TABLE OF CONTENTS
Acronyms 2
Acknowledgments 3
Foreword 5
Introduction 6
Case Studies
Raju Das 8
Javed 10
Joyti 12
Shambu 14
Dinesh 16
Dharam Singh 18
Ravi 20
Santosh 22
Hari 24
Shyam 26
Geeta 28
Maya 30
Surya 32
Neeraj 34
Ajay 36
Ram 38
Ali 40
Mukesh 42
Abdul 44
Vinod 46
Mukhtar 48
Girish 50
Vijay Pal 52
Neetu 54
Iliyas 56
Observations 58
Recommendations 60
ACRONYMS ACKNOWLEDGMENTS
Written by Ton Snellaert with input from Dr. Ashish Rohatgi and Kaye Kirsch.
TB Tuberculosis
SEWA ASHRAM
HIV Human Immunodeficiency Virus Singhu Border Road Krishna Nagar Narela, Delhi 110040 India
Telephone : +91 9810 620 452
Email : office@sewa-ashram.org
AIDS Acquired Immuno Deficiency Syndrome
Website : www.sewa-ashram.org
DOTS Directly Observed Treatment Short-Course This work was done with the financial support of UNAIDS. The views expressed in the report are those of the
author and are not intended as the official views of UNAIDS.
ARV Anti-retro Viral
Prior to the interviews, Dr. Ashish Rohatgi, the consulting physician of Sewa Ashram, explained the purpose
of this document and obtained verbal consent from the people written about. We thank our patients for
PLHIV People living with HIV
sharing their stories and photographs for this publication.
ATT Anti-tuberculosis therapy The author would like to acknowledge the following people who assisted with the drafting of this
publication: Erin Collins, Daniel Allen, and Nino Figuerola.
ART Anti-retro Viral Therapy
STD Sexually Transmitted Disease
CD 4 Cluster Dependent 4
MDR Multi-drug Resistant
NGO Non-governmental organisation
OPD Out-patient Department
IDUs Injecting Drug Users
2 3
FOREWORD
This report is not like other papers.
It addresses the situation of young people living in absolute destitution in Delhi. These are people who live
on the streets, eat when food is available -not often- and work with their muscles as long as they are strong
enough, breathe polluted air and smoke, and are exposed to all sorts of risk factors.These are people nobody
cares for, people without education, people without family, people rejected by the health system and any
form of social support.
These are people with a history of migration, but not migrants in the way the term is usually understood.
These are migrants who have left their poor rural surroundings to seek a better life in the big city, generally
without the hope of ever going back. They are exploited, confined to hazardous, hard and low-qualified jobs.
Economic hardships, lack of family guidance and loneliness contribute to increased risks: accidents, drug use,
infections, unprotected high-risk sexual behaviours and so on. As a result, many suffer from tuberculosis
(TB), often undiagnosed, relapsed or sometimes multi-drug resistant, and many are positive for HIV.
These are young people, on the whole living in desperate situations, without even the some-what
supportive environment of a slum. Can the drug-using community that lives under the Yamuna flyover pass
for supportive? One cannot help but be struck by the very low level of awareness they display: information
and sensitization programmes have passed by without touching them. Nearly none had ever heard of HIV
and AIDS before they were diagnosed with the condition. The overall gaps of the education and health
systems and practices are brought to the forefront by this study.
This is report is written by Ton Snellaert, in his own words, passions and convictions. It has not been edited by
UNAIDS, which does not endorse all the positions taken by the author. Ton is one of those exceptional
individuals who devote their life to others for the sheer love of humanity. He has provided all the individuals
described in the report with care, affection, information and esteem; he has given them a home in Sewa
Ashram and most owe him their life. Ton is not a mad original: he has surrounded himself with the best
managers, doctors and physiotherapists. But he has also given each of the people described in this report
completely selfless affection and permanent support so that they would finally have a chance in life.
All characters in this report have accepted to have their photo displayed, in full awareness of the topic and
purpose of the report, as a token of their appreciation for the support provided by Ton Snellaert and his
exceptionally dedicated staff.
I hope this report will help catalyze the development of strategies that will better address tuberculosis and
AIDS control among the destitute population that most programmes ignore, but whose contribution to the
epidemiology of infectious diseases cannot be neglected.
Dr. Denis Broun
UNAIDS Country Coordinator
India
4 5
INTRODUCTION
URBAN DESTITUTE : CASE STUDIES OF HIV & TB AMONG THE HOMELESS IN DELHI
On a trip to India in 1996, I was shocked at the sight of a young All patients admitted to Sewa Ashram are encouraged to be tested for TB and HIV and additional counseling
man lying naked in a gutter, his emaciated body covered with is done at Sewa Ashram. Free medical care is provided at our clinic, which is staffed by nurses, several social
bruises.Those passing by ignored him or looked the other way. workers, and overseen by a doctor. For specialized care and critical patients, Sewa Ashram utilizes the
I was trapped in a car as a passenger. Through the open services of local physicians and hospitals in Delhi. Approximately half of our patients suffer from
window I saw hundreds of men sleeping for the night by the tuberculosis and roughly ten percent are HIV positive. The average patient stays with us for six months.
roadside, on a rag or a newspaper, or straight on the pavement, However, long-term care is offered to all patients because our goal is not just physical healing, but personal
as if knocked out. That night, in a dingy hotel in Old Delhi I transformation.
pondered the utter squalor and destitution I had seen, then
opened my battered Bible and read the words of Isaiah 58:6- In this report, profiles of twenty-five Sewa Ashram patients are presented. It documents their journey from
12. home, their experience of living on the streets, including indulgence in high risk behaviour leading to HIV
infection and their subsequent medical needs. By sharing these profiles, we invite the reader to witness the
“Share your food with the hungry and bring the homeless poor into your home. When you see the naked, bottom of a long spiral of exploitation, and to experience, while reading, what others have to bear their
cover them… and your healing will quickly appear; and those from among you shall to raise up the entire lives. We hope to inspire readers to seek more effective ways to care for the poorest of the poor and to
foundations of many generations.” simply respond with compassion when confronted with an individual face of poverty.
I took these words literally. These scriptures became the roadmap, the blueprint for what is now Sewa We are living in a world rife with exploitation: environmentally, economically and socially. The proof of this is
Ashram. In December 1997, I opened Delhi House, a small rehabilitation center with room for twelve patients increasingly seen all over the world; especially amongst the poorest of the poor, where the chain of
in Narela1. I would roam around under bridges and flyovers and take in those destitute who were in exploitation manifests in its most cruel forms. If we really want to find solutions to these problems, we can't
immediate need of medical treatment. In the first year 45 people were cared for. Since then, more than 3,000 help but have a closer look at them on all levels, especially on a personal, human level.
in desperate need have passed through Sewa Ashram.
Let us understand that our culture of exploitation is the main cause of such calamities, and that a non-
Today, the two-acre site of Sewa Ashram is a rehabilitation centre that provides free medical care and long- exploitive society may be the only solution. Billions of low-wage workers are the modern slaves. May we all
term rehabilitation for sick and destitute people in Delhi,India. It has a vibrant community of 150 - 180 together be touched by the truth of their life stories and plant new seeds of justice and compassion within
patients and staff, with a clinic, tuberculosis wards, a children's education program and a vocational program. our own hearts…
Plans are currently being made to expand the facility to accommodate more patients.
These are their stories, pain and loneliness crafted into words.
After serving the poor for a decade Sewa Ashram has developed a deep understanding of the needs of the
destitute and effective ways to meet those needs. Today, our approach to care is first and foremost a
community-based model. It is in the community that the ill person finds rest and acceptance, often for the Ton Snellaert
first time in their life, while physical and spiritual healing occurs concurrently. Founder, Sewa Ashram
Our community is based on compassion and focused on restoring dignity while giving love and good
healthcare to the poorest of the poor. All patients admitted to Sewa Ashram contribute to the daily life of the
community by helping to care for each other. Many of our staff and workers are former patients who have
chosen to remain at Sewa Ashram and serve the destitute.
1 Northern suburb of Delhi where Sewa Ashram is located
6 7
RAJU DAS
Raju hails from West Bengal. His parents died while he was still a l Move back to Delhi to find better work opportunity, worked as a rickshaw puller
baby. Brought up by his cousin, he worked in the fields as a bonded l Exposed to harmful toxins during work which compromised pulmonary health and increased
labourer. He dreamt of going to school, but poverty and his abusive susceptibility to TB
cousin did not allow him. For 24 long and painful years he remained
l Visited red light areas at G.B.Road
in his village in West Bengal, slaved away for someone else, was fed
meagre meals, and never knew love. Then someone brought him to
Mumbai, saying the clouds there were lined with silver, the pastures Delhi Experience
green. However, for Raju, the air in Mumbai was poison. Coughing, l Easy, cheap access to sex workers
.
he ended up washing dishes at some road-side “hotel” He earned l Lack of awareness regarding HIV or safe sex
enough rupees to escape his hard life for a few hours by going to a l Access to healthcare inhibited by unfamiliarity with city, cost and ignorance of illness
Bollywood movie, chewing tobacco to ease the hunger inside.
After five years of hunger and loneliness, Mumbai's many railway stations beckoned him to find luck Ashram Intervention
elsewhere. He jumped the train heading for Delhi, Capital City of India.When the train arrived and the people l Finds acceptance and love at Sewa Ashram
disembarked, his diminutive body was dragged along with the crowd until outside the station. After his eyes l Provided with education, counselling and support
got used to the light he saw others like him, dark, small, skinny and poor. They became his friends, his
l Provided ARV Drugs and TB treatment
colleagues. He joined the thousands of rickshaw 2 drivers who risk their lives amidst the insane Delhi traffic,
l Able to learn from others with similar backgrounds
pulling the weight of a larger specimen of humankind with exertion of muscles and lungs, breathing in
carcinogenic fumes. Then there were the men who asked to be driven to GB Road, Delhi's notorious Red l Medical care, good nutrition, safety
Light district. He would watch how these men, drunken and boisterous, climbed the stairs to those women l Physical condition satisfactory after seven months of rehabilitation.
who waved at him from the balcony above, flashing eyes, flowers in their hair, lips carmine red. He waited l Re-admitted to the Ashram after two months due to difficulty in breathing, loss of weight and
until it was dark, then he himself climbed the stairs. Many times after, he climbed those same stairs, unaware skin-infections
of the danger that lurked above. He had never even heard of HIV, AIDS, STD, TB, and certainly not how and
why to use condoms.
Medical Summary
Gradually he became more impoverished, a pain in his lungs he could not define, his breath short, grasping l Age: 30
fear overtook him. His last strength left him and his home became the pavement in front of Novelty Cinema. l HIV Transmission Route: Unprotected sex with sex workers.
No more Bollywood for him. Reduced to holding up his hands for some coins he wasted away while no one l Diagnosis: Pulmonary TB with HIV, emaciation (30 kg), dermal mycosis.
cared. On Tuesdays and Saturdays, he would drag himself to the Hanuman temple in Yamuna Bazaar, Old
l Prognosis: Mixed. CD4 counts below critical level of 150, ART started November 2006.
Delhi, to join the queue of beggars and other poor people who lined up for the free food handed out to them.
Psychological instability requires continuous support.
It is here that I found him, emaciated and seriously ill. Diagnosis:TB and HIV infection.
After seven months of rehabilitation, Raju chose to return to West Bengal. His physical condition was
satisfactory, the healing of his TB infection successful. Although he started on a life-long course of ARV drugs,
he returned two months later suffering from breathlessness, loss of weight and skin-infections mainly
behind his ears, HIV related. Raju did not know yet how to care for his health. Our challenge lay in guiding
patients to live a positive life. The harshness of the system, the exploitation by his superiors, the merciless
abuse and the rejection of being a small, black, poor man; one you would not even touch - has left a deep
imprint upon Raju's heart. He feels he is not worthy of God's grace, he thinks it is his karma to have a dog's life,
guilt stands in the way of total healing. It will take at least two more years for Raju to find healing of heart and
freedom within. Our community offers him the healing environment, a family to belong to.
Background / Root Causes
l Premature death of parents resulted in total lack of parental care
l Child abuse and child labour
l No education
l Earlier worked in Mumbai road side hotel
2 Drivers of the three-wheeled bicycles used for carrying passengers and goods in Delhi
8 9
JAVED
Javed was born in a predominantly Muslim village in Background / Root Causes
West Bengal thirty-three years ago. His family-home l Born in poverty
was a hovel made of mud and grass. His father left his l No parental support, brought up by grandmother
family and married another woman when Javed was
l Undernourished while growing up
only three months old. His mother remarried as well
and left Javed in the care of his grandmother.Together l Illiterate
they lived in the same cluster of huts. Javed, a small l Had a habit of stealing
boy with a very dark complexion, seldom wearing l Escaped rural poverty by migrating to Mumbai
pants and always hungry, depended on his l Hunger led to criminal conduct which resulted in imprisonment
grandmother to feed and clothe him. Small as he was,
he ventured out in the fields beyond the village.
Driven by hunger, he would steal at any given Delhi Experience
opportunity until it became a habit. Complaints l Expose to heroin and professional sex workers
reached the ears of his grandmother who would scold l Needle exchange program supported his drug addiction. No safe injection education
and beat little Javed. l HIV transmission prevention / safe sex messages did not reach him
l Developed a severe abscess
When he was eight years old he 'escaped' poverty like so many thousands of young boys before him. On the
platform of the railway station, he spread out an old newspaper on which he lay down, hungry and tired. In
the morning he was woken by the clamor of the trains. Through the open doors of the coaches cleaners Ashram Intervention
swept waste on to the platform.“Breakfast,” Javed thought and he would jump into the waste searching for l TB treatment and rehabilitation
something to eat. There was a profusion of leftovers. He ate so much, it made him sick. Until the age of l Abscess care provided
thirteen, he would jump the trains, sweeping the floors with a grass broom, holding up his hand for a coin
l HIV testing and counselling about living with HIV
and taking the leftovers from under the benches. Then he fell in with the wrong people, boys older than him
who took him to Mumbai. In this metropolis he made his money with petty crimes, ended up in jail several l Long-term community environment: Javed has been living in the Ashram for 7 years
times and was introduced to heroin and professional sex workers. When the mafia approached him offering l Encouraged to discover hidden talent of painting, leading to economic independence
a career, he escaped to Delhi, the city with no heart.
Medical Summary
A misguided boy who has never had an education and has known only poverty, hunger and crime won't
l Age: 33
survive in this city for long without getting into trouble. Soon others instructed him in the ways of injecting
drugs with a syringe. Some of the IDUs introduced him to various organisations which provided free syringes l HIV Transmission Route: Injecting drug use with shared needles / Unprotected sex with sex
and substitute drugs under the needle exchange program and substitution therapy. However, he was not workers
taught how to inject and why one should not share syringes. HIV, AIDS and TB are just strange-sounding l Diagnosis:TB, HIV
terms for one who is illiterate. For five years, Javed lived in the shadow of a flyover. He supported his drug l Prognosis: Stable, while his CD4 count remains above critical level of 200 per cc.
habit by indulging in theft and other petty crimes. Huddled under a blanket with others he poked needles in
his groin, in search of the artery in an already infected wound. It was then that I found him, an open abscess
above his right leg, TB and HIV infected and seriously ill. He was brought to the emergency room of a private
Christian hospital where he was in a coma for eight days.
After Javed was discharged from the hospital he came to Sewa Ashram for rehabilitation. Several times he
ran away, lured back to the underworld of drug use. Each time he was found in a critical condition and
brought back to Sewa Ashram. During the seven years, he has lived in our community he has learned to
understand what HIV really means. For an illiterate person it takes often a couple of years, and continual
reinforcement before they truly understand the implications of being HIV positive and how to live with the
disease.
Javed is now a talented painter. He recently married Jyoti, who is also HIV infected, and leads a happy family
life.They have adopted his wife's fourteen year old niece. Javed is able to provide for his little family by selling
his art. He has had exhibitions of his paintings in Europe and India. He finally“made it.”
