).

Summarized Total Problems [rated 1 - 5]

stable sitting

hygiene and cleaning

sit down

toilet height

wheelchar transfer

stand up

0 1 1 2 2 3 3 4 4 5 5

Figure 3. Summarised average ratings (1=low to 5=high) on toilet problems by all 74 primary,
secondary and tertiary users (patients of a rehabilitation clinic in Hungary and visitors of an MS day
care centre in Austria (Pilissy, 2017)

These users finally tested an iToilet prototype and confirmed the usefulness
(Figure 4) of the individual physical support (Fazekas, 2019).

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Rated Usefulness of Prototype (% of 50 primary users)

sit-down/stand-up support

emergency/fall detection

flushing by button

shower (bidet) function

0 10 20 30 40 50 60 70 80 90 100

Figure 4. Total usefulness ratings for main selected functions by 50 primary users of the final iToilet
prototype in Hungary (rehabilitation clinic) and Austria (MS day care centre). Opinions on bidet
function in Austria were mixed while highly appreciated in Hungary.

In the current T4ME2 project, primary and secondary users in several European
countries were asked to rate the many difficulties they are facing with the existing
toilet infrastructure when outside the home, leading to a high amount of people
stating that the lack of appropriate toilets keeps them from visiting public spaces
and thus limiting them in their social activities (Figure 5).

Usage and Availability of Accessible Public Toilets [%]

insufficient

not clean

lack

usage

0 10 20 30 40 50 60 70 80 90 100

Figure 5. The percentage of usage and suitedness of accessible public toilets from 154 answers in an
online poll in Austria, Belgium and the Netherlands (T4ME2, 2022), (Verburgt, 2021)

Detailed in-depth interviews then were performed with 61 primary users to learn
more about their needs and opinions on semi-public toilets and the usefulness of
functions (Figure 6).

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Importance Ranking [% of 61 primary users]

Shower WC

Height Lift

Emergency detection

Hygiene

0 20 40 60 80 100

Figure 6. Importance ranking of functions from 61 interviews with primary users

(Verburgt, 2021)

Many comments were also received on missing items in most toilet rooms, like
adjustable mirrors, wash basins and wastebaskets, showing how little the usual
barrier-free toilets fit the needs.

Reflection on Key Aspects

Smart adaptability
The variety of users in the semi-public area with their individual requirements calls
for provisions in adapting the system to the preferences and needs of the users as
much as possible for each current user instead of just one before installation.
Thus, the system should comprise means to get information about the users, their
behaviour, and to estimate their needs. Communication between the system
components should allow adding further optional features in a modular way making
the system open for future enhancements also by third parties.
A flexible concept should also allow composing different solutions to fit market
needs, especially also cost-related aspects.

Tests with a functional prototype

With the T4ME2 prototype 1 (PT1) we set out to demonstrate to users the different
possibilities under supervision by researchers. With this we also wanted to react to
the widespread lack of awareness about already existing technology. This prototype
was a mobile chair-like construction (similar to those in Figure 1) to ease setup and
testing which nevertheless provided new functional abilities, especially independent
height and tilt adjustment, but still lacked a nice design (like cover). A smart 3D
sensor (Lumetzberger, 2021) for detecting presence, position and body size of
users allows to detect falls and general emergency situations like extended
presence and completes the T4ME2 physical support by safety measures. The PT1
prototype represented all basically envisaged features.

Complexity and feeling of control and trust

Providing many ways of adaptation also brings the need to offer appropriate means
of control. The classic way to add a dedicated button for every function quickly

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leads to unmanageable complexity of the user interface for many users, especially
older users who are unfamiliar with modern technological concepts, discouraging
them from touching the controls. Some users prefer a “one button per function” fully
manual interface over too much automatism, on the other hand, automated
reactions of the system relieve the user from complexity and provide more comfort.
At the beginning of the PT1 tests, many users expressed concerns about
unintentionally pressing buttons because they initially were scared by the technical
appearance of the unfamiliar technology. Many users expressed fear of losing
control because they doubted to be fast enough to stop unwanted movement when
needed and therefore being moved to positions where they might lose contact of
their feet with the floor, causing instability. But on the other hand, we also received
suggestions that sensors could care automatically for individually appropriate
positions. Later all users learned to control positions of the toilet quite well.
To feel safe during the use of the support system, the user has to develop trust in
the underlying algorithms and experience and understand sufficiently the behaviour
and reactions of the system. This definitely is a challenge given the wide range of
user requirements which requires compromises.
As a major consequence in order not to scare some (mostly first-time) users, it was
decided to avoid any direct user noticeable automation and complexity and use
smart algorithms only in the background e.g. for pre-setting the stand-up and sitting
positions which then can be intentionally activated with simple and clear commands
– by those users who already got familiar with how to use it.
The PT1 test also underlined the benefit of physical prototypes for research towards
new features not yet available in the market with users having hands-on
experience, instead of only asking theoretical questions.

Designing functional complexity and intentional feature unlocking

During a co-design exercise with users, the design and number of buttons for the
remote control were worked out (Figure 7), resulting in a layout with 8 buttons in
total.
There are separate buttons for changing height and tilt. The users concluded that
this would be the best compromise between too many buttons and missing options.
Every button press is confirmed by the LED on top lighting up and a beep if the
command is accepted by the system.
It was decided that the default state of the system should be passive like normal
accessible toilets. In this state, only the FLUSH and SOS functions should be
available meaning no accidental activation of movement can occur.
To unlock the movement and shower functions, an intentional signal by the user is
required showing that s/he wants to make use of and is aware of the functions.
As there are no dedicated buttons for this, the activation option on the hand control
is implemented as a long press on the STOP button. A beep signal confirms the
activation, and then the user manually may make use of all functionality.
Additional activation options are available when the user presents preferences to
the system, either by using an RFID tag or a smartphone app. The activation can
comprise just the unlocking, similar to using the long press of the STOP button or
also communicate preferences for the positions for the sit-down, stand-up and
sitting by pre-stored values.
In the case of values given by the user for the main use positions, the movement
buttons for the height also offer to go to the sitting and stand-up positions with just a

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PAUL PANEK and PETER MAYER

short button click instead of having to press the button until the required position is
reached (similar to windows in cars).

Figure 7. Prototype of the hand control (left) based on findings from co-design activities carried out in
3 European countries (middle and right)

Another option provided by the 3D sensor of the system (which detects falls and
emergencies) is to have the system estimate from a user’s body size (and
wheelchair use) the best positions without the need to use a tag or smartphone.
After activation by the long press of the STOP button, the short click to go to the
estimated positions is also available.
Of course, in any activation state, the STOP button always will stop any movement,
and the usual manual adjustment of positions is always possible.
After a user has left, the system always returns to the passive state and the default
position. Hence, every newly entering user finds the toilet in the usual position like
every regular accessible toilet.

Hygiene and cleaning

From all research results, we see that users and stakeholders would strongly
welcome solutions to keep the toilet – especially the seat - clean and technologies
to support cleaning services. Possible solutions to keep toilets as clean as possible
for all users range from the use of special coatings or seat material, also with
antibacterial effect, to self-cleaning seats or disinfection by sprays or UV-C light
after every user.
For our system concept, we decided to foresee a combination of special coating,
UV-C disinfection (Jaglarz, 2020), monitoring of air quality (Orza, 2021) and
estimation of usage frequency.
Many users also prefer to use a bidet shower function for their personal hygiene
after use of the toilet over toilet paper because they find it difficult to reach back for
cleaning or to fetch the toilet paper, others do not like it. For reasons of costs we
decided to implement a shower seat.

Ethics
Our work is based on the strong involvement of often vulnerable users (Mayer and
Panek, 2017) in the taboo area of going to the toilet, which makes strict compliance
with ethical guidelines (Dantas, 2020), (Höllebrand and Oppenauer, 2020) and the
establishment of a correspondingly well-founded interdisciplinary work (Zagler,

128 INCLUDE 2022. Unheard Voices

 Design and Implementation of Self-adapting Toilets for Semi-public Environments

2008) indispensable. In the T4ME2 project, we established an ethics working group

and advisory panel. In the iToilet project, we actively used tools such as the
MEESTAR instrument (Manzeschke, 2015), which has proven to be very beneficial
(Panek and Mayer, 2018).

Discussion of Differences between Home and Semi-

public Environment
Looking at the user feedback in our projects (Fazekas, 2019), (Güldenpfennig,
2019), (Verburgt, 2021) we can conclude that the base idea of physical support is
seen as helpful by a huge majority if the technology behind it is well explained.
Users are even willing to use advanced functions like automatic position changes
provided the user interface is straightforward, and the system is felt to be reliable.
In the example of the independent tilt function, it can be seen that unfamiliar
concepts often are first not considered helpful and consequently not tried out. Once
the users experience the different functions, they get interested in trying out
different settings and quickly adopt strategies on how they could make the best use
for themselves – but also start to imagine how useful it could be for others.
In the home environment, the so-found ideal operating principle can be easily
implemented for every user. Special requirements of e.g. wheelchair users or users
with low strength in the lower limbs can be taken into consideration and individual
needs on the user interface can be fulfilled. Training can be individually tailored.
This is similar in institutional settings.
If we go to the semi-public area we not only get an even broader potential user
range but a new problem because of the to-be expected first-time users without
training. The anxiety to use unknown functions and “machinery” which is looking
complex here must not be underestimated, as seen during the PT1 tests.
The easy conclusion which might be drawn is to care for a nice non-technical
design and limit the functions to only a few manually operated height change
options like offered by simple commercial devices for home use, which is not
suitable for people with different body sizes and properties. Some people not able
to continuously operate manual buttons for the time needed to move the seat up
could be prevented from making comfortable use, some would simply expect easy
ways of moving to the main use positions fitting their needs.
This means that in one device, we would need a very simple solution for some,
especially novice users, without visible complexity and scaring autonomous
behaviour, and options for advanced functions without an extra complex-looking
interface for more experienced users.
During business-related work with stakeholders, it became quite clear that costs
also play an essential role in the adoption of smart toilets as usually only the
mandatory investments into accessible semi-public toilets are taken if no clear
return on investment (ROI) can be shown by offering advanced versions.

Conclusions and Outlook

The results in the iToilet and T4ME2 projects clearly show how helpful physical
support by technology on the toilet can be for many disabled or older adults and
that, in general, potential users and stakeholders are open to the idea, but at the
same time, how demanding the task of developing such a system gets compared to

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PAUL PANEK and PETER MAYER

solutions for home use. The most plausible approach seems to combine modified
existing components of different manufacturers together with the required new
developments for smart integration.
The adaptability to the broad user range requires many different, partly
contradicting functions that cannot be active altogether at any time for every user.
By involving users in the test of a first prototype and co-design activities, we came
up with a concept which allows providing non-complex passive use to novice users
while advanced users can choose to make use of additional functionality and
provide preferences.

Figure 8. The final T4ME2 prototype 2 (PT2) with some of its main components: A wall-mounted ICT-
enhanced motorised lift toilet (with shower seat add-on and built-in air quality sensor), an 8-buttons
hand control, RFID tags (e.g. for recalling pre-stored individual settings) and a smart and privacy-
aware 3D sensor for safety and presence detection. See (T4ME2 virtual room, 2022) for a clickable
online demonstration of the PT2 and the whole toilet room

In the current T4ME2 project the final prototypes (Figure 8) implementing the
concepts presented above will soon be delivered to three test sites for the final real-
life user trials. We expect to get rich results on how the prototypes prove in practice.
From this, our business partners will develop their exploitation strategy, which could
lead to better accessible toilets in the semi-public area in the future.

Acknowledgements: We are grateful for valuable contributions

from users and stakeholders from several European countries.
The research leading to these results is co-financed by the
European Union and national authorities FFG/BMK, ZONMW,
VLAIO, UEFSCDI, NCRD, and NKFIH as project AAL-2019-6-
116-CP (T4ME2 project). For consortium partners see
[Link]

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 INCLUDE 2022. Unheard Voices
11th Inclusive Design Conference
Helen Hamlyn Centre for Design
Royal College of Art London, UK
22-23 September, 2022

Healthy and Inclusive

Neighbourhoods
A theoretical framework for hearing excluded city voices

Daniele BUSCIANTELLA-RICCI*
Innovation in Design & Engineering Lab (IDEE Lab), Department of Architecture,
University of Florence, Florence, Italy
Sara VIVIANI
Innovation in Design & Engineering Lab (IDEE Lab), Department of Architecture,
University of Florence, Florence, Italy
Kiana KIANFAR
Innovation in Design & Engineering Lab (IDEE Lab), Department of Architecture,
University of Florence, Florence, Italy
Alessandra RINALDI
Innovation in Design & Engineering Lab (IDEE Lab), Department of Architecture,
University of Florence, Florence, Italy

The paper presents a ‘Design for Inclusion’ framework, developed for an

ongoing action-research project implemented at a local level in Italy. The main
goal of the research project is to define design strategies and scenarios for
building healthy and inclusive neighbourhoods by co-creating two case studies
with local communities of an Italian town. The design team defined a theoretical
framework from an inclusion perspective, with respect to the urban furniture
systems, accessories and the related services. Therefore, the paper reflects on
the contribution of ‘Design for Inclusion’ approaches within urban health
references. The result is a theoretical framework that describes how to consider
‘Design for Inclusion’ within a healthy and inclusive neighbourhood for
designing and evaluating urban furniture systems and services. The conclusion
of the paper emphasises the need for integrating ‘Design for Inclusion’
knowledge with social inclusion models and approaches from different
perspectives such as those related to the development of inclusive services.
Finally, the paper provides reflections on how the presented framework may
improve the possibility to hear the diverse voices of the cities, from multiple
perspectives and by using design as a strategy for creating inclusive social
impacts.

Keywords: design for inclusion; healthy neighbourhoods; inclusive cities;

design for social inclusion

* Contact: Daniele Busciantella-Ricci | e-mail: [Link]@[Link]

133
DANIELE BUSCIANTELLA-RICCI, SARA VIVIANI, KIANA KIANFAR and ALESSANDRA RINALDI

Introduction
The paper presents a Design for Inclusion framework developed for an ongoing
action-research project implemented at a local level in Italy. The goal of the project
is defining design strategies and scenarios for building healthy and inclusive
neighbourhoods by co-creating two case studies with local communities of an
Italian town. The project is co-funded by a local foundation and the local university
(Department of Architecture), through a partnership between the regional health
system authority, the local municipality, a local public authority consortium engaged
in improving health and wellbeing, and a street furniture company. The project is
going to be developed by a multidisciplinary team in the same department by
involving researchers from the design (micro-scale), architecture (meso-scale) and
urban (macro-scale) disciplines. The project started in January 2022 by developing
literature review, theoretical frameworks, and desk research on three main topics
i.e. inclusion, proximity, and healthy lifestyles through the built environment.
Specifically, the design team defined a theoretical framework from an inclusion
perspective, with respect to the urban furniture systems, accessories and the
related services. Therefore, the paper reflects on the contribution of Design for
Inclusion approaches such as Inclusive Design (ID), Design for All (DfA), Universal
Design (UD), within urban health references and guidelines, including those that are
related to age-friendly cities, active and healthy ageing, active design, healthy
street strategies, social inclusion frameworks. The resulting theoretical framework
describes how to consider Design for Inclusion within a healthy and inclusive
neighbourhood for designing and evaluating urban furniture systems and services.
The conclusion of the paper emphasises the needs for integrating ID, DfA and UD
with social inclusion models and approaches from different perspectives such as
those related to the development of inclusive services. Finally, the paper provides
reflections on how the presented framework may improve the possibility to hear the
diverse voices of the cities, from multiple perspectives and by using design as a
strategy for creating inclusive social impact.

Research questions and intent

What research framework can be described in order to use the inclusion concept
within a project that needs to define determinants of healthy and inclusive
neighbourhoods? What kind of design approaches may contribute to it? What do
we mean for inclusion at the micro-scale of the neighbourhood? By following these
research questions, the scope of this work is introducing a theoretical framework for
addressing healthy and inclusive neighbourhoods from the micro-scale perspective
of the project. At the same time, we aim to understand how the Design for Inclusion
approaches can contribute within urban health frameworks.

Theoretical context and the related concepts

This work mainly refers to the built environment as determinants of health (World
Health Organization & UN-Habitat, 2020), urban health, and the Design for
Inclusion studies.

