My first thoughts for Kind Theory  in the form of this article on lived experiences with ableism.Little drops such as this will hopefully add up to be a mighty ocean against this form of discrimination.I look forward  to reading and writing about this topic more.

 

The original article can be found here – https://kindtheory.org/blog/lived-experience-with-ableism/

 

Non speakers are such a major target group for everything related to ableism that it is hard to know where to even begin. Right at the top of the list there is speech itself. For all the breadth and depth of the words we type, sometimes with excruciating effort, we will always be judged by those simple words we are not able to speak. The spectrum of ableists is vast – in this case it goes from those that outright reject our way of communication to those with good intentions that still cannot be patient to wait for us to finish a typed response to a question they asked to loved ones that, otherwise accepting but secretly wish you can talk.

 

The next thing that springs to mind is listening. I love my stims but my feeling is that to those that are talking to me it can look like i am not paying attention. What is essential to keep us in the conversation is often held onto as proof that we are not listening. That is ableism at its core, the expectation that listening has to be a certain way. And that any form of listening that is not looking in the eye and nodding your head, leave alone not even being in the room, is not listening at all.

 

Finally, the world of medicine deserves multiple pages here but I will summarize briefly here. Far too many of our medical and mental health needs are buried under the name of autism. In that sense autism is the biggest umbrella of ableism – so much of what we can or cannot do is merely interpreted through this label next to our name and not by our individual abilities. It is the fight of our lifetimes.

Originally written for kind theory here – https://kindtheory.org/blog/lived-experience-with-ableism/

Our mindset about success and failures is mostly based on the constant starts and stops our lives have had from the beginning. For every step forward, there are often three or four steps back. It makes moving forward really difficult. It is in this backdrop that we need to take a fresh look at how success should be measured.

 

Most days, just being able to get to the playing field should be considered success in our case. We need to fight our own bodies. We need to overcome the structures that have no understanding of us and hence inherently designed to fail us. We have to have the grace to accept love and yet, in the same situation, have the courage to push back against any support that is packaged as help and not empowerment.

 

It is not exciting to say that managing our normal day to day is in itself a success and should be celebrated as such. It also begs the fundamental question, who gets to decide who is successful or not? Who writes these rules? 

 

There is no question that most of our tribe would go on to do things never imagined humanly possible before. But we would be losing the plot if we lose sight of what need to overcome on a daily basis and why that should find a prominent place in any debate around success.

 

Originally written for kind theory here – https://kindtheory.org/blog/our-mindset-about-success-and-failures/

Most people that I have met are inherently kind. People that would not even hurt a fly intentionally. People that always make me feel welcomed and loved. People that go out of their way to make me feel safe. People that make me laugh and are there to comfort me when I cry.

 

However, I have always felt the need to be valued for who I am. I have always felt the need to be part of conversations and not just the subject of. I have always felt the need to be an organic part of a group not someone the group goes out of the way to accommodate. I have always felt that I needed someone to be there with me and not for me.

 

That is where kindness has fallen short in my life. I have always felt like a receiver and not as a participant. I have always felt like someone is doing me a favor by being kind to me and that they see no reciprocal value. I have always felt that I am just an outlier in their lives.

 

I am not asking the kind people to be more kind. Nor am I ungrateful for their kindness that makes me and the world better. I am just asking everyone that is kind to reflect on how your kindness makes the other person feel. And can that change to make both parties feel the best they can. This will be one of my goals with this kind force – to make kindness equal.

 

Originally written for kind theory here – https://kindtheory.org/blog/my-perspectives-on-kindness/

Japan is a lovely place. For a relatively small country geographically, it packs a punch at all levels from the majestic mountains and the bountiful nature to the technological and engineering innovations that make daily living so much easier to its kind and good natured population that is so respectful and courteous to each other. I have had such a positive experience visiting the country for a relatively short period of two weeks.

