This chapter explores evidence on attitudes to disability in India, and their implications for public policy. Attitudes of society, families and PWD themselves contribute to converting impairments into disabilities. Research in India has consistently found substantial social marginalization of people with disabilities. The attitudes of specific societies are critical in assessing both the intensity of disability (i.e. how disabling a given type or level of impairment becomes for the individual disabled person) and in assessing areas where collective action is likely to fail the disabled community, and hence public action be desirable. In addition to the attitudes of the general society, the attitudes of persons with disabilities and their families are important, in some ways even more important. At the same time, the different sets of attitudes clearly interact, so that negative views about disabled people in the broader community are likely to be internalized in many cases by people with disabilities and their household members.

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 PWD, or the wrongdoings of their parents. As two Indian authors have put it, “At a profoundly serious and spiritual level, disability represents divine justice”. 1 At a more mundane level, people with disabilities are traditionally perceived as somehow inauspicious. Much qualitative research has found considerable social marginalization of people with disabilities in India, though most also acknowledge that the social status of the PWD’s family has an impact on their potential acceptance in society. Box 2.1 discusses images of PWD in Hindu mythology and Bollywood cinema by way of illustrating popular culture perceptions of people with disabilities.

Research from urban and rural Andhra Pradesh in the early 2000s asked people about whether disability was a punishment or curse of God.2 The researchers found around 40 percent of respondents agreeing that it was, with the share of people holding such views increasing with age, being higher among women, higher for lower socio-economic groups, and higher for those who were illiterate. Interestingly, there was not a major difference in such views between urban and rural respondents, though urban people were slightly less likely to hold such views. This is in contrast to earlier qualitative research in Karnataka, which had found higher belief in medical causes of disability in urban populations.

The present study asked a similar question for a much larger sample of households in rural UP and TN, and the results are presented in Figure 2.1. For both households with and without a disabled member, around half the respondents believed that disability was always or almost always a curse of God. The variations in this belief between the two states were not dramatic. An additional interesting result was that in UP respondents in households with a PWD had a 15 percent higher share with this belief than households without a PWD member.

The results in Figure 2.1 are aggregated across different disability types. The survey also asked the same question by major disability categories, and results are presented in Figure 2.2. which show significant differences in the perception of disability as a curse according to type of disability, with both visual and mental disabilities viewed as more likely to be due to a curse of God, and non-polio locomotor disability (in most cases from injuries/accidents) significantly lower than average (though still substantial).

Half rural respondents in rural UP and TN believe that disability is always a curse of God
Figure 2.1: Belief that disability a curse of God, rural UP and TN, 2005



Source: UP and TN survey, 2005. % of respondents replying that disability was always/almost always a curse of God.

The UP and TN study surveyed just over 1400 households with and without disabled members about their attitudes to participation of PWD in some key social and economic activities. The three major activities assessed as critical to “normal” social participation of PWD were education, employment and marriage/family life. The survey also asked about participation in local community and political life.

Figure 2.2: Belief that disability a curse of God by disability type, rural UP and TN, 2005



Source: UP and TN survey, 2005. % of respondents replying that disability was always/almost always a curse of God

With respect to education, people were asked under what circumstances children with specified disabilities could participate in regular school, and/or in special schools. Table 2.1 presents the findings on regular and special schooling. The table reports the share of respondents reporting that children with the indicated disabilities should always or almost always attend each type of school. Several interesting findings emerge:

• overall, there is low acceptance of children with disabilities attending regular schools. 4 At the same time, there are major differences by disability type in the acceptability of CWD attending regular schools. Acceptance that children with locomotor disabilities can always attend regular school is high (though acceptance that they could attend a special school is even higher). For those with vision and speech/hearing disabilities, only between a fifth and a quarter of respondents thought that they could always/almost always attend regular schools. However, for children with mental illness or retardation, there was very high agreement that they should never attend regular schools.
  
