Conference Presentations by Jaime D Wright
There are many studies that examine the relationship between prayer and health. Typically, these ... more There are many studies that examine the relationship between prayer and health. Typically, these studies look at the correlation between prayer frequency and health outcomes (e.g., see Koenig or Pargament). However, there is increasing attention to the content of such prayers (e.g., see Wuthnow, Cadge, or Cerulo), I hope to build upon and add to this attention to prayer content. Some of the questions that I attempt to answer are: What is prayer anyway? What do women with breast cancer pray about or for? What is the “practical coherence” of such prayers in relation to religious beliefs? Finally, how might the dominance of biomedicine in the field of health and healing constrain what is prayed for? This presentation answers these questions using surveys (n=149) and in-depth interviews (n=47) with women diagnosed with breast cancer who are part of a Kaiser Permanent study of complementary and alternative medicine (Pathways Study, n=4481).
(SSSR, Atlanta, GA, October 2016)
In The God Problem Wuthnow describes how religious middle-class Americans distance themselves fro... more In The God Problem Wuthnow describes how religious middle-class Americans distance themselves from proclamations of supernatural intervention in the everyday world. He attributes this to people wanting to not sound “spooky or weird.” These educated middle-class people, rather, want to sound reasonable. It is a reasonableness grounded in a consensus. However, Wuthnow side-steps a deeper conversation about this consensus. Why does referencing supernatural intervention sound so unreasonable today? How might institutional power shape what is reasonable and what is not? I take up these questions in a limited context: the field of health and healing. Using data from surveys (n=149) and interviews (n=47) of women with breast cancer – who use religion and spirituality to cope with the disease – and historical studies about the relationship between medicine and religion, I argue that the power of the biomedical institution in the field of health and healing constrains religious supernatural claims. While my argument is not as broad as Wuthnow’s, it uses theories of power, institutions, and embodiment to get at a more robust explanation of this aversion to talking about supernatural intervention among those who consider themselves religious and who are integrated into the medical system. In addition, I believe this interpretation of the empirical data through this theoretical framework opens up a conversation about secularization through the medicalization of American common sense.
(Presented at ASR: Aug 19-21; Seattle WA)
http://religionincalifornia.org/
The church-sect typology is commonly used in the study of religion to define four ideal types of ... more The church-sect typology is commonly used in the study of religion to define four ideal types of religious groups or organizations: church, denomination, sect, and cult. The example most often used for “church” is the Medieval Catholic Church, i.e., an exclusively legitimate path to salvation and integral to dominant society. The Medieval Catholic Church had a monopoly on religion and derided or eliminated competitors.
Histories of biomedicine in the U.S. discuss how in the late nineteenth and early twentieth centuries – with the help of the American Medical Association and rapid growth of hospitals and medical schools they endorsed – it became the dominant model of medicine. By the mid-twentieth century it had a monopoly on legitimate health and healing. Any approach to health and healing outside of the medical establishment became viewed as quackery.
Arguably, however, since the late 1960s along with the flourishing of “new” religions and religious experimentalism what has come to be known as complementary and alternative (CAM) medicine has taken a foothold. Combined with this flourishing of alternative and often holistic approaches to human physical and spiritual well-being is the patient insurgency of the 1970s, which questioned and sought alternatives to biomedical authority. These developments have led to patients seeking therapies and understanding illness beyond the confines of the biomedical “churchly” establishment.
I will argue that we can use the church-sect typology to understand contemporary health and healing in the U.S. Biomedicine is church-like while CAM health approaches are often sectarian or cultish, i.e., the latter have various degrees of tension toward dominant social health practices and the biomedical establishment. Studies of how people actually live out their health and illness help illuminate not only the church-sect structure of health and healing, but also how the existing dominance of biomedicine shapes CAM practices, understandings, and expectations.
I will build upon my research of women with breast cancer in the Bay Area who utilize both biomedical and CAM approaches. Not bound by academic purity, patients live out their illness and health in a way that cobbles together elements from the biomedical church as well as from holistic and spiritual cults and sects of well-being. I surveyed 148 women and conducted 47 structured interviews in 2013. This sample of women was taken from the Pathways Study (a Kaiser Permanente Northern California study looking at CAM practices and survivorship outcomes in women diagnosed with breast cancer). The themes explored in my study are related to women’s understandings of health and healing, cancer, conventional medicine, religious/spiritual/holistic beliefs and practices as well as their sense of religious identity and community.
