Discourses of Care

Media Practices and Cultures

Amy Holdsworth, Karen Lury, Hannah Tweed, Amy Holdsworth, Karen Lury, Hannah Tweed

• Publisher: Bloomsbury Academic
• Year: 2020
• ISBN:
  9781501342844
• Edition: 1
• Topic: Social Sciences
• Subtopic: Media Studies
• Index: Social Sciences

Bringing together scholars from film and television studies, media and cultural studies, literary studies, medical humanities, and disability studies, Discourses of Care collectively examines how the analysis of media texts and practices can contribute to scholarship on and understandings of health and social care, and how existing research focusing on the ethics of care can inform our understanding of media. Featuring a critical introductory essay and 13 specially commissioned original chapters, this is the first edited collection to address the relationship between media and the concept and practice of care and caregiving. Contributors consider the representation of care and caregiving through a range of forms and practices – the television documentary, photography, film, non-theatrical cinema, tabloid media, autobiography, and public service broadcasting - and engage with the labour, as well as the practical and ethical dimensions of media production. Together, they offer an original and wide ranging exploration of the various ways in which media forms represent, articulate and operate within caring relationships and practices of care; whether this is between individuals, communities as well as audiences and institutions.

Section Two

Technology, care and facilitation

4

Are digital platforms and touchscreen devices effective caretakers?

The touch-and-go of users with visual impairments

Anna Piccoli

Within the field of media studies, extensive literature exists that investigates the influence of digital technologies on people’s lives and the interaction between human and non-human actors. New media and digital culture research tend to focus on the political and economic consequences of this interaction. In this chapter, I use a disability studies lens, and specifically the social model of disability, to suggest that digital devices and software that are not designed to be assistive technologies (e.g. smartphones, social networks, applications) can play a significant role in reducing functional impairment for people with low or no residual vision. I also argue that, despite their potential to reduce impairment for visually impaired people, everyday digital devices do not fit in the definitions of caregiver or caretaker that currently exist in the literature. Rather, they act as ‘relievers’. Thus, they complicate the concept of ‘care’ for disabled people in the twenty-first century.

Generally, assistive technologies are designed to address the specific needs of a given category of people with a specific impairment. In this sense, they differ from the digital devices and software I refer to throughout this chapter, which are created for a larger market and do not aim to eliminate or reduce environmental barriers for disabled people. However, when digital devices can, in part, provide effective assistance for people with – for example – visual impairments, should these ‘everyday’ devices be regarded as a mode of care? In light of the experiences of eighteen interviewees who self-describe themselves as blind or visually impaired, I reflect on the notions of caregiving/caretaking, look at how digital devices affect visual impairment, and subsequently challenge the definition of the ‘carer’, introducing instead the notion of the ‘reliever’. In doing so, I draw upon Amelia DeFalco’s differentiation between ‘caregiving’ and ‘caretaking’ (2012: 382). In DeFalco’s presentation of caretaking, ‘[t]he power implications are clear: to “take” care is to take “charge”, to adopt a position of power over the person or object cared for’ (2012: 382). Instead, she proposes,

The power implications of ‘caregiver’ are dispersed and subtle, not clearly hierarchical as in caretaking, which involves one person put into a position of maintenance and responsibility. Caregiving does not, by definition, necessitate payment, training, assignment, or supervision. Its lexical development suggests the need for terminology denoting care work and connoting ethical commitment, since the caregiver responds to another’s needs rather than merely assuming responsibility for upkeep and oversight, and offers attention and concern, implying human decency, selflessness, responsibility, even affection. (2012: 383)

Within this context of caregiving, the interplay between digital devices and impairment is increasingly important. According to digital studies scholar D. Berry,

[W]ithin the realm of digital computational devices we increasingly find symbolically sophisticated actors that are non-human. These devices are delegated particular behaviors and capabilities and become self-actualizing in the sense of realizing their potential by performing or prescribing complex algorithm-based action onto the world and onto us by acting to intervene in our everyday lives. (2011: 125)

Several scholars, especially from new media studies, have engaged with this topic, showing the powerful impact that digital technologies – even invisible ones – have on the actions and choices of people in areas of the world where such devices are commonly used (see Beer 2009; Pariser 2011; Berry 2011; Langlois 2013). These studies are extremely relevant for those who would like to better understand digitized societies. However, while they offer a general overview regarding the ‘ordinary’ user, they do not necessarily investigate what happens in specific fields, such as care. Yet, the more widespread non-human actors become, the more urgent it is to interrogate their effects within a multiplicity of sectors, with diverse users.¹

This chapter is based on data collected through a series of eighteen semi-structured interviews with Italian and Dutch users of digital devices who have low or no residual vision. Drawing from their experiences, I propose that contemporary disability studies and new media and digital culture studies need to consider how digital devices and software provide care by relieving functional impairment. Discussing early smartphones, McGookin et al. (2008) argue that touchscreen devices are largely inaccessible to blind people – a position which has seldom been challenged, despite technological advances. In 2019, smartphones and other digital devices are widely used by people with visual impairments, with the development of screen-reading software such as JAWS (Job Access With Speech), NVDA (NonVisual Desktop Access) or VoiceOver. The combination of audio inputs via screen reading and continual practice on a spatially limited surface enables many people with visual impairments to integrate touchscreen devices and other, mainly visual, platforms, applications and software in their daily life.

