Narrative Inquiry on

Lived experiences of People living with HIV who

braved…the rising tide

Academy of Gandhian Studies

Center for Research, Training and Social Action
 CONTENTS

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 ...................................................................................3

2.1 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-à-vis evolution of human behavior……………………2

4.1From purposelessness to Purposeful situation At individual level&group level…………………………2

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 system…………………………………………………………………2

Chapter 6: Advocacy vis-à-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..............................................................................................50

7.1 General Community behavior Vis-à-vis Evolution of Human Behavior...................................................2
7.2 Demystifying Sympathy and Empowerment………………………………………………………….…2

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FOREWORD

3
 Dedicated to Sunita, Dhanalakshmi, Adilakshami,
Bibi, Mulamma, Nagendramma and Ramana with out
whose support this research would not have been
possible…

4
 ACKNOWLEDGEMENTS
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 the
coalition 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.

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 OVERVIEW

1
HIV 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.

6
 I. CHANGE: The buzzword
I.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 80’s 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 stories
of 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 looked
devastating 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

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

7
factors that influenced this change in behavior so that our understanding of it
can help facilitating change in other’s 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 seen
as 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-à-vis

8
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 at
the 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 visitor’s 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”

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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.

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 Chapter 1

Historical perspectives on Evolution of Human behavior

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)

1. Evolution and Human Behavior:

Before we actually start discussing on human behavior and factors that influence it
vis-à-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 to
Charles 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 Darwin’s 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 person’s 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 man
jump. 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

11
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 philosophy4 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-individual’s 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 majority”5.

3
Education Psychology
4
What 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.
5 Class notions and social conditioning @ www. Worldsocialism.org

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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. This
discussion 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

13
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 religion is 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 is
interesting 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 dominant
characters. People’s movements against such in justice are also a best example for

8
As 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.

14
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 that

exhibits 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 new
experiences 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 that
the 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 behavior
that abides by it is respected. This theoretical background is essential for us to
understand 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. As
time progressed these frame works have either completely disappeared or
have been reframed to suit to the existing conditions. E.g. Culture-Practice

15
 related to Widow marriage, Religion-Moses’ teachings being redefined by
Jesus.

Such change in history is witnessed when ever a stronger character or
philosophy or when social movements by people who have been stigmatized
and discriminated arise against such beliefs and practices. E.g. struggle for
Independence.

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 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.
Mamata’s 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 completely
different person…very 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 fields…at distance a trainer’s 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.

Mamata’s 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 leaving
her 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 die…and 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

17
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 me…they 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 here…I was even thinking of committing
suicide. But my group members encouraged me to live for my daughter. I knew
committing suicide takes little effort. But I don’t 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 fault…he 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’.

18
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 satisfaction…I 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 for
our 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’.

Ramana’s 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 of
PLHIVs 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.
Ramana’s 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 cause
problem 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 9th class now. When we

19
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 strong…I 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’.

20
Feelings of Guilt and Shame

21
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 stigma
discrimination 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 one’s 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 power
him/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 in
men 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,

10 www.findingmia.com
11
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

22
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 to
explore 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.

23
Stigma and Discrimination

Photograph here

24
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 individual’s social surroundings and
hold 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 (D’Cruz -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. Ramana’s 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.
Rubaina’s story also 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’.

25
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 me
as 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 altogether
and 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
Nagalaxmi’s stories. Our focus in this section is to see lived experiences of
PLHIVs, which we believe are beyond the definition of stigma and
discrimination.

26
Beyond Stigma & Discrimination: Twin Pandemics

Photograph here

27
2.3 Violence and Exploitation

Neelamma’s story:

A first look at Neelamma gives anyone who interacts with her a feeling that she
is 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 his
mother. 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 alive…that 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 better…thinking
that there are many people like me’.

