Developing A Common Vocabulary: Questions of Purpose & Priority
Institute for the Development of Human Arts
*A version of this article is published in the Journal of Humanistic Psychology.
This article is a commentary on "Standards and Guidelines for the Development of Diagnostic Nomenclatures and Alternatives in Mental Health Research and Practice" by Kamens et al.
The “Standards and Guidelines” provide much-needed considerations for any agency or group undertaking the project of creating diagnostic/descriptive categories, including the vital assertion that those with lived experience of mental distress must be a valued part of the process. However, in order to fully take into account the unique needs of those with lived experience, we must also question the very assumption that diagnostic and descriptive systems are necessary to promote wellbeing. This manuscript addresses the current tension in diagnostic priorities and explores the benefits of encouraging personal expressions of mental distress in the context of activism and peer support.
When it comes to classifying and categorizing human experience, it is appropriate to first ask “for what purpose?” Such a project could conceivably contain a number of objectives, depending on the values and interests of the individuals designing that particular system. Though often obscured, personal beliefs, assumptions, and values do have a huge impact on such projects. As cited in the “Standards and Guidelines,” the American Psychological Association (2017) Code of Ethics for Psychologists begin with non-maleficence, do no harm, and beneficence, promote well-being. Yet, when applied to the current American Psychiatric Association’s (2013) diagnostic system for categorizing mental distress, the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), efforts have failed to avoid harm and benefit individuals whose very experience it seeks to describe. In fact, the implications of the current diagnostic system’s attempt to follow through with these principles are so rarely measured by the very people they aim to serve. In addition, those who are most impacted by mental health diagnoses have not historically been offered a seat at the discussion table.
The DSM’s limitations and failures have led to multiple new projects seeking to classify mental distress. As a response, the “Standards and Guidelines” offer thorough, thoughtful, and vital recommendations for any group or organization undertaking such a project. What remains to be challenged in the dialogue around creating diagnostic and descriptive nomenclatures is the idea that a common vocabulary for mental distress is necessary to promote wellbeing. If beneficence is the primary goal of mental health research and practice, creating a common vocabulary/descriptive system to classify human experience may run counter to the unique needs of those with lived experience.
The Tension in Diagnostic Priorities
As mentioned in the “Standards and Guidelines,” the goals of diagnostic categories for mental distress have not traditionally been altruistic and more reflected preoccupation with legitimizing and upholding psychiatry as a science on par with medicine. This strategy has lead psychiatry to further adopt a biomedical model of mental distress, utilizing the Western medical field’s “symptom and cure” mentality, and searching for distinct “illnesses” that could be measured and validated. Granted, this attempt has been largely unsuccessful with each new version of the DSM remaining questionably reliable and valid (Cooper, 2014; Regier et al., 2013). But that has not halted the proliferation of the medical model or of diagnostic categories, the systematic valuing of objectivity over personal experience, and the attempt to streamline medicalized treatment for mental health issues. The current diagnostic system acts essentially as the gatekeeper for treatment, regulating access based on diagnosis, and limiting personal agency when it comes to choosing types of support. It has been taken for granted by many mental health professionals and the general public that this kind of classification and systematization is necessary to support and treat individuals whom it seeks to classify.
Over time, it’s become more and more clear that medicalized language for mental distress is insufficient. Designed for symptom and disease management and eliminating “problem” behaviors, it does not always support or take into account transformation or wellness as defined by those being treated. As Bonnie Burstow & Brenda A LaFrancois (2014) put it, “Psychiatry is not about benevolence, care, or help” (p. 3). Current diagnostic categories do not and never have reflected the values and language of many of those receiving mental health services. While more clinicians and prescribers are agreeing that a paradigm shift in diagnostic systems are necessary, not all new frameworks involve individuals with lived experience. In fact, there appears to be a strong tension between creating more rigid systems of classification based on scientific objectivity and systems that acknowledge the complexity and multiplicity involved in describing inner experience of mental distress. The “Standards & Guidelines” appear to be a solid prescriptive reaction to the larger context of diagnostic overhaul, address a strong need for both ethical and scientific principles, and provide a response to the question “if a new system were to be developed, who gets a seat at the table?”
Several examples of new diagnostic and descriptive frameworks have recently been published, adding to the tension between scientific objectivity and personal narrative. On one side of the spectrum, the Research Domain Criteria (RDoc) has been developed by NIMH to classify mental illness based on neurobiological and genetic markers (RDoC Snapshot, 2017). The RDoC project was developed in response to the DSM’s lack of reliability and objective measures of behavioral analysis, with the aim of identifying the neurobiological causes of mental disorders (NIMH Strategic Plan, 2015). Consistent with its aim, RDoC focuses almost exclusively on objective measures and biogenetic research, virtually erasing personal experience, context, trauma, marginalization, and social/environmental factors. While RDoC eliminates all previously used diagnostic categories, breaking down behavior into smaller constructs (e.g. “acute threat,” “visual perception,” etc.), the RDoC system does nothing to revisit the underlying assumptions of diagnosis and psychopathology (RDoC Snapshot, 2017). Rather, it’s another system defining human experience on a scale of normal to abnormal. Not only is it developed without the knowledge of experts by experience, it asserts that the underlying cause of mental distress is neurobiological in nature, an argument that has been contested by many researchers, clinicians, and professionals in the mental health field (Kinderman, 2014; Read et al. 2014).
