Full transcript
0:18Hello everyone. I welcome you once again
0:20to this course titled Introduction to
0:22Medical Humanities. We are in the fifth
0:25week and this is lecture 24. Let me
0:27quickly summarize what we have done in
0:29this particular week. We dealt with
0:31childhood and disability and followed it
0:34up with disability and masculinity and
0:37then we discussed the component of
0:40sports and how it intersects with
0:42disability. In today's lecture we are
0:45going to talk about chronic illness and
0:47disability and in the subsequent lecture
0:50I will follow it up with aging into
0:52disability and that pretty much will be
0:55how we will take up the disability
0:57quotient in medical humanities. Let us
0:59get going from what I will have to say
1:01here. The title of my lecture today is
1:04living with chronic illness as
1:05disability. Now a quick overview what
1:09I'm going to do is I'm going to discuss
1:11chronic illness in our context cancer
1:15with particular reference to three texts
1:17that I have chosen on your screen.
1:19Yuvraat Singh the test of my life
1:21Manisha Koala's healed Lisa Ray's close
1:24to the bone. While discussing the
1:28definition of health earlier uh when I
1:31was discussing the key words I have
1:32already discussed how WH defines health.
1:36So health is a complete physical, mental
1:40and social well-being and not just the
1:42absence of any disease. Something that
1:45we have emphasized not only at that
1:47point of time but even later. However,
1:50but when we discuss it as a component of
1:53medical humanities and its broader
1:56implications, we definitely
1:58differentiate health with that of
2:00illness where illness is a subjective
2:03experience. It's a lived experience of
2:05feeling unwell if you are suffering from
2:08any health condition. There are two
2:10kinds of illness that we can think of.
2:13One is acute and one is chronic. When
2:15you talk about acute its onset is
2:18usually sudden. Examples can be
2:21influenza, bronchitis, tonsillitis, sore
2:24throat, appendicitis, earachche, so
2:26many. But chronic is not like that. And
2:29that is what is our point of focus
2:31today. In chronic illness, the disease
2:33will at least last for 3 months or
2:37longer and may get worse over time.
2:40Something like cancer, something like
2:42diabetes, hypertension, multiple
2:44sclerosis, all these diseases that you
2:48can think of have a very long-term onset
2:52and effect. So chronic illness actually
2:55is not just about the disease. it can
2:58damage the integrity of the body and the
3:01self.
3:03Moving further, we uh we have already
3:06discussed earlier about how disability
3:09as a discipline came. So, discipline
3:12wise along with the disability rights
3:14movement
3:16simultaneously disability studies as an
3:18academic started coming. Now at its
3:22core, disability studies asks, "How does
3:25society understand, construct, and
3:27respond to bodies that function
3:29differently?" Colin Barnes, writing from
3:31the Center for Disability Studies at the
3:34University of Leeds, explains that
3:36disability is caused either by chronic
3:39illness or impairment or by the complex
3:42interaction between the limitations of
3:43the body or mind and society at large.
3:47So for example, a person who is uh using
3:52a wheelchair is not disabled by their
3:54legs rather they are disabled by a
3:57building without a ramp. Similarly a
4:00cancer patient is not only contending
4:02with tumors and chemotherapy they are
4:05navigating around social stigma, fear,
4:08the pressure to appear strong and the
4:10weight of other people's expectations.
4:13All of this form the disability quotient
4:17which you have already looked in the
4:20social construction of disability.
4:22Therefore, what happens? The idea of the
4:25normal body is not natural. It's
4:28constructed. In fact, it's constructed
4:30in the society and that is what we are
4:32going to engage with. Now disability
4:35studies as a discipline examines the
4:38these kind of narratives, the stigma
4:42associated with it, the shame component
4:44and different other aspects that you can
4:49think of that gets mediated around
4:51society when it comes to a chronic
4:53illness. It also engages with illness
4:56narratives, literature, media and
4:58activism to understand how disabled
5:01lives are represented and understood.
5:06Moving further, we will quickly take up
5:08what accounts for illness narratives.
