Full transcript
0:17Hello everyone, welcome to the lecture
0:19nine of our course introduction to
0:20medical humanities. In the last lecture,
0:23we discussed illness as metaphor where
0:28we thought about different ways in which
0:31the linguistic scape of India defines
0:36what is illness.
0:39In the course of language,
0:42we know that the most important
0:46aspect of our knowing is the language of
0:49the law.
0:51Therefore, in today's lecture, I take up
0:55major signposts of medical humanities in
0:58India. I discuss six landmark laws that
1:03have shaped how we see medical science
1:07today. Let us get it from here. We uh
1:10begin with introduction, a quick view of
1:14what I will be doing today. Here is an
1:16overview, but I will not put much of
1:18time here. I will straight away come to
1:20what I'm going to say. Now in the course
1:23of medical humanities and laws in India,
1:27we begin with an with a premise that
1:30laws have affected society and social
1:34discourses have led to the change of the
1:37law. Now this is the basic principle in
1:40which society functions within the scope
1:44of medical humanities. You will see so
1:46many amendments being made because
1:49society wanted. Now it's a very uh
1:52difficult situation as to say who
1:54affects the whom but there has been a
1:57tandem with the societal change and the
2:00law and that is what we are going to
2:02talk about here. Now what is the
2:06connection between medical humanities
2:08and law? Think about this in in a way.
2:12Now every time you visit a doctor what
2:15happens? There is a doctor sitting this
2:17side and there is a patient sitting this
2:19side.
2:21This and other. Now do you think it is
2:25just the patient doctor space that is
2:27being shared? No.
2:30There is an ethical space as well. That
2:33distance between the two it is also
2:36marked with social space. And very often
2:39we also come across a legal framework
2:42that you can assign to this situation of
2:47patient being seen by the doctor.
2:50In India, several landmark legislation
2:54serve as signpost. These laws have
2:57addressed reproductive rights, epidemic
3:00control, elderly care, child protection,
3:04disability rights, and mental health.
3:06together. What do they do? If you
3:09remember, I talked about health as a
3:12right, as a human right when I was
3:14talking about the objectives of WH in
3:17the context of India too. These laws
3:20have assigned themselves to this vision
3:22and mission.
3:25Quickly take a look at this table. In
3:28fact, this is this table is the spine of
3:30today's lecture. You what does it tell
3:33you? The first is that of the timeline.
3:38The timeline where we discuss the 1897
3:42epidemics act. That's the only colonial
3:45act I will be discussing. Following
3:48which I will take up medical termination
3:50of pregnancy act 1971.
3:53Move on to maintenance and welfare of
3:55parents and senior citizens act 2007.
3:58Juvenile justice act 2015. rights of
4:02person with disability act 2016 and
4:04finally my own very very favorite uh
4:08mental health care act 2017 because I
4:10think within the scope of law this
4:13changed the whole way we thought of uh
4:16mental health issues uh it in fact uh
4:20set the trend of breaking away from the
4:23stigma sphere in which mental health was
4:26caught. If you look at the whole
4:28legislation these six laws according to
4:30the model of care you find that it has
4:33shifted from being coercive and state
4:35controlled to right based and patient
4:37centered. So you find that there is
4:41immense amount of shift that has
4:43happened. Now it is seen that health is
4:46a human right and the laws are made in
4:50which the patient is primary. So how do
4:54you go about it? From this table you
4:57remember one thing. What is that? That
5:00Indian healthcare legislation has
5:02progressively moved from a model of
5:05state coercion and family authority
5:07towards one of individual rights,
5:11dignity and autonomy. Though we see that
5:14a practical implementation continues to
5:17lag behind legislative intent.
5:20This means that the law is there. the
5:23implementation is taking place because I
5:26was quoting so I did use this but if you
5:29look at the ground report you will find
5:31that there is a lot of progressive shift
5:33that is happening.
5:36Let us go to uh epidemics act 1897.
