title: Erased: Representations of women's bodies in chronic invisible pain

authors: May, Melody Julianne

subjects: Chronic pain

abstract: Stories of pain stretch metaphors and similes. They infuse verbs into the narrative—it stabs, it burns, it aches—in a desperate attempt to describe what the pain is doing in the body. There is a critical need for accurate communication, either to family and friends, or more importantly, to healthcare professionals. Yet often this crucial connection fails. Honesty about chronic illness and related invisible disability is repeatedly met with confusion, dismissal, or even disdain. So where is the problem? Where is the disconnection occurring? Elaine Scarry argues that pain’s personal and life-destroying nature is nearly impossible to communicate, because its very existence within the body destroys the language needed to express it. This is true. Often pain dismantles our whole world.  We are left only with a guttural scream or the expletive. However, Joanna Bourke argues, ‘people in pain are often highly creative in expressing their suffering’.  We use all the words we need to clearly communicate. This word communicate is important. It has three elements: a sufferer, a witness, and a gap between them. A strange distortion often occurs within this gap; it is polluted with static. While I will be considering the difficulty sometimes experienced in expressing the reality of pain in our bodies, much of this thesis interrogates the gap. 
My research focuses on women in chronic pain because women are four times more likely to have a chronic illness and seven times more likely to have their symptoms misdiagnosed or dismissed as emotional and therefore unreal. This bias is pervasive and needs interrogation. Storytellers are uniquely positioned to provide a voice for the voiceless while simultaneously challenging what is considered normal or ideal. I am concerned with the ideals that create expectations about what “healthy” and “ill” mean and even what it means to be a “normal” woman. These expectations all converge on the body and the lived experience of the chronically ill woman, labelling her at best a failure and at worst a liar. 
The questions I am asking, then, are: How can we communicate chronic pain? How can we help others to listen to what we are communicating? What needs to change within our cultural belief systems in order to understand women with chronic pain? What within our social structures is excluding these women? How is this isolation compounding the suffering of women in chronic pain? And, finally, how can storytelling help address these issues?
My research is specifically focused on contemporary narratives of chronic pain. This is because I am interested in representations that reflect current attitudes and social structures. I examine these texts not only for evidence of authentic representation of the lived experience of pain but also for ways in which the suffering of these women can be alleviated. While I cannot cure chronic illness, I can offer insight into the constructed cultural beliefs that can be dismantled to make a more inclusive world. I believe art has the power to do this, and I believe we need more authentic stories to represent women suffering from chronic illness. 
However, stories of chronic pain and disability are often chaotic. Unlike the familiar cure-or-death endings of traditional disease narratives, these stories have no resolution, and audiences often reject them. When research participants are told a chaotic story of pain and disability, they rewrite it, so desperate is their need to erase the suffering. They long for a hero who overcomes all adversity. This means that illness stories often set impossible standards, isolating women in pain even further.
Therefore, my research includes a creative component. I have written a novel that embeds the chaos of chronic pain within a quest narrative, to anchor readers to familiar structure, and yet offers an authentic voice for those who need representation. There are two separate narratives. The first belongs to Amanda, who has been summoned by the universe (or her cell-phone, she isn’t sure) to find Kelly Wisely and wish her a happy birthday. The second belongs to Kelly Wisely herself, whose pain has thrown her narrative and her life into chaos—her narrative no longer obeys time, nor can it hold any real structure. Her life is in fragments.

