Framing diversity: designing hearing aids from a deaf culture perspective

Abstract

Deaf people are proud of their culture and the fact of not being able to hearing is rendered secondary to the positive experiences created by their social lives and 250-year-old history and culture. This reality is often misled by the adoption of medical criteria which regard Deafness as a medical condition measured against the "norm" of hearing people. This paper presents a research-through-design project which developed smart jewels to counteract the stigma of disability addressing functional and cultural needs of Deaf people. Workshops were organised involving Deaf people, makers/engineers, designers and Italian sign language interpreters who were engaged in a Thinking-through-making process where the experience of Deaf participants was exploited to drive embodied explorations of future hearing aids. The design case calls for a participatory design model in which designers and users can co-create solutions addressing not only the (dis)abilities of the body but and more importantly, the human experience.

Full text

Framing diversity: designing hearing aids
from a deaf culture perspective.
Patrizia Martia*
aDepartment of Social, Political and Cognitive Sciences, University of Siena, Siena, Italy
*marti@unisi.it
Abstract | Deaf people are proud of their culture and the fact of not being able to hearing is
rendered secondary to the positive experiences created by their social lives and 250-year-old
history and culture. This reality is often misled by the adoption of medical criteria which regard
Deafness as a medical condition measured against the “norm” of hearing people. This paper
presents a research-through-design project which developed smart jewels to counteract the
stigma of disability addressing functional and cultural needs of Deaf people. Workshops were
organised involving Deaf people, makers/engineers, designers and Italian sign language
interpreters who were engaged in a Thinking-through-making process where the experience
of Deaf participants was exploited to drive embodied explorations of future hearing aids. The
design case calls for a participatory design model in which designers and users can co-create
solutions addressing not only the (dis)abilities of the body but and more importantly, the
human experience.
KEYWORDS | DIVERSITY, DEAFNESS, HEARING AIDS, SMART JEWELS, PARTICIPATORY
DESIGN

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1. Introduction
According to the World Health Organization (WHO) (WHO, 2018), 466 million people
worldwide, that is, over 5% of the world’s population, have moderate to profound hearing
loss (HL) in both ears (Tucci, 2010). Disabling hearing impairment in adults refers to hearing
loss greater than 40dB. It is estimated that by 2050, over 900 million people will have
disabling hearing loss.
The numbers are impressive, and reflect a very complex and nuanced reality where deafness
and hearing impairment are often misunderstood.
First of all, it is necessary to distinguish between the terms physically deaf and culturally
Deaf. A small ‘d’ is used when referring to people from a medical perspective, while a capital
‘D’ is used when referring to people culturally defined as Deaf (Woodward, 1972).
Deaf people (with a capital “D”) have little or no hearing ability. They use the Sign Language
of the country where they live as their primary language. Even if some of them may hear
environmental sounds and understand some speech, they identify themselves as a linguistic
minority.
Deaf people feel that they belong to the “Deaf Culture”, an ethnic minority with a defined
language composed of verbal (signs) and non-verbal elements (facial expressions and
postures), communication and social protocols, forms of artistic expression, entertainment
and recreational activities (e.g., sports, travel, and Deaf clubs). Being part of a cultural
community means that they do not feel impaired or disabled.
Oral and late deafened deaf (with a lower case “d”) also have little or no hearing, but, unlike
Deaf people, they typically do not use Sign Language as their primary language. Oral and late
deafened people do not identify with the “Deaf Culture”.
Despite the benefits that people with HL can obtain from use of hearing aids and assistive
technology, many of them refuse to use them (Vernon and Pratt, 1977). The main reasons
for not owning/using hearing aids are the denial of the problem, discomfort, a sense of
foreignness, and aesthetics (“it is a foreign object deep in the ear”, “it pinches”, “it hurts”, “it
is too big”), shame, social rejection and stigmatisation. This suggests that the hearing aids
address HL in a way that is technically efficient but does not take the user’s experience into
due consideration.
Considering deafness from a sociocultural perspective, rather than as a medical problem or
insufficiency to be compensated, implies addressing a complex tangle of needs of D/deaf
people that go beyond hearing compensation. We argue that disability should not be
regarded as a problem to solve or a lack to compensate but as a design opportunity (Pullin,
2009).
In this paper, we introduce the design case, describing the methodological approach that
resulted in development of an interactive jewellery system composed of interactive modules

