CHAPTER3

DISABILITY: DEFINITION AND MAGNITUDE

As discussed in the preceding chapter, the varied and complex problems faced

by the persons with disabilities necessitated the adoption of an international

convention explicitly dealing with their rights. Analysing these complex problems, the

first and most significant issue would be that of social exclusion. Social exclusion has,

of course created certain barriers between the disabled and other sections of the

society. The degree of social exclusion faced by persons with disabilities varies

enormously according to an individual's status, as well as the type and severity of the

impairment and, in particular, his or her gender. As per, DFID's working definition,

social exclusion is:

"the experience of certain groups who suffer discrimination on the basis of their social identity and are excluded from economic, social or political opportunities as a result. This discrimination may operate at the level of State policy, institutional bias, social practices, or holistic neglect" (Chambers: 2005).

Therefore, the priority should be in identifying and removing the barriers, including

establishing links with other marginalised groups. In this connection, the very first

step is to get a feel of the problem, a sense of its size, assessment of its complexity. 1

Indeed, one of the approaches to analyse the reason behind social exclusion is

"definitional and classificatory" issues. The present chapter deals with the issues of

'Definition of disability' and its various aspects. An understanding of the issue is

possible only if we find out answers to certain basic questions. What is disability? Is

there any universal definition for disability? Who should be treated as disabled and

who should not be? What criteria should be adopted in this regard?

1 Dealing with the p~oblems connected with the physically and mentally handicapped, Justice V.R Krishna Iyer points out that

[t]he primary emphasis is on the thesis that: sociologists, philosophers, political professionals and welfare specialists ... should break the injustice of the old order and to make the justice of the new order. .. through the establishment of a comprehensive Bill of Civil Rights and Social Security (Iyer 1987:7).

51

3.1 Intricacies involved in understanding disability

Disability could be considered an umbrella tenn, which includes impairments,

activity limitations and participation restrictions. The concept of disability is directly

linked to many complex realities2 such as the problems connected with its (i)

tenninology, (ii) lack of well-conceived definition, and (iii) its colossal magnitude.

These complex realities need scrutiny.

3.1.1 Terminological divergences

Tenninological differences are found to be closely linked with societal

attitudes. Since the societal attitude towards the disabled has undergone changes

through different stages of social evolution, the concept of disability has also changed

accordingly. The traditional attitude towards the disabled was one of pity, sympathy

and charity. They were considered incapable of leading independent and productive

lives. Till the earlier half of the 20th century, a person with physical or some other

defect was called 'crippled', which itself showed the social stigma attached to it. 3

However, in the second part of the 20th century, a paradigm shift in the

societal attitude towards the disabled could be noticed. A new concept of welfare

approach emerged, which had dual implications. On the one hand, there was a gradual

awakening of society towards its own rights and obligations; and, on the other, there

had been a development of self-consciousness or identity among the disabled

themselves. This new approach for the welfare of the disabled is directed at socio­

economic integration of the disabled in the mainstream of active social life. As a

result of this shift, the words 'disabled' and 'handicapped' were preferred to

'crippled'. Thus the words disabled, handicapped, impaired, and crippled are noted to

be used interchangeably, which can be treated as one of the major difficulties in

understanding its magnitude.4

2 One of the major challenges that arises with persons with disabilities, apart from the terminological difference and lack of definition, is disability targeting which is very complicated as the developing countries generally lack the administrative capacity that is required to run such targeted programs (Mitra 2006:55).

3 The term 'crippled' not only implies social stigma but also a state of helplessness faced by them. 4 It is necessary to make distinction between these different terms. The term 'disabled' or 'disability'

generally refers to a solution wherein the functional capabilities are either lost or reduced considerably due to impairment. While, 'handicap' is a value judgment passed by others about an

52

Much of the literature on disability in India has pointed to the importance of

the concept of karma in attitudes to disability, with disability perceived either as

punishment for misdeeds in the past lives of the persons with disabilities, or the

wrongdoings of their parents. As two Indian authors have put it, "At a profoundly

serious and spiritual level, disability represents divine justice". 5 At a more mundane

level, persons with disabilities are traditionally perceived as somehow inauspicious.

Much qualitative research has found considerable social marginalisation of persons

with disabilities in India, though most also acknowledge that the social status of the

persons with disability's family has an impact on the potential acceptance in society.

3.1.2 Lack of well-conceived definition

Defining disability with precision and uniformity is considered to be difficult,

because different States follow different criteria to define disability each - with a

purpose to it. They range from very narrow to broad, from medical to social, cultural

to local, and integration to segregation (Ali and Sharma 1997:27). As aptly argued by

Asch:

"tenns such as normality, impairment and disability are highly contested. Their meanings are not clear, objective and universal across time and space and are contentious even for contemporaries in the same culture, profession and field" (Asch 2001: 3 00)

Different conceptual models have been developed by scholars and

international bodies to define disability which outlines the shift in disability policy

thinking from the charity and medical models of disability towards social model of

disability.

3.1.3 Lacuna in the conceptual models of disability

Until the late 1970s and early 1980s, the most influential and dominant ways

of describing and defining disability were shaped by a western biomedical paradigm.

In the words of Imrie (Imrie 2004: 289) this largely reflected the medical profession's

view of the impaired body as an "object of scientific interest, classification and

impaired, disabled person and it is not necessary that disability may become handicap under all circumstances. It becomes 'handicap' only when it interferes with the individual's day to day life (Kama 1994:418).

5 Baquer and Sharma (1997); Coleridge (1993),.Miles (1995), and Erb and Harriss- White (2002)

53

medical intervention". The influence of such discourses with their primary focus on

impairment, disorder and defect, together with their assured consequences, went far

beyond the profession of medicine. Undoubtedly, biomedical understanding of

disability has remained highly influential but in the course of the past three decades, it

has been challenged and shaped by social theories of disability. While a range of work

in the late 1970s and 1980s began to acknowledge the social dimensions of disabilitl

the major theoretical and ideological corrective to established understandings of

disability came from a growing body of politically engaged scholarship which gained

ground through the 1980s and 1990s, initially in North America and Western Europe.

This wide-ranging work sometimes identified as 'disability studies', drew yariously

on social science and the law to reframe disabled people's experiences and progress

their rights. 7

The various models can be described brief1y as follows:

• The medical model of disability relies on a purely medical definition of

disability. It thus equates the physical or mental impairment from a disease or

disorder with the disability that the person experiences. From a policy view

point, the person with disability is viewed as a 'problem', and in need of cure

and treatment. In terms of services, the general approach within this model is

towards special institutions for persons with disabilities, example special

schools, sheltered workshops, special transport etc. The limitations of the pure

medical model are evident, though it till underlies some current analysis such

as that based on disability-adjusted life years (DALY s).

• The charity model of disability also views the persons with disabilities as the

problem and dependent on the sympathy of others to provide assistance in a

charity or welfare mode.

• The social model of disability "places the emphasis on promoting social

change that empowers and incorporates the experiences of persons with

disabilities asking society itself to adapt". 8 The social model emphasises

institutional, environmental and attitudinal discriminations as the real basis for

6 For example see Blaxter 1975; WHO 1980. 7 See for example, Gliedman and Roth 1980; Fine and Asch 1988; Oliver 1990; Barnes 1991; Bynoe et

a!. 1991; Morris 1991 and 1998; UPIAS 1976. 8 See DFID (1997)

54

disability. Thus it is the society at large which disables the persons with

disabilities through discrimination, denial of rights, and creation of economic

dependency.