The preliminary findings point to important implications for our aging population of baby boomers and the new structural reality of the Affordable Care Act. Both of these realities will force the American public to confront biomedicine, CAM, illness, and even end-of-life issues in ways far more explicit than we have as a society in our lifetimes.
Not only is breast cancer a disease that can be painful and disfiguring, but because of the histo... more Not only is breast cancer a disease that can be painful and disfiguring, but because of the history of breast cancer many women may understand it as a “death sentence” (or at least a derailing of immediate life goals). Both the bodily and the cultural dimensions of cancer lead to an unsettled time in life. This experience creates a context in which religion can become a helpful resource (or coping mechanism) for women with breast cancer.
This study sampled 350 women from The Pathways Study – a study conducted by Kaiser Permanente Northern California, Division of Research (n=4115 at time of sample) that studies breast cancer survivorship and the use of complementary and alternative medicine. The response rate was 42 percent (n=148) for the initial survey. Of these respondents, 47 opted in for semi-structured interviews. Preliminary textual analysis of these transcribed interviews provides the data for this presentation.
Respondents noted there was a shift in their perceptions of life after the breast cancer diagnosis. Many noted that they experienced “clarity” and many noted that living with cancer creates an uncertainty. For some, religion was a resource for strength and stability: primarily the practice of prayer and through the belief that breast cancer was a part of a larger plan for one’s life. This study suggests that religion is utilized differently during times of serious illness. This qualitative approach allows these women to define and articulate their use of religion within the bodily and cultural context of breast cancer.
Christian Smith’s What Is a Person? provides a well argued case for critical realism. This is imp... more Christian Smith’s What Is a Person? provides a well argued case for critical realism. This is important for sociologists interested in the body and embodiment because critical realism grounds its conception of personhood in a robust understanding of the human body. It is “our embrained bodily selves living in our material and social environments” and endowed with a list of human capacities including our relationships to others that make us human. While Smith does much to emphasize the biological reality of the individual bodies that are the social body, overall his definition of the body is underdeveloped.
Smith acknowledges disease and even the ultimate death of our bodies; however, these characteristics are never integrated into his central schema. Rather, he relies on assumptions about “normal” bodies. He relies on this in order to delineate specific human capacities like consciousness and capacity for abstract reasoning that are necessary to function. He does not specifically exclude those with physical chronic illnesses or disabilities from being “normal,” rather he does not address it. Therefore, this matter is ignored or left untouched.
Simon J. Williams’s work on critical realism, chronic illness, and disability (1999) addresses this lacuna. Williams discusses chronic illness and disability as emergent aspects of personhood and development. Emergence concerns the relational development of the human person and is central in critical realism. Development occurs through the intra-relationships of an individual’s capacities along with the interrelationships of individuals in social contexts.
My research shows that breast cancer has an emergent quality that involves personal and social development. Some women in my study (n=47) discuss cancer as a journey, something that focuses one’s life, helps them become more compassionate, and brings them closer to loved ones. Building on Williams’ work, I argue that the definition of the body must include and incorporate chronic illness and disability as central not marginal to what is “normal.” Such a definition is necessary if we want to maintain one of the key moral dimensions of Smith’s critical realism: human dignity.
Our research needs to take into account that Our research … needs to take into account that belie... more Our research needs to take into account that Our research … needs to take into account that believers (and nonbelievers) are not merely disembodied spirits but that they experience disembodied spirits, but that they experience a material world in and through their bodies "* bodies.
