Posted by Merry Barua, New Delhi
Around 20 years ago when Neeraj turned 20, and we were climbing warily out of a spiral of regression that had wracked his and our lives, the thought had popped into my head: What happens to him when I drop dead?
Neeraj was one of the oldest youngsters with high support needs that I knew. There were a few others, but as parents with vulnerable children, it was hard for many to look their mortality in the eye. Prevalent beliefs were: ‘If I leave enough money, that would take care of things’, or ‘My other child will look after this one’.
I knew it would not, and, they often do not.
In the ‘Wish-list’ section of the Action For Autism (AFA) journal Autism Network I started inserting: ‘House or large apartment to set up a group home for adults with autism’.
Alas that wish remained just that: an item on a wish-list. But it got parents thinking more practically of the future. Group home? Cooperative society? Ashram? After several iterations over a decade we finally got the land where Ananda now stands, in a serene, unpolluted, rural location.
Physically the residential apartment at Ananda is modelled on the traditional homes of the large families of our childhoods. It has many bedrooms with attached baths, and balconies. There is a central open kitchen with an adjacent large living room and dining area. Everyone eats here and not at a canteen, as this is a home. And spend a lot of their indoor-time here when they are not at work. A five-minute leisurely walk gets one to the vocational centre where residents of Ananda, as well as folks from outside, work during the day. In the near future, some of our residents will go out to work at companies and businesses outside Ananda. There are open grounds for walks, games, and general loafing around. Some of the vocational work takes place in the vegetable patches and elsewhere on the grounds. During the winter, lunch or tea is sometimes laid outdoors to soak up the wonderful winter sun.
The effort is to make Ananda into the kind of home you and I would want to live in. Our neurodivergent and neurotypical people live busy interdependent lives, working at the vocational centre, doing chores around the house and grounds, playing volleyball and cycling and relaxing indoors or out, depending on the weather. And music and dancing. Ananda dances a lot and finds every reason to have a celebration. There are treks and picnics in the neighbourhood, and outings into town – to eat out, take in a movie, or other social activities. Once a year there is an outstation trip.
The pandemic of course greatly impacted this rhythm of life at Ananda.
The lockdown brought everything to a screeching halt. Suddenly all travel outside stopped. Visits by family members were curtailed. Picnics and treks came to an end. Even the purchase of goodies got restricted. Life as Ananda knew it changed overnight. It was important to address this transition to a new and what seemed like an uncertain life with clarity and urgency. To not just address the changes, but also explain the why.
The team talked to everyone about COVID-19. Clear calm explanations prepared residents for life ahead. They learnt about Covid, how it can make people very sick, but if people were careful and took precautions, they could all be safe. Strange new practices came into existence. All newly purchased groceries, edibles, household items were sanitised and left outdoors for several hours. The milk container was taken outside the apartment to collect the milk from the milkman. They learnt safety protocols. Wash hands to the count of 20 especially before and after every meal, sanitise hands often, not touch faces, remove shoes when entering the apartment.
Everything was presented, learnt, and internalised through clear visuals – power-points and drawings, schedules and calendars. The matter-of-fact presentation of information (devoid of hysteria and doomsday predictions), and the predictability it provided, kept anxiety down and helped them deal with the unprecedented changes. Consistency of practice helped the learning of important new routines.
Some parents were expectedly devastated that they could not take their children to their homes. After several months, as things started opening up, families resumed occasional brief visits. But they had to meet in the vocational building. Another new experience. Clear explanations backed up with visuals and social stories concretised and made the situation comprehensible. As the country started gingerly opening up, we decided to restart the treks and picnics. In order to do so, our residents would have to wear masks. The team set about preparing and practicing with them for this new ritual. Soon masks were staying on for extended periods of time.
With the pandemic easing, in early March 2021, the Ananda gang made a fun and invigorating three-day visit to the Pink City which included a lot of music and dancing. Of course! And masking. Each one of them was masked through the trip.
At the moment, we are exploring getting everyone at Ananda vaccinated. Once we work that out there will be discussions with visuals and social stories to prepare our residents for the shot. So that when it happens there is no anxiety and fear of the vax. I cannot imagine how we would have aced this crazy Covid period without our trusty structures and visual strategies.
The autism community owes so much to autism pioneer Eric Schopler!
These months of isolation lent itself to consistency and practice that brought equilibrium and greater independence in many areas. Resulting in happier individuals. Testimony to the value of visuals and structure for autistic individuals, something that is still not as widely understood. Not just for the pandemic, but for life and living. Sadly, the trend still is to not provide these essential assistive supports that help them function. To either say they can’t do it, or use restrictive practices and force compliance. In a residential setting where autistic people will live their lives out after their parents are gone, use of control and force on a vulnerable population can set dangerous precedents of violation of rights.
Ananda is the first of its kind. Our philosophy is unique and we are creating our own template. We are working on fine-tuning and documenting to ensure sustainability as well as a model for replication. We often have to explain to parents why we do things the way we do. Like all of us, parents come with the biases that society has about disability. Often it takes them time to understand our perspective. And it always feels wonderful when they get it. It feels like another small battle won for the rights of our people.
Neeraj started staying at Ananda for longer stretches from the summer of 2020. Soon, it was clear that he preferred staying there. Each time he visited me, on his return to Ananda he happily remained masked for five days. Now that he has moved into Ananda permanently, he visits ‘Mama’s home’ sometimes. But after a day or two he is ready to go back to ‘Neeraj’s home,’ Ananda. Couple of days back, another parent I was chatting with shared the same sentiment about her daughter. Happy to go and visit mum, but raring to return to Ananda after a day’s stay.
That gives us immense joy and tells us that we are getting something right!
The first apartment building called ‘Ambar’ is almost fully occupied, and we are already in plans to construct, the abating pandemic permitting, a second apartment that will house another large busy happy family. Ananda never closes through the year. This is home for the people who live here. Homes do not close for summer, winter or Dussehra holidays. Sometimes when they visit their parents, that is what they do: they visit their parents’ home. Then they return to their ‘own home’. Ananda is a positive, supportive and happy home where our residents ‘want’ to stay. As one young man shared: “Hamey yahan zyada achha lagta hai. Yahan hamey sab samajhtey hai”. (I like it here more. Here, everyone understands me). And as Neeraj never fails to tell me: “Like Ananda”. I intensely miss having Neeraj home with me. But watching his delight in his life at his home at Ananda gives me immense happiness and more than makes up for my empty nest.
For individuals with disabilities and especially autism, living in a world that does not understand them, Ananda is not just a home, it is a haven.
Merry Barua is founder director Action for Autism. Her journey into the realm of autism began with her son, Neeraj. What started as a mother’s passion to make people aware and understand autism has today become a national movement. Her activism has made her a champion of autism rights in India, national policy and now assisted living for adults with developmental disabilities.
Cover image: Tejaswini Kadam
Story images: Author
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How heart warming it sounds “Ananda”, a perfect home for God’s beautiful children. Salute to the mother who set up this home for the many Neeraj’s whose parents are so clueless and helpless about their futures. God bless always.
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There couldn’t be greater sensitivity to human rights practiced in the time of Covid than what Ananda has shown. Congratulations Merry to you and your dedicated team! So humbling!
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Mary, you are amazing. Although I have known you my whole life, it’s so powerful to read about your journey. I am so moved by how your love for Neeraj and commitment to mothering have turned into this tremendous movement, with so much of benefit to so many. I am sure it is not without sacrifice and challenge, but what an incredibly purposeful and meaningful journey 💜
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