1. Introduction
In this paper, we want to show the role of new and emerging technologies in the daily life of disabled people. When we talk about disability, we mean any temporary or permanent condition, acute and/or chronic disease and/or deficit, as well as new cultural-socio-economic statuses which imply functional limitations experienced at any age. In this latter context we are not using disability as a synonym of some specific handicap or impairment of a class of human beings. We are referring to a wider concept where limitation can be experienced as disabling, and this can include a wider and heterogeneous group of conditions: sensorial, motor, cognitive, and psychic disabilities as well as socially disadvantaged conditions. All the conditions are characterized by a specific impairment or, in more complex cases, by a cluster of impairments.
The concept of disability has fundamentally transformed in time. The first international definition of disability was the 1980 International Classification of Impairments, Disabilities, and Handicaps (ICIDH). ICIDH differentiates between three dimensions of disabling conditions – impairment (any loss or abnormality of psychological, physiological or anatomical structure or function), disability (any restriction or lack of ability to perform an activity in the manner or within the range considered normal for a human being) and handicap (a disadvantage for a given individual, caused by an impairment or a disability, that limits or prevents the fulfillment of a role that is normal for the individual). In any case this classification continues to consider a disabled person as an intrinsic bearer of a deficit. Disabled individuals are persons that need to be helped so that they can adapt to the standards of a world created by and for non-disabled persons. ICIDH suggests a cause-and-effect relationship between each typology of injury that may lead to a functional or organic impairment. This, in turn, may lead to disability in terms of functional performance in the individual behavior. Finally, this may generate a disabling restriction of the ability to perform an activity in a manner or within the range considered normal for a human being.
More recently, the International Classification of Functioning, Disability and Health (ICF) in 2001 identified only two apparently opposing concepts as ‘disability’ and ‘health’ just starting from the relational ‘functioning’ of each human being (disabled and not-disabled) in his or her own surrounding environment. In its Introduction, “‘Functioning’ is an umbrella term encompassing all body functions, activities and participation; similarly, ‘disability’ serves as an umbrella term for impairments, activity limitations or participation restrictions” (ICF, p. 3). According to this definition, disability is indeed a transversal experience which can be experienced by all humans at some stage in their lives. The ICF represents a clear index of how the disability concept can change and evolve in the direction of a wider context of reference, including both medical and socio-cultural features. Although the category of ‘impairments’ is retained, in the ICF the dimension of disability is replaced by the terms ‘activity limitations’, and ‘participation restrictions’. In this way, the focus of a disabling condition shifts beyond the realms of a one-sided knowledge, such as in the cases of what we consider ‘nature’ and ‘medicine’. Disability is no more a state resulting on accident or incident, but rather an experienced limitation of activity. Taking inspiration from this conceptual novelty, the medical and cultural struggle against disability does not only mean recognizing disabled people with the fundamental right to sustain the biological existence, or the basic conditions of human agency. Supporting disabled people means providing concrete opportunities and social conditions to help them to do the best they can. Disability policies also mean guaranteeing ‘effective freedom’, i.e. effective access to production of means, access to the education needed to develop one’s talents, freedom of occupational choice, the right to make contracts and enter into cooperative agreements with others, the right to receive fair value for one’s labor, and recognition of one’s productive contributions’(Anderson 1999, p. 318).
As we will see throughout this paper, new technologies allow us to go beyond the dichotomy of medical and social models of disability. We can thus avoid the two classical extremes, that are considering disability entirely as a social phenomenon (Hacking 1999), and considering disability through the one-sided medical view that considers the body “as a pre-social, inert, physical object, as discrete, palpable and separate from the self” (Hughes - Paterson 1997, p. 329. On this see also Vehmas and Mäkelä 2009).
2. Beyond the contraposition of medical and social disability models
Theorists have usually been interested in disabilities regarding major issues such as medical aspects and social aspects. For instance, the main theoretical approach to our theme – disability studies – has for many years demanded that we change our views by considering disability as a heterogeneous phenomenon. Studies talk about a revolutionary passage from a ‘medical paradigm’ of disability, intending it as a disease or organic handicap, to a ‘social paradigm’, where disabilities are considered according to larger contextual factors (social, cultural, political). However, if we attempt to analyze these two models, we note that, in both cases, the substantial elements which define the condition of disability depend on supportive ‘external’ interventions.
