Phenomenology Of Vision Loss

Abstract

The present paper covers numerous issues that are subject to research by neuroscientists, philosophers, psychologists, clinicians, as well as special education teachers. The main objective of the study is to achieve a deeper understanding of the phenomenon of vision loss in human beings as a changing phenomenon. One of the goals of the study is further development of a research study published as ‘Perception in a Person with Visual Impairment in the Context of Imagination Specifics’. How does the phenomenon of perceptual experience and imagination in a person change in the situation of vision loss? The phenomenon of gradual vision loss is highly specific, and its characteristic features cannot be summarized quantitatively. The qualitative study focused on the participants’ life stories. Research data were collected by means of written and oral questionnaires. The data were supported by a review of relevant documents. The data evaluation process was based on a description of the phenomena, development of clusters, recognition of patterns, and identification of associations. The final part of the study is a result of a comparison of the participants’ subjective experiences. Elements of triangulation were used and a qualitative approach was followed. This study helped develop the authors’ previous qualitative research. The above mentioned publication presents a comparison of cases of persons who underwent various stages of vision loss from low vision to blindness. In the present research project (Ref. No. IGA_PdF_2017_013), the authors focused on persons with gradual vision loss, i.e. those with residual vision.

Keywords: Phenomenologyvision lossperception

Introduction

According to the World Health Organization (2014), there are as many as 39 million blind people and 246 million people with low vision worldwide. In total, this amounts to some 285 million people with visual impairment. The majority (82%) of the total number of persons with visual impairment are adults over 50 years of age. Vision loss need not necessarily mean complete blindness. Depending on the etiology of visual impairment and the overall development of an individual, the phenomenon of vision loss is accompanied by various person-dependent specifics. The text below presents two cases of individuals who in the course of their lives experienced several turning points including progression of their medical condition. The background of the research will be used to describe the cases of vision loss.

Problem Statement

The term vision loss is usually understood by the general public as complete blindness. Blindness is then combined with free associations such as perception of darkness, white stick, guide dog. Apart from congenital complete blindness, vision loss is rather a developing process. Although special education of persons with visual impairment considers impairment a state, it should be noted that vision loss may be a state but also a situation that changes in the context of internal as well as external conditions. Vision loss is a phenomenon just as vision is. As added by Petrů (2007), if we want to understand a phenomenon, firstly we need to examine its ‘disorders’. Examining differences can help formulate hypotheses about the hidden functional organization of a system.

A qualitative description of vision loss is based on a holistic and phenomenological concept, while it is important to focus on specific experience of an individual. A person with visual impairment is not merely an interpretation of an aspect of visual impairment, a number, a term or definition, but is a human being, and the invariability of the condition or situation caused by the visual impairment is a matter of attitudes and interpretation (Majerová, 2016). According to Barash (2013), the attitude to visual impairment depends on what people believe in and what the interpretation of blindness means to them. At the same time, a holistic and eco-holistic approach to human beings needs to be emphasised.

Although holistic issues have always existed, these approaches started to be considered for the purposes of structurally complex objects and processes – computers, programming languages, development of numerical methods, development of new measuring methods, theories of limit states, new ways of information processing (Přemysl, Marek et al., 2013). For a modern scientist, thinking about any scientific issue should involve consideration of the whole context in order to be able to define the direction which is the core focus of the scientist. First of all, an individual with visual impairment should be considered in a comprehensive bio-psycho-socio-spiritual context. Yet, the traditional holistic approach deals primarily with social and humanity-oriented aspects with a minimum focus on eco-holism. But focusing on environmental issues should be as important as deeper understanding of some phenomena, one of which is globalization. Clapp, Dauvergne (2005) add that globalization is a multidimensional process characterized by restructuring and integration of world economies, institutions and the civil society. Today, we could use terms such as globalizing political economy or social and structural origin of environmental degradation; these terms would aptly portray the current setting of the civilization (Kutting, 2004). The planet Earth and the civilized society cannot be separate forms, but form a single life cycle. At the same time, the development of the civilization, the environment, and the speed of scientific progress are greatly influenced by political and economic structures. And it is the ethics of research in all scientific fields that should take into account the issues mentioned above.

Regarding the above mentioned theoretical background and with respect to the aspects of qualitative research, Majerová (2016, p. 20) states that ‘an individual with visual impairment is not a technical term but rather a person characterized by a certain condition of the visual analyser and methods of information processing.’ The current status of the visual analyser can have an ophthalmological, biological, but also socio-psychological or spiritual dimension. Similarly, vision loss as a process has the same dimensions, as shown in Table 01 . As added by Růžičková, Kroupová, Lopúchová (2016), the issue is closely correlated with various perspectives, consequences and determinants of quality of life of the target group.

Regarding the above mentioned aspects of the issue, a person with visual impairment is a coherent entity with many dimensions of being, numerous dimensions of quality of life, a human being working with information, an active part of the society. The objective of the society should be to maintain an active approach in the life of each member and to provide the conditions necessary to facilitate the changes of the approach to an individual with impairment.

