Merry Barua, born in 1952, is a mother who led to a movement in India. What started as one-woman passionate battle to increase people’s knowledge of autism, has today become a national movement. She is the Founder Director of Action for Autism, National Centre for autism, activist, trainer and consultant. She is creating a comprehensive set of services on the Indian subcontinent that improves the quality of life for individuals with autism and their families. She is the powerhouse Ashoka fellow who has ended the ignorance about Autism in India. She is also the recipient of numerous national and international awards.
Here’s a detailed interview of Ms. Zeba Hashmi with Ms. Merry Barua.
Zeba Hashmi: How has your journey as a mother of a special need individual been? What challenges did you face when our country was ignorant of autism?
Merry Barua: There were many challenges along the way. And these ranged from trying to help people understand the condition of my son, which was not at all known or understood in our country and various places across the world at that time. And also, I was myself trying to understand my son. With autistic people, the brain functions differently unlike other disabilities. So, it took me a lot of learning to understand and help him. Now there are training programs, podcasts, books that are available to help families and professionals. But none of these were there when my son Neeraj was born in 1980. As I began to understand him better, I felt an urge to share my understanding across the wider community – with families, the government, the policy makers, the authorities. Disability is often seen as a homogenous group, which it is not. And with people with autism, the brain works intensely different, and yet there are no physiological markers of their disability. Since they look like everybody else, its often hard for society to fathom that there is indeed a disability.
Also, people with developmental conditions like autism, down’s syndrome, or intellectual disability are all expected to fit into the same template. It took me years to understand my child and it took that much longer to get other people to understand my child and understand autism and that’s something which we are still working on. Even now our understanding of autism is evolving.
In the early years, people would often tell me that there was nothing wrong with my son and it was my imagination. At the same time, they would negatively compare my son’s behavior with other children. I was often told that I wasn’t a good mother, either that I didn’t spend enough time with him, or I didn’t discipline him enough.
I was judged for being well dressed and was expected to walk around with my head down, sad, weepy, dressed badly, and I never did that.
Those were all big challenges during the early years.
The other challenge was being constantly told by people to just go abroad for better facilities. And there was always a concern that is this the right decision to take, as I never wanted to go to another country and be a second class citizen, and besides that, if everybody thinks of going abroad then things will never change in India, and I wanted to bring about that change. But it was always at the back of my mind if I was making any mistake by not moving abroad, but I am glad I stayed back.
Zeba Hashmi: Has assisted living become the need of the hour?
Merry Barua: Definitely. In the cities and even in the larger towns, society has changed. There was a time when an individual was born, brought up, studied ,worked, married, had kids who grew up, they worked, and they continue to live in the same city/ town even after the death of that individual. So there were large extended families around; neighbour’s knew each other for years. Those were natural support systems for families, but in modern times people started moving out for education and employment and they are constantly travelling across the country and even abroad. So there is no family around that provides a safety net when there is a higher support requirement for special need individuals when the parents are no longer there. And we know that there is not much in terms of social security from the government. There are only few government homes. In recent times, parents are realizing that they live in a place where there are no families and even those families are also getting smaller and all these situations have forced the realization that something needs to be done for those individuals with disabilities who have fairly high support requirements. It’s not just assisted living, but now parents are also starting different communities and a whole range of different ideas are coming up.
There are places like Ananda where only individuals with disabilities live. Then there are places where parents live along with their disabled children, with an arrangement that when parents die, their child will move into the facility nearby which they have set up. Then there is a concept where parents live near the facility at one place and their children live nearby. So there is a whole range of services coming up and we are in a state of flux. Nobody knows which is the best kind of assisted living to have and everybody is experimenting and hopefully in another 10 year time, we will have proper system in place that ensures that when parents are no longer alive, whatever places where the PwD’s are staying, should be the place which provides them dignity and rights just like the rest of us.
Zeba Hashmi: What would you like to say to the Indian society about their approach towards PwD’s?
Merry Barua: In a society if there are 40 people who fit the average then there are other 60 very diverse range of people. But because that 40 is the largest average, they determine who will be accepted and who will not, and this is where society really has to change. It’s not just about disability, it’s to do with colour, creed, culture, or anybody who is different in any way. Think about how dark-skinned people are treated, how people from North East are treated.
