Conversations around Disability Rights, Policies, and Activism in India
Updated: Jun 12, 2020
Interview by: Kausumi Saha
Score by: Inder Pal Singh http://ipsingh.net/
The Constitution of India ensures equality, freedom, justice and dignity of all individuals and implicitly mandates an inclusive society for all, including persons with disabilities. And yet, a majority of persons with disabilities do not have equal opportunities in India, and face several environmental and attitudinal barriers to education, employment, healthcare services, and so on.
In this podcast, Kausumi Saha speaks to Nipun Malhotra, who was diagnosed with a condition called arthrogryposis soon after birth. Nipun is currently a disability rights activist, and talks about his life, work, and his thoughts on disability policies in India.
KS: So I'm sitting here with Mr Nipun Malhotra, the CEO of Nipman Foundation and speaking to him today about advocacy in the disability space. So, Mr Malhotra, can I call you an Nipun?
NM: Yeah sure, please go ahead.
NM: So I was actually born in 1987, and India's first Disability Act...as you might know, the Persons with Disabilities Act came up in 1995. So there was a lot of lack of sensitisation and awareness about how to interact with persons with disabilities, really, when I was born. When I came out of my mother's womb, my arms and legs were fractured and my parents obviously took me to doctors, doctors did not know how to interact with a child with a disability. They told my parents that Nipun is gonna live the life of a wooden doll. There was another doctor who told them that, well, it's worth keeping him alive because his neck is straight, but you should not really expect anything from him, and blah, blah, blah. You know, because even doctors...and this was pre-Google era, right? So my parents couldn't just Google that, what is this disability? Is disability ka kya matlab hota hai? How will it impact a person's life? But I think my life changed, when this one doctor told my mom that Nipun, even though he's disabled, will never deprive you of the joys of motherhood. And I think it's from that moment on, she took it on as a personal battle to give me a normal or ordinary life...and the first step towards that was sending me to an ordinary school. Now many people, including people in my own extended family, were against me going to ordinary school, because they thought I will not be able to survive in an ordinary school. There were people in our social networks who even said, why don't you homeschool him? Why would you send somebody like him outside? But I think both my mother and my father, both of them, I think played an integral role here, where they decided that if he wants to face a normal life later, it's better if he gets used to a normal life at this stage in his life. And that started the journey towards going to an ordinary school.
NM: It wasn't easy. There were 15 to 20 schools that rejected me, before one finally accepted me for what I could do and not what I could not do. This was in Bombay, I used to live in Bombay at that time, Mumbai now. And that's how my school journey started...even teachers did not really know how to interact with a child with a disability. I'd missed out on most of nursery and kindergarten and advanced straight into class 1. And it was tough for me because I was trying to cope up with three years of education in one year. But by the end of class 1, I started doing well, I remember. and then my teacher called up my mom one day before the results and said, I want to meet you. And she thought that she's gonna get a pat on the back because well, Nipun has done well. But instead when she went to school the teacher said, I'm not gonna promote Nipun because I cannot read his handwriting. And my mother had to tell her that you know, if you are not promoting him because you can't read his handwriting, it's better to keep him in class 1 for the rest of his life. And sense prevailed and I was promoted to class 2 and so on and so forth.
NM: School life was both good and bad, good because I think I got a trailer of what the “normal” or “ordinary” world is, but also slightly negative because I think children at that age are not really sensitive. And I think things have improved now. It was, in fact, worse at that particular point of time. I went through instances where children have tried to choke me, by putting an eraser in my mouth, I've been socially ostracised. But what I also realised during my school life is that you know, if you really want to be in a position of power in society, you have to be somebody who's a giver, rather than a taker. And I thought that the best way I can be a giver is that when my friends are playing sports or cricket or football, or singing songs, if I can, you know, concentrate on academics during those extracurricular periods and start excelling in academics...and soon by class 6, class 7, class 8, I was topping the school consistently. And now things changed, because earlier children were not inviting me to their birthday parties, they were not even talking to me, etc. Now children knew that, you know, during the exams humein Nipun ko phone karna padega to solve our doubts etc, and if you're not good to him throughout the year, he's not going to pick up the phone. So I think that's when my school life started changing and eventually I topped the school in 10th by scoring 87%...in 12th I topped the country in Business Studies, scoring 98 marks. So that's a bit of my school journey.
