Destiny in Our Hands-Rajesh-Sent to GB

8/8/2019 Destiny in Our Hands-Rajesh-Sent to GB

1/53

Narrative Inquiry on

Lived experiences of People living with HIV who

bravedthe rising tide

Academy of Gandhian Studies

Center for Research, Training and Social Action


2/53

2

C O N T E N T S

Foreword ..

Acknowledgements

Overview

1.1 Introduction and Methodology..1

1.2 What does this book offer: Stories of Ordinary People living with HIV....2

Chapter 1: Historical perspectives on Evolution of human behavior ....Error! Bookmark

not defined.1.1 Evolution and Human Behavior...

1.2 Good and Bad: Frameworks that condition human behavior............... ........... .......... ........... .......... .......... 12

Chapter 2: Lived experiences of PLHAs ................................................................................... 32.1 Lived experiences of guilt and shame.....2

2.2 Lived experiences of Stigma and Discrimination ....................................................................................18

2.3 Beyond Stigma and Descrimination-Violence and Exploitation ................................................................

Chapter 3: Making a meaning of lived experiences .. ..............................................................3.1 Making meaning of experiences of stigma & Discrimination, Violence and Exploitation ...2

Chapter 4:Lived experiences Vis--vis evolution of human behavior24.1From purposelessness to Purposeful situation At individual level&group level2

Chapter 5: Regaining Lost Pride -In the light of Social role valorization theory ...............5.1 Playing roles that get socially respected: The Mantra.......2

5.2 The third Force: Challenging the system2

Chapter 6: Advocacy vis--vis Power and Empowerment..6.1 Mapping the DNA of change process..

6.2 Role of PLHIV association in the change process.............2

Chapter 7 : Message for all of us. ............................................................................................. 507.1 General Community behavior Vis--vis Evolution of Human Behavior...................................................2

7.2 Demystifying Sympathy and Empowerment.2


3/53

3

F O R E W O R D


4/53

4

Dedicated to Sunita, Dhanalakshmi, Adilakshami,

Bibi, Mulamma, Nagendramma and Ramana with out

whose support this research would not have been

possible


5/53

5

A C K N O W L E D G E M E N T S

This study immensely benefited from discussions with Ravi Suneel Kumar,

whose insights into the issues of People Living with HIV have helped develop

new perspectives to our understanding.

We acknowledge support of Nagireddy, J.Kotaiah and Sunitha during fieldwork.

It is their committed work with communities and personal rapport that they

share with each individual that has made our job easy. Special thanks to

Prakasam Positve Women Network.

Heartfelt thanks to Governing Board members of Academy of Gandhian Studies

for their encouraging and inspiring words that have enabled us to continuously

strive to set higher standards in every thing that we do.

Special thanks to Sri. Sivarama Murthy garu, Member Secretary, Academy of

Gandhian Studies, for his kind gesture of going through the whole manuscript

with patience and blessing this effort with foreword.

Sincere thanks to Plan India who have been supporting Child trafficking and

HIV/AIDS Project in Andhra Pradesh, for the encouragement and support in

bringing out this book.

Immensely thank participants in this study who have willingly come forward to

share their experiences. Also thank other PLHIV association members of thecoalition who have helped in strengthening the ideas with their honest feedback.

Sincere thanks to Kim for the inspiring work with Narrative Inquiry.

Views and opinions expressed in this book essentially are of the author. They do

not necessarily reflect those of Academy of Gandhian Studies.


6/53

6

O V E R V I E W

1

1HIV prevention Sign in Ho Chi Minh City, Vietnam: Courtesy: AVERT (over view of AIDS and

HIV in Asia). An example of how HIV is depicted as a dreadful disease.


7/53

7

I. CHANGE: The buzzwordI.1 Introduction:

India is one of the high HIV prevalence countries and having large number of

People Living with HIV (UNAIDS 2005). It is estimated that around 2.5 million

Indians are currently living with HIV. Most of the initial cases of HIV had

occurred through heterosexual sex; but at the end of the 1980s, a rapid spread of

HIV was observed among injecting drug users in Manipur, Mizoram and

Nagaland. After a brief period of lull and hesitation in the late 80s this

traditional country2 has finally recognized the need to address HIV, by launching

a National AIDS control programme. In 1992, the government set up NACO

(National AIDS Control Organisation), to oversee the formulation of policies,prevention work and control programs related to HIV and AIDS. In 2001, the

government adopted the National AIDS Prevention and Control Policy.

I.2 The Change:

Across the world, including in India, there was a time when most of us believed

and so the media highlighted HIV as a dreaded disease. There were number of

stories that appeared on how people living with HIV had been thrown out of

homes, buried alive and mercilessly left to die their own death by family

members and relatives. Soon there was a change witnessed. In the place of storiesof plight, we started witnessing stories of courage and hope that showed how

people living with HIV have started their life again and on how they have come

out into public and are contributing to the well being of their own people.

Undoubtedly these stories have depicted a sea of change in thinking of the media

and of the community in general. What made this change?

We, the coalition of Academy of Gandhian Studies, a network of 20 grass root

level NGOs, working with People living with HIV in Andhra Pradesh, for over 6

years have identified that men and women living with HIV, who lookeddevastating both physically & mentally and literally lost hope & purpose to live,

have remarkably returned to normal health and leading positive and happy life.

Looking at such a change, we have often been hounded by questions on the

2It is often debated in development sector that the then prime minister of India in early 90s has

refused to accept that HIV is a problem in India. Given the traditional and cultural background of

the country it was argued that vulnerability of the country to HIV is less.


8/53

8

factors that influenced this change in behavior so that our understanding of it

can help facilitating change in others life as well. From researching academic

literature and talking with academics we have found that lived experiences of

people living with HIV with an intention to scientifically analyze this change is

largely unresearched and hence this research is intended to bridge this gap.

Intended to understand this change and factors that influence it, this research

aims to explore lived experiences of people living with HIV.

II. Human Behavior and Change:Human being is a Psychophysical organism, whose life an integrated unit of

mental and bodily activity, determined by both hereditary and environment that

evolved over a period of time. Our focus of discussion here is more on

Environment, which is a combination of physical, psychological and sociological

factors influencing human behavior.

There is ample evidence, which suggests that as a result of influence of

environment, we develop a philosophy for life, which acts as a foundation for

our character, which manifests itself through our behavior. Interestingly, each

experience that we come across or live in our life passes through this process,

essentially leading to action. Narrative inquiry on lived experiences of People

Living with HIV proves this argument true and evidently shows that each

experience that PLHIV have lived has had triggered off an action in them, which

essentially lead to CHANGE in their behavior. This realization further deepens

our interest to find whether such change has a common pattern, following which

others in similar conditions can find hope in their life despite their HIV status.We take pride in the fact that seven lived experiences that have been part of this

book have proved that destiny of our lives is indeed in our hands. This is the

mantra that this book offers to its readers through comprehensive analysis of

these stories.

III. What does this book offer: Stories of ordinary people?This book presents life stories that show lived experiences of people living with

HIV and how they made a meaning of it. These stories predominantly highlight

experiences of stigma and discrimination. For the first time at grass root level it

opens up debate on lived experiences of shame and guilt, which is evidently seenas a major contributing factor for suicidal tendencies in men living with HIV.

While doing so, it successfully attempts to find an answer to deal with such

feelings. Most importantly, this book captures experiences of exploitation and

violence that were hitherto not spoken-off by those who have undergone them.

In essence, this is essentially an effort made to understand the change vis--vis


9/53

9

socio-cultural-psychological and historical contexts within which individuals

operate.

