The struggle to be counted as disabled

Good morning! In May this year, the government decided to omit disability-related questions from the sixth round of the National Family Health Survey (NFHS-6) Per The Indian Express. according to the the last record census in 2011, persons with disabilities make up approximately 2.21% of the country’s population. There has been no official data since. The Intersection delves into the implications of not having a census. Also in today’s edition: we have curated the best weekend reads for you.

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Twelve years ago, when Apoorv Kulkarni’s* family opened the door to a census enumerator, they didn’t expect to be doing part of his job for him.

After the initial round of questions, they asked the enumerator why he had not asked if there was someone with a disability in their household. Kulkarni, 36, has lived with severely-compromised vision since childhood due to a genetic condition.

Your house looks nice, you seem like a nice family, we didn’t think there would be anything like that here, Kulkarni recalls the enumerator saying.

Priya Varadan had an identical experience. An enumerator who visited her New Delhi home in 2011 skipped the question on disability in her household. When asked why, he replied that he had seen her and decided it wasn’t necessary. Had she not pushed the enumerator to ask specific questions, she too might not have been counted as disabled. Varadan has cerebral palsy, a condition that affects a person’s ability to move and maintain balance.

Today, Apoorv Kulkarni, now based in Gurgaon, is the head of research at OMI Foundation, at the think tank’s Centre of Inclusive Mobility. Priya Varadan is part of a network of disability rights advocates and works with the Diversity And Equal Opportunity Centre. Per law and government policy, they are persons with disabilities (PwD), as are millions in the country. Yet, their identities, dignity, and rights to necessary welfare measures remain tangled in confusing percentage points, questionable survey designs, and state apathy.

How many disabled people are there in the country? It seems India does not want to know.

Convolution

The Delhi Declaration of the G20 Summit is widely seen as a win for India. Not entirely so by the Disability, Equity, Justice working group of the Civil20, an official G20 engagement group for civil society. Disability rights found no mention in the Declaration.

"It does not make sense from an economic perspective. Global estimates suggest that excluding disabled people from the economy costs each country [a loss of] 7% of their GDP,” says Nidhi Ashok Goyal*, India coordinator for the DEJ group and a Civil20 steering committee member.

“While the Delhi Declaration focuses on digital infrastructure, by not addressing accessibility for disabled people, it rolls back their rights. For example, if an earning-disabled person has to rely on someone to access banking infrastructure, they lose their sense of privacy and independence,” she adds.

That is the tip of the iceberg. The question of how to count the population of disabled Indians in itself is a complicated one.

In May 2023, activists found out that the National Family Health Survey-6 (NFHS) had dropped the questions on disability altogether. Alarmed at this exclusion from a crucial national databank, they went to High Courts in various states and petitioned the Centre to not drop disability from the NFHS. Despite their attempts, and the Tamil Nadu High Court questioning the government, NFHS-6 started in June without the disability questions.

In late July, the Parliamentary Standing Committee on Social Justice and Empowerment reprimanded the Centre for not having any accurate count of PwDs in the country. It asked that all available resources be used to estimate this population. In its answer in Parliament, to the press, and indirectly to the activists’ network, the government stuck to banking on the next Census, which was supposed to be in 2021 but has been pushed to 2024, to get this count.

The Indian Institute of Population Sciences (IIPS), which implements the NFHS, has suggested that given the resources and manpower from its overseeing ministry—the Ministry of Health and Family Welfare (MoHFW)—it’d be happy to carry out a separate survey designed to best capture disability in India.

The NFHS is over 20 years old, and its current version is 1,000 questions long. Usha Ram jokes that it weighs five kilograms on paper. Ram heads the institute’s Department of Public Health & Mortality Studies.

“The mandate of the NFHS has been and will be to capture information on maternal, child, reproductive, and sexual health of the population,” Ram tells The Intersection. She calls all other data points—domestic violence, women’s empowerment, and briefly, disability, for example—ancillary information. Since the survey reaches seven million households in the country, it ends up gathering such ancillary information to better understand not just demographic phenomena, but also the utilisation of maternal, child, reproductive and sexual health services and interventions.

Ram also disputes the claims about lack of field training, insisting that NFHS investigators undergo a three week, “intensive” residential training from experts in various fields, and that they are supervised once on the field. “If an investigator can ask a household about domestic violence, contraceptive use, and tuberculosis, then how can they not ask about disability?” she questions.

But NFHS-5, which accounted for 2019-2021, recorded the disabled population in India as 1.1% of the total population. This was an obvious and severe undercount: the 2011 Census had recorded the disabled population as 2.21% of the total population, in itself seen as a low estimate. In 2018, this figure was supported by the National Sample Survey Organisation’s survey of Persons with Disability. Meanwhile, a 2011 World Health Organisation (WHO) report estimates that 15% of any given population will have some form of disability.

The confusion doesn’t end here. In 2011, the Census counted seven forms of disability. Soon, in 2016, the newly-legislated Right of Persons with Disability Act, which replaced the 1995 Persons with Disability Act, recognised 21 forms of disability. Yet, for simplicity’s sake, the NFHS-5 also counted seven forms of disability in its attempt to capture its prevalence.

Percolation

Here’s why data sanctity, or the lack of, matters.

India has a Unique Disability ID (UDID) card system—an online-only portal to register as disabled—to ensure that PwDs do not miss out on welfare measures. In fact, the Centre has made the UDID mandatory to avail any central government scheme for the disabled, and for them to acquire the crucial disability certificate.