  Table 2.1: Acceptance that children with disabilities should always attend special (top) and regular (bottom) schools, by disability type, UP and TN, 2005
  

  Special School	Non-PWD	PWD	Severe PWD
  Locomotor	96.7	95.3	96.2
  Vision	91.1	87.2	88.3
  Speech/hearing	86.5	82.5	83.4
  Mental Ill	61.4	50.1	52.9
  MR	60.8	51.9	54.0

  
  

  Special School	Non-PWD	PWD	Severe PWD
  Locomotor	81.8	80.6	80.4
  Vision	25.7	27.8	25
  Speech/hearing	21.3	19.9	19.9
  Mental Ill	2	1.9	2
  MR	1.1	1.3	1.3

  
  Source: UP and TN survey, 2005. Bank staff estimates.
• for children with mental illness and mental retardation, almost half of respondents (including in PWD households) did not think that they could always attend either regular or special school. This confirms the much more serious attitudinal issues with respect to children with these disabilities.
• perhaps the most interesting overarching result is that households with disabled or severely disabled members exhibit very similar attitudes to those of households without disabled members. The small differences indicate slightly less willingness of households with disabled members to accept attendance of disabled children in regular schools.{mospagebreak}

Previous research has pointed to significant challenges for persons with disability in getting married and having families.5 Even where marriage can be arranged, disabled women in particular are frequently married to much older men, and rates of divorce and abandonment have been found to be high, as the NSS data on widowhood among disability would seem to support. Attitudes to marriage and family life were also asked in the current study and the findings are presented in Figures 2.3 and 2.4. A few observations emerge:

• overall, unconditional acceptance of a PWD marrying a non-PWD was found in only around half of households. This did not show much state variation. Qualitative work undertaken in parallel with the survey revealed that there was wider acceptance of PWD men marrying non-PWD women than the reverse, particularly if the men were well-off. 6 The insight is supported by survey findings from Gujarat of women with disabilities having more than double the rate of spouses with disabilities. 7 In addition, communities indicated that it would generally be easier for people with the same disabilities to marry.
• at the same time, more than a quarter of households in TN felt that a PWD should never marry a non-PWD. On this issue, the difference with UP were very pronounced.
• despite the majority acceptance of the possibility of PWD/non-PWD marriage, around half respondents felt that dowry would always need to be adjusted in such cases.

Figure 2.3: Acceptance of PWD marrying non-PWD


Figure 2.4: Opinion on need for dowry adjustment if PWD marries non-PWD

UP and TN village surveyan’t say.

An important associated question was the perceived capacity of women with different disabilities to have children and care for them. Much sociological literature from India notes the fundamental importance of these roles in defining womanhood. 8 Exclusion from marriage and child rearing results in “social obscurity and annulment of femininity”.9 The results from the UP and TN survey are presented in Table 2.2 below by disability type on the proportion of households agreeing with the statement that women with specific disabilities can always/almost always have and care for children. The main points to note are:

• overall, positive perceptions on the ability of disabled women to have and care for children are minority views.
• there is strong variation by disability type in position perceptions, with again mental illness and mental retardation attracting the strongest negative attitudes.
• there are sharp variations by state in the perceptions with respect to different disabilities.

Table 2.2: Positive perceptions of capacity of women with disabilities to have and care for children, UP and TN, 2005 (%)

Source: UP and TN village survey, 2005. % of respondents answering “always/almost always” to statement “Women with [specified] disabilities are capable of having and caring for children”.

A final important element of intra-household attitudes and community views relates to violence against women with disabilities. This is a subject on which little quantitative research has been done to date in India. However, a recent study from Orissa indicates that women with disabilities were subject to significant domestic abuse and sexual abuse, and that the situation was sharply worse for women with mental impairments relative to women with other types of disabilities. 11 Results are presented in Figure 2.5 below. The results for rape are the most shocking, with fully one quarter of women with mental disabilities reporting having been raped (with the large majority carried out by family members), and almost 13 percent of women with locomotor, visual and hearing disabilities. In only a small share of cases did the women report the abuse to her family, and in the vast majority of those cases the reaction of the family was either not to listen or to pretend nothing had happened.

