But why now?  First of course is that these children are/were not getting care.  I just can’t walk away.  There are also changes here that make it possible for me to say yes.  I am not so alone.  Dr. Purba Rudra has joined us as our Educational Director.  I’ve known her for years as she was getting her Ph.D. at Rutgers University and was part of Asha for Education in the US, as I was.    She has come back to Kolkata.  She is teaching full time to the girls on our academic track, so  I don’t worry about them all day.  The other addition is Maggie Redden as Communications Director.  She is originally from India, adopted to the US as a two year old, and now back for a year to help and be part of our household.  Their presence and support make it possible to do so much more, particularly outreach.  I think we are a good team.

Some of these orphans are “business orphans.”  They were taken in by adoption homes, and then no one would take them, they were essentially discarded.  So they were given up first by their families, then by the Agency, and then by the government, which does not provide for their care.  There is no place for them to go.  I’ve tried.

The other change is a fundamental one, namely deciding that some of the girls will not go on in school, but will take care of the little ones and develop skills in assisting the special educators.  For each of them, for different reasons, learning was difficult, and being in a school setting was also difficult.  Especially for kids with their backgrounds, being home is all they want.  I figure they spent enough years fighting the big outside world.  So when Aunty told me once again about Sanjana crying in the night to be held, I thought, “I have lots of girls to hold her.”

I studied at Yad Vashem some years ago.  I wanted to know more about the Holocaust, as I was writing and teaching in medical ethics, a subject  that invariably includes the history of medical experimentation, the value of human lives, and which lives have value.  What is a life worth living. The beginnings of the Holocaust involved the extermination of the “feeble minded” and the “handicapped” who were said to have lives not worth living.  Families sent their children to places they thought would give care, and months later would receive notices of death.  So I thought about these children, really at the end of the line, in a situation where even in a hospital they would continue to starve, where the government authority charged with their protection was saying it was helpless to do anything.  And then it was just a matter of saying that these children deserve to live as much as any of us does.  At stake was protection of the most vulnerable rather than slow death by neglect of the most vulnerable, and I decided I couldn’t let that happen.  I’m a mother; I’m a doctor; I’m in a position to do something.

I have done very little fund raising since starting Shishur Sevay.  Most of this has been done on my savings, and the sale of whatever I owned in the US.  And it seemed very strange to ask for money to raise children for whom I chose to be responsible.  That was fine as long as we stayed within the small number of children.  And it was fine because much of this was an experiment in how to run such a home, how to raise these children.  I preferred to experiment with my own money, not with someone else’s.  But we are no longer an experiment.  I feel incredibly successful in creating this home where the children really are family to each other, and where the values they express reflect our hopes and dreams for them.

Today I asked one of the girls to write about what she wanted to be doing in five years, how she wanted her life to be.  I asked because she is troubled and sometimes is also TROUBLE!  She wrote that she wanted to be studying and she wanted to find her sister to take care of her and her other sisters (at Shishur Sevay) and if her sister was married and had a child she wanted to be sure that her sister’s child studied.   These are their values and we cannot claim credit for their values but we can take credit for not killing those desires, for providing role models of caring and commitment.  Not one of the girls has ever talked of wanting “things” when they grow up.

To go the next step in our development, to take more children, to do more outreach will require greater effort at fund raising.  It’s beyond my often knee-jerk reaction of  “I can do it myself.”   With or without funds, our children will not starve because we won’t let them.  But we will need to move.  My daughter Heather and her husband Andrei have started a Friends of Shishur Sevay in the US and soon we expect to be able to collect funds that are tax deductible.  The pieces are coming together.  We are positioned to grow.

Right now we are 14 children and me living in 1500 sq ft.  The main room where classes go on for the children with disabilities, where office work goes on, where the TV is, where laundry is sorted, is also the room where we all sleep at night, rolling out mats and blankets and pillows.  We eat in shifts because our dining room is too small for all of us.  Our entire plot of land is 2100 sq. ft.  We need room for rehab, for exercise, for office space, for a superintendent to stay eventually.  As I look at the future and who will run this place one day, I’m guessing they will want their own room, bed, cabinets, maybe even their own bathroom.  I’m very happy living this way, but to do the work we want to do, to have the influence we want to have, we must expand.  We also need a safer and better neighborhood.  No one wants to live where the smell of human excrement comes in the dining room window.  I walk the lane coming here and I’m horrified because of the smell and I wonder that visitors really think.  And those of you who have followed our journey know the issues of safety we have faced.

