Gender, Disability, and Literature in the Global South: Nepali Writers Jhamak Ghimire and Bishnu Kumari Waiwa (Parijat)

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GENDER, DISABILITY, AND LITERATURE IN THE GLOBAL SOUTH: NEPALI WRITERS JHAMAK GHIMIRE AND BISHNU KUMARI WAIWA (PARIJAT)

Tulasi Acharya

A Thesis Submitted to the Faculty of

The Dorothy F. Schmidt College of Arts and Letters

in Partial Fulfillment of the Requirements for the Degree of

Master of Arts

Florida Atlantic University

Boca Raton, FL

August 2012

ABSTRACT

Author: Tulasi Acharya

Title: Gender, Disability, and Literature in the Global South: Nepali Writers Jhamak Ghimire and Bishnu Kumari Waiwa, Parijat

Institution: Florida Atlantic University

Thesis Advisor: Dr. Mary Cameron

Degree: Master of Arts

Year: 2012

This thesis explores gender, disability and literature in the Global South through

an examination of the writings of two physically disabled contemporary women writers

from Nepal, Bishnu Kumari Waiwa and Jhamak Ghimire. I show how these renowned

contemporary writers challenge stigmas of the disabled body by deconstructing the

“ideology of ability” through their poetry, fiction, and autobiographical narratives.

Religious and cultural values disable women’s autonomy in general, and create even

greater disadvantages for women who are physically disabled. Challenging these cultural

stigmas, Waiwa and Ghimire celebrate sexuality and disability as sources of creativity,

agency, and identity in narratives that deconstruct cultural or social models of sexuality,

motherhood, and beauty. In this thesis feminist disability and feminist theory guide an

analysis of Waiwa and Ghimire’s writing to advance our understanding of gender, culture, disability and literature in the Global South.

GENDER, DISABILITY, AND LITERATURE IN THE GLOBAL SOUTH: NEPALI WRITERS JHAMAK GHIMIRE AND BISHNU KUMARI WAIWA, PARIJAT

Introduction……………………………………………………………………………..1

The problem perceived…………………………..……………………………...8

Thesis structure………………………………….……………………………..14

Chapter One: Feminism, Disability and Global South……………………….………..16

Feminist theory and disability….……………………………………………....16

Siebers’ ideology of ability….……………………………………………….....19

Thompson’s ideas on disability and extraordinary bodies…..………………....20

Culture as disability.………………………………………………………………...….24

Chapter Two: Religious and Cultural Contexts: Formation of Ideology of Ability.…..26

South Asian Patriarchy………..….……………………………………………..27

Religion……….……………….………………….………………….…………31

Law of Karma………………….…………………………………………….….35

Chapter Three: Jhamak Ghimire & Parijat.……………………………………....…..…38

Parijat…………………………………….………..……………………...…….39

Ghimire and cerebral palsy…………….……………………..…………………45

Ghimire and Parijat: body and works……………………………..…….……...46

Ghimire’s shame and sexuality……..…………………………………………...57

Parijat’s writing..…………………………….………………………………….60

Conclusion………………………..……………………..…………………………….65

Bibliography……………………………..……………………………………………68

INTRODUCTION

This thesis explores gender, disability and literature in the Global South1 through

an examination of the writings of two physically disabled contemporary women writers

from Nepal, Bishnu Kumari Waiwa and Jhamak Ghimire. These renowned contemporary

writers challenge stigmas of the disabled body by deconstructing the “ideology of ability”

through their poetry, fiction, and autobiographical narratives. Religious and cultural

values disable women’s autonomy in general, and create even greater disadvantages for

women who are physically disabled. Challenging these cultural stigmas, Waiwa and

Ghimire celebrate sexuality and disability as sources of creativity, agency, and identity in

narratives that deconstruct cultural or social models of sexuality, motherhood, and

beauty.

Disability garners different negative cultural constructs or “ideological

categories,” such as ugly, old, aberrant, deformed, derailed, debilitated or feebleminded,

and all of them devalue the human body. In her book Extraordinary Bodies (2004),

Garland Thompson, a prominent theorist of disability and feminism, explains this

prevalent cultural paradigm when she writes, “Culturally generated and perpetuated

standards as beauty, independence, fitness, competence, normalcy exclude and disable

many human bodies while validating and affirming others” (p. 7). The disabled are

deemed to fall under the category of “aberrant human beings” (Garland-Thomson 1997)

1 The term Global South refers to countries in South Asia, and they are generally viewed as Asian. The term is also used to distinguish these countries from the Global North which is generally viewed to comprise Western largely European countries. 1

who fail to confirm the cultural embodiment of a normal body. As bodies interact with

socially built environments and social expectations, they expose and proliferate

ideologies of varied degrees of disability.

Disability is more than ideas built on the social environment that shape our

understanding and perception of what it means to be able bodied. It is gendered, as well,

and colludes with cultural ideas about gender in specific ways. In the case of women,

since they are already deemed “the second sex” or “the other” in the vast majority of

cultures anthropologists have studied, female disability is even more poignant. This

ideology regarding ability preserves and validates what it means to be normal by limiting

women to certain “normal” standards. In her book Disabled Women: An Excluded

Agenda of Indian Feminism (2002), Anita Ghai highlights culture as the cause of

disability based on her research on disabled women in Indian culture. Concurring with

this culturally-based concept of disability, Garland-Thomson writes, disability provides

for the able-bodied “cultural capital to those who can claim such status, [and] who can

reside within these subject positions” (1997, p. 25). In other words, this ideology about

disability produces more disabilities and conforms to the binary normative standard of

ability vs. disability. Thompson further states, “disability as a significant human

experience occurs in every society, every family—and most every life... And it helps

integrate disability into our knowledge of human experience and history to integrate

disabled people into our culture” (2004, p. 26). Indeed, each human being eventually

undergoes a phase of ‘disability’; an old person or sick person is often called disabled.

What is disability, then, as I am using the term in the context of this thesis?

For the purposes of my analysis, disability can be understood as a kind of

discourse that generates an “ideology of ability.” The ideology of ability is a concept

Tobin Siebers introduces in his book, Disability Theory (2010). Siebers introduces the

concept as an outcome of how an ideology is created in particular cultural and social

contexts. A human being is abled only when s/he fits into the category of what it means

to be an able human being. If one does not fit into that category, one is considered

abnormal, not fully human, different, deviant, other, and therefore disabled, beings fallen from the “baseline of humanness” (Siebers, 2010, p. 10). The baseline of humanness has to do with the human body and mind that “gives or denies human status to individual persons” (Siebers, 2010, p. 10). To emphasize, Siebers’ understanding of an “ideology of

ability” points to certain religious, cultural and social values playing a significant role.

Those values reflect the patriarchal ethos in the society where attractive and able bodied

women are more valuable than disabled. According to Siebers, this ideology of ability is

an outcome of such a built social environment or cultural construct. An abled body is

marked with certain cultural/social normative standards that give humans qualities of ability. Since a human being is a social being and her consciousness is determined by a specific social milieu and with whom she interacts, one judges others based on preconceived social recognition. For example, the same abled body in one sociocultural

context can be a disabled body in another sociocultural context.

Thus, there is not only one ideology of ability, there are many ideologies of

ability. To borrow from post-modern theory, there is not only one signified concept of

ability, but rather many signifiers to define ability. Thus so are the concepts of ability

when one is stripped of one’s social and cultural biases of what it means to be able

bodied. To understand this, one needs to study the religious and cultural contexts and

values of the society because human activities, perceptions, behaviors, and interactions are shaped by such values. For example, a few years ago, a baby with three arms was born in the countryside of Nepal where I, too, was born, raised and spent most of my life.

The media reported that villagers considered the baby an incarnation of a god. Nepal is predominantly a Hindu country where exist many gods with more than two arms.

Villagers paid homage to the god-baby with flowers and garlands in their hands as offerings. At that time, the child’s body was not perceived as a disabled one but as one that Garland Thompson would call an “extraordinary body.”

In her book, Extraordinary Bodies (2004), Garland Thompson defines extraordinary bodies as differently abled bodies and the body of ability in a different way or in an extraordinary way. The child described above born in a different geographical location other than that region of Nepal would likely be considered disabled. Such kinds of religious beliefs guide human consciousness and transcend the common “ideology of ability.”

In Nepal, many cultural factors play a crucial role in forming an ideology of ability, such as patriarchy, caste, color, class, sex, and gender discrimination. Going further, each of these social and cultural factors are embedded in religious discourse and further ideologically strengthened. These concepts will be discussed further in the thesis.

Nepal is primarily a Hindu country. The census of 2001 in Nepal says that 80.6 percent of Nepali say they are Hindu, 10.7 percent regard themselves as Buddists, 4.2 percent are Muslims and 4.5 percent belong to other religions. Hindu religious texts and literature are predominantly patriarchal in that they stigmatize women as “the other.” In

the book Theorizing Feminisms (2003) edited by Elizabeth Hackett and Sally Haslanger,

Carol P. Christ talks about the psychology of patriarchy in her essay “Why Women Need the Goddess.” She points out that “religions centered on the worship of a male god create

‘moods’ and motivations’ that keep women in a state of psychological dependence on men and male authority, while at the same time legitimating the political and social authority of fathers and sons in the institutional society” (2003, p. 212). Here

“mood” means “a psychological attitude, such as awe, trust, and respect, while a

‘motivation’ is the social and political trajectory created by a mood that transforms

mythos into ethos, symbol system into political reality” (2003, p. 211). Religions and

religious texts have “such a compelling hold on deep psyches of so many” (2003, p. 211).

Some goddesses in Hindu culture are powerful. However, compared to male deities,

goddesses are less powerful. These religious mores ascribe to women certain prohibitions

and permitted behaviors and expectations. Ultimately, women are largely defined in

terms of beauty, motherhood, and sexuality, as the baseline of female humanness. If they

seem unable to maintain these standards, they are considered disabled metaphorically. In

Beyond God the Father (1993), feminist theologian Mary Daly discusses how religions

legitimate patriarchy. This patriarchal model of Nepali society further disables “disabled”

women because they are deemed as deviant, sufferers of wrong actions performed in their

past lives, according to the South Asian principle of karma. Karma is the Hindu concept

which states one is destined to suffer based on one’s past life.

In this thesis I explore the idea that disability is a culturally specific complex

embodiment. Siebers studies disability as a complex embodiment, not merely an

embodiment which has only to do with body, or pain, or physicality, but even more as an

ideology that guides human consciousness. Siebers writes: “This form of embodiment is

… a form of situated knowledge about the claims being made about and by women in a

given society” (2010, p. 23). The ideology of ability is created in a particular way and in

a specific context, as in this case Nepalese culture.

In this thesis, feminist disability and feminist theory guide an analysis of Bishnu

Kumari Waiwa (Parijat) and Jhamak Ghimire’s writing to advance an understanding of

gender, culture, disability and literature in the Global South. The two women writers

from Nepal challenge the specific “ideology of ability” commonly practiced in Nepal and

they deconstruct the ideology of ability through their writings. Their act of writing by

itself is a form of agency, as they write their lives. In this they help us understand

disability as an ideology. Importantly, Waiwa and Ghimire challenge stigmas of the

disabled body. They do this by celebrating sexuality and disability as sources of

creativity, agency, and identity in narratives that deconstruct social and cultural models of

sexuality, motherhood, and beauty.

Disability theories are currently emerging in the field of feminist studies, not only

in the Global North (such as Garland Thompson’s Extraordinary Bodies 2004, Tobin

Siebers’ Disability Theory (2010) but also in the Global South, including by women with disabilities, such as Anita Ghai’s Disembodied Form: Issues of Disabled Women (2003).

