After me, who?” has been the anguished question of parents and caregivers of persons with disabilities in India for decades. Indeed, the early stages of the disability rights movement in the country were arguably driven by individuals trying to ensure their wards have the best quality of life possible.
India has not always been kind to its 2.68 crore (as per the 2011 Census) disabled citizens. Every bit of access to resources—education, public space, employment, benefits—has been hard won. There has been change, with many more persons with disabilities now in positions to advocate for themselves. Legislation has changed to reflect a rights-based approach in line with global commitments. Yet, much remains to be done. Last week, an 88-year-old in the heart of Chennai was reported to have poisoned his disabled son. It is believed he did this out of fear of what would happen to his son after his death. That many parents have to resort to such cruelty from a position of helplessness is an indication that the system has failed at every step.
By law, the state is meant to provide early identification services, skill training for child and caregiver, inclusive education, support for livelihood and a barrier-free environment. The state is meant to ensure the person can live independently or, if required, with some support. Both the National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act and the Rights of Persons with Disabilities Act are meant to facilitate it. In reality, persons with disabilities face an unaccommodating environment at every stage, pushing many into a vicious cycle of illiteracy, unemployment and poverty. But disability is an afterthought.
The Budget estimate for 2019-20 is `1,942.2 crore, or 0.07% of the total—barely enough to scratch the surface of what the law promises. If India is serious about its commitments to every citizen, it needs to put its money behind its legislation so that caregivers need not live in fear and disabled persons are able to live fully on their own terms.