Rajesh Aggarwal, Secretary, DEPwD on Disability Rights and Progress in India

Could you share your experience in the disability sector and how your approach to empowering persons with disabilities has evolved over time?
Though I had more than 30 years of service before I joined this department, in field in Maharashtra, in other ministries, in Government of India, and we do come across people with disabilities during our daily life and in our official work, but after joining here one realizes that the situation is actually very different from what we perceive.

One, unfortunately, even today, due to multiple factors, we don’t see many persons with disabilities in our schools, colleges, shopping malls, offices, bazaars.

There are infrastructure issues, there are some stigma still related to disabilities in the country and on that count, on the mobility, actually we see the situation in the West is very different.

So, when I was a child in school, I had one friend or one other colleague, student, who had polio.

So, I had, as a student, I did not have any interaction with a visually impaired or hearing impaired child.

On that count, now the situation is improving.

So, the new generation of children who are studying in our schools and now every school is supposed to be inclusive and many are actually inclusive.

So, they will have a different experience on this, but our generation of people, more than 40 or more than 50 years old, unless we were actually working in this sector, we were not really exposed to this field.

So, that is what first hit me that this sector was actually very new to me.

So, maybe due to that, so I actually started reaching out to the whole Divyang community and lot of reputed NGOs, other practitioners, lot of parent groups, lot of achievers in this and that has shaped my views in last two years and I have deliberately reached out to lot of achievers in the community, unless we really promote role models, the parents as well as the younger kids who have disabilities, their aspirations will be limited.

So, I believe that, that has been the most significant achievement that we have been able to involve, reach out to the community, involve them, involve the influencers and the achievers in this, reach out to lot of parent groups and one mantra I have tried to follow really is that ‘nothing about us without us’.

So, in all various other meetings also where we actually did not have persons with disabilities earlier, we do call them as special invitees to ensure that whatever decisions we are taking, we really, they really benefit the people.

Sometimes as a bureaucrat or as a government, what we feel may not be really what Divyang community’s priorities are.

So, we have tried to match our list of things with the priorities set by the Divyang community overall, but again the community is very big, now we have 21 disabilities, we try to reach out to everyone.

COVID changed the way the whole society functions, not only the government.

So, the government, now almost entire government of India is paperless, we use e-office and we use VCs, all the ministries, not only us, we use VCs, video conferences, day in and day out for our own internal meetings as well as reaching out to people and, and also it’s important because otherwise physically only Delhi based activists will keep meeting us.

So, we don’t want our ministry to be only Delhi oriented, it has to take care of the entire country.

So, what VCs and what COVID did was that it made the virtual platforms a norm rather than the exception and that’s true with our ministry also.

Among the 21 recognized disabilities you’ve engaged with, which do you believe require significantly more attention and support?

See, if I actually name one, the others will say you are being partial, but frankly, personally, I have felt that the deaf community, we obviously now use the word SHI, Speech and Hearing Impaired, but that then combines lot of various sub-disabilities.

So, the children who can’t hear 100 percent, I think those kids are very, very disadvantaged because I believe that communication is what really makes us human and the connection first between the child and the parents.

If they can’t communicate well, I think the children who are born deaf and frankly in 95 percent cases, the parents are hearing parents and actually deafness also sometimes people don’t realize, parents also realize after many months or sometimes even after years that the child can’t hear and so the communication there is broken.

So, even if we see the education part, so, leave aside the cognitive impairment, this thing, amongst other disabilities, the deaf kids actually, very unfortunately, we don’t find deaf kids actually moving beyond 10th really, in many, many cases.

So, we are really focusing on obviously Indian Sign Language is one, involving parents is another and really focusing on education part of…

Now, in fact, what is happening is, if you go to any five-star hotel in the country, across the country and if you really talk to their management, they will have 5, 10, 20 even 30 people with hearing impairments because as you said it, they look absolutely fine and they fit into the whole hotel culture, but then they don’t really proceed beyond a point because their English or Hindi or Bengali skills are, reading and writing skills, they are poor.

So, we are now focusing on this with employers also, that how to impart better language training, reading and writing on computer, on mobiles, how to write even better emails.

Otherwise, once they are landing jobs, they are staying at only those points, they are not able to move to management cadres unless their skills, language skills are good.