Encyclopedia Articles by Jaime D Wright
Abstracts
Body Piercing:
Body piercing has a long history. Multiple types of piercings date bac... more Abstracts
Body Piercing:
Body piercing has a long history. Multiple types of piercings date back at least to 5000 B.C.E. The most common places on the body to pierce have been the ear (especially the lobe, but also the rim of the outer ear), the nasal septum or nostrils, and areas on or around the mouth and lips. While ear piercing was most common among females in twentieth-century Europe and North America, the period of the 1980s–1990s experienced a body piercing renaissance. Not only were piercing techniques improved and innovated upon, but new types of piercing emerged, such as navel, tongue, nipple, and female genitalia. This body piercing renaissance has roots in the predominately gay male leatherman culture that began in the 1940s, and piercing became a political symbol for gay identity in the 1970s. Since that time body piercing has become more accepted in mainstream culture. The philosophy of the modern primitives, in part, helped to facilitate this by articulating modification practices as individualistic self-expression. Contemporary piercing practices are done for reasons such as beautification/aesthetics, culture, religiosity/spirituality, politics, therapy, and eroticism.
Penile Implants:
Penile beading is the practice of inserting small objects in the penile shaft. The objects inserted subcutaneously in the penile shaft vary across time and region. While this practice has a long history in Asia, it is relatively new in contemporary Europe and North America. Techniques have been improved upon within the sterile and surgical environments of the contemporary body piercing studio. Motivations for this procedure have been cited as primarily erotic; however, other motivations include group status, male potency, and peer pressure.
Scarification and Branding:
Scarification is the deliberate cutting of skin, removal of skin, abrasion to skin, branding of skin, use of chemicals on skin, or use of a cauterization tool on skin with the intention of creating a scar. Clear evidence for scarification dates back to 3300 BCE. Practices of scarification have varied throughout time. Beauty, ritual, eroticism, and therapy are common reasons for scarification practices. The practice has largely been positive in traditional cultures throughout Africa, South America, and Papua, New Guinea. In Europe and North America, the gay and lesbian sadomasochist and modern primitive cultures have innovated on scarring methods. In doing so, they have created cutting and branding practices that result in art, personal expression, and ritual.
Cultural and historical descriptions of body piercing and scarification practices.
Book Reviews by Jaime D Wright
In The Brain’s Body: Neuroscience and Corporeal Politics, Victoria Pitts-Taylor provides a review... more In The Brain’s Body: Neuroscience and Corporeal Politics, Victoria Pitts-Taylor provides a review and critique of neuroscience in social theory. Neuroscience is contributing to social theory in two ways: 1) neuroscientists are increasingly becoming social philosophers and; 2) social theorists interested in embodiment and the body are increasingly depending upon neuroscientific studies to validate their theories. Pitts-Taylor creates a robust dialogue between neuroscience, corporeal sociologies, and critical perspectives in order to elucidate a model for complexly embrained embodiment.
In Witnessing Suburbia, historian Eileen Luhr makes an argument for what she calls the twin pilla... more In Witnessing Suburbia, historian Eileen Luhr makes an argument for what she calls the twin pillars of evangelical activism: “the suburbanization of evangelicalism and the ‘Christianization’ of popular culture” (5). The development of an evangelical youth culture takes place against a backdrop of a burgeoning suburbia—which accounted for nearly half of the total population of the United States by the 1990s. A major theme running through the book is how this evangelical youth culture paradoxically clings to a rebellious outsider status while also embracing the white, middle-class, gender norms of suburban America and evangelical Christianity.
Papers by Jaime D Wright
Qualitative Health Research, 2021
Social scientific studies of social support predominantly focus on the positive associations betw... more Social scientific studies of social support predominantly focus on the positive associations between social support and emotional well-being. The negative aspects of social support have received much less attention. We conducted semi-structured interviews of women with breast cancer (n = 47) to examine the emotional strain associated with social support and how recipients navigate it in ways that protect themselves and their relationships. Based on our analysis of narratives of women’s lived experiences of breast cancer, we found that social support can be perceived negatively and associated with experiences of emotional strain. Interviewees engaged in strategies of avoidance, information control, and cognitive reframing to minimize emotional strain. We applied the concept of emotion work to understand the complexity of emotional strain in this context. The findings highlight the difficulties of social support from a recipient’s perspective and emphasize the importance of perception and agency in navigating this experience.
