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

 

To Not Feel Alone in the Universe

MH Speaking 074

Remarks by Dr. Michelle Harrison, Founder of Shishur Sevay, invited speaker at Conference “Empowering Disabled Persons with Accessible & Assistive Technology” organised by the Associated Chambers of Commerce and Industries of India in collaboration with the Ministry of Justice and Empowerment, held at Le Meridien, 11 February, 2016. Invitees represented banks, PSU’s, and corporates. Dr. Harrison was the only speaker from the NGO sector as Shishur Sevay was the first NGO for disabled children in India to utilize the Tobii Eye Tracker technology for its most severely affected children. This technology allows a child who has no ability to use her hands or feet, nor does she have a stable head, to be able use her eyes on the computer screen to communicate with others. ASSOCHAM invited Dr. Harrison to speak about the “on the ground” reality of accessibility and assistive communication technologies.

Good Afternoon

COMMUNICATION and ACCESSIBILITY are the themes of this conference, but Why is communication so important? What is its function?

  • To not feel alone in the universe as an individual
  • To have some ability to control your environment.
  • To feel a part of some community of other people

The person who cannot communicate is locked out of these basic needs. For those whose only means are their eyes, even that technology has now helped to resolve. For those who have no mobility, accessibility is required or they cannot be part of the community of other people. Communication and Accessibility, the common human needs.

My relationship with India began in 1984 when as a single parent I adopted an infant from Kolkata and raised her, along with my older daughter in the US. But I always wondered, “what happens to the children who are not adopted?” What does India do for these children?  What is India’s policy for its lost, abandoned, abused, disabled, and un-chosen children? As my daughter grew and we visited India, I kept hearing the refrain, “Nothing can be done.” I KNEW this was not true, but I also realized it wasn’t even in the imagination of people what and who these children could become.

In 2006 my one daughter graduated from University and my other from Law School, and I left for Kolkata. I had sold my house the year before and with my savings and pension I was determined to show what could be done. Shishur Sevay will be ten years in June 2016. We became what we hoped to be, a best-practices model of inclusive non-institutional care for orphan children, some of whom have profound disabilities.   We are very replicable and relevant as India moves in intent and action to improve the lives of these children. From the beginning, we lived inclusively; two years ago we established a small school Ichche Dana Inclusive School which we want to expand into the community. In December 2015 we became the subject of research on inclusivity out of Vanderbilt University because of our unique history and establishment of inclusive education. We have begun our own Research and Training Center, the Tuni Harrison Research and Training Center.  It is named after a baby with Down Syndrome, found under bushes, and brought to us by the Child Welfare Committee.  She died in heart surgery, but she died loved, with a family, and with a name. Her portrait sits beside the Gods.

What is our secret? We started with the children, understanding who they are, and what they needed. That’s how we became inclusive, as we had little room, and they liked being together.  They needed each other, the abled and those with disabilities. How did we become leaders in advanced communication technology? Ganga, a profoundly disabled but intelligent child was desperate to communicate and all other technologies over the years had not quite worked.  Her fingers were too weak to manage even a special keyboard; her toes flexed in the wrong direction when she tried to use her feet on a keyboard;  Her neck couldn’t hole up her head enough for her to manage a head pointer.  Deciding eventually on the purchase the Tobii Eye Tracker was a leap of faith on my part as there weren’t any in India to try. I didn’t even try to look for a donor because I didn’t know if it would work.  I dipped further into my dwindling savings, as I have for all of this.  We have just ordered a second Eye Tracker so the girls can communicate directly with each other.  Ganga, who came to Shishur Sevay at 4 years of age, weighing 7 kg has been our leader.  Sometimes I think she is an old soul with a challenged body, determined to teach us how to get it right.

Why Inclusive Dance? Well, the old soul insisted she wanted to dance!  Dance is an ancient way of communicating and of being together as a community… It requires music, rhythm, synchrony, and a certain freedom of movement which is limited by being in the wheelchair. Ganga, with her spastic quadriplegia wanted to dance with the others. So we called Ferdinand Rodricks, who came from Mumbai to help create a harness based on the model of the Kaye Suspension Harness.  We later made a second one, and the girls can move and sway as the others hold them up.  Now we  want to incorporate the Kaye Suspension walker into our dance, if we can get the funds and figure out how to get it to India, or find someone in India who would make one similar.  We have done several public performances of our Inclusive Dance, and we have a channel on You Tube.

As for physical accessibility, at Shishur Sevay we had to find a way to refit as much of the house as we could, and to do it in an attractive way. People coming in don’t even realize that the contours of the entrance are because we needed accessibility. It was a necessity so we figured out how to do it, always being aware that our purpose was to demonstrate what could be done.  

What are the messages I want to leave with you?

  1. We have to change our mindsets. My initial thought when these 12 girls came, aged about 2 yrs. to ten, was that I had to separate the children into two groups by those with disabilities, and those not with disabilities. Why? That’s what you do! The problem is we had very limited space, AND the kids enjoyed being together. We were watching TV together, eating together, having evening Prarthana together and it was working fine.  When interviewed for the research recently they each said they wished they could understand better what their sisters wanted.  Three of our older girls want their careers to be around special needs children.
  1. We have to change society’s mindset with respect to acceptance of people with disabilities in public spaces. We won’t have accessibility until people want it, or until it becomes mandatory by law and enforced. In Kolkata there is almost no accessible space, no accessible buildings. ECO Park is a 480 acre recreational park opened in December 2012. The land is completely flat. There is only one accessible entrance though, at the far end, almost 2 km from the first gate. How hard would it have been to make all the gates accessible? In truth, people in wheelchairs and others with disability are not really welcomed.