5:11And uh while there are three things that
5:14are important here, I will quickly give
5:17you a background of what I mean when I
5:20say illness with particular reference to
5:22American psychiatrist Arthur Michael
5:24Clinman. uh we also dealt with him he's
5:28one of the foundational theorists in
5:31medical humanities and while I discussed
5:33three theorists in perhaps lecture four
5:37uh where I mentioned these three
5:38theorists Susan Sagita Sharon uh along
5:42with Kenman so Klenman is you will see
5:46many of his references throughout when
5:48you develop more interest in medical
5:51humanities and if you want to pursue
5:52more reading into into this field. You
5:55will have to read Clinman in great
5:58detail. But here, so he says that the
6:00illness narrative is the story the
6:02patient tells and significant
6:05others retell to give coherence to the
6:08distinctive events and long-term course
6:10of suffering. What does this mean? That
6:13it's a very rich idea. The illness
6:15narrative acting as a meaning making
6:17process in a way to make sense of
6:21everything that feels around. It's a
6:23very subjective kind of inexperience
6:27narrated and that is what Clinman
6:29emphasizes in the role of deciding or u
6:34giving meaning to a particular disease
6:37in medical humanities. Levi at all
6:39mention three types of illness
6:41narratives. One is the cho story. Now
6:44what is a cho story? In this kind of
6:47narrative, there is no resolution
6:50which means that they capture the
6:53disorientation and terror of illness and
6:56the narratives that cannot yet assemble
6:59into any particular kind of a meaning.
7:03The restitution story is the second one
7:06and in this
7:08mostly it is very culturally dominant
7:10and you will find that it follows the
7:13logic of I was ill, I fought, I
7:16recovered and now I'm back. So many
7:20times you will find that these kind of
7:24narratives are the most celebrated one
7:26because in restitution or you restore
7:29what you were earlier. So uh the whole
7:32narrative is about the struggle and the
7:36comeback both. That's why it's called
7:38the restitution story. The third is the
7:42quest story. And here the journey of
7:45illness becomes a journey a quest for
7:48oneself where the person is not simply
7:51restored to who they were before. So in
7:55these three categories you can divide
7:57the illness narratives of chronic
7:59illness and all of them offer different
8:03narratives of patients with chronic
8:06examining how grieving process connects
8:09and how storytelling shapes our
8:10understanding of chronic illness and
8:13survival. So despite this categorization
8:16where you have chaos, restitution and
8:18quest, you still can find a very
8:23individually customized
8:26story which is either of the two or more
8:28than that. So uh but broadly speaking
8:31this is the division we have to look for
8:33when it comes to chronic illness.
8:36Uh many of these examples I have taken
8:39from uh Professor Nyer's book PK Nyer.
8:42you can uh Google his book which I read
8:45and which is more of a reference point
8:47if you are interested in uh reading more
8:50about celebrity narratives. So let me
8:53give you a little bit of background on
8:54how celebrity culture works in India. It
8:57is constituted primarily by film stars,
9:01sportsmen and their lives. So what do I
9:05mean by celebrity here? This is
9:07inclusion of these two and that is what
9:09celebrity means. So earlier people were
9:12hush- hush about their lives but
9:15recently several Indian celebrities have
9:17written memoirs about their experiences
9:20with cancer transforming personal
9:23illness into public narratives.
9:26These narratives are of survival of
9:29resilience of awareness. So you will see
9:33that they have talked about their
9:36disease or they have talked about their
9:38illness openly and also their struggle
9:42with it to create an awareness for the
9:45public. Now memoir also is
9:50considered to be more authentic, more
9:54personal. It's a genre in which a
9:56person's life is narrated either by uh
9:59the person himself or herself or
10:02somebody else writes it but uh in tandem
10:05with what the person is saying about
10:07one's life. So the because the form of
10:12memoir is such that there is so much of
10:15personal narrative its impact with
10:18regard to achieving social justice for
10:20those living with disability becomes
10:22more. Why? Because there is more
10:26authenticity attached to what one is
10:29saying. Now the private experience of
10:33illness becomes a resource for public
10:36discourse. We have for instance the kiss
10:39of life written about Imran Hashmi's son
10:44Ayan the test of my life by Singh and
10:48close to the bone by Lisa Ray and healed
10:51by Manisha Kerala. Let us begin with
10:55Yuvraat Singh the test of my life. The
10:57test of my life was written with Sharda
11:00Ugra and Nishant Aurora. And this
11:04particular memoir
11:06chalks out the journey of Yuvra Singh
11:12cricketer and what happened to him when
11:14cancer happened. Here is a man who in
11:172011 was named the player of the
11:19tournament at the ICC cricket world cup
11:21India
11:23and was on the top of his game and
11:26within months he was diagnosed with
11:28mediastinal seoma cancer.