We examined mechanisms through which social relationships influence quality of life (QOL) in brea... more We examined mechanisms through which social relationships influence quality of life (QOL) in breast cancer survivors. This study included 3,139 women from the Pathways Study who were diagnosed with breast cancer from 2006 to 2011 and provided data on social networks (the presence of a spouse or intimate partner, religious/social ties, volunteering, and numbers of close friends and relatives), social support (tangible support, emotional/informational support, affection, positive social interaction), and QOL, measured by the FACT-B, approximately 2 months post diagnosis. We used logistic models to evaluate associations between social network size, social support, and lower versus higher than median QOL scores. We further stratified by stage at diagnosis and treatment. In multivariate-adjusted analyses, women who were characterized as socially isolated had significantly lower FACT-B (OR = 2.18, 95 % CI: 1.72-2.77), physical well-being (WB) (OR = 1.61, 95 % CI: 1.27-2.03), functional WB (OR = 2.08, 95 % CI: 1.65-2.63), social WB (OR = 3.46, 95 % CI: 2.73-4.39), and emotional WB (OR = 1.67, 95 % CI: 1.33-2.11) scores and higher breast cancer symptoms (OR = 1.48, 95 % CI: 1.18-1.87) compared with socially integrated women. Each social network member independently predicted higher QOL. Simultaneous adjustment for social networks and social support partially attenuated associations between social networks and QOL. The strongest mediator and type of social support that was most predictive of QOL outcomes was "positive social interaction." However, each type of support was important depending on outcome, stage, and treatment status. Larger social networks and greater social support were related to higher QOL after a diagnosis of breast cancer. Effective social support interventions need to evolve beyond social-emotional interventions and need to account for disease severity and treatment status.
Online Resources by Jaime D Wright
Santa Clara University Wiki, May 2012
This is a study of ethical, religious, and general cultural beliefs and attitudes contributing to... more This is a study of ethical, religious, and general cultural beliefs and attitudes contributing to public policy and an individual's decision to end life through the withholding of Artificial Nutrition and Hydration (ANH).
Study Sections:
1. Parameters of Study
2. Terms, Distinctions, and Clarifications of Interest
3. ANH: Some Preliminary Clarifications
3a. Loss of appetite and dehydration
3b. Types of ANH and their risks
4. Natural Dying (Natural Death)
4a. Natural death and the law
4a1. Right to die
5. Withdrawing and Withholding ANH
6. Terminal Illness
6a. Distinction between a terminal illness and an irreversible illness
6b. Mental capacities of the terminally ill
7. Act vs. Omission
8. End of Life Decisions
8a. Medical Ethical Concerns
8b. Religious Concerns
8c. Cultural Concerns
9. Advanced Care Directive
10. Quality of Life
11. Hospice Criteria of Admission
12. Key Distinctions in Medical Ethics
13. Links of Interest
14. Bibliographic link
Parameters of Study
The concentration of this study will be on the terminally ill older population. The first phase of this study will explore existing literature on the subject of withholding or withdrawing ANH (nourishment also termed “alimentation” in some literature). The second phase of this study has two parts. The first is to document the monetary costs of end-of-life care in California and nationally; palliative care will be categorized separately from other medical interventions. The second part of this study proceeds to the more difficult areas: ethical, religious, and cultural beliefs and attitudes pertinent to end-of-life care. Ethical issues around “natural dying” (i.e., withholding or withdrawing ANH for elderly in the terminal phase) will be critical to this study. What ought to be done for the benefit of the individual will need to outweigh the utilitarian benefits derived by savings to society or the state. The intent is not to persuade individuals to end life against their desires, but to broaden the acceptability and possible avenues to end life naturally.
It is generally accepted in the health care field that the withholding of nourishment and fluids does not cause pain at the end of life--albeit this matter is still debated. Stopping nourishment generally results in death within 21 days, ceasing hydration generally results in death within 7 days. The use of pain medicine assists in assuring a painless death.
The eventual goal of the study is to create a framework within which public policy and cultural beliefs and attitudes can be discussed to enable a quality-of-life approach to end-of-life care rather than the mere extension of life.
(May 2012)
Uploads
Conference Presentations by Jaime D Wright
(SSSR, Atlanta, GA, October 2016)
(Presented at ASR: Aug 19-21; Seattle WA)
Histories of biomedicine in the U.S. discuss how in the late nineteenth and early twentieth centuries – with the help of the American Medical Association and rapid growth of hospitals and medical schools they endorsed – it became the dominant model of medicine. By the mid-twentieth century it had a monopoly on legitimate health and healing. Any approach to health and healing outside of the medical establishment became viewed as quackery.
