October 27, 2004 - It has been just over a year now since Ashraya-New York was founded, and it has been hectic – with much more work to be done raising awareness for HIV/AIDS. Many of those already infected live with their infection in secrecy - and millions are at risk for the disease - here in the United States, India, Russia and many other nations being burdened with new infections.
As always, we are especially focused on the young who are vulnerable to STDs (sexually transmitted and AIDS) and HIV/AIDS and drug and alcohol abuse – who often become victims of physical abuse, violence and drug-related crimes because they drop their guard, or their life circumstances change, and there is no one to lean on as they fall into the abyss of risky behavior. The young too often think they are immortal and believe nothing can hurt them – no matter which country they live in or what their circumstances are. This is not just an American phenomenon.
In the United States and around the world, the young are at risk for becoming infected with HIV/AIDS and they need savvy – not moralistic - reminders to guard their health. Once they get HIV/AIDS it’s for life because there is no cure at present. While it is possible to live a full life with HIV/AIDS – with the proper medications and treatment - preventing infection is crucial to stop the spread of the disease that will have infected millions – and the epidemic is in its infancy. Children will continue to be orphaned in developing nations, especially in Africa, and, sadly, some will also be infected. No one knows at present who is going to take care of these children.
This is of great concern to me. Although I would never live in New York, my home, I grew up in the East because my father worked for an American company, and I traveled extensively in South Asia; children in the East end up in the sex industry faster than anywhere else in the world. Poverty is the main reason. With millions of children predicted to live on the streets in the future, orphaned by AIDS, homeless and parentless, and it is inevitable that traffickers, predators, criminals from the human organ trade - any criminal with anything to gain by exploiting - them will do so.
This is already happening and it is beyond heartbreaking when one sees that some of these children are not even six or seven years old – some ever younger. The human-trafficking cartels are well armed and local police fear them because, frankl,y law enforcement, and poverty-stricken parents who cannot feed their children are offered money for their babies and any child that is up for grabs - they are complicit. And then the traffickers sell them for all kinds of trades and purposes, sometimes for their organs.
At a time when we are historically more technologically and financially advanced than ever before, we have a horrifically inhumane industry that employs thugs to exploit the world’s most vulnerable – children and adolescents – crossing state lines or shipping them around the globe like designer jeans.
Everything does not happen outside the United States. IV drug use and dangerous new drugs continue to stalk Americans of all ages, but especially vulnerable youth here at home, for all kinds of reasons. There is an increased prevalence of IV drug use where there is poverty. This is one of the most foolproof ways of transmitting dangerous diseases, which are often passed to family members, a double tragedy. We need to do more for the marginalized – bring them closer in to mainstream America. Hopelessness is a serious illness, and those without hope seek hard drugs - and the pushers are waiting.
Heroin addiction is one of the toughest addictions to overcome, even with the will to do it; so we need to do all we can to reach the young. That slippery precipice is as scary for them as it is for us. Steering them towards the places and the people best equipped to deal with their trauma, addiction or infection might save their life, and stablilize them. There are incredible people and organizations out there who can and do help - every single day.
Being a parent now is so different from our parents’ generation; we cannot think and act like them with so many new dangers out there confronting our children every day that were never present in the past.
If we love our kids, we need to learn about their world, not dismiss their interests, music and fashions as kooky, or intellectually inferior to everything we ever held dear. It is way tougher and riskier for them than it was for us, but they are strong and so amazingly resilient. However, it is critical that we help them avoid the downward spiral of poor choices, unsafe partners and deadly lifestyles. That takes real education and information.
AIDS is a global problem in certain communnties in America, despite our wealth and our science and our super-power status. The more we burrow down into the AIDS issue at home and abroad the more similarities we find. A universal plea from people living with HIV/AIDS around the world – and with rising panic at home - calls for less talk and more action on the ground in communities where people are dying when most know they don’t have to.
Those who are less fortunate are not in a place where they can take time out for anything because they need to keep the rest of the family on track and bring in the paycheck – which is not enough for many to cover health insurance in this country, for one. Some of those infected in the US stockpile and share AIDS meds with family members who cannot afford them, diluting the effectiveness of the treatment. AIDS meds must be taken according to directions.Urgent provision needs to be made for the uninsured with AIDS in the United States.
When a person gets sick in the US, and they don’t have health insurance, they fall into the same desperate crack that their counterparts in developing nations do. They die of AIDS when they fall out of the insurance loop, are not plugged into an organization that can help them, or do not have the funds to buy the medications privately. Black, Hispanic, white or young, if they do not have the dollars for insurance, or in their bank account, they die just like people are dying in Africa, India, or Russia. Being citizens of the wealthiest nation in the world cannot save their lives.
