Full transcript
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0:17Good morning everyone. I welcome you to
0:19this course introduction to medical
0:21humanities.
0:22Now like I said it's a very
0:25interdicciplinary multi-disiplinary kind
0:27of a course and therefore there are many
0:30words that you need to interpret within
0:33its domain something that we have
0:35understood uh in a very broader way in a
0:38very literal way transforms its meaning
0:41when it comes into the medical sphere
0:43gaze uh let us look at what I am going
0:46to do in this lecture today so there are
0:49many concepts like bioeththics care
0:51body, technology, caregiving, all these
0:55that I will discuss today and talk
0:58briefly about it very very briefly uh in
1:01terms of basic understanding of these
1:06particular concepts within uh the scope
1:09of medical humanities. We will begin
1:12with bioeththics. So broadly speaking
1:16when we think of bioeththics we combine
1:18two words. It's a it's primarily a field
1:20in philosophy but primarily if you see
1:23uh two words bio and ethics bio means
1:26body something which is physical and
1:29ethics related to morality but in the
1:32context of medical humanities it is a
1:34lot more let us go from here so
1:37bioeththics is primarily at its core
1:41asking a simple but profound question
1:44what should we do and what we shouldn't
1:48and also So why the term bioeththics was
1:51introduced in the United States in 1971
1:55by Van Recilia Potter who thought of it
1:58as a bridge between biological sciences
2:00and the humanities. His intervention was
2:03significant because it argues for
2:05critical and ethical reflection rooted
2:08in human values. Bioeththics is now used
2:11as a an umbrella concept encompassing
2:14several interrelated areas of ethical
2:17inquiry.
2:18The first area is biomedical ethics also
2:22referred to as clinical ethics. This
2:25area places the individual patient at
2:27the center of ethical deliberation. The
2:30second area is research ethics which
2:32includes questions related to informed
2:35consent. The third area is public health
2:38ethics which shifts the focus from
2:40individuals to communities. The fourth
2:43area is environmental ethics which
2:45places human interaction with the
2:47biosphere at the center of ethical
2:49concern. Most bioethicists work in one
2:53of three primary settings. Academic
2:56bioethicists conduct normative and
2:58empirical research on ethical questions
3:01related to medicine, science and
3:03technology. Clinical bioethicists
3:06practice through health care ethics
3:08consultation and assisted patients.
3:11Research bioethicists provide ethical
3:14guidance within academic medical
3:16centers. A critical contemporary concern
3:19within bioeththics is the need to create
3:22spaces for voices that have historically
3:24been excluded from the dominant spaces
3:28of knowledge making. The second concept
3:31that we will be dealing with that is
3:33body. Now body is usually interpreted as
3:38biological but in medical science body
3:42is assigned a meaning. It has a social,
3:45cultural and also a political identity.
3:48How do we then decode body? When it
3:51comes to medical humanities, let us
3:54first look at how biio-medinal practice
3:58and medical humanities view the body.
4:01While biio medicine often approaches the
4:04body as something to be examined and
4:06measured and repaired, the medical
4:08humanities asks how the body is
4:11experienced, interpreted, and situated
4:14within social relations. Biomedical
4:17practice traditionally views the body
4:20through anatomy, physiology and
4:22pathology, often fragmenting it into
4:25organs, systems and functions. Medical
4:28humanities foregrounds the idea of the
4:30lived body. The body as felt, sensed and
4:35inhabited. The body is also a social
4:38body. Social as in shaped by norms,
4:42culture, narratives, traditions, gender,
4:46cast, class, disability. I can go on so
4:50so many categories. Medical categories
4:54or medical understanding often sidelines
4:58these uh intersections.