28
‘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 father…if I make a mistake….he has every right to
question me and punish me….but what do I do…if a sixty year man tries to do
like that. I told my relatives about it and they seriously warned him. But he still
comes here’…

‘Usually I stay very happy and eat well…now I am unable to eat and I have
already lost some weight…tell me what should I do with him’ (questioned
Neelamma with tears rolling down her face)

Nagalaxmi’s 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

29
being very vocal in the meeting, sharing her experiences with the group…with 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. Nagalaxmi’s 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 property…all 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 in
the 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, “don’t you have any desires?
Don’t you wish to get married again? Don’t 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 healthy…why don’t you get
married’? I never entertained such thoughts. I was given in marriage at the age of

30
14 and for some reason I refused to leave my parent’s house. Later I married this
man. Aren’t 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 don’t want to take another chance. If
this house legally becomes mine at least somebody or the other will look after me
when I am bedridden…they 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 not
spoken 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

31
are yet another form of violence and exploitation which has its roots in their
vulnerable status. In Neelamma’s 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.

32
 CHAPTER 3
PLHIVs 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.
Sujatha’s story:
Sujatha is an active member of the organization that works for PLHIVs. She has
been 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 to
explain 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 that
her 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.

33
‘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 issues…and 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.

Venkatalaxmi’s story:
Venkata Laxmi is an epitome of patience and has boundless determination to be
independent. She was forced to take up responsibility of sustaining three
children 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 meet…he hesitatingly accepted but soon said no’.

‘My mother-in-law and her family were against me from the beginning as he
married 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’.

34
‘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..I
used 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 Sujatha’s story a stigmatized woman took extreme step of
‘making other’s suffer like her’ while Venkata laxmi’s 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.

35
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 women’s 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 women’s
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 because
society 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: 459–478.
13 As quoted in “HIV-Positive Women Report More Lifetime Partner Violence: Findings From a

Voluntary Counseling and Testing Clinic in Dar es Salaam, Tanzania”

14Change, Choice and Power: Young women, Livelihoods and HIV prevention,
IPPF/UNFPA/Young Positives

36
 Chapter 4
Understanding lived experiences vis-à-vis Evolution of human
behavior

What does this Chapter explore?

How behavior of People living with HIV is

influenced by their lived experiences?

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 based
on his environment and lived experiences right from the time when they are in
their mother’s 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 their
own 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?

37
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 away……………has 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-law’s family, despite their
threats display her character that formed out of this philosophy. This
understanding 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.

38
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 a
new 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, Sujatha’s 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 their
husbands……………. these experiences have given birth to a idea of
collectivizing all women living with HIV in her district……she 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 why
does society, which once stigmatized and discriminated takes a completely
different stance.

39
 Chapter 5

Understanding social frame works of good and bad

Regaining 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

individual’s 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.

Nelamma’s 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

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

40
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-law’s 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 Nelamma
because ‘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 clearly
show 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 a

mechanism 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 behavior
towards 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.

41
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. Nagalaxmi’s 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, individuals
withdraw 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 of
individuals and at the same time their personal competencies.

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

42
Table 1. Social Role Valorization Action Implications

Primarily to Enhance Personal

Primarily To Enhance Social Images
Competencies
Arranging Physical & Social Conditions Arranging Physical & Social
for a Specific Individual that are Likely to Conditions for a specific
Level Individual Person Enhance Positive Perceptions of That Individual that are Likely to
Individual by Others Enhance the Competencies of
That Individual
Arranging Physical & Social Systems that Arranging Physical & Social
are Likely to Enhance Positive Perceptions Conditions of A Person's Primary
Primary Social
Of of a Person In & Via this System Social System that are Likely to
Systems
Enhance that Person's
Competencies
Arranging Physical & Social Conditions in Arranging Physical & Social
Intermediate & Secondary Social Systems that are Likely Conditions in Secondary Social
Action Secondary Social to Enhance Positive Perceptions-In & Via Systems that are Likely To
Systems Those Systems-of People in Them, & Enhance the Competencies of
Others Like Them People in Them
Arranging Physical & Social Conditions Arranging Physical & Social
Entire Society of an
Throughout Society that Are Likely to Conditions Throughout Society
Individual, Group
Enhance Positive Perceptions of Classes that Are Likely to Enhance the
or Class of People
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 evidently
shown to their communities that their individual competencies have significantly
improved. While their group and community around, as a primary social system
ensures that its member’s 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 far
played 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.

