Image from the graphic memoir Marbles: Mania, Depression, Michelangelo, & Me by Ellen Forney

Journal of Bioethical Inquiry, Volume 13, Issue 4 (December 2016)
Symposium: Composing Disability
Guest Editors: Abby Wilkerson, Joseph Fisher, and Wade Fletcher

Editorials

Which Lane Should We Be In?

Michael Ashby and Leigh E. Rich

Recent Developments

Regulating “Quack” Medicine and Decision-Making for Children Re-visited

Bernadette Richards and Michaela E. Okninski

Symposium: Composing Disability

Composing Disability: Diagnosis, Interrupted

Abby Wilkerson, Joseph Fisher, and Wade Fletcher
Writing is central both to the medical diagnostic codification of disability and to disabled people’s efforts to interrupt, complicate, or disrupt dominant medical narratives. This symposium, like the George Washington University conference from which it takes its name, creates space for diverse modes and genres of claiming authority regarding diagnosis and its cultural and material effects. “Queer” and “crip” interrogations of diagnosis illuminate its status as a cultural phenomenon, embracing culturally disavowed embodiments and embodied experiences as tools for diagnosing inegalitarian social relations and opportunities for cultural interventions. This symposium traces the workings of diagnostic normativity manifested in experiences such as “disruptive deafness,” unstable bodily materialities, pathologized grief and other forms of affective distress, and “surgical assemblages.” It presents a diverse array of compositions, articulated on each writer’s own terms, addressing a range of embodied experiences through multiple genres and voices, ranging from conversation transcript to scholarly essay, poetry, graphic memoir, and personal essay. Here, laypersons interrupt monologic medical diagnosis, claiming space to compose themselves. Together, the authors trace instances of corporeal “correction” back to the noxious agents, both environmental and political, that consistently breach the boundaries of corporeality.

Symptom and Surface: Disruptive Deafness and Medieval Medical Authority

Jonathan Hsy
This essay examines constructions of deafness in medieval culture, exploring how deaf experience disrupts authoritative discourses in three textual genres: medical treatise, literary fiction, and autobiographical writing. Medical manuals often present deafness as a physical defect, yet they also suggest how social conditions for deaf people can be transformed in lieu of treatment protocols. Fictional narratives tend to associate deafness with sin or social stigma, but they can also imagine deaf experience with a remarkable degree of sympathy and nuance. Autobiographical writing by deaf authors most vividly challenges diagnostic models of disability, exploring generative forms of perception that deafness can foster. In tracing the disruptive force that deaf experience exerts on perceived notions of textual authority, this essay reveals how medieval culture critiqued the diagnostic power of medical practitioners. Deafness does not simply function as a symptom of an individual problem or a metaphor for a spiritual or social condition; rather, deafness is a transformative capacity affording new modes of knowing self and other.

from The Hindrances of a Householder

Jennifer Bartlett

The Matter of Disability

David T. Mitchell and Sharon L. Snyder
By ruling out questions of impairment from the social critique of disability, Disability Studies (DS) analyses establish a limit point in the field. Of course the setting of “limits” enables possibilities in multiple directions as well as fortifies boundaries of refusal. For instance, impairment (the biological conditions of an organism’s inefficient attachment to the world) becomes in DS simultaneously a productive refusal to interpret disabled bodies as inferior to non-disabled bodies (i.e. pathologized) and a bar to thinking through more active engagements with disability as materiality. Disability materiality such as conditions produced by ecological toxicities serve as active switch-points for creative corporeal navigations of the interaction between bodies and environments. In fact in this paper we want to propose a more “lively” definition of disability materiality to existing definitions of impairment as limiting expressions of non-normative bodies. We have no useful ways of explaining disability as adaptation and it’s time we begin the process of theorizing more active ideas of materiality that extend existing ideas of disability beyond simplistic conceptions of socially rejected biologies made available by social constructivist thought.

Grateful

Kenneth Jacobs

Disability and Depression

A. Cvetkovich and A. Wilkerson
Here, Ann Cvetkovich, interviewed by Abby Wilkerson, brings Cvetkovich’s influential cultural studies analysis of depression explicitly into conversation with disability studies. Cvetkovich understands “feeling bad” (a term she prefers to “depression”) as a defining affective state under neoliberalism. Drawing on a distinctive historical/cultural archive, she challenges the atomism of the neoliberal medical model that frames depression and affective distress more generally as the result of faulty brain chemistry—individual organisms gone awry. Instead, she traces these common experiences to sociopolitical phenomena ranging from current neoliberal demands for productivity as exemplified in university life, to histories of colonization, slavery, and displacement. The conversation considers the value of disability frameworks for understanding mental health diagnoses and the intersections of social institutions, bodily practices, and everyday affective life.