Framing diversity: designing hearing aids from a deaf culture perspective
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which continuously sense the acoustic qualities of the environment and notify the wearer of
the occurrence of specific sounds through micro-movements, vibrations and light patterns
(Marti & Recupero, 2019). The paper concludes with a set of recommendations that can
support designers of future assistive devices in engaging vulnerable stakeholders, in
particular Deaf people, as equal partners in the design process.
2. The Design Case
Quietude (www.quietude.it) is an EU project which develops assistive devices for people
with hearing impairment and HL. It was funded within the H2020 WEAR Sustain
(https://wearsustain.eu/) programme.
The project adopts a participatory design approach (Bjerknes et al., 1987, Smith et al., 2018)
to learn about inspirational and actionable insights into the socio-cultural practices and
expectations of D/deaf people.
Participatory approaches to design (Sanders et al., 2008) engage stakeholders in co-creating
artefacts destined for them, ensuring that their viewpoint and interpretations are
considered in research throughout the design process. These methods are pursued
throughout the entire research project with the goal of not just empirically understanding
the problem at stake, but also envisioning, shaping, and transcending it in ways users find
satisfactory (Spinuzzi, 2005).
2.1 Workshop series
The project included two workshops which were adapted to respond to different forms of
expression (Sanders et al., 2008). Activity based on visual expressions, material exploration
and hands-on techniques intertwined with verbal discussions mediated by Italian sign
language interpreters.
Workshop 1
The initial inspirational workshop took place over six days in the Fab Lab of the University of
Siena (Italy), with the involvement of four women who had been Deaf since birth, two sign
language interpreters, an ethicist and a mixed group of designers, technology experts and
makers (Marti, Iacono & Tittarelli, 2018). The group of Deaf participants was composed of an
architect (40 years old), a psychotherapist (41 years old), a special education teacher (30
years old), and a university student (21 years old). A free and informed consent form was
signed by all participants.

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The aim of the workshop was to inspire each other, encourage empathic understanding of
Deafness and HL, and start developing concepts of hearing aids to address some concerns of
the current devices.
On Day 1, participants were prompted to reflect on feelings of Deafness which were mapped
on body maps using simple post-it notes (Figure 1).
Figure 1. Body maps.
For example, embarrassment and shame were located around the ears and referred to
hearing devices. Originality was located on the hands to underline the unique features of
sign language.
Day 2 focused on selecting forms and materials (Figure 2) and experimenting with simple
vibrations motors (Figure 3). Deaf and hard of hearing people are familiar with the use of
vibration. Though not all participants perceived the vibration in the same way, the neck, the
bones around the ears and the wrist seemed to be the parts of the body most sensitive to
vibration.

Framing diversity: designing hearing aids from a deaf culture perspective
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Figure 2. Exploration of materials.
Figure 3. Experimenting with vibration motors.
Day 3 focused on developing concepts; Days 4–5-6 were devoted to materialising ideas and
developing low-fidelity prototypes (Figure 4):

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• A bobby pin with parts that move according to the ambient sound
detected by directional microphones embedded in a brooch. This object
signals deafness to others and notifies the wearer of crucial sound
events.
• An armband that translates different sonic qualities in the environment,
including range, volume and direction, into vibrations.
• A 3D shape-change necklace that expressively enacts live or recorded
sounds, translating the sounds into micro-movements.
Figure 4. Bobby pin, armband and 3D shape-change necklace.
In this activity of thinking-through-making (Ingold, 2013) the prototypes served as a
vehicle for generating research questions and collecting complex needs/requirements in a
research through design process. Discussion topics included:
1. Awareness about personal sounds (e.g., doorbell, name, etc..) and public
notifications, such as alarms, announcements in public spaces, and more.
2. Safety to prevents sounds requiring a quick response from going unnoticed.
3. Personalisation according to individual preferences and sensitivity.
4. Cross-modal experience of sound through sight, touch, on-body vibrations.
5. Aesthetics: hearing aids should be beautiful, smart and comfortable to wear.
Workshop 2
The second workshop was hosted by Mason Perkins Deafness Funds Onlus, a non-profit
organisation which provides services and training for the deaf community in Siena (Italy).
The organisation supported the project, facilitating contact with the local deaf community
and providing interpreters. In this second workshop, we tried to balance the number of Deaf
and hearing participants and also to propose a place that was familiar to the Deaf experts, to
give them more confidence in their ability to contribute. The workshop lasted 1 day, in