In your two years as Secretary of the Ministry of Social Justice and Empowerment, which disability community has stood out as the most vibrant, with strong self-advocates and leaders?

See, two communities, because their numbers are high and they have managed to reach good positions, one obviously is locomotor, obviously they have mobility issues, wheelchair or other stuff, but many of them are actually extremely educated, they are in all good government positions or even in private sector at many high positions.

So, they are able to articulate their things very well.

So, that’s why if you see the whole ‘Sugamya Bharat’ also, the first focus has always been mobility, you know, buildings, roads, transport and second community which is again very vibrant is the visually impaired community.

Though 100% blind people and even low vision people, obviously, the vision issue is there, but otherwise they are extremely sharp and even in Supreme Court, you will find probably a dozen lawyers who are visually impaired.

So, in fact, most of the court cases if you see, on the advocacy part, they have come from visually impaired community because they have reached high positions in, they have done very well in law sector and and frankly the whole advent of mobiles and computers, that has made a huge difference in their lives and for example, on 3rd December, International Disability Day, Andhra Pradesh Samagra Shiksha Model has got the President’s Award and they got it primarily because right from class 1, they are teaching deaf kids and blind kids use of computers, right from class one.

So, these kids will become programmers, lawyers, whatever they want and in fact, now I am also pushing very hard for STEM courses for blind and deaf kids especially.

Even now, probably more than 90% schools including government and private schools, if a blind or a deaf kid, I am using these words for easy understanding, so rather than VI or HI, 90% schools still say, “sorry, you should transfer to Arts after 8th standard, don’t do math or science”.

Only 5 to 10% schools really encourage that.

We are really pushing hard on that, that if the kid wants, the kid should have a choice to go into science subjects.

Are there plans to update or expand the RPwD Act 2016 to address existing gaps?

The act was only passed in 2016 with a good consensus.

So, I think that will continue for next few years.

Many things we are able to cater to through the set of rules.

The rules are sort of dynamic.

For example, now Supreme Court also has passed a judgment and so our guidelines, we are now sort of dividing them into non-negotiable set and, on the accessibility part, various kind of accessibilities.

So, I believe the, at the moment, I don’t see any need of changing the act per se and many things we are able to do through rules, though there is always and there will be demands on adding more and more kind of disabilities, but our stand frankly till now has been that, for example, there is a demand to include diabetes.

So, and India is the diabetes capital of the world, but our stand has been that it has been a, it is primarily health issue, but only when it leads to certain disabilities – for example, very unfortunately, we have large number of diabetic foot amputations in the country – so, at that time, you get a disability certificate and you can get those benefits.

Only if you develop certain disability after any disease, because even in 2016, when the act was passed, there was quite a vibrant discussion in parliament.

How is the department working to enhance skill development and employability for persons with disabilities in various sectors?

See, one is classically government funded skill courses.

In education also, we are funding quite a number of special schools and state governments are actually funding much more than what we are doing as central government, because primarily that is a state subject.

In skills, just like Skill India Program, a counterpart here has been running and we found that that was primarily catering to locomotor.

So, now, we have reached out to large number of deaf schools and blind schools in the country and other disability related special schools also.

We have enabled them to even run the skill courses.

And also we have said that, okay, if our skill course says 3 months and you want to do it in 1 year, you can stagger it out over 1 year.

So, that is one, but now, we also have a free coaching scheme where we coach for getting into higher education or getting into government jobs.

But actual number of jobs are actually much more in private sector.

And then, we also want our Divyang kids also to go into entrepreneurship also.

So, so we have schemes like Divya Kala Mela and also where we are promoting entrepreneurship.

But then, we have tied up with more than 25 job aggregators.

Like Sarthak is doing good work in primarily for visual impairment, connecting them to employers.

Atypical Advantage, Vineet is connecting lot of employers, Enable India, Youth for Jobs.

So, many job aggregators are there in the market.

And then, bigger companies like Infosys, Amazon, etc., they have directly linked to our portal PM Daksh.

So, our effort has been that on PM Daksh at any point of time, there should be 15-20,000 jobs availability for youth with disabilities.

And through this job aggregation and directly companies coming on this platform, so that network has also started yielding results.

And also, if you have seen that again on this International Disability Day, Zomato also got a employer’s award, because 2 years back, they were the, frankly the first ones.

