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Beyond Independence: Enabling Richer Participation through Relational Technologies

Alessandro Soro [email protected]

Queensland University of Technology Brisbane, QLD - Australia

Margot Brereton [email protected]

Queensland University of Technology Brisbane, QLD - Australia

Laurianne Sitbon [email protected]

Queensland University of Technology Brisbane, QLD - Australia

Aloha Hufana Ambe [email protected]

Queensland University of Technology Brisbane, QLD - Australia

Jennyfer Lawrence Taylor [email protected]

Queensland University of Technology Brisbane, QLD - Australia

Cara Wilson [email protected]

Queensland University of Technology Brisbane, QLD - Australia

ABSTRACT From ageing to education, from tourism to shopping, many systems and applications have been proposed that aim to free users from the nuisance of depending on others. In this paper, we problematise in- dependence and argue that when closely scrutinised, the purported aim to independence of many works in the literature appears to be a proxy for a broad range of related values, including agency, dignity, autonomy, freedom of choice, and participation. We unpack and reflect on the tensions and trade-offs that come with the quest for independent life. We explore these issues through two case studies: one on democratising IoT design for older adults; the other on digitally enabling person-centred approaches with people with intellectual disability. We propose that many design and research initiatives would be better served by a focus on the interdependent network of social relations, from family to friends, and the broader community, and on Relational Technologies capable of supporting a fulfilling participation in those networks.

CCS CONCEPTS • Human-centered computing → Collaborative and social computing theory, concepts and paradigms.

KEYWORDS Design, Independence, Interdependence, Ageing, Intellectual Dis- ability, Agency

ACM Reference Format: Alessandro Soro, Margot Brereton, Laurianne Sitbon, Aloha Hufana Ambe, Jennyfer Lawrence Taylor, and Cara Wilson. 2019. Beyond Independence: Enabling Richer Participation through Relational Technologies. In 31ST AUS- TRALIAN CONFERENCE ON HUMAN-COMPUTER-INTERACTION (OZCHI’19), December 2–5, 2019, Fremantle, WA, Australia. ACM, New York, NY, USA, 12 pages. https://doi.org/10.1145/3369457.3369470

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1 INTRODUCTION This paper reflects on the design of technologies aimed at sup- porting independence and contributes a critical perspective that brings to the fore the broader goals of supporting richer social re- lations, enabling digital interdependence, and creating Relational Technologies.

Much technical literature proposes designs intended to foster independence in all sorts of activities and for many different kinds of users, but the struggle for independence is rarely motivated or questioned, and is rather assumed as self-evident. Independence is configured as a desired state, initially to be achieved (as in economic independence, or independent thinking), then to be retained for as long as possible (as in independent living), to be regained if lost because of illness or age, and to be fostered for people living with a disability. Independence, thus conceived, can be unpacked into a multitude of related goals such as agency, dignity, respect, self- efficacy, self-sufficiency, autonomy, and self-determination. How- ever, while these values are sometimes spelled out in the literature, their role in enabling rich participation within a person’s network of relations is rarely made explicit. The result is a narrow vision of independence being promoted and implemented in designs that often do not really empower the intended users.

We further discuss these concepts through two case studies to better illustrate our position. The first case study, Make and Connect, is a project aimed at democratising the design and making of the Internet of Things (IoT). One key aspect of this research is to study how the IoT can support social engagement for older adults [5, 66], therefore offering an alternative to assistive technologies that does not undermine the person’s dignity. The second case study, the My Portfolio App suite, offers an outlook on the design of digital applications supporting person-centred approaches for people with an intellectual disability [17, 62, 80]. This project points to a need to re-conceptualise accessibility guidelines to consider the broader network of relations surrounding the ‘user’ and to include these as co-recipients of the technology.

We contribute the concept of Relational Technologies to exemplify and describe designs that are socially enabling, afford reciprocity in interaction, and let users participate in social interaction in their own terms. We argue that design and research initiatives, especially those aimed to support vulnerable users, would be better served by a focus on the network of social relations (family, friends, and

OZCHI’19, December 2–5, 2019, Fremantle, WA, Australia Soro, A., Brereton, M., Sitbon, L., Ambe, A.H., Taylor, J.L. and Wilson, C.

broader community) and on understanding how technology can support a fulfilling participation in, and interdependence within and between, these networks.

2 BACKGROUND The concept of independence has a somewhat troubled (and po- litically punctuated) history. Modern dictionary definitions of ‘in- dependence’ often are rather circular and self-referential as in the Oxford online Dictionary: ‘the fact or state of being independent’. Other sources, e.g. the online Cambridge Dictionary, insist on free- dom of choice, both in terms of political independence: ‘freedom from being governed or ruled by another country’; and personal independence: ‘the ability to live your life without being helped or influenced by other people’.

Early appearances of the word in European languages are rel- atively recent, dating back to the middle of the 17th century, an age of rapid European colonial expansion, hence the focus on po- litical independence. Those were also times of social and political turmoil throughout Europe, which resulted in shifting views of selfhood and of the relation between individuals and society [8]. The power of religious authorities was in decline, leaving people in search of moral guidance, and of earthly fulfilment in addition to (or instead of) faith in salvation in the afterlife. Social mobility (a concept virtually unknown throughout the middle ages and up to the early modern era) resulted in people striving to achieve a higher status against traditional roles. Terms such as consciousness and self-awareness started to make their appearance in the contem- porary literature, together with a growing reflection on individual aspirations and potentials, and on how to fulfil those potentials, within, outside, or in spite of, traditional social structures [8].