These books deal with cultural/social causes of disability rather than merely as a medical problem. The biomedical model defines disability “as an individual defect lodged in the person, a defect that must be cured or eliminated if the person is to achieve full capacity as a human being” (Siebers 2010, P. 9). In their book Gendering Disability (2004), Smith and Hutchison suggest that disability theory is also intertwined with the domain of

feminist theory because it encapsulates many domains, such as representation, body,

identity, and activism. In other words, feminism looks for positive identity formation for

women as a minority by representing them, freeing them from violence, hatred, and

prejudices, and by bestowing on them the shared experiences to help them prosper. So,

too, do feminist disability studies serve to provide positive identity for those disabled.

I examine the autobiographical narratives of Nepali writers Ghimire and Waiwa

in order to elucidate what disabled women writers from a third world country in the

Global South have to say about their own lives. I discuss what a woman’s “disabled”

body learns and gains from a society that would see the “deformed” body as asexual,

malformed and unfit for marriage and motherhood, by looking at Ghimire’s

autobiography. Ghimire writes her lived experiences in a society where the birth of even

the able-bodied female child is cursed by a prohibition on her performing certain future

religious and cultural rituals. Ghimire was born with cerebral palsy and as such she was

thought to be unable to make a living, and unable to manifest feminine qualities such as

motherhood, beauty, and sexuality. These traits are viewed as central attributes for

women in Nepali society where marriages are arranged and where having a beautiful wife

capable of bearing children is the goal of all men looking for a bride. Ghimire would be

denied these essential roles of being female.

Ghimire and Parijat’s narratives can be seen as affirming and confirming their

identity and their existence as disabled women writers. Their narratives specifically invite

us to understand disability and its causes and consequences and the cultural,

geographical, and religious contexts that shape people’s understanding of ability.

Therefore, my discussion on disability moves away from what people would generally

consider a ‘pathological study’ or medical matter to a religious and cultural one

(Thompson). It attempts to journey thus from the Global North to the Global South. That

said, my theoretical orientation is influenced by the perception of the body of women

with disabilities in the Global North, as written about in particular by Garland-Thomson

in her book Extraordinary Bodies (1997)2 and by Tobin Siebers in his Disability Theory

(2010). My goal is to define the ideology of ability in the context of Nepal and how two

women writers deconstruct that “ideology of ability” through the act of writing. The following chapter defines the ideology of ability in the context of Nepal in terms of patriarchy, gender discrimination, religion, and the concept of karma.

The Problem Perceived: Culture and Women

People with disabilities across the globe suffer as a result of human apathy and

cultural antipathy. They also suffer from social ostracism because they do not fit into the

social norms of what it means to be able-bodied. Renu Addlakha, in her case studies of

four disabled Indian women, writes, “They have been portrayed as medical anomalies,

helpless victims and a lifelong burden for family and society” (2007). While recognizing

the growing contribution of feminists to disability studies in the Global North, women

with disabilities who live in the Global South experience a double and sometimes a triple

disadvantage because they are viewed as being part of the inferior sex and other biased

cultural beliefs. In addition many live in abject poverty (Addlakha 2007, Dhungana 2006,

2 In her work Garland-Thompson views disability as a minority rather than a medical discourse and she uses disabled characters from a variety of novels featuring African- American characters including Beecher Stowe’s Uncle Tom’s Cabin to support her argument. She describes disabled women in those novels by showing how literature represents disabled women, and she concludes that they are powerful women with extraordinary bodies. 8

Thomas and Prakash 2002, Groce 1997, Rahman 1993)3. Research done on the lives of

these women highlights that the sexual and emotional aspect of their lives is regarded as

completely irrelevant because it is never discussed (Addlakha 2007). This absence of

attention to sexual and emotional ramification is relevant in terms of its lack in academic

literature.

I argue that the lack of literature on disabilities in the Global South requires that

the study of the epistemologies of the South have to be carried out. In other words, one

needs to know how the women in the Global South learned what they know. One should

study the limits of human knowledge about those who are disabled as well as of those

who look at the disabled in the particular cultural contexts. Ghai emphasizes that the

North’s discourse on disability ignores the harsh reality of disabled peoples’ lives in

countries such as India and Nepal, where many women are caught in social and economic

marginalization. Writers and advocates about female disabilities in the Global North have

tended to use examples that exclude the geo-political, cultural situation of women with

disabilities in the Global South. For example, even Garland Thompson and Tobin

Siebers, who emphasize disability as a cultural product, fail to integrate women with

disabilities from the Global South. Siebers provides examples of people with disabilities,

and all of them are from the Global North. Disabilities in the Global South have to be

discussed not only as related to personal tragedy, pathology, and any other medical

problems, but as related to religious and cultural prejudices.4 Researching these religious

3 All these authors I have mentioned in my bibliography highlight the causes of disability as cultural ones. 4 I am aware that there may be a seeming contradiction with using Parjat and Ghimire to subvert the epistemologies of the Global North, but I would argue that this apparent flaw is not so naïve as the influence of Western Culture and ideas of the norm of 9

and cultural prejudices that might have formed an ideology of ability, allows us to

compare and contrast the practice of democratic culture in the lives of disabled people.

Jenny Morris, an Australian feminist, wrote from her own experience as a disabled person that “alienation and anger comes from the failure of feminism to integrate the concerns of disabled women into its theory, methodology, research, and politics” (1993, p. 45). Ghai, while researching on Indian women with disabilities, mentions that the third wave women’s movement has not included disabled women into its agendas. Therefore, disabled women occupy a “multifarious and marginalized position” (Ghai, 2002, p. 53). These marginalized women can be discussed as a subaltern group while researching women with disabilities in the Global South. In her essay “Can the Subaltern Speak?” (2010) Marxist/feminist/deconstructionist Indian literary critic and cultural theorist, Gayatri Spivak, writes, “The subaltern has no history and cannot speak, the subaltern as female is even more deeply in shadow” (2010, p. 83). According to

Spivak, subalterns/women are oppressed people. The subaltern can be heterogeneous in its composition or demographic, and economically and socially uneven (Spivak, 2010).

Applying Spivak’s ideas to the context of Nepal, disabled women are the most suppressed and oppressed class in that they are completely deprived of political and economic access.

Disabled women in the Global South fall under the subaltern groups as minority groups unable to speak for themselves. Gayatri Spivak, who has most thoroughly helped us to see the subaltern as a social group, writes, “The question of women seems most

women are inculcating themselves more and more upon the Global South through mass media particularly the internet and advertising.

problematic in this context” (2010, p. 90). She elaborates: “If you are poor, black and female you get it in three ways…. And the subaltern women will be as mute as ever.”

Giving the example of the figure of the Hindu widow ascending the pyre of her dead

husband and immolating herself upon it, Spivak plays with multiple understandings

(signifiers) of suti or satee. Spivak highlights the fact that the word satee is/was defined

by either “Hindu leaders” or “British Colonizers” but never from the satee- performing

women themselves. They were muted. Metaphorically, the voice of the women with

disabilities, as compared to satee, should be heard to make sure we know what it means

to be disabled and what disability is.

Cultural constructions and different ideological perceptions serve to hide the

identity of each individual woman. Such exclusion is apparent in the lives of women with

disabilities in the context of Nepal. As Spivak writes, “Between patriarchy and

imperialism, subject-constitution and object formation, the figure of the woman

disappears, not into a pristine nothingness, but into a violent shuttling which is the

displaced figuration of the third world woman caught between tradition and

modernization” (2010, P. 102). First-world and Global North feminists collude with this

positioning, as they stand for the modern while failing to recognize in their models the

identity of women in the Global South. I find this conflict is one of the biggest challenges

for current western feminists. As Spivak suggests, the seeming tendency of Global North

feminists to see the lives of women changing for the better with modernization in terms

of ideas and engagement leaves the majority of the women in the Global South out of

these seemingly equitable solutions. To make it even clearer, women in the Global South

find themselves negotiating with deep cultural Hindu values and practices that are very

different to the Global North. For example, in the Global North, religion is not in the public sphere. However, Nepal is a Hindu dominant country and Hinduism is very public.

I argue that the idea that one size fits all in terms of the goals and aspirations of many

feminist writers in the Global North is developing but not fully incorporated in the Global

South, and one of the main reasons for this is the patriarchal nature of many, if not most,

of its groups.

Even if women with disabilities in the Global South are addressed somewhat by

scholars from the Global South, such as Chandra Mohanty, Gloria Anzaldua, and a few

others, feminists from the Global North have somewhat forgotten to study and research

marginalized women in their geopolitical and cultural contexts and their lived

experiences5. Very few of the marginalized women have been discussed and, therefore, it

has been difficult for women with disabilities in the Global South to become subjects in

the mainstream western feminist agenda. I suggest that the main reason for this exclusion

is a lack of knowledge about the profound influence of culture on beliefs about disability.

5 Mohanty has written many books, such as Feminism without Borders, The Third World Women and The Politics of Feminism (1991). Most of her works show how ideologies of femininity, sexuality, and race are central to understanding the global labor market. She encourages us to think about common struggles without universalizing women workers across the world. Much of this work has addressed the multiple connections between constructions of femininities, gender inequalities, and economic, cultural, and political globalization processes, as well as the ways in which these connections create both constraints and opportunities for women across the world. She is clearly a standpoint feminist who believes in the analytical value of historical materialism and rejects what she sees as the cultural relativism of postmodernist thought. Gloria Anzaldua was a scholar of Chicano cultural theory, feminist theory, and Queer theory. She loosely based her most well-known book, Borderlands/La Frontera: The New Mestiza, (2007) on her life growing up on the Mexican-Texas border and incorporated her lifelong feelings of social and cultural marginalization into her works. In her works, Anzaldua encourages women from the Global South to speak through themselves, if not from anything else, from writing. 12

The day-to-day lives of women with disabilities in the Global South are relatively

understudied because they are culturally understood as disabled and they are living a

punished life, having little or no value (Addlakha 2007). Having no one to speak for them

and their own voices denied, the condition of women with disabilities is extremely marginalized. In “Conceptualizing Disability: Developing a Framework for Political

Disability Identity” Michelle Putnam writes, “Disability itself is a social and cultural construction” (2005). Disability is uniquely culturally intertwined in the Global South

(Putnam 2005, Thompson 2004), situated not only within the individual, but also within the interaction between individuals and their physical surroundings (Hahn 1994). Ideas of inclusion, social justice and equity about disability that are widespread in the Global

North are not replicated in the Global South. It is, therefore, necessary that disability in the Global South should be discussed and conceptualized in its own cultural contexts

(Addlakha 2007, Dhungana 2006, Ghai 2002).

Understanding women through their lived experiences expressed in the words that they have used to write their body, sexuality, and their lived experiences in general is one way to discuss women with disabilities in the Global South. To that end, I have chosen

Parijat and Ghimire because they have lived experiences of disability. Studying disabled writers and their works in their particular cultural context and researching them is to bring them to the mainstream feminists’ agenda and make their case open to a larger audience. This research sheds light on both feminist issues and women with disabilities in the Global South issue. Reading Ghimire and Parijat’s writings helps one understand what is meant when it is said that they have “Bodies in Trouble” (Smith and Hutchison

2004). Their “narrative representations of lived experience can deepen and complicate

our understanding of the phenomenology of illness, pain, and disability and can reshape

our views on embodiment” (Smith and Hutchison 2004, p. 148). In other words, the

writings of disabled people represent their disabled bodies through narratives that help

one understand the disabled body as the cause of the ideology of ability rather than an

embodiment only. In “Bodies in Trouble,” Kristin Lindgren writes about the narrative of

the disabled body:

They support neither Plato’s view of the unruly body as an impediment to

knowledge nor a view of the body as a transparent medium through which self

enacts its project. Rather they suggest that embodiment experience generates

knowledge and crucially shapes these projects… itself a conscious project, one

that demands a strategic rethinking of self-identity. First person accounts of

illness and disability demonstrate that knowledge by bodies in trouble can

contribute in unique ways to theories of identity, subjectivity, and embodiment.

