Living in a gray zone

Childhood, we tell ourselves, should be that blissful state of innocence and joy, but this is often not the case for children who are disabled. I learned this first-hand on my voyage of discovery, travelling to visit organisations working with the disabled, and in particular with children. In so many places, I found that to be a disabled child is to live in a gray zone - a place of neglect, despair, and isolation. Branded as the "cursed" one, punishment for bad karma in a previous life, a disabled child is destined to carry the burden of nature's cruel dispensation the rest of his or her life. But great misery also moves some people to great service, and in the many organisations I visited, I found hope too, and a humanity reaffirmed by the dedication of those who work there. This is my recollection of my journey, but it is also their story.

I began my journey in Delhi. One early morning, Avijit Dey, the development officer of Deepalaya, an institution for handicapped and disadvantaged children, drove me to the Okhla Industrial area. We stopped at the entrance to a narrow lane and walked toward an area known as Gole Kuan (round well) where one of Deepalaya's schools is located. I have been in slums before, but the combination of the children's disabilities and their surroundings - open sewers and piles of garbage on both sides of the street - depressed me. How can they learn in such dismal conditions, I wondered sadly.

I was taken to a classroom where a teacher who looked no older than a recent high school graduate sat on the floor with half a dozen blind children, trying to teach them by using their senses - learning about various objects by touching, smelling or tasting them. I watched as the children tried to separate apples from oranges, and wondered if they will ever be able to tell the difference between red and yellow. In another Deepalaya school located in nearby Sanjay Colony. A teacher was helping little Pinky, whose age I could not guess, a victim of Downs' Syndrome, coordinate her motor skills by using building blocks. Pinky tried ... unsuccessfully, but the teacher showed remarkable patience and understanding.

In a corner, a speech therapist-teacher was working with Khalid, a teenager on crutches who had his spine crushed in an auto accident, his vocal chords badly damaged. By using a combination of sounds, inaudible words, and gestures, Khalid tried to answer the teacher's questions. It seemed like he understood the questions and knew the answers but was frustrated when the words did not come out right. I asked Khalid what he wanted to become. Khalid's eyes lit up but no words came out ... only a gurgling sound. The teacher told me that Khalid loved computers and wanted to become a programmer and wished he could work for Microsoft one day.

Later that day, we drove to Tuglakabad, an economically and socially depressed area, to visit ASTHA (Alternative Strategies for The Handicapped) located across from the ruins of Tuglak's fort, a small institution that provided educational support to about 30 children with multiple disabilities. "The children have left for the day," Radhika Alkazi, the founder told me, "but you are welcome to meet and talk with the teachers." In a modest building cramped with an assortment of furniture and teaching materials for the disabled, I asked the teachers what they needed the most. "Computers," they said "to set up a database for sharing information with other institutions for the handicapped." Small needs (a computer costs less than Rs.20,000 now) still sounded like major challenges.

The next day, I went to the National Association for the Blind (Delhi Branch) in R K Puram. Ashwini Agarwal, the director, himself visually impaired, took me to the classroom where children sat around narrow tables learning Braille on paper. One boy worked on the Braille machine; others waited for their turn. I wondered what it would take to provide each one of them their own Braille printer. In developed countries, children in elementary schools are using their personal computers; yet in India, for a blind child to have a Braille printer was a dream (a Braille printer assembled by an Indian manufacturer costs approximately Rs.7500 whereas a Universal Braille Kit, developed by the same manufacturer costs only Rs.500. Could we provide each blind child at least a UBK? What a difference this small investment - the price of a lunch in the United States - would make in the life of that child?).

Two days later, at Kolkata's airport, I took a yellow cab that seemed to fall apart each time the driver slammed on the brakes, which he did every so often. In the sweltering heat and humidity, the short distance to the hotel seemed to be never ending. I came here to meet with Rosalie Giffoniello, a teacher from New Jersey who runs several projects for the orphans, disabled children, and abandoned/abused girls in the poverty stricken areas of Kolkata. We took the subway to Tollygunge to visit the Rehabilitation Center for Children where Rosalie wanted to set up a Music Therapy program for the 60 plus children who were undergoing long and painful treatment for Polio, Cerebral Palsy, and Downs' Syndrome.

Expressions of pain lingered on the faces of the children. How do you teach someone who is battling with pain every waking moment, I wondered. Rosalie suggested that perhaps music could take away, at least momentarily, the pain that these children endured for months. I asked her what it would cost to start the music therapy program. "Just about a thousand dollars including the instruments and a part-time teacher's salary for a year," she said. "We will raise the funds when I return to Seattle," I said. I wish I had captured the joy on Rosalie's face.

Deepalaya
CONTACT: Avijit Dey
New Delhi
Phone: 2551-2908

ASTHA
CONTACT: Radhika Alkazi
New Delhi
Phone: 2641-9862

Amar Jyoti
CONTACT: Dr. Uma Tuli
New Delhi
Phone: 2215-1286

Helen Keller School for the Deaf and DeafBlind
CONTACT: Reena Bhandari
Navi Mumbai
Phone: 022-2778-2214

Blind People's Association
CONTACT: Dr. Bhushan Punani
Ahmedabad

National Institute for the Visually Handicapped
CONTACT: Anusoya Sharma
Dehradun, Uttaranchal

Sharp Memorial School
CONTACT: P Samuel
Dehradun, Uttaranchal

National Institute for the Mentally Handicapped
CONTACT: Dr. L. Govinda Rao
Secunderabad, AP
Phone: 040-2775-1741

Sweekaar
CONTACT: Dr. Hanumantha Rao
Secunderabad, AP
Phone: 40-784338

Vidya Vrikshah
CONTACT: N. Krishnaswamy
Chennai, TN
Phone: 44-2493-7926

National Association for the Blind
CONTACT: Manoj Kurien
Thiruvananthapuram, KERALA
Phone: 0471-541595

Manovikas Kendra
CONTACT: Dr.Sharada Fatehpuria
Kolkata, WB
Phone: 33-2422-3305)

Rehabilitation Centers for Children CONTACT: A.B. Choudhuri
Kolkata, WB
Phone: 2494-6478

Prabartak
Kolkata, WB
Phone: 359-1751

In another part of the city, Salt Lake, I went to see Prabartak (Home for the Mentally Retarded Children), which housed about 50 abandoned boys and girls ranging from 5 - 18 years. The center had minimum educational facilities. Rosalie wanted to set up a similar music therapy program here as well.

The children - many of them teenagers - gathered around me hugging me and shaking my hand. Rosalie asked them to sit on the floor and they sing "We shall overcome ... " First in English; then in Hindi (hum honge kaamyaab ... ek din). Did they understand what they were singing? Did it really matter, I wondered.

I did not ask Rosalie about funding the music therapy program for these children. All I had to do was to look at the smiles on their faces that hid the dismal conditions of their surrounding. They looked so happy, I thought, and at that moment I made a promise to myself. I would help keep them smiling by supporting the music therapy program. I took out a few Life Savers that I had in my bag and handed them out ... not enough to go around for all. They danced with joy. I turned quickly and left without looking back. I did not want them to see the tears in my eyes.

The next day, I went to Manovikas Kendra (Research & Rehabilitation Centre for Children) which, I was told, had treated over 12,000 mentally disabled and autistic children last year through a network of centres throughout the state. About 400 children received medical, physiotherapy, and educational support at the centre. Thanks to the generosity of its patrons, the centre was able to provide state of the art facilities to the disabled.I kept thinking what difference proper resources can make to an institution's ability to serve the needs of its people. As I left Manovikas, I wished there were more institutions like this in India.

From Kolkata, I went to Hyderabad to find out what the National Institute for the Mentally Handicapped (NIMH), a Central government-funded agency, is doing to provide educational support to mentally challenged children. NIMH claimed to have helped over 6,000 children through early intervention, rehabilitation, and vocational training since 1986. It was Sunday and the children had gone home. A teacher took me around to see the classrooms, equipped with similar objects and charts on the walls that I had seen at many other institutions that educate children with disabilities. They showed me their publications and the research facilities that the Institute library offered. At least the government is doing something for this invisible minority of India, I thought to myself.

However, it was a chance meeting with Dr. P. Hanumantha Rao, a pediatrician, who has dedicated his life to helping disabled children and homeless people, through his two organizations, Sweekar and Upkaar, that I learned something about serving humanity. Dr.Rao was clearly one of the most energetic and forward thinking individuals that I had the privilege of meeting in India. He had numerous plans - starting a university with emphasis on special education, welfare homes for the old, and vocational training for the unemployed. He took me around the medical and physical facilities that his institution provides to the sick and the disabled. I was impressed with the bright and cheery classrooms adorned with hand painted pictures of flowers, trees, birds and animals on the walls. A day with Dr.Rao left me energized and gave enormous boost to my faith in the innate goodness of humans.

In Chennai, Prof.Kalyanakrishanan of IIT Madras, who has developed Braille software capable of representing text in any Indian language, suggested that I meet Mr. Krishnaswamy, a retired IPS officer. Mr. Krishnaswamy founded Vidya Vrikshah, a charitable organization to help educate the blind, in what looked like the garage in his home.

Mr. Krishnaswamy told me about his battles with the bureaucracy over the hurdles in receiving donated used computers for training teachers of special education. He also wanted the state government to provide each blind child a portable Universal Braille Kit and campaigned tirelessly to the powers-that-be. The tardiness and the apathy that he encountered dealing with the bureaucracy did not diminish his enthusiasm or commitment.

From Chennai, I traveled to Trivandrum to meet with the National Association for the Blind (Kerala branch) which supports over 200 visually impaired children through community based rehabilitation, integrated education, and prevention of blindness. The school was closed but I had a learning experience with the staff. Like its sister branches in other parts of India, the Kerala branch also struggled with implementing integrated education. Their challenges and struggles remained the same across state boundaries. Here's an equalizer, I thought: from up North to down South, there may be many cultural differences but reluctance to accept disabled people remains a common denominator. We really have a long way to go!

Dehradun, the new capital of Uttranchal, is a long way from Chennai. I came here to visit another Govt. of India run agency, the National Institute for the Visually Handicapped (NIVH). Unfortunately, I left this institution being reminded of all the horrible things one associates with bad government. While the administrators lauded the research and vocational training programs they had implemented (a special matter of pride for them was the cricket ball they had invented that enabled the blind to play cricket), I could clearly see great discrepancies between their version and the facilities that the children actually had. Visually impaired children were still using the almost obsolete Braille slates in the absence of Braille printers and computers. Meanwhile, the planners lived in their dream world, full of the glory of their imagined achievements.

In contrast, just a few miles up the road, I was impressed by how a small private institution, Sharp Memorial School for the Blind, was able to provide a refreshing environment for learning to visually impaired children. Established in 1887 in Amritsar by Annie Sharp, an English woman (it is the oldest school for blind children in India), the school moved to Dehradun in 1903 upon Mrs. Sharp's death. The school supports about 120 children and provides clean living quarters to those without homes. Mr. Samuel, the Principal, told me how worried he was about the future of the school since one of its major donors from Germany had decided to stop funding due to their lack of financial resources.

Back in Delhi after visiting these far-flung places, I was eager to find a model that might serve to educate even more disabled children. My search led me to the Amar Jyoti Rehabilitation Centre, founded by a dedicated educator, Dr.Uma Tuli. Amar Jyoti practices what many in India preach: inclusive education for disabled children. Among its 600 children, nearly half are disabled, and learn side by side with the able-bodied children. Inclusive - also known as Integrated - Education has been supported by the government of India in principle; however, the implementation has been slow. Segregating disabled children from the mainstream has been an accepted practice until recently, when educators started raising concerns about the profoundly negative results of such practices in the education system.

The Persons with Disabilities Act (1995) in India mandates that no school, private or government, shall discriminate children with special needs yet the implementation of such a mandate is best observed in its absence. Special education in India is still in its infancy and the end of segregation for disabled children does not seem to be within an easy reach. My travels made it clear that it is not only the lack of resources to meet the special needs of these children but also the social attitudes toward disabilities that remain to be formidable challenges.

The children that I met on my trip at the various centres were the lucky ones. At least they were given a chance to learn something that their able-bodied brothers and sisters took for granted. I thought of the millions in remote areas who had no access to such institutions, in place that I did not have the time or resources to travel. It is here that most disabled people live; according to India's first ever published disability census report (Census 2001) released in August 2004, of the 21,906,769 physically and mentally challenged people, 16,388,382 live in rural areas. The National Sample Survey Organization (NSSO) in a study released in April 2004 has concluded that only 9% of the disabled people had higher secondary education and in rural areas less than 1% were enrolled in schools.

These numbers are staggering, given India's population of over one billion. My heart sinks at the thought of the scale of the problems that remain to be tackled. But my journey was uplifting too, helping me find fellow-travellers in the quest to tackle the problems. Their humanity was inspiring, encouraging me to do more. Notwithstanding the valiant efforts by committed individuals and NGOs to sensitise the public of the plight of children with disabilities, much remains to be done. But perhaps, with their dedication - and the support of others near and far - there is still hope for the light that will illuminate the grey zone.