These stories challenge dominant theories, which claim that individuals that

undergo stigma and discrimination withdraw from their active social roles. It

evidently demonstrates that such experiences have either developed a

mechanism of adapting to the existing social context or such experiences have

forced them to develop a negative behavior towards the system. The third and

interesting response of PLHIVs to stigma and discrimination is challenging the

system itself. Supported by Social role valorization theory (Lemay, 1995;

Wolfensberger, 1972), this book reveals the mantra for Regaining Lost Pride in

the society that once discriminated.

It further offers a revolutionary perspective on the mindset of general

community, while exploring roots of stigma and discrimination. Looking back atthe dreams that we as a nation once cherished for democracy and development,

it attempts to highlight power-empowerment dynamics in the lives of PLHIVs

and how they strive to understand them and address them through

collectivization and collective action.

It brings us to the conclusion that Regaining Lost Pride can only be possible if

every PLHIV is able to achieve improvement in their psychological and health

conditions supported by improvement in their socio-economic conditions. Above

all it advocates that ultimately it is their capacity to deal with Power within,power to and power with dynamics that holds key to PLHIVs meaningful

empowerment.

Finally, it discovers the role of associations/networks of PLHIVs in the change

process, identifying support roles that it plays at every stage of this process that

each of us as PLHIV under go. While promising hope to PLHIVs, these stories

offer message to general community, academicians, policy planners and above

all to the development practitioners. Permit me to tell you a small story here so

that we prepare ourselves for further reading.

A Japanese master one-day received a university professor who came to enquire about

Zen. The master served tea. He poured his visitors cup full, and then kept on pouring.

The professor watched the overflow until he no longer could restrain himself.

It is over full. No more will go in


10/53

10

Like this cup, the master said, You are full of your own opinions and speculations. How

can I show you Zen unless you first empty your cup?

Let us now empty ourselves and muster our courage to move on to explore the

lived experiences of PLHIV, but before that we shall try and understand the

broader context within which they will have to be understood.


11/53

11

Chapter 1

Historical perspectives on Evolution of Human behavior

1. Evolution and Human Behavior:

Before we actually start discussing on human behavior and factors that influence it

vis--vis lived experiences of PLHIV, let us first understand the concept of human

development, as human behavior is essentially an integral part of it. According toCharles Darwin Struggle for existence going on in all the species leads to a natural

selection based on the survival of the fittest. During this struggle for existence,

structural modifications take place and they are passed on from generation to

generation. Majority of us believe that Darwins theory of evolution is the most

scientific analysis on evolution of mankind.

Interestingly he foresaw applicability of this theory in the field of Psychology and

said, In the distant future I see open fields for far more important researches.

Psychology will be based on a new foundation, that of the necessary acquirement of

each mental power and capacity by gradation. Light will be thrown on the origin of

man and his history. (Darwin, 1859b, p. 458). This gave birth to a school of thinking,

which believes that human being is a Psychophysical organism, whose life an

integrated unit of mental and bodily activity, determined by both hereditary and

environment that evolved over a period of time. Our focus here is to know more

about environment and its relation with human behavior.

What is behavior? Behavior is a persons action or reaction to some situation or

stimulus and that action communicates and exhibits character of that individual.

Let us understand stimulus and character separately. A pinprick makes a manjump. Pinprick is stimulus, and jumping is the response. Noise makes him turn

his head. The noise is the stimulus and head turning is the response. Hence

stimulus is nothing but environment, which is a combination of physical,

psychological and sociological factors influencing human behavior. A person at

funeral, is influenced to be saddened on the other hand when with the family of

The Greatest discovery of my generation is that human being can alter

his life by altering his attitudes of mind

-William James(US Pragmatist philosopher & psychologist (1842 - 1910)


12/53

12

newly born child, action is different3. So both negative and positive environment

too influence behavior.

As a result of a lot of such influences from childhood, each individual develops

their own unique character that is defined by a philosophy 4 towards life. It is not

necessary that each individual is aware of and articulate their own philosophy

but their character exhibited by their behavior always reveals its presence in

them. Does that mean that philosophy of life or character remains static? The

answer is certainly no, because as long as our experiences or influences keep

changing so does our philosophy and our behavior. Therefore, behavior depends

on the character-individuals philosophy and environment.

1.2 The Good and Bad

Socio-cultural and religious Frameworks that condition human behavior

Social frame works:

Beyond doubt or argument it has been proved by many that physical conditions

have greater influence on human behavior. A room neatly arranged has its

influence on our thinking in that atmosphere. If so, does our social hereditary

have a role to play in our behavior? The answer is certainly yes. Social

hereditary, which is again a combination of socio- cultural and religious frame

works, that the humankind has made for it self, primarily acts as a behavior

conditioning factors. Let us now have more elaborate discussion on this.

In the mists of history humanity existed in a state of primitive communism, as

in small groups of hunter-gatherers that would share the produce of their

collective labor. Later, private property developed as a ruling class emerged for

the first time. This new class had to defend its hold over the majority class, and

in ancient society this was usually by means of a combination of superstition and

violence. Since in feudal times, religion was the principle method of control over

the majority5.

3Education Psychology

4What do we mean by Philosophy? Philosophy is an activity people undertake when they seek to

understand fundamental truths about themselves, the world in which they live, and their

relationships to the world and to each other. As an academic discipline philosophy is much the

same.5Class notions and social conditioning @ www. Worldsocialism.org


13/53

13

This socialist thinking appears more rational and true in tracking the roots of

evolution of conditioning human behavior. Apart from physical and

psychological factors that influence human behavior, sociological factors play a

major role in conditioning it for the simple reason that man is a social animal. It

is very essential to understand this aspect as individual philosophy and character

are greatly influenced by sociological factors. Un like in other countries, where

class and religion play a dominant role, predominant influence of caste hierarchy

on human behavior in India cannot be just over looked.6

Human social conditioning in India largely depends on the social status of that

individual i.e. class and the caste that he/she is born into. For example, making a

living out of hard work is a value for the working class i.e. a person who works

hard or leads his people in work is respected; where as other section considers

gaining knowledge as the highest value7. Hence the scope of sociological

influence varies based on the social background of that individual. Thisdiscussion will help us understand how a group of people who have similar

health status i.e. HIV, will have to use different means and meet different

objectives to be socially accepted and respected in their respective class and

caste. However, this argument does not undermine their collective fight for

achieving common objectives.

Culture and religious frameworks:

As humankind started living in groups and gradually in one place, it evolved a

set of guidelines and a way of life. Each group depending on their environment

has had distinctive culture of their own and so does India. India is known for its

culture and it has always remained its core strength. Similarly religion has

remained an integral part of the entire Indian tradition and a way of life. For the

majority of Indians, religion permeates every aspect of life, from commonplace

daily chores to education and politics. It is their dominance in our daily life that

makes them crucial aspects in our discussion. As a result of culture and religion

we find many norms-values, rules-regulations that declare the good and bad,

what to do and what not to, essentially conditioning our behavior in the society.

It must be noted here that both culture and religion in India have predominantly

6 Just like other social frame works that we have made for ourselves primarily to condition

human behavior or to control a group of people through power, caste has emerged as a powerful

social conditioning tool to marginalize a certain section of people in India.Undoubtedly this is

the objective reality that we have to live with even after 60 years of independence.7 For more information on how Religion and caste in India condition human behavior read

Kanche Ilayya (2005) Why I am not a Hindu? Prajasakti Publishers


14/53

14

been pro-patriarchal. The origin of the Indian idea of appropriate female

behavior can be traced to the rules laid down by Manu in 200 B.C.: "by a young

girl, by a young woman, or even by an aged one, nothing must be done

independently, even in her own house". "In childhood a female must be subject

to her father, in youth to her husband, when her lord is dead to her sons; a

woman must never be independent.8"

This powerlessness propelled by culture and religionis often identified as the key

factor in exacerbating vulnerability of women to exploitation and violence. This

discussion will enable us understand the lived experiences of women living with

HIV and the link between violence against women and HIV. It provides us an

opportunity to understand how they made a meaning of such experiences in the

broader context of power-empowerment and HIV.

