As a child, I was gravely ill with pyloric stenosis, a congenital stomach malformation. Most cases are diagnosed very early in life and are easily treated with surgery. My case was unusual because it took two years to diagnose. My mother fought tirelessly to have my condition taken seriously but was belittled and dismissed as overbearing. She was pushed into a state of chronic sleep deprivation, staying awake for days on end to keep me alive. Following eventual surgery I recovered well without obvious long-term effects and have since been predominantly healthy. But I remain profoundly shaped by this early life experience. When we think about delayed diagnosis, we usually blame the patient. We are told to be vigilant about our health, scrupulously checking for signs and symptoms of disease, and immediately reporting them to a doctor when they occur. Sometimes, however, we are failed by this process.
This situation was all too familiar to my mother, who several years prior, suffered myxoedema coma after having undiagnosed hypothyroidism for around 20 years. She developed PTSD following this highly preventable near-death experience, exacerbated by the misogynistic and racial abuse she faced from some clinical staff. I cannot imagine the further trauma she must have experienced by seeing the same thing happen to her own child. By failing to perform appropriate medical ‘compliance’ and passivity she and her child were denied urgent care, even where her refusal to accept clinical authority saved our lives. I have seen the same thing happen to other family members experiencing diabetes-related complications and chronic, debilitating pain. In every case, the spectre of prior mental distress and medical trauma has been abusively instrumentalized as evidence of hypochondria and a justification for undue discharge.
Under neoliberalism we have seen an intensification of the obligation to ‘look after ourselves’. The collective stress of the pandemic has been taken as an impetus for each one of us to prioritise our health through the adoption of health-enhancing behaviours and strategies, collectively termed ‘self-care’. Dominant public health framings of focus on ‘healthy’ choices and lifestyles. Eat well, sleep well, exercise regularly and you will remain fit and of sound mind. Crucially, this ‘care of the self’ broadcasts to the world that we are responsible citizens, maintaining the strength to work hard and avoid becoming a state burden. If the pandemic has underscored anything most clearly, however, it is the extent to which disease is socially and structurally patterned. Both so-called chronic and infectious diseases are shaped by the social environments in which they arise, distributed along lines of structural vulnerability and oppression.
I begin with this account of my early childhood because I believe it is illustrative of a contemporary approach to medicine that is, in many ways, punitive rather than caring. This is not an old argument. Foucault famously formulated that medicine is a matter of power and discourse, both able to shape and to be shaped by broader systems of governance. While it is indeed difficult to attribute power in simplistic ways when considering the variegated and multifaceted reality of negotiating care, it is not necessarily clinical practice that is the object of this critique, but rather an idealised system of medical knowledge and authority that has come to be known in the social sciences as ‘biomedicine’. I suggest that biomedicine shares features with the prison-industrial complex and carceral system. Insofar as biomedicine remains dominant, healthcare will continue to punish certain patients, like the family members I discuss, with a denial of care.
POINTS OF CONVERGENCE
Medicine and the carceral system both carry ideas about who is most deserving of care and compassion. Punishment is based partly on a process of ascribing ‘innocence’ and ‘guilt’. To be guilty is to be deserving, in some capacity, of reproach and retribution. Sentencing may depend on degrees of innocence, whether that be through intentions, social characteristics or the immediate circumstances of the ‘criminal’ event that make you appear less guilty. Your continued involvement in society hinges upon judicial assessments of you. The degree to which a patient is offered care is also related to innocence. The patient must make the case for their affliction as separate to their character or personhood. When symptoms cannot be easily explained, as in the case with many chronic illnesses, then it becomes a struggle for legitimation. This does not just lead to immediate dismissal but the accumulation of maligning traces – medical notes, messages passed covertly between staff – that may foster deep institutional mistrust and trauma.
In many cases, such assessments of innocence, and thus deservingness, are bound up with how we construct social categories. The historical linking of blackness to aggression, for example, might feed both into overpolicing and overdiagnosis with schizophrenia of black men. The tendency to downplay women’s pain cannot be uncoupled from both a legal codification of women as weak and the failure of the state to do justice by survivors of abuse. Yet the self-fashioning of medicine and the carceral state as empirical and fair, naturalizes decisions to care and to punish. The stated epistemological neutrality of biomedicine and the law prevents us from meaningfully deconstructing and critiquing the discourses that shape understandings of crime and disease. But to fail to consider how gender, as an overarching political and cultural system of classification, influences the construction and assignment of traditionally feminized diagnoses, such as borderline personality disorder and fibromyalgia, or the limited grounds upon which we classify rape, for example, is to fail to understand the fundamental complexity of illness and violence as they manifest in a vastly unequal world.
Related is the individualizing approach taken in biomedicine and by the carceral state. ‘Crime’ presupposes a logic of choice where perpetrators decide to harm their victims. Even where compulsion is factored in, this is seen as fundamentally interpersonal. It is rare for broader social conditions to be considered, yet it is impossible to extricate ourselves so neatly from the social conditions in which we live. Illness is similarly assumed to be an individual affair. It is treated through medication and behavioural adjustment with scant reference to our social environment. Even public health has imbibed this understanding, reducing the ‘social determinants’ to matters of individual choice regarding diet and exercise. It is increasingly clear that our lives are profoundly shaped by structures that exist outside of ourselves, structures that in fact shape the very conditions of our experience. By focusing on individual choice, medicine and the carceral state obscure both the primary drivers of disease and violence, and the ways in which our own self-understandings are embroiled with social meanings generated in the worlds around us.
