We too exist (video)

The video opens with the logo of Sense International India, working with deafblind people. 

Akhil Paul : What we learn about 95% comes from what we see and hear.

The screen fades into a man walking down a school hallway. He is wearing a black jacket.

Akhil Paul : When both of these avenues are impaired, it’s very difficult to learn about many things in life. 

A blind man (later revealed to be Govinda) is walking on a pathway that’s surrounded by green trees. He is wearing a blue polo t-shirt and using a white cane. We can only see his back. In the next shot, he is at a roadside ice cream stall, happily engaging with the vendor and walking away. He is now eating the orange candy ice cream.

Akhil Paul : Deafblindness is a very unique disability which affects our vision and hearing both simultaneously. 

Akhil Mehta is the executive director of Sense international. He is wearing black glasses, has white and grey hair and beard and is speaking to the camera in a well-lit room.

A child with deafblindness is turning around the stairs of his school building. He is in a green school uniform and wearing purple glasses. A man is walking behind him.

Sachin Rizal : So, when a child is born with deafblindness, he or she will not be able to understand what is going on outside their parameters. 

The shot changes to a woman supporting two kids and walking hand-in-hand with them. One kid has a spiderman bag and trips slightly. The woman supports him in getting up. The other child has a green bag and is holding the woman’s other hand.

Sachin Rizal : So, the mother who is there may have to express or teach every single thing to the child. The child is not even able to understand whether the person who is coming to take care is his or her mother or not. 

Sachin Rizal is the head of Capacity Building, Sense India. He is sitting on a chair, wearing spectacles and black shirt.

The scenery now shifts to the lush green fields of Kamrup, Assam.

The birds are chirping and people are working the fields. Govinda who is deafblind is one of them. He is harvesting the crops.

Mehbubar Rahman : Govinda was around 2 years old when one day his parents identified him as suffering from high fever.

Mehbubar Rahman is Govinda’s friend and teacher. Like Govinda, he is from Kamrup, Assam. He is at the and talking to the camera wearing a black and white striped polo t-shirt.

Mehbubar Rahman : When Govinda was 2 years old, he got German measles which led to damage to his vision and hearing.

Akhil Paul : The parents didn’t know how to deal with this kind of situation and Govinda was completely in isolation. So, simple things like when our children require water or milk, when we start preparing milk in the kitchen, there are a lot of noises. There are a lot of visuals. In the case of Govinda, he is not getting all these environmental clues. He is getting only the milk which comes directly to his mouth.

Govinda is sitting on the floor. A woman is serving him food and directing his hands to the plate. He is eating with what looks like his family. 

Akhil Paul : Probably he is not prepared. If you close your eyes and ears and somebody puts something in your mouth, how would you feel?

In another shot, Govinda is now outside. The camera zooms in on him drying his face with a cloth. He is shirtless and wearing knee-length shorts. There is a close-up shot of Govinda in a dimly lit room.

The location changes to a school where there is a teacher engaging with four deafblind children. All of them are sitting around a table. The room is well-lit. There is a half a rainbow on the wall and a shelf which has files in it.

In a medium shot, the teacher is now holding one  hand of a deafblind child and directing him to an aubergine that he is holding in his other hand. 

Akhil Paul : When Sense International India started in 1997, the biggest challenge we had was to decide whether to start a school for deafblind children. And if yes, where to start.

Biju Mathew : There were only two institutions in India which were providing services to deafblind people — one in Mumbai and another in Chennai.

Biju Mathew is the director of Sense India. He is wearing a blue Sense International India’s t-shirt and glasses. 

Biju Mathew : We realized that if Sense International India started a centre of its own, it would be the third centre. 

Akhil Paul : After a lot of thinking and discussions, we realized that deafblindness is not a disability which is concentrated in one state more than another state, one region or a particular age group. It is scattered across the country. For something so scattered, it would be very difficult to create a central school for that. 

Biju Mathew : So we decided that we would work with smaller organizations, disability organizations, rehabilitation centres, and hospitals across India and build their capacity so that we are able to support more number of deafblind children. We are able to reach the unreached, reach the rural areas and we can step up and build a whole ecosystem of deafblind world.

There are visuals of deafblind children in Sense rehabilitation centres engaging with each other and learning. The setting is colourful. There are chart papers on the wall. There are desks for children. 

