Self-determination and safety: an ethical crossroad

Author: Widian Nicola1
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  • 1 Seton Hall University, , USA
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Self-determination is a pathway by which individuals can safeguard as well as define their sense of safety. However, when an individual’s sense of safety is placed at risk, particularly within the context of community, safety can become illusive. Due to safety’s subjective nature, social workers and healthcare providers are invited to examine closely the roles they play to uphold a client’s self-determination, as well as manage risk as instruments of the healthcare programmes we represent, within the context of community and amid our clients’ challenging and oftentimes complex life circumstances. These ethical junctures offer practitioners an opportunity to examine how personal and collective ethical decisions are made, particularly through the lens of the ethics of care, which aims to place relationality at the forefront of the decision-making process. This clinical ethnographic narrative examines several ethical junctures I faced as the social worker to an elderly client diagnosed with schizophrenia.

Abstract

Self-determination is a pathway by which individuals can safeguard as well as define their sense of safety. However, when an individual’s sense of safety is placed at risk, particularly within the context of community, safety can become illusive. Due to safety’s subjective nature, social workers and healthcare providers are invited to examine closely the roles they play to uphold a client’s self-determination, as well as manage risk as instruments of the healthcare programmes we represent, within the context of community and amid our clients’ challenging and oftentimes complex life circumstances. These ethical junctures offer practitioners an opportunity to examine how personal and collective ethical decisions are made, particularly through the lens of the ethics of care, which aims to place relationality at the forefront of the decision-making process. This clinical ethnographic narrative examines several ethical junctures I faced as the social worker to an elderly client diagnosed with schizophrenia.

Introduction

Resilience is a cumulative human process sharpened by a lifetime of adaptation to difficult life circumstances and outcomes of voluntary or involuntary decisions. Self-determination is the vehicle whereby resiliency can fully express itself. At its core, self-determination theory (SDT) is concerned with human motivation, the effects of goal pursuit and attainment that concerns ‘the degree to which people are able to satisfy their basic psychological needs as they pursue and attain their valued outcomes’ (Deci and Ryan, 2000b: 227). Social psychologists Edward Deci and Richard Ryan (2000a), whose research expanded on the notions of intrinsic and extrinsic motivation, proposed that conditions that support an individual’s experience of autonomy, competence and relatedness arguably foster the most volitional forms of high-quality motivation and engagement within individuals, which leads individuals to achieve greater levels of their human potential. In other words, a supportive environment that includes access to both human and capital resources, unlocks an individual’s intrinsic motivation, and thus promotes engagement, persistence, performance and creativity will lead to a higher quality of life, well-being and satisfaction. When an individual’s needs are met within a supportive environment, they have the ability to make autonomous choices, thus affirming the presumptions that humans are inherently and naturally evolved to be curious and engaged relational beings (Ainsworth, 2014).

SDT also recognises that a social environment that meets a person’s three basic psychological needs – the needs for competence, autonomy and relatedness – contributes to an individual’s ability to survive, and ultimately thrive and lead a socially active, engaged life. Due to conditions that undermine an individual’s self-determination, such as a lack of resources or stigma related to mental health and psychiatric labels, social workers and healthcare providers are tasked with fostering supportive environments such that individuals can answer the call towards full engagement and fulfilment. However, when an individual’s mental health symptoms create conditions or circumstances that undermine their own safety and well-being, the pursuit to support the individual may seem aimless. Given the many instances whereby social workers and healthcare providers encounter decision-making occasions that meet at the intersection of risk tolerance and a client’s self-determination, especially when risk is involved, this task is not easy, nor is it simple. This challenge, however, invites us to examine closely our roles as social workers, particularly within the context of community and especially along with our clients’ phenomenological experiences in challenging and oftentimes complex life circumstances.