Bipolar 1 as Graphic Memoir

Ellen Forney

De-Privatizing Self-Harm: Remembering the Social Self in How to Forget

Theodora Danylevich
This article reads Malu De Martino’s 2010 film Como Esqueçer (How to Forget) as a case study in self-harm as a mode of expression and self-inquiry. Drawing on disability and queer theory, psychoanalysis, and sociology of medicine, the author argues that How to Forget charts a “crip” epistemology of self-harm and theorizes a “social self.” That is to say, the film models an orientation towards self-harm that offers a coalitional and social therapeutic understanding. Based on this reading, the author suggests the application of practices of knowing-with, or knowing-in-relation as “cripistemology” to a broader therapeutic, research, and lay context.

Original Research

Relational Capacity: Broadening the Notion of Decision-Making Capacity in Paediatric Healthcare

Katharina M. Ruhe, Eva De Clercq, Tenzin Wangmo, and Bernice S. Elger
Problems arise when applying the current procedural conceptualization of decision-making capacity to paediatric healthcare: Its emphasis on content-neutrality and rational cognition as well as its implicit assumption that capacity is an ability that resides within a person jeopardizes children’s position in decision-making. The purpose of the paper is to challenge this dominant account of capacity and provide an alternative for how capacity should be understood in paediatric care. First, the influence of developmental psychologist Jean Piaget upon the notion of capacity is discussed, followed by an examination of Vygostky’s contextualist view on children’s development, which emphasizes social interactions and learning for decision-making capacity. In drawing parallels between autonomy and capacity, substantive approaches to relational autonomy are presented that underline the importance of the content of a decision. The authors then provide a relational reconceptualization of capacity that leads the focus away from the individual to include important social others such as parents and physicians. Within this new approach, the outcome of adults’ decision-making processes is accepted as a guiding factor for a good decision for the child. If the child makes a choice that is not approved by adults, the new conceptualization emphasizes mutual exchange and engagement by both parties.

Participation of Children in Medical Decision-Making: Challenges and Potential Solutions

Vida Jeremic, Karine Sénécal, Pascal Borry, Davit Chokoshvili, and Danya F. Vears
Participation in healthcare decision-making is considered to be an important right of minors, and is highlighted in both international legislation and public policies. However, despite the legal recognition of children’s rights to participation, and also the benefits that children experience by their involvement, there is evidence that legislation is not always translated into healthcare practice. There are a number of factors that may impact on the ability of the child to be involved in decisions regarding their medical care. Some of these factors relate to the child, including their capacity to be actively involved in these decisions. Others relate to the family situation, sociocultural context, or the underlying beliefs and practices of the healthcare provider involved. In spite of these challenges to including children in decisions regarding their clinical care, we argue that it is an important factor in their treatment. The extent to which children should participate in this process should be determined on a case-by-case basis, taking all of the potential barriers into account.

Should Children Be Given Priority in Kidney Allocation?

T. M. Wilkinson and I. D. Dittmer
Kidneys for transplantation are scarce, and many countries give priority to children in allocating them. This paper explains and criticizes the paediatric priority. We set out the relevant ethical principles of allocation, such as utility and severity, and the relevant facts to do with such matters as sensitization and child development. We argue that the facts and principles do not support and sometimes conflict with the priority given to children. We next consider various views on how age or the status of children should affect allocation. Again, these views do not support priority to children in its current form. Since distinctions based on age ought to be positively justified, the failure of all these attempts at justification implies that the priority to children is ethically mistaken. Finally, the paper points to evidence that the paediatric priority reduces the overall supply of kidneys, at least in the United States. Paediatric priority is a real-world policy that seems discriminatory, in some places probably reduces the supply of organs, has no robust official defence, and is unsupported by mainstream ethical principles. Consequently, it should be ended.