5:40So in the British rule we come across a
5:44devastating bubonic plague outbreak in
5:46Bombay and Pune. In fact, when I will be
5:49taking up literary and cinematic
5:51reflections, I will also discuss
5:53Rajender Singh Bed's short story
5:56quarantine that is written in the
5:59backdrop of the plague. I I remember
6:03translating this particular short story
6:06in English when COVID 2020 hit and there
6:10were so many resonances of how people
6:13felt at that point of time and how we
6:16were feeling then.
6:18If you look at the colonial
6:20administration, it was in panic and so
6:22they passed the epidemics.
6:26They passed the epidemic disease act.
6:29What does this law do? This law gives
6:31the government sweeping powers to
6:33contain epidemic diseases, inspect,
6:36detain, segregate, destroy property all
6:39in the name of public health. There is
6:41no right based provision whatsoever
6:44because it is coercive by design as here
6:48is what I find remarkable. This law I
6:51mean still is in the books and in fact
6:53in 2020 this was amended. However added
6:57protection for healthare workers against
7:00violence which is important but the
7:02fundamental character of the law was
7:05enforcement over rights. And therefore
7:07when we see that this is a classic
7:10example of what medical humanities asks
7:13us to interrogate it says whose interest
7:17does law actually serve. In 1897 it it
7:20was clearly the state but now it is
7:23changing. I mean where we come across
7:26the whole public good versus individual
7:30liberty. This idea actually becomes the
7:33core of its philosophy where individual
7:35liberty is at the center now but earlier
7:38it was only about uh state control on
7:41the name of public good.
7:44Quickly move on to 1971 which is
7:47postindependence era and I take up
7:50medical termination of pregnancy act
7:521971.
7:54Now this is very uh important act that
7:57came out because it it came out with a
8:00background that there were many maternal
8:03mortality that was happening and due to
8:06unsafe abortion. So you come across this
8:11act which you can also say that it was
8:13shaped by eugenics debate population
8:16control and patriarchal norms. So there
8:18are researchers that are discussing this
8:21act in twofold. Some of course are
8:24talking about it in the in the space of
8:26unsafe abortion and maternal mortality
8:29but they are also talking about
8:31population control. What does it say? It
8:34says that up to 20 weeks termination can
8:37happen. Now
8:40this 20 weeks will be decided on the
8:43basis of how much of risk involves to
8:47the health of woman or fetal abnormality
8:51or in the case of rape, incest or
8:53contraceptive failure in a married
8:55woman. Married is important. Now when
9:00you think of this law, what did it do?
9:05It did not shift the
9:09or it did not give the right to abort to
9:13women. This was done by a authority.
9:18This was done by doctor. So the provider
9:22centric from the outset was in such a
9:26way where
9:28whatever be
9:30the stigma persisted and adolescent
9:34access remained complicated by
9:36overlapping laws a tension that has yet
9:38not been resolved. So with reproductive
9:41rights we see a story of slow
9:43incremental progress real gains but
9:47persistent structural barriers. Let us
9:49shift to a different kind of
9:51vulnerability. The vulnerability of old
9:54age. So when you think of medical
9:59termination pregnancy act 2021, it
10:02changed the whole situation. What does
10:06this mean? That in 2021 a very
10:09progressive law or a very progressive
10:12amendment was made to original 1971 act.
10:17In this the gastational limit was
10:19exceeded to 24 weeks and it included
10:24rape survivors, minors, widows,
10:26divorces, mentally ill women and
10:29humanitarian emergencies. This was quite
10:33an extension because earlier it was 20
10:36weeks, now it became 24 weeks. 1 month
10:40is a lot of time. So uh the gastational
10:43limit extension was a very progressive
10:46move. Additionally, beyond 24 weeks,
10:50state medical board may still permit for
10:53severe fetal abnormalities. This was
10:55again something which was a very welcome
10:58change. This had to be done with the
11:01second medical opinion being removed up
11:03for the 20 weeks. And what it did it
11:06primarily reduced the delay and also
11:09cost. Now if you look at this whole
11:14amendment you find that the the
11:18contraceptive failure ground extended to
11:20any women not just married was the most
11:24progressive law because at the same time
11:27Roi Wade was upturned and India was seen
11:31uh in direct contrast to USA where India
11:35had made such a uh progressive shift in
11:38medical termination of pregnancy
11:39amendment act and led women a lot of
11:43autonomy when it came to their
11:44reproductive rights. So confidentiality
11:47was strengthened and identity protected
11:49except by court order. So you still find
11:53I mean some kind of gap there is stigma
11:56but still on legally and for women who
12:01were in dire need of it was a
12:03progressive move.
