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

 

To Not Feel Alone in the Universe

MH Speaking 074

Remarks by Dr. Michelle Harrison, Founder of Shishur Sevay, invited speaker at Conference “Empowering Disabled Persons with Accessible & Assistive Technology” organised by the Associated Chambers of Commerce and Industries of India in collaboration with the Ministry of Justice and Empowerment, held at Le Meridien, 11 February, 2016. Invitees represented banks, PSU’s, and corporates. Dr. Harrison was the only speaker from the NGO sector as Shishur Sevay was the first NGO for disabled children in India to utilize the Tobii Eye Tracker technology for its most severely affected children. This technology allows a child who has no ability to use her hands or feet, nor does she have a stable head, to be able use her eyes on the computer screen to communicate with others. ASSOCHAM invited Dr. Harrison to speak about the “on the ground” reality of accessibility and assistive communication technologies.

Good Afternoon

COMMUNICATION and ACCESSIBILITY are the themes of this conference, but Why is communication so important? What is its function?

  • To not feel alone in the universe as an individual
  • To have some ability to control your environment.
  • To feel a part of some community of other people

The person who cannot communicate is locked out of these basic needs. For those whose only means are their eyes, even that technology has now helped to resolve. For those who have no mobility, accessibility is required or they cannot be part of the community of other people. Communication and Accessibility, the common human needs.

My relationship with India began in 1984 when as a single parent I adopted an infant from Kolkata and raised her, along with my older daughter in the US. But I always wondered, “what happens to the children who are not adopted?” What does India do for these children?  What is India’s policy for its lost, abandoned, abused, disabled, and un-chosen children? As my daughter grew and we visited India, I kept hearing the refrain, “Nothing can be done.” I KNEW this was not true, but I also realized it wasn’t even in the imagination of people what and who these children could become.

In 2006 my one daughter graduated from University and my other from Law School, and I left for Kolkata. I had sold my house the year before and with my savings and pension I was determined to show what could be done. Shishur Sevay will be ten years in June 2016. We became what we hoped to be, a best-practices model of inclusive non-institutional care for orphan children, some of whom have profound disabilities.   We are very replicable and relevant as India moves in intent and action to improve the lives of these children. From the beginning, we lived inclusively; two years ago we established a small school Ichche Dana Inclusive School which we want to expand into the community. In December 2015 we became the subject of research on inclusivity out of Vanderbilt University because of our unique history and establishment of inclusive education. We have begun our own Research and Training Center, the Tuni Harrison Research and Training Center.  It is named after a baby with Down Syndrome, found under bushes, and brought to us by the Child Welfare Committee.  She died in heart surgery, but she died loved, with a family, and with a name. Her portrait sits beside the Gods.

What is our secret? We started with the children, understanding who they are, and what they needed. That’s how we became inclusive, as we had little room, and they liked being together.  They needed each other, the abled and those with disabilities. How did we become leaders in advanced communication technology? Ganga, a profoundly disabled but intelligent child was desperate to communicate and all other technologies over the years had not quite worked.  Her fingers were too weak to manage even a special keyboard; her toes flexed in the wrong direction when she tried to use her feet on a keyboard;  Her neck couldn’t hole up her head enough for her to manage a head pointer.  Deciding eventually on the purchase the Tobii Eye Tracker was a leap of faith on my part as there weren’t any in India to try. I didn’t even try to look for a donor because I didn’t know if it would work.  I dipped further into my dwindling savings, as I have for all of this.  We have just ordered a second Eye Tracker so the girls can communicate directly with each other.  Ganga, who came to Shishur Sevay at 4 years of age, weighing 7 kg has been our leader.  Sometimes I think she is an old soul with a challenged body, determined to teach us how to get it right.

Why Inclusive Dance? Well, the old soul insisted she wanted to dance!  Dance is an ancient way of communicating and of being together as a community… It requires music, rhythm, synchrony, and a certain freedom of movement which is limited by being in the wheelchair. Ganga, with her spastic quadriplegia wanted to dance with the others. So we called Ferdinand Rodricks, who came from Mumbai to help create a harness based on the model of the Kaye Suspension Harness.  We later made a second one, and the girls can move and sway as the others hold them up.  Now we  want to incorporate the Kaye Suspension walker into our dance, if we can get the funds and figure out how to get it to India, or find someone in India who would make one similar.  We have done several public performances of our Inclusive Dance, and we have a channel on You Tube.

As for physical accessibility, at Shishur Sevay we had to find a way to refit as much of the house as we could, and to do it in an attractive way. People coming in don’t even realize that the contours of the entrance are because we needed accessibility. It was a necessity so we figured out how to do it, always being aware that our purpose was to demonstrate what could be done.  