It is well known that the medical model was the first model to investigate disability. According to the medical interpretation, disability is a direct product of individual and biological defects and illnesses. Thereby, disabilities are only treated with new therapies, rehabilitative practices and medical interventions (Silvers - Wasserman - Mahowald 1998). The boundaries of this approach regard the interpretation of disability as a medical phenomenon. The conditions of disability are specifically focused on the ‘abnormality’ of people while the surrounding environment is still intact. The social model of disability offers an alternative paradigm to understanding disability, because it identifies the causes of disability within social and political domains. According to this definition, disability cannot be reduced to an exclusively medical characterized impairment, but it is rather a condition that is dependent upon how society is politically and socially structured in relation to particular medical conditions. The lack of equal opportunities and explicit legal recognition as well as social discrimination, stigmatization and prejudices represent the turning point where the medical and physical conception of disability moves towards a socio-political representation.
Clearly, the social paradigm of disability offers great benefits and represents de facto a fundamental evolution of the concept. However, in the social paradigm of disability, the proposed solutions are connected to an external recognition of the disabling condition. This is because the social model is intended as a further stage, as an evolution of the medical model. More legal protections and differentiated rights, ethical committees, and positive policies, all would have an impact on disabled life by removing or mitigating daily restrictions, but they are externally perceived by the so-called ‘normal’ people (Smith 2009, 18). The consequences of this interpretation transform people with disabilities into labeled members of a protected group, regardless of disabilities (body impairments or social participation restrictions) (Terzi 2009; Shakespeare 2006).
To better understand the concept of disability, we need to overcome the medical and biological conceptions and instead refer to the quality of life. One example of this interpretative vulnus is the case of social researchers who investigate disability. They often do not have enough embodied knowledge and real experience of disabled life, and thus they risk handling disabled people as passive subjects for interviews and scientifically designed observations. This is far from the admirable aims of understanding the needs of the disabled, and freeing them from the limits of social barriers. This means that benefits for researchers could become completely useless and out-of-touch with the real interests of disabled people (Oliver 1996). It is not completely certain that the change in the interpretative perspective about disability will really produce a more comprehensive frame of disabling condition. This framework, within which disability can be defined broadly, encompasses impairments and restrictions that can limit body as well as personal and social perspectives.
This framework is refused by medical and social approaches which treat disability as an external human condition: disability exists only in terms of an effect caused by physical or social limitations. These interpretations ignore that disabilities, whether medical, cultural or social, cannot be only caused, but also constructed, using languages and narratives that can implement the meanings of disability from an internal point of view (On a similar approach, see Smith 2009). While in the medical model, only physicians and specialists can talk about disability, conversely in the social model, disabled people have the priority to speak about their condition and self-depict their legal and social needs. We believe we need a new and comprehensive model which is more sympathetic with reality. Disability has to be considered as a cross-the-board question, concerning everybody. It is not a guilt or a tragedy; rather it is a (possible) human condition. Each of us, at a certain moment of our life, can become a disabled person. This possibility questions the universal condition of life and it constrains us to redefine the transcendental picture of the human condition. In other words, disability informs our culture about the necessity to envision forms of human conditions that do not deal with abstract or decontextualized subjects, but rather with empiric and socially embodied humans. Viewed as an unusual embodiment, disability poses difficult questions about justifying ethical and normative standards of our society (Swain - French - Cameron 2003). We think that new technologies can help us better conceptualize disability as a human condition, and for “new” and “emerging” technologies, we refer to devices and services which improve the human condition and quality of life. This definition can include technological devices, instruments and methods applied to health (specifically to diagnosis, care, and rehabilitation) as well as to instruction, computer interfaces, virtual reality, robotics.
3. The role of technology in our lives
New technologies are applied to every stage of life, from fertility conception to the last breath of life. It is well known that there are numerous bioethical debates about the excessive and overly enthusiastic interconnections between technology, medicine, and human development. In the case of disability, the role of new technologies takes into account different levels of implications: (a) how technologies are applied to disabling conditions and whether they can improve or enhance the bodily and social functions of disabled individuals; (b) how persons with disabilities and all society, thanks to the upgrading gained through new technological applications, can change the meaning of disability.
