Full Paper

Social and Spatial Disparities in Disability in : An Investigation by

Definition Difference

1 2 Priyanka Yadav and Ajit Kumar Yadav

Abstract

The present paper focuses on critical analysis of definitional and numerical difference

between the two Census 2001, 2011 and the prevalence by different types of disability

calculated from NSS, 2002. This paper presents a critical comparative study between the

disability definitions in the Census and the NSS 58th round, 2002. This paper also documents

the effect of definitional differences in the prevalence estimates of disability from the Census

and National Sample Survey. Keeping these definitional gaps in mind, future disability

surveys can be designed so that the estimates are similar and uniform at the National level.

Introduction

Disability as a potential measure of health status of a population has not received much attention, and studies considering both fatal and non-fatal health outcomes for measuring the health status are limited and have not been potentially explored yet at national and sub- national levels in

India. In an era where inclusive development is being emphasized as the right path towards sustainable development, focused initiatives for the welfare of disabled persons are essentials.

There is a need for strengthening disability statistics in the country. According to WHO estimates, the total global number of people with disabilities is over one million and about

15% of world population suffers from some form of disability. There are various definitions of disability given by various international organizations and surveys.

1 Doctoral Fellow, Centre for the Study of Regional Development, Jawaharlal Nehru University, , India, Email: [email protected]

2Doctoral Fellow, International Institute for Population Science, , India Email: [email protected]

According to World Health Organization (WHO) “disability is a complex phenomenon, reflecting an interaction between features of a person’s body and features of the society in which he or she lives.” The official prevalence of disability was estimated as 2% in the year 2001-2002 but was found to vary when estimated from two of the most reliable sources of data on disability: Census Report of India, 2001 and National Sample Survey, 58th round,

2002 (Mitra and Sambamoorthi, 2006). Thus there was an obvious gap in the definition and categorization of disability in the NSS and Census. Mitra and Sambamoorthi, in 2006 pointed out some of the basic definitional differences between the various types of disability on which data has been collected by both NSS and Census. As for example, in their paper they discussed that there was a difference in the number of people who were visually disabled: according to the Census report, 2001 there were 10.6 million visually impaired persons whereas from NSS, 2002 the number came down to 2.8 million persons. This was due to the ignorance of people who had no vision testing done prior to the survey by the National Sample Survey,

58th round. However, the paper by Mitra and Sambamoorthi, 2006 gives us an overview of these differences in the year 2001-2002. There has been some changes in the definition of disability and its types between the Census Surveys conducted in 2001 and 2011. The last survey on disability conducted by the National Sample Survey Organization was its 58th round in 2002. This particular round had significant numerical and definitional differences with the

Census of India survey conducted in 2001. There will be obvious numerical difference in disability count between NSS 58th round and Census, 2011 due to the nine year time gap.

Nonetheless, the current paper aims to investigate the development and differences in the disability definitions in the three most important and widely used sources of disability data over the time period of 2001 to 2011. The paper also shows the social and spatial disparities in disability in India in context of definition differences by major data sources.

However, data sources and methodological approaches (definitions) play a major role in showing the prevalence of disability. The existing rough estimations from international agencies such as the UN or the World Bank suggest that 10–12% of the global population have at least one disability . On the other hand, the WHO World Health Survey and the WHO Global Burden of Disease study provide higher figures (16–19%). According to the WHO World Health

Survey estimation for 2002–2004, disability prevalence in India is much higher (25%) than the global average. Although the percentage of people with disabilities is lower in India than in neighboring Bangladesh (32%), it is almost twice as high as in and Sri Lanka. It has been acknowledged that the WHO WHS and other survey-based estimates suffer from important deficiencies related to coverage, representativeness, exclusion of most vulnerable groups, and reporting biases; and that these deficiencies may seriously distort international comparisons.

There is a wider spatial variation in disability. The integration of GIS with the prevalence of disability statistics can serve the dual purpose of initiation and assessment of public health programmes. The states of concentration of disability can be seen at a glance, and a quick comparative assessment of states which need urgent intervention programmes can be identified.