What are the messages I want to leave with you?

  1. We have to change our mindsets. My initial thought when these 12 girls came, aged about 2 yrs. to ten, was that I had to separate the children into two groups by those with disabilities, and those not with disabilities. Why? That’s what you do! The problem is we had very limited space, AND the kids enjoyed being together. We were watching TV together, eating together, having evening Prarthana together and it was working fine.  When interviewed for the research recently they each said they wished they could understand better what their sisters wanted.  Three of our older girls want their careers to be around special needs children.
  1. We have to change society’s mindset with respect to acceptance of people with disabilities in public spaces. We won’t have accessibility until people want it, or until it becomes mandatory by law and enforced. In Kolkata there is almost no accessible space, no accessible buildings. ECO Park is a 480 acre recreational park opened in December 2012. The land is completely flat. There is only one accessible entrance though, at the far end, almost 2 km from the first gate. How hard would it have been to make all the gates accessible? In truth, people in wheelchairs and others with disability are not really welcomed.

There is ironically one truly accessible place I know in Kolkata, the South City Mall, where entrances are graded, there are lifts, clean accessible toilets, and for the abled children, the escalators which are almost as much fun as amusement parks.

  1. Processes and structures to improve accessibility, to develop better products and advanced communication cannot be dependent on market forces and the private sector. There is very little market for them and that will not change until we come to value their lives and want them to be among us.  Entrepreneurship must be encouraged and supported, but not with any expectation of immediate financial returns.  Innovations and implementation must be supported by government and public private partnerships.
  2. Solutions have to begin with input from the end users and those around them. Sometimes inventors make a product and then figure out who can use it. But when you start with the user, everything changes. The core of your ideas may be the same, but the presence of someone in need, a need you see and understand, can result in your tweaking it slightly differently. Hang out with the potential users… informal time…. they might not be able to tell you what they need because they haven’t yet dreamed it either. Include family members and caretakers…. Help them all to imagine.
  1. Include the girls and women in the implementation of technology for those with disabilities!!! They are the ones who provide most of the care. If the technology is only in the hands of men, the times it can be used will be very limited. It takes a change of mind set for mothers to be included in the technical aspects of assistive technology. Women need skills in dealing with electronics, taking computers apart, building switches, hooking up batteries. If we are trying to reach the “underserved” we have to include the women because too often they write themselves out of the picture. “NO, I can’t,” is as common as, “It can’t be done.”
  1. We have to be able to dream. The Indian educational system punishes the dreamers, the challengers to status quo, those who question… Students need to be able to experiment, to go off syllabus. Rote memory cannot produce inventors or inventions. Shishur Sevay was a dream but it required a lifetime of skills to make it right and make it better.  Dreaming isn’t enough; making it happen is a harder challenge. I’m a visionary. I look at something as it is, and then I imagine how it could be even better, and with Shishur Sevay, I built the better model. We have to be able to dream.

What do those with disabilities (and the rest of us) need?

  • To not feel alone in the universe as an individual. They need to communicate, which often requires technology which is rapidly appearing.  Now it must get to those who need it.
  • To have some ability to control their environment.  Whether it is to turn on a light, choose their work, or press a call button – without some capability they are helpless, and alone.
  • To feel part of a community of people by going accessible places, like schools, government offices, parks, public transportation, or even just being able to take part in online communities. When our orphan children first arrived they thought India was about cricket and football. The first thing we taught them was that Shishur Sevay was their Home, and India was their Country.

For those with disabilities to have what basically we all need, WE must

  • Want to have them among and beside us,
  • Listen to their dreams,
  • Walk in their shoes, or AFOs,
  • Take risks,
  • And let ourselves dream.

Then we can do anything!

I thank you all for your time and attention.

Dr. Michelle Harrison, New Delhi, 11 February, 2016 {shishur.sevay@gmail.com}

 

 

Rape… “too much for the reader to deal with.”

Rehearsing for a performance of dance and song, everyone.

Rehearsing for a performance of dance and song, everyone.

I’m Stuck!  I keep starting posts and deleting them, at least six times over the last few weeks.  Fear stops me.

The picture I posted is not what I imagined I’d pick.  I was thinking something sad, related to what I haven’t said yet.  The picture is of a singing rehearsal for the Movement, Dance, and Song program we are putting on next month. At Shishur Sevay we have Dance & Movement three times a week, and Singing & Harmonium twice a week.   We have dances now that include everyone.  One dance is a train, with the older girls pushing along the chairs with the girls who cannot walk.  In other dances, we have harnesses that the older girls use to swing the younger ones as they dance.  Most of the time we dance and sing to the songs of Tagore.  I want to get someone to film the small event.  The picture above is reflective of what it is like at Shishur Sevay these days.  We are no longer living crisis to crisis.

So how do we talk about sexual abuse without “spoiling the atmosphere?”  It is so incredibly easy to ignore.  Like others, I was shaken by the gang rape in Delhi, and then the rape, mutilation, and death of the five year old.   Both these events galvanized the country.

But I also started thinking about what happens every day….  I thought about what one of my girls said of her life before Shishur Sevay, “You beg in the day; then the men use you at night; then you beg again in the morning.”  I thought about the sexual abuse in orphanages…. and I thought about our experience with one of the girls sexually abusing another, in fact, abusing the children with disabilities who cannot protest and cannot tell.  I thought about the pacts of silence around abuse, here, there, everywhere.  Shishur Sevay has become Zero Tolerant with regard to abuse.  There has to be a safe place.  The victims have to come first.  Still, you can’t be zero tolerant unless you can find out what is going on.  All the doors in our house have glass panes.  We have CCTV with cameras all over.  Nothing is ever enough.  Evil has its way of seeping through.

I wrote a book, “The Preteen’s First Book About Love, Sex, and AIDS,” published in 1995 by American Psychiatric Press.  I wrote, “The crossing of sexual boundaries between people, whether in word or touch, seems to cause deeper wounds and greater shame than any other kinds of abuse.  The person who commits the crime of sexual abuse seems to pass on the shame and humiliation to the victim.”

What then do we tell the children?  Do we “normalize” abuse as something that may happen, but isn’t their fault?  What are we saying then about our cultures, and I use plural because these problems are universal.  This is not an India problem except that it has attention now, and because I live here with children who have been abused, and may very well be abused in the future as women, women alone, women as wives, women as cognitively or physically impaired.

I looked again at the picture I posted above, and posted it again.  It’s the same picture but having talked about sexual abuse, it’s not quite the same because we are not quite the same when we see behind the wall.

Rehearsal for a Performance of Dance and Movement, and Song

Rehearsal for a Performance of Dance and Movement, and Song, Everyone

At Shishur Sevay we are also starting tabla classes.  I bought two sets, so two girls could take their lessons at once.  I unpacked the tablas yesterday and then I started tapping the daya and soon I was far away, not thinking about anything, tapping to ancient rhythms that took the troubles out of my mind space.

`Dr. Harrison playing with the new tabla, getting lost in the sound.

I read that tabla is an ancient language, “Everything that is to be played on tabla can be spoken; in fact, everything that is to be played must first be spoken.”  So here are some spoken words I hope one day to be able to play in the language of the tabla.

Rape

I forgot for a moment

I had been raped, for

One moment forgotten,

In eighteen years remembering —

Eighteen years is

for fear,

Eighteen years is

for hate,

Eighteen years is

for pain,

Eighteen more years, for

One more moment, of

Forgetting

I had been raped.

MH

11/76

My first book, “A Woman in Residence,” Random House 1982, now in Kindle, is an autobiographical account of my training in obstetrics and gynecology.  The manuscript I submitted to the publisher included the story of my having been raped at knife-point when I was 17, but the editor insisted I take it out.  She said, “It’s too much for the reader to deal with.”  I went along with her, too vulnerable to argue.

My fear?  I guess I just discovered it, “too much for the reader to deal with.”

Let my dialogue begin.  I have been too silent for too long.

I’m White

Child Labor Law Violation 1

Child Labor Law Violation

I had a bad time at CWC today.  I didn’t go alone, but it didn’t matter.  No one was listening to anything I said, and they were rude and angry if I did try to defend myself.   One of the consequences of my tough decisions in the last couple of months is that not everyone was happy, of course.  For matters of privacy I will be brief, but will say that adolescents, and I believe particularly adolescent girls can be very destructive, and very charmingly convincing that they have been wronged.  In fact this girl has been so wronged CWC now wants to see if the other girls are likewise being exploited in violation of Child Labor laws.

It sounds silly but I remember as a kid cleaning the house with my mother, playing music, talking…. taking care of our home.  I was told today though that in India this is not done, that girls/women don’t clean their own homes.  But what about my girls?  Should I assume they will all be affluent enough to hire servants to cook and clean?  You think those are the families they will marry into?  I think I somehow really challenged a cultural norm.  I think these people at CWC are enraged that the girls clean.  Maybe it’s my being a white American and some image of my exploiting them?  I tried to tell the CWC that I clean the bathroom, which is true, but they weren’t listening to anything I had to say.  I clean the bathroom for several reasons.  First, no one else wants to do it.  Second, in my mind, cleaning is honorable work.  Third, the girls have come to really appreciate a clean bathroom.  They take care of the other bathrooms. That’s not a bad thing.  And of course the hippocracy of all this is that in India it’s the middle class who most uses child servants in their homes.