Arguably, however, since the late 1960s along with the flourishing of “new” religions and religious experimentalism what has come to be known as complementary and alternative (CAM) medicine has taken a foothold. Combined with this flourishing of alternative and often holistic approaches to human physical and spiritual well-being is the patient insurgency of the 1970s, which questioned and sought alternatives to biomedical authority. These developments have led to patients seeking therapies and understanding illness beyond the confines of the biomedical “churchly” establishment.
I will argue that we can use the church-sect typology to understand contemporary health and healing in the U.S. Biomedicine is church-like while CAM health approaches are often sectarian or cultish, i.e., the latter have various degrees of tension toward dominant social health practices and the biomedical establishment. Studies of how people actually live out their health and illness help illuminate not only the church-sect structure of health and healing, but also how the existing dominance of biomedicine shapes CAM practices, understandings, and expectations.
I will build upon my research of women with breast cancer in the Bay Area who utilize both biomedical and CAM approaches. Not bound by academic purity, patients live out their illness and health in a way that cobbles together elements from the biomedical church as well as from holistic and spiritual cults and sects of well-being. I surveyed 148 women and conducted 47 structured interviews in 2013. This sample of women was taken from the Pathways Study (a Kaiser Permanente Northern California study looking at CAM practices and survivorship outcomes in women diagnosed with breast cancer). The themes explored in my study are related to women’s understandings of health and healing, cancer, conventional medicine, religious/spiritual/holistic beliefs and practices as well as their sense of religious identity and community.
The preliminary findings point to important implications for our aging population of baby boomers and the new structural reality of the Affordable Care Act. Both of these realities will force the American public to confront biomedicine, CAM, illness, and even end-of-life issues in ways far more explicit than we have as a society in our lifetimes.
This study sampled 350 women from The Pathways Study – a study conducted by Kaiser Permanente Northern California, Division of Research (n=4115 at time of sample) that studies breast cancer survivorship and the use of complementary and alternative medicine. The response rate was 42 percent (n=148) for the initial survey. Of these respondents, 47 opted in for semi-structured interviews. Preliminary textual analysis of these transcribed interviews provides the data for this presentation.
Respondents noted there was a shift in their perceptions of life after the breast cancer diagnosis. Many noted that they experienced “clarity” and many noted that living with cancer creates an uncertainty. For some, religion was a resource for strength and stability: primarily the practice of prayer and through the belief that breast cancer was a part of a larger plan for one’s life. This study suggests that religion is utilized differently during times of serious illness. This qualitative approach allows these women to define and articulate their use of religion within the bodily and cultural context of breast cancer.
Smith acknowledges disease and even the ultimate death of our bodies; however, these characteristics are never integrated into his central schema. Rather, he relies on assumptions about “normal” bodies. He relies on this in order to delineate specific human capacities like consciousness and capacity for abstract reasoning that are necessary to function. He does not specifically exclude those with physical chronic illnesses or disabilities from being “normal,” rather he does not address it. Therefore, this matter is ignored or left untouched.
Simon J. Williams’s work on critical realism, chronic illness, and disability (1999) addresses this lacuna. Williams discusses chronic illness and disability as emergent aspects of personhood and development. Emergence concerns the relational development of the human person and is central in critical realism. Development occurs through the intra-relationships of an individual’s capacities along with the interrelationships of individuals in social contexts.
My research shows that breast cancer has an emergent quality that involves personal and social development. Some women in my study (n=47) discuss cancer as a journey, something that focuses one’s life, helps them become more compassionate, and brings them closer to loved ones. Building on Williams’ work, I argue that the definition of the body must include and incorporate chronic illness and disability as central not marginal to what is “normal.” Such a definition is necessary if we want to maintain one of the key moral dimensions of Smith’s critical realism: human dignity.
