By Michele Leight
Whatever else might be on the agenda, World AIDS Day, December 1, is important to me. I pause in the midst of the usual chaos that a busy life generates, sit myself down, and write about the year that has passed. Although it might seem from the website that not much has been going on, appearances can be deceptive.
What an extraordinary year it has been! I have finally written a book, called "Harvest of Innocence," which is available for purchase on www.amazon.com (ISBN 1-4196-4636-2) and at www.ashraya-ny.com.
The book was inspired by young volunteers, who brought their time, energy, and big hearts to Ashraya-New York because they wanted to reach out to their New York community. They knew about the AIDS pandemic and Americans at risk, and it really bothered them. When we talked with people in our own community, the enormity of this pandemic hit home and we made a short film last year. There isn't a corner of the world untouched by AIDS today. Those bright, energetic teenagers left for college last fall, and my world went relatively quiet. In the months that followed, I continued to interview people about poverty, health insurance, predators, risky behavior, health education, gender iniquities, AIDS, Hepatitis C and other diseases. I began to write about them in my spare time.
At a certain point I knew I had taken on a huge commitment - because I felt that those who shared the most difficult and painful stories about the loss of loved ones wanted me to find some way of documenting them, to help others. That would make some sense of the loss, and in a way turn it into something positive - that these innocent lives were not lost in vain. Others wanted me to share success stories, of reversing ill health, to inspire others to seek treatment, instead of giving up and risking their health, or even dying. I realized that they had brought me their stories for a reason. I gave my word to a father who lost his daughter that I would do something with his testimonial, because he really wanted other young women and girls to be spared her fate. I had to live up to my promise, I just did not know how. Their hope was a huge motivation for me, so I just kept writing and trusted that there would be a way to share their stories.
A major influence on the focus of the book has been my childhood friend Nafisa Ali, a former Ms. India, photographer, popular movie star, Chairperson of Action India (Trust), activist, and now President of The Children's Film Society of India, who has featured prominently on this website from the day it was founded. When I saw the work she was doing in New Delhi, India, it made me think about creating a website to raise awareness for health, AIDS and poverty. Nafisa gave me some photographs several years ago that imprinted themselves on my memory. I just cannot forget them, they come back to me time and again.
I remember the day well. It was 2000, I boarded a plane in New Delhi, India, bound for New York, my home. When I was airborne I found the photographs in my bag in a envelope amidst other documents relating to Nafisa's NGO, Action India (Trust), that she had given me. A hastily written note from Nafisa explained that the state of disintegration of the woman in the photographs was because she did not have anti-retroviral medications to treat AIDS.
As I have said, the physical result of this was so unbelievable I could barely look at the photographs - and I have seen really disturbing images in my life. This was not a woman ravaged by war or weapons, but a virus - for which stabilizing medications exist. It was possible to prevent her suffering, but instead she died a lingering death of unimaginable discomfort. Until I saw these pictures I did not know what the HIV/AIDS virus could do without stabilizing medications. Which is why raising awareness is so important. Nafisa brought me face to face with the tragedy this virus causes millions across the globe every single day with a few photographs.
These past few years the photographs have made me think of all those at similar risk - girls, women and young boys - who are sexually abused; girls who are pressured into prositution in Latin America, Eastern Europe, Africa, India, who have absolutely no information about the disease and therefore no means of protecting themselves. I think about young girls and women who are forced or sold into the sex industry, hunted daily by dangerous diseases, waiting to strike.
The subject of the photographs Nafisa had given me was a woman with AIDS - an Indian prostitute - who somehow found Nafisa from her isolated room and asked her to take photographs of what AIDS had done to her. The remarkable thing about her is that she did this in the final days of her life. She was bed-ridden - her physical condition is impossible to describe in full. Briefly, common bedsores turned into craters, like Swiss cheese, exposing inner organs, and she had tubercolosis. Without ARV medications, her body was unable to fight even the slightest infection - like a bedsore. Walking was out of the question. Her only connection to the outside world was her sister. Yet somehow, from this seemingly desperate situation, she managed to find Nafisa. She wanted Nafisa to photograph - document - her physical condition.
Those who love documentary photography and film know how powerful such imagery can be. Perhaps the woman intuitively grasped this, even though she could never have experienced the joy of owning a camera and taking pictures herself. But she knew from the magazines and newspaper reports that Nafisa is a keen photographer, a love she interited from her father, who is a well-known professional photographer.