(Smith and Hutchison 2004, p. 146)

My close reading of these two disabled women authors from Nepal, looking at

how they view their bodies and disabilities from a subjective standpoint, will contribute

to theories of identity and embodiment from a Global South perspective. Parijat and

Ghimire’s writings (they have written in Nepali though some of their books are translated

into English), create discourses from their own standpoint by resisting or rejecting the

normative standards of beauty, femininity, and motherhood, and in so doing sharply

contradicting the Nepali view that to be disabled is to be less of a person. Through their

writings they force the reader to look past the visible disability and see the wholeness of

them as women who are perfect in their own way. 14

Thesis Structure

The work is organized into four sections. First, I discuss empirical and theoretical

literature on feminism and disabilities. I discuss the standpoint feminist perspective and

how that advances my disability study, by relating to the disability theory itself. Second, I

discuss disabilities in cultural contexts, reflecting on gender, religion, and the concept of

karma. They deconstruct an ideology of ability in the society, while showing the role of

religion and the religious beliefs in the lives of women and showing how those beliefs

further stigmatize women with disabilities in the Global South. Third, I discuss the biographical and autobiographical works of these two Nepali women writers, reflecting on their lived experiences as women who are not able bodied. I reflect on their narratives

and ideology of ability and I discuss how they deconstruct that ideology of ability by

interpreting their writings, images and symbols. The fourth and final section summarizes

the discussion, highlighting some major issues about women with disabilities in the

Global South by focusing on how women with disabilities have used their disabled

narrative to reject or resist the “ideology of ability.”

CHAPTER ONE: FEMINISM, DISABILITY, AND THE GLOBAL SOUTH

In this chapter, I examine the literature on feminism, disability, and women with

disabilities in the Global South. Looking from the perspective of standpoint theory

(Harding 2004, Haraway 2004, Collins 2000) I investigate the writings that address the

disabled body’s history, human body, identity, sexuality, growth, and beauty, and the

formation of an ideology of ability in a society. I unravel how the disabled writer

attempts to reverse negative social connotations conferred upon women with disabilities

by calling the readers’ attention “to the material reality of her ‘crippledness’ to her bodily

differences, and her experience of it” (Thompson 1997 p. 25). In this chapter, I discuss

the standpoint feminist theory and its contribution to disability theory to address the

condition of women with disabilities in the Global South. I discuss Siebers’ ideology of

ability in the context of Nepal along with the discussion of Thompson’s extraordinary

bodies to understand disability.

Feminist Theory and Disability: Standpoint Theory

Standpoint feminist theorists highlight the importance of questioning the cultural

construct of body, identity, and subjectivity6. Feminist standpoint theories involve a

commitment to the view that all attempts to know are socially situated. The social

situation of an epistemic agent—her gender, class, race, ethnicity, sexuality and physical

6 My reading of “Cultural Feminism versus Post-Structuralist Feminism: The Identity Crisis in Feminist Theory” by Linda Alcoff. Contemporary Feminist Thought (1988) by Hester Eisenstein, Feminist Theory (1992) by Josephine Donovan contributed to my understanding of why standpoint feminists question the cultural construct of body. 16

capacities—plays a role in forming what we know and limiting what we are able to know.

They can affect what we are capable of knowing and what we are permitted to know.

Putting the standpoint feminist theory within the prism of disability theory not

only highlights the situated knowledge of women with disability, but also questions the cultural construct of ability that further disables women. Standpoint feminism helps me advance my thesis regarding disabled women in Nepal because it critiques “unequal power relations based on social categories grounded in the body” (Thompson 2004, P.

21). Feminist texts, such as Unbearable Weight: Feminism, Western Culture, and the

Body (1993) by Susan Bordo, and Materialist Feminism and the Politics of Discourse

(1993) by Rosemary Hennessy examine gender as a discursive, ideological, material

category, going beyond a narrow focus on gender which, when applied to disability, also

helps one examine it as a constructed discursive practice. Introducing standpoint

feminism, I want to challenge the existing social relations that demean or disable women

in the Global South for which I use the disabled narratives that resist interpretation of

certain “bodily configurations and functioning as deviant” (Thompson 2004, p. 22). The

“disabled” women writers from Nepal prove that the “disability is not bodily

insufficiency, but instead arises from the interactions of physical differences within the

environment” (Thompson 2004, p. 23). Standpoint theory recognizes the immediacy and

complexity of physical existence. In her book, Black Feminist Thought: Knowledge,

Consciousness, and the Politics of Empowerment (2000), standpoint feminist theorist

Patricia Hill Collins, speaking for women of color, highlights the multiplicities of all

women’s identities, histories, and bodies. The two Nepali women writers who are the

focus of this thesis attempt to reverse the negative connotation assigned to the disabled

body through their autobiographical narratives. Given that a central goal of disability

studies is “to reverse the negative connotation of disability” (Siebers 2010, p. 4), my

reading of Waiwa (Parijat) and Ghimire can help one understand a form of situated

knowledge that counters society’s claims about them.

Standpoint feminist theory helps us conceive the perspective of others that

contributes to our understanding of prejudices against people with disabilities. Reading the narratives by women with disabilities helps us to understand their body and their view of their embodiment from where they are situated. Reading their story from their perspective helps us to be aware of an ideology of ability used to determine human status

(Siebers 2010). Siebers writes, “Oppression is driven not by individual, unconscious syndromes but by social ideologies that are embodied, and precisely because ideologies are embodied” (2010, p. 32). Applying this to disability and culture, we can understand disability as a dynamic, productive, and complex embodied ideology. As cultures’ ideologies of ability change over time the meaning of disability changes, too. We see in

Parijat and Ghimire’s writing a gradual shift in how they see themselves as they, too, change over time. Their situated knowledge of their bodies deconstructs the idea of

beauty as having to do only with appearance. For instance, while looking at herself in the

mirror, Ghimire writes how beautiful she is when she finds her breasts growing (Ghimire

2010). The positive perspective these women are using and writing deconstructs the

ideology of ability i.e. that beauty is neither appearance, nor skin, but depends on how

one perceives it. That deconstruction actually creates an affirmation of the women’s

situated lived experiences.

Siebers’ Ideology of Ability

In Disability Theory (2010) Siebers’ describes how embodiment is central to the

field of disability studies. Defining the “ideology of ability,” Siebers writes, “The

ideology of ability is the preference of able-bodiedness.” He writes that a culture’s

ideology of ability “affects nearly all of our judgments, definitions, and values about

human beings, but because it is discriminatory and exclusionary, it creates social location

outside” (2010, p. 8). This outside is the realm of “otherness.” This ideology of ability

makes disability fearful to us in a way that we never question. The writings of Parijat and

Ghimire, though, do question the ideology of ability that defines the “baseline of

humanness” in Nepali society through the disability narrative found in their writings.

Ghimire brings up this important contrast in her autobiography by writing how shamans

and doctors tried to cure her, while at the same time she believed that her imagination

was not less than the imagination of Greek and English poets like as Homer and Percy

Bysshe Shelly (Ghimire, 2010). The idea that disability is largely a medical matter is

strong, thus obscuring the fact that ability has to do with what it means to be a person,

what Siebers writes, one’s “natural gifts, talents, intelligence, creativity, physical

prowess, imagination—in brief, the essence of the human spirit” (2010, p. 9).

Parijat and Ghimire overcome disability through their act of writing, cultivating imagination and breaking the chain of stigmas that would claim it is better to be dead than disabled. The identity formations based on social and cultural traditions enforce the ideology of ability and show the profound misunderstanding of disability by creating biases. The human body is located in a specific social milieu, surrounded by social and cultural norms that define it, causing different kinds of bodies in hierarchy that privilege

one and subordinate the other. For example, in Nepal, thin women are considered ugly

and poorly fed, while robust, fleshy women are considered rich and beautiful. However,

as western influences permeate Nepal, fat women are increasingly perceived as

undesirable and unhealthy.

In my third chapter, I discuss how ideology of ability is formed in Nepali society

through Ghimire’s autobiography and how she deconstructs it and relates it to the cultural ideas of beauty. Moreover, the discussion of gender, religion, and the concept of karma in my second chapter divulge their details by helping us to understand how ideology of beauty is created in the context of Nepali society.

Garland-Thomson on Disability and Extraordinary Bodies

Thompson describes disability as a cultural construct rather than a medical matter.

Those who are disabled, according to Thompson, are people with extraordinary bodies.

Extraordinary bodies are the ones that differ from abled bodies. However, it is ideology that makes the “disabled body” suffer. In the day-to-day lives of the disabled in Nepal, they suffer from stigmatization. For example, it is common practice for “normal” people not to let their children pass near people with visible disabilities because they think that the disabled are cursed and will cast an evil eye on their “normal” children, causing the children to fall ill (Ghimire 2010). This idea connects back to what Garland-Thompson

(1997) says about “the process of stigmatization” that “creates a shared, socially maintained and determined conception of a normal individual” (p. 31). This process of stigmatization deprives women with disabilities of developing their sense of agency and political and social power (Ghai 2002). So-called normal people, or what Garland-

Thomson would call “normates,” often men, control their speech, body, health, mobility, 20

and sexuality,.7 This creates a ‘distance’ between the normative constructions of the abled

and the disabled, resulting in disabled women suffering from “the double burden of

ableism and sexism” (Addlakha 2007, p. 36).

The disabled body becomes the object or ground on which so-called normal

people make a discourse, interpret the body, and create a truth. Princeton medical

anthropologist, Joao Biehl, writing about a socially discarded disabled woman from

Brazil, writes: “The defective body … becomes a kind of battlefield on which decisions

are made within the local family/neighborhood/medical networks, decision about her

sanity and ultimately about whether ‘she could or could not behave like a human being’”

(2005). In other words, the disabled body becomes the object where “able bodied” beings

perform many experiments. For example, doctors make decisions on Ghimire’s body

such as whether to recommend certain medications. In some Nepali communities,

shamans lead and dominate discussions regarding women’s bodies and their health, or the

head of the family, maybe the father or husband decides and controls a woman’s body.

Her body becomes the object of the male gaze and the public stare. Ghimire writes,

“Shaman stared upon my body by chanting mantra loudly and trying to cure my

disability,” which was impossible. I develop these ideas on male gaze later in this study

while exploring the experiences of Jhamak Ghimire as told in her autobiography Jiwan

Kanda ki Phul, Life Whether a Flower or Thorn (2010).

Religious values confirm the patriarchal culture in Nepal (defined more fully in

the next chapter), both of which shape what I am calling the culturally-specific “ideology

7 Garland-Thomson points out that what is considered uncommon in a given society is abnormal and being normal or normate is that which fits in the common standard or what it is to be normal. It is very easy for men to override what it means to be “abnormal,” but for women it is barely possible, which Thompson describes as a way of normating men. 21

of ability.” Imposing a patriarchal ethos on women with disabilities, they remain doubly

disabled figures, evident in their representation in literature (Garland-Thomson, 1997).

Garland-Thomson writes, “The disparity between disabled as an attributed,

decontextualizing identity and the perceptions and experiences of real people living with

disabilities suggests that this figure of otherness emerges from positioning, interpreting,

and conferring meaning upon bodies” (1997, p. 10). Disabled characters are looked at as

“freaks” and are stereotypically represented elsewhere. The way the disabled are

represented makes the world of the disabled invisible by “denying them any opportunity

for subjectivity or agency” (Garland-Thomson 1997, p. 11). When women’s bodies,

behaviors, or attitudes become or are rendered different from what is “normal,” they are

deemed deviant and freakish. This justifies subjecting them to scrutiny, as they become

objects of political, social, medical, and institutional “gaze” (Mulvey 2008). In her

article “Visual Pleasure and Narrative Cinema,” Laura Mulvey, a film critic, writes:

In a world ordered by sexual imbalance, pleasure in looking has been split

between active/male and passive/female. The determining male gaze projects its

fantasy on female’s figure which is styled accordingly. In their traditional

exhibitionist role, women are simultaneously looked at displayed, with their

appearance coded for strong and visual impact so that they can be said to connote

to-be-looked-at-ness. (p. 837).