10 11
JYOTI
Jyoti, dark beauty, 25 years of age. Hers was not an easy Background / Root Causes
childhood; born in poor conditions, her home was one of l Born in rural poverty
the many mud huts dotting the barren landscape of l Mentally ill mother
Andhra Pradesh. Her mother was severely mentally ill, she
l Absent Father caught in a cycle of debt and labour
roamed around, wailing like a mad woman, her hair
dreaded, dust and thistles in it. Jyoti perceived her as a l As a young, vulnerable girl, she was taken advantage of by boys
stranger, not her mother at all, no affection was to be found l Education about HIV/AIDS or safe sex did not reach her
in her arms. Her screams frightened Jyoti. Her father was
mostly absent, trying to provide for his family, bonded to Delhi Experience
his labour, a continuous cycle of paying debts with sweat
l Infected with HIV by an unfaithful partner
and blood. When Jyoti became a teenager, she became
easy prey to the boys around her, her father had died then l Medication prescribed without examination or counseling
and her mother was unable to protect and guide her. l Illness exploited by doctors
l Discrimination based on HIV status
When she was sixteen years old, one young man in particular impressed her with his worldliness; he could
l TB and HIV status kept hidden
read and write, count numbers and would wear a clean shirt all the time. He proposed that they should go
and live in Delhi where he had secured a job with the railway as a technician. Leaving her mad mother behind,
they travelled by train to Delhi and made their residence in a small house at a railway colony. Her boyfriend, Ashram Intervention
husband in the eyes of others, was out on duty rather often. She would not see him for days on end. He would l TB diagnosed and treatment started, completed in May 2007
suddenly appear, drunk and violent, abusing her, and then run off again. In the night she lay awake, a burning l Consistent health care provided in a peaceful environment along with love and acceptance in
fever consumed her body, and a persistent coughing made her spit out blood. the community
l Able to find purpose in caring for others
Jyoti dragged herself to a doctor who wrote out some medicines, no examinations were done, no
counselling given. As her condition worsened, she became useless to her man who abandoned her in l Finds a life partner in the Ashram
another bout of anger. Rejected by family and friends, she was about to be rejected by society at large. l Involved in jewellery making
Different doctors exploited her weakness; she sold her rings, then her necklace, her earrings, even the tiny
nose ring to buy medicines, but to no avail. Nobody really cared; her tuberculosis infection and HIV status
Medical Summary
was kept hidden from her, her sickness filled the pockets of the false healers. It was only in a government
l Age: 25
hospital that she was rightly diagnosed and referred to an AIDS Care Centre run by a Delhi-based NGO.
l HIV Transmission Route: Sexual transmission
How biased our society is; never mind the man who was with multiple partners and infected her with HIV, we l Diagnosis: HIV with very low CD4 count and pulmonary TB
point the finger at the woman. Her HIV status also gave her the status of a prostitute, or sex-worker, as we say l Prognosis: Stable, compliant with ART and CD4 remains stable though prone to opportunistic
so decently. This is the way she was received in this AIDS Care home, this is the way her history was penned infections of the respiratory system and GI tract.
down in the register and as such she was introduced to us. After only 3 weeks in this AIDS Care Centre, Jyoti
was referred to Sewa Ashram since she was a destitute, rather dark and …well, a prostitute. Her condition
was serious, a CD4 count of only 17, her lungs congested, her body tired. A course of anti-tuberculosis
therapy was started in combination with ARV drugs. She slept a lot during the initial months; the usual
symptoms of HIV plagued her: ulcers in her mouth, diarrhoea, weight loss. However, it was the acceptance
she experienced in Sewa Ashram's community that brought her deep healing.
Jyoti came out of her shell, overcoming rejection by accepting the task of caring for the Ashram's children,
many of them orphaned and disabled. She felt the “mother” inside her heart rise, ready to love. Javed, our
raven black painter courted her beauty. His paintings spoke like- wise, a celebration of female forms, spiritual,
involving the heart. They married in early 2007 in the midst of our community. The young couple adopted a
girl; an abandoned niece of Jyoti. Today, they live in a rented apartment nearby and recently invited me for
dinner.The smell that lingers in the kitchen is delicious, many paintings on the wall, colourful curtains, simple
furniture. On an easel rests a big canvas, a painting by them both, still in progress; the story of their lives.
12 13
SHAMBU
Shambu is his name; a good looking young man 26 years of age. His face causes many problems; the bones of his pelvis are infected. He is being treated for TB. He realizes that in the
aquiline, mysterious, his voice soft, silent most of the time. I have always condition he is in, there is at present no other way for him than to live in community at Sewa Ashram. He
wondered how this well brought up kid ended up like he did. Although serves in some domestic chores and designs and creates his own jewellery everyday. He still is silent, good
his family was traditionally farmers, his father served as a soldier at looking and soft spoken. He folds his hands and gives me a greeting of love.
Nepal's high altitude borders. His was a normal childhood in village-life
Nepal: going to school, playing with his elder brother, out for a walk with Background / Root Causes
his sister. It was a good life, according to Shambu. However, as a teenager l Burden of family responsibility at an early age due to ailing mother, deceased father
he became acquainted with sickness when his mother was infected by l No support from sibling
tuberculosis in the brain. His father, who was rather old, had died a few
l Low level of education
years before and his elder brother and sister had left the family-home,
l Child labour
both being married and having kids on their own. As not much help
came from their side, Shambu decided to travel to Delhi where his sister
Delhi Experience
was living. Maybe he would find a job, maybe he could support his
l Migrated to Delhi in search of a job
mother who battled for her health alone.This was eight years ago.
l Driven to petty crime
Delhi is a dangerous place for a young man, a migrant seeking to make some money. A job as a dishwasher l No education about HIV/ risks associated with syringe use and unprotected sex
by a “tent-house” was disconcerting, cleaning the plates while eating the leftovers from the well-to-do. He l Government awareness campaigns and health initiatives did not reach him
,
moved to Yamuna Bazaar, rented a rickshaw and fell in with the “wrong lot”something almost unavoidable in
l Quality healthcare provided until HIV status known
this particular area. Delhi's migrant rickshaw drivers have their own anarchistic sub-culture; you carry a load
when in need of money, when thirsty for alcohol, when desiring a woman, or drugs to ease your sleep. The l Faced discrimination based on HIV status
hot hours of the day you wile away under the shade of a tree, the seat placed crosswise on the handle-bars for l Half-hearted approach by NGOs involved in the needle exchange program, no counseling given
a bed.You did not need more. Freedom! Then Shambu began his down-fall; he was introduced to the syringe. against drug abuse, no safe injection education
Delhi's addict population is hooked on a cocktail of various drugs, painkillers and tranquilizers to be l Developed a chronic Abscess and TB
obtained without prescription at pharmacies, which are then injected in the groin or arms. During this
period none of the awareness programs undertaken by the Government or NGO's reached him. Instead, Ashram Intervention
syringes and substitute drugs were freely given out by a number of NGOs under the needle exchange l Hospitalization for critical condition with long-term rehabilitation
program and the substitution therapy without bothering to counsel him or his peers about the dangers of l Finds acceptance and love
injecting drug use.
l Provided with education and counseling
After some years of injecting drug use, rickshaw pulling and additional stealing, an enormous abscess l Left the Ashram to return to native home but returned after a year on being diagnose TB for the
appeared in his left groin. It was then that we found Shambu and admitted him in a semi-private hospital of second time
good reputation. For many months Shambu was in isolation, the flow of pus hard to contain. They had never l Able to learn from others from similar backgrounds
encountered such a difficult case before. When HIV was diagnosed, a sign was hung on his door; it was the l Given an opportunity for creative outlet in jewellery making
.
black icon of “Biohazard” Doctors and nurses would enter his little room less regularly. I still see it before me;
the emaciated boy, left alone, lying in his own waste and pus, with a warning sign on his door. Medical Summary
l Age: 26
After a lengthy treatment he was discharged and brought back to the Ashram, disabled, his left leg rendered
l HIV Transmission Route: Injecting drug use / Unprotected sex with sex workers
useless. Shambu also had TB. At the Ashram the real healing process began. The healing of his broken heart:
the shame, the regret, the enormous feelings of guilt, the battle with the craving for drugs, for escape out of a l Diagnosis: Originally presented with Inguinal Abscess and HIV. HIV with TB of the Pelvic Bone
reality he could no longer understand. After a rehabilitation of 4 years Shambu was deemed fit to return to with draining sinus.
Nepal. He desired to see his mother again. With his sister who still lived in Delhi, he returned to his parent's l Prognosis: Reserved. Tubercular sinus has to be removed by amputation. On ART, CD4 counts
house. stable, but struggles with ART compliance. Long-term TB treatment required.
How surprised I was to see him almost a year later entering the Ashram. As emaciated as before, his right leg
swollen, his other leg dangling along. Something dark, unspoken, had made him return to the bridge, to his
former life-style. He abused his healthy right groin at an injecting site until his leg became swollen beyond
proportions. After admittance in an AIDS Care Home he was diagnosed with TB for the second time.That was
when he decided to return to the Ashram. The way he was received, the acceptance he has experienced, the
care given by his brothers while daily dressing his wounds, have all mended his broken heart. His wound still
14 15
DINESH
Dinesh parked his cycle rickshaw3 in the shadow of a tree. bamboo stick in his hand, shooed the little dirty urchins away from the shiny white sedans. In the night fever
He had no strength left, no breath. For more than five consumed his body, violent coughing kept him awake. In the morning he felt no strength to rise from his cot.
months, he had been coughing up blood. His lungs seemed The policeman chased him away like any other mangy dog; there are plenty of healthier Bihari boys to
to be filled with water. Appetite had left him long ago, no exploit.
need for food. Dinesh placed the seat of his rickshaw so that
he could sleep on it and then closed his eyes. He had nearly Pedalling his rickshaw, Dinesh felt that the end of his life was near. He sought help at the dispensary of a local
dozed off when a sudden jolt threw him from his seat. Lying Sikh temple, but dispensing is all they did: a few paracetamol tablets and some cough-syrup. Social workers
on the ground he saw that a car had hit his rickshaw, both visiting the hotspots of the homeless in a fancy mobile clinic, hand out the same; some paracetamol, some
wheels were smashed, the axle broken. A violent pain syrup.“You will be ok.” they say.“Soon you will be able to eat.” However Dinesh's appetite did not return. With
seared through his hips and legs, he was unable to crawl up his last strength he cycled to a huge government hospital, where, alas, he is given the same 'non-treatment';
and thus decided that it was better to just lie down at the some painkillers and a “Get out of here!” It was then that he returned to the shade of his tree, having never
spot, better to just die, give it all up. felt so lonely in his life. He placed the seat crosswise on the handlebars and rested. Everything seemed to
turn before his eyes, the sun was relentless, a big ball of fire, then darkness. It was then that we found him.
It was then that we found him, this emaciated boy, 18 years old. After a bath and a haircut at the Ashram we Diagnosis: broken hip (related to bone TB), Pulmonary Koch's and pleural infusion.
did some medical investigations and found out that he was suffering from TB, pleural infusion and a broken
hip. The day after, he was admitted in the Intensive Care Unit of St. Stephen's hospital where five litres of pus Background / Root Causes
were drained from his lungs. At that time further surgery was required but Dinesh was too weak to undergo l Born in poverty and undernourished
such a serious medical procedure. After one and a half months with no improvement he was discharged l Child abuse by alcoholic father and step mother
from the hospital and came back to the Ashram in order to gain weight. He only weighed 35 kg. I remember
l Illiterate
how scared he was when he arrived; he earnestly feared for his life, there was no improvement in his health
yet. But love is a powerful medicine; we pampered Dinesh like a baby, tempted him with chocolate and fruit- l Child labour
juice, fried eggs and chicken. Eight months later Dinesh had gained 20 kilos. We sat under the tree, his hands
ever nimble, creating earrings, necklaces and bracelets. He told me his sad story, with a smile nevertheless. Delhi Experience
l Ran away to the city for a job
Dinesh was born in Bihar, northern part of India.When he was two months old his mother died. His father was l Exploited at work
an alcoholic who would beat him and his brother mercilessly. When his father married again he left his two l Inaccessible and ineffective healthcare interventions 3 providers dispensed medicine without
small sons with their grandmother, who was living in a slum-hut. Dinesh was brought up in poverty, there tests or diagnosis
was never enough to eat and no opportunity for education. His elder brother left Bihar and never returned.
l Discouraged from seeking treatment, discriminated against and shouted at because he was
When Dinesh was seven years old his grandmother was killed by her own son; Dinesh's uncle hit her on the
back of her head with an enormous pestle and took possession of her hut. Hearing the news, his father took poor
Dinesh back to his home. Things didn't improve. His father was drunk most of the time, his step-mother l Late diagnosis resulted in advanced TB with complications
abused Dinesh, making him work from morning till evening, not allowing him to go to school.
Ashram Intervention
When he was ten years of age he left the violence of his home. His friends had told him about the wealth to be l Found at the neediest moment; provided with medical treatment, good nutrition, care and love
found in Delhi.“Everyone owns a house and drives a car,” they said. So Dinesh climbed on the train to Delhi. l Slowly health returns, and he takes up jewellery making
Arriving in Delhi he found a job at a tea-stall, cleaning plates and cups. Carrying out various petty jobs over a l Orthopaedic injury treated
period of two years he remained in poverty, because no one ever paid him for his labour. Little black Bihari
l Timely intervention saved one lung
boys just don't get paid, they get booted out.
Desperate to succeed he travelled to Punjab where he worked for seven months at a farm until he was Medical Summary
booted out there too, of course without payment. He tried his luck in Mumbai, decided to be his own boss l Age: 18
and took to gathering garbage, selling it to Mumbai's vast recycling industry. l HIV Status: Negative
l Diagnosis: Pulmonary TB with pyothorax, later diagnosed with TB of the hip joint, extreme
After one year of scavenging, he managed to save 4000 rupees 4 and once again travelled without a ticket to emaciation
Delhi once more.“Good to be back in the Delhi” he thought while taking in the vast feverish crowds in front of
l Prognosis: Good, as long as recurrent infections do not occur. One lung is constricted due to
Old Delhi station. Money burning in his pocket, a hollow feeling within, he dove into the cobweb that is Old
Delhi. 4000 rupees was burned up quickly and soon he felt the soaring hunger again. While standing in a fibrosis, lung function is 50%. Daily exercise can improve lung function up to 65%.
queue before Hanuman Mandir 5 to receive food handed out by middleclass devotees, a policeman
approached him and offered a job in some sort of illegal parking racket he operated. Dinesh, a parking guard,
3 Three-wheeled tricycles used to carry passengers and cargo in Delhi
4 Approximately $ 100 USD
5 A well-known Hindu temple in Delhi
16 17
DHARAM SINGH
Dharam Singh, such a cute boy, endowed with a bright mind, doctor demands an x-ray to be taken, after examination of the photo he gives 14 small white tablets to be
strong body, nothing could go amiss it seemed. His family, not taken morning and evening for one week.
poor, not rich, are embroiderers in the suburbs near
Aurangabad, Maharashtra. They also have a little side business Seven days later, I scanned the Yamuna Bazaar roadside; the sight of that skinny boy struck me, so I take
in transport that adds to the family fortune. At school he felt the Dharam Singh home to the Ashram. An x-ray revealed pulmonary Koch's (TB), rather serious, sputum
strong need to assert himself and therefore spoke in a loud positive. He had never heard about tuberculosis, a mysterious word, he turns it around in his mouth: tu-ber-
voice. He thought he was always right. One of the few things cu-lo-sis. We explain the importance of continuing the treatment; I implore him to not run away. Over four
small boys learn in school is gambling. Their faces in brazen months, I see him regaining his health, he is boisterous once more. One day, while distributing the morning
contortions as the cards are slammed on the floor, small boys medicine, Dharam Singh was absent. A boy told me that Dharam had shown him 50 rupees before jumping
eager to grow up. Above his bed hung a picture of muscular in a bus to Delhi.That same day and many times after, I went looking for him at Yamuna Bazaar, under the ISBT
Salman Khan from the hit movie “Tere Naam.” Dharam looks in Bridge, on the Yamuna riverbank, though I found no trace of Dharam Singh.
the mirror and decides he has become a man.
Four months later, I again scan the lines of beggars in front of Hanuman Mandir. At the end of the queue of
A local money lender provided him with 8000 rupees. Today he will win; today he will rake the money in. But
6 ragged people a half naked boy was squatting on the pavement, watery diarrhoea beneath him. I saw the
the money lender and some others went along to a place in the jungle for some undisturbed card play. An dark brown mark, a sort of beauty-spot on his nose. “Dharam Singh,” I gasp and lift him up. Diagnosis:
hour later Dharam Singh is robbed by the cunning elders, the money lender wants his money back to add to “Pulmonary Koch's, Defaulter, left pyopneumothorax with bronchopleural fistula on ICD, sputum positive.”
his winnings and even threatened to harass his parents. His lung had collapsed, negative suction pressure was applied, he was in the ICU for two weeks. Two months
later we both look at his most recent x-ray,“Do you see,” I say,“How slowly tissue builds up and the lung takes
Dharam Singh never went back home that day, or ever after. The train was waiting for him, the doors open on its former shape? Maybe next month we can remove the tube. Please stay, don't run away, it will kill you.”
wide,“Old Delhi” written on a sign. In front of the Old Delhi station a Sadhu 7points the way to Yamuna Bazaar, He looks at me and grins!
his right hand making one single fluttering movement, indicating 'straight on!' The grapevine has it that
money is to be earned in the catering business, Indian weddings in abundance. He made 1,500 rupees8 a Background / Root Causes
month he made, not bad for a single boy. He spent it on movies, food, a girl sometimes and of course, l Ran away to city to escape gambling debt
gambling. Heat descended, dust-storms ran amok. Dharam took the train to Mumbai, pulled in nets on a
fishing boat, cleansed utensils in ocean-front hotels. He made 150 rupees a day. Money was important to him. Delhi Experience
In search for more he travelled to Gujarat and worked in the kitchen of a huge Jain community, where the l Three attempts to access health care were ineffective. Once he escaped
food tasted sweet though he found no nourishment. In the night, cold then hot fevers would keep him awake, l Default on TB treatment
he felt sick, but no one cared. He felt alone. One more time he counted his money, it was enough to travel to
l Lung could have been saved with earlier treatment. When he defaulted on treatment, it cost him
Mumbai once more. Spilling out of Queens Gate station he took a rickshaw to the JJ Hospital, he felt so
his lung
miserable. At the hospital, nurses immediately hooked him up to IV's and took various blood-samples for
tests. When he was lying on a stretcher ready to be brought to the X-ray room, he removed the IV's and bolted Ashram Intervention
out of the door. Out of breath, a searing pain in his chest, he stumbled into Queens Gate station. The train to
l Immediate identification of TB
Delhi would arrive in about eight hours so he sat down between the crush of waiting passengers, unable to
l Defaulter of TB treatment is continually sought, welcomed back to Ashram when found
find rest.
l Continual reinforcement of the importance of completing treatment
After a torturous journey of 24 hours he arrived in Delhi where he made his way to the nearby Lok Nayak l Trust built by counselling
Government Hospital. He entered the emergency, two patients on one bed. A panel of doctors decided not
to hear him, "OPD!" someone shouts. He joins a queue of some hundred patients, but his number was not Medical Summary
called on that day.That night he slept before the entrance, at seven in the morning he finally sat down on the l Age: 17
last empty seat in front of the doctor's room.
l HIV status: negative
The doctor, hardly looking at Dharam Singh, jots down some notes:“persistent cough, loss of appetite, fever l Diagnosis: Pulmonary Koch's, Defaulter, left pyopneumothorax with bronchopleural fistula on
and congestion.” His watch tells him the date and then he signs the document and throws it on the pile ICD, sputum positive
before him and writes a prescription for cough syrup. Job done, next one. l Prognosis: Bad. Will survive with one lung unless he gets another infection. Needs to remain in
clean and friendly environment. Unable to do heavy labour. Remaining lung is compensating
The syrup tasted nice, though his cough and fever remained. At Yamuna Bazaar he goes to an NGO that for lost lung. Pulmonary rehabilitation exercises essential.
provides medical care to the local community of drug-addicts. Here the same procedure is followed; cough
syrup is given. Next one! The Gurudwara9 might bring healing, so he headed for Chandni Chowk.10 The Sikh
9 Sikh Temple
6 About $ 200 USD
10 A major market in Old Delhi
7 A Hindu ascetic holy man
8 Approximately $ 45 USD
18 19
RAVI
The year was 1975; the place was the rural belt surrounding the women. Staying alive takes up all his time; with his business of selling little mirrors, combs and pens before
smoke of Calcutta, long before Special Economic Zone's, when the towering Jama Masjid13. Six years later he ends up at Mother Teresa's House of the Dying Destitute in
farmers still had their own land. The harvest was plentiful, the Delhi. It is there that TB and HIV are diagnosed. DOTS treatment is given for seven months and after a sputum
Howrah River flowed smoothly and everything seemed all right. test comes back negative, he is discharged. Further clinical examinations and follow-up might have
People on the land were poor but didn't go hungry, unlike the prevented a relapse of secondary infections that almost killed him a second time.
starvation among the destitute in the city of Calcutta, now Kolkata.