5:01But when it comes to body within the
5:03medical humanities gaze, we emphasize on
5:07the value of these intersections, these
5:10factors to be taken into consideration
5:13while decoding what the body has
5:16experienced. Therefore, body cannot be
5:19understood in the isolation of the term
5:22body as in physical. In medical
5:24humanities, it's a very important
5:26construct because each one of us have a
5:30body and each body has a story, a story
5:33of medicine to tell. The third
5:37is the aspect of care that we have to
5:41take into consideration and care is
5:44often understood as attitude of looking
5:48after somebody else or caring for
5:51something. It's a very ethical idea. But
5:54let us go more.
5:56It basically involves practical labor,
6:00emotional engagement and responsibility
6:02towards others, especially those who are
6:06ill, disabled, elderly or dependent.
6:10Across societies, the majority of care
6:13work has historically been performed by
6:16women who are often assumed to be
6:19naturally suited to qualities such as
6:22nurturance, empathy, and generosity.
6:25Now, these assumptions are closely tied
6:27to women's role as daughters, wives, and
6:31mothers. Classical Marxist theories of
6:34labor, for instance, rarely account for
6:37care. Feminist scholars have pointed out
6:40that economically recognized productive
6:43labor is sustained by vast amounts of
6:46unpaid and underpaid care work. Largely
6:49these activities are performed by women
6:52and people of color in other spaces
6:55across the world.
6:57As hospitals uh took on the
7:00responsibility for treating illness, the
7:03home increasingly became the space for
7:05caring of people whose conditions did
7:08not require specialized medical
7:10intervention. More recently,
7:13deinstitutionalization
7:14has transformed care practices by making
7:17people with disabilities more visible.
7:20At the same time, care is often
7:22described today as being in crisis.
7:26Journalistic and policy discussions
7:28frequently frame care as an
7:30unsustainable burden. Medical and health
7:33humanities challenge this framing by
7:35asking a fundamental question. How do we
7:38define work, personhood and a good life
7:41for both caregivers and care receivers?
7:44In fact, I will talk about it in uh much
7:47detail when I uh take up the element of
7:51care in the literary or cinematic
7:53reflections. But at this point of time I
7:56think it's very important to take into
7:58consideration that care was always
8:00interpreted as caring for somebody else.
8:04But it is in contemporary times that
8:07even caregiver fatigue has been taken
8:10into its foray of care and that is also
8:14an important concern that has come out
8:16from you can call it either medical
8:18humanities or health humanities. The
8:21next point that I must talk about is
8:25contagian. Now the term contagion
8:29derives from the Latin word contagio or
8:32contagium meaning to touch together. The
8:36specific understanding of contagion as a
8:38form of communicable disease is
8:40historically more recent at least in the
8:43western context. The Oxford English
8:45dictionary traces this meaning and I
8:48quote the communication of disease from
8:50body to body by contact direct or
8:53indirect. This definition is assigned to
8:57the early 16th century. This historical
9:01shift reveals how contagion moved from a
9:04general idea of contact to a medicalized
9:07concept tied to infection and
9:09transmission.
9:11Debates around the proper use of the
9:13term highlight some of the central
9:15ethical and practical tensions within
9:18the health humanities and medical
9:20humanities study. One of the most
9:23influential critiques u and I will just
9:27discuss her in the next lecture. Susan
9:30Sag argued that the language of
9:33contagion often stigmatizes the sick by
9:36collapsing disease and person into one.
9:40In such framings, individuals are
9:42treated not only as ill but as threats.
9:46At the same time, contagion is not only
9:49a medical concept. It also unsettles the
9:52boundary between the disciplines.
9:54Contagion has functioned as a central
9:57metaphor across disciplines for
10:00understanding how ideas, emotions,
10:03language, and social formation spread.
10:06Scholars have used contagion to theorize
10:09community formation, communication and
10:11effect. Whether you understand it as
10:14virus or metaphor or effect, it brings
10:18pain, suffering and death into view
10:21while also revealing deep social
10:23inequalities. What do you mean by
10:25disease? And that is the next keyword
10:28that I will be discussing
10:30to introduce uh this question which says
10:35why what do we mean when we say disease.
