Routledge Handbook of the Medical Humanities

Bleakley Alan, Bleakley Alan

• Publisher: Routledge
• Year: 2019
• ISBN:
  9781351241755
• Edition: 1
• Topic: Medizin
• Subtopic: Medizinische Theorie, Praxis & Referenz

This authoritative new handbook offers a comprehensive and cutting-edge overview of the state of the medical humanities globally, showing how clinically oriented medical humanities, the critical study of medicine as a global historical and cultural phenomenon, and medicine as a force for cultural change can inform each other.

Composed of eight parts, the Routledge Handbook of the Medical Humanities looks at the medical humanities as:

• a network and system
• therapeutic
• provocation
• forms of resistance
• a way of reconceptualising the medical curriculum
• concerned with performance and narrative
• mediated by artists as diagnosticians of culture through public engagement.

This book describes how the medical humanities can be used in and out of clinical settings, acting as a point of resistance, redistributing medicine's capital amongst its stakeholders, embracing the complexity of medical instances, shaping medical education, promoting interdisciplinary understandings and recognising an identity for the medical humanities as a network effect. This book is an essential read for all students, scholars and practitioners with an interest in the medical humanities.

PART I

Medical humanities as networks, systems and translations

1

A DOSE OF EMPATHY FROM MY SYRIAN DOCTOR

Randi Davenport

A woman with a debilitating disease finds hope in a man who’s come from a war-ravaged country.

He lifted his glasses and let them rest on his forehead before taking hold of my right leg. “Pull me closer,” he said.

I pulled.

“Push me away.”

I pushed.

I thought: This is the game lovers play. Pull me closer, push me away, each action holding the promise of a specific outcome: If I push you away, you will come after me. If I pull you closer, you will let me in. But he wasn’t my lover. He was my doctor.

And then I felt my leg give way, a sensation of water running downhill. I came back to myself. To the blue-white light of the exam room. The crinkly sound of the paper on the table. The feeling of his hand on my skin as again he told me to pull him closer. To push him away. The sensation of weakness once more, this time in my left leg.

He made no comment, but I saw the studied flatness of his expression. I looked down at the shrunken muscles in my feet, at my paralysed toes. And then I looked up at him. He reached into his lab coat, pulled out his reflex hammer and took aim at my knee. My leg jumped, the spasm of a too-brisk response.

“You are fine,” he said, his words inflected by the Syrian accent that gave me so much comfort. “Trust me.”

I tried to trust him, but I wasn’t fine and we both knew it. My motor neurons were failing. They had been failing for two decades, slowly, in a sleepy subterranean wave.

I knew I was lucky. Motor neuron disease is incurable and most people who have it die within a year or two, maybe five. But I was still alive. Soldiering on.

So when my doctor said I was fine, he meant he had discovered nothing new and alarming during this exam. I was holding steady. I wasn’t fine but I wasn’t dying, either.

We met every three months. The regularity of these appointments, and the close monitoring that the schedule suggested, should have terrified me. Instead, it made me feel safe. As time passed, I realised it wasn’t just the monitoring that brought me comfort but the doctor himself.

I liked the way he wore his hair cut short, so I could see the contours of his skull. I liked the shape of his hands and the patient way he answered my questions. And if I hesitated, not wanting to talk about embarrassing symptoms, he would soften his voice and give me a mild look. “Tell me,” he’d say, and I’d tell him.

One night I dreamed of him standing in the middle of a wasteland, a world exploded by war, his sleeve pushed back so I could read the watch on his wrist. The dial read 10 minutes to 8. In the dream I thought, “Oh thank God. I still have time.” But when I woke up, I felt only terror. “Time’s running out,” I thought.

I sent my doctor an email and he responded right away. “Do not worry,” he wrote. “You are fine.” I felt the force of his words, the shelter of his certainty.

It’s axiomatic to say that patients with serious illnesses fall in love with their doctors, seeing them as points of light in an otherwise dismal sky. But I knew this wasn’t love. It was desperation, a finger-hold on a cliff before the fall.