Framing diversity: designing hearing aids from a deaf culture perspective
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consideration of the difficulties that the Deaf participants had encountered participating in
the previous workshop for several days.
Five participants who had been deaf since birth and used the Italian Sign Language
participated in the session: 4 women from 20 to 50 years of age and one 17-year-old boy. A
free and informed consent form was signed by all of them. The group of hearing experts was
composed of a psychologist, a designer and two technology experts. Two design researchers
facilitated the workshop, supported by a sign language interpreter.
The aim of the workshop was to reflect on the needs and desires that emerged during the
first workshop, engage the participants in a thinking-through-making activity and evaluate
the prototypes developed during the first workshop.
Thinking-through-Making
After a card sorting activity aimed at identifying desires and prioritising the needs emerged
during the first workshop, participants were involved in a making activity based on a desire
selected from the previous phase. Various materials including textiles, paper, cardboard,
tape, pens, glue and hooks were put on the table. All participants were encouraged to
fabricate their own personal accessory, give it a name and present it to the others. The idea
was to transform what had been discussed verbally in the previous phase into design probes,
moving from abstract to concrete, to invite all participants to be kinaesthetically engaged
and to reflect together (Luck, 2018).
One Deaf participant made an accessory named “Alive”, a shape-changing jewel that moves
like a living object in response to sounds (Figure 5 left).

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Figure 5. The probe “Alive” (left) and “Stella” (right)
Another Deaf participant developed “Stella”, a bright necklace that looks like a shining star
to underline how important it is for hearing aids to be able to express a personal sense of
style (Figure 5 right).
The young boy developed an armband, explaining that he would like to wear an accessory
that can notify him of sounds that would otherwise go unnoticed (Figure 6 left). A Deaf girl
developed a belt to be placed around the shoulders or chest. The belt acts as an
undergarment that allows the wearer to feel sounds through vibrations (Figure 6 right).
Other probes were developed by the hearing participants to underline equality in the
participatory process.

Framing diversity: designing hearing aids from a deaf culture perspective
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Figure 6. Armband and belt probes
Evaluation of prototypes
The third part of the workshop was devoted to presenting the prototypes developed during
and after the first workshop, trying them out and collecting feedback. The evaluation
regarded both the jewellery and an early prototype of the App. The bobby pin, armband and
necklace were put on the table along with other prototypes developed at the Fab Lab after
the first workshop, including an interactive ring which translates sounds into lights in
continuous listening mode (Figure 7).

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Figure 7. The interactive ring prototype lighting up with sound
Participants were free to try out the jewels and comment on them. One of them who had
participated in the first workshop was amazed to see that most of the comments raised
previously had been integrated into the prototypes. These included the aesthetics of the
jewels, the possibility of exploring the sonic qualities of environmental sounds and therefore
addressing Deaf people’s curiosity about sound, and the possibility of choosing the accessory
that best suits their preferences.
The ring was criticised because it interferes with the use of sign language, in which the hands
must be used only to sign. The light could confuse the interlocutor.
The hair clip was discarded because the vibration produced by the embedded motor could
interfere with a hearing aid located behind the ear.
The necklace and the armband were considered the most interesting accessories. Deaf
participants stressed the importance of being aware of the environment (quiet or noisy) and
of recognising specific sounds of interest.
The last part of the workshop was devoted to evaluation of an early prototype of the App.
Before the workshop, the App had been demonstrated to one of the participants who
usually plays a leading role in the group. She drove the evaluation session by explaining the
functionality and performing a live demonstration of the service. Her mediation was
essential. She was able to create an atmosphere of trust and empathy which greatly

Framing diversity: designing hearing aids from a deaf culture perspective
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facilitated engagement of the other participants. No major defects were identified in the
App. The participants appreciated the ease of use, the possibility of customising the intensity
and type of feedback on the accessory, and the idea of creating a personal library of sounds
to be recognised by the jewels, alerting the wearer.
In summary, the two workshops marked important milestones in the design process in terms
of exploration of the complex needs of Deaf people, elicitation of requirements and
preliminary evaluation of early prototypes.
3. The jewellery system
After the second workshop, a suite of jewels was designed as a modular system to allow
different types of formal configuration and personalisation of use. The modules embed
sensors and actuators allowing self-actuation and kinetic modifications in the presence of
particular sounds.
The suite of jewels includes three necklaces which notify the wearer of incoming sounds
with different behaviours: dynamic light (Figure 8), vibration (Figure 9) and a change in
shape (micro-movement of the modules) (Figure 10). A video of the system’s behaviour can
be viewed at: http://www.quietude.it/wp-
content/uploads/2018/03/Quietude_DemoHD.mp4?_=1.
Figure 8. Necklace with dynamic light

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Figure 9. Necklace with vibration