Coming back to our discussion on norms and values, the good and bad, it isinteresting to note here that Indian society has in place suitable punishments for

those who dare to violate such norms or rules; the extreme of such punishment

often is out-casting such individuals. On the other hand those who adhere to it

are rewarded or respected.

Are these frameworks that condition human behavior static? No, as time

progressed these frame works have either completely disappeared or have been

reframed to suit to those conditions. A best example of such change is the change

in practices related to widows in India. As per the then prevailing practice,

widows used to live indoors with shaved heads and wearing white saris. Young

widows were strongly forbidden to re marry. It gradually changed as a result of

Rajarammohan Roy and Gurajada challenging this practice. Another example of

such change in commandments related to religion can be witnessed when Jesus

said you have heard that it was said, an eye for an eye and a tooth for a tooth.

But I say to you, do not resist an evildoer. But if anyone strikes you on the right

cheek, turn the other also.9 This change is witnessed in history whenever an

individual with stronger character intervened or challenged such beliefs or when

the society as one fought against it. The apparent examples are Mahatma Gandhi,

and Dr. B.R. Ambedkar they changed the environment by their dominantcharacters. Peoples movements against such in justice are also a best example for

8As quoted by Carol.S. Coonrod, June 1998-Chronic Hunger and the status of Women in India

9 Mathew 5: 38 Jesus clarified that commandment of eye for an eye was given by Moses taking

into consideration the stubbornness of people at that time.


15/53

15

this. We must also keep in mind that people like Hitler whose philosophy is

negative has also been able to influence the environment.

In essence, individuals are conditioned by socio-cultural and religious

frameworks that the society has prepared for itself, where each stratum of society

has for itself a set of values-beliefs and rules and regulations. Behaviors that defy

such rules are punished and vice-versa, primarily, witnessing powerful

controlling the powerless, the haves controlling have nots, the so called cultured

dominating the uncultured, denying the least brethren access to resources,

services and opportunities. However, this paradigm is not static. It keeps

changing when there is a stronger character or philosophy or when social

movements by people who have been stigmatized and discriminated arise

against such beliefs and practices.

Summary of this chapter:

Human behavior is nothing but an expression of individual character thatexhibits its philosophy towards life.

This philosophy is a result or an outcome of the influence by environment,which consists of physical, psychological and sociological factors.

Our philosophy towards life keeps changing as we encounter with newexperiences or keep getting influenced by environment.

At times our philosophy can also influence the environment around us. E.g.Gandhiji, Dr. B.R.Ambedkar, Hitler.

On the other hand, social frame works of religion, culture, caste&class thatthe society has established for its members conditions our behavior in society.

As a result of our culture and tradition, which supports patriarchal society,women are at a disadvantageous position in India. This powerlessness of

women exacerbates their vulnerability to violence and exploitation. While

understanding how women living with HIV have made a meaning of their

lived experiences, it is essential to look at them from the broader context of

Power-Empowerment-HIV.

Individual behavior that defies social frameworks is punished and behaviorthat abides by it is respected. This theoretical background is essential for us tounderstand lived experiences of people living with HIV and how they make a

meaning of it.

These social frameworks that condition human behavior are not static. Astime progressed these frame works have either completely disappeared or

have been reframed to suit to the existing conditions. E.g. Culture-Practice


16/53

16

related to Widow marriage, Religion-Moses teachings being redefinedby

Jesus.

Such change in history is witnessed when ever a stronger character orphilosophy or when social movements by people who have been stigmatized

and discriminated arise against such beliefs and practices. E.g. struggle for

Independence.


17/53

17

Chapter 2

Lived experiences of PLHIVs

This chapter presents life stories that show lived experiences of people living

with HIV and how they made a meaning of it.

Mamatas Story:

I remember to have seen her for the first time in our office. She was very tense

that day and even when she attended monthly group meetings of People Living

with HIV, she used to sit in a corner and never opened her mouth in meetings.

We had to encourage and force her to speak. But now she is a completelydifferent personvery different from what she was three years ago. This is how

Mamata was introduced to us when we approached the organization, which

supports her, for her case study.

It was a pleasant evening when we started our discussion in the office premises,

located amidst agricultural fields. As the sun prepared to take leave, even

hurrying sounds of traffic on the national highway appeared to be over powered

by the silence surrounding the fieldsat distance a trainers voice, making all

efforts to enthuse participants in the last session of the day, is mildly heard.

Groups of young girls and women tired with day long work in Tobacco units are

seen returning home. It is getting dark. As she prepared to describe her

experiences I realized that she is oblivious of her surroundings, may be because

of her stronger desire to share. to ventilate all that she has been carrying

within.

Mamatas husband died three years ago with AIDS, leaving behind a baby girl

who was later tested negative. He seems to have advised her many times to go

back to her parents saying that it is because of him that she had to face lot of

problems. But she stayed back thinking that none should blame her for leavingher husband behind when he is sick:

I never used to come out of house for any thing. After coming to know that he is

positive, he wanted to dieand intentionally neglected his health. We spent

every penny on him taking him to a hospital in a nearby state as well.but he

never controlled his behavior. He started taking more alcohol. and never cared


18/53

18

what happens to us if he is not there. He was very selfish (Turns aside not

willing to show her eyes filled with tears, even sun seems to have understood her

emotion, for he completely disappeared for the day).

Speaks after a long silence . If he had loved his wife and daughter he would

have never died like that. She was three years old when he died.

At times I find no answer when my daughter asks me where is my father?

(Pauses for a moment) I tell her that he is in another state and will come

when his work is over. Whenever I fail to meet her requirements, even if it is for

giving money to buy confectionaries, she says had my father been here, I would

have got every thing.

Reflecting on the change that took place after coming into contact with a group of

people living with HIV, she said

For many days after his death I did not come out, for fear of discrimination by

others. It took me some time to come here as I was thinking that if I go there,

others would also come to know of me. But once I came here I realized that there

are lot of people who are like methey are even in worst conditions than me.

It is only here that we share our each and every problem and get soothing. I

learnt lot of things after coming hereI was even thinking of committing

suicide. But my group members encouraged me to live for my daughter. I knewcommitting suicide takes little effort. But I dont want to leave my daughter like

he did. It is worthless to think of him . (Sobs)

Indicating the process of change that she has undergone and how it gave a new

meaning to her life, she said,

What wrong have I done? I knew it is not my faulthe made me a scapegoat.

I started thinking that there are people who live happily with BP and sugar and

HIV is just like any other illness. So why should I commit suicide.

Later we slowly started preparing nutrition powder and that enabled me to earn

a decent amount. With loan amount taken from the group I started selling sarees

and I am now able to send my daughter to a private school by paying fees.


19/53

19

Associating herself with this group has brought a lot of change in Mamata. It has

not only enabled her to come out of her own grief but also developed a desire in

her to work for others.

There are a lot of children who lost their parents to HIV and have none to take

care of them. There are women who are thrown out of their homes and go to bed

with just taking water. When I give them courage by saying few positive words I

get lot of satisfactionI feel proud of myself that I am able to help others.

When asked what is it that PLHA require most her answer reflects strong

influence of her lived experiences on her views. She said

Some people pity us. What wrong have we done to treat us that way? We feel

proud when villagers say despite her ill health she is working hard and giving a

decent life to her child. We have strength and the will to work hard and earn forour children and family but we lack resources. If we have resources which can

help us start our life afresh we can prove to the world that we are second to

none.