I wasn’t in love with him, but I had come to depend on him. I was accustomed to taking care of myself and I had let him take care of me. I let him see that I was scared. And when I let him see my fear, I had to see it, too. My own fragility. The stuff I couldn’t just power through.

Despite this, he gave me hope. This was the ammunition that fuelled my fight.

“Pull me closer,” he said each time we met. “Push me away.”

I asked about his family in Syria.

“You don’t want to hear this,” he said, as formal and as courteous as ever. But eventually he told me about his reckless nephews. His brother-in-law with cancer. His mother and sisters who remained there, watching daily for things that could fall from the sky: bombs, pieces of aircraft, the flotsam of war.

Inadvertently, I winced and turned away. When I looked at him once more, he was watching me recoil from things unknown.

“You are fine,” he said, and smiled.

Not long after, three Muslim students were shot in our town, killed when they answered a knock at their apartment door. In San Bernardino, Calif., a newly married couple, their toddler at her grandmother’s house, opened fire in a room full of county office workers. And all the news was about shooters from ISIS, Muslims and the threat they posed to the American way of life.

At my next appointment, I could tell my doctor was preoccupied.

“What’s wrong?” I asked softly.

“It is nothing,” he said. He wouldn’t look at me.

I thought about the way he had come to America and chosen to work at a big state teaching hospital so he could help poor people. How he had come here to be safe and to offer safety. I had never seen him look as defeated as he did now.

“Tell me,” I said.

He hesitated and then he said he was afraid for his wife and children. He would be fine, but he worried about them. “People are crazy,” he said. And then he began to talk about leaving America, maybe moving to Dubai.

“You will break my heart,” I said. I thought I was joking, but a minute later I was weeping.

I understood why he wanted to leave. But I also knew that if I was still alive, it was because of him. His bravery mattered when mine faltered. His mantra, “You are fine. You are fine,” cut through my doubt when it seemed there was no light.

How many effects of warfare are invisible, revealed only in human trembling, that shivering language of fear? The twitching, failing muscle. The bullet in the air. Each equivalent to the other, it turns out, when the coming damage is unknown, but certain.

I wanted him to be safe. The same thing he wanted for me. And I knew I was helpless to procure that safety for him, because some people are, indeed, crazy. And he was just as helpless when it came to halting the march of my illness.

I said his name and he turned to face me.

“I am with you,” he said, as if I had asked him for something, his voice fierce again. His face filled with resolve. “I am not going anywhere.”

“You’re O.K. too,” I replied, wiping my eyes, knowing my words were futile but needing to say something anyway. “Nothing’s going to happen,” I said, even though I could not possibly know if he would be all right. Even so, I barrelled on. “Your family will be all right. You’ll be all right.”

He smiled gently and shook his head. And then I realised something: He had never once tried to reassure me about the future in that way, with false hope. He had only ever spoken about the present, telling me what he knew to be true. I was still fine. I was not yet headed for a quick death. And that was what had given me comfort.

“You are fine,” I offered softly, thinking that, for at least this moment, he was. But as soon as I said this, he flicked his glance away and did not reply.

I did not blame him for ducking the conversation the way you would dodge a downpour of rain. We could hear nothing of war in that cool place, where the only sounds came from the elevators rising and falling. There were no bullets flying. No audible dying off of this neuron or the next. These things are silent until they are upon us, and by then it is too late.

So we sat without speaking, together in the dark night of that bright room. But if he had taught me anything, it was that comfort resides in the rituals of care, the steady application of optimism, the shivering light of faith in the fact that I was still okay.

And so I thought: What can I offer when the only thing I have is hope? And then: You can be his patient. You can let him take care of you.

Almost as soon as I thought this, he reached into his lab coat for his hammer. “Go like this,” he said, cupping his fingers so that one hand hooked into the other. When I did, he told me to pull. Then he hit my knee with the hammer and resumed his exam.