KS: So would you say that as a person with disability, you would always have to go that, sort of extra mile, than, say, a person without a disability, an able bodied person, just to be taken seriously?
NM: I think this is something a lot of people with disabilities and their parents come to me also with, this kind of thing, where you know...and I think it is sad that a person with a disability has to try extra hard to prove themselves. I think that happens in any minority, right? There are...in various countries, people with a certain religion, maybe have to try to prove extra hard that they are loyal to that country. There are people from a lower caste who have to prove that we belong here not because of a quota but because we deserve to be here, because of our academic excellence. But for a person with a disability, it's even more there because I think it's a financial burden on a family too, when they have a child with a disability, because there are extra medical costs, there might be extra caretaker costs, etc. But my message for persons with disabilities is that, do you want to go that extra...And I'm sure there will be people with disabilities who will be listening to this podcast, right? So my point to persons with disabilities on the other hand is that, do you really want to settle for a mediocre life? Or do you want to work, go and push yourself hard and actually capture that extra mile. Of course, it is not fair that you are expected to do it, but I'm somebody who actually started looking at it in a competitive way and has started flourishing in it. And I know many other people with disabilities who flourished because of that.
KS: Right. And how would you say your experience of business school was, both in terms of how your peers or your teachers behaved with you, but also in terms of accessibility like buildings…
NM: Uh so my school...I think one of the biggest problems with my school, I went to a school in Bombay first and then Noida. Physically in terms of infrastructure in schools, both of them, at least my Noida school was very accessible in that sense. It was more of an attitudinal barrier for students and in some teachers. A lot of my teachers were good too but there were some teachers who either sympathised with me, which is again bad, or they looked through me, which is bad too. I finished my school in 2005. And it was then time to apply to colleges and actually speaking, something that you might not know, because I know this is not there in my official profile that you've read through, etc. is that I studied in a private college for two years for a scrap of paper because most colleges in Delhi University were not really accessible. So I got admission into this private college, which I would think, which I think was taking a shortcut in life in that sense. And, you know, my parents had to fight even to get me into that college and to their horror, in 2007 I decided to quit that college and said, I don't want to go to this college anymore. I deserve the best of education.
NM: And I applied to Delhi University too and I remember my St. Stephen’s interview, because the principal actually told me that, Nipun we love your CV, we want you admitted. But the Economics classroom has been upstairs for 125 years and it cannot shift down for one person. And I said, no problem, I'll go upstairs every day. And I used to make people lift up my wheelchair, it was a physical risk to me. But I used to go up to the first floor every day. And I did that for four days, and eventually the college itself decided to shift the Economics classroom down for me. And I think the lesson that I learnt there was that, if you persist, you can really change attitudes of any institution towards you, even if that institution is older than the history of your own country in that sense, right. After that, I went to Delhi School of Economics. Delhi School of Economics was actually not very accessible, St. Stephen's I think I had a lovely time once I got them to shift it down. And in Delhi School of Economics, in the Economics department there is only this one lecture theatre that is accessible, and the college administration wasn't as cooperative as in Stephen’s in that sense, because they forced me to take whatever subject which could be accommodated there rather than me choosing my own subjects.
KS: So whichever classes were available downstairs...
NM: Exactly and I wanted to study more developmental and more descriptive subjects, and I was forced to take up more mathematical subjects, which just happened to be...yeah. Talking about educational institutions, I've also gone to ISB after that, I did an executive MBA there. And despite the fact that ISB is not really a governmental college in that sense, it is very accessible. And I think a lot of the newer private universities that are coming up, like I believe Ashoka has also done a few accessibility audits, etc., are looking at accessibility in that sense.