11:32A rare form of cancer located in the
11:34chest. The memoir narrates what happens
11:37when this happens. The physical
11:40realities of chemotherapy,
11:42hospitalization,
11:43hair loss, and weakness are all of it on
11:47the page. But what makes the memoir
11:50particularly rich for our purposes is
11:53how it deals with the emotional and
11:55psychological dimensions of that fall,
11:57the vulnerability behind the public
12:00success. Now, if you look at the title,
12:04the title in itself is very led. It's
12:06called the test of my life. And the test
12:09is not in the sense test but test as in
12:12cricket. As you know test is a long
12:15format. So for Yvraat Singh as well this
12:18was a long format in which he was
12:23playing the game of his life in some
12:25way.
12:26The athletic body is put into question
12:30because if you look at one of the
12:32exerpts he writes I thought I'm young.
12:35I'm a sportsman. I'm living my life full
12:38tilt. I have just won a world cup. How
12:41can I have a cancer? So the very
12:43quotient of disbelief is how he begins
12:47uh with now the single sentence if you
12:51can see on your screen here. This
12:54creates a kind of a diagnostic map for
12:58the entire journey or the entire central
13:03tension of the memoir. The athletic
13:06body, young, disciplined, triumphant, is
13:09supposed to be invulnerable. The cricket
13:12body is a national body. It carries the
13:15weight of India's sporting pride. For
13:17that body to become cancerous is not
13:20just personally shocking. It is a
13:23disruption, a whole discourse of
13:25masculine national invincibility.
13:29Lena England describes the disability
13:31mama as a text that negotiate what it
13:35means to live with in or as anomalous
13:38body. That's precisely what Ira Singh is
13:41doing here. His body has become
13:43anomalous. It does not fit the script he
13:46or anyone else had written for it.
13:49Disability theorist Michael Bur here on
13:52your screen calls it biographical
13:54disruption. This means that
13:58you do not imagine your biography like
14:00that. So there is a plan you imagine
14:05that this is going to be my life like
14:08but there is something sudden that
14:10happens that disrupts the pace of your
14:12life. And when you read more of this
14:17theory called biographical disruption,
14:19Michael Bur says that not only you but
14:23what others have also imagined by you
14:25gets disrupted and that is why it's
14:27called the biographical disruption. So
14:30the moment the diagnosis happens the
14:34coherent narrative of life requires to
14:38be reassembled. In the case of Yurat
14:40Singh, you find that with initial uh
14:45disbelief of his body being uh you know
14:51uh attacked by cancer was something that
14:53he didn't believe. It was not in his
14:55scheme of things and he then came back
14:58and rewrote uh his entire
15:02course of life.
15:05Manisha Kyala's healed is another memoir
15:07that I want to take into consideration.
15:09Uh pretty much all of you must be
15:12knowing who she is and uh this
15:15particular book healed is written with
15:20Nilam Kumar and it recounts her journey
15:23after being diagnosed with ovarian
15:25cancer in 2012.
15:27Now many of you must have seen her films
15:31and who can forget
15:35She was the poster girl for being
15:38simple, serene, beautiful
15:41actor on screen. And then suddenly there
15:44was this turning point that changed
15:47everything for her. However, what
15:50distinguishes Kerala's memoir from
15:52Yuvraj is its register.
15:56Yuvra Singh's narrative is urgent,
15:59combative and athletic in its pace. But
16:02Koala's narrative is more contemplative.
16:06She reflects on cancer as a kind of
16:09awakening and a turning point that
16:11forced her to look inward in ways she
16:14had never done before. The memoir
16:16foregrounds the psychological and
16:19spiritual dimensions of illness and how
16:24different healing practices, diet,
16:26self-care and emotional well-being made
16:30her realize how she wanted to recuperate
16:33in due course of time.
16:35There is also a sense in Kerala's
16:38narrative that the illness despite its
16:41horror gave her access to a more
16:43authentic version of herself. And she
16:46reflects on this not just as a personal
16:49experience but as something she wanted
16:51to share and to teach others. This move
16:54towards social contribution is a key
16:57feature of celebrity illness memoir and
17:00we'll come back to it. I will take up a
17:03small excerpt from uh memoir and that
17:06will kind of build on what I'm trying to
17:08say because uh if you read her memoir
17:12primarily it is a journey towards
17:14oneself.