Given that the modern conception of independence was a result of European social and political unrest, as well as philosophical debate, it should be no surprise if not all cultures hold independence in the same high regard [45, 72]. Markus and Kitayama noted that an independent construal of the self is a response to the ‘norma- tive imperative’ prevalent in many Western cultures to ‘become independent from others and to discover and express one’s unique attributes’ [45]. On the one hand people assuming an indepen- dent self-view will conceive of themselves as autonomous and self- contained agents, with internal attitudes, feelings, and thoughts [30]. On the other hand people with an interdependent self-view reflect a perception that one’s own actions, feelings, and thoughts are to a large extent dependent on the relations with others [45].

Thus, what it means to be independent for individuals, and whether it is a value or not, depends on many factors, some of which tacit, other imbued of ideological positions that not always undergo critical questioning. Triandis and colleagues [73] noted how a concept of self-reliance can be interpreted as “I can do my own thing” by people that value independence, whereas it can mean “I am not a burden on [my community or family]” for people that see themselves as interdependent with their community, showing that a same attitude can be perceived in opposite ways. Markus and Kitayama discuss the example self-assertion, that can be perceived as authenticity or immaturity, and giving in, that can be taken as a sign of weakness or tolerance, depending to a degree on our leaning versus an independent or interdependent world-view [45].

Commitment to one or another ‘cultural imperative’ can be ob- served in many aspect of social life and is reflected in academic writing. Here independence becomes often almost a mantra, a goal to achieve in all aspects of personal, social, and professional life. A lack (or loss) of independence, is often configured as a prob- lem to address and solve across a range of research domains, from ageing to education to health care, and more. For example, in edu- cation, Johnson and Johnson noted how a focus on independence, bordering on principles of competitiveness and social Darwinism dominated schooling until the 1970s [35, 36]. The emphasis on in- dependence carries a risk of downplaying, or even obstructing, the concurrent role of cooperation, mutual support, and the network of interdependent relations that people rely upon to achieve any goal.

In practical terms these support networks are key to reaching one’s objectives, but they are also key to make life meaningful. Re- turning to the example of education, it is broadly accepted now that cooperative learning and teaching practices that leverage social interdependence result in the fostering of peer interaction and co- operative socialisation, producing stronger individuals and learning outcomes [35, 36]. In healthcare we observe similar objections to the representation of healthy living as an individual responsibility and a matter of independent choice [31, 49]. Instead, current stud- ies on the sociology of health and illness reveal how technologies designed to support an independent life risk to overlook the fact that healthy and independent living is predicated on complex social, economic, emotional, political, and cultural challenges, resulting in (and from) a network of interdependent people, institutions, and providers [31].

Thus, not only is independence actually very much dependent on a multitude of complex factors, but the very step of conceptualising independence as an end in and of itself, rather than as a mean towards one’s life goals, is problematic in many respects.

One, as noted above, is that not all people will conceive of inde- pendence in the same way, and for some independence may not be a value to maximise. A second issue is that independence often seems to go hand in hand with automation, with the notion that machines can learn what people need through observing their be- haviour patterns (see for example [25]). In such cases machine and human seem to be cast as independent entities, the machine and its sensors and data processing capabilities observing, while the human goes about being “independent” and passively monitored. But monitoring, while perhaps enabling some freedom or granting some peace of mind, also comes at a cost of a loss of privacy and self-confidence for the monitored [64], and casts independence as a commodity, a lifestyle choice within the reach of a click (see e.g. [31]).

Further problems come into focus when looking at specific cases, as we do in the next sections. Particularly, fostering or supporting independence is a key ambition of designs aimed at older adults and designs for people with intellectual disability. This ambition however rests on problematic premises.

Independence and Ageing. Supporting the ageing population to be independent through the help of technology is a growing re- search interest and the demand for these technologies is on the rise. Continuing to be autonomous and active is a common hope of older people, but the challenges of a weak body, social isolation, limited

Beyond Independence: Enabling Richer Participation through Relational Technologies OZCHI’19, December 2–5, 2019, Fremantle, WA, Australia

social roles and other negative associations of ageing stifle this hope [29]. In this rhetoric, products and services are continuously being designed and developed and there is a proliferation of monitoring technology and other prototype solution articulated in many forms to support older people’s independent living (see e.g. [40, 51, 55]).

However, as noted among others by Vines et al [75], Robertson et al [57], Soro et al [64], the identification of ageing with the loss of independence largely reflects prejudices about old age, and fears of what comes next. Sometimes, under the façade of the older person’s independence, the true goal of supporting the caregivers’ peace of mind is easily glimpsed, when not openly declared. Such ‘peace of mind’ is, by the way, often illusory: evidence is instead emerging that monitoring technologies can add to the anxiety of their users [46]. Even when a safety goal is reached, as noted by Bannon [7], these systems do not necessarily add to the dignity or agency of their users.

Older adults, on the other hand, are often concerned at the risk of social isolation potentially enabled by technology, the lack of human responders and the replacement of human assistance by technology [26]. Designs inspired by such stereotyped notion of ageing also seem to imply that “we become a time-consuming worry to our friends and family as we age and that engaging in normal social contact with us is neither desirable nor sufficient” [43].

Soro and colleagues noted a philosophical divide existing across much research on technologies for older adults [63]. Here a technology- centric vision is largely focused on creating technical ‘solutions’ to keep older adults safe, healthy and independent, while a human- centric vision insists on older adults’ values, skills, and goals. A key difference is that the latter vision often strives for empowering users and amplifying or maintaining their agency, while the for- mer effectively displaces agency towards the technology [63] and relegates users to a more reactive role of ‘monitored’ subjects.

Such philosophical polarisation also comes with rather different positions on what constitutes a ‘solution’ and on the problemati- sation of ageing and the supposed loss of independence. The HCI discipline is not new to charges of solutionism [50], and the do- main of technologies for ageing is particularly exposed to such ‘original sin’. Blythe and colleagues playfully explored this space with a ‘Solutionist board game’ that they played with thriving ultra octuagenary highlighting the limits of technological interventions [13] that are usually ‘seductive’ solutions to preconceived problems [12].