Many of the researchers who look beyond biogenetic causes of mental distress point to trauma and adverse childhood experiences as key contributing factors (Kinderman, 2014; Read et al., 2014). In stark contrast to RDoC, a new model that draws on trauma-informed work, called the Power Threat Meaning (PTM) framework, was developed by the British Psychological Society Division of Clinical Psychology in direct collaboration with mental health service users (Johnstone, L. & Boyle, 2018). The PTM framework interprets what are typically considered symptoms of “mental illness” as a response to a threat, difficult experience, or adversity that can then prompt feelings such as shame, anger, and other emotions. (Johnstone & Boyle, 2018) The PTM Framework is novel in that it
replaces the question at the heart of medicalisation, ‘What is wrong with you?’ with four others: ‘What has happened to you?’ (How has Power operated in your life?), ‘How did it affect you?’ (What kind of Threats does this pose?), ‘What sense did you make of it?’ (What is the Meaning of these situations and experiences to you?), ‘What did you have to do to survive?’ (What kinds of Threat Response are you using?)” (Johnstone & Boyle, 2018, p.10)
Using these questions to garner a deeper understanding of the individual, the PTM framework then highlights personal strengths and narrative to focus on an individual’s sense of empowerment. Far from pathologizing mental distress, this framework acknowledges that what is typically seen as abnormal behavior is often a natural response to adversity and can only be defined in light of societal values and cultural contexts (Johnstone & Boyle, 2018).
With such a diversity of systems being created to understand and describe mental distress, it’s inevitable that certain systems will recreate the DSM’s shortcomings without proper guidelines. Addressing this inevitability, the “Standards and Guidelines” provide thorough, ethically sound, and scientifically relevant standards for those seeking to take on such a project. The “Standards and Guidelines” do the service of explicitly stating the need for individuals with lived experience of mental distress to be deeply involved in the process of developing new concepts and categories. They also highlight the diverse uses of first-person accounts and subjective experiences in the development process without narrowly defining how they should be used. The “Standards and Guidelines” make a strong case for a range of multidisciplinary stakeholders to be adequately represented and engaged in the decision-making process. This includes those from multiple cultural contexts and demographics which the diagnostic system will impact. The “Standards and Guidelines” also vocalize the need for marginalized and oppressed groups, which have historically suffered negative consequences of diagnostic and medical intervention, to participate and offer their voices in the formation of descriptive systems. The “Standards and Guidelines” even address issues such as conflicts of interest and requiring that committees make explicit (as the “Standards and Guidelines” themselves do) the values and assumptions upon which the classification system is based. While the “Standards and Guidelines” offer an extremely thoughtful set of touchstones for a diverse set of multidisciplinary leaders, these guidelines alone may be insufficient to address the current power imbalance, the domination of the medical model, and the unquestioned assumption that classifying mental distress is necessary for providing proper mental health care and support.
An Uncommon Vocabulary
It has long been assumed that the scientifically validated classification of mental distress (typically for the purpose of diagnostic assessment and treatment) is the vital precursor to conducting accurate research and determining best treatment practices (American Psychiatric Association, 2017). At the very least it has gone unquestioned that the search for a common vocabulary around mental distress is a project that directly benefits those who use mental health services. Proponents of diagnostic categories may assert that we cannot properly study or treat something if we do not know exactly what it is that we’re treating. However, implicit in this notion is the idea that there’s an underlying illness or disease to be discovered that professionals can fix, manage, or treat, perpetuating the current disease paradigm in mental health and disregarding other methods of understanding mental distress.
Shared language and concepts of mental distress may have the ability to promote relatability and connection, inspire new theories and practices, and support the production of research. I don’t intend to imply that the project of creating a common vocabulary for mental distress is inherently based in the biomedical model, nor that it necessarily has negative implications. There have been plenty of mad activists, such as Nikomeh Anderson, creator of “The People’s DSM,” providing a forum for those with lived experience to creatively explore their own language and frameworks (The People’s DSM, 2017). As evidenced in this case, when the motivation for this shared language is determined by those for whom it seeks to describe, particularly within small communities with common goals, it has the potential to promote connection and shared understanding.
