ANEXO G: ENTREVISTA SYLVANA Su edad?

Carel (2013a, 2013b) argues that illness imposes limitations on the body and hereby pushes it to its limits. In so doing, illness sheds light on aspects of life that usually go unnoticed. In this way, we can see the close ties between Carel‟s body as limit case to the dys-appearing body as described by Paterson and Hughes (1999).

54 In terms of limitations imposed on someone with a visual impairment, Carel would argue that losing one‟s eyes would be the limit case of seeing. However, in-between seeing and total blindness, more moderate forms of limitation exist, such as near-sightedness, using glasses, partial sight, detection of movement, and so on. Each of these, she goes on to argue,

illuminates other parts of the phenomenon of seeing through modifying certain aspects of it (reading, assisted mobility and so on).

Just like illness, the later acquisition of a disability removes us from our familiar, ordinary life. It unhinges the taken-for-granted structure of our experience and, in so doing, reveals our normal being-in-the-world by pushing it to its limits. However, unlike illness, people with disabilities do not always have a familiar, nondisabled past to reflect upon. Often, they are thrown into the world with their already constructed disabled bodies. Using Carel‟s

conception, I argue that for people who were disabled from birth, their “out of the ordinary worlds” become evident, not in “felt worlds”, but in the limitations imposed on them. Furthermore, seeing how nondisabled people go about the world also highlights these limitations to the disabled person. Yet, imposed limitations are also felt by people with acquired disabilities, but they experience it in tandem with the disruption of their taken-for- granted bodies.

Usually, we have an unquestioning, taken-for-granted trust and certainty in our body‟s ability to perform everyday tasks of daily living. We go on living, thinking and doing; secure in the knowledge that our bodies will readily yield to our demands. In the words of Edmund Husserl (1970) “To live is always to live-in-certainty-of-the-world” (p. 142). This is what Heidegger calls, “being able to be” (cited in Carel, 2013a). However, when confronted with imposed limitation, the body‟s functioning is disrupted and the certainty of our bodies move to the forefront of our awareness (the body dys-appears).

55 This certainty in our bodies, also encapsulates the trust that each movement or perception of our bodies carries with it the innate horizon of possibilities. Typically we have the option of choosing amongst a range of possibilities; accepting some and rejecting others. When walking past a library, for example, I may choose to enter or walk past it. If I decide to enter, I have the choice of searching for a book, going directly to the librarian, working on the computer, and so on. If I choose searching for a book on my own, I can go to the shelf, search for the book and start reading through it. Now, I am presented with the option of taking it out or putting it back on the shelf. However, when I cannot see – when I am blind – my horizon of possibilities shrinks. Walking past the library, I may not even be aware of the existence of the library – thus leaving me with no option of entering it. However, let us say I am deliberately walking to the library. Upon entering the library, I may not be able to search for the book directly, since I would be unable to see and find the book. If the computer does not have a screen reader, this option might also be closed to me. So, I will have to ask the librarian or someone else for assistance finding the book. When, finally, I have the book, I cannot simply open the book and read it. I will have to take it out, ask someone to scan it into an accessible format for me, read through it and then decide whether I want it or not. In this example, we can see how not only possibilities are limited, but time is also altered. It therefore comes as no surprise that Hass (2008) argues that a limited horizon of options changes one‟s entire

existence. In other words, being unable to see does not mean only the loss of physical sight, but also entails a narrowing of possibilities that changes one‟s being-in-the-world. And suddenly one becomes “unable to be” (Carel, 2013a).

Disability, like somatic illness, also shrinks the innate possibilities of typically useful objects (Carel, 2013b). A practical tool, like a pen, loses its usefulness as a ready-to-hand-entity and morphs into a present-at-hand entity, which confronts us with its empty meaning and

56 However, in my sightlessness, I have no mainstream use for it. I cannot write with it, I cannot see what someone else wrote with it; in my hands it becomes a useless object without

meaning. Of course I can retain some meaning by using the pen as a hairpin; but in this, the main purpose of the pen in its everyday usage is lost.

Once again, one‟s entire being-in-the-world is altered, for the loss of meaning does not pertain to a single object; it changes one‟s entire interaction with objects in the environment. It is not just that book, that library or that pen that become useless and unattainable, but the entire environment becomes hostile and uninviting. As Paterson and Hughes (1999) pointed out in the section on dys-appearance, the disabled body realises that this world is not its home.

And so, it should come as no surprise that the limitations imposed on someone with a disability often do not fail to contaminate social worlds (Carel, 2013a). For example, a visually impaired person may not be able to participate in social activities such as football or tennis. Furthermore, the reactions of others, as discussed before, may cause the disabled person to withdraw from socialising and/or from speaking freely about the disability. In this way, spontaneous social interactions are limited; as it is clouded by the reality and imaginings of disabled life. This leads Carel (2013a) to write movingly, “It is not only physical possibility that suffers in the hands of illness. It is ways of being and ways of being-with that suffer” (p. 64). “I shall never be able to board a train, walk down the street or smile at a stranger in a way that would be unfettered by my illness” (Carel, 2013a, p. 63).

Another issue that needs consideration is the reality of limited choices for disabled people in South Africa (Watermeyer, 2013; Watermeyer & Swartz, 2008). For example, the public transport in South Africa is mostly dangerous and inaccessible, leaving disabled people dependent on others.

57 It is thus clear that often people with disabilities, like those who are ill, have to face

various limitations, either inherent to their disability or imposed on them by society.