text: Erased: Representations of women's bodies in chronic invisible pain Stories of pain stretch metaphors and similes. They infuse verbs into the narrative—it stabs, it burns, it aches—in a desperate attempt to describe what the pain is doing in the body. There is a critical need for accurate communication, either to family and friends, or more importantly, to healthcare professionals. Yet often this crucial connection fails. Honesty about chronic illness and related invisible disability is repeatedly met with confusion, dismissal, or even disdain. So where is the problem? Where is the disconnection occurring? Elaine Scarry argues that pain’s personal and life-destroying nature is nearly impossible to communicate, because its very existence within the body destroys the language needed to express it. This is true. Often pain dismantles our whole world.  We are left only with a guttural scream or the expletive. However, Joanna Bourke argues, ‘people in pain are often highly creative in expressing their suffering’.  We use all the words we need to clearly communicate. This word communicate is important. It has three elements: a sufferer, a witness, and a gap between them. A strange distortion often occurs within this gap; it is polluted with static. While I will be considering the difficulty sometimes experienced in expressing the reality of pain in our bodies, much of this thesis interrogates the gap. 
My research focuses on women in chronic pain because women are four times more likely to have a chronic illness and seven times more likely to have their symptoms misdiagnosed or dismissed as emotional and therefore unreal. This bias is pervasive and needs interrogation. Storytellers are uniquely positioned to provide a voice for the voiceless while simultaneously challenging what is considered normal or ideal. I am concerned with the ideals that create expectations about what “healthy” and “ill” mean and even what it means to be a “normal” woman. These expectations all converge on the body and the lived experience of the chronically ill woman, labelling her at best a failure and at worst a liar. 
The questions I am asking, then, are: How can we communicate chronic pain? How can we help others to listen to what we are communicating? What needs to change within our cultural belief systems in order to understand women with chronic pain? What within our social structures is excluding these women? How is this isolation compounding the suffering of women in chronic pain? And, finally, how can storytelling help address these issues?
My research is specifically focused on contemporary narratives of chronic pain. This is because I am interested in representations that reflect current attitudes and social structures. I examine these texts not only for evidence of authentic representation of the lived experience of pain but also for ways in which the suffering of these women can be alleviated. While I cannot cure chronic illness, I can offer insight into the constructed cultural beliefs that can be dismantled to make a more inclusive world. I believe art has the power to do this, and I believe we need more authentic stories to represent women suffering from chronic illness. 
However, stories of chronic pain and disability are often chaotic. Unlike the familiar cure-or-death endings of traditional disease narratives, these stories have no resolution, and audiences often reject them. When research participants are told a chaotic story of pain and disability, they rewrite it, so desperate is their need to erase the suffering. They long for a hero who overcomes all adversity. This means that illness stories often set impossible standards, isolating women in pain even further.
Therefore, my research includes a creative component. I have written a novel that embeds the chaos of chronic pain within a quest narrative, to anchor readers to familiar structure, and yet offers an authentic voice for those who need representation. There are two separate narratives. The first belongs to Amanda, who has been summoned by the universe (or her cell-phone, she isn’t sure) to find Kelly Wisely and wish her a happy birthday. The second belongs to Kelly Wisely herself, whose pain has thrown her narrative and her life into chaos—her narrative no longer obeys time, nor can it hold any real structure. Her life is in fragments.

year: 2022

title: Success Factors in Interactive Design

authors: Neave, Ryan

subjects: Graphic design

abstract: This research explores the factors that contribute to success in interactive design in contrast to the traditional design process. The paper explores creativity within design, and how successful collaboration works in an interactive design context. The five stages of creativity are introduced, and then there is discussion about creating with an open mind “when you're open to what's possible, you get something new - that's creativity” (Alda, 2016).
Then the study explores the design process by discussing three process models and their uses, particularly their relevance for interactive design. This section also looks at chaos within creating, and describing chaos as a tool for designers to escape the normal way of approaching problems.
Next, the thesis looks at the art of collaboration in regards to an interactive project and discusses the importance of structure when intending to collaborate within a team. This section examines models for successful collaboration.
In Chapter Two, existing interactive projects are reviewed and summarised in the form of case studies. In Chapter Three, a practise-led research methodology discusses how success factors are explored during the production of nine publicly exhibited interactive projects.
The research concludes with success factors for interactive design projects in the form of a tentative new model.

text: Success Factors in Interactive Design This research explores the factors that contribute to success in interactive design in contrast to the traditional design process. The paper explores creativity within design, and how successful collaboration works in an interactive design context. The five stages of creativity are introduced, and then there is discussion about creating with an open mind “when you're open to what's possible, you get something new - that's creativity” (Alda, 2016).
Then the study explores the design process by discussing three process models and their uses, particularly their relevance for interactive design. This section also looks at chaos within creating, and describing chaos as a tool for designers to escape the normal way of approaching problems.
Next, the thesis looks at the art of collaboration in regards to an interactive project and discusses the importance of structure when intending to collaborate within a team. This section examines models for successful collaboration.
In Chapter Two, existing interactive projects are reviewed and summarised in the form of case studies. In Chapter Three, a practise-led research methodology discusses how success factors are explored during the production of nine publicly exhibited interactive projects.
The research concludes with success factors for interactive design projects in the form of a tentative new model.

