Understanding Deafblindness with Akhil S. Paul

What is deafblindness and multiple disabilities? Akhil Paul, Executive Director of Sense International India, answers this and more – delving into training programs, research, and the unique challenges faced by people with deafblindness and their families

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Life is something which teaches us many things and like, we depend on our elders, our parents, some of us depend more as compared to others, some of us, our wings work better and we fly away, some of us, our wings are little small as compared to others, we continue to be in the nest.

Similarly, deafblind people also need support and some of them need lifelong support because it’s a lifelong condition.

It’s not something that you are having fever today and tomorrow you will be okay.

Deafblindness is much bigger than any other condition because it’s the combination of two.

You remember, when you add two colors, you don’t get traces of one color and the other, you actually get the third color, that’s what happens when visual impairment and hearing impairment come together.

You get a third very unique and very difficult disability called deafblindness.

Different organizations over the period of about two decades have taken up deafblindness and visual impairment, multiple disabilities as two major streams of work.

Like, Perkins School for the Blind, which was majorly working for people with, children with blindness, they added multiple disability, which also included deafblindness.

Earlier it was known as deafblindness, now it has been termed as VIMD, which is Persons with Visual Impairment and Multiple Disabilities.

For Sense International India, we stuck to deafblindness and multiple disabilities.

So deafblindness is, we are very clear when there is combination of deafness and hearing impairment, deafness and blindness, which is coming on the way for education of the children, we will call it deafblindness.

And then when we went to multiple disabilities, which also includes deafblindness, it can be any disability which is communication wise, creating a barrier for children towards education.

So, we have made it very clear, it can be cerebral palsy with visual impairment, cerebral palsy with hearing impairment, which creates a huge sort of barrier on communication, we’ll be happy to, you know, work with those children and guide them further.

So, that’s what we have done.

Generally, when you talk about deafblindness, people think that we are talking about totally deaf and totally blind person.

I mean, that’s what has been portrayed because of Helen Keller.

And there have been couple of movies in India, recent, I mean, not so recent, but a recent movie is Black, where Rani Mukherjee acted like a deafblind girl and her teacher is Amitabh Bachchan.

But there are various kinds of deafblindness, it’s, it’s a spectrum, like autism is a spectrum, deafblindness also is a spectrum where you find people can be totally deaf and partially sighted.

There will be people who are totally deaf and totally blind, there will be people who will be partially deaf and totally blind, and then there will be some who will be functionally deafblind, means their eyes and ears would work normally, but the powerhouse or brain which sends, which receives signals and you know, gives us order to perform functions, that there is some problem, so they are functionally deafblind.

So these are various categories of deafblindness.

Do you provide training programs for individuals seeking to work with persons with multiple disabilities?

We have our two courses running separately, one for deafblindness, two year diploma and two year diploma on multiple disability.

The multiple disability is more focused on cerebral palsy and physical impairment. So the problem with RCI is that they have tried to bring both together, but they have not done justice in terms of what should be focused when it comes to multiple disabilities, so that’s a big problem.

So we wanted RCI to continue with the deafblindness teacher training program, because it was very focused to children who have combination of vision and hearing impairment and other disabilities to go on and work with those children.

But multiple disabilities is, I mean, it’s focused more on cerebral palsy and physical impairment, so we thought that it is, suppose I am with cerebral palsy, I have a little bit of communication need as well, my communication need and mobility needs are met. I can go to any school, but if I am deafblind, the story is totally different.

So that’s, that’s the problem and we are training our educators.

We have online courses where we talk about deafblindness and also multiple disabilities so that they don’t, you know, think that deafblindness is, you know, as as something which is multiple disability and vice versa, those are two separate, there are specific needs. There are unique needs of both these groups, which we would like to make them understand and follow it forward.

Are there any current research initiatives focused on understanding the causes of deafblindness?

Haan..Scientific research has not been done.

You will be surprised, Ritika, that 19…up to 1970s, we used to have something called the rubella vaccination.

We used to give MMR – Mumps, Measles and Rubella vaccination.

