Even though the journey was tiresome when my toes touched the sand and water lapped on my feet, I felt free…as free as a bird," narrates Kavya Poornima Balajepalli about her first trip to the beach with her family after she acquired blindness due to a neurological condition called Idiopathic Intracranial Hypertension (IIH). Balajepalli, an architect, was in her final year of Bachelor of Architecture at the University of Mumbai when she received her diagnosis.
India's tryst with disability rights commenced in the 1980s. "That was the time when parents and caregivers of people with disabilities took the baton of disability rights in their hands and became the face of the movement. The most pressing question that gripped them was — what would happen to our children after us? That's what drove them to find solutions themselves," shared Padma Shri Javed Ahmad Tak, a social activist based in Jammu and Kashmir. It was not that activism around disability rights was not prevalent before that but it was happening in silos. People's understanding of disability was largely based on charity, wherein disability was understood as a social cause and not an issue that took a rights-based approach. "How could we even ask for our rights? There was no law backing us up," says Tak.
The 1980s: The Glimmer
The 1980s was a decade of awakening. On the global front, the United Nations declared the year 1981 as the International Year of People with Disabilities, and the following decade (1983-1992) was pronounced as the International Decade of Persons with Disabilities. A few years down, India saw the passing of the first act which addressed the issue of disability — The Mental Health Act of 1987. Even though the law was a step forward from the Indian Lunacy Act of 1912, it emphasised on the institutionalisation of people with mental illness. A few more years later, the Rehabilitation Council of India Act, 1992 came into force. The Rehabilitation Council of India was set up, regulating the training of professionals engaged in the rehabilitation of persons with disabilities.
The 1990s: The Dawn
"And then, just like that, in one single day, the Bill (only a piece of paper) became the law of the land. India's first ever disability rights legislation" wrote the late Javed Abidi in the book 20 Stories of Change as the Persons with Disabilities (Equal Opportunities Protection of Rights and Full Participation) Act, 1995, became a law. A disability rights stalwart who led the cross-disability rights movement in India, Abidi founded the Disability Rights Group (DRG) with eight others who together drafted the Persons with Disabilities (PwD) Bill. Some significant provisions in the said act were: recognition of seven types of disabilities, reservation of 3 per cent vacancies in government jobs and government educational institutions for people with benchmark disabilities, that is, those with more than 40 per cent disability, and infrastructural access in public places among others. The law also made it illegal for people with disabilities to be terminated or demoted due to an acquired disability. All in all, the Act prohibited discrimination based on one's disability!
The 2000s: Wave of Global Support
India being the first few countries to ratify the United Nations Convention on Rights of Persons with Disabilities (UNCRPD) in 2007 meant that the government was committed to ensure equitable rights to people with disabilities. The Convention, which was adopted by the United Nations on December 13, 2006, recognised disability rights as human rights. It sought to protect, promote and ensure equal rights and fundamental freedoms to all people with disabilities and upheld their inherent dignity. One of the significant characteristics of the UNCRPD was that it understood disability as an evolving concept.
Some of the most important steps towards inclusion have been taken by the Education sector, which is the only sector with data on children with disabilities under all 21 groups. The Right to Education (RTE) Act of 2009 focused on home-based education of children with disabilities, thereby taking responsibility for their educational inclusion, albeit not completely. Gaps remained — in the on-ground implementation of the Act. Who was going to what the Act mentioned, and how? "The enrollment of children with disabilities in school is still below 1 per cent because there's no clear demarcation on the role of the special educators nor is there any mention of reasonable accommodations and individualised support for children with disabilities in schools," says Radhika Alkazi, Managing Trustee of Astha, a Delhi-based non-governmental organisation that works on community-based rehabilitation of children with disabilities. While India may have ratified the UNCRPD, the paradigm shift in the perception of disability is yet to take place.
The 2010s: Age of Reform
The 2010s saw a host of changes and a dramatic shift in the climate of disability rights in the country. The most notable change came soon after India became a signatory to the UNCRPD in 2007. This set the disability activists and the community into motion to draft a bill along the lines of the UN Convention. Led by Abidi, the then Executive Director of the National Centre for the Promotion of Employment of Disabled People (NCPEDP), the Rights of Persons with Disabilities Act brought in new reforms for people with disabilities. Recognition of 21 types of disabilities including Multiple Sclerosis, blood disorders like Thalassemia, Hemophilia and Sickle Cell Anemia, and Parkinson's disease, setting up of special courts for matters related to disability rights, punitive action against atrocities and abuse against people with disabilities, increase in the reservation of seats in government jobs and higher education institutions to 4 per cent and 5 per cent, respectively, were some key characteristics of the new law. The act stood on the pillars of the social model of disability, according to which disability is a result of the interaction of the individual's impairment and the barriers in the environment.
