On the eve of Helen Keller Day, NT BUZZ speaks to director of Caritas Goa, Fr Maverick Fernandes to know more about deafblindness and how to increase support for children with vision and hearing impairment
ANNA FERNANDES | NT BUZZ
Q. What are some of the biggest challenges that children with deafblindness face in Goa?
A major challenge that children and young adults with deafblindness face is lack of accessibility. They do not have access to basic facilities like transport or education. A wheelchair user with deafblindness may not be able to access any utility buildings, government or otherwise, as the protocols for accessibility are not seriously adhered to during construction. Inaccessibility leads to exclusion as society does not take into account the needs of people with impairments. It is necessary to state the problem as well as solutions so that empowerment, participation, gender dimension and inclusion of deafblind personnel in society becomes a reality.
Q. As educators, how do you teach children the fundamentals of life, when they lack two of the primary human senses?
Not all children or young adults have total loss of vision and hearing. Some children have residual hearing or vision but often they are taught through sign language (through sense of touch), braille, and the most importantly through textures. Our main focus is to teach the children to be independent in life and this process begins from early childhood. The educators play a crucial role along with the parents by engaging in various adaptive activities based on the child’s current level and need. These activities focus more on providing sensory stimulation along with skill development of their motor skills, daily living skills, cognition development, etc.
Q. What needs to be considered when communicating with individuals with deafblindness?
It is essential for our educators to create awareness about communication through sign (touch) language or through textures. It is very important to inform the person with deafblindness about your presence around with a gentle touch on their hand. A person with deafblindness is very sensitive to touch so we have to keep in mind that for a new person to build rapport and a strong bond with the child is quite difficult and takes a lot of time. Since the child’s level of understanding is not quite developed, we have to focus on both their expressive and receptive modes of communication and this is done through real objects, a communication board, through touch, gestures, body language, sign language, facial expressions, etc.
Q. How have resources for children with deafblindness and their parents or caregivers changed over the years?
Technology has made life easier for special persons. There have been various advancements in the different assistive devices being used by persons with deafblindness. Earlier, a visually impaired individual would use a white cane; now, they use a ‘smart cane’ which works on vibrations. Besides, mobile phones, wheelchairs, braille, and CP chairs specific to deafblindness are also available.
Q. What are some misconceptions that are still believed about people with deafblindness?
The biggest misconception is that children or young adults with deafblindness can never be independent and will always be a burden for the family. This is absolutely wrong.
We have some young adults with deafblindness who are answering class 10 and class 12 exams through distance learning, coached by our educators, whereas others have completed their class 10 and class 12 exams with flying colours and are presently pursuing further studies. One young adult is self-employed as he successfully manages his own general store, which we helped him with under our entrepreneurship programme for special persons.
Q. For youth who are deafblind, what are some challenges that arise when transitioning to adulthood? And how can they make a successful transition?
The major challenge is to be independent and have a successful career either working or setting up their own business. If the necessary and right support is given to adults with deafblindness, they can achieve wonders. There are also young adults with deafblindness who are married and have their own family.
Q. How has the pandemic and subsequent restrictions affected people with deafblindness?
The COVID-19 pandemic has thrown life out of gear for everyone, including children with deafblindness. The children being mostly at home have more behavioural issues, as a result they get restless. Besides, the online mode of education is not that effective since the educator cannot work hands-on with their child. For a child with deafblindness, a sense of touch is most crucial to capture concepts which becomes difficult in these circumstances. Nevertheless, parents are playing a crucial role to support online classes for the development of their child
Q. Is Goa accessible and inclusive to people with deafblindness?
Goa has made some progress in comparison with the past but not with the standards to be achieved. None of our resource rooms in schools are equipped or inclusive for children with deafblindness. Transportation is another major hurdle for accessibility.
Q. What advice do you have for parents, educators, and caregivers of children with deafblindness?
Every child is unique. Children with deafblindness are unique too, with a lot of talent. If we focus on their strengths, they can achieve anything. We would like to advise students to opt for special education with a focus on working with children with deafblindness.
What is deafblindness?
Deafblindness is a condition in which an individual has combined hearing and vision loss leading to complex problems in communication, mobility and accessing information.
A person receives as much as 94 per cent of information about the environment through the senses of sight and hearing. A person with deafblindness cannot obtain this 94 per cent. Children with deafblindness, therefore, belong to one of the most vulnerable groups of disability across the world.
In addition, the social stigma attached to the disability and poverty further marginalises children with deafblindness and forces them into isolation and dependency. There are an estimated 4,85,000 deafblind persons in India.
Significance of Helen Keller Day
Celebrated annually on June 27, Helen Keller Day honours the life and achievements of Helen Keller, American activist, author, and suffragist who, struck deaf and blind as an infant, went on to change society’s perception of what it meant to be disabled. Helen Keller Day commemorates her birth on June 27, 1880.