Somewhere down in 72’, 73’, uh government did a study which was based on a hospital for 100 people, they did a study on 100 mothers and came to the conclusion that there is no rubella in the country.

There was no one in that particular hospital with rubella syndrome, who had rubella vaccination during pregnancy, so that was stopped.

Thankfully, in 2013-14, we started and rubella is seen as one of the major cause of deafblindness in the, in the country. Where we work, wherever we go, we do for clinical, go for clinical assessment, we come to know that it is majorly rubella because everyone says the child is by birth like this.

And second cause is Usher syndrome.

Usher syndrome, as you know, is a syndrome where person is born deaf and slowly loses vision because of Retinitis Pigmentosa, so the deafness ushers in blindness.

That is also, about 6% of deaf population is Usher positive, so all those children in Deaf school you see who wear thick glasses, there will be a time when they will have serious visual impairment or no vision at all.

So these two causes are major for, as far as our country is concerned.

What is the estimated number of deafblind individuals in our country, based on available statistics?

We have guesstimated, it is not something which we have done sort of scientific survey, it is 0.04% of the population.

So in a population of 1 lakh, we get around 40 to 45 people with visual impairment, multiple disabilities, deafblindness together.

So, and we have been literally fighting with the government to include deafblindness as a separate category in the census.

What challenges do parents of individuals with deafblindness typically face?

Unfortunately, the medical fraternity is still not geared up that how to break this news of child having an impairment or disability.

And particularly the severe the disability, lack of words in the medical fraternity.

They just, you know, they, they make sure that it is given just like that or they give false hope.

They will say, come after 6 months, we will do some test, he will get better.

In 4th year, he will get better, like that.

So parents are in the hope, obviously every parent has to have hope.

They are in the hope that the child will get better.

So early intervention and early identification, which is, I mean, very accurate, is very important.

And it, now the time is, we need to start telling the parents that look, these are the high risk areas and there will be a possibility your child might end up with hearing impairment or visual impairment or both.

It is very important.

Now the technology is available with us.

So we are almost having about 20 early identification programs being run through district hospitals in various states, where we have this very small equipment, you know, it is very small equipment which uses like an EEG, so you put the cathodes and hearing impairment you can detect in newborn children, even one hour old children.

Vision takes time because fixation of vision takes about 2 months.

The bigger problem we are facing is, in our Indian culture, the mother goes to the, her parent’s family for delivery.

Now once the delivery is done, they move back to their husband’s house and we lose track of them.

So that’s, you know, even if you want to have early intervention, it’s very difficult because the numbers change, everything changes.

The challenges faced by parents are more of lack of awareness.

Now, take example of rubella.

If every marriageable age girl is given rubella vaccination, that is when they reach their teenage, before they get married, they take just one shot of rubella, they are vaccinated against rubella.

They will not be infected, there is no chance of having a child with rubella infection.

But all this is the awareness which is not there, slowly it is increasing.

Second biggest problem parents face is, where to go.

So that puts parents at a back foot because they don’t know where to go.

They go to places, now there are so many, you know, what you call thaila-chap (unreliable) organizations and people who are working doing private practices, they label the child as intellectually impaired or something else or something else and they put the child there.

A deafblind child is cognitively very smart, it’s just that those avenues, two avenues of learning are impaired, of vision and hearing.

If we can compensate that in any way, that will be end of the child’s, you know, lack of awareness and lack of information around the, around him or her.

So that’s where parents, mostly it is lack of awareness that where to go, whom to go, whom to talk to.

Could you provide examples of successful individuals from across the country who are deafblind?

I started learning about deafblindness from two people, three people actually.

In Helen Keller Institute, Beroz has been my guru, there was Zamir, Pradeep and Annie Matthew.

These three, I would always call them Trimurti and they were badmash of the first order, they still are, but they were the first teachers I got.

All three of them have made a big time.

Zamir is running his own NGO, Pradeep is a great advocate now for deafblind, rights of deafblind people, Annie is working for a school in Ludhiana, in Punjab, School for the Blind and Deafblind.

So they have gone to, you know, everywhere.

