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 the disorder mean they may find this difficult to deal with.
So is life for such families unremittingly bleak? Obviously, families with better access to information, services and counselling are likely to cope better with a child’s disability and provide a better quality of life to their children. The combination of poverty, disability, lack of access and social support is devastating.
Autism Spectrum Disorder did not find mention in the Persons with Disability Act of 1995. The new bill does include it in the list of disabilities to be notified and therefore eligible for state assistance. Official recognition opens access to services and creates awareness and knowledge. The healthcare and teaching professions will have to factor in these newly notified disabilities in their professional practices and competencies, thereby opening doors to those who desperately need services. Once a social group is granted recognition as a category that merits rights and entitlements by the state, societal attitudes too undergo a change. Of course, no law in the world can act like a magic wand and completely change a landscape of stigma and discrimination. But it is certainly a beginning. Within the disability community, the marginalised amongst the marginalised have waited patiently for a new law to be enacted. While those with physical disabilities can vocally lobby for their interests, persons with autism and intellectual disabilities, because of the very nature of their impairment, may find it hard to do so. Their parents and allies must stand firmly with them, waiting for the time when, empowered with rights and supported by a caring society, they will find their voices and advocate for themselves. Perhaps then, the slogan of the disability rights movement, “nothing for us without us”, will resonate with greater authenticity.
The writer teaches at the School of Interdisciplinary and Transdisciplinary Studies, IGNOU, New Delhi