Indian Anthropological Association

Culture and Disability

Author(s): Sameer Chaturvedi
Source: Indian Anthropologist , January – June 2019, Vol. 49, No. 1 (January – June
2019), pp. 67-82
Published by: Indian Anthropological Association

Stable URL: https://www.jstor.org/stable/10.2307/26855092

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 Culture and Disability:
Unheard Voices of Disabled People

Sameer Chaturvedi

Abstract

This paper is an attempt to critically examine the relation between culture

and disability. It is a plea to researchers to examine the voices of the
disabled in the field as an active agent rather than a passive recipient of
cultural notions. The plea is that disabled people can evaluate their life in
all its multi-layeredness which must be tapped by anthropologists. This
theme has not attracted much attention of anthropologists dealing with
disability so far. This paper aims to argue views of the disabled about
themselves and people around them must be privileged by the researcher.
This paper shall highlight studies done by anthropologist on Disability
failed to capture multi-layered perspective of disabled on his life.

Keywords: Disability, karma, culture, personhood, agency, multi-

layeredness

Introduction

Disability studies is an interdisciplinary area that aims at politicising the disabled

identity to confront the marginalization that disabled people are subjected to. It
is benefited largely from anthropological exploration of interaction between
culture and disability that helped in challenging the assumption that being
disabled is abnormal. It gave way to enriching insights on the lives of disabled
people in different cultures. It is argued that marginalization of disabled people
is culturally as well as contextually determined. Further, it was asserted that any
debate regarding situatedness of disabled people must be informed by local
circumstances rather than the global paradigm of activism. It goes well with
anthropological zeal which suggests that the most important thing is to know how
the life of a given individual or a group is construed in a given cultural context.

This paper intends to critique this very assumption which suggests that a
researcher must only focus on grasping how life is organized for the disabled in

SAMEER CHATURVEDI, Research Scholar, Centre for the Study of Social Systems,
School of Social Sciences, Jawaharlal Nehru University, New Delhi - 110067. E mail:
sameerchaturvedi.csss@hotmail.com

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68 CULTURE AND DISABILITY ......

different cultural contexts. It is argued that any researcher must take into account
how the disabled participant themselves recollect their experience of ‘Disability’.

‘Sir ka haath pakad kar chhood ke aa jana zara.’

When Sahil asked his colleague to help him out to go to the desired place within
the school campus, his colleague instead of helping him, asked a student to do
the needful. A visually disabled Sahil elaborated in one of our conversations that
any person with disability meets four kinds of people: (a) the first kind are people
who are sensitive and they lend help because they understand human feelings,
(b) the second set of people comprise those who provide assistance to be noticed
among their peers, (c) the third kind of people are religious and they interpret
religious scriptures to do selfless service. They consider helping the needy or
disabled as part of their religious duty and (d) the fourth are people who construe
the disabled as a burden and do not want to waste their time and energy on them.
Yes, one doesn’t feel good when someone makes you feel left out but this
happens almost daily in the lives of disabled people.

As can be seen in Sahil’s case, his understanding of his life found in his
experiences provided him a lens through which he analysed the relationships
between disabled and nondisabled in a very subtle way. He has presented
complex understanding of this relationship to evaluate reality in all its multi-
layeredness.

Anthropologists in their representation of disability have not gone beyond seeing

disability as a cultural construct that is either oppressed or normalized. In both
these scenarios the disabled are portrayed as passive agents and, in fact, there has
been no attempt by the researchers to understand that around what kind of places
or people the disabled feel comfortable, or the kind of life they want to have or
if they feel that their life is beyond such concepts like oppressed and oppressor
and normal and normalised. There are disabled people who have given accounts
of their suffering, the attitudinal issues they have faced from nondisabled
counterparts.

Available data suggest that narratives of disabled people about their own lives
work to problematise concept such as oppressed or normalized, that is often used
to comprehend the life of the disabled people. As people do go through both good
and bad experiences in their lives that often stem from the relationships the
person is surrounded by. Myriad of events in life give way to different kinds of
emotions that call for a complex understanding of lives of disabled people. So,
anyone interested in taking up disability as a research area must trace the
disableds’ worldview.