• The rights-based model of disability builds on the insights of the social model

to promote creation of communities which accept diversities and differences,

and have a non-discriminating environment in terms of inclusion of all aspects

of the life of society.

It took time to build consensus on a conceptual framework which reflected

dimensions of disability beyond the medical model of disability. The International

Classification of Impairments, Disability and Handicaps (ICIDH) from WHO, in

1980, was a breakthrough in this evolution (World Bank 2007:2). It recognised that

personal, social and environmental factors are all at play in 'creating' disability. The

ICIDH-29 from 1997 represents a further step in this process. ICIDH-2 was followed

by the International Classification of Functioning (ICF), which skips the linkage

between health conditions and functioning and classifies functioning directly, using

the same domains as ICIDH-2: body functions, activities and participation.

3.2 Definition of disability

Although defining disability is a complex, complicated and a controversial

exercise, it is important to carry out an analytical study on the subject. Black's Law

Dictionary defines disability as the want of legal capacity to perfom1 an act. 10 It also

det!nes disability as a 'crippled condition' .11

The ICIDH-2 defines disability as " ..... an umbrella term covenng three

dimensions: (i) body structures and function; (ii) personal activities; and (iii)

participation in society. These dimensions of health-related experience are termed

"impairments of function and impairments of structure", "activities" [i.e, nature and

extent of individual functioning due to impainnents], and "participation" [the nature

and extent of a person's involvement with life situations] respectively".

9 ICIDH-2 is sometimes termed as biopsychosocial model of disability. 10 Berkin V Marsh 18 Mont 152 as cited in Black's Law Dictionary (1958) p.548. 11 Kimbrough V National Protective Ins. Ass'n No.225 Mo. App 913.

55

From the holistic viewpoint, the definition of disability as given by the United

Nations seems to be quite exhaustive in its meaning. There are different types of

disability: (i) visually disabled, (ii) hearing disability (deafness), (iii) speech disability

(dumbness), (iv) mental retardness, and (v) orthopaedic disability. 12

3.2.1 Different approaches to disability

For better understanding of the definition of disability the conceptual models

that have been developed by scholars and international bodies to define disability

must be analysed in detail. It could be categorised into two main approaches:

i) individual paradigm, and

ii) socio-political paradigm.

(i) Individual paradigm

Individual 'paradigm consists of various sub-approaches: (a) Medical/Clinical,

(b) Psychological, (c) Economic-vocational, (d) Systems analysis, (e) Minority group,

(f) Human rights. 13

(a) Medical approach

This is the oldest and the most cdmmon approach to disability, as it views

disability as a defect in the person, to be cured or treated. As one scholar observes:

Society, in agreeing to assign medical meaning to disability, colludes to keep

the issue within the purview of the medical establishment, to keep it a personal matter

and 'treat' the condition and the person with the condition rather than 'treating' the

social processes and policies that construct disabled people's lives. 14

12 It defines the disabled as "any person, unable to ensure by himself or herself, wholly or partly, the necessities of a normal individual and/or social life in his/her physical or mental capabilities" (United Nations: 1984).

13 To limit the study of disability to any one approach would result in limiting its nature and scope. Disability could not be understood unless an integrated approach is evolved after analyzing each independent approach (Kama 1999:52).

14 See Linton, Simi (1998), "Claiming Disability: Knowledge and Identity" cited in Kanter, Arlene S 2003(30):244.

56

This approach is best represented by the World Health Organization (WHO)

on a three-point scale ranging from impaim1ent, disability and handicap (Wood

1981) 15

Impairment: Any loss or abnonnality of psychological, physiological or

anatomical structure or function

Disability: Any restriction or lack (resulting from an impairment) of ability to

perform an activity in the manner or within the range considered normal for a human

being.

Handicap: A disadvantage for a giVen individual, resulting from an

impairment or disability that limits or prevents the fulfilment of a role (depending on

age, sex, social and cultural factors) for that individual. 16

(b) Psychological approach

The psychological approach v1ews disability as certain psychological

disturbances, emanating from the onset of disability. According to this approach,

when something happens to an individual's body, it affects his/her mind as well.

Thus, in order to become fully human being, the disabled individual must· undergo

medical treatment and physical rehabilitation as well as the process of psychological

adjustment or 'coming to terms with disability'. 17

The first two approaches have limited the scope of persons with disabilities

and perceived all difficulties solely from the perspective of the proposed treatment for

the patient.

(c) Economic-vocational approach

The economic or vocational approach to disability seeks to establish a linkage

between the individual and society. It emphasises the health-related limitation on the

15 International Classification of Impairments, Disabilities and Handicaps, (Wood 1981 ). For details see Les, Mathew (2001), Disability-Global trends and International Perspectives, Paper presented to the Staple Inn Actuarial Society.

16 This International Classification of Impairments, Disabilities and Handicaps in the early 1980s was revised and renamed the International Classification of Functioning, Disability and Health (ICF). ICF is presented as an integration of the medical and the social models (WHO 2001 :20).

17 For more information, see Oliver, Michael (1981).

57

amount or kind of work perfom1ed by disabled people (Kama 2001 ). In other words,

this approach 18 is focused on the vocational limitations of the disabled. Like the

medical approach, this approach also suggests the modification of the people rather

than changing the environment and the work-site, or changes in the perception of

employees is the most desirable means of fulfilling the social and economic needs of

the disadvantaged strata of society.

Instead of modifying the environment suitable for their living conditions, this

approach also suggests the modification of the person.

(d) Systems analysis approach

The systems analysis approach propounds that any assessment of the

competencies of a disabled person or such disadvantaged groups requires to be

interpreted in the light of the culture or sub-culture in which the individual is

nurtured. So emphasis is given to real life contextual research.

Like other approaches, this approach is also not free from defects. An analysis

of the status of the persons with disabilities under the lens of cultural·or sub-cultural

aspect, here, does not appear to be realistic.

(e) Minority group approach

The minority group approach holds the v1ew that the disabled people do

possess the necessary features of a minority group. 19 The disabled are subjugated to

others and faced with the same kind of prejudice, discrimination and exploitation like

those of other minority groups.

Though the disabled may have some similarity with the minority groups, the

dissimilarities weigh more compared to the similarities. The apparent dissimilarities

include: (i) Physical limitations (ii) Non-participation (iii) Danger of social-crisis (iv)

18 This approach is more inclined to modify the physical capabilities and vocational skill of the disabled rather than the environment and the work site. Ibid p. 46.

19 According to Wirth, a minority group is [A] group who, because of their physical or cultural traits, are excluded from others in the society in which they live for differential and. unequal treatment, and who therefore, regard themselves as objects of collective discrimination (Wirth 1970: 34-42).

58

Heterogeneity of the disabled population. Hence, such a comparison of the disabled

with the minority group seems to be irrelevant.

(f) Human rights approach

This approach regards legal measures as constituting the framework by which

mechanism for equality of opportunity could be ensured. It signifies legal reasoning

and involves a task in finding authoritative principles to underpin the imposition of an

obligation upon some agency capable of fulfilling the demand. Thus, it strongly

advocates for the fonnulation and imple~nentation of legislation in order to provide

leverage to such disadvantaged individuals and thereby promote their . . 20 mamstreammg.

