One of a Hundred Stories

Dr. Harrison in 2006

Dr. Harrison in 2006

I have a hundred stories for a hundred lives lived just within this lifetime.  In this story I am the Founder of Childlife Preserve Shishur Sevay, a model of inclusive non-institutional care for orphan girls previously housed in a government institution, having already been rejected for adoption.  Some have severe disabilities.  All carried wounds, some visible, some buried deep within their memories.

This story began when I was 17 years old. I’d written an essay for school about “The Meaning of Life” in which I saw myself acquiring the education and skills to one day care for orphans in need.  I had just seen some pictures of Korean orphans when a friend returned from the war.  Something clicked; something that has lasted a lifetime.

I adopted my Indian daughter from Kolkata in 1984 and raised her in the US. That is my connection to Kolkata, a very personal one.  Kolkata is family. I also have an older daughter to whom I gave birth.  I raised both them as a single parent.  All my stories have twists and turns to them, all 100 of them.

In 2000 I decided we should visit Kolkata.  I had just been through breast cancer and didn’t know how long I would live.  I had also wondered what happens to the children not adopted.  I knew India needed to provide for its orphan children and not just ship them abroad.  When we visited, and in subsequent visits I made, it was clear that mostly these children languished.  I also realized that there was little hope or expectation that anything really could be done for them.  The phrase I kept hearing was, ‘Nothing Can Be Done.”

I sold my house in 2006.  My younger daughter graduated from Barnard College and the older one from New York Law School and I left for India to start Childlife Preserve Shishur Sevay.  The Society received its registration in June 2006.  We received our License in January 2007 and 12 girls were sent to us by Order of the WB Child Welfare Committee for care rehabilitation, four of them with profound disabilities.  I realized quickly that what the children needed most was a “mother” at home checking their homework at night.  I also learned how much they needed each other.  Bonds of genuine love grew between the abled and the children with severe disabilities.  I am mother to them but their strength and security is also in their connections to each other.

Shishur Sevay is not well-known.  I used to refer to us as a stealth orphanage.  Some of that was because I couldn’t stretch myself or our resources any farther, and also because it was hard for me to keep hearing people say it couldn’t be done.  In my relationship with the government I was simply a nice lady from America who liked children.  I shed the titles, roles, privileges of my earlier life.  I also endured death threats and all the other obstacles to creating something good in the face of a culture of mistrust and cynicism.  I needed time to learn about these children.  I understand why people felt nothing could be done, because some of these children are the first to tell you not to bother, that nothing can be done for them. I needed time, time to think, to learn, to try approaches that worked or sometimes didn’t work.  The children needed time, a lot of time, a lot of safety and protection, and a lot of support as they began to risk “trying.”

Ten years later Shishur Sevay is a shining example of what CAN be done.  The girls are thriving.  Two are studying for Class X Boards.  Shishur Sevay is a leader in inclusive living and inclusive education.  We have caught the attention of researchers at Vanderbilt University and have been studied as a unique case of inclusion of abled and differently abled.  We created our own school Ichche Dana Inclusive School, as after six years we gave up on outside schooling for our children.

We are leaders in advanced communication technology.  We were among the first in India to use the Tobii Eye Tracker for our girls with severe cerebral palsy.  They are able now to communicate with us using their eyes to control the computer.   For them and for us this is a profound life changing experience. Our girls are showing what can be done.  We are doing it IN India so that the girls have opportunity without the loss of their homeland, language, culture, heritage and religion.  In the first week I showed them the map of India and began to teach them that they are Indian, that this is their country, and that they belong.  Although I am American and a catalyst, we are strong because of our Indian staff of teachers, caretakers, accountants, administrators, and Board.  Each year we have passed our inspections and the government has thanked us for our efforts.  India gave me the gift of my daughter, who lives happily in the US.  But I am like so many fortunate Indians who want to give back for the gift I have received.

Our infrastructure is strong.  We have received the GuideStar Gold Seal 2017 for transparency of our records, a goal from the beginning.  Our records and processes are open.  We want people to understand what we do and how we do it.

What must be the next part of this story?

  1. Establish lifetime care, inclusive and inter-generational for those who cannot live independently
  2. Establish Shishur Sevay as a model of inclusive care in the spectrum of alternatives to institutionalisation
  3. Conduct training in inclusive living and education in the community and within the professional community
  4. Assist in the creation of other homes based on the model of Shishur Sevay but adapted to the character and needs of the community
  5. Inspire hope and dreams by evoking positive inclusive experiences with the differently abled
  6. Contribute to the building of an Inclusive India

For this, we are no longer stealth, and I am no longer quiet. I am here to tell you what I have learned in raising these abandoned and rejected children.  I will share what they have taught me, what I have learned.  And I will share my adventure of constant growth and emergence.  I’m back.