Where are we putting the new children?  That is simple too.  Years ago we got long bolster pillows to put between the kids on the mats for their optional use.  We sleep among pillows and it seems fine.  So, I’m just taking away the pillows and sticking kids there in between the others.  It’s really not quite like that but that is the atmosphere.  How do you say no when there is still space on the floor and food in the pantry, and you are sitting in Kolkata, not an ocean away and all you have to do is to say “Yes.”  So that’s how we are 14, with a few more on the way.  We are blessed.

 We sent rice, Maggie Noodles, Dal, Chana Dal, eggs, powdered milk formula for babies, neutrala, a soy product, chira (flattened flaked rice) potatoes, and sattoo (powdered chhana).  The cost was Rs. 3889, or USD about $80.

  I’m planning to visit there tomorrow.  I’m bringing someone from a home that is considering taking one of the severely disabled boys.  It’s a good home, like ours, and we do this by keeping the number of children within our resources. Knowing our limitations is one of the most important components of success.  Saying no is painful.  So, we live with that, and once in a while we find reason to stretch a bit.

The biggest obstacle to feeding the children is an attitude by the staff that because the children are so starved, you cannot give them much food of they will vomit and have diarrhea.  So, they let them be hungry.  I cant’ seem to get past this with anyone!  I’ve tried to de-worm them but so far it hasn’t happened.  I’ve suggested frequent small meals but that hasn’t happened.  I brought two dozen bananas the day we took the sickest ones to CWC, and the bananas were still in the office at night.  One day I was told that the boys have an “emotional” problem over food.  I said it’s called starvation.

I know it is painful reading this, as it is painful living it.  There are problems with the government and problems in the home.  And no one cares!  The best chance those kids have now, the ones I can’t place, is in that home — if we can manage the problems.  If we can’t, I still don’t know.  Over the weekend I talked with friends here and heard terrible stories about other places they knew.  One friend said, ‘The government doesn’t care if they live.”

Lots of thoughts in my head, and probably some of the same in your heads.   Tomorrow is another day.  I’m so totally swamped with work at Shishur Sevay, but I’ll go to see the children at Aunty’s.  Balance in my life? Nope, and not yet time to rest.

How long do we wait for “something to happen?”  We hired an ambulance to take us to Aunty’s, pick up the sickest children, and take them to CWC.  

I insisted we take them into the building.   

 The waiting area was interesting, as usual.  The kidnapped girl was there again, and she really smiled when she saw me.  The adoption people were back, this time with a mother whose husband had died.  She was giving up her two children so they could have a better education.  The little one in her arms was about two.  The older girl looked about ten or eleven.  I tried to figure out how this agency was going to insure their education and “better lives”.  These were the same people who had given Aunty two children with disabilities, and they had stopped paying sponsorship. 

We were called into the room.  The Committee was clearly uncomfortable with the children there.  They kept saying, “The children should go out.  They will be happier, and I in my cheerful little way said, “Oh that’s ok, they are fine.”  We were there about three hours.  Many phone calls were made.  The Committee said we would have to take the children back to Aunty’s.  They were quite horrible to Aunty, but they had no solutions other than sending the children back home with her. 

Maggie tries to tell the CWC that 25 years ago she was this child, but they aren't listening.

I  asked the Committee, “Are you saying there is no government place for children with disabilities?”

“No, there is no place for these children.”  I was shocked at this admission. 

I said, “But you are the highest authority.  What do we do?” 

They told us that in a week there would be a large delegation of legislators planning to visit Aunty’s home and they should give funds.

“But what if they don’t?  What happens then to the children?” 

One of the Committee members seemed to get it.  She was back on the phone.  I was asked to make a plea to the Sister at Mother Teresa’s.  I did.  Two children would be accepted there on a temporary basis.  I chose the two weakest, thinnest, and sent them in our ambulance.   Seema and Aunty took them to Mother Teresa’s, but just for a temporary basis.   We waited around as more calls were made.  Bijoy watched some of the children out in the hall.

Soon another group of people showed up, a kind of rescue group, and they arranged for the child with the head infection to be admitted to a hospital.  So one group went in their big ambulance back to Aunty’s.  Bijoy took our group home.  Seema and I went in our ambulance to the hospital with the sick boy with the head infection.  This evening Seema and I went to see him in the hospital.

