The Big Picture
#Voicesforinclusion6
Indrani Basu, is one of the leaders of the Autism movement in India .She has relentlessly worked to raise Autism awareness. Her indefatigable spirit and strength resonates in her voice. There are a few major takeaways from this interview, including her call for parents' activism and failure to mobilise for a common goal. She adds, “A handful of NGOs cannot make all the changes”.
Indrani Basu completed her graduation in education and trained as a teacher from the department of Education London University. She has had many years of teaching experience at mainstream schools in India. After the diagnosis of her sons, she trained as a special educator.
She is the founder and director of Autism society West Bengal (ASWB) in Kolkata. The organization runs several programs that provides support and empower persons with Autism & their families. Autism Society West Bengal runs programs from early intervention, Parent Training, Vocational unit, teacher training program (D.Ed) to a special school DIKSHAN. ASWB has a powerful program for mainstreaming children with autism.
She has coauthored a number of books and papers on Autism. Indrani is a resource person for number of organizations in India and Bangladesh.
1. What, according to you, is disability?
I see it as society's failure to accommodate certain people. Just by the way we have envisaged our society, and certain people don't fit in, we further compound disability. Given the freedom, people with disabilities can be independent and equal in society and make their own decisions.
2. What, according to you, is inclusion?
Inclusion means to accommodate people, be flexible, and understanding the differences.
3. What, according to you, are areas where we are lacking?
There has been an improvement in social graces, people now know different disabilities. They have learnt to use politically correct language, show sympathy. But all of this is at a superficial level. There is no empathy. People have not understood the idea of respect for people with disabilities. Each person with a disability has to cross many hurdles to get where he/she is. There is awareness, but not acceptance. We have made progress in terms of infrastructure and systems, yet a lot of changes are to be made that are deep-rooted. Implementation is just at the surface.
The disability group does not exercise its right as citizens. Our children don't learn to make choices. Going forward, it influences their decision-making abilities as an adult, consequently the entire community. Don't demand, don't ask for anything, is fixed as a precedent for good behaviour. Unless they learn to voice their opinion, and we encourage decision making, they will remain dependent and will not grow. While this happens with the children, parents have not organised themselves as a strong collective voice. One sees some sparks, some raised voices here and there, but largely it is silent. Rather than act together, there is too much internal strife. A general political movement is not there. All governments' work by appealing to groups. It's incumbent we present a united front. Does any parent ask for government policies? Do they ask for the rules and regulation sheets? Why are our young adults not casting their votes? They may not make an informed decision, but so be it. We as adults, with all our faculties, take decisions that backfire.
We can count the inclusive schools in India and they are all exorbitantly priced. Personally, I found children labelled severely challenged doing very well in these schools. But these are for families with money. For a lot of families, access to intervention, education, therapies is out of reach.
4. What are the positive changes you have seen?
The public is a little more tolerant. I wouldn't say accepting. Earlier, people would run in different directions, take their children away and the disabled person would feel stigmatised. People with disabilities were either looked down upon or scorned. Things are a lot better now.
5. What are the difficulties encountered in rural areas?
People find it very difficult to accept the fact that their child has a disability. They look at it more like a medical condition that can be cured with some medicine. Due to the lack of access to services; they end up making do with the limited choices they have. They have little to prepare or work on. Maybe they will go to a place nearby. They keep looking for doctors to treat the child. Parents are convinced if you teach the child abcd he will get better. The child cannot sit and focus, he cannot communicate, but parents want the child to be taught. They believe it shall cure him of all ills. I find economic hardships in pockets in urban areas as well. Then again, the story is the same.
Urban or rural, the one question that keeps popping up is what will he/she do when they grow up? In rural West Bengal, extended families are breaking up.What will he do? Where will he go? These remain unanswered.
6. What are your views on adults being employed in the corporate sector?
Change is happening, but compared to the numbers, again, only a miniscule number of people have been gainfully employed. But an area where I have observed significant changes, especially post pandemic, is in the large companies. They have become more supportive of parents with special needs. This has been reflected in their policies in terms of work from home, reduced travel, and other concessions.
7. From our end, what are the reasons you attribute to the low employability?
First, we think of employability only when the person has reached adulthood. Second, the delay is because parents hope the child will work on academics. But the question is even getting a Post graduate degree, what do they do? Taking up a job and independent living is a different story.
8. Before concluding, can we just look at a specific instance of inclusion for a family in a restaurant?
Foremost, I would work on training the staff. I will train them to be more aware, and not to judge people. What matters most is to be welcoming and put the family at ease. At the core, the attitude of the staff plays a key role.
Helping the family sit in a quieter space, ensuring their comfort levels while seating them. A thoughtful design in terms of physical accessibility, ergonomic chairs, menus that are more visual or maybe even menus that can talk.
A well planned interior design in terms of lighting, colours, acoustics… It is important to cater to an individual's requirements and measure of comfort. If required, fidget toys can be made available. It is really important not to take advantage of the impressionable people.
Thank you, Indrani mam, for your insights and the call to project a strong front for the welfare of the community.
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