 

One of the fascinating things for me to observe is how orderly most things are. There is hardly anything out of turn, not a step out of line in a queue at the grocery store, not a movement out of line in the train and barely an extra sound anywhere. This seems to be the social order that everyone is comfortable with or have gotten used to, including some small children.

 

This left me reflecting on the state of those like me, those with unruly bodies that do not play to the order one’s own mind has, leave alone the society. I struggled in public places, particularly in trains, to conform. As hard as I tried, I could notice that my body made some cringe and a few outrightly annoyed. I wondered if they would have seen anyone stim or know how important stimming is for autistic people to process the sensory overload that some of the advancements, technological or otherwise, bring. 

 

I really longed to see a few others like me on the train or in other public places. I wanted to see how they managed their unruly and unreliable bodies in public. And how society reacted to that. Maybe I did see them but did not notice? Or maybe they are not out much in public to maintain the social order? Questions I will continue to ponder as we get ready to leave.

 

Originally written for kind theory here 

https://kindtheory.org/blog/being-autistic-in-japan/ after our trip to Japan in summer of 2023

Life in India is mostly expected to function without many of the privileges that I take for granted in the U.S. The contrast is so stark and striking. From my observations during this trip, it has become more clear to me that the ones that are not privileged are just focused on survival in the most basic sense. 

 

The stories of many that we depend on a daily basis is instructive, whether it is our housekeeper fighting against circumstances that the system here has thrown at her, like getting married off at 17 and now working multiple jobs at odd hours to raise 2 young kids around my age as a single mother or our driver that puts in long hours to send his daughter to college. I recently endured a power failure that was only mildly inconvenient when I learnt that several roads and even some homes were flooded from the rain that caused the power outage. The scale of these seems to be very different from the U.S., even if it is just my casual observation just from the comfort of my air conditioned car.

 

What was most challenging to process however is the plight of non speakers like me. I had the privilege of meeting a young non speaker, only slightly older than me. I saw the twinkle in his eyes of someone that is very wise, I saw the frustration and pain of not being to share his gifts and most concerningly I saw that the family had no support structure to plan and execute something that could help. This is a family that is aware, open and has access to resources. There are several other families that may not know what hit them or where to even begin. This is against a societal backdrop that is a far cry from acceptance, judging from the stares I got on flights and airports.

 

I look forward to learning more on this trip and contributing in a meaningful way.

 

Originally written for kind theory here – https://kindtheory.org/blog/life-in-india/ after our trip to India in summer of 2023

Travel always provides perspective about our limitations and the associated lies we tell ourselves. This is particularly true for those like me that continue to be defined by our limitations. As we embarked on an ambitious travel project that involved flights and transits that literally took us around the world via the Pacific and the Atlantic oceans, the stage was set to challenge assumptions about ourselves and the world.

The likelihood of finding a supporting crew was increased when we decided to share our story proactively. Same with co passengers as well. Angry glances would become supporting nods. Light dysregulation would  move a crew member to bring a snack. General apathy and indifference would become genuine curiosity to learn our lives. Judgment would give way to appreciation for fighting the odds. Fear and apprehension about travel would be positively upstaged by a celebration of humanity. 

The airports were harder to control. We had some really seamless experiences where I felt supported and understood by the airport staff and several other challenging experiences with long avoidable delays as well as rough handling of my wheelchair or my body during security checks. It gave me a front row seat to how far we need to go in being able to understand all humans.

Overall the trip was a really positive experience. I am grateful for what I was able to overcome with the support of so many while also gaining a deeper appreciation for how far my body needs to go to meet the world where it is. If one thing was clear it is that we are unlikely to meet halfway soon.

Originally written for kind theory here – https://kindtheory.org/blog/traveling-the-world-as-an-autistic/ after our travel to multiple countries during the summer of 2023

I had the opportunity to meet Mr. TMN Deepak who is a leading disability rights activist here in Chennai. It was so kind of him to pay me a visit amidst his extremely busy life. In my sheltered life with aspirations of activism, it was very grounding to hear from someone that has dedicated a lot of his life to create space for this issue to be discussed in the mainstream. It was a healthy dose of reality to hear about the struggles to create even small incremental changes.