Urban health, the built environment and inclusion concepts

In general terms, studies on urban health and the built environment mainly suggest
the adoption of DfA and UD as strategies for reaching social wellbeing purposes
(Mosca, et al., 2018; Capolongo et al., 2020), or for working on health vulnerabilities

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 Healthy and Inclusive Neighbourhoods: A theoretical framework for hearing excluded city voices

by breaking physical barriers (Forsyth, Salomon and Smead, 2017). At the same
time, urban planning often refers to inclusion in terms of promotion of social
inclusion conditions through participation (see D'Onofrio and Trusiani, 2018) and
the generation of inclusive communities, and social interactions (see London,
2020). In parallel, some studies interpreted inclusion as an objective within specific
urban health perspectives such as the “streets for life” (Burton and Mitchell, 2006)
that envisions easy and enjoyable streets in the neighbourhoods; and the
“restorative cities” perspective (Roe and McCay, 2021), with the “inclusive city”
concept that suggests the usage of inclusive/universal design for creating inclusive
built environment. With a similar approach, the Gehl’s framework of “Inclusive
Healthy Places” (Gardner, Marpillero-Colomina and Begault, 2018) describes
inclusion as (i) an outcome that accommodates peoples’ diverse needs; (ii) a
process that recognizes values and people of a place; (iii) a tool that can eliminate
health inequities and create changes. Also, the ten principles for healthy place-
making (NHS, 2019) recommend to use ID principles (Commission for Architecture
and the Built Environment, 2006), Lifetime Neighbourhoods approach (Bevan and
Croucher, 2011), and Healthy Streets instruments and approaches (Transport for
London, 2017a; 2017b; Plowden, 2020) as resources for ensuring new places meet
the needs of everyone.
Finally, UD has been proposed as a reference among the criteria for assessing the
propensity of urban plans to promote Urban Health strategies (Buffoli et al., 2020).
Indeed, in Italy, UD and DfA have been recognised as references for social
inclusion criteria on urban health specifically related with (i) the usability of the
urban space in an equitable way by different categories of users; (ii) wayfinding
systems to be developed through different modes of communication (visual and
sensory); (iii) participation and involvement of the diverse social stakeholders (see
Ministero della Salute, 2021).

Active and healthy ageing, and inclusion

Active and healthy ageing is a challenge of the healthy and inclusive
neighbourhoods project, and a topic connected with the concept of Age Friendly
Cities (World Health Organization, 2007). From this perspective, ‘inclusion’ is seen
as a diffused strategy to be adopted for the elderly needs through age friendly-
environments determinants (i.e., physical environment, social environment,
municipal services) (World Health Organization, 2016). In this framework, UD is
considered as a key term that “refers to the design of products, environments,
programmes and services to be usable by all people” (World Health Organization,
2016).
Indeed, the age-friendly concept refers to UD and ID standards as the main
strategies for promoting participation and inclusion of elderly people through
inclusive built environments and processes (see World Health Organization, 2015a)
by also recognising the needs of the elderly as resources to design good
neighbourhoods for everyone (Gamme and Rafoss, 2020).
Often, in considering age-friendly issues, UD, ID and DfA are recognized as similar
concepts for addressing accessibility in the built environment (Chau and Jamei,
2021; Persson et al., 2015) with a problem-solving approach aimed at finding
standardized solutions for all. In contrast, Handler (2018) proposes an “alternative
age-friendly” perspective that moves away from problems solving approaches, such
as:
- From instrumental approaches that solve the function of a problem, to
“Design approaches that are speculative and open-ended in their nature”;
- From approaches that try to find universal solutions that meet most of the
needs regardless of age and ability, to context-specific approaches that “that

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DANIELE BUSCIANTELLA-RICCI, SARA VIVIANI, KIANA KIANFAR and ALESSANDRA RINALDI

work to reveal, build on or amplify the social connections and networks that
make up a given space”;
- From object-focused approaches, to “Design approaches that enable people
to empower themselves, or lay claim to a particular space, through the
design process itself”;
- From “solution-driven” approaches, to “creative interventions”.
In the specific terms of active and healthy ageing, all the indicators (or factors)
(World Health Organization, 2015b) relate to inclusion issues. Specifically, the
physical environment is a determinant of active ageing (World Health Organization,
2002) in terms of being a facilitator to improve people's ability (World Health
Organization, 2015b). The promotion of inclusive environments and the social
participation of the elderly - also through UD processes (World Health Organization,
2015b) - are the two key points about inclusion within the contemporary challenge
of active and healthy ageing (World Health Organization, 2020) that, in contribution
with attractiveness of the outdoor and street spaces can significantly contribute to
an active life of people (Cairncross, 2016).
As related with the concept of active and healthy life, the Active Design Guidelines
(Lee, 2012; The City of New York, 2010) - “as evidence-based and best practice
strategies for increasing physical activity in the design and construction of
neighborhoods, streets and buildings” (Lee, 2012) - propose to create a synergy
between active, sustainable and universal design. Traditionally, the US and the UK
perspectives on Design for Inclusion differs from the adoption of UD and ID
respectively. Indeed, the Active Design approach proposed in the UK from Sport
England (Sport England, 2015) about inclusion, refers to ID. Specifically, the first
principle of the Active Design approach is “Activity for all” by the means of
“Neighbourhoods, facilities and open spaces should be accessible to all users and
should support sport and physical activity across all ages” (Sport England, 2015).
Specifically, they refer to the adoption of the ID principles defined by Commission
for Architecture and the Built Environment (2006).

Social inclusion frameworks

From a wide perspective, the inclusion concept - in terms of social
inclusion/exclusion - needs to be addressed as a dynamic and multidimensional
concept where social, cultural, economic, political factors affect inclusion/exclusions
(Levitas, et al., 2007; Popay, et al., 2008; United Nations; 2016; Taket, et al.,
2014a). These dimensions have also been discussed by how they may fit on design
domains and approaches related to inclusion (see Busciantella-Ricci, Rinaldi and
Tosi 2019; Lim, Giacomin and Nickpour, 2021; Nickpour, Jordan and Dong, 2012;
Taket, et al., 2014a). Traditionally, studies on ID, UD and DfA gave more attention
to the physical and cognitive interaction of the people with their physical
environment. It means aiming at reaching multidimensional inclusion through
inclusive interventions made through the physical environment. Indeed, references
related to social inclusion and exclusion recognised UD as a strategy to promote a
socially inclusive environment (Taket, et al., 2014a; Taket et al., 2009). At the same
time, the conceptual model of social inclusion as developed by the Social Exclusion
Knowledge Network (SEKN) (Popay et al., 2008), identifies four dimensions (i.e.
economic, political, social, and cultural) of the power relationships that constitute
the continuum from inclusion to exclusion. It is a fundamental starting point for
interpreting a dynamic and multidimensional approach about inclusion that works at
all levels of our research project - including the micro-scale level. From a practical
perspective, it is also possible to frame five different sections of social inclusion
practices (revised from Taket et al., 2014b) that focus on policy (socially inclusive
policies), service design (including universal designed environments), service
delivery (attitudes and knowledge about inclusion), community life (including

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participatory governance and neighbourhood renewal), and research (socially

inclusive research).

Traditional Design for Inclusion approaches

From a design perspective, traditional design approaches related with inclusion - ID
(Clarkson and Coleman, 2015), DfA (European Institute for Design and Disability,
2004; Bendixen and Benktzon, 2015), and UD (Ostroff, 2011) - can be framed
under the common definition of Design for Inclusion (Reed and Monk, 2006; Di
Bucchianico, 2021) approaches. Essentially, common values on designing
accessible physical and digital contexts for all is what unites these approaches (see
Persson et al., 2015), even if they differ a little in terms of design principles,
methodologies and tools to be adopted for applying Design for Inclusion visions.
However, for the purposes of this paper, they can contribute with specific
characteristics, such as:
- about ID, the five design principles (Commission for Architecture and the
Built Environment, 2006), and the design processes, tools and
methodologies (Clarkson et al., 2007; Waller et al., 2015);
- about UD, the seven design principles (Story, 2011) also revised as eight
goals of UD (Steinfeld and Maisel, 2012);
- about DfA, the design philosophy related to socio-political and socio-cultural
drivers, and the enhancement of diversity as a value (cf. Bendixen and
Benktzon, 2015; Bandini Buti, 2018), and the recent standard EN
17161:20191 (European Committee for Standardization, 2019).

Emergent perspectives on design and inclusion

Also, with reference to the relationship between design and inclusion emergent
studies and reflections were introduced such as:
- “Psychosocially inclusive design” as the “provision via design interventions
of equal or equitable opportunities for a better quality of life for as many
people as possible, considering both psychological and social factors” (Lim,
Giacomin and Nickpour, 2021);
- Inclusive Service Design approach that merges ID, ergonomics and service
design (Aceves-Gonzalez, 2014; Aceves-Gonzalez, Cook, May, 2016);
- Design for Service Inclusion paradigm (Fisk et al., 2018);
- Evolving Inclusive Design framework, from the ID 1.0 (1994 - user
capabilities), 2.0 (2004 - interfaces, interactions, processes), ID 3.0 (2014 -
services and user diversity), ID 4.0 (2024 - systems and personalization
features) (Loughborough University, no date).

Proximity and inclusion

Proximity as one of the main topics of the project, has been interpreted according to
the Boschma’s (2005) dimensions. Also, it has been discussed by Manzini (2022)
by creating connections between proximity and social innovation as a starting point
for the city that cares. This recalls the Design for Social Innovation (Manzini, 2015;
Manzini, 2014) as a reference that allows to connect proximity and inclusion.
Specifically, inclusion in Design for Social Innovation is mostly related to
participation, co-design and empowerment of the people for social changes that

1
It enables an organisation to design, develop and provide products, goods and services with a DfA
approach; also see BS 7000-6:2005 (British Standards Institution, 2005), and ISO 9241-210:2019
(International Organization for Standardization, 2019).

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DANIELE BUSCIANTELLA-RICCI, SARA VIVIANI, KIANA KIANFAR and ALESSANDRA RINALDI

often start from a context-specific process. In other words, Design for Social
Innovation values present similarities with the Design for Inclusion values,
especially if interpreted with a concept that can be recognised as Design for Social
Inclusion (see Lee and Cassim, 2009; Ornelas and Gregory, 2009).
In summary, despite UD, DfA, and ID are recognised as the main design resources
for addressing physical accessibility and promoting participation and social
inclusion in urban health strategies, studies on social inclusion, on active and
healthy ageing, as well as emerging Design for Inclusion studies, are opening the
discussion for the need of a multidimensional perspective in combining inclusion
and design. Also, the integration with different perspectives of inclusion is needed
for addressing the risk of limiting the Design for Inclusion interventions to only
contributing with a problem-solving approach.

Methodological approach
A theoretical framework is a structure that summarises concepts and theories from
literature in order to create a synthesis of the theoretical background for interpreting
what will emerge from research activities (Kivunja, 2018). By following the Kivunja
(2018) guidelines, we developed a theoretical framework to use the inclusion
concept within the micro-scale level (design) in the project related with the healthy
and inclusive neighbourhoods.
Therefore, starting from the literature analysis we framed how the designs for
inclusion knowledge may effectively contribute to the main topics of the project. At
the same time, we integrated the framework with additional and emergent
perspectives for addressing the full complexity of the action research project.
Consequently, we compared the inclusion concepts with the position and the
meaning of the micro-scale of the project as interpreted through specific design
references that describe design domains (Jones, 2014), design contents (Young,
2008), and orders of design (Buchanan, 2001).

Results, discussion and conclusions

The main result is a theoretical framework (figure 1) we built in order to interpret the
inclusion concept for the micro-scale level on the healthy and inclusive
neighbourhoods’ project. Specifically, the framework is made up of three sections -
i.e. (i) ‘contexts’ that describe the contextualization of the framework, it focuses on
urban health strategies; (ii) ‘tools’ as design auxilium to interpret the inclusion
concept within design research fields of knowledge, it focuses on Design for
Inclusion instruments mainly represented by specific Design for Inclusion
approaches; (iii) ‘drivers’ as conceptual visions based on specific theories, it
focuses on social inclusion/exclusion frameworks. These three sections present
some nodes that occupy a secondary level of the framework and describe some
interconnections among the sections. They are (a) ‘standards’ we consider within
the framework, (b) ‘challenges’ of the project we build on the framework, (iii) the
involved ‘design disciplines’ that better describe the micro-scale level in design –
wich also resulted from the comparison with design domains (Jones, 2014), design
contents (Young, 2008), and orders of design (Buchanan, 2001).

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 Healthy and Inclusive Neighbourhoods: A theoretical framework for hearing excluded city voices

Figure 1. The theoretical framework about inclusion for the micro-scale of the healthy and inclusive
neighbourhoods’ project

This framework will guide the exploration and inclusion of the excluded city voices
by integrating the concepts we discussed in the framework in our action research
activities. Specifically, over the traditional Design for Inclusion approaches, we will
focus on specific integration in order to address the complexity required in the
multiscale approach, and the lack of specific design models for addressing the main
topics related with the healthy and inclusive neighbourhoods’ project. The
framework will specifically contribute on the following aspects both useful for the
objectives of the project, and as generalizable elements in Design for Inclusion
researches, it will:
- introduce a more holistic approach on addressing the inclusion concept from
a design perspective within a multiscale and complex project related to
urban health and social inclusion;
- integrate innovative approaches and concepts within a unique framework
related to design disciplines that also address intangible aspects such as
service design;
- allows to consider alternative possibilities to the problem-solving approach
with propositional, relational, enabling, experimental approaches (cf.
Persson et al., 2015);
- be used as a tool to systematically check how the different scales of the
project contribute to each other around the inclusion issues.
In general terms, this framework highlights the need of the Design for Inclusion to
integrate, on one hand a multidimensional approach through social inclusions
frameworks, and on the other hand considering and advancing emerging
approaches, ideas, and concepts such as the Inclusive Service Design, the ID 3.0
and 4.0, the Design for Service Inclusion. This integration can be particularly

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DANIELE BUSCIANTELLA-RICCI, SARA VIVIANI, KIANA KIANFAR and ALESSANDRA RINALDI

relevant in multiscale projects because the built environment of the micro-scale

level can be a touchpoint of complex intangible systems such as a service or a
community, and these new approaches may help in creating a systematic
framework for addressing these issues.
In addition, this work presents some limitations. Firstly, the framework is not the full
interpretation of the inclusion concept within the healthy and inclusive
neighbourhoods’ project. The evolution of this framework in collaboration with the
other scales of the project is one of the next steps related to this paper. Also, the
framework has been only validated within the internal design team (macro-scale) of
the project. A validation with the stakeholders’ group is needed. Finally, this work
presents an early version of the framework that needs iteration processes as well
as a validation on the field during co-design activities with key actors of the project.
We do not exclude that the framework can assume significant changes due to in-
field activities we will provide.

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 INCLUDE 2022. Unheard Voices
11th Inclusive Design Conference
Helen Hamlyn Centre for Design
Royal College of Art London, UK
22-23 September, 2022

Inclusive and Sustainable Fashion

Product-Service System for Evolving
Bodies during / after Pregnancy
Daria CASCIANI*
PhD, Politecnico di Milano – Design Department
Maria Antonieta SANDOVAL RAMIREZ
Fashion Design Professional

Media and fashion systems have shaped ideal and stereotyped female bodies,
imposing an unattainable aesthetic image based on extreme slenderness,
perfection, and tone, thus causing social anxieties, and unhealthy self-relationships.
In 2019, Mental Health Foundation showed that 66% of UK women were affected
by body dissatisfaction due to their bodies’ changes during maternity.
This paper investigates mothers’ relation with their body image during/after
pregnancy through a user-centred design approach. We surveyed 97 mothers and
interviewed 2 perinatal psychologists and 2 body experts to understand methods of
confidence-building during pregnancy and experience with maternity clothes. Based
on the received feedback, we designed and empirically tested Nawale, an inclusive
fitting garment adaptable to female bodies during/after pregnancy via (i) flexible
auxetic textile patterns, (ii) lacing, and (iii) interlocking systems (connectors) from
laser-cutting technologies. Users can co-design the garments customising on body
shapes and preferences at the online virtual fashion platform. It allows users to
preview the custom garments in a virtual fitting room and set a networked on-
demand production.
The resulting project aims at (i) tackling body image change and dissatisfaction of
pregnant women, (ii) boosting self-confidence, and (iii) increasing diversity in
fashion, toward inclusivity, and social/environmental sustainability.

