Dutiful Love

Empowering Individuals and Families Affected by Mental Illness

Elizabeth L. Hinson-Hasty

• Publisher: Fortress Press
• Year: 2021
• Print ISBN: 9781506464886
• eBook ISBN: 9781506464893
• Topic: Theology & Religion
• Subtopic: Psychiatry & Mental Health

Elizabeth L. Hinson-Hasty pursues places where care for people with serious mental illness and their families is unraveled in the United States. She picks up threads of empowerment from the Christian tradition to address the distinctive circumstances of individuals and families affected by mental illness, and draws upon her own experiences as the sibling of someone with serious mental illness (SMI). As a scholar of theology and Christian ethics, the author challenges the traditional theological explanations of disability and madness and the public policies that try to fit people with SMI into boxes and checklists made for those with minds and bodies society values as ideal.

Dutiful Love explores the distinctive relationship between self-sacrificial love and caregiving when that duty to care extends over the course of an entire lifetime because of social limitations placed upon people with mental illness. Hinson-Hasty investigates how the Christian theological tradition shapes our Western understanding of normal and abnormal minds and bodies. This approach to mental and physical impairment associates healing with curing but neglects the empowerment thread that is part of the gospel narrative. The author encourages caregivers (whether professionals, friends, or families) to think about the concept of self-giving as an alternative to self-sacrifice. In the context of families impacted by mental illness or degenerative disease, healing is more synonymous with presence. Intentional presence involves self-giving, listening, contemplation, prophetic truth-telling, and walking with another so that isolation, stigma, and shame no longer define the social realities of people with mental illness, their siblings, or their larger families.

The book includes discussion questions, making it an ideal resource for individual reflection, church study groups, and college, seminary, and university classrooms.

Part I

Heading into Households and Crawl Spaces

Chapter One

Being Parents and Children in a Culture of Stigma and Shame

Stigma (etymology: Greek)

A mark made upon the skin by burning with a hot iron (rarely, by cutting or pricking), as a token of infamy or subjection; a brand. Also figurative.

Figurative. A mark of disgrace or infamy; a sign of severe censure or condemnation, regarded as impressed on a person or a thing; a “brand.”

—Oxford English Dictionary

A lot of attention is given in our society and in Christian congregations to considering different types of families and ways of organizing family life and to ensuring for their well-being. Ethicist Gloria Albrecht makes the case that these debates about families in church and society often assume a particular form “as an ideal in contrast to which other forms of family have been found deficient, even dysfunctional.”1 “Ideal” families are not dependent on others to ensure their own well-being or provide for the needs of all members. “Good” parents produce children who are seemingly free from problems, prevent them from living in poverty, protect them from violence, and ensure their educational success. It is also quite common in our culture for successful children to be used as evidence of good parenting. Think about the many promotional posts made by parents on social media of children winning academic awards, athletic contests, or other competitions. Assumptions made about “ideal” or “good” families rarely, if ever, incorporate serious mental illness.

Consider briefly the experiences of two mothers. Liza Long first began sharing her feelings about her son’s serious mental illness by blogging. In her memoir, The Price of Silence, she writes, “I wanted to have the perfect family. . . . I thought I could wish my child well, that if I prayed hard enough, God would make it all better.”2 Long admits that it is hard for parents to talk “about their children in part because they fall victim to self-stigmatization. They are more than willing to blame themselves, and society at large is happy to reinforce the message.”3

Another mother named Ruth participated in the interviews I conducted. Ruth’s daughter has been diagnosed with Tourette’s syndrome. Her tics involve blurting out cusswords at unpredictable times, regardless of the social setting. Ruth admits, “All kinds of things come out of her mouth, and it makes me uncomfortable. When I found out that there was medication available to mask the tics, I wanted it because it could save some social embarrassment. It is more than that,” she observes. The medications “actually allow her to manage interactions in the world in a more regular way.” At the same time, Ruth expresses a sense of guilt about wanting her daughter to take the medication, but she is concerned about whether her daughter will be accepted in different social environments. The stigma and shame associated with mental illness and neurodevelopmental disorders and the social pressure to live up to expectations to be the “good” and “ideal” parent and family or high-achieving kid lead to the concealment of many of the real issues families face on a daily basis.