There were many reasons why the woman with AIDS came to such a state, but essentially it was because she was forced through poverty to become a prostitute. She could no longer work when she became infected with AIDS, and she could not afford anti-retroviral medications. Her sister was too poor to afford them. She was discriminated against because of the stigma and denial surrounding AIDS - and prostitution: in her case a double whammy. She was an outcast.
But this woman was not looking for pity - instead, she wanted to warn others, to spare them her fate. Her rejection by the community was of great concern to Nafisa from the first day she raised the subject of AIDS to me. Stigma and discrimination are continuing all over the world today, and are causing the disease to spread.
Like the woman in the photographs, I found many people wanted to share their stories so that others might be spared what they had gone through. They were predominantly Americans, but with family and connections across the world. The number of times health insurance came up in the interviews was astounding. "I didn't know" came up over and over again in the context of diseases like AIDS and Hepatitis C among educated people. Most people in the world are poor and uneducated, and they are stalked by diseases that endanger their health every day, especially females. "Not knowing" has even greater implications for them because of the possibility of infectious diseases, without the financial stability to treat them. Health insurance is a dream for most of the world, who live below the poverty line.
What is the book about? Here is the back text "blurb:"
"Risky behavior is almost a rite of passage. Every generation has taken risks with sex, drugs and alcohol, but there has never been the variety of deadly substances and diseases in the mix as there are now.
Over 68 billion dollars worth of heroin, crystal meth, cocaine and mirijuana enter the US annually through the Southern border alone, targeting primarily American youth. Internet predators spend months baiting minors online, with the goal of trapping them into having illicit sex.
Risks exist at the individual, community, national and global level - how well we are prepared to tackle or prevent them is what counts. Misinformation and lack of education, or preparedness, about the dangers have the same effect - they jeopardize health. Globally, poverty and gender inequalities are fostering disease, blatant abuse and trafficking in women and children for labor and the sex industry.
Millions of children, teenagers and adults across the globe, including America, are unaware of the consequences of drug abuse and risky sexual behavior.T he cost to society is astronomical: healthcare costs have risen 97 percent in the US since 1998, and 46 million Americans do not have health insurance.
Some of the true stories in the book contain personal accounts by those who are coping with, and fighting, the risks, and two parents share painful stories of young daughters who did not make it. There are also hopeful insights by the young and people of all ages, who stress the power of health education at every stage of life.
Whether you are a teenager, dating, single, married or a parent, these true stories are a wake-up call to guard your health, and to protect those who might be at risk around you."
Preventing destructive forces from ruining health needs far more focus than it is getting now - in America, and across the world. I think about the photographs Nafisa gave me often, because for me they represent suffering that might have been prevented. That is the good part - diseases that cause such misery today are preventable. They are not inevitable - and even if infection is the result, the medications exist to stabilize them so that people do not end up in the state of degradation of the woman in those photographs. However, injustice does not go away if we hear, see or read something disturbing and then brush it aside, or forget about it.
In the past few years I have explored some of the most disturbing subject matter in the world. I could not have ventured into such territory without the support of the arts, my personal and professional lifeline. It is hard to accept that human beings choose to do the things they do to each other - and with such barbarism. When it was too much to bear, the arts strengthened me, calmed me down, and helped me re-enter the fray. This incredible journey - so far off my familiar path - has led me into the world of predators, child and adult sexual abuse, gender inequities that cause terrible harm, the stigma and discrimination surrounding AIDS, human trafficking of young children and teenagers for the sex trade, forced labor, grinding exploitation for profit and many other issues related to poverty.
What became clear to me is that so many of these issues intersect with AIDS, and other dangerous diseases. When a human being is not free, with some degree of financial independence and stability, he or she can be misused and violated in ways that result in deadly diseases like AIDS. For the poor, the violation is essentially a death sentence by disease if the person has no hope of affording medications. I am grateful for what I have learned, because it has made me much more aware of those who suffer most in the treacherous imbalance between rich and poor societies, and also those who fall out of the loop in rich nations like our own, or rapidly progressing countries like India, where the poor are in danger of being left behind, forgotten.
