"Disability is pain, struggle, brilliance, abundance, and joy."
― Alice Wong, Disability Visibility: First-Person Stories from the Twenty-first Century
Earlier last year, the Supreme Court ruled that insensitive portrayals of people with disabilities amount to discrimination. "This arises from inadequate representation and participation of persons with disabilities in the dominant discourse," the Chief Justice had remarked.
However, a couple of months later, a famous comedy show came under fire for satirizing disability for a few laughs. No action was taken against the comedian or the show despite the groundbreaking precedent set by the ruling made mere months ago.
The definition of a "Person with a disability" under the RPwD Act of 2016 is as follows - a person with long-term physical, mental, intellectual, or sensory impairment which, in interaction with barriers, hinders his full and effective participation in society equally with others.
This definition not only tries to embrace the full spectrum of the umbrella term disability but also brings to notice the fact that disability causes barriers to optimal social integration of a individual.
The United Nations Convention on the Rights of Persons with Disabilities (UNCPRD) was signed in 2007 to allow for a more inclusive society. India became one of the first nations to ratify the convention, passing the Rights of Persons with Disabilities Act (RPwD) in 2016. While the Government of India implicitly mandates a society with equal opportunities, people living with disabilities still struggle to achieve equity.
Disabilities - More Than Meets The Eye
The RPwD Act lists 21 broad conditions that fall under disability. They cover a vast expanse of ailments, some of which are visible, such as cerebral palsy, partial or complete paralysis, and blindness. What of the invisible ailments, then, which continue to affect the patient's experiences and life? The RPwD covers unseen neurological conditions like multiple sclerosis and chronic blood illnesses like thalassemia, but a 40% disability criterion has been set to consider a person with a benchmark disability. This means that the person should have at least 40% disability to avail of the benefits under the RPwD Act.
What does 40% disability mean? How is it calculated? The government has a definition for a few disabilities. However, this percentage is not objective or universal. There is no set standard to judge different disabilities and the extent of their impact on a person's life, which means that the same person could get a different disability percentage from two different doctors.
Additionally, this percentage can be hard to define for all disorders and also tries to create a hierarchy of disability. The implication that a certain number qualifies one disability and not another is discriminatory, and this is ableism- which is often encountered by people with disabilities, either directly or indirectly.
We could take the example of the relapsing-remitting multiple sclerosis patients, who may be pain-free on some days and incapacitated by pain on others. Patients with inflammatory bowel disease sometimes have to undergo numerous life-changing surgeries that can have a significant impact on their quality of life. A patient with severe social anxiety may find it impossible to even venture out of their homes. Their conditions affect their social, academic, and professional lives and are chronically debilitating, yet are neither seen nor acknowledged. Aren't these people suffering from disabilities?
Shifting From Medical To Social Model Of Disability
This is where the medical model of disability falls short. It considers disability an individual medical problem, the treatment of which would ideally remove the other disadvantages a person may face. However, most disabilities have no cure or complete relief.
The social model, however, differentiates disability from impairment. It argues that impairment is the medical condition causing a loss of function, while disability results from social structure. It is not the medical condition that leads to a person's social exclusion; the inherent exclusivity in systems designed by and for abled people is to blame.
The World Health Organization says, "Disability results from the interaction between individuals with a health condition, such as cerebral palsy, Down syndrome, and depression, with personal and environmental factors including negative attitudes, inaccessible transportation and public buildings, and limited social support."
For instance, making buildings accessible only by stairs automatically excludes people using wheelchairs; the presence of a wheelchair-accessible ramp removes the impediment of disability. Barriers exist in physical spaces and how we are used to thinking of what "normal" is. Our perception of disability must be oriented towards universality, not just inclusion.
Addressing Disability - Matters Of Access
The Accessible India Campaign, under the Government of India, has ambitious plans to achieve universal accessibility in public spaces. It planned to improve accessibility in buildings, transportation, government documents, news broadcasts, and certified sign language interpreters.
Launched in 2015, its original deadline has been revised and extended a few times due to slow progress. The last deadline ran out in March 2023, and it has now been merged with the Barrier-Free sub-campaign under the Scheme for Implementation of the RPwD Act. While the literature addressing accessibility is well-constructed and thought out, its implementation lags severely.
