As a young boy, Wayas - who is from Bankabari in Uttar Pradesh - lived in total isolation. His only connection with the outside world was the sound of the spinning wheel on which his parents worked. With no sight and very little hearing Wayas could not communicate with the other children, who made fun of him if he stepped out of his small dwelling.
Wayas is just one of the 444,000 deafblind people in India. (Estimates made by Sense International India after door-to-door survey). Many deafblind people may not be totally deaf and totally blind but the combination leads to great difficulties in anticipating events, in recognising people, places, objects and activities.
As Akhil Paul, Director of Sense International India, explained at a disability workshop, "If you take the colour blue and then take the colour yellow and mix them you get a new colour - green. But you cannot really separate the two colours. In deafblindness the two disabilities of deafness and blindness come together to create a third disabling condition called deafblindness. But it is not possible to have one teacher take care of the blindness aspect and one teacher for the deafness aspect and then presume that education for the deafblind is complete."
Deafblind children often remain in complete isolation because this impairment requires a thoughtful and unique educational approach. They require specific rather than just special interventions to reach optimum capacity. The problem is compounded in India, where diagnosis is often not appropriately done, and because a paucity of options for education and training make it extremely difficult to adopt the one-to-one approach.
However various organisations have now begun programmes that can help sensitise officials - and more importantly, train teachers, caregivers and others in the community - on what deafblindness is and how they can best integrate deafblind children into mainstream education.
One of the ways in which Sense International India is reaching out to the deafblind in large numbers, especially in the remotest regions of India, is by optimally utilising available resources and infrastructure through the Sarva Shiksha Abhiyan (SSA), the government's education-for-all programme. SSA's framework for education is an inclusive one, and contains provisions for educating Children With Special Needs (CWSN), Sense International (India) has aligned itself with the scheme and is working in five states focusing on the specific educational needs of deafblind children in classroom settings.
A preliminary step in this alignment is active screening and early identification of deafblind children. Unlike single-category sensory disabilities, deafblindness is not visible. Deafblind children are often misdiagnosed or wrongly identified as children with autism or with intellectual and developmental disabilities. Sense International (India) has developed simple screening formats that take less than 15 minutes per child to detect deafblindness.
Another crucial contribution by Sense International (India) to SSA is to sensitise and train primary school teachers. Since each deafblind child is distinctly different in terms of needs, characteristics, skills and traits teachers need to develop distinct child based approaches. For this simulation exercises are conducted. There is one in which teachers are blindfolded and made to wear ear plugs so that they realize the challenges that deafblind chidren face. In another exercise the teachers may wear special glasses that can simulate certain conditions like retinitis pigmentosa. In another exercise the teachers work in pairs. One partner is blindfolded, given ear plugs and is asked to communicate with the other partner without using words.
Besides these exercises, lessons are also provided, explaining how to work with different age groups and how to adapt the school curriculum for those with less vision and hearing. This may involve providing text material with large font sizes, or in making the lesson more tactile, or using the local sign language.
A deafblind student using the special hardware Brailler at the Helen Keller Institute of Deaf and Deafblind in Mumbai. (Picture credit - www.helenkelleridb-mumbai.org
In Kolkata, the Society for the Visually Handicapped (SVH) stepped in to help deafblind children at the request of the Missionaries of Charity. The sisters at the mission were bewildered by the behaviour of one of the young boys in the orphanage they ran. He jumped up and down continuously or else stood bent forward with hands outstretched. As if he wanted to clutch on to something solid. Was he autistic or mentally challenged. A series of functional assessments on him conducted by the Society for the Visually Handicapped revealed that he was deafblind. He had low vision only in one eye, partial hearing and was also speech impaired.
SVH successfully set up a special classroom for the deafblind within the crowded confines of the orphanage, thereby demonstrating how children once deemed to be mentally challenged can be helped to develop their potential even with vey limited infrastructure. The idea behind a special classroom was to implement a routine that gives the children a sense of what classroom activity is all about. This could help prepare the ground for children being sent to school at a later stage.
One of the activities undertaken was called Circle of Time, in which the children sat in a circle with a round table in the middle. They touched one another on their left and right sides to know who is sitting next to whom. Sometimes a ball was passed around or song sung to enable them to get a sense of direction. This activity heightened social contact as the children in the orphanage seldom ventured out of the premises and had very little social contact with others.
SVH is using this model in some other orphanages also, thus enabling other organizations to benefit from its own experiences - and providing a cost-efficient way to reach out to large numbers of affected persons.
In Mumbai, the Helen Keller Institute for Deaf & DeafBlind (HKIDDB) has mainstreamed deafblind children by enabling them to access computer training. While the hearing impaired can be taught to operate the computer using their vision and the visually impaired can learn to operate the computer using screen reading software, the challenge posed by the multiple disability of deafblindness is considerable.
The answer to this came in the form of harnessing new technological advances and developing a special module which makes use of a piece of hardware called the Refreshable Braille Display Unit. This piece of hardware is attached to the Central Processing Unit of a computer via USB cable which gives the output in Braille (six or eight dots). Its function is like a monitor which gives the output in visual graphics. The Braille Display Unit gives the output in Braille dots and refreshes the Braille dots for each line that is changed.
Deafblind students who want to acquire such access to computers must first develop their skills in Braille, typewriting and Advanced Language. Students with three kinds of disability - blind, deaf and deaf with low vision - are taught together in a manner in which they learn to communicate effectively with each other. The training and giving of instructions is a well coordinated effort and total communication that uses both speech and sign language and tactile communication simultaneously is employed. In effect this practice spurs social inclusion because the blind serve as the ears for the deafblind/deaf and the deaf in turn serve as eyes for the deafblind/blind students.
The tactile communication happens in different ways: on a one-on-one basis (teacher signing to one student); or by transference of communication from one deafblind child to another; or by two hand communication (where the teacher signs to two deafblind persons sitting on either side). Using one or more of these communication techniques the students are explained the theoretical aspects of computing. Later on they are given hands-on experience where the teacher has to give one-to-one attention.
The HKIDDB Rangoonwala Braille Press Training Centre is also equipped with Braille Printers that can take a print command and give the Braille output of any number of pages and any number of copies. Other Braillers and special printers enable the deafblind students to produce tactile/graphic materials such as greeting cards, calendars, educational material and books in Braille.
Zamir Dhale, one of the first deafblind students to develop computer skills, now works at Sense International (India) as Advocacy Officer for the DeafBlind Community all
over India. Through the demonstration of services he spells hope for thousands of deafblind children living amid poverty in the villages of India. Today the young boy in the
Missionaries of Charity's orphanage helps his teacher to make sandwiches for the class, and young Wayas in Barabanki attends lessons with the other boys in the
madrassa. He has learnt how to make an antenna to catch the radio frequency, and his time is in demand because of this ability.