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Hi, my name is George Abraham and welcome to Eyeway Conversations. My guest today is Akhil Paul from Sense International India. He is the Executive Director. Hi, Akhil, welcome.
Hi, George. Thank you very much. You've
You've been working with Sense International for many years and in the India chapter and what got you interested in the area of deaf-blindness?
I was working with National Association for the Blind, looking after their rural rehabilitation projects across the country. During that time, we used to come across children and young adults and adults having more than one disability, that is along with visual impairment or blindness, additional disabilities. So that was the beginning and we were completely unaware what to do with them. So we used to cover them, just as plain blind people, provide them support as a blind person would need. But we were unable to provide the communication support. And that always created a sort of, you know, question mark, and what we were doing. Luckily, they were visitors who came from Perkins School for the Blind and I was taking them around. We went to see three projects in India. At the end of all the visit, they said that, what do you think about all these people who have deafness as well? And I said, we are completely not in a position to do anything. And they went back and created a training of trainers- diploma course, a PG diploma course. Collected about 11 of us from across the world. I was fortunate to get that scholarship and do the course, which is still known as the VIMD, Visual Impairment with Multiple Disabilities. After coming back, it was way back in 1992. When I came back from Perkins, my sole purpose in all the training program was to look into the needs of people who are deaf-blind. But Sense did a feasibility study in India in 1995-96, Sense is a very old organization in in Europe. They are the largest in Europe. And they wanted to do something for deaf-blind people in India, because you might remember, late Beroz Vacha, the wonderful Beroz Vacha, Helen Keller Institute for Deaf and Deafblind. So she used to go to these deaf blind conferences and say that, you know, there is not much happening for deaf blind. That's how Sense came to India. And they did a feasibility study. Fortunately for me, when they opened up for position, I applied, I got it.
And deaf blindness is not very commonly seen around, you know, you see blind people, you see deaf people. But deaf blindness is something which the common man got limited exposure to. Is this something that happens from birth, or this is something that you can contract later in life as well?
Both, George, both, in fact, you might have heard about a syndrome called rubella syndrome.
Yeah.
Rubella is something which, you know, happens when there is a first trimester of pregnancy. And the mother gets infected. It's a very mild kind of infection, where you get some rashes, a little bit of fever. But problem happens when the first three months the embryo is developing. And there is nothing but only brain and the parts related to or attached to brain, the head and things like that. So the rubella affects the development of those things, which are developing the first trimester so that the growth happens for the full term. Growth happens, but the child when it is born, definitely comes up with more than one disability and mostly it is visual and hearing disabilities. And there are many other causes which happens congenitally. But there are also many things which are advantageously which happened. You might have heard about another syndrome called Usher Syndrome. Usher syndrome is where the person is deaf by birth, and then slowly starts to lose vision because of retinitis pigmentosa. So you might have heard about many children in deaf schools that every year, the glasses they wear become thick and thick, because the numbers keep increasing that is because of the usher syndrome. So and there are many others, almost hundred such conditions, which lead to deaf blindness, either before birth, or even after birth.
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So if parents have to kind of identify deaf blindness in their children, what are the common signs?
The most common thing is vision anyway, fixates, you know, little later after birth but hearing is something which is available by birth. Even children who are having late birth cry, we need to be careful with them, when there is loud noise happening around the child and the child is not waking up. That's another sign. And now things have come to-because of the technology and the growth and development in medical sciences- there are many equipments which can assess hearing in the child, I mean, newborn child, just hours after the birth, you can assess. So as the child grows, I think, in Indian conditions, I think the best, I would say place to see or, you know, get the indicators when the child is growing up, because we have so many activities going around in the house, if the child is not getting startled by sound or noise, or not getting attracted, when you're talking to the child, the child is not looking at you. So all these are little signs that we can immediately, you know, identify the child is having some issue with hearing as well as vision.
What are some of the things that you would advise parents of deaf blind children to do in early days to say, pass their milestones, for example, or get into mainstream life in the beginning?
The best thing parents can do is give exposure to the child as us as you would export, export any other child in the family, you know, don't limit them because they have some limited vision or limited hearing, we need to make sure that they get experience of the world around them completely as any other child would get. Because that's the first I would say duty of a parent is to do that. What happens is, we tend to become more protective, oh, my child can't see or my child can't hear, let the child not go, you know, do this particular activity or don't expose, don't take her out, all these kinds of things we do. So the first and the foremost is that if we accept that the child has these two limitations, we need to expose them as much as possible. And we need to look at places, take them to all the places where we would take other children, so that their understanding of the world increases. And something which is very common. Our Indian society is quite, I would say physical and verbal in talking, we use a lot of gestures, a lot of hand movements, head movements, body language, I think we need to continue to do that with children with deafblindness because that's where the total communication comes in. So these are very small things which we tend to, you know, sort of ignore- oh he can't hear so always talk, you know, just sign or gesture- no, use words also, they might have some hearing which we have not been able to, you know, assess, they might have a higher degree of loss, but a lower decibel, the child can hear. So we need to use all that is available to us. So, I mean, the best thing would be, the most ideal thing would be that we have some earlier identification centers like a state like Kerala, they have invested a lot in early identification and early intervention. I just hope that, you know, that becomes a reality in our rural PHCs and district hospitals as well.