I’m writing at midnight and tomorrow I will take some action regarding the starving children with disabilities, but before I turn in, I just want to summarize yesterday and today.  Yesterday the government agreed to transfer six of the children, the older ones, to another home.  They wrote the order.  Today Aunty’s staff took the boys to the new home, and the home refused to take them.  I can’t quite figure out why as the phone connection was poor.  Aunty called everyone she could think of, but there was no way to get the boys admitted, so now they are back hom.

 The waiting room of the CWC is an interesting place.  First of all, there is no security, and people just wander in off the street, or groups congregate outside.  It is also not accessible.  We had to carry Maggie up the entrance steps.  Shishur Sevay has  guards 24/7.  No one enters without signing in.  (The guard can be seen in the top pic as the team is leaving).     Shishur Sevay no longer has steps, only ramps.

I’ll try to explain all the connections that went on yesterday.  The above sketch is of people from an adoption business.  Cici and I visited there in January 2004.  The room was freezing; the babies were laying on plastic sheets, and only partly covered by tiny blankets that they said had been donated.  The babies were so cold, ice cold hands and feet.    Now eight years later, two of Aunty’s children come from that home, the children for whom the agency could not get any money, and eventually gave to the government, and then to Aunty.  Initially the agency supplemented government money with “sponsorship” money but then they stopped paying.  There is no legal agreement.  These children are the byproducts of adoption, the human beings no one wants. .  So here I sit, looking at two ladies holding two babies who are now in the custody of this orphanage.  They are here at CWC to make it legal.  If those babies are OK they will be adopted; if not they will eventually become the responsibility of the government.

In another part of the room, a social worker I’ve met before sits with a group of older girls.  These girls have all just been rescued from trafficking.  They look lost.  One has family that has come, as her mother had been hunting and hunting.  The girl had been kidnapped and imprisoned by a family member.  I’m not sure this young woman will ever be ok.  That’s just how rape is.  I know.   I tried to tell her she will be OK.  I made her laugh.

At the CWC, Gibi goes in with Aunty to meet the Committee.  I stay in the waiting area with Purba and Maggie.  This CWC always finds reason to yell at me, and the job now is about the kids and I’m a distraction.  Gibi and Aunty go back 30 years, so they go to meet with the Committee.  We wait.  Gibi comes back;  The Chairwoman has called and called, but no one will take the older boys.  These were from the group of 10  boys sent to her one day, already on their way to her when she received the call, and tried to refuse.  Now the government has no place else to put them.  They tell Aunty, “No, No, We will help you.”  They have said the same for months.  Then the Chair turns to others in the Committee room, representatives of other NGO’s and scolds them for not taking these children.  They are accused of only taking children who have relatives, and treating these orphans as GARBAGE.  That is the word that is used.  The Chair is saying the NGO’s treat the orphans like garbage. 

Back out in the waiting room, Gibi reports all this.  As she says the word, “GARBAGE” I see Maggie wince, tears welling up, and I know what she is thinking.   Maggie had polio; she was adopted by an American woman 25 years ago.  She was one of the unwanted, one of the very lucky unwanted.  She sits there, a paralympic champion wheelchair racer, a Nike representative, a Polio spokesperson, University graduate and independent woman, and she hears the words of how orphans are seen and treated in her “homeland.”

Everyone seems happy at the Chair’s angry words, but I’m thinking, ” Why should orphans be the responsibility of NGO’s?”  Why don’t NGO’s want to take these children?  Well, for a start the government doesn’t pay enough to take care of them.  The government money is like seed money, meant to start the system going and then the NGO’s have to raise funds for the real cost of the children.  In this case, the seed money comes late by months.  NGO’s have to depend on their fund raising, their ability to make their cases for charity, in some ways not so different from begging.  “Please, Please, help these orphan children!”  But why?  Why should an orphan’s life depend on the charity or fund raising ability of  “NON-Government Organizations?”  The government shifts its responsibility.  If no one wants to give money, the children go hungry.

Hungry orphans are not an accident.  They represent a society’s decision not to feed them. 

