Talking about permanent disability, inclusion and a lived experience.

Today’s guest post is by Nupur Jain, a writer who loves books, movies, music and anything related to the art of self-expression. She expresses ideas and opinions through writing, in order to reach out to people to talk about the human condition. She is curious and inventive about new media, and spends her time best when she is around children. Stories and shared laughter find their way into her work of writing fiction and non-fiction for everyone.

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I was looking for jobs after I crashed out of Mumbai and Delhi where I simultaneously worked and studied to make a living in cinema. I didn’t quite know what was wrong with me. All I knew was that my thoughts were racing, my hands were shaking and I was having a difficult time understanding, suddenly, what people were trying to say through their gestures and speech to me.

It was as if I had been lost, somewhere else the whole time, and suddenly landed on earth to find myself having lost everything that had been as precious as my life to me. And I felt that people were behaving rudely with me too, quite rapidly, friendships began disappearing, and I landed home in Jaipur at my mother’s house, bag and baggage, mind and heart needing mending. For the first time in 30 years of my planetary existence, I was fighting to survive. Not even my father’s early demise had brought about this utterly hellish state of being.

In early 2007, I had suffered a major relationship setback. Little did I know that I was in some stupor, walking around the lanes of Mumbai with a head that lost keys, spaced out on computer screens in office and generally had nightmares while daydreaming. I started failing to understand how to carry out logistics at work, or talk to people. I could still initiate a project, carry on with the preparations, but never really get to the action on set. I was an assistant director with a broken mind. I needed to heal and get some training to be on set, yes, but the problem was much larger than I could envisage at that time. For instance, I could not keep earphones in my ears for too long. I flung them on the sofa in the vanity van of an actor and tried to listen to the team chattering away without plugging the earphones in. That didn’t help either. I couldn’t hear properly at all.

Clueless about what was happening to me, I was failing in every department on set except making a call sheet. Writing was helping me live on in my work. But I quit. It was humiliating to be treated badly for things I had no control over. And these were genuinely nice people. But I think they maybe thought that I was just being inefficient. My problem was invisible. And the non-inclusion, real. Sadly, I didn’t have it in me to realize that it was nobody’s fault.  

Cinema left me, in practice and academically. I was hurt and insecure about being able to do anything except writing for a living. I started looking for writing jobs online. Some of them were US based. And the application forms were asking if I had a permanent disability.

My heart sunk, and I stared at the words in refusal. No, I was well before this. Why couldn’t I become healthy again in sometime? I had been diagnosed with depression, but I refused to look at my mental illness, as permanent.

How could there be a permanent shift to a self that was never going to recover, and I would only be able to manage an illness all my life? A doctor I visited seemed to suggest so, by saying I had to be on a pill till I live. I cried my heart out that day. I did not want to be on a permanent pill for my brain to function properly.

I told another doctor, my longest term psychiatrist about what the other doctor had suggested. He told me I could get off the medicine if I wanted. I knew I was right. This was back in 2012. I did not fill in a single form marking myself as permanently depressed. I chose to hunt for jobs in Jaipur where I was going to live for a long time with my mother. None could I say to that I had a condition. Except one.

I was going to be included in a workplace where the founder was compassionate about my illness. At that time, I left the job because I couldn’t cope with myself and my illness. But that was the only place in all of Jaipur that was going to include me in their team despite the disease. 12 years from then, I would now give eye and teeth to get back to that job and work out my health while being employed. Instead, preferred to freelance from home. After a good run, things came crashing down on my freelance career too. Freelancers don’t have inclusion issues. The word doesn’t exist for them, for they are gypsies in a floating market. So there were no mental health caveats to be issued to prospective employers. One had to manage a busy schedule hidden behind the garb of a neuro-typical person, with some problems in communication for sure. I was picking up work from Mumbai, Bangalore but no one knew I was ill. Even I didn’t know I was ill for good lengths of time.

Till the gaps between work life and daily living increased. I felt exploited, shamed, I had anger issues, I was arrogant. And such a fool. I fought my depression, but left jobs one after another. Sometimes, I was scared. I did not know how to maintain my relationships, my communication was bad, my mind and body broken. And I was being gauged by a neuro-typical lens by everyone around me. I HAD to earn money for a living. My neuro-diverse brain was not considered as one when it came to fending for myself. Things were complicated. Also, because I was not ready to admit there was something wrong with me.  

In the midst of all of health, anxiety about wealth and complete depression about how bad I got with my relationships, I got hired thrice by the employer who understood it all. It was a small team that I worked with, non-stop, whenever I did work there. Each time, I wrote a mail in and dropped out after some time, the last time because I had anxiety issues crop up as well. But it felt good to be understood and included. I still regret leaving that job, but my illness got the better of me.

When the mental clouds cleared this year, it became apparent that depression and anxiety were not the primary reason for my dysfunction, it was my behavior and speech (un-patterned) that were the main culprits behind my falling from grace in the first place, it was very late. I had done various things between 2010-2024, but I had no career. The only thing that was permanent about my disability, was writing. It might seem laughable, but I had forgotten I was very poor at interpersonal relationships and forming good bonds with most people around me. I grew more and more isolated.

Now I have perspective. The depression and anxiety and the accompanying pills are gone. Side effects were many. I ate lithium for the longest time and it got so bad that my hands and legs shook all the time I was in bed or lifting something in my hands. My social life was nearing zero not because of my own volition. I was in and out of circulation for different reasons.

The stupor lifted three months back. Health, wealth and relationships went haywire from 2009-2024. I have spent almost 15 years wanting to be included in everything I have wanted to do from time to time. Luckily for me, my mother is rock solid. I have a roof over my head. And I am going to make the most of it. No, I am still not ready to believe I lack something. I want to be included with the shortcomings that exist now, but I believe I will be able to achieve complete success in my life if my temporary disability is understood and supported.

Till then, I fight and try and build, on my own.  

This post is a part of “International Day of Persons with Disability” blog hop hosted by Sakshi Varma – Tripleamommy. #IDPD2024Bloghop.

Access all posts of this blog hop at https://tripleamommy.com/2024/12/02/beyond-barriers-amplifying-voices-for-inclusion-marking-idpd-2024/

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Regards, Sakshi aka tripleamommy
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