Ramanas Story:

Ramana is an auto driver, a foster father of two young girls and recently married

to a women living with HIV who also attends the same group meetings ofPLHIVs with him. He was very happy to share his story along with his pregnant

wife. Keeping in mind her health status we preferred to have only his story.

Ramanas life took a turn when he started living with a woman who used to be

junior artist in films:

I do not know how we got it but it is she who was first bedridden. When the

news of her death in a Government hospital reached village I was down with

jaundice and I was not allowed to see her. Doctor seems to have said that if she is

not buried within four hours, her body will get spoiled and that might causeproblem to the public. Four guys who brought her body in an auto at 9 o clock

in the night.. took alcohol, covered their hands and legs with plastic covers and

buried her outside the village.

It was her desire to get the two girls married before she is dead and we managed

to perform marriage of one. The other girl is studying 9 th class now. When we


20/53

20

started living together this girl was just 2-3 years old and she grew up with the

feeling that I am her father. I always felt that after her death it is my

responsibility to give them a decent life.

But deep in my heart I always had a feeling that I can never hear a child of my

own calling me daddy. When I heard that PLHIVs also could marry and have

children I immediately jumped at the idea. And I am very glad that I am going to

have my own child.

When asked what made him to take care of those two girls who are not

biologically his own, he revealed after she died I realized that all those who I

believed had relation with her are healthy even today. I started gathering

information on HIV from individuals and from this organization and as a result

of that information, I recollected that I used have symptoms of HIV even before I

started living with her.

That feeling was very strongI started feeling that because of me she got HIV

and it is I who took away their mother from them It is my responsibility to see

that they both settle down in their life well.


21/53

21

Feelings of Guilt and Shame


22/53

22

2.1 Discussion: Feelings of Guilt and Shame

From the above two stories one thing that appears common is that their lived

experience of living HIV has layers of experiences which can not be just fitted

into a single frame work. They range from feelings of guilt and shame to stigmadiscrimination and denial. We shall in this section limit our discussion to feelings

of guilt and shame as we are going to have detailed discussion on the other

aspects in the chapters to come.

First thing that Mamata had to cope with is the feeling that her husband

intentionally desired to die by doing things, which will further worsen his

health. She has also to deal with feelings that she is made a scapegoat by her

husband and the same feeling appears in Ramana, of course from the other side

of the fence i.e. a feeling that it is because of him that two young girls have lost

their mother. Guilty feelings are due to the cognitive dissonance (Festinger, 1957)

that arises from the gap between our self-image as a law-abiding, good person

and the evidence of our actions. It is said that guilt and shame are emotions that

rise after a wrongdoing from ones own perspective based on their cultural values.

One distinction that we must understand here is that there is a difference

between guilt and shame, guilt is about our actions taken; shame is about the

self-behavior10. Psychologists argue that while moderate ("normal") guilt

promotes healthy personal decisions, extreme feelings of guilt and shame harm

individuals. It means, a person who allows his guilt feeling to over powerhim/her takes the extreme steps such as nurturing feelings of wanting to die or

taking up alcohol etc to suppress that guilt. Recent studies that looked into

suicidal behaviors in U.S say that HIV-positive adults and those living with

AIDS are more likely to report having considered suicide as an option if they

have high levels of emotional distress (Darcy H. Granello and Paul F. Granello

2007).

It is observed that given the patriarchal mindset of men in India, emotional

distress as a result of extreme feelings of guilt and shame is more prevalent inmen than in women and that is the reason why death rate of men living with

HIV is more and faster than women. In addition to that it is observed that

women are more inclined to disclose their HIV status than men11. Nevertheless,

10www.findingmia.com11

This phenomena of Men living with HIV comparatively having lesser life expectancy with

illness, and women more willing to disclose their HIV status needs further exploration with due


23/53

23

the lived experiences that we have witnessed above give ample evidence to the

fact that individuals can overcome feelings of guilt and shame. While Mamata

has been able to over come her feelings and found a meaning that she need not

commit suicide in the association of a group of people like her, moderate guilt of

Ramana helped him take a healthy personal decision i.e. taking up responsibility

of two children who are not biologically his own.

Hence, it brings us to the conclusion that it has got to do with our own mind and

primarily depends on the way we look at HIV from the perspective of our own

cultural values. If we manage to replace distress with moderate guilt, we will be

able to take healthy personal decisions that will enable us to come to terms with

our feelings and be peaceful ever after. Answers to our distress are indeed within

us. Permit me to tell you a beautiful story that encourages us to explore the

power within.

One day a person visited a teacher in his monastery. The teacher asked

What do you seek?

Enlightenment replied the man.

You have your own treasure house. Why do you search outside? teacher asked

The man inquired, Where is my treasure house?

The teacher answered, What you are asking is your treasure house

The man was delighted! Ever after he urged his friends: open your own treasure

house and use those treasures

Believe that we all have the power within us, a big treasure house. All that we

are required to do is to recognize it and use it so that we may never allow

feelings of guilt and shame and distress to overpower us. Let us now move on toexplore lived experiences of stigma and discrimination.

support of data. The author out of his experiences of working with PLHIV for nearly four years

has been able to come to this conclusion.


24/53

24

Stigma and Discrimination

Photograph here


25/53

25

2.2 Stigma and Discrimination:

In India, like most developing countries, apart from the other formal and

informal institutions, family and community are vital aspects of social structure.

These represent concentric circles of an individuals social surroundings andhold immense potential for strength and support during times of need and crises.

(Dr. V. A. S. Krishna et al). Nevertheless, in the case of HIV, it has often been

observed that stigma has been the most stressful feature burdening the family

and the consequential reduction of social support systems (DCruz -2002 and

Bharat- 1999). Stigma is also described an attribute that is deeply discrediting

and that reduces the bearer from a whole and usual person to a tainted,

discounted one (Goffman, 1963). It means that a person who is stigmatized is

treated as a tainted and discounted one and his role in the family and society gets

devalued (Wolfensberger 1998).

Evidently, dominant theories say that a person who lives the experiences of

stigma often withdraws from active social roles. There are two lines of thinking

that are apparent here i). Because of HIV a person is stigmatized and

discriminated ii). A social role of person who is discriminated gets devalued and

he/she withdraws from active social role.

We shall now limit our discussion to lived experiences of stigma and

discrimination. It is indeed true that Stigma has been a powerful tool of social

control and can be used to marginalize, exclude and exercise power over

individuals who show certain characteristics. As we have discussed earlier it is

indeed the objective reality. From the moment of identification of HIV/AIDS,

social response of fear, denial, Stigma and discrimination have accompanied the

epidemic, most importantly denying access to care and support services for those

living with HIV and their families. Ramanas story also brings into light this

aspect of lived experience. His wife being buried by men who covered

themselves with plastic covers is a glaring example of social response of fear,

resulting into stigmatization.

Rubainas storyalso confirms this fact.

My husband used to sell saris going around villages. When I first came to know

that we both are positive, I could not think of any thing else. I just clung to my

mother for three days and ate nothing.


26/53

26

Narrating an incident of stigma and discrimination that still remained afresh in

her memory, Rubaina said,

They were actually our relatives. A marriage proposal for my sister was almost

finalized and they came to know of this news that we both are infected with

HIV. (Pauses for a minute)

There was no news from them for few days and when my parents enquired,

they seem to have told others that how can we accept a girl whose sister is

having AIDS. With that my parents started grumbling. and finally we had to

come out of that house and started living in a temporary shack made outside the

village with bare minimum facilities. There was no income from any source and

children had to be admitted in a government school. Looking at my active

participation in monthly meetings of PLHIV, this organization has appointed meas a peer counselor after getting trained on basic and advanced counseling skills.

I visit neighboring villages giving hope to people like me, often telling them my

own story. My children are now going to a private school and my husband looks

after the petty shop that we have been able start with the support of our network

of positive people.

