Full transcript
0:16Hello everyone. I welcome you to the
0:19lecture 8 of our course introduction to
0:21medical humanities.
0:23In the last two lectures uh while we
0:26were trying to map the Indian medical
0:29humanities through the global health
0:31indicators, what we have done is that we
0:34have touched upon major organizations
0:37that have uh helped uh retain the global
0:41health uh standardization.
0:43And then we went on to discuss the
0:47policies that are significant in the
0:49context of India and tried to map the
0:52Indian context of medical sciences
0:55through three colonial periods. So uh in
0:58today's lecture what we are going to do
1:00is we will return back to uh the lecture
1:04four. If you remember I talked about the
1:07key theorist Susan Sag and her very
1:10famous book illness as metaphor
1:13published in 1978
1:15and in today's lecture I am going to use
1:18the same framework and analyze the same
1:21in the Indian context. Now you know when
1:24we talk about uh illness as a metaphor
1:28or for that matter any kind of metaphors
1:31language plays a very vital role in the
1:34context of India where there is so much
1:36of diversity in terms of language it
1:39kind of negotiates into different
1:41territories. How does that happen? I
1:44will discuss in due course of time.
1:46Quick overview I am going to talk about
1:49fundamental meaning of illness. Follow
1:51it up with illness as metaphor and then
1:53narrative medicine and gendered
1:55narratives of illness to different other
1:58aspects of how illness functions. Uh in
2:01fact I am going to take three aspects of
2:04illness. Uh the one is uh the disease
2:07aspect. uh where I talk about disability
2:11then I follow it up with mental health
2:14and to certain extent I take up the
2:16discourse of uh illness as metaphor into
2:19the area of aging and I give some
2:21examples. Now this is a very limited uh
2:26example that I'm taking but you can also
2:29expand it into other domains of uh
2:32metaphoric usage of illness. uh I am
2:36just giving you a cue of what is
2:38possible in this domain and how illness
2:41also works at as a metaphor. Introducing
2:44the concept of illness as metaphor in
2:46the context of Indian medical
2:48humanities, we come across medicine
2:52traditionally being concerned with
2:54diagnosing disease and prescribing
2:56treatment. Medical humanities however
2:59begins in a supposedly different manner.
3:02It begins with experience,
3:05meaning and context. It is also asking
3:10very fundamental question. How is
3:13illness lived in bodies, families,
3:16communities and institutions? And
3:18therefore in the context of India or
3:21even otherwise we do not find illness to
3:25be a rarely isolated event. When one
3:28person becomes ill, entire household
3:31reorganizes themselves economically,
3:34emotionally and socially. And then we
3:37see that medical decisions are shaped
3:39not only by doctors but also by elders,
3:43finances, gender norms and social
3:46expectations. Illness
3:48becomes a collective condition and not
3:51an individual one is something that we
3:53remember and therefore
3:56we cannot see because we are into
3:58community living we really cannot think
4:00of illness to be understood by the
4:04biology alone. What do we do then in
4:07that case we understand illness through
4:10stories, metaphors, social relations and
4:14structures of inequality.
4:16Now uh when we talk about Sag's model in
4:20which we we use illness as metaphor we
4:23find that metaphors of invasion
4:28corruption or punishment we this means
4:30that when we think of Sag's central
4:34argument that illness is rarely allowed
4:38to remain just a medical condition it
4:41turns into metaphors in the Indian
4:43context we find that illness also
4:46becomes some sort of a punishment. Now
4:49in a country which is driven by
4:52different kinds of beliefs. Sometimes
4:55illness can just be a punishment. So
4:57somebody who extremely spiritual can
4:59think that possibly it is my bad karma
5:02that has led me to the illness. So it's
5:05not just biomemedical but it leads to
5:08different kind of meaning that we have
5:10to assign to illness in the Indian
5:12context. So what all it can be? You can
5:15see it here. It can be a question of
5:17morality. It can be a question of
5:20character, danger, weakness,
5:23productivity and social order. And all
5:25these things can I mean occur in
5:29compartmentalization either or have
5:32overlapping effects as in how they
5:35exist. So this is what you have to keep
5:37in mind that when we think about illness
5:40in the Indian context, it can be just
5:42any of these or more than that. In that
5:45sense, when illness is framed as a
5:47battle, patients are expected to be
5:50brave and strong. When illness is framed
5:52as a decline or failure, patients are
5:55subtly blamed for not recovering. In
5:58both cases, the language plays pressure
6:01on the ill body to perform certain
6:03social expectations. This is why medical
6:05humanities takes illness as a metaphor
6:08seriously because metaphors shape. How
6:11do they shape? Who is blamed and who is
6:15cared for. These questions I have
6:17already discussed uh in lecture four.