17
Probably 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.

43
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 general
community. 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, Sujatha’s 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………

44
 Chapter 6
Advocacy vis-à-vis Power and Empowerment
Let us now understand Sujatha’s anguish in a broader context. Questions that we
seek to answer here are –how can the state be held responsible for our well
being? 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 people’s 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 else’s
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 essentially
using 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 Books
19
Sarkar Raj subtitle

45
Advocacy and lobbying is one such tool, which is often used by people’s
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.

Power with has to do with finding common ground among different interests and
building collective strength. Based on mutual support, solidarity, and collaboration,
power with can help build bridges across different interests to transform or reduce
social conflict and promote equitable relations.
Power to refers to the unique potential of every person to shape his or her life and
world. When based on mutual support, it opens up the possibilities of joint action,
or power with.
Power within has to do with a person’s sense of self worth and self-knowledge. It
includes an ability to recognize individual differences while respecting others.
Power within is the capacity to imagine and have hope; it affirms the common
human search for dignity and fulfillment.

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 of
stigma&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
a purpose to live. It also helps them adopt a socially acceptable behavior.

46
Ambedkar once said ‘tell them they are slaves and they will fight till end to end
slavery’. We also observe here that they required no Gandhi or Ambedkar to tell
them that they are discriminated. As Sujatha described on how they formed into
a district level network, it is indeed their Power within that has been the
motivating factor for forming into a network or to recognize the power to i.e. the
strength of collectivization and the strength of collective action.

While power within has brought a psychological and attitudinal change, power
to has witnessed improvement in health and economic aspects of life. It has not only
provided them opportunities to identify their unique strengths or potential to
shape their own life but has also supported with necessary inputs. While
Mulamma has been able to rebuild her life with the livelihood support being
offered by her network, Rubaina has been able to serve people like her with an
opportunity given by her organization (looking at her active participation). In
Mamta’s story we find collective action by network members to prepare
nutrition powder through which they are able to earn a decent amount of money.

As a result of this change in their lives they are now respected in their community or
the community has stopped stigmatizing them. Indeed, this progress has opened
possibilities of joint action and opened the doors to Power with.

Another important change is, a group of people who exhibited change at their
individual level, determined to bring about collective change, come together as a
network. This collective, question the ‘power’ as to why they are discriminated?
I.e. the discriminated collectively raise their voice against the system. In the
history of people’s movements, the trend has been that if the power fails to listen
to the collective voice and to the pressure for ensuring well being and equal
treatment, in a democratic context, it strives to take part in the decision making
of the power itself through power with, and the third option is to emerge as the
new power.

6.2 Role of PLHIV association in the process of change:

A glance at the above seven stories indicate role of a strong stimulus that has
transformed lives of PLHIVs. At every turning point in their lived experience,
role of a group of PLHIVs or association can be witnessed clearly. Following
table depicts positive influence of this association.

47
Table2: Role of PLHIV association:
Lived Experiences of People Living with HIV &
How they make a meaning of it
# Nature of lived How they make a meaning of it
experiences

When individual’s character gets
over powered by feelings of guilt
Feelings of Guilty and
1 and shame they get depressed
Shame

If these feelings are mild, they lead
to a decision to change behavior

Individual’s either come to a
compromise with society
Stigma &
Or Go against it-beware you will be
Discrimination and punished
2 negative behavior
Violence and
Or Challenge the system if it
Exploitation violates their rights-you will be
obviously be respected or feared

Develop behavior that is in tune
with social frame works and get
respected
3 Social respect
Develop a behavior that is against
social frame works and get
punished or re stigmatized
48
How does PLHIV association
contribute

Soothing and group support helps
in over coming feelings of guilt
and shame

This strength brings them out of
suicidal tendencies

This group also directs them to
take a positive decision to change
their behavior

