As an AIF Fellow placed with Satya Special School in Puducherry, my journey has been nothing short of transformative. With a Masters in Biotechnology & Genomics, I had entered the Banyan Impact Fellowship as a fresh graduate, eager to apply my knowledge and learn from new experiences within the developmental sector.
As I went through the process of attending multiple interviews and calls with host organizations, I found that I was immediately drawn to Satya Special School, a non-profit organization working with children with special needs in Puducherry and its surrounding rural areas. Founded in 2003, Satya’s mission revolved around empowering people with disabilities, to lead the way to inclusion in education, employment, healthcare and society. I was entirely enticed by their project: an initiative conducting data-driven research to document and analyze the current status of people with disabilities (PwDs) in rural India. I found that there was a willingness to provide mentorship and creative flexibility within my project work.
Most People with Disabilities Live in Rural Areas
At the start of my fellowship journey, I was given the opportunity to not only work on their ongoing project, but to design a project of my own. I engaged with my supervisor and my co-workers in order to develop a second research project: the VisAbility Project. The VisAbility Project (vis, in Latin, meaning force, strength, power), aimed to shed light on a historically neglected community: PwDs living in rural India. It utilized field-based qualitative and quantitative research in order to analyze the current status of PwDs and identify potential risk factors for disabilities.
Of the millions of PwDs residing in India today, an overwhelming 70% of them are located in rural areas. A majority of these individuals remain undocumented and “invisible” within census endeavors. With insufficient data, Indian disability policies are essentially operating in the dark. Implementing effective interventions is an impossible task when the status and needs of the beneficiaries remain unknown. The purpose of The VisAbility Project was to fill in some of these gaps in knowledge through comprehensive data-driven research. The insights gained from this project will play a pivotal role in the development of inclusive interventions.
Working Within The Disability Space
As a first-timer in the disability space, I had lots to learn. Through collecting data, interacting with coworkers, engaging in organizational workshops, and shadowing my supervisor, I was able to develop an understanding of the world of disabilities. My key learnings and takeaways from the experience included the following:
- Disability is Dynamic: Disability is not a fixed state but rather a multifaceted and evolving condition that requires a nuanced understanding to promote inclusivity and support individuals in achieving their full potential. Recognizing the dynamic nature of disability is crucial for fostering inclusive societies and ensuring equal opportunities for all.
- The Role of Gender in Disability: Gender roles and stereotypes can also shape the perception of disability, affecting how individuals with disabilities are treated and supported within their communities. Women with disabilities often face multiple forms of discrimination due to their gender and disability status, experiencing higher rates of violence, limited access to resources, and barriers to participation in decision-making processes.
- Battling Culturally Ingrained Barriers: There are multiple cultural barriers within the disability space that must be addressed and acknowledged before delving into this domain. Endogamy is a common practice among many communities and a contributor to disability incidence. In addition, the practice of hiding away female children with disabilities leading to an underdiagnosis or missed diagnosis is a common phenomenon. Operating within these barriers whilst respecting the nuances of cultural differences can be a difficult task for any disability based organization.
- The Role of Blame: Mothers in particular are stigmatized for having children with special needs. There have been countless stories of young mothers being disowned and neglected by their families due to this. In addition, though non profits focus on the well being of children with disabilities, the physical and mental well-being of their mothers is highly neglected and ignored.
- Representation Matters: Representation from within the community is crucial in order to build sustainable systems within the disability space. People with disabilities need to hold leadership positions, and places of power within intervention systems in order for change to occur in a sustainable manner, with long-term growth.
Patience & Perseverance
As I reflect on my Fellowship experience over the past nine months, there are too many memories to count. From interacting with the children, to witnessing disability sensitization workshops being held by Satya Special School, my professional journey has been multidimensional, rich, and dynamic.
Yet, when I look back, the one memory that comes to mind is one which is unexpected. Each day at Puducherry ended with an evening walk down MG Road. As the vendors set up their stalls with their daily wares, I would see a woman and her son set up their jewelry booth on the sun soaked pavement. Every evening, they would give me a smile and a wave as I passed by them, and that interaction became a heart-warming part of my day to day routine in that city.
In many ways, the vendor and her child represented the essence of Puducherry for me: a quiet and consistent strength that allows you to show up for yourself and the people around you, each and every day. I saw semblances of this strength in the mothers who brought their children to Satya day after day with the determination to ensure the well-being of their child. I saw it in the staff workers who talked to frightened children with gentleness and unrelenting patience, and in the faces of the children who allowed me into their lives with warmth and unconditional trust. Out of all my learnings with Satya Special School, this has been the most powerful: Practicing patience and commitment to one’s cause is foundational to executing any form of change.
