The Sun Comes Up on Shishur Sevay

09 Jul 2016 2 Comments

by Dr. Michelle Harrison in Assistive Technology, Culture, Daily Life, Disability, Funds, Future, Inclusion, Interns, Music and Dance

 

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

02 Aug 2015 3 Comments

by Dr. Michelle Harrison in Begging, Cerebral Palsy, Disability, Dr. Harrison's Life, Funds, Future, Obstacles

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

CWC (Child Welfare Committee) Finally Coming For Inspection

14 Jul 2013 3 Comments

by Dr. Michelle Harrison in Child Welfare Committee, Culture, Daily Life, Disability, Dr. Harrison's Life, Education/School, Funds, Future, Outreach

Our last contact with CWC is described in the post “Foes Into Friends” http://shishursevay.com/2013/04/03/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.

Beggars for Life

24 Sep 2012 2 Comments

by Dr. Michelle Harrison in Child Welfare Committee, Disability, Funds, Orphans

There ought to be a law that children can’t beg after ten o’clock at night!  There ought to be another law that NGO’s can’t use children to beg for their funds.  

There is a fine line between children on the street begging for food or money, and children in orphanages taken around, like kids in the US on Halloween, begging for clothes for the pujos —  That line was crossed last night after ten, when three children and their orphanage director came looking for money for “watches, shirts, jeans, and shoes.”

I know these children.  I know their director.  I’ve helped them out financially before.  I stopped when I could not get any accountability.  I have been able to get some services for the children, but financially I have said no.  I keep saying no.  I keep being asked.  A week ago I said no.    Four days ago she came for money and I said no.    But last night she got me.  She brought the kids, holding their hands out, looking very sad as she had them do their begging act.  I gave her Rs. 1000, about $20, far less than she had demanded.  I did it for the boys, who know me as someone who helped them.  I took pity on them and that overruled my anger at her.  It was already after ten and they had at least an hour’s journey home, although she did say they still had another stop to make.

These boys were beggars on the streets and in the rail stations, and now they beg for their orphanage.  This is their only achievement.  They don’t excel at sports because they have none.  They don’t excel at education because they have none.  They don’t excel at work because they have none.     This is the Indian government’s version of child protection and rehabilitation.  But it’s also a social and cultural pattern.

This is the season of extortion here.  Local “clubs” set up pandals, temporary temples to Goddess Durga.  These clubs raise money by assessing residents and asking for donations.    It’s one of the rules of life here that you do not say no, because people get killed that way.  There is never any accountability over that money either.  I’ve heard that the same goonda who demanded and got extortion money from me to open Shishur Sevay, also stole all the Puja money one year from his club.

But let’s come back to a central question, the difference between how India could take care of its orphan children and how India does take care of its orphan children.    Government homes receive funds from the State and the Central government, supposed to be 10% from the State, 90% from the Central Government, but the 90% doesn’t come until AFTER the State puts in 10%.  So, as is the case of West Bengal the State has not fulfilled its commitment, the 90% is not coming.   The people who run these homes are expected to raise the funds, hopefully from foreigners.  Foreigners have soft hearts and don’t like to see hungry or sick children.  It’s all a game because the people running these homes know from the start what to expect, know they will have to raise the money on their own.  So they become like government fund raisers, developing their networks to feed money into India to feed the Indian children India will not feed.

So you take the children who were begging on the street, all the better if they have disabilities, and put them into government homes where they can put these skills to better use, namely begging for the money that the government promises but doesn’t deliver.  When I adopted my infant daughter from Kolkata in 1984 I wondered what happened to the children who are not adopted.  The sad answer I’ve learned… not much good happens to them.

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