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

 

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

Shishur Sevay Welcoming Scrutiny

Screen Shot 2014-10-30 at 10.45.08 am

I read this story this morning.  It’s good that the government wants to improve services and accountability of NGO services to children.  So I welcome this, and I also dread this.  What will be the reality of how this will happen?  Ultimately, will we be certified as “good enough?”  What will be the criteria.  We are a model and we intend to influence government care of orphans and other children in need, including the disabled.  We want to document and report, and be transparent in how this process occurs, if it actually does proceed.   This is the first I have heard about it.  I will report when we hear anything along the way.  I will be open about the questions that are asked of us, and our replies.

Even at present, our records are open.  Is our documentation perfect?  Of course not.  We will improve what we can.  But our children are receiving good health care; good nutrition; education; rehabilitation; respect; discipline.  Our official website http://www.shishursevay.org continues to update all of these and our important documents are being loaded into the site.  Here are the worries I have as we enter into a revised process of licensing:

  • We are under constant pressure to take more children.  I have refused on the basis that we cannot take more without lowering the level of care we give.  We cannot become a warehouse.  We won’t.
  • We do not receive funds from the government.  Such a contract would require us to take more children.  For those NGOs that receive funds, they often arrive 1-2 YEARS late, and cover only a bare fraction of the real costs.  Proper care for children with disabilities is expensive because it is labor intensive.   Otherwise they don’t survive.
  • Inclusion may be a problem in the new licensing.  We have been told more than once that we cannot have “normals’ with “handicapped.”  The rationale from the government was that the “handicapped” are dangerous to the “normals.”  This was told to us at the same time I had established a ZERO TOLERANCE of violence because children with disabilities can easily be silently abused and we had dealt with such a situation here.  So maybe this will be an opportunity for educating and influencing the government about disability and inclusion.

Well, it’s a new adventure, which may or may not happen.  It’s a great idea, more scrutiny, and I really do welcome it.  When people walk through the entrance here, I see their faces change.  It’s not what they expected.  The kids are all around.  Kids and teachers and office staff… all “underfoot.”  My office is always a bit of a mess because if anyone doesn’t know where to put something, it ends up in my office.  It’s also the reception area.  It is shared space.  All doors in the house have windows. Privacy can be dangerous to children and to the helpless and voiceless.

I like “common space”  When I was a kid I used to spend hours drawing house plans.  I studied magazines that in those days had construction plans for homes.  My designs were always the same….. a common space in the middle.  So I guess that makes Shishur Sevay the house of my dreams.  I was a strange kid.  I’m still a bit on the strange side.

A Beautiful Visit From The CWC

A comment posted to my last post, https://shishursevay.com/2013/07/14/cwc-child-welfare-committee-finally-coming-for-inspection/, wrote:

I am a little confused. One minute the CWC folks are confrontational; they want to take you to task for some kind of an infraction, teach you a lesson. The next minute, they want you to help them do their work for which they are paid by the tax-payers. I’ll eagerly wait for the next segment of the story, as will others, I’m sure.

Yes, that’s right.  No, it makes no sense.  That’s just how it is.

From the beginning, I have wanted to work with the government, particularly regarding the institutionalized children. I don’t know why the CWC’s attitude changed.  I do know that currently they are desperate and overwhelmed, and they have always been angry that I wouldn’t take more.

The visit was beautiful.  We did the formal things that are expected.  The girls presented flowers to each guest.  Each did Pranam, the touching of an elder’s feet.   One of the girls presented her embroidery work, framed, and another presented her artwork, also framed and inscribed to the CWC.

Our girl presents her artwork to the Chairwoman

They toured the house and I insisted they see inside of the bathroom.

Bathroom on the Tour

They noticed the fire extinguishers and said they’d not seen them before in a home.  Seema Gupta took them upstairs while the Chairwoman stayed down in my office to talk.  I had put my three published books out on the table and showed them to her.  I told her that clearly I had a lot of help here, but that I carried the full burden, that I have to think about what I can manage.

They had come with an agenda. The Chairwoman said they can offer all sorts of assistance to expand the building, or to build a new home.  But they also have an immediate problem, namely four very young children with disabilities who are in various hospitals in one of the districts that has no functioning  CWC.   The others came downstairs to rejoin us and talked more about the problems they are facing.   They talked of their pain in visiting the children in the institution.  There is a paralysis here… something I noticed years ago.  Some people really do care, but they don’t know what to do.

Table and Talking in the CWC meeting.

Tabla  and Talking in the CWC meeting.  One of the members plays and was thrilled that our girls are learning tabla.

I said I would help.  I said I would take the four children, but that I also then wanted two more without known disabilities.  We have to stay inclusive.  As we were talking, the girls on their own started to dance, and we went to watch them.

The girls on their own started to dance and so we all went to watch.

The Girls Decided to Dance

The CWC hoped Seema and I would come back to the office with them, and review the information on the four children.  I found that two of them are too sick to be cared for in a non-medical facility.  We agreed to take the other two, one an infant with Downs, and another with CP, about 2-3 years old.  Then I reminded them that we will take two little girls with no known disabilities, that we had to remain inclusive.  Right now there are many children in the institution.  Their care is horrible.  I can’t do as much as I want but it was just too painful to say no.  And I do believe we will be expanding.  We have to.

Sometime within the next week, the children will be brought to CWC for us to pick up.

Well, everyone here is excited.  We have many blessings.

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