Full transcript
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0:09[music]
0:17Hello and welcome everyone to my NPTL
0:19course introduction to medical
0:21humanities. This is lecture 33 and we
0:23are almost in the middle of week seven.
0:26As we are approaching to the closure of
0:28our course, I I'm going to talk about
0:30something which is very important uh in
0:34the sense that the social meaning of
0:38this disease dominates all other kinds
0:41of meaning. What is that? It is HIV
0:44AIDS. And in this lecture what I'm going
0:47to destigmatize I'm attempting to
0:49destigmatize HIV AIDS through Hindi
0:52cinema with respect to two films I have
0:56chosen for analysis. One is my brother
0:59Nikl and the other one is firming.
1:03Before we go ahead, a quick overview. I
1:05am going to use Susan Sag's uh metaphor
1:09of illness as a theoretical foundation.
1:13Follow it up with two epidemics of HIV
1:16AIDS which is significance versus
1:19biology and the socioultural context of
1:24HIV AIDS in India. How does stigma
1:27associate itself with this disease?
1:30categorizing stigma and trying to
1:32discuss how enacted perceive and
1:34vicarious takes place and then close
1:38reading of the two texts female came
1:40which came out in 2004 and my brother
1:43Nikl which came out in 2005 and finally
1:47end it up with the entertainment
1:49education framework
1:53before I begin it's important to discuss
1:56uh with respect to uh HIV and AIDS
2:00The difference between disease and
2:02illness. When we talk about disease, we
2:06see it as a biological or clinical
2:10pathology.
2:12But when it comes to illness, this is
2:15the subjective lived experience of the
2:18person.
2:20for reading HIV AIDS narratives the
2:24understanding of the difference between
2:26disease and illness becomes prominent to
2:30how we are going to analyze.
2:33Susan Sac talks about it as dual
2:36citizenship in which she says that a
2:39person whosoever
2:42operates within two dimensions or two
2:46citizenships. One is the kingdom of well
2:51and the other is the kingdom of the
2:53sick.
2:55So there is never one citizenship in
2:57which one is dwelling. There is always
3:00this duel that parallelly works. Illness
3:06creates a rupture in a taken forranted
3:09relationship to the world wherein the
3:13body becomes a strange alien and no
3:16longer trustworthy. That is what illness
3:19does to you. Because when a disease like
3:23AIDS or HIV happen, the body which was
3:26celebrated becomes a body of criticism
3:31and it starts experiencing
3:34the disease in a very different way.
3:39Usually when we talk about disease we
3:42use the military metaphor
3:44and
3:46we talk about illness as invasion. So
3:49there is some attack that has happened
3:51and pathogens are alien invaders and
3:55body is the battlefield. So it's a war
3:57zone. Treatment is like bombardment
4:03and
4:04aggressive clinical interventions are
4:07metaphorized as weapons.
4:11But in that whole
4:14scenario,
4:16the body is the one that is experiencing
4:20and if it is HIV AIDS
4:24because there is a sexual component to
4:27it that is judged by the public as
4:30punishment for perceived perversion.
4:35You have transgressed the boundary of
4:38what was socially sanctioned to you as
4:41moral sexual desire and therefore this
4:45disease is a punishment. This disease is
4:48a outcome of that transgression. That is
4:51what sac says there are two epidemics in
4:54HIV. When when HIV happens it's not just
4:58one, it's two. And what are they two?
5:00Paula Trisher talks about it. She says
5:03the biio medical epidemic and the
5:06epidemic of meaning or signification
5:10meaning one that you are dealing with it
5:14biologically. It's a lethal disease
5:16transmissible.
5:18Your body knows that this has happened
5:19to you. You test positive. So there is a
5:22biomedical equation to it.
5:25But the symbolic meaning is worse or
5:30maybe
5:32uh quite equal to the biomedical
5:35epidemic because it is no less it is
5:38also transmittive. You can also track
5:40that it's also lethal. So the symbolic
5:44epidemic also
5:48is
5:49something that becomes
5:53crucial to how we perceive the
5:55narratives around AIDS.
