Ulgulan Talks! : Interview with Kumar Mahavir
In this eleventh interview of The Sangyan’s ‘Ulgulan Talks!’, an endeavour to voice the issues of the larger public interest of ‘We, the People’, Abhishek (the interviewer) talks with Kumar Mahavir, a young man from Deoghar, Jharkhand (India) primarily regarding the impact of climate change on his life from the vantage point of his disability.
Mahavir is a graduate (2017) in Political Science and Government from Indira Gandhi National Open University and a postgraduate (2020) in Arts, Urban Policy and Governance from Tata Institute of Social Sciences. Mahavir is NCPEDP-Javed Abidi Fellow on Disability working on Disability Rights in Deoghar, Jharkhand. Mahavir is the ideator and curator of Project Samajh, an initiative to understand disability, policy formulation and intervention by adopting a multi-sectoral approach. Mahavir can be reached at his LinkedIn profile.
This interview was conducted in May 2023 through online mode in written format. The due informed consent of the interviewee has been taken before the publication of the blog. Further, the interviewee's ‘Right to be Forgotten’ shall be respected.
Hello Mahavir, please talk about your life journey in some detail for our readers.
Early Days
I was born in Bhagalpur, Bihar, in a middle-class family, on 23rd September 1993. I was born prematurely, which was further complicated by an accident when I was six months old and developed into hemiplegia on the left side. My father was a Botany professor at T.M. Bhagalpur University, and my mother was a homemaker, although she had a master’s degree in history. We were three brothers, me being the youngest. My middle brother was with us in Bhagalpur, and my eldest brother was in Delhi pursuing his bachelor’s degree. Our grandmother also used to stay with us.
We were a small nuclear family since my two uncles with their families moved out to Ranchi and Deoghar, respectively. My father was quite popular among students due to his eloquent lectures. He was also associated with Munger Ashram as he did his post-doctoral research in stress management through Yoga Practices from Kings College, London. His academic background had an impact on me, and I wanted to pursue his footsteps in my childhood. My mother was a typical homemaker with excellent skills in cooking. I still remember she used to prepare delicious Chole Bhature, which was my favourite. We had a small little world in which we were happy.
Heart Break and Ashram Days
But in an unfortunate turn of events, my mother passed away. Suddenly, we were in a dilemma forced by circumstances, where we had to leave Bhagalpur. I was three years old, while my middle brother was five years old. My middle brother chose to go to Deoghar with our uncle to continue his studies. I chose to remain with my father, who chose to go to Munger Ashram, where he intended to initiate into Sanyasa, which was a big decision for him and the family.
For me personally, it was the beginning of a new phase. To accommodate me in the ashram few conventional practices of Sanyasa had to be compromised, and I also had to come to terms with the ashram rules and code of ethics. The Munger Ashram was home to one of the most popular universities in Yogic sciences named Bihar Yoga Bharati, which attracted students and scholars from across the world.
For me, it was a unique opportunity to immerse myself in the world of spirituality, knowledge, and multiculturalism, which was a rare combination to experience. I didn't have to go to school as I had abundant sources of knowledge and overall growth in the ashram. My father was appointed as the Dean of the Applied Yogic Science department and used to take me to his classes, though I was very young. I used to grasp certain scientific or Yogic terms from the class and used to quiz my father later in the evening after the classes were over. When not in the classes, I was in the library, where I use to spend most of my time. It was here that I discovered my love for books. I spent hours exploring the books.
My guide was an Irish librarian who helped me find interesting books suited to my age. Also, she was my informal English teacher. She also taught me how to operate a computer which was a novelty in those days (1999). I started with Amar Chitra Katha and Tintin comics from the kid's section.
Gradually, I started to take an interest in literature, science and history, which was way before my formal schooling, which might be an influence of an open learning environment. There was no restriction on the curriculum. There were student groups from across the world, especially from Europe, coming from France, Spain, Belgium, Netherlands and Belarus. Such a diverse community of people made me appreciate varied cultures from a very young age.
It was also a phase of my life where I was very disciplined in my life. I used to wake up at 4’o clock in the morning, have breakfast at 6 AM, lunch at 10 AM, dinner at 5 PM, and sleep at 8 PM. Since I was the only kid in the ashram, which had two effects. On the one hand, I received immense love from the Ashram people and another hand; there were some people who were sceptical of my presence as they saw me as a deviation to Sanyasa Parampara.