12:06The second uh
12:08act that I want to discuss is
12:10maintenance and welfare of parents and
12:12senior citizens act 2007.
12:15And why do you think it is important in
12:17the context of India? It is just
12:19important in the context of anyone. But
12:21in the context of India, it becomes all
12:23the more important. Why? Because we are
12:25a community-based living. You will know
12:28what your neighbors are doing. We are we
12:31come from system of families where joint
12:33families existed. uh where uh we stay
12:36with our parents. So in that sense what
12:39is it why did law had to intervene
12:42because there was so much of uh
12:45negligence that was happening. So the
12:48maintenance and welfare of parents and
12:50senior citizens act of 2007 why was it
12:54needed is the first question. It was
12:56needed because India was changing
12:58rapidly. urbanization, migration and
13:01nuclear families. All of these were
13:04weakening the traditional joint family
13:06structure and had historically been the
13:08primary source of care for elderly
13:10persons. And what was filling that
13:12vacuum? In many cases, nothing. Elder
13:16neglect was rising and the law responded
13:19by making the maintenance of parents a
13:21legal obligation. District level
13:23tribunals were established and
13:26abandonment was made a punishable
13:28offense.
13:29Old age homes were mandated in every
13:31district. But the implementation
13:34still we find it a little weak. But
13:38we see that this law focuses on
13:41financial maintenance, not holistic
13:44well-being. Notice how this law sits
13:47with what we call the welfare era on our
13:50table. The state is stepping in where
13:53families fail but it is not still the
13:57fully right based framework. The
14:00individual elder is not yet the
14:02rightbearing subject at the center of
14:04the law. And therefore we think of this
14:09whole situation this whole act emerging
14:12more clearly as we move further in the
14:15timeline.
14:18Juvenile justice uh is the third law
14:21that we should be discussing today. And
14:23in this juvenile justice act, this was
14:26shaped by a very historical uh moment.
14:30The public outrage that happened uh in
14:332012 after the Nirha or the Delhi gang
14:36rape case in which one of the accused
14:39was a juvenile. The law defines two
14:41categories. children in conflict with
14:44the law and children in need of care and
14:47protection. One of its most contested
14:50provisions is that juveniles between 16
14:52and 18 years of age accused of heous
14:55offenses can now be tried as adults
14:58after assessment by a juvenile justice
15:00board. This provision raises profound
15:02questions that sit right at the
15:04intersection of law and medical
15:06humanities. What do we know about
15:08adolescent brain development? At what
15:11age does a young person truly understand
15:14the consequence of their actions? Is
15:16punishment or rehabilitation more
15:19effective and more just? The law also
15:22has important implications for
15:24reproductive health. overlapping laws
15:27like the protection of child from sexual
15:29offenses act complicate adolescent
15:32access to reproductive health care in
15:33significant ways creating a gap that
15:36connects directly back to what we
15:38discussed about the medical termination
15:39of pregnancy act.
15:42Now we see that the juvenile justice act
15:46grapples with the rights of children in
15:48the justice system. Our next act that we
15:51discuss is much broader more affirmative
15:53approach to rights for an entirely
15:56different group. Let us look at now
15:58rights of persons with disabilities act
16:012016.