There is no ultimate target for achieving accessibility – the work to make physical and online spaces more inclusive is continuous, and inclusivity must be the first step of planning and not an afterthought. It is not just buildings and transport; shared spaces online and mainstream technology must be made accessible, too. Assistive devices help PwDs navigate technology – and the government's role in providing it must also increase. For instance, all government websites should be fully accessible now, irrespective of whether a person is disabled or not – but aren't.
The Discrepancy In Disability Data: What Are We Missing?
According to the 2011 Census, 26.8 million – roughly 2.2% of the population – were living with disability in India, recognized under one of eight categories. However, the WHO reports that about 15% of the world's population is disabled, with 80% of them living in middle-to-low-income countries.
The World Bank estimates the number of people living with disability (PwDs) in India to be between 5-8% of the population (55 to 90 million people). The estimated numbers of people living with disability are starkly different from the ones reported by the government in India.
Underreporting disability has a direct effect on the state's efforts to help PwDs. Programs and schemes are created and budgeted according to the known prevalence. Underreporting can also skew data on literacy or employability among disabled people and cause us to miss the issues that are evident in the field.
Disability Certification And The Undelivered Promises
The certification of disability is a technical and often arduous process. The UDID, or Unique Disability ID, launched in 2016, is meant to ease this process and create more accessibility, but the on-ground stories of PwDs are different.
Despite having a disability certificate, they must repeat hospital visits for further evaluation. It is no surprise, then, that only 28.8% of people living with disability have a disability certificate, and just 21.8% receive government aid. In some cases, arbitrary amendments and repeated annual certification renewals create additional burdens for PwDs instead of allowing them the dignity the RPwD Act promises.
The issues of access to healthcare and social exclusion are manifold in rural areas, where over 70% of India's PwDs reside. Social stigma, superstition, and lack of social support create an environment where most people living with disabilities in villages find themselves dependent, with no vocational training, inadequate support systems, and a deplorable quality of life. Inadequate primary healthcare also means that more children in rural areas end up with preventable lifelong disabilities.
The RPwD Act promises non-discrimination, accessibility, a right to education, employment, and social security, and underlines the government's responsibility to ensure these rights. Though perfect on paper, in reality, the Act still has a long way to go.
The challenges PwDs face in accessing healthcare are manifold and multifactorial. The cost of healthcare, health needs not met even on hospital visits, and even negative perceptions from healthcare providers can lead to PwDs seeking alternative therapy. People with disabilities are five times more likely to develop diabetes and depression.
Access, attitudes, and policy are all challenges to universal healthcare. While the Unique Disability IDs are supposed to help continue healthcare and benefits for PwDs, progress has been glacial.
What can be done?
We discussed the personal and systemic adversities facing PwDs to bring them to light. Government schemes for education, employment, and pensions for PwDs cannot work in a vacuum.
We must start by changing how we perceive disability. It is not the impairment itself but society's perception that often limits social participation for people with disabilities.
True inclusivity requires universal access to workplaces, schools, and recreational spaces—not as an afterthought but as a foundational principle. This means reimagining and restructuring social norms so impairments do not translate into disabilities. Inclusion is not just about accommodating; it is about creating a world where barriers do not exist.
For this transformation to succeed, the public and private sectors must actively incorporate the lived experiences of people with disabilities into their policies and practices. On a personal level, we must reflect on and address the ableist choices we might make consciously or unconsciously.
Engaging directly with people with disabilities provides valuable insights into how we can create spaces that are genuinely accessible and accommodative. Healthcare, too, needs to expand its approach, moving beyond the traditional medical model to address the social dimensions of disability.
Lastly, improving data collection and reporting on disability is critical. A problem can only be effectively addressed when its scope and severity are fully understood. Underreported data not only skews the reality of the challenges faced by people with disabilities but also undermines efforts to secure their rights.
Without accurate information, we are left with a false picture, hindering meaningful change and depriving millions of the support and resources they deserve.
Bringing these issues to light will raise awareness constructively. Much remains to be done regarding policy implementation and social participation for PwDs. For our ideas of Universal Health Care to be truly universal, we need to do better.
Edited by Christianez Ratna Kiruba
Image by Janvi Bokoliya