One key example is the emergency care pendant as part of a tele-care system that provides the assurance of immediate response to emergency and ensuring safety [1, 29, 39, 48]. Older people commented on how the emergency pendant noting that it is too big, uneasy to wear, it makes them look sick or how the pendant is not for them, but have found ways to use (or not use) the technology in their own terms.

Many studies, while revealing the socio-technical challenges of fitting technologies in the life and routines of older people, also show willingness to use them. On closer look, however, the inde- pendence provided by these technologies is possible because of a network of people (e.g. the operator at the end of a telecare system, the medical practitioners interpreting sensor data, the technicians that visit during technology breakdowns). This is emphasised in the work of Righi et al. [56], calling for a ‘turn to community’ in

the design of technology for older people. The study acknowledges that although older people have individual identities and needs, the meaning they make of a given technology is shaped by the communities they belong in.

In the same vein, Light et al [42] challenged the rhetoric of assistance and vulnerability to instead foreground older people’s agency and aspiration to remain engaged in life. This engagement usually entails self-responsibility with the involvement of others as people manage their changing capacities in the ageing process [14, 42]. In fact, the wellness of older adults (or of all people, for that matter) depends on a complex interplay between professional and informal caregivers, family, friends, the community at large, as well as the available technology [49, 64].

Naturally, the sustained use of these technologies involves com- munities of experts and practitioners that older people become a part of. It is important to note that older adults already belong in different communities, in the first place. Thus in supporting “inde- pendence” in the technologies we design, consideration of “situated and dynamic needs/interests” in relation to the communities[56] older people thrive in is valuable - to look at independence as not care or monitoring at a distance but as interdependence of a network of communities.

Independence and Intellectual Disabilities. For people with an intellectual disability, independence is a goal of acquisition, whether self-determined or initiated by family members or carers. In that sense, it is highly connected to learning life skills, including technology-supported life skills [47] (e.g. shopping with a credit card). People learn best when motivated [60], and as a result en- suring that they have a say in how they wish to become more independent, and that they are supported to develop independent thinking and decision making, is key. However, in this case even more than for other users, the role and limits of technological inter- ventions need to be nuanced, and generalisation is often potentially problematic. Bennett and colleagues [10] noted that while inde- pendence is often a taken for granted goal of research on assistive technologies, several scholars are drawing attention to potentially negative outcomes, such as perpetuating stigma, or representing the assistive technology user as incapable or vulnerable. Meryl Alper further questions the rhetoric of ‘empowerment’ in her book ‘Giv- ing Voice’ [2]. She notes that technologies aimed to support people with disability are often intended as means to “give voice to the voiceless.” Yet, she observes, these tools are sometimes still prone to reinforcing and perpetuating structural inequalities, and to dis- empowering the intended recipients through their deficit-focused value propositions and funtions.

In the field of Autism, independence is perceived as an implicit goal desired by parents, caregivers, and stakeholders, as well as an explicit goal in national curriculum and policy [52]. The societal assumption is that independence is a necessary and desired goal. Yet, for people with a significantly challenging conditions, such as for the minimally-verbal participants in the case studies that follow, this can never be fully interpreted as correct. Nevertheless, insofar as independence can be construed as a ‘right to flourish’ [24], it can be articulated as either decisional or executional. In this sense, supporting independence may be better framed as supporting the

OZCHI’19, December 2–5, 2019, Fremantle, WA, Australia Soro, A., Brereton, M., Sitbon, L., Ambe, A.H., Taylor, J.L. and Wilson, C.

person’s capacity to make decisions and exercising control over agents and equipment [24].

Independence in the context of autism and design has been described as a balancing act, built on the concept of structures and freedoms [44]. Individuals’ unique and personal strengths, interests, and abilities should certainly be supported and encouraged, and within these, freedom should be a central factor [52, 74]. However, without structure, many of those on the spectrum may experience extreme anxiety and frustration [6]. This structure, in turn, can only be built and sustained by a network of social actors who surround the individual [17].

While there is a significant unmet need for technologies to sup- port people with intellectual disabilities [CEO Endeavour Founda- tion speech to a forum in July 2015], people with cognitive impair- ments, often accompanied by motor impairments, typically have quite unique needs, relating to the particular manifestation of their impairment and their physical and social context. Commonly, there is an expression of a desire for the person to be able to have more control over their own lives [54]. If this cannot be expressed by the person themselves, it is almost always expressed by proxies and relatives [80]. In a study of families of daughters with Rett syndrome [32], all five parents wished for a device to support “any- thing that the daughter could do for herself”. Whether impairment is mild or severe, there is hope for technologies to enable greater self-determination, agency and expression [52]. But, predominantly, this is to facilitate action and interaction in a social context [54].

In the case of severe impairment, where there is intense depen- dence on others, enabling a choice to be made through a motor action or switch (see e.g. [54]) and thus providing some agency, is celebrated by carers and family. This can be seen as a path to expanding actions, interactions, and communication, that is, a path to greater richer relationships. In disability support organisations, common practice is to hold biannual personal planning meetings with individuals who use the service, their proxies and support workers. These person-centred planning configurations are per- ceived to represent “a paradigm shift away from expert professional control towards individual choice, personal empowerment and com- munity participation” [21]. The objective of these meetings is to plan out learning and practice activities according to these individ- ual objectives. Often, the overarching and assumed aim of these meetings is to empower the individual to the next level of indepen- dence, for example, learning to cook, learning to write, learning to drive and in some cases, living independently from their families [21]. However, while proxies often stress a need to support and achieve independence, it is very difficult to establish what kind of independence the person with disability may really want, in what terms, to what end, and how this can be scaffolded and realised in pragmatic terms.

