There were two events that made the world sit up and look at disability issues last week. One was a rousing speech at the Democratic National Convention in Philadelphia by a young girl in a wheelchair, Anastasia Somoza. The other was the brutal murder of 19 people at a centre for people with disabilities in Sagamihara, Japan. There are lessons to be learnt from both these stories.
When Somoza took the stage in Philadelphia, she was in effect a symbol of the struggle of people with disabilities in the US for equal rights. Somoza epitomised the fact that children with disabilities have the right to go to school, that people with disabilities have a right to employment and that they have an equal say in the politics of their country. This story is what most disability rights movement across the world align with and are thriving for.
The Indian cross-disability rights movement that began in the early 1990s was in fact inspired by its counterpart in the US. This movement led to the Persons with Disabilities (Equal Opportunity, Protection of Rights and Full Participation) Act of 1995, which guaranteed that people with disabilities in India had the same right to education, employment and accessibility that any other citizen of the country had. It is because of this Act that we now have people with disabilities in schools, colleges and in the civil services. We may yet be very far from having our own Somoza, but elections in India have now started taking into consideration the needs of people with disabilities – a movement that started in 2004.
Objects of charity
Despite all these advances, the reason that led to the horrific hate crime in Sagamahira may be far closer to the perception of disability in India than we would like to believe. The Sagamihara killer believed that people with disabilities could be euthanised with the consent of their guardians. He believed that people with disabilities are a burden and could not be part of society. This belief is rooted in the historical perception of people with disabilities as objects of charity. The fact that the killer evoked the word ‘guardian’ is also interesting as it reflects how we dehumanise persons with disabilities. On a personal note, I have lost count of the number of times people behind the desk at airports and hotels have directed questions meant for my disabled colleagues at me. “Will he need an aisle chair?”, “Will he need a roll-in shower?” – all this while the person who can best answer these questions was right there next to me.
Why are we so uncomfortable with the concept of disability? For all our unity in diversity claims, India has not been able to accept people with disabilities as part of human diversity. The answer to why this persists perhaps lies in the fact that persons with disabilities have remained at the periphery of public discourse. We mistakenly believe disability to be a homogenous experience affecting only a few people. This is far from the truth. Disability is an experience that cuts across generations and affects at least 10-15% of the population. As our population ages, this number is only going to go up.
Yet, we do not see disabled people in our public life. Less than 50% of our government buildings are disabled-friendly, as the Accessible India Campaign has discovered. Despite India having a right to education law, out of 2.9 million children with disabilities in India, 990,000 children aged six to 14 years are out of school, a UNESCO and UNICEF report revealed. Acceptance of differences is imbibed at a very young age and children without disabilities are growing up with limited to no experience of disability.
Our refusal to accept people with disabilities as contributing members of our society has not only lead to a loss of 3-7% of GDP annually, as calculated by the ILO in 2010, but it also reinforces the narrative of disabled people requiring charity. It is therefore no wonder that the government perhaps spends more on the prevention of disability than it does on enabling persons with disabilities. A study by the National Centre for Promotion of Employment for Disabled People examined union budgets and spending by various ministries from 2008 to 2012 to ascertain how much the government spent on disability-related concerns and discovered it was a measly 0.0009% of GDP.
The recent controversy over the use of the term divyang is also a reflection of the struggle for self-determination for people with disabilities in India. Yes, it is true that there may not be a rights-based equivalent in Hindi for the term ‘persons with disabilities’. But the choice to identify with any terminology is the prerogative of the people and should not be defined by societal constructs that patronise them. Unfortunately, these issues hardly ever find space in our mainstream public discourse.
The two events of last week showed two very different realities for persons with disabilities. India needs to take heed from these and decide which narrative we want to see in our country.
Dorodi Sharma is a disability rights advocate and has worked in India and internationally on campaigns on disability inclusion