The principle of self-determination

The principle of self-determination, theoretically and philosophically speaking, has engendered much contention given its definition and implications. Particularly for individuals with severe disabilities, both mental and physical, measuring and asserting one’s self-determination may be limited, if not impossible. Jack Rothman (1989: 598) notes that ‘Client self-determination may be the most confounding and professionally debilitating concept of all the intellectual principles undergirding social work’, and that ‘while self-determination is accorded utmost esteem by the profession, its meaning and application are clouded’. Beyond social work, other professions have adopted the term, and ambiguity has resided there too. For example, Michael Wehmeyer (2004: 337), Professor of Special Education at the University of Kansas, notes that ‘the term has become laden with multiple meanings and intents that have resulted in confusion and misunderstandings’. As ‘you cannot physically measure self-determination’, Wehmeyer (2005: 114) claims, ‘it is a heuristic intended to assist in explaining and predicting human behavior or in explaining a state of being characterized by freedom and self-governance in the collective usage’. Yet, given the principle’s seeming ambiguity, its comprehensive philosophical history offers a starting point from which we can begin to conceptualise its meaning and concrete implications in practice. Likewise, we can begin to understand the principle in light of the ethical codes we have adopted that have attempted to maintain the principle’s definition, which have proven the concept to be less ambiguous than claimed. Ultimately, this historical journey places us in the current context from where we can begin to highlight the principle’s limitations, particularly for individuals with severe disabilities, and the ways in which our work can move us beyond those limitations.

In his 1859 book On liberty, John Stuart Mills claims that ‘an individual cannot rightfully be compelled to do or forebear because it will be better for him to do so’; rather, ‘over himself, over his own body and mind, the individual is sovereign’ (quoted in Macioce, 2012: 102). This sovereignty supposes that individuals have the freedom to determine all the choices given to them. Self-determination, then, can be defined as an individual’s freedom and power to choose and determine what is in their best interest (Cook and Jonikas, 2002). The implications of one’s decisions, however, may (and, in many instances, do) undermine an individual’s health and well-being, particularly in the cases of individuals who may have cognitive impairment (that is, those with dementia or severe and un-medicated mental health symptoms). This is the crossroads whereby healthcare professionals, specifically in the field of social work, encounter ethical dilemmas regarding the care of clients.

These ethical junctures expose the tension between upholding a client’s self-determination and the role of the social worker to ensure that a client is safe, especially within the community. Thus, an individual’s need to determine what is in their best interest must be significantly oriented within the context of a community (Cook and Jonikas, 2002). The strain of protecting a client’s rights within a community has been a point of contention in the mental health field for years. Given the cultural stigmas attached to psychiatric labels, various groups have made attempts to assert the need to uphold individual rights over external ‘oppressive’ claims that those with mental health diagnoses are unstable and incapable of making self-determined and safe decisions, thus endangering the community (Cook and Jonikas, 2002). This occasion, nevertheless, has also become an opportunity for practitioners to trust in the capacity of the individual, value their unique perspective and, most importantly, honour an individual’s history and reality, even and especially within a community, whereby the community can become an asset instead of a liability.

Context

Ms Mazzy came to our agency three years prior to my meeting her through a referral from a local social service organisation as they were eager to find comprehensive services for her. At that time, she had received substance abuse and mental health counselling in a programme that she had attended for almost a year. With a history of substance abuse, and convinced that she had nine children, 64-year-old Ms Mazzy required help beyond outpatient mental health counselling. She had been formally diagnosed with paranoid schizophrenia several years prior and vascular dementia more recently.

Ms Mazzy was an eccentric woman who spoke with a slightly high-pitched voice and, although incoherently, with confidence. She stood 5 ft 10 in tall, was slender and had black hair with a sprinkle of grey that stood high naturally. She had a pleasant demeanour. Somewhat shy, she often chose to be alone to colour and work on her arts and crafts projects. She also knitted. Her voice was easily recognisable to anyone who knew her. She was well known to be a wanderer and a nomad, with a mission to go where she wanted, at her own pace, in her own time and by her own unique means. I cannot remember the first time I met Ms Mazzy, but I do remember the many conversations that my co-workers and I had prior to my first formal meeting with her and my eventual assignment as her social worker. I heard the words “You’re going to love her” more times than I can count. And I did love her. Despite her frequent nonsensical conversations, it was hard not to deeply care for her.