KS: Is this happening because of laws or policies, or because people in general are becoming more sensitised, or a mix of both?
NM: I think it's a mix of both, in Delhi University every college today for example, not just Delhi University, every government college in this country today has to have an equal opportunity cell, right, as per the RPWD Act. That itself is the first step towards making a college accessible, I go to a lot of colleges and I speak there, and interact with students, faculties and I've actually realised that the equal opportunity cell in the college almost becomes like an internal activists’ cell in that particular college. What has also happened now is that the 2016 Act, of course, has reservation for persons with disabilities, but it started in 1995, right, in jobs. So a lot of the teachers and faculty members in colleges today, who are persons with disabilities have started coming in from 1995 onwards. So they are in the system for around 20-25 years, and they have reached a position where they can be decision-makers and they can push towards making the college accessible. So that today students have a better time than the time those teachers had when they were students in those colleges in the 80s and the 90s, I guess, because they became faculty after 95, right?
NM: Secondly, when it comes to private education institutions, what's also happening is that a lot of these private educational institutions have collaborations with colleges or business schools abroad. And a lot of these international business schools, etc, have much higher standards in terms of accessibility guidelines. Of course they are way more expensive than the public institutions, so of course, affordability becomes another factor, but since you talk about accessibility here, yeah, I think even the private universities are doing a lot now.
KS: Since we are on the topic of governmental policies, what are your opinions on existing policies on disability for instance, the UDID, the National Database for PWDs, the RPWD Act, etc.
NM: Wow, I think it will be better if we go one by one, you asked me four questions together!
KS: Okay, sure, please…
NM: Okay, so let's talk about the UDID first, right, since you mentioned the UDID. I think the UDID is an interesting concept. And I use the word interesting because I think it's come up with the right intentions. And there are some people in the Ministry who are really driving it now...I think it was really slow to start with, where only a handful of people even in Delhi got the UDID in a year's time. But now the numbers have started improving, and persons with disabilities have started getting the UDID card. But at the same time, I don't understand the logic behind the UDID card to be very honest. Firstly, because the UDID card was supposed to be a card that replaces everything else as a person with a disability. But the railways still insist on a separate railway concession card for persons with disabilities, you still need to have a disability certificate that leads to your UDID, you still need an Aadhar card because UDID will not really replace your Aadhar card. And I think it's become fashionable these days for every government that comes into power to add more and more degrees and certificates that somebody really needs. For example, now I'm sure NRC and CAA are going to lead to some citizenship certificate too. So...and in today's digital age, you really need so many cards and certificates, why can't the Aadhar card just cover everything, is my personal opinion, you know, and I think it would have been much easier if the Aadhaar…
KS: And that was the purpose of the Aadhar card in itself, was to be one, sort of, document that...
NM: That includes everything, and I think it's a financial cost to the Ministry of Social Justice for the UDID card, that money could have already been spent on accessibility or on better policies or whatever. If we do have to implement it, we should implement it well. And I am glad that over the last three-four months, they've increased the pace at which the UDID card is given.
KS: And how do you think, whether it's the RPWD Act 2016 or the National Database that has been conceived as a result of it or other…
NM: The National Databases is a result of the UDID card, right, is what they want. Yeah as per the RPWD Act 2016 is concerned, I think it was a very good and progressive Act. And I think the one credit that I will give to this government is that they came up with the RPWD Act. Of course, the RPWD Act has shortcomings, no Act is perfect. But that's the restriction that you face in a legislative democracy, where you cannot really keep hoping for an ideal Act but at some point, you have to push the government to implement and table the Act, right. India signed the UN CRPD in 2007. After that the government wasted, the previous government wasted seven years doing nothing about the Act. And in 2016 this Act actually came into power. So I think the one thing I would give this government full credit for is that they at least finally decided to come up with a progressive Act, which was way better than the 1995 Act. But the problem starts as soon as I compliment the government on coming up with this Act and tabling it in Parliament and having it passed. Well, I think the implementation of this act has been very poor. There are a lot of provisions in the Act that said within five to six years everything will be made accessible. We haven't really seen much in that sense. This Act is weak in terms of its discrimination clauses, if you look at section 3.3.
