1. Could you please explain how Ekansh Trust started?

We began in Pune but now uh we’ve spread out to the entire country and we’ve been working across the country. Um we talk about accessibility and the need for it.

We talk about Universal Design, whether it is built spaces or clothing or parks, everything that you and I take for granted has to be accessible to everybody uh in society. So, we’re talking about Universal Design.

We began actually in 2007 um with uh a sign language workshop meant for everybody, people who can and cannot hear.

Um the idea was that sign language is not very popular, wasn’t very popular in India and most people, there was a stigma attached to deafness as well as sign language.

And um growing up, uh I grew up in a place called King Circle in Bombay, where I would go to the park and I would see this group of South Indian men signing animatedly to each other and I believe I would stand there with my mouth wide open, is what my grandfather tells me, watching them sign.

So I can still remember that picture very very clearly.

It’s it’s sort of etched in my memory and um so when I came to Pune, I thought the first thing that I should actually do is look at making sign language more accessible, if I can uh put it that way.

So that everybody can learn how to sign. I didn’t realize the challenges that came with that whole idea.

So the first thing I conducted was a workshop, where I called experts from Bombay, from Ali Yavar Jung, and teachers of sign language and an interpreter.

And we had this huge group of about 40-50 people in a small room, sitting there and watching them sign and understanding what sign language is about, understanding what Deaf Culture, like they call it, is about etc. and that’s how the whole thing started.

What are your thoughts on the development of Indian Sign Language?

Even today I believe that sign language needs to be recognized, to be strengthened, I think they need a huge vocabulary so that it gives them access again, to education, employment and everything that you and I get in terms of information and education; and everything else is denied to them because they don’t have that kind of vocabulary where they can communicate these things with each other.

It’s like how you and I are speaking in English now, though it may not be our mother tongues, we’re not trying to appropriate English as a language, we’re not trying to pretend to be, um, British but we’re still speaking in a language that so many people across the world understand.

So, it just gives us access to so many more people and minds.

For them to have that with sign language, I think the language needs to grow in vocabulary, in scope uh and in access, so that more people can learn.

If there’s a baby, a deaf baby born in a house of hearing people, where will the parents go to learn sign language?

And how much of it can they learn so that they can communicate effectively with the child?

Teaching the child ethics, morals, manners, all of that is taken for granted in our houses.

And even the endearments and sweet nothings that we whisper to our children, how are the parents going to learn that if they don’t have access to a language, which the child will understand?

So, I think sign language definitely needs to grow and I think that’s still a long journey but uh thanks to the government of India, I think we’re working towards it now.

There is this organization called ISLRTC that has been set up by the government of India and they’ve been funded pretty well.

But what I feel is that, there is this innate fear among people from the deaf community, they think that we’re trying to appropriate their language.

So whether it’s Urdu where you’re so very particular about the pronunciations or sign language where every gesture, every expression matters, I feel that there has to be, um, some kind of a place where you can go and learn.

You know, I want to learn to speak, to use sign language, where do I go?

There are no classes in Bangalore, there are no classes…What is available is that um little bit that you get, that a second or a first standard student would speak.

There is no extensive vocabulary in sign language and what we are getting now is an English language dictionary, not a Sign language dictionary.

I know that is how they’re doing it around the world but if you keep doing this, you’re only translating, you’re explaining English words.

You’re not adding to the vocabulary in sign language, which is what we need to do. If you want to teach science, if you want to teach physics, chemistry.

When you say science, it is signed like this.

This is not physics.

This is definitely not botany or zoology.

This is chemistry, at best, right?

So how are you going to teach those different subjects if you don’t have the sign vocabulary for it?

Could you tell us about your initiatives to promote accessibility in India

In 2009, not much awareness about accessibility, there were many people actually working in uh accessibility, but they were all like, few and far between, if I can say, those efforts.

And bringing them all together, um, conducted a workshop…we conducted a uh competition for students of architecture where we said, ‘give us designs, you know, how, how much do you understand about accessibility in the designs that you are creating of built spaces?’ and that ended in a 2-day finale where we called people who were already working in the space of accessibility.

So, those efforts were not complete.

In the sense, I feel that every architect, every civil engineer, every contractor must understand, so that when you have tactile paving on the roads, it is a continuous thing.

It’s not something that happens for 1 km because some, one person has been given the project and then after that there is nothing, which is what we see nowadays.

So, um, there is a Sugamya Bharat Abhiyan that the government of India began in 2016 and I got Ekansh Trust, which is my NGO, empanelled as access auditor and again they went through the whole exercise now and I’ve got ourselves re-empanelled with the government of India.

So, when you talk about efforts, I am reaching out to students mainly.

I have always believed that the youth, they need to be sensitized, children need to be sensitized, so that the next generation doesn’t need another Trinayani or Ekansh Trust, you know, we should become obsolete, that should be our aim.