I am sure we require no further description to prove our first point that people

living with HIV are prone to stigma and discrimination. Interestingly, as our

interaction with other PLHIVs progressed we gained a different view altogetherand the concept of stigma appeared to us as endlessly elastic; an idea that has so

much scope it cannot hold its core (Stafford & Scott 1986, cited in Weiss &

Ramakrishna 2001). This point of view is supported by Nelamma and

Nagalaxmis stories. Our focus in this section is to see lived experiences of

PLHIVs, which we believe are beyond the definition of stigma and

discrimination.


27/53

27

Beyond Stigma & Discrimination: Twin Pandemics

Photograph here


28/53

28

2.3 Violence and Exploitation

Neelammas story:

A first look at Neelamma gives anyone who interacts with her a feeling that sheis talkative and pure at heart a typical countryside woman who manages a

petty shop to give a better life to her daughter. Just as the sea beside her small

hut, her heart carries huge feelings of pain and suffering after her husband and a

baby boy died of AIDS. Every word that she speaks carries her determination

that she should lead her life respectably in the society. Her world completely

changed when they returned from a construction work in Hyderabad:

When we returned to the village to visit his ailing mother who was on

deathbed. looking at him, his friends said that he would die even before hismother. By that time he drastically lost his weight and used to cough like

anything.

On the villagers advice we got ourselves tested. it was told that except my

daughter all the three of us have got HIV. As soon as his family came to know

about this, my father-in-law with the support of his other three sons threatened

us to leave their home saying if the air that you breathe touches us we will also

get AIDS.

I had to beg village elders to allow us stay in a small hut where animals are tied

Recounting toughest times that she has been forced to face at the family level,

especially with the attitude of her husband, Nelamma said,

After this incident happened, one day, he took little money left with us and said

that he is going to Madras for treatment.and he never returned. (Eyes filled

with tears) We do not know whether he is still alivethat is the reason why I

have not removed my sindur and holy thread.. Soon my son also died.

(Pauses for a moment)

One day a girl who identified herself to be representative of a voluntary

organization came to our house and suggested that I should attend one of the

monthly meetings of people who live in similar conditions like me. Seeing 120-

130 people in the first meeting that I attended, I started feeling betterthinking

that there are many people like me.


29/53

29

We come from different villages and even if we spend together for one hour I

get the desire and confidence to live for ten more years. With the support of the

group I started a petty shop and I am now confident that I can save enough

money for my daughter to give her in marriage to my brother and die

peacefully.

Sharing the mantra for most of the villagers respecting her for the last seven

years despite knowing that she is positive Nelamma said

If I behave well with others and cause no harm to them God will take care of my

family and me. It is because of my behavior that villagers respect me. They

discuss among themselves saying this girl has been living with HIV since seven

years, yet harmed none of the villagers. More over by making a living on her

own she is supporting her daughter. We should say no word against her.

Her world took an abrupt turn when she allowed her father-in-law to stay with

them as his three sons left him on the street. I thought for a moment that had my

son been alive would have I thought it difficult to feed him (Pauses for a

moment)

One night he slowly crawled on to my bed(there was hesitation in her

eyes)..he is just like my fatherif I make a mistake.he has every right to

question me and punish me.but what do I doif a sixty year man tries to do

like that. I told my relatives about it and they seriously warned him. But he stillcomes here

Usually I stay very happy and eat wellnow I am unable to eat and I have

already lost some weighttell me what should I do with him (questioned

Neelamma with tears rolling down her face)

Nagalaxmis story:

Would you like to fight the case asked judge in the court.I said I lost every thing my lord.this small piece of land is my only hope. I will

continue to fight until I get justice my lord.

Nagalaxmi is an ever-smiling woman. When we first met her during a group

meeting of PLHIVs, probably a year ago, we still remember to have seen her


30/53

30

being very vocal in the meeting, sharing her experiences with the groupwith a

confident smile always on her face.

When we reached her village and the colony that she lives in, like in any typical

upper caste community, we had to face the curious eyes peeping at us from their

windows as we reached her house. Nagalaxmis lives in that rather newly

constructed two-room house alone.

Narrating her story she said,

When he was alive I did not face any problem. When he died his family

members wanted to divide the propertyall expenses on his health were

counted in my share and I was given a small piece of agricultural land, which I

immediately sold off to clear debts on his name. I was later asked to go out of

their home and with the little money left I was able to construct a small house inthe vacant portion of our common property which was not yet divided.

My brother-in-law and his mother picked up an argument one day asking me to

leave my house. They mercilessly beat me and a neighbor who came to my

rescue. It is at that point that I came in contact with a group of people working

for people like me. It is with their support that I registered a case with the police.

When there was no progress in the case I again approached District collector who

ordered Police and Mandal revenue officials to look into my case. They strongly

warned my brother-in-law not to interfere in my matters.

Villagers now say that it is difficult to argue with me because I have become

talkative and learnt lot of things after attending meetings (smiles...) they also say

that I know who is who of the district and that I can put anyone who harms me

behind the bars.

Recollecting painful experiences that she has been facing as a result of HIV status

she shared that she was forced to stop going for work in a bottling company.

When she tried her luck as a construction labor she had to face irritating

questions of her male colleagues to lure her asking, dont you have any desires?Dont you wish to get married again? Dont you wish to have children?

Determined in her mind as a result of her previous experiences she says

Lot of people ask me you are still young and look healthywhy dont you get

married? I never entertained such thoughts. I was given in marriage at the age of


31/53

31

14 and for some reason I refused to leave my parents house. Later I married this

man. Arent we seeing lot of cases where a woman trusts a man and he leaves

her off after spending all the property?

Who knows what is there in their mind. I dont want to take another chance. If

this house legally becomes mine at least somebody or the other will look after me

when I am bedriddenthey will at least have this house to keep my body for

some time when I die. Most importantly, I do not wish to go back to my parents

and trouble my brother. They respect me if I stay here and survive on my own

than depending on them. (Smiles again).

Now her case is in the court and Nagalaxmi is confident that judgment will

come in favor of her because judge and the police have been very sympathetic

and supportive when they came to know that she is living with HIV.

Discussion:

Stigma has been used to explain a wide range of different problems. It has been

identified as a key reason for reluctance by PLHIVs to disclose their condition, or

come forward for voluntary counseling and testing (VCT) and healthcare; it is

also identified as a significant cause of non-adherence to treatments (Black &

Miles 2002; Bond et al. 2002). It has also been used to explain negative attitudes

and discrimination against PLHIVs in the family, at work, in the community and

in healthcare environments (Bollinger 2002; Malcolm, Aggleton, Bronfman,Galvao, Mane & Verall 1998; POLICY project et al. 2003a; Richter 2001). Quite

often stigma and discrimination are projected or highlighted as the only issue

that is of concern to the people living with HIV.

But there are issues that are beyond stigma and these two stories are evidence to

that fact. For various reasons we have often limited our focus to stigma and discrimination. Probably, that is the reason why majority of HIV/AIDS

interventions are being primarily focused on enhancing awareness levels of

communities. In the process deeper issues of women that were hitherto notspoken off received less attention.

It is obvious that exploitative situations that are faced by Neelamma and

Nagalaxmi are in no way a part of the definition of stigma and discrimination,

even if we try to stretch its scope further. They are in fact an outcome of their

vulnerability that is being exacerbated by their HIV status. In other words they


32/53

32

are yet another form of violence and exploitation which has its roots in their

vulnerable status. In Neelammas words we understand that it is these

experiences that are more painful and stressful than experiences of stigma and

discrimination, because violence and exploitation are issues that are generally

overlooked by general public and difficult to share with any body by those who

have undergone them.