We are here. We are building an inclusive India

2017: We Are Here. We Are Building An Inclusive India

 

 

 

The Sun Comes Up on Shishur Sevay

 

SS Logo trim

Shishur Sevay, on 14 June 2016 celebrated our tenth anniversary since the founding/registration on 14 June 2006.  And the logo we had been seeking, suddenly appeared, as a Golden Sun Rising.  It must have been a part of me all along,  a source of strength and light I hadn’t yet recognized.  TEN YEARS!  It is a good time to reflect on the journey, how we started and what we have accomplished.

Our intention (achieved) was to create a replicable model of inclusive non-institutional care or orphan girls, some with profound disabilities.  From the time I adopted my younger daughter in 1984, I had wondered, “What happens to the children who are not adopted?” What is India’s policy and plan for those children?  Thus Shishur Sevay was created to ask first: Who are these institutionalized children; what are their needs: and how do we meet them?

We received the children by Order of the West Bengal Child Welfare Committee.  They had been lost, abandoned, and living in government institutions.  They had been interviewed/examined, and rejected for adoption.  These were girls with no parents, no extended family, no community.   Some lacked names

What were their conditions?  Some were ill when they came, with malaria, skin infections, malnutrition, bleeding gums, and severe dental problems.  All had scars, from ropes, knives, burns, and tales that went with each wound.   Some had profound disabilities; with others we discovered their conditions over time.  Our girls collectively had:  Cerebral Palsy with Spastic Quadriplegia….Autism… Seizure disorders…  Visual impairment… Hearing loss,… Cognitive impairment… Down Syndrome…. Microcephaly… Stroke, Post  Meningitis and Encephalitis, Mental Health Difficulties: Depression…, Psychosis… Bipolar Disease…Impulsive Behavior Disorders, Sexual Aggression, Eating Disorders, Suicidal behavior…PTSD…Delayed Development

And then there were their spiritual wounds of believing they had been abandoned by God, with death seeming to be the only possibility for ridding themselves of pain.  “Why did God give me this life?  Why did God make me live?”

For our tenth anniversary, each girl was presented with a Certificate:

Words of Appreciation for Coming into Our Lives:

You came into our lives so we could care for you but you have taught us so much we would never have known. We have been on a journey with you, where you have shown that out of pain, can grow compassion, confidence, curiosity, discipline, learning, love, responsibility, and vision.  You have embraced the modern world without losing your passion and connections to the language, culture, heritage, and religion of your ancestors.     

Each of our staff received a Certificate of Appreciation, the teachers, admin, our 24/7 Guards, our Indispensable Bijoy, and the childcare workers, the massis, all of whom give above and beyond their “jobs” and without whom we couldn’t be what we are, the children could not thrive as they are doing.

Shishur Sevay today excels in:    

  • Advanced Communication Technology: First in India with Tobii Eye Tracking Device allowing our severely disabled children with disabilities to “speak” via computer.
  • Inclusive Education: Ichche Dana Inclusive School based upon individual needs and adaptations for mixed classes with the more abled children.
  • Inclusive Living: the abled, and those with disabilities live together, sharing common space for activities, TV, Prarthana, sleep, and all celebrations.
  • Inclusive Dance: Using different equipment and harnesses allowing severely impaired children to join in the rhythm and movement of dance. A public performance on You tube: Shishur Sevay: Dreaming Wishes for Prince Dobu.
  • Research and Training on Inclusion: Active teaching program including vocational training for our non-literate Girls in working as assistants to special educators. Current research project with Vanderbilt University related to Inclusive Education.
  • Academic preparation for more advanced girls preparing for examinations from NIOS, National Institute of Open Schooling.
  • Strengthening the girls’ appreciation and practice of Indian Language, Culture, and Heritage and Religion.

What’s Ahead?

  1. To establish our model of inclusive living as the standard of care for orphans, abled and with disabilities.
  2. To expand our model of inclusive education by creating a community school and by providing training in inclusive education.
  3. To insure lifetime inclusive care and living for those who cannot live independently.
  4. To continue to demonstrate the capabilities of these disenfranchised children and to give them voice, namely to show what can be done.

We have just begun.

Changing Bharat 075Final_W.jpg

 

Today I Bathed in the Ganges

Tuni at Rest.

Tuni at Rest.

Today I bathed in the Ganges.  Tuni Harrison died on the 14th of August 2013.  She had heart surgery the day before, but her heart gave out.  Today, three days after her death, Bijoy and I went to the river, with a Priest, and gave rites to send her on her journey.  We offered clothes, food, milk, flowers, incense, and so many prayers.  And then we immersed ourselves in the river three times, and pushed water out into the river three times, and I cried because I want her journey to be wonderful while I also want her back in my arms.  I accept, but I am bereft.  Even as I send her off to be with the Gods, I also call for her to come back soon.  I’ll be looking for her.  I will always be looking for her.  When she came into my life I felt as if I’d always been looking for her.  When she died I felt that I’d lost someone I’d always known.

Souls sang to my heart,

The winds taking them afar,

My nestlings flourished.

Yes this is true.  My children, my nestlings, flourished.  And when they were grown, I went looking for where the winds had taken the others.  Tuni came home to me, and now she is gone… Like a little God, she came and filled our hearts, and the hearts of so many around the world, and then she left….. with the slightest smile on her sleeping face.

I am raw.  My life is raw.  I am immersed, as if in the Ganges.  Tuni came for a purpose, a light and a gift, but I think we are only at the beginning of her impact in our lives.

In the days ahead I will write and post pictures of the last seven days.  It was just a week ago that I took her for an evaluation and the doctors decided we could not wait for surgery as her blue spells were increasing, and medication was not helping.  Here at Shishur Sevay we arranged for an oxygen concentrator and bought a pulse oxymeter.  It was frightening when she would turn blue, and cry and then go limp…..

Today I bathed in the Ganges.

Coming out from the Ganges

CWC (Child Welfare Committee) Finally Coming For Inspection

Our last contact with CWC is described in the post “Foes Into Friends” https://shishursevay.com/2013/04/03/foes-into-friends/

Before that we were told we would be investigated for violation of child labor laws because of a complaint by an adolescent who had become too violent for us to manage.    On Friday, Seema Gupta, our Board Vice-President stopped in at CWC to find out the disposition of the girl who had made the complaint against us, as she was still officially on our roll.

Then the officials asked Seema, “Would Madam please take more children?” and Seema explained that we have no room or resources for more.  Then they asked, “Would Madam build a home for boys with disabilities?  We have the funds!  We would help her do it!”  Seema said they had to visit first because only then would they understand what Shishur Sevay is.  So they are coming tomorrow.  We will pick them up and bring them and then take them back.  Seema will take the day off from work.  The girls will stay home from school.  But it’s not about what’s wrong with us.  It’s about their wanting help.  They do remember when I brought the boys from Aunty’s Home and they had no place to put them.  They still don’t.

Would I do it?  I will if I can make it good, as it should be, and inclusive in some way, and with lots of recreation.  I think that’s one of the worst problems for children with limited mobility and other disabilities.  They don’t get to wear themselves out with fun, exercise, etc.  I want a pool, enough for them to experience weightlessness…..

I’m a dreamer.  I’m already planning it in my head, thinking about building plans and accessibility.  I already looked up construction costs for commercial buildings….  I would have two wings though, for boys and girls, but for the lower ages I’d keep them together.

I want to start with an advisory group of people with disabilities….

I’m so glad I put down the outside tiles.  I’ll have more pictures later on but instead of ramps looking separate, they just blend in, and look like rolling surfaces.  Before we chose the tile, we had Sudip try out several, with water over them, to see which ones gave his crutches the best grip.

The “client” should always be the end user.  Schools should be built to meet the needs of students, hospitals to meet the needs of patients, Shishur Sevay to meet needs as we discover them, and then find the best solutions.

Well, this may all be too much for the people coming from CWC, but I’m fired up and looking for ways and funds to make such a thing happen.  I like the idea of building what is needed, as defined by the community.  But just in case anyone is worried, Shishur Sevay and the life of the girls, of our family will also continue.  This is home, my home and theirs.

Outside feels part of the house now, a nice place to be, to play… safe from slipping.

Ready for School, with her bag and her sister's shoes.

Ready for School, with her bag and her sister’s shoes.

Well, you can see the tiles!  On the left, the black area is Jelly, the dog.  Actually the side there is flat for her bed.  Before we made a bed for her she would stretch out across the entrance, even when someone in a wheelchair was trying to go through.

Tiles going up, across, an down.

Tiles going up, across, and down.

I love what we have been able to do.  I’m looking forward to the visit.  I’ll let you know how it goes.  I’m prepared for the best and the worst.  It’s just how life is.

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