LILA: Let us begin this conversation by contextualising the discourse on disability in India. Historically disability was considered a shortcoming in individuals, but now the discourse has evolved to acknowledge impediments as being furthered by one’s environment. Can you tell us about your work in this space, and how that informs and furthers this discourse…
G Vijayaraghavan: My work in this space started when I first set up a preschool for the deaf in 1993. Then in 1997, I set up the National Institute of Speech and Hearing (NISH) with the support of the Government of Kerala. I looked after the NISH for about 20 years as the Hon. Director. In March 2017, I decided to move on for two main reasons. One, the process of converting NISH into a Central University – a plan that was announced in the 2015-16 Union budget – was taking time. Two, I wanted to focus on autism.
When we talk about disabilities in this country, there are a few things we must focus on. The first is that for a very long time, the Eastern culture as a whole did not want to accept that there were people with disability in their community, so they practically pushed such people aside or kept them hidden. When you go to the West, you find third generation individuals with autism. But in India we don’t find many second or third generation individuals with autism because those with autism never got an opportunity to get married. Similar is the case of intellectual disabilities like Mental Retardation (MR).
Disability as a major concern started getting some public attention in India through the blind, because of the institutional support they were given. When NISH started, we tried to make people aware about hearing disabilities as well at the state level. But, it was only about eight years ago, when I was in the Kerala State Planning Board, that we decided to seriously look at this area and a State Initiative on Disabilities was launched. We constituted a working group – the first ever such initiative taken by a Govt anywhere – and found that in the area of autism, there were big gaps. A lot of the work that was happening in this area was actually black boxed. Parents would leave their child at a centre for autistic children throughout the day, but they didn’t know what was happening at these centres. A lot of people who were not qualified and did not know the science behind these conditions were working in this space. Another thing that was happening was that cases of autism, MR, etc. were all being handled together, which wasn’t bringing the best out of these children.
People with autism, for instance, usually stand on a spectrum. There can be a big difference between someone on the lower end of the spectrum, and someone on the upper end. If I go to the US today, there are many universities where I see professors who fall in the mid to higher end of the spectrum teaching subjects like Mathematics, Statistics, etc. But in our country, such individuals are thrown out of the education system by the time they reach class 10, because they can’t write English or perform in Social Studies in spite of being exceptionally good at subjects such as Mathematics, Art, Music, etc. Despite having different education boards like CBSE, ICSE, etc. any school you go to, you still have to learn all the basic subjects. At most they will give you an exemption for a language or provide support by giving you a scribe for public examinations. Sometimes you may find that a child cannot write, but can use a computer and keyboard very well. So the child could have done the whole exam on a computer, without a scribe. Or the child needed an assistive aid because the grip of the pen is not good enough. One can agree that some of these facilities are also misused by people who avail a scribe to get their child more time for the examination. However, that only highlights the problem that those who should actually be benefiting from these schemes are not getting their aid.
With the objective of making a change in the area of Autism interventions, I set up the Centre for Autism and other Disabilities Rehabilitation Research and Education (CADRRE) in 2016.
LILA: Both the organisations you have founded – NISH and CADRRE – work to nurture skills amongst differently abled individuals that can help them gain independence and employment. Can you tell us about the livelihood opportunities available to individuals with disabilities, as well as the barriers that exist?
G Vijayaraghavan: If you go back some 10-15 years, you will find persons with disability working in professions like gardening, book binding, etc. We assumed that they don’t have the capabilities for anything else. The opportunities for people with disability have been very limited. You could find blind people in professions such as telephone operator and sometimes teaching, etc., but even for them, the barriers were very high.
Normally when we talk about barrier-free access, we assume that it is about a ramp in a building. But that is not what it means, barrier-free access is a concept we need to understand very clearly. What it means is that there is no barrier for anybody. It creates an experience of access which is at par with that of the people without disability. Barrier-free access would mean tactile markings on the ground, so that a person who is visually impaired can walk on his own using his white cane, lifts that have braille and audio inputs.