33/53

33

CHAPTER 3PLHIVs making a meaning of lived experiences of

Stigma &Discrimination and Violence & Exploitation

From the withered tree, a flower blooms

In the above sections there have been ample examples to understand how

feelings of guilt and shame have been understood and dealt with by the persons

who have lived those experiences. This chapter highlights how people living

with HIV have made a meaning of their lived experiences that are specific to

stigma & discrimination and violence & Exploitation. Following two stories are

best examples of how experiences of stigma and discrimination have influenced

thinking and behavior of those who have undergone them.

Sujathas story:

Sujatha is an active member of the organization that works for PLHIVs. She hasbeen instrumental in encouraging a lot of PLHIVs in her district to come together

and form an association. She can be best described by two incidents that she

fondly remembers.

It was a national level consultation with people living with HIV held at Delhi

and I had the opportunity to represent my district. Members of the parliament

attended meeting and a lot of people were sharing their problems with the MPs

in English. I felt that I am unable to share problems of our people, as I am unable

to understand their language. I immediately got up and requested them toexplain all that they have talked so far in my mother tongue. They finally gave a

translator and I was able to share problems of PLHIVs in our district. Similarly,

when an interaction meeting between Government officials and PLHIVs was

organized in the district, I boldly said in public that Government is doing no

programme, which directly helps our PLHIVs and children. Even district

collector had no answer then. As a group they have achieved many and she is an

encyclopedia of all such successful stories.

A simple housewife married at 14 years of age, who never came out of house

when her husband was alive turned community organizer. She proudly says thather relatives all of whom are educated & employees and belong to a higher caste

now appreciate her work. When ever they find PLHIVs they refer them to me

saying that our girl is working with people like you.

It is very interesting to see how she tackled her first case when she joined this job.


34/53

34

It was my first case and a very tough one. It took many days even to approach

her. She got married at a very young age to a man who was living with HIV. He

knew it but he still got married and died after a month. Village youth used to

tease her and say all bad things.when she complained to the village elders,

parents of those youth seems to have blamed her in return saying as you lost

your husband you are trying to spoil our children. She got vexed and started

thinking that

For no fault of mine they are harassing me and I shall make all of them suffer

like me..

She then started attracting village men and by then it was believed that a lot of

villagers got HIV because of her. They were almost ready to kill her and I had to

do every thing to make her understand what she is doing. Finally she realized

and she is happy now.

Almost all the cases that I have seen are of women suffering for no fault of theirs

and they all have different issuesand this idea motivated us to have a common

group for women living with HIV. We initially started off with ten women and

we have now reached nearly 200 said sujatha proudly.

Venkatalaxmis story:Venkata Laxmi is an epitome of patience and has boundless determination to be

independent. She was forced to take up responsibility of sustaining threechildren when her husband who was a great lover of driving lorry was tested

positive.

He was a very proud man.he was even ashamed to take money from me for

his expenses. He tried to work until he can no longer work and when he knew

that I am taking up small jobs like working in a telephone booth to make both

ends meethe hesitatingly accepted but soon said no.

My mother-in-law and her family were against me from the beginning as hemarried me against their wishes. Soon after marriage they wanted us to live

separately and he kept me in an area, which was almost like a forest, and only

people that were found in that area were prostitutes Whenever he was out on

duty I used to live there alone bolting myself in, with out sleeping for days until

he returned. I later realized that those experiences have made me stronger and

gave me confidence that I can live independently.


35/53

35

There was no support from any body when he was bedridden. I tried to do

every thing possible to support my family. Before working as a construction

labor, one organization provided me loan to start a petty shop but my relatives

objected to it. Again they called me back and appointed me as a teacher for Rs

500/- remuneration per month. An opportunity to participate in public awareness

campaigns of Government came at that time and they promised to pay me. My

husband refused to allow but I strongly wanted to go because I can gain more

knowledge on HIV and above all I badly needed a job to support my family.

Soon I was appointed as a PPTC out reach worker.

I now interact with lot of people who are living with HIV. I counsel them and

motivate them. I feel proud when I see them happy and healthy. But the idea that

I am not able to save my husband for more than a year is still daunting me...

Looking at all that I was doing to save him he used to ask me to allow him die..Iused to just laugh over it ..It is because of these organizations that I am able to

rebuild my life again (Said Venkata Laxmi with tears rolling down her face).

Venkata Laxmi feels that all that a person living with HIV needs is a person who

can give soothing and medicines at the right time. If both are ensured they can

live happily just like a normal person.

Discussion:

In the above section, we see two stories that are contradictory in nature. With

reference to making a meaning of lived experiences of stigma and discrimination,

we find that how in Sujathas story a stigmatized woman took extreme step of

making others suffer like her while Venkata laxmis determination to be

independent has become stronger when she faced with experiences of denial,

non-cooperation and neglect by her family members.

I later realized that those experiences have made me stronger and gave me

confidence that I can live independently certainly indicate that her earlier

experiences have made her stronger and the meaning that she derived from it

has enabled her continue her life positively.


36/53

36

With reference to lived experiences of violence and exploitation, there is growing

evidence linking the epidemic of HIV and violence against women12. These

evidences say that the most common form of violence against women globally is

abuse by intimate male partners. In general, from 10% to 50% of women

worldwide have been physically assaulted by a male partner in their lifetime13.

There are different ways in which the epidemics of HIV and violence overlap in

the context of womens lives. As we discussed earlier, HIV and the vulnerability

to violence and exploitation feeds voraciously on poverty and gender inequality.

Its hunger is further supported by societal and cultural attitudes and norms,

which rigidly prescribe what is considered appropriate behavior, limit womens

power and make it hard to opt out of abusive or violent relationships, promote

expectations of dependence on men, a dependence further anchored by

poverty14.

When Mamata thought that she should not go back to her parents becausesociety might think that she has left her husband (who was abusive to himself),

certainly has its root in the societal and cultural attitudes. On the other hand, in

the case of Nagalaxmi we find that her experiences and the values that her

community holds high have made her determination stronger to be independent

and fight for her piece of land. Hence, it can be concluded that our responses to

experiences of violation and exploitation also largely guided by our social and

cultural background. This discussion takes us back to our earlier argument on

socio-economic and cultural context within which we wished to understand

lived experiences of PLHIV.

It is also apparent from the above seven stories that they have clearly under gone

a process of change in their behavior. We find that these behaviors are

determined or influenced by a stimulus i.e. experiences. This conclusion brings

us back to our initial discussion on evolution of human behavior and influence of

social hereditary on human behavior. Let us have an elaborate discussion on

how these two factors have remained an underlying principle in all the seven

stories.

12 Maman S, Campbell J, Sweat M, Gielen A. The intersections of HIV and violence: directions for

future research and interventions. Soc Sci Med. 2000; 50: 459478.13 As quoted in HIV-Positive Women Report More Lifetime Partner Violence: Findings From a

Voluntary Counseling and Testing Clinic in Dar es Salaam, Tanzania14Change, Choice and Power: Young women, Livelihoods and HIV prevention,

IPPF/UNFPA/Young Positives


37/53

37

Chapter 4Understanding lived experiences vis--vis Evolution of human

behavior

In the first chapter, we have seen that human behavior is a result of strong

influence by physical-psychological and sociological environment of that

individual. Each individual develops his/her own philosophy towards life basedon his environment and lived experiences right from the time when they are in

their mothers womb. Research studies have even proved how a child in the

womb develops certain feelings based on the environment in which mother lives.