The title of this book "Harvest of Innocence" is not my own; it was generously loaned to me by Peter Landesman, who wrote about "the harvest is innocence" when he described sex slavery of young girls in a story he wrote for The New York Times Magazine. When I read that sentence something happened to me. It was as if someone flipped a switch - I just sprung into action. I called The New York Times, explained how much I loved that sentence of Peter's, and asked if I could use it for the title of my book. They kindly connected me to Peter - who said "sure," via email, without any hesitation. This generosity of spirit from all quarters has made the book possible, and I am deeply grateful to Peter for the title, and to all those who have shared whatever they can with such encouragement.
Anyone who has read data on global prostitution and sex trafficking will know that using protection is generally not part of the deal in underground sex rings and clandestine sex with minors; they are not popular in the poorer brothels of the world where men will go elsewhere if a prostitute asks the client to use protection. Few adults who violate minors in the silence of their own homes are going to pause to worry about using protection. Secretive, illicit sex within families is a widespread phenomenon, but most prevalent in developing nations. Abuse flourishes if we remain silent. Silence gives permission to the abusers to continue.
The risks of all kinds of infection only increase a hundred fold for the poorest prostitutes or sex slaves, when multiple partners are serviced daily, and choice is not an option - at its worst, it is slavery and assault with deadly diseases. That might sound harsh, but it is the truth. In the higher echelons of the sex industry, prostitutes can and do demand the use of protection, but this is not foolproof either, and these women service many clients a week. The book contains unbelievable true stories of infections that should never have hit their mark - but they did, on the first sexual encounter. These are really important stories for people of all ages and backgrounds to read. This can happen to anyone, including married men and women. Globally, married and faithful women have been hit hardest by AIDS, for reasons that are too numerous to list here. They are documented, with statistics, in the book, and they back up the true stories.
The worst tragedies begin with poverty - the empty stomach - the scourge that spins off a hundred atrocities and doles out degradation in the lives of those who are most vulnerable to exploitation, abuse and disease - especially females. The prostitute and her "work" is perhaps the most despised symbol in the world, and in a very literal way the images in those photographs Nafisa gave me represent what society is willing to do to women who are forced to sell their bodies, while leaving the men who use them virtually free from reproach or censure. I do not consider involunary prostitution acceptable work for any female - or male. If it is a question of having sex with men for money or starving, I suspect many people would crack by the first week without food in their stomachs. There are people who are forced to endure months of borderline starvation, which increases the risk for female family members who have a commodity to offer that never goes out of style - their bodies. There must be some hope of feeding these families and endangered women some other way. Most often they give in to prostitution to feed their kids, because if they don't they will starve.
Instead of getting bogged down by negative thoughts, however, I like to think of what might come of the new prosperity in nations like India, and China, and the thriving businesses, corporations and entrepreneurs who might help change the status quo for their own people who have not yet experienced even the satisfaction of a full stomach on a daily basis. I do not believe their lives can be turned around simply by doling out charity, unless the person is beyond any other kind of assistance. Handouts and charity are not long-lasting. They do not end poverty even though they are wonderful acts of kindness. Ultimately, there is no dignity in a hand-out. Every poor person I have ever spoken with has said they long for a job or a small loan (without punitive interest) to start some small enterprise of their own.
Jobs, or small individual enterprises like growing vegetables, tailoring clothes, making kites or clay pots, or farming land, offer dignity and a sense of purpose. Most Indians, Latin Americans and Africans live in rural areas, where small grass roots businesses can flourish with a small loan or help from local businessmen, or both. This also means that men and women would not be forced to leave their villages for months on end to seek work in large towns and cities - where the men often console themselves with prostitutes, because they are leading an unnatural life and they buckle under the pressure. Seeing a wife twice or four times a year is too much deprivation for most men to bear, with lethal health repercussions for the entire family. Earing a wage is essential, and there is little choice if there are no other options. For women who leave rural areas the risks can be so great they may even lose their lives. They have no value if they are poor. This makes working locally, in their own communities, near their families, even more critical.
Everyone wants to be a "contender" - a valued contributor to the family and community. It is human to feel that way and the poor are no different. Unfortunately, many people view the poor as a sub-species - as though their circumstances are entirely their own fault - and they lose no time exploiting them. Many profit off them.
Successful businesses must run as they always have - making a profit for shareholders, they are not charities - but somewhere in this abundance and prosperity across the world there can be a place for new thinking, and new ideas, that carve a small path through the spreadsheets and bottom lines that have the potential to narrow the gap between poverty and prosperity. This needs financial intervention - a business arrangement - that arrives in the nick of time to ease the misery of a farmer who watches his hard work turn to ashes in a failed crop, or rescue a family from starvation so that they do not have to give a child to the brothels. Perhaps the prosperous - the businessmen, the venture capitalists and the corporations - can club together to find some way of making the money available, on loan, or let other innovators put the money to good use.