Why then, did eight year old Ravi leave his parental home? I guess Some chai-wallah14 in Chandni Chowk gave him our address, then pointed at the bus-stop by the Red Fort.
he was just too young to comprehend his actions. He just Ravi in need of bed rest, medical treatment and good food follows the chai-walla's advice and climbs the bus
wandered off along the railway track to the nearest station, headed to Narela15. A destitute person needs more then a shelter in the night, a treatment for some months;
leaving his parents, brothers and sisters behind. The diminutive a homeless person needs a community.
boy ducked behind a pillar when the train, a red god-like monster, screeched to a halt at platform number
one. The compartment doors slammed open and people spilled out. He was almost crushed between Four months have passed. Ravi health is largely restored. It surprised me to see how quickly he gained
bustling coolies, before quickly slipping on board. As he was small enough to hide under a seat, he thought weight. I must say though, that he is very lazy! He does not move around a lot and avoids taking up any
that he did not require a ticket. Whistles blew, a loud shutting of doors, there was a clashing and shaking of chores to be done at the Ashram. This poses a challenge; how to motivate those that are not willing to be
steel, wheels moved in unison, like a beating heart, ever faster, the rhythmic beat swaying Ravi asleep. motivated, who have never learned that life is more than food and sleep, who depend on drugs for
experiences of transcendence, who do not seek but only hide. This aspect of Ravi's rehabilitation is as
On arriving in Delhi, the fearful and lonely boy was quickly measured by the cunning eyes of a tea-stall owner. important as the clinical/medical aspect, a transformation needs to be wrought within. Without this he will
Ravi was allowed to sleep under the table at night, at daytime, in scorching sun, he scrubbed plates, pumped soon be in the same position as before. It is eleven in the morning, I stand next to his bed; “Ravi, wake up,” I
the kerosene stove, served boiling hot chai and did a thousand other errands. His payment was food and a shout.
mat under the table, affection and love was nonexistent. Treated gruffly and demeaned, he more often
received a kick than a cuddle. It was again a train that brought him to the outskirts of Delhi, it reminded him Background / Root Causes
of home; green fields, the season of harvest. A small boy, bent-over back, tilled unyielding stone-like soil. l 8 year old runaway seeking adventure
Seasons change, the monsoon washed away any opportunity to work/eat. Back in the city, under Delhi's l Child labour
flyovers, the homeless wile away their time. Charas and ganja11 is passed around until another season arrives;
the season of weddings and festivals. “Party Lawns” and “Tent Houses” do brisk business, catering to the Delhi Experience
vanity and Bollywood fantasies of the well to do. Elaborate banquets are laid out; the greater the number of l 4 years in a children's ashram provided with education, care and safety, but discharged
guests, the more auspicious the status of the family. Ravi worked so hard, became too tired to even eat, no without further plan
moment's rest was given. It was then that a friendly gloved hand, a police man in uniform, brought Ravi to a l Exploitation in work
government run children's ashram in Alipur. An enormous steel gate closed shut with a loud bang. Is this jail?
l Begins to visit prostitutes without understanding about use of condoms or HIV
The government social workers, however, were kind. Education was given, the environment was safe. Ravi
l Diagnosed with TB and HIV infection
felt it was a bit like holiday.
l DOTS treatment given following standard protocol, but relapse occurred
For 4 years, Ravi was locked up, then at the age of 16 he was released, with nowhere to go. He picked up a
multitude of jobs; cleaning dishes, driving a rickshaw, like nothing ever changed. But he was a young man Ashram Intervention
now and there was a certain urge. GB Road was the address to be, everyone could point the way. Big greasy l HIV and TB treatment and rehabilitation
turbaned guys sell motor parts downstairs, then up the rickety stairs to enter a room full of girls; old, young l Medical care, good nutrition and a loving environment are provided
and very young. He chose one, the next night another, this was fun. Tent-house jobs kept the cash coming,
when the season changed he traveled south. Bombay, Bollywood. He tasted the girls of Bombay, much the Medical Summary
same as in Delhi, though these girls insisted that he used a rubber thing, a sort of glove. l Age: 38
l HIV Transmission Route: unprotected sex with sex workers
Delhi girls didn't do so. He never had seen or even heard of such a thing. The girl assured him that it was to
prevent getting babies, many families use it, she said. Back in Delhi again things were much the same, that l Diagnosis: HIV with Pulmonary TB
night's girl had no condoms. Doesn't matter, he bought her with 250 rupees12 for a full night. In the morning l Prognosis: Reserved. Physically improved but unmotivated to take further steps to maintain
he slipped another note of 50 on her pillow, she was nice. his health independently
The new millennium is upon us, it is the year 2000. It is August and the sun almost knocks Ravi out. He still
does not know he is HIV infected, he has never heard of HIV.The connection between condom usage and HIV
is beyond his understanding. He has lost much weight these last months; he has also lost his interest in
11 Marijuana and hashish 14 Tea vendor
12 Approximately $6 USD 15 Sewa Ashram is located in the north Delhi suburb of Narela
13 The Principle Mosque in Old Delhi
20 21
SANTOSH
Most stories in this book depict the life of those who had evening and attends the educative program given in our community hall. I invite him to sit with me under a
limited choices, due to extreme poverty. Santosh however, had tree, in the silent shade he tells me his story, regretting the mistakes he made he searches my eyes for an
everything he could wish for. His family was not rich but had a answer.“It is ok,”I say.
certain standing, and was respected in the village, a family of
hardworking farmers who also ran a sweet-shop. As a child he Background / Root Causes
was mesmerized by the display of sweets; creamy white with l Born into a respected family
silver leaf on top, or brown round balls oozing liquid sugar. l Runs away to Delhi with his cousin
Jumping alongside the bullock-cart which brought in the
harvest, he never cared much for the industriousness of his Delhi Experience
father, or his elder brother, nor for his four sisters who certainly l Engages in unprotected sex with sex workers
would need a dowry very soon. Hanging out with his cousin
l Contracts TB and completed treatment in Mother Teresa Home
was what he liked best, shooting pigeons with a catapult, or
l Return to old habits after seven months
jumping the train to Patna, the darkness of a cinema, celluloid
dreams. Back home he would fight with his elder brother, or fight at school; he seemed to incite violence Ashram Intervention
wherever he went. Waving the wisdom of his father stubbornly away he and his cousin escaped Bihar, as l Love, care, daily medication and good nutrition
have so many Bihari boys done before them, only to end up in Delhi, cleaning utensils and washing dishes at l Prompt diagnosis and long-term rehabilitation
a roadside dhaba16 or tent-house. How can a young man keep himself from stumbling? There are no role
models, or any rules. The only encouragement given was to join the debauchery, to laugh with the fools, to Medical Summary
share in their conduct. With no knowledge at all concerning the dangers of sexually transmitted diseases he l Age: 25
sought entertainment with the flowered girls of GB Road. A month's wages of 1500 rupees17 did not cover
l Diagnosis: HIV with Pulmonary TB
the pleasures to be bought. He turned to the girls walking the streets who offered sex for only 10 rupees. A
l Prognosis: Reserved, as long as complications due to HIV/TB do not develop
sad encounter in a park, a few minutes, no condoms, a wilted flower, is this love? And then, he lost his strength,
his appetite, and his will to live a meaningless life. The guys at the tea-stall advised him to seek help when he
couldn't rise from his cot anymore: “Go to Mother Teresa's.” So they bundled him up in a rickshaw and
dropped him before the gate of the“House of the Dying” .
The nuns took good care of him, a doctor prescribed ATT and under his supervision, the course of medicine
was completed. Seven months later, he left the care of the sisters and started working again while living on
the road. With his return to work, Santosh also returned to the vices which were habits of long standing. It is
so hard to live a better life, not knowing what is best; no one ever told him. His home for the next two years
became the area near the ISBT flyover, straddling the Yamuna riverside, a concrete Moloch in whose darkness
the homeless huddle; sorting scraps, abusing substances, hiding from the light.
The waters of the Yamuna, swollen by monsoon rains, flood the river banks. Makeshift dhobi ghats18 vanish in
her surge. Daily labourers seeking shelter from the lashing rain mingle with other homeless in the wet
comfort of the flyover: the rickshaw wallahs, rag-pickers, addicts and beggars. Their beds are blocks of
concrete and a blanket to share. Santosh lay alone, no one was willing to share his slab of concrete, violent
coughing and spitting of blood kept others at bay. An ex-patient of Sewa Ashram had compassion upon him
and brought him by rickshaw, braving the rain, to our community.
The homeless are afraid of big Government Hospitals, afraid to even look in the eyes of high caste doctors
who will reprimand their ignorance. Its buildings are huge, intimidating, security guards wield their lathis19 at
the sight of a person in rags. The destitute wouldn't even think about going to such a place, rather they turn
to quacks, a local Gurudwara or an Ashram, anything better then a “sarkari” hospital20; “no commission, no
admission” they joke. At our clinic a relapse of tuberculosis was diagnosed, treatment given, and like all
patients at Sewa Ashram, an HIV test was performed. The result was positive. Two months later, Santosh is in
the best of spirits, does his appointed household chores, joins the pulmonary exercises in the morning and
16 An open eating place on the side of the road
17 Approximately $40 USD. 10 rupees is approximately $0.25 USD
18 Open-air laundry facility
19 Heavy bamboo or iron stick used as a weapon
20 A government run hospital
22 23
HARI
Hari: a bird-like face, scrawny features, a sharp prominent He was a young man now, who has a skill. Because he never made a penny and the bus to Delhi stopped in
nose, beady alert eyes, forty years old. Someone from Narela front of the shop, Hari climbed on it, to seek a better job. For the next ten years he worked as a sweet maker in
sought help for their neighbour and we found him alone in a bustling Old Delhi, finding entertainment in cinemas and, of course, the brothels of G. B. Road. It was only a
cramped dirty little room, the stale air was infused with the few years ago that he saw that billboard, the first time he heard about condoms. The girls never insisted and
smell of rotting flesh; the heat was suffocating. At the Ashram ignorance was bliss. Now he is a broken man, old beyond his years. I assure him that he will become strong
we washed him, then put him on the bandage table. His back and fat once more.“I was never fat,”he replies,“I'm skinny but strong” .
and buttocks carried open bedsores, pulse slow and
temperature low, the X-ray looked alarming. His breath Background / Root Causes
wheezed laboriously through a constricted airway, his l Born in poverty, harsh living conditions, malnourishment
tongue was covered by oral ulcers, his voice was almost l Ailing Mother exploited by unscrupulous health providers without providing proper treatment
absent. He was in a bad shape indeed. We decided to admit
l Parents and two brothers subsequently died of TB
him to St. Stephen's Hospital.
l Child abuse and child labour
One week later, he returned to Sewa Ashram in the ambulance.“Satisfactory” his discharge papers read.“How l Illiterate: no educational opportunity
to define that?” I muse. We sit together, his papers in my hand: “Diagnosis: immuno-compromised state l Effective healthcare inaccessible to parents, though his childhood TB is treated
(retroviral) with pulmonary Koch's.” And “Absolute CD4 154,” I read further then ask him,“Do you know what
HIV/AIDS is?” He bites his lip, then murmurs something in Hindi about “Ganda kaam, doing dirty things, by Delhi Experience
which you get it.” He remembered seeing a billboard on G. B. Road. The big capitals “SEX” he could read but l Abandoned in Delhi by uncle
not more. A friend knew some more, “You need a condom, else you become sick.” That was about all these l No awareness of HIV/AIDS when first visiting sex workers
men understood. Now he still didn't know, so I explained as if speaking to a child, slowly, in a language he is
l Too late for prevention of HIV transmission and early detection of TB
able to understand. He nodded his head, still biting his lip.
I asked him about his life. “Bihar” he sneers. He turns gloomy as he relives his past. He remembers the dark Ashram Intervention
room he grew up in, the poverty and hunger, the labour he had to perform seven days a week, the constant l Free medical care, hospitalisation
beatings from his uncle. When he was seven years old his father died of “coughing and fever,” two years later l TB treatment including daily medication, nutritious food, and restful environment within a
his mother also died.“Tuberculosis,” some doctor said and made her pay for injections over a period of two community
months, before her death. Every two years a family member would die of TB without receiving proper
treatment: his father and mother, then his two brothers. Only he and his younger brother survived. Medical Summary
l Age: 40
When Hari was ten years old, he himself became sick with “coughing and fever.” Four months of medicine l HIV Transmission Route: unprotected sex with sex workers.
saved his life, though he was too weak to be of use any longer. His abusive uncle, who was eyeing his parent's
l Diagnosis upon arrival at Ashram: HIV and re-infection of TB
hut, invited Hari to travel with him to Bombay. When the train passed Delhi and the whistle blew for
departure, his uncle pushed him out of the train. When he relates this to me, tears come to his eyes. He bites l Prognosis: Fair. Both his lungs have been more than 50% damaged by TB. He is also HIV positive
his lip once more and then is silent for a while. with a low CD4 count. ARV has to be initiated
Meanwhile, I reflect on a recent newspaper article with the heading:“Over half of our children abused.” In it
are the results of the first National Study on Child Abuse, covering 13 states and a sample size of 12,446
children. The numbers are shocking: 53% of children have faced some kind of abuse: physical, sexual or
emotional. The study found that boys were as much at risk as girls. The report itself also mentions child-
labour and estimates that there are 110 million child labour in India. It's officially illegal, although present
everywhere. Little boys are being exploited and abused. Without little boys, the city of Delhi would grind to a
halt.
Old Delhi Railway Station, platform number one; Hari, ten years old, scrambled to his feet, wiped the tears
from his face and the dust from his clothes, then proceeded to the exit. He had never seen such a big building,
never seen so much traffic. He took a deep breath, then merged with the beggars. One morning he woke up
with someone pulling his sleeve. A kind rotund man with an expensive watch offered him a job and
promised to pay Hari forty rupees a month. For fifteen years, Hari worked in a sweet shop in Narela, seven
days a week from early morning till late at night. His bed was a mat in the corner.
24 25
SHYAM
Shyam peeked through a slit in the door into the dark inquired about his children she bluntly told him that they were dead. She packed her things and
room where his father was sitting among other men disappeared to Bengal, Shyam would never see her again.
playing cards at high stakes. The room was dense with
tobacco smoke, a roaring of voices and the breaking of It seemed that his life now revolved around railway stations and TB hospitals. From the year 2004 to 2006 he
bottles. Trembling he stood there, anticipating how his was admitted 5 times in the TB hospital. After discharge he continued the DOTS program while living at the
father would return in the night. He would probably station. He knew now about HIV/AIDS though he continued to have unprotected sex. Heroin became too
smash a few pieces of furniture before turning his expensive, so he switched to injecting drugs, which where easily available over the counter, no prescription
anger on him and his brothers. Once more Shyam required, in hundreds of Delhi's pharmacies. He lost control over things and his medical papers vanished, no
peeked through the door and saw his father one kept track of his clinical condition, his treatment was not strictly followed.
intensifying the stakes with much bravado. A chillum
with hashish21 passed along, another bottle opened. It was then that we found him, when his last strength had left him. After a quick clean up, he was taken to the
Then Shyam turned away, disgusted with those men, laboratory for a chest X-ray, HIV testing +CD4 count. A TB drug-sensitivity test was taken too. His health
hating his father for the example he has been. His improved; it seemed community life strengthened his faith in himself; he had a new lease on life, all was not
father's alcohol and gambling addiction has ruined this family of poor farmers. His younger brothers are lost yet, or so it seemed. He often talked about his mother and wondered if she was still alive. He longed to
already following in the same footsteps, smoking dope and committing petty crimes. His mother's face return and see her once more.
wrinkled beyond her age she was worn out by the cycle of sorrows and the abuse of her husband. The
shelves in her kitchen were empty, outside the land was barren. However, after three months his condition deteriorated, breathing became laborious, his appetite
diminished, asthma attacks would bring him to the clinic in a panic. We moved him to the room nearest to
In the night Shyam wrapped some clothes in a bundle and left his parental home descending the alcohol the clinic. He lived for another month, it was painful to look at him, there was not much we could do for him
steeped mountain of Uttarakhand. Little boys, fourteen years of age, find jobs easily as they are in high besides supportive medical treatment. The last two weeks he lived on a diet of only apples, all other food he
demand by tea-stall owners, roadside restaurants, or any adult person who needs a hand; no need to pay the rejected, waving his hands in disgust, talking was near impossible. Then the end-battle came; five days of
little ones. He learned the tricks of survival in the big city. Shyam bought a tea-kettle and served hot chai in intense suffering, fighting for life, fighting for air, sucking the oxygen out of the mask, until his heart couldn't
train compartments along with bidis22, tobacco and matches which he carried in a box slung on his stand the tension any longer and broke. Shyam's lifeless body, bent over on his knees as if in prayer, the
shoulders. He saved the money that he earned for a better future, somehow. In the darkness of the railway oxygen mask in a last desperate grasp.
station he would meet the fleeting glances of women with seductive eye, accentuated by black kohl.“Only
ten rupees,” ruby red lips whisper. Love comes cheap at railway stations, minor girls or boys up for grabs. Background / Root Causes
Under billboards proclaiming safe sex, the illicit flesh trade thrives, killing the innocents who have no l Born in rural poverty
comprehension of virus or bacteria, mere children who never learned to read or write, doomed from the l Child abuse by an alcoholic father
beginning. Shyam is just one of them.
