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

 

 

 

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}

 

 

Ganga Speaks With Her Eyes!

Ganga with her Tobii eye tracker

Ganga with her Tobii eye tracker

Ganga’s eyes focus on the screen, then on the boxes, and when she holds her gaze long enough, the words are said via digital voice.  This is her first day working with the materials prepared for her.  But given her dry humor and tendency for being naughty (or cheeky as our Australian friends say) this could well be what she intended to tell us. “Do something else, bored, bored, bored,” became her first words.

Buying the Tobii was a leap of faith.  I’ve had my eye on this type of technology for her.  She has worked with switches, head pointers, and specialized keyboards, but always hampered by her severe motor limitations. The eye tracker offered the ability to operate  windows  in addition to the specialized communication software.  She could eventually learn to surf the web, without ever having to use her hands or fingers.  This version of eye tracking, originally used for gaming was said to be less sensitive to head motion.   Buying without any chance to try it felt reckless.  But I kept coming back to Ganga’s current and future needs to break out of the isolation of her disabilities.  Among all our girls, she is the one who tries the hardest, loves to study the most,  cares about geography, history, and news, and understands humor and sarcasm.  I placed the order with the company in Mumbai that sells the product made in Sweden.  Apparently we were their first customers for the Tobii PCEye.

Soon after we purchased the Tobii but before it arrived, we had an amazing group of volunteers from Equal Health in Australia, all connected with early childhood education and disabilities who came to help and guide us for a week.  Their leader Kristy Tomlinson contacted her friend Amy Litton of Independent Living Center in Nedlands.  Amy Litton is a TRAINER in the use of the Tobii as well as other assistive devices.  She and her team enthusiastically offered to help Ganga.  Below is a Skype screen shot of speech pathologist Amy Litton and occupational therapist Jessica Rigden learning about Ganga.

Amy Litton and Beth on Skype talking to Ganga and me about the Tobii

Amy Litton and Jessica Rigden on Skype helping Ganga with Tobii

This is a clearer picture of the Tobii PCEye Tracker, the little black device at the bottom of the screen.  The red dots are where the infared lights connect with her eyes in order to operate the laptop.

the eye tracker on the laptop at the bottom of the screen

the eye tracker on the laptop at the bottom of the screen

This is one of the personalized pages Amy and her team prepared for Ganga.

The partially complete red circle in the

The partially complete red circle in the “I love to dance” box shows that this is where Ganga’s focus is. In the picture below you will see the circle complete and the voice synthesizer will have said, “I love to dance.”

The red circle (incomplete) in the

When the circle is complete, namely when she had held her gaze long enough, the sound will play.

In both the above pictures there is a side bar on the right, representing eye tracker control of mouse functions.  Between substituting mouse functions and using the screen keyboard, the usual Microsoft and internet work can be accomplished.

A keyboard can be called up at any time and operated by eye tracking.  Ganga has already typed GAN and is focusing on the G. The red circle fills as she holds her gaze.

Ganga has already typed GAN and is focusing on the G.  The red circle fills as she holds her gaze.

Now Ganga has already typed GANG and is focusing on the A. The red circle fills as she holds her gaze.

With GANG already written, she adds A.

Ganga's eyes do speak.  Here she is saying that she has done well and deserves a photograph.

Ganga’s eyes do speak. She is telling us that she has done well and now she deserves a photograph.

Good work Ganga.  So many of us are waiting to hear what you are thinking, what you dream about, what you want us to know about yourself, and some day to read the book you want to write. 

Seven Years Together at Shishur Sevay

A few nights ago I dreamed I was trying to put our records together and that required that I establish records on the moon first, which I did, and then replicated here at Shishur Sevay. I kept asking, “How can I explain to people that I had to get this done on the moon first?” I’m working on a blog post about the past seven years here. Maybe that’s the answer as to why the dream.  I’m feeling a lot of pressure, trying to write about what it’s been like, and probably holding back a lot on what it’s really been like. I’ve been to the moon and back…. that’s what was required.  It was cold and lonely and void of vegetation.