They worked with Neo Motion, an IIT Madras incubated startup, who have wheelchairs with a scooty type of attachment in front.

So, they started deploying them as delivery boys or girls.

Then other companies like Amazon, Swiggy, Flipkart, they also joined hands.

And after this award, Deepinder Goyal, the founder of Zomato, tweeted, he said, “we now have 1500 such youth, we will go very quickly to 5000”.

So, the jobs are coming in various ways.

Are there targeted campaigns to raise awareness in rural and underserved communities, and how are they being implemented?

We have our National Institutes, we have our CRCs at state levels, we have about 150 or National Trust funded NGOs working across the country.

We have about 400 plus projects of DDRS working across the country.

Then we actually mapped in last 3 years, where have we held camps.

And no surprises, most of the activities do happen in urban areas.

Though people in camps come from rural areas also, but the camps get held in urban areas or district headquarters.

So, we are now very proactively reaching out to unserved and underserved areas.

For example, 500 aspirational blocks, we have actually gone to almost 300 aspirational blocks, held assessment camps there, and these are obviously purely rural areas and remote areas.

And we will cover all 500 by June this year, with at least one assessment camp to fill the unmet demands.

And many awareness activities now we are trying to do in rural areas also.

Can you share some examples of initiatives you’ve led to support persons with disabilities?

In Virali Modi case in Mumbai, when she tweeted that ‘am I a piece of luggage?’, then after marriage she went to sub-registrar’s office and she had to go to the first floor wearing a Lehenga.

She had requested the sub-registrar to come down and do the process.

“There is no lift, how can I come up?”

He said, no, you have to come up.

So, then I passed an order that anywhere in the country, in any government office, if your office is inaccessible, you should go down and serve the Divyang.

And now in many parts of the country, Divyang people show that order to the officer concerned and they say, “okay, I will come down and do the needful”.

So, that has helped.

Then a few suo moto cases. For example, one suo moto case was, which is actually crazy, that we have a Sarva Shiksha Abhiyan Fund with state governments and we have a combo scheme, SSA-ADIP scheme, where school children are given assistive devices.

So, the school teacher and ALIMCO guys, even if the child does not have a disability certificate, under that scheme, they assess the requirement and give the item without insisting even on disability certificate.

So, what happened there is, we found out that State Education departments were taking the stand that the school which is under the State Education department, this scheme will be implemented only in that school.

The special schools which are run by social welfare, or some NGOs, that scheme was not applicable in that.

So, we said that this is wrong, that a school is a school, whoever it is run by, or whichever department is overseeing it.

So, then School Education Department of Government of India, they issued a circular immediately after one week of that hearing, telling the State Governments to utilize the money from SSA for a child with disability, wherever he is.

And already the implementation of that has started.

In many special schools, kids have actually started getting items.

What are the most common issues and complaints you receive, and how are they addressed?

See, one is obviously the grievance system.

There are multiple ways, there is the CPGRAM system of the government, then on our website, there are many forms for grievances, for different schemes.

Then, many cases go to the CCPD or go to the state commissioners.

And CCPD also, I think it has been almost one year, we opened online forum also.

They just have to fill up basically the grievance there and we initiate a case or we try to resolve it.

Then there is Sugamya app for reporting accessibility issues.

But then we are also proactively reaching out to community in a big way and we analyze the grievances using AI tools, 15,000 grievances related to UDID received in last 5-6 years.

And then summarizing that how we can sort of systematically…so, we then see the systematic issues, then try to resolve those policy or procedure issues, so that those kind of complaints reduce or become zero.

Could you clarify the confusion surrounding the UDID card and Aadhaar for our friends with disabilities?

So, Aadhaar is for everyone, including Divyang persons and Aadhaar right from 10-12 years, they had good embedded procedures, how to do exceptions.

If you can’t capture someone’s eyes, the eye exception is there, someone does not have fingers, for example, in leprosy and other cases, they had exceptions.

Even for oral cancer and all, they have facial exceptions.

So, so the complaints of Divyang people not having Aadhaar, they are now quite minimal.

And wherever those come, we also try to sort of intervene and resolve them.

Now, UDID started around 2019.