Delhi Experience
Four years later, big enough to drive a rickshaw, he teamed up with the guys of Yamuna Bazaar. In the shadow
l Ran away to Delhi for work opportunity
of a bridge their vehicles were parked, huddled in groups. Under the cover of a blanket, they inhaled heroin.
l Attracted to sex workers and influenced by Rickshaw Wallah lifestyle of drug addiction
The magic of brown powder turning into a blackish liquid and inhaling the serpent-like wisp of smoke, a
rushing of the blood, a state of utter tranquillity; back in the womb. Reality calls. Woken up by hunger he l Dysfunctional marriage
cycles to Old Delhi station. First he has to find a paid load to carry on his rickshaw and then have breakfast. He l TB and HIV diagnosed and treated, but no follow up when he defaulted on TB treatment.
day-dreamt about a normal life; a house, wife and kids, then his thoughts go to his mother; would she still be l Information about HIV prevention came too late
alive? He longed to see her after these many years and prepared to travel home. On arrival he was shocked by
the sight of his mother, she seemed to have shrunk. Bent over by sorrow she kisses his hands. Father died the Ashram Intervention
way he had lived, drunk and abusive, his liver turned into a stone. His brothers? God knows. Evil rumours
l Taken in by Sewa Ashram when he was again weak and ill
abound; thieves, gamblers, drunks. He promises his mother to be a better son, to marry and provide for her, to
give her grandchildren, give her a better life. In the year 2000 he brings a bride to his mother's home. Both l Accepted into the community, given holistic care, counselling and training
families agree, the knot is tied and the couple circle the sacred fire, man and wife till death does them part. l Treatment chest infection COPD was attempted but he deteriorated further developing cor
Nine months later the first child was born, then another one. It never became the model-family Shyam pulmonale which could not be reverted in time with the resources we had.
envisioned, his young wife was stubborn and difficult, he himself was increasingly addicted to heroin.
Medical Summary
Then sickness fell upon him; pulmonary tuberculosis and HIV infection was diagnosed and he was admitted l Age: 37
to a government TB hospital for 5 months. His wife and children were tested for HIV, their result was negative.
l HIV Transmission Route: Injecting drug use / unprotected sex with Sex Workers
But another test would be required for his wife, at the end of the incubation period. His woman however had
l Diagnosis: HIV with Pulmonary TB, Bronchial Asthma with pulmonary artery hypertension
made up her mind; a last time she visited him in the hospital, to announce that she would leave him.When he
l Outcome: Died at the Ashram on June 10, 2007.
21
Hashish (more commonly called hash) is a potent form of cannabis
produced by collecting and processing the most potent material that
female marijuana plants naturally generate as part of their growth cycle.
22
Small, brown, hand-rolled cigarettes 26 27
GEETA
Geeta's old mother reminded me of a character out of a Dostoyevsky around mine, softly pressing a last sign of life. A few more days she remained in coma, spasmodically gasping
novel. White-yellowish wispy hair, cragged face, her worn hands for breath, hands clutching her chest, mother at her side, docile, stupefied, overwhelmed by the amount of
clasped in supplication, adding theatrics and drama to her poverty, suffering, sickness and death she has known in her life. Once more her mother wiped the sweat from
desperation. Ahead of her she pushed a veiled young woman, “TB,” Geeta's forehead, mumbling her name, when the light went out. A power-cut of only four minutes cut off the
the mother cried out with a hoarse voice,“My son suffers from TB, oh fragile thread of life for Geeta. When the light popped back on a wailing goes out, hysterically the mother
God, how do we survive, no food, no money, a leaking cot to live in. I beat her breast, lamenting life and all its curses. Two months after Geeta died, her mother died too. Both are
have no breath left, no strength to carry my old carcass, we are left buried in a Muslim cemetery near Nizamuddin, Delhi's famous Muslim quarter, the birthplace of Nur Islam,
alone, me and my only boy, and I won't live another day. Oh God we Geeta.
are dying, what will become of us, oh Baba, my benefactor, my god, I
throw myself at your feet, take my son, he is yours.” Background / Root Causes
l Born in poverty
I stared at her son, a young woman, her long slender fingers, adorned
l Uneducated
with cheap rings and pink nail-polish held the sari as a veil before her
l Suffered from TB
eyes. Puzzled I take the girls trembling fingers in my hand and lift the
veil from her face. The first thing I see is beard-stubble, then painted
Delhi Experience
lips, a nervous tremor upon them, then her slightly embarrassed eyes 23
l On the streets of Delhi in the company of other hijras
reading mine.
l Contracted HIV from promiscuous lifestyle
That must have been about seven years back. Geeta's condition was already very bad, she gasped for breath
like her mother did. I was confused which of them was really the patient. However, mother, coughing and Ashram Intervention
spitting like Geeta, helped her to settle in the Ashram. In just a few weeks Geeta became very present, very l Continual acceptance and medical care provided
loud and very demanding. It was a lot of fun, but also really hard to keep her satisfied, and prevent her from l TB treatment provided; Multiple defaulter of TB and HIV treatment
running off or giving in to her demands of hair-oil and shampoo of a special brand and make-up, lipsticks, l Surrounded by a community of caring people
bangles, new clothes and special treats to eat. Geeta was incredibly fun-loving and had a great need to love.
l Provided hospice care at the end of her life
She could not restrain herself; she needed more money for her whims and therefore joined her gang of girls
once again, dancing for money, being spoiled by boyfriends. Geeta's sexuality is what they call the 3rd
Medical Summary
gender. She celebrated this in fervour and in a rather self-destructive way. She loved to love - it eased the pain
l HIV Transmission Route : Unprotected sex / sex worker
of not really being a princess - and in her heart she felt special. After weeks of carousing around she would
find her way back to the Ashram. Breathless she would sink on what would become 'her' bed. Many times she l Diagnosis : Immuno-compromised patient with MDR TB
left and as many times we received her back, each time looking more wasted than before. l Outcome : Died of pneumonia, a complication of TB.
On one such occasion I felt it wise to do an HIV-test. She reacted with surprise when I mentioned this to her,
like how dare I think such a thing. She knew what I was talking about; we are open about such things here. A
few days later I approached Geeta carefully, though my eyes told her the story; the result was HIV-positive.
She was stunned! I saw her grapple with the fact for just a few minutes, then she reached for the scissor, cut
her hair and removed her rings; no dancing anymore. Dressed as a man, she looked even weirder, so very
camp, this was definitely not her. However, she was not able to abide by the rather relaxed rules of the
Ashram; she drank whiskey, used foul language and had boyfriends. Not long after that she donned her sari
once again and danced for money and love. Her health deteriorated, she lost her strength and beauty. She lay
sick in her mother's decrepit hovel harassed by the “girls” who would force her to dance once more. After they
carried her by the hair over the street, her face in the gravel, she came back to the Ashram, sobbing all over,
her face a bloody mess and a black eye. As she defaulted many times with ATT drugs and even ART, her
condition went downhill.The TB bacteria in her body had metamorphosed into multi-drug-resistant strain; a
deathly combination of AIDS/MDR-TB devastated her body.
Geeta's old mother shuffled around with bedpans and toilet-paper. Geeta was in isolation in a separate room
at the Ashram. Her mother sacrifices the remnant of life left to her, to care and be with her only son Nur Islam,
as she stubbornly referred to Geeta. Both were dying. Geeta was breathing through an oxygen-machine, her
eyes were open but could not see anymore, her hand responded to my hand, slowly her fingers closed
23 Eunuchs
28 29
MAYA
Maya “Illusion” is her name, or she might be named the answer, but I guess it has to do with love, devotion to the poor, the marginalized. Without compassion for
after the mother of Buddha, who can say? the patient, no amount of mobile clinics, DOTS programs for TB, counselling centres or free syringe
Certainly not Maya herself, it all happened in a distribution will be able to stem the tide of HIV/TB. The fact that Maya and her community are marginalized
haze. She was born as a boy named Salim, in a poor says it all.
Muslim family living in a tiny village in Rajasthan.
Her Father would walk many miles a day, vending On paper, programs look good, nicely embossed with a logo, prepared by managers seated at a desk, while
textiles and his mother farmed a tiny plot of barren the air-conditioning zooms comfortingly. On the basis of survey-results plans are drafted; conferences are
land with the help of five children who did not go attended, annual reports prepared, and then these board-meetings, the vanity of it. The destitute of Delhi
to school. Salim had to do many chores around the are like a lost tribe, uprooted and struck down, driven to the margins of this rapidly developing city. A holistic
house, scrub plates, pots and pans, tend to some approach, whereby the homeless poor are offered community-life, health/care, education and training,
scrawny chickens, or make cow dung cakes24. One might bring about a change. I say it again: the sick destitute do not need a quick fix; they need community, a
fine morning Salim was playing at the roadside, so place to live.
engrossed in his game that he didn't hear the loud
cackling approach of a group of eunuchs or hijras. All of a sudden they descended upon him: “Such a cute I supported Maya by her stick-like arm while we shuffled towards the TB ward. Her bed was near the entrance,
boy!” one cried out. The “girls” were all over him, giving him sweets, pinching him, like measuring him for fresh air, the song of birds. There was no argument when the scissor cut off her tousled hair, she kept her
slaughter, even looking at his teeth. They gave him something to drink too, its bitter sweet taste nose-ring though, the only thing left. Maya never regained her health, her liver suffered of cirrhosis, unable
overwhelmed the boy, things started to turn before his eyes, then everything went black. He woke up naked to process the medication.We placed her under closer scrutiny in one of the two beds reserved for the dying.
in a strange house, cooed over by a heavily made up woman.“Hi sweetie, I am Dolly, your mother.”The lipstick Maya was with us for only nineteen days, her last five days were of an intense suffering, like being in hell, her
amidst the beard stubble, the brutish face, the hoarse voice, the beady eyes adorned with massive black lines, hands clawing the air, gasping for breath in the oxygen mask, until finally her spirit was set free, discarding
pink and green, made Salim sit up in fright. Dolly sweet-talked the eleven year old boy and handed him new the body and the pain within.
clothes, in vibrant colours, a lot of pink, they were girl's clothes. It was then that 'he' became a 'she', Maya was
Background / Root Causes
her new name.The girls adored their new sister, they dressed her up, taught her how to dance, took her along
l Born a boy into poverty
to marriages or births, clapping their hands demanding money, be blessed or cursed. In the night they gave
her this bitter-sweet liquor to drink. In the morning she would wake up, ravaged and in pain. l No education
l Child labour
Three years after her kidnapping Maya and the girls were dancing at a wedding. Among the wedding guest
l Kidnapped by hijras as a child
were Maya's parents, they recognize Salim in the young girl dress. They made a hue and a cry but the hijras
outsmarted them, it was their profession. Maya remained in the grip of Dolly, her master and guru, she Delhi Experience
danced for money and was drunk at night. When Dolly died, someone else took possession of the house and
l Sexual exploitation and abuse
kicked the girls out. Maya ended up living by the dholak-wallah25 in the Yamuna Pustha slum, also Delhi's
l Developed alcoholism
best known address for heroin. She never touched the stuff though she was a drinker, she preferred the hard
liquor. Yamuna Pustha was Delhi's biggest slum situated on the grimy banks of the Yamuna River. In an effort l The 'Guru' died and she ended up in a slum in Delhi
to save the dead river, the famous slum was bulldozed in favour of green lawns and fountains. l When the slum is demolished, she moved under the flyover
l Continuing the hijra lifestyle, she danced and drank
The Pustha community scattered out towards the northern suburbs of the city. Maya and a remnant stayed
l Despite NGO campaigns in Yamuna Bazaar, HIV/AIDS messages were not assimilated
behind, the flyover at Yamuna Bazaar became their home. Yamuna Bazaar, home of the homeless, a
community of destitute, beggars, rickshaw-wallah's, addicts, kids, hijras and the mentally ill. The temples in
Ashram Intervention
this area are what attract the poor, because of the opportunity to beg from the thousands of middle-class
l At Sewa Ashram there is community and love
citizens who come to pay homage to Hanuman at his temple. The dancing business is brisk; Maya could
hardly keep up with it. Her liver was playing up, her lungs too, she lost sight in one eye, her stomach was l Health care is provided along with long overdue health education
swollen, the alcohol was taking its toll.There were nights she did not remember the next morning.The life on l Opportunities to explore her creativity and other activities that might be different from her past
Delhi's Wild Side was killing her. experience
They came in the morning to the Ashram. They had arrived by bus, and were quite a sight: one guy with one Medical Summary
hand missing, the other missing a foot, both drunk. The two hijras supporting each other, Sapna and Maya, l Age: 35
were both ill. It was then that I learned her story, amazed that our paths must have crossed many times these l HIV Transmission Route: Sexual
last ten years. I was amazed at her ignorance of HIV/AIDS too, since Yamuna Bazaar is “covered' with NGO's.
l Diagnosis: HIV with TB. Liver failure due to cirrhosis
“Why are we not reaching these people, what is amiss with the communication?” I ask myself. I do not know
l Outcome: Maya died at Sewa Ashram on June 11, 2007
24 Used as fuel for cooking
25 Drum-manufacturer
30 31
SURYA
Sunday mornings I often stroll along the putrid will be able to understand fully the concept of a virus, bacteria, white blood-cells, red blood-cells, how
embankment of the Yamuna River, different smells infection occurs and how to actually live with HIV. It is communities as Sewa Ashram that can offer him the
assault my senses: filth, human excrement, burning opportunities for growth, literacy, skills, freedom of choice, a healing of the inner and outer man.
plastics, tandoori roti's26, the stench of urine and
the vapours of scorching flesh from the nearby Yes, Surya's father and mother both died of “coughing”as Surya almost did too.
burning-ghats27. It is not a nice sight this
“boulevard” along the dead river Yamuna, though it Background / Root Causes
is a peaceful shelter under the open sky for l No education, illiterate
hundreds of homeless and daily labourers, many of l Orphaned and left with an uncaring relative
them sick, unable to rise from their spot. I scan l Child labour worked in a roadside restaurant
people's eyes, observe the thinness of their limbs,
gaunt cheeks, laborious breathing, then kneel Delhi Experience
down and offer help. My demeanour creates trust, l Ran away as a child from Nepal
the beard, the dress; obviously a Baba28. “What is
l Seasonal work cleaning plates for wedding parties
your problem?” I ask. Then,“You come with me to the Ashram?” Vacant eyes stare into mine then slowly nod
l Non-drug user
yes, giving a cough for answer. I mobilize some guys who are just hanging around and wave the ambulance,
parked in the shadow of a flyover. After only two hours the ambulance is full; about seven or eight very sick l Lack of awareness regarding HIV or protected sex
and very dirty destitute leaning on each other; it would be good to have air-conditioning.
Ashram Intervention
When I saw Surya squatting at the riverbank, I was alarmed by his paleness and his light yellow skin colour. He l Discovered by riverside in critical condition and taken directly to St Stephen's Hospital
looked anaemic. His hands were pressed on his stomach as if in pain. We deemed it wise to admit him in St l Medical care, love and counselling provided
Stephens's Hospital. After twenty-seven days, his discharge paper read: IMMUNOCOMPROMISED STATE
l Proper nutrition resulted in 6 kg weight gain in one month
WITH LIVER ABSCESS WITH B/L PLEURAL EFUSION & ASCITIS. TUBERCULOSIS & HIV+. Today Surya is on ATT
treatment, his CD4 count is just above 400, he is skinny but doing well. He attends the yoga in the mornings Medical Summary
and evenings. After one such session we sat down under the tree and he told me his story.
l Age : 25
His childhood was like that of so many little Nepali boys; roaming around, exploring the mountains, never l HIV transmission route: unprotected sex with professional sex worker
seeing a school from the inside. Then his little brother died after he fell down from the mountain. It was time l Diagnosis: HIV with pulmonary TB, immuno-compromised liver lesions. Emaciated, only 30 kg
for Surya to grow up and start working. He was brought to his aunty in Kathmandu to get a job, ten years of upon admission
age. Surya thus became one of the hundred of thousands of tiny, illiterate boys serving chai and food in l Prognosis: Bad because he left Ashram and is likely neglecting treatment.
roadside restaurants over the length and breath of India and its neighbours. Hardly anyone noticed them.