16:02If you look at this particular act, this
16:05was replaced by the 1995
16:09act. the 1995 act that got changed into
16:14right of persons with disabilities act
16:17and it aligned itself with the United
16:19Nations conventions on the right of
16:22persons with disabilities. So again um
16:24the emphasis was that anyone even a
16:29person living with disability had the
16:31right to good health and therefore the
16:35welfare based model was changed to right
16:37based model. The criterias for
16:40disability also were increased from 7 to
16:4421. You can see on your screen
16:48it included then acid attack survivors,
16:51Parkinson disease, thalismia,
16:53hemophilia,
16:55cickle cell disease and many others. So
16:58you find that in not only the range of
17:02what was what you can call disabled was
17:05increased but the cre provisions also
17:07were changed. What were some of the
17:09changes? 5% reservation in government
17:12jobs and higher education. Free
17:14education for children with benchmark
17:16disabilities up to age 18. Limited
17:19guardianship which means that they
17:21preserve legal capacity and autonomy and
17:24penalty for right. Somebody who is not
17:26following there was a penalty.
17:28However, we still come across cases in
17:32which stigma, rural access gap and
17:35fragmented services hinder the
17:37implementation which means that there
17:40has been guidelines about
17:41infrastructural changes that allows
17:45accessibility to anyone who is uh
17:48disabled. But in I mean in in India
17:53infrastructure is a major issue. So you
17:56cannot really guarantee. So while there
17:59is a law the implementation finds itself
18:03struggling in the absence of right kind
18:06of infrastructure number one and
18:09societal perception number two. The core
18:12shift again is from the medical deficit
18:15model to social right based model. Which
18:18means that even if there is a physical
18:21disability, it should not happen that
18:24somebody is not having a basic human
18:28right to live in a state of well-being.
18:33This is uh the most uh iconic act as I
18:37said earlier also which is called the
18:39mental healthcare act 2017. and it
18:42replaced the the 1987 act and again uh
18:46it got into its spectrum the right based
18:50approach and aligned it with United
18:52Nations conventions on the rights of
18:54persons with disabilities and world
18:56health organization standards. So if you
18:58look at uh this particular act you will
19:01find that this act the 2017 act is fully
19:05rightsbased aligned with international
19:08standards. Every person now has the
19:11right to access government mental health
19:14care. What does this means? That
19:17patients can make advanced directives.
19:20Advanced directives means that they can
19:22appoint a nominated representative.
19:25In this patients specify treatment
19:29preferences and have the decision making
19:32support like not only they are making
19:35decisions but how they will respond to a
19:38particular kind of clinical
19:39prescription. All this is part of uh
19:43their rights. It decriminalizes attempt
19:47to suicide. I mean under the old section
19:50309 of the Indian Penal Code, a person
19:53who survived a suicide attempt could be
19:55prosecuted. Think about that for a
19:58moment. The 2017 act says this person is
20:02under severe stress, needs care, not
20:05punishment. The act also bans
20:08electrocomvulsive therapy without
20:10anesthesia, bans it for minors, mandates
20:13mental health review boards in every
20:14state and requires insurance parity. Now
20:18this is a very remarkable document in my
20:21opinion and even medical humanities
20:23recognizes this as a major shift and you
20:26will find so many reflections of this
20:29particular act in films that I will
20:30discuss later on. If you look at this a
20:34little more, what it did, it specially
20:37safeguards children and adolescent. Now
20:41you know we are living in a very
20:43difficult or very different time so to
20:46say where there are so many inputs. In
20:49that sense this particular act
20:51safeguards children and adolescent
20:54because they are not completely mature
20:56enough to understand what is happening
20:59uh when something is happening to their
21:02mind. Uh and when I say this does not
21:05only mean clinically but also in terms
21:07of stress and anxiety.
21:10This uh also uh means that clinicians
21:13face what the literature calls moral
21:15injury. the distress of knowing what the
21:18law requires and being unable to deliver
21:21it. When you have one psychiatrist for
21:24several hundreds and thousands of
21:26people, the gap between the law promise
21:29and what can be delivered is enormous.
