Hands Across Water: A Sibling’s Story
Over a half a century ago, my family welcomed the arrival of a new member. This was an event that in retrospect seemed to have changed all of our family members’ lives dramatically. While the birth of my brother in itself was uneventful, it was with the recognition that his developmental milestones were delayed that we began to some extent to realize the challenges before us. Thus began my family’s difficult journey that took us through various psychological stages. At first there was denial. Planning for the care of an intellectually challenged person was particularly difficult in a culture that did not openly discuss handicapping conditions. A large network of relatives and friends provided support and sympathy at times; however, their limited exposure to developmental disabilities and traditional beliefs clashed with our endeavors. As the demands of my brother’s care grew, we turned to society for relief. While my family’s acceptance of his disability evolved, society’s acceptance of his special needs were slow in coming.
My father to his credit undertook an active role in the planning of his disabled child’s care. He partnered with Federation of L’Arche International (started by Dr. Jean Vanier) which gave encouragement and support to my father in the establishment of a special needs residence in Madras, India. My brother is considered the founding member of a group home called Asha Niketan (Home of Hope). For the last thirty-five years the home has welcomed people of different intellectual levels, including those with diagnoses of autism and Down syndrome, and individuals exhibiting maladaptive behaviors.
The five Asha Niketan Homes in India are said to be “a place for healing, where a person with special needs can live in an atmosphere of warmth, love, encouragement, and harmony like that of a family.” The homes have been relying on fundraising efforts along with local and foreign donations to operate. My father worked tirelessly to assist the homes.
The passing of my father left a critical void in the operation of Asha Niketan Homes. Drawing upon thirty years of experience, a cadre of colleagues, support of family and friends, I have been devoting time and energy to raising funds and improving the quality of life issues of the homes. The broader agenda of increasing awareness of the needs of the developmentally disabled and autistic individuals in India and around the world is also one of my goals.
Following global trends, India has come up with legislations to address the special needs of over 31 million developmentally disabled and about four million autistic individuals. Advocacy groups are pressuring for more resources and action. Cities have witnessed the development of several early intervention centers and special schools; however, only a small percentage of people can pay for and benefit from the services. Families continue to hope for specialized and individualized services.
Usha Venkataraghavan, MSW, MPA
Friends of Asha Niketan
The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.