The payment went to his aunty since both his father and mother had died in the span of two years. He told
me they died of coughing!
There was nothing left for him in his childhood home. He could fare better without his shrewd aunty taking
his salary. He crossed the border and took the train to Delhi. The catering business in Delhi is thriving where
thousands of weddings are celebrated in an ostentatious style all over the city and cleaning dishes is a
profession of its own. They live by the banks of the Yamuna. A bag holds all their belongings; a towel, spare
pant and shirt, a comb and a little mirror. Their bed is a cloth spread out on the ground. In the mornings they
wash their bodies and clothes in the black Yamuna water, rinse their mouth, loudly gargling then spit it back
in the river. When the summer heat settles on the city, the bridal couples escaped to the hills and the now
unemployed men play cards under the flyovers smoke ganja and tell stories from home; how they used to
hunt with a catapult or spear, how good everything was then; people were poor but they had a heart, unlike
this city that eats the poor. On a particular lonely night, he went along with the others to a brothel, where the
girls were nice and no questions were asked. It was only once that he went to such a woman, he assures me,
only once since he could not afford it. I am inclined to believe him, the expression in his eyes was sincere,
innocent. He was surprised when I showed him a condom, listened with attention when we explained.This is
new for him, but he understands, a little. It will take some time, a long time, before a young man such as Surya
26 Roti is Indian Bread made in a tandoor, a cylindrical clay oven in which food is cooked over a hot charcoal fire
27 Riverside cremation area
28 Meaning “father” used as a term of endearment in India, especially
for religious figures or sadhus 32 33
NEERAJ
On the last day of the year 2006, the headlights on our thought that the cough was due to the smoke. Gradually his throat became painful and his voice hoarse. In
beaten-up ambulance once again pierced through the the night, fever and mosquitoes tormented him. He skipped breakfast as he was not hungry anyway.
black smog which hung as a vast cloud under the Leaning on his bamboo stick, he would watch the cars, too weak now to chase the urchins. Winter
Yamuna Bazaar flyover. The searchlight shone upon descended on the city. A chilly fog intermingles with exhaust gasses and the smoke of roadside fires. The
emaciated silhouettes, bony limbs covered by a rag, feet surrounding looks hellish, shadows danced in the orange glare of fires. Neeraj gazes at the concrete dome
hanging dangerously over the curb of the pavement. above him, unable to rise himself - he waits for death to come. A sudden blue light throws its circling
Zombie-like shadows floated like ghosts through the reflections on the dome above, a hand takes his, fingers seek his pulse, then lift him up.Welcome home.
murky cloud of exhaust gasses, pierced by light-beams
and cars. At some street-corners small fires smoulder, a Background / Root Causes
burning rubber chappal, electric wire, plastic, with black l No education
gnarly hands and feet above it. The noise is so loud that it l Child labour
becomes no noise at all. It was cold, very cold, 5 degrees
l His father died most likely of TB
Celsius. The angel of death roamed around seeking those with no protection, the ill and old among the
l Mother sends him to Delhi to find work
homeless. The stark shape of a rather long and very thin body, partly covered by a rag, makes me stop the
jeep and switch on the blue alarm light. On the pavement I knelt down and looked into the huge eyes of a L Strong attachment to mother
boy of about eighteen. His tall dark naked body was like a bundle of broken sticks, he had no weight at all, it
seems, I easily can lift him up. On the first day of the year 2007, Neeraj lay comfortably on the crisp white Delhi Experience
pillows of St. Stephens Hospital. Diagnosis: Bilateral Pneumonia with pulmonary TB and hepatitis. He l Works as a parking attendant while living under the flyover in Yamuna Bazaar
remained in the hospital during this critical condition for one month, one of our boys attended to his needs. l Contracts TB
l Atmosphere of dirt and polluted air adds to the lung damage
By the time he arrived in our community the weather was somewhat softer, the morning mists gave the
Ashram a dream-like quality. Neeraj sat in a wheelchair and took it all in, the trees, some barren, some with Ashram Intervention
golden leaves, various birds crying out, haze lingering above the pond. Neeraj is now in his fifth month of l Rescued from the roadside
treatment, but both his lungs are damaged beyond repair. Sleeping became difficult, which side to lie on? I
l Admitted to hospital, where he is given emergency treatment and is cared for by one of the
see him sitting on his bed in the middle of the night, his cough accompanied by pain, in his hands a plastic
pot in which he spits. He has gained no weight, and probably never will. It's doubtful whether the TB bacteria volunteer workers of the Ashram
will ever be truly vanquished. There will most probably be a relapse. I wonder for how long he will be among l Care and community provided by team at Sewa Ashram
us, a year, maybe? My notebook lies on the table, Neeraj sits opposite me, a soft, slightly hoarse voice answers
my questions, it almost makes me depressed, stories like these, told with the breathless voice of a Medical Summary
tuberculosis patient, and interrupted by violent coughing. l Age : 19
l Diagnosis: Right sided pneumonitis with TB and Hepatitis.
Born in a mud hut in a village near Fatehpur, Uttar Pradesh. Neeraj was the eldest son in a family of four boys l Prognosis: Bad due to non-compliance with TB treatment.
and one girl. His parents were small farmers. He attended school for only a few days until the teacher slapped
his face.When the monsoon rains flooded the rice-paddies his parents sought work elsewhere. Neeraj joined
them, working like a grown-up, harvesting onions or chillies. The fifty rupees he earned per day was handed
over to his mother. Neeraj did not enjoy a normal childhood as he worked as a labourer. In 2006, his father,
.
who never went to see a doctor, died of“severe cough and fever”No one knew about tuberculosis.
As the eldest son, Neeraj was told by his mother to find a job in Delhi. In front of the Old Delhi station, many
boys and young men hung around, waiting for a job. Any kind of work would do for him. Contractors would
scour the railway entrance in search for hungry able boys, any boy will do. Neeraj went along and cleaned
kitchen utensils for just one day, as it was hard work. Yamuna Bazaar became his address. Some concrete
rubble and bricks mark his little territory, above which was a dome of concrete, the six-lane Yamuna flyover.
Neeraj found himself a good job, watching parked motorcycles and cars at an illegal parking-lot at the
Hanuman temple. He was paid hundred rupees payment a day for preventing glue-addicted kids from
touching the shiny vehicles of the rich.
However, sleeping under a flyover and next to a traffic crossing which is one of the most crowded in Delhi, is
bad for the health, especially when the lungs are already infected by TB bacteria. It was just a cough. Neeraj
34 35
AJAY
You want to see something other than the huge backsides of It was then that we found him on a Sunday morning at the corner of the bridge, a black silhouette in the
buffalos when you have herded cattle most of your life. blazing sunlight, hanging on to a stick. No words were needed. At Sewa Ashram we recommend HIV tests to
Barefoot on eroded soil you blindly follow family all new-comers. It is amazing what comes to the light when they tell their stories; the mud hut they called
conventions, docile like the cattle in whose dust you walk. home, the hardships of small farmers, the hunger and the child-labour, the ignorance and exploitation and
Garlanded with fake rupees, eighteen year old Ajay ties the the resulting drug addiction spiralling downward to death on the streets. I ask Ajay if he would like to go
knot and circles the fire with a girl of only fourteen years. At back to Bihar, walk behind cattle again. He contemplates this, shakes his head in the negative and mumbles,
the age of sixteen she bears him a son, and then two more enigmatic,“Anything is better than being a farmer.”
children follow. The women putter around the hut or scratch
the land, trying to bring it alive, but the earth is robbed of its Background / Root Causes
nutrients; the crops wilt as soon as they have sprung up, or l Uneducated
monsoon-floods wash away months of intense labour.When l Born into rural family with limited prospects
the government acquired the riverbank land, the family was
willing to comply and accepted the meagre re-imbursement. They thought that anything is better than Delhi Experience
being a farmer, they did not even wish that on their enemies. Ajay was happy to set his sights on something l Found job in illicit trade
different than buffalo backs. He promised his wife and parents that he would send money soon then
l Exploited by employer, developed drug addiction
travelled by train to Delhi, leaving Bihar and his past behind.
l Engaged in petty crime to support his drug habit
It took him a while to adjust to the blazing sunlight before he was able to scan the area in front of Old Delhi l Contracted TB and HIV
railway-station. After a few days hanging out at the station, asking around at chai-vendors and coolies29, he l Began DOTs program at NGO – dismissed for chewing tobacco
was offered a job. His employer was a rather shady person who dealt in various goods of illicit nature. l HIV test performed by addiction centre but results not provided
However, Ajay was paid eight rupees a day, the house was nice and the food was good too. One of his tasks
was to courier black-market alcohol, in the night he pedalled his rickshaw to a government outlet. In silence Ashram Intervention
cases of liquor were loaded, which Ajay, simple soul, transported to his boss. A special treat was always l Caring community with daily medication, healthy food and restful environment
prepared for Ajay, two slim cigarettes, which, when he smoked them, brought dreams, then deep sleep.
l Counselling and education
Unaware of the content of the cigarettes he grew addicted to heroin. For three years his master had him in his
grip. Dependent on the heroin, Ajay was willing to do any kind of service demanded. When he lost his Medical Summary
strength and sanity, he lost his usefulness and was thrown out.
l Age: 24
Now Ajay had to fend for himself, an addict among the addicts he learned their trade fast.The scar on his face l HIV Transmission Route: Injecting drug use
tells me he was a pick-pocket; it was probably carved during an attempted robbery of someone who wasn't l Diagnosis: HIV with Pulmonary TB, Chronic Obstructive Pulmonary Disease. Left lung is collapsed.
sleeping as deeply as Ajay thought. Heroin addiction is a full-time job; it becomes your wife and your life.You Pulmonary function is less than 50%.
have to score as soon as you wake up from your dreams, like waking up in hell.Ten years passed; but for Ajay it l Prognosis: Fair. Undergoing TB Treatment. HIV stable, with high CD4 counts not yet requiring ART
was one very long day and one very long night. He never went back home, never saw his children and wife
again. He did not know where they lived nor did he care. He would hold his hands up, like a question,”What to
do?”
He is sure that the HIV transmission must have been through shared needles, he would shoot anything and,
according to him, was too wasted to have sex with anyone; it must have been the needle. He somehow
expected it, they had told him once at a centre for addicts in the infamous Yamuna Bazaar area. Though the
warning came too late, his condition took a dive. More dead than alive a colleague brought him to a Christian
NGO. Tuberculosis infection was diagnosed. Ajay was enrolled in a DOTS program, but an HIV test was not
done. An addict remains an addict, Ajay missed chewing tobacco which was not allowed, however, he did
this on the sly until he was found out and discharged for this minor transgression.
On returning to Yamuna bazaar he went to the centre for addicts for free syringes. The doctor confirmed TB
and he was provided a regular DOTS treatment. An HIV test was also performed, though the result was not
revealed to him. It became obvious that the medication was not sufficient, but the doctors were flexible and
the medicine was increased to a daily dosage. For another month Ajay tried to survive on the street, though it
was a bed and good food that he needed the most.
29 People who carry loads on their back in exchange for money
36 37
RAM
Ram remembers his father as a tyrant: as someone large The bus-fare to the station was ten rupees, another ten rupees for the bus to Yamuna Bazaar. The remaining
looming over him, who was unreasonable, aggressive, and thirty rupees left to him he gave to a rickshaw-driver who knew where we live. Fifty rupees spent well. An HIV
had an explosive anger. What he also remembers is the test was done almost immediately, the result was positive. The pustules and swelling have disappeared, a
hunger. The hunger was the worst. He was often hungry simple treatment with the proper drugs. His HIV status has been revealed and explained to him.Yes he heard
that the only thing left was to sleep. When Ram's father of HIV/AIDS and condoms before but he never understood. Although he had that weird journey from drug
killed another man, they had to flee the cool mountains of rehab to drug rehab, no one bothered to test him and counsel him, no one heard his complaint, no one really
Nainital, and headed towards the simmering heat of cared. He looks afraid, he thinks I will put him at the bus-stop with only fifty rupees.“Don't worry,” I tell him,
Gujarat. Father sold the plot of land for three thousand “We are your family, we love you, stay with us.”
rupees and headed with his family towards a nondescript
village near Ahmedabad where they settled in a slum. Background / Root Causes
Father behaved with pompous dignity. Five sons, mind l Grows up with an abusive father
you. He behaved as if he owned the place, settling down in l Undernourished from an early age
front of the hut and drinking the three thousand rupees,
the payment for the land. Delhi Experience
l First migration is to Mumbai then Delhi
Ram's father sent his five sons to work and do any kind of labour. None of the children were educated. Ram's
l Becomes sick and seeks help at the local centre for addicts
brothers seemed to be pliable, and did what father said for all those years. Ram however did not - he rebelled,
he had grown up. That last beating did it, he packed his stuff and left for Nainital, where his grandfather and l Misdiagnosed as an addict, prescribed heroin substitute
some uncles still lived. Ram's grandfather made him work in his shop so that he could sit outside, drinking l Is sent to a drug rehab against his will, then discharged without addressing health needs.
chai and smoking bidis. When the cash-box finally contained a thousand rupees, Ram stuffed these in his
pocket and left with a new-found friend to the city of the celluloid dreams: Mumbai. Ashram Intervention
l Diagnosed with HIV
He was a young man when news came to his ears that his father had died. Something seemed to break in him.
l Given prompt medical treatment of symptoms
All the pain came back, dazed. He was in a daze and would scavenge the streets of Mumbai, smoke marijuana
l Counselled about living with HIV
with his mates, until everything dissolved in a big cloud of ganja smoke. His interest in women was waning.
He had had some adventures in the brothels of Mumbai, but as girls were expensive, he prefers marijuana as
Medical Summary
it gave him peace.
l Age: 27
When winter descends on Delhi, many daily labourers, rag-pickers, beggars, scavengers and street-kids leave l Diagnosis: HIV with furunculosis of the skin
the never-ending summer of Mumbai for the season of marriage in the north. Delhi glitters, wedding- l Prognosis: Good, compliant with TB treatment. HIV recently diagnosis but CD4 counts remains
parties are all over the place. At the periphery of the city are hundreds of party-lawns with names like “Richie high and stable, so ART not yet recommended. Patient returned to family.
Rich” or “Temptations” Ram washed the plates and dishes, worked hard, lived under the bridge and smoked
his pipe.
Then he became ill. Fever would keep him awake, pustules broke out all over his body and he felt so wasted.
Unable to work any longer he remained under the bridge. Then someone took him along to the local centre
for addicts. Someone in charge prescribed Adnok, a so-called heroin substitute; it must have been a favour,
since Ram, rather simple, slightly retarded even, was not a smack-addict. However, the Adnok was pleasant,
he worried less, though the swelling in his legs and the rest of his body increased. A sputum-test was taken at
the addict-centre, his name scribbled in a book, a new pair of pants and a shirt provided for him, then, before
he knew it, he was under the guidance of an attendant on the bus to Jodhpur, Rajasthan where he was
admitted into drug-rehab. He was very sick. Why was it that nobody seemed to understand him? Ram didn't
have a drug-problem, he was just sick. The staff in the Jodhpur centre finally realised that Ram was sick and
brought him to another branch of the same organization in south Delhi. In this second drug rehab center
Ram was advised to accept Jesus as Lord. Whatever he would pray then in “His” name, would be given to him.
His pleading for medical treatment fell on deaf ears; they instead told him to“pray” .
A week later Ram was discharged, a fifty rupee note was pushed in his hand, then someone led him to the
bus-stop where he knelt down in despair.
38 39
ALI
Ali was born as the fifth son in a poor Muslim family in Delhi Experience
the suburbs of Lucknow. Father sold whatever was in l Child labour
demand; the seasons defined what was to be sold,
l Mental illness resulted in job loss, social isolation, rejection by family
oranges, towels, watermelon, umbrellas or peanuts. Ali
l No treatment or care facility for mentally ill, ends up on the street
was just one of the hundreds of tiny kids whose laughing
voices reverberated through the narrow lanes of the l Mentally ill are a target for sexual abuse
overpopulated slum. Carelessly they advanced in age,
played with marbles or pushed a bicycle tire around with Ashram Intervention
a stick. The hunger in their swollen bellies did not reduce l Nourished, protected, loved in a safe environment
the joy; they learned to live with it: a cup of chai in the
morning, maybe lunch in the afternoon. Ali was sent to Medical Summary
school, where at least a midday meal was guaranteed, Ali l Age: 28
would wait for the bell to ring, but the dry stuff the teacher dished up was indigestible. He was unable to l HIV Transmission Route: Unprotected sex
concentrate on anything she said, the numbers on the black board twirl before his eyes, it all meant nothing l Diagnosis: HIV. Mentally challenged, confused and confabulations
to him. The pressure to perform became too much for him, not worth the midday meal, he was old enough l Prognosis: Bad, because unable to care for himself or comply with treatment
now to find a job.
A boy of ten years can find a job anywhere, as they are in demand and are the cheapest labour you can wish
for. Ali found a job in a 'hotel' – which was in reality a little shack on the roadside where you could drink chai30
and eat a bite. The little boy cleaned the tables with a rag, washed the glasses, scrubbed the kettle and kept
the coal-fire burning, it was an almost a twenty-four hour job, seven days a week. Ali earned seventeen
rupees per day, which is less than half a dollar. After four months he lost his job. It seemed that there was
something wrong with his mind, although he doesn't know why he had to leave, his boss was furious.
Confused he wandered around. People did not seem to understand him - they wanted to avoid the gaunt
strange fellow. Ali turned into himself, living a life of his own imagination. He crossed the plains of India, and
lost himself in the various personalities who live inside his head. The time that he suddenly popped up in his
parent's house caused consternation. Father had died, from smoking too many bidis, or was it more likely
due to TB, who can tell? Conforming to his brother's and society's expectation was impossible. The bride to
be rejected the funny guy. Ali wandered away again, along the high-ways of India, from temple to mosque,
from Ashram to Gurudwara, living on the scraps which fell from the table.