KS: So what is the purpose, exactly, of having this National Database for PWDs?
NM: The national database...the UDID card has been basically built as it’s supposed to be one card that is a connect for all welfare schemes and all that jazz, which the government introduced it in that sense. But the problem is that all the welfare schemes are linked to some Ministry, right, and the Ministry of Social Justice acts more like a nodal ministry, and no other ministries will be accepting this. So it's the bureaucracy between ministries that has really got it stuck in that sense. But yeah, I was talking of discrimination, like for example, discrimination is something that has been left as a loophole. States have been very slow in implementing rules for the RPWD Act. And also second, and there's not been any consistency in terms of policy implementation, with respect to the RPWD Act. And I'm going to give you an example of that for the RPWD Act. In its accessibility section it talks about, whenever any building is given a completion certificate, it should follow the Harmonised Guidelines issued by the Ministry of Urban Development, which were issued in 2016. Not a single state, irrespective of which political ideology it belongs to, you know, whether it's a BJP state, a Congress state, an AAP state or a regional party state, not a single state has so far changed the building bylaws to include the Harmonised Guidelines. So today you can actually get away by creating a building which is not accessible at all, getting a completion certificate because the PWD official will come and only look at the building bylaws and the building bylaws won't even mention accessibility. So this Act has just become an Act which, which is kind of spineless in that sense because there are a lot of other laws that need to be brought on.
NM: For example, this Act talks about...I'll give you another example, you know, just talking about examples...and in fact I’m filing a PIL on this, that this Act actually talks about how all content has to be made accessible for persons with disabilities. How do you make content accessible for blind people? It's from audio descriptions. But the Central Bureau of Film Certification, over the last four years I've filed multiple RTIs, and there are others who've been fighting about it, has not really done much to ensure that movie producers, for a movie above a certain budget should release audio descriptions along with the movie.
NM: So these are just two examples, but I think these two examples kind of explain the challenges in the implementation of the RPWD Act.
KS: On the topic of PILs, we do know that you have filed quite a few PILs with the Supreme and High Courts. Can you tell us how the judicial system accommodates you as a person with disability, whether, also in terms of accessibility in terms of other...is there any discrimination that happens at the level of the judiciary, against persons with disability?
NM: I don't think there's any discrimination as such that happens in the judiciary with respect to persons with disability. Of course, accessibility to courts is a challenge, both for persons with disabilities and people without disabilities. For persons with disabilities, it becomes more exaggerated because it's not just the financial cost, but it's also the physical accessibility cost, right? A lot of courts are old heritage buildings, which are not really physically accessible to persons with disabilities. And in fact, I've had the pleasure of doing accessibility audits of a few courts. So I actually know the kind of challenges persons with disabilities face while accessing courts. And what people don't realise is that it's not just the courtroom that has to be made accessible, there's a lot that goes on right? The place where you file your case, the place where you have to get your form made when you are entering court, etc. So every point of contact where a petitioner or a lawyer has to interact with the court should be made accessible, you cannot just look at one thing and they say that it's accessible. Though a lot of courts in India feel that humare court accessible hai, courtrooms, so we are accessible. They just don't realise that there's a lot more that goes on into it. As far as getting justice is concerned, I think persons with disabilities don’t face any specific challenge which is more or less compared to others because we face the same challenge that any other petitioner faces, which is, it's of course a roster of judges, some are more pro disability, some are less pro disability, just like for any other cause, in that sense. The Indian judiciary is time consuming. And it's time consuming for whether you're disabled or not disabled. So I don't think there's anything specific in that sense.