Keywords: fashion design; social sustainability; auxetic textile; product service

system design; inclusive design

* Contact: Daria Casciani | e-mail: darí[Link]@[Link]

145
DARIA CASCIANI and MARIA ANTONIETA SANDOVAL RAMIREZ

Introduction

Body image and dissatisfaction during/after pregnancy

Body dissatisfaction is a person’s negative thoughts and feelings about his or her
body (Grogan, 2016). It refers to the perceptions people have of their physical
appearance and the emotions caused by these perceptions. The media and society
promote the idealisation of slenderness and beauty portraiture and stipulate that
everything that manages to look like those beauty standards is good (Grogan,
2016). Thinspiration and fitspiration media contents contain guilt-inducing
messages regarding the weight of the body, fat stigmatisation, the presence of
objectifying phrases, and dieting messages (Cohen et al., 2019). These messages
change women’s perception of themselves by teaching them socially acceptable
ways in which they should behave. Therefore, women were found to have more
body dissatisfaction than men (Kostanski & Gullone, 1998), presenting
dissatisfaction with their bodies due to an idealised beauty benchmark that they
wanted to achieve (Charles and Kerr, 1986). Specialists have found that since the
age of eight years old women feel insecure about their bodies and that this feeling
lasts throughout all their life (Grogan, 2016).
Pregnancy and postpartum represent a critical risk period for developing and
exacerbating anxieties caused by body dissatisfaction (Johnson, et al., 2004).
During pregnancy, women are vulnerable to mood and anxiety disorders due to the
significant physical and emotional changes that occur during this period.
Pregnancy-related anxiety is associated with the fears and worries centred around
pregnancy (Bayrampour, et al., 2016). Women feel concerned about the process
and health of the unborn baby. Within this disorder, women can experience poor
psychological adjustment and self-care, low self-esteem, increased weight gain and
nausea, and negative views of motherhood. Even when they have a health reason
to not fulfill the beauty stereotypes, they are judged and pressured to return to their
previous shape as soon as possible to ensure to be a good mother (Malatzky,
2017). Earle (2003) found that women indicate three main concerns in relation to
their bodies: how they would look when their pregnancy began to show, where the
changes in their bodies would occur and how easy it would be to return to their old
shape. Furthermore, women indicate that they feel more concerned about their
bodies during the last trimester as compared to the onset of pregnancy and pre-
pregnant phase, particularly in the breast and the stomach (Breda et al., 2015).
Other alterations like stretch marks, acne, skin pigmentation, and varicose veins
cause serious problems of confidence that are generated mainly by a strong social
comparison created by the media and the friends and family nucleus (Dryer et
al.,2020), along with the fashion system producing standardised sizing clothes that
does not fit everybody (Grogan, 2016). Ogle et al. (2013) found that maternity
clothes were considered expensive, ugly, and unattractive, causing anxiety in
women because they symbolised someone that they did not want to be associated
with. Since clothes are considered a way to satisfy the individual, social and
physical human needs, as well as the cultural representations and art forms
(Kaiser, 1997), reflecting their identity and being directly linked to the way people
look and feel about their image (Tiggemann & Lacey, 2009), new clothing systems
should address the needs and concerns of pregnant women becuase they could
affect their personality and behaviours (Lennon et al., 2017).

146 INCLUDE 2022. Unheard Voices

 Inclusive and Sustainable Fashion Product-Service System for
Evolving Bodies during / after Pregnancy

Methodology of the research

Aim of the research

The research focused on creating a product-service system to promote mothers’
body satisfaction and reduce anxiety during/after pregnancy, meanwhile
implementing a circular fashion process to promote sustainable maternity products.
The aim is to explore and design a product-service system that can eliminate the
standardisation of sizes and reduce body dissatisfaction caused by clothes
anxieties. In addition, its aim is also to create a more inclusive service in which
users can feel integrated and where the body can be evaluated for what it can do
and not so much for its appearance. The system wants to promote the creation of
products that can be adjusted to the different stages of pregnancy, as well as the
customization of the garment so that women are in control. To define the
project/system requirements, two main research methodologies were adopted: (i)
user-centred research through qualitative and quantitative mixed research
strategies to understand the users’ fears and needs and their experiences during
pregnancy; (ii) material experimentation with research through design approach to
investigate how to implement flexible, adaptable, and sustainable solutions for
garment design through the application of new technologies such as laser-cutting
techniques.

Materials and Methods

1) User-centred research
1 quantitative/qualitative survey (28 questions in Spanish, Italian, and English) and
2 qualitative interviews were developed and administered online. The survey was
delivered to 97 women (11% pregnant women, 86% mothers at the time of the
survey; average age 35 years old; Nationality: 80% from Mexico, 15% from Italy,
1% from Brazil, 2% from Venezuela, 1% Colombia, and 1% Norway) to collect
experiences about: (i) body image during and after pregnancy, and (ii) women's
relationship with maternity products (clothes and accessories) on the current
market. The semi-structured interviews were directed to 2 perinatal psychologists
and 2 body experts (a nurse and yoga instructor and a massage therapist,
experienced in working with pregnant women) about (iii) methods to build
confidence. Data were collected and treated with the consent of the participants
and elaborated by aggregating and anonymizing the results.

2) Material experimentation
The empirical testing of laser-cutting technologies on fabrics materials was useful to
iteratively design and test flexible, adaptable, and sustainable garments based on
the zero-waste pattern-making logic to offer a custom, inclusive, circular service
that could be accessible worldwide. The experimentation focused on three different
adaptable solutions (e.g., auxetic structures, interlocking systems - connectors and
lacing) and was developed on Rasone (100% polyester woven fabric weigh 0.0186
gr/cm2), Mollettoni (65% polyester + 35% viscose non-woven fabric weight 0.0329
gr/cm2, and Cotton Neoprene (92% polyester + 8% spandex knit fabric weight
0.0385 gr/cm2).
Auxetic structures can expand and shrink in all directions when stretched and
compressed, thus adapting to the precise shape of the user’s body (Papadopoulou,
et al., 2017), creating comfortable and adaptable clothes for different maternity
stages (Hu, et al., 2019). For the research, 11 different auxetic structures were

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laser-cut into 10x10 cm synthetic fabrics swatches to test their behaviour in terms of
expandability and flexibility, aesthetic, texture, and manufacturing difficulty on a
three points scale (see Table 1). Swatches were also digitally tested using CLO3D
software with the intention to compare the physical and digital behaviours with the
intention to make them visible on an online platform.

Table 1. Evaluation criteria for the experiments of auxetic structures

Interlocking systems/connectors allow the creation of a modular design of parts that

can be detached, modified, relocated, and replaced for upgrading, repair, recycling,
or reuse (Gu, et al., 2009). This system decreases shipping pollution and impulses
local production. For the research, 19 different interlocking system samples were
designed, laser-cut, and tested to evaluate stretch resistance, aesthetic,
manufacturing difficulty, and assembly difficulty (on a three points scale) and to
select the most suitable ones to be applied on zero waste garments and
accessories (see table 2).

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Table 2. Evaluation criteria for the experiments of interlocking systems/connectors

Lacing is a fastening method used in clothes that allows garments adaptability to

new requirements, garments’ reuse when circumstances change in time (Gu, et al.,
2004), and opening adjustability (Sarina, 2022) to different bodies and sizes, in
particular for pregnant women (Rybarczyk, 2020). It was also used as a decorative
element in western ladies’ clothing of the 20th century (Rogers, 2020). In this
research, lacing technique was explored through the sole use of laser-cutting
techniques by developing a 10x10 cm sample of perforated holes with a constant
distance of 2x2cm spacing. Likewise, digital prototypes through CLO3D were made
to observe the size and the adequate distance of the perforations in different areas
of the body.

Results

Physical and psychological during/after pregnancy needs

60% of the surveyed women admitted having suffered insecurity about their
appearance during pregnancy and postpartum and fear of being unable to lose
weight. Most of them consider pregnancy as a body “deformation” that results in
discomfort and resignation. Despite this, they did not consider it necessary to take a
specific therapy to treat body dissatisfaction during pregnancy. However, they
perform physical activities such as walking to stay toned and do relaxation practices
such as yoga, stretching exercises, massage, and physiotherapies during
pregnancy and post-pregnancy. These practices belong to the functionality theory
(Wood-Barcalow et al., 2010). Women look for support groups of other mothers, in
family and outside (e.g., motherhood counseling). In relation to clothes, pregnant
women need maternity clothes that do not limit their movement. Current maternity
clothes and accessories are considered ugly, with a not-unique and customised
design, expensive and disposable: at childbirth, they are thrown away or donated.

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The experts argued that body dissatisfaction in women during pregnancy is linked
to the lack of knowledge and full awareness of what it means to have a baby. The
experts use functionality (Alleva & Tylka, 2020) to construct psychological
confidence and security and physical activity to decrease the feeling of anxiety. In
addition, they use the feminism theory (Peterson et al., 2006) to question gender
roles and to put patients’ expectations and problems into visible words. Experts
consider that it is essential to design functional tools to promote the bonds of
motherhood and to rebuild women’s new identities during and after pregnancy to
help them feel free and independent.

Figure 1. Physical and psychological needs emerged from the user-centred research

Connection, flexibility, and adaptability: empirical results

To respond to the emerging functionality and physical needs, a series of
experiments on materials and shapes were performed thanks to the use of laser-
cutting technologies to test the adaptability to movement, comfort, perfect fit, and
easiness of wear during and after maternity.
In particular, 11 auxetic structures were designed and tested to check
expandability, aesthetics, resistance, and difficulty/simplicity in laser-cutting (see
table 3). The expandability of auxetic structures depends on the design of the cuts
(bigger cuts, higher expansion) and materials (higher flexibility of the material,
higher expansion). The size of the cuts is also linked to the transparency that the
piece could have (larger cuts, wider openings, higher expansion, more
transparency). Several samples (e.g. hexagon) scored low due to the fragility of
joints derived from low cut tolerances. The digital and physical expansion of the
materials was not the same due to the impossibility of the CLO3d software to
simulate real behaviours. This means that physical samples are required to
understand the real behaviour of the auxetic structures to be further applied to the
visual representation of digital fabrics in the virtual world

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Table 3. Evaluation processes of auxetic figures

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Table 4. Evaluation processes of interlocking systems

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Table 4 (continued). Evaluation processes of interlocking systems

For the interlocking systems, we designed and tested 19 connector samples (see
table 4) on three different materials to test the stretch resistance, aesthetics,
functionality, ease of use, and manufacturing through laser-cutting. The stretch
resistance of the connectors derives from the fabric structure and the design of the

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lock. The best fabrics in terms of aesthetics and resistance present structure and
friction useful to maintain the shape and sustain a stronger locking system.
Furthermore, the more contact points an interlocking has, the less likely it is to
break, although it takes longer to assemble. Although it was observed that the
connectors composed of strings and slots were the best option for soft materials,
these also took more time to assemble. During the design process, it is necessary
to consider the tolerance of joints and material thickness, allowing friction and
resistance but also ease of assembly. On the samples, it was evident that the
interlocking system with connectors and slots on both sides worked better and had
better resistance than the ones with the connector on one side and slot on the other
(e.g. connector 4). Connectors work better on straight patterns than on curves (e.g.
connector 17), since deformations in the joints occur when there is an accumulation
of material and a pronounced curve (e.g. connectors 15, 16, 17). It is necessary to
calculate the precise distance of the connectors to create a more defined round
figure.
A physical sample and a digital sample of the lacing mechanism were developed
(see table 5) through laser cutting circles with different distances to create a grid
where a cord can cross and thus generate the adjustment of the garment. The test
showed that it is possible to realise the lacing fastener by a single production
process (laser cutting) and that this technique could be used in different parts of the
body without causing discomfort and unwanted alterations in the silhouette.
Likewise, the digital sample prototype with CLO3D showed that the circles could be
personalised and adjusted to the user's measurements and silhouette.

Table 5. Evaluation lacing mechanism

Inclusive and sustainable fashion product-service system for

evolving bodies during/after pregnancy
The previously carried out research was used to design Nawale, a product-service
system that allows pregnant women to customise garments based on their style
and particular body shape, changeable during different pregnancy stages. The
system is composed of (i) two adaptable zero-waste dresses that could be
personalised by the user thanks to a (ii) digital platform that allows sustainable on-
demand production.
The two dresses include both auxetic structures on the abdominal, central back,
and breast area that present more significant changes during pregnancy, and lacing
mechanisms were implemented on the front and back to make the garment's
adjustment easier. One of the dresses (Figure 2) could be produced on-demand
using the traditional approach of product manufactured and assembled in the
company workshop and sent to the clients once it’s finished. The second dress
(Figure 3) could be produced through networking on-demand production that relies
on digital drawings sent to the user to be produced by the worldwide network of

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fablab using laser-cutting and to be assembled by the user. This dress also
includes interlocking systems in place of sawing on the edges of the pattern to allow
the self-assembly of the piece at home by non-expert users.

Figure 2. Dress to be produced by traditional production without connectors

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Figure 3. Dress to be produced by networking production with connectors

Both dresses are based on a zero-waste design created by the Make/Use tool
(McQuillan, et al., 2018). This tool is adaptable to an extensive range of sizes and
can include vast body diversity (McQuillan, et al., 2018). The pattern and design of
the dresses are intended to be simple to be adaptable to different occasions. The
dresses were developed through virtual prototyping technology, using CLO3D
software that allows to test and modify the prototypes, visualise the garment fitting
through the different stages of the pregnancy, and could be also exploited to offer a
virtual tailoring experience on the service (Jankoska, 2021). We designed both
dresses to be produced by laser-cut technology that reduces the garment
production to only one step through a technology that is accessible worldwide in
Fablabs laboratories (Nayak & Padhye, 2016). These two features make the

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customization of the garments by the user feasible in terms of production costs and
product lifecycle management.
The traditional model of serial production of finished products is replaced by the on-
demand co-design model through a digital platform that allows a semi-finished
designed product to be modified, customised, and finished by the consumers
(Ambrosio & Vezzoli, 2019). Based on the user-centred research that highlighted
the need for women to search for alternatives to feel more comfortable when buying
clothes and accessories during pregnancy, we designed a user experience that
intends to improve the purchase experience through the personalization of the
product and the visualisation of the product on the user’s avatars. The user
experience consists of implementing a digital customer journey on a digital platform
(Figure 4) allowing the user to co-design (selecting the zero-waste dress of their
choice, choosing the type of production, and selecting predetermined alterations in
terms of colours, materials, auxetic structure typology), customise the garment
based on their measurements and preferences (through a questionnaire about their
measurements) visualise and test (on a digital personal avatar through a virtual
fitting session with the help of a real-time 3D rendered image) test and finally
produce the customised product in a traditional or networking modality.

Figure 4. Platform design to customize the dresses.

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Conclusion and Discussion

The study highlights the importance of producing adaptable, flexible, and
sustainable garments for pregnancy through an inclusive approach at the design
and manufacturing levels. The majority of surveyed women indicated the need of
finding evolutionary garments that could fit their bodies in every stage of the
pregnancy. The found alternatives such as oversized, loose, and shapeless
clothing were found to negatively influence their self-esteem and body appreciation.
The developed dresses with auxetic structures and lacing mechanisms can follow
body changes during/after pregnancy with the ability both to control the garment
and adjust the fabric during the different stages of pregnancy and also after, both
feeling comfortable and perfecting the fit to their dynamic body changes with an
excellent aesthetic appearance, thus allowing increased confidence and body
satisfaction.
The manufacturing and co-design service through the digital platform allows a more
democratic and inclusive process, allowing accessibility and customizability with a
certain degree of freedom. The platform helps to create a no discriminatory product
that includes the user as a cocreator toward a garment design and production that
can create an attachment between people and garment, thus ensuring the product
life extension (Maldini,2016). In addition to this, virtual size and fit platform
technologies can help women have a better customer experience, through an
interactive protected virtual space that allows custom fitting in a secure way,
contributing to feeling more comfortable and gaining confidence and self-esteem.
In terms of environmental sustainability, the adaptable design also reduces the
waste of clothes and prolongs their use not only during but also after pregnancy. In
addition to this, the implementation of connectors on maternity clothes can
decrease the ecological impact of the traditional production based on sewing and
accessories inclusions. Connectors help to disassemble the product easily (without
any mechanical or chemical process required) and also to eventually substitute
some parts with a modularity logic. However, real environmental sustainability can
be reached only when thinking in terms of systems, including innovative ways of
manufacturing and selling. Here the on-demand networking production is a winning
solution since it significantly allows a reduction of the garments’ impact on the
environment. On-demand self-production (Ambrosio & Vezzoli, 2019) minimises the
number of resources needed, the cost of production, packaging, transport, and the
waste from unsold finished goods. Furthermore, the diffused networking production
on micro-urban scales promotes social interaction in local communities and creates
local employment thanks to reshoring through a 0-km diffused production. However
networked production needs further to be studied to overcome design limitations,
logistics implementation, supply chain organisation, and users' involvement
feedback.

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11th Inclusive Design Conference
Helen Hamlyn Centre for Design
Royal College of Art London, UK
22-23 September, 2022

A Qualitative Analysis of the

Challenges for Women with Physical
Disabilities When Buying Fashion
Online and In-store
Yasmin KEATS*
Open Style Lab
Ellen FOWLES
Royal College of Art
Grace JUN
Open Style Lab & University of Georgia

The act of dressing and finding clothing that accommodates both style and
functional needs for many people with disabilities (PWD) is an arduous experience.
Consumers with disabilities have very limited opportunities in ready-to-wear clothing
to access functional yet attractive garments (Carroll and Gross, 2010; Bennet et al.,
2019). From navigating the shopping experience to identifying particular clothes,
access to accessible yet stylish clothing still remains a barrier to equality for PWD.
In response, this study identified the challenges when finding appropriate clothing
for women with varying physical disabilities that meet both functional and aesthetic
needs. Fifty semi-structured interviews with women with physical disabilities reveal
personal shopping experiences and the barriers to finding and wearing clothes. The
study was analysed using a thematic method with results that revealed the most
significant challenge when finding and wearing clothing were shoes (58%) and
trousers (53%). When purchasing clothing, most participants preferred to see and
feel the clothes physically; however, a majority expressed barriers to brick and
mortar shopping because of inaccessible changing rooms (52%), physical
exhaustion (40%), and problems accessing the store (22%). Finally, this study
presents suggestive improvements to the shopping and dressing experience that
contributes to raising awareness of fashion barriers faced by people with physical
disabilities.