Encyclopedia Articles by Jaime D Wright
Body Piercing:
Body piercing has a long history. Multiple types of piercings date back at least to 5000 B.C.E. The most common places on the body to pierce have been the ear (especially the lobe, but also the rim of the outer ear), the nasal septum or nostrils, and areas on or around the mouth and lips. While ear piercing was most common among females in twentieth-century Europe and North America, the period of the 1980s–1990s experienced a body piercing renaissance. Not only were piercing techniques improved and innovated upon, but new types of piercing emerged, such as navel, tongue, nipple, and female genitalia. This body piercing renaissance has roots in the predominately gay male leatherman culture that began in the 1940s, and piercing became a political symbol for gay identity in the 1970s. Since that time body piercing has become more accepted in mainstream culture. The philosophy of the modern primitives, in part, helped to facilitate this by articulating modification practices as individualistic self-expression. Contemporary piercing practices are done for reasons such as beautification/aesthetics, culture, religiosity/spirituality, politics, therapy, and eroticism.
Penile Implants:
Penile beading is the practice of inserting small objects in the penile shaft. The objects inserted subcutaneously in the penile shaft vary across time and region. While this practice has a long history in Asia, it is relatively new in contemporary Europe and North America. Techniques have been improved upon within the sterile and surgical environments of the contemporary body piercing studio. Motivations for this procedure have been cited as primarily erotic; however, other motivations include group status, male potency, and peer pressure.
Scarification and Branding:
Scarification is the deliberate cutting of skin, removal of skin, abrasion to skin, branding of skin, use of chemicals on skin, or use of a cauterization tool on skin with the intention of creating a scar. Clear evidence for scarification dates back to 3300 BCE. Practices of scarification have varied throughout time. Beauty, ritual, eroticism, and therapy are common reasons for scarification practices. The practice has largely been positive in traditional cultures throughout Africa, South America, and Papua, New Guinea. In Europe and North America, the gay and lesbian sadomasochist and modern primitive cultures have innovated on scarring methods. In doing so, they have created cutting and branding practices that result in art, personal expression, and ritual.
Book Reviews by Jaime D Wright
Papers by Jaime D Wright
Online Resources by Jaime D Wright
Study Sections:
1. Parameters of Study
2. Terms, Distinctions, and Clarifications of Interest
3. ANH: Some Preliminary Clarifications
3a. Loss of appetite and dehydration
3b. Types of ANH and their risks
4. Natural Dying (Natural Death)
4a. Natural death and the law
4a1. Right to die
5. Withdrawing and Withholding ANH
6. Terminal Illness
6a. Distinction between a terminal illness and an irreversible illness
6b. Mental capacities of the terminally ill
7. Act vs. Omission
8. End of Life Decisions
8a. Medical Ethical Concerns
8b. Religious Concerns
8c. Cultural Concerns
9. Advanced Care Directive
10. Quality of Life
11. Hospice Criteria of Admission
12. Key Distinctions in Medical Ethics
13. Links of Interest
14. Bibliographic link
Parameters of Study
The concentration of this study will be on the terminally ill older population. The first phase of this study will explore existing literature on the subject of withholding or withdrawing ANH (nourishment also termed “alimentation” in some literature). The second phase of this study has two parts. The first is to document the monetary costs of end-of-life care in California and nationally; palliative care will be categorized separately from other medical interventions. The second part of this study proceeds to the more difficult areas: ethical, religious, and cultural beliefs and attitudes pertinent to end-of-life care. Ethical issues around “natural dying” (i.e., withholding or withdrawing ANH for elderly in the terminal phase) will be critical to this study. What ought to be done for the benefit of the individual will need to outweigh the utilitarian benefits derived by savings to society or the state. The intent is not to persuade individuals to end life against their desires, but to broaden the acceptability and possible avenues to end life naturally.
It is generally accepted in the health care field that the withholding of nourishment and fluids does not cause pain at the end of life--albeit this matter is still debated. Stopping nourishment generally results in death within 21 days, ceasing hydration generally results in death within 7 days. The use of pain medicine assists in assuring a painless death.
The eventual goal of the study is to create a framework within which public policy and cultural beliefs and attitudes can be discussed to enable a quality-of-life approach to end-of-life care rather than the mere extension of life.