I observe Ali as he sits before me cross legged. His back is slouched and his neck stiff which makes his
movements robotic. He is very tiny; but his eyes are huge and very alive. He is only 28 years old, though looks
twenty years older. I wonder about his past, but his stories are confusing. He tells me about his love for a
eunuch, a very sweet but sad eunuch, not like the others. He even tells me the way she used to dress in pink,
he obviously admires her, this phantom of his mind. When I ask him if he visited prostitutes, he suddenly
gives me a gem of wisdom:“A poor man should not marry,” then starts talking about the eunuch again, how
incredibly fat she was, but so sweet and sad, dressed in red and green this time. Ali obviously has some
mental illness, in addition to being HIV-positive. We took him along to the Ashram because of his emaciated
appearance, to prevent further illness, to protect him and others. I doubt if we can explain to him even the
most basic knowledge about HIV as the capacity to understand is not there. I gave up further interviewing as
his answers flutter around like the thoughts in his head.
Background / Root Causes
l Born into poverty and an overcrowded slum
l Under nourished
l Limited educational opportunity
30
A sweet spicy milk test that is very common in India
40 41
MUKESH
I will never forget the moment I saw him for the first time, an Background / Root Causes
eleven year old boy sprawled out between some hard-core l Born in poverty
junkies and a bunch of rickshaw wallahs. With an air of l Child labour
extreme unconcern he chewed on a matchstick, his almond l Uneducated
shaped eyes sleepily careless. I immediately figured out l Sent to Delhi to earn money for family
what he was up to. I guess I saw myself, when I was young. I
kind of plucked him out, like a flower, and brought him to Delhi Experience
the Ashram. Mukesh stayed a few weeks then flew back to l Exploited on the streets at a very young age – heroin, sexual abuse
Yamuna Bazaar. I went after him and brought him back
l Drug lifestyle becomes 'normal'
again, but he stayed only for a while. The next time I found
l He bounces around rehabilitation centres and also back and forth to Sewa Ashram
him, two strong dirty hands were strangling his arm, while
another inserted a needle in his vein. His eyes were drowsy l The message of safe sex and injecting practices is repeated over and over, but not heeded
and dark-lined by an intense self-destructive loneliness. He l Contracts HIV and TB
just now returned from a drug-rehab centre where he had
to stay after his behaviour at the Ashram became Ashram Intervention
unacceptable. He managed for five months to follow a rather strict disciplinary lifestyle, though he found it l Timely medical intervention prevents complications from TB
so shallow. He also complained that they did not give him enough food. Mukesh is a growing boy, eighteen l HIV status is determined shortly after contracting the disease
years old now who eats a lot. Mukesh is HIV-positive since his last escapade and he immediately caught TB.
l Sent to drug rehabilitation centre
His is a story I have heard out of many mouths. Born in Uttar Pradesh, Mukesh's childhood was one of poverty, l Returned to Ashram several times
labour, no education, beatings and other hardships. Then, when sickness and death plagues the family, he l Creative outlet in painting. His talent is discovered, and an expressive outlet is opened
was sent nearby Kanpur to earn money. So this is what he did: he sold bottled water at railway platforms and
earned enough to inhale solution, one of the first things a hungry child learns in a big city, before progressing Medical Summary
to marijuana, then smack.When you hit rock-bottom, you go to Delhi. Heroin is cheap; you do not have to pay l Age: 15
for it, if you give your body, the guys pay you. Mukesh is as cute as a girl. Life was like a dream, there was not a l HIV Transmission Route: Sexual abuse, injecting drug use, and sex work
moment he was not stoned, the grimy concrete on which he lay was perfect for him, the broken ampoules l Diagnosis: HIV and TB
and packing of syringes shone in the sunlight, the guys were big and protective, he serves and is served on a
l Prognosis: Fair. CD4 counts remain high. TB treatment completed
wink.
In the night the little ones goes out, armed with razor-blades they would slice open pockets of passengers
thronging through a dense crowd. During one such day, a policeman caught him red-handed. He gave him a
good thrashing, took a photograph, then kicked him out of the city with all kinds of threats. He returned the
day after.
There are some NGOs in Delhi, which are very well known among the addict population, as you can get all
kinds of service; syringes, “substitute” drugs, counselling, an ID card, also a clinic where you can treat your
abscesses or detoxification in a network of various drug-rehabs. I know many addicts that circle around from
rehab to rehab, then land under the bridge again where an abscess develops. All the counselling given to
them is in vain, the message of clean syringes and safe sex comfortably forgotten. As heroine is expensive,
they make-do with drug-cocktails. When they are almost dead they turn up at the Ashram or I find them in a
gutter.
The same applied for Mukesh; spiralling down to ever deeper depths.“You break my heart,” I tell him.“If you
continue to stumble around. Do you see these grey hairs?”He gives me a sly smile, then mumbles,“Sorry Papa,
one more chance, I will paint again.”“Do we have canvas?” I enquire.“Oh yes, Papa, lots of it.” Then he runs in
front of me to the atelier. That afternoon he paints a big flaming sun falling through a sky of fire. He has
incredible talent, though his paintings can be rather violent, as there is a deep, un-confronted pain that burns
inside.
42 43
ABDUL
Better not to place a picture by this story. I will attempt to describe his face and a little of what lies behind cool down, “Here, try some of this,” they said, a brown powder on aluminium foil was handed to him. It
Abdul's rather hard eyes. His small eyes glint a bit these eyes, small, the face looking up as in defiance or knocked him out, he had never tasted anything so good.
inborn pride, a ruler or warrior's look.Though a film of doubt often dims the fire in these eyes, his hands move
then, agitated, a smile curls his lips, a mixture of arrogance and fear. His face is square, built upon a strong Next on his list of things to do was get married; a girl from Bangladesh would be most suitable. A year later
neck, his shoulders and chest give a faint impression of the broadness they once must have had. As his Abdul got married, but he left his pregnant wife behind in no-mans-land and returned to Delhi for an
strength leaves him, he leans on the table. His breath short, his skin is yellow and there are dark shadows exciting life of crime and drugs. Easy money was the only money he knew. He had a family to take care of but
around the eyes.With an air of bravado he relates to me snippets of his history. the need for drugs slowed things down a bit and he ended up in jail twice again. When his son reached the
age of three, Abdul visited his wife and child, and brought gifts and gold. He then returned to Delhi again,
He was born, neither in India, nor in Bangladesh, but right in between, in a sort of no-mans-land. His father where there was another woman waiting for him.
was a Maulvi, a teacher of the Koran. He would make the call to prayer – the Urdu versus which would flow
between his lips, swaying above the scriptures, or going up the minaret to hear and see the call to prayer. Life She was nice, she was married, though she had a liking for him, and for others too. It was probably then that
was good then for Abdul. As an innocent ten years old, he would enjoy flying his kite. Shortly after his sister Abdul became infected with HIV, irrespective of the expansive counselling he received in Tihar Jail. A scrotal
committed suicide and the family was ripped apart. Accused by a neighbour of an illicit relationship, she hernia made it impossible for him to keep up the relationship with this woman. It certainly did hurt and not
couldn't bear the shame and swallowed pesticide to end her life. Abdul's father started a business in textiles, only his pride. A surgery brought no relief as a shoddy job was done in some rundown government hospital.
for this purpose he travelled wide and far. He seldom came home and it seemed that there was another Life became meaningless, his friends were all in the lock-up and his possessions were stolen. Crime doesn't
woman. This caused even greater animosity in the torn family. Abdul didn't want to be caught up in the pay in the end. Abdul sat down with his old colleagues, the rickshaw wallahs of Yamuna Bazaar, played cards
cross-fire and decided that it is better to live life on his own terms. Calcutta was nearby; he just had to cross 'til late in the night, drank with the hijras, and committed some petty crime to just stay alive. His once mighty
the no-mans-land. shoulders wasted away, fever tormented him at night. An ex-patient who was treated for TB at the Ashram
recognized Abdul's disease and brought him to our community. He was diagnosed with pulmonary Koch's
Each morning before daybreak he bought various goods at the vegetable whole-sale market which he (TB) and HIV and urged to stay for treatment the full six months, maybe even longer. He tells me that a work
loaded on a rented push-cart. How he loved that market, the shouting of the salesmen, the haggling that needs to be done inside, in his spirit. His son refuses to see him,“You are not my father,” he says,“You murder
went on, the wads of rupees passing hands. It seemed money flowed easily here. However selling vegetables people for money, I cannot accept.” Abduls hands move in agitation, the smile that plays around the corner
on the Calcutta streets was hard work. He had to push his cart in the heat, try and out-shout the other of his mouth looks like he is about to cry, though then he straightens himself and stares me hard in the eyes.
vendors and deal with the fat police men who wanted a slice of his earnings. At the same time he had to pay 45 days later he disappears.
rent for his room and ensure that he had enough food for his growing body. It was a constant battle, as
money did not come by easily. He thought that there had to be another way. Background / Root Causes
l Family disintegration due to sibling suicide and absent father
There was no one to say goodbye to, so he simply boarded the train to Delhi, unaware that trains would be
his line of business soon. As he entered Delhi he immediately secured a job, which was in a “tent-house” that Delhi Experience
provided catering at weddings and festivals. His subsequent jobs were of a scavenger, as plastic litter was
l Joins up with gang seeking easy money through robbery and murder
aplenty in the city and options run out, pulling rickshaws next, still no easy money. By the time he was
l Subsequent arrest and prison time provides skills and exposure to counselling and education about
eighteen, he was ready for some action. Outside of the cinema he would meets others like him, youth with no
values in life and boisterous. They would talk about the movie and imitate the hero, gun at his hip. Together HIV/AIDS
they often disappeared into the night, looking for some action, maybe even some fast money. l Breathing problems and a dependence on injections, drugs, leads to heroin use
l Past counselling about HIV/AIDS is forgotten, and he becomes HIV positive
A gun at their hip the gang of four roamed at night through railway carriages, dragged their victims to the
l Returning to 'old friends' at Yamuna Bazaar, he develops TB
exit, stole their money, gold and rings, then shot them dead and dumped them out of the train at full speed.
As the train roared on, nobody heard the shot, it was easy money indeed. When a bomb-blast tore through Ashram Intervention
Mumbai, security was stepped up. Now no one could board a train with a gun in his pocket. Abdul did and the
l Brought to Sewa Ashram by an ex-patient who recognises TB
police arrested him. A fast court convicts Abdul under an anti-terrorist law and he was sentenced to five
years in Tihar Jail in Delhi. He laid low in this jail, let others cut themselves up, he thought, instead he learned l Proper medication, good nutrition, and rest in peaceful environment
skills. It was not so bad in his ward. It was almost an ashram for him – there was counselling, he learned to l Acknowledges that inner transformation needs to occur
repair shoes, makes bags and carpentry. It was a time of reflection for Abdul. However, breathing problems
started to plague him in jail. He suffered from asthmatic attacks. Abdul would often double-up wheezing Medical Summary
and gasp for breath. He would call out for a doctor who would come rushing to his aid, a syringe in his hands. l Age: 39
From this however a dependence on injections was born and soon he could not live without it. When he left
l HIV Transmission Route: Unprotected extra-marital sex
the jail, his first search was for a doctor.
l Diagnosis: HIV with Pulmonary TB and scrotal hernia. Asthma and depression
Yamuna Pustha slum. Abdul entered the clinic of a doctor. The doctor does not have the medicine Abdul l Prognosis: Bad, due to combination of HIV and TB treatment. Health further compromised by
required. Instead he said had something better instead and gave him an injection that did all sorts of things dangerous lifestyle choice and likely non-compliance with TB abd HIV treatment
except bringing relief to his asthmatic attack. In panic he sought help from some friends who urge him to
44 45
VINOD
He never knew what killed his father, no one in the presumed that if a person became sick he/she would die. He looked at me with eyes wide, like a child on his
family did – he just died and that was that. In the first day in school. “Did you ever hear of TB, or HIV/AIDS, STD or sexual transmitted diseases?” He shook his
nights, Vinod was kept awake by the violent head and said,“No,” His head was bent in shame. I lifted his chin and showed him a condom. His eyes became
coughing of the old man. The atmosphere in the hut even bigger - he had never seen such a thing. Sex was a thing you did, not something you talked about.
was suffocating: the air was stale and heavy with the Though the girl's eyes and bodies speak sexual language, the verbal abuse hurled around in brothels and
smell of sickness. He remembered his father lying on slums is sexually replete, in spite of the fact that the whole massive business is all about sex, it still remains a
his cot, limbs wasting away and finally never rising taboo. We do not speak about it, we avoid it, we feel shame, it is something dirty, something other people do,
again. When he died, Vinod and his family mourned not me. I take his weight: 36 kilo and then wish him luck. He shuffles back towards his bed, still shaking his
and lamented their loss until the body was burned. head no, not understanding what this was all about.
Then all became silent again and the family returned
to the fields, some one else's fields cutting rice, wheat, Background / Root Causes
tilling the soil until dusk. This was as it was supposed l Medical care inaccessible to family
to be, no one complained. They rose with the cattle l Orphaned and deserted
and when the sun went down, would walk home again. Three years after his father died, Vinod's mother
became ill. While labouring in the field blood poured out of her nose. An effort was made to consult a doctor, Delhi Experience
though the payment he demanded was above their reach. Mother kept labouring until she died. Once again l Move to Delhi seeking employment
the village women came over and wailed, once again the eldest son lit the pyre.Vinod was alone now; his five
l Able to secure a well-paying job
sisters and one brother were all married, the mud hut was empty but for him.The season of harvest kept him
l Friends introduce him to brothels and he embraces a promiscuous lifestyle
alive, though on the horizon, dark monsoon clouds grew. He felt very lonely. There were a group of friends in
his village, Vinod unknowingly played their buffoon. They had great fun in taunting the innocent boy, l In 3 years he never sees a condom or hears about HIV/AIDs or STD's
making him part of their irresponsible behaviour and would leave him in the lurch when trouble ensued. l Illness strikes and he is taken to a Christian NGOs - HIV infection and TB are diagnosed
One quiet evening after the cattle had returned home, the boys strolled by and told him they would leave l Completes standard TB treatment but then relapse
Bihar for elsewhere, and left an address of a factory in Delhi
Ashram Intervention
Some months later Vinod hungry and alone, packed his spare belongings in a bundle and took the train to l Government hospital refers and treatment is continued at Sewa Ashram
Delhi. He thought he had nothing to lose. He went to the same factory that the village boys had mentioned.
l He hears for the first time about HIV/AIDS,TB and STD's
The factory made bicycles parts; they paid him well, 3000 Rupees31 a month. He had never seen so much
money. His living quarters were a cluster of huts built against the factory wall. He shared the hut with six l Caring community with peer counsellors is provided
others, among them were the boys from his village. Vinod was their buffoon again; their laughter was mostly
at his expense. One night they took him to the city, told him in malicious tones that the time had come for Medical Summary
him to meet a woman and become a man. G.B. Road was the address, the girls, flowers in their hair, waved at l Age: 30
him from the balcony. With his heart beating rapidly he climbed the stairs. That night he lost his virginity but l HIV Transmission Route: unprotected sex with professional sex workers
not yet his innocence. G.B. Road is lined with brothels, floors divided by curtains and ply-wood into squalid l Diagnosis: HIV with Pulmonary TB
quarters just wide enough to accommodate a much used bed. Girls are plentiful; for over a period of three l Prognosis: Reserved. Mild to moderate derangement of pulmonary function.
years he always played with another one. Unaware of his HIV status, he continued his escapades in the
anonymity of Mumbai. No one knews him there. Excessive behaviour had no consequences.
When the season changed he returned to Delhi to work in the factory once more. Things were the same in his
hut as his friends continued to taunt him. Nothing positive seemed to come out of it. Then it started; fever at
the nights, a searing pain in his abdomen, diarrhoea and loss of appetite. His condition became rather un-
comfortable for the other men in his room, so they put him in a rickshaw and drove him to Nirmal Hriday,
Mother Teresa's House for the Dying Destitute in Manju Ka Tilla, Delhi. The sisters took Vinod into their care,
the doctor correctly diagnosed him with TB and HIV infection. ATT treatment was prescribed for a period of
six months. At the end of this period a sputum test was done which proved to be negative and the patient was
discharged. Better clinical examinations could have prevented the relapse, he was not fully cured of TB yet.
