Opinion Omission of disability-related questions from NFHS-6 shows that disability remains misunderstood

The dropping of disability-related questions represents a failure to appreciate the various dimensions of disability and reflects the looming tendency to oversimplify disability and related issues

An understanding of the term “disability” has remained perceptibly nascent over the years. (File Photo)

Aarushi Malik

September 1, 2023 12:50 PM IST First published on: Sep 1, 2023 at 07:49 AM IST

In May, the government decided to omit disability-related questions from the sixth round of the National Family Health Survey (NFHS-6). This decision seems to have been taken discounting the fact that persons with disabilities constitute approximately 2.21 per cent of the country’s population — 2.68 crore people as per the 2011 Census. These numbers are under-representative today, owing not only to the population upsurge in the last decade but also since they represent only the seven defined categories of disabilities, apart from the broad general “others” category, that were included in the Census.

An understanding of the term “disability” has remained perceptibly nascent over the years. Despite the passage of a decade since the 2011 Census, the Government of India (Ministry of Statistics and Programme Implementation) report on ‘Persons with Disabilities (Divyangjan) in India — A Statistical Profile: 2021’ refers to only eight categories of disabilities. It fails to acknowledge and account for the 21 categories of disabilities recognised in law after the enactment of the Rights of Persons with Disabilities Act, 2016 (RPWDA).

The predominant tendency seemingly is to overlook the recognition and consideration of accommodation of the needs, perspectives, and basic rights of persons with disabilities. This is particularly true for less visible or “invisible disabilities”. The 2021 Statistical Profile report, which documented that nearly 24 lakh persons were affected by mental health-related illnesses, also failed to identify or acknowledge the concept of invisible disabilities. Only the symptoms which may accompany invisible disabilities were alluded to under the categories of “mental retardation”, “mental” and “any other”. The scope of these three categories, however, remains unclear as they differ from the legislatively recognised categories of “mental illness” and “intellectual disability”. This state of affairs persists despite estimates that as many as 20 crore people in India may be affected by psychosocial disabilities.

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The need for regular data collection is significant not only for meeting Sustainable Development Goals (SDGs) but also for compliance with the United Nations Convention on the Rights of Persons with Disabilities. Sections 28 and 27 of the RPWDA mandate the government to promote research and formulate schemes to safeguard and empower persons with disabilities. Section 25 calls for surveys, investigations, and disability-centreing research by the government.

Niti Aayog’s visionary blueprint, ‘Strategy for New India @ 75’, which delineates the government’s goals for 2022-23, recognises the challenges posed due to a lack of detailed data in drafting policies for persons with disabilities. Even in this forward-looking strategy document, there is a conspicuous void in measures for persons with invisible disabilities. Recent reports highlight the pressing need for inclusive measures to transcend beyond handrails, ramps, and tactile flooring, and become an integral policy aspect.

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One of the reasons for the omission, which is now under judicial scrutiny after being challenged before the Karnataka and Calcutta High Courts, was that “data won’t change so fast”. This not only contravenes Section 25(2)(c) of the RPWDA, which mandates the annual screening of all children, but it is also an oversight of India’s substantial birth rate of 16.949 births per 1,000 people. It reflects the persistent tendency to oversimplify disability and related issues.

NFHS-6, given the unparalleled sample size and extensive coverage of health data, presented a valuable opportunity to sensitise a wide audience, including surveyors and enumerators. The dropping of disability-related questions is questionable considering the 2030 deadline for realising the S D Goal, “Leaving no one behind”. There are concerns that disability right could be relegated to a secondary status, even in the Amrit Kaal, the heralded era of progress.

The writer is a Research Fellow in the Disability (Inclusion & Access) team at Vidhi Centre for Legal Policy. Views are personal.

# National Family Health Survey