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}

 

 

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