Women with disabilities in Orissa report high rates of physical and sexual abuse, particularly for women with mental disabilities
Figure 2.5: Women with disabilities reporting physical and sexual abuse, Orissa, 2005


Source: Swabhiman (2005). Physical abuse = “being beaten at home”. Unwanted touching = “touching, pinching etc”.

In the UP and TN survey, households were also asked about participation of PWD in community activities like festival and religious celebrations, and on participation in local political and group activities such as gram sabhas and farmers’ associations. The results, presented in Figure 2.6, are far more positive than several of the attitudes presented above. Overall, there was high agreement with the proposition that PWD should always be allowed to participate in community activities, and almost as strong agreement that they should be included in local political and group activities. In both cases, the share of respondents indicating that PWD should never be allowed to participate was only around 1 percent.

Interestingly however, with respect to participation in community activities, qualitative work with the same communities found that the initially positive responses weakened during deeper discussion, with concerns for certain celebrations such as weddings that the presence of PWD may be inauspicious. This more nuanced situation is supported by research from Orissa finding low rates of participation by disabled women in religious and social life, with the situation much worse for women with mental impairments. 12 Research in Gujarat has also found that people with disabilities attended only around half of social and religious functions and were often discouraged from attending marriages. 13 With respect to local political participation, households with PWD had similar (high) voting rates to non-PWD households in gram sabha elections, though somewhat lower attendance rates as meetings.

Attitudes to participation in community and political life of PWD are much more positive
Figure 2.6: Positive attitudes to PWD participation in community and political activities, UP and TN, 2006



Source: UP and TN village survey, 2005. % of respondents answering always/almost always to participation of PWD.

The final attitudinal questions were about whether PWD can be successfully employed and the results are presented in Figure 2.7. A few points emerge:

• overall, the assessment of PWD capacity for successful employment is low. Even in the best case (locomotor disability) only half of respondents felt that PWD could be always/ almost always successfully employed. This share fell to less than 30 percent for vision impairments, and was less than 2 percent for both mental illness and mental retardation. In contrast, respondents felt that people with mental illness could never be successfully employed in 86 percent of cases, and for mental retardation the share was 78 percent.
• there is major variation in attitudes to the possibility of successful employment by disability type, with mental disabilities experiencing the most negative attitudes. For the other three categories, the shares are higher. In addition, around a further third of respondents felt that those with locomotor, vision and hearing/speech disabilities could be successfully employed sometimes. The variation by disability type is consistent with previous research in rural south India, though the relative impact of different disabilities varied, with for example a strong premium placed on visual acuity but notably less on hearing capacity (reflecting the demands of agricultural work).
• while the above findings are perhaps not surprising, the major variation between UP and TN on attitudes to non-mental disabilities was less expected. More research is needed on the drivers of such differences. Part of the explanation may lie in commonness of disabilities in different areas, as for example the incidence of locomotor disabilities from polio is higher in UP and may be associated with more accepting attitudes.

An additional interesting finding on employment is that responses by PWD themselves to the same question revealed surprisingly similar results in terms both of low share of respondents answering positively on PWD employment capacity and in terms of the variation in positive response shares across disability types. In all cases, the share of PWD answering positively was slightly lower than for household heads, indicating that there is a major self-esteem agenda among PWD to be addressed in order to improve their labor market outcomes.{mospagebreak}

Strong positive attitudes to PWD employment capacity are low, and there is major variation in attitudes to PWD employment, both by disability type and location
Figure 2.7: Positive attitudes to PWD employment by disability by, UP and TN, 2005


Source: UP and TN Village Survey. Proportion of HH head respondents answering always/almost always to statement: “People with a disability can be successfully employed”.

All the above results are from households. In qualitative work, similar questions were addressed to key service providers and officials, including ANM/anganwadis, teachers, doctors, and panchayat representatives. Overall, the opinions of service providers were somewhat more inclusive with respect to participation of PWD in their services. The same did not appear to be the case with panchayat representatives, who largely reflected the views of their communities.