Again, actually the hospital’s authorization is done by the state governments, that which hospital can do what kind of disability certificates.

The only thing is people apply online, the doctors put their diagnosis online, then the disability certificate and the card, so, that gets generated and that is called UDID number.

So, earlier we were sending only cards that were above 40%, that, we used to send via speed post and other cards via normal post.

So, now we have started sending everything by speed post, since last year.

And we have also enabled a feature that if the card has not been received or is lost, so, it is now automated, where you just say you’ve lost it and you will get a new card.

And at times people said, that they also wanted the doctor’s diagnosis sheet, so, since 3-4 months, even for older cases now, you can download not only your card and disability certificate, you can download the whole diagnostic sheet of the doctors also. So, you can download 3 things.

And we are pushing these 2 things, the disability certificate and card into digilocker also.

So, so that you don’t lose the things basically.

And now, we have really shortened the form also, the online form, we have really shortened it, we are not asking for unnecessary statistical information.

So, we try to simplify things, make it more user friendly.

And so, we take complaints as individual complaints also, then we look at the real reason so that, then in future those kinds of complaints don’t come.

What are the department’s key priorities for the next 5 years in advancing disability awareness and inclusion?

Obviously, awareness, inclusion, attitudinal change that is obviously, that has to happen all across.

But otherwise, one is education, education, education.

I personally believe very strongly that all children, they need to be educated to their potential, not by our own attitudes, that this child cannot do anything, parents also need to change their attitude if they believe so, and so does the society.

And now, that’s why we are promoting role models in a big way.

Now, we see totally blind kids actually becoming coders in Microsoft, becoming Supreme Court lawyers or into vice presidents of banks or anything.

So, they are not at the, only back operations, they are in the front doing a lot of things.

We have professors, head of departments in Delhi University, Mumbai University, who are 100% blind.

Similarly, for Deaf community, as we talked earlier, they have slightly lagged behind in education.

Then, even now, for example, autism is rising very badly, autism, ADHD, and many of these kids if tackled well by parents and teachers right from beginning, they can do quite well in life.

Again, again, we say everyone is good at something and you showed me a poem which also says that.

So, whatever is the potential of the child, we must ensure that child goes there.

And then skilling and job, and entrepreneurship, that comes later, first is education, education, education.

And in that also, to the extent we must encourage inclusive education.

So, before independence also, we had actually 1000 plus schools, which were called deaf schools or blind schools or basically earlier the term ‘Mental Retardation’ was used, then we use ‘Intellectual Disability’ or other terms for that.

I personally believe that even in, students studying in those schools, after 2, 3, 4 years, many of them can actually go into inclusive schools.

And also lot of actual data across the globe also shows that children who are into inclusive schooling, they do much better later in life, in their personal life as well as in professional life, as they are exposed to the society as a whole.

And second is now, assistive technology can change lives – so, in that obviously, it starts from pre-natal stuff and post-natal stuff, early diagnostics, and then whenever they need gadgets or now help of any software supported systems also – so, assistive technologies are going to change lives.

So, our budget also now, one third of our budget actually goes into assistive technologies.

We keep on adding new elements to it.

We are focusing on “Made in India” but and frugal but very high quality stuff.

For example, again this 3rd December, we launched two products.

One is again IIT Madras incubated artificial knee joint called ‘Kadam’, and it’s about, we are machining it at less than $100 and it’s comparable to things costing $1000 otherwise.

And absolutely same quality, we are actually doing good quality stuff.

And for example, low vision kids very unfortunately, they get pushed to special schools, then they are also given Braille books to read and a white cane.

That is very unfortunate.

So, some of these kids will actually go blind progressively, but as long as they can, they have low vision, we should expose them to technologies which help them with low vision.

So, we reached out to CSIO Mohali, it’s a part of CSIR labs, and they are actually, they do glassworks in cockpit of many fighter planes globally.

They are that good in optics.

So, we reached out to them saying we need power glasses for kids with low vision, with 16 power, 20 power, 26, 28 power, low weight, robust – that even if the kids throw the glasses they don’t break – and they have actually, we launched these.

They are absolutely great quality.

So, the focus is on good quality stuff, preferably Indian stuff.

And we are working with a lot of AI based groups also.

For example, I reached out to OpenAI team and they said, “okay, we’ll work with you on non-standard speech to text”.