Micro loans make the wheat grow, the fruit ripen, and children stand proudly in school uniforms for the first time in the lives of previously endangered families. There is certainly enough money around, it is a matter of how it is utilized - and to what purpose. There is a great deal of corruption in nations like India, Latin America and Africa, but its corrosive effect can be by-passed by extending very small loans to those who are most often caught in the vice-like grip of greed and unscrupulous business practices - the poor.
Extending loans to women will help reverse many of the harmful practices that endanger them in developing nations. How many more farmers will appear on Indian TV with tears streaming down their face because their young daughter has been gang raped, or burned because the dowry did not arrive because the rains failed? What will it take to end the deadly practice of giving young girls and women in arranged and bartered marriages to much older men who might have diseases like AIDS, but no one takes this into consideration when the marriage contracts are drawn up. Blood tests are not mandatory prior to marriage in these countries.
What is it called when such contracts result in death by AIDS of a girl who was infected by her philadering husband, or degenerate uncle, and she had no choice in choosing him as her spouse or family member, and absolutely no hope of negotiating safer sex because her place in the family and the community has less value that the cow? It is called unfair and wrong. This is a reality few of us who are emancipated can even imagine. Most people do not want to have to think about such things, especially if they are happening in countries far away; but once in a while it might help to pick up a book and learn about other lives, or ask why the woman next door has bruises and a black eye - in our own community. It is so beneficial to acquaint ourselves with some of the things that are really going on in the world.
I chose to talk to New Yorkers about AIDS because it always gets a reaction from people. AIDS makes many of us turn away because it forces us to confront things we do not want to look at in ourselves - or in our families and communities. No one likes to think they might be bigoted, or prejudiced against people who are not heterosexual. It is not pleasant to confront a pedophile uncle, or a husband who grazes elsewhere. It is a lot easier to protest and protect oneself if there is some degree of financial independence and support from the family and community. When these positive forces are absent, violation and abuse grow. The statistics on new AIDS infections in females in New York are staggering. They mirror the global trend, and often for the same reasons. I have focused on this repeatedly in "Harvest of Innocence," because we delude ourselves that all women in wealthy nations are emancipated. The statistics tell a different story.
Respect for childhood is totally absent in some nations and cultures. The stigma and discrimination that surrounds AIDS at all levels of society is especially dangerous, even for very young kids. They are ostracized, and terribly mistreated. In China, children orphaned by AIDS have to live like lepers on the outskirts of towns and villages if no relative is willing to take them in - no one wants them living nearby or attending the same schools as their kids.
Fear of being excluded - a very real possibility based on community behavior so far - prevents millions seeking treatment for AIDS if they become infected. They hide in secret with their disease because they fear that if they go to a doctor the community will find out. Few people will risk losing the support of their family and community. Awareness for the stabilizing nature of ARV meds and the routine practices that prevent transmission of AIDS are critical to eradicating fear. Education and awareness lag far behind the need for it, despite all the advances we have made medically, technologically and scientifically. It is the way we think about AIDS that is getting in the way - something the teenager volunteers grasped instantly, because they had been so well educated, and prepared, about AIDS and other diseases. Not knowing increases the fear - and the discrimination.
There is corruption at all levels of society that endangers children especially. There are parents in developng nations who sell their kids because they want a better lifestyle, not because they are starving. They are not rich, nor poor; but they decide to have several kids, factoring in that one or two of their progeny will be sold into the sex industry or bonded labor so they can improve their own circumstances. Most often a young girl is given to the brothels or packed off to be married to a man who is known to be a philanderer because the family do not want to pay for her food and clothing.
When young human beings are the fodder of damaging marriages and booming sex industries in prosperous cities and towns across the globe, it is no wonder AIDS is spreading. It is happening because people apply different standards of justice to the poor, especially poor females. They are deemed less worthy of justice, and those who can afford to pay for their services abuse them. Often they are abused by Western pedophiles who would not get away with this in their own country, but there are many reports of respectable local men - professionals, lawyers, judges - who are pedophiles and use these children for sex. Activists have taken pictures of these men with their polished shoes and smart brief cases exiting well-known sex establishments that specialize in very young children. There have been reports of older women frequenting resorts in South India and using very young boys for sex in their slick, scented, hotel rooms. The things that go on across the US border in Mexico have to be read to be believed - and even then it does not seem possible. It is.