Similarly, when you look at a person who is deaf, the barrier there is conversation. So you need to have the use of sign language and subtitles. In the US, for instance, when political campaigns happen and a presidential candidate is talking, even if a single person gets up and says they have a hearing disability, the candidate cannot go on without an interpreter. This is the case for any public meeting. However, for us in India, other than the weekly news that has a sign language interpretation there is very little.
One must acknowledge, however, that slow and steady change is underway. Fifteen years ago, we did not even have a proper Indian sign language. In 2011 an Indian sign language institute was established in Delhi. In the recent past the ministry of Information and Broadcasting has also taken steps in the direction of inclusion and mandated news channels to do at least one programme a week with a sign language interpreter. I know of many Malayalam TV News channels that have started following this guideline.
The problem persists even within the education system. Once a child is identified as being deaf, he or she is either sent to a deaf school, or an integrated school. For them to communicate, while oral language is okay, sign language is what would benefit them the best. Unfortunately, even in government-run schools for the deaf, you don’t have teachers who know sign language. So the teaching does not happen in sign language. Whatever a deaf child is able to absorb or assimilate from class is limited. They often do not understand a lot of concepts. It is like you don’t speak German, and you have a teacher talking to you in German, but also uses some gestures. So you understand what she is saying to some extent because you are generally bright and have some context through books of what is being talked about, but you will not get the complete concept.
So if we want change, it has to start with the education system. Unless you really relook and overhaul the education system, you are not going to make a change in the sphere of livelihood. And you will find that individuals with disabilities will continue to be pushed to the lower strata of society.
LILA: I would like to talk a little about the education part of this discussion. You have rightly pointed out that any improvement in livelihood needs an improvement in the education system. But if the current situation is such that even teachers at a deaf school don’t know sign language, how do we get there? What are the possibilities of moving forward?
G Vijayaraghavan: These things cannot be done gradually; implementing changes one by one won’t work. If we decide that this is important, we need to say that the teachers in such schools will not be allowed to teach if they don’t know sign language. The government may say that those who are appointed from now on will need to be certified in Indian Sign language and for existing teachers, who don’t know sign language they can be given a certain period by when they can get certified or they can be reassigned to another school. So make it mandatory, and new recruits will only be taken if they know sign language. You have to remember that if you take six years to implement these changes, then the first batch to come out of a reformed school will be in another six plus fifteen years. So we need to move fast.
The other thing is integrated education, where you make it mandatory to give admission to students with different impairments. What happens in these cases is that they have a resource room in the school, and everybody with a disability is brought there. The resource teacher is usually trained either in teaching the visually impaired, or the deaf, or students with intellectual disabilities. But the same teacher is actually teaching students with all these disabilities. It is like telling a German teacher to teach Hindi or English. It is therefore essential that every integrated school has teachers that specialise in the required area of disability. So you can have a class where all the deaf children will go, one where all children with autism will go etc.
LILA: Where do we stand right now in terms of having the tools or training to design educational methodologies for students with different types of disabilities?
G Vijayaraghavan: There is a lot to be done in that area. If one rated what we have on a 10-point scale, I would probably give it a 2. If we try to start doing research now and implement the solutions, it’ll take another five years. What we need to do is get people who work in that field together, and ensure that we have at least a couple of people from each area of disability. Create a small working group with these people, tell them to come up with recommendations in less than a month or two, and then you can start off, and make changes as we go forward.
LILA: Why do you think the inclusion of people with disabilities in the educational and livelihood space has been so poor? According to a recent study, only about 2% of the population in India is disabled. Do you think this has been a factor in the absence of action?
G Vijayaraghavan: The problem is that it is not a big enough number for anybody to be actively involved in it. When you say 2-3%, that would be the people I would call profoundly disabled. All of us have our disabilities, but we are able to find a way. However, the livelihoods of about 3-5% of the population are severely impacted by disability. Just to give you an example – there are over 29 lakh children in the country who are autistic. You can be sure with what we have today, none of them will be able to find any kind of livelihood when they grow up.