Scientific investigations of public attitudes toward mental illness began in the United States in the 1940s and 1950s as part of the mental health and deinstitutionalization movement. The intention of these early studies was to try to understand the stigma surrounding psychiatric disability and the significant burden placed on their families so that people with mental illness could return to their homes and communities with the support they needed when released from state hospitals. In 1950, Shirley Star, a senior study director at the National Opinion Research Center, conducted the first nationwide research regarding the public’s perception of mental illness. Star and her team conducted 3,500 interviews that incorporated vignettes describing conditions such as anxiety, schizophrenia, alcoholism, juvenile character disorder, and compulsive phobia. The research findings revealed that the public had little understanding of the enormity of the problem and exposed the “view of human nature and of human conduct deeply engrained in Western civilization.”4

In her 1955 summary of the findings, Star identified the stigma associated with mental illness: “Given this orientation, it also follows that mental illness is a very threatening fearful thing and not an idea to be entertained lightly about anyone. Emotionally, it represents to people loss of what they consider to be the distinctively human qualities of rationality and free will, and there is a kind of horror in dehumanization. As both our data and other studies make clear, mental illness is something that people want to keep as far from themselves as possible.”5 The majority of those interviewed by Star and her team looked to psychiatric and medical professionals for a cure and believed that people with serious mental illness were best treated in psychiatric hospitals.

Stigma is a term derived from a Greek word that refers to a mark made by a pointed instrument or brand. In the ancient world, stigmas were visible signs of social disgrace used to highlight something unusual or bad about a person, lapses in their moral character, or their social status. Psychologist Stephen Hinshaw observes that “the very creation of a social fabric within a community emanates in part from the boundaries that separate acceptable from unacceptable attributes, traits, and behaviors—in other words in-groups from outgroups.”6 The construct of disability and the stigma associated with mental illness emerge out of a larger fabric of social relationships that can connect or separate people with physical or cognitive impairments to or from those who are considered able-bodied and able-minded. Those relationships can function to privilege some at the expense of the exclusion and disadvantage of others.

Researchers have repeatedly shown since the early studies of the 1940s and 1950s that mental illness is “the most disturbing type of disability-related condition for the general public.”7 When a person is stigmatized by a disability, groups in positions of social power create boundaries to “exclude the ‘infectiousness’ of perceived stigma.”8 For example, insane, moron, crazy, retard, feeble-minded, and lunatic were once medical terms used to diagnose intellectual and developmental disabilities and serious mental illnesses. Today, we recognize how these words represent social attitudes toward people with mental impairments and intend to distance them from their “able-minded” peers. Another contemporary example of this is the symbol used to designate “handicap” parking, which creates a visible image that associates disability with limitations of physical mobility and the use of a wheelchair. Most of these types of labels and images urge us to reduce a person with disabilities to their “broken part.”

Chapters 1 and 2 of this book explore the stigma associated with serious mental illness in the US context and share stories from the perspectives of individuals with serious mental illness and their parents and siblings. My intention in presenting these stories is to better understand the experience of stigma shared by these individuals and families and how boundaries that separate acceptable from unacceptable attributes, traits, and behaviors unravel the social fabric of care.

Most of the comments incorporated in these chapters were made by siblings growing up in families affected by serious mental illness whom I interviewed between June 2019 and August 2020. Their accounts represent the experiences of more than twenty families. You can find the questions asked during the interviews in the “Additional Resources” section at the end of this book. Some additional quotations are gleaned from parents who participated in the interviews because their children were under the age of eighteen and are taken from other sources, including journals and magazines, newspaper articles, blogs, and books.

The siblings whom I interviewed were all volunteers and responded to several invitations I made and posted on social media or after being encouraged to participate by friends or colleagues. Their identities are kept confidential here. All names have been changed to protect the identities of the participants and their family members. On occasion, I have changed the details of their stories in order to ensure confidentiality. The majority of siblings whom I interviewed identify as white. Fewer participants identify as Black or Asian. Most also identify as female. These siblings live primarily in the United States and represent northeastern, southeastern, midwestern, and western regions. They come from both urban and rural areas. A few of the interviewees are from Europe. The participants span three generations and range in age from eleven to over sixty.

In addition to including the testimonies of siblings, one thing that makes my exploration of these stories distinct when compared to studies done in psychology or the social sciences is that I also consider how Christian beliefs, doctrine, and practices play powerful roles in shaping our concepts of the “good” family, mental and physical health, and dutiful love and charity and informing stigma. Our religious identities are woven together with race, ethnicity, and social class as well as larger cultural values of individualism, independence, and self-control. I mentioned earlier that sharing stories of individuals and families affected by serious mental illness is a perilous venture because vulnerable people take on what may feel like an unreasonable risk. I also think it is important to observe that the way disability is presented by parents and siblings will often fail to challenge and push beyond the social constructions of normal and healthy as able-bodied and disabled as abnormal, even though the desire to do so is clear in their testimonies. I attribute this to the fact that most of the siblings whom I interviewed live in the present moment because of the immediacy of providing for basic needs. So their narratives will do more to highlight systemic failures, stigma, and stereotypes. However, unraveling the attitudes, concepts, beliefs, rituals, and practices that stigmatize and shame is essential to spinning the new threads needed to weave a social fabric of empowerment for people with serious mental illness and their families.

