The question of technology and disability has provoked an array of academic and clinical work which, although disparate, shares the objective of enhancing social or bodily function. Although diverse models of disability attempt to locate the role technology plays in disabled peopleâs lives, historically concern has been directed towards enhancing the human condition or to be more precise to address the function of technology in relation to facilitating what Nussbaum calls capabilities (Nussbaum 2011). Of course, extreme technocentric constructions can both misread the benefits of technology and also offer misplaced hope as to the potential of technology. This is evident in recent discussions of âcureâ in spinal injury via stem cell therapy, exoskeletal shells and thought-activated prostheses (Breen 2015; Marchal-Crespo and Reinkensmeyer 2009). These approaches, in say clinical rehabilitation or engineering, focus on âhigh-techâ interventions, often for those with the most significant impairments. At the opposite extreme are social-determinist views, which assert that technology can play only a small part in helping to produce an enabling society (Oliver 1990; Zola 1989). Both views distract attention from the myriad ways in which technology (low/high, cheap/expensive, tangible/virtual) can aid choices in daily living and independence for disabled people. It is clear that technological âgold standardsâ, both of technologies themselves and their wider techno-social support systems, may simply miscomprehend the gains technology affords for many disabled people. However, we do need to be cautious about the claims made of technology, of its ability to improve the lives of disabled people. Industry, professional and early adopter enthusiasm may detract from the limits of a given technology (Hannukainen and HölttĂ€-Otto 2006). Why else is so much technology not used or under-used?
Ergonomically designed aids to daily living such as well-designed cutlery, door furniture and screw tops may have as much impact on independence and control for some (Renda and Kuys 2013) as sophisticated global positioning systems (GPS) or infra-red tracking systems do in aiding others (Helal et al. 2001). Much social science writing on disability and technology is theoretically intense but is often lacking in empirical support: it is unusual for much of the research to be upfront about the research methods used in the studies they are evaluating. Meanwhile, clinical and rehabilitation studies may provide rich detail of the methods adopted but are often unaware of or fail to mention their epistemological standpoint and whether their research question can be viewed in a different way. Many theories and writings assume that the only requisite focus is on studies of the same type; so that sociological studies tend to cite other such studies, while clinical studies may draw down only those studies in their own image, even if they come to very different conclusions. When I began the book Enabling Technology back in the mid-1990s, the key reference points were the UK; looking back, insufficient attention was given to the diversity of models and narratives available in the literature (Roulstone 1998). Many studies are context blind and do not aim to account for international or country-specific factors, such as the mix of market and state, demographic specificities and cultural responses to technology and disability. For example, attitudes to disability in Malta, a small-sized but largely Catholic country with close-knit socio-cultural systems, may be very different from say a large, universalistic and technologically advanced nation like Germany. In these very different contexts, how might attitudes to say exoskeletons, texting and telecare vary?
The only way then to understand and provide a complex model of disability and technology is to seek international evidence, to acknowledge diverse social and cultural contexts, to register disabled peopleâs perceptions and experience (Chaves et al. 2004) and to factor in age, generation, gender, impairment and locality wherever possible. The increasing marketisation of technology, aids and equipment also requires a greater understanding of the interplay between âneedâ, market-imperative and the just allocation of technologies to provide assistance (Stone 1984). Markets have the potential to foster false needs (Herbert 1964) of course, but also to be more responsive than say centralised state bureaucracies: much of the available literature points to insufficient access and supply in both market and state welfare contexts of say power chairs but for very different reasons. The recent retraction of welfare settlements across the northern hemisphere and the advent of a recommodified state (Morel et al. 2012) require renewed attention in terms of what these produce and how they match social need (Doyal and Gough 1991). Only by comprehending the above mix of variables can technology, enablement and the social gains and disbenefits of technology be fully understood.