As I started growing up, I started realising the importance of formal education. I could notice that all my brothers and cousins were in the school. Whenever I used to visit Deoghar, they narrated the stories of their schooling, about their friends and various activities in which they were involved. Though, in the Ashram, I didn't have any problems, I couldn’t visualise my future. I wanted to gain more knowledge, and more importantly, I wanted to make friends who were of my age.
I expressed my desire of wanting to go to school. My father enquired about some local schools in Munger and shortlisted some of them. But the Ashram administration was against this. They didn’t want anyone going to school from the ashram as it went against their tradition. Therefore, my father proposed I go to Deoghar to study with my brothers. It was a turning point in my life.
Deoghar Calling
I came to Deoghar, but finding an accessible school was not easy, which could accommodate me with my disabilities. I went to St. Francis School, where my brothers studied. The school administration said that ‘We are not going to take responsibility for this boy; if something happens to him, we won’t take the blame. My father was overprotective when it came to my safety. Then we looked for some schools which were nearer to home.
After shortlisting, we discovered that there is a new school called Deoghar Central School in Hirna, a locality in Deoghar, which was one kilometre away from my home in Belabagan. I went with my aunt for the admission. The school management was very cordial, and the process of admission went smoothly but the school didn’t have an accessible building, so the Principal offered to shift my class to the ground and instructed the staff not to shift the class to any other floor till I was there in the school. It was a welcome change coming from the head of the institution. Even the staff were very helpful and cordial to me. This was a new beginning for me, starting my schooling at the age of eight. I was there years old from classmates, to begin with.
However, as a result of my good performance in the examination, it was deemed fit that I should be promoted to first standard in the new session, saving me a year. I was well-received by my teachers, and the school also gave me the opportunity to make friends, and I did make good friends, some of them are still my friends. I was good in academics, which earned me respect among the teachers. It was my friend circle, which almost made me forget my disability, barring a few instances; for example, I barely used the school toilet as it was not having a commode and was not well maintained. Using the school toilet was a last resort for me.
Also, I was fairly good in other aspects, such as helping others, monitoring the class and making friends. I was very proud of the fact that I made friends with diverse backgrounds rather than isolating myself from one bunch of students. The ones who topped the classes were my friends, and the ones who flunked were also my friends. I even had a good rapport with the girls in my class. In fact, initially, I use to sit among girls and was comfortable with them, unlike other boys who see it as a punishment to sit among girls. I had limited interest in sports but was quite active in other co-curricular activities such as debate competitions, essay writing competitions, singing competitions and lending my hand in awareness campaigns.
Once, I remember in eighth class, I was part of an AIDS awareness campaign, where I had to rally by foot around the city, to which many teachers and friends told me to stay back as they thought it might be very tiring for me. But I was determined to join the rally and eventually ended up completing it. I also got the opportunity to represent my school in an inter-school science exhibition in class 8th in Ramakrishna Mission, and my group project, which was on hydroponics, won the first prize. To summarise, the school was the best ten years of my life.
Coimbatore Days
Moving on, after completing my 10th standard, my eldest brother, who was a doctor there, called me to pursue my further studies in Coimbatore. By that time, I was determined to take up the science stream in 11th and further pursue my career in the medical field. Coming to Coimbatore, it was yet again a cultural shift for me. It was my brother and sister-in-law who made me comfortable with the cultural shift. My sister-in-law is from Andhra Pradesh and is a doctor in the same hospital as my brother. So in the house itself, I was witnessing and was part of diversity. With ‘ Vadina’ (As they call sister-in-law in Telugu), I used to converse in English. She had a domestic helper from Andhra Pradesh who only knew Telugu. There was again one babysitter for my nephew, who was a Tamilian. I had to navigate through such diversity in the home itself, which also gave me the opportunity to learn from various cultures which were from different parts of India.
Speaking about my school, it was a Tamil Nadu State Board school and in English medium. The name of the school was Vivekalaya Higher Secondary School, which is a respected school in Coimbatore. I was the only boy to be admitted in 11th, which was otherwise limited to girls, owing to decent academic performance, and the Principal herself took my interview to make sure that I was fit for the institution. Contrary to the classes in Deoghar, here I saw a smaller number of students, which was designed for maximum learning.
