Society for the Empowerment of the Deafblind survey underlines gaps faced by community
In India, deaf blindness is not a separate entity under the Rights of Persons with Disabilities Act 2016. Deafblind people are clubbed under multiple disabilities and this has led to a lack of understanding and specific policies catered to their needs. The impact of this has been brought out in a detailed survey done by the Society for the Empowerment of the Deafblind (SEDB).
Saurav Ghosh, a person with deafblindness, goes to parties, loves shopping and has a creative streak. He is also deafblind, which makes his story something of an exception.
“With great difficulty, we looked after Saurav at home until he was three years old”, says mother Shipra Ghosh. “But when I went to a special school for deaf children for his education, they refused to take him as he could not follow the blackboard due to poor vision. When I went to a blind school, they said, ‘Sorry, Ma’am, we cannot work with him, because he is not verbal’.’
Thanks to the Helen Keller Institute for the Deaf and Deafblind in Mumbai, and in depth support at home, Saurav was able to overcome these barriers. Today he works at a NGO where he teaches children from marginalised backgrounds and is independent.
Survey highlights gaps across many areas
Saurav’s journey does not speak for the deafblind community at large in India. The reality is that children with deafblindness are up to 23 times less likely to be in school than children without disabilities, and less likely to be in school than children with other disabilities.
This is among the findings of a survey done by the Society for the Empowerment of the Deafblind (SEDB) in partnership with Chetana Trust, Chennai, and National Institute of Speech and Hearing (NISH), Thiruvananthapuram among 17 deafblind people. A small number but significant number says SEDB founder Zamir Dhale.
The report brings out the gaps faced by people with deaf blindness in India due to the lack of recognition of deafblind people as a separate entity under the Rights of Persons with Disabilities (RPWD) Act 2016. This includes gaps in critical areas like education, health, training and skill development, rehabilitation and essential support services.
In other countries I have seen so many deafblind people being successful and independent but here we cannot progress because of many barriers like inaccessibility of the environment and lack of services. We constitute 0.2 to 2% of the population of persons with disabilities , and experience restrictions due to barriers in communication and lack of access to assistive technology. – Zamir Dhale, Founder, Founder, Society for the Empowerment of the Deafblind
Key findings of survey
- 87% of those surveyed have knowledge about various assistive devices. However, many do not own them.
- 50% do not have smart canes.
- Nearly 79% work in the informal sector. About 45% are not paid on par with others. 25% said they are not paid.
However, existing policies and programmes for people with disabilities do not take into account the specific support requirements and the marginalisation faced by people with deafblindness. Deafblind people are not considered as a specific category of persons with disabilities under RPWD Act. Instead they are clubbed with multiple disabilities.
This has led to lack of specific data about deafblind people in India which affects policies and programs that ensure participation and effective inclusion. It has also promoted the misconception that the needs can be met with by simply extending the services that exist for people with hearing and vision impairments.
- Amend the Act to include persons with deafblindness as a separate category of disability.
- Train government officials, particularly ministries and departments dealing with information and communication, to adhere to web accessibility standards.
- Service portals should be audited by experts in accessible technologies with immediate effect. This is important as many service portals use CAPTCHA that are inaccessible for people with print disabilities.
- Ensure support services such as interpreter–guides.
Supplementary actions include training programs to develop interpreter-guides and tactile sign language interpreters, ensure accessibility, availability and affordability of quality assistive devices for all persons with deafblindness. Another important suggestion is rehabilitation services, focusing on specific needs of children and adults with deafblindness. This includes community-based rehabilitation services.
Watch in Sign Language
- Being Deafblind in a lockdown world – Guest column by Zamir Dhale, Society for the Empowerment of the Deafblind
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