Image description- Kumar Mahavir sitting on the plank with stretched out leg on the sidelines of Arabian sea in the Marine Drive . He is wearing black T- shirt and blue trackpants with red stripe . His eyes are closed and body in meditating posture. He is wearing a green camouflaged mask

Some of my colleagues, college mates, and acquaintances often ask me why I am working in rural areas in Jharkhand which is in contrast with my college degree which is in urban policy and governance., But interestingly they don’t question me working in the disability sector which somehow gets associated with my identity of being disabled. I will attempt to inquire and try to answer both phenomena. 

Coming to first, there are theoretical and technical arguments to it, and as an urban theory researcher, I can make it, which goes like this “Urbanisation is an ever-expanding process that has a tendency to impact even the most remote of rural areas”.

In my two years of experience working in rural areas, it is abundantly clear that mobile internet has made massive inroads in rural areas which has not only changed the way people connect with the outside world but also changing the culture and customs inside the village community. Some of the early adopters of the internet are the youth and  have not done so for some noble purposes but for sheer entertainment. One of the most visible manifestations can be found in how they celebrate in community gatherings in village fairs and religious occasions where they play morphed versions of Bollywood and Bhojpuri songs to suit the religious sensibilities of the community. There is a thriving local music industry which caters to these segments. Urbanization as a process, much before offering basic infrastructure in terms of roads, sewage systems, employment transformation, and planned development now has the ability to change the culture of the community, no wonder we see increased migration of youth to cities as their aspirational value system does not align with the stagnancy of the village economy. However the shift of the value system is not absolute which allows for an evolution of mechanisms that maintains continuity between the rural ‘culture’ and urban ‘economy’. As an Urban theory researcher, it fascinates me as it allows me to witness these transitions which no academic paper or book can offer .

However, my engagement in rural areas goes much beyond mere academic and intellectual exercise, which brings me to the second phenomenon of my identity as ‘disabled’ and my involvement in the disability sector. First of all,  being ‘disabled’ is one of the many identities that I associate with which is a personal one, something I can’t dissociate with. No doubt, while choosing to work in the disability sector my personal experience played a role, but I am not here just because I am a ‘disabled’.

When I was in TISS, Mumbai, I interacted with many student groups of various ideological persuasions. I didn’t initially wear my ‘disabled’ identity on my sleeves. I mingled with them as any ‘normal’ peer. While I didn’t see my disability and tried to fit in as many situations as I could, however many of them saw disability in me. Also, I didn’t find many disabled around them who could tell them what disability feels like. The fact that I could hang around them, quite evidently showcased that my disability is not severe enough. I have hemiplegia of the left side which results in limp in the left leg and clawed fingers in the left hand. On most occasions, I am fairly independent and I don’t use assistive devices. All these attributes make me ‘acceptable’ enough in a ‘non-disabled’ setting. On the other hand, there were disabled peers of mine with whom I could share my lived experiences and my vulnerability freely without feeling judged. But many of them were so consumed with their personal struggles that they couldn’t look beyond their disability. Apart from this, there is a sense of alienation among the disabled community from the larger society which leads some quarters of the community to have reverse exclusion of ‘non-disabled folks’ from their inner circles and there is the tendency to not open up in the larger student communities. Disabled community is highly scattered community where other social identities take precedence. Constrained by their disabilities, they face issues in mobilisation even on college campuses where physical proximity is minimal. Varied experiences of various types of disabilities also make it difficult for Persons with Disabilities to have common lived experiences. The difference in the degree of severity of disability also leads to different opinions, experiences lead to varied solutions to deal with their disability.

In my opinion, these are some of the many reasons we don’t see effective participation of Persons with Disabilities in the deliberations of their issues in public platforms. 

In this scenario, I found myself in the middle of the ‘disabled’ and ‘non-disabled’ worldview. This prompted me to engage with the topic of disability differently which often led me to go into uncharted areas. After devoting myself for nearly 4 years to the disability sector, I can say that, the disability sector needs to interact with other sectors and other sectors need to know more about disability. 

Lockdown forced me to come back to my hometown, Deoghar and coincidentally, NCPEDP came up with the fellowship on disability which enabled me to work on disability in rural areas. In the past two years, working in the grassroots in rural areas, I feel we need more focus on the hard facts of disability than rhetoric. We need more people who can mobilise people with disabilities but more importantly, document evidence to back up their arguments and cases. We need people who can confidently collaborate with various stakeholders from various sectors to come up with a comprehensive plan to execute things on the ground. I find myself duty-bound to work in rural areas as rural disability is still not mainstreamed and do not find representation in the elite seminars due to lack of data and pedagogical limitations on disability when it comes to people working in the grassroots. The disability sector needs more loose cannons like me and many others who do not fall in a straight line.

Author:

Kumar Mahavir

Founder and Curator,

Project Samajh

Javed Abidi- NCPEDP Fellow on Disability