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Indian Anthropologist (2019) 49:1, 67-82 69

The way anthropologists go about doing their job so far must be put under
scrutiny because in their representation of reality they often utilize comparative
method to demonstrate life in general in relation to disabled people as a cultural
construct. In some societies it is valued, irrespective of bodily conditions while
in other societies it may be devalued. This kind of research could very well fall
short of capturing the nuanced picture about the life of disabled people. Engaging
directly with disabled people means valuing the agency of disabled people to
evaluate the different events of their lives on multiple registers.

The plea here is to move beyond definitions that often provide fixity to the life
of disabled people to evaluate how people live through their disability. The focus
must be given to an understanding that people acquire from their lives that opens
up possibilities to evaluate life events in multiple ways. The intention here is to
demonstrate limits of anthropological research that fail to capture how
individuals make sense of their life that could go beyond any cultural prescription
on how think or behave. To elaborate it in the context of Indian culture in relation
to disabled people the word ‘culture’ has been classified into three cultural
domains: Common Culture, Popular Culture, and Normalizing Culture. These
would be explained further in the article.

Culture and Disability

Before engaging with the relationship between culture and disability, it is

important to discuss how culture is defined by classical anthropologists. For Sir
Edward Tylor, culture is a complex whole of knowledge, law, art, behaviour and
customs acquired by men as a member of the society (cf. Kroeber and Kluckhohn
1952) whereas Harris defines culture as a socially accepted lifestyle acquired by
a group of people, it aims at reproducing ways of thinking and behaving that goes
well with the values of the society (Harris 1975). Thus, culture is something
which one internalises from the society to reproduce the way of being. Culture
varies from one place to another and also from one group to another.
Anthropological explorations of the relationship between culture and disability
has destabilized dominance of scientific knowledge about disability in particular
as anthropological lens on the one hand takes us beyond bodily restriction
discourse perpetuated by medical science but on the other hand it does not tell us
about how deep understanding and control a disabled person has on his or her
own life.

Discussion about disability and its native understandings highlights that being
disabled is not always, at all places, considered as a personal tragedy (Oliver,
1996). But then how do the disabled people visualise the world s/he is inhabiting?
Do they have a subtle understanding about themselves, their living conditions at
large or do they know how to go about understanding nondisabled/disabled
binary?

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70 CULTURE AND DISABILITY ......

The significance of cultural construction of disability is noted by Benedict

(1934), Edgerton (1967), Groce (1985), Holzer, Vreede and Weight (1999),
Huber (2000; cf. Mehrotra 2013). Each of them argues that through an
understanding of culture, policymakers can better serve disabled people. The
focus of the pioneering studies in the field of anthropology of disability is to see
whether disability is construed negatively or positively. Such understanding has
not provided much information how disabled people themselves evaluate their
daily experience. For example, Talle (1995) discovered that among the Masai,
who are semi-nomadic - living near the borders of Kenya and Tanzania - being
social makes disability irrelevant. Talle claimed that the Masai do not really
conceptualize the disabled worthless. They give importance to communality and
being disabled does not affect their personhood as s/he is viewed as someone
who is capable of becoming parents.

Contrary to this there are societies in which being disabled and disability is
considered in relation with bodily function, which does not give a person scope
of emancipating from the disabled/sick identity. Helandar (1995) saw among the
Huber community of South Somalia that they do not make a distinction between
disease and disability, and try to treat disability as a disease. Disabled people are
viewed as ‘sick people’ and more commonly disabled people tend to be addressed
in terms of the specific disability they have, that tends to shape the notion of
personhood in that community but disabled are not seen as marginalised.

Devlieger (1995) saw among Songye of Zaire a belief that locates human body
in relation with cosmology, for example if twins are born they would be referred
to as superhuman. Among Songye, the type of body a child is born with affects
the notion of personhood in the community. As it is pointed out by Patrick
Devlieger (1995:95): ‘Abnormality is defined in three ways, that is, “ceremonial
children, bad children and faulty children” which further shape their status in
society.