A few years ago my teenage son visited Russia for two weeks and brought back tales of brothers and boyfriends peddling the sexual “services” of their 12- and 15-year-old sisters in return for a six-pack of beer, cigarettes, or a few dollars, in a luxury high-rise Moscow apartment building. He was stunned and saddened by what he had seen. Childhood does not last long in some places.
AIDS is not just in Africa and Harlem; it is not just in African-American, gay, IV drug-using or promiscuous families; this disease has impacted on the population of one of the most educated countries in the world – Russia - educated in every area but HIV/AIDS and how to protect themselves or seek treatment (which does not exist). There is also a high prevalence of hopelessness among youth. Mr. Putin continues to stare vacuously into space.
After talking to dozens of New Yorkers in communities as diverse as Harlem, the Upper East Side, the Bronx, the West Village and Brooklyn, it is staggering to learn that here in the United States the African-American community – and increasingly the Hispanic community - is under siege from death and illness due to HIV/AIDS. Infections in the young of all backgrounds – but mostly the economically disadvantaged - are rising. An African-American woman who is well known to me through Ashraya-New York advocacy has shared stories this past year of loss and lack of medications experienced by friends in the Bronx and Harlem. She talks of stigma, shame and secrecy fuelling the epidemic in her community, a similar lament in India and Russia:
“People don’t want to talk about this disease, but it’s hurting us; it’s getting real serious. How many more funerals before people pay attention to this? It’s AIDS killing them, not some other disease, like they say it is. They need help and medications.”
In the developing world they do not get the way ‘not-for-profit’ people are dealing with the AIDS pandemic:
“All the money, all the donations, all the talk and not one AIDS medicine has reached me; I am dying but they keep talking,” said one woman in India who was infected by her husband. She included her own government in her tirade.
I sense the same mounting fear and panic in my colleague from Harlem; she has a husband, two children, grandchildren, and several of her monogamous friends have come down with HIV in the past year. Their husbands did not get tested for HIV; the men may have been living with HIV for several years. None of them have health insurance. She has found grass-roots organizations and hospitals that will help, but will they be able to cope with the full load in the years ahead, she asks?
"We need to ensure that any American with a serious infection is treated for free so that is does not spread to the innocent."
We always talk about our children and her face clouded over the last time we visited as she showed me pictures of her grandchildren, now approaching their teens. She tells me that drug pushers prowl around their neighborhood school, they loiter hopefully in the playground, they hang by the grocery store. Her grandson - a gorgeous young man with a movie star smile in the photograph - likes a pretty young girl at school:
“She’s “13 goin’ on 23,” she said with a weary Grandma smile. We both laughed. The young today are aware of what they can do, but not about risks.
I live in Manhattan. It is a cauldron for the best – and the riskiest – temptations life has to offer, so I do not beleive any child is immune from the pushers and peddlers.
Downtown Manhattan by is like a huge block party from Thursday to Saturday night – alcohol, substances of all kinds, dancing, you name it – and anyone looking at the gorgeous pack of youngsters gathered there would have to be a cloistered hermit not to know that half of them are focused on going home with a partner of either sex that night: not to watch MTV music videos; not to hug and kiss goodnight like they might do in a classic Broadway musical! Reading any magazine today there are stories about "friends with benefits" where kids and more mature young adults "hook up" for sex and then go their separate ways. All I can say is they need to get regular health check ups, and if they read some of the stories on this site, they will see that certain diseases hibernate for years with no symptoms, like Hepatitis C, which is a terribly debilitating disease, and spreading. There is more about Hep C in "Harvest of Innocence," a book I wrote for this web site. There is no quick fix drug for this disease.
Like it or not parents, most young people are going to “partner,” big time. Young girls are going with older men, for all kinds of reasons not necessarily related to money. They are all drinking like crazy. Without their heads firmly screwed on, the world of today's youth is an irresistable temptation alley. Sex will be up for grabs – and free. Health education has to begin very, very young today to avoid health risks that can last a lifetime. Prevention is best.
Alcohol and drugs make anyone drop their guard. It just has to happen once to get AIDS – thus far the most successful and as yet incurable - virus mankind has ever known. Do not think you are encouraging your children to be promiscuous if you say “condom” or “protection”; for emotional back-up and strengthening your resolve, read the statistics on the age at which kids are sexually active today. I find it hard to believe frankly, but there is no reason to doubt the sources.
One in seven African American New Yorkers and one in fourteen African-Americans in the United States have HIV/AIDS; the virus is the leading killer of African-American males between the age of 22 and 45. And this is impacting on their wives and partners who are monogamous. The infection rate is climbing.
For United States AIDS statistics and data go to www.cdc.org or www.nih.org. For information on how AIDS is transmitted go to www.aids.org.