Design for Interdependence. Switching focus for a moment from independence to interdependence, it is somewhat surprising in an age of global connectedness and social networking that interde- pendence is not a particularly strong focus of HCI research. In the HCI literature some works explored interdependence at an eco- logical and infrastructural level, but their positioning is somewhat a-political. For example, back in 1994, the theme of a CHI conference was ‘Celebrating Interdependence’, however, those few papers that

actually integrate the theme, really refer to the interdependence of sensory information [20] and interdependence of modules of a software system [33].

A European/North American cultural influence that is perva- sive in design research may have silenced to some degree more collectivist and interdependent world-views that are common in non-Western cultures [34, 45, 72], for example the paradigm of “con- nectedness of all” [81], articulated in the African concept of Ubuntu [37] that African scholars are now striving to promote in participa- tory design [11], and, in the Australian context, the role of family and community in designing technologies to support languages and cultural performance [69, 70]. Drawing from a different experience, exploring the interconnections between Western distributors and Chilean and Indian producers, Ann Light proposed the concept of Digital Interdependence, based on the idea of designing considering the ties within and between communities. In her work interdepen- dence is “a desired state in which links with others are recognised, acknowledged, developed and delighted in” [41].

This definition resonates loudly with founding principles of institutions whose mission is to support vulnerable users. A report on Promoting independence for people with disability produced for the Australian National Disability Insurance Scheme (NDIS) acknowledges that independence, in the context of living with a disability, involves “achieving autonomy, making decisions about one’s life and engagement in one’s community”, but also notes that this “is best achieved in equal valued partnership with others, i.e. as interdependence” [52].

Bennett and colleagues discuss interdependence as a lens to frame assistive technologies, noting that attention to interdepen- dence can reveal relations, the work done by people with disabilities, reciprocity in assistance, and challenge ability based hierarchies [10]. Below we will try to further expand this ideas outside of the assistive technology domain, here we note that technologies, whatever their goal, are arranged in place [29] and ’artfully in- tegrated’ within the networks of people, objects, skills, practices [68]. Designs that seek to foster independence should not focus on emancipating the individual from the networks of people and skills, but rather on enhancing, empowering, and if anything, on making these networks of inter-dependency wider and stronger.

Summarising, the concept of independence stems from very spe- cific economic, political, social, cultural, and religious contexts. In many cases it has driven policies on largely ideological grounds, for example in education, where principles of competitiveness and individualised curricula appear now at odds with principles of col- laborative learning. In HCI and design research, independence has offered a case study for technology-driven initiatives of assisted living, assistive technologies, monitoring technologies, and more, that promise autonomy for the user and peace of mind for the carers. On closer scrutiny however the independence provided by these technologies is a complex articulation of freedom of choice, agency, maintaining dignity, engagement, participation, and other values, whereas a simplistic conception of independence can incur the risk to stigmatise those who the technology intended to empower, further isolate them by disrupting the network of support they participate into, and ultimately replace a dependence on people

Beyond Independence: Enabling Richer Participation through Relational Technologies OZCHI’19, December 2–5, 2019, Fremantle, WA, Australia

with one (perhaps more economically viable, but certainly not as effective) on technology.

Independence then emerges as a problematic term, one to further unpack and problematise, in order to better understand the complex interplays existing within the network of relations, both social and technical, that people resort to in daily life. We explore these themes through two case studies. Make and Connect [16] is an exploration into democratising making and the Social Internet of Things [67] to empower people to imagine and create their own applications and smart objects. One key element of this project explored communication technologies to foster social engagement for older adults. The MyPorfolio suite of Apps [17, 62, 80] explored person-centred design approaches with people with intellectual and developmental disability. The MyPortfolio Apps, designed each to support specific goals of autonomy for their users, represent a useful example of how design needs operate in close dialogue with the network of relations that the person with disability participate into, and how this network (the person together with carers, family, friends) is the real recipient of any intervention.

3 CASE STUDIES 3.1 Case 1: Make and Connect - Enabling

People to Connect through their Things The project Make and Connect moved from theories of appropri- ation and habituation [15, 66] to recognise and value the creative effort that people invest into creating their own spaces, routines, and practices [68] and noting that novel technologies often risk to disrupt the miriad little arrangements [29] that makes everyday life work. By opposite, technologies inspired to extend and celebrate those integrations, and designed drawing on the intended users’ skills and knowledge [3, 4], have a chance to be more promptly ap- propriated. This is especially true of designs targeted to older adults and intimate settings such as the family, as disrupting routines and little arrangements in such contexts means intruding into other peoples’ lives and devaluing their skills [29]. The project envisioned a toolkit that people may use to prototype their own augmented everyday objects and embed into them social applications and com- munication devices. To make sense of the design space the project focused initially on designing very specific devices [19, 22, 67] that insisted on particular aspects of augmenting family life, routines, meals, inter-generational communication, and family play time. Of these, the Messaging Kettle (Fig. 1) is particularly valuable to shed light on how principles of engagement and reciprocity can invest of new meaning the quest for independence that inspires many designs.

The Messaging Kettle [18, 65] seeks to augment the daily routine of boiling water in the kettle to make tea to foster togetherness between older people and their loved ones. The project sought to connect geographically distant family members by augmenting their ordinary kettles with sensing and messaging capabilities. The Messaging Kettle is an IoT device (the Kettle Mate) intended to sit near the user’s kettle, and a communication base with a screen and stylus (the Smart Teabox) that runs the application and handles the networking and communication. The system is intended to support communication and continuing engagement for families living apart, for example an older person living independently in

Figure 1: The Messaging Kettle: The Kettle Mate (left) sense the state of use of the kettle and can record voice messages. It also glows when the remote kettle is in use. The Smart Teabox handles the networking and allows to sketch hand- written notes

her own home and her adult child living in a different Country. Each party is given a Messaging Kettle set, consisting of a Kettle Mate and a Smart Teabox to keep in their kitchen. The Kettle Mate embeds a temperature sensor that, when pointing at the real kettle, can sense if it is in use by measuring the emission of steam at the spout. It also contains a microphone, speaker, and RGB LED display. When the kettle is boiling in one home, the LED display will make the Kettle Mate glow of a warm orange/red light in the other person’s kitchen, so that each party is alerted when the other is having a cup of tea.