In the several months after she enrolled in our programme, she lived with her daughter, Andrea, as she had most of her life, and her refusal to take her prescribed psychiatric medications had placed her in serious danger, including an incident in which she was found walking on the highway. She was hospitalised a number of times, and after each stabilisation in the psychiatric unit at the local hospital, she was discharged back to her home. Although Andrea made attempts to offer adequate caregiving, which meant administering her daily medications and ensuring she was home every night, Ms Mazzy lived in a rented townhouse that, at the time, was dirty and in deplorable condition. With a non-functioning kitchen sink and stove, along with broken floorboards and clutter that made walking difficult, it was located in the inner city, an area known for gang activity.

The effort that Andrea made to provide proper care for her mother proved to be minimal. As a result, after the aforementioned highway-walking incident and two additional emergency room (ER) visits related to Ms Mazzy’s wandering, Andrea was agreeable to a long-term care placement for Ms Mazzy, with hopes of finding suitable housing for her so she could return home. While in the long-term care facility, Ms Mazzy’s delusional and paranoid thoughts lessened, which was primarily attributable to her taking her medication as prescribed. Yet, while Ms Mazzy was more stable and safe, having been placed on the dementia unit to keep her from wandering, she successfully destroyed the tracking device worn around her wrist (called a wander guard). She was found wandering down the street several miles from the facility. Although her wandering was a clear message of her desire to return home, to others, it was a message of her inability to comprehend the risk she had placed herself in, and therefore signified incompetence and a lack of decision-making capacity. As a result, our team discussed the many potential outcomes of Ms Mazzy’s return home, including the risks to her safety caused by her wandering and the likelihood of eventual hospitalisations should she stop taking her medications. There was disagreement among team members; while some team members expressed displeasure with the prospect of Ms Mazzy’s return home and potential risk, others expressed regard for Ms Mazzy’s self-determination and autonomy to return home to live with her daughter.

The challenges I faced in my attempts to sit quasi-comfortably in the tension between the two ideals (protecting my client’s self-determination and reasonably protecting her against self-harm) gave expression to the complicated nature of the human experience, as well as considerations of how theories about self-determination inform practice and, likewise, how practice informs the theoretical frameworks I adopted in my practice. In other words, this case provoked larger conversations regarding ethics and the ethical decision-making process that informed my work.

The necessity of understanding our clients’ messages

Messages are difficult to decipher when they appear nonsensical, let alone the ability to make meaning of them. “I’ve been sick for a while now, you know”, Ms Mazzy would say:

‘I have that problem with my lungs. I got the pneumonia, and now it’s clearing up. Back when my boy was born in 1963, he helped me because my daughter is a doctor, born in 1963. I had it all my life. It’s a leaky heart so I have to go to the hospital and stay there until I’m better.’

During extended conversations, her inflections varied and her tone and pitch were incongruent with the content of her words. Her daughter was not a doctor, and she did not have pneumonia. Much of what Ms Mazzy said did not make sense and may have, to the common English speaker, seemed meaningless. As a result, my relationship with Ms Mazzy became the doorway to finding meaning in her words. Especially in the midst of panic about where to place Ms Mazzy, this meaning-finding process became evidently more important.

While assumptions about the intelligibility of delusions among those with schizophrenia are prevalent, researchers are divided about their meaningfulness. Arguments regarding the meaningfulness have left some to believe ‘clinical delusions (or at least a subset of them) to be without meaning for their possessor, and thus incomprehensible to the observer. Others would find, or attribute, meaning, even in delusions that are seemingly unintelligible’ (Radden, 2011: 58). In this case, Ms Mazzy’s historically articulated delusions about her countless children, her daughter’s profession and her physical health, although nonsensical and factually incorrect, were typically thematically delineated. From this, one could attempt to interpret the meaning of Ms Mazzy’s words. Yet, while she spoke English, she nonetheless seemed to speak a different language.