Dr. Michelle Harrison

Founder and Board Secretary

Childlife Preserve Shishur Sevay

9830240182

                                                                                                       Summary Report on Conditions at

AUNTY’S HOME

24 December 2011 to 24 January 2012

Childlife Preserve Shishur Sevay is an NGO established in 2006 for the care of orphan girls, some with disabilities.  We visited 24 December as part of our community service and outreach.  We found that conditions had deteriorated.  Aunty wanted my medical advice as I am familiar with the problems of running such a home. 

• CWC sent 10 boys over the objection of Aunty, boys with severe behavior problems in addition to their disabilities.  They have been violent towards the other boys, and stealing food from the younger ones. These boys raised the number of residents above sanctioned number, but more important seriously disrupted the peace and functioning of the home.  The government has not been able/willing to take them back and relieve this crisis in spite of Aunty’s appeals.
• Funds ran out as expected government funds did not come, and private funds also did not materialize as expected.  Most staff left; physiotherapists and educators could not be paid and did not come.  Medical help likewise did not arrive.
• The children with severe disabilities cannot walk, or feed or toilet themselves.  Without staff, the children could not be bathed or fed properly;  The children lost weight.  They require specialized staff so they do not choke.
• Beginning on 24^th December we started hospitalizing the most frail children at XXXXXX Hospital.  They were discharged after 2-3 weeks because doctors had all gone to Gangasagar Festival.  The children lost weight while in hospital.  No test were done, no medicine given for infections.
• Shishur Sevay agreed to take one child who was misdiagnosed as MR.  This was done through CWC.  At that time the CWC in XXXXX was made aware of the problem that the children were being discharged but they were unable to prevent the discharge.
• Local merchants became belligerent because they were not paid.  The children were not de-wormed. 
• Aunty alerted the CWC Kolkata that she was over capacity and needed to transfer the ten boys.  She went several times and was put off until next meetings.  Finally on 18^th January she was given an order to transfer six boys to another home.  However on the 19^th when she took the children there, that home refused to take them and sent them back,
• 20^th January 2012, I hired an ambulance to take eight weakened children who had been discharged from the hospital to CWC Kolkata.  Aunty was out of options for their care, and was honest in the problems facing her home, namely that she considered it sub-standard and did not want to keep children under these conditions.
• 20^th January 2012 CWC Kolkata said they had no place to send the children.  We learned that there is no government facility for multiply disabled children and they said the children would have to return to Aunty’s.  They were however able to convince Sr. XXXX at XXXXX to take two children temporarily, and were able to get the child with a head infection admitted to a hospital.  The other five returned. 

I am a retired doctor, psychiatrist, and professor from the US. Before retirement I was with Johnson & Johnson Corporate as Worldwide Director of Medical Affairs in the consumer division.  I have been involved with care and education of children in West Bengal since 2000.  I founded a home for orphans in 2006.  I stay there with the children.

1. The care of children with disabilities is labor intensive as the children cannot move, eat, toilet on their own.  This makes their care far more expensive than that of abled children.
2. Homes cannot operate without funds.  The current system assumes that NGO’s will find private donors, in India or abroad to pay the real costs of care, while the government’s funds are insufficient.  Essentially the government is saying to the NGO’s, find someone to pay for these (government) children.
3. Hospitalization is not free.  Staff must be supplied to care for the hospitalized children, as well as food, medicines, and laboratory tests.  Even warm water for bathing a sick child has to be purchased.
4. The above refer to basic survival of the children with disabilities and does not address rehabilitation, quality of life, education, play, security, and affection.  Those don’t happen without staff and professionals, and they don’t come without payment.  Though abandoned by families, these children should not live lives of abandonment.

 Respectfully submitted,

Dr. Michelle Harrison

Secretary

Childlife Preserve Shishur Sevay

24 January 2012

Aunty’s Support Team Leaving Shishur Sevay

K learns numbers on the steps

This is TOO TOO funny!  When the girls came in 2007, I tried many ways to introduce math concepts.  One was to number the steps so they could easily understand one more and one less.  The girls and the teachers thought I was nuts, and no one would use it for understanding numbers.  But apparently it did leave an impression.