Then we have younger generation, we have our own Shruti, who is here, Shrutilata Singh.

She is the first qualified physiotherapist, deafblind physiotherapist.

She has worked as, uh, with small children and now she is the lead of advocacy for us.

She is a changed person because she has got a cochlear implant now, so all those barriers she used to have with communication, she got the way out of it and now she is a big supporter of cochlear implant.

Life has changed for her and it’s good, I am, we are very happy for her.

Then there are many who are in different sectors, in the southern region, north-eastern region.

There are many who are like, Govinda, who comes from a very poor family in Assam, very remote village, even if, to go to his house, we need a boat ride, at any season, not only in rainy season.

And he makes ropes and the product made of rope, excellent guy, he is, he is someone who is full of life.

Uh, there is Prabhakar in Trichy, who is running a canteen in, in Trichy.

There are many like these, you know, who have done brilliantly, in spite of whatever barriers they had, and thanks to their teachers, because they have helped them reach to a destination which otherwise would have not been possible for them.

And thankfully there are not too many totally deaf and totally blind, all of them have hope.

There, there is hope for totally deaf and totally blind, as well as people who have some workable vision or hearing, because of our technology, the way technology is developing, which is a big boon for all deafblind, not only deafblind, I would say for all people with disabilities.

Could you tell us about the technology available for people with deafblindness?

For day-to-day life, any technology which is being used by a deaf person or a blind person is useful for deafblind people, depending on the, you know the kind of disability they have, kind of deafness or blindness they have.

Specifically for deafblind, for communication, there are 2-3 things, one is the Refreshable Braille display, which comes in different forms, different models and they have different prices, different costs.

But most expensive one is something called Pac-Mate, which is, which can be attached to your computer, your laptop and whatever is on the screen comes on a braille, refreshable braille mode through JAWS.

Then there is a smaller version of it, which is like, you can attach it with your smartphone also and you can carry it as portable and it has refreshable braille.

There are note takers also, which the person can switch it on, it will record the text and it will convert it into braille.

So all these are available, which a deafblind person can use, because it is to do with vision, so most of it is through braille.

There are deaf people who have some good vision, they use lot of, what they call, captions.

So all these Zoom and everything now are with captions, that helps.

How does the sign language used by a deaf person differ from that used by a deafblind person?

Very important question and at the moment, controversial as well, because, see deafblind people use one hand communication and it’s, normally it is the American Sign Language, which is done with one hand.

So deafblind person can receive with one hand, the other hand is free to talk to someone or convey what is going on.

The other one is the ISL.

Now ISL is two hand sign language.

ISL is based on the Indian languages, so in the longer run, we would want and we would like our deafblind people to move toward ISL, but to begin with, I think ASL is better because it gives them confidence that they can, you know, use sign language.

Every region has a different sign language, different signs, I would not say language, but different signs and sort of gestures.

ISL captures it really very well.

The dictionary has more than, I think, 5000 plus words now, it’s working out well.

We have also in…included our words which deafblind people use but they are not…about 450 or something which we have given.

So hopefully, soon it will be, you know, one language probably, in the country, it is difficult.

What initiatives or training programs are being implemented to support and empower individuals with deafblindness?

So once the child comes to our contact, the first thing we try and do is start intervention as early as possible, because the earlier we start, less expensive it would be and it will be easier for the child and the family to adapt.

So that’s the first thing we train mothers, parents, siblings, how to work with the child, how to, you know, rear the child and then straight away we go to education.

Because we have Samagra Shiksha or Sarva Shiksha Abhiyan, we want the child to go to school.

There are many children, because of their total deafness and total blindness or additional disabilities, they can’t go to school straight, straight away, so we do a lot of home-based training for them, preparing…remember, this is home-based, not home-bound.

What we do is we prepare them to go to school.

What all is required, whether they require a wheelchair or some other support for the family to take the child to the school, all that we do and also work with the school.

So we have got a module on curriculum adaptation which is for the regular teachers, not resource teachers because resource teachers are equipped to to educate children with disabilities and deafblindness.

But for school teachers, we have a module on curriculum adaptation.

