underestimating disability

On some recent occasions, the prime minister has suggested the use of “divyang”, instead of “viklang”, for individuals with disabilities. Any change in nomenclature[now'meyn-klu,chu(language,शब्दावली)] is for the disability division (of the social justice and empowerment ministry) to work out, after consultations. However, underlying that nomenclature change, there’s a definition and mindset issue.

Globally, 15 per cent of the population faces some form of disability and there’s a UN Convention on the Rights of Persons with Disabilities (CRPD), which India signed in 2007. Since 1995, we also have a piece of legislation called Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act. What’s the percentage of the disabled population in India?

Census 2011 tells us the percentage of disabled is 2.21 per cent; 2.41 per cent of the male population and 2.01 per cent of the female population. There are higher (more than 2.5 per cent) levels of disability in states like Jammu and Kashmir, Sikkim, Maharashtra, Andhra Pradesh, Odisha and Sikkim. But even in these states, the percentage is less than 3 per cent. Logically, India can’t be that much of an outlier. This means we are underestimating disability. We aren’t defining and capturing it adequately[a-di-kwut-lee(sufficiently,पर्याप्तता)] . On censuses, part of the story is the following. From 1872 to 1931, all censuses asked a question on disability. No such question was asked between 1941 and 1971. A question was asked in 1981, dropped again in 1991. Questions were again asked in 2001 and 2011.

Comparability across 2001 and 2011 becomes unenviable[ún'en-vee-u-bu(difficult,कठिन)] because the definition of disability wasn’t identical. Census 2001 asked a question about five types of disability, Census 2011 extended it to eight — to capture “disability” better. Under the disability act, disability is defined as: One, blindness; two, low vision; three, leprosy-cured; four, hearing impairment; five, loco-motor disability; six, mental retardation; and seven, mental illness. Let me give a few examples to illustrate definitional changes. What happens if you have problems with only one eye or only one ear? You were disabled in 2001, not in 2011. What happens if you have a hearing aid? You weren’t disabled in 2001, but are in 2011. More specifically, the eight types of disability in 2011 are in: One, seeing; two, hearing; three, speech; four, movement; five, mental retardation (new category in 2011); six, mental illness (new category in 2011); seven, any other; and eight, multiple disability (new category in 2011).

The numbers I cited[sited[mentioned,उल्लेख)] earlier are based on this — 26.8 million disabled people, 18.6 million in rural India and 8.2 million in urban India. Within that, most people are disabled under the heads of seeing, hearing, movement and “any other”. Not astonishingly[u'stó-ni-shing-lee(surprisingly,आश्चर्यजनक ढंग से)], disability is a function of age, with a sharp increase after 60 years.

We are undoubtedly measuring it better, but we are still not measuring it properly. One reason is obvious. We still approach disability from a medical or pathological angle, focusing on a condition regarded as “aberrant[a-bu-runt(abnormal,असाधारण)]”. In contrast, in most developed countries, the focus has shifted to a social approach, highlighting institutional and social arrangements preventing those with impairments from leading normal lives. Consider the disability act. To be classified as “disabled”, you need a medical certificate, specifying the extent of the disability. To become “disabled”, your functioning must be 40 per cent or less than whatever is regarded as “normal”.

Take a look at the railway concession rules for disabled passengers to see how complicated we have made it. The NSSO (National Sample Survey Organisation) has also occasionally done surveys on disability. Since these are surveys and not censuses, let’s ignore these, although one should mention that NSS figures on disability are much higher — three to four times more. In the course of the Eleventh Plan (2007-12), the erstwhile Planning Commission suggested that the disability figure was 5-6 per cent of the total population. As life expectancy increases, because of its correlation with age, disability will also increase.

On censuses, no matter how good the training and irrespective of how many kinds of disability are covered, do you seriously expect enumerators[i'nyoo-mu,rey-tu(census taker,गणना करने वाला)] to be able to measure or capture disability? That’s unlikely. That’s precisely the reason I used the expression “question was asked”. The census essentially functions on the basis of self-reporting of disability and, sometimes, the question isn’t even asked. In all probability, the gap between true disability and measured disability is more for mental disability than for physical disability. We shouldn’t wait for Census 2021 to improve matters.

That’s the reason I wished to flag Kerala’s disability census of 2014-15, the first state to have such a census, started under the social security mission. This covers 22 kinds of disability — in movement, muscular dystrophy, chronic neurological disorders, multiple-sclerosis, hunched backs, dwarfism, blindness, seriously impeded vision, in learning, in speech, mental retardation, mental illness, autism, deafness, leprosy-free persons, haemophilia, thalassemia, sickle cell anaemia, cerebral palsy, epilepsy, deafness and blindness and multiple-disabilities. Sure, this covers many more kinds of disability, but I am still sceptical[skep-ti-ku(doubtable,संशयवाद)] . As far as I know, the census report is still in draft form.

However, broadly, this is the Kerala story — 2.2 per cent of the population is disabled; 11 per cent of households have disabled individuals. Above 60, 12 per cent of the population is disabled. These numbers may well be right and my only reason for scepticism is the low overall figure of 2.2 per cent. For Kerala, Census 2011 gave us a disabled population of 7,61,843. The Kerala census of 2014-15 gives us a figure of 7,91,998. Since the years are different, I’m not convinced that the Kerala census, laudable though the effort is, has corrected the underestimation sufficiently.

Courtesy: indian express

Download monthly pdf of December