Who are WE

“The problem is not how to wipe out the differences but how to unite with the differences intact”. – Rabindranath Tagore

The WHO estimates suggest that the total global number of people with disabilities has already surpassed one billion (15% of the world's population)[1] with one-fifth of the estimated global total, or between 110 and 190 million people, experiencing significant disabilities.  As aging and the burden of chronic diseases increasingly affect developing countries (including India and China, the world’s most populous countries), this striking number will further increase. According to the 2011 census of India, the absolute number of people over age 60 had already reached 103.8 million, whereas the oldest-old population (over age 80) had reached 11.3 million. The same census counted around 27 million people with disabilities in India. According to a UN forecast, by 2050 there will be 323 million people over age 60 in India [2]. As aging is closely associated with increasing disability prevalence, India will face important structural and financial challenges related to the huge absolute numbers of people with disabilities requiring adequate social and health care. Expected increases in the number of people with disabilities also pose challenges for sustainable development, because disability in developing countries like India is closely related to the lack of education, extreme poverty, and social exclusion [3–5].  

International evidence on the prevalence of disability in developing countries is scarce, and often generates contradictory figures - India is no exception. Disability is usually defined as a physical or a mental health condition that limits a person’s ability to perform normal life activities. However, the prevalence figures largely depend on data sources and methodological approaches (definitions). So while conservative estimates peg 70 million Indians living with disability, the limited definition of disability in the 2011 census yielded only 27 million people in India with disabilities - i.e. 2.21% of the total population! The 2001 census estimate for India, which is based on an even narrower (medical) definition of disability, indicated that the total population with any kind of disability was 11.8 million, whereas the corresponding National Sample Survey (NSS) estimate was 26.5 million [7]. Large disparities are hidden behind the large number for India, with disability prevalence most pronounced in disadvantaged regions and disadvantaged socioeconomic groups. 

Despite the large discrepancy between these two figures, certain socio-demographic patterns of disability in India emerge when we examine the data from these diverse sources. For instance, previous findings clearly indicate that the prevalence of disability in India steeply increases with age [8]. Locomotor disability has been shown to be the most prevalent type of disability in India [8]. Rates of locomotor and hearing disabilities have been found to be much higher among Indian men than Indian women, while rates of seeing disabilities have been found to be higher among women than men [8–9]. Although having a disability is often associated with severe socioeconomic disadvantages and poverty, only a small fraction of the people with disabilities in India receive government assistance [5,10–13]. 

While the number of people with disabilities in India is substantial it is likely to grow - disability does not “go away” as countries get richer. Social attitudes and stigma play an important role in limiting the opportunities of disabled people for full participation in social and economic life, often even within their own families. Conceptual confusion has contributed to insufficient attention being paid to disability and its correlation with poverty, to paraphrase Amartya Sen. So while disabled people might find it harder to find well-paying jobs, (in what he calls an “earning handicap”) they may also require higher levels of income (he refers to this as "conversion handicap" - the assistance that disabled people may need to achieve everyday tasks, such as mobility or allowing children to attend school. Poverty statistics tend to look at poverty as if able-bodied and disabled people can do the same things with the same amount of money. The earnings handicap is far exceeded by the conversion handicap, not just for the individual involved but for families where there is a disabled person.

People with disabilities in India are subject to deprivation in many dimensions of their lives.  

• They are Poorer and have “conversion handicap”

  • Households with PWD one quarter less likely to report 3 meals a day year round

  • They are more likely to be in low income groups

• They have much lower employment rates and the gap to the general population has grown

• They often have low awareness of rights and entitlements

  • 94% of HH with disabled member have not heard of PWD Act in rural TN and UP

• They are subject to strong social stigma within community and families which is often internalized

• They are a heterogenous group (see table below on extent)

According to Census 2011 data , 207.8 lakh households have disabled persons in the country constituting 8.3 percent of the total households. Out of the total households having disabled persons, about 99 percent households are typical households, 0.4 percent are institutional and 0.2 percent are houseless households. Total households having disabled persons show an increase of 20.5 lakhs, from 187.3 lakhs in 2001 to 207.8 lakhs in 2011 (6.2 lakhs in rural and 14.3 lakhs in urban). Typical households increased by 2,02,4495, institutional households by 8,370 and houseless households by 13,560 during the decade 2001-11. Disabled persons in typical households increased by 48,19,382, institutional households by 65,895 and houseless households by 22,948 during the said decade. The burden of disability falls disproportionately across geographic regions and socioeconomic groups - this variation is not taken into account in Indian public policy. 

Absolute numbers of individuals with disability by age, sex, and urban and rural residence in India in 2011.

The prevalence of disability in India steeply increases with age [8]. Locomotor disability has been shown to be the most prevalent type of disability in India [8]. Rates of locomotor and hearing disabilities have been found to be much higher among Indian men than Indian women, while rates of seeing disabilities have been found to be higher among women than men [8–9]. Compared to a national average of 26%, 45% of Indians with disabilities are illiterate. Although having a disability is often associated with severe socioeconomic disadvantages and poverty, only a small fraction of the people with disabilities in India receive government assistance [5,10–13].