As Garland-Thomson writes, “If the male gaze makes the normative female a

sexual spectacle, then the stare sculpts the disabled subject into a grotesque spectacle.

The stare gaze is intensified, framing her body as an icon of deviance” (2004, p. 26). In

the contexts of Nepal, the male gaze has its own way of perceiving ideal beauty,

sexuality, and motherhood that might be different from the perception of ideal beauty in a

different location. Garland-Thomson writes, “Disability is not bodily insufficiency, but

instead arises from the interaction of physical differences within environment” (1997, p.

23). Ironically, in some historical and cultural contexts, women are prone to or are

obliged to be empowered/disabled8 as in the foot binding culture of China and genital

mutilation in countries such as Sudan and Tanzania. The irony here of course lies in the

fact that by disabling women’s bodies, they are made more normal, or what Garland-

Thomson calls “normate” in that particular society because of the cultural norms that

exist or have existed in a particular area. By taking something congenital away or

reassembling the appearance of a part of the body women are made normate (Garland-

Thomson 1997). Comparing cultural practices of femininity in the Global South with

those of the Global North, such as tanning, looking emaciated, and removing hair, it is

essential to understand what it means to be disabled in a particular cultural contexts

(Garland-Thomson 1997). Understanding disability in the context of the perception of

cultures of the Global South is equally important to understanding perceptions of women

with disabilities in the Global North. In so doing, feminist theory is advanced to be more

inclusive of all women.

Society, culture, and the body are linked in the disabled female person. An

ideology of ability stigmatizes the disabled people. Stigmatization excludes people who

do not fit the category of normal. Such people fall in the lower rank of social hierarchy,

where the “subaltern” group falls. They are “minorities,” “others,” “blacks,” “obese,”

“physically different,” or, in the Nepali case, “untouchables,” “lower caste,” “sinful” in

8 I use these terms because footbinding culture in China by itself seems to me disabling, but in that culture it can be considered enabling. 23

the karmic sense. In the cultural contexts of South Asia, if a person is a woman and

disabled, she is pathetic and mournful. Such women are inferiorized, stigmatized, and

considered a pariah (Garland-Thomson 1997, p. 33).

Culture as Disabling

Women are considered disabled when they do not meet social expectations.

Women in South Asian countries such as India, Nepal, and Bangladesh are first and

foremost considered producers and reproducers, with the very strong social expectation

that they will marry, bear children and do extensive farm and household work (Cameron

1998; Acharya 1994). Most countries in south Asia have agrarian economies; for

example, 70 percent of the population in Nepal depends on agriculture (Acharya 1994).

People expect to have many children because they are considered extra hands, and if a

woman cannot bear a child because of her disability, or cannot go to work in the family

fields, she will be badly treated in the family and considered worthless by her own family

and others. These ideas contribute to the formation of an ideology of ability that Parijat

and Ghimire highlight and deconstruct.

Disabled people do not conform to “architectural, attitudinal, educational, and

legal conventions based on assumption that bodies appear and perform in certain ways”

(Garland-Thomson 1997, p. 46). Like their disabled counterparts of the Global North,

women with disabilities in the Global South do not fit their culture’s norms and therefore

suffer from being perceived as nonproductive, not self-determinant, not autonomous, and

not self-governed. The two Nepali women writers’ creative works strongly and

persuasively challenge these normalizing ideas as their works as knowledge show us a

different picture of disabled women as women with “extraordinary bodies.” In so doing,

normal and abnormal are challenged as fixed concepts through the deconstruction of the

ideology of ability. Before I examine the lives of the authors it is necessary to gain a firm

understanding of the cultural and religious contexts that form an ideology of ability in the

context of Nepal. Therefore, I begin with a discussion that focuses on cultural and

religious aspects of the daily lives of millions of women in the Global South. Then I

begin discussing the works of the disabled writers from Nepal by looking at how they

dismantle the “ideology of ability.” I look into the words, imagery, symbols and ideas

that they use in their narratives.

CHAPTER TWO: RELIGIOUS AND CULTURAL CONTEXT:

FORMATION OF AN IDEOLOGY OF ABILITY

Religious and cultural values construct an ideology of ability in the Global South,

shaping the lives of women with disabilities there. Hindu religion organizes a male-based

hierarchy and is foundational to patriarchy. In this cultural context, as we will see, the

lives of women with disabilities are made even more difficult. Additionally, as a country

whose people experience extreme poverty, there is also a lack of basic health care, little community support and woefully inadequate government policies for disabled persons.

One rarely sees disabled people on the urban streets or village paths of Nepal. They are literally hidden from view.

In nations of the Asian Global South, such as Nepal, India, Bangladesh, and

Pakistan, people are distinctly and visibly split into the haves and the have-nots (World

Bank 1999, UNDP 1998, UNICEF 1996). The film, City of Joy9, made about life in an

Indian slum, speaks volumes about the grim reality of everyday life for millions of people

in the subcontinent. Vast numbers of people do not have sufficient food to eat; they are

malnourished and therefore prone to disabilities. In her research on disability in Nepal,

Rama Dhungana writes, “Higher disabilities rates [are] associated with higher illiteracy,

poor nutritional status, lower inoculation, and immunization coverage, lower birth weight

9 This is a very emotional, sentimental, and inspiring movie of the early nineties starred in by Patrick Swayze, Om Puri, and Pauline Collins, written by Dominique Lapierre, and directed by Roland Joffe. 26

of babies, higher unemployment rates, and lower occupational mobility” (2006, p. 26).

No sufficient records are kept on disabilities in the Global South (Wehbi and Lakkis

2010, Dhungana 2006, Ghai 2002), and for our purposes here, there are no strong laws

that protect disabled women.10 Dhungana writes in the context of Nepal, “the biased

decision made by law is that if a woman becomes physically disabled or loses her

eyesight, a man can have another wife without divorce (National Code 1964). Under the same circumstances, a woman cannot remarry” (2006, p. 28).

The situation of many disabled women in the Global South is exacerbated by traditional gender roles guided by religious principles and values. Traditional gender roles in the Global South are accepted by the majority of men and women as strengths of their culture (Prakash, 2002). In this chapter, I discuss disabilities in terms of patriarchy, religious culture, and the concept of karma. These play a crucial role in the formation of an ideology of ability.

South Asian Patriarchy

People from India, Nepal, Bangladesh, and Pakistan suffer from an astounding number of cultural prejudices and specifically women suffer from gender discrimination.

These cultural prejudices jeopardize the lives of women who are uneducated and poor. In these countries, access to health, education, and employment is unavailable to a large

portion of the population (Dhungana 2006). A study in the early part of this millennium

shows that more than 60% of disabled people in the Global South lack access to

10It is noted that in the United States laws that are supposed to protect the disabled may be circumvented. Still, in the United States having recourse to inclusive litigation is seen as the norm. 27

educational and employment opportunities (CBS11 1999, IYDP12 1981, SEU13 2002,

WHO14 2000). People with disabilities cope with many difficulties due to restrictions on

their mobility and social stigma.

Nepal, India, Pakistan, and Bangladesh are predominantly patriarchal and

culturally governed by the religions of Hinduism, Buddhism, and Islam. In South Asia

the religious-based ideological forces regulate the mindsets of men and women,

traditionally restricting women’s mobility in society and often in the past limiting them to

household chores (Acharya 1994, Cameron 1998). The dominant patriarchal system in

these countries makes the condition of women with disabilities worse.

In his book, Gender Knot, literary theorist Allan G. Johnson defines patriarchy

thus:

Patriarchy’s defining elements are its male-dominated, male identified, male

centered and control-obsessed character, but this is just the beginning. At its core,

patriarchy is based in part of symbols and ideas that make up a culture embodied

by everything from the content of everyday conversation to literature and film.

Patriarchy culture includes ideas about the nature of things, including women,

men, and humanity, with manhood and masculinity most closely associated with

being human and womanhood and femininity relegated to marginal position of

“others” (2005, p. 45).

Patriarchy in Nepal follows Johnson’s definition above but also contains other

cultural factors that come into play, such as concepts of purity, auspiciousness,

11 Central Bureau of Statistics 12 International Year of Disabled Persons 13 Special Education Unit 14 World Health Organization 28

marginality, caste, varna, and jat (Cameron 1998). In her book, On the Edge of the

Auspicious: Gender and Caste in Nepal (1998), feminist anthropologist Mary Cameron writes, “The daughter’s birth is marked by sadness and fear—sadness that a son was not born and that the life of the daughter will be difficult, and fear because she is a potential threat to the honor of her father’s patriline” (p.297). In this context, when a child is born female, lower caste, and disabled, all these stigmatizing aspects of society are compounded and the child’s life immediately becomes worse from birth through adulthood. Ghai argues that in “poor families with hand to mouth existence, the birth of a disabled child or the onset of a significant impairment in childhood is a fate worse than death” (2002, p. 51).

Some cultural practices in the Global South such as in Pakistan and Bangladesh, dictate that women in public life should be covered up almost completely, believing that the very presence of women in public life is a bad omen, and limiting her public autonomy and preserving her agency only for her husband in the private, domestic sphere. This dictation negates the idea of women being equal to men. In her research on women with disabilities in Bangladesh, Anika Rahman writes:

In a country where it can be a curse to be born a woman, the problems of a

woman with a disability are fourfold: she is a woman; she has a disability; she

lives in poverty; she is a victim of illiteracy and superstition. The extent to which

a woman with a disability is accepted is determined by the social position of her

family (1993, p. 40).

Among people with disabilities, the situation of women with disabilities in the

Global South is different from their male counterparts. Men with disabilities have more

opportunities than women with disabilities. A disabled man can marry a non-disabled

woman, but the vast majority of disabled women are forced to remain unmarried,15 making them a burden to family members (Addlakha 2007, Dhungana 2006, Ghai 2002).

The exception to this is that of a rich disabled woman. If her family provides an exorbitant dowry to a groom, then it might be possible for her to marry (Addlakha 2007,

Dhungana 2006, Hema, Prakash, and Sudha 2002, Ghai 2002, Rahman 1993). In her research on disabilities in Nepal, Bishnu Maya Dhungana writes, “Disability does not stop a man [from] doing anything unless his physical and mental disability is severe. But the situation is just the opposite for disabled women. They face double discrimination because of their disability and their gender” (2006, p. 23). In this context, Ghai writes:

Within the Indian cultural context, disability implies a “lack” or “flaw” leading to

a significantly diminished capability; images of the disabled are associated with

deceit, mischief, and devilry. Disabled people are sometimes depicted as suffering

the wrath of God, and being punished for misdeeds. Yet another strand of this

cultural construction conceives of disability as eternal childhood, where survival

is contingent upon constant care and protection (2002, p. 51).

Disabled women in the Global South are often denied opportunities to participate in women’s traditional roles, such as motherhood, and this can make women with disabilities seem invisible. This has to be seen in the context of countries where marriage and motherhood are seen as the pinnacle of achievement for women. The understanding of disabilities by the Global North fails to adequately account for the situation women with disabilities face in the Global South, for they fail to recognize the role of class,

15 According to the report of UNESCAP 1995, 80% of the disabled women are reported unmarried. Source: Dhungana 2006. 30

gender, and caste there. I argue, therefore, that disabilities cannot be deemed only as

genetic or biological defects; rather, disability is a social and cultural construct lodged in

the religious beliefs more than disability is a biological phenomenon. These gender biases in countries like Nepal create an ideology or ability, by othering women and their body.

Religion

Religion plays a key role in constructing an ideology of ability in a society.

Religion shapes human consciousness on morality and ethics, right, wrong, and proper.

Religion influences men and women’s physical, psychological and emotional state of

mind. To underscore this, I begin the section with an incident I witnessed that shows the

religious influence on women and how religion may shape women’s understanding in

Nepalese society. This discussion helps us understand how Hindu religion that confirms a

patriarchal society influences and impacts women with disabilities in Asian society,

particularly in Nepal.

One day while talking with a young, educated, cultured, urban, and unmarried

Nepali woman in Florida, Sushma Singh (pseudonym), she told me her day was fruitful

because she had worshipped Tulsi. (Tulsi is the name of a religiously significant plant in

Hindu culture and is basil in English). Sushma said that she was on leave and had been

rigorously fasting, not even drinking water out of piety for Tulsi. This intrigued me. To

give the reader a better understanding, let me explain the significance of Tulsi.

In Hindu religious literature, Tulsi is deemed an incarnation of Vishnu, the god of

the Universe, protector of human beings, and one facet of the Hindu trinity Brahma,

Vishnu, and Mahesh. According to Swasthani Bratakatha, a collection of fasting stories,

Vishnu had sexual intercourse with Brinda, she thinking he was her husband. Brinda later

realized that Vishnu was not really her husband, but an outsider disguised in the form of

her husband. Brinda was also known for her fidelity to her husband, Jalandar, who was

very powerful and potent and could be castrated only by the stealing of his wife’s

virginity. After realizing that she had been deceived, in a rage Brinda cursed Vishnu,

saying that he must live his life as a plant, which Vishnu became and remained with the

name of Tulsi forever. Although his life as a plant is disabling, Tulsi/Vishnu is still

considered a powerful god. Nepali women worship the tulsi plant as a form of God,

paying respect to it by fasting for the longevity of their husbands, and praying to get a

good husband if unmarried. This is what Sushma was doing.

However, in a critical reading of Swasthani Bratakatha, Vishnu can be considered

not a protector of human beings, but a rapist. Nonetheless, the majority of Nepali women

pay homage to Tulsi as the incarnation of Lord Bishnu. Bishnu, a male, stands as an

authoritative figure and that is reproduced in Nepalese social structure. Without

worshiping him, even an educated and able woman might feel helpless and disabled. In

other words, worshiping the god on a particular occasion would, she might think, make

her day. Imagine the situation of many Nepali women: the majority of them are not as

educated as Sushma; most of them live in villages largely untouched by modernity. This

is a clear example of how Nepali women’s modes of life are shaped by Hindu religious

texts and their interpretations, and how patriarchy in the form of male gods is

continuously reinforced in Nepali women’s minds. Ritual and cultural practices are

manufactured by Hindu scriptures. This might be a reason why the male figures in Hindu

societies do not easily lose their prestige even if they are deviant and morally unfit. The

superstructure, such as religious texts, literature, and other cultural institutions of Nepali

society, is male-centered, and Nepali women’s psychological self-image is male controlled. Women in Nepal are dominated by men and must act subservient to them.

This is replicated in many societies throughout South Asia in the Global South,.

Although she is just one example, there are many Sushmas in Nepali society who live a life under this cultural “ideology of ability.” In that sense, many Nepali women feel more comfortable and able by defining themselves through patriarchal ideology. In her essay “Desire and Power (2003),” Catherine Mackinnon writes, “men have become knowers, mind; women have been to-be-known,’ matter, that which is to be controlled and subdued, the acted upon. Of course, this is the social matter; we live in society, not in the natural world” (Hackett and Haslanger (ed.), 2003). Since social norms, values and practices are the outcome of social, cultural, political, and religious discourses largely directed to men’s prestige and power, Nepali women are always subordinated to males or male figures. Thus, if they are to challenge disability, Parijat and Ghimire must simultaneously do nothing short of challenging patriarchal religious culture in Nepal.

Hindu texts and Buddhist literature such as myth and scripture represent women as acting to please male figures in order to receive something good, useful, and generous.

Women are portrayed as successful only when they are able to please male figures through rigorous trials and tribulations. Their existence is defined in relation to men, a position extensively advocated in Hindu religious texts that define the norms and values of what women should and should not do. Due to such culturally based forms of patriarchy, many Nepali women can be thought to be in a state of psychological dependence on men. Nepali women have never allowed themselves to move freely because the mother teaches her daughter the same thing she experienced or learned, or

obliges her to follow the rules so as not to look deviant. Women perceive male figures in

the house as god because they are saviors of the family, just like the male gods portrayed

in Hindu religious and mythical texts and literature. A woman eats only after her husband

eats, often off of his own plate, she walks behind him in public, she touches the holiest

part of her body, her head, to the lowest part of his, his feet, in a gesture of supplication,

and her work in the home never ceases while he enjoys long hours of leisure. In that

context, “The husband dominating his wife represents God ‘himself’” (Hackett and

Haslanger, 2003, p. 212). So it can be said that patriarchal religion has “engendered

powerful, pervasive, and long-lasting moods and motivations of devaluation of female

power, denigration of the female body, distrust of female will, and denial of the women’s

bonds and heritage” (2003, p. 218).

Let me return to Swasthani Bratakatha. In there is a story of Goma Bramini, a

sixteen-year-old girl, married to an old man of eighty who is crippled and paralyzed. She spends a dozen years serving him as his wife. Finally, her fidelity to her husband and tolerance is rewarded when the old man turns out to be the young Lord Siva. The woman who worships Siva or his iconic representation, the phallus, believes that her wishes, dreams, and desires to find a young and handsome husband will come true. For a married

woman worshiping Siva is wishing for her husband’s health, energy, and longevity. Many

Nepali women consider their husband an image of Siva, and they worship their husbands

to worship the Lord Siva. Such stories and cultural practices in Nepalese culture reinforce

the idea that women devoted to their husbands will be rewarded for their unselfish work.

This translates in cultural terms as female subservience to male dominance. There are no

parallel religious rituals men perform on behalf of their wives.

One problem with our religious stories is that in “patriarchal religions, Gods are

supposed to be all-powerful, and creators of the world. So to patriarchal people, God is

all powerful because he is the creator of the universe” (Dally, 1993). In Nepali religious

thought and iconography, some of the female goddesses are portrayed as irrational,

bizarre and strange looking (Dalmiya 2000); in other words, they are metaphorically

disabled. Even today, Nepali society has cemented the patriarchal values through Hindu

religious practices that elevate the men’s, son’s, father’s and husband’s positions in

society. For example, if both parents are deceased, only the sons inherit all the property.

Men always hold greater power than women. Hindu religious and cultural practices have

cemented the idea that the female is a male’s caretaker by providing what the renowned

feminist Iris Young calls, “men and children with emotional care and by providing men

with sexual satisfaction” (Hackett and Haslanger (ed.), 2003). She further writes,

“Women in sexist society are physically handicapped. In so far as we learn to live out our

existence in accordance with the definition that patriarchal culture assigns to us, we are

physically inhibited, confined, positioned, and objectified” (2003, p. 171). Nepali women

are powerless in Nepali social institutions that are firmly grounded in Hindu religious and

cultural practices. Although there are some religious practices which provide Nepali

women with a sense of dignity, in reality they still subordinate Nepali women. They

merely cement the norms that women are the caretakers of men and children, who must

devote their lives to serving and obeying their husbands.

Law of Karma

Hinduism and Buddhism are dominant religious beliefs prevalent in Nepal that

are fundamental to examining the culture of disability in South Asia. In his book, World

Religions: A Voyage to Discovery (2003), Jefferey Brodd defines karma as a concept in

Hinduism and Buddhism that explains causality through a system where good effects are

derived from past good actions and bad effects from past bad actions. The causality is

said to be applicable not only to the material world but also to our thoughts, words,

actions and acts that others do under our instructions. For example, a belief in Buddhism

or Hinduism is to adhere to the concept of karma. In his book, Culture and Disability,

John Stone defines karma as a “belief that one’s present life is determined by what one

has done, right or wrong, in a previous existence” (Stone 2005, p. 27). In Nepali society a cultural belief and a social stigma is firmly rooted in religious beliefs in the form of karma. From one’s caste at birth to who one marries to one’s physical features, the concept of karma interprets many dimensions of life in Nepal. This applies to disabled persons, too. The belief in Nepal and other societies in the South Asian Global South is that disability is a result of doing something wrong in the past, resulting in a tragedy in the present. This notion further complicates the lives of people with disabilities in South

Asian societies and questions whether the life they are living is right, making them even more disabled. Therefore, religious beliefs play a crucial role in how disabilities are understood and the behavior that religion produces in people must be seen as central to understanding disability in the Global South. Stone writes, “South Asian beliefs related to disability and its causation range from those that focus on the behavior of the parents, particularly the mother, during pregnancy to sins committed by extended family members and reincarnation” (2005, p. 27). Some believe that disability can be caused by

“supernatural agents, such as punishment from God or the curse of the devil for their sins, or those of their parents, or even their ancestors” (Stone, 2005, p. 28). Some think that the

disability might be caused by wrongdoing, by dietary imbalance, or by transgressing taboos. In the context of Nepal, all of the former matter more because of their relation

with the concept of karma. Garland-Thomson’s understanding of disability provides a

ground for understanding disability in the Global South, as we see examples of what

Garland-Thomson is referring to. Jhamak Ghimire, in her autobiography, mentions in her

Nepali writing that the behavior of so called normal people toward “abnormal” people is

often rude, inhuman, and hostile, the result of commonly held beliefs that the disabled are

suffering the effects of being cursed for doing something horrible in a past life (Ghimire

2010).

CHAPTER THREE: THE LITERATURE OF

JHAMAK GHIMIRE AND PARIJAT

In this section I explore how and in what ways the works of physically challenged

Nepali women express their identity, agency, and lived experiences. These writers,

Parijat and Jhamak Ghimire, one suffering from paralysis and the other afflicted with

cerebral palsy respectively, overcame social prejudices and the patriarchal definition and

expectations of women’s bodies, sexuality, and social and economic labor through their

writings, to become two of Nepal’s most respected contemporary women writers. Their

writings are a true reflection of their inner health and mindsets, showing us their robust

bodies despite the fact that they are not considered able-bodied and hence had became

objects of social abhorrence. They also express love toward their own bodies, their lived

experiences of their menstrual cycles, and other potentially limiting physical factors. In

Nepal, menstruation is considered an impure state and women are not supposed to touch

anything considered pure. Writing the disabled body in the hands of women with

disabilities has become a powerful weapon to break free from the patriarchal definition of

female health and sexuality.

Parijat and Ghimire are able to challenge social injustice and patriarchal control

over their bodies, health, and sexuality. Both writers were physically incapacitated, but

they did not hesitate to openly and publicly discuss their lives in terms of their hopes,

dreams, and aspirations, including their sexuality, which is deemed a taboo subject for

women in Nepalese society. Their ideas on sex are clearly revealed in their writings

through poems, fiction, and autobiographies. They give the reader a powerful evocation of their bodies and sexuality that helps to celebrate their own bodies as agent in subverting the ideology of ability. The ideology of ability is woven with the capacity of

one who can act like a “normate” human being (Siebers 2010). Being a “normal woman”

encapsulates the ability of having traditionally accepted sexual intercourse with a

husband, and having the capacity to bear children and maintain motherhood. The ideology of ability negates the ability of the disabled. In the context of South Asian

countries like Nepal, the ideology of ability is formed through the lens of certain

religious, social and cultural practices. Ghimire and Parijat break the chains of social

stigma and establish themselves as powerful women. I introduce these women and their

works here and discuss how they deconstruct the ideology of ability extant in the culture.

Parijat

Parijat was born Bishnu Kumari Waiwa in April of 1937 in Darjeeling, a city that

lies in western Bengal, India. Because she was from a Lama family, she was given the ethnic name Chheku Dolma. Later she changed it to Parijat, meaning jasmine flower.

From birth, Parijat was so physically incapacitated that she became sick very easily.

When she turned thirteen, she was attacked by paralysis that left her with a lifelong weakness. Although Parijat liked to move around, she could not easily do so due to her physical disability and family restrictions. In The Legend of Literature: A Biography of

Parijat (2010), Narendra Raj Prasai describes how Parijat felt her home was like a prison and that she was held captive by her own body. In the following poem, “In the Arms of

Death,” Parijat expresses the outward appearance of an immobile body:

At midnight the moonlight comes in by a window,

It melts all over the quilt on my bed;

I am already wrapped in my shroud,

My bed is already my tomb.