(May 2012)
(SSSR, Atlanta, GA, October 2016)
(Presented at ASR: Aug 19-21; Seattle WA)
Histories of biomedicine in the U.S. discuss how in the late nineteenth and early twentieth centuries – with the help of the American Medical Association and rapid growth of hospitals and medical schools they endorsed – it became the dominant model of medicine. By the mid-twentieth century it had a monopoly on legitimate health and healing. Any approach to health and healing outside of the medical establishment became viewed as quackery.
Arguably, however, since the late 1960s along with the flourishing of “new” religions and religious experimentalism what has come to be known as complementary and alternative (CAM) medicine has taken a foothold. Combined with this flourishing of alternative and often holistic approaches to human physical and spiritual well-being is the patient insurgency of the 1970s, which questioned and sought alternatives to biomedical authority. These developments have led to patients seeking therapies and understanding illness beyond the confines of the biomedical “churchly” establishment.
I will argue that we can use the church-sect typology to understand contemporary health and healing in the U.S. Biomedicine is church-like while CAM health approaches are often sectarian or cultish, i.e., the latter have various degrees of tension toward dominant social health practices and the biomedical establishment. Studies of how people actually live out their health and illness help illuminate not only the church-sect structure of health and healing, but also how the existing dominance of biomedicine shapes CAM practices, understandings, and expectations.
I will build upon my research of women with breast cancer in the Bay Area who utilize both biomedical and CAM approaches. Not bound by academic purity, patients live out their illness and health in a way that cobbles together elements from the biomedical church as well as from holistic and spiritual cults and sects of well-being. I surveyed 148 women and conducted 47 structured interviews in 2013. This sample of women was taken from the Pathways Study (a Kaiser Permanente Northern California study looking at CAM practices and survivorship outcomes in women diagnosed with breast cancer). The themes explored in my study are related to women’s understandings of health and healing, cancer, conventional medicine, religious/spiritual/holistic beliefs and practices as well as their sense of religious identity and community.
The preliminary findings point to important implications for our aging population of baby boomers and the new structural reality of the Affordable Care Act. Both of these realities will force the American public to confront biomedicine, CAM, illness, and even end-of-life issues in ways far more explicit than we have as a society in our lifetimes.
This study sampled 350 women from The Pathways Study – a study conducted by Kaiser Permanente Northern California, Division of Research (n=4115 at time of sample) that studies breast cancer survivorship and the use of complementary and alternative medicine. The response rate was 42 percent (n=148) for the initial survey. Of these respondents, 47 opted in for semi-structured interviews. Preliminary textual analysis of these transcribed interviews provides the data for this presentation.
Respondents noted there was a shift in their perceptions of life after the breast cancer diagnosis. Many noted that they experienced “clarity” and many noted that living with cancer creates an uncertainty. For some, religion was a resource for strength and stability: primarily the practice of prayer and through the belief that breast cancer was a part of a larger plan for one’s life. This study suggests that religion is utilized differently during times of serious illness. This qualitative approach allows these women to define and articulate their use of religion within the bodily and cultural context of breast cancer.
Smith acknowledges disease and even the ultimate death of our bodies; however, these characteristics are never integrated into his central schema. Rather, he relies on assumptions about “normal” bodies. He relies on this in order to delineate specific human capacities like consciousness and capacity for abstract reasoning that are necessary to function. He does not specifically exclude those with physical chronic illnesses or disabilities from being “normal,” rather he does not address it. Therefore, this matter is ignored or left untouched.
Simon J. Williams’s work on critical realism, chronic illness, and disability (1999) addresses this lacuna. Williams discusses chronic illness and disability as emergent aspects of personhood and development. Emergence concerns the relational development of the human person and is central in critical realism. Development occurs through the intra-relationships of an individual’s capacities along with the interrelationships of individuals in social contexts.
My research shows that breast cancer has an emergent quality that involves personal and social development. Some women in my study (n=47) discuss cancer as a journey, something that focuses one’s life, helps them become more compassionate, and brings them closer to loved ones. Building on Williams’ work, I argue that the definition of the body must include and incorporate chronic illness and disability as central not marginal to what is “normal.” Such a definition is necessary if we want to maintain one of the key moral dimensions of Smith’s critical realism: human dignity.