The task of expressing any emotion, desire or need is a great challenge even to the common individual, let alone to a person with schizophrenia. The use of language to articulate the lived experience of those living with schizophrenia has proven to be a challenge. While some phenomenologists, like Karl Jaspers, argue that the experience cannot be understood (see Radden, 2011), others, like Louis Sass, have made attempts to capture schizophrenia on its subjective or lived dimension, claiming that its understanding can be achieved (Sass and Pienkos, 2013). As philosopher Jennifer Radden (2011: 48) states: ‘subjective descriptions of both delusions and hallucinations are regularly accompanied by elaborate qualifications that echo these uncertainties over how to capture and represent such experiences’. Thus, while it can become seductive to try to find meaning in Ms Mazzy’s words given the subjectivity of language, it was her actions that reflected a larger life-theme and provided meaning that would act as the guide in my work with her. In other words, her elopements and efforts to return home to her daughter were her message. Ultimately, this begged for a response from those of us standing at the ethical crossroad determined to protect her from losing her self-determination and the harmful circumstances she had placed herself in.

By her lived experience and by virtue of my being a witness to them, I was not only Ms Mazzy’s social worker, but also became overwhelmingly responsible to respond fittingly. However, even in my attempts to respond with care and concern, I found myself challenged to balance her need for autonomy with her need for safety. While I celebrated Ms Mazzy’s courage to seek her own path in her own way, it also made sense for her to remain in a place, where she would be supervised in order to remain safe. “We can’t take the risk of her wandering out of the building unsupervised. We have to think about our liability”, we were eventually told by the facility from where she had eloped.

Defining safety

Safety, or ontological security, can be defined as the absence of fear, freedom and protection from harm, and acceptance of what is with a sense of order and stability in regard to an individual’s experiences. However, like death knocking on one’s door, which causes people to ‘question the meaningfulness and reality of the social frameworks in which they participate, shattering their ontological security’ (Mellor and Shilling, 1993: 13), our sense of safety is placed at risk given our relational nature. Within this relational context, questions of safety frequently arise. Thus, ‘risk’, ‘danger’ and ‘threat’ can be subjective terms, and defining what safety looks like can become a crossroads filled with contention. As a result, self-determination becomes the pathway towards safety and the means by which individuals and communities act to preserve personal and collective ontological security.

SDT places individuals within a community context. It adopts the philosophical assumption that human beings have an inherent propensity for growth and development, which is optimised within those supportive communities (Deci and Vansteenkiste, 2004: 24). The principle arises from the consideration that we are not just simply free to make decisions based on our preferences as those decisions must not harm others. Given the boundaries of the principle, albeit debatable, the question raised is what to do when community members are at odds with one another due to threats of safety (real or in principle) such that those living within the community are placed at risk. Proponents of more conservative boundaries of self-determination argue that it is ‘not very compatible with the requirements of order and integration typical of modern societies’ (Macioce, 2012: 2), which aim to protect the people. Equally, the incompatibility gives rise to bigger questions about the limitless nature of individual liberty. In other words, subjective autonomy must have boundaries.

Not surprisingly, Ms Mazzy’s self-determination and subjective autonomy were perceived to be at odds with that of the community she found herself in and, on some level, created a form of social disorder. As philosopher Fabio Macioce (2012: 100) declares, self-determination ‘is based on a formal and individualistic view of liberty rights. This perspective, however, is inconsistent with the needs of a community, and particularly with the necessity to promote a relatively stable social order, and an integration between subjects’. Macioce (2012: 100) argues that social order is designed to offer stability and integration between people, which ‘balances the existential uncertainty with the need of certainty in relations’ and ‘is what makes the difference between a mass and a community’. Likewise, within a community context, this leads to a debate on the primacy of values such that ‘relationships may call for values of an order higher than self-determination’, as Rothman (1989: 605) notes. Ultimately, Macioce (2012: 115) purports, ‘community members are bound together by something deeper than “mere coordination,” but united by “existential choices compatible one to the other”’. Given Ms Mazzy’s history of psychiatric hospitalisations and wandering, the counterbalance of autonomy and personal responsibility had to be equalised such that they were compatible with the community’s.