Uttam Kumar is the director at Sense India. He is wearing a yellow Sense International India t-shirt and glasses. He is sitting in his office, at a chair that’s kept near his desk. The desk has a computer system, notebook and pen on it.

Uttam Kumar : When we started reaching out to NGOs, especially those who are working in the sensory impairment arena as well as in intellectual disabilities, they started giving us some references about deafblindness. 

A woman is playing with a deafblind girl. The woman is clapping her hands while the girl is laughing and trying to emulate the clapping. In another shot, a man is testing a child’s hearing device then proceeding to open his notebooks. Next, a girl is lying on a bed with wires attached to her head while a man is sitting on a desk working on his laptop testing something on the girl.

A montage of polaroid photos of young Asha Patwal plays against an orange background.

Asha Patwal is a physiotherapy student from Rudraprayag, Uttarakhand. In a medium full shot, she is standing against a lush green background. She is using sign language to communicate.

Asha Patwal : I was born with congenital cataract, but I was able to hear. Later, I got a high fever. I was having problems with my vision. At the age of five years I went to school. There, I met Sumana Mam, my teacher. 

The shot changes to a medium close-up of Asha.

Asha Patwal : We went to Delhi for my surgery. After surgery, my vision got better. Then, I started learning how to read, write and paint. During one of the winter vacations, my family took me back home to Rudraprayag. At home, I got brain fever, which is meningitis. Both my hearing and vision started deteriorating and then I became deafblind. 

The screen changes to a byte taken from Asha’s teacher, Sumana Samuel which was recorded over a video call. Sumana Samuel is a freelance consultant (VI) from Dehradun, Uttarakhand. She is wearing a saree and is sitting on a white sofa.

Sumana Samuel : I requested Bajaj Institute to help Asha in her education. They said our deaf children can see so it is easy to teach them Indian sign language and we have no experience in teaching a blind child. Then I said I will give you 100% support. Please keep her for 15 days. The teachers there tried to teach her some basic sign language, then numbers, alphabets, colors, names, you know, a few things. And then at the end of the 15th day, I went back to Bajaj Institute and asked them – Can Asha continue her education? They said, Yes.

There are visuals of school children in uniform playing while some are eating lunch in the background. There is a girl in a wheelchair eating from a plate with a spoon.

Biju Mathew : Inclusion of children with deaf-blindness in the mainstream education system has also been one of the focus areas for Sense International India. Deaf-blindness as a unique disability was not recognized by the government of India. 

A woman is supporting a deafblind child from behind. The child is trying to climb a wooden ladder-like structure. It cuts to a close up shot of the child’s face focusing on the ladder.

Biju Mathew : It was very difficult for even professionals in the disability field to fathom what deaf-blindness is.

A woman is teaching sign language to 2 kids who are learning by grasping her fingers and figuring out the action.

Biju Mathew : So, the first challenge was to sensitize and you know get on board NGOs that are working on disability issues to accept and convince them that there is this combination and they can be supported. And the second challenge was then with the government.

Akhil Paul : At that time, Mr. Kapil Sibal was the Minister for Education and the advocates for disabled. We all went to meet him in this office and when we put up this question, he called his secretary and said can you read the Right to Education Act provisions and is it correct that there is no disability mentioned and the secretary said yes, there is no education of children with disability mentioned. So, the amendment was made and education of children with disabilities was also guaranteed under the Right to Education Act. And we were lucky to get into the training manual of these teachers where we could add a module on deafblindness for these children to go to school and how a teacher can work with the deafblind children in regular schools.

Biju Mathew : So as we started our services for deaf-blind children, we also realized that the children who come to the center or the educators who go into their homes providing home-based services, they get a certain hours of services. 

Uttam Kumar : We need to understand that we were a very small ecosystem at that time. And families and teachers become our strong tool to advocate for the rights of persons with deafblindness.

Voice over : Sense International India decided to establish three networks for three different groups. One is for parents, which is called Prayas.

There is a banner which has the logos of the different groups. In the next shot, parents are interacting in a seminar room.

Voice over : Second is for Udaan members. In this network, we have young adults with deafblindness. 

In the same seminar room, young adults, including Asha Patwal, are communicating with each other in sign language.

Voice over : The third group is called the Abhi-Prerna network. In this network, we have all the educators who have been associated from different parts of the country.

A montage of educators talking to parents, children and beneficiaries plays. All these groups are in one big seminar room.