Once states which need public health intervention on priority basis are earmarked, critical paths for distribution of health facilities and services can further be taken up in a manner to optimize time, manpower and resources. However, there are some studies on disability prevalence in India and states but no systematic study of the disparities in the prevalence of disability in social and spatial context by definitional difference have been conducted. Thus we believe that this study adds important information to the existing literature.

MODELS OF DISABILITY:

Models are an useful framework which gain an understanding of the disability issue. Disability is a multidimensional and dynamic concept, therefore models have been developed to easily explain , measure, interpret the factors associated with disability. Disability involves the interaction of a person health condition, its personal characteristics , the physical environment and the social environment.

There are number of models of disability which have been defined over the last few years.

The four major models are listed below:

The social model: It perceives disability as a socially created problem and not of the characteristic of individual, and it requires social change. This perspective states that the limitations are caused due to rigid physical or social environment. The model gives a clear picture that the disability is the result of societal perception rather than barriers to participation of life. The person with disabilities faces discrimination and segregation similar to those of oppressed minority groups. It advocates for equality among individual by altering society’s perception.

The Medical model - Health is defined by absence of disease. It considers disability as the problem of the individual which is directly caused by a disease, an injury or other health conditions. Individual with disability are deviated from a normal healthy life. Treatment and interventions can move a disabled individual from a diseased or unhealthy state towards a normal or healthy state. This model ignores the role of the individual and their society.

Rehabilitation has an important role to play in bringing the person back or close to the normal state.

The Nagi model - It was created by Saad Nagi in 1965 to study the disability for the United

States Social Security Administration. This model is also known as the Disablement Model or

Functional limitation paradigm. The elements of Nagi model are:- The Active Pathology- describes an interruption in the normal body process which leads to deviation from the normal state. It leads to impairments, which are anatomical or physiological abnormalities or losses.

Impairment - complete loss, or damage or interruption in the normal body structure or system. It is a casual chain leading to disability.

Functional limitation – restriction on individual performance in its normal daily activities. Nagi

(1991) defined functional limitation as “an inability or limitation in performing socia y defined roles and tasks expected of an individual within a socio-cultural and physical environment”.

Disability - inability to do something. It is physical or mental limitation in the context of state.

It promotes social and cultural relativistic view of disability.

The International Classification of Functioning- The WHO developed the International

Classification of Impairments Disabilities and Handicaps (ICIDH) in the early 1980s. In 2001 it was revised and named as International Classification of Function and Disability (ICF). The ICF framework describes changes to health as the dynamic interaction between the health condition and contextual factors. ICF is an integration of social and medical model. “ICF attempts to achieve a synthesis, in order to provide a coherent view of different perspectives of health from a biological, individual and social perspective” (World Health Organization, 2001)

The ICF Framework use two qualifiers to record and rate the severity of the problem. It gives two scales of 0–9 for assessment. The Performance Qualifier- it measures the individual’s performance in the current environment in which they live. The Capacity Qualifier- measures an individual’s ability to execute tasks or actions in a standardized or uniform environment to neutralize the impact of different environments on the abilities of the individual and to see the true ability of the individual to perform the task without assistance or accommodation.

MEASURES OF DISABILITY:

There are different ways to measure disability. The three measures are listed below:

1. Impairment – it defined as a significant deviation or loss in body function or structure.

It can also be explained as long lasting health condition that eliminates personal ability

to see or hear, limit personal activity or mental activities. Some examples a r e :

blindness, deafness, mental retardation, stammering and stuttering, complete or partial

paralysis.

2. Functional limitation – restriction on individual performance in its normal daily activities.

It includes difficulty in seeing, walking, hearing, speaking, climbing stairs, lifting and

carrying, irrespective of whether the individual has an impairment or not.