Accessibility-wise, it was almost opposite to the situation in DCS. Accessible toilets, ramps, mats, and special cells to help weaker students were there. Till 10th standard, it also had NIOS, a curriculum specially designed for persons with disabilities. My classmates were quite open and friendly, but it took me a few months to develop a rapport with them. At that time, I was not fluent in English relative to the standards of elite schools, and cultural differences also made it a little difficult for me.
Initially, teachers were also sceptical about my abilities, both academically and physically, and whether I will be able to do practical experiments in the lab. It took me some time to gain their trust. But eventually, I found that I was beginning to lose interest in science, barring biology. There was an additional language subject French, which drew my interest. I started to find interest in literature and politics. The reasons could be many, but I feel the culture of rot learning which was practised and promoted in the school, made me disinterested in the conventional curriculum books. The focus was on getting high marks and understanding the concepts was given second priority. The purpose was to fit the predefined structure, which was a huge turn-off for me as a learner.
Somehow, I finished my 12th, and I was determined to change my stream to arts, and specifically, Political Science, as I started following politics, which was going through an interesting phase, where events like the Jan Lokpal agitation, the rise of Aam Aadmi Party, the rise of Narendra Modi at the national level attracted my attention. I wanted to understand politics more deeply.
Coming Back to Deoghar
After completing 12th and returning to Deoghar, I applied to Delhi University for my graduation. I even got selected for five colleges, but my father told me not to go to Delhi, as it was a new place, and he was sceptical and worried about my ability to live there on my own. I tried getting into some colleges in Kolkata, in which I had to go through entrance exams. I couldn’t crack it, as I had very little theoretical understanding of political science as a subject.
Eventually, I enrolled myself in Indira Gandhi National Open University (IGNOU), which gave me enough flexibility to continue my education from Deoghar and the need to attend physical classes. It had both positive and negative impacts. If I talk about positive impacts, firstly, it gave me ample time to explore other subjects and fields. In those three years, I read a lot about politics, society, economics, and literature. I accumulated a vast corpus of books ranging from varied topics. Secondly, it gave me the opportunity to work with my father and his NGO Nutan Sanjeevani Sansthan, which works in the healthcare sector, which my father founded in 2009 after his retirement in Deoghar. I understand the working of an NGO and dealing with people.
What it took away was an experience of college campuses and the buzz, which was not a significant loss considering the benefits I was getting otherwise. Simultaneously, I was preparing for UPSC, the dream of every average middle-class student. But while preparing for it, I realised, it’s very important to get practical experience in public policy. Therefore, I started searching for such courses online.
That’s how I found the Tata Institute of Social Sciences (TISS). I found courses like public policy, urban policy, and disability studies that were aligned with my interests. There were three preferences to be selected. I chose all three in their respective order. I cleared the first round of online tests, and then I was called to Mumbai and Hyderabad. In Mumbai, the interview on urban policy and disability studies took place. For public policy, I had to go to Hyderabad. Eventually, the results came, and I was selected for urban policy in the first list. For the first time in my life, I was ecstatic because I had achieved it on my own without much guidance.
TISS Life
TISS was a different creature altogether. I could easily say it is one of the most liberal campuses in India. I loved the open culture, which resonated with my core philosophy. For the first time, I could see persons with disabilities in a bunch with diverse disabilities. The campus was very accessible, as per my previous knowledge and experiences. The political atmosphere was also vibrant. I wanted to explore everything because I had read and heard about them from a distance.
To be honest, I spend my first year of college in extracurricular activities. First thing I observed, there were several political groupings, but no such group was there for persons with disabilities, despite the presence of the School of Disability Studies. Persons with disabilities were divided into several isolated groups and lone individuals who didn’t find any significant voice in the agenda of various political groupings, which eventually supported individuals of their ideological persuasion in the student union.
I assembled a few persons with disabilities under a common umbrella of the PwD Working Group, which sought to prioritise certain issues of Persons with Disabilities on the campus and work with the student union and Equal Opportunity Cell. We used to have meetings amongst ourselves to discuss various issues, such as the inaccessibility of certain spaces, which were not discussed as they were spots of greenery and aesthetics and the implementation of an access audit which was done by I Access Cell under the Centre of Disability Studies.
I was involved in discussions with various political groupings to talk about disability, but the outcome was dismal as they had other priorities. Inclusion in the agenda was merely ornamental. But, personally, it allowed me to interact and understand various ideologies and make genuine friends.