People with disability don’t fit into the average, but if you take all the people with disabilities then we are a pretty large chunk of society that don’t fit into the image of an average person in India, so society tends to negate us and treats us badly. People don’t even have to go out of the way, they just have to be accepting of the person living next door who is disabled, about the disabled person sitting on the next seat of the bus or train. People have to be accepting, and because we have become just an intolerant society that even aging parents are thrown out of the families, discarded at roadsides and railway stations because we are not comfortable with somebody who has any kind of different support requirement. If we really want to create a wonderful society in India, it has to be able to accept the differences no matter how divergent they are from the norm.
If there is a kid who is having a meltdown in a mall or at the airport, then give that family a space instead of jumping on any judgement. If a child with diverse need goes to mainstream schools then the bitterest complainers are neither the teachers nor the students, it’s the parents of other children. They don’t realize that when a kid with a diverse need is in a regular school, it benefits the neurotypical children far more: in learning how to be caring, empathetic, and compassionate. And these learning, they will apply when their parents grow old. When parents complain to the school authorities about a student with disability, they are teaching their child not to be tolerant of anyone who can’t keep up with you, and those parents forget that one day they will also be old and disabled and their child will use on them the teachings that they have given them. It’s so important to be supportive of others. Just be kind. It doesn’t cost money.
Zeba Hashmi: What prompted you to start Action for Autism and Ananda? Tell us about various initiatives taken by it?
Merry Barua: Honestly speaking, 30 years back I had no intention to start it. Action for Autism started very organically because initially, I was getting together with the families, counselling them and going for outings with kids, inviting them over my place. One family wanted me to help them out. I gave a try, then another family sent their kids and that’s how the school started. Then one young passionate girl came to train under me. Then somebody gave us space.
With that young girl, our teacher training program started and then in 1997, we started lobbying with the Rehabilitation Council of India to start a Diploma course for teaching children with autism. And that struggle took us 7 years but now we have a diploma course, BEd and MEd courses for autism and one for cross disability. We got across this acceptance that children with autism need different ways of teaching and training from kids who have other developmental disabilities. In 1995, we decided to start the first parents and professionals training workshop. There was a need and we just did it. That’s how Action for Autism started. Very organically. Basically, I knew what I had gone through- the misinformation, mishandling etc. and I felt why should parents have to go through it. Why can’t they get the right information? That was a big drive behind starting everything.
Another big initiative was when we started training parents and professionals together. Initially, professionals didn’t want to get trained along with the parents. There are lots of professionals with basic educational background and many parents who are highly qualified. We knew that over time we are going to change it and after 5 years, we started having the workshops together. We thought the professionals should have the humility to accept that just because somebody has child with disability, it doesn’t make them intellectually incapable to learn how to work with the child. And now lots of organizations do workshops where parents and professionals are getting trained together.
We did a good deal of work in the area of policy- working with the government, getting autism included in the National Trust and in Rights of Persons with Disabilities Act.
One of the landmark programs was the parent empowerment program that started in 2000, now called parent-child training program. Many people who did that training then underwent teacher training programs and eventually, went on to start their own organizations in different parts of India as well as in Bangladesh, Nepal, Pakistan etc.
We started the special needs school in 1994 to prove that our kids can also learn just like all other children. Later, we started vocational centre, again as a model for replication like our school and training programs so that people can go and start something similar.
We also did 2-year project with 10k pediatricians across the country in 1998-2000 in order to raise their awareness of autism for early diagnosis of the child. Till the time the diagnosis was not happening, the government kept turning around and saying that there are hardly any autistic individuals in the country. We realised that it was difficult to train a vast numbers of General Physicians. So we focused on pediatricians, who were in smaller numbers, so we targeted them for this extremely effective campaign.
In 2000, we started celebrating India Autism week and we got organizations in some of the major metro cities of India to celebrate in the month of December for a week by conducting walks, workshops, paintings and other events. We did that for several years and in 2007 UN declared April 2nd as world autism awareness day, but by then we actually had started celebrating it much before.
In 2011, we also started Views from Planet Autism where we identify artistic individuals with autism and holding exhibition of their works.