5:59In the socioultural context of HIV AIDS
6:02in India, we find that by the mid 2000s,
6:07the HIV positive population in India
6:09crossed 2.21 21 million mark and right
6:13now India ranks third globally in total
6:17HIV prevalence.
6:20So we are a country of many HIV patients
6:24but we are also a country where stigma
6:27associated with HIV is no less. What
6:30does it do? It prevents the uptake of
6:34voluntary counseling and testing.
6:37So you have to be tested, you have to be
6:41counseledled.
6:43These are things people are usually
6:46apprehensive about. Why? Because the
6:49fear of status disclosure leads to
6:52delayed health seeking. So you are
6:55afraid what if I test positive the best
6:57of people because the transmission
7:01may or may not be because of the sexual
7:03relations.
7:05But the moment HIV AIDS will happen
7:09that's the only connotation society
7:11perceives. So stigma associated with HIV
7:15AIDS it's grave
7:19constantly we find the negative attitude
7:21towards it and uh it hasn't declined
7:25significantly since the early '9s when
7:30sexually transmitted disease
7:33particularly HIV AIDS
7:37became a drawing room conversation
7:40became a kind of a conversation that
7:41started happening in society.
7:44Three ways in which we categorize this
7:46stigma.
7:48Enacted what happens? A person loses
7:51job, forced separate utensils or refusal
7:54of medical treatment.
7:57And in the institutional practices, they
7:59label hospital beds as high risk or
8:02denying surgery. The perceived stigma
8:05where there is fear and anticipation of
8:09discrimination. If I test positive
8:13then what will people think? They will
8:16discriminate and this triggers
8:18selfisolation, protective secrecy and a
8:22huge blow on the quality of life.
8:26Vicarious the stories of stigma when you
8:29hear them about others discrimination
8:32reinforces one's own fear. What if
8:36that's the narrative that goes in your
8:38head and patience accepting society's
8:41spoiled identity and feeling of moral
8:44dirt you feel that this is not the right
8:46thing this is not something that should
8:48exist in society
8:50and that's why you read a film like firm
8:53mileni in 2004 and I had not seen any
8:57film I think in my opinion before which
9:02discusses
9:03uh the stigma around uh HIV AIDS. So
9:08it's a poant Hindi language film
9:10directed by Raati
9:12and in this film the major focus is
9:18social stigma surrounding HIV AIDS in
9:20India. It's the story of Tamana Sahani,
9:24a successful woman who tests HIV
9:28positive one fine day. And the moment
9:32she tests positive, there is huge
9:35discrimination
9:37she faces to the extent that she is
9:40wrongfully terminated from her work.
9:44She seeks legal help of Tarun Arnand and
9:47fights her case. That's the whole story
9:49in nutshell.
9:52So
9:54the normal patient construct
9:58is
10:00hindered and how I will show you if you
10:03look at Tamana's professional identity
10:05in this picture on your screen she's
10:08being applauded for her work achievement
10:10so there is a gentleman who's kind of
10:11clapping for her she is presented as
10:15successful hardworking individual
10:18but through her
10:21The film also depicts that somebody who
10:24is very productive in society, he or she
10:28tests HIV positive, how does that
10:31productivity
10:33doesn't add
10:35to any of the narrative that are built
10:37around the stigma of the disease she now
10:40has.
10:42And you find that
10:45the film challenges the taboo myth
10:49because she shows that infection occurs
10:52through a single heterosexual encounter.