Let me give you a story from NISH. We first started with a Diploma in Computer Engineering about 18 years ago. We said that we don’t want somebody to give a deaf person a job out of sympathy. So we created the curriculum for this programme for the first time ever in the country. Then, we got professors from engineering colleges, who evaluated B. Tech. and MCA projects to come for the vivas for these students. The students ended up performing exceptionally well, to the extent that one of the professors who had come from a regular university said that some of these projects were better than the Masters of Computer Application projects he had evaluated.
So, based on this feedback, I went to the then secretary at the Department of Social Welfare and told him that I wanted to get government approval for this diploma programme, equivalent to the diploma given by the Director of Technical Education. I told him that the Director of Technical Education had also approved this, because they believed that the quality of what we were doing was good. He said they could only give a certificate. So I told him that the certificate was for a one-year course, and this was a three-year programme. His reaction was that you cannot give anything more than that for these kind of people. I immediately told him that he was not fit to sit in this position. I could do that because I was an Hon. Director and wasn’t taking anything from the government. So I said you do what you want, but I will make sure this is done.
He then marked our file to the legal department. When you mark something to the legal department, you know it’s not going to come back anytime soon. I went to the chief minister and told him about this. He agreed that this was not okay and that they could not have a guy like this working in this department. Subsequently, the file was called for and our programme was declared equivalent to a three-year diploma.
At NISH, we then moved onto offering degrees. We started first degree programmes for the deaf, including Bachelor of Computer Science and Bachelor of Fine Arts. These were affiliated with the University of Kerala. The Fine Arts programme curriculum came out well, because the Head of the Board of Studies for Fine Arts was very empathetic. He understood the specific needs, came up with a lot of suggestions, and created a very good programme. In Computer Science, the head of the board of studies was initially very adamant that the programme we were creating would not work. He said computer scientists needed to know how to develop an operating system or a compiler. My response was that these are all systems that we are using today. Even from Kerala University nobody would be designing or building them today. So we had a long argument, and I said let this board of studies meeting be adjourned. After that, I went and met some of the members of the board individually, and they agreed with my line of argument.
Ultimately, at the next board meeting, we put up these ideas in a better manner than before, and all the other board members also agreed. We cleared the programme and were able to get that course done. Most of the students who complete that course now are able to get a job. None of them got a job because people were sympathetic, but because their capabilities were as good as any other. And those who employed such people with disabilities found that the productivity of their teams went up, because the person sitting in the team thinks that a deaf person is able to do so well, so I should also do better.
A few years ago, SAP in Bangalore decided that they would look at recruiting individuals with autism. They did a first round of recruiting 6-7 people. Except for 1-2, all the others continued there. When SAP’s headquarters saw this, they decided that they would employ one percent of their staff from among individuals with autism which is about 6000 individuals. Other companies like EY and Microsoft have also started an initiative globally called Autism at Work
So opportunities are there, but we need people to drive them. It works when you have somebody with empathy, but you also need someone to keep pushing these causes.
LILA: One of the lessons that we seem to be drawing from many such conversations is that in order to bring meaningful and substantial change, we need to start seeing individuals from marginalised backgrounds – whether individuals with disabilities, or people from the LGBTQA+ community, or socially ostracised groups – in leadership roles. From your experience of working with differently abled individuals, as well as closely with the government and corporates, what possibilities do you see of realising such a future?
G Vijayaraghavan: It is not impossible but with the prevailing systems we find that political parties don’t find the disability-related groups strong enough a vote bank and so they tend to ignore them. However, if we have enough people who are empathetic to the cause I am sure changes can be made. That is why the initial PWD act and the recent PWD Act of 2016 came about. Also, there are several initiatives by states which are being replicated by other states and on a national level.