(ii) Socio-political paradigm

This approach emerged out of strong dissatisfaction among the disabled with

the traditional approaches to disability. The socio-political approach regards disability

as a by-product of interactions between individual and environment and holds that the

fundamental restrictions of disability are located in the social environment rather than

within the disabled individual.21 At the heart of this lay the central and unifying set of

understanding about disability that some of the most restricting and debilitating

features in the lives of disabled people were not a necessary or inevitable consequence

of living with impainnent, but rather these restrictions were socially and politically

constructed and therefore, be changed by social and political means.

The above analysis of the different approaches points out that disability is treated

either as an individual problem or the one created by the society. The difference

between these approaches lies in substance as well as the subject matter. While the

former considers the problems faced by the disabled persons as directly related to

their disabling conditions, the latter regards physical and social environments as major

determinants of disability. Howsoever, these approaches are identified to have failed

20 In recent years, the international community has adopted this human rights model of disability. It recognises the inherent equality of all people, regardless of disabilities or differences. It also recognises society's obligation to support the freedom and equality of individuals, including those who need appropriate social support (Kanter 2003:245).

21 Michael Oliver, Professor of Disability Studies at the University of Greenwich, has viewed the concept of disability from individual and social models. According to him, the social model does not deny the problem of disability but locates it squarely within society (Oliver 1966: 33).

59

to take into account the different aspects of disability m its entirety. As a

breakthrough to these traditional approaches to disability Bickenbanch22, argues

against the analysis that conceives of disabled people as a distinct and separate group.

He puts the case instead for a "Universalist" Approach that recognises disability not

as a minority group issue, a special category problem or an aberration from the

normal, but rather as a part of the human condition.23Universalist approach views

disability as a much more fluid state which may be experienced at particular times or

over times by large proportions of given populations (Albrecht and Bury : 2001) By

re-analysing disability in this way what we are recognising is that first, disability is

not a clearly defined or fixed state and second, that very large numbers of people

across the world at some point in their lives may find themselves vulnerable to at least

some of those damaging biopsychosocial experiences that have been so graphically

documented and analysed by disability rights scholars and activists.

3.2.2. A human rights approach to disability

On analysing of the different conceptual models, the human rights paradigm24

could be considered an appropriate framework for articulating the experiences of

persons with disabilities and progressing their rights and interest. At its most basic, it

affirms without qualification that disabled people are not 'other', they are

unquestionably included within the category and meaning of what it is to be 'human'

and may therefore expect all the rights derived from that status. The very point of

universalism is to establish an impartial standard between different persons and

groups. So when disabled persons' lives fall short of universal human rights standards

in someway, the issue may be understood as a human rights violation rather than

something specific to disability and disabled people. Thus adopting an essentially

22 Jerome Bickenbanch is a Professor in the Department of Philosophy and Faculties of Law and Medicine at Queens University, Kingston, Ontario, Canada. For the past ten years, he has been a consultant with the WHO in the preparation and testing of the International Classification of Disability, the ICF. He has published extensively on disability, health, ethics and the law.

23 This is what Anita Ghai, Reader in Psychology, Jesus & Mary College, University of Delhi and a well known disability scholar and activist speaks about persons with disabilities. She has coined the term 'Temporarily Able Bodies'. In her view, a physical challenge is seen in a negative light, as a medical problem or a personal tragedy. There is a need to see it as a positive light because everybody that sees himself as an able bodied person is just a 'STAB' person which means simply nothing but a Temporarily Able Bodied Person.

24 A number of writers have argued for the use of human rights paradigm as the most appropriate framework. They include Morris, Bickenbanch, Clements and Read etc. (Clements and Read 2008:23)

60

inclusive human rights approach is further reinforced by the recognition that disability

is a rather fluid and universal category and experience, involving substantial

proportions of populations across the globe at any one time or over time.

3.3. Magnitude of the problem

The problem of disability is assumed to be of colossal magnitude. However,

one may find difference in data on disability between countries in the way disability is

defined and measured. Disability prevalence estimates are derived from national

census or national population surveys. However, they are not comparable across

countries for several reasons:

The way impairments and disabilities are perceived and reported across

countries varies. They include differences in knowledge and awareness of

impainnents, diagnosis and screening, medicalisation of problems, perceived

standards of good health and eligibility to public benefits based on disability. All

these factors lead to differences in perceived disability.

Fundamental differences in disability definitions also have impact on

prevalence estimates across countries. Developed countries typically use disability

screens that assess activity limitations25 (e.g. limited ability to work), whereas

developing countries tend to use impairment screens (e.g. inability to hear, see).

Activity limitation screens generally lead to higher rates of reported disability than

impairment screen. 26

25 There are different ways to measure disability that correspond to different conceptual definitions of disability. The commonly used are (i) Impairment measures focus on the presence of impairments intrinsic in the individual like mental retardation, stammering, and stuttering (ii) Functional limitations refer to difficulties experienced with particular bodily functions such as seeing, walking, hearing etc. (iii) Activity limitations are limitations in activities of daily living. (Mitra and Usha 2006: 4022).

26 Sophie Mitra who is presently working as Assistant Professor at the Department of Economics, Fordham University has done extensive work on Disability Studies. Analyzing the magnitude of the problems of disabled she adds that individuals are more likely to identify activity restrictions because they immediately connect with daily experience; whereas impairment may only be vaguely familiar, and its nomenclature may be unknown. See also Mitra, S (2005) ''Disability: Economic and Social Development", in G.L Albrecht (Ed), The Encyclopedia of Disability, New Delhi: Sage Publications.

61

In India the aggregate number of persons with disabilities is keenly disputed,

with alternative estimates invariably higher than official ones. 27 Government of

India's own 11 111 Five Year Plan acknowledges that at least 5-6 per cent of the

population has disabilities and WHO estimates of the disabled population of India are

considerably higher again. Except the figures provided by National Sample Survey

Organisation (NSS) and Census Report 2001 28, India does not have any systematic

and reliable data on disability. The Census oflndia 2001 found 21.91 million persons

with disabilities (2.13 per cent of the population), while the National Sample Survey

58111 Round 2002 estimates 18.5 million which would come to around 1.8 per cent of

the population?9 The share of households estimated by NSS to have a disabled

member was 8.4 and 6.1 per cent in rural and urban areas respectively (though this

share seems high given the number of disabled individuals and survey results on their

household size). Alternative estimates from a variety of sources suggest that the actual

prevalence of disability in India could be easily around 55 million p~ople, and as high

as 90 million if more inclusive definitions of mental illness and mental retardation in

particular were used. The actual state is that the bulk of disabled people in India have

mild to moderate disabilities (World Bank: 2009).

Looking at the prevalence of specific disability types, the divergence between

census and NSS estimates are very pronounced for locomotor and visual disabilities.

While they also differ significantly for both hearing and speech disabilities, the

inclusion in NSS of multiple disabilities is a factor, as speech and hearing disabilities

may be more likely to combine. The locomotor and visual disability differences are

however much more sharp and cannot be explained like this. The major driver of

differences appears to be definitional, with the census defining visual disabilities more

broadly and vice-versa for movement disabilities.30

27 While official estimates of disability are low (around 2 per cent), alternative estimates using better methods and more inclusive definitions suggest a higher incidence of disability (5-8 per cent). Puri (2005) prepared a background material for this report, which provides a comprehensive summary of micro-studies on prevalence of different forms of disability in India. See also People with Disabilities in India: From Commitments to Outcomes (World Bank: 2009).

28 At the national level there are two institutions, National Sample Survey Organisations and Census of India, which collect national level data on the nature and magnitude of disability in the country.