10:55The film positions the normal person as
10:57anyone vulnerable to the virus. So she
11:00has met
11:03uh this gentleman and uh then after that
11:07she has been diagnosed with HIV
11:10positive. So
11:13this is also an episode which says that
11:16it can happen to anybody that kind of a
11:18narrative. So it breaks the myth that
11:20people who are socially aberant become
11:23HIV positive. So even one encounter and
11:25it might happen something like that. Um
11:28the film talks about
11:31the stigma is very complex and very
11:35layered. Say for example, she's
11:36dismissed from her job because she's HIV
11:39positive and the employer believes this
11:41is to be a sign of perversion or immoral
11:45character. So the film shows only one
11:48encounter but the
11:51society perceives her to be a woman with
11:54no u character or someone who in certain
11:58sense pervert. So uh you see the image
12:02here people are talking about her
12:06and then in the second uh the doctor is
12:09informing Tarun about HIV myths. So the
12:13film portrays an HIV positive person's
12:16loneliness as friends and acquaintances
12:19distance themselves from her. They're
12:21all gone. So even if you look at this
12:24image, there is a sense of why have you
12:28come here? What is your role? Why do you
12:31need you know that kind of a she's so
12:33hesitant to walk into this space. So
12:35even Tarun the educated lawyer that he
12:38is who's fighting uh Tamana's case he
12:41doesn't know and he rushes for a medical
12:44checkup right after speaking with her
12:46for fear of catching the virus and that
12:48is how the doctor is explaining that it
12:50is not like that it doesn't it doesn't
12:52spread by touching and uh speaking
12:56and the narrative works as intervention
12:59for activism and dstigmatization how
13:02because they challenge moral judgment a
13:05Handshake evoking hope. So Tarun touches
13:07her hand
13:09clearly indicating that HIV doesn't
13:12spread by touching.
13:15The second is how there is this fight
13:20both enacted and vicarious stigma. So
13:24there is also a hug that's happening
13:26between Tamana and her sister. And these
13:30are
13:32few of the many scenes that are there in
13:35the film where you find that handshake,
13:37embrace,
13:40drinking water from the same vessel. All
13:42are
13:44shown just to showcase that
13:49the myth around HIV and AIDS should be
13:53debunked.
13:55The second film that I am taking for
13:57analysis is My Brother Nikil. A
14:00beautiful uh film directed by Onir and
14:04released in 2005.
14:07The film is set in Goa 1987 to 1994 that
14:11period some time and it follows the
14:14journey of Nikil Kapoor who is a state
14:17level swimming champion and whose life
14:21turns upside down the moment he's
14:24diagnosed as HIV positive
14:27and
14:28once that happens there is so much of
14:31social ostracism and forced isolation
14:36that he's subjected to and amidst
14:39abandonment by the community. The story
14:42centers on the courage Nikil shows, the
14:46resilience Nikil shows in not only
14:49combating the disease but also
14:53the way he handles how society is
14:56perceiving him definitely by the support
14:59of his sister and friends. So the sister
15:02is here. So he's a dispossessed champion
15:05in the sense that he's a state level I
15:08mean swimming champion and
15:12the first scene if you see that the
15:16moment Nikl jumps into the swimming pool
15:20everybody else is going
15:22from all corners they are running away
15:25because they are afraid that if they
15:28will be also in the same pool maybe they
15:30will also test uh HIV positive.
15:34And what does it do? A confident nikl
15:37post diagnosis becomes fearful, dejected
15:41and isolated because he's stripped of
15:43his identity. See here even the father
15:46is not ready to accept. It's only the
15:49sister who's accepting. And what we find
15:52is
15:54nikl who's asked to leave the house. the
15:57family also abandons
16:00the stigma associated with HIV AIDS is
16:03so high and rigid.
16:06Therefore to combat that stigma there is
16:09a reumanization that has to happen and
16:13that is what these two films indicate.
16:15They are well aware of the fact that HIV
16:19AIDS is not something that can be cured
16:23but stigma associated with it can make
16:26the life miserable of the person who has
16:28tested positive is something that one
16:31has to be sensitized or one has to be
16:33sensitive to and that is what this film
16:36is all about. So there is a
16:38counterdiscursive resistance in the
16:40sense that through intimate storytelling
16:43and testimonial narration HIV AIDS is
16:46reframed as a condition demanding care
16:49not condemnation.