In the second year of college, I focused on internships and preparing my dissertation topic on ‘Disability and Design - An Socio-political Enquiry into Inaccessible Built Environment’. It gave me the opportunity to work and interact with architects, disability rights activists, organisations of persons with disabilities and persons with disabilities of various types, age groups, and genders. It taught me much about the disability rights movement and the various debates surrounding it. After completing my master’s, I immediately joined M.Phil in Development Studies but left it after the first semester in the lockdown since online classes were not giving me the required outcomes and were affecting my mental health in the midst of the lockdown in Mumbai.
Deoghar 3.0 and NCPEDP Fellowship
I decided to come back to my home in Deoghar and started looking for work remotely. I briefly worked with Ekansh Trust, where I used to write blogs for them. Towards the second half of 2021, I got selected for the NCPEDP-Javed Abidi Fellowship on Disability and worked on the access of UDID cards and social security schemes for persons with disabilities. I am also working with community, panchayats, blocks and district officials in Deoghar for skill training of persons with disabilities in rural areas. I also run an online initiative called Project Samajh to discuss disability from a multi-sectoral approach and bring out stories of persons with disabilities. I still love reading books and planning to start a book review blog soon.
Please talk about your condition/disability and comorbidities, if any, in some detail.
I have hemiplegia on the left side, caused by an accident when I was six months old. I fell from the bed and on the right side of my brain. I was immediately unconscious, and my body started becoming bluish. I was taken to a nursing home and somehow regained consciousness. After that, I kept getting sudden attacks, where I would hold my breath whenever I would cry, and my body became blue. This phenomenon continued for about a year.
By the time I was two years, I couldn’t walk, which was unusual. Also, I had other comorbidities, such as eosinophilia which made me cold-sensitive and weakened my immune system. It remained a factor for me till the age of 12, but its impact on my body’s constitution remains till now. I started walking when I was three years old. But couldn’t walk freely without human support especially walking on rough surfaces and climbing stairs. Many a time, I used to fall and faint away, especially when the impact was on my head. I somehow managed myself in the Ashram with the help of my father and his students. But there was no permanent cure for my condition.
I did try to get help from physiotherapy and acupuncture. It did help me to some degree to improve my mobility, and I started becoming relatively independent as I could now climb stairs by holding the handrails, but still my feet and hands did not form enough, especially my left side. It was not until I was eight years when I was taken to Kottakal, a place in Mallapuram district, for Ayurvedic treatment which showed some visible improvement in mobility which coincided with the year when I joined the school.
Now I could run, play outdoor games, and do fitness exercises. My right side became very active. But my left side still has issues with my hand strength and limp in the leg. But I became fairly independent after that treatment which is consistent till now. I still have issues with climbing stairs without any handrails or wall support, using Indian toilets and navigating crowded spaces, but I am able to manage it fairly independently.
Also, with age, I discovered some issues, especially after the COVID days in Mumbai when there were strict lockdowns, and we couldn’t move out in the open. During that period, I used to stay in a rented room at Surjog Hostel in Govandi area. Due to lack of adequate exercise and movement and eating food from online food delivery apps led to an increase in my body weight and also constrained my body’s mobility. It made me realise that it is important for me to stay lean and fit to retain my body’s mobility. It was also the period where my mental health was impacted. I do travel independently, but I do take support where it’s needed.
Coming to the present scenario, where I am doing a fellowship with NCPEDP, I mostly travel to rural areas, which are inaccessible, so I have to travel by car, which adds to the cost of travel and basically is the cost of disabilities. Had I used any other medium, it would take much more time for the same and added the risk of uncertainty.
Do climate change and its induced disasters (read extreme weather and climatic conditions like heatwaves, cyclones, floods, etc.) have any impact on your physical health/condition? If yes, please illustrate the ways it affects you.
As I have mentioned earlier, As a kid, I had eosinophilia, which means I was extremely cold-sensitive and basically allergic to weather changes and packaged food. In Munger and to some degree in Deoghar, during winter, I used to get cough, which would continue for months. It used to drain all my physical energy, which was reduced with age but still has a seed in my body.
Recently I recovered from measles; it coincided with seasonal change. Cough accompanied with it. But in three years in Mumbai, I never had a long-term cough since the temperature of Mumbai remained stable. The same was the case with Coimbatore, where winter is never experienced. In Mumbai and Coimbatore, I was the most healthy physically as there were no illnesses. Also, during the rainy season, I have difficulty navigating slippery surfaces.