In nations with free health care, those infected with AIDS get the meds for free. England, the Scandinavian countries, many of the EU countries all have free healthcare. Anyone who becomes infected with HIV/AIDS, or other life-threatening diseases in these countries gets the medications and treatment free. We have a much larger population in the US, and while we all wish for free healthcare, it may not be possible to give free healthcare to all; but something has to be done about those with treatable diseases like AIDS if they cannot afford the medications. It is inhumane and extremely risky to have no provisions for them - for the sake of those they might unknowingly infect, primarily wives and babies.
Many people know of the devastation caused by AIDS, even without knowing why it has spread as it has done, but it took a group of 18-year-olds to help me zero why so many people do not seem to react or care.
This summer, 5 young men, all around 18 years old, volunteered their time and energy to Ashraya-New York for five weeks – and came away with some serious observations and answers from total strangers, an honest picture of why some people are moralistic or callous about AIDS, and why they are so at ease with blaming instead of acting and helping those with the disease. These five young men wanted answers, and they went after them like dynamos.
When I realized the young volunteers wanted to go out into the streets of a city notorious for its directness, I decided I had to go with them because they were representing my organization and they did not have all the answers - no one does. I also went because I admired their courage and their belief in this effort - and I wanted to hear what people said to them about AIDS and healthcare in America when they were not rehearsed or “on their best behavior.” New Yorkers are well known for not pulling their punches, which is what I love about them.
The 5 volunteers came to Ashraya-New York because my son, (through the good grace of his school), had been given the green light to solicit volunteers – should they choose this organization over all the others available on the school’s list. Once they volunteered, their mandate was to help Ashraya New-York raise awareness for HIV/AIDS and those without health insurance in New York City for 5 weeks as part of their school’s Senior Class Project. This would be entirely voluntary, unpaid, and intended to benefit the community in a real way.
Each boy was to give the organization 35 hours a week. Frankly, I thought I was inheriting two or three volunteers at the most. iI was somewhat daunting to mobilize for five energetic young men and keep my professional commitments on track, but I was moved by their commitment to say the least.
Encouragement for our work in AIDS awareness was present from the beginning at my son’s school. From the Headmaster and Head of Upper School, to the Senior Class Project advisor and the faculty at his school, my son received encouragement. He has seen and learnt a great deal about how different life can be for those without secure families or health insurance, or money to pay doctors bills, right here in American and overseas in India and Russia. Curiousity about his own community became compelling. He wanted to find out more, with his volunteer friends, and share it. Prior to the Senior Class Project, my son had approached the editor and publisher of the school paper and they were extremely supportive and published an lengthy article written by him on the plight of people living with HIV/AIDS in India, and incorporating the struggles of African-Americans without health insurance, or the funds to pay for AIDS treatment in the United States. This helped the young volunteers notice, and want to help.
I shall never forget this day - May 17th, 2004 is etched in my heart - when I sat nursing my first cup of coffee, the doorbell rang and a boy and a bicycle entered. Two cups later I was at half the energy level of the five tornados in my living room – asking me what I had lined up for them? I looked in the mirror that evening and asked myself if I was insane. But I was so thrilled to have their support and I wanted to make the most of it.
For the next 5 weeks I was caught up in a vortex of energy I had never experienced in my life before. The momentum of the 5 boys together was from another planet a beautiful thing, and I decided to harness it for those who no longer know what it is to have any energy left, because they are ill, or have AIDS and do not have ARV medications.
The first task I set the boys was to conduct a survey in the streets of New York armed with clip-boards and pens – (“Lose the New York attitude boys, this is a non-profit remember?”). I beleive for the first few hours they learned what true humiliation is! When New Yorkers don't want to be bothered by a smiling young person with a clipboard they let them know - they are the fastest walkers in the world. I had to stop the boys chasing unwilling strangers as they dove for the subway station, away from the clipboards and attached boys! The young do not take "no" as an answer............!
“Remember guys, you are representing a health awareness organization,” I said, as they departed each morning with their clipboards. I was concerned that they might grow disheartened, but I knew deep down that New Yorkers have big, kind hearts. Many stopped because the boys begged, pleaded, charmed and cajoled – they did whatever they could to get their answers!
Here were the questions they had to ask people, one at a time, no Starbucks breaks:
Would a presidential candidate’s stance on AIDS affect their vote?
Should people infected with HIV/AIDS receive free medications if they cannot afford them?
The answer to the first was an overwhelming NO, which was sad; the answer to the second was an overwhelming YES, (about 93%), which was fantastic.