 

The life of a person with a disability is extremely challenging in India. It appears that the basic physical accessibility concerns in public places are still not widely resolved. We might be a long way away from universal access to alternate communication tools for non speakers like me. There seem to be very few voices in this area.

 

We had a good conversation on how it is difficult to move the disability movement from a charity mode to a full fledged rights based movement given some of the historical context around how disability is looked at. It was also eye opening to hear how different disability groups compete for the limited resources that are available without much coordination. Finally it was instructive to hear how some of the small wins are celebrated as a victory for the individual thereby losing the focus and an opportunity to create awareness on the challenges they had to overcome. This lack of awareness and education is the biggest impediment to moving this to a right based movement.

 

While the road ahead for a young disability activist can be daunting, I drew a lot of strength and solidarity from this conversation and what Mr. Deepak had to overcome. I am now more inspired to meet more such activists and learn more.

 

Originally written for kind theory here –

https://kindtheory.org/blog/disability-movement-in-india/ after discussion on disability rights during our trip to India in the summer of 2023

My love for food is a blessing and a curse. I love all types of food that are meant for the soul. The love is how my palate morphs into a palette of colors and flavors. They make my fancy dreams come true. Hope fills my heart as my imagination soars into the universe of food possibilities. 

 

Privilege becomes a treasured friend as access to a rich variety of food is always within reach. Openness to different foods and cultures is a gift bestowed by the family that I will continue to wear as my proudest inheritance.

 

The dream becomes a nightmare as love turns into greed. The greed combines with the mind body disconnect to create the perfect storm that the kitchen pantry or the refrigerator has no chance against. The love for food turns into a crusade of self destruction. As the stomach screams to stop, the hands and mouth might very well be on a different planet. Life is challenging when your love becomes treacherous.

 

The sun will rise. Life will take a different turn. The association of food and love will live happily in harmony forever after.

 

Originally written for kind theory here – https://kindtheory.org/blog/traveling-the-world-as-an-autistic-2/

Life in a multigenerational household is so fascinating to experience. There is always an element of intrigue to the different interactions as long as learning about the family is the goal. Different educational backgrounds, different life experiences and different forms of communication make for perfectly imperfect learning opportunities that love and curiosity help convert into lifelong wisdom. 

The great grandparents always go for the most coveted price, a cure for autism. The time tested tool they have at their disposal is an application to one or many gods. When they are not telling me which temple to visit, they are telling me about the awesomeness of their gods. They are certain that I can be cured. When they talk about their lives and how much of it is centered around temples and religion, I understand that their ideas for my cure are just an expression of their love for me and their wishes for me to have a fulfilling life. I make peace with that and instead lean into their fascinating life stories to learn about who they are and what they have overcome. They always look out for me, in spite of their own frail bodies and age related loss of function.

The grandparents are a vibrant group. They are more spread out in age and understand my condition with various levels of depth. They run around to feed me and this becomes their primary objective. They also are willing to stretch their worldviews to help me find a place in that. They are loving and kind even if they do not always know how to engage me. They all try extremely hard to show up for me. 

The uncles and aunts and cousins have more exposure than any other group in the family. They have traveled and been to good schools and are worldly wise. Access to information about autism is readily available to them and they love following my work as well. We have made songs and videos together. Most of them attempt to talk to me in an age appropriate way and in general understand my evolution quite well.

We are rarely under the same roof together but when we do on our India trips it is always a happy chaotic experience- the chaos mainly from everyone telling each other how to deal with me.

*Originally written for kind theory here – https://kindtheory.org/blog/life-in-a-multigenerational-household/

There is nothing like painting for being in the moment. Here is a take on being present with painting as a metaphor.

 

Painting for a Twist

 

Today I imagine colors of tomorrow

Today I make the shades of yesterday

What if the colors bring their own shades?

