The disabled do not count in the ‘sab ka saath, sab ka vikas’ – let alone the ‘sab ka vishwas’ – scheme of things. This has been reinforced by the sixth National Family Health Survey which will soon be underway.
The questionnaire finalised for the survey does not include anything related to disability. Even the half-hearted attempt to capture disability-related data in the previous survey has been abandoned this time. And the excuse, by all counts, is inexplicable.
“Disability is decided on medical certification. Our surveyors are not doctors and they cannot be checking medical certificates. People could not even understand the questions properly,” a principal investigator of the NFHS told the Times of India. The NFHS technical advisory committee asked for the question to be dropped instead of ‘giving inaccurate data’.
Blaming people for the inability of the surveyors to communicate properly with them reflects the surveyors’ insensitivity and lack of adequate training. This is what happens when people at the top do not understand the basics of the job entrusted to them and points to the larger question of lack of sensitivity among the bureaucracy and a vast section of policymakers.
What harm this would cause to a section of the population seems to be of little bother to them. This has been the bane of this government. It cares two hoots for the consequences, at times disastrous, of its reckless actions.
Welcome to “inclusive” India where you refuse to even capture data, let alone make policies based on it. The exercises of capturing data using the Census, National Sample Survey Organisation (NSSO) and the NFHS throw up different figures because of the different methodologies used by each agency to suit its purposes.
In the wake of the 2021 Census’s delay attributed to various reasons, we only have the 2011 data to rely upon. Even these figures stand disputed. Disability activists have not just questioned the methodology but also the lack of adequate sensitisation of enumerators, which reflects in the skewed data put out by the 2011 census. While Census 2011 identified the disabled population to be 2.21%, the NFHS-5 puts it at 1% .
To ensure that the anomalies of the last survey are not repeated, disability rights activists met officials in the National Health Systems Resource Centre and followed it up with the nodal department, the Department of Empowerment of Persons with Disabilities (DEPwD).
Chennai-based disability rights activist Smitha Sadasivan said that in an online meeting conducted on March 9, 2023, the activists had asked for “strengthening the questions on disability and enhancing disability data through the NFHS”. All these are in vain, she bemoaned, now that disability has been abandoned altogether.
Given the absence of persons with disability from public spaces, which lead to the coining of the term “invisible millions”, the common perception is that they do not constitute a sizable portion of the population. Their invisibility is for a variety of reasons including inaccessibility of public spaces and utilities.
Be that as it may, the fact is that none of these figures reflects the actual situation. The WHO estimates that “1.3 billion people – about 16% of the global population – currently experience significant disability. This number is increasing due in part to population ageing and an increase in the prevalence of non-communicable diseases”.
In the backdrop of the COVID-19 pandemic, which had a more severe impact on persons with disability, this exclusion from the questionnaire is telling. It is all the more shocking given the fact that the Sustainable Development Goals (SDGs) require disaggregated data on disability to gauge progress, not to speak of the mandates of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) and the Rights of Persons with Disabilities (RPWD) Act, 2016.
Even the Unique Disability ID (UDID) project, which could have provided more reliable data, is moving at a very slow pace. According to UDID’s website, the project is being implemented with a “view of creating a National Database for PwDs, and to issue a Unique Disability Identity Card to each person with disabilities. The project will not only encourage transparency, efficiency and ease of delivering the government benefits to the person with disabilities, but also ensure uniformity…”
However, data on the implementation of the project is worth checking. According to the 2021-22 Annual Report of the DEPwD, nearly 68,00,000 e-UDID cards have been generated as of January 1, 2022. This is against 1,74,25,905 disability certificates issued till that date.
A large chunk of persons with disability identified by the 2011 census, estimated to be 2.68 crore, have neither been given certificates nor cards, depriving them of all rights and entitlements as citizens of the country.
The nine years of the BJP-led government at the Centre have witnessed unprecedented noise around disability. It was during this time that the RPWD Act was passed, though some of the provisions contained in the Bill introduced by the outgoing UPA government at the fag end of the Winter Session in December 2013 were diluted.
The passage of the Act, as its preamble says, is “to give effect to the United Nations Convention on the Rights of Persons with Disabilities and for matters connected therewith or incidental thereto”. India had ratified the UNCRPD in 2008. Nevertheless, the government has refused to look at other laws that discriminate against persons with disability. As with other sectors, it has been more on rhetoric than actual action.
Their hypocrisy is also revealed by the fact that after the last occupant of the Chair of the National Trust (instituted under an Act of parliament) had to put in her papers following the outcome of the 2014 elections and the position has been left to be filled by bureaucrats.
The offices of the Rehabilitation Council of India and the Chief Commissioner of Persons with Disabilities are without full-time occupants and have to make do with officiating bureaucrats undermining the independence of all these three important bodies.
This, while superfluous and patronising terms like “divyang” have been thrust upon us. Meanwhile, persons with disability continue to be abused and ridiculed, with the prime minister himself enjoying poking fun at his opponents by alluding to them as “pappu”, “lame”, “blind”, “deaf” etc.
Such being the scenario, it is no wonder that the NFHS committee didn’t find it odd to drop questions on disability rather than trying to sensitise its enumerators.
The author is the General Secretary of the National Platform for the Rights of the Disabled.