year: 2016

title: Getting Deep:  Experiences of New Zealand Bodyboarders

authors: Nemani, Mihi Joy

subjects: bodyboarding

abstract: Since the mid 1990s, a growing body of literature on lifestyle sports has produced fresh insights into the nuances, esoteric terminology and social dynamics in an array of lifestyle sport cultures. While surf culture has gained considerable attention from both sociologists and historians, the voices of bodyboarders have been minimal.  Reflecting perceptions held by many in mainstream society, the literature on surf culture tended to marginalize bodyboarding participants, deeming the activity fit for children or teenagers.  Therefore, this project addresses the gap in academic literature on surf culture by adopting a socio-cultural, qualitative approach to give voice to bodyboarders, by revealing some of the complexities within bodyboarding culture, and revealing power relations operating between surfers and bodyboarders in the surf. 

As a three-time world amateur champion female bodyboarder of both Maori and Samoan heritage, I was particularly interested to understand experiences of gender and ethnicity in relation to bodyboarding.  Therefore, I conducted semi-structured interviews with eight bodyboarders living in New Zealand.  To analyse data from the interviews, I employed Bourdieu’s theoretical concepts of habitus, field and capital to explore bodyboarding with the intent of presenting fresh perspectives relating to masculinity and femininity, and experiences of Maori, Pacific Island and New Zealand European bodyboarders.  The participants revealed embodied characteristics of the bodyboarder as well as a variety of strategies used to negotiate space in the surf field.  The experiences of female participants resonated with current literature where opportunities to gain respect were limited based on their marginal position in the male-dominated lifestyle sport culture.  While some female participants successfully negotiated space within the surf field, male bodyboarders revealed other difficulties due to the hyper-masculinity of stand-up surfing culture, and the marginal position of bodyboarders.

In specifically examining the experiences of Maori and Pacific Island participants, I argue that a unique form of cultural capital exists in which respect, courtesy and fairness were given more value than demonstrations of physical capital.  Adopting a socio-cultural approach to analyse the operations of power in the surf field, and particularly how gender and ethnicity affect the experiences of New Zealand bodyboarders, this research project brings “new value to identities and experiences that are marginalized and stigmatized by the larger culture” (Denzin, 2002, p. 486).

text: Getting Deep:  Experiences of New Zealand Bodyboarders Since the mid 1990s, a growing body of literature on lifestyle sports has produced fresh insights into the nuances, esoteric terminology and social dynamics in an array of lifestyle sport cultures. While surf culture has gained considerable attention from both sociologists and historians, the voices of bodyboarders have been minimal.  Reflecting perceptions held by many in mainstream society, the literature on surf culture tended to marginalize bodyboarding participants, deeming the activity fit for children or teenagers.  Therefore, this project addresses the gap in academic literature on surf culture by adopting a socio-cultural, qualitative approach to give voice to bodyboarders, by revealing some of the complexities within bodyboarding culture, and revealing power relations operating between surfers and bodyboarders in the surf. 

As a three-time world amateur champion female bodyboarder of both Maori and Samoan heritage, I was particularly interested to understand experiences of gender and ethnicity in relation to bodyboarding.  Therefore, I conducted semi-structured interviews with eight bodyboarders living in New Zealand.  To analyse data from the interviews, I employed Bourdieu’s theoretical concepts of habitus, field and capital to explore bodyboarding with the intent of presenting fresh perspectives relating to masculinity and femininity, and experiences of Maori, Pacific Island and New Zealand European bodyboarders.  The participants revealed embodied characteristics of the bodyboarder as well as a variety of strategies used to negotiate space in the surf field.  The experiences of female participants resonated with current literature where opportunities to gain respect were limited based on their marginal position in the male-dominated lifestyle sport culture.  While some female participants successfully negotiated space within the surf field, male bodyboarders revealed other difficulties due to the hyper-masculinity of stand-up surfing culture, and the marginal position of bodyboarders.

In specifically examining the experiences of Maori and Pacific Island participants, I argue that a unique form of cultural capital exists in which respect, courtesy and fairness were given more value than demonstrations of physical capital.  Adopting a socio-cultural approach to analyse the operations of power in the surf field, and particularly how gender and ethnicity affect the experiences of New Zealand bodyboarders, this research project brings “new value to identities and experiences that are marginalized and stigmatized by the larger culture” (Denzin, 2002, p. 486).

year: 2013