10:38It is useful to recall the familiar
10:41parable of the visually impaired people
10:44touching an elephant. Now in this
10:47parable uh there is an elephant and uh
10:51the people who are visually impaired
10:54they are asked to
10:58narrate what the elephant is like. So
11:02whatever body part they touch they
11:05decode the elephant like that. disease
11:08is also pretty much uh in the same way
11:11because it can lead to multiple meanings
11:14in medical humanities.
11:17A historian of medicine Osai Tempkin
11:21described two broad and competing ways
11:23of thinking about disease. The first is
11:26the ontological view which treats
11:29disease as a fixed and identifiable
11:31entity. From this perspective, a disease
11:34is understood as something that exists
11:37independently of the person. Diseases
11:40such as plague, tuberculosis or covid
11:4219. The very recent COVID 19 are often
11:46understood through this lens. The second
11:49is physiological view which understands
11:52disease as something that is experienced
11:55differently by each individual. Here
11:58disease is not a single uniform entity.
12:01Instead suffering varies. It is seen as
12:04existing along a continum. Disease is
12:07not shaped by biology alone. But
12:10institutions such as medical
12:12authorities, pharmaceutical companies
12:15and governments play a central role in
12:17deciding what counts as a disease, who
12:20gets diagnosed and who receives
12:22treatment. Anthropologists have further
12:25shown that culture can materially shape
12:28itself.
12:29uh in fact if you talk about uh say
12:33menstruation in different cultural
12:35context it is treated differently. In
12:37fact why go elsewhere even in the Indian
12:41context the kind of cultural meaning it
12:43is assigned uh to in different parts of
12:46the world is very diverse. So you know
12:50uh same kind of
12:53so-called disease can have multiple or
12:57different kind of interpretations in
12:59different geographical and cultural
13:01context. And therefore when we say
13:04disease as a kind of uh word it cannot
13:09just be interpreted in a linear way. It
13:11can have very multiple meanings and that
13:13is what we have to understand and keep
13:16in mind while reading any of these texts
13:18in medical humanities. Now even the
13:21diagnosis as a word appears to be very
13:24simple in terms of its literal meaning.
13:27But when it gets to uh medical
13:30humanities it is very different. How do
13:32we see diagnosis then in the case of
13:35medical humanities? Every system of
13:37medicine has a way of attending to what
13:40a patient reports as wrong. Why do we
13:43say this? Because there is an
13:45interpretative process that is called
13:48diagnosis. However, diagnosis does not
13:52merely describe illness. It also
13:55performs ideological work whereby naming
13:58certain bodily states or behavior as
14:01abnormal. A diagnosis implicitly defines
14:05what counts as normal, healthy and
14:08acceptable. Practices of diagnosis are
14:11not unique to modern medicine. There are
14:14historical evidences suggesting that
14:16diagnostic protocols existed in even
14:20ancient civilizations such as Egypt.
14:23Mesopotamia, Greece, Rome, and Persia.
14:28Diagnosis from these periods may appear
14:30strange to us today, but this is largely
14:33because we do not inhabit the social
14:35world that produced them. Diagnostic
14:38categories are far from stable and
14:41they're very dynamic. For instance, the
14:4419th century diagnosis of soldiers heart
14:48was later reframed as cell shock, then
14:51battle fatigue, then combat exhaustion,
14:54and eventually post-traumatic stress
14:57disorder. Further, the intelligibility
15:00that diagnosis provides comes at the
15:02cost of objectification
15:04because diagnostic categories make
15:07suffering legible and manageable. they
15:10can reduce complex life into labels and
15:12reinforce inequality. So when you talk
15:15about diagnosis, it's important that we
15:18see its very interpretative meaning
15:22within the medical humanities.
15:26Now empathy um we have we must have
15:28heard of this word in tandem with
15:31sympathy uh and uh it's a very important
15:34word in uh medical humanities. Again, it
15:37is an ability to sense, feel, or respond
15:41to another person's suffering, needs or
15:43experiences. It is often treated as a
15:46core moral value that clinicians are
15:49expected to possess. The modern health
15:52care systems are seen as creating a
15:54paradox and therefore empathy is highly
15:58valued yet often missing in clinical
16:01encounters.