21:32And therefore, the stigma, the oldest
21:35and most persistent enemy of mental
21:37health care continues to undermine
21:39implementation at every level. So we
21:42have you know we have to think about a
21:45situation an awareness and all these
21:49stories and films we come across
21:51actually
21:53help us in being one of the sort of
21:57agents uh to
22:01address the social stigma that is around
22:03mental health care. Now that we have uh
22:06addressed
22:08all the six acts, let us come to what I
22:11called the ethical dimension across the
22:13legislation. Now if you look at the
22:17whole situation where a patient doctor
22:19communication is taking place. I did say
22:21that it is also ethical space. It is a
22:24legal space and it is a social space.
22:27How does ethics blend with the legal
22:30aspect? You find that it is autonomy
22:33versus authority. What is the right of
22:35the patient? Whereas what how does the
22:39law come into picture? So it is the
22:42provider and parental authority that
22:44continues to limit patient and uh
22:46adolescent autonomy. The second is
22:49between individual versus family. Again
22:52right based laws restrict surrogate
22:54family decision-m creating cultural
22:57tension. The third is about stigma.
23:00Again it persists around mental health,
23:02disability and reproductive rights
23:04context. All these laws that I have
23:07discussed today the six all of them I
23:09mean they have been uh very instrumental
23:12and I just discussed one colonial act
23:14only to make you show the arc that has
23:18moved uh from the state control to right
23:21based
23:23state control to right based approach
23:25that we are into now. the moral injury
23:27part which in which clinicians face
23:30distrust when legal mandates exceed
23:33available resources. So in the absence
23:36of resources how how does a patient be
23:40taken care of? This is also something
23:43that the you know the law uh takes into
23:47consideration because there is law but
23:49how do you do it and then we also think
23:53of the provider centric culture because
23:55medical termination of pregnancy act
23:57amendments have not fully shifted the
23:59power to women. The autonomy still lies
24:02with the family, lies with others and
24:05not just the woman who is the person who
24:09should be making the reproductive uh
24:12choice. And finally, when you think of
24:15the epidemics act, it still embodies
24:18coercive governance where you think of
24:21it uh in the stark contrast to newer
24:24rights affirming. So it it was only in
24:27COVID 19 2020 that the shift took place
24:32in terms of its change but otherwise it
24:34was very much there was no need. So when
24:37you think about ethical dimension, law
24:39does not exist independent of society.
24:43But there is an ethical dimension to it
24:46is also something that we have to take
24:48care of. And when you start analyzing
24:50the text, the literary and the cinematic
24:52text that we will do, we will also come
24:54across this aspect.
24:57In uh in conclusion, I can say that all
25:00these six acts trace a clear arc. So
25:05from colonial coercion to paternalism to
25:09welfare to right based care. So the laws
25:12have shifted in that arc is something
25:15that I wanted to point out. Each act
25:18mark society's reckoning with the
25:20marginalized group whether it is women,
25:22the elderly, the children, the person
25:24with disabilities or the mental health.
25:27So I picked up different domains uh or
25:30different categories of people existing
25:33so that I can talk about law in
25:36different directions. uh the right based
25:39framework now dominates. But of course
25:42all these laws have to be implemented in
25:44society. And we find that despite the
25:46best of intent still the implementation
25:49is slightly lacking behind in which the
25:52cinematic and cultural narratives or any
25:54kind of narratives storytelling plays a
25:57vital role. And hence I discuss these
25:59law as well before discussing the
26:02narratives that I will be discussing in
26:04later course of time. And for health
26:07care professionals, knowledge of these
26:08laws is foundational to becoming
26:11ethical, compassionate and have a lawful
26:14practice. Way forward is policy reform,
26:17legal literacy, interdisciplinary
26:19research, genuine integration of medical
26:22humanities in medical education. So
26:25there are lot of shifts that are
26:27happening and these six laws I just
26:29wanted you to know so that it's easier
26:32for you to trace
26:36the historical background when I discuss
26:39the reflections of these in the literary
26:41text. As a final uh lecture of this
26:44module in the next lecture I will
26:47discuss how covid-19
26:50changed the gaze in which we looked at
26:52medical humanities. On that note, thank
26:54you so much. I'll I'll see you in the
26:56next lecture.