They seemed enraged that a girl was expected to change the diaper of a child with disabilities.  I’m thinking this is all an April Fools joke and they are dead serious.  So the issue of diapers let to a sudden reaction that I had “normal and handicapped” in the same home and that had to end!  I said that CWC had given me these girls, but that wasn’t relevant either.  It was really ugly, and I expressed my feelings about it, which is to say I was not submissive.  I finally got one person who was lecturing me that this was a court, to understand this court had jurisdiction over the child but not over me.  They simply do not have the authority to force me to take a violent girl back into the home, however much she sheds tears.  Their plan was for me to take her back but not give her work to do.  Yeah, right!

I am not dealing with a rational system here.  I heard it described as judicial anarchy, and I think this is true.  There are no real rules.   Our home has been inspected seven times, with the same kids, same mix of “normals and handicapped” as they continued to describe them.  There has never been a problem.

Would this all be playing out differently if I were Indian?  I’m thinking yes.    It’s been the divide until recently even within the home.     Are they seeing me as the White lady using Indian girls to clean her house?    If this is the stereotype can they  even see beyond who I represent?  This is personal.  I have visited NGO’s where they show off the weaving being done by five year olds (vocational training), and no one says anything.  I reported a home almost ten years ago where girls were being used as servants instead of being sent to school.  I had proof, documents, school records, attendance records, but I could not get anything changed.

This is the CWC where I brought the eight starving children from Aunty’s, where three children there have died since then, but no one will do anything.  The last time I was there, I was standing outside and Aunty told me to move because the feces was coming down over the balcony and she didn’t want me to get dirty.  Government inspectors came but they ignored everything.  I was there.  They ignored me.

Now it’s 2:30 am and I can’t sleep.  I tried.  I’m also in the middle of major dental work, as things seemed a bit quiet and I took the time.  Well, I guess from the tension this evening, the temporary bridges and crowns cracked and my mouth hurts.  I’m afraid to leave Shishur Sevay until this “surprise” CWC inspection happens this week so I’m not sure what to do, except drink a lot of liquids only, and keep my mouth closed… not so easy…

We told the girls what was going on because they will be interviewed, and because we will be sprucing up our paperwork, which needed doing anyway.  So a friend told me to have them prepped and all I could think of were the custody cases in the US where the first question is always, “Did your mother/father tell you to say this?”  Nope, they will say what they want and I will deal with it, whatever it is.

I know we will survive this — but I’m scared.  I’m also pissed.  I’m a seventy year old doctor, psychiatrist, and obstetrician and gynecologist.  I have 45 years of clinical experience working with woman and children.  Actually I wrote that in my report today but they ignored it.  Even when Seema Gupta translated it into Bengali they ignored it.  They are out for blood, my blood, this White woman’s blood.

The Seventy Year Old Doctor

The Seventy Year Old Doctor

Here is my testimony:

Dance and Movement, Inclusive as it should be

Dance and Movement, Inclusive as it should be

This is a picture from our new Dance and Movement classes three times a week.  On the days between classes the girls like to put on the music and practice.  Six years ago I promised Ganga she would dance one day, and now she does.

We live as a family.  We eat together, sleep together, watch tv together, pray together.  We don’t separate by abilities because we all have so much to give each other.

OOPS!  Another picture of all of us together.  no separate  beaches.

OOPS! Another picture of all of us together. no separate beaches.

The group who came with me today was

1.Seema Gupta, Board Member, Joint Secretary, and Deputy Registrar of Calcutta High Court.

2. Purba Rudra, Ph.D, our Academic Director

3. Sudipendu Dutta, my secretary.  (I hired him as assistant, but in India, Secretary is higher, so now he is my Secretary).  Sudip is an incredibly hard worker, sincere, responsible, and cares so much about what we are doing.  He also has Cerebral Palsy and walks with sticks.  He manages.  I kept wondering what it was like for him, listening to all this about not having “handicapped and normals” together.   What did this mean for his life, his family life, his work life…. Was it OK that we were all together or should there be separate accommodations for him?   He is also an activist working with others on creating a residence for people with disabilities…. and has been talking about the success of inclusion, Shishur Sevay as a model of how good it can be.  What was he thinking?  I’ll have to ask him in the morning.

Now it’s 3:30 am and I think I’m ready to post this and try to sleep for a couple of hours.

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