Songye conceptualizes ‘ceremonial children’ as superhuman and they are

believed to have special healing powers. Bad children are supposed to have anti-
world supernatural powers that have direct connections with sorcerers while
faulty children are those who cannot socialize because of their bodily and
cognitive disabilities such as spasticity. They are neither accepted nor rejected
(Barnartt 2010). Comparing the notion of personhood of simple societies to that
of complex societies, Murphy (1995) pushed for a case against the ideology of
individualism which is one of the markers of modern social structure as against
collectivism of simple societies. Murphy argued against the prevailing trend
which places so much importance on physical fitness that furthers the gap
between nondisabled and disabled people like himself and pushes the disabled
into a state of ‘liminality’ (1995:141). Murphy has argued against the prevailing
conditions in modern society that marginalize the disabled. da Sentumbwe (1995)

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Indian Anthropologist (2019) 49:1, 67-82 71

deconstructs inequality to argue gender bias inherent in complex modern society

in Uganda which hinders the opportunity of blind Ugandan women to get sighted
life partners as they are construed as non-productive and, on the other hand, when
it comes to choosing life partners, blind men opt for sighted girls.

Thus, social structure of small-scale societies are seen to largely accommodate

disabled whereas in complex societies the disabled experience marginalization.
The way anthropologists conducted studies in relation with a small-scale society
did not give much scope to individual or his analysis about his life, it only shows
how culture shaped life of individuals. Whereas researches with regard to modern
societies and its disabled members have only showed disabled as a passive
receivers of social ills, not as an active agent who could analyse the existence on
multiple registers.

These studies focus more on how disability is understood within a culture as a

whole and have not given voices of the disabled a central position, in terms of
understanding how the disabled go about making sense of the relationships they
are surrounded with. Karma is a cultural construct (Obeyesekere 2006) which
occupies central position in Hindu belief system, aims to reproduce moral order
that sees disability in a negative light. It is not only in contrast to those who
believe in rights-based approach to disability and seek reorganization of society
to include disabled people but it also undermines agency of the individual whose
life is not restricted to such a formulation. Karmic conceptualization of disability
see it as a suffering which disabled people have to go through as a result of a
misdeeds committed in their past life. Due to this, disabled people have to face
attitudinal issues in terms of abuses in their everyday life. This will be discussed
further in the next section.

The Hindu Dharamasastra made it clear that every individual must lead an ideal
life. It privileges morality and states whosoever indulges in wrongful activities
should be ready to pay the price, as s/he will be born as a disabled in the next life
(Burley 2013). It gives ground for constructing disability negatively in the Hindu
Value system. It is evident reading Ramayana and Mahabharata from the
perspective of a disabled, the famous Hindu epics have discredited disability and
the disabled in general. In both the epics the role of the villain was played by a
disabled. In Ramayana, Manthara, a dwarf woman, was depicted as evil as it was
after her intervention that Rama had to leave Ayodhya. Shakuni, an
orthopedically disabled man, played a crucial role in the battle for kingship
between the Pandavas and the Kauravs (Bhambani 2003, Ghai 2001, 2003;
Mehrotra 2013; Miles 1995). Adding to it, even Hindu Gods like Vishnu and
Krishna can be regarded as someone who have stigmatized the disabled
(Mehrotra 2013).

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72 CULTURE AND DISABILITY ......

In this context a story regarding Krishna’s addressing a hunchback named

Khubja as sundari (beautiful) must be analysed as in term of perpetuating able-
ism. Referring to her, Krishna said that your body may be considered disabled
but your soul is beautiful. As the story unfolds Krishna cured her that is symbolic
of freeing her from the sins committed by her in the past life (Bhambani 2003;
Mehrotra 2013). Also, analysing what masses use to recite at Kartik Purnima is
crucial, in which the Goddess Lakshmi was unable to get married before her elder
sister, who was disabled. Upon being proposed by Vishnu, she suggested that he
should marry her sister. Lord Vishnu refused to marry someone who is disabled
(Bhambhani 2003; Mehrotra 2013). Manifesting the disabled as incapable is very
obvious in these representations. For example, in the Mahabharata, Dhritrashtra
was deprived of his kingship because of his visual disability (Mehrotra 2013).
Religious texts could be looked at as formulating the social discourse of
marginalization regarding disabled. Miles (1995) has noted that Manusmriti
gives freedom to spouse of disabled to make sexual alliances outside the
institution of marriage that alienates the disabled man from his spouse.