 

Maybe you don’t know the palette yet

Maybe you are clouded by the shades

How does vibrancy look on you?

 

We can try bringing the brushes

We can try enlarging the canvas

Will we insist on the colors?

 

Today is the day of painting

Today is when the art comes together

Look, today is all you got.

 

Originally written for kind theory here – https://kindtheory.org/blog/being-in-the-moment/

The life of Dr. B.R.Ambedkar (a prominent Indian leader, jurist, economist, and social reformer) was a pursuit of social justice. He has instilled a sense of hope in me for our tribe’s injustice that changes are possible. Here is my take on him and our nonspeakers revolution.

Ambedkar was a remarkable man. His work resonates deeply with me now that I am part of a marginalized community myself. He was unflinching in his belief that those on the lower end of the social ladder needed empowerment and support. He was uncompromising in his actions that led to enshrining of these rights in the Indian constitution. His positions were not always popular and India also had to deal with several competing priorities in terms of getting its independence from the British. The fact that Ambedkar helped architect such a forward looking framework, that has stood the test of time, is a huge testament to who he was and his ability to work with others on lasting social change.

The non-speaker revolution is at its infancy. There are so many deeply entrenched beliefs on who we are and heavy skepticism on what we can do. The way the society is designed around us, it is in the best interest of many, but us, that we remain this way. But there are some incredible leaders emerging in this movement that are already driving meaningful change. There is a lot to learn from turning the pages of history and learning from the likes of Ambedkar about creating lasting social reform that values everyone equally and empowers participation and contributions, making the world better for all.

May the legacy of leaders like Ambedkar continue to inspire social movements for generations to come.

*Originally written for kind theory here – https://kindtheory.org/blog/ambedkar/

I love movement in general. Not in the traditional sense but in a relative sense of the term. For example, moving my hands in front of my eyes is considered as movement in my classification. I find a lot of joy in movement. It grounds me to experience other joys of life. It helps me see the world in unique and different ways. 

Many times, light might seem mostly dark when I am not moving. Images and perceptions become clearer and sharper on the move. I sometimes experience joyful hallucinations with a spectacular array of lights. Other times, rapidly lose focus of objects that were clear moments ago. 

My body freezes with loud sounds or when I have crippling anxiety about a task that needs me to do something uncomfortable. I struggle to initiate movement when I freeze and need love, patience and very intentional motor coaching to get out of it.

Put simply, my movement journey through life looks less like that of a perfect sprinter but more like the mighty pursuit of a turtle that does not want to get hit by a car while crossing the road, may not be linear but is the essential survival mechanism.

*Originally written for kind theory here – https://kindtheory.org/blog/ambedkar-2/

(Swarit won the Neurodivergent 𝗬𝗼𝘂𝗻𝗴 𝗔𝗰𝗵𝗶𝗲𝘃𝗲𝗿 𝗼𝗳 𝘁𝗵𝗲 𝘆𝗲𝗮𝗿 award in London on September 28 2023, for overcoming extreme odds to create a meaningful difference.𝗖𝗲𝗹𝗲𝗯𝗿𝗮𝘁𝗶𝗻𝗴 𝗡𝗲𝘂𝗿𝗼𝗱𝗶𝘃𝗲𝗿𝘀𝗶𝘁𝘆 𝗔𝘄𝗮𝗿𝗱𝘀 are the largest awards in the world that focus solely on the neurodiversity community and their allies and receive nominations from across the globe in multiple categories. Swarit was only one of 2 nonspeaker finalists across all categories.)

 

I often have wondered about nonspeakers having lives that are somehow perceived as meaningful and worthy. I have just had minor dreams of what that recognition would look like. Who would be there, what would be said, how would it all unfold.

 

I thought that day was way far out for me personally but was hoping to participate in something that was a celebration of pushing the limits. I witnessed an incredible batch of my seniors graduating high school, the first of a kind. I read about Elizabeth Bonker and her commencement speech that put a nonspeaker on a world stage. And other,very worthy accomplishments.