29 Significantly, the two differ notably on the composition of the disabled population by type of disability. The differences are in part explained by different disability definitions in NSS and Census.

30 Bhanushali (2005), Goi has recognised a number of these issues, as summarised in the 2006 Technical Advisory Committee report on Disability Statistics.

62

Thus in disability prevalence, the starting point is no doubt, the estimation of

the total number of Persons with disabilities. The reason for high alternative estimates

as compared to official ones is based on several arguments like:

• Exclusion of disability categories in both NSS and Census.31

• The method of questioning on disability in both Census and NSS which relies

on a traditional "diagnostic" identifl.cation of disability by untrained

interviewers, which recent work coming out of UN expert group suggests is

the method that yields the lowest disability rates.

• Disability specific surveys which have found often substantially higher rates

of disability are in cases where interviewers have been far better trained on

detection and probing.

• It is clear from primary field research that significant categories of people who

are functionally disabled will not typically be identified by households as

being disabled.

• The social stigma attached to disability is also likely to contribute to under­

estimation.

All these factors give credence to the view that disability is not apparent; more

over, it is heterogeneous. It is heterogeneous in the sense that there are many kinds of

disabilities and different ways by which they are defined. So the immediate question

which arises is:

'Why there is such a vast difference in estimates m disability specific

surveys'? An attempt is made to find out the disparities by making a detailed study in

the estimates made by NSS and Census of India.

3.3.1. Measuring disabilities through National Sample Survey and Census32

The major factor resulting in this kind of divergence are definitions of

disabilities and methods of data collection used by these institutions.

31 There are numerous examples of excluded disab.ility categories including autism, thalassemia, haemophilia and many learning disabilities. For more details see the definition as provided under the domestic legislations.

32 The difference in definitions of disabilities adopted by the Census of India 2001 and National Sample Survey 58th Round 2002 are analysed here.

63

• Census of India document mentioned 'defining and measuring disability is a

complex issue and it is not easy to communicate these concepts during the

census process, in which only a limited amount of questioning time is possible

to be spent with a household for obtaining detailed information on every

individual'. With regard to definitions adopted by PWD Act33, Census of India

stated "the concepts and definitions coupled with measuring its extent and its

types contained in the PWD Act, 1995 were found to be extremely difficult to

canvass even in nonnal circumstances assuming people had time, were willing

and forthcoming to share this infonnation and there was an expert investigator

to elicit this information" (Bhanushali :201 0). Census therefore used its own

version of definitions of disabilities. NSS on the other hand define disability as

"a person with restrictions or lack of abilities to perfonn an activity in the

manner or within the range considered nonnal for a human being. It excludes

illness/injury of recent origin resulting into temporary loss of ability to see,

hear, speak or move".

• The Census of India counts 10,634,881 persons with visual disabilities. In the

next year NSS estimated them at 2,826,700. Thus Census estimates are 3.8

times NSS estimates. Based on the data, one may wrongly conclude that

number of visually disabled has declined by 78, 08,181 which is because of

the difference in the definition of visually disabled used by two institutions.

The Census of India defines seeing disabled as "a person who cannot see at all

or has blurred vision even with the help of spectacles. A person with proper

vision in one eye will also be treated as visually disabled. A person may have

blurred vision and has no occasion to test whether her/his eyesight would

improve by using spectacles would be treated as 'visually disabled'."

Whereas, NSS defines visually disabled as, "loss or lack of ability to execute

tasks requiring adequate visual acuity". Visually disabled include (a) those

who did not have any light perception-both eyes taken together and (b) those

who had light perception but could not correctly count the fingers of hand

(with spectacles/contact lens if he/she used spectacles /contact lenses) from a

33 PWD Act 1995 identifies the following seven categories of disability: (i) Blindness, (ii) Low vision,(iii) Locomotor disability (iv) Leprosy cured, (v) Hearing Impairment (vi) Mental retardation, (vii) Mental illness.

64

distance of three meters in good day light with both eyes open". Night

blindness was not considered as visual disability. 34

Thus because of wide definition, Census of India estimates of people with

seeing /visual disabilities are more as compared to NSS estimates.

• In case of disabled with speech disability, Census of India estimated that, in

India there are 1,640,868 (7.49 per cent of total disabled) persons with such

disabilities. Where as, NSS estimated them at 2,154,500 (11.65 per cent of

total disabled). Here also variation is due to definitional aspects. According to

Census of India, a person is recorded as having speech disability if he/she is

dumb, or a listener does not understand speech. A person who stammers but

whose speech is comprehensible will not be classified as disabled by speech.

NSS include among speech disabled, those who could not speak, spoke only

limited words or those with loss of voice. It also include those whose speech is

not understood due to defects in speech such as stammering, nasal voice, horse

voice and discordant voice and articulation defects etc. In this case person

with stammering voice are classified as disabled by the Census of India.

• Census of India has estimated 1 ,261, 722 people in India having hearing

disability which constitute 5.76 per cent of total disabled population. NSS

estimated them at 3,061,700, 16.56 per cent oftotal disabled. According to the

Census of India hearing disabled means all those who cannot hear at all, can

hear only loud sounds, cannot hear through one ear but her/his other ear is

functioning normally. A person who can hear using hearing aid will not be

considered as disabled under this category. According to NSS, if one ear is

normal and the other ear had total hearing loss, then the person was not judged

as disabled. Similarly hearing disability was judged without considering the

use of hearing aid. Thus there is divergence of definitions. Persons using

hearing aid are not considered as disabled by Census while NSS considered

them as disabled. A person whose one ear is functioning nonnally is

34 If we compare these two, definitions adopted by Census of India are wide in coverage compared to NSS. Definition adopted by NSS includes persons either with no light perception or blurred vision, whereas, Census includes, apart from these two categories, people with proper vision in one eye and also people who may have blurred vision and had no occasion to test whether his/her eyesight would improve by using spectacles.

65

considered as non disabled by NSS while the Census of India considered them

disabled.

• In the case of movement disability, Census definitions include the person who

lacks limbs or unable to use them, absence of all fingers, deformed body,

cannot move without aid, unable to move/lift an article, unable to move

because of problems of joints like arthritis. NSS definitions of locomotor

disability include person with loss or absence or inactivity of whole or part of

hand or leg or both due to amputation, paralysis, deformity or dysfunction of

joint, those with physical defonnity in the body such as hunch back, deformed

spine etc. Dwarfs and persons with stiff neck of pennanent nature who

generally did not have difficulty in the normal movement of body and limbs

were also treated as disabled. Using these definitions Census of India

calculated 6,105,477 (27.87 per cent of total disabled) disabled people in

India. Whereas, NSS estimated them at 10,634,000 (57.51 per cent of total

disabled). In this case estimate of NSS are 1. 74 times that of Census. The

reason for the divergent estimates lies, among other things, in definitions. NSS

definition of locomotor disability is very wide as compared to the Census of

India. It includes loss of limbs and deformed body as included by the Census

of India. Over and above it also includes paralysis, dysfunction, and dwarfs . .