KS: Right. So let's circle back a little bit. Let's talk about what drove you to become an activist? Was it a particular instance, was it an incident? And, you know, what role does your disability have in your life as an activist?
NM: I think it's definitely my own life that impacted me to become an activist. I am not somebody who, at the age of 10 said that, I went and told my parents, oh mereko activist banna hai, mujhe persons with disabilities ke liye fight karna hai...you know it isn't that kind of a story. I mean when I was 10 in fact, I wanted to be a cricket commentator. I loved cricket, you know, and Harsha Bhogle was my pen friend. And I thought that I want to become India's next Harsha Bhogle, because I can’t play cricket but I can commentate on cricket. But then in Delhi School of Economics, I actually decided to sit for placements. And when I sat for placements, I saw the discrimination persons with disabilities faced firsthand, including being rejected by a company because they wanted to test whether I can sit on a wheelchair for eight hours a day. Which is totally bizarre, because I’ve gone to an ordinary school, I’ve gone to a mainstream college, I’ve undergone Master's. And others said that, we don't believe that these are your academic qualifications. So we want a letter from your principal at St. Stephen's and a letter from your department head in D-School saying that you were actually doing all this and you're not forging your CV or whatever, which is, again, humiliating. And I walked off. A third that...I went through seven rounds of interviews and then they eventually said, we don't have a disability-friendly toilet, so it's better not to hire you. And when I told him that I can control my bladder and I'm used to it. They said no, no, you might sue us tomorrow. So it's just safer not to hire you. I’d not even thought of suing anybody at that time, since then I've sued a lot of people of course. But, yeah, those things kept happening. And I was disappointed. I was dejected. But I think that eventually pushed me to do what I'm doing.
KS: So in your opinion, in India when we talk about disability, whether it's in terms of advocacy, accessibility, sensitisation and so on, do you think people take into account the diversity that just the term ‘disability’ encompasses? Do you think that is something that we have started taking into account or, we are still, sort of, we have…
NM: I think, if you look at India's Disabilities Acts, both the Act that came up in 1995 and the Act that came up in 2016. They actually list down seven disabilities in that case and 21 in this case. If you are this, this or this, you are disabled. Which itself is restricting disability, right? I mean, if you look at a lot of the more Western or developed countries, there's no blanket definition of disability, but there is a social model of disability, where disability is any barrier that exists in society that prevents the full inclusion of a person in society. That's why the onus is more on society. I think India's gone from the...moved away from the charity model of disability and thank God for that. But we've moved towards a medical model of disability, where we're still restricting disability according to certain brackets. So when you’re only looking at those 21 disabilities, now when you go down further, when you look at quotas and jobs, you further reduce the number of disabilities.
NM: Because I was actually reading somewhere that some disabilities like hemophilia, etc. are not even recognised amongst their disabilities that...even though they are there in the RPWD Act of 2016, and they are not recognised during the 4% quota for jobs. Then further down when you go in for accessibility audits, most people don't even know what an accessiblility audit is. Yeah, so when you talk about a ramp, yes, they'll know that if you make a ramp, the building will be made accessible. But even the ramp, they won't know that the ramp has to be of the ratio 1:12. They will just think that ramp banana ek formality hai, humne ramp bana diya toh humne apna kaam kar diya. So I completely agree with you, but I think the problem starts much earlier in terms of framing the law itself. Even though I complimented the government for the RPWD Act 2016, and I continue to compliment them, because I think change is never really drastic, right? You don't move from A to Z but from A to B to C. And I think I understand that. So the 2016 Act is way, way better than the 95 Act. But this is I think, something that it gets wrong.
KS: It does. It does when it comes to listing the number of disabilities, it has its shortcomings.