 

What I have done seems insignificant in comparison. And yet the dream team that are my parents and the reservoir of love and acceptance that are the people that read my posts have catapulted me into the recipient of an award that had several other incredible achievers being nominated. The nomination video made me dizzy with inspiration.

 

The night was beyond my wildest dreams and the collective achievements of everyone that was celebrated was as bright as the sun that was setting at that time and the other stars that were lighting up the night sky. My family and I felt so much love in a foreign country that the people in that room felt like those we had known for a long time. The connection was instantaneous.

 

It was very meaningful for me to follow Elizabeth Bonker as an award recipient on that night. I have a long way to go in body, mind and spirit but I am grateful for the opportunities to talk about our tribe to the world. That cannot and does not need to wait. More power to other voices that stretch limits of possibilities.

 

Originally written for kind theory here – https://kindtheory.org/blog/august-neurodivergent-young-achiever-award/

My mind prepares me for lots of challenges. I keep visualizing what i would do in certain situations and that lets me handle those better when they come

 

One of those challenges I have had is my fear of heights. In my younger years, this would be a constant around late spring where I would almost forget how to climb up to go on the swing and would relearn from scratch. My dad would patiently coach me every year and I would become proficient by the end of summer. And then this cycle would repeat again next year. And on for a few years.

 

This moved from the playground to the stairs. I would be terrified to climb a new set of stairs. We have visited friends where we would come back from their garage because I would refuse to climb up in spite of all the patient coaching and support. Somehow my perception of depth constantly needed recalibration.I would overcome only for those cycles to repeat like with the playground.

 

This was still occurring when we got to Japan. My fight with the staircase started as soon as we entered the house we were staying in. It took me a while to climb a relatively small set of stairs. The anxiety was debilitating. And since I had asked to explore the culture and nature, I had apparently signed up for unlimited climbing practice through the many shrines and mountains that were in our list to visit.

 

As we started our first sightseeing visit, I was more inclined to seek refuge in a wheelchair we had rented to minimize my sensory overload. But as we started hitting spots without easy wheelchair navigability I was forced to venture out and try. I of course had a full cheerleading squad that was actively encouraging and supporting. I just decided to lean on them and take one step at a time. And once we moved into nature and wilderness I took inspiration from what it had to overcome to try a little harder. Suddenly we were zipping through steps everywhere we went. Suddenly we were zipping through steps everywhere we went. By the end of the trip, I was actively seeking stairs to climb.

I am not yet fully convinced if I have put this fear to rest. But the japan trip ought to be a huge turning point.

 

Originally written for kind theory here – https://kindtheory.org/blog/conquering-my-fears/

Grateful for every act of love 

That touches my heart

Grateful for every minute spent

Listening to my unspoken words

Grateful for every piece of music

That uplifts my spirit

Grateful for every bite of food

That nourishes my soul

Grateful for every bit of suffering

That make me wise

Grateful for every second of health

That helps me appreciate healing

Grateful for the memories

That have enriched my life

Grateful for the universe

For this magnificent force around me

Grateful for this life

For what is and will always be.

 

*Originally written for kind theory here – https://kindtheory.org/blog/grateful-heart/ around thanksgiving of 2023

A common stereotype of my tribe is that many of us are music wizards and can somehow magically pick up a musical instrument and play. I can attest from learning piano for many years that it is definitely not the case. This is an area where my mind and body are often on completely opposite poles. I have a lot of music in me, thanks to years of listening to music from all around the world. Yet the motor challenges have deter me from making significant progress.

 

Presuming competence and coaching for motor skills should be the guiding principle of any music teaching involving our tribe. I started learning piano from a genuinely lovely teacher that simply didn’t understand me or how I learnt. Every session ended up being a struggle and I had to give my everything to just keep my body together – and was not always successful. I lost motivation to learn.

 

It took a lot of perseverance from my parents and finding the perfect teacher in the last couple of years for me to rekindle my interest in learning and make meaningful progress. Music is not a birthright for all of us nor are we music geniuses. But it is something the really passionate can learn with sincere, sustained and directed effort.       