Regarding point (a), one example is the case of perceptual disabilities where new technologies have concretely helped several essential functions of human life. Spatial navigation devices enable blind individuals to independently navigate both open and closed places by using auditory data or vibro-tactile stimulation through infrared scanners, by optimizing the white canes, which cannot refer to high obstacles, or guide dogs, which can be distracted by environmental stimuli. At the same time, vocal synthesis for blind individuals, as well as visual devices or audio prosthesis for deaf people, can offer entertainment and cultural education such as Internet use, movies, paintings, architecture, and music. Public opinion is still surprised by the number of disabled individuals who enjoy activities, especially in the case of sensorial disabilities. We need to better understand which are the real opportunities in the working and recreational fields for the disabled. This is the case of some public campaigns that define people with real disabilities as imposters, but they may have been just enhanced by new technologies (and for this reason perceived as ‘normal’). In this year alone, for instance, the Italian media has published several articles about presumed false blind individuals who were using the Internet, ignoring the new technologies that give everyone (disabled or not) the opportunity to enjoy the Internet for work and recreation. Thus the media is not helping integration of the disabled because they are promoting a new type of discrimination. In fact, by ignoring the positive linkage between disability and emerging technologies, there is the risk of labeling disabilities. The disabled person is constrained to show his or her abnormal weakness, instead of translating the impairment as a part of his or her narrative and relational identity. We must encourage this type of human enhancement, but the main information sources today for disabled individuals are associations which promote new devices through their journals or websites. We are far from mass distribution because information is restricted and disseminated among people with purchasing power and who can get at the innovative and enhancing technological developments. Moreover the costs of advanced technologies and healthcare can be really high in some cases. The latter issue calls for a separate poverty line for families with disabled members (Braithwaite - Mont 2009).
Regardless of the specificity of medical disability, new technologies have relevant implications in terms of prevention and therapy. In the medical prevention field, there are new screening devices to anticipate the timing of early diagnosis. Scientific studies have demonstrated that the sooner the therapy starts, the better the results can be. Genetic technologies as well as diagnostic instruments are widely applied to investigate correlation between genetic features and pathologies predisposition (Regarding supporting and therapeutic technologies, we can refer to, in the case of motor disabilities, prosthesis, rehabilitation machines, orthopedic devices and, in the most severe cases, wheelchairs, brain computer interfaces, reanimation procedures, as well as drugs and stem cells). Epigenetic studies are researching the role the environment plays when a disabled person is able to elicit skills and talents from his or her disabling status. In all these cases, emerging new technologies can offer to disabled people chances to extend capacities, to empower the body or only some organs and functions, to create new boundaries of the personal identity. As technology blurs the distinction between illness and optimal health, it becomes increasingly difficult to distinguish normal from abnormal, and this represent a concrete chance to rethink our approach to disability. With the help of emerging technologies, disability can be rethought as a way to have access to the world, and not as the result of a deficit that prevented the individual from performing certain functions or activities. Disability can be considered not as a negation of identity, but as a contextual variable of the personal identity, dynamic over time and circumstance, as a meaningful part of it that asks to be comprehended. We can take for instance into consideration the Information and Communications Technology (ICT). This technology is increasingly more useful not only in the case of organic-perceptual limited conditions, but also in the field of cultural, social and political disabilities (by which we mean those of people whose opportunities are limited by their social collocation). Computer science and virtual realities can help us better understand far-away places by letting people travel virtually, thus improving opportunities only previously given by the television and the radio, and giving free and more independent access to culture and education. The link between fiction and reality allows ICT to be a form of human enhancement that mixes the amplification of human knowledge with the investigation on the limitations of disabilities.
This leads us to point (b). Beyond serving disabled people, new technologies can change the image of disability per se. For example, between the ‘70s and ‘90s, scientists in the medical field started to develop devices for the in vivo exploration of human cerebral activity, such as electroencephalogram (EEG), positron emission tomography (PET), magnetic resonance imaging (MRI) and its functional version (fMRI), as well as magnetic and electrical stimulation devices, such as transcranial magnetic stimulation (TMS) and transcranial direct current stimulation (tDCS). The studies of these devices explore cerebral activities in the disabled individuals and let us sometimes find that disabled individuals can do better than healthy subjects, i.e. congenitally blind individuals can perform better in arithmetic skills (Castronovo - Delvenne 2013) and in some spatial bi-dimensional and spatial imagery tasks (for a general review, see: Cattaneo et al. 2008). Similarly, the devices permit us to explore the supramodal organization of cerebral cortex not only in healthy individuals, but also in people who experience sensory limitations. Consequently, we now know that certain brain areas, which in the past were thought to be specifically dedicated to a single sensory modality, are instead similarly activated by different perceptions in both conditions (for a general overview, see: Ricciardi - Bonino - Sani - Pietrini 2008; Ricciardi et al. 2009). This shows us how important the individual skills of disabled persons are to redefine their condition as not handicapped but differently-abled. As the last example shows, there is not a single and standardized brain model and a single structure of the body. The plasticity of our brain shows how normality is an equilibrium that is not obtained once and forever and that rather there are always circuits in the brain that change, organize, and reorganize in response to experience.
Generally speaking, new technologies are trying to unify the understanding of the functional brain’s anatomy with physiological and social processes that influence behavioral development. Such unified understanding of the mechanisms involved in cognitive and emotional development may open up new avenues to view the human value of the differently-abled people as worthy members of the human condition.
4. New technologies give a different meaning to the human condition
Let us consider how a simple electric wheelchair can change the life of a disabled person. A person with a disability who, with the help of a wheelchair, is finally able to enjoy the freedom of movement without being helped by others. Now imagine how this new freedom (reinforced by a technological aid) will help change the quality of that person’s life. The change is composed and it can be referred to the relationship of disabled people with themselves, with the others, and finally with the beliefs that are internalized in the common sense of community. It is easy to understand that, from the perspective of a disabled – a person who is in a situation which can be characterized by an extreme and systematic vulnerability – technology is a therapeutic tool which enhances limited human functions. Assistive technologies and innovation in designing health care devices enable individuals with disabilities and society to select the most appropriate means in accommodating or alleviating limitations. We cannot eliminate the conditions that make us vulnerable with mere technological devices, but they can help us give new meaning to our lives. They may not be able to change the reality, but they can most likely change the meaning that people give to it.
The desire to use technology to help deficiencies and defects becomes something more than a mere desire for immortality or perfection. The diffusion of a culture of assistive technologies represents a challenge that relates the human desire of happiness with the awareness of our finitude. The disabled’s desire of living better is not the same of a Promethean dream of human immortality. Rather, it takes into account the importance that dependency plays in the human condition. Disabilities, new technologies and the human condition are well-connected notions and if we improve one of them, we can improve the others. This is true for many reasons, but we want to focus here on the fundamental one. Disabled individuals cannot be protected until we understand that disability is not a mere pathology, but a universal perspective of life. Disability is an expression of the human condition and not only its conceptual explanation. It cannot be simply conceptualized as a deficiency or human minus. Conversely, disability has shown us that everyone can become disabled, because humans are naturally and culturally vulnerable. We are frail creatures at birth. For this reason, we build societies and create technologies to overcome this difficulties of life, but in so doing we become culturally vulnerable because social life requires to be increasingly supported by artificial implementations. The discourse about disability highlights this debate between natural vulnerability – such as finite being – and social vulnerability – such as individuals taking part in a group for a better life. Whether male or female, whether ‘normal’ or ‘disabled’, we will all grow old or become ill. Even when our preservation is not an issue, we depend on others as friends and helpers. Disability is an ontological part of this human condition. New technologies can provide interpretative elements for a wider medical understanding of disability. At the same time they represent the chance for many disabled people (unjustly marked as an impaired sub-population) to accomplish a more concrete and effective notion of equality.
The human-technology relationship is often imagined as a rational and instrumental conception, where technologies are functionally thought of as human tools. This is not completely true about the technologies applied to disabilities. Welfare, healthcare, and assistive technologies give disabled people the chance to transform their limits into specific opportunities and undergo new experiences they could not previously feel. The debate between technologies and disabilities can be based on specific user-friendly practices, thus changing the human relationship with technology from functional relations to social and affective ones. Those kinds of technologies are defined by Sherry Turkle as ‘relational artifacts’ which “ask their users to see them not as tools but as companions, as subjects in their own right” (Turkle 2005, p. 289).
5. Conclusions
Throughout this paper, we have described the application of new technologies to disabilities, by shedding some light on controversial aspects. We have considered how new technologies contribute to the improvement of disabled life by providing new opportunities. At the same time we are fully aware of the new issues concerning the application of new technologies to our lives. We have discussed the explanatory models of disability. We have seen that in the medical model, physicians and healthcare specialists are mostly concerned with the prevention of disabilities. Instead in the so-called social model, people with disabilities mainly self-represent their legal and relational needs by showing their unequal condition (Nussbaum 2006).
Because of the ever wider use of new technologies in welfare and healthcare contexts, we necessitate a new model of disability that considers cultural as well as biological limitations and opportunities as parts connected with the same perspective of life. The interactions between disability and technology are dynamic and this allow us to overcome static categorization or definitions on disabling condition. The rapid evolution of emerging technologies generates a proliferation of philosophical challenges that have transcended the meaning of disability to seek the meaning of being human.
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