Keywords: fashion; disability; user experience; inclusive design

* Contact: Yasmin Keats | e-mail: yasmin@[Link]

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Introduction
A person may have multiple disabilities, and many of our participants identified as
such. To better understand barriers throughout a shopping experience, our
research examines the online and offline challenges for women with physical
disabilities. An inaccessible shopping experience may include physical barriers in
store, or online websites that do not include accessibility app functionality.
Furthermore, social stigmas reinforce inaccessible shopping, for example,
assumptions that PWD do not shop for fashion. For PWD to be seen as valued
customers, they must be seen as customers. Visibility of PWD, therefore, needs to
be seen in all aspects of social and daily life to help normalise disability (Johnson
and Kennedy, 2020) - an experience that most of us are likely to experience at one
point in our lives, whether through injury, congenitally or old age (Seo and Fiore,
2016). For PWD, shopping usually starts with online research, to understand if a
store and the journey to get to the store is accessible and will have what they want
(Eskyté, 2019). When arriving at the store, barriers in accessing the physical store
(Swaine et al., 2014) include finding an accessible entrance (Wertans and Burch,
2022). Once in the store, navigating complicated store layouts with narrow aisles
can be hazardous. Finally, trying on clothing can be barred by inaccessible
changing rooms that have not considered needs for assistance or adjustable
seating. Due to challenges trying on clothing in stores, many participants prefered
to try items on at home. PWD who do not have independence when leaving their
home can find the returning process an arduous task. Online shopping poses many
of the same challenges when it comes to unwanted items, regardless if the clothing
meets the wearer's needs. From literature review, there is a lack of disability
garment shopping research. Therefore, our paper emphasises challenges in the
clothing shopping experience for women with physical disabilities.

Methods
Study Design & Participants
This is a qualitative study (Merriam and Tisdell, 2015) based on a grounded theory
approach (Strauss and Corbin, 1994). Fifty semi-structured interviews were
conducted with women with a range of physical disabilities ages 18-66.
Participants were predominantly from the US and were recruited through posts on
Facebook related to disability and mobility aid support groups. Written consent was
provided, and the interviews were conducted online, lasting between 20 to 70
minutes. The participants were asked about their experiences with finding and
wearing clothing, including questions about identity, fashion representation and
personal aspirations when it came to style and clothing.

Data Reduction
All interviews were video recorded and transcribed verbatim. They were reviewed
by two coders who did a content analysis, extracting quotes to identify high-
frequency themes. All quotes were placed in a shared database where a third party
analysed the content, identifying relevant themes and tagging each quote into three
themes, labelled as social, political, and product. All quotes relevant to the
shopping experience were reviewed a third time to find themes within this category,
and clustered according to recurring themes and topics. Themes included barriers
to shopping in-store and online, purchasing habits, as well as processes that
helped work around shopping challenges.

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Reflection and Review

After analysing all the data, a follow-up focus group was conducted where 14
individuals were split into four groups in order to share and discuss ‘favourite
brands ’ ‘how to improve the shopping experience
and ’ one another. All focus
with
groups were recorded and sessions transcribed into a combined list of shopping
improvement suggestions.

Results
In-store Shopping Experience
While there are benefits of made-to-order online shopping for PWD who have faced
barriers in the physical shopping experience, there is still a desire to experience
materials and fit in-person. Being able to try on, test, and physically interact with
garments gives consumers a more considered and accurate understanding of
products to then choose from. 30% of interviewees emphasised material concerns,
and 37% highlighted fit and sizing issues when searching for new clothing. This
data demonstrates two significant factors when choosing in-store experiences over
e-commerce options. However, there are still a variety of obstacles in physical retail
spaces for PWD.

Navigating the Store

The architecture and interior design of retail outlets was a topic that repeatedly
arose in the interviews and in literature (Goodrich and Ramsey, 2012; Kaufman-
Scarborough, 1999). “Some shops you can't even get into because it’s got a step.
It's not adapted for a wheelchair,” described an interviewee. Another participant
noted that a shop is“ not accessible if you have a gigantic rug right in front of your
doorway. I can't get enough leverage to get over it.” Architectural regulations such
as the US Americans with Disabilities Act (1990) (Bungartz, 2022) and the UK
Equality Act (2010) ([Link], 2020), are a significant step
forward for disability justice and accessible design of public space. Despite this
legal progress, there are loopholes and many establishments do not adhere to
these regulations. Steps, uneven flooring, revolving doors, and steep ramps are just
a few barriers that spatially segregate PWD from participating and being seen as
desirable consumers in shopping spaces. However, sliding doors, handrails and
working lifts are great examples of accessible architectural solutions (Norman,
1988).
Having room to navigate shops with ease is incredibly beneficial for multiple
consumers. For example, women bringing strollers may face aisle barriers when
shopping, similar to PWD when using a wheelchair. One interviewee explains the
stressful experience of shopping for clothing, “Compared to somewhere like a
bookstore or grocery store which have regimented, straight aisles of uniform width,
clothing stores have their garment rails laid out in a random, uneven way, which
makes it difficult to negotiate when using a wheelchair.” 18% of participants
mentioned similar frustrations when navigating in shops. Most stores are designed
to encourage product interaction, however, that usually entails mirrors and narrow
aisles, which can be confusing, tiring, and even hazardous for PWD. Additionally,
products are often placed out of reach and/or out of sight for those with visual
impairments, those who are seated and/or with a shorter build.

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Figure 1. The winding aisles of a shop floor

Changing Room
The study reveals 52% of participants highlighted the design and experience of in-
store changing rooms as another significant limitation when finding clothing. Trying
on garments is highly appealing when in-store shopping, but without functional
spaces to do so, this benefit becomes obsolete. “It’s really stressful if I go to a
store because their changing rooms don't have seating. There's no seating or the
seat is too low, or it's just a small stool like a pathetic little tiny dinky metal tin stool.
It’s not enough to hold my weight or anything else, it’s terrible,” describes one
interviewee. As well as a lack of appropriate seating options, changing rooms are
usually too small to fit assistive devices inside and don’t have bars for support. Due
to the lack of, poor design and misuse of disabled changing rooms, some PWD
have found inventive ways to operate around these limitations. One participant
explained that they “never try pants on, it's too hard. So I'll just bring a pair of pants
that I have that fit good, and then I'll compare them in the store. We'll hold them up
and compare the size and then I will usually buy them and bring them home, try
them on and if they don't fit right then I'll take them back.” While the participant
demonstrates a strategic shopping solution, this further increases the time and
energy spent shopping.

Figure 2. An accessible changing room with multiple handles and a long bench

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Assistance
Many people with disabilities usually bring a family member, friend, or carer with
them when shopping. 26% of the women interviewed needed assistance while
dressing. One participant stresses the need for physical support from others, “On a
rare occasion I will try things on in shops, but I then need two people to help
because you often cannot take the hoist into public places.” The ‘disability politics
of interdependence’ (Hamraie and Fritsch, 2019) is a practice used by PWD to
support each other through acts of care, such as shopping together. Another
interviewee describes this co-buying act in more detail, “My mother knows my
issues, and she knows what flatters me. If she is in a store and she finds something
that she knows will work for me, she will buy it.” Co-buying and co-dressing
strategies can be mutually supportive practices that have physical and emotional
benefits.
When shopping alone, PWD may have to rely on other people’s willingness and
availability to join them on shopping excursions in-store. Professional assistance is
a missed opportunity when shopping in person. Many participants discussed the
benefits of having experienced, knowledgeable and approachable retail staff that
can help when searching for clothing both in-store and online. Other than brand and
product knowledge, retail staff who have training in identifying functional and stylish
preferences for PWD is essential.

Social Stigma
Other than physical barriers in the built environment, social stigma and ableism also
poses challenges to in-person shopping for PWD. 35 out of 50 participant
responses mentioned the stigma associated with shopping which discourages them
from returning. One recurring negative social experience shared was people
staring, “Shopping is quite traumatising because people obviously stare, so that
makes it a bit uncomfortable. You don't really feel confident with the stuff you're
picking out because someone's staring at you.” Feelings of self-consciousness can
deter people from shopping in-person. Because of the multiple physical and
emotional barriers to in-person shopping, many PWD opt to order online, despite
the shortcomings in that process. If less PWD are seen in shops as desirable
consumers, ableism and lack of representation increases.

Exhaustion
A common response from the majority of participants was feeling physically and
emotionally drained. 40% of the people interviewed noted that they found the
shopping experience ‘tiring’, and 20% described it as ‘stressful -’“most of the time
shopping is not an enjoyable experience for people with disabilities, it’s more of a
job to find the right gear.” Unlike other clothing categories such as ‘maternity wear’
or ‘plus-size’, ‘adaptive ’
clothing hasn’t yet scaled in mainstream commercial
fashion industries. A lack of product options often force PWD to visit multiple stores.
One interviewee refers to their struggle finding trousers, “If I'm going to buy pants,
it's a whole day, a whole event. I have to emotionally prepare myself because I
know I'm gonna be upset. And it's gonna be frustrating.” PWD have to visit multiple
retailers to find clothing that might suit their functional or aesthetic needs, often
finding garments that are accidentally adaptive rather than clearly labelled and
categorised. The additional time and pre-planning taken in this process is a
significant hindrance in the in-person shopping experience.

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Online Shopping
Sizing
When shopping online, identifying the appropriate size and right fit is a gamble,
says one participant: “When I buy clothes online, they're either too big or too small,
or an uncomfortable fit.” This is largely due to brand manipulation (Dockterman,
2022) and inconsistency in sizing charts (Clifford, 2022). For example, vanity sizing
practices and discrepancies within products. One participant stated, “I think
everybody has difficulties when you order from a store and you don't know what
you're getting.” Those with asymmetrical body types that are not typically
considered in clothing design are faced with limited options. This need has been
recognised by some in the shoe industry, such as Zappos Adaptive and Nike’s
‘Single Shoe Program’ ([Link], n.d.), offering innovative strategies for
consumers to buy two different size shoes.

Material Concerns
Elasticity in fabric can make a major difference when it comes to comfort and ease
of donning and doffing, and for many PWD the ability to “feel out the materials to
make sure that it's stretchy enough”, is very important. In our study, 30% of
participants' concerns centred around not being able to feel the fabric or material
when online shopping. Other questions about garment construction, such as
understanding where seams and tags are placed on the product to avoid irritation
and pressure sores, were also raised in interview discussions. One participant
noted, “I'm always going round in shops and feeling the waist bands of trousers,
especially jeans to see how rough the stitching is.” Shoes in particular are a product
that needed to be tried on in person, for example one interviewee describes the
need to “feel the soles, to make sure it’s grippy.” The tactility and feeling when
trying on clothing or accessories is a concern for not just the women with disabilities
but for many shoppers. The barriers to returning such items is the difference.

Figure 3. A fictional illustration of an accessible website which shows features such as openings /
closures, a seated model and a video of the material

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A Qualitative Analysis of the Challenges for Women with Physical Disabilities When Buying Fashion
Online and In-store

Logistics
Organising the delivery and return of items was the top barrier identified by 43% of
interviewees when shopping online. Participants were more likely to return or
exchange a product that lacked or didn’t provide accurate information. “Online, my
proportions are weird, I just feel like finding things that fit is a real challenge and so
the back and forth of returning stuff is exhausting and I just can’t be bothered.” For
many PWD who struggle to leave their home without assistance, the logistics of
having to post or return an item in-store combined with the chance that items will be
delivered in a hard-to-collect location is even more challenging. Another participant
remarks, that “they [delivery person] leave it downstairs and how am I going to get
it upstairs when I can't carry and walk at the same time?” Some of the opportunities
to address logistics include brand familiarity, finding accessible second-hand
products and bulk purchasing.

Purchasing Habits

Brand Familiarity
For PWD, brand knowledge can help relieve sizing, material, and logistical
concerns both in-person and online. For example, brand familiarity includes sizing
knowledge, fabrics that work well for an individual’s body or being comfortable with
the accessible entry points to a physical store. 10% of participants mentioned the
importance of brand familiarity, expressing that it is “very difficult when you are
experimenting with a new brand because of the high energy exertion and financial
risk if it does not work.” Once a customer understands and has a relationship with a
brand, this translates into a less anxious physical shopping experience.
Furthermore, this increases the purchasing confidence in PWD when buying a
product online: “I don't like shopping online, if there is a specific brand that I know
their sizing, then I might buy stuff online.” Because of a lack of options and difficulty
finding adaptive clothes, PWD are loyal returning customers when identifying a
brand that works for them. For example, one participant expressed “when I am
familiar with a brand, I know what works for me - I rarely don't come out with a bag
of clothes.” Brand loyalty provides retailers with the opportunity to connect with
disabled consumers.

Purchasing Second Hand

Accessible clothing and accessories that work for individual style and disability
needs are rare. PWD are likely to “buy [accessible clothing] in a few different
colours, because it’s hard to find things to get on.” Another participant searched
“eBay for the exact pair [of jeans] again and again”. Especially if a product is
discontinued, PWD will be loyal to brands and products that they can rely on. One
interviewee described finding a pair of trousers that worked for her needs but were
discontinued: “[The pants] were ultra-skinny, ultra-soft and had a really soft
waistband and stitching. But Primark doesn't make them anymore, so I’m going on
Ebay and I'm buying up all the pairs I can get my hands on because I know they've
got to last me for the rest of my life.” Despite the challenges and frustrations in
online shopping, brand loyalty and bulk purchases of favourite products are key to
removing some of the barriers for PWD.

Bulk Purchasing
The option to over-order online to try on more comfortably at home and then return
the product has been a strategy for participants. Bulk purchasing can also be an

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YASMIN KEATS, ELLEN FOWLES and GRACE JUN

alternative to in-person shopping. One participant highlighted that “I do put a lot of

thought and care, and I will spend $1,000 on Zappos to order ten pairs of shoes
knowing I will only keep one because it is so hard to find footwear.” However, this
option is limited to those who cannot easily return items nor have the financial
capital to purchase in bulk. Financial means was also a topic that arose from the
data. Not every participant could afford to purchase different sizes and a range of
colours at once.

Limitations
This study was conducted with a specific demographic of 50 women predominantly
in the US with physical disabilities, and therefore the findings are a direct correlation
of their lived experiences. There are of course a variety of PWD that have very
different wants and needs, and this paper doesn’t claim to speak for the experience
of PWD as a whole. The subject matter of the interviews was also semi-structured,
leaving some topics that weren’t fully discussed, such as the journey to the store or
sensory sensitivities when shopping. The participants may have also visited a wide
variety of different retail outlets, from large modern shopping malls to small brick-
and-mortar establishments. Finally, the interviewers were PWD and therefore may
have had unconscious pre-existing biases on the topics.

Conclusion
The study demonstrates some of the factors that contribute to inaccessible in-
person and online shopping in hopes to increase awareness and highlight areas of
actionable solutions for the retail industry. When shopping in stores, participants
mentioned four main topics as barriers to an inclusive shopping experience;
accessing and navigating inside the shop, inaccessible changing rooms, assistance
while dressing and social stigma. When shopping online, sizing, material concerns
and the logistics of delivery and return were some of the biggest challenges to
shopping online. These barriers can be minimised by brand familiarity, purchasing
known-to-work items second-hand, and buying in bulk if financially able.
Fashion has the potential to expand people’s self-expression. Shopping can be a
liberating experience. Yet, current retail systems are still exclusionary, leaving
many of the participants exhausted and filled with negative emotions. Making the
shopping experience more inclusive can help fight stigmas, recognise PWD as
desirable customers through visibility in social and daily life, and help fight ableist
attitudes.

Acknowledgements: This research was sponsored by Open

Style Lab, Illustrated by Hatiye Garip and supported by 50
participants who provided their lived experiences anonymously
for this paper.

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 INCLUDE 2022. Unheard Voices
11th Inclusive Design Conference
Helen Hamlyn Centre for Design
Royal College of Art London, UK
22-23 September, 2022

Inclusive Shared Autonomous

Vehicles
Identifying areas for inclusive design intervention

Robin SEVERS*
Royal College of Art, London, United Kingdom
Jiayu WU
Royal College of Art, London, United Kingdom
Cyriel DIELS
Royal College of Art, London, United Kingdom
Dale HARROW
Royal College of Art, London, United Kingdom
Richard WINSOR
Tata Motors Design UK, Coventry, United Kingdom

Shared Autonomous Vehicles (SAVs) have the potential to improve mobility for
a range of transport-excluded groups, allowing them better access to
economic, social, educational, and health activities. While there are a number
of benefits to SAVs for excluded groups, it is important that their needs are
actively addressed in the design of these vehicles, services and infrastructure.
In order to aid designers in the development of more inclusive SAVs, this paper
presents a number of inclusive SAV design criteria that address the needs of
multiple transport-excluded groups. By exploring literature considering existing
experiences of people excluded from transport due to ageing, disability,
gender, location, income, and ethnicity, a number of barriers were identified.
These barriers were collated into general problem areas common to a number
of groups. Finally, these general problem areas were used to develop multiple
inclusive design criteria within 5 main areas for inclusive SAV design
intervention. These 5 areas are interfaces and information, service,
infrastructure, vehicle, and SAV operation. Considering the design criteria
within each of these areas, designers can begin to develop SAV solutions that
address the needs of multiple transport-excluded people groups and create
more inclusive SAV services.