For that matter, even Buddhism marginalizes the disabled as the philosophies of
Buddhist religion demand heavy mental activity in terms of meditation which
shows that it gives importance to ‘mind culture and highest mental achievements’
which puts the intellectually disabled at a disadvantage, Miles suggests (1995).
The institutes of Vishnu prove it by listing disabilities with the sinful state in
previous incarnations, for example ‘one who steals a lamp shall be blind, a usurer
will be epileptic; one who consumes dainties alone will be rheumatic’. It advises
not to marry a physically disabled (Jolly 1880, cf. Miles 1995). Humphreys
(1994) shares the same belief and argued that conception of Karma blames
disabled for their living condition in present life by relating their disability to the
actions committed in previous life. In establishing this causal relationship
Humphreys labelled disability as evil (Humphreys 1994).

As mentioned earlier that karmic conception aims at reproducing moral order

which means Karma such as feeding monks, performing rituals, visiting
pilgrimages, indulging in temple construction and leading a disciplined life are
valued as good karma which will ensure disability-free next birth. Also, it is such
belief that paves the way for accommodation of disabled people, but it needs to
be stressed that accommodating the disabled does not mean accepting disability.
There are cases where it leads to exclusionary behaviour towards disabled in
terms of them being made to go through varied kinds of traditional healing
practices as well as modern therapies (Ghai 2015).

In most of the Hindu scriptures ‘being disabled’ is portrayed in a negative light,

it is associated with a very deterministic negative value, a form of absoluteness
to someone’s existence. But it is not necessary that every disabled gives
importance to such understanding. For an anthropologist it is important to note

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Indian Anthropologist (2019) 49:1, 67-82 73

how disabled people negotiate with their life. Life is fluid so should be the
concepts and categorization depicting it. Disabled people do face discrimination
but sociologist/social Anthropologists need to go beyond social exclusion
discourse to evaluate how the disabled go about living their lives.

Karma, Disability, Exclusion and Evidence

This section engages with findings suggesting that there are multiple cultures in
relation to disability in Indian society that I have chosen to name as Common
culture, Popular culture and Normalizing culture. Common culture (WJ
Bennett,1988 denotes shared beliefs and practices that are widespread among the
people. It works to determine attitudes with regard to treating disabled people
with disdain (Shakespeare 2006). Such kind of behaviour has its genesis in seeing
disability as retribution of past Karma. As mentioned previously, it creates a
discourse of viewing disability negatively which is the root cause of
marginalization of the disabled people.

Evidences are huge in number that suggest that exclusion of disabled people in
India is related to karmic causation, people generally see disabled as a misfit in
the society, since seeing disabled people could be a disturbing experience
(Goffman 1963; Hunt [1966]1998). Klasing (2007) substantiates it through
evidences that suggest exclusion of disabled people in Indian society exists
because of the concept of Karma which leads to the disabled being considered as
useless. Case studies from Rajasthan and Andhra Pradesh are discussed to
substantiate how common culture stigmatizes the disabled. These studies show
that how already constructed concepts could limit the imagination of the
researchers that can make the agency of the disabled respondents invisible and
strengthen the tragic discourse regarding disabled people. Few such cases have
been elaborated below.

The behaviour of the family members often shapes the self-concept of the
individual. The need for assistance in their activities of daily living makes them
vulnerable to verbal abuses from immediate caregivers and can lead to self-
stigmatization. Klasing (2007) suggests that the disabled acquire negative
attitude towards themselves through families. For example, a case study of
Chandam Maro, Ramlamma, Ekkama is explained further.