Other mental health activist initiatives share common goals without the need for a shared language or framework. Organizations, such as The Icarus Project, embrace the diversity of language and terms used, stating in their values: “We honor the language people use to define their experiences and we respect how people choose to navigate their distress. We embrace diversity, harm reduction, and self-determination. Everyone is welcome, whether they support the use of psychiatric drugs or not, and whether they identify with psychiatric diagnoses or not” (The Icarus Project, 2017). Or take for example, The Institute for the development of Human Arts (IDHA), a community of like-minded clinicians, experts by experience, and mental health workers of all kinds who are dedicated to creating opportunities for critical dialogue, mutual support, and advanced education in the mental health field (IDHA, 2017). What makes IDHA so distinct is not only the intersection of interdisciplinary mental health professionals and those with lived experience, but the idea that a multiplicity of frameworks, concepts, and language around mental/emotional distress are not a tension, but rather of great value. In their mission, they state “We encourage professionals and non-professional community members alike to explore multiple perspectives, always prioritizing the agency of individuals and communities to choose the ways in which they understand and describe their experiences” (IDHA, 2017). From my own experience being involved with these organizations, what makes them so unique is the notion that a shared language, framework, and understanding of mental health is not necessary to promoting wellness, social justice, and support.
On the other hand, the systematic labeling of individuals experiencing mental and emotional distress has led to plenty of negative consequences including, but not limited to, internalized stigma, bullying, dehumanization, criminalization, oppression, and other human rights issues (Mehta, & Farina, 1997; Schnittker, 2008; United Nations, 2017). Not only are those who receive diagnostic labels more likely to have violence committed against them, but these labels also have drastic implications for the way individuals come to understand themselves (Desmarais et al., 2014). In other words, the language we use to understand and describe ourselves informs the personal narrative we have about our lives and our identities. When an individual willingly or unwillingly gets a mental health diagnosis, this often has the implication of being seen or viewing oneself as ill, having a brain defect, being unable to make rational decisions, and having little to no control over oneself or the future. Labels as stark as mental health diagnoses leave little if no room for personal narrative and understanding. Moreover, the very motivation to systematize, categorize, and label human experience risks erasing the unique experiences of those who receive the label.
Examples in Peer Practice
To further explore the value of personal narrative, I will describe some of my experiences working with individuals as a peer specialist. Having worked in the mental health system previously as a crisis counselor in a more traditional and hierarchical setting, it was a conscious choice to move into a peer support role. In contrast to my prior role, when I meet with an individual as a peer, I am not in the slightest bit interested in their diagnosis or conducting any assessments. I neither consider myself a blank slate nor do I insist on my own values and perceptions. Although I am a person with a rather specific lens through which I view myself in the world, I do not attempt to conceptualize or assert any construct on another’s experience. What matters in the moment of encountering another individual is the relationship that is built amongst us, based on an inherent validation of their personal worldview.
Therefore, when an individual attempts to communicate their inner experience to me using an expression like “I feel like a bass guitar that is badly out of tune” or “the fire in my heart has been extinguished,” it provides me with significantly more information than a diagnostic category like “bipolar.” The metaphors, realities, and subtleties become a launching point for exploring complex feelings and emotions that can’t be conveyed in a single word, phrase, or category. Even concepts like “hopelessness” and “despair” don’t do justice to the nuances of personal experience and narrative. I, as a peer, don’t need to conform to this narrative or share the same language, I simply need to honor it and wholly legitimize it. My task in that moment is not only to listen but to gain a color picture of the context of their life, something that is not fully possible through classification, psychosocial assessments, or traditional treatment.
When we allow people to describe for themselves what they are experiencing, whether it is aligned with psychiatric diagnoses, artistic expression, structural/social analysis, spiritual concepts, or a trauma framework, we create an open dialogue that is much more effective in providing support and setting the stage for mutuality. We allow a connection to be made that isn’t stifled by asserting epistemological power. We are able to further understand the individual’s beliefs, values, and dreams. Instead of asking standard assessment questions, assuming a particular framework, we are able to begin with circumstances that the individual finds relevant to themselves, the reasons and causes they feel are pertinent. By trusting their wisdom and insight equally, if not above, our own, we start from a much deeper level of awareness.
Life without rigid classification systems for mental distress not only allow space for personal meaning, but could also pave the way to further peer-informed research and practice. Research methods have the potential to shift to accommodate subjective experiences without systematically codifying them, putting those with lived experience in charge of shaping research questions, methods, and dissemination. New concepts can and often do spring forth from expressive modalities, art and humanities, not just scientific domains. People who suffer from mental distress can develop relatability and connections with one another based on a number of things, not simply diagnostic categories, such as a shared life experience, a common event, or the dimension of experience it is described (i.e. using a spiritual, physical, or emotional language to describe an experience). Peer led/informed organizations such as the Institute for the Development of Human Arts and the Icarus Project have the potential to stimulate more meaningful dialogue and practice, challenging current paradigms and finding common ground within a diversity of language and frameworks for understanding mental health.
It is imperative that we not only develop firm guidelines that include those with lived experience in the decision-making process of developing descriptive systems of mental distress, but that we also switch our focus from finding a common vocabulary/descriptive system to allowing individuals to speak for themselves. If our priority is truly beneficence, we must begin with personal and empowered narrative. We must ask the right questions that aren’t fraught with harmful power dynamics and masked assumptions. We must focus on researching and promoting the qualities of mental health support that provide best outcomes, many of which may not begin with a pre-definition or assessment of the “problem.” Perhaps, through acknowledging and validating the drive to express our unique understanding of ourselves and our experiences, we can find and work towards our shared goals.
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