Research Questions

Vision loss is a difficult life situation that influences not only visual perception and its transformations, but also changes the internal dimension of the person, including the perception of oneself. Mental conditions, qualities, processes and emotions associated with vision loss are by far not the only aspects influencing this process. Adaptation to a new life situation takes place in the context of consciousness, unconsciousness and meta-consciousness. On the one hand there are modalities in the consciousness of an individual, on the other hand there is awareness of vision loss (consciousness and awareness are not identical terms). Awareness of impaired perception and the transformation of internal images cause the individual to turn inwards, stay in solitude, and meet oneself and the new reality. All this in order to, after the change takes place, be able to go ‘out’ again – back to life. Throughout the whole transformation process, the perception and imagination of an individual changes in the context of the progression of visual impairment. From this perspective, the process of transformation includes not only the way of the person’s perception and the images that the person develops (Majerová, 2016). The transformation – the phenomenon of vision loss will be further analysed in the context of the author’s research. The research part builds on a qualitative research study presented in a publication entitled ‘Perception in a Person with Visual Impairment in the Context of Imagination Specifics’. In the publication the author presents ‘stories’ of research participants and the transformation of their perceptual experiences in the context of imagination. The author proceeds from etiological aspects of the participants’ visual impairment and their recollections to everyday life. The main focus is on the perception of the participants in the conditions of vision loss, their imagination, dreams and mental representations. The path follows a hermeneutical spiral, as shown in the situational map below (Figure 01 ).

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The qualitative study presented in the mentioned publication focused on a target group of persons after vision loss. For the purposes of the research, Majerová (2016) uses the category of vision loss, i.e. persons with previous visual experience. In the present paper, the existing research was complemented with other cases. Following the previous research, the main research question of the present study is as follows: How does the phenomenon of perceptual experience and imagination change in persons with vision loss?

Purpose of the Study

The main objective of the study is to achieve a deeper understanding of the phenomenon of vision loss in human beings as a changing phenomenon. One of the goals of the study is further development of a research study published as ‘Perception in a Person with Visual Impairment in the Context of Imagination Specifics’ (Majerová, 2016). The phenomenon of gradual vision loss is highly specific, and its characteristic features cannot be summarized quantitatively. Qualitative research provides an opportunity to view vision loss as a ‘live’ experience. The study focused on the participants’ life stories. This approach enabled a closer look at this phenomenon, which is still under development.

Research Methods

The main data collection methods included a qualitative questionnaire, in-depth interview, study of documents and other resources. Regarding the issue and its dimensions, the data analysis was carried out by means of a descriptive approach (comparison, development of clusters, identification of patterns, comparisons, searching for associations). The key approach in the present study was to focus on the cases by means of triangulation (theory, resources, data, explicit), including the application of the hermeneutical spiral principle.

For more efficient and easier data handling the RQDA project (software programme) and Adele Clarke (Clarke, 2015) approach were used. The publication by Clarke (2010) entitled ‘Situational Analysis: Grounded Theory after the Postmodern Turn’ addresses not only the situational analysis, grounded theory and postmodern turn. The book provides modern researchers with a variety of interesting suggestions on data handling.

In the present research, data sections were classified by means of three types of maps – messy maps, situational maps and positional maps. Some of these projections will be mentioned in this paper, although it only includes a partial selection. The present text cannot cover all data material contained in the researcher’s journal.

Findings

The following part of the text focuses on a comparison of cases analysed in the context of the follow-up research. The comparison also uses existing data materials published in the scientific book mentioned above. The cases are compared in terms of their specifics regarding the phenomenon of vision loss. The cases are compared in the following four areas: origin of the vision loss; specifics of perception regarding the vision loss; imagination, visualization, dreams; coping in everyday life.

How did the vision loss occur?

The vision of participant 1 (22 years old) is currently on the border of low vision and practical blindness (residual vision). The etiology of the visual impairment was identified by the physician as microphthalmia. Regarding the participant’s vision loss, an important turning point was around 13 years of age, when the left eye was affected by complete retinal detachment with subsequent vision loss in this eye. Between fifteen and eighteen years of age, the participant’s vision further deteriorated (flashes in the visual field), with subsequent eye inflammation. Until adulthood, participant 2 (38 years old) did not know that she suffered from Stargardt disease. She was prescribed glasses to correct vision when she was 12 years old. When she was 24, she still wore glasses for short-sightedness. After her child was born (24 years of age), the participant had a bicycle accident, after which her vision began to deteriorate. At the age of 36, the participant was also diagnosed with elevated intraocular pressure and glaucoma. Now her visual acuity is 0.1. From a developmental perspective, the participants’ recollections of their visual experience from childhood to the present can be compared using the following situational maps.

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Although in terms of etiology the two cases differ, both individuals have visual experience and a limited ability of visual perception, which they use. The question for a longitudinal survey is how these cases are going to develop in the future.

Conclusion

The perceptual process provides an opportunity to complete the perception with an image or picture from the past. A sighted individual completely relies on the current perception, while a visually impaired person (with residual vision) uses perception in the context of imagination. This system works as long as the person has some residual vision. This stage is followed by individual development, during which the ability of visualization changes. Renowned publications, such as a study by Sacks (Sacks, 2011) or autobiography by Hull (Hull, 2013) suggest that the visual cortex can be activated after complete vision loss together with an ability to generate adequate images, or can be completely suppressed without any possibility of producing visual images in the mind (in which case other functions are taken over as a result of the plasticity of the brain). In an individual with vision loss the activity of the visual cortex is not weakened, on the other hand it is more sensitive and active. The visual cortex, which is denied visual perceptions, requires new functions – in some individuals space is provided for imagination with rich visual elements, in others perception is shifted to other than visual perceptions and images. The world of persons with severe visual impairment might be rich in inter-sensory meta-modal states, i.e. certain “inter” states, which cannot be described by any common language. As a result, a person in a situation of visual impairment might have the ‘ear of mind’, ‘nose of mind’, and perhaps even ‘vision of mind’ (Sacks, 2011). The above mentioned comparison of the two cases showed the development of the phenomenon of gradual vision loss throughout several years. The question that remains is how the cases of our participants will develop in the future.

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