Namita Jacob on Deafblindness

Let me start by what deafblindness is, in the first place, um, because reality is, that itself is complicated.

It’s clearly a person who has a loss of hearing, a loss of vision.

But that loss of hearing can be to any degree and can happen at any age.

The loss of vision can be to any degree and can happen at any age.

And both these factors are key.

Vision and hearing are such essential senses.

An infant learns about the world by seeing and responding, hearing and responding.

 

So let’s take the the perhaps the cleanest case, you are born without vision, without hearing.

And think of that infant, and how that infant is going to learn about the world.

What is left? Uh, what is left is actually a pretty powerful sense: the sense of touch.

Now, we underestimate, touch is actually a fabulous sense.

And in fact, uh a sense that helps a baby make sense of what he’s seeing,

uh, what he’s hearing but definitely what he’s seeing.

But if the child doesn’t see, then he doesn’t know to reach; he doesn’t know to take;

he doesn’t know that he has to use this powerful sense in order to understand the world.

So it’s hit and miss, right, and it really lies with the adults, the parents, the others around the child to recognize and respond.

This is fantastic.

When it happens you can build in communication as well as learning, all at once, right?

Uh, child—children recognize their moms by how they smell, not just by how they look or how they sound, right.

Newborn babies have that strength.

So these senses can combine, can be encouraged to combine through positive experiences.

But in order to do that, we need to let go of all the ways that we know how to interact—you know, uh, with the world.

What do I mean by this?

When we—when an adult picks up a child, uh, it it shows in our face, it shows in our body, it shows in our voice,

and children are pulled toward that and they respond.

But, um, this child is going to actually respond to your hands, to your emotion,

and respond to that with his body, with his hands, with his feet, and not with his face.

So, a parent not getting a visual response, may put the child down and move on,

and thus could begin a journey of starvation, right.

 

When we interact with children who are deafblind, adults who are deafblind,

we need to, to see the potential of this wonderful sense of touch, and um be intelligent in how we use it.

So, if you have a little vision, if you have a little hearing;

if you lose your vision later, if you lose your hearing later,

you have that much more support, that much longer.

But don’t be fooled, um, vision develops as you grow up,

and it develops in, um, in response to what it’s uh experiencing, what the person is experiencing.

So, when you have really low vision, when you have, um, numerous limitations,

your experience of the world becomes that much less, unless it’s adequately facilitated.

 

 

Uh, touch has one—well, it has many challenges.

But one of the big, big um challenge is, is that it’s both the sense I have to use, I have to use in order to communicate with you, right?

But it’s also the sense you have to use in order to understand the world.

So, that wonderful, uh, in you know, age where you can point at the bird,

and you and the baby and everyone’s looking at the bird—that whole thing happens so effortlessly, it’s so hard, right?

So, now, what I have to do is I have to take your hand; I have to touch something.

Uh, you have to feel that my hand is touching something or doing something.

Then I say to you, ‘that’s, uh, whatever it is.’

You have to listen, grasp that without having as yet touched it, then go back with me and touch it,

then come back with me and sign it, and then go back and come back.

And in this way, you start to piece together your understanding of the world.

So, being patient, taking time, giving time for that processing, those connections to be made.  Uh, these things become essential.

 

Being deafblind, um, early in life is not as um a big barrier as not being connected with an environment, with an adult group that does understand you.

When I think back on my old students and now colleagues and friends,

um, I have someone who works in a company, I have several who work in various government jobs, uh, post offices, banks, etc.

Uh, many are married, many have kids, many run businesses, uh, and many are struggling, many are struggling.

Many have great capacity but are surrounded by people who don’t see it.

Many have um, lot of challenges in learning, in performing, but are surrounded by a very enabling environment.

 

Um, my old students, uh, came together to start their own society, SEDB, The Society for the Empowerment of the Deafblind.

It’s the first organization of its kind, of the deafblind, for the deafblind.

It’s pretty marvellous.

Uh, and watching what they’ve done.

They’ve formed a WhatsApp group, into which they invite, uh, deafblind people from all over this wild and crazy country of ours.

People who are deafblind, um, and people who support people who are deafblind,

be it family members or be it, um, interpreters, deaf friends, whatever.

Especially because of the pandemic they, they used it as a way to check on each other, to support each other, to inform each other.

Because you know well how accessible pandemic-related information was.