Something within me is trying to vanish,

Someone inside me is trying to leave,

But these are not my remains,

Night after night I am living and dying;

I set my own corpse before me.

I lie on my back and I weep,

I mourn at my own funeral rite,

I am my own undying ghost,

I have roamed through half the graveyard,

Each night I return from the pointless journey,

Feet soaked by stygian waters.

But Death does not speak like this

From the pages of the Upanishads,

There, Death is a mother's welcome

To a child returning from play.

(Hutt 2008).

In some ways, the poem expresses the lack of love and intimacy from her family, and

she sees death as not something to be feared, but something as natural as a mother

greeting a child returning from playing. She is suggesting that life is a game and death

the natural result of living. The poem also helps explain that her disabled body became a

barrier between her and other people because people ignored her as a person and focused

on her disability. In one line she talks of “someone inside me is trying to leave” and

emphasizes that she is more than just what people see with the naked eye: “but these are

not my remains.” She knows that she is not experiencing a living death because “Death

does not speak like this” and that she will not give up because “each night I return from

my pointless journey.” She fights, or “returns.” The death imagery she has used in this poem highlights the fact that she is disabled and her body cannot move as freely as a normal body does. Nature outside conflicts with the painful body she is living with. She compares the bed to the tomb, and she calls herself an “undying ghost.” The knowledge of her embodiment the poem shares helps one understand the disabled body from the disabled’s perspective, but at the same time, the speaker in the poem has strong willpower by welcoming death happily, like a philosopher. The speaker in the poem celebrates the body, accepting the suffering, and welcoming death, by indicating the body by itself an extraordinary body.

Parijat was introspective from her early childhood. Prasai writes:

At a time when everyone else felt like going to school and learning, Parijat liked

walking, going into the forest and passing her days wandering into the

countryside and plucking and eating berries; she would get her dolls married, and

used to catch and fly crickets. She also used to go into the forest after collecting

her friends and would bathe in the stream. (2010, p. 20)

Parijat’s mother died when she was young, denying her a mother’s love and care.

Her father was authoritative and restricted her from various ordinary activities, including

leaving the house on her own (Prasai 2010). Parijat’s father, a homeopathic doctor,

treated her unsympathetically, refusing to grant her the freedom to live as she liked. She

left home without getting her father’s permission which was against the traditional duty

of a daughter. Her father’s authoritative and restrictive actions helped fuel a revolutionary spirit against patriarchy in Parijat, which manifested itself in behaviors such as smoking marijuana. Smoking marijuana by a woman was and is still considered highly deviant, immoral, and against social norms and values (Prasai 2010). Parijat writes in the context of her father’s restrictions, “Yet I fulfilled my objectives.” These words strongly suggest to the reader that, despite the obstacles that her father, her society, and life put in her way, she was able to overcome them and live as she chose and not how society expected her to live.

In the book, Himalayan Voice: An Introduction to Modern Nepali Literature

(2008), Michael Hutt writes, “The themes and philosophical outlook of her poems,

novels, and stories are influenced by her Marxist and feminist views and her own

personal circumstances: Parijat has suffered from a partial paralysis since her youth and

has ventured from her home only rarely during the past seventy years. She is unmarried

and childless, a status that is not usual for a woman in Nepalese society and that is due

partly to her illness and partly, it seems, to personal preference” (Hutt 2008, p. 111). She

was a radical in terms of how she lived, how she thought, and how she wrote. She

appears to have lived according to an inner calling that told her she could be all that she

wanted to be. In the following poem titled “To Gopal Prasad Rimal,” her love for life and

her beliefs about love are clearly seen:

The statement "I love you" is vague;

Surely Truth should be plainly seen

In the culmination of love.

It is I who must truly conceive

The tangible fruits of love:

In my sons I must see

The face of my soul.

Yes, it is I who must bear them,

The effigies of reality:

Buddha, Lenin, Gandhi,

But to actual love I cannot give

The ideal of motherhood;

I cannot pour out peace of heart

To the old man born in a cellar

Who fights for stale rice with the scurvy dogs.

My aged son, gutter born;

You may spew out hope for his salvation;

My love, you make conception

The manifestation of Truth,

My Lenin, even as you are born,

You anoint the sick and the stained.

I see only the face of self-reproach,

I cannot console anything which is mine;

It is over! I save Truth's fragments,

Poor Lenin, Buddha, Gandhi,

I save them from calumny,

These I cannot sacrifice

In gutters of filthy water.

And so I formulate vague ideals

Instead of love's clear reality.

(Hutt 2008, p. 114)

Her revolutionary spirit is evident. She kicks against the confines of her disabilities and

uses the revolutionary figures of Buddha, Lenin and Gandhi who all took extraordinary

routes to change societies. She sees herself as having agency and writes about the

“tangible fruits of love,” about sons that she will never have and links this notion to the

sons that fight for life in poverty, and vows that she cannot “sacrifice” the beautiful

lessons of the three revolutionaries. Her poetry is full of life and vigor in contrast to what

her society might deem should be her plight. In this poem, she points out that she cannot

give the “ideals of motherhood,” one element of the ideology of ability in the Nepali

society. However, toward the end of the poem, the speaker deconstructs this ideal of

motherhood by “formulating vague ideals/Instead of love’s clear reality.”

As Parijat grew older, her health became more fragile and she found herself

suffering from a variety of illnesses. In her later days she had ulcers compounded by

heavy drinking. Death came for her finally on the 16th of April, 1992. Smoking,

drinking, and remaining unmarried are unusual in the life of a woman in Nepalese

religious and cultural contexts. Parijat may have been excluded from some social norms

due to her disability, but more importantly she chose to shun other social norms for

women, thus challenging the notion of hetero-normative culture.

Ghimire and Cerebral Palsy

Jhamak Kumari Ghimire, born in Dhankuta of Nepal, suffered from cerebral palsy, “a disorder of movement and posture due to a defect or lesion of the immature brain” at birth” (Disability Journal 2009, Vol. 49). She became the object of social criticism and was seen as her family’s burden. Cerebral palsy caused severe challenges to

Ghimire, so much so that she did not have control of her arms, her speech, or have free bodily movement. 16 As a result of her cerebral palsy, Jhamak Ghimire started writing

with her foot. In her article “Of Poverty and Poems: Jhamak Kumari Ghimire”

Manjushree Thapa writes, “she explores hard political, intellectual, feminist and social

issues, without shying away from emotional expressions of love, regret, joy and sadness”

(Aug 08, 2002). In her autobiography, Ghimire writes about her disability with the utmost

forthrightness, including how she faced forced menstrual seclusion, and how she was

molested by an odd-jobs man when she was alone at home. We may interpret this

incident as her becoming an object of desire in the eyes of the man, who probably first

stared at her because of her disabilities. Garland-Thomson writes, “feminization prompts

the gaze; disability prompts the stare” (p. 28). When Ghimire was molested by the odd-

jobs man, this may be interpreted as her becoming a victim of not only her disability,

16 An article “A report: the definition and classification of cerebral palsy” published in an online journal writes, Cerebral palsy (CP) is a well-recognized neuro-developmental condition beginning in early childhood and persisting through the lifespan” (June 23, 2009, Vol. 49). The report further defines Cerebral palsy as causing activity limitation that is attributed to non-progressive disturbances that occurred in the developing fetal or infant brain. The motor disorder of cerebral palsy is often accompanied by disturbances of sensation, perception, cognition, communication, and behavior.

which prompted his stare, but also her femininity which prompted his gaze. A stare

signifies distraction, but a gaze signifies attraction. Ghimire’s disability did not distract

and repel the man, but instead it attracted him. Here Ghimire deconstructs the ideology

of ability that emphasizes that only on the able body is gaze possible.

In her autobiography, Ghimire emphasizes the necessity of sex, physical desire,

and love, which are considered irrelevant to the lives of women with disabilities as the

ideology of ability “determines the value of some sexual practices and ideas” over

disabled people (Siebers 2010, p. 136). Siebers writes, “The idea of sex life is ablest,

containing a discriminatory preference for ability over disability…One of the chief

stereotypes oppressing disabled people is the myth that they do not experience sexual

feelings or they do not have or want to have sex—in short, that they do not have a sexual

culture (p. 138). This ideology of ability in terms of sex determines how we think about

sex in the lives of women with disabilities. Ghimire, in her autobiography, discusses her

sex life, growth, and beauty, by dismantling “sex culture” in the ablest society.

Now I move on to the works of Ghimire and Parijat to show that the ideology of

ability existed in the society and how they deconstruct that through their autobiographical

narratives, poems, fiction, and the act of writing by itself.

Ghimire and Parijat: Body and Works

In her autobiography, Jivan Kanda Ki Ful (Whether Life is a Thorn or a Flower,

2010), Jhamak Ghimire writes about the topic of kinship and the sex discrimination by

addressing her grandmother: “My dear grandmother, why was it wrong to give birth to a

daughter? You were sad just because you had no son to start you on your journey to

heaven after your death (Ghimire 39).17 This reflection encompasses the power of religion in the lives of people and the preference of sons over daughters in Nepalese

society. In a sense, a daughter is already disabled whether or not she is physically disabled because a daughter is unable to perform funeral rites. Without these religious rituals which only a son can perform, parents who die will not have peace in paradise.

Hence, a daughter is less religiously important to parents than a son. This ideology marks a daughter as a person less than human (Siebers 2010). In Nepali culture, even the inability of a woman to bear a son robs her of personhood.

Patriarchy in Nepal makes the situation of women with disabilities there worse.

Ghimire writes how her father treated her badly in a chapter titled “Until Hope Exists.”

“If I didn’t obey my father’s orders, he would scold me saying ‘alchhine sanpe,’ meaning unfortunate bad creature, and he would begin cursing me. He thought I was dumb and that only he was clever and had a right to laughter and happiness, but I didn’t have that right. Furthermore, so called intelligent people wished I could die early so that I would not be a burden to society”18 (Translation mine, Ghimire 55). This statement clearly

speaks about people’s attitudes toward women with disabilities in contexts where

patriarchal culture is more dominant and people often see the death of the disabled as the

only solution to the challenges they face. What people think and what they wish for

disabled people is an outcome of this ideology of ability that guides human interaction in

a society and their perception of disabled people (Siebers 2010). In her following poem

“A Street Child’s Question to His Father,” she questions her father who stands for

17 In Nepali culture, a son has to perform special ceremonial rites at the death of his parents making the path to heaven for his parents clear after their death 18 From her Autobiography, Jivan Kanda Ki Phool (Life is Whether a Thorn or a Flower), Jhamak Ghimire writes what she experiences herself as disabled suffered from Cerebral palsy. 47

patriarchal ethos as she compares herself to a street child, abandoned and forlorn.

Baba! I'll ask you a question

if you won't shout it down

for though you can boast

a hundred thousand offspring

I have only one father

Baba! Have you forgotten me

amid the hordes of your offspring

I am your fugitive child

Have you forgotten your

sleepless communion with my mother?

How could you embrace me

a new ray rising from wrong time?

I am the avenging apparition

of wrong time

an unneeded offspring

added to the hordes of your offspring

a mere child who broke through

his mother's stained womb

a renegade child

Baba! I'll ask another question

though you can boast

a hundred thousand children

the union of your blood is in

the union of my blood

Questions of silent union

arise from the cacophony

Half formed by you

fully formed by my mother

am I, the child of the street

Why did you damage me

on a corner of the street?

Why did you fill my mind

with gunpowder?

Its transformation will leave

your society and you

poisoned

Baba, my last question:

why are you siring

renegade children like me

who have lit your funeral pyre

before you have died

who have mourned you

before your death

shattering pebbles

Baba! Why are you siring

renegade children like me?