With respect to education, there has been more research on the attitudes of teachers and education administrators to CWD and their inclusion in regular school settings. This is discussed in Chapter 5. More broadly, much research remains to be done on assessing, and developing strategies to improve, the attitudes of public officials and service providers to PWD. Despite the PWD Act, some evidence suggests that these key groups – at least in some states - may continue to have negative attitudes towards PWD, as data from Orissa on attitudes to PWD presented in Table 2.3 demonstrates. The attitudes of corporates and workers in community institutions were more accepting than those of government officials, education and health workers.

Table 2.3 Government officials and education and health workers had the highest rates of negative attitudes towards PWD in Orissa

Source: Swabhiman (2005).

While providing empirical insights is useful, how to work on changing long held and sometimes culturally-grounded attitudes is of course much more challenging. It appears that the challenges will be particularly acute in the areas of mental illness and mental retardation. However, there are positive examples of NGOs working towards attitudinal change on disability, in some cases with quantifiable impacts. Some efforts have been broad-based, others focus on service provides in specific areas, while others work at a very localized level through CBR and other channels. One of the more ambitious, well-documented and high impact efforts at attitudinal change is outlined in Box 2.3. which demonstrates the potential impact of effective public/private partnership in spreading awareness and reducing stigma for disabilities. There are also many examples of NGOs working with educators and other community figures to change attitudes and outcomes, as illustrated by the example of Vikas Jyot Trust in Vadodara in Box 2.2.

Changing societal attitudes to people with disabilities, even among people with disabilities themselves at times, presents many challenges. However, a basic starting point is facts. The leprosy campaign and its impact are clear demonstration that part of the stigma attaching to disability is driven by ignorance (see Box 2.4). It will thus be critical that various public health, educational, and other general awareness campaigns of government and non-governmental sectors drive home the causes of disability, and that disability is not a pre-ordained event.{mospagebreak}

Changing attitudes to disability is likely to area where it is particularly important for governments to work with people with disabilities, NGO/DPOs, and communities. However, governments at all levels can work to identify effective change agents in their communities, and allocate explicit funding to support their activities. They can also contribute to raising the profile of people with disabilities through awards and other forms of recognition such as the national Awards for Persons with Disabilities, which are given to outstanding employers and persons with disabilities each year in International Day of Disabled Persons. 15 Finally, the potential of cultural performance and the arts for both transformation of self-perceptions among PWD and of the general community of their capacities is significant, as the experience of Ability Unlimited, a dance troupe of people with disabilities, demonstrates.

A second important step where media, persons with disabilities, social activists, and NGOs are likely to have comparative advantage is putting the experience and success stories of persons with disabilities into the public arena. This is increasingly being done, but at times in ways that characterize disabled people as objects of pity or “superhuman” in dealing with their disabilities. However, this is not always the case, as the powerful work of activists such as Harsh Mander demonstrates. 16 Equally, the disability movement is becoming more effective in disseminating insights into the lives of persons with disabilities through vehicles such as the Success and Ability quarterly of the Ability Foundation in Chennai.

The most powerful impacts, however, are likely to be felt at the individual level. An important step in this regard is following the guidance offered by people with disabilities in India on interactions with disabled people. Their “simple tips” are as follows:

• listen to the person with the disability. Do not make assumptions about what the person can or cannot do.
• when speaking with a person with a disability, talk directly to that person, not through her companion.
• extend common courtesies to people with disabilities as you would to anyone else. Shake hands or hand over business cards. If the person can not shake your hand or grasp your card, they will tell you. Do not be ashamed of the attempt however.
• offer assistance to a person with a disability, but wait until your offer is accepted before you help.
• it is okay to feel nervous or uncomfortable around people with disabilities, and it is okay to admit that. When you encounter these situations, think “person” first instead of disability and you will eventually relax.
• when meeting a person who is visually impaired, always identify yourself and others who may be with you.
• speak naturally to a hearing impaired person and do not exaggerate or over-emphasize your speech, as this will be easier for the person to “see” the word.
• when speaking with a person who uses a wheelchair or crutches, place yourself at eye level in front of the person.
• treat adults as adults. Address people with disabilities by their first names only when extending the same familiarity to others.
• never pretend to understand the speech of a person with a disability if you are having difficulty doing so.{mospagebreak}