Two months later he was back at a government hospital, and a doctor brought him to our attention. We took
him home with us. Sitting at the table I wrote some notes in the register. “Were you aware of government
provisions, like free health care?” I ask. He had no idea what I meant, he had never seen a hospital in Bihar. He
31 Approximately $75 USD
46 47
MUKHTAR
Bangladesh, Dhaka, 1986, Muktar was born in a cigarette between his lips. However, addiction is still present; it rages through his body, uncontrolled,
cramped mud hut amidst a bustling family of four untamed, it is not heroin now, but sex. It was only last year that he became infected with HIV from a girl who
brothers, one sister, a worried mother and a hard lived in the nearby slum. He had forgotten to carry condom with him, couldn't find them in the dark night. I
drinking father. The baby grew up, carried around just caught him outside the Ashram with some empty oil-tins he was about to sell. I take him to my room and
by his sister, as there was no place for a small one search his pockets finding only condoms and some suspicious looking aluminium foil. “Muktar” I
like Muktar to crawl around.When the baby became desperately call out, slumped back in my chair, hardly finding words to communicate the impossible
a little boy, a uniform was measured on his tiny body, position he is in.“Muktar, didn't you hear then, didn't you understand?” Muktar does not listen, he does not
a bag slung over his shoulders and, hand in hand hear, he is still that little boy looking through the school-class window, dreaming about the freedom outside.
with his sister, he entered school. During class he
looked out the window and didn't hear any word Background / Root Causes
the teacher spoke. Instead, relieving the pangs of l Born into poor living conditions with an alcoholic and abusive father
hunger, the desire in his belly, is what he dreamt of l Undernourished
as he would wait for the sound of the bell. What fun
l Limited education
it was to leave the school-building screaming,
l No understanding of TB when father dies of it – effective healthcare was not accessed for him
running headlong into the freedom outside. Three
dreary years, he attended school then he gave up,
Delhi Experience
never having been able to concentrate. His father,
l Lived in Yamuna Bazaar, in a 'community' with other drug addicts
who dabbled in shady property deals, made life difficult for him and the family: his drinking and abuse drove
the family apart. His three older brothers were already addicted to heroin, his mother burdened by worries. l Indulge in pick pocketing and petty crime to support his habit
When Muktar was seven years old, he was introduced to drugs too. Now there were four sons using heroin. l Multiple defaulter of TB treatment
Mother became almost insane, trying to make ends meet. Her husband's income was spent on alcohol and
gambling. Her own sons fleeced her, too. Ironically she became a match-maker for money, finding a “suitable” Ashram Intervention
bride for a “handsome” boy. Then Mukhtar's father died - TB, Muktar remembers, only these two letters, TB, l Taken in by Sewa Ashram many times, but due to addiction, he runs away
without understanding what it means. Life was meaningless anyway. His two brothers passed away very l Back in the Ashram, he completes ATT
quickly, probably an overdose, or just killed by someone. Who knows? The other one was still around; more l Finds purposeful work in caring for others
dead than alive.
l Sexual promiscuity follows – and unsafe sex leads to HIV infection
When his mother died of sorrow and their hut was taken over by an evil uncle. Muktar decided that enough l He still struggles with 'lifestyle choices', but is accepted, loved and cared for
was enough.“Delhi is a very good city,” a friend told him,“Drugs are very cheap over there.” So off they went
to Delhi - to Yamuna Bazaar, where the drugs were. Muktar was by now very skilled in cutting open pockets, Medical Summary
with a piece of blade under his tongue, with a sly movement that went unnoticed removing money and l Age: 23
goods out of pockets and bags in the push and shove of Old Delhi Railway Station. l HIV Transmission Route: Unprotected sex with sex workers / promiscuous sex
l Diagnosis: HIV with treated Pulmonary TB
I remember when I saw Muktar for the first time; I had just arrived in India, and was not acquainted yet with
l Prognosis: HIV status is a threat to his life. Suspicion of latent TB because of history of non-
the extreme poverty and suffering which are now part and parcel of my life. Muktar didn't even look like a
human being; hunched under a bridge, his head slung back in his neck, eyes closed, mouth open, dry foam compliance.
and spit on dirty and rotten teeth. I had never seen anything like it. Confused, I turned away to find him again
some months later. It was then that I took him along for the first time. The second time I diagnosed him with
TB, after three weeks of treatment he ran away taking along some blankets to sell. Two months later, I found
him again, more dead than alive, a boy twelve years of age. A short time he would stay and then steal away in
the night. In ten years, Muktar ran away eight times, eight times I opened my arms to receive him back. I
especially remember that one time when he crawled in on his knees, his hands in worn rubber sandals:“One
more chance,” he breathed out. Muktar has actually defaulted on TB treatment over a period of seven years.
It's a wonder he is alive, but is he alive really? I'm not a doctor, though I sense that the persistent conditioning
since the age of seven early youth has ingrained addiction throughout his being.
Finally, his tuberculosis infection was successfully treated with ATT. Muktar became fat. He is part of our team,
works mainly with the patients, washing them, feeding them, putting them to bed, he is good in doing that.
His face, which carries the scars of many fights, looks kind, the crooked nose, the plastic-teeth smile, a
4
48 5
49
GIRISH
“Aauumm,” it is six in the morning, Girish leads a group mingled with pulmonary exercises for around 40 tuberculosis and HIV patients. Those blind eyes of his
of patients in yoga. “Aauumm,” long drawn exhalation. capture my imagination; I ask him what his vision is. “Learning to read Braille and teach others,” he says.
The deeper breath taking along all that is impure, Nothing will stop him his face tells me.
releasing the hold sickness has upon these recovering
TB patients. Arms are raised simultaneously, lowered, Background / Root Causes
then raised once more. In the treetops a black drongo l Lifestyle included activities with high risk of HIV exposure
calls out, swoops over the men, then settles in a teak tree.
”Wake up,” it calls again. After one hour of yoga Urban Experience
someone rings the bell for a second time and the l No knowledge of HIV, STD, safe sex.
community shuffles towards the Mandir many on l Diagnosed with TB and HIV infection
crutches or driven by wheelchairs, hungry for some
l Infected family with HIV
morning devotion. The sound of drums and cymbals, a
l Stigmatized and rejected by family due to HIV
lot of coughing too, then the drongo calls out again:
“Karuna, compassion.
Ashram Intervention
Girish's face is as if hewn from marble, straight lines, blind eyes in carved out sockets, prominent chin jutting l Has found acceptance as well as his own place in a community at Sewa Ashram
out. His gaze intensely staring towards something I do not see, he recounts his history. Girish is 44 years old l Able to use his yoga and massage skills to positively impact the lives of those around him.
and comes out of a family of civil servants. His father was a senior official in the land department. They were l Motivated to learn Braille and to teach others.
not poor. By the time Girish finished eighth standard he left school, family and the state of Uttaranchal for a
more exciting life in Delhi. He found a job with an electrician and served as an apprentice for one year. Then Medical Summary
he moved to Mumbai, city of his dreams. Mumbai had a lot to offer for a strong young man of eighteen. Girish l Age: 44
found employment at an oil company, a steady job with good income. Determined to make it, he climbed the
l HIV Transmission Route: Unprotected sex with professional sex workers
ladder first by washing the company buses, then cleaning tankers. Since he found favour with his boss, he
l Diagnosis: HIV with Pulmonary TB.
was allowed to drive a car. His boss started relying a great deal on Girish and sent him out on various errands.
One of those errands was the procurement of prostitutes for the lavish parties the company honcho's held in l Prognosis: Good. Long-term resident of Sewa Ashram who is fully compliant with ART and TB
farmhouses in the green belt near the city. Girish's discretion was valued by his superiors. The young man treatment
would fill their glasses to the brim with whiskey, light their cigars and shuffle decks of cards, while observing
all that was done, and then he would follow their example by spending the nights in the brothels of Mumbai.
When Girish was 23 years old he followed the conventions of society and married.Two children were born, he
loved his wife, kept his job at the oil company and kept procuring girls for his superiors: he knew the brothels
inside out.
1998. It started with a fever and pain behind his eyes. Malaria drugs brought no relief, the pain and fever
continued. At a local hospital he was diagnosed HIV+ and pulmonary tuberculosis. The hospital advised him
to also screen his family; the wife and daughter were found to be HIV+ too, the small boy however was spared
this verdict. Girish's eyesight became dim, as if a sudden darkness cast a spell upon his life. His world
collapsed. Gone were the wild nights, the superb whiskey, gone was the daylight in his eyes. As a blind man
ticking with his stick, he brought his wife and children to his ancestral village, seeking support from his family.
When he arrived, led by the hand of his small daughter, the village became alarmed, his family firmly closed
the door and their ears to the pleas of the blind father. No amount of explanation would do, HIV is dangerous:
do not come near. Cursed and abandoned he left wife and children behind and returned to Delhi looking for
a cure, a blind man searching. A year later, his wife died and his brother brought Girish's children to an AIDS
care centre in Delhi. Girish himself was also lucky to find such a centre. Some stability returned to his life,
although he had lost his sight he had not lost that inner strength, In silence he practised Hatha Yoga, shutting
off the wrong desires, seeing the self in the self, blind but seeing. I look at his rock-like face, at his eyes that
seem to see more than mine. During the two years he lived in our community I have been impressed by his
determination to get around as one who sees. He finds his way in Delhi, occasionally visits his children in
another rehabilitation centre taking some presents along. At the Ashram he is the stoic worker giving
massages to stiff-limbed old men, physiotherapy to the amputees, and leads lengthy yoga practices
50 51
VIJAY PAL
Before disappearing into one of Guwahati's32 Today, Vijay works in the kitchen at the Ashram. His TB treatment is completed, though his lungs are
alley-ways he looked back one more time, the damaged and might never work properly again. His CD4 count is above the 200 mark, so no ARV drugs are
last thing he saw was his father raising his fist supplied to him yet; such are the rules concerning the free supply of Anti Retro Viral drugs. I ask him what he
once again. Vijay Pal couldn't stand the feels about the future. Any plans? “I want to live with you,” he says,“Let me serve here at the Ashram, so I may
pressure any longer, the constant beatings and learn how to live.”Vijay is welcome. Outside he wouldn't make it, outside it would spell“Death” .
verbal abuse. He ran away from home. Out of
Background / Root Causes
breath he arrived at the railway station and
l Alcoholic and abusive father
jumped the train to Delhi. Seated on the floor,
l No education
next to the toilet, he stared at the passing
l Run away to Delhi
landscape and dreamed about Delhi. Would it
be like he once saw in a movie? Grand avenues
Delhi Experience
covered by majestic trees, palaces amidst lush
l Worked as a sweet cook
parks, wealth and glamour, freedom at last?
l Exploited by his employer
The nearer the train came to Delhi, the greater the distance between Vijay and his fellow travellers. Some
l Alcohol and drugs are a cheap escape from reality
well-dressed men, golden rings flashing, bit angry words towards him, someone kicked him from behind; the
train entered Delhi's suburbs, with a screeching halt, pushing and shoving, migrants spill out of the l NGO supplies syringes and substitute drugs under needle exchange and substitution therapy
compartment to be almost trampled by a throng of people rushing towards the exit. Everyone in this city but messages about HIV and safe injecting not effectively conveyed
seemed to be in a hurry. His belongings in a plastic bag, he squinted into the sun seeking where to go. l Same NGO has DOTS program but doesn't detect his TB
After some days spent in traversing the city, he found a job as a sweet cook, stirring huge kettles with boiling Ashram Intervention
oil from morning 'til late night. After two months of slaving away without payment he approached his l Found by Sewa Ashram, diagnosed with TB and HIV infection.
employer who merely shooed him away. Vijay Pal, a twenty-two year old migrant from Assam, had no rights l Taken into an environment where he is protected, cared for and loved
in this city; exploitation was common. Disillusioned he joined others like him, queuing up before a liquor
store, the illicit stuff was very cheap, it knocked one out. In the night they lay down on curbs in the middle of Medical Summary
the road, the exhaust gasses repelling mosquitoes, a soft breeze cooling their limbs. In his dreams he saw his l Age: 29
father screaming at him, a toothless betel-leaf farmer, he saw the school he never entered, he saw the l HIV Transmission Route: Injecting drug use / shared needles
disappointment in his mother's eyes, the sun rising above the Assamese mountains. He would wake up with l Diagnosis: Pulmonary TB and HIV, bilateral extensive infiltrative lesions of the lung implicating TB.
a heavy pain in his heart until his friends took him along for some more adventures. In the shadow of a bridge Oral Candidiasis. CD4 is under control so ART is not indicated.
someone gave him his first injection; all pain and fatigue melts away, a warm feeling in his belly and veins l Prognosis: Fair. Unable to do heavy labour, less than 50 percent lung function. Prone to recurrent
spread an unknown pleasure, then he slept again; dreamless. lung infections
Six years later Vijay knew his way around in Delhi. He was a client of a local NGO which supplied sterile
syringes and substitute drugs. Illegal pharmacies which thrive in the area supplied him with vials of
Diazepam, Avil and Norphine for pick-pocket prices. The cocktail he makes of this is topped off with a
crushed tablet of Tidigesic or Adnok33 supplied for free as a substitute drug and crushed into powder on
request with a pestle and mortar.
Neither instructions on how to inject nor counselling on HIV-awareness was carried out. In some cases even
if counselling was carried out, it was done in an informal manner by untrained staff. The addicts were either
too drug-induced to get the message, or in most cases, too illiterate to understand the concept of the
workings of bacteria or viruses. The system failed. HIV spreads its tentacles among the addicts, instead of
being called to a halt. Screening the clients/addicts for TB is not done, although a DOTS program is available
at the same premises. Testing for HIV is done in some cases, though very seldom is the result given to the
patient. Abscesses go untreated for many months, the veins in the legs develop thrombosis, wounds
become chronic. It is in such conditions that we found Vijay breathless, his lungs extremely congested, his
body emaciated.Test-results showed extensive tuberculosis and HIV-infection.
32 In Assam
33 Norphine, Tidigesic and Adnok are common names for
buprenorphine, a medication used to treat narcotic dependency 52 53
NEETU
Everything was always so dark, their little house and the dung on his head to the manure-pile. Neetu begged for release, but the farmer was adamant; Neetu was
courtyard embedded in a solid black cloud, with no his property now. After weeks of exploitation, he escaped from the farm, more dead than alive, and reached
difference between day and night. The walls and ceiling Delhi, where he tried to survive on scraps of food handed out at a temple. When the sun reached its zenith
painted by smoke, piles of charcoal for sale, lumps of and her flames consume those without a home, he took the bus to our Ashram, returning after 5 months. I
wood stacked up for burning, little brother playing went through the wad of papers I find in his pocket, different papers with different names, some are his. One
amidst the ashes. His father's red veined eyes stood out of them the result of an HIV test,“Positive”it reads. I ask him if he understands what it means.“Yes,”he answers,
against the black soot-covered face, sweat poured down he heard about it on the radio, sometimes TV too. Yes, he slept with girls, love for thirty rupees only. He closes
his tawny arms. All of a sudden, in the light of the fire, his his eyes under my searching gaze, then looks up, tears brim over “Life is like being eaten by crows,” he says,
hands would reach for his throat, convulsively he bent “They pick the flesh from your bones while you're still alive.”
over, struggling for breath, almost suffocating, he would
wait for a few minutes, leaning on his shovel, then Background / Root Causes
resume work again. Mother was as black as Father, in a l Polluted home environment results in both parents dying prematurely, likely from
corner she moved around like a crab, gathering coals, making piles, chopping wood. The smoke irritated pneumoconiosis (Coal Workers Disease)
Neetu's eyes, his throat, his breathing was fast and short; a defective little pump inhaling toxic gases. His belly l Health undermined from birth.
was swollen like a balloon, appetite had left him, he always had a cold and a rattle in his lungs. Sometimes he
l Child labour
went out in the fields, to scavenge around for some crippled wood. He liked being outside, though his
l Orphaned
mother would always call out; work was never done.
He learned the trade of charcoal burning from his Father who relied more and more on Neetu while his Delhi Experience
strength was diminishing. Kneeling, bent over on his cot he held his head between his hands, the muscles on l Migrant from rural area to Delhi
the sides of his neck tense from the extremely laborious breathing. After some months of intense suffering l Worked in a cloth factory sewing ladies fancy clothing
the reflection of burning embers slowly died in his wide open questioning eyes. Two years later Neetu's l Utilisation of healthcare is limited; continual health problems are not deemed 'serious' as
mother joins his father, from darkness to light. The tiny hand of his brother in his, they lit the funeral pyre, in a sickness is perceived to be normal
flame she went. Together they stare into the fire till the body has turned into ashes, white flakes in the wind,
l Late diagnosis of TB
then they stand up, walk home and resume their labour, orphaned. After another two years of slaving away
l Illiteracy and lack of practical knowledge inhibit good decision making, including defaulting
above fire and coals, his small brother, now ten, was deemed old enough to take care of himself. Sick of the
soot, smoke and fire Neetu left that hell and the backward state of Bihar for another illusion: Delhi, money, once TB treatment was started
rupees.The promise of money and freedom to be bought is what gave a sense of direction, affirmation, value l Admitted to Government TB hospital where substandard care was provided in unhealthy
to his life. For two thousand rupees a young man bends his back in a factory twelve hours a day, six days a environment with no counselling on importance of completing treatment.
week, sharing a simple room with a couple of guys. The young men have no rights, or access to good
healthcare. Nevertheless, they comb their hair and climb the cinema stairs for just another illusion. Ashram Intervention
l Educated about TB and HIV at Sewa Ashram with living examples within the community
Neetu takes pride in the fact that he sewed certain patterns on ladies' fancy clothing- he is a designer he tells l Daily medication, nutritious food, and peaceful environment
me, his eyes light up, “A designer.” Neetu however, was unaware that his physical constitution was
undermined since birth. He had never taken notice of the fever and cough that had accompanied him since Medical Summary
he was a baby. Everybody coughed and had fever: his father, mother, everyone he knew, nothing to be l Age: 19
alarmed about. Until he started to cough blood, then he knew it was serious. l HIV Transmission Route: Unprotected sex with sex workers
The boys in his room told him to go to a hospital. Neetu was admitted to the government tuberculosis l Diagnosis: HIV and TB
hospital in Delhi. Mangy dogs lie around the filthy corridors, rats scurry away before our feet, in corners lie l Prognosis: Good. Responding to TB treatment
piles of dried chapattis34, half empty glass bottles used for lung-drainage, some syringes, cigarette-butts, and
filthy bandages. The walls are stained red from the spitting of gutka35 and chewing tobacco, the poor man's
drugs. Climbing the identical staircases was like ascending a labyrinth of grime. The same stained walls, the
same desolate corridors, the same dogs, and the same uninviting doorways led you further into this
labyrinth of sadness, into big halls lined with rows of rusty beds disappearing in shadow, into darkness.