17:16So through cancer or through the journey
17:19of battling cancer she not only
17:22recovered but that was an inward journey
17:26is something Kerala points out. So she
17:29writes, "It devastated me to hear people
17:32tell me that yesterday year's slim,
17:34beautiful girl had gained weight." And
17:36it was true. I just could not stop the
17:39kilos from piling up, especially around
17:41my stomach. Now, when you read through
17:44these lines, what do you come across
17:48that in celebrity culture,
17:53there is so much of emphasis on what is
17:56seen on the screen. So there is an
17:59obsession
18:01or there is a fetish to look a certain
18:05way on screen and in the case of Kerala
18:10it was all going away. She was fighting
18:13for her life and therefore there was
18:15absolutely I'm sure no time or
18:19bandwidth left for her to look in a
18:22certain way because there was certain
18:25idea of how an actress should look and
18:28therefore Kerala's memoir is a direct
18:32engagement with Bollywood's economy of
18:34appearance machinery like no matter what
18:37comes to what your appearance has to
18:40look just perfect or traditionally what
18:44has been assigned a perfectl looking
18:47actor from how society perceives uh a
18:52celebrity
18:54and then she writes so has cancer
18:56changed me she questions so has cancer
18:59changed me yes I share precious life
19:03lessons at various schools hospitals and
19:06organizations I feel expanded in heart
19:09generous in spirit It is my time under
19:12the sun now. I'm burning with the desire
19:14to give back to the society. And this is
19:18where the biosociality
19:21comes in. And he describes that uh how
19:24people form social identities and
19:26communities around shared medical
19:29conditions, diagnosis, treatment
19:31experience and knowledge. Her memoir is
19:34a biosocial act according to her because
19:37now the experience that she has had of
19:41her struggle with the battling of the
19:44cancer she doesn't want to contain it
19:47within herself. She not only wants to
19:50talk about the struggle that she faced
19:53but also more than that about how
19:57you know she wants to give it back to
19:58the society. So uh that is what is
20:03important in in biosociality.
20:07The third memoir that I am taking up for
20:10discussion is Lisa Ray's Close to the
20:13Bone. It is written by Lisa Ray who's a
20:16model actor and it narrates her battle
20:19with multiple myoma a rare form of blood
20:23cancer diagnosed in 2009. Now the memoir
20:29if you see challenges conventional
20:31narratives of illness by presenting
20:34vulnerability, fear and resilience all
20:38together rather than portraying recovery
20:40as a simple triumph. Now I was talking
20:44about the restitution story uh when I
20:47was discussing illness narratives. This
20:50is not one of them altogether. In fact,
20:53it's it falls perhaps in the quest uh
20:56narrative as well where the entire
20:59struggle was not just towards survival,
21:04not just towards combating cancer but
21:06more than that. Uh so the book is about
21:10how this has reshaped her identity, body
21:14image, relationships and public life
21:17especially for a celebrity figure in the
21:20media spotlight. So the memoir
21:22interrogates the specific pressures of
21:25being a woman in public eye, a model no
21:28less facing a disease that attacks the
21:31body from within. So let us look at how
21:34Ry theorizes this experience. I mean
21:36there is an important term cancer time
21:41which Nancy Miller coined and she
21:44defines it as the time spent in
21:47diagnosis
21:49staging prognosis protocol where the
21:52only future fixed chronology is that of
21:55treatment sessions. Nia writes about it
21:57in great detail for Lisa Ray. You will
22:00find that uh whose life has been
22:04spectacularly organized around public
22:06performance, stage shows, modeling
22:09shoots and glamorous parties. This
22:11collision between the performing body
22:13and the sick body is particularly acute.
22:17She speaks of her stage performances,
22:20her modeling, and the social circuit
22:22where she's always on the show as a
22:25glamorous dolllike figure. So Rey talks
22:29about it in that sense where she's
22:31always at display. But then comes the
22:34illness and with it a kind of a
22:37liberation. Ry writes, "It was a vital
22:40shock of oxygen. This idea that it was
22:43my individuality that was sacred, not
22:46fitting into an arbitrary standard of
22:48beauty." This is a powerful
22:50reorientation. The body that has been
22:53instrumentalized to sell fashion, embody
22:56ideals and perform femininity is a
22:59reclaimed as a site of individual
23:01experience. The cosmetic body becomes
23:04something else completely. So something
23:07that was a focus on appearance and
23:11public consumption of star good looks
23:15now just is uh rediscovering the person
23:21behind that cosmetic body.
