“It Always Seems Impossible Until It’s Done!” – Nelson Mandela
Keystone Moldova English and Keystone Moldova Romanian
Keystone Human Services (KHS) is a non-profit organization that is a part of a global movement to provide support and expertise to people with disabilities.
By Chitra Paul, advocate, co-editor of Talking Fingers, SRV Leader, Tarun’s mother
And Tarun Paul Mathew, student, writer, thinker, self-advocate, and co-author of the new book Talking Fingers and Chitra’s son.
Editor’s Note: In 2022, Padma Jyoti and Chitra Paul co-edited a groundbreaking book highlighting the voices of non-speaking autistic people from across India and close-by countries. One of the authors featured in Talking Fingers was Mr. Tarun Mathew, Chitra’s son. Both of these interesting and also inspiring people have contributed to this article.
Becoming a parent is an emotional journey that one grows and evolves into. At the start of this journey and for quite a long time your child’s identity is tagged to your own. Then gradually a role reversal occurs. As a parent you look forward to that day when you are recognised as your child’s parent rather than the other way round.
When you are parent to a child with a disability, so often the identities of both your child and yours are intricately intertwined, wherein the child’s identity is limited to the connect with you. Society tends to view you with sympathy and displays a patronizing attitude toward the disabled person.
However, many disabled individuals have broken through these attitudinal chains and created their own powerful identities independent of those of their parents. Here the roles don’t just get reversed, but go way beyond too, as independent people with individual contributions.
Being a parent to a non-speaking autistic individual has not always been the most positive of experiences. At every point on this journey with our son, Tarun, we have had to stand up to break down the attitudinal walls. In some cases, we have succeeded, while in others we were not able to do so. Over the years, gradually a role reversal has been taking place where we are recognized as Tarun’s parents based on his contributions as a young autistic activist along with his many other attributes and abilities.
This writing is an attempt to share our experiences of two such events that took place in the year 2023. I share with immense pride that this article is an exercise in co-authoring these experiences with my son, Tarun. My observations from the parent angle are shared along with his lived experience.
Tarun has been recognized as an advocate for his community of non-speaking autistics here in India for the past few years. One such event was the Autism Conclave organized by the National Trust in New Delhi. Tarun was invited as a Purple Ambassador to participate as a resource person in a panel discussion as part of this one-day event on 30 May. As his parents, we were overwhelmed when he received the invite, and that we were to accompany only to provide him the support he required. A highlight was that at every step, he was the person making the decisions and our role was secondary. He was very diligent and purposeful about preparing in advance. Something else that really made us proud was that he was very clear about including the viewpoints of his co-authors from the book, Talking Fingers. The topic of the panel discussion he was to participate in was “Breaking the maze of Autism for Parents.” He created his presentation in a single day making it amply clear to us that this opportunity was very important to him. The topics in his presentation ranged from what he wanted people to understand about autism and autistic people to his expectations from neurotypical people and his messages to parents, professionals, and society at large. Though typing out his thoughts was an extremely exhausting process for him, he pushed a lot of boundaries to complete his presentation. Although the panel was scheduled around his lunch time, he yet again surprised us by typing out his message to the audience live before stepping off the stage because of sensory overload and hunger. I am sharing his message verbatim here – “Slowly changing communication connections gives freedom to us autistics. Communication is not just speaking.”
Though he was ten days shy of turning eighteen, Tarun managed to establish his identity independent of his parents, fitting right into the role of a self-advocate.
In November 2023, Tarun was invited to participate in another panel discussion that was part of the India Inclusion Summit. The topic of this discussion was about inclusive literature and its role in changing the narrative about disability. This was a much bigger forum, and this too warmed our hearts as parents. Yet again he claimed his rightful space under the sun with elan. Yet again he showed how seriously he took his role of being an advocate for his tribe of non-speaking autistics in the manner in which he prepared his responses for the event. However, the real highlight was his calm and composed demeanour throughout the event as well as the way he responded to audience questions on stage. As his parents we felt very proud that he was growing into a true humanitarian when he responded to a question from the audience as shared below.
“Why do we feel pain?”
Tarun’s response was – “Because we are human.”
Until a few years ago, we were the ones helping Tarun chart his path. But now the roles are completely reversed, and he is charting his own way whilst still leaning on us for support whenever required; the difference is that he is the decision maker in his life, the driver of his own life journey.
Tarun shares his experience as a panelist at the National Trust Autism Conclave:
“Just made me become connected wider, having bigger audience, hopefully reach does get larger. I became aware of how life offers very few opportunities, forcing you time and again to respect and value the tiny ones always because, only they make that opening a doorway to long-lasting change. I felt greatly happy that I was included for the panel discussion for it is indeed rather rare to invite a non-speaking autistic as a participant to share their views. That I could represent my community and share copies of the book I co-authored, Talking Fingers, with important officials also gave me lot of happiness. For me the flow came from listening to other speakers, some of whom did have very outdated ideas about autism. One that really managed to irk me was about the need to curb stimming by autistic people completely because it comes in the way of learning. I could type out the response – “People hear us because now we can’t be unheard anymore as our voices are growing ever louder. For autistics to live means repetitively stim, that is our human right.” It felt very good to share my thoughts and be listened to by the neurotypical experts in the presence of my community of supporters both autistics and non-autistics.
I was also excited to meet my fellow authors and non-speaking autistics, Tarun Verma and Vanshita. Got to also meet and click photos with Rakshita, Merry, and Nidhi who supported me immensely throughout. Could also meet other autistics who attended. Some things sure made me struggle too like rather bad schedule time adherence, very disturbing sensorially but having the freedom to take breaks helped a lot. It was lovely being part of the conclave learned so much there.”
Tarun on his experience as a panelist at India Inclusion Summit 2023:
Nothing to beat the experience I had of sharing a platform with author Anita Nair. The topic of discussion was changing the disability narrative through inclusive literature. One that makes only perfect discussion point for changing how autistics are viewed in India. The experience was more informative yet sensory wise extremely tiring. My previous experiences gave lot of insights that helped me to contribute more this time. I was particularly happy that I could respond really quickly and precisely given audience questions. The highlight was being able to sign my name on the India Inclusion Summit 2023 painting.
I am sharing my thoughts that I had presented during the panel discussion about whether children’s books featuring the disabled will help change society:
“The change in society has to begin from children to ensure that it sustains. For large trees to grow and for the forest to thrive, only possible if enough work has been put into the ground. With children’s books featuring disabled, if it happens it makes the ground gets ready for change. That books help create and shape perspectives is common knowledge.”