Opinion | A time shall come when a disability is no longer one
It is ironic to see disability events where panel discussions on it are held with no representation of persons with disabilities (PwDs)
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
Source : Livemint