Documentation of Capacity Assessment and Subsequent Consent in Patients Identified With Delirium

Scott Lamont, Cameron Stewart, and Mary Chiarella
Background Delirium is highly prevalent in the general hospital patient population, characterized by acute onset, fluctuating levels of consciousness, and global impairment of cognitive functioning. Mental capacity, its assessment and subsequent consent are therefore prominent within this cohort, yet under-explored. Aim This study of patients with delirium sought to determine the processes by which consent to medical treatment was attempted, how capacity was assessed, and any subsequent actions thereafter. Method A retrospective documentation review of patients identified as having a delirium for the twelve months February 2013 to January 2014 was undertaken. Inclusion and exclusion criteria were used; demographic and descriptive data collected. A total of n=1153 patients were identified with n=310 meeting inclusion criteria. Result A random sample of one hundred patients were subsequently reviewed. One third of patients (n=33) had documentation relating to consent, while four patients had documentation relating to capacity. Median delirium duration was three days, with treatment refusal occurring in twenty-two patients and “duty of care” being used as an apparent beneficent related treatment framework in twelve patients. Conclusions While impaired decision-making was indicated, the review was unable to indicate what patient characteristics flag the need for capacity assessment. Documentation relating to consent processes (whether patient or substitute) appeared deficient for this cohort.

Inhospitable Healthcare Spaces: Why Diversity Training on LGBTQIA Issues Is Not Enough

Megan A. Dean, Elizabeth Victor, and Laura Guidry-Grimes
In an effort to address healthcare disparities in lesbian, gay, bisexual, transgender, and queer (LGBTQ) populations, many hospitals and clinics institute diversity training meant to increase providers’ awareness of and sensitivity to this patient population. Despite these efforts, many healthcare spaces remain inhospitable to LGBTQ patients and their loved ones. Even in the absence of overt forms of discrimination, LGBTQ patients report feeling anxious, unwelcome, ashamed, and distrustful in healthcare encounters. We argue that these negative experiences are produced by a variety of subtle, ostensibly insignificant features of healthcare spaces and interpersonal interactions called microaggressions. Healthcare spaces and providers often convey heteronormative microaggressions, which communicate to LGBTQ—and, we suggest, intersex and asexual (IA)—people that their identities, experiences, and relationships are abnormal, pathological, unexpected, unwelcome, or shameful. We identify heteronormative microaggressions common to healthcare settings and specify how they negatively impact LGBTQIA patients. We argue that standard diversity training cannot sufficiently address heteronormative microaggressions. Despite these challenges, healthcare institutions and providers must take responsibility for heteronormative microaggressions and take steps to reduce their frequency and mitigate their effects on LGBTQIA care. We conclude by offering strategies for problem-solving at the level of medical education, institutional culture and policy, and individual awareness.

Dialogic Consensus in Clinical Decision-Making

Paul Walker and Terry Lovat
This paper is predicated on the understanding that clinical encounters between clinicians and patients should be seen primarily as inter-relations among persons and, as such, are necessarily moral encounters. It aims to relocate the discussion to be had in challenging medical decision-making situations, including, for example, as the end of life comes into view, onto a more robust moral philosophical footing than is currently commonplace. In our contemporary era, those making moral decisions must be cognizant of the existence of perspectives other than their own, and be attuned to the demands of inter-subjectivity. Applicable to clinical practice, we propose and justify a Habermasian approach as one useful means of achieving what can be described as dialogic consensus. The Habermasian approach builds around, first, his discourse theory of morality as universalizable to all and, second, communicative action as a cooperative search for truth. It is a concrete way to ground the discourse which must be held in complex medical decision-making situations, in its actual reality. Considerations about the theoretical underpinnings of the application of dialogic consensus to clinical practice, and potential difficulties, are explored.

Critical Perspectives

The Ethics of Deprescribing in Older Adults

Emily Reeve, Petra Denig, Sarah N. Hilmer, and Ruud ter Meulen
Deprescribing is the term used to describe the process of withdrawal of an inappropriate medication supervised by a clinician. This article presents a discussion of how the Four Principles of biomedical ethics (beneficence, non-maleficence, autonomy, and justice) that may guide medical practitioners’ prescribing practices apply to deprescribing medications in older adults. The view of deprescribing as an act creates stronger moral duties than if viewed as an omission. This may explain the fear of negative outcomes which has been reported by prescribers as a barrier to deprescribing. Respecting the autonomy of older adults is complex as they may not wish to be active in the decision-making process; they may also have reduced cognitive function and family members may therefore have to step in as surrogate decision-makers. Informed consent is intended as a process of information giving and reflection, where consent can be withdrawn at any time. However, people are rarely updated on the altered risks and benefits of their long-term medications as they age. Cessation of inappropriate medication use has a large financial benefit to the individual and the community. However, the principle of justice also dictates equal rights to treatment regardless of age.

Erratum

Erratum to: Hard to Believe: Produced by Ken Stone and Irene Silber, 2015, Swoop Films and Stone Soup Productions (New York, 56 minutes, unrated)

Holly Louise Northam