3. Active limitation- defined as a difficulty an individual have in executing daily living

activities such as bathing, dressing. It also include participation restriction which limits

some major life activities such as going outside the home, work or housework for

working age persons, and school or play for children. Discussion:

In this study, we examined the social and spatial disparities in disability in India in context of definitional difference. In general, Census and NSSO both classified types of disability in the following areas: Locomotor, visual, hearing, speech and mental. Despite of similar sequence in the identification of disability types, there are variations in estimation of disability prevalence across the two data sets. Result of fig 1 shows that, the NSS rates of disability is higher for movement while the census disability rates was higher for visual disabilities. The largest difference in prevalence estimation can be seen in context of Visual disability. Visual disability prevalence is estimate 14% in the NSS while it is 49% according to census 2001. In case of estimation of mental disability, both the data sets provide almost similar result (10%

NSS, Census 2001). This result is surprising as both NSS and Census use different definitions for mental disability. The definition of mental disability is also based on general activities of daily living limitation in the census while it refers to several specific functional and activity of daily living limitations in the NSS.

In context of social group, According to census 2011, disability prevalence can be seen equal among SC and ST at India level (table. 2). Some states had higher prevalence of disability

Sikkim (4.8%), Jammu and (3.5%), Rajasthan (3.1%), Kerela, Odisha (3%) on the other hand there are some states which show disability prevalence lower than the national average, Daman &Diu(0.9%), , (1.1%), Manipur, Meghalaya,

(1.2%). Among the SC higher prevalence can be seen in the state of Sikkim (8.6%) while

Mizoram had the lowest (0%). In case of ST, disability prevalence was higher in Sikkim (3.9%), while lowest in Gujarat, Bihar and Manipur(1%).

Social Group of Disabled person fig.2 NSSO survey (2002) while studying the social group, it would be interesting to find out whether distribution of disabled people by social groups was different from that for the general population. In the rural areas, the distribution of social groups in general households and households reporting disability was found to be more or less same. In the urban sector, the households reporting disability had a relatively higher percentage share of SC (18%) and OBC (38%), and a relatively lower percentage in the category “others”

(41%) households in comparison to general households for which the respective percentage share of these social groups were 15%, 33% and 48%. Among the disabled persons, 7% were

ST, 22% were SC, 41% belonged to OBC and 30% were categorized as others. In the rural sector, only 26% of the disabled persons belonged to the social group “others”, whereas in the urban areas 41% disabled were from “others”. Thus the distribution of disabled persons by social group was markedly different between the rural and the urban sector, but there were very little differences between the two sexes as revealed in fig. 2.

Fig. 3 in this comparison of disability prevalence by two census and last NSS round of disability shown, the proportion of disabled persons in the population was found to be relatively high (more than 2%) in H.P (2.6%) in the case of both the census also, Orissa

(2.5%) but in census it is higher (2.8%) in 2001 and (3%) in 2011 census, Kerala (2.2%) but in census it is higher by 2.7% and 3% in 2001 and 2011 census respectively, and Punjab (2%) while it was significantly higher by both censuses, Assam (1.0%) by NSS but in case of census it is higher by (2%) and (1.6%) 2001 and 2011 census respectively, (1.2%) but in census it is higher, Rajasthan (1.5%) etc. However, in almost half of the states the prevalence was in the range of 1.7% to 1.8% by NSS but in case of census it is higher in most of the states. The pattern of disability prevalence in the major states as observed from NSS

2002 results were quite different from the pattern observed from Census 2001 and 2011 results, which had lesser dispersion with higher central tendency as against higher dispersion and smaller central tendency for NSSO 2002 results over the major states. It look like that the overall disability prevalence estimation by Census and NSS are not comparable. Census does not have an over a l l definition of disability whereas in case of NSS it have, which make difficult in comparing the estimates. The census overall disability prevalence is the sum of prevalence estimates for the five disability types.

Disability is an important public health problem in India. Though there are some authorities who believe that in the community disability is a minor problem and do not require any intervention. In reality, disability is a social problem and the disabled population is a liability to the society.

However, NSSO data do not give full prevalence of disability in India. The major reason is that the data is collected by health workers who have limited knowledge and lack of training in disability assessment. Both NSSO and Census are dependent on conceptual framework to assess disability.

