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Unheard Voices: The Lived Leisure Travel Experiences of Individuals With Early-Onset Parkinson's in New Zealand

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Thesis(1.58 MB)

Date

2024

Authors

Atkinson, Chris

Supervisor

Gillovic, Brielle
McIntosh, Alison

Item type

Thesis

Degree name

Master of Philosophy

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Publisher

Auckland University of Technology

Abstract

This thesis aims to explore and interpret the lived leisure travel experiences of individuals with Early-Onset Parkinson’s (EOP) in New Zealand. Parkinson’s is a neurodegenerative brain condition, and EOP applies to those individuals diagnosed before 50 years of age. While Parkinson’s and EOP are typically considered to be a ‘disease’ in the medical world, the World Health Organization asserts that the condition results in high rates of disability and thus the need for care. Hence, in this thesis, EOP is positioned as a disability, and simply referred to as EOP. Tourism has been argued to be barrier-laden and exclusionary of people with disabilities (PwD), which can lead to marginalisation and social inequality. Yet, in an ideal world, tourism should be equally accessible to and inclusive of all people, including those who live with disability. Like people with different dimensions of disability, individuals with EOP are socially marginalised, yet they may still wish to participate in leisure experiences, including travel and tourism, as a means of enhancing their quality of life, physical health, psychological well-being, and social interaction. Research into the lived leisure travel and tourism experiences of people with different dimensions of disability is growing; however, this is predominantly focused on people with physical and sensory disabilities. While studies focusing on cognitive disabilities are emerging, there is a lack of work on EOP in existing scholarship. This interpretive phenomenological study seeks to give voice to individuals with EOP and bring their lived leisure travel experiences to life. It employed semi-structured interviewing with 10 participants in New Zealand. Three key themes emerged inductively from the thematically analysed data, namely: (1) (In)visibility of EOP in travel; (2) Sense of urgency to travel; and (3) Managing symptoms during travel. (In)visibility of EOP in travel reveals how, within the context of travel, individuals with EOP experience the effects of their symptoms presenting as either invisible, visible, or both, to others. This can result in individuals expressing a felt need to disclose the cause of their EOP symptoms. Sense of urgency to travel reveals, among other things, that the urgency to travel for individuals with EOP is seemingly greater than for those with terminal illnesses, because of the time-bound physical and cognitive restrictions that EOP creates. Managing symptoms during travel reveals the importance of accurate information for preplanning, and both the need and desire for a companion to accompany the travel of individuals with EOP. As the only study at the time of writing to explore EOP within the burgeoning body of accessible tourism scholarship, either internationally or in New Zealand, this research augments existing understandings of PwD by adding a new body of information about another dimension of disability, EOP, that has not previously been considered and gives voice to the leisure travel experiences of those living with EOP. In exploring and revealing these experiences, it is hoped that unheard voices become heard, in both inquiry and industry alike, helping break the cycle of marginalisation of PwD in tourism, through increased awareness, understanding, and empathy.

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Permanent link

http://hdl.handle.net/10292/18868

Collections

Masters Theses
Tourism For All NZ Research Group