The Accessible India Campaign was flagged off by Prime Minister Narendra Modi on the occasion of the International Day of Persons with Disabilities on December 3, 2015. The campaign, popularly known as Sugamya Bharat Abhiyan, was aimed at inculcating a barrier-free environment for people with disabilities, which meant that physical infrastructure, information and technology, and transportation had to be made accessible for people with diverse disabilities. Its deadlines of March 2020 and June 2022 were missed, but official data shows that while 48 of 50 per cent of government buildings were made accessible, only 8 per cent of government-run buses are accessible for people with disabilities. "Even though it mandates public buildings to be accessible, there's a lack of implementation of the campaign and awareness among building contractors and architects about the right standards. What good would a ramp be if those it is built for cannot use it? It is extremely critical to apply 'Nothing About Us Without Us' and consult people with disabilities in everything that concerns us," says Dr Tak.
The decade also witnessed the passing of the Mental Health Act of 2017, an amendment of the 1987 predecessor. The new act decriminalised suicide, prohibited the use of electroconvulsive therapy, took a rights-based approach, and empowered persons with mental health conditions to take decisions for themselves. While the MHA brought in some crucial revolutionary reforms and made mental healthcare affordable and accessible for all, reports suggest that its implementation has not been uniform across all states in the country. Maharashtra, for instance, had drafted its rules in the year following the passing of the MHA but had not published them.
The 2020s: Onward and Upward
In the year 2021, the Ministry of Housing and Urban Affairs issued the Harmonised Guidelines for Universal Accessibility a revision of the erstwhile Standards for Barrier-Free Built Environment for Persons with Disabilities and Elderly Persons, 2016. The new guidelines are a step ahead of the preceding rules, being based on the concept of universal accessibility. However, there is a lack of focus on the accessibility needs of people with psychosocial disabilities.
In the accessibility debate, digital accessibility seldom steals the show but it is a non-negotiable right for many. "While the virtual world empowers many — including persons with disabilities — it can also be disabling, particularly for individuals with visual disabilities due to the lack of digital accessibility. That's how the transition from a sighted person to a blind person was for me during the COVID-19 pandemic. Everything had switched to an online world overnight," says Balajepalli. "As technology continues to evolve and provide greater potential for interventions involving human participation, coupled with the effective implementation of the Rights of Persons with Disabilities (RPwD) Act and other prescribed guidelines and standards by various departments, the prospect of a better, more inclusive, and sustainable future that leaves no one behind remains a beacon of hope," adds Balajepalli, who is also a researcher working on accessibility in leisure and recreational spaces in Visakhapatnam.
The year 2023 saw some historic events that transformed things for generations to come. It was for the first time in the history of G20 that a standalone working group was established to address disability-related issues, giving disability rights the attention it deserves. This historic move becomes even more significant as it comes in the year of India's G20 presidency. "It was revolutionary to witness a dedicated panel under the Disability, Equity, Justice Working Group to discuss the challenges experienced by people with invisible disabilities. Be it in the Disability Law of the land or any organization working on Disability, the challenges of people living with invisible disabilities or chronic illnesses never found representation through a government body," says Dr. Anubha Mahajan, Founder, of Chronic Pain India, a charitable trust that works on universal healthcare for people with invisible illnesses and disabilities.
Another monumental change that came about after years of toiling around and reaching out to multiple insurance companies was that Arman Ali, the Executive Director of NCPEDP was finally able to get his wheelchair insured — the first-ever insurance of a wheelchair in the country! Insured by State Bank of India General Insurance, the incident is a glimmer of hope for all the assistive aid users in the country! People with disabilities have to rely on assistive aids to go about their regular lives; however, estimates from the World Health Organization show that less than 10 per cent of those who require assistive technology have access to it. The reasons are exorbitant costs, a dearth of financial resources, and an absence of training to handle these assistive aids. Plus, the constant anxiety of damaging these high-cost devices puts people with disabilities in a perpetual state of fear of not being able to afford them again — and thus, go down the spiral of dependence.
Even though reforms in the disability sector continue to take place, it is important to also have the right data for such provisions to actually be of help to their beneficiaries. The question on disability was included in the censuses from 1872 to 1931, disappeared from 1941 to 1981, and then reappeared in the census of 1981. This time there were three questions. The question, however, was dropped again in 1991. Persons with disabilities have been counted in censuses thereafter — the 2001 census included information on five types of disabilities while the one held in 2011 enumerated people under eight disability types. Even then, millions of people with disabilities remain missing from the official headcount, owing to a variety of reasons such as the lack of inclusion of certain conditions like invisible disabilities under the RPwD Act, a lack of awareness, training, and sensitisation among the enumerators, lack of acceptance of persons with disabilities by family members, and an all-encapsulating negative perception of disability.
On the 77th Independence day, seven decades since India broke away from the shackles of the British, here's a reminder that people with disabilities — the largest minority of the world — are still tied to the shackles of physical, attitudinal and systemic barriers, which prevent them from being active contributors, producers and participants. People with disabilities can no longer be an afterthought, they too are crucial stakeholders and equal contributors in matters of concern. Disability is a human rights issue that affects all people, it is imperative to include people with disabilities in everything — from politics and governance to leisure and entertainment. It just makes complete economic sense, for a country's holistic, developmental and financial growth. This must be remedied by 2047, in the 100th year since independence. There can be Nothing About Us (Indians), Without Us (Indians with disability)!
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