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

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.

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.

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