Many of us in society regard disabled individuals as either ‘helpless’ or ‘inspiring.’ For the longest time, every reference of Helen Keller was filtered via the lens of inspiration, i.e. “She has done so much despite being deafblind.” She was an author, activist, and lecturer, thus the most well-known deafblind person. Recently, a series of tweets, TikTok videos, and comments referred to her as “fraud/fake news.” Some of those posts believed that a deafblind person couldn’t write books, be eloquent, or learn several languages. As a result, she was referred to as phony, or worse, claimed to take credit while those around her did the job. These misconceptions are not new to persons with a disability. Doubting their skills or being taken aback by them is practically a norm. These perceptions about deafblind individuals stem from our profound ignorance of how they live, experience, and interact with the world (Raghavan, 2021).
The lack of awareness regarding deafblindness makes it difficult to identify and refer children who are deafblind at a young age. Deafblind children would benefit from proper screening and early diagnosis, which would allow them to get appropriate treatment and lessen the burden of dual sensory loss. The term ‘Deafblind’ refers to a “heterogeneous group of people who may suffer from different degrees of vision and hearing impairment, sometimes coupled with learning and physical difficulties, which can create significant communicative, developmental, and educational issues” (Department of Education Services, Policy Statement, 1989). This can include both children and adults who might have:
• Moderate to severe auditory and visual impairments, as well as other major disabilities.
• Vision and hearing central processing issues.
• Severe sensory impairment.
• Significant visual impairment, as well as a probable loss of auditory processing processes (associated with severe physical or cognitive impairments) and severe communication delay
According to a survey conducted by Sense International India (2020), an NGO that works to help deafblind individuals, there are over 500,000 people in India who live with Deaf blindness. Deafblind people who are deaf and blind access the world in a variety of ways, including but not limited to tactile sign language, braille keyboards, text messaging, and even screen readers.
However, many of their pathways and lived experiences are fraught with inaccessibility and obstacles. Deaf blindness presents several challenges in a person’s life, many of which impede their growth. Communication, information collection, orientation and mobility, and socialisation are all challenging for a person with deaf blindness, which leads to isolation. A person with normal visual acuity and auditory threshold may learn more than 95% of what they need to know. Deaf blindness impairs the transfer of information (seeing and hearing), which aids in the development of basic concepts and meaningful ideas about the world. Learning to communicate is the most significant hurdle that deaf-blind people confront, because communication and language provide them the ability to express their thoughts, wants, and wishes to others. Deaf-blind people also confront the difficulty of learning to move about the world as freely and independently as possible.
A recently released study by the Society for the Empowerment of the Deafblind (2020) based on a survey of adult deaf blinds emphasizes the country’s deaf blinds’ lack of access to different possibilities. Access to school, employment, assistive devices and equipment, financial inclusion, healthcare, and understanding of rights are some of the major challenges that the community faces, according to the report. Even though section 42 of the Rights of Persons with Disabilities Act (RPWD) Act, 2016 mandated all appropriate government agencies to ensure accessibility of information and communication, including sign language interpretation, the report pointed out that the Act is silent on specific support services for deafblind people, such as tactile interpretation and communication technology. Our access to interpreting services and assistance is limited. Providing Braille keyboards, social security, and support is one method to enhance access for deafblind persons (Desk, 2020).
However, more hospitals and clinics are referring children with deaf blindness to programmes that aid them. Helen Keller Institute for the Deaf and Deafblind, Mumbai, Blind Peoples Association, Ahmadabad, National Association for the Blind, Mumbai and New Delhi, Clarke School for the Deaf, Chennai, Holy Cross Service Society, TrichyTripolia Hospital in Patna, and others have Early Intervention and Identification Units. The senses of touch, bodily awareness, balance, taste, and smell can be utilised to access information and interpret the environment by those who are deafblind. To make information more accessible, the child’s Individual Education Plan (IEP) will need to include adaptations, adjustments, and/or changes such as big print or Braille print or reading material, and support from an interpreter or teacher who will give inputs for environmental information.
The India Deafblind Consortium (IDC) is a network of like-minded experts and parents who are actively analysing India’s existing deafblind situation considering the country’s social, economic, and geopolitical backdrop. IDC influences current policies in the country for the inclusion of deafblind people’s rights based on their findings. It advocates for:
• The dignity of those who are deafblind.
• Promotion of non-discrimination and equality of opportunity.
• Promotion of deafblind people’s rights so that they can reach their full potential.
• Enabling deafblind children and young people to participate fully in society in their local communities.
• Assist adolescents and youth with deaf blindness, as well as their families, in taking charge of their lives.
We should be better aware of resources for early detection, diagnosis, and intervention. We must acknowledge the importance of family life for deafblind people, as well as access to communication and care, educational programmes tailored to their needs, and specific aids and equipment. We should also encourage the recruitment of specialist personnel as well as equitable employment opportunities. We shall advocate for the protection of deaf blind people’s human rights.
Chandramohan, N. and Regan, S. n.d. Deafblindness. National Institute for Empowerment of Persons with Multiple Disabilities, Govt. of India. https://niepmd.tn.nic.in/documents/Book_on_Deafblindness_040820.pdf
Desk, L. (2020, August 19). New report highlights major gaps in access experienced by people with deafblindness. The Indian Express. https://indianexpress.com/article/lifestyle/life-style/deafblindness-disability-report-2020-6560937/
Raghavan, S. (2021, June 29). For deafblind individuals in India, grappling with t.. stereotypes and inaccessibility hinders true progress. Firstpost. https://www.firstpost.com/living/for-deafblind-individuals-in-india-grappling-with-twin-challenges-of-stereotypes-and-inaccessibility-hinders-true-progress-9762531.html
Rehabilitation Council of India. n.d. Deafblindness. http://www.rehabcouncil.nic.in/writereaddata/deafblind.pdf