Labeling

The American Psychiatric Association (APA) published the first edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM) in 1952, around the same time that the first nationwide studies of stigma were being conducted. Mental health professionals created the DSM after World War II largely because the Department of Veterans Affairs needed a common way to address the mental health issues that returning soldiers were facing. The manual relied on symptoms to develop a common language for diagnosing and naming behaviors considered aberrant as well as identifying intellectual disabilities. Prior to World War II and the DSM’s publication, teaching centers across the United States designed their own systems and ways of naming mental illnesses, using terms such as idiocy/insanity, mania, melancholia, monomania, paresis, dementia, dipsomania, and epilepsy. Now in its fifth edition (DSM-5), the DSM is sometimes referred to as “the therapist’s bible.” Diagnoses are helpful in identifying approaches to treatment, especially when they enable individuals to gain control over their own circumstances. However, many raise questions about the harmful effects of labeling human characteristics as aberrant and deviant and the tendency to reduce a person’s identity to a diagnosis. As a parent, Liza Long describes the DSM as “the equivalent of a crude hand ax trying to do a laser cutter’s precision work.”9

Labels become the means to mark and define difference and norm-defying behaviors but also connect to a particular understanding of ideal human nature and social power and views of right and wrong, healthy and sick. Developing a common way of naming various forms of mental disorders is not completely objective and colors the lens through which society views certain behaviors as nonnormative. This naming also plays a role in stigmatizing some of the natural tendencies and characteristics of people. The definitions can contribute to the disablement of people with serious mental illness because they move certain behaviors out of the “realm of cultural or moral standards and into the scientific domain of disease states.”10 When the DSM-5 was published, the British Psychology Society wrote to the APA with this complaint: “Clients and the general public are negatively affected by the continued and continuous medicalization of their natural and normal responses to their experiences.”11 In this case, the medicalization of serious mental illness can overstep its limits.

Scholars in the field of disability studies challenge us to think beyond medical and social-scientific concepts of and approaches to disability. Disability studies is part of a larger political movement that claims disability as a positive social value and affirms the right of people with disabilities to name their own identities and define their experiences. These scholars and activists assert that the concept of disability itself is a stereotype largely mediated by medicine, psychology, and pharmacology.12 The medical model focuses a microscope on bodily “abnormalities.” Douglas Baynton, Lennard Davis, Jay Timothy Dolmage, Margaret Price, Rosemarie Garland Thomson, and others challenge us to affirm people with disabilities as meaning makers and agents of change. The concept of disability often assumes that there is a common identity that people with physical and mental impairments share. However, stigma is the primary common ground shared by people with very diverse experiences of disability.

Stereotypes Reduce Complex Human Identities to a Disability

Pernicious stereotypes of people with various disabilities mark them as incompetent, weak, and perpetually childlike, even in adulthood, and reduce disability “to a mere state of impairment or . . . disqualifying defect, retributive punishment, threat, contagion, torment or senseless fate.”13 In addition, the majority of US Americans associate mental illness with violence. These stereotypes place a great deal of pressure on people with disabilities. They impact their interactions with key power groups such as teachers, landlords, employers, police, clergy, church members, and mental and physical health providers. Stereotyping can prevent them from fully participating and flourishing in their communities and achieving important life goals.

Moreover, studies show that race, ethnicity, gender, and social class compound the experience of disability. Researchers use the term double burden to describe being a member of a racial ethnic minority group and having a physical or mental impairment. Data made available after the passage of the Patient Protection and Affordable Care Act reveals that “members of racial and ethnic minority groups who have a disability face greater health disparities and inequalities than do their peers without a disability.” People of color “with both mobility limitations and minority status experienced worsening health, more difficulty with activities of daily living, depressive symptoms, diabetes, stroke, visual impairment, obesity, low participation in physical activity, and low workforce participation.”14 Being minoritized and devalued because of your race or ethnicity can also adversely affect your mental health.

One of the most powerful stories I have heard about stigma was told by a young woman who participated in the Valparaiso Project at St. Andrews Presbyterian College. The Valparaiso Project was a yearlong study designed to provide students at the college with an opportunity to study Christian practices from the perspective of people with physical and learning disabilities. At the end of the study, the students who took part decided that they wanted to produce a video that incorporated interviews of other students with disabilities across the campus who also talked about their experience...

Table of contents

• Cover
• Title Page
• Copyright Page
• Dedication
• Contents
• Foreword
• Acknowledgments
• Introduction
• Part I: Heading into Households and Crawl Spaces
• Part II: History and Current Circumstances
• Part III: Empowerment, Alternatives, and Advocacy
• Additional Resources
• Notes
• Suggested Readings
• Index