NM: Even societal progress leads to a lot of temporary disabilities, etc. Because there are a lot of disabilities that are coming up because of the way people are sitting in front of the computer every day, neck problems, etc. So I think society leads to...societal changes lead to a lot of…
NM: Yeah, yeah.
KS: especially in terms of poverty and all that…
NM: And you know even the Coronavirus is not a disability, it's a virus but that's just an example about how, as our society is moving forward there are various new problems that keep coming up. So do you want to sit with a law which was made in a particular year and a defined disability or do you want to have something which is flexible enough to include anything that, over time, comes up.
KS: So if we can get back to you on a personal level. How do you negotiate your individuality in an ideological space that is constantly trying to put you in a mould that, you know, you're a person with disability, and that comes with a set of ideas, but you're still an individual. So how do you negotiate that?
NM: I think that that's an interesting question. I've not been asked this question very often. So I'm glad you have actually asked me this question. But I think when you look at any individual, they are way beyond just any one thing, right? I think everybody is a complete human being and a complete individual. And that's why it's a person first, before a disability. And I think I'm somebody who's been lucky to have had both family and friends with whom I don't even discuss my disability. Like, for example, a lot of my friends you know, they tell me that when we're having dinner with you or we’re chilling and we’re sitting with a glass of wine or whatever, we don't even realise that you’re a person with disability. I think sometimes both persons with disabilities and their own families do get into this sympathy trap, you know where they start thinking of the disability all the time. But for me my disability is just another identity just like for example, that I'm an Indian or the fact that I'm a resident of Delhi NCR.
KS: So Nipun, you've worked with a lot of different kinds of organisations, you know, structurally that have ranged from corporations to startups, NGOs, etc. What are your opinions on the startup culture of India in terms of say, giving opportunities to PWDs, in terms of the activism space? Have you noticed a difference, if at all, would you like to comment on that?
NM: I don't know what exactly you mean by the startup culture in India giving opportunities to persons with disabilities because the definition of startup also in India keeps changing in that sense, but I think there are some industries that have really led the way in terms of giving opportunities to persons with disabilities. The tech industry is one of them. A lot of technology companies are focusing more, both on persons with disabilities as customers and as employees. So they're making the production technologies accessible, they're also ensuring that they are hiring persons with disabilities. The hospitality industry is another industry that has hired a lot of persons with disabilities, they're a big employer of persons with disabilities. Because they also realised that hiring persons with disabilities makes customers feel that there's a larger purpose with this particular institution and that's the employer employing many more persons with disabilities.
NM: As far as the startup culture is concerned, actually a lot of startups are coming up that are specially catering to persons with disabilities. There's a couple of travel companies that have come up that are planning holidays for persons with disabilities and the elderly. There are a lot of software companies that are specifically making softwares for people with both learning and intellectual disabilities, a lot is happening in the education space in that sense. So we have a lot of startups catering to persons with disabilities in that sense and I think that is great because, persons with disabilities can be a big customer to anything in that sense.
KS: So Nipun, what are your future plans in the activism space? For instance, you know, do you want to...do you have any aspirations to work in the educational or vocational training sector for PWDs? What is the way forward for you?
NM: So I always believe that there are three challenges persons with disabilities face, and I like to call them the three As, which are attitudes, accessibility and affordability. So I think removing all these barriers and trying my bit to reduce these three barriers for persons with disabilities is what I'm trying to do. And I think it doesn't necessarily have to be in the activism space, it could also be a software in that sense, right? Because for example, I came up with this video and I'm sure your listeners can actually Google Search for “Baba Wheelchair Nipun”. They'll find it on YouTube. It's actually kind of a parody video trying to change attitudes towards persons with disabilities. So yeah, I think these are the three areas I want to work in. I wouldn't...I would not like to bracket it into anything like “educational” or “vocational training”, but anything that really serves the purpose of solving these challenges that persons with disabilities face is how I’d like to spend my time.
KS: Okay, thank you.
NM: Thank you.