So I feel that the next generation must understand Universal Design.

Anything that you design, whether it’s a product, like when you look at an iPhone for example, there are accessibility features in this, which is wonderful.

We didn’t have this earlier, right?

Similarly, with clothing, why don’t we have these options?

Why don’t we have…there are so many students of civil engineering and architecture who don’t understand accessibility at all.

And they can get away with it.

They can actually score brilliant marks without even knowing this.

And this is an optional subject in many places, it’s an elective.

Why is it an elective, how can you get away with not catering to 15% of your population which might have some disability?

So I think um that is where we come in and I have been trying to talk about accessibility in built spaces, adaptive clothing to students who are uh who have taken up these courses in, you know, fashion design, or in architecture or in civil engineering, that is where I stand right now.

Also, I’m an access auditor with my NGO and I conduct access audits of built spaces as a part of Ekansh Trust and as an individual consultant as well.

What is an access audit, and what are the steps involved in conducting it?

An access audit basically is like your uh accounts audit that is done at the end of the year to see if all your papers are in order.

Similarly an access audit is done to see if all your accessibility features are in order in a built space.

So, you begin at the gate, you walk in and you check to see whether um the approach to the building is accessible for a person who’s on a wheelchair or a person who’s visually challenged or a person who’s deaf.

How difficult it…is it for a person to access that building from the gate.

And once you reach the building, then you start looking at the entrance at the door, whether the wheelchair is able to get in easily.

Is there a ramp?

The ramp of course is the tip of the accessibility iceberg, there’s so much more that you need to talk about.

Is there a ramp for the person to access uh uh the building uh enter the building?

Are there steps also, for people who cannot use a ramp because of other issues that they may have with their joints etc.?

Are there handrails?

So you’re looking at every aspect of that building to check if people with different disabilities are able to access that space with the greatest comfort that can possibly be offered to them.

It’s an evolving space.

People are coming up with innovations and things like that, but at least the basics have to be provided, so that people can access public buildings.

So, if you look at it legally, if I were to stop you from entering a public space, create a barrier, put barricades there and say ‘you can’t enter because you’re a woman or because you’re a man or because you’re so many years old or what, for whatever reason or you belong to a certain faith or a race or whatever’, there would be a legal case against me.

But through design and through omission, somehow you’re putting up these barriers and people are not able to enter.

So I think this is a legal civil issue, more than anything else.

You should not be able to get away with it.

So even bureaucrats and government bodies need to be sensitized, they have to be aware because when you’re passing a particular design for a built space, you have to check if it has all the accessibility features or not, which is not happening.

How does Ekansh use the literary medium to raise awareness about disabilities?

Not just literature but also art, so we came out first with coloring pages where we had all the festivals of India and we made sure that every picture had a character with a disability.

So then when you’re coloring it, you know, when children are coloring those pictures, he will ask questions about, ‘why is this person on a wheelchair, why is this person wearing dark glasses and using a cane, what is this in the ear of this person, what is it, is it a hearing aid?’

Um, so we began with coloring books and then went on to story books where you also have to sensitize writers.

What are you writing about and why is a disability always shown in this very sympathetic light?

Why can’t it just be a person with a disability living his life happily?

There are children with disabilities and these conversations have to begin in childhood.

Um, what you see typically NGOs doing nowadays and what has become very popular is talking to corporate executives because let’s be honest, there is money there.

There is funding happening, they’re talking about skilling and placement.

But if you’ve never played and communicated as children, um, children with and without disabilities have never had conversations with each other, how are you going to have conversations in an office which is such a formal setup, if you have never played with someone with disability.

You’ve never colored a picture, you’ve…you’ve only seen Superman and Hanuman and um Spiderman and all of these superheroes, but you’ve never colored the picture of a person who’s on a wheelchair or who’s holding a cane.

You know, so, these conversations have never happened.

These are difficult conversations to have but they should happen.

I think now people are beginning to talk about all this and you see them in movies etc.

So there’s a huge change from the time I started to now, but there’s still so much that we have to do because it’s not become a normal conversation yet and it should.

Can you talk about the accessible parks you've developed?

Like I keep saying, we want to sensitize children as well, and make sure that children with and without disabilities actually communicate and interact in informal spaces, not necessarily in schools because then it becomes a competition.

Whether you’re, you know, if you’re looking at education or employment, it’s always a contest to see who wins, right, at an interview or whatever.

But in an informal space, like a park, if you have swings where a where children with disabilities can use a swing, play on the swing or on the roundabout or in just in the park, even if you don’t install equipment, if that park is level, so that, you know, people can come with their children with disabilities.

It’s so amazing because then parents can communicate with each other and talk about disabilities and other parents are watching.

I generally feel that the first few times will be difficult because you’re judged, you’re looked at differently etc but if you’re going there every day, after a while it becomes very uh matter of fact and I’m sure conversations will begin to happen, right, and people will step out.