We do targeted training of those schools where the deafblind child is going to be.

From there, we move on to vocation, pre-vocational training and vocational training, because in our world, not just the country, our world, money is which is very important.

It brings us status, it brings us decision-making power and all those kind of things.

So we don’t want deafblind young adults to be lost in that.

So we do a vocational training program and the training is done basically in rural India for wherever the family is involved, whatever occupation, and the deafblind young adult is also trained in that because it is easier to rehabilitate and train.

If there is no family occupation, then we try and identify something which a deafblind person can do locally with local raw material and support system.

Three years back, we started giving bursary, seed capital, to deafblind adults who have gone through the vocational training to set up their own work.

So we give around 25-30 thousand, un, non-returnable, we don’t want that to be refunded to us.

And they are setting up their own, so somebody has set up a poultry unit, somebody has set up a eatery, somebody has set up an animal rearing unit, various things, somebody has set up a automobile shop, because that area or that particular family is involved in motorcycle repair and things like that, somebody has identified ironing as the best occupation for them.

So, there are various thing that deafblind people have used.

What we do tell them that whatever profit they make, they need to put it back into their capital and increase their business, no need to return and we monitor it.

So that’s…and all is done through a partner organization.

We don’t do it centrally from here, we do it through partner organization.

And the, you know, leadership, the International Day for the Persons with Disability, the theme was creating leadership, we started doing it four years ago.

We have got apprenticeship or scholarship program where we are supporting deafblind young adults to go to NGOs and expose them into how do NGOs function, what is financial management, how the decisions are made, how they do strategic planning, all that, you know, organizational development.

So we are, we are supporting them to get exposed to that because unless and until they become self-advocate, the sector will not grow, so that’s another thing.

And the other bigger criteria what we are trying to do is working with the government and influencing their policies, whether it is health, accessibility, all those areas we want deafblind young adults, children to be included in that.

One big area we want to start our work is with elderly because that one segment is still we have not been able to reach out to.

We want to work with organizations who are working with people with, who are elderly and due to senile degeneration when they end up having a disability, we would like to work with them on particularly deafness and blindness.

How do individuals with deafblindness manage feelings of boredom, or loneliness caused by communication barriers and what impact does this have on their mental health?

COVID brought us many problems and bad things, but it brought one very good thing, an enlightenment amongst us that people with deafblindness also have mental health issues. Prior to that, we thought whatever they are showing there is a tantrum, you know, they are throwing a tantrum, it’s a problem behavior.

But during COVID, everything, all centers were shut down, no services were available, deafblind people were in their homes and family members were not that good in communication with them and they started feeling, the deafblind people started feeling very lonely.

Every morning they used to go to a center, there is a friend, a peer, a teacher who knows how to communicate with them, that was suddenly missing.

So after the COVID was over, we thought that let’s look at the mental health and we are very grateful to Grand Challenge Canada that they gave us, first time funding to any disability organization, to look at the needs of deafblind young adults and parents, what happens to them and their mental health.

We interviewed almost 1000 deafblind young adults and you will be surprised to know most of them were okay, but people who had issues were at the moderate level, moderate to little higher than moderate, they all needed counseling, some of them needed some psychiatric intervention, but the activities we did like, you know, breathing exercises, also activity of My Map, My World, where they know whom to talk to, because mostly it is loneliness, so these things helped.

Now we are on the second stage of that, where we are going to cover a larger sort of age group.

We covered, where is, I think it was from 13, 13 to 20…21 or 22, but deafblindness is, you know, huge.

So, we want to cover the larger age group as well.

This particular exercise with mental health gave us the importance the networks have, the networks of parents, networks of adult deafblind, and also the networks of educators, because educators are also very lonely, if they can’t talk to each other, they are very lonely community otherwise.

So we have three networks, we started almost 20 years back, but the importance of it became even more evident after COVID.

Now we are thinking of starting a sibling network.

And these are our feeding grounds.

These are the people who tell us what they require, and then the team we have, and our mentors and partner organizations, we sit together to plan an intervention in that area.

So it’s very, very important to have those, that connect with the networks.