In the case of the elderly, those with mental illness and those from other vulnerable populations, this balance is difficult to find. The opinions expressed by philosophers on liberty, legal considerations about guardianship and competency by attorneys, and professional opinions about mental and decision-making capacity by physicians have become a muddled ethical debate. Hence, the tensions in the provision of care lie in the grey area, which is where our team sat relatively uncomfortably time and time again.

The values clash: moving beyond our binary perspective

While the clash between self-determination and safety has generated much debate in modern medicine, ‘the core of the controversy derives from the different values that different persons assign to protecting individuals’ wellbeing as against respecting their self-determination’, as Steinbock, London and Arras (2013: 337) contend in Ethical issues in modern medicine. As stated by Frederic Reamer (2014: 164), ‘ethical dilemmas entail far more than exploration of the profession’s and practitioners’ values; they involve complex analysis of ethical puzzles where social work’s values, duties, and obligations conflict’, which ‘requires the application of ethical theory that was the province of moral philosophy’. In his ‘Evolution of social work ethics: bearing witness’, Reamer highlights the key stages of the evolution of social work values and ethics, each of which is a response to contextual considerations, such as the ‘morality period’ in the late 19th century, whereby ‘responding to the “curse of pauperism” were the profession’s principle missions’, and thus ‘this preoccupation often took the form of paternalistic attempts to strengthen the morality or rectitude of the poor whose “wayward” lives had gotten the best of them’ (Reamer, 2014: 166). Likewise, in the mid- to late 1970s, in which ‘controversial technological developments in health care and other fields certainly helped to spark ethical debate involving such issues as termination of life support, organ transplantation, genetic engineering, psychopharmacological intervention, and test-tube babies’ (Reamer, 2014: 168). Ultimately, throughout its evolution, ethics has been viewed through a deontological lens: right versus wrong, one value versus another value, safety versus self-determination and liability versus risk tolerance. It is also a lens that has proven to be narrow and inadequate in addressing the complexity of human experience.

Is it possible, then, to re-conceptualise this binary view? Given the fact that there ‘is no uniquely “correct” answer to the relative weight that should be assigned to these two values’ (Steinbock et al, 2013: 337), our ethical decision-making journey must move beyond deontological and rationalist deductions. Likewise, it must move beyond the codes of ethics that have characterised our social work profession to a focus on relationality instead. This path, or ethic of care, faces ethical junctures through a distinctive lens that is less absorbed by codes and more motivated by relationality. By way of this paradigm shift in ethical decision-making, the social work profession and all healthcare professions can bridge the gap caused by the inadequacy of a deontological ethical decision-making construct, and ultimately help facilitate a journey of wandering that ends in safety.

A new approach through an ethic of care

Resilience is commonly associated with risks to human development and protective factors or vulnerabilities that ‘influence [a person’s] ability to positively negotiate these adversities’, and challenges the subjective definitions of risk, which can also be seen as a relative phenomenon (Wild et al, 2011). In this subjectivity, what is considered to be a risk for some may be harmless for others, and could even be an asset to particular individuals or communities. Consequently, ‘safety’ and ‘risk’ become terms that parallel the lived human experience. As life is messy and, at times, uncertain, safety within parameters is difficult to define, let alone articulate. Narrative, then, becomes a powerful means by which practitioners can form relationships with those whom they serve, as well as honour a client’s definition of safety.

We do not have the details of Ms Mazzy’s comprehensive life experiences. Healthcare providers rarely have access to those details. Given what I had gathered over the course of my work with Ms Mazzy, coupled with the knowledge that there is no clear answer of what is ‘right’ or what is ‘best’, I came to find that the only certainty there is in social work is that we must question, be curious and remain flexible in a world that is marred by uncertainty. While our work beckons us to move towards peace, justice, equality and love, which are revealed through compassion and empathy, it is important to remember that our clients are the authors and experts of their lives, and that we are their companions on a journey. Our own self-reflexivity, listening to and, later, listening for our clients, begins with compassion and ends in conscious action. Instead of approaching the decision-making process as a scientific formula, we must become comfortable in wandering through the journey without the pressure to define ‘rightness’ within a moral debate. As Reamer (2014: 169) contends: ‘Although for some time, particularly since the 1930’s, science has been placed on a pedestal and widely regarded as the key to many of life’s mysteries … modern-day professionals acknowledge that science cannot answer a variety of questions that are, fundamentally, ethical in nature.’ Beginning with and eventually embodying this truth makes it possible for us to form relationships with our clients such that we can empathise with their needs.