16:03Before empathy became common, uh,
16:05philosophers relied on the concept of
16:07sympathy. Adam Smith and David Hume saw
16:11sympathy as the imaginative capacity to
16:14connect with others joys and sufferings.
16:17But in the contemporary discourse,
16:19empathy became very valuable because it
16:22promises a direct embodied and emotional
16:26responsive connection between clinician
16:28and patient. Scholars however have
16:30raised important critiques in this
16:32regard. Some argue that empathy is vague
16:35and biased often privileging individual
16:38stories. Others point out that sympathy
16:42uh can be
16:44instrumentalized.
16:45For this reason, some scholars suggest
16:48shifting attention away from empathy
16:51towards care and rather than focusing on
16:54what clinicians feel care emphasizes,
16:57what is done, labor, responsibility, and
17:01of course sustained action. The next key
17:05word that we discuss is illness. And um
17:10illness is usually referred to the
17:13subjective experience of being unwell.
17:18Like the same kind of disease might have
17:23a different kind of effect on different
17:27kind of people in different set of
17:30backgrounds. So uh that is what illness
17:34uh as a keyword
17:37decodes in medical humanities. Again um
17:41like I must have stated earlier refrain
17:44from having a very linear understanding
17:46of their word. They uh emphasize on
17:50multiple meanings depending upon
17:54multiple contexts. So in this case uh
17:57when we discuss illness we find that
18:00unlike disease which is identified
18:02through biomedical tests and clinical
18:05criteria, illness exists within a
18:09person's social, personal and emotional
18:12world and cannot be fully captured by
18:15diagnostic tools alone. While illness
18:18refers to lived experience, sickness
18:21points to the social recognition and
18:23institutional management of that
18:25experience. Who is believed, who
18:27receives care, and whose suffering is
18:30legitimized.
18:31Illness is shaped by personal biography,
18:34family relationships, moral values, and
18:37cultural expectations making it
18:39inseparable from social experience.
18:42uh in fact Arthur Kenman talks about it
18:44and I will deal with his theories in the
18:48next I mean lecture and uh in in detail
18:53when I discuss the medical theorists.
18:55Medical humanities thus foregrounds
18:57illness precisely because it draws
18:59attention to forms of suffering that
19:01remain invisible within disease focused
19:04biosocial
19:05models. Illness can exist without
19:08disease. People may experience pain,
19:11exhaustion or functional disruption even
19:14when no clear biomedical diagnosis is
19:16available as in chronic pain. Illness is
19:20also a social and behavioral phenomena.
19:23Illness involves recognizing oneself as
19:26unwell and adopting behaviors associated
19:29with that state. Behaviors that are
19:31themselves culturally patterned. Illness
19:34therefore carries significant ethical
19:36weight and medical humanities insist
19:39that ethical medicine must respond not
19:42only to disease but to illness as lived
19:45suffering affirming patients experience
19:47as meaningful and worthy of discussion
19:50and attention. Power is uh another key
19:54word that we take into consideration.
19:55And when when I say power, don't just
19:59interpret it as uh ability or authority
20:04but more than that. Uh usually you will
20:07find that power refers to the ways
20:10authority, knowledge, institution and
20:12social structure shape uh health,
20:16illness and medical practice. But uh
20:18it's not like that. There is more to
20:21power when it comes to medical
20:23humanities.
20:25Medical humanities in terms of its power
20:29questions these categories in the sense
20:31that who defines
20:34illness, whose knowledge is taken
20:36seriously, who makes decisions and how
20:40care is delivered and experienced.
20:43Therefore, medical humanities challenge
20:45the idea that medicine is a neutral or
20:48purely scientific enterprise by showing
20:51how medical knowledge itself functions
20:54and power.