 

Originally written for kind theory here – https://kindtheory.org/blog/music-learning/

Beginnings let new possibilities sing

Beginning of a poem invites moments of reflection

Beginning of a relationship allows a peek into soul of existence

Beginning of life nurtures a mother’s date with destiny

Beginning of a human endeavor throws potential and limits into a boxing ring

Beginning of a spiritual quest conjures up unlimited answers against unsuspecting questions

Beginning of the universe set the tone for the mother of all expansions

Can the end of this poem be a new beginning of the expansion of hearts and minds.        

 

Originally written for kind theory here – https://kindtheory.org/blog/beginning/ around the beginning of 2024

Looking at the world in a different way helps in our understanding of the keys to the movement of love. Mind looks at ways to possibilities of love always. Love is living in peace and harmony.

 

From a sensory perspective my primary strength is my visual ability. My incredible ability to make sense of the world through pictures helps me look for my way through the chaos. Plenty of options open up like puzzle pieces appearing from nowhere. 

 

The living understanding of what is possible limits us to share our abilities in dimensions that are understood broadly. We will struggle to put some of our abilities into words and experiences that people can more generally understand and relate to. 

 

Our lives ought to be understood mostly as a species that have some unique abilities that we could bring to broader understanding over our lifetimes now that our communication is reaching the levels of sophistication needed to communicate with this world. 

 

Originally written for kind theory here – https://kindtheory.org/blog/benefits-of-being-a-non-speaking-autistic/

Popular notions of fear make us believe that there is something external that needs to be feared. It could be an act of nature or the method of a human or a force of circumstances or a myriad other things. It is usually you versus something more powerful and one that can seem insurmountable.

 

In our case that perpetual enemy lives very much within us. It is a part of us. It is our body, it is very much us. Like a leaky roof that you can never feel safe under, we inhabit a body that is predictably unpredictable. The life of a nonspeaker is a constant battle for survival against one’s own body. Picture that.

 

So what does life without fear look like, when you are in a perennial state of fear? Is that even achievable for us? I like to think, yes. It is a combination of a few approaches that can get us there. First, making the most of our good body days. Use those days to build up our positive balance of accomplishments and good memories. This is critical for both us and our caregivers. Secondly, continue to discover and build confidence in our bodies. Push to learn where it can be trusted and where it can’t.

 

And finally building our template for those bad days. While they can come in different shapes and sizes, it always takes a huge toll on us and our caregivers. Getting through those days needs a ton of patience, resilience and a solid understanding of what is achievable on those days. 

 

Fear can be conquered, even if it is your own body that you are fearing. It takes a bit of planning and effort and a healthy dose of love and goodness on your side.

 

Originally written for kind theory here – https://kindtheory.org/blog/living-without-fear/

I just finished reading this book “Happiness Falls”. The central character is a nonspeaker and I enjoyed reading that a lot. The author, Angie Kim, has done a lot of research and has portrayed the character in an empowering way. Here is a short poem on the book.

 

A nonspeaker’s quest

 

I am moving slowly

The book is dawning on me

A life on lockdown

And the pages losing letters

 

The uniqueness of the story

Embellished by intersectionality 

Of identities, incredulity of loss

And a confluence of factors

 

I laughed and leaned

I despaired and wept

I hoped and shared

I yearned and longed

 

The happiness journey

Via the rollercoaster of life

The destiny of a family

And its ever evolving baselines

 

Can a nonspeaker’s voice be trusted

On the most difficult day of his life

When all his life, he was

Buried under vast swathes of doubt?

 

Is the pursuit of happiness

The most important goal?

Or the futility of these pursuits

The most defining legacy?

 

-Swarit Gopalan

 

P.S. Thank you Angie Kim for this labor of love to our tribe.

 

Originally written for kind theory here – https://kindtheory.org/blog/a-nonspeakers-quest/