I believe that people are innately nice, so after a few times of meeting somebody with a disability, you end up having a conversation with them which is very casual.

And that has to begin at childhood and not when you’re grown up because you’re so worried about being politically correct when you’re grown up and children have no filter.

And I love the conversations that I have seen at the two parks that we made accessible in Pune where we set up uh inclusive equipment, where there’s a swing on which a wheelchair can go, there’s a roundabout on which a wheelchair can go.

And there are so few play equipment manufacturers who are into this.

So we need to see more companies which say that if we are installing play equipment, we also have this to offer, right?

So one is the supply, two is the demand.

Whether it’s a municipal corporation that is setting up a or it is a sponsor’s or it is NGOs like uh yours and mine which are talking about accessibility and inclusion.

We should look at pushing for inclusive parks where children with and without disabilities will play together.

So, in our own spaces we have seen that children have come and they have ended up helping children on wheelchairs on to the swing, without having to be prompted or told at all.

So, they just naturally started having conversations.

In fact we had, in one of our workshops in one of the colleges, we had three people on wheelchairs.

One had spina bifida, one had brittle bones and one had polio.

And the three of them were having a conversation about why they were in wheelchairs and they had never had this conversation before.

So, they don’t even know, a person with one disability does not know anything about a person with another disability or the disability itself.

So, I think these conversations will happen in neutral places like parks and we really need to push for such spaces to become inclusive, right?

And um, like you asked, municipal corporations must also promote this because if we are talking about inclusion in the country, in Sugamya This would be a personal opinion, because um I really wouldn’t want to comment on what everybody else is doing.

I do want to comment, but I shouldn’t, to be politically correct.

But yes, Bharat, then most definitely parks are public places and we should begin there.

What changes do you believe should occur in the disability sector that aren't happening yet?

I think everything has become very commercial.

Because wonderful that companies have been pushed into having a CSR department where they actually contribute funds.

But when there is money there is also corruption, right?

There’s money, there’s power and then there is corruption.

So I think when we talk about due diligence or when we talk about actually um funding an NGO, due diligence should not be about three years IT report, income tax reports and you know, ‘have you filed your papers and what work have you done last year?’, all of that can be fudged.

I think they really need to talk to the beneficiaries and figure out how have you actually helped and actually look at the projects that they’ve carried out and check to see if there’s any merit in it.

Not what somebody else tells you but actually use your mind.

So, people who are CSR executives must also have some kind of an education or some kind of a background and experience in disability work, if we’re talking about our space.

So that they understand what they’re funding.

I find that that is not there.

It’s all paperwork, it’s all about paperwork.

So this way you have one…so they give you funds for about three years, this year there’s one CSR executive and then that person is quit, next year there’s somebody else to whom you have to explain everything all over again, um and they don’t understand disability also.

So, bureaucrats, CSR experts, I think everybody that contributes to making the world a more inclusive space in some way, through funds or through licenses or through anything else, validation, should actually educate themselves, before they enter the space, so that the money doesn’t go into perpetuating this, the problem.

You have to be finding solutions and money should be put into that.

So there are individuals who are doing fantastic work, there are NGOs doing fantastic work and then there are these huge organizations which are run like companies with profit, without profit etc.

So I think individuals also need to be funded and CSR should look at this very very seriously to see the merit in what people are doing.

Spend some time probably and it shouldn’t be end of the year, ‘Oh we have so much money to give and who do I give it to?’, it should…you have to follow a person for some time, at least on social media, if nothing else.

Speak to the beneficiaries and see the kind of work that they’re doing.

That’s one, and advocacy especially is so very important because there’s so much lack of awareness.

If you…the, the crux of this entire problem, if you see, is whether again, whether it’s a CSR executive or it is a bureaucrat, there is no awareness.

So without advocacy we’re never going to have awareness.

Lot of due diligence has to be done and I think, yeah, most definitely advocacy also deserves a big chunk of the CSR funding that’s available.

In advocating for disabilities, what more can be done to raise awareness effectively?

So I think as a part of advocacy we also have to talk about so many different conditions that lead to disabilities.

Some of them have been listed in the 21 but so many of them have been left out.

So, like if you’re talking about acid attack survivors, we should also talk about fire survivors.

If you’re talking about uh thalassemia and sickle cell and hemophilia, why are we not talking about diabetes at all?

Diabetes is the most common uh condition which causes so many disabilities like nerve damage especially, cataract etc.

But it’s not listed.

There’s also Psoriasis which is listed as a disability abroad but not in India.

Asthma, which I have.

There are so many conditions leading to disabilities but just a few have been listed and that is unfair and I…I really think that we should look at disabilities per se and not confuse disabilities with conditions leading to disabilities.

It should not matter what is causing the disability.

I think in this space, we should focus on the disability itself.