Nel Noddings (2012: 53), best known for her widespread contributions to the ethics of care, asserts that the ‘ethics of care begins its thinking – as life itself begins – in relations’. This ethics of care, in which interest has grown rapidly since its inception in the early 1980s, focuses on the encounter between the ‘carer’ and the ‘cared-for’ as a reciprocal and non-obligatory ‘natural’ relationship, as opposed to that of traditional ethical theories, which usually elevate principled moral thinking about love and inclination and above ‘natural caring’ (Noddings, 2012: 54). This reciprocity, therefore, would place the relationship with Ms Mazzy and her daughter at the forefront of the decision-making process. As Noddings (2012: 54) claims: ‘Caring often requires highly sophisticated reasoning … but it depends more fundamentally on emotion for its motivation, on empathy or sympathy that presses us to responds as carers to others.’ ‘Care is both a value and a practice’, Held (2006: 42) contends, and concerns itself with ‘caring relations’ as the ‘primary value’ (Held, 2006: 19). However, because of the potential for an imbalance of power between our clients (viewed as weak or powerless) and us as ‘carer’ (paternalistic), a compassionate care response that is attentive and mutual has the potential to reorder the imbalance. These reciprocal relationships, then, would allow us to go beyond our biases, stigmas and fears such that we can find interdependent safety.

The relationships I formed with both Andrea and Ms Mazzy opened me up to my own journey towards safety: two family member deportations; thousands of dollars invested in attorney’s fees in what appeared to be the endless pursuit of a self-determined life in the US as an undocumented immigrant; miles of separation; years of terror knocking at my family’s door; and nearly 29 years of wandering towards a destination. My journey towards safety in the midst of fear of deportation and separation from my family is not too different from that of Ms Mazzy and Andrea. There are no easy answers in social work, especially as we come to understand our own personal fears and struggles. Ultimately, to acknowledge our clients’ individual unique qualities, narratives and desires, as well as their needs, is to safeguard them, even and especially if their choices differ from that of our own.

Narrative as relational tool

Narratives cannot exist outside the context of relationships. In fact, to the hearer (Jurecic, 2012), narratives provide privileged access to the ‘subjective experience’ of illness (Woods, 2014). Thus, relationality is the vital factor in narrative. It is through relationships that individuals can share narrative, and ultimately, cooperatively and communally, co-create an even larger collective narrative. SDT holds that relatedness and autonomy are interrelated, and further makes the claim that they are not mutually exclusive. As our existence by virtue of our lived human experience has a claim on our need for others, the narrative of one becomes the narrative of all. This human connectedness beckons us, through the sharing of narrative, to not only listen ‘to’, but also listen ‘for’ the sake of, those whom we serve. As we are told as young social workers: ‘First, there is no such thing as a self-made man or woman; no person stands alone in the world. Second, because human beings are in constant relationship, we are influenced by and reliant on others’ (Longhofer et al, 2010: 15). Therefore, we are not merely separate beings walking alone, but rather extensions and companions on the same journey to care and connection.

Ms Mazzy’s ontological security by means of self-determination invited an even greater sense of this social and communal connection, and, in many instances, a social responsibility to all vulnerable members of our community. As the concept of self-determination ‘rests on a problematic foundation of total individualism, implying that individuals, or even groups of individuals, can be removed from their complex social context’, it is vital to recognise that as social beings, we are inextricably linked to one another, through our actions and inactions (Cook and Jonikas, 2002: 320). Thus, the concept of ‘social self-determination’ recognises that while individuals are autonomous, they do not live within a closed system and thereby contribute to and receive from others. This paradigm shift leads to equality, opportunity and care, and moves us towards authentic, profound safety for our clients, our communities and the world.