• There is not much difference in the definitions of mental disability used by

NSS and Census. Both have considered comprehension appropriate to age as a

criterion for identifying mentally disabled (Bhanushali :201 0)

Thus because of different definitions adopted by NSS and Census, the picture

of disability as envisaged by both is different. Initially the question of disability was

canvassed by the Census of India but it was discontinued because of question raised

on the reliability of data, definitions and methodology. Census 1981 included the

question of disability but that practice was again discontinued in 1991 Census because

of question which arose on the reliability on information. NSS on the other hand had

conducted disability surveys at different intervals. The definitions are changed by

NSS in different surveys. NSS in its 47th round July-December 1991 concentrated

only on physical disability. Analysing Census 20 II, household schedule of Census

2011 attempts to collect infonnation on eight types of disabilities as against five

included in the household schedule of Census 200 I. The information is being

66

collected on disabilities namely, disability 'in seeing', 'in hearing', 'in speech', 'in

movement', 'in mental retardation', 'mental illness', 'any other' and multiple

disability'(Govemment of India : 2011). However, the addition of three more

categories of disability does not help much. Mental retardation being temporary and

curable could have been replaced by some other long ignored or neglected diseases

like muscular dystrophy, autism, cerebral palsy etc. Even the new addition as 'any

other type' would not be of t:,rreat use since it fails to provide for specifying the type of

disability within it. A practical solution to this is that at national levels there should be

common definitions used by all agencies. Disabilities as defined by PWD Act 1995

can best be utilised at the national level with some modifications to make it easy to

collect information.

This comparative study necessitat~s looking into the definition of disability as

enunciated in various national legislations.

3.4. Definition and statistics of persons with disabilities under selected national

legislation

The United States,35 Canada and Spain are the first countries in the world to

have enacted anti-discrimination legislation for the persons with disabilities (Degner

2000:184)

• Australia

Under Disability Discrimination Act, 1992, disability36, in relation to a person,

means:

35

(a) total or partial loss of the person's bodily or mental functions; or

(b) total or partial loss of a part of the body; or

Since the passage of the Americans with Disabilities Act in 1990, approximately 40 countries have enacted their own disability discrimination laws, some of which reflect a shift in approach from the welfare model to a civil rights law. See The Americans with Disabilities Act 1990 available at URL: http://www.dol.gov/esa/regs/statutes/ofccp/ada.htm. See also Powell, Russell (2004), "Beyond Lane: Who is Protected by the Americans with Disabilities Act, Who Should be?", Denver University Law Review, 82:25

36 In Australia almost 20 per cent of Australians have a disability (3.96 million people). This proportion is increasing, particularly as the population ages. See Australian Bureau of Statistics, Disability, Ageing and Carers: Summary of Findings, 2003.Australia has ratified the Convention on July 17, 2008 and the Protocol on August 21, 2009.

67

(c) the presence in the body of organisms causing disease or illness; or

(d) the presence in the body of organisms capable of causing disease or

illness; or

(e) the malfunction, malfonnation or disfigurement of a part of the person's

body; or

(f) a disorder or malfunction that results in the person leaming differently

from a person without the disorder or malfunction; or

(g) a disorder, illness or disease that affects a person's thought processes,

perception of reality, emotions, or judgment or that results in disturbed

behaviour;

and include.s a disability that:

(h) presently exists; or

(i) previously existed but no longer exists; or

(j) may exist in the future; or

(k) is imputed to a person

The Disability Discrimination and other Human Rights Legislation

Amendment Act 2009, has made a number of significant changes to the Disability

Discrimination Act 1992.37 Accordingly, the definition of disability in Sec. 4 of DDA

has been changed and defined broadly and includes past, present and future

disabilities, including because of genetic predisposition to that disability as well as

imputed disabilities. 38 'Disability' also expressly includes behaviour that is a

manifestation of the disability.

• Canada

Under the Canadian Human Rights Act, 1977,39 disability means any previous

37 These changes commenced operation from 5th August 2009. 38 It is therefore unlawful to discriminate against a person because of a genetic predisposition to a

disability. For more information see Australian Human Rights Commission (2009), Improved rights protection for people with disability, Conunentary on the 2009 changes to the Disability Discrimination Act 1992 (Cth) and related measures available at http:/ /www.hreoc.gov.au/legal!publications/improved dda2009 .html

39 See Canadian Human Rights Act available at. URL: http://laws.justice.gc.ca; See also Definition of disability in selected national legislation, [Online: web] Accessed on 2 October 2006 URL: www.un.org/esa/socdev/enable/rights/ahc8docs/ahc8bkdoc5.docr

68

or existing mental or physical disability and includes disfigurement and previous or

existing dependence on alcohol or a drug.

'Persons with disabilities ' 40 under Employment Equity Act, 1995, means

persons who have a long-tenn or recurring physical, mental, sensory, psychiatric or

learning impairment and who

(a) consider themselves to be disadvantaged m employment by reason of

that impairment, or

(b) believe that an employer or potential employer is likely to consider them

to be disadvantaged in employment by reason of that impairment, and

includes persons whose functional limitations owing to their impaim1ent

have been accommodated in their current job or workplace

• China

Under the Law on the Protection of Persons with Disabilities (2008)41, a

person with disabilities refers to one who has abnormalities of loss of a certain organ

or function, psychologically or physiologically, or in anatomical structure and has lost

wholly or in part the ability to perform an activity in the way considered norma1.42

The term 'a person with disabilities' 43 refers to one with visual, or hearing, or

speech, or physical, or intellectual or psychiatric disability, multiple disabilities and/or

other disabilities. Thus, Chinese law focuses on the individual's need to change its

attitude about disability, rather than society's need to change its attitude about the

40 In Canada between 200 I and 2006 the number of persons who were reported having a disability increased by three-quarters of a million people (+21.2 per cent), reaching 4.4 million in 2006. See Disability Statistics Canada available at http://www.disabled­\vorld.com/disability/statistics/disability-statistics-canada.php Canada signed the UN Convention on March 30, 2007.

41 Law of the People's Republic of China on the protection of persons with disabilities was adopted at the 17th Meeting of the Standing Committee of the Seventh National People's Congress on December 28th' 1990, and revised at the 2nd meeting of the Standing Committee of the Eleventh National People's Congress of the People's Republic of China on April 24t\ 2008.

42 Article 2 of the Law on the Protection of Persons with Disabilities (2008) 43 There are 82.96 million persons with different types of disabilities in China (occupying 6.34 per cent

of the total population). China signed the UN Convention on March 30, 2007, and ratified it on August 1, 2008.

69

person with a disability.44

According to this definition, a person with a disability is viewed as an object

to whom benefits, treatment and rehabilitation is provided, rather than a subject of the

law's protections.

• Ethiopia

Under the Proclamation concermng the Rights of Disabled Persons to

Employment, 1994,45 a 'disabled person46' means a person who is unable to see, hear

or speak or suffering from injuries to his limbs or from mental retardation due to

natural or man-made causes; provided, however, that the term does not include

persons who are alcoholics, drug addicts and those with psychological problems due

to socially deviant behaviours.

• Israel

Under the Equal Rights for Persons with Disabilities Law, 1998,47 a person

with a disability means a person with a physical, emotional or mental disability,

including a cognitive disability, permanent or temporary, as a result of which that

person's functioning is substantially limited in one or more major spheres oflife.48

Thus, the vanous disability discrimination laws that have been enacted

44 See Law of the People's Republic of China ort the Protection of Disabled Persons, adopted at the 171

h meeting of the Standing Committee of the Seventh National People's Congress on December 28, 1990. Visit URL: http://www.cdpf.org.cn

45 Proclamation concerning the Rights of Disabled Persons to Employment, Proclamation No.1 0111994 of 26 August 1994 is available at URL: http://www.ilo.org/dynlnatlex/docs/WEBTEXT/39707/64949/E94ETHOJ.htm

46 There is a serious lack of reliable data on disability in Ethiopia. The only current source of information is the national housing and population census (1994) and the last survey reported that there are 1 million people with disabilities out of the total population of63 million. WHO, on the other hand, estimates that 10 per cent of the worlds population is disabled, which would mean that Ethiopia could have up to seven million people with disabilities. See (United Nations Economic Commission for Africa: 2008). Ethiopia signed the UN Convention on March 30, 2007.

