A Mother and her Child in the World of Down Syndrome in Nepal

Dr. Lalita Joshi, a retired Br .Gen. of Nepal Army Medical Corps with strict principals, simple and honest is driven by a deep love for her son Ashish, born some 22 years ago with Down Syndrome.   She married  Dr. Prabhu Joshi, an anesthesiologist, in 1980 and their first son, Amit, was born in 1981.  Amit completed his MBA in the US and is now working for an investment company in Nepal.  In 1989 Lalita became an OB-GYN.

In 1991 their second son Ashish was born.  For 14 days Ashish was in NICU before he was able to come home.  He possessed some facial features of a child with Down Syndrome and although the family suspected something, there were no real issues.  When Ashish was three the family went to  Madras for an elder 

sister’s renal transplant.  At that time Ashish was tested and it was confirmed that he had Down Syndrome.  Fortunately for the Joshi’s, Ashish has been accepted by all family members who refer to him as Lakshan Kobacha or lucky child.

The most common type of Down Syndrome[1] is called Trisomy 21, which accounts for about 95% of people affected.  Ashish has a less common type, known as Mosaic, which is a milder form of Down Syndrome enabling him to function at a much higher level. 

In 1995 Lalita accompanied her husband while doing Cardio –thoracic anesthesia training in Sydney, Australia . She also got a chance to do training in Infertility in Paddington Royal Women Hospital where she met Dr Stephen Horrowitz OB/GYN , her mentor. He too had a son with Down Syndrome.  Dr Horrowitz provided Lalita with the latest information on Down Syndrome along with a book written by a Pediatrician, Prince of Wales Children Hospital, Sydney and VCD on early Intervention developed by Macquaire University. All this helped her immensely to take care and train her son bringing him to his present independent and confident position.    

When Ashish was five years old he attended The South Point Boarding School in New Baneshor.  The school didn’t know that Ashish had Down Syndrome, as Lalita had kept this hidden for fear of him not being accepted by others. At age 11 the school realized that something wasn’t quite right with Ashish and that he had some learning disabilities. Lalita spoke with the principle and told him the truth., that Ashish had Down Syndrome.   Instead of rejecting him, the school decided to keep Ashish and take on this “challenge”.  The teachers, other parents and children treated Ashish with a great deal of respect, often helping him with his homework.

Ashish stayed at South Point until he was 18.  He sat for his SLC but couldn’t clear it.  Ashish at 22 has a full life and attends aerobics training twice/week, keyboard  (music) training 3x/week and basic computer training.  He also attends painting classes.  Lalita continues to look for avenues in which Ashish’s real talents can come out. Ashish is getting home training from an occupational therapist who comes to the home once/week which has helped him to handle money and independently takes public transport.

Unlike in India where I spent three years working in the field of development disability, In Nepal there are few services specifically focused on people with Down Syndrome.  Because of this and the goal of wanting more for Ashish, in 2006 Lalita founded the Down Syndrome Association of Nepal (DSAN).  Lalita says that “If every child matters, every child has the right to a good start in life. If every child matters, every child has the right to be included. And that is so important for children with special needs." DSAN’s vision is a Nepal where children with Down Syndrome can grow up to be independent, based on their capabilities, and be respected and productive members of society.

In Nepal there are no official figures on the number of children/adults living with Down Syndrome.  Lalita isn’t sure of the exact scope of her work but the goal of DSAN is to create awareness regarding Down Syndrome and opportunities  for those living with DS.  Lalita also provides pre-conception and pre-natal counseling to high risk couples who have the chance to give birth to a child with DS and also  translates Down Syndrome documents into Nepali, of which there aren’t many.  Lalita’s dream and major focus is to develop an early intervention centre which will provide therapies and trainings so that more people can have an early start in life helping them to become more independent and reach their own potential.  Lalita is also concerned about providing services for a full “life-span approach” in order for people with Down Syndrome to lead a full life. 

Drs. Lalita and Prabhu  Joshi want to find a partner for Ashish and hope that one day he will get married.  They would like Ashish to have a small business in order for him to earn  and be able to live on his own once they are no more.  In the end this is nothing more than any parent would wish for their children. 

You can reach Lalita Joshi at (lalita@dsanepal.org.np)

Michael Rosenkrantz can be contacted at mikerlakers@yahoo.com

What is Down syndrome?[2]

·         Down syndrome is a chromosomal condition that is typically caused when a baby is conceived with 47 chromosomes instead of the normal 46. Starting in the womb, this additional genetic material alters the course of the child’s development.

·         The most common form of Down syndrome, Trisomy 21, occurs when a child is born with a full three copies of the 21st chromosome, rather than the normal two.  In rare cases, Down syndrome is caused by other chromosomal arrangements.

·         Children with Down syndrome typically have intellectual disabilities, hypotonia (low muscle tone) and characteristic facial features, such as upward slanted eyes and a flattened nasal bridge.

·         Except for Translocation Down syndrome, which occurs in about 4% of people with Down syndrome, the condition is not inherited, which means that it doesn’t run in families.

What are the different types of Down syndrome?

There are three different types of Down syndrome:

·         Down syndrome (or Trisomy 21) accounts for ninety-five percent of people with Down syndrome. A child with Trisomy 21 has three copies of chromosome 21, rather than the normal pair.

·         Translocation Down syndrome accounts for just three to four percent of people with Down syndrome. Translocation is what people are referring to if they say that the condition is inherited, because usually one parent is a carrier. The extra #21 chromosome is present, but attached to a different chromosome in the egg or sperm. The clinical features of people with Translocation Down syndrome are indistinguishable from those with Trisomy 21.

·         Mosaic Down syndrome accounts for less than one percent of all people with Down syndrome. Children born with Mosaic Down syndrome have some cells with three copies of chromosome 21 and some cells that have the usual pair. Clinically, babies born with Mosaic Down syndrome can have the same features and health problems seen in babies born with Trisomy 21 or Translocation Down syndrome .However, the presence of cells with the normal number of chromosomes may result in fewer characteristics of Down syndrome.

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[1] See table below.  