One thing that is a leitmotif in this book is the paradoxical nature of technology: its simultaneous ability to open up but also to limit opportunities, access and inclusion. The fragmentary nature of the study of disability and technology to date has arguably not synthesised the fullest implications of this paradox. Somewhere between technological determinism (Ellul 1954a,b) and a full-blown theory of personal agency (LasĂ©n and Casado 2012) to shape technology is the critical realisation that technologies and disabled people intersect in often unpredictable ways. Planned activity-design, implementation, procurement and use may easily produce negative unintended consequences (Hughes et al. 2001), while the benefits of technology in opening up environments, access and inclusion may be the âresultâ of unplanned or even remote technological developments, for example with texting for d/Deaf people (Okuyama and Iwai 2011; Power and Power 2004). Serendipity and its obverse have been important factors in shaping the benefits and limits of technology for disabled people (OâDonoghue 2013) which clearly need unpacking further. We need to understand the direct benefits of technology for disabled people, for example those that come with many hand-held technologies, as well as the indirect benefits, as a âmeans to an endâ in helping them achieve social goals. Although engendering frustration in some writers, it is this unpredictability of technology, disability and society, and their intersection, that makes this a rich and nuanced field of study. Technologies do not emerge without human preconceptions of need and functional benefit. In this sense, technologies represent the wider constructions, zeitgeist and social imagination as much as they represent tangible artefacts (Mackenzie 1999; Roulstone 1998; Williams and Edge 1992; Winner 1986). Technologies have the power to enable, yet also disable, to foster greater control and surveillance, and conceivably to embody the very symbol of alienation for disabled people. Technology, although aimed at aiding disabled people, has often been designed and procured by non-disabled people.
The question of the scope and role of technologies, their enabling potential for disabled peopleâs access and inclusion, is now well recognised (Harris 2010a,b; Woods and Watson 2003). Writers and researchers also point to the limits or misuse of such technologies, that they can be disabling and close off options for disabled people. A good example of this tension between enabling and disabling surrounds new complex technological interventions that make possible more precise pre-birth diagnoses of disabled babies (Asch 1999; Saxton 2000) yet also present new moral and ethical dilemmas that did not previously exist. Further, even relatively straightforward technologies, ones often overlooked in technology studies, such as wheelchair design and access, afford new possibilities, but which at the same time also present new avenues for exclusion, especially if those technologies become over-engineered and too costly (Harris 2010a,b). While the design of wheelchairs, for example, becomes more user-centred, their availability, especially of power chairs, is increasingly problematic in the context of austerity, even in the historically better resourced northern hemisphere (Eggers et al. 2009; Staincliffe 2003). Some disabled people are refused access to wheelchairs due to medical conceptions which connect certain impairments with âwheelchair needâ and not others, while the âneedâ for technology is often conceived as either total or absent. This is especially true in biomedical systems that often fail to, or are not allowed to, understand the complex relationship between technology and disabled lives. A good example of this is that non-disabled thinking on cars, bikes and public transport technologies would not conceive these needs in a binary need/does not need manner. Location, distance, subjective conceptions of need and the complex interplay of say âneedâ for mobility options may be in tension with the âneedâ to take exercise. These nuances are often absent in need and eligibility conceptions that are regularly imposed on disabled people regarding technology systems. Disability is often viewed as a static and unchanging entity, but the evidence suggests that impairment is changeable for many (Boyd 2012; Vick 2013), while environmental challenges and options are massively diverse. This book makes it clear that both clinical studies and social science thinking often homogenises disability. Even post-structural accounts that are inherently authored to trouble categorical theorising may fail to interrogate disability diversity (Haraway 1991a).
The premise in this book is that a complex interplay between technology and disability exists, one which can best be understood by recourse to interdisciplinary and international evidence. Drawing on sociology, philosophy, ethics, rehabilitation engineering, medical, para-medical, computer science and technology studies (e.g. Science and Technology Studies or STS) (Hackett et al. 2008; Hoppe 2005; Sismondo 2011) I aim to comprehend disability and technology in a holistic way and explore the intersection of self, identity, corporeality and technology. It will be argued that some social science studies of disability pay too little attention to the nature of a technology and its proximate character, benefits and risks to end users. A corresponding dismissing of the benefits of a technology can be seen in the absence of the widest examination of evidence. A good example is the bandwagon of criticism of cochlear implants in the absence of any real attempt to look at what such implants might offer or indeed those deriving benefits from them. This is not to diminish the Deaf cultural backlash against implants, but to note that the population of users, the impairments, risks and benefits are often not engaged with. High theory is seen to posit cyborg or prosthetic identities, but the authors at no point define or engage with examples of either cyborg science or prosthetics as real entities as opposed to imagined futures. The corrective I put forward is to argue that both social science and clinical science has to offer greater coordinates, reflexivity and proximity to end users in its research. This distance partly explains why so much has been written about determinist forces at the expense of everyday live...