Last evening one of the girls asked, “Mummy, remember the numbers you put on the steps?  Could we do that for K?”  And so they did, and taught her the numbers, and up and down.  They love teaching her.  They have infinite patience and never scold her.  They delight in every achievement.  They also delight in seeing her with me.  There has always been some tension around Ganga’s attachment to me, and mine to her.  So somehow seeing K with me, knowing how hard I worked to get her and her contentment on my lap is really important for all of them.  I guess also she is allowed to attach to me the ways they are all hesitant.  Each morning they make sure she says hello, good morning Mummy, and before bed she is brought to tell me good night.    They want her to be what they have had trouble being, and to learn what they have had trouble learning.  It is beautiful to be in this process, to see how they will be as mothers, different from how that would have been without Shishur Sevay.

Ganga is accepting her role as big sister who has to share Mummy more.  Her difficulties with K are the moments when she realizes K’s ability to walk, eat on her own, say her name, hold the pencil…. Ganga gets sad,  but she will be fine too.  A new child is a new adjustment for everyone, including me.

I continue to work with Aunty to get the children transferred out of her home and into more appropriate places.  And I ponder a lot, who will care for the children, particularly the orphans who can’t even walk or talk or feed themselves, or reach out for human contact?  A long succession of people contributed to these children being as they are.  First is the woman who gave birth, then whoever decided to give up the child, then the people who had the children for years who didn’t feed them or rehabilitate them. The adoption agency that could not ”place” them.  Then there is the government that had to be involved along the way, assigning the children to one facility or another, licensing the places these children have been.  How do you get a five-year old who is 7kg?  It’s called starvation.  It isn’t an accident, but rather a series of policies and individual decisions along the way that this human being was not worth feeding.  

I googled the quote about a society being judged by its care of the weakest….  and it doesn’t really trace back to one source, but rather a general statement of the “should” of caring for the weakest, lest the nation or society be judged badly.  I wondered why it was an issue of judgement, rather than of moral imperative, so I googled moral imperative.  I seem to have been gifted with a good dose of moral imperative that drives me.  But then I thought about society where there is NO moral imperative.  So then I moved to “Rights” as how we have to address these issues because then it doesn’t matter whether people care or not, they have to enforce rights….. Well, that is my thinking journey this afternoon.  Aunty came by and I typed and printed the letters she needed to try to get the government to relieve her of the violent boys she cannot manage.  

It’s REALLY a mess here!  I think I’ll go count steps with K.

Mummy's lap is always a safe place

Today we met with the government committee charged with placing children and they have officially transferred K to Shishur Sevay.  K has been opening up, throwing and catching a ball, laughing, even walking from room to room on her own.  But this morning she was tearful and all day she was stoic.  She threw up in the car three times going there, none coming back.  She said nothing, but her eyes teared up again and again.  Home tonight she is laughing again, and playing peek-a-boo with me.  Last night the big girls were playing at chasing her and she came running to me and climbed onto my lap.

Today I also spoke with the government committee about Aunty’s home, and the eight children in the hospital.  The hospital wanted to discharge them and I’ve convinced everyone that they must be sent elsewhere, not back to Aunty’s home.  Aunty is grateful.  This committee is new and the women there are VERY nice.  Nothing bad happened!  I was there earlier in the week just to discuss K, and they were NICE then too.  After that I went to the hospital to see the eight children and they were NICE there too.  Then on the way home we stopped for ice cream and I returned a damaged DVD and the man was NICE there too!

I thought maybe the whole thing was some mal-alignment of the stars and planets over Kolkata, but today these committee people were NICE again.  And it’s not the stars because later in the day we met with a government official at Aunty’s who was NOT NICE and clearly has no interest in the condition of the kids.

I’m exhausted, and need to sleep but I really wanted to share our good news.

Oh, and yesterday I pressed and pressed the girls over a spelling test and they were eventually able to get at least 90%, some even 100%.  I was jumping up and down saying I knew they could do it, and that’s why it’s been so hard because no teacher ever thought ORPHANS could get so many spelling words right, or answers to any questions right.  The girls were grinning as I reminded them of ALL the teachers who said 50% was good enough and that they couldn’t do better.  I have girls who can’t do well and I don’t pressure them at all.  But some are really smart but they have been spoiled (a really appropriate word as this is so bad for them) by teachers setting the bar very low.

OK, got to get some sleep.  I’m smiling as I write this so I hope you are too.

My goal is to help Aunty’s Home to be a better place, where Aunty can take care of the children who look to her for love, comfort, and food.   I sat there, holding this child a long time, talking to her (she doesn’t speak) and trying to define better my personal mission here as well as Shishur Sevay’s.