Shishur Sevay today is thriving.  It’s glowing.  It’s what I’d dreamed it would be. So here is the blog I was working on before I went to sleep, before I understood I’d been to the moon and back.  The process of building Shishur Sevay has been brutal, but the product is beautiful.

Seven Years Together

A picture of all the girls of Shishur Sevay and Dr. Harrison on her birthday

My Girls of Shishur Sevay and Me

The first twelve girls came to Shishur Sevay in February 2007, so for me this time of year is always one of reflection.  They came with an array of abilities, disabilities, and medical conditions.  All came with scars, emotional and physical.   They all were socially and educationally deprived, and had led lives filled with violence and deprivation.  Then at some point, each had lost everyone and everything: parents, siblings, extended family, and community, and eventually were placed in a government institution.  These are the children I’d sought, the ones considered not adoptable in India or abroad. They had been rejected by adoption representatives before they were sent to me for “rehabilitation” by Order of the Child Welfare Committee.   With adolescence, three of the girls became too unmanageable, with behaviors that put us all at risk. My decision to return them to government care was very difficult, and taken after many attempts over the years at various treatments and therapies, but necessary if Shishur Sevay was to be the safe place it is.  I had not expected ever to have to do that.

This year we started an inclusive school, Ichche Dana Learning Center because educating the girls in outside schools “did not work.”  The girls are beginning to put their efforts back into learning.  There were several factors interfering.  One was their early deprivation that left them far behind their classmates, while they were also older than their classmates.   Science is now giving us information on the effects of this early deprivation.

http://ecceportal.in/index.php/news2/136-more-talking-longer-sentences-help-babies-brains

At school the girls were seen as “different” because of their origins, and they felt different. Teachers lowered expectations; some gave them false high grades because they “felt sorry” for them.  Others ignored them, or queried them about their origins and caste. The Indian system of rote memory left them too frightened to learn anything but the paragraphs they had to memorize and give back, an impossible task when you don’t have the foundations of language, any language.   Ideas of self-discipline, hard mental work, and delayed gratification were as foreign to them as I was..  If work was hard it scared them.   They lived in fear.  It was time to bring them back and start anew, which is what we are doing and so far it is working very well.

Girls taking notes at the botanical gardens.

Taking notes at the Botanical Gardens

doing a presentation of trees of botanical gardens

Presentation about the trees of Botanical Gardens

The girls did a presentation of their work to volunteers from Equal Health,a team of Australian educators who were with us  in January.

Ganga Presenting

Ganga Presenting

Ganga and Bornali both presented by use of the iPad and the recorded script.

This is inclusion.  Everyone is able to learn something and to contribute.  Some of the coursework has to separated by level of understanding and skills in reading and comprehension, but the ideas and subjects and methods of presentation can be done by all.  And our children with the most severe disabilities, even if they can’t join in, they still make wonderful and appreciative listeners.  Everyone has a role.

Our eventual plan is for the girls who are able, to enroll in the National Institute of  Open Schooling which will allow them to sit for Class 10 and 12 examinations. We will send to college those who are able.  We will look at job training for others.  Some of our older girls may need to stay with us.  I’ve promised marriage to those who want.  We talk about dowry because it’s integral to the world they live in.

This year though, I find myself thinking a lot about our girls with the most profound disabilities and looking at the therapies and methods that have and have not “worked.”  The children thrive on attention, especially one on one!  If I were in the US, I’d be thinking about finding teenagers to just play with them, floor play, songs, things I’m familiar with.  I haven’t found that here.  My experience (and I add the caveat that I can only speak for my involvement with families since 2000) is that teenagers do not “babysit” or work outside their families.   Play happens sometimes as “therapy” by professional therapists, but that means it’s a very limited and expensive resource. As for cognitive tasks, my little ones would rather be dancing.

She'd Rather be Dancing

She’d Rather be Dancing

One day I will tell the story of what it took to get here, but Shishur Sevay is a wonderful place now and that’s how the journey must be seen.

Previous Older Entries

September 2017
S M T W T F S
« Jun    
 12
3456789
10111213141516
17181920212223
24252627282930
%d bloggers like this: