Puducherry, the quaint union territory nestled on the shores of the Bay of Bengal, is home to a diverse agglomeration of cultures, traditions and people. Due to its turbulent history, the city has found itself being passed down from one hand to another, and with every exchange, it has adopted and integrated some of its patron community’s values, ideas and beliefs.
On my very first day in Puducherry, I made my way down its winding streets, and found myself by the shores of Beach Road. As I sat under the shade of a tree under the blistering afternoon sun, with a stray puppy sprawled near my feet, I saw that I was swimming in an amalgam of identities.
Tourists with sunglasses and straw hats were taking pictures by the waves. Students with wind tousled hair walked around aimlessly, swinging their backpacks with a carefree smile plastered onto their faces. Fishermen sat by painted wooden boats, discussing seriously amongst themselves, with the Tamil flowing from their lips like the seawater which dripped from their clothes. Women with silk sarees and jasmine flowers braided into their hair laughed as they shared a plastic cup brimming with pineapple. An older man with his hands full of literature books, likely a professor at a nearby university, spoke fervently into his cellphone: “India is changing, and so must we.”
With immense diversity in language, nationality and race, Puducherry has accepted all of its people with open arms. Yet, one community still struggles to be seen.
The Invisible People
For centuries now, people with disabilities (the official terminology being PwDs), have remained an invisible and unseen group in India. In fact, the exact population of PwDs still remains unknown and unaccounted for, due to a lack of inclusive questions present in the previous Census undertakings. In recent years, there have been commendable governmental efforts to document individuals with disabilities living in India, through the Unique Disability ID scheme. However, there are still significant gaps in our knowledge which must be addressed. Without a comprehensive understanding of the status and needs of the beneficiaries, non-profit organizations, welfare schemes and policy-making bodies are essentially operating in the dark.
My work with Satya Special School aims to address this very issue, through the implementation of The VisAbility Project. Through data collection, field research, and data analysis, we aim to understand the needs, interests and the systemic patterns of inequity which persist in the PwD communities living in Puducherry and Karaikal. Specifically, my project will be exploring the role of genetically and epigenetically associated factors at play in the disability community.
Understanding The Genetics Of Inequality
Most people have a tendency to view genetics as a static entity, which is passed down from parents to offspring. However, the reality is that our genes are extremely dynamic and sensitive to the environments around us. Adverse situations such as growing up in a low socioeconomic household, experiencing physical or mental abuse, consuming polluted water and more, can cause biological changes which alter the way that our genes are being expressed! They leave behind genetic marks in our genomes, which can shape the way that we perceive the world around us.
In order to understand this phenomenon, let’s consider the example of children who come from extremely impoverished and low income communities. Poverty is associated with a wide range of factors including increased stress, poor nutrition, trauma and exposure to harmful chemical environments.
A genetic study conducted (Swartz et al., 2016) found that prenatal exposure to poverty-related factors caused epigenetic changes in the developing foetus, resulting in increased DNA methylation. These genetic changes during pregnancy, resulted in the child being at an increased risk for mental health disorders in adulthood.
Experiencing a mental health disorder often results in difficulties with academic performance, employment and health, which further exacerbates the child’s poverty status. In this manner, vicious and never-ending poverty cycles and poverty traps are formed among communities.
Alison Gopnic, a Berkeley Psychology professor, discusses the relationship between poverty and epigenetics in further detail in the video below.
What Are The Implications of This?
This study, among many others, illustrates the role of epigenetic changes in influencing a lifetime of opportunities. It is critical for us to understand the associated risk factors, and the multidimensional effect they have on an individual’s well being, in order to break the shackles of poverty traps operating in India today.
My project is focused on understanding and identifying genetically and epigenetically associated prenatal risk factors within the disability community. Through carefully designed survey and field research, I will be collecting and analyzing primary research data which will be curated to create a risk assessment checklist. This checklist will highlight the primary social, environmental and physiological risk factors for disabilities. Prospective parents exposed to these risk factors, who score above a threshold score on this checklist, will be directed to genetic counseling and other support services.
The intention of this study is simple: to ensure that every parent is fully aware, prepared and has access to the appropriate support structures and resources required to raise a child with special needs. Studies show that children who have access to early intervention measures exhibit significantly improved social behaviors, cognitive development and achieve age-appropriate milestones. Hence, ensuring genetic awareness and preparation prior to birth, can play a monumental role in assuring the well being and growth of the child with special needs.
It is time for us to widen the lens through which we view societal inequalities. Our surrounding infrastructure impacts us on the most fundamental and biological level, from prior to even our birth. In order to solve developmental challenges and facilitate social mobility within communities, a thorough comprehension of the histories and stories of the affected beneficiaries is required. We must understand and account for the heterogeneity of the human experience.
- Swartz, J R, et al. “An Epigenetic Mechanism Links Socioeconomic Status to Changes in Depression-Related Brain Function in High-Risk Adolescents.” Molecular Psychiatry, vol. 22, no. 2, 2016, pp. 209–214., https://doi.org/10.1038/mp.2016.82.
- Reardon, Sara. “Poverty Linked to Epigenetic Changes and Mental Illness.” Nature, 2016, https://doi.org/10.1038/nature.2016.19972.
- Gopnik, Alison. “Poverty’s Vicious Cycle Can Affect Our Genes.” The Wall Street Journal, Dow Jones & Company, 24 Sept. 2014, https://www.wsj.com/articles/genes-play-a-role-in-poverty-1411567833.
- Banik A;Kandilya D;Ramya S;Stünkel W;Chong YS;Dheen ST; “Maternal Factors That Induce Epigenetic Changes Contribute to Neurological Disorders in Offspring.” Genes, U.S. National Library of Medicine, https://pubmed.ncbi.nlm.nih.gov/28538662/.
- Mackenbach, Johan P. “Genetics and Health Inequalities: Hypotheses and Controversies.” Journal of Epidemiology & Community Health, BMJ Publishing Group Ltd, 1 Apr. 2005, https://jech.bmj.com/content/59/4/268