[2] http://www.childrenshospital.org/az/Site803/mainpageS803P1.html

Communications and Customer Service

Communication and Customer Service

In the short time that I’ve been on the earth, the methods used for communicating have changed dramatically.  I used a typewriter throughout my university work along with lots of white out, started using e-mail when I was in my early thirties and didn’t have a mobile until I was 40. (I recently read that a Kremlin Security Agency is buying typewriters to prevent information leaks).   I own a laptop and regularly use e-mail, SMS, Skype and Facebook, but don’t own a smart phone or tablet.  All of these advances have made it so much easier to “flatten” communications and remain in contact with friends and family no matter where I might be living. 

It would seem obvious that given the state of technology, communication and customer service have improved, but I’m not sure that this is the case.  Part of this has to do with how busy our lives have become, at least from what I’ve observed in urban areas.  How often are we talking to someone face to face and get interrupted by a phone call or SMS or feel a need to check e-mails?  How often is it that one sends out an e-mail and gets no response? How often do we engage in active listening and really “being present” with others?  How often do people make promises and then not deliver by an agreed upon date? 

When I was Director of the Central Market, in Lancaster, Pennsylvania  the oldest farmers’ market in the US located in the heart of the Amish Country, I didn’t understand enough about the environment in which the market was operating, about being present, i.e. focusing on another person  and truly listening, greeting someone by looking into their eyes and taking the time to talk.  Living overseas has helped me to have more understanding regarding the depths necessary for intentional, conscious communication to take place, especially given that I am not fluent in any other language besides English.

It is important to consistently communicate, even if the response might be considered negative.  A good example of this is applying on-line for a job and receiving a mechanical response, “due to the high volume of applications received, only those short listed will be contacted”.  Another example is sending an e-mail asking a specific request and not receiving a response because the person might not be able to help.  How about when you call someone, there being no response and the person never returns the phone call;  or chatting on Skype or Facebook or other platforms and the conversation suddenly ends?     

On some level those of us fortunate enough to avail ourselves of technology have the capability to be in constant communication, but somehow we have become so inundated with information that we end up ignoring another person who is trying to make a connection with us.  By having the ability to use technology and not following up, we take relationships for granted and end up losing them.  This is true in all faucets of our lives.

Many years ago when I was Director of a small HIV/AIDS NGO in the US, I was so enamored with e-mailing and sending out many mails, that I began to lose a personal connection with my colleagues.  Instead of walking down the hall to chat I would have an e-mail conversation because I thought that it would be more efficient.  In fact, it only served to put up barriers. 

In both my personal and work lives I try to focus on the person that I’m speaking with, but it is not uncommon for me to be having five chats at one time on Skype and FB.  In this way I’m not serving anyone and can’t be present for the person on the other end.  I wouldn’t be surprised if the people that I was speaking with were in a similar boat and chatting with a number of others. Multi-tasking is such a way of life and even I do it.  While recently in the US, I spent time on the computer, chatting with friends, not wanting to lose these connections; I enjoy being connected throughout the world,  but maintaining my ability to have face to face relationships is key.

How we communicate with others, determines the strength of our relationships and the service which we’re willing to provide.  Prior to going to the US I had to change my flights a number of times and literally spent hours and hours on Skype with the on-line travel company.  They were always courteous and I felt as if they provided excellent customer service, being very responsive and attentive to my needs.  Some of the results of our conversations responded to my request but some didn’t.  The important thing for me was that somebody was listening and doing their best to help.   Upon returning to Nepal I had a customer service request for a local company.  Initially I was somewhat hassled and told that nothing could be done because of the rules.  I spoke with three people who said they couldn’t do anything.  I then sent an e-mail explaining the situation and miraculously, without any notification, the issue was resolved. 

My personal acknowledgement as to how to communicate better has come with maturity. It isn’t that I will slow down in my work and interests, but it does, as my VSO training emphasized over and over, come down to building relationships and this comes through personal communication. 

Beauty and Gender

Ultimately it isn’t about how externally beautiful a person is, but is more about what someone does with their abilities

I’m not sure how many times I’ve told  a woman that she is beautiful, resulting in a smile appearing on the woman’s face.   On my part, stating that a woman or a girl is beautiful or a man or boy is handsome is intended as a compliment.  However, I don’t often tell a man that he is handsome, after all,  men don’t say this about other men.   I’ve been thinking about how commenting on physical beauty reinforces gender stereotypes, something seemingly considered to have societal importance, leading to a very superficial understanding of and connection with others.   I question  though what really is beauty and why should it take on so much importance, especially when it comes to how we view women? 

In my eyes, my daughter is very beautiful, slim, tall, lovely facial features, but her depth goes well beyond her appearance as she is an actor, dancer, musician, writer, director and singer.  Beyond her physical features, she is smart, sensitive and has a depth of personality which makes her very interesting.  She doesn’t change her Facebook profile picture, which is anyway, usually not her face,  very often and although she cares about her appearance, isn’t hung up on this, a quality that I’ve found to be highly unusual, especially among young women.

We may harm our children, especially our daughters and other female members of our families  by continually describing them as being  beautiful , a comment that if not followed up with an equal statement of you are, e.g. smart, on  some level means that females may not be taken seriously .  (Would we only say to boys that they are very handsome without also stating that they are also, e.g. good athletes or smart?)  Reminding a girl or a woman that they are beautiful  maintains a need for attention,    a striving to look like the celebrities who are so very prominently “displayed” in our daily lives.  On the other hand, when we see someone who looks “different” or is considered “ugly” we tend to shy away, make unkind comments or see the person as “invisible”.  A judgment is made and possibly even a dismissal based upon how we perceive someone’s outer beauty. 

Breaking down gender stereotypes, i.e.  how one is supposed to look, act or dress is a difficult task and requires broadening our thinking, and in our male dominated societies, treating women as equals.  Recently I saw a number of women wearing green and yellow bangles and mehndi painted on their hands.  I decided to have  a neighbor paint a pattern on my left hand, something which I had done twice while living in India.  The comments of this experiment ranged the gamut from “not suitable” to smiles to seemingly it is ok because he is a Badeshi (foreigner).  Did wearing mehndi mean in people’s minds, especially those of other men, that I should be treated differently? 