20:56Modern medicine exercises power by
20:59classifying bodies, naming diseases and
21:02establishing norms of normality and
21:04pathology. Power is especially visible
21:07in the doctor patient relationships and
21:10clinicians usually possess institutional
21:13authority, technical knowledge and
21:15decision-making power while patients are
21:17positioned as dependent or in need of
21:21interpretation. Medical humanities
21:23examines how this imbalance can be
21:28merged.
21:29Narrative approaches in medical
21:31humanities seek to rebalance power in
21:33clinical encounters. Rita Shahon argues
21:36that narrative competence allows
21:38clinicians to attend carefully to
21:41patients stories, restoring epistemic
21:43authority to those who live with
21:46illness. Importantly, power is not only
21:49oppressive, it is productive, and
21:51medical systems create possibilities for
21:54healing, protection, and collective
21:56well-being. Medical humanities therefore
21:59does not reject power but seek to make
22:02it visible, accountable and ethically
22:04grounded. The keyword of narrative when
22:09we say narrative we usually focus on
22:11stories. In our context, in the context
22:14of our course, we can talk about
22:16literary and cinematic narratives. But
22:19when it comes to the broad scope of uh
22:23medical humanities, narrative can be
22:25just anything.
22:27Anything that has the component of a
22:32story within. How do you then decode it?
22:37Because narrative is everywhere.
22:41You are walking on a street, you are
22:43going in a bus, you are attending a
22:46class, you're going to a grocery,
22:49narrative just prevails everywhere. It's
22:51kind of omniresent.
22:53But it has especially become important
22:56in medical humanities. And why do I say
23:00so? Because patients often tell stories
23:03about pain, illness, recovery, fear and
23:07hope that sometimes privately it is in
23:11the setup of a clinic or at other times
23:14it is publicly through memoirs, blogs or
23:18social media.
23:20In medical humanities, narrative
23:22practices such as close reading, careful
23:25listening, and reflective writing serve
23:28several important purposes. They help
23:31improve clinician patient relationship,
23:34question the assumptions of biomedical
23:36science, support patient and community
23:39advocacy, and expose the inequalities
23:43and ethical questions within that.
23:45Humans have told stories for 10 of
23:48thousands of years from early cave
23:51paintings to ancient epics. They are
23:54just everywhere. The formal study of
23:57narrative is called narutology which you
24:00will come across in many of the English
24:03literature, linguistics and other
24:06related domains. But to listen to a
24:08story whether a patient's illness or a
24:10testimony of suffering is to enter into
24:13a moral relationship with the teller.
24:16This insight explains why clinicians
24:18were among early adopters of narrative
24:20approaches. These developments reflect
24:23the growing recognition that stories
24:26remain essential for understanding
24:28health in an increasingly complex world
24:30of narration. The next key word is
24:34sickness and it does not only refers to
24:38the social meaning of uh sick illness
24:40but also how societies recognize,
24:44interpret or respond to and manage the
24:47bodily distress. A very important
24:50distinction here that we have to make is
24:52between or amongst disease versus
24:55illness versus sickness. Clinman talks
24:58about it in in great detail. But let us
25:00go briefly as to what it can mean in the
25:03context of medical humanities as a key
25:05word. So medical humanities emphasizes
25:08that sickness is a relational concept
25:11shaped by language, power, and social
25:14norms. What counts as sickness in one
25:17historical or cultural context may be
25:19recognized as such in another. This
25:22variability shows that sickness is
25:24deeply entangled with cultural values,
25:27stigma, and ideas of legitimacy. In
25:30stories of sickness, Howard Broody
25:33argues that people understand and
25:35communicate sickness through stories
25:37that give meaning to suffering, explain
25:40causes, and shape expectation of care.
25:43These stories do not simply describe
25:45sickness. They actively construct what
25:47sickness means for patients, families,
25:50and clinicians.
25:52They implicitly answer questions such as
25:54why did this happen? Who is responsible?