6:20You can go back for more details on how
6:24illness is used as a metaphor and look
6:26into the theories of Susan Sag where I
6:30discussed this in detail. I'm definitely
6:32talking a little bit about here in the
6:34sense that whose suffering is recognized
6:37and whose is normalized like whose
6:40suffering is more important and also
6:43which bodies are seen as productive and
6:45which are burdened in an increasingly
6:48consumeristic society. This is an
6:50important aspect that we should be
6:52taking up. You know the more you earn
6:55the more you produce that is how we we
6:57live today. And in that sense what
7:00bodies whose bodies are important and
7:03who is productive that is an important
7:05concern when it comes to constructing
7:07the illness as metaphor. We then move on
7:12to talk about a very important concept
7:15which is the concept of disease within
7:17the illness. How do you classify? How do
7:21you diagnose?
7:23What is a disease? In the philosophy of
7:26medicine, you think of central debates
7:31concerning what exactly counts as
7:33disease. Naturalists account for disease
7:38involving a malfunction in the
7:41biological system.
7:43But constructivists
7:45think of disease
7:48depending on values and social judgment.
7:52Huge amount of difference between the
7:53two. The naturalists think of disease as
7:58representing a departure from species
8:02which is typical functioning.
8:05Constructivists account for calling
8:07disease a condition always involving
8:11normative decisions about significance
8:13and harm like what is it that is going
8:17to be harmful. Now both perspectives are
8:20important when thinking about disease in
8:23the Indian context. You cannot really
8:25think of either or in the Indian context
8:29because suffering is linked to disease
8:33being often observed in the everyday and
8:36yet scars it with a sense of things
8:39being not done quite right. So if you
8:42look at this particular quotation you
8:46find that everyday existence also
8:51assigns some kind of meaning to the
8:53disease and we
8:57a person who is suffering is a product
9:00of that particular kind of setup. In
9:04that sense disease does not always
9:06appear as a crisis. Instead it becomes
9:09part of how life is lived and managed
9:12quietly.
9:14Therefore when we think of disease there
9:17are four aspects that we have to think
9:19about.
9:21What do we think of then? The first is
9:25you have to think of disease in terms of
9:28economic condition and how the daytoday
9:33living depends on that. If you remember,
9:36I had spoken about
9:39health
9:40uh as per the World Economic Forum where
9:44you know a apart from education,
9:47economy, political participation,
9:50health was also important concern and it
9:54was said that the living condition is
9:57extremely crucial to how we determine
10:01the health. So when we talk about SDH
10:04social determinance of health the living
10:07condition is an important marker. So
10:10when you talk about living conditions
10:13poverty and weight of survival is
10:15crucial to the understanding of disease.
10:18Why? Because in the context of India the
10:22economic variability is a lot. So we
10:26have to take into account that aspect
10:28also when we understand disease.
10:32The second aspect of
10:35disease within the aspect of economy is
10:40that affliction is a form of suffering
10:44that corrods everyday life rather than
10:47spectacularly destroying it. This means
10:50that the decisions about treatment are
10:54shaped by cost
10:56and not just by the need of it.
11:00Therefore, when you think of disease,
11:04this aspect of economy is important. The
11:07second aspect you can take into account
11:10is the idea of how a person is seen and
11:14understood.
11:15Proomote K Nyer points out that
11:17Alzheimer's disease challenges the idea
11:20of a stable autonomous self. He notes
11:23that the disease produces narratives in
11:26which the person appears as a wounded
11:28self where identity is experienced as
11:32fragile and fragmented.
11:34So you find that
11:38while Pinayer talks about the idea of
11:42personhood in relation to Alzheimer's
11:46but you can just think of it it in terms
11:49of any disease and you find that the
11:52wounded self is
11:56crucial to the understanding of how a
11:59person responds to the disease.