47 For the text of Equal Rights for People with Disabilities Law, 5758-1998 (1999) (Isr.) visit URL: http://www.justice.gov.il/structure/foreign/files<uscore>eng.htm The intent of the original drafters of the Israel's disability law was to incorporate the best elements of the ADA, Canada's Charter and Sweden's law that created a conunission on disability into Israel's new disability law and presented it to the Israeli parliament in July of 1995. See Stanley Herr (2002), Reforming Disability Discrimination Laws: A Comparative Perspective, 36 U. Mich. J.L Reform 305,319-322.

48 Out of 7 million total population, one quarter of Israel's population that is, 1.36 million people are disabled (Feldman: 2007). Israel signed the UN convention on March 30, 2007.

70

throughout the world differ in structure, scope and coverage. Different countries have

different views as to which human conditions qualify within the definition of

disability. A few countries, relying on the Americans with Disabilities Act of United

State's broad definition of disability, define disability broadly to include people who

are regarded as disabled, as well as those with drug and/or alcohol addiction.49

However, the narrowest definition of disability is that found in Ethiopia's law, which

specifically excludes all persons with mental illness as well as those with alcoholism

and drug addiction.

• Spain

Spain50 has defined the term 'disability' by imposing criminal penalties for

discriminatory practices. It makes it illegal for an employer to refuse to hire a worker

with a disability who is capable of doing the job. 51

• Sweden

Under the Act Prohibiting Discrimination in Working Life against Persons

with Disabilities, 1999, 'disability' means any permanent (enduring) physical, mental

or intellectual limitation of a person's functional capacity that, as a consequence of an

injury or illness, existed at birth, arose thereafter, or may be expected to arise. 52

• United Kingdom

According to the Disability Discrimination Act, 1995,53 of the UK, subject to

49 See Canadian Human Rights Act, 1977; Hong Kong Ordinance on Disability, 1990; The Disability Discrimination Act, 1995 (U.K).

50 8.5 per cent of the Spanish population have a disability (3.847.900 people). Of them, 1.547.300, 00 (40 per cent) are males and 2.300.500, 00 (60 per cent) are female. See Academic Network of European Disability Experts (ANED): 2009. Spain has signed both the Convention and Protocol on March 30, 2007 and also ratified both on December 3, 2007.

51 See Spain's law, To promulgate a worker's Charter, Act No. 8, B.O.E, No. 64, 5799 (1980) (exemplifying laws outlawing discrimination in the criminal code).

52 Sweden has ratified the United Nations Convention and the Optional Protocol on December 15, 2008. There are four important Acts prohibiting discrimination on the grounds of disability. 15.7 per cent of the general population between the age 16-65 (919,000) have a disability of which 47.3 per cent are male and 52.7 per cent are female. For more details see Academic Network of European Disability Experts( ANED )-VT /2007 /005availableathttp:/ /www. disability- · europe.net/content/pdf!Sweden-ANEDcountryprofile.pdf

53Text of Disability Discrimination Act is available at URL: http://www.opsi.gov.uklacts/acts1995/95050 In the UK, one in six people (10.3 million) living in a

71

the provisions of Schedule I, a person has a disability for the purpose of this Act if he

has a physical or mental impainnent which has a substantial and long-term adverse

effect on his ability to carry out normal day-to-day activities.

• United States

Under the Americans with Disabilities Act Amendments Act of 200854, with

respect to an individual, the term 'disability' means

(a) a physical or mental impairment that substantially limits one or more

of the major life activities of such individual;

(b) a record of such an impairment; or

(c) being regarded as having such an impairment. 55

Although the provision of private right of action for violations of the anti­

discrimination are incorporated in the laws of many States, 56 there are States, which

failed to specify any remedies whatsoever in their laws. 57

The preceding discussion reveals that domestic disability laws in vanous

States also vary greatly in structure, coverage, enforcement mechanism and even in

their respective definitions of disability. It is also revealing the positive steps made by

States after signing the Convention which is indeed a move toward the human rights

approach to disability.

3.4.1 The Convention and its negotiation

It has to be kept in mind that 'to derive an intemational definition for

disability' that would be employed as a mechanism for determining who is covered

private household is reported having a limiting long-term illness (LL TI) See Disability Statistics: Challenges and Sources by Dority, Kim.

54 The Americans with Disabilities Act Amendments Act of 2008 was signed into law on September 25, 2008 and became effective January 1, 2009. because this law made several significant changes to the definition of the tem1 'disability'. For further details see http:/1\vww.eeoc.gov/policy/docs/qanda adaaa nprm.html

55 A person must meet the requirements of at least one of these three criteria to be an individual with a disability under the Act. For further details on anti-discrimination legislations See(Singh 2003:183-195). United States of America has signed the Convention on July 30, 2009.

56 Only four countries have provision for private right of action for violations of anti discrimination. They are Australia, Malawi, Switzerland and Uganda.

57 See Brazil (Constitution Act 1988) and also Persons with Disabilities, Law No 1678 (1995) (Bol).

72

under the disability/human rights convention was not the very purpose of the panel

which discussed, the emerging approaches to definitions of disability. Rather, the

purpose of examining these issues was to aid in the systematic determination of the

Convention's scope. The same view was reflected in the working group, which was

constituted at the second session of the Ad Hoc Committee. The working group did

not agree on a definition of disability. Its report contained the following footnote:

Many members of the working group emphasized that a convention should

protect the rights of all persons with disabilities and suggested that the term disability

should be defined broadly. Some members were of the view that no definition of

disability should be included in the convention, given the complexity of disability and

the risk of limiting the ambit of the convention. 58

Thus, the biggest problem was whether or not to define disability and persons

with disabilities. Those who were in favour of these definitions spoke strongly on the

topic and the Chair ultimately felt that it would be necessary to include one or both in

the Convention. The EU, India, Japan, Norway and The Russian Federation were all

against including definitions for either of these tenus. On the other hand, Argentina,

China, Israel, Kenya, The Libyan Arab Jamahiriya, Qatar, and Yemen all wanted at

least one definition and more seemed to favour defining persons with disabilities.

There were many suggestions for texts on which to base the definitions, including the

International Classification of Functioning, Disability and Health (ICF) of the WHO,

the UN Standard Rules on the Equalization of Opportunities for Persons with

Disabilities, and the Inter-American Convention on the Elimination. of All Fonns of

Discrimination against Persons with Disabilities, which was proposed by Colombia

and supported by Argentina, Chile, Mexico, and Yemen, and the Chair observed that

most States wanted a combination of a medical approach and a social approach.

IDC was strongly in favour of a definition for persons with disabilities59 but

58 See Footnote No.l2 of the Working Group. 59 IDC defined 'person with disability' as an individual, whose potential to lead an inclusive life in the

community of his/her own choice, is limited by the separate or concomitant impact of physical, economic, social and cultural environments and/or personal factors that interact with a condition. Such condition include physical, sensory, psychosocial, neurological, neuro diverse, medical, intellectual or other conditions that may be permanent, temporary, intem1ittent or imputed.