Ghimire points out these questions toward her father who stands for patriarchy

and asks him to honestly answer her questions. She calls herself a “fugitive child,” but

she does not blame herself for that. She recognizes that children are not possible without

men and women, and both equally participate; a child’s blood is the blood of both father

and mother. She is revolutionary against her patriarchal society. In the poem, she

questions, “Why did you damage me/on a corner of the street? Why did you fill my mind

with gunpowder? Its transformation will leave your society and you poisoned.”

Ghimire’s disabilities were productive for her because they forced her to learn to

circumvent her disabilities and to seek answers to fundamental questions of life and

death. Siebers points out that the ideology of ability reproduces different feelings toward

people with disabilities. One of them, Siebers stresses, is that “it is better to be dead than

to be disabled” (p. 10). In that context, Ghimire questions, “Is death a solution?” by

challenging and deconstructing this ideology of ability. She writes:

When I heard people wishing my death, I was too tortured. I was lonely. I had

feelings, but I could not speak. Nobody would like to hear me. I could feel the

pain inside my heart. I had no words, nor sign or symbols with which I could

communicate. I had to keep listening to what others kept saying and I had to keep

tolerating, and I could not do anything else more than that. I could not understand

these people who wished my death sooner rather than later (Ghimire 55-56).

Disability was a forceful matter of pain and human sentiment in Ghimire’s life. She never

found a person who could fully understand disability. This ties in with Siebers’ idea of

disability in which he talks about how one’s ideology of ability guides his/her

understanding of what it means to be able or disabled. Because of the cultural factors that

shape one’s ideology of ability, one would not be able to fully understand so called

disabled people.

Under the topic “Shaman and Doctors” in her autobiography, Ghimire writes how

a shaman was called to treat her cerebral palsy. The cultural belief that people are

disabled because of supernatural forces and can be healed by a shaman is not new.

Ghimire’s parents thought that the shaman could cure their daughter and make her a

normal person. The shaman, of course, could not, and even foreign doctors escaped their

medical responsibilities by telling her parents that Ghimire was suffering from weak

bones. Ghimire’s body became an object, a ground about which people discoursed,

interpreted, and created their own truths. All this was against Ghimire’s wishes. She

could do nothing about these attitudes because she could not speak or move. She explains

further how society looked at her under the title “I am Inside the Beauty of Society.”

Ghimire writes that society thought of her as a woman with a weak body, soulless,

without desires or feelings, void of emotions, and ugly. Society only looked at her

outward appearance and judged her according to a conception of beauty that Ghimire

lacked. “People laughed at me,” she writes. Ghimire questions her society, asking, “Why

does not the society see the inner beauty that lies beyond the outer beauty?” and

comparing herself with the Greek poet Homer, the English poet Shelley, and another

famous disabled woman, Helen Keller. They were beautiful even if they were disabled

because their ideas were beautiful. This is how she defines the concept of beauty, by

subverting the beautiful / ugly dichotomy and the subsequent stigmas attached to disabled people as ugly, aberrant, and strange. Here it is evident that disabled people are frowned

upon or valued on par with what Garland-Thomson calls the “freak show.” When one

looks at the freak show, one might laugh at it or gesture at the members or pass

judgments upon them, which is exactly what Ghimire’s experience shows. But she

subverts this idea of beauty by sharing her experiences and knowledge on disability.

Ghimire feels her body, her growth, and her sexuality. People often avoid these topics in relation to the disabled body because they think that the disabled body is somehow taboo when talking about sex and sexual activity. Moreover, the ideology of ability does not permit the idea that the disabled are sexual, or have legitimate feelings

about beauty, health, and eroticism (Siebers 2010). Ghimire, however, looks at herself in

the mirror and finds that she is beautiful. She falls in love with her beauty, a beauty that society cannot see. This narcissism emerges from within her as she enters adolescence and enjoys the sexuality that society thinks is absent in the body of disabled people, especially women (Ghimire 2010).

Ghimire’s writing challenges the notion of how non-disabled people look at women’s bodies and corrects how they should be looked at. She deconstructs the sex culture that defines an able body because the culture is lodged in a healthy body and mind that only able body can perform. For example, when Ghimire looks at herself in the

mirror, she defines her beauty, sex, growth, and eroticism. In “Consciousness and

Curiosity in My Adolescent Phase,” another section from her autobiography, Ghimire writes, “I started looking at myself growing up. When I looked at myself in the mirror, I found myself so beautiful. When I looked at my vagina I became amazed and overjoyed”

(2010, p. 110). Similarly, she experienced her menstruation as a normal cycle of life in her body, but society put her away, saying that she was impure. She questions why her society prefers males who are grown up and developed out of the same blood and its cycle that society thinks is impure (Ghimire 2010, p. 120).

Ghimire complains to society about its prejudiced perception of disabled people or what I call an “ideology of ability.” Finally she challenges ideas in her patriarchal society in the following poetic lines under the title “Freedom of Life”.

Even the insects enjoy the freedom of life

Over the sky risking their lives

As soon as the tiny wings sprout on their bodies.

Is what the meaning to be human is to live the life of fear and danger

Being suffocated inside the cage of life? (Translation mine)

Ghimire’s writing “calls attention to the material reality of her crippledness to her

bodily difference and her experience of it” (Garland-Thomson 1997, p. 25) and she

challenges the ideology of what a normal body is. Ghimire interprets that people around

her looking at her body are no different than people watching a strange bird in a cage.

She sees herself as being viewed like a beast or what Garland-Thomson might call a

freak. Freak shows, like those that occurred in the United Stated in the nineteenth

century, have been popular in Nepal, though this trend is waning. Looking at physically 53

different people becomes a spectacle to entertain the viewers. Defining herself in terms of

her beauty, femininity, sexuality, growth and her adolescent phase, Ghimire deconstructs

the cultural prejudices that define disability as deviant, anomalous, pathological, and

ugly.

Ghimire’s writing of life draws upon her lived experiences and creates discourses

from her own standpoint by resisting or rejecting the normative standards of beauty,

femininity, and motherhood. Her writing resists the idea that reinforces patriarchal

cultural norms. Thus, her writing of her disabled body in cultural context defines

disability in a different way, not rejecting the body she lives with, but rather celebrating

it. She writes, “I defined life as the most beautiful flower ever” (Ghimire, 2010, p. 33),

this, while in the midst of her uncertainty and scorned by the so called able-bodied.

However, she further shares her experiences in this way, with irony and pain:

But I lived. I lived like a beast, without a difference. The difference was I ate rice

that a beast could hardly get. I wonder whether there is someone who has come

across such a life that has not its own color, nor the experiences of pain. I lived

my life with invisible emotions. A poet could write a beautiful poem being

inspired by such life, or an emotional one might like the story that invests in

someone’s tragic life. But the life I lived then was painful and intolerable (p.34).

This sums up how she lived as one disabled and how she still looks at her life positively. To be born disabled was considered a curse given by God due, according to the law of karma, to the sin in her previous life, Ghimire became an unlucky object to people in her society. No one’s eyes filled with emotion. No one’s heart melted with love and kindness toward her. She questions, “Who is to blame for that?” She writes, “Since I

could not express, I didn’t have a particular medium to convey my message, nor

language, nor signs, nor symbols” (Ghimire, p.34). Thus to express herself, she started

writing. “Should disability be defined only in terms of physical disability? Then why is

not Homer incomplete? Why does not the world consider Helen Keller incomplete?”

(Ghimire, p. 34). Ghimire writes that she didn’t have her own voice, nor had she legs to

walk on her own, nor could her hands pluck marigolds and rhododendron (p. 35). She

needed words to describe her loss. What she learns from her body is to communicate

through writing, a silent medium of communicating, a way to find relief and release from

the prison of her body. The writing of her body becomes her epistemology gained

through the experience of her body in specific cultural contexts. This act of writing

finally deconstructs this ideology of ability in the society where Ghimire lives.

Ghimire rails at patriarchal society. Addressing sexual discrimination in a society

that prefers sons to daughters, Ghimire writes, “Males are to be blamed because they

can’t inseminate the gender of a kid they want to implant in a woman’s womb, a woman

is like the earth that will reap what has been sown” (p.38). Ghimire questions, “Why on

earth does our society understand just the opposite?” Her writing clearly reflects not only

her lived experience but also urges feminists and disability feminists to understand the

female body in a specific cultural context. Questioning the deeply rooted patriarchal

Nepali society, Ghimire challenges an ancient, deep-seated male chauvinistic society and

its social understanding. She understands her life, her body in the particular society that

assumes the able body can work and support its family, but Ghimire’s body could do

neither. She writes:

I wanted to move my hands, but in vain. I could not even move my little fingers. I

tried to speak, just the lips trembled, but no words came out. I tried to walk, but

hardly crawled. To reach a few yards away could be a new thing to me. I never

saw the world beyond my house courtyard… When I saw cows and goats mooing

and bleating, I found my life in them… I could not say I was hungry, nor could

say I was thirsty. I had no medium to communicate… Tears used to roll down by

themselves. (Ghimire, p. 47-48).

Her writings gave her a new life, a new existence, an alternate solution to death.

By writing about herself and about her body, she not only reclaimed her past painful

experiences, but also challenged the cultural stereotypes that she was victim of.

Ghimire’s writing invites her reader to understand her lived experience and know the

body she suffered with. Her writing rejects a society that practiced superstitious cultural

beliefs. She writes, “They indoctrinated superstitious cultural beliefs into kids’ minds,

colored their tender hearts with social biasness, and those kids never became able to

overcome social prejudices and superstitious cultural beliefs” (Ghimire 68). Ghimire

narrates the story of her disabled body upon which many shamans and doctors

experimented to correct her. She says, “My body was taken to the shaman and witch

doctors, but they could not fix me, some doctors simply said that my brain was damaged”

(Ghimire 69). She thinks she is beautiful and she is perfect. Defining her beauty, Ghimire

writes:

My understanding of beauty was completely different from my society’s

understanding of beauty. Society looked at the surface and called one beautiful

and the other ugly, but I never thought a human being becomes beautiful or ugly 56

just by looking at his/her appearance… Is she beautiful if she looks beautiful but

is corrupted in her manner? … As I was born with my feeble body, maybe I had

no soul, they thought, or maybe I had no desire, no feelings. People could see me

as very ugly because, I know, this society would look at her body, or her skin,

flesh, and bone, or color, shape, and size…Are only those who look beautiful in

appearance human and others are not? What about the English poet Lord Byron

who was also disabled? Wasn’t he beautiful, beautiful in his mind? So I would

like to question, am I not beautiful? (Ghimire 81-83).

In this paragraph, she highlights that she does not fit into the ideology of ability that

defines the baseline of humanness that consists of certain measures, such as the so called

healthy body, mind, height, weight, beauty and others that give one an identity (Siebers

2010). However, she claims that she has all of these things but in a different way,

deconstructing the ideology of ability. These identities do not fit her picture of herself

and she reasons that her perceptions are more important to her. They were different, but

being different did not mean that they were wrong.

Ghimire’s Shame and Sexuality

When society does not credit one with the value of a potential human being,

shame emerges and sexuality remains distant. Ghimire’s understanding of shame and

sexuality is different from the understanding of many people in her society. Topics like

sexuality that are deemed taboo for women in patriarchal society are facts of life for

Ghimire. What Ghimire has realized is something Siebers describes: “sexuality is a major

part of a person’s identity, that sexual liberation is a good in itself, and that sexual

expression is a civil right crucial to human happiness” (Siebers 2010), This realization is

evident when Ghimire describes herself and her beauty and the growth of her breasts.

Ghimire (2010) underscores a dilemma between the private and public life a

disabled woman has to undergo. However, she is not afraid to talk on the topic of sex and

her genitalia that the able-bodied devalued as abnormal. She writes:

To me, I had not a feeling of shame until I turned eleven. I used to wear the same

clothes again and again until they would wear out because I had to crawl here and

there. I would not care even if the clothes didn’t cover my shame because I was

not a “fair child.” So I should not have to cover that like others, nor should I have

to feel any shame. I liked to play naked, so I did not have to worry about my

clothes being torn apart (Ghimire 86).