Body Piercing:
Body piercing has a long history. Multiple types of piercings date back at least to 5000 B.C.E. The most common places on the body to pierce have been the ear (especially the lobe, but also the rim of the outer ear), the nasal septum or nostrils, and areas on or around the mouth and lips. While ear piercing was most common among females in twentieth-century Europe and North America, the period of the 1980s–1990s experienced a body piercing renaissance. Not only were piercing techniques improved and innovated upon, but new types of piercing emerged, such as navel, tongue, nipple, and female genitalia. This body piercing renaissance has roots in the predominately gay male leatherman culture that began in the 1940s, and piercing became a political symbol for gay identity in the 1970s. Since that time body piercing has become more accepted in mainstream culture. The philosophy of the modern primitives, in part, helped to facilitate this by articulating modification practices as individualistic self-expression. Contemporary piercing practices are done for reasons such as beautification/aesthetics, culture, religiosity/spirituality, politics, therapy, and eroticism.
Penile Implants:
Penile beading is the practice of inserting small objects in the penile shaft. The objects inserted subcutaneously in the penile shaft vary across time and region. While this practice has a long history in Asia, it is relatively new in contemporary Europe and North America. Techniques have been improved upon within the sterile and surgical environments of the contemporary body piercing studio. Motivations for this procedure have been cited as primarily erotic; however, other motivations include group status, male potency, and peer pressure.
Scarification and Branding:
Scarification is the deliberate cutting of skin, removal of skin, abrasion to skin, branding of skin, use of chemicals on skin, or use of a cauterization tool on skin with the intention of creating a scar. Clear evidence for scarification dates back to 3300 BCE. Practices of scarification have varied throughout time. Beauty, ritual, eroticism, and therapy are common reasons for scarification practices. The practice has largely been positive in traditional cultures throughout Africa, South America, and Papua, New Guinea. In Europe and North America, the gay and lesbian sadomasochist and modern primitive cultures have innovated on scarring methods. In doing so, they have created cutting and branding practices that result in art, personal expression, and ritual.
Study Sections:
1. Parameters of Study
2. Terms, Distinctions, and Clarifications of Interest
3. ANH: Some Preliminary Clarifications
3a. Loss of appetite and dehydration
3b. Types of ANH and their risks
4. Natural Dying (Natural Death)
4a. Natural death and the law
4a1. Right to die
5. Withdrawing and Withholding ANH
6. Terminal Illness
6a. Distinction between a terminal illness and an irreversible illness
6b. Mental capacities of the terminally ill
7. Act vs. Omission
8. End of Life Decisions
8a. Medical Ethical Concerns
8b. Religious Concerns
8c. Cultural Concerns
9. Advanced Care Directive
10. Quality of Life
11. Hospice Criteria of Admission
12. Key Distinctions in Medical Ethics
13. Links of Interest
14. Bibliographic link
Parameters of Study
The concentration of this study will be on the terminally ill older population. The first phase of this study will explore existing literature on the subject of withholding or withdrawing ANH (nourishment also termed “alimentation” in some literature). The second phase of this study has two parts. The first is to document the monetary costs of end-of-life care in California and nationally; palliative care will be categorized separately from other medical interventions. The second part of this study proceeds to the more difficult areas: ethical, religious, and cultural beliefs and attitudes pertinent to end-of-life care. Ethical issues around “natural dying” (i.e., withholding or withdrawing ANH for elderly in the terminal phase) will be critical to this study. What ought to be done for the benefit of the individual will need to outweigh the utilitarian benefits derived by savings to society or the state. The intent is not to persuade individuals to end life against their desires, but to broaden the acceptability and possible avenues to end life naturally.
It is generally accepted in the health care field that the withholding of nourishment and fluids does not cause pain at the end of life--albeit this matter is still debated. Stopping nourishment generally results in death within 21 days, ceasing hydration generally results in death within 7 days. The use of pain medicine assists in assuring a painless death.
The eventual goal of the study is to create a framework within which public policy and cultural beliefs and attitudes can be discussed to enable a quality-of-life approach to end-of-life care rather than the mere extension of life.
(May 2012)