Neetu survived the twenty-eight days in this inhumane institution, before he was brought to Sewa Ashram.
After three months he suddenly disappeared. Seduced by the promise of rupees, he went along with a
stranger who sold him to a farmer. The farmer, an incredible bully, forced Neetu to clean stables and to carry
34 Indian bread
35 A mild stimulant preparation of crushed betel nut, tobacco, and sweet
or savory flavorings used like chewing tobacco.
54 55
ILIYAS
I thumbed through Iliyas's hospital file and saw that all the papers, He never touched a woman again, he became estranged from his own body, regarding it as filth. Then, one
reports and tests were labeled with the ominous black BIOHAZARD36 day he felt his upper legs swell up. He dragged himself to a government hospital where they immediately
logo. You couldn't miss it. Everything was stamped with this strange admitted him and surgically removed the pus from the abscesses that had grown near his lymph nodes.
circular design. I looked into his questioning eyes and thought I even
saw the mark on his forehead, like a modern day leper with a mark It has been three years now, but his body still carries the scars, the wounds are still not healed. He supports
instead of a bell to keep others at a distance. That sums it up, the himself with a crutch. He dragged himself around, sleeping among the tombs of Sufi saints. HIV, this dreaded
history of a young man's illness: HIV. Biohazard? Iliyas, 33 years old, disease had reduced Iliyas to an out-cast, an untouchable. However, the untouchables have their grapevine
from Karnataka in South India. His parents were caring but poor, both .
too. Someone said “Sewa Ashram”“Ton baba,” another advised him, one who was somewhat more literate
served as cleaners, sweeping the houses of the rich. provided him with the address. Iliyas arrived at the Ashram, he hung on his crutch and started to cry.
They managed to place him and his siblings in school. Iliyas was the Iliyas is currently admitted to a good reputed private hospital. There are some complicated infections in his
eldest in the family. His parents' expectation on him was high. His body. His fever pattern leaps and falls up and down, his mood swings in the same direction, from elated with
parents slaved away to provide food and education to the children. hope to depressed and beaten.
When times were very hard they would plead with the uncle, a
government servant who was comparatively well off. Though the Again I flick the pages of his medical file, BIOHAZARD they scream. I'm happy Iliyas does not know the
uncle was usually lenient, he was at times strict. meaning of this logo, but I also wonder how this will influence those that are meant to take care of him. How
do young inexperienced nurses respond to Iliyas who is, according to the doctors, a biohazard? Don't touch
When Iliyas was twelve years old, his father and mother became too weak to work. It was time for Iliyas to the untouchable! I kiss Iliyas and I kiss him once more.
bring in the money. Iliyas ran all kinds of errands for his uncle while continuing school. When he was fifteen,
his uncle helped Iliyas to acquire a driving license and then introduced him, as driver, to some of his friends Background / Root Causes
who were government servants, property dealers, builders – people who were rich men in the eyes of the l Grew up in a poor, but loving family
poor. The gullible boy, innocent until then, soon discovered the seamy side underlying the activities of l Educated to 10th grade standard
government babus37 and their friends: late night parties, shady deals, and women, of course, lots of them. l No awareness of HIV risk in having unprotected sex outside of marriage
Iliyas shared in their pleasures.
l HIV diagnosis given harshly resulting in shame, stigma, and exile from family and community
Eighteen years was deemed a good age to marry. Iliyas's bride was only seventeen. According to the
traditions and expectations of their community the two were wedded to one another under Muslim law. Delhi Experience
According to the same traditions, a baby was expected in nine months. The uncle, administrator that he was, l Came to Delhi to escape the stigma of HIV diagnosis
made a mental note of the date a son might be born. Ten months later, no crying of a new born babe was l Lived as a beggar until health deteriorated
heard, the uncle checked his calendar once more. Two years later, still no child, the wife upset, crying for a
baby, the uncle grumbling“such a waste of money.” Ashram Intervention
l Medical care provided, including admission to the private hospital
SEX was written in big bold black letters on the sign board of the local specialist in fertility, venereal diseases, l Counselling provided on HIV status
sex-determination, ultra-sounds, etc. The bearded doctor performed some blood-tests on the couple and
l Love, care and acceptance in community
asked them to return in a week for the results. Seven days later they entered the clinic again, nervous, both
their hearts beating like a drum. The doctor took off his glasses and started fuming at Iliyas; “What kind of Medical Summary
man are you? What the devil do you do when your wife is not around? You have a dreaded disease, infectious,
l Age: 33
incurable.” The doctor was rather direct and told Iliyas in a most disgusting manner how HIV is transmitted
and why condoms are important. The uncle was also duly informed, it was then his turn to shout at Iliyas, l HIV Transmission Route: sexual
calling him names. Iliyas's wife, miraculously, was found to be HIV negative. God had spoken, Inshallah. Iliyas l Diagnosis: HIV with chest infection, suspected pneumonia or TB. Test results pending.
was told to leave - leave his wife, his house, his village, no forgiveness for this sinner marked by evil. l Prognosis: Undetermined
Iliyas arrived in Delhi at Nizamuddin railway station, near the heart of the ancient Muslim quarter. The call to
prayer, sung from the many minarets, guided him toward a crowded mosque. Hundreds of beggars were
squatting in orderly rows.The beggars received food-coupons from the volunteers in the mosque.They were
then given food in the local restaurants situated opposite of the mosque. The bill for the food was paid by a
Muslim charitable organization. Iliyas became a beggar among the many, together, yet so alone. The stigma
he carried was not something to be shared with others. In exile he hid himself in shame, strong liquor
somewhat easing the pain.
36 a biological agent who constitutes a threat to humans, a potential danger, risk, harm
37 Bureaucrats
56 57
OBSERVATIONS
There are many factors that lead to individual destitution. A child born into an impoverished family in a rural illiterate population before they engage in risky behaviour. These communication campaigns are typically
village may have little chance of proper nourishment during their critical developmental years, stunting existing only in central areas and do not reach the peripheral areas. HIV prevention and safe sex messages
physical growth and mental development. Living in a small crowded hut without proper ventilation and are sometimes heard in red light districts, but seldom among the informal sex workers in other parts of Delhi.
indoor cooking compromises respiratory health from birth. The child's lack of education is often directly Language barriers and illiteracy among the migrant population prevents comprehension of traditional
linked to child labour of economic necessity for the family. Healthcare is often inaccessible, due to physical media, such as pamphlets, posters and billboards.
distance from the nearest provider, or simply not sought due to lack of understanding about health or
fatalistic acceptance of the ubiquity of illness. Families fall apart due to sickness and death. The link between HIV and TB is strong. Among the destitute, we commonly see that TB steals longevity from
its survivors, due to late diagnosis and intervention. People with HIV typically die of complications of TB.
Escape from these hardships and the dream of making money lures millions to India's big cities every year. Among the destitute population, constant vigilance and screening is not done by medical professionals or
Their urban experience varies. Some find jobs, but are grossly underpaid or forced to work in hazardous health workers who come into contact with patients. HIV testing is done inconsistently and sometimes test
environments which compromises their health. Many are exposed to the cheap thrills of readily available results are not even communicated to the patient.
drugs and inexpensive sex workers. Others work hard and succeed for a time, until a health crisis occurs.
Either an accident or contracting TB or HIV leads to their physical decline. Proper counseling is not always completed. Many NGOs have taken on the task of early diagnosis, but their
impact has been nominal among the destitute population.
In spite of existing health infrastructure in Delhi, many people are not receiving even basic care. Many
destitute people do not know that free health care is available to them from government hospitals. Those
that do seek health care are often intimidated by large public health facilities, or they fear discrimination by
the medical professionals. Often destitute people are not allowed admittance to hospitals due to medical
staff unwilling to or simply too busy to help. For those who do find their way to medical care, many are sent
away with a simple prescription for antibiotics, in spite of presenting serious symptoms. A thorough
examination is a rare occurrence, and screening of this vulnerable population for HIV or TB is rarer still. Those
diagnosed with HIV or TB are stigmatized and often denied treatment. Mentally challenged people have
nowhere to go. There is insufficient staffing at government-run hospitals not allowing doctors enough time
to adequately assess their patients.
Outside of the government medical system, various organizations and unscrupulous “doctors” exploit the
illnesses of poor people. Charitable organizations working among this population are not consistently
screening for HIV and TB or effectively counseling about HIV prevention or living with HIV. Some substitute
therapy programs actually result in new users becoming addicts of substitute drugs, as screening and drug
use testing was not be done as part of admission to the program. Opiate pharmaceuticals can easily and
inexpensively be procured from unscrupulous chemists, and are often mixed into cocktails with substitute
drugs. Free needle programs get close enough to the addicts to distribute needles, but safe mode of
injection and HIV transmission messages are not being heard and understood by the often-illiterate users.
Medical assessments of free needle and substitute drug program recipients are not being done, so
abscesses, HIV and TB are undetected and untreated.
For many of the destitute, the national DOTS program has not led to successful TB treatment. Homeless
people, who typically do not have a fixed address, are not able to enroll in the program. For those who do
manage to enroll in the DOTS program, destitute people are often scared away by intimidating paramedical
staff.The three times-a-week medication protocol is often insufficient medication for the typically advanced
TB of the destitute patient. Guidelines of the DOTS systems are widely disregarded by practitioners and
paramedical staff. Even in the government-run TB hospitals, patients are not actually observed taking
medication. Lapsed patients are not followed up by counselors or motivators. Medication is not provided for
multi-drug resistant TB. Co-existing illness in TB patients are often overlooked. Roughly 30% of TB patients
also have lung function derangement, for which they require supportive treatment.There is no provision for
this additional treatment in DOTS.
Much of the burden of disease that afflicts urban destitute people is preventable or easily treated if
diagnosed promptly. HIV education and prevention messages are not effectively reaching the migrant and
58 59
RECOMMENDATIONS
As these personal histories reveal, many challenges remain in addressing the health needs of the destitute in Outreach at local TB Hospital
Delhi, particularly in relation to HIV and TB.The following recommendations are offered as a starting point.
Additionally, we have an outreach program to Rajan Babu Tuberculosis Hospital (RBTB) in Delhi. This large
Community facility has many destitute patients who are undergoing the intensive phase of TB treatment, but have no
one to care for them. One of our social workers daily visits them in the hospital. They ensure medicines are
Caring for the destitute person's immediate medical needs is just the first step in a personal transformation taken, provide food, clothing, and personal care.These patients will often come to Sewa Ashram to complete
process that includes physical, social, and vocational rehabilitation. This process requires time, and a their TB treatment once they are discharged from RBTB hospital after completing their two month intensive
supportive environment and long-term relationships. Membership in a community where human dignity is phase of treatment.
restored and every person is valued and seen as having something important to contribute is key to igniting
the spark of hope in each individual. Rationalization of the National DOTS program
Perhaps more than anything else, destitute people need community. Their needs are not confined to To effectively treat TB among the destitute, the existing DOTS program needs to have added flexibility to
medical treatment, then discharge. They need somewhere to rehabilitate, to live. They are in too weak a state adapt best practices and new ideas. Private physicians and NGOs should be incorporated into the DOTS
to survive on the streets of Delhi, too weak to avoid old habits. They need education, vocational skills and program on a larger scale.The treatment protocol needs to account for differing medication needs based on
,
economic opportunity. They need to be empowered to “live” not just to survive. A healthy lifestyle with good the severity of illness. Counselors and Motivators working in DOTS need to be inspired or given incentive to
hygiene, food safety, good nutrition, and caring for one's health needs to be modeled and experienced aggressively pursue defaulters and held accountable for those in their care. Regular patient assessments
before it can be adopted. should be done by a physician to manage the secondary illnesses associated with TB. Screening programs
among vulnerable populations should be a higher priority, and HIV screening could be done at the same
As Sewa Ashram expands, we are shifting our treatment approach. Understanding the need to be close to time. Upon completion of therapy, a final chest x-ray should be taken to confirm that the treatment was
where the destitute live, we hope to open a small clinical facility in Delhi, among the community we serve in successful and additional follow up done after 3 months to reduce chance of relapse. The program currently
Yamuna Bazaar. This clinic will provide medical care for new patients and increased opportunities for lacks any provision for treatment of multi-drug resistant TB.
screening of HIV and TB among the wider population. It will also enable us to have a consistent presence in
the area, which is vital to building trust and long-term relationships with the people we serve. Patients leave ART among the Destitute
Sewa Ashram before their treatment is completed for a variety of reasons. By being resident in the
community they often return to, we hope to find TB treatment defaulters more quickly and continue In treating HIV, we typically don't start our patients on anti-retroviral therapy. Destitute people, usually with
treatment for patients who no longer live at Sewa Ashram. very limited education and understanding of disease need to go through a learning process, which typically
takes years. First, they need to understand what HIV is and what this means for them. A simple explanation of
Secondly, we envision creating a village outside of Delhi, where vocational training and various economic their diagnosis and its implications often needs to be repeated many, many times before understanding
opportunities could be carried out for those patients ready to try to build a new life for themselves. This occurs. When there is a need to take ART, we need to be sure that patient is in a social, mental, and economic
model will essentially restore people who have been broken by their urban experience back to the position that they can take it for the rest of their life.
traditional social structure of village life.This village–like community will continue to share the ethos of Sewa
Ashram: that of caring for each other, seeing and responding to human need around us, and working Delivering Basic Healthcare
together in a community.
Many of the health issues seen among destitute people could have been prevented or treated
TB Treatment Approach at Sewa Ashram inexpensively if properly detected at an early stage. A network of small community health centers located
near homeless and destitute people and in slum communities could be an important first line for early
In treating TB, we divert slightly from the national DOTS program recommendations which calls for medicine detection of HIV and TB. These small clinics or health centers could also serve as an important center for
three days a week. We provide daily medication with nutritious food and a peaceful environment that education of vital public health messages.
provides rest for the patients. Because so many of our patients are severely undernourished, diagnosed late,
often with multi-system TB and secondary diseases, we have found that daily treatment is more effective. A franchised model of healthcare could be utilized to provide economic incentive to health professionals to
Patients are also more confident of the treatment when they are getting daily medication. Additionally, we work in this challenging environment, utilize economies of scale in procurement and distribution, and to
closely monitor patient progress with monthly sputum tests and lung x-rays during the initial intensive quickly scale up an extensive network that reaches the most vulnerable population.
phase of treatment. The same tests are done every two months during the maintenance phase of treatment.
Based on previous exposure, past defaults, associated HIV, and how long it has taken for the patient to come A similar type of intervention in rural areas could be used to provide improved access to healthcare to help
from initiation of treatment up to symptom relief, we may extend the period of treatment beyond the prevent the illness and death that is often a contributing factor in migration to the city. These centers could
typically recommended six months to nine months. Finally, we have a pulmonary rehabilitation program to also provide a local public health education element, teaching the importance of clean water, proper
improve lung function. These simple exercises have been merged with daily yoga sessions to improve lung hygiene, and detecting and addressing rampant undernourishment in children.
function in our TB patients.
Increasing Effectiveness of Public Health Messages
Many of the current public health messages are missing the very people who most need to hear them. We
60 61
need a burst of creativity to effectively reach the most vulnerable population. Messages must be prepared in
the vernacular language of the streets, in the languages of the migrant populations, using radio, drama, and
other forms of media. Ethnomusicologists and songwriters must spend time with this population and
prepare jingles that people will understand and remember. Community radio stations focused on
vulnerable populations need to be set up, using radio as a way to disseminate life-saving messages about
safe sex, condom usage, HIV transmission, and the importance of TB and HIV screening. Positive role models
and the example of peers who have broken the destructive cycle of their addictive lifestyle should be the
ones to reinforce the importance of good lifestyle decisions, and to counsel on what living with HIV means.
Inspiring Compassion among Medical Professionals
Too often the healthcare of a destitute person is compromised by the uncaring response of a medical
professional. We need to seek ways to inspire the health community to true compassion for those who most
urgently need their help. Continuing education for health professionals to sensitize them to the needs of the
destitute, to recognize discriminatory behavior in themselves and their colleagues and honest enforcement
of anti-discrimination policies are all needed.
As part of a “Journey to Greatness” initiative, Unilever required their management trainees to do three weeks
of service at various charitable organizations. Those who served at Sewa Ashram described their experience
as life-changing, as they learned to see destitute people as people just like themselves. Their time working
among the poor humanized them and made them better managers. Imagine what effect mandatory service
for the poor, as a part of medical training, would have on a new generation of medical professionals.
Addressing Root Causes
I read a very clarifying article in The Hindu newspaper: “Today, hunger and deprivation affect about 260
million people in the country. India is home to 40 per cent of the world's underweight children. Iron
deficiency anaemia is estimated to affect 75 per cent of children under the age of five; 57 per cent in the
same group suffer from vitamin A deficiency. Under-nutrition in women of reproductive age contributes
significantly to child hunger. Consequently 30 per cent of babies weigh less then 2.5 kg at birth leading to
multiple handicaps in later life, including cognitive ability.”This is what lies at the root of all these stories, or
case studies, if you like. Without taking these numbers in consideration and without addressing the root-
causes of the spread of HIV/TB among the poor, we merely dress the wounds caused by the crushing wheel
of injustice. Like Bonhoeffer said: we have, instead, to throw a spoke into the wheel itself to prevent it from
crushing the poor, the small farmer, the labourer, the little boy who serves you chai.
It is our earnest hope that these profiles inspire a greater sensitivity to the challenges faced by those who are
sick, destitute, and homeless. Sewa Ashram is just one of many organizations and individuals working to
improve the lives of destitute people in Delhi. Together, let's seek solutions that honestly face the issues of
discrimination, inaccessible healthcare, and the root causes of poverty.
Thank you for reading the stories of our patients.
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