A small story in Mahabharata says that one day Lord Krishna was explaining

his sister Subhadra, about battlefield techniques and how a warrior has to enter

into padmavyuha (a strategy of entering into a circle of enemy warriors and

coming out successfully). In the middle of the story he suddenly noticed that

while his sister dozed off, the baby boy in her womb was actually listening to

him. He abruptly stopped the story and went away. A few years later, when the

great war of Pandvas and Kouravas started, Abhimanyu, that baby boy who

listened to the half story managed to break into the circle of Kourava warriors

but died a courageous death unable to come out of that vyuha. We have also

heard no. of stories on how Sivaji, a great Maratha warrior got inspired by stories

that his mother used to tell him in his childhood. Psychologists have ample

evidence to prove that their environment does influence individuals.

It means that in our context, lived experiences of PLHIVs too should have had its

influence on the behavior of individuals and developed a philosophy of theirown towards their life which gets exhibited by their behavior and character. Let

us now examine whether lived experiences have any role in influencing behavior

of seven stories that we have just seen and if it did influence is it positive or

negative?

What does this Chapter explore?

How behavior of People living with HIV isinfluenced by their lived experiences?


38/53

38

Though all the seven stories have under gone this process of change, it is very

visible in the story of Nagalaxmi.

experience of a failed first marriage at an early age

..experiences of others who have failed to have a successful life when they

started living with another man when husband died and how society treated

them

..experiences of women who were left by such men when all that they have is

spent awayhas helped Nagalaxmi develop a strong philosophy that

such relations do not work and hence she would never get married again. Such

experiences have also led her believe that if she has property some body or the

other will look after her when she is bedridden..at least for the sake of property.

Her behavior of giving a tough fight to her mother-in-laws family, despite their

threats display her character that formed out of this philosophy. Thisunderstanding in her is also a result of strong belief that her community upholds

as a value i.e. having property will ensure respect and better treatment by family

members.

It is also clear from the stories that lived experiences have the potential to create

negative philosophy in us i.e. when we under go experiences that are stronger

than our character there is an equal chance to develop a negative philosophy. Let

us examine the difficult case dealt by Sujatha.

Because of her experiences of getting married to a person who knew that he is

HIV positive .his early death and stigma & discrimination that she

has under gone.enabled her to conclude that I shall make them all

suffer like me. It is in fact a negative philosophy developed out of her lived

experiences and her behavior of attracting village men indicates that her

character and behavior are influenced by that philosophy towards life and

community. Is negative philosophy static? Further reading of her story reveals

that she has been able to understand what she was doing to the community and

later changed as result of intervention by Sujatha. Hence, it can be concluded that

a negative philosophy can be changed with a positive environment or stimulus.


39/53

39

From Purposelessness to Purposeful living:

An underlying development that is apparent in all the stories is a change that has

happened with regard to their purpose of life. As a result of a new philosophy

developed with the influence of lived experiences, each individual identifies anew purpose for their life. It is this purpose that sustains them or keeps them

alive. Let us examine stories of Mamatha and Nelamma.

Mamatha who lived with experiences of her husband wanting to die

intentionally.not caring for his family almost driven her to a state where she

considered the idea of committing suicide but restrained herself from doing so

because of her child. She did not want to leave her child as he did. Giving

her child a decent life is her purpose of life now. From the words of Neelamma

we also understand that her child is her life now and all that she is doing is to

save some money for her marriage and then die peacefully once her marriage is

over.

Beyond individual purpose:

Interestingly, Sujathas story gives us a different perspective with regard to

developing a purpose for life. Having played a key role in identifying a lot of

women who are living with HIV, she was moved to find out that women have lot

of issues which they are unable to address individually..she also observed that

in most of the cases, it is women who are made scapegoats by theirhusbands. these experiences have given birth to a idea of

collectivizing all women living with HIV in her districtshe proudly says it is

with such ideas of hate towards men that we wanted to have our own network

and men have no place here.

Her purpose of collectivizing a group of women who are living in similar

conditions seems to have won her some praise from her family members who

now send cases of PLHIVs to me saying that our girl is working for people like

you. This observation takes us to another level of thinking to understand whydoes society, which once stigmatized and discriminated takes a completely

different stance.


40/53

40

Chapter 5

Understanding social frame works of good and badRegaining Lost Pride-In the light of social role valorization theory

This chapter deals with two key questions before us. While one question is with

regard to why society that once stigmatized and discriminated an individual

takes a different stand? Second question attempts to understand dominant

theories which claim that individuals that under go stigma and discrimination

with draw from their active social roles. Before we understand these two

questions let us go back to our discussion on social frame works that condition

human behavior as answers to these two questions can be found in that

perspective.

6.1 Playing roles that are socially accepted: The Mantra

Every society develops social conditioning mechanisms that condition an

individuals behavior to suit to the roles that are expected to be played by that

society. Indian society is primarily classified into four sections based on the work

that they are expected do. While one section of society is expected to take care of

production, second section of the community is expected to protect society from

outsiders. While the third section is expected to engage in business and make

money, the fourth section is expected to mediate between man and God.

Understanding this classification is important, as social conditioning varies from

one section to the other. Let us understand this more clearly. A person who

belongs to a production class is respected when his/her role of production is

effectively played. Hence working hard is a value in that section of Indian

society. A woman who belongs to this section is respected if she works hard to

feed her family, even if her husband is no longer alive, but for other sections a

woman going out to work may not be necessarily a value15.

Nelammas story supports our earlier argument well. Her community respects

her for the reason that she is working hard to give a decent life to her daughter.Where as Venkata laxmi is hesitatingly allowed to work by husband and

relatives who are obviously under the influence of social conditioning frame

works of their community. Our argument becomes stronger when we find that

Sujatha is accepted and respected by her family because she is now playing a role

15Kanche Ilayya (2005) Why I am not a Hindu, Prajasakti Publications


41/53

41

of leading a group of women, a value which is in tune with her relatives who are

educated, job holders and belong to a higher community.

These changes evidently support our earlier argument that though health status of

individuals is similar i.e. HIV, they have different parameters to meet in order that

their society respect them or treat them well. Apart from this, there are other social

conditioning values, which determine why a person living with HIV is respected

by the society. In the case of Rubaina we observe that her mother-in-laws family,

which forced them out of home, has started coming back once they saw that we

are living well. There is a visible improvement in the health and economic

condition of that couple. Hence, it is evident that improvement in living

conditions of a person living with HIV is another reason why society takes a

different approach in their behavior.

Another strong reason is our behavior itself. Village elders respect Nelammabecause though she is living with HIV for the past seven years she has not harmed

any body and we should say no word against her. A strong motivating factor for

her positive behavior is her strong belief in God he will take care of us well if I do

no wrong. Hence our fear of God develops a positive behavior in us because of

which we will get respected by society. Spirituality and religion have a significant

positive influence on terminally ill persons and have been evidently seen as

important coping strategies that are also used by chronically ill (Reed 1987).

Above description answers our second question as well. Our seven stories clearlyshow that experiences of stigma and discrimination have not pushed them back in

their society and neither have they shown any symptoms of withdrawing from

active social roles.

When faced with experiences of stigma they have either developed amechanism of adapting to the social structure like Neelamma who developed

a positive behavior to adjust within the system

Or such experiences have forced them to develop a negative behaviortowards the system. Whenever individuals behaved within those social frame

works they are respected or not stigmatized but when behavior turned out to be negative they are further stigmatized. A best example to this extreme

condition is an example of villagers who were planning to kill a positive

woman who was attracting village men.


42/53

42

6.2 The Third Force: Challenging the system:

The third and interesting response of PLHIVs to stigma and discrimination is

challenging the system. When individuals who undergo such feelings turn against

injustice and fight for their own rights they are obviously respected or feared by

the society16. Nagalaxmis neighbors developed a sort of appreciation or

admiration for her because she ..learnt lot of things, her mother-in-law and

her family fear to harm her because she can put them behind bars if they try to do

so. She is free because she fought for that freedom and she fought for her rights. In

other words she challenged the system and because of that she is respected. She

has had a different approach towards her life i.e. a different philosophy. We can

also observe here that her strong philosophy has influenced the environment

around her.