Chandam Maro, a tribal boy, who was blind since birth and hailed from
Adilabaad district of Andhra Pradesh attempted suicide because he was hurt by
the attitude of his mother. On the other hand, parents of Ramlamma of
Visakhapatnam hid from neighbours that they had a mentally disabled child so
that everyday humiliation could be avoided. Ekkama, from Warangal of Andhra
Pradesh, his father was never able to accept the reality that there is a disabled
member in the family. Further, highlighting the pain and agony among parents to

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74 CULTURE AND DISABILITY ......

have a disabled child, Alur (2010) notes that some parents live in a hope for
divine cure of disability that would mark the beginning of fortune in their lives.

Stressing the relationship between Karma, disability and destiny, Ghai (2001)
argues that labels such as bechara (poor, unfortunate) accentuate the victim status
for the disabled and the root of such attitude lies in the cultural conception that
views a disabled as resulting from their own fate and thus beyond redemption.
Destiny is seen as the culprit and disabled people are seen as the victims. As
mentioned earlier if the objective of the research is to reproduce the effects of
karmic conception of disabled then it must not be considered as good research.
This is because an anthropological research must not study disability as a result
of Karma but should aim to touch the life of individuals from whom data is being
gathered.

In the next section some ethnographic insights will be discussed. Following the
anthropological zeal of privileging field view rather than book view, it is argued
that it is not always Karma and destiny that should be blamed for an unfortunate
incident. There are places within Indian society where people associate an
unwanted event in their life to local deities, ghost and witches. Suffering is
constituted not as a personal issue rather than a collective issue. There is no space
given to how s/he understands, negotiates with the events that are considered as
a result of curse.

Karma and Suffering: Interpretation and Practice in Popular Culture

Social anthropologists are trained to trace the ground realities but if they only
focus on concept of Karma and its varied representations, it may lead to distorted
knowledge production in relation with the life of disabled people. Some
anthropologists have worked on how natives make sense of misfortune in an
Indian context. The beauty of a discipline such as anthropology and other social
sciences in general is that they resist attempts at generalizations either on the
basis of textual assumptions or on the basis of common-sense knowledge
(Beteille 1996).

Understanding of cultural contexts holds great significance for anyone who

studies society, as observing specifics can give clear insights about how social
value works. Concept of Karma never works alone in terms of rationalizing the
event. In every city, village and small-town people generally do not see suffering
as a result of their own Karma, past or present but along with extra cosmic factors
that dominate the discussion if any uncalled-for event occurs.

Karma in popular culture (Keyes and Danial, 1983) consist of people who form
their own tradition which is either in contrast with the dominant Hindu culture or
at least varies in the way they interpret the same tradition. Karma alone does not

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Indian Anthropologist (2019) 49:1, 67-82 75

determine life events but extra cosmic factors work side-by-side. If any
mishappening occurs it is attributed to bhoot (ghost), chudail (witches) and
apsaras (fairies). In this regard, Herbert’s field study of Koudru village in South
India is significant. He concludes that people do not use karmic causation for the
‘misfortune’ which they face in their everyday life but they rely on ‘natural
causation’ (Herbert 1983).

It is observed that villagers believed that along with human beings, ghosts, spirits,
apsara, god and goddesses live side-by-side in the village and affect their lives.
People of the village believe that drought and diseases like plague are
manifestations of the anger of gods and goddesses. Inhabitants of the village used
karmic causation as the last resort to rationalize the sufferings of their present life
(Herbert, 1983; Babb 1983) made similar findings in Chhotanagpur.

Kolenda found in Khalapur village in Uttar Pradesh that the use of concepts like
Karma and fate is not just used in the classical sense of achieving salvation by
not indulging in what is considered as bad Karma. The abstract notions of karmic
causation and fate lived alongside local rationalizations of well-being or
misfortune (Kolenda 1964). Sharma (1973) also substantiates it through her study
of one of the villages of Himachal Pradesh the usage of Karma, along with other
kinds of explanations such as people blamed sorcery or god’s anger for their life’s
troubles and sufferings.