Now we can tell Alexa, “Alexa, play this song”, or “Siri, do this”, but if a cerebral palsy person is speaking, it’s a slurry voice, that command might not be understood.

So, we are working with almost everyone, who’s who of the tech world, on these kind of solutions.

So, education and assistive technologies, that will change lives.

And obviously, attitude change in society.

Could you share a few concluding thoughts on what we can collectively do to support persons with disabilities?

“Nothing about us without us.”

So, we are following that mantra and involving Divyang community in everything we do.

We are increasing our engagement with citizens, parent groups in a big way.

Our teams are fanning out to states, even for example, Purple Fest in Goa held twice, that brought a lot of community and experts together.

So, I believe the voice of the community, their grievances, aspirations, we are working quite collaboratively with them.

But again, this is a thing where societal attitude is, change is really needed.

Let us say, there’s a family living in an apartment complex in Delhi or Bangalore or wherever.

So, how are other neighbors, how are they reacting – if the family with their Divyang child is using the lift, are the rest of the people wrinkling their noses or making faces after seeing, or passing any comments? If the child goes down to the common park, do the other parents say anything, or take their child and walk away, or say, “Don’t bring him to the park”.

That unfortunately still happens in our society.

And so, these societal attitudes are slowly changing.
The stigma that existed before is now gradually decreasing.
Now, the younger parents also, I should not be really using these words, but they don’t hide their child in the house.
They say that they need to take their child outside – to the doctor, to school, to the playground, and go together to the shopping mall as well.
When all Divyang children, youth, step out into society, only then will attitudes change, only then will systems change, and only then will the transport system adapt on its own, the demand will naturally arise.
But we do unfortunately get sorry stories from Divyang community and parent groups, that our neighbors are not really behaving well with us or the system, system means the whole, whether it’s a school or anyone else or the shopkeeper, but now, attitudes have started changing.

So one, I would like to request everyone in society that Divyangta is a part of humanity, it’s a part of diversity in human beings and whatever age we are, if we live long enough we will encounter some temporary and some permanent disabilities in our lives, unless we conk off very early, then we might escape temporary and permanent disabilities.

So, every person, every family will have this.

That is the first thing to understand, take it as a part of diversity.

And if the whole, the only thing which is needed are two small things: one is equal opportunity and second we call reasonable accommodations.

For example, if you are a school teacher or a school principal, my request is that please give the child a chance, equal opportunity.

Then, reasonable accommodations, we don’t say very unreasonable accommodations, so 99% of the children will really benefit from it.

Hardly, even 0.1% children might be such that they need homeschooling, they can’t come to school or mix with other children and so on.

So, every child has a right to education with some reasonable accommodations, so they must have that.

And then, participating in everything, whether it is your local playground, please welcome all the children, everyone.

If it is a local swimming pool of society, or of municipality, the wheelchair should be able to go there, a blind, visually impaired child should also be able to swim and so on.

So, they have the right to entertainment and sports, everything in life.

And obviously, as they grow up, the right to marry, all those opportunities should be there, whatever other youth do, the same activities, all these kids should be able to do, and after getting education and skilling, they do need mentoring to some extent, so my request is, if you’re an entrepreneur or a businessman or you’re an association or whatever, so please do some mentoring, do some hand-holding, that will really go a long way.

And to all the employers I always say to take a leap of faith, employ one or two persons with disabilities, and I also very openly say that if they are not able to work, fire them.

Why do I say this?

Because I am sure and there’s lot of actually global data to back it up, if you give an opportunity to a person with disability, they are very loyal and productive employees, and the attrition rate will be one-third or one-fourth of attrition rate of your other employee, because once they go and they feel comfortable, they don;t really switch jobs.

So actually hard, absolutely hard-core data shows that Divyang employees actually make good productive employees, and a little bit of diversity in your office actually sensitizes everyone else.

It makes others also more human and, sort of better, more sensitized employees.

So, take a leap of faith and take two people and then i don’t have to talk to you, you automatically will scale that up, once you have, sort of that experience.

So that is what the Divyang community asked for, just equal opportunities, good dignified life, getting exposed to all, all activities which other people do and don’t treat them as sub-human, don’t treat them as Gods, and just treat them as part of humanity, so that’s it.