Age-standardized disability prevalence for Indian sub-populations and states (in %).

Descriptive statistics for outcome and explanatory variables across 640 districts of India in 2011(in %).

ASDP tends to be higher in districts where the proportion of older people is relatively high. The modeling results also show that socioeconomic disadvantages at the district level, such as poor household living conditions and a high proportion of the population who are members of deprived STs generally contribute to a higher disability prevalence. The notable exception is our finding that the proportion the population who are members of SCs has no relationship to district-level disability levels. The latter result may arise from a kind of ecological fallacy.

Proportion of disabled population by social groups in India

One important finding of the present study is that men appear to have higher levels of disability in terms of both absolute numbers and age-standardized prevalence. This result contradicts evidence from other countries that women have higher disability levels despite also having higher survival rates [1,24–26]. There are several possible explanations for the unexpected pattern observed in India. First, most of the previous studies that reported higher levels of disability among women were mainly based on reports of the ability to perform activities of daily living (ADLs) or functional assessments. These studies found that women tend to have chronic conditions that are less severe and less lethal than of the conditions men tend to have [27–28]. Thus, the sex pattern observed in this study might be attributable to the underreporting of milder forms of disability in the census. Second, the male disadvantage in disability prevalence is most pronounced at younger ages and reverses at older ages, when disability prevalence is especially high [29–31]. Third, even if we assume that the census officials did their best to count every individual with any disability condition, we cannot totally reject the hypothesis that the number of women with disabilities may have been underreported because of the stigma of disability and the tendency to overlook women. Although we have not found any study that addresses the under-enumeration of females in the 2011 census, a few studies have shown that the 1991 census under-enumerated females, especially marginalized females (widows, elderly women, etc.) [32]. Finally, because of gender discrimination in nutrition and health care, there is excess mortality among females under age five in India [16]. It is possible that female children with disabilities experience a double burden of discrimination, and are thus subject to a higher risk of death than male children or girls without disabilities. As expected, we found that in India, as in other developing countries, a higher female literacy rate is associated with a somewhat lower disability prevalence rate [19].

One education policy does not fit varied special needs

As things stand, 45% of India’s disabled population is illiterate, according to Census 2011, compared to 26% of all Indians. Of persons with disability who are educated, 59% complete Class X, compared to 67% of the general population.Despite the promise of universal access to education through the Sarva Shiksha Abhiyan (Education for All Movement), which promotes free and compulsory education for all children between the ages of six and 14, children with special needs form the largest out-of-school group in India. Some 600,000 (28%) special-needs children between six and 13 years of age are out of school, according to the 2014 National Survey of Out of School Children report, at a time when India has almost universal primary school enrolment.  

Among children with special needs, as many as 44% of children with more than one disability are out of school, and children with mental (36%) and speech (35%) disabilities are more likely to be out of school than those with other kinds of disability. A higher percentage of children with hearing disability, orthopaedic/locomotive disability and visual disability go to school, with only 20-30% failing to do so, according to this 2014 United Nations Educational Scientific and Cultural Organization report. Clearly, policies have to be more finely tailored to serve children across the disability spectrum. Experts also emphasise the need to go beyond providing just physical access.

Of persons with disability who are educated, 59% complete Class X, compared to 67% of the general population. Despite the promise of universal access to education through the Sarva Shiksha Abhiyan (Education for All Movement), which promotes free and compulsory education for all children between the ages of six and 14, children with special needs form the largest out-of-school group in India. Some 600,000 (28%) special-needs children between six and 13 years of age are out of school, according to the 2014 National Survey of Out of School Children report, at a time when India has almost universal primary school enrolment.

89% of school-going children with special needs in elementary school, 2% in higher secondary

Within special-needs children who are enrolled in school, the number drops steadily in higher grades, with a drop after grades VIII (48%, compared to 2.6% for all children) and IX (21%, compared to 6.8% for all children), according to the 2015-16 District Information System for Education data. As a result, although 89% of school-going children with special needs are in elementary school (grades I to VIII), 8.5% are in secondary school (grades IX to X) and 2.3% in higher secondary (grades XI and XII).

While the ministry of social justice and empowerment (MSJE) runs separate schools for children with special needs, the ministry of human resource development (MHRD) promotes an inclusive-education model where such children study in regular classrooms. Parents of children with special needs often find themselves having to choose between special schools and integration, with little guidance regarding which one is better for their child.

Children with disability who are able to beat all the odds stacked against them to complete education upto grade X face another hurdle: What course to choose for higher studies, given the widespread bias about what a person with disability can or cannot do.

As a result, students with disability have often had to fight to assert their right to study courses of their choice. 

Most of the content above is from Disability Divides in India: Evidence from the 2011 Census  & IndiaSpend.com 

Also see Disabled Persons in India A statistical profile 2016 - MOSPI