However, there are eyes on them, and that is the beginning of change. What brings hope to stories of plundered innocence is that there are people who stalk the abusers, and report their findings. Thanks to modern technology, it is easier these days to report abuse and violation, or take photographs - or roll the tape. If you have any of these skills, please use them to raise awareness for anything that disturbs you. It diminishers the power of the abusers. Silence is their ally.
There has been a lot more awareness around the issue of abused children in the United States and other wealthy nations, but in developing nations there are growing ranks of AIDS orphans, street children - so many of them, it is heart-breaking - child laborers and very young kids being inducted into the sex industry and begging syndicates. Some children are used as soldiers in countries torn by civil war, or by terrorist organizations, and many are brainwashed into becoming killers and suicide bombers in the name of a cause they cannot possibly understand because they are far too young. Collectively there are millons of them - all vulnerable to the worst kind of predators and diseases every single day - and most of them are ensnared through poverty.
It is disturbing to think what these kids might become in the years ahead - kids who have been abandoned, their dreams crushed, innocence stolen, bodies violated, and hearts broken. Some will not survive childhood, but what will we be able to say or do to diminsih the anger of the others? I wonder what it must feel like for a son whose mother is dying of AIDS to be told that she cannot have the AIDS medications that will keep her alive because the family are too poor to afford them - when the medications exist? I often think about these children, all over the world, including America, who are inheriting so much pain.
When childhood is stolen, and innocence harvested, it has the potential to yield remorseless adults that are capable of doing anything. One of the most meaningful chapters (to me) of the book takes an unflinching look at what is going on inside America's prisons, with young, non-violent prisoners. It is up to the reader to decide what kind of human being will emerge from such an environment. Quadruple the damage for prisoners in nations with a "lock them up and throw away the key" attitude.
There is a photograph of a family taken at Ashraya in New Delhi that illustrates the domino effect of AIDS: first dad is infected, then he unknowingly infects mum, and, saddest of all, the little guy gets it. Thankfully this family found Ashraya in time. The husband told his wife of his infection. They went together for counselling, received life-sustaining medications and found a support system that is so critical for those who then must return to their communities with a disease that is still stigmatized and discriminated against. Education is critical. There are hand-painted walls, each room has a different color scheme, and there is art everywhere. The children's rooms have the brightest colors and their own art on the walls. The real challenge is to take the dream and turn it into a reality that changes the lives of others.
There is not enough space in a short story to describe the good work that is being done, but there are incisive and uplifting commentaries in the book by those who are doing incredible work to diminish the negatives and increase the positives. Despite the focus on really serious issues, it is not about doom and gloom.The subjects I have chosen are people whose energies are focused on altering the balance, even in some small way, for those whose lives are mired in despair. They are the finest people in the world, and they come from all backgrounds. Sometimes all it takes is a small personal effort to change someone's life. That is what is so remarkable.
Professionally and personally I have always been invloved in the arts, which have sustained and inspired me from when I was a child. I just cannot imagine my life without paintings, films and photographs. It is no surprise to me that I was so moved by a few photographs taken by Nafisa. I have always loved volunteers, people who give their own time to help at a soup kitchen, or donate their clothes and toys to organizations that send them to kids overseas - kids that have never known the luxury of a wool sweater or an Etch-a-Sketch. It thrills me to see any small "giving back" enterprise in my community, like the kids selling lemonade to benefit our local firemen after 9/11. There they were again those sweet young girls and boys, after Hurrican Katrina struck with such devastating results, seated by their rickety table carefully laid with a checkered cloth and home-baked cookies, an American flag carefully taped to the leg to prevent flying off in the breeze. This is when it all begins - young. Their cookies tasted so good.
I watched my mother do volunteer work throughout my childhood - and soon she took me along with her. The orphanage was the most memorable of all the places we went to together. It had a huge impact on me, and I have written about it at some length in my book. At a young age I learned that very young children could be abandoned or given away by their parents for all kinds of reasons, mainly poverty, and that was a harsh reality for a child to absorb. But I also saw that orphans could be rescued, receive love, shelter, food, an education, and eventually move on to jobs that offered them independence, dignity and stability. It was no myth - my mother made sure I saw both ends of it, the sadness and the transformation to a new life. She made me aware of "community."