Reprinted with permission of The New York Times. First published 14 April 2017 in the series ‘Modern Love.’

2

THE CULTURAL CROSSINGS OF CARE

A call for translational medical humanities

Julia Kristeva, Marie Rose Moro, John Ødemark, and Eivind Engebretsen

Introduction

Modern medicine is confronted with cultural crossings in various forms: The migration wave in Europe has imposed a new awareness of the cultural dimensions of both physical and psychological therapy (Napier et al. 2014). Religious and ideological radicalisation has raised related questions about how to draw the line between pathology and conviction, and how to deal with cultural and religious discontent, also in clinical settings (Kristeva 2016). The Lancet Commission on Culture and Health (Napier et al. 2014: 1607) provided important insights into the cultural dimensions of health and wellbeing; most radically, it pointed out that “the distinction between the objectivity of science and the subjectivity of culture” is “itself a social fact.” When the Lancet commission aims to create awareness about the “effect of cultural systems of values on health outcomes,” however, it implicitly reinforces the ontological divide that caused the problem in the first place.

We believe that the medical humanities should play a vital role in a more radical rethinking of the divide between science and the humanities. But we also maintain that this endeavour calls for a fundamental rethinking of the medical humanities themselves. Such a rethinking should address the grounding assumptions about what the humanities are, as well as how they can interact with biomedicine in research, in the production and use of evidence, and in the practical art of care. Drawing upon the seminal work of Julia Kristeva (2003, 2011, 2012, 2013, 2016), we will argue that the medical humanities should fully acknowledge the pathological and healing powers of culture, and approach the human body as a complex bio-cultural fact. Consequently, cultural dimensions should no longer be construed as mere subjective aspects of medical care, but as being constituent of, and ‘hard’ factors behind, sickness and healing. A key element in such a project is the development of a new notion of ‘translation’ in the interdisciplinary space of the medical humanities.

Cura and the chronotopy of care

We will begin to tackle the challenges facing the medical humanities by way of a reading of a myth attributed to the Roman mythographer Hyginus (1960). The protagonist of the myth, the goddess Cura (Care), is traditionally associated with creativity and care, but also with concern and anxiety. Our reading of the myth of Cura draws upon and expands Kristeva’s use of the tale in Hatred and Forgiveness (2012). Here, Kristeva uses the fable to reflect on the creation of man as a being belonging to different ontological domains and temporal orders. According to Hyginus’ anthropogony, Cura crosses a river and on the other side bends down to the earth to pick up a clump of clay. From the clay she shapes a being that will become man. Jove, the celestial god of lightning and thunder, comes along, and Cura asks him to give life to the artefact she has produced. Jove complies, and gives the gift of spirit to the shape formed by Cura. But now a quarrel erupts over the name of the new creation. Should it be named after Cura who gave it form or after the male celestial god who gave it spirit? At this stage Tellus, the god of earth, intervenes and claims Cura’s creation, arguing that he provided the material from which it was formed in the first place. Saturn, the god of time, settles the matter through an act of naming, and by dividing and temporalising the possession of the various parts that comprise man: Jove is offered man’s soul and Tellus his body, after man’s death, while Cura will possess the creation in its lifetime, since she made it. Saturn names the new being homo because it was originally shaped out of humus. According to the myth and the Latin pun that sums up its moral, then, human life as a composite assembly of spiritual (Jove) and material (Tellus) elements is held together by Cura’s temporal care.

The myth of Cura has been subject to various literary elaborations and philosophical elucidations, and it has also been read in the context of the medical humanities (Heidegger 1962; Reich 1995; Kleinman and Van Der Geest 2009; Svenaeus 2011). Characteristic of Kristeva’s reading, however, is her use of the myth to question the fundamental conceptual distinctions that underpin modern medicine and the medical humanities. Moreover, this reading illuminates what we here will refer to as the chronotopic organisation o...