I would share one instance. At TISS, there are two campuses, Old and New. I resided on the new campus as all my classes were in the new campus, but during the festive days, the mess in the new campus was closed, and food was available only in the old campus. If it was on a rainy day, To go to the old campus, one had to walk through the water clogging and algae in front of the hostel building. I had to go through the main gate of new campus and come to the backside connecting the road to the old campus, which basically had engraved stones on it, making the whole path inaccessible. Enter the back gate of the old campus, and you will find a slope full of green algae, making it dangerous for even non-disabled people to walk through. Wheelchair users might have jerky experiences, but I had the risk of falling and hurting myself critically. Then you enter the dining hall, which has a crowd of two campuses. You can’t even stand, forget getting a seat if you are late.
Do climate change and its induced disasters (read extreme weather and climatic conditions like heatwaves, cyclones, floods, etc.) have any impact on your mental health/condition? If yes, please illustrate the ways it affects you.
I can’t directly say about climate change-induced disaster, which caused mental health issues, but COVID, which is a man-made disaster and resultant lockdown, affected my mental health to a significant degree. Just imagine yourself in a small locked-up room in a hostel in Govandi, which was the hotspot in Mumbai. Nobody to talk to. Nowhere to go. Your food is coming through food delivery apps which is often unhygienic. Your only distraction is your laptop and mobile, where six hours you are attending online lectures and the next six hours preparing for assignments and presentations. No real human-to-human connection. This was roughly the routine for me for six months. It drained my energy, and I didn’t know what to do next. Something I was not prepared for.
What do you think about climate change and its induced disasters (read extreme weather and climatic conditions like heatwaves, cyclones, floods, etc.) acting as a threat multiplier and resulting in capability deprivation (like loss of livelihood or additional medical expenses, etc.)? Please provide a personal account, if plausible.
Certainly, it acts as a threat multiplier and results in capability deprivation.
I remember when I used to get cough in extreme winter, I was forced to Bunk classes in the school, sometimes for a week or two which also compounded my disability. It affected my productivity significantly.
Please tell us about any measure/action you take to adapt and mitigate the negative impact of climate change and its induced disasters (read extreme weather and climatic conditions like heatwaves, cyclones, floods, etc.) in your life to avoid worse-off experiences (like avoiding travelling during extreme weather conditions or certain medication, etc.)? Please provide a personal account if plausible.
It looks like a complicated question, but it’s not. As I mentioned previously regarding the inaccessibility of the TISS campus while the rainy season, following basic accessibility standards will help.
TISS has already done the accessibility audit; they just need to kindly implement it. Use of common sense, for God's sake, like not engraving stoned bricks, which look great aesthetically but become horrible for accessibility in heavy rain. There is some recent improvement, which has been rectified, but it’s still a long way to go.
What else do you think needs to be done to counter the worse-off experiences of climate change and its induced disasters (read extreme weather and climatic conditions like heatwaves, cyclones, floods, etc.) and to counter the disproportionate impact of climate change and its induced disasters on persons with disability concerning their physical and mental health, work and livelihood, hunger and poverty, disability-inclusive disaster risk reduction, etc. to ensure disability-inclusive climate justice.
In my opinion, climate change as an issue as well as the domain in recent times has become extremely critical. Extensive data based research are being done constantly, and it has become one of the top topics in international organisations, conventions and agreements but it has been observed that disbursal of adequate and simplified knowledge about climate change and its impact in day-to-day life has not been passed to the communities and local administrative units.
In the event of extreme natural calamities, most of the models of rescue and rehabilitation are operationalised at the state and central levels, mostly due to the constraint of resources at the local level. But, in order to create a robust and inclusive model of building resilience for climate change, governments have to focus on district-level knowledge transfer and create awareness and training modules for local communities which should necessarily include the needs of persons with disabilities.
This was Kumar Mahavir talking about his life journey and lived experiences with disability and climate change. We, at The Sangyan and Ulgulan Talks, thank him for giving his precious time and an opportunity to know about him and his lived experiences.
Abhishek Kumar is an NCPEDP-Javed Abidi fellow on Disability currently working on the “Impact of Climate Change on Persons with Disabilities. The author can be reached at <abhishek.ncpedp@gmail.com>.
The interview has been published on the blog of The Sangyan as part of its public engagement and discourse initiative called ‘Ulgulan Talks!’.
