May 28, 2020

A Home of Her Own: De-institutionalization and Community Lives

Janaki Amma (name changed to protect her identity) loves hosting, making chai and doting on her daughter. She is a woman with cognitive disabilities, with a frame frail and a great sense of humor. As we sit down for tea, she wants us to see her new shoes and clothes that she has folded with great care. She insists we have tea, and biscuits.

Life for Janaki Amma has not always been easy. Till recently, she and her daughter, Komal (name changed to protect her identity) lived at a government shelter home for women in Dehradun which houses abandoned and destitute women with mental and cognitive disabilities. More than 100 women, at any given time, live at the institution and their movement is severely restricted. There is no concept of privacy, or agency for these women. As the State’s wards they do not have the rights of an individual. They cannot make any decision of their life, from what to eat and wear to where to live, with whom and how. The women are referred to as either “inmates” or “children”, by the officials, caretakers and other staff. Most of these women have no families that want to take them back. They have no visitors, and very little interaction with the outside world.

Rural India Supporting Trust, The Hans Foundation and Keystone Human Services International have launched a Community Lives initiative to change this narrative. We believe that every individual, irrespective of their cognitive and mental status, should live within the mainstream society, as part of a community. We are committed to the idea that institutionalization of people with disabilities in closed off and heavily restrictive institutions must be challenged, and it must be changed. With a partnership with Government of Uttarakhand and Dehradun’s premier Lehman Hospital, two family-style homes have been leased that are embedded in a community, where 8 women with developmental disabilities live, with one round the clock caretaker. In the last 6 months, we have been a witness to the value of autonomy and decision-making, and the positive and therapeutic effect that has had on the women in these homes. We have seen first-hand the changes these women have undergone, and how their neighbors have also evolved to overcome their reservations about them. The community has started to look inward to question the stigma and the discomfort they have only after a few months of interaction with the women.

We dream of a world, where every individual makes her own decisions, of her free will. Where every individual has capabilities of being part of a community. Where the shackles of institutionalization, the loneliness of abandonment and the disregard for a person’s humanity, are undone. Where everyone has a skill set to be a productive member of the society, with a sense of belonging to a family, to a home, to a community, and with a life of normalcy and autonomy. We believe that the Community Lives is a small step and a giant leap towards this goal. We at RIST are very excited to see the journey these women will embark upon, and what they make of their lives.

Photo Credit: Sujata Khanna Photography for KHSI