One woman said they were stupid questions; another said what about people with cancer, why the preferential treatment for AIDS? Another said what a wonderful thing the boys were doing, giving their time to a non-profit. One guy said he was going to start a condom company right away. A Russian lady said she went blind before she could afford to buy health insurance and she had worked every day of her life – but that did not help her keep her sight. Better if she had been really poor, she said; she would have received free treatment and kept her eyesight. That was sad.
One old guy said we were in his way, move out of my way. Then he felt bad because he came back and gave me his answer. "No" and "No." People with AIDS did not deserve anything in his opinion.
But we were so encouraged that all those New Yorkers thought AIDS meds should be free to anyone, here in the United States or anywhere in the world, who could not afford them – tall, short, rich or poor New Yorkers - all said free. Well, 93% anyway. That was awesome.
“So why aren’t they free?” asked the boys. (Kids always ask the questions that are hard to answer.)
One must remember, I said, groping for reasons, this is New York; New Yorkers are very special, they know the meaning of "humane." But there are many out there in the rest of the world who do not believe AIDS meds should be free, especially if the money was to be taken out of their taxes.
In between the direct, no-nonsense, we- want-to-answer-your- damn-questions-even-though-this-is-beyond-annoying New Yorkers, there were some people who were hostile, disgusted and one man literally got up and ran away when we asked if he had a minute to answer questions about AIDS.
This was the most valuable reaction of all, even though it was pretty traumatic for the boys.
“Why did he run away from me?” asked one volunteer.
I told him it was because he thought we had AIDS.
That was what it felt like for most people who had AIDS, I explained; people move away from them because they are so ignorant about the disease they think it can be caught just by standing next to someone with AIDS – even a New Yorker can think like that. But we were all shocked. Even I was shocked, because till then I never believed an educated New Yorker would react like that. He did, and he was a wealthy person, reading his newspaper on a park bench till one of the volunteers approached him.
Not one of the boys told the man they didn’t have AIDS, which none of us did, because they were so appalled by his reaction. One boy asked me if he could chase the man and call him a bigot – I said no, even though I dream of doing that to this day. He was entitled to his opinions I told the boys.
But that scared man running away from us was a tangible manifestation of the stigma of AIDS – born of real fear. Something that people with HIV/AIDS know about – wherever they live. We really felt it that day. It made us more convinced that more education, earlier, should be encouraged.
In fact, the man who ran away from us took the boys to a whole new level of activism. His negative reaction bore positive fruit.
Now they wanted to make a film! They interviewed each other, their young friends and members of the general public in the streets of New York – and came away with beautiful, terrifying, mean, sweet, jaded, confused, misguided and some of the most humane insights on why we have not paid enough attention to the most devastating pandemic mankind has ever known. Throughout, there were concerns for affordable healthcare and health insurance in the United States, where millions are uninusured, including many middle class families.
One day they did not switch the sound on the camcorder; another day they had a fantastic guy lined up who was ready to give his opinion and the battery was dead so nothing worked. The wires got tangled up in playing the footage back and the screen was blank so it seemed as though all those hours of work was wasted - but the right wire restored footage. Another day they were so disheartened by some of the comments from the public they asked why people were so horrible. Then they met a dear gay guy who gave them hope because his interview was so compelling and he wished them well. They got amazing commentaries from African-American women who were eager to talk into their camera. We encountered the full range of New York personalities and backgrounds. By now I was fully engaged in their project, and brought along a serious camera.
Their hard work and willingness to go out there and test the boundaries impressed me– so did their motivation to act and not just talk about AIDS and affordable healthcare. I learned so much with them in the streets of New York.
The faith of five young volunteers this summer and their personal commentaries and insights on why we should help people with HIV/AIDS gives me hope for the future of this tragic, unnecessary and inhumane pandemic, and for healthcare in general. If they represent the future, we are in good hands. But it will take continued focus and a great deal of hard work.
I am confident that these five young men will now go out into the world with the realization that they can inform others – simply, it does not have to be expensive, or rocket science - especially those who have not been given the same chance to protect themselves or make the right choices in this world as they have. They know that their family, school, friends and community supported them. Many kids today to not have that.
Whenever I grow weary of trying to get people to care about the devastation caused by AIDS or people that are not covered by health insurance in this, the wealthiest nation in the world, I think of the man running away from us in Central Park because he thought we had AIDS.
Then I think of the boys chasing New Yorkers in the streets with their clipboards.
All five volunteers graduated and each was admitted to several colleges of their choice.
A short film, including footage obtained in the streets of New York, was submitted by Michele Leight/Ashraya-New York, and accepted to the Amazon/Tribeca film festival short film contest in 2005. It is now in the process of becoming a documentary film, including some of the original footage with the five volunteers in New York. It is amazing what volunteers can inspire, and how far reaching their efforts can be.
All are honorary Ashraya-New York “life members.”