16:51So if you look at this particular image
16:53on your screen, Nikl's sister fights for
16:56him by raising awareness of HIV. She's
16:59showing free Nikil. Free from what? Free
17:03from your stigma. free from what you are
17:06perceiving of him, free from what is
17:09binding him.
17:11He's not responsible for that.
17:14And his friends also stick posters to
17:17raise awareness around HIV.
17:20And the family finally comes together.
17:23The father accepts that he has to stand
17:27in support of his son. The family care
17:29network that I spoke about earlier has
17:32to be in place and therefore the gradual
17:34transformation of the father and the
17:37unwavering support of Anamika Nikl's
17:39sister function as act of resistance
17:42against dominant stigma narratives. So
17:46the family becomes the counterpublic
17:48space where dignity and recognition are
17:52restored. So
17:55if we compare both infirm you find a
17:59corporate discrimination and courtroom
18:02resistance. So it's very external
18:05outside
18:07in
18:09my brother Nikil primarily surveillance
18:11and forced isolation.
18:14If you talk about the gendered framing,
18:16it's heterosexual
18:19and in my brother Nikil, it is primarily
18:22queer. So you also see the difference
18:25there in analysis. In modes of
18:27resistance, this adopts towards a
18:30courtroom drama and this employs
18:33testimonial narration
18:35where family solidarity and personal
18:37love
18:39find its way towards solidarity and
18:44build a kind of resistance that empowers
18:47Nikil to combat the social stigma.
18:50Together they reframe HIV AIDS from
18:53moral panic to a matter of human rights,
18:55dignity and relational care. All these
18:58terms I have discussed but what I can
19:00discuss here is the element of human
19:02right. So you remember we discussed that
19:05health is every individual's right in
19:08whatever capacity in whichever way. So
19:12again these two films build on that
19:15framework.
19:18Um quickly I will uh touch upon this
19:21because there are quite a few words that
19:25I have introduced you. Some of you might
19:27already be aware but those of you who
19:29are not maybe you can employ it for
19:31further reading cinema education
19:34infotainment and today I talk about
19:37entertainment education framework. So
19:39one helps in normalizing HIV talk
19:43through popular cinema. Two, supports
19:46mass reach via celebrities to make the
19:49audience connect. Three, facilitates
19:53audience identification with HIV
19:55positive characters. Four, promotes
19:58legal health awareness within an
20:00engaging initiative. And finally,
20:03encourages stigma reduction by modeling
20:06empathy and support. In totality, what
20:09do they do? These films are not just
20:12about entertainment.
20:15You might believe a film is only about
20:17entertainment, entertainment,
20:19entertainment. But in the course of
20:21medical humanities, we don't take that.
20:24All the medical humanities scholars
20:26believe that each narrative
20:29that we pick up has an angle of
20:32education to it. So you analyze any of
20:36the films that we have taken they are
20:38all marking towards what you can call
20:42social sensitization
20:46and at all point of time they align
20:49their narratives to educate.
20:53Finally, in terms of conclusion, we can
20:55say that uh destigmatization is not
20:57merely a health objective but a
21:00humanistic act of restoring humanity to
21:03those whom society has rendered
21:05invisible through stigma. Now because
21:08and why we are talking about it so much
21:10around stigma because stigma is not
21:13scientific.
21:14It's just social and therefore within
21:18the scope of social meaning
21:22it can be rewritten it can be
21:24restructured it can be recconfigured in
21:28the interest of its social well-being
21:32and therefore utilizing the education
21:34entertainment framework contemporary
21:36Hindi cinema embeds critical public
21:39health messages within emotionally
21:42resonant narratives and provides ides a
21:45form of narrative justice. So it if if
21:48it happens in society, it happens in
21:51cinema and literature and if it happens
21:53in literature and cinema, it can also
21:56happen in society. And on that note, I
21:58will end and take up COVID 19 comics in
22:01the next lecture. Thank you so much.