73

wanted to ensure that the definition should move away from a medical approach, and

proposed their own language, which was suppmied by Kenya. They had the view that

UN Standard Rules were too medical and the ICF too temporary and controversial.

The Chair concluded that the definition needs to be broad and proposed a new

definition during the seventh session.60

The discussion on 'definition of disability' continued till the end of the eighth

session,61 which finally resulted in its final shape under Article 1 of the Convention. It

reads as follows:

Persons with disabilities include those who have long-tenn physical, mental,

intellectual, or sensory impairments which in interaction with various barriers may

hinder their full and effective participation in society on an equal basis with others.

3.4.2. Position of India

India has played a lead role in the drafting of the International Convention on

the Rights of Persons with Disabilities. Apati from the involvement in the UN

Working Group, Asia-Pacific Forum of National Human Rights Institutions Working

Group on Disabilitl2 was constituted following the APF's63 Workshop on

"Promoting the Rights of People with Disabilities: Towards a New UN Convention",

They took the view that they wanted to define who has the right to be covered by this definition and in the absence of such a definition States may define what they find best and may exclude disability groups which should be covered and protected by this Convention.

60 In the seventh session the Chair's proposed definition was, "Disability results from the interaction between persons with impairments, conditions or illness may be permanent, temporary, intermittent or imputed, and include those that are physical, sensory, psychosocial, neurological, medical or intellectual".

61 In the eighth session though there was consensus that the Convention will have a definition on disability, State parties brought a number of proposals for definitions. It was clear that further discussion would be needed and the chair appointed Jordan's delegate Mu'taz Hyassat as the facilitator to lead an informal working group on the topic.

62 Visit URL: www.asiapacificforum.net for further details on APF. 63 The APF is a regional organisation comprised of the following independent national human rights

institutions (i) Afghanistan Independent Human Rights Commission (ii) Australian Human Rights and Equal Opportunity Commission (iii) Fiji Human Rights Commission (iv) National Human Rights Commission of India (v) Indonesia National Commission on Human Rights (vi) Malaysian Human Rights Commission (vii) Mongolia National Human Rights Commission (viii) National Human Rights Commission of Nepal (viii) New Zealand Human Rights Commission (ix)Palestinian Independent Commission for Citizens Rights (x) Philippines Commission on Human Rights (xi) National Human Rights Commission of the Republic of Korea (xii) Human Rights Commission of Sri Lanka (xiii)National Human Rights Commission of Thailand.

74

which was jointly hosted by the National Human rights Commission of India, the

British Council and the Office of the United Nations High Commissioner for Human

Rights (OHCHR) at New Delhi, from 26-29 May 2003, to discuss the contribution of

the national human rights institutions (NHRis) to the development of the proposed

Convention.

3.4.3. National Human Rights Institutions

NHRis from the very beginning supported the inclusion of the definition of

disability in the Convention (including in the context of the Bangkok workshop for

the Asia Pacific64 and the New Delhi workshop for the Commonwealth and the Asia­

Pacific). They further recommended that the definition should be a broad one,

reflecting a social model of disability and added that without a definition or some

other form of a clear statement on what is meant by 'disability' it is likely that

(i) Some States would refuse to ratify the Convention on the ground that its

meaning and the obligations it generates are too uncertain.

(ii) The Convention would fail to fulfil its potential in providing a template

for development of national law and policy and for guiding awareness of

disability in society.

(iii) States, which lack legal protection or policy for some type of disability,

will not receive any stimulus from a Convention towards more inclusive

approaches.

3.4.4. Government of India

The Indian delegation to the seventh sessiOn of the Ad Hoc Committee

represented by Mrs. Sarita Prasad, Secretary and Shri. Ashish Kumar, Director of the

Ministry of Social Justice and Empowerment made intervention on the definition of

disability. India believed that a definition of disability as also persons with disabilities

was the most important aspect of the article but supported the Chair's view that there

is no need to define both of these terms. It noted the references to ICF of WHO or

64 Bangkok Recommendations pointed out that the Convention should contain a definition of disability that reflects an understanding of disability as something which is the result of social and environmental factors. Definition of disability should not be restrictive. It should cover physical, psychiatric and multiple disabilities. It should acknowledge that disability can be permanent, temporary, episodic and perceived.

75

some general formulations such as the Inter-American Comrention on the Elimination

of All Fonns of Discrimination against Persons with Disabilities and questioned how

useful a general definition of disability would be, as State parties will have to provide

specific and scientifically measurable definitions of each type of disability in their

domestic laws and the scope of the definition may change over time. Obviously, India

favoured leaving the details of the definition to individual States (Government of

India: 2006 b). Similar position was taken by Norway, Japan, EU, and The Libyan

Arab Jamahiriya.

3.5 Existing discrepancies on definition

As India is gearing up towards the implementation of the Convention, some

immediate problems which are required to be resolved are pointed out in a very broad

manner in this section. The greatest difficulty, which was encountered or witnessed

even during the drafting process itself, was the lack of well-conceived definition of

disability. In India, for example, the major disability legislation namely, the Persons

with Disabilities Act 1995, the Rehabilitation Council of India Act 1992,65 and the

National Trust for Persons with Autism, CeTebral Palsy 1999, and Mental Retardation

Act 198766, have inherent contradictions in various provisions. For example, the PWD

Act defines seven categories of disabilities-visual impainnent, hearing impairment,

locomotor disability, mental retardation, mental illness, low vision and leprosy cured.

Section 56 of the PWD Act also defines 'Persons with Severe Disabilities'. On the

other hand, the National Trust Act defines four: disabilities-Autism, Cerebral Palsy,

Multiple Disability and Mental Retardation. While one disability of 'mental

retardation' is common in both the Acts, all other disabilities are unique to specific

Acts, which results in a lot of contradiction and confusions in case of legally tenable

65 The Act has used the term handicapped instead of disability. According to the definition: Handicapped means a person (i) visually handicapped; (ii) hearing handicapped; (iii) suffering from locomotor disability (iv) suffering from mental retardation.

66 According to this Act, persons with disability means a person suffering from any of the conditions relating to autism, cerebral palsy, mental retardation, or a combination of any two or more such conditions and includes a person suffering from severe multiple disability. Autism means a condition of uneven skill development primarily affecting the communication and social abilities of a person, marked by repetitive and ritualistic behaviour. Cerebral Palsy means a group of non progressive condition of a person characterized by abnormal motor control posture resulting from brain insult or injuries occurring in the pre natal or infant period of develppment and Mental retardation is a condition of arrested or incomplete development of mind of person, which is specially characterized by sub nom1ality of intelligence.

76

definition .. 67 In addition to this, the lack of adequate data on disability is one of the

prime reasons for the magnitude of the problem. In the NSS, a disability schedule is

administered every 11 years, with the most recent one fielded in 2002. In the Census,

a disability question was included in selected years, in 2001 and recently in 2011.

The Census of India and the NSS have different sampling designs. The

Census is an enumeration of the entire population of India while the NSS uses a

nationally representative stratified sample. In addition, the differences in study design

and the definition68 adopted by both have resulted in estimate differences, as shown in

Tablel

Table 1: Prevalence estimates for disability types in the Census and the National Sample Survey.