Conclusion: Disability definition is always a matter of concern in India, India first time after independence conducted complete enumeration on disability in the census of 1981; is also a point of deviate and discussion, RGI again in the next census 1991 did not gave much importance on the disability issue and leave schedule of disability prevalence; and it was started again in 2001 and continues till now by census of India on the pressure of ministry of social justices and empowerment in India. Ministry of statistics and programme implications also give the prevalence of disability in India at regional level with socio-economic chataretristics, but comparison of NSS and census disability prevalence is a huge variation in

India and states with different types of disability. Till date there is no such evidence which clearly shows that which one is correct. It is necessary to investigate from time to time the quality of disability data given by RGI and NSS and should be modified or WHO measurement can be used to collect data for disability prevalence. The reliability and accurateness of data also depend on duration of survey and complete enumeration. In the elderly population, large number of whom may be functionally disabled, are usually not identified so by the households and therefore not reported as disabled in any household level enquiry, the way the disability questions are asked. There are other socio-cultural reasons including social stigma attached to disability which may account for low reporting of cases.

Even the 11th five-year Plan document had noted that, “it can be reasonably argued that persons with disabilities constitute anywhere between 5 to 6 per cent of our total population”.

Thus, the official estimates can be considered as the lower bound estimates with a strong bias towards more serious disabilities only.

Table 1: Definitional difference in Census and NSS in Different types of Disability

Type of disability De finition by Ce nsus 2011 De finition by NSSO 2002 One eyed persons were treated as disabled at Census 2001. By visual disability, it was meant, loss or lack of ability to execute tasks At the Census 2011 such persons have not been treated as requiring adequate visual acuity. For the survey, visually disabled in-clued disabled in seeing. At the Census 2011 enumerators were (a) those who did not have any light perception - both eyes taken together In Se e ing asked to apply a simple test to ascertain blurred vision. At and (b) those who had light perception but could not correctly count fingers Census 2001 no such instructions were given. of hand (with spectacles/contact lenses if he/she used spectacles/

This referred to persons inability to hear properly. Hearing disability was ‟ judged taking into consideration the disability of the better ear. In other words, if one ear of a person was normal and the other ear had total hearing loss, then the person was judged as normal in hearing for the purpose of the survey. Hearing disability was judged without taking into consideration the Persons using hearing aid have been treated as disabled at use of hearing aids (i.e., the position for the person when hearing aid was Census 2011. They were not treated as disabled at the not used). Persons with hearing disability might be having different degrees Census 2001. of disability, such as profound, severe or moderate. A person was treated as

having „pro-found‟ hearing disability if he/she could not hear at all or could In He aring Persons having problem in hearing through one ear although only hear loud sounds, such as, thunder or understands only gestures. A the other ear is functioning normally was considered having person was treated as having severe hearing disability if he/she could hear hearing disability in Census 2001. But in Census 2011, such „ ‟ only shouted words or could hear only if the speak-er was sitting in the persons were not considered as disabled. front. A person was treated as having „moderate‟ hearing disability if his/ her disability was neither profound nor severe. Such a person would usually ask to repeat the words spoken by the speaker or would like to see the face of the speaker while he/she spoke or would feel difficulty in conducting conversations.

This referred to persons‟ inability to speak properly. Speech of a person was judged to be disordered if the person‟s speech was not understood by the Definition was made clearer in Census 2011 to record listener. Persons with speech disability included those who could not speak, persons with speech disability. For instance, persons who “ spoke only with limited words or those with loss of voice. It also included speak in single words and are not able to speak in sentences In Spe e ch ” those whose speech was not understood due to defects in speech, such as was specifically mentioned to be treated as disabled. stammering, nasal voice, hoarse voice and discordant voice and articulation de-facts, etc.