23:24So when you uh think of cosmetic body a
23:29term Ner coined he says cosmetic body is
23:32my shorthand term for the stars body
23:35that foregrounds the looks style and
23:38fashion of the star over anything else.
23:41So when he discusses cosmetic body, he
23:43uses that term to define the actors,
23:47models or all those people who are in
23:49the celebrity uh status their bodies.
23:52And uh when you uh further look into say
23:57uh Yuvra's narrative, his athletic
24:00physique or Kala's Bollywood glamour or
24:03Ray's modeling career as well as her
24:06acting career, these bodies you will
24:08find are carefully curated, performed
24:11and consumed. But illness ruptures this.
24:15Drawing on Richard Dyier's concept of
24:18heavenly bodies. The idea that stars
24:21embody cultural ideas and fantasies, we
24:24can see that cancer forces a descent
24:26from the heavenly to the corporeal. The
24:29body becomes medicalized. It is now
24:32defined by its pathology, by scans, by
24:35treatment protocols, and by its capacity
24:38or incapacity to function. Yet
24:41crucially, the memoirs do not let this
24:44be the final word. All three narratives
24:47reclaim the body by transforming it from
24:50an object of cosmetic display into a
24:53site of experience, resilience, and
24:55self-standing. The body is just not a
24:58thing that happened to them. It becomes
25:00a text they read and rewrite. This
25:03reclamation leads us to a final
25:06theoretical concept. One that
25:08synthesizes all the three memoirs term
25:11professor Nyer uses in which he says
25:14these disease memoirs may be termed as
25:18celebrity somatraphy extending the
25:20original meaning of the term
25:22somatography which refers to body's
25:24visualization and memoir by people with
25:27disabilities. In this case, the focus is
25:31that of celebrities. What celebrity
25:35somatography does is that it shifts from
25:38the madeup fashioned body of the star to
25:41what Nyer calls raw material, a
25:44pathologized corporality. In other
25:47words, the memoir strips away from the
25:50performance and gives us the body
25:52beneath the real vulnerable sick
25:55surviving body. Crucially, the celebrity
25:58somatography also foregrounds the
26:01ontologically real. It contrasts the
26:04authentic sick self with the performing
26:06celebrity self. The on-screen roles, the
26:09public persona, and the manufactured
26:12image are all of what is placed in
26:14tension with the raw expertise of
26:16illness. And this tension is where the
26:19memoir's cultural and political work
26:22occurs. These texts just say, "I was not
26:26just a face, a body, a performance. I'm
26:29a person and people get sick." And
26:32sickness is real in a way that celebrity
26:34is not. It conveys celebrity
26:36vulnerability as a way to create a more
26:39authentic, relatable image. Others might
26:42view it as a curated performance.
26:45Finally, when you go through all these
26:48three texts, you find that the
26:50celebrities who have written about their
26:52own illness is primarily to change the
26:55public health knowledge, attitude,
26:58behavior and status outcome. That is
27:00what Hoffman talks about and this is
27:02what we see in terms of also reading
27:05these three memoirs that we have
27:08analyzed right now. Their stories of
27:10survival and treatment can help people
27:14who are seeking
27:16uh some kind of motivation or some kind
27:19of behavioral change or awareness or you
27:24know if it can happen to him or it can
27:27happen to her why not me. So you know
27:29it's a the the story of survival is
27:32creating a platform for also being a
27:35motivational story and uh a kind of a
27:38solidarity narrative so to say that is
27:41why it is shared and towards the end of
27:43their outcomes whether it is Singh
27:45Liisare or Banisha Kerala they claim
27:48they have found a new appreciation for
27:50life just like uh you know uh how it
27:53happens when you survive a a chronic
27:56illness or a very big major blow on your
27:59life. That is they say that they
28:02discover the new side of their life in
28:05all three memoirs. This is a common
28:07pattern that you will find that there is
28:09a different kind of thankfulness towards
28:11life and these narrative also help
28:13reduce stigma and silence surrounding
28:17cancer particularly in societies where
28:19illness is often associated with fear or
28:22social withdrawal.
28:24I think the is where I will conclude.
28:26These are my works cited. In the next
28:28lecture, I will talk about how a one
28:31ages into disability. Till then, thank
28:34you.