95% of what we learn is through our eyes and ears. Imagine what it is like to be deafblind.
Deafblindness is a unique disability that combines varying degrees of both hearing and visual impairment. All individuals with deafblindness experience extreme challenges in communication, mobility and accessing information about the world around them. Many people with deafblindness also have additional physical and medical conditions. Persons with deafblindness face neglect and discrimination owing to their inability to communicate and relate to the world. They are thus denied even the basic human rights like education, medical care, amongst other needs that are taken for granted by most of us.
There is a lack of awareness about deafblindness amongst the government, general public and other NGOs working in the area of disability. Due to this situation many children and adults with deafblindness are left without support and are even incorrectly considered to be severely intellectually disabled. What most people do not know is that children and adults with deafblindness can become active members of society if provided with the right care and support.
Causes of deafblindness
There are multiple causes for deafblindness like:
Premature birth, low birth weight, birth injury, respiratory distress such as Hyperoxia and Hypoxia, jaundice, fits, nutrition (malnutrition?), infections such as Meningitis and Encephalitis are some of the common causes during birth that may lead to deafblindness.
Rubella or German measles can be transmitted from an affected pregnant mother to its foetus.
Usher Syndrome is a genetic disorder with varying degrees of severity and progression of symptoms, characterised by hearing impairment and an eye disease called retinitis pigmentosa.
Another cause for deafblindness is a syndrome known by its abbreviation CHARGE which is, Coloboma, Heart defects, Atresia, Retarded Growth, Genital differences, Ear anomalies. The incidence of CHARGE is about 1 out of 10,000-12,000 births.
Deafblindness can also be caused by Cytomegalovirus, belonging to the herpes virus group. If it is contracted by a pregnant mother, itcan be transmitted to the unborn child. Poor nutrition, unbalanced diets and trauma during pregnancy can cause birth defects leading to multiple disabilities.
We are the only national - level organisation supporting needs-based services which enable children and adults with deafblindness to overcome the challenges caused by deafblindness. Sense India's key objective is to provide the information, guidance, capacity building and training needed along with being committed to support persons with deafblindness and multiple disabilities and their families by raising awareness and campaigning for their rights, opportunities and services throughout the nation.
Sense India has specialised expertise in the domains of deafblind communication, mobility, accessible information, assistive devices and rehabilitation. With its unique technical know-how in the field of deafblindness and multiple disabilities, Sense India uses a multi-pronged approach since 1997. This includes technical assistance to its partner NGOs and direct training of their staff to work with children and adults with deafblindness and multiple disabilities.
The well-planned and consistent efforts of expanding services with the help of a network of grass - roots organisations and building their capacity on deafblindness has enabled Sense India to reach out to more than 78,000 individuals with deafblindness in the last 23 years. The partnership approach of directly working with local organizations has resulted in the setting of 61projects in 23 states and is one of the most cost - effective and innovative models of service delivery. With our nation-wide initiatives, Sense India is accredited to the United Nations and has consultative status on deafblindness. Sense India has started to provide assistance in South-Asian countries based on expertise in the field of deafblindness in India.
Back in 1997, there was only one school in India providing education and other services to 23 children with deafblindness, in a country where there are an estimated 500,000 children and adults with this multi-sensory disability. To address this dire need, Sense International India, also known as Sense India was established in 1997 as the first national NGO in India to support the development of comprehensive services and training for people with deafblindness. Currently Sense India is working in 22 States of India through a network of 61 partner NGOs. Our work is transforming the lives of more than 78,000+ people with deafblindness - from isolation and neglect to communication, interaction and self-esteem.
We provide education for children with deafblindness, vocational training and livelihood support to adults, training and capacity building for families and professionals and other NGOs to work with children and adults with deafblindness. We also advocate for the rights of people with deafblindness with communities, NGO networks and government to ensure that this disability does not isolate them in the society and that they are able to earn a livelihood and lead a productive life.
Less than 16% of India's people with deafblindness receive any form of support. Most children with deafblindness in India have severe lack of access to any kind of education, while some are sent to schools that lack the necessary skills and tools to help them develop. Most children with deafblindness in India still remain in total isolation at home owing to this disability.
With expert support and training, people with deafblindness can learn to use any residual vision or hearing and other sense to understand their world and to lead full and active lives. At the same time, their families can receive the hope and support they need to make the best choices for their future and livelihood.