The users can also explicitly share a voice message by recording and sending it to the other party at the press of a button, and speak- ing into the Kettle Mate, or they can send a short note sketching on the screen of the Smart Teabox using the stylus. The Messaging Kettle was devised in part as a critical response to the very large number of monitoring systems for older people that treat them as passive subjects, collect data and send alerts to service providers if help is needed. Such systems, “useful in the event of an emergency”, offer the guise of independence at all other times. By contrast, a pair of interconnected kettles simply make an everyday comfort routine visible to the other party and engage them in simple mes- saging such as “I really need a cup of tea”. The idea was to foster a gentle form of reciprocal social monitoring through a pleasant act of social engagement, but granting the users the freedom to opt out by turning the kettle away from the sensor.

The Messaging Kettle project showed how the lives of indepen- dent older people successfully intertwined on a daily basis with their loved ones through an augmented object and Social Inter- net of Things devices used in daily routines. It was trialled with older mothers and their adult daughters and their family that grad- ually and fondly became aware of each other’s presence expressed through a glow of the Kettle Mate. People also got used to short

OZCHI’19, December 2–5, 2019, Fremantle, WA, Australia Soro, A., Brereton, M., Sitbon, L., Ambe, A.H., Taylor, J.L. and Wilson, C.

message exchanges in the Smart Teabox of the mundane, the ex- citing and the little things of their everyday. The adult daughters are happy to be in-the-know about the whereabouts of their mums, and vice-versa. Both are glad to be included in the daily routines that nurtured their relationship through and around the messag- ing kettle. Older adults found the messaging kettle a good fit for communication that in a way they have become accustomed to being constantly connected to their daughter, and vice-versa. This reliance became apparent during prototype breakdowns where the older mothers wanted the devices to be fixed or replaced right away as going back to telephony and email was not enough for them.

One user noted that the Messaging Kettle is ‘‘Less obtrusive in a wayâĂę you’re not sort of mollycoddling them or disturbing to find out if they are okay.” Another one remarked: “It’s like having somebody else in the kitchen... because, when you have somebody in the house with you. You’re not talking to them all the time. Every now and again, you’ll say something. So it’s more like a casual conversation. Except that mum’s not actually there, she is at the other end of the Tea Box.” Some participants eventually started embed the Messaging Kettle in daily routines: “Before going to bed, I press this (new message button). So in the morning when I wake up, it’s easy to see whether there’s a new message. There usually is.” Almost all participants noted that the handwriting makes the messages feel more personal: “It made me closer to my family. It’s different from Facebook and Skype. The handwriting of my grandchildren; you feel close and I feel very happy! The feeling that the grandchildren is home makes me feel happy. They are safe and secure.”

A few key lessons emerged from the project that can shed light on how independence can often result in nuanced and intricate personal interpretations. Firstly, users appreciated the reciprocity of the design. Different from many monitoring services, the Mes- saging Kettle does not provide a unidirectional peephole into the older person’s life. Instead it offers a symmetric and bidirectional communication channel for engagement: the older person’s routine of making tea becomes present and visible at the adult child’s home and vice-versa. Each party gets to see that at the other end of the line life is going on as usual, and each can decide to check in with a short message or scribble if they want, or can decide to opt for some privacy and turn the sensor around, keeping todays’ tea for themselves. Secondly, the users liked the choice of channels, and particularly the possibility to maintain a level of asymmetry in the engagement and communication.

We were told that sometimes one person loves to receive news, but not so much to send them, or can fear to be intrusive, but is happy when a message pops up. Different people also may prefer different media when sending or receiving, for example it is nice to receive a colourful and elaborated drawing on one’s Teabox composed by the grandchildren (a feature that none of the main Social Networking Services (SNS) provides, anyway) but an older person may decide to reply with a voice message instead. Some participants even reported of turning the kettle on just to make the other person’s Kettle Mate glow, as a way of saying ‘thinking of you’.

Finally, while many participants easily appropriated the Mes- saging Kettle into their routines, which was a key element that ensured continuing use, any change in those routines was hard to accommodate without disrupting the use of the system, a thing

several users regretted. One older participant went overseas on a holiday for several months, and she found it very difficult to remain in touch with her adult daughter, as it was hard for her to get the Messaging Kettle working on a foreign Internet service provider. Similarly, one older participant that lives in a different country from her adult daughter stopped using the Messaging Kettle when she went for some weeks to visit a relative, and when she returned home found it very hard to get the Messaging Kettle working again, for no obvious reason. We later discovered that the data allowance had expired when she was away, but diagnosing the problem over the phone proved very difficult. Ironically, a technology designed to foster independence was getting in the way (or stopped working) just when its users were enjoying some of that independent life.

3.2 Case 2: the MyPorfolio Suite of Apps - Person-Centred Approaches with People with Intellectual and Developmental Disability

The suite of apps we are presenting as a second case study started with an aim to support people to independently express their choices and interests, as well as to independently gain informa- tion to support such choices and interests [17, 62, 80]. Each app in the suite has been separately designed and developed with iterative prototyping and co-design sessions with people with intellectual and developmental disability. The starting point has often been to create an initial prototype, based on the recommendations of proxies, through understanding existing motivators, and drawing upon research and accessibility design guidelines. The prototypes were then observed in use, or used to support ideation in co-design sessions with people with intellectual and developmental disability and iterated upon. This “design after design” approach [17, 27] was employed as people with an intellectual disability are supported to show what they like and dislike, will and will not use, through their concrete actions with concrete prototypes more expressively than through abstract conversation.