I understand the differences in dress between men and women, how clothes might be designed to highlight a person’s body.  But who  is this for?  In Kathmandu I haven’t seen many men in short shorts, or low cut shirts exposing their chests.  It is a person’s right to choose how they dress and express their individuality, I would never argue with this, but does the person feel empowered or  does this only serve to reinforce society’s views of the differences between men and women, including how someone is viewed by others?  If a women is to be truly powerful and taken seriously, must she wear a business suit and have the “toughness of a man, i.e. must women conform to “men’s dress” in order to change men’s attitudes?  Are women, in general, considered too fragile by men to not be tough enough to take on difficult corporate and political assignments? 

One method for creating further equality is through legislation, but then one might question who  is the implementer and is the legislation being properly implemented.  Can having reservations for women or for that matter anybody, e.g. in politics, really help or is it more about having strong advocates running for political office and  breaking down barriers?  Does this issue really come down to those holding power, whether they be part of a caste, gender or political group,  creating an enabling  environment for the sharing of power? 

Women in the land rights movement seem to be able to avail themselves of power, but this might have more to do with the fact, that in the views of society, the landless and land-poor men of Nepal, hold little power.  Never-the-less this is a major shift in how Nepali men view their wives or daughters enabling a more equitable distribution in power sharing and decision making.  As more women and men share land certificates, at least, part of society may change their gender views.  But will this translate into further equity throughout all of society?

Continuing to think about and make small changes in gender equality issues is vital for societal health.  I try to do this on the basketball court when I’m conducting trainings for young men and women.  Whenever I see the children self- segregate, which also may be a function of their age, I immediately ask them to integrate.  At first this is somewhat of a “chore”, but over the course of the training gender differences seem to disappear.  I explain to the children that on the court there is no gender, only teammates. 

We all look for beauty in the natural world as if somehow finding this leads to more happiness.  But if this is all that we aspire to, we miss out on the many shades of diversity and what this brings to our lives.  It is up to us to recognize how beauty is more than skin deep.  Once we change our perceptions, and lead by example, in the longer-term society will also change to become more equitable. 

 

Development and Partnerships

Development and Partnerships

I wasn’t carrying an umbrella and as I jumped out of the bus into the rain I made a quick leap to some shelter where I found a young couple and a young woman with her child sitting on some steps.  I played a little with the child and as the rain subsided,  and I decided to leave, the woman put her hand to her mouth and touched her child. 

I don’t like to give people money, but I am willing to give food.  In my mind there is a difference, although both create a kind of  dependency.   I proceeded to a small restaurant where I bought veg  momos and then tried to give these to the woman, but she rejected this,  as she had only wanted milk for her child.  I gave the momos to a man who looked as if he hadn’t been eating.  

As a  person learning to be a “development”  professional/volunteer  this was a very poignant experience.  If I had paid a bit more attention and had  been able to communicate in Nepali, I would have known that the woman didn’t want food for herself but only wanted milk for her child.    She may have been hungry but this was about her child and not  about sharing skills or building capacity to assist the woman in her livelihoods pursuit.  This was about pure charity, about being kind towards others, but was it really helpful?    

I know that from  being a VSO volunteer at Community Self-Reliance Centre (CSRC) and working with people such as Jagats Basnet and Deuja and Som Prasad Bhandari,  and through conducting TV interviews with NGO Directors, such as Radha Paudel of AWON and Ben Ayers of the dZi Foundation, that the common thread is that these organisations, including VSO,  pride themselves in listening to community members and what they want/need.  This type of “development” work is about  active listening at the “ground level”, not making any presuppositions regarding somebody else or throwing money at a situation. 

Partnerships must be part of the equation for real development  to occur.  This should include civil society in collaboration with those who have financial resources and expertise, i.e.  the  private sector e.g. the CG-Yunnus Centre Social Business Fund and government, e.g.  Nepal Government National Land Use Programme,  US AID Global Development Alliance as well as, numerous other country bi-lateral programmes.  Partnerships  can help those who don’t have access to the mainstream to become part, should people so desire. 

Becoming part of the mainstream to me means an increase in access to and use of technology.  However, I’ve witnessed a huge digital, information and life opportunities divide not only in Kathmandu, but even more markedly between urban and rural areas.  This was also the case during my three years living in New Delhi.    This divide maintains the status quo, keeping people in the cycle of poverty with fewer educational (especially for girls), health, energy and livelihood opportunities. Eventually this divide will be flattened as there are private sector markets waiting to be enhanced, but progress will be slow, as educating people about the benefits and how to use technology will take time. 

In development the operative phrase, something that we all need to be conscious of is what do others desire?  Civil society, governments and the private sector must therefore ask, and  then more importantly listen to the people who are impacted.  This could mean something as simple as  ensuring that a child’s nutritional needs are met at any given moment.  The place in which partnership comes into play has to do with ensuring that needs are met in the long term by providing opportunities for, e.g.  a family to become self-sufficient.  If this can occur,  true development focused on the ground will become a reality. 

    

FISHing

FISHing

Pike Place Market in Seattle is considered the grandfather of public markets in the US having opened in 1907.   The Market was one of my stops on my recent visit to the States  as I enjoyed the smells, the sites, the colors offered by the variety of vendors.  One of the main attractions is the Pike Place Fish Market where one can literally see fish flying through the air.  When a customer orders a fish or crustacean,  an employee will throw the fish to the guys behind the counter.  This not only entertains the crowd that has gathered to witness the flying fish but also provides a sense of fun, bringing smiles to people’s faces.

What we witnessed was that a group of fishermen have taken what could be a very boring job and have developed, a corporate culture philosophy called FISH which is based on:

1)      Being there, i.e. being present with others.  When being with someone set aside distractions and give your full attention to that person;  2) Being serious about your work but don’t take yourself too seriously and play, be enthusiastic about whatever you are doing.  3) Making another’s day, be thoughtful, kind, give thanks and recognition to others, make others feel good; and  4) Choosing your attitude, we all have our own issues and challenges but every day, in every moment we can decide how we choose to be.