Framing diversity: designing hearing aids from a deaf culture perspective
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Figure 10. Shape changing necklace
The formal design of the modules was inspired by a powerful metaphor that emerged during
the first workshop. One of the participants used the expression “feeling under water” to
describe deafness as hushing of the perception of sound.
Drawing on this metaphor, the suite of jewels was inspired by the undersea world. The
modules resemble sea urchin shells, and the colour palette reflects images of sand, deep
oceans and coral. The jewels were conceived as modular structures which can be assembled
to create the wearer’s own personal jewels. Modularity addresses the need that emerged
during the workshop for placing and playing out the jewellery on the parts of the body which
are most sensitive to vibrations and micro-movements.
The jewels are handcrafted: modules are sewn by hand, connectors are fabricated by
recycling flat connectors from obsolete computers, and, most importantly, no glues or
adhesives were used. In this innovative design, modules are connected through 3D-printed
interlocked supports. The system’s behaviour can be defined and fine-tuned through a smart
phone app that works with the accessories.
Modules are made using laser-cut eco-leather, felt or fabric petals which are folded and
sewn to create a shell-like shape (Figure 11).

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Figure 11. Sewed eco-leather modules
The electronic components are placed in an octagonal PCB that keeps the modules fixed and
stable in a horizontal position (Figure 12). Some modules contain electronic boards and
sensors (e.g. the Bluetooth communication board and microphone), some contain actuators
(e.g. LEDs, servo-motors, vibration motors), and others are empty, and are simply used to
add to the aesthetic value of the system. This modular system permits creation of a variety
of fashionable jewels, including necklaces, armbands, brooches, etc.
Figure 12. Laser cut module, electronic components and final seam

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The jewels can sense sounds in two different ways: through real-time continuous
monitoring, to notify the wearer of the frequencies and amplitudes of sounds in the
surrounding area; or upon occurrence of certain specific sounds, defined by the wearer using
the mobile app.
The necklaces with light and vibration behave differently. Instead of using simple on, off, and
blinking behaviours, we have adopted a richer vocabulary. Drawing on Harrison’s study
(2012) of what kinds of information are typically communicated by point lights, we designed
light and vibration patterns that follow the spectrogram of the incoming sounds (Figure 13).
The 3D shape-changing necklace performs micro-movements in response to external
sounds. The actuators embedded in the three necklaces are directly mapped to the intensity
and amplitude of incoming sounds bending them towards the lower centre of the module.
Figure 13. Embedded electronics
The combination of the micro-movements of the petals of different modules results in a
coordinate and expressive movement of the overall structure (Figure 14).

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Figure 14. Micro-movements of the shape-changing modules
3.2 Smartphone application
The jewellery system is connected to a smartphone application (Figure 15) permitting
personalisation of sound recognition in input and kinetic transformation and shape change
in output. The jewels and the smartphone communicate via Bluetooth.

Framing diversity: designing hearing aids from a deaf culture perspective
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Figure 15. Smartphone app
The app permits customisation of both input and output, with construction of a personal
library of sounds that can be monitored and replayed on demand through the accessories
(Figure 16). The key feature of the application is management of the kinetic, light or
vibration output on the basis of a comprehensive sound recognition process.
Figure 16. Smartphone app screenshots

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The user can create a library of sounds by recording personally meaningful sounds through
the microphone embedded in the jewels. These sounds are then labelled and stored in the
app, permitting real-time sound monitoring and on-demand playback.
4. Conclusions
This paper moves from an analysis of Boys’s (2014) research calling for a shift in the attitude
toward disability from a medical model to a sociocultural model.
Transforming hearing aids into fashion accessories is an attempt to stimulate reflection on
diversity and provoke a cultural shift, reconsidering the continuous entanglement between
disability and ability beyond the tendency to standardise or normalise human skills.
The design case described in the paper highlights the importance for the designer to
understand the sociocultural context of use as well as the meanings people give to the
designed artefact. In the project, this led to adaptation of participatory design methods that
engaged with the community and allowed persons with diverse auditory skills to contribute
and co-design solutions.
The proposed approach poses several challenges, due to cultural differences and
understanding of experiences of the participants, and due to suitability of methods and
techniques that may not be appropriate or need adjustment as highlighted also by Slegers et
al. (2014); Hendriks et al. (2015); Tucker (2015); Marti & Bannon (2009).
The challenges that emerged during the project are summarised in the following.
Prior knowledge of the deaf culture
Researchers and designers often have limited knowledge of deaf culture which is sometimes
confused with hearing impairment. They often rely on the reported experiences of their
stakeholders that are individual and sometimes fragmented or conflicting due to the specific
level and typology of deafness. To minimise this problem, some researchers suggest to
assign to the impaired participants the role of experts, hiring them as paid team members
(Hendriks et al., 2015). In our project, we learned the importance of forming a solid prior
knowledge of deaf culture before involving deaf people in participatory design. Deaf culture
includes practices related to a suitable arrangement of the working space that hosts the co-
design activities. In the DeafSpace project (https://www.gallaudet.edu/campus-design-and-
planning/deafspace) Hansel Bauman developed a catalog of architectural elements to design
built environments for deaf people (Hope, 2017). These include: ensuring proper sensory
reach (visual and tactile) in 360 degrees to extending Deaf people's awareness and making
spatial orientation easier; arranging space and proximity to allow signers maintain enough
distance to accommodate each other’s signing space when conversing; maintaining clear
visual communication while walking and conversing; avoiding shadow patterns and