So, they used it as a way to, to keep each ot—keep tabs on each other, make sure everyone’s alright.

Raised a lot of support for those who needed it, and there were many.

They have over 100, 150 members.

Uh, it’s wonderful to watch how they support each other, how they communicate with each other.

And it blows my mind that this group of, um, people who have profound communication challenges are so noisy.

That group never stops; it never stops.

There, there’s someone saying something all the time.

And they have evolved their own, uh, rules of what is okay to post, what is not.

How, um, you know, to make it accessible to somebody else.

Someone who may need sign, someone who may need sign slowed down—um, technology is been marvellous for them.

This in particular, having access to, um, to internet, uh, to WhatsApp and, uh, to find a way to educate each other.

 

Every year, SEDB organizes a conference of adults who are deafblind and sends out the invite through the deaf network to find anybody who is deafblind and bring them in.

How much marvellous is that?

So, every year we have new participants who join us.

And over 95% of them are adults who are deaf, who are losing their vision.

We do have a few, who are visually impaired through life and are losing hearing.

But the vast majority of people who join us are deaf adults, who are losing vision in adulthood or who have lost vision.

 

In this group, those who have gone, you know, in school, developed good literacy, are using writing as a way—writing on the palm as a way of interacting.

Many are married, have kids, have jobs.

Um, for those who didn’t have great literacy and those who are—who went through oral education, don’t have sign language, this is a giddy nightmare.

What is marvellous is how this group is able to support them.

Uh, often the family member comes to a professional, ma’am can you help.

But the best support, the best counselling I’ve always seen, is by these guys, you know.

The way they can motivate each other, support each other, is marvellous.

 

We run a library, uh, of adapted storybooks because we see literacy as the one big thing across disability that so many people lose out on.

And without literacy in today’s world, access to technology becomes hugely limited—a lot of technology, right.

Um, so we run this Accessible Reading Materials, The ARM Library, and it’s targeting the youngest children.

But it’s also targeting kids who may have an accident, have, you know, uh, need to develop new ways of learning to read, even if they did read some way before.

 

We already have created books that are meant for people who are coming to a new form of literacy, later in life.

So, it assumes that you have, um, you are your age, you know, you don’t want to be reading A for Apple, B for Ball, right.

So, um, I have put together these really simple collection.

Six, you learn six alphabets, I’ll give you a book.

You learn 12 alphabets, I’ll give you a book, you know.

And these silly books, they’re funny books and you get a—you get a kick out of it.

 

I’ll never forget the first time Sunil laboured through his first book, and he was mind-blown that he could do it.

Giving this kind of access to adults, giving them respect, giving them joy.

He gets, um, such fun out of reading these little books, uh, it’s lovely to see.

It’s, it’s really how you need to enter literacy at any age, right.

 

The other big barrier that I want to talk about is, uh, interpreter services.

There is an assumption that if you, if you are deafblind, how do you sign or how do you receive sign or sign.

And the way you do it is simply like sign language, except that I have taken, you know, we have each other’s hands in our hands.

So, if you sign, um, it takes you very little time to get used to this idea, and it kind of flows quite naturally.

So, in many ways, uh, people who are deaf serve as marvellous supports to people who are deafblind, uh, in interpreting the world for them.

A trained interpreter is often a barrier because they are trained to do a specific job.

And their job is to take speech and convert it into sign, take sign and convert it into speech.

But if you can’t see, you’re missing more than what you hear.

So, who’s going to help them figure that part out?

 

Um, what SEDB would like to do and what I’d like to see happen is a proper uh training course for interpreters to be certified in being interpreters for the deafblind.

And what I’d really love to see is for this to be offered to the deaf population.

I sign, I—I have an adequate vocabulary in ISL.

I’d love to give you the skill.

I’d love to give you the skill because they do get it.

And in addition, it means that many—the deaf community are at risk, of course, at being deafblind.

Just age can make you deafblind.

So to already have these skills inside you, to have this familiarity inside you, would be marvellous.

 

People who are deafblind use tactile sign language, right.

So, they use sign language but uh, it has to be uh hand against hand.

It includes components of sign which can be anywhere against your body to capture the visual elements as well.

 

There is a convenience in uh using a single hand signing system.

And that is that, I can listen and talk, and then I can listen and talk.

So, this back and forth smoothness of conversation uh happens easily if you use a singlehanded way of signing.