Whereas other studies show that Karmic retribution affects people’s life
collectively as Wadley and Derr’s (1990 cf. Rasmussen 2008) finding suggests
that in the village of Karimpur in Uttar Pradesh Karma is something shared by
the people of the whole village and if anyone commits misdeeds it affects the
whole village. The very conception of misfortune means something negative has
happened. Suffering is very much part of the popular culture whether in relation
with karmic causation or local rationalities stem out of an ill-fated event and even
if it is so there is no information about how a particular disabled living within
such cultural domain goes about making sense not only about such belief system
but also about himself and his kins. Disability is also understood as possession
by a bad spirit. For Mehrotra (2013) sudden bad events such as loss of ‘sensation
in legs’ or a sudden loss of vision completely is interpreted as possession by bad
spirits. People generally believe in some power to assist them to cope with this
misery. This outlook needs to be changed and there is a need to give space to the
voice of a disabled people that could depict a life beyond the interaction between
body and the traditional healing system.

Whether it is textual representation of disability, or the way it is understood in

both domain of cultures namely common or popular the very construction of
disability is negative or something to be cured. Disability has been depicted as
suffering within the two domains of culture discussed so far, namely common

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76 CULTURE AND DISABILITY ......

and popular culture. It is felt that the question of the existence could not be fully
understood unless the researchers decipher how disabled people’s identity comes
to be as it is which could take us beyond the existing conceptualization of stigma
and non-stigma regarding disability. Mehrotra’s Disability, Gender and State
Policy: Exploring Margins (2013) is most significant work that deals with how
families normalize the life of a disabled within the Indian cultural context.
Mehrotra argues that family structure and values are such in an Indian society
that it accommodates a disabled in the family. If an individual is able to perform
their gendered role, she gets all required support from family members which
helps her in undertaking many responsibilities of the household to the maximum
of her bodily potential.

Normalization and Disability

Mehrotra’s (2013) case studies of disabled women in Haryana village present a

nuanced understanding of their notion of personhood being disabled, which
indicates towards the existence of another culture in Indian society that is
normalizing in nature and not stigmatizing. She describes Maya Devi’s story who
is an orthopaedic disabled woman. Her disability is because of medical
negligence, mistreatment done by doctors on her thighs due to which she
acquired the disability. She further elaborated that though the disability is very
much visible there are no effects on her participation in household activities that
is considered as a hallmark of womanhood in Indian society. Similarly, Mehrotra
saw Chandbai’ who lost her hand at the age of 16, accommodated by her in-laws.
Chandbai could perform household related work without using prosthetic given
by the doctor that was enough to suggest that people accepted Chandbai’ being
disabled. That is not all, they also helped her regarding official documentation of
her disability. This helped her in availing all the government facilities.
Normalizing culture has limitations. As it does not offer much a disabled people
themselves negotiates with multiple realities which they encounter in everyday
life.

Rural Urban Divide: Tracing Life of a Disabled in Urban Spaces

The aim of this section to demonstrate complexity of life of people disability

which could not be traced with all its complexities if as researcher aims to limit
himself to how culture impacts disabled. Three interviews were conducted by the
author with disabled women living in Delhi/NCR. Due to the transportation and
time-related issues the interviews were conducted on phone calls and WhatsApp
audio messages. For example, Kiran, a visually disabled, felt that her life after
disability was better because she used to suffer from constant pain for a decade
after undergoing surgery for brain tumour that had disturbed her school life.
Though Karmic causation is widespread when it comes to defining disability, it
did not bother her that much as her family was educated enough to resist such

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Indian Anthropologist (2019) 49:1, 67-82 77

belief system that works only to make an individual weak from within. Her
scientific temperament could make a distinction between faith and ‘superstition’.