Voice over : All these three networks were created by SENSE International India. So that all these three groups could come together and share their knowledge, information and also do some work in regards to advocacy.

In the seminar room, where the networking is happening, everyone is sitting on chairs facing five people who are sitting behind a table. People seem to be intently listening to the speakers who are using a mic. 

The scene cuts to Govinda communicating with another man using sign language.

Akhil Paul : Deaf-blindness by itself is not a problem. It’s the structure that we have around the persons with deafblindness. That’s what creates problems and that’s where inclusion comes very useful to us in terms of education, in terms of social life, in terms of economic life. Inclusion in every step of life will make deafblind person become a victorious person as you and I are in this society today.

Govinda is playfully talking to another man. A woman gives him bread. It cuts to Govinda negotiating payment with someone using hand gestures. 

There is a high-angle establishing shot of Shillong, Meghalaya.

Two kids are playing with each other while an older man, Aibok looks over. Aiboklang Sohtu is a teacher at Bethany Society in Meghalaya.

Voice over : Deafblindness is a combination of vision and hearing impairment. In Aibok’s case, he can see and hear a little. But in the future there may come a day when Aibok can lose his vision and hearing completely. He may become completely deafblind.

In a montage, Aibok is cutting vegetables, eating lunch with his colleagues, teaching a visually-impaired student and playing chess.

Aibok is sitting on a porch, speaking to the camera. He is wearing a black Adidas jacket over a white shirt and a yellow t-shirt. He is wearing blue pants. He is casually dressed.

Aibok : I was very sad at that time because I feel that my education has become useless because I cannot go anywhere. I have to stay in one place. And I have to depend on my parents. They have to come and give me food. And I feel very frustrated. Then slowly I came to know about Bethany society. And then I decided to go to that organization. So, when I went to that organization, I met Rosa. 

Rosa Wahlang is a trained professional on deafblindness. She is wearing a black top with colourful prints on it. She is sitting on a sofa chair. Behind her, there is a wooden wall with multiple frames on it.

Rosa Wahlang : He just kept on doing this to his hair. He kept on shaking his head (acts it out). I still remember. And his mother said, Just please do something. I’m helpless.

The screen cuts to Sachin Rizal. He is speaking to the camera.

Sachin Rizal : So, together with his teachers, we spoke to Aibok and tried to motivate him through counselling. It was then that he asked what kind of work he could do. 

The screen cuts back to Rosa Wahlang.

Rosa Wahlang : He has a Masters in Commerce. His process of rehabilitation was done. He had learned braille, he had learned how to do maths and he had actually begun to help the blind children in the hostel, in doing math, in the homework and everything. I could see that he had that capability. So, I went to the then principal and asked if Aibok could just come to help. Because he’s a 30 year old man and you know by the time when you’re 30 you would want to be doing something. She was so kind, Ms. Bertha. She said, why not? She herself is a blind person. So she would understand more. She said that it was a very good idea.

The screen cuts to Aibok writing on a white board with a marker and teaching maths to the children.

Rosa Wahlang : So we had involved him in some of the activities in school and slowly he was totally appointed as a teacher at the elementary level as a math teacher. This went on and he even, while doing all that, he even finished his B.Ed in Special Education, B.Ed in Visual Impairment in special Education.

Aibok is guiding his deafblind students. He is helping them use mathematical instruments and guiding their fingers towards them.

Akhil Paul : Our society is based on economics and every family member, their status increases when they start bringing money to the you know family kitty. So, why a deaf-blind person be, you know, away from that status and glory? 

The setting shifts back to Kamrup, Assam where Govinda is working the fields. 

Ishwer Majumder is Govinda’s brother. He is speaking to the camera against green fields.

Ishwer Majumdar : When I was young, I first realised that Govinda couldn’t see or speak. Also, he couldn’t hear, Our father taught him many things. I wouldn’t know what these things were as I was young at the time. So, since that time his responsibilities have come to me.

Govinda and Ishwer are getting on a boat.

Ishwer Majumdar : I have tried to teach him everything I know. 

Govinda and Ishwer are swimming in a pond. Ishwer is supporting Govinda. 

Sachin Rizal : When Sense international India came into the picture along with our partner organization, they provided training in communication skills, and orientation and mobility so that he could move from one place to another with the help of a cane easily. 

Govinda is walking by himself using a cane and seems happy. In the next shot, Govinda is sitting and weaving a basket all on his own in a dimly lit room.