There is ironically one truly accessible place I know in Kolkata, the South City Mall, where entrances are graded, there are lifts, clean accessible toilets, and for the abled children, the escalators which are almost as much fun as amusement parks.

  1. Processes and structures to improve accessibility, to develop better products and advanced communication cannot be dependent on market forces and the private sector. There is very little market for them and that will not change until we come to value their lives and want them to be among us.  Entrepreneurship must be encouraged and supported, but not with any expectation of immediate financial returns.  Innovations and implementation must be supported by government and public private partnerships.
  2. Solutions have to begin with input from the end users and those around them. Sometimes inventors make a product and then figure out who can use it. But when you start with the user, everything changes. The core of your ideas may be the same, but the presence of someone in need, a need you see and understand, can result in your tweaking it slightly differently. Hang out with the potential users… informal time…. they might not be able to tell you what they need because they haven’t yet dreamed it either. Include family members and caretakers…. Help them all to imagine.
  1. Include the girls and women in the implementation of technology for those with disabilities!!! They are the ones who provide most of the care. If the technology is only in the hands of men, the times it can be used will be very limited. It takes a change of mind set for mothers to be included in the technical aspects of assistive technology. Women need skills in dealing with electronics, taking computers apart, building switches, hooking up batteries. If we are trying to reach the “underserved” we have to include the women because too often they write themselves out of the picture. “NO, I can’t,” is as common as, “It can’t be done.”
  1. We have to be able to dream. The Indian educational system punishes the dreamers, the challengers to status quo, those who question… Students need to be able to experiment, to go off syllabus. Rote memory cannot produce inventors or inventions. Shishur Sevay was a dream but it required a lifetime of skills to make it right and make it better.  Dreaming isn’t enough; making it happen is a harder challenge. I’m a visionary. I look at something as it is, and then I imagine how it could be even better, and with Shishur Sevay, I built the better model. We have to be able to dream.

What do those with disabilities (and the rest of us) need?

  • To not feel alone in the universe as an individual. They need to communicate, which often requires technology which is rapidly appearing.  Now it must get to those who need it.
  • To have some ability to control their environment.  Whether it is to turn on a light, choose their work, or press a call button – without some capability they are helpless, and alone.
  • To feel part of a community of people by going accessible places, like schools, government offices, parks, public transportation, or even just being able to take part in online communities. When our orphan children first arrived they thought India was about cricket and football. The first thing we taught them was that Shishur Sevay was their Home, and India was their Country.

For those with disabilities to have what basically we all need, WE must

  • Want to have them among and beside us,
  • Listen to their dreams,
  • Walk in their shoes, or AFOs,
  • Take risks,
  • And let ourselves dream.

Then we can do anything!

I thank you all for your time and attention.

Dr. Michelle Harrison, New Delhi, 11 February, 2016 {shishur.sevay@gmail.com}

 

 

Cats Welcome in the Park; Ganga not welcome.

 

Cat welcome, Ganga not welcome

Cat welcome, Ganga not welcome

The girls went to a local park yesterday, a large scenic walk around an artificial pond having a boat and ducks.  Seema Gupta our Board Member, and recently retired Joint Registrar of Calcutta High Court took them.  As they were walking around the park the “caretaker” came up and belligerently said they could not take that car (the wheelchair) on the walk as it is for people walking.  Seema took him on, full force demanding to know who he was and who had given this order.

The walkway that surrounds the pond.

The walkway that surrounds the pond.

The Big Pond. The walkway goes all around the pond.

The Big Pond. The walkway goes all around the pond.

After their walk around they went to the local ex-councillor’s office, as it is near to the part, and complained.  He called the current councillor, who said we could use the park, and that was communicated to the caretaker.   Then they stopped at another park, right across the road from this one but the wheelchair can’t get in so Seema waits outside guarding the chair, and the girls go in, carrying Ganga.

Their favorite bench swing in the park.

Their favorite bench swing in the park.

Turnstile gate the wheelchair can't get through.

Turnstile gate the wheelchair can’t get through.

 

 

 

 

 

 

 

Well, it turns out that the day before, the same caretaker had gone up the one of the girls who had put Ganga on the bench swing and asked her why she was putting that big girl on this swing as it was only for babies.  She had argued with him and refused to take her off, but had not told us. So this was the same man who then tried to stop us yesterday from using the park with the big pond.   Although at the moment we have “permission” to go, no one really wants to, and Ganga says she is worried.  She has been noticeably upset.

Well, there is more.  There are only three parks in the neighborhood, these two, and the one very close to our house, right at the start of our lane.  I wrote about that park 11 September 2011:

It was a long time ago and we successfully occupied the park, but essentially it means that we have had trouble with acceptance at ALL THREE neighborhood parks.  This morning I went out early and took all these pictures.  I visited our close park and took a picture of two young men sitting on one of the swings we had been told there were ONLY for children, and clearly not our children.

Our closest park, with two young men sitting on the "children's only" bench swing they didn't want us to use.

Our closest park, with two young men sitting on the “children’s only” bench swing they didn’t want us to use.

Coming home to Shishur Sevay, our safe place

Coming home to Shishur Sevay, our safe place

 

 

 

 

 

 

 

 

Coming home to Shishur Sevay, our safe place for now.  Soon I will write more about our plans to move.   We really need larger facilities to have the programs we plan.  Now we are 14 kids and me living in about 1500 sq. ft,  and running a school, and office, and rehabilitation, and many plans for the future.

In the meantime though, In 3 hours Anjali Forber-Pratt will be arriving from the US and we will make this community take notice of disability rights.  Ganga is very excited and we talk about Anjali Didi and Ganga leading our occupation of the park with the big pond,

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