Candid with Ms. Aparna Das – ARUNIMA: A Project for Adults with Autism
Candid with Ms. Aparna Das – ARUNIMA: A Project for Adults with Autism
We are back in our latest Wall of Fame series featuring Ms. Aparna Das, Director of ARUNIMA: A Project for Adults with Autism. Ms. Aparna Das is a loving sister with a far-sighted vision to make a better place for adults with Autism in India.
Q. Share with us your journey of establishing “Project Arunima”?
It was around 2005 when my sister Arunima (Runi) was 25 that I really started worrying about her future. While she stayed with family, we were not going to be around forever. What made it especially worrying was the fact that she was so attached to me, that she had started waiting for me all day, while I was at work, unwilling to do anything if I was not at home. She seemed to be sinking into a depressive state, and it was heartbreaking to see her this way.
Added to this was the knowledge that I would not be around forever – no one is! What would happen to her when I was no longer around? There had to be another place, other people, with whom she could connect and form bonds with. And so, began my family’s search for a place that would answer the dreaded question – “what after us”?
If the thought of Runi’s life after us was worrying, what we came across in our search was frightening! There was no way we were going to send her into that sort of existence, where people lived sans dignity, decency, or safety.
Reflecting on these experiences, we realized that it had to be those who cared for Runi, and believed in her right to a dignified and stimulating life, who would have to “be the change we wanted to see”. And thus, the seed was sown, 11 years ago. It took time to plan what we wanted to see and set up, and eventually, a whole year later, Project Arunima was born.
Q. What is a typical day at “Arunima”?
We will celebrate 10 years on the 2nd of April, 2021, and here is what a typical day at Arunima looks like. Our friends (yes that’s what our residents and day trainees are called) wake up between 6-7 and start with a dose of good health – milk and almonds. After spending a little time together, everyone gets ready in time for breakfast. We are off to the training center on the Arunima bus at 9:30. Morning meetings, important announcements, are followed by yoga and exercises. A variety of different responsibilities and activities create an interesting buzz here! Someone works at the office, while the cooking team whips up delicious meals or snacks! Another group goes shopping while some others hone their artistic abilities.
There’s work to be done and hand-crafted items to be made for Arukriti, our shop. Communication sessions are important skill-building times, be it social skills or general knowledge. Different groups participate in varied activities at different times, and before we realize it, it is already time to go back to the residence for lunch!
Our friends, rest for a while and wake up for tea and snacks. Everyone completes their household chores before leaving for evening games or a walk. Once we return, we spend time together, either singing, or talking, or watching TV. A bath before dinner, some free time, and then all are off to bed.
Picture: Fun at the pool and art sessions at Arunima
Q. Who is eligible for the “Assisted Living Centre”?
Project Arunima is a program for Adults, and its aim, or vision, is clear: To enable adults who are differently-abled to live a life of dignity, and maximum independence possible. People over the age of 18 are enrolled in the program. We are acutely aware of the fact that we are working with adults, not children, and all our interactions need to be age-appropriate.
Q. What are some of the life skill training programs offered?
Life skills are the most important ones to learn or improve. Personal care and grooming, caring for one’s own space and belongings, learning to recognize and express one’s needs-all of these are essential to independence. People move on to learning how to shop independently, handle money, job skills such as writing a resume or participating in an interview. The list is endless because learning never ends.
The plan is developed organically because each individual is different. Something we keep reminding ourselves about and want to tell others too is that we are not trying to “fix” our friends, or make them “like us”. Our goal is to bring each person to the level of “happy independence” possible because that is a human right. They are not the only ones who have to learn the ways of the “neurotypical” world. The world has to learn their ways too, and both respect and accept them, to achieve true inclusion.
Q. How do you prepare them to avail employment in the community?
Availing employment is a goal for many, though not all. As mentioned earlier, it is a two-way street, where the community learns about people who are differently-abled, and we teach our friends the skills needed to do a job well, including, of course, very important social skills.
Sometimes jobs need to be customized to be a good fit, which makes job readiness a work in progress. We have one member of Arunima who has joined a premier staffing and recruitment agency. She marks our first foray into mainstream employment, and we are so proud of her achievements. She has learned much along the way, taught us, as well as the company she works with.
Accommodations and adjustments the company makes for her are not treated as a big deal by them, and she gives her best too. Like I said, a two-way street.
Picture: A day of bird watching with experts and cooking classes at ARUNIMA
Q. What was the biggest challenge for you in setting up “Project Arunima”?
10 years is a long time, but it does seem like we inaugurated Arunima just yesterday! Yes, there have been many challenges along the way, but we would not forgo any of the difficulties, because of the valuable lessons they taught us. We are in a better place because of our struggles. Issues like funding and staffing are relentless in a sense, and we face them even today.
The challenge here is to make the service and it’s quality self-sustaining so that the generations to come don’t struggle the way we have. The challenge that has been somewhat scarring is the lack of acceptance from the community. I remember days when neighbors gathered outside our gate and asked us to leave, or when someone complained to the police when one of our friends was having a hard day. The scars hold no bitterness but are an important reminder of how important awareness-raising is. Ms. Aparna Das,
The journey with this teacher called “autism” has been one of constant learning. It started with Runi and has evolved into Project Arunima. Runi and Project Arunima are amazing teachers! Looking back, I would say that there were times when we were over our heads with the challenges autism brought, and often thought that the light at the end of the tunnel had somehow been switched off! Runi was diagnosed in an era when people understood very little about the condition.
However, I realize now that Runi’s journey so far, and the establishment of Project Arunima as a result of this, proves – as her favorite Shahrukh Khan would say – “agar kisi cheez ko dil say chaho, toh poori kayanat use tumse milaane ki koshish mein lag jaati hai.” Ms. Aparna Das,
Click on the link to learn more about Project ARUNIMA http://www.projectarunima.org/
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