Specific mention of the following was made in the definition for Census 2011: A person with - (a) loss or lack of normal ability to execute distinctive 1. Paralytic persons activities associated with the movement of self and objects from place to 2. Those who crawl place and (b) physical deformities, other than those involving the hand or 3. Those who are able to walk with the help of aid leg or both, regardless of whether the same caused loss or lack of normal 4. Have acute and permanent problems of movement of body was considered as disabled with locomotors disability. joints/muscles – Thus, persons having locomotors disability included those with (a) loss or 5. Have stiffness or tightness in movement or have absence or inactivity of whole or part of hand or leg or both due to loose, involuntary movements or tremours of the In Movement amputation, paralysis, deformity or dyes-function of joints which affected body or have fragile bones his/her “normal ability to move self or objects” and (b) those with physical 6. Have difficulty balancing and coordinating body deformities in the body (other than limbs), such as, hunch back, deformed movement spine, etc. Dwarfs and persons with stiff neck of permanent nature who 7. Have loss of sensation in body due to paralysis, generally did not have difficulty in the normal movement of body and limbs Leprosy etc. were also treated as disabled. 8. Have deformity of body like hunch back or are dwarf.

Persons who had difficulty in understanding routine instructions, who could not carry out their activities like others of similar age or exhibited behaviours like talking to self, laughing / crying, staring, violence, fear and New category introduced at Census 2011. Mental Illness was suspicion without reason were considered as mentally disabled for the covered under the category of Mental disability at Census purpose of the survey. The “activities like others of similar age” included Me ntal Illne ss 2001. activities of communication (speech), self-care (cleaning of teeth, wearing clothes, taking bath, taking food, personal hygiene, etc.), home living (doing some household chores) and social skills.

Sources: SARVEKSHANA 91st Issue Vol. XXVII No. 1 & 2 (July 2007)& Census of India 2011 Fig.1 Prevalence of disability (%) by NSSO 2002 and Census 2001, 2011

51 49

NSSO (2002) 28 Census of India (2011)

Census of India 2001

20 19 19

15 14

10 10 10 8 7 6 6

Movement Seeing (Visual) Hearing Speech Mental (Locomotors) Table 2. Prevalence of disability (%) by Census 2011 by social group

% Disability Total SC ST INDIA 1.7 1.8 1.8 JAMMU & KASHMIR 3.5 2.3 3.4 HIMACHAL PRADESH 2.7 3.1 2.5 2 2.1 1.9 RAJASTHAN 3.1 3.1 3.1 UTTAR PRADESH 1.1 1.1 1.1 BIHAR 1.1 1 1 SIKKIM 4.8 8.6 3.9 MANIPUR 1.2 1.3 1 MIZORAM 1.9 0 2 TRIPURA 1.8 2 1.1 MEGHALAYA 1.2 1 1.2 ASSAM 1.6 1.6 1.2 2.2 2.2 2.2 JHARKHAND 1.8 1.8 1.5 ODISHA 3 3.2 2.5 CHHATTISGARH 2.8 3.4 2.5 MADHYA PRADESH 1.8 1.9 1.5 GUJARAT 1.2 1.4 1 DAMAN & DIU 0.9 2.3 0.8 DADRA & NAGAR HAVELI 1.4 1.1 2 MAHARASHTRA 1.5 1.7 1.3 2.3 2.3 2 1.6 1.6 1.7 GOA 1.8 2.6 2.1 KERALA 3 3 3.7 1.3 1.4 3 PUDUCHERRY 1.8 1.7 1.3

Fig 2. Percentage distribution of disabled persons by social group for each sex and sector by NSS 2002 in India

42.2 41.4 41.3 41.1 41.2

37.6

30 29 29.6

26.2

23.2 ST 22.1 22.2 22.1 SC

18.4 OBC Other

8.4 7.7 6.6 7.1

2.5

Rural Urban Male Female All_person

Source: NSSO Survey on Disability 2002

Fig 3. Comaparion of disability prevalence by NSS and different round of Census

TAMIL NADU

KERALA

KARNATAKA ANDHRA PRADESH

MAHARASHTRA

GUJARAT MADHYA PRADESH

CHHATTISGARH ORISSA

JHARKHAND WEST BENGAL 2011 ASSAM 2002 BIHAR 2001 UTTAR PRADESH RAJASTHAN DELHI HARYANA UTTARANCHAL PUNJAB HIMACHAL PRADESH JAMMU & KASHMIR INDIA

0.0 0.5 1.0 1.5 2.0 2.5 3.0 3.5 4.0 % of disabled among population References:

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% of disabled among ST, SC and Total population

% of disabled among NSSO and two round of Census