Keywords: autonomous vehicles; shared mobility; inclusive design; transport-

related social exclusion

* Contact: Robin Severs | e-mail: [Link]@[Link]

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 Inclusive Shared Autonomous Vehicles: Identifying areas for inclusive design intervention

Introduction
Various people groups experience transport exclusion due to factors including
ageing, disability, gender, location, income, and ethnicity (Lucas, 2012). This
exclusion from transport can have a series of knock-on effects with excluded
groups being unable to access essential social, economic, health, and educational
activities (Lucas, 2012).
The introduction of Shared Autonomous Vehicles (SAVs) promises a number of
inherent inclusivity benefits by providing a driverless, door-to-door transport service
for people without access to a private car due to disability, income etc. (Detjen et
al., 2021). These vehicles would operate as part of a service allowing for
synchronous sharing- using the vehicle at the same time as others, and
asynchronous sharing- using the vehicle privately, but not owning the vehicle. To
ensure that these vehicles are as inclusive as possible, more attention needs to be
paid to how these vehicles and services can be designed to address current issues
of transport exclusion.
Studies have explored SAVs in the context of individual excluded groups,
considering attitudes towards SAVs (Bennett, Vijaygopal and Kottasz, 2019a,
2019b, 2020; Brinkley et al., 2020), using participatory design methods to explore
specific needs of excluded groups (Brewer and Kameswaran, 2018) and using full
scale SAV mock-ups to test accessibility of SAVs with disabled people (Wasser et
al., 2018; Tabattanon, Schuler and D’Souza, 2020). Other studies have explored
transport exclusion by categorising it into different groups of barriers (Church, Frost
and Sullivan, 2000; Mackett and Thoreau, 2015; Severs et al., 2021). Less has
been done, however, to understand the crossover in these exclusionary factors
among different excluded groups and to group excluding factors with regard to the
way that inclusive design could be used to address them.
Because SAVs only currently exist as prototypes and trials, literature exploring
excluded groups’ experiences of these vehicles is limited. This paper instead
focuses on how existing experiences of exclusion in transport services can be used
to anticipate exclusion within SAV services, and how SAVs can be designed to
improve on existing transport services by addressing existing exclusion.
This paper presents a synthesis of data from literature looking at existing
experiences of transport among people excluded due to ageing, disability, gender,
location, income, and ethnicity. Through this synthesis we identify a number of SAV
design criteria within 5 areas of inclusive SAV design intervention: Service,
Infrastructure, SAV Operation, Vehicle Design, and Information and Interfaces and
identify some of the ways in which SAV services may inherently address some
issues of exclusion.
By taking an Inclusive Design for Transport approach (Severs et al., 2021), this
paper includes research focusing on the needs of groups beyond the age-ability
construct and ensures that issues of usability, availability and experience are all
included in discussions of inclusivity. Due to the potential for specially adapted
vehicles within transport services (e.g. accessible taxis) to cause exclusion for
groups due to lack of availability (Wong et al., 2020), the design criteria detailed in
this paper present opportunities for design that can be applied to every SAV within
a service.
This paper ultimately seeks to answer the research question: How might inclusive
design interventions be used in the development of SAVs to ensure that each
vehicle and the service itself meets the needs of a broad spectrum of people?

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Methods: Synthesis of design criteria

An initial study of literature considered a range of focus group and survey studies
with members of different excluded groups, as well as grey literature such as
reports from organisations involved in advocating for the needs of transport-
excluded groups. This data was collected as individual issues of transport exclusion
relating to each group and sorted into four broad categories to make the data more
manageable. These categories are service, infrastructure & built environment,
vehicle, and digital & information. These categories were generated based on a
thematic review from an initial reading of the literature, and from categories used in
some of the studies considered e.g. service from Park and Chowdhury (2018)
A process of data synthesis was then used to translate these individual issues of
exclusion into general problem areas common to multiple groups (Figure 1). These
general problem areas were used to generate individual design criteria where the
design of SAVs may be able to address these barriers.

Figure 1: Process of synthesis from initial barriers to design criteria within 5 areas of intervention

These design criteria were then sorted into 5 broad areas of inclusive SAV design
intervention: Service, Infrastructure, SAV Operation, Vehicle Design, and
Information and Interfaces. These groupings were created so that stakeholders
involved in each of these areas of SAV development can be made aware of the
range of ways in which they can contribute to creating more inclusive SAV services.
One additional category, Inherent SAV qualities, was also added in order to include
the ways in which SAVs already address some barriers.
This process of synthesis was mapped using Miro (an online whiteboard software)
to retain each step of the process and allow the detail of the initial barriers to be
accessed when designing solutions. Figures 2-5 show these maps and Tables 1-4
contain examples of the individual barriers collected from the literature

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 Inclusive Shared Autonomous Vehicles: Identifying areas for inclusive design intervention

corresponding to the codes on the first set of lines. The numbers in the design
criteria sections link to the criteria detailed in the following section.

Figure 2 Miro board mapping development of inclusive SAV design criteria related to service-based barriers

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ROBIN SEVERS, JIAYU WU, CYRIEL DIELS, DALE HARROW and RICHARD WINSOR

Table 1. Descriptions of specific exclusionary barriers from Figure 2

Code Description of barrier from literature
A1 Poor attitude and awareness, bus not stopping, language barrier; poor training and awareness
(Park and Chowdhury, 2018)
B1 Poor training and awareness (Fürst and Vogelauer, 2012)
C1 Poor attitude and awareness, bus not stopping (Park and Chowdhury, 2018)
C2 Wheelchair users waiting for bus that allows them to board (Velho, 2019)
D1 Poor communication and provision of information, bus not stopping, driving behaviour- hard
breaking etc. (Risser, Iwarsson and Ståhl, 2012)
E1 Costly fares (Deka, Feeley and Lubin, 2016)
E2 Worried about driver behaviour (Deka, Feeley and Lubin, 2016)
F1 Transport routes favouring types of journeys men are more likely to take e.g. commuting and not
the shorter journeys women are more likely to take for caring roles (Gill, 2018)
F2 More likely to be in part-time work therefore missing out on transport savings from season tickets
and passes (Gill, 2018)
G1 Transport routing not taking into account journey need to connect immigrant communities
(Schachter and Liu, 2005)
G2 Communication with driver in second language, racism (Schachter and Liu, 2005)
G3 Uber, Lyft allowing for driver biases to dictate whether a passenger gets to use the service (Ge et
al., 2016)
H1 Poor provision (Velaga et al., 2012)
H2 Rising costs of transport services (Allen, 2020)
H3 Decreasing level of service (Allen, 2020)
J1 Existing transport routes favouring commuting, fewer older people work, more likely to make
journeys across communities (Centre for Ageing Better, 2019)
J2 Having to change modes (Gilhooly, Hamilton and O’Neill, 2002)
J3 Cost of more flexible modes of transport is higher (Centre for Ageing Better, 2019)
J4 Service running late/ cancellations (Gilhooly, Hamilton and O’Neill, 2002)
J5 Having to wait (Gilhooly, Hamilton and O’Neill, 2002)

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 Inclusive Shared Autonomous Vehicles: Identifying areas for inclusive design intervention

Figure 3: Miro board mapping development of inclusive design for SAV design criteria related to
transport infrastructure and built environment based issues

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ROBIN SEVERS, JIAYU WU, CYRIEL DIELS, DALE HARROW and RICHARD WINSOR

Table 2. Descriptions of specific exclusionary barriers from Figure 3

Code Description of barrier from literature
A1 Distance to travel to and from vehicle (Park and Chowdhury, 2018)
A2 Obstructions, uneven surfaces, poor lighting, lack of footpaths, lack of tactile surfaces, lack of
contrast marking (Fürst and Vogelauer, 2012; Park and Chowdhury, 2018)
A3 Railway crossings without gates, tactile surfaces and lighting (Fürst and Vogelauer, 2012)
A4 Not easily visible distinction between pedestrian and cycle path (Fürst and Vogelauer, 2012)
A5 Footpath closures, cones obstructing path, removal of tactile paving, noise, scaffolding, lack of solid
barriers (Fürst and Vogelauer, 2012; Park and Chowdhury, 2018)
A6 Obstruction by bollards, hydrants, advertising pillars, cars, restaurant tables and menus; need for
contrasting colours (Fürst and Vogelauer, 2012)
A7 Lack of shelters, steep ramps, lack of lifts, lack of toilets, gap between vehicle and platform (Park
and Chowdhury, 2018)
B1 Uneven surfaces, gaps (Fürst and Vogelauer, 2012)
B2 Railway crossings without gates and lighting (Fürst and Vogelauer, 2012)
B3 Need for emergency button for HI people in lifts (Fürst and Vogelauer, 2012)
C1 Distance to travel to and from vehicle (Park and Chowdhury, 2018)
C2 Obstructions, uneven surfaces (Park and Chowdhury, 2018)
C3 Temporary walkways (Park and Chowdhury, 2018)
C4 Steep gradients, hills, curbs, crossing roads, security on journey (Park and Chowdhury, 2018)
C5 Lack of accessible parking at stations (Park and Chowdhury, 2018)
C6 Lack of shelters, steep ramps, lack of lifts, lack of toilets, gap between vehicle and platform (Park
and Chowdhury, 2018)
D1 Poor maintenance of pedestrian environment, uneven surfaces (Risser, Iwarsson and Ståhl, 2012)
D2 Poor placement/ location (Risser, Iwarsson and Ståhl, 2012)
D3 Poor positioning (Risser, Iwarsson and Ståhl, 2012)
F1 Fear of being alone in car parks, underground stations and railway platforms (European
Commission. Directorate General for Mobility and Transport., 2014)
I1 Poor state of environment for walking (Bostock, 2001)
I2 Security & safety when walking with children (Bostock, 2001)
J1 Door-to-vehicle, first and last 10 yards (Centre for Ageing Better, 2019)
J2 Lack of facilities including toilets, seating etc. (Centre for Ageing Better, 2019)
J3 Lack of good signage (Centre for Ageing Better, 2019)
J4 Poor pavement quality (Centre for Ageing Better, 2019)
J5 Being out in bad weather (Gilhooly, Hamilton and O’Neill, 2002)

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Figure 4: Miro board mapping development of inclusive design for SAV design criteria related to
vehicle-based issues

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ROBIN SEVERS, JIAYU WU, CYRIEL DIELS, DALE HARROW and RICHARD WINSOR

Table 3. Descriptions of specific exclusionary barriers from Figure 4

Code Description of barrier from literature
A1 Distance from vehicle to kerb (Fürst and Vogelauer, 2012)
A2 Steps onboard, seats too close together, buzzers not in same location, lack of contrasting colours
on edges; need for low-floor-vehicles (Fürst and Vogelauer, 2012; Park and Chowdhury, 2018)
A3 Faulty stop buttons; need for large tactile door buttons (Fürst and Vogelauer, 2012; Park and
Chowdhury, 2018)
A4 Audio feedback not loud enough; Need for voice output and larger font size (Fürst and Vogelauer,
2012; Park and Chowdhury, 2018)
C1 Too steep, lack of kneeling feature on buses (Park and Chowdhury, 2018)
C2 Narrow buses, inadequate space, steps onboard (Park and Chowdhury, 2018)
C3 Inadequate wheelchair restraints (Park and Chowdhury, 2018)
D1 High steps, kneeling function not used, stopping far away from kerbs, heavy breaking and
accelerating when standing to disembark. Similar issues to PI people due to cognitive impairments
often having PI comorbidities, post stroke etc. (Risser, Iwarsson and Ståhl, 2012)
D2 Navigating to seat when vehicle moving, visibility from seat making requesting a stop at the right
moment difficult (Risser, Iwarsson and Ståhl, 2012)
D3 Location of ticket validation, buying a ticket, handling payment (Risser, Iwarsson and Ståhl, 2012)
E1 Worried about finding a seat (Deka, Feeley and Lubin, 2016)
F1 More vulnerable to injury due to vehicle design failing to account for differences in physiology
between men and women (European Commission. Directorate General for Mobility and Transport.,
2014)
F2 Not feeling safe travelling at night, alone, or in crowded transport services where sexual assault
may occur (European Commission. Directorate General for Mobility and Transport., 2014)
J1 Personal security in evening and at night (Gilhooly, Hamilton and O’Neill, 2002)
J2 Difficulties carrying heavy loads (Gilhooly, Hamilton and O’Neill, 2002)
J3 Behaviour of some passengers (Gilhooly, Hamilton and O’Neill, 2002)
J4 Lack of cleanliness (Gilhooly, Hamilton and O’Neill, 2002)

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Figure 5: Miro board mapping development of inclusive design for SAV design criteria related to
digital and information based issues

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ROBIN SEVERS, JIAYU WU, CYRIEL DIELS, DALE HARROW and RICHARD WINSOR

Table 4. Descriptions of specific exclusionary barriers from Figure 5

Code Description of barrier from literature
A1 Need for accessible, downloadable route planning for on-trip use (Fürst and Vogelauer, 2012)
A2 Poor contrast, small print; too far away, too high, small print, reflective glass, not enough
information on displays, poor contrast (Fürst and Vogelauer, 2012; Park and Chowdhury, 2018)
A3 Lack of audio announcements on vehicles and at ticket machines; need for clear on-demand
audio info (Fürst and Vogelauer, 2012; Park and Chowdhury, 2018)
A4 Lack of accessible real time info (Fürst and Vogelauer, 2012; Park and Chowdhury, 2018)
A5 Inadequate guiding systems, need for clear splitting of station areas for different lines, need for
clearer markings and signage, need for clearly visible arrival information (Fürst and Vogelauer,
2012)
A6 Small text, poor contrast, lack of voice output (Fürst and Vogelauer, 2012)
A7 Illegible network plans- not at eye-level, too far away, not large enough, need for information in
audio format ("two-senses-principle"), need for accessible on-demand information (Fürst and
Vogelauer, 2012)
A8 Small text, lack of voice output (Fürst and Vogelauer, 2012)
B1 Need for accessible, downloadable route planning for on-trip use (Fürst and Vogelauer, 2012)
B2 Need for accessible, downloadable route planning for on-trip use (Fürst and Vogelauer, 2012)
B3 Lack of accessible real time info (Fürst and Vogelauer, 2012)
B4 Need for clearly visible arrival information (Fürst and Vogelauer, 2012)
B5 Need for information in visual format ("two-senses-principle"), need for accessible on-demand
information (Fürst and Vogelauer, 2012)
B6 Need for visual alerts that can catch eye of HI people (Fürst and Vogelauer, 2012)
C1 Stigma from ramp alarm (Velho, 2019)
D1 Relying on others to plan trips, poor automated telephone planning service desire for a "human
voice" (Risser, Iwarsson and Ståhl, 2012)
D2 Difficulties reading timetables and numbers, small print, difficulties remembering information,
difficulties locating departure bus stop, regularly changing bus numbers (Risser, Iwarsson and
Ståhl, 2012)
D3 Hard to understand (Risser, Iwarsson and Ståhl, 2012)
D4 Difficult to use pavement guidance systems- poor contrast and placement (Risser, Iwarsson and
Ståhl, 2012)
E1 Difficulties with planning (Deka, Feeley and Lubin, 2016)
G1 Language barrier (minority of group) (Schachter and Liu, 2005)
G2 Hard to understand (Schachter and Liu, 2005)
G3 Instructions in second language (Schachter and Liu, 2005)
H1 Poor/ lack of real-time passenger information systems (Velaga et al., 2012)
I1 Unbanked passengers unable to use contactless payment systems (Brakewood and Kocur,
2013)
J1 Over reliance on tech based booking, payment and ticketing (Centre for Ageing Better, 2019)

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 Inclusive Shared Autonomous Vehicles: Identifying areas for inclusive design intervention

Results: Design criteria for inclusive SAVs

The following section describes the design criteria generated through the synthesis
of data from the literature studied. These criteria relate to the design of physical
aspects of the SAV service e.g. vehicle features, but also relate to the design of the
service itself. Each criterion has a number to linking it to Figures 2-5 to demonstrate
how the criteria were generated.