You know, it's common sense in a manner of speaking that, you know, seeing and hearing are probably the most effective ways of gaining exposure to what happens around us. So, you've spoken a little bit about this in your previous answer. But are there anything specific that parents and family needs to keep in mind to make sure, given the vision and hearing deficiencies to ensure that information is being grasped and assimilated?
See, the world for a deaf blind child is actually limited to her fingertips, whatever the child could touch, that's the world for her. For us, it is, you know, the faintest noise, we can hear we know that the world is still there, or the slightest, you know, a building or a tree, we can see, we know that the world is there. But for them, touch is the most important thing. So when I said total communication, it includes gestures, you know, verbal language, sign language, physical touch, and everything that is possible within the reach of the child. Because I think almost 94% of our learning is through our vision and hearing.
What are the kinds of schools that deafblind children go to? What's the kind of education they get? What are the kinds of learning tools that are made available and what is the level and extent to which say a deaf blind child could be educated?
I'll answer the last point you asked first. There is no limit. There are, you know, recently, this last academic session, which started there's one deafblind boy from Nasik, who got admission in IIT Nagpur. So, there is there is no limit to that, when it comes to, you know, kind of education available, it depends on the child's residual abilities, if the child has some vision, we need to utilize as much as possible, or some hearing, we need to utilize that as well. Fortunately, it's a blessing that not all deaf blind people are totally deaf and totally blind. That number is you know, quite small. And that is one reason that most of the deafblind children do very well in inclusive setups, and there are some who are, I would say, not very highly functional because of their conditions, they do quite well in a special school. So, when I say a special school, these are schools set up mainly either for the deaf or for the blind, where a deaf blind unit sets in very well, because the communication is a major key for these children. So, for giving them you know, starting education is all through touch to begin with, and they have a calendar box system. So, like we have a period where you know, first period is prayer, second period is probably physical education, third period is language the fourth period is mathematics and this and that, all those kinds of things we have and we carry books like that. For deaf blind child, it is physical so there are calendar boxes. And and the teacher starts with picking up a object which you know, indicates that particular period. For prayer, there might be a map because all of them will sit together in the map. For time when they are going for music, they will be a small musical instrument or something. If there is a physical education, there might be a small piece of toggle, or for mathematics... all the objects which are used, they're there in the calendar box, and the child with the teacher proactively picks up and the teacher explains what it is and the child also slowly gets to understand that when I pick up a musical instrument, it is time for music. So once they finish that activity, they put the object back into the box so that it indicates finished. This is a simple routine that they follow to begin with, till they are at a stage where they can understand how days of the week work, how months work, seasons work. So all starts with a very simple kind of calander system.
So Akhil, is the pace of learning slower than, say the regular average child?
In the beginning, yes, because they need to cope with the language gap. So in the beginning it is quite slow. But once they pick up once they understand that every object, which is around them has a name and a purpose, every person who is with them has a name and a role in her life, then they pick up very fast and things go very fast, then there is no end. I mean, you cannot compare a deafblind child's education after say initial two years with any other child, because then the learning is very fast. So foundation is very, very important. And that's where the maximum time takes place. Even now, when we are working with Sarva Shiksha Abhiyan, what we are doing is the children who are at home, most of the samagra shiksha missions have started giving services to these children at home. What we are trying to tell them that don't make homebound. It should be home based education, preparing them to come to school. So we need to bring in all the elements of school education at home. So the child learns and comes to the school. They do not remain only in the home. And that's the reason we also did a lot of work on curriculum adaptation and training teachers how to adapt the regular curriculum for a child with deafblindness in the classroom.
Would it be okay for me to ask you to name some of the prominent established centers in India where deafblind children can be sent?
We have almost in 24 states we are working. Up till now, we have worked with almost 60 partners. So we've got four very strong regional learning centers. In western part, we have Blind People Association, which is doing a lot of work in center based work and also community based settings. Then we have a Spastn in Tamilnadu in Chennai for southern region. Then we have Akanksha in Chattisgarh, which is doing the eastern part. And we are also we also have National Association for the Blind Delhi. Looking onto the northern part. These are the regional learning centers. But in every state we have one state learning center as well. So our ultimate objective, George is that no parent or no child should travel more than a day to reach to a deafblind service for advice and support. So we have reached to 24 states.