25:57What kind of care or support is
25:59deserved? At the same time, it also
26:02cautions against oversimplifying
26:04sickness narrative. When it comes to
26:07public storytelling, institutional
26:09campaigns or inspirational illness
26:11stories can flatten complex experience
26:14and expo impose acceptable ways of being
26:17sick.
26:19The second last concept that we deal
26:22with is the concept of space. And uh
26:26primarily if you think of what space
26:29means it you can think of it as
26:34geography
26:36you can think of it as infrastructure.
26:40You can think of the space between the
26:44patient and the doctor and also the
26:47medical space uh that is there. So when
26:51it comes to a space uh in detail what we
26:55can talk about is that bodies exist in
26:59specific environments homes, hospitals,
27:03clinics, streets, workspaces and
27:05communities and these spaces actively
27:07shape how illness is experienced,
27:10understood and treated. Medical
27:12humanities scholars argue that paying
27:14attention to spaces moves health beyond
27:17an individual and purely clinical frame
27:20towards a more socially and culturally
27:23grounded understanding.
27:25Conventional biio medicine tends to
27:27privilege clinic spaces such as
27:29hospitals, laboratories and diagnostic
27:32centers because these become the primary
27:34sites of knowledge. But
27:37medical humanities challenges this
27:39narrow focus by drawing attention to
27:42nonclinical spaces as well. Homes,
27:45religious sites, community settings and
27:48everyday environments where health is
27:50also produced and managed. It also
27:53further engages with the concept of
27:55therapeutic landscapes which refers to
27:57places associated with healing,
28:00well-being and restoration.
28:03These landscape may be physical, social,
28:05emotional and spiritual and their
28:08therapeutic value emerges through
28:10relationships between place, belief,
28:13practice and lived experience. Uh some
28:16of you have come across the concept of
28:18healing. You must have heard of this
28:21word. So healing is also a
28:25concept that is very much related to the
28:28concept of space.
28:30The last and uh the biggest uh of the
28:35key word that we have to interpret
28:37within the discourse of medical
28:38technology and that has kind of
28:41restructured revamped the entire
28:43discourse is the uh component of
28:46technology not just as an idea but as
28:50how the discourse of medical humanities
28:53uh has kind of changed with its
28:56intervention. Uh if you look at the
29:00origin of the word it stems from the
29:03Greek word techy meaning skill craft or
29:06making and loia meaning explanation or
29:09knowledge. Historically the term has
29:11referred not only to tools and machines
29:13but also to study of techniques applied
29:17sciences and industrial practice. If we
29:20go further it does not just produce
29:22devices. It also shapes habits,
29:26institutions and way of life. Medicine
29:29is deeply saturated with technology at
29:32every level. And this is the beginning
29:34point of what we contend from education
29:37to research to diagnosis, treatment,
29:39administration. There is one common way
29:42of thinking about medical technology
29:44that it is instrumentalist
29:46and it is therefore called the
29:48instrumentalist view. From this
29:51perspective, technologies are neutral
29:54tools used to achieve human goals. They
29:56have no agency of their own and are
29:59neither good or bad in themselves, but
30:02their moral value depends on how they
30:05are used.
30:07From the perspective of technology as a
30:10form of life to technologies are not
30:13just tools but forces that recognize
30:15social relations, values and
30:17expectations. They have gone on to be
30:21embedding different kind of responsible
30:24approach to medical humanity. Therefore
30:26requiring both perspectives together. So
30:29what you come across in medical
30:32humanities is a very responsible usage
30:36or how it is used how technology is used
30:39uh for the benefit of patients and the
30:43benefit of mankind that is what is
30:45interpreted. So you will find that many
30:48uh of these narratives uh as well in
30:51literature and cinematic narratives that
30:53I will discuss in in further for the
30:56time being I will stop here and in the
30:58next class uh we will discuss the major
31:01theorists of the medical humanities.
31:04Thank you.