Service
The service area refers to any elements of the SAV service related to the
administration and provision of the service, this includes staffing, timings,
availability and pricing.
Inclusivity at the service level can address the ways that many people are excluded
by poor availability of transport (Severs et al., 2021). Groups currently experience
exclusion as a result of service based factors such as people in rural areas
experiencing poor provision of transport (Velaga et al., 2012; Allen, 2020). Cost is
another significant service-based excluding factor for a number of groups including
those in rural areas, and women (Gill, 2018; Allen, 2020). Disabled people and
those belonging to certain ethnic groups may also experience exclusion as a result
of the actions and attitudes of drivers and staff such as racism and lack of
awareness of disability (Deka, Feeley and Lubin, 2016; Ge et al., 2016; Park and
Chowdhury, 2018).
The following criteria relate to the design of the SAV service:
1.1 High number of inclusive SAVs in service- Making sure that there are enough
inclusive SAVs in the service and that they all meet the needs of excluded groups.
1.2 Demand responsive- SAVs responding quickly to changes in demand can
ensure that they are available when needed. This is particularly valuable in
locations such as rural areas where transport services are not always immediately
available. When developing demand responsive SAV services, it is important to
ensure that these do not favour certain groups more than others. For example,
there is a danger that these services may perpetuate gendered exclusions resulting
from male-dominated journeys being better provided for than the journeys that
women may be more likely to take.
1.3 Vehicles well maintained- Ensuring that SAVs are reliable and therefore
available when needed, particularly in areas with fewer available vehicles.
1.4 Well trained staff- Ensuring that, if staff are part of the SAV service, they are
aware of the needs of different excluded groups and do not serve to actively
exclude them.
1.5 Available in underserved locations- Making sure that SAVs don’t perpetuate
location-based exclusion by being available in rural areas and other underserved
locations.
1.6 Fairly priced- Addressing current issues of gendered and location based
financial exclusion in transport and ensuring that SAV journey prices are kept low
for all groups.
1.7 Availability of staff to assist with booking etc.- Making sure that staff are
available to assist people with activities that inclusive design solutions may not be
able to fully address.

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Infrastructure
The infrastructure area includes criteria relating to the design of stops, stations and
road infrastructure that may be used by the SAV service.
Certain groups currently experience exclusion as a result of waiting facilities not
meeting their needs with places to sit and toilet facilities (Centre for Ageing Better,
2019), groups including older people and women also experience fear based
exclusion while using waiting facilities (Gilhooly, Hamilton and O’Neill, 2002;
European Commission. Directorate General for Mobility and Transport., 2014).
Further exclusion occurs for disabled people- especially mobility & visually impaired
people- as a result of pavements being obstructed (Fürst and Vogelauer, 2012;
Risser, Iwarsson and Ståhl, 2012; Park and Chowdhury, 2018).
Inclusive infrastructure design may help to address other issues of transport
exclusion, particularly issues related to boarding that affect a number of disabled
groups and older people (Fürst and Vogelauer, 2012; Risser, Iwarsson and Ståhl,
2012; Park and Chowdhury, 2018). SAV infrastructure could also address issues
related to the need to travel from the vehicle to your destination that many disabled
groups face (Park and Chowdhury, 2018) by providing designated SAV spaces
near key destinations.
The following criteria relate to the design of SAV infrastructure:
2.1 Dedicated space on roads for SAVs- Allowing SAVs to travel more efficiently
and drop people closer to their destination.
2.2 Inclusive stops and stations- Making sure that excluded groups are able to wait
comfortably and safely, and board the vehicle easily.

SAV operation
The SAV operation area is related to the way the vehicle drives and chooses routes
in the absence of a driver.
In existing transport services certain excluded groups experience difficulties due to
aggressive driving styles making moving within the vehicle difficult (Risser,
Iwarsson and Ståhl, 2012), vehicles not stopping close to the kerb for easy
boarding (Fürst and Vogelauer, 2012), and vehicles not stopping at all (Velho,
2019). The way that the SAV drives and operates has the potential to address
some of these issues.
SAV operation may also be able to address some issues related to fear based
exclusion experienced by groups such as women and older people by adjusting
where the vehicle travels and stops and by giving passengers control over their
journeys (Gilhooly, Hamilton and O’Neill, 2002; European Commission. Directorate
General for Mobility and Transport., 2014).
The following criteria relate to the design of SAV operation:
3.1 Giving passengers control- Providing people with choices over the routes the
vehicle takes and where it drops them off to ensure that they feel safe and secure.
3.2 Inclusive drop off locations- Making sure that SAVs drop people in areas that
are safe, secure, easily accessible and close to their destination.
3.3 Considerate driving style- Ensuring that SAVs drive smoothly, stop close to the
pavement and reducing the need for passengers to move around while the vehicle
is moving by allowing them time to sit.

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 Inclusive Shared Autonomous Vehicles: Identifying areas for inclusive design intervention

Vehicle design
The vehicle design area includes the physical aspects of the design of the vehicle,
including interior layouts, seating, and more technical issues including the design of
the vehicle architecture. This area also includes the physical location of interfaces
within the vehicle, as these design decisions are more likely to occur when
designing the vehicle interior than when designing the user interfaces themselves.
People currently experience exclusion in transport services due to the design of
existing vehicles not meeting their needs with poor wheelchair occupancy, difficulty
navigating inside, difficulty boarding, and insufficient space (Fürst and Vogelauer,
2012; Risser, Iwarsson and Ståhl, 2012; Park and Chowdhury, 2018). Certain
groups also experience exclusion as a result of basic anthropometric and
ergonomic differences not being considered in the design of seating and safety
features (European Commission. Directorate General for Mobility and Transport.,
2014).
As well as addressing these more obvious points of exclusion inclusive vehicle
design may also be used to address issues of fear based exclusion caused by
sharing vehicles with strangers (European Commission. Directorate General for
Mobility and Transport., 2014).
The following criteria relate to the design of the shared autonomous vehicles,
themselves:
4.1 Low cost of materials and manufacture- Keeping the cost of the vehicle low to
increase the likelihood that journey prices may be lower for low income groups.
4.2 Inclusive storage solutions- Allowing for easy access to luggage storage and
reducing the need to carry luggage onboard the vehicle. Providing designated
storage for mobility aids and assistive devices.
4.3 Accessible boarding- Creating easier boarding options for disabled and older
people with ramps, level-boarding, hand rails etc.
4.4 Inclusive interior layout- Ensuring that navigating within the vehicle is easy for
disabled people, particularly those with visual and mobility impairments and that
there is sufficient space for wheelchair users.
4.5 Features to replace role of driver in assisting passengers- The absence of the
driver to assist excluded groups may cause further exclusion. Considering how
these activities could be automated within the design of the vehicle itself may
ensure new barriers are not created in the absence of a driver.
4.6 Inclusive provision for in-vehicle activities and entertainment- The experience
dimension of the Inclusive Design for Transport approach may be addressed in the
design of vehicles that facilitate excluded groups engaging in other on-journey
activities.
4.7 Security for passengers- Creating interior spaces that feel safe to groups who
may experience fear based exclusion. This may be achieved through interventions
such as the division of the space and lighting.
4.8 Inclusive layout of interfaces and information- Locating interfaces within the
vehicle in a way that is accessible to all users, e.g. at appropriate levels for
wheelchair users and within easy reach of visually impaired people.
4.9 Inclusive ergonomics and anthropometrics- Ensuring that the dimensions of
features such as seating, doors, luggage storage etc. are designed to suit people of
all shapes and sizes and keep them safe.

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4.10 Inclusive vehicle package and architecture- Making sure that decisions about
vehicle architecture and packaging, made at the beginning of the design process
meet the needs of excluded groups e.g. the height of the floor is made as low as
possible to enable level boarding for wheelchair users.

Information and Interfaces

The Information and Interfaces area considers all of the ways that people may
access information and interact with the SAV service through controls, digital
interfaces, written information, and other modes of displaying information.
The main excluded groups that may be affected by non-inclusive design in this area
are visually and hearing impaired people who may have difficulties if information is
not presented with both auditory and visual means (Fürst and Vogelauer, 2012).
People may also be excluded within this area if the information is not available in a
language they understand (Schachter and Liu, 2005). Older people may be affected
by lack of access to a smartphone and lower technology proficiency (Centre for
Ageing Better, 2019) and unbanked passengers may be excluded due to a reliance
on contactless payments (Brakewood and Kocur, 2013).
As well as issues of inclusion with regard to using digital information and interfaces,
there are opportunities, provided by these services, that may help to meet other
needs of excluded groups. Booking and planning interfaces, for example, may
provide opportunities for priority seating to be booked which ensures disabled
people have a guaranteed seat.
Although much journey information for SAVs may be provided through digital
means, there will still be a need for non-digital information for purposes such as
signage, wayfinding, and locating different vehicle functions. Non-digital information
presents certain benefits to visually impaired people as it may be presented in a
tactile way through braille and tactile flooring surfaces. This level of tactile
information is not usually available in digital transport-based information and
interfaces.
The following criteria relate to the design of SAV information and interfaces:
5.1 Publicly available booking and planning interfaces- Providing publicly
accessible interfaces for those who don’t have access to a smartphone or another
device.
5.2 Inclusive booking and planning app- Making sure that app interfaces are
useable by all groups who may want to use them.
5.3 Inclusive on-board journey information- Ensuring that all information given
during the journey is available in accessible formats.
5.4 Inclusive web-based information- Providing for those with access to the web but
who are less likely to use a smartphone and ensuring that these interfaces are
accessible.
5.5 Lo-tech alternatives to digital interfaces- Allowing for alternatives to contactless
payment and less reliance on digital interfaces to use the service.
5.6 Inclusive, clear signage and wayfinding- Ensuring that all groups are able to
navigate within and outside the vehicle and easily identify features that they need to
use.
5.7 Inclusive permanent information- Making sure that information that is
permanently situated in the vehicle or infrastructure is provided in accessible
formats including high contrast, large print, audio, and tactile formats.

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 Inclusive Shared Autonomous Vehicles: Identifying areas for inclusive design intervention

Inherent SAV qualities

While there is a lot of work to be done to ensure that SAVs are designed to meet
the needs of excluded users, some points of exclusion from the literature may
already be addressed by certain inherent qualities of SAVs.
6.1 Door-to-door service- Door-to-door operation of SAVs benefits a number of
groups who currently experience barriers within the built environment when walking
to and from the vehicle, by providing them with a service that meets them at their
door. This door-to-door service could be improved through provision of designated
SAV spaces near disabled peoples’ homes and key locations as well as the
provision of dedicated SAV lanes.
6.2 Driverless- While there may be a number of benefits for excluded groups to
having a driver in the vehicle, many groups experience exclusion as a result of the
behaviour and attitudes of the driver, including racism, poor driving and lack of
disability awareness (Fürst and Vogelauer, 2012; Risser, Iwarsson and Ståhl, 2012;
Ge et al., 2016). Removing the driver and automating this role may result in fewer
driver-related exclusions, although, as mentioned above, SAV design needs to
replace the positive roles of the driver that might be absent.
6.3 Connected- The connected aspect of SAVs enables them to better respond to
demand and navigate more efficiently. Although transport efficiency is a universal
desire, it was mentioned regularly as an excluding factor in the literature as a lack
of efficiency often characterises the experiences of excluded groups who are less
likely to benefit from the efficiency of private vehicle use. SAVs may present a level
of efficiency for excluded groups that is not currently available in the transport
services that are available to them.

Conclusion and recommendations for further

research
This paper has presented how existing issues of transport exclusion gathered from
a range of literature have been used to develop several inclusive SAV design
criteria, which fit into 5 areas of inclusive SAV design intervention: Service,
Infrastructure, SAV Operation, Vehicle Design, and Information and Interfaces.
These criteria may be used by SAV designers and other stakeholders as a starting
point to develop more inclusive SAVs and SAV services.
While exploring existing transport exclusion allows for many insights into how
excluded groups experience transport and does enable discussions around how
future mobility could be designed, further research should explore how members of
these groups envisage that new barriers might arise from the introduction of SAVs.
Further research should also explore these criteria in more detail alongside
members of the full range of transport excluded groups, through participatory
design or similar participatory research methods.

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 INCLUDE 2022. Unheard Voices
11th Inclusive Design Conference
Helen Hamlyn Centre for Design
Royal College of Art London, UK
22-23 September, 2022

People Moving through Space

Towards a comprehensive framework to decode spatial
exclusion

Lakshmi SRINIVASAN*
Srishti Manipal Institute of Art, Design and Technology, Manipal Academy of Higher
Education, Bengaluru

Mainstream literature on socio-spatial exclusion is varied in its observations about

different types and layers of exclusions, which include, but are not limited to access,
socio-political exclusion, gendered exclusion, exclusions on mobility etc. In spatial
design pedagogy there is a need for an approach that introduces different
dimensions of spatial exclusion to learners in a cohesive manner. Especially among
undergraduate learners, there is a need for this understanding to focus more on the
scale of buildings and individuals accessing spaces.
This paper proposes a comprehensive pedagogic framework to decode spatial
exclusion by postulating that it occurs as “people move through space”. Therefore,
it is impacted by –
- The people moving through the space: the types of identities that people
possess with respect to the physical bodies they occupy and associated
identities (physical abilities, skin colour etc.), their metaphysical experiences
(cognition, emotions etc.) and their social identities (how their physical &
metaphysical dimensions are received in the society).
- The acts of “moving through” expressed as accessibility and mobility, which
include safety, speed etc.
- The material properties of the physical space which includes the materials used,
dimensions, distances etc.
- Additionally, the interaction of people with others in space - as this creates socio-
political dynamics.
The paper presents the proposed framework in relation to different mainstream
texts. It is examined and demonstrated through masters’ student projects which
feature case studies from India, Brazil and Jordan. Application of the framework in
a studio setting is also demonstrated.

Keywords: spatial exclusion; architecture; metaphysical exclusion; spatial

inclusion

* Contact: Lakshmi Shrinivasan | e-mail: [Link]@[Link]

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 People Moving through Space: Towards a comprehensive framework to decode spatial exclusion

Introduction & Scope

Discussions and initiatives around spatial justice and inclusion have been on the
rise in academia in the recent past (Philippopoulos-Mihalopoulos, 2015). However,
mainstream literature around exclusion in physical spaces is yet to witness the rise
of a holistic theory of spatial inclusion and exclusion. This paper proposes a
pedagogic framework that can initiate a holistic theoretical approach towards
decoding spatial exclusion in the spatial design pedagogic space (architecture,
urban design, planning etc.). The study of exclusion provides a crucial foundational
understanding of the existing conditions that need to be addressed in order to
design for spatial inclusion.
The scope of the framework is to introduce concepts of spatial exclusion to senior
Undergraduate students (Year 2 and above) or junior Postgraduate students.
Therefore, the focus shall be on the scale of individual urban buildings and people
accessing them. The scope is limited to experiences of exclusion within built
space.

Literature, Relevance and Methodology

Examining Existing Literature

Six lists of literature on socio-spatial exclusion, relevant to pedagogy, were
reviewed including postgraduate course syllabi (Akkar, 2017) (Carmin, 2004),
recommended reading lists for students by universities (University of Toronto, n.d.)
(Spatial Justice Studio | Center for Design Innovation, 2022) (The Spatial Justice
Network, n.d.) and two issues of Justice Spatiale, Spatial Justice (Dufaux et al.,
2009) (Froment-Meurice and Hancock, 2021).
This review revealed the following areas of discussion around experiences of
spatial exclusion:
- People and their relationship to socio-spatial exclusion, more specifically,
bodily & socio-political Identities, human emotional/cognitive experiences
e.g. (Rothstein, 2017)
- Space and policy as tools in generating diagrams of power, e.g. (Lee Jr.,
2020) (Foucault and Sheridan, 1995)
- Space as a causative agent or catalyst for socio-spatial exclusion, e.g.
(Mortice, n.d.)
- Discussions on accessibility and mobility such as relationships between
mobility & gender e.g. (Roy, 2003), barrier-free design of space e.g.
(Steinfeld and Maisel, 2012), safety of access and neighborhoods e.g.
(Morelle, Tadié and Hancock, 2011) etc.
- Social exclusion and community action in and around space. e.g.
(Natarajan, 2019)
To validate these findings, a literature review was conducted through meta-analysis
(Davis et al., 2014) in the Taylor & Francis database as depicted in figure 1. The
abstracts of relevant articles in the search results were perused and qualitatively
analysed to determine which areas of spatial inclusion or exclusion were addressed
in the article. All the abstracts analysed indicated that the articles contained
information or analysis pertaining to one or more areas of spatial exclusion
described in this section (Figure 1).

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LAKSHMI SRINIVASAN

Figure 1. The results of literature review. Source: Author

Why This Topic Merits Discussion

Spatial design education requires context-specific or site-specific understandings.
While contemporary literature on inclusion and exclusion delivers rich intensive
content on a particular theme of inclusion studies such as urban mobility, gendered
inclusion etc., there is very little public literature on spatial inclusion that discusses a
holistic framework for the study of a specific site, building or public space. In
design-oriented undergraduate studios which do not intensively delve into theory of
inclusion, there is a need for methods or tools that can be applied directly to the
design process. Also, discussions that go beyond barrier free environments must
be actively encouraged and woven into the design process and undergraduate
curriculum.

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 People Moving through Space: Towards a comprehensive framework to decode spatial exclusion

Methodology
This paper introduces a framework encapsulated within the phrase “People Moving
Through Space” as a lens or a rational construction to explain the experience of
socio-spatial exclusions of individuals in a given built environment. This is done in
order “to develop…explanations, and predictions that hold true in all cases of a
behaviour under study” (Groat & Wang, 2001).
The paper employs a descriptive case study methodology (Yin, 2018) to
demonstrate the validity and applications of the framework through discussions on
masters’ student projects based on real sites in India, Jordan and Brazil. Concept
mapping (Santiago, 2011) is a data visualisation technique used to depict
hierarchies between different components and to establish relationships between
them by use of signifiers (such as arrows or lines). As evidenced in Figure 10 and
Figure 11 concept mapping is employed to create maps that visually replicate the
hierarchies of the proposed framework (Figure 5).