Group helps individuals to
develop a positive philosophy
towards life and a positive
behavior

It also influences change in

It supports and strengthens any
efforts that individuals make to
fight for their rights and it
serves as a platform for
collective action as well

Helps individuals in improving
their capacities or competencies
and facilitates improvement in
health, social and economic
status

Interacts with general
community in building a
positive image for its members

Supports individuals, who have
developed behavior that is
against social frame works, to
change it.
 Frame work 1: Framework of Regaining Lost Pride or Asha framework
Based on the seven lived experiences and the above description of how they made a meaning of it, this
framework of Regaining Lost hope has been prepared. This depicts the process of change that takes place
in a person living with HIV and how they perceive their collective change.

Well being
Of all PLHIVs

Strive
for a share
in
Decision making
of political power
or act as great influence
on that power

Play active social roles

Achieve progress in health and economic aspects

Or Up keep them &
Play expected role or a better role in the family
(Individually a happy and peaceful life)

Stigma&discrimination: It is their ignorance. Accept challenges

Violence & exploitation: Fight back if your rights are denied
Develop a positive philosophy for life and a purpose

Comes to know that he/she is positive

Feelings of guilt&shame are natural
Do not allow them to over power you and let
Mild feelings lead to change in behavior

49
 Chapter 7: Message for All of us

This chapter examines roles of primary and secondary social systems in the life
of people living with HIV. While doing so we will address two important
questions. 1. What influences behavior of general community with specific
reference to their behavior of stigma and discrimination 2. What are the factors
that influence secondary social systems in planning strategies that would address
issues of PLHIV? Though this discussion is outside the scope of this study, in
another aspect it is very much part of this study because lived experiences of
PLHIVs and behavior of general community overlap in all the stories and are
literally inseparable.

The idea of evolution of human behavior has made it very clear that our behavior
is result of strong influence of our environment, which is a combination of
physical, psychological and social world. And we do agree that behaviors such
as stigma and discrimination are a product of ignorance of that individual on
that particular issue. It is important to note here a key change that has happened
with regard to how world view HIV. Particularly in India, it was once widely
publicized that HIV is a dreadful disease. It is these impressions that we still
carry in our mind, which is causing us to stigmatize and discriminate PLHIVs. It
is for every one to understand and decide whether further information that we
fed our mind with on HIV has changed our previously held beliefs and behavior.

Demystifying Sympathy and Empowerment:

As individuals our feelings towards PLHIVs can be broadly considered of two

types (minus the stigma and discrimination) 1. Sympathy for all that they are
going through 2. Feelings of empathy and willingness to facilitate a change. Let
us now understand how they wish to be looked upon in the words of Mamata.

‘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 for
our children and family but we lack resources’.

Mamata has every reason to feel bad when we sympathize with her, because it is
a behavior, which is more dangerous than stigma & discrimination. Stigma and
discrimination instigate a person to think differently, they inspire us to prove

50
others wrong. It is because of her earlier experiences of discrimination that
Venkatalaxmi developed a strong determination to continue her life
independently. Where as feelings of sympathy undermine our inherent worth &
capacities and make us dependent. Newton’s third law of motion best explains
this situation. “For every action there is an equal and opposite reaction”. In
normal conditions stronger the lived experiences the better we chose in our life.
Such experiences develop a better philosophy in us and a stronger character.

Nevertheless, it should be kept in mind that allowing positive discrimination

such as reservations or special provisions are always welcome up to a point
where they develop their capacitates or competencies to compete with general
community. From that perspective Venkatalaxmi’s opinion that all that a person
living with HIV needs to come back to normalcy is a soothing hand and medical
help at the right time stands correct and more meaningful. Above all, there is a
need to recognize inherent worth of individuals and ensure a physical and social
condition where in PLHIVs have access to resources and remember the words
mamatha said

‘If we have resources which can help us start our life afresh we can prove to the
world that we are second to none’.

51
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