After visual impairment occurred Kiran’s mother took her to a missionary healer,
the whole experience was so tiresome and boring that she asked her mother not
to take her to such places ever again. Her relationship with God has been one of
connectedness. She sees God as a protector from ill will of others and save her
as well as her near and dear ones. Her life story stems from her constant
negotiation with her disability and the body. According to her there is a
normalized atmosphere at her home where she is never identified as a person with
disability. On the other hand, life at university campus is all about identity
politics. Articulating about her life she unpacks disability and being disabled on
three levels: negotiation between the body and self, kin group and the self and an
intimate self.

It was her plea that a disabled identity should not be something that must be
highlighted as it tends to curtail chances to build relations beyond one’s body by
creating compartments between disabled and non-disabled. But she did recognize
that being disabled provides the basis for a different kind of group formation.
Among the visually disabled people, those with peripheral vision help those
having central vision in day-to-day activities which works to consolidate the
disabled identity.

Such formation, however, to her mind never accounted for a sudden change in
one’s identity which brings a set of anxieties and curiosities attached to it.
Medical diagnosis of disability tries to enforce a permanent condition to a body
that sometimes falls short of the reality of how a disabled individual is
experiencing her/his body. Kiran used to see a curtain like thing and believed if
it is removed, she could gain sight again. Also, there was light perception which
deteriorated with time. She credits her family support for her acceptance of her
own disability. Parents want a disabled child to become able enough to perform
all kinds of responsibilities so that they can be accepted by the wider society.
This is not to deny the desire of Kiran to herself do things which interest her.
Everyone at home appreciated her when she tried making the bed, she could wash
dishes as well. She cleans her hostel room too. But when things do not go as she
wants them to be, she feels frustrated though it has never rattled her.

On an intimate level she feels that any relationship must be built on the idea of
love and not on body. Kiran was in a relationship with a visually disabled guy
but she feels he never really cared for her dignity. She explained that like a typical
male, he tried exercising power. She struggled to decipher whether it was a
relationship based on mutual love and respect. There was a communication gap
and the relation abruptly ended.

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78 CULTURE AND DISABILITY ......

Niharika, a graduate from University of Delhi, articulates how her life has been
as a person with polio. She unpacked her life on multiple level a normalised life
among friends, family and pears, negating with realities to excise her choices
which of course got modified with time. She said that disability never really
affected her personally till the time she had to make crucial decision about her
life related to education and a way of living. The reality check on how disability
curtails life chances happened when she started thinking about marriage. She
negotiated well with her parents to join a BPO that has night shifts instead of
teaching that she did on the insistence of her parents and on the reason of her
being a misfit in the profession. After which she worked in an MNC for five
years.

For her till the time she was not looking to get married she never really
experienced how disability could affect a person’s life chances. Niharika dated
almost ten guys. All of them were nondisabled and her first relationship was the
longest. Every time, it was she who was keen on marriage. There was no push
from the other side. It never occurred to her these things are happening because
of her being disabled untill a friend made her realize this fact. She registered
herself at matrimonial sites but she did not find suitable match among people
having some medical issues as well. The desperation of getting married was huge
as from friends to relatives in her age group were getting married.

Niharika’s parents were of the opinion that they have to attach property to the
marriage proposal in order to attract an apt match but Niharika did not like the
idea of being ‘sold’ or of her parents giving dowry to get her married. Around
that time, she got an email from a guy expressing interest in marrying her.
According to Niharika the guy very well understood the things she must have
gone through because he himself was disabled. His disability was systematic
muscular atrophy-affected independent walking of an otherwise self-reliant man.

The only demand of his mother was to be with him as a companion, Niharika
was also looking for the same. In fact, she refused one of the proposals from an
otherwise traditional family. The guy was nondisabled, but Niharika was not at
all comfortable marrying in a family that expected women to embody a
traditional lifestyle. As somebody who was never trained to be a housewife, she
rejected the offer to marry the guy. The couple were not thinking of kids when
interview was conducted, she pursued law after marriage and is assisting her
husband in his business that is also a choice, she made rather than pursuing the
career in law keeping her bodily imitation in mind.