Framing diversity: designing hearing aids from a deaf culture perspective
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backlighting that disrupt visual communication; preventing acoustic reverberation that can
be only distracting and also painful to deaf people use hearing aids or cochlear implants. All
these architectural elements have to be accommodated in any comfortable co-design space
for deaf people.
Choosing appropriate spaces for participation
Spaces of participation should not only comply with the guidelines reported above. They
should be also familiar to the deaf participants. The second workshop worked much better
than the first one since it was hosted at the Mason Perkins Deafness Fund Onlus, a familiar
place for the participants where the deaf community is used to meet and socialise.
Using the appropriate language
“Hearing impaired” is an equivocal term which mixed up people with different levels of
hearing loss, communication modes and cultural identities under one definition. Some deaf
people don’t like to be defined as “hearing impaired”, some others object to the word
“impaired,” which they feel implies that a person is flawed, deficient or imperfect. Using an
appropriate language is quintessential.
Choosing the right methods
In the project, we experimented with different methods for engaging deaf people in the
design process. However not all of them were equally successful. Activities involving abstract
thinking were less engaging, like the one focused on reflection on ways of accessorising the
body performed in the first workshop. Drawing from this experience, it is advisable avoiding
situations distant from the Deaf participants’ experience and imagery.
The mediation of interpreters
The co-design team has to include professional sign language interpreters to bridge the
communication gap between the deaf/hard of hearing and the non-signing language users.
The sign language interpreters are fundamental intermediary to create an atmosphere of
empathy and collaboration. They have to be professional, skilled and certified.
Equivalence in participation

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All stakeholders have to be equal partners in participatory design. In our project, some
methods proved to be particularly successful in achieving equality like thinking-through-
making during the second workshop. This stimulated creativity and joint reflection.
Encourage the role of leader
Even if in the co-design team there is not an assigned leader and the group dynamics are
free-flowing, leaders can show up in different ways. In our project, a deaf person
spontaneously took the responsibility of stimulating the activity showing integrity, empathy
for others, and promoting joint reflection. This happened in particular during the second
workshop, where a deaf person accepted to take the responsibility to drive the evaluation of
the app. She was able to understand the main goal of the activity and act accordingly. This
was tremendously successful. It is advisable to let deaf people drive informal evaluation
activity to facilitate the participation of the other deaf participants.
Ethical challenges
Beside practical ethical issues concerned with co-designing with vulnerable people (e.g.
managing the informed consent), there are other challenges related to the fact that
researchers and designers may feel insufficiently prepared for dealing with disable
participants. In our project we involved an ethicist who supported us in facilitating the
activity by ensuring an appropriate use of time (sessions were in total not longer than two
hours with several short breaks), selection on the sign language interpreters and space set
up. This turned to be a precious support.
Acknowledgements
Quietude has been developed in collaboration with a multidisciplinary team. I would like to
thank Iolanda Iacono, Michele Tittarelli, Simone Guercio, Matteo Sirizzotti and Annamaria
Recupero for their invaluable work on the human-centred design and system prototyping at
the Santa Chiara Fab Lab of the University of Siena. I would also like to thank Gianluca Daino
and Riccardo Zambon from T4All s.r.l. who developed the App. A deep gratitude goes to the
Deaf people who participated to the workshops and to Miriam Grottanelli De Santi,
president of Mason Perkins Deafness Fund Onlus who facilitated the contacts with the Deaf
community.

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About the Author:
Patrizia Marti is Associate Professor at the University of Siena. She is Rector’s
delegate of Santa Chiara Fab Lab where she manages participatory innovation
projects. Her research activity concerns designing systems facing cultural,
aesthetic and social issues through embodied experiences.