Sachin Rizal : The Govinda you see now is skilled in weaving, roof making, door making and he makes beautiful ropes. 

Govinda’s friend, Mehbubar Rahman is speaking to the camera.

Mehbubar Rahman : He also supports his brother in every work. He helps in cutting jute and bringing them out of water. They also cultivate rice. There too, he shares equal responsibility with his brother. 

Govidna is harvesting in the field and making piles of the harvest.

Ishwer Majumdar : Sometimes he also goes to the market to sell things and to buy some things for the house. Only sometimes, not everyday, He would go out everyday to have tea. 

The screen cuts back to Biju Mathew. 

Biju Mathew : Govinda’s story also underscores the importance of community-based livelihood support for deaf-blind young adults. Sense International India is working closely with all our partners to encourage community-based livelihood opportunities for deaf-blind young adults.

A montage of deafblind people working and being trained plays. It cuts to a medium close up of Sachin Rizal speaking to the camera.

Sachin Rizal : Humans have some basic needs, like emotional needs, psychosocial needs or physical needs. When these needs are fulfilled then we can become a happy human being.

The screen cuts back to Rosa Wahlang.

Rosa Wahlang : There was this lady who worked in Bethany society who took care of the small children. Very kind. She was there for a very, very long time. So somehow Aibok and the lady connected and they fell in love. He fell in love with her because she was so kind to the children and to him.

The screen cuts back to Aibok’s medium close up shot who is smiling while speaking to the camera. 

Aibok : So whenever I proposed to her, she always rejected me because she came from the rural area and she did not have  any education.

The screen cuts back to Rosa Wahlang.

Rosa Wahlang : So that went on for a few years, two years I think. But he was adamant that he only wanted her. Then, I think she saw that and then finally they somehow settled.

Blinda Klein, Aibok’s wife, is sitting on a table with him. She is speaking to the camera while Aibok looks at her.

Blinda Klein : I told my parents about him. My relatives asked, “Could you not find someone normal?” I did not listen to them as I had decided, i like him. 

A montage of the couple hanging out together plays. They are sitting on the porch together. A kid in a purple sweater is giggling away and playing with another boy while the couple watches over them.

Asha Patwal’s file video plays on the screen. She is communicating using sign language. It cuts back to Uttam Kumar who is speaking to the camera.

Uttam Kumar : Asha, you know her communication is so sharp that when the United Nations World Data Forum announced a competition asking for a one minute video on why data is important from all over the world, only three videos were shortlisted. One of the videos was of Asha where she explained in one minute how deafblind persons are missing out from the census which leads to them missing out on various opportunities.

A montage of Asha’s pictures from the forum plays. She is smartly dressed and posing for the pictures with other participants.

The screen cuts back to Akhil Paul speaking. 

Akhil Paul : Just imagine, if we would have started just one school, where would it have been? What would Aibok or Govinda or Asha be doing today? Because the school would have been in Mumbai, Delhi or Ahmedabad. Today, as I sit with you, we are in 25 states, reaching out to almost 160 districts and to about 80,000 deaf-blind people.

The screen cuts back to Sachin Rizal speaking. 

Sachin Rizal : The process is still on. We are yet to identify more people with deaf-blindness who are still locked inside the room and they are shouting out loud to us just to tell us, please identify us and provide us with a need-based and right-based education.

Now, Aibok is speaking to the camera.

Aibok : I hope in the future, I can also do something for society. And it will be a source of inspiration and motivation for other deafblind and also for people with disability. Every one of us, we are different, and we have some ability. And if we have hope, and if we work hard, we can change the world. And we can change the way the world thinks about us.

Two blind girls are walking holding hands in their school uniform. In a classroom, a blind child is reading using braille. Aibok is playing chess with a man. Govinda is interacting with Sachin Rizal and laughing. He hugs Sachin from the side and both walk out of the camera.

The screen fades to black.

‘I too exist’ comes on the screen which changes into “We too exist” 

On a black screen, the following text plays –

Sense International India, also known as SENS India, is the only national level organization supporting needs-based services for children and adults with deaf-blindness and multiple disabilities enabling them to overcome the challenges in life. 

There are an estimated 500,000 people with deaf-blindness in India and Sense India is reaching out to more than 80,000 children and adults with deaf-blindness in the country.

We thank all our donors and supporters without whom our work wouldn’t have been possible.

Credits roll.