Nusrat, in the interview, asserts that as soon one steps out of their home all kinds
of experiences await them to hamper the confidence of a person. Nusrat has polio
as she uses stick support to walk because of which later she developed hump
which made her object of curiosity in public eye. She differentiates between two

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Indian Anthropologist (2019) 49:1, 67-82 79

kinds of life that she is living marked by normalization within family and
humiliation outside it. She narrated one of her experiences when she applied for
a job. It was not her disability but anxiety of the head of the institute where she
applied for a job. He questioned her physical ability and perceived it to be a major
obstacle in discharging her duty to the fullest. For Nusrat it is such kind of
behaviour which makes her feel bad about herself.

At home she has never felt like being disabled though at childhood she has visited
both medical doctors as well as traditional healers, her family expected her to do
the same things what others would do. In fact, her mother taught her cooking.
According to her, it is the attitude more than accessibility that makes a disabled
feel excluded. She narrates one of her experiences of commuting via Delhi Metro.
The Metro provides wheelchair to disabled people that has played a crucial role
in making travel easier for the disabled. But for Nusrat the behaviour of people
assisting her with the wheelchair is important to analyse as she feels accepted
when those assisting her do it with a kind of personal touch but if they do it
mechanically a gap remains between the disabled and non-disabled which no
accessibility measure can fill.

To overcome attitudinal issues which stems from the fact that in Islam being
disabled considered as a ‘Taking a Test’, Nusrat argues for education of each and
every section of the society. She further adds those who are uneducated show
unwanted sympathy, especially those belonging to rural areas in a way that they
are thankful of God for a life without disability. Getting a good job is her priority
as it could give the much-needed financial independence, she says. She is not one
of those who think impairment means end of life, she wants to live every aspect
of it to the fullest.

According to her one should not stop living a normal life. She aspires for kids as
well as an understanding husband from her own religion though his degree of
disability should not be more than hers. She wants to remain within her
community because anyways as women one has to make adjustments after
marriage, settling down in a family that has different culture could consume time
which she would like to spent in strengthening the bond with her spouse. Though
given the reality amides we live, she is prepared to remain unmarried throughout
life rather than marrying unemployed or a villager. Courage and Confidence is
key to live a life with disability as one might face unpleasant experience in the
otherwise patriarchal world where women with disabilities have restricted life
chances than men with disabilities.

Conclusion

This paper intended to critically evaluate cultural conception of disability. The

aim was to show that research done only through strict cultural lens is not enough

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80 CULTURE AND DISABILITY ......

to comprehend complexities of human life. It is advocated that a researcher must

engage with the participant to trace how s/he evaluates her own decision-making
with regard to biological and cultural restrictions. As mentioned in the culture is
acquired knowledge, belief systems and thinking pattern which more on less
work as to define the very existence of the individual in the society. It has its
benefits, as seeing disability as a cultural product not only provides a critique of
rights-based approach to disability but questions the medical conception of
disability. It is found that evaluating the life of a disabled within a cultural
domain does not provide what the disabled themselves feel about their life.
Cultural conception of disability fails to provide a micro picture of a disabled
person’s life. So, it is argued that to know what the disabled feel about their own
body and people around them is of greater significance to understand what
exactly disability means to them who are negotiating with it.

Whether it is Sahil, Kiran, Niharika, or Nusrat do come to realise society do

marginalise disabled but it is not total exclusion from society, each of them
affirmed it through their evaluation of their life. While Sahil analysed his
encounters with Non-Disableds, Kiran talks about her journey of being disabled
and why she feels it to be a saviour, Niharika led major part of life without even
feeling that it could hamper her life chances, and married a disabled who was
understanding also it saved her from performing typical housewife role. Nusrat
wants a good job, an understanding husband having less impairment than her.
She is prepared to be unmarried throughout her life but does not want to get
married to an unemployed person or villager. The agency of participants in the
research provides a critique of earlier mentioned research within Indian context,
as elaborates how a person with disability makes choices to negotiate with the
reality Karma was not traced adequately. The paper tried critiquing portrayal of
Disabled as passive in order to argue that they could very well analyse life in
multiple registers.

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