Figure 2. Comparison of two images of the same space at day and night). Source: (Srinivasan, 2017)

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LAKSHMI SRINIVASAN

Properties of Exclusion

Exclusion as a spectrum
The dictionary definition of excluding is the prevention or restriction of entrance
("exclude", n.d.). While this definition makes exclusion seem absolute, the
experience of exclusion often occurs on a continuum (Burchardt, Le Grand and
Piachaud, 2002). For example, Weisman (1994) discusses women’s exclusion from
city streets by patriarchy. She is not referring to an absolute exclusion i.e. a law that
prohibits women from occupying the streets. She is referring to a much more
complex form of exclusion where women are socially taught to avoid streets that
have a high male presence and instances of gang violence. There is a social
implication which is encoded as a cognitive message in the minds of women that
certain streets are “unsafe”.

Exclusion as a Temporal phenomenon:

Nawratek and Nawratek (2015) discuss how radical inclusivity can perhaps only
happen at certain frozen moments of time. This implies that states of inclusion and
thus, exclusion change with time. Figure 2 shows two pictures of the same space in
a train station in Chennai (India). The appears benign during the day but at night,
many women traversing through the same space found it unwelcoming and scary
(Srinivasan, 2017).

Components of the Framework

The four critical areas of examination required to understand exclusion in an
existing built space (Section 2) shall become the components of the framework.

Physical, Metaphysical & Identity: Mind, Body & Society

1) The Physical Body:

As experiences of exclusion happen through the physical body it becomes crucial in
understanding exclusion. Discussion around the body dimension of exclusion
encompasses many aspects such as body positivity, limbic (dis)abilities, sensory
(dis)abilities and neurodiversity. Anthropometric architectural standards1 which are
prescribed to Undergraduate architecture students, have garnered criticism
(Masson, Hignett and Gyi, 2015) (Steinfeld, Lenker and Paquet, 2002) (Hobson and
Molenbroek, 1990). The reason for this critique is the lack of sufficient information
and flexibility in these standards to truly represent and match the diversity in body
types, dimensions, physical abilities, neuro-divergence and needs of people. For
example, Figure 3 from Neufert’s Standards (Neufert et al., 2002) depicts a set of
body dimensions as “normal” and does not take into account different body
dimensions such as weight, height or limbic abilities.

1
A set of standard dimensions (based on human body dimensions) for space needed for activities and
furniture usually occurring in the form of books prescribed to undergraduate students of spatial design.

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2) The Metaphysical: Emotional, Cognition and Experiential Dimensions:

Figure 4, depicts a visualisation of the cognitive map and the emotions of a young
woman while moving through a public train station in Chennai, India at night
(Srinivasan, 2017). As she traverses the space, she has every legal right to move
freely through the station once she has bought a ticket. However, her emotional
experience is of fear and anxiety. Also, if she were to move through this space
during the day or when the station is more populated, her anxiety wouldn’t be as
severe. Closely linked to socio-political and bodily identity, is the emotional and
cognitive experience of space. Each individual experiences space and perceives
security differently (Minton, 2012). Based on past experiences and their social
identities, people develop cognitive understandings and maps of different spaces in
order to navigate them safely and efficiently (Weisman, 1992).

3) Socio-Economic and Socio-Political Identities:

In addition to physical attributes, people are associated or self-associate with
identities that are constructed in the socio-political and socio-economic sphere
which include but are not limited to gender, race, queerness, class, caste, literacy,
immigration status, citizenship, nationality etc. (Cerulo, 1997). These identities may
also be interlinked to physical attributes. For example, while skin colour by itself
may be a physical attribute, in a socio-political sphere it can be interpreted as racial
identity or as a method of “othering” based on political positioning, and cultural
heritage (Jablonski, 2020). Similarly, neighbourhood segregation based on
household income has been observed (Browning et al., 2017). The difference
created by this economic aspect of income can manifest as a part of one’s socio-
economic identity.

Figure 3. Image Source: (Neufert et al., 2002)

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LAKSHMI SRINIVASAN

Figure 4. Cognitive map of young woman at night in a train station. Source: (Srinivasan, 2017)

Space as an Instrument, Catalyst or Deterrent

1) Physical Space:
Physical space can be used as an instrument to create segregation and “defensible
spaces” (Newman, 1978). Exclusions can also occur as the unintentional
consequence of spatial design. [Link] (2015) discusses how architecture can
be used as a regulatory mechanism to socially segregate through built forms.
Bannert and Elnokaly (2013) discuss the unintended exclusion of the disabled in
the city of Lincoln due to its design features such as steep inclines. Literature
reveals four qualities of tangible physical space, which will be hereafter referred to
as “material realities” of space, that can be instrumental in the generation of
exclusions:
- Distances and dimensions of space,
- Barriers and lack of access infrastructure,
- The materials that the space is made of,
- Sensorial experiences created by spaces i.e. smell, noise etc.

2) Intangible Spatial Conditions:

Most physical spaces are governed by intangible conditions such as administrative
policies, political conditions, laws or border conditions. Their presence is witnessed
in the form of infrastructure (for example, biometric entry door locks) or through a
labour force (like policing). Like material realities, these intangible conditions can be

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 People Moving through Space: Towards a comprehensive framework to decode spatial exclusion

used to generate exclusions. Conversely, space can also be used to deter

exclusion through material realities and through intangible conditions.

Mobility and Access

The exclusion occurring during the act of “moving through” a space consists of two
components – the access to the destination (or mode of movement) and the
conditions of mobility.
1) Access: Exclusion by its very definition is the lack of access. Often,
measurements and understandings of exclusion are used synonymously with “lack
of accessibility” (Akkar Ercan, 2004) (Steinfeld and Maisel, 2014). Therefore, we
can conclude that lack of accessibility is the consequence or the end product in the
process of exclusion.
Physical Access: Universal design, barrier-free environments and standard
dimensions for providing access to the differently abled in spatial infrastructure
have constantly been featured in discussions of spatial exclusion and inclusion
(Steinfeld and Maisel, 2014).
Access to Information: Various kinds of information in the form of physical features
(e.g. signage) or digital tools (e.g. google maps) are required to navigate and
access spaces. Access to this information can be hindered by lack of infrastructure
that conveys information or by information infrastructure not catering to everyone.
For example, lack of audio or tactile signage can hinder wayfinding for people with
vision impairments.
2) Mobility: Literature points to different dimensions of mobility related exclusions
such as urban mobility (Tonkiss, 2015), gendered mobility (Jarvis, Kantor and
Cloke, 2009), last mile connectivity (Marfatia, 2019) etc. Exclusions can be
especially exacerbated for some individuals during the process of “moving through”.
For example, individuals of advanced age or those with limbic disabilities are
particularly affected by lack of supporting mobility infrastructure. Tournier and
Vidovićová (2021) highlight the mobility exclusions faced by individuals in advanced
age groups and how this shapes their life experiences.
Review of mobility infrastructure further highlights that exclusion in this domain is
often measured through mobility i.e. mobility is a visible impact that articulates
exclusion.
3) Safety: Considerations of safe access and safety in mobility are key to create
inclusive environments. A variety of literature, projects and initiatives discuss lack of
safety as an important measure of exclusion and its close relationship to gender &
identity (Safetipin, Creating Safe Public Spaces for Women, n.d.).

Socio-politics in Space: Interacting with One Another

As illustrated by Jacobs (1993) in her seminal text, the presence of others in a
space can create natural surveillance and a sense of safety which this paper has
previously established is an important measure of exclusion. Additionally, activities
such as street vending and resultant interactions can promote a greater sense of
belonging and thus, safety. They also have the potential to generate community
networks and a sense of public ownership which can be important deterrents of
exclusion. Conversely, as depicted in fig 2., a lack of public presence can alienate
and heighten anxiety & lack of safety.

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LAKSHMI SRINIVASAN

The Interrelationships Between the Four Components

Figure 5. Concept mapping of the framework, Source: Author

The experience of socio-spatial exclusion can be articulated through four concepts

described previously in this section.:
- Identity of the individual, as a condition for exclusion (people)
- Accessibility and Mobility as a measure or impact of exclusion (moving
through)
- Space as an instrument or catalyst of exclusion (space)
- Interactions with other people in space or the lack thereof as catalysts or
deterrents of exclusion.
Thus, exclusion can be understood using the framework of “people moving through
space”.

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 People Moving through Space: Towards a comprehensive framework to decode spatial exclusion

People Moving Through Space: Demonstrating The

Framework Using Case Studies

Figure 6. Different material infrastructure required for different actors to to be included in the larger
economy of the camp, Image Source: (Srinivasan, Zhang, Li, Pang, 2017)

Identity & Space:

The experiences of inclusion & exclusion of each individual is deeply intertwined
with their identity. Temkin (2001) argues that the focus of studies on inequalities
must focus on individuals as opposed to groups (based on racial identity, gender
identity etc.). Figure 6 depicts the example of how three individuals2 residing in
Zaatri refugee camp, Jordan while sharing the same larger geographic space of

2
In the project, these three individuals were fictional identities constructed based on interviews
conducted in the refugee camp. The fictional identities were constructed to preserve the anonymity of
those interviewed. Ethical approval to use interview data for design was obtained during the course of
the academic project. Scenario games (Binet, Bunschoten and CHORA, 2001) were used as the
methodology to develop narratives about these three fictional individuals.

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LAKSHMI SRINIVASAN

residence, the refugee camp, and belonging to the same larger socio-political group
could have different qualifications and competencies. They would therefore be in
need of different types of material infrastructure & spaces in the camp to be
included in the economy of the camp and the neighbouring city (Amman).
Therefore, this implies that:
- the type of exclusion is dependent on the individual’s identity and
- the physical space and material required to alleviate exclusion is dependent
on the same.

Access & Space:

Figure 7 shows an analysis of the changes in material realities (“Positive Impact”)
and potential for further change (“Need for Development”) created by the UN
Habitat finalist project at Audi Unaio at Curitiba, Brazil. In this redevelopment
project, creating material realities that improved access to the city (urban mobility)
and to basic services was one of the primary instruments used to eradicate social
exclusion.
For example, before the redevelopment, situated in the primary floodplain, the
favelas (informal houses) and the unpaved streets in Audi Uniao were constantly
damaged due to recurring floods. The situation was worsened by the lack of a
planned drainage system. The narrow roads also made it difficult for buses or larger
vehicles to enter the shantytown causing decreased urban mobility. In summers,
due to unpaved roads, the air in the neighbourhood was constantly dusty risking the
health of the inhabitants (Srinivasan, Kouri, Lagunes Trejo and Gamez, 2017).

Figure 7. The different material infrastructure that helped create inclusion (positive impact) in Audi
Unaio and the material infrastructure that can be improved to make the space more inclusive,
Source: (Srinivasan, Kouri, Lagunes Trejo, Gamez, 2017)

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 People Moving through Space: Towards a comprehensive framework to decode spatial exclusion

The re-development initiative was not limited to creating housing but also facilitated
road widening and paving of the streets. Simply paving the crucial areas of the
shantytown did much to the development of the community. The paving prevented
dust clouds from forming in the streets and promoted health & well-being. Formalised
roads paved in asphalt, creates opportunity for larger vehicles to enter the
shantytown and move through it improving its allowance for urban mobility. Wider
roads also created the possibility for larger public transport (Srinivasan, Kouri,
Lagunes Trejo and Gamez, 2017). This clearly illustrates the interdependency of the
quality of space and access as cause/instrument and effect/impact respectively.

Figure 8. Visualisation of tactical intervention proposed to convert a dark pockets of space at night
into a space that creates opportunities for natural surveillance, Source: (Srinivasan, 2017)

People Moving Through Space

As previously discussed through Figures 2 and 4, young women were excluded in
Kasturba Nagar MRTS station, Chennai at night. Further, the quality of physical
space which does not allow visibility from other parts of the station and the
darkness in this space catalysed the exclusion. A simple solution was proposed in
the design thesis that studied this exclusion as shown in Figure 8. Lighting and a
temporary public exhibition space introduced in the dark pocket can boost natural
surveillance from exhibition visitors, encourage regular maintenance of lighting and
thereby promote a sense of safety.

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LAKSHMI SRINIVASAN

Figure 9. The instances and inferences from the three case studies to demonstrate the validity of the
framework proposed in this paper, Source: Author

Application in Design Studios

Understanding Citizen Participation

While participatory activities and co-design aren’t within the scope of the spatial
experience of exclusion, the degree of involvement of citizens in spatial decision
making can, to a great degree, affect the experience of exclusion or inclusion. The
framework can be used as a skeletal structure to generate questions about the
effectiveness of participative strategies when performing case studies of best
practices (Figure 10). These questions can be used to generate discussions on
where the design processes followed feature on the citizen ladder of participation
(Arnstein, 1969).

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 People Moving through Space: Towards a comprehensive framework to decode spatial exclusion

Figure 10. A concept mapping of a series of questions generated to understand the effectiveness of
co-design and participative strategies used in design processes based on the framework proposed in
this paper; Source: Author

Enhancement of the spatial design process

Integrating understandings of spatial exclusion under one holistic framework has
the potential to be incorporated in the following steps of the spatial design
pedagogy and practice:
a) Introductory Theoretical Framework: It can serve as a comprehensive starting
point and introduction to the typologies of spatial exclusion in a simple manner.
b) Critical case studies - to analyse an existing project or built environment critically
and help identify the conditions, instruments and impact for inclusion or exclusion.
Figure 11 illustrates a uniquely interconnected series of question prompts
generated based on the framework proposed which can be directly used in the
studio space to help students critically examine case studies. Alternatively, this
could also be used as a reflective framework at the end of the design process
where the students use the prompts to evaluate their design output for exclusion &
inclusion.

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LAKSHMI SRINIVASAN

Figure 11 depicts a concept mapping of a series of questions generated based on the framework
proposed in this paper; Source: Author

c) Ideation: The framework possesses the potential to generate tools and methods
similar to the one depicted in Figure 11, that focus on design ideation responding to
exclusion.
Therefore, incorporating this framework within the studio can make the design
process more responsive to different types of spatial exclusion and facilitate active
integration of theories of inclusion in the design process.

Acknowledgements: I acknowledge the support and contribution

of Mr. Jose Roberto Lagunes Trejo, Ms. Hlektra-Ioulia Kourh, Ms.
Sofía González Gámez in co-creating the case study on Audi
Unaio, Curitiba, Brazil (section 5, fig 7). I also acknowledge the
support and contributions of Mr. Li Hua, Mr. Beimeng Zhang, and
Mr. Houfai Pang in co-creating the design project based in Zaatri
Refugee Camp, Jordan (section 5, fig 6). I also show my gratitude
to Dr. Nishat Awan, Dr. Krzystof Nawratek and Dr. Aya Musmar
for their guidance and supervision in my thesis project featured in
this paper (section 5, figure 8)

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AUTHOR’S NAMEs [Running header, even pages. Leave as is for blind peer-review]

Academic Posters
Abstracts

Beyond Ageing Stereotypes: p.208

Imagery & iconography
Gerard BRISCOE, Ivelina GADZHEVA and Imran NAZERALI

Determining the Social Value of Design: p.209

Ageing in place
Lydia Lux ALEXANDER and Simon SCHRAPEL AM

Service Design Proposal for a Holistic Care Ecosystem to p.210

Manage Polycystic Ovary Syndrome
Yashasri SADAGOPAN

Understanding Gender Bias in Pain Assessment and p.211

Designing for Equitable Care Delivery:
Enabling equitable pain management
Anubhuti GUPTA

Design and Meaning Making through Collages and Language p.212

Diversity in North Central Florida
Valentina SIERRA-NIÑO

Museums for All? Project Svaritha: Designing Empathetic p.213

Museum Experiences for Socio-Economically Disadvantaged
Children:
A case study from the Indian Music Experience Museum
Rachel (Tiggy) ALLEN, Shivani SHAH and Lakshmi RAGHU

Computational Design Experiment for Older Adult’s Footwear: p.214

Field-driven approach and product design applications
Sheng-Hung LEE, Maria C. YANG, Joseph F. COUGHLIN and Alejandro
CARCEL LOPEZ

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 Exploring People’s Behavior Through Tracking Assistive p.215
Technologies:
Ultra-wideband wireless technology and applications
Sheng-Hung LEE, Olivier L. de WECK and Joseph F. COUGHLIN

Sensory Nourishment: p.216

Exploring inclusive design methods within fashion practices
Maureen Selina LAVERTY

Intersectional Design: p.217

Design as a tool for social equity
Josef PACAL

Technology Futures Roadmap for the Longevity Economy p.218

Gerard BRISCOE

The Inclusive Approach: p.219

A methodology of the fundamental principles of inclusive design
Daisy POPE

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 INCLUDE 2022. Unheard Voices
11th Inclusive Design Conference
Helen Hamlyn Centre for Design
Royal College of Art London, UK
22-23 September, 2022

Beyond Ageing Stereotypes

Imagery & iconography

Gerard BRISCOE*
Royal College of Art
Ivelina GADZHEVA
Royal College of Art
Imran NAZERALI
Royal College of Art

Ageism is a relatively modern construct arising from significant increases in life

expectancy. For example, Stone Age representations of older people simply
noted differences in hair colour. Frailty stereotypes are unrepresentative,
because the majority of older people have diverse functional capacity.
Nonetheless, ageism within the media is widespread, with older people, even
in contemporary dramas, often limited to stereotypes of snowy-haired invisible
grandparents or homeless people. Similarly, prevalent icons of older people
often utilise stereotypes of physical frailty. A notable example is the 1981
United Kingdom road sign for slower, frail people crossing the road, which is
designed to notify drivers to reduce vehicle speed. It depicts a frailty narrative
that has become the archetype for iconography of older people. Such
stereotypes lead to the design of digital technologies focusing on healthcare,
rather than desires and aspirations. So, we suggest an alternative iconography
for older people, moving beyond stereotypical physical frailty, and approaches
to addressing ageism stereotypes in wider society through popular media. We
conclude by moving beyond ageing stereotypes, counterbalancing the mostly
negative ones to affect changes in perceptions of popular culture, which is
critical not only for the older people of today, but also our future selves.