Both biomedicine and the prison-industrial complex may act as institutions of control. It is clear how locking people up has traditionally been used to quell dissidence. But hegemonic configurations of health also encourage conformity and compliance. We are regularly burdened by an impulse to display bodily normality, whether that be in the form of a ‘healthy weight’ or measured emotional responses. But we might ask how and why certain norms exist, and what purposes they might serve? An illustrative example is sleep. We are told that regular, uninterrupted sleep is a key to well-being. A look at European social history suggests, however, that sleep was once undertaken in two phases in the so-called West, a pattern that is, in fact, pervasive across cultures. There was a marked shift coinciding with industrialization and the ensuing institution of the ‘working day’. Is it then surprising that a very particular model of sleep emerges as healthful, when our social conditions render other patterns impossible? Is this model of sleep then naturalized to maintain institutional control and foster capitalist productivity?
All of this is not to say that medicine necessarily fails to care for us in practice or that both healthcare and our legal institutions can be simplified into a divided picture of powerful, consciously manipulative doctors and judges, and powerless, universally suffering patients and defendants. But it is to highlight some of the shared logics underpinning biomedicine and the carceral state, and to critically reflect upon how they influence both access to care and the forms that care take. How might particular social conditions have led to the undiagnosed suffering that I experienced as a child, for example? Was the situation a result of isolated mistakes or a failure of current medical practice to sufficiently account for the social complexity of illness? With these thoughts in mind, I turn to abolition and the imaginative possibilities that it generates.
BUILDING AN ABOLITION MEDICINE
Abolition, as a social movement and system of thought, calls for an end to policing and incarceration, and seeks to build alternative structures in their place. Abolition is not simply about absence but rather the collective establishment of systems of care and mutual aid that eliminate the need for carceral approaches to interpersonal harm. Instead of creating endless cycles of violence through incarceration, abolition calls for us to engage in the slow and difficult work of rehabilitation, acknowledging that care, however painful, is the only way to create less violent worlds. We might consider how these ideas can be applied beyond the scope of prisons and policing to healthcare.
Abolition places ‘crime’ in its full context. It recognizes that our behaviours are shaped by social conditions and structures of oppression. Crime is often a matter of survival or a way to make life more bearable under various limits. Our intentions might even be obscured from us, influenced in complicated and immeasurable ways by our interactions with others. Recognising this, we might resist the impulse to quickly accuse or punish others. Abolitionist healthcare might also refrain from accusing people of malingering even if we cannot immediately find a clear cause for their symptoms. It might empathise with people’s inability to stay healthy through a set of prescriptive and rigid ideas about what health looks like. Affording care demands attention to the interlocking, variegated environments that shape our health. We might not find answers; illness often eludes categorization or causal explanation. But abolitionist healthcare might resist the urge to chastise people for failing to lose weight or to continue with a particular medication regimen, for example, acknowledging that many factors might complicate our actions and choices.
Abolition further entails troubling purportedly natural categories. Does a set of actions constitute a ‘crime’ because of the harm it causes or because it contradicts hegemonic norms and values? Even where immense harm is enacted, this does not mean that we shouldn’t pay critical attention to how that harm is narrativized and the uneven ways that blame is distributed in our society. Abolitionist healthcare would too de-naturalize taxonomies of ‘disease’ and ‘normal’ bodies. It would encourage us to consider the complex, social aetiologies of disease categories. Diagnosis would no longer be our focus, challenging the assumption that all bodies behave similarly, or that the lived uncertainty of illness can neatly be summarized by a single designation. Diagnoses are useful but they serve a strategic function in assigning appropriate care. They are not an end in themselves, nor do they represent the unearthing of an inherent biological truth.
Abolitionist healthcare shifts treatment away from the clinic as health becomes relevant to all political and social action. Understanding the diversity of pathways through which oppressive conditions are embodied as disease alerts us to the role of political and social interventions in enabling health. This means recentring care in our vision of a just society. Care is difficult. It involves long, arduous work, negotiating needs mutually, even when they might contradict each other. Care is imbued with power; we cannot eradicate it. But we can name it and thus seek to mitigate its effects. We can find ways to distribute care across communities to balance our needs and avoid exploitation. We can recognize the value of institutional expertise without imbuing any single person with total authority. A caring approach means a recognition that doctors alone cannot solve everything. Caring for bodies is less a matter of finding cures than it is creating comfortable living conditions and providing the emotional and physical support that makes treatment possible. And most importantly, a caring approach demands a commitment to dismantling the oppressive structures that make many of us ill. Abolition encourages us to do all of these things. Perhaps it’s time to expand its remit to medicine so that we may imagine new ways of fostering healthful futures.
Esther Kaner is a master’s student in Medical Anthropology and freelance writer interested in community health activism, collective care, and the biosocial embodiment of inequalities and oppression. She has helped campaign and co-produce research for Medact and has been involved in the struggle for trans health justice. She is also a survivor of clinical depression and intergenerational medical trauma and uses her life experiences to inform her work. Other examples of her writing can be found in Tribune and Ceasefire. She can be found on Twitter: @EstherKaner.