No law can completely change a landscape of stigma and discrimination. But the new disability rights bill could mark a new beginning
This article does not aim to extol or excoriate the contentious disability rights bill introduced in the Rajya Sabha. Rather, it discusses the lives of people with complex, frequently intractable disabilities and their families, who are also “disabled” by endless care and the prospect of an uncertain future. In the heated debates within the disability sector around the bill, the voices of these segments have been lost.
This article reflects my observations as the mother of a teenager with autism and a researcher exploring the lived realities of families of children with this condition.
Autism is a neuro-developmental disorder affecting the core capacities of language, social communication and imagination, the causes of which are as yet unknown. In India, awareness about the condition is limited and a diagnosis is hard to come by. Parents have to run from the paediatrician to the neurologist to the psychiatrist with a terrified child in tow, only to be told that theirs is a “hopeless case” and they had better “try again” for a so-called normal child. These children may be turned away from “normal” schools because they are believed to be violent, disruptive and hyperactive; teachers complain that they neither sit still, nor pay attention nor engage in social play with peers. If they are more “manageable”, they may be allowed to attend school, but run the risk of bullying and possible abuse. Of course, much of this discrimination stems from a lack of awareness. In many “special” settings too, their unique needs and challenges are neither understood nor accommodated. The lack of education or vocational/ skills training renders them unfit for the job market and so they are considered “burdens” to be borne by the beleaguered family.
Disability is never an individual condition. It affects the life-chances and experiences of the entire family. The greatest stigma is usually borne by the mother; in a patriarchal society that valorises her mothering role, she is seen as being responsible for her child’s condition. If she works, she is accused of neglect. The child’s special needs and quality of care become her biggest responsibility; from rendering assistance with feeding and cleaning to teaching, training and playing with a child who no one else wants to engage with. Fathers, especially if they are the sole bread winners, must reckon with keeping the family afloat and plan for their child’s future. Non-disabled siblings learn early that they may have to be the surrogate parents of their autistic sibling when their parents age and die. However, the complex and stigmatising nature of continued…