World Disability Day is on 3 December. While my own understanding of disability has grown because of my journey with my disabled son, I have begun to see disability not as a category, but rather a spectrum in which we all occupy a space. With more than a billion people affected by some form of disability, in addition to the growing population of people with age-related infirmities, this is the largest minority on the planet. Consider that there are more people today above the age of 65 than below 5 and 22% of people will be over 60 by 2050. This population cannot be ignored and no one will escape being part of that minority.
Disability is not just defined by a person’s inability to perform certain functions, but also by the degree to which social and structural barriers prevent the person’s full participation in society. To that end, we all should take a moral stand to include every person for building a meaningful society.
There are five broad challenges that we need to urgently address if we want to make India inclusive.
First, a lack of awareness. Negative views on disability are deeply rooted in tradition. Awareness is a huge challenge, and changing mindsets—not only in society but among employers—is key. It is ironic to see disability events where panel discussions on it are held with no representation of persons with disabilities (PwDs). “Nothing about us without us", the widely adopted motto of inclusion and self-representation by the disability rights movement, is still not understood by the majority. There needs to be a fundamental shift from the subsidies-and-charity approach to a coolabilities-and-rights approach. Coolability is a term that identifies the disabled by their strengths.
Second, the poor implementation of a basically sound law. India’s Rights of Persons with Disabilities Act, 2016, is a strong and progressive law. However, it merely lists disabilities (from 7 in the past to 21 now) instead of defining disability as an inability to perform certain functions (similar to the American Disabilities Act). We are still a long way in its implementation nationwide. For instance, the National Building Code was revised in 2016 to encompass accessibility, and detailed standards were laid down for new public buildings (not just government). However, states are yet to change their by-laws to incorporate them. Also, the government has issued guidelines for inclusive education, but where are the teachers? We lack not only special education teachers, but also regular teachers trained to handle children with disabilities. Further, is it only the ministry of social justice and empowerment (MSJE) that is responsible for disabilities? Every government department must implement what the MSJE has laid down. However, the cross-departmental awareness of disabilities is abysmal.
Third, insufficient data. Rights activists have only recently got disability included in census data and hope that the 2021 population census will deliver better results. The number of PwDs was grossly underestimated in the 2011 census (they constituted 2.2% of the total population). Framing the right questionnaire is crucial to collecting credible data, and a detailed breakdown of the data is vital to policy formulation. Also, when it comes to implementing social programmes for PwDs, we need a more experimental approach, such as randomized control trials, which have been popularized of late by Nobel laureates Abhijit Banerjee, Esther Duflo, and Michael Kremer.
Fourth, the lack of accessibility. Living in a world not built for the disabled can be a source of huge frustration. Inaccessibility means no education, no employment, and a consequent deterioration in the quality of one’s life. In many ways, the software industry has shown some leadership, with devices like the iPhone having changed the lives of PwDs. The principles of “universal design" must be followed to make places accessible.
Fifth, the absence of a holistic approach. Today, PwDs as well as the organizations that work for them fail to speak in one voice. A middle-aged deaf person does not find common ground with an old person on a wheelchair or a young autistic person. We cannot have real progress unless we abandon our “scarcity mindset". The success of one disability cannot come at the expense of another, and we need to take a horizontal approach. Also, we need to drive systemic thinking. Most change remains at the level of building a prototype or pilot programme, or at the level of building communities. However, real change must occur at the system level.
What’s needed is an end-to-end approach. This can be done by devising an “inclusion continuance" that would cover awareness, advocacy, early intervention, education, employment, lifestyle, and assisted living. Each of these needs to be connected, both online and offline. This is the biggest challenge. We need to work together to remove the social, institutional, and legal barriers that exist today. The journey to an inclusive world may seem like a pipe dream, but our victory, once achieved, will be sweetened by the difficulty we faced along the way.
V.R. Ferose is senior vice-president at SAP based in Silicon Valley