For the last 15 years, we have been debating about what will happen to those individuals with high support needs and who would require support in adulthood when the parents are no longer there and it took us a long time to start Ananda because getting the space and the money needed to build the whole setup was a big challenge, but eventually we got this land in rural part of Haryana where we started Ananda, our assisted living program and realized that it’s quite a unique program for adults and it’s also the one where dignity and respect of the adults with autism is taken care of.
Zeba Hashmi: What are the roles and responsibilities of the government in providing support to PwD’s? How the rules and schemes can be implemented?
Merry Barua: There is ‘Right of Person with Disabilities Act.’ We have a law that’s not perfect but it’s good enough. We are really not good at implementation and it happens at multiple levels and it happens because, perhaps, some of the people who have to implement the laws do not have much understanding of disabilities. In the National Trust, there is a concept of Guardianship. If there is an individual who would not be able to manage his financial matters independently, he will require a guardian to help him deal with that. Say parents are no longer alive but there is a sister. Now somebody in the implementation has decided that the sister cannot be the guardian for the brother because they should be of same gender. If there is nobody else in the family of the same gender then he can’t have a guardian who can support him in his financial matters.
Another issue is that if an aging parent puts his child in assisted living situated in another city and they need to take the guardianship of their child, then they won’t be allowed to do so because it has been decided that the parent and the child have to stay in the same city/town. Some of these rules simply don’t make any sense. The implementation of these rules and schemes is a subject of discussion.
Zeba Hashmi: How can we create awareness in rural areas of India?
Merry Barua: We can create awareness of learning needs. I feel it’s not a good idea to go to the rural areas and say I think your child has autism and not provide any solutions. That just creates more difficulties to the families. In rural areas, we sometimes see that if the kid is able to go with the cows and buffalos to the fields, they are contributing to the family and leading a life which is included. If there is no barrier to participation in the community life, then I will not put disability over there. However, if there is a situation where I see that the child has disability and he is not getting the proper treatment, then of course we will want to create awareness, but awareness along with providing some solutions, because without solutions, it just ends up creating more challenges for the families. In most of the rural areas where there is a child who is a slow learner or has autism and he is able to move around and participate in the community, families do not see them as disabled. Sometimes when the child has difficulty with mobility, that is a bigger challenge in rural areas because accessibility is an issue and it can be very hard. I think David Warner’s Disabled Village Children is the best guide to these kinds of situations for all of us.
Zeba Hashmi: What advice would you like to give to ageing as well as to young parents?
Merry Barua: When your child gets the diagnosis, I can understand that the first few years you want to put yourself completely into that. But then don’t make your child the centre of the universe. You have to take care of yourself also if you want to take care of your child. Give yourself breaks. I know for some parents it’s a really tough journey, but do it. If you are a single parent or working mother then it’s even harder but you need a break. And if you are not, then one parent stays with the child while the other goes out. Try to find grandparents, friends, neighbours who will keep your child for a while so that you can go out.
Secondly, for those of us who have more than one child, I would suggest that we don’t focus only on our child with disability because it is unfair to your typically developing child. Do not tell your neurotypical child that they must take care of their disabled sibling. It is not their duty but our duty to take care of them and then if our typically developing child wants to take care of their disabled sibling that’s great. But we don’t want to force them to do it.
To young parents, I would like to say, start saving for your disabled child the way we keep money aside for the higher education and marriage of our typically developing child. But we don’t bother to do that for our disabled child, thinking that he doesn’t need money for these things. They too can have a regular education. They may also want to get married. And then, once we are old, we get worried to think what will happen to our child after us. If we feel that we want them to move to an assisted living, then also you need money.
Plan your finances from the time your child is young. Even your disabled child may go to college or for higher education, you don’t know when our children can surprise us. Do not make assumptions that your child with disability cannot have an education. So put money aside for your disabled child, just the way you would do for your typically developing child. And finally, I would say we have to be accepting of our child, just the way we want acceptance for them from the world. We want people to accept our child and be good to our child. But if I cannot be accepting of my child then I can’t expect acceptance from the world. When we go out and my child has some behavior issues and I get embarrassed and angry then how can I expect the world not to be angry with him as well. But if I am comfortable about it when he is stressed then the world will look at it and feel that if she is ok, then it must be ok.
Charity begins at home. If I want the world to accept and believe in my child then that acceptance and belief has to start with me, and only then it will begin with the world.