Besides acknowledging the use of digital devices by and for people with visual impairments, I also consider the consequences thereof. New media technology, phone applications and digital platforms are increasingly allowing users with visual impairments to access real-time information about their surroundings, friends, events and objects. The immediacy of information and contact is crucial in reducing mobility problems. More importantly, when help is needed, one can ask and receive immediate feedback from a digital device. The interviewees who took part in this study tended to perceive ‘everyday’ digital devices, platforms and software as offering greater independence from external caretakers. At the same time, though, there is a potential risk of creating technological dependence; however, I follow Berry in considering it more productive to focus on the way technology transforms our lived experience.

In the last part of this chapter, I take into account the transformations that digital devices bring into the being-in-the-world of visually impaired users and address a central question: Can digital devices be considered a mode of care? To answer, I go back to my initial considerations on the notion of care and analyse how these play out against the backdrop of the growing importance of non-human agents.

Care: Instrumental and affective support towards independence

Under DeFalco’s use of the term, being aware of the purpose of caregiving/caretaking and the forms its actualization can take is the first step to understanding whether someone – or something – acts as a caregiver. As some of the theories of care covered in this collection indicate, care is provided to increase the quality of life of people with physical or psychological impairments, either out of empathy or out of moral effort (Noddings 2010). Even in its most basic definition, care encompasses two main areas: medical assistance and relational bonds. Under this understanding, care is ‘the provision of what is necessary for the health, welfare, maintenance and protection of someone or something’ (Oxford Dictionaries, n.d.). As a verb, it equals to ‘feel concern or interest […] affection or liking’ (Oxford Dictionaries, n.d.). In this chapter, I refer to Reinhardt’s theorization of care as both ‘instrumental support’ and ‘affective support’ (2001: 78–9). Instrumental support includes providing material aid and physical assistance. Affective support includes intimate interaction, advice and positive feedback.

Clearly, instrumental support is essential to people’s health and well-being, but it has been demonstrated that the absence or presence of affective support largely influences the actual effects of received care. As one of the participants in Nyman, Innes and Heward’s study explained, ‘To me care is, is continuous. It isn’t [...] one person looking in and saying are you alright and ticking a box’ (2016: 5). Regarding visual impairment, Reinhardt (2001) proved that visually impaired older people benefitted from affective support from friends and family members and showed greater life satisfaction than those who did not have affective support systems. The former group had fewer depressive symptoms and greater life satisfaction, and adapted better to vision loss than those who did not receive affective support from friends and family. Similarly, Ramani, Police and Jacob point out that in the case of children with visual impairments, ‘the use of low vision devices can increase the reading speed, and improve reading accuracy and fluency’ (2014: 113). However, Ramani et al. also found that ‘the role of special educational approach, the motivation of the parents, teachers and the children involved, study environment and the focused care of the special educators and the parents cannot be underestimated’ (2014: 113). The importance of affective support is one of the driving factors in the development of patient-centred care (Epstein and Street 2011). In Stewart’s words,

Patients want patient-centred care which (a) explores the patients’ main reason for the visit, concerns and need for information; (b) seeks an integrated understanding of the patients’ world – that is, their whole person, emotional needs and life issues; (c) finds common ground on what the problem is and mutually agrees on management; (d) enhances prevention and health promotion; and (e) enhances the continuing relationship between the patient and the doctor. (2001: 445)

As these quotes suggest, understanding the difference between instrumental and affective support is more than a theoretical exercise – it is of tangible importance to people who receive and give care. On a theoretical level, it resonates with the distinction between a caretaker – mainly in charge of instrumental support – and a caregiver – someone who tends to be also affectively involved.

What is the purpose of providing care? In a society that ‘mythologizes concepts such as “independence” and “autonomy”’ (Fineman 2002: 215), care is seen as paramount to providing greater independence and decision-making capacity to disabled people (cf. Feder Kittay 2011). Enabling more independence is regarded as ‘conducive to promoting confidence and maintaining self-esteem’ (Watkinson and Scott 2004: 40). While dependence often carries a negative connotation, and is regarded as inversely proportional to capacity, independence is equated with dignity. This is a dangerous paradigm, which should be replaced by ideas of interdependence. Our dignity should not be associated with independent capacity but rather considered relational: our existence is inherently interdependent because our moral personhood is ‘inextricably linked with other persons who care for us and for who we care’ (Purcell 2013: 54). As Feder Kittay argues,

Acknowledging the inevitable dependency of certain forms of disability, setting them in the context of inevitable dependencies of all sorts, is anoth...