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”

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.

Theater: Laughter at the Expense of Those With Disabilities

We attended a drama, Anubhav, by Ramaprasad Banik, being put on by the Theater Group of Nehru Children’s Museum at the Academy of Fine Arts.  It was presented as a play about the emotional sensitivity of children, and it took place in a school for boys.    I took the five big girls, Kalpana,and Ganga (in her chair).  Seema Gupta, on our Board met us there.  She had friends whose children were in the play, an she had gotten the tickets for us.  She had also clarified in advance that we had one child in a wheelchair, and it was agreed the chair would be next to us in the aisle.

We were on the early side and went right in.  We found our seats in the second row, up to the aisle, but the aisle was so narrow, the chair totally blocked the aisle.  So I moved forward temporarily to the front row and put the chair in front of me, leaving a very wide area for people to pass.

“Madam, you must move.  This (the child in the chair) is blocking the way.”

Me: “Well there is still a lot of room for people to pass, but there is no room in the aisle for anyone to get past.  I have a seat just behind me, with the others.”  He looked back and figured out  we were a group.  I added, ‘We arranged all this in advance.”

“Madam, you can move her to the back of the auditorium so she does not block the aisle.”

“You mean where she can’t see as much?  That wouldn’t be nice to treat her that way just because she is in a wheelchair!”    Iwas being as sweet, dumb sounding, and immovable as I could.

“Oh yes, well then move her over to the end of the row, by the exit.”

“Oh my, but then she can’t see the full stage.”

All this happened over about ten minutes, with different men coming to replace the ones who had been unsuccessful in moving us.  Seema Gupta was wonderful in trying to help negotiate, knowing I wasn’t moving, and as upset as I was. I talked to Ganga as this was going on.  I asked if she was OK, and I said we were doing this so people would have better places for people who needed wheelchairs.  She smiled, grinned, and seemed to get it.  I asked again if she was OK, and she grinned.

A compromise was reached, wherein Ganga would be in the front with me before the play and when it started I would move back into the second row seat on the aisle and she would be in the aisle next to me.  All I could think of was the fire hazard of this arrangement now that we WERE blocking the aisle.

The play was in Bengali but I’d heard that it was about emotional sensitivity, and there was an orphan in it… and I could follow some of what was going on.  There was slapstick… I kept noticing that.  Early there was slapstick about a boy who couldn’t speak.  He would open his mouth and words wouldn’t come out.  The others would yell at him to talk.  His mother hit him over the head.  The whole place burst into laughter, including Ganga.  But then Ganga couldn’t stop laughing, couldn’t get herself under control.  Because it was fastest way, I picked her up out of the chair and left through the exit.  I sat with her in the lobby, just soothing her.  She calmed down.  She was upset.  We just sat, her head against my chest.

The theater group director happened to come by and said hello.  He had no idea what had gone on.  He was proud of the production, and said it was good our children were here “because it’s about these things.”  He talked with pride about his school, and the boys… (he then quickly added girls) who were in it.  But the play was a boy’s play.  There were NO good parts for girls.  They either were girls who giggled, or mothers of the boys.

I tried once to carry her back in but she started uncontrolled spasms of laughter as I opened the door.  But during intermission we did go back in.  I carried her in and sat with her on my lap, which is where she wanted to be.  Usually she would rather be with the big girls.  She didn’t laugh.  She was somber.   In the final scene the boy who can’t talk was being goaded by another boy.  Just another happy ending.

I just kept thinking how glad I was that Sudip wasn’t there, my Secretary with CP, who lives it all.

A few days ago we visited an NGO, which is part of an international group that serves the poor and those with disabilities.  Sudip had visited them seven years before as part of his activism with Ankur in Disability Awareness and they remembered him fondly.  We visited all their buildings and grounds and then they took us to the meditation room, a beautiful architecturally designed brick structure, but inaccessible to those with disabilities.  This had not changed in the seven years since Sudip had been there before.  I asked what they did with people in wheelchairs, whether they just carried them in.  “No, they sit outside the building.”

From inside this beautiful meditation room, I took a picture of Sudipendu Dutta standing outside.

Sudipendu Dutta on crutches standing outside inaccessible meditation building

Sudipendu Dutta Outside the Ashram’s Inaccessible Meditation Room

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