Participants across all designs have either verbally expressed or directly used the apps with a much broader social network than we had anticipated, demonstrating benefits as much in independent expressions as well as their drive to reach interdependence. Put Yourself in the Picture(PYIP) [80] is an App that investigated how to support people with disability to visually and playfully envision and express their life objectives, using a mobile application. The PYIP app was developed to support a person-centred practice approach, by allowing individuals who often went unheard in their planning meetings to convey their plans and interests through the app and, importantly, without relying on verbal or complex cognitive ability. The application comprises a goal setting step, where users can chose an image, either stored in the camera, or from the Flickr©service. Access to images from Flickr is either through typing in a query, or visually browsing from a set of icons. Once an image is selected, the users take a picture of themselves (a “selfie”), and the app superimposes them onto the chosen image. They can then save the resulting image, or send it to a designated contact (which we had set to be the support worker).

Participants were able to use the application to express their goals and many enjoyed the visual approach to freely selecting

Beyond Independence: Enabling Richer Participation through Relational Technologies OZCHI’19, December 2–5, 2019, Fremantle, WA, Australia

Figure 2: Children who attend an autism-specific primary school using the MeCalendar app to engage in social play. The teacher has added the caption: "Social language video modelling. ’Can I play with you?’

images that suited their wishes. Some participants requested sup- port to type queries of specific images they were looking for (such as an upcoming event). Rather than only using it to show their carer that they would like to learn gardening, or go for a train ride, they went one step further. When using Put Yourself in the Picture, participants wished to share motivational pictures with their friends more than using the app independently or solely with a disability service provider. They used the app as a way to share with the observers or peers what their interests where. They also independently discerned how to use the App to take group selfies and wanted to send the photos to each other. PYIP began as an individual tool and then became a way to celebrate little successes and playful imaginings with others.

In autism-specific primary school settings, we encounter similar patterns, albeit on a more granular level.

MeCalendar (Fig. 2) is an audio-visual dictionary app which was originally developed to enable communication of children’s interests between home and school settings[79]. Although designed as an app for individual use, the social potential became abundantly clear during initial trials. Teachers appropriated the apps as a ‘show and share’ tool, projecting each child’s daily calendar entry onto the interactive whiteboard and asking them to tell the rest of the class about the image or video they had recorded. Although most of the children in this context are minimally-verbal and often found social interaction challenging, we observed the use of the app in this way to be socially enabling. Children were fascinated by each other’s apps. Freddy (age 7, minimally-verbal) would press play on his classmate Ryan’s app every time it showed his cat, watching his videos repeatedly. This led to Freddy saying the cat’s name ‘River’, to Ryan every time he entered the classroom.

MyWord is an audio-visual dictionary app [78]. It was designed to support users in accessing and practising words of interest, so that they could, for example, use them to search for them inde- pendently in image databases. This effectively helps users build

a personal dictionary of words and pictures of things that are of interest to them personally. The app was trialled in a school context, and children were given freedom to independently roam any and everywhere in the school during sessions with their MyWord app. We observed that the children began by making entries about ‘boots’ or ‘swings’, but that this eventually gave way to socially-directed entries such as ‘my friend Toby’ and ‘Toby’s train’ etc.

Two other projects in progress, Plan My Journey and MyBud- get Buddy, investigate respectively how mobile applications can support people with intellectual disability to navigate public trans- port in a large city and how a web application can support people with intellectual disability to choose how to spend money allo- cated to them through disability funding schemes in ways that comply with the categories of funding that must be adhered to. In explorations around transport, participants were mentioning the opportunity to give others directions on how to reach a destination, and this feature was deemed more important than the ability to travel alone [28]. They felt it would be appropriate and comforting that the applications would send their position to a family member at all times. During design iterations of MyBudget Buddy, partic- ipants projected themselves using the tool together with family members. They wanted to be able to understand what was happen- ing in the selection using icons or large text, and visualise their budget without the complexities behind it. However, they felt that their family members would support them in making the right decisions, and guide them with amounts of services to select.

These observations suggest that accessible design guidelines may need to be reconceptualised in order to meet the preferences of people with intellectual disability in their approach to decisions. In particular, standard accessibility guidelines are centred on the in- dividual user and do not typically integrate requirements for shared designs. This reflects the fact that independence, when articulated in detail, is a nuanced concept that reaches beyond the individual, to include the network of resources that the person can mobilise. During one of our interviews, a participant with intellectual dis- ability repeatedly, spontaneously and assertively said that she was “independent”. This participant lives in her own home, and is ac- companied by individual support workers during the day. There is a clear need to expand these ideas in the design of interactive systems to support people with disability.

4 RELATIONAL TECHNOLOGIES Reflecting on the literature and the case studies, it is clear that inde- pendence is a situated and contingent concept, that needs careful unpacking. We need to reconsider independence as a relative con- cept, and remain alert to its ideological nature: independence from whom, in what manner, in what measure? In the proposed exam- ples, participants asserted their agency, resourcefulness, and desire for engagement, and expressed ways to advance these, through their network of social relations, as well as through technology. We attempt now to make a case for technologies that look past the ideology and fully recognise that people’s well-being is predicated on fulfilling participation in social relations (be it in one’s family, in one’s community) as well as in concert with carers, and other ser- vices. In doing so, we offer here a series of questions as discussion prompts and as springboard for future research.

OZCHI’19, December 2–5, 2019, Fremantle, WA, Australia Soro, A., Brereton, M., Sitbon, L., Ambe, A.H., Taylor, J.L. and Wilson, C.

We learnt from the case studies that people living with a disabil- ity, as well as older adults, do talk about wanting to gain, re-gain, or maintain independence. This is however articulated in ways that try to level the power imbalance of dependency, rather than to sever the bonds that one person has to their carers. On the one hand, there is a willingness to be at the centre of decisions impacting one’s life, on the other there is a willingness to navigate the tensions between the independence people configure for themselves, and the independence they imagine for others.

Carers and cared for have a reciprocal relationship that binds the ones to the others. Carers, after all, are not only those who care for a vulnerable person, but also, more importantly are those who care about that person [52], a sentiment often reciprocal engagement. Within families and friends there is a duty of love and care, but even professional carers don’t certainly approach their ‘clients’ as a chore to deal with as efficiently and painlessly as possible. It is a narrow vision of independence the one that merely seeks to simplify our life, taking away from us the responsibility and the joy of caring for each other.

In the MyPortfolio projects, participants’ family members and friends were co-recipients of the technology. For example, in the budgeting application, the vision was that the participant would be able to go through the budget with a family member, and be able to see and understand the process and comment on decisions as well as decide. Similarly, users of the Messaging Kettle were keen to try the system with other friends, or extend it to more family members, for example sometimes they decorated the case of the Smart Teabox to their taste with their grandchildren. At the same time participants were conscious of the need to negotiate the private nature of the contents shown, as in the case of one participant who reported positioning the devices so that it was not in view from outside the home.

Here we propose that designs, especially the ones intended for vulnerable users, may need to abandon some of the rhetoric of in- dependence to more explicitly spell out the values that hide behind this complicated term, and at the same time embrace the goal of rather acknowledging, developing, and supporting richer relations and interdependence. We call these designs Relational Technologies.

Having considered the two case studies, one may legitimately ask why a new perspective is needed, and whether relational technolo- gies should not be regarded as bespoke Social Media channels. After all, the features offered by the Messaging Kettle and the MyPortfolio suite could be replaced with services and functionalities available ’off the shelf’ on many mobile devices and social networking ser- vices (SNS). Yet, the case studies suggest that there are aspects of everyday, intimate life, that SNS, no matter how specialised, do not (or cannot) support.

Information and communication technologies (ICTs) in general, and SNS in particular, have gone a long way towards connecting and empowering people, but there is still work to do for these to be- come real enablers of digital interdependence. Commenting in 2006 on 10 (or so) years of Ubicomp research, Yvonne Rogers [58] noted that technologies (and research) needed to look past Weiser’s vision of calm computing [76] to rather try to engage and excite people to allow them to do “what they want, need or never even consid- ered before” [58]. Ten (or so) more years after Rogers’ comments, we may note that social media and Web 2.0 platforms, combined

with the ubiquity of mobile computing, have made further steps towards connecting everyone everywhere, potentially supporting every person’s voice as never before.

But we also observe that these technologies, for complex rea- sons that include their business models, the depth of their reach, the unprecedented volume of contents people are exchanging, are generating new divides, re-inscribing old inequalities, amplifying old risks, and in fact creating new dependencies (social, technical, political, economic, as well as physiological addiction). Some re- searchers are now beginning to advocate for moderate internet use, with the goal to limit the environmental impact of ICTs on the one hand1, and to improve users’ digital well being, privacy, productivity, and relationships on the other [77].

As Preist and colleagues noted [53] “User-centered design and customer-driven business, together with societal values of individu- ality, choice and convenience lead to designers working to provide ever faster, richer and more pervasive digital services.” These ser- vices are embraced by power users first, then mainstream users, generating a feedback loop of constant (unsustainable) infrastruc- ture growth and demand [53].

In our view, this has implications beyond sustainable design, however. Research is showing that even among mainstream users, many people are dissatisfied with SNS, and the values commonly associated with ICTs and SNS are often lacking in practice. Many people remain excluded, refuse to engage with SNS [61], or con- template deleting or suspending their accounts out of concern for privacy, pressure from peers, family or work, disenchantment and lack of interest, and a feeling that the relations enabled by SNS are in-authentic and superficial [9]. Communication over SNS, while empowering and liberating for many, is also often associated with anxieties [59] and feelings of pressure to conform to modes of use that become easily overwhelming [77].

We argue that one reason for the inadequacy of SNS to support effective and fulfilling relations for many users is to be found in the focus on individual ambitions and needs, and a corresponding lack of attention to the fact that people can only thrive in synergy and community with other people. We offer a call to design Relational Technologies, technologies that recognise, support, and even cele- brate the network of inter-dependencies that allow people to seek their goals, however mundane or ambitious they may be. Below we discuss three main characteristics that help us recognise or design relational technologies.

4.1 Relational technologies are socially enabling

We have noted many technologies aimed at older adults or at people with disabilities, conceived under the umbrella of ambient intelli- gence [25] and ambient assisted living [38] seek to automate tasks, rather than empower users [7]. In promoting social engagement as an enabler of independence we stress on the need for relational technologies to empower all the people that participate in interac- tion.

Even if they were not designed to do so, users adopted the apps from the MyPortfolio project to share and socialise around their in- terests. Freddy, a minimally-verbal child started to name his friend’s 1See [77] for a discussion on the environmental footprint of ICT use

Beyond Independence: Enabling Richer Participation through Relational Technologies OZCHI’19, December 2–5, 2019, Fremantle, WA, Australia

cat; children wanted to create entries about each other’s interests, moving beyond the initial framing of individual learning; users of the ‘Put Yourself in the Picture’ app explored ways to take group selfies. Users of the Messaging Kettle noted that the device made them feel more connected, less lonely, and that it came to fit partic- ular routines. The same routines that for many spell out the rhythm of family life. One participant would set the Tea Box on a blank page before going to bed to make it easier to notice a new message in the morning. Another was glad to have a less invasive mean to check on the older relative. One more noted fondly that the handwriting of her grandchildren was a particularly welcome feature.