I grew up in India as a child, and I saw many boxes and sacks when I accompanied my mother to places where she volunteered her time, and most of them had the American flag imprinted on them. Back then I did not know I would live in this wonderful country. The boxes were crammed with clothes, sweaters, blankets and toys, all donated by Americans and distributed by philathropic and religious organizations to people they did not even know on the other side of the world. I thought this was totally amazing as a child, and I still do. I saw the smiles and excitement of the children who received their clothes and toys. Some had never known the meaning of a dress with a lace edge and bows, or a sweater with Mickey Mouse on it. I doubt if they knew who Mickey was, because they did not have television. Others shrieked with delight as they pranced around in real trousers and a button down shirt. Their joy was great, even though it was invisible to the donor. All acts of kindness are wonderful, they do not have to be huge or expensive.
When five teenagers volunteered their time to Ashraya-New York for five weeks it moved me beyond anything I had ever imagined. It was as unexpected as it was wonderful, and I did not want to waste their time, or their belief that something valuable would come of their commitment. Their made me focus on those who might be at risk in New York, my community.
So we took to the streets of New York with clipboards and a camera, and some of our experiences are chronicled in the book. Amazing, is all I can say. Standing with those kids talking to people in my community tipped the scales and compelled me to find a way to take six months out of a hectic life and write a book that was literally exploding in me by this time. It was demanding to be written, but where was the time? The decision was triggered by a call from a wonderful young gentleman from a publishing company, who asked me the very question I was asking myself. I will not spoil the rest of the story - it is in the book. This chain of events taught me that we can never really know what is out there unless we try, and that there is so much good in people - strangers we don't even know. It also showed me that following one's heart does not always have to be a sane endeavour.There was nothing practical or sane about any of this.
Throughout history, stories have been a wonderful tool for raising awareness for all kinds of important issues or injustice. I loved reading or listening to stories as a child, and my father is still a great story teller and singer of songs. The stories in my book are about the power of love and not letting go of one's dignity and freedom, in the face of all kinds of harmful forces. Stories, like art, are so powerful.
Activists do not ask themselves why they do things. Thank heaven for that. When an unknown woman with AIDS asked Nafisa to come and take photographs of her, she went. I am sure that when Nafisa entered the lonely room in a poverty-stricken part of town she had absolutely no idea what she would be confronted with. Nafisa has often given herself no choice in confronting frightening situations - including prison - because she is outspoken, pathologically honest, and totally incapable of suppressing the curiosity and protests that well up in her, which is what makes her so very special. I love her for it and so do many other people. She has worked tirelessly to protect her fellow Indian citizens from HIV/AIDS - back when no one knew what it was, or even dared say its name. She has withstood cold-shouldering, anger and denial. Activism is not a popularity contest, and Nafisa brushes off the negatives and marches forward. I have devoted a chapter to her, and it includes one of my favorite stories of all time, about attending a rural village wedding together.
The teenage volunteers reminded me of Nafisa because they were so honest and courageous. They did not take kindly to one bigoted man, but I won't give away that story either. Unable to silence her fearless voice, Nafisa is now championed by her government - who were the first recipients of her despairing salvos many years ago, when she raised the unpopular subject of HIV/AIDS in high places. Initially it was not a satisfactory exchange, because the official positon in India then was denial.
Today, India leads the world in AIDS infections, and with 5.7 million Indian citizens carrying this deadly virus, no one can ignore Nafisa. Instead, the Indian government has partnered with Nafisa's Action India (Trust) in creating an AIDS care home, which was not even a vague possibility back when she began her work. I often think about the day, not so long ago, when we walked around an empty building in a gorgeous tract of land filled with birdsong and fruit trees, where she told me of her dream that it would some day be a sanctuary for people living with HIV/AIDS. She said she would name it "Ashraya," which means "sanctuary," or "shelter," in Sanskrit. She said she could not afford to pay the rent for the property. Today, Ashraya is a bustling home for people with HIV/AIDS and her dream is a reality - the government of India partnered with her, providing the property and financial support. Whatever may go on in the wider world, Ashraya is a place where discrimination stops at the entrance gate, and people with AIDS are treated with dignity.
When the prostitute asked Nafisa to take the photographs, she knew she did not have long to live: "Please show the pictures to others, so this does not happen to them," she said.