Disability Type Census 2001 NSS 2002

Number % of Disabled Number % of Disabled

Visual 10,634,881 48.55 2, 826, 700 15.29

Speech 1,640, 868 7.49 2,154,500 11.65

Hearing 1, 261,722 5.76 3,061, 700 16.56

Locomotor 6,105,477 27.87 10,634,000 57.51

Mental 2,263, 821 10.33 2,097,500 11.34

Total 21,906,769 100 18,491,000 100

Source: Economic and Political Weekly- September 23, 2006.

3.6 Summing up

Disability represents a complex process and is not a single, static state. It refers to the

outcome of the interaction of a person and his environment (physical, social, cultural

or legislative) and represents a measure of the negative impact of environmental

factors on one's ability to participate. The complexity of the concept has resulted in

67 See Report of the Working Group on Empowering the Disabled for the Eleventh Five Year Plan (2006) Government of India, Pla1ming Commission.

68 Both sources classified types of disability based on loco motor, visual, hearing, speech, and mental. Their data sources have substantial variations in prevalence estimates of disability. See Table 1.

77

the proliferation of statistics on disability that are neither comparable nor easy to

interpret. The extent of discrepancies could be managed to a great extent if one

accords importance to the census tabulation and discreet registration of disabled

persons without undue-publicity. In this regard, Justice V.R. Krishna lyer holds the

following:

Even as there is legislative backing for the general census, a nation wide periodically updated, detailed disability data bank with necessary heads and sub-heads, current habilitative condition and distress situation of the countries handicapped minorities is a desideratum. 69

In order to overcome these difficulties, the UN Statistical Office has compiled

national disability data and formulated a statistical database called the United Nations

Disability Statistics Data Base (DISTAT). 70 With the help of DISTAT, necessary

improvement could be brought about in the development of national disability

statistics and a conceptual framework, thereby facilitating the . cross-national

comparison of disability data. One of the bt:oad areas of the United Nations Statistics

Division towards the improvement of disability statistics is technical cooperation,

which is an important avenue for monitoring the implementation ·of the census

recommendations. 71 Technical cooperation 1s done mainly through training

workshops aimed at strengthening national capabilities to produce, disseminate and

use data on disability for policy development and implementation. To achieve this,

producers and users of disability statistics are brought together to promote

69 The main reason for the complexity of the situation as per his view is the absence of an intelligently descriptive and scientifically classified census of disabled. He adds that for this, basic meaningful data is absent and also the scale, diversity of deprivations, depths of distress, broad heads of classification, socio- economic milieu of the disabled , age group, therapeutic needs, tools and exercises, possibilities of treatment, potential for employment in sheltered workshops or other places, projects whereby cultural handicaps may be remedied and a host of other essential information necessary before legislative can take off are unavailable (Iyer, Krishna V.R 1987:26).

70 It should be noted that the World Programme of Action concerning Disabled Persons recommended governments to collect data on disabled persons through national population censuses; household surveys etc and disseminate the information obtained. In accordance with this recommendation, the Statistical Office completed a microcomputer database in 1988 called 'United Nations Disability Statistics Database' (DISTAT).The first compendium on disabled persons was published in 1990. It contains detailed information on 55 countries and covers 12 demographic and socioeconomic topics namely age, sex, residence, educational level, economic activity, marital status, family environment, causes of disability and special auxiliary means used (United Nations 1993: 13)

71 The United Nations has since the 1950s developed international recommendations on population and housing censuses. The aim of these recommendations is to assist countries in planning and carrying out censuses and guide them on the methods and content of their census See Mbogoni, Margaret and Angela Me (2002), Revising the United Nations Census Recommendations on Disability, Paper prepared for the first meeting of the Washington Group on Disability Statistics, United Nations Statistical Division.

78

understanding of data collection issues and to signify data required for policy

fonnulation. Further, the need for comparable population based measures of disability

for individual country use and for international comparisons was recognised in June

2001 at the United Nations International Seminar on the Measurement of Disability.

The Washington Group on Disability Statistics 72 was fom:ted to address this urgent

need. The purpose of the Washington Group on Disability Studies is to deal with the

challenge of disability definition and measurement in a way that is culturally neutral

and reasonably standardised among the UN member States (Madans et al, 2011).

Thus, in the light of the above discussion, although it may be true that there

could not be a universal blue print of definitions, it is necessary to have a broad and

inclusive definition which could stimulate the fundamental changes required to

protect the human rights of some groups which are not included. Some important

outcomes to this effect are appreciated in this section.

• The new Act should define the tenn 'person with a disability' in a generic

manner as has been defined in the Convention. Such a broad definition

will bring within the ambit of the law all persons with disabilities for the

provisions dealing with non-discrimination.

• The Act should also carry an enumerative list that is illustrative and not

exhaustive of the meaning of the term disability. In addition to those

disabilities that exist in the current legislation, and others that were sought

to be added through the amendments proposed by the Ministry, such an

enumerative list should include the following:

(i) Blindness of one eye

(ii) Speech impairment

(iii) Neuro-muscular conditions (which would include conditions such as

muscular dystrophy, paralysis, multiple sclerosis etc)

72 The Washington Group on Disability Statistics is a voluntary working group made up of representatives of over 100 National Statistical Offices and International non-governmental and disability organizations that was organized under the aegis of the United Nations Statistical Division. The work which began in 2001, took an added importance with the passage and ratification of the Convention.

'79

(iv) Persons affected with leprosy (in case of leprosy cured as in the current

Act)

(v) Aging related disability

• It is desired that the statute should prescribe for a central identification

process which would yield a certificate which can be employed for all

manner of benefits, so that persons with disabilities are not required to

obtain concession certificates from different authorities. The statute should

provide that the central identification would be accepted as a proof of

disability by all authorities across India.

• Alternatively, it is suggested that, the Unique Identification, Number

process project73 currently being undertaken by the Government of India to

include the component of identifying a person with a disability. Such

identification to be made acceptable as proof of disability by all authorities

across India.

• Even though, the authorities are keen that the difficulties of persons with

disabilities in obtaining disability certificates are minimised, they also

need to be vigilant enough to curb the issue of false certificates.

Consequently, it is suggested that any person who obtains a false

certificate of disability fraudulently is to be punishable with up to two

years of imprisonment and/or fine of Rs.l 000; and any medical

practitioner who issues a certificate of disability fraudulently shall be

punishable with a term of up to two years imprisonment and /or fine of

Rs.25, 000/- and further, his license to practice shall be revoked.

• Impairments included in the statute should not be defined in the legislation

itself; instead the legislation should provide that the conditions included in

the legislations shall be defined in the rules in accordance with the current

knowledge ofthe conditions and the social barriers to participation.74

73 Unique Identification Project was initially conceived by the Planning Commission as an initiative that would provide identification for each resident across the country and would be used primarily as the basis for efficient delivery of welfare services. It would also act as tool for effective monitoring of various programmes and schemes of the Government.

74 Thus for example autism should be defined according to current understanding and not as defined in the National Trust Act and the social model should be reflected in the subordinate legislation defining 'person living with mental illnesses, a medical mode of measurement such as the IDEAS scale should not be utilised.

80

• In view of the adoption of the social model, the impairment based concept

of 'severe disability' should be removed from the law. Also the forty

percent criterion used in the present Act should be employed in the new

Act.

• Regarding disability certificate which is the first step in getting all the

benefits, and is primarily regulated by subordinate legislation, it is

necessary that the rules and procedures are made more disabled-friendly. It

is also stressed that the procedure for obtaining a central identification

should be specified in the accompanying rules.

The next chapter will focus on the legislative framework and further into the

six major issues closely connected with persons with disabilities.

81