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Disability News India (DNI), is a disability News service dedicated to providing a quality up-to-date information to the Indian Disability. DNI's news section is updated two times a week, though we also add breaking stories as and when they occur. DNI– SubscriptionDisability News India – June Issue
"Accessibility of the environment is a major challenge for Deafblindness:"Akhi Paul
Akhil Paul is the founding Director of Sense International (India), an organisation that was set up in 1997 to support the development of sustainable services for people with deafblindness throughout the country. Akhil has 18 years of experience in the disability sector and he is MSW from Indore School of Social Work and also a PG Diploma in Multiple Disabilities from Perkins School for the Blind, Boston (USA). He shares his views on Deafblindness and his recent experiences with Aqeel Qureshi in an interview for DNI.
What is the definition of Deafblind / standard?
Deafblindness is a unique disability. It is sometimes known as dual sensory impairment or multi–sensory impairment and is more than a combination of visual and hearing impairments. It is important to stress that many deafblind people may not be totally deaf and totally blind. Many of the deafblind people have some remaining hearing and vision. Some, though, have complete loss of both senses. An individual is called deafblind when neither his/her sight nor hearing can compensate for the impairment of the other sense – in other words, they cannot function either as a deaf person or a blind person.
This population is described as "a heterogeneous group who may suffer from varying degree of visual and hearing impairment, perhaps combined with learning difficulties and physical disabilities, which can cause severe communication, developmental and educational problems." Department for Education Service Policy Statement, UK Govt, March 1989
Who is Deafblind?
In functional terms deafblind children and young people may include those with:
Auditory and visual impairments
Auditory and visual impairments and other significant disabilities
Central processing problems of vision and hearing
Progressive sensory impairments
A significant visual impairments; and a possible loss of auditory processing mechanisms (associated with severe physical disability or severe cognitive disability) and severe communication delay
What are the challenges facing a person who is deafblind?
Deafblind children and adults mostly face difficulties in orientation and mobility, communication and learning. Accessibility of the environment is a major challenge. Due to lack of awareness and understanding about needs of deafblind people, they are often excluded from educational programmes.
How is the situation of deafblind people in India?
It is estimated that the number of persons with a disability in India is over 90 million. There is no data available regarding the size of the deafblind population in India as to date there has been no comprehensive study or research to determine the true incidence. Estimates, based on information gathered from community based projects, indicate that there could be more than 425,000 deafblind/mu1tiply disabled people in the country.
At present, approximately 2,500 children and adults in our country are receiving educational services through the 37 programmes supported by Sense International (India) in 19 states.
Are the government initiative enough for developing the situation of people with deafblind?
Deafblindness is not yet recognized by the Persons with Disability Act (Equal opportunity, Protection of Rights and Full Participation), 1995. We, along with our 37 partner organisations, families of deafblind persons, professionals working for deafblind persons and adult deafblind persons, are trying hard to get deafblindness recognised as separate category of disability under PwD Act, 1995.
With adoption of the UN convention on rights or persons with disability, where India is a signatory, hopefully we will able to drag the attention of Govt. of India towards the needs of deafblind persons.
What are the particular challenges facing the family, teachers and caregivers of a person who is deafblind?
Families are facing difficulties in accessing appropriate services for their children. As there are only 37 programmes in India catering to the needs of deafblind children, families are finding it difficult to get services in rural areas. Sense International (India) has a vision to establish at least one programme in each state of India, so that families need not travel more than a day to get services for their children.
The professionals working for deafblind children are facing major problem of early diagnosis and certification for the disability. Most of the children are forced to get 2 separate certificates for their vision impairment and hearing impairment.
Since Govt. of India is not providing funding support to NGOs for deafblind programme, many NGOs are not in a position to start services, though there is a need.
What are the educational needs / practices for children who are deafblind?
Education for a child or youth with deafblindness needs to be highly individualised; the limited channels available for learning necessitate organising a programme for each child that will address the child's unique ways of learning and his or her own interests; Assessment is crucial at every step of the way. Sensory deficits can easily mislead even experienced educators into under–estimating (or occasionally over estimating) intelligence and constructing inappropriate programmes.
Helen Keller said, "Blindness separates a person from things, but deafness separates him from people." This potential isolation is one important reason why it is necessary to engage the services of persons familiar with the combination of both blindness and deafness when planning an educational programme for a child who is deafblind. Doing so will help a child or youth with these disabilities receive an education which maximises her or his potential for learning and for meaningful contact with her or his environment. The earlier these services can be obtained, the better for the child.
The challenge of learning language is perhaps the greatest one that children who are deafblind face. It is also the greatest opportunity, since language holds the power to make their thoughts, needs, and desires known. The ability to use words can also open up worlds beyond the reach of their fingertips through the use of interpreters, books, and an ever increasing array of electronic communication devices. In order to learn language, children who are deafblind must depend upon others to make language accessible to them. Given that accessibility, children who are deafblind face the challenges of engaging in interactions to the best of their abilities and of availing themselves of the language opportunities provided for them.
In the past– deafblind children were assumed to be profoundly retarded as they were unable to communicate to anyone. Of course there were always the few highly intelligent children, but usually the child born deafblind was considered, in most cases, uneducable.
Time has shown, however, that, given the appropriate teaching and attention, many of these children can achieve a potential never dreamt of before. "The overall aim of a school for deafblind children is to enable each child, according to his/her ability to become a happy individual and an integrated member of society".
How assistive technology will help people with deafblindness?
The over all aim to provide assistive technology to any disabled person to maximise their potential. Deafblind persons also need assistive technologies to maximise their potential. They need assistive technologies available for blind persons, deaf persons and some times persons with physically handicapped if there is any associated conditions.
Adaptive technology helps the deafblind person through many ways.
1. Helps them in doing their work independently without any other's support.
2. Helps in increasing the communication level of the deafblind child
3. Helps in the mobility of the deafblind child
4. Makes the child secure and independent in an unpleasant atmosphere.
How to assist people with deafblindness?
The biggest assistance can be the "recognition" of deafblindness in the Acts & Legislations in India. Deafblind persons need assistance in mobility, access to communication and activities of day to day living. We use tactile support method with deafblind person, means we provide assistance or support using touch.
Are there any deafblind interpreting services available in India?
There are no deafblind interpreting services in India. But recently, in 21 February 2007 Sense International (India) has appointed India's first official interpreter for our deafblind Advocacy Officer.
What are laws related to people with deafblind in India?
There is no specific law for deafblind people in India. Sense International (India) is trying to influence the Govt. of India to include "deafblindness" in Persons with Disability Act, 1995. There is some silver lining as deafblindness is covered under multiple disabilities in National Trust for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act, 1999 and it has also got a mention under the Aids & Appliances scheme of Govt. of India.
Deafblindness Status report – March 2007 Read More...
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