Despite the sadness and despair she must have felt, this request was a turning point in her life. She had heard about the work Action India was doing in the local brothels - warning madams, pimps and prostitutes about AIDS, and the absolute necessity of clients using condoms. She asked her sister to contact the head of Action India - Nafisa. If a person is not a dreamer, or a believer - or a fighter - they could never imagine such a connection being possible. By successfully engaging Nafisa's attention, this amazing woman took control of the shattered remnants of her life and refused to remain a victim. She acted, and found a way to let others know what had happened to her because she wanted to protect them. She held on to her dignity, which even he worst discrimination could not take away from her. Pretty impressive.
I think of the smile on her beautiful face, which, unlike her body, was miraculously unmarked by the disease. She must have been a beautiful little girl once, before the brothels and AIDS ravaged her. She had no bitterness for the community that had forsaken her. Perhaps it was the love and care of her sister who did not abandon her that helped her retain her faith in humanity. It must have felt wonderful to see Nafisa enter her lonely room and fill it with her dazzling beauty - Nafisa has oodles of star power, a radiant smile, and a personality to match! I am sure she made her laugh and smile.
Whenever I was with Nafisa visiting people with AIDS in India, I noticed that she hugged them and held their hands, because they are acutely aware that people fear touching them. She definitely hugged the prostitute that day, because she is so affectionate. One person often makes all the difference between feeling loved and unloved - or of dying loved or unloved. Even in situations of terrible abuse, people have pulled through because of the love and support of one person.
Thanks to those photographs, the prostitute will not be forgotten. She took control and initiated them. I awoke on World AIDS Day, thinking about her. She died a few days after the photographs were taken.
In addition to her other achievments and commitments, Nafisa is now also President of The Children's Film Society of India. On Children's Day last month my mother called to tell me that Nafisa was visible on TV stations across the Indian sub-continent - flanked by Prime Minister Sonia Gandhi and President Manmohan Singh. The young are the future - and they have the potential to create change in any nation, provided we educate them well. Films are stories with pictures - perfect for educating kids!
All kids across the globe deserve this. Bigotry, discrimination, hypocrisy and double-standards are a major focus of "Harvest of Innocence," because these forces fuel despair, suffering and disease.
Nafisa represented India at the XVI International AIDS Conference in Toronto, Canada in August 2006. I regret that I could not join her due to family commitments, but I knew I would write about her involvement on World AIDS Day, which seemed like the most appropriate time. She now stands besides the leaders of India, and I know she will never stop raising her voice about issues that bother her. She sent me the transcript of her speech and here are some of her comments. The full speech will follow on the website at a later date:
"It is an honor to address this distinguished audience and represent my country, India, on this global platform. India, with an estimated 1.1 billion people this year, has a population that is amongst the most diverse in the world. This year marks exactly two decades since the first case of AIDS in India was reported in Chennai, Tamil Nadu. Since then, the situation has rapidly escalated into a national pandemic that has exceeded our worst predictions. So many lives of both my country's men and women have been lost, children have been orphaned, and poverty and hunger have been exacerbated. India, along with the rest of the world, has been fundamentally changed by HIV/AIDS......."
"By the end of 2005 India has earned the dubious distinction of reporting 5.7 million cases of people living with HIV/AIDS, the highest of any country in the world. A grim and remorseful realization is that these statistics do not accurately represent all the men, women and children who are known to be infected, in addition to the silent carriers. Research has shown that for every 25 who know they are HIV-positive, 75 are silent carriers......."
"I can definitely say that from our current position, a couple of years ago, there is an initiation towards large-scale changes in our fight against HIV/AIDS. For years, India did not include Ant-retroviral drug therapy in its AIDS control program. However, given how quickly the pandemic was spreading in India, three years ago I took it upon myself to convince the Finance Minister that ARV was needed. I said: 'Let us not forget that those who are most vulnerable to the devastation of HIV/AIDS are the men, women and children from disadvantaged, underprivileged and uneducated societies. How can one think about getting treated for HIV when one does not even know what it is? How can one think about seeking treatment for their condition when one cannot even afford to feed himself and his family? Most importantly, when there is no hope for treatment, why would anyone want to know their HIV status?'"
Nafisa discussed the effects of patent laws on affordable medications, and she quoted Indira Gandhi, former Prime Minister of India on the subject at the WHO Conference in Geneva in 1981:
"My idea of a better ordered world is one in which medical discoveries would be free of patents and there would be no profiteering from life or death."