But since January 2017, the government has issued only 94.09 lakh UDID cards. Data submitted to the Parliament in 2021 recorded a highly-uneven distribution pattern: for instance, 11,11,418 cards were issued in Andhra Pradesh compared to nine in West Bengal, between January 2017 to July 2021.

This glitch in the system, so to speak, is affecting English-speaking people in metros with access to the internet. What, then, of the less fortunate?

Consider Delhi-based Kokil Gupta, who struggled for a year to get her younger son, S**, a disability certificate to make the grade 10 board exams accessible. S’s IQ is 75, which is understood to be ‘borderline’ or close to being intellectually-disabled.

Last year, his school counsellor shared the UDID portal link with Gupta, who hadn’t heard of it earlier. She registered, but is still waiting for a card or any government advice on the next steps. This year, the counsellor advised her to get S evaluated at their government district hospital for the disability certificate. The hospital, Dr. Baba Saheb Ambedkar Medical College and Hospital, told Gupta they did no such evaluation. Then its psychiatrists said S could not qualify for the certificate as his IQ was not below 60.

Finally, a frustrated Gupta paid Rs 5,000 for an evaluation at a Fortis Hospital branch last month. The certificate was accepted by the CBSE board, but it has no other value as it is not a government document.

India’s Rights of Persons’ with Disability Act mandates that the government provide for disabled children, especially in the crucial developmental years, before they turn five. The Centre is supposed to ensure that disabled women and children “enjoy their rights equally with others”. That disabled people have access to appropriate information regarding reproduction and family planning, and that no person with any disability is subjected to any medical procedure which leads to infertility without free and informed consent, for example.

Central and state government schemes offer pension, reservations in education and employment, financial assistance for entrepreneurial ventures, added benefits under the public distribution system, help getting assistive devices, etc. A person with a disability certificate can avail of these. But as we glimpsed in Kokil Gupta’s case, the gap between the number of people who need such services and what’s provided is huge.

If bureaucrats are designing schemes keeping in mind three million disabled people when there are nearly 30 million disabled in India, says Tony Kurian, the schemes are bound to fail. Kurian is a sociologist, a PhD candidate at IIT-Bombay studying Indian agriculture, and a disability rights advocate who also works on the intersection of disability and technology.

It doesn’t help that bureaucrats argue there simply aren’t that many disabled people in their district or state to design more inclusive schemes. In the absence of granular data, it is difficult to persuade them otherwise.

As an example, Apoorv Kulkarni cites the 2021 Convergence Energy Services Ltd (CSEL) initiated Grand Challenge, which encouraged nine major cities to ply electric buses. Most cities acquired high floor buses, which are difficult for people with mobility issues to access. City authorities, says Kulkarni, thought there just weren’t enough disabled people in the area to justify buying more expensive low floor buses.

The crux of the matter

In the face of bad data, authorities seemed to have thrown up their hands and decided to drop the question altogether for NFHS-6. An IIPS official who spoke to The Intersection on condition of anonymity said they cannot afford to keep or pursue bad data because the NFHS is always in the spotlight and used substantially for policymaking. At the same time, they added that field investigators were not medically certified to understand disability because it’s a “complex issue”.

The activists’ network has publicly, and in meetings with government officials, offered support in better training field investigators. They have brought attention to a globally-accepted, more efficient way of capturing disability in surveys, the Washington Group Short Set on Functioning. They argue for strengthening the NFHS, instead of losing this chance of intersectional pan-India data and depending on outdated Census data.

All this brings us to the fundamental question: what is disability?

A modern understanding recognises that disability results from the interaction between a person and surroundings that are ill-equipped to meet the person’s needs. This is an evolution of the 20th century view of disability as a medical problem in need of a cure. Such a lens allows people to understand how disability intersects with all other socioeconomic conditions. Every disability rights advocate and researcher one spoke to pointed out that a survey like the NFHS, which gathers all data in one place, would allow for better correlation of disability and other demographic trends.

“We know that in most Indian households, women eat last. They have less access to nutrition than men do,” Kulkarni says. “We also know that in many such households, the disabled eat last.” NFHS data could help map out the nutritional needs and gaps of disabled women, for one.

Kulkarni adds that enumerators and field investigators also look for telltale markers of poverty before deciding to ask about disability. For Tony Kurian, a better understanding of the correlation between disability and poverty is a must for efficient policymaking. That’s because the disabled are often found at the bottom of the economic pyramid.

“Is that because the poor have an inherent tendency to acquire disability, or because the disabled cannot easily find employment and slip into poverty? We don’t know,” he says. Do policymakers first target poverty indicators such as nutritional profiles, or gaps in employment?

According to Chennai-based activist Smitha Sadasivan, the NFHS could also throw light on the access of disabled people to contraception after marriage. Better data will help government workers such as ANMs (auxiliary nurse midwives) or ASHAs (accredited social health activists) to reach disabled people in their areas to provide sexual and reproductive health services if the latter could not come to them. Even government bodies such as NITI Aayog depend on good disability data to track India’s progress to fulfil the Sustainable Development Goals (SDGs). An undercount in India, Sadasivan says, affected global estimates.

The state works through enumeration. To be counted, especially as a specific identity, is a political victory for a community and for an individual. “It is a way to stake political identity, to stake a claim on the state and on its welfare measures,” Kurian underlines. For a disabled person, or anyone from a marginalised group, your claim to anything the state offers is only if you get counted.

*The interviewees are related

**Name withheld as S is a minor

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