What are the strategies and intervention facilities available if somebody encounters deaf blindness, say in his 30s or 40s?
Very good question. See if, you know, we were till about five years back, we were concentrating mainly on children and young adults. But suddenly we realize that, you know, with the children whom we started in 1997, they're actually now adults. And that opened up a new kind of platform for us. And we are now working on income generation activities. With all the adults, there is a adult deafblind network run with more than 280 members at the moment. And these are, I would say 70% of them have been with us, but 30% have joined later who have contracted deafblindness. Either they were deaf or blind and then contracted the other disability. They have come in new. It was quite difficult for our team members, our field workers and educators to actually train them because they were so dependent on one disability that was there with them to accept the other one was very difficult for them. And we need to work on many new strategies, you know, in the skill development program of Government of India, in the skill development centers, we worked with the curriculum departments and adapted the curriculum for bringing in these adults who have become freshly deafblind. So that's where we are concentrating now. Keeping in mind, we are also looking at the elderly population because as you know, India is going to be the capital for elderly population. And we don't have anything directly working with elderly. What we are doing is we are trying to work with organizations working with people with you know, aged homes and elderly people to give them them the understanding of how they can work and help elderly people who are, you know, deafblind because of spinal degeneration.
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Yeah, let's get to reading and writing. You did mention that people use their fingertips. So I guess Braille is possibly one option. But I also know of blind deaf blind people who communicate on Facebook, can they communicate on the computer through email and so on. So how does that happen?
Thanks to the technology, George. Thanks to the technology which opened up, you know, a new world for deafblind people. The same equipment which are being used by blind people. What we have done JAWS, which actually reads your screen. There is a Braille display unit, which is working with the JAWS. So whatever is there on the screen is actually produced in Braille. So that's a major kind of breakthrough. And we don't need to carry the whole sort of display board for Braille. Now, there are many Brailles, that can be attached through bluetooth to your computer, to your mobile phone, and you can communicate with the world. So that is a big breakthrough. And Samsung, we work with Samsung, I think about five years ago, to develop a new kind of, it's not a new technology, it's the morse code, but we opened it for deafblind. It's simply- it is on the mobile phone- there are two kinds of platforms on the mobile phone, the black platform is for a deafblind person, and a white platform is for person like me. So I will type my message which will be delivered to the deafblind, the black platform on the Morse code, the dash and there's the long dash. And every letter to letter, you will be amazed. I was very very amazed when we started working on it. And we developed the prototype, we started doing training of a deafblind adults, I thought that it will be the most difficult thing because smartphone cannot be accessed by a deafblind person where to touch and all those kinds of things. But that morse code made is very simple, it just need to hold the phone, feel that and anywhere on the phone, they just need to respond by doing the same morse code what they want to respond. And when it comes to me it comes as a text.
Who are some of the say role models or brand ambassadors, you know, deafblind people who have managed to become part of the mainstream and not only in India, but across the world. Some prominent names.
Oh, I will start with India's Zamir Dhale is one of the great persons in terms of, you know, the ambassador for deafblind people and there are two other colleagues of him Pradeep and also Aktar, three of them. There's Shrutilata Singh, who is a trained physiotherapist qualified physiotherapist, now she's working with us and advocacy lead person. We have Prabhakar who got the president award this year. His support to other deafblind people in training them. If you look at world level there are... I forget the name there is a lawyer who communicated and made sure that the policy changes in US for deafblind people. She met Barack Obama when when he was President. Then there was a gentleman who was part of the UNCRPD committee when it was being drafted and he made sure that deafblindness is included in the UNCRPD. There is Alice in Calcutta who is a great... she makes great cakes. She's a very good artists, she dances. Then there is a girl I forgot her name in Chennai. She is a great vocalist.
And our very own icon Helen Keller was one of them, wasn't she!
Absolutely, Helen Keller who can forget her. Yes! She's the path breaker.
Right. So again, it was wonderful and insightful listening you speak and there's a lot of very, very interesting information you shared. I believe there's a helpline for which Sense operates in India for family and people who are connected to deafblindness. Would you like to share that number?
That number unfortunately has been discontinued. I'll give you the website. And our website is live every day we check www.senseintindia.org and in that you can leave your message, there's a button to contact us and we will get back to you whosoever would like to contact us.
So I'll just repeat it www.senseintindia.org
That's correct.
Thank you so much., Akhil. Wish you the very best
thank you very much, George.
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