In the concluding passages of her speech Nafisa zeroed in on the most critical issues that are causing this deadly virus to spread, everywhere in the world:
"India's response to HIV/AIDS cannot rely solely upon medical and healthcare means, but must include the social dimension as well. India is still a patriarchal society, with gender prejudice and unequal power in decision making between men and women. Women are unable to negotiate safer sex, which represents major social obstacles. Imagine a wife ordering her promiscuous and dominant husband to wear a condom? We are also dealing with a large rural population in which many of the men must travel to seek employment in urban India or elsewhere. Sexual promiscuity of these men, which is more culturally acceptable in India, has allowed HIV to cross state borders. Also, an environment of extreme stigma and denial breeds fear amongst the infected and keeps HIV/AIDS hidden, where it will continue to spread undetected throughout the general population."
Although Nafisa was referring specifically to India, the same conditions fuel the spread of AIDS in all societies. These similarities become very clear in the commentaries of Americans in "Harvest of Innocence. " There is a whole new generation out there that is terribly at risk because of they way they think about AIDS - and we need to reach many more of them with real information when they are young.
Who would have thought that New York, the wealthiest city in the world, would also be the city with the highest HIV/AIDS infections in the world's wealthiest country? That is the power of this virus - it strikes wherever the conditons are ripe, regardless of socio-economic background. Imagine for a moment its potential to wreak havoc in poor communities without a health-care infrastructure, when we cannot contain it in New York?
Amongst other universal issues, the insights and experiences of New Yorkers who have either directly or indirectly experienced AIDS have relevance for people anywhere in the world that are facing the same problems, which is why I chose their voices for the book. While we are used to freedom of expression in America, many people around the world do not share personal information about infection or abuse because they fear reprisals or discrimination. Here, it is possible to share important and even life-saving information, without fear, though it is never easy. Discrimination and abuse exists everywhere, but here we have the option to fight it - and expose it.
New York's problems are not that different from the world's problems, but because it is such a succesful city, difficult issues - like AIDS - often become lost in the glitter and glamour, which is an enormous part of this city's appeal. I felt New York was the perfect place to take to the streets and talk to people, because New Yorkers are willing to discuss just about anything openly, and they respect individual freedom. Most of all they do not turn away from issues that are disturbing if they are confronted with them. We were looking for honest answers to tough questions - and we got them. My only regret is that I could not include them all in the book. For some, the content might be too revealing, but without this level of honesty, the book would not have been worth writing - at least from my perspective.
Despite millions of dollars and unprecedented efforts by the City's health department - and enormous efforts by many incredible individuals and organizations - it has been virtually impossible to lower HIV/AIDS infection rates in New York. In fact, as anyone who reads the papers knows, New York City has had a rise in HIV/AIDS infections in heterosexuals (male and female), and the gay community. It is sobering how the same behaviors, ideas and taboos propel dangerous diseases and abuse across the globe.
Those who are informed are better equipped to withstand the negative forces if or when they come calling. We - the community - cannot live in a vacuum of denial without negative results. Certain really dangerous elements and forces are here to stay in our communities, and they confront the young and young adults every single day. We have to do a much better job of arming them, and ourselves, with real knowledge and preparedness to withstand them. because they are not going to go away.
I would not have written a book if it were not for all the beacons of hope I met and interviewed along the way. They work hard day after day, making a difference, or forging change for the future. They offer hope to people they do not even know because they want to. Others help those they know, or family members at risk. It is these people that make communities and nations strong. Their voices make "Harvest of Innocence" a hopeful book. I cannot deny some of the stories are really sad. I found two interviews so difficult, I had trouble staying focused. That doesn't happen very often. Everyone should read those testimonials.
It is a very special year that yields a book - and it could not have happened without the courage of those who contributed to it. I thank them from the bottom of my heart.
I think of the young volunteers in the streets of New York, with their big hearts and smiling faces, chasing busy New Yorkers with their clipboards and their questions! I remember their delicious sense of humor, their laughter. The beauty of the young is that they do not censor their thoughts or their speech. One day I turned the camera on them and interviewed them - and what a treasure trove of revelations and wisdom that turned out to be! I included some of their sassy, beautiful, and devastating insights in the book. It is amazing what love and education can do.
Writing "Harvest of Innocence" has been an amazing journey. Last World AIDS Day I had not even begun to write it, and now it is soon to be published.........I hope it inspires others to be well prepared, and to protect themselves and those they love.
Most of all I hope it prevents some suffering and harm. That is why I wrote it.