This social stigma related to disabled people’s sexual ability, as Ghimire mentions in her writing, teaches that she was not a “’fair child.’” This ideology of ability in terms of sexuality demeans women with disabilities. She deconstructs this ideology by asking many questions. She asks questions like, “What had my genitalia done to them?” “Why did they keep attacking my vagina? What kind of enjoyment would they get by guessing about my sexuality?” (86). She mentions the difficulty of having privacy from public view and how the able-bodied show their voyeuristic attitudes towards people like herself. She writes, “I had lost my shame because I could not cover my shame by myself.

I needed someone to fix everything for me…. As I grew, I became aware of it. I didn’t let others get any enjoyment as they hurled pebbles attacking my private parts” (Ghimire

90). As society did not care about her, it became an opportunity for her to enjoy her sexuality freely, to understand herself, and to realize her growth of sexuality, even if the

people could not accept her sexuality as equal to the able-bodied. “My vagina was fully

developed naturally, but I was not sure if not to cover it was weakness, mine or someone

else?” Ghimire questions. She further mentions that people used to talk about her

sexuality in front of her and speculate about her body. Siebers interprets disabled

sexuality theoretically in a way that fits Ghimire’s experiences shared through her

writing. Siebers writes:

First, thinking about disabled sexuality broadens the definition of sexual behavior.

Second, the sexual experiences of disabled people expose with great clarity both

the fragile separation between the private and public spheres as well as the role

played by this separation in the history of regulating sex.Third, co-thinking sex

and disability reveals unacknowledged assumptions about the ability to have sex

and how the ideology of ability determines the value of some sexual practices and

ideas over others. Finally, the sexual history of disabled people makes it possible

to theorize patterns of sexual abuse and victimization faced by other sexual

minorities. (2010, p. 136-137)

However, Ghimire challenges the stereotypes that “the disabled people do not have or

want to have sex—in short, that they do not have a sexual culture” (Siebers 2010, p. 138).

Thus she breaks the normative assumption about what a sex life is. Ghimire is aware of

her body and its growth. She writes, describing her youth in her autobiography:

I had everything on me that a female has, such as breasts, buttocks, and vagina,

and they were developing. Along with them, my life was being colorful. To be a

woman is also to have menstruation, although it is considered impure in our

culture. I bloomed like pear and guava plants in full bloom, like the blossoms of

rhododendrons and marigolds. My cheeks bloomed with color of youth. My

reproductive organ matured. And I menstruated… When I menstruated the first

time, my mother shut me in a room, preventing me from seeing my brother

because she said I should not see him, touch him, and contaminate him. She

didn’t let me sleep where I usually sleep. I cried a lot…I didn’t know where the

blood was coming from (Ghimire 119).

Ghimire’s writing about her body and sexuality helps one construct sexual identity as disabled theory. In that sense, Siebers disability theory helps us understand how sexual identity can be defined as “theory laden constructions, combining both objective and subjective values, used by individuals to make choices, to test the consequences of their actions, and to explore the possibilities and responsibilities of their sexuality” (2010, p.

138). Siebers further writes, “Sexual culture is designed as a concept to provide deeper,

more sustained idea of how sex and identity interconnect by resisting the partitioning and

privatization characteristic of a sex life” (p. 139). It means to unleash sex, allowing it to

“overflow the boundaries of secured places and to open up greater sexual access for

people with disabilities” (2010, p. 139).

Parijat’s Writing

Most of Parijat’s poems “spring from her physical condition and from a profound

atheism and moral despair” (Hutt 113). Parijat was disabled through paralysis. She had to face many difficulties and trauma that society brought upon her. Her stories, novels,

and poems became her voice and became a medium to communicate her body, health, sex

and sexuality, her life cycle, her desire that challenged the male-dominant, non-disabled

society. She expressed her desires through the characters in her stories. Let’s look at her

poem titled “A Sick Lover’s Letter to Her Soldier”:

How eager this flower is to fall,

How it longs to cut short the winter day,

To pass in a half-conscious night;

Death returns, defeated,

From the hands of Life—

Alas, Man does not die.

In this poem, her body becomes a metaphor for the flower, a nature that passes

through many seasons and obstacles. Regarding Parijat’s body and beauty, Kamala Sarup

writes that there was joy, enthusiasm, and cheerfulness although various kinds of diseases

had attacked her. Her body was short, quick, and active. Although she was weak, thin and

disabled physically, her mind was strong (Sarup, 2006). Regarding sex and love, Parijat

thinks of them as a necessity and a “natural process.” According to her, to have sex is

easier than to love someone, and she expresses her unfulfilled physical desire for her first

love because of her lower social status (Prasai 2010). This part of her work is very

revealing and outrageous, deemed to be breaking Nepali taboos by bringing out these

issues in her writing.

Parijat’s writings show her liberation from women’s traditional roles by letting

female desire and eroticism become freely mixed with the creative force of imagination.

When she writes about sex, it goes beyond the boundaries of her body and becomes a

creative force that gives her agency and power to fight against social stigmas and

superstitious norms and values toward disabled people. Like Ghimire, her works become

a matter of her sexual liberation and of her self-determination despite the fact that both of

them are differently abled and their society thought of them as unable, crippled, abnormal

and lacking human characteristics, or in short not being able fit in the ideology of ability.

The narrative in their creative works is their life force, making their disabled bodies into

abled normal human beings with their own agency. Their bodies are different bodies from

what male bodies or non-disabled bodies have set as norms. This is encapsulated in the

following poem where Parijat expresses her love, freedom, desire, and the beauty of body although her own physical body is incapable of moving freely:

Life companion, much, much love;

I feel I might send you a heart

I feel I might send you a love letter,

Tied round the necks of these free-flying pigeons,

Repeating the sentiments of last century’s love,

But what free bird could fly

Across today’s lines and borders,

With what sighs could this withered existence

Lay down to rest in the winds of this world?

(Hutt, 2008, p. 115).

Even if Parijat does not describe explicit experiences as Ghimire does, she has represented herself in most of her fictional work, such as a novel and poems where her main characters are disabled. And most of the characters deal with beauty, sex, femininity, love, sexuality, and growth, which are seldom considered in the life of one with disabilities. Regarding sex, Parijat writes, “Theoretically, I agree that sexual

intercourse is a natural and desirable process of creation. It may be that this process is

beautiful in itself or it may be that this process may not have any relation with beauty and

limited only to physical happiness and satisfaction—but I searched for the beauty in it

and I proceeded forward into the sex world” (Prasai 2010, p. 79).

The way in which Parijat presents her disabled characters is empowering. One of

her most powerful novels is Shirish Ko Ful (also translated into English as Blue Mimosa).

The novel is full of imagery. The images associated with Suyog, the male character in the

novel, are dark and he fails to meet and converse with the female character, named Bari.

He even fails to argue with her. But Bari, who is physically handicapped, teases him to

get married. Bari defies all Suyog’s attributes. Here the story elevates the position of the

female with disability higher than the able-bodied man. She defines love thus:

Love, Love is a mirage, Love is the greed of a goose, Love is a lifeless truth, The thirst of a kakakul bird

Which loves the sun and blocks its setting; An ephemeral body, an endless desire, But love is the union of bodies, Me in your arms, each night, A row of desires set out to block death— I am dreaming and burning my sweet dreams. Beloved, you wrote to ask me If I smiled in your billet picture, 63

You said you did not want to lose me, You said my letter woke you up like a phoenix. This is all just history now, How I have survived I do not know, I have waited long, you will surely come To this phoenix in her ashes, Not rising to health once more, (Hutt 2008).

In these lines, she asks: Who can say the disabled body does not have feelings,

emotions, and the desire to love and be loved? The beauty of these lines echoes the truth of the beauty of disabled women that people who see only superficial beauty will fail to see. Her words demonstrate her powerfulness when society only sees weakness. People often look down upon the disabled body, locating love, emotions, and other desires in the flesh. They seem unaware that perhaps the greatest organ in our bodies lies between our ears: our brain. Parijat writes in her poem love “is lifeless truth,” “union of bodies,” that rises like a phoenix. Her words, like the mythological bird that is forever reborn from

ashes, shows us that disabled women in the Global South, who seem to be languishing in

the ashes of their lives, relatively ignored by the feminist scholars of the Global North, are in fact regenerating themselves through the written word and giving themselves a voice that demands to be heard.

CHAPTER FOUR: CONCLUSION

This study has outlined the grim reality of disabled women in the Global South, and how the disabled writers in the Global South have been meeting such challenges. As

discussed, many societies in the Global South are patriarchal, and women and their

positions in these societies are often seen as having miniscule value. In societies that

prefer sons to daughters because sons are necessary to observe significant rites of

passage, the birth of a daughter is given very little importance. If a woman is seen as

ugly, deformed and cannot participate in motherhood, she becomes a person of derision

in that society and it is as if she does not exist or does not have any identity. She is

invisible. Therefore, from this viewpoint, the lives of disabled women and their lived experiences are completely irrelevant to the mass of non-disabled people because they do not fit into the “ideology of ability.”

Grasping the cultural impact of religion and day-to-day norms in the Global South enables researchers to gain a better understanding of the roles and responsibility of women in societies touched and shaped by such norms. A woman can be a real woman only if she can maintain the duty and beauty of a mother, which is marked by limited mobility, and she is seen as giving physical and emotional support to her husband. If she is physically disabled or unable to maintain those qualities as non-disabled people assume, she will suffer social abhorrence and aberrant attitudes toward her. Sakshi Broota

Hosamane, a disabled feminist writer, writes:

Both disability and gender are physical constructs that totally ignore the person.

To be a disabled man is to fail to measure up to the general culture’s definition of

masculinity as strength, physical ability, and autonomy. To be a disabled woman

is to be considered unable to fulfill the role of homemaker, wife, and mother, and

unable to conform to the stereotype of beauty and femininity in terms of physical

appearance. (2002, p. 56)

The understanding of ability is so biased that the disabled are still relegated to the realm of personal tragedy, are not seen as a cultural challenge and disabled people simply become victims and are at the mercy of others. Women with disabilities in the Global

South are doubly or even triply suppressed due to the hetero-normative model of patriarchal societies, often further reinforced by religious values.

Parijat and Ghimire’s writing construct their subjects in such a way that

“displaces the negative cultural images” (Garland-Thomson 1997, p.103) and social stigmas that women with disabilities experience in the Global South. This disability

“narrative of self” authenticates who they are and what they experience, not by offering a model to society that looks down upon the women with disabilities in the particular

cultural contexts. Rather, the wonderful contribution these writers have made is to

celebrate who they are and what they are by challenging the social and cultural

understanding of disability. As black females are creating their selfhood (Garland-

Thomson 1997, p.104), these disabled women writers in the Global South are also

building their selfhood “on the narrow space between victimization and assimilation, so

that neither repudiates her history nor embraces the conventional scripts of womanhood

that have excluded her” (Garland-Thomson 1997, p.104). Ghimire writes and creates her

subjectivity though she cannot speak while Parijat does the same by criticizing biased

social norms and values and transgressing cultural taboos. On the one hand their bodies

are disabled, but on the other hand their disabled bodies become a trope to communicate

the message of their subjectivity, selfhood, and identity. Although their bodies are

different from the privileged norm, writing gives them a privileged position. Their

bodies become the source of their freedom while at the same time existing as the source

of condemnation. By claiming their bodies as disabled ones, they create their identity by

rejecting the culturally and religiously prescribed norms of women and men while at the

same time claiming both. We see this because Parijat and Ghimire remain unmarried, but

nonetheless claim the beautiful feminine qualities of their bodies. Their “validation,

power, and identity derive from physical differences and resistance to cultural norms”

(Garland-Thomson 1997, p. 105), thus allowing us to shift not only or mainly our

“conception of disability from pathology to identity” (Garland-Thomson 1997, p. 137),

but from biased cultural understanding of disability and the feminine, to identity in the

context of the Global South.

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