12:02The third aspect that we can discuss in
12:06disease is that of memory. And here we
12:10think of again Alzheimer
12:14as uh as an example because in Alzheimer
12:17you find that it's the fear that the
12:19person is gradually disappearing.
12:22Na when he's talking about uh this
12:25particular disease he says that
12:28Alzheimer memoirs repeatedly describe
12:31the person with a disease as a shell or
12:34an emptiness metaphor that suggest loss
12:36of inner life. Similarly when we think
12:40about disease and the ethics of care we
12:43find that disease produces ethical
12:45demands on families caregivers and
12:48society. Vinadas writes that her concern
12:51is with the ordinariness of suffering
12:55and how people continue to make life
12:57habitable even under present affliction.
13:01This attention to endure shifts our
13:03focus from cure to care. So what is
13:07curable
13:08is sidelined and what can be cared comes
13:12to the forefront. And in fact sometimes
13:17you will find that there is a
13:20balance between the two or the care has
13:25taken the dominance over cure.
13:30We then come to the first aspect that I
13:32will be dealing with in terms of illness
13:36as metaphor. In fact these days we are
13:39not even uh calling uh disability in in
13:44that sense. So uh in the Indian context
13:47we have come across a situation in which
13:51disability which is a physical, sensory,
13:54cognitive or psychological impairment
13:57that limits an individual's functional
14:01capacity is
14:04thought of as
14:06something else. What do you mean by
14:09that? That we are referring to them as
14:11the vyang. So something which was
14:16missing from a person's body and seen
14:20like that is now seen as a special
14:24ability. Now this change of language
14:28also is reflecting of the change in
14:33attitude in how we perceive disability.
14:36Now um disability scholars uh strongly
14:40argue that disability is not merely a
14:43biological condition rather it is social
14:46cultural and political construct.
14:48Leonard J. Davis explains that modern
14:51societies are structured around the idea
14:53of normaly. Once bodies become
14:57standardized those who fall outside
14:59these norms become labeled as abnormal,
15:03deficient or disabled.
15:06As we will see, the social process of
15:08disabling arrived with industrialization
15:11and with the set of practices and
15:13discourses that are linked to late 18th
15:16and 19th century notions of nationality,
15:19race, gender, criminality, sexual
15:22orientation and so on. In the Indian
15:24context, this process is further
15:26heightened by cultural and moral belief
15:30systems. Apart from the religious and
15:32social systems, disability is often
15:35understood through karmic and spiritual
15:37frameworks which attribute impairment to
15:40moral failure or cosmic justice. So you
15:44find that in the context of India this
15:48is also a different kind of dimension
15:50that gets added.
15:52In that sense there are two models of
15:55disability that we have to think about.
15:57the medical model of disability and the
16:00social model of disability. If you can
16:02see it on your screen, you will find
16:04that most of the things listed
16:07disability as a condition located in the
16:10body or mind or a deviation from widely
16:13accepted norm or a consequence in which
16:17it individualizes disability ignoring
16:19social barriers, legitimizes
16:22institutionalization and segregation or
16:25reinforces dependency. all have a
16:28biological connotation. But in social
16:31model of disability, disability appears
16:34when social, environmental and
16:36institutional barriers restrict
16:39participation. What do you mean by that?
16:42This means that a person becomes
16:45disabled not because they cannot walk,
16:48hear or see, but because society is
16:51organized for walking, hearing and
16:53seeing bodies. Participation in
16:56education and employment by person with
16:58disabilities is profoundly shaped by
17:01infrastructural accessibility, assistive
17:04technologies and social attitudes. So
17:07all this becomes important. How does
17:10society perceives that disabled person
17:13becomes the social model of
17:16acceptability. Therefore you will find
17:18that many examples uh you can see how
17:22society has responded
17:25the person's
17:27attitude is decided by that. So earlier
17:30if you uh think of maybe 20 30 years ago
17:34most of the buildings did not have any
17:37accessibility plan but now all the
17:42institutes are having some kind of uh
17:45wheelchair accessible options. So you
17:48know this is a change in the attitude
17:51and this has led to the change in
17:53infrastructure as well. So what I'm
17:56trying to say is that when the society
17:58changes the attitude towards the person,
18:01it is not just the shift in the social
18:03model of disability but also somewhere
18:06it caters to the medical model of
18:09disability.