Finally, it is our deeply rooted internalised experience of interconnectedness that liberates us to recognise the uniqueness of our clients, even and especially when their defined quality of life differs from our own. Most importantly, it helps us to recognise the personal and communal stigmas we hold that may hinder our interconnectedness. As stigma can, and often does, inhibit individuals with mental illness from receiving the services they need, as well as their ability to be taken seriously, the challenge – recognising the limited decision-making capacity of individuals with severe and un-medicated mental health symptoms and upholding their inherent dignity to autonomous, creative and self-determined lives – becomes an invitation to action. SDT proposes that individuals can ‘function better, be more stress resilient, and report fewer psychological difficulties when they experience others standing behind them with love and affection’ (Kasser and Ryan, 1999: 939). Thus, the call for clinicians as companions on the cooperative journey towards upholding clients’ inherent dignity and safety it to recognise the stigmatised views held of those whom we serve, which may ironically be a risk factor in and of itself to our clients’ well-being.

While ‘people find it difficult to accept behavior that is so different from the norm’, such that bizarre behaviours manifest by those with mental illness may become ‘too frightening to accept or acknowledge’ (Dubin and Fink, 1992: 1), recognition of the reasons for the stigma is not enough. Psychologist Dr Mary Gullekson writes of the stigma she experienced as an eight-year-old whose 12-year-old brother was diagnosed with paranoid schizophrenia:

For me stigma means fear, resulting in lack of confidence. Stigma is loss, resulting in unresolved mourning issues. Stigma is not having access to resources, resulting in lack of useful coping skills. Stigma is being invisible or being reviled, resulting in conflicts regarding being seen. Stigma is lowered family esteem and intense shame, resulting in decreased self-worth. Stigma is secrecy, resulting in lack of understanding. Stigma is judgment, resulting in lack of spontaneity. Stigma is divisive, resulting in distrust of others. Stigma is anger, resulting in distance. Most importantly, stigma is hopelessness, resulting in helplessness. This all adds up to decreased potential, of self and others. (Quoted in Dubin and Fink, 1992: 12)

The hopelessness that results in helplessness can become a catalyst of change. By virtue of the title, social workers are tasked with moderating paradigm shifts necessary to bring healing to clients and communities. Once realised, the stories of those whom we serve become revolutionary means by which stigma can be deafened.

Conclusion

As clinicians, case managers, administrators, grant writers, school counsellors and lobbyists, it is a moral imperative that we protect the vulnerable through listening. When we can pause, we will hear our clients. Their actions speak. Their words convey a message. They tell us what they define as their quality of life, who they want to live with, their end-of-life wishes, fears and insecurities, longing for companionship, experiences of grief and loss, and, ultimately, what they want. They also teach us how to trust because ‘it is in the risk taking that we all experience all there is to being human – the bumps and bruises and the happiness and joys’ (Burns-Lynch, 2010: 7). Listening to Andrea and Ms Mazzy’s narrative helped build a foundation of trust that established safety. It was not her ‘mental illness’ label or ‘incapacity to make decisions’, or even that she was ‘demented’, that ensured her safety. Rather, it was recognition of her personhood and that her life was defined by her lived experience and not her incapacities that established Ms Mazzy’s safety. In the end, listening allowed her voice to be heard such that her life of wandering, aimless or otherwise, exemplified the intersubjective experience. To foster the inclusion of multiple perspectives and mutual understanding, and to recognise the inherent resilient qualities in any of our clients, is to succeed.