 

Sign language will very naturally slide between two-handed.

There’s a proper sign and there’s a shortcut, just as we slang our words, right.

Uh, there’s, it’s not different.

So, if I’m eating a sandwich and I sign with one hand, I’ll sign with one hand.

Whether I’m using ASL or ISL doesn’t matter, right.

It’s about the fluency and comfort with the language.

But tactile sign language is not just sign language made in your hand, there are numerous elements to it and there are numerous rules.

Um, you know, ways by which you can send information to your partner, to your, who your conversation partner, about so many other things, right.

Um, where you are, what’s going on, um, why something  hhasappened, you know.

Why is it suddenly so hot? What has changed? Hey, the lights went off.

Stuff that you know automatically needs to be passed on.

So, your, your partner is a part of what’s truly happening around them, right.

So, you need, as an interpreter, to learn how to do these things without being overwhelming, right.

You need to figure out when to give information, how to give information, how much is too much, how do you figure these things out.

Uh, you also need to really get comfortable with your partner’s um language, their language history, their experience history, so that you can pick words.

Um, I remember, being just uh stepping in, I’m not an interpreter.

But um, you know, just stepping in to support uh my deafblind friends.

And the deaf interpreter came to me later and said you shortcut everything.

And um, and I said I don’t shortcut, I simplify, because I know who I’m signing to.

If I were to just take your sign and mirror it, I’ll lose him.

So, I need, I know him well enough to know how to take the key elements and make that available to him.

That is actually not what we teach our interpreters to do.

Their job is to simply take, we don’t interpret the conversation, we just reflect it, right.

So, these uh elements, I think, are essential and um it would be wonderful if we can—

I think it would make a world of difference to our deafblind colleagues if we can provide this additional support.

 

Um, typically, if you are identified at birth as having vision and/or hearing impairment.

Um, certainly you know uh, spectacle correction, etc., will be offered for visual impairment—magnifiers, vagairah.

Uh, for the deaf, hearing aids today a lot, um, cochlear implants.

Once you’re in school um Braille, assuming you’re blind, Braille.

And, uh, any technology access will require a refreshable braille display.

A refreshable braille display is, you know, for the visually impaired, whatever is on the screen has an audio readout and they can use an ordinary keyboard.

The deafblind can use an ordinary keyboard but they can’t hear the screen, they can’t see the screen.

So, they get Braille that comes out on a little, like a foot ruler, that just reads line by line, word by word, letter by letter—whatever you choose.

They can type.

So, they can flip between the modes.

This same device in a shorter form is something that they—a smaller version is something that they can carry with them and Bluetooth connect to their phone.

So, this gives them you know access on the go.

However, we always teach um multiple modes of communication.

So, Pradeep, for example, till today will make a little communication card for quick access.

For example uh, if he’s booking an auto, you know.

There are two or three places, he wants to go to church, he wants to go to work, he wants to get back home, etc.

So he will say, he will ask me to write and then he will Braille on a transparent sheet of paper and stick it on top of it.

So, he’s able to figure out which message says what.

It’ll include things like uh, something at the canteen, at the office canteen.

Um, some typical problem he runs into in terms of maybe um, with his computer at work

Uh, you know.

Um, maybe stuff he wants to buy in a shop.

So, he makes himself a little book that he updates every so often.

Um, we also teach writing on the palm, we also have pre-printed cards in multiple languages, uh, and so on.

So there’s any number of things that they may use.

But in school, having access to low vision devices, uh, computers, uh, refreshable braille display.

These things are going to be essential, in order for them to truly access the curriculum.

In addition to this, having access to real uh models.

Uh, you know to, to be able to have things that they can explore and do.

So that, they can comprehend what would otherwise just be text to learn by heart.

These are things that are essential.

Um, overall in life, cane.

Uh, we did a survey during the pandemic.

And uh, the cane and the phone were the two big winners in terms of what they rely on even in adulthood and across all areas of life.

And that’s something that should make us all pause, because phones are not typically taught at school age.

And they really should, because that’s what they use through most of their life, you know.

Um, we do have smart canes, we do have uh radar and all these other things.

But by and large I’ve seen um, a strong preference to using an ordinary cane.

Um, they enjoy the other stuff but it.

But uh, I think they rely quite heavily on something that isn’t perhaps an additional um use of tactile, you know.

Uh, that heavy vibration response, after a while, I think, they need a break.