Hence these stories challenge the dominant theories that say, individualswithdraw from active social roles when they are stigmatized. Rather, because of

their response to such experiences they get respected. Social role valorization

theory (Lemay, 1995; Wolfensberger, 1972) also supports this argument. As per

this theory if a person holds valued social roles, that person is highly likely to

receive from society those good things in life that are available to that society.

Hence by playing a positive role, which is socially, valued or respected as per the

social frameworks of that society, a person living with HIV can aspire to get back

their lost pride and have access and availability to services, which is their right.

Following is the action that is suggested by this theory to enhance social images ofindividuals and at the same time their personal competencies.

16Such efforts shall necessarily function within democratic principles of fighting for rights.


43/53

43

Table 1. Social Role Valorization Action Implications

Primarily To Enhance Social ImagesPrimarily to Enhance Personal

Competencies

Level Individual Person

Arranging Physical & Social Conditions

for a Specific Individual that are Likely toEnhance Positive Perceptions of That

Individual by Others

Arranging Physical & Social

Conditions for a specificIndividual that are Likely to

Enhance the Competencies of

That Individual

OfPrimary Social

Systems

Arranging Physical & Social Systems that

are Likely to Enhance Positive Perceptions

of a Person In & Via this System


Conditions of A Person's Primary

Social System that are Likely to

Enhance that Person's

Competencies

Action

Intermediate &

Secondary Social

Systems

Arranging Physical & Social Conditions in

Secondary Social Systems that are Likely

to Enhance Positive Perceptions-In & Via

Those Systems-of People in Them, &Others Like Them


Conditions in Secondary Social

Systems that are Likely To

Enhance the Competencies ofPeople in Them

Entire Society of an

Individual, Group

or Class of People

Arranging Physical & Social Conditions

Throughout Society that Are Likely to

Enhance Positive Perceptions of Classes


Conditions Throughout Society

that Are Likely to Enhance the

competencies of Classes of People

Hence as per the Social role valorization a person in his individual capacity gets

respected or recognized or treated equally by society when his/her individual

competencies are enhanced17. In the above stories we observe that all most all the

cases, by playing a better role in their family and in community have evidentlyshown to their communities that their individual competencies have significantly

improved. While their group and community around, as a primary social system

ensures that its members capacities are enhanced, voluntary organizations that

support them act as intermediary or secondary social system that facilitates this

progress. Above secondary social system we have the state and other civil society

organizations that influence this change.

A similar effort is supposed to be made at each level by respective players to

enhance social images of people living with HIV. It is evident that it has not

happened, as it should have. While we try to understand the roles that are so farplayed by primary and intermediary social systems i.e. groups of PLHIVs and

voluntary organizations in the next chapter, let us understand the role played by

the state.

17Probably this is the reason why a rich man living with HIV is still respected by the society and

his chances of being stigmatized and discriminated by the society are very minimal.


44/53

44

Sujatha proudly shared this experience with us. In a meeting of PLHIVs with

Government officials at district level I boldly said in public that Government is

doing no programme which directly helps our PLHIVs and children. Even

district collector had no answer then who had attended the meeting.

Role of state in ensuring well-being of all its citizens and especially its role in

responding to an epidemic like HIV is very crucial. It is the state which can

ensure availability and accessibility to medical services through its wide spread

mechanism. It is the state, which can ensure well being of families that are

affected by HIV through various programmes that would capacitate them and

strengthen their livelihood base. Nevertheless, as Sujatha pointed out, state has

been busy promoting mass social awareness programmes because it is time to

correct an impression given by it that HIV is a dreadful disease. It immersed

itself in campaigns because it always believed that problems of people living

with HIV could be addressed by enhancing awareness levels on HIV in generalcommunity. In other words, it never seemed to have tried to look beyond stigma

and discrimination. When we look at this issue in the context of service delivery

of state, Sujathas statement that no programme of Government is directly

helping children and families of PLHIVs, can be understood as that either there

are indeed no programmes of that kind initiated by the state or these

programmes have failed to show any impact on their lives and achieve the

trickle down effect. It is in this context that advocacy and lobbying or

influencing policies of the state becomes a crucial aspect in this issue and that is

what Sujatha was trying to do


45/53

45

Chapter 6

Advocacy vis--vis Power and Empowerment

Let us now understand Sujathas anguish in a broader context. Questions that we

seek to answer here are how can the state be held responsible for our wellbeing? How does Advocacy help in ensuring our wellbeing as PLHIV?

Answer to our first question is in our collective struggle for independence.

Independence, after decades of British rule, economic under development, gross

poverty, social inequality and injustice, mean to us an epoch that was imbued

with a new vision18, a collective vision that aroused expectations of a rapid rise in

personal and societal prosperity, of social and economic equity and equality, of

the good life. We wanted to achieve this under the democratic framework, where

our elected peoples representatives and leaders commit themselves for the broader development of this nation. It is in this context that the state and its

mechanism derive power and legitimacy from people. It is this power that is

bestowed upon the state, which makes it responsible for our well being.

Let us now move on to our second question by understanding what we mean by

power. With reference to our discussion on lived experiences of PLHIV, let us

limit ourselves to the other side of power, in which, the most commonly

recognized form of power is power over. Power is-holding someone elses

power in your hand and showing it to them19 i.e. it involves taking it from some

one else and then using it to dominate, prevent others from gaining it essentiallyusing repression, wealth, force, coercion, discrimination, corruption and abuse.

While in the case of state, access to services and equal treatment is denied to a

section of its citizens as a result of policies and practices, that are made out of its

power, power exercised at individual levels with the support of social and

cultural systems, deny individuals on whom that power is exercised, their

freedom to take decisions for themselves. It is this powerlessness that exacerbates

vulnerability of PLHIVs in general and of women living with HIV in particular

to violence and exploitation. So, do we keep quiet and accept it as our fate? No,when these aspirations of people are not met, when promises are not delivered,

when their basic rights are violated, people have their own methods of

communicating the same to the people in power so that they correct themselves.

18 Bipin Chandra, Mridula Mukherjee, Aditya Mukherjee (2000) India after Independence 1947-

2000, Penguin Books19

Sarkar Raj subtitle


46/53

46

Advocacy and lobbying is one such tool, which is often used by peoples

organizations to impress upon state and the concerned people to recognize the

importance of addressing an issue in hand. Veneklasen, L Miller V (2002) in their

Power and Empowerment say that it is indeed the advocacy that can address this

problem and they suggest three alternatives to Power over which can also lead to

empowerment. They are Power with, Power to and Power within.

Describing empowerment process, Cheryl E. Czuba (1999) insists that individual

change is a pre requisite for social change and empowerment, a change where

they have access to power and can become partners in solving the complex issues

facing us. This synthesis of individual and collective change (Wilson, 1996; Florin

& Wandersman, 1990; Speer & Hughey, 1995) is our understanding of an

empowerment process. Seven stories that we have seen above have

demonstrated such change at individual level and by being active members in

networks of PLHIV they have also been part of a collective change. Can we map

this change so that others in similar conditions also benefit from this?

6.1 Mapping DNA of process of change:

As we discussed earlier, the first change that we witnessed in the seven stories is

their willingness to overcome feelings of guilt and shame. Lived experiences ofstigma&discrimination and Violence and exploitation are the second stage. It is

evident from the stories that it is the association/network that has enabled them

realize their power within. As Mamta rightly said it is in the association of a

group of people like her that she has been able to develop a new purpose for life and

apurpose to live. It also helps them adopt a socially acceptable behavior.

Power with has to do with finding common ground among different interest

Destiny in Our Hands-Rajesh-Sent to GB

Documents