Success in our work cannot always be quantified or measured. In order for us to evolve, we are invited to recognise that, ultimately, power and truth rests in the hands of those whom we serve, not in the number of anxious clients we have medicated. Success is finding safety in the fact that our clients are the authors of their lives: delusional, vulnerable, elderly, impoverished, uneducated, young, depressed, ill or demented. They are our best teachers. This compassion or caring ‘or any other virtuous attitude does not happen automatically. It is not a natural human response, but a learned and inculcated moral attitude gained through socialization’, and requires attentiveness and intentional reflection on our role as social workers (Gray, 2010: 1807). In the end, as social workers and healthcare providers, we are not immune to embodied experiences of mutual conversation and conversion. In fact, as extensions of one another, we are beckoned to a collective redemption whereby our compassionate action can and does reconcile us to those whom we serve. Our wandering towards what is best for our clients parallels the lived experience of those whom we serve, which leads us to ask what we can offer our clients to ensure their well-being rather than make attempts to quantify risk. Thus emerges the challenge not as a defensive reactor, but a revolutionary rejoinder that dares us to act through compassion and care.

Acknowledgements

Thank you to Miriam Jaffe and Tom Bartolomei for your ceaseless encouragement and support, as well as to Jerry Floersch and Jeff Longhofer, whose vision for the case study has changed the world.

Conflict of interest

The author declares that there is no conflict of interest.

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  • Held, V. (2006) The Ethics of Care, New York, NY: Oxford University Press.

  • Jurecic, A. (2012) Illness as Narrative, Pittsburgh, PA: University of Pittsburgh Press.

  • Kasser, V.G. and Ryan, R.M. (1999) The relation of psychological needs for autonomy and relatedness to vitality, well-being, and mortality in a nursing home, Journal of Applied Social Psychology, 29(5): 93554. doi: 10.1111/j.1559-1816.1999.tb00133.x

    • Search Google Scholar
    • Export Citation
  • Longhofer, J., Kubek, P.M. and Floersch, J. (2010) On Being and Having a Case Manager: A Relational Approach to Recovery in Mental Health, New York, NY: Columbia University Press.

    • Search Google Scholar
    • Export Citation
  • Macioce, F. (2012) What can we do? A philosophical analysis on rights and self-determination, Universidad del Norte, Journal of Philosophy, 6: 10029.

    • Search Google Scholar
    • Export Citation
  • Mellor, P. and Shilling, C. (1993) Modernity, self-identity and the sequestration of death, Sociology, 27(3): 41131.  doi: 10.1177/0038038593027003005

    • Search Google Scholar
    • Export Citation
  • Noddings, N. (2012) The language of care ethics, Knowledge Quest, 40(4): 526.

  • Radden, L. (2011) On Delusion, New York, NY: Routledge.

  • Reamer, F. (2014) The evolution of social work ethics: bearing witness, Advances in Social Work, 1: 16381.

  • Rothman, J. (1989) Client self-determination: untangling the knot, Social Service Review, 63(4): 598612. doi: 10.1086/603729

  • Sass, L. and Pienkos, E. (2013) Delusions: the phenomenological approach, in W. Fulford, M. Davies, G. Graham, J. Sadler and G. Stanghellini (eds) Oxford Handbook of Philosophy of Psychiatry, Oxford: Oxford University Press.

    • Search Google Scholar
    • Export Citation
  • Steinbock, B., London, A.J. and Arras, J. (2013) Ethical Issues in Modern Medicine: Contemporary Readings in Bioethics, 8th edn, New York, NY: McGraw Hill Press.s

    • Search Google Scholar
    • Export Citation
  • Thompson, F. (2002) Moving from codes of ethics to ethical relationships for midwifery practice, Nursing Ethics, 9(5): 52236.  doi: 10.1191/0969733002ne542oa

    • Search Google Scholar
    • Export Citation
  • Wehmeyer, M. (2004) Beyond self-determination: causal agency theory, Journal of Developmental and Physical Disabilities, 16(4): 33759. doi: 10.1007/s10882-004-0691-x

    • Search Google Scholar
    • Export Citation
  • Wehmeyer, M. (2005) Self-determination and individuals with severe disabilities: re-examining meanings and misinterpretations, Research and Practice for Persons with Severe Disabilities, 30(3): 11320. doi: 10.2511/rpsd.30.3.113

    • Search Google Scholar
    • Export Citation
  • Woods, A. (2014) Lecture: ‘Narrative and Psychosis’, New Brunswick, NJ: Rutgers, The State University of New Jersey.

  • 1 Seton Hall University, , USA

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