Keywords: ageing; stereotypes; icon; media

* Contact: Gerard Briscoe | e-mail: [Link]@[Link]

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 INCLUDE 2022. Unheard Voices
11th Inclusive Design Conference
Helen Hamlyn Centre for Design
Royal College of Art London, UK
22-23 September, 2022

Determining the Social Value of

Design
Ageing in place

Lydia Lux ALEXANDER*

Designer/Researcher, Uniting Communities
Simon SCHRAPEL AM
Chief Executive, Uniting Communities

Determining the social value of design: ageing in place as part of a vibrant

urban community that includes later living, specialist disability accommodation,
commercial tenancy, short stay accommodation (platinum level accessibility) a
function centre and social/welfare/human services delivery.
Using an innovative Social Value Framework developed for this case study,
this project will investigate whether the social benefit of building mixed-use
vertical communities can be quantified with specific benefit for later living,
including end of life stages. The project will establish the multi-dimensional
impacts of such a development in practice, giving a voice to the consumer
whose desire for an urban presence in a diverse and inclusive community has
been consistently underrepresented in Australia.
The project uses citizen science for real time auditing of the built environment
by residents and users; smart technologies for environmental and behavioural
monitoring; and data analytics and design automation for spatial analysis of
building use. The results will inform new models of sustainable high-rise,
mixed-use buildings providing evidence for the international application of
diverse, vertical communities that value the inclusion of community from across
the life stages.

Keywords: ageing in place; social value; later living in mixed use

developments; building community

* Contact: Lydia Lux Alexander | e-mail: [Link]@[Link]

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11th Inclusive Design Conference
Helen Hamlyn Centre for Design
Royal College of Art London, UK
22-23 September, 2022

Service Design Proposal for a

Holistic Care Ecosystem to Manage
Polycystic Ovary Syndrome
Yashasri SADAGOPAN*
frog design

Polycystic Ovary Syndrome (PCOS) is a chronic endocrine condition and is one

of the leading causes of female infertility. It is incurable and linked to long-term
health risks but can be controlled and managed well when treated holistically.
Since there is no standardised treatment and management strategy followed,
the process of finding long-term relief is complex and tiring. This poster first
investigates the journey of patients with this condition, their unmet needs and
problems while receiving care, and existing treatment protocols for managing
the condition. Then, the gaps in the ecosystem are understood and opportunity
areas to alleviate the same are derived. Finally, a service design concept for a
holistic PCOS care ecosystem that offers comprehensive, personalised long-
term support to help patients manage the condition effectively and thus improve
their quality of life is proposed.

Keywords: service design; PCOS; care ecosystem; management

* Contact: Yashasri SADAGOPAN | e-mail: yashasri.s@[Link]

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11th Inclusive Design Conference
Helen Hamlyn Centre for Design
Royal College of Art London, UK
22-23 September, 2022

Understanding Gender Bias in Pain

Assessment and Designing for
Equitable Care Delivery
Enabling equitable pain management

Anubhuti GUPTA*
MSc. Graduate, KTH Royal Institute of Technology, Stockholm

Historically being inclined towards the average white male, the healthcare
systems and processes are not equitable, and pain management follows suit.
Women’s pain has been disregarded, tagged as hysteria and misattributed to
psychological reasons for a long time. With lesser research on the female body,
women being seen as a weaker and emotion-driven gender, and a distorted
understanding of sex and gender may lead to delayed and improper pain
management for women. The study captures how gender norms and biases
affect the actions and behaviours of the primary actors (patients and healthcare
professionals (HCPs) involved in the pain management process. It also
highlights the downstream effect on the treatment delivered. Service design
approach, supported by qualitative research methods was used and the
findings are presented as a perception-communication-assessment model,
focusing on the primary actors and their interaction. Solutions explored in the
work aim at changing the actions and decisions of the actors to enable
equitable care delivery in acute care settings. Aiming at Equity through
Empathy, the outcome of the work is a design brief for a pre-consultation tool
to facilitate patients’ understanding of their pain and clearer communication
with HCP thus bringing more trust to the process.

Keywords: gender bias; pain assessment; equitable care delivery; service

design

* Contact: Anubhuti Gupta | e-mail: 97anubhuti@[Link]

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11th Inclusive Design Conference
Helen Hamlyn Centre for Design
Royal College of Art London, UK
22-23 September, 2022

Design and Meaning Making

through Collages and Language
Diversity in North Central Florida
Valentina SIERRA-NIÑO*
University of Florida

North Central Florida is not usually perceived to be as linguistically diverse as

other parts of the state such as Miami or Orlando. However, there is a significant
population of migrants who speak languages other than English. In contexts of
global migration, language barriers can increase when language diversity is not
properly recognized, making it difficult for those not speaking the predominant
language of a place to actively participate and feel included in their
communities.
Through a set of postcards with collages, the author intends to raise awareness
of the linguistic diversity in North Central Florida by visualizing the meanings
people assign to their languages and the obstacles caused by language
barriers. The collages were designed based on interviews with multilingual
community members. Exploring and negotiating the images and their meanings
with participants brought to light how other aspects of their identities such as
race and religion are connected to language.
The results show that the collages, as a visual language, have the potential to
decentralize the weight of spoken and written languages. The collages can work
as inclusive platforms to make sense of information and facilitate the
participation of multilingual individuals in contexts where there are language
barriers.

Keywords: collages; language justice, language diversity

* Contact: Valentina Sierra-Niño | e-mail: [Link]@[Link]

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11th Inclusive Design Conference
Helen Hamlyn Centre for Design
Royal College of Art London, UK
22-23 September, 2022

Museums for All? Project Svaritha:

Designing Empathetic Museum
Experiences for Socio-
Economically Disadvantaged
Children
A case study from the Indian Music Experience Museum

Rachel (Tiggy) ALLEN*

Project Lead, ReReeti Foundation
Shivani SHAH
Architect & Research and Administration Assistant, ReReeti Foundation
Lakshmi RAGHU
Project Coordinator, Indian Music Experience Museum

Children from socio-economically disadvantaged backgrounds (CfSDB) often

lack access to cultural institutions like museums. An inclusive musical
immersion experience supporting holistic developmental learning, Project
Svaritha, was designed by the Indian Music Experience Museum in partnership
with ReReeti Foundation for 500 such children. Following a best-practice
review, using a participatory action methodological approach, data was
gathered from 125 children, 20 caregivers, & 8 child-rights advocacy
professionals through bilingual surveys, focus groups and interviews. The tour,
which over 500 children have now experienced, was designed around three
learning outcomes. Additionally, sector best practices were identified and used.
Impact evaluation demonstrates positive influence on children’s sense of
belonging, clear learning outcomes, and many asking to deepen engagement.
This child-led research provides unique insight into children’s lives and a
blueprint for museum engagement programmes with under-represented
audiences. Universal design principles can create impact, and conversely,
exclusivity can be an inclusive practice.

Keywords: social impact of museums; exclusivity=inclusion; child-led

participatory; research accessible design

* Contact: Rachel (Tiggy) Allen | e-mail: [Link]@[Link]

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11th Inclusive Design Conference
Helen Hamlyn Centre for Design
Royal College of Art London, UK
22-23 September, 2022

Computational Design Experiment

for Older Adult’s Footwear
Field-driven approach and product design applications

Sheng-Hung LEE*
Massachusetts Institute of Technology Integrated Design and Management (IDM)
and Department of Mechanical Engineering
Maria C. YANG
Massachusetts Institute of Technology Department of Mechanical Engineering
Joseph F. COUGHLIN
MIT AgeLab
Alejandro CARCEL LOPEZ
nTopology Inc.

The purpose of the study is to build tailor-made footwear soles for older adults
through field-driven design and technology to satisfy their unmet needs and
respond to the two research questions: 1. How to translate people’s feet
pressure data to shape the three-dimensional model of footwear soles to
generate customized products? 2. How has the field-driven design approach
transformed the roles and responsibilities of product designers and thus
shaped human-centered design (HCD)?
One pervasive effect of aging is people’s feet undergo a significant loss of
cutaneous touch and pressure sensation. Their feet gradually become
deformed and asymmetric depending on health, lifestyle, and walking postures.
Mobility is a key factor to measure their life independence and we think
footwear soles are the product most directly linked to mobility.
Field-driven design is a computationally lightweight process that is applied to
three-dimensional objects through a single mathematical formula reinterpreting
a solid body. It has made the process intuitive to precisely control models,
simulate results efficiently and effectively. This study showed how we
translated feet pressure data to rebuild comfortable, safe, and customized
footwear soles for older adults and discussed the future roles of designers and
HCD impacted by field-driven design and technology.

Keywords: computational design; field-driven design; footwear; aging

* Contact: Sheng-Hung Lee | e-mail: shdesign@[Link]

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11th Inclusive Design Conference
Helen Hamlyn Centre for Design
Royal College of Art London, UK
22-23 September, 2022

Exploring People’s Behavior

Through Tracking Assistive
Technologies
Ultra-wideband wireless technology and applications

Sheng-Hung LEE*
Massachusetts Institute of Technology Integrated Design and Management (IDM)
and Department of Mechanical Engineering
Olivier L. de WECK
Massachusetts Institute of Technology Department of Astronautics and Engineering
Systems
Joseph F. COUGHLIN
Massachusetts Institute of Technology AgeLab

The purpose of the research is to analyze the relationship between space and
people’s behavior in confined environment and how we translate people’s
trajectory data into meaningful information. This informs the designers to build
a human-centered environment with and for users not only in physical space
alone but also in physical space enhanced by services. We attached ultra-
wideband (UWB) wireless radio technology operating between 3-10 GHz
frequency, designed for accurate positioning (up to 10 centimeters precise), to
conduct experiments by tracking people’s behavior in a defined six zones. Then
we captured people’s time spent in each zone and the frequency of people
entering each zone. Key learnings from the study: 1) translate people’s
behavioral data into business opportunities and 2) design needs to reconsider
users’ dignity and data privacy, helped us integrate UWB technology with space
design. Our goal is to transform a space design process by deciphering
people’s behavioral data to reconsider how to deliver a space experience and
build space models with and for people, catering to their desires and living
conditions. A future research question is to disentangle the variances between
users by the design of the space, vs. personal preferences and patterns of
behavior. Note: Part of the experiment obtained approval from the MIT
COUHES (Committee on the Use of Humans as Experimental Subjects).

Keywords: human-centered design; behavior data; indoor positioning; ultra-

wideband

* Contact: Sheng-Hung Lee | e-mail: shdesign@[Link]

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11th Inclusive Design Conference
Helen Hamlyn Centre for Design
Royal College of Art London, UK
22-23 September, 2022

Sensory Nourishment
Exploring inclusive design methods within fashion
practices

Maureen Selina LAVERTY*

NTNU

The sensations in our environments can be experienced at unbearable levels

by people on the autism spectrum and other neurodivergent groups, in
particular those with ADHD. Clothes are our most immediate environment, yet,
dominant fashion design practices rarely consider the impact of the sensations
they craft. Furthermore, clothes are conceived statically, which is at odds with
the dynamic movements in everyday life.
My ongoing practice-based PhD research actively includes 12 participants with
heightened sensory responses. Collaboratively we explore ways in which more
conscious clothing design can improve their well-being. Whilst these
participants have diverse sensory needs, they desire access to universal
emotional experiences.
This poster introduces my use of wardrobe studies to examine the relationship
between participants, their existing clothing and clothing aspirations. The
poster presents the insights gathered thus far that focus on kinaesthetic - tactile
- sonic sensory experiences. Preliminary studies had placed the focus of my
design practice on material properties. However, insights gathered in the
wardrobe studies have shifted the moving body to the forefront of my design
process to explore how it crafts sensations when in dialogue with materials.

Keywords: autism spectrum; ADHD; sensory processing; fashion design;

inclusive design

* Contact: Maureen Selina Laverty | e-mail: [Link]@[Link]

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11th Inclusive Design Conference
Helen Hamlyn Centre for Design
Royal College of Art London, UK
22-23 September, 2022

Intersectional Design
Design as a tool for social equity

Josef PACAL*
Imperial College & Royal College of Art

Today, we recognise in law and corporate practice that we must address

discrimination by race, gender, sex, and other identity indicators. The 'design
industry' directly shapes people's lived experiences. However, surveys show
that the field lacks diversity. A comparison of existing methodologies also
suggests a lacking awareness and capability of critically engaging with social
responsibility. As a result, design can contribute to paradigms of oppression
and discrimination.
This study proposes participatory design methods enabling explicit
consideration of end-users structural identities and pressures. Some of its key
components include the radical inclusion of marginalised stakeholders or
canvases for mapping oppressions based on the intersectional theory and
analysis of power dynamics surrounding the design context.
The framework was co-designed in workshops with diverse stakeholders. We
tested the process in an accelerated co-design case study, through semi-
structured interviews and think-aloud testing with practising design experts.
The early framework effectively and productively included marginalised
stakeholders in 'reimagining' a sexist tradition and achieved positive appraisal,
good fidelity and practicable outcomes.
It also raised exciting questions about its applicability by other designers;
transferability across different contexts; and commercial integration.

Keywords: design theory; intersectionality; participatory design; design justice

* Contact: Josef Pacal | e-mai: joe@[Link]

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11th Inclusive Design Conference
Helen Hamlyn Centre for Design
Royal College of Art London, UK
22-23 September, 2022

Technology Futures Roadmap for

the Longevity Economy
Gerard BRISCOE*
Royal College of Art

The Longevity Economy was recently estimated to generate nearly £11 trillion
of economic activity, and there is considerable interest in emerging digital
technologies that would bring living ‘longer’ closer to living ‘well’. While this
promise is inspiring, older people are rarely consulted in development, and the
Longevity Economy has an inherent duality, with the majority of older people
having diverse functional capacity, and only a minority being disabled.
Acknowledging this inherent duality leads to age-friendly design in the
development of mainstream digital technologies, moving beyond medical
products to aspirational age-inclusive design. However, this requires better
understanding the relationship between emerging digital technologies and the
future needs of older people in the Longevity Economy. We therefore
considered Technology Futures, specifically age inclusivity through an
enhancement model for the development of mainstream digital technologies.
Therefore, offering enhancement for all ages with diverse functional capacity,
inherently providing support for those with differing ability resulting from age or
disability. We then identified emerging digital technologies significant to the
inherent duality of the Longevity Economy. We present this in the form of a
Technology Futures Roadmap, based upon Gartner’s Hype Cycle, sharing our
understanding of the emerging technology landscape for our future selves.

Keywords: technology; digital; futures; roadmap

* Contact: Gerard Briscoe | e-mail: [Link]@[Link]

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11th Inclusive Design Conference
Helen Hamlyn Centre for Design
Royal College of Art London, UK
22-23 September, 2022

The Inclusive Approach

A methodology of the fundamental principles of inclusive
design

Daisy POPE*
Nottingham Trent University

From the first use of the term inclusive design in 1994, to it’s definition in 2005
by the British Standards Institute, society and daily lives have transformed.
Although the original focus was on design for the elderly, inclusive design has
broadened and is now used to consider wider diversities. This led to the
question: What is inclusive design today? The aim was to identify the
fundamental principles of inclusive design with the objective of creating a
methodology to educate young Designers.
The project involved a research triangulation to address the aim and identify
gaps in the current toolkits. This involved reviewing toolkits; interviews with
seven participants, from Designers to Professors; and a design case study by
the Author.
Thematic analysis was used to quantify key themes of the interviews to enable
synthesis with secondary research and the case study. This analysis led to the
inclusive design principles: empathy, community, and diversity.
This poster presents The Inclusive Approach. A methodology that
accommodates any project, from the design of a utensil, to avoiding artificial
intelligence bias. This research demonstrates using The Inclusive Approach, it
is possible to build on the roots of inclusive design to support diversities that
better reflect today’s society.

Keywords: design methodology; diversity; inclusive design; empathy

* Contact: Daisy Pope | e-mail: [Link]@[Link]

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