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,

Fumbling Through Raising Funds

I’m stumbling.  I know what I have to do and I’m not doing very well at it.  So I write, with two purposes in mind: 1. It may help me find my way out of the web I feel around me, and 2. I don’t think that fundamentally I am very different from others, and so when I have trouble solving a problem, I imagine there are others out there struggling with the same things.  I just do it more openly sometimes.  The third of my two reasons is that someone else might have some words to help me though this.

My goal for 2015 was to begin serious fund raising, building the future for Shishur Sevay because my personal funds are being depleted and I have to secure the future of the girls.  I’m guessing that none of you reading this are aware of my serious intentions because I think I’ve basically kept it a secret.

“It makes me feel like a beggar, too much like the lady on the street, body bent slightly forward, with her hand outstretched and cupped, saying, ‘Please, for my children, please.'”

To be honest, this is not all fantasy.  Asking for money leaves me open to a lot of painful comments and opinions, and when that happens it feels terrible and words invade my mind and dig and dig and I struggle for the words to pull me back up. Sometimes I go and sit with the kids, especially the little ones, just enjoying their presence, reminding me why I struggle so hard.  The big girls know something is wrong, but I don’t talk about it.  They have no idea that money is a struggle because I never wanted them to. Shishur Sevay is the only stable place they have lived and I don’t want them worrying, and we are in no way desperate, but it’s the long term that has to be secured. I’d like to build an endowment.  I get a small pension and social security.  When I die, those go.  And people think I don’t worry?  I started Shishur Sevay with a plan to raise about 8 girls to independence and I had the personal funds to do it.  All that changed when I saw the four children with disabilities, in the government institution, that no one would take, Rani, Bornali, Ganga, and Sonali.  I looked at them and said yes. That’s what disability does.  It upends plans.  It hijacks the future, but these children are the heart of Shishur Sevay, the heart of who we are, and they will need care for the rest of their lives, and the cost of the care that keeps them alive and full of joy is enormous, even in India.

The big girls do worry about my age and health. Reassuringly they once told me not to worry, that Andrei Dada (my son-in-law) would take care of them.  Yes, Andrei knows their expectations.  He is on the Board of Shishur Sevay, and he and Heather started Friends of Shishur Sevay a 501 (c)(3) in the US.  Cici’s wife Erica created  the website here and Goutami (Shishur Sevay’s first intern) completes that group of incredibly busy people who do it for the children, and also for me. I know that and I am grateful. Andrei is going to run the NYC Marathon this year and raise money for Shishur Sevay.  The secret is OUT!

It hadn’t all started out that way.  I came here on my own and though my children were proud of what I was doing, they would rather I’d stayed closer to home.  But then they came to visit and fell in love with the children and wanted to take them home with them…. And then Heather and Andrei had kids and now my grandchildren skype with my kids here and Heather tries to explain to her daughter how grandma is mother of all these kids, and mother to her mother…… well, these extended families!

I LOVED giving out money when I was at Johnson & Johnson.  Being a donor was an incredible high.  Fortunately I never took it personally as I was thanked, honored, etc.  Later on when I first came to India, I loved being able to give money and time.  Yes, it’s a high.  So it’s also hard for me to be at that other end.  You see when I was at J&J, everyone took my calls!  But now, raising money?  I get left wondering whether I should call again, or let it go, not wanting to bother people, not wanting to be perceived as a beggar….wondering whether I said something wrong, voice too loud, high, strong, deferential?  I wonder if I treated people that way?  I really don’t think so, but I don’t know how it felt to them.  Oddly, even people I helped often weren’t very nice to me, but that wasn’t what I was there for.  If I improved someone’s life, that was enough.

Two nights ago I was talking with one of the girls about how it felt years ago when we had some terrible battles going on here, with some staff successfully creating barriers between the girls and me.  I said it felt terrible, but I never thought to leave because in a way I won anyway.  I got to feed them, educate them, give them a safe place, and I sure wished it had been different, but they had hopes now, and a future….. and that is true.  I did it and do it because it makes me feel good. As for what happens when I’m gone, I think I put it best in a previous blog from 2011 here

I’m the captain.  The ship has to be seaworthy.  The crew has to be able to take over at any moment.  The Board has to be prepared to give direction to the crew.  All this needs to be in place.  It came to me pretty simply this morning.  I have to leave a seaworthy ship with a seaworthy crew, docked in a safe harbor.  I could not “rest in peace” otherwise.

But back to fund raising and the future.  I’m beginning to feel I have to figure out how to protect myself in all this.  Even as I write I cringe at things that have been said to me.  It’s been personal….  Maybe I need to become “A Beggar in Armour!” When I was with Johnson & Johnson I used to get dressed in the morning in my dark corporate suit, choose a blouse from a variety of whites and off-whites, pick out a suitable Hermes scarf, step into my Ferragamo shoes, put on my expensive make-up so I would look natural, face the mirror and say, ‘They think this is me!”  But that was the time I was in my final skill-building for what I have done since, and now, more than any other time in my life, I’m more me than ever, very strong and very vulnerable and I have to manage those contradictions to secure the future of my children.

I haven’t found an answer but I’ve laid out the landscape of the problem…. or rather the seascape.  Like everyone else, I’m a work in progress.

Michelle at the Helm of the Aquarius

Michelle at the Helm of the Aquarius, circa 1970

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