18:11There are three more aspects that I will
18:13discuss in the context of disability. I
18:15will begin with disability and stigma,
18:18follow it up with disability and other
18:20intersections and then discuss about
18:24disability in Indian cinema something
18:26that we will refer to in the later
18:28courses of our lectures. For the time
18:30being slightly I will introduce.
18:33Now when you think about this disability
18:36and stigma you come across situation in
18:40which stigma operates through process
18:43such as labeling, stereotyping, status
18:46loss, discrimination, social exclusion
18:49and negative emotional responses. Now
18:53when you think of this in the Indian
18:56context, disability is deeply shaped by
18:59stigma.
19:02This situation largely stems from
19:04persistent societal stereotypes and
19:06prejudices that portray person with
19:09disability as inferior or as a burden on
19:13family. I mean in all these uh kind of
19:18scenarios you find that disability is
19:23seen through the lens of stigma and
19:26whatever is the result is actually the
19:29social model of disability. In terms of
19:33other intersections that play a vital
19:35role in deciding what is disability or
19:38how disability is perceived, we come
19:40across some groups being more
19:42vulnerable. Now what do we mean by that?
19:45We mean the intersections of poverty,
19:50gender, age, cast, class and ethnic
19:54background as contributing factors to
19:59disability.
20:01Say for example if there is an
20:03individual A or individual B with
20:06certain kind of disability probably if
20:08it is a woman with disability they are
20:10less likely to access education and
20:13employment opportunities. Now this has
20:17largely lot of role to also address
20:21through the Indian cinema. So Indian
20:24cinema if you look at some of the films
20:27u you will find that the whole
20:31reflection of disability has been in
20:34such a way where disability looks like a
20:37tragedy
20:40in the recent years somehow you will
20:43find that shift in fact there are quite
20:46a few films that I can recommend not
20:48only in the Indian context but also in
20:51the context of
20:53uh west you might have seen a film
20:55called the notebook uh I think it came
20:58out in 2014 if I correctly remember
21:00which there was a film on Alzheimer's
21:02which I remember it's called still Alice
21:04Juliana uh a linguistics professor
21:07losing her memory I mean one of the very
21:10good films to analyze and in the context
21:12of Indian cinema you can watch three of
21:15us by uh I mean which has shali sha a
21:19very different kind of portrayal of how
21:22you see somebody disabled or for that
21:24matter margarita with a straw which I
21:26will also discuss some point of time in
21:29the entire duration of the course. So
21:31you find that the earlier version of
21:34representing disability in cinema was
21:37primarily through the trope of tragedy
21:40and therefore that hinders the social
21:42inclusions of person with impairments
21:45because that is often naturalized in the
21:48reflection. Contemporary films like I
21:50said are counternarratives and some of
21:53the examples can be uh the films that I
21:56talk about uh chef Alisha in three of us
21:59or for that matter Khali Kolchin in
22:02Margarita with a straw can be taken as
22:04reference point. uh let us now come to
22:07the first aspect which I'm going to talk
22:10about which is the mental health aspect
22:13and if you define what is mental health
22:16uh DH Bugra Alex and Norman Sartorius
22:20argue that mental health does not exist
22:23on its own. It is an essential and
22:26integral part of overall health. So what
22:29does this mean? This means that mental
22:32health can be any of these things that I
22:34mentioned. It can be absence of a
22:37disease. It can be in full functional
22:40capacity.
22:42It can be a state of balance within
22:44oneself and between oneself and one's
22:47environment. This means that mental
22:50health may be understood as a state of
22:52equipoise where the individual is at
22:55peace with themsel and is able to
22:58function effectively socially and is
23:00able to look after their own basic needs
23:03as well as higher functional needs.
23:06Mental health in that sense is
23:09relational and talks about emotional
23:13capacities. Therefore the whole idea of
23:17feeling of worth control and
23:20understanding of internal and external
23:22functioning can be within the scope of
23:25mental health.
23:28There are quite a few aspects that we
23:31have to discuss when we discuss mental
23:33health. The first one being the social
23:35foundations of mental health. Now what
23:38do we mean when we say the social
23:40foundation of mental health? It means
23:42that the lack of emotional resilience,
23:48poor self-esteem or feeling trapped or
23:52helpless. This can be one state in which
23:56you can discuss what you can call the
23:59social foundations of mental health. The
24:02reasons could be many amidst poverty,
24:06poor housing, discrimination, cultural
24:08conflict and stigma. They are shaped by
24:12social forces reflecting broader
24:14societal values. In terms of cultural
24:17dimensions of mental health, you think
24:20about whether the individual is
24:22sociocentric or egocentric. That is also
24:25determined by culture and personality.
24:28In India, since the self is often
24:30relational rather than individualistic,
24:33mental health may therefore needs to be
24:36evaluated in terms of family
24:38responsibility, marriage stability,
24:40social honor and community
24:42participation. In terms of mental health
24:45and social inequality in India, we find
24:48that mental health cannot be separated
24:51from gender- based violence, agrarian
24:53distress, urban migration and youth
24:56employment.
24:58It has to be viewed from the
25:00sociological perspective as mental
25:02distress often reflects disempowerment
25:06rather than individual pathology. So
25:08what I mean to say is that social
25:10inequalities can also lead to mental
25:14distress.
25:15The final aspect that I'm going to talk
25:18about is the concept of aging. Most of
25:21the times
25:23in many cultures you will find that
25:25aging is a natural process. But when and
25:28how aging can also be seen as a
25:31disability.
25:33I think uh we can take some examples
25:35from India here and it is important
25:38because uh age has a language a very
25:43metaphoric language assigned to it in
25:45the context of India. So what is aging?
25:48Aging is often understood as a
25:49biological inevitability, a gradual
25:52movement towards physical decline and
25:54mortality.
25:57Margaret Morgan Gullet in her seminal
26:00text age wise fighting the new agism in
26:03America published in 2011 argues that we
26:06inhabit a culture dominated by what she
26:09terms as a decline narrative. A script
26:12that frames aging as loss,
26:14deterioration, and diminishing worth. In
26:17India, where traditional frameworks once
26:19associated aging with wisdom and
26:21authority, neoliberal consumerism and
26:24youth centering media cultures
26:26increasingly normalize the same decline
26:29narrative.
26:30And therefore, when we find the
26:33emergence of agism and the new age
26:35ideology, the manifestation is in
26:37multiple ways. one the mandatory
26:40retirement age is the manifestation.
26:43What is a marriageable age is the second
26:46uh factor and the third is media
26:48advertisements where you know aging is
26:51portrayed as if it is a decline.
26:53Therefore when we find older women they
26:57usually occupy an ambivalent position of
27:01invisibility. Aging women are visible as
27:04caregivers, grandmothers and moral
27:06anchors yet invisible as autonomous
27:09subjects with desire, agency and
27:12intellectual vitality. So you find that
27:16aging
27:18is not just natural, it also has a
27:21social connotation to it. So when it
27:23comes to the illnesses metaphor
27:28theoretical framework, we also come
27:30across several phrases, idioms that talk
27:34about aging not in the light of a
27:38natural progress in one's life but a
27:42social meaning assigned to it. Therefore
27:45we come across three aspects of aging
27:48where dementia, memory and the fragility
27:51of subjectivity takes place where you
27:54know if somebody has dementia they are
27:56framed as a rupture in collective
27:58continuity like you're not continuing
28:01anymore you that there is a gradual loss
28:03of life that's happening and especially
28:06when it comes to women they may
28:08simultaneously experience cognitive
28:11vulnerability and caregiving burden. So
28:14even when they are not capable of really
28:17be in a position of caregiving there is
28:20still the burden that is existing. Uh
28:23other than that the framework of
28:26successful aging you know you see so
28:28many advertisements in which they say
28:30you eat this you will age successfully.
28:32You put this there will be no wrinkles.
28:35anti-aging all these are markers where
28:38you find that this is happening and this
28:41is not leading to the way biosciences
28:46has kind of thought about aging.
28:48Therefore when you think of aging there
28:51has to be a rethinking of aging as
28:53narrative and resistance. You find that
28:56the constructivist approach to life
28:59force is open to revision and aging in
29:02India today is existing at the crossroad
29:06of tradition and neoliberal modernity.
29:08So the neoliberal modernity is basically
29:11about consumeristic where aging aged
29:13women also are seen or aged people are
29:16also seen as product and how they cater
29:19to that but that has to be revisioned.
29:22So in that sense when you think of
29:24illness as metaphor you also find that
29:27it is a dynamic process. The way society
29:31changes so does it its culture and the
29:35language.
29:37Thank you.