Given my affinity and love of markets, and along with the other employees, we incorporated this philosophy into my workplace when I was Director of an HIV/AIDS NGO called the Alliance for Living.  (I also introduced this to the National Trust in India).  Ensuring that we could provide our full attention to People Living with HIV/AIDS and their families and that we could still have fun, being kind and patient;  when walking in the door of the office being as positive as possible were all vital elements, if we were to perform our work effectively, with empathy and compassion. 

I was happy to be reminded of the FISH philosophy, especially choosing one’s attitude and I thought about this upon my return to Nepal.  I want to remain comfortable living in Nepal although I’m geographically far away from my birth family and friends who I’ve known for decades and the familiarity of the US.  This takes on new meaning as my parents age, my grown children get on with their lives and everyone, no matter where they are living become absorbed in what makes sense to them.  But, as a friend recently reminded me, it does come down to choosing one’s attitude, no matter what the circumstances might be.

It seems self-evident that as we choose to be positive it can help us to be present with others, to enjoy life, no matter how desperate our circumstances and  be considerate and understanding of others on a consistent basis.    It is an approach, although not easy as life can be difficult, that can only make things better for everyone.

On a much larger level implementing the FISH philosophy might ultimately mean creating more equitable societies, based on treating others with respect no matter what their life status, schooling or caste, color of their skin  or political beliefs and listening to other’s stories with empathy and compassion regarding their specific challenges.  Choosing our attitude to be positive might translate into being open to new ideas and ultimately alleviating poverty, disease and creating environments enabling a greater quality of life for more people. 

As individuals if we can live by a positive philosophy, providing space for all of the diversity in life, we can  come together to make great changes and cause our institutions to do the same.  All we have to do is FISH. 

 

Further Perceptions

As I sat looking at the rain drenched runway and the line of airplanes waiting to take-off at LaGuardia Airport in New York City,   I had a moment of pure ecstasy.  It might have come from the music playing on my laptop, or maybe the fact that I just had a wonderful  three days visiting with my uncle and aunt and some cousins, or that I had spent a day with some really good friends or the fact that I was heading to visit some more friends in Boulder, Colorado, my parents and my children in Los Angeles, and others  in Seattle, all of whom  I really love and enjoy spending time with.  Maybe it was more general, just about visiting the US, where I was born and had spent most of my life, but also knowing that once my vacation ended, I would  be returning to my home in Nepal.  Whatever it was that I was feeling, it was a moment of bliss.

This is not to say that I usually feel miserable or unhappy.  I do my best to remain consistent in my feelings, paying attention to my “internal life”, trying not to let the external and others greatly impact me.  But I haven’t reached the status of or even come close to being someone exempt from the vagaries and challenges which life offers on a moment to moment  basis. 

What I’ve found during the past four years of living in India and Nepal  is that I’ve had a number of moments which stand out where I can honestly say to myself,  and feel,  true happiness.  It could be something as simple as walking from Thamel to Sanepa and photo graphing people and buildings in Kathmandu Durbar Square,  or sitting in Potter’s Square in Bhaktapur, lounging in Boudha and then walking to Kopan or visiting friend’s homes and their families in a village.  It might be about sitting with a diverse group of friends and thinking that, in this moment, this is the only place where I want to be, or seeing the smiles of children and adults participating in sports, seemingly not at all paying attention to the fact that they are playing in a wheelchair or are blind.  This might also come from traveling on a train throughout India in order to see the richness in cultural diversity, food and dress.  But the feeling might  also come from not limiting myself and  being on what I consider to be a “road less traveled” or being a “stranger in a strange land”, both of which fill me up to no end. 

I know that it is easier living in the United States. The infrastructure is well maintained, things are very orderly and familiar, there is less pollution, garbage is almost non-existent and people genuinely seemed concerned about the environment.  However, the US,  although rich in a “melting pot”  diversity, seems to lack the depth of culture, adventure, challenge, color, the unexpected and everything else that goes along with living and being part of a so-called “developing country”.   

Nepal and India are the opposite of the United States.  There is so much color, that at times it is blinding,  the cultural differences provide so much stimulation that sometimes all I want to do is close my eyes and dream,  the opportunities and challenges abound to the point where there is never a sense of  “been there, done that”.  The everyday way of shopping at open air markets and small family owned shops, where my communication skills might be limited, is so much more endearing than the large generic corporate stores, although there are more alternatives,  found to be dominant in the US. 

Of course both Nepal and India have infrastructure.  The Delhi metro  matches   similar transportation systems anywhere in the world.  Public transportation in both countries, very inexpensively, moves people, not in the most orderly fashion, but gets people to where they need to go.  The development of new infrastructure, of which there is a lot to be completed, presents incredible opportunities for developing more accessibility, leading to further inclusion, enabling a large number of people to become productive and fully participating members of society.

Unlike the US, which is somewhat formulaic, Nepal and India, although much older cultures, have the opportunity to continue reinventing themselves, to be something new, to change the perception as to how others view “developing countries”.   India with the world’s (second) largest population and  “democracy”, huge resources and ideas has become a major player on the world stage.  Nepal, on the other hand, is a small country, but due to its strategic location between two giants resulting in a major interest on the part of the US, has the capability to also be a world player. 

Both countries have large masses of people living in poverty presenting huge opportunities for government, civil society and corporates to develop creative solutions for bringing people into the mainstream.  There are major issues to overcome, such as caste, but when I think of the possibilities to come out on the other side, this creates a sense of unlimited excitement. 

During the past four years my appreciation for differences has grown, leading me to knowing that I can adapt in a variety of settings.  Given this, I’ve come to feel more comfortable living outside of the US with my perceptions of others forever changed.

Perceptions

Written from New York City on my first evening back to the US after one year. 

Due to my “cheap” flight arrangements, and before transiting through China, I had had some visa issues.  I didn’t realize that I needed a visa, given that I only wanted to transit.  When I originally went to the airport with my ticket purchased some three months earlier, I was not allowed to check in.  When I tried to get a visa in one day,  I wasn’t allowed to apply.  But one and one half weeks later, after successfully obtaining a visa in the regular four working days,  I was able to board a plane for Kunming.  Based on my short visa experience, admittedly I was somewhat biased as to what I might find.

I arrived in Kunming around 10 PM.  Since I now had a visa and about 24 hours I decided to venture into the City.  At the airport, I went to exchange some money and was advised by the attendant, that she would have to charge me $10 and that I should try an ATM.  She also recommended a hotel and told me how to take the bus, rather than a taxi.  I was told by numerous people before I came to China that hardly anybody would speak English, and this made me a bit anxious, although given my four years of living overseas, I felt that I could overcome any language barriers. 

Everything was incredibly organised as I paid for and found a seat on the bus, which was fully air conditioned, had a television, nothing different from anything that one might find in the States, and possibly even better.  The number of people helping/directing was astounding to me. 

As we left the airport I again noted the orderliness and how the highway resembled what one would find in the States.  The last stop was the hotel.  It was now after 12 and there were no rooms.  The one employee who spoke English said, “follow me”.  We went through some alleys and made our way to another hotel  where we were told again that there were no rooms.  A third hotel, nearby,  bore fruit.

The employee took me to my room, opened the door and even made me a map of how to get back to his hotel in order to take the bus the next day.  I was amazed by this employee, seemingly going out of his way to help me. The customer service was excellent and I felt as if I was in the “West”.   As he left my room he said, “Welcome to China”.   

The next morning I ventured out, walked a bit, found a lovely little restaurant and was able to explain that I wanted vegetarian dumplings.  I was astounded by the number of technology related shops in a small city area.  I was very pleased to see fully accessible sidewalks, large streets, many trees, bicycle lanes and cars and buses following traffic signals.  In terms of infrastructure, I was already in the “West”, maybe even better.

On Sunday afternoon I arrived in New York City and went directly to clear customs in the US/green card line.  What I observed astounded me.  In this line there was literally a United Nations, with so many variations in skin tone and a plethora of languages.   My ride on the subway to my relatives home reinforced this feeling.

One of the reasons, as to why I’ve wanted to live overseas, was to gain a greater appreciation for the US.  The “UN observation” gave me one of those moments, as I’ve been used to seeing so much more homogeneity in my brief time in India and Nepal.  This also made me wonder what it means to be an American?

All in all it feels good to be back in my birthplace, but also knowing that a larger world has always been available. 

Making Voices Heard

On a recent Thursday I trudged through the rain, flooded and uneven muddy streets and sidewalks, in order to attend a program titled, the “Collective Campaign on Women’s Proportionate and Inclusive Participation in Upcoming Election”.  The Nepal Academy auditorium was filled to capacity with more than 700 people, primarily women, in attendance. This program was sponsored by Sankalpa a Women's Alliance for Peace, Justice, and Democracy.  Sankalpa is a very inclusive organisation and literally means a resolve, a promise, a commitment, and determination. The Organisation strives to give voice, genuine space, dignity and respect to Nepali women in the new constitution and is working towards the "Mission 50/50" Campaign, meaning proportionate and representative participation of women at all levels of the peace process and in all state structures.  Sankalpa is also working on a national campaign for a minimum 33% female representation in the upcoming election.

As I left the program, it was continuing to rain.   I walked in and out of puddles, approaching the main road and a university where I encountered a number of police.  As I looked up and down the street, I noticed that there were no vehicles, which was odd for 3 PM.  I saw a number of students in the street who apparently were part of the Akhil Force, a youth organisation under the student wing of the CPN-UML, All Nepal National Free Student Union (ANNFSU). A few speeches were being made and after about 15 minutes the students and police scattered and traffic resumed. 

On Friday as part of the NTV Inspirations Show  I Interviewed  Bhakta Bishwakarma, Chairperson of  the Nepal National Dalit Social Welfare Organisation (NNDSWO) established in 1982 when it was not allowed to even utter the term ‘Dalit’.  The Organisation focuses on ending ‘caste-based discrimination’ and ‘untouchability practices’ throughout Nepali Society, as well as Dalit focused development programs and advocating for socio-economic, cultural, political and educational rights.  Throughout the interview Bhakta told me stories of personal discrimination and how he worked to overcome his seemingly life’s fate, in order to become an advocate and now lead NNDSWO. 

On Sunday I went to a mass rally and disability bazaar, at City Hall, which included more than 300+ people, for the, “Launching of the UNICEF State of the World’s Children’s Report-Children with Disabilities”.  Since I spend a good deal of time in helping to facilitate disability sports, this was an opportunity for me to be with a variety of differently abled people, who were taking advantage of opportunities and participating in life.  The performances at the Launch by differently abled people, including the Captain of the Nepal Army Wheelchair Basketball Team and his dancing partner Roma Neupane, were so very touching.  However, the rally and bazaar brought up a number of questions for me including how to increase accessibility for differently abled people in Kathmandu, as well as, how to increase sensitivity to this issue throughout society. 

On Monday evening I was able to interview nine men and women who are Dalit, Haruwa/Charuwa who were staying at CSRC and advocating, with government officials, for their rights.  Through a translator I was able to hear their stories of being illiterate, living in poverty and long-term generational “bondage”, leaving little future hope for their children.

The common thread that I see in all of this is that like the rain flooded, muddy streets and sidewalks, life is a struggle and is messy, and there is no straight, level path, especially if a group is considered to be “marginalised”.  I realize how important it is to live in a society which allows and enables those who are considered marginalised to be heard.  But real change will only come if all sectors, i.e. government, civil society and corporates can come together.  In some sense all of the events, although there was media coverage, but as witnessed by those in attendance, were “preaching to the choir”. 

These glimpses into some of the challenges and issues facing Nepal, provides me with hope that if advocacy efforts continue in a pro-active manner, more inclusion, over the long term, might become a way of life.  

I-MAN travels to ASU

I-MAN’s[1] Visa Adventures

After spending one year on the planet of LAPEN, I-MAN wanted to reacquaint himself with one of his birth places, i.e. the ASU.   He also needed to get back for his Bar Mitzvah, which was a very important event in his life.    He could have easily flown using his superhero powers but wanted to see what it might be like to take a really, really long flight for a really, really low fare.  

On Tuesday, May 28, in the LAPEN year 2070, I-MAN was supposed to leave for ASU.  He had purchased a ticket two months ago and had some layovers on the planet Anihc, which he didn’t think too much about, since he would arrive at odd times and stay in the airports a la Tom Hanks in The Terminal, except for one change from domestic to the international airport in Iahgnahs.  I-MAN’s good friend and confidant Unhsib drove him to the KTM airport and his friends Arat, Tarahb and others met him for a lovely Nepali send off, which almost brought tears to his eyes.  Little did I-MAN know that these tears would be on the verge of flowing as soon as he tried to board the plane. 

I-MAN went into the airport around 1:30 and thought that he had plenty of time for check-in for his 4 PM flight.   At the check-in counter he was told that he needed a special visa because he would be in Anihc for more than 24 hours!  I-MAN’s sense of excitement of sleeping in Anihc airports under the watchful eyes of  Chairman Oam of the board statues and posters, at least that is what he pictured, dropped about “100 floors”.   Unfortunately I-MAN, being an international planetary citizen had never consulted the CheapOAir website, from which he had purchased his really, really cheap ticket,  which apparently provided information regarding the potential need for a visa.  I-MAN was flabbergasted as the Anihc Eastern employees tried to help but to no avail.  They suggested purchasing a ticket, for $1,000 to San Francisco, which would put I-MAN in Anihc for less than 24 hours,  but which given his internal ASU flights would really mess things up.    I-MAN went home very dejected, trying to think about his next steps. 

When I-MAN  arrived home he Skyped  CheapOAir which is actually located in Ihled, although they have a Kroy Wen City address.  CheapOAir explained that they don’t advise on visa issues and that I-MAN should have checked their website.  Unfortunately there was nothing on his ticket indicating a need to check anything, as if somehow he should have known.  (Given the fact that I-MAN is a superhero maybe he should have). 

After multiple calls to CheapOair, all of which revolved around waiting for the California office of Anihc Eastern to open I-MAN got to the point of changing the reservation to Friday the 31^st.  This was after spending 2.5 hours on Skype with a CheapOair supervisor.  However after paying an additional $650 CheapOair migrated into samepricesasotherinternetairlinecompaniesOair.   It was just magical!

After reviewing the site of the Esenihc Embassy in Kathmandu,  I-MAN felt that he could obtain a visa in one day. The website clearly indicated that extreme rush visas, one-day,  were possible, there was even a section specific to ASU citizens.  I-MAN thought and thought about this, i.e. should he trust a website from an Embassy, and finally, he decided that he should.   I-MAN was once again excited and thought that it would be possible to leave during the week, which would maintain all of his plans.

On Wednesday morning I-MAN took his visa photos, printed out all forms and made it to the monolithic cement walls of the Esenihc Embassy, where he waited, along with some 20 other people, for the metal gate to open at 9:45 AM.  Everyone scrambled into the office where there were a number of windows, one for people like I-MAN, applying for their visas.  There was also a special door for Tibetans, whom I-MAN saw rubbing their prayer beads and chanting as they nervously stood in line.  There was also an English magazine called, “Sanihc Tibet”.   I-MAN wasn’t all sure what this meant, because he thought that it was Tibet’s Tibet. 

At about 10:10 the employees decided to take their places behind the glass windows.  (The office is only open between 9:45-11 am Monday-Friday).  I-MAN approached the front of the line, feeling as if he would get to go to the ASU, when the man behind the glass window looked at his application and said, “we don’t do rushes for,  Snacirema see my supervisor”.   That feeling of dread hit I-MAN’s stomach as he tried to explain to the Supervisor what was on the Embassy website as well as posted on the office walls.  The Supervisor’s statement to I-MAN was, “we don’t do rushes for Snacirema, if we try to put a rush on, the computer will reject it.  This will take the normal four business days”.  I-MAN felt like crying, as if somehow he would never get to the ASU and as if he was throwing his money down a very red hole in which he would never recover. 

I-MAN dragged himself back to his flat in Sanepa and called samepricesasotherinternetairlinecompaniesOair and they said we can’t do much now but call back later when the Kroy Wen Office of Anihc Eastern will be open.  I-MAN felt so drained by all of this,  that he went to sleep for a few hours, something that he never does in the afternoons, no matter how tired he might be.  When I-MAN woke up he called sameprice….and spoke to a supervisor.  I-MAN  felt  that the service at sameprice…was really outstanding.  The people from Aidni with English names like Maynard were really good but I-MAN wondered why they didn’t use their real names and what were their real names anyway?  A supervisor was really helpful and spent another 2+ hours on the phone with I-MAN and just as they were about to  change the flight, the internet went out!  What else could go wrong?

The internet came back on and I-MAN immediately called back trying to get the same supervisor, but to no avail.  He explained to another supervisor the situation and said you cannot charge me and she agreed, got I-MAN the flight and it was done after another hour plus long Skype call. 

On Thursday morning, I-MAN’s friend Lomna picked him up and drove him, once again, to the Embassy.  They were early and had some milk tea.  Finally the gate once again opened and I-MAN was in line, trying not to be too nervous.  I-MAN met two men from the Kathmandu Post who were going to a conference in Anihc.  Finally it was his turn and the same man behind the glass window, said, “TALK TO THE SUPERVISOR”.  I-MAN started thinking about how Chairman OAM of the board must be smiling in his very cold dwelling, thinking about messing with people from the ASU.  Most likely his thoughts were of a cultural revolution and starvation, or some such nonsense.    

The Supervisor remembered I-MAN from the previous day and  he explained everything and said, “we’ll give you a double entry visa, so come back on Tuesday.  Also in order to go from one airport to another in Iahgnahs you can just talk to the border police who should give you a pass.”  Thank goodness it finally looked as if I-MAN could go the ASU, but what about those border police?  I-MAN wished that he had his Chairman OAM pins and red star hats, but they were most likely stored somewhere in a basement in Connecticut. 

Finally Tuesday arrived and I-MAN was the first in line.  He spent some time talking to a young man from Dnalnif who had dreams of going from Lapen to Dnalnif overland, through Anihc on some trans Anihc-Mongolian train thing.  He also wanted to visit Tibet.  The Man Behind the Window  (MBW) said to I-Man’s new friend, “What is your purpose in visiting China?”.  When the young man from Dnalnif explained the situation the MBW said, “go see a travel agent and come back later”.  The young man didn’t flinch and when I-MAN finished he would wish the young man, “good luck”. 

I-MAN nervously gave his voucher to the teller who gave him a receipt so that he could pay ASU prices to go to sleep in some airports in Anihc.  This time it worked and I-MAN had visions of Chairman Oam of the board thinking, “I need to mind meld with the border police, just wait and see what happens to you  Nacirema.  I wouldn’t sleep in my airports if I were you!”

Less than 24 hours to go and I-MAN is quite excited for this visa adventure to end and for another with the planet of Lapen to begin. 

I-MAN will always be indebted to those of his friends and family who showed him what empathy is all about.  This was really a good lesson in listening and caring and had many implications for I-MAN’s life.  He will also always remember  the muzak, when he was on Skype hold, which was a lot,  affiliated with samepricesasotherinternetairlinecompaniebutatleasttheyprovidereallyexcellentcustomerserviceOairbut theyalsocontinuallychangeflightdetails. 

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[1] Many people throughout the world know about Batman and Robin, the Green Hornet, the Incredible Hulk, Fantastic 5, Iron Man and other super heroes, many of whom have been made popular through a variety of comics, movies and television shows.  However few people, up until now, knew anything about I-Man, a Jewish Indian superhero living in Seattle, Washington.  In the year 2011, I-Man was ten years old to most people who saw him only through their eyes, not really using their inner senses, although he was actually well over his 500^th year on earth.  I-Man was a very unassuming young man, attending a Jewish day school, along with his sister Sophie, in Seattle.  He stood about five or so feet tall, had straight black hair and brown eyes and was dark in complexion due to his native country.  From his outward appearance, one would never think of this young man as anything resembling a super hero.  But, most people don’t look too deeply at others, only making judgments based on outward appearance and not necessarily on what is really inside of a person.   For further information on I-MAN please contact Michael Rosenkrantz, who is the official I-MAN biographer.

Opening a Letter

Opening a Letter

As usual, one recent morning while at my NGO CSRC in Dhapasi, I went to a small fruit shop to purchase breakfast.  I picked up a mango and an apple and when I tried to pay, the owner started saying something which I couldn’t understand.  I asked an adjacent shop owner for help, but he didn’t speak any English.  I tracked down a man who could help me and he explained that the fruit shop owner was indicating that last week I had overpaid and that today’s breakfast was free.  I walked away with a huge smile and a special start to my day with a new feeling of love for Nepal. 

The previous day I had gone to Boudhanath with an American friend, who had contracted polio as an infant.  Dan was visiting Nepal, with another American athlete, Greg, a contingent from Wheelchair Athletes Worldwide (WAW), making a donation of sports wheelchairs and conducting two clinics and a tournament for 60 Nepali wheelchair athletes, children, men and women of all ages.  At Boudhanath, Dan used his titanium crutches to get around as we met many people including a monk using wooden crutches.  Dan gave a small donation to the monk who told him that this would bring good karma. 

On previous visits to Boudhanath I had noticed piles of prayer flags waiting to be burned and was wondering who I might request these from.  On this day, I asked, a security guard if this was possible and he subsequently spoke to a manager.   I explained that Dan was from California and wanted to bring some prayer flags to the States.  The manager obliged by having the security guard provide some hanging prayer flags.  He also gave me a strand which will be brought to my son’s ashram in California.  The manager then unlocked the main temple for us.  Both Dan and I were taken in by these acts of kindness but it somehow felt greater, knowing that the prayer flags which had been hanging at Boudhanath would make their way to California, a small but somehow important connection.  

As I wrote in my May column, I was involved during the month with facilitating a wheelchair sports event involving civil society, corporates and the private sector.  The three days were a success on many accounts as primarily witnessed by the smiling faces of the wheelchair athletes, their friends and family, spectators and the volunteers. 

One of my good friends, Bishnu of Nature Trail Travels & Tours, Trekking & Expeditions provided me with an analogy relating the clinics/tournament to an envelope, and how so many people read the outside but only the receiver sees the inside.  Given that the three day event was developed through a range of partnerships, I found this analogy to be quite compelling.

It is often very true in life that we only see what appears on the surface, and that random acts of kindness, everyday events, go unnoticed.  In terms of the wheelchair sports event I can safely say that many persons and businesses behind the scenes did most of the work.  Bishnu selflessly provided transportation for Greg and Dan, inviting them for dinner and generally made them feel, as if, part of the Nepali family.  DRAGONAIR provided a huge donation of transporting the wheelchairs at no cost from Los Angeles to Kathmandu without any word of wanting/needing publicity.  The International Collage of Hospitality Management (ICHM), although I had asked them to initially provide 50 meals, ended up providing upwards of 100 meals and had 10 students volunteering at the event working from early morning to late into the afternoon.  All of this was done as an in-kind donation.

Most of the donations were conducted with little publicity, except for having a logo on a banner or an ad.  Naysayers might say that nobody does anything for “nothing” and to some extent this is true.  Many times a business doing a good deed is looking for free publicity, which in terms of CSR makes sense. Never-the-less what I generally found was an overall desire to help. I would also venture to say that it is the little guys, those in the background, who really made this particular event a success.   

The little guys didn’t have much to gain as their logos really couldn’t’ be seen and were at the bottom of everything.  Also, the general lack of an audience didn’t help/serve their business.

Corporate Social Responsibility (CSR) is about partnership, but these connections have to come from the heart to have true impact.  I would never fault a corporate for entering into a CSR partnership for wanting to advance their business objectives, after all this is what CSR, in my mind, needs to be truly about.  The place where CSR however often fails is that it is only about the business objective and not about the real reason as to why CSR is being conducted, e.g. advancing the needs of Persons with Disabilities and creating more inclusion, keeping children, especially girls in school, developing livelihoods opportunities to get people out of poverty.  But this is an education process and will take much more time.

I want to end with one more story about the inside of “a letter”.  When I came into the office today I was speaking with my friend who although she had wanted to come to the wheelchair sports event texted me and said that she was dealing with a person who had had a heart attack.  When I asked Janita what had happened she told me that her carpenter had called her because she was the only person that he knew who might have some money to help.  Janita was able to get the money together from a number of people to thankfully save the man’s life and if she hadn’t been able to do this, the man would have been turned away by the hospital. 

I will always try to open the envelope to determine what is inside and to truly find out what is happening; appreciating the privilege that I have in living in Nepal. 

Breaking Barriers-Haruwa Charuwa

Through my volunteer work at CSRC I was recently able to interview a number of Haruwa/Charuwa (mostly Dalits), who were in Kathmandu to advocate for their rights with policy makers.  The group included four men and five women, primarily with the last name of Ram or Sada from VDC’s in Saptari and Siraha Districts.  The majority of the group were illiterate due to lack of educational opportunities, circumstances related to discrimination, land-poor and lack of funds.

The International Labour Organisation (ILO) Convention Nos.29, 105 and 182 prohibits forced and bonded labour including child-bonded labour.  The Government of Nepal has ratified ILO Convention Nos. 29 and 182 and has passed its own legislation. However,a substantial numberof rural individuals and families are still compelled to works as semi-bonded labourers. Lack of capabilities and access to alternative sources of livelihood, children deprived of a school education due to having to take over their family’s generational debt, debt bondage at exorbitant interest rates, allowing no possibility for payback and lack of citizenship papers are just some of the issues which perpetuate poverty and the practice of a bonded agricultural labour system.  Most of the Haruwas have no land and  have settled on a landlord’s land,  which is another reason as to why they have remained as bonded.

The Government of Nepal formally abolished the Kamaiya Labour System on 17 July 2000 and had enacted the Kamaiya Labour (Prohibition) Act 2001 to prevent and rehabilitate bonded labourers under the Kamaiya system in agriculture. This Act includes agricultural labour systems, e.g. Haliya, Haruwa, Hali, Charuwa, etc. under “Kamaiya Labour”.  Haliya/Haruwa and Charuwa are very poor people who are Dalits. They are the most marginalised people with the majority being landless, traditionally considered as “untouchables”.  Often entire families are bound to work as unpaid labourers to a landlord as the father is engaged as a Haliya/Haruwa. 

Today there are approximately 69,000 Haruwa/Charuwa families^[1] in the eastern region of Nepal. 

The number of Haruwa/Charuwas has been gradually reduced but there are still families working to pay off debt.  Most of the Haruwa/Charuwas (approximately 90%) are forced to pay 60% interest to local landlords or money lenders for their survival needs. Wage payments are mainly in-kind (rice) and the cash value is only 50-60 percent of the minimum wage declared by the government. Endemic poverty, wage exploitation, and access to land, health and quality education continue to be major problems.

Siran Sada, 55, Badagama VDC, Saptari told me that his grandfather became a Haruwa, by taking a loan and that his family is still working on paying off this debt, although he didn’t know how much remained.  In light of the fact that the landlord was charging exorbitant interest rates there is probably little personal  hope of ever getting out of poverty.  Siran has a home on public land on a river bank.  He has had opportunity for daily wage jobs, which hardly pays more than 5-6 kg of rice/day, but that the landlord is pressuring to work their land.  Siran was given four kathaland, which is insufficient to grow food for the full year.  He has also taken a loan from his landlord.    Siran has had few options for educating his children and the life of a Haruwa has now been passed down to a fourth generation, through his son. Siran’s family is one of the fortunate few among the group in that his son brought home a mobile phone from India. 

Latar Sada, Sishawani, 63 VDC, Siraha discussed how educating the young might be able to eliminate the Haruwa system, but he also said that he has insufficient resources to send his children to school and that he doesn’t have enough food for his family.  He indicated that children have to leave school early due to discrimination, e.g. non-dalits were provided with new books, while Dalits were given old books, or the fact that Dalits had to sit in the back of the classroom.  But it is also a question of having the money for exam fees and stationary items and although schools are advertised as free, in fact, there are costs.

Sonawati Sada, 34, Hanuman Nagr, Siraha  had borrowed NPR 4,000 from her landlord, but has had to borrow more than NPR 40,000 from six money lenders who charge 60% interest rates for medical treatment for her and other family members.  If the family doesn’t pay anything they will get evicted but   some of the male family members have gone to India for temporary work in order to pay something towards the loan.  Sonawati has three daughters, with the oldest, 12, taking care of the family home meaning that she is no longer in school and will have little livelihood opportunity. 

Rajaya Debi Sada, 44, Madhupati VDC, Saptari,lives on village government land in a family of nine members.  Rajaya was married at 17, neither she or her husband attended school, her father was a Haruwa and she married a Haruwa.  Rajaya has four grandchildren, her son was 18 when he was married and his wife was 16. 

In total all felt that being a Haruwa/Charuwa was not fate, that it was  man-made.   When I asked the group how to resolve the issue some talked about the government exempting the loan and providing social security for medical purposes.  Gulab Debi Ram, 45, Haripur Saptari told me that the government should providing land for housing about one katha plus additional land based on family size in order to grow 12 months of food. 

How does the question of  elimination of Haruwa/Charuwa truly get addressed, in order to provide opportunities and get people out of poverty and into the mainstream?  How do we ensure that children are not born into a life without much hope, only because they were born to someone with the surname of Sada?  Why can’t land be distributed, based on generations of tilling and also paying a fair wage for a fair day’s work?  Why is it that some must remain impoverished and not share in what we all hope and dream for? 

Although Haruwa/Charuwa has been organised by CSRC and the National Land Rights Forum (NLRF) which has included demonstrations, rallies, sit-ins, submission of demand letters, and meetings, a number of times with high government officials, there has been no proper response.

At some point in the distant future the vision of CSRC, A Nepali society where everyone enjoys a secure, free and dignified life, might become reality, but until that time we need, even in small ways to give hope to people like Rajaya, Siran, Latar, Sonawati and Gulab and their families.  It is up to all of us, government, civil society and corporates to work collaboratively in making a bright future for all Nepalis. 

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[1] ILO Unpublished Study 2009-Haruwa/Charuwa