One element these examples have in common is that the tech- nology managed to weave into the complicated an often conflicting web of needs and preferences to really become an enabler of social engagement for each party. SNS apps can connect people, but the typed messages may not feel as affectionate and sincere to some users (see e.g. [23]), and when a new message is announced with the ringing impatience of workplace communication, it may not suit the taste of older and younger users in the same manner. Often a result is that some users remain ‘marginalised’ [61] and don’t adopt a technology that fails to address their needs and capacities [66], and therefore remain even more isolated in a role of outsiders from a technology that was supposed to make them feel connected.

4.2 Relational technologies afford reciprocity and symmetry of empowerment

There are cases in which independence is achieved as a personal goal, and technology can bring this goal within reach of the person. There are other cases in which the person’s goals cannot be easily disentangled from the concurring and sometimes competing goals of carers, family, and friends. And finally there are situations in which there is a symmetry of aims, and focus on the ’independence’ of the single user would be entirely misleading. The case studies exposed several such examples.

As we noted, the Messaging Kettle project was conceived as an alternative to the proliferation of monitoring technologies for older adults. We wanted to explore in what ways social engagement, and maintaining connections, could become a valid but less invasive alternative to packing the homes of older people with sensors. It became clear from the trials though, that the key difference between the messaging kettle and other technologies was not to be found in the nature of the sensors used, but in the symmetry of interaction. Social engagement is not an alternative to monitoring. If anything it is the ultimate form of monitoring, one in which people keep an eye on each other and care about one anothers’ well-being. The reciprocity of this relationship is however what makes the difference. We learnt from the participants to the study that both sides appreciated the feeling of control over the technology and over the level of engagement.

Similarly, users of the Plan My Journey App valued the possibil- ity of using the App to help others in their planning, not just as an enabler of their own personal mobility. As humans, we have a nat- ural inclination to share with people we love, and it is a significant motivator for people to be able to reciprocate the care and love we receive. Sometimes this is as important as gaining independence. In fact, even when independent living or mobility are unattainable,

people value those technologies that give them agency to express their appreciation for the people they love and to actively partici- pate in activities they like [54]. So, ironically a focus on autonomy and independence may risk to isolate people into their homes or within sessions of individual use of an application, whereas focus on reciprocity and interdependence brings to the fore the sense of shared accomplishment that people so often declare to value better than anything else.

4.3 Relational technologies allow people to participate in their own terms

Finally, the case studies show that, from the people’s perspective, the aim for independence is often better and more accurately under- stood as participation in a network of relations in one’s own terms. Users of the Messaging Kettle advanced the possibility of using the device with friends, therefore seeking reciprocal engagement with relevant others, besides their ‘caregivers’. One participant to the My Budget Buddy trial expressed a vision of independence that integrates the role of their carers, and is proud to meet the criteria to be considered independent. She apparently does not see people in her life as dependent support, but as part of her independence.

This does not mean that everyone can (or should, or should want to) participate in equal measure. Abilities and interests differ from person to person, and so do the opportunities for interacting [71]. Older users of the Messaging Kettle noted that one reason why it is so difficult to communicate with their adult children is that they are always so busy, and they fear to intrude (see also [63]). The Messaging Kettle was then seen as a way to share simple messages without putting too much pressure on the recipients for sending an immediate reply. Other users appreciated that the system caters for different preferences in the type of medium, so that people can enjoy sharing a message even if they momentarily can’t find their glasses, or can easily mix voice to sketches, depending on their skills, preferences, or simply on the whim of the moment.

For people living with a disability, emphasis on participation on one’s own terms means offering every person opportunities to share in the social use of technologies that otherwise may become reason for further marginalisation. It is significant that children trialling the My Portfolio Apps often started to explore them as individual activities, and then spontaneously started to explore so- cial uses, such as taking each other’s pictures, making notes about their friends’ pets and toys, or reaching out to friends and teachers to show their accomplishments. This is interesting because much literature suggests that individuals on the autism spectrum (as the children in the case study) can experience challenges in social inter- action [6], and the Apps were presented for individual, independent use. In a sense, the apps were proposed as tools to foster indepen- dent learning but instead were found to foster social interaction and social engagement, and the users determined creative ways to bend them to their own interests, and to do so at a pace and in a way they felt comfortable with.

5 CONCLUSION In this paper we have discussed and unpacked the concept of inde- pendence, and analysed it in the light of its historical and cultural

OZCHI’19, December 2–5, 2019, Fremantle, WA, Australia Soro, A., Brereton, M., Sitbon, L., Ambe, A.H., Taylor, J.L. and Wilson, C.

roots, as well as relevant HCI literature. While the quest for inde- pendence is often a motivation for research, and a need or ambition for users, we have noted that this term is ideologically charged, and often more accurately understood in terms of freedom of choice, agency, participation, dignity, and more.

Making the distinction is key, as much research has noted that design interventions aimed to implementing simplistic forms of individual independence often fall short of their goals, and rather risk to further dis-empower, marginalise, and disengage the in- tended users. We rather advocated for a shift in research focus to interdependence, and in design to technologies that can be appro- priated into the network of relations in ways that make the relations stronger, more enjoyable, and far reaching.

We propose the concept of Relational Technologies to describe those designs which enable richer relations between people, in ways that empower both the individuals and the community, family, or group in which they participate. Relational technologies seek not to simplify life or ease the burden of a given task, but rather to sup- port a more meaningful life, and open up choices over those tasks. Their characteristics are to be socially enabling in that they foster sharing one’s accomplishments with peers, family, and the broader community; to afford reciprocity and to empower all participants rather than configuring some users as passive subjects to support; and finally to allow participation in one person’s own terms, so that people can decide the level of engagement that is preferred, and can engage with the system according to one’s own skills, abilities, values, and rhythms.

ACKNOWLEDGMENTS This work was partially supported by the Australian Research Coun- cil and the Endeavour Foundation through grants DP